KFF Health News' 'What the Health?': Health Enters the Presidential Race
The Host
Julie Rovner
KFF Health News
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.
Based on the results of the first-in-the-nation primary in New Hampshire, it appears more likely than ever before that the 2024 presidential election will be a rerun of 2020: Joe Biden versus Donald Trump. And health is shaping up to be a key issue.
Trump is vowing — again — to repeal the Affordable Care Act, which is even more popular than it was when Republicans failed to muster the congressional votes to kill it in 2017. Biden is doubling down on support for contraception and abortion rights.
And both are expected to highlight efforts to rein in the cost of prescription drugs.
This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Anna Edney of Bloomberg News, and Jessie Hellmann of CQ Roll Call.
Panelists
Alice Miranda Ollstein
Politico
Anna Edney
Bloomberg
Jessie Hellmann
CQ Roll Call
Among the takeaways from this week’s episode:
- Trump had a strong showing in the New Hampshire GOP primary. But Biden may be gathering momentum himself from an unexpected source: Drug industry lawsuits challenging his administration’s Medicare price negotiation plan could draw attention to Biden’s efforts to combat rising prescription drug prices, a major pocketbook issue for many voters.
- Biden’s drug pricing efforts also include using the government’s so-called march-in rights on pharmaceuticals, which could allow the government to lower prices on certain drugs — it’s unclear which ones. Meanwhile, Sen. Bernie Sanders of Vermont is calling on his committee to subpoena the CEOS of two drugmakers in the latest example of lawmakers summoning Big Pharma executives to the Hill to answer for high prices.
- More than a year after the Supreme Court overturned the constitutional right to an abortion, abortion opponents gathered in Washington, D.C., for the March for Life rally, looking now to continue to advance their priorities under a future conservative presidency.
- One avenue that abortion opponents are eying is the 19th-century Comstock Act, which could not only prohibit the mailing of abortion pills to patients, but also prevent them from being mailed to clinics and medical facilities. Considering the abortion pill is now used in more than half of abortions nationwide, it would amount to a fairly sweeping ban.
- And state legislators continue to push more restrictive abortion laws, targeting care for minors and rape exceptions in particular. The ongoing quest to winnow access to the procedure amid public reservations reflected in polling and ballot initiatives highlights that, for at least some abortion opponents, fetuses are framed as an oppressed minority whose rights should not be subject to a majority vote.
Also this week, Rovner interviews Sarah Somers, legal director of the National Health Law Program, about the potential effects on federal health programs if the Supreme Court overturns a 40-year-old precedent established in the case Chevron USA v. Natural Resources Defense Council.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: Health Affairs’ “‘Housing First’ Increased Psychiatric Care Office Visits and Prescriptions While Reducing Emergency Visits,” by Devlin Hanson and Sarah Gillespie.
Alice Miranda Ollstein: Stat’s “The White House Has a Pharmacy — And It Was a Mess, a New Investigation Found,” by Brittany Trang.
Anna Edney: The New Yorker’s “What Would It Mean for Scientists to Listen to Patients?” by Rachael Bedard.
Jessie Hellmann: North Carolina Health News’ “Congenital Syphilis — An Ancient Scourge — Claimed the Lives of Eight NC Babies Last Year,” by Jennifer Fernandez.
Also mentioned on this week’s podcast:
Stat’s “Pharma’s Attack on Medicare Drug Price Negotiation Might Benefit Biden,” by John Wilkerson.
click to open the transcript
Transcript: Health Enters the Presidential Race
KFF Health News’ ‘What the Health?’Episode Title: Health Enters the Presidential RaceEpisode Number: 331Published: Jan. 25, 2024
[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, Jan. 25, 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 Alice Miranda Ollstein of Politico.
Alice Miranda Ollstein: Good morning.
Rovner: Jessie Hellmann of CQ Roll Call.
Jessie Hellmann: Hi there.
Rovner: And Anna Edney of Bloomberg News.
Anna Edney: Hello.
Rovner: Later in this episode we’ll have my interview with Sarah Somers of the National Health Law Program. She’s going to explain what’s at risk for health care if the Supreme Court overturns the Chevron doctrine, and if you don’t know what that is, you will. But first, this week’s news. We’re going to start this week with politics. To absolutely no one’s surprise, Donald Trump won the first-in-the-nation New Hampshire primary, and even though he wasn’t even on the ballot, because Democrats no longer count New Hampshire as first, President [Joe] Biden handily won a write-in campaign.
Since it seems very likely at this point that the November ballot will pit Trump versus Biden once again, I thought we’d look, briefly at least, at both of their health agendas for now. Trump has once again vowed to try and repeal the Affordable Care Act, which not only didn’t go well in 2017, we learned this week that the federal marketplace enrolled a record 21.3 million people for this year. In 2017, that number was 12.2 million. Not to mention there are now a half a dozen more states that have expanded Medicaid to low-income childless adults.
So with so many more millions of Americans getting coverage via Obamacare, even if Trump wants to repeal and replace it, is there any chance Republicans would go along, even if he wins back majorities in the House and the Senate? They have seemed rather unwilling to reopen this box of worms.
Edney: I mean, certainly, I think that currently they’re unwilling. I don’t want to pretend that I know what the next several months will hold until November, but even before they’re willing or not, what would the plan be? We never saw one, and I don’t anticipate there would be any sort of real plan, particularly if it’s the Trump White House itself having to put the plan together to repeal Obamacare.
Rovner: Yes. How many times did he promise that “we’ll have a plan in two weeks” throughout most of his administration? Alice, you were saying?
Ollstein: Yes. I think what we should be thinking about, too, is this can happen not through Congress. There’s a lot of President Trump could do theoretically through the executive branch, not to repeal Obamacare, but to undermine it and make it work worse. They could slash outreach funding, they could let the enhanced tax credit subsidies expire — they’re set to expire next year. That would also be on Congress. But a president who is opposed to it could have a role in that; they could slash call center assistance. They could do a lot. So I think we should be thinking not only about could a bill get through Congress, but also what could happen at all of the federal agencies.
Rovner: And we should point out that we know that he could do some of these things because he did them in his first term.
Ollstein: He did them the first time, and they had an impact. The uninsured rate went up for the first time under Trump’s first term, for the first time since Obamacare went into effect. So it can really make a difference.
Rovner: And then it obviously went down again. But that was partly because Congress added these extra subsidies and even the Republican Congress required people to stay on Medicaid during the pandemic. Well, I know elsewhere, like on abortion, Trump has been all over the place, both since he was in office and then since he left office. And then now, Alice, do we have any idea where he is on this whole very sensitive abortion issue?
Ollstein: He has been doing something very interesting recently, which is he’s sort of running the primary message and the general message at the same time. So we’re used to politicians saying one thing to a primary audience. These are the hard-core conservatives who turn out in primaries and they want to hear abortion is going to be restricted. And then the general audience — look at how all of these states have been voting — they don’t want to hear that. They want to hear a more moderate message and so Trump has been sort of giving both at once. He’s both taking credit for appointing the Supreme Court justices, who overturned Roe v. Wade. He has said that he is pro-life, blah, blah, blah. But he has also criticized the anti-abortion movement for going too far in his view. He criticized Ron DeSantis’ six-week ban for going too far. He has said that any restrictions need to have exemptions for rape and incest, which not everyone in the movement agrees with. A lot of people disagree with that in the anti-abortion movement. And so it has been all over the place.
But his campaign is in close contact with a lot of these groups and the groups are confident that he would do what they want. So I think that you have this interesting tension right now where he is saying multiple mixed messages.
Rovner: Which he always does, and which he seems to somehow get away with. And again, just like with the ACA, we know that all of these things that he could do just from the executive branch about reproductive health, because he did them when he was president the first time. Meanwhile, President Biden, in addition to taking a victory lap on the Affordable Care Act enrollment, is doubling down on abortion and contraception, which is pretty hard because, first, as executive, he doesn’t have a ton of power to expand abortion rights the way Trump would actually have a lot of power to contract them.
And, also, because as we know, Biden is personally uncomfortable with this issue. So Alice, how well is this going to work for the Biden administration?
Ollstein: So what was announced is mostly sort of reiterating what is already the law, saying we’re going to do more to educate people about it and crack down on people who are not following it. So this falls into a few different buckets. Part of it is Obamacare’s contraception mandate. There have been lots of investigations showing that a lot of insurers are denying coverage for contraceptives they should be covering or making patients jump through hoops. And so it’s not reaching the people it should be reaching. And so they’re trying to do more on that front.
And then, on the abortion front, this is mostly in this realm of abortions in medical emergencies. They’re trying to educate patients on “you can file this complaint if you are turned away.” Of course, I’m thinking of somebody experiencing a medical emergency and needing abortion and being turned away, and I don’t think “I’m going to file an EMTALA [Emergency Medical Treatment and Active Labor Act] complaint with the federal government and hope that they do something” is maybe the first thing on their mind. But the new executive order also includes education for providers and hospitals on their obligations.
This is also something a Trump administration could completely change. They could come in and say, “Forget that guidance. Here’s our guidance, which is no abortions in these circumstances.” So this is a really sensitive issue, but I think that the Biden campaign has seen how people have been voting over the last two years and feels that this is a really good message for them to do something on.
Rovner: Meanwhile, one issue both Republicans and Democrats are trying to campaign on is bringing down the cost of prescription drugs. Stat News has a story this week suggesting that all the lawsuits against the Medicare drug negotiation program could actually help Biden with voters because it shows he’s going after Big Pharma. Frankly, it could also tell voters that the Biden administration actually did something to challenge Big Pharma. Polls show most people have no idea, but Trump can point to lots of lawsuits over things he tried to do to Big Pharma.
Does one or the other of them have an advantage here, Anna? I mean, I know they’re going in different directions, but when you sort of boil it into campaign-speak, it’s going to sound pretty similar, right?
Edney: I think that that’s true, but one of the differences is, at least currently, what Biden’s done and doing some price negotiation through Medicare so far for 10 drugs under his administration is going forward. And you can name the drugs, name the prices, talk about it a little bit more specifically. What Trump ran up against was the lawsuits not falling in his favor. So he wanted more transparency as far as the drug companies having to say the price of their drugs in TV ads, and that wasn’t able to happen. And also reference pricing, so that the prices would be benchmarked to other countries. And certainly that never went forward either. And Trump really used the going after pharma hard in the last campaign, I would say, in 2016. And it worked in the beginning, and you would see the stock of these companies start going down the second he said pharmaceutical companies are getting away with murder or whatever big comment he was making. But it eventually lost any real effect because there didn’t seem to be plans to do anything drastic.
He talked about potentially doing negotiation, like is happening currently, but then that never came to fruition once he was in office. So I don’t know if that will come across to voters, but certainly the pharma industry doesn’t seem to be as afraid of Trump as what Biden’s doing right now.
Rovner: Jessie, I know Congress is still working on this PBM [pharmacy benefit managers] transparency, big bill. Are we getting any closer to anything? I think members of Congress would also like to run on being able to say they’ve done something about prescription drug prices.
Hellmann: I was just talking to [Sen.] Chuck Grassley [R-Iowa] about this because he is the “OG PBM hater.” And he was like, “Why is nothing happening?” He was just very frustrated. There are several bills that have passed House and Senate committees, and so I think, at this point, it’s just a matter of cobbling them all together, finding ways to pay for things. And since there’s also so many other health care things that people want to get done, it’s a matter of “Do we have enough money to pay for everything? What’s going to save money? What’s going to cost money?”
There’s also these health care transparency measures that Congress is looking at. There’s this site-neutral hospital payments thing that could be a money saver. So I think there’s just a lot going on in trying to figure out how it all fits together. But PBMs, I could definitely see them doing something this year.
Rovner: Sometimes, I mean, often it’s like you can’t get things onto the agenda. In this case, it sounds like there’s lots of things on the agenda, but they’re going to need to pay for all of them and they’re going to fight over the few places where they could presumably get some savings.
Edney: I was going to say, I saw that Grassley and some other senators wrote the Federal Trade Commission because they are due for a report on PBMs they’ve been working on for about a year and a half. And I think that the senators who want to go after PBMs are kind of looking for that sort of backup and that deep dive into the industry to make those statements about cost savings and what this would do for pharmaceutical prices.
Rovner: Well, to ratchet this up one more step, the Biden administration has proposed a framework for when march-in rights might be used. Is this the real deal or a threat to get pharma to back down on complaints about the Medicare price negotiations? Anna, why don’t you explain what march-in rights are?
Edney: March-in rights, which have never been used on a pharmaceutical company, were something that were put into law — I think it was around 1980 with the Bayh-Dole Act — and what it allows the government to do is say we invested a ton of money, either through giving money to university research or in the company itself, to do the very basic science that got us to this breakthrough that then the company took across the finish line to get a drug on the market. But usually, I think the main reason you might use it is because then the company does nothing with it.
Say they bought it up and it could be a competitor to one of their drugs, so they don’t use it. But it seems like it could also be used if the price is prohibitive, that it’s something that’s really needed, but Americans aren’t getting access to it. And so the government would be able to take that patent back and lower the price on the drug. But I haven’t heard a specific drug that they want to use this on. So I don’t know if they’re serious about using the march-in rights.
There is a request for information to find out how people feel about this, how it might affect the industry. The argument being that it could hamper the innovation, but we hear that a lot from the pharmaceutical industry as well. So unclear if that’s a true defense to not using march-in rights.
Rovner: Although march-in rights are a pretty big gun. There’s a reason they’ve never been used. I’ve seen them … lawmakers sometimes trot it out kind of as a cudgel, but I’ve never … the only time I think I saw them come close was after the anthrax scare, right after 9/11, when there was potentially a shortage of the important antibiotic needed for that. There was muttering about this, but then I think the drug company decided on its own to lower the price, which got us over that.
Well, yet another tack is being pursued by Sen. Bernie Sanders, chairman of the Senate Health Committee. He’s going to make the committee vote next week on whether to subpoena the CEOs of Johnson & Johnson and Merck to require them to “provide testimony about why their companies charge substantially higher prices for medicine in the U.S. compared to other countries.” Well, we all know the answer to that. Other countries have price controls and the U.S. does not. So is this a stunt or not? And is he even going to get the rest of the committee to go along with the subpoena?
Edney: This wouldn’t be the first hearing on high drug prices pulling in CEOs. And it’s so opaque that you never get an answer. You never get something … I mean, certainly, they’ll blame PBMs and talk about that, and the finger-pointing will go somewhere else, but you never have some aha insight moment. So when the CEOs are coming in, it does feel a bit more like a show. And Bernie Sanders, the ones he wants to subpoena are from companies that are suing the Biden administration.
So there’s talk about whether that’s sort of a bit of a revenge him for that as well. I don’t know what exactly he would expect to hear from them that would change policy or what legislation they’re trying to work out by having this hearing.
Rovner: For an issue that everybody cares about, high drug prices. It sure has been hard to figure out a way into it for politicians.
Ollstein: We have seen public shaming, even without legislation behind it, can have a difference. I think we’ve seen that on the insulin front. And so I think it’s not completely a fool’s errand here, what Bernie’s trying to do. It will be interesting to see if the rest of the committee goes along with it. There’s been some tensions on the committee. There’s been bipartisan support for some of his efforts, and then others — less on the health front, I think more on the labor front — you’ve had a lot of pushback from the Republican members, and so it’ll be very telling.
Rovner: I was actually in the room when the tobacco industry CEOs came to testify at the House Energy and Commerce Committee, and that was pretty dramatic, but I feel like that was a very different kind of atmosphere than this is. I know everybody’s been trying to repeat that moment for — what is it? — 25, 30 years now. It was in the early 1990s, and I don’t think anybody really successfully has, but they’re going to keep at it.
All right, well, let us turn to abortion. Last Saturday would have been the 51st anniversary of Roe v. Wade, and the day before was the annual March for Life, the giant annual anti-abortion demonstration that used to be a march to the Supreme Court to urge the justices to overrule Roe. Well, that mission has been accomplished. So now what are their priorities, Alice?
Ollstein: Lots of things. And a lot of the effort right now is going towards laying the groundwork, making plans for a potential second Trump administration or a future conservative president. They see not that much hope on the federal level for their efforts currently, with the current president and Congress, but they are trying to do the prep work for the future. They want a future president to roll back everything Biden has done to expand abortion access. That includes the policies for veterans and military service members. That includes wider access to abortion pills through the mail and dispensing at retail pharmacies, all of that.
So they want to scrap all of that, but they also want to go a lot further and are exploring ways to use a lot of different agencies and rules and bureaucratic methods and funding mechanisms to do this, because they’re not confident in passing a bill through Congress. We’ve seen Congress not able to do that even under one-party rule in either direction. And so they’re really looking at the courts, which are a lot more conservative than they were several years ago.
Rovner: Largely thanks to Trump.
Ollstein: Exactly, exactly. So the courts, the executive branch, and then, of course, more efforts at the state level, which I know we’re going to get into.
Rovner: We are. Before that, though, one of the things that keeps coming up in discussions about the anti-abortion agenda is something called the Comstock Act. We have talked about this before, although it’s been a while, but this is an 1873 law, which is still on the books, although largely unenforced, that banned the mailing of anything that could be used to aid in an abortion, among other things. Could an anti-abortion administration really use Comstock to basically outlaw abortion nationwide?
I mean, even things that are used for surgical abortion tend to come through … it’s not just the mail, it’s the mail or FedEx or UPS, common carrier.
Ollstein: Yes. So this is getting a lot more attention now and it is something anti-abortion groups are absolutely calling for, and people should know that this wouldn’t only prohibit the mailing of abortion pills to individual patients’ homes, which is increasingly happening now. This would prevent it from being mailed to clinics and medical facilities. The mail is the mail. And so because abortion medication is used in more than half of all abortions nationwide, it could be a fairly sweeping ban.
And so the Biden administration put out a memo from the Justice Department saying, “Our interpretation of the Comstock Act is that it does not prohibit the mailing of abortion pills.” The Trump administration or whoever could come in and say, “We disagree. Our interpretation is that it does.” Now, how they would actually enforce it is a big question. Are you going to search everyone’s mail in the country? Are you going to choose a couple of people and make an example out of them?
That’s what happened under the original Comstock Act. Back in the day, they went after a few high-profile abortion rights activists and made an example out of them. I think nailing them down on how it would be enforced is key here. And of course there would be tons of legal challenges and battles no matter what.
Rovner: Absolutely. Well, let us turn to the states. It’s January, which is kind of “unveil your bills” time in state legislatures, and they are piling up. In Tennessee, there’s a bill that would create a Class C felony, calling for up to 15 years in prison, for an adult who “recruits, harbors or transports a pregnant minor out of state for an abortion.” There’s a similar bill in Oklahoma, although violators there would only be subject to five years in prison.
Meanwhile, in Iowa, Republican lawmakers who are writing guidelines for how to implement that state’s six-week ban, which is not currently in effect, pending a court ruling, said that the rape exception could only be used if the rape is “prosecutable,” without defining that word. Are these state lawmakers just failing to read the room or do they think they are representing what their voters want?
Edney: I don’t really know. I think clearly there are a lot of right-wing Republicans who are elected to office and feel that they have a higher calling that doesn’t necessarily reflect what their constituents may or may not want, but more is that they know better. And I think that that could be some of this, because certainly the anti-abortion bills or movements have been rejected by voters in places you might not exactly expect it.
Rovner: It feels like we’re getting more and more really “out there” ideas on the anti-abortion side at the same time that we’re getting more and more ballot measures of voters in both parties wanting to protect abortion rights, at least to some extent.
Ollstein: And I think going off what Anna said, I think that anti-abortion leaders, including lawmakers, are being more upfront now, saying that they don’t believe that this should be something that the democratic process has a voice in. The framing they use is that fetuses are an oppressed minority and their rights should not be subject to a majority vote. That’s their framing, and they’re being very upfront saying that these kinds of ballot referendums shouldn’t be allowed, and that states that do allow them should get rid of that. We’ll see if that happens. There are obviously lots of attempts to thwart specific state efforts to put abortion on the ballot. There are lawsuits pending in Nevada and Florida. There are attempts to raise the signature threshold, raise the vote threshold, just make it harder to do overall. But I found it very interesting and a pretty recent development that folks are coming out and saying the quiet part out loud. Saying, “We don’t believe The People should be able to decide this.”
Rovner: Well, obviously not an issue that is going away anytime soon. All right, well that is this week’s news. Now we will play my interview with Sarah Somers, and then we will come back and do our extra credits.
I am pleased to welcome to the podcast Sarah Somers, legal director of the National Health Law Program. She’s going to explain, in English hopefully, what’s at stake in the big case the Supreme Court heard earlier this month about herring fishing. Sarah, welcome to “What the Health?”
Sarah Somers: Thank you for having me, Julie. I’m glad to be here.
Rovner: So this case, and I know it’s actually two cases together, is really about much more than herring fishing, right? It seems to be about government regulation writ large.
Somers: That’s right. The particular issue in the case is about a national marine fisheries regulation that requires herring fishing companies to pay for observers who are on board — not exactly an issue that’s keeping everyone but herring fishermen up at night. And the fishing company challenged the rule, saying that it wasn’t a reasonable interpretation of the statute. But what they also asked the court to do was to overrule a Supreme Court case that requires courts to defer to reasonable agency interpretations of federal statutes. That’s what’s known as “Chevron deference.”
Rovner: And what is Chevron deference and why is it named after an oil company?
Somers: Why aren’t we talking about oil now? Yes, Chevron deference is the rule that says that courts have to defer to a reasonable agency interpretation of a federal statute. So, under Chevron, there’s supposed to be a two-step process when considering whether, say, a regulation is a reasonable interpretation. They say, “Does the statute speak directly to it?” So in this case, did the statute talk about whether you have to pay for observers on herring boats? It didn’t.
So the next question was, if it doesn’t speak directly to it or if it’s ambiguous or unclear, then the court should defer to a reasonable interpretation of that statute. And what’s reasonable depends on what the court determines are sort of the bounds of the statute, whether the agency had evidence before it that supported it, whether it showed the proper deliberation and expertise.
Rovner: One of the reasons that regulations are sometimes 200 pages long, right?
Somers: Exactly. And sometimes courts do say, “You know what? The statute spoke right to this. We don’t have to go any further. We know what Congress wanted.” Other times they take a step further. And the reason it’s called Chevron is it’s named after a case that was decided 40 years ago in 1984 during the Reagan administration, and it was Chevron Inc. USA v. the Natural Resources Defense Council. That case was about a regulation interpreting the Clean Air Act and about regulating air pollution.
Rovner: So, as you point out, you helped write one of the amicus briefs in the case about what overturning Chevron would mean for health care. It’s not just about herring fishing and Clean Air Act. Can you give us the CliffsNotes version of what it would mean for health care?
Somers: One of the purposes of our amicus brief was just to give another angle on this, because we were talking a lot about regulations in the context of air pollution, clean water, and the environment, but it touches so many other things, and this is just one aspect of it. So this brief, which we authored along with the American Cancer Society Action Network, and a Boston law firm called Anderson Kreiger, was signed by other health-oriented groups: the American Lung Association, American Heart Association, Campaign for Tobacco-Free [Kids], and then the American Academy of Pediatrics, American Academy of Public Health.
You get the picture. These are all groups that have a vested interest in programs of the Department and Health and Human Services. The brief talks about regulations promulgated by the Centers for Medicare & Medicaid Services. I’m going to call them CMS for short when we’re talking. And CMS is responsible for regulating the vast and complex Medicare and Medicaid programs. And, as you know, Medicare and Medicaid cover more than half of the population and touch the lives of almost everyone, regulating hospitals, some aspects of insurance, some aspects of practice of medicine.
You can’t escape the consequences of problems with these programs. And so that’s why the agency … Congress specifically gave HHS and CMS the power to regulate all of the issues in its purview. So that already have the power, and so the question is whether they use it wisely. We are arguing in this brief that for 40 years it’s worked just fine. That Congress has set the outer limits and been content to let the agency determine the specifics of these programs to fill in the gaps, as one Supreme Court case said. And this has implications for how hospitals operate, how insurance programs operate, and whether they operate smoothly.
