PBMs, the middlemen of drug pricing negotiations, also claim portions of those lucrative rebates for themselves. So when new market developments threaten to diminish or wipe away that revenue stream, PBMs find crafty ways to keep as much of those dollars as possible — often at the expense of employers.

One such case occurred last year, when a wave of Humira biosimilars entered the market and drug companies slashed the list prices of their insulin products. CVS Caremark, the PBM owned by CVS Health that oversees the prescription drug benefits of 103 million people, told its employer clients that it anticipated “more lower-cost products (including specialty biosimilars) may become preferred products” on its lists of approved drugs for 2024, according to documents obtained by STAT.

Continue to STAT+ to read the full story…

The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

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

The general election campaign for president is (unofficially) on, as President Joe Biden and former President Donald Trump have each apparently secured enough delegates to become his respective party’s nominee. And health care is turning out to be an unexpectedly front-and-center campaign issue, as Trump in recent weeks has suggested he may be interested in cutting Medicare and taking another swing at repealing and replacing the Affordable Care Act.

Meanwhile, the February cyberattack of Change Healthcare, a subsidiary of insurance giant UnitedHealth Group, continues to roil the health industry, as thousands of hospitals, doctors, nursing homes, and other providers are unable to process claims and get paid.

This week’s panelists are Julie Rovner of KFF Health News, Anna Edney of Bloomberg News, Joanne Kenen of Johns Hopkins University and Politico Magazine, and Margot Sanger-Katz of The New York Times.

Panelists

Anna Edney
Bloomberg

@annaedney

Read Anna's stories.

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's articles.

Margot Sanger-Katz
The New York Times

@sangerkatz

Read Margot's stories.

Among the takeaways from this week’s episode:

• It is unclear exactly what Trump meant in his recent remarks about possible cuts to Medicare and Social Security, though his comments provided an opening for Biden to pounce. By running as the candidate who would protect entitlements, Biden could position himself well, particularly with older voters, as the general election begins.
• Health care is shaping up to be the sleeper issue in this election, with high stakes for coverage. The Biden administration’s expanded subsidies for ACA plans are scheduled to expire at the end of next year, and the president’s latest budget request highlights his interest in expanding coverage, especially for postpartum women and for children. Plus, Republicans are eyeing what changes they could make should Trump reclaim the presidency.
• Meanwhile, Republicans are grappling with an internal party divide over access to in vitro fertilization, and Trump’s mixed messaging on abortion may not be helping him with his base. Could a running mate with more moderate perspectives help soften his image with voters who oppose abortion bans?
• A federal appeals court ruled that a Texas law requiring teenagers to obtain parental consent for birth control outweighs federal rules allowing teens to access prescription contraceptives confidentially. But concerns that if the U.S. Supreme Court heard the case a conservative-majority ruling would broaden the law’s impact to other states may dampen the chances of further appeals, leaving the law in effect. Also, the federal courts are making it harder to file cases in jurisdictions with friendly judges, a tactic known as judge-shopping, which conservative groups have used recently in reproductive health challenges.
• And weeks later, the Change Healthcare hack continues to cause widespread issues with medical billing. Some small providers fear continued payment delays could force them to close, and it is possible that the hack’s repercussions could soon block some patients from accessing care at all.

Also this week, Rovner interviews Kelly Henning of Bloomberg Philanthropies about a new, four-part documentary series on the history of public health, “The Invisible Shield.”

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 “Navy Demoted Ronny Jackson After Probe Into White House Behavior,” by Dan Diamond and Alex Horton.

Joanne Kenen: The Atlantic’s “Frigid Offices Might Be Killing Women’s Productivity,” by Olga Khazan.

Margot Sanger-Katz: Stat’s “Rigid Rules at Methadone Clinics Are Jeopardizing Patients’ Path to Recover From Opioid Addiction,” by Lev Facher.

Anna Edney: Scientific American’s “How Hospitals Are Going Green Under Biden’s Climate Legislation,” by Ariel Wittenberg and E&E News.

Also mentioned on this week’s podcast:

• KFF Health News’ “Energy-Hog Hospitals: When They Start Thinking Green, They See Green,” by Julie Appleby.
• Stat’s “The War on Recovery: How the U.S. Is Sabotaging Its Best Tools to Prevent Deaths in the Opioid Epidemic,” by Lev Facher.

Click to open the transcript

Transcript: Maybe It’s a Health Care Election After All

[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, March 14, at 10 a.m. Happy Pi Day, everyone. 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 Margot Sanger-Katz of The New York Times.

Margot Sanger-Katz: Good morning, everybody.

Rovner: Anna Edney of Bloomberg News.

Anna Edney: Hi there.

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

Joanne Kenen: Hey, everyone.

Rovner: Later in this episode we’ll have my interview with Dr. Kelly Henning, head of the public health program at Bloomberg Philanthropies. She’ll give us a preview of the new four-part documentary series on the history of public health called “The Invisible Shield;” It premieres on PBS March 26. But first this week’s news. We’re going to start here in Washington with the annual State of the Union / budget dance, which this year coincides with the formal launch of the general election campaign, with both President Biden and former President Donald Trump having clinched their respective nominations this week.

Despite earlier claims that this year’s campaign would mostly ignore health issues, that’s turning out not so much to be the case. Biden in his speech highlighted reproductive health, which we’ll talk about in a minute, as well as prescription drug prices and the Affordable Care Act expansions. His proposed budget released on Monday includes suggestions of how to operationalize some of those proposals, including expanding Medicare’s drug negotiating powers. Did anything in particular in the speech or the budget jump out at any of you? Anything we weren’t expecting.

Edney: I wouldn’t say there was anything that I wasn’t expecting. There were things that I was told I should not expect and that I feel like I’ve been proven right, and so I’m happy about that, and that was the Medicare drug price negotiation. I thought that that was a win that he was going to take a lap on during the State of the Union, and certainly he did. And he’s also talking about trying to expand it, although that seems to face an extremely uphill battle, but it’s a good talking point.

Rovner: Well, and of course the expanded subsidies from the ACA expire at the end of next year. I imagine there’s going to be enough of a fight just to keep those going, right?

Edney: Yeah, certainly. I think people really appreciate the subsidies. If those were to go away, then the uninsured rate could go up. It’s probably an odd place in a way for Republicans, too, who are talking about, again, still in some circles, in some ways, getting rid of Obamacare. We’re back at that place even though I don’t think anyone thinks that’s entirely realistic.

Rovner: Oh, you are anticipating my next question, which is that former President Trump, who is known for being all over the place on a lot of issues, has been pretty steadfast all along about protecting Medicare and Social Security, but he’s now backing away from even that. In an interview on CNBC this week, Trump said, and I’m quoting, “There is a lot you can do in terms of entitlements in terms of cutting” — which his staff said was referring to waste and fraud, but which appears to open that up as a general election campaign issue. Yes, the Biden people seem to be already jumping on it.

Sanger-Katz: Yes. They could not be more excited about this. I think this has been an issue that Biden has really wanted to run on as the protector of these programs for the elderly. He had this confrontation with Congress in the State of the Union last year, as you may remember, in which he tried to get them to promise not to touch these programs. And I think his goal of weaponizing this issue has been very much hindered by Trump’s reluctance to take it on. I think there are Republicans, certainly in Congress, and I think that we saw during the presidential primary some other candidates for president who were more interested in rethinking these programs and concerned about the long-term trajectory of the federal deficit. Trump has historically not been one of them. What Trump meant exactly, I think, is sort of TBD, but I think it does provide this opening. I’m sure that we’ll see Biden talking about this a lot more as the campaign wears on and it wouldn’t surprise me at all to see this clip in television ads and featured again and again.

