KFF Health News’ ‘What the Health?’
Episode Title: Trump Puts Obamacare Repeal Back on Agenda
Episode Number: 324
Published: Nov. 30, 2023

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Nov. 30, at 10 a.m. As always, news happens fast, and things might’ve changed by the time you hear this. So, here we go.

We are joined today via video conference by Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Hi, Julie.

Rovner: Victoria Knight of Axios News.

Victoria Knight: Hello, everyone.

Rovner: And Joanne Kenen of the Johns Hopkins University and Politico Magazine.

Joanne Kenen: Hi, everybody.

Rovner: Later in this episode we’ll have my interview with my colleague Rachana Pradhan about the latest KFF Health News-NPR “Bill of the Month.” This month’s patient fell into an all-too-common trap of using a lab suggested by her doctor’s office for routine bloodwork without realizing she might be left on the hook for thousands of dollars. But first, this week’s news — and last week’s, too, because we were off.

Because nothing is ever gone for good, the effort to repeal and replace Obamacare is back in the news, and it’s coming primarily from the likely Republican presidential nominee, Donald Trump. Just to remind you, in case you’ve forgotten, Trump, during his presidency, even in the two years that Republicans controlled the House and the Senate, was unable to engineer a repeal of the Affordable Care Act, nor did his administration even manage to unveil an alternative. So what possible reason could he have for thinking that this is going to help him politically now?

Knight: My takeaway is that I think it’s a personal grudge that former President Trump still has, that he failed at this. And I think, when you talk to people, he’s still mad that Sen. John McCain did his famous thumbs-down when the rest of the Republican Party was on board. So I’m not sure that there is much political strategy besides wanting to just make it happen finally, because upset it didn’t happen.

Rovner: Is this part of his revenge tour?

Knight: I mean, I think somewhat. Because if you ask House Freedom Caucus people, they will say, “Yeah, we should repeal it.” But if you ask some more moderate Republican members, they’re like, “We’ve already been through that. We don’t want to do it again.” So I don’t think the Republican Party on the Hill has an appetite to do that, even if Congress goes to Republicans in both chambers.

Kenen: Trump never came up with a health plan and repeal died in the Senate, but remember, it was a struggle to even get anything through the House, and what the House Republicans finally voted for, they didn’t even like. So I don’t know if you call this a revenge tour, but it’s checking a box. But I think it’s important to remember that if you look closely at what Republican policies are, they don’t call it repeal, they don’t say, “We are going to repeal it.” That didn’t go so well for them, and it probably cost them an election.

But they still do have a lot of policy ideas that would water down or de facto repeal many key provisions of Obamacare. So they haven’t tried to go that route, and I’m not sure they would ever try a full-out repeal, but there are lots of other things they could do, some of which would have technical names: community rating and things like that, that voters might not quite understand what they were doing, that could really undermine the protections of Obamacare.

Rovner: Yeah, I mean, I was going to say the Republican Party, in general, this has been the running joke since they started “repeal and replace” in 2010, is that they haven’t had the “replace” part of “repeal and replace” at all. Trump kept saying he was going to have a great plan, it’s coming in two weeks, and, of course, now he’s saying he’s going to have a great plan. We’ve never seen this great plan because the Republicans have never been able to agree on what should come next. Aside from, as Joanne says, tinkering around with the Affordable Care Act.

Kenen: Some of that tinkering would be significant.

Rovner: It could be.

Kenen: I mean there are things that they could tinker that wouldn’t be called repeal, but would actually really make the ACA not work very well.

Rovner: But most of the things that the Republicans wanted to do to the ACA have already been done, like repealing the individual mandate, getting rid of a lot of the industry-specific taxes that they didn’t like.

Kenen: Right. So they ended up getting rid of the spinach and they end up with the stuff that even Republicans, they might not say they like the ACA, but they’re being protected by it. And the individual mandate was the single-most unpopular, contentious part of the law and even a lot of Democrats didn’t like it. And so that target of the animus is gone. So by killing part of it, they also made it harder to do things in the future. They could do damage, though.

