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KFF Health News' 'What the Health?': The Struggle Over Who Gets the Last Word
KFF Health News' 'What the Health?'

The Struggle Over Who Gets the Last Word

Episode 332

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.

The Supreme Court in March will hear oral arguments in two very different cases that boil down to the same question: How much power do “experts” in health and science deserve? At stake is the future accessibility of the abortion pill mifepristone, and the ability of government officials to advise social media companies about misinformation.

Meanwhile, abortion opponents are preparing action plans in case Donald Trump retakes the White House. While it’s unlikely Congress will have enough votes to pass a national abortion ban, a president can take steps to make abortion far less available, even in states where it remains legal.

This week’s panelists are Julie Rovner of KFF Health News, Sandhya Raman of CQ Roll Call, Joanne Kenen of Johns Hopkins University and Politico Magazine, and Sarah Karlin-Smith of the Pink Sheet.

Panelists

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico
Sarah Karlin-Smith
Pink Sheet

Among the takeaways from this week’s episode:

  • Abortion opponents are preparing for the possibility of a second Trump presidency. Among ways the former GOP president could influence policy without Congress is by installing an activist secretary of Health and Human Services, possibly allowing a political appointee to overrule decisions made by FDA employees.
  • While President Joe Biden is embracing abortion rights, Donald Trump is highlighting two conflicting truths: that he appointed the Supreme Court justices who helped overturn the constitutional right to an abortion and that embracing abortion restrictions could drive away voters.
  • The federal government is making its initial offers on 10 expensive pharmaceuticals targeted for Medicare price negotiations. But the process is private, so it is unknown what those offers are.
  • Two pharmaceuticals that have been in the headlines — the controversial Alzheimer’s disease drug Aduhelm and the insulin Levemir — will soon be pulled from the market. The decisions to discontinue them play into an ongoing debate in drug development: When is innovation worth the price?
  • “This Week in Health Misinformation” features an article by KFF Health News’ Amy Maxmen about how what once were fringe views questioning science are now becoming more mainstream.

Also this week, Rovner interviews Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” feature, about a husband and wife billed for preventive care that should have been fully covered. If you have an outrageous or confounding 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: ProPublica’s “Amid Recall Crisis, Philips Agrees to Stop Selling Sleep Apnea Machines in the United States,” by Debbie Cenziper, ProPublica, and Michael D. Sallah, Pittsburgh Post-Gazette.

Joanne Kenen: The New York Times’ “Elmo Asked an Innocuous Question,” by Callie Holtermann.

Sarah Karlin-Smith: The Texas Tribune’s “Texas Attorney General Requests Transgender Youths’ Patient Records From Georgia Clinic,” by Madaleine Rubin.

Sandhya Raman: The Associated Press’ “Community Health Centers Serve 1 in 11 Americans. They’re a Safety Net Under Stress,” by Devi Shastri.

Also mentioned on this week’s podcast:

KFF Health News’ ‘What the Health?’
Episode Title: The Struggle Over Who Gets the Last Word
Episode Number: 332
Published: Feb. 1, 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 are taping this week on Thursday, Feb. 1, 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 Joanne Kenen of Johns Hopkins University and Politico Magazine.

Joanne Kenen: Good morning, everybody.

Rovner: Sandhya Raman of CQ Roll Call.

Sandhya Raman: Hello, everyone.

Rovner: And Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Morning.

Rovner: Later in this episode, we’ll have my interview with KFF Health News’ Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month.” This month’s patient — actually, patients — got unexpected bills for care that should have been fully covered.

Before we get to this week’s news, it is February, so that means we want your health policy valentines. We will put a link to submit in our show notes. It’s on our web page at kffhealthnews.org. Show us, and your valentine, your affection for nerdy health policy topics. Winners will get read on the podcast and shared on our webpage and social media. The top poem will get its own illustration by our amazing in-house artist, Oona Tempest, so get those entries in.

OK, now the news. We will start this week in federal court where March is starting to look like “Health Policy Month.” At the 5th Circuit in New Orleans, judges will hear arguments in the case Braidwood v. Becerra, which challenges the very popular provision of the Affordable Care Act that requires insurers to cover a long list of preventive services at no out-of-pocket cost to patients. Fun fact: This is the provision in question in the latest “Bill of the Month,” which you will hear about in a few minutes. Another fun fact: The lower-court decision in this case came from Judge Reed O’Connor, whose name might sound familiar because he was the judge who tried to strike down the entire Affordable Care Act back in 2018. Somebody remind us why the plaintiffs here think the preventive services mandate is unlawful and should be stricken?

Raman: One of the issues that they have in this case is that certain types of this preventative care are in question — so, some of the things related to women’s health, vaccines, PrEP for preventing HIV, and just the moral issues that they have that those things do not necessarily need to be applied to under their plan. It’s some of those things in particular that come up.