Kenen: So it’s both, I mean, it’s basically, he’s talked about reopening the repeal fight as Julie just mentioned, which did not go too well for the Republicans last time, and there’s plenty to cut in Medicare. If you read the whole quote, he does then talk about fraud and abuse and mismanagement, but the soundbite is the soundbite. Those are the words that came out of his mouth, whether he meant it that way or not, and we will see that campaign ad a lot, some version of it.

Rovner: My theory is that he was, and this is something that Trump does, he was on CNBC, he knew he was talking to a business audience, and he liked to say what he thinks the audience wants to hear without — you would think by now he would know that speaking to one audience doesn’t mean that you’re only speaking to that one audience. I think that’s why he’s all over the place on a lot of issues because he tends to tailor his remarks to what he thinks the people he is speaking directly to want to hear. But meanwhile, Anna, as you mentioned, he’s also raised the specter of the Affordable Care Act repeal again.

Sanger-Katz: I do think the juxtaposition of the Biden budget and State of the Union and these remarks from Trump, who now is officially the presumptive nominee for president, I think it really does highlight that there are pretty high stakes in health care for this election. I think it’s not been a focus of our discussion of this election so far. But Julie, you’ve mentioned the expiration of these subsidies that have made Affordable Care Act plans substantially more affordable for Americans and substantially more appealing, nearly doubling the number of people who are enrolled in these plans.

That is a policy that is going to expire at the end of next year. And so you could imagine a scenario, even if Trump did not want to repeal the Affordable Care Act, which he does occasionally continue to make noises about, where that could just go away through pure inertia if you didn’t have an administration that was actively trying to extend that policy and you could see a real retrenchment: increases in prices, people leaving the market, potentially some instability in the marketplace itself, where you might see insurers exiting or other kinds of problems and a situation much more akin to what we saw in the Trump administration where those markets were “OK, but were a little bit rocky and not that popular.”

I think similarly for Medicare and Medicaid, these big federal health programs, Biden has really been committed to, as he says, not cutting them. The Medicare price negotiation for drugs has provided a little bit more savings for the program. So it’s on a little bit of a better fiscal trajectory, and he has these additional proposals, again, I think long shots politically to try to shore up Medicare’s finances more. So you see this commitment to these programs and certainly this commitment to — there were multiple things in the budget to try to liberalize and expand Medicaid coverage to make postpartum coverage for women after they give birth, permanently one year after birth, people would have coverage.

Right now, that’s an option for states, but it’s not required for every state. And additionally to try to, in an optional basis, make it a little easier to keep kids enrolled in Medicaid for longer, to just allow states to keep kids in for the first six years of life and then three years at a time after that. So again, that’s an option, but I think you see the Biden administration making a commitment to expand and shore up these programs, and I do think a Trump administration and a Republican Congress might be coming at these programs with a bit more of a scalpel.

Rovner: And also, I mean, one of the things we haven’t talked about very much since we’re on the subject of the campaign is that this year Trump is ready in a way that he was not, certainly not in 2016 and not even in 2020. He’s got the Heritage Foundation behind him with this whole 2025 blueprint, people with actual expertise in knowing what to turn, what to do, actually, how to manipulate the bureaucracy in a way that the first Trump administration didn’t have to. So I think we could see, in fact, a lot more on health care that Republicans writ large would like to do if Trump is reelected. Joanne, you wanted to add something.

Kenen: Yeah, I mean, we all didn’t see this year as a health care election, and I still think that larger existential issues about democracy, it’s a reprise. It’s 2020 all over again in many ways, but abortion yes, abortion is a health care issue, and that was still going …

Rovner: We’re getting to that next.

Kenen: I know, but I mean we all knew that was still going to be a ballot driver, a voter driver. But Trump, with two remarks, however, well, there’s a difference between the people at the Heritage Foundation writing detailed policy plans about how they’re going to dismantle the CDC [Centers for Disease Control and Prevention] as we currently know it versus what Trump says off the cuff. I mean, if you say to a normal person on the street, we want to divide the CDC in two, that’s not going to trigger anything for a voter. But when you start talking about we want to take away your health care subsidies and cut Medicare, so these are sort of, some observers have called them unforced errors, but basically right now, yeah, we’re in another health care election. Not the top issue — and also depending on what else goes on in the world, because it’s a pretty shaky place at the moment. By September, will it be a top three issue? None of us know, but right now it’s more of a health care election than it was shaping up to be even just a few weeks ago.

Rovner: Yeah. Well, one thing, as you said, that we all know will be a big campaign issue this fall is abortion. We saw that in the State of the Union with the gallery full of women who’d been denied abortion, IVF services, and other forms of reproductive health care and the dozens of Democratic women on the floor of the House wearing white from head to toe as a statement of support for reproductive health care. While Democrats do have some divides over how strongly to embrace abortion rights, a big one is whether restoring Roe [v. Wade] is enough or they need to go even further in assuring access to basically all manner of reproductive health care.

It’s actually the Republicans who are most on the defensive, particularly over IVF and other state efforts that would restrict birth control by declaring personhood from the moment of fertilization. Along those lines, one of the more interesting stories I saw this week suggested that Donald Trump, who has fretted aloud about how unpopular the anti-abortion position is among the public, seems less likely to choose a strong pro-lifer as his running mate this time. Remember Mike Pence came along with that big anti-abortion background. What would this mean? It’s not like he’s going to choose Susan Collins or Lisa Murkowski or some Republican that we know actually supports abortion rights. I’m not sure I see what this could do for him and who might fit this category.

Kenen: Well, I think there’s a good chance he’ll choose a woman, and we all have names at the tip of our tongues, but we don’t know yet. But yeah, I mean they need to soften some of this stuff. But Trump’s own attempt right now bragging about appointing the justices that killed Roe, at the same time, he’s apparently talking about a 15-week ban or a 16-week ban, which is very different than zero. So he’s giving a mixed message. That’s not what his base wants to hear from him, obviously. I mean, Julie, you’ll probably get to this, but the IVF thing is also pitting anti-abortion Republican against anti-abortion Republican, with Mike Pence, again, being a very good example where Mike Pence’s anti-abortion bona fides are pretty clear, but he has been public about his kids are IVF babies? I’m not sure if all of them are, but at least some of them are. So he does not think that two cells in a freezer or eight cells or 16 cells is the same to child. In his view, it’s a potential child. So yeah.

Edney: I think you can do a lot with a vice president. We see Biden has his own issues with the abortion issue and, as people have pointed out, he demurred from saying that word in the State of the Union and we see just it was recently announced that Vice President Kamala Harris is going to visit an abortion clinic. So you can appease maybe the other side, and that might be what Trump is looking to do. I think, as Joanne mentioned, his base wants him to be anti-abortion, but now you’re getting all of these fractures in the Republican Party and you need someone that maybe can massage that and help with the crowd that’s been voting on the state level, voting on more of a personal level, to keep reproductive rights, even though his base doesn’t seem to be that that’s what they want. So I feel like he may be looking to choose someone who’s very different or has some differences that he can, not acknowledge, but that they can go out and please the other side.

Rovner: Of course, the only person who really fits that bill is Nikki Haley, who is very, very strongly anti-abortion, but at least tried, not very well, but tried to say that there are other people around and they believe other things and we should embrace them, too. I can’t think of another Republican except for Nikki Haley who’s really tried to do that. Margot, you wanted to say something?