And in our brief, we’re not really arguing for or against a particular interpretation or either for or against what the agency says. It’s just a matter of stability and certainty. The agency has the expertise, has the time, has the resources, and has the duty to figure out what these particular terms and statutes mean and how the programs should work. Just two examples we gave in the brief of the kind of issues that the agency should be determining are: What’s the definition of geographic area in the Medicaid Act for the purpose of setting hospital wages?
If your listeners are still listening, I hope, because that is boring, arcane, hyper-technical, and courts don’t have the expertise, much less the time, to do that. And CMS does. Or another question in a different area, whether feeding activities in a nursing home regulated by Medicaid: Are those nursing or nursing related services? The court’s not going to know. The courts doesn’t have expertise or time. And again, that’s what CMS is for.
So not only is this something that you need these interpretations in these rules to have the programs operate smoothly and consistently, and that’s the first part that’s important. But the second part is that you need consistency across the country. As you know well, there are hospital systems that operate across multi-states. There are Medicaid managed-care plans operating across multi-states. All aspects of health care is nationalized. If you have hundreds of district courts and courts of appeals coming up with different interpretations of these terms, you’re going to have a lot of problems. It’s not going to operate smoothly. So I heard some of the justices arguing, “Well, Congress just needs to do its job.”
Congress has obstacles to doing even the big, mega issues that are before them, these kinds of arcane specific issues. They don’t have the time or again, the expertise. That’s why they said, “CMS, you go do this.”
Rovner: When they were writing the Affordable Care Act, there were so many times in that legislation where it says, “The secretary shall” or “The secretary may.” It’s like, we’re going to punt all this technical stuff to HHS and let them do what they will.
Somers: Exactly. You figure out what the definition of a preventive service is, that’s not something that we are going to do. And there are also questions raised about is this … these unelected agency personnel, well, agencies — they are political appointees, and they also serve at the pleasure of the head of the agency. So they’re accountable to the executive branch and indirectly to the voters. The courts, at this point, once they’re on the court and the federal courts, they’re not accountable to the voters anymore. And so this would be a big shift of power towards the courts, and that is what we argued would be antithetical to the system working well.
Rovner: What would be an example of something that could get hung up in the absence of Chevron?
Somers: I thought that Justice [Ketanji Brown] Jackson, during the argument, gave a really good example. Under the Food and Drug Administration’s power to regulate new drugs and determining what is an adequate and well-controlled investigation. The idea of courts, every single drug that’s challenged in every single forum, having to delve into what that means without deference to the agency would be just a recipe for chaos, really.
Rovner: So some people have argued that Chevron is already basically gone, as far as the Supreme Court is concerned, that it’s been replaced by the major questions doctrine, which is kind of what it sounds like. If a judge thinks a question is major, and they will assume that the Congress has not delegated it to the agency to interpret. So what difference would it make if the court formally overturned Chevron or not here? I guess what you’re getting at is that we’re more worried about the lower courts at this point than the Supreme Court, right?
Somers: That’s right. The Supreme Court has not cited Chevron in something like 15 years. And they talked about that in the argument, but it’s for the lower courts. The lower courts still follow it. It is still very commonly cited and gives them a lot of guidance not to have to decide these issues in the first instance. It’s true that the major questions doctrine — and there are other threats to the power of the administrative agencies, and we should all be concerned about them. But this one is really the grease that keeps the machine going and keeps these systems going. And throwing all that up in the air would make a big difference. If only because the question in all of these Chevron cases, and so many of them was not the ultimate issue — about whether the regulation was a good policy — but the question was, was the statute ambiguous or not? And so that’s the part that would be up in the air and everyone can go back and re-litigate these, including the big interests that have a lot of time and resources to devote to litigation. And that would cause a great deal of uncertainty, a lot of disruption, and a lot of problem for the courts and for all the entities that function under these systems.
Rovner: And that’s a really important point. It’s not just going forward. People who are unhappy with what a regulation said could go back, right?
Somers: Oh yeah. They could go back. They could go to different courts. We’ve seen how litigants can forum-shop. They can find a judge that they think is going to be sympathetic to their argument and make a determination that affects the whole country.
Rovner: Well, we will be watching. Sarah Somers, thanks so much for joining us.
Somers: My pleasure. Thank you for having me.
Rovner: 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. Jessie, you were the first to join in this week. Why don’t you tell us about your extra credit?
Hellmann: Yeah. Mine is from North Carolina Health News. They wrote about how congenital syphilis is killing babies in the state. They had eight cases of deaths last year — compared to a decade ago, they had one. So it’s something that’s been on the rise in North Carolina, but also nationwide, and it’s caused a lot of alarm among public health officials because it’s pretty preventable. It’s something that doesn’t need to happen, but the story is about what the state is doing to improve their outreach to pregnant people. They’re doing media campaigns, they’re trying to make sure that people are doing their prenatal care and just trying to stop this from happening. So I thought that was a good story. It’s definitely kind of an under-reported issue. It’s something that public health officials have been raising an alarm about for a while now, but there’s just not enough funding or attention on the issue.
Rovner: For all the arguing about abortion, there’s not been a lot of discussion about maternal and child health, which obviously appears to be the one place that both sides agree on. Anna.
Edney: Mine’s in The New Yorker by Rachael Bedard. It’s “What Would It Mean for Scientists to Listen to Patients?” And it’s interesting, it’s about two Yale researchers who are doing a long-covid study, but it’s unique in the sense that when the CDC or anyone else does a long-covid study, they typically are trying to say, “Here are the exact symptoms. We’re going to work with 12 of them.” Whereas we know long covid, it’s seemingly a much more expansive symptom list than that, but researchers really like to have kind of metrics to go by.
But what these Yale researchers are doing is letting all of that go and just letting anybody in this and talking to them. They’re holding monthly town halls with people who are in this, whoever wants to show up and come and just talk to them about what’s going on with them and trying to find out, obviously, what could help them. But they’re not giving medical advice during these, but just listening. And it just was so novel, and maybe it shouldn’t be, but I found it fascinating to read about and to get their reactions. And it’s not always easy for them. I mean, the patients get upset and want something to happen faster, but just that somebody is out there doing this research and including anybody who feels like they have long covid. It was really well-written too.
Rovner: It’s a really good story. Alice.
Ollstein: So I’m breaking my streak of extremely depressing, grim stories and sharing kind of a funny one, although it could have some serious implications. This is from Stat, and it’s from an inspector general report about how the White House pharmacy, which is run by basically the military, functioned under President Trump. And it functioned like sort of a frat house. There was no official medical personnel in charge of handing out the medications, and they were sort of handed out to whoever wanted them, including people who shouldn’t have been getting them. People were just rifling through bins of medications and taking what they wanted. These included pills like Ambien and Provigil, sort of uppers and downers in the common parlance. And so I think this kind of scrutiny on something that I didn’t even know existed. The White House pharmacy is pretty fascinating.
Rovner: It was a really, really interesting story. Well, I also have something relatively hopeful. My extra credit this week is a journal article from Health Affairs with the not-so-catchy headline “‘Housing First’ Increased Psychiatric Care Office Visits and Prescriptions While Reducing Emergency Visits,” by Devlin Hanson and Sarah Gillespie. And if they will forgive me, I would rename it, calling it maybe “Prioritizing Permanent Housing for Homeless People Provides Them a Better Quality of Life at Potentially Less Cost to the Public.”
It’s about a “Housing First” experiment in Denver, which found that the group that was given supportive housing was more likely to receive outpatient care and medications and less likely to end up in the emergency room. The results weren’t perfect. There was no difference in mortality between the groups that got supportive housing and the groups that didn’t. But it does add to the body of evidence about the use of so-called social determinants of health, and how medicine alone isn’t the answer to a lot of our social and public health ills.
OK. That is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks as always to our technical guru, Francis Ying, and our editor, Emmarie Huetteman. 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 or @julie.rovner at Threads. Anna, where are you these days?
Edney: Mostly just on Threads, so @anna_edneyreports.
Rovner: Alice?
Ollstein: @AliceOllstein.
Rovner: Jessie.
Hellmann: @jessiehellmann on Twitter.
Rovner: We will be back in your feed next week. Until then, be healthy.
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KFF Health News' 'What the Health?': The Supreme Court vs. the Bureaucracy
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Julie Rovner
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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.
The Supreme Court this week took up a case brought by two herring fishing companies that could shake up the way the entire executive branch administers laws passed by Congress. At stake is something called “Chevron deference,” from the 1984 case Chevron v. Natural Resources Defense Council. The ruling in that case directs federal judges to accept any “reasonable” interpretation by a federal agency of a law that’s otherwise ambiguous. Overturning Chevron would give the federal judiciary much more power and executive branch agencies much less.
Meanwhile, the Biden administration is struggling with whether to ban menthol-flavored cigarettes. Among smokers, African Americans consume the product at the highest rate, and the African American community is split, with some groups arguing that a ban would improve public health and others worried that making the product illegal would give police another excuse to harass black people.
This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of Johns Hopkins University and Politico Magazine, Lauren Weber of The Washington Post, and Rachel Cohrs of Stat.
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Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico
Rachel Cohrs
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Lauren Weber
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Among the takeaways from this week’s episode:
- Congress looks ready to pass yet another temporary spending bill to keep the federal government running — this one extending to March. But it’s unclear whether all the health policies that have been attached to previous temporary “continuing resolutions” will continue to make the cut while lawmakers struggle with full-year funding issues.
- A grand jury in Ohio declined to indict Brittany Watts, who was charged by authorities with “abuse of a corpse” after having a miscarriage at home. The case underscores how women can be at legal risk for their pregnancy outcomes even in states where abortion remains legal.
- Also in Ohio, state pharmacy officials are moving to fine and place on probation a CVS store in Canton after inspectors determined that understaffing was threatening patient safety. In at least one case a patient was given a drug other than the one prescribed, and waits to fill some prescriptions stretched to a month. Ohio is also investigating other CVS locations in the state to ensure staffing is adequate.
Also this week, Rovner interviews Darius Tahir, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” about a lengthy fight over a bill for a quick telehealth visit. If you have an outrageous or baffling medical bill you want to share with us, you can do that here.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: Stat’s “Pumping Milk at JPM Was a Nightmare. It’s Part of a Bigger Problem in the Industry,” by Tara Bannow.
Joanne Kenen: Undark’s “Why Incentives to Attract Doctors to Rural Areas Haven’t Worked,” by Arjun V.K. Sharma.
Lauren Weber: The Guardian’s “Majority of Debtors to US Hospitals Now People With Health Insurance,” by Jessica Glenza.
Rachel Cohrs: The Washington Post’s “Republican Governors in 15 States Reject Summer Food Money For Kids,” by Annie Gowen.
Also mentioned on this week’s podcast:
- The Washington Post’s “White House Weighs Menthol Ban Amid Dueling Health, Political Pressures,” by Dan Diamond and Tyler Pager.
- The Ohio Capital Journal’s “Ohio Attorney General Asks That CVS Store Be Put on Probation ‘for a Period of Years,’” by Marty Schladen.
- The Atlantic’s “The Supreme Court Is Making America Ungovernable,” by Lisa Heinzerling.
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Transcript: The Supreme Court vs. the Bureaucracy
KFF Health News’ ‘What the Health?’Episode Title: The Supreme Court vs. the BureaucracyEpisode Number: 330Published: Jan. 18,2024
[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, Jan. 18, 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 Lauren Weber of The Washington Post.
Lauren Weber: Hello, hello.
Rovner: Joanne Kenen of Johns Hopkins University and Politico Magazine.
Joanne Kenen: Hey, everybody.
Rovner: And Rachel Cohrs of Stat News.
Rachel Cohrs: Good morning.
Rovner: Later in this episode, we’ll have my interview with my colleague Darius Tahir, who wrote the latest KFF Health News-NPR “Bill of the Month” about an unexpectedly large bill for a simple telehealth appointment. But first, this week’s news. So we’re a day away from the next deadline for Congress to pass a spending bill or else big chunks of the federal government shut down. In other words, the “let’s kick the can down the road a few more weeks and see how many spending bills we can get done” deadline is now here, again. So how many spending bills did Congress get done between — what, the end of November, the last time we did this — and now? Rachel, I see your eyes are rolling.
Cohrs: Yeah, I don’t think we have any actual appropriations in that time frame. I think there was just a lot of back-and-forth, not a lot of actual progress. So I think they’ve decided to kick the can down to March. As we’re taping in the morning, the Senate is scheduled to pass the CR [continuing resolution] to keep that two-pronged approach moving into early March, but extensions of health care programs in Medicaid and Medicare have been pushed now to the second March deadline, so those are expected to come up on March 8, right now.
Rovner: So remind us what those are. I saw you very helpfully have a story about it this morning.
Cohrs: I do, yes. Fresh from the trenches on that. So there were a number of health care programs that expired at the end of 2023, including payments for safety-net hospitals, including pandemic-era bonuses for doctors, for their Medicare pay. We also have funding for community health centers and multiple demonstration projects, programs for diabetes and other public health issues. So those are commonly known as extenders. They do just expire on a regular basis. We had a three-year term, but now we’re at the end of it.
Rovner: And they need to be extended. Hence, they’re called extenders.
Cohrs: They do need to be extended, yes. So Congress did take care of most of those items in the CR from September time frame, but they did not extend the bonus payments for doctors. So there were some very tense negotiations late last week where Republicans were really pushing to add those payments back into the extenders package as it sits right now, but those negotiations broke down and so what we’re seeing today, tomorrow, is just an extension of the same baseline and doctors are still without those increased payments.
Rovner: Right. That’s the Medicare cut that we talked about last week, actually, with the head of the AMA [American Medical Association].
Cohrs: Yeah, it’s controversial because it was … long story, but …
Rovner: There’s also a 3.7% actual cut and that’s still in effect, right? That’s not being taken care of?
Cohrs: No, that’s not being taken care of. I think if Congress doesn’t fix things, to my understanding, some specialties will see a cut, other specialties will see an increase, and there’s an across-the-board cut, though, because in the middle of the pandemic, Congress did not want to cut any doctors’ payments, so that was an increase on top of the kind of baseline amount. So when you’re saying cut, they’re kind of going back to the normal baseline for some physicians. Others are seeing that deeper cut because of some Trump-era rules and the conversion factors there.
Rovner: Yes. Medicare doctor payment, we’ll spend a whole episode on this at some point, but not today because we have something else confusing to take on. The award for incomprehensible health policy this week goes to the Supreme Court, who heard arguments Wednesday in two cases, Relentless Inc. v. the Department of Commerce and Loper Bright Enterprises v. Raimondo, i.e., Gina Raimondo, the secretary of Commerce. What is at stake here is not the merits of these cases — they are about fees paid by herring fishing boats — but whether the court should overrule something called Chevron deference, which is the policy that courts should defer to executive branch agency interpretations of ambiguous laws as long as that interpretation is reasonable. I know this sounds wonky, and it is wonky, but if the court overrules Chevron, it could have enormous ramifications for health policy, yes?
Kenen: Pretty much anything that has ever been regulated. That’s only a slight exaggeration. I mean, we don’t know what the court is going to do. We can expect that the court will trim, at least, Chevron, but we don’t know how far the court will go.
Rovner: Right. They didn’t have to take this case and the fact that they took it suggests they want to do something.
Kenen: They’ve been more than chipping away. We sort of get to that in a minute, but basically the question is when Congress doesn’t have the expertise that civil servants and agencies have, or in some cases, political appointees and agencies have. They are professionals who work in health care or the environment or herring fishing. They know more than even the smartest Congress person about their field of expertise, and traditionally Congress makes laws and tells the agencies to fill in the blanks, to do the regulations, to work out the details, figure out how this is going to work in the real world, and then everybody sues everybody else.
Chevron has basically said yes, the agencies can make up the rules. There are thousands of court cases and rules. It’s throughout the government, everything federal, so it’s not very hard to guess that Chevron will be changed. The question is: Will it be gutted? And who writes the regs? Or can Congress just put in language saying, “And we explicitly authorize the EPA or HHS or CMS, whatever, to fill in the blanks.” We don’t know how this plays out, but it’s messy.
Rovner: Obviously there are lawsuits that happen all the time anyway, even with Chevron, it’s just that Chevron is supposed to say when a judge gets a complaint in front of him saying “this regulation is contrary to what the law said,” the judge gets to decide whether or not it’s a reasonable interpretation. So it’s not like judges can’t overrule the agencies. It just says, in general, the weight should go towards the agency. Lauren, you wanted to add something?
Weber: Yeah, I just wanted to say I think this is relevant to the conversation we had just before this, because what this is aimed at doing is putting the power back in the hands, both of the courts and the Congress, but as we’ve just discussed, Congress is having a hard time passing things. So this is all part of the movement, in general, by conservatives to strip the administrative state, as they like to call it. And as Joanne pointed out, it’ll be quite interesting to see how this all plays out.
Rovner: Yes, and my favorite factoid about this case is that the lawyers who are representing the herring fishermen are being paid indirectly by Americans for Prosperity, the Koch Brothers, interest group that’s basically aimed at weakening the power of the regulatory state. It isn’t even very subtle here. Yes, Joanne?
Kenen: There’s been a lot of focus on Chevron, but there’ve been a number of cases that have already weakened Chevron without calling it weakening Chevron. I interviewed a lawyer, a law professor at Georgetown about a year ago, and she also wrote about a year ago a very good piece in The Atlantic that Julie couldn’t put on the notes. Her name is Lisa Heinzerling, I think it’s Heinzerling, and basically she said they’ve already really gutted Chevron. And the three cases, one was the EPA clean air case, power to regulate, and two were covid-related. One of them was the vaccine mandates for the workplace, and the court basically ruled that the agencies didn’t have the right to make those decisions.
What professor Heinzerling said, it’s called the major decision [questions] doctrine, that if it’s a really big thing, the agency can’t do it. Congress has to or the courts have to, and those big things include things like clean air. So, in her view, the major [questions] doctrine has already really gutted the agency’s power and made it harder to govern because, as she pointed out, it takes years to get a rule passed. She worked at the EPA, and it’s a very complicated, careful, long process and she basically said it’s another way of making the country ungovernable at a time when we have lots of things that need governing.
Rovner: To give myself a little plug here, I did basically a policy tracker at the beginning of the Biden administration tracking how long it was going to take [President Joe] Biden to undo a lot of the regulations and policies that the Trump administration put in, and I just updated it again last week when we talked about the conscience rule. It literally does take years for these things to happen. I mean, one presidential term is barely enough time to change the policies of the previous president, and I will link to my regulation tracker because somebody should look at it.
All right, well, moving on. I want to talk about an issue I’ve had on my podcast rundown since sometime last fall, but have never managed to get to, which is a proposed ban on menthol-flavored cigarettes. From a public health perspective, this is kind of a no-brainer. Menthol makes cigarettes smoke more palatable to smokers and, therefore, smokers smoke more, but it turns out to be super sensitive politically because African Americans are far more likely to smoke menthol cigarettes than any other group, and African American leaders themselves are split on whether such a ban would help or hurt. What are the arguments for and against this? Lauren, you’ve been kind of watching this, yes?
Weber: Yeah. Shoutout to my colleagues Dan Diamond and Tyler Pager who wrote a great story on this last week, but essentially the arguments for and against is menthol cigarettes are a leading cause of death for Black Americans. They’ve been historically marketed to the Black American community. What menthol does is it has a cooling effect when you smoke, so it makes it more enjoyable. As a smoking issue, you saw similar regulation issues come up when we talked about vaping regulation to different flavors, which also had similar backlashes when Donald Trump considered it, and actually when I was at KHN [KFF Health News], I got to write a story with Rachel Bluth about this where we talked about how Donald Trump really got gun-shy on this to some extent because he was worried about the voter implications. And we’re seeing that play out again right now because what is happening is that the tobacco lobby is telling Biden that he’s going to lose a large chunk of Black voters, which, as we are very clear, the 2024 election looks like it’s going to be quite tight, so that has real ramifications.
What’s interesting is that lobbying effort is obviously led by the tobacco companies, which have had a history of tactics and propaganda when it comes to preventing regulations that we’re all very well aware of, but they have rallied up quite a few folks in their favor, including some Black congressmen who have cited what the tobacco companies are telling them, which is that they’re concerned that this is targeting Black Americans, because why aren’t we just killing all cigarettes? Why are we just killing menthol cigarettes? That it also could lead to over-policing, which could lead to violence against Black Americans. This is the argument that the tobacco companies and their advocates are making. But the bottom line is really what this boils down to is I think the most effective argument that they’re making to the Biden administration is it could hurt your reelection chances.
To look ahead, the real deadline on this taking effect that all the advocates have been pointing to is Jan. 20, which, if you look at your calendar, is Saturday. So it’s not looking great for the promises to the advocates that this could happen in the Biden term. It’s unclear, still a toss-up. Dan Diamond reported that while the administration sees it as a toss-up, Robert Califf, who’s head of the FDA, is pretty resigned to it not happening, which to me seems to indicate, considering we are almost to the 20th, that it may not happen, but by the time this podcast airs, I could be wrong. So we will see how this plays out.
Cohrs: I just wanted to say that I think if you look at the OMB [Office of Management and Budget] regulatory schedule, they do have meetings on this rule scheduled out through mid-February, so could they cancel this tomorrow? Sure, and put it out, but at least what they’re saying publicly, it looks like they’re not planning to put that out tomorrow.
Rovner: Right, and I would say the deadline, it’s not technically a deadline, but what the agency has said is that it will take a year to basically, as we were just talking about, it takes a long time for regulations to become final, and Jan. 20 of 2025 is Inauguration Day. So if Biden were to not get reelected and they were to start this, it would be very easy for Trump or whoever else gets elected to stop it. Joanne, you wanted to add something.
Kenen: One point, though: This is an issue that’s been on the back burner, front burner, back burner, but it’s been 20, 30 years now, 20, 25-ish maybe? There has been a shift in that, I don’t remember whether it’s an official Black Caucus stance or just an informal … where the Black lawmakers in Congress had been opposed to the ban for the reasons, discriminatory, black market, it would hurt people as well as hurt some, help others. There’s now a split and that is a change. So whether there’s action this week, there is movement on it and, like we said, everything takes a long time, 25 years, but there has been movement on it, and it’s also a little bit more vivid who’s using tobacco dollars and who isn’t. So the public health needle has moved, maybe not in time for this year, but let’s see what happens next year. I mean, if it goes away now, it doesn’t go away for good.
Rovner: Lauren?
Weber: I think that’s a great point by Joanne that I just want to echo. This reminds me a lot … there was a story that The Post did in December where Peter Wallsten interviewed all of these lawmakers who voted against the AR-15 ban, and they talked all about how, if they could go back in time, they wished they had voted for it. They regret that political decision that they made due to the voter piece of this, and I do wonder if Biden is grappling with that similar longevity of, like, this would be a landmark public health ruling, this would be quite something that really would be protecting lives, but is it worth the voter cost? I think that, to me, is where this lies. But as Joanne said, I mean, this is not dead forever if this dies this week. It certainly has made progress.
Rovner: It’s a really interesting issue though. All right, well, speaking of smoking, the Department of Health and Human Services is recommending that marijuana be removed from the DEA’s [Drug Enforcement Administration’s] list of drugs with no medical use and a high potential for abuse, the so-called Schedule 1 drug. Instead, the department is saying it should be placed on Schedule 3, which are with drugs that can be abused but can also be helpful, like anabolic steroids and ketamine. Given that medical marijuana is now legal in 38 states and recreational marijuana is legal in 24, isn’t this just kind of recognizing reality?
