But there’s a catch: If people want to move to original Medicare and buy a supplemental Medigap insurance plan to cover some out-of-pocket costs, they may not be able to. Medigap insurers can generally refuse coverage to applicants whose medical history or current health problems might make them expensive to cover, a process called medical underwriting.

“We really want people to factor that in,” said Kata Kertesz, managing policy attorney at the Center for Medicare Advocacy. “If someone is in a Medicare Advantage plan for several years and then wants to switch to original Medicare, they may find they can’t switch and also get a Medigap plan.”

There are many reasons people might want to trade their MA plan for traditional Medicare. Although MA managed-care plans are typically cheaper and offer benefits not available in original Medicare, such as coverage for vision and hearing services, they have smaller provider networks than the original program and, sometimes, extensive prior authorization requirements.

In addition, as Medicare Advantage plan profits have sagged in recent years, a growing number of plans are pulling out of areas they used to serve, leaving members with fewer options. This year, an estimated 1 in 10 MA plan members will be forced out of their plans for this reason, according to a study published in JAMA in February.

“We saw some Medicare Advantage plans that just left the market completely and stopped issuing plans,” said Emily Whicheloe, education director at the Medicare Rights Center.

For those considering a switch to original Medicare, getting a Medigap plan can be tricky. Federal law provides a one-time, six-month opportunity for people 65 or older and newly covered by Medicare Part B to sign up for any Medigap plan without underwriting. After that initial sign-up period ends, however, there are fewer coverage guarantees.

But some do exist. Here are a few key circumstances and time frames when people are guaranteed a Medigap plan without having to undergo underwriting:

• People who live in Connecticut, Massachusetts, or New York can sign up for a Medigap policy anytime during the year without underwriting. In Maine, there is a one-month window each year when Medigap insurers must offer Plan A to all comers without underwriting. (Plan A provides less comprehensive coverage than some of the other standardized plan types.)
• People who sign up for a Medicare Advantage plan when they are first eligible for Medicare Part A at age 65 can switch to original Medicare within the first year and buy a Medigap plan too. This is sometimes called the “trial right.”
• If a Medicare Advantage plan leaves Medicare or stops providing services in an area, affected enrollees can switch to original Medicare and buy a Medigap plan either 60 days before or up to 63 days after their MA coverage ends. During this special enrollment period, they can’t be turned down or charged more based on their health.
• If an individual moves out of the service area and no longer has access to their Medicare Advantage plan providers, they can switch to original Medicare and apply for a Medigap policy either 60 days before or up to 63 days after their MA coverage ends. That typically happens when someone notifies the plan of their permanent move or the plan discovers it, said Bonnie Burns, a training, policy, and technical assistance consultant at California Health Advocates who specializes in Medicare and Medigap coverage.

There are other circumstances when someone might qualify for a special enrollment period under federal rules, and states may have additional qualifying events that are more generous than federal standards.

Patient advocates emphasize that it’s often useful to work with a counselor at the State Health Insurance Assistance Program, or SHIP, for free, unbiased help figuring out Medigap coverage options. SHIP counselors can help applicants identify potential avenues to qualify for Medigap coverage without underwriting at both the federal and state levels.

People who don’t qualify for a guaranteed right to a Medigap plan without underwriting may still be approved for coverage. Premiums may be higher, however, and plans may impose a waiting period of up to six months for coverage of preexisting medical conditions in certain circumstances.

Beware: More Underwriting

In recent years, some Medigap insurers have spent a growing percentage of premiums on medical claims, putting pressure on profits, Burns said. “Medigap insurers’ underwriting has tightened up considerably recently,” she said.

The list of health conditions that Medigap insurers might deny coverage for is long, including Alzheimer’s disease, asthma, cancer, congestive heart disease, diabetes with complications, end-stage renal disease, high blood pressure, and stroke, among others, according to a review by KFF of leading insurers’ applications.

When people apply for a Medigap plan that will be medically underwritten, they will typically be asked to fill out a health questionnaire, said Nick Ortner, a principal and consulting actuary at Milliman who is a Society of Actuaries fellow. Increasingly, insurers are requesting that people agree to a prescription drug background check, Ortner said.

“Oftentimes, that prescription drug history may be the primary driver of a decision as it relates to underwriting,” he said, rather than a physical exam or medical records review.

Insurers don’t all have the same underwriting rules, however. Here again, a SHIP counselor may be useful for pointing people to specific companies that accept applicants with a particular medical diagnosis, or have different waiting periods or coverage exclusions.

“They have access to a Medigap comparison tool in addition to what is existing on medicare.gov that can give you a very good estimate of what you may pay for those Medigap plans,” said Ryan Ramsey, associate director of health coverage and benefits at the National Council on Aging.

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Yet about 82% of the comments are identical to a letter that appeared on the website of a secretive advocacy group called Medicare Advantage Majority, a data analysis by KFF Health News has found. 

The “dark money” group does not reveal its funders or much else — other than to say it is “dedicated to protecting and strengthening Medicare Advantage” and is “powered by hundreds of thousands of local advocates nationwide.” 

“Our campaign provides information and offers tools for concerned Americans to use to reach decision makers,” spokesperson Darren Grubb said in an email. The group has spent more than $3.1 million on hundreds of Facebook ads since September 2024, according to Facebook’s Ad Library, a database of the social media company’s online ads. 

There’s no doubt health insurers are unhappy with a January proposal from the Centers for Medicare & Medicaid Services, or CMS, to keep Medicare Advantage reimbursement rates essentially flat in 2027 — far less than they expected from the Trump administration. 

Medicare Advantage plans offer seniors a private alternative to original Medicare. The insurance plans enroll about 35 million members, more than half the people eligible for Medicare. 

CMS is set to announce a final rate decision by early next month. The agency solicited public comments on the proposal from Jan. 26 through Feb. 25 to give interested parties and the public a chance to air their views. As of March 12, CMS said it had received 46,884 comments but had posted only 16,422 online. 

Medicare Advantage Majority, which says the rate proposal amounts to a “cut” in services and warns of dire consequences for seniors should it go through, accounted for at least 13,522 of the 16,422 published comments as of March 12. 

Critics warn that these sorts of campaigns may create a misleading impression of grassroots support, especially when it’s not clear who is financing them. 

“It puts a different spin on a massive groundswell of comments to know all are being driven by one specific organization,” said Michael Beckel, director of money in politics reform for Issue One, a group that seeks to limit the influence of money on government policy and legislation.

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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Yet about 82% of the comments are identical to a letter that appeared on the website of a secretive advocacy group called Medicare Advantage Majority, a data analysis by KFF Health News has found.

The “dark money” group does not reveal its funders or much else — other than to say it is “dedicated to protecting and strengthening Medicare Advantage” and is “powered by hundreds of thousands of local advocates nationwide.”

“Our campaign provides information and offers tools for concerned Americans to use to reach decision makers,” spokesperson Darren Grubb said in an email. The group has spent more than $3.1 million on hundreds of Facebook ads since September 2024, according to Facebook’s Ad Library, a database of the social media company’s online ads.

There’s no doubt health insurers are unhappy with a January proposal from the Centers for Medicare & Medicaid Services, or CMS, to keep Medicare Advantage reimbursement rates essentially flat in 2027 — far less than they expected from the Trump administration.

Medicare Advantage plans differ from traditional Medicare because private insurance companies administer them. The insurance plans enroll about 35 million members, more than half the people eligible for Medicare. The plans offer things like vision and drug coverage, but Medicare Advantage insurers restrict the hospitals and doctors that patients can use and require prior approval for various procedures.

CMS is set to announce a final decision by early next month on the rate proposal. The agency solicited public comments on the proposal from Jan. 26 through Feb. 25 to give interested parties and the public a chance to air their views.

Medicare Advantage Majority, which says the rate proposal amounts to a “cut” in services and warns of dire consequences for seniors should it go through, accounted for at least 13,522 of the 16,422 comments published as of March 12.

The proposed rate plan “puts my access to care at risk,” the group’s template letter to policymakers reads in part. “If the investment made by Washington in the Medicare Advantage program is nearly flat year-over-year, I could lose benefits I rely on every day, including affordable prescriptions, capped out of pocket costs, and access to trusted doctors and specialists.”

“Medicare Advantage is not optional for me. The cost protections alone have saved me thousands of dollars and made my health care manageable. Without this program, I would face higher costs, fewer providers, and fewer benefits at a time when I can least afford it,” the letter states.

Critics warn that these sorts of campaigns may create a misleading impression of grassroots support, especially when it’s not clear who is financing them.

“It puts a different spin on a massive groundswell of comments to know all are being driven by one specific organization,” said Michael Beckel, director of money in politics reform for Issue One, a group that seeks to limit the influence of money on government policy and legislation.

“There’s no way for the public to know what wealthy donors or special interests are funding dark money groups like this,” he said. “That means there’s no scrutiny of who’s really calling the shots.”

Some health care policy experts, who have long argued that the government overpays Medicare Advantage plans by tens of billions of dollars every year, believe industry groups or their surrogates routinely overstate possible negative impacts of rate decisions they don’t like.

“The plans always say that the sky is falling,” said Matthew Fiedler, a health care policy expert with the Brookings Institution. “The industry has a lot of money at stake here. They try to exert pressure on policymakers any way they can.”

At the same time, even critics concede that some of the millions of people enrolled in Medicare Advantage plans could face service cuts if insurance companies are not satisfied with government payments.

“It is legitimate for people to be worried,” said Julie Carter, counsel for federal policy at the Medicare Rights Center, a group that advocates for older adults and people with disabilities.

Her group argues that Medicare Advantage plans have never attained expected cost savings and instead have been overpaid for years at least partly due to “actions to maximize profits.” She said the health plans “are supposed to be saving money, not taking extra.”

People struggling to pay health care bills may have little use for the policy debate in Washington.

“If it wasn’t for being able to have this program, I really wouldn’t be able to afford any kind of medical services, to be honest,” said EsterAlicia Rose, 75, who works at the front desk of a hotel in Pagosa Springs, Colorado. She said she signed the Medicare Advantage Majority form letter to reach policymakers.

Kathy Lovely-Marshall, 66, a retired nurse who lives in Brookville, Ohio, did too. She said she receives “a lot of perks” from her plan, such as dental care, eyeglasses, and prescriptions.

“All those things are a big plus as far as I am concerned,” she said. “I’m very happy with the plan I have.”

But Corenia Branham, 90, a widow and cancer survivor who lives in Alum Creek, West Virginia, said she wants nothing to do with Medicare Advantage plans run by private health insurance companies. She said she didn’t turn in any of the four form letters under her name, which were posted online by CMS on Feb. 23 and signed, “Miss Corenia Branham Branham.” It’s not clear why her last name is signed twice.

Branham said she’s not on Medicare Advantage and doubts she could count on it for needed care.

“I wouldn’t recommend it to nobody,” she said. “I sure don’t want anything to do with it.”

Grubb, the Medicare Advantage Majority spokesperson, disputed that account. He said Branham responded to an ad on Facebook. On Feb. 6, she “completed the form with her information and chose to send her comment to CMS as well as to her representatives in Congress and the White House,” he said.

Other Medicare Advantage advocacy groups have stepped up ad campaigns as the rate decision looms.

