La encuesta de KFF, que se realizó con casi 6,300 pacientes que han estado recibiendo atención en los últimos tres años, encontró que alrededor del 55% de los adultos de raza negra sienten que deben tener mucho cuidado con su apariencia para ser tratados de manera justa por los médicos y otros proveedores de atención de salud.

Casi la mitad de los pacientes hispanos, los Indio americanos y los nativos de Alaska sienten lo mismo, al igual que aproximadamente 4 de cada 10 pacientes asiáticos.

En comparación, el 29% de los blancos no hispanos encuestados dijeron que se preocupaban por su apariencia antes de las citas.

“En 2023, la noción de que cualquier persona debe prepararse para sufrir discriminación es triste por un lado y enojoso por el otro”, dijo Burgess Harrison, director ejecutivo de la National Minority Health Association, en un correo electrónico . “El estrés que causa, además de cualquier problema de salud involucrado… es una locura”.

La discriminación ha sido durante mucho tiempo una preocupación tanto para los pacientes como para los proveedores de atención médica, en un país en donde las disparidades raciales en los resultados de salud son enormes y particularmente desfavorables para las personas negras.

Un hombre hispano de 30 años de Illinois, que respondió a la encuesta de KFF, dijo a los investigadores que cuando va a sus citas médicas usa ropa con el logo de la universidad en donde trabaja. Se dio cuenta que cuando los proveedores se enteran que es profesor, lo escuchan más atentamente y lo involucran más en las decisiones médicas, dijo.

Una mujer asiática de 44 años de California dijo que sus médicos varones, blancos no hispanos, ignoraron sus preocupaciones sobre sus problemas respiratorios y le dijeron que “probablemente estaba pensando demasiado en respirar”. Más tarde le diagnosticaron asma.

Los dos encuestados no fueron identificados con nombre y apellido en el estudio.

La encuesta ofrece “una manera de cuantificar realmente cuáles son esas experiencias con el racismo y la discriminación, y las múltiples formas en las que luego impactan en la vida de las personas”, dijo Samantha Artiga, directora del programa de políticas de salud y equidad racial de KFF.

“Para las personas que han estado siguiendo estos temas durante mucho tiempo, los hallazgos no son inesperados”, agregó. Otros hallazgos del sondeo fueron:

• Un tercio de los adultos informaron al menos una de varias experiencias negativas con un proveedor de atención médica en los últimos tres años, como que un profesional asumiera algo sobre ellos sin preguntar, o sugiriera que ellos eran los responsables de su problema de salud.
• Casi una cuarta parte de los adultos negros, el 19% de los adultos nativos de Alaska y nativos americanos, el 15% de los adultos hispanos y el 11% de los adultos asiáticos dijeron que creían que habían sufrido un trato negativo debido a su raza u origen étnico.
• El 22% de las embarazadas o que dieron a luz en los últimos 10 años, de raza negra, dijeron que les negaron los analgésicos que pensaban necesitaban. Sólo el 10% de los adultos blancos no hispanos en circunstancias similares informaron la misma queja.

Cuando las personas no se sienten respetadas o bienvenidas por sus proveedores de salud, es posible que eso los desanime a buscar ayuda médica o que cambien de proveedor con más frecuencia, dijo Artiga. Los pacientes de poblaciones minoritarias “experimentan peor salud como resultado de un trato injusto en el sistema de atención médica”, agregó.

La encuesta también encontró que la discriminación fuera del sistema de atención médica tenía consecuencias para la salud. Las personas que dijeron haber experimentado discriminación en su vida cotidiana informaron dos veces más seguido que a menudo se sentían ansiosas, solas o deprimidas en comparación con aquellas que rara vez o nunca habían enfrentado discriminación.

La encuesta encontró que las personas negras que reportaron tonos de piel más oscuros tenían más probabilidades de haber sufrido discriminación que aquellos con piel más clara. También reveló “cómo persisten y prevalecen las experiencias de racismo y discriminación hoy en día, en la vida diaria y también en la atención médica, a pesar del aumento de las alertas y el abordaje sobre el racismo”, dijo Liz Hamel, directora de investigación de encuestas y opinión pública de KFF.

La diversidad entre los proveedores de atención médica es importante, según la encuesta. La mayoría de las personas de minorías que participaron en la encuesta dijeron que menos de la mitad de sus visitas médicas en los últimos tres años fueron con un proveedor de su misma raza u origen étnico. Los que sí vieron a un médico de su misma raza o etnia tuvieron más probabilidades de informar mejores experiencias, como que su médico les explicara las cosas “de una manera que pudieran entender” o les preguntara sobre otros factores de salud como su empleo, vivienda y acceso a alimentos y transporte.

El 40% de los adultos negros que vieron a proveedores de su mi raza reportaron haber discutido temas sociales y económicos, mientras que solo el 24% dijo haber charlado sobre estos temas con proveedores de otras razas.

​Harrison, de la National Minority Health Association, escribió que “es vital un énfasis renovado en reclutar más personas de color en el campo de la atención médica”.

Agregó que la encuesta “ilustra dolorosamente que el prejuicio racial en la atención sanitaria es tan dañino como cualquier enfermedad”.

La “Encuesta sobre racismo, discriminación y salud” de KFF se realizó del 6 de junio al 14 de agosto en línea y por teléfono entre una muestra representativa a nivel nacional de adultos estadounidenses en inglés, español, chino, coreano y vietnamita.

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

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

Former president and current 2024 Republican front-runner Donald Trump is aiming to put a repeal of the Affordable Care Act back on the political agenda, much to the delight of Democrats, who point to the health law’s growing popularity.

Meanwhile, in Texas, the all-Republican state Supreme Court this week took up a lawsuit filed by more than two dozen women who said their lives were endangered when they experienced pregnancy complications due to the vague wording of the state’s near-total abortion ban.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of Johns Hopkins University and Politico Magazine, Victoria Knight of Axios, and Sarah Karlin-Smith of the Pink Sheet.

Panelists

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Victoria Knight
Axios

@victoriaregisk

Read Victoria's stories

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah's stories

Among the takeaways from this week’s episode:

• The FDA recently approved another promising weight loss drug, offering another option to meet the huge demand for such drugs that promise notable health benefits. But Medicare and private insurers remain wary of paying the tab for these very expensive drugs.
• Speaking of expensive drugs, the courts are weighing in on the use of so-called copay accumulators offered by drug companies and others to reduce the cost of pricey pharmaceuticals for patients. The latest ruling called the federal government’s rules on the subject inconsistent and tied the use of copay accumulators to the availability of cheaper, generic alternatives.
• Congress will revisit government spending in January, but that isn’t soon enough to address the end-of-the-year policy changes for some health programs, such as pending cuts to Medicare payments for doctors.
• “This Week in Medical Misinformation” highlights a guide by the staff of Stat to help lay people decipher whether clinical study results truly represent a “breakthrough” or not.

Also this week, Rovner interviews KFF Health News’ Rachana Pradhan, who reported and wrote the latest “Bill of the Month” feature, about a woman who visited a hospital lab for basic prenatal tests and ended up owing almost $2,400. If you have an outrageous or baffling medical bill you’d like to share with us, you can do that here.

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

Julie Rovner: KFF Health News’ “Medicaid ‘Unwinding’ Makes Other Public Assistance Harder to Get,” by Katheryn Houghton, Rachana Pradhan, and Samantha Liss.

Joanne Kenen: KFF Health News’ “She Once Advised the President on Aging Issues. Now, She’s Battling Serious Disability and Depression,” by Judith Graham.  

Victoria Knight: Business Insider’s “Washington’s Secret Weapon Is a Beloved Gen Z Energy Drink With More Caffeine Than God,” by Lauren Vespoli.

Sarah Karlin-Smith: ProPublica’s “Insurance Executives Refused to Pay for the Cancer Treatment That Could Have Saved Him. This Is How They Did It,” by Maya Miller and Robin Fields.

Also mentioned in this week’s episode:

• KFF Health News’ “Progressive and Anti-Abortion? New Group Plays Fast and Loose to Make Points,” by Darius Tahir.
• ProPublica’s “Some Republicans Were Willing to Compromise on Abortion Ban Exceptions. Activists Made Sure They Didn’t,” by Kavitha Surana.

click to open the transcript

Transcript: Trump Puts Obamacare Repeal Back on Agenda

KFF Health News’ ‘What the Health?’Episode Title: Trump Puts Obamacare Repeal Back on AgendaEpisode Number: 324Published: 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.

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At no point along his three-year path to earning a degree in physical therapy has Matthew Lee worried about getting a job.

Being able to make a living off that degree? That’s a different question — and the answer is affecting the supply of physical therapists across the nation: The cost of getting trained is out of proportion to the pay.

“There’s definitely a shortage of PTs. The jobs are there,” said Lee, a student at California State University-Sacramento who is on track to receive his degree in May. “But you may be starting out at $80,000 while carrying up to $200,000 in student debt. It’s a lot to consider.”

As many patients seeking an appointment can attest, the nationwide shortage of PTs is real. According to survey data collected by the American Physical Therapy Association, the job vacancy rate for therapists in outpatient settings last year was 17%.

Wait times are generally long across the nation, as patients tell of waiting weeks or even months for appointments while dealing with ongoing pain or post-surgical rehab. But the crunch is particularly acute in rural areas and places with a high cost of living, like California, which has a lower ratio of therapists to residents — just 57 per 100,000, compared with the national ratio of 72 per 100,000, according to the association.

The reasons are multifold. The industry hasn’t recovered from the mass defection of physical therapists who fled as practices closed during the pandemic. In 2021 alone, more than 22,000 PTs — almost a tenth of the workforce — left their jobs, according to a report by the health data analytics firm Definitive Healthcare.

And just as baby boomers age into a period of heavy use of physical therapy, and covid-delayed procedures like knee and hip replacements are finally scheduled, the economics of physical therapy are shifting. Medicare, whose members make up a significant percentage of many PT practices’ clients, has cut reimbursement rates for four years straight, and the encroachment of private equity firms — with their bottom-line orientation — means many practices aren’t staffing adequately.

According to APTA, 10 companies, including publicly held and private equity-backed firms, now control 20% of the physical therapy market. “What used to be small practices are often being bought up by larger corporate entities, and those corporate entities push productivity and become less satisfying places to work,” said James Gordon, chair of the Division of Biokinesiology and Physical Therapy at the University of Southern California.

There’s a shortage of physical therapists in all settings, including hospitals, clinics, and nursing homes, and it’s likely to continue for the foreseeable future, said Justin Moore, chief executive of the physical therapy association. “Not only do we have to catch up on those shortages, but there are great indicators of increasing demand for physical therapy,” he said.

The association is trying to reduce turnover among therapists, and is lobbying Congress to stop cutting Medicare reimbursement rates. The Centers for Medicare & Medicaid Services plans a 3.4% reduction for 2024 to a key metric that governs pay for physical therapy and other health care services. According to the association, that would bring the cuts to a total of 9% over four years.

Several universities, meanwhile, have ramped up their programs — some by offering virtual classes, a new approach for such a hands-on field — to boost the number of graduates in the coming years.

“But programs can’t just grow overnight,” said Sharon Gorman, interim chair of the physical therapy program at Oakland-based Samuel Merritt University, which focuses on training health care professionals. “Our doctoral accreditation process is very thorough. I have to prove I have the space, the equipment, the clinical sites, the faculty to show that I’m not just trying to take in more tuition dollars.”

All of this also comes at a time when the cost of obtaining a physical therapy doctorate, which typically takes three years of graduate work and is required to practice, is skyrocketing. Student debt has become a major issue, and salaries often aren’t enough to keep therapists in the field.

According to the APTA’s most recent published data, median annual wages range from $88,000 to $101,500. The association said wages either met or fell behind the rate of inflation between 2016 and 2021 in most regions.

A project underway at the University of Iowa aims to give PT students more transparency about tuition and other costs across programs. According to an association report from 2020, at least 80% of recent physical therapy graduates carried educational debt averaging roughly $142,000.