Kenen: I mean there’s been pressure for years. I mean, Schedule 1 is heroin. It’s hard to make the case now that marijuana is as harmful as heroin or other Schedule 1 drugs. The FDA isn’t ready to say it should be completely unscheduled and just do whatever you like, but there’s a big difference between a 1 and a 3, and there’s a lot of gaps between federal law, including things that involve financing for the marijuana industry or the cannabis industry. So there’s a lot of gaps still between state law and federal law, but this is a partial closure of one of those many gaps. And it’s a recognition that, not just a political and social reality, but also a science reality. I mean, even if you’re not crazy, if you’re not that sanguine about marijuana, it’s still hard to make a case that it’s as dangerous as heroin. It’s not.
Rovner: “Reefer Madness” was a long time ago.
Kenen: Yeah, but it had a long tail.
Rovner: It did. Well, among the recognized uses for marijuana are to help combat nausea caused by chemotherapy and for stimulating appetite in patients with AIDS. Meanwhile, a kind of provocative study out this week from the University of Colorado found that weed can actually motivate people to exercise, which seems kind of the polar opposite of the idea that it just turns people into slackers and couch potatoes. Now that we have drugs that can help make people not hungry, how big a deal would it be to have another one that actually helps people exercise? I mean, I assume that there are a lot of things about marijuana that we don’t know, both good and bad.
Kenen: Julie, after you sent that around yesterday, I read that article, and there’s a lot of problems with that study. I mean, it was all people who smoke marijuana when they run or ingest it. So it wasn’t a scientific gold standard. I mean, if you ask a bunch of people, “Oh, do you like running high?” and they say “Yes,” and then say, “OK, do you want to be in our study about running high?” [laughs]
Rovner: In Colorado, where recreational marijuana has been legal for several years.
Kenen: I mean, there’s still a lot of unknowns. If you talk to the proponents of medical marijuana, they’ll tell you it cures everything. And I think all of us would be somewhat skeptical that marijuana cures everything. I’m not convinced that exercise motivation thing is … I mean, I could be persuaded, but that study didn’t persuade me.
Rovner: My point, though, is that, I mean one of the things that had been difficult over the years is that it had been hard to actually get marijuana to do medical studies like this. There was only one place that grew it. I think it was in Mississippi.
Kenen: In Mississippi, and it was really poor quality.
Rovner: Right. So I mean now we can at least presumably have better-quality studies on these kinds of things, right?
Kenen: I don’t think it’s great. I think it’s better.
Rovner: I said we can have, not that we do have.
Kenen: I mean someone else might know more. I read about this and I can’t remember the details now and maybe Lauren or Rachel remembers better than I do, but it’s not just from Mississippi, but it’s not from everywhere. There’s more supplies for medical, but I don’t think it’s abundant and perfect.
Rovner: But I think that’s one of the things that changing the schedule would actually help fix that, actually taking it off of Schedule 1 with heroin, as you point out, and putting it on Schedule 3 with other things that have been studied and have been found to have some medical uses. So another thing that we shall watch. Well, turning to abortion, a grand jury in Ohio decided not to indict Brittany Watts, who miscarried at home after being turned away from the hospital only to have one of the nurses there call the police. Officials in Warren, Ohio, wanted to try her for a crime called “abuse of a corpse.” We talked about this the last two episodes. Mind you, Ohio is a state that just voted to enshrine abortion rights in its constitution, and this was not an abortion. But I imagine this goes down in the “no matter where you live, you’re at legal risk for pregnancy loss” column, right? I mean, it does seem to be kind of ominous that there are still officials who still want to criminalize basically pregnancy loss, however it happens.
Weber: Yeah, I mean, I’ll chime in on this. I mean, this case has been watched by folks not only in this country but around the world because, just to remind the audience, Brittany Watts, she was miscarrying and was sent home from the hospital and what happened is that she miscarried into a toilet at home and law enforcement took the drastic steps of retrieving the fetus from the toilet to then charge her with this “abuse of a corpse” law statute after the hospital, by the way, had also clearly consulted with its legal team over what the appropriate action to cover the hospital was. Not to cover the patient but to cover the hospital.
So she miscarried at home. Then this very ancient law statute was pulled out, and I mean, we don’t know how many law statutes like this over what’s called “abuse of a corpse” exist. Legally, it’s also “Is a fetus a corpse?” — was that debate as well in this case? I mean, I think we’ll see what happens across the country, but yes, Julie, I think you’re correct that this is very concerning for women across the country who could have a miscarriage at home. Could you be legally liable for not handling that as some activist prosecution would prefer that you do?
Kenen: Right. I think in this case, she’d been into the ER and out a couple of times, and I think the last time she wasn’t discharged, she just left. But most miscarriages are very early in pregnancy and it’s an embryo. It’s not even a fetus yet, and it’s tiny. So how do you even define what a corpse is? Do you even know that you were pregnant? Losing a pregnancy is a trauma. It’s a medical condition and it’s a trauma. What happened to her, she lost a pregnancy. She had been in and out of the hospital. She didn’t feel like her needs were being met there. That’s why she left. There was a lot of confusion about what to do. There was no confusion that this was a naturally occurring miscarriage, a premature rupturing of her membranes. Nobody, including the nurse who called the cops, nobody said that she’s trying to do a self-abortion or that she’s doing anything illegal. She had a pregnancy loss.
Rovner: There was a medical examiner report that said …
Kenen: Yes.
Rovner: … this was a stillborn.
Kenen: Right. I don’t think people necessarily know what to do if you …
Rovner: Nor can you imagine should they know what to do. I mean, it’s not like she didn’t follow standard procedure. There is no standard procedure for this. Speaking of people in states where abortion is still legal, still having to pay attention, in Texas, the district court judge who tried to overturn the FDA’s approval of the abortion pill, mifepristone, granted a motion allowing Idaho and Missouri to intervene in the case, which the Supreme Court agreed to hear last month. This could be a big deal because it means that even if the original plaintiffs in the case, which is a group representing anti-abortion obstetrician-gynecologists is found not to have standing, which seems likely, according to most experts, it’s not clear that they are harmed in any way by mifepristone. The states will still be there to keep the case active. Although how the states are harmed by mifepristone is also kind of a stretch. I feel like the anti-abortion forces in these states just aren’t paying attention to the voters, and I guess they don’t have to. I mean, I think this and the Brittany Watts case sort of suggests that even if abortion is legal, even if the voters have spoken, there are still officials who think that it is their obligation to push their anti-abortion views as far as they can.
Kenen: I mean, we see how the elections have gone in every state that’s had a ballot initiative, and we haven’t seen the anti-abortion forces say, whoops, we lost and go home. I mean, they still have the Supreme Court ruling. They still have plenty of momentum. They’ve got a federal election, they’ve got a presidential election coming up, and it’s not going away, and they’re not the will of the voters. I mean, to be fair, many of them do believe that this is murder and that they’re morally obligated to keep fighting. I mean, if you want to acknowledge that, that that’s the belief for many, not necessarily all people on the … there are people who are doing it for political reasons too, but there are people who sincerely believe that they’re morally obligated to keep fighting this even if the voters have not been enlightened to the truth.
Rovner: All right. Well, finally this week, a continuing story out of Ohio that speaks to some of the serious issues with the health care workforce. The state Board of Pharmacy is recommending that a CVS pharmacy in Canton be fined and put on probation after inspections found dangers to patients from understaffing. According to the Ohio Capital Journal, which has been following this story pretty closely, inspectors found the understaffing so severe that it was taking two weeks for prescriptions to be filled and in at least one case a prescription was filled for the wrong medication. During an on-site inspection, the inside counter was closed, medications hadn’t been shelved, and it took an inspector 20 minutes just to get a staffer’s attention.
The Canton store is one of eight CVS pharmacies in the state to have been cited by the board. Now, we’ve heard similar stories, not just about CVS and not just about CVS in Ohio, but about Walgreens and other chain drugstores. Are regulators finally catching up with some of the anecdotal reports that we’ve been seeing about the stress that’s happening at the pharmacy counter?
Cohrs: I think this was a good example of a response to that, and Ohio has been on the front end of looking into pharmacies and the drug supply chain, so I think they are pretty well equipped to look into an issue like this. But I think it starts to quantify and just build the case that this does have patient impacts. It’s not just a little bit of a longer line. I mean some of the wait times for these medications — two weeks, a month. Just imagine going to the pharmacy and being told to wait a month for medication. It can be really problematic for patients. So I think, certainly, it’s not surprising to me that Ohio is kind of on the front end of this and it certainly could be the beginning of more enforcement if officials have the bandwidth to do it.
Rovner: I know. I guess the issue here is the pharmacists said during the pandemic that obviously it was a pandemic, they were having trouble getting people. They were being asked to do other things, which they still are, like give vaccines. And not just covid vaccines, it’s “now go get your shingles shot, go get your flu shot.” Everybody’s being pushed to these pharmacies and they’re not necessarily increasing staff to deal with the increasing workload. There is a point at which it starts to endanger patients, and we’re starting to see that point.
Kenen: Also they get paid for some of that, right? I mean they get paid for doing shots. And it’s not super, super labor-intensive. You have your technicians who know how to do it, you can do it pretty fast. And one reason that pharmacies do want to give shots is when you come in and you get your shot, you also end up picking up shampoo or whatever. So I mean it’s a way of getting people in the stores. There’s sort of different issues with pharmacies. I mean, I personally have had more than one time where I’ve been given the wrong medication. I look, and not only that, I don’t want to identify which pharmacy, they gave me the wrong one and I said, “This is the wrong one,” and they said, “Whoops, sorry, come back in an hour,” and I came back in an hour and they gave me the same wrong one. So I’ve never walked back in there again. I think there’ve been a number of reports, not as egregious as Ohio and CVS, about the pressure on the pharmacy techs and that they’re not enough of them, and I don’t know enough about the insides of that. Is it that there are not enough of them to hire because there’s a shortage or are the company’s not hiring enough of them and it’s working them to death? Not literally, but squeezing as much.
Rovner: Doing it for the bottom line.
Kenen: I mean we all probably have our theories. This is a relatively newish problem of the pharmacies being this overworked and we’ll be hearing more of it.
Weber: Yeah, I just want to add, I mean, Julie, you talked about the bottom line, and we’ve talked about on this podcast, I think two weeks ago, that study that came out about how private equity-run hospitals have less staffing and have higher patient errors. You can’t help but wonder if there’s some parallels here in the pursuit of profits possibly over patients.
Rovner: We’ve seen pharmacists at some of these chain stores basically say that, the ones who are there. Well, while we were talking about health workforce woes, Joanne, your extra credit speaks to this. So why don’t you go ahead and do it right now?
Kenen: Mine is an essay in Undark by a physician named Arjun Sharma and it’s called “Why Incentives to Attract Doctors to Rural Areas Haven’t Worked.” All of us know that there’s still a shortage of physicians and other health care workers, nurses, and everything else, probably pharmacists, in rural areas. I didn’t realize that the problem had actually been identified as far back as Teddy Roosevelt’s administration. Most of the efforts to resolve it actually were around 1965, when Medicare was passed and there was an official designation of these underserved areas. Basically, nothing has really worked, and this physician, Dr. Arjun Sharma, talked about the incentives. It’s not about money. That giving people loan forgiveness or extra pay to move off to this unknown rural life, temporarily or permanently, we know it doesn’t work because we’ve been doing it for 50, 60 years and it doesn’t work. He said his own experiences of having gone to a rural area is that he ended up loving the practice of medicine. He loved seeing patients in his community. He loved the different kind of interactions, and that he thought that was the way you might be able to pay someone to quit smoking, but getting somebody to go practice out in the middle of nowhere, you have to talk about why it’s wonderful and satisfying. And that the misconception is not that you’ll get money for going to the rural areas. The correct approach should be you’ll get satisfaction from practicing in a rural area.
Rovner: This is obviously another of the continuing mismatches in the U.S. health care system, such as it is. All right, well that is this week’s news. Now we will play my interview with Darius Tahir about the “Bill of the Month” and then we’ll come back and do our extra credits.
I am pleased to welcome to the podcast my colleague Darius Tahir, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Darius, thanks for joining us.
Darius Tahir: Thanks for having me.
Rovner: So, this month’s patient did what a lot of us do in her situation. She didn’t feel well, thought she needed a professional consult, but it wasn’t really an emergency and, fearing it was covid or something else contagious, she booked a telehealth visit. Tell us some of the particulars of what happened here.
Tahir: So in fall of 2022, Elyse Greenblatt, a Queens, New York, resident, came back from a trip in Rwanda with a little sinus trouble. She thought it was covid but couldn’t rule it out, and so she’s like, “Why don’t I book a telehealth visit through my usual health system, Mount Sinai in New York City, just see what a professional opinion is like?” She had a very quick visit, as she remembers, and simply got prescribed some Flonase and some antibiotics. Sort of left it at that for a while.
Rovner: Which seems typical for …
Tahir: Very typical.
Rovner: So then as we say, the bill came. Now lots of insurers recommend telehealth, and lots of telehealth services compete on price. But that’s not what happened here, right?
Tahir: Right, absolutely. She looked in and saw that the app that she booked through, Mount Sinai’s personal record app, estimated a cost of $60 for a visit. That’s a competitive cost for a telehealth visit, I would say, an urgent care visit, but as it turned out, the doctor was out of network according to her insurer, Empire BlueCross BlueShield, and she ended up getting a bill of $660, which is way outside the average of this kind of telehealth urgent care visit.
Rovner: And this wasn’t anything fancy, right? This wasn’t like the doctor had to take this full medical history or anything?
Tahir: No, it was just, as she remembers, a very quick five-minute, 10-minute type visit and turned out to be very expensive because of the out-of-network nature of the visit.
Rovner: And, of course, this is exactly what the No Surprises bill was for — when you go to an in-network hospital and get a bill from an out-of-network doctor. Shouldn’t this have been considered a surprise medical bill?
Tahir: That’s a great question. So, as you mentioned, there was the [No] Surprises Act, which is a law that prevents patients from getting bills that are surprises to them, right? If you’re in a hospital, you kind of assume everybody’s in network, but maybe the anesthesiologist is out of network, in this case, Greenblatt usually goes to Mount Sinai and, usually, those doctors are in network. The problem is the specific doctor she saw in telehealth, who was provided to her luck of the draw, is out of network. So she gets hit with a big bill, $660, and goes on to protest it with the medical system. They’re kind of giving her the runaround.
Eventually, I hear about this story, and I’m like, OK, well I’ll ask some questions with Mount Sinai’s PR people. They eventually provide me with a form, a consent form, that consents to out-of-network charges. What’s kind of curious about this bill, and it’s both kind of legally curious and we’ll say ethically curious, is that both the bill and her medical record have time stamps about when the activity occurred. So she signs it one time, the medical record says another time, slightly earlier, than when the visit occurred. So you would think on its face that the consent was signed after the visit occurred. Now that’s a little weird that you’re suddenly getting a form after everything in the visit is happening.
Rovner: I mean, the bottom line here is that you’re supposed to consent in advance, not after the fact.
Tahir: In advance, exactly, yeah. It’s not just something that strikes you as normal, this is how business should be done, but it’s an interesting legal distinction as well. As you mentioned, you’ve got the No Surprises Act, which is a bill that’s supposed to protect us from surprise bills that we don’t expect, and one of the requirements of the bill is that if you do do this consent, it’s provided in a timely fashion. The other one is that if you go through a hospital where you’re covered, then there should also be coverage there because sometimes the hospital is covered, but the doctors within the hospital are not necessarily covered. And in this case, the doctor was not necessarily covered, even though she goes to the hospital system quite regularly and her services are generally covered there.
Rovner: Also, doesn’t the law say if you’re going to get out-of-network care, they have to tell you before you get the care?
Tahir: Precisely. So that is one of the requirements of the No Surprises Act, and the Mount Sinai PR person I spoke to said this is a little non-standard. This is kind of an exception, if it did happen. So, still, there’s a little bit of a loophole in the No Surprises Act. I spoke to a lawyer who was an expert in the No Surprises Act, and one of the things she pointed out about the bill is that you can’t really tell necessarily who’s putting in the bill, what entity, right? Is it the hospital? Is it some other entity? The No Surprises Act covers this laundry list of entities, including hospitals, including some outpatient facilities, but in this case, she couldn’t really tell what entity was billing Greenblatt and therefore couldn’t tell how that fit into the No Surprises Act scheme.
Rovner: And whether that entity was actually covered by the No Surprises Act.
Tahir: Precisely. So that’s kind of where we’re left.
Rovner: What eventually happened with the bill?
Tahir: It’s kind of still unpaid and unresolved more than a year after the actual service was rendered, so it’s kind of still in limbo.
Rovner: After a year. What can patients do to prevent this from happening to them? I mean, it sounds like this patient did everything right.
Tahir: Right. I guess you got to check and see that your doctors are always in network, as amazing as that sounds. Check the forms that you get, even though they’re often tons of them, there’s a HIPAA form, there are all these forms you get. I guess you’ve just got to be careful what you sign and pay attention to what you sign. Even though oftentimes when you’re going to the doctor, it’s an incredibly stressful time, yourself might be sick, a loved one might be sick, it’s tough to say, but you’ve got to pay attention to the fine print when you’re going ahead with this care, as incredible as that sounds.
Rovner: It’s not like it used to be. Darius Tahir, thank you so much.
Tahir: Thank you.
Rovner: OK, we are back. 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. Joanne, you’ve already done yours. Lauren, why don’t you go next?
Weber: Yeah. Mine is a piece in The Guardian by Jessica Glenza titled “Majority of Debtors to US Hospitals Now People With Health Insurance.” I think this is something that everyone on this panel knows, but I think it’s just a striking, if you take a step back and look at it, the concept of insurance for the average American would seem to think that would insure you from bad debts and from hospital debt. I think studies like this and stories like this are a good 10,000-foot-step-back reminder that this system is very broken and not working the way it should. So I think it’s just helpful to continue to realize, because this is a sea change from when only 1 in 10 folks that were insured had debt. I mean, so very much we are seeing a shift, and I think that’s important to consider as we talk about insurance issues throughout this podcast and throughout our coverage.
Rovner: It was in the early 2000s, I think, when standard deductibles started being in the four figures instead of the three figures. I mean, originally they were like $1,000, $1,500. Now people have $4,000 and $5,000 deductibles, but we know that people don’t have $4,000 and $5,000 in savings. So, of course, they’re in debt if they’re going to go get medical care. They do not have or any way to get the amount of money that they are expected to cough up before their insurance takes over, and how no one saw this coming, I can’t imagine because it’s been blaring in huge lights the whole time. Sorry, Rachel, go ahead.
Cohrs: My extra credit is a piece in The Washington Post. The headline is “Republican Governors in 15 States Reject Summer Food Money For Kids,” by Annie Gowen. And this published a week ago, I think, but it definitely flew under the radar for me. And I think it’s a great example of outside-of-D.C. journalism reporting on the consequences of state uptake on some of these optional policies that Congress passes. And I think the part that stood out most was a couple quotes, one from Iowa Gov. Kim Reynolds that said she opposed food assistance for low-income youth because childhood obesity has become an epidemic, and another where the governor of Nebraska was saying that he just doesn’t believe in welfare, so they’re not taking this money. Obviously, there is precedent for Republican governors not taking money that could help offer more services, make residents healthier, but this was just a pretty striking example, I think, because it does deal with kids and food insecurity. So I thought it was great accountability work for outside the Beltway.
Rovner: Basically, this is the summer school lunch program for kids because they’re not in school and they don’t necessarily get their lunch at school in the summer, so this is how they can get lunch, but apparently some governors say they don’t want to do that. Well, my extra credit this week is from Rachel’s colleague, Tara Bannow at Stat, and it’s called “Pumping Milk at JPM Was a Nightmare. It’s Part of a Bigger Problem in the Industry.” And in case there are listeners who don’t know, last week was the big J.P. Morgan Health[care] Conference in San Francisco, which each year draws the big money of health care to a hotel to chat each other up basically. Well, Tara Bannow, who does an awesome job covering the industry, is also back from parental leave and still breastfeeding, which means she needs a private place to pump on a regular basis.
The folks at JPM told her she would have access to a space, but turned out it was locked almost every time she needed it, and she ended up pumping in a bathroom stall, which is, and I won’t get into the details here, not ideal. Calls to other big health conferences suggested such problems would not happen there, but the suggestion of also that if there were more women in high places at these conferences, it wouldn’t be such an afterthought. It was a really, really good, thoughtful piece and good job.
OK, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks as always to our technical guru, Francis Ying, and our editor, Emmarie Huetteman. 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. Joanne, where are you these days?
Kenen: I’m mostly on threads, @joannekenen1.
Rovner: Lauren?
Weber: Still on X @LaurenWeberHP.
Rovner: Rachel?
Cohrs: Still on X, @rachelcohrs.
Rovner: We will be back in your feed next week. Until then, be healthy.
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KFF Health News' 'What the Health?': All About the (Government) Funding
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Julie Rovner
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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.
As this election year begins in earnest, making it harder for Congress to pass bills, lawmakers on Capitol Hill are still struggling to fund the government for the fiscal year that began last October. And many health priorities hang in the balance.
Meanwhile, the Supreme Court is again wading into the abortion debate, accepting a case out of Idaho that pits a federal law requiring emergency care, including for pregnant women, against the state’s strict abortion ban.
This week’s panelists are Julie Rovner of KFF Health News, Sarah Karlin-Smith of the Pink Sheet, Tami Luhby of CNN, and Alice Miranda Ollstein of Politico.
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Sarah Karlin-Smith
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Tami Luhby
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Alice Miranda Ollstein
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Among the takeaways from this week’s episode:
- In Washington, lawmakers have reportedly reached a deal that could pave the way for passing necessary government spending bills. But it is unlikely they will pass a full package before the current extensions end, leaving many federal health programs hanging. And ahead of next week’s Iowa caucuses, it bears asking what Republicans would do in health if the party reclaims the White House.
- The Supreme Court is again stepping into the fray over abortion rights, choosing to review the conflict between Idaho’s abortion ban and a federal law requiring emergency medical care. It is notable that justices did not have to take this case and, by swooping in now, are setting up another major abortion ruling before the 2024 election.
- The Biden administration announced it will scale back so-called conscience protections for health providers that the Trump administration sought to beef up. The back-and-forth over the policy — which was created during the George W. Bush administration — reinforces the importance of pressing presidential candidates about what they would do administratively on abortion policy, rather than asking what bills they might sign into law.
- News out of Florida this week: Newly introduced legislation there would, among other things, classify abortion as a felony and penalize those outside the state involved in the sale or distribution of abortion pills if they are “likely to be used in Florida” — a concerning example of a state effort to regulate access to abortion nationwide.
- And the FDA approved Florida’s request to import drugs from Canada, a change for which Republican Gov. Ron DeSantis is taking credit — though both President Joe Biden and former president Donald Trump could also claim some of that credit. But there are a lot of hurdles left before the state receives its first shipments, and due to the way the policy will be implemented, it may not save the state much money anyway.
“This Week in Health Misinformation” highlights Olympic gold medalist and medical crowdfunding beneficiary Mary Lou Retton, who said this week she could not afford health insurance before her headline-grabbing bout of pneumonia because her preexisting conditions made having insurance too expensive. But a decade into the existence of the Affordable Care Act, the fact is that patients can no longer be penalized on the insurance market for preexisting conditions — and, as the record 20 million Americans who enrolled in ACA coverage this year may attest, there are plenty of federal subsidies available to help afford insurance, too.
Also this week, Rovner interviews American Medical Association President Jesse Ehrenfeld, whose focus is helping the nation’s physicians navigate a rapidly changing health care system.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: CNN’s “Bottled Water Contains Thousands of Nanoplastics So Small They Can Invade the Body’s Cells, Study Says,” by Sandee LaMotte. Also, ScienceAlert’s “It Turns Out Paper Straws Might Pose a Serious Problem Too,” by Carly Cassella. Also, The Washington Post’s “How Plastic Hides in Supposedly Eco-Friendly Laundry Products,” by Michael J. Coren.