Rovner: Yeah. I think in this case it seems to be mostly PrEP. It seems to be mostly about not wanting to encourage homosexual behavior, as the plaintiffs are saying, which is a rerun of what we had with the birth control cases, which went on, also for this provision of the ACA. No matter what happens in this case, Braidwood is sure to be appealed to the Supreme Court, which already has two health-related cases set for March oral arguments.

On March 18, the justices will hear Murthy v. Missouri, which challenges the government’s ability to coordinate with social media companies to downplay medical misinformation. The attorneys general of Louisiana and Missouri are arguing that the Biden administration essentially worked to censor conservative views. The Murthy in this case is Surgeon General Vivek Murthy, on whose behalf the Justice Department called the lower-court ruling seeking to bar communication between the White House and federal health agencies with social media companies, quote, “novel, unbounded, startling, radical, and ill-defined.” This could be a really important case for those trying to rein in medical misinformation, right? I mean, it’s obviously a really delicate thing. What serves as medical misinformation when the government gets to say, “Really, it should be at least de-algorithming,” if that’s a word, “this stuff because it’s not correct.”

Karlin-Smith: Right. I think one of the questions here is was the government collaborating and just sort of discussing and flagging these concerns to the companies, or did they exercise some sort of undue leverage here? Which is a big debate. Obviously, a private company has different ability to also regulate speech on its platform than the government does. So that’s another element to the case. I think sometimes people get confused about what your free speech rights are when you’re not directly dealing with the government in the U.S.

Rovner: Yes, there’s no guaranteed free speech in a private space like social media. I mean, they are not government-run. Although, I guess one of the arguments here is that they may be government-involved. I guess that’s what this case is supposed to try and create the guidelines for, but it’ll be … I’m looking forward to actually listening to these oral arguments.

Well, the following week, on March 26, the Supreme Court will hear the case FDA v. Alliance for Hippocratic Medicine, which is the one where conservative doctors challenged the original year 2000 approval of the abortion pill mifepristone. Technically, the justices are no longer considering canceling the original approval. They’re considering rolling back the FDA’s loosening of restrictions on the drug in 2016. But still, that alone could be a big deal, right? Sandhya, you’ve been following this, have you?

Raman: Yeah. Yeah. The Supreme Court decided at the end of last year that they would be taking up the case. So this week they set the actual oral arguments that we can look forward to. That’s going to be the first big abortion case that they’re going to hear since Dobbs. We have another abortion case coming up in April related to emergency health care. I think that it is interesting that it’s not over the full approval of the drug, it’s the regulations, but if you …

Rovner: Well, that’s because the 5th Circuit rolled back the original decision.

Raman: Yes. But I think that if you look at how much the regulations have changed since the original approval, there’s been a lot of expansion in just how it can be used, who can prescribe it, where it can be used, that kind of thing. So even if they were to rule to rescind some of those regulations and keep the original approval in place, that could have a huge effect in terms of who can get it. I mean, since the initial approval, we’ve been allowed to distribute it by mail, we’ve been allowed to do by telehealth to prescribe it. Just the length into pregnancy that it can be used, there’s been a lot of changes there. So we’ll have that to watch. The briefs have all started coming in, at least in favor of keeping the regulations as they are. We’ve had a huge lawmaker brief from a lot of Democrats. We had one from a lot of the pharmaceutical companies, including some big ones like Pfizer and Biogen.

Rovner: Yeah. I noticed in the PhRMA brief — or the pharmaceutical companies’ brief; I don’t believe it was from PhRMA the organization yet. But they did say that they were worried that if the court even were to uphold the 5th Circuit decision, which doesn’t cancel the approval but would cancel all of the changes since 2016, that that would basically freeze in place the use of drugs as we discover new uses for the same drugs. I mean, if you can’t relabel and put them out in a different way for different things, that would be a big hit to the drug industry, which, Sarah, spends a lot of time repurposing existing drugs, right? That’s a big part of drug development.

Karlin-Smith: Right. Improving upon a drug once it gets approved, expanding the label to treat different conditions is a big thing. The underlying tension for the pharmaceutical industry here is that there is a concern that this is the courts weighing in on sort of questioning the scientific judgment of the FDA in a way that would just make our whole drug approval regulatory system not function well for the industry, regardless of whether you’re talking about an abortion drug or a cancer drug or an arthritis drug. That’s really why there’s so much engagement from folks who are not necessarily here to argue about abortion politics. It’s just this concern that there’s certain scientific expertise and deference that we feel like the FDA should have, and that there’s concern that courts don’t really have that ability to accurately second-guess their judgments there.

Rovner: This really harkens back to what we’ve been talking about for the last couple of weeks with this big Supreme Court case on Chevron deference, which is basically the question of whether judges get to decide how to interpret federal laws or whether courts get to decide. This obviously would be a big deal because judges are not generally people with the expertise that doctors and scientists at the FDA have, right? Isn’t that sort of a big piece of this case too?