Rovner: Yeah. Or they could take on entitlements which, of course, is where the real money is. But we’ll get to that in a minute. Sarah, we have not seen you in a while, so we need to catch up on a bunch of things that are FDA-related. First, a couple of payment items since you were last here. The FDA has, as expected, approved a weight loss version of the diabetes drug Mounjaro that appears to be even more effective than the weight loss version of Ozempic. But insurers are still very reluctant to pay for these drugs, which are not only very expensive, they appear to need to be consumed very long-term, if not forever. Medicare has so far resisted calls to cover the drugs, despite some pressure from members of Congress, but that might be about to change.

Karlin-Smith: I think Medicare is getting a lot of pressure. They’re going to have to probably re-look at it at some point. What I found interesting is recently CMS [the Centers for Medicare and Medicaid Services] regulates other types of health plans as well, and in the ACA space they seem to be pushing for coverage of these obesity drugs. And I think they’re thinking around that. They note that the non-coverage allowance for these ACA plans was based on … they were following what Medicare was doing and there’s some acknowledgment that maybe the non-Medicare population is different from the Medicare population. But I think it’s also worth thinking about some of their other reasoning for coverage there, including that these drugs are different than some of the older weight loss drugs that provided more minimal weight loss, had worse side effects, and it came at a time when weight loss was seen as more of a cosmetic issue. So if that ACA provision rule goes through, I think that does help the case for people pushing for coverage in Medicare Part D of these drugs.

Rovner: Yeah, I mean this seems to be one of these “between a rock and a hard place” … that the demand for these drugs is huge. The evidence suggests that they work very well and that they work not just to help people lose weight, but perhaps when they lose weight to be less likely to have heart attacks and strokes and all that other stuff that you don’t want people to have. On the other hand, at the moment, they are super expensive and would bankrupt insurance companies and Medicare.

Karlin-Smith: Right. I mean, we’ve seen this before where people worry there’s a new class of expensive drugs that a lot of people seem like they will need and it’s going to bankrupt the country, and oftentimes that doesn’t happen even whether it is, in theory, more coverage to some extent. We saw that with hep C. There was a new class of cholesterol drugs that came out a few years ago that just haven’t taken off in the way people worried they would. Some of these obesity drugs, they do work really well, not everybody really tolerates them as well as you would think. So there’s questions about whether that demand is really there. Sen. [Bill] Cassidy [R-La.] has made some interesting points about “Is there a way to use these drugs initially for people and then come up with something more for weight maintenance that wouldn’t be as expensive?”

Rovner: We should point out that Sen. Cassidy is a medical doctor.

Karlin-Smith: But I think the pressure is coming on the government. Recently, I got to hear the head of OPM [Office of Personnel Management], who deals with the insurance coverage for federal government employees, and they have a really permissible coverage of obesity drugs. Basically, they require all their health insurance plans to cover one of these GLP-1 drugs, and they have some really interesting language I’ve seen used by pharmaceutical companies to say, “Look, this part of the federal government has said obesity is a disease. It needs to be treated,” and so forth. So I don’t think the federal government is going to be able to use this argument of, “This is not a medical condition, and these are expensive, we’re not going to cover it.” But there’s definitely going to be tensions there in terms of costs.

Rovner: Well, definitely more to come here. Meanwhile, CMS is also looking at changing the rules, again, for some pharmacy copay assistance programs, which claim to assist patients but more often seem to enrich drug companies and payers. What is this one about? And can you explain it in English? Because I’m not sure I understand it.

Karlin-Smith: So most people, when you get a prescription for a drug, have some amount of copay, so your insurance company pays the bulk of the cost and you pay maybe $10, $20, $30 when you pick up your prescription. For really high-cost drugs, pharmaceutical companies and sometimes third-party charities often offer copay support, where they will actually pay your copay for you.

The criticism of these charities and pharma support is that it lets the companies keep the prices higher. Because once you take away the patient feeling the burden of the price, they can still keep that higher percentage that goes to your health plan and into your premiums that you don’t think about. And so health insurance companies have said, “OK, well we’re not going to actually count this coupon money towards your copay, your out-of-pocket max for the year, because you’re not actually paying it.”