Tami Luhby: KFF Health News’ “Most People Dropped in Medicaid ‘Unwinding’ Never Tried to Renew Coverage, Utah Finds,” by Phil Galewitz.
Alice Miranda Ollstein: Stat’s “Texas Taxpayers Wanted to Help the Poor Get Health Care. Instead They’re Funding a Medical School at a Wealthy University,” by Rachel Cohrs.
Sarah Karlin-Smith: The New York Times’ “The F.D.A. Warned an Asthma Drug Could Induce Despair. Many Were Never Told,” by Christina Jewett and Benjamin Mueller.
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Transcript: All About the (Government) Funding
KFF Health News’ ‘What the Health?’Episode Title: 329Episode Number: All About the (Government) FundingPublished: Jan. 11, 2024
[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, Jan. 11, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this, so here we go. We are joined today via video conference by Alice Miranda Ollstein of Politico.
Alice Miranda Ollstein: Hello.
Rovner: Sarah Karlin-Smith of the Pink Sheet.
Sarah Karlin-Smith: Hi, everybody.
Rovner: And Tami Luhby of CNN.
Tami Luhby: Good morning.
Rovner: Later in this episode, we’ll have my interview with Jesse Ehrenfeld, this year’s president of the American Medical Association. It’s a bumpy time to be a doctor, and the AMA is more relevant than it’s been for quite a few years. But first, this week’s news. So we heard over the weekend that House and Senate negotiators reached a deal on top-line spending ceilings for defense and non-defense discretionary spending.
Actually, they were kind of the top lines, I believe, that they agreed to last summer, and then the House Republicans tried to change. That is all well and good, and it is definitely a prerequisite for passing full-year appropriations bills, but that’s not going to happen between now and Jan. 19, when the first of two temporary spending bills expires. So what do we expect to happen?
Ollstein: I was up on the Hill yesterday, and it’s a very “what they’re saying vs. what they’re doing” situation. They’re talking a lot about, “We got this top line. We’re moving forward. People are somewhat warming to the idea of another short-term CR [continuing resolution] to give them a little breathing room to get this done.” But then Republicans who were pissed about the entire process voted down an unrelated rule on an unrelated bill just to say, “We’re mad.” So that’s obviously not a good sign for getting big things done quickly in the next few weeks.
An issue I’m tracking is also conservatives who are disgruntled about the level of spending being higher than they wanted, saying, “Well, if we’re going to agree to this, we might as well get some policy wins out of it.” And they’re digging in harder on some of these anti-abortion provisions, other culture war things. I think the health care ones are being somewhat overshadowed right now by the immigration border stuff, but the health care things are still in the mix, for sure.
Rovner: Yeah. The CR that expires first also includes continuing authorizations for a bunch of health programs like community health centers and a delay of a bunch of scheduled Medicare payment cuts. Tami, you’re following WIC [Women, Infants, and Children nutrition program], I know, and food stamps. Do we have any idea what the fate is going to be of these things that will also expire when that first CR expires? Do we expect they’ll continue until Congress decides what to do?
Luhby: Well, actually things are looking a little better for WIC participants in terms of a shutdown, not necessarily in terms of full-year funding. But if the government had shut down in October, the USDA warned that it actually only had a few days left of money to provide for WIC. But if the government does shut down next week, then the USDA has told me that SNAP participants, food stamp participants, and WIC participants can expect to continue to get their benefits for food stamps January and February and for WIC January, February, March.
But separate from that, one of the issues that WIC participants have — and WIC, by the way, is the program that provides funding for pregnant women, new moms, infants, and young children to buy groceries. The WIC program is underfunded because there’s actually a big growth in enrollment. And so, even though the Senate provided some more money in their initial bill, they actually need more than a billion dollars more to continue the program at the current participation levels.
And a lot of folks are warning that if Congress doesn’t provide more money, there could actually be waiting lists for the first time in decades. So it’s a big issue that’s continuing because, as we know, the Republicans are not looking to add more money to nutrition assistance.
Rovner: Jumping ahead, it’s a little bit to the abortion debate. This is the argument that if you’re basically going to force women to have babies, you’re going to need to help support them if the women otherwise would’ve had an abortion because they couldn’t afford it. I think where we are with WIC, I think, is sort of the leading edge of this.
Luhby: And WIC is actually very important to that because it also provides breastfeeding assistance and guidance as well as other supports for new moms.
Rovner: So there were things, though, that didn’t even make it into the CR. One of them is the 3.4% cut in Medicare doctor pay. That took effect Jan. 1. Doctors I know would like to get that rolled back. There’s other things that are hoping to catch a ride on whatever the next vehicle is, right?
Karlin-Smith: I mean, one thing I had been watching is PBM [pharmacy benefit manager] reform. There seemed like there was some bipartisan and bicameral momentum to try and tack that on to the next big moving package. And one positive thing for that is that it does offer some amount of savings that then could be applied to other areas like spending, including potentially helping maybe with some of the Medicare cuts. So that’s something in the mix to look for.
Rovner: Yeah. Something that actually is proceeding on a separate track, right? We don’t expect that to be folded into the appropriations — unless we do. My impression was that was proceeding on its own, at least for the moment.
Karlin-Smith: I think it was proceeding on its own, but there’s been talk of could they fold it into any deal that struck to fund the government, because I think the likelihood that it really does fully clear both the House and Senate on their own is small.
Rovner: Yes, it is an election year. It is harder for Congress to get anything done. Speaking of which, on the campaign trail, the Iowa caucus is next week. Boy, that sort of snuck up on us. Former President [Donald] Trump still seems very likely to win, and he’s once again vowing to undo the Affordable Care Act, which, by the way, hit an all-time enrollment record of 20 million this week. And open enrollment isn’t even quite over. Tami, do we know what Trump would do instead? That seems to be the part. He doesn’t ever say.
Luhby: No. It’s pretty much the same plan that he probably has from 2016 and 2017, which we never really fully learned about. So, no, it’s just going to be replaced with a “better plan” because, in his view, Obamacare is failing, and as we know, [Florida Gov.] Ron DeSantis also jumped on the same bandwagon, saying that he would actually also come up with a better plan, but he needs a few months to think about it.
Rovner: Because it’s always been right about to happen, of course.
Luhby: Well, as you may have heard, health care is complicated.
Rovner: And we’ll see something in two weeks.
Luhby: Right. Along with his block grant proposal for Medicaid that he mentioned at last night’s CNN debate.
Rovner: Yes. I was sort of taken by the comments of how they would fix health care in that debate, because Nikki Haley says, “We can fix it with tort reform and transparency.”
Luhby: Transparency. Yes.
Rovner: Right. Which are nice things, and as we say, almost every week, Congress is working on those things, but they are not going to solve what ails the health care system. All right, let us turn to abortion. Remember last week when I said we were still waiting to hear from the Supreme Court on the emergency petition from Idaho regarding the conflict between its state abortion ban and the federal Emergency Medical Treatment & Active Labor Act, EMTALA?
Well, on Friday, the court not only took the case, it overturned the stay of Idaho’s ban. So, at least for now, doctors cannot even provide abortions in medical emergencies unless the woman is at immediate risk of death. Alice, I assume that gives us a hint of where the court might be going with this case, and I imagine also that similar case out of Texas.
Ollstein: Yeah. So again, with the Supreme Court, you kind of have to read the tea leaves and make educated guesses. They’re obviously very secretive. But people who are following this case closely that I’ve spoken to, they think that both the stay of the lower-court ruling and the fact that they took this case at all is the sign that they’re really gunning for ruling on the side of the state abortion restrictions. Because this is really about the state-federal clash. When state abortion bans run into federal protections for patients in emergency circumstances, and which will prevail in that circumstance. So they didn’t have to take this case. The thinking was there is eventually going to be a circuit split on this issue between the 9th Circuit and the 5th Circuit. But the 9th Circuit hasn’t had a chance to rule yet. And so they could have waited, let this play out, allowed the 9th Circuit to hear the case and issue a decision, that would’ve probably punted this case until after the election. So it’s really interesting that they instead wanted to swoop in, allow Idaho to leapfrog the 9th Circuit, and also insert themselves into this really politically volatile case, and now they’re poised to issue a ruling right before the 2024 election that could have major implications for the whole country.
Rovner: They’re going to hear the mifepristone case before this summer too, right?
Ollstein: Absolutely. And so even people who had sort of assumed on the mifepristone case like, “Oh, the Supreme Court’s going to kind of punt. They’re going to dismiss on standing.” Now, because of how aggressive they’re being in this other case, I have experts telling me, “Well, now I’m not so sure about the mifepristone case. Maybe they don’t care about optics as much as they used to.”
Rovner: Well, also, I think this is this Supreme Court’s theme, of “let states do whatever they want.” Even though federal law is supposed to trump state law, they seem to be reversing that in a rather aggressive fashion.
Ollstein: Yes. A big theme is definitely skepticism of federal rulemaking power. This falls under that same category as well.
Rovner: Well, speaking of federal rulemaking power, those who follow abortion policy in D.C. know that every time an administration changes parties, the so-called Mexico City policy that bans funding to international groups that support abortion rights gets either canceled or restored, depending on which party is in power. Well, now we have another policy that seems to be flip-flopping every time an administration changes. It was a rule first issued at the end of the George W. Bush administration. The so-called conscience rule made it easier for medical professionals and others in health care to decline to provide care that violates their religious or moral beliefs. So not just abortion but transgender care, in some cases, just treating people with AIDS. The Obama administration scaled back the Bush rule, and then the Trump administration broadened it. Then it got blocked by the courts, and now the Biden administration has formally rolled back the Trump changes that never really took effect. Alice, where are we with this?
Ollstein: Like you said, this is a back-and-forth, and I think this is why a lot of the questions being asked of candidates on the campaign trail right now, related to abortion, are the wrong questions. They keep getting asked about what kind of bills they would sign. That’s not the question. The question is what would they do administratively, which they could do so much. They could undo this. They could reverse all kinds of things. I follow the Title X stuff. I follow the Mexico City policy on restrictions on international spending on reproductive health. There’s just so much, obviously — FDA regulation of abortion pills — but these are the things we should be focused [on], not a bill that Congress has shown itself unable to pass even with one-party control of Congress.
Rovner: Nikki Haley keeps correctly saying there aren’t 60 votes for anything in the Senate related to abortion.
Ollstein: Right. But then, she also is saying that to mean a future Republican president couldn’t really do much, and that part is not true. They could do a lot.
Rovner: Exactly. Well, moving on, it’s January, and state legislatures are coming back into session. And we’re seeing some pretty eye-popping bills introduced in Florida, where abortion rights supporters just secured enough signatures to get a referendum protecting abortion rights on the 2024 ballot. Republican state Rep. David Borrero introduced a bill that would not only ban abortion, it would classify it as a third-degree felony with penalties of up to 10 years in prison. It also seeks to reach anyone outside the state who makes, sells, or mails abortion pills if they are, quote, “likely to be used in Florida.” The bill also defines personhood as beginning at the moment of fertilization, which would, among other things, make most birth control illegal and give fetuses constitutional rights. Alice, this bill is obviously not likely to pass, but legislators are playing the long game here by trying to make these things look sort of not out of the ordinary, right?
Ollstein: Yeah, the pill one, I think, is more the one to watch there. I’m curious if other states try to do that as well. Obviously, that runs into legal concerns about regulating interstate commerce, et cetera. But I think that we’ve seen these sort of nation attempts to restrict the movement of both people and medications across state lines, since that is a huge way that people are managing to terminate pregnancies despite bans right now. And so I think there’s only going to be more and more activity in that area to try to close off those remaining outlets for people. But yes, on the personhood front, that’s something that states have been attempting to do for a long time now, obviously more recently. And I think there’s sort of a strategy of, “Let’s just put it in everything we can. Let’s throw it in everything we can. Let’s throw it in bills. Let’s throw it in amicus briefs.” And the hope is to eventually force this issue in court and to get a court to rule on whether the 14th Amendment covers fetuses, basically. Will that happen and when remains to be seen, but there’s definitely an effort to sort of seed it in the landscape.
Rovner: Sarah, this obviously — not so much the personhood part, although maybe that too — but trying to ban the movement of medication is something that clearly impacts the FDA. They seem to have been pretty quiet about this, but there’s an awful lot that seems to be sort of threatening the basic core procedures of what the FDA does. Are you hearing anybody whispering about this? Is there concern?
Karlin-Smith: I think the mifepristone case at the Supreme Court is a concern for people who watch FDA’s power and regulation, not just because of abortion but because it is seen as depending on how the court decides that case is something that really could touch on all of its regulatory authority as well. Certainly, this provision that Florida is trying to put in is really something where they seem like they’re effectively trying to regulate the abortion pill throughout the entire country and regulate manufacturers. So that would be concerning, again, if that somehow came to pass and was not struck down by courts, as Alice mentioned, for interstate commerce regulation, which is not some power that is usually given to the states, but so, in general, the abortion pill controversy makes anybody who’s impacted by the FDA regulation nervous.
Rovner: Well, meanwhile, the Federal Trade Commission has entered the chat. This week, it barred a tech company from selling data on people’s visits to medical centers and other health facilities. This was not affecting abortion. They were actually just trying to help people figure out where people are and help them sort of get through their medical undertakings. But this seems like kind of a big deal enforcing privacy post-Dobbs. It’s the first one of these I’ve seen. Have you seen any of these, Alice?
Ollstein: I’m in the same camp as you. Yeah. This is sort of the first I’ve seen of this. But as has been the trend over the last couple of years, it’s a very “throw things against the wall and see what sticks” kind of environment, and so you can’t dismiss the outliers because the outliers can very quickly become the norm.
Rovner: This obviously was not a company that was trying to get women’s menstrual data and figure out whether they’re pregnant and whether they’re going to have an abortion. But there is a lot of concern that because there’s so much medical data floating out now in the metaverse, shall we say, that it would not be that hard to do that. And I guess the FTC is trying to plant a flag and say, “Mm-mm, don’t even try.” Although I’m sure people will …
Ollstein: Again, circling back to our previous theme, like, who a presidential administration installs at places like the FTC that you might not think that has anything to do with health care and abortion, but it certainly does. It certainly can. Same with DOJ, Labor Department. A lot of these things touch on reproductive health in ways that aren’t always obvious.
Rovner: That’s right. Well, turning to prescription drug news, the FDA has approved Florida’s request to import cheaper drugs from Canada. But, Tami, you wrote about this. This comes with a long list of caveats, right? It’s not like they just opened the borders and said, “OK, buy what you want.”
Luhby: No, and Florida has also put forth a fairly restricted proposal. It’s only going to be for people in their public payer program, people like inmates and people who are cared for by the county health systems and, later, Medicaid. And it’s also a pretty small list of drugs, drugs for HIV/AIDS and mental illness, and certain ones. But no, there’s a lot of hurdles before the state can actually start importing drugs. There’s going to likely be a lawsuit by PhRMA. They came out pretty strongly against it. They don’t want this, and Canada doesn’t necessarily want this. They said this in 2020 when the Trump administration first indicated that they were going to move in this direction, and then Health Canada on Friday put out a pretty strong statement saying they are clear in its position. “Bulk importation will not provide an effective solution to the problem of high drug prices in the U.S.” So there’s a long path before Florida will be able to actually see this and an even longer path before its general residents will see it. People may think, “Oh, I can go up to CVS now and order my Canadian version of the drug, which will be much cheaper.” And that’s not at all the case.
Rovner: Sarah, this has been going on for more than 20 years — I think I covered it first time in 1998 — because it’s really popular among Republicans and Democrats because it sounds so good. “We’ll just buy cheaper drugs from other countries where they have the same drugs, and they sell them for less money because they have price controls.” But Canada can’t even supply Florida, much less the rest of the country, right?
Karlin-Smith: Right. I think people, sometimes you look at Canada on a map geographically. It’s a very large area, but the population compared to the U.S. is much smaller. So the supply chain that’s feeding Canada is very different. And then you get into why HHS and FDA has usually pushed back against this idea is because they’re concerned about securing the supply-chain safety and making sure people are actually getting what they … think they’re getting and know how to use the drug. And what’s basically happened under starting the Trump administration and then Biden’s kind of continued it is they came up with a pathway to sort of make importation potentially possible. But they put in so many hoops that these states will have to go through and so many processes in place to ensure the safety of it that by the time Florida does all of this, and again, as Tami mentioned, FDA hasn’t cleared any specific drugs for Florida to import yet; each drug product still is going to have to go through a bunch of steps to get that OK. So by the time they do all of that, it doesn’t look like it’s going to save very much money. Florida’s estimating maybe not quite $200 million for the first year and about the same the second year. If you look at just their Medicaid spending in a year on outpatient drugs, it’s like $1.-something billion. So you can see how tiny a savings that is.
Rovner: Yes. This is one of those things that’s not been partisan. It’s always been sort of the FDA wanting to protect the integrity of the supply chain, whether it’s controlled by Democrats or Republicans versus Democrats and Republicans who would like to find a way to help their constituents get cheaper drugs.
Luhby: One thing also to note that’s going to be interesting, because there’ve been so many people involved in this, we saw Ron DeSantis say yesterday at the debate that he took credit for pushing the federal government and beating the federal government, I think he said, to be allowed to import drugs. But this is also going to be a talking point that Trump and Biden will also be able to say on the campaign. So basically, everyone is probably going to try to take credit for this.
Rovner: Right. Everybody’s going to take credit for something that’s probably only going to happen in a very small way, if it happens at all.
Luhby: If it all happens at all.
Rovner: That’s right. Well, also this week, drug maker Eli Lilly said it is setting up its own telehealth service to help patients access not only its soon-to-be blockbuster weight loss drug Zepbound but also other diabetes and migraine drugs, basically cutting out the doctor or at least cutting out the patient’s regular doctor, if they have one. Sarah, this feels to me like a really big sea change. Is the FDA going to let this happen? Is the AMA going to let this happen?
Karlin-Smith: It’s really interesting. I think the first headline of it makes it seem a little bit more extreme or maybe novel than once you actually look into the details because Lilly’s …
Rovner: Kind of like drug importation.
Karlin-Smith: Right. Although I think more patients maybe will actually be served by this program. But, basically, Eli Lilly is setting up a website that will then connect patients to outside telehealth companies that have the ability to prescribe the drug. Again, these telehealth companies are supposedly prescribing all different drugs, not just Eli Lilly products. The doctor’s supposed to make sure you actually qualify for the product, and so forth. And then Lilly also seems to have developed partnerships with a couple online pharmacy companies that could then directly mail you the product. So Eli Lilly is sort of helping facilitate these connections for patients. But I think probably to avoid various scrutinies by the federal government, they’ve tried to disconnect themselves a few steps, but certainly make the process of getting a drug and their drug easier for patients. Also helping ease the process of getting any copay support or coupons the company offers. So they seem to be kind of taking advantage of a trend that we’ve seen in other areas, with ADHD, like male sexual health products, and so forth, of people wanting to do this through telehealth. And so they’re trying to, I think, get at least a cut of it or at least help steer their product there. But there’s definitely going to be questions, I think, around how you handle advertising and other things for the government to look at.
Rovner: Yeah, it’s definitely a space that, now, we’re going to have to start watching as well as everything else. All right. Well, now it is time for “This Week in Health Misinformation,” which is going to Olympic gold medalist gymnast Mary Lou Retton. Retton, who is now in her mid-50s, contracted a rare form of pneumonia, ended up in the hospital for a month, and became the subject of a crowdfunding effort launched by her daughter because she didn’t have health insurance. Retton, who has been very closed-mouthed about her illness and what happened to the half a million dollars the crowdfunding campaign raised, as is her right, did do an interview this week with the “Today” show on NBC in which she said she couldn’t afford health insurance because her preexisting conditions made it too expensive. For the record, if you’re uninsured, you can still sign up for an Affordable Care Act Plan in most states, and you can’t be charged more due to preexisting conditions. And there are still extra subsidies that we talked about earlier that were implemented during covid that makes insurance even more affordable. Why is it that people don’t know this yet?
Ollstein: Well, as we saw with record-breaking enrollment, a lot of people do know it, but the people who don’t are still loud.
Rovner: We’re 10 years into the ACA!
Ollstein: Yes. It’s funny. I mean, living in D.C. and doing this work, I always try to think about what of all of our reporting actually breaks through around the country. And it’s always interesting to see what does and what doesn’t.
Rovner: I used to stomp around the NPR newsroom when the ACA was just getting up and running, saying, “It is not my job to do the administration’s publicity. It’s really not my job.” But …
Luhby: Yeah.
Rovner: … they are still working on it.
Luhby: It also may be selective ignorance, because I’m sure if she actually asked anyone about health insurance or called any agent or insurer and said, “Well, I have this preexisting condition,” they may have said, “Well, on the ACA, it doesn’t matter anymore.”
Rovner: Yes. And that if she said she didn’t have the money after her divorce, it’s like those are the people who are eligible for big subsidies. All right. Well, that is this week’s news. Now, we will play my interview with AMA President Jesse Ehrenfeld, and then we will come back and do our extra credits.
I am pleased to welcome to the podcast, in person here in our D.C. studio, Dr. Jesse Ehrenfeld, president of the American Medical Association. Dr. Ehrenfeld is an anesthesiologist, medical school professor, researcher on medical information technology, and director of a statewide health philanthropy in Wisconsin, among other activities. He’s an Afghanistan combat veteran twice over, as well as the first openly gay president of the AMA and a national advocate for LGBTQ+ rights. Dr. Ehrenfeld, thank you so much for coming in. You are a very busy person.
Jesse Ehrenfeld: Well, thanks for having me. It’s great to talk to you today.
Rovner: So I want to start on Capitol Hill, since we’re here in D.C.
Ehrenfeld: Sure.
Rovner: And Congress is coming back and working on a budget, or so we hear.
Ehrenfeld: We hope they’re working.
Rovner: I know physicians are facing, again, a cut in Medicare pay, but that’s not the only AMA priority here in Washington at the moment, right?
Ehrenfeld: Well, it’s a big one for us. And, you know, it’s really painful that you turn the clock back, Jan. 1, and 3.37% Medicare cut to physician payments. It’s unconscionable. And so we’re optimistic that we can get a fix, hopefully retroactive, as the omnibus consolidation work goes forward, short of this Jan. 19 deadline coming up. But we can’t have it. Physicians continue to struggle. My parents lost their own primary care physician because of a challenge with their primary care doctor not being able to take Medicare anymore. And what we’re seeing is more and more doctors just stopping seeing new Medicare patients, or opting out of the program entirely. So, every other provider under Medicare is actually fighting for how many increase they’re getting while doctors are getting cut. So we’re hopeful that we can solve this, but it really is something that’s just urgent for us as an association.
Rovner: I thought we took care of this in 2015. I feel like it’s Groundhog Day. I covered it every year from about 2003 to about 2015, and then we solved it briefly.
Ehrenfeld: We solved one problem and replaced it with another, unfortunately. And the doomed SGR did die in 2015 — the unsustainable “sustainable growth rate” problem — that did lead to those year-end patches. And, unfortunately now, though, because of budget neutrality rules and other — we’ll call them “features” — of the program, we’re in the situation again. We do have optimism, though, that we might get some standing inflationary updates. There was the introduction of a bill last session. And we hope that that can be something that does move forward once we get through this time-sensitive issue to deal with the 3.37% cut.
Rovner: So I feel like the physician shortage is kind of like climate change. People have been warning about it for decades, and suddenly it’s here.
Ehrenfeld: It’s here.
Rovner: With people having to wait weeks or sometimes months to see a doctor. Obviously, like with climate change, it’s going to take a while to get out of the hole that we have dug. I know we’ve seen the establishment of several new medical schools, both allopathic and osteopathic, in the past decade. How soon might we be able to see some relief, and what more will it take beyond training more doctors?