Sanger-Katz: Oh, I was just going to say that if this reporting is correct, I think it does really reflect the political moment that Trump finds himself in. I think when he was running the last time, I think he really had to convince the anti-abortion voter, the evangelical voter, to come along with him. I think they had reservations about his character, about his commitment to their cause. He was seen as someone who maybe wasn’t really a true believer in these issues. And so I think he had to do these things, like choosing Mike Pence, choosing someone who was one of them. Pre-publishing a list of judges that he would consider for the Supreme Court who were seen as rock solid on abortion. He had to convince these voters that he was the real deal and that he was going to be on their side, and I just don’t think he really has that problem to the same degree right now.

I think he’s consolidated support among that segment of the electorate and his bigger concern going into the general election, and also the primaries are over, and so his bigger concern going into the general election is how to deal with more moderate swing voters, suburban women, and other groups who I think are a little bit concerned about the extreme anti-abortion policies that have been pursued in some of these states. And I think they might be reluctant to vote for Trump if they see him as being associated with those policies. So you see him maybe thinking about how to soften his image on this issue.

Rovner: I should point out the primaries aren’t actually over, most of states still haven’t had their primaries, but the primaries are effectively over for president because both candidates have now amassed enough delegates to have the nomination.

Sanger-Katz: Yes, that’s right. And it’s not over until the convention, although I think the way that the Republicans have arranged their convention, it’s very hard to imagine anyone other than Trump being president no matter what happens.

Rovner: Yes.

Sanger-Katz: Or not being president. Sorry, being the nominee.

Rovner: Being the nominee, yes, indeed. Well, we are only two weeks away from the Supreme Court oral arguments in the abortion pill case and a little over a month from another set of Supreme Court oral arguments surrounding whether doctors have to provide abortions in medical emergencies. And the cases just keep on coming in court this week. A three-judge panel from the 5th Circuit Court of Appeals upheld in part a lower court ruling that held that Texas’ law requiring parents to provide consent before their teenage daughters may obtain prescription birth control, Trump’s federal rules requiring patient confidentiality even for minors at federally funded Title X clinics.

Two things about this case. First, it’s a fight that goes all the way back to the Reagan administration and something called the “Squeal Rule,” which I did not cover, I only read about, but it’s something that the courts have repeatedly ruled against, that Title X is in fact allowed to maintain patient privacy even for teenagers. And the second thing is that the lower court ruling came from Texas federal Judge Matthew Kacsmaryk, who also wrote the decision attempting to overturn the FDA’s approval of the abortion drug mifepristone. This one, though, we might not expect to get to the Supreme Court.

Kenen: But we’re often wrong on these kinds of things.

Rovner: Yeah, that’s true.

Kenen: I mean, things that seem based on the historical pathway that shouldn’t have gotten to the court are getting to the court and the whole debate has shifted so far to the right. An interesting aside, there is a move, and I read this yesterday, but now I’m forgetting the details, so one of you can clarify for me. I can’t remember whether they’re considering doing this or the way they’ve actually put into place steps to prevent judge-shopping.

Rovner: That’s next.

Kenen: OK, I’m sorry, I’m doing such a good job of reading your mind.

Rovner: You are such a good job, Joanne.

Kenen: But I mean so many in these cases go back to one. If there was a bingo card for reproductive lawsuits, there might be one face in it.

Rovner: Two, Judge [Reed] O’Connor, remember the guy with the Affordable Care Act.

Kenen: Right. But so much of this is going back to judge-shopping or district-shopping for the judge. So a lot of these things that we thought wouldn’t get to the court have gotten to the court.

Rovner: Yeah, well, no, I was going to say in this case, though, there seems to be some suggestion that those who support the confidentiality and the Title X rules might not want to appeal this to the Supreme Court because they’re afraid they’ll lose. That this is the Supreme Court that overturned Roe, it would almost certainly be a Supreme Court that would rule against Title X confidentiality for birth control, that perhaps they want to just let this lie. I think as it stands now it only applies to the 5th Circuit. So Texas, Louisiana, and I forget what else is in the 5th Circuit, but it wouldn’t apply around the country and in this case, I guess it’s just Texas because it’s Texas’ law that conflicts with the rules.

Kenen: Except when one state does something, it doesn’t mean that it’s only Texas’ law six months from now.

Rovner: Right. What starts in Texas doesn’t necessarily stay in Texas.

Kenen: Right, it could go to Nevada. They may decide that they have a losing case and they want to wait 20 years, but other people end up taking things — I mean, it is very unpredictable and a huge amount of the docket is reproductive health right now.

Rovner: I would say the one thing we know is that Justice Alito, when he said that the Supreme Court was going to stop having to deal with this issue was either disingenuous or just very wrong because that is certainly not what’s happened. Well, as Joanne already jumped ahead a little bit, I mentioned Judge Kacsmaryk for a specific reason. Also this week, the Judicial Conference of the United States, which makes rules for how the federal courts work, voted to make it harder to judge-shop by filing cases in specific places like Amarillo, Texas, where there’s only one sitting federal judge. This is why Judge Kacsmaryk has gotten so many of those hot-button cases. Not because kookie stuff happens all the time in Amarillo, but because plaintiffs have specifically filed suit there to get their cases in front of him. The change by the judicial conference basically sets things back to the way they used to be, right, where it was at least partly random, which judge you got when you filed a case.

Kenen: But there are also some organizations that have intentionally based themselves in Amarillo so that they’re there. I mean, we may also see, if the rules go back to the old days, we may also still say you have a better case for filing in where you actually operate. So everybody just keeps hopping around and playing the field to their advantage.

Rovner: Yeah. And I imagine in some places there’s only a couple of judges, I think it was mostly Texas that had these one-judge districts where you knew if you filed there, you were going to get that judge, so — the people who watch these things and who worry about judge-shopping seem to be heartened by this decision by the judicial conference. So I’m not someone who is an expert in that sort of thing, but they seem to think that this will deter it, if not stop it entirely.

Moving on, remember a couple of weeks ago when I said that the hack of UnitedHealth [Group] subsidiary Change Healthcare was the most undercovered story in health? Clearly, I had no idea how true that was going to become. That processes 15 billion — with a B — claims every year handles one of every three patient records is still down, meaning hospitals, doctor’s offices, nursing homes, and all other manner of health providers still mostly aren’t getting paid. Some are worrying they soon won’t be able to pay their employees. How big could this whole mess ultimately become? I don’t think anybody anticipated it would be as big as it already is.

Sanger-Katz: I think it’s affecting a number of federal programs, too, that rely on this data, like quality measurement. And it really is a reflection, first of all, obviously of the consolidation of all of this, which I know that you guys have talked about on the podcast before, but also just the digitization and interconnectedness of everything. All of these programs are relying on this billing information, and we use that not just to pay people, but also to evaluate what kind of health care is being delivered, and what quality it is, and how much we should pay people in Medicare Advantage, and on all kinds of other things. So it’s this really complex, interconnected web of information that has been disrupted by this hack, and I think there’s going to be quite a lot of fallout.

