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,

We are working on some big projects this summer. So this week we’re bringing back a story from last year — actually a series, condensed into one special episode. Here we go.

A while ago, I heard a story that I just couldn’t shake. It was about a guy named Cole Schmidtknecht.

In 2024, Cole went to a Walgreens in Appleton, Wisconsin, where he lived, to refill the medication he used to control his asthma. He’d been taking it for years, and he expected to pay about seventy bucks.

But — according to a lawsuit filed by Cole’s family — the pharmacy told him his insurance no longer covered the medicine. The price for him was going to be more than $500.

He didn’t have it. So he left without his medicine.

A few days later, he had a severe asthma attack. After days on life support, he died. He was 22 years old.

And of course, Cole is far from the only person to go without medicine because of the price tag. 

In a recent survey, four in ten people said that at some point in the last year, they hadn’t taken their medicine as prescribed because of the cost. 

Most people survive, but deciding between the medicine you need to be healthy and — other necessities– it’s not OK and way too common. We need systemic change. 

And in the meantime, we can definitely benefit from help navigating this chaotic, unfair landscape. 

Because Cole Schmidtknecht did not have to leave that pharmacy empty handed. He didn’t have to die.

In their lawsuit, Cole’s family says the pharmacist at Walgreens could have told him right then and there about comparable drugs his insurance would have covered.

That’s the kind of information we all need: when the price of our medicine is more than we can really pay, what alternatives do we have?

It turns out: we have a lot of them. They’re patches, workarounds, hacks. There’s no telling which one — if any — is going to work in any particular situation. 

But as Cole’s story makes painfully clear: we can’t count on anybody to give us the information we need right when we need it. 

Everybody needs a playbook. 

So last year, with your help, we produced one. A series of podcast episodes and newsletters. 

We started by asking you:  How have you managed when your prescriptions get really expensive? And of course we heard from a lot of you who have faced this problem: 

Rachel: We went to go pick up the prescription and we were like, holy moly, that is so expensive.

Sandra Maher: We’ve been given estimates of $30,000 a dose.

Marna Miller: The pharmacist would burst out laughing every time I showed up to pick up the prescription.

Dan: And then you told us what you did next — the strategies you tried, the workarounds you found, and the moments when sometimes, you actually won.

A lot of those moves, we already knew about. Some of them were new to us.

And the truth is, a playbook — a collection of possible workarounds — isn’t a solution. There may not be a great play for you in a given situation. 

And the best available play: It could still require more work, and persistence, and patience than is fair, or right.

But all of these strategies are worth knowing about. And reviewing sometimes. So we are bringing back everything we learned in that series– the whole Prescription Drug Playbook–  in one episode, today. 

You’ll hear from folks who come at this from lots of different – and honestly really surprising– angles. 

First up, our story about a listener named Bob.

Bob’s journey is going to help us show you — well, the journey. How the trial and error works. The obstacles.

And we’ll show you the strategies Bob worked to get through those obstacles. Including a tool he developed, that we’re gonna share with you.

And I’ve got some help telling Bob’s story. Our producer Claire Davenport did most of the reporting here. Hey, Claire!

Claire: Hi, Dan!

Dan: You’re gonna tell us Bob’s story, and then at some points, we’ll zoom out — like tour guides, pointing out the big lessons

Claire: Yes! I’m super excited to get into it.

Dan: Let’s go. 

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.

Alright Claire, where should we start with Bob’s story?

Claire: First, let’s meet Bob. He’s got a very full house. 

Bob: Between me and my wife, we have five kids and uh, three dogs, and two cats and two lizards.

Claire: Did you ever anticipate you’d be a dad to so many?

Bob: Nobody plans to have many kids, Claire.

Dan: I like this guy.

Claire: By the way, Bob asked us just to use his first name for privacy reasons. But we’ve checked out his story — he sent us lots of documentation. Bob’s journey here begins in 2019 — the first day of high school for his daughter, Mary. After she got home, he wanted to hear how it went, so he called her.

Bob: We were talking and, I would say she’s being a little spacey, but, uh, talking to a 14-year-old on a cell phone, right? And, and I’ll never forget this, she, we were talking and all of a sudden she said, the ceiling looks so funny. And then, um, and then she was sort of gone.

Claire: At first, he assumed Mary had just set the phone down — maybe to talk with one of her sisters.

Bob: I text her mom and say, “Hey, I was talking to our oldest daughter, and, uh, she just sort of disappeared now she’s not answering the phone. Can you go check on her?”

And I still get even choked up talking about this. But, I get a text back in about two minutes saying “she’s unconscious.”

Claire: They end up calling an ambulance. Bob is scared.

Bob: All kinds of thoughts were running through my mind in terms of what could possibly have happened here. Epilepsy was not one of them.

Claire: Epilepsy. It’s a condition that causes seizures. And Mary was having one while her dad was on the phone with her.

Mary and her folks worked with a pediatric neurologist. They started trying out different medications and dosages.

Bob: We were told, we’re going to figure out what the right medications are for her. This is gonna be a process.

Claire: And it was. It took years of trial and error: they had to experiment with different drug combinations.

Finally they landed on the right mix. That mix included a drug called Clobazam.

Bob: And that seemed to be the magic bullet.

Claire: A magic bullet with a reasonable price tag.

Bob: The three drugs she was on were well under a hundred dollars for all three of them together and she went over a year without a seizure. And then I changed jobs.

Claire: Which had an unexpected consequence. As Bob learned when it was time to refill Mary’s prescription for Clobazam.

Bob was used to paying around 15 dollars.

Bob: This time the pharmacist comes out and says, “Hey, your, your Clobazam is gonna be $500.”

Claire: Ok, so…Dan, let’s take a step back. Bob changed jobs, and suddenly Mary’s Clobazam is $500. Because…

Dan: Bob’s new job meant… a new insurance plan for the family. And…

Claire: Every insurance plan has its own list of how much you pay for which drugs. And which drugs they don’t cover at all. That list is called “the formulary.”

Dan: That list, that formulary, is based in part on business deals that plans and drug-makers hash out behind closed doors.

Claire: So when you change jobs, change insurance: the difference between what’s on one formulary and what’s on the next: It can be…

Dan: unpredictable at best.

And even if you don’t change jobs, your job may change your insurance plan. That happens a lot.

Claire: And even if your insurance plan doesn’t change, that plan’s formulary can change from year to year.

Dan: So, Claire, this seems like the first big lesson from Bob’s story — the first big obstacle: The deal can change on you. 

And, you know, MAYBE, in this new deal, your insurance offers another drug they say is just as good.

But it may not be just as good for YOU. That’s a thing.

Claire: And it was definitely a thing for Bob and his daughter Mary. Remember, they had spent YEARS of trial and error, finding the perfect regimen.

Just switching to whatever random thing the insurance company approves? That’s not on the table.

So first, Bob thinks, hey maybe there was just some kind of mistake here. New insurance company, right? Maybe the pharmacy got confused. 

So Bob calls his insurance just to ask, and they’re like:

Bob: Oh, well that medication is only covered for a certain type of, of epilepsy

Claire: Which isn’t the type they think Mary has. They’re not gonna cover it. So, now we have arrived at the point where Bob busts out his first big strategy: Haggling with his insurance. They’ve said “no,” but that doesn’t mean he has to accept this as their final answer.

Dan: Yep, we heard from so many people — have heard over the years: This is a whole  dance, a whole fight.

Claire: Yep, and Bob’s gonna take us through it. In fact, in this very same phone call where his insurance company said they wouldn’t cover Mary’s Clobazam, they basically invited him to this dance. They said:

Bob: Well, there’s a prior authorization that can be filled out. We’ll send that to your doctor.

Dan: “There’s a prior authorization that can be filled out! We’ll send that to your doctor!” The way Bob says that, it sounds like the insurance person was so cheerful. Making things sound so easy.

But prior authorization…

Claire: That’s a hurdle, a hoop for Bob and Mary’s doctor to jump through.

Dan: This will be familiar to a lot of folks already, but: Prior authorization… PRIOR:

Claire: Before the insurance company will pay for Mary’s Clobazam,

Dan: They have to AUTHORIZE it.

Claire: her doctor has to make a case that she needs this particular treatment — and the insurance company has to decide the argument is good enough.

Dan: We see it all the time.

Claire: Yeah, and Bob isn’t thrilled by this requirement.

Bob: Seems unnecessary. This is a, you know, board certified pediatric neurologist who’s been seeing this patient for years.

Claire: And who took her through a whole long trial-and-error process to find the right meds.

Dan: Because of Bob’s confidentiality, his insurance company said they couldn’t respond directly to his story — fair enough. 

But a lot of the time, Insurance companies say: “Hey, we’re just discouraging waste with these prior authorizations! Sometimes doctors do just prescribe an expensive thing, when something cheaper would be just as good.” Okay.

But a lot of patients say, like Bob would: “In this case, my doctors and I had already DONE all this checking.”

Claire: Bob gets form sent in, but now he’s got another problem. The insurance company needs time to evaluate the prior authorization. And Mary needs her drugs right now.

Bob: She starts to panic a little bit of like, “Hey, I, I need my medication. If I miss a couple doses, I could have a seizure.”

Dan: That’s a bad problem.

Claire: Luckily: Bob found a way to get Mary’s Clobazam for less than five hundred dollars a week. We’ll get into that a little later.

But for now, just to note: It’s lucky he found that workaround.

Because when Bob calls to check on the prior authorization– PA for short– Well, here’s how he says the conversation went…

Bob: ‘Yes, we got the PA information. It was denied.’

‘It was denied? What, uh, why was it denied?’

‘Oh, well, again, it looks like it’s only approved for this one particular type of epilepsy.’

Claire: Which was just what they’d said before. Bob gets ready to appeal.

And he says this is getting to him. When we talked, he mentioned a lesson from this show:

Bob: I think you guys recommend this of like not losing your cool with the customer service people, in the insurance companies.

Dan: I mean, we do. Everybody says: It really helps.

Claire: And everybody knows. It’s not actually always possible. Here’s what happened the next time Bob calls his insurance.

Bob: They asked me, “oh, how’s your daughter doing?” And I just remember saying like, “She’s terrified. She’s gonna be walking to class and have a seizure because she doesn’t have the medication. So don’t give me this BS about how’s my daughter doing.”

Dan: You know, Bob seems like a pretty level-headed guy. Also — we’ve kind of withheld this until now– but Claire, you told me Bob works in health care, so he knows a little more about this world than most of us do. Insurance, appeals. He’s got the advantage, in terms of keeping his cool, of not being in totally foreign terrain.

Claire: Yep, and he says he recovered his cool pretty quickly.

Bob: I pulled back at when I realized what I was doing. Like this isn’t this person’s fault. They’re just probably reading a script.

Dan: But this is kind of the lesson here: No matter what kind of advantages you have, this stuff is so frustrating. Anybody can lose their cool. 

The key — and maybe we should do a whole show on this — is recovering. Because you’re gonna have to get up and go again.

Claire: Yeah, and we’re just getting to the most frustrating part.

Dan: Right.

Claire: After more than a month– and two rounds of appeals– Bob says Mary’s Clobazam finally gets approved.

Dan: And this is the frustrating part because…

Claire: Insurance will cover it now. But they tell him his share is going to be $150.  Remember, Bob said under his old insurance, it used to only cost $15.

Bob: So 10 times the price now, plus the price you know, of the other medications she’s on.

Dan: Yep. All this waiting, all this fighting, everything. And it’s still ten times more than he used to pay under his old insurance.

Claire: It’s less bad– this insurance was originally gonna make him pay more than 500 bucks. But yeah. Not great.

Dan: But Claire: this is not the end of Bob’s story, right?

Claire: Not even close.

Bob: What this sparked us to do is to look at, okay, well, if it’s not going to get approved, what are the other options?

Claire: now he’s going to work a whole different strategy: Ignoring his insurance. Because there can be better deals elsewhere. Bob starts with GoodRx.

Dan: Lots of people know GoodRx — it’s a website where you tell them what drug you need, and they’ll show you deals — discounts — at local pharmacies. Which does not always work. Saving 50 percent on drug that costs a thousand dollars does not make it affordable. I know people who get mad when you mention GoodRx.

Claire: Bob had heard of it – but didn’t think it was for  people like him, who had insurance.

Bob: like I almost, and this is gonna sound crazy, but I almost thought of GoodRx as like Medicaid. Like, I think I thought of it as like, oh, well that’s what you use if you don’t have insurance.

Dan: Interesting! And in one sense, he wasn’t wrong: When you use a GoodRx discount, you can’t use your insurance too. But it turns out, even when you have insurance, GoodRx can be worth looking at.

Claire: Yes, and here’s what makes Bob’s story stand out — the reason we wanted to really dig in. It’s what he did next. Because he didn’t just look at GoodRx. He started exploring a whole world of options. Actually, worlds. One is the world of sites LIKE GoodRx.

Dan: Ooh, I’m googling “sites like GoodRx” — here’s SingleCare, RxSaver, BuzzRx…

Claire: Yep, and for any given drug, each of these sites may show you different prices. So now that he was looking at this world, he started mapping it out.

Bob: I created this spreadsheet that had each of those options, the different medications and then the different pharmacies and where we could kind of get the best price for things.

Claire: And: Once Bob started looking at THIS outside-insurance world, he started exploring others. Like Cost Plus Drugs.

Bob: And –What was really sort of eye-opening to me is they did so much better than our insurance company did.

Claire: So the company’s full name is Mark Cuban Cost Plus Drugs — named after its founder, the celebrity billionaire.  But what makes the company different isn’t the glam factor, it’s the business model. The company buys meds direct from manufacturers, and adds 15 percent to their wholesale cost.

Dan: Plus shipping fees, and five bucks for “pharmacy labor”.

Claire: Bob added CostPlus to his spreadsheet. And he liked what he saw.

Bob: It’s very transparent and super low cost.

Claire: He asked Mary’s doctor to transfer two of her prescriptions.

Dan: But not all of them. Cost Plus doesn’t carry everything. For one thing, they mostly only carry generic drugs.

Claire: And — what matters in Bob’s case: they don’t carry controlled substances. Nobody sells them online because it’s illegal to ship them. And Mary’s Clobazam? It’s a type of controlled substance: They’re called Benzos.

Dan: Like Valium and Xanax.

Claire: Yeah. So for Clobazam, the best price he can find is 85 bucks, using GoodRx at Walmart.

Dan: Which is a LOT less than his insurance was gonna have him pay. Go spreadsheet! Head to WalMart, use GoodRx there.

Claire: Just one thing: as Mary headed off to college a few years later — she discovered there was no Walmart right nearby. And Mary doesn’t drive.

Bob: Well, she has epilepsy. She can’t have a driver’s license, so it’s uh, she can’t drive anywhere. Right? We had a Walmart near our house at home. I’m two and a half hours away from her.

Claire: And he says he made the drive.

Dan: Dad of the decade. For ALL of this. Bob fought down the insurance companies. He shopped around. He made the spreadsheets. And he made a bunch of round trips to his daughter’s college.

Claire: Yeah, Bob rules. But he’s not exactly happy about all of it.

Bob: I pay an insurance company every month outta my paycheck for prescription drug benefit that I don’t feel like I get, right? Like I’m having to go outside of that in order to get them the medications that are nothing special. Like, Clobazam has been on the market since like the seventies.

Dan: Yeah, fair.

Claire: But he may be game to take the win on that Dad of the Decade award.

Bob: I would say I did a magnificent job of, you know, staying, staying calm, and hiding that stress from Mary.

Mary: I assumed he was gonna figure it out. Um.. [laughs]

Bob: Total confidence in me, right? [laughs]

Mary: I did! I mean, I did, right? 

Dan: That’s Mary?

Claire: That’s her.

Dan: OK, so let’s review these lessons: Yes, you can fight your insurance, but you may get a better deal going outside of it. All of which sucks — this was a LOT of work, and not a total victory — but it’s better than NOT knowing any of this.

Claire: Yes. And this story ends up going full circle. Back to the first lesson. The deal can change on you. For worse. Or for better. Bob changed jobs again recently — so, new insurance. And actually, it’s good this time! Under Bob’s new insurance, Mary’s Clobazam is back to 15 dollars. Which she learned recently when she went to go pick it up.

Mary: I was like, this is amazing. Definitely a weight lifted off my chest when I saw a two digit number.  It was not like that a couple years ago and it is reassuring to know, like, if I show up and it’s $150, there are places that would have a price I could actually afford. 

Dan: Now let’s take that glass half full and add a little bit to it. Because in addition to their story, Bob gave us one more thing: His spreadsheet. And we’ve been adding to it.

Claire: Yep. We’ve got a template you can download — it’s in the show notes for this episode, and it’s in our First Aid Kit newsletter. And in addition to GoodRx, and some similar sites, and CostPlus, we’re adding lines where you can log prices from a world Bob didn’t explore.

Dan: I mean, he’s just one guy.

Claire: So, one thing we’re adding: ordering from pharmacies outside the U.S.

Drug prices are lower basically everywhere else, and some pharmacies in Canada will ship to the U.S. To avoid shady internet stuff, a tool called Pharmacy Checker will steer you to ones that are above board.

Dan: Another addition: Manufacturer coupons. SOMETIMES, especially with brand-name drugs, pharma companies offer coupons that can make drugs more affordable.

Claire: Yeah, and there’s a lot of caveats with those too. 

DAN: Claire, thank you so much! 

Claire:  My pleasure.

Dan: Just ahead – we’ll dive into some tips that really surprised us, from folks who do this kind of thing for a living.

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Dan: This episode of An Arm and A Leg is produced in partnership with ºÚÁϳԹÏÍø News — that’s a nonprofit newsroom covering health issues in America. Their journalists do amazing work. We are honored to be their colleagues. 

DAN: OK, now on to tips from professionals.  

Let’s start with Jeanne Chamberlain… Jeanne’s from North Carolina. And 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 is this question: Can I change things to get my meds for less next year?

Jeanne says one year, her team added up the impact of those conversations, and half of the people ended up changing plans, and on average, they saved 300 dollars a person. Not bad…

Jeanne: But there were many, many people who saved a thousand, 2,000, even $10,000 by changing from one Medicare plan to another based entirely on the cost of their drugs.

Dan: Jeanne wrote to tell 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 with Bob’s story. 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 maybe the doc could help them fight her husband’s insurance company to get this drug covered. But actually, this doctor’s proposal was much simpler.

Jeanne: She said, “Well,  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 formulary. That’s the list Bob had to learn about the hard way: which drugs your insurance will cover, and how much they expect you to pay for them.

So, Bob changed jobs — new insurance, new formulary. But even if you don’t change anything about your insurance, your insurance could change their formulary. 

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

Jeanne: When 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 things 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: And look, 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 — it’s called Part D — and seniors in Jeanne’s county for instance have more than a dozen plans 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. Like when they’re telling you you’re covered for next year.

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.

This is exactly the advice I wish somebody had given Cole Schmidtnect — he showed up at Walgreens expecting to pay 70 bucks for his asthma meds in JANUARY. But the formulary on his insurance had changed when the new year started. 

He had no warning those same meds would be 500 bucks — and didn’t know he had any alternatives.  

So Jeanne and other experts say: get the news early, so you can get a plan going.

Step one: Check: Can you find discounts online that make this drug affordable? Okay, 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 insurance plans — but they all require prior authorization — that process Bob spent so long fighting through — Jeanne says to ask your provider: Is one of those insurance companies 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 doctor thinks you need. And your doctor thinks you need this particular drug. So, how ELSE can your provider help? 

Well, it’s time to meet our next expert. Unlike Jeanne, who spends her days just trying to help folks in her community, John is, well..

John: I 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.

Dan: OK, here’s another tip I hadn’t really considered, from another expert.  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 the Humira example suggests this 340b thing is worth knowing about.  And before I get you too excited: it’s also definitely not guaranteed to work for you. Partly because 340B is complicated in all kinds of ways. Here’s my colleague Emily Pisacreta asking Cristy 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 — she didn’t get her employer’s OK to talk to us so we’re just using her first name – 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 a 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 at Arm and a Leg show, dot com, slash, drugs.

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

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.

Sarah Ballema is our operations manager.

Bea Bosco is our consulting director of operations.

An Arm and a Leg is produced in partnership with ºÚÁϳԹÏÍø 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 ºÚÁϳԹÏÍø 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 .

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.

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– 

Dr. Anmol Gupta is a resident physician at the University of Michigan. One day a week, he drives thirty miles north of Ann Arbor to a rural clinic and for a lot of his patients there, it’s the only doctor they can get to within an hour.

Dr. Gupta: They have to travel the furthest. They’re often the ones that are uninsured or on Medicaid. They often are coming and seeking care later than you’d wish they had access to care.

Dan: So they’re sicker. And the cost of prescription drugs comes up in like every single visit.

Dr. Gupta: I’m meeting patients who are just now being able to afford medications who maybe weren’t able to five, 10 years ago who needed it then.   

Dan: Take statins, the cholesterol-lowering drugs. One of the most popular brand-name versions, Crestor, finally went generic in 2016. Before that, a lot of patients like Dr. Gupta’s simply couldn’t afford it.. So now he wants generic versions for today’s expensive drugs to reach his patients as soon as possible. 

Dr. Gupta: We’re trying to prevent long term risks here. The faster we can start these medications, the better the outcomes in hopefully preventing devastating things like heart attacks and strokes.

Dan: Which is why what’s about to happen at the Supreme Court matters so much to him — and to millions of patients like his.

This spring — actually, this week — the court is hearing arguments in a case that could make it harder, and slower, for cheaper generic drugs to become available to patients.

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

Our show’s senior producer, Emily Pisacreta, flagged this Supreme Court case for us months ago.

Emily, you’ve been reporting the heck out of it ever since. 

Emily: Dan, I talked with lawyers. I talked with doctors. I talked with one guy who is both a lawyer and a doctor. And the good news is, you don’t need to be any of those things to understand what’s going on here.

Dan: Great — take it away.

Emily: Let’s start with the basics. When a drug company invents a new medicine, they get a patent – basically an exclusive right to sell it for about twenty years – sometimes a couple extra years.  Exclusive, without competition. That’s part of why brand-name drugs cost so much.

But when the patent expires, other companies can make a generic version of the exact same drug. Those generics usually sell for much cheaper. The legal rules of this brand vs. generic deal got hashed out back in 1984, in a law called Hatch-Waxman. We talked all about that in our last episode – but don’t worry if you missed it.

Sean Tu: Hatch-Waxman made this balance between giving protection to brand-name manufacturers to innovate and create new drugs, but then once their patents expire, the idea is we open it up for generic competition.

Emily: That’s Professor Sean Tu. He teaches law at the University of Alabama. He also has a PhD in pharmacology and a history working in the biotech industry. Sean helped write a legal brief in this case on the side of the generic drug maker.

He says this case is about that balance that Hatch Waxman tried to create. Because, drug companies don’t just file one patent and leave it at that. They file a whole stack of them… Starting with a patent on the drug itself —  the “molecule” – And then a second patent on how the drug is used. So when the first patent runs out, they might still have years of protection left on the second one. 

But it doesn’t end there. They can also patent new uses of that drug.

Sean Tu: Here’s an example and I’m just gonna make one up. I have a drug X that was first approved for diabetes. But let’s say the patent expires in 2000. And then later on I get a new patent for that same drug to treat cancer but that patent doesn’t expire until 2020.

Emily: Hatch-Waxman’s rules say generic drugmakers don’t have to wait until 2020 to sell a generic for treating diabetes. 

But they do have to be careful with their generic drug’s label. 

In the world of Hatch Waxman, the label is not just the white sticker on the orange bottle you get from the pharmacy.  

The label means all that folded-up paperwork full of small type that comes with your prescription.

It’s full of technical information about the drug. So if a generic drug-maker sells a version of Sean Tu’s made-up drug for diabetes, they have to make sure that “label” doesn’t mention that the drug can also treat cancer. In the industry they call this a ‘skinny label” 

And skinny labels are a BIG part of getting generic drugs to market — making them available– quickly. The industry says four out of ten generics get launched with a skinny label.

So, skinny labels are the big legal idea at the heart of this supreme court case. 

Now let’s talk about the specific drug in this legal tug-of-war. It’s called Vascepa.

Commercial voiceover: Discover the science of prescription VASCEPA proven in multiple clinical trials.

Emily: Vascepa’s made by a company called Amarin,  and it’s their only product. It comes from fish oil, and it’s been approved by the FDA for two different uses — well, kind of different. 

First, in 2012, to treat a rare condition involving dangerously high levels of a certain kind of fat in the blood. 

A few years later, Vascepa got approved for another condition, one that affects a lot more people: people with only slightly too much of that fat in their blood. 

Commercial voiceover: Prescription power. Proven to work now with a new indication. Ask your doctor about Vascepa.

Emily: That second approval meant a second patent for the second use. Meanwhile the patent on the first use was set to expire. When that happened, a generic manufacturer called Hikma jumped at the chance  to come to market with a cheaper, generic version. 

Newscaster: ??Finally talk quickly about Hikma Pharmaceuticals. London listed under the code HIK, but founded in Jordan [fade under] …

Emily: In 2020, Hikma launched their generic with a skinny label on the packaging. They say that skinny label was carefully written: That it only described the unpatented original use. That they definitely left out any mention of the second use– the one that’s still patented.

But Amarin — the brand name manufacturer — didn’t see it that way…and they sued them.

Amarin’s argument has two parts. First, they say Hikma’s label, even though it left out the patented use, still referenced a study that was only conducted for that still-patented use. Second, they say that in press releases, on their website, and on investor calls, Hikma described their product a little too broadly,  including calling it, quote, “the generic version of Vascepa.”

Amarin says: put those two things together, and Hikma was effectively encouraging doctors to prescribe it for the use that’s still under patent. 

The legal term for this is ‘inducing infringement’.

There’s a pretty-famous Supreme Court case about inducing infringement –at least maybe famous to legal nerds:  It involved a file-sharing service called Grokster. The whole product was basically built to help people swap pirated music and movies. But instead of my entire high school graduating class getting sued for copyright infringement, Grokster did. For inducing it.

Sean Tu says induced infringement means YOU didn’t infringe the patent yourself, but you nudged someone else into doing it. On purpose.

Sean Tu: You have to have the intent to induce somebody to actually infringe the patent. Looking at the label, looking at these fairly innocuous marketing statements, I don’t think any of them induce a doctor to prescribe for the patented indication.

Emily: And here’s the thing, some of the people who agree with Sean Tu — they aren’t who you’d expect.

Greg Chopskie: Yeah. Amarin would have you believe that doctors pay attention to investor relations calls when making their prescribing decisions.

Emily: Greg Chopskie is a patent attorney who works mostly for brand-name drug companies. About a decade ago, he was part of a team that won a $2.15 billion settlement. It was one of the biggest brand-versus-generic lawsuits ever. So, he’s not exactly a cheerleader for generic drug makers.

But he says, until recently, a case like Amarin’s wouldn’t have legs. Except things took a big turn in 2021. 

That year a big brand-name drug company, GlaxoSmithKline, – we’ll call them GSK for short – they won $235 million in damages from a generic maker called Teva. The accusation: Induced infringement. Greg Chopskie says GSK’s victory really shook things up.

Greg Chopskie: What it did was make mundane market activities potential bases for infringement claims.

Emily: Mundane marketing activities like calling your drug the generic version of something. Saying it’s been rated equivalent by the FDA. Normal things generic companies say all the time. But now…

Greg Chopskie: The focus is on what’s printed on the label, what’s being said in the market, what your detailers are telling physicians, what you’re telling investors… a much bigger scope of activities could be used to find infringement.

Emily: Teva appealed their case to the Supreme Court, but the court took a pass on hearing it. Greg thinks the Court taking up the Hikma vs. Amarin case is a sign they regret that decision.

Greg Chopskie: I think this is a little bit of buyer’s remorse from the Supreme Court that they did not take the GSK case.

Emily: So just how important is this case? And what could it mean for us? That’s next.

Emily: This episode of An arm and a Leg is produced in partnership with ºÚÁϳԹÏÍø News. That’s a nonprofit newsroom covering health issues in America. The folks at ºÚÁϳԹÏÍø News are amazing journalists — their work wins all kinds of awards, every year, and we’re honored to work with them.

Emily: How big of a deal is Hikma versus Amarin?

Sara Koblitz: So it’s, it’s a pretty big deal.

Emily: Sara Koblitz is a lawyer whose firm works with both brand-name and generic drug companies. She’s been watching this case closely, because however it goes, she says it changes how everybody in the industry operates.

And Sara says part of the reason it’s a big deal is because of how early in the process this case is being heard. No jury has weighed in. There hasn’t even been any discovery, no documents exchanged, there haven’t been any depositions. 

The question before the court is: Should this case just get tossed out without even having a trial?

Sara Koblitz: So it is deciding whether the case can continue and Amarin can continue to make those allegations against Hikma.

Emily: ?If it rules for Hikma, the generic company, the court could say, this KIND of a case just shouldn’t be a thing: Claiming “induced infringement” over what experts like Sara and Greg Chopskie say have been totally normal skinny-label practices for decades. 

The court could say: there’s no “there” there — and not just to Amarin.

Sara Koblitz: Theoretically, other companies should be on notice that they can’t bring induced infringement cases on such little evidence.

Emily: On the other hand, if the court rules AGAINST Hikma, that would be a big worry for every generic drug maker

Sara Koblitz: the idea that you can have a case go with very little evidence about what has been said to induce infringement will mean that it’s really easy to bring litigation against these generic companies. 

Emily:  Easy to bring litigation that would cost those generic companies millions of dollars to fight, Big money. And that’s just the cost if they win. If they lose… 

Sara Koblitz: The ramifications for being found guilty of induced infringement are really significant. It’s treble damages, so it’s three times the amount that the company would have made, but for the introduction of the generic drug. 

Emily: Which raises the big question here: If the Supreme Court rules against Hikma, and opens the door to lots of “induced infringement” cases, would generic companies keep trying to use a skinny label at all, or would they decide it’s just not worth the risk? 

And if they decide it’s not worth the risk and instead wait for all the patents to expire, does that mean we have to wait longer for generics?  