So that doesn’t end up doing the patient much good in the end because, while you might get the drug for free the first part of the year, eventually you end up having to pay the money. The courts have weighed in, and the latest ruling was that the effect of it was essentially telling CMS, “You need to re-look at your rules. We don’t think your logic is consistent,” and they seem to potentially suggest that CMS should only allow copay accumulators if there’s a cheaper drug a patient could take.

So, basically, they’re saying it’s unfair to put this burden on patients and not let them benefit from the coupons if this is the only drug they can take. But if there’s a generic drug they should be taking, that’s the equivalent then, OK, insurance company, you can penalize them there. But interestingly, CMS has basically pushed back on the court ruling. They’re asking them for basically more information about what they’re exactly directing them to do and signaling that they want to keep their broader interpretation of the law.

It’s a tricky situation, I think, policy-wise, because there’s this tension of, yes, the drug prices are really high. The insurance companies have a point of how these coupons create these perverse incentives in the system, and, on the other hand, the person that gets stuck in the middle, the patient is not really the fair pawn in this game. And when talking about a similar topic with somebody recently, they brought up what happened with surprise billing and they made this parallel of we need to think about it as, OK, you big corporate entities need to figure out how to duke out this problem, but stop putting the patient in the middle because they’re the one that gets hurt. And that’s what happened in surprise billing. I’m not sure if there’s quite that solution of how you could do that in this pharmaceutical space though.

Rovner: I was just going to say that this sounds exactly like surprise billing, but for prescription drugs. Well, while we are talking about Capitol Hill, let’s turn to Capitol Hill, where the big news of the week is that House Republican conservatives, the so-called Freedom Caucus, have apparently agreed to abide by the deal they agreed to abide by earlier this year. At least that’s when it comes to the overall total for the annual spending bills. Then-Speaker [Kevin] McCarthy’s attempt to adhere to that deal is one of the things that led to his ouster. The conservatives had wanted to cut spending much more deeply than the deal that was cut, I think it was in May. Although I feel compelled to add: Cutting the appropriations bills, which is what we’re talking about here, doesn’t really do very much to help the federal budget deficit. Most of the money that the federal government spends doesn’t go through the appropriations process. It’s automatic, like Social Security and Medicare.

But I digress. Victoria, what prompted the Freedom Caucus to change their minds and what does that portend for actually getting some of these spending bills done before the next cutoff deadline, which is mid-January?

Knight: I mean, I think it’s the Freedom Caucus just facing reality and that it’s really hard to do budget cuts, and a lot of these bills, the cuts are very deep. For the Labor-HHS bill, which is the bill that funds the Department of Health and Human Services, the cut is 18%. To the CDC [Centers for Disease Control and Prevention], 12% to the department itself. Those are really big cuts. And all the bills, you look at them, they all have really deep cuts.

The agriculture bill has deep cuts to the Department of Agriculture that some moderate Republicans don’t like. So all of the bills have these issues, and so I think they’re realizing it is just not possible to get what they want. Some of them didn’t vote for the Fiscal Responsibility Act, which was the deal that former Speaker McCarthy did with the debt limit that set funding levels. So they’re not necessarily going back on something that they voted for.

Rovner: They’re going back on something that the House voted for.

Knight: Yeah. So yeah, I think they’re just realizing the appropriations process, it’s difficult to make these deep spending cuts. I’ve also heard rumors that there might still be a big omnibus spending bill in January. Despite all this talk of doing the individual appropriations bills, I’ve heard that it may end up, despite all the efforts of the Republican Caucus, it may end where they have to just do a big bill because this is the easiest thing to do and then move on to the rest of the business of Congress for the next year. So we’ll see if that happens. But I have heard some rumors already swirling around that.

Rovner: I mean the idea they have now “agreed” to a spending limit that should have been done in the budget in April, which would’ve given them several months to work on the appropriations bills coming in under that level. And, of course, now we’re almost three months into the new fiscal year, so I mean they’re going to be late starting next year unless they resolve this pretty soon. But in the meantime, one thing that won’t happen is that we won’t get a big omnibus bill before Christmas because the deadline is now not until January, and that’s important for a bunch of health issues because we have a lot of policies that are going to end at the end of the year. Things like putting off cuts in Medicare payments to doctors, which a lot of people care about, including, obviously, all the doctors. Is there a chance that some of these “extender provisions” will find their way onto something else, maybe the defense authorization bill that I think they do want to finish before Christmas?

