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AN 10 26
A cadre of elite techies, financiers, and high-level Trump administration officials have spent a year quietly charting an extraordinary and rapid campaign to persuade Americans to use apps and other artificial intelligence-powered tools to manage their healthcare and medical records.
As that campaign has unfolded, administration officials have granted tech companies an unusual opportunity to nudge the nation’s health department toward a loosely regulated future for AI health apps in which the government reimburses them for services as it does medical professionals.
In February, federal health officials invited those businesses — including tech giants Microsoft, Anthropic, OpenAI, Apple, and Google — to a listening session on conversational AI products for patients, such as chatbots. Representatives from at least 35 industry organizations attended the meeting held by the Food and Drug Administration, which is responsible for regulating health apps as medical devices. Companies were prompted in advance to explain their AI products and how they access patients’ sensitive medical information.
But the meeting did not appear on the FDA’s public calendar or regulatory notices, nor was the public invited. Rather, the invitation for a select group to help shape federal policy governing AI in healthcare was extended in a chat room on the messaging service Slack.
“This is a great opportunity to support HHS’ goals and share your state-of-the-art understanding of safe Conversational AI development and monitoring to help FDA shape future guidance,” CMS senior policy adviser Morgan Taylor wrote in the Slack workspace.
The Centers for Medicare & Medicaid Services has not formally announced the chat room through federal regulatory channels, though CMS officials have talked about it at industry conferences. Legal experts said the chat room resembles a federal advisory panel, which would be required to operate in public view.
KFF Health News reviewed thousands of Slack messages, meeting transcripts, and video recordings that reveal how the Trump administration has granted the industry a direct line to top government officials — including former head of the Department of Government Efficiency Amy Gleason.
The conversation took place behind the scenes as federal health officials publicly worked to integrate AI and other technology into nearly every aspect of healthcare, a plan they’ve branded the “Health Technology Ecosystem.”
“We wanted to give industry a chance to play in the sandbox of government-supported healthcare,” CMS Administrator Mehmet Oz said in September at the public launch of an initiative that allows health apps to bill Medicare for AI services such as wearable device tracking. Last week, Health and Human Services Secretary Robert F. Kennedy Jr. delivered an enthusiastic endorsement of AI in healthcare, claiming it is “much better informed than any doctor in the country.”
Meanwhile, HHS staff even promised that a recently launched Medicare App Library would serve as a lucrative pipeline for those businesses to get new users. The library's webpage currently promotes only two dozen commercial apps to millions of American seniors and those with disabilities.
As Trump officials sell it, Americans will get easier access to their medical records so apps can swiftly provide health or wellness advice. In practice, however, so will the tech companies.
Doctors, meanwhile, are increasingly worried about how patients use and share their medical records with the nascent technology.
“Some of these tools just aren’t ready for primetime,” said John Whyte, CEO of the American Medical Association. “We don’t have enough data about them. We don’t understand how they work, how they’re using the information. There’s no liability if these tools get things wrong.”
CMS officials declined to answer several questions about the Slack workspace, including about its legality.
“CMS is focused on giving Medicare beneficiaries greater access to their health information and useful digital tools while promoting an open, interoperable healthcare system,” Gleason, now chief product officer for the newly created Office of Health Technology and Products at CMS, wrote in an emailed statement. “The Health Technology Ecosystem is an open, voluntary technical collaboration. CMS will continue working with patients, providers, payers, technology organizations, and other stakeholders to make health information more accessible and useful to the Americans it serves.”
The FDA did not respond to a request for comment.
The Conversation Begins
The behind-the-scenes effort to funnel more Americans to AI-powered health apps began in August 2025 in the Slack workspace.
“Welcome all!” Gleason wrote. “Please be sure to read the Code of Conduct and see the Channel list as well to help you find channels that are relevant to you.”
Gleason is best known for serving as the acting administrator of Elon Musk’s Department of Government Efficiency, as it gained access to millions of Americans’ sensitive personal and financial data, including at the Social Security Administration.
As her work with DOGE wound down last year, Gleason welcomed a variety of tech leaders, investors, and entrepreneurs to the chat room.
The Slack workspace’s participants include representatives from major digital wellness companies like Oura Health, AI companies like Palantir, and investment outfits like 8VC, a venture capital firm associated with Kennedy’s son Finn. While the Slack’s member count has ballooned to 1,700 over the past year, only a handful of patient advocates, doctors, and hospital representatives are in it.
The code of conduct Gleason shared on Slack in August 2025 documented that CMS had quietly established a technology working group.
The document also set ground rules for the Slack workspace, noting that the group does not constitute an “advisory committee,” nor would it be used “to obtain advice or recommendations for HHS, CMS, or any HHS/CMS officials.” The code also advises that federal employees “are prohibited from endorsing any product, service, or enterprise.”
Joseph Daval, a former FDA lawyer who is now a research specialist at Harvard Medical School, reviewed messages from the Slack workspace at the request of KFF Health News. He said the chat room in some ways resembles a federal advisory committee — an independent panel that can be formally stood up by an agency head, Congress, or the president to ensure agencies act in the best interest of the public rather than industry.
The law on advisory committees “was passed in part out of a concern about interest group capture, about anticompetitive capture of agency policymaking, about corruption,” he said.
Daval said the chat group looks like a committee, with members interacting with one another and building consensus on preferred courses of action.
If it were a formal advisory committee, though, Daval said, it would be subject to certain “membership requirements having to do with independence and fair balance.”
A ‘Sales Engine’
Over a series of video calls, CMS officials promised tech leaders participating in the Slack workspace that the agency would promote their health apps.
Jacob Shiff, the chief AI and technology officer at CMS’ Innovation Center, told industry representatives in a Zoom meeting in February that he hoped the agency’s work would be a “sales engine” for the health apps.
“We’re going to have a directory of all the organizations,” Shiff said in a video recording reviewed by KFF Health News. “The people on this call who hopefully will have amazing solutions that work will be the winners, and you have every incentive to obviously drive down your costs so you can be extremely profitable and scale. So hopefully we’re selling — or enabling you guys to thrive.”
A recording of the call had been publicly available through a Google Drive link but was made private the day after KFF Health News asked about comments made during the meeting.
CMS did not respond to queries about how the agency has decided which AI-powered health apps appear in the Medicare App Library or why federal employees have promised to promote the products.
Days before publicly launching the Medicare App Library, CMS officials promised AI tech leaders during an informal meeting that the new webpage would become an important distribution channel for health apps because Medicare enrollees would place trust in products listed on the CMS website.
“If medicare.gov is promoting it, for lack of a better word, then yeah, it would be an app that I would trust and explore,” CMS’ Taylor said during the April 7 meeting, channeling enrollees, according to a transcript of the call.
The Medicare App Library’s webpage encourages older and disabled Americans to manage health conditions such as obesity, cancer, or diabetes using two dozen AI-driven apps developed by some of the world’s largest corporations, including Microsoft and Google. Many of the apps promise in their product descriptions to give insight, perform analyses, or develop plans that will help patients lose weight or manage diabetes.
CMS officials have suggested to tech representatives during at least two meetings this year that those apps will be prioritized for a new agency program that reimburses companies for AI chatbot advice or wearable device tracking, according to video recordings.
CMS has not publicly divulged all the criteria it uses to decide which apps are listed in its library, but the webpage promotes apps still in their infancy.
Among them is Slothwise, a health app launched this year from a San Francisco apartment by a young, self-described biotech entrepreneur and triple citizen of Russia, Israel, and the U.S. The app says it “knows your whole health” by analyzing medical records and tracking health data for $9.99 a month. It has been reviewed on the Apple and Google app stores only a handful of times.
“I trusted slothwise with my health info because it was endorsed by medicare,” one reviewer wrote in a Google review in August. “Connecting info was smooth and I learned a lot about my health.”
In a statement, Slothwise CEO Sofia Sigal-Passeck did not answer questions about the size and medical expertise of her current team, nor about the availability of a doctor to consult with patients who use the app. The app, she said, is only “informational” at this time.
“I’ve spent years building at the intersection of AI and complex biological data,” Sigal-Passeck wrote in an email. “A small team is not the same thing as an inexperienced team. Slothwise is built by physicians, PhD researchers and engineers.”
‘No Regulation, No Rulemaking’
What’s often less clear — and buried deep in lengthy privacy policies — is that these apps are tapping into the intimate details of patients’ medical records to fuel their AI-driven analyses.
Tech vendors have lobbied the government to treat these apps, once they are vetted and authorized by a third-party organization, like a patient requesting records. That position gives apps sweeping access to pull sensitive health data from the national network through which providers electronically exchange medical records, called the Trusted Exchange Framework and Common Agreement, or TEFCA.
A small but influential group of those tech company executives directly made the case to federal health officials during a formal meeting in May, arguing that when health apps request medical records they should be treated as if they are standing “in the shoes” of a patient.
On Slack, tech vendors have lobbied for a “frictionless pathway” for verified users, after they’ve consented once, that allows the app to gain limitless access to patients’ medical records from the TEFCA network.
Ryan Howells, a healthcare management consultant who lobbies for a Washington, D.C.-based digital health tech organization called the CARIN Alliance, has spearheaded an effort for patients — vis-à-vis apps — to more easily access medical records. He has regularly noted in Slack that health apps accessing TEFCA must be vetted by a third-party organization — one of which he sits on the board of — and agree to a code of conduct, developed by the alliance he lobbies for.
“What more can you do to have trust in these apps?” he wrote in a March Slack message, responding to concerns about how much patient consent is needed for apps to access medical records on the network.
Kristen Valdes, the CEO of b.well, a company that also connects apps to the TEFCA network, made a similar argument.
“My opinion is that we need to stop protecting patients from themselves,” she wrote in the same message thread. “Full stop.”
Howells did not respond to an emailed list of questions from KFF Health News. In an interview, Valdes told KFF Health News that her comment reflected her frustration at the “paternalism” of the healthcare system, which she said has historically made it difficult for patients to access their records. Although, she said, “there are going to be good and bad apps.”
Other tech leaders worried in Slack about the approach.
One startup founder cautioned the group to think about the pitfalls of giving health apps broad leeway to pull medical records.
“We might all be good, honest actors here but security & privacy systems have to be designed around the presence of malicious actors – especially if we want this system to scale up to thousands of apps,” wrote Jason Kulatunga, who runs Fasten Health, a medical records management platform.
Gleason, the CMS official, has publicly championed the vision shared by Howells and Valdes. In her speeches, she frequently urges doctors to accept patient medical records directly from apps and calls on them to “Kill the Clipboard,” also the title of a 2025 white paper co-authored by Howells that urges doctors' offices to abandon paper records.
Last month, Gleason spoke to a crowd gathered at a swanky hotel in Washington for an event hosted by the MAHA Institute, a think tank that supports Secretary Kennedy’s agenda. She laid out her work with tech companies over the past year as she discussed the Trump administration’s efforts to make medical records more digitally accessible.
As she told it, more Americans can now download an app and access their medical records.
“Once you’ve verified your identity you can just click a simple button and say, I’d like my medical records into whatever app I choose,” Gleason said.
She continued: “That was all done just — no regulation, no rulemaking — just by challenging industry to work together.”
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AN 12 25
Sarah Monroe once had a relatively comfortable middle-class life.