A 2019 study estimated that skinny labels come out an average of 3 years earlier than generics that come out after all of the patents have expired. And as Sara points out, that’s the average. Not the limit.

Sara Koblitz:  In some situations you, it could save you 10 years. You could be getting a product 10 years earlier than you would’ve gotten it if you had otherwise ?waited until the product was off patent to come to market.

Emily: And Sara is not the only one worried. In 2024, the FDA warned Congress that the GSK decision – the earlier case that set the stage for this fight – could “significantly impact the timely availability of generic drugs.” 

There’s already SOME data, from a very small study, suggesting generic companies are pulling back. Before the GSK ruling in 2021, about 43 percent of eligible drugs came to market with a skinny label. By 2023, researchers from Harvard found that only one out of five eligible drugs did so. 

Sara thinks that trend is the result of uncertainty after the GSK decision. And that Hikma vs. Amarin – no matter how the court rules – will clear away some confusion.

Sara Koblitz: ?I think that this case in particular is really important for generic companies so they can have certainty about what they’re doing and saying.

Emily: And if the Supreme Court rules in Amarin’s favor, Sean Tu worries that brand companies will get more creative about blocking skinny label competition – by filing more patents on how the drug is used–  patents that are so similar to each other that it’s almost impossible to write a label for just one of them.

Sean Tu: In the Amarin v Hikma case, the actual indication is  ‘really bad heart disease’ and ‘slightly bad heart disease’ – and then ‘preventing heart disease.’ That’s the kind of games I think are going to happen in the future.

<<<Music>>>

Emily: Oral arguments are Wednesday, April 29th. We’ll be listening. 

And you know who else will be listening? Dr. Gupta –the hospital resident we met at the very beginning of this episode. Along with his job practicing medicine, he volunteers with a group called Doctors for America — thats a group advocating for access to affordable health care. Including drugs.   

And he’s hoping the justices understand just what’s at stake for his patients.

Dr. Gupta: You know, as a doctor, when I’m sitting in front of a patient, right, I’m trying to figure out what’s the best medication for your disease. I see the benefit of generics when they come around. I’m seeing that now, but there’s still so many common medications that aren’t generics yet that people struggle to afford.

And if we can find a medication that you can afford, that’s best, right? 

Dan: Emily, thank you so much for getting us this story. 

Emily: Yeah, you bet. 

Dan: We’ll be back with another episode in a few weeks. Until then Take care of yourself.

This episode of An Arm and a Leg was produced by Emily Pisacreta, with help from Claire Davenport and me, Dan Weissmann— and edited by Ellen Weiss. 

Adam Raymonda is our audio wizard.

Our music is by Dave Weiner and Blue Dot Sessions. 

Claire Davenport is our engagement producer.

Sarah Ballema is our Operations Manager. Bea Bosco is our consulting director of operations. 

An Arm and a Leg is produced in partnership with ºÚÁϳԹÏÍø 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 ºÚÁϳԹÏÍø News. He’s editorial liaison to this show.

An Arm and a Leg is distributed by KUOW, Seattle’s NPR news 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.

OR, for a zero-cost way to help us out: Why not rate us and leave a nice review on Apple Podcasts?  People read those testimonials, and it helps folks decide to give a listen. 

Thanks! 

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–

We are kicking off a new series here — We’re calling it An Arm and a Leg 101.

We’ve spent years of reporting on two huge questions: Why does health care cost so freaking much? And what can we maybe do about it?

We’ve been chasing answers one story, one question at a time.

Now, we’re pulling together some of what we’ve learned. Digging a little deeper, going a little broader.

Starting with why so many drugs cost so much.

One of the first questions I ever asked — one of our first stories — was: How can insulin be so expensive? Wasn’t it discovered in the early 20th century? Shouldn’t it be a generic drug by now?

You know, cheap? 

And part of the answer I got was: Insulin has been transformed since the early 20th century. A lot.

A medical researcher named Jing Luo told me: Today’s insulins are a long way from what we had a hundred years ago.

Jing Luo: They’ve been really modified at a molecular level. It’s cool stuff. It’s super cool stuff. And you know, there are multiple Nobel prizes in physiology and medicine that have made this happen.

Dan: And all that super-cool stuff, those amazing discoveries, got patented.

Meaning: The patent-holders– the pharma companies — got a monopoly on those amazing discoveries.

The pharma companies claimed patents — and monopolies– on a bunch of other things too. Not all of them amazing.

But each new patent can mean another delay for a generic version coming to market.

Jing Luo: Companies can stack dozens of patents on top of each other to try to thwart generic competition because they can say, look, we’ve got three patents on the active ingredient. We’ve got patents on the medical uses of the active ingredient. We’ve got patents on the non-active excipient associated with this ingredient. We’ve got multiple patents on the devices, and so you who are trying to enter this space will sue you for patent infringement on all of them.

Dan: A patent guarantees you at least a 20-year monopoly. Drugs can generally get an extra five. 

And these extra patents — secondary patents –can keep you protected LONGER. If you don’t file them at the same time as the original: 

To talk about a drug that’s in the news right now. The original patent on the active ingredient in Wegovy and Ozempic actually expired this year.. The extra five years extends it to the early 2030s. 

But dozens of extra patents — secondary patents, filed later — mean that here in the U.S., we might not see cheaper generic versions until 2042. Or later.

And as Jing Luo told me: This strategy isn’t a secret. It’s an industry cornerstone. 

Jing Luo: When you listen to these like CEOs of pharma companies being interviewed at CNBC, you know, they’d be like, well, what about generic competition for this product? And they’ll just keep saying, no, no, no. We’ve got this really robust patent portfolio. We can withstand any challenge. We’re gonna tie this up in courts forever and don’t worry about it.We’re gonna continue this gravy boat for a long, long time. That’s the way they reinsure investors.

Dan: A robust patent portfolio. ?Or what researchers and advocates call a patent thicket.

They say quality matters less than quantity. 

The numbers are wild. 

, the 10 best-selling drugs for 2021 — drugs for cancer, HIV, arthritis — were protected by a combined total of seven hundred and forty-two patents. With hundreds more “pending.”

When these add-on patents get challenged in court, they actually get tossed out more often than primary patents..

But lawsuits cost money. A robust patent portfolio — a patent thicket — means generic companies would need to be ready to file a LOT of them.

So, we wanted to know: How did all this happen? How did these games get started?

It turns out, there is one guy who can tell you the story from the beginning, for better and for worse. Who helped shape it. Made millions of dollars from it. Saw its flaws. And has spent most of the last 30 years trying to fix them. Hie’s a lawyer named Al Engelberg, and he’s 86 years old.

Alfred Engelberg: I tell people all the time, I live in a world, a pharma world where half the people think I’m dead and the other half wish I was.  

Dan: Al Engelberg’s story is the story  of generic drugs in America. And it’s a wild ride. 

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 here is to take one of the most enraging, terrifying, depressing parts of American life, and bring you something entertaining, empowering, and useful.

?Al Engelberg’s parents fled Nazi Germany in the late 1930s.

He was born here, less than a year after they arrived. They had nothing.

And  here’s where they made their new life. 

Retro news reel: We are flying over a well-known eastern city. That is remarkable because manufacturing is almost non-existent. A city whose principle business is the entertainment of millions. Atlantic city, often called the vacation capital of the nation

Dan: Al likes to say he learned most of what he knows about practicing law on the Atlantic City boardwalk, by the time he was 16. 

Alfred Engelberg: We grew up very, very fast there. I started working when I was about nine or 10 and, and there were lots of opportunities on the boardwalk. 

Dan: His first “job” was crawling around under the boardwalk, looking for loose change.

Alfred Engelberg: But I went on to work at hotdog stands and at an illegal bingo game for the local mob.

Dan: And in every job, Atlantic City drove home its major lesson: Cheating — hustling — is something you’ve gotta expect. 

At this illegal bingo parlor, Al’s job was walking between tables, doling out bingo cards for a dime apiece. The bosses hired college kids to walk behind kids like Al, to keep him honest.

Alfred Engelberg: I mean, these guys are running an illegal game, but they still need to count, and they still inherently don’t trust anybody. 

Dan: Which was correct. Al says the college kids had their own hustle: They’d have him set aside a dollar or two before turning in his dimes — split that dollar with him fifty-fifty — and tell the bosses Al’s count was fine.

Alfred Engelberg: And everybody knowing that the counts were wildly inaccurate anyway ‘cause the little old ladies were, were stealing cards. Everybody in the room had their own thing going, you know, from the customers on.

Dan: After Al made it out of Atlantic City, his unique on-the-job education continued. He studied chemical engineering at Drexel, then took a job as a patent examiner while going to law school at night.

And at that job, he learned: The patent system was ripe for hustling.

Partly because most of his colleagues weren’t necessarily giving the job their all. 

Like him, most patent examiners were working their way through law school. And they were sneaking time to study on the job.

Alfred Engelberg: We used to be able to cut our notes down so they fit in these file drawers with the patents. And we would be reading your notes and if your boss came by, you would just drop a patent on top of the notes.

Dan: You could say it was Atlantic City all over again. Everybody in the job is sneaking something for themselves — in this case, time.

And Al Engelberg could see that, even if his colleagues gave it their all, they were too green to do their job well. 

A patent examiner’s job — deciding whether a proposed invention deserves a monopoly (which at that time was 17 years) — means deciding whether the idea for that invention would be obvious to “a person of ordinary skill in that field.”

Alfred Engelberg: And most of the examiners had never worked in that field and had absolutely no idea. And this is the big leagues. You’re granting somebody a monopoly for 17 years, and it seemed ridiculous on its face.

Dan: Al cut his own path at the patent office. He’d worked his way through engineering school, in manufacturing plants, he saw what people of ordinary skill in that field solve problems every day. So he specialized in examining patents he actually knew something about.

That got him promoted, then it got him recruited by a corporate lawyer.. After the company paid his way through the rest of law school, he jumped to the Justice Department. 

He was ambitious– he wanted experience junior lawyers don’t usually get — like trying cases of his own.

After a few years doing just that, he took a job with a small law firm in New York City in 1968.

Alfred Engelberg: I came to New York to private practice at the age of 30 and I was ready to go. I mean, I was ready to, to tear the world apart and I did.

Dan: Patents were still a specialty. Then, in 1973, he gets a call that leads to his first generic drug case.

Generic drugs were not a hot market at the time.

Alfred Engelberg: ?The generic drug industry in 1970s was essentially, a half a dozen, privately owned family businesses, mostly in the metropolitan New York area. And most of the drugs that they were selling were drugs that were approved before 1962. 

Dan: Yeah. 1962 is when the FDA made it harder to get a new drug approved — you had to go through long clinical trials to show that your drug was safe and effective. 

Even if your drug was a generic version of an existing drug. Those little companies didn’t have the capital to run those trials, so they were stuck selling those old drugs.

Not much of a business. Maybe 20 percent of prescriptions were for generic drugs.

So when Al Engelberg got a call for his first generic drug case, that was the context. And the case itself did not sound promising. For one thing:

Alfred Engelberg: The call wasn’t even from the client. It was from a bank. The client was bankrupt. 

Dan: The client was bankrupt. This bankrupt client, Premo Pharmaceuticals, was getting sued for patent infringement. The bank was willing to put up ten thousand dollars for a defense. Nowhere near enough to actually try a case. Oh, and…

Alfred Engelberg: From what they told me, the information they gave me, we didn’t have a very good defense.

Dan: But Al Engelberg saw an opening. He could see that his opponents have weaknesses too.

Alfred Engelberg: The patent owners were in a very strange position. If they won, they got nothing because we were already bankrupt. Two, they were gonna have to spend the legal fees to win.

Dan: Win against a young lawyer named Al Engelberg who already had a rep as a tough opponent. So they could lose.

Alfred Engelberg: And if they lost, they would lose millions and millions of dollars in business because there wouldn’t be a patent. And they’d have competition from generic drugs.

Dan: And meanwhile, Al Engelberg is also sizing up the judge. He knows the guy doesn’t love patents.

So Al shows up to the first conference and he bluffs. 

Alfred Engelberg: I said to the judge, oh, your Honor, you know, it’s another one of those patents. They’re all invalid. And I said, we don’t need very much discovery. We’re, we’ll be ready to go to trial in a few months. Just set a trial date.

Dan: The other side walks out beside themselves.

And within a couple of weeks they call Al to say: Hey, how about this? You guys just acknowledge our patent is OK, and we’ll give you the money we would’ve spent litigating. Call it 400,000 bucks?

Alfred Engelberg: I called the client and said, how’s $400,000? He said, are you kidding?

Dan: They didn’t just get out of trouble — they got out of bankruptcy, with $400,000 in their pockets. Because Al Engelberg knew how to size up a situation.   

Alfred Engelberg: You don’t learn that in law school. That’s not what they teach.

Dan: Word gets  around about that case, and pretty soon everybody in the generic drug world is calling him.

It’s a small world, but by the end of the 1970s, there may be room for it to start getting bigger. 

People are starting to notice: Drugs are expensive. Maybe there should be more cheap generics. 

Some generic drug companies form an association and start lobbying: Make it easier to get generic drugs to market without having to go through all those trials.

The brand-name drugmakers push back: They say it takes so long to run the trials and get their drugs approved, they don’t get enough time to make money before those patents expire.

In 1983, Democratic Representative Henry Waxman steps in to broker a compromise, with Republican Senator Orrin Hatch.

And Mr. Engelberg goes to Washington. To run strategy for the generic drugmakers. 

Alfred Engelberg: In a lot of ways , that’s where my Atlantic City training really helped me at the end of the day

Dan: There were a lot of people, with a lot of interests. A lot of angles. ?He starts commuting from New York to Washington DC a couple times a week — for months and months, more than a year.

And Al Engelberg says: This time, it wasn’t just about winning a case.

Alfred Engelberg: I was in the back of a cab the way I remember, with the senior partner of the law firm. And he says to me, why are you breaking your ass going to Washington two or three times? Why don’t you send an associate? You know, it’s just like, it’s just another case. And I said. I said, are you kidding? I said, you know, how many lawyers ever get to do what I’m doing right now? To be at the table influencing what may be a major law that’s gonna have major consequences is, is like something I never thought my whole life I’d be doing.

Dan: A kid from Atlantic City was exactly the right person to try to balance all the angles, negotiate a compromise. It took more than a year. It almost didn’t happen. But then it did. Congress passed the bill, and President Ronald Reagan got in front of cameras to sign it.

Ronald Reagan: Let me turn my attention to the real reason we’re here this afternoon, signing into law the Drug Price Competition and Patent Term Restoration Act of 1984. 

Dan: better known as Hatch-Waxman.

Hatch Waxman had three basic components:

One: Brand drugmakers got a few extra years on their patents.

Two: Generic drugmakers got a pathway to get FDA approval.

And three –The new law laid out rules for a generic drugmaker when they wanted to CHALLENGE an existing patent. 

Negotiating that third part was the part where Al Engelberg’s education on the Atlantic City boardwalk, and the U.S. patent office, and the generic drug industry came together: The result would make him millions and millions of dollars — and blow a giant hole into the grand bargain he had worked so hard to bring about.

That’s coming right up.

This episode of An arm and a Leg is produced in partnership with ºÚÁϳԹÏÍø News. That’s a nonprofit newsroom covering health issues in America. The folks at ºÚÁϳԹÏÍø News are amazing journalists — their work wins all kinds of awards, every year. We are honored to work with them.

So. The brand-name drug makers and the generic drug makers struck a deal. That deal was good for them. Both sides got something big out of it. The public was supposed to get something out of it too.

And, to be fair, we did: Remember, back then, maybe one out of five prescriptions was for a generic drug. Now it’s nine out of ten.

But we pay more than ever for drugs. Mostly for branded, patent-protected drugs. And the biggest, most-important, most profitable drugs get locked behind patent thickets.

How did that happen? 

Well, to understand that, it helps to know what Al Engelberg got out of the whole bargain.

Al had been there at the bargaining table, on behalf of the generics. 

One day, during those negotiations, he was in the office with Henry Waxman’s lead counsel, a guy named Bill Corr, when Corr got a call from someone on the other side.

Corr starts pointing at the phone, pointing to Al — indicating: This guy is talking about you.

When Corr gets off the phone he says: That guy’s not sure about this deal where bad patents could be challenged. He’s suspicious about where you might take this. Like, are you just gonna set up a bounty-hunting operation, to get patents declared invalid?

And Corr said, Al, would you do that? 

Alfred Engelberg: And I said, you know, Bill, until this moment, I’ve never given it any thought, but it’s a hell of a good idea. Maybe I’ll look at it. 

Dan: And he did. Starting almost as soon as Hatch-Waxman became law.

Alfred Engelberg: And we sat in the rose garden, September 23rd, 1984, watched Reagan sign the bill. And in December of that year, I sat down at my kitchen table with a yellow pad and I laid out a strategy.

Dan: If you were gonna set up a bounty-hunting operation, how would you do it?

Al Engelberg knew a lot of patents were garbage. Knew it from his time in the patent office, knew it from practicing law. And he knew how much money a successful patent challenge could be worth.

The way Hatch-Waxman worked: If a generic drug company challenged a patent and won, they would get six months before any OTHER generic drugmakers could get a crack at the market.

So their only competition would be the brand. If a pill cost two cents to make, and the brand was selling for a dollar a pill — that’s 98 cents of profit for every pill.

You’re the only competitor? You could charge 75 cents a pill and get 73 cents of profit. On a hit drug, you could make millions and millions — just in those six months. 

Al’s idea was this: Partner up with a generic drugmaker. Go find cases– drugs with weak patents. Win ’em. 

And split those millions in potential profits fifty-fifty. 

Al pitched a generic drugmaker — they were ready to go — and brought the deal to his law firm. .

Alfred Engelberg: As it turned out, my partners weren’t interested in having me do this. They tried to talk me out of it.

Dan: But they couldn’t. So he left. Went out on his own. All on his own.

Alfred Engelberg: I never hired a single soul, not even a secretary. And I couldn’t type. I still can’t type.

Dan: But he hunted and pecked his way through brief after brief. He bought an early portable computer — it weighed thirty pounds — and lugged it around in the back of his car. For ten years.

Alfred Engelberg: It was stupid. I almost killed myself. But, it worked out okay.

Dan: Yeah. Turns out Al was really good at finding the problems with drug patents.

In one of his first cases, Al Engelberg personally made more than 70 million dollars. Others settled: A few million here, a few million there– it adds up.

And then…

Alfred Engelberg: It got to be the mid nineties, and I was working on a case called Buspar. 

Dan: The Buspar case ended up a big winner for Al Engelberg and his generic drug partners. 

But it had consequences that went way beyond a single case. And led to big losses for the public.. Here’s how it went.  

Alfred Engelberg: Buspar was an anti-anxiety drug. And by all accounts not a very good one.

Dan: But Bristol Meyers Squibb invested in big advertising and marketing campaigns.

Speaker 5: I feel anxious. I can’t concentrate. 

Speaker 6: I’m so irritable. If you. You suffer from excessive worry. It can feel like a mountain of anxiety. 

Speaker 5: I’ll never get it all done. I’m overwhelmed. 

Speaker 6: But a prescription medication called buspar can help.

Dan: And all that marketing did its job. By the mid-1990s, Buspar was making more than 200 million dollars a year for Bristol.

Alfred Engelberg: The only problem for them was that the drug was not new. 

Dan: The active ingredient was well-known in medical literature as a tranquilizer. Nobody had bothered to market it.

So Bristol Myers Squibb filed a patent on it, claiming it had discovered a new use for this well-known tranquilizer: Treating anxiety.

Al Engelberg says when he read the patent application, he could barely believe it: What do tranquilizers do if not… treat anxiety?

It’s like saying: There’s this stuff called sugar. We’re gonna take out a patent on using it as a sweetener.

This looked like a case for a guy from Atlantic City. 

Alfred Engelberg: I did something that lawyers don’t. That’s just the way I was built. 

I filed a motion with the court and basically said, we don’t need any evidence.

You just have to read the patent. If you believe it’s true, the patent’s invalid. Just, you know, all you need is a dictionary basically.

Dan: Al says Bristol was eager to settle. 

Alfred Engelberg: We get into a settlement discussion and we keep saying, no, no, no, no.

Dan: Al’s partners had done the math: They figured they stood to make a hundred million dollars or more once they won. So when the other side offered 25 million, no was the easy answer.

Alfred Engelberg: We said, why are we gonna take this? You know, it’s crazy. There’s a reward here we know what it is. We’re gonna get it eventually.

Dan: Al sits down with a lawyer from the other side, a guy he knows, explains how he sees the math.

And soon the other side comes through with a much bigger offer: 72 million dollars – almost three times as much. 

Alfred Engelberg: And I’m sitting there like, what are you crazy? But then think about it from their point of view. 

Dan: Paying 72 million dollars is nothing, compared to what Bristol stands to gain if this lawsuit goes away. 

With their monopoly, Bristol Meyer Squibb is making more than 200 million dollars a year on Buspar. And unless somebody else lines up to do what Al Engelberg had done, expect to keep that monopoly for years.

Charging whatever they want. Two dollars a pill, three dollars a pill. Which Al Engelberg says is exactly what happened.

In fact, they kept that monopoly for like five years. 

Alfred Engelberg: As it turned out, nobody came behind us. And so, they had that monopoly until 2000. So they got five years of 2 billion, in gross profits. 

Dan: They made out.

Alfred Engelberg:  For the cost of $75 million. And you know, the public got screwed ’cause they are continuing to pay, you know, $2 a pill or $3 a pill for a drug that eventually ends up being available for 20 or 30 cents. Um, so that’s, that’s how it works.

Dan: That’s how it works. The branded company and the generic company both make out great. Cheaper generic versions of a drug get delayed. 

That amazing payday for Al Engelberg and his partners at the generic drug company turned into a model a template for the kind of deal that every generic drug company would want in on.

It got a nickname: Pay for delay.

Alfred Engelberg: That spread through the industry like wildfire, those numbers, you know, you don’t make those numbers half a cent at a time on, on pills,

Dan: Lawsuits were way more profitable.

But Al Engelberg wasn’t filing them.

A year or so after the Buspar case settled, sparking the Pay for Delay gold rush, he retired. He had plenty of money and nothing to prove.

And in retirement, he started evaluating what he’d accomplished, for better and for worse.

For better, generic drugs had more than doubled their share of the market since Hatch-Waxman took effect.

For worse, he could see two places where — despite all of his Atlantic City training — he had missed a couple of angles in negotiating Hatch-Waxman. 

One was: this whole pay-for-delay scheme. Turned out, in balancing incentives for brands and generic makers, he’d left open this perverse incentive that left the public out. 

And the second was a loophole  that Hatch-Waxman had left open.: 

It created a process where players like Al and his generic partners could challenge patents on drugs like Buspar, that they thought didn’t deserve protected monopolies. It removed some friction for those attacks. 

The drug companies developed a way to add more friction:  stacking extra patents — secondary patents — on every drug.

Developing patent thickets.

Even if a secondary patent is trivial  — and lots of them do get tossed out — challenging it means a court fight. And that costs money.

Alfred Engelberg: It caused the big drug companies to just get more and more patents. Because why not? You know, there was nothing standing in the way.

Dan: I mean, nobody knows better than Al Engelberg: Patent examiners don’t exactly stand in the way. 

And those patent thickets and pay for delay, they feed on each other. 

Alfred Engelberg: The economics of the business, caused these kinds of settlements to reach epic proportions. So the generic companies would, challenge these secondary patents and, the drug companies would pay them off.

Dan: In 1999 he published an article in a scholarly journal arguing that Hatch-Waxman needed a reboot. Even the six-month head start for a successful challenge could probably go. 

And ever since — for more than twenty-five years — he’s poured millions of dollars into efforts to tighten the rules. Funding research. A public-information campaign from Consumer Reports. Even a center for IP law at his alma mater, NYU.

It hasn’t always gone his way. 

Pay for delay has gotten much bigger since Al Engelberg wrote his first article calling for reform: He wrote in 1999 that about two dozen patent challenges had been filed.

Now he estimates that number at twelve thousand.

Alfred Engelberg: I can’t tell you how many tens of billions of dollars in legal fees that is. It’s one of the fastest growing and and steadiest industries for big law.

Dan: A Hatch-Waxman litigation forum on LinkedIn has more than fourteen thousand members.

And Hatch-Waxman doesn’t cover many of today’s the top-selling drugs– the biggest moneymakers. They belong to a class called “biologics.”

That includes famously-expensive rheumatoid arthritis drugs like Humira and Enbrel — and insulin. 

Biologics weren’t a category forty years ago when Hatch-Waxman got negotiated. Congress passed a new law to deal with them in 2010 — ?the Biologics Price Competition and Innovation Act.

Al Engelberg is not a fan of that law.

Alfred Engelberg: Whatever mistakes were made in Hatch Waxman, they were multiplied by 10 and deliberately in the biologics law

Dan: He says the all but encourages patent thickets. And doesn’t provide a pathway to challenge them.

He says it reminds him of some of his early days practicing law.

Alfred Engelberg: Back in the seventies, we used to have small startup clients in the computer field, and they would get letters from IBM. It says, we are ready to inform you that you may be infringing one or more of the following patents. And there was a 10 page list of patents attached. And the startup would come to us and say, you know, what should we do? And we would say, find another line of work, you know, what are you gonna do?

Dan: But he has not given up. In 2025, he published a book: Breaking the Medicine Monopolies.

It tells the story of his career — and lays out his prescriptions for fixing the problem.

He doesn’t JUST focus on plugging the holes in Hatch-Waxman and the biologics law.

Alfred Engelberg: You know, we don’t actually need a generic drug industry. We need generic drug pricing. 

Dan: He’s got proposals for an increased government role in negotiating and regulating prices — and more than that.

He argues that a 1980 law allows the government to commisssion generic versions of drugs that were developed using public research dollars.

He also says the FDA rules that protect secondary patents on drugs — that allow patent thicketing — are based on a completely wrong interpretation of Hatch-Waxman.

And tells us he’s working up a challenge, with help from AI tools like Claude. 

He’s 86 years old. And he doesn’t seem inclined to stop.

Alfred Engelberg: It so changed my life and I did so well by it, I thought, how can I not take on this problem? Who’s gonna do it if I don’t do it?

Dan: He’s got the time. Money’s no object. And he knows the territory as well as anybody. He helped create it. 

Alfred Engelberg: So it’s, it’s my obligation really. It’s that sort of Jewish guilt. What can I tell you? I’m paying back for the bingo game.

Dan: So we’ve gone back more than fifty years on the question: Why aren’t there more generic drugs? We’ve learned why we’ve got the ones we have, and what stands in the way of getting more.

And that is just in time. Because this spring the U.S. Supreme Court will hear arguments in a case that could restrict the generic drug pipeline even further. It could have major implications.

And understanding what they are requires all of the 101 we’ve covered here. We’ll have that story for you in a few weeks. Til then, take care of yourself. 

This episode of An Arm and a Leg was produced by Emily Pisacreta, with help from Dan Weissmann— and edited by Ellen Weiss. 

Adam Raymonda is our audio wizard.

Our music is by Dave Weiner and Blue Dot Sessions. 

Claire Davenport is our engagement producer.

Sarah Ballema is our Operations Manager. Bea Bosco is our consulting director of operations. 

This series — An Arm and a Leg 101 — is made possible in part by support from Arnold Ventures. 

An Arm and a Leg is produced in partnership with ºÚÁϳԹÏÍø 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 ºÚÁϳԹÏÍø News. He’s editorial liaison to this show.

An Arm and a Leg is distributed by KUOW, Seattle’s NPR news 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.

[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.] 

Mary Agnes Carey: Hello from ºÚÁϳԹÏÍø News and WAMU radio in Washington, D.C. Welcome to What the Health? I’m Mary Agnes Carey, managing editor of ºÚÁϳԹÏÍø News, filling in for Julie Rovner this week. And as always, I’m joined by some of the best and smartest health reporters covering Washington. We’re taping this week on Friday, April 17, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So here we go. 

Today we’re joined via videoconference by Anna Edney of Bloomberg News. 

Anna Edney: Hi, everybody. 

Carey: Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine. 

Joanne Kenen: Hi, everybody. 

Carey: And my ºÚÁϳԹÏÍø News colleague Emmarie Huetteman. 

Emmarie Huetteman: Hey there. 

Carey: Later in this episode, we’ll play Julie’s interview with immigration attorney Michelle Canero about the impact the Trump administration’s immigration policies are having on the medical workforce. But first, this week’s news — and there is plenty of it. 

On Thursday, President [Donald] Trump nominated Dr. Erica Schwartz to lead the Centers for Disease Control and Prevention. Schwartz, a vaccine supporter, served as a deputy surgeon general in President Trump’s first term, and during the coronavirus pandemic she ran the federal government’s drive-through testing program. She’s also a Navy officer and a retired rear admiral in the Commissioned Corps of the U.S. Public Health Service. Her appointment requires Senate confirmation. President Trump also announced other changes to the agency’s top leadership: Sean Slovenski, a health care industry executive, as the agency’s deputy director and chief operating officer; Dr. Jennifer Shuford, health commissioner for Texas, as deputy director and chief medical officer, and Dr. Sara Brenner, who briefly served as acting commissioner of the FDA [Food and Drug Administration], as a senior counselor to Department of Health and Human Services Secretary Robert F Kennedy Jr. So we’ve discussed previously on the podcast several times that the CDC has lacked a permanent director for most of the president’s second term. Will Dr. Schwartz, if confirmed, and the other members of this new leadership team make the difference? 

Huetteman: I think that we’ve seen a CDC that’s been in a protracted period of turmoil, and this is going to be an opportunity for maybe a shift in that. Dr. Schwartz would actually be the agency’s fourth leader in a little more than a year, and we’ve talked on the podcast about how naming someone who could fit the bill to lead the CDC was a difficult task facing the Trump administration. They needed someone who could support the MAHA [Make America Healthy Again] agenda while not embracing some of the more anti-vaccine views, and that person needed to be able to win Senate confirmation, which isn’t a given, even with this Republican-controlled Senate. 