Kenen: Yes. We know that this particular court is anti-abortion. If they had just sort of a birthday cake wish, they would make the abortion pill go away. The question is where are they going to come down on who gets to decide? Is this an FDA decision or is this a legal decision elsewhere in the system? That’s the mystery. We really don’t know. In some ways, too, with the prior case we were just talking about, about preventive care, the USP has a lot of … the U.S. Preventive …

Rovner: Services Task Force.

Kenen: Who decides? What’s their authority? Which is part of the underlying legal battle in that case. So, are they anti-abortion? Yeah. Six, we know, are. Are they anti-FDA? Are they going to find some legal rationale for pulling this out of the FDA, with leaving other drugs in the FDA? That’s sort of part of what we’ll be watching for. Not just us. I mean, that’s what it comes down to.

Rovner: I was going to say, even the social media case, I mean, all of these cases are basically about scientific expertise and who gets to have the last say on questions of science and medicine. I mean, literally, all of these cases are about the same thing when you come right down to it.

So while we are on the subject of abortion, former South Carolina governor and, still, Republican presidential candidate Nikki Haley has been dodging questions about a federal abortion ban by pointing out that if neither party has 60 votes in the Senate, nothing can pass. Which is true as long as there’s still a filibuster. Well, it seems that the anti-abortion movement took that as a challenge. Two of our podcast colleagues, Shefali Luthra and Alice [Miranda] Ollstein, have eye-opening stories this week about all the things that President Donald Trump could do, if he’s elected again, without Congress. Some of those are things that he did in his first term that President Biden reversed, but some are new ones too. They’re already vetting people to carry out those policies. It looks like they want to be ready on day one. At least the anti-abortion forces want to be ready on day one, to do kind of a full-court press on anything that they consider to be abortion related.

Raman: Yeah, I think there have been, in the past, some of these policies that have gone back and forth between each administration. So something like Title X, the family planning program. Depending on if we have a Democrat or a Republican in office, they change what some of the regulations are there, but then …

Rovner: They basically kick Planned Parenthood in or out.

Raman: Yeah, things like that. Or like the Mexico City policy, which does something in a similar … but for overseas funding. And we’ve had also a ton of different new regulations since the Dobbs decision, in the Biden administration making it a little easier if you are, in certain cases, needing an abortion and are in the VA, in the Defense Department, things like that, that have been big issues for a lot of Republicans. So they would also have to — it’s more of a new territory to figure out how to roll back some of those compared to some of the things that they have a standard plan on.

But if you look at both of our podcast colleagues’ stories, one that stuck out to me was just kind of how they would have the FTC [Federal Trade Commission] try to crack down on abortion by mail, which comes back to the court case we were just discussing, abortion medication, abortion. And just how you could reinterpret some of the existing regulations that we do have regardless of what happens at the Supreme Court.

Karlin-Smith: I was going to say one thing that really stuck out to me in one of The New York Times pieces about this was how even the Trump administration could basically have their HHS [Department of Health and Human Services] secretary override FDA decisions, because we sort of forget that, actually, the way Congress has written a lot of the laws, actually, the HHS secretary has that ultimate authority around drug approvals. We just sort of take it for granted, I think, that for the most part they delegate that to FDA and the political appointees stay out of it. That’s another thing they raise is you could have sort of a more activist HHS secretary that could interfere with what does or doesn’t get approved by FDA. So there’s some pretty norm-ending ideas there for the government.

Rovner: I will say that I do remember Kathleen Sebelius came in and overrode an FDA … about contraception coverage decision. President [Barack] Obama made it clear that he asked Secretary Sebelius to override the FDA, but I think that was more to protect the FDA. Made it clear that this was a policy decision, not a medical decision. I know that they struggled with that a lot. For exactly the reason that you’re saying, that they didn’t want this to become normal, to have the secretary override the decision of the FDA.

Kenen: But that was a big controversy and someone at the FDA quit over it. I think it was the women’s health person. In that case, it was narrow. It was about, if I’m remembering correctly, Julie has a, sometimes, better memory, it was under-18 access to the morning-after pill, right? It was about 10 or 12 years ago.

Rovner: It was 2011 because it was the night my dog had her leg surgery and I had to come back to the office at 1 in the morning because we didn’t think that the secretary was going to override this decision.

Kenen: No, I said 10 to …

Rovner: I remember it really vividly.

Kenen: … 10 to 12 years ago. Yes, it was, then, 12 years ago. There hasn’t been a high-level repetition of that that I can think — of a HHS override. I mean, that’s one reason why the former FDA commissioners maybe … Julie, you and I were both at Aspen that year. It was maybe eight years ago or nine years ago where all the former FDA commissioners came together and called for the FDA to become an autonomous agency, sort of like the SEC [Securities and Exchange Commission], which was a proposal that then fell in a pond and was never heard from again. But that would prevent that kind of political interference. I mean, I actually spoke to a former FDA commissioner sort of recently and said, “Whatever happened to that?” And he said, “Wait.” So apparently they haven’t totally forgotten. We’re going to see reiterations of this fight over absolutely everything for the indefinite future: Who gets to decide?

