President Donald Trump rode to reelection last fall on voter concerns about prices. But as his administration pares back federal rules and programs designed to protect patients from the high cost of health care, Trump risks pushing more Americans into debt, further straining family budgets already stressed by medical bills.

Millions of people are expected to lose health insurance in the coming years as a result of the tax cut legislation Trump signed this month, leaving them with fewer protections from large bills if they get sick or suffer an accident.

At the same time, significant increases in health plan premiums on state insurance marketplaces next year will likely push more Americans to either drop coverage or switch to higher-deductible plans that will require them to pay more out-of-pocket before their insurance kicks in.

Smaller changes to federal rules are poised to bump up patients’ bills, as well. New federal guidelines for covid-19 vaccines, for example, will allow health insurers to stop covering the shots for millions, so if patients want the protection, some may have to pay out-of-pocket.

The new tax cut legislation will also raise the cost of certain doctor visits, requiring copays of up to $35 for some Medicaid enrollees.

And for those who do end up in debt, there will be fewer protections. This month, the Trump administration secured permission from a federal court to roll back regulations that would have removed medical debt from consumer credit reports.

That puts Americans who cannot pay their medical bills at risk of lower credit scores, hindering their ability to get a loan or forcing them to pay higher interest rates.

“For tens of millions of Americans, balancing the budget is like walking a tightrope,” said Chi Chi Wu, a staff attorney at the National Consumer Law Center. “The Trump administration is just throwing them off.”

White House spokesperson Kush Desai did not respond to questions about how the administration’s health care policies will affect Americans’ medical bills.

The president and his Republican congressional allies have brushed off the health care cuts, including hundreds of billions of dollars in Medicaid retrenchment in the mammoth tax law. “You won’t even notice it,” Trump said at the White House after the bill signing July 4. “Just waste, fraud, and abuse.”

But consumer and patient advocates around the country warn that the erosion of federal health care protections since Trump took office in January threatens to significantly undermine Americans’ financial security.

“These changes will hit our communities hard,” said Arika Sánchez, who oversees health care policy at the nonprofit New Mexico Center on Law and Poverty.

Sánchez predicted many more people the center works with will end up with medical debt. “When families get stuck with medical debt, it hurts their credit scores, makes it harder to get a car, a home, or even a job,” she said. “Medical debt wrecks people’s lives.”

For Americans with serious illnesses such as cancer, weakened federal protections from medical debt pose yet one more risk, said Elizabeth Darnall, senior director of federal advocacy at the American Cancer Society’s Cancer Action Network. “People will not seek out the treatment they need,” she said.

Trump promised a rosier future while campaigning last year, pledging to “make America affordable again” and “expand access to new Affordable Healthcare.”

Polls suggest voters were looking for relief.

About 6 in 10 adults — Democrats and Republicans — say they are worried about being able to afford health care, according to one recent survey, outpacing concerns about the cost of food or housing. And medical debt remains a widespread problem: As many as 100 million adults in the U.S. are burdened by some kind of health care debt.

Despite this, key tools that have helped prevent even more Americans from sinking into debt are now on the chopping block.

Medicaid and other government health insurance programs, in particular, have proved to be a powerful economic backstop for low-income patients and their families, said Kyle Caswell, an economist at the Urban Institute, a think tank in Washington, D.C.

Caswell and other researchers found, for example, that Medicaid expansion made possible by the 2010 Affordable Care Act led to measurable declines in medical debt and improvements in consumers’ credit scores in states that implemented the expansion.

“We’ve seen that these programs have a meaningful impact on people’s financial well-being,” Caswell said.

Trump’s tax law — which will slash more than $1 trillion in federal health spending over the next decade, mostly through Medicaid cuts — is expected to leave 10 million more people without health coverage by 2034, according to the latest estimates from the nonpartisan Congressional Budget Office. The tax cuts, which primarily benefit wealthy Americans, will add $3.4 trillion to U.S. deficits over a decade, the office calculated.

The number of uninsured could spike further if Trump and his congressional allies don’t renew additional federal subsidies for low- and moderate-income Americans who buy health coverage on state insurance marketplaces.

This aid — enacted under former President Joe Biden — lowers insurance premiums and reduces medical bills enrollees face when they go to the doctor or the hospital. But unless congressional Republicans act, those subsidies will expire later this year, leaving many with bigger bills.

Federal debt regulations developed by the Consumer Financial Protection Bureau under the Biden administration would have protected these people and others if they couldn’t pay their medical bills.

The agency issued rules in January that would have removed medical debts from consumer credit reports. That would have helped an estimated 15 million people.

But the Trump administration chose not to defend the new regulations when they were challenged in court by debt collectors and the credit bureaus, who argued the federal agency had exceeded its authority in issuing the rules. A federal judge in Texas appointed by Trump ruled that the regulation should be scrapped.

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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For two decades, Washington, D.C., pediatrician Lanre Falusi has counseled parents about vaccine safety, side effects, and timing. But this year, she said, the conversations have changed.

“For the first time, I’m having parents of newborns ask me if their baby will still be able to get vaccines,” Falusi said.

Throughout the country, pediatricians say anxious parents are concerned about access to routine childhood immunizations, especially those with children on Medicaid, the government insurance program for low-income families and people with disabilities. Medicaid covers 4 in 10 children in the U.S.

“It really became an issue when RFK Jr. stepped into the role of HHS secretary,” said Deborah Greenhouse, a pediatrician in South Carolina.

The concern accelerated after the shake-up of a key Centers for Disease Control and Prevention vaccine advisory body in June, raising fears that millions of American families could soon have to pay out-of-pocket for shots now covered by their health insurance.

Health and Human Services Secretary Robert F. Kennedy Jr., a longtime anti-vaccine activist, removed all 17 members of the CDC’s Advisory Committee on Immunization Practices, the panel responsible for recommending which shots are included in the nation’s adult and childhood immunization schedules.

Kennedy replaced the panelists with new members aligned with his views, prompting alarm among medical professionals and public health experts.

“People should be worried about what’s going to happen to the availability of vaccines for children,” said Jennifer Tolbert, deputy director of the Program on Medicaid and the Uninsured at KFF, a national health information nonprofit that includes KFF Health News.

Under the Affordable Care Act, health insurers are required to cover all ACIP-recommended vaccines. States and other jurisdictions use the childhood vaccine schedule to set immunization requirements for schoolchildren. ACIP’s recommendations also determine which vaccines get covered by the Vaccines for Children Program, a CDC-funded initiative that provides free immunizations to low-income and uninsured children. Half of children in the U.S. are eligible for the VFC program.

If the new ACIP members withdraw support for a particular vaccine and the CDC director agrees, Tolbert said, the consequences would be immediate. “It would automatically affect what is covered and therefore which vaccines are available to children on Medicaid,” she said.

Health insurance companies have not yet said how they would alter coverage, but Tolbert said such a move would open the door for private insurers to refuse to cover the vaccine.

Pediatricians worry about a future where parents might have to choose — pay hundreds of dollars out-of-pocket for shots or leave their kids unprotected.

The health insurance industry group AHIP said that health plans “continue to follow federal requirements related to coverage of ACIP-recommended vaccines and will continue to support broad access to critical preventive services, including immunizations.”

Pediatricians say news about President Donald Trump’s new budget law, which is expected to reduce Medicaid spending by about $1 trillion over the next decade, also prompted questions from parents.

While parents may be worried about losing their Medicaid, the law doesn’t mention vaccines or change eligibility or benefits for children’s Medicaid, Tolbert said. But less federal funding means states will have to make decisions about who is covered and which services are offered.

To raise the revenue needed to pay for Medicaid, states could raise taxes; move money earmarked for other spending, such as education or corrections; or, more likely, reduce Medicaid spending.

“And they may do that by cutting eligibility for optional populations or by cutting services that are optional, or by reducing payments to providers in the form of provider rates,” Tolbert said. “It’s unclear how this will play out, and it will likely look different across all states.”

In May, Kennedy announced in a post on X that the CDC is no longer recommending the covid-19 vaccine for healthy children and pregnant women. The move prompted a lawsuit by the American Academy of Pediatrics and other physician groups that seeks to freeze Kennedy’s directive.

In June, the new ACIP members appointed by Kennedy voted to recommend that adults and children no longer receive flu vaccines with thimerosal, a preservative rarely used in some flu vaccines. Anti-vaccine activists, including Kennedy, have rallied against thimerosal for decades, alleging links to autism despite no evidence of any association.

“There is no cause for concern,” Department of Health and Human Services spokesperson Emily Hilliard said in a statement. “As Secretary Kennedy has stated, no one will be denied access to a licensed vaccine if they choose to receive one.”

“When the ACIP committee met last month, they reaffirmed that flu vaccines will remain accessible and covered, and they emphasized safety by ensuring these vaccines are mercury-free,” Hilliard wrote. “The Vaccines for Children (VFC) program continues to provide COVID-19 vaccines at no cost for eligible children when the parent, provider, and patient decide vaccination is appropriate. Medicaid will continue to reimburse the administration fee.”

But the possibility that a vaccine could be restricted or no longer covered by insurance is already changing how parents approach immunization. In Falusi’s practice, parents are scheduling appointments to coincide precisely with their child’s eligibility, sometimes making appointments the same week as their birthdays.

Melissa Mason, a pediatrician in Albuquerque, New Mexico, has evaluated some patients who contracted measles during the multistate outbreak that started in neighboring Texas.

She’s concerned that any new limitations on access or reimbursement for childhood vaccines could lead to even more preventable illnesses and deaths.

Nationally, there have been more than 1,300 measles cases since January, including three deaths, according to the CDC. “We’re seeing this outbreak because vaccination rates are too low and it allows measles to spread in the community,” Mason said.

Children and teens account for 66% of national measles cases. Mason has begun offering the measles vaccine to infants as young as 6 months old, a full six months earlier than standard practice, though still within federal guidelines.

Last year, overall kindergarten vaccination rates fell in the U.S. At the same time, the number of children with a school vaccination exemption continued to rise.

Pertussis, or whooping cough — another disease that can be deadly to young children — is spreading. As of July 5, more than 15,100 cases had been identified in U.S. residents this year, according to the CDC.

Mason said pertussis is especially dangerous to babies too young to receive the vaccine.

For now, pediatricians are trying to maintain a sense of urgency without inciting panic.

In Columbia, South Carolina, Greenhouse used to offer families a flexible age range for routine vaccinations.

“I’m not saying that anymore,” the pediatrician said.

She now urges parents to get their children vaccinated as soon as they are eligible.

She described anxious parents asking whether the HPV vaccine, which helps prevent cervical cancer, can be administered to children younger than the recommended age of 9.

“I actually had two parents today ask if their 7- or 8-year-olds could get the HPV shot,” Greenhouse said. “I had to tell them it’s not allowed.”

With the vaccine requiring multiple doses months apart, Greenhouse fears time may run out for families to get the series covered by insurance. If they have to pay out-of-pocket, she’s afraid some families may choose not to get the second dose. A second dose could cost about $300 if no longer covered by insurance.

“I cannot be 100% sure what the future looks like for some of these vaccines,” Greenhouse said. “I can tell you it’s a very scary place to be.”

Kennedy’s newly appointed vaccine advisory committee is expected to hold its next public meeting as soon as August.

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

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The Host Julie Rovner KFF Health News @jrovner @julierovner.bsky.social Read Julie's stories. 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.

Much of the hubbub in health care this year has been focused on Medicaid, which faces dramatically reduced federal funding as the result of the huge budget bill signed by President Donald Trump earlier this month. But now the attention is turning to the Affordable Care Act, which is facing some big changes that could cost many consumers their health coverage as soon as 2026.

Meanwhile, changes to immigration policy under Trump could have an outsize impact on the nation’s health care system, both by exacerbating shortages of health workers and by eliminating insurance coverage that helps keep some hospitals and clinics afloat.

This week’s panelists are Julie Rovner of KFF Health News, Julie Appleby of KFF Health News, Jessie Hellmann of CQ Roll Call, and Alice Miranda Ollstein of Politico.

Panelists Julie Appleby KFF Health News @julie_appleby Read Julie's stories. Jessie Hellmann CQ Roll Call @jessiehellmann @jessiehellmann.bsky.social Read Jessie's stories. Alice Miranda Ollstein Politico @AliceOllstein @alicemiranda.bsky.social Read Alice's stories.

Among the takeaways from this week’s episode:

• Many Americans can expect their health insurance premiums to rise next year, but those rate hikes could be even bigger for the millions who rely on ACA health plans. To afford such plans, most consumers rely on enhanced federal government subsidies, which are set to expire — and GOP lawmakers seem loath to extend them, even though many of their constituents could lose their insurance as a result.
• Congress included a $50 billion fund for rural health care in Trump’s new law, aiming to cushion the blow of Medicaid cuts. But the fund is expected to fall short, especially as many people lose their health insurance and clinics, hospitals, and health systems are left to cover their bills.
• Abortion opponents continue to claim the abortion pill mifepristone is unsafe, more recently by citing a problematic analysis — and some lawmakers are using it to pressure federal officials to take another look at the drug’s approval. Meanwhile, many Planned Parenthood clinics are bracing for an end to federal funding, stripping money not only from busy clinics where abortion is legal but also from clinics that provide only contraception, testing for sexually transmitted infections, and other non-abortion care in states where the procedure is banned.
• And as more states implement laws enabling doctors to opt out of treatments that violate their morals, a pregnant woman in Tennessee says her doctor refused to provide prenatal care, because she is unmarried.

Also this week, Rovner interviews Jonathan Oberlander, a Medicare historian and University of North Carolina health policy professor, to mark Medicare’s 60th anniversary later this month.

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

Julie Rovner: KFF Health News’ “Republicans Call Medicaid Rife with Fraudsters. This Man Sees No Choice but To Break the Rules,” by Katheryn Houghton.  

Julie Appleby: NPR’s “Many Beauty Products Have Toxic Ingredients. Newly Proposed Bills Could Change That,” by Rachel Treisman.  

Jessie Hellmann: Roll Call’s “Kennedy’s Mental Health Drug Skepticism Lands at FDA Panel,” by Ariel Cohen.  

Alice Miranda Ollstein: The Associated Press’ “RFK Jr. Promoted a Food Company He Says Will Make Americans Healthy. Their Meals Are Ultraprocessed,” by Amanda Seitz and Jonel Aleccia.  

Also mentioned in this week’s podcast:

• KFF Health News’ “Insurers and Customers Brace for Double Whammy to Obamacare Premiums,” by Julie Appleby.
• The Congressional Budget Office’s “Estimated Budgetary Effects of Public Law 119-21, to Provide for Reconciliation Pursuant to Title II of H. Con. Res. 14, Relative to CBO’s January 2025 Baseline.”
• The CBO’s “How Changes to Funding for the NIH and Changes in the FDA’s Review Times Would Affect the Development of New Drugs.”
• KFF’s “KFF Health Tracking Poll: Public Views on Recent Tax and Budget Legislation,” by Grace Sparks, Shannon Schumacher, Julian Montalvo III, Ashley Kirzinger, and Liz Hamel.
• The Washington Post’s “Digging Into the Math of a Study Attacking the Safety of the Abortion Pill,” by Glenn Kessler.

click to open the transcript Transcript: Here Come the ACA Premium Hikes

[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, and welcome back 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 health reporters in Washington. We’re taping this week on Thursday, July 24, at 10 a.m. As always, news happens fast and things might’ve changed by the time you hear this. So, here we go. 

Today we are joined via videoconference by Jessie Hellmann of CQ Roll Call. 

Jessie Hellmann: Hi there. 

Rovner: Alice Miranda Ollstein of Politico. 

Alice Miranda Ollstein: Hello. 

Rovner: And my KFF Health News colleague Julie Appleby. 

Julie Appleby: Hi. 

Rovner: Later in this episode we’ll have the first of a two-part series marking the 60th anniversary of Medicare and Medicaid, which is July 30. Medicare historian and University of North Carolina professor Jonathan Oberlander takes us on a brief tour of the history of Medicare. Next week we’ll do the same with Medicaid. But first, this week’s news. 

So, we have talked a lot about the changes to Medicaid as a result of the Trump tax and spending law, but there are big changes coming to the Affordable Care Act, too, which is why I have asked my colleague Julie Appleby to join us this week. Julie, what can people who buy insurance from the ACA marketplaces expect for 2026? 

Appleby: Well, there’s a lot of changes. Let’s talk about premiums first, OK? So there’s a couple of things going on with premiums. It’s kind of a double whammy. So, on the one hand, insurers are asking for higher premiums next year to cover different things. So in the summer they put out their rates for the following year. So there’s been a lot of uncertainty this year, so that’s playing into it as well. But what they’re asking for is some money for rising medical and labor costs, the usual culprits, drug costs going up, that kind of thing. But they’re tacking on some extra percentages to deal with some of the policy changes advanced by the Trump administration and the Republican-controlled Congress. And one key factor is the uncertainty over whether Congress is going to extend those more generous covid-era tax subsidies. So we’re looking at premiums going up, and the ask right now, what they’re asking for, the median ask, is 15%, which is a lot higher. Last year when KFF did the same survey, it was 7%. So we’re getting premium increase requests of a fairly substantial amount. In fact, they say it’s about the highest in five years.  

And then on top of that, it’s still not clear what’s going to happen with those more generous subsidies. And if the more generous subsidies go away, if Congress does not reinstate them, there’ll be costs from that, and people could be paying maybe 75% more than they’re paying this year. And we could talk some more about that. But that’s kind of the double whammy we’re looking at, rising premiums and the potential that these more generous subsidies won’t be extended by Congress. 

Rovner: So there were some things that were specifically in that tax and spending bill that drive up premiums for the ACA, right? Besides not extending the additional subsidies. 

Appleby: Well, that’s the biggest piece of it, but yes. They’re tacking on about 4% of that 15% medium increase is related to the uncertainty. Well, they’re assuming that the tax credits will expire. It was not in the bill. Congress could still act. They have until the end of the year. They could extend those subsidies. So that’s about 4%. But one of the things that people haven’t really been talking about are tariffs, and some of the insurers are asking for 3% because they expect drug costs to go up. So there’s those things that are going on. And then there’s just sort of the uncertainty going forward for insurers about what’s going to happen with enrollment as a result of both these premium increases, and then looking a little bit further down the line, there are some changes in the tax and spending bill and some rules that are going to substantially reduce enrollment. 

So insurers are worried that the people who are going to sign up for coverage are the ones who are most motivated, and those are probably going to be the people who have some health problems. And the folks who aren’t as motivated are going to look at the prices and maybe the additional red tape and will drop out and leave them with a sicker and more expensive pool to cover. So all of that is factoring in with these premium rate increases that they’re trying to put together. Now remember, a lot of these insurers put in these premium increase requests before they knew the outcome of the tax and spending legislation. They could still modify them. 