Edney: And I think we’ve seen that there have been some people already in the MAHA coalition that have come out and been upset about this pick. So I think what that shows is a calculated decision by the administration to, kind of, as they’ve been doing for this year, is kind of not focus on the vaccine part of Secretary Kennedy’s agenda and to, as Emmarie said, try to get someone that can get through Senate confirmation. We’ve already seen the surgeon general nominee be held up in the Senate because she was not as strong on vaccines as I think some would have liked to see when she had her confirmation hearing. 

Kenen: So this happened late yesterday, and I’ve been traveling this week, but I did have a chance to talk to some public health people about her, and there was sort of this audible sigh of relief. The Senate is a very unpredictable place, and we live in very unpredictable times. At this point, my initial gut reaction is she’s got a pretty good chance of confirmation. The other thing, I think some of the other appointees, there’s a little bit more concern about, but what really matters is who is the face of the CDC, and she would be the face of the CDC. She would be in charge, and people like her. Also, this is an administration that has not had a lot of minorities, and she will be, she’s a Black woman. respected in her field. And that also is going to — she needs to be able to speak to all Americans about their health, and I think that people welcome that as well, both her credentials and her life experience. So, yeah, I think that MAHA is sort of in this funny moment now, because clearly Kennedy isn’t doing everything that people wanted or expected. And so we’ll sort of see how the — I think if he had his ideal CDC director, this, we can probably surmise that this would not, she would not be the first on his list. But there’s a certain amount of adaptation going on at the moment. So I think many, many people will be relieved to see somebody get through, confirmed pretty quickly. People can get held up for things that have absolutely nothing to do with the CDC or public health. The Senate has all sorts of peculiarities. But I think there’s probably going to be a desire to get this done pretty quickly. 

Carey: All right. Well, we’ll see what happens, and we will go back to the MAHA folks a little bit later in the podcast. But right now I want to shift to Capitol Hill. Thursday was a very big day on the Hill for HHS Secretary Kennedy. He kicked off a series of appearances before Congress. This week he’s testifying before three House committees before he heads over to the Senate next week. This is the first time that the secretary has visited some of these House panels, and while the purpose of the latest congressional visit is to talk about President Trump’s HHS budget request, this also was the first time that a lot of lawmakers ever had an opportunity to talk to Kennedy, and what they asked him sometimes deviated, maybe quite a bit, from that subject of federal funding. The topics included Medicaid fraud, measles outbreaks, the birth-dose recommendation for the hepatitis B vaccine, peptides, unaccompanied minors, and more — actually, much more when you look at the hearings from yesterday, and I’m sure that will also happen with today’s session. What stood out to you about Kennedy’s testimony this week? 

Edney: I think it was the mix of questions, and you sort of alluded to this, but they wanted, the members of Congress wanted to talk about so many things. And I feel like in the earlier hearing, which was in the House Ways and Means Committee, that it was, there was a lot of focus in the beginning on fraud, and that sort of surprised me, and then we saw maybe one or two questions on vaccines. And so I thought the mix of questions, the things that members were interested in, were really interesting. And it did — there were some fiery moments, but for his first time on the Hill in a while, for such a controversial Cabinet member, I thought they were pretty tame. 

Kenen: Yeah, I watched a fair amount of the morning. I did not see the afternoon, but I read about the afternoon, and I totally agree with Anna’s take. This administration and Kennedy did what this administration has been doing. They blame all problems on [former president Joe] Biden and the prior administration. And to be fair, Democrats, when they’re in power, they, I don’t think they do it quite to this extreme, but Democrats spend, when they have the chance, they blame things on Republicans. So that’s sort of Washington as usual. The emphasis on fraud has been a hallmark of this administration, particularly in health and social services. And you’ve seen, of course, in the way they’ve gone after blue states in particular. And a lot of their justification for the changes in Medicaid that are coming in the coming year are supposedly because of massive fraud and they’re cracking down. It was not dominated by vaccines, and I was watching Kennedy’s face really carefully. When he was asked about the first child to die of measles in Texas last year, and a Democrat asked him could the vaccine have saved her life, and you could sort of see him just, you just sort of watch his facial expressions, and he knew he had to say this, and he came out with the word “possibly,” and, which is a change. And then in the afternoon — where I did not, as I said, I did not watch the afternoon, but I read about it — he was much more certain. He was much stronger about the measles vaccine and said it’s, the measles vaccine, is safer than measles, which is a big signal shift there. 

Huetteman: It’s true, although I will point out, though, that he did stand by the decision to remove the recommendation for the birth dose of the hepatitis B vaccine when he was pressed on that. So it was, I agree it was a softening, I’d say. At least it wasn’t a dramatic turnaround from what he’d said or not said in the past. But for him, it was at least a softening. 

Kenen: In the hepatitis B recommendation, he said that the biggest threat to infection was at, through birth, at, through the mother, and if you test the mother, the baby is not at risk. And that’s partially true, and that is a significant factor to eliminate risk. It doesn’t — it minimizes risk. It does not eliminate risk. Babies can and have been infected in the first weeks of life in other ways. The recommendation was not to totally eliminate that vaccine. It was to postpone it. But there’s, public health, still believe that, in general, many public health leaders would still say that the vaccine at birth is the better way of doing it. 

Carey: The focus was, theoretically, on the budget request from the administration. Did the secretary shed any light on those priorities or their impacts? I was taken, I think in the afternoon hearing I read about various lawmakers, including Rosa DeLauro from Connecticut, who sort of just said: A CDC cut of 30%? We’re not gonna do that. And there were also some Republican members who jumped in to sort of say, I don’t think we’re going to do the cuts you envision. But did the secretary defend them? Did he bring any new clarity to them? 

Edney: I don’t feel like I gained any new clarity on it. I think to bring it back to Budget 101, I guess, is like when the president, when the administration, sends down their budget, I think a lot of people already assume it’s dead on arrival. And maybe even though Kennedy is there to talk about the budget, it does become this broader hearing, because they don’t get him on the Hill that often and people go there to talk about all kinds of things, and I think that he probably knew that he didn’t have to defend it in the same way, because it’s not going to happen. 

Carey: Sure. As they say, the president proposes and Congress disposes. But Joanne, you want to jump in? 

Kenen: Yeah, there’s something significant about this administration, which is Congress has repeatedly authorized more money for various health programs and science programs, and the administration doesn’t spend it, so that there’s a different dynamic. Traditionally, yes, Congress — the president proposes, Congress legislates, and then people go off and spend money. That’s what people like to do. And in this case, when Congress has, in a bipartisan way, differed with the administration and restored funding, it hasn’t all gone, those dollars haven’t gone out the door. So the entire sort of checks-and-balances system has been askew in terms of funding. I agree with everybody here. I do not think that Congress is going to accept these extreme cuts across the board in health care and health policy, in public health and science and NIH [the National Institutes of Health] and everything, but I don’t know what they’re actually going to spend at the end of the day. 

Carey: Emmarie, you wanted to jump in. 

Huetteman: Yeah, there was one striking exchange to me where the secretary acknowledged he wasn’t happy with the cuts that were proposed. I think those were his words. But he pretty quickly added, and neither is President Trump, and he framed it as a matter of making hard decisions when faced with federal budget shortfalls. 

Carey: All right. Well, we’ll keep watching this as it moves through Congress. Also during yesterday’s House Ways and Means hearing, some Democrats took issue with past statements from Secretary Kennedy and President Trump that linked Tylenol use during pregnancy to autism in children. released this week in JAMA Pediatrics found that the use of Tylenol by women during pregnancy was not associated with autism in their children. This nationwide study from Denmark followed more than one and a half million kids born between 1997 and 2002, including more than 31,000 who were exposed to Tylenol in the womb. in another medical journal examining community water fluoridation exposure from childhood to age 80 found no impact on IQ or brain function. Kennedy has claimed that fluoride in water has led to IQ loss in children. These studies clearly debunk medical claims that have gotten a lot of attention. Will these findings have an impact now? 

Kenen: I think we’ve seen over and over and over again that there are people who are very deeply wedded to certain beliefs, and new science, new research, does not deter them from those beliefs. We also see some people who are sort of in the middle, who are uncertain, and new findings can shift their beliefs, right? And then, of course, there’s a lot of — these are not new studies. I mean these are new studies but they are not the first of their kind. The reason we’ve been using fluoride for, what, 60 years now in the water. Tylenol has been around a long time. So is it going to change everybody’s belief? No. Is it going to perhaps slow the push to ban fluoridation? Perhaps. But I just don’t think we know, because we’re sort of on these dual-reality tracks regarding a lot of science in this country, where once people sort of buy into disinformation, they’re very, it’s very hard to change — or misinformation — it’s hard to change people’s minds. 

Edney: I do think, on the Tylenol front — I absolutely agree with what Joanne said overall. And I think on the Tylenol front that it’s possible that this study will give pediatricians something to give and talk about with parents that are asking. I think there still is some confusion among some people. It’s not a huge, I don’t think, widespread thing, but I think there are some new parents who are wondering. And if you are able to take this study that is published in 2026 — it just happened, it was after Trump made his statements — I think maybe that would give them something to talk about with their patients. 

Kenen: I agree with Anna. I think the Tylenol one is easier to change than some of the fluoridation stuff going on, partly because so many of us — and we should just say, it’s not just the Tylenol, the brand. It’s acetaminophen, which I’ve never pronounced right. I think those of us who have been pregnant, we’ve taken that in our life before and we don’t think of it as a big, dangerous, heavy prescription drug. I think we’ve, it’s something we feel comfortable with. And I think there’s also the counterinformation, which is, a fever in a pregnant woman can, a pregnant person can be dangerous to the fetus. So I think that one’s a little — and I don’t, also, I don’t think it’s as deep-rooted. The fluoridation stuff goes back decades, and the Tylenol thing is sort of new. And it might be, I’m not sure that the course of these arguments — I think that Tylenol is easier to counter than some other things, because partly just we do feel safe with it. 

Carey: All right. We’re going to take a quick break. We’ll be right back. 

We’re back and talking about how the Trump administration is managing the voters behind the Make America Healthy Again, or MAHA, movement, which helped President Trump win the 2024 election. My colleagues Stephanie Armour and Maia Rosenfeld wrote about the administration’s recent decision to give coke oven plants in the U.S. a one-year exemption from tougher environmental standards. And that was a move that angered some MAHA activists who wondered if the GOP is more beholden to industry than the MAHA agenda. President Trump, HHS Secretary Kennedy, and other top administration officials met recently at the White House with a group of MAHA leaders to calm concerns that the administration is moving too slowly on food policy changes, and they are concerned about the president’s recent support of the pesticide glyphosate. According to press reports, the MAHA folks seem to feel their concerns were heard during that session. But is this ongoing conflict between the president and this key political constituency, will it be one that keeps brewing as the midterm elections approach? 

Edney: Yes, 100%. I think it will continue to brew. I think that meeting was thrown together so quickly that some members of the MAHA movement who were invited couldn’t even make it. So it wasn’t exactly a long-planned, seemingly deep desire to fix everything. But it was, as you’ve said, an effort to kind of hear them out and make them feel heard. No one that I’ve talked to has said everything is fixed now. It’s more of a to-be-determined We will see what the administration will do moving forward, if they will listen to any of our plans — which we will not share with you, by the way — to make us happy. And I think that that’s going to continue. There’s a rally planned in front of the Supreme Court on glyphosate later this month where a lot of those people will be, and so I think that they’re upset and they’re stirring up, that concern is only going to get stirred up more. 

Carey: Emmarie. 

Huetteman: It’s a small thing, but our fellow podcast panelist Sheryl Stolberg at The New York Times during this White House meeting where President Trump was meeting with MAHA leaders, one of the leaders made a joke about how this is not a group that’s going to be, quote, “Team Diet Coke,” and the president apparently took that as a cue to press that Diet Coke button he famously has on his desk and summon a server who apparently brought him a Diet Coke. Supporters of MAHA have been clear that they want not just for the Trump administration to promote policies supporting priorities like healthy eating and removing food dyes, but also they want them to rein in or end policies they don’t support. And that weed-killer executive order, that really was a big example of that. The MAHA constituency made it clear that they felt betrayed by that order, and they’re going to have to do some work to walk that back. 

Carey: We’ll also see how, with their concerns about the new CDC director nominee, which they’re already voicing, we’ll see how that plays out. 

Kenen: No, I just think that we are, as we mentioned at the beginning, we’re seeing cracks, right? We’re seeing — none of us are privy to any conversations that President Trump has had privately with Secretary Kennedy. But his, Secretary Kennedy’s, public statements have been a little different than they were a few months ago. There’s certainly been reports that he’s been told to soft-pedal vaccines and talk about some of the things that there’s more unanimity across ideological and party lines. Healthier food — there’s debate about how to, whether, there’s debate about how Kennedy defines healthier food. But in general, should we eat healthier? Yes, we should eat healthier. Should our kids get more exercise? Yes, our kids should get more exercise. Do we have too much chronic disease? Yes, we have too much chronic disease. So they’re sort of this, trying to move a little bit more, sort of this sort of top line, very hazier agreement. But at the same time, the people who are sort of really the core of MAHA, as Kennedy has sort of created it or led it, there’s cracks there. 

Carey: All right, we’ll see. We’ll see where that goes. But let’s go ahead and move on to ACA enrollment. A found that 1 in 7 people who signed up for an Affordable Care Act plan failed to pay their first month’s premium. The analysis from Wakely consulting group found that nationally around 14% of those who enrolled in ACA plans didn’t pay their first bill for January coverage. Now we know the elimination of the enhanced ACA tax credits and higher premium costs led to lower enrollment in the ACA exchanges, with sign-ups for 2026 falling to 23 million from 24 million a year ago. But how do you interpret this finding that 14% of enrollees didn’t pay their January premium? Is it a sign of more trouble ahead? 

Edney: I think it could be a sign of more trouble ahead. Some — what we’re seeing is sticker shock. And there may be some people who are trying to deal with that and won’t be able to as the months go on. And so, yeah, I think it could mean that even more drop out, and that means more people lose coverage and are uninsured. 

Kenen: I think there was sort of a general, initial, misleading sigh of relief when in December, when the enrollment figures, the drop wasn’t as bad as some feared. But at the same time, people said: Wait a minute. This doesn’t really count. Signing up isn’t the same thing as staying covered. The drop in January was significant, we now know. And I agree with Anna. I think we don’t know how many more people will decide they can’t afford it. Or we don’t know whether the big drop is January. Probably a lot of it is, because you get that first bill. But can, will more people drop? Probably. We have no way of knowing how many. And it also depends on the economy, right? If more people lose jobs, right now it’s still pretty, kind of still pretty stable, but we don’t know what’s ahead. We don’t know what’s going to happen with the war. We don’t know many, many, many — we don’t know anything. So the future is mysterious. I would expect it to drop more. I don’t think, I don’t know whether this is the big drop or February will be just as bad. I suspect January will be the biggest. But who knows? It depends on other outside factors. 

Huetteman: We’re also seeing a drop-off in the kind of coverage that people are choosing. That analysis that you referenced, Mac, showed that there was a 17% drop in silver plan membership, with most of those folks switching to bronze plans, which, in other words, that means they switch to plans that have lower monthly premiums but they have higher deductibles. And that means that when you get sick, you owe more, in some cases much more, before your insurance starts picking up the tab. And I think really what this means is people are more exposed to the high charges for medical services, bigger bills when you get sick. I think that 

Kenen: I think that the Republicans were seen as having pushed back a lot of the health impacts of the so-called One Big Beautiful Bill and that it would be after the election. And I and others wrote: No, no, no, no, no. We’re going to see this playing out before the election. This is a really big political red flag, right? This is a lot more people becoming uninsured, which makes other people worried about their insurance and stability. So I think this is definitely going to — it may not be. There are other things going on in the world. Health care may not be the dominant theme in this year’s election. But yes, this is going to be, the off-year elections are going to be health care elections, like almost every one else has been for— 

Carey: Oh yeah. 

Kenen: —since the Garden of Eden, right? 

Carey: Absolutely, it’s a perennial. All right, we’ll keep our eye on that. That’s this week’s news. Now we’re going to play Julie’s interview with immigration attorney Michelle can arrow, and then we’ll be back with our extra credits. 

Julie Rovner: I am pleased to welcome to the podcast Michelle Canero. Michelle is an immigration attorney from Miami and a member of the board of Immigrants’ List, a bipartisan political action committee focused on immigration reform. Michelle, thanks for joining us. 

Michelle Canero: Thank you for having me. 

Rovner: So, we’ve talked a lot about immigration policy on this podcast over the past year, but I want to look at the big picture. How important to the U.S. health care system are people who originally come from other countries? 

Canero: I think the statistics speak for themselves. One in three residency positions can’t be filled by American graduates alone. That means 33% of these residency positions are being filled by immigrant workers. Twenty-seven percent of physicians are foreign-born. Twenty percent of hospital workers are immigrants. And, at least in Florida, a large percentage of our home health care workers happen to be immigrants. And we depend on this population heavily in the health care sector. 

Rovner: Now, we talk a lot about the Trump administration’s crackdown on illegal immigration, but we talk a little bit less about their sort of messing with the legal immigration system. And there’s a lot going on there, isn’t there? 

Canero: There is. And I think that the campaign talking points were illegal immigration but what we’re actually seeing is a little more sinister. I think that the goal of leadership at the head of DHS [the Department of Homeland Security] and DOS [the State Department], or really Stephen Miller, is pushing something called reverse migration, which is really not about limiting illegal immigration but reducing the immigrant population in the United States. And I think that’s where the real concern is and why you’re seeing these policies that directly affect legal immigrants. 

Rovner: We talk a lot about doctors and nurses and skilled, the top skilled, medical professionals who make up a large chunk of the United States health care workforce. We don’t talk as much about the sort of midlevel professional workers and the support staff. They’re also overwhelmingly immigrant, aren’t they? 

Canero: Yeah, and whether it’s your IT- and technical-knowledge-based workers in hospitals who facilitate all the technology — we rely on an immigrant workforce for a lot of the technology sector. And then you’ve got research professionals. A lot of clinical researchers, medical researchers, are foreign-born. So it’s not just about the doctors. It’s also the critical staff that keep the hospitals operating. And I’m from Florida. For us, it’s the home health care workers. We have an aging population, and a large percentage of the home health care workers, particularly in Florida, happen to be Haitians on TPS [temporary protected status] or people with asylum work authorizations. And when we lose that, our aging population is left with no resources, because that’s not something AI or technology can fix. You can’t turn someone over in a bed with a robot yet, and we’re probably decades away from that. 

Rovner: So what’s the last year been like for you and your clients? 

Canero: I think it’s a lot of uncertainty. A lot of these policies are percolating, and we’re assuming that they’ll be resolved in litigation, but the damage is being done in real time. So we’re seeing hospitals turning away from hiring foreign workers, because of the H-1B penalty now. The suspension of J-1 processing created backlogs. These visa bans that affect 75 countries on certain visas and 39 countries on others. You’ve got thousands of health care workers that are stuck outside the U.S. So what’s happening, really, is that hospitals and medical providers are just shutting down, and they’re cutting back services, and that means that there are less available services and resources for the same population and the same demand. People are waiting longer for doctor’s appointments. People are finding that they’re not able to get to the specialist that they need to get to in time. And so for us as practitioners, I think, we’re trying to navigate as best we can, but we’re just seeing a lot of people, employers that traditionally would rely on our services, give up and foreign workers looking to go elsewhere. 

Rovner: I noticed during the annual residency match in March that it worked out, I think, fairly well for most graduating medical students. But the big sort of sore thumb that stuck out were international medical graduates. That’s going to impact the pipeline going forward, isn’t it? 

Canero: From what I understand, it takes like seven to 15 years to get to that level, and we just don’t have the student body to meet the demand of residency positions. From my understanding, there’s a gap between American graduates and the demand for residents that’s usually filled by foreign workers. And if we don’t have those foreign workers, those residency positions just don’t get filled. And that becomes more expensive for hospitals, and that transfers to our medical bills. 

Rovner: And people assume that, Oh well this doesn’t impact me. But it really impacts all patients, doesn’t it? And I would think particularly those in rural areas, which are less desirable for U.S.-born and -trained medical professionals and tend to be overrepresented by immigrants. 

Canero: Yeah, I think a lot of the J-1 doctors and H-1B doctors are what facilitate, are working at, our veterans hospitals and our rural medical facilities. And what’s ending up happening is the very same people that this administration touts to support their interests are being forced to travel farther for specialists, right? If there isn’t an endocrinologist in your area, you may have to drive 100 miles to go see that specialist, and you may forgo necessary medical care because of the inconvenience or the cost. And I think that’s hitting at our health. 

Rovner: So you’re on the board of Immigrants’ List, which is working to change things politically. What’s one change that could really make a big difference in what we’re starting to see in terms of immigration and the health care workforce? 

Canero: Well, asking Congress to actually do something. It’s been a problem for decades. So I don’t really know, but I think there’s a couple of things, whether it’s just policymakers supporting our fight against some of these illegal policy changes in courts, organizations supporting us with amicus briefs. For example, there’s a lot of lawsuits challenging these visa bans and these adjudicative holds and the H-1B fine. The more support that the plaintiffs in the litigation get, the more likely we are to resolve that through the court system. And then I hope that there’s enough pressure from hospitals and organizations that have real dollars that impact these elected officials to get them to start seeing, Hey, we need to pass reasonable immigration reform to address some of the loopholes that this administration is using to cause chaos in the system, right? They’re able to do this because we have a gap. We allow them to terminate TPS. We don’t have a structure to ensure that a community that’s been on TPS for 20 years gets grandfathered into some sort of more stable visa. We don’t have a system that precludes the administration from just putting a hold or a visa ban on nationalities. So it’s something that Congress is going to have to step up and do something about. 

Rovner: What worries you most about sort of what’s going on with the immigration system and health care? What keeps you up at night? Obviously you, I know you work on more than just health care. 

Canero: I think my concern is that the American people aren’t seeing what’s happening, or they’re sort of turning a blind eye to it, and by the time it starts to actually impact them and they start asking, Wait, wait, wait. Why is this happening? I don’t understand, it’s going to be too late. Because it’s not hitting their pocket, because it’s not their suffering at this point, they’re not standing up and saying, Hey, this needs to stop, at the level that we need, opposition, to make it stop. And by the time it does hit their pocket and it does affect them directly, I think, it’ll be a little too late. I think people will be scared off from coming here, people that we needed will be gone, and to reverse the system is going to take decades. 

Rovner: Michelle Canero, thanks again. 

Canero: No, you’re very welcome. Thank you for your time. 

Carey: OK, we’re back. Now it’s time for our extra-credit segment, and that’s where we each recognize a story we read this week and we think that you should read it, too. Don’t worry if you miss it. We’ll post the links in our show notes. Joanne, why don’t you start us off this week? 

Kenen: Well, this is by Teddy Rosenbluth in The New York Times. The headline is “” This is one of those stories where you know exactly how it’s going to end in the first paragraph, and yet it was so compellingly and beautifully written that you kept reading until the last word. It is, as the headline suggested, a young man who is an expert on AI and cognitive science named Ben Riley discovered that his father had been lying about a controllable, treatable form of leukemia. He had denied treatment, he’d refused treatment, he had ignored his oncologist because he was relying on AI. And as we all know, AI has its up moments and its down moments. And he was getting incorrect information, distrusted the diagnosis, refused treatment, getting sicker and sicker and sicker as the oncologist and the family got increasingly desperate. And the son, Ben Riley, had, like, skills. He knew how to find scientific evidence, and his father just would not believe it. And by the time his father finally consented to treatment, it was too late, and he did die. And his father was a neuroscientist, a retired neuroscientist, but he found a neuroscience rabbit hole. 

Carey: That’s amazing. Anna, what’s your extra credit? 

Edney: Mine, I’m highlighting a story that I wrote in Bloomberg called “.” And this is, I wanted to dive into this policy that the FDA had implemented. The commissioner has long talked about and felt that perimenopausal and menopausal women were not getting access to the treatments that maybe they really needed, because there had been sort of this two-decade-old study that had showed there were some safety issues regarding breast cancer and cardiovascular disease, but the issue being that those studies had looked at older forms of the medication and also at women who were much older than those who might benefit from taking it. And so they, the agency, asked the companies to remove those warning labels, at least the strongest ones. And what we’ve seen, why — I wanted to dive into the numbers specifically. Bloomberg has some prescription data that was able to help me out here and just look at when this started rising. You could see that the prescriptions started going up around 2021. I feel like a lot of influencers, a lot of celebrities, were talking about this. And then in 2024 to 2025 when the FDA started talking about this, it really just goes, the prescription numbers just go straight up on the scale. And so there were about 32 million prescriptions written last year, which is a huge increase. And I just dove into some of this, some of the companies, what kind of drugs there are out there, and talked to some women who are benefiting but also, because of this pop, experiencing shortages, because the companies aren’t quite keeping up with the products. 

Carey: Wow, that sounds like an outstanding deep dive. Thank you. Emmarie. 

Huetteman: Yeah, my extra credit is from my colleague at ºÚÁϳԹÏÍø News who covers health technology. That’s Darius Tahir. The headline is “Your New Therapist: Chatty, Leaky, and Hardly Human.” The story looks at the proliferation of AI chatbot apps that offer mental health and emotional support, particularly the ones that market themselves as, quote-unquote, “therapy apps.” Darius counted 45 such apps in Apple’s App Store last month, and he uncovered in some cases that safety and privacy concerns existed, such as minimal age protections. Fifteen of the apps that he looked at said they could be downloaded by users who were only 4 years old. His story also explored the tension between the risks of sharing sensitive data and the interests of app developers and collecting that data for business purposes. It’s a good read. All right, 

Carey: All right. Thanks so much. My extra credit is from Politico, and it’s written by Alice Miranda Olstein, and she’s a frequent guest here on What the Health? The headline is, quote, “,” close quote. The headline kind of says it all. Alice writes that Nebraska is racing to implement Medicaid work requirements by May 1, and that’s eight months ahead of the national deadline that was set by the One Big Beautiful Bill Act. Nebraska state officials plan to do this without hiring additional staff, even as other health departments in other states prepare to bring in dozens, if not hundreds, of new employees. Alice writes that advocates for people on Medicaid fear that this rush timeline and lack of new staff will cause many problems for Medicaid beneficiaries who are just trying to meet those new work requirements. 

All right. That’s this week’s show. Thank you so much for listening. Thanks, as always, to our editor and panelist Emmarie Huetteman, to this week’s producer and engineer, Taylor Cook, and to my KFF colleague Richard Ho, who provided technical assistance. A reminder: What the Health? is now available on WAMU platforms, the NPR app, and wherever you get your podcasts, as well as, of course, kffhealthnews.org. Also, as always, you can email us with your comments or questions. We’re at whatthehealth@kff.org. Or you can find me on X, . Joanne, where can people find you these days? 

Kenen: and , @joannekenen. 

Carey: OK. Anna? 

Edney: and and , @annaedney. 

Carey: And Emmarie. 

Huetteman: You can find me on . 

Carey: We’ll be back in your feed next week. Until then, be healthy.

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. About a dozen years ago, Nicole Wipp was trying to spend less time running her law firm and more time with her son, who was in preschool. ?It was a work in progress. 

And then she started feeling— a little off. ?Tired. Out of breath. Her doctor thought it was stress.

Nicole didn’t think so, but she soldiered on. And got worse. For months. Until one day— when she told her husband she just couldn’t get off the couch — he was like, you’re going to urgent care. An x-ray showed her whole left lung totally blacked out.?

 Next stop, emergency room. 

Nicole Wipp: They put a huge needle and shoved it into my back and drew out two liters. Imagine a whole two-liter of pop – I’m from Michigan, so I say pop – from your body. They draw a whole two-liter of liquid. And I felt so much better immediately. I was like, wow, I can breathe. Like, wow, this is so cool. But, um, it was sort of horrifying.

Dan: Nicole says she eventually got diagnosed with a rare lung condition

Nicole Wipp: It’s called lymphangioleiomyomatosis — LAMB for short.

Dan: But not before she’d spent a month in hospitals — hospitals, plural — and had multiple expensive surgeries.

Nicole Wipp: Minimum — my husband and I tried to like tally it all up, like look at all the bills afterward — and it was, minimum, a half a million dollars. 

Dan: Which, because her husband’s job at the time provided good health insurance, didn’t break them.

Nicole’s condition hasn’t bothered her for years. But it’s not cured. It’s incurable.

And yet. This year, Nicole and her husband didn’t sign up for health insurance.

For more than 20 million people on Obamacare plans, the price of health insurance changed dramatically this year. Premiums skyrocketed just as subsidies got sharply reduced. 

Some people faced horrifically stark new circumstances: 

People who needed insurance to cover ongoing treatment: for cancer, for diabetes — treatment they literally could not live without — saw premiums jump by thousands of dollars a month, more than they could possibly afford.

And millions more got stuck taking gambles. Making messy, unsatisfying choices. 

Our partners at ºÚÁϳԹÏÍø News have been talking with lots of those people. 

They introduced us to Nicole. She and her husband could have paid for health insurance. But when rates went up, they did the math and decided not to. They’re generally healthy, and honestly have more financial cushion than most people. 

If they need medical care — ordinary medical care, anyway— they think they’ll be better off just paying cash. 

But they know they’re gambling: that 2026 won’t be the year Nicole’s condition flares up, or that some other catastrophe hits.

Our pals at ºÚÁϳԹÏÍø News also introduced us to this man:

Noah Hulsman: My name’s Noah Hulsman. I own and operate Home Skateboard Shop here in Louisville, Kentucky.

Dan: It’s Louisville’s only skateboard shop. It’s kind of a family business, kind of a community center, kind of a place Noah’s spent most of his 37 years. 

Noah’s still paying for insurance — paying for  protection against catastrophe. But because all he can afford this year is a bare-bones plan, he doesn’t have a way to pay for ordinary medical care. Which he could actually really use. 

Noah Hulsman: So I’m kind of in a position right now… I need my left shoulder looked at, but I have an $8,400 deductible. Yeah.

Dan:  We’ll get into that — it sucks. But first: I really want you to hear about this skateboard shop.

Noah Hulsman: When I tell the story, it almost seems like a movie or something. Like, somebody made this up.

Dan: Let’s go. 