Ehrenfeld: Well, we’re opening more medical schools, but we’re not actually training more doctors. And that’s the problem. We haven’t expanded GME [Graduate Medical Education] residency programs. And unfortunately, because, as you know, GME funding through the federal government is tied to a fixed cap, set in the 1990s by Medicare, we’ve opened all these new schools and the students don’t have a place to go to train. So that’s a problem that we need to solve. We’ve had a little tiny, tiny increase these past few years, a couple of hundred spots here and there. We need thousands more training spots open. We need the GME dollars to come from Medicare. We also need to solve some of the issues around how we get international medical graduates here and ready to practice in the U.S. Twenty-five percent of practicing physicians in the U.S. were trained abroad. Most people don’t know that. We already have a huge international workforce, but we do silly things, like we’ll let an international doctor train their residency here, and then we make them go away for two years to their home country before they can come back. There are H-1B visa waiver bills that are circulating around the Conrad 30 extension. We need to do those things as well. Unfortunately, as you’re aware, immigration reform is a challenging issue here in Washington. But there are commonsense solutions that have bipartisan support. And we’re hopeful that we can get some workforce pressure reductions, not just by expanding GME for U.S.-trained individuals, but also those international graduates.
Rovner: Yeah, I feel like people forget that immigration is about more than just people coming across the southern border. There are a lot of skilled-worker issues in the immigration debate.
Ehrenfeld: In lots of industries, health care, technology, other places as well.
Rovner: I know the rise — or should I say the “re-rise” — of prior authorization requirements from insurance companies is something that contributes to physician burnout and the physician shortage by driving doctors out of practice, just from frustration. The Biden administration has a new regulation to limit prior authorization in the pipeline. Assuming that that regulation is finalized soon, how close will that come to fully addressing the problem for your members?
Ehrenfeld: You know, we hope it’ll move the needle a little bit, but we need wholesale reform, and we need to do more than Medicare Advantage plans. Unfortunately, I hear every week from colleagues who are just at their wits’ end, and it’s frustrating. I see it with my own parents. I’m an anesthesiologist. I have a habit now, I ask my patients: “So how long did it take your surgery to get scheduled?” Eh, it’s a couple weeks or a month. I said, “And how long did it take for your insurance company to approve the procedure?” And it’s months. And often what they tell me is they approved it, and then they denied it after they approved it. And they have to go through all of this rigmarole that just doesn’t make sense.
Rovner: You think that Congress is going to need to step in at some point, or is this something that can be worked out?
Ehrenfeld: I think we’re going to have to have regulatory relief from Congress, and we’re pushing for that through our grassroots network. Certainly, we try to bring all the third-party payers together. We have a set of principles that, theoretically, third-party payers have agreed to, and yet they ignore them, and they continue to just harass patients, really to improve their bottom line, but not doing what’s in their best interests.
Rovner: So I want to talk a little bit about physician autonomy. Since the overturn of Roe v. Wade, we’ve seen an increasing level of what I call legislators practicing medicine. Now we have the Supreme Court …
Ehrenfeld: It’s OK if they have an MD.
Rovner: [laughs] That’s true. Now we have the Supreme Court — none of whom have an MD as far as I know — about to decide whether doctors facing women with pregnancy emergencies should obey state abortion bans, the federal EMTALA law, or their medical ethics, all of which may conflict. What’s the AMA doing to help doctors navigate these very choppy and changing legal waters?
Ehrenfeld: “Choppy” is a good word for it. It’s confusing. And since the decision, the Dobbs decision, came out, we have been working with all of our state and federation partners to try to help physicians navigate this. And I can tell you, it’s unbelievable that now physicians are having to call their attorneys, the hospital legal counsel to figure out what they can and can’t do. And obviously, this is not a picture that is a picture that supports women’s health. So we are optimistic that we might get a positive ruling with this EMTALA decision on the Supreme Court. But, obviously, there’s a long way that we need to go to make sure that we can maintain access for reproductive care.
Rovner: You’re younger than I am, but when I was growing up and covering this, the AMA didn’t want to talk about abortion because it was controversial. And now, certainly in the last five or 10 years, the AMA has come out. Do you think that’s something that has dawned on the rest of the members of the AMA that this is not necessarily about abortion, this is about the ability to practice medicine?
Ehrenfeld: Well, you know, look, if you look at some of these socially charged restrictive laws, whether it’s in transgender health or abortion access, or other items, we take the same foundational approach, which is that physicians and patients ought to be making their health care decisions without legislative interference.
Rovner: So it’s not just abortion and reproductive health where lawmakers are trying to dictate medical practice but also care for transgender kids and adults and even treatment for covid and other infectious diseases. How big a priority is this for the AMA, and what are you doing to fight the sort of “pushing against” scientific discourse?
Ehrenfeld: Well, we will always stand up for science. And it’s so important that as an association we do that. Our foundation in 1847 was to get rid of quackery and snake oil salesmen in medicine. And yet here we are trying to do some of those same things with misinformation, disinformation. And obviously, even if you look at the attack on PrEP, preexposure prophylaxis for HIV prevention — you know, an important part of the Affordable Care Act, right? Making it basically zero out-of-pocket cost for many Americans — those things are just unconscionable. We have treatments. We know that they work. We ought to make sure that patients and their physicians can have access to them.
Rovner: What about doctors who are pushing things that you know to be not helpful?
Ehrenfeld: We call them out, and we would encourage others to call them out. If somebody is trying to sell something that’s inappropriate or do something that doesn’t follow the evidence, we need to call it for what it is, which is inappropriate.
Rovner: It’s not just legislators who want to practice medicine these days. We also have the rise of artificial intelligence, which I know promises both huge advances …
Ehrenfeld: I’m real, by the way.
Rovner: [both laugh] Yes, I can attest that you’re real. At least you seem real. But, obviously, our artificial intelligence can portend huge advances and also other issues, not all of which are good. How is the AMA trying to push the AMA more towards the former, the good things, and less towards the latter, the unintended consequences?
Ehrenfeld: Well, we’re really excited about it. I’m excited about it. I have an informatics background. So, you know, I believe that there is so much power that these technologies and tools can bring, but we need to make sure that the technology is an asset, not a burden. And we have all lived through the painful rollout of electronic health records where that just was not the case. So we did survey — we do routine surveys, data that’s a nationally representative sample — in August of this year, it’s on our website. An equal number of physicians are excited about AI as they are terrified about AI, anxious, concerned, right? And we need to make sure that we have the right regulatory framework. We’re very appreciative of the ONC [Office of the National Coordinator for Health Information Technology] rule that came out, out of HHS [the Department of Health and Human Services], at the end of last year. Certainly, the Biden administration’s, whole of government’s approach we think is important, but that is no substitution for regulation. And we need to make sure that we have appropriate regulation. The FDA doesn’t have the framework that they need. The system set up in the ’60s and ’70s for drugs and biologics and devices hasn’t held up. So we know that there have to be changes. We just need to make sure that those changes only let safe and effective algorithms, AI tools, AI-powered products come to the marketplace.
Rovner: Dr. Ehrenfeld, that’s all the time we have. Thank you so much for joining us.
Ehrenfeld: Oh, thanks for having me. It’s been a treat.
Rovner: OK, we are back. 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. Tami, why don’t you go first this week?
Luhby: OK. Well, my extra credit is titled “Most People Dropped in Medicaid ‘Unwinding’ Never Tried to Renew Coverage, Utah Finds,” by KFF Health News’ Phil Galewitz. And as many of our podcast listeners know, states are reviewing the eligibility of their residents in Medicaid and terminating the coverage of those they deem ineligible. Roughly 14.4 million people have been disenrolled. And the big question is, what has happened to them? Did they return to Medicaid? Did they find coverage elsewhere, or did they become uninsured? And that’s the question that many actually Medicaid directors have been unable to answer.
So Phil’s story looks at a first-of-its-kind study conducted in October by Utah’s Medicaid agency. And in Utah, 94% of those disenrolled were dropped for procedural reasons, such as not returning their paperwork, rather than being deemed ineligible. And the study found that 57% of respondents did not attempt to renew their Medicaid coverage. Thirty-nine percent shifted to employer plans, and 15% signed up for Affordable Care Act coverage. So they remained insured, but 30% became uninsured. The story also shows that many Medicaid enrollees said that they had trouble reapplying for Medicaid coverage. They didn’t get the documents. They didn’t have the necessary paperwork. They couldn’t get their questions answered. And these are all things that we’ve heard about anecdotally, but the Utah study and Phil’s story actually put some numbers to it. And interestingly, Utah officials also confirmed that the U.S. Department of Health and Human Services is conducting two audits of the state’s Medicaid unwinding. So we’ll see what happens and what we find out from Utah may inform us about what’s happening in the rest of the country.
Rovner: Yes, we have noted before that HHS has been very close-mouthed about how it is trying to get states to maintain coverage for these people who are, if not eligible for Medicaid anymore, eligible for something else. Alice, you have kind of a related story, so why don’t you go next?
Ollstein: Yeah, I have something from our own Rachel Cohrs at Stat. It’s called “Texas Taxpayers Wanted to Help the Poor Get Health Care. Instead They’re Funding a Medical School at a Wealthy University.” It’s a great accountability story about how taxpayers were convinced to put up tens of millions of dollars that they thought was going to provide care for very poor people in the area around Austin, Texas. And instead, basically, none of that money is going to … directly to provide that care to people. And instead, it’s gone to build fancy buildings at this medical school, and overhead, and recruiting faculty. And the school and hospital insist that all of this trickles down eventually to patients. But it’s not what taxpayers feel they were promised. And so they’re getting upset about that.
Rovner: It is a very nice medical school. Sarah.
Karlin-Smith: I looked at a New York Times story from Christina Jewett and Benjamin Mueller, “The F.D.A. Warned an Asthma Drug Could Induce Despair. Many Were Never Told,” and it’s about Singulair, a now generic asthma medicine. Over 20 years after it was first approved, FDA added what’s known as its strictest warning, a black box warning, warning of very serious mental health side effects, including suicidal thoughts. And The New York Times investigation seems to have found out that really these messages are not reaching doctors. They’re not reaching patients, or parents, and many young kids who are taking this medicine. And that has led to many ill effects, including some very young people who have died by suicide. And it’s a really good dive into the challenges that FDA faces and kind of translating their regulatory action into something that then gets communicated to a doctor, and then a doctor translates to a patient. In many ways, it’s not that surprising a story to me because I think it’s kind of well known that not a lot of people read drug labels and then certainly not on an individual level, but even on a doctor level. And I think a lot of the risk-benefit conversations that FDA envisions happen between doctors and patients before people take drugs don’t actually happen in the real world. I once actually had a doctor who told me, “This medicine has a box warning, but don’t worry about it.” Which I always find as a pretty funny story as a drug reporter. And it just also raises a lot of issues, this story, about how drugs are studied on children and what’s done to make sure that as a drug goes generic, the safety is still being monitored, and somebody is responsible again for ensuring people are aware of new safety updates. So it’s a really good dive. I think the thing I was most struck by, though, is I think the solutions perhaps here are not ones that would be very popular in the U.S., which is that by design, the FDA does not regulate the practice of medicine. And, in most cases, I don’t think Americans would want FDA pushing the boundaries much further to get at the safety hurdles this story maybe flags.
Rovner: Yeah. More along our theme of the federal government and its role in society. Well, my extra credit this week is actually a collection of stories. It’s sparked by the headline on this month’s issue of Consumer Reports, which is “How to Eat Less Plastic.” The first story is from CNN reporting on a study in the proceedings of the National Academy of Sciences called “Bottled Water Contains Thousands of Nanoplastics So Small They Can Invade the Body’s Cells, Study Says.” And it basically says that plastic sheds just like skin cells do. So anything you eat or drink that’s stored or wrapped in plastic is going to get into whatever it is you’re putting into your body. If that’s not enough to give you pause, my second story is from ScienceAlert, which is a website, called “It Turns Out Paper Straws Might Pose a Serious Problem Too.” And it’s about a study that found that many paper straws contain those forever chemicals we keep hearing about, called PFAS, which, of course, are also in many plastics. Finally, if that’s not enough plastic for you, here’s a story from The Washington Post called “How Plastic Hides in Supposedly Eco-Friendly Laundry Products.” Basically, those laundry sheets that can replace the use of all those plastic bottles that we keep seeing ads for? Apparently, even many of those sheets that claim to be, quote, “plastic-free” contains something called polyvinyl alcohol, which is, you guessed it, a plastic that’s been found in drinking water and breast milk. I think the message here is everything you do is probably bad for you in some way, so be humble and do the best you can.
OK, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to our technical guru, Francis Ying, and our editor, my fellow happy Michigan Wolverine this week, Emmarie Huetteman. 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. Sarah, where are you these days?
Karlin-Smith: I’m trying to be places, but then it’s hard to be at all of them. So mostly Twitter and Bluesky, @SarahKarlin or @sarahkarlin-smith.
Rovner: Tami?
Luhby: The best place to find me is cnn.com.
Rovner: There you go. Alice.
Ollstein: Still on X @AliceOllstein, and @alicemiranda on Bluesky.
Rovner: We will be back in your feed next week. Until then, be healthy.
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The AMA Wants a Medicare Cut Reversed – And Lawmakers To Stay Out of Care
Congress is back this week and feverishly working on a bipartisan agreement to fund the government for the rest of the 2024 fiscal year.
Congress is back this week and feverishly working on a bipartisan agreement to fund the government for the rest of the 2024 fiscal year. Ahead of a potential vote, I spoke with Jesse Ehrenfeld, the president of the American Medical Association, the nation’s largest lobby group for doctors, about his organization’s priorities in Washington.
Some background: Ehrenfeld is a Wisconsin anesthesiologist, researcher and medical school professor who also directs a health-care philanthropy in his state. He’s an Afghanistan combat veteran, the first openly gay president of the AMA and a national advocate for LGBTQ+ rights.
This transcript has been edited for clarity and brevity. You can hear the whole interview later today on “What the Health?”
Rovner: Congress is coming back and working on a budget, or so we hear. I know physicians are facing, again, a cut in Medicare pay, but that’s not the only AMA priority here in Washington at the moment, right? [Note: A 3.37 percent cut to Medicare physician payments took effect Jan. 1.]
Ehrenfeld: It’s unconscionable. And so we’re optimistic that we can get a fix, hopefully retroactive, as the omnibus consolidation work goes forward.
Physicians continue to struggle. My parents lost their own primary care physician because of a challenge with their primary care doctor not being able to take Medicare anymore. And what we’re seeing is more and more doctors just stopping seeing new Medicare patients, or opting out of the program entirely.
Rovner: Now we have the Supreme Court — none of whom have an M.D., as far as I know — about to decide whether doctors [treating] women with pregnancy emergencies should obey state abortion bans, the federal Emergency Medical Treatment and Active Labor Act, or their medical ethics, all of which may conflict. What’s the AMA doing to help doctors navigate these very choppy and changing legal waters?
Ehrenfeld: Choppy is a good word for it. It’s confusing. And since the Dobbs decision, we have been working with all of our state and federation partners to try to help physicians navigate this. It’s unbelievable that now physicians are having to call their attorneys, the hospital legal counsel, to figure out what they can and can’t do. And, obviously, this is not a picture that supports women’s health. So we are optimistic that we might get a positive ruling with this EMTALA decision on the Supreme Court. But, obviously, there’s a long way that we need to go to make sure that we can maintain access for reproductive care.
Rovner: Do you think that’s something that has dawned on the rest of the members of the AMA that this is not necessarily about abortion, this is about the ability to practice medicine?
Ehrenfeld: If you look at some of these socially charged restrictive laws, whether it’s in transgender health or abortion access, or other items, we take the same foundational approach, which is that physicians and patients ought to be making their health-care decisions without legislative interference.
Rovner: It’s not just abortion and reproductive health where lawmakers are trying to dictate medical practice, but also care for transgender kids and adults and even treatment for covid and other infectious diseases. What are you doing to fight the sort of “pushing against” scientific discourse?
Ehrenfeld: Our foundation in 1847 was to get rid of quackery and snake-oil salesmen in medicine. And yet here we are trying to do some of those same things with misinformation, disinformation. And obviously, even if you look at the attack on PrEP, preexposure prophylaxis for HIV prevention — making it basically zero out-of-pocket cost for many Americans — [not providing PrEP is] just unconscionable. We have treatments. We know that they work. We ought to make sure that patients and their physicians can have access to them.
Rovner: Artificial intelligence can portend huge advances and also other issues, not all of which are good. How is the AMA trying to push [medicine] more toward the former, the good things, and less toward the latter, the unintended consequences?
Ehrenfeld: We need to make sure that we have appropriate regulation. The [Food and Drug Administration] doesn’t have the framework that they need. We just need to make sure that those changes only let safe and effective algorithms, AI tools, AI-powered products come to the marketplace.
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Can Family Doctors Deliver Rural America From Its Maternal Health Crisis?
CAIRO, Ga. — Zita Magloire carefully adjusted a soft measuring tape across Kenadie Evans’ pregnant belly.
Determining a baby’s size during a 28-week obstetrical visit is routine. But Magloire, a family physician trained in obstetrics, knows that finding the mother’s uterus and, thus, checking the baby, can be tricky for inexperienced doctors.
CAIRO, Ga. — Zita Magloire carefully adjusted a soft measuring tape across Kenadie Evans’ pregnant belly.
Determining a baby’s size during a 28-week obstetrical visit is routine. But Magloire, a family physician trained in obstetrics, knows that finding the mother’s uterus and, thus, checking the baby, can be tricky for inexperienced doctors.
“Sometimes it’s, like, off to the side,” Magloire said, showing a visiting medical student how to press down firmly and complete the hands-on exam. She moved her finger slightly to calculate the fetus’s height: “There she is, right here.”
Evans smiled and later said Magloire made her “comfortable.”
The 21-year-old had recently relocated from Louisiana to southeastern Georgia, two states where both maternal and infant mortality are persistently high. She moved in with her mother and grandfather near Cairo, an agricultural community where the hospital has a busy labor and delivery unit. Magloire and other doctors at the local clinic where she works deliver hundreds of babies there each year.
Scenes like the one between Evans and Magloire regularly play out in this rural corner of Georgia despite grim realities mothers and babies face nationwide. Maternal deaths keep rising, with Black and Indigenous mothers most at risk; the number of babies who died before their 1st birthday climbed last year; and more than half of all rural counties in the United States have no hospital services for delivering babies, increasing travel time for parents-to-be and causing declines in prenatal care.
There are many reasons labor and delivery units close, including high operating costs, declining populations, low Medicaid reimbursement rates, and staffing shortages. Family medicine physicians still provide the majority of labor and delivery care in rural America, but few new doctors recruited to less populated areas offer obstetrics care, partly because they don’t want to be on call 24/7. Now, with rural America hemorrhaging health care providers, the federal government is investing dollars and attention to increase the ranks.
“Obviously the crisis is here,” said Hana Hinkle, executive director of the Rural Training Track Collaborative, which works with more than 70 rural residency training programs. Federal grants have boosted training programs in recent years, Hinkle said.
In July, the Department of Health and Human Services announced a nearly $11 million investment in new rural programs, including family medicine residencies that focus on obstetrical training.
Nationwide, a declining number of primary care doctors — internal and family medicine — has made it difficult for patients to book appointments and, in some cases, find a doctor at all. In rural America, training family medicine doctors in obstetrics can be more daunting because of low government reimbursement and increasing medical liability costs, said Hinkle, who is also assistant dean of Rural Health Professions at the University of Illinois College of Medicine in Rockford.
In the 1980s, about 43% of general family physicians who completed their residencies were trained in obstetrics. In 2021, the American Academy of Family Physicians’ annual practice profile survey found that 15% of respondents had practiced obstetrics.
Yet family doctors, who also provide the full spectrum of primary care services, are “the backbone of rural deliveries,” said Julie Wood, a doctor and senior vice president of research, science, and health of the public at the AAFP.
In a survey of 216 rural hospitals in 10 states, family practice doctors delivered babies in 67% of the hospitals, and at 27% of the hospitals they were the only ones who delivered babies. The data counted babies delivered from 2013 to 2017. And, the authors found, if those family physicians hadn’t been there, many patients would have driven an average of 86 miles round-trip for care.
Mark Deutchman, the report’s lead author, said he was “on call for 12 years” when he worked in a town of 2,000 residents in rural Washington. Clarifying that he was exaggerating, Deutchman explained that he was one of just two local doctors who performed cesarean sections. He said the best way to ensure family physicians can bolster obstetric units is to make sure they work as part of a team to prevent burnout, rather than as solo do-it-all doctors of old.
There needs to be a core group of physicians, nurses, and a supportive hospital administration to share the workload “so that somebody isn’t on call 365 days a year,” said Deutchman, who is also associate dean for rural health at the University of Colorado Anschutz Medical Campus School of Medicine. The school’s College of Nursing received a $2 million federal grant this fall to train midwives to work in rural areas of Colorado.
Nationwide, teams of providers are ensuring rural obstetric units stay busy. In Lakin, Kansas, Drew Miller works with five other family physicians and a physician assistant who has done an obstetrical fellowship. Together, they deliver about 340 babies a year, up from just over 100 annually when Miller first moved there in 2010. Word-of-mouth and two nearby obstetric unit closures have increased their deliveries. Miller said he has seen friends and partners “from surrounding communities stop delivering just from sheer burnout.”
In Galesburg, Illinois, Annevay Conlee has watched four nearby obstetric units close since 2012, forcing some pregnant people to drive up to an hour and a half for care. Conlee is a practicing family medicine doctor and medical director overseeing four rural areas with a team of OB-GYNs, family physicians, and a nurse-midwife. “There’s no longer the ability to be on 24/7 call for your women to deliver,” Conlee said. “There needs to be a little more harmony when recruiting in to really support a team of physicians and midwives.”
In Cairo, Magloire said practicing obstetrics is “just essential care.” In fact, pregnancy care represents just a slice of her patient visits in this Georgia town of about 10,000 people. On a recent morning, Magloire’s patients included two pregnant people as well as a teen concerned about hip pain and an ecstatic 47-year-old who celebrated losing weight.
Cairo Medical Care, an independent clinic situated across the street from the 60-bed Archbold Grady hospital, is in a community best known for its peanut crops and as the birthplace of baseball legend Jackie Robinson. The historical downtown has brick-accented streets and the oldest movie theater in Georgia, and a corner of the library is dedicated to local history.
The clinic’s six doctors, who are a mix of family medicine practitioners, like Magloire, and obstetrician-gynecologists, pull in patients from the surrounding counties and together deliver nearly 300 babies at the hospital each year.
Deanna Buckins, a 36-year-old mother of four boys, said she was relieved when she found “Dr. Z” because she “completely changed our lives.”
“She actually listens to me and accepts my decisions instead of pushing things upon me,” said Buckins, as she held her 3-week-old son, whom Magloire had delivered. Years earlier, Magloire helped diagnose one of Buckins’ older children with autism and built trust with the family.
“Say I go in with one kid; before we leave, we’ve talked about every single kid on how they’re doing and, you know, getting caught up with life,” Buckins said.
Magloire grew up in Tallahassee, Florida, and did her residency in rural Kansas. The smallness of Cairo, she said, allows her to see patients as they grow — chatting up the kids when the mothers or siblings come for appointments.
“She’s very friendly,” Evans said of Magloire. Evans, whose first child was delivered by an OB-GYN, said she was nervous about finding the right doctor. The kind of specialist her doctor was didn’t matter as much as being with “someone who cares,” she said.
As a primary care doctor, Magloire can care for Evans and her children for years to come.
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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KFF Health News' 'What the Health?': 2023 Is a Wrap
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Julie Rovner
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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.
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.
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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.
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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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KFF Health News' 'What the Health?': Abortion and SCOTUS, Together Again
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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.
The Supreme Court this week agreed to hear a case that could further restrict abortion — even in states where it remains legal. The case to determine the fate of the abortion pill mifepristone is the first major abortion case to come before the court since its overturn of Roe v. Wade in 2022. It could also set a precedent for judges to second-guess scientific rulings by the FDA.