Gordon said USC, in Los Angeles’ urban core, has three PT clinics and 66 therapists on campus, several of whom graduated from the school’s program. “But even with that, it’s a challenge,” he said. “It’s not just hard to find people, but people don’t stay, and the most obvious reason is that they don’t get paid enough relative to the cost of living in this area.”

Fewer therapists plus growing demand equals long waits. When Susan Jones, a Davis, California, resident, experienced pain in her back and neck after slipping on a wet floor in early 2020, she went to her doctor and was referred for physical therapy. About two months later, she said, she finally got an appointment at an outpatient clinic.

“It was almost like the referral got lost. I was going back and forth, asking, ‘What’s going on?’” said Jones, 57. Once scheduled, her first appointment felt rushed, she said, with the therapist saying he could not identify an issue despite her ongoing pain. After one more session, Jones paid out-of-pocket to see a chiropractor. She said she’d be hesitant to try for a physical therapy referral in the future, in part because of the wait.

Universities and PT programs graduate about 12,000 therapists a year, Moore said, and representatives of several schools told KFF Health News they’re studying whether and how to expand. In 2018, USC added a hybrid model in which students learn mostly online, then travel to campus twice a semester for about a week at a time for hands-on instruction and practice.

That bumped USC’s capacity from 100 students a year to 150, and Gordon said many of the hybrid students’ professional skills are indistinguishable from those of students on campus full time.

Natalia Barajas received her PT doctorate from USC last year and was recently hired at a clinic in nearby Norwalk, with a salary of $95,000, a signing bonus, and the opportunity to earn more in incentives.

She’s also managing a lot of debt. Three years of tuition for the USC physical therapy program comes to more than $211,000, and Barajas said she owes $170,000 in student loans.

“If it were about money alone, I probably would have shifted to something else a while ago,” Barajas said. “I’m OK with my salary. I chose to do this. But it might not be the perfect situation for everybody.”

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

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

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For her and millions of other Americans, that’s the most common cause of hypothyroidism, a condition in which the thyroid, a butterfly-shaped gland in the neck, doesn’t produce enough of the hormones needed for the body to regulate metabolism.

There’s no cure for Hashimoto’s or hypothyroidism. But VanOrden, who lives in Athens, Texas, started taking levothyroxine, a much-prescribed synthetic thyroid hormone used to treat common symptoms, like fatigue, weight gain, hair loss, and sensitivity to cold.

Most patients do well on levothyroxine and their symptoms resolve. Yet for others, like VanOrden, the drug is not as effective.

For her, that meant floating from doctor to doctor, test to test, and treatment to treatment, spending about $5,000 a year.

“I look and act like a pretty energetic person,” said VanOrden, 38, explaining that her symptoms are not visible. “But there is a hole in my gas tank,” she said. And “stress makes the hole bigger.”

Autoimmune diseases occur when the immune system mistakenly attacks and damages healthy cells and tissues. Other common examples include rheumatoid arthritis, lupus, celiac disease, and inflammatory bowel disease. There are more than 80 such diseases, affecting up to an estimated 50 million Americans, disproportionately women. Overall, the cost of treating autoimmune diseases is estimated at more than $100 billion annually in the U.S.

Despite their frequency, finding help for many autoimmune diseases can prove frustrating and expensive. Getting diagnosed can be a major hurdle because the range of symptoms looks a lot like those of other medical conditions, and there are often no definitive identifying tests, said Sam Lim, clinical director of the Division of Rheumatology at Emory University School of Medicine in Atlanta. In addition, some patients feel they have to fight to be believed, even by a clinician. And after a diagnosis, many autoimmune patients rack up big bills as they explore treatment options.

“They’re often upset. Patients feel dismissed,” Elizabeth McAninch, an endocrinologist and thyroid expert at Stanford University, said of some patients who come to her for help.

Insufficient medical education and lack of investment in new research are two factors that hinder overall understanding of hypothyroidism, according to Antonio Bianco, a University of Chicago endocrinologist and leading expert on the condition.

Some patients become angry when their symptoms don’t respond to standard treatments, either levothyroxine or that drug in combination with another hormone, said Douglas Ross, an endocrinologist at Massachusetts General Hospital in Boston. “We will have to remain open to the possibility that we’re missing something here,” he said.

Jennifer Ryan, 42, said she has spent “thousands of dollars out-of-pocket” looking for answers. Doctors did not recommend thyroid hormone medication for the Huntsville, Alabama, resident — diagnosed with Hashimoto’s after years of fatigue and weight gain — because her levels appeared normal. She recently switched doctors and hopes for the best.

“You don’t walk around hurting all day long and have nothing wrong,” Ryan said.

And health insurers typically deny coverage of novel hypothyroidism treatments, said Brittany Henderson, an endocrinologist and founder of the Charleston Thyroid Center in South Carolina, which sees patients from all 50 states. “Insurance companies want you to use the generics even though many patients don’t do well with these treatments,” she said.

Meanwhile, the extent of Americans’ thyroid problems can be seen in drug sales. Levothyroxine is among the five most prescribed medications in the U.S. every year. Yet research points to some overprescribing of the drug for those with mild hypothyroidism.

A recent study, paid for by AbbVie — maker of Synthroid, a brand-name version of levothyroxine — said a medical and pharmacy claims database showed that the prevalence of hypothyroidism, including milder forms, rose from 9.5% of Americans in 2012 to 11.7% in 2019.

The number of people diagnosed will rise as the population ages, said McAninch. Endocrine disruptors — natural or synthetic chemicals that can affect hormones — could account for some of that increase, she said.

In their search for answers, patients sometimes connect on social media, where they ask questions and describe their thyroid hormone levels, drug regimens, and symptoms. Some online platforms offer information that’s dubious at best, but overall, social media outlets have increased patients’ understanding of hard-to-resolve symptoms, Bianco said.

They also offer one another encouragement.

VanOrden, who has been active on Reddit, has this advice for other patients: “Don’t give up. Continue to advocate for yourself. Somewhere out there is a doctor who will listen to you.” She has started an alternative treatment — desiccated thyroid medication, an option not approved by the FDA — plus a low dose of the addiction drug naltrexone, though the data is limited. She’s feeling better now.

Research of autoimmune thyroid disease gets little funding, so the underlying causes of immune dysfunction are not well studied, Henderson said. The medical establishment hasn’t fully recognized hard-to-treat hypothyroid patients, but increased acknowledgment of them and their symptoms would help fund research, Bianco said.

“I would like a very clear, solid acknowledgment that these patients exist,” he said. “These people are real.”

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

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Assisted living centers have become an appealing retirement option for hundreds of thousands of boomers who can no longer live independently, promising a cheerful alternative to the institutional feel of a nursing home.

But their cost is so crushingly high that most Americans can’t afford them.

What to Know About Assisted Living

The facilities can look like luxury apartments or modest group homes and can vary in pricing structures. Here’s a guide.

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These highly profitable facilities often charge $5,000 a month or more and then layer on fees at every step. Residents’ bills and price lists from a dozen facilities offer a glimpse of the charges: $12 for a blood pressure check; $50 per injection (more for insulin); $93 a month to order medications from a pharmacy not used by the facility; $315 a month for daily help with an inhaler.

The facilities charge extra to help residents get to the shower, bathroom, or dining room; to deliver meals to their rooms; to have staff check-ins for daily “reassurance” or simply to remind residents when it’s time to eat or take their medication. Some even charge for routine billing of a resident’s insurance for care.

“They say, ‘Your mother forgot one time to take her medications, and so now you’ve got to add this on, and we’re billing you for it,’” said Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care, a nonprofit.

About 850,000 older Americans reside in assisted living facilities, which have become one of the most lucrative branches of the long-term care industry that caters to people 65 and older. Investors, regional companies, and international real estate trusts have jumped in: Half of operators in the business of assisted living earn returns of 20% or more than it costs to run the sites, an industry survey shows. That is far higher than the money made in most other health sectors.

Rents are often rivaled or exceeded by charges for services, which are either packaged in a bundle or levied à la carte. Overall prices have been rising faster than inflation, and rent increases since the start of last year have been higher than at any previous time since at least 2007, according to the National Investment Center for Seniors Housing & Care, which provides data and other information to companies.

There are now 31,000 assisted living facilities nationwide — twice the number of skilled nursing homes. Four of every five facilities are run as for-profits. Members of racial or ethnic minority groups account for only a tenth of residents, even though they make up a quarter of the population of people 65 or older in the United States.

A public opinion survey conducted by KFF found that 83% of adults said it would be impossible or very difficult to pay $60,000 a year for an assisted living facility. Almost half of those surveyed who either lived in a long-term care residence or had a loved one who did encountered unexpected add-on fees for things they assumed were included in the price.

Assisted living is part of a broader affordability crisis in long-term care for the swelling population of older Americans. Over the past decade, the market for long-term care insurance has virtually collapsed, covering just a tiny portion of older people. Home health workers who can help people stay safely in their homes are generally poorly paid and hard to find.

And even older people who can afford an assisted living facility often find their life savings rapidly drained.

Unlike most residents of nursing homes, where care is generally paid for by Medicaid, the federal-state program for the poor and disabled, assisted living residents or their families usually must shoulder the full costs. Most centers require those who can no longer pay to move out.

The industry says its pricing structures pay for increased staffing that helps the more infirm residents and avoids saddling others with costs of services they don’t need.

Prices escalate greatly when a resident develops dementia or other serious illnesses. At one facility in California, the monthly cost of care packages for people with dementia or other cognitive issues increased from $1,325 for those needing the least amount of help to $4,625 as residents’ needs grew.

“It’s profiteering at its worst,” said Mark Bonitz, who explored multiple places in Minnesota for his mother, Elizabeth. “They have a fixed amount of rooms,” he said. “The way you make the most money is you get so many add-ons.” Last year, he moved his mother to a nonprofit center, where she lived until her death in July at age 96.

LaShuan Bethea, executive director of the National Center for Assisted Living, a trade association of owners and operators, said the industry would require financial support from the government and private lenders to bring prices down.

“Assisted living providers are ready and willing to provide more affordable options, especially for a growing elderly population,” Bethea said. “But we need the support of policymakers and other industries.” She said offering affordable assisted living “requires an entirely different business model.”

Others defend the extras as a way to appeal to the waves of boomers who are retiring. “People want choice,” said Beth Burnham Mace, a special adviser for the National Investment Center for Seniors Housing & Care. “If you price it more à la carte, you’re paying for what you actually desire and need.”

Yet residents don’t always get the heightened attention they paid for. Class-action lawsuits have accused several assisted living chains of failing to raise staffing levels to accommodate residents’ needs or of failing to fulfill billed services.

“We still receive many complaints about staffing shortages and services not being provided as promised,” said Aisha Elmquist, until recently the deputy ombudsman for long-term care in Minnesota, a state-funded advocate. “Some residents have reported to us they called 911 for things like getting in and out of bed.”

‘Can You Find Me a Money Tree?’

Florence Reiners, 94, adores living at the Waters of Excelsior, an upscale assisted living facility in the Minneapolis suburb of Excelsior. The 115-unit building has a theater, a library, a hair salon, and a spacious dining room.

“The windows, the brightness, and the people overall are very cheerful and very friendly,” Reiners, a retired nursing assistant, said. Most important, she was just a floor away from her husband, Donald, 95, a retired water department worker who served in the military after World War II and has severe dementia.

She resisted her children’s pleas to move him to a less expensive facility available to veterans.

Reiners is healthy enough to be on a floor for people who can live independently, so her rent is $3,330 plus $275 for a pendant alarm. When she needs help, she’s billed an exact amount, like a $26.67 charge for the 31 minutes an aide spent helping her to the bathroom one night.

Her husband’s specialty care at the facility cost much more: $6,150 a month on top of $3,825 in rent.

Month by month, their savings, mainly from the sale of their home, and monthly retirement income of $6,600 from Social Security and his municipal pension, dwindled. In three years, their assets and savings dropped to about $300,000 from around $550,000.

