The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

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

Even without covid dominating the headlines, 2023 was a busy year for health policy. The ever-rising cost of health care remained an issue plaguing patients and policymakers alike, while millions of Americans lost insurance coverage as states redetermined eligibility for their Medicaid programs in the wake of the public health emergency.

Meanwhile, women experiencing pregnancy complications continue to get caught up in the ongoing abortion debate, with both women and their doctors potentially facing prison time in some cases.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs of Stat, Sandhya Raman of CQ Roll Call, and Joanne Kenen of Johns Hopkins University and Politico Magazine.

Panelists

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Sandhya Raman
CQ Roll Call

@SandhyaWrites

Read Sandhya's stories

Among the takeaways from this week’s episode:

• As the next election year fast approaches, the Biden administration is touting how much it has accomplished in health care. Whether the voting public is paying attention is a different story. Affordable Care Act enrollment has reached record levels due in part to expanded financial help available to pay premiums, and the administration is also pointing to its enforcement efforts to rein in high drug prices.
• The federal government is adding staff to go after “corporate greed” in health care, targeting in particular the fast-growing role of private equity. The complicated, opaque, and evolving nature of corporate ownership in the nation’s health system makes legislation and regulation a challenge. But increased interest and oversight could lead to a better understanding of the problems of and, eventually, remedies for a profit-focused system of health care.
• Concluding a year that saw many low-income Americans lose insurance coverage as states reviewed eligibility for everyone in the Medicaid program, there’s no shortage of access issues left to tackle. The Biden administration is urging states to take action to help millions of children regain coverage that was stripped from them.
• Also, many patients are all too familiar with the challenges of obtaining insurance approval for care. There is support in Congress to scrutinize and rein in the use of algorithms to deny care to Medicare Advantage patients based on broad comparisons rather than individual patient circumstances.
• And in abortion news, some conservative states are trying to block efforts to put abortion on the ballot next year — a tactic some used in the past against Medicaid expansion.
• This week in health misinformation is an ad from Florida’s All Family Pharmacy touting the benefits of ivermectin for treating covid-19. (Rigorous scientific studies have found that the antibacterial drug does not work against covid and should not be used for that purpose.)

Also this week, Rovner interviews KFF Health News’ Jordan Rau about his joint KFF Health News-New York Times series “Dying Broke.”

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

Julie Rovner: Business Insider’s “‘I Feel Conned Into Keeping This Baby,’” by Bethany Dawson, Louise Ridley, and Sarah Posner.

Joanne Kenen: The Trace’s “Chicago Shooting Survivors, in Their Own Words,” by Justin Agrelo.

Rachel Cohrs: ProPublica’s “Doctors With Histories of Big Malpractice Settlements Work for Insurers, Deciding if They’ll Pay for Care,” by Patrick Rucker, The Capitol Forum; and David Armstrong and Doris Burke, ProPublica.

Sandhya Raman: Roll Call’s “Mississippi Community Workers Battle Maternal Mortality Crisis,” by Lauren Clason.

Also mentioned in this week’s episode:

• Stat News’ “Humana Used Algorithm in ‘Fraudulent Scheme’ to Deny Care to Medicare Advantage Patients, Lawsuit Alleges,” by Casey Ross and Bob Herman.
• USA Today’s “Cigna Denied a Lung Transplant for a Cancer Patient. Insurer Now Says That Was an Eerror.’ By Ken Alltucker.
• Politico’s “Conservatives Move to Keep Abortion off the 2024 Ballot,” by Alice Miranda Ollstein and Megan Messerly.
• The New York Times’ “Why Democracy Hasn’t Settled the Abortion Question,” by Kate Zernike.

click to open the transcript

Transcript: 2023 Is a Wrap

KFF Health News’ ‘What the Health?’Episode Title: 2023 Is a WrapEpisode Number: 327Published: Dec. 21, 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, Dec. 21, 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 Joanne Kenen of the Johns Hopkins University and Politico Magazine.

Joanne Kenen: Hi, everybody.

Rovner: Sandhya Raman of CQ Roll Call.

Sandhya Raman: Good morning.

Rovner: And Rachel Cohrs of Stat News.

Rachel Cohrs: Hi.

Rovner: Later in this episode, we’ll have my interview with KFF Health News’ Jordan Rau, co-author of a super scary series done with The New York Times about long-term care. It’s called “Dying Broke.” But first, this week’s news. I thought we would try something a little bit different this week. It just happened that most of this week’s news also illustrates themes that we’ve been following throughout the year. So we get a this-week update plus a little review of the last 12 months, since this is our last podcast of the year. I want to start with the theme of, “The Biden administration has gotten a ton of things done in health, but nobody seems to have noticed.”

We learned this week that, with a month still to go, Affordable Care Act plan sign-ups are already at historic highs, topping 15 million, thanks, at least in part, to extra premium subsidies that the administration helped get past this Congress and which Congress may or may not extend next year. The administration has also managed to score some wins in the battle against high drug prices, which is something that has eluded even previous Democratic administrations. Its latest effort is the unveiling of 48 prescription drugs officially on the naughty list — that’s my phrase, not theirs — for having raised their prices by more than inflation during the last quarter of this year, and whose manufacturers may now have to pay rebates. This is something in addition to the negotiations for the high-priced drugs, right, Rachel?

Cohrs: Yeah, this was just a routine announcement about the drugs that are expected to be charged rebates and drugmakers don’t have to pay immediately; I think they’re kind of pushing that a little further down the road, as to when they’ll actually invoice those rebates. But the announcement raised a question in my mind of — certainly they want to tout that they’re enforcing the law; that’s been a big theme of this year — but it brought up a question for me as to whether the law is working to deter price hikes if these companies are all doing it anyway, so just a thought.

Rovner: It is the first year.

Cohrs: It is. This started going into effect at the end of last year, so it’s been a little over a year, but this is assessed quarterly, so the list has grown as time has gone on. But just a thought. Certainly there’s time for things to play out differently, but that’s at least what we’ve seen so far.

Rovner: They could say, which they did this week, it’s like, Look, these are drugs because they raised the prices, they’re going to have to give back some of that money. At least in theory, they’re going to have to give back some of that money.

Cohrs: In Medicare.

Rovner: Right. In Medicare. Some of this is still in court though, right?

Cohrs: Yes. So I think at any moment, I think this has been a theme of this year and will be carrying into next year, that there are several lawsuits filed by drugmakers, by trade associations, that just have not been resolved yet, and I think some of the cases are close to being fully briefed. So we may see kind of initial court rulings as to whether the law as a whole is constitutional. It is worth noting that most of those lawsuits are solely challenging the negotiation piece of the law and not the inflation rebates, but this could fall apart at any moment. There could be a stay, and I expect that the first court ruling is not going to be the last. There’s going to be a long appeals process. Who knows how long it’s going to take, how high it will go, but I think there is just a lot of uncertainty around the law as a whole.

Rovner: So the administration gets to stand there and say, “We did something about drug prices,” and the drug companies get to stand there and say, “Not yet you didn’t.”

Cohrs: Exactly. Yes, and they can both be correct.

Rovner: That’s basically where we are.

Cohrs: Yes.

Rovner: That’s right. Well, meanwhile, in other news from this week and from this year, the Federal Trade Commission, the Department of Justice, and the Department of Health and Human Services are all adding staff to go after what Biden officials call “corporate greed” — that is their words — in health care. Apparently these new staffers are going to focus on private equity ownership of health care providers, something we have talked about a lot and so-called roll-ups, which we haven’t talked about as much. Somebody explain what a roll-up is please.

Kenen: Julie, why don’t you?

Rovner: OK. I guess I’m going to explain what a roll-up is. I finally learned what a roll-up is. When companies merge and they make a really big company, then the Federal Trade Commission gets to say, “Mmm, you may be too big, and that’s going to hurt trade.” What a roll-up is is when a big company goes and buys a bunch of little companies, so each one doesn’t make it too big, but together they become this enormous — either a hospital system or a nursing home system or something that, again, is not necessarily going to make free trade and price limits by trade happen. So this is something that we have been seeing all year. Can the government really do anything about this? This also feels like sort of a lot of, in theory, they can do these things and in practice it’s really hard.

Cohrs: I feel like what we’ve seen in this space — I think my colleague Brittany wrote about kind of this move — is that the corporate structures around these entities are so complicated. Is it going to discourage companies from doing anything by hiring a couple people? Probably not. But I think the people power behind understanding how these structures work can lay the groundwork for future steps on understanding the landscape, understanding the tactics, and what we see, at least on the congressional side, is that a lot of times Congress is working 10 years behind some of the tactics that these companies are using to build market power and influence prices. So I think the more people power, the better, in terms of understanding what the most current tactics are, but it doesn’t seem like this will have significant immediate difference on these practices.

Kenen: I think that the gap between where the government is and where the industry is is so enormous. I think the role of PE [private equity] in health care has grown so fast in a relatively short period of time. Was there a presence before? Yes, but it’s just really taken off. So I think that if those who advocate for greater oversight, if they could just get some transparency, that would be their win, at the moment. They cannot go in and stop private equity. They would like to get to the point where they could curb abuse or set parameters or however you want to phrase it, and different people would phrase it in different ways, but right now they don’t even really know what’s going on. So, even among the Democrats, there was a fight this year about whether to include transparency language between [the House committees on] Energy and Commerce and Ways and Means, and I don’t think that was ever resolved.

I think that’s part of the “Let’s do it in January” mess. But I think they just sort of want not only greater insight for the government, but also for the public: What is going on here and what are its implications? People who criticize private equity — the defenders can always find some examples of companies that are doing good things. They exist. We all know who the two or three companies we hear all the time are, but I think it’s a really enormous black box, and not only is it a black box, but it’s a black box that’s both growing and shifting, and getting into areas that we didn’t anticipate a few years ago, like ophthalmology. We’ve seen some of these studies this year about specialties that we didn’t think of as PE targets. So it’s a big catch-up for roll-up.

Rovner: Yeah, and I think it’s also another place that the administration — and I think the Trump administration tried to do this too. Republicans don’t love some of these things either. The public complains about high health care costs. They’re right; we have ridiculously high health care costs in this country, much higher than in other countries, and this is one of the reasons why, is that there are companies going in who are looking to simply do it to make a profit and they can go in and buy these things up and raise prices. That’s a lot of what we’re seeing and a lot of why people are so frustrated. I think at very least it at least shows them: It’s like, “See, this is what’s happening, and this is one of the reasons why you’re paying so much.”

Kenen: It’s also changing how providers and practitioners work, and how much autonomy they have and who they work for. It’s in an era when we have workforce shortages in some sectors and burnout and dissatisfaction. There are pockets at least, and again, we don’t really know how big, because we don’t have our arms around this, but there are pockets; at least we do know where the PE ownership and how they dictate practice is worsening these issues of burnout and dissatisfaction. I’m having dinner tomorrow night with a expert on health care antitrust, so if we were doing this next week, I would be so much smarter.

Rovner: We will be sure to call on you in January. Workforce burnout: This is another theme that we’ve talked about a lot this year.

Kenen: It’s getting into places you just wouldn’t think. I was talking to a physical therapist the other day and her firm has been bought up, and it’s changing the way she practices and her ability to make decisions and how often she’s allowed to see a patient.

Rovner: Yeah. Well, another continuing theme. Well, yet another big issue this year has been the so-called Medicaid unwinding, as states redetermine eligibility for the first time since the pandemic began. All year, we’ve been hearing stories about people who are still eligible being dropped from the rolls, either mistakenly or because they failed to file paperwork they may never have received. Among the more common mistakes that states are making is cutting off children’s coverage because their parents are no longer eligible, even though children are eligible for coverage up to much higher family incomes than their parents. So even if the parents aren’t eligible anymore, the children most likely are.

This week, the federal government reached out to the nine states that have the highest rates of discontinuing children’s coverage, including some pretty big states, like Texas and Florida, urging them to use shortcuts that could get those children’s insurance back. But this has been a push-and-pull effort all year between the states and the federal government, with the feds trying not to push too hard. At one point, they wouldn’t even tell us which states they were sort of chiding for taking too many people off too fast. And it feels like some of the states don’t really want to have all these people on Medicaid and they would just as soon drop them even if they might be eligible. Is that kind of where we are?

Raman: You can kind of look to see the tea leaves at what some of these states are. The states that the health secretary wrote to, that have 60% of the decline in the kids being disenrolled, align pretty well with the states that have not expanded Medicaid. So they’re already going to have much fewer people enrolled than states where the eligibility levels are a lot more generous. So it’s not surprising, and some of these states have been just a little bit more aggressive from the get-go or said that they wanted to do the eligibility redeterminations a lot faster than some of the other states that wanted to take the longer time, reevaluate different ways to see if someone was still eligible, whether they were maybe getting SNAP [Supplemental Nutrition Assistance Program] benefits or other things like that. So it’s not surprising.

Rovner: You mean do it more carefully.

Raman: Yeah, yeah, so I think that the letter is one step, but if those states are really going to take up implementing these other strategies to kind of decrease that drop-off, unclear, just because they have been pretty proactive about doing this in a quick process.