Edney: And the coverage that I’ve read we’re potentially, and not in an alarmist way, but weeks away from maybe some patients not getting care because of this, particularly at the small providers. Some of my colleagues did a story yesterday on the small cancer providers who are really struggling and aren’t sure how long they’re going to be able to keep the lights on because they just aren’t getting paid. And there are programs now that have been set up but maybe aren’t offering enough money in these no-interest loans and things like that. So it seems like a really precarious situation for a lot of them. And now we see that HHS [Department of Health and Human Services] is looking into this other side of it. They’re going to investigate whether there were some HIPAA violations. So not looking exactly at the money exchange, but what happened in this hack, which is interesting because I haven’t seen a lot about that, and I did wonder, “Oh, what happened with these patients’ information that was stolen?” And UnitedHealth has taken a huge hit. I mean, it’s a huge company and it’s just taken a huge hit to its reputation and I think …

Rovner: And to its stock price.

Edney: And it’s stock price. That is very true. And they don’t know when they’re actually going to be able to resolve all of this. I mean, it’s just a huge mess.

Rovner: And not to forget they paid $22 million in ransom two weeks ago. When I saw that, I assumed that this was going to be almost over because usually I know when a hospital gets hacked, everybody says, don’t pay ransom, but they pay the ransom, they get their material back, they unlock what was locked away. And often that ends it, although it then encourages other people to do it because hey, if you do it, you can get paid ransom. Frankly, for UnitedHealthcare, I thought $22 million was a fairly low sum, but it does not appear — I think this has become such a mess that they’re going to have to rebuild the entire operation in order to make it work. At least, not a computer expert here. But that’s the way I understand this is going on.

Kenen: But I also think this, I mean none of us are cyber experts, but I’m also wondering if this is going to lead to some kind of rethinking about alternative ways of paying people. If this created such chaos, and not just chaos, damage, real damage, the incentive to do something similar to another, intermediate, even if it’s not quite this big. It’s like, “Wait, no one wants to be the next one.” So what kind of push is there going to be, not just for greater cybersecurity, but for Plan B when there is a crisis? And I don’t know if that’s something that the cyberexperts can put together in what kind of timeline — if HHS was to require that or whether the industry just decides they need it without requirements that this is not OK. It’s going to keep happening if it’s profitable for whoever’s doing it.

Rovner: I remember, ruefully, Joanne and I were there together covering HIPAA when they were passing it, which of course had nothing whatsoever to do with medical privacy at the time, but what it did do was give that first big push to start digitizing medical information. And there was all this talk about how wonderful it was going to be when we had all this digitally and researchers could do so much with it, and patients would be able to have all of their records in one place and …

Kenen: You get to have 19 passwords for 19 different forums now.

Rovner: Yes. But in 1995 it all seemed like a great, wonderful new world of everything being way more efficient. And I don’t remember ever hearing somebody talking about hacking this information, although as I point out the part of HIPAA that we all know, the patient medical records privacy, was added on literally at the last minute because someone said, “Uh-oh, if we’re going to digitize all this information, maybe we better be sure that it doesn’t fall into the wrong hands.” So at least somebody had some idea that we could be here. What are we 20, 30 … are we 30 years later? It’s been a long time. Anyway, that’s my two cents. All right, next up, Mississippi is flirting with actually expanding Medicaid under the Affordable Care Act. It’s one of only 10 remaining states that has not extended the program to people who have very low incomes but don’t meet the so-called categorical eligibility requirements like being a pregnant woman or child or person with a disability.

The Mississippi House passed an expansion bill including a fairly stringent work requirement by a veto-proof majority last week, week before.

Kenen: I think two weeks ago.

Rovner: But even if it passed the Senate and gets signed by the governor, which is still a pretty big if, the governor is reportedly lobbying hard against it. The plan would require a waiver from the Biden administration, which is not a big fan of work requirements. On the other hand, even if it doesn’t happen, and I would probably put my money at this point that it’s not going to happen this year, does it signal that some of the most strident, holdout states might be seeing the attraction of a 90% federal match and some of the pleas of their hospital associations? Anna, I see you nodding.

Edney: Yeah, I mean it was a little surprising, but this is also why I love statehouses. They just do these unexpected things that maybe make sense for their constituents sometimes, and it’s not all the time. I thought that it seemed like they had come around to the fact that this is a lot of money for Mississippi and it can help a lot of people. I think I’ve seen numbers like maybe adding 200,000 or so to the rolls, and so that’s a huge boost for people living there. And with the work requirement, is it true that even if the Biden administration rejects it, this plan can still go into place, right?

Kenen: The House version.

Edney: The House version.

Kenen: Yes.

Edney: Yeah.

Rovner: My guess is that’s why the governor is lobbying so hard against it. But yeah.

Kenen: I mean, I think that we had been watching a couple of states, we keep hearing Alabama was one of the states that has been talking about it but not doing anything about it. Wyoming, which surprised me when they had a little spurt of activity, which I think has subsided. I mean, what we’ve been saying ever since the Supreme Court made this optional for states more than 10 years ago now. Was it 2012? We’ve been saying eventually they’ll all do it. Keeping in mind that original Medicaid in [19]65, it took until 1982, which neither Julie nor I covered, until the last state, which was Arizona, took regular Medicare, Medicaid, the big — forget the ACA stuff. I mean, Medicaid was not in all states for almost 20 years. So I think we’ve all said eventually they’re going to do it. I don’t think that we are about to see a domino effect that North Carolina, which is a purple state, they did it a few months ago, maybe a year by now.

There was talk then that, “Oh, all the rest will do it.” No, all the rest will probably do it eventually, but not tomorrow. Mississippi is one of the poorest states in the country. It has one of the lowest health statuses of their population, obesity, diabetes, other chronic diseases. It has a very small Medicaid program. The eligibility levels are even for very, very, very poor childless adults, you can’t get on their plan. But have we heard rural hospitals pushing for this for a decade? Yes. Have we heard chambers of commerce in some of these states wanting it because communities without hospitals or communities without robust health systems are not economically attractive? We’ve been hearing the business community push for this for a long time. But the holdouts are still holdouts and I do think they will all take it. I don’t think it’s imminent.

Rovner: Yeah, I think that’s probably a fair assessment.

Kenen: It makes good economic sense, I mean, you’re getting all this money from the federal government to cover poor people and keep your hospitals open. But it’s a political fight. It’s not just a …

Rovner: It’s ideology.

Kenen: Yes, it’s not a [inaudible]. And it’s called Obamacare.

Edney: And sometimes things just have to fall into place. Mississippi got a new speaker of the House in their state government, so that’s his decision to push this as something that the House was going to take up. So whether that happens in other places, whether all those cards fall into places can take more time.

Kenen: Well, the last thing is we also know it’s popular with voters because we’ve seen it on the ballot in what, seven states, eight states, I forgot. And it won, and it won pretty big in really conservative states like Idaho and Utah. So as Julie said, this is ideology, it’s state lawmakers, it’s governors, it’s not voters, it’s not hospitals, it’s not chambers of commerce. It’s not particularly rural hospitals. A lot of people think this makes sense, but their own governments don’t think it makes sense.

Rovner: Yes. Well, another of those stories that moves very, very slowly. Finally, “This Week in Medical Misinformation”: I want to call out those who are fighting back against those who are accusing them of spreading false or misleading claims. I know this sounds confusing. Specifically, 16 conservative state attorneys general have called on YouTube to correct a, quote, “context disclaimer” that it put on videos posted by the anti-abortion Alliance Defending Freedom claiming serious and scientifically unproven harms that can be caused by the abortion pill mifepristone.