Her children warned her that she would run out of money if her health worsened. “She about cried because she doesn’t want to leave her community,” Anne Palm, one of her daughters, said.

In June, they moved Donald Reiners to the VA home across the city. His care there costs $3,900 a month, 60% less than at the Waters. But his wife is not allowed to live at the veterans’ facility.

After nearly 60 years together, she was devastated. When an admissions worker asked her if she had any questions, she answered, “Can you find me a money tree so I don’t have to move him?”

Heidi Elliott, vice president for operations at the Waters, said employees carefully review potential residents’ financial assets with them, and explain how costs can increase over time.

“Oftentimes, our senior living consultants will ask, ‘After you’ve reviewed this, Mr. Smith, how many years do you think Mom is going to be able to, to afford this?’” she said. “And sometimes we lose prospects because they’ve realized, ‘You know what? Nope, we don’t have it.’”

Potential Buyers From the Bahamas

For residents, the median annual price of assisted living has increased 31% faster than inflation, nearly doubling from 2004 to 2021, to $54,000, according to surveys by the insurance firm Genworth. Monthly fees at memory care centers, which specialize in people with dementia and other cognitive issues, can exceed $10,000 in areas where real estate is expensive or the residents’ needs are high.

Diane Lepsig, president of CarePatrol of Bellevue-Eastside, in the Seattle suburbs, which helps place people, said that she has warned those seeking advice that they should expect to pay at least $7,000 a month. “A million dollars in assets really doesn’t last that long,” she said.

Prices rose even faster during the pandemic as wages and supply costs grew. Brookdale Senior Living, one of the nation’s largest assisted living owners and operators, reported to stockholders rate increases that were higher than usual for this year. In its assisted living and memory care division, Brookdale’s revenue per occupied unit rose 9.4% in 2023 from 2022, primarily because of rent increases, financial disclosures show.

In a statement, Brookdale said it worked with prospective residents and their families to explain the pricing and care options available: “These discussions begin in the initial stages of moving in but also continue throughout the span that one lives at a community, especially as their needs change.”

Many assisted living facilities are owned by real estate investment trusts. Their shareholders expect the high returns that are typically gained from housing investments rather than the more marginal profits of the heavily regulated health care sector. Even during the pandemic, earnings remained robust, financial filings show.

Ventas, a publicly traded real estate investment trust, reported earning revenues in the third quarter of this year that were 24% above operating costs from its investments in 576 senior housing properties, which include those run by Atria Senior Living and Sunrise Senior Living.

Ventas said the prices for its services were affordable. “In markets where we operate, on average it costs residents a comparable amount to live in our communities as it does to stay in their own homes and replicate services,” said Molly McEvily, a spokesperson.

In the same period, Welltower, another large real estate investment trust, reported a 24% operating margin from its 883 senior housing properties, which include ones operated by Sunrise‌, Atria, Oakmont Management Group, and Belmont Village.‌ Welltower did not respond‌‌ to requests for comment.

The median operating margin for assisted living facilities in 2021 was 23% if they offered memory care and 20% if they didn’t, according to David Schless, chief executive of the American Seniors Housing Association, a trade group that surveys the industry each year.

Bethea said those returns could be invested back into facilities’ services, technology, and building updates. “This is partly why assisted living also enjoys high customer satisfaction rates,” she said.

Brandon Barnes, an administrator at a family business that owns three small residences in Esko, Minnesota, said he and other small operators had been approached by brokers for companies, including one based in the Bahamas. “I don’t even know how you’d run them from that far away,” he said.

Rating the Cost of a Shower, on a Point Scale

To consistently get such impressive returns, some assisted living facilities have devised sophisticated pricing methods. Each service is assigned points based on an estimate of how much it costs in extra labor, to the minute. When residents arrive, they are evaluated to see what services they need, and the facility adds up the points. The number of points determines which tier of services you require; facilities often have four or five levels of care, each with its own price.

Charles Barker, an 81-year-old retired psychiatrist with Alzheimer’s, moved into Oakmont of Pacific Beach, a memory care facility in San Diego, in November 2020. In the initial estimate, he was assigned 135 points: 5 for mealtime reminders; 12 for shaving and grooming reminders; 18 for help with clothes selection twice a day; 36 to manage medications; and 30 for the attention, prompting, and redirection he would need because of his dementia, according to a copy of his assessment provided by his daughter, Celenie Singley.

Barker’s points fell into the second-lowest of five service levels, with a charge of $2,340 on top of his $7,895 monthly rent.

Singley became distraught over safety issues that she said did not seem as important to Oakmont as its point system. She complained in a May 2021 letter to Courtney Siegel, the company’s chief executive, that she repeatedly found the doors to the facility, located on a busy street, unlocked — a lapse at memory care centers, where secured exits keep people with dementia from wandering away. “Even when it’s expensive, you really don’t know what you’re getting,” she said in an interview.

Singley, 50, moved her father to another memory care unit. Oakmont did not respond to requests for comment.

Other residents and their families brought a class-action lawsuit against Oakmont in 2017 that said the company, an assisted living and memory care provider based in Irvine, California, had not provided enough staffing to meet the needs of residents it identified through its own assessments.

Jane Burton-Whitaker, a plaintiff who moved into Oakmont of Mariner Point in Alameda, California, in 2016, paid $5,795 monthly rent and $270 a month for assistance with her urinary catheter, but sometimes the staff would empty the bag just once a day when it required multiple changes, the lawsuit said.

She paid an additional $153 a month for checks of her “fragile” skin “up to three times a day, but most days staff did not provide any skin checks,” according to the lawsuit. (Skin breakdown is a hazard for older people that can lead to bedsores and infections.) Sometimes it took the staff 45 minutes to respond to her call button, so she left the facility in 2017 out of concern she would not get attention should she have a medical emergency, the lawsuit said.

Oakmont paid $9 million in 2020 to settle the class-action suit and agreed to provide enough staffing, without admitting fault.

Similar cases have been brought against other assisted living companies. In 2021, Aegis Living, a company based in Bellevue, Washington, agreed to a $16 million settlement in a case claiming that its point system — which charged 64 cents per point per day — was “based solely on budget considerations and desired profit margins.” Aegis did not admit fault in the settlement or respond to requests for comment.

When the Money Is Gone

Jon Guckenberg’s rent for a single room in an assisted living cottage in rural Minnesota was $4,140 a month before adding in a raft of other charges.

The facility, New Perspective Cloquet, charged him $500 to reserve a spot and a $2,000 “entrance fee” before he set foot inside two years ago. Each month, he also paid $1,080 for a care plan that helped him cope with bipolar disorder and kidney problems, $750 for meals, and another $750 to make sure he took his daily medications. Cable service in his room was an extra $50 a month.

A year after moving in, Guckenberg, 83, a retired pizza parlor owner, had run through his life’s savings and was put on a state health plan for the poor.

Doug Anderson, a senior vice president at New Perspective, said in a statement that “the cost and complexity of providing care and housing to seniors has increased exponentially due to the pandemic and record-high inflation.”

In one way, Guckenberg has been luckier than most people who run out of money to pay for their care. His residential center accepts Medicaid to cover the health services he receives.

Most states have similar programs, though a resident must be frail enough to qualify for a nursing home before Medicaid will cover the health care costs in an assisted living facility. But enrollment is restricted. In 37 states, people are on waiting lists for months or years.

“We recognize the current system of having residents spend down their assets and then qualify for Medicaid in order to stay in their assisted living home is broken,” said Bethea, with the trade association. “Residents shouldn’t have to impoverish themselves in order to continue receiving assisted living care.”

Only 18% of residential care facilities agree to take Medicaid payments, which tend to be lower than what they charge self-paying clients, according to a federal survey of facilities. And even places that accept Medicaid often limit coverage to a minority of their beds.

For those with some retirement income, Medicaid isn’t free. Nancy Pilger, Guckenberg’s guardian, said that he was able to keep only about $200 of his $2,831 monthly retirement income, with the rest going to paying rent and a portion of his costs covered by the government.

In September, Guckenberg moved to a nearby assisted living building run by a nonprofit. Pilger said the price was the same. But for other residents who have not yet exhausted their assets, Guckenberg’s new home charges $12 a tray for meal delivery to the room; $50 a month to bill a person’s long-term care insurance plan; and $55 for a set of bed rails.

Even after Guckenberg had left New Perspective, however, the company had one more charge for him: a $200 late payment fee for money it said he still owed.

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

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Money talks.

The United States faces a serious shortage of primary care physicians for many reasons, but one, in particular, is inescapable: compensation.

Substantial disparities between what primary care physicians earn relative to specialists like orthopedists and cardiologists can weigh into medical students’ decisions about which field to choose. Plus, the system that Medicare and other health plans use to pay doctors generally places more value on doing procedures like replacing a knee or inserting a stent than on delivering the whole-person, long-term health care management that primary care physicians provide.

As a result of those pay disparities, and the punishing workload typically faced by primary care physicians, more new doctors are becoming specialists, often leaving patients with fewer choices for primary care.

“There is a public out there that is dissatisfied with the lack of access to a routine source of care,” said Christopher Koller, president of the Milbank Memorial Fund, a foundation that focuses on improving population health and health equity. “That’s not going to be addressed until we pay for it.”

Primary care is the foundation of our health care system, the only area in which providing more services — such as childhood vaccines and regular blood pressure screenings — is linked to better population health and more equitable outcomes, according to the National Academies of Sciences, Engineering, and Medicine, in a recently published report on how to rebuild primary care. Without it, the national academies wrote, “minor health problems can spiral into chronic disease,” with poor disease management, emergency room overuse, and unsustainable costs. Yet for decades, the United States has underinvested in primary care. It accounted for less than 5% of health care spending in 2020 — significantly less than the average spending by countries that are members of the Organization for Economic Cooperation and Development, according to the report.

A $26 billion piece of bipartisan legislation proposed last month by Sen. Bernie Sanders (I-Vt.), chair of the Senate Health, Education, Labor, and Pensions Committee, and Sen. Roger Marshall (R-Kan.) would bolster primary care by increasing training opportunities for doctors and nurses and expanding access to community health centers. Policy experts say the bill would provide important support, but it’s not enough. It doesn’t touch compensation.

“We need primary care to be paid differently and to be paid more, and that starts with Medicare,” Koller said.

How Medicare Drives Payment

Medicare, which covers 65 million people who are 65 and older or who have certain long-term disabilities, finances more than a fifth of all health care spending — giving it significant muscle in the health care market. Private health plans typically base their payment amounts on the Medicare system, so what Medicare pays is crucial.

Under the Medicare payment system, the amount the program pays for a medical service is determined by three geographically weighted components: a physician’s work, including time and intensity; the practice’s expense, such as overhead and equipment; and professional insurance. It tends to reward specialties that emphasize procedures, such as repairing a hernia or removing a tumor, more than primary care, where the focus is on talking with patients, answering questions, and educating them about managing their chronic conditions.

Medical students may not be familiar with the particulars of how the payment system works, but their clinical training exposes them to a punishing workload and burnout that is contributing to the shortage of primary care physicians, projected to reach up to 48,000 by 2034, according to estimates from the Association of American Medical Colleges.

The earnings differential between primary care and other specialists is also not lost on them. Average annual compensation for doctors who focus on primary care — family medicine, internists, and pediatricians — ranges from an average of about $250,000 to $275,000, according to Medscape’s annual physician compensation report. Many specialists make more than twice as much: Plastic surgeons top the compensation list at $619,000 annually, followed by orthopedists ($573,000) and cardiologists ($507,000).

“I think the major issues in terms of the primary care physician pipeline are the compensation and the work of primary care,” said Russ Phillips, an internist and the director of the Harvard Medical School Center for Primary Care. “You have to really want to be a primary care physician when that student will make one-third of what students going into dermatology will make,” he said.

According to statistics from the National Resident Matching Program, which tracks the number of residency slots available for graduating medical students and the number of slots filled, 89% of 5,088 family medicine residency slots were filled in 2023, compared with a 93% residency fill rate overall. Internists had a higher fill rate, 96%, but a significant proportion of internal medicine residents eventually practice in a specialty area rather than in primary care.