She and her family lived in a neatly landscaped neighborhood near Cleveland. They had a six-figure income and health insurance. Then, four years ago, when Monroe was pregnant with twin girls, something started to feel off.
“I kept having to come into the emergency room for fainting and other symptoms,” recalled Monroe, 43, who works for an insurance company.
The babies were fine. But after months of tests and hospital trips, Monroe was diagnosed with a potentially dangerous heart condition.
It would be costly. Within a year, as she juggled a serious illness and a pair of newborns, Monroe was buried under more than $13,000 in medical debt.
Part of the reason: Like tens of millions of Americans, she had a high-deductible health plan. People with these plans typically pay thousands of dollars out of their own pockets before coverage kicks in.
The plans, which have become common over the past two decades, are getting renewed attention thanks to President Donald Trump and his GOP allies in Congress.
Many Republicans are reluctant to extend government subsidies that help cover patients’ medical bills and insurance premiums through the Affordable Care Act.
And although GOP leaders have yet to coalesce around an alternative, several leading Republican lawmakers have said Americans who don’t get insurance through an employer should get cash in a special health care account, paired with a high-deductible health plan. In such an arrangement, someone could choose a plan on an ACA marketplace that costs less per month but comes with an annual deductible that can top $7,000.
“A patient makes the decision,” Sen. Bill Cassidy (R-La.) said at a recent hearing. “It empowers the patient to lower the cost.”
In a post on Truth Social last month, Trump said, “The only healthcare I will support or approve is sending the money directly back to the people.”
Conservative economists and GOP lawmakers have been making similar arguments since high-deductible health plans started to catch on two decades ago.
Back then, a backlash against the limitations of HMOs, or health maintenance organizations, propelled many employers to move workers into these plans, which were supposed to empower patients and control costs. A change in tax law allowed patients in these plans to put away money in tax-free health savings accounts to cover medical bills.
“The notion was that if a consumer has ‘skin in the game,’ they will be more likely to seek higher-quality, lower-cost care,” said Shawn Gremminger, who leads the National Alliance of Healthcare Purchaser Coalitions, a nonprofit that works with employers that offer their workers health benefits.
“The unfortunate reality is that largely has not been the case,” Gremminger said.
Today, deductibles are almost ubiquitous, with the average for a single worker with job-based coverage approaching $1,700, up from around $300 in 2006.
But even as high deductibles became widespread, medical prices in the U.S. skyrocketed. The average price of a knee replacement, for example, increased 74% from 2003 to 2016, more than double the rate of overall inflation.
At the same time, patients have been left with thousands of dollars of medical bills they can’t pay, despite having health insurance.
About 100 million people in the U.S. have some form of health care debt, a 2022 survey showed.
Most, like Monroe, are insured.
Although Monroe had a health savings account paired with her high-deductible plan, she was never able to save more than a few thousand dollars, she said. That wasn’t nearly enough to cover the big bills when her twins were born and when she got really ill.
“It’s impossible, I will tell you, impossible to pay medical bills,” she said.
There was another problem with her high-deductible plan. Although these plans are supposed to encourage patients to shop around for medical care to find the lowest prices, Monroe found this impractical when she had a complex pregnancy and heart troubles.
Instead, Monroe chose the largest health system in her area.
“I went with that one as far as medical risk,” she said. “If anything were to happen, I could then be transferred within that system.”
Federal rules that require hospitals to post more of their prices can make comparing institutions easier than it used to be.
But unlike a car or a computer, most medical services remain difficult to shop for, in part because they stem from an emergency or are complex and can stretch over numerous years.
Researchers at the nonprofit Health Care Cost Institute, for example, estimated that just 7% of total health care spending for Americans with job-based coverage was for services that realistically could be shopped for.
Fumiko Chino, an oncologist at the MD Anderson Cancer Center in Houston, said it makes no sense to expect patients with cancer or another chronic disease to go out and compare prices for complicated medical care such as surgeries, radiation, or chemotherapy after they’ve been diagnosed with a potentially deadly illness.
“You’re not going be able to actually do that effectively,” Chino said, “and certainly not within the time frame that you would need to when facing a cancer diagnosis and the imminent need to start treatment.”
Chino said patients with high deductibles are often instead slammed with a flood of huge medical bills that lead to debt and a cascade of other problems.
She and other researchers found in a study presented last year that cancer patients who had high-deductible health insurance were more likely to die than similar patients without that kind of coverage.
For her part, Monroe and her family were forced to move out of their house and into a 1,100-square-foot apartment.
She drained her savings. Her credit score sank. And her car was repossessed.
There have been other sacrifices, too. “When families get to have nice Christmases or get to go on spring break,” Monroe said, hers often does not.
She is thankful that her children are healthy. And she continues to have a job. But Monroe said she can’t imagine why anyone would want to double down on the high-deductible model for health care.
“We owe it to ourselves to do it a different way,” she said. “We can’t treat people like this.”
*KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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10 25 an
SARASOTA, Fla. — Florida plans to end nearly a half-century of required childhood immunizations against diseases that have killed and maimed millions of children. Many critics of the decision, including doctors, are afraid to speak up against it.
With the support of Republican Gov. Ron DeSantis, Surgeon General Joseph Ladapo on Sept. 3 announced his plan to end all school-age vaccination mandates in the state.
“Every last one of them is wrong and drips with disdain and slavery,” he told a cheering crowd of vaccination foes in Tallahassee. “Who am I, as a government or anyone else,” he said, “to tell you what you should put in your body?”
History shows that mandates increase the use of vaccines. Lower vaccination rates will mean increased rates of diseases like measles, hepatitis, meningitis, and pneumonia — and even the return of diphtheria and polio. Many of these diseases threaten not just the unvaccinated but also those they come in contact with, including babies and older people with weakened immunity.
But that scientific fact is being left unsaid in Florida. Health officials have largely been silent in the face of Ladapo’s campaign — and not because they agree with him. The University of Florida muzzled infectious disease experts, said emeritus professor Doug Barrett, formerly the university’s chief of pediatrics and senior vice president for health affairs.
“They’re told not to speak to anyone without permission from supervisors,” he said. University spokespeople didn’t respond to requests for comment.
County-level Department of Health officials across the state got the same message, said John Sinnott, a retired professor at the University of South Florida who is friends with one of the county health leaders.
Sarasota County’s health department referred a reporter to state officials in Tallahassee, who responded with a statement that vaccines will “remain available” to families who want them. The state did not respond to other requests for comment or for an interview with Ladapo.
Many pediatricians are silent, too, at least in public.
“A lot of them don’t take a strong stance on whether kids need to be vaccinated,” said Neil Manimala, a urologist and the president-elect of the Hillsborough County Medical Association. “They don’t want to lose business. And there are enough anti-vax people who can lambaste you on Google, spreading stories about clinicians who ‘want to instill the poison jabs.’”
History of Modern Vaccine Mandates
Several states ended vaccination mandates early last century when smallpox was the only widely given vaccine, said historian Robert Johnston of the University of Illinois-Chicago. None has done so since other vaccines were added to the schedule. (Routine smallpox vaccination ended in 1972).
In the 1970s, persistent measles outbreaks provoked officials to strengthen child protection with enforced school mandates in every state. Today the partisan split on vaccine policy in the wake of the covid outbreak has changed the equation. This is nowhere more the case than in Florida, although legislators in Texas and Louisiana are also considering ending mandatory vaccination, and Idaho enables parents to get an exemption just by asking for it.
“This is really going to be a watershed moment for families who already were not sure they want to do vaccines and now are being told they don’t need them,” said Jennifer Takagishi, vice president of the Florida branch of the American Academy of Pediatrics.
It’s hard to know how fast vaccine-preventable diseases might return if Florida ends its mandates — or how the public will respond. Asked
whether his office had modeled disease outcomes before his September announcement, Ladapo said “Absolutely not.” Parental freedom of choice isn’t a scientific matter, he said. “It’s an issue of right and wrong.”
Ladapo’s Department of Health did not respond a month later when asked whether it was making contingency plans for outbreaks. During a 2024 measles outbreak in Broward County, Ladapo sent parents a letter granting them permission to send unvaccinated children to school, defying the science-supported advice from the federal Centers for Disease Control and Prevention.
In 1977, a measles epidemic that killed two children in Los Angeles County spurred a dramatic crackdown on vaccine-shunning across the country. But during an epidemic this year that killed two Texas children and 14 people in Mexico, Republican Gov. Greg Abbott of Texas signed a bill making it easier for parents to opt out of getting required shots.
“When are we going to have enough of a groundswell of people dying or becoming severely ill that leads people to push back and say, ‘No, no, we want the vaccines?’” Takagishi said. “I don’t know if we know the tipping point yet.”
“I don’t have the answer,” said Emory University emeritus professor Walter Orenstein, who worked on measles for many of his 26 years at the CDC and led the agency’s immunization program from 1988 to 2004. “Measles resurgences created the political will to support our overall immunization program. For some reason it hasn’t worked this time. It’s just sad.”
Youngsters in Florida are already among the least vaccinated in the nation, because of relatively lax enforcement, the post-covid backlash against shots, and the libertarian attitude of state officials. Statewide, only about 89% of kindergartners are fully vaccinated, with Sarasota County having the lowest rate, at about 80%. To be safe from the spread of measles, a community must be 95% immunized.
With Health and Human Services Secretary Robert F. Kennedy Jr. cutting vaccine research, filling the health agency with anti-vaccine activists and spreading doubt about vaccination’s safety and value, little stands in the way of decisions by Florida officials that are likely to cause rates to sink further.
Ladapo’s department is ending mandates for shots against hepatitis B, chickenpox, and the bacteria causing meningitis and pneumonia. Early next year, the Florida Legislature is expected to take up reversal of a 1977 law requiring kids at school and day care to be vaccinated against seven other diseases that can kill children: whooping cough, measles, polio, rubella, mumps, diphtheria, and tetanus.
After Measles, Which Disease Returns Next?
In the face of these attacks, scientists are attempting to predict which diseases are likely to make a resurgence and when.
A study published in April by Stanford epidemiologist Mathew Kiang and colleagues estimated that even at current vaccination levels, measles, declared eliminated from the United States in 2000, is likely to become a routine illness again. If measles vaccination rates drop by an additional 10%, there could be an average of about 450,000 cases yearly, with hundreds of deaths and cases of brain damage.
But the study may exaggerate the threat, said Shaun Truelove, an epidemic disease modeler at Johns Hopkins University who said he’s worried about losing public trust with alarmist predictions. Still, he said, an intensification of measles outbreaks seems certain. The country is already in the midst of its worst measles year in three decades, with more than 1,500 cases and current outbreaks in South Carolina and Minnesota.
“You don’t really need to model measles if vaccines stop,” Truelove said. “In the pockets where there are outbreaks, every kid who isn’t vaccinated will get infected.”
Measles is the “canary in the coal mine” for other vaccine-preventable diseases, said Sal Anzalone, a pediatrician with Healthcare Network in Naples, Florida. “When you start seeing measles, there’s more to come behind that.”
People who want vaccinations will still be able to get them if mandates are eliminated, Ladapo has said.
But the state’s message confuses parents, especially the poor and underserved, Anzalone said. It’s typically hard for them to get children to appointments unless they have to, he said, noting that 80% of his patients are insured through Medicaid. If policies put more of the payment burden on parents, fewer will vaccinate, he said.