Rovner: I also noticed that the states that the HHS secretary wrote to kind of tracked with the states that didn’t expand Medicaid under the Affordable Care Act, but interestingly, that meant that there would’ve been fewer parents who were eligible in the first place. So there shouldn’t have been as many children cut off, because there weren’t as many parents who ever got onto Medicaid in those states, which is why it made me raise my eyebrows a little bit. Again, I think this is something that we shall continue to follow going into next year.

Kenen: But we should also point out that even the more pro-Medicaid, liberal states have not done a great job with unwinding. It’s been bumpy pretty much across the board. It’s been very problematic. It’s a clumsy process in a normal year, and trying to catch up on three years’ worth — this is a population where people’s income varies a lot. Are you just over the line? Are you just under the line? It’s fluctuating, the eligibility changes. But you try to do three years at once after all the chaos, with political undercurrents such as the nonexpansion states, and it makes it harder and messier.

Rovner: Which was predicted and came true. So yet another theme from this year is what I’m calling the managed care backlash redux. In the late 1990s, when lots of people were herded into managed care for the first time, there were lots of horror stories about patients being denied care, doctors being put through bureaucratic hoops, unqualified people making medical decisions. There’s a bipartisan bill that almost came to fruition in 2001 for what was called a patient’s bill of rights, but it was pushed off the agenda by 9/11. Most of the protections in that bill, however, were eventually included in the Affordable Care Act.

So now it’s 2023, and lo and behold, those same issues are back. A top issue for the American Medical Association this year is reining in prior authorization requirements, which require doctors to actually get permission before their patients can get recommended care. In one particularly painful story recently, a woman who’d been approved for a lung transplant had her surgery canceled by her insurer, literally on the way to the OR [operating room]. Later, and not coincidentally after a public outcry, the insurer, Cigna, called the whole thing, quote, “An error.” So she did finally get her lung transplant. Joanne, you covered the patient’s bill of rights fight with me back in the day. Most things that are being complained about now are now illegal. So why are we seeing so much of it again?

Kenen: Because there’s confusion about — patients don’t know what their rights are. All of us are savvy and all of us have had something in our own insurance that we don’t understand, or maybe we end up navigating it, but it’s not ever easy. Things like prior authorization — they say, “Well, we have to make sure people are getting appropriate care.” There is an element of truth there; there is overuse in American health care. There are people who get things they don’t really need or should try something less intrusive and less expensive first. So you have this genuine issue of overtreatment, back surgery being the classic example. Many people will do just as well with physical therapy and things like that than they will with an $80,000 operation. In fact, they might do better with the PT and not with the $80,000 operation.

So is there any validity to the idea of making sure people get appropriate care? Yes, but they say no to stuff that they should be covering. That’s clear, and that patients don’t always know what the right pathway is, because doctors also have incentives, or just the way they’re trained and the way they look at their — surgeons like to cut. It’s what they’re trained to do. They trained for years. So it’s really complicated, because there’s this collision between overuse and overtreatment and overcharging and all the over, over, over stuff that comes from the provider world and the no, no, no, no, no, no, no, “you can’t have that” stuff that comes from the insurer world, sometimes appropriately, but often not appropriately.

Rovner: Then I guess you load onto that the private equity and now the providers whose overlords are in it to make a profit. Then you have sort of private equity butting heads with insurance, which is one of the reasons I think we are sort of ending up here. But it certainly does feel very reminiscent of things that I’ve been through before. We’re seeing yet a similar story with Medicare Advantage, which is the private Medicare managed care program that now enrolls more than half of the Medicare population and makes lots of money for its private insurance companies that offer them.

Rachel, your colleagues wrote about a Humana algorithm that was being used to deny care after a patient had received it for, quote-unquote, “an average period of time, regardless of the patient’s condition,” meaning that if patient is sicker than average, they were saying, “Too bad, we’re only going to give this to you for 18 days because that’s what the average patient needs. If you need more, sorry about that.” So Congress is now trying to get into the act, trying to ensure that Medicare patients, who tend to vote in disproportionate numbers, get their needed care. The insurance industry is pushing back against the pushback. What’s the outlook for Congress actually getting something done on this issue? I’ve heard a lot of talk. I haven’t seen a whole lot of action.

Cohrs: Yeah, I mean certainly there has been talk — and just to point out that the Humana lawsuit is related to the UnitedHealth Group lawsuit that we saw earlier; it’s the same company making the algorithm. Bob and Casey’s reporting was just more focused on UnitedHealth Group, because they got internal documents showing the correlation between the quote-unquote “recommendation” of this algorithm and care decisions and denials and people being cut off from their rehab services. So I think certainly, I think there has been a lot of outcry. We’re seeing this play out in the legal system beforehand. This is an issue that we’ve discussed as well.

Are we going to regulate through the courts, because everything else is too slow? I think AI is certainly a hot topic on the Hill at the moment, and there is lawmaker interest, but this is just a very complicated space. Lawmakers, though they might try their best, are not the most tech-savvy people. These are very powerful interests that I would imagine would oppose some of these regulations if they were to actually materialize. So, there’s nothing imminent. Certainly if we see these lawsuits keep piling up, if we see discovery, if we see some more examples of this happening where other companies are using the algorithms as well, a groundswell — as you mentioned, Medicare patients are an important constituency — I think we could see some action, but it’s not looking imminent at this time.

Kenen: The other thing is there’s been a number of reports from a number of media outlets, Stat and others, that these algorithms are being used without any people to work with them. Like, OK, here’s this algorithm and it’s doing these batches of like, I’m going to say no to 50,000 people in 20 seconds. I’m exaggerating a little bit there, but yes, is there legitimate questions about what is appropriate treatment? Yes.

Or you hear these stories about people told, “You can’t have this drug; you have to have that drug at first,” but they would try that drug and it didn’t work for them, and there’s just no way of — the reason we have five or six similar drugs is that in some cases, those slight differences, people respond differently, mental health being a huge example of that, right? Where it could be very hard to get people on the right drugs, if person A doesn’t respond the same way as person B, even if they have the same condition. But 50,000, I don’t know if that’s the right number, but I think I remember reading one where it was 50,000 going through an algorithm. That’s not appropriate use; that’s mass production of saying no to some legitimate needs.

Rovner: Sandhya, I see you nodding there. I know that this is something that’s kind of bipartisan, right? Members of Congress get complaints about Medicare, which is something that they do, members of Congress, oversee. It is a government program, even though these are being run by private companies. I’m sort of wondering when this is going to reach a boiling point that’s going to require something to be done.

Raman: I think with some of these issues that we face that are kind of evergreen here, there has been a bipartisan push to find kind of ways to reform the prior authorization process. We’ve had people as different as Sen. Elizabeth Warren (D-Mass.) and Sen. Mike Crapo (R-Idaho) say they want reform, or Sen. James Lankford (R-Okla.) is very different from Rep. Pramila Jayapal (D-Wash.), and they’ve both said that, similar things that …

Rovner: Some of the most conservative and the most liberal members of Congress.

Raman: Yeah, so we’ve got a broad stretch, but I think at the same time, if you look at some of the other things that we have to deal with here — Congress is out for the year, but for next year, we are fairly behind in that we have a long list of things that need to be extended by mid-January. Then we have just funding all of HHS and a number of other government things by early February. So getting something from start to finish next year, which is also an election year, is going to be tough. So I think that there’s interest there, but I don’t know that getting something hashed out is going to be the easiest next year of all years.

Rovner: Yeah, I think it’s fair to say that Congress took an incomplete in most subjects this year. Well, finally this week, the topic that I think has been in every podcast this year, which is abortion. One of the threads that has wound through this year’s coverage is the strong support for abortion rights from voters, even in red and red-ish states. This year, Ohio voters affirmed a right to abortion, twice actually; there was a technical vote back in the summer. And in Virginia, Democrats flipped the legislature by running against Republican promises to impose a compromise 15-week ban, which apparently did not seem to be a compromise to most of the voters. That was after a half a dozen states voted in favor of the abortion rights position in the 2022 midterms. So this week we have a pair of stories, one from Politico and one from The New York Times, about how anti-abortion forces are working to keep future abortion-related questions off of the ballot in states where there’s still that possibility, including Florida, Missouri, Arizona, and Nevada.

One Republican Missouri lawmaker said that the right to life, quote, “should not be taken away because of a vote by a simple majority,” which frankly felt a little breathtaking to me. He has filed a bill that would require ballot measures to pass not just statewide, but with a majority in more than half of the state’s congressional districts. So basically in the really red parts of the states, a majority there would also have to vote for this. These people are getting very creative in their attempts to stop these votes from happening, maybe because they don’t think they can win them if it’s just straight up or down.

Raman: I think one thing to look at is kind of how we see some of these similar tactics in the same way that we saw with Medicaid. When Medicaid expansion started winning on different ballots, there were states that tried to put in measures to kind of tamp that down, saying, “You need a higher threshold,” and maybe that doesn’t pass, but still putting in different tactics to reduce the likelihood of that passing. I think that’s kind of what we’ve been seeing here, whether or not it’s Ohio trying to change its threshold, or we’ve had states say that even if something passed, let’s try to tear that back so that it doesn’t actually get implemented, or ahead of the ones for next year, let us find tactics to reduce the likelihood they’ll get the signatures to be on the ballot or reduce the likelihood of it passing by changing the language or pushing for challenging the language.

So there’s kind of what we saw right after the Dobbs decision, which was just a very “throw spaghetti at the wall, see what sticks,” just kind of ramp up things and see what will work, given that the last — all of the elections that we’ve had post-Dobbs have been in the favor of abortion rights. Even when we’ve tried to pass an anti-abortion measure, it’s not passed at the ballot. In the stories that you mentioned, there was another quote that stuck out to me, where they’d also mentioned that maybe this should not be subject to majority vote, I think in the Politico piece as well. So I think that’s something that is interesting that I haven’t really seen vocalized before, that this should be done in a different manner rather than this is how the majority of people feel one way or the other.

Rovner: Yeah, it felt so ironic because when in the Dobbs decision, Justice [Samuel] Alito wrote, “Well, now we’re turning this back to the states to be decided by their voters.” Well, here are their voters deciding, and it turns out the anti-abortion side don’t like the way the voters are voting, so they’re going to try to not have the voters vote, basically. We will see how this one all plays out. The other continuing story this year is women being prosecuted basically for bad pregnancy outcomes. Last week we talked about the case of Brittany Watts, an Ohio woman who was sent home from a hospital emergency room twice, had a miscarriage, and this week had formal charges filed against her for, quote, “abusing a corpse.” This case hasn’t gotten nearly the attention of the case of Kate Cox, the Texas woman whose fetus was diagnosed with fatal defects and who filed suit to be allowed to have an abortion.

She eventually had to go to another state, and that was even before the permission that had been granted by a lower-court judge was overturned by the Texas Supreme Court. It may be at least in part because Brittany Watts is black, or that she didn’t put herself out in public the way Kate Cox did, but this is a way that prosecutors can punish women even in states where abortion remains legal. Remember Ohio voted twice this year to keep abortion legal, and this wasn’t even an abortion; it was a miscarriage. The medical examiner determined that the fetus was already dead when it passed. What are the prosecutors trying to do here? We talk about chilling effects. This is kind of the ultimate chilling effect, right?

Raman: It really is, because here we have someone that was not, as you said, seeking an abortion. She miscarried, and I think that she was 21 weeks and five days pregnant, and then they had the 21-week cutoff. So it gets sent into really murky waters here because I’m not sure what they’re going for, kind of picking this case to prosecute and go with. We’ve had this happen before where people have self-managed or miscarried, and then they’ve ended up being prosecuted. But at this point, I’m not sure why they’re making a case out of this particular woman, kind of dragging this into the debate.

Rovner: Yeah, there was a famous case in Indiana — 2013, may have been even before that — a pregnant woman who tried to kill herself and failed to kill herself, but did kill her fetus, and she was put in jail for several years. There have been, at least there was sort of the question there, were you trying to self-abort at that point? But there was nothing here. This was a woman with a wanted pregnancy whose pregnancy ended via natural circumstances, which happens, I think we’ve discovered now, a lot more than people realize.

I think people don’t talk about unhappy pregnancy outcomes, so people don’t realize how common they actually are. But I wonder — and I’ve been saying this all year — again, if women are fearing prosecution, even women who want babies, they may fear getting pregnant. I’ve seen some stories about more permanent types of birth control happening because women don’t want to get pregnant, because they don’t want to end up in a place where their health is being risked or they’re trying to get health care they need and their doctor or they could be facing prison time.

Kenen: And in this case, she had gone to the hospital. It’s complicated. She went in and out of the hospital. She went to the ER; they sent her home. I think then once they sent her home another time, she left against medical advice, but she wasn’t trying to get an abortion. She was having pregnancy complications. It’s documented. She was in and out of medical care. Pregnancies can fail, and early, the first trimester, it’s a very high rate. It’s less common later on, but it still happens. There are times when an early miscarriage, you might not even know that it’s a miscarriage. It’s early. You don’t know what’s even going on with your own body, or you’re not certain. So she didn’t know what to do at home when she did miscarry. It seems very punitive. Did she behave in an absolutely ideal, textbook-perfect, the way you wish she might have? But she did what she could do at the time.