No one would claim that doctors are poorly paid, but with the average medical student graduating with just over $200,000 in medical school debt, making a good salary matters.

Not in It for the Money

Still, it’s a misperception that student debt always drives the decision whether to go into primary care, said Len Marquez, senior director of government relations and legislative advocacy at the Association of American Medical Colleges.

For Anitza Quintero, 24, a second-year medical student at the Geisinger Commonwealth School of Medicine in rural Pennsylvania, primary care is a logical extension of her interest in helping children and immigrants. Quintero’s family came to the United States on a raft from Cuba before she was born. She plans to focus on internal medicine and pediatrics.

“I want to keep going to help my family and other families,” she said. “There’s obviously something attractive about having a specialty and a high pay grade,” Quintero said. Still, she wants to work “where the whole body is involved,” she said, adding that long-term doctor-patient relationships are “also attractive.”

Quintero is part of the Abigail Geisinger Scholars Program, which aims to recruit primary care physicians and psychiatrists to the rural health system in part with a promise of medical school loan forgiveness. Health care shortages tend to be more acute in rural areas.

These students’ education costs are covered, and they receive a $2,000 monthly stipend. They can do their residency elsewhere, but upon completing it they return to Geisinger for a primary care job with the health care system. Every year of work there erases one year of the debt covered by their award. If they don’t take a job with the health care system, they must repay the amount they received.

Payment Imbalances a Source of Tension

In recent years, the Centers for Medicare & Medicaid Services, which administers the Medicare program, has made changes to address some of the payment imbalances between primary care and specialist services. The agency has expanded the office visit services for which providers can bill to manage their patients, including adding non-procedural billing codes for providing transitional care, chronic care management, and advance care planning.

In next year’s final physician fee schedule, the agency plans to allow another new code to take effect, G2211. It would let physicians bill for complex patient evaluation and management services. Any physician could use the code, but it is expected that primary care physicians would use it more frequently than specialists. Congress has delayed implementation of the code since 2021.

The new code is a tiny piece of overall payment reform, “but it is critically important, and it is our top priority on the Hill right now,” said Shari Erickson, chief advocacy officer for the American College of Physicians.

It also triggered a tussle that highlights ongoing tension in Medicare physician payment rules.

The American College of Surgeons and 18 other specialty groups published a statement describing the new code as “unnecessary.” They oppose its implementation because it would primarily benefit primary care providers who, they say, already have the flexibility to bill more for more complex visits.

But the real issue is that, under federal law, changes to Medicare physician payments must preserve budget neutrality, a zero-sum arrangement in which payment increases for primary care providers mean payment decreases elsewhere.

“If they want to keep it, they need to pay for it,” said Christian Shalgian, director of the division of advocacy and health policy for the American College of Surgeons, noting that his organization will continue to oppose implementation otherwise.

Still, there’s general agreement that strengthening the primary care system through payment reform won’t be accomplished by tinkering with billing codes.

The current fee-for-service system doesn’t fully accommodate the time and effort primary care physicians put into “small-ticket” activities like emails and phone calls, reviews of lab results, and consultation reports. A better arrangement, they say, would be to pay primary care physicians a set monthly amount per patient to provide all their care, a system called capitation.

“We’re much better off paying on a per capita basis, get that monthly payment paid in advance plus some extra amount for other things,” said Paul Ginsburg, a senior fellow at the University of Southern California Schaeffer Center for Health Policy and Economics and former commissioner of the Medicare Payment Advisory Commission.

But if adding a single five-character code to Medicare’s payment rules has proved challenging, imagine the heavy lift involved in overhauling the program’s entire physician payment system. MedPAC and the national academies, both of which provide advice to Congress, have weighed in on the broad outlines of what such a transformation might look like. And there are targeted efforts in Congress: for instance, a bill that would add an annual inflation update to Medicare physician payments and a proposal to address budget neutrality. But it’s unclear whether lawmakers have strong interest in taking action.

“The fact that Medicare has been squeezing physician payment rates for two decades is making reforming their structure more difficult,” said Ginsburg. “The losers are more sensitive to reductions in the rates for the procedures they do.”

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

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Hannah Fegley of Silver Spring, Md., says she spent seven hours on the phone last month — the eighth month of her pregnancy — with insurers, pharmacy benefit managers and half a dozen pharmacies trying to obtain Pfizer’s new RSV shot, called Abrysvo.

The Health 202 is a coproduction of The Washington Post and KFF Health News.

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Respiratory syncytial virus puts up to 2 percent of babies in the hospital each year because their tiny airways don’t tolerate the inflammation. While most recover with supportive care, as many as 300 kids under 5 years old die each year and the majority of them are under 1. A bad case of RSV in infancy can mean a lifetime of asthma.  

Fegley says two of her friends saw their babies land in intensive care last year, a bad one for RSV. So she was eager to get the shot; she has a 4-year-old in preschool who, she says, “brings home every virus.” 

One of KFF Health News’ signature projects is the Bill of the Month, where readers and listeners send us stories about how the U.S. health system is failing them. Often, the problems they encounter connect directly to holes in government policy. Fegley’s story shows how regulators’ recommendations trickle down into a fragmented health system — leaving patients in the lurch.   

The Pfizer vaccine (list price: about $300), confers immunity to the fetus through the mother. As an alternative, the Advisory Committee on Immunization Practices also recommended AstraZeneca’s Beyfortus (about $500), a monoclonal antibody against the virus to administer to babies after birth. Fegley’s obstetrician didn’t carry the vaccine. So she gave Fegley a prescription to get it at a pharmacy, predicting (correctly) that many pediatricians wouldn’t stock Beyfortus.

Pharmacies typically stock RSV vaccines because the CDC also recommends them for people over 60 — a large and lucrative market, even though scientists and public health authorities agree the more obvious use is in infants. There are two different RSV vaccines approved for older Americans: the Pfizer shot, which is also approved for pregnant women, and a GlaxoSmithKline shot that is not. 

Fegley’s insurer uses CVS-Caremark as its pharmacy benefits manager, which of course uses CVS Pharmacy. (Both are part of CVS Health Corp.) And CVS, she discovered, only stocks the GSK vaccine. 

(Is your head spinning yet? Hers was. And she is health-care literate —  a social worker whose husband is a doctor. “We’re told we have choice, but we really do not,” she said.) 

After a phone complaint, a Caremark representative granted Fegley an “override” allowing her to try other pharmacies. She called them, but many said they’d only give the Pfizer shot to people 60 and over.

“We’re currently completing the final steps needed to offer the maternal RSV vaccine and hope to make it available at our pharmacies soon,” said Matt Blanchette, a CVS Health spokesman representing Caremark and the pharmacy. “Patients should check with their insurer to confirm if the vaccine is covered by their individual plan.”

One smaller pharmacy said by phone it had a dose for Fegley, but when they checked her insurance at the counter, it was denied. She filled out forms to get a shot at both Costco and Walgreens. Denied. 

She didn’t want to pay $300 or more for the shot out-of-pocket because she knew that under Obamacare, most insurers must cover all ACIP-recommended vaccines free of charge. So how can it be so hard to obtain a shot that the FDA and CDC say can save babies’ lives? Let us count the ways.

• One: The Affordable Care Act gives insurers more than a year after a new vaccine wins ACIP’s stamp of approval to start covering it. 
• Two: To keep costs down, pharmacies try to get deals on similar products by contracting with just one drugmaker. GSK didn’t finish its application to the FDA for approval to give its shot to pregnant women.
• Three: Many pharmacies don’t like giving pregnant women shots, fearing liability.
• Four: Both obstetricians (for the Pfizer shot) and pediatricians (the monoclonal antibody) have a hard time stocking such expensive medicines  — particularly with insurance reimbursement uncertain.

“Cost is the big issue,” said Steven Abelowitz of Coastal Kids, a big California group practice. “For us, it was a tough, risky decision: We’ve spent millions to order batches and we don’t know if we’ll get reimbursed,” he said. “Smaller practices just don’t have the money.”

There’s a happy-ish ending: This month, a Caremark representative left Fegley a voice mail saying she had an override to get the Pfizer vaccine at Costco for $105 out of pocket. If she wanted it free, the rep added, she should contact her husband’s employer. 

With some resentment, she says, she paid for the shot.

This article is not available for syndication due to republishing restrictions. If you have questions about the availability of this or other content for republication, please contact NewsWeb@kff.org.

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

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In 2019, emergency medicine physician and historian Luke Messac was working as a medical resident. He had heard about hospitals suing their own patients over unpaid medical bills, so he decided to investigate whether the hospitals where he worked were doing the same.

It turns out they were.

“The care I was delivering to patients was resulting in them showing up in court, or having their wages garnished, or signing up for a payment plan that they would be paying for the better part of a decade,” said Messac.

In this episode of “An Arm and a Leg,” host Dan Weissmann speaks with Messac about his book, “Your Money or Your Life: Debt Collection in American Medicine,” and how people working in health care can try to reform these practices.

Dan Weissmann

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Host and producer of "An Arm and a Leg." Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting.

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Transcript: ‘Your Money or Your Life’: This Doctor Wrote the Book on Medical Debt

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. A couple years ago, I got in touch with a guy who’d been posting about this show on Twitter.

Luke Messac: Hi, yeah, my name is Luke Messac.

Dan: Luke is a doctor. He’s an instructor of emergency medicine at Harvard. And he’s a Ph.D. historian.

He told me he was writing a history of something we cover a lot on this show. Medical debt.

Luke Messac: It’s a problem I couldn’t avoid and therefore couldn’t avoid writing about.

Dan: And now that book is out. It’s called Your Money or Your Life. It tells the story of how the collection of medical debt in the US became so aggressive, the real impact it has on patients and – especially important for us – a different way to do things.

This is An Arm and a Leg, a show about why healthcare 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, our job on this show, it’s to take one of the most enraging, terrifying, depressing parts of American life and bring you something entertaining, empowering, and useful.

Dan: Luke Messac says his journey begins with this guy.

Paul Farmer: It’s not intellectually shallow to have hope. That’s a profound thing, you know…

Dan: That’s Paul Farmer – and YES, you may have heard me mention him recently, like when we talked about the writer John Green. Paul Farmer was a doctor who founded an amazing global health organization called Partners in Health.

He’s the subject of a book called Mountains Beyond Mountains, which focuses a lot on his work in Haiti, and which, I’m gonna say again here: When we start a book club on this show, that’s my vote for our first read.

Anyway, Luke started watching Paul Farmer’s videos as a kid. And ended up as

his student.

Luke Messac: I knew I wanted to be in medicine. I knew I wanted to be a doctor. When I first got into Harvard as a 17 year old kid, I, I think YouTube was just starting at that point. I’m going to date myself. And I saw some of his lectures and this was right around the time when Mountains Beyond Mountains came out. And I started to learn more about his work. My father was born in Haiti and I’ve always had a special affinity for the country. And, and so I, I heard about him. I really lucked out. In that one year, he was teaching a freshman seminar, uh, for 12 kids and I, ended up taking this class with him as freshmen and then kind of clung for dear life to, to work with the organization, uh, after that, because we were hooked.

Dan: Yeah, I mean, what an incredible opportunity. And, you know, I’ve only, I only know him right through his kind of public persona and mostly through reading that book, which is now like 20 years old, I think, um but you know, he seems like such an incredibly inspiring person who doesn’t accept half measures.

Luke Messac: Yeah, he, he insisted on a few things, and one of them was that the poor patient shouldn’t get care any less, uh, decent than the care that anyone else would expect, that the care that we deliver at Brigham and Women’s Hospital, where he also worked, should be the standard of care that should be delivered everywhere, including rural Haiti, including rural Rwanda. And he would call that an aspirational goal sometimes, but it’s one that he was extremely serious about and devoted. This guy did not stop working. Uh, you couldn’t keep up with him, but he also made space for students, especially younger students, people who weren’t even in their medical training yet. He made so much time for me. So much time for us. He’d always respond to our emails and text messages.