Rovner: And Jessie, as Julie said, there’s still a chance that Republicans will change their minds on the increased subsidies and tack them onto something. And there’s a big bipartisan health bill on drug prices and other expiring programs that still could get done before the end of the year? Yes? 

Hellmann: There have been discussions about a bipartisan health bill, though the main author of it, Sen. Bill Cassidy, himself even seems kind of skeptical. I talked to him this week, and he’s like, It might happen, it might not. But there are a bunch of other health extenders that Congress will need to get to, like telehealth, some Medicare and Medicaid payment things. So there’s definitely something to attach it to. Republicans are not friendly to the ACA. As you mentioned, they made a bunch of changes to it in this tax and spending bill. So I think the people I talk to think it’s a long shot that they’re going to pass billions of dollars in a subsidy extension in this bill. Though there are Republicans who do care about this issue, like Sen. Lisa Murkowski of Alaska. She’s kind of been sounding the alarm on this. She thinks that Congress needs to do something to mitigate which could be very big premium increases for people. So there is some pressure there, but it doesn’t seem like the people who should be thinking about this right now have started thinking about it much yet. 

Rovner: One presumes they’ll start thinking about it when they start seeing these actual premium increases. I sound like a broken record, but we keep saying, the people who these premium increases are going to hit the hardest are voters in red states. 

Appleby: Last year, in 2024, 56% of ACA enrollees lived in Republican congressional districts and 76% were in states won by President [Donald] Trump. So I’ve got to think they’re thinking about it. When I did the reporting on this story, I spoke with a couple of folks, and they said that some people in Congress are looking at maybe they can mess around or maybe they can do something with the subsidies that’s not keeping them as they are but might deal with a piece of it. For example, there is something called a subsidy cliff. So if you make more than 400% of the federal poverty level, you used to not get any subsidies. That would come back if they don’t extend this. And so 400% of the federal poverty level, you make a dollar more, you don’t get a subsidy. So this year — and this year will be the numbers that next year’s rates are based on — $62,600 for one person is 400% of the federal poverty level and $84,600 for a couple. So people are going to start getting, if they don’t extend the tax credits, they’re going to start getting notification about how much they owe for premiums next year. 

And this is going to be one of the first effects that people are going to see from all these changes in Washington, the tax and spending bill and the other things, when they get these premiums for January. And if they make even a dollar over that, they’re not going to get any subsidy at all. So what I’m told by some of my sources is that maybe they’re thinking about raising that cliff, maybe keeping the cliff but maybe moving it up a little bit to 500% or 600%. But it’s totally unclear. Like you all are saying, nothing may happen. We may go through Dec. 31 and nothing happens, but I’m hearing that they are maybe talking a little bit about that. 

Rovner: Alice. 

Ollstein: Yeah. And there’s a couple interesting dynamics that I think could influence the politics of this and what Congress feels motivated to do or not do. So, like Julie was saying, this would hit in January. And a lot of the stuff in the bill they just passed is designed to not hit until the midterms, but this would hit before the midterms. And so that’s got to be on their minds. And then, like you were saying, not only would this hit Republican voters the hardest, but a reason that’s more true today than it was the last time they took a round at the Affordable Care Act in 2017 is because all of these red states have expanded since then. You have a lot more enrollment, even in states that didn’t expand, and so, like we mentioned, are going to have a lot of Republican voters who get hit and have this sticker shock. And the party in power in Congress and the White House could be to blame. 

Rovner: Yeah. One of the things in 2017, there were, what, 12 million people who were buying coverage on the marketplaces. And now there’s 24 million people who are buying coverage on the marketplaces. So it’s a lot more people, just plain, in addition to a lot more people who are likely in some of these red states. So we will follow this closely. 

Meanwhile, the fallout continues as people find out more about the new tax and spending law. The Congressional Budget Office is out with its final numbers on the bill as enacted. It’s now estimating that 10 million more people will be uninsured in 2034 as a result of the new law. That’s down from the 11.8 million estimate of the original Senate bill. That’s because the parliamentarian bounced the provisions that would’ve punished states using their own money to cover undocumented people. That was not allowed to be considered under the reconciliation procedure. 

We also have a brand-new poll from my colleagues here at KFF that find that more people know about the law than did before it passed, and it’s still unpopular. We’ll post a link to those numbers so you can see just how unpopular it is. As we’ve discussed, lots of Republican senators and House members expressed concern about the impact the Medicaid cuts could have on rural hospitals in particular. So much so that a $50 billion fund was eventually added to the bill to offset roughly $155 billion in rural Medicaid cuts. Even more confusing, that $50 billion is likely to be distributed before some of the cuts begin — as you were just saying, Alice — and not necessarily to just rural areas. So is this $50 billion fund really just a big lobbying bonanza? 

Ollstein: Well, it’s certainly designed to function as softening the blow. But these are different things. The hospital could be propped up and stay open, but if no one has Medicaid to go there, that’s still a problem. And the money is sort of acknowledging that a bunch of people are going to lose their coverage, because it’s meant to give the hospital something to use for uncompensated care for people who have no coverage and come to the ER. But that still means that people who lost their insurance because of other provisions in the bill, they might not be going to their preventive care appointments that would avoid them having to go to the emergency room in the first place, which costs all of us more in the long run. So there’s a lot of skepticism about the efficacy of this. 

Rovner: Jessie, are you seeing the lobbying already begin for who’s going to get this $50 billion? 

Hellmann: Yeah, because the legislation leaves a lot of how the money will be handed out to the HHS [Department of Health and Human Services] secretary, and so that’s something that they’re going to start thinking about. It reminds me a lot of the provider relief fund that was set up during covid. And that didn’t go very well. There were lots of complaints that providers were getting the funding that didn’t need the funding, and the small safety net hospitals weren’t getting enough of the funding. So I’m wondering if they’re going to revisit how that went and try to learn any lessons from it. And then at the same time, like Alice said, this just isn’t a lot of money. It’s not going to offset some of the pain to rural providers that the bill has caused. 

Rovner: Yeah. Well, another piece that we will be watching. Meanwhile, the cuts to SNAP [Supplemental Nutrition Assistance Program] food benefits conflict with another stated goal of this administration, improving health by getting people to eat healthier food. Except, as we know, healthier food is often more expensive. Other than not letting people buy soda and candy with their SNAP cards, has the administration tried to address this contradiction at all? I’m seeing a lot of blank stares. I’m assuming that the answer to that is no. We’re hearing so much about food and unhealthy food, and we’re getting rid of seed oils and we’re getting rid of dyes, but at the same time, it’s the biggest cut ever to nutrition assistance, and yet nobody’s really talking about it, right? 

Appleby: Sounds like, I think, the states are really worried, obviously, because they’re going to have to make up the difference if they can. And so what other programs are they going to cut? So I’m sure they are talking with folks in Congress, but I don’t know how much leverage they’re going to have. Do you guys have any idea whether the states, is there anything else that they can do to try to get some of this funding? 

Rovner: There’s no — I’ve seen no indication. As we said, there’s already some buyer’s remorse on the health side. Last week we talked about [Sen.] Josh Hawley introducing legislation to restore some of the Medicaid cuts that he just voted for, but I haven’t seen anybody talking about restoring any of these nutrition assistance cuts or any of the other cuts, right? 

Appleby: Right. And from what I’ve read, the SNAP cuts won’t fully take effect until after the midterm elections. So maybe we’re just not hearing about it as much because it hasn’t really hit home yet. People are still trying to figure out: What does all this mean? 

Rovner: Well, one thing that has hit home yet, I’ve wanted for a while to highlight what some of the changes to immigration policy are going to mean for health care. It’s not just ending legal status for people who came and have lived in the U.S. legally for years, or reinterpreting, again, the 1996 welfare law to declare ineligible for Medicaid and other programs many legal immigrants who are not yet permanent residents but who have been getting benefits because they had been made legally eligible for them by Congress and the president. One of the big changes to policy came to light last week when it was revealed that immigration officials are now being given access to Medicaid enrollment information, including people’s physical addresses. Why is this such a big deal? Alice, you’ve been following this whole immigration and health care issue, right? 

Ollstein: Yes. Experts are warning that this is very dangerous from a public health perspective. If you deter people from physically wanting to visit a clinic or a doctor out of fear of ICE [Immigration and Customs Enforcement] enforcement there, which we’ve already seen — we’ve already seen ICE try to barge into hospitals and seize people. And so fear of that is keeping people away from their appointments. That makes it harder to manage chronic illnesses. That makes it harder to manage infectious diseases, which obviously impacts the whole community and the whole society. We all bear those costs. We live in an interconnected world. What impacts part of the population impacts the rest of the population. 

And so what you mentioned about the Medicaid data, as well, deters people who are perfectly eligible, who are not undocumented, who have legal status, who are eligible for Medicaid. It deters them from enrolling, which again deters people from using that health care and keeping their conditions in check. And so there’s a lot of concern about how this could play out and how long the effect could last, because there are studies showing that policies from the first Trump administration were still deterring immigrants from enrolling even after they were lifted by the Biden administration. 

Rovner: And we should point out that this whole address thing is a big issue because, as you say, there, maybe, there are a lot of families where there are people who live there who are perfectly, as you say, perfectly eligible. You’re not eligible for Medicaid if you’re not here legally. But they may live in a family, in a household with people who are not here with documentation, and they’re afraid now that if they have their addresses, that ICE is going to come knocking at their door to get, if not them, then their relatives or people who are staying with them. 

Appleby: Yeah. And I think it’s also affecting employment. So nursing homes are already saying that they’re losing some people who are losing their protected status or this or that. So they’re losing employees. Some of them are reporting, from what I’ve read, that they are getting fewer applicants for jobs. This is going to make it even tougher. Many of them already have staffing issues, and the nursing home industry has said, Hey, how come we’re not getting any special consideration? Like maybe some of the farmers or other places are supposedly getting, but I don’t know if that’s actually happening. But why aren’t they being considered and why are they losing some of their workers who are here under protected status, which they’re going to lose? And some of them may also be undocumented — I don’t know. But that’s just the nursing homes. Think of all the people around the country who need help in their homes, and maybe they’re taking care of elderly parents and they hire people, and some of those people may not be documented. And that’s a vast number of folks that we’re never going to hear about, but if they start losing their caregivers as well, I think that’s going to be a big impact as we go forward. 

Rovner: And it’s also skilled health workers who are here on visas who are immigrants. 

Appleby: Right. 

Rovner: In rural areas in particular, doctors and nurses are usually people who have been recruited from other countries because there are not enough people or not health professionals living in those rural areas. The knock-on effect of this, I think, is bigger than anybody has really sort of looked at yet. 

Ollstein: Absolutely. States have even been debating and in some cases passing legislation to make it easier for foreign medical workers to come practice here, making it so that they don’t have to redo their residency if they already did their residency somewhere abroad, things like that, because there’s such shortages right now, especially in primary care and maternal care and a lot of different areas. 

Rovner: Yeah. This is another area that I think we’re only just beginning to see the impact of. Well, there is also news this week in Trump administration cuts that are not from the budget bill. In a report from the Congressional Budget Office that’s separate from the latest budget reconciliation estimate, analysts said that the Trump administration’s proposed cuts to the budgets of the National Institutes of Health and the Food and Drug Administration could reduce the number of new drugs coming to market. That would not only mean fewer new treatments and cures but also a hit to the economy. And apparently it doesn’t even take into account the uncertainty that’s making many researchers consider offers to decamp to Canada or Europe or other countries. There’s a real multiplier effect here on what’s a big part of U.S. innovation. 

Hellmann: I’ve been talking to people on the Hill about this who traditionally have been big supporters of the NIH and authorizing and appropriating increases for the NIH every year. And they are still kind of playing a little coy. The White House is suggesting a budget cut at the NIH of 40%, which would be massive. It’s so massive that the CBO report was like: We cannot estimate the impact of this. We’re going to estimate a smaller hypothetical. Because they just can’t. 

And so I think it’ll be interesting to see how it plays out in the appropriations process. You do have senators who are more publicly concerned about it, like Sen. Susan Collins of Maine, who obviously is on the Appropriations Committee. So we might see a situation where Congress ignores the budget request. That usually happens, but these are weird times. And so I think there are questions about, even if they do, if Congress does proceed as normal and appropriate the money that they typically do for NIH, what is the administration going to do with it? They’ve already signaled that they’re fine not spending money that has been appropriated by Congress. And so I think that there’s a big question about that. 

Rovner: At some point, this has to come to a head. We’ve been — as I say, I feel like a broken record on this. We talk about it a lot, that this is money that’s been appropriated by Congress and signed by the president and that we keep hearing that people, particularly at NIH, are not being allowed, for one reason or another, to send out. This is technically illegal impoundment. And at some point it comes to a head. We know that Russ Vought, the head of the Office of Management Budget, thinks that the anti-impoundment law is illegal and that he can just ignore it. And that’s a lot of what’s happening right now. I’m still surprised that it’s the end of July and Congress is going out for the August recess — and Jessie, I know you’re talking to people and they’re playing coy — that they haven’t jumped up and down yet. The NIH in particular has been such a bipartisanly supported entity. If you’ve ever been around the campus in Bethesda, all of the buildings are named after various appropriators of both parties. This is something that is really dear to Congress, and yet they are just basically sitting there holding their tongues. At some point, won’t it stop? 

Hellmann: I think maybe they’re hoping to say something through whatever legislation that they come out with, whatever spending legislation. But, yeah, they’re not being very forceful about it. And I think people are obviously just very afraid of making the Trump administration angry. Lisa Murkowski of Alaska has said this, like she kind of fears the repercussions of making the president mad. And he’s on this spending-cut spree. So I definitely expected more anger, especially the bipartisan history of the NIH has lasted so long. It’s kind of a weird thing to see happen. 

Rovner: Yeah. Of all the things that I didn’t expect to see happen this year, that has to be the thing that I most didn’t expect to see happen this year, which was basically an administration just stopping funding research and Congress basically sitting back and letting it happen. It is still sort of boggling to my mind. Well, we also learned this week about hospitals stopping gender-affirming care of all kinds for minors, under increasing pressure from the administration. And we’re not just talking about red states anymore. Children’s hospitals in California and here in Washington, D.C., have now announced they won’t be offering the care anymore. Wasn’t it just a few months ago when people were moving from red states to blue states to get their kids care? Now what are they going to be able to do? 

Ollstein: I think a lot of what we’re seeing play out in the gender-affirming care fight, it reminds me of the abortion rights fight. There are a lot of themes about the formal health care system being very, very risk-averse. And so rather than test the limits of the law, rather than continuing to provide services while things are still pingponging back and forth in courts, which is the case, they’re saying, just out of caution, We’re just going to stop altogether. And that is cutting off a lot of families from care that they were relying on. And there’s a lot of concern about the physical and mental health impacts on — again, this is very small compared to the general population of trans kids — but it’s going to hit a lot of people. And yeah, like you said, this is happening in blue states as well. There’s sort of nowhere for them to go. 

Rovner: Yeah. We’re going to see how this one also plays out. Well, turning to abortion, we talked last week about how a federal appeals court upheld a West Virginia law aimed at banning the abortion pill mifepristone. And I wondered why we weren’t hearing more from the drug industry about the dangers of state-by-state undermining of the FDA. And lo and behold, here come the drugmakers. In comments letters to the FDA, more than 50 biotech leaders and investors are urging the agency to disregard a controversial study from the anti-abortion think tank the Ethics and Public Policy Center that officials are citing as a reason to reopen consideration of the drug’s approval. Alice, remind us what this study is and why people are so upset about it. 

Ollstein: So it’s not a study, first of all. Even its supporters in the anti-abortion movement admitted, in private in a Zoom meeting that I obtained access to, that it is not a study. This is an analysis that they created. They are not disclosing the dataset that it is based on. It did not go through peer review. And so they are citing their own sort of white-paper analysis put out by an explicitly anti-abortion think tank to argue that abortion pills are more dangerous than previously known or that the FDA has previously acknowledged. There’s been a lot of fact checks and debunks of some of their main points that we’ve been through on this podcast also before. The Washington Post did an in-depth fact check if people want to look that up. But suffice it to say that that has not deterred members of Congress from citing this and to pressure the FDA. 

And now you have the FDA sort of promising to do a review. If you look at the exact wording of what [FDA Commissioner Marty] Makary said, I’m not sure. He said something like, Like we monitor the safety of all drugs, we’re going to blah, blah, blah. And so it’s unclear if there’s anything specific going on. But the threat that there could be, like you said, is really shaking up the drugmaking industry. And you’re hearing a lot of the same alarms that we heard from the pharmaceutical industry when this was before the Supreme Court, when they were afraid the Supreme Court would second-guess the FDA’s judgment and reimpose restrictions on mifepristone. And they’re saying, Look, if we can’t count on this being a process that just takes place based on the science and not politics and not courts coming in 25 years later and saying actually no, then why would we invest so much money in developing drugs if we can’t even count on the rules being fair and staying the same? 

Rovner: Yeah. We will see how this goes. I was surprised, though. We know that that Texas case that the Supreme Court managed to not reach the point of, because the plaintiffs didn’t have standing, is still alive elsewhere. But I didn’t realize that this other case was still sort of chugging along. So we’ll see when the Supreme Court gets another bite at it. Meanwhile, the fight over funding for Planned Parenthood — whose Medicaid eligibility, at least for one year, was canceled by the new budget law — continues in court. This week a judge in Massachusetts gave the group a partial win by blocking the defunding for some smaller clinics and those that don’t perform abortions, but that ruling replaced a more blanket delay on the defunding. So many clinics are now having their funding stopped while the court fight continues. Alice, what’s the impact here of these Planned Parenthood clinics closing down? It’s not just abortion that we’re talking about. In fact, it’s not even primarily abortion that we’re talking about. 

Ollstein: Absolutely. So this is one, it’s set to hit a lot of clinics in states where abortion is legal. And so these are the clinics that are serving a lot of people traveling from red states. And so there’s already an issue with wait times, and this is set to make it worse. But that’s just for abortion. Like you said, this is also set to hit a bunch of clinics in states where abortion is illegal and where these clinics are only providing other services, like birth control, like STI [sexually transmitted infection] testing. And at the same time we’re having a lot of other funding frozen, and so this could really be tough for some of these areas where there aren’t a lot of providers, and especially there are not a lot of providers who accept Medicaid. 

Rovner: Meanwhile, a number of states are passing conscience laws that let health professionals opt out of things like doing abortions or providing gender-affirming care if they violate their beliefs. Well, in Tennessee now we have a story of a pregnant woman who says her doctor refused to provide her with prenatal care, because she’s not married to her partner of 15 years. She said at a congressional town hall that her doctor said her marital status violated his Christian beliefs, and he’s apparently protected by the new Tennessee state law called the Medical Ethics Defense Act. I’ve heard of doctors refusing to prescribe birth control for unmarried women, but this is a new one to me, and I’ve been doing this for a very long time. Are these just unintended consequences of these things that maybe state lawmakers didn’t think a lot about? Or are they OK with doctors saying, We’re not going to provide you with prenatal care if you’re pregnant and not married? 