Rovner: Yeah, it’s hard to know what to do. Well, we will watch this case, I think, even though it’s not, as I say, it’s not getting quite the attention of some of the other cases. Our final this week in health information of 2023 goes to an ad that came to my email from the All Family Pharmacy in Boca Raton, Florida. The headline is “Miracle Drug Ivermectin for Covid-19 Could Save Lives,” and it claims that, quote, “a growing body of evidence from dozens of studies worldwide demonstrates ivermectin’s unique and highly potent ability to inhibit SARS-CoV-2 replication and aid in the recovery from covid-19.”

That sounded not quite right to me, so I looked up some of the studies that they cited and found that most had been thoroughly debunked, that ivermectin is not really good treatment for covid-19. I even found one study from an open-access journal that had to publish a correction, noting that two of its authors were paid consultants to ivermectin manufacturers, though they had failed to disclose that conflict. Meanwhile, if you don’t want ivermectin or hydroxychloroquine, which the All Family Pharmacy also sells, they will also sell you semaglutide, which is the scientific name of the hard-to-get weight loss drug Ozempic. And they say their price even includes a doctor consult. I will post the links in the show notes. All right, that is this week’s news. Now we will play my interview with Jordan Rau about his long-term care financing series. Then we’ll come back with our extra credits.

I am pleased to welcome to the podcast my KFF Health News colleague Jordan Rau. I asked Jordan to join us to talk about his latest project, “Dying Broke,” done in partnership with The New York Times. It’s about the growing expense of long-term care and the declining ability of Americans to pay for it. Jordan, welcome to “What the Health?”

Jordan Rau: Glad to be here, Julie.

Rovner: So I want you to start with the 30-second elevator pitch about what you found working on this, for two years?

Rau: Just about. The big-picture view is that when you’re elderly, if you need long-term care, by which we’re talking about nonmedical things, like personal aides, if you need help in your daily activities going to the bathroom or eating or such, or if you have a cognitive impairment like dementia, it’s exceedingly expensive, except if you are destitute. The private market solutions, which are long-term care insurance, really don’t work, and most people don’t hold it. The government solution, which is Medicaid, is only available to you once you’ve exhausted just about all of your assets and have very low income. And that’s led the vast majority of people out on their own financially to either rely on themselves or their family or other people to take up the burden. And that burden is significant for the children of older people.

Rovner: So it’s not just nursing home care that costs more than all but the richest can afford; assisted living and home care, which people assume are going to be a lot cheaper and that maybe their retirement savings will cover — they’re also increasingly out of reach. Why has the price of long-term care gone up so much faster than Americans’ retirement savings?

Rau: All of medical inflation has gone up enormously, but I think a lot of it is that there’s so little regulation on prices. There’s frankly no regulation on prices of assisted living, and you don’t have a large payer that can control prices. That’s one of the good things about Medicare, is that they set their own prices and that’s helped keep prices down. That’s why it’s less expensive for Medicare to send someone to a nursing home than for someone to pay out-of-pocket. But there’s none of that. So the prices have just gone where they’ve gone, and now you have a scarcity of workers as well. So that’s driving up wages.

Rovner: People who’ve been socking away money and thinking they’re going to be able to pay for this themselves get kind of a rude awakening when they need, and it’s not — as you say, it’s not even medical long-term care; it’s just help with activities of daily living.

Rau: Yeah, yeah, yeah. I think one of the problems is that people assume they have the best-case scenario when they’re envisioning their retirement. They’re going to be off golfing, they’re going to be playing around with their grandkids, they’re going to be taking trips. The fact is, you’re very likely — if you live well into your 80s and 90s, as many people do — to not be able to live independently anymore, to need help with at least a little bit of things, and in worst-case scenario everything. People just don’t expect that that’s going to happen.

Rovner: So why do so many Americans still not know that Medicare doesn’t pay for long-term care? I feel like I’ve been saying this since 1980-something.

Rau: I wonder how much of it would’ve been different if they had decided to name Medicaid something that isn’t so close to Medicare. Maybe that would’ve helped, but realistically, everyone I think has a sense. Well, first of all, who’s paying attention to this stuff when you’re in your 30s and 40s, right? You’re not thinking about what’s going to happen to you in the 60s. And then I think that people just don’t expect that this is going to happen to them, and Medicare has a well-earned reputation as being pretty comprehensive. It doesn’t cover certain things, and there is a “donut hole” situation, so you’ve got to get supplemental. But people know that for the most part, it’s covered. And people don’t understand that long-term care, the nonmedical side, is — not just here, everywhere — it’s the backwater of health care. It’s not even considered health care in some ways.

So you just assume — I mean, I would assume, right, if Medicare is going to cover my heart transplant, why would I not think that it’s going to cover someone to come to my house a couple hours a day to help me with stuff or to put me in an assisted living facility if it covers nursing home care? It’s such a complicated, Byzantine system. You and I, we’ve been doing this probably combined, well, I don’t want to say how long, but it’s been a long time, and it’s hard for us to untangle exactly what is covered and what overlaps with what and what are the eligibility rules. So to expect a regular person, who isn’t paid to do this 50 hours a week, to know it is highly unrealistic.

Rovner: Yeah, and I was going to say the fact that Medicare actually has a home care benefit and it has a nursing home benefit; they’re just super limited. I think that sort of adds to the confusion too, doesn’t it?

Rau: Yeah. Well, even Medicare is confused about its home care benefit, right? There’s the whole Jimmo case and a whole debate about what you need to qualify for it.

Rovner: So listeners will know that long-term care and our country’s complete lack of a long-term care policy is a pet issue of mine and has been since I started writing about it in 1986. It isn’t like the government hasn’t tried to do something. There was the ill-fated Medicare Catastrophic Coverage Act in 1988 that ended up getting repealed. There were efforts to subsidize private long-term care insurance in the 1990s that didn’t really go anywhere, and there was the CLASS [Community Living Assistance Services and Supports] Act that was briefly part of the Affordable Care Act when it passed in 2010, only to be abandoned as financially unfeasible. Why has this been such a hard issue to address from a policy point of view?

Rau: The one-word answer obviously is money. It’s incredibly expensive. So to have that type of lift, it would be to expand either Medicaid or Medicare or to create a new program; would be inordinately expensive. But beyond that, I think basically, to do this, you either have to tag on something to one of those existing programs, which is a major expansion, or you have to have a mandatory insurance program. It could be a public one; it can be a private one. I think that it’s hard because it’s not universal. Auto insurance — everybody drives, right? So if you say, OK, you all know you’re going to drive, and people know like, Oh, I may get into an accident. So then you have a functioning insurance market.

Health insurance, sort of the same thing. Everyone knows that they’re going to need health insurance maybe next year. So that’s an easier sell. Even that, right, with the Affordable Care Act — that passed by just one vote. That was a heavy lift. So here you’re saying, here’s something that you may need but you very well may never tap. By the way, we want you to pay for it now or buy into it now, and it’s not relevant for your life until 30 years. I just think that’s a hard sell politically to the population, to the political system. It’s a hard sell.

Rovner: So if there was just one message that you hope people take away after reading this exhaustive series, what do you think it should be?

Rau: Printing the series out and frame it and put it on your wall would be my main message. But I would say that this stuff is so unpredictable that you really have to have some flexibility in your expectations and planning, because you can’t plan to not get early-onset dementia. You can’t plan to need help. So I think that you need to — people obviously need to have as much of a cash cushion as they can, and they need to bone up on this before it’s a crisis, because by the time it’s a crisis — and this is a problem, right, with health insurance too. By the time you’ve got the emotional and health issues, to throw on top of it a bureaucratic sort of financial issue is just so hard for most people to juggle. So there isn’t an easy solution, but it is important for people to realize that this is as much of a risk as smashing your car into a telephone pole and that you cannot have one answer.

Your answer cannot be like, “Oh, well I’m just going to stay in my house, because you may not be able to stay in your house.” Or your answer can’t be, “Well, I’m going to go into a fancy assisted living facility with a great chandelier and great food,” because unless you save an inordinate amount of money, even if you go in there, you may not be able to afford to stay there. So it’s really a recognition that you can’t really concretely plan for this, but you may very well not be able to live independently if you are lucky enough to live into your eighth and ninth decade.

Rovner: Great. Jordan Rau, anything I didn’t ask?

Rau: Never. Never, Julie.

Rovner: Jordan Rau, thank you so much for joining us.

Rau: Great to see you.

Rovner: OK. We are back, and it’s time for our last extra credit segment of the year. 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. Rachel, why don’t you go first this week?

Cohrs: Sure. The story I chose is in ProPublica. The headline is “Doctors With Histories of Big Malpractice Settlements Work for Insurers, Deciding If They’ll Pay for Care,” by Patrick Rucker at The Capitol Forum and David Armstrong and Doris Burke at ProPublica. I think this article very much fits into the larger theme we were talking about earlier about insurance denials. This was pretty shocking still to me, of these instances of doctors with big malpractice settlements that had been disciplined by medical boards failing up essentially and getting jobs. If they can’t practice anymore, then they’re getting jobs in insurance companies instead, deciding whether a much larger volume of patients get care. So I think it was just a fascinating, really well-done investigation. It sounded like it was really difficult to match up all the records with the lawsuits and the settlements, and there aren’t necessarily databases that exist of what doctors work for insurance companies. So it was just really well done and just a really important space that we’ll continue to talk about.

Kenen: That was a great piece. These doctors are making $300,000 to $400,000 a year, these people who failed up, as Rachel just put it. Yeah.

Rovner: Yeah. That’s the perfect phrase. Sandhya.

Raman: My extra credit this week is called “Mississippi Community Workers Battle Maternal Mortality Crisis,” and it’s from my colleague at Roll Call Lauren Clason. This story also illustrates a combination of themes from this year. It touches on some of the maternal health inequities, the racial inequities, and rural health inequities, and how politics kind of comes into all of that. Mississippi Black women die at a rate four times higher than white women, and the state also leads in infant mortality rates nationwide. At the same time, it’s also a nonexpansion state for Medicaid. So Lauren went to Mississippi to look at some of the community and state-led groups that are trying to reduce these inequities that are caused by the different racial, socioeconomic, and access factors that are happening at the same time that an increasing number of hospitals are closing in the state.

Rovner: Also another really good story. Joanne?

Kenen: The theme of the day is yearlong, or decades-long in some cases, but ongoing health stories that have dominated the year. Another one that we didn’t touch on today but clearly is an ongoing multiyear health crisis is gun violence, which is a public health problem as well as a criminal justice problem. The Trace did a fantastic end-of-year project by Justin Agrelo. It’s called “Chicago Shooting Survivors, in Their Own Words.” They worked with both people who had survived shootings as well as people who had lost family members to shootings, and they worked with them about how to write and tell stories.

These five stories are in these people’s own words, and it was partnered with a bunch of other Chicago-based publications. They’re very powerful. In the introduction, they wrote that the Chicago media has been really good about trying to cover every homicide but that these people end up being defined by their death, not everything else about their life. These essays, they didn’t just talk about grief, which is obviously a huge — grief and trauma — but also the lives, not just the deaths. It’s really, really worth spending some time with.

Rovner: Yeah, and we haven’t talked as much as we probably should have about gun violence, but we will put that on the list for 2024. My extra credit this week is from Business Insider. It’s called “I Feel Conned Into Keeping This Baby.” It’s by Bethany Dawson, Louise Ridley, and Sarah Posner. It’s about an anti-abortion group that promised pregnant women financial support for their babies if they agreed not to get an abortion. But even though the women signed contracts, the group, called Let Them Live, did not provide the aid promised. Apparently they promised more money than they could raise in contributions. Now, I have heard of pregnancy crisis centers promising things like diapers and formula, but this group said it would help with groceries and rent and other significant expenses until it didn’t. Apparently the small print in the contract said the benefits could be reduced or stopped at any time. This was supposed to help answer the criticism that anti-abortion groups don’t actually care about the women, particularly after they give birth, except maybe promising things that you can’t deliver isn’t the best way to do that.

OK. That is our show for this week and for this year. 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, as always, to our technical guru, Francis Ying, and our editor, Emmarie Huetteman. Also as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can still find me at X, @jrovner, or @julierovner at Bluesky and @julie.rovner at Threads. Sandhya, where are you on social media these days?

Raman: I’m @SandhyaWrites on both X and Bluesky.

Rovner: Rachel.

Cohrs: I’m @rachelcohrs on X, @rachelcohrsreporter on Threads.

Rovner: Joanne.

Kenen: @joannekenen1 on Threads. I’m occasionally on X — or, as you all know, I’ve been calling it Y — @JoanneKenen.

Rovner: We will be back in your feed in 2024. Until then, have a great holiday season, and be healthy.

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SAN DIEGO — Erinn Maury knew Remicade wasn’t the right drug for Patti Schulte, a rheumatoid arthritis patient the physician saw at her Millersville, Maryland, practice. Schulte’s swollen, painful joints hadn’t responded to Enbrel or Humira, two drugs in the same class.

But the insurer insisted, so Schulte went on Remicade. It didn’t work either.

What’s more, Schulte suffered a severe allergic reaction to the infusion therapy, requiring a heavy dose of prednisone, a steroid with grave side effects if used at high doses for too long.