Unfortunately, for YouTube, their context disclaimer was a little clunky and conflated medication and surgical abortion, which still doesn’t make the original ADF videos more accurate, just means that the disclaimer wasn’t quite right. Meanwhile, more anti-abortion states are having legal rather than medical experts try to “explain” — and I put explain in air quotes — when an abortion to save the life of a woman is or isn’t legal, which isn’t really helping clarify the situation much if you are a doctor worried about having your license pulled or, at best, ending up having to defend yourself in court. It feels like misinformation is now being used as a weapon as well as a way to mislead people. Or am I reading this wrong?

Edney: I mean, I had to read that disclaimer a few times. Just the whole back-and-forth was confusing enough. And so it does feel like we’re getting into this new era of, if you say one wrong thing against the disinformation, that’s going to be used against you. So everybody has to be really careful. And the disclaimer, it was odd because I thought it said the procedure is [inaudible]. So that made me think, oh, they’re just talking about the actual surgical abortion. But it was clunky. I think clunky is a good word that you used for it. So yeah.

Rovner: Yeah, it worries me. I think I see all of this — people who want to put out misinformation. I’m not accusing ADF of saying, “We’re going to put out misinformation.” I think this is what they’ve been saying all along, but people who do want to put out misinformation for misinformation’s sake are then going to hit back at the people who point out that it’s misinformation, which of course there’s no way for the public to then know who the heck is right. And it undercuts the idea of trying to point out some of this misinformation. People ask me wherever I go, “What are we going to do about this misinformation?” My answer is, “I don’t know, but I hope somebody thinks of something.”

Kenen: I mean, if you word something poorly, you got to fix it. I mean, that’s just the bottom line. Just like we as journalists have to come clean when we make a mistake. And it feels bad to have to write a correction, but we do it. So Google has been working on — there’s a group convened by the Institute of Medicine [National Academy of Medicine] and the World Health Organization and some others that have come out with guidelines and credible communicators, like who can you trust? I mean, we talked about the RSV [respiratory syncytial virus] story I did a few weeks ago, and if you Google RSV vaccine on and you look on YouTube or Google, it’s not that there’s zero misinformation, but there’s a lot less than there used to be. And what comes up first is the reliable stuff: CDC, Mayo Clinic, things like that. So YouTube has been really working on weeding out the disinformation, but again, for their own credibility, if they want to be seen as clean arbiters of going with credibility, if they get something mushy, they’ve got to de-mush it at the end.

Rovner: And I will say that Twitter of all places — or X, whatever you want to call it, the place that everybody now is like, “Don’t go there. It’s just a mess” — has these community notes that get attached to some of the posts that I actually find fairly helpful and it lets you rate it.

Kenen: Some of them, I mean overall, there’s actually research on that. We’ll talk about my book when it comes out next year, but we have stuff. I’m in the final stages of co-authoring a book that … it goes into misinformation, which is why I’ve learned a lot about this. Community Notes has been really uneven and …

Rovner: I guess when it pops up in my feed, I have found it surprisingly helpful and I thought, “This is not what I expect to see on this site.”

Kenen: And it hasn’t stopped [Elon] Musk himself from tweeting misinformation about drugs …

Rovner: That’s certainly true.

Kenen: … drugs he doesn’t like, including the birth control pill he tells people not to use because it promotes suicide. So basically, yeah, Julie, you’re right that we need tools to fight it, and none of the tools we currently have are particularly effective yet. And absolutely everything gets politicized.

Sanger-Katz: And it’s a real challenge I think for these social media platforms. You know what I mean? They don’t really want to be in the editorial business. I think they don’t really want to be in the moderation business in large part. And so you can see them grappling with the problem of the most egregious forms of misinformation on their platforms, but doing it clumsily and anxiously and maybe making mistakes along the way. I think it’s not a natural function for these companies, and I think it’s not a comfortable function for the people that run these companies, who I think are much more committed to free discourse and algorithmic sharing of information and trying to boost engagement as opposed to trying to operate the way a newspaper editor might be in selecting the most useful and true information and foregrounding that.

Kenen: Yeah, I mean that’s what the Supreme Court has been grappling with too, is another [inaudible] … what are the rules of the game? What should be legally enforced? What is their responsibility, that the social media company’s responsibilities, to moderate versus what is just people get to post? I mean, Google’s trying to use algorithms to promote credible communicators. It’s not that nothing wrong is there, but it’s not what you see first.

Rovner: I think it’s definitely the issue of the 2020s. It is not going away anytime soon.

Kenen: And it’s not just about health.

Rovner: Oh, absolutely. I know. Well, that is the news for this week. Now, we will play my interview with Dr. Kelly Henning of Bloomberg Philanthropies, and then we’ll come back with our extra credits.

I am so pleased to welcome to the podcast Dr. Kelly Henning, who heads the Bloomberg Philanthropies Public Health program. She’s here to tell us about a new documentary series about the past, present, and future of public health called “The Invisible Shield.” It premieres on PBS on March 26. Dr. Henning, thank you so much for joining us.

Kelly Henning: Thank you for having me.

Rovner: So the tagline for this series is, “Public health saved your life today, and you don’t even know it.” You’ve worked in public health in a lot of capacities for a lot of years, so have I. Why has public health been so invisible for most of the time?

Henning: It’s a really interesting phenomenon, and I think, Julie, we all take public health for granted on some level. It is what really protects people across the country and across the world, but it is quite invisible. So usually if things are working really well in public health, you don’t think about it at all. Things like excellent vaccination programs, clean water, clean air, these are all public health programs. But I think most people don’t really give them a lot of thought every day.

Rovner: Until we need them, and then they get completely controversial.

Henning: So to that point, covid-19 and the recent pandemic really was a moment when public health was in the spotlight very much no longer behind an invisible shield, but quite out in front. And so this seemed like a moment when we really wanted to unpack a little bit more around public health and talk about how it works, why it’s so important, and what some of the opportunities are to continue to support it.

Rovner: I feel like even before the pandemic, though, the perceptions of public health were changing. I guess it had something to do with a general anti-science, anti-authority rising trend. Were there warning signs that public health was about to explode in people’s consciousness in not necessarily a good way?

Henning: Well, I think those are all good points, but I also think that there are young generations of students who have become very interested in public health. It’s one of the leading undergraduate majors nowadays. Johns Hopkins Bloomberg School of Public Health has more applications than ever before, and that was occurring before the pandemic and even more so throughout. So I think it’s a bit of a mixed situation. I do think public health in the United States has had some really difficult times in terms of life expectancy. So we started to see declines in life expectancy way back in 2017. So we have had challenges on the program side, but I think this film is an opportunity for us to talk more deeply about public health.

Rovner: Remind people what are some of the things that public health has brought us besides, we talk about vaccines and clean water and clean air, but there’s a lot more to public health than the big headlines.

Henning: Yeah, I mean, for example, seat belts. Every day we get into our vehicle, we put a seat belt on, but I think most people don’t realize that was initially extremely controversial and actually not so easy to get that policy in place. And yet it saved literally tens of hundreds of thousands of lives across the U.S. and now across the world. So seat belts are something that often come to mind. Similar to that are things like child restraints, what we would call car seats in the U.S. That’s another similar strategy that’s been very much promoted and the evidence has been created through public health initiatives. There are other things like window guards. In cities, there are window guards that help children not fall out of windows from high buildings. Again, those are public health initiatives that many people are quite unaware of.

Rovner: How can this documentary help change the perception of public health? Right now I think when people think of public health, they think of people fighting over mask mandates and people fighting over covid vaccines.