Ollstein: So one, as we just said, we’re in a situation where there is such a shortage of providers and such a shortage of providers who accept certain coverage that being turned away by one place, you might not be able to get an appointment somewhere else, depending where you live. And so this isn’t just an issue of, Oh, well, just don’t go to that doctor who believes that. People have very limited choices in a lot of circumstances. But I— 

Rovner: Apparently this woman in Tennessee said she’s having to go to Virginia to get her prenatal care. 

Ollstein: Well, exactly. Yeah. Exactly. This isn’t like people have tons of options. And also this is an example of a slippery slope, of if you allow people to be able to refuse service for this reason, for that reason, what else could happen? And some states have more legal protections for things like marital status, and some do not. And so it’s worth thinking through what could be sort of the next wave. 

Rovner: Well, we’re certainly going to see what the outcome of this could be. Well, before we end our news segment this week, I want to give a shoutout to tennis legend Venus Williams, who at age 45 won a singles match at a professional tournament here in Washington this week and said in her post-match interview that she came back to playing because she needed the pro tour’s health insurance to take care of several chronic conditions that she has. So see, even rich athletes need their health insurance. All right. That is this week’s news. Now we will play my interview with Medicare historian Jonathan Oberlander, and then we will come back and do our extra credits. 

I am so pleased to welcome Jonathan Oberlander to the podcast. He’s a professor of social medicine, professor of health policy and management, and adjunct professor of political science at the University of North Carolina School of Medicine in Chapel Hill and one of the nation’s leading experts on Medicare. Jon, welcome to “What the Health?” 

Jonathan Oberlander: Great to see you, Julie. 

Rovner: So Medicare, to me at least, remains the greatest paradox in the paradox that is the U.S. health care system. It is at once both so popular and so untouchable that it’s considered the third rail of politics, yet at its core it’s a painfully out-of-date and meager benefit that nevertheless threatens to go bankrupt on a regular basis. How did we get here? 

Oberlander: Wow. So let’s talk about the benefits for a minute. And I think one of the things we can say about Medicare in 2025 as we mark this 60th anniversary is it still bears the imprint of Medicare in 1965. And when Medicare was designed as a program — and the idea really dates back to the early 1950s — it was not seen as a comprehensive benefit. It was intended to pay for the most consequential costs of medical care, for acute care costs. And so when it was enacted in 1965, the benefits were incomplete. And the problem is, as you know very well, they haven’t been added to all that much. And here we have a population, and all of us know as we get older, we generally don’t get healthier. I wish it was true, but it’s not. Older persons deal with all kinds of complex medical issues and have a lot of medical needs, and yet Medicare’s benefits are very limited, so limited that actually a very small percentage of Medicare beneficiaries have only Medicare. Most Medicare beneficiaries have Medicare plus something else. And that may be an individual private plan that they purchase called a Medigap plan, or maybe a declining number of people have retiree health insurance that supplements Medicare. 

Some low-income Medicare beneficiaries have Medicaid as well as Medicare and they are dual-eligible. Some Medicare beneficiaries have extra benefits through the Medicare Advantage program, which I’m sure— 

Rovner: We’ll get to. 

Oberlander: —we’ll have a lot to say. So the bottom line, though, is Medicare has grown. It has, what, about 70 million Americans rely on Medicare. But the benefit package — with some intermittent exceptions that are significant, such as the addition of outpatient prescription drugs in 2006 — really has not kept pace. 

Rovner: So let’s go back to the beginning. What was the problem that Medicare set out to solve? 

Oberlander: Well, it was both a substantive problem and a political problem. The origins of Medicare are in the ashes, the failure, of the Truman administration proposals for national health insurance during the mid- and late 1940s. And after they had lost repeatedly, health reformers decided they needed a new strategy. So instead of national health insurance, what today we would call a single-payer, federal-government-run program for everybody, they trimmed their ambitions down to, initially, just hospital insurance, 60 days of hospital insurance for elderly Social Security beneficiaries. And that was it. And they thought if they just focused on older Americans, maybe they would tamp down the controversy and the opposition and the American Medical Association and charges of socialized medicine, all things that are really throwing a wrench into plans for national health insurance. It didn’t quite work out as they thought. It took about 14 years from the time Medicare was proposed to enact it. And there was a big, divisive, controversial debate about Medicare’s enactment. But it was fundamentally a solution to that political problem of, how do you enact government health insurance in the United States? You pick a more sympathetic population. 

Now, there was a substantive problem, which was in the 1940s and especially 1950s, private health insurance was growing in the United States for Americans who are working-age, and that growth of employer-sponsored health insurance really left out retirees. They were expensive. Commercial insurers didn’t want to cover them. And the uninsured rate, if you can believe it, for people over age 65, before Medicare, was around 50%. Not 15 but five zero, 50%. And so here you had a population that had more medical needs, was more expensive, and they had less access to health insurance than younger people. And Medicare was created in part to end that disparity and give them access to reliable coverage. 

Rovner: So as you mentioned, Medicare was initially just aimed at elderly Social Security recipients. What were some of the biggest benefit and population changes as the years went by? 

Oberlander: So in terms of populations in 1972, Medicare added coverage for persons who have end-stage renal disease, so people who need dialysis no matter what the age. It’s a lifesaving technology. They can qualify for Medicare. It didn’t really make sense to add it to Medicare — it’s just it was there. So they added it to Medicare. And also a population we don’t talk nearly enough about, younger Americans with permanent disabilities who are recipients of Social Security Disability Insurance. For a couple of years they qualify for Medicare as well and are a very important part in the Medicare population. Beyond that, Medicare’s covered population has not really changed all that much since the beginning, which actually would be a great disappointment to the architects of Medicare, who thought the program would expand to eventually cover everybody. 

In terms of benefits, the benefit package has been remarkably stable, for better and actually probably for worse, with the exception of, for example, the addition of outpatient prescription drug coverage, which came online in 2006, the addition of coverage for various preventive services such as mammography and cancer screenings. But Medicare still does not cover long-term stays in nursing homes. Many Americans think it does. They will be disappointed to find out it does not. Medicare does not cover, generally, hearing or vision or dental services. Traditional Medicare run by the government does not have a cap on the amount of money that beneficiaries can spend in a year on deductibles and copayments and so forth. So really its benefits remain quite limited. 

Rovner: So Medicare is also the biggest payer in the nation’s health care system and for decades set the standard in how private insurance covered and paid for health care. So let’s talk about privatization. Medicare Advantage, the private health plan alternative to traditional Medicare, is now more than half the program, both in terms of people and in terms of budget. Is this the future of Medicare? Or will we look back in many years and see it as kind of a temporary diversion? 

Oberlander: I think it’s the present and probably the future. The future is always so hard to predict, Julie, because it’s unwritten. But this is really a shocking outcome historically, because what Medicare’s architects expected was that the program was going to expand government health insurance to all Americans, first with the older population, then adding children, then adding everybody. Did not turn out that way. The original aspiration was Medicare for all, through any incremental means. Instead, 60 years later, we don’t have Medicare for all, but Medicare is mostly privatized. It’s a hybrid program with a public and private component that increasingly is dominated by private insurance. And the fact that over half of Medicare beneficiaries are enrolled in these private plans is a stunning development historically, by the way with lots of implications politically, because that’s an important new political force in Medicare that you have these large private plans and it’s changed Medicare politics. 

I don’t think Medicare Advantage is going anywhere. I think the question is, how big is it going to get? And I’m not sure any of us know. It’s been on a growth trajectory for a long time. And the question is — given that all the studies show that Medicare Advantage plans are overpaid, and overpaid by a lot, by the federal government, and it’s losing a lot of money on Medicare Advantage, and it’s never saved money — is there going to come a point where they actually clamp down? There’ve been some incremental efforts to try and restrain payments. Really haven’t had much effect. Are we actually going to get to a place where the federal government says: We need savings, yeah. This 22% extra that you’re getting, no, we can’t do that anymore. So I think it’s an open question about, how big is it going to get? Is it going to be two-thirds of the Medicare program, three-quarters of the Medicare program? And if so, then what is the future, turning the question on its head, of traditional Medicare if it’s that small? And that’s one of the great questions about Medicare in the next decade or two. 

Rovner: Thank you so much. 

Oberlander: Oh, thanks for having me. It was great to see you. 

Rovner: OK, we’re back. And now it’s time for our extra-credit segment. That’s where we each recognize a story we read this week we think you should read, too. Don’t worry if you miss it. We will put the links in our show notes on your phone or other mobile devices. Julie, why don’t you go first this week? 

Appleby: Yeah. I found this story on NPR quite interesting. It’s maybe something that a lot of us have thought about, but it just added a lot of numbers to the question of how many chemicals are in our beauty products — basically, the makeup we use, the lotions, our hairspray, the stuff that happens at the salon, that kind of thing. And it’s called “Many Beauty Products Have Toxic Ingredients. Newly Proposed Bills Could Change That.” And it was written by Rachel Treisman. Basically it says that the average American adult uses about 12 personal care products a day, resulting in exposure to about 168 chemicals, which can include things like formaldehyde, mercury, asbestos, etc., etc. OK, so that’s interesting. But it also talks about how the European Union has banned more than 2,000 chemicals, basically, but the FDA puts limits on only about a dozen. 

So this has caused four Democratic lawmakers to introduce a package of legislation, actually they’re calling the Safer Beauty Bill Package, and it’s four bills. And basically one of them would ban two entire classes of chemicals, phthalates and formaldehyde-releasing chemicals. And it also calls for some other things as well, which they say hasn’t been done and needs to be looked at. So I just thought it was an interesting thing that pulled together a lot of data from various sources and talked about this package of bills and whether or not it might make a difference in terms of looking at some of these chemicals in the products we use all the time and requiring a little bit more transparency about that. It’s a step. I don’t know if it’s going to resolve everybody’s concerns about this, but I just thought it was an interesting little piece looking at that topic. 

Rovner: It’s worth remembering that the FDA’s governing statute is actually called the Food, Drug, and Cosmetic Act. 

Appleby: That’s right. 

Rovner: The cosmetics often gets very short shrift in that whole thing. Alice, why don’t you go next? 

Ollstein: Yeah. So I have a piece from The Associated Press. It’s called “RFK Jr. Promoted a Food Company He Says Will Make Americans Healthy. Their Meals are Ultraprocessed.” And so this really gets at something we’ve been talking about on the podcast, where the administration is really fixated on a few kind of superficial food health things like colored dyes in food and frying something in beef tallow instead of vegetable oil. But something fried in beef tallow is still unhealthy. Froot Loops without the color dye are still unhealthy. And these meals that he is promoting as a service for Medicare and Medicaid enrollees are unhealthy. So this article is about how they do have chemical additives, they are high in sodium and sugar and saturated fats, and so it’s not in sort of keeping with the overall MAHA [Make America Healthy Again] message. But in a way it kind of is. 

Rovner: From the oops file. Jessie. 

Hellmann: My extra credit is from my colleague Ariel Cohen at Roll Call. It’s called “Kennedy’s Mental Health Drug Skepticism Lands at FDA Panel.” She did a story about something that kind of, I think, flew under the radar this week. The Trump administration is starting to make good on its promise to look at SSRIs [selective serotonin reuptake inhibitors], and the panel was very much full of skeptics of SSRIs who sought to undermine the confidence in using them while pregnant. And Marty Makary himself, FDA commissioner, claimed it could cause birth defects and other fetal harm. That was a statement that was echoed by many of the panelists. There was only one panelist who talked about the benefits of SSRIs in pregnant people who need them, the risks of postpartum depression to both the mom and the baby. And so I think this is definitely something to keep an eye on, is it looks like they’re going to keep looking more at this and raising questions about SSRIs without having much of a nuanced conversation about it. 

Rovner: Yeah. I did see something from ACOG, from the American College of Obstetricians and Gynecologists, this week pushing back very hard on the anti-SSRI-during-pregnancy push. So we’ll see how that one goes, too. My extra credit this week is from my KFF Health News colleague Katheryn Houghton, and it’s called “Republicans Call Medicaid Rife With Fraudsters. This Man Sees No Choice but To Break the Rules.” And it’s about something that didn’t really come up during the whole Medicaid debate, the fact that if Republicans really want people to go to work, well, then maybe they shouldn’t take away their health insurance if they get a small raise or a few extra hours. The subject of this story, only identified as James, technically makes about $50 a week too much to stay on Medicaid, but he otherwise can’t afford his six prescription medications and he can’t afford the care that he needs through even a subsidized Affordable Care Act plan, or his employer’s plan, either. 

The point of the ACA was to make coverage seamless so that as you earn more, you can still afford coverage even if you’re not on Medicaid anymore. But obviously that isn’t happening for everyone. Quoting from the story: “‘I don’t want to be a fraud. I don’t want to die,’ James said. ‘Those shouldn’t be the only two options.’” Yet for a lot of people they are. It’s not great, and it’s not something that’s currently being addressed by policymakers. 

OK. That is this week’s show. Thanks as always to our editor, Emmarie Huetteman, and our producer-engineer, Francis Ying. If you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review. That helps other people find us, too. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can find me still on X, @jrovner, or on Bluesky, @julierovner. Where are you folks hanging on social media these days? Jessie? 

Hellmann: I’m @jessiehellmann on Twitter and Bluesky. 

Rovner: Alice. 

Ollstein: @AliceOllstein on X and @alicemiranda on Bluesky. 

Rovner: Julie. 

Appleby: @julie_appleby on X. 

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

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President Donald Trump signed legislation that mandates some Medicaid recipients prove they’re working, volunteering, or completing other qualifying activities at least 80 hours a month to maintain coverage. This applies to 40 states (plus Washington, D.C.) that have expanded Medicaid to a broader pool of low-income adults. Those states will share $200 million to prepare eligibility systems by the end of next year.

KFF Health News’ Renuka Rayasam breaks down what you need to know about Medicaid work requirements.

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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MISSOULA, Mont. — As congressional Republicans finalized Medicaid work requirements in President Donald Trump’s budget bill, one man who relies on that government-subsidized health coverage was trying to coax his old car to start after an eight-hour shift making sandwiches.

James asked that only his middle name be used to tell his story so that he wouldn’t lose health coverage or be accused of Medicaid fraud. He found his food service gig a few weeks into an addiction treatment program. The man in his late 30s said his boss “hasn’t been disappointed.”

“I’m a good worker,” he said with a grin.

James can get the prescription drugs that help him stabilize his life and hold down that job through Medicaid, the state-federal insurance program that covers people with low incomes or disabilities. Those drugs curb his desire for alcohol and treat long-standing conditions that exacerbate his addiction, including bipolar and insomnia disorders.

But he hasn’t qualified for the program in months, ever since his work hours increased and he received a raise of about $1 an hour. He exceeds his income eligibility limit of about $21,000 per year by roughly $50 a week.

James said that despite his raise, he’s struggling to cover routine expenses, such as keeping his car running and paying his phone bill. He said he can’t afford the care he needs even on the cheapest insurance plan available to him through the Affordable Care Act’s marketplace or through his job’s health insurance plan. Even paying $60 a month for his sleep medications — one of six prescriptions he takes daily — is too expensive.

“I only saw one option,” James said. “Fudge the numbers.”

James hasn’t reported his new income to the state. That puts him at odds with congressional Republicans who justified adding hurdles to Medicaid by claiming the system is rife with waste, fraud, and abuse. But James isn’t someone sitting on his couch playing video games, the type of person House Speaker Mike Johnson and other people said they would target as they sought work requirements.

Medicaid provides health coverage and long-term care to more than 70 million people in the United States. Those who study safety-net systems say it’s extremely rare for enrollees to commit fraud to tap into that coverage. In fact, research shows swaths of eligible people aren’t enrolled in Medicaid, likely because the system is so confusing. And nearly two-thirds of people on Medicaid in 2023 had jobs, according to an analysis by KFF, a health information nonprofit that includes KFF Health News.

Those transitioning off Medicaid may qualify for other subsidized or low-priced health plans through the Affordable Care Act’s marketplace. But, as in James’ case, such plans can have gaps in what care is covered, and more comprehensive private plans may be too expensive. So James and an unknown number of other people find themselves caught between working too much to qualify for Medicaid but earning too little to pay for their own health care.

James considers himself to be a patriot and said that people shouldn’t “use government funding to just be lazy.” He agrees with the Republican argument that, if able, people should work if they receive Medicaid. Hiding his hours on the job from the government bothers him, especially since he feels he must lie to access the medical care that enables him to work.

“I don’t want to be a fraud. I don’t want to die,” James said. “Those shouldn’t be the only two options.”

On July 4, Trump signed into law the major tax and spending bill that makes it harder for low-income workers to get Medicaid. That includes requiring beneficiaries to work or go to school and adding paperwork to prove every six months they meet a minimum number of hours on the job.

“It’s going to hurt people, whether they’re playing by the rules or not,” said Ben Sommers, a health economist at Harvard University. “We see this vilification of mostly very hard-working people who are really struggling and are benefiting from a program that helps them stay alive.”

James said he initially declined his raise because he worried about losing Medicaid. He had previously been kicked off the coverage about a month into his rehab program after finding work. To stay in the sober-living program he otherwise couldn’t afford, James said, he dropped just enough hours at work to requalify for Medicaid and then soon picked up hours again. If he didn’t earn more, he said, he had no chance of saving enough money to find housing after graduating from the treatment program.

“They’ll give you a bone if you stay in the mud,” James said. “But you have to stay there.”

That problem — becoming just successful enough to suddenly lose Medicaid — is common. It’s called a benefit cliff, said Pamela Herd, who researches government aid at the University of Michigan.

“It just doesn’t make any sense that someone gets a dollar pay raise and all of a sudden they lose all access to their health insurance,” Herd said.

She said a partial fix exists called continuous eligibility, which guarantees an individual’s Medicaid coverage for a specific period, such as a year or longer. The goal is to give people time to adjust when they do earn more money. Continuous eligibility also helps maintain coverage for low-income workers with unpredictable hours and whose pay changes month to month.

But Congress has moved in the other direction. Under the new law, policymakers limited windows of eligibility for able-bodied adults to every six months. That will put more people on the program’s eligibility cliff, Herd said, in which they must decide between losing access to coverage or dropping hours at work.

“It is going to be a nightmare,” Herd said.

Those federal changes will be especially difficult for people with chronic conditions, such as James in Montana.

Not that long ago, James wouldn’t have been breaking the rules to access Medicaid because his state had 12-month continuous eligibility. But in 2023, Montana began requiring enrollees to report any change in their income within 10 days.