And if vaccinations fall and infections increase, children won’t be the only people affected. Cancer patients and people in Florida’s numerous elderly communities would be at risk. Schools and businesses would be disrupted. Disease could disrupt the tourism industry, which brought 143 million people to the state last year. (The Florida Chamber of Commerce did not respond to requests for comment.)
“Infectious diseases don’t stop with the people who say they are willing to bear the risk,” said Meagan Fitzpatrick, a University of Maryland vaccinologist. Because of their unpredictable spread, she said, “with an infectious disease, vaccination is never an individual choice.”
Clinicians fear that an end to mandates could allow hepatitis B, a chronic liver disease, to return with force, since an estimated 2 million Americans carry the virus. They also foresee a return to the days when infants with high fever had to undergo a painful and risky lumbar puncture and blood draw to rule out meningitis, as well as a blood infection caused by the bacteria Haemophilus influenzae type B that routine vaccination has prevented since the 1990s.
Barbara Loe Fisher, who co-founded the modern movement against vaccine mandates in the early 1980s after her son suffered a reaction to the pertussis vaccine then in use (and since replaced with a safer shot), is skeptical that Floridians will abandon vaccination en masse, despite the end to mandates.
Fisher, president of the National Vaccine Information Center, moved from Virginia to southwestern Florida in 2020. She said she believes that vaccine injuries are undercounted and that children are vaccinated without informed consent. She acknowledged that mandates have increased coverage but said their removal will increase trust in public health and medicine.
“It is time to allow biological products like vaccines to be subject to the law of supply and demand,” she said, “just like any other product sold in the marketplace.”
Sinnott, for his part, anticipates measles will come roaring back, along with intensified whooping cough, influenza, and covid outbreaks.
“They think nothing will happen. Maybe they’re right,” said Sinnott, the retired professor. “It’s an experiment.”
Polio could return, and that is not an abstraction for Sinnott, 77.
He was 7 years old when he contracted the disease, spending six months in a wheelchair. In recent years he’s suffered from post-polio syndrome — difficulty swallowing, and tightness and pain in his limbs.
The first polio vaccine was licensed in 1955, the year he got sick. “I remember one time my mother telling me, ‘The line was too long,’” he said.
Sinnott forgives his parents, and parents today who waver on vaccination. He’s less tolerant of certain public health leaders. They should know better, he said.
*KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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KFF FACT CHECK AN 10 25 SHUTDOWN BS
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Our Ruling
Vance said, “Democrats are threatening to shut down the entire government because they want to give hundreds of billions of dollars of health care benefits to illegal aliens.”
Immigrants in the U.S. illegally are largely ineligible for the federally funded health care programs Medicare and Medicaid, and they cannot seek coverage in the Affordable Care Act marketplace or apply for subsidies.
The Democrats’ budget proposal would not change that.
The Democrats want to restore access to certain health care programs to legal immigrants who will lose access under the Republican tax and spending law — among other measures aimed at making Medicaid and Affordable Care Act insurance plans easier to keep.
Their proposal would not grant federally supported health care benefits to people in the U.S. illegally, because they did not have access to them in the first place. The small amount of funding designated for Emergency Medicaid reimburses hospitals that provide emergency care to immigrants who would be eligible for Medicaid if not for their immigration status. Finally, we did not find evidence for Vance’s assertion that Democrats want “hundreds of billions” in health benefits for migrants in the country illegally.
We rate the statement False.
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AN 9 25 KFF
Rebecca Kasen has seen and heard things in recent years in and around Michigan’s capital city that she never would have expected.
“It’s a very weird time in our lives,” said Kasen, executive director of the Women’s Center of Greater Lansing.
Last November, a group of people were captured on surveillance video early one morning mocking a “Black Lives Matter” sign in the front window of the center, with one of them vandalizing its free pantry. That same fall, Women’s Center staff reported being harassed.
A couple of blocks down East Michigan Avenue, Strange Matter Coffee, which supports progressive causes in the community, has been confronted by “First Amendment auditors” outside its storefront. Some toted guns or cameras, sometimes chanting slogans supporting President Donald Trump, generally unnerving customers and staff, Kasen said.
In many cases, extremist activities and conduct throughout the U.S. over the past few years have been driven by the deepening chasm of political partisanship and disinformation-driven rebellion against responses to the covid-19 pandemic. More recently, backlash against immigration and diversity, equity, and inclusion initiatives has heightened tensions.
Last year, the Southern Poverty Law Center documented 1,371 hate and extremist groups nationwide sowing unrest through a wide range of tactics, sometimes violent. Over the last several years, the group writes, the political right has increasingly shifted toward “an authoritarian, patriarchal Christian supremacy dedicated to eroding the value of inclusive democracy and public institutions.”
Researchers at American University’s Polarization & Extremism Research & Innovation Lab, or PERIL, say that in online spaces, “hate is intersectional.” (For example, Pasha Dashtgard, PERIL’s director of research, explains, platforms dedicated to male supremacy are often also decidedly antisemitic.) Seemingly innocuous discussions erupt into vitriol: The release of “A Minecraft Movie” prompted tirades against an alleged trend toward casting Black women and nonbinary people.
The continued escalations drove staffers at PERIL and the Southern Poverty Law Center to approach the problem from a different angle: Treat extremism as a public health problem. Community Advisory, Resource, and Education Centers are now operating in Lansing, Michigan, and Athens, Georgia, offering training, support, referrals, and resources to communities affected by hate, discrimination, and supremacist ideologies and to people susceptible to radicalization, with a focus on young people.
The team defines extremism as the belief that one’s group is in direct and bitter conflict with another of a different identity — ideology, race, gender identity or expression — fomenting an us-versus-them mentality mired in the conviction that resolution can come only through separation, domination, or extermination.
Researchers who study extremism say that, as the federal government terminates grants for violence prevention, state governments and local communities are recognizing they’re on their own. (CARE receives no federal funding.)
Aaron Flanagan, the Southern Poverty Law Center’s deputy director of prevention and partnerships, said his organization and PERIL came together about five years ago to examine a shared research question: What would it take to create a nationally scalable model to prevent youth radicalization, one that’s rooted in communities and provides solutions residents trust?
They looked to a decades-old German counter-extremism model called mobile advisory centers. The objective is to equip “all levels of civil society with the skills and knowledge to recognize extremism” and to engage in conversations about addressing it, Dashtgard said.
“We’re not about, ‘How do you respond to a group of Patriot Front people marching through your town?’” Pete Kurtz-Glovas, who until June served as PERIL’s deputy director of regional partnerships, explained during a training in January. “Rather, ‘How do you respond when your son or a member of your congregation expresses some of these extremist ideas?’”
Michigan has long been considered fertile ground for extremism. Timothy McVeigh and Terry Nichols, convicted of the bombing of a federal building in Oklahoma City in 1995, were associated with a militia group in the state. Some of the men charged in 2020 in the plot to kidnap Democratic Gov. Gretchen Whitmer had ties to a militia group calling itself the Wolverine Watchmen.
The state’s capital city and adjacent East Lansing, where Michigan State University is, are relatively progressive but have seen conflict.
Will Verchereau has a vivid recollection from the early days of the pandemic: a pickup truck speeding down the street in their Lansing neighborhood, a Confederate flag flying from it, music blasting, later joining a rolling protest that clogged streets around the Capitol to protest Whitmer’s covid lockdown directives.
Incrementally, the community has responded to these expressions of extremism. After the confrontations at Strange Matter Coffee, Verchereau, a board member of the Salus Center, which advocates for and supports the LGBTQ+ community, said people banded together to talk about “how to be safe in those moments; how to de-escalate when and where possible.”
The CARE initiative reinforces such efforts. The centers offer tool kits catered to specific audiences. Among them are a parent and caregiver guide to online radicalization, a community guide to youth radicalization, and “Not Just a Joke: Understanding & Preventing Gender- & Sexuality-Based Bigotry.”
Flanagan said the team views this public health model as separate from but complementary to law enforcement interventions. The goal is to have law enforcement as minimally engaged as possible — to detect nascent warning signs and address them before police get involved.
The resources help identify conditions that can make people more susceptible to manipulation by extremists, such as unaddressed behavioral health issues and vulnerabilities, including having experienced trauma or the loss of a loved one.
Lansing resident Erin Buitendorp witnessed protesters, some of them armed, flood the state Capitol building during the pandemic over lockdown and masking orders. She’s a proponent of the public health approach. It’s “providing people with agency and a strategy to move forward,” she said. It’s a way to channel energy “and feel like you can actually create change with community.”
Lansing and Athens were chosen for a number of reasons, including their proximity to universities that could serve as partners — and to rural communities.
In the small town of Howell, 40 miles southeast of Lansing, protesters waived Nazi flags outside a production of the play “The Diary of Anne Frank” at an American Legion post.
In nearby DeWitt, the local school district proposed a mini lesson on pronouns for a first grade class that involved reading the picture book “They She He Me: Free to Be!” Threats against school staff followed and officials canceled the lesson. Since then, the CARE team has helped provide support to teachers there in holding conversations on contentious topics in classrooms and in dealing with skeptical parents.
“It’s really important that rural communities not be left behind,” Flanagan said. “They persistently are in America, and then they’re often simultaneously demonized for some of the most extreme, or extremist, political problems and challenges.”
The CARE team hopes to expand its program nationwide. Similar public health initiatives have been launched elsewhere, including Boston Children’s Hospital’s Trauma and Community Resilience Center and the DEEP program, run by New York City’s Citizens Crime Commission.
And in June a new tool, the Reach Out Resource Hub, went live, offering guidance to help prevent violent extremism.
Pete Simi, a professor of sociology at Chapman University and a leading expert on extremism, sees a daunting task ahead, with extremism’s having become more mainstream over the past 25 years. “It’s just devastating,” he said. “It’s really startling.”
Simi said that while there was previously talk of shifts in the Overton window, the range of ideas considered politically acceptable to mainstream society, “I would say now it has been completely shattered.” Violent extremists now feel “unshackled, supported by a new administration that has their back.”
“We are in a more dangerous time now than any other in my lifetime,” Simi said.
The Rev. Pippin Whitaker ministers the Unitarian Universalist Fellowship of Athens in Georgia, which last year received a package of ammunition in the mail with no note included. She embraces framing extremism, and people’s lack of awareness of it, as a public health issue.
“If you have a germ out there,” Whitaker said, “and people aren’t aware that if you wash your hands you can protect yourself, and that it’s an actual problem, you won’t enact basic protective behavior.”
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within an hour of receiving a covid vaccination in November 2020, Utah preschool teacher Brianne Dressen felt pins and needles through her arms and legs. In the medical odyssey that followed, she suffered double vision, chronic nausea, brain fog, and profound weakness. Once a rock climber, she became a couch potato.
Although Dressen’s symptoms were rare in that season of hundreds of millions of covid vaccinations, they were common enough to draw the attention of a National Institutes of Health neuroscientist named Avindra Nath, who examined Dressen and more than 30 other people with a similar syndrome in 2021. He recommended Dressen take steroids and antibodies — treatments that saved her life, she said.
And then, according to emails reviewed by KFF Health News, Nath said he couldn’t help anymore. His clinical study was ending. He directed the patients to seek local help. But, Dressen said, there wasn’t any.