Meanwhile, legislation is finally moving in the House and Senate to renew a long list of health programs that technically expired at the end of the last fiscal year, on Sept. 30. But the bills to fund community health centers and build on programs to fight the opioid epidemic are unlikely to become law until January, at the soonest.
This week’s panelists are Julie Rovner of KFF Health News, Riley Griffin of Bloomberg News, Alice Miranda Ollstein of Politico, and Lauren Weber of The Washington Post.
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Riley Griffin
Bloomberg
Alice Miranda Ollstein
Politico
Lauren Weber
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Among the takeaways from this week’s episode:
- The Supreme Court will consider a case challenging access to mifepristone, opting to review FDA decisions in recent years governing the loosening some requirements for distribution and use of the so-called abortion pill — such as the agency’s call allowing pregnant people to obtain the drug without a doctor’s visit. While the drug’s overall approval is not in question in this case, the drug industry argues undermining the FDA’s authority could open the floodgates for challenges to other pharmaceuticals and have a chilling effect on drug development.
- Legal experts say the Texas high court’s ruling blocking the abortion of a pregnant woman whose fetus has a fatal condition calls into question whether doctors are able to identify any medically necessary circumstance under existing legal exceptions. And, in other court news, the Supreme Court will let stand a Washington state law banning conversion therapy.
- On Capitol Hill, lawmakers are bundling an assortment of bipartisan, generally unrelated health measures so they can be approved, possibly as part of a government spending package in January. But can this Congress — which has proved unproductive even by recent standards — finish its work in a presidential election year?
- One piece of legislation under consideration would address the opioid epidemic, renewing grants for state efforts to prevent and treat opioid use disorder. The epidemic has taken a toll, but it is not the only problem contributing to a troubling drop in U.S. life expectancy.
- And cyberattacks are on the upswing in health care, with new revelations about an attack that targeted the Department of Health and Human Services at the onset of the pandemic.
Also this week, Rovner interviews University of Maryland professor and social media superstar Jen Golbeck about her new book, “The Purest Bond,” which lays out the science of the human-canine relationship.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: The Washington Post’s “They Watched Their Husbands Win the Heisman — Then Lost Them to CTE,” by Kent Babb.
Alice Miranda Ollstein: Politico’s “A Deadly Delivery Highlights ‘Falsified’ Heat Records at USPS,” by Ariel Wittenberg.
Lauren Weber: The Washington Post’s “Applesauce Lead Cases in Kids Surge Amid Questions on FDA Oversight,” by Amanda Morris, Teddy Amenabar, Laura Reiley, and Jenna Portnoy.
Riley Griffin: Bloomberg News’ “The Next Blockbuster Drug Might Be Made in Space,” by Robert Langreth.
Also mentioned in this week’s episode:
- The American Prospect’s “The Life-and-Death Cost of Conservative Power,” by Paul Starr.
- Bloomberg Businessweek’s “The Untold Story of a Massive Hack at HHS in Covid’s Early Days,” by Jordan Robertson and Riley Griffin.
click to open the transcript
Transcript: Abortion and SCOTUS, Together Again
KFF Health News’ ‘What the Health?’Episode Title: Abortion and SCOTUS, Together AgainEpisode Number: 326Published: Dec. 14, 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. 14, 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 Alice Miranda Ollstein of Politico.
Alice Miranda Ollstein: Good morning.
Rovner: Lauren Weber of The Washington Post.
Lauren Weber: Hello, hello.
Rovner: And we welcome to the podcast for the first time Riley Griffin of Bloomberg News.
Riley Griffin: Thanks for having me.
Rovner: Later in this episode, we’ll have my interview with University of Maryland professor Jen Golbeck, who is probably better known to anyone on social media as “GR Mom,” the woman who takes in half a dozen special-needs golden retrievers at a time. She’s co-author of a new book called “The Purest Bond” that explains why our love for dogs is not just all in our heads. But first, this week’s news.
We will start with abortion this week. In news, Alice, that you anticipated last week, the Supreme Court has decided to hear a case out of Texas regarding the abortion pill mifepristone. Depending on how the court rules, it could make abortion less available even in states where it remains legal. But Alice, this might not be as consequential as it looks at first blush because they didn’t take the case that could have impacted the overall approval of the drug, right?
Ollstein: That’s right. So they’re basically taking up what the 5th Circuit decided, not what the district court decided. The district court, as we remember very dramatically, decided that FDA approval of mifepristone decades ago was done incorrectly and would have moved to effectively ban the drug nationwide. What’s at issue before the Supreme Court are subsequent FDA decisions to make the pill more easily accessible, but those are really important and sweeping. I mean, I feel like the mail delivery piece is getting a lot of attention, but it’s not just that.
These are decisions that, one, approved a generic version of the pill, which made it cheaper and more accessible all over the country. It expanded its use from just the first seven weeks of pregnancy to the first 10 weeks of pregnancy. Those crucial weeks are when a lot of people realize they’re pregnant and make a decision about that. And more recently, allowing retail pharmacies to dispense the pills and, crucially, not requiring an in-person doctor visit to obtain them.
So the companies that make the pills say that if the Supreme Court were to side with the groups challenging these rules, it would be a de facto ban, at least temporarily, while they have to go through relabeling and retooling and everything. And that could take a while. So I think while abortion rights groups are celebrating that the overall approval of the pills is not in question, this is still very, very consequential, and it’s going to be decided just months before the presidential election, keeping this really front and center in people’s minds.
Rovner: Just to confirm though, the Supreme Court has already weighed in and put even what the 5th Circuit did on hold, right?
Ollstein: Yes.
Rovner: So nothing has changed at the moment from what’s originally available.
Ollstein: That’s right. And so in states that have their own bans, the bills are still banned. In states where they’re protected, they’re still protected, and that will continue until the high court hears and rules on the case.
Rovner: But even though, I mean, the court is not going to take up the case where the lower-court judge said that the FDA shouldn’t have approved this in the first place, this could still be the Supreme Court basically overruling FDA’s judgment about what’s safe and effective, which could have big implications for drugs way beyond mifepristone, right?
Ollstein: That’s what the companies that make the pills and other unrelated pharmaceutical companies have been arguing. They say that this could open the floodgates for anyone with a grievance against any drug to try to challenge it. People are worried about contraception. People are worried about covid shots. Anything that’s generated any level of pushback and controversy, that would greenlight this strategy for them.
And the pharmaceutical industry has also argued that it could put a chilling effect on companies even submitting new drugs for approval, saying, if they don’t have the confidence that a court could come in later and yank away the approval, why would they feel confident in putting this out on the market? So this has the potential to be really disruptive. And I would note it comes at a time when the Supreme Court is overall really questioning deference to federal agency decisions across the board, anything from the Commerce Department to … there was a case about phishing regulations. And so, overall, it’s this “war on the administrative state” effort and this is definitely a piece of it, and it could affect health care in a lot of ways.
Rovner: Riley, you watch the drug industry. First, they were staying out of it, and then they finally decided, oh, we should get a little bit exercise because this could be important. Where are they these days?
Griffin: I think what’s been so novel for me situated here in D.C. is to watch industry lobby conservatives on this agenda. To say, this is about business interests. And if you break this house of cards, what else is going to come crashing down? So Alice made that point, and it’s a really important one. The implications here are far-reaching. And in questioning the FDA’s authority in this space, you are really going so much further, and it calls into question other drugs.
Rovner: So great, we’ll have something to talk about for weeks and weeks to come. Well, still in Texas — why does it seem that all the abortion news comes out of Texas? Last week we talked about Kate Cox, a 31-year-old mom of two, whose fetus was diagnosed at 20 weeks with a birth defect incompatible with life.
When we left off taping last Thursday morning, her lawyers were asking a Texas state judge for permission for her to have an abortion because her doctor said continuing the pregnancy could threaten her health and/or her ability to have more children in the future. Alice, a whole bunch of things happened after that. Catch us up.
Ollstein: People are really seizing on this case because it really calls the question on a lot of the assumptions of our post-Roe legal and health care landscape. And so a lower court ruled in her favor and said she should be able to get an abortion to protect her health and her ability to have another child. They said that the state should be barred from bringing criminal charges against the doctor performing the procedure. So that was all set to go forward.
And then the Texas Attorney General Ken Paxton, who recently survived an impeachment attempt, I should note, moved to intervene and moved to ask the Texas Supreme Court to stop this abortion from happening. He argued that the woman should not qualify for a medical exemption, and the Texas Supreme Court put a hold on the lower-court ruling and said it needed a little more time to think about it. And then they came back and ruled against the woman and said she should not be allowed to get an abortion. But it was moot in terms of her specific situation because of the threats to her health. She had already been to the emergency room several times at this point, and so she decided to go out of state for the procedure.
When I wrote about this, I tried to look into what are the bigger implications here. And a legal expert said something that really struck me, which is that the entire Dobbs premise is that you could ban so-called elective abortions, but maintain access to medically necessary ones. Sometimes they’re called therapeutic abortions. There’s a lot of weird terminology. And this really calls that question, can you always distinguish between those two?
Who’s to say? Here, the doctor’s interpretation of which was which clashed with the state’s interpretation of which was which. A lot of states have these so-called “life of the mother” exemptions, and this really shows that they are very difficult to use in practice.
Rovner: I’ve covered this for so many years at the federal level with little wording changes to the Hyde Amendment, and the big fight has always been between exceptions for the life of the mother and for the health of the mother. And the anti-abortion movement has always said, you can’t have a health exception because that would include mental health and it would just include anyone who said she doesn’t want to be pregnant.
So the phrase is always “It’s a loophole you can drive a truck through.” But then you get to these cases where it clearly is women whose water breaks at 20 weeks, it will eventually be life-threatening, but is immediately health-threatening. But a lot of these states don’t have health exceptions because they say that they could be used too broadly, and that’s kind of where they get stuck, right?
Weber: Yeah. I just wanted to chime in and say that I think what’s interesting about this case is this is the first time I’ve heard a lot from folks that aren’t in the media at all, don’t read the media every day, don’t see the flood of stories that this podcast group and folks, probably many of the listeners to this podcast, have seen about abortion coverage. It’s the first time I got a wave of phone calls being like, “Hey, can you explain this to me? What does this mean?” So I think that this story out of Texas, this reality, this lawsuit, has broken through to the rest of the country.
I mean, granted, this is an anecdotal sample size of my family and friends that live in the heart of the country, but I do think this has broken through in a way that many of the other stories that we’ve all written here have not. And so I’m very curious to see how this continues to play out because I do think this is gaining a lot more awareness with these lawsuits. We have this one, and then I know there’s one in Kentucky that I think we’ll see play out in the next couple weeks and months, obviously.
Rovner: Yeah, and I think one of the things that’s really important about this is that we know her name and we know what she looks like because she’s been brave enough to come forward in the middle of this medical crisis and allow them to use her name and do TV interviews. And Alice, I interrupted you.
Ollstein: Oh, yes. A couple things. We haven’t mentioned that this was a non-viable pregnancy. Her fetus was diagnosed with a almost certainly fatal condition. So I think that’s another key piece of it. Other states have an exemption for fetal diagnoses like this where someone can get an abortion. Texas does not. And I talked to some Texas anti-abortion groups who were insistent that she should not be granted an exception and that the “compassionate” thing to do would be to force her to give birth and then watch the child die and mourn it. They were very explicit about that.
And so I think that is also capturing a lot of people’s attention, like Lauren was saying, where they’re fighting for a potential life that is very potential at this point. And you’re hearing a lot of rhetoric from conservatives right now that are insisting that allowing exemption for fatal fetal conditions is akin to eugenics. They say that these fetuses should be given every chance at life, even if that life is very brief and sometimes painful. So I think this is a debate we’ll continue to see play out.
Rovner: Yeah, I was surprised. I mean, Kellyanne Conway, of all people, who’s not just the former Trump aide, a prominent Republican pollster, actually had a tweet this week that suggested this is not great for Republicans. What’s happening to this woman? The fact that it’s so public. Riley, you wanted to say something?
Griffin: Yeah, just another point Alice mentioned, “this potential life,” but the attorneys have also mentioned the potential for future lives … that this woman, it’s not just her health being impacted, but it also could decrease her ability to have children in the future, which is another part of this story that I think is really tugging at people’s heartstrings. And just that the ruling came hours after she made the announcement that she’d left the state to get the procedure. I mean, all of these things combined make for such a poignant story.
And I want to bring in some research that has also recently been published, which suggests she’s not alone. Nearly 1 in 5 people seeking an abortion have traveled out of state, according to the Guttmacher Institute, citing data from the first half of 2023. And experts are saying this is probably an underestimate. And when you do get to those states in places where abortion remains legal, wait times are increasingly long.
So there are so many dynamics at play. It’s not just the states where access is limited and we’re seeing these very difficult rulings come down, but what are the consequences in the places where access remains available? But that flood of folks trying to get these procedures have to make that travel. Sorry, I jumbled my words there, but you understand what I’m saying, or I can try again.
Rovner: The other piece of that, if you play that all the way out, where women are having to travel and they often have other kids, so they have to get someone to watch their kids and they have to get time off of work, and they have trouble getting appointments in other states, and that means that these abortions are happening later in pregnancy, which is, I know, not what the anti-abortion movement wants. And also the later in pregnancy you get, the more risks there are and the more expensive the whole thing gets.
So it’s just the whole thing is piling on each other. But I think, Riley, something you said that I think I keep highlighting and want to keep highlighting, most of the women we’ve been talking about individually are women who got pregnant because they wanted to have a baby. These are not women who weren’t using birth control and like, oops, I got pregnant. Kate Cox wants to have more children. This was a very wanted pregnancy. … I think one of the things we’re discovering through all of this is that more pregnancies go wrong than people realize. It’s just that when pregnancies go wrong, people tend not to want to talk about it. It’s painful and awful, and it’s not like having your appendix out. So I think we’re kind of, as a population, discovering that pregnancy is fairly fraught. For every baby that’s born happy and healthy, there are a lot of pregnancies that just don’t work the way they’re supposed to.
Ollstein: And I also have seen a lot of chatter saying, “This is the new frontier. We’re going to see this wave of individual women suing for the right to have an abortion.” And I don’t think that’s true. Kate Cox’s lawyers don’t think that’s true. Most women in this circumstance can’t do this or are not willing to be the public face of a lawsuit and get all kinds of threats and harassment.
And a lot of people aren’t able physically to wait for a court to rule. Even Kate Cox wasn’t. And so the idea that there’s going to be so many people who are actively pregnant and seeking an abortion and have the resources to find an attorney willing to represent them and are willing to go through this, I think I’m hearing that that is not likely at all, that this is somewhat of an outlier.
Rovner: While we were talking about asking permission for courts, the Supreme Court this week declined to review a challenge to a Washington state law that banned so-called conversion therapy. I’m still having trouble wrapping my head around this because it’s like a quadruple negative, but what is conversion therapy and where are we now that the appeals court ruling is being allowed to stand?
Weber: I think a lot of people don’t realize this, but there was actually a report that just came out from The Trevor Project. Conversion therapy is a process in which people try to, they call it, convert LGBTQ folks to have heterosexual relationships, and there could be a wide array of what that means. It involves sometimes psychological therapy, sometimes physical therapy, all kinds of things. Many, many states have banned this because science has shown it is not an effective treatment and can lead to mental health effects.
But I think why this ruling is important is that, as I was saying, The Trevor Project has identified there’s over 1,300 practitioners of conversion therapies across the country. Even though this is banned in so many states, this is a practice that goes on and on and on, despite what seems to be a lot of negative health impacts of it. So the fact that the Supreme Court decided not to take this up at all is considered very much a win for the LGBTQ community, especially considering the fact that this does still go on in many, many states.
Rovner: At least … that’s one thing that’s off the table, at least for the very moment. Well, let us go back to Capitol Hill, where lawmakers are actually passing stuff, albeit so late in the session that these policies are unlikely to make it over the finish line until 2024.
The House Monday night passed a bill that includes a bunch of things we’ve been talking about all year: site-neutral payments in Medicare to prevent hospital outpatient departments from charging multiples more to Medicare than non-hospital affiliated facilities; banning some pricing practices by pharmacy benefit managers; clarifying and extending some price transparency rules for hospitals and insurers, particularly those not making their prices public even though it is now required by law; funding community health centers; and stopping some scheduled cuts to hospitals that serve a high proportion of low-income patients.
Yes, that’s a whole lot of things that don’t necessarily go together, but this is how Congress works. All of these things were supposed to happen before the start of the new fiscal year, Oct. 1. Now, let me check, it is the second week of December. These are pretty bipartisan policies, most of them. What the heck took them until December to get this through?
Ollstein: This has been, even by Congress’ standards, a historically unproductive Congress. We spent a lot of the year battling over who should be the House speaker, for instance. That took up a lot of time. They took a really long summer recess, and there’s been all kinds of back and forth over just keeping the government funded. So that has not left a lot of room for basic policymaking. And there’s the fear that heading into next year — a lot of this stuff is getting punted into next year — that only gets harder in an election year. They’re in session less time. There’s less of an incentive to compromise. People are really retreating into their corners. And so it’s not a great outlook, even for things that really are popular on both sides of the aisle.
I will say, on the site-neutral payments piece, that’s been a long-time goal for a lot of people. And what’s being debated now is seen by some as inadequate, way not enough. It’s only a narrow set of drugs within Medicare. People would like this to be implemented way more broadly.
But you also have the hospital industry really mobilizing against it and saying, “You know all those rural hospitals that are closing down and going out of business? That’s going to get worse if you do this.” And as we know, hospitals are often the biggest employer in a lot of congressional districts, and so that could make this hard to pass as well.
Rovner: The same thing with the PBM [pharmacy benefit manager] reforms, and you’ve got the drug industry and you’ve got the hospital industry. So even though these things are “bipartisan,” that doesn’t mean that there isn’t plenty of opposition out there, which I guess kind of answers my question of why this took so long. I imagine we expect this — now that it’s in a package — to go on the next government funding bill, which should be in January, right? That’s what we’re looking for?
Weber: Yes, it should go in the next government possible spending bill, but who knows? Are we headed towards another shutdown when that happens? I mean, we’ll have to see. And I just want to echo what Alice said. I mean, not doing a lot of lawmaking this year does have real consequences. I mean, when we talk about these site-neutral payments — I’ll never forget when I was at KHN [KFF Health News], I wrote a story about a seamstress who had rheumatoid arthritis, and she went to the same doctor’s office every time to get arthritis shots. Very normal treatment, right? Her doctor’s office moved up one floor and her bill went up 10 times. Her shots went from $30 to $300 because they were then considered an in-hospital facility. So when we talk about things like site-neutral payments, which are jargony words, they disguise what happens to everyday Americans and the actual cost — literal cost, physical and emotional and financial — of legislation like this not making it through.
Rovner: And I think the biggest irony is that when you look at public opinion polls, Democrats and Republicans are so divided on so many things, but one of the things that they are not divided on at all is that health care costs too much and the Congress should be doing things to make health care cost less. So these are things that, if they can get them over the finish line, would actually be popular.
Well, speaking of things Congress was supposed to do before the start of the fiscal year, Riley, you’re watching the progress of another bill we’ve been following, the SUPPORT [Substance Use Disorder Prevention that Promotes Opioid Recovery and Treatment for Patients and Communities] Act, that authorized programs to fight the opioid epidemic. Remember the opioid epidemic? What’s the status of that bill?
Griffin: Yeah, great question. So more than two months ago, provisions from a major 2018 opioid law, the SUPPORT Act, which provides grants for states to pay prevention, treatment, and recovery services for people with opioid use disorders, expired. But on Tuesday, the House and Senate HELP Committee advanced that legislation in an effort to expand treatment for opioid use disorder amid the ongoing epidemic. And, as you’d mentioned, this is known as the Support for Patients and Communities Reauthorization Act and the Modernizing Opioid Treatment Access Act.
And we saw the House overwhelmingly vote to reauthorize the law. And, meanwhile, the Senate HELP Committee also approved its version of the bill, setting up consideration by the full Senate and likely enactment of a new law quite soon. Sen. Bernie Sanders of Vermont said that passing this $4.3 billion piece of legislation to reauthorize and expand the SUPPORT Act would be a huge success and will do a lot to increase the number of substance abuse counselors and mental health professionals.
Rovner: But again, not likely before the end of the year, this bill that should have been done before Oct. 1.
Griffin: Precisely. But again, also a place where you see that bipartisan support. I mean, the opioid epidemic is something that is coming up on the debate stage. Fentanyl is a buzzword that is being used by Democrats and Republicans alike. And not just to talk about the state of affairs here in the United States, where more than 100,000 people die every year of overdose-related deaths, but also to talk about immigration reform and China, right? These topics have all become a swirling part of the discourse on the opioid epidemic, and it’s something to watch going into the 2024 election.
Rovner: Yes. Something else that is linked to the whole opioid epidemic is this concern about life expectancy. We’ve had some new statistics on life expectancy, which is creeping back up now that deaths from covid are falling off, but not as fast as in many other industrialized countries. Women’s life expectancy is still substantially longer than men’s. What is up with this and what is holding the U.S. back? Why is our life expectancy still so much worse than people across the pond?
Weber: I think there’s a lot of things at play in the U.S. and a lot of it has to do … right now, we’re seeing it creep up because of the covid numbers. But what covid exposed was an absolute failure of primary care across the United States, an absolute failure of public health, an absolute failure to confront the fact that the vast majority of the reason that our life expectancy is so much worse than other countries is because of our chronic disease problem that is not getting dealt with.
And frankly, post-covid, it’s not like we’ve seen some sort of ginormous wake-up call overhaul either. I mean, this is the reality that we’re continuing to live in. So while it is heartening to see that the life expectancy numbers are changing a little bit because the covid death rates have gone down, I think the U.S. still has to grapple with the fact that we live in a country that is not addressing these issues. And I mean, I’ve talked about this on this podcast, but to reiterate again, politics does play into this.
As you see, there are … red states’ life expectancies are typically lower than blue states’ life expectancies. And that’s due in part to the fact that in the 1980s, Reagan and Congress allowed the states to decide how they were going to spend their public health and safety-net dollars in different ways, and we’ve seen that play out in this grand experiment over the last couple decades. And, again, doesn’t seem to be much reckoning with that either. So I think these life expectancy trends, where the U.S. lags behind other countries, are going to continue.
Rovner: Yeah, I wanted to actually call out a piece that Paul Starr at Princeton wrote about these red state-blue state differences because a lot of them we had talked about. Red states had earlier death rates because of the opioid epidemic and fentanyl and these deaths of despair.
But, actually, what the research that Paul Starr looked at was more what you’re saying, Lauren, which is that the states that enrolled children in Medicaid earlier are having better outcomes now, 30, 40, 50 years later, than the states that didn’t. And, also, the states that had restrictive gun laws are having longer life expectancies than states that didn’t. Riley, you’re nodding your head.
Griffin: It’s an amazingly unique American paradox to see greater spending on health care and yet shorter lives compared to other countries. Wealthy nations which spend half per person on health care compared to the United States are seeing their citizens outlive Americans by an average of more than five years. I mean, that data when you put it together is just so jarring. And it, as Lauren has been saying, has been cementing itself before the covid pandemic, which obviously had such a devastating toll.
But as we start to see that trend shift, where in 2022 life expectancy at birth was 77.5 years compared to 76.4 the year prior, that change is largely due to a decrease in covid deaths. We’re still seeing deaths from flu, pneumonia, fetal and infant conditions continue to rise. So the infectious disease front doesn’t look good in other spaces. And as you mentioned, Lauren, these chronic diseases that really set the U.S. apart from its peers, GDP-size-wise, is just so jarring.