After 18 months, her insurer finally approved Maury’s drug of choice, Orencia. By then, Schulte’s vertebrae, weakened by prednisone, had started cracking. She was only 60.

Schulte’s story of pain, drug-hopping, and insurance meddling is all too common among patients with rheumatoid arthritis, who often cycle agonizingly through half a dozen drugs in search of one that provides a measure of relief. It’s also a story of how doctors are steered by pharmacy benefit managers — the middlemen of the drug market — as well as by insurers.

Once people with inflammatory conditions such as rheumatoid arthritis reach a certain stage, the first prescription offered is typically Humira, the best-selling drug in history, and part of a class known as tumor necrosis factor inhibitors, or TNFis, which fail to significantly help about half of the patients who take it.

“We practice rheumatology without any help,” said Vibeke Strand, a rheumatologist and adjunct clinical professor at Stanford. She bemoaned the lack of tools available to choose the right drug while bristling at corporate intervention in the decision. “We are told by the insurer what to prescribe to the patient. After they fail methotrexate, it’s a TNF inhibitor, almost always Humira. And that’s not OK.”

If there’s a shred of hope in this story, it’s that a blood test, PrismRA, may herald an era of improved care for patients with rheumatoid arthritis and other autoimmune conditions. But first, it must be embraced by insurers.

PrismRA employs a predictive model that combines clinical factors, blood tests, and 19 gene patterns to identify the roughly 60% of patients who are very unlikely to respond to a TNFi drug.

Over the past 25 years, drug companies have introduced five new classes of autoimmune drugs. TNFis were the first to market, starting in the late 1990s.

Some 1.3 million Americans have rheumatoid arthritis, a disease in which a person’s immune system attacks their joints, causing crippling pain and, if improperly treated, disfigurement. The newer drugs, mostly so-called biologics, are also used by some of the 25 million or more Americans with other autoimmune diseases, such as lupus, Crohn’s disease, and psoriasis. Typically costing tens of thousands of dollars annually, the drugs are prescribed after a patient fails to respond to older, cheaper drugs like methotrexate.

Until recently, rheumatologists have had few ways to predict which of the new drugs would work best on which patients. Often, “it’s a coin flip whether I prescribe drug A or B,” said Jeffrey Curtis, a rheumatology professor at the University of Alabama-Birmingham.

Yet about 90% of the patients who are given one of these advanced drugs start on a TNFi, although there’s often no reason to think a TNFi will work better than another type.

Under these puzzling circumstances, it’s often the insurer rather than the doctor who chooses the patient’s drug. Insurers lean toward TNFis such as adalimumab, commonly sold as brand-name Humira, in part because they get large rebates from manufacturers for using them. Although the size of such payments is a trade secret, AbbVie is said to be offering rebates to insurers of up to 60% of Humira’s price. That has enabled it to control 98.5% of the U.S. adalimumab market, even though it has eight biosimilar competitors.

PrismRA’s developer, Scipher Medicine, has provided more than 26,000 test results, rarely covered by insurance. But on Oct. 15, the Centers for Medicare & Medicaid began reimbursing for the test, and its use is expected to rise. At least two other companies are developing drug-matching tests for rheumatoid arthritis patients.

Although critics say PrismRA is not always useful, it is likely to be the first in a series of diagnostics anticipated over the next decade that could reduce the time that autoimmune disease patients suffer on the wrong drug.

Academics, small biotechs, and large pharmaceutical companies are investing in methods to distinguish the biological pathways involved in these diseases, and the best way to treat each one. This approach, called precision medicine, has existed for years in cancer medicine, in which it’s routine to test the genetics of patients’ tumors to determine the appropriate drug treatment.

“You wouldn’t give Herceptin to a breast cancer patient without knowing whether her tumor was HER2-positive,” said Costantino Pitzalis, a rheumatology professor at the William Harvey Research Institute in London. He was speaking before a well-attended session at an American College of Rheumatology conference in San Diego in November. “Why do we not use biopsies or seek molecular markers in rheumatoid arthritis?”

It’s not only patients and doctors who have a stake in which drugs work best for a given person.

When Remicade failed and Schulte waited for the insurer to approve Orencia, she insisted on keeping her job as an accountant. But as her prednisone-related spinal problems worsened, Schulte was forced to retire, go on Medicaid, and seek disability, something she had always sworn to avoid.

Now taxpayers, rather than the insurer, are covering Schulte’s medical bills, Maury noted.

Precision medicine hasn’t seemed like a priority for large makers of autoimmune drugs, which presumably have some knowledge of which patients are most likely to benefit from their drugs, since they have tested and sold millions of doses over the years. By offering rebate incentives to insurers, companies like AbbVie, which makes Humira, can guarantee theirs are the drugs of choice with insurers.

“If you were AbbVie,” Curtis said, “why would you ever want to publish data showing who’s not going to do well on your drug, if, in the absence of the test, everyone will start with your drug first?”

What Testing Could Do

Medicare and commercial insurers haven’t yet set a price for PrismRA, but it could save insurers thousands of dollars a year for each patient it helps, according to Krishna Patel, Scipher’s associate director of medical affairs.

“If the test cost $750, I still only need it once, and it costs less than a month of whatever drug is not going to work very well for you,” said Curtis, a co-author of some studies of the test. “The economics of a biomarker that’s anything but worthless is pretty favorable because our biologics and targeted drugs are so expensive.”

Patients are enthusiastic about the test because so many have had to take TNFis that didn’t work. Many insurers require patients to try a second TNFi, and sometimes a third.

Jen Weaver, a patient advocate and mother of three, got little benefit from hydroxychloroquine, sulfasalazine, methotrexate, and Orencia, a non-TNFi biologic therapy, before finding some relief in another, Actemra. But she was taken off that drug when her white blood cells plunged, and the next three drugs she tried — all TNFis — caused allergic reactions, culminating with an outbreak of pus-filled sores. Another drug, Otezla, eventually seemed to help heal the sores, and she’s been stable on it since in combination with methotrexate, Weaver said.

“What is needed is to substantially shorten this trial-and-error period for patients,” said Shilpa Venkatachalam, herself a patient and the director of research operations at the Global Healthy Living Foundation. “There’s a lot of anxiety and frustration, weeks in pain wondering whether a drug is going to work for you and what to do if it doesn’t.” A survey by her group found that 91% of patients worried their medications would stop working. And there is evidence that the longer it takes to resolve arthritis symptoms, the less chance they will ever stop.

How insurers will respond to the availability of tests isn’t clear, partly because the arrival of new biosimilar drugs — essentially generic versions — are making TNFis cheaper for insurance plans. While Humira still dominates, AbbVie has increased rebates to insurers, in effect lowering its cost. Lower prices make the PrismRA test less appealing to insurers, since widespread use of the test could cut TNFi prescriptions by up to a third.

However, rheumatologist John Boone in Louisville, Kentucky, found to his surprise that insurers mostly accepted alternative prescriptions for 41 patients whom the test showed unlikely to respond to TNFis as part of a clinical trial. Boone receives consulting fees from Scipher.

Although the test didn’t guarantee good outcomes, he said, the few patients given TNFis despite the test results almost all did poorly on that regimen.

Scientists from AbbVie, which makes several rheumatology drugs in addition to Humira, presented a study at the San Diego conference examining biomarkers that might show which patients would respond to Rinvoq, a new immune-suppressing drug in a class known as the JAK inhibitors. When asked about its use of precision medicine, AbbVie declined to comment.

Over two decades, Humira has been a blockbuster drug for AbbVie. The company sold more than $3.5 billion worth of Humira in the third quarter of 2023, 36% less than a year ago. Sales of Rinvoq, which AbbVie is marketing as a treatment for patients failed by Humira and its class, jumped 60% to $1.1 billion.

What Patients Want

Shannan O’Hara-Levi, a 38-year-old in Monroe, New York, has been on scores of drugs and supplements since being diagnosed with juvenile arthritis at age 3. She’s been nauseated, fatigued, and short of breath and has suffered allergic reactions, but she says the worst part of it was finding a drug that worked and then losing access because of insurance. This happened shortly after she gave birth to a daughter in 2022, and then endured intense joint pain.

“If I could take a blood test that tells me not to waste months or years of my life — absolutely,” she said. “If I could have started my current drug last fall and saved many months of not being able to engage with my baby on the floor — absolutely.”

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The House voted Dec. 11, 320-71, for legislation that would require the PBMs to change some of the ways they do business. The big three — CVS Health, Express Scripts, and OptumRx — have all announced their own reform measures in recent months. 

The bill looks unlikely to pass the Senate, though some of its provisions might eventually become law. Meanwhile, some of the most baffling contradictions of PBM drug pricing are coming to a head. 

Take AbbVie’s Humira, the highest-earning drug ever. Eight biosimilars — what ordinary people would call generics — came onto the market this year, raising hopes of big savings for patients and insurers. Some cost as little as $995 a month, compared to Humira’s wholesale price of $6,992.  

The Pharmaceutical Care Management Association, which represents the big PBMs, told KFF Health News in a statement that its members are pushing to use more of the biosimilars. Why then, asks Juliana Reed, CEO of the Biosimilars Forum trade group, did Humira account for 98.5 percent of all sales of the drug and its biosimilars as recently as November?

I’ve been told that AbbVie has threatened to withhold rebates it pays PBMs for some of its other medicines unless they give Humira good placement on formularies, the all-important lists of drugs available to their customers. The PBMs say their formularies provide the best deal for employers, but these are “assertions impossible to verify,” says James Gelfand, president and CEO of The ERISA Industry Committee, which represents large employers.

The PBMs’ strategy is purposefully obscure. Negotiations with drugmakers constitute their special sauce and they aren’t sharing the ingredients. But given that it costs up to $300 million to develop a biosimilar, the Humira battle is key to the future of biosimilars in general, and to more competition to lower expensive drug prices.

“If you can’t break into anti-inflammatory drugs it will be hard to break into any model,” Gelfand said. “It’s the weather vane, the shape of things to come.”

There’s more weird stuff going on with biosimilars. To get Inflectra, its biosimilar to Johnson & Johnson’s blockbuster Remicade, onto formularies, Pfizer pays large rebates to insurers, I’ve been told.

That’s driven down average net prices for Inflectra as well as other versions of the drug. 

Good, right? Not according to rheumatologists, the doctors who typically administer these complicated, infused drugs in their offices.

The doctors say they still have to pay much higher prices to obtain Inflectra from distributors. But their reimbursement from Medicare is reduced because of the rebates, they say. Several rheumatologists told me that the way the math works out — or rather, doesn’t — they could lose as much as $20,000 a year on each patient. 

The choice is “lose money, or divert the patient to a hospital infusion center,” said Chris Phillips, a doctor in Paducah, Ky., who chairs the American College of Rheumatology’s insurance subcommittee. The latter is “more expensive and usually not as good an experience for the patient.”

Payment imbalances also have developed for Amgen’s Avsola, another Remicade biosimilar, and for biosimilar forms of Genentech’s Rituxan, a cancer drug also infused to treat autoimmune conditions, rheumatologists say.

“The whole point of biosimilars is to make these drugs more accessible, but they’re becoming unaffordable,” said Madelaine Feldman, immediate past president of the Coalition of State Rheumatology Organizations. 

Spokespeople for Pfizer and for the Pharmaceutical Care Management Association acknowledged the rheumatologists’ dilemma. Each said it was up to the other to resolve the problem.

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In September 2022, Elyse Greenblatt of Queens returned home from a trip to Rwanda with a rather unwelcome-back gift: persistent congestion.

She felt a pain in her sinuses and sought a quick resolution.

Covid-19 couldn’t be ruled out, so rather than risk passing on an unknown infection to others in a waiting room, the New Yorker booked a telehealth visit through her usual health system, Mount Sinai — a perennial on best-hospitals lists.

That proved an expensive decision. She remembers the visit as taking barely any time. The doctor decided it was likely a sinus infection, not covid, and prescribed her fluticasone, a nasal spray that relieves congestion, and an antibiotic, Keflex. (The Centers for Disease Control and Prevention says antibiotics “are not needed for many sinus infections, but your doctor can decide if you need” one.)

Then the bill came.

The Patient: Elyse Greenblatt, now 38, had insurance coverage through Empire BlueCross BlueShield, a New York-based insurer.

Medical Services: A telehealth urgent care visit through Mount Sinai’s personal record app. Greenblatt was connected with an urgent care doctor through the luck of the draw. She was diagnosed with sinusitis, prescribed an antibiotic and Flonase, and told to come back if there was no improvement.

All this meant a big bill. The insurer said the telehealth visit was deemed an out-of-network service — a charge Greenblatt said the digital service didn’t do a great job of warning her about. It came as a surprise. “In my mind, if all my doctors are ‘in-insurance,’ why would they pair me with someone who was ‘out-of-insurance’?” she asked. And the hospital system tried its best to make contesting the charge difficult, she said.

Service Provider: The doctor was affiliated with Mount Sinai’s health system, though where the bill came from was unclear: Was it from one of the system’s hospitals or another unit?

Total Bill: $660 for what was billed as a 45- to 59-minute visit. The insurer paid nothing, ruling it out of network.