James is proud of how far he’s come. About a year ago, his body was breaking down. He couldn’t hold a spoon to eat breakfast without whiskey — his hands shook too hard. He had alcohol-induced seizures. He said his memories from his unhealthiest times come in flashes: being put on a stretcher, the face of a worried landlord, ambulance lights in the background.

James recently graduated from his treatment program. He’s staying with a relative to save money as he and his girlfriend try to find an affordable place to rent — though even with Medicaid, finding housing feels like a stretch to him. He’s taking classes part-time to become a licensed addiction counselor. His dream is to help others survive addiction, and he also sees that career as a way out of poverty.

To James, all his progress rides on keeping Medicaid a bit longer.

“Every time I get a piece of mail, I am terrified that I’m gonna open it up and it’s gonna say I don’t have Medicaid anymore,” he said. “I’m constantly in fear that it’s gonna go away.”

As of mid-July, officials hadn’t noticed the extra $50 he makes each week.

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

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When Lawrence and Penny Higgins of Fairfield, Maine, first learned in 2020 that high levels of toxic chemicals called PFAS taint their home’s well water, they wondered how their health might suffer. They had consumed the water for decades, given it to their pets and farm animals, and used it to irrigate their vegetable garden and fruit trees.

“We wanted to find out just what it’s going to do to us,” Penny Higgins said. They contacted a couple of doctors, but “we were met with a brick wall. Nobody knew anything.”

Worse still, she added, they “really didn’t want to hear about it.”

Many clinicians remain unaware of the health risks linked to PFAS, short for perfluoroalkyl and polyfluoroalkyl substances, despite rising medical and public awareness of the chemicals and their toxicity. PFAS can affect nearly every organ system and linger in bodies for decades, raising risks of cancer, immune deficiencies, and pregnancy complications.

These “forever chemicals” have been widely used since the 1950s in products including cosmetics, cookware, clothing, carpeting, food packaging, and firefighting foam. Researchers say they permeate water systems and soils nationwide, with a federal study estimating that at least 45% of U.S. tap water is contaminated. PFAS can be detected in the blood of nearly all Americans, according to the Centers for Disease Control and Prevention.

Maine was among the first states to begin extensive water and soil testing and to try to limit further public exposure to PFAS through policy action, after discovering that farms and residences — like the Higgins’ property — had been contaminated by land-spreading of wastewater sludge containing PFAS. Exposure can also be high for people living near military bases, fire training areas, landfills, or manufacturing facilities.

In regions where testing reveals PFAS hot spots, medical providers can be caught flat-footed and patients left adrift.

Rachel Criswell, a family practice doctor and environmental health researcher, is working to change that. She was completing her residency in Central Maine around the time that the Higginses and others there began discovering the extent of the contamination. Her medical training at Columbia University included more than a year in Norway researching the effects of PFAS and other chemicals on maternal and infant health.

When patients began asking about PFAS, Criswell and the state toxicologist offered primary care providers lunchtime presentations on how to respond. Since then, she has fielded frequent PFAS questions from doctors and patients throughout the state.

Even knowledgeable providers can find it challenging to stay current given rapidly evolving scientific information and few established protocols. “The work I do is exhausting and time-consuming and sometimes frustrating,” Criswell said, “but it’s exactly what I should be doing.”

Phil Brown, a Northeastern University sociology professor and a co-director of the PFAS Project Lab, said the medical community “doesn’t know a lot about occupational and environmental health,” adding that “it’s a very minimal part of the medical school curriculum” and continuing education.

Courtney Carignan, an environmental epidemiologist at Michigan State University, said learning of PFAS exposure, whether from their drinking water or occupational sources, “is a sensitive and upsetting situation for people” and “it’s helpful if their doctors can take it seriously.”

Clinical guidance concerning PFAS improved after the National Academies of Sciences, Engineering, and Medicine released a report on PFAS in 2022. It found strong evidence associating PFAS with kidney cancer, high cholesterol, reduced birth weights, and lower antibody responses to vaccines, and some evidence linking PFAS to breast and testicular cancer, ulcerative colitis, thyroid and liver dysfunction, and pregnancy-induced hypertension.

That guidance “revolutionized my practice,” Criswell said. “Instead of being this hand-wavey thing where we don’t know how to apply the research, it brought a degree of concreteness to PFAS exposure that was kind of missing before.”

The national academies affirmed what Criswell had already been recommending: Doctors should order blood tests for patients with known PFAS exposures.

Testing for PFAS in blood — and for related medical conditions if needed — can help ease patients’ anxiety.

“There isn’t a day that goes by,” Lawrence Higgins said, “that we don’t think and wonder when our bodies are going to shut down on us.”

‘Devastating but Incredibly Helpful’

After finding out in 2021 that his family was exposed to PFAS through sludge spread on their Unity, Maine, farm decades earlier, Adam Nordell discovered that “it was exceedingly difficult” to get tested. “Our family doctor had not heard of PFAS and didn’t know what the test was,” he said. A lab technician needed coaching from an outside expert to source the test. The lab analyzing the samples had a backlog that left the family waiting three months.

“The results were devastating but incredibly helpful,” Nordell said. Their blood serum levels for PFAS were at roughly the 99th percentile nationally, far higher than their well-water levels would have predicted — indicating that additional exposure was probably coming from other sources such as soil contact, dust, and food.

Blood levels of PFAS between 2 and 20 nanograms per milliliter may be problematic, the national academies reported. In highly contaminated settings, blood levels can run upward of 150 times the 20-ng/mL risk threshold.

Nordell and his family had been planning to remain on the farm and grow crops less affected by PFAS, but the test results persuaded them to leave. “Knowledge is power,” Nordell said, and having the blood data “gave us agency.”

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The national academies’ guidance paved the way for more clinicians to order PFAS blood tests. The cost, typically $400 to $600, can be prohibitive if not picked up by insurance, and not all insurers cover the testing. Deductibles and copays can also limit patients’ capacity to get tested. Less costly finger-prick tests, administered at home, appear to capture some of the more commonly found PFAS as accurately as blood serum tests, Carignan and colleagues found.

Maine legislators recently passed, with overwhelming support, a bill — modeled after one in New Hampshire — that would require insurers to consider PFAS blood testing part of preventive care, but it was carried over to the next legislative session.

“In my mind, it’s a no-brainer that the PFAS blood serum test should be universally offered — at no cost to the patient,” said Nordell, who now works as a campaign manager for the nonprofit Defend Our Health. Early screening for the diseases associated with PFAS, he said, is “a humane policy that’s in the best interests of everyone involved” — patients, providers, and insurance companies.

Criswell tells colleagues in family practice that they can view elevated PFAS blood levels as a risk factor, akin to smoking. “What’s challenging as a primary care doctor is the nitty-gritty” of the testing and screening logistics, she said.

In trainings, she shares a handout summarizing the national academies’ guidance — including associated heath conditions, blood testing, clinical follow-up, and exposure reduction — to which she has added details about lab test order codes, insurance costs and coverage, and water filtration.

Criswell served on an advisory committee tasked with allocating $60 million in state funds to address PFAS contamination from past sludge-spreading in Maine. The group recommended that labs analyzing PFAS blood tests should report the results to state public health authorities.

That change, slated to take effect this summer, will allow Maine health officials to follow up with people who have high PFAS blood levels to better determine potential sources and to share information on health risks and medical screening. As with many earlier PFAS policies, Maine is among the first states to adopt this measure.

Screening for PFAS is falling short in many places nationwide, said Kyle Horton, an internist in Wilmington, North Carolina, and founder of the nonprofit On Your Side Health. She estimates that only about 1 in 100 people facing high PFAS exposure are getting adequate medical guidance.

Even in her highly contaminated community, “I’m not aware of anyone who is routinely screening or discussing PFAS mitigation with their patients,” Horton said. Knowledge of local PFAS threats, she added, “hasn’t translated over to folks managing patients differently or trying to get through to that next phase of medical monitoring.”

Patients as Advocates

In heavily affected communities — including in Michigan, Maine, and Massachusetts — patients are pushing the medical field to better understand PFAS.

More doctors are speaking out as well. Testifying before a Maine legislative committee this year in support of a bill that would limit occupational PFAS exposure, Criswell said, “We, as physicians, who are sworn to protect the health of our patients, must pay attention to the underlying causes of the illnesses we treat and stand up for policy solutions that reduce these causes.”

Even where policy changes are instituted, the physical and psychological toll of “forever chemicals” will extend far into the future. Criswell and other Maine doctors have observed chronic stress among patients.

Nordell, the former farmer, described his family’s contamination as “deeply, deeply jarring,” an ordeal that has at times left him “unmoored from a sense of security.”

To assess the mental health consequences of PFAS exposure in rural residents, Criswell and Abby Fleisch, a pediatric endocrinologist at the MaineHealth Institute for Research, teamed up on a study. In its first phase, winding up this summer, they collected blood samples and detailed lifestyle information from 147 people.

Nordell, the Higginses, and other Central Maine residents sit on an advisory board for the study, a step Criswell said was critical to ensuring that their research helps those most affected by PFAS.

“The urgency from the community is really needed,” she said. “I don’t think I would be as fired up if my patients weren’t such good advocates.”

Criswell has faced what she calls “cognitive dissonance,” caught between the deliberate pace of peer-reviewed medical research and the immediate needs of patients eager to lower their PFAS body burden. Initially she considered inviting residents to participate in a clinical trial to test therapies that are considered safe and may help reduce PFAS levels in the body, such as high-fiber diets and a drug designed to reduce cholesterol called cholestyramine. But the clinical trial process could take years.

Criswell and Fleisch are instead planning to produce a case series on PFAS blood-level changes in patients taking cholestyramine. “We can validate the research results and share those,” Criswell said, potentially helping other patients.

Alan Ducatman, an internist and occupational physician who helped design the largest PFAS cohort study to date, said providers should convey that “there is no risk-benefit analysis” for any of the current treatments, although they’re generally well known and low-risk.

“Some people want to be treated, and they should be allowed to be treated,” he said, because knowing they have high PFAS levels in their bodies “preys on them.”

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“Almost 5 million able-bodied Medicaid recipients ‘simply choose not to work’ and ‘spend six hours a day socializing and watching television.’”

Scott Jennings on “CNN NewsNight with Abby Phillip” on July 1

Republicans defended the GOP megabill’s Medicaid changes as targeting a group of people they believe shouldn’t qualify: people who can work but instead choose to stay home and chill.

Several Republican politicians and pundits, including CNN senior political commentator Scott Jennings, pegged that group’s size at about 5 million people.

“There are like almost 5 million able-bodied people on Medicaid who simply choose not to work,” Jennings said July 1 on “CNN NewsNight with Abby Phillip.” “They spend six hours a day socializing and watching television. And if you can’t get off grandma’s couch and work, I don’t want to pay for your welfare.”

Centers for Medicare & Medicaid Services Administrator Mehmet Oz picked up on some of these points during a July 14 appearance on Fox News. “When the program was created 60 years ago, it never dawned on anyone that you would take able-bodied individuals who could work and put them on Medicaid. Today the average able-bodied person on Medicaid who doesn’t work, they watch 6.1 hours of television or just hang out,” Oz said.

Medicaid is a federal-state health insurance program that covers medical care for lower-income people.

Jennings cited two pieces of data: an estimate of how many fewer people would have coverage because of the work requirement and an analysis of how nonworking Medicaid recipients spend their time. But he made assumptions that the data doesn’t support.

Jennings Misrepresents CBO Estimate

The 4.8 million figure stems from a June 24 Congressional Budget Office analysis of a preliminary House version of the massive tax and spending package. The office, Congress’ nonpartisan research arm, projected that provisions of the bill would cause 7.8 million fewer people to have health coverage by 2034. They would include 4.8 million people previously eligible for Medicaid described as “able-bodied” adults 19 to 64 years old who have no dependents and who “do not meet the community engagement requirement” of doing “work-related activities” at least 80 hours a month.

Apart from working, doing community service and attending school also fulfill the community engagement requirement.

Jennings paired that statistic with a separate analysis of how nondisabled adult Medicaid recipients without dependent children spend their time.

But the CBO estimate was a projection — it doesn’t represent the current number of nondisabled Medicaid recipients, nor does it say 4.8 million people in this group “choose not to work.” The figure represented how many fewer people would have coverage because of the bill’s community engagement requirement.

“The challenge with Jennings’ comments — and they’ve been echoed elsewhere by elected Republicans — is that CBO never said that 4.8 million people were out of compliance with the proposed work requirements; they said that 4.8 million people would lose coverage because of the work requirements,” said Adrianna McIntyre, an assistant professor of health policy and politics at the Harvard T.H. Chan School of Public Health.

Among the Medicaid expansion population, the law requires most adults without dependent children and parents of children older than 13 to work or participate in other qualifying activities 80 hours every month. States will need to verify that applicants met the work requirement for one to three months before they applied. States will also be required to verify that existing enrollees met the work requirement for at least a month between eligibility determinations, which will be required at least twice a year.

Research into Medicaid work requirements imposed at the state level has shown that people found it difficult to fulfill them and submit documentation, contributing to coverage losses.

In Arkansas, which added a work requirement to Medicaid in 2018, a study based on nearly 6,000 respondents found that about 95% of the target population were already working or qualified for an exemption, but a third of them did not hear about the work requirements. As a result, nearly 17,000 Medicaid recipients subject to work requirements lost coverage.

KFF found that adults ages 50 to 64 are more at risk of losing Medicaid coverage because of the new work requirements. More than 1 in 10 in that age group said they had retired, and among them, 28% reported being disabled, said KFF, a health information nonprofit that includes KFF Health News.

Benjamin Sommers, a health care economics professor at the Harvard Chan school, said many of the 4.8 million “able-bodied” people in the CBO estimate “will actually be engaged in the activities they are supposed to be doing, and lose coverage because they are not able to navigate the reporting requirements with the state and lose coverage from red tape.”

When Recipients Don’t Work, It’s Rarely From Lack of Interest

There is no universal definition for “able-bodied”; disability can be assessed in different ways. But other studies offer much smaller estimates than 4.8 million Medicaid recipients without dependents who can work but choose not to.

Millions of working-age, nondisabled adults joined the Medicaid ranks in states that expanded eligibility under the Affordable Care Act. There were about 34 million working-age nondisabled Medicaid enrollees in 2024, according to the CBO, 15 million of whom enrolled through the ACA.

A KFF analysis found a smaller figure of 26 million Medicaid-covered adults, ages 19 to 64, who don’t receive Supplemental Security Income, Social Security Disability Insurance, or Medicare benefits.

Among this group, KFF estimated, 64% were working either full time or part time. The reasons the rest were not working included caregiving (12%); illness or disability (10%); retirement, inability to find work, or other reason (8%); and school attendance (7%).

Few people cited lack of interest in working as the reason for their unemployment. An Urban Institute study found 2% of Medicaid expansion enrollees without dependents who neither worked nor attended school — or 300,000 people out of a projected 15 million subject to work requirements — cited a lack of interest in working as the reason they were unemployed.

This was consistent with the Brookings Institution’s June 5 analysis that found that, of 4.3 million adult enrollees who worked fewer than 80 hours a month and did not have any activity limitations or illnesses, about 300,000 reported that they “did not work because they did not want to.”

Mostly Women, Mostly With a High School Degree or Less

When Republicans have described nondisabled adult Medicaid recipients, they have often portrayed them as men in their 30s “playing video games” in their parents’ basement or who “smoke weed all day.” Research paints a different picture.

Jane Tavares and Marc Cohen, of the University of Massachusetts-Boston Gerontology Department, researched Medicaid recipients who are not disabled or working, have no dependent children under 18, and are not in school. They cited 2023 census data from the American Community Survey.

They found:

• The average age of this population is 41, and 26% are older than 50.
• Almost 80% are female.
• Most, 80%, have a high school education or less.
• Their median individual income is $0, and their median household income is $44,800.
• About 56% worked in the past five years, and 23% worked in the prior year. About 30% are looking or available for work.

“They are not healthy young adults just hanging out,” the authors, along with health law experts Sara Rosenbaum and Alison Barkoff, wrote April 30.

“It’s clear based on their prior work history and family size/income that they are exceptionally poor and have likely left the workforce to care for adult children or older adults,” Tavares told PolitiFact. “Even if these individuals could work, they would have very few job opportunities and it would come at the cost of the people they are providing care for.”

AEI Study Not Definitively Linked to CBO Estimate

On the social platform X, Jennings posted the CBO letter and a May 29 analysis by the American Enterprise Institute, a conservative think tank, about “how nondisabled Medicaid recipients without children spend their time.” PolitiFact contacted CNN to reach Jennings but did not receive a reply.

The author of that study, American Enterprise Institute senior fellow Kevin Corinth, analyzed survey data and found that Medicaid recipients who do not report working spend on average 6.1 hours a day “on all socializing, relaxing and leisure activities (including television and video games).”

But it’s uncertain whether the people in the survey population he analyzed overlap with the people included in the CBO analysis, said Jennifer Tolbert, deputy director of KFF’s Program on Medicaid and the Uninsured.

Corinth told PolitiFact “it is difficult to say” how the population he analyzed differs from the CBO’s. Tavares, Cohen, Rosenbaum, and Barkoff said Corinth’s dataset defined disability narrowly, leading to a “serious underestimation of disability” among the population of Medicaid recipients he looked into. It focused on Medicaid recipients who receive Supplemental Security Income or have a health condition that prevents them from working. The researchers said this approach is too narrow because the SSI program accounts for only those “most deeply impoverished adults with severe disabilities.”

The group gave a hypothetical example of a 54-year-old woman with a serious heart condition who can work only a few hours a week. She may not be considered disabled under the SSI program, but she may be limited in the work she can do and may need time to rest.

“Using her ‘leisure time’ to justify a work requirement grossly misrepresents her reality,” the group wrote.

Corinth’s analysis also shows that nonworking Medicaid recipients spend less time socializing, relaxing, or engaged in leisure activities than nonworking people who aren’t covered by Medicaid. Nonworking Medicaid recipients also spend more time looking for work and doing housework and errands, it found.

Our Ruling

Jennings said almost 5 million nondisabled Medicaid recipients “simply choose not to work” and “spend six hours a day socializing and watching television.”

The 5 million figure stems from a CBO projection that 4.8 million people would go without coverage by 2034 as a result of not fulfilling the community engagement requirements. It is not descriptive of current enrollees and does not specify that these people choose not to work.

Jennings cited an American Enterprise Institute analysis on how nondisabled Medicaid recipients with no dependents spend their time, but it is uncertain if the population in that analysis overlaps with that in the CBO estimate.

Current snapshots of the population Jennings described produce a smaller number. A survey by the Urban Institute found that 2% of Medicaid expansion enrollees without dependents who were neither working nor attending school — about 300,000 people — cited a lack of interest in working. Other research has found reasons this group doesn’t work include caregiving, illness or disability, retirement, and inability to find work.