Dan: So did you, like, apply to MD PhD programs, like, at the same time, like you’re, like, finishing undergrad and you’re like, okay, uh, all right, here’s the, here’s the plan for the next 15 years. Or did, things evolve? Like, how did that work?

Luke Messac: Yeah, essentially. I mean, I’m somewhat loathe to give up a little secret, which is that the MD PhD programs in the United States are paid for by the federal government. At least that still remains the case. And so if you want to get a medical degree in the United States, most of the time you’re going to come out unless you’re independently wealthy with six figures in debt. And I’m not talking low six figures. If you want to get an MD-PhD in the United States, that is still funded by the federal government. So you’re going to graduate with 0 in debt from medical school or graduate school, and you’ll get a stipend on top of that. So it is a long road, but it is one that comes with some benefits and doesn’t leave you tremendously in the hole when you come out feeling like you can’t do anything but try to pay back that debt.

Dan: That is really, really wild. It’s really interesting that it’s, I mean, There’s something very poetic about you entering this program that allows you to, uh, emerge from it without debt, and then using that resource to build an understanding of and campaign against debt.

So, it’s fall 2019 and this is your story. This is how you arrived here. You are yourself basically debt free, and you’ve been following a path. And you note that you had been reading about, medical debt lawsuits.

Luke Messac: Yeah, I’d seen it in ProPublica, Kaiser Family Foundation, um, and in various newspapers across the country. And I had friends in training at Johns Hopkins hospitals, in Baltimore, and I saw them post pictures of their protests against their own hospitals, practice of suing patients, oftentimes their own low paid employees for medical debts they couldn’t afford to pay. Their work was really an inspiration to me to find out if this kind of thing was going on elsewhere. I thought it didn’t. I thought it was very anomalous practice. I didn’t think I’d find too much, uh, in the way of it happening in my neck of the woods, but I was, I was wrong about that.

Dan: So in the book, you tell the story that you went to the courthouse in Providence, Rhode Island, where you were working as a medical resident to look up medical debt lawsuits, And you’re still imagining this as like, well, this is some kind of outlier thing. I’m not going to find it. But you’re like, you’re just a little curious?

Luke Messac: Being a historian is a very solitary and quiet existence. And that is something that you cannot say of the emergency department, neither solitary nor quiet ever. And so I was I had a day off. I wanted to relive my days in the archive. And I wanted to answer this question, and I went to the courthouse. And I asked to be led into the court records. And so basically they let you into this back room, uh, looks like, uh, an office from office space, like the movie, uh, a lot of UV light and white walls. And a very old computer that looks like it came out of the late 1990s, early 2000s, and you pull up the database, also a very clunky looking old database, and you can type in your hospital or type in your business or type in an individual and see if they’ve ever been involved in the court system. And so I did that, I looked up, uh, my hospital system, other hospital systems in the state, and some of the lawsuits were what you’d expect.

Dan: Like medical malpractice suits. And run of the mill employment disputes. But he also saw lawsuits against the hospital’s patients. A lot of lawsuits.

Luke: And when they were filed, oftentimes they would get a response from the defendant, and these responses would show me that some of the defendants were single mothers. Some of the defendants were living on social security disability. Some of the defendants were recent immigrants who had trouble responding in English and so wrote back in their native languages, pleading for leniency. And when they asked for such, they would get some in the form of usually a payment plan. Maybe they would be asked to pay some amount every month for the next five years, six years, seven years to cover the cost of a single visit. And if they signed up for those payment plans, then they would be told that if they missed any payments, that they would be charged double digit interest rates. And if they didn’t respond, as many didn’t, then they would lose the case by default. And oftentimes have their wages garnished, have 25% of their wages taken from them every month. And so these were really punitive measures being taken against really vulnerable patients. The vast majority of lawsuits in the state were filed by the hospitals in which I worked,. And this was really disturbing to me. I always comforted my patients who worried about the cost of their care when they came in and said, oh boy, am I going to be able to afford this? Um, you know, should I have come in at all? And I always tried to comfort them and say, oh, don’t worry about it. Even if you’re uninsured, we have financial assistance. You’ll, you know, we don’t, we don’t go after people. And I was wrong. I was dead wrong about that. And that made me feel, uh, pretty awful.

Dan: In the book, you say you felt shame.

Luke Messac: Yeah, it was a mixture of anger and surprise and shame, because I always knew that our healthcare system was full of injustice, that so many people can’t afford insurance, even those who do, aren’t always able to afford their care, that the distribution of resources runs along steep gradients of inequality. But I didn’t realize that I was such a direct participant in that injustice, that the care I was delivering to patients was resulting in them showing up in court or having their wages garnished or signing up for a payment plan that they would be paying for the better part of a decade. So that was really the source of my shame.

Dan: And what did you do? Like, I know eventually you took lots of actions, but like, what did you do immediately?

Luke Messac: Yeah, I talked to my friends. I talked to some mentors. I talked to my wife, who is also in medicine, but was working elsewhere. And all of us shared the same sense of shock and anger and shame, because none of us wanted to be doing that to our patients. We all kind of shared the same sense of shock but. I didn’t know what to do at first. I didn’t know where to turn.

Dan: At first you tried Twitter, right? Or Facebook or…

Luke Messac: uh, yeah, I did. I just started using Twitter the year before I put out a couple of, you know, impotently angry tweets about it and said, someone’s got to do something about this. This shouldn’t exist. And, uh, didn’t get much of a response. You know, a few friends of mine said, right on. But, you know, it, it wasn’t, it wasn’t making much of a dent.

Dan: So he wrote an op ed. Submitted everywhere he could think of – New York Times, Wall Street Journal, Washington Post, even his hometown paper, the Providence Journal.

Luke Messac: No one was interested. No bites. And then there was a small, uh, lefty blog run by this guy, Steve Alquist, a real muckraking crusader here in Providence. And I sent it to him and he said, this is really interesting. Absolutely., I’ll run it. I didn’t know if it would make any difference whether this blog post on Uprise Rhode Island, uh, uh, you know, would, would cause any waves, but sure enough, the morning it went up, I got a call from my superiors of the hospital saying they definitely wanted to meet. So it had, it had something of its desired effect. Although, uh, I won’t recommend the approach to everybody because it, it, it did imperil my job.

Dan: Because that first meeting was not set up as a friendly chat. The message also said he could face public correction or worse, dot dot dot.

Luke Messac: So I wondered what that or worse could be.

Dan: You met with a top administrator who was like, you’re just wrong buddy, we don’t do that, that never happens, I would know.

Luke Messac: Yeah, they did tell me that they didn’t sue patients, that I was wrong. And to be honest, it raised a couple other questions in my mind, saying… Is this guy just lying to me or does he literally not know? And so when I was able to prove to the folks who I was meeting with that were indeed suing patients, in fact, some of these lawsuits were filed in the last few weeks, they quickly changed course, they severed their relationship with the debt collector who was filing the lawsuits on their behalf and dismissed the remainder of the cases. So that was a, that was a sanguine outcome from that one thing, but it did make me realize a few things. One was that, you know, I’d really only started to understand what on earth was going on and how so many patients were being sued and how it was being done in a way that, uh, most of us who were involved in delivering care and even a lot of the people who were involved in running the hospital didn’t seem to know that this was happening.

Dan: So Luke Messac, the doctor, now knew that hospitals, including his, were suing patients to collect debt. Luke Messac, the historian, wanted to figure out when this practice started and why. That’s after this…

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health care in America. Their work is terrific. Wins all kinds of awards every year. So proud to work with them.

Luke writes: “Medical debts have long spurred people to desperate acts: theft, suicide, plane hijacking,” And yes, the story of the hijacking is in the book. But, he also writes quote: “the modern era of pay-up-or-else health financing and aggressive debt collection began in earnest during the last two decades of the twentieth century, as threats to their own survival made hospitals less financially forgiving toward their patients.” Unquote. He writes about the eighties, how changes to Medicare and Medicaid left hospitals strapped for cash. And how they tried to make up the difference by charging higher prices to private insurers– which meant higher prices for the

uninsured too. And how in the nineties, private insurers started pushing back hard on how much they’d pay, and what they’d pay for. And that hit hospitals in the pocketbook hard.

Luke Messac: And really the question is when those cost pressures start, who’s going to make up the difference? And for a lot of places, it was patients. It was patients paying in the form of higher deductibles, higher copays, or for the uninsured, more aggressive debt collection measures. And so a lot of hospitals would leave debts on the books for years, even decades, until this time when they started saying, we’re done waiting for our money. Literally, we’re done waiting for our money was the line. And so they turned to third party debt collectors to whom they would either assign debts or sell debts, and those debt collectors really introduced a whole new series of tactics that involved the court system that involved, uh, wage garnishment and reporting debt to credit bureaus and placing liens on property and foreclosing on homes and sometimes even seeking the arrest of patients who didn’t show up to hearings. So this was a really brave new world of medical debt collection that we continue to live with today.

Dan: So here’s what I don’t really get, um, this comes up whenever you see stories about hospitals sue patients over debts. It’s like how little money this actually generates for hospitals. And this is evident from like your very, your accounts of the very first sales of debts that hospitals are selling you know, these very large collections of debts for tiny, tiny amounts and like, so, what’s the point?

Luke Messac: That is the persisting mystery of all of this. I think I have a few reasons why this might’ve happened. One is that it is a revenue garnering tactic, even as small as it is, it puts you a little more in the black or a little less in the red. And if you are a hospital financial administrator who’s charged with making sure that you remain as much in the black as possible or less in the red, then you’re going to take every tool in your toolkit until someone tells you not to. And without doctors and nurses and healthcare professionals really being involved in the process or aware that the process is going on, there’s really nothing to stop them. And the only people who you’re hearing from are debt collectors themselves. They are selling their wares at your door. They are at all your conferences. They are promising you that they will help your situation so

why not? I mean, your billing and collections office doesn’t want to deal with these bills. Folks who work in hospital billing offices, they’re used to dealing with insurers. They don’t mind that at all, right? This trench warfare trying to get insurers to pay up and dealing with all of their rigmarole in the reimbursement process is something in which they are well trained. But very few people want to deal with what are called self pay patients. They don’t want to be on the phone with poor folks trying to get them to pay up. And so you’re taking a headache off their hands by handing it to a third party debt collector who’s telling you that they’ll bet they’re better at it anyway. So I think a lot of

that has to do with kind of just the, the headache saved and the promised resources, however small they are from turning to this tactic. It just is too easy to do at this point.

Dan: Luke’s book profiles some of the early trailblazers in this headache saving business.

A guy named Michael Barrist founded NCO Financial Systems. A company that bought so much medical debt that they became known as the Walmart of debt collection.

A salesman for the company named Charles Piola was so good at selling the company’s services to doctors offices and hospitals that Inc magazine dubbed him the king of cold calls.

Luke writes that the company’s tactics included contacting patients up to 50 times in four or five months, and finding them at their workplaces. And these were not folks whose training started with a hippocratic oath: Do no harm. That was not their context.

Luke Messac: Their reference points are really other forms of consumer debt. When people don’t pay for their cars, their cars get impounded. When people don’t pay their credit card bills, they get double digit interest rates too. When people don’t pay for their homes, those homes get foreclosed. So when people don’t pay their medical bills, then use the tools at your disposal, including the legal system. 

There was also some concern that if hospitals were too lenient on patients, that they might be running afoul of some Medicare rules about kickbacks. Um, and this is an interesting concern, one that I saw raised in some legal papers, but it’s one that, at least for the last 20 years, the Department of Health and Human Services has tried to allay. And some hospitals have forsworn the practice. There are hundreds of hospitals out there who just do not sue patients, will not sue patients, and will tell you straight out, we don’t do it, we won’t do it. And they’re not getting sued by the federal government for kickbacks, right? So it’s not necessary. You don’t have to do it. And yet hospitals still do.

Dan: Towards the end of the book, you talk about like, how do we reform this system and that this issue of these kind of aggressive debt collection practices kind of rouse the conscience of most everyone. When individual institutions get the spotlight shown on, they generally stop doing it. But it’s not enough. Like it still leaves people with so, so many people with so much debt, with so many bills they can’t pay.