What Gives: The bill was puzzling on multiple levels. Most notably: How could this be an out-of-network service? Generally, urgent care visits delivered via video are a competitive part of the health care economy, and they’re not typically terribly expensive.

Mount Sinai’s telehealth booking process is at pains to assure bookers they’re getting a low price. After receiving the bill, Greenblatt went back to the app to recreate her steps — and she took a screenshot of one particular part of the app: the details. She got an estimated wait time of 10 minutes, for a cost of $60. “Cost may be less based on insurance,” the app said; this information, Mount Sinai spokesperson Lucia Lee said, is “for the patient’s benefit,” and the “cost may differ depending on the patient’s insurance.”

A $60 fee would be in line with, if not a bit cheaper than, many other telehealth services. Doctor on Demand, for example, offers visits from a clinician for $79 for a 15-minute visit, assuming the customer’s insurance doesn’t cover it. Amazon’s new clinic service, offering telehealth care for a wide range of conditions, advertises that charges start at $30 for a sinus infection.

The Health Care Cost Institute, an organization that analyzes health care claims data, told KFF Health News its data shows an urgent care telehealth visit runs, on average, $120 in total costs — but only $14 in out-of-pocket charges.

So how did this visit end up costing astronomically so much more than the average? After all, one of the selling points of telemedicine is not only convenience but cost savings.

First, there was the length of the visit. The doctor’s bill described it as moderately lengthy. But Greenblatt recalled the visit as simple and straightforward; she described her symptoms and got an antibiotic prescription — not a moderately complex visit requiring the better part of an hour to resolve.

The choice of description is a somewhat wonky part of health care billing that plays a big part in how expensive care can get. The more complex the case, and the longer it takes to diagnose and treat, the more providers can charge patients and insurers.

Greenblatt’s doctor billed her at a moderate level of care — curious, given her memory of the visit as quick, almost perfunctory. “I think it was five minutes,” she recalled. “I said it was a sinus infection; she told me I was right. ‘Take some meds, you’ll be fine.’”

Ishani Ganguli, a doctor at Brigham and Women’s Hospital in Boston who studies telehealth, said she didn’t know the exact circumstances of care but was “a bit surprised that it was not billed at a lower level” if it was indeed a quick visit.

That leaves the out-of-network aspect of the bill, allowing the insurer to pay nothing for the care. (Stephanie DuBois, a spokesperson for Empire BlueCross BlueShield, Greenblatt’s insurer, said the payer covers virtual visits through two services, or through in-network doctors. The Mount Sinai doctor fit neither criteria.) Still, why did Mount Sinai, Greenblatt’s usual health care system, assign her an out-of-network doctor?

“If one gets their care from the Mount Sinai system and the care is within network, I don’t think it is reasonable for the patients to expect or understand that one of the Mount Sinai clinicians is suddenly going to be out of network,” said Ateev Mehrotra, a hospitalist and telehealth researcher at Beth Israel Deaconess Medical Center.

It struck the doctors specializing in telehealth research whom KFF Health News consulted as an unusual situation, especially since the doctor who provided the care was employed by the prestigious health system.

The doctor in question may have been in network for no insurers whatsoever: A review of the doctor’s Mount Sinai profile page — archived in November 2022 — does not list any accepted insurance. (That’s in contrast to other doctors in the system.)

Lee, Mount Sinai’s spokesperson, said the doctor did take at least some insurance. When asked about the doctor’s webpage not showing any accepted plans, she responded the site “instructs patients to contact her office for the most up-to-date information.”

Attempting to solve this billing puzzle turned into a major league headache for Greenblatt. Deepening the mystery: After calling Mount Sinai’s billing department, she was told the case had been routed to disputes and marked as “urgent.”

But the doctor’s office would seemingly not respond. “In most other professions, you can’t just ignore a message for a year,” she observed.

The bill would disappear on her patient portal, then come back again. Another call revealed a new twist: She was told by a staffer that she’d signed a form consenting to the out-of-network charge. But “when I asked to get a copy of the form I signed, she asked if she could fax it,” Greenblatt said. Greenblatt said no. The billing department then asked whether they could put the form in her patient portal, for which Greenblatt gave permission. No form materialized.

When KFF Health News asked Mount Sinai about the case in mid-October of this year, Lee, the system’s spokesperson, forwarded a copy of the three-page form — which Greenblatt didn’t remember signing. Lee said the forms are presented as part of the flow of the check-in process and “intended to be obvious to the patient as required by law.” Lee said on average, a patient signs two to four forms before checking into the visit.

But, according to the time stamp on the forms, Greenblatt’s visit concluded before she signed. Lee said it is “not standard” to sign forms after the visit has concluded, and said that once informed, patients “may contact the office and reschedule with an ‘in-network provider.’”

“If it was provided after the service was rendered, that is an exception and situational,” she concluded.

The business with the forms — their timing and their obviousness — is potentially a vital distinction. In December 2020, Congress enacted the No Surprises Act, designed to crack down on so-called surprise medical bills that arise when patients think their care is covered by insurance but actually isn’t. Allie Shalom, a lawyer with Foley & Lardner, said the law requires notice to be given to patients, and consent obtained in advance.

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More from the Series

But the legislation provides an exception. It applies only to hospitals, hospital outpatient facilities, critical access hospitals, and ambulatory surgery centers. Greenblatt’s medical bill variously presents her visit as “Office/Outpatient” or “Episodic Telehealth,” making it hard to “tell the exact entity that provided the services,” Shalom said.

That, in turn, makes its status under the No Surprises Act unclear. The rules apply when an out-of-network provider charges a patient for care received at an in-network facility. But Shalom couldn’t be sure what entity charged Greenblatt, and, therefore, whether that entity was in network.

As for Mount Sinai, Lee said asking for consent post-visit does not comply with the No Surprises Act, though she said the system needed more time to research whether Greenblatt was billed by the hospital or another entity.

The Resolution: Greenblatt’s bill is unpaid and unresolved.

The Takeaway: Unfortunately, patients need to be on guard to protect their wallets.

If you want to be a smart shopper, consider timing the length of your visit. The “Bill of the Month” team regularly receives submissions from patients who were billed for a visit significantly longer than what took place. You shouldn’t, for example, be charged for time sitting in a virtual waiting room.

Most important, even when you seek care at an in-network hospital, whose doctors are typically in network, always ask if a particular physician you’ve not seen before is in your network. Many practices and hospitals offer providers in both categories (even if that logically feels unfair to patients). Providers are supposed to inform you that the care being rendered is out of network. But that “informed consent” is often buried in a pile of consent forms that you auto-sign, in rapid fire. And the language is often a blanket statement, such as “I understand that some of my care may be provided by caregivers not in my insurance network” or “I agree to pay for services not covered by my insurance.”

To a patient trying to quickly book care, that may not feel like “informed consent” at all.

“It’s problematic to expect patients to read the fine print, especially when they feel unwell,” Ganguli said.

Emily Siner reported the audio story.

Bill of the Month is a crowdsourced investigation by KFF Health News and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!

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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Thousands of readers reacted to the articles in the “Dying Broke” series about the financial burden of long-term care in the United States. They offered their assessments for the government and market failures that have drained the lifetime savings of so many American families. And some offered possible solutions.

In more than 4,200 comments, readers shared their struggles in caring for spouses, older parents, and grandparents. They expressed anxieties about getting older themselves and needing help to stay at home or in institutions like nursing homes or assisted living facilities.

Many suggested changes to U.S. policy, like expanding the government’s payments for care and allowing more immigrants to stay in the country to help meet the demand for workers. Some even said they would rather end their lives than become a financial burden to their children.

Many readers blamed the predominantly for-profit nature of American medicine and the long-term care industry for depleting the financial resources of older people, leaving the federal-state Medicaid programs to take care of them once they were destitute.

“It is incorrect to say the money isn’t there to pay for elder care,” Jim Castrone, 72, a retired financial controller in Placitas, New Mexico, commented. “It’s there, in the form of profits that accrue to the owners of these facilities.”

“It is a system of wealth transference from the middle class and the poor to the owners of for-profit medical care, including hospitals and the long-term care facilities outlined in this article, underwritten by the government,” he added.

Other readers pointed to insurance policies that, despite limitations, had helped them pay for services. And some relayed their concerns that Americans were not saving enough and were unprepared to take care of themselves as they aged.

What Other Nations Provide

Other countries’ treatment of their older citizens was repeatedly mentioned. Readers contrasted the care they observed older people receiving in foreign countries with the treatment in the United States, which spends less on long-term care as a portion of its gross domestic product than do most wealthy nations.

Marsha Moyer, 75, a retired teaching assistant in Memphis, Tennessee, said she spent 12 years as a caregiver for her parents in San Diego County and an additional six for her husband. While they had advantages many don’t, Moyer said, “it was a long, lonely job, a sad job, an uphill climb.”

By contrast, her sister-in-law’s mother lived to 103 in a “fully funded, lovely elder care home” in Denmark during her last five years. “My sister-in-law didn’t have to choose between her own life, her career, and helping her healthy but very old mother,” Moyer said. “She could have both. I had to choose.”

Birgit Rosenberg, 58, a software developer in Southampton, Pennsylvania, said her mother had end-stage dementia and had been in a nursing home in Germany for more than two years. “The cost for her absolutely excellent care in a cheerful, clean facility is her pittance of Social Security, about $180 a month,” she said. “A friend recently had to put her mother into a nursing home here in the U.S. Twice, when visiting, she has found her mother on the floor in her room, where she had been for who knows how long.”

Brad and Carol Burns moved from Fort Worth, Texas, in 2019 to Chapala, Jalisco, in Mexico, dumping their $650-a-month long-term care policy because care is so much more affordable south of the border. Brad, 63, a retired pharmaceutical researcher, said his mother lived just a few miles away in a memory care facility that costs $2,050 a month, which she can afford with her Social Security payments and an annuity. She is receiving “amazing” care, he said.

“As a reminder, most people in Mexico cannot afford the care we find affordable and that makes me sad,” he said. “But their care for us is amazing, all health care, here, actually. At her home, they address her as Mom or Barbarita, little Barbara.”

Insurance Policies Debated

Many, many readers said they could relate to problems with long-term care insurance policies, and their soaring costs. Some who hold such policies said they provided comfort for a possible worst-case scenario while others castigated insurers for making it difficult to access benefits.

“They really make you work for the money, and you’d better have someone available who can call them and work on the endless and ever-changing paperwork,” said Janet Blanding, 62, a technical writer in Fancy Gap, Virginia.

Derek Sippel, 47, a registered nurse in Naples, Florida, cited the $11,000 monthly cost of his mother’s nursing home care for dementia as the reason he bought a policy. He pays about $195 a month with a lifetime benefit of $350,000. “I may never need to use the benefit[s], but it makes me feel better knowing that I have it if I need it,” he said in his comment. He said he could not make that kind of money by investing on his own.

“It’s the risk you take with any kind of insurance,” he said. “I don’t want to be a burden on anyone.”

Pleas for More Immigrant Workers

One solution that readers proposed was to increase the number of immigrants allowed into the country to help address the chronic shortage of long-term care workers. Larry Cretan, 73, a retired bank executive in Woodside, California, said that over time, his parents had six caretakers who were immigrants. “There is no magic bullet,” he said, “but one obvious step — hello, people — we need more immigrants! Who do you think does most of this work?”

Victoria Raab, 67, a retired copy editor in New York, said that many older Americans must use paid help because their grown children live far away. Her parents and some of their peers rely on immigrants from the Philippines and Eritrea, she said, “working loosely within the margins of labor regulations.”

“These exemplary populations should be able to fill caretaker roles transparently in exchange for citizenship because they are an obvious and invaluable asset to a difficult profession that lacks American workers of their skill and positive cultural attitudes toward the elderly,” Raab said.

Federal Fixes Sought

Other readers called for the federal government to create a comprehensive, national long-term care system, as some other countries have. In the United States, federal and state programs that finance long-term care are mainly available only to the very poor. For middle-class families, sustained subsidies for home care, for example, are fairly nonexistent.

“I am a geriatric nurse practitioner in New York and have seen this story time and time again,” Sarah Romanelli, 31, said. “My patients are shocked when we review the options and its costs. Medicaid can’t be the only option to pay for long-term care. Congress needs to act to establish a better system for middle-class Americans to finance long-term care.”

John Reeder, 76, a retired federal economist in Arlington, Virginia, called for a federal single-payer system “from birth to senior care in which we all pay and profit-making [is] removed.”

Other readers, however, argued that people needed to take more responsibility by preparing for the expense of old age.

Mark Dennen, 69, in West Harwich, Massachusetts, said people should save more rather than expect taxpayers to bail them out. “For too many, the answer is, ‘How can we hide assets and make the government pay?’ That is just another way of saying, ‘How can I make somebody else pay my bills?’” he said, adding, “We don’t need the latest phone/car/clothes, but we will need long-term care. Choices.”

Questioning the Value of Life-Prolonging Procedures

A number of readers condemned the country’s medical culture for pushing expensive surgeries and other procedures that do little to improve the quality of people’s few remaining years.