Knight: Yeah, I think that’s definitely possible. I’ve also heard they can retroactively do that, so even if they miss the deadline, it will probably be fixed. So it doesn’t seem like too big a worry,

Rovner: Although those doctor cuts, I mean, what happens is that CMS pens the claims, they don’t pay the claims until it’s been fixed retroactively. They have done it before, it’s a mess.

Kenen: And it’s bad for the doctors because they don’t get paid. It takes even longer to get paid because they’re put in a hold pile, which gets rather large.

Rovner: It does. Not that the defense bill doesn’t have its own issues around defense, but while we’re on the subject of defense, it looks like Alabama Republican Sen. Tommy Tuberville might be ready to throw in the towel now on the more than 400 military promotions he’s been blocking to protest the Biden administration’s policy allowing members of active-duty military and their dependents to travel to other states for an abortion if it’s banned where they are stationed. This has been going on since February. My impression is that it’s his fellow Republicans who are getting worried about this.

Kenen: Yeah. They’re as fed up as the Democrats are now. Not 100% of them are, but there’s a number who’ve come out in public and basically told him to cut it out. And then there are others who aren’t saying it in public, but there are clearly signs that they’re not crazy about this either. But we keep hearing it’s about to break. We’ve been hearing for several weeks it’s about to be resolved, and until it’s resolved, it’s not resolved. So I think clearly there’s movement because the pressure has ramped up from his fellow Republicans.

Rovner: Well, to get really technical, I think that the Senate Rules Committee passed a resolution that could get around this whole thing-

Kenen: But they don’t really want to, I mean the Republicans would rather not confront him through a vote. They’d rather just stare him down and get him to pretend that he won and move on. And that’s what we’re waiting to see. Is it a formal action by the Senate or is there some negotiated way to move forward with at least a large number of these held-up nominations.

Rovner: It’s the George Santos-Bob Menendez health issue. In other words, they would like him to step down himself rather than have to vote to take it down, but they would definitely like him to back off.

Kenen: I mean, not confusing anybody but they’re not talking about expelling her from the Senate. They’re [inaudible] talking about “Cut this out and let these people get their promotions,” because some of them are very serious. These are major positions that are unfilled.

Rovner: Yes, I mean it’s backing up the entire military system because people can’t move on to where they’re supposed to go and the people who are going to take their place can’t move on to where they’re supposed to go, and it’s not great for the Department of Defense. All right, well, while we are on the subject of abortion, at least tangentially, the Texas Supreme Court this week heard that case filed by women who had serious pregnancy complications for which they were unable to get medical care because their doctors were afraid that Texas’ abortion ban would be used to take their medical licenses and/or put them in jail.

Kenen: For 99 years!

Rovner: Yeah, the Texas officials defending against the lawsuit say the women shouldn’t be suing the state. They should be suing their doctors. So what do we expect to happen here? This hearing isn’t even really on the merits. It’s just on whether the exceptions the lower court came up with will be allowed to take effect, which at the moment they’re not.

Kenen: The exception-by-exception policy, where things get written in, is problematic because it’s hard to write a law allowing every possible medical situation that could arise and then that would open it to all other litigation because people would disagree about is this close to death or not? So the plaintiffs want a broader, clearer exception where it’s up to the doctors to do what they think is correct for their patients’ health, all sorts of things can go wrong with people’s bodies.

It’s hard to legislate, which is OK and which isn’t. So the idea of suing your doctor, I mean, that’s just not going to go anywhere. I mean, the court is either going to clarify it or not clarify it. Either way, it’ll get appealed. These issues are not going away. There’s many, many, many documented cases of people not being able to get standard of care. Pregnancy complications are rare, but they’re serious and the state legislatures have been really resistant so far to broadening these exemptions.