Nath declined to speak to KFF Health News for this article. The FDA searched international vaccine safety databases for small-fiber neuropathy, one of the most common symptoms he mentioned in a write-up of the patients, and found it was less prevalent in vaccinated than in unvaccinated patients, said Peter Marks, who led the FDA division responsible for vaccines until Health and Human Services Secretary Robert F. Kennedy Jr. forced him out in May.
While it’s possible that Nath’s patients suffered covid vaccine injuries, Marks said, their symptoms were so varied it was hard to characterize a possible syndrome.
But for Dressen and others convinced the vaccines injured them, their experiences were symptomatic of a well-intentioned but flawed U.S. system for monitoring the rare ill effects of vaccines. The system isn’t well-funded enough to answer questions that people urgently want answered, and that can feed vaccine hesitancy, safety experts say.
Its shortcomings were on particular display during the mass vaccination campaigns of the pandemic, when even rare, serious side effects could affect thousands of people.
Now some leading vaccine scientists are calling for more resources to research vaccine safety and support people with claims of injury — and asking Kennedy, who has a history as an anti-vaccine activist, to step up.
“Spending money on vaccine safety is not saying vaccines aren’t safe; it’s showing a commitment to continued improvement,” said Y. Tony Yang, a professor of health policy at George Washington University’s Milken Institute School of Public Health.
So far, they’ve been disappointed. While Kennedy gives the public the impression that vaccines are harmful, he hasn’t talked about ways to make them safer. And he’s made the problem worse by cutting programs and dismissing scientists who are most knowledgeable of the problems, according to numerous vaccine experts.
“The reduction in emphasis on the unbiased ascertainment of vaccine safety signals, and redirection toward certain specific issues like autism in vaccines, which we know is not true — that is what’s dangerous,” Marks said.
In March, the Trump administration abruptly canceled a contract with researchers just as they began a massive covid vaccine study aimed at discovering the genetic traits that make certain people vulnerable to vaccine-triggered myocarditis. That condition struck about 1 in 13,000 teenage boys and young men who received two doses of the Pfizer or Moderna mRNA vaccine in 2020 and 2021.
Then, on June 9, Kennedy sacked the entire 17-member Advisory Committee on Immunization Practices, or ACIP, which during the pandemic impaneled a group of experts that reviewed safety data from nearly 700 million covid vaccinations.
The new ACIP contains members who have said most vaccines are dangerous and improperly tested. Sen. Bill Cassidy (R-La.), who chairs the Senate committee with oversight of HHS, said on X on June 23 that the ACIP meeting scheduled for June 25-26 should be delayed until ACIP is staffed with less biased, more knowledgeable members.
HHS officials have suggested that Kennedy intends to throw out the whole vaccine safety system and start over. In a statement to KFF Health News, spokesperson Emily Hilliard accused the Centers for Disease Control and Prevention of “suppressing information about vaccine injuries” and said the Vaccine Adverse Event Reporting System, or VAERS, and the Vaccine Safety Datalink, monitoring systems in place since the early 1990s, were “designed to fail” and “templates of regulatory malpractice.”
She said HHS was “building surveillance systems that will accurately measure vaccine risks as well as benefits.” Asked for details, Hilliard did not respond. The HHS budget proposal for fiscal year 2026 makes no mention of vaccine safety programs.
The current U.S. vaccine safety system began with passage of the 1986 National Childhood Vaccine Injury Act, which aimed at stabilizing the vaccine supply by stopping lawsuits against drug companies. At the time they were getting out of the vaccine business, finding it less risky and more profitable to produce drugs for chronic diseases. The act set up the National Vaccine Injury Compensation Program and VAERS.
CDC vaccine safety officer Robert Chen built on VAERS to create the Vaccine Safety Datalink, which looks for evidence of vaccine harms in electronic health records. In 2001, the CDC set up the Clinical Immunization Safety Assessment project, through which a network of eight U.S. centers study rare vaccine reactions.
But the vaccine safety system’s budget has been stuck at around $20 million most years. That hasn’t been enough to study rare but recurring vaccine injuries in a serious way.
“$20 million to look at all the licensed vaccines in this country is woefully inadequate,” Dan Salmon, director of Johns Hopkins University’s Institute for Vaccine Safety, said at a recent conference. Without a more serious commitment, he said, “our products won’t be as safe as they could be.”
As an HHS vaccine safety official during the Clinton, Bush, and Obama administrations, Salmon helped write two plans that called for expanded safety work, including examinations of whether the vaccine schedule might be contributing to an increase in allergic diseases.
A little-publicized CDC-led 2022 study suggested that the aluminum salts added to make some pediatric vaccines more effective might cumulatively be linked to an increased incidence of asthma. Salmon thinks it merits further research — to refute or confirm the results. The issue “should have been studied decades ago,” he said.
A Failed Compensation Program
Vaccine advocates and skeptics agree that the government program established to compensate people injured by vaccines or other public health measures during emergencies — the Countermeasures Injury Compensation Program — has miserably failed those with covid vaccine-related injuries. As of June 1, the program has compensated only 39 of nearly 14,000 people who have filed covid vaccine injury claims. Only five have gotten awards of more than $10,000.
The program is far less generous and user-friendly than the National Vaccine Injury Compensation Program, funded since 1988 by an excise tax on vaccines. It has paid out about 12,000 awards worth a total of $4.8 billion, mostly to care for vaccine-injured children.
People with covid vaccine injuries, however, are stuck in a kind of limbo, often without clear medical options. It’s unfair and “very bad for public confidence in vaccines,” said Amy Pisani, CEO of Vaccinate Your Family, a nonprofit that promotes vaccination, speaking on a panel with Salmon at the April conference.
Kennedy has condemned the injury compensation system for shielding drug companies from lawsuits, but if he wants to help patients he should move covid vaccines into the program, said Renée Gentry, who runs a law clinic for vaccine injuries at George Washington University Law School.
“The longer you hang these people out to dry, you are creating a perfect storm where nobody’s going to want to get vaccinated,” she said.
A Curtailed Vaccine Injury Investigation
In December 2021, the NIH’s Nath emailed Dressen and the other patients suffering from postvaccine problems that he could no longer help them. He told Science magazine that investigating vaccine side effects was a delicate business when public health leaders were urging everyone to get their shots.
“You have to be very careful. You can make the wrong conclusion,” he said. “The implications are huge.”
Nath published an article in 2023 calling for more investigation of vaccine-related neurological conditions. His lab also released preliminary results from its study of Dressen and the other patients, which pointed to helpful treatments. But the paper has not been published in a peer-reviewed journal.
And none of the federal agencies recognized that her condition might be vaccine-related, said Dressen, who received her shot in an AstraZeneca clinical trial. (FDA officials were concerned about the vaccine’s side effect profile, and it was never distributed in the United States.)
Dressen said Nath’s withdrawal left her distraught.
“They reassure everyone there’s a safety net, but every one of those things is a complete failure,” she said. “I didn’t speak out because of my injury. The reason I spoke out is because of what happened after my injury.”
“People are suffering, and we don’t yet understand why or how to help them,” said Harlan Krumholz, a cardiologist who is part of a research project at Yale University led by immunobiologist Akiko Iwasaki that includes hundreds of patients with postvaccine issues. “Worse, many of them have felt ignored or dismissed by the very institutions meant to help and support them.”
The NIH appears not to have funded studies of postvaccine syndrome, whose symptoms mimic those of long covid. Yet genetic studies could help “to determine who might be more susceptible to this condition,” Iwasaki said in an email.
Such research appears ideal for the Clinical Immunization Safety Assessment, established to examine rare vaccine reactions. But the network has published nothing on covid vaccines, nor are any trials related to the issue listed on government websites.
German researchers have studied postvaccine syndrome in more depth. Germany’s Paul-Ehrlich-Institut, a sort of FDA for vaccines, reported in December that it had reviewed 919 cases of postvaccine syndrome that were similar to long covid — a rate of about 1 in 100,000 vaccinations. It said causality was hard to establish because of the diverse symptoms reported.
Can Vaccine Safety Move Out of HHS?
In 1999, Chen, the CDC scientist, published an article suggesting that to speed studies and boost public confidence, vaccine safety should be moved to an independent agency, perhaps modeled on the National Transportation Safety Board, that could subpoena records from industry or other government agencies for its crash investigations.
Although HHS did not respond to a query about the idea, vaccine litigant Aaron Siri, who has been a personal attorney to Kennedy, told KFF Health News that Kennedy supported it.
In the meantime, some vaccinologists hope they can persuade Kennedy to spend more money on good vaccine safety research.
While it is “very painful to watch” what Kennedy is doing to HHS vaccine policy, “it would behoove us to find common ground,” Salmon said at the conference. That doesn’t mean “funding terrible studies to confirm hypotheses that some people believe,” he added.
Though that is what many see Kennedy doing. One of his first moves as secretary was to hire David Geier, whose previous publications are considered junk science by many in the field, to conduct a review of vaccine links to autism. Studies around the world have thoroughly debunked such a connection.
Building on an Existing System
When HHS’ Vaccine Safety Datalink was set up in the early 1990s, it was the envy of the world. There are now also good systems in Denmark, England, Israel, and Australia, but the U.S. system has worked pretty well, said Steve Black, who co-directed the Kaiser Permanente Vaccine Study Center from 1985 until 2007.
The Vaccine Safety Datalink was largely responsible for the 1999 removal of a rotavirus vaccine that triggered rare intestinal disorders in babies. And its discovery of a rare but deadly side effect helped keep the AstraZeneca covid vaccine off the U.S. market and led to the removal of the Johnson & Johnson vaccine, Black said. It also helped pinpoint myocarditis soon after young men began getting mRNA shots in 2021.
Since 2019, Black has co-directed an ambitious, 30-country consortium called the Global Vaccine Data Network, which enables vaccine safety analyses across massive, diverse populations around the world.
The group was just beginning its study of genetic predispositions to myocarditis when the Trump administration withdrew a $2 million CDC payment, halting the work.
An email from the Department of Government Efficiency, or DOGE, “asked a bunch of irrelevant questions like, Had we ever been funded by China? Did we have collaborators in Europe?” It ordered the network to cease and desist with no due process or means of appeal, Black said.
Research funded by the grant had progressed to the point of finding seven genetic variants known to be related to cardiac inflammation in people who got myocarditis postvaccination, said Bruce Carleton, the lead investigator, at the University of British Columbia. Work remains, but the data suggests a $6 test could clear vulnerable patients before they are vaccinated, Carleton said.
“Millions got mRNA vaccines. Very few got myocarditis,” Black said. “The public would like to know, ‘Am I at risk?’ Genetics can answer that.”
The CDC has been an honest broker of vaccine safety information, Black added, but if taking the issue out of HHS would improve public confidence, he’s for it.
Vaccines need to be safer, Dressen said, but the idea of banning them doesn’t sit well with her.
“There’s the crowd that wants mRNA vaccines to be pulled off the market, but that’s not going to fix the problem. Vaccines are not going to go away,” she said.
As of June 5, a patient group she leads had provided $1.2 million to 162 people needing medical care for injuries they attributed to vaccination.
Meanwhile, the federal countermeasures program, which doles out covid vaccine injury awards through a trust, has committed $2.6 million for one patient and $370,376 for another. As of June 1, it had granted an additional 37 claimants a grand total of $198,809.92.
This article first appeared on KFF Health News and is republished here under a Creative Commons license.