Rovner: Yeah, I do think, like I was saying, that this is basically all about who gets to make medical and scientific decisions and whose, quote-unquote, “opinion” holds. Well, before we get off of this totally, both Alice’s and Shefali’s story, and an op-ed by University of California-Davis law professor Mary Ziegler, who’s also been on this podcast, talk about the revival of the Comstock Act. We have talked about this before and we surely will again, but somebody remind us what this 1873 law does and how it could be applied to abortion.

Karlin-Smith: In simple terms, it’s to prevent sending what are considered, quote-unquote, “obscene materials” through the mail. What that can refer to has been interpreted in different ways over the years. I mean, some of the … when it’s from the 1800s, it’s before we had medication abortion. It’s before we had the internet and telemedicine and all of these things. So there’s a lot of room that people have seen for just how it can be reinterpreted now with a lot of different things in place compared to over a 100-and-some years ago, and just how that can work in certain favors.

Rovner: I think I’ve said this before, now that we’re talking about the Comstock Act again, I realize that Anthony Comstock, who it is named after, was not a member of Congress. He was just an anti-smut crusader, basically. I believe the phrase, “You can’t send anything lewd or obscene through the mail.” This would be how they could sort of use it to say that anything abortion or possibly even contraception could be lewd or obscene. With all of this, that the Republicans are getting ready, or at least the anti-abortion groups are getting ready to do, Sandhya, you have a story out this week pointing out that abortion is not something Republicans are emphasizing on the campaign trail. Why not? There seems to be an awful lot of enthusiasm on that side.

Raman: It is pretty interesting. I mean, even if at this point it’s looking like we’re going to have the Round Two of the Trump-Biden matchup, if you look at how Trump, and then even Nikki Haley, have been messaging, all their ads, all that, they have not been as strong on anti-abortion issues as they have in the past. They’re both people that — both of them I’ve covered addressing annual Susan B. Anthony List events. I’ve covered March for Life where Trump has addressed them. They’ve both been very strong on this issue. And then, as you look at it now, neither of them have been really strong on committing to signing a national ban. Haley has really sidestepped the issue in a lot of the interviews that she’s done, just because, like you said, the Senate filibuster. I think even Trump has … they’ve been messaging on him being the most pro-life president that they’ve had. He’s just kind of sidestepped it as well, just kind of emphasizing other things. If you look at the advertising they’ve been doing, it’s not focused on this. It’s such a stark contrast to what the Biden campaign has done, which has really gone all in on abortion rights. They even had an all-reproductive-rights-themed rally a couple weeks ago.

Kenen: When Trump did the town hall on Fox, two, three weeks ago, whenever that was, he had it both ways, which meant that there’s a film clip to use whoever you’re advertising to. Within a minute and a half or two minutes or whatever it was, Trump took credit for knocking down Roe. He took credit for … “I accomplished that.” In other words, he appointed the justices or some of the justices that voted for that. So he took credit for finally being the one to get rid of abortion after 50 … get rid of Roe after 50 years. He was very …

Rovner: Which is true.

Kenen: It’s true. Well, both things he said were true because he took credit for that. So there’s your film clip one for that ad, or that message, or that social media, or whatever, direct mail. Whatever you want to use it for. It’s “I am the one.” And it’s true. And then, in the next breath, he said, “But we have to win elections.” He’s also said he’s for a … is it rape and incest or just rape? I think it was both. He’s for that exception. And then he talked about, “Face reality, we have to win.” Which is also a true statement if you’re running for president. You have to win or you don’t get to do these things that you’ve promised. So, I mean, he’s not the first politician or the last to try to have it both ways. It was interesting that he had it both ways, both accurately, in a two-minute conversation.

Rovner: Not that uncommon for him, though …

Kenen: No, but …

Rovner: To take both sides of an issue at the same time.

Kenen: He was so unabashed about it, it was sort of interesting that, “I did this, but maybe I won too much. Maybe it wasn’t …” I mean, at the polls, abortion has won.

Rovner: Yeah.

Kenen: Anytime there’s been a single-issue vote on abortion, the pro-choice people have won every ballot initiative since Dobbs.

Rovner: Yeah. And yet the other ironic thing, I mean, Sandhya, you already mentioned this, that the Biden administration is going all in on abortion because they know that Democratic women and independent women in most polls are supportive of abortion rights and not supportive of the Dobbs decision. On the other hand, Biden himself is an unlikely messenger for this. He’s a Catholic man of a certain age. He’s always been uncomfortable with this issue. He was pro-life early in his career. There was a joke that he didn’t even say “abortion,” I think, until a year into his presidency. There was an actual website that said, “Has Joe Biden said the word abortion yet?” So is he going to be able to bring along all of these people because they’re just going to, “If you support abortion rights, you’ll just vote for anybody not named Donald Trump”?