Rovner: Finally, this week, because there isn’t already enough for us to worry about with the health system, cyberattacks appear on the upswing. Every week we hear about hospital IT systems literally being held for ransom and hacks into databases with our very most sensitive personal information, like 23andMe. Riley, you have a story about a hack at HHS [the Department of Health and Human Services] that was more serious than we thought.
Griffin: Yeah, thank you for allowing me to speak about this story. So my colleague Jordan Robertson and I investigated a cyberattack that hit HHS at the very outset of the pandemic. And at the time, we found that it was downplayed by department leadership. So only years later, it’s three-plus years down the road, we’ve learned through on-record interviews and other discussions that it was actually quite an unusual and rather concerning case. Some of the officials described the attack as an attempt by a nation-state to break into the department managing the U.S. covid response just as HHS’ IT staff were temporarily loosening security to its more than 80,000 employees so that they could log in remotely. They used a common technique, which is called a DDoS, or a distributed denial-of-service attack, where hackers disrupt a computer network by flooding it with traffic.
Now, typically when people think of this kind of attack, it’s meant to overwhelm and then shut down the system. But what we learned through interviews with these officials is that it was more of an act of espionage. Rather than shutting down the system, it was intended to map HHS’ network. So a pretty concerning story to say the least. And another novel part of this is that the officials, the Chief Information Officer Jose Arrieta and Chief Information Security Officer Janet Vogel, said the attack began ramping up as early as October of 2019.
So a lot of strange pieces at play. Those two officials attribute the attack to China, though HHS has said it did not come to that conclusion. And the Office of Inspector General complicated the picture further by saying that they actually found it was connected to a person, an entity in Ukraine. So not all the questions are yet answered, but I think the takeaway from this story is that when a cyberattack hits, not everything is as it seems.
Rovner: Yeah, OK. All right, one more thing that we will consider on our watch list. All right, well, that is this week’s news. Now we will play my interview with Jen Golbeck about her book on the science of dog love, and then we’ll come back and do our extra credits.
I am so excited to welcome to the podcast Jen Golbeck, a computer science professor at the University of Maryland who studies the internet for a living. She does serious research about some pretty grim corners of the online community, which we will talk about in a moment. But she’s probably better known on social media as “GR Mom,” head wrangler of The Golden Ratio media universe that brings the joy of her ever-changing pack of special-needs golden retrievers to her hundreds of thousands of followers every day, myself included, I have to say. Jen, thanks so much for being here.
Jen Golbeck: My pleasure. Thank you.
Rovner: So we’ll get to your new book, “The Purest Bond,” in a moment. But first, I know you spent a lot of time tracking the behavior of some of the most unpleasant and reprehensible people online. Is that part of why you started your little social media corner of happiness?
Golbeck: Yes. So I am very on social media. I’m a computer scientist by training. And after [President Donald] Trump got elected, everybody was angry online. Regardless of who you voted for, everyone was angry. And I just found myself needing an escape from that and I couldn’t really find it. And at the time, I had four golden retrievers and I was like, you know what? That can’t get much happier, so let’s just start putting pictures of them up.
So it was as much therapy for me as anything else, but it really ended up resonating with people and bringing together this wonderful community of people. And anybody who’s not nice, we block and keep them out of there. Things have not necessarily gotten better, but different, since 2016, 2017, and people still need that escape, including me. So yeah, it’s been a real balm in contrast to my regular research work to do that.
Rovner: Which is, you should say, looking at how hate spreads online. Is that a lot of what you do?
Golbeck: That’s pretty close, yeah. I think my technical term I use is malicious online behaviors. So we look at hate speech and extremism, misinformation, conspiracy theories, all that kind of stuff. So dogs are a really nice antidote to that.
Rovner: So with all the terrible things that go on online, I’m fascinated by the devotion of little groups of people who share interests and love to interact with each other. I still obviously have to be on Twitter, or whatever it’s called now, for my job. And I remember when I first met Matt Nelson, actually at your live show, who’s the creator of WeRateDogs (dogrates), I thanked him for making the online hellscape just a little bit less hellish. Do we underestimate how much online relationships can benefit people as much as cause mischief?
Golbeck: Yeah. The research on this is so interesting. Because since Facebook became a thing, we’ve been really interested in what’s the impact, the psychological impact, of social media? And the answer is always it’s super mixed, which is a kind of an academic cop-out answer, but totally true. There’s all kinds of ways that, obviously, the internet can harm people, and we see that now especially with Instagram and girls with eating disorders and body image issues. We know that generally people who spend a lot of time on social media are less happy than people who don’t.
So there are unquestionably some negative impacts, but it’s a little bit easy to forget, and some people weren’t even alive, when we didn’t have access to communities online and how profoundly isolating life could be and how difficult it was to get access to anything, especially social support. So now you can be in a very rural isolated space and very different from what the social mores of your community would dictate you should be. And that’s something where, in the 1990s, you probably would’ve ended up very lonely and depressed and totally unsupported. And with the internet, you’re not. You can find all kinds of people in exactly the same position as you and get that social support. And that’s an extreme example of what we find, which is you can form real relationships online. And that’s why I tend to resist this distinction between the real world and online. The real world absolutely exists online, and I’ve found lots of real friends who I’ve met offline, but also just keep up relationships with online, and it’s so important.
Rovner: So you and your husband, Ingo, don’t just take in rescue golden retrievers, you take in rescue golden retrievers that are often older and sicker and who have been the most neglected and the most mistreated. Was that something intentional or did it just happen?
Golbeck: It a little bit evolved that way. I got to say, I am always drawn to the seniors, and when I started fostering really wanted to get some seniors. That’s not most of the dogs that come into rescue, actually. It’s usually young dogs who people got and weren’t prepared for, and we fostered 20 of those dogs, too. But, eventually, we did get a pair of seniors. I always thought three dogs was too many, so we would have three with a foster. But I was like, I’ll never actually have three dogs. And then we got this bonded pair. Both were seniors, and so there were four dogs. And as soon as they showed up at my house, I was like, oh, they have always lived here. Now I have four dogs. What am I going to do? And it was great, of course. And about a year later, the rescue was like, “We have this 13-year-old and her people don’t want her. Will you take her?” And I asked my husband, I’m like, “What do you think about five dogs?” And he said, “What’s the difference between four and five? It’s fine.” So then we had five kind of old dogs, or old rescues, three of them were old rescues.
And I think, eventually, the rescue group started realizing that I’d just say yes to whatever they would give me. And so the dogs that they were having a hard time finding someone to take, I’d be like, “Yeah, sure, send them over.” It’s been so rewarding, though, to take these dogs who need a lot of love and attention and care and who haven’t been getting it and being able to give them the love and support and medical care that they need. It’s really rewarding. So I was interested, and then we stumbled our way into something that’s turned into a mission for both of us.
Rovner: So I know a lot has been written over the years about the science of how pets can improve human health and vice versa. I actually looked it up. I wrote my first pet therapy story in 1982. I was 5. No, seriously, it was my first job out of college. But you’ve done something with this book that I haven’t really seen before. You’ve merged a lot of the scientific study with some actual practical advice for pet owners. I assume that was very much on purpose.
Golbeck: Yeah. We didn’t want this to be a self-help book or a dog-training book. At the same time, there’s a lot of things that people want to know as they’re discovering the science of how they bond with their dogs. And so we try to work a little bit of tips in there, along with a lot of science and then stories from people who have really seen those benefits in their everyday relationship with their dogs.
Rovner: What’s been the response?
Golbeck: It’s interesting. I was like, I don’t know that all of this is super surprising. There are some surprising results in there. At the same time, what we’re basically saying is that dogs make us feel good and they love us back and we love them a whole lot. And I think anybody who has a dog knows that that’s true. And the response has been consistently people saying, “I was so excited to see my experience reflected in there.”
So we have, for example, a chapter about dogs in the community and how if you have a dog, you meet everybody in your neighborhood by walking your dog. And you don’t even know their names. You maybe know their dogs’ names. And people are like, “Oh yeah, that’s totally it.” But they also feel really validated because we have these feelings about our relationship with our dogs, and some people tell us that we’re crazy. Some people say that we’re making it up. And what people are finding in the book is that there’s actually a ton of really rigorous scientific research to support them having those feelings that they already have. So it’s this great way of being like, “Yes, I’m not crazy. My dog really does love me back. This really is as deep as I feel like it is.” So that’s been a great response that I wasn’t necessarily expecting that’s what it would be.
Rovner: Well, good. Well, Jen Golbeck, thank you for the book. Thank you for all you do. Thank you for what you do for golden retrievers and for the rest of us dog lovers out in the community.
Golbeck: My pleasure. Thanks 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. Alice, why don’t you go first this week?
Ollstein: Yes. I chose a really upsetting and important investigation by my colleague Ariel Wittenberg. It hits at the intersection of health, labor, climate. It’s about mail carriers around the country who are dying from heat exposure. This is actually killing more male carriers than car crashes or dog bites or any of the things you think of being the hazards of that job. And not only is this happening amid soaring temperatures in the summers in a lot of places in the South, but the Postal Service is not following its own rules for training workers on how to notice the signs of dangerous heat exposure and take steps to protect themselves. And not only are they lying, according to these documents she obtained about having done these trainings, they are pressuring these workers to move faster, to not take breaks because of the competition from other private delivery services like Amazon. So really, really important piece.
Rovner: Yeah, and I think also important for everybody who works outside, with climate change. Riley, why don’t you go next?
Griffin: Yes, my colleague Robert Langreth also has a story in this week’s Bloomberg Businessweek issue, and it is titled “The Next Blockbuster Drug Might Be Made in Space.” It’s a fun one. It describes how companies, including Big Pharma names like Eli Lilly, are using microgravity to develop drugs and improve formulations of existing blockbusters. So it’s a fun read. You can find it in print or online.
Rovner: Not everything in tech is bad. Lauren.
Griffin: Not everything is bad.
Weber: I’m continuing the trend of shouting-out my colleagues this week. So a bunch of my colleagues had an investigation titled “Applesauce Lead Cases in Kids Surge Amid Questions on FDA Oversight.” And so we’ve all heard about these applesauce packets for toddlers and babies that were contaminated with lead, but the official FDA numbers say it’s only like 60-something cases, but my colleagues called around the state health departments and they believe it’s at least suspected in over 118 cases, potentially more, which leads to the question of how widespread is all of this.
It lends itself to the questions of: Is the FDA’s oversight enough, especially when it comes to baby food? This is not the first baby food issue we’ve obviously had in the last couple years. It really is just a horror story for everyone. I mean, you’re just trying to feed your kids stuff that they like and then they’re sucking on something that could damage their brain development and hurt them for years to come. Really heart-rending storyline, and my colleagues did a great job showing that this is much further-reaching than has been previously disclosed.
Rovner: So another continuing theme of this year, the FDA’s regulation of food as opposed to the FDA’s regulation of drugs and how that sometimes falls by the wayside. Well, my story is also from The Washington Post, by Kent Babb. It’s called “They Watched Their Husbands Win the Heisman — Then Lost Them to CTE.” And it’s a really wrenching story about how the very best players in college football have something else in common besides athletic talent: That, over the years, more and more have joined the not-so-exclusive club of ex-players with brain injuries and related behavioral … excuse me. Over the years, more and more have joined the not-so-exclusive club of ex-players with brain injuries and related behavioral issues.
It’s the serious dark side of a sport that is so beloved in the United States, including by me, and that deserves not just a hard look but action to prevent some of these horrendous aftereffects.
OK, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to Francis Ying for his technical expertise and amazing patience. 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. Alice.
Ollstein: I’m @AliceOllstein on X and @alicemiranda on Bluesky.
Rovner: Lauren.
Weber: I’m @LaurenWeberHP on X and clearly need to improve the rest of my social media profiles.
Rovner: Riley.
Griffin: You can find me on Threads and X @rileyraygriffin.
Rovner: We will be back in your feed next week. Until then, be healthy.
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KFF Health News' 'What the Health?': Democrats See Opportunity in GOP Threats to Repeal Health Law
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Julie Rovner
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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.
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.
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Anna Edney
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Alice Miranda Ollstein
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Rachana Pradhan
KFF Health News
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.
Pradhan: I’m @rachanadpradhan on X.
Rovner: Alice.
Ollstein: I’m @AliceOllstein on X, and @AliceMiranda on Bluesky.
Rovner: We will be back in your feed next week. Until then, be healthy.
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KFF Health News' 'What the Health?': Trump Puts Obamacare Repeal Back on Agenda
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Julie Rovner
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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.
Former president and current 2024 Republican front-runner Donald Trump is aiming to put a repeal of the Affordable Care Act back on the political agenda, much to the delight of Democrats, who point to the health law’s growing popularity.
Meanwhile, in Texas, the all-Republican state Supreme Court this week took up a lawsuit filed by more than two dozen women who said their lives were endangered when they experienced pregnancy complications due to the vague wording of the state’s near-total abortion ban.
This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of Johns Hopkins University and Politico Magazine, Victoria Knight of Axios, and Sarah Karlin-Smith of the Pink Sheet.
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Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico
Victoria Knight
Axios
Sarah Karlin-Smith
Pink Sheet
Among the takeaways from this week’s episode:
- The FDA recently approved another promising weight loss drug, offering another option to meet the huge demand for such drugs that promise notable health benefits. But Medicare and private insurers remain wary of paying the tab for these very expensive drugs.
- Speaking of expensive drugs, the courts are weighing in on the use of so-called copay accumulators offered by drug companies and others to reduce the cost of pricey pharmaceuticals for patients. The latest ruling called the federal government’s rules on the subject inconsistent and tied the use of copay accumulators to the availability of cheaper, generic alternatives.
- Congress will revisit government spending in January, but that isn’t soon enough to address the end-of-the-year policy changes for some health programs, such as pending cuts to Medicare payments for doctors.
- “This Week in Medical Misinformation” highlights a guide by the staff of Stat to help lay people decipher whether clinical study results truly represent a “breakthrough” or not.
Also this week, Rovner interviews KFF Health News’ Rachana Pradhan, who reported and wrote the latest “Bill of the Month” feature, about a woman who visited a hospital lab for basic prenatal tests and ended up owing almost $2,400. If you have an outrageous or baffling medical bill you’d like to share with us, you can do that here.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: KFF Health News’ “Medicaid ‘Unwinding’ Makes Other Public Assistance Harder to Get,” by Katheryn Houghton, Rachana Pradhan, and Samantha Liss.
Joanne Kenen: KFF Health News’ “She Once Advised the President on Aging Issues. Now, She’s Battling Serious Disability and Depression,” by Judith Graham.
Victoria Knight: Business Insider’s “Washington’s Secret Weapon Is a Beloved Gen Z Energy Drink With More Caffeine Than God,” by Lauren Vespoli.
Sarah Karlin-Smith: ProPublica’s “Insurance Executives Refused to Pay for the Cancer Treatment That Could Have Saved Him. This Is How They Did It,” by Maya Miller and Robin Fields.
Also mentioned in this week’s episode:
- KFF Health News’ “Progressive and Anti-Abortion? New Group Plays Fast and Loose to Make Points,” by Darius Tahir.
- ProPublica’s “Some Republicans Were Willing to Compromise on Abortion Ban Exceptions. Activists Made Sure They Didn’t,” by Kavitha Surana.
click to open the transcript
Transcript: Trump Puts Obamacare Repeal Back on Agenda
KFF Health News’ ‘What the Health?’Episode Title: Trump Puts Obamacare Repeal Back on AgendaEpisode Number: 324Published: Nov. 30, 2023
[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]
Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Nov. 30, at 10 a.m. As always, news happens fast, and things might’ve changed by the time you hear this. So, here we go.
We are joined today via video conference by Sarah Karlin-Smith of the Pink Sheet.
Sarah Karlin-Smith: Hi, Julie.
Rovner: Victoria Knight of Axios News.
Victoria Knight: Hello, everyone.
Rovner: And Joanne Kenen of the Johns Hopkins University and Politico Magazine.
Joanne Kenen: Hi, everybody.
Rovner: Later in this episode we’ll have my interview with my colleague Rachana Pradhan about the latest KFF Health News-NPR “Bill of the Month.” This month’s patient fell into an all-too-common trap of using a lab suggested by her doctor’s office for routine bloodwork without realizing she might be left on the hook for thousands of dollars. But first, this week’s news — and last week’s, too, because we were off.
Because nothing is ever gone for good, the effort to repeal and replace Obamacare is back in the news, and it’s coming primarily from the likely Republican presidential nominee, Donald Trump. Just to remind you, in case you’ve forgotten, Trump, during his presidency, even in the two years that Republicans controlled the House and the Senate, was unable to engineer a repeal of the Affordable Care Act, nor did his administration even manage to unveil an alternative. So what possible reason could he have for thinking that this is going to help him politically now?
Knight: My takeaway is that I think it’s a personal grudge that former President Trump still has, that he failed at this. And I think, when you talk to people, he’s still mad that Sen. John McCain did his famous thumbs-down when the rest of the Republican Party was on board. So I’m not sure that there is much political strategy besides wanting to just make it happen finally, because upset it didn’t happen.
Rovner: Is this part of his revenge tour?
Knight: I mean, I think somewhat. Because if you ask House Freedom Caucus people, they will say, “Yeah, we should repeal it.” But if you ask some more moderate Republican members, they’re like, “We’ve already been through that. We don’t want to do it again.” So I don’t think the Republican Party on the Hill has an appetite to do that, even if Congress goes to Republicans in both chambers.
Kenen: Trump never came up with a health plan and repeal died in the Senate, but remember, it was a struggle to even get anything through the House, and what the House Republicans finally voted for, they didn’t even like. So I don’t know if you call this a revenge tour, but it’s checking a box. But I think it’s important to remember that if you look closely at what Republican policies are, they don’t call it repeal, they don’t say, “We are going to repeal it.” That didn’t go so well for them, and it probably cost them an election.
But they still do have a lot of policy ideas that would water down or de facto repeal many key provisions of Obamacare. So they haven’t tried to go that route, and I’m not sure they would ever try a full-out repeal, but there are lots of other things they could do, some of which would have technical names: community rating and things like that, that voters might not quite understand what they were doing, that could really undermine the protections of Obamacare.
Rovner: Yeah, I mean, I was going to say the Republican Party, in general, this has been the running joke since they started “repeal and replace” in 2010, is that they haven’t had the “replace” part of “repeal and replace” at all. Trump kept saying he was going to have a great plan, it’s coming in two weeks, and, of course, now he’s saying he’s going to have a great plan. We’ve never seen this great plan because the Republicans have never been able to agree on what should come next. Aside from, as Joanne says, tinkering around with the Affordable Care Act.
Kenen: Some of that tinkering would be significant.
Rovner: It could be.
Kenen: I mean there are things that they could tinker that wouldn’t be called repeal, but would actually really make the ACA not work very well.
Rovner: But most of the things that the Republicans wanted to do to the ACA have already been done, like repealing the individual mandate, getting rid of a lot of the industry-specific taxes that they didn’t like.
Kenen: Right. So they ended up getting rid of the spinach and they end up with the stuff that even Republicans, they might not say they like the ACA, but they’re being protected by it. And the individual mandate was the single-most unpopular, contentious part of the law and even a lot of Democrats didn’t like it. And so that target of the animus is gone. So by killing part of it, they also made it harder to do things in the future. They could do damage, though.
Rovner: Yeah. Or they could take on entitlements which, of course, is where the real money is. But we’ll get to that in a minute. Sarah, we have not seen you in a while, so we need to catch up on a bunch of things that are FDA-related. First, a couple of payment items since you were last here. The FDA has, as expected, approved a weight loss version of the diabetes drug Mounjaro that appears to be even more effective than the weight loss version of Ozempic. But insurers are still very reluctant to pay for these drugs, which are not only very expensive, they appear to need to be consumed very long-term, if not forever. Medicare has so far resisted calls to cover the drugs, despite some pressure from members of Congress, but that might be about to change.
Karlin-Smith: I think Medicare is getting a lot of pressure. They’re going to have to probably re-look at it at some point. What I found interesting is recently CMS [the Centers for Medicare and Medicaid Services] regulates other types of health plans as well, and in the ACA space they seem to be pushing for coverage of these obesity drugs. And I think they’re thinking around that. They note that the non-coverage allowance for these ACA plans was based on … they were following what Medicare was doing and there’s some acknowledgment that maybe the non-Medicare population is different from the Medicare population. But I think it’s also worth thinking about some of their other reasoning for coverage there, including that these drugs are different than some of the older weight loss drugs that provided more minimal weight loss, had worse side effects, and it came at a time when weight loss was seen as more of a cosmetic issue. So if that ACA provision rule goes through, I think that does help the case for people pushing for coverage in Medicare Part D of these drugs.
Rovner: Yeah, I mean this seems to be one of these “between a rock and a hard place” … that the demand for these drugs is huge. The evidence suggests that they work very well and that they work not just to help people lose weight, but perhaps when they lose weight to be less likely to have heart attacks and strokes and all that other stuff that you don’t want people to have. On the other hand, at the moment, they are super expensive and would bankrupt insurance companies and Medicare.
Karlin-Smith: Right. I mean, we’ve seen this before where people worry there’s a new class of expensive drugs that a lot of people seem like they will need and it’s going to bankrupt the country, and oftentimes that doesn’t happen even whether it is, in theory, more coverage to some extent. We saw that with hep C. There was a new class of cholesterol drugs that came out a few years ago that just haven’t taken off in the way people worried they would. Some of these obesity drugs, they do work really well, not everybody really tolerates them as well as you would think. So there’s questions about whether that demand is really there. Sen. [Bill] Cassidy [R-La.] has made some interesting points about “Is there a way to use these drugs initially for people and then come up with something more for weight maintenance that wouldn’t be as expensive?”
Rovner: We should point out that Sen. Cassidy is a medical doctor.
Karlin-Smith: But I think the pressure is coming on the government. Recently, I got to hear the head of OPM [Office of Personnel Management], who deals with the insurance coverage for federal government employees, and they have a really permissible coverage of obesity drugs. Basically, they require all their health insurance plans to cover one of these GLP-1 drugs, and they have some really interesting language I’ve seen used by pharmaceutical companies to say, “Look, this part of the federal government has said obesity is a disease. It needs to be treated,” and so forth. So I don’t think the federal government is going to be able to use this argument of, “This is not a medical condition, and these are expensive, we’re not going to cover it.” But there’s definitely going to be tensions there in terms of costs.
Rovner: Well, definitely more to come here. Meanwhile, CMS is also looking at changing the rules, again, for some pharmacy copay assistance programs, which claim to assist patients but more often seem to enrich drug companies and payers. What is this one about? And can you explain it in English? Because I’m not sure I understand it.
Karlin-Smith: So most people, when you get a prescription for a drug, have some amount of copay, so your insurance company pays the bulk of the cost and you pay maybe $10, $20, $30 when you pick up your prescription. For really high-cost drugs, pharmaceutical companies and sometimes third-party charities often offer copay support, where they will actually pay your copay for you.
The criticism of these charities and pharma support is that it lets the companies keep the prices higher. Because once you take away the patient feeling the burden of the price, they can still keep that higher percentage that goes to your health plan and into your premiums that you don’t think about. And so health insurance companies have said, “OK, well we’re not going to actually count this coupon money towards your copay, your out-of-pocket max for the year, because you’re not actually paying it.”
So that doesn’t end up doing the patient much good in the end because, while you might get the drug for free the first part of the year, eventually you end up having to pay the money. The courts have weighed in, and the latest ruling was that the effect of it was essentially telling CMS, “You need to re-look at your rules. We don’t think your logic is consistent,” and they seem to potentially suggest that CMS should only allow copay accumulators if there’s a cheaper drug a patient could take.
So, basically, they’re saying it’s unfair to put this burden on patients and not let them benefit from the coupons if this is the only drug they can take. But if there’s a generic drug they should be taking, that’s the equivalent then, OK, insurance company, you can penalize them there. But interestingly, CMS has basically pushed back on the court ruling. They’re asking them for basically more information about what they’re exactly directing them to do and signaling that they want to keep their broader interpretation of the law.