Henning: Yeah, I really hope that this documentary will give people some perspective around all the ways in which public health has been working behind the scenes over decades. Also, I hope that this documentary will allow the public to see some of those workers and what they face, those public health front-line workers. And those are not just physicians, but scientists, activists, reformers, engineers, government officials, all kinds of people from all disciplines working in public health. It’s a moment to shine a light on that. And then lastly, I hope it’s hopeful. I hope it shows us that there are opportunities still to come in the space of public health and many, many more things we can do together.

Rovner: Longtime listeners to the podcast will know that I’ve been exploring the question of why it has been so difficult to communicate the benefits of public health to the public, as I’ve talked to lots of people, including experts in messaging and communication. What is your solution for how we can better communicate to the public all of the things that public health has done for them?

Henning: Well, Julie, I don’t have one solution, but I do think that public health has to take this issue of communication more seriously. So we have to really develop strategies and meet people where they are, make sure that we are bringing those messages to communities, and the messengers are people that the community feels are trustworthy and that are really appropriate spokespeople for them. I also think that this issue of communications is evolving. People are getting their information in different ways, so public health has to move with the times and be prepared for that. And lastly, I think this “Invisible Shield” documentary is an opportunity for people to hear and learn and understand more about the history of public health and where it’s going.

Rovner: Dr. Kelly Henning, thank you so much for joining us. I really look forward to watching the entire series. 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 have everybody’s favorite story this week. Why don’t you go first?

Kenen: I demanded the right to do this one, and it’s Olga, I think her last name is pronounced Khazan. I actually know her and I don’t know how to pronounce her name, but Olga Khazan, apologies if I’ve got it wrong, from The Atlantic, has a story that says “Frigid Offices Might Be Killing Women’s Productivity.” Well, from all of us who are cold, I’m not sure I would want to use the word “frigid,” but of all of us who are cold in the office and sitting there with blankets. I used to have a contraband, very small space heater hidden behind a trash basket under my desk. We freeze because men like colder temperatures and they’re wearing suits. So we’ve been complaining about being cold, but there’s actually a study now that shows that it actually hurts our actual cognitive performance. And this is one study, there’s more to come, but it may also be one explanation for why high school girls do worse than high school boys on math SATs.

Rovner: Did not read that part.

Kenen: It’s not just comfort in the battle over the thermostat, it’s actually how do our brains function and can we do our best if we’re really cold?

Rovner: True. Anna.

Edney: This is a departure from my normal doom and gloom. So I’m happy to say this is in Scientific American, “How Hospitals Are Going Green Under Biden’s Climate Legislation.” I thought it was interesting. Apparently if you’re a not-for-profit, there were tax credits that you were not able to use, but the Inflation Reduction Act changed that so that there are some hospitals, and they talked to this Valley Children’s in California, that there had been rolling blackouts after some fires and things like that, and they wanted to put in a micro-grid and a solar farm. And so they’ve been able to do that.

And health care contributes a decent amount. I think it’s like 8.5% of U.S. greenhouse gas emissions. And Biden had established this Office of Climate Change [and Health Equity] a few years ago and within the health department. So this is something that they’re trying to do to battle those things. And I thought that it was just interesting that we’re talking about this on the day that the top story, Margot, in The New York Times is, not by you, but is about how there’s this huge surge in energy demand. And so this is a way people are trying to do it on their own and not be so reliant on that overpowered grid.

Rovner: KFF Health News has done a bunch of stories about contribution to climate change from the health sector, which I had no idea, but it’s big. Margot.

Sanger-Katz: I wanted to highlight the second story in this Lev Facher series on treatment for opioid addiction in Stat called “Rigid Rules at Methadone Clinics Are Jeopardizing Patients’ Path to Recovery From Opioid Addiction,” which is a nice long title that tells you a lot about what is in the story. But I think methadone treatment is a really evidence-based treatment that can be really helpful for a lot of people who have opioid addiction. And I think what this story highlights is that the mechanics of how a lot of these programs work are really hard. They’re punitive, they’re difficult to navigate, they make it really hard for people to have normal lives while they’re undergoing methadone treatment and then, in some cases, arbitrarily so. And so I think it just points out that there are opportunities to potentially do this better in a way that better supports recovery and it supports the lives of people who are in recovery.

Rovner: Yeah, it used the phrase “liquid handcuffs,” which I had not seen before, which was pretty vivid. For those of you who weren’t listening, the Part One of this series was an extra credit last week, so I’ll post links to both of them. My story’s from our friend Dan Diamond at The Washington Post. It’s called “Navy Demoted Ronnie Jackson After Probe Into White House Behavior.” Ronnie Jackson, in case you don’t remember, was the White House physician under Presidents [Barack] Obama and Trump and a 2021 inspector general’s report found, and I’m reading from the story here, quote, “that Jackson berated subordinates in the White House medical unit, made sexual and denigrating statements about a female subordinate, consumed alcohol inappropriately with subordinates, and consumed the sleep drug Ambien while on duty as the president’s physician.” In response to the report, the Navy demoted Jackson retroactively — he’s retired —from a rear admiral down to a captain.

Now, why is any of this important? Well, mainly because Jackson is now a member of Congress and because he still incorrectly refers to himself as a retired admiral. It’s a pretty vivid story, you should really read it.

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. Margot, where are you these days?

Sanger-Katz: I’m at all the places @Sanger-Katz, although not particularly active on any of them.

Rovner: Anna.

Edney: On X, it’s @annaedney and on Threads it’s @anna_edneyreports.

Rovner: Joanne.

Kenen: I’m Threads @joannekenen1, and I’ve been using LinkedIn more. I think some of the other panelists have said that people are beginning to treat that as a place to post, and I think many of us are seeing a little bit more traction there.

Rovner: Great. Well, we will be back in your feed next week. Until then, be healthy.

Credits

Francis Ying
Audio producer

Emmarie Huetteman
Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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

USE OUR CONTENT

This story can be republished for free (details).

A doctor confirmed that Hyatt had covid-19 and sent him to CVS with a prescription for the antiviral drug Paxlovid, the generally recommended medicine to fight covid. Hyatt handed the pharmacist the script, but then, he said, “She kept avoiding me.”

She finally looked up from her computer and said, “It’s $1,600.”

The generally healthy 76-year-old went out to the car to consult his wife about their credit card limits. “I don’t think I’ve ever spent more than $20 on a prescription,” the astonished Hyatt recalled.

That kind of sticker shock has stunned thousands of sick Americans since late December, as Pfizer shifted to commercial sales of Paxlovid. Before then, the federal government covered the cost of the drug.

The price is one reason Paxlovid is not reaching those who need it most. And patients who qualify for free doses, which Pfizer offers under an agreement with the federal government, often don’t realize it or know how to get them.

“If you want to create a barrier to people getting a treatment, making it cost a lot is the way to do it,” said William Schaffner, a professor at Vanderbilt University School of Medicine and spokesperson for the National Foundation for Infectious Diseases.

Public and medical awareness of Paxlovid’s benefits is low, and putting people through an application process to get the drug when they’re sick is a non-starter, Schaffner said. Pfizer says it takes only five minutes online.

It’s not an easy drug to use. Doctors are wary about prescribing it because of dangerous interactions with common drugs that treat cholesterol, blood clots, and other conditions. It must be taken within five days of the first symptoms. It leaves a foul taste in the mouth. In one study, 1 in 5 patients reported “rebound” covid symptoms a few days after finishing the medicine — though rebound can also occur without Paxlovid.