Raman: I mean, I think that we’ve already seen some of these different abortion-oriented groups really mobilize or kind of illustrate, commit how much money they’re going to spend, all the on-the-ground stuff they’re going to do to get him reelected. They have called out some of the things that he’s done, some of the regulations we’ve already talked about, that kind of thing. But I do get the sense that some of them are frustrated that we haven’t done enough. But I mean you could say the same for the other side. There’s always more that people want. Given the limitations of government when you don’t have the trifecta, and even when you do have the trifecta, if you don’t have enough of a majority to get some of your golden-ticket items done. So I think that it will be interesting to watch. I mean, we even, going forward, for the State of the Union coming up, they’ve already announced that they’re going to have … one of the guests is Kate Cox, the Texas woman who had to travel when she wasn’t able to get the court order to get the emergency abortion.

Rovner: Yeah.

Kenen: I mean, it’s a turnout issue. We know that voters are not enthusiastic about either candidate. We know that, right? I mean, will that change as the election gets closer? Who knows? But right now, many polls are finding that America’s not crazy about this particular rematch. So what are the issues that motivate people who are lukewarm to actually vote? This is going to be on both sides. This is going to be an issue, but the intensity in many ways is going to be on the Democratic side because they’re, just like it used to be, the one fighting for change. The one on the out is the one more likely to have that voter intensity. For 50 years, it was the Republicans. For the last 18 months, it’s been the Democrats. Vice President [Kamala] Harris has been talking about this. A lot of the other surrogates are talking about this. So this is a “Will this make you get out of whatever else you were going to do that Tuesday, or early vote, and actually vote?” It’s going to be one of the key issues in turnout.

Karlin-Smith: I think that’s a great point, that that is another reason why there’s so much Republican messaging on some of these other issues, on immigration, on crime and things like that. Because when it’s not a single-issue thing like the ballot — they’re still winning tons of races for governor and things like that. Maybe focusing on those issues might be good for them to boost some of the turnout.

Rovner: Well, another big issue that voters care about is drug prices. We actually have a lot of drug news this week. The federal government, just this morning, sent out its first set of proposed prices for the 10 drugs they have selected for Medicare price negotiation. Of course, they’re not telling us those prices because this is a private negotiation. But Sarah, did anything jump out at you from what they’ve said about kicking off this process?

Karlin-Smith: I think right now what the Biden administration is trying to do is just sort of publicize that this process is happening. Because again, this is a big political issue, an election thing that they’re hoping will motivate voters. But at the same time, it’s a little bit of a dud in some ways because the government can’t say what they’re offering and the companies don’t necessarily seem inclined to put out any information on this yet. So it’s going to be a pretty private process, potentially all the way up until this fall, in September, when we’ll get some public information. But I think the Biden administration just wants to keep ramming it into voters’ heads that, “Hey, we’re doing work to try and lower drug prices for people as much as we can.”

Rovner: Of course, the drug industry still hopes that some court will overrule and stop this whole thing, right?

Karlin-Smith: Right. There was actually oral arguments yesterday in one of the challenges from AstraZeneca to … that they’re hoping courts will intervene. I think some of the initial reporting from that was that the judge was fairly skeptical of some of AstraZeneca’s arguments, such as that there’s sort of a due process or taking of property that the government is not allowed to do here. The judge was basically saying, “Well, nobody is forcing you to participate in the Medicare program and sell your drugs there.” So some initial, at least, positive signs for the government in those oral arguments.

Rovner: Yeah. Although, as we know, they have a long way to go. In the individual-drug news category, remember when we were talking all about the controversial Alzheimer’s drug, Aduhelm, pretty much every week? Well, it is back and it’s sort of gone, or going, at least. Drug company Biogen is giving up ownership and prematurely ending a trial that was supposed to confirm the drug’s effectiveness in treating early Alzheimer’s. Sarah, you followed this from the very beginning. What do you take away from this whole saga? I mean, at one point, Aduhelm was going to be the answer, and then it was going to break Medicare because it costs so much. And then it was going to make people sick because it had side effects. And now it’s just going away.

Karlin-Smith: There’s so many layers to this story, but the quick version of it is, basically, FDA sort of controversially approved this drug over a lot of skepticism of whether it was actually going to be beneficial to patients. They use sort of a controversial measure that the drug reduced these amyloid plaques in the brain, but there were a lot of questions, including by outside scientists and so forth, as to whether this would actually improve the lives of patients with Alzheimer’s in terms of helping them function and memory. There’s a lot of side effects to the drug. Of course, the third layer of this is it was priced quite costly. What ended up happening was Medicare said, “We will only cover this drug at this point in time if it’s used in a clinical trial.” Part of what happened, I think in large part because of that, is there was no uptake of this product, no sales. That’s really why Biogen has pulled the plug here. The other element of this is that Biogen also has another Alzheimer’s drug that was approved fairly shortly thereafter that actually has better data to show there’s some benefit in actually improving people’s cognition. So again, they’re not necessarily invested in pushing forward a drug where they face all these payment challenges and have less solid data. The question now becomes, what does FDA do here? Do they officially go through the process and make sure … force Biogen to pull it off the market? What do they do about this clinical trial that they were supposed to be conducting to confirm the benefit? And what does science lose if that just gets stopped? I’m not sure if anyone will feel like there’s a need to complete that at this point. But it does raise interesting questions to me because I think about 1,500 or something patients were actually already enrolled in participating in that study.