The Better Medicare Alliance, whose “allies” include a range of health insurers, health care providers, and consumers, is urging seniors to “Tell Washington to Stand Up for Medicare Advantage.”

“We’ve mobilized beneficiaries to write letters and make phone calls, and we’ve run digital ads on streaming platforms,” spokesperson Susan Reilly said.

Reilly said that this year roughly 3 million seniors “were forced to find new coverage” because plans either shuttered operations or left some areas.

She also said Medicare Advantage plans have “scaled back” benefits such as offering transportation to medical appointments, nutrition support, and dental and vision coverage, while over the past two years beneficiaries have faced an average $900 increase in out-of-pocket maximums.

“We do view this as especially serious,” Reilly said. “This isn’t a single bad year; it’s the cumulative effect of years of underfunding and policy disruption from the previous administration that has left the program increasingly vulnerable.”

As of March 12, CMS said it had received 46,884 comments but had posted only 16,422 online.

CMS spokesperson Catherine Howden said the agency would make more comments public “as soon as practicable.”

“The agency focuses on reviewing the substance of timely submissions and does not speculate on volume, sentiment, or potential impact of comments while the comment period is open/under review,” she said in a statement.

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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Julie Rovner
KFF Health News

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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

It’s been a tough week for Health and Human Services Secretary Robert F. Kennedy Jr. In addition to Kennedy having surgery to repair a torn rotator cuff, personnel issues continue to plague the department: The nominee to become surgeon general, an ally of Kennedy’s, may lack the votes for Senate confirmation. The controversial head of the Food and Drug Administration’s vaccine center will be resigning next month. And a new survey finds Americans have less trust in HHS leaders now than they did during the pandemic.

Meanwhile, the Trump administration continues its crackdown over claims of rampant health care fraud. In addition to targeting the Medicaid programs in states led by Democratic governors, the Centers for Medicare & Medicaid Services is also taking aim at previously sacrosanct Medicare Advantage plans.

This week’s panelists are Julie Rovner of KFF Health News, Anna Edney of Bloomberg News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine, and Shefali Luthra of The 19th.

Panelists

Anna Edney
Bloomberg News

@annaedney

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Read Anna’s stories.

Joanne Kenen
Johns Hopkins University and Politico

@JoanneKenen

@joannekenen.bsky.social

Read Joanne’s bio.

Shefali Luthra
The 19th

@shefali.bsky.social

Read Shefali’s stories.

Among the takeaways from this week’s episode:

• Americans feel more confident in career scientists at federal health agencies than in the agencies’ leaders, according to a new survey from the Annenberg Public Policy Center at the University of Pennsylvania. Yet the survey also sheds more light on the erosion of trust in public health officials and scientific research.
• The FDA’s vaccine chief, Vinay Prasad, is leaving — again. Prasad was a critic of the agency before he joined it, and his tenure has been shaped by the same attitude, affecting career officials’ morale and the agency’s interactions with outside companies.
• The Trump administration has extended its fraud crackdown campaign into Medicare Advantage plans. The privately run alternative to traditional Medicare coverage has been a GOP darling from the get-go. Yet President Donald Trump is nudging the party away from its pro-business stance on private insurance, arguing the government should give money to patients rather than insurers — a justification for policies undermining the Affordable Care Act.
• And Wyoming became the latest state to enact a six-week abortion ban, a move that’s being challenged in court. The development points to the fact that while federal policymaking on abortion has largely stalled, the issue is still very much in play in the states as abortion opponents keep pushing back on access to the procedure.

Also this week, Rovner interviews Andy Schneider of Georgetown University about the Trump administration’s crackdown on what it alleges is rampant Medicaid fraud in Democratic-led states.

Plus, for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: The Marshall Project’s “The Harrowing Journey Home for Families Leaving Immigration Detention,” by Shannon Heffernan, Jesse Bogan, and Anna Flagg.

Anna Edney: The Wall Street Journal’s “The Boom in Autism Therapy Is Medicaid’s Fastest-Growing Jackpot,” by Christopher Weaver, Tom McGinty, and Anna Wilde Mathews.

Shefali Luthra: The New York Times’ “States Move To Limit Access to H.I.V. Treatment,” by Apoorva Mandavilli.

Joanne Kenen: The Idaho Capital Sun’s “988 Ended His Call. Now an Idaho Teen Is Pushing for a Fix to State’s Parental Consent Law,” by Laura Guido.

Also mentioned in this week’s podcast:

• The Annenberg Public Policy Center’s “Stark Divide: Americans More Confident in Career Scientists at U.S. Health Agencies Than Leaders.”
• KFF Health News’ “Six Federal Scientists Run Out by Trump Talk About the Work Left Undone,” by Rachana Pradhan and Katheryn Houghton.
• Bloomberg Law’s “Trump Administration Funding Delays Worry NIH Grant Recipients,” by Sandhya Raman.
• The 19th’s “Abortion Bans Reshaped Reproductive Health, and Now the Rental Market,” by Shefali Luthra.
• The Georgetown University McCourt School of Public Policy Center for Children and Families’ “CMS Weaponizes Fraud Against Medicaid in Minnesota: Part 2,” by Andy Schneider.

Clarification: This page was updated at 5:10 p.m. ET on March 12, 2026, to clarify that Vinay Prasad, the FDA’s vaccine chief, will be leaving his job in April. In an email after publication, William Maloney, an HHS spokesperson, said Prasad is “leaving of his own accord.”

click to open the transcript

Transcript: RFK Jr.’s Very Bad Week

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.] 

Julie Rovner: Hello from KFF Health News and WAMU public radio in Washington, D.C. Welcome to What the Health? I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest reporters covering Washington. We are taping this week on Thursday, March 12, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So, here we go. 

Today we are joined via videoconference by Shefali Luthra of the 19th. 

Shefali Luthra: Hello. 

Rovner: Anna Edney of Bloomberg News. 

Anna Edney: Hi, everybody. 

Rovner: And Joanne Kenen at the Johns Hopkins Bloomberg School of Public Health and Politico Magazine. 

Joanne Kenen: Hi, everybody. 

Rovner: Later in this episode, we’ll have my interview with Andy Schneider of Georgetown University, who will try to explain how the federal government’s fraud crackdown on blue-state Medicaid programs is something completely different from any fraud-fighting effort we’ve seen before. But first, this week’s news — and some of last week’s. 

Let’s start at the Department of Health and Human Services, where I think it’s safe to say Secretary Robert F Kennedy Jr. is not having a great week. The secretary reportedly had to have his rotator cuff surgically repaired on Tuesday. It’s not clear if he injured it during one of his famous video workouts. But it is clear, at least according to a new survey from the University of Pennsylvania’s Annenberg Center, that the American public is not buying what he’s selling when it comes to policy. According to the survey, public trust in HHS agencies, which already took a dive during the pandemic, has fallen even more since Kennedy took over the department. Although, interestingly, public trust in career HHS officials is higher than it is for their political leaders. And trust in outside professional health organizations, places like the American Heart Association and the American Academy of Pediatrics, is higher than for any of the government entities. 

Perhaps related to that is another piece of HHS news from this week. The FDA [Food and Drug Administration] approved a label change for the drug leucovorin, which Secretary Kennedy last fall very aggressively touted as a potential treatment for autism. But the drug wasn’t approved to treat autism. Rather, the label changes to treat a rare genetic condition. Kennedy bragged about leucovorin, by the way, at the same press conference that President [Donald] Trump urged pregnant women not to take Tylenol, which has not been shown to contribute to the rise in autism. Maybe it’s fair to say the public is paying attention to the news and that helps explain the results of this Annenberg Center survey? 

Luthra: Maybe. I was just thinking, we do know that Tylenol prescriptions for people who are pregnant did go down, right? There’s research that shows, after that press conference, behaviors did change. And so to your point, it’s clear there is a lot of confusion, and confusion maybe breeds mistrust. But I don’t know that we can necessarily say that American voters and the public at large are very obviously informed as much as they are perhaps disenchanted by things that seem as if they were told would restore trust and make things clearer and in fact have not done so. 

Rovner: That’s a fair assessment. Anna. 

Edney: Yeah, I think there’s a lot of overpromising and underdelivering, and that can kind of create this issue where this administration — and RFK Jr. has been doing this as well — kind of is making these decisions from the top, rather than having these normal conversations with the career scientists and things like that, where the public can kind of follow along on why the scientific decisions are being made if they so choose to, or at least have an idea that there was a discussion out there. And that’s not happening. So that’s not something that’s creating a lot of trust. I think people are seeing that as unscientific and chaotic. 

Rovner: I was particularly interested in one of the findings in the survey, is that Dr. Fauci, Dr. Tony Fauci, who was sort of the bête noire of the pandemic, has a higher approval rating than either RFK Jr. or some of his top deputies. Joanne, I see you nodding. 

Kenen: Yeah that was so stri— I mean, it’s still not high. It was, I believe it was — I’m looking for my note — but I think was 54%, which is not great. But it was better than Dr. [Mehmet] Oz [head of the Centers for Medicare & Medicaid Services]. It was better than Kennedy. It was better than a bunch of people. So, but it also shows that half the country still doesn’t trust him. It was a really interesting survey, but the gaps in trust in credible science are still significant. What was interesting is the declining trust in our government officials in health care, but there’s still, nationally, the U.S. population, there’s still a lot of skepticism of science and public health. Maybe not as bad as it was, but still pretty bad. 

Luthra: And Julie, you alluded to these famous push-up and workout videos. And part of what you’re getting at — right? — is that the communications that we see are targeted toward a not necessarily very large audience. It is these people who are hyper-online, in particular internet spaces and communities, and that’s somewhat divorced from most people and how they live their lives. And when you focus your message and you’re campaigning on this very particular slice, it’s just a lot easier to lose sight of where people are and what they want from their government and what they will actually appreciate. 

Rovner: It’s true. The online America is very separate from the rest of America, which is a whole lot bigger. Well— 

Kenen: And there’s also the young people who probably aren’t in these surveys who, teenagers, who are getting a lot of information on TikTok about supplements and raw milk. And the young men and the teenage boys and the supplements is a big deal, and that’s online. And also we have been seeing for a while, but I think it’s probably creeping up, the recommendations about psychedelics. So there’s all this stuff out there that isn’t going to be picked up by that poll. But yes, it was an interesting poll. 

Rovner: All right. Well, meanwhile over at the Food and Drug Administration, in-again out-again in-again vaccine chief Vinay Prasad is apparently out again, or will be as of later this spring. I feel like Prasad’s very rocky tenure has been kind of a microcosm for the difficulties this administration has had working with career scientists at FDA and elsewhere, at HHS. Anna, what made him so controversial? 

Edney: Well, I think, Prasad was an FDA critic before he came to the agency. And so essentially, when he was out in public, particularly during covid, but there were even criticisms he had before that. He was criticizing these career scientists at the agency. And so he got there, and the way he appeared to operate was that he knew best and he didn’t need to talk to any of these people that had been there, some for decades, and that was getting him in a lot of trouble. But he was being defended and protected by FDA Commissioner Martin Makary, and he really supported Prasad, and he called him a genius and wanted him to stay on. So the first time Prasad left, he convinced him to come back. And now this time, I think, things maybe just went a bridge too far when there was sort of this behind-the-scenes but very public fight with a company trying to make a rare-disease drug. And this is something that, particularly, several senators really, really hate, is when the FDA is getting in the way of a rare-disease drug getting to market, because they don’t think that that’s something the agency should be trying to do unless the drug is maybe wholly unsafe. But they think anyone should be able to try it. And so when this exploded and FDA officials were and HHS officials were behind the scenes, but very publicly, calling this company a liar, it was just a bridge too far. 