Thomas Thuene, 60, a consultant in Boston’s Roslindale neighborhood, described how a friend’s mother who had heart failure was repeatedly sent from the elder care facility where she lived to the hospital and back, via ambulance. “There was no arguing with the care facility,” he said. “However, the moment all her money was gone, the facility gently nudged my friend to think of end-of-life care for his mother. It seems the financial ruin is baked into the system.”

Joan Chambers, 69, an architectural draftsperson in Southold, New York, said that during a hospitalization on a cardiac unit she observed many fellow patients “bedridden with empty eyes,” awaiting implants of stents and pacemakers.

“I realized then and there that we are not patients, we are commodities,” she said. “Most of us will die from heart failure. It will take courage for a family member to refuse a ‘simple’ procedure that will keep a loved one’s heart beating for a few more years, but we have to stop this cruelty.

“We have to remember that even though we are grateful to our health care professionals, they are not our friends. They are our employees and we can say no.”

One physician, James Sullivan, 64, in Cataumet, a neighborhood of Bourne, Massachusetts, said he planned to refuse hospitalization and other extraordinary measures if he suffered from dementia. “We spend billions of dollars, and a lot of heartache, treating demented people for pneumonia, urinary tract infections, cancers, things that are going to kill them sooner or later, for no meaningful benefit,” Sullivan said. “I would not want my son to spend his good years, and money, helping to maintain me alive if I don’t even know what’s going on,” he said.

Considering ‘Assisted Dying’

Others went further, declaring they would rather arrange for their own deaths than suffer in greatly diminished capacity. “My long-term care plan is simple,” said Karen Clodfelter, 65, a library assistant in St. Louis. “When the money runs out, I will take myself out of the picture.” Clodfelter said she helped care for her mother until her death at 101. “I’ve seen extreme old age,” she said, “and I’m not interested in going there.”

Some suggested that medically assisted death should be a more widely available option in a country that takes such poor care of its elderly. Meridee Wendell, 76, of Sunnyvale, California, said: “If we can’t manage to provide assisted living to our fellow Americans, could we at least offer assisted dying? At least some of us would see it as a desirable solution.”

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

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The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

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

With other GOP presidential candidates following Donald Trump’s lead in calling for an end to the Affordable Care Act, Democrats are jumping on an issue they think will favor them in the 2024 elections. The Biden administration almost immediately rolled out a controversial proposal that could dramatically decrease the price of drugs developed with federally funded research dollars. The drug industry and the business community at large are vehemently opposed to the proposal, but it is likely to be popular with voters.

Meanwhile, the Supreme Court hears arguments in a case to decide whether the Sackler family should be able to shield billions of dollars taken from its bankrupt drug company, Purdue Pharma, from further lawsuits regarding the company’s highly addictive drug OxyContin.

This week’s panelists are Julie Rovner of KFF Health News, Anna Edney of Bloomberg News, Alice Miranda Ollstein of Politico, and Rachana Pradhan of KFF Health News.

Panelists

Anna Edney
Bloomberg

@annaedney

Read Anna's stories

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Rachana Pradhan
KFF Health News

@rachanadpradhan

Read Rachana's stories

Among the takeaways from this week’s episode:

• The ACA may end up back on the proverbial chopping block if Trump is reelected. But as many in both parties know, it is unlikely to be a winning political strategy for Republicans. ACA enrollment numbers are high, as is the law’s popularity, and years after a failed effort during Trump’s presidency, Republicans still have not unified around a proposal to replace it.
• Democrats are eager to capitalize on the revival of “repeal and replace.” This week, the Biden administration announced plans to exercise so-called “march-in rights,” which it argues allow the government to seize certain patent-protected drugs whose prices have gotten too high and open them to price competition. The plan, once largely embraced by progressives, could give President Joe Biden another opportunity to claim his administration has proven more effective than Trump’s heading into the 2024 election.
• The Senate voted to approve more than 400 military promotions this week, effectively ending the 10-month blockade by Republican Sen. Tommy Tuberville of Alabama over a Pentagon policy that helps service members travel to obtain abortions. At the state level, the Texas courts are considering cases over its exceptions to the state’s abortion ban, while in Ohio, a woman who miscarried after being sent home from the hospital is facing criminal charges.
• Meanwhile, the Supreme Court soon could rule on whether EMTALA, or the Emergency Medical Treatment and Active Labor Act, requires doctors to perform abortions in emergencies. And justices are also considering whether to allow a settlement deal to move forward that does not hold the Sacker family accountable for the harm caused by opioids.
• “This Week in Medical Misinformation” highlights a lawsuit filed by Texas Attorney General Ken Paxton accusing Pfizer of failing to end the covid-19 pandemic with its vaccine.

Also this week, Rovner interviews Dan Weissmann, host of KFF Health News’ sister podcast, “An Arm and a Leg,” about his investigation into hospitals suing their patients for unpaid medical bills.

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

Julie Rovner: The Wisconsin State Journal’s “Dane, Milwaukee Counties Stop Making Unwed Fathers Pay for Medicaid Birth Costs,” by David Wahlberg.  

Anna Edney: Bloomberg News’ “Tallying the Best Stats on US Gun Violence Is Trauma of Its Own,” by Madison Muller.  

Alice Miranda Ollstein: Stat’s “New Abortion Restrictions Pose a Serious Threat to Fetal Surgery,” by Francois I. Luks, Tippi Mackenzie, and Thomas F. Tracy Jr. 

Rachana Pradhan: KFF Health News’ “Patients Expected Profemur Artificial Hips to Last. Then They Snapped in Half,” by Brett Kelman and Anna Werner, CBS News.

Also mentioned in this week’s episode:

• Bloomberg News’ “The Pentagon Wants to Root Out Shoddy Drugs. The FDA Is in Its Way,” by Anna Edney and Riley Griffin.
• Ars Technica’s “Texas Sues Pfizer With COVID Anti-Fax Argument That Is Pure Stupid,” by Beth Mole.

Click to open the transcript

Transcript: Democrats See Opportunity in GOP Threats to Repeal Health Law 

KFF Health News’ ‘What the Health?’Episode Title: Democrats See Opportunity in GOP Threats to Repeal Health LawEpisode Number: 325Published: Dec. 7, 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 reporters in Washington. We’re taping this week on Thursday, Dec. 7, at 10 a.m. As always, news happens fast, and things might’ve changed by the time you hear this. So here we go. Today, we are joined via video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Rovner: Anna Edney of Bloomberg News.

Anna Edney: Hello.

Rovner: And my KFF Health News colleague Rachana Pradhan.

Rachana Pradhan: Good morning, Julie.

Rovner: Later in this episode we’ll have my interview with Dan Weissmann, host of our sister podcast, “An Arm and a Leg.” Dan’s been working on a very cool two-part episode about hospitals suing their patients that he will explain. But first, this week’s news. So now that former President [Donald] Trump has raised the possibility of revisiting a repeal of the Affordable Care Act, all of the other Republican presidential wannabes are adding their two cents.

Florida Gov. Ron DeSantis says that rather than repeal and replace the health law, he would “repeal and supersede,” whatever that means. Nikki Haley has been talking up her anti-ACA bona fides in New Hampshire, and the leading Republican candidate for Senate in Montana is calling for a return to full health care privatization, which would mean getting rid of not only the Affordable Care Act, but also Medicare and Medicaid.

But the Affordable Care Act is more popular than ever, at least judging from this year’s still very brisk open enrollment signups. Alice, you wrote an entire story about how the ACA of 2023 is not the ACA of 2017, the last time Republicans took a serious run at it. How much harder would it be to repeal now?

Ollstein: It would be a lot harder. So, not only have a bunch of red and purple states expanded Medicaid since Republicans took their last swing at the law — meaning that a bunch more constituents in those states are getting coverage they weren’t getting before and might be upset if it was threatened by a repeal — but also just non-Medicaid enrollment is up as well, fueled in large part by all the new subsidies that were implemented over the last few years. And that’s true even in states that resisted expansions.

DeSantis’ Florida, for instance, has the highest exchange enrollment in the country. There’s just a lot more people with a lot more invested in maintaining the program. You have that higher enrollment, you have the higher popularity, and we still haven’t seen a real replacement or “supersede” plan, or whatever they want to call it. And folks I talk to on Capitol Hill, Republican lawmakers, even those that were pretty involved last time, do not think such a plan is coming.

Rovner: It did get asked about at the “last” Republican presidential primary debate last night, and there was an awful lot of hemming and hawing about greedy drug companies and greedy insurance companies, and I heard exactly nothing about any kind of plan. Has anybody else seen any sign of something that Republicans would actually do if they got rid of the Affordable Care Act?

Pradhan: No. There was a time, immediately after the ACA’s passage, that health care was a winning political issue for Republicans, right? It was multiple election cycles that they capitalized on Obamacare and used it to regain House majorities, Senate majorities, and the presidency eventually. But that has not been true for multiple years now. And I think they know that. I think establishment Republicans know that health care is not a winning issue for the party, which is why Democrats are so eager to capitalize on this reopening of ACA repeal, if you will.

Rovner: What a perfect segue, because I was going to say the Biden administration is wasting no time jumping back into health care with both feet, trying to capitalize on what it sees as a gigantic Republican misstep. Just this morning, they are rolling out new proposals aimed at further lowering prescription drug prices, and to highlight the fact that they’ve actually gotten somewhere in some lowering of prescription drug prices.

Now they would like to make it easier to use government “march-in rights,” which would let the government basically tell prescription drug companies, “You’re going to lower your price because we’re going to let other people compete against you, despite your patent.” They’re also doing, and I will use their words, a cross-government public inquiry into corporate greed in health care. Now, some of these things are super controversial. I mean, the march-in rights even before this was unveiled, we saw the drug industry complaining against. But they could also have a real impact if they did some of this, right? Anna, you’ve watched the drug price issue.

Edney: Yeah, I think they definitely could have an impact. This is one of those situations with the march-in rights where we don’t have any clue on where or how exactly, because we haven’t been told that this drug or this class of drugs are kind of what we’re aiming at at this point. It sounds like maybe there’s a little bit more of the plan to be baked, but I am sure there are a lot of progressives, particularly, who had pushed for this that, over the years, who are very excited to even see it mentioned and moving in some sort of way, which hasn’t really happened before.

And, clearly, the Biden administration wants to, like you said, capitalize on health care being part of the campaign. And they’ve done a lot on drug prices, at least a lot in the sense of what can be done. There’s negotiation in Medicare now for some drugs. They kept insulin for Medicare as well. So this is just another step they can say, “We’re doing something else,” and we’d have to see down the line exactly where they’d even plan to use it.

And, of course, as pharma always does, they said that this will hurt innovation and we won’t get any drugs. Not that things have been in place that long, but, clearly, we haven’t seen that so far.

Rovner: Yes, that is always their excuse. I feel like this is one of those times where it doesn’t even matter if any of these things get done, they’re putting them out there just to keep the debate going. This is obviously ground that the Biden campaign would love to campaign on — rather than talking about the economy that makes people mostly unhappy. I assume we’ll be seeing more of this.

Edney: Yeah. Your food prices and other things are very high right now. But if they can talk about getting drug prices lower, that’s a totally different thing that they can point to.

Ollstein: And it’s an easy way to draw the contrast. For people who might be apathetic and think, “Oh, it doesn’t matter who wins the presidential election,” this is an area where the Biden administration can credibly claim, based on what Trump recently said, “This is what’s at stake. This is the difference between my opponent and me. The health care of millions is on the line,” which has been a winning message in past elections.

And what’s been really striking to me is that even talking to a bunch of conservatives now, even though they don’t like the Affordable Care Act, they even are starting to argue that full-scale repeal and replace — now that it’s the status quo — that’s not even a conservative proposal.

They’re saying that it’s more conservative to propose smaller changes that chip around the edges and create some alternatives, but mainly leave it in place, which I think is really interesting, because for so long the litmus test was: Are you for full repeal, root and branch? And we’re just not really hearing that much anymore — except from Trump!

Rovner: The difficulty from the beginning is that the basis of the ACA was a Republican proposal. I mean, they were defanged from the start. It’s been very hard for them to come up with a replacement. What it already is is what Mitt Romney did in Massachusetts. Well, let us turn to the other big issue that Democrats hope will be this coming election year, and that’s abortion, where there was lots of news this week.

We will start with the fact that the 10-month blockade of military promotions by Alabama Republican Sen. Tommy Tuberville is over. Well, mostly over. On Tuesday, the Senate approved by voice vote more than 400 promotions that Tuberville had held up, with only a few four-star nominees still in question. Tuberville’s protests had angered not just Senate Democrats and the Biden administration, who said it was threatening national security, but increasingly his own Senate Republican colleagues.

Tuberville said he was holding up the nominations to protest the Biden administration’s policy of allowing active-duty military members and their dependents to travel out of state for an abortion if they’re stationed where it’s illegal, like in, you know, Alabama. So Alice, what did Tuberville get in exchange for dropping his 10-month blockade?

Ollstein: So, not much. I mean, his aim was to force the Biden administration to change the policy, and that didn’t happen — the policy supporting folks in the military traveling if they’re based in a state where abortion is banned and they need an abortion, supporting the travel to another state, still not paying for the abortion itself, which is still banned. And so that was the policy Tuberville was trying to get overturned, and he did not get that. So he’s claiming that what he got was drawing attention to it, basically. So we’ll see if he tries to use this little bit of remaining leverage to do anything. It does not seem like much was accomplished through this means, although there is a lot of anxiety that this sets a precedent for the future, not just on abortion issues, but, really, could inspire any senator to try to do this and hold a bunch of nominees hostage for whatever policy purpose they want.