Rovner: But I do think it’s important to emphasize that since Aduhelm was sort of all the rage, the big debate, we actually are finally seeing some drugs that do appear to have more benefit than cost for early Alzheimer’s. I mean, not a cure, but at least a slowing of the deterioration, right?

Karlin-Smith: I guess I think people are sort of cautiously optimistic about these drugs. They’re excited. Nobody thinks these are the holy grail yet of Alzheimer’s treatments. I think even some of the CEOs of the companies working on them have acknowledged that, but they do seem to offer some benefit. Again, there’s still a lot of these brain-swelling safety events that can be fairly devastating. So I think people are going to be watching really closely. Because usually what we know when a drug is initially approved is a fraction of what we end up knowing over time. So I think it’s still early days, but there is some hope that we finally sort of maybe cracked the code on some of the mechanisms of action of how to treat Alzheimer’s.

Kenen: Like with other drugs in cancer, elsewhere, sometimes you just need the first-draft drug. Hopefully, this isn’t the best we’re going to get. These new drugs that are showing some promise and some slowing down is sort of a proof of concept. Yes, you can make a drug that works. In other fields, too, you ended up … the first drug wasn’t a great drug, but it was a leap ahead in terms of understanding the science. So the fact that we have anything that does anything, scientists do consider that they don’t really understand Alzheimer’s, but it matters that there’s some effect. It’s not next week or next year, but there’s a goal that you can see. I think if you’re an Alzheimer’s researcher who’s spent their life not seeing a lot of tangible results, this is like a glimmer. Maybe more than a glimmer. I mean, this is like, “OK, we’re learning how to do this.”

Karlin-Smith: That was actually one of Biogen’s arguments, I think, for why Aduhelm should have been approved in the first place. Maybe even some folks at the FDA basically saying, “Look, we know this maybe isn’t the home run, but if you don’t approve these products, people are just going to leave this space and not invest in it and not keep trying to bring forth drugs.” I mean, there are people that vehemently disagree with that argument, that that’s the best way to encourage the right innovation for this country, but that wasn’t an argument you saw from industry and even some at the FDA, I think.

Kenen: But I wasn’t talking about Aduhelm specifically. I mean, the other ones that are in the pipeline that are coming out. I mean, it’s new and we don’t really know much about them yet. But the past Alzheimer’s drugs were basically useless or really limited use. These might be what we will later look back on as the first draft as opposed to another failure.

Rovner: I want to move on to another drug that’s being discontinued. European mega drugmaker Novo Nordisk has announced its ending production of a long-acting insulin, Levemir — I think that’s how you pronounce it — that, coincidentally, is one of the insulins that it slashed prices on last year under pressure from lawmakers. The announcement came the same week the company announced it would double the availability in the U.S. of its blockbuster weight loss drug, Wegovy, and the same week that the company hit $500 billion in market value. While there are substitutes for the insulin, for Levemir, many of its patients say this particular product is the best one for them, and there isn’t a one-to-one substitute. I guess this is a reminder that for drug companies, the prime goal is turning profits for their shareholders. I mean, they’re making a lot more money off of these weight loss drugs than they are off their diabetes drugs. We know that the weight loss drugs were in shortage because they couldn’t make enough of them. So you don’t have to be really good at math to kind of put two and two together here, right?

Raman: Right. I’m not sure they’re necessarily even hiding that fact, to some degree. They basically lowered the prices of a lot of these insulin products because of changes in the Medicaid rebate program, where because these products had their prices raised so much over the years, they were going to be subject to new inflation penalties, where they’d essentially owe Medicaid money if they didn’t lower the price. So now you have these older insulin products with lower prices that don’t make them as much money. And Novo Nordisk, in the insulin space, has innovated over the years and made some improvements. So they want to focus on selling their insulin products that they can sell at a higher price point. But again, you get patients who say, “Look, this older drug, actually, I personally, think works better.” And there’s a benefit to patients that it’s cheaper. This is, I think, an old story in the pharmaceutical space that sometimes is looked upon by lawmakers, which is, they innovate and they push patients onto newer products, but is the innovation really worth the price or should people have some way to choose the older product for the lower price if they think it works fine for them?

Rovner: Speaking of drug company profits, the CEOs of Merck and Johnson & Johnson have voluntarily agreed to testify before the Senate HELP Committee — meaning that Chairman Bernie Sanders won’t have to subpoena them after all. The hearing is scheduled for Feb. 8. But it’s not about any specific legislation, this is just a chance for Sanders to lecture the CEOs about their high prices, Sandhya?