Studies of nonworking Medicaid recipients have found the majority are women and have a high school education or less. Their average age is 41, and more than half have a work history in the past five years.

We rate Jennings’ statement False.

Our Sources

Email interview, Jane Tavares, University of Massachusetts-Boston adjunct instructor in gerontology, July 2, 2025

Email interview, Marc Cohen, University of Massachusetts-Boston professor of gerontology, July 2, 2025

Email interview, Sara Rosenbaum, George Washington University Milken Institute School of Public Health professor emerita of health law and policy, July 2, 2025

Email interview, Alison Barkoff, George Washington University Milken Institute School of Public Health associate professor of health law and policy, July 2, 2025

Email interview, Edwin Park, Georgetown University McCourt School of Public Policy Center for Children and Families research professor, July 2, 2025

Email interview, Benjamin Sommers, Harvard T.H. Chan School of Public Health professor of health care economics, July 2, 2025

Phone interview, Jennifer Tolbert, deputy director of KFF’s Program on Medicaid and the Uninsured, July 2, 2025

Email interview, Adrianna McIntyre, Harvard T.H. Chan School of Public Health assistant professor of health policy and politics, July 2, 2025

Phone interview, Michael Karpman, Urban Institute Health Policy Division principal research associate, July 3, 2025

Email exchange, Congressional Budget Office spokesperson, July 2, 2025

Email interview, Kevin Corinth, American Enterprise Institute senior fellow, July 3, 2025

X post by Rapid Response 47, June 30, 2025

Transcript of “CNN NewsNight with Abby Phillip,” July 1, 2025

Congressional Budget Office, “Re: Information Concerning Medicaid-Related Provisions in Title IV of H.R. 1,” June 24, 2025

Benjamin D. Sommers, M.D., Ph.D., Anna L. Goldman, M.D., M.P.A., M.P.H., Robert J. Blendon, Sc.D., E. John Orav, Ph.D., and Arnold M. Epstein, M.D., “Medicaid Work Requirements — Results From the First Year in Arkansas,” June 19, 2019

Congressional Budget Office, Baseline Projections, Medicaid, June 2024

KFF, “Understanding the Intersection of Medicaid and Work: An Update,” May 30, 2025

Urban Institute, “Many Working People Would Be Shut Out of Medicaid Under Proposed Work Requirements,” June 11, 2025

Wisconsin Watch, “Have Millions of Nondisabled, Working-Age Adults Been Added to Medicaid?” July 2, 2025

CBS News, “Too Sick To Work, Some Americans Worry Trump’s Bill Will Strip Their Health Insurance,” June 26, 2025

Brookings Institution, “Any Way You Look at It You Lose: Medicaid Work Requirements Will Either Fall Short of Anticipating Savings or Harm Vulnerable Beneficiaries,” June 5, 2025

X post by Scott Jennings, July 2, 2025

American Enterprise Institute, “How Nondisabled Medicaid Recipients Without Children Spend Their Time,” May 29, 2025

Congressional Budget Office, “Estimated Budgetary Effects of an Amendment in the Nature of a Substitute to H.R. 1, the One Big Beautiful Bill Act, Relative to CBO’s January 2025 Baseline,” June 29, 2025

Geiger Gibson Program in Community Health, George Washington University Milken Institute School of Public Health, “The Fundamental Flaw in ‘How Workers Spend Their Time’,” June 4, 2025

X post by Aaron Rupar, July 1, 2025

X post by Congressman Brandon Gill, July 2, 2025

LeadingAge LTSS Center @UMass Boston, “Profile of Medicaid Population Age 18-64, Working and Non-Working Medicaid Beneficiaries, and ‘Able-Bodied’ Non-Working Medicaid Beneficiaries,” May 2025

The Milbank Quarterly, “Who’s Affected by Medicaid Work Requirements? It’s Not Who You Think,” April 30, 2025

KFF, “Different Data Source, but Same Results: Most Adults Subject to Medicaid Work Requirements Are Working or Face Barriers to Work,” June 25, 2025

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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Every time Ashton Alexander sees an ad for Georgia Pathways to Coverage, it feels like a “kick in the face.”

Alexander tried signing up for Pathways, the state’s limited Medicaid expansion, multiple times and got denied each time, he said, even though he met the qualifying terms because he’s a full-time student.

Georgia is one of 10 states that haven’t expanded Medicaid health coverage to a broader pool of low-income adults. Instead, it offers coverage to those who can prove they’re working or completing 80 hours a month of other qualifying activities, like going to school or volunteering. And it is the only state currently doing so.

“Why is this marketing out here?” said the 20-year-old, who lives in Conyers, east of Atlanta. “It’s truly not accessible.”

Each denial used the same boilerplate language, Alexander said, and his calls to caseworkers were not returned. State offices couldn’t connect him with caseworkers assigned to him from the same state agency. And when he requested contact information for a supervisor to appeal his denial, he said, the number rang to a fax machine.

“It’s impenetrable,” Alexander said. “I’ve literally tried everything, and there’s no way.”

Millions of Americans trying to access Medicaid benefits could soon find themselves navigating similar byzantine state systems and work rules. Legislation signed into law by President Donald Trump on July 4 allocates $200 million to help states that expanded Medicaid create systems by the end of next year to verify whether some enrollees are meeting the requirements.

Conservative lawmakers have long argued that public benefits should go only to those actively working to get off of government assistance. But the nation’s only Medicaid work requirement program shows they can be costly for states to run, frustrating for enrollees to navigate, and disruptive to other public benefit systems. Georgia’s budget for marketing is nearly as much as it has spent on health benefits. Meanwhile, most enrollees under age 65 are already working or have a barrier that prevents them from doing so.

What Georgia shows is “just how costly setting up these administrative systems of red tape can be,” said Joan Alker, executive director of Georgetown University’s Center for Children and Families.

Over the past two years, KFF Health News has documented the issues riddling Georgia’s Pathways program, launched in July 2023. More than 100,000 Georgians have applied to the program through March. Just over 8,000 were enrolled at the end of June, though about 300,000 would be eligible if the state fully expanded Medicaid under the terms of the Affordable Care Act.

The program has cost more than $100 million, with only $26 million spent on health benefits and more than $20 million allocated to marketing contracts, according to a KFF Health News analysis of state reports.

“That was truly a pretty shocking waste of taxpayer dollars,” Alker said.

The Government Accountability Office is investigating the costs of the program after a group of Democratic senators — including both members of the Georgia delegation — asked the government watchdog to look into the program. Findings are expected this fall.

A state report to the federal government from March said Georgia couldn’t effectively determine if applicants meet the qualifying activities criteria. The report also said the state hadn’t suspended anyone for failing to work, a key philosophical pillar of the program. Meanwhile, as of March, more than 5,000 people were waiting to have their eligibility verified for Pathways.

The Pathways program has strained Georgia’s eligibility system for other public benefits, such as food stamps and cash assistance.

In April, the state applied to the federal government to renew Pathways. In its application, officials scaled back key elements, such as the requirement that enrollees document work every month. Critics of the program also say the red tape doesn’t help enrollees find jobs.

“Georgia’s experience shows that administrative complexity is the primary outcome, not job readiness,” said Natalie Crawford, executive director of Georgia First, which advocates for fiscal responsibility and access to affordable health care.

Despite the struggles, Garrison Douglas, a spokesperson for Georgia’s Republican governor, Brian Kemp, defended the program. “Georgia Pathways is doing what it was designed to do: provide free healthcare coverage to low-income, able-bodied Georgians who are willing to engage in one of our many qualifying activities,” he said in an emailed statement.

New federal requirements in the tax and spending legislation mean that the 40 states (plus Washington, D.C.) that expanded Medicaid will need to prepare technology to process the documentation some Medicaid recipients will now have to regularly file.

The federal law includes exemptions for people with disabilities, in addiction treatment, or caring for kids under 14, among others.

The Trump administration said other states won’t face a bumpy rollout like Georgia’s.

“We are fully confident that technology already exists that could enable all parties involved to implement work and community engagement requirements,” said Mehmet Oz, head of the Centers for Medicare & Medicaid Services, in an emailed statement.

In a written public comment on Georgia’s application to extend the program, Yvonne Taylor of Austell detailed the difficulties she faced trying to enroll.

She said she tried to sign up several times but that her application was not accepted. “Not once, not twice,  but 3 times. With no response from customer service,” she wrote in February. “So now I am without coverage.”

Victoria Helmly of Marietta wrote in a January comment that she and her family members take care of their dad, but the state law doesn’t exempt caregivers of older adults.

“Georgia should recognize their sacrifices by supporting them with health insurance,” she wrote. “Let’s simplify this system and in the end, save money and lives.”

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

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Federal health officials do not inform consumers about severe safety violations in hospitals that specialize in physical rehabilitation. Nor does Medicare impose fines as it does for nursing homes, or provide easy-to-understand five-star ratings as it does for general hospitals, according to an investigation by KFF Health News and The New York Times. 

Medical rehab hospitals have become a highly lucrative niche within the health care industry, collectively generating profits of 10%, more than general hospitals, which earn about 6%, and far more than skilled nursing homes, which make less than 0.5%, according to the most recent data from the Medicare Payment Advisory Commission, an independent congressional agency known as MedPAC. 

But MedPAC and independent researchers have found that for-profit rehabs tend to have higher rates of patients being readmitted to general hospitals than nonprofits do. 

In 2023, stand-alone for-profit rehabilitation hospitals overtook nonprofits as the places where most annual patient admissions occur, a KFF Health News and New York Times analysis found. These facilities are required to provide three hours of physical, occupational, or speech therapy a day, five days a week. 

Congress has not authorized Medicare to fine rehab hospitals for violations uncovered during inspections, even ones that resulted in death, as it has done with nearly 8,000 nursing homes during the last three years, imposing average fines of about $28,000. 

The only option is to entirely cut off a rehab hospital’s reimbursement for all services by Medicare and Medicaid, which cover most patients. That step would most likely put it out of business and is almost never used. Even the most serious violations effectively carry no punishments so long as the hospital puts steps in place to avert future problems. 

The federal government’s overall quality oversight efforts are limited. Medicare docks payment to rehab facilities for patients readmitted to a general hospital during shorter-than-average rehab stays, but unlike at general hospitals, there are no financial penalties when recently discharged rehab patients are hospitalized for critical health issues. 

The Biden administration announced last year it intended to develop a rating scale of 1 to 5 stars for rehab facilities on its Care Compare website. The industry’s trade association, the American Medical Rehabilitation Providers Association, requested a delay in the creation of star ratings until the current quality measures were refined. The Trump administration has not determined whether it will continue the effort to rate rehab facilities. 

Also read our consumer guide to finding the right place to get physical, occupational or speech therapy.

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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Last year in Massachusetts, after finding lumps in her breast, Jessica Chen went to Lowell General Hospital-Saints Campus, part of Tufts Medicine, for a mammogram and sonogram. Before the screenings, she asked the hospital for the estimated patient responsibility for the bill using her insurance, Tufts Health Plan. Her portion, she was told, would be $359 — and she paid it. She was more than a little surprised weeks later to receive a bill asking her to pay an additional $1,677.51. “I was already trying to stomach $359, and this was many times higher,” Chen, a physician assistant, told me.

The No Surprises Act, which took effect in 2022, was rightly heralded as a landmark piece of legislation, which “protects people covered under group and individual health plans from receiving surprise medical bills,” according to the Centers for Medicare & Medicaid Services. And yet bills that take patients like Chen by surprise just keep coming.

With the help of her software-wise boyfriend, she found the complicated “machine-readable” master price list that hospitals are required to post online and looked up the negotiated rate between Lowell General and her insurer. It was $302.56 — less than she had paid out-of-pocket.

CMS is charged with enforcing the law, so Chen sent a complaint about the surprising bill to the agency. She received a terse email in return: “We have reviewed your complaint and have determined that the rights and protections of the No Surprises Act do not apply.”

When I asked the health system to explain how such a surprising off-estimate bill could be generated, Tufts Medicine spokesperson Jeremy Lechan responded by email: “Healthcare billing is complex and includes various factors and data points, so actual charges for care provided may differ from initial estimates. We understand the frustration these discrepancies can cause.”

Here’s the problem: While the No Surprises Act has been a phenomenal success in taking on some unfair practices in the wild West of medical billing, it was hardly a panacea.

In fact, the measure protected patients primarily from only one particularly egregious type of surprise bill that had become increasingly common before the law’s enactment: When patients unknowingly got out-of-network care at an in-network facility, or when they had no choice but to get out-of-network care in an emergency. In either case, before President Donald Trump signed the law late in his first term, patients could be hit with tens or hundreds of thousands of dollars in out-of-network bills that their insurance wouldn’t pay.

The No Surprises Act also provided some protection from above-estimate bills, but at the moment, the protection is only for uninsured and self-pay patients, so it wouldn’t apply in Chen’s case since she was using health insurance.

But patients who do qualify generally are entitled to an up-front, good-faith estimate for treatment they schedule at least three business days in advance or if they request one. Patients can dispute a bill if it is more than $400 over the estimate. (The No Surprises Act also required what amounted to a good-faith estimate of out-of-pocket costs for patients with insurance, but that provision has not been implemented, since, nearly five years later, the government still has not issued rules about exactly what form it should take.)

So, surprising medical bills — bills that the patient could not have anticipated and never consented to — are still stunning countless Americans.

Jessica Robbins, who works in product development in Chicago, was certainly surprised when, out of the blue, she was recently billed $3,300 by Endeavor Health for a breast MRI she had received two years earlier, with prior authorization from her then-insurer, Blue Cross and Blue Shield of Illinois. In trying to resolve the problem, she found herself caught in a Kafkaesque circle involving dozens of calls and emails. The clinic where she had the procedure no longer existed, having been bought by Endeavor. And she no longer had Blue Cross.

“We are actively working with the patient and their insurer to resolve this matter,” Endeavor spokesperson Allie Burke said in an emailed response to my questions.

Mary Ann Bonita of Fresno, California, was starting school this year to become a nursing assistant when, on a Friday, she received a positive skin test for tuberculosis. Her school’s administration said she couldn’t return to class until she had a negative chest X-ray. When her doctor from Kaiser Permanente didn’t answer requests to order the test for several days, Bonita went to an emergency room and paid $595 up front for the X-ray, which showed no TB. So she and her husband were surprised to receive another bill, for $1,039, a month later, “with no explanation of what it was for,” said Joel Pickford, Bonita’s husband.

In the cases above, each patient questioned an expensive, unexpected medical charge that came as a shock — only to find that the No Surprises Act didn’t apply.

“There are many billing problems out there that are surprising but are not technically surprise bills,” Zack Cooper, an associate professor of economics at Yale University, told me. The No Surprises Act fixed a specific kind of charge, he said, “and that’s great. But, of course, we need to address others.”

Cooper’s research has found that before the No Surprises Act was passed, more than 25% of emergency room visits yielded a surprise out-of-network bill.

CMS’ official No Surprises Help Desk has received tens of thousands of complaints, which it investigates, said Catherine Howden, a CMS spokesperson. “While some billing practices, such as delayed bills, are not currently regulated” by the No Surprises Act, Howden said, complaint trends nonetheless help “inform potential areas for future improvements.” And they are needed.

Michelle Rodio, a teacher in Lakewood, Ohio, had a lingering cough weeks after a bout of pneumonia that required treatment with a course of antibiotics. She went to Cleveland Clinic’s Lakewood Family Health Center for an examination. Her X-ray was fine. As was her nasal swab — except for the stunning $2,700 bill it generated.

“I said, ‘This is a surprise bill!’” Rodio recalled telling the provider’s finance office. The agent said it was not.

“So I said, ‘Next time I’ll be sure to ask the doctor for an estimate when I get a nose swab.’”

“The doctors wouldn’t know that,” the agent replied, as Rodio recalled — and indeed physicians generally have no idea how much the tests they order will cost. And in any case, Rodio was not legally entitled to a binding estimate, since the part of the No Surprises Act that grants patients with insurance that right has not been implemented yet.

So she was stuck with a bill of $471 (the patient responsibility portion of the $2,700 charge) that she couldn’t have consented to (or rejected) in advance. It was surprising — shocking to her, even — but not a “surprise bill,” according to the current law. But shouldn’t it be?

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

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In response to the high price of prescription drugs, “An Arm and a Leg” asked listeners to share their strategies for getting the medicine they need at prices they can manage.

Host Dan Weissmann and producers Emily Pisacreta and Claire Davenport share tips from a retired hospital manager who now helps seniors find the right Medicare plans, a pharmaceutical sales rep, an employee benefits adviser, and a battle-worn hospital caseworker. Each brings surprising, maybe even lifesaving, information to the table.

Explore the full crowdsourced series, including five installments of the “First Aid Kit” newsletter: The Prescription Drug Playbook.

Dan Weissmann @danweissmann Host and producer of "An Arm and a Leg." Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting. Credits Emily Pisacreta Producer Claire Davenport Producer Adam Raymonda Audio wizard Ellen Weiss Editor Click to open the Transcript Transcript: The Prescription Drug Playbook, Part II

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

Dan: Hey there. Let’s meet Jeanne Chamberlin from North Carolina. She regularly talks with folks who take like 15 different meds every day. 

Jeanne Chamberlin: You are like, oh my gosh. And literally the retail costs are $20,000 a month. 

Dan: Jeanne’s an expert, twice over. Since retiring from a career managing hospitals and medical groups, she’s been helping her fellow seniors figure out how to manage what they pay for health care — as a county-level volunteer coordinator for a program called SHIP. 

Jeanne: And SHIP stands for Seniors Health Insurance Information Program. 

Dan: Actually in some cases it stands for State Health Insurance Assistance Program. 

Whatever you wanna call it — It’s a federally funded program that helps seniors with all things Medicare. Every state has its own version of SHIP. 

During the busy season — that’s in the fall, when people can pick new insurance for the coming year– Jeanne says she and her team speak to more than a hundred people a week. 

And one thing that comes up in basically ALL of those conversations: Can I change things to get my meds for less next year? 

She says one year, her team added up the impact of those conversations. Half of the people changed plans, and on average, they saved 300 dollars. Not bad… 

Jeanne: But there were many, many people who saved a thousand, 2000, even $10,000 by changing from one Medicare plan to another based entirely on the cost of their drugs. 

Dan: Jeanne’s gonna tell us how she helps people get those kinds of savings– with strategies that aren’t just for people on Medicare. 

And Jeanne is just one person who wrote to us when we asked for you, our listeners, to tell us about your tactics and tricks for dealing with the high cost of prescription drugs.

The result: two podcast episodes– this is number two — and four installments of our First Aid Kit newsletter. 

In this episode, we’re gonna hear from Jeanne and three other *incredible* sources who came to us with crucial insider knowledge. Knowledge that — now they we have it– we have to share with you. 

Jeanne’s gonna help us get set up. She’s gonna share what she tells those seniors, and how it can apply to anyone, at any age. 