Rovner: Well, and he, this was, this incredibly unusual phone call with reporters in which he tried to not be quoted by name, but kind of hard when the head of the agency, or the head of the center at FDA is basically trashing a company, trying to do it on background. Was that kind of the last straw? 

Edney: Yeah, I think so. And sort of an aside on that. I’m curious how that phone call even was allowed to be set up and called. Because, it’s not like he did it on his own. There were, there was an infrastructure around him that helped him set that up. So I’m curious about why that even went down, but I think that was definitely what pushed him out the door. You know, this company wanted to get this drug approved. The FDA had said, No, not unless you do this extremely difficult trial, which the company said would require drilling holes in people’s heads, for what they were trying to get approved, and that it would be a placebo, essentially, for some of those patients, even when you get a hole drilled in your head, and this could be a 10-hour sham surgery, is what the company said. And then Prasad comes out and says: No, they’re lying. That definitely could be a half-hour. No big deal. And I just think that there were senators frustrated with this, the White House not wanting to see another thing blow up over rare-disease drugs, because that has, there have been a lot of issues at FDA under his tenure, of just drugs not being able to get to market. Or having issues with vaccines that have been years in development not being able to get even reviewed, and then that being reversed. So it was just, that was kind of the last straw. 

Rovner: And of course President Trump himself has been a big proponent of this whole Right to Try effort, that it should be easier for people with, particularly with terminal diseases to be able to try drugs that may or may not help. Joanne, you want to add something. 

Kenen: Also wasn’t he still, Prasad, still living in California and running up really huge travel bills and— 

Rovner: Yes. 

Kenen: —not being at the FDA very much, at a time when everybody else has been forced to come back to work? So, but I do confess that I keep looking at my phone to check if he’s still out or is he already back again. 

Rovner: Right. 

Kenen: I’m really not totally convinced that this is the end of Prasad, but yeah. 

Rovner: Yeah, I was not kidding when I said on-again off-again on-again off-again. All right. Well, moving over to the National Institutes of Health, which also has a director that’s doing more than one job in more than one place. I know there’s so much news that it’s hard to keep track of it all, but I do think it’s important to continue to follow things that look to be settled, like funding for the NIH, which Congress actually increased in the spending bill that passed at the end of January. To that end, a shout-out to our podcast panelist Sandhya Raman, formerly of CQ, now at Bloomberg, for reporting that grant funding that still pays for most of the nation’s basic biomedical research is still being held up. This is months after it was ordered resumed by courts and appropriated by Congress. 

Shout-out as well to my KFF Health News colleagues Rachana Pradhan and Katheryn Houghton for their project on the people and research projects that have been disrupted by all the cuts at NIH, as well as new bureaucratic hurdles put in place. I feel like if there weren’t so much else going on, what’s happening at basically the economic and health engine of NIH would be getting much, much, much more attention, particularly because of the continuing brain drain with researchers moving to other countries and students choosing different careers rather than becoming researchers. I wonder if this sort of drip, drip, drip at NIH is going to turn into a very long-term hole that’s going to be very difficult to fill. A lot of these things have years- if not decades-long runways. These great scientific achievements start somewhere, and it looks like they’re just sort of pulling out the whole starting part. 

Kenen: It’s already affecting the pipeline. In graduate schools, many schools fund their PhD candidates, and it’s NIH money, or partly NIH money. It’s different — I’m not an expert in every single school’s support systems for PhD candidates, but I do know that the pipeline has been shrunken in some fields at some schools, and that’s been reported on widely. And there’s been a lot of coverage about years and years of research. You can’t just restart a multiyear, complicated clinical trial or research project. Once you stop it, you’re losing everything to date, right? You can’t just sort of say, Oh, I’ll put it on hold for a couple of years and resume it. You can’t do that. So we’ve already reached some kind of a critical point. It’s just a matter of how much worse it gets, or whether the ship begins to stabilize in any way going forward. But there’s already damage. 

Rovner: I say, are you guys as surprised as I am, though, that this isn’t — the NIH has been this sort of bipartisan jewel that everybody has supported over the decades that I’ve been covering it, and now it’s basically being dismantled in front of our eyes, and nobody’s saying very much about it. 

Kenen: It’s also an engine of economic growth. You see different ROI [return on investment] numbers when you look at NIH, but I think the lowest number you hear is two and a half dollars of benefit for every dollar we invest. And I’ve seen reports up to $7. I don’t know what the magic number is, but this is an engine of economic growth in the United States. This is basic biomedical research that the private sector or the academic sector cannot do. It has to come from the government. And I don’t think any of us have really gotten our heads around — why harm the NIH when it is bipartisan, it is economically successful, and it has humanitarian value. It’s the basis. The drug companies develop the drug and bring it to the market. But that basic, basic, earlier what’s called bench science, that’s funded by the NIH. 

Rovner: I know. It’s a mystery. Well, adding to RFK Jr.’s bad week are the growing divisions within his base, the Make America Healthy Again movement. While the White House, seeing that the public doesn’t really support MAHA’s anti-vaccine positions, is trying to get HHS to tone it down, there was a major MAHA meetup just blocks from the White House this week, with sessions urging a complete end to the childhood vaccine schedule and the removal of all vaccines from the market, quote, until they can be proven “safe and effective.” By the way, most of them have been already. Meanwhile, lots of MAHA followers are still angry that the White House is supporting the continuing production of glyphosate, the weed killer sold commercially as Roundup. Democrats, according to Politico, are trying to exploit the divisions in the MAHA movement, which leads to the question: Will MAHA be a net plus or a net minus for this fall’s midterm elections? On the one hand, I think Trump appointed Kennedy because he was hoping that the MAHA movement would be a boost to turnout. On the other hand, MAHA seems pretty split right now. 

Edney: Well, I think that’s the million-dollar question, is which way they’re going to swing if they swing at all. And it’s hard to say right now, because I think they are angry at certain aspects of things this administration is doing, the two things you mentioned, on Roundup and on vaccines, kind of telling RFK to kind of talk a little bit less about those. But will they be able to then vote for Democrats instead? I think, it’s only March, so it’s so difficult to say what will happen between now and then. I think there’s still things that the health secretary could do on food that he’s talked about, that could draw attention away from that anger, that might make many of them happy. I think there were some things he kind of started doing early in his term that hasn’t been talked about as much. And also, I think there’s still the prospect of Casey Means becoming surgeon general — or not — out there, and that’s kind of a big piece of this. If she is to get into the administration, and that is sort of up in the air right now, then that could kind of give them something else to focus on, because she is a large part of this playbook of the MAHA movement. 

Rovner: That’s right. And we are waiting to see sort of if she can get the votes even to get out of committee, much less get to the floor, see whether we’re going to have, as some are saying, the first surgeon general who does not have an active license to practice medicine. Shefali, you wanted to add something. 

Luthra: No, I just think we’ve talked about this before on the podcast, that the food stuff is much more popular than the vaccine stuff. The vaccine components of MAHA remain very unpopular. It’s difficult to really see or say sort of what the White House can do on food in a sustained, focused way, without going off-script, that is also popular. But I think to Anna’s point, it’s just so hard to say to what extent this ultimately matters in November, because there are just so many concerns right now. People can’t afford their health insurance, and gas prices are going up. And I just think we have to wait and see to what extent people are voting based on food policy. 

Rovner: Yeah, well, we will see. All right, we’re going to take a quick break. We will be right back. 

OK, turning to another Trump administration priority, fighting fraud. This week, the administration accused another Democratic-led state, New York, of not policing Medicaid fraud forcefully enough. This comes after the Centers for Medicare & Medicaid Services said it will withhold hundreds of millions of dollars from Minnesota, which our guest, Andy Schneider, will talk about at more length. Minnesota, by the way, last week sued the federal government over its Medicaid efforts. So that fight will continue for a while. But it’s not just blue states, and it’s not just Medicaid. In something I didn’t have on my bingo card, this administration is also going after fraud in the Medicare Advantage program, which has long been a Republican darling. 

Last week, CMS banned the Medicare Advantage plan operated by Elevance Health, which has nearly 2 million Medicare patients currently enrolled, from adding any new enrollees starting March 31, for what the agency described as, quote, “substantial and persistent noncompliance with Medicare Advantage risk adjustment data.” And on Tuesday, the congressional Joint Economic Committee reported that overpayments to those Medicare Advantage plans raised premiums by an estimated $200 per Medicare enrollee annually — and that’s all Medicare enrollees, not just those in the private Medicare Advantage plans. Is this the end of the honeymoon for Medicare Advantage? Joanne, you were there with me when Republicans were pushing this. 

Kenen: I’ve been surprised, as you have, Julie, because basically Medicare Advantage has been the darling, and it is popular with people. It’s grown and grown and grown, not because the government forced people in. It has good marketing and some benefits for the younger, healthier post-65 population, gyms and things like that. But — and vision and dental, which are a big deal. But we’ve also seen a backlash, in some ways, because there’s the prior authorization issues in Medicare Advantage have gotten a lot of attention the last couple of years. But not just am I surprised by sort of the swing that we’re hearing about generally. I’m surprised by Dr. Oz, because when he ran for Senate a couple years ago in Pennsylvania, and much of his public persona has been really, really, really gung-ho, pro Medicare Advantage. 

And yet, some of you were at or, like me, watched the live stream of — he did a very interesting, thoughtful, and, I’ve mentioned this at least one time before, hourlong conversation with a lot of Q&A at the Aspen Institute here in D.C. a couple of months ago. And one of the questions was someone said: Dr. Oz, you’ve just turned 65. Are you doing Medicare Advantage, or are you doing traditional Medicare? And the expected answer for me was, well, I knew that he’s on government insurance now. So he, you have to, at 65 you have to go into Medicare Advanta— Medicare A, whether you — that’s automatic. That’s the hospital part. But you have the choice. But if you’re still working and getting insurance or government — he’s on a government plan. He doesn’t have to do that. But he actually, and he pointed that out, but the next sentence really surprised me, because he said: I don’t know. My wife and I are still talking about that. And I thought that was A) a very honest answer. He didn’t have to even say. But it was also, it just was interesting to me that after all that Rah-rah Medicare Advantage we were hearing about, his own personal choice was, Not sure if that one’s right for me. So — 

Rovner: I was going to say, I feel like the Republicans are sort of twisting right now between Medicare Advantage, which they’ve always pushed — they want to privatize Medicare because they don’t like government health insurance — and then there’s the current populist push against big insurance companies, because, of course, all those Medicare Advantage plans belong to those big insurance companies that Republicans are suddenly saying are too big and getting too much money. So they’re sort of caught between trying to have it both ways. I’ll be interested to see how they come down. One of the things that did strike me, though, even before Dr. Oz sort of started his little crusade against Medicare Advantage, was, I think it was at Kennedy’s confirmation hearing that Sen. Bill Cassidy was suddenly questioning Medicare Advantage. That was, I think, the first Republican I saw to like, Oh. That made me raise my eyebrows. And I think since then, I’ve kind of seen why. 