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 here is to take one of the most enraging, terrifying, depressing parts of American life, and bring you a show that’s entertaining, empowering, and useful.

Here’s how Noah ended up a skater for life.

Noah Hulsman: So my grandmother, she opened up a skateboard shop in 1988 here in Louisville. It was called Skateboards Unlimited. She had a little skate park also behind it called Ottoman Skate Park.

Dan: Noah’s grandmother was not a skater. She’d been a nurse — but she had five kids, and Noah says she ended up more of a stay-at-home mom.

Noah Hulsman: And then with all the commotion that was always occurring, with all the friends in and outta the house, with having five kids and all these skateboarders that just started popping up, she just decided, you know what? Let’s like have a place for you all to go.

Dan: She opened Skateboards Unlimited — and a skate park behind it.

When her youngest son finished high school — and moved to the West Coast as a professional skateboarder — it was the end of an era. And the beginning of another. 

Noah’s grandma closed up Skateboards Unlimited. 

Noah Hulsman: And uh, that’s when one of her employees was like, you know what? We gotta keep having a skate shop. 

Dan: They called it Home Skate Shop. Noah became a regular customer, eventually an employee. And — ten years ago, when he was 27, — he took over the business. 

Noah is as invested as anybody could possibly be.

Noah Hulsman: It’s everything. It’s my whole life. Yeah.

Dan: It’s doing OK. There were a few rocky years early on — Noah says he qualified for Medicaid. But things actually picked up when the pandemic started.

Noah Hulsman: Skateboarding was one of the only things that you do by yourself. You’re doing it outside. If I would’ve been able to get a hold of more product, we would’ve, we would’ve killed it.

Dan: Noah got an Obamacare plan, and he even bought a building — he leases out a couple of apartments, runs an air bnb in a third one, and says he breaks even on it, right now..

Noah Hulsman: They say, you know, real estate is a long term game.

Dan: Noah’s a long-term kind of guy.

\He and his girlfriend have been together for 16 years — even while she was away at veterinary school.

Noah Hulsman: She just finished up at Auburn this past year and moved back home and yeah, it’s been awesome.

Dan: Now they live together — with their four cats — in an apartment less than a mile from where his grandma started her skate shop.

But it’s not a cushy living. Noah says he takes odd jobs and gives skateboarding lessons to make ends meet.

Noah Hulsman: Every single day is a hustle. There is no day, like you can’t get sick, you can’t be–  no downtime. If you take vacations, you’re still working from your phone, you’re checking in on the shop.

Dan: Noah says his income — all in — has been holding steady at around $33,000 a year. Last year, with a subsidy, he was able to get a gold plan for about a hundred and five dollars a month.

For 2026 — with premiums jacked up and subsidies cranked down — that gold plan would have cost him an extra $500 a month. That’s $6000 a year. Way more than he could afford.

Instead, he picked a Bronze plan. It leaves him paying pretty much exactly the same every month as he did last year, but it covers so much less.

Noah Hulsman: I don’t even know why I’m paying that. It’s useless really, unless I get into a car accident and I have $10,000 worth of bills.

Dan: Or a skateboarding accident. Or a serious illness. Anything.

He’s holding onto the plan as a backstop against a worst-case scenario, against ending up with more debt than he could ever pay back.

But having a backstop is not the same as having access to medical care.

A few months ago, Noah says his left shoulder started bothering him. He says it doesn’t stop him from day-to-day stuff, running the shop. But it does impose limits. 

Noah Hulsman: It’s those like quick movements. It’s those like blast-off times like when I’m popping on my skateboard or when I’m like turning a certain like front side and like throwing all my weight that way. 

Dan: His bronze plan — with its $8400 deductible — means he can’t afford to get it checked out.

Noah Hulsman: To go through, okay first you have to go see primary care, then they gotta do the x-ray. Then once you see the x-ray, oh, we can’t tell anything from the x-ray. Yeah, we know because it’s ligaments and tendons and muscles and things like, I’m not a doctor, but I’ve been through this a few times. So, okay, we’re gonna get you the MRI. All right. Here’s the MRI. None of that’s gonna be covered.

Dan: It sounds like thousands of dollars to Noah — to me too, really. And that’s before getting it treated, which could mean surgery.

Noah doesn’t have thousands of dollars lying around. If he did, he would’ve paid up for the gold plan. 

So he’s avoiding tricks that could irritate the shoulder,

Noah Hulsman:  I can still skateboard. I just have to choose what tricks or what obstacles. I don’t have like the freedom that I had when I used to ride my skateboard.

Dan: He’s hoping he can nurse the injury along till next year, when he thinks he could afford better insurance. 

Noah Hulsman: What I’m kind of planning on doing is my, my shop vehicle is about to be paid off next year or like at, at the, I think it’s like middle of next year. And that payment is basically what that gold plan payment is.

Dan: Yeah, yeah,

Noah Hulsman: That’s what’s probably gonna happen. That’s my new car payment. New shoulder payment.

Dan: Man, that super sucks. I mean, grimly hilarious 

Noah Hulsman: Yeah. Yeah. I mean, if this, you have to just laugh at how ridiculous the world is these days. There’s, I mean, if you just take it serious, doom and gloom all the time, it’s going to, you’re not gonna make it. You gotta just laugh these days. It’s so ridiculous.

Dan: It is. Noah is far from alone. A Gallup poll taken in late 2025 found that more than a quarter of all Americans had postponed surgery or medical treatment because of cost.

Being insured and having access to medical care — for lots of people, they haven’t been the same for a long time.

This year, especially for people using Obamacare, that’s accelerating. 

We don’t know yet how many people made choices like Noah’s, and moved to plans that cover less, in order to have a monthly payment they could kind of afford.

Federal numbers won’t be out for a while. But an analyst named Charles Gaba ran some preliminary numbers from a few states.

He found that the number of people in Silver and Gold and Platinum plans was down significantly. And the number of people in Bronze plans, the cheapest, was up dramatically.

And we do know that at least a million people have dropped Obamacare. Some have dropped insurance altogether. Including, of course, Nicole Wipp.

We’re coming back to her story, just ahead. 

This episode of An Arm and a Leg is produced in partnership with ºÚÁϳԹÏÍø News. That’s a nonprofit newsroom reporting on health issues in America. The reporters at ºÚÁϳԹÏÍø News do amazing work — win all kinds of awards every year. And in a little while, you’ll meet the KFF reporter who introduced me to Noah Hulsman and Nicole Wipp.

Dan: Before Nicole Wipp knew that her Obamacare rates would be going up, she knew she was pissed at what she calls the insurance industrial complex. 

Nicole Wipp: So my son. Just for example, we took him— called in advance, ‘do you take our insurance?’ Took him to get basic well child vaccines. Well, next thing I know, I got a bill for $4,000. I called them up and was like, what is this? 

Dan: She says that was early 2025, and she’s been fighting ever since. 

Nicole Wipp: They’ve cut it down to like 1200, but I’m like, no, no, no, no, no. It should be a hundred percent covered under our insurance, So that’s the thing is like, why would I participate in this?

Dan: And at least since her half-a-million-dollar medical adventure Nicole Wipp has been pretty determined to live life on her own terms.

Even before her illness, she had already been trying to spend less time running her law practice and more time with her family.

Then, after the illness, she more than doubled down on that. On her website, she says she went from working 80 hours a week to working just five days a month.

That’s the website for a new business she started after her recovery: a consulting and coaching practice that offers to help people achieve financial success on their own terms. 

Nicole Wipp: Financial success for me is very much not just about money, it’s really more about quality of life and having enough money to have that quality of life.

Dan: So, for instance, about four years after her illness, Nicole’s family moved from Michigan to Hawaii.

Nicole Wipp: We said, we want to live in Hawaii because we wanna have a quality of life. And of course, living in Hawaii is not cheap. It’s one of the most expensive places in the United States to live.

Dan: But that’s what they wanted. And they made it work. 

And then their son got into polo. Like, with horses. Which is harder to do in Hawaii— to do seriously, competitively — without a lot of traveling to the mainland. So they moved again, to South Carolina.

Nicole Wipp: And we did, by the way, when we moved back to the mainland, FedExed four horses from Hawaii

Dan: Oh my God.

Nicole Wipp: I know, and like when you say, all these things, it sounds insane, right? It is insane. 

Dan: Since then, she says they’ve picked up another four horses.

Nicole Wipp: Now we have a total of eight, which is a lot, a lot by the way. Um, and so, you know, I say it out loud and I’m like, oh, I’m not proud of this, to be honest with you. But, but we have also though made other choices like we live in a smaller home than we would otherwise, so that we can do that.

Dan: And that home is in a part of South Carolina where houses aren’t super- expensive. So Nicole says the mortgage on their house is less than the $1400 they would’ve been paying if they’d kept their insurance this year. 

The expensive horses, the less-expensive home…

Nicole Wipp:  Like these are choices that we’ve made as a family that I understand very much that most people would never make these choices, but we’re doing it in as responsible of a fashion as we possibly can.

Dan: A few years ago, her husband changed careers— no more job-based health coverage. They started buying insurance on the Obamacare exchange.

But by mid-2025, it started looking like that insurance could get a lot more expensive. Not because they’d lose a subsidy — they hadn’t qualified for a subsidy to start with. 

But if subsidies went away, she figured rates would go way up.  

Nicole Wipp: I started bringing it up to my husband. Like, I don’t know what this is gonna look like. I’m very worried about it. And we may be in a situation where we need to make a choice 

Dan: Could they contemplate doing without insurance?

Nicole Wipp: And so we had probably, you know, 20 conversations, at least, about it.

Dan: Before making a decision — even before 2026 rates got posted — Nicole and her husband started taking some steps. She scheduled a colonoscopy, and went to the dermatologist for a skin check. Her husband got some tests too.

If they didn’t have insurance next year, those tests wouldn’t be covered. And if any tests came back with scary results, insurance would be more important.

Obamacare premiums for 2026 got published. Their family’s rate would go up by about 50 percent. 

Nicole Wipp: Once the numbers came out, I was like, I just don’t know if this makes sense.?But we were like, okay, we need to gather more information. We need to think about it some more. 

Dan: Their tests had come back OK. And they felt fine. Maybe they wouldn’t need any medical care in 2026, or not much. But maybe they would. How might they pay the bills? They kept talking. And they identified some ideas.

For one thing, Nicole found some money socked away in a health savings account from her husband’s old job. 

Nicole Wipp: It’s not a lot, but it was like, oh, that’s a nice little cushion. Like we could use that if we needed it. 

Dan: Nicole figured, if they were paying cash, she’d be in a good position to negotiate with providers for discounts. 

Nicole Wipp: Because I’m a lawyer and I’ve been around the block on these things, so I had a lot of faith that I could negotiate a bill.

Dan: And she had other ideas for finding deals. 

Nicole Wipp: I was like, you know, depending on what the situation is, we could fly to another country, receive healthcare quality healthcare. It still would be less. And I am not above doing that.

Dan: And if all of that required more cash than they had lying around, Nicole figured, they still had options. 

Nicole Wipp: We have certain assets that in an extreme emergency we could sell – I mean, because it’s not just the horses. We have horse trailers and like, you know, there’s a lot that goes along with all of that that isn’t just the horses by the way.

Dan: None of which made the decision easy. Nicole says she and her husband didn’t fully decide until the actual deadline came for signing up. Even then, they knew they were gonna keep their son insured.

Nicole Wipp: I would be in my opinion, not responsible as a mom, so… because he does play a very dangerous sport.

Dan: But for the adults, they weighed the risks, and decided to gamble.

Nicole Wipp: If I take that money and invest it instead of putting, I don’t know, am I gonna be out further ahead? I will if I don’t have a massive emergency and a half a million dollar illness. Um, right? And so it’s a gamble, like, right? All of this is a gamble, but it was a gamble that I was like, I just don’t want to participate in this any longer because this is not workable for almost anybody, but it certainly isn’t workable for me anymore mentally or emotionally.

Dan: Not workable for almost anybody. 

[Music transition]

Renu Rayasam: I mean, I also think about this as a reporter. We have these individual stories. What do they mean? First of all, why is this system like this and what does it mean for everyone?

Dan: That’s Renu Rayasam. She’s a senior correspondent with our partners at ºÚÁϳԹÏÍø News. She introduced me to Nicole and to Noah. She and her colleagues have been talking with dozens of people about the choices they’ve been forced to make about insurance this year.

?And thinking about what those individual stories mean has led Renu to some big reflections. 

Renu Rayasam: I think sometimes in the US you take for granted the way things are. Just you don’t, you don’t realize there is another way, you know? There is another way! And um, and that’s where everybody has health insurance and those costs are better spread out. 

Dan: Renu is speaking in part from experience. She spent a half-dozen years living in Germany. We talked about her experience— and how it affects the way she sees stories like Nicole’s and Noah’s. 

Renu Rayasam: ?Well first of all, it was kind of amazing to like never get a medical bill. Like that was like, like so mind blowing that you just, like, you go to the doctor and you never get a bill. 

Dan: Not because the government pays for health care. But because the government requires everybody to have health insurance. 

Renu Rayasam:  People pay premiums. ?You have to pay into the system. And it’s not necessarily cheap either.??But then on the back end, you’re never worried about, oh, my shoulders hurt, I have to get this MRI and I’m gonna get a bill.

Dan: ?Most people pay a government-set rate — about 15 percent of their income. Most insurance funds are non-profit. Everything’s highly regulated, and everybody gets the same benefits. Here, things are … more chaotic. Less predictable. People have to make hard choices— and those choices feed back into the chaos. 

Renu Rayasam: So if somebody like Nicole opts out of health insurance, they’re not paying into this system and the people who are paying into the system are people who need care. And so that makes health insurance more expensive generally. 

Dan: Because insurers set their rates based on how much they expect to pay out. When healthy people bail, the rates go up. And when rates go up, healthy people bail. They reinforce each other. It’s what experts call a death spiral.

As some of those experts told Renu, a version of that happened over the last year. ?It wasn’t a coincidence that insurers jacked up prices when subsidies were on the chopping block. 

Renu Rayasam: Part of the reason that insurers raised their prices was because they expected people to drop plans and that fewer people would be paying their premiums and be paying into the system.

Dan: And people like Nicole and Noah ended up with lousy choices to make. 

Noah chose to keep paying for insurance as a backstop against absolute financial catastrophe — even though the insurance he can afford doesn’t give him access to medical care he needs. 

Nicole and her husband think they’ve got the resources to pay for ordinary medical care. Even maybe a big medical deal — as long as there was time to hop on a plane and get to a country where they could afford treatment.

But they’re not protected against the worst. Nicole knows bankruptcy is a real possibility. 

Nicole Wipp: We don’t have a guarantee. And it still weighs on me every day that I made this choice because it feels fraught. Do I regret it? No, not at the moment. I don’t. Will I regret it? I hope not.

Dan: Hmm.

Nicole Wipp: I don’t know though.

Dan: Yeah, you’re not like, I did it. I’m free, you know, this is the best. It’s like, no, you’re not free of it.

Nicole Wipp: No, I don’t feel free at all.

Dan: I wish I had a snappier ending to this story. We are more stuck than ever — all of us — making messy choices, hoping for the best. So I’m gonna give Noah the last word here. 

He’s taking his own advice: Taking things as they come, recognizing what’s ridiculous, and aiming to hang in there for the long term.

Noah Hulsman: ?Hopefully we, you know, get enough equity in this building that once it’s time to pass the skateboard shop on, maybe sell the building and hopefully that’s when we get to maybe cash out and go to the beach. 

Dan: Wow. 

Noah Hulsman: ?Maybe. Or maybe I’ll just get to pay off my medical debt that I’ve accrued over however many years at that point.

Dan: We’ll be back in a few weeks with a new episode. Till then, take care of yourself. 

This episode of An Arm and a Leg was produced me, Dan Weissmann, with help from Emily Pisacreta — and edited by Ellen Weiss. 

Adam Raymonda is our audio wizard.

Our music is by Dave Weiner and Blue Dot Sessions. 

Claire Davenport is our engagement producer.

Sarah Ballema is our Operations Manager. Bea Bosco is our consulting director of operations. 

An Arm and a Leg is produced in partnership with ºÚÁϳԹÏÍø 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 ºÚÁϳԹÏÍø News. He’s editorial liaison to this show.

An Arm and a Leg is distributed by KUOW, Seattle’s NPR news 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.

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 somebody. 

Ron Lieber: I’m Ron Lieber. I write the “Your Money” column for the New York Times. I write all sorts of books, and I live in Brooklyn, New York.

Dan:  Ron’s specialty is beating the system: How to not pay more than you really need to. His most recent book — about paying for college — we’ve practically worn out our copy around my house. 

Now, it’s possible Ron’s not the most prominent journalist in his household. A major Hollywood movie a few years ago had Zoe Kazan starring as Ron’s wife, Jodi Kantor. 

Zoe Kazan as Jodi Kantor: Hi. We’re from the New York Times. I believe you used to work for Harvey Weinstein.

Dan: She was one of the reporters who exposed the movie producer Harvey Weinstein’s history of sexual assault, and helped kick start the Me Too movement. I mean, that’s hard to beat. 

In 2024, Jodi was diagnosed with breast cancer, and she got scheduled for surgery at Memorial Sloan Kettering on a Monday morning in December.

Ron Lieber: And she was doing all the things you’re supposed to do to get ready for surgery. She did the meditation for a week and, you know, she wound down everything at work she went away for a couple days with friends.

Dan: So on Saturday, two days before surgery, Jodi is on that trip with friends. Ron spends the day with their 9-year-old, just the two of them.

Ron Lieber: And we get home and there’s a pile of mail and I put the 9-year-old to bed and I start going through the mail and there is a fat envelope from United Healthcare.

Dan: Ron says he suspects right away that it’s bad news about the surgery.

Ron Lieber: And sure enough it’s, you know, kind of pages of gobbledygook, but it’s clear from the cover page, that they’re issuing a partial denial, in effect, and we have, flunked partially, our prior authorization test.

Dan: Prior authorization. It rings a bell. He does a quick search to get his bearings– and quickly realizes: This is a HUGE phenomenon. It hasn’t hit him personally before, but it hits millions of people every year.

Ron Lieber: So at this point, a whole bunch of stuff goes through my head.

Dan: First, professional embarrassment. Ron’s a personal finance columnist at the New York Times. And he’s thinking: how could he have missed something that causes so much personal financial distress to so many people? 

Ron Lieber: I had that same feeling that I did in 2008.

Dan: When the financial crisis hit and he hadn’t seen it coming. 

Ron Lieber: Back in 2008. It was, you know, Ron, why did you not become an expert on mortgage securitization before now?

Dan: This time, it’s prior authorization. Ron manages to forgive himself pretty quickly on that score– and move on to more pressing concerns.

Ron Lieber: The first thing I gotta figure out is: What am I gonna say to Jodi?

Dan: Is he gonna crash her pre-op mellow she’s worked so hard for? 

And second: How worried should they be?

Ron Lieber: Should we show up on Monday? What’s the worst thing that can happen? And so I’m starting to do mental math, like what’s the rack rate for this procedure anyway, and I’m thinking, eh, probably 150- $200,000. Right?

Dan: Yeah, like real money. This is the point when a lot of people would decide to reschedule surgery. But Ron digs into the paperwork, and he can see this denial is a mistake. United isn’t even denying the reconstructive part of Jodi’s surgery — the part a plastic surgeon does. They’re denying the mastectomy itself.

That’s gotta be wrong. And Ron decides that is not going to stick.

Ron Lieber: These people are not going to win. I am going to win, because I’m Ron Lieber.

Dan: He’s a professional at beating the system. 

Ron Lieber: I’m gonna stand up for my wife.

Dan: And he’s not in this alone.

Ron Lieber: I work for a big company. We have excellent HR people. 

Dan: And he figures the hospital will hold up their end in this fight.

Ron Lieber: I imagine that there are 10, 15, 20 people at Memorial Sloan Kettering who do nothing but deal with nonsense, all day long. So one way or another, we’re gonna win.

Dan: One thing he says knows he WON’T do in this fight: Let on to anybody at the hospital or the insurance company that they should give him special treatment because he, you know, works for the New York Times.

Ron Lieber: We have the strictest ethics code, probably on the planet, right? We get fired for throwing our weight around. The moment you open your mouth at 1-800 United Healthcare and say, I work for the New York Times, stop messing around with me, you lose your job. There’s no second chances.

Dan: He DOES plan on taking notes. Because eventually, this could be a good story.

And I’ll just tell you right now. It was. Ron eventually put his family’s story in the New York Times, looking to help other people avoid — at the least — getting a scary notice that there’s some problem with their insurance with no time to do anything about it.

Hundreds of readers wrote back with their own stories, with suggestions, with complaints.

And Ron responded by coming back to the story with a tool he hoped people — actually people’s doctors — could use to prevent these kind of scary situations, at least some of them.

I freaking love it.

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

Jodi comes home from her trip with friends on Sunday. Surgery is scheduled for the next morning, first thing. Ron tells her the news. She hits the roof.

Ron Lieber: She’s not angry, she’s just sad and she’s stressed all the things that should not happen, right, when you’re going into major surgery. 

Dan: Meanwhile, Ron does what he can to get the insurance thing resolved. Which, on a Sunday, isn’t much. 

Ron Lieber: There’s this stupid appeal form that you can send to a supposed emergency fax line. So, you know, I download E-fax for the first time in 19 years, um, and send the fax off into the ether. Nothing happens.

Dan: Next morning, they show up for surgery, and once Jodi’s under anesthesia, Ron figures he’s got 6 hours to kill, maybe eight.

So he starts roaming the hospital campus, looking for someone who could explain what was up, and what to do.

Ron Lieber: So I was just showing up at desks saying, Hey, check out this love letter I got from UnitedHealthcare.

Dan: And the people at those desks are like, Oh wow– we got one of these TODAY? 

Because Ron and Jodi’s story was playing out against the backdrop of a much bigger story, one that had started just a few days before.

Jessica Tisch: In Midtown Manhattan, early this morning, 50-year-old Brian Thompson, the CEO of UnitedHealthcare was shot and killed in what appears at this early stage of our investigation to be a brazen, targeted attack.

News announcer: Protestors have targeted United Healthcare, which reportedly denies one of every three claims. 

News reporter: CBS news also confirms law enforcement found shell casings at the crime scene with the words deny, defend, and depose written on them.

Dan: Those words – “deny, defend, depose”– they suggested to lots of people that issues like prior authorization played a role in the killer’s motivation. 

And: Police were chasing the suspected shooter– later identified as Luigi Mangione– that very morning. So when Ron shows up at the billing office with his UnitedHealthcare denial…

Ron Lieber: People are like, oh, is he still on the loose? They just, just couldn’t believe that like this thing, you know, that Luigi was clearly upset about, right, was presenting itself in real time while he was still being chased. 

Dan: They also quickly reassured Ron about his immediate situation.

Ron Lieber: The nice woman in the billing office, you know, clicks a bunch of keys on her keyboard and she pulls it up and she said, oh yeah. She said, this isn’t gonna be a problem. She said, it may take a while. But don’t worry about it.

Dan: And she said something else that gets Ron’s wheels spinning.

Ron Lieber: She said, we got notice of this, you know, seven or eight days ago. If we had thought that there was gonna be a problem, we would’ve called you right away and told you not to come.

Dan: Ron was thinking: I sure wish you’d have given us a heads-up — and this kind of reassurance — before now.

Ron Lieber: I’m mad because we didn’t find out about it until 36 hours ahead of time when it was too late to do anything ’cause it was Saturday night and the surgery was Monday morning. So why didn’t you just tell me?

Dan: And he’s thinking: Ok, what’s my next move?

Ron Lieber: There are three voices played simultaneously in my head at a minimum. Number one is I’ve got a personal situation on my hand that I gotta solve, you know, as cheaply as possible. Number two, this is a story and I ought to be taking really careful notes, not just for my own purposes, but to make sure that I’ve documented things correctly and so that I can, you know, make the best case to the reader and, and the best case to the entities involved when it comes time to ask them some questions. And then number three. Try to avoid as best as I can, compromising the story in any way. Right? So like, don’t lose your temper, don’t lose your patience. Try not to even utter the words the New York Times…

Dan: How do you not blow your cover? 

Ron Lieber: Exactly. Right.

Dan: And there’s another thought: UnitedHealthcare is like the day’s top story. It’s coming out that this issue — pre-authorization — seems to be one of the alleged killer’s big issues.

Ron Lieber: So then I have a conversation with my editors while Jodi is still under anesthesia saying, I think I wanna write about this right now. Right? So this is like an hour before they catch Luigi. We’re right on the news here and I think this is the thing that he was upset about and we should just go with it. And my editor correctly said “no.” In order this for this to be, um, a useful story for the reader and to make sure we are 182% in compliance, you know, with our ethical responsibilities, we gotta let this thing play out to its conclusion on its own.

Dan: Ron went back to focusing on what really mattered to him right then. Which was not getting a scoop. 

Ron Lieber: I was not the main character here. My wife was the main character, right? She was sick. We were trying to fix her. It was a big deal. and I was sort of relieved, you know, at two in the afternoon when my editor was basically like, hit the pause button on this thing.

Dan: And there was more relief coming right up.

Ron Lieber: Jodi does great. The surgery’s successful. The surgeons did an amazing job.They were happy. Recovery was perfect. And we feel real good and so I’m sort of watching the mail.

Dan: Waiting for a super-high bill from the hospital. Or some word from United. Weeks go by. Nothing.

Ron does something that I wouldn’t expect — or necessarily advise — any normal person to do, any civilian: He keeps waiting. 

Partly ‘cause he’s super-confident that this will work out, and as a reporter, he’s gathering data: What would the system do, just left to its own devices?

Finally, on March 1st — more than two and a half months after Jodi’s surgery — Ron calls United. He says, ‘Hey, you said in early December that you were denying us, and I faxed you an appeal. I was just wondering: any news?’

Ron Lieber: And they took a look and they said, oh yeah. Um, the appeal on this one just went today to the physician, uh, who’s going to review the appeal. And I said, you guys waited like two and a half months to do that. And they said, yep. Um, uh, and I thought, well, okay.

Dan: Ron gets off the phone. Waits another few weeks before he finally calls again and hears from a United rep: Yep, this seems to be resolved.

Eventually, Ron gets a bill. It’s reasonable. He pays it. And switches to reporter mode.

So Ron the Reporter gets to ask the same questions Ron the Civilian has been asking all along.

Couldn’t someone have given him and Jodi a heads-up earlier?

Ron: Why did you not just tell us immediately, not through the United States Mail, you know, which some people don’t even open and some people don’t get. Why did you not send up some kind of flare? Send us a text. Call us on her phone, send an email, um, do all three at once. Like fly a freaking, you know, banner over Prospect Park saying, ‘Ron and Jodi call UnitedHealthcare right now. You have a problem.’ 

Dan: There’s a whole HUGE set of questions to ask about prior authorization itself — like, why on EARTH would you deny a mastectomy for breast cancer??

But for this story, Ron’s keeping a narrow focus.

Ron Lieber: The conversation I wanna have with UnitedHealthcare is not, you’re terrible. The system is terrible. Prior authorization is terrible. All I wanted to know was, given that we have to live within this system for now, why didn’t you call us?

Dan: The first words of that question– GIVEN THAT WE HAVE TO LIVE WITHIN THIS SYSTEM FOR NOW — rang out so loud for me. Because, God help us, we do.

And it is such a reasonable question: Isn’t giving people a heads-up the LEAST you could do? So, Ron asked. On the record.

Ron Lieber: And here’s what they said. Um, they said, yeah, you know, we know more needs to be done here about prior auth, you know, blabbity, blah, blah. And then they said this: ‘We continue to make our own changes to help members navigate through these types of situations, including by offering the opt-in paperless communications.’

Dan: Opt-in. Like — oh, well. You COULDA opted in. Ron was like: Grr. You trying to say it’s my fault, because I didn’t opt in? He says he kept arguing to the United spokesperson — who he says was a total gentleman — you really should just go ahead and give people notice. He says it didn’t take. 

Ron Lieber: So I thought to myself, okay, UnitedHealthcare doesn’t seem that excited to change their processes 180 degrees and do what I’m telling them to do. 

Dan: And by the way, Ron says he has one idea about why they wouldn’t.

Ron Lieber:  If they sent out the kind of notices that I am suggesting, they would need twice as many phone reps and it would cost them a ton of money. And they actually do not want people calling about this. But then I had another idea about how to work around them.

Dan: And that is coming right up.

This episode of An Arm and a Leg is a co-production between Public Road Productions and ºÚÁϳԹÏÍø News. ºÚÁϳԹÏÍø News is a nonprofit newsroom covering health issues in America. Their journalists win all kinds of awards, every year. We are honored to work with them.

So Ron has another idea about how — if we have to live in a system where insurance companies issue stupefying, horrifying denials of care to millions of people — we don’t have to get the news at the last possible minute.

And it’s this: Maybe our PROVIDERS could help us out here. I mean, they want to treat us. They want to get paid. We’re a natural team.

So there was an obvious question to ask the folks at Memorial Sloan Kettering: the question he’d held back from pressing on the day of Jodi’s surgery.

That’s when the lady from the billing department told him they’d known about United’s denial for seven or eight days. Why didn’t you give us a heads up?

Ron Lieber: And, um, basically their response went like this, well, we just don’t wanna bother patients with this. We only wanna bother them with, uh, what they described as clinically necessary information. But here’s my response to that, right? Pre-surgery, mental health ought to be part of the institution’s concern, right? You want people walking in there with their heads clear, without too much worry, without too much fear.

Dan: And again: Ron didn’t find himself persuading Memorial Sloan Kettering to change their policy.

So when he wrote all this up in a column — in August, more than eight months after Jodi’s surgery — he basically had a couple pieces of advice for readers. 

One: Yeah, if your insurance requires you to OPT-IN to get a heads-up, then… OK, opt in.

And two: If you need some kind of treatment, ask your doctor’s office some questions: Is prior authorization gonna come into play here? Can you start requesting it ASAP, so we can avoid some last-minute scramble? And if you hit any roadblocks, can someone give me a heads-up right away? And if *I* find out about a problem, who in your office should I call?