… Then, a pharma insider is gonna air an open secret. 

An employee benefits advisor — a kind of scout for deals — will tell us where she’d send someone struggling to pay for meds. 

Finally, we’ll meet a battle-worn hospital caseworker. And beyond the specific tip she wrote in with, her work – and life story – are gonna bring us some deeper perspective. 

These people kick ass. 

And for all their advice, there is, of course, a BIG caveat: 

like we said last episode — your mileage will vary. There is no one solution for everyone. This is a set of patches, workarounds, bandaids. 

To be honest, a lot of them are actually weird byproducts of the profit-making machine. Which is a big reason they’re so patchy and unreliable. 

We deserve SO much better. But in the meantime, we can help each other. That’s what this project is about. Including the four newsletter installments I mentioned. And we’ll link to those from wherever you’re listening — so: you don’t need a pencil and paper here. We’ve got you. 

Our hope is that you walk away from all of this armed with a *little* more knowledge that could help you or someone you care about get the meds they need. A kind of leg up. An Arm and a Leg-leg-up. 

This is An Arm and a Leg, a show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann– I’m a reporter, and I like a challenge. So the job we’ve chosen on this show is to take one of the

most enraging, terrifying, depressing parts of American life, and bring you something entertaining, empowering, and useful. 

So, first: Jeanne wrote to us about what she knows from helping people enroll in Medicare. But she also had an instructive personal story to share. Because even experts have to scramble sometimes. 

A while ago, when Jeanne’s husband had a gut infection, he got prescribed two antibiotics. His insurance coverage meant one was gonna cost him thirty bucks. But the other one? His plan didn’t cover it And… . 

Jeanne: It was $1,200. For a 14 day supply it was just obscenely expensive. 

Dan: So immediately, Jeanne says she went into problem solving mode. And her order of operations provides a great template for any of us. 

Step one: Google for discounts. Just taking a quick first pass at the kind of thing we talked about in our last episode. Maybe that’s GoodRx. Maybe that’s a coupon from the drug maker. Results for Jeanne: Not great. 

Jeanne: I could get it down to $800. It’s like, still, you’re like $800. Really? 

Dan: So, on to step two: Tell your provider there’s a problem and ask for advice. 

Jeanne: We went back to the doctor and said, is there something else that you know you can do? 

Dan: Jeanne was thinking: Maybe the doc could recommend another antibiotic — one that insurance would cover. Or help them fight her husband’s insurance to get this drug covered. 

But actually, the doc’s proposal was much simpler. 

Jeanne: She said just take the other one. 

Dan: Just take the one Jeanne’s husband could get for thirty bucks. Skip the second drug. 

Jeanne: So he did, and he was fine!

Dan: END OF STORY. In this case. It’s not always that easy. But the moral is: ASK. If your insurance covers a different drug, your doc can tell you if it’s a good bet for you. If not… well… we’ll come back to other ways your doc could help. 

But right now let’s move on to the biggest, most valuable advice Jeanne gives to seniors– and that applies to everybody. 

Especially anybody with meds they’re taking long term, like blood pressure or cholesterol meds, or whatever. 

And the advice is this: Look ahead, every year. 

In the fall, when it’s time to sign up for next year’s insurance plan: Get a look at the list of which drugs your insurance will cover, and how much they expect you to pay for them. It’s called the formulary. 

Because even if you don’t change anything about your insurance, your insurance could change the formulary. That can happen to anybody. 

Jeanne sees it all the time with seniors, when their plans reboot at New Year’s. 

Jeanne: People come in in January and this happens every year, and say, I just went to the pharmacy and. They want $300 for my medicine. And last year, or last month in December, it was $30. 

Dan: These folks didn’t plan to change anything about their insurance — but their insurance plan changed on them– and stopped covering a drug they’ve been taking. Now they’re getting charged sticker price. 

And Jeanne’s like, ‘Man, I wish you’d have come to see us during the fall sign-up– open enrollment.’ 

Jeanne: We could have probably found a plan that covered that drug still.. 

Dan: Now, it’s true that folks on Medicare tend to have more choices than the rest of us here. In Medicare, drug coverage is its own separate plan — called Part D — and seniors in Jeanne’s county have more than a dozen to pick from. 

If you get insurance from work — and maybe there’s just one plan — this thing of looking ahead is maybe even more important.

At some point, maybe a couple months before the new year, you should get a chance to see that next year’s formulary 

And it could say, “Hey, your drug is gonna be more expensive for you next year” 

That’s your cue to start problem-solving right away. Get a plan in place before that new price kicks in. 

Step one: Check: Can you find discounts online that make this drug affordable? Cool. 

No? Time to get in touch with your provider’s office: start tapping their expertise. 

Jeanne: The provider normally has a lot of people with your condition and probably prescribes this medication a lot. 

Dan: And so, if your insurance company says they’ve got some other drug you could take, one they’ll pay for– your provider will know: could that drug work for you? 

And if you’ve got a choice of plans — but they all require a special approval process now for your drug — your provider will know: Is one of them more likely to actually issue that approval? 

Jeanne: Ask them about a plan where they have an easy time getting it approved for somebody with your condition where it always goes through. 

Dan: And that’s the plan you want to pick. And, speaking of getting your insurance company’s approval: 

We’re about to move from Jeanne’s advice– plan ahead, get your provider to help — to the next step. Because you can’t plan everything. Sometimes you get sick, with something new. No planning for that. 

And sometimes, your insurance is definitely not gonna say yes right away to the drug your doc thinks you need. And your doc thinks you need this particular drug. So, how ELSE can your provider help?

John: I work, uh — work for an industry with an approval rating below Congress. 

Dan: He’s a pharmaceutical sales rep! He asked us to keep his full name and employer confidential. 

He’s also an Arm and a Leg fan. 

John: I love it when, uh, I hear stories of average people just sticking it to the insurance company. It’s nice when the patient wins, cause they don’t get a lot of wins. 

Dan: We reached John in his primary office — also known as his car. 

When we asked listeners a few months ago to share lessons about getting prescription meds without paying an arm and a leg, he wrote right in with tips. 

And one, I love just for the attitude. Here’s John reading from the email he sent us: 

John: Step therapies. Uh, denials and price at pharmacy should be viewed as suggestions. 

Dan: Suggestions. Perfect. The other is much more specific. As a salesman, a big part of John’s job is prepping doctors for the fights they’re gonna have with insurance companies, to get approvals for drugs. He does that because approvals for them mean sales for John. 

Of course, approvals take time. 

John: But one thing that you know doesn’t care about time is diseases. 

The disease of Crohn’s or Bipolar disorder, whatever, isn’t like, look, I’ll hold off on affecting you until this prior authorization is done. 

Dan: So here’s John’s advice: while you’re fighting for that approval– pushing back on the insurance company’s “suggestion” that you try something else– Ask your provider if they can get free samples from the pharma company — from a rep like him.

John: And the provider hopefully will say, yeah, let me call the rep and we’ll leave some at front for you. 

Dan: Actually, your provider may already have some on hand. A study from a few years ago found that TWO THIRDS of primary-care practices had CLOSETS of pharmaceutical samples. Which, wow. 

So, let’s address something big: Like John joked about as we introduced him, pharma sales reps are NOT generally looked upon as model citizens. 

The rap is: Some of them use less-than-scrupulous tactics to encourage doctors to prescribe expensive drugs… even to patients who might not get extra benefit from a specific drug. Or, in the case of opioids — which got pushed really hard — might cause harm. And free samples are part of that process. 

So, some providers won’t meet with sales reps at all. Some health systems don’t allow any of their staff to meet with them. 

But you don’t have to approve of how pharmaceutical companies do their business to take advantage of John’s suggestion. And neither does your doctor. 

John says, to get free samples, your doctor might not even need to talk to anyone. 

They can just make a request online, at the manufacturer’s website. John says it definitely happens. 

John: So even with providers or doctors that I’ve never seen in my nine years, I know that they’ve gotten samples before. 

Dan: But here too, there will be limits. 

John: Some manufacturers don’t even do samples. So it really varies a lot. Dan: But a lot of these samples do exist — 

And the idea of using them as a stopgap while you fight to get your insurance to pay for the meds you need — I had never thought of it until we asked you, our listeners, for your tips.

And you also sent us this: Could a local clinic supply the meds you need for a price you can actually afford? That’s next.. 

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

OK, a whole new kind of expert here. Like Jeanne, who we heard from earlier. Cristy Gupton also lives in North Carolina. She works as an independent employee benefits designer. You’re probably like, what the hell is that? Here’s how she describes her work. 

Cristy Gupton: Imagine you’re a kid in high school, in shop class, and your teacher puts an old engine on the table, and says, take it apart and put it back together again and make sure it works. 

Dan: Except, the machine is a health benefit program for workers. And– back to the shop-class metaphor — Cristy says she’s the real gear-head in the room . 

Cristy Gupton: By the time I put the engine back together, it works twice as good, but at half the cost. 

Dan: Cristy says she does it by ditching expensive, off-the-shelf parts — standard insurance policies from big companies — for custom solutions. It’s a WHOLE THING, and super-interesting, and worth going into. 

For now, she’s got one big tip that *some* of us could use to get access to meds at super-low prices. Basically it’s this: Look for a community health center that offers a sliding scale. They can get drugs at extremely low prices, through a federal program called 340B. 

How low? 

Cristy Gupton: The drug Humira is one of the most prescribed drugs in America. And the list price is probably somewhere in the neighborhood of 5,000 a month. But a 340B covered entity could purchase it for a penny. 

Dan: So we checked, and actually: Humira’s list price isn’t 5,000 dollars. It’s 7,000 dollars. But YES, a 340B clinic can get it for a penny. Now, they don’t get every drug that cheap, but..

And look: although this is all very much worth knowing about, it’s not guaranteed to work for you. 

340B is complicated in all kinds of ways. Here’s my colleague Emily Pisacreta asking Christy about it. 

Emily: Help me understand what 340B is. 

Cristy Gupton: I’ll give you my best, um, like only know enough to be dangerous answer. 

Dan: After checking some actual experts, here’s what we think you need to know: 

A federal law from the 1990s — section 340B of that law — basically requires drug-makers to give some hospitals and health centers that serve low-income folks super-duper discounts on meds. 

Those discounts don’t always get passed along to patients. The feds say hospitals and clinics can take a profit, to subsidize their other work . 

But the rules say: community health centers DO need to make drugs affordable to people with lower incomes. Specifically, to people who make less than two times the federal poverty level. 

For 2025, that’s just over 64 thousand dollars for a family of four. Not a lot. 

But it’s a lot of people: More than 28 percent of Americans qualify. And some clinics may have sliding scales for people with higher incomes than that. 

So: There’s a search tool. We’ve got a link wherever you’re listening to this. Find a clinic in your area, call them, and see what the deal is. 

One last thing to know: You’ve gotta actually be a patient at the clinic in order to use this program. And actually, if you meet the income requirements, all the clinic’s services are gonna be super-subidized. 

But if you don’t want to engage too deeply with the clinic– don’t want to switch over all your care to a new team — Cristy says, in her experience, you may not have to.

Cristy Gupton: It can be as loose as they just have a virtual visit. I mean, that’s pretty simple. 

Dan: Again, we’ve got a link to the search tool for finding a health center near you. Which of course…near you… not everybody is gonna have. Your mileage may vary, literally. But is it worth checking? Yeah, I think so. 

OK we’ve thrown a LOT at you. I know, I know. And we do have one more set of expert tips. From someone we are really glad to have met. So here’s Erika — and her expertise is part of a lifelong project. 

Erika: You know, as a child with Type one diabetes, I had a very dysfunctional household and I had to take care of myself from a very young age. I have learned that the skills that I developed as a child with a chronic illness are transferable into a career to help people be taken care of. 

Dan: So now, she works as a patient navigator– a kind of case worker, at a hospital in rural Oregon. 

When my colleague Emily talked with Erika, they bonded a little. 

Emily: I live with Type One Diabetes and I really wish that I had had a patient navigator, um, when I was diagnosed. 

Erika: Yeah, I wish I had me as a patient navigator too. 

Dan: Most of the patients Erika does work with are managing chronic conditions and other serious health problems, under tough circumstances. 

Erika: For example, let’s say a patient has an amputation and they’re told on discharge to keep it elevated and keep it clean. Well if they’re living in their car, that can be a challenge. So in that case, case management would try to find them a hotel for a couple weeks. 

Dan: And of course, one of the most common problems she tackles: helping people get their meds at prices they can afford. 

Erika: There are weeks where that’s all I’ll do.

Dan: For insured patients, Erika he starts with drugs-and-insurance 101: Helping them figure out which drugs their insurance covers, at what price to them, and coaching them before they call their insurance company. 

Erika:I offer to be on the call with them if they want. And I will tell you right now that we’re gonna be on hold with that insurance company for 30 minutes 

Dan: Yeah, that sounds familiar. Also, for some patients on Medicaid, Erika runs interference with bureaucracies. 

And, when there’s no way that insurance will make the right drugs affordable for her patients– including folks with no insurance at all– Erika helps them explore one of the options she wrote in to us about. 

“Patient Assistance Programs” based on income. Some are from manufacturers, others come from private foundations. 

Erika: It’s such a matter of somebody knowing who to ask and where to get the stuff. 

Dan: And there are websites to find this kind of thing — we’ve got links and guides for you — and she says the applications aren’t complicated. 

But the people she works with, they need extra help. 

Erika: A lot of my patients don’t even know how to use a computer or to get onto the internet, or they don’t have smart phones, they just have cell phones. So a lot of them, I meet with them. I take my laptop, and we do an online application. I help them fill it out. 

Dan: And then hope it works. Some programs only give out so much assistance per year, so not everybody gets help. 

Erika: It’s a frustrating fight. I feel bad that people have to wage this, you know, to get what they need to be healthy. It’s, it’s not like people are asking for BMW or new clothing. People are asking for, oftentimes medications they need to keep themselves alive. It’s, it’s like asking for oxygen. Like what if you were told you you couldn’t afford oxygen? That’s the way people feel sometimes.

Dan: And that’s why, even though Erika wrote to us about practical specifics, it’s her approach, her presence that we especially wanted to share with you. 

Erika: I advised all my patients to get a tattoo that says, be persistent. I mean, seriously, I don’t expect them to get tattoos. But as a patient who manages a chronic condition, you just have to be. 

Dan: Oh yeah. The ongoing burden of dealing with all this, it’s a bear. And it came up again and again when you wrote in to us. 

Erika: Yeah. Stress management, whew. 

Dan: For Erika’s patients, and for herself too. 

Erika: I have to remember to like, stop, step away, do some breathing. And these are things I teach to my patients a little bit too. Like, okay, let’s stop and do some breathing together on the phone. Okay. 

Dan: She calls her strategy “self compassion.” It’s about helping people see how much they’re already doing. 

Erika: I encourage people to take a moment and appreciate that about yourself. Okay? you’ve been on the phone with your insurance company for 30 minutes. 

You’re trying to get this done. You really need to appreciate that you’re doing that for your health. For your health. Feel good about that, at least. 

Dan: You are taking time to listen to this podcast. We are here, right now, together, doing our best. 

For the practical lessons — all the things to try, that may or may not work — we’ve done our best to write them down for you, and organize them so they’re useful, in our First Aid Kit newsletter. Four installments. 

You can find those newsletters — and these episodes — at Arm and a Leg show, dot com, slash, drugs. 

That’s the address where we first asked you to share what you’d learned by walking through this maze. Now we’re inviting you to come and see what we’ve learned from you.

Arm and a Leg show dot com, slash drugs. There’ll be a link wherever you’re listening to this. 

And you’ll find one more thing there, too. 

To honor the endless and ridiculous process that we sometimes have to go through to get our medicines… my colleague Claire Davenport, who has led the reporting for so much of this series, made an endless and ridiculous song. Well, with the help of an AI. Stay tuned after the credits for a little taste of that. 

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

Till next time, take care of yourself. 

This episode of An Arm and a Leg was produced by Emily Pisacreta and Claire Davenport with help from me, Dan Weissmann, and Lauren Gould. 

And edited by Ellen Weiss. 

Adam Raymonda is our audio wizard. 

Our music is by Dave Weiner and Blue Dot Sessions. 

Bea Bosco is our consulting director of operations. 

Lynne Johnson is our operations manager. 

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America — and a core program at KFF: an independent source of health policy research, polling, and journalism. 

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

An Arm and a Leg is Distributed by KUOW — Seattle’s NPR station. And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor. 

They allow us to accept tax-exempt donations. You can learn more about INN at INN.org.

Finally, thank you to everybody who supports this show financially. You can join in any time at Arm and a Leg show, dot com, slash: support. 

And NOW….a little treat. 

So: At one point, we were like, “What if we could make like a jingle to help people remember all the tactics we’re talking about?” 

But when our producer Claire tried actually writing one, with AI supplying the melody and the band — it just kinda showed us how endless and ridiculous the list actually is. 

And we found that just adorable. Here’s how it starts… 

AI Song: I am a prescription – medication. And as you might know, I’m Expensive in this nation. Getting me can be confusing. And often quite scary. Since when it comes to meds. The prices can vary. Luckily, there’s some tricks you can try. When you’re in this situation and the price is high… 

Dan: Alright, I think you get the idea — and if you want more, it’s all at Arm and a Leg show dot com, slash, drugs. Along with these podcast episodes and First Aid Kit newsletter installments, and everything we hope you’ll actually find useful. Thanks.

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

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

To hear all KFF Health News podcasts, click here.

And subscribe to “An Arm and a Leg” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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Shorter enrollment periods. More paperwork. Higher premiums. The sweeping tax and spending bill pushed by President Donald Trump includes provisions that would not only reshape people’s experience with the Affordable Care Act but, according to some policy analysts, also sharply undermine the gains in health insurance coverage associated with it.

The moves affect consumers and have particular resonance for the 19 states (plus Washington, D.C.) that run their own ACA exchanges.

Many of those states fear that the additional red tape — especially requirements that would end automatic reenrollment — would have an outsize impact on their policyholders. That’s because a greater percentage of people in those states use those rollovers versus shopping around each year, which is more commonly done by people in states that use the federal healthcare.gov marketplace.

“The federal marketplace always had a message of, ‘Come back in and shop,’ while the state-based markets, on average, have a message of, ‘Hey, here’s what you’re going to have next year, here’s what it will cost; if you like it, you don’t have to do anything,’” said Ellen Montz, who oversaw the federal ACA marketplace under the Biden administration as deputy administrator and director at the Center for Consumer Information and Insurance Oversight. She is now a managing director with the Manatt Health consulting group.

Millions — perhaps up to half of enrollees in some states — may lose or drop coverage as a result of that and other changes in the legislation combined with a new rule from the Trump administration and the likely expiration at year’s end of enhanced premium subsidies put in place during the covid-19 pandemic. Without an extension of those subsidies, which have been an important driver of Obamacare enrollment in recent years, premiums are expected to rise 75% on average next year. That’s starting to happen already, based on some early state rate requests for next year, which are hitting double digits.