Kenen: The populist talk against insurance companies, not giving money to insurance companies, is part of the Republican — and, specifically, President Trump’s — desire to not extend the ACA, the Affordable Care Act, enhanced subsidies. That was the basic: Well, we’re not going to do this, because we’re just throwing money at these insurance companies. And we don’t want to do that. We want to empower the patients. That was the, I’m not, and the missing piece of that argument is: Yes, the ACA subsidies go to insurance companies. However, all of us are benefiting in some way or other from government policies that benefit insurance companies. The tax breaks our employers get. The tax breaks we get for our insurance. And then the biggie, of course, is Medicare Advantage. 

We are paying Medicare Advantage more than we are paying traditional Medicare. So Medicare Advantage is private insurance companies, and the government has been just sending them lots and lots of money for years. So I’m not sure it’s — this Medicare Advantage thing is just bubbling up, and we’re not really sure how this plays out. But I think that the rhetoric against insurance companies is the rhetoric against the ACA. 

Rovner: Oh, it is. 

Kenen: Rather that hasn’t yet been connected to the Medicare Advantage. I think they’re, yes, we all know they’re connected. But I think the political debate, it’s not Medicare Advantage is bad because insurance companies are bad. It’s the ACA is bad because it enriches insurance companies. There’s a different ideological parade going down the road. 

Rovner: I was going to say, it’s important to remember at the beginning of Medicare Advantage, which was a Republican proposal back in 2003, they purposely overpaid it. They gave it more money because they know that when they give them more money, the insurance companies are required to return some of that money to beneficiaries in the form of these extra benefits. That’s why there are gym memberships and dental and vision and hearing coverage in these Medicare Advantage plans. It does make them popular, so people sign up. And that was sort of Republicans’ intent at the beginning. It was to sort of not so much push people into it but entice people into it. 

Kenen: And then— 

Rovner: And then maybe cut it back later. 

Kenen: No, but it’s exceeded expectations. 

Rovner: Absolutely. 

Kenen: The number of people going into Medicare Advantage has been really high, higher than people expected. And it’s also hard to get out, depending on what state you live in. It’s not impossible, but it’s costly and difficult, except for a few, I think it’s seven or eight states make it pretty easy. But also remember that the earlier version of what we now call Medicare Advantage was — which was the ’90s, right Julie? — I think the Medicare Part C, and that failed. So — 

Rovner: Well after, that failed because they cut it when they were — 

Kenen: Right. Right. 

Rovner: They cut all the funding when they were balancing the budget — 

Kenen: Right.  

Rovner: — in 1997. 

Kenen: But that gave them the excu— right. 

Rovner: They made it fail. 

Kenen: That gave them an excuse to give them more money later that, when they revived it, renamed it, and launched it in 2003 legislation, that initial push to give them a ton of money, because they could say, Well, we didn’t give them enough money, and that’s why they fa—. There are all sorts of political things going on that weren’t strictly money. But yeah, it was part of the narrative of Why we have to give them more money, is They need it. 

Rovner: Yeah. Anyway, we’ll also watch that space. Well, finally, this week, there’s news on the reproductive health front, because there’s always news on the reproductive health front. Shefali, Wyoming has become the latest state to enact a so-called heartbeat ban, barring abortions when cardiac activity can be detected. That’s often around six weeks, which is before many people are even aware of being pregnant. I thought the Wyoming Supreme Court said just this past January that its constitution prevents abortion bans. So what’s up here? 

Luthra: They did, in fact, say that, and so we are seeing this law taken to court. It was actually added in a court filing to a preexisting case challenging other abortion restrictions in the state. I’m sure that’s going to play out for quite some time. But what’s interesting about the Wyoming Constitution — right? — is that it protects the right to make health care decisions, in an effort to sort of fight against the ACA. That was this conservative approach that now has come to really benefit abortion rights supporters as well. But what I think this underscores is that even as we are seeing fairly little abortion policy in Washington, at least in a meaningful way, a lot is still happening on the state level. That really is where the bulk of action is, whether you see that in Wyoming, in Missouri, where they’re trying to undo the abortion rights protections there, and just— 

Rovner: The ones that passed by voters. 

Luthra: Exactly. And so what we’re really thinking about is anti-abortion activists are not really that confident in the president’s desire, interest, ability, what have you, to get their agenda items done. And for now, they are really focusing on the states, and that is where their interest, I think, will only remain, at least until the primary for the next presidential race begins in earnest. 

Rovner: Well, Shefali, I also want to ask you about a story that you wrote this week on just how many things ripple out economically from abortion restrictions. Now it’s having an impact on rent prices? Please explain. 

Luthra: I thought this was so interesting. It was this NBER [National Bureau of Economic Research] paper that came out this week, and they looked at comparably trending rental markets in states with abortion bans and those without them. And what they saw was that after the Dobbs decision, rental prices declined relative to places without bans, compared to those in those that had them. And this is really interesting. It just sort of continues. Rental prices went down, and also vacancies went up. And what the researchers say is this is a very, very dramatic and clear relationship, and it illustrates that people, when they have a choice, are considering abortion rights in terms of where they want to live. And anecdotally, we know that, because we’ve seen residents make choices about where they will practice. We’ve seen doctors decide where they will live. We have seen people move. Companies offer relocation benefits if people want them. And this is more data that illustrates that actually that affects the economy of communities, and it really underscores that where we live just simply will look different based on things like abortion rights and abortion policy and other of these things that are treated as social but really do affect people’s economic behaviors. 

Rovner: And as we pointed out before, it’s not just about quote-unquote “abortion,” because when doctors choose not to live in a certain place, it’s other types of health care. It’s all health care. And we know that doctors tend to marry or partner with other doctors. So sometimes if an OB GYN doesn’t want to move to a certain place, then that OB-GYN’s partner, who may be some completely other type of doctor, isn’t going to move there either. So we are starting to see some of these geographical shifts going on. 

Luthra: And one point actually that the researcher made that I thought was so interesting was that abortion policy, it can be emblematic, in and of itself, a reason people choose not to live somewhere, but people may also be making these decisions because of what it represents. Do I look at an abortion policy and say, Oh, this reflects social values or gender beliefs? Or does it also suggest maybe more anti-LGBTQ+ laws? And all of that can create a picture that is broader than simply abortion or not, and determine where and how people want to live their lives. 

Rovner: It’s a really interesting story. We will link to it. All right, that is this week’s news. Now I’ll play my interview with Andy Schneider of Georgetown University, and then we will be back to do our extra credits. 

Rovner: I am pleased to welcome to the podcast Andy Schneider, a research professor of the practice at the Georgetown University McCourt School of Public Policy. And he spent many years on Capitol Hill helping write and shape Medicaid law as a top aide to California Democratic congressman Henry Waxman — and many hours explaining it to me. I have asked him here to help untangle the Medicaid fraud fight now taking place between the federal government and, at least so far, mostly Democratic-led states. Andy, thanks for being here. 

Andy Schneider: Thanks for having me, Julie. 

Rovner: So, it’s not like fraud in Medicaid — and other health programs, for that matter — is anything new. Who are the major perpetrators of health care fraud? It’s not usually the patients, is it? 

Schneider: No, it’s usually some bad-actor providers or bad-actor businesspeople. 

Rovner: So how are fraud-fighting efforts at both the federal and state level, since Medicaid funding is shared, supposed to work? How does the federal government and the state government sort of try and make fraud as minimal as possible? Since presumably they’re never going to get rid of it. 

Schneider: Unfortunately, I don’t think you’re ever going to get rid of it in Medicaid or Medicare or private insurance or in other walks of life. There are bad actors out there. They’re going to try to take advantage. So you need your defenses up. So the short of this is, Medicaid is administered on a day-to-day basis by the states. The federal government pays for a majority of it and oversees how the states run their programs. In that context, the state Medicaid agency and the state fraud control unit have a primary role in identifying where there might be fraud, investigating, and then, in appropriate cases, prosecuting. The federal government also has a role, however. Depending on the scope of the fraud, it could involve the FBI. It could involve the Office of Inspector General at the Department of Health and Human Services. So there’s both federal and state presence, but the primary responsibilities were the states’. 

Rovner: We know that Minnesota has been experiencing a Medicaid fraud problem, because both the state and the federal government have been working on it for more than a year now. What is the Trump administration doing in Minnesota? And why is this different from what the federal government has traditionally done when it’s trying to ensure that states are appropriately trying to minimize fraud? 

Schneider: Well, usually the vice president of the United States does not get up at a White House press conference and announce he and the Centers for Medicare & Medicaid Services are withholding $260 million in federal funds, called a deferral. That is highly, highly unusual. And normally the head of the Centers for Medicare & Medicaid Services does not go and make videos in the state before something like this is announced. So I would say that this is way out of the ordinary, and I think it has to do with some animus in the administration towards Gov. [Tim] Walz and his administration. 

Rovner: Right. Gov. Walz, for those who don’t remember, was the vice presidential candidate in 2024 running against President Trump, who did win, in fact. But there have been two different efforts to withhold Medicaid money for Minnesota, right? 

Schneider: Yeah. Now you’re into the Medicaid weeds, but since you asked the question, I’ll take you there. So in January, the administra— the Center for Medicare & Medicaid Services — we’ll call them CMS here — they announced they were going to withhold about $2 billion a year going forward, not looking back but going forward, in matching funds that the federal government would otherwise pay to the state of Minnesota for the services that it was providing to its over 1 million beneficiaries. In February at this White House press conference, what the vice president announced was withholding temporarily — we’ll see how temporary it is — but withholding temporarily $260 million in federal Medicaid matching funds that applied to state spending that’s already occurred, happened in the past, happened in the quarter ending Sept. 30, 2025. So both the past expenditures and future expenditures are targets for these CMS actions. 

Rovner: So what happens if the federal government actually doesn’t pay the state this money? I assume more than people who are committing fraud would be impacted. 

Schneider: Well, let’s be clear. The amounts of money here, there’s no relationship between those and however much fraud is going on in Minnesota. And there has been fraud against Medicaid in Minnesota. Everybody’s clear about that. The state is clear about it. The feds are clear about it. But $2 billion going forward in a year, $1 billion going, looking backwards, $260 million times four — there’s no relationship between those amounts, right? Should they come to pass —and all of this is still in process — should those amounts come to pass, you’re looking at, depending on who’s doing the estimates, between 7 and 18% of the amount of money the federal government pays, helps the state with, each year in Medicaid. That’s just an enormous hole for a state to fill, and it doesn’t have many good options. It can cut eligibility. It can cut services. It can cut reimbursement rates. Filling in that hole with state revenues, that’s going to be a real stretch. 

Rovner: So it’s not just Minnesota. Now the administration says it is seeing concerning things going on in New York and has launched a probe there. Is there any indication that this administration is going after states that are not run by Democrats? 

Schneider: So the only letters that we’ve seen from the administration have been to California, New York, and Maine. There may be other letters out there. We only access the public record. So so far, based on what we know, it’s just been Democratically run states. 