A recent JAMA Network study found that sick people 85 and older were less likely than younger Medicare patients to get covid therapies like Paxlovid. The drug might have prevented up to 27,000 deaths in 2022 if it had been allocated based on which patients were at highest risk from covid. Nursing home patients, who account for around 1 in 6 U.S. covid deaths, were about two-thirds as likely as other older adults to get the drug.

Shrunken confidence in government health programs is one reason the drug isn’t reaching those who need it. In senior living facilities, “a lack of clear information and misinformation” are “causing residents and their families to be reluctant to take the necessary steps to reduce covid risks,” said David Gifford, chief medical officer for an association representing 14,000 health care providers, many in senior care.

The anti-vaxxers spreading falsehoods about vaccines have targeted Paxlovid as well. Some call themselves anti-paxxers.

“Proactive and health-literate people get the drug. Those who are receiving information more passively have no idea whether it’s important or harmful,” said Michael Barnett, a primary care physician at Brigham and Women’s Hospital and an associate professor at Harvard, who led the JAMA Network study.

In fact, the drug is still free for those who are uninsured or enrolled in Medicare, Medicaid, or other federal health programs, including those for veterans.

That’s what rescued Hyatt, whose Department of Veterans Affairs health plan doesn’t normally cover outpatient drugs. While he searched on his phone for a solution, the pharmacist’s assistant suddenly appeared from the store. “It won’t cost you anything!” she said.

As Hyatt’s case suggests, it helps to know to ask for free Paxlovid, although federal officials say they’ve educated clinicians and pharmacists — like the one who helped Hyatt — about the program.

“There is still a heaven!” Hyatt replied. After he had been on Paxlovid for a few days his symptoms were gone and his surgery was rescheduled.

About That $1,390 List Price

Pfizer sold the U.S. government 23.7 million five-day courses of Paxlovid, produced under an FDA emergency authorization, in 2021 and 2022, at a price of around $530 each.

Under the new agreement, Pfizer commits to provide the drug for the beneficiaries of the government insurance programs. Meanwhile, Pfizer bills insurers for some portion of the $1,390 list price. Some patients say pharmacies have quoted them prices of $1,600 or more.

How exactly Pfizer arrived at that price isn’t clear. Pfizer won’t say. A Harvard study last year estimated the cost of producing generic Paxlovid at about $15 per treatment course, including manufacturing expenses, a 10% profit markup, and 27% in taxes.

Pfizer reported $12.5 billion in Paxlovid and covid vaccine sales in 2023, after a $57 billion peak in 2022. The company’s 2024 Super Bowl ad, which cost an estimated $14 million to place, focused on Pfizer’s cancer drug pipeline, newly reinforced with its $43 billion purchase of biotech company Seagen. Unlike some other recent oft-aired Pfizer ads (“If it’s covid, Paxlovid”), it didn’t mention covid products.

Connecting With Patients

The other problem is getting the drug where it is needed. “We negotiated really hard with Pfizer to make sure that Paxlovid would be available to Americans the way they were accustomed to,” Department of Health and Human Services Secretary Xavier Becerra told reporters in February. “If you have private insurance, it should not cost you much money, certainly not more than $100.”

Yet in nursing homes, getting Paxlovid is particularly cumbersome, said Chad Worz, CEO of the American Society of Consultant Pharmacists, specialists who provide medicines to care homes.

If someone in long-term care tests positive for covid, the nurse tells the physician, who orders the drug from a pharmacist, who may report back that the patient is on several drugs that interact with Paxlovid, Worz said. Figuring out which drugs to stop temporarily requires further consultations while the time for efficacious use of Paxlovid dwindles, he said.

His group tried to get the FDA to approve a shortcut similar to the standing orders that enable pharmacists to deliver anti-influenza medications when there are flu outbreaks in nursing homes, Worz said. “We were close,” he said, but “it just never came to fruition.” “The FDA is unable to comment,” spokesperson Chanapa Tantibanchachai said.

Los Angeles County requires nursing homes to offer any covid-positive patient an antiviral, but the Centers for Medicare & Medicaid Services, which oversees nursing homes nationwide, has not issued similar guidance. “And this is a mistake,” said Karl Steinberg, chief medical officer for two nursing home chains with facilities in San Diego County, which also has no such mandate. A requirement would ensure the patient “isn’t going to fall through the cracks,” he said.

While it hasn’t ordered doctors to prescribe Paxlovid, CMS on Jan. 4 issued detailed instructions to health insurers urging swift approval of Paxlovid prescriptions, given the five-day window for the drug’s efficacy. It also “encourages” plans to make sure pharmacists know about the free Paxlovid arrangement.

Current covid strains appear less virulent than those that circulated earlier in the pandemic, and years of vaccination and covid infection have left fewer people at risk of grave outcomes. But risk remains, particularly among older seniors, who account for most covid deaths, which number more than 13,500 so far this year in the U.S.

Steinberg, who sees patients in 15 residences, said he orders Paxlovid even for covid-positive patients without symptoms. None of the 30 to 40 patients whom he prescribed the drug in the past year needed hospitalization, he said; two stopped taking it because of nausea or the foul taste, a pertinent concern in older people whose appetites already have ebbed.

Steinberg said he knew of two patients who died of covid in his companies’ facilities this year. Neither was on Paxlovid. He can’t be sure the drug would have made a difference, but he’s not taking any chances. The benefits, he said, outweigh the risks.

Reporter Colleen DeGuzman contributed to this report.

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

USE OUR CONTENT

This story can be republished for free (details).

On Thursday night, President Biden proposed expanding one of his most popular policies: the Medicare price negotiation process that was put in place as part of the Inflation Reduction Act. “Americans pay more for prescription drugs than anywhere else,” Biden said. “It’s wrong and I’m ending it.”

Obviously, the drug industry is not going to be happy about new price limitations in the U.S., the biggest market for pharmaceuticals. But, even more than that, Biden’s move emphasizes a painful reality: That pharmaceutical companies remain one of the biggest political targets in the country — despite their key role in addressing the Covid-19 pandemic and their development of wildly effective new weight loss drugs.

Continue to STAT+ to read the full story…

The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

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

President Joe Biden is working to lay out his health agenda for a second term, even as Congress races to finish its overdue spending bills for the fiscal year that began last October.

Meanwhile, Alabama lawmakers try to reopen the state’s fertility clinics over the protests of abortion opponents, and pharmacy giants CVS and Walgreens announce they are ready to begin federally regulated sales of the abortion pill mifepristone.

This week’s panelists are Julie Rovner of KFF Health News, Sarah Karlin-Smith of the Pink Sheet, Alice Miranda Ollstein of Politico, and Sandhya Raman of CQ Roll Call.

Panelists

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah's stories.

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories.

Sandhya Raman
CQ Roll Call

@SandhyaWrites

Read Sandhya's stories.