“We estimate a minimum 30% enrollment loss, and, in the worst-case scenario, a 50% loss,” said Devon Trolley, executive director of Pennie, the ACA marketplace in Pennsylvania, which had 496,661 enrollees this year, a record.

Drops of that magnitude nationally, coupled with the expected loss of Medicaid coverage for millions more people under the legislation Trump calls the “One Big Beautiful Bill,” could undo inroads made in the nation’s uninsured rate, which dropped by about half from the time most of the ACA’s provisions went into effect in 2014, when it hovered around 14% to 15% of the population, to just over 8%, according to the most recent data.

Premiums would rise along with the uninsured rate, because older or sicker policyholders are more likely to try to jump enrollment hurdles, while those who rarely use coverage — and are thus less expensive — would not.

After a dramatic all-night session, House Republicans passed the bill, meeting the president’s July 4 deadline. Trump is expected to sign the measure on Independence Day. It would increase the federal deficit by trillions of dollars and cut spending on a variety of programs, including Medicaid and nutrition assistance, to partly offset the cost of extending tax cuts put in place during the first Trump administration.

The administration and its supporters say the GOP-backed changes to the ACA are needed to combat fraud. Democrats and ACA supporters see this effort as the latest in a long history of Republican efforts to weaken or repeal Obamacare. Among other things, the legislation would end several changes put in place by the Biden administration that were credited with making it easier to sign up, such as lengthening the annual open enrollment period and launching a special program for very low-income people that essentially allows them to sign up year-round.

In addition, automatic reenrollment, used by more than 10 million people for 2025 ACA coverage, would end in the 2028 sign-up season. Instead, consumers would have to update their information, starting in August each year, before the close of open enrollment, which would end Dec. 15, a month earlier than currently.

That’s a key change to combat rising enrollment fraud, said Brian Blase, president of the conservative Paragon Health Institute, because it gets at what he calls the Biden era’s “lax verification requirements.”

He blames automatic reenrollment, coupled with the availability of zero-premium plans for people with lower incomes that qualify them for large subsidies, for a sharp uptick in complaints from insurers, consumers, and brokers about fraudulent enrollments in 2023 and 2024. Those complaints centered on consumers’ being enrolled in an ACA plan, or switched from one to another, without authorization, often by commission-seeking brokers.

In testimony to Congress on June 25, Blase wrote that “this simple step will close a massive loophole and significantly reduce improper enrollment and spending.”

States that run their own marketplaces, however, saw few, if any, such problems, which were confined mainly to the 31 states using the federal healthcare.gov.

The state-run marketplaces credit their additional security measures and tighter control over broker access than healthcare.gov for the relative lack of problems.

“If you look at California and the other states that have expanded their Medicaid programs, you don’t see that kind of fraud problem,” said Jessica Altman, executive director of Covered California, the state’s Obamacare marketplace. “I don’t have a single case of a consumer calling Covered California saying, ‘I was enrolled without consent.’”

Such rollovers are common with other forms of health insurance, such as job-based coverage.

“By requiring everyone to come back in and provide additional information, and the fact that they can’t get a tax credit until they take this step, it is essentially making marketplace coverage the most difficult coverage to enroll in,” said Trolley at Pennie, 65% of whose policyholders were automatically reenrolled this year, according to KFF data. KFF is a health information nonprofit that includes KFF Health News.

Federal data shows about 22% of federal sign-ups in 2024 were automatic-reenrollments, versus 58% in state-based plans. Besides Pennsylvania, the states that saw such sign-ups for more than 60% of enrollees include California, New York, Georgia, New Jersey, and Virginia, according to KFF.

States do check income and other eligibility information for all enrollees — including those being automatically renewed, those signing up for the first time, and those enrolling outside the normal open enrollment period because they’ve experienced a loss of coverage or other life event or meet the rules for the low-income enrollment period.

“We have access to many data sources on the back end that we ping, to make sure nothing has changed. Most people sail through and are able to stay covered without taking any proactive step,” Altman said.

If flagged for mismatched data, applicants are asked for additional information. Under current law, “we have 90 days for them to have a tax credit while they submit paperwork,” Altman said.

That would change under the tax and spending plan before Congress, ending presumptive eligibility while a person submits the information.

A white paper written for Capital Policy Analytics, a Washington-based consultancy that specializes in economic analysis, concluded there appears to be little upside to the changes.

While “tighter verification can curb improper enrollments,” the additional paperwork, along with the expiration of higher premiums from the enhanced tax subsidies, “would push four to six million eligible people out of Marketplace plans, trading limited fraud savings for a surge in uninsurance,” wrote free market economists Ike Brannon and Anthony LoSasso.

“Insurers would be left with a smaller, sicker risk pool and heightened pricing uncertainty, making further premium increases and selective market exits [by insurers] likely,” they wrote.

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Four years before Kimberly Gallagher enrolled in Medicaid herself, the public health insurance program’s rules prompted her to make an excruciating choice — to give up guardianship of her son so she could work as his caregiver.

Now, another proposed twist in the rules could mean that, even though Missouri pays her to do that work, she might still have to prove to the state that she’s not unemployed.

The Kansas City, Missouri, resident has cared for her disabled son, Daniel, for all 31 years of his life. A rare genetic condition called Prader-Willi syndrome, in addition to autism, left him with an intellectual disability; a constant, excessive hunger; and an inability to speak. His needs left Gallagher, an elementary school teacher by training, with little opportunity to work outside her home.

As congressional Republicans slash about $1 trillion in federal Medicaid spending, Gallagher is among the 18.5 million Americans who could be required to prove that they work enough to keep their health insurance.

A budget bill that passed the House and Senate would require 80 hours of work or community service a month for adults who are insured through the Affordable Care Act’s Medicaid expansion program, which has allowed states to extend Medicaid coverage to more adults with low incomes. Forty states, plus Washington, D.C., have expanded their programs, additions that now cover about 20 million Americans, including Gallagher.

She enrolled in the coverage in December 2023, after she could no longer afford her private insurance. Before her husband died of cancer in 2019, the couple paid for private insurance and supported themselves on the income he earned as a master watchmaker. After his death, Gallagher was left to earn a living and find insurance on her own. At 59, she’s too young to collect her husband’s Social Security survivor benefit.

The Medicaid program that pays for in-home care for Daniel and 8,000 other Missourians with disabilities allows family members to be compensated for caregiving, but only if they’re not the legal guardian of the person they care for. So, Gallagher went to court to give up her rights to make decisions for her son and transfer authority to her parents.

“I think it’s appalling that it’s required, but it was necessary,” she said. “There was no way I could work outside of taking care of Daniel.”

Republicans have touted Medicaid work requirements both as a way to reduce federal spending on the program and as a moral imperative for Americans.

“Go out there. Do entry-level jobs. Get into the workforce. Prove that you matter. Get agency into your own life,” Mehmet Oz, administrator of the Centers for Medicare & Medicaid Services, said in a recent interview on Fox Business.

Democrats, meanwhile, have cast the requirements as bureaucratic red tape that won’t meaningfully increase employment but will cause eligible people to lose their health insurance because of administrative hurdles.

Indeed, the vast majority of Americans enrolled in Medicaid expansion are already working, caregiving, attending school, or have a disability, according to an analysis by KFF, a health information nonprofit that includes KFF Health News.

And while the Congressional Budget Office estimates the work requirement included in the House bill would cause 4.8 million Americans to lose their insurance, only about 300,000 of those people are unemployed because of lack of interest in working, according to the Urban Institute, a nonprofit research group. Recent history in states that have tried work requirements suggests technical and paperwork problems have caused a substantial portion of coverage losses.

Still, the provisions are generally popular among Republican lawmakers and the public. Sen. Josh Hawley (R-Mo.), who has repeatedly cautioned against cutting people off from Medicaid, has signaled support for adding work requirements.

And 68% of Americans favor the requirement described in the House bill, according to a recent poll conducted by KFF. But support for work requirements dropped as low as 35% when respondents learned that most Medicaid recipients already work and could lose their coverage because of paperwork requirements.

That’s what happened in Arkansas, where 18,000 people lost their Medicaid coverage in 2018 after the state phased in a work requirement. Thousands more were on pace to lose coverage in 2019 before a federal judge halted the requirement, largely over concerns about coverage losses. In discussions with focus groups, KFF found that many Arkansas Medicaid participants did not fully understand the requirements, despite the state’s outreach efforts, and some people didn’t receive mailed notices. Others were confused because the work-reporting paperwork and separate forms to renew Medicaid coverage asked for similar information.

Many family caregivers would be exempt from the work requirements proposed in Congress, but Gallagher probably would not, since she had to relinquish guardianship of her son to be paid for the work. While the hours she already logs should be enough to satisfy the requirement, she’ll need to report them again — unless the state can identify her through its existing data. But Missouri has a history of procedural problems in the state agency that administers Medicaid.

In early 2022, for example, Missouri was taking more than 100 days on average to process applications for Medicaid expansion, a wait that prompted patients to put off needed care and was more than twice the processing time allowed by federal law.

And 79% of the more than 378,000 Missourians who lost Medicaid coverage when covid-era enrollment protections ended in 2023 did so because of procedural reasons.

The next year, a federal judge ruled that Missourians were illegally being denied food aid by the state, in part because insufficient staffing at call centers left eligible people without assistance.

“They’re historically understaffed,” Timothy McBride, a health economist at Washington University in St. Louis, said of the state agency that administers Medicaid and food assistance. “I think that’s really the underlying problem.”

McBride’s analysis of Missouri’s Medicaid recipients found that fewer than 45,000 of the people enrolled in expansion in 2023 were unemployed for reasons other than caregiving, disability, attending school, or retirement. But more than twice that many Missourians could lose their insurance if work requirements prompt disenrollment rates similar to Arkansas’ implementation, according to a study from the Center on Budget and Policy Priorities, a left-leaning think tank that analyzes government policies.

The estimate assumes many otherwise eligible people would still lose coverage as a result of falling through the cracks, McBride said.

Hawley, who backed the Senate bill, declined to comment for this article. The senator previously told reporters that “we can sort that out” when asked about eligible people inadvertently losing Medicaid because of work requirements.

Gallagher worries about her coverage, because she recently was diagnosed with Hashimoto’s disease, an autoimmune disorder that attacks the thyroid gland. She said she had to search for her Medicaid card to fill the prescription that followed, having barely used it in the year in a half she’s been covered.

She also worries about her son’s Medicaid. A nursing home is not a realistic option, considering his needs. His coverage doubles as Gallagher’s only source of income and also pays for other caregivers, when she can find them, who give her breaks to tend to her own health and to her aging parents.

But nearly all in-home services like those Daniel receives are optional programs that states are not required to include in their Medicaid programs. And the magnitude of the cuts being proposed have prompted fears that the optional programs could be chopped.

“It would destroy our lives,” Gallagher said. “The only income we would have would be Daniel’s Social Security.”

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The last time a Republican-controlled Congress and President Donald Trump moved to slash Medicaid spending, in 2017, a key political force stood in their way: GOP governors.

Now, as Congress steamrolls toward passing historic Medicaid cuts of about $1 trillion over 10 years through Trump’s tax and spending legislation, red-state governors are saying little publicly about what it does to health care — even as they face reductions that will punch multibillion-dollar holes in their states’ budgets.

Medicaid, a program jointly run by states and the federal government, covers more than 70 million low-income or disabled people, including nearly half of the nation’s children. Republicans say the $900 billion-a-year program was allowed to grow too large under Democrats Barack Obama and Joe Biden by adding nondisabled adults they say don’t deserve government assistance, and they have long sought to scale it back.

Some of the biggest health cuts in the legislation Trump calls the “One Big Beautiful Bill” are achieved through new policies that would reduce enrollment by imposing more paperwork demands on enrollees, including a requirement that many prove they’re working. Those policies would affect only states that expanded Medicaid to more low-income people under the Affordable Care Act.

Nineteen of those states are led by Republican governors. Their silence on the bill’s health measures is giving political cover to GOP lawmakers from their states as they seek to cut Medicaid coverage for millions of people who gained it within the last decade.

KFF Health News contacted all 19 governors for comment on the legislation’s Medicaid cuts. Only six responded. Most said they backed imposing a work requirement on adult Medicaid enrollees.

“Implementing work requirements for able-bodied adults is a good and necessary reform so that Medicaid is being used for temporary assistance and not a permanent entitlement,” said Drew Galang, a spokesperson for Gov. Patrick Morrisey of West Virginia.

“Governor Rhoden supports workforce participation as a requirement of Medicaid expansion eligibility,” said Josie Harms, a spokesperson for South Dakota Gov. Larry Rhoden, adding that congressional lawmakers have the governor’s support: “South Dakota has an excellent federal delegation, and Governor Rhoden trusts them to fight for South Dakota’s priorities while delivering on President Trump’s promises.”

In a sign of how the political winds have changed, none of the governors said anything about another of the legislation’s significant cuts, to provider taxes — a tool that nearly all of their states use to help pay their share of Medicaid and gain additional funds from the federal government. That change is expected to cost states billions.

No Longer a Bipartisan Issue

In contrast to the radio silence from GOP governors, Democratic governors have campaigned against the megabill for weeks.

Pennsylvania Gov. Josh Shapiro posted on the social platform X that Trump and congressional Republicans were misleading Americans by saying they were cutting only waste, fraud, and abuse in Medicaid.

“They’re rushing to kick hundreds of thousands of Pennsylvanians off their healthcare — and lying about it,” he posted. “The damage this will do here in Pennsylvania and across America is staggering and will be felt for years to come.”

In New York, Gov. Kathy Hochul on July 1 charged that Trump’s legislation would devastate hospitals and could lead to more than 34,000 job cuts in her state.

“The collective impact of the GOP reconciliation bill in Washington, D.C., could force hospitals to curtail critically needed services such as maternity care and psychiatric treatment, not to mention to downsize operations, and even close entirely,” she said in a statement.

In 2017, the chorus was bipartisan, as Republican governors in Ohio, Nevada, and Massachusetts spoke out against cutting Medicaid. Trump’s bill to repeal much of the Affordable Care Act and roll back its Medicaid expansion narrowly failed in the Senate.

“It’s been surprising that red-state governors, particularly those in Medicaid expansion states, haven’t spoken out against Medicaid cuts,” said Larry Levitt, executive vice president for health policy at KFF, a health information nonprofit that includes KFF Health News. “Republican governors were a potent political force in the failed 2017 effort to repeal and replace the ACA, including Medicaid expansion.”

What’s changed since 2017, policy experts say, is that there are fewer moderate Republican governors, and GOP state executives who advocated for Medicaid expansion over a decade ago are no longer in office.

Additionally, seven of the then-red states that expanded Medicaid did so via ballot initiative, mostly over opposition from their governors.

In fact, the Medicaid work requirement is backed by many Republican governors, even if it means less federal Medicaid money and leads to fewer people covered.

Several states, including Arkansas and Ohio, have already passed state laws to implement a requirement that adults enrolled under the ACA’s Medicaid expansion work, volunteer, go to school, or participate in job training. Most states have yet to bring work requirement programs to fruition because they are waiting for federal government approval.

Charles “Chip” Kahn, president of the Federation of American Hospitals, a trade group of investor-owned hospitals, said that while fewer governors have engaged publicly in trying to block Medicaid cuts under the bill, federal lawmakers are hearing from legislators in their states.

A political dilemma for Republican governors is that, unlike in 2017, the bill before Congress is not legislation aimed expressly at repealing Obamacare. With a scope broader than health care, it would extend many of Trump’s tax cuts and direct billions in new spending toward border security, immigration enforcement, and the military, while also cutting health care spending.

“It’s like playing multidimensional chess rather than focusing on one issue,” Kahn said.

Larry Jacobs, director of the Center for the Study of Politics and Governance at the University of Minnesota, said some Republican governors may have expressed concerns privately to their states’ GOP senators but are not speaking out publicly for fear of drawing Trump’s wrath.

“Why are they being cagey? Trump and not wanting to be ‘Liz Cheney’d,’” Jacobs said, referring to the Republican former Wyoming lawmaker whom Trump helped oust after she served as vice chair of an inquiry into his attempts to overturn the results of the 2020 election.

Walking Political Tightropes

The political peril Republican lawmakers face in publicly challenging Trump remains explicit. On June 29, Sen. Thom Tillis (R-N.C.) announced he would not run for reelection after he voiced concerns about the bill and the president threatened to back a primary challenger. Tillis was one of three GOP senators to vote against it on July 1, though it still narrowly passed.

In addition to the work requirement, the biggest Medicaid cuts in the bill stem from its restrictions on provider taxes — levies that states impose on hospitals, nursing homes, and other health care institutions to help increase their federal reimbursement. Much of the additional money is then returned to the health care providers in the form of higher payments for their Medicaid patients.

The practice, which has been adopted in every state but Alaska, has been criticized by some Beltway Republicans as “money laundering” — even though the taxes are approved by state lawmakers and the federal Centers for Medicare & Medicaid Services and have been allowed under federal law for decades.

The Senate bill would limit the money states could raise — a move that would mean billions in funding cuts to states and their hospitals.

The states with Republican governors that expanded Medicaid are Alaska, Arkansas, Idaho, Indiana, Iowa, Louisiana, Missouri, Montana, Nebraska, New Hampshire, Nevada, North Dakota, Ohio, Oklahoma, South Dakota, Vermont, Virginia, West Virginia, and Utah.

One of the governors who expressed concerns about repealing the Obamacare Medicaid expansion in 2017 was Jim Justice of West Virginia, a Democrat at the time.

In a June 2017 letter to West Virginia Sen. Shelley Moore Capito, a Republican, Justice wrote: “Since so many of our people count on Medicaid, any cut to Medicaid would destroy families in West Virginia.” He added that “the consequences would be beyond catastrophic.”

On July 1, Justice — elected to the Senate as a Republican last year — voted for Trump’s megabill, including its Medicaid cuts.

“The Senator believes this bill strikes a good balance between protecting the most vulnerable and those who rely on the program while rooting out waste, fraud, and abuse to ensure the program is run efficiently for those deserving,” William O’Grady, a Justice spokesperson, said in an email July 2.

KFF Health News correspondent Arielle Zionts contributed to this report.

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

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President Donald Trump’s “One Big Beautiful” budget reconciliation bill would make some of the most sweeping changes in health policy in years, largely affecting Medicaid and Affordable Care Act plans — with reverberations felt throughout the health care system.

With only a few exceptions, the budget reconciliation process — which allows the political party in control to pass a bill with only 51 votes in the Senate, rather than the usual 60 — is how nearly every major piece of health legislation has passed Congress since the 1980s.