Luke Messac: Yeah. I have a lot of sympathy for people who feel like this problem is just too big. Or that they have other things that they need to do. For patients, often the patients who face this problems, you know, they’re often dealing with their own illnesses and their own debts and their own problems and to ask them to solve the problem themselves doesn’t seem a reasonable solution. But then I also have sympathy for the people who work in hospitals, the doctors, the nurses, the respiratory technicians, the janitors, the administrators, even who feel like their work is harder than ever and that they have enough trouble trying to make sure their patients get decent care and that they’re able to keep their own heads above water while doing it and not burn out and ask them to really look upon a really ugly feature of the healthcare system. And not only imbibe it and make sense of it, but do something about it. That’s asking a lot. And I’m really cognizant of the fact that we’re already asking so much of healthcare workers around the country. But I do think it’s something we need to take on. The best efforts are really the collective ones. And so I would say any possibility of joining up with other like minded folks who are already doing this work is going to be so much more fun, so much more effective.

Dan: Find your people,

Luke Messac: Amen. And then look around and see what your own place is doing your own hospital system because I regret to inform you that some of them won’t be what you hoped, but they are susceptible to pressure. They are capable of shame. And so there is a lot you can do close to home to make sure that your own institution is doing right by patients. Find out if your institution is suing patients. Look up your own hospital’s financial assistance policy and see what sort of extraordinary collection actions they will take against patients. See how patients qualify for free and discounted care and ask yourself is that as much as the hospital system could be doing given their resources. So there’s a lot you could do. Some of it involves grand systemic change, and some of it involves just making sure that where you go to work every day, where you’re training, where you’re studying is a place that you can believe in.

Dan: Luke Messac’s book is “Your Money or Your Life: Debt Collection in American Medicine.” It is out NOW from Oxford University Press. And speaking of right now: NEWSMATCH– is in effect. This is where we raise the biggest piece of our budget for next year, with your help. And the NewsMatch program matches every dollar you give us. The place to go is arm and a leg show dot com, slash, support. 

Next time on “An Arm and a Leg:” For a lot of us, November is open enrollment for next year’s health insurance.

Last year around this time, Ellen Hahn was absolutely scrambling — super creatively.

Ellen Hahn: When I was a kid, I dreamed about being an actor. I didn’t dream about having health insurance. I just kind of thought I would have it.

Dan: She decided to make a short film and cast herself in it. And she raised the money by crowdsourcing online. The title: Ellen Needs Insurance.

Now, the movie’s out, We’ll hear all about it.

And: of course this year, she needs insurance all over again. Plus her union has

been on strike since May. Whoa. We’ll find out what she’s got planned.

That’s in two weeks. Meanwhile, I am saying please do take a minute to pitch in to help us make this show. Every dollar gets matched.

The place to do that is arm and a leg show, dot com, slash support.

That’s arm and a leg show dot com, slash: support

Thank you so much. Catch you in a couple weeks, with  “Ellen Needs Insurance.” Till then, take care of yourself.

This episode of “An Arm and a Leg” was produced by Emily Pisacreta and me, Dan Weissman and edited by Ellen Weiss.

Daisy Rosario is our consulting managing producer. 

Adam Raymonda is our audio wizard. 

Our music is by Dave Winer and Blue Dot Sessions.

Gabrielle Healy is our managing editor for audience. She edits the First Aid Kit Newsletter.

Bea Bosco is our consulting director of operations. 

Sarah Ballema is our operations manager.

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

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

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor, allowing us to accept tax-exempt donations. You can learn more about INN at INN.org

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Mary Agnes Carey
KFF Health News

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Partnerships Editor and Senior Correspondent, oversees placement of KFF Health News content in publications nationwide and covers health reform and federal health policy. Before joining KFF Health News, Mary Agnes was associate editor of CQ HealthBeat, Capitol Hill Bureau Chief for Congressional Quarterly, and a reporter with Dow Jones Newswires. A frequent radio and television commentator, she has appeared on CNN, C-SPAN, the PBS NewsHour, and on NPR affiliates nationwide. Her stories have appeared in The Washington Post, USA Today, TheAtlantic.com, Time.com, Money.com, and The Daily Beast, among other publications. She worked for newspapers in Connecticut and Pennsylvania, and has a master’s degree in journalism from Columbia University.

In most states, open enrollment for plans on the Affordable Care Act exchange — also known as Obamacare — began Nov. 1 and lasts until Dec. 15, though some states go longer. With premiums expected to increase by a median of 6%, consumers who get their health coverage through the federal or state ACA marketplaces are encouraged to shop around. Because of enhanced subsidies and cost-sharing assistance, they might save money by switching plans.

Meanwhile, Ohio is yet again an election-year battleground state. A ballot issue that would provide constitutional protection to reproductive health decisions has become a flashpoint for misinformation and message testing.

This week’s panelists are Mary Agnes Carey of KFF Health News, Jessie Hellmann of CQ Roll Call, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Rachana Pradhan of KFF Health News.

Panelists

Jessie Hellmann
CQ Roll Call

@jessiehellmann

Read Jessie's stories

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Rachana Pradhan
KFF Health News

@rachanadpradhan

Read Rachana's stories

Among the takeaways from this week’s episode:

• Open enrollment for most plans on the Affordable Care Act exchange — also known as Obamacare — began Nov. 1 and lasts until Dec. 15, though enrollment lasts longer in some states. With premiums expected to increase by a median of 6%, consumers are advised to shop around. Enhanced subsidies are still in place post-pandemic, and enhanced cost-sharing assistance is available to those who qualify. Many people who have lost health coverage may be eligible for subsidies.
• In Ohio, voters will consider a ballot issue that would protect abortion rights under the state constitution. This closely watched contest is viewed by anti-abortion advocates as a testing ground for messaging on the issue. Abortion is also key in other races, such as for Pennsylvania’s Supreme Court and Virginia’s state assembly, where the entire legislature is up for election.
• Earlier this week, President Joe Biden issued an executive order that calls on federal agencies, including the Department of Health and Human Services, to step into the artificial intelligence arena. AI is a buzzword at every health care conference or panel these days, and the technologies are already in use in health care, with insurers using AI to help make coverage decisions. There is also the recurring question, after many hearings and much discussion: Why hasn’t Congress acted to regulate AI yet?
• Our health care system — in particular the doctors, nurses, and other medical personnel — hasn’t recovered from the pandemic. Workers are still burned out, and some have participated in work stoppages to make the point that they can’t take much more. Will this be the next area for organized labor, fresh from successful strikes against automakers, to grow union membership? Take pharmacy workers, for instance, who are beginning to stage walkouts to push for improvements.
• And, of course, for the next installment of the new podcast feature, “This Week in Medical Misinformation:” The official government website of the Republican-controlled Ohio Senate is attacking the proposed abortion amendment in what some experts have said is a highly unusual and misleading manner. Headlines on its “On The Record” blog include “Abortion Is Killing the Black Community” and say the ballot measure would cause “unimaginable atrocities.” The Associated Press termed the blog’s language “inflammatory.”

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

Mary Agnes Carey: Stat News’ “The Health Care Issue Democrats Can’t Solve: Hospital Reform,” by Rachel Cohrs.

Jessie Hellmann: The Washington Post’s “Drugstore Closures Are Leaving Millions Without Easy Access to a Pharmacy,” by Aaron Gregg and Jaclyn Peiser.

Joanne Kenen: The Washington Post’s “Older Americans Are Dominating Like Never Before, but What Comes Next?” by Marc Fisher.

Rachana Pradhan: The New York Times’ “How a Lucrative Surgery Took Off Online and Disfigured Patients,” by Sarah Kliff and Katie Thomas.

Click to open the Transcript

Transcript: For ACA Plans, It’s Time to Shop Around

[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, and welcome back to “What the Health?” I’m Mary Agnes Carey, partnerships editor for KFF Health News, filling in this week for Julie Rovner. I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Nov. 2, at 10 a.m. ET. As always, news happens fast, and things might’ve changed by the time you hear this.

We are joined today via video conference by Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Joanne Kenen: Hi, everybody.

Carey: Jessie Hellmann, of CQ Roll Call.

Jessie Hellmann: Hey there.

Carey: And my KFF Health News colleague Rachana Pradhan.

Rachana Pradhan: Thanks for having me.

Carey: It’s great to have you here. It’s great to have all of you here. Let’s start today with the Affordable Care Act. If you’re interested in enrolling in an ACA plan for coverage that begins Jan. 1, it’s time for you to sign up. The ACA’s open enrollment period began Nov. 1 and lasts through Dec. 15 for plans offered on the federal exchange, but some state-based ACA exchanges have longer enrollment periods. Consumers can go online, call an 800 number, get help from an insurance broker or from other ACA navigators and others who are trained to help you research your coverage options, help you find out if you qualify for a subsidy, or if you should consider changing your ACA plan.

What can consumers expect this year during open enrollment? Are there more or fewer choices? Are premiums increasing?

Hellmann: So, I saw the average premium will increase about 6%. So people are definitely going to want to shop around and might not necessarily just want to stick with the same plan that they had last year. And we’re also going to continue seeing the enhanced premiums, subsidies, that Congress passed last year that they kind of stuck with after the pandemic. So subsidies might be more affordable for people — I’m sorry, premiums might be more affordable for people. There’s also some enhanced cost-sharing assistance.

Carey: So it kind of underscores the idea that if you’re on the ACA exchange, you really should go back and take a look, right? Because there might be a different deal out there waiting.

Kenen: I think the wrinkle — this may be what you were just about to ask — but the wrinkle this year is the Medicaid disenroll, the unwinding. There are approximately 10 million, 10 million people, who’ve been disenrolled from Medicaid. Many of them are eligible for Medicaid, and at some point hopefully they’ll figure out how to get them back on. But some of those who are no longer eligible for Medicaid will probably be eligible for heavily subsidized ACA plans if they understand that and go look for it.

This population has been hard to reach and hard to communicate with for a number of reasons, some caused by the health system, not the people, or the Medicaid system, the states. They do have a fallback; they have some extra options. But a lot of those people should click and see what they’re eligible for.

Pradhan: One thing, kind of piggybacking on what Joanne said, that I’m really interested in: Of course, right now is a time when people can actively sign up for ACA plans. But the people who lost Medicaid, or are losing Medicaid — technically, the state Medicaid agency, if they think that a person might qualify for an ACA plan, they’re supposed to automatically transfer those people’s applications to their marketplace, whether it’s healthcare.gov or a state-based exchange. But the data we have so far shows really low enrollment rates into ACA plans from those batches of people that are being automatically transferred. So I’m really curious about whether that’s going to improve and what does enrollment look like in a few months to see if those rates actually increase.

Carey: I’m also wondering what you’re all picking up on the issue of the provider networks. How many doctors and hospitals and other providers are included in these plans? Are they likely to be smaller for 2024? Are they getting bigger? Is there a particular trend you can point to?

I know that sometimes insurers might reduce the number of providers, narrow that network, for example to lower costs. So I guess that remains to be seen here.

Kenen: I haven’t seen data on the ACA plans, and maybe one of the other podcasters has. I haven’t seen that. But we do know that in certain cities, including the one we all live in [Washington, D.C.], many doctors are stopping, are no longer taking insurance. I mean, it’s not most, but the number of people who are dropping being in-network in some of the major networks that we are used to, I think we have all encountered that in our own lives and our friends’ and families’ lives. There are doctors opting out, or they’re in but their practices are closed; they’re not taking more patients, they’re full.

I don’t want to pretend I know how much worse it is or isn’t in ACA plans, but we do know that this is a trend for multiple years. In some parts of the country, it’s getting worse.

Hellmann: Yeah, the Biden administration has been doing some stuff to try to address some of these problems. Last year there were some rules requiring health plans have enough in-network providers that meet specific driving time and distance requirements. So, they are trying to address this, but I wouldn’t be surprised if some of these plans’ networks are still pretty narrow.