Rovner: As long as I’ve been covering this, which is now a long time, fraud-fighting has been pretty bipartisan. It’s been something that Congress has worked on, Democrats and Republicans in Congress, Democrats and Republicans in the states. What’s the danger of politicizing fraud-fighting, which is what certainly seems to be going on right now? 

Schneider: Yeah, that’s a terrific point. So it always has been bipartisan, because money is green. It’s not red. It’s not blue. It’s green. And trying to keep bad actors from ripping it off from Medicaid or Medicare has always been a bipartisan undertaking. The reason that’s important, particularly in a program like Medicaid, where the federal government and the state have to talk to one another when they are flagging potential fraud, when they’re investigating it, when they’re prosecuting it, you don’t want the agencies tripping all over one another. You want them sharing information as necessary, etc. When that gets politicized, it’s very bad for the results and for the effective operation of the program. 

Rovner: Well we will keep watching this space, and we’ll have you back to explain it more. Andy Schneider, thank you very much. 

Schneider: Julie Rovner, thank you very much. 

Rovner: OK, we’re back. Now it’s time for our extra-credit segment. That’s where we each recognize the story we read this week we think you should read, too. Don’t worry if you miss it. We will post the links in our show notes on your phone or other mobile device. Anna, why don’t you start us off this week? 

Edney: Sure. Mine is in The Wall Street Journal. It’s [“The Boom in Autism Therapy Is Medicaid’s Fastest-Growing Jackpot”]. This is a look at the booming business of providing therapy to children with autism. And that’s particularly been big in the Medicaid program. And I don’t want to give away too much, because there are just so many jaw-dropping details in this. So I guess the reporters were able to kind of go through the data and billing records in a way that showed some of these companies and what they were doing and how they were becoming millionaires, people who had never done anything in autism before. So if you enjoy a sort of jaw-dropping read, I think you should take a look at it. 

Rovner: Yeah, jaw-dropping is definitely the right description. Joanne. 

Kenen: So I sort of rummaged around the internet to the less widely read sources, and I came across this great story from the Idaho Capital Sun by Laura Guido. It has a long headline. Reminder that 988 is the mental health crisis line and suicide help. The headline is: “988 Ended His Call. Now an Idaho Teen Is Pushing for a Fix to the State’s Parental Consent Law.” The story is that a 15-year-old boy named Jace Woods called two years ago — so this still hasn’t been fixed after two years — and they cut him off. They sort of gently cut him off. But they can’t talk to these kids who have, who are in crisis, without parental consent. They do a quick assessment. If they think someone’s life is immediately in danger right then and there, they can stay on. But a kid who’s what they call suicidal ideation, seriously depressed and at risk, and knows he’s at risk or she’s at risk, and made this phone call, they don’t talk to them unless they think it’s imminent. So it also affects, these parental, it affects sexual health and STDs and abortion and whole lot of other things. 

Rovner: That’s what it was for. 

Kenen: That was the initial reason, but it got bigger. So a kid who calls in a crisis can get no help at all. And even in those emergency situations where they can stay on the line and try to get emergency help if they do think a kid’s in imminent danger, they’re not allowed to make a follow-up call to make sure they’re OK. So this kid has been trying for two years. There’s a state lawmaker. They’re refining a law. They say it’s, they’re refining a bill. They say it’s going to go through. But really this, talk about unintended consequences. We have a national mental health crisis, particularly acute for teens. This is not solving any problems. 

Rovner: It is not. Shefali. 

Luthra: My story is in The New York Times. It is by Apoorva Mandavilli. The headline is “States Move To Limit Access to H.I.V. Treatment.” And it’s just a good story about what is happening with the Ryan White AIDS Drug Assistance Programs, which people use to get their HIV medications paid for or for free. They get insurance support. And these are really important. Funding has been pretty flat for quite some time because they’re funded by Congress. And what the story gets into is that with growing financial pressure on these programs, there is more-expensive drugs, there are more-expensive insurance premiums, more people might be losing Medicaid. States are having to make very difficult choices, and they are cutting benefits. They are changing who is eligible, because it’s getting more expensive and there is more need and there is no support coming. And I wasn’t really on top of this and did not know what was going on, and I just thought it was interesting and a very useful look at some of the consequences of the policy choices that are making all of these health programs more expensive and health care, in general, harder to afford. 

Rovner: My extra credit this week is from The Marshall Project. It’s called “The Harrowing Journey Home for Families Leaving Immigration Detention.” It’s by Shannon Heffernan and Jesse Bogan and Anna Flagg. It answers the question that I’ve been wondering about since the whole immigration crackdown began, which is: What happens to the people who are snatched off the streets or out of their cars or homes, flown to a distant state, and then someone says: Oops, sorry. You can go. How do you get home from Texas or Louisiana to Minnesota or Massachusetts? Authorities don’t give you plane or even bus tickets to get back to where you were picked up, even though that’s where most of those being released are required to go to report back to immigration authorities. It turns out there’s a small network of charities that is helping. But as the story details pretty vividly, the harm to these families doesn’t end when their detention does./ 

OK. That’s this week’s show. As always, thanks to our editor, Emmarie Huetteman, and our producer-engineer. Francis Ying. A reminder: What the Health? is now available on WAMU platforms, the NPR app, and wherever you get your podcasts, as well as, of course, kffhealthnews.org. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can still find me on X, @jrovner, or on Bluesky, @julierovner. Where are you guys hanging these days? Shefali? 

Luthra: I am at Bluesky, @shefali. 

Rovner: Anna. 

Edney: X and Bluesky, @annaedney. 

Rovner: Joanne. 

Kenen: A little bit of Bluesky and more on LinkedIn, @joannekenen. 

Rovner: We will be back in your feed next week. Until then, be healthy. 

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Jamie Estrada of Albuquerque, New Mexico, twice received injections of lidocaine in his upper spine to test if a permanent nerve ablation would treat his chronic neck pain. His pain vanished — until the numbing agent wore off about six hours later. The real zinger: His insurer was billed $28,000 for each 10-minute procedure.

Mark McCullick of Longmont, Colorado, was sent for a whole-body PET scan to find out whether his prostate cancer was back. The two-hour scan showed no evidence of cancer, but the $77,000 bill sent to the company that administered his insurance alarmed him.

Medical inflation has steadily outpaced general inflation for years, with bills for many brief, routine procedures reaching tens of thousands of dollars.

These cases highlight the questions that haunt the American health system and the patients caught in its grip: What is a reasonable price for any health care visit or procedure, and how is it determined? How hard do insurers, the purported stewards of the patient’s hard-earned health dollars, fight to lower charges, and how closely do they scrutinize bills for accuracy?

Smith, Estrada, and McCullick’s cases are all “chargemaster” bills, calculated from the master price list that health providers place on services. Patients who have insurance don’t generally pay them. But they matter because they are often the starting point for the negotiated price the insurer agrees is reasonable to pay for the services. Patients are typically responsible for 10% to 20% of the negotiated price, their coinsurance — and when prices are this high, that can be a big number. What’s more, those negotiated rates are difficult for patients to access (until they get the bill) and seemingly arbitrary.

Also, because health insurers can offset high outlays one year by raising premiums and deductibles the next, they have little incentive to bargain hard for good deals for the patients they cover. So patients all pay unknowingly, indirectly.

In the cases of Smith and Estrada, their insurers paid the majority without questions. Penn State’s Hershey Medical Center, which treated Smith, received $61,000, or 62% of what it charged. New Mexico Surgery Center Orthopaedics, which treated Estrada, received $46,000, or 82%.

McCullick’s insurer, on the other hand, said it would pay Intermountain Health just 28% of his $77,000 bill. Then came another curveball: The hospital, which said it had gotten preauthorization, discovered after the fact that his scan was not covered. So it billed McCullick the full chargemaster rate of $77,000 — or, it offered, he could pay the cash rate of $14,259.

In an emailed statement, Chris Bond, a spokesperson for AHIP, the leading trade group for health insurers, blamed hospitals for the trouble, saying that plans are “focused on making benefits and coverage as affordable as possible for their members,” and that: “As the largest single category per premium dollar spent, increases in the cost of hospital-based care have an outsized impact on premiums.”

In a health system in which prices can vary exponentially with little transparency, how can patients afford to get sick?

‘It Makes No Sense’

Americans listed health care as a top priority for government in 2026, according to an Associated Press-NORC poll, expressing particular concern about cost, access, and insurance coverage.

The first Trump administration required insurers and hospitals to publish files containing cash, gross, and negotiated prices for various items and services. These raw, machine-readable price lists — often hundreds of pages filled with medical billing codes — have proved of little use to patient-customers.

Five years later, they’ve been ingested, parsed, and enriched by academics and startups, shedding light on the often-shocking disparities in prices and how they’ve come to exist.

“When we look at the data, whether it’s from a chargemaster or what insurers paid, it’s all over the map — it makes no sense,” said Marcus Dorstel, senior vice president of operations at Turquoise Health, a price transparency startup with payers and providers as clients. “The variation is huge, even in a specific area.”

When researchers at the Johns Hopkins Bloomberg School of Public Health looked at the data, they discovered that the price different insurers pay for the same billed charges “can be three or more times different at the same hospital,” said Ge Bai, a professor of health care accounting who was among the researchers.

The prices insurers pay are determined by numerous factors, including what’s in their contracts with health systems. Some health plans, such as Smith’s, automatically pay a percentage of the hospital’s billed charges, incentivizing hospitals to increase their rates. Hershey Medical Center increased its prices for 11 common hospital billing codes by an average of about 30% from 2023 to 2025, Dan Snow, a data scientist at Turquoise Health, calculated for this article. But those prices were not much different than those of other hospitals in Pennsylvania.

In other cases, an insurer might agree to pay a health system a case rate — a standard rate for a type of care, say a colonoscopy or an inpatient stay for pneumonia.

But there’s a lucrative catch, called a “carve-out,” which refers to a particular benefit that’s negotiated and paid separately. If the hospital used expensive drugs or devices, for instance, they can be billed in addition to the bundled case rate, with no limits on hospital markups. That was the case with McCullick’s PET scan; about 80% of the charge was not for the scan, but for a new kind of drug injected before the scan to detect cancer.

Most often the final prices depend on the relative negotiating power of the insurer and the health system: Which side has enough market sway to walk away if the other doesn’t meet its demands?

Such factors “can explain the price variations and patterns that we see,” Dorstel said. “In some markets insurers are price-makers, and in others they are price-takers.”

For Insurers, Paying More Is Profitable

Insurers aren’t incentivized to lower prices, because high prices mean they “get a slice of a bigger pie,” Bai said.

By law, insurers must spend 80% or 85% of premiums on patient care. But when prices rise, they can pass on the increase to customers in the form of higher premium costs and still meet their legal obligation. So higher premiums mean less money for the patient and more profit for the insurer.

For each spinal injection Estrada received, his insurance company’s contracted rate was $23,237.50. Estrada’s coinsurance was $5,166.20. With a high-deductible plan, he was asked to pay all of that more than $5,000 bill.

When he called to challenge the big bill, he said, the surgery center’s administrator told him the charges were the result of a “legacy contract” with the insurer that is “advantageous” and “favorable” to the center.