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BRIDGEPORT, W.Va. — By the time Eric Tennant was diagnosed in 2023 with a rare cancer of the bile ducts, the disease had spread to his bones. He weighed 97 pounds and wasn’t expected to survive a year with stage 4 cancer.
Two years later, grueling rounds of chemotherapy have slowed the cancer’s progress, even as it has continued to spread. But chemotherapy has also ravaged Tennant’s body and his quality of life.
Recently, however, the 58-year-old had reason to hope things would improve. Last fall, his wife, Rebecca, learned of a relatively new, noninvasive procedure called histotripsy, which uses targeted ultrasound waves to destroy tumors in the liver. The treatment could extend his life and buy him more downtime between rounds of chemotherapy.
Early this year, Tennant’s oncologist agreed he was a good candidate since the largest tumor in his body is in his liver. But that’s when his family began fighting another adversary: their health insurer, which decided the treatment was “not medically necessary,” according to insurance paperwork.
Health insurers issue millions of denials every year. And like the Tennants, many patients find themselves stuck in a convoluted appeals process marked by long wait times, frustrating customer service encounters, and decisions by medical professionals they’ve never met who may lack relevant training.
Recent federal and state efforts, as well as changes undertaken by insurance companies themselves, have attempted to improve a 50-year-old system that disproportionately burdens some of the sickest patients at the worst times. And yet many doctors complain that insurance denials are worse than ever as the use of prior authorization has ramped up in recent years, reporting by KFF Health News and NBC News found.
When the Tennant family was told histotripsy would cost $50,000 and insurance wouldn’t cover it, they appealed the denial four times.
“It’s a big mess,” said Rebecca Tennant, who described feeling like a pingpong ball, bouncing between the insurer and various health care companies involved in the appeals process.
“There’s literally nothing we can do to get them to change,” she said in an April interview with KFF Health News. “They’re, like, not accountable to anyone.”
While the killing of UnitedHealthcare chief executive Brian Thompson in December incited a fresh wave of public fury about denials, there is almost no hope of meaningful change on the horizon, said Jay Pickern, an assistant professor of health services administration at Auburn University.
“You would think the murder of a major health insurance CEO on the streets of New York in broad daylight would be a major watershed moment,” Pickern said. Yet, once the news cycle died down, “everything went back to the status quo.”
An Unintended Consequence of Health Reform?
Prior authorization varies by plan but often requires patients or their providers to get permission (also called precertification, preauthorization, or preapproval) before filling prescriptions, scheduling imaging, surgery, or an inpatient hospital stay, among other expenses.
The practice isn’t new. Insurers have used prior authorization for decades to limit fraud, prevent patient harm, and control costs. In some cases, it is used to intentionally generate profits for health insurers, according to a 2024 U.S. Senate report. By denying costly care, companies pay less for health care expenses while still collecting premiums.
“At the end of the day, they’re a business and they exist to make money,” said Pickern, who wrote about the negative impacts of prior authorization on patient care for The American Journal of Managed Care.
For most patients, though, the process works seamlessly. Prior authorization mostly happens behind the scenes, almost always electronically, and nearly all requests are quickly, or even instantly, approved.
But the use of prior authorization has also increased in recent years. That’s partly due to the growth of enrollment in Medicare Advantage plans, which rely heavily on prior authorization compared with original Medicare. Some health policy experts also point to the passage of the Affordable Care Act in 2010, which prohibited health insurers from denying coverage to patients with preexisting conditions, prompting companies to find other ways to control costs.
“But we can’t really prove this,” said Kaye Pestaina, director of the Program on Patient and Consumer Protection at KFF, a health information nonprofit that includes KFF Health News. Health insurers haven’t been historically transparent about which services require prior authorization, she said, making it difficult to draw comparisons before and after the passage of the Affordable Care Act.
Meanwhile, many states are looking to overhaul the prior authorization process.
In March, Virginia passed a law that will require health insurers to publicly post a list of health care services and codes for which prior authorization is required. A North Carolina bill would require doctors who review patient appeals to have practiced medicine in the same specialty as the patient’s provider. The West Virginia Legislature passed bills in both 2019 and 2023 requiring insurers to respond to nonurgent authorization requests within five days and more urgent requests within two days, among other mandates.
And in 2014, the South Carolina Department of Health and Human Services temporarily lifted all prior authorization requirements for Medicaid beneficiaries seeking rehabilitative behavioral health services.
Federal rules to modify prior authorization that were introduced by the first Trump administration and finalized by the Biden administration are set to take effect next year, with the aim of streamlining the process, reducing wait times, and improving transparency.
These changes were supported by AHIP, a trade group that represents health insurers.
‘Sick With Little Recourse’
But the new federal rules won’t prevent insurance companies from denying payment for doctor-recommended treatment, and they apply only to some categories of health insurance, including Medicare Advantage and Medicaid. Nearly half the U.S. population is covered by employer-sponsored plans, which remain untouched by the new rules.
For some patients, the stakes couldn’t be higher.
On May 12, Alexander Schrift, 35, died at home in San Antonio, Florida, less than two months after his insurance company refused to cover the cancer drug ribociclib. It’s used to treat breast cancer but has shown promise in treating the same type of brain tumor Schrift was diagnosed with in 2022, according to researchers at the Dana-Farber Cancer Institute in Boston and the Institute of Cancer Research in London.
But Schrift’s insurance company refused to pay. The Right to Try Act, signed by President Donald Trump in 2018, entitles patients with terminal illnesses to try experimental drugs, but it does not obligate insurance companies to pay for them.
In May, Sheldon Ekirch, 30, of Henrico, Virginia, said her parents withdrew money from their retirement savings to pay for treatment denied by her health insurance company.
Ekirch, who was diagnosed with small fiber neuropathy in 2023, was recommended by her doctor to try an expensive blood plasma treatment called intravenous immunoglobulin to ease her near-constant pain. In April, a state agency charged with reviewing insurance denials upheld her insurer’s decision. Out-of-pocket, the treatment may cost her parents tens of thousands of dollars.
“Never in a million years did I think I’d end up here,” Ekirch said, “sick with little recourse.”
Earlier this year, New Jersey congressman Jefferson Van Drew, a Republican, introduced a bill that would eliminate prior authorization altogether. But history suggests that would create new problems.
When South Carolina Medicaid lifted prior authorization for rehabilitative behavioral health services in 2014, the department’s costs for those services skyrocketed from $300,000 to $2 million per week, creating a $54 million budget shortfall after new providers flooded the market. Some providers were eventually referred to the South Carolina Attorney General’s Office for Medicaid fraud investigation. The state Medicaid agency eventually reinstated prior authorization for specific services, spokesperson Jeff Leieritz said.
What happened in South Carolina illustrates a common argument made by insurers: Prior authorization prevents fraud, reduces overspending, and guards against potential harm to patients.
On the other hand, many doctors and patients claim that cost-containment strategies, including prior authorization, do more harm than good.
On Feb. 3, 2024, Jeff Hall of Estero, Florida, became paralyzed from the neck down and spent weeks in a coma after he suddenly developed Guillain-Barré Syndrome. The cause of his illness remains unknown.
Hall, now 51, argued that the Florida Blue health insurance plan he purchased on the federal marketplace hindered his recovery by capping the number of days he was allowed to remain in an acute rehabilitation hospital last year.
Hall said that after he was forced to “step down” to a lower-level nursing facility, his health deteriorated so rapidly within six days that he was sent to the emergency room, placed on a ventilator, and required a second tracheostomy. Hall believes the insurance company’s coverage limits set his recovery back by months — and, ironically, cost the insurer more. His wife, Julie, estimated Jeff’s medical bills have exceeded $5 million, and most of his care has been covered by his insurer.
“Getting better is not always the goal of an insurance company. It’s a business,” Jeff Hall said. “They don’t care.”
In a prepared statement, Florida Blue spokesperson Jose Cano said the company understands “it can be a challenge when a member reaches the limit of their coverage for a specific service or treatment.” He encouraged members affected by coverage limits to contact their health care providers to “explore service and treatment options.”
A ‘Rare and Exceptional’ Reversal
Back in West Virginia, Eric and Rebecca Tennant say they are realistic about Eric’s prognosis.
They never expected histotripsy to cure his cancer. At best, the procedure could buy him more time and might allow him to take an extended break from chemotherapy. That makes it worth trying, they said.
As a safety instructor with the West Virginia Office of Miners’ Health Safety and Training, Eric Tennant is a state employee and is insured by West Virginia’s Public Employees Insurance Agency.
As the Tennants pleaded with the state insurance agency to cover histotripsy, they faced a list of other companies involved in the decision, including UMR, a UnitedHealthcare subsidiary that contracts with West Virginia to manage the public employee plans, and MES Peer Review Services, a Massachusetts company that upheld the insurer’s decision in March, citing that histotripsy is “unproven in this case and is not medically necessary.”
None of their appeals worked. After KFF Health News and NBC News reached out to West Virginia’s Public Employees Insurance Agency with questions for this article, the agency changed its mind, explaining the insurer had consulted with medical experts to further evaluate the case.
“This decision reflects a rare and exceptional situation” and does not represent a change in the Public Employees Insurance Agency’s overall coverage policies,” Director Brent Wolfingbarger said in a prepared statement to KFF Health News.
In a separate prepared statement, UnitedHealthcare spokesperson Eric Hausman said the company sympathizes with “anyone navigating through life-threatening care decisions.”
“Currently, there is no evidence that histotripsy is as effective as alternative treatment options available,” he said in late May, after the earlier insurance denials were reversed, “and its impact on survival or cancer recurrence is unknown.”
MES Peer Review Services did not respond to a request for an interview.
Meanwhile, Rebecca Tennant worries it might be too late. She said her husband was first evaluated for histotripsy in February. But his health has recently taken a turn for the worse. In late May and early June, she said, he spent five days in the hospital after developing heart and lung complications.
Eric Tennant is no longer considered a viable candidate for histotripsy, his wife said, although the Tennants are hopeful that will change if his health improves. Scans scheduled for July will determine whether his cancer has continued to progress. Rebecca Tennant blames her husband’s insurance plan for wasting months of their time.
“Time is precious,” she said. “They know he has stage 4 cancer, and it’s almost like they don’t care if he lives or dies.”
*NBC News health and medical unit producer Jason Kane and correspondent Erin McLaughlin contributed to this report.
This article first appeared on KFF Health News and is republished here
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During his first administration, President Donald Trump’s top health officials gave North Carolina permission to use Medicaid money for social services not traditionally covered by health insurance. It was a first-in-the-nation experiment to funnel health care money into housing, nutrition, and other social services.
Some poor and disabled Medicaid patients became eligible for benefits, including security deposits and first month’s rent for housing, rides to medical appointments, wheelchair ramps, and even prescriptions for fresh fruits and vegetables.
Such experimental initiatives to improve the health of vulnerable Americans while saving taxpayers on costly medical procedures and expensive emergency room care are booming nationally. Without homes or healthy food, people risk getting sicker, becoming homeless, and experiencing even more trouble controlling chronic conditions such as diabetes and heart disease.
Former President Joe Biden encouraged states to go big on new benefits, and the availability of social services exploded in states red and blue. Since North Carolina’s launch, at least 24 other states have followed by expanding social service benefits covered by Medicaid, the health care program for low-income and disabled Americans — a national shift that’s turning a system focused on sick care into one that prioritizes prevention. And though Trump was pivotal to the expansion, he’s now reversing course regardless of whether evidence shows it works.