Rovner: It’s not just Texas. ProPublica published an investigation this week that found that none of the dozen states with the strictest abortion bans broadened exceptions even after women and their doctors complained that they were being put at grave risk, as Joanne just pointed out. When we look at elections and polls, it feels like the abortion rights side very much has the upper hand, but the reverse seems to be the case in actual state legislatures. I mean, it looks like the anti-abortion forces who want as few exceptions as possible are still getting their way. At least that’s what ProPublica found.

Kenen: Right. One of the other points that the ProPublica piece made was many of these laws were trigger laws. They were written before Roe was toppled. They were written as just in case, if the Supreme Court lets us do this, we’ll do it. So they were symbolic and they were not necessarily written with a lot of medical input. And they were written by activists, not physicians or obstetricians.

And the resistance to changing them is coming from the same interest groups that want no abortions, who say it’s just not ever medically necessary or so rarely medically necessary, and it is medically necessary at times. I mean, there are people who, and this line saying, “Well, if you’re in trouble, you can’t have an abortion. But if you’re close to death you can,” that can happen in split seconds. You can be in trouble and then really be in real trouble. You can’t predict the course of an individual, and it’s tying the hands for physicians to do what needs to be done until it might be too late.

Knight: I think a lot of them don’t realize, until it starts happening, how many times it is sometimes medically necessary. It’s not even that a woman necessarily wants to get an abortion, it’s just something happens, and it’s safer for her to do that in order to save her life.

Karlin-Smith: And you’ve seen in some of these states, sometimes Republican women prominently coming out and pushing for this and trying to explain why it’s necessary. In some cases, they also have made the argument, too, that sometimes to preserve a woman’s fertility, these procedures are necessary given the current situations they face.

Kenen: There was a quote in that ProPublica story, and it’s not necessarily everybody on the anti-abortion rights side, but this individual was quoted as saying that the baby’s life is more important than the mother’s life. So that’s a judgment that a politician or activist is making. Plus, if the mother dies, the fetus can die too. So it doesn’t even make sense. It’s not even choosing one. I mean, in many cases if the pregnant person dies, the fetus will die.

Rovner: Well, finally this week, I want to give a shout-out to a story by my KFF Health News colleague Darius Tahir, who, by the way, became a father this week. Congratulations, Darius. The story’s about a group called the Progressive Anti-Abortion Uprising that purports to be both anti-abortion and progressively leftist and feminist. One of its goals appears to be to get courts to overturn the federal law that restricts protests in front of abortion clinics. The Freedom of Access to Clinic Entrances Act, known as FACE, is I think the only explicitly abortion rights legislation that became law in the entire 1990s, which makes you wonder if this group is really as leftist and feminist as it says it is, or if it’s just a front to try and go after this particular law.

Kenen: It sets limits of where people can be and tries to police it somewhat. But in Darius’ story, his reporting showed that they did, at least some of them, had ties to right-wing groups. So that they’re calling themselves leftist and progressive … it’s not so clear how accurate that is for everybody involved.

Rovner: Yeah, it was an interesting story that we will link to in the show notes. All right, now it is time for “This Week in Health Misinformation,” and it’s good news for a change. I chose a story from Stat News called “How to Spot When Drug Companies Spin Clinical Trial Results.” It’s actually an update of a 2020 guide that STAT did to interpret clinical trial results, and it’s basically a glossary to help understand company jargon and red flags, particularly in press releases, to help determine if that new medical “breakthrough” really is or not. It is really super helpful if you’re a layperson trying to make sense of this.

OK that is this week’s news, and I now will play my “Bill of the Month” interview with Rachana Pradhan, and then we will come back with our extra credits.

I am pleased to welcome back to the podcast my colleague Rachana Pradhan, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Always great to see you, Rachana.

Rachana Pradhan: Thanks for having me, Julie.

Rovner: So this month’s patient fell into what’s an all-too-common trap. She went to a lab for routine bloodwork suggested by her doctor without realizing she could be subjected to thousands of dollars in bills she’s expected to pay. Tell us who she is and how she managed to rack up such a big bill for things that should not have cost that much.