New Mexico Surgery Center Orthopaedics’ charges are many times those of the hospital where the center’s doctors admit patients, for example; there, Estrada’s insurance company’s contracted rate for the same spinal injection is just $2,058.67. And compared with the roughly $20,000 the insurer paid for each of Estrada’s injections, other insurers pay the center about $700 for the same procedure, Snow found.

The surgery center is part of a national group that owns more than 535 surgical facilities, United Surgical Partners International, which in turn is owned by Tenet Healthcare, a for-profit health conglomerate. That kind of market dominance can lend companies the negotiating power to charge — and get paid — what they want, Bai said.

The surgery center, United Surgical Partners International, and Tenet Healthcare did not reply to multiple requests for comment from KFF Health News.

With charges prenegotiated, insurers have little incentive to scrutinize questionable bills. When Smith asked for an itemized bill for her surgery, she discovered that she had been billed for two surgeries: one for the ectopic pregnancy removal and another because the surgeon noticed signs of endometriosis and performed a biopsy. Both were billed at the contracted rate of $37,923.

She was livid at the charges, which to her seemed like double-dipping. “That was one surgery,” she said. “There was one incision.”

A Yale University-trained lawyer, Smith consulted the federal Centers for Medicare & Medicaid Services’ correct coding guidelines, which note the two billing codes used for her surgery generally can’t be “billed together for the same patient encounter” because one more or less is bundled with the other.

Smith said she reached out to the Penn State hospital, the insurer, and even the state attorney general without resolution. So she expects she will, reluctantly, have to pay the $5,250 coinsurance that the hospital and insurer say she owes.

In response to questions from KFF Health News, Scott Gilbert, a spokesperson for the health system, did not respond to the specifics of this case, but wrote: “Penn State Health recognizes that health care billing can be confusing and often overwhelming for patients. The process involves many factors, including the type of care provided, where it’s delivered and the details of a patient’s insurance coverage.”

A ‘Reasonable’ Price?

After a reporter sent multiple inquiries to Intermountain Health, McCullick said an agent asked him what would be “a reasonable amount to resolve the situation.”

Sara Quale, a spokesperson for Good Samaritan Hospital, the Intermountain affiliate where he got the PET scan, wrote: “We sincerely regret the frustration this situation has caused Mr. McCullick,” noting that “we have been in consistent contact with him and will continue to follow up as needed.”

McCullick said he wants to pay his fair share but is still trying to figure out what that is — certainly less than the different self-pay prices he’s been offered, which all top $10,000. “The fluid nature of these numbers is mind blowing,” he wrote in an email.

As for Estrada, he was so angry that he decided not to go ahead with the nerve ablation. While he was being prepped for the procedure, Estrada recalled, the physician said he had “heard he might sue” and chastised him for being a troublemaker. The hospital did not respond to a request for comment on the allegations, and Estrada said he had never threatened legal action.

Estrada got off the table and put his shirt back on. “I’m not going to let this person put a big needle into my back.”

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

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She and her husband, Charles, a former high school teacher who goes by Chaz, planned to retire comfortably in the three-bedroom house where they raised their kids about 60 miles northwest of Sacramento.

But early last year, the 63-year-old became unsteady on her feet. One morning in May, she woke up with slurred speech and landed in the hospital, then rapidly lost the ability to move the right side of her body.

In August, as doctors continued to puzzle over a possible diagnosis, the couple received a notice saying that on Jan. 1 their combined health care premium payments through the state insurance exchange would shoot up from $540 a month to $3,899 a month. The reason: Federal enhanced premium subsidies expiring at the end of last year would no longer offset their payment.

They immediately canceled a monthlong cruise they’d been planning with friends and looked through their retirement accounts.

“Now, instead of thinking about where we can go in our retirement, we’re asking the question, ‘Are we still going to be able to stay where we are because of the health care costs?’” said Chaz, who retired in 2021 at age 59.

Then they received more bad news. In October, at the age of 63, Jean was diagnosed with ALS, a debilitating disease that will eventually leave her unable to speak, swallow, or breathe on her own. But Jean’s condition allowed her to enroll in Medicare, the federal health insurance program that covers adults 65 and older and people with disabilities. The diagnosis saved them roughly $1,600 a month in premiums — little comfort as Jean lost her ability to walk, bathe, and dress herself.

“It’s kind of morbid that, because of my diagnosis, I got put on Medicare right away, so at least we don’t have to pay that out-of-pocket,” Jean said, sitting in a wheelchair in her living room, a quilt draped over her legs to guard against the intense chills she now often gets. “We’re not going to get buried under this.”

Yet the premiums for Chaz’s plan and her Medicare remain a significant strain on their finances. The $2,300 a month they now owe, which includes roughly $342 in premium payments for Jean’s Medicare supplemental insurance, is higher than their monthly mortgage and eats up more than a quarter of their budget.

The Franklins are among the 22 million people across the nation facing greater financial pressure after Congress chose not to extend 2021 enhanced federal subsidies. That assistance helped more than double enrollment in Obamacare plans to over 24 million.

The Congressional Budget Office estimated in 2024 that, without an extension of the tax credits, the number of uninsured Americans would climb by 2.2 million this year alone. As of January, nationwide enrollment in ACA plans was down about 1.2 million year over year, though experts say it could be months before the full effects of rising premiums are known, as people miss payments and lose coverage.

The groups hit hardest will be early retirees, middle-income earners, and people living in high-cost states, said Stacey Pogue, a senior research fellow at the Center on Health Insurance Reforms at Georgetown University. The Franklins are all three.

“They fell off what we call a subsidy cliff,” Pogue said. “It’s very, very shocking, the amount that a person would have to absorb.”

That’s because the expanded tax credits made the biggest difference for people nearing retirement age who sat just above previous income eligibility thresholds, Pogue said. People such as the Franklins, who likely wouldn’t have qualified for financial help before expanded credits were implemented, are now losing that support at a time when insurers have responded to the uncertainty by dramatically raising rates.

Roughly half of people who were expected to lose eligibility for premium tax credits were ages 50 to 64, according to an analysis by KFF, a health information nonprofit that includes KFF Health News.

Republicans who opposed the extension have said the premium assistance went directly to insurance companies rather than consumers, incentivizing fraud and wasteful coverage. They also say the enhanced subsidies, which had no upper income limit for eligibility, were far too generous in capping premium payments at 8.5% of income, no matter how much an enrollee made.

“Most Americans would agree that taxpayers should not be subsidizing the health insurance of someone making $250,000,” U.S. Rep. Ken Calvert, a California Republican who voted against an extension in January, wrote in an Orange County Register op-ed. “I cannot accept the simple extension of a program that will line the pockets of insurers and is riddled with fraud at the expense of the American taxpayer.”

Patient advocates say the premium increases and expiration of subsidies have forced people into difficult choices. “The young people who are healthy are the first to say, I’m going to roll the dice” and forgo coverage, said Rebecca Kirch, executive vice president of policy and programs at the National Patient Advocate Foundation. “Those who are remaining in the system — because they have no choice — are holding off care, they’re holding off their meds, they’re going without necessary food.”

While the Franklins are getting by, they have relied on their sons to pay for a motorized recliner to assist with lifting Jean and a handicap van to transport her. Chaz, who broke a tooth a year ago, delayed fixing it because a crown would cost him $1,000.

This year, the couple will draw $36,000 more than they had anticipated from their retirement savings, most of it to cover Chaz’s insurance premiums.

“I have a nest egg,” Chaz said. “But there’s a lot of people around here who don’t.”

For a while, he was outraged.

“I wish Congress would get off their butts and solve this issue,” said Chaz, who is a registered Republican but blames both sides of the aisle. “You’re so busy bickering over stupid crap and it’s both parties pointing fingers and blaming. Where was this discussion two years ago?”

Now, Chaz said, he’s focused on making Jean, his wife of 27 years, as comfortable as possible.

Before she got sick, they did practically everything together — hiking, traveling, tai chi, amateur photography, and bug-hunting. One of her favorite specimens was the rain beetle, a fuzzy scarab-like insect that can’t feed as an adult, relying solely on fat stores from its larval stages.

In the mornings, Chaz and their sons, Charlie and Louis, take turns lifting Jean, dressing her, and helping her use the bathroom. It’ll be fodder for the counselor, she jokes to her sons, when they inevitably need therapy later in life.

Most days, Jean’s outdoor adventures rarely extend beyond being wheeled to her back patio, where she loves to watch their backyard chickens bobble around. Chaz’s stubbornness makes him a great patient advocate. Charlie always seems to know exactly when she needs a big hug, and Louis tells jokes that can still make her snort with laughter.

“I don’t know what I would do without my boys making me laugh,” she said.

In December, Chaz will turn 65, old enough to qualify for Medicare himself. “After this year — knock on wood — we should be OK,” Jean said, before pausing and shooting her husband a wry smile.

“Well, you’re gonna be OK.”

Are you struggling to afford your health insurance? Have you decided to forgo coverage? Click here to contact KFF Health News and share your story.

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While lawmakers continue to disagree on a way forward, and the politics of affordability keeps the issue front and center, it would be understandable to think these are the only taxpayer-funded health insurance subsidies in the U.S. system.

But that would be wrong.

“The vast majority of people with health insurance get some kind of federal subsidy for it, from Medicaid to Medicare to the ACA to employer-sponsored insurance,” said Larry Levitt, executive vice president for health policy at KFF, a health information nonprofit that includes KFF Health News.

These broad taxpayer supports are rarely discussed, though, as they apply to work-based coverage. So, let’s take a look.

Adding Up the Tax Breaks

Nearly half of the more than $1.1 trillion in annual spending on Medicare, the second-largest program in the federal budget behind Social Security, comes from general federal funds. The rest comes from payroll taxes and the monthly premiums paid by enrollees, who number more than 66 million.

Medicaid — the nation’s largest health insurer, covering more than 70 million low-income people — costs more than $918 billion annually. It’s jointly financed by the federal government (65%) and states (35%).

For both programs, expenses are partially funded with taxpayer dollars. A less obvious form of federal support comes through employer-sponsored health coverage. Here, the impact on the federal bottom line is less visible, as hundreds of billions of dollars never reach the U.S. Treasury because it takes the form of tax breaks for employers and workers.

“It’s a world apart from Medicare, Medicaid, and Obamacare — from the government writing checks to people,” said Michael Cannon, director of health policy studies at the libertarian Cato Institute.

Job-based insurance provides coverage for at least 154 million people under age 65. (By comparison, about 23 million people enrolled in Affordable Care Act plans for this year, generally because they don’t have job-based insurance. Extending the enhanced ACA subsidies that expired at the end of 2025 would cost about $350 billion over a decade, or roughly $35 billion annually.)

In fact, contributions to employer-sponsored health plans are the single-largest “exclusion” — a tax policy that allows certain income to be exempt from taxes — in the federal budget. For this fiscal year, the estimated amount is $451 billion, according to the Joint Committee on Taxation and the Congressional Budget Office.

The money employers spend to offer health coverage to their employees can be written off as a business expense. And workers who receive this benefit don’t have to pay income or payroll taxes on its value.