That column got people’s attention. More than 500 people left comments. Ron says even for the New York Times, that’s a lot. A lot of them were supportive. A lot were from people who’d had much worse experiences than Jodi and Ron.

Ron Lieber: There were multiple notes from people who said, I was sent home the morning of surgery because they cannot work it out. And there was one person who had already had the anesthesia stuck in her arm and they yanked the needle out and had to send her away to come back and try another day. 

Dan: Oh my God.

Ron Lieber: And then there was like a small handful of readers that were basically like, you’re an idiot, right? How did you not investigate the possibility of an insurance denial ahead of time? 

Dan: He thought about giving that advice in a follow-up column: Never turn your back for a minute. Make multiple calls.

But he decided to take a different approach.

Ron Lieber: And I thought, okay, well how could this have been avoided, um, in our situation? Oh, they could have just given us a very plain spoken piece of paper, you know, upon diagnosis or when we scheduled the surgery.

Dan: Something to give them a heads-up that this kind of thing could happen. In his newsletter, he asked readers for suggestions about what that piece of paper should say.

He says he got lots of responses — including from some angry physicians. 

Ron Lieber: Who said to me, who are you to tell me how to run my medical practice? And then, and this was the loudest one. This is not my fault. Why are you putting this on me? And there were just as many doctors who wrote in who said, hey, in case I miss the story, can you send this to me when it comes out? 

Dan: And he got lots of good suggestions. So he published a column with a template for a note doctors could use.

Ron Lieber: It said: ‘Hey, um, here’s what prior authorization is, and here’s how it works. Um, sometimes people run into problems, um, where the insurance company says that they’re not gonna pay for stuff. We don’t want you to worry about this. You can call us here or email us here if you run into these issues, and we will try to take care of it. If you have any questions about this form, please call our billing specialist. We understand that you don’t want to take up valuable exam time talking about this with the doctor. Frankly, our doctors don’t either, but we wanna make sure that you know about this ahead of time.’

Dan: Again, lots of responses. Useful responses.

Ron Lieber: I got incredibly good critical feedback. And I realized that the note could get a lot better.

Dan: For instance, Ron’s initial memo included some grouching about insurance companies, from a doctor’s point of view. For instance:

“Often, a doctor will have to do what’s known as a peer review with someone from the insurance company. We find this burdensome, since the “peer” on the line with us may not have the same level of expertise as we do. That prolongs the call, adds to our overall operating expenses and keeps us from spending more time with you, the patient.”

And although lots of doctors say exactly those things in lots of forums, they don’t do it on hospital letterhead. 

Ron Lieber: There were some doctors who said, uh, There’s no way I could ever get this by our lawyers. Um, you know, nice try, uh, wish I wish I could, but ain’t gonna happen over here. To which I said, send it to your lawyer and have them call me and we can have a conversation about what would pass muster.

Dan: Other readers told Ron the language just needed to be simpler. They’d his note through software that analyzes a piece of text for reading difficulty. 

Ron Lieber: And then wrote me notes and said, this is written at a 12th grade level. And like, my patients don’t speak English at a first language, or they’re never gonna read this, and you need to write it at a fifth grade level. And so I, so I thought, okay, yeah, that’s, that’s pretty good advice.

Dan: Ron digested all the feedback on the memo he’d published.

Ron Lieber: And then I published another one, which was better, right? It was shorter, the language was plainer. I took out the the commentary.

Dan: We’ll have a link to that second version wherever you’re listening to this. If you’re a health care worker — or know some health care workers who might find it useful — please check it out, pass it around.

Of all the comments on Ron’s stories, one that stuck with me was from a reader who made a wish that was actually like a lament– on behalf of anybody who needed major medical care. Anyone in that situation, they wrote, Quote: “should be enrolled in a certificate course for how to navigate the healthcare system.

Ron Lieber: So this is the thing, Dan, right? This is why I have a job and I’m pretty sure this is why you have a job too. And I would love to be put out of business, right? But the way in which I would be put out of business. Is if there were mandatory certificate programs in 25 different categories of personal finance existence, right. And so that’s how I would be put outta business. But because nobody’s ever gonna require such a certificate in, in any of the areas of personal finance that we are forced, um, to wade through as human beings, I have a job and I’m just trying to do a better job of it.

Dan: ?I hear that. There is so much I appreciate about having my job, but I wish it weren’t so necessary. Lots of people end up in much worse circumstances than Ron Lieber and Jodi Kantor. 

In a book called “Coverage Denied,” coming out this spring, University of Pittsburgh professor Miranda Yaver cites estimates ranging from 850 million to 3 billion denials a year. 

She also cites data showing that appeals work more often than most of us think — about half the time. 

But appealing is hard work. The less privilege you have — like, say if you don’t have a flexible schedule to call and fax and everything else — the harder it is.

She calls the result “Rationing by inconvenience.”  

And we can all use all the help we can get making life less annoying and inconvenient. Which is why I’m gonna leave you with Ron Lieber’s answer to my last big question for him. 

Because hearing  one part of his advice on how not to get blindsided by an insurance denial led to another question — one that seemed like a good one to ask an expert at beating the system. 

I said:  Hey, you recommend opting in to emails and texts from your insurance company so they might give you a quicker heads-up. 

Let’s say I do. How the heck am I supposed to find that in my inbox — which keeps getting harder to sort through every day with things I don’t want and don’t need to look at? 

I asked him: How do you, Ron Lieber, manage the inbound?  How do you identify what actually needs your attention?

And he had a good answer:

Ron Lieber: ?Yeah. So I have three email inboxes. I have, you know, work email, I have personal email that is only personal correspondence and the most vital other stuff, you know, kids’ school, uh, college tuition payments. And then I have an old Yahoo email for everything else. And so, you know, I read the last 12 to 24 hours of the Yahoo email, you know, once a day or so. Uh, and then, you know, once a month, I’ll open the inbox and I won’t close it until I’ve unsubscribed to 10 things. And, and so that keeps it more or less manageable.

Dan: This is such good advice. I haven’t had a chance to implement it since I talked with Ron — hey, I was on deadline for this episode! — but honest:  I’m going to. 

Here’s one other thing I’m going to do in the next few weeks:  Have surgery myself. A hernia repair, it’s gonna be fine, I’m in great hands.  But it’s happening a few days before our next episode is scheduled to come out.

So, as it happens, I’ve got a great story from somebody ELSE to share with you then. We’ll have another new episode of our own for you when I’m back.

And meanwhile, we’ll keep the First Aid Kit newsletter coming. If you aren’t subscribed, it’s really good! 

My colleagues Emily and Claire have been serving up need-to-know information:  Like, when you get your annual checkup… what’s actually covered?  A lot of the time, it’s less than you’d think.

Which sucks, but is SO important to know. If you’re not signed up, check it out at arm and a leg show dot com, slash, newsletter.

I’ll catch you soon. Till then, take care of yourself.

This episode of An Arm and a Leg was produced me, Dan Weissmann, with help from Emily Pisacreta — and edited by Ellen Weiss. 

Adam Raymonda is our audio wizard.

Our music is by Dave Weiner and Blue Dot Sessions. 

Claire Davenport is our engagement producer.

Sarah Ballema is our Operations Manager. Bea Bosco is our consulting director of operations. 

An Arm and a Leg is produced in partnership with ºÚÁϳԹÏÍø 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 ºÚÁϳԹÏÍø News. He’s editorial liaison to this show.

An Arm and a Leg is distributed by KUOW, Seattle’s NPR news 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.

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

Julie Rovner: Hello from ºÚÁϳԹÏÍø News and WAMU radio in Washington, D.C. Welcome to What the Health? I’m Julie Rovner, chief Washington correspondent for ºÚÁϳԹÏÍø News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Feb. 5, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. 

Today, we are joined via video conference by Sandhya Raman of CQ Roll Call. 

Sandhya Raman: Good morning. 

Rovner: Anna Edney at Bloomberg News. 

Anna Edney: Hi, everybody. 

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

Kenen: Hi, everybody. 

Rovner: Later in this episode, we’ll have my interview with Renuka Rayasam about our new ºÚÁϳԹÏÍø News project “Priced Out.” If you have a story you’d like to share with us about your inability to afford your health insurance or your health care, I will post a link in our show notes. But first, this week’s news. 

So after a two-week detour, during which funding for the Department of Homeland Security was separated out for a separate resolution, which is still TBD, President [Donald] Trump on Tuesday signed into law the rest of an omnibus spending bill that includes funding for the remainder of the fiscal year for the Department of Health and Human Services, as well as a separate health package that includes, among other things, new rules for pharmacy benefit managers and an extension of temporary Medicare programs, expanding payment for telehealth and so-called hospital at-home care. Sandhya, you succinctly summarized all of this the last time you were on, when we thought this was about to become law. But I think it bears repeating that the spending part of this bill includes very few of the cuts to health programs President Trump asked for in his budget proposal last year. How confident are we that this money is actually going to get spent the way Congress is ordering? 

Raman: I think that’s kind of difficult to say. I think one clue we can look at is in the lead-up to this. We did have some of the different grants rescinded and then reinstated in a short amount of time â€” related to mental health and in public health and a few other areas like that â€” in order to get this across the finish line. I don’t know what guarantees we have that if it’s not this, it’s something else. But I think they do seem a little bit more confident that they got a little bit more language in there this time to prevent that. But I think we’ll also see, as we get into fiscal 2027 spending and what the White House ends up proposing there. 

Rovner: Yeah, I heard an interview with Sen. Tammy Baldwin, who’s the ranking Democrat on the subcommittee that handles HHS, saying that, you know, unlike last year, when it was just a continuing resolution, this year they actually put in language that says, You will spend this this way. But of course, they’ve had language that’s supposed to spend certain things a certain way, which they have thus far ignored, right? 

Raman: Yeah, and I think it’s something that comes up in all of the hearings they have on this that, you know, appropriators love to say Congress has the power of the purse. You know, this is what they are there to do, is to dole out who gets what. And so it’s an affront to them to say, you know, you’ve spent all this time deciding how much should go to various things, and then it doesn’t actually end up that way. So we’ll see how that plays out. 

Rovner: As you mentioned, it’s worth noting that the president’s budget for fiscal 2027, which starts in just eight months, is already technically late. It was due this past Monday. Any idea when we’ll see a budget from the administration? What might be in it? I know it usually comes after the president’s State of the Union, but that speech is usually at the end of January, and this year the State of the Union isn’t until the end of February. 

Raman: So, I will say that almost always the White House budget comes after the date that it’s supposed to, in statute. But we are, I think, expecting at this point either very late this month or pushing into next month, in terms of when we get it. I think in terms of what would be in there, a lot of what we can look to is similar to what we saw in last year’s request; since the White House budget request is a wish list â€” it’s the things the White House wants, not necessarily the things they will get. So I think we can look for a lot of the same proposed cuts as before, because some of those were even proposed in the first Trump administration. I think we can also probably look for a lot of, you know, MAHA-oriented things proposed in there that didn’t get across the finish line â€” the new agency, Administration for a Healthy America, and just kind of flushing that out. And I think those are the big things I’d look for as we get closer to that. 

Rovner: Well, turning to the Affordable Care Act â€” remember the Affordable Care Act and those expired subsidies that are driving up costs for millions of Americans? Remember the frantic negotiations in the Senate to come up with a compromise after the House passed a Democratic-led effort to extend those enhanced subsidies for three more years? Well, apparently, negotiations on a deal have collapsed, and it’s, apparently â€” as we’ve said many times â€” over the often insurmountable issue of abortion. Is this really it for the ACA negotiations, or could this issue come back later this winter, even spring, as more and more people end up dropping their coverage because they can’t afford the new premiums? 

Edney: I think that’s the key point, is we don’t have those numbers. We don’t have a great sense of what that’s going to look like. So I think that when lawmakers start getting those phone calls, that could revive things. I think certainly with the ACA, as it relates to the Hyde Amendment â€” which it is kind of a “never say never,” like, it often kills these deals, but then suddenly something can kind of appear so â€¦ so, yeah, I think you’re right. 

Rovner: Yeah, the Hyde Amendment, just for those who don’t remember, is what basically bans federal funding for abortion through the Labor-HHS spending bill. But anti-abortion forces want to put it in permanent law, rather than having it renewed every year through the spending bill process. And that’s a hang-up that almost blocked the ACA from becoming law in the first place, because even Democrats disagreed over it. 

Edney: Exactly, yeah, and it comes up every single time. You know, there’s â€¦ just no solution, no good solution. 

Raman: I feel like this is maybe the last straw at this point, based on the conversations from the Hill this week. I mean, there was a little hope earlier in the week when we talked to Sen. Tim Kaine [D-Va.], and he said, you know, we’ll see in the next couple days or so, we’re still talking. They met this week. They’re planning to meet more this week and talk about it, and then I think in the last day or so, it just â€¦ I think both sides were kind of admitting that it was done â€¦ because of this issue, [and] there are a couple of other things that are sticking points, and even things that they hadn’t gotten to really ironing out. But they’d said it was kind of moot at this point, if they couldn’t get over Hyde and some of the stuff related to health savings accounts, so. … There are some people that are still hopeful that said that maybe, but I really don’t see how they continue without the people that are most focused on this in the Senate, like really dialing into it. 

Rovner: Yeah, they seem to be sort of consumed right now with figuring out what to do about the Department of Homeland Security in general, and ICE [Immigration and Customs Enforcement] in particular. And I’m glad you mentioned health savings accounts, because obviously that’s been a big Republican push, to give more money directly to people, rather than to insurance companies. Well, it turns out  in the Journal of the American Medical Association [Network] this week that found that cancer patients who have those high-deductible health plans, which get combined with the health savings accounts, those patients had lower rates of survival compared to those with more comprehensive insurance coverage. Quoting from the study, “These data suggest that insurance coverage that financially discourages medical care may financially discourage necessary care and ultimately worsen cancer outcomes.” That’s not going to help Republicans in their efforts to make patients more financially responsible for their care, I wouldn’t think. 

Edney: Yeah, I think a lot of these things that a cancer patient can’t afford â€” I mean, this isn’t a $40 copay; often it’s hundreds of thousands of dollars, they’re considering selling property, selling a house, whatever. So it’s not â€¦ something that people are shopping around for, becoming more fiscally responsible, trying to find, like, a cheaper option to do this. This is something that, clearly, if they could do it, they would. And you know, instead, as this study showed, they’re more at risk of dying because they can’t get these treatments. 

Kenen: I think that just in general, you know, that these high-deductible plans people treat them as for an emergency, for a catastrophic expense, which means people are delaying â€” uninsured people and poorly insured people â€” often delay preventive care and screening. And therefore, if you catch a cancer, and I don’t know the stage of diagnosis â€” I read part of the study; I didn’t read the entire thing. I don’t know the stage of diagnosis. But if your cancer is caught later because you didn’t do preventive screening, some of which are free now, and some of which are not, or some of which are just caught by, you know, when you’re going in for something else, whatever. Later-stage cancer diagnosis is a worse cancer diagnosis. So the disincentives for preventive care, the disincentives for going in earlier, because you don’t want a big bill for something that you are hoping is nothing, is part of the overall picture. 

Rovner: Yeah, and I mean, it also bears saying that, you know, when we were first arguing about health savings accounts and high-deductible health plans, high-deductible health plans had deductibles of, like, $500 or $1,000. Now, high deductibles are five figures. They’re $10,000 and up. And that’s way more than just inflation over the last 20 years. We know that generally people don’t even have $400 set aside for an emergency. So the idea that they can meet a $10,000 deductible so their insurance can kick in is kind of fanciful, I think, for most people. 

All right. Well, meanwhile, there is lots more news on the vaccine front. In an  this week, the new chair of the CDC’s [Centers for Disease Control and Prevention] Advisory Committee on Immunization Practices, Kirk Milhoan, said that the panel should be viewed, quote, “more as a safety committee.” “Efficacy,” he said, “will be secondary.” Basically, he’s saying the panel, whose actual charge is to weigh benefits versus risks of various immunizations, is going to put its finger on the scale to emphasize the risks. Am I reading that right, Anna? 

Edney: Yeah, that’s what, that’s how I read his conversation with Politico. … They’re really charged now to look at the risks of these, which is interesting, because, to put it mildly, because I think it’s kind of a warped way of thinking about vaccines, generally. â€¦ There are some risks â€¦ but we are potentially stopping how many hundreds, thousands of deaths from polio or something like that. So seems like it could get worked into focusing on those risks versus the lives that are saved by it. It seems to be the direction that this administration certainly wants to go. 

Rovner: And that’s, I mean, the point of having â€¦ an expert outside committee is for them to actually do that weighing of benefit versus risk, at least that was my assumption. It’s what I’ve always been told in the almost 40 years I’ve been doing this. 

Edney: Right, and whether it should be a required vaccine versus something you â€¦ deciding to get or something like that. Conversation can help with those kinds of decisions. But this is something â€” a vaccine doesn’t come to market if the FDA is looking at these risks when they consider it in the clinical trials, and that side of it is vetted by the people who are able to have access to a lot of that information. I don’t know that the panel is going to see [it] in the same way, because if you’re looking at the adverse-event database that is kept on vaccines, anyone can send in a side effect to that, or, you know, say that something happened after they had a vaccine. And it can be tough to read that and actually get helpful information from that if we’re looking at the post-market vaccine side effects coming in. 

Rovner: We will continue to watch this space. And it turns out that the changes to vaccine policy extend beyond the United States, too. Reuters broke the story this week that the U.S. is threatening to stop giving money to the global vaccine group Gavi, unless it promises to phase out the use of vaccines that still contain the preservative thimerosal, which has long since been cleared of accusations about causing autism. Gavi provides vaccines to children in the poorest parts of the world, and to stretch its funding, it often relies on less expensive, multidose vaccine vials, which use preservatives to prevent contamination. Apparently, this threat applies to the $300 million the U.S. is already withholding from Gavi that was approved by Congress and to any future funding. So now the U.S. is exporting its effort to scale back childhood immunizations around the world, too? 

Edney: Yeah. It was surprising to see something like that, kind of a demand like that put on Gavi. I guess, in a way, it’s surprising that the administration is still funding Gavi, maybe at all. So you know, I guess, maybe not as shocking that they asked for certain stipulations to be met. But as you mentioned, it is a way to stretch the vaccines to get them to people and countries who otherwise might not have any access to them. So there’s been concern, as you said, that has been debunked about thimerosal, and so we’re not using them that much in vaccines in the U.S., but it’s kind of pushing a first-world problem on other countries. 

Kenen: One really helpful way of thinking about the risk of this preservative is it’s been, as Anna just said, it’s been phased out, not entirely, but mostly in the United States. But in the years â€¦ like, most children are not getting it in their shots. And it has to do with storage of large quantities versus individual vials. We don’t have to go into details there. It’s just not, there’s not much of it anymore, and the autism rate has continued to go up while the thimerosal use went down. So that’s â€¦ even if you’re not a biostatistician, a statistician, it should tell you something, you know. … If that was the cause, we wouldn’t be seeing more cases. The rise of autism is a complicated thing. We don’t have time to discuss all the theories and measurements and how we do it right here, but it’s easy to understand: One went up, and one went down. It didn’t cause it. 

Rovner: Well, finally, on the vaccine front, this week, here’s what happens when fewer people get immunized. Two detainees at one of the Department of Homeland Security’s family detention centers in Texas have now tested positive for measles, which, as we have discussed at some length, is among the most contagious diseases in the known world. Measles has also been found at another detention facility in Arizona. Now, in the first Trump administration, I remember complaints about children who were being held in detention, having been separated from their parents, being vaccinated without their parents’ permission. But which is worse? Getting vaccinated without parents’ permission, or getting a potentially deadly vaccine-preventable disease? 

Edney: Yeah, that’s certainly, certainly, I think, an easy answer. But you know â€¦ these detention centers, it’s so scary because everyone is just packed in there. Everything we’ve heard is how crowded they are, and the people not even being able to lay down. So you do have to wonder whether they’re starting to think differently about just letting it rage through there, or what’s going to happen. I mean, we don’t know yet if quarantine has worked, or anything along those lines. 

Raman: And I think that goes hand in hand a little bit with what we’ve talked about in the past, about, you know, it already being harder to get care for the folks in these facilities, and providers not being able to do that. And if you’re not able to stop something that is so contagious and spreading, it’s just going to exacerbate the whole situation. 

Rovner: Yeah, we have talked at some length about health care for people who are in these detention camps, and how it appears to be significantly lacking. All right, we’re going to take a quick break. We will be right back. 

Back on Capitol Hill, National Institutes of Health Director Jay Bhattacharya appeared before the Senate HELP [Health, Education, Labor & Pensions] Committee on Tuesday and tried to make the case that the agency’s work hasn’t been disrupted by the on-again, off-again funding and grant cuts made during the course of 2025. He pointed out that eventually NIH did spend all of the money that was appropriated to it, but boy, a lot of it came in the last couple of weeks of the fiscal year. Also, as we’ve discussed at some length, there are plenty of stories out there that show that, in fact, funding disruptions have hurt science, including two new ones this week. Stat News has a  who are having trouble finding positions in labs â€” even those students who have their own funding via scholarships or fellowships â€” because the labs don’t know how to plan for what they’re going to have in terms of money. And here at ºÚÁϳԹÏÍø News, we have a story about a Harvard breast cancer lab that’s lost seven of its 18 lab employees after getting its grant frozen and eventually unfrozen, but too late to apply for it to be renewed. Bhattacharya made a big deal of, you know, the NIH, it’s like, OK, we spent all your money. But turning this spigot off and then on again, and then off and then on again, doesn’t feel like a particularly efficient way to spend it. 

Kenen: No, it hurt. It’s really well documented. There are labs all across the country that were hurt, and that meant science that didn’t happen, or didn’t happen as fast and as well as it could have and should have happened. So â€¦ to say on-again, off-again biomedical science funding is fine and dandy. It’s not fine or dandy. 

Rovner: And there were patients whose care was disrupted. 

Kenen: And people in clinical trials who were taking a risk, and inconvenience as well as risk, to be part of a clinical trial. I mean, this was more true of some of the stuff in Africa, when the USAID [United States Agency for International Development] money went away, but some really extreme examples there. But people whose care was interrupted, and people who had volunteered in clinical trials whose care has been interrupted. 

Rovner: Yeah, and people, I mean, for whom these clinical trials were their last chance for, you know, for life or death. I mean, we did see stories from all across the country about clinical trials that got, just stopped in their tracks, and you can’t really restart those, because now you’ve interrupted the care. So the science from them is not going to be as valuable. I mean, you basically have to start over. 

Kenen: You could restart but not where you left off. You have to start again. 

Rovner: Right, exactly. You have to start again, which is also not a great use of money. 

Well, meanwhile, over at the FDA, there are still apparently some pretty loud complaints over the agency’s new, quote, “priority voucher” program, which promises expedited approvals for drugs that, quote, “align with national priorities,” which can apparently be political as well as medical. Our podcast panelist Lizzy Lawrence, over at Stat,  from an employee town hall at FDA, as well as members of Congress who are continuing to express concerns about the potential, if not actual, politicization of the drug review process with this program. Anna, what are you hearing? 

Edney: Yeah, I think that that is still the concern. That town hall did not fix anything in the sense that there’s â€” it’s a completely new paradigm for how they are choosing drugs and pushing them to the front of the line. The FDA has never before really been supposed to or has considered price or anything beyond Is this drug going to be beneficial? They would give things priority review, if it was something that was for lifesaving treatments, or something that just, you know, had, was a huge advance, never existed before. But now they’re saying, If you align with the national views, and nobody really knows exactly what that means. It seems to be that, you know, maybe if you made a deal with Trump to bring down drug prices, you might get some of these. Or if it’s, you know, if you’ve promised to build more manufacturing in the U.S., you might get this. Or if it’s a drug that they just like, then you might get it. I think there’s still just a lot of concern about the legality of this. So even among some drugmakers, there are ones obviously who want this. There are about, I think, 15 right now who have this voucher to get to the front of the line to be, have a superfast review. But there is concern from some that, if another administration comes in, is this even valid? You know, if we get approval, do we even, does it even count if they want to, like, take it, if somebody wants to take it off the market, just given the process? So there’s â€¦ you know, people have quit at the FDA over it, very high-profile people, and it’s interesting that it’s still going, that Marty Makary, the commissioner, is still trying to sell it. And [he] even told staff, you know, according to the reporting from Lizzy, that he was doing it because it was really their idea. So. 

Rovner: Meaning the staff’s idea. 

Edney: Yeah, that’s one way to sell it. 

Rovner: I saw that part. I feel like this is a theme throughout the department, which is that, you know, we’ve had for decades in Republican administrations, and Democratic administrations, science sort of shielded from the political leadership of these agencies, of the FDA and the NIH and the CDC, that the science â€¦ that you can lay over the politics. It’s like, here are our priorities, but the science is the science. And I feel like we’ve had now politics entering every single one of these what are supposed to be scientific agencies, right? 

Edney: Yeah, that’s absolutely true. There’s more political appointees. I think this was brought up when Bhattacharya was before Congress, as well. At NIH, there’s more political appointees, just people with an idea in mind of what might be more important than something else, rather than following where the science is going at the moment. And in the case of FDA, before it was not about trying to go as fast as possible. And it’s not just that there’s politics injected, but it’s that we’re cutting out the regular reviewers with the scientific knowledge because they would like to go faster. That’s part of the appeal, I guess, of the voucher. 

Rovner: Yeah, well, we’ll see how that plays out. All right, that’s the news for this week. Now we will play my interview with ºÚÁϳԹÏÍø News’ Renuka Rayasam, and then we will come back and do our extra credits. 

I am pleased to welcome back to the podcast my ºÚÁϳԹÏÍø News colleague Renuka Rayasam, who is spearheading our newest series, called “Priced Out.” I will, of course, post links to the first stories in our show notes. Renuka, welcome back to What the Health? 

Renuka Rayasam: Thanks for having me, Julie. 

Rovner: Tell us about this project and what the goal is in pursuing it. 

Rayasam: So actually, we started thinking about this a year ago, my colleague Sam Whitehead and I. And we looked at what was happening both with health care costs generally, but also with what Congress was likely to do or not do. And we realized we’re going to start to see uninsurance rates climb back up after years and years of falling. And so that’s what was the impetus for this project. And then, of course, by the end of the year, Congress didn’t extend enhanced subsidies for ACA premiums. People started to feel and see their ACA premiums jump because of that and because of other things that have led to an increase in health care costs. And overall, obviously, people are feeling the pinch in their budgets, and health care is no exception. And this was born out of watching all those trends come together. And then people started writing to us and saying things like: I have insurance, but my deductible is a quarter of my take-home income. You know: I’m a lawyer. I have my own business, but I can’t afford for my family to be on insurance this year. I can’t afford my medication. I can’t afford going to the doctor. And so I think that was really how this series came together, was hearing those stories about people who, whether they’re insured or not, and often not, were just really facing these high costs of health care. 

Rovner: Yeah, as you say, this is not just the binary: Do you have insurance or do you not have insurance? A lot of this is about people who have health insurance and still can’t afford to access care. That’s a big part of this, isn’t it? 

Rayasam: Yeah, absolutely. I mean, so interesting talking to this guy, Noah Hulsman. He’s in Louisville, Kentucky. He owns a skateboard shop there. Youngish guy, 37 and he was saying, you know, he had a “gold” plan last year that he bought through the exchange, and now he has a “bronze” plan, and he’s paying the same amount per month for his premium, but he’s, like, you know, if something were to actually go wrong, I can’t afford my deductible, like, I can’t pay the bills I need for my shop and meet my deductible. And his shoulders hurt, and he’s, like, I can’t afford to get it looked at because of the copays and all the out-of-pocket costs that come along with that. And I think, you know, in this administration and in this Congress, this GOP-led Congress, a lot of talk of things like short-term health plans and lowering premium costs, but these are a lot of plans that come with high costs if you actually try to go and use the health care. And that’s the sticker shock that people are going to face when they start to actually try to go and get health care when they have an issue that they need to get taken care of. 

Rovner: So one of the first stories in this series includes some actionable information, as we call it, for folks who are looking for alternate ways to afford the care that they need if they’ve had to drop or scale back their insurance. What are some of those ways? 

Rayasam: Sure. So I’ll put this caveat out there: Every single person I spoke with in putting these tips together said, even if you have a high deductible, even if the out-of-pocket costs are really high, you should have health insurance because that is the best protection against big bills. If something really catastrophic were to happen, it’s better than nothing. It’ll keep you from going bankrupt. So that’s a caveat out there. But if, after all of that, you still cannot find a plan, you can still, can’t find a plan that you can afford â€” which is a lot of people, that’s, you know, it’s not a negligible number of people in this country. A few things you can do: Talk to your doctor. I think a lot of people are really nervous about talking to their doctor about money and costs, but, you know, I think if a doctor knows this patient is paying out-of-pocket, they might have a cheaper cash-pay option. They might be able to adjust care to try things that are maybe less expensive, you know, maybe get the same quality of care, but try different things that might be a little cheaper. If your doctor is not budging, then go to a place that does specialize in treating patients without insurance. So federally qualified health clinics, community health clinics, a lot of doctors will advertise cash pay. I’m seeing that more and more, actually, a lot of doctors saying, Hey, we do cash-pay options. When you get a prescription from your doctor, don’t just head to the local pharmacy. Comparison-shop. It’s a lot easier to shop for drugs than doctors. A lot of drugmakers have coupons and drug discounts and other ways you can get those products for cheaper. And a lot of big-box retailers â€” like Walmart, Costco â€” will offer generic options for your prescription for really affordable prices, and so â€¦ be sure that you’re shopping around and that you’re being a smart consumer and looking at different avenues and ways to get care. You know, one last thing I’ll mention is something people don’t think about a lot, which is their local county health center. They have a lot of services, disease testing and screenings, and, in a lot of cases, even mental health or substance abuse care. So contact your local county, see what’s out there, and look around. There are ways to get care if you don’t have insurance. It’s harder. It’s going to take more time, but there are options out there. 

Rovner: Can you give us a preview of some of the upcoming stories in the series? 