Pradhan: So our patient is Reesha Ahmed. She lives in Texas, just in a suburb of the Dallas-Fort Worth area, and what happened to Reesha is she found out she was pregnant and she went to a doctor’s office that she had never gone to before for a standard prenatal checkup, and she also had health insurance. I want to underscore that that is an important detail in this story. So the nurse recommended that Reesha get routine blood tests just down the hall in a lab that was in the adjoining hospital. And it was routine. There was nothing unusual about the blood tests that Reesha received. So what she was advised to do is after her checkup, she was told, “Well, here’s the bloodwork you need, and just go down the hallway here, into the hospital,” to get her blood drawn.

Rovner: How convenient, they have their own lab.

Pradhan: Exactly. And Reesha did what she was told. She got bloodwork done. And then, soon after that, she started getting bills. And they first were small amounts, like there was a bill for $17, and she thought, “OK, well that’s not so bad.” Then she got a bill for over $300 and thought, “That’s unusual. Why would I get billed this?” Then came the huge one. It was over $2,000. In total, Reesha’s overall lab work bills were close to $2,400 for, again, standard bloodwork that every pregnant woman gets when they find out that they’re pregnant. And so she, needless to say, was shocked and immediately actually started trying to investigate herself as to how it was possible for her to get billed such astronomical amounts.

Rovner: And so what did she manage to find out?

Pradhan: She tried taking it up with the hospital and her insurance company. And she just got passed around over and over again. She appealed to her insurance. They denied her appeal saying that, “Well, this bloodwork was diagnostic and not preventive, so it was coded correctly based on the claim that was submitted to us,” and the hospital even sent her to collections for this bloodwork. Unfortunately for Reesha, this pregnancy ended in a miscarriage, and so it was particularly difficult. She was dealing with all the emotional, physical ramifications of that, and then on top of that, having to deal with this billing nightmare is just a lot for any one person to handle. It’s too much, honestly.

Rovner: So we, the experts in this, what did we discover about why she got billed so much?

Pradhan: You can get bloodwork at multiple places in our health system. You could get it maybe within a lab just in your doctor’s office. You can go to an outside lab, like an independent commercial one, to get bloodwork done and you can sometimes get labs within a hospital building. They may not look any different when you’re actually in there, but there’s a huge difference as to how much they will charge you.

Research has shown that if a patient is getting blood tests done, things that are relatively routine and just as a standalone service, hospital outpatient department labs charge much, much more. There’s research that we cite in the story about Reesha that … she lives in Texas … bloodwork in Texas, if it’s done in a hospital outpatient department is at least six times as expensive compared to if you get those same tests in a doctor’s office or in an independent commercial lab.

Rovner: To be clear, I would say it’s not just bloodwork. It’s any routine tests that you get in a hospital outpatient department.

Pradhan: That research, in particular, was looking at blood tests actually, in particular, just any lab work that you might get done. So the conclusion of that is really that there’s no meaningful quality difference. There’s really no difference at all when you get them in a doctor’s office versus a hospital or a lab, and yet the prices you pay will vary dramatically.

Rovner: Yeah, there should be a big sign on the door that says: “This may be more convenient, but if you go somewhere else, you might pay a lot less and so will your insurance.” What eventually happened with Reesha’s bill?

Pradhan: Well, eventually, the charges were waived and zeroed out and she was told that she would not have to pay anything and all the accounts would be zeroed out to nothing.

Rovner: Eventually, after we started asking questions?

Pradhan: Yes. It was a day after I had sent a litany of questions about her billing that they gave her a call and said, “You now won’t have to pay anything.” So it’s a big relief for her.

Rovner: Obviously this was not her fault. She did what was recommended by the nurse in her doctor’s office, but there are efforts to make this more transparent.

Pradhan: Yeah. I think in health care policy world, the issue that she experienced is a reflection of something called site-neutral payment, which essentially means if payment is site-neutral for a health care provider, it means that you get a service and regardless of where you get that service, there is no difference in the amount that you are paying. There are efforts in Congress and even in state legislatures to institute site-neutral pay for certain services.

Bloodwork is one that is not necessarily being targeted, at least in Congress. But I will say, I think one of the big takeaways about what patients can do is if they do get paperwork from your doctor’s office saying, “OK, you need to get some blood tests done,” you can always take that bloodwork request and get it done at an independent lab where the charges will be far, far less than in a hospital-based lab, to avoid these charges.