Those tax savings can be worth hundreds or even thousands of dollars a year for workers. The amount varies, with the biggest breaks going to those with the most expensive health plans and those whose wages put them in the upper tax brackets. Contributions to health savings accounts are among other tax breaks related to health insurance.

But the exclusion can be a difficult concept for insured workers to wrap their heads around, as most employees still contribute a portion of their pay to health coverage.

Even though they’re not taxed on that, “it doesn’t necessarily feel like a subsidy to people,” Levitt said. “They do feel like they’re paying.”

Baked Into the Tax System

The tax treatment evolved along with work-based health insurance policies in the U.S., fueled during World War II, when wage and price controls spurred interest in offering health coverage to lure workers. It was enacted into tax law in 1954.

Backers, which often include labor unions and employers, say it encourages companies to offer health insurance, as most large companies do. Because of the cost, smaller companies are less likely to do so, even with the tax incentive. Also, for workers, getting $1 of health care coverage is worth more than an extra dollar in wages, which would be taxed and, thus, worth less.

Opponents of the tax break, however, note the lost revenue to the Treasury and that the tax exclusion, according to some economists, leads employers and workers to choose the most generous — and expensive — health insurance offered, which they say drives up health care spending. The tax break benefits wealthier workers more than those in lower-income tax brackets, and economists also say the amounts employers pay for health insurance might otherwise be spent on boosting workers’ wages.

While there is currently no pending legislation to modify the tax break, the growing federal deficit has some employer groups worried the policy will change. Benefit experts say the outcome would vary.

“It’s not clear that it would wind up in increased wages for everyone,” said KFF’s Levitt. “Some workers have more negotiating leverage than others.”

Decades of efforts to cap or eliminate the exclusion have all failed.

“It’s had a bipartisan target on its back for 40 years,” said Paul Fronstin, a director at the Employee Benefit Research Institute, a private, nonprofit, nonpartisan organization.

Any change, however, “would raise some revenue, but it’s also a tax increase for workers,” Fronstin noted. “What would that mean, if their taxes go up? Do wages go up because they’re not getting the same tax breaks? There will be winners and losers in that equation.”

Still, because job-based coverage is the way so many Americans get health insurance, some policy experts warn that eliminating or even lowering the exclusion could remove an incentive for employers to offer coverage. While some employers would likely keep offering coverage even without the tax break — because it is a benefit that helps attract and retain workers — it is a huge expense, so others might drop it. Average family premiums cost an employer nearly $27,000 last year, according to KFF.

“These are businesses, which weigh the costs of offering insurance, which have gone up dramatically,” said Elizabeth Mitchell, CEO of the Purchaser Business Group on Health, an organization of large public and private employers that offer health insurance to their workers. “If there’s not some sort of tax incentive, I would expect them to revisit whether they would bear those costs.”

Cannon, of the Cato Institute, considers the tax policy bad because it takes choice away from workers, who might rather have increased wages, even if they are taxed. Those additional wages, he argues, could then be invested in tax-advantaged health savings accounts, used to pay medical costs.

Under the current tax break approach, “you are effectively saying let the employer control a huge chunk of your earnings and enroll in the plan the employer chooses,” he argues.

Employers counter by saying they are better able to negotiate higher-quality, lower-cost health insurance packages than individuals could on their own.

Mitchell, at the employer group, said, “It is challenging for an enormous employer to negotiate fair prices with the large consolidated systems. So it’s hard to imagine how an individual would be able to navigate our current system.”

She also disputes arguments that the tax break leads to higher health care prices, driven by overly generous employer plans that lead insured workers to use more health services.

“That’s a tired economic theory that doesn’t apply in health care,” she said. “People don’t shop for health care because they want more of it. They use health care because they need it. It’s fundamentally different.”

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The idea echoes a policy implemented during his first term, when Trump suggested that requiring hospitals to post their charges online could ease one of the most common gripes about the health care system — the lack of upfront prices. To anyone who’s gotten a bill three months after treatment only to find mysterious charges, the idea seemed intuitive.

“You’re able to go online and compare all of the hospitals and the doctors and the prices,” Trump said in 2019 at an event unveiling the price transparency policy.

But amid low compliance and other struggles in implementing the policy since it took effect in 2021, the available price data is sparse and often confusing. And instead of patients shopping for medical services, it’s mostly health systems and insurers using the little data there is, turning it into fodder for negotiations that determine what medical professionals and facilities get paid for what services.

“We use the transparency data,” said Eric Hoag, an executive at Blue Cross Blue Shield of Minnesota, noting that the insurer wants to make sure providers aren’t being paid substantially different rates. It’s “to make sure that we are competitive, or, you know, more than competitive against other health plans.”

Not all hospitals have fallen in line with the price transparency rules, and many were slow to do so. A study conducted in the policy’s first 10 months found only about a third of facilities had complied with the regulations. The federal Centers for Medicare & Medicaid Services notified 27 hospitals from June 2022 to May 2025 that they would be fined for lack of compliance with the rules.

The struggles to make health care prices available have prompted more federal action since Trump’s first effort. President Joe Biden took his own thwack at the dilemma, by requiring increased data standardization and toughening compliance criteria. And in early 2025, working to fulfill his promises to lower health costs, Trump tried again, signing a new executive order urging his administration to fine hospitals and doctors for failing to post their prices. CMS followed up with a regulation intended to up the fines and increase the level of detail required within the pricing data.

So far, “there’s no evidence that patients use this information,” said Zack Cooper, a health economist at Yale University.

In 2021, Cooper co-authored a paper based on data from a large commercial insurer. The researchers found that, on average, patients who need an MRI pass six lower-priced imaging providers on the way from their homes to an appointment for a scan. That’s because they follow their physician’s advice about where to receive care, the study showed.

Executives and researchers interviewed by KFF Health News also didn’t think opening the data would change prices in a big way. Research shows that transparency policies can have mixed effects on prices, with one 2024 study of a New York initiative finding a marginal increase in billed charges.

The policy results thus far seem to put a damper on long-held hopes, particularly from the GOP, that providing more price transparency would incentivize patients to find the best deal on their imaging or knee replacements.

These aspirations have been unfulfilled for a few reasons, researchers and industry insiders say. Some patients simply don’t compare services. But unlike with apples — a Honeycrisp and a Red Delicious are easy to line up side by side — medical services are hard to compare.

For one thing, it’s not as simple as one price for one medical stay. Two babies might be delivered by the same obstetrician, for example, but the mothers could be charged very different amounts. One patient might be given medications to speed up contractions; another might not. Or one might need an emergency cesarean section — one of many cases in medicine in which obtaining the service simply isn’t a choice.

And the data often is presented in a way that’s not useful for patients, sometimes buried in spreadsheets and requiring a deep knowledge of billing codes. In computing these costs, hospitals make “detailed assumptions about how to apply complex contracting terms and assess historic data to create a reasonable value for an expected allowed amount,” the American Hospital Association told the Trump administration in July 2025 amid efforts to boost transparency.

Costs vary because hospitals’ contracts with insurers vary, said Jamie Cleverley, president of Cleverley and Associates, which works with health care providers to help them understand the financial impacts of changing contract terms. The cost for a patient with one health plan may be very different than the cost for the next patient with another plan.

The fact that hospital prices might be confusing for patients is a consequence of the lack of standardization in contracts and presentation, Cleverley said. “They’re not being nefarious.”

“Until we kind of align as an industry, there’s going to continue to be this variation in terms of how people look at the data and the utility of it,” he said.

Instead of aiding shoppers, the federally mandated data has become the foundation for negotiations — or sometimes lawsuits — over the proper level of compensation.

The top use for the pricing data for health care providers and payers, such as insurers, is “to use that in their contract negotiations,” said Marcus Dorstel, an executive at price transparency startup Turquoise Health.

Turquoise Health assembles price data by grouping codes for services together using machine learning, a type of artificial intelligence. It is just one example in a cottage industry of startups offering insights into prices. And, online, the startups’ advertisements hawking their wares often focus on hospitals and their periodic jousts with insurers. Turquoise has payers and providers as clients, Dorstel said.

“I think nine times out of 10 you will hear them say that the price transparency data is a vital piece of the contract negotiation now,” he said.

Of course, prices aren’t the only variable that negotiations hinge on. Hoag said Blue Cross Blue Shield of Minnesota also considers quality of care, rates of unnecessary treatments, and other factors. And sometimes negotiators feel as if they have to keep up with their peers — claiming a need for more revenue to match competitors’ salaries, for example.

Hoag said doctors and other providers often look at the data from comparable health systems and say, “‘I need to be paid more.’”

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The 59-year-old, who lives in Harrisburg, North Carolina, closed her nonprofit circus arts school last year because she could no longer see well enough to complete paperwork. She then worked making dough at a pizza shop for a bit. Currently, she sorts recyclable materials, including cans and bottles, at a local concert venue. It is her main source of income ― but the work isn’t year-round.

“This place knows me, and this place loves me,” Kelley said of her employer. “I don’t have to explain to this place why I can’t read.”

Kelley, who lives in a camper, survives on less than $10,000 a year. She says that’s possible, in part, because of her Medicaid health coverage, which pays for arthritis and anxiety medications and has enabled doctor visits to manage high blood pressure.

But she worries about losing that coverage next year, when rules take effect requiring millions of people like Kelley to work, volunteer, attend school, or perform other qualifying activities for at least 80 hours a month.

“I’m scared right now,” she said.

Before the coverage changes were signed into law, Republican lawmakers suggested that young, unemployed men were taking advantage of the government health insurance program that provides coverage to millions of low-income or disabled people. Medicaid is not intended for “29-year-old males sitting on their couches playing video games,” House Speaker Mike Johnson told CNN.

But, in reality, adults ages 50 to 64, particularly women, are likely to be hit hard by the new rules, said Jennifer Tolbert, deputy director of the Program on Medicaid and the Uninsured at KFF, a health information nonprofit that includes KFF Health News. For Kelley and others, the work requirements will create barriers to keeping their coverage, Tolbert said. Many could lose Medicaid as a result, putting their physical and financial health at risk.

Starting next January, some 20 million low-income Americans in 42 states and Washington, D.C., will need to meet the activity requirements to gain or keep Medicaid health coverage.

Alabama, Florida, Kansas, Mississippi, South Carolina, Tennessee, Texas, and Wyoming didn’t expand their Medicaid programs to cover additional low-income adults under the Affordable Care Act, so they won’t have to implement the work rules.

The nonpartisan Congressional Budget Office predicts the work rules will result in at least 5 million fewer people with Medicaid coverage over the next decade. Work rules are the largest driver of coverage losses in the GOP budget law, which slashes nearly $1 trillion to offset the costs of tax breaks that mainly benefit the rich and increase border security, critics say.

“We’re talking about saving money at the expense of people’s lives,” said Jane Tavares, a gerontology researcher at the University of Massachusetts Boston. “The work requirement is just a tool to do that.”

Department of Health and Human Services spokesperson Andrew Nixon said requiring “able-bodied adults” to work ensures Medicaid’s “long-term sustainability” while safeguarding it for the vulnerable. Exempt are people with disabilities, caregivers, pregnant and postpartum individuals, veterans with total disabilities, and others facing medical or personal hardship, Nixon told KFF Health News.