In Trump’s second term, his administration is throwing participating states from California to Arkansas into disarray, arguing that social services should not be paid for by government health insurance. Officials at the Centers for Medicare & Medicaid Services, which grants states permission to experiment, have rescinded its previous broad directive, arguing that the Biden administration went too far.
“This administration believes that the health-related social needs guidance distracted the Medicaid program from its core mission: providing excellent health outcomes for vulnerable Americans,” CMS spokesperson Catherine Howden said in a statement.
“This decision prevents the draining of resources from Medicaid for potentially duplicative services that are already provided by other well-established federal programs, including those that have historically focused on food insecurity and affordable housing,” Howden added, referring to food stamps and low-income housing vouchers provided through other government agencies.
Trump, however, has also proposed axing funding for low-income housing and food programs administered by agencies including the departments of Housing and Urban Development and Agriculture — on top of Republican proposals for broader Medicaid cuts.
The pullback has led to chaos and confusion in states that have expanded their Medicaid programs, with both liberal and conservative leaders worried that the shift will upend multibillion-dollar investments already underway. Social problems such as homelessness and food insecurity can cause — or worsen — physical and behavioral health conditions, leading to sky-high health care spending. Medical care delivered in hospitals and clinics, for instance, accounts for only roughly 15% of a person’s overall health, while a staggering 85% is influenced by social factors such as access to healthy food and shelter for sleep, said Anthony Iton, a policy expert on social determinants of health.
Health care experts warn the disinvestment will come at a price.
“It will just lead to more death, more suffering, and higher health care costs,” said Margot Kushel, a primary care doctor in San Francisco and a leading researcher on homelessness and health care.
The Trump administration announced in a March 4 memo that it was rescinding Biden-era guidance dramatically expanding experimental benefits known as health-related social needs. Federal waivers are required for states to use Medicaid funds for most nontraditional social services outside of hospitals and clinics.
Last month, the administration told states that these services, which can also include high-speed internet and storage units, should not be part of Medicaid.
Future waiver requests allowing Medicaid to provide social services — a liberal philosophy — will be considered on a “case-by-case basis,” the administration said. Rather, it has signaled a conservative shift toward requiring most Medicaid beneficiaries to prove that they’re working or trying to find jobs, which puts an estimated 36 million Americans at risk of losing their health coverage.
“What they’re arguing is Medicaid has been expanded far beyond basic health care and it needs to be cut back to provide only basic coverage to those most desperately in need,” said Mark Peterson, a health policy expert at UCLA. “They’re making the case, which is not widely shared by specialists in the health care field, that it’s not the job of taxpayers and Medicaid to pay for all this stuff outside the traditional heath care system.”
Although states have not received formal guidance to end their social experiments, Peterson and other health policy researchers expect the administration not to renew waivers, which typically run in five-year intervals. Worse, legal experts say programs underway could be halted early.
Evidence supporting social investments by Medicaid is still nascent. An expansion in Massachusetts that provided food benefits reduced ER visits and hospitalizations, for instance. But often, it’s a mixed bag.
California is going the biggest, investing $12 billion over five years to provide a slew of new services, from intensive case management to help people with severe behavioral health conditions to housing and food assistance through a pair of federal waivers. The most popular benefits provided by health insurers are those that help homeless people on Medicaid by placing them in apartments or securing beds in recovery homes, covering up to $5,000 for security deposits, and preventing eviction.
Since the CalAIM program launched in 2022, it has served only a small fraction of the state’s nearly 15 million Medicaid beneficiaries, with roughly 577,000 referrals for benefits. Yet it has improved and even saved the lives of some of those lucky enough to get help, including Eric Jones, a 65-year-old Los Angeles resident.
“When I got diabetes, I didn’t know what to do and I had a hard time getting to my medical appointments,” said Jones, who lost his housing this year when his mom died but received services through his Medi-Cal insurer, L.A. Care. “My case manager got me rides to my appointments and also helped me get into an apartment.”
California is considering making some of its social services permanent after the CalAIM waivers expire at the end of 2026. Gov. Gavin Newsom’s administration is adding more housing services, including up to six months of free rent under a third waiver approved by the Biden administration. Medi-Cal officials contended early evidence shows CalAIM has led to better care coordination and fewer hospital and ER visits.
“We are fully committed,”
, a deputy director for the state Department of Health Care Services, which administers the program. “We have invested so much.”
Health insurers, which deliver Medicaid coverage and receive greater funding to cover these additional benefits, say they’re worried the Trump administration will end or curtail the programs. “If we do things the same old way, we’re just going to generate the same old results — people getting sicker and health care costs continuing to rise,” said Charles Bacchi, president and CEO of the California Association of Health Plans, which represents insurers.
Industry leaders say the expansion is already changing lives.
“We believe wholeheartedly that housing is health, food is health, so seeing these programs disappear would be devastating,” said Kelly Bruno-Nelson, executive director of Medi-Cal for CalOptima Health, a health insurance provider in Orange County.
Oregon is also providing low-income Medicaid patients with a range of new services, including home-delivered healthy meals and rental payment assistance. Residents can even qualify for air conditioners, heaters, air filters, power generators, and mini fridges. State Medicaid officials say they remain committed to providing the benefits but worry about federal cuts.
“Climate change and housing instability are huge indicators of poor health,” said Josh Balloch, vice president of health policy and communications at AllCare Health, a Medicaid insurer in Oregon. “We hope to prove to the federal government that this is a good return on their investment.”
But even as the Trump administration curtails waivers, it is retaining discretion to provide social services in Medicaid, just on a smaller scale. Supporters say it’s fair to scrutinize where to draw the line on taxpayer spending, arguing that there isn’t always a direct health connection.
“We’re seeing these things increase, with the free rent, and we’re seeing some states pay for free internet, paying for furniture,” said Kody Kinsley, who previously served as North Carolina’s top health official. “We know there’s evidence for food and housing, but with all of these new benefits, we need to look closely at the evidence and the linkage to what actually drives health.”
Current North Carolina officials say they’re confident the new social services Medicaid provides in their state have resulted in better health and lower overall spending on expensive and acute care. Medicaid recipients there can even use the program to buy farm-fresh produce.
While it’s too soon to know whether these experiments have been effective elsewhere in the United States, early evidence in North Carolina shows promise: The state had saved $1,020 per participant a year into its experiment — operating in mostly rural counties — by reducing ER trips and hospitalizations.
State health officials also touted the economic benefits of driving business to family farms, home improvement contractors, and community-based organizations providing housing and social services.
“I welcome the challenge of demonstrating the effectiveness of our programs. It’s making for healthier people and healthier budgets,” said Jay Ludlam, deputy secretary for North Carolina’s Medicaid program. “Family farms that were on the verge of collapse after Hurricane Helene are now benefiting from a steady income while they also serve their community.”
NOW READ:America said it was ready for change — until a Black man was put in charge
*This article was produced byKFF Health News, which publishesCalifornia Healthline, an editorially independent service of theCalifornia Health Care Foundation.
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PHOENIX — As an Arizona bill to block people from using government aid to buy soda headed to the governor’s desk in April, the nation’s top health official joined Arizona lawmakers in the state Capitol to celebrate its passage.
Health and Human Services Secretary Robert F. Kennedy Jr. said to applause that the legislation was just the start and that he wanted to prevent federal funding from paying for other unhealthy foods.
“We’re not going to do that overnight,” Kennedy said. “We’re going to do that in the next four years.”
Those words of caution proved prescient when Arizona’s Democratic governor, Katie Hobbs, vetoed the bill a week later. Nevertheless, state legislation to restrict what low-income people can buy using Supplemental Nutrition Assistance Program benefits is gaining momentum, boosted by Kennedy’s touting it as part of his “Make America Healthy Again” platform. At least 14 states have considered bills this year with similar SNAP restrictions on specific unhealthy foods such as candy, with Idaho and Utah passing such legislation as of mid-April.
Healthy food itself isn’t largely a partisan issue, and those who study nutrition tend to agree that reducing the amount of sugary food people eat is a good idea to avoid health consequences such as heart disease. But the question over the government’s role in deciding who can buy what has become political.
The organization largely behind SNAP restriction legislation is the Foundation for Government Accountability, a conservative policy think tank out of Florida, and its affiliated lobbying arm, which has used the name Opportunity Solutions Project.
FGA has worked for more than a decade to reshape the nation’s public assistance programs. That includes SNAP, which federal data shows helps an average of 42 million people afford food each month. It also advocates for ways to cut Medicaid, the federal-state program that connects 71 million people to subsidized health care, including efforts in Idaho and Montana this year.
FGA’s proposals often seek to limit who taps into that aid and the help they receive. Those backing the group’s mission say the goal is to save tax dollars and help people lift themselves out of poverty. Critics argue that FGA’s proposals are a backdoor way to cut off aid to people who need it and that making healthy food and health care more affordable is a better fix.
Now, FGA sees more room for change under the Trump administration and the Kennedy-led health department, calling 2025 a “window of opportunity for major reform,” according to its latest annual report.
A Vision for Limiting Government Benefits
Tarren Bragdon, a former Maine legislator, founded FGA in 2011 to promote policies to “free millions from government dependency and open the doors for them to chase their own American Dream,” he said in a statement on FGA’s website. The main foundation started out as a staff of three with about $60,000 in the bank. As of 2023, it had a budget of more than $15 million and a team of roughly 64, according to the latest available tax documents, and that’s not counting the lobbying arm.
The foundation got early funding from a grant from the State Policy Network, which has long backed right-leaning think tanks with ties to conservative activists including brothers Charles and David Koch.
FGA declined several interview requests for this article.
In recent years, the nonprofit helped draft a 2017 Mississippi law, the Jackson Free Press found, which intensified eligibility checks for public aid that made it more difficult for some applicants to qualify. It successfully pushed a 2023 effort in Idaho to impose work requirements for food benefits that health care advocates said led some recipients to lose access.
The same year, the group helped pass SNAP restrictions affecting eligibility in Iowa. Since those restrictions have taken effect, the Food Bank of Iowa has seen a record number of people show up at its pantries amid rising grocery prices and a scaling back of covid pandemic-era federal support, said Annette Hacker, a vice president at the nonprofit.
Part of the group’s strategy is to pass legislation state by state, with the idea that the crush of new laws will increase pressure on the federal government. For example, states can’t limit what food is purchased through SNAP without federal approval through a waiver process. And in the past, some of FGA’s efforts have stalled because states never got that approval.
Kennedy’s agenda now echoes some of FGA’s key messages, and he has said states can expect approval of their waivers. Meanwhile, congressional leaders are eyeing nationwide Medicaid cuts and work requirements, which FGA considers among its major issues. The foundation also has a connection working inside the administration: Its former policy director, Sam Adolphsen, was tapped to advise President Donald Trump on domestic matters.
“We’re excited to fight from Topeka to Washington, D.C., as opposed to Washington, D.C., to Topeka,” Roy Lenardson, FGA’s state government affairs director, told Kansas lawmakers in February when testifying in support of SNAP legislation there.
Shaping State Policies
In the states, FGA has become known as a conservative “thought leader,” said Brian Colby, vice president of public policy for Missouri Budget Project, a progressive nonprofit that provides analysis of state policy issues.