Rovner: Think of it like a prescription.

Pradhan: Exactly. It might not be as convenient in that moment. You might have to drive somewhere, you can’t just walk down a hallway and get your blood tests and labs done, but I think you will potentially avoid exorbitant costs, especially for bloodwork that is very standard and is not costly.

Rovner: Yet another cautionary tale. Rachana Pradhan, thank you very much.

Pradhan: Thanks for having me, Julie.

Rovner: OK. We are back and it’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Sarah, you offered up the first extra credit this week. Why don’t you go first?

Karlin-Smith: Sure. I took a look at a ProPublica piece by Maya Miller and Robin Fields, “Insurance Executives Refused to Pay for the Cancer Treatment That Could Have Saved Him. This Is How They Did It.” And it tells the story of a Michigan man who had cancer, and the last resort treatment for him was CAR-T, which is a cellular therapy where they basically take some of your cells, reengineer them, and put them back into your body, and it is quite expensive and it can come with a lot of expensive side effects as well.

FDA considers it a drug, and Michigan state law requires cancer drugs be covered. The insurance company of this man, basically on a technicality, denied it, describing it as a gene therapy, and he did die before he was able to fully push this battle with the insurance company and get access to the treatment and so forth. But I think the piece raises these broader issues about [how] few states are able to proactively monitor whether insurance plans are properly implementing the laws around what is supposed to be covered and not covered.

Few people really have the knowledge or skill set, particularly when you’re dealing with devastating diseases like cancer, which are just taking all of your energy just to go through the treatment, to figure out how to fight the system. And it really demonstrates the huge power imbalances people face in getting health care, even if there are laws that, in theory, seem like they’re supposed to be protected.

I also thought there’s some really interesting statistics in the story about, yes, even though the price tag for these products are really expensive, that the health insurance company actually crunched the numbers and found that if they shifted the cost to premiums in their policyholders, it would lead to, like, 17 cents a month per premium. So I thought that was interesting, as well, because it gives you a sense of, again, where their motivation is coming from when you boil it down to how the costs actually add up.

Rovner: And we will, I promise, talk about the growing backlash against insurance company behavior next week. Victoria.

Knight: So my extra-credit article is a Business Insider story in which I’m quoted, but the title is “Washington’s Secret Weapon Is a Beloved Gen Z Energy Drink With More Caffeine Than God.” And it basically talks about the phenomenon of Celsius popping up around the Hill. So it’s an energy drink that contains 200 milligrams of caffeine. It tastes like sparkling water, it’s fruity, but it’s not like Monster or Red Bull. It tastes way better than them, which I think is partly why it’s become so popular.

But anyways, I’ve only been on the Hill reporting for about a year and in the past couple months it has really popped up everywhere. It’s all around in the different little stores within the Capitol complex, there’s machines devoted to it. So it talks about how that happened. And I personally drink almost one Celsius a day. I’m trying to be better about it, but the Hill is a hard place to work, and you’re running around all the time, and it just gets you as much caffeine as you need in a quick hit. But the FDA does recommend about 400 milligrams a day. So if you drink two, then you’re not going over the recommendation.

Rovner: Well, you can’t drink anything else with caffeine if you drink two.

Knight: That’s true. And I do drink coffee in the morning, but it has some funny quotes to our members of Congress and chiefs of staff and reporters about how we all rely on this energy drink to get through working on the Hill.

Rovner: I just loved this story because, forever, people wonder how these things happen in the middle of the night. It’s not the members, it’s the staff who are going 16 and 20 hours a day, and they’ve always had to rely on something. So, at least now, it’s something that tastes better.

Knight: It does taste better.

Rovner: That’s why it amused me, because it’s been ever thus that you cannot work the way Capitol Hill works without some artificial help, shall we say. Joanne.

Kenen: We used to just count how many pizza boxes were being delivered to know how long a night it was going to be. I guess now you count how many empty cans of Celsius.

Knight: Exactly.

Rovner: I personally ran more on sugar than caffeine.