Medicaid expansion has provided a lifeline for middle-aged adults who otherwise would lack insurance, according to Georgetown University researchers. Medicaid covers 1 in 5 Americans ages 50 to 64, giving them access to health coverage before they qualify for Medicare at age 65.

Among women on Medicaid, those ages 50 through 64 are more likely to face challenges keeping their coverage than their younger female peers and are likely to have a greater need for health care services, Tolbert said.

These middle-aged women are less likely to be working the required number of hours because many serve as family caregivers or have illnesses that limit their ability to work, Tolbert said.

Tavares and other researchers found that just 8% of the total Medicaid population is considered “able-bodied” and not working. This group consists largely of women who are very poor and have left the workforce to become caretakers. Among this group, 1 in 4 are 50 or older.

“They are not healthy young adults just hanging out,” the researchers stated.

Plus, making it harder for people to maintain Medicaid coverage “may actually undermine their ability to work” because their health problems go untreated, Tolbert said. Regardless, if this group loses coverage, their chronic health conditions will still need to be managed, she said.

Adults often start wrestling with health issues before they’re eligible for Medicare.

If older adults don’t have the means to pay to address health issues before age 65, they’ll ultimately be sicker when they qualify for Medicare, costing the program more money, health policy researchers said.

Many adults in their 50s or early 60s are no longer working because they’re full-time caregivers for children or older family members, said caregiver advocates, who refer to people in the group as “the sandwich generation.”

The GOP budget law does allow some caregivers to be exempted from the Medicaid work rules, but the carve-outs are “very narrow,” said Nicole Jorwic, chief program officer for the group Caring Across Generations.

She worries that people who should qualify for an exemption will fall through the cracks.

“You’re going to see family caregivers getting sicker, continuing to forgo their own care, and then you’re going to see more and more families in crisis situations,” Jorwic said.

Paula Wallace, 63, of Chidester, Arkansas, said she worked most of her adult life and now spends her days helping her husband manage his advanced cirrhosis.

After years of being uninsured, she recently gained coverage through her state’s Medicaid expansion, which means she’ll have to comply with the new work requirements to keep it. But she’s having a hard time seeing how that will be possible.

“With me being his only caregiver, I can’t go out and work away from home,” she said.

Wallace’s husband receives Social Security Disability Insurance, she said, and the law says she should be exempt from the work rules as a full-time caregiver for someone with a disability.

But federal officials have yet to issue specific guidance on how to define that exemption. And experience from Arkansas and Georgia ― the only states to have run Medicaid work programs ― shows that many enrollees struggle to navigate complicated benefits systems.

“I’m very concerned,” Wallace said.

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“Evitaba salir en grupo. Dejé de jugar a las cartas, de ir a los estudios de la Biblia e incluso dejé de ir a la iglesia”.

Su audiólogo no pudo darle una solución a Grutzmacher, enfermera jubilada de Elgin, Illinois. Pero ella misma encontró el programa de implantes cocleares de la Universidad Northwestern.

Allí, Krystine Mullins, audióloga que evalúa la audición de los pacientes y los asesora sobre sus opciones, le explicó que usualmente implantar de manera quirúrgica este dispositivo electrónico solía mejorar de manera sustancial la capacidad del paciente para entender las palabras.

“Nunca lo había pensado”, dijo Grutzmacher.

Que tuviera 84 años era, en sí mismo, irrelevante. “Mientras estés lo suficientemente sano como para someterte a una cirugía, la edad no es un problema”, dijo Mullins. Hacía poco, una paciente de Northwestern había tenido un implante a los 99.

Algunos pacientes deben reflexionar sobre esta decisión, dado que después de la operación, una audición más clara aún requiere meses de práctica y adaptación, y el grado de mejora es difícil de predecir. “No se puede probar con antelación”, dijo Mullins.

Pero Grutzmacher no lo dudó. “No podía seguir como estaba”, dijo en una entrevista telefónica posterior al implante; una entrevista en la que tuvieron que repetirle preguntas, pero que habría sido imposible unas semanas antes. “Estaba completamente aislada”.

La pérdida de audición en adultos mayores sigue siendo algo poco tratado. Epidemiólogos federales han estimado que afecta a aproximadamente 1 de cada 5 personas de entre 65 y 74 años, y a más de la mitad de los mayores de 75.

“Los mecanismos del oído interno no están diseñados para la longevidad”, dijo Cameron Wick, otorrinolaringólogo de los Hospitales Universitarios de Cleveland.

Aunque la pérdida de la audición puede contribuir a la depresión, la desconexión social y el deterioro cognitivo, menos de un tercio de las personas mayores de 70 años que podrían beneficiarse de audífonos los han usado.

Para quienes sí los usan, “si sus audífonos ya no les ofrecen claridad auditiva, deberían solicitar una evaluación para un implante coclear”, dijo Wick.

Hace 25 años, “era una novedad realizar un implante en personas mayores de 80 años”, dijo Charles Della Santina, director del Centro de Implantes Cocleares de Johns Hopkins. “Ahora, es una práctica bastante habitual”.

De hecho, un estudio publicado en 2023 en la revista Otology & Neurotology informó que la implantación coclear estaba aumentando a un ritmo mayor en pacientes mayores de 80 años que en cualquier otro grupo de edad.

Hasta hace poco, Medicare cubría el procedimiento solo para personas con audición extremadamente limitada que podían repetir de forma correcta menos del 40% de las palabras en una prueba de reconocimiento de términos. Sin seguro —el implante coclear puede costar $100.000 o más por el dispositivo, la cirugía, la asesoría y el seguimiento— muchas personas mayores no tienen esta opción.

“Era increíblemente frustrante, porque excluían a los pacientes de Medicare”, dijo Della Santina. (De igual manera, el Medicare tradicional no cubre los audífonos, y los planes Medicare Advantage con beneficios auditivos siguen dejando a los pacientes pagando la mayor parte de la factura).

Luego, en 2022, Medicare amplió la cobertura de implantes cocleares para incluir a los adultos mayores que podían identificar hasta el 60% de las palabras en una prueba de reconocimiento de voz, lo que aumentó el número de pacientes elegibles.

Aun así, aunque la Alianza Americana de Implantes Cocleares estima que los implantes están aumentando aproximadamente un 10% anual, la concientización pública y las derivaciones de audiólogos siguen siendo bajas.

Menos del 10% de los adultos elegibles con pérdida auditiva de moderada a profunda los reciben, según la alianza.

La implantación coclear requiere compromiso. Después de que el paciente recibe pruebas y asesoramiento, la cirugía, que es un procedimiento ambulatorio, suele durar de dos a tres horas. Muchos adultos se someten a cirugía en un oído y continúan usando un audífono en el otro; algunos posteriormente reciben un segundo implante.

El cirujano implanta un receptor interno debajo del cuero cabelludo del paciente e inserta electrodos, que estimulan el nervio auditivo, en el oído interno; los pacientes también usan un procesador externo detrás de la oreja. (Se están realizando ensayos clínicos de un dispositivo completamente interno).

Dos o tres semanas después, una vez que la inflamación disminuye y se retiran los puntos, un audiólogo activa el dispositivo.

“Cuando lo encendamos por primera vez, no le gustará lo que oirá”, advirtió Wick. Las voces inicialmente suenan robóticas, mecánicas. El cerebro tarda varias semanas en adaptarse y los pacientes comienzan a poder descifrar palabras y oraciones con precisión.

“Un implante coclear no es algo que simplemente se activa y funciona”, dijo Mullins. “Se necesita tiempo y algo de entrenamiento para acostumbrarse a la nueva calidad del sonido”. Ella asigna tareas, como leer en voz alta durante 20 minutos al día y ver la televisión mientras lees los subtítulos.

En un plazo de uno a tres meses, “¡boom!, el cerebro empieza a captarlo y la claridad del habla despega”, dijo Wick. A los seis meses, los adultos mayores habrán alcanzado la mayor parte de su claridad mejorada, aunque algunas mejoras continúan durante un año o más.

¿Cuánta mejora? Se mide a través de dos pruebas de audición: la prueba CNC (consonante-núcleo-consonante), en la que se pide a los pacientes que repitan palabras individuales, y la prueba de oraciones AzBio (AzBio Sentence Test), en la que las palabras que se deben repetir forman parte de oraciones completas.

En Northwestern, Mullins explica a los potenciales pacientes mayores que, un año después de la activación, una puntuación AzBio del 60% al 70% (repetir correctamente de 60 a 70 palabras de cada 100) es típica.

Un estudio de Johns Hopkins con aproximadamente 1.100 adultos, publicado en 2023, reveló que, tras el implante, los pacientes de 65 años o más podían identificar correctamente unas 50 palabras adicionales (de un total de 100) en la prueba AzBio, un aumento comparable a los resultados de la cohorte más joven.

Los participantes mayores de 80 años mostraron una mejora similar a la de aquellos entre 60 y 70 años.

“Pasan de tener dificultades para seguir una conversación a poder participar”, afirmó Della Santina, autora del estudio. “Década tras década, los resultados de los implantes cocleares han sido cada vez mejores”.

Además, un análisis de las experiencias de 70 pacientes mayores en 13 centros de implantes, del cual Wick fue el autor principal, reveló no solo mejoras auditivas clínicamente importantes, sino también una mejor calidad de vida.

Las puntuaciones en una prueba cognitiva estándar también aumentaron: luego de seis meses de uso de un implante coclear, el 54% de los participantes aprobó la prueba, en comparación con el 36% antes de la cirugía. Estudios centrados en personas de entre 80 y 90 años han demostrado que quienes presentan deterioro cognitivo leve también se benefician de los implantes.

Sin embargo, “somos cautelosos y no prometemos demasiado”, afirmó Wick. Por lo general, cuanto más tiempo lleven los pacientes mayores con una pérdida auditiva significativa, más esfuerzo tendrán que hacer para recuperar la audición y menor será la mejoría que puedan observar.

Una minoría de pacientes siente mareos o náuseas después de la cirugía, aunque la mayoría se recupera rápidamente. Algunos tienen dificultades con la tecnología, incluidas las aplicaciones móviles que ajustan el sonido. Los implantes son menos eficaces en entornos ruidosos, como restaurantes abarrotados, y dado que están diseñados para aclarar el habla, la música puede no sonar bien.

Para quienes se encuentran en el extremo superior de la elegibilidad para Medicare y ya comprenden cerca de la mitad del habla que escuchan, el implante puede no parecer rentable. “El hecho de que alguien sea elegible no significa que sea lo mejor para él”, concluyó Wick.

Para Grutzmacher, sin embargo, la decisión parecía clara. Sus pruebas iniciales revelaron que, incluso con audífonos, solo entendía el 4% de las palabras en el AzBio. Dos semanas después de que Mullins le colocara el implante coclear, Grutzmacher podía entender el 46% con un audífono en el otro oído.

Informó que, tras unos días difíciles, su capacidad para hablar por teléfono había mejorado y, en lugar de subir el volumen del televisor a 80, “lo oigo a 20”, dijo.

Así que estaba haciendo planes. “Esta semana voy a comer con una amiga”, dijo. “Voy a jugar a las cartas con un grupo pequeño de mujeres. Tengo un almuerzo en la iglesia el sábado”.

The New Old Age se produce en colaboración con The New York Times.

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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