Raman: Essentially, yes. I think, also, it’s been such a big issue for him. Even if you look back when we had the various nominees, that they wanted to … that would go through his committee where he said that he really wanted more action on this. So I think it’ll be interesting what he brings up, and if there’s a clear pathway of something to move forward since this has been such a big issue for him for a while.

Rovner: Well, he successfully made me want to watch this hearing. We’ll see how it goes. All right. Well, let us turn to “This Week in Health Misinformation.” In addition to that case that the Supreme Court will hear, that we talked about at the top, we have a story from my new KFF Health News colleague, Amy Maxmen, about how what used to be fringe anti-science views are now mainstream among Republicans in general. Vaccine hesitancy has gone up. And that’s hesitancy even to long-proven childhood vaccines, not just the covid vaccine. While trust in science in general has dropped, according to numerous polls. In Florida, Gov. Ron DeSantis has made public health conspiracies part of his platform. And as a presidential candidate, he said he would’ve considered nominating noted conspiracy theoretician and anti-vaxxer Robert F. Kennedy Jr. to run the CDC [Centers for Disease Control and Prevention]. I’ve certainly seen more pushback in my reporting of things that people used to agree on. I assume you guys have too. I mean, it harkens right back to our original theme of who gets trusted when they talk about science and medicine.

Karlin-Smith: I think one of the interesting things that Amy’s story really points out very well, that people have been talking about a lot since the beginning of the covid era, is that this anti-science or anti-vaccine attitude has really become embedded in people’s personal identity and personal politics in a new way. Once it becomes part of your political identity, the experts are saying, it becomes much harder to change people’s views. That’s seen as one of the key problems right now, because, again, providing facts or just rebutting the information doesn’t seem to work when you’re basically sort of attacking somebody’s core identities and beliefs.

Rovner: Yeah, it’s an interesting subject, how we’re sort of freezing a lot of these things in place.

Kenen: Well, it’s also tied up with liberty and freedom in a way that has been part of the anti-vax movement for a long time, but it was a much smaller thread. Right now, this individual liberty or medical freedom, “You don’t have the right to mandate anything,” that “It’s my body.” Now, that’s fine if it’s really only your body, but when you’re talking about infectious diseases, it’s everybody’s bodies. Anti-vaxxing is across the … there are people on both the left and right who are against vaccination. That has changed in the intensity and the politicization on the right, during covid and since covid, and this medical freedom movement, which is sort of a subsection of libertarianism. We tend to talk about anti-vaxxers and anti-vaccination because that’s the most salient thing in the last few years, but there is a broader distrust of expertise, period. Scientific expertise, medical expertise, everything. I mean, some of you know I’m writing a book. We turned in the first draft this very morning. Misinformation is part of the book, and disinformation. This decline, when I was researching … it wasn’t that America was a really trusting society. I was surprised. Going back in history, we’ve always [had] pretty high distrust rates of many major institutions, but it’s much higher in health, medicine, science, public health right now.

Rovner: It’s not just the U.S. We’re seeing this around the world, basically, since the pandemic.

Kenen: It’s tied into the pandemic. It’s tied into the research of populism, a right-wing form of populism. It’s tied into a whole anxiety. The last few years have been really hard on people. Science didn’t have the answers and quick fixes that people wanted, because science is incremental, and people wanted instantaneous fixes. They didn’t understand the incremental changing nature of science, and scientists didn’t always explain it well enough. So it’s here to stay for the near future. It’s pretty insidious because it’s way beyond vaccines.

Rovner: I’m sure we will talk about it more. Well, that is this week’s news. Now we will play my “Bill of the Month” interview with Samantha Liss, and then we will come back with our extra credits.

I am pleased to welcome to the podcast my colleague Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Thanks for joining us, Sam.

Samantha Liss: Hi.

Rovner: So, this month’s patients, a husband and wife, got some mysterious bills for preventive care that they thought should have been free. Tell us who they are and what they got.

Liss: Yeah. So this month we bring you Chantal Panozzo and her husband. They live outside Chicago. And they underwent their first colonoscopies last year, after turning 45.

Rovner: Then, as we say, the bill came. Now, colonoscopies are very much on the list of preventive services that are supposed to be available at no out-of-pocket cost to patients. So there really shouldn’t even have been a bill. How much was the bill and what was it for?

Liss: Yeah. So their insurance company paid for the screening, but there was a separate $600 charge for something called “surgical trays.” Supplies you’d expect to be covered.

Rovner: Yeah. It’s like saying, “We’re going to charge you rent for lying on our table.”

Liss: Exactly.

Rovner: Chantal Panozzo knew that there shouldn’t be a charge. After getting no good explanation from her insurer or the gastroenterology practice, she went to complain. She went pretty much everywhere she could, right?

Liss: Yeah. Chantal is a savvy consumer, and she was furious. She lodged an appeal with her insurer, she filed a formal complaint with state regulators in Illinois, and she wrote to her elected officials.