Rayasam: That’s a good question. So we’re starting to get people who are writing to us and talking about their concerns and, like I said, these are people who could no longer afford their insurance premiums, people who’ve had to scale back on the coverage they’ve gotten and are dealing with that. And so we’re going to sift through those responses and start to write more stories about the things that people are facing and the consequences of that. You know, one of the women I talked to for this first story was talking about how she started rationing her rheumatoid arthritis medication when she found out that she wasn’t going to be able to afford her ACA plan. So we’re, you know, going to dive deeper into issues like that. And, you know, what are the health risks if you have to ration your medication? What are the problems there? What are ways that people can get into troubles? Things like medical credit cards. I think people might be tempted to turn to a medical credit card, but I think there’s a lot of ways that can make the problem of cost of care worse, you know, if that interest starts compounding. And so I think we’re going to look into all the ways that the cost of care [is] affecting people â€” their physical health, their financial health, and just their overall well-being. It’s incredibly stressful, and it can really affect so many parts of your life to not have access to affordable care. 

Rovner: Well, it’s a really important series. Renuka Rayasam, I’m looking forward to reading the rest of it. 

OK, we’re back. 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 post the links in our show notes on your phone or other mobile device. Sandhya, why don’t you go first this week? 

Raman: All right. So I picked a story from The Washington Post by David Ovalle, and it’s called “[].” And his story looks at some of the impacts after the Florida AIDS Drug Assistance Program, which is funded through federal money; it’s helped a lot of people with HIV who weren’t able to afford antiretroviral drugs, be able to afford that. And what’s happened in Florida is that the state officials have lowered the income thresholds to get those benefits, saying that there are financial difficulties. And just kind of looking at, you know, some of the cases, and how that’s affecting people over there. 

Rovner: Yeah, good story. Joanne. 

Kenen: This is from Inside Climate News by Johnny Sturgeon, and it’s called “.” And I had never heard of this before. There’s something called shipbreaking. And shipbreaking is exactly what it sounds like. You take a great big ship, like a big transport, you know, freighter transport ship â€” we’re not talking about, like, little rubber things in a bathtub. And they are full of heavy metals, radioactive materials, and all sorts of toxic waste. And the way you get them out when you’re done with them is you ram them into the beach as hard and fast as you can. It’s shipbreaking! So this is in poor areas, in areas that already have, you know, pollution: India, Pakistan, and Bangladesh are not known for having the cleanest air and water in the world, and poor people live near there. And it’s huge, it’s a really interesting story about something that you would have thought, like, somebody was making up on a comedy show. But it’s happening, and it’s harming people, and it’s harming the planet. 

Rovner: Yeah, I never thought about what happens to a ship when you’re done with it. 

Kenen: I thought there would be some way of, like, I think in our country, we have some way of taking them apart safely. But no. I mean, and this is a global thing. I mean â€¦ it’s not just ships from the region. â€¦ This is happening to hundreds of ships a year. 

Rovner: Anna. 

Edney: Following in the theme of Joanne’s article, mine is “.” This was a really interesting collaboration with al.com, The Atlanta Journal-Constitution, The Associated Press, and a few others. I won’t name all of them, but it’s a look at â€¦ there’s a town in Georgia that is the carpet capital of the U.S., and is how they use Scotchgard on all the carpets, and how that has forever chemicals in it, and has, over the years, just polluted the water there, and people are getting sick. You know, someone’s goats all died. It’s a really inside look at how the local government, the industries, have all collaborated to get to this point. And you know, just as something was potentially being done about PFAS under the Biden administration, the Trump administration has rolled a lot of that back, so I think it makes that particularly relevant now. 

Rovner: Yeah, it does. All right, well, I also have a story from Florida. My extra credit’s from Politico. It’s called “.” It’s by Arek Sarkissian, and it’s from the “Who could possibly have seen this coming, except everyone?” file. It turns out that although FDA specifically gave Florida permission to begin importing cheaper drugs from Canada â€” more than two years ago, Florida was the first state to actually get permission to do this. And although the state has spent an estimated $82 million in state taxpayer funds to contract with a logistics company and open a warehouse for the drugs, it seems that none have been imported yet. Why? Well, because Canada apparently wasn’t kidding when it said its government had no interest in selling drugs to Balkan states so that they could basically import Canada’s price controls. But fear not. The DeSantis administration says it’s still trying to get the program up and running, and it has until May of this year to do that, under the permission that was granted by the FDA. I will be watching that space but not holding my breath. 

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

Raman: I’m on  and on  @SandhyaWrites. 

Rovner: Joanne. 

Kenen: I’m on  and  . 

Rovner: Anna. 

Edney:  and X . 

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

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. 

So, 2026! On New Year’s Day, pretty much every morning news show had a not-so-good news story ready to go.

News anchor: This morning, more than 20 million Americans…

News anchor: â€¦will see healthcare premiums double, triple, or go even higher…

News anchor: â€¦after Congress failed to extend certain subsidies under the Affordable Care Act.

Dan: A lot of people will end up without insurance. Or with much crappier insurance, because they can’t afford anything better. Or paying a lot more for insurance than they can afford. Or some combo platter.

And because employer plans got more expensive too — and a bunch of employers weren’t ready to pay more — lots of folks ended up with insurance from work that leaves them on the hook for more.

All of it leaves a lot more people a lot more vulnerable this year to overwhelming bills: for insurance premiums, for medical care, for medicine.

So: I thought it would be a good time to check in with one of the people who has given me the most inspiration, and has taught me the most about how we can push back against some of this.

That would be Jared Walker, the founder of the nonprofit Dollar For.

I first talked with Jared five years ago, right after he went super-viral on TikTok sharing a secret that was hiding in plain sight: 

Jared Walker: Most hospitals in America are nonprofits, which means they have to have financial assistance or charity care policies. This is gonna sound weird, but what that means is that if you make under a certain amount of money, the hospital legally has to forgive your medical bills.

Dan: Millions of people kept watching as Jared quickly demonstrated how to apply — and then wrapped up with an offer:

Jared Walker: I run a nonprofit that does this, so, uh, DM me and I will actually do it for you. Let’s see if we can crush those medical bills.

Dan: Here’s what Jared said to me a couple weeks later about that offer. 

Jared Walker: Yeah, that was, that really backfired. No, uh… 

Dan: Thousands of people had gotten in touch to take him up on his offer. And Dollar For — a SUPER-tiny nonprofit that Jared had started to help people in his hometown of Portland, Oregon — suddenly had a bigger, national mission that Jared was scrambling to meet.

Jared Walker: ?I’m excited. We’re gonna help a lot of people and, uh, hopefully we can get some funding to scale what we’re doing because shit’s wild. 

Dan: And it has been wild ever since.

Talking with Jared over the last five years — and watching the Dollar For team scale up their ambitions and impact — it’s been one of the most inspiring and eye-opening stories I’ve ever seen. 

?So I was excited to talk with Jared a little after New Years, to hear how things were looking to him in 2026.

I’d already seen the numbers: They helped people wipe out 55 million dollars worth of hospital bills in 2025 — a huge increase from the year before. 

Jared Walker: As far as impact goes, what we were able to do with the money that we raised, like we’re rolling, like Dollar For is killing it

Dan: So I was surprised when Jared said: 2025 had been tough.

Jared Walker: We started the year with two of our biggest donors, basically just backing out. 

Dan: Some of the Trump administration’s early disruptive moves– like trashing foreign aid– had led those donors to re-think their priorities. Dollar For lost half a million dollars — almost a third of their budget. Suddenly Jared found himself scrambling to replace it.

Jared Walker: Just trying to, to make up that, $500,000, gap was, uh, fun.

Dan: He managed to make up about two hundred thousand dollars. He says Dollar For didn’t lay anybody off, but some people went to half time.

As the year went on, more political news forced Jared and Dollar For to re-think *their* strategy for 2025. It was another scramble.

Meanwhile, Dollar For kept setting new records — wiping out two-thirds more medical debt than the year before.

It’s left Jared and his colleagues thinking hard about how they chart their path in a world that’s still changing fast.

The story of where they’ve been in the last year — and what they’ve done across the last five years — continues to help me think about the big picture like nothing else. So it’s a great place for this show to kick off 2026.

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 a show that’s entertaining, empowering, and useful.

To go back to the beginning for a minute. When I first talked with Jared five years ago, he was already looking at the big picture. How big a difference it would make if more people actually got the charity care they qualified for. Here he is in January 2021.

Jared Walker: We’ve had millions of people now that have declared bankruptcy over medical bills that they legally didn’t even have to pay if they knew about this. And that’s like – that should upset people. 

Dan: This is one reason I find Dollar For’s work so compelling — along with their scrappy approach, and their accomplishments: from the start, they’ve always made the scope and the stakes of our health care system’s dysfunction so clear, so stark. 

But — talk about scrappy — when I had that first talk with Jared, he was scrambling to respond to the messages pouring in — thousands of them. He was grabbing whoever he could for help.

Jared Walker: My niece is like 16. I was like, yo. Here’s my credentials. Get on here and start replying to people.

Dan: Then, by the time I talked with him just a few months later, in the summer of 2021, he had taken incredible steps to start scaling up Dollar For, with help from dozens of volunteers.

Including — especially — folks who heard about him on this show.

Jared Walker: I was just shocked at how many people were reaching out saying, I, I heard you on this podcast, I heard you – and I’m like, well, I’ve only been on one podcast, so I know it’s this one. 

Dan: Honestly, this is another part of what makes Dollar For my favorite story. Because it shows how many people are ready to jump in and help.

And how much people are ready to contribute: In just a few months, Jared and a volunteer army — including generals, a couple of wildly qualified folks who put in close to full-time hours for a while — had done something incredible.

They’d built Dollar For a website where anyone, anywhere in the country, could check to see if they qualified for financial assistance, and ask for help applying.

Because every hospital sets its own criteria for who qualifies, setting up that system meant grabbing the charity-care policies from more than two thousand different hospitals, and coding all of the criteria into a database. 

The website with that database went live in the summer of 2021 — less than six months after Jared first went viral on TikTok.

He and his colleagues have been building and refining their operation ever since. And working towards making a big-picture difference.

Last time I checked in with Jared, it was late 2024. Dollar For had put out a couple of research reports estimating the size of that big picture: 

They found that less than a third of the people who qualified for charity care actually got their bills forgiven. 

If all of those people actually got the charity care they qualified for, Dollar For found that would mean 14 billion dollars in hospital bills, in medical debt, would vanish. 

14 billion dollars that hospitals could be forgiving under their own policies, every year. 

Jared definitely noticed that that number, 14 billion dollars, dwarfed the amounts Dollar For had been able to address by working case by case. Like, they were closing in on clearing 32 million dollars in hospital bills that year. Which is a LOT for a tiny organization. Jared was like…

Jared Walker: It sounds great, and then you see the 14 billion number and you’re like, oh, shoot. What are we doing? What are we doing?

Dan: Jared and his colleagues had started a strategic planning process that would lead them to say: Let’s focus on making a dent in that 14 billion dollars by advocating for new policies. Laws to make hospitals at least check to see if people are eligible for charity care before chasing them for bills they can’t pay.

And while they were planning, the ground beneath them started to shift.

The Trump administration took office and among other things, immediately started slashing foreign aid.

?Newscaster 1: President Trump says he wants U-S-A-I-D, the relief agency, helping millions of people around the world to be shut down.

Newscaster 2: Just yesterday, U-S-A-I-D employees in Washington were told to stay home.

Jared says some of his donors reset their priorities — to fill in gaps internationally. One of them finalized their decision just as Dollar For was wrapping up their first board meeting of 2025. 

Jared Walker: I get this email from our biggest donor saying, hey, we’re gonna cut the 300K. 

Dan: Oh wow. 

Jared Walker: Um, and my board chair goes, Jared, what happened to your face? Is everything okay? And I was like, am I gonna tell my whole board right here right now that we just lost our biggest funder?

Dan: I asked Jared later by email: Hey, so did you spill the beans then? His response:

“lol. I did not tell them in that moment. My thought process was ‘ I don’t want to end our first board meeting of the year with this bomb. We are all hyped on the new year… let’s keep that energy. The board can’t change this email”

Jared filled them in later, and started hustling to fill the budget gap. They kept working on their strategic plan through the first few months of 2025.

By the spring, they were putting finishing touches on it — and then the news cycle intervened again. 

Jared Walker: We went into 2025 with this idea of we are going to do more policy work, we’re going to push more policy, we’re going to advocate for better charity care laws, and then… Medicaid cuts, right?

Dan: The Trump administration’s big legislative proposal — the “One Big Beautiful Bill” — aimed to offset big tax cuts in part with big cuts to Medicaid spending. 

Newscaster: Republicans are looking to slash two trillion dollars – with a T– in long term spending. And Medicaid could be a target.

Dan: And a ton of those Medicaid dollars go to hospitals.

Jared Walker: And when you are getting every single headline is ‘Woe is me, we’re a hospital, we’re not gonna make it. You’re gonna bankrupt hospitals…’

Dan: That was gonna make pushing new rules for hospitals — forcing them to be more generous — a tougher sell.

And here’s where these two stories — Dollar For gets hit by big, fast-moving changes in 2025, and two: Dollar For wipes out a lot more medical debt than ever before in 2025 — we’re gonna see where they intersect.

That’s coming right up.

This episode of An Arm and a Leg is a co production of Public Road Productions and ºÚÁϳԹÏÍø News.  That’s a nonprofit newsroom covering health issues in America. 

With all of these big-picture changes — like cuts to Medicaid –Dollar For decided to pivot. 

Jared Walker: we kind of slowed down and said, okay, if people are gonna lose Medicaid, if people are gonna, if their insurance premiums are gonna go up, if all these things, what we need to do is we need to double down on direct service and help more as many patients as we can because the appetite for policy change might not be there.

Dan: They had a communications and marketing team who had planned to spend the year pushing Dollar For’s policy message.

Instead, they focused on spreading the word about charity care and Dollar For. Pitching Jared to reporters. It worked. He says he was featured in more than 90 news stories before the year was out. 

Jared Walker: I was on more podcasts than I’ve ever been on, ever, doing local news stuff. So the marketing team was cooking pretty good as far as getting the word out.

Dan: That meant more folks coming to Dollar For looking for help with charity care. Which is one thing that drove up the number of people Dollar For was able to help.

The other was the payoff on a long-term investment. 

In the spring of last year they finished a project they’d been working on for a long time: Making it easy for patients to fill out a charity care application directly on Dollar For’s website. 

Jared Walker: A patient goes to dollarfor.org. They fill out household size income, what hospital it tells ’em if they’re eligible. If they are, it bounces them right into a digital application. They can do that on their phone, tablet, computer. They’re filling it out and it is automatically mapping their data into the correct hospital form.

Dan: This is the big upgrade:  I don’t have to follow a link to the hospital’s website and find their form. I don’t have to print anything out. 

I’m staying on Dollar For’s user-friendly site, answering questions from my hospital’s application form — because every hospital’s form is different, and some ask for more information than others, the back-end work by Dollar For to give me the right questions? That’s a big deal.

And: The Dollar For team is putting those questions to me in plain, user-friendly English. Which not every hospital form necessarily does. If I get stuck, I message the Dollar For team to get help, directly.

When I’m done, it shows me the results and says:

Jared Walker: Here’s your completed application. Does everything look good? thumbs-up it, we submit it to the hospital, and then we do follow up from there

Dan: Jared says they also created a portal where patients can check on the status of their application, and jump right into a chat with a patient advocate.

I was like: You know, that’s pretty impressive. Your year did not totally suck. 

Jared Walker: Yeah. It is honestly like, you’re like reminding me of, I’m like, oh yeah, we did some, we did some really cool stuff last year.?

Dan: And he sees room for new tech to help them get even more efficient — yes, with help from AI. 

Jared Walker: ?And like, we’re very much in the camp of this is a great tool, it’s not gonna solve all of our problems

Dan: But he does see a few areas where it could help. 

Including — helping his team do something they actually haven’t had the capacity, like the time, to do yet: quality control on the documents patients submit with their applications– like proof of income. 

Jared Walker: Sometimes people accidentally upload a, you know, a picture of their cat instead of their, you know, W2 or, or whatever. So if we could have an AI tool, scan the document and make sure that it matches with what they said…

Dan: And flag situations where  a human at Dollar For should take a look before sending it in…

Jared Walker: that would also save us a bunch of back and forth with the hospital and the patient

Dan: In other words, save time for everyone. And maybe help Dollar For’s rep with hospitals.

Jared Walker: It kind of makes us look bad if we send documents to a hospital and it’s a photo of somebody’s cat, you know?

Dan: That would cost money – Jared estimates a quarter of a million dollars, including the cost of adding Dollar For’s first full-time CTO.

Meanwhile, they haven’t stopped pushing for policy change. In 2025, Dollar For published a study that kind of turned the telescope around on the question it had addressed the year before. If hospitals gave financial assistance to everyone who qualified, they’d found it would save patients 14 billion dollars a year.

This time, they asked: how much of a hit would that 14 billion dollars be to the bottom line for America’s hospitals? How much of their income would they be losing?

Dollar For’s answer: zero point seven percent. 

Jared Walker: Like, this is like a fraction of, a fraction of what these hospitals bring in. 

Dan: Not all hospitals, as Jared is quick to note.

Jared Walker: Like, there’s, you know, 8,000 hospitals in America and they’re not all equal. There are big hospitals, there are small hospitals. Obviously, it’s very hard to, you know, generalize these things.

Dan: Like we’ve talked about here before: Some hospitals really ARE on the verge of going under. And some have profit margins of more than thirty percent. And there’s everything in between. 

But here’s the number that really jumped out at me from that Dollar For report. It’s not just the amount of charity care that hospitals withhold is basically tiny compared to their overall revenue. 

The total amount of income hospitals get directly from patients’ pockets — all the bills I hear about on this show, and that we all know are out there, the bills that drive people into debt, into bankruptcy…

All of that money, all of that suffering represents just 2.5% of what hospitals get paid for care, according to KFF data that Dollar For cites Two point five percent. 

I don’t have a really deep insight here, but this number jolts me back to awareness of how big this health-care industrial complex is. And how much its dysfunction costs our whole society. 

Like, zoom out. We spent five TRILLION dollars a year on this stuff — and so many people still don’t get the health care they need.

It reminds me that — along with understanding ways we can help ourselves and each other — individual, day-to-day ways — it’s important to understand why health care costs so freaking much. Where all that money goes, what we can maybe do about it.

Meanwhile, back to Jared and how he sees things going in 2026. 

Jared Walker: Health care is going to get worse. Health care is going to be more unaffordable than it was. Health care is going to put more people into bankruptcy, more people into a bad financial situation. 

Dan: Which makes the need for Dollar For’s work more obvious. Dollar For isn’t in danger of going away.

But all of the rapid change in the last year — the accomplishments and the setbacks — has Jared thinking hard about how to keep moving forward over the long haul.

Jared Walker: Dollar For has just been so scrappy. We’ve just been so scrappy, you know. I don’t want to be the, you know, the unpaid intern organization that’s just like, you know, burning everybody out. I want to be able to pay people well. I wanna be able to provide incredible healthcare benefits. I wanna be able to have a 401k match. Like, I want people to thrive at Dollar For.

Dan: That’s how you make sure people can stick around and keep growing, and figuring out how to make the biggest impact in a wild environment. 

As we wound up our conversation, I wanted to tell Jared about how An Arm and a Leg’s 2025 had gone. Partly because I thought it might cheer him up a little bit.

So I told him about how a medical student named Thomas Sanford had put together a resource guide for patients based on our reporting, and started handing it out. How other listeners had been helping refine it.

How we’d put a version on our website — prompted by Thomas’s idea that health care workers could decorate the “badge reels” on their lanyards with a QR code patients could scan. 

Jared Walker: Yeah. Putting it on the lanyard. I love it. And it is just something that we need more of is like, how do we empower the patient and the healthcare worker and the people that are, you know, up to fight it.

Dan: That’s it right there. The place we’re in right now — just with health care, the big picture can look really scary. Trying to take on the whole thing — heck, just trying to take in the whole thing, the big picture– it’s a lot. 

And it doesn’t mean we stop trying. But we’re not individually responsible for fixing the whole thing right away. And we can find things to do — ways to help ourselves and each other IN THE MEANTIME.

Like by using the kinds of things we learn here to take a little more control over our own lives — and helping other people take control over theirs.

We spent a lot of the last couple of months asking you to help us keep doing our work– and you really came through. A lot of you included notes with your donations, incredible, heartening notes.

I’m gonna share one here — we actually shared it in the First Aid Kit newsletter last week — but I’m repeating it because it illustrates something:

“This amount, $85.23, is the amount I avoided paying because you taught me how to take notes when speaking to my insurance company, always getting the name of the representative and the call reference number.”

And here’s what I take from that: Every time any of us gets back a little capacity — saves a little money, saves some worry — from a system that threatens to overwhelm us…

That’s capacity we can put to use. To nourish ourselves and each other. To bank some new strength. And things that seem small — saving 85 dollars. Telling someone about Dollar For and helping them connect to charity care.  There’s no way to know if they’ll add up to ENOUGH to move ourselves toward the structural change we need. But every bit truly does count.

So: Thank you again. For listening. For sharing what you know — I learned about Dollar For because listeners to this show saw Jared’s TikTok and made sure to tell me about it.  And for doing what you can for yourself, and your family, and the people around you. 

We’ll have a new episode for you in a few weeks.  

Till then, take care of yourself.

This episode of An Arm and a Leg was produced me, Dan Weissmann, with help from Emily Pisacreta — and edited by Ellen Weiss. 

Adam Raymonda is our audio wizard.

Our music is by Dave Weiner and Blue Dot Sessions. 

Claire Davenport is our engagement producer.

Sarah Ballema is our Operations Manager. Bea Bosco is our consulting director of operations. 

An Arm and a Leg is produced in partnership with ºÚÁϳԹÏÍø 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 ºÚÁϳԹÏÍø News. He’s editorial liaison to this show.

An Arm and a Leg is distributed by KUOW, Seattle’s NPR news 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.

[Names redacted for web transcript.]

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

Julie Rovner: Hello from KFF Health News and WAMU public radio in Washington, D.C. Welcome to What the Health? I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Jan. 22, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So, here we go. 

Today we are joined via videoconference by Sandhya Raman of CQ Roll Call. 

Sandhya Raman: Good morning, everyone. 

Rovner: Sheryl Gay Stolberg of The New York Times. 

Sheryl Gay Stolberg: Hello, Julie. Glad to be here. 

Rovner: And Paige Winfield Cunningham of The Washington Post. 

Paige Winfield Cunningham: Hey, Julie. 

Rovner: Later in this episode, we’ll have my interview with Dr. Ezekiel Emanuel, whose new book, Eat Your Ice Cream, is both a takedown of the wellness industrial complex and a kinder, gentler way to live a more pleasant and meaningful life. But first, this week’s news. 

So, and I don’t want to jinx this, it looks like Congress might pass a spending bill for the Department of Health and Human Services that will become law â€” meaning not a continuing resolution â€” for the first time in years. And attached to that spending bill, scheduled for a vote in the House today, is a compromise health extenders deal that was dropped from the final spending bill in 2024 and which we’ll talk about in a minute. But first, the HHS appropriations bill. Sandhya, what are some of the highlights? 

Raman: So I think overall we just see a little bit of a slight increase for HHS compared to last year. Some agencies get a little bit of a bump: NIH [the National Institutes of Health], SAMHSA [the Substance Abuse and Mental Health Services Administration], HRSA [the Health Resources and Services Administration], Administration for Community Living. CDC [the Centers for Disease Control and Prevention] is kind of the same as last year. But then we do see some cuts in some places. Something that was getting watched a little bit was refugee and entrant assistance, given some of the different national news related to refugees and immigrants, and so that’s getting cut by about a billion. And some of the back-and-forth there is, some conservatives wanted more than that, some Democrats didn’t want that to be cut. I think the big thing in health care that we were waiting on on this was whether or not they would prohibit NIH forward funding, which is something the administration has been pushing for, just giving out a lump sum for grants through NIH rather than over a multiyear period. And the concern the Democrats had on that was that if you’re doing the lump sum all at first, fewer groups would get money for research. And so there is a prohibition on that, on doing the forward funding. 

Rovner: But just to be clear, the president, the administration, had asked for deep, deep cuts to the Department of Health and Human Services, and Congress is basically saying: Yep. Nope. 

Raman: Yeah. I think even if you look at what the House had proposed last year, they had cut a lot of programs, or proposed to cut a lot of, and that was not there. I think a lot of times, what we’ve seen is that even in Trump 1, there’d be a lot more proposed cuts in their proposal, when the White House puts out their blueprint, and then Congress comes to more of a medium point, kind of similar to previous years. So I think that was something that a lot of the health groups had celebrated, that they weren’t going to get the steep cuts that they thought could be part of the process. 

Rovner: Of course, the big question here is: Does the administration actually spend this money? We saw in 2025 them refusing to spend money, cutting grants, cutting off entire universities. And this is money that Congress had appropriated and that the administration is supposed to spend. Are they going to do it this time, is Congress? Have they put anything in this bill to ensure that the administration is going to do it this time? 

Raman: There’s a little bit here and there on some of that. I don’t think there’s quite the sweeping things that some Democrats would have wanted to prevent some of that. Just last week, we had the back-and-forth with SAMHSA grants getting pulled and then unpulled. And so there’s a little language related to that in there, just because that was such a big 24-hour issue. And then education funding is coupled with HHS, and there there is specific language saying you can’t transfer the money that would be for education into another department to dismantle it. So— 

Rovner: And, I would say, and basically, you can’t cut the Department of Education unless Congress says you can. 

Raman: Yeah. So there’s some things in there that are like that, but to get appropriations done, it has to be a bipartisan thing to get that to the finish line. So no one is going to get everything they wanted, not even President [Donald] Trump. 

Rovner: Yes, and I will point out that they are not there yet. The House has to pass this. The Senate has to pass this when they come back next week. We’ve got, apparently, a gigantic snowstorm coming towards Washington, D.C. So it’s moving in the right direction, but it’s not there yet. All right. Now onto the health package that’s catching a ride on this spending bill. What’s in it? And how close is it to the package that got stripped from the 2024 bill after Elon Musk tweeted that the bill was too many pages long? 

Raman: I think it’s fairly similar. We have a lot of the same PBM [pharmacy benefit manager] language that we had when that got dismantled, and a lot of these same kind of extenders that we see from time to time whenever we get an appropriations deal, extending things that are pretty bipartisan but just never have a place to ride elsewhere â€” National Health Service Corps, Special Diabetes Program, things like that. I think that since this time we haven’t had that pushback, we don’t have Elon Musk weighing in and kind of pulling the strings in the way that we did before, these have been very bipartisan provisions that both chambers have been saying that they want to get this done, they want to get this done as soon as possible, even in the beginning of last year. So I don’t sense that something’s really going to derail language targeting PBMs and stuff like that. 

Rovner: I would say the big piece of this is the deal that Congress came up with in 2024 to require more transparency on the part of these pharmacy benefit managers that everybody on both sides is accusing of pocketing some of the savings that they’re getting from drug companies and therefore making drug prices more expensive for employers and consumers. 

Raman: So I think that this has been such a priority that this is their shot to get it done. And it seems like as long as nothing derails appropriations in the next day and a half, then this is their chance to do that. 

Rovner: So what’s not in either of these packages are most of the pieces of the legislation that President Trump called for last week in his self-titled Great Healthcare Plan, with the PBM provisions being a major exception. What else is in Trump’s plan? And what are the prospects for passing it in pretty much any form this year? 

Winfield Cunningham: I would say not great. Yeah. A couple of things that struck me about this plan, which I would note was one page long: This is very Trumpy. Trump obviously loves, he’s a lot more into hauling pharmaceutical CEOs into the White House to make deals than he is crafting detailed policy. Because if you’re actually trying to do health care reform, this is not the way that you would do it. What you would do is actually spend a lot of time on the Hill seeing what Republicans can sign onto, and working with staff to craft detailed policies and etc., etc. But, yeah, so most of this stuff â€” yet I guess another big thing that struck me was a lot of this actually goes after insurers. There are some things in here that drugmakers don’t like, but Trump goes so far as to propose bypassing insurers entirely and sending money to people. And of course he doesn’t detail how that would work. And then there’s a lot of stuff in here about transparency by insurers. I would note the Affordable Care Act had some insurer transparency provisions already. 

So I think what this plan, if we want to call it a plan, reflects is just Trump’s desire to have something that he can call a “great” health care plan that he’s promised for a long time and which he’s going to talk a lot about. But yeah, I don’t think we’re going to see Republicans in Congress do much on this. Yeah, with the exception of the PBMs, which is pretty notable, and I think actually represents a really big win for the pharmaceutical industry, which has obviously felt under fire in this administration and has struck these deals with the White House, which they really don’t like. But they had been threatened that the administration would go further in trying to do this “most favored nation” price caps. And so it’s interesting because insurers are kind of Trump’s new target. That’s what I kind of read in this. And of course I would mention today that major insurers are testifying on the Hill because they’re under fire for raising insurance premiums. 

Rovner: Although, as we’ve noted many times, they’re raising insurance premiums because the cost of health care is going up. Yes, Sheryl. 

Stolberg: Julie, I think the political context of the Great Healthcare Plan, the so-called Great Healthcare Plan, is important. First of all, Republicans have had trouble for decades coming up with some kind of health plan, even before the Affordable Care Act was passed and signed into law in 2010. They weren’t able to do it then. President Trump famously said “nobody knew” that health care was “so complicated.” He’s in a situation now where Republicans have stripped many Americans of their health insurance by letting the extended Obamacare credits expire, and we’re going into a midterm election season in which his party and he have promised repeatedly that they were going to come up with a plan. He said he had a concept of a plan. I think this plan, so to speak, is not even a concept of a plan, and its primary provision actually lifts from what Sen. [Bill] Cassidy was promoting, which was to steer money away from insurance companies and toward consumers. Trump kind of latched onto that. He doesn’t say that explicitly in this 325-word proposal, but it seems clear to me that that is his idea, and that is just not a workable idea. 