“Conservatives used to try to chop away at the federal budget,” Colby said. “These guys are doing it at the state level.”
In its 14 years, FGA has created a playbook to shape state policy discussions around public benefits behind the scenes. In Montana, retired Republican legislator Cary Smith, who worked with FGA, said not all of the think tank’s ideas split along party lines.
“They offer a buffet of options,” he said. “Their agenda is making government accountable; it’s in the name.”
He said besides drafting legislation, FGA provides talking points and data to help policymakers support their arguments. “They would go in and would say, ‘This is what Medicaid fraud is costing us,’” Smith said. “That would be the number you’d want to use in your bill.”In January, FGA released a memo for states to “stop taxpayer-funded junk food.” In February, Stateline reported that Wyoming Republican state Rep. Jacob Wasserburger said the group asked him to sponsor a SNAP restriction bill. The state sponsor of similar legislation in Missouri has repeated at least one of FGA’s talking points, as reported by the Missouri Independent. In Arizona, Republican Rep. Leo Biasiucci, who sponsored the SNAP legislation there, told KFF Health News FGA was behind that bill as well.
Opponents of such bills argue the proposals are not as simple as they sound. Amid debate on a SNAP bill in Montana, Kiera Condon, with the Montana Food Bank Network, testified the legislation would force grocery store workers to sort through what counts as soda or candy, “which could result in retailers not participating in SNAP at all.”
State lawmakers tabled the Montana bill in April.
Montana legislators also easily passed a bill to extend the state’s Medicaid expansion program even after FGA began publishing a series of papers that asserted the program was “breaking” Montana’s budget. FGA had presented data saying most Montanans on the program don’t work, which state data refutes.
Ed Bolen, who leads food aid strategies at the left-leaning Center on Budget and Policy Priorities think tank, said FGA has a pattern of proposing technical changes to existing laws and “unworkable work requirements” that cause people to lose benefits.
After working with policymakers in Kansas for a decade, FGA helped pass legislation that limited how long people can access cash assistance, added work requirements to SNAP, and banned the state from spending federal or state funds to promote public aid. Many of those changes came through 2015 legislation known as the “HOPE Act” drafted by FGA, The Washington Post reported.
Analysis from Kansas Appleseed, an advocacy organization for low-income Kansans, found the SNAP caseload sharply declined after the bill was enacted because of the new hurdles, dropping from 140,000 households in January 2014 to 90,000 as of January 2020.
“It’s death by a thousand cuts,” said Karen Siebert, an adviser for Harvesters, a community food bank network in Kansas and Missouri. “Some of these FGA proposals are such complex policies, it’s hard to argue against and to explain the ripple effects.”
In 2024, the foundation produced more than two dozen videos featuring state politicians from across the nation touting the organization’s goals and dozens of research papers arguing public benefits are wrecking state budgets. FGA also has its own polling team to produce data out of the states it’s working to influence.
The organization released a list of 14 states it labeled as “redder and better” places to exert more influence. That included Idaho, where the group has four registered lobbyists in the state Capitol.
In 2023, FGA helped present and successfully lobby for legislation there to require people receiving food aid to work at least 80 hours a month. The organization called the resulting law “landmark welfare reform” years in the making.
And this year, Idaho lawmakers passed more requirements for people enrolled in Medicaid who can work. FGA staffers worked with one of the co-sponsors of the legislation on a similar bill last year that failed, then again this year. A compromise bill passed with FGA’s backing, marking another victory for the foundation.
David Lehman, a lobbyist for the Idaho Association of Community Providers, which represents health organizations that have opposed FGA bills, said Idaho illustrates how FGA works with sympathetic lawmakers in conservative states to gain more ground.
“They’re pushing an already rolling rock downhill,” he said.
KFF Health News is a national newsroom
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Overcome by worries, Lynette Isbell dialed a mental health hotline in April 2022. She wanted to talk to someone about her midlife troubles: divorce, an empty nest, and the demands of caring for aging parents with dementia.
“I did not want to keep burdening my family and friends with my problems,” Isbell said.
But she didn’t find the sympathetic ear she was hoping for on the other end. Frustrated, she hung up. Little did she know ending that call would set off events she would regret.
Police arrived at her home in Terre Haute, Indiana, handcuffed her, and had her committed to a hospital, records show, resulting in more than $12,000 in hospital charges.
“The whole thing was an absolute, utter, traumatic nightmare,” she said.
Isbell’s call for help represented the need for a new approach to crisis calls just as the nation was readying to flip the switch to a revamped response system for mental health. Using just three digits — 988 — people could call or text for help from anywhere at any time starting in July 2022. Federal officials viewed the launch of 988 “as the linchpin” to reenvision the mental health crisis system. The idea was to reduce the reliance on police and the burden on emergency rooms, while eliminating the stigma of seeking help.
But recent federal funding and staffing cuts undermine the future of the 988 program and threaten to erase progress made in Indiana and elsewhere, mental health advocates said.
The Trump administration cut staffing at the Substance Abuse and Mental Health Services Administration, the federal office that oversees 988, in recent weeks. It also ended $1 billion of its grants that a number of states relied on this year to help fund their 988 systems, said Stephanie Pasternak, state affairs director of the National Alliance on Mental Illness. While a judge temporarily paused grant cutsfor 23 states that contested them, the trims to other states — including Indiana — have moved forward.
Between the SAMHSA cuts andpotential reductions to Medicaid, another crucial funding stream for these services, Pasternak and others are concerned about what this means for 988’s future.
Any disruption to federal funding streams is “gravely impactful,” said Zoe Frantz, CEO of the Indiana Council of Community Mental Health Centers. “We have put a lot of time, talent, and treasure — from the state to providers — in trying to build the system,” Frantz said. “We can’t go back.”
After Isbell hung up her call, a member of the Suicide Prevention Hotline, the crisis line formerly available, phoned the Vigo County Sheriff’s Office and told a dispatcher Isbell was “thinking of committing suicide,” according to the sheriff’s report obtained by KFF Health News.
Years later, Isbell maintains she never said this. “I’ve never been actively suicidal.”
But two officers drove to Isbell’s home.
When they arrived, Isbell was sitting on her back porch on a sunny day with trees just starting to bud. The officer’s report alleged she admitted to thinking about driving her car into a tree, wanting doctor-assisted suicide, and fantasizing about a semitruck hitting her.
She contends active suicidal ideation with a plan is different than the overwhelmed feelings she had that day.
“It was like a childhood game of telephone, only not at all funny,” she said. What she said became distorted and left her no recourse.
The officers walked her to a squad car, where they handcuffed her before transporting her to Terre Haute Regional Hospital, according to dashcam video obtained from a public records request. Neighbors watched as she was taken away.
“I don’t know why I needed to be handcuffed,” she said. “It was demoralizing.”
The Vigo County Sheriff’s Office did not respond to requests for comment about Isbell’s case.
Isbell said being hospitalized against her wishes humiliated her and forced her to battle confusing medical bills for months. An itemized bill shows the hospital charged $12,772 for her overnight stay. After insurance, Isbell was on the hook for roughly $2,800. By comparison, a one-night stay in the presidential suite at the new Terre Haute Casino Resort is $2,471. Terre Haute Regional Hospital spokesperson Ann Marie Foote said Isbell’s bill was “discounted down” to $1,400.
“Our highest priority is always the safety and well-being of patients,” Foote said.
According to Isbell’s medical records, doctors there said “she was very stressed” and “just wanted to speak to someone” and reiterated “she was not suicidal.” They said her anxiety “is increased and made worse by being in here.”
She had “anxiety” and a “depressed mood,” and, according to medical records signed by a psychiatrist there, “she does not meet current criteria for involuntary hospitalization.” She was discharged the next day.
Upset by how she was treated, she contacted 988, the sheriff’s office, and the hospital.
In response to KFF Health News’ questions about Isbell’s experience, Michele Holtkamp, a spokesperson at the time for Indiana’s Family and Social Services Administration, said that before the launch of 988, “the state did not have oversight of individual crisis lines and how they responded.”
After 988 began, Isbell received a follow-up email from an executive with Mental Health America, introducing her to the director of Indiana’s 988 hotline, Kara Biro.
“I shared your story with her and we agree that we would love to get you to help with a training video,” wrote Brandi Christiansen, CEO of Mental Health America-Wabash Valley Region. She explained it would provide workers an opportunity to understand the real-life implications an “outcall can have on a human being.” The video has yet to happen, Isbell said.
The sheriff’s department also asked for her input to improve the process, she said.
Isbell saw those as signs of a turnaround. For mental health leaders in Indiana, 988 represented a “springboard to transform and build” a new response system, according to a 2022 Indiana Behavioral Health Commission report. Too often, the report said, Indiana’s “ineffective and inefficient” system had relied heavily on police and emergency rooms.
Before 988, the state hotline also relied almost entirely on volunteers, complicating efforts to standardize responses, said Jay Chaudhary, a former director of Indiana’s Division of Mental Health and Addiction, who led the state’s transition to 988.
“When somebody makes the really brave step to seek help with mental health care, that system better be ready to catch them,” he said.
Today, Indiana ranks among the 10 states with the highest 988 answer rates, a sign it can handle the demand, said Laurel Stine, chief advocacy and policy officer with the American Foundation for Suicide Prevention.
In Indiana, behavioral health professionals now lead the response via mobile crisis teams, not law enforcement, such as the officers who handcuffed Isbell.
As of July, mobile crisis teams were available to 4.8 million people living in 65 of Indiana’s 92 counties, reaching roughly 71% of residents, according to a 2024 report from the behavioral health commission. In the first half of last year, mobile crisis teams were dispatched 3,080 times for help. Law enforcement officers were involved in about 1% of those cases and roughly 10% resulted in a trip to the emergency room, according to the report.
Similar efforts have occurred nationwide since the 2022 launch. The 988 hotline received 4.8 million calls, texts, and chats during its first year, which is roughly nine times a minute, according to Substance Abuse and Mental Health Services Administration data.
But the federal government has terminated numerous grants earmarked for Indiana and other states to tackle mental health and substance use issues. Still, SAMHSA spokesperson Danielle Bennett said the 988 hotline is a “critical function” and that the federal government “will never compromise” protecting people experiencing a crisis. The hotline, Bennett said, “continues daily, life-saving work.”
The Indiana agency tasked with overseeing 988 had more than $98 million in SAMHSA grants but received 73% of that as of March 24, when the grants were terminated, according to a government list of cuts. That leaves Indiana $26 million short.
Some federal grants were passed through to local organizations, including one group that received grant money for “mobile crisis units,” according to an online grant summary. In a statement, Indiana Family and Social Services Administration spokesperson James Vaughn confirmed it received notice of the terminated SAMHSA grants but declined to provide details other than to say it is “working to minimize the impact to Hoosiers.”
Isbell hopes the 988 option doesn’t disappear for those who need a hand, not handcuffs.
She dealt with the fallout of that fateful call for a long time. After more than a year, she said, she paid the $1,400 bill to put the ordeal behind her.
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President Donald Trump’s firings at the Department of Health and Human Services included the entire office that sets federal poverty guidelines, which determine whether tens of millions of Americans are eligible for health programs such as Medicaid, food assistance, child care, and other services, former staff said.
The small team, with technical data expertise, worked out of HHS’ Office of the Assistant Secretary for Planning and Evaluation, or ASPE. Their dismissal mirrored others across HHS, which came without warning and left officials puzzled as to why they were “RIF’ed” — as in “reduction in force,” the bureaucratic language used to describe the firings.