Rovner: So what eventually happened?

Liss: She won, but she’ll tell you she did not feel victorious. Her insurer waived the bills for her and her husband, and they didn’t owe anything, but it was a months-long slog. I think seven months in total.

Rovner: Just to be clear, it was actually the insurer that she appealed to, and she won that appeal.

Liss: Yeah. I think part of what helped push that appeal along was her complaint to the Illinois Department of Insurance.

Rovner: So, doing all of those things apparently helped. It turns out that the couple uncovered quite the loophole in the preventive services mandate. What is that and how can others avoid falling into the same trap?

Liss: Yeah. Under the law, the insurer bears the legal burden to pay for preventative care. There’s no requirement on providers to bill a certain way. So I think as we tell all our folks who read and listen to our “Bill of the Month” series, never pay the first bill. Wait until you get your explanation of benefits, and if something doesn’t feel right, ask questions.

Rovner: So basically, people can go in and get care that they expect and should be free and get random charges, and they can complain about those, right?

Liss: Exactly. And I think Chantal’s example shows sometimes you have to fight so hard and for so long to get something waived that you shouldn’t have been charged for to begin with. It’s maddening and it ticks people off.

Rovner: And if all else fails, you can send your bill to us.

Liss: Yes, please do.

Rovner: Sam Liss, thank you very much.

Liss: Thanks.

Rovner: OK, we’re 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 have my favorite this week, why don’t you go first?

Kenen: I told Julie that Elmo didn’t want her to get sad if I was going to do this one, and she didn’t. I’m sure almost everybody saw the Elmo phenomenon this week. The particular story that I’m referring to is by Callie Holtermann in The New York Times, “Elmo Asked an Innocuous Question.” And then there’s this wonderful sub-headline, “Elmo was not expecting it to open a yawning chasm of despair.” Elmo tweeted or X’ed, whatever you call it … I mean, it wasn’t really Elmo, it was his human. Elmo is just checking in, “How is everybody doing?” There were tens of thousands of views. Last time I looked, there were more than 16,000 responses. I did not read all 16,000, but people really are not happy. And they told Elmo that. It just became this sort of mass confessional to Elmo of all the things that people were feeling despair about. And then Elmo ended up saying something like, “Wow, Elmo is glad he asked.” So I don’t know if Elmo has now become our national shrink, but to a certain extent this week, he was.

Rovner: Absolutely. Sarah?

Karlin-Smith: I looked at a piece from The Texas Tribune about not quite an amazing topic, maybe. The “Texas Attorney General Requests Transgender Youths’ Patient Records From Georgia Clinic,” by Madaleine Rubin. It basically looks at a trend where Texas seems to be trying to not only control what is happening to the care of transgender children within their state, but trying to maybe intimidate or prevent care from happening out of state by going after telehealth providers, but maybe even trying to request records related to people that have traveled outside of the state to get care because they can’t get it in the state. It reminds me a bit of some of what some of these states are also trying to do in the abortion space as well, but raises interesting questions about whether the state really has the authority to interfere here and so forth.

Rovner: Yeah, Texas is obviously fighting this border issue, too, with the federal government. So Texas is trying to basically see how far it can press its authority, in general. Sandhya?

Raman: My pick this week is called “Community Health Centers Serve 1 in 11 Americans. They’re a Safety Net Under Stress.” It’s from Devi Shastri at The AP. I just thought it was a great look at some of the challenges, some new, some evergreen for the 1,400 federal community health centers that provide medical care, social services, and so much for so many folks in the country. It just looks at some of the issues. In Congress, there’s always the periodic federal funding drama of just, “When will community health centers get funded?” And, “They can’t long-term plan on that.” That and just how the staffing concerns, whether it’s money or quality of life, or just how they can address new health equities and things like that.

Rovner: It was a really good story. My extra credit this week is from ProPublica. It’s a coda to a series of stories that they’ve been working on, and we’ve been talking about over the past several years, after reporters at our fellow nonprofit newsroom helped uncover serious defects in the CPAP breathing machines manufactured by Philips Respironics, and the company’s failure to report complaints about the foam in those machines crumbling and getting into patient’s lungs. The company finally issued a recall. Then, apparently, the replacement foam also started to deteriorate, which also became a subject of the series. Now the GAO is investigating the FDA’s oversight of medical devices, and a federal criminal probe is being sought for Philips. And now, at least, the company will stop selling the machines in the United States. So journalism works, particularly when reporters keep at it. And boy, did they keep at it on this story.

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 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 hanging out these days?

Kenen: I’m mostly on Threads @joannekenen1.

Rovner: Sarah?

Karlin-Smith: I am @SarahKarlin or @sarahkarlin-smith.

Rovner: Sandhya?

Raman: I’m still with X and on Bluesky, @Sandhya@Writes.

Rovner: We will be back in your feed next week. Until then, be healthy.

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