Pradhan: Yeah. I mean, I think the concern for a while now with ACA plans is because insurance companies can’t do the things that they did a decade ago to limit premium increases, etc., one of the ways they can keep their costs down is to curtail the number of available providers for someone who signs up for one of these plans. So, like Jessie, I’m curious about how those new rules from last year will affect whether people see meaningful differences in the availability of in-network providers under specific plans.

Carey: That and many other trends are worth watching as we head into the open enrollment season. But right now, I’d like to turn to another topic in the news, and that’s abortion. “What the Health?” listeners know that last week your host, Julie Rovner, created a new segment that she’s calling “This Week in Health Care Misinformation.” Here’s this week’s entry.

A measure before Ohio voters next Tuesday, that’s Nov. 7, would amend Ohio’s constitution to guarantee the right to reproductive health care decisions, including abortion. Abortion rights opponents say the measure is crafted too broadly and should not be approved. The official government website of the Republican-controlled Ohio Senate is attacking the proposed abortion amendment in what some experts have said is a highly unusual and misleading manner. Headlines on the “On The Record” blog — and that’s what it’s called, “On The Record”; this is on the Ohio state website — it makes several claims about the measure that legal and medical experts have told The Associated Press were false or misleading. Headlines on this site include, and I’m quoting here, “Abortion Is Killing the Black Community” and that the proposal would cause, again, another quote, “unimaginable atrocities.” Isn’t it unusual for an official government website to operate in this manner?

Pradhan: I think yes, as far as we know, and that’s really scary. It’s hard enough these days to sort out what is legitimate and what isn’t. We’ve seen AI [artificial intelligence] used in other political campaign materials in the forms of altered videos, photographs, etc. But now this is a really terrifying prospect, I think, that you could provide misinformation to voters — particularly in close races, I would say, that you could really swing an outcome based on what people are being told.

Kenen: The other thing that’s being said in Ohio by the Republicans is that the measure would allow, quote, “partial-birth abortions,” which is a particular — it’s a phrase used to describe a particular type of late-term abortion that’s illegal. Congress passed legislation, I think it’s 15 to 20 years ago now, and it went through the courts and it’s been upheld by the courts. This measure in Ohio does not undo federal law in the state of Ohio or anywhere else. So that’s not true. And that’s another thing circulating.

Carey: This discussion is very important. And to Rachana’s point, how voters perceive this is very important because Ohio is serving as a testing ground for political messaging headed into the presidential race next year. And abortion groups are trying to qualify initiatives in more states in 2024, potentially including Arizona. So even if you haven’t followed this story closely, I mean, how do you think this tactic may influence voters? Again, you’re talking about something — when you hit a news tab on an official state website, you come to this blog. Do you think voters will reject it? Could it possibly influence them — as you were talking about earlier, tip the results?

Kenen: Well, I don’t think we know how it’s going to tip, because I don’t know how many people actually read the state legislature blog.

Carey: Yeah, that could be an issue.

Kenen: Although, and the coverage of it, one would hope, in the state media would point out that some of these claims are untrue. But I mean, it’s taking — you know, the Republicans have lost every single state ballot initiative on abortion, and it’s been a winning issue for the Democrats and they’re trying to reframe it a little bit, because while polls have shown — not just polls, but voting behavior has shown — many Americans want abortion to remain legal, they aren’t as comfortable with late-term abortions, with abortions in the final weeks or months of pregnancy. So this is trying to shift it from a general debate over banning abortion, which is not popular in the U.S., to an area where there’s softer support for abortions later during pregnancy.

And polls have shown really strong support for abortion rights. But this is an area that is not as strong, or a little bit more open to maybe moving people. And if the Republicans succeed in portraying this as falsely allowing a procedure that the country has decided to ban, I think that’s part of what’s going on, is to shift the definition, shift the terms of debate.

Carey: As we know, Ohio is not the only state where abortion is taking center stage. For example, in Pennsylvania, abortion is a key issue in the state Supreme Court justice election, and it’s a test case of political fallout from the Supreme Court, the United States Supreme Court’s decision last summer to overrule Roe v. Wade. In Texas, the state is accusing Planned Parenthood of defrauding the Republican-led state’s Medicaid health insurance program. And in Kansas, in a victory for abortion rights advocates, a judge put a new state law on medication abortions on hold and blocked other restrictions governing the use and distribution of these medications and imposed waiting periods.

And of course, abortion remains a huge issue on Capitol Hill, with House Republicans inserting language into many spending bills to restrict abortion access, to block funding for HIV prevention, contraception, global health programs, and so on. So, which of these cases, or others maybe that you are watching, do you think will be the strongest indicators of how the abortion battle will shake out for the rest of this year and into 2024?

Pradhan: I’m actually going to make a plug for another one that we didn’t mention, which is for our local, D.C.-area listeners, Virginia next week has a state legislative election. So, Gov. [Glenn] Youngkin of course is still — he’s not up for reelection; he’ll sit one single four-year term, but the entire Virginia General Assembly is up for election. So currently Gov. Youngkin says that he wants to institute a 15-week abortion ban, but Republicans would need to control every branch of government, which they do not currently, but it is possible that they will after next week. So that would be a big change as you see abortion restrictions that have proliferated, especially throughout the South and the Midwest. But now Virginia so far has not, in the wake of last year’s Dobbs [v. Jackson Women’s Health Organization] decision, has not imposed greater restrictions on access to abortion.

But I think the 15-week limit also provides kind of a test case, I think, for whether Republicans might be able to coalesce around that standard as opposed to something more aggressive like, say, a total ban or a six-week ban that’s obviously been instituted in certain states but I think at a national level right now is a nonstarter. I’m pretty interested in seeing what happens even in a lot of our own backyard.

Kenen: Because Virginia’s really tightly divided. I mean, the last few elections. This was a traditional Republican state that has become a purple state. And the last few state legislature elections, didn’t they once decide by drawing lots? It was so close. I mean it’s flipped back. It’s really, really, really tiny margins in both houses. I think Rachana lives there and knows the details better than I do. But it’s razor-thin, and it was Republican-controlled for a long time and Democrats, what, have one-seat-in-the-Senate control? Something like that, a very narrow margin. And they may or may not keep it.

Pradhan: Joanne, your memory’s so good, because they had —

Kenen: Because I edited your stories.

Pradhan: You did. I know. And they had to draw names out of a bowl that was— it was in a museum. It was something that a Virginia potter had made and they had to take it out of a museum exhibit. I mean, it was the most — it’s really fascinating what democracy can look like in this country when it comes down to it. It was such a bizarre situation to decide control of the state House. So you’re very right, so it’s very close.

Kenen: It’s also worth pointing out, as we have in prior weeks, that 15 weeks is now being offered as this sort of moderate position, when 15 weeks — a year ago, that’s what the Supreme Court case was really about, the case we know as Dobbs. It was about a law in Mississippi that was a 15-week ban. And what happened is once the courts gave the states the go-ahead, they went way further than 15 weeks. I don’t know how many states have a 15-week ban, not many. The anti-abortion states now have sort of six weeks-ish or less. North Carolina has 12, with some conditions. So 15 weeks is now Youngkin saying, “Here’s the middle ground.” I mean, even when Congress was trying to do a ban, it was 20, so — when they had those symbolic votes, I think it was always 20. He’s changed the parameters of what we’re talking about politically.

Carey: Jessie, how do you see the abortion riders on these appropriations bills, particularly in the House. House Republicans have put a lot of this abortion language into the approps bills. How do you see that shaking out, resolving itself, as we look forward?

Hellmann: It is hard to see how some of these riders could become law, like the one in the FDA-Ag approps bill that would basically ban mailing of mifepristone, which can be used for abortions. Even some moderate Republicans who are really against that rider — I mean just a handful, but it’s enough where it should just be a nonstarter. So I’m just not sure how I can see a compromise on that right now. And I definitely don’t see how that could pass the Senate. So it’s just everything has become so much more contentious since the Roe decision. And things that weren’t contentious before, like the PEPFAR [The United States President’s Emergency Plan for AIDS Relief] reauthorization, are now being bogged down in abortion politics. It’s hard to see how the two sides can come to an agreement at this point.

Carey: Yes, contentious issues are everywhere. So, let’s switch from abortion to AI. Earlier this week, President Biden issued an executive order that calls on several federal agencies, including the Department of Health and Human Services, to create regulations governing the use of AI, including in health care. What uses of AI now in health care, or even future uses, are causing the greatest concern and might be the greatest focus of this executive order? And I’m thinking of things that work well in AI or are accepted, and things that maybe aren’t accepted at this point or people are concerned about.

Kenen: I think that none of us on the panel are super AI experts.

Carey: Nor am I, nor am I.

Kenen: But we are all following it and learning about it the way everybody else is. I think this is something that Vice President Harris pointed out in a summit in London on AI yesterday. There’s a lot of focus on the existential, cosmic scary stuff, like: Is it going to kill us all? But there’s also practical things right now, particularly in health care, like using algorithms to deny people care. And there’s been some exposés of insurance doing batch denials based on an AI formula. There’s concerns about — since AI is based on the data we have and the data, that’s the foundation, that’s the edifice. So the data we have is flawed, there’s racial bias in the data we have. So how do you make sure the algorithms in the future don’t bake in the inequities we already have? And there’s questions too about AI is already being used clinically, and how well does it really work? How reliable are the studies and the data? What do we know or not know before we start?

I mean, it has huge potential. There are risks, but it also has huge potential. So how do we make sure that we don’t have exaggerated happy-go-lucky mistrust in technology before we actually understand what it can and cannot do and what kind of safeguards the government —and the European governments as well; it’s not just us, and they may do a better job — are going to be in place so that we have the good without … The goal is sort of, to be really simplistic about it, is let’s have the good without the bad, but doing it is challenging.

Carey: Oh, Rachana, please.

Pradhan: Well, all I was going to say was nowadays you cannot go to a health care conference or a panel discussion without there being some session about AI. I guess it demonstrates the level of interest. It kind of reminds me of every few years there’s a new health care unicorn. So there was ACOs [accountable care organizations] for a long time; that’s all people would talk about. Or value-based care, like every conference you went to. And then with covid, and for other reasons, everyone is really big on equity, equity, equity for a long time. And now it’s like AI is everywhere.

So like Joanne said, I mean, we have everything from a chatbot that pops up on your screen to answer even benign questions about insurance. That’s AI. It’s a form of AI. It’s not generative AI, but it is. And yeah, I mean, insurance companies use all sorts of algorithms and data to make decisions about what claims they’re going to pay and not pay. So yeah, I think we all just have to exercise some skepticism when we’re trying to examine how this might be used for good or bad.

Kenen: I just want a robot to clean my kitchen. Why doesn’t anyone just handle the … Silicon Valley does the really important stuff.

Carey: That would be a use for good in your house, in my house, in all our houses.

Kenen: Yeah.

Carey: So, while we’re understandably and admittedly not AI experts, we are experts on Congress here. And the president did say in his announcement earlier this week that Congress still needs to act on this issue. Why haven’t they done it yet? They’ve had all these hearings and all this conversation about crafting rules around privacy, online safety, and emerging technologies. Why no action so far? And any bets on whether it may or may not happen in the near future?

Hellmann: I think they don’t know what to do. We’ve only, as a country, started really talking about AI at kitchen tables, to use a cliche, this year. And so Congress is always behind the eight ball on these issues. And even if they are having these member meetings and talking about it, I think it could take a long time for them to actually pass any meaningful legislation that isn’t just directing an agency to do a study or directing an agency to issue regulations or something that could have a really big impact.

Carey: Excellent. Thank you. So let’s touch briefly — before we wrap, I really do want to get to this point and some of the stuff we continue to see in the news about health care workers under fire. It’s certainly not easy to be a health care worker these days. New findings published by the Centers for Disease Control and Prevention show that, in 2022, 13.4% of health workers said they had been harassed at work. That’s up from 6.4% in 2018. That’s more than double the rate of workplace harassment compared to pre-pandemic times, the CDC found.