But using reconciliation to constrict rather than expand health coverage, as the GOP is attempting now? That is unusual.

One of the best-known programs born via reconciliation is the “COBRA” health insurance continuation, which allows people who leave jobs with employer-provided insurance to keep it for a time, as long as they pay the full premium.

That is one of dozens of health provisions tucked into COBRA, or the Consolidated Omnibus Budget Reconciliation Act of 1985. Also included was the Emergency Medical Treatment and Active Labor Act, which requires hospitals that take Medicare to treat or transfer patients with medical emergencies, regardless of their insurance status — a law that’s become a focus of abortion opponents as they seek to limit access to the procedure.

A key reason so much health policy has passed this way has to do with how Congress manages the federal budget. Federal government spending falls into two categories: mandatory, or spending required by existing law, and discretionary, which traditionally is allocated and renewed each year as part of the appropriations process.

Lawmakers use the reconciliation process to make changes to mandatory spending programs — Medicare and Medicaid are among the largest — as well as tax policy. (For complicated political reasons, reconciliation bills cannot touch Social Security, the last prong in the entitlement program trifecta.)

Reconciliation comes into play only if it is needed to reconcile taxes or mandatory spending to comply with the terms Congress sets for itself each year, through the annual budget resolution. This year the GOP’s focus is finding the cash to renew Trump’s expiring tax cuts, which largely benefit wealthier Americans, and boost military and border security spending.

In years when Congress orders a reconciliation bill, health policy almost always plays a major part. Usually, reconciliation instructions call for reductions in payments to health providers under Medicare — which costs the most of the federal health programs.

For much of the 1980s and 1990s, Democrats in Congress quietly used reconciliation to expand eligibility for the Medicaid program, often by cutting more than the budget called for from Medicare. For every $5 cut from Medicare, about $1 would be redirected to provide Medicaid to more low-income people.

But budget reconciliation has also become a convenient way to make policy changes to the nation’s major health programs, as it is usually considered a “must-pass” bill likely to be signed by the president and not subject to filibuster in the Senate.

As a result, all manner of now-familiar health programs were created by budget reconciliation bills, many of which provided health coverage to more Americans.

The 1989 reconciliation bill created a new system for paying doctors who treat Medicare patients, as well as a new federal agency to study the cost, quality, and effectiveness of health care, today known as the Agency for Healthcare Research and Quality.

Children’s health has been a popular add-on over the years, including the gradual expansion of Medicaid coverage to more children based on family income. The 1993 reconciliation bill created the Vaccines for Children program, which ensures the availability and affordability of vaccines nationwide for uninsured and underinsured kids. The 1997 reconciliation bill created the Children’s Health Insurance Program, which today provides insurance to more than 7 million children.

In fact, the list of major health bills of the past 50 years not passed using budget reconciliation is short. For instance, the 2003 Medicare Modernization Act, which added a prescription drug benefit to the program for the first time, attracted just enough bipartisan support to pass on its own.

The biggest health care law of recent decades — the Affordable Care Act — didn’t start out as a reconciliation bill, but it ended up using the process to clear its final hurdles.

After initial passage of the bill in December 2009, a special election cost Democrats their 60th seat in the Senate — and with it, the supermajority they needed to pass the bill without Republican votes. In the end, the two chambers used a separate reconciliation measure, the Health Care and Education Reconciliation Act of 2010, to negotiate a compromise that included the ACA.

HealthBent, a regular feature of KFF Health News, offers insight into and analysis of policies and politics from KFF Health News chief Washington correspondent Julie Rovner, who has covered health care for more than 30 years.

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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Durante meses, María, de 55 años, cuidadora de adultos mayores en el condado de Orange, se ha esforzado por no sonreír.

Le preocupa que si abre demasiado la boca, la gente vea sus dientes astillados y cubiertos de placa. Inmigrante sin papeles, María no tiene seguro médico ni dental. Cuando le empiezan a doler los dientes, toma analgésicos. El verano pasado, un dentista le dijo que arreglarle la dentadura le costaría $2.400. Es más de lo que puede permitirse.

“Es carísimo”, dijo María, quien generalmente trabaja 12 horas al día subiendo y bajando de la cama a clientes y ayudándolos con la higiene, a tomar los medicamentos y con las tareas del hogar. “Necesito dinero para mis hijos, para el alquiler, para el transporte, para la comida. A veces, no me queda nada para mí”.

Una organización de defensa de los trabajadores inmigrantes puso en contactó a KFF Health News con María. Por temor a la deportación, pidió que solo se usara su nombre de pila en este artículo.

María se encuentra entre los 2.6 millones de inmigrantes que viven en California sin estatus legal, según estimaciones del gobierno federal.

El estado había buscado gradualmente incorporar a estos inmigrantes a su programa de Medicaid, conocido como Medi-Cal.

Pero ahora, ante el congelamiento de las inscripciones estatales, los residentes californianos de bajos ingresos que se encuentran en el país sin papeles, junto con los proveedores y trabajadores comunitarios que los ayudan, evalúan con inquietud los beneficios de avanzar con las solicitudes de Medi-Cal frente a los riesgos de ser descubiertos y deportados por el gobierno federal.

La Legislatura de California, que busca cerrar un déficit presupuestario proyectado de $12 mil millones, aprobó una propuesta del gobernador demócrata Gavin Newsom para finalizar la inscripción en Medi-Cal en enero de 2026 para los mayores de 19 años sin estatus legal. Los legisladores están en proceso de definir los detalles finales del acuerdo presupuestario antes de que entre en marcha el nuevo año fiscal.

Mientras tanto, las redadas federales de inmigración, que parecen haber afectado al menos a una clínica de salud en el estado, ya están provocando que algunas personas teman buscar atención médica, según defensores de los inmigrantes y proveedores de salud.

Y se espera que la reciente noticia de que funcionarios de la administración Trump están compartiendo datos de los beneficiarios de Medicaid, incluyendo su estatus migratorio, con las autoridades de inmigración erosione aún más la confianza en el programa.

Andrew Nixon, vocero del Departamento de Salud y Servicios Humanos de Estados Unidos (HHS), afirmó que la agencia, que supervisa los Centros de Servicios de Medicare y Medicaid (CMS), tenía la autoridad legal para compartir los datos y abordar la “negligencia sistémica sin precedentes bajo la administración Biden-Harris, que permitió que inmigrantes indocumentados explotaran Medicaid mientras millones de estadounidenses luchaban por acceder a la atención médica, particularmente en estados como California”.

Para complicar aún más la situación, la administración Trump ha amenazado con retener los fondos de estados que ofrecen cobertura médica a personas sin estatus legal.

Actualmente, alrededor de 1.6 millones de personas que residen en el país sin documentos están inscritas en Medi-Cal.

En 2016, California comenzó a ampliar Medi-Cal a personas de bajos ingresos sin estatus legal, comenzando con los niños, y luego lo expandió gradualmente a jóvenes, adultos mayores y, en enero de este año, a personas de entre 26 y 49 años. El Departamento de Servicios de Atención Médica del estado, que supervisa Medi-Cal, se asoció con clínicas de salud comunitarias para ayudar a inscribir a las personas elegibles.

Es demasiado pronto para determinar el impacto que las últimas acciones estatales y federales estén teniendo en las cifras de inscripción, ya que los datos solo están disponibles hasta marzo. Sin embargo, muchos proveedores y defensores afirmaron que prevén un efecto negativo en la inscripción de inmigrantes, por miedo.

Seciah Aquino es directora ejecutiva de la Latino Coalition for a Healthy California, que apoya a los promotores de salud comunitarios, quienes ayudan a difundir la expansión de Medi-Cal a los adultos sin papeles. Poco más de la mitad de los beneficiarios del seguro médico público en California son latinos, en comparación con solo el 30% de los beneficiarios de Medicaid en todo el país.

Aquino afirmó que su coalición les pedirá a los promotores que informen sobre los riesgos de compartir datos para que los miembros de la comunidad puedan tomar decisiones informadas. “Se toman muy en serio que el consejo que le dieron a un miembro de la comunidad ahora pueda perjudicarlos”, expresó.

Newsom condenó el intercambio de datos, calificándolo de “legalmente dudoso”, mientras que los senadores nacionales Adam Schiff y Alex Padilla, ambos demócratas, han exigido que el Departamento de Seguridad Nacional (DHS) destruya cualquier dato compartido.

El Departamento de Servicios de Atención Médica de California anunció el 13 de junio que estaba solicitando más información al gobierno federal. La agencia dijo que enviaba informes mensuales a los CMS con información demográfica y de elegibilidad, incluyendo nombre y dirección, según lo exige la ley.

De acuerdo a lo informado, también se compartieron con el DHS datos de los afiliados a Medicaid de Illinois, el estado de Washington y Washington, D.C.

Jamie Munks, vocera del Departamento de Atención Médica y Servicios de Familia de Illinois, la agencia estatal de Medicaid, afirmó que el departamento estaba “profundamente preocupado” por la noticia, y que los datos se transmitían regularmente a los CMS con el entendimiento de que estaban protegidos.

En Sacramento, los legisladores demócratas se encontraron en la incómoda situación de tener que reducir los beneficios de salud para residentes de bajos ingresos con un estatus migratorio insatisfactorio, incluyendo personas sin estatus legal, personas con residencia permanente (green card o tarjeta verde) por menos de cinco años, y algunas otras que están en proceso de solicitar un estatus legal o tienen estatus que los protege de la deportación.

Además de apoyar el congelamiento de la inscripción a Medi-Cal para inmigrantes mayores de 19 años que residen en el país sin documentos, los legisladores acordaron cobrar primas mensuales a todos los residentes con un estatus migratorio insatisfactorio de entre 19 y 59 años. Newsom propuso una prima mensual de $100 a partir de enero de 2027; los legisladores estatales contraofertaron una de $30 a partir de julio de 2027.

“Lo que escucho en los sitios es que la gente me dice que les va a resultar muy difícil realizar estos pagos de primas, ya sean de $100 o $30”, dijo Carlos Alarcón, analista de políticas de salud y beneficios públicos del California Immigrant Policy Center, un grupo de defensa. “La realidad es que la mayoría de la gente ya tiene presupuestos limitados”.

La Legislatura rechazó una propuesta del gobernador para prohibir que los inmigrantes con un estatus migratorio insatisfactorio reciban atención de largo plazo en residencias de adultos mayores y atención domiciliaria a través de Medi-Cal, pero aceptó la eliminación de los beneficios dentales a partir de julio de 2026.

Los proveedores de atención médica afirmaron que, sin cobertura de Medi-Cal, muchos inmigrantes se verán obligados a buscar atención de emergencia, que es más costosa para los contribuyentes que la atención preventiva y de nivel primario.

Sepideh Taghvaei, directora dental de Dientes Community Dental Care del condado de Santa Cruz, presenció este fenómeno en 2009, cuando el estado recortó los beneficios dentales de Medi-Cal para adultos. Los pacientes llegaban con la cara hinchada y un dolor insoportable, con afecciones tan avanzadas que requerían tratamiento hospitalario. “No es rentable”, afirmó.

El senador estatal Roger Niello, republicano y vicepresidente del comité de presupuesto del Senado, afirmó que cree que California no debería financiar Medi-Cal para personas sin estatus legal, especialmente considerando los desafíos fiscales del estado. También expresó su preocupación por la posibilidad de que la cobertura para quienes residen en el país sin papeles anime a otros a mudarse a California.

“Si mantenemos ese gasto para los no ciudadanos, tendremos que recortar en otras áreas, y eso sin duda afectará a los ciudadanos”, aseguró.

Los californianos también están cambiando de opinión. En una encuesta realizada en mayo por el Public Policy Institute of California, el 58% de los adultos se opuso al beneficio.

Para María, los cambios en las políticas de salud la han dejado paralizada. Desde que llegó aquí hace cinco años, su prioridad ha sido ganar dinero para mantener a sus tres hijos, a quienes dejó con sus padres en su país de origen, contó.

La mujer no se enteró de que podría ser elegible para Medi-Cal hasta principios de este año y no había tenido tiempo de completar el papeleo. Después que una amiga le dijera que el estado podría congelar la inscripción en enero, comenzó a apresurarse para completar el proceso de inscripción.

Pero entonces se enteró de que los datos de Medi-Cal se habían compartido con las autoridades de inmigración. “Decepcionada y asustada”, así describió su reacción.

De repente, inscribirse en Medi-Cal ya no le parece buena idea, dijo.

Phil Galewitz y Bram Sable-Smith contribuyeron con este artículo.

Esta historia fue producida por KFF Health News, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.

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

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This story can be republished for free (details).

For months, Maria, 55, a caregiver to older adults in California’s Orange County, has been trying not to smile.

If she opens her mouth too wide, she worries, people will see her chipped, plaque-covered front teeth. An immigrant without legal status, Maria doesn’t have health or dental insurance. When her teeth start to throb, she swallows pain pills. Last summer, a dentist said it would cost $2,400 to fix her teeth. That’s more than she can afford.

“It’s so expensive,” said Maria, who often works 12-hour days lifting clients in and out of bed and helping them with hygiene, medication management, and housework. “I need money for my kids, for my rent, for transport, for food. Sometimes, there’s nothing left for me.”

KFF Health News connected with Maria through an advocacy organization for immigrant workers. Fearing deportation, she asked that only her first name be used.

Maria is among what the federal government estimates are 2.6 million immigrants living in California without legal status. The state had gradually sought to bring these immigrants into its Medicaid program, known as Medi-Cal. But now, facing a state enrollment freeze, low-income California residents in the U.S. without legal permission — along with the providers and community workers that help them — are anxiously weighing the benefits of pushing forward with Medi-Cal applications against the risks of discovery and deportation by the federal government.

Seeking to close a projected $12 billion budget deficit, California Gov. Gavin Newsom, a Democrat, signed a balanced state budget on June 27 that will end new Medi-Cal enrollment in January 2026 for those over 19 without legal status.

Meanwhile, federal immigration raids — which appear to have targeted at least one health clinic in the state — are already making some people afraid to seek medical care, say immigrant advocates and health providers. And the recent news that Trump administration officials are sharing Medicaid enrollee data, including immigration status, with deportation authorities is expected to further erode trust in the program.

U.S. Department of Health and Human Services spokesperson Andrew Nixon said the agency, which oversees the Centers for Medicare & Medicaid Services, had the legal authority to share the data to address “unprecedented systemic neglect under the Biden-Harris administration that allowed illegal immigrants to exploit Medicaid while millions of Americans struggle to access care, particularly in states like California.”

Further complicating matters, the Trump administration has threatened to withhold funds from states that provide health coverage to people without legal status. Currently, about 1.6 million people in the country without authorization are enrolled in Medi-Cal.

In 2016, California began opening Medi-Cal to low-income people lacking legal status, starting with children, then gradually expanded it to young people, older adults, and — in January 2024 — those ages 26 to 49. The state Department of Health Care Services, which oversees Medi-Cal, partnered with community health clinics to help get eligible people enrolled.

It’s too early to tell what impact the latest state and federal developments are having on enrollment numbers, since data is available only through March. But many health care providers and advocates said they expect a chilling effect on immigrant enrollment.

Seciah Aquino is executive director of the Latino Coalition for a Healthy California, which supports community health workers — also called promotores — who help spread awareness about Medi-Cal’s expansion to adults lacking legal status. Just over half of public health insurance recipients in California are Latino, compared with just 30% of Medicaid enrollees nationwide.

Aquino said her coalition will tell promotores to disclose data-sharing risks so community members can make informed decisions. 

“They take it very personally that advice that they provided to a fellow community member could now hurt them,” Aquino said.

Newsom condemned the data sharing, calling the move “legally dubious,” while U.S. Sens. Adam Schiff and Alex Padilla, both Democrats, have demanded that the Department of Homeland Security destroy any data shared.  

California’s Department of Health Care Services announced June 13 that it is seeking more information from the federal government. The agency said it submitted monthly reports to CMS with demographic and eligibility information, including name and address, as required by law.

Medicaid enrollee data from Illinois, Washington state, and Washington, D.C., was also reportedly shared with DHS. Jamie Munks, a spokesperson for the Illinois Department of Healthcare and Family Services, the state’s Medicaid agency, said the department was “deeply concerned” by the news and that the data was regularly passed along to CMS with the understanding that it was protected.

In Sacramento, Democratic lawmakers found themselves in the uncomfortable position of rolling back health benefits for low-income residents with unsatisfactory immigration status, including people without legal status, people who’ve held green cards for under five years, and some others who are in the process of applying for legal status or have statuses meant to protect them from deportation. In addition to the Medi-Cal enrollment freeze for immigrants 19 and older in the country without authorization, all enrolled residents with unsatisfactory immigration status from 19 to 59 years old will be charged $30 monthly premiums starting in July 2027.

“What I’m hearing on the ground is folks are telling me they’re going to have a really hard time making these premium payments,” said Carlos Alarcon, health and public benefits policy analyst with the California Immigrant Policy Center, an advocacy group. “The reality is most people already have limited budgets.”

The legislature rejected a proposal from the governor to bar immigrants with unsatisfactory immigration status from receiving long-term nursing home and in-home care through Medi-Cal but went along with eliminating dental benefits starting in July 2026.

Health care providers said that without Medi-Cal coverage, many immigrants will be forced to seek emergency care, which is more expensive for taxpayers than preventive and primary-level care. Sepideh Taghvaei, chief dental officer at Santa Cruz County’s Dientes Community Dental Care, saw this play out in 2009 when the state cut adult Medi-Cal dental benefits. Patients came in with swollen faces and excruciating pain, with conditions so advanced that they required hospital treatment. “It’s not cost-effective,” she said.

State Sen. Roger Niello, a Republican who serves as vice chair of the Senate budget committee, said he believes California shouldn’t be funding Medi-Cal for people who lack legal status, particularly given the state’s fiscal challenges. He also said he worries that coverage of people in the country without authorization could encourage others to move to California.

“If we maintain that expense to the noncitizen,” he said, “we’re going to have to cut someplace else, and that’s undoubtedly going to affect citizens.”

Californians, too, are going through a change of heart. In a May poll conducted by the Public Policy Institute of California, 58% of adults opposed the benefit.

For Maria, shifting health care policies have left her feeling paralyzed. Since she arrived here five years ago, the caregiver’s focus has been on earning money to support her three children, whom she left with her parents in her home country, she said.

Maria didn’t learn she might be eligible for Medi-Cal until earlier this year and hadn’t yet found time to complete the paperwork. After a friend told her that the state could freeze enrollment in January, she began rushing to finish the sign-up process. But then she learned that Medi-Cal data had been shared with immigration authorities.

“Disappointed and scared” was how she described her reaction.

Suddenly, she said, enrolling in Medi-Cal doesn’t seem like a good idea.

Phil Galewitz and Bram Sable-Smith contributed to this report.

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

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

USE OUR CONTENT

This story can be republished for free (details).