Rovner: I know. I mean, senators traditionally sit on nominees for Cabinet posts. And the FDA and the CMS [Centers for Medicare & Medicaid Services] didn’t have a director for, like, three administrations because members were angry at the administration for something about Medicare and Medicaid. But I had never seen anybody hold up military promotions before. This was definitely something new. Rachana, you were going to add something?

Pradhan: Oh, I mean, I was just thinking on Alabama specifically. I mean, I don’t claim to know, even though there was rising anger in Sen. Tuberville’s own party about this move. I mean, I’m not saying I know that this is a factor or not, but in Alabama, regardless of what he tried to do, I think that the attorney general in Alabama has made it clear that he might try to prosecute organizations that help people travel out of state to get abortions.

And so, it’s not like this is only the last word when you’re even talking about military officers or people in the military. Even in his home state, you might see some greater activity on that anyway, which might make it easier for him to honestly, in a way, give it up because it’s not the only way that you could presumably prosecute organizations or people who tried to help others go out of state to access abortion.

Rovner: Yeah, it’s important to say that while he irritated a lot of people in Washington, he probably had a lot of support from people back home in Alabama, which he kept pointing out.

Ollstein: Right. And I saw national anti-abortion groups really cheering him on and urging their members to send him thank-you letters and such. And so definitely not just in his home state. There are conservatives who were backing this.

Rovner: Well, moving on to Texas, because there is always abortion news out of Texas, we have talked quite a bit about the lawsuit filed by women who experienced pregnancy complications and couldn’t get abortions. Well, now we have a separate emergency lawsuit from a woman named Kate Cox, who is currently seeking an abortion because of the threat to her health and life.

Both of these lawsuits aren’t trying to strike the Texas ban, just to clarify when a doctor can perform a medically needed abortion without possibly facing jail time or loss of their medical license. Alice, I know the hearing for Kate Cox is happening even now as we are taping. What’s the status of the other case? We’re waiting to hear from the Texas Supreme Court. Is that where it is?

Ollstein: Yeah. So oral arguments were the other day and a bunch of new plaintiffs have joined the lawsuit. So it’s expanded to a few dozen people now, mostly patients, but some doctors as well who are directly impacted by the law. There was some interesting back and forth in the oral arguments over standing.

And one of the things the state was hammering was that they don’t have standing to sue because they aren’t in this situation that this other woman is in today, where they’re actively pregnant, actively in crisis, and being actively prevented from accessing the health care that they need that their doctor recommends, which in some circumstances is an abortion. And so I think this is an interesting test of the state’s argument on that front.

Rovner: Also, the idea, I mean, that a woman who literally is in the throes of this crisis would step forward and have her name in public and it’s going to court in an emergency hearing today.

Ollstein: Right, as opposed to the other women who were harmed previously. By the time they are seeking relief in court, their pregnancy is already over and the damage has already been done, but they’re saying it’s a threat of a future pregnancy. It’s impacting their willingness to become pregnant again, knowing what could happen, what already happened. But the state was saying like, “Oh, but because you’re not actively in the moment, you shouldn’t have the right to sue.” And so now we’ll see what they say when someone is really in the throes of it.

Rovner: In the moment. Well, another troubling story this week comes from Warren, Ohio, where a woman who experienced a miscarriage is being charged with “abuse of a corpse” because she was sent home from the hospital after her water broke early and miscarried into her toilet, which is gross, but that’s how most miscarriages happen.

The medical examiner has since determined that the fetus was, in fact, born dead and was too premature to survive anyway. Yet the case seems to be going forward. Is this what we can expect to see in places like Ohio where abortion remains legal, but prosecutors want to find other ways to punish women?

Ollstein: I mean, I also think it’s an important reminder that people were criminalized for pregnancy loss while Roe [v. Wade] was still in place. I mean, it was rare, but it did happen. And there are groups tracking it. And so I think that it’s not a huge surprise that it could happen even more now, in this post-Roe era, even in states like Ohio that just voted overwhelmingly to maintain access to abortion.

Pradhan: Julie, do we know what hospital? Because when I was looking at the story, do we know what kind of hospital it was that sent this person away?

Rovner: No. The information is still pretty sketchy about this case, although we do know the prosecutor is sending it to a grand jury. We know that much. I mean, the case is going forward. And we do know that her water broke early and that she did visit, I believe, it was two hospitals, although I have not seen them named. I mean, there’s clearly more information to come about this case.

But yeah, Alice is right. I mean, I wrote about a case in Indiana that was in 2012 or 2013, it was a long time ago, about a woman who tried to kill herself and ended up only killing her fetus and ended up in jail for a year. I mean, was eventually released, but … it’s unusual but not unprecedented for women to be prosecuted, basically, for pregnancy loss.

Ollstein: Yeah, especially people who are struggling with substance abuse. That’s been a major area where that’s happened.

Pradhan: I would personally be very interested in knowing the hospitals that are a part of this and whether they are religiously affiliated, because there’s a standard of care in medicine for what happens if you have your water break before the fetus is viable and what’s supposed to happen versus what can happen.

Rovner: There was a case in Michigan a few years ago where it was a Catholic hospital. The woman, her water broke early. She was in a Catholic hospital, and they also sent her home. I’m trying to remember where she finally got care. But yeah, that has been an issue also over the years. Well, meanwhile, back here in Washington, the Supreme Court is likely to tell us shortly, I believe, whether the 1986 Emergency Medical Treatment and Active Labor Act, known as EMTALA, requires doctors to perform abortions in life-threatening situations, as the Biden administration maintains.

Alice, this case is on what’s known as the “shadow docket” of the Supreme Court, meaning it has not been fully briefed and argued. It’s only asking if the court will overturn a lower court’s ruling that the federal law trumps the state’s ban. When are we expecting to hear something?

Ollstein: It could be after justices meet on Friday. Really, it could be whenever after that. As we’ve seen in the last few years, the shadow docket can be very unpredictable, and we could just get, at very odd times, major decisions that impact the whole country or just one state. And so, yes, I mean, this issue of abortion care and emergency circumstances is playing out in court in a couple different states, and the federal government is getting involved in some of those states.

And so I think this could be a big test. Unlike a lot of lawsuits going on right now, this is not seeking to strike down the state’s abortion ban entirely. It’s just trying to expand and clarify that people who are in the middle of a medical emergency shouldn’t be subject to the ban.

Rovner: It’s similar to what they’re fighting about in Texas, actually.

Ollstein: Yeah, exactly. And this is still playing out at the 9th Circuit, but they’re trying to leapfrog that and get the Supreme Court to weigh in the meantime.

Rovner: Yeah, and we shall see. All right, well, while we’re on the subject of “This Week in Court,” let us move on to the case that was argued in public at the Supreme Court this week about whether the Sackler family can keep much of its wealth while declaring bankruptcy for its drug company, Purdue Pharma, that’s been found liable for exacerbating, if not causing much of the nation’s opioid epidemic.

The case involves basically two bad choices: Let the Sacklers manipulate the federal bankruptcy code to shield billions of dollars from future lawsuits or further delay justice for millions of people injured by the company’s behavior. And the justices themselves seem pretty divided over which way to go. Anna, what’s at stake here? This is a lot, isn’t it?

Edney: Yeah. I mean, it’s interesting how it doesn’t exactly break down on ideological lines. The justices were — I don’t want to say all over the place, because that sounds disrespectful — but they had concerns on many different levels. And one is that the victims and their lawyers negotiated the settlement because for them it was the best way they felt that they could get compensation, and they didn’t feel that they could get it without letting the Sacklers off the hook, that the Sacklers basically would not sign the settlement agreement, and they were willing to go that route.

And the government is worried about using that and letting the Sacklers off the hook in this way and using this bankruptcy deal to be able to shield a lot of their money that they took out of the company, essentially, and have in their personal wealth now. And so that’s something that a lot of companies are, not a lot, but companies are looking to hope to use the sign of bankruptcy protection when it comes to big class-action lawsuits and harm to consumers.

And so I think that what the worry is is that that then becomes the precedent, that the ones at the very top will always get off because it’s easier to negotiate the settlement that way.

Rovner: We’ll obviously have to wait until — as this goes a few months — to see the decisions in this case, but it’s going to be interesting. I think everybody, including the justices, are unhappy with the set of facts here, but that’s why it was in front of the Supreme Court. So our final entry in “This Week in Court” is a twofer. It is also “This Week in Health Misinformation.”

Texas Attorney General Ken Paxton has filed suit against Pfizer for allegedly violating Texas’ Deceptive Trade Practices Act because its covid vaccine did not, in fact, end the covid epidemic. Quoting from the attorney general’s press release, “We are pursuing justice for the people of Texas, many of whom were coerced by tyrannical vaccine mandates to take a defective product sold by lies.” It’s hard to even know where to start with this, except that, I guess, anyone can sue anyone for anything in Texas, right?

Edney: Yeah, that’s a very good point. The entire concept of it feels so weird. I mean, a vaccine doesn’t cure anything, right? That’s not the point of a vaccine. It’s not a drug. It is a vaccine that is supposed to prevent you from getting something, and not everybody took it. So that feels like the end of the story, but, clearly, the attorney general would prefer attention, I think, on this, and to continue to sow doubt in vaccines and the government and the Food and Drug Administration seems to be maybe more of the point here.

Rovner: I noticed he’s only suing for, I think, it’s $10 million, which is frankly not a ton of money to a company as big as Pfizer. So one would assume that he’s doing this more for the publicity than for the actual possibility of getting something.

Pradhan: Yeah, I think Pfizer’s CEO’s annual salary is more than the damages that are being sought in this case. So it’s really not very much money at all. I mean, more broadly speaking, I mean, Texas, Florida, I think you see especially post-public-health-emergency-covid times, the medical freedom movement has really taken root in a lot of these places.

And I think that it just seems like this is adding onto that, where doctors say they should be able to give ivermectin to covid patients and it helped them and not be at risk of losing their license. And that’s really kind of an anti-vaccine sentiment. Obviously, it’s very alive and well.

Rovner: We are post-belief-in-scientific-expertise.

Edney: Well, I was going to say, I appreciated The Texas Tribune’s story on this because they called out every time in this lawsuit that he was twisting the truth or just completely not telling the truth at all in the sense that he said that more people who took the vaccine died, and that’s clearly not the case. And so I appreciated that they were trying to call him out every time that he said something that wasn’t true, but was just completely willing to put that out in the public sphere as if it was.

Rovner: There was also a great story on Ars Technica, which is a scientific website, about how the lawsuit completely misrepresents the use of statistics, just got it completely backwards. We’ll post a link to that one too. Well, while we are talking about drug companies, let’s talk about some drugs that really may not be what companies say they are.

Anna, you have a new story up this week about the Pentagon’s effort to ensure that generic drugs are actually copies of the drugs they’re supposed to be. That effort’s running into a roadblock. Tell us a little about that.

Edney: Yeah, thanks for letting me talk about this one. It’s “The Pentagon Wants to Root Out Shoddy Drugs. The FDA Is in Its Way.” So the FDA is the roadblock to trying to figure out whether the drugs, particularly that the military and their family members are taking, work well and don’t have side effects that could be extremely harmful. So what’s going on here is that the Defense Department and others, the White House even, has grown skeptical of the FDA’s ability to police generic drugs, largely that are made overseas.

We did some analysis and we found that it was actually 2019 was the first time that generic drug-making facilities in India surpassed the number of those in the U.S. So we are making more, not just active ingredients, but finished products over in India. And the FDA just doesn’t have a good line into India. They don’t do many unannounced inspections. They usually have to tell the company they’re coming weeks in advance. And what we found is when the Defense Department started looking into this, they partnered with a lab to test some of these drugs.

They got some early results. Those results were concerning, as far as the drug might not work, and also could cause kidney failure, seizures. And even despite this, they’ve been facing the FDA around every corner trying to stop them and trying to get them not to test drugs. They say it’s a waste of money, when, in fact, Kaiser Permanente has been doing this for its 12.7 million members for several years.

And it just seems like something is going on at the FDA and that they don’t want people to have any questions about generic drugs. They really just want everyone to accept that they’re always exactly the same, and they even derail the White House effort to try to look into this more as well. But the Pentagon said, “Thank you very much, FDA, but we’re going forward with this.”

Rovner: Yeah. I mean, I could see that the FDA would be concerned about … they’re supposed to be the last word on these things. But, as you point out and as much of your reporting has pointed out over the last couple of years, the FDA has not been able to keep up with really making sure that these drugs are what they say they are.

Edney: One thing I learned that was interesting, and this is that in Europe, actually, there’s a network of 70 labs that do this kind of testing before drugs reach patients and after they reach patients. So it’s not a totally unusual thing. And for some reason, the FDA does not want that to happen.

Rovner: Well, finally on the drug beat this week, CVS announced earlier that it would overhaul its drug pricing to better reflect how much it pays for the drugs, all of which sounds great, but the fact is that how much CVS pays for the drugs doesn’t have all that much effect on how much we end up paying CVS for those same drugs, right? They’re just changing how they get the drugs from the manufacturers, not necessarily how they price it for the customers.