He wants, they want, to move money into health savings accounts. I cracked up my elbow earlier this year. I had surgery to repair it. I saw the bill. The bill was $122,000. I am very blessed to have good health insurance through my company. There is no way that the government is going to steer that kind of money into a health savings account for an uninsured person. These are accounts that are meant to be sort of supplemental to spend on relatively small expenditures. And if you are an uninsured person, there is really no way that you can cover yourself. And that’s basically what this so-called “great” American health care plan is proposing, which I suspect, if most Americans really looked at it, they would say, is not so great. 

Rovner: Yeah. I also, I broke my wrist this summer. I also had surgery, although I had outpatient surgery, and it cost $30,000. So it’s, yeah, health care is really expensive, which, as I said, is why insurance premiums are going up. So, this week marks a year since the start of Trump 2.0, and it would take us the rest of the year to detail all that has changed in health policy. But I did want to hit a few themes, some of which you’ve started to talk about, Sheryl. One is the administration’s effort to basically end the federal public health structure as we know it. The Centers for Disease Control and Prevention in Atlanta has basically been taken over by political appointees, most of them without health experience or expertise. Sheryl, you’re our public health expert here. What does it mean for public health to be basically ceded back to the states? 

Stolberg: Well, I think this is kind of a novel experiment here. The core of the CDC is its infectious disease programs. Now, over the decades, since the 1970s, the CDC has greatly expanded its remit to cover things like chronic disease and gun violence prevention and auto safety, etc. But its core is infectious disease. And we know that infectious disease knows no borders. So what we risk having here is a patchwork of state-by-state vaccine recommendations, where some states will follow the CDC’s recommendations, presumably those that are red states. This was never political before. And we’re seeing some states, like blue states like New York and Massachusetts and other New England states, kind of coming together to put forth their own vaccine recommendations. I think this has implications for what vaccines will be covered and what vaccines will be offered by the Vaccines for Children Program, which was created by [President] Bill Clinton to cover poor kids and make sure they get vaccinated. I don’t think we know how that’s going to play out. 

I saw [Health and Human Services] Secretary [Robert F.] Kennedy [Jr.] yesterday in Harrisburg, Pennsylvania, and he insisted that he’s not taking any vaccines away from anyone. If you want your vaccines, you can get them. But the truth is that for decades, the American public and the medical establishment have relied on the CDC to provide guidance. The CDC doesn’t mandate anything, but it provides really important guidance to the country, and the agency is crippled now. Its guidance is not going to be followed. And I think we’re in uncharted territory here. We’re already seeing measles is on the rise. The country’s about to lose its measles elimination status, which we acquired in 2000. Whooping cough is on the rise. 

Rovner: Basically things we know we can prevent with vaccines. 

Stolberg: Exactly, exactly. 

Winfield Cunningham: One of the things I keep thinking about is, Kennedy says over and over again that if you’re a mom, you should do your own research. And it seems like a lot of the effects here is stepping away from this broad recommendation to now this patchwork of recommendations. So when you go to your pediatrician, you might hear guidance based on AAP’s [the American Academy of Pediatrics’] guidance, for example. States are doing different things. And as a parent, when you go to your pediatrician, it all of a sudden, I think, becomes a lot more confusing, especially if you’re someone who maybe already has a little bit of hesitancy about vaccines. 

I was in with our pediatrician last week and asked her what they’re seeing, and people are coming in with a lot more questions. And interestingly, they actually are changing their policy for mandatory vaccines. They actually had required every patient to be up to date by age 2 with the CDC-recommended vaccines. Now those vaccines that are under shared clinical decision-making, they’re no longer going to require those. And it’s not, and they’re going to continue to recommend them, but I think they’re concerned that patients are going to come in and they’re saying: Hey, the CDC doesn’t necessarily recommend these now. I’m worried about them. So it’s put pediatricians in a difficult place. But, yeah, it’s, as a parent, you’re having to make a million decisions about your children, and this just kind of makes that more complicated and confusing, potentially, for parents. 

Rovner: And takes time away from doctors who would like to counsel about other things, too. 

Stolberg: I just want to add one thing about that. Kennedy says do your own research. And if you read the package inserts on a vaccine, you’re going to see that vaccines have side effects, just like any drug. But that information needs context around it, and the parents who are weighing those side effects need also to be told about the risk of the diseases that those vaccines are intended to prevent. And my kids are grown. I’m wondering how pediatricians are having that conversation, or if they’re having that conversation, in talking to parents about: These are the risks of the vaccine. But should your child get measles, these are the risks. Before vaccination was widespread for measles, 450 kids died on average every year. Many more were hospitalized. So I think those conversations need to be had. 

Winfield Cunningham: And I think it’s hard for pediatricians sometimes to illustrate that, because we’re so far removed from people having examples or knowing anyone who had these. 

Rovner: Not anymore. 

Winfield Cunningham: Not anymore. But largely, right? I have a lot of parent friends, and I don’t know a child who’s had measles. Our pediatrician was telling me that when she was in medical school, it was still common for pediatric hospitals to be filled with babies with rotavirus. She said you could smell it down the hallway. And now, actually, the people in medical school, they’re not experiencing that, because of widespread vaccination. 

Rovner: All right. Well, the second big thing I want to hit on is, as Sheryl already mentioned, people losing their health insurance. Last summer’s big budget bill would cut nearly a trillion dollars from the Medicaid program and make it more difficult for people to maintain their coverage through the Affordable Care Act. Republicans refusing to extend the expanded Affordable Care Act subsidies from the Biden era is already prompting people to drop coverage that they can no longer afford. What does it mean to the health care system as a whole that the number of Americans without health insurance is going to begin to rise again? 

Raman: I think it’s a multipronged thing. There are some aspects of these things that might not be felt immediately, that might be later this year or early next year as different provisions of the [One] Big Beautiful Bill kind of come into play â€” work requirements, things like that that might affect how many people have insurance. But also, I think it kind of goes back to some of the things that Sheryl and Paige were saying about, just, if fewer people are vaccinated, it increases the risks for everyone. And if fewer people have health insurance, regardless of what they have, it also makes it more difficult. If people are not getting treated for things, they get exacerbated into more serious conditions. So I think there are a lot of issues at play. Some of them have just, we’re kind of waiting to see how the effects are.  

You know, people that may have skipped out on ACA insurance this year, maybe they haven’t needed to go to the doctor yet. We’re in the first month. People might not go every month. But that doesn’t mean they’re not going to be hit with something big, even tomorrow, next month, month after that. And so I think all of these things kind of compound together to make it a lot more difficult of a situation, and just a lot of the complexities, I think it’s kind of in both of them where you’re not sure. Oh, is this renewed? Is this not renewed? It’s, I think, a lot more difficult for the average person to follow this national conversation as much as people that are really plugged in, so that by the time that it trickles down to them, it’s like: Can I sign up for health insurance still? Are the costs high? Am I still eligible? It gets more and more confusing. And then people who might be eligible might kind of be scared away with some of that chilling effect. 

Stolberg: I should say, I think emergency rooms will also bear the brunt of the reduction in insurance, because without, people who don’t have health insurance will forgo going to the doctor until their [conditions are] unable to be ignored. And then they will wind up in the emergency room. 

Rovner: And then those, I was going to say, and then those emergency rooms will end up passing the bills that they can’t pay— 

Stolberg: Exactly. 

Rovner: â€”onto others who can, or in— 

Stolberg: Exactly. It will drive up costs— 

Rovner: Paige, started— 

Stolberg: â€”in the end. 

Winfield Cunningham: I think a lot of this is going to become clearer over the next couple of months. We still don’t really know the effects of those extra subsidies expiring. I was actually surprised to see that the ACA marketplace enrollment figures they released, I believe last week, were not actually that much lower than last year. But people aren’t kicked off their plan until they haven’t paid their premium for three months. So I think we need to wait until April or so to see how many people were, say, auto-enrolled in a plan which they can no longer afford, and now they’re kicked off. And maybe it’s fewer people than we think. Maybe it’s more people than we think. But I think we just don’t know that yet, and we’re going to have to wait for a couple months to see. 

Rovner: Yeah, I think you’re exactly right. I had the same reaction to seeing those numbers. Like, Wow, those are pretty high. And then it’s like, yeah, but those aren’t necessarily people who’ve had to pay their bills yet. Those are just the people who I think may have signed up hoping that Congress was going to do something. So, yeah, we will have to see how many people, I think it’s called “effectuated enrollment,” and we won’t get those numbers for a little while. 

Well, finally, dismantling the federal research enterprise. As I said, we’ve talked about this a lot, but I didn’t want to let it sort of go unstated. This administration appears to like to keep people guessing by cutting and then restoring research grants, refusing to spend congressionally appropriated funding until they’re ordered to do it by the court, and firing or laying off workers only to call them back weeks or months later. All that makes it difficult or impossible for researchers and universities to plan their projects and personnel needs. Combined with new limits on federal student loans for a lot of graduate students, are we at risk of losing the next generation of researchers? We’re already talking about seeing people moving to Europe to continue their research. 

Stolberg: Yes. I think the answer to that is an unequivocal yes. I am hearing from scientists who are having trouble filling their postdoctoral slots. Or young scientists. It’s really the next generation, right? People who are here already and who have families are trying as best they can to sort of stick it out, or maybe they’ll go into industry if they have to leave academia because they’ve lost their grant funding, or if they’ve left NIH. But it really is the next generation of researchers. I hate to draw this comparison, but we did see during World War II, the United States absorbed a lot of European researchers. This is how we got Albert Einstein, right? So I don’t know that we’ll see necessarily a reversal of that, of scientists fleeing, but we might see more young people choosing not to go into academic biomedicine. 

Rovner: And we’re already seeing, it’s not just Europe. It’s China and India— 

Stolberg: Yeah. Right. 

Rovner: â€”offering packages. 

Stolberg: And they’re recruiting. Those countries are recruiting. Yeah, they’re recruiting young scientists, especially China.  

Rovner: Yeah. 

Stolberg: And that’s a good point. David Kessler, the former FDA [Food and Drug Administration] commissioner, has argued that this is really a national security threat for the country. China is a main adversary of the United States, certainly of President Trump. And if we’re at risk of losing highly qualified biomedical researchers to China, then we are giving them an advantage. 

Rovner: Yeah, something else we will keep an eye on, I think, for the rest of the year. OK, we’re going to take a quick break. We will be right back. 

Meanwhile, back to this week’s news. The American Academy of Pediatrics is leading a coalition of public health groups that are suing to reverse the changes to the childhood vaccine schedule made by the CDC earlier this month. The suit claims that the administration violated portions of the law that oversees federal advisory committees that require membership on those panels to be, quote, “fairly balanced,” and not, quote, “inappropriately influenced.” Among other things, the lawsuit asked the court to ban the CDC’s Advisory Committee on Immunization Practices from further meetings. That would basically stop any further changes to the vaccine schedule, I assume? 

Raman: At the end of the day, what ACIP does is just a recommendation to CDC, and they can choose whether or not to go with that recommendation. So I’m not really sure what would happen next, but it is kind of a whack-a-mole situation where just because you stop this does not mean that changes above that aren’t going to happen. 

Stolberg: Yeah. The Advisory Committee on Immunization Practices is just that. It’s an advisory committee. So this lawsuit takes issue with appointments to that committee and also complains that the committee was not consulted before the decision was made public to change the vaccine recommendations. I’m not exactly sure what the legal authority is for that. There’s apparently a federal law requiring federal advisory committees to be, quote, “fairly balanced” and not “inappropriately influenced.” But this isn’t â€” it’s an executive action â€” right? â€” to appoint committee members. It comes out of the executive branch. So I don’t know of any situation in the past where the judiciary has weighed in and said, You can appoint these people or not these people, or You have to redo a committee. So it’s hard to predict what the courts will say about this. 

Rovner: Meanwhile, it’s not just the ACIP that HHS Secretary RFK Jr. is taking aim at. Following his remaking of that advisory committee, he’s now fired some of the members of a separate panel, the Advisory Commission on Childhood Vaccines, which oversees the federal Vaccine Injury Compensation Program, which Kennedy has said he also wants to revamp. That’s the program that compensates patients who can demonstrate injury from side effects of vaccines. How big a deal could this be if he’s going to go after the vaccine compensation program?  

Stolberg: Julie, this is a big deal, and I’ll tell you why. That committee sets what is known as the table of vaccines. Which injuries does the federal government compensate for? And the federal government does not compensate for autism as a vaccine injury. And I have no evidence of this, but if I were betting, that is where Kennedy wants to go. He does not like the 1986 law that created the National Vaccine Injury Compensation Program because it offered liability protection to pharmaceutical companies. He wants to strip away the liability protection, but as I understand it, he does not want to do away with the law. He does not want to do away with the compensation program. So he may be trying to lay the foundation for the compensation program to be more expansive and cover injuries or allow claims for injuries that are not currently considered vaccine injuries, like autism. 

Rovner: Which of course would collapse the program because it’s paid for by an excise tax on vaccines. That was the original deal back in 1986. The vaccine manufacturers said: We’ll pay you this tax, from which you, the federal government, will determine who gets compensated. And in exchange, you’ll relieve us of this liability, because we’re getting sued to death. And if you don’t do this, we’re going to stop making vaccines entirely. That was the origin of this back in 1986. And I was there. I covered it. 

Stolberg: Yeah, exactly. I have read a lot of this history, and the CDC was really over a barrel. The companies were writing to CDC, saying, We’re going to pull the plug on our vaccines. And the CDC was worried that American kids were going to go without lifesaving vaccines because companies were going to quit making them. So they pushed this bill. [President Ronald] Reagan didn’t like it. He signed it into law anyway. And it’s created this program, which is actually imperfect. A lot of people who actually legitimately have vaccine-injured children have trouble getting compensated through this program., and I think many people on all sides of this issue would say that it does need to be overhauled. But it will be interesting to see who Kennedy picks for those committee slots. 

Rovner: Yeah, I think we’re going to learn a lot more about it. We’re going to learn a lot more about it this year. Well, finally, in vaccine land this week, Texas attorney general and U.S. Senate candidate Ken Paxton on Wednesday announced what his office is calling a, quote, “wide sweeping investigation into unlawful financial incentives related to childhood vaccine recommendations.” His statement says that there is a, quote, “multi-level, multi-industry scheme that has illegally incentivized medical providers to recommend childhood vaccines that are not proven to be safe or necessary.” Actually, one of the reasons that Congress created the Vaccines for Children Program back in the 1990s, Sheryl, as you mentioned earlier, is because most pediatricians lost money on giving vaccines. And today, many people can’t even get vaccines from their doctors, because it’s too expensive for the doctors to stock them. What does Paxton think he might find here? 

Stolberg: This is like stump the panelists. No one knows. 

Rovner: I see a lot of people’s— 

Raman: I’m not sure what he thinks he might find, but I do think that he is one of the attorneys general that is generally on the forefront of trying things, to throw spaghetti at the wall and see if it sticks on a variety of issues. So it might be the sort of thing where if he finds something, then it could be kind of a jumping point for other conservative attorneys general. And of course just that he’s primarying Sen. John Cornyn for Senate, so if it raises his profile for more folks. But I’m not sure if there’s a specific thing that he’s looking for. 

Rovner: So he’s trying to curry favor with the anti-vaxxers in Texas, of which we know there are a lot. 

Raman: That would be my best read. 

Stolberg: Austin is, actually, the state capital in Austin is a hot spot for anti-vaccine activism. Andrew Wakefield, who wrote the 1998 Lancet article that’s been retracted, is in Austin. Del Bigtree, who runs the Informed Consent Action Network, is in Austin. There’s a group that I have  called Texans for Vaccine Choice that is one of the early parent-driven groups seeking to roll back vaccine mandates, is based in Austin. So there’s a lot of sentiment there that Ken Paxton might be trying to appeal to. 

Rovner: See? You’ve answered my question. Thank you. All right, that is this week’s news. Before we get to my interview with Dr. Zeke Emanuel, a couple of corrections from last week. First, I misspoke when I said House Republicans were becoming a minority in name only. Of course, I meant they were becoming a majority in name only. I also incorrectly said the lawsuit that helped get the Title X family planning money flowing back to clinics was filed by Planned Parenthood. It was actually filed by the ACLU [American Civil Liberties Union] on behalf of the National Family Planning and Reproductive Health Association. Apologies to all. OK, now we will play my interview with Dr. Zeke Emanuel about his new wellness book, and then we’ll come back and do our extra credits. 

I am so pleased to welcome back to the podcast Dr. Ezekiel Emanuel. Zeke is an oncologist and bioethicist by training and currently serves as vice provost for global initiatives and professor of medical ethics and health policy at the University of Pennsylvania. He formerly worked at the National Institutes of Health before he helped write and implement the Affordable Care Act while his brother Rahm was serving as President [Barack] Obama’s White House chief of staff. Zeke’s latest book, Eat Your Ice Cream: Six Simple Rules for a Long and Healthy Life, is out now. Zeke, welcome back to What the Health? 

Ezekiel Emanuel: Oh, it’s my great honor and pleasure. 

Rovner: So I feel like the subtitle of this book could be How to Keep Yourself Healthy Without Making Yourself Crazy or Broke and that it’s a not so thinly veiled attack on what many of us refer to as the “wellness industrial complex.” What’s gone wrong with the wellness movement? Isn’t it good for us to pursue wellness? 

Emanuel: It is good for us to pursue wellness. I think that there are probably three things that are seriously wrong with the movement. The first one is that they make wellness an obsession that you have to focus all your energy on, which is totally wrong. Wellness should be a habit that sort of works in the background while you focus on the really important things of life. I think the second thing is they tend to overcomplicate things. Part of that is they’ve got to send out an email every day or every other day. They’ve got to do a video, a podcast, what have you. And so they make it complicated so that they have something to report on. And the third thing is they make it oversimple. They’re reductionist. They talk about diet and exercise and sleep, and leave out other very, very important parts of wellness, maybe the most important part of wellness, which is your social interactions. And almost all these experts ignore it. 

And the last thing I would say â€” I guess I have four points â€” the last thing I would say is they have huge conflicts of interest. The wellness industrial complex is between $1- and $2 trillion a year, depending on what you want to include in that bucket, which means that there’s lots of people chasing lots of money trying to sell you lots of crazy items. So there’s money to be had and Them thar hills and people make all sorts of exaggerations. I want to emphasize for your listeners, I’m selling nothing, absolutely nothing. 

Rovner: I will say, I went to your book party. I’ve been to a lot of book parties over the years. Yours is the first one where I actually was not expected to buy the book. You actually gave the book away. 

Emanuel: Yeah, I can’t stand that. Oh, I hate that. 

Rovner: I would say, I assume you were making a point with that. I also ate the ice cream, which was very good. 

Emanuel: Yes. 

Rovner: I feel like your underlying message here is that it’s not enough to make yourself biologically healthy â€” you have to do things that make you happy, too. Is that a fair interpretation? 

Emanuel: Yes, that’s a very fair interpretation. Look, if you’re going to do wellness right, you’re going to be doing it for years and decades of your life. You cannot will yourself to do something for decades. You can will yourself to do something for a few weeks and a few months, but then, unless it becomes a habit that you actually enjoy, you’re simply not going to continue to do it. And so if you want to eat well, you want to exercise, you want to have social interactions, you actually have to make them something that’s pleasurable for your life, something that you find meaningful, even. That’s, again, I think something that’s seriously missing from a lot of these wellness influencers, because they make a lot of wellness about self-denial, about: You should deprive yourself. You should fast. Maybe you should fast. That’s OK if you can do it and you can work it into your schedule. Actually today is one of my fast days, so I am working it into my schedule. But that’s not for everyone, and it’s not essential to wellness and living a long and happy life. 

Rovner: So what are your six simple rules, in two minutes or less? 

Emanuel: The first one is: Don’t be a schmuck. Don’t take unreasonable risks. Don’t climb Mount Everest. Don’t go BASE jumping. Don’t smoke. Don’t do a lot of other stupid things. The second is: Engage people. A rich social life is the most important thing for a long, healthy, and happy life, and having close friends who you get together with regularly, talk to every week, have dinners with, acquaintances, very, very important. And then casually talking to people who you happen to interact with, either when you get your coffee, you go to the grocery store, you go to the restaurant, you hop in an Uber or a cab. Those are very important social interactions that we tend to ignore and tend to downplay. The third rule is: Keep your mind mentally sharp. And there are important aspects of that. Don’t retire. Take on new cognitive challenges. 

The fourth is: Eat well, and make sure you get rid of the unhealthy eating part and eat important, non-processed items. The fifth is: Exercise. Do the three kinds of exercise: aerobic exercise, strength training, and balance and flexibility with yoga. And the last one is: Sleep well. It’s the one you cannot will yourself to begin doing. You can only sort of prep the bedroom and then hope it happens. 

Rovner: So this whole thing didn’t really need to be book length, but you spent a lot of time reviewing the literature on various aspects of health and wellness, like, you know, a scientist would. Are you trying to make a point here about the current state of science and how the public views it? 

Emanuel: I am. I am a data-driven guy. I like data. I think when you have more than 3 million people that have been surveyed and followed in terms of social interactions and their impact on your wellness and your physical health, that’s worth noting, and it’s worth noting what those studies come to. And they all come to the same basic thing, which is you can reduce your risk of death and mortality in the subsequent six, 10, 12 years, depending upon the study, by about 20% to 30% by greater social interaction, more robust friendships. That’s a pretty impressive number, if you ask me. So I’m trying to emphasize the data and get people to understand and be motivated by the data. And I think I’m pretty clear about moments when I, say, interpret the data differently than a lot of other people do, because I think that’s part of science. 

So, for example, the PSA [prostate-specific antigen] test. Most guidelines say you should get a PSA test. I’m against the PSA test because, yes, it will reduce your risk of dying from prostate cancer, but it does not reduce your overall mortality. I think I don’t much care what’s written on my death certificate. I care about the length and wellness of my life, and the PSA isn’t going to affect that. But others disagree, and then I’m very frank about those kind of disagreements. 

Rovner: So in 2014 you rather famously wrote an Atlantic article called “.” Has writing this book changed your mind about this? And I will say, I’m only a year younger than you, so I have a stake in this, too. 

Emanuel: No, writing this book didn’t change my mind. It did change some things that I do. I will say, what really changed my mind, to the extent that anything changed my mind, was covid and the idea of getting vaccines after 75, I think, is a good thing, especially if whatever’s going around is targeting older people. It seems easy to protect yourself, whether from the flu or something like covid, with a vaccine. So that, I have changed my mind. Researching this book made me put a little more emphasis on, for example, strength training, which I had not done a whole lot of, directly. I’d done it because I ride a bicycle and I strengthen my lower half, my quads and my hamstrings and my gluteal muscles, but I hadn’t really focused on the upper body. 

Rovner: You should do Pilates. It’s great. 

Emanuel: Noted. 

Rovner: Zeke Emanuel. It is always fun to chat with you. And congratulations on the book. 

Emanuel: Thank you, Julie. This has been wonderful and very rapid-fire, more rapid-fire than anyone, because you get right to the heart of things. 

Rovner: Well, we have a lot more that we’re going to talk about this week. Thank you, Zeke. 

Emanuel: Take care, Julie. Bye-bye. 

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

Raman: My extra credit is called “,”and it’s by Judd Legum for Popular Information, his newsletter. And I thought this was really interesting, because, I think, for me, I look very much at HHS and major health agencies, but his piece kind of looks at how ICE [Immigration and Customs Enforcement] has not been paying third-party providers for medical care for detainees since October and that ICE, last week, the agency kind of quietly announced that it would not be processing any of the claims for medical care until April of 2026. And so doctors are instructed to kind of hold on that. And that’s kind of a downward spiral of providers denying services to detainees because they know they’re not going to get paid for a while. And so I thought this was a really interesting piece looking at that. 

Rovner: Yes, indeed. And kind of scary. Paige. 

Winfield Cunningham: Yeah, mine is a piece in Politico called “,” and it’s by Amanda Chu. And this really caught my eye because it was a look at how RFK’s demonization of food and pharma is motivating trial lawyers representing consumers who are saying they’ve been harmed by these products â€” one example, of course, is the lawsuit against the maker of Tylenol â€” and how this really kind of goes against where Republicans have usually been, against trial lawyers representing consumers who say they’ve been harmed by big, bad companies. And so, yeah, it was a really interesting look at that and just at how RFK’s kind of populist, pro-consumer streak has fueled all of this. 

Rovner: The world indeed turned upside down. Sheryl. 

Stolberg: So my extra credit is from Rolling Stone. The headline is “,” and it’s by Katherine Eban. She’s a terrific journalist. And this is about the study in Guinea-Bissau. When CDC pulled back its recommendation for children to be vaccinated at birth against hepatitis B, HHS gave this grant to these Danish researchers to conduct this study in Guinea-Bissau, which would compare vaccinated infants to unvaccinated infants. And there was a huge howl of protest. This study would never be done in this country. The idea of withholding a vaccine from an infant that has been proven to be safe and effective is highly unethical. It evokes memories of the Tuskegee study, in which government doctors withheld treatment for syphilis. So there was this huge uproar, and it turns out that the researchers who got the grant are these Danish statisticians who have a really questionable research history. And the story documents, through emails, how they got basically this no-bid grant by coordinating with some of Kennedy’s allies from his movement, from his vaccine advocacy days. And it was kind of an inside deal, basically. So I just think that this study has generated a lot a lot of complaints. I should say that the researchers have amended the protocol, and now I think they’re going to give shots to one group at age 6 weeks. But still, it’s a very problematic study, and the story exposes how it came to be. 

Rovner: Yeah, it is quite the story. Well, I also have an immigration story. It’s from my former colleague Liz Szabo at the University of Minnesota’s Center for Infectious Disease Research and Policy, and it’s called “.” And it’s not just undocumented people avoiding medical care, as Liz details. U.S. citizens with serious health needs are also scared of getting caught up in the ICE dragnet that’s now all around the city. And ICE officials have even been entering hospitals and other health facilities â€” which in previous years they had not been allowed to do. In the dead of winter in Minneapolis, with a particularly severe flu year, this is threatening to become a health crisis as well as an immigration crisis. 

OK, that’s this week’s show. Before we go, it’s almost February. That means our annual KFF Health News Health Policy Valentine contest is open. Please send us your clever, heartfelt, or hilarious tributes to the policies that shape health care. I will post a link to the formal announcement in the show notes. As always, thanks to our editor, Emmarie Huetteman, and our producer-engineer, Francis Ying. A reminder: What the Health? is now available on WAMU platforms, the NPR app, and wherever you get your podcast, as well as, of course, kffhealthnews.org. Also as always you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can find me still on X, , or on Bluesky, . Where are you folks hanging these days? Sandhya. 

Raman:  and , @SandhyaWrites. 

Rovner: Sheryl 

Stolberg: I’m  and , @SherylNYT. 

Rovner: Paige. 

Winfield Cunningham: I’m on X, , and Bluesky, . 

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

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

Julie Rovner: Hello from ºÚÁϳԹÏÍø News and WAMU public radio in Washington, D.C., and welcome to What the Health? I’m Julie Rovner, chief Washington correspondent for ºÚÁϳԹÏÍø News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Jan. 15, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. 

Today, we are joined via video conference by Anna Edney of Bloomberg News. 

Anna Edney: Hi, everyone. 

Rovner: Alice [Miranda] Ollstein of Politico. 

Alice Miranda Ollstein: Hello. 

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

Joanne Kenen: Hi, everybody. 

Rovner: Later in this episode, we’ll have my interview with ºÚÁϳԹÏÍø News’ Elisabeth Rosenthal, who reported and wrote the latest “Bill of the Month,” about an ER trip, a scorpion pepper, and a ghost bill. But first, this week’s news. Let’s start this week on Capitol Hill, where both houses of Congress are here and legislating. This week alone, the Senate rejected a Democratic effort to accept the House-passed bill that would renew for three years the Affordable Care Act’s expanded subsidies â€” the ones that expired Jan. 1.  

The Senate also turned back an effort to cancel the Trump administration’s regulation covering the ACA, which, although it has gotten far less attention than the subsidies, would also result in a lot of people losing or dropping health insurance coverage.  

Meanwhile, in the House, Republicans are struggling just to keep the lights on. Between resignations, illnesses, and deaths, House Republicans are very nearly â€” in the words of longtime Congress watcher  â€” a [majority] in name only, which I guess is pronounced “MINO.” Their majority is now so thin that one or two votes can hand Democrats a win, as we saw earlier this week in a surprise defeat on an otherwise fairly routine labor bill. Which brings us to the prospects for renewing those Affordable Care Act subsidies. When the dust cleared from last week’s House vote, 17 Republicans joined all the House’s Democrats to pass the bill and send it to the Senate. But it seems that the bipartisan efforts in the Senate to get a deal are losing steam. What’s the latest you guys are hearing? 

Ollstein: Yeah, so it wasn’t a good sign when the person who has sort of come out as a leader of these bipartisan negotiations, Ohio Sen. Bernie Moreno, at first came out very strong and said, We’re in the end zone. We’re very close to a deal. We’re going to have bill text. And that was several days ago, and now they’re saying that maybe they’ll have something by the end of the month. But the initial enthusiasm very quickly fizzled as they really got into the negotiations, and, from what my colleagues have reported, there’s still disagreements on several fronts, you know, including this idea of having a minimum charge for all plans, no zero-premium plans anymore, which the right says is to crack down on fraud, and the left says would really deter low-income people from getting coverage. And there, of course, is, as always, a fight about abortion, as we spoke about on this podcast before. There is not agreement on how Obamacare currently treats abortion, and thus there can be no agreement on how it should treat abortion. 

And so the two sides have not come to any kind of compromise. And I don’t know what compromise would be possible, because all of the anti-abortion activist groups and their allies in Congress, of which there are many, say that the only thing they’ll accept is a blanket national ban on any plan that covers abortion receiving a subsidy, and that’s a nonstarter for most, if not all, Democrats. So I don’t know where we go from here. 