“I suspect they RIF’ed offices that had the word ‘data’ or ‘statistics’ in them,” said one of the laid-off employees, a social scientist whom KFF Health News agreed not to name because the person feared further recrimination. “It was random, as far as we can tell.”
Among those fired was Kendall Swenson, who had led development of the poverty guidelines for many years and was considered the repository of knowledge on the issue, according to the social scientist and two academics who have worked with the HHS team.
The sacking of the office could lead to cuts in assistance to low-income families next year unless the Trump administration restores the positions or moves its duties elsewhere, said Robin Ghertner, the fired director of the Division of Data and Technical Analysis, which had overseen the guidelines.
The poverty guidelines are “needed by many people and programs,” said Timothy Smeeding, a professor emeritus of economics at the La Follette School of Public Affairs at the University of Wisconsin. “If you’re thinking of someone you fired who should be rehired, Swenson would be a no-brainer,” he added.
Under a 1981 appropriations bill, HHS is required annually to take Census Bureau poverty-line figures, adjust them for inflation, and create guidelines that agencies and states use to determine who is eligible for various types of help.
There’s a special sauce for creating the guidelines that includes adjustments and calculations, Ghertner said. Swenson and three other staff members would independently prepare the numbers and quality-check them together before they were issued each January.
Everyone in Ghertner’s office was told last week, without warning, that they were being put on administrative leave until June 1, when their employment would officially end, he said.
“There’s literally no one in the government who knows how to calculate the guidelines,” he said. “And because we’re all locked out of our computers, we can’t teach anyone how to calculate them.”
ASPE had about 140 staff members and now has about 40, according to a former staffer. The HHS shake-up merged the office with the Agency for Healthcare Research and Quality, or AHRQ, whose staff has shrunk from 275 to about 80, according to a former AHRQ official who spoke on the condition of anonymity.
HHS has said it laid off about 10,000 employees and that, combined with other moves, including a program to encourage early retirements, its workforce has been reduced by about 20,000. But the agency has not detailed where it made the cuts or identified specific employees it fired.
“These workers were told they couldn’t come into their offices so there’s no transfer of knowledge,” said Wendell Primus, who worked at ASPE during the Bill Clinton administration. “They had no time to train anyone, transfer data, etc.”
HHS defended the firings. The department merged AHRQ and ASPE “as part of Secretary Kennedy’s vision to streamline HHS to better serve Americans,” spokesperson Emily Hilliard said. “Critical programs within ASPE will continue in this new office” and “HHS will continue to comply with statutory requirements,” she said in a written response to KFF Health News.
After this article published, HHS spokesperson Andrew Nixon called KFF Health News to say others at HHS could do the work of the RIF’ed data analysis team, which had nine members. “The idea that this will come to a halt is totally incorrect,” he said. “Eighty million people will not be affected.”
Secretary Robert F. Kennedy Jr. has so far declined to testify about the staff reductions before congressional committees that oversee much of his agency. On April 9, a delegation of 10 Democratic members of Congress waited fruitlessly for a meeting in the agency’s lobby.
The group was led by House Energy and Commerce health subcommittee ranking member Diana DeGette (D-Colo.), who told reporters afterward that Kennedy must appear before the committee “and tell us what his plan is for keeping America healthy and for stopping these devastating cuts.”
Matt VanHyfte, a spokesperson for the Republican committee leadership, said HHS officials would meet with bipartisan committee staff on April 11 to discuss the firings and other policy issues.
ASPE serves as a think tank for the HHS secretary, said Primus, who later was Rep. Nancy Pelosi’s senior health policy adviser for 18 years. In addition to the poverty guidelines, the office maps out how much Medicaid money goes to each state and reviews all regulations developed by HHS agencies.
“These HHS staffing cuts — 20,000 — obviously they are completely nuts,” Primus said. “These were not decisions made by Kennedy or staff at HHS. They are being made at the White House. There’s no rhyme or reasons to what they’re doing.”
HHS leaders may be unaware of their legal duty to issue the poverty guidelines, Ghertner said. If each state and federal government agency instead sets guidelines on its own, it could create inequities and lead to lawsuits, he said.
And sticking with the 2025 standard next year could put benefits for hundreds of thousands of Americans at risk, Ghertner said. The current poverty level is $15,650 for a single person and $32,150 for a family of four.
“If you make $30,000 and have three kids, say, and next year you make $31,000 but prices have gone up 7%, suddenly your $31,000 doesn’t buy you the same,” he said, “but if the guidelines haven’t increased, you might be no longer eligible for Medicaid.”
The 2025 poverty level for a family of five is $37,650.
As of October, about 79 million people were enrolled in Medicaid or the related Children’s Health Insurance Program, both of which are means-tested and thus depend on the poverty guidelines to determine eligibility.
Eligibility for premium subsidies for insurance plans sold in Affordable Care Act marketplaces is also tied to the official poverty level.
One in eight Americans rely on the Supplemental Nutrition Assistance Program, or food stamps, and 40% of newborns and their mothers receive food through the Women, Infants, and Children program, both of which also use the federal poverty level to determine eligibility.
Former employees in the office said they were not disloyal to the president. They knew their jobs required them to follow the administration’s objectives. “We were trying to support the MAHA agenda,” the social scientist said, referring to Kennedy’s “Make America Healthy Again” rubric. “Even if it didn’t align with our personal worldviews, we wanted to be useful.”
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Under President Joe Biden, enrollment in Medicaid hit a record high and the uninsured rate reached a record low.
Donald Trump’s return to the White House — along with a GOP-controlled Senate and House of Representatives — is expected to change that.
Republicans in Washington say they plan to use funding cuts and regulatory changes to dramatically shrink Medicaid, the nearly $900-billion-a-year government health insurance program that, along with the related Children’s Health Insurance Program, serves about 79 million mostly low-income or disabled Americans.
The proposals include rolling back the Affordable Care Act’s expansion of Medicaid, which over the last 11 years added about 20 million low-income adults to its rolls. Trump has said he wants to drastically cut government spending, which may be necessary for Republicans to extend 2017 tax cuts that expire at the end of this year.
Trump made little mention of Medicaid during the 2024 campaign. The first Trump administration approved work requirements in several states, though only Arkansas implemented theirs before a federal judge said it violated the law. The first Trump administration also sought to block grant funding to states.
House Budget Committee Chair Jodey Arrington (R-Texas) told KFF Health News that Medicaid and other federal entitlement programs need major changes to help cut the federal debt. “Without them, we will watch this country sadly enter into fiscal collapse.”
Rep. Chip Roy (R-Texas), a member of the Budget Committee, said Congress needs to explore cutting federal spending on Medicaid.
“You need wholesale reform on the health care front, which can include undoing a lot of the damage being done by the ACA and Obamacare,” Roy said. “Frankly, we could end up providing better service if we do it the right way.”
Advocates for poor people fear GOP funding cuts will leave more Americans without insurance, making it harder for them to get care.
“Medicaid is an obvious target for huge cuts,” said Joan Alker, executive director of Georgetown University’s Center for Children and Families. “An existential fight about Medicaid’s future likely lies ahead.”
Medicaid, which turns 60 in July, is nearing the end of a disruptive period, after covid pandemic-era coverage protections expired in 2023 and all enrollees had to prove they still qualified. More than 25 million people lost coverage over the 18 months after the “unwinding” began, though it has not notably increased the number of people without insurance, according to the latest census data.
The unwinding’s disruptions could pale in comparison to what happens in the next four years, said Matt Salo, former executive director and founder of the National Association of Medicaid Directors. “What we are going to see is an even bigger seismic shift in who Medicaid covers and how it operates,” he said.
But Salo said any efforts to shrink the program will face pushback.
“A lot of powerful entities — state governments, managed-care organizations, long-term care providers, and everyone under the sun who wants to do well by doing good — wants to see Medicaid work efficiently and be adequately funded,” he said. “And they will be highly motivated to push back on something they see as draconian cuts, because it could affect their business model.”
The GOP is looking at several tactics to reduce the size of Medicaid:
- Shifting to block grants. Switching to annual block grants could lower federal funding for states to operate the program while giving states more discretion over how to spend the money. Currently, the government matches a certain percentage of state spending each year with no cap. Republican presidents since Ronald Reagan have sought to block-grant Medicaid with no success. Arrington said he favors ending the open-ended federal funding to states and replacing it with a set annual amount based on how many people each state has in the program.
- Cutting ACA Medicaid funding. The ACA provided financing to cover, through Medicaid, Americans with incomes up to 138% of the federal poverty level, or $20,783 for an individual last year. The federal government pays 90% of the cost for adults covered through the law’s Medicaid expansion, which 40 states and Washington, D.C., have adopted. The GOP may try to lower that funding to the same match rate the feds pay states for everyone else in the program, which averages about 60%. “We should absolutely note that we are subsidizing the healthy, able-bodied Medicaid expansion population at a higher rate than we do the poorest and sickest among us, which was the original intent of the program,” Arrington said. “That’s not right.”
- Lowering federal matching funds. Since Medicaid began, the federal match rate has been based on the relative wealth of a state’s population, with poorer states receiving a higher rate and no state receiving less than a 50% match. Ten states get the base rate — all but two are Democratic-run states, including New York and California. The GOP may seek to cut the base rate to 40% or less.
- Adding work requirements. During the first Trump term, federal courts ruled that Medicaid law doesn’t allow coverage to be conditioned on enrollees’ working or seeking jobs. But the GOP may try again. “If we can get strict work requirements on able-bodied adults, that can be a huge cost savings by itself,” Rep. Tom McClintock (R-Calif.) told KFF Health News. Because most Medicaid enrollees already work, go to school, or serve as caregivers, critics say such a requirement would simply add red tape to obtaining coverage, with little impact on employment.
- Placing enrollment hurdles. About 10 states offer some populations what’s called continuous eligibility, whereby people stay enrolled for years without having to renew their coverage. That policy’s been shown to prevent enrollees from falling out of the program for short periods because of hardships or paperwork problems, which can lead to surprise medical bills and debt. The Trump administration could seek to repeal waivers that allow states to grant multiyear continuous eligibility, which would require people in those states to reapply for coverage annually.
If the GOP’s plans to shrink Medicaid are realized, Democrats and health experts say, low-income people forced to buy private insurance would face challenges paying monthly premiums and the large copayments and deductibles common to commercial plans that typically don’t exist in Medicaid.
The Paragon Health Institute, a leading conservative think tank run by former Trump adviser Brian Blase, has issued reports saying the billions in extra money states took to expand Medicaid under the ACA has been a boon to private insurers that manage the program and relatively wealthier people it says shouldn’t be enrolled.
Josh Archambault, a senior fellow with the conservative Cicero Institute, said he hopes the Trump administration holds states accountable for overpaying providers and enrolling people in Medicaid who are not eligible. Conservatives have cited CMS reports saying states improperly pay Medicaid providers billions of dollars a year, though the federal government notes that is mostly due to lack of documentation.
He said the GOP will look to scale back Medicaid to its “traditional” populations of children, pregnant women, and people with disabilities. “We need to rebalance the program that most people think is underperforming,” he said. Most Americans, including large majorities of both Republicans and Democrats, view the program favorably, according to polls.
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