Pradhan: I think my main question would be, what does that mean for a patient’s out-of-pocket cost for prescriptions? I don’t know how much of this has to do with … for CVS as the pharmacy, but we have CVS Caremark, which is a major PBM, and how this affects the pricing models there. And PBMs, of course, have been under scrutiny in Congress. And there’s outside pressure too, right? The story that you highlighted, Julie, talks about Mark Cuban’s affordable-drug effort. And so, yeah, I don’t know. I mean, I think it sounds good until maybe we see some more details, right?

Rovner: I saw one story that said, “This could really help lower drug prices for consumers,” and one that said, “This could actually raise drug prices for consumers.” So I’m assuming that this is another one where we’re going to have to wait and see the details of. All right, well, that is this week’s news.

Now we will play my interview with Dan Weissmann of the “Arm and a Leg” podcast, and then we will come back with our extra credits. I am pleased to welcome back to the podcast Dan Weissmann, host of KFF Health News’s sister podcast, “An Arm and a Leg.” Dan has a cool two-part story on hospitals suing patients for overdue bills that he’s here to tell us about. Dan, welcome back.

Dan Weissmann: Julie, thanks so much for having me.

Rovner: So over the past few years, there have been a lot of stories about hospitals suing former patients, including a big investigation by KFF Health News. But you came at this from kind of a different perspective. Tell us what you were trying to find out.

Weissmann: We were trying to figure out why hospitals file lawsuits in bulk. Investigative reporters like Jay Hancock at KFF [Health News] have documented this practice, and one of the things that they note frequently is how little money hospitals get from these lawsuits. Jay Hancock compared the amount that VCU [Health] was seeking from patients and compared it to that hospital system’s annual surplus, their profit margin, and it looked tiny. And other studies document essentially the same thing. So why do they do it?

And we got a clue from a big report done by National Nurses United in Maryland, which, in addition to documenting how little money hospitals were getting compared to the million-dollar salaries they were paying executives in this case, also noted that a relatively small number of attorneys were filing most of these lawsuits. Just five attorneys filed two-thirds of the 145,000 lawsuits they documented across 10 years, and just one attorney filed more than 40,000 cases. So we were like, huh, maybe that’s a clue. Maybe we found somebody who is getting something out of this. We should find out more.

Rovner: So you keep saying “we” — you had some help working on this. Tell us about your partners.

Weissmann: Oh my God, we were so, so lucky. We work with The Baltimore Banner, which is a new daily news outlet in Baltimore, new nonprofit news outlet in Baltimore, that specializes in data reporting. Their data editor, Ryan Little, pulled untold numbers of cases, hundreds of thousands of cases, from the Maryland courts’ website and analyzed them to an inch of their life and taught us more than I could ever have imagined.

And Scripps News also came in as a partner and one of their data journalists, Rosie Cima, pulled untold numbers of records from the Wisconsin court system and worked to analyze data that we also got from a commercial firm that has a cache of data that has more detail than what we could pull off the website. It was a heroic effort by those folks.

Rovner: So what did you find? Not what you were expecting, right?

Weissmann: No. While Rosie and Ryan were especially gathering all this data and figuring out what to do with it, I was out talking to a lot of people. And what I found out is that in the main, it appears that frequently when these lawsuits happen and when hospitals file lawsuits in general, they’re not being approached by attorneys. They’re working with collection agencies. And most hospitals do work with a collection agency, and it’s essentially like, I put it like, you get a menu, oh, I’m having a hamburger, I’m going to pursue people for bills.

Like, OK, do you want onions? Do you want mustard? Do you want relish? What do you want on it? And in this case, it’s like, how hard do you want us to go after people? Do you want us to hit their credit reports — if you still can do that, because the CFPB [Consumer Financial Protection Bureau] has been making regulations about that — but do you want us to do that? How often can we call them? And do you want us to file lawsuits if we don’t get results? And so that is essentially in consultation with the hospital’s revenue department and the collection agency, and it’s a strategic decision between them.

That was what we found out through talking to people. What Rosie and Ryan turned up, and the data we had from the folks in New York backed up, is that, surprisingly, in the three states that we looked at, there’s just so much less of this activity than we had expected to find. In Maryland, Ryan sent me a series of emails, the first saying, like, “I’m not actually seeing any this year. That’s got to be wrong. They must be hiding them somewhere. I’m going to go investigate.” And a week later he was like, “I think I found them, and then we’ll go run some more numbers.”

And then a week later, after going to the courthouse and looking at everything you could find, he was like, “No, actually Maryland hospitals just do not seem to be suing anybody this year.” And we had expected there to be fewer lawsuits, but zero was a surprise to everybody. In New York, we appear to have found that two of those three law firms handling all those cases are no longer handling medical bill cases. And in Wisconsin, final numbers are still being crunched. Our second part will have all those numbers.

The Banner is coming out with their numbers this week. But Scripps News and us are still crunching numbers in Wisconsin. But what was the biggest shocker was, I can just tell you, there were so many fewer lawsuits than we had expected, and many of the most active plaintiffs had either cut the practice entirely, like filing zero lawsuits or filing hardly any. One of the things that a lot of these reports that look at across a state, like in New York and the Maryland report, note, and that we found in Wisconsin too, is that most hospitals don’t do this.

Noam Levey at KFF [Health News] found that many hospitals have policies that say, “We might file a lawsuit,” and some larger number of hospitals file some lawsuits. But in all these cases where you’re seeing tons of lawsuits filed, the phenomenon of suing people in bulk is actually not business as usual for most hospitals. That is driven by a relatively small group of players. There was a study in North Carolina by the state treasurers, obviously and Duke University, that found 95% of all the lawsuits were filed by just a few institutions.

The New York people found this. We’ve seen it in Wisconsin. So I mean, it’s another very interesting question when you’re looking at why does this happen. It’s like it’s not something that most institutions do. And again, in Wisconsin, we found that most of the players that had been the most active had basically stopped.

Rovner: Do we know why? Is it just all of the attention that we’ve seen to this issue?

Weissmann: Probably the answer is we don’t know why. Our colleagues at The Banner called every hospital in Maryland and were not told very much. We emailed all the hospitals in Wisconsin that we could that we had seen dramatically decrease, and nobody came to the phone. So we don’t really know.

But it does seem like, certainly in Maryland and New York, there were these huge campaigns that got tons of publicity and got laws changed, got laws passed. And there has been attention. The reports that Bobby Peterson put out in Wisconsin got attention locally. Sarah Kliff of The New York Times, who’s been writing about these kinds of lawsuits, has written multiple times about hospitals in Wisconsin. So it seems like a good first guess, but it’s a guess. Yeah.

Rovner: Well, one thing that I was interested that you did turn up, as you pointed out at the top, hospitals don’t get very much money from doing this. You’re basically suing people for money that they don’t have. So you did find other ways that hospitals could get reimbursed. I mean, they are losing a lot of money from people who can’t pay, even people with insurance, who can’t pay their multi-thousand-dollar deductible. So what could they be doing instead?

Weissmann: They could be doing a better job of evaluating people’s ability to pay upfront. The majority of hospitals in the United States are obligated by the Affordable Care Act to have charity care policies, financial assistance policies, in which they spell out, if you make less than a certain amount of money, it’s a multiple of the federal poverty level that they choose, we’ll forgive some or all of your bill. And, frequently, that number is as much as four times the federal poverty level. They might knock 75% off your bill, which is a huge help.

And as a guy that I met noted, using data from KFF, 58% of Americans make less than 75% of the federal poverty level. That is a lot of people. And so if you’re chasing someone for a medical bill, they might very well have been someone you could have extended financial assistance to. This guy, his name is Nick McLaughlin, he worked for 10 years for a medical bill collections agency. Someone in his family had a medical bill they were having a hard time paying, and he figured out that they qualified for charity care, but the application process, he noted, was really cumbersome, and even just figuring out how to apply was a big process. And so he thought, I know that chasing people for money they don’t have isn’t really the best business model and that we’re often chasing people for money they don’t have. What if we encourage hospitals to be more proactive about figuring out if someone should be getting charity care from them in the first place?

Because, as he said, every time you send someone a bill, you’re spending two bucks. And you’re not just sending one bill, you’re sending like three bills and a final notice. That all adds up, and you’re manning a call center. You’re spending money and you’re missing opportunities by not evaluating people. Because while you’re asking about their income, you might find out they’re eligible for Medicaid, and you can get paid by Medicaid rather than chasing them for money they don’t have.

And two, they might update their insurance information from you and you can get money from their insurance. You can extend financial assistance to somebody, as you said, who has a deductible they can’t pay, and they might actually come to you for care that you can unlock money from their insurance if they’re going to come to you because they’re not afraid of the bill.

I should absolutely say, while Nick McLaughlin is selling hospitals on the idea of adopting new software, which is a great idea, they should do that, they should be more proactive, an entity called Dollar For, a nonprofit organization out of the Pacific Northwest that’s been doing work all over the country, has been beating the drum about this and has a tool that anybody can use.

Essentially, go to their website, dollarfor.org, and type in where you were seen and an estimate of your income, and they will tell you, you’re likely to qualify for charity care at this hospital, because they have a database of every hospital’s policy. And if you need help applying, because some of these applications are burdensome, we’ll help you. So this exists, and everybody should know about it and everybody should tell everybody they know about it. I think the work they’re doing is absolutely heroic.

Rovner: Well, Dan Weissmann, thank you so much for joining us. We will post a link to Dan’s story in our show notes and on our podcast page.

Weissmann: Julie, thanks so much for having me.

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. Anna, why don’t you go first this week?

Edney: Sure. This is from my colleague Madison Muller, “Tallying the Best Stats on US Gun Violence Is Trauma of Its Own.” And I thought she just did such an amazing job with this story, talking to Mark Bryant, who helped start an organization, Gun Violence Archive, which is essentially the only place that is trying to tally every instance of gun violence.

And because of a lot of the restrictions that the NRA has helped get into government regulations and things, some of them which are more recently loosening, but because of those in the past, this is really the only way you could try to look up these statistics. And he’s just given the last decade of his life, with no breaks, trying to do this and his health is failing. And I thought it was just a really poignant look at somebody who has no skin in the game, but just wanted the right information out there.

Rovner: Yeah, obviously this is a big deal. Alice.

Ollstein: I did an op-ed that was published in Stat by a group of fetal medicine specialists who are writing about how their work is being compromised by state abortion bans right now. They were saying these are very risky, high-stakes procedures where they perform operations in utero, latent pregnancy usually, and it’s an attempt to save the pregnancy where there is a big risk. But with all of these, there are risks that it could end the pregnancy, and now they’re afraid of being prosecuted for that.

And they describe a bunch of challenging situations that, even without these bans are challenging, things where there’s twins and something to help one could harm the other twin, and this could all affect the health and life of the parent as well. And so they’re saying that they’re really in this whole new era and have to think about the legal risks, as well as the medical and bioethical ones that they already have to deal with.

Rovner: I’ve reported about this over the years, and I can tell you that these are always really wrenching family decisions about trying to desperately save a pregnancy by doing this extraordinarily difficult and delicate kind of procedure. Rachana.

Pradhan: My extra credit is a story from our colleague Brett Kelman, who worked on this investigation with CBS News. It is about a type of artificial hip known as Profemur that literally were snapping in half in patients’ bodies. I told Brett earlier this week that I was cringing at every line that I read. So if folks want to get a really, frankly, pretty gruesome, awful story about how people around the country have received these artificial hips, and the fact that they broke inside their bodies has really caused a lot of damage.

And, frankly, I know we talked about the FDA, but also this story really sheds light on how the FDA has dropped the ball in not acting with more urgency. And had they done that, many of these injuries likely would’ve been avoided. So, I urge everyone to read it. It’s a great story.

Rovner: It is. I also flinched when I was reading a lot of it. Well, my story is from the Wisconsin State Journal by David Wahlberg, and it’s called “Dane, Milwaukee Counties Stop Making Unwed Fathers Pay for Medicaid Birth Costs.” And while I have been covering Medicaid since the 1980s, and I never knew this even existed, it seems that a handful of states, Wisconsin among them, allows counties to go after the fathers of babies born on Medicaid, which is about half of all births — Medicaid’s about half of all births.

Not surprisingly, making moms choose between disclosing the father to whom she is not married to the state or losing Medicaid for her infant is not a great choice. And there’s lots of research to suggest that it can lead to bad birth outcomes, particularly in African American and Native American communities. I have long known that states can come after the estates of seniors who died after receiving Medicaid-paid nursing home or home care, but this one, at the other end of life, was a new one to me.

Now, I want to know how many other states are still doing this. And when I find out, I’ll report back.

OK, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcast. We’d appreciate it if you left us a review. That helps other people find us too. Thanks, as always, to our tireless tech guru, Francis Ying, who’s back from vacation. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X, @jrovner, or @julierovner at Bluesky and Threads. Anna?

Edney: @anna_edneyreports on Threads and @annaedney on X.

Rovner: Rachana.

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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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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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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

@danweissmann

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

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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.

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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.

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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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