Rovner: Well, we will talk more about both abortion and the ACA in a minute, but first, lawmakers have just over two weeks to finish the remaining spending bills, or else risk yet another government shutdown. They seem to [be] making some headway on many of those spending bills, but not so much on the bill that funds most of the Department of Health and Human Services. Any chance they can come up with a bill that can get 60 votes in the Senate and a majority in the much more conservative House? That is a pretty narrow needle to thread. I don’t think abortion is going to be a huge issue in Labor, HHS, because that’s where the Hyde Amendment lives, and we usually see the Hyde Amendment renewed. But, you know, I see a lot of Democrats and, frankly, Republicans in the Senate wanting to put money back for a lot of the things that HHS has cut, and the House [is] probably not so excited about putting all of that money back. I’m just wondering if there really is a deal to be had, or if we’re going to see for the, you know, however many year[s] in a row, another continuing resolution, at least for the Department of Health and Human Services. 

Ollstein: Well, you’re hearing a lot more optimism from lawmakers about the spending bill than you are about a[n] Obamacare subsidy deal or any of the other things that they’re fighting about. And I would say, on the spending, I think the much bigger fights are going to be outside the health care space. I think they’re going to be about immigration, with everything we’re seeing about foreign policy, whether and how to put restraints on the Trump administration, on both of those fronts. On health, yes, I think you’ve seen efforts to restore funding for programs that was slashed by the Trump administration, and you are seeing some Republican support for that. I mean, it impacts their districts and their voters too. So that makes sense. 

Kenen: We’ve also seen the Congress vote for spending that the administration hasn’t been spent. So Congress has just voted on a series of things about science funding and other health-related issues, including global health. But it remains to be seen whether this administration takes appropriations as law or suggestion. 

Rovner: So while the effort to revive the additional ACA subsidies appears to be losing steam, there does seem to be some new hope for a bipartisan health package that almost became law at the end of 2024, so 13 months ago. Back then, Elon Musk got it stripped from the year-end spending bill because the bill, or so Musk said, had gotten too big. That health package includes things like reforms for pharmacy benefits managers and hospital outpatient payments, and continued funding for community health centers. Could that finally become law? That thing that they said, Oh, we’ll pass it first thing next year, meaning 2025. 

Edney: I think it’s certainly looking more likely than the subsidies that we’ve been talking about. But I do think we’ve been here before several times, not just at the end of last year â€” but, like with these PBM reforms, I feel like they have certainly gotten to a point where it’s like, This is happening. It’s gonna happen. And, I mean, it’s been years, though, that we’ve been talking about pharmacy benefit manager reforms in the space of drug pricing. So basically, you know, from when [President Donald] Trump won. And so, you know, I say this with, like, a huge amount of caution: Maybe. 

Rovner: Yeah, we will, but we’ll believe it when â€¦ we get to the signing ceremony. 

Ollstein: Exactly. 

Rovner: Well, back to the Affordable Care Act, for which enrollment in most states end today. We’re getting an early idea of how many people actually are dropping coverage because of the expiration of those subsidies. Sign-ups on the federal marketplace are down about 1.5 million from the end of last year’s enrollment period, and that’s before most people have to pay their first bill. States that run their own marketplaces are also reporting that people are dropping coverage, or else trying to shift to cheaper plans. I’m wondering if these early numbers â€” which are actually stronger than many predicted, with fewer people actually dropping coverage â€” reflect people who signed up hoping that Congress might actually renew the subsidies this month. Since we kept saying that was possible. 

Ollstein: I would bet that most people are not following the minutiae of what’s happening on Capitol Hill and have no idea the mess we’re in, and why, and who’s responsible. I would love to be wrong about that. I would love for everyone to be super informed. Hopefully they listen to this podcast. But you know, I think that a lot of people just sign up year after year and aren’t sure of what’s going on until they’re hit with the giant bill.  

Rovner: Yeah. 

Ollstein: One thing I will point out about the emerging numbers is it does show, at least early indications, that the steps a lot of states are taking to make up for the shortfalls and put their own funding into helping people and subsidizing plans, that’s really working. You’re seeing enrollment up in some of those states, and so I wonder if that’ll encourage any others to get on board as well. 

Kenen: But â€¦ I think what Julie said is it’s â€¦ the follow-up is less than expected. But for the reasons Julie just said is that you haven’t gotten your bill yet. So either you haven’t been paying attention, or you’re an optimist and think there’ll be a solution. So, and people might even pay their first bill thinking that there’ll be a solution next month, or that we’re close. I mean, I would think there’d be drop-off soon, but there might be a steeper cliff a month or two from now, when people realize this is it for the year, and not just a tough, expensive month or two. So just because they’re not as bad as some people forecast doesn’t say that this is going to be a robust coverage year. 

Edney: And I think, I mean, they are the whole picture when you’re talking about who’s signing up, but a lot of these people that I’ve read about or heard about are on the radio programs and different things are signing up, are drastically changing their lives to be able to afford what they think might be their insurance. So how does that play out in other aspects? I think will be .. of the economy of jobs, like, where does that lead us? I think will be something to watch out for too. 

Rovner: And by the way, in case you’re wondering why health insurance is so expensive, we got the , and total health expenditures grew by 7.2% from the previous year to $5.3 trillion, or 18% of the nation’s GDP [gross domestic product], up from 17.7% the year before. Remember, these are the numbers for 2024, not 2025, but it makes it pretty hard for Republicans to blame the Affordable Care Act itself for rising insurance premiums. Insurance is more expensive because we’re spending more on health care. It’s not really that complicated, right? 

Kenen: This 17%-18% of GDP has been pretty consistent, which doesn’t mean it’s good; it just means it’s been around that level for many, many, many years. Despite all the talk about how it’s unsustainable, it’s been sustained, with pain, but sustained. $5.7 trillion, even if you’ve been doing this a long time â€¦ 

Rovner: It’s $5.3 trillion. 

Kenen: $5.3 trillion. It’s a mind-boggling number. It’s a lot of dollars! So the ACA made insurance more â€” the out-of-pocket cost of insurance for millions of Americans, 20-ish million â€” but the underlying burden we’ve not solved the — to use the word of the moment, the “affordability” crisis in health care is still with us and arguably getting worse. But like, I think we’re sort of numb. These numbers are just so insane, and yet you say it’s unsustainable, but â€¦ I think it was Uwe’s line, right? 

Rovner: It was, it was a famous Uwe Reinhardt line. 

Kenen: No, it’s sustainable, if we’re sustaining it at a high â€” in economically â€” zany price.  

Rovner: Right. 

Kenen: And, like, the other thing is, like, where is the money? Right? Everybody in health care says they don’t have any money, so I can’t figure out who has the $5 trillion. 

Rovner: Yeah, well, it’s not â€¦ it does not seem to be the insurance companies as much as it is, you know, if you look at these numbers â€” and I’ll post a link to them â€” you know, it’s hospitals and drug companies and doctors and all of those who are part of the health care industrial complex, as I like to call it. 

Kenen: All of them say they don’t have enough.  

Rovner: Right. All right. So we know that the Affordable Care Act subsidies are hung up over abortion, as Alice pointed out, and we know that the big abortion demonstration, the March for Life, is coming up next week, so I guess it shouldn’t be surprising that Senate health committee chairman and ardent anti-abortion senator Bill Cassidy would hold a hearing not on changes to the vaccine schedule, which he has loudly and publicly complained about, but instead about the reputed dangers of the abortion pill, mifepristone. Alice, like me, you watched yesterday’s hearing. What was your takeaway? 

Ollstein: So, you know, in a sense, this was a show hearing. There wasn’t a bill under consideration. They didn’t have anyone from the administration to grill. And so this is just sort of your typical each side tries to make their point hearing. And the bigger picture here is that conservatives, including senators and the activist groups who are sort of goading them on from the outside â€” they’re really frustrated right now about the Trump administration and the lack of action they’ve seen in this first year of this administration on their top priority, which is restricting the abortion pill. Their bigger goal is outlawing all abortion, but since abortion pills comprise the majority of abortions these days, that’s what they’re targeting. And so they’re frustrated that, you know, both [Robert F.] Kennedy [Jr.] and [Marty] Makary have promised some sort of review or action on the abortion pill, and they say, We want to see it. Why haven’t you done it yet? And so I think that pressure is only going to mount, and this hearing was part of that. 

Rovner: I was fascinated by the Louisiana attorney general saying, basically, the quiet part out loud, which is that we banned abortion, but because of these abortion pills, abortions are still going up in our state. That was the first time I think I’d heard an official say that. I mean that, if you wonder why they’re going after the abortion pill, that’s why â€” because they struck down Roe [v. Wade] and assumed that the number of abortions would go down, and it really has not, has it? 

Ollstein: That’s right. And so not only are people increasingly using pills to terminate pregnancies, but they’re increasingly getting them via telemedicine. And you know, that’s absolutely true in states with bans, but it’s also true in states where abortion is legal. You know, a lot of people just really prefer the telemedicine option, whether because it’s cheaper, or they live really far away from a doctor who is willing to prescribe this, or, you know, any other reasons. So the right â€” you know, again, including senators like Cassidy, but also these activist groups â€” they’re saying, at a bare minimum, we want the Trump administration to ban telemedicine for the pills and reinstate the in-person dispensing requirement. That would really roll back access across the country. But what they really want is for the pills to be taken off the market altogether. And they’re pretty open about saying that.  

Rovner: Well, rather convenient timing from the , which published a peer-reviewed study of 5,000 pages of documents from the FDA that found that over the last dozen years, when it comes to the abortion pill and its availability, the agency followed the evidence-based recommendations of its scientists every single time, except once, and that once was during the first Trump administration. Alice, is there anything that will convince people that the scientific evidence shows that mifepristone is both safe and effective and actually has a very low rate of serious complications? There were, how many, like 100, more than 100 peer-reviewed studies that basically show this, plus the experience of many millions of women in the United States and around the world. 

Ollstein: Well, just like I’m skeptical that there’s any compromise that can be found on the Obamacare subsidies, there’s just no compromise here. You know, you have the groups that are making these arguments about the pills’ safety say very openly that, you know, the reason they oppose the pills is because they cause abortions. They say it can’t be health care if it’s designed to end a life, and that kind of rhetoric. And so the focus on the rate of complication â€¦ I mean, I’m not saying they’re not genuinely concerned. They may be, but, you know, this is one of many tactics they’re using to try to curb access to the pills. So it’s just one argument in their arsenal. It’s not their, like, primary driving, overriding goal is, is the safety which, like you said, has been well established with many, many peer-reviewed studies over the last several years. 

¸é´Ç±¹²Ô±ð°ù:ÌýSo, in between these big, high-profile anti-abortion actions like Senate hearings, those supporting abortion rights are actually still prevailing in court, at least in the lower courts. This week, [a lawsuit filed by the American Civil Liberties Union and the National Family Planning and Reproductive Health Association against the Trump administration after the administration also quietly gave Planned Parenthood and other family planning groups] back the Title X family planning money that was appropriated to it by Congress. That was what Joanne was referring to, that Congress has been appropriating money that the administration hasn’t been spending. But this wasn’t really the big pot of federal money that Planned Parenthood is fighting to win back, right?

Ollstein: It was one pot of money they’re fighting to win back. But yes, the much bigger Medicaid cuts that Congress passed over last summer, those are still in place. And so that’s an order of magnitude more than this pot of Title X family planning money that they just got back. So that aside, I’ve seen a lot of conservatives conflate the two and accuse the Trump administration of violating the law that Congress passed and restoring funding to Planned Parenthood. This is different funding, and it’s a lot less than the cuts that happened. And so I talked to the organizations impacted, and it was clear that even though they’re getting this money back, for some it came too late, like they already closed their doors and shut down clinics in a lot of states, and they can’t reopen them with this chunk of money. This money is when you give a service to a patient, you can then submit for reimbursement. And so if the clinic’s not there, it’s not like they can use this money to, like, reopen the clinic, sign a lease, hire people, etc.  

Rovner: Yeah. The wheels of the courts, as we have seen, have moved very slowly. 

OK, we’re going to take a quick break. We will be right back. 

So while abortion gets most of the headlines, it’s not the only culture war issue in play. The Supreme Court this week heard oral arguments in a case challenging two of the 27 state laws barring transgender athletes from competing on women’s sports teams. Reporters covering the argument said it seemed unlikely that a majority of justices would strike down the laws, which would allow all of those bans to stand. Meanwhile, the other two branches of the federal government have also weighed in on the gender issue in recent weeks. The House passed a bill in December, sponsored by now former Republican congresswoman Marjorie Taylor Greene that would make it a felony for anyone to provide gender-affirming care to minors nationwide. And the Department of Health and Human Services issued proposed regulations just before Christmas that wouldn’t go quite that far, but would have roughly the same effect. The regulations would ban hospitals from providing gender-affirming care to minors or risk losing their Medicare and Medicaid funding, and would bar funding for gender-affirming care for minors by Medicaid or the Children’s Health Insurance Program. At the same time, Health and Human Services Secretary Kennedy issued a declaration, which is already being challenged in court, stating that gender-affirming care, quote, “does not meet professionally recognized standards of health care,” and therefore practitioners who deliver it can be excluded from federal health programs. I get that sports team exclusions have a lot of public support, but does the public really support effectively ending all gender-affirming care for minors? That’s what this would do. 

Edney: Well, I think that when a lot of people hear that, they think of surgery, which is the much, much, much, much, much less likely scenario here that we’re even talking about. And so those who are against it have done an effective job of making that the issue. And so there â€¦ who support gender-affirming care, who have looked into it, would see that a lot of this is hormone treatment, things like that, to drugs â€¦  

Rovner: Puberty blockers! 

Edney: â€¦ they’re taking â€” exactly â€” and so it’s not, this isn’t like a permanent under-the-knife type of thing that a lot of people are thinking about, and I think, too, talking about, like mental health, with being able to get some of these puberty blockers, the effect that it can have on a minor who doesn’t want to live the way they’ve been living, so it’s so helpful to them. So I think that there’s just a lot that has, you know, there’s been a lot of misinformation out there about this, and I feel like that that’s kind of winning the day. 

Kenen: I think, like, from the beginning, because, like, five or six years ago was the first time I wrote about this. The playbook has been very much like the anti-abortion playbook. They talk about it in terms of protecting women’s health, and now they’re talking about it in protecting children’s health. And, as Anna said, they’re using words like mutilation. Puberty blockers are not mutilation. Puberty blockers are a medication that delays the onset of puberty, and it is not irreversible. It’s like a brake. You take your foot off the brake, and puberty starts. There’s some controversy about what age and how long, and there’s some possible bone damage. I mean, there’s some questions that are raised that need to be answered, but the conversation that’s going on now â€” most of the experts in this field, who are endocrinologists and psychologists and other people who are working with these kids, cite a lot of data saying that not only this is safe, but it’s beneficial for a kid who really feels like they’re trapped in the wrong body. So you know, I think it’s really important to repeat â€¦ the point that Anna made, you know, 12-year-olds are not getting major surgery. Very few minors are, and when they are, it’s closer â€¦ they may be under 18, it’s rare. But if you’re under 18, you’re closer to 18, it’s later in teens. And it’s not like you walk into an operating room and say, you know, do this to me. There’s years of counseling and evaluation and professional teams. It really did strike a nerve in the campaign. I think Pennsylvania, in particular. This is something that people don’t understand and get very upset about, and the inflammatory language, it’s not creating understanding. 

Rovner: We’ll see how this one plays out. Finally, this week, things at the Department of Health and Human Services continues to be chaotic. In the latest round of “we’re cutting you off because you don’t agree with us,” the Substance Abuse and Mental Health Services Administration sent hundreds of letters Tuesday to grantees canceling their funding immediately. It’s not entirely clear how many grants or how much money was involved, but it appeared to be something in the neighborhood of $2 billion â€” that’s around a fifth of SAMHSA’s entire budget. SAMHSA, of course, funds programs that provide addiction and mental health treatment, treatment for homelessness and suicide prevention, among other things. Then, Wednesday night, after a furious backlash from Capitol Hill and just about every mental health and substance abuse group in the country, from what I could tell from my email, the administration canceled the cuts. Did they miscalculate the scope of the reaction here, or was chaos the actual goal in this?  

Edney: That is a great question. I really don’t know the answer. I don’t know what it could serve anyone by doing this and reversing it in 24 hours, as far as the chaos angle, but it does seem, certainly, like there was a miscalculation of how Congress would react to this, and it was a bipartisan reaction that wanted to know why, what is it even your justification? Because these programs do seem to support the priorities of this administration and HHS. 

Rovner: I didn’t count, but I got dozens of emails yesterday.  

Edney: Yeah. 

Rovner: My entire email box was overflowing with people basically freaking out about these cuts to SAMHSA. Joanne, you wanted to say something? 

Kenen: I think that one of the shifts over â€” I’m not exactly sure how many years â€” 7, 8, 9, years, whatever we’ve been dealing with this opioid crisis, the country has really changed and how we see addiction, and that we are much more likely to view addiction not as a criminal justice issue, but as a mental health issue. It’s not that everybody thinks that. It’s not that every lawmaker thinks that, but we have really turned this into, we have seen it as, you know, a health problem and a health problem that strikes red states and blue states. You know, we are all familiar with the “deaths of despair.” Many of us know at least an acquaintance or an acquaintance’s family that have experienced an overdose death. This is a bipartisan shift. It is, you know, you’ve had plenty of conservatives speaking out for both more money and more compassion. So I think that the backlash yesterday, I mean, we saw the public backlash, but I think there was probably a behind-the-scenes â€” some of the “Opioid Belts” are very conservative states, and Republican governors, you know, really saying we’ve had progress. Right? The last couple of years, we have made progress. Fatal overdoses have gone down, and Narcan is available. And just like our inboxes, I think their telephones, they were bombarded.  

Rovner: Yeah. Well, meanwhile, several hundred workers have reportedly been reinstated at the National Institute of Occupational Safety and Health â€” that’s a subagency of CDC [the Centers for Disease Control and Prevention]. Except that those RIF [reduction in force] cancellations came nine months after the original RIFs, which were back in April. Does the administration think these folks are just sitting around waiting to be called back to work? And in news from the National Institutes of Health, Director Jay Bhattacharya told a podcaster last week that the DEI-related [diversity, equity, and inclusion] grants that were canceled and then reinstated due to court orders are likely to simply not be renewed. And at the FDA, former longtime drug regulator Richard Pazdur said at the J.P. Morgan [Healthcare] Conference in San Francisco this week that the firewall between the political appointees at the agency and its career drug reviewers has been, quote, “breached.” How is the rest of HHS expected to actually, you know, function with even so much uncertainty about who works there and who’s calling the shots? 

Ollstein: Not to mention all of this back and forth and chaos and starting and stopping is costing more, is costing taxpayers more. Overall spending is up. After all of the DOGE [Department of Government Efficiency] and RIFs and all of it, they have not cut spending at all because it’s more expensive to pay people to be on administrative leave for a long time and then try to bring them back and then shut down a lab and then reopen a lab. And all of this has not only meant, you know, programs not serving people, research not happening, but it hasn’t even saved the government any money, either. 

Kenen: Like, you know, the game we played when we were kids, remember, “Red Light-Green Light,” you know, you’d run in one direction, you run back. And if you were 8 years old, it would end with someone crying. And that’s sort of the way we’re running the government these days [laughs]. The amount of people fired, put on leave. The CDC has had this incredible yo-yoing of people. You can’t even keep track. You don’t even know what email to use if you’re trying to keep in touch with them anymore. The churn, with what logic? It’s, as Alice said, just more expensive, but it’s, it’s also just â€¦ like you can’t get your job done. Even if you want a smaller government, which many of conservatives and Trump people do, you still want certain functions fulfilled. But there’s still a consensus in society that we need some kind of functioning health system and health oversight and health monitoring. I mean, the American public is not against research, and the American public is not against keeping people alive. You know, the inconsistency is pretty mind-boggling. 

Edney: Well, there’s a lot of rank-and-file, but we’re seeing a lot of heads of parts of the agencies where, like at the FDA, with the drug center, or many of the different institutes at NIH that really don’t have anyone in place that is leading them. And I think that that, to me, like this is just my humble opinion, is it kind of seems like the message as anybody can do this part, because it’s all coming from one place. There’s really just one leader, essentially, RFK, or maybe it’s Trump, or they want everyone to do it the way that they’re going to comply with the different, like you said, everyone wants research, but I, Joanne, but I do think they only want certain kinds of research in this case. So it’s been interesting to watch how many leaders in these agencies that are going away and not being replaced. 

Rovner: And all the institutional memory that’s walking out the door. I mean, more people â€” and to Alice’s point about how this hasn’t saved money â€” more people have taken early retirement than have been actually, you know, RIF’d or fired or let go. I mean, they’ve just â€¦ a lot of people have basically, including a lot of leaders of many of these agencies, said, We just don’t want to be here under these circumstances. Bye. Assuming at some point this government does want to use the Department of Health and Human Services to get things done, there might not be the personnel around to actually effectuate it. But we will continue to watch that space. 

OK, that’s this week’s news. Now we will play my “Bill of the Month” interview with Elisabeth Rosenthal, and then we will come back and do our extra credits. 

I am pleased to welcome back to the podcast Elisabeth Rosenthal, senior contributing editor at KFF Health News and originator of our “Bill of the Month” series, which in its nearly eight years has analyzed nearly $7 million in dubious, infuriating, or inflated medical charges. Libby also wrote the latest “Bill of the Month,” which we’ll talk about in a minute. Libby, welcome back to the podcast. 

Elisabeth Rosenthal: Thanks for having me back. 

Rovner: So before we get to this month’s patient, can you reflect for a moment on the impact this series has had, and how frustrated are you that eight years on, it’s as relevant as it was when we began? 

Rosenthal: We were worried it wouldn’t last a year, and here we are, eight years later, still finding plenty to write about. I mean, we’ve had some wins. I think we helped contribute to the No Surprises Act being passed. There are states clamping down on facility fees, you know, and making sure that when you get something done in a hospital rather than an outpatient clinic, it’s the same cost. The country’s starting to address drug prices. But, you know, we seem to be the billing police, and that’s not good. We’ve gotten a lot of bills written off for our individual patients. Suddenly, when a reporter calls, they’re like, Oh, that was a mistake or Yeah, we’re going to write that off. And I’m like, You’re not writing that off; that shouldn’t have been billed. So sadly, the series is still going strong, and medical billing has proved endlessly creative. And you know, I think the sad thing for me is our success is a sign of a deeply, deeply dysfunctional system that has left, as we know, you know, 100 million adult Americans with medical debt. So we will keep going until it’s solved, I hope. 

Rovner: Well, getting on to this month’s patient, he gives new meaning to the phrase “It must have been something I ate.” Tell us what it was and how he ended up in the emergency room. 

Rosenthal: Well, Maxwell [Kruzic] loves eating spicy foods, but he’s never had a problem with it. And suddenly, one night, he had just excruciating, crippling abdominal pain. He drove himself to the emergency room. It was so bad he had to stop three times, and when he got there, it was mostly on the right-lower quadrant. You know, the doctors were so convinced, as he was, that he had appendicitis, that they called a surgeon right away, right? So they were all like, ready to go to the operating room. And then the scan came back, and it was like, whoops, his appendix is normal. And then, oh, could he have kidney stones? And it’s like no sign of that either. And finally, he thought, or someone asked, Well, what did you eat last night? And of course, Maxwell had ordered the hottest chili peppers from a bespoke chili pepper-growing company in New Mexico. They have some chili pepper rating of 2 million [Scoville heat units], which is, like, through the roof, and it was a reaction to the chili peppers. I didn’t even know that could happen, and I trained as a doctor, but I guess your intestines don’t like really, really, really hot stuff. 

Rovner: So in the end, he was OK. And the story here isn’t even really about what kind of care he got, or how much it cost. The $8,000 the hospital charged for his few hours in the ER doesn’t seem all that out of line compared to some of the bills we’ve seen. What was most notable in this case was the fact that the bill didn’t actually come until two years later. How much was he asked to pay two years after the hot pepper incident? 

Rosenthal: Well, he was asked to pay a little over $2,000, which was his coinsurance for the emergency room visit. And as he said, you know, $8,000 â€¦ now we go, well, that’s not bad. I mean, all they did, actually, was do a couple of scans and give him some IV fluids. But in this day and age, you’re like, wow, he got away â€” you know, from a “Bill of a Month” perspective, he got away cheap, right? 

Rovner: But I would say, is it even legal to send a bill two years after the fact? Who sends a bill two years later? 

Rosenthal: That’s the problem, like, and Maxwell â€” he’s a pretty smart guy, so he was checking his portal repeatedly. I mean, he paid something upfront at the ER, and he kept thinking, I must owe something. And he checked and he checked and he checked and it kept saying zero. He actually called his insurer and to make sure that was right. And they said, No, no, no, it’s right. You owe zero. And then, you know, after like, six months, he thought, I guess I owe zero. But then he didn’t think about it, and then almost two years later, this bill arrives in the mail, and he’s like, What?! And what I discovered, which is a little disturbing, is it is not, I wouldn’t say normal, but we see a bunch of these ghost bills at “Bill of the Month,” and in many cases, it’s legal, because of what was going on in those two-year periods. And of course, I called the hospital, I called the insurer, and they were like, Yeah, you know, someone was away on vacation, and someone left their job, and we couldn’t â€¦ you know, the hospital billed them correctly. And the hospital said, No, we didn’t. And they were just kind of doing the usual back-end negotiations to figure out what a service is worth. And when they finally agreed two years later what should be paid, that’s when they sent Maxwell the bill. And the problem is, whether it’s legal really depends on your insurance contracts, and whether they allow this kind of late billing. I do not know to this day if Maxwell’s did, because as soon as I called the insurer and the hospital, they were like, Never mind. He doesn’t owe anything. And you know, as he said, he’s a geological engineer. He has lots of clients, and as he said, you know, if I called them two years later and said, Whoops, I forgot to bill for something, they would be like, Forget it! you know. So I do think this is something that needs to be addressed at a policy level, as we so often discover on “Bill of the Month.” 

Rovner: So what should you do if you get one of these ghost bills? I should say I’m still negotiating bills from a surgery that I had six months ago. So I guess I should count myself lucky. 

Rosenthal: Well, I think you should check with your insurer and check with the hospital. I think more with your insurer â€” if the contract says this is legal to bill. It’s unclear to me, in this case, whether it was. The hospital was very much like, Oh, we made a mistake; because it took so long, we actually couldn’t bill Maxwell. So I think in his case, it probably was in the contract that this was too late to bill. But, you know, I think a lot of hospitals, I hate to say it, have this attitude. Well, doesn’t hurt to try, you know, maybe they’ll pay it. And people are afraid of bills, right? They pay them.  

Rovner: I know the feeling. 

Rosenthal: Yeah, I do think, you know, they should check with their insurer about whether there’s a statute of limitations, essentially, on billing, because there may well be and I would say it’s a great asymmetry, because if you submit an insurance claim more than six months late, they can say, Well, we won’t pay this. 

Rovner: And just to tie this one up with a bow, I assume that Maxwell has changed his pepper-eating ways, at least modified them? 

Rosenthal: He said he will never eat scorpion peppers again. 

Rovner: Libby Rosenthal, thank you so much. 

Rosenthal: Oh, sure. Thanks for having me. 

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 post the links in our show notes on your phone or other mobile device. Anna, why don’t you start us off this week? 

Edney: Sure. So my extra credit is from MedPage Today: “.” I appreciated this article because it answered some questions that I had, too, after the sweeping change to the childhood vaccine schedule. There was just a lot of discussions I had about, you know, well, what does this really mean on the ground? And will parents be confused? Will pediatricians â€” how will they be talking about this? You know, will they stick to the schedule we knew before? And there was an article in JAMA Perspectives that lays out, essentially, to clinicians, you know, that they should not fear malpractice .. issues if they’re going to talk about the old schedule and not adhere to the newer schedule. And so it lays out some of those issues. And I thought that was really helpful. 

Rovner: Yeah, this was a big question that I had, too. Alice, why don’t you go next? 

Ollstein: Yeah, so I have a piece from ProPublica. It’s called “.” So this is about how there’s been this huge push on the right to end public water fluoridation that has succeeded in a couple places and could spread more. And the proponents of doing that say that it’s fine because there are all these other sources of fluoride. You can get a treatment at the dentist, you can get it in stuff you buy at the drugstore and take yourself. But at the same time, the people who arepushing for ending fluoridated public drinking water are also pushing for restricting those other sources. There have been state and federal efforts to crack down on them, plus all of the just rhetoric about fluoride, which is very misleading. It misrepresents studies about its alleged neurological impacts. But it also, that kind of rhetoric makes people afraid to have fluoride in any form, and people are very worried about that, what that’s going to do to the nation’s teeth? 

Rovner: Yeah, it’s like vaccines. The more you talk it down, the less people want to do it. Joanne. 

Kenen: This is a piece by Dhruv Khullar in The New Yorker called “,” and it was really great, because there’s certain things I think that we who â€” like, I don’t know how all of you watch it â€” but like, there’s certain things that didn’t even strike me, because I’m so used to writing about, like, the connection between poverty, social determinants of health, and, like, of course, people who come to the ED [emergency department] have, you know, homelessness problems and can’t afford food and all that. But Dhruv talked about how it sort of brought that home to him, how our social safety net, the holes in it, end up in our EDs. And he also talked about some of it is dramatized more for TV, that not everybody’s heart stops every 15 minutes. He said that sort of happens to one patient a day. But he talked about compassion and how that is rediscovered in this frenetic ED/ER scene. It’s just a very thoughtful piece about why we all love that TV show. And it’s not just because of Noah Wyle. 

Rovner: Although that helps. My extra credit this week is from The New York Times. It’s called “,” by Maxine Joselow. And while it’s not about HHS, it most definitely is about health. It seems that for the first time in literally decades, the Environmental Protection Agency will no longer calculate the cost to human health when setting clean air rules for ozone and fine particulate matter, quoting the story: “That would most likely lower costs for companies while resulting in dirtier air.” This is just another reminder that the federal government is charged with ensuring the help of Americans from a broad array of agencies, aside from HHS â€” or in this case, not so much.  

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

Ollstein: Mostly on Bluesky  and still on X . 

Rovner: Joanne. 

Kenen: I’m mostly on  or on  . 

Rovner: Anna. 

Edney:  or X . 

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