Kenen: OK. This is a piece by Judy Graham of KFF Health News, and the headline is “A Life-Changing Injury Transformed an Expert’s View on Disability Services.” And it’s about a woman many of us know, actually Julie and I both know: Nora Super. I’ve known her for a long time. She’s an expert on aging. She ran one of the White House aging conferences. She worked at Milken for a long time. She worked at AARP for a while.

She’s in her late 50s now, and in midlife, she started having really severe episodes of depression, and she became very open about it, she became an advocate. Last summer, she had another episode and she couldn’t get an appointment for the treatment she needed quickly enough. And while she was waiting, which is the story of American health care right now, and while she was waiting for it, she did try to take her own life. She survived, but she now has no sensation from the waist down.

And her husband is a health economist, and I should disclose, my former boss at one point, I worked for and with Len for two years, Len Nichols. So this is a story about how she has now become an advocate for disability. And this is a couple with a lot of resources. I mean both knowledge, connections, and they’re not gazillionaires, but they have resources, and how hard it has been for them even with their resources and connections. And so now Nora who, when she’s well, she’s this effervescent force of nature, and this is how she is turning — her prognosis, it could get better, they don’t know yet — but clearly an extraordinarily difficult time. And she has now taken this opportunity to become not just an advocate for the aging and not just an advocate for people with severe depression, but now an advocate for people with severe disability.

Rovner: Yeah, I mean, it’s everything that’s wrong with the American health care system, and I will say that a lot of what I’ve learned about health policy over very many years came from both Len Nichols and Nora, his wife. So they do know a lot. And I think what shocked me about the story is just how expensive some of the things are that they need. And, again, this is a couple who should be well enough off to support themselves, but these are costs that basically nobody could or should have to bear.

Kenen: Even … it was just a lift to get her into their car, just that alone was $6,500. And there are many, many, many things like that. And then another thing that they pointed out in the article is that most physicians don’t have a way of getting somebody from a wheelchair onto the examining table other than having her 70-year-old husband hoist her. So that was one of the many small revelations in this story. Obviously, it’s heartbreaking because I know and like her, but it’s also another indictment of why we just don’t do things right.

Rovner: Yes. Where we are. Well, my story is yet another indictment of not doing things right. It’s by my colleagues Katheryn Houghton, Rachana Pradhan, who you just heard, and Samantha Liss, and it’s called “Medicaid ‘Unwinding’ Makes Other Public Assistance Harder to Get.” And it’s just an infuriating story pointing out that everything we’ve talked about all year with state reviews of Medicaid eligibility, the endless waits on hold with call centers, lost applications, and other bureaucratic holdups, goes for more than just health insurance. The same overworked and under-resourced people who determine Medicaid eligibility are also the gatekeepers for other programs like food stamps and cash welfare assistance, and people who are eligible for those programs are also getting wrongly denied benefits.

Among the people quoted in the story was DeAnna Marchand of Missoula, Montana, who is trying to recertify herself and her grandson for both Medicaid and SNAP (food stamps), but wasn’t sure what she needed to present to prove that eligibility. So she waited to speak to someone and picking up from the story, “After half an hour, she followed prompts to schedule a callback, but an automated voice announced slots were full and instructed her to wait on hold again. An hour later, the call was dropped.” It’s not really the fault of these workers. They cannot possibly do what needs to be done, and, once again, it’s the patients who are paying the price.

All right, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks this week to Zach Dyer for filling in as our technical guru while Francis [Ying] takes some much-deserved time off. Also, as always, you can email us your questions or comments. We are at whatthehealth@kff.org. Or you can still find me at X, for now, @jrovner, or @julierovner at Bluesky and Threads. Joanne.

Kenen: I’m mostly at Threads, @joannekenen1. Occasionally I’m still on X, but not very often, that’s @JoanneKenen.

Rovner: Sarah.

Karlin-Smith: I am @SarahKarlin, or @sarahkarlin-smith, depending on the platform.

Rovner: Victoria.

Knight: I am @victoriaregisk [on X and Threads]. Still mostly on X, but also on Threads at the same name.

Rovner: We’re all trying to branch out. We will be back in your feed next week. Until then, be healthy.