We’ve talked about this before. It’s worth revisiting again. What is going on with our health care workforce? And what do these kind of findings mean for keeping talented people in the workforce, attracting new people to join?

Hellmann: Has anyone actually caught a break after the pandemic?

Carey: That’s a good point.

Hellmann: I mean, covid is still out there, but I don’t think that our health care system has really recovered from that. People have left the workforce because they’re burned out. People still feel burned out who stuck around, and I don’t know if they really got any breaks or the support that they needed. There’s just kind of this recognition of people being burned out. But I don’t know how much action there is to address the issue.

I feel like sometimes that leads to more burnout, when you see executives and leaders acknowledging the problem but then not really doing much to address it.

Carey: Well, that’s certainly been the complaint by pharmacy staff and others and pharmacists at some of the large drugstore chains, retail chains, that have gone out on strike. They’ve had these two- and three-day strikes recently. So, I’m assuming that will continue, unfortunately, for all the reasons that Jessie just laid out.

Pradhan: Actually, kind of going back to the strikes from pharmacists, I was thinking about this earlier because we’ve seen recently, I think separately in the news when it comes to labor unions, and maybe this will have some bearing, maybe not, but the United Auto Workers strike — I mean, they extracted some of the largest concessions from automakers as far as pay increases. And people are seeing, they really got a victory after striking for weeks. And I think people, at least the coverage that I’ve seen has talked about how that union win might not just catalyze greater labor union involvement, not just in the auto industry but in other parts of the country and other sectors.

And so, I’m not sure what percentage of pharmacists are part of labor unions, but I think people have sort of said more recently that organized labor is having a moment, or has been, that it has not in a while. And so, I’ll be fascinated to see whether there’s a greater appetite among pharmacists to actually be part of a labor union and sort of whether that results in greater demands of some of these corporate chains. As we know — we can talk about this I think in a little bit — but the corporate chains have really taken over pharmacies in America, and rural pharmacies are really dying off. And so that has a lot of important implications for the country.

Kenen: I think the problems with the health care workforce are not all things that labor unions can address, because some of it is how many hours you work and what kind of shifts you have and how often they change and things that — yeah, I mean, labor is having a moment, Rachana’s right. But they’re also tied to larger demographic trends, with an aging society. It’s tied to, our whole system is geared toward the, like dean of nursing at [Johns] Hopkins Sarah Szanton is always talking about, it’s not so much not having enough nurses; we’ve got them in the wrong places. If we did more preventive care and community care and chronic disease management in the community, you wouldn’t have so many people in the hospital in the first place where the workforce crisis is.

So some of these larger issues of how do we have a better health care system; labor negotiations can address aspects of it. Nursing ratios are controversial, but that’s a labor issue. It’s a regulatory issue as well. But our whole system’s so screwed up now that Jessie’s right, nobody recovered from the strains of the pandemic in many sectors, probably all sectors of society, but obviously particularly brutal on the health care workforce. We didn’t get to hit pause and say, OK, nobody get sick for six months while we all recover. The unmet psychiatric needs. I mean, it’s just tons of stuff is wrong, and it’s manifesting itself in a workforce crisis. So maybe if you don’t have anyone to take care of you, maybe people will pay attention to the larger underlying reasons for that.

Carey: That’s an issue I’m sure we will talk more about in the future because it’s just not going anywhere. But for now, we’re going to turn to our extra credit segment. That’s when we each recommend a story we read this week and 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.

Joanne, why don’t you go first this week?

Kenen: Well, speaking of which, after we just talked about, there’s a piece in The Washington Post by Marc Fisher. It has a long headline: “Older Americans Are Dominating Like Never Before, but What Comes Next?” And basically it’s talking about not so much the nursing and physician workforce, although that’s part of it, just the workforce in general. We have more people working longer, and in areas where there’s shortages, there’s nothing wrong with having old people. A lot of communities have shortages of school bus drivers. So if you have a lot of older school bus drivers and they’re safe and like kids and like driving the bus, more power to them. If you’re 55 and you can drive a school bus full of nine-year-olds, middle schoolers, so much more.

Carey: Good luck with that one.

Kenen: But some of the physician specialties — one of the people in the story is a palliative care physician who retired and isn’t happy retired and wants to go back to work. And that’s another area where we need more people. But it’s a cultural shift, like, who’s doing what when, and how does it affect the younger generation? Although there was a reference to Angelina Jolie being on the old side at 48. I guess for an actress that might be old. But that wasn’t the gist of it. But we have this shift toward older people in many places, not just Trump and Biden. It’s sort of the whole workforce.

Carey: Got it. Jessie.

Hellmann: My extra credit is also a story from The Washington Post. It’s called “Drugstore Closures Are Leaving Millions Without Easy Access to a Pharmacy.” Focused specifically on some of the big national chains like CVS and Walgreens and Rite Aid, which have really kind of dominated the drugstore space over the past few decades. But now they are dealing with the repercussions from all these lawsuits that are being filed alleging they had a role in the opioid epidemic. And the story just kind of looks at the consequences of that.

These aren’t just places people get prescriptions. They rely on them for food, for medical advice, especially in rural and underserved areas. So yeah, I just thought it was a really interesting look at that issue.

Carey: Rachana?

Pradhan: So my extra credit is a story in The New York Times called “How a Lucrative Surgery Took Off Online and Disfigured Patients.” It’s horrifying. It’s a story about surgeons who are performing a complex type of hernia surgery and evidently are learning their techniques, or at least a large share of them are learning their techniques, by watching videos on social media. And the techniques that are demonstrated there are not exactly high quality. So the story digs into resulting harm to patients.

Kenen: And it’s unnecessary surgery in the first place — for many, not all. But it’s a more complicated procedure than they even need in a large portion of these patients.

Carey: My extra credit is written by Rachel Cohrs of Stat, and she’s a frequent guest on this program. Her story is called “The Health Care Issue Democrats Can’t Solve: Hospital Reform.” While Democrats have seized on lowering health care costs as a politically winning issue — they’ve taken on insurers and the drug industry, for example — Rachel writes that hospitals may be a health care giant they’re unable to confront alone, and they being the Democrats. As we know, hospitals are major employers in many congressional districts. There’s been a lot of consolidation in the industry in recent years. And hospital industry lobbyists have worked hard to preserve the image that they are the good guys in the health care industry, Rachel writes, while others, like pharma, are not.

Well, that’s 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 others find us too. Special thanks, as always, to our engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you could still find me on X. I am @maryagnescarey. Rachana?

Pradhan: I am @rachanadpradhan on X.

Carey: Jessie.

Hellmann: @jessiehellmann.

Carey: And Joanne.

Kenen: I’m occasionally on X, @JoanneKenen, and I’m trying to get more on Threads, @joannekenen1.

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

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The world is entering a new era of vaccines. Following the success of covid-19 mRNA shots, scientists have a far greater capacity to tailor shots to a virus’s structure, putting a host of new vaccines on the horizon.

The most recent arrivals — as anyone on the airwaves or social media knows — are several new immunizations against respiratory syncytial virus, or RSV.

These shots are welcome since RSV can be dangerous, even deadly, in the very old and very young. But the shots are also expensive — about $300 for those directed at adults, and up to $1,000 for one of the shots, a monoclonal antibody rather than a traditional vaccine, intended for babies. Many older vaccines cost pennies.

So their advent is forcing the United States to face anew questions it has long sidestepped: How much should an immunization that will possibly be given — maybe yearly — to millions of Americans cost to be truly valuable? Also, given the U.S. is one of two countries that permit direct advertising to consumers: How can we ensure the shots get into the arms of people who will truly benefit and not be given, at great expense, to those who will not?

Already, ads on televisions and social media show active retirees playing pickleball or going to art galleries whose lives are “cut short by RSV.” This explains the lines for the shot at my local pharmacy.

But indiscriminate use of expensive shots could strain both public and private insurers’ already tight budgets.

Other developed countries have deliberate strategies for deciding which vulnerable groups need a particular vaccine and how much to pay for it. The U.S. does not, and as specialized vaccines proliferate, public programs and private insurers will need to grapple with how to use and finance shots that can be hugely beneficial for some but will waste precious health dollars if taken by all.

A seasonal viral illness, RSV can cause hospitalization or, in rare cases, death in babies and in people age 75 or older, as well as those with serious underlying medical conditions such as heart disease or cancer. For most people who get RSV, it plays out as a cold; you’ve likely had RSV without knowing it.

But RSV puts about 2% of babies under age 1 in the hospital and kills between 100 and 300 of those under 6 months, because their immune systems are immature and their airways too narrow to tolerate the inflammation. Merely having a bad case of RSV in young childhood increases the risk of long-term asthma.

That’s why Barney Graham, the scientist who spent decades at the government’s National Institutes for Health perfecting the basic science that led to the current shots, said: “The most obvious use is in infants,” not adults.

That’s also why European countries trying to figure out how best to use these vaccines without breaking the bank focused first on babies and determining a sensible price. Though more of the very old may die of RSV, the years of life lost are much greater for the very young. (Babies can get the monoclonal antibody shot or gain protection through a traditional vaccine given to the mother near the end of pregnancy, conferring immunity through the womb.)

A consortium of European experts led by Philippe Beutels, a professor in health economics at the University of Antwerp in Belgium, calculated that the shots would only be “worth it” in terms of the lives saved and hospitalizations averted in infants if the price were under about $80, he said in a phone interview. That’s because almost all babies make it through RSV with supportive care.

The calculation will be used by countries such as Belgium, England, Denmark, Finland, and the Netherlands to negotiate a set price for the two infant shots, followed by decisions on which version should be offered, depending partly on which is more affordable.

They have not yet considered how to distribute the vaccines to adults — considered less pressing — because studies show that RSV rarely causes severe disease in adults who live outside of care settings, such as a nursing home.

Why did the United States and Europe approach the problem from opposite directions?

In the U.S., there was a financial incentive: Roughly 3.7 million babies are born each year, while there are about 75 million Americans age 60 and older — the group for whom the two adult vaccines were approved. And about half of children get their vaccines through the Vaccines for Children program, which negotiates discounted prices.

Also, babies can get vaccinated only by their clinicians. Adults can walk into pharmacies for vaccinations, and pharmacies are only too happy to have the business.

But which older adults truly benefit from the shot? The two manufacturers of the adult vaccines, GSK and Pfizer, conducted their studies presented to the FDA for approval in a population of generally healthy people 60 and older, so that’s the group to whom they may be marketed. And marketed they are, even though the studies didn’t show the shots staved off hospitalization or death in people ages 60 to 75.

That led to what some have called a “narrow” endorsement from the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices for people 60 to 75: Patients in that age range could get the shot after “shared clinical decision-making” with a health provider.

It is likely that because of this fuzzy recommendation, some Americans 60 and over with commercial insurance are finding that their insurers won’t cover it. Under Obamacare, insurers are generally required to cover at no cost vaccines that are recommended by the ACIP; however, if a provider recommends vaccination, then it must be covered by insurance.

(In late September, the ACIP recommended immunization of all babies with either the antibody or the maternal vaccine. Insurers have a year to commence coverage and many have been dragging their feet because of the high price.)

There are better and more equitable ways to steer the shots into the arms of those who need it, rather than simply administering it to those who have the “right” insurance or, swayed by advertising, can pay. For example, insurers, including Medicare, could be required to cover only those ages 60 to 75 who have a prescription from a doctor, indicating shared decision-making has occurred.

Finally, during the pandemic emergency, the federal government purchased all covid-19 vaccines in bulk at a negotiated price, initially below $20 a shot, and distributed them nationally. If, to protect public health, we want vaccines to get into the arms of all who benefit, that’s a more cohesive strategy than the patchwork one used now.

Vaccines are miraculous, and it’s great news that they now exist to prevent serious illness and death from RSV. But using such novel vaccines wisely — directing them to the people who need them at a price they can afford — will be key. Otherwise, the cost to the health system, and to patients, could undermine this big medical win.

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

USE OUR CONTENT

This story can be republished for free (details).