It’s a tricky situation, I think, policy-wise, because there’s this tension of, yes, the drug prices are really high. The insurance companies have a point of how these coupons create these perverse incentives in the system, and, on the other hand, the person that gets stuck in the middle, the patient is not really the fair pawn in this game. And when talking about a similar topic with somebody recently, they brought up what happened with surprise billing and they made this parallel of we need to think about it as, OK, you big corporate entities need to figure out how to duke out this problem, but stop putting the patient in the middle because they’re the one that gets hurt. And that’s what happened in surprise billing. I’m not sure if there’s quite that solution of how you could do that in this pharmaceutical space though.
Rovner: I was just going to say that this sounds exactly like surprise billing, but for prescription drugs. Well, while we are talking about Capitol Hill, let’s turn to Capitol Hill, where the big news of the week is that House Republican conservatives, the so-called Freedom Caucus, have apparently agreed to abide by the deal they agreed to abide by earlier this year. At least that’s when it comes to the overall total for the annual spending bills. Then-Speaker [Kevin] McCarthy’s attempt to adhere to that deal is one of the things that led to his ouster. The conservatives had wanted to cut spending much more deeply than the deal that was cut, I think it was in May. Although I feel compelled to add: Cutting the appropriations bills, which is what we’re talking about here, doesn’t really do very much to help the federal budget deficit. Most of the money that the federal government spends doesn’t go through the appropriations process. It’s automatic, like Social Security and Medicare.
But I digress. Victoria, what prompted the Freedom Caucus to change their minds and what does that portend for actually getting some of these spending bills done before the next cutoff deadline, which is mid-January?
Knight: I mean, I think it’s the Freedom Caucus just facing reality and that it’s really hard to do budget cuts, and a lot of these bills, the cuts are very deep. For the Labor-HHS bill, which is the bill that funds the Department of Health and Human Services, the cut is 18%. To the CDC [Centers for Disease Control and Prevention], 12% to the department itself. Those are really big cuts. And all the bills, you look at them, they all have really deep cuts.
The agriculture bill has deep cuts to the Department of Agriculture that some moderate Republicans don’t like. So all of the bills have these issues, and so I think they’re realizing it is just not possible to get what they want. Some of them didn’t vote for the Fiscal Responsibility Act, which was the deal that former Speaker McCarthy did with the debt limit that set funding levels. So they’re not necessarily going back on something that they voted for.
Rovner: They’re going back on something that the House voted for.
Knight: Yeah. So yeah, I think they’re just realizing the appropriations process, it’s difficult to make these deep spending cuts. I’ve also heard rumors that there might still be a big omnibus spending bill in January. Despite all this talk of doing the individual appropriations bills, I’ve heard that it may end up, despite all the efforts of the Republican Caucus, it may end where they have to just do a big bill because this is the easiest thing to do and then move on to the rest of the business of Congress for the next year. So we’ll see if that happens. But I have heard some rumors already swirling around that.
Rovner: I mean the idea they have now “agreed” to a spending limit that should have been done in the budget in April, which would’ve given them several months to work on the appropriations bills coming in under that level. And, of course, now we’re almost three months into the new fiscal year, so I mean they’re going to be late starting next year unless they resolve this pretty soon. But in the meantime, one thing that won’t happen is that we won’t get a big omnibus bill before Christmas because the deadline is now not until January, and that’s important for a bunch of health issues because we have a lot of policies that are going to end at the end of the year. Things like putting off cuts in Medicare payments to doctors, which a lot of people care about, including, obviously, all the doctors. Is there a chance that some of these “extender provisions” will find their way onto something else, maybe the defense authorization bill that I think they do want to finish before Christmas?
Knight: Yeah, I think that’s definitely possible. I’ve also heard they can retroactively do that, so even if they miss the deadline, it will probably be fixed. So it doesn’t seem like too big a worry,
Rovner: Although those doctor cuts, I mean, what happens is that CMS pens the claims, they don’t pay the claims until it’s been fixed retroactively. They have done it before, it’s a mess.
Kenen: And it’s bad for the doctors because they don’t get paid. It takes even longer to get paid because they’re put in a hold pile, which gets rather large.
Rovner: It does. Not that the defense bill doesn’t have its own issues around defense, but while we’re on the subject of defense, it looks like Alabama Republican Sen. Tommy Tuberville might be ready to throw in the towel now on the more than 400 military promotions he’s been blocking to protest the Biden administration’s policy allowing members of active-duty military and their dependents to travel to other states for an abortion if it’s banned where they are stationed. This has been going on since February. My impression is that it’s his fellow Republicans who are getting worried about this.
Kenen: Yeah. They’re as fed up as the Democrats are now. Not 100% of them are, but there’s a number who’ve come out in public and basically told him to cut it out. And then there are others who aren’t saying it in public, but there are clearly signs that they’re not crazy about this either. But we keep hearing it’s about to break. We’ve been hearing for several weeks it’s about to be resolved, and until it’s resolved, it’s not resolved. So I think clearly there’s movement because the pressure has ramped up from his fellow Republicans.
Rovner: Well, to get really technical, I think that the Senate Rules Committee passed a resolution that could get around this whole thing-
Kenen: But they don’t really want to, I mean the Republicans would rather not confront him through a vote. They’d rather just stare him down and get him to pretend that he won and move on. And that’s what we’re waiting to see. Is it a formal action by the Senate or is there some negotiated way to move forward with at least a large number of these held-up nominations.
Rovner: It’s the George Santos-Bob Menendez health issue. In other words, they would like him to step down himself rather than have to vote to take it down, but they would definitely like him to back off.
Kenen: I mean, not confusing anybody but they’re not talking about expelling her from the Senate. They’re [inaudible] talking about “Cut this out and let these people get their promotions,” because some of them are very serious. These are major positions that are unfilled.
Rovner: Yes, I mean it’s backing up the entire military system because people can’t move on to where they’re supposed to go and the people who are going to take their place can’t move on to where they’re supposed to go, and it’s not great for the Department of Defense. All right, well, while we are on the subject of abortion, at least tangentially, the Texas Supreme Court this week heard that case filed by women who had serious pregnancy complications for which they were unable to get medical care because their doctors were afraid that Texas’ abortion ban would be used to take their medical licenses and/or put them in jail.
Kenen: For 99 years!
Rovner: Yeah, the Texas officials defending against the lawsuit say the women shouldn’t be suing the state. They should be suing their doctors. So what do we expect to happen here? This hearing isn’t even really on the merits. It’s just on whether the exceptions the lower court came up with will be allowed to take effect, which at the moment they’re not.
Kenen: The exception-by-exception policy, where things get written in, is problematic because it’s hard to write a law allowing every possible medical situation that could arise and then that would open it to all other litigation because people would disagree about is this close to death or not? So the plaintiffs want a broader, clearer exception where it’s up to the doctors to do what they think is correct for their patients’ health, all sorts of things can go wrong with people’s bodies.
It’s hard to legislate, which is OK and which isn’t. So the idea of suing your doctor, I mean, that’s just not going to go anywhere. I mean, the court is either going to clarify it or not clarify it. Either way, it’ll get appealed. These issues are not going away. There’s many, many, many documented cases of people not being able to get standard of care. Pregnancy complications are rare, but they’re serious and the state legislatures have been really resistant so far to broadening these exemptions.
Rovner: It’s not just Texas. ProPublica published an investigation this week that found that none of the dozen states with the strictest abortion bans broadened exceptions even after women and their doctors complained that they were being put at grave risk, as Joanne just pointed out. When we look at elections and polls, it feels like the abortion rights side very much has the upper hand, but the reverse seems to be the case in actual state legislatures. I mean, it looks like the anti-abortion forces who want as few exceptions as possible are still getting their way. At least that’s what ProPublica found.
Kenen: Right. One of the other points that the ProPublica piece made was many of these laws were trigger laws. They were written before Roe was toppled. They were written as just in case, if the Supreme Court lets us do this, we’ll do it. So they were symbolic and they were not necessarily written with a lot of medical input. And they were written by activists, not physicians or obstetricians.
And the resistance to changing them is coming from the same interest groups that want no abortions, who say it’s just not ever medically necessary or so rarely medically necessary, and it is medically necessary at times. I mean, there are people who, and this line saying, “Well, if you’re in trouble, you can’t have an abortion. But if you’re close to death you can,” that can happen in split seconds. You can be in trouble and then really be in real trouble. You can’t predict the course of an individual, and it’s tying the hands for physicians to do what needs to be done until it might be too late.
Knight: I think a lot of them don’t realize, until it starts happening, how many times it is sometimes medically necessary. It’s not even that a woman necessarily wants to get an abortion, it’s just something happens, and it’s safer for her to do that in order to save her life.
Karlin-Smith: And you’ve seen in some of these states, sometimes Republican women prominently coming out and pushing for this and trying to explain why it’s necessary. In some cases, they also have made the argument, too, that sometimes to preserve a woman’s fertility, these procedures are necessary given the current situations they face.
Kenen: There was a quote in that ProPublica story, and it’s not necessarily everybody on the anti-abortion rights side, but this individual was quoted as saying that the baby’s life is more important than the mother’s life. So that’s a judgment that a politician or activist is making. Plus, if the mother dies, the fetus can die too. So it doesn’t even make sense. It’s not even choosing one. I mean, in many cases if the pregnant person dies, the fetus will die.
Rovner: Well, finally this week, I want to give a shout-out to a story by my KFF Health News colleague Darius Tahir, who, by the way, became a father this week. Congratulations, Darius. The story’s about a group called the Progressive Anti-Abortion Uprising that purports to be both anti-abortion and progressively leftist and feminist. One of its goals appears to be to get courts to overturn the federal law that restricts protests in front of abortion clinics. The Freedom of Access to Clinic Entrances Act, known as FACE, is I think the only explicitly abortion rights legislation that became law in the entire 1990s, which makes you wonder if this group is really as leftist and feminist as it says it is, or if it’s just a front to try and go after this particular law.
Kenen: It sets limits of where people can be and tries to police it somewhat. But in Darius’ story, his reporting showed that they did, at least some of them, had ties to right-wing groups. So that they’re calling themselves leftist and progressive … it’s not so clear how accurate that is for everybody involved.
Rovner: Yeah, it was an interesting story that we will link to in the show notes. All right, now it is time for “This Week in Health Misinformation,” and it’s good news for a change. I chose a story from Stat News called “How to Spot When Drug Companies Spin Clinical Trial Results.” It’s actually an update of a 2020 guide that STAT did to interpret clinical trial results, and it’s basically a glossary to help understand company jargon and red flags, particularly in press releases, to help determine if that new medical “breakthrough” really is or not. It is really super helpful if you’re a layperson trying to make sense of this.
OK that is this week’s news, and I now will play my “Bill of the Month” interview with Rachana Pradhan, and then we will come back with our extra credits.
I am pleased to welcome back to the podcast my colleague Rachana Pradhan, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Always great to see you, Rachana.
Rachana Pradhan: Thanks for having me, Julie.
Rovner: So this month’s patient fell into what’s an all-too-common trap. She went to a lab for routine bloodwork suggested by her doctor without realizing she could be subjected to thousands of dollars in bills she’s expected to pay. Tell us who she is and how she managed to rack up such a big bill for things that should not have cost that much.
Pradhan: So our patient is Reesha Ahmed. She lives in Texas, just in a suburb of the Dallas-Fort Worth area, and what happened to Reesha is she found out she was pregnant and she went to a doctor’s office that she had never gone to before for a standard prenatal checkup, and she also had health insurance. I want to underscore that that is an important detail in this story. So the nurse recommended that Reesha get routine blood tests just down the hall in a lab that was in the adjoining hospital. And it was routine. There was nothing unusual about the blood tests that Reesha received. So what she was advised to do is after her checkup, she was told, “Well, here’s the bloodwork you need, and just go down the hallway here, into the hospital,” to get her blood drawn.
Rovner: How convenient, they have their own lab.
Pradhan: Exactly. And Reesha did what she was told. She got bloodwork done. And then, soon after that, she started getting bills. And they first were small amounts, like there was a bill for $17, and she thought, “OK, well that’s not so bad.” Then she got a bill for over $300 and thought, “That’s unusual. Why would I get billed this?” Then came the huge one. It was over $2,000. In total, Reesha’s overall lab work bills were close to $2,400 for, again, standard bloodwork that every pregnant woman gets when they find out that they’re pregnant. And so she, needless to say, was shocked and immediately actually started trying to investigate herself as to how it was possible for her to get billed such astronomical amounts.
Rovner: And so what did she manage to find out?
Pradhan: She tried taking it up with the hospital and her insurance company. And she just got passed around over and over again. She appealed to her insurance. They denied her appeal saying that, “Well, this bloodwork was diagnostic and not preventive, so it was coded correctly based on the claim that was submitted to us,” and the hospital even sent her to collections for this bloodwork. Unfortunately for Reesha, this pregnancy ended in a miscarriage, and so it was particularly difficult. She was dealing with all the emotional, physical ramifications of that, and then on top of that, having to deal with this billing nightmare is just a lot for any one person to handle. It’s too much, honestly.
Rovner: So we, the experts in this, what did we discover about why she got billed so much?
Pradhan: You can get bloodwork at multiple places in our health system. You could get it maybe within a lab just in your doctor’s office. You can go to an outside lab, like an independent commercial one, to get bloodwork done and you can sometimes get labs within a hospital building. They may not look any different when you’re actually in there, but there’s a huge difference as to how much they will charge you.
Research has shown that if a patient is getting blood tests done, things that are relatively routine and just as a standalone service, hospital outpatient department labs charge much, much more. There’s research that we cite in the story about Reesha that … she lives in Texas … bloodwork in Texas, if it’s done in a hospital outpatient department is at least six times as expensive compared to if you get those same tests in a doctor’s office or in an independent commercial lab.
Rovner: To be clear, I would say it’s not just bloodwork. It’s any routine tests that you get in a hospital outpatient department.
Pradhan: That research, in particular, was looking at blood tests actually, in particular, just any lab work that you might get done. So the conclusion of that is really that there’s no meaningful quality difference. There’s really no difference at all when you get them in a doctor’s office versus a hospital or a lab, and yet the prices you pay will vary dramatically.
Rovner: Yeah, there should be a big sign on the door that says: “This may be more convenient, but if you go somewhere else, you might pay a lot less and so will your insurance.” What eventually happened with Reesha’s bill?
Pradhan: Well, eventually, the charges were waived and zeroed out and she was told that she would not have to pay anything and all the accounts would be zeroed out to nothing.
Rovner: Eventually, after we started asking questions?
Pradhan: Yes. It was a day after I had sent a litany of questions about her billing that they gave her a call and said, “You now won’t have to pay anything.” So it’s a big relief for her.
Rovner: Obviously this was not her fault. She did what was recommended by the nurse in her doctor’s office, but there are efforts to make this more transparent.
Pradhan: Yeah. I think in health care policy world, the issue that she experienced is a reflection of something called site-neutral payment, which essentially means if payment is site-neutral for a health care provider, it means that you get a service and regardless of where you get that service, there is no difference in the amount that you are paying. There are efforts in Congress and even in state legislatures to institute site-neutral pay for certain services.
Bloodwork is one that is not necessarily being targeted, at least in Congress. But I will say, I think one of the big takeaways about what patients can do is if they do get paperwork from your doctor’s office saying, “OK, you need to get some blood tests done,” you can always take that bloodwork request and get it done at an independent lab where the charges will be far, far less than in a hospital-based lab, to avoid these charges.
Rovner: Think of it like a prescription.
Pradhan: Exactly. It might not be as convenient in that moment. You might have to drive somewhere, you can’t just walk down a hallway and get your blood tests and labs done, but I think you will potentially avoid exorbitant costs, especially for bloodwork that is very standard and is not costly.
Rovner: Yet another cautionary tale. Rachana Pradhan, thank you very much.
Pradhan: Thanks for having me, Julie.
Rovner: OK. We are back and it’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Sarah, you offered up the first extra credit this week. Why don’t you go first?
Karlin-Smith: Sure. I took a look at a ProPublica piece by Maya Miller and Robin Fields, “Insurance Executives Refused to Pay for the Cancer Treatment That Could Have Saved Him. This Is How They Did It.” And it tells the story of a Michigan man who had cancer, and the last resort treatment for him was CAR-T, which is a cellular therapy where they basically take some of your cells, reengineer them, and put them back into your body, and it is quite expensive and it can come with a lot of expensive side effects as well.
FDA considers it a drug, and Michigan state law requires cancer drugs be covered. The insurance company of this man, basically on a technicality, denied it, describing it as a gene therapy, and he did die before he was able to fully push this battle with the insurance company and get access to the treatment and so forth. But I think the piece raises these broader issues about [how] few states are able to proactively monitor whether insurance plans are properly implementing the laws around what is supposed to be covered and not covered.
Few people really have the knowledge or skill set, particularly when you’re dealing with devastating diseases like cancer, which are just taking all of your energy just to go through the treatment, to figure out how to fight the system. And it really demonstrates the huge power imbalances people face in getting health care, even if there are laws that, in theory, seem like they’re supposed to be protected.
I also thought there’s some really interesting statistics in the story about, yes, even though the price tag for these products are really expensive, that the health insurance company actually crunched the numbers and found that if they shifted the cost to premiums in their policyholders, it would lead to, like, 17 cents a month per premium. So I thought that was interesting, as well, because it gives you a sense of, again, where their motivation is coming from when you boil it down to how the costs actually add up.
Rovner: And we will, I promise, talk about the growing backlash against insurance company behavior next week. Victoria.
Knight: So my extra-credit article is a Business Insider story in which I’m quoted, but the title is “Washington’s Secret Weapon Is a Beloved Gen Z Energy Drink With More Caffeine Than God.” And it basically talks about the phenomenon of Celsius popping up around the Hill. So it’s an energy drink that contains 200 milligrams of caffeine. It tastes like sparkling water, it’s fruity, but it’s not like Monster or Red Bull. It tastes way better than them, which I think is partly why it’s become so popular.
But anyways, I’ve only been on the Hill reporting for about a year and in the past couple months it has really popped up everywhere. It’s all around in the different little stores within the Capitol complex, there’s machines devoted to it. So it talks about how that happened. And I personally drink almost one Celsius a day. I’m trying to be better about it, but the Hill is a hard place to work, and you’re running around all the time, and it just gets you as much caffeine as you need in a quick hit. But the FDA does recommend about 400 milligrams a day. So if you drink two, then you’re not going over the recommendation.
Rovner: Well, you can’t drink anything else with caffeine if you drink two.
Knight: That’s true. And I do drink coffee in the morning, but it has some funny quotes to our members of Congress and chiefs of staff and reporters about how we all rely on this energy drink to get through working on the Hill.
Rovner: I just loved this story because, forever, people wonder how these things happen in the middle of the night. It’s not the members, it’s the staff who are going 16 and 20 hours a day, and they’ve always had to rely on something. So, at least now, it’s something that tastes better.
Knight: It does taste better.
Rovner: That’s why it amused me, because it’s been ever thus that you cannot work the way Capitol Hill works without some artificial help, shall we say. Joanne.
Kenen: We used to just count how many pizza boxes were being delivered to know how long a night it was going to be. I guess now you count how many empty cans of Celsius.
Knight: Exactly.
Rovner: I personally ran more on sugar than caffeine.
Kenen: OK. This is a piece by Judy Graham of KFF Health News, and the headline is “A Life-Changing Injury Transformed an Expert’s View on Disability Services.” And it’s about a woman many of us know, actually Julie and I both know: Nora Super. I’ve known her for a long time. She’s an expert on aging. She ran one of the White House aging conferences. She worked at Milken for a long time. She worked at AARP for a while.
She’s in her late 50s now, and in midlife, she started having really severe episodes of depression, and she became very open about it, she became an advocate. Last summer, she had another episode and she couldn’t get an appointment for the treatment she needed quickly enough. And while she was waiting, which is the story of American health care right now, and while she was waiting for it, she did try to take her own life. She survived, but she now has no sensation from the waist down.
And her husband is a health economist, and I should disclose, my former boss at one point, I worked for and with Len for two years, Len Nichols. So this is a story about how she has now become an advocate for disability. And this is a couple with a lot of resources. I mean both knowledge, connections, and they’re not gazillionaires, but they have resources, and how hard it has been for them even with their resources and connections. And so now Nora who, when she’s well, she’s this effervescent force of nature, and this is how she is turning — her prognosis, it could get better, they don’t know yet — but clearly an extraordinarily difficult time. And she has now taken this opportunity to become not just an advocate for the aging and not just an advocate for people with severe depression, but now an advocate for people with severe disability.
Rovner: Yeah, I mean, it’s everything that’s wrong with the American health care system, and I will say that a lot of what I’ve learned about health policy over very many years came from both Len Nichols and Nora, his wife. So they do know a lot. And I think what shocked me about the story is just how expensive some of the things are that they need. And, again, this is a couple who should be well enough off to support themselves, but these are costs that basically nobody could or should have to bear.
Kenen: Even … it was just a lift to get her into their car, just that alone was $6,500. And there are many, many, many things like that. And then another thing that they pointed out in the article is that most physicians don’t have a way of getting somebody from a wheelchair onto the examining table other than having her 70-year-old husband hoist her. So that was one of the many small revelations in this story. Obviously, it’s heartbreaking because I know and like her, but it’s also another indictment of why we just don’t do things right.
Rovner: Yes. Where we are. Well, my story is yet another indictment of not doing things right. It’s by my colleagues Katheryn Houghton, Rachana Pradhan, who you just heard, and Samantha Liss, and it’s called “Medicaid ‘Unwinding’ Makes Other Public Assistance Harder to Get.” And it’s just an infuriating story pointing out that everything we’ve talked about all year with state reviews of Medicaid eligibility, the endless waits on hold with call centers, lost applications, and other bureaucratic holdups, goes for more than just health insurance. The same overworked and under-resourced people who determine Medicaid eligibility are also the gatekeepers for other programs like food stamps and cash welfare assistance, and people who are eligible for those programs are also getting wrongly denied benefits.
Among the people quoted in the story was DeAnna Marchand of Missoula, Montana, who is trying to recertify herself and her grandson for both Medicaid and SNAP (food stamps), but wasn’t sure what she needed to present to prove that eligibility. So she waited to speak to someone and picking up from the story, “After half an hour, she followed prompts to schedule a callback, but an automated voice announced slots were full and instructed her to wait on hold again. An hour later, the call was dropped.” It’s not really the fault of these workers. They cannot possibly do what needs to be done, and, once again, it’s the patients who are paying the price.
All right, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks this week to Zach Dyer for filling in as our technical guru while Francis [Ying] takes some much-deserved time off. Also, as always, you can email us your questions or comments. We are at whatthehealth@kff.org. Or you can still find me at X, for now, @jrovner, or @julierovner at Bluesky and Threads. Joanne.
Kenen: I’m mostly at Threads, @joannekenen1. Occasionally I’m still on X, but not very often, that’s @JoanneKenen.
Rovner: Sarah.
Karlin-Smith: I am @SarahKarlin, or @sarahkarlin-smith, depending on the platform.
Rovner: Victoria.
Knight: I am @victoriaregisk [on X and Threads]. Still mostly on X, but also on Threads at the same name.
Rovner: We’re all trying to branch out. We will be back in your feed next week. Until then, be healthy.
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Many Autoimmune Disease Patients Struggle With Diagnosis, Costs, Inattentive Care
After years of debilitating bouts of fatigue, Beth VanOrden finally thought she had an answer to her problems in 2016 when she was diagnosed with Hashimoto’s disease, an autoimmune disorder.
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.”
For an illustrated version of this article, click here.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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This story can be republished for free (details).
1 year 4 months ago
Health Care Costs, Health Industry, Insurance, Pharmaceuticals, Alabama, Autoimmune Diseases, Chronic Disease Care, Doctors, Patient Advocacy, texas, Women's Health