Among the takeaways from this week’s episode:

• Lawmakers in Washington are completing work on the first batch of spending bills to avert a government shutdown. The package includes a bare-bones health bill, leaving out certain bipartisan proposals that have been in the works on drug prices and pandemic preparedness. Doctors do get some relief in the bill from Medicare cuts that took effect in January, but the pay cuts are not canceled.
• The White House is floating proposals on drug prices that include expanding Medicare negotiations to more drugs; applying negotiated prices earlier in the market life of drugs; and capping out-of-pocket maximum drug payments at $2,000 for all patients, not just seniors. At least some of the ideas have been proposed before and couldn’t clear even a Democratic-controlled Congress. But they also keep up pressure on the pharmaceutical industry as it challenges the government in court — and as Election Day nears.
• Many in public health are expressing frustration after the Centers for Disease Control and Prevention softened its covid-19 isolation guidance. The change points to the need for a national dialogue about societal support for best practices in public health — especially by expanding access to paid leave and child care.
• Meanwhile, CVS and Walgreens announced their pharmacies will distribute the abortion pill mifepristone, and enthusiasm is waning for the first over-the-counter birth control pill amid questions about how patients will pay its higher-than-anticipated list price of $20 per month.
• Alabama’s governor signed a law protecting access to in vitro fertilization, granting providers immunity from the state Supreme Court’s recent “embryonic personhood” decision. But with opposition from conservative groups, is the new law also bound for the Alabama Supreme Court?

Also this week, Rovner interviews White House domestic policy adviser Neera Tanden about Biden’s health agenda.

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

Julie Rovner: NPR’s “How States Giving Rights to Fetuses Could Set Up a National Case on Abortion,” by Regan McCarthy.

Sarah Karlin-Smith: Stat’s  “The War on Recovery,” by Lev Facher.

Alice Miranda Ollstein: KFF Health News’ “Why Even Public Health Experts Have Limited Insight Into Stopping Gun Violence in America,” by Christine Spolar.

Sandhya Raman: The Journal’s “‘My Son Is Not There Anymore’: How Young People With Psychosis Are Falling Through the Cracks,” by Órla Ryan.

Also mentioned on this week’s podcast:

• NBC News’ “CDC Updates Covid Isolation Guidelines for People Who Test Positive,” by Erika Edwards.
• New York Magazine’s “Did Trump Really Vow to Defund Schools With Vaccine Mandates?” by Margaret Hartmann.

click to open the transcript

Transcript: The State of the Union Is … Busy

KFF Health News’ ‘What the Health?’Episode Title: The State of the Union Is … BusyEpisode Number: 337Published: March 7, 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, March 7, at 9 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 Sandhya Raman, of CQ Roll Call.

Raman: Good morning.

Rovner: Later in this episode we’ll have my interview with White House domestic policy adviser Neera Tanden about the Biden administration’s health accomplishment so far and their priorities for 2024. But first, this week’s news. It is a big week here in the nation’s capital. In addition to sitting through President Biden’s State of the Union address, lawmakers appear on the way to finishing at least some of the spending bills for the fiscal year that began last Oct. 1. Good thing, too, because the president will deliver to Congress a proposed budget for the next fiscal year that starts Oct. 1, 2024, next Monday. Sandhya, which spending bills are getting done this week, and which ones are left?

Sandhya Raman: We’re about half-and-half as of last night. The House is done with their six-bill deal that they released. Congress came to a bipartisan agreement on Sunday and released then, so the FDA is in that part, in the agriculture bill. We also have a number of health extenders that we can …

Rovner: Which we’ll get to in a second.

Raman: Now it’s on to the Senate and then to Biden’s desk, and then we still have the Labor HHS [Department of Labor and Department of Health and Human Services] bill with all of the health funding that we’re still waiting on sometime this month.

Rovner: Yeah, it’s fair to say that the half that they’re getting done now are the easy ones, right? It’s the big ones that are left.

Ollstein: Although, if they were so easy, why didn’t they get them done a long time ago? There have been a lot of fights over policy riders that have been holding things up, in addition to disagreements about spending levels, which are perennial of course. But I was very interested to see that in this first tranche of bills, Republicans dropped their insistence on a provision banning mail delivery of abortion pills through the FDA, which they had been fighting for for months and months and months, and that led to votes on that particular bill being canceled multiple times. It’s interesting that they did give up on that.

Rovner: Yes. I shouldn’t say these were the easy ones, I should say these were the easier ones. Not that there’s a reason that it’s March and they’re only just now getting them done, but they have until the 22nd to get the rest of them done. How is that looking?

Raman: We still have not seen text on those yet. If they’re able to get there, we would see that in the next week or so, before then. And it remains to be seen, that traditionally the health in Labor HHS is one of the trickiest ones to get across the finish line in a normal year, and this year has been especially difficult given, like Alice said, all of the different policy riders and different back-and-forth there. It remains to be seen how that’ll play out.

Rovner: They have a couple of weeks and we will see. All right, well as you mentioned, as part of this first spending minibus, as they like to call it, is a small package of health bills. We talked about some of these last week, but tell us what made the final cut into this current six-bill package.

Raman: It’s whittled down a lot from what I think a lot of lawmakers were hoping. It’s pretty bare-bones in terms of what we have now. It’s a lot of programs that have traditionally been added to funding bills in the past, extending the special diabetes program, community health center funding, the National Health Service Corps, some sexual risk-avoidance programs. All of these would be pegged to the end of 2024. It kind of left out a lot of the things that Congress has been working on, on health care.

Rovner: Even bipartisan things that Congress has been working for on health care.

Raman: Yeah. They didn’t come to agreement on some of the pandemic and emergency preparedness stuff. There were some provisions for the SUPPORT Act — the 2018 really big opioid law — but a lot of them were not there. The PBM [pharmacy benefit managers] reform, all of that, was not, not this round.

Rovner: But at least judging from the press releases I got, there is some relief for doctor fees in Medicare. They didn’t restore the entire 3.3% cut, I believe it is, but I think they restored all but three-quarters of a percent of the cut. It’s made doctors, I won’t say happy, but at least they got acknowledged in this package and we’ll see what happens with the rest of them. Well, by the time you hear this, the president’s State of the Union speech will have come and gone, but the White House is pitching hard some of the changes that the president will be proposing on drug prices. Sarah, how significant are these proposals? They seem to be bigger iterations of what we’re already doing.

Karlin-Smith: Right. Biden is proposing expanding the Medicare Drug [Price] Negotiation program that Congress passed through the Inflation Reduction Act. He wants to go from Medicare being able to negotiate eventually up to 20 drugs a year to up to 50. He seems to be suggesting letting drugs have a negotiated price earlier in their life, letting them have less time on the market before negotiation. Also, thinking about applying some of the provisions of the IRA right now that only apply to Medicare to people in commercial plans, so this $2,000 maximum out-of-pocket spending for patients. Then also there are penalties that drugmakers get if they raise prices above inflation that would also apply to commercial plans. He’s actually proposed a lot of this before in previous budgets and actually Democrats, if you go back in time, tried to actually get some of these things in the initial IRA and even with a Democratic-controlled capital, could not actually get Democratic agreement to go broader on some of the provisions.

Rovner: Thank you, Sen. [Joe] Manchin.

Karlin-Smith: That said, I think it is significant that Biden is still pressing on this, even if they would really need big Democratic majorities and more progressive Democratic majorities to get this passed, because it’s keeping the pressure on the pharmaceutical industry. There were times before the IRA was passed where people were saying, “Pharma just needs to take this hit, it’s not going to be as bad as they think it is. Then they’ll get a breather for a while.” They’re clearly not getting that. The public is still very concerned about drug pricing, and they’re both fighting the current IRA in court. Actually, today there’s a number of big oral arguments happening. At the same time, they’re trying to get this version of the IRA improved somehow through legislation. All at the same time Democrats are saying, “Actually, this is just the start, we’re going to keep going.” It’s a big challenge and maybe not the respite they thought they might’ve gotten after this initial IRA was passed.

Rovner: But as you point out, still a very big voting issue. All right, well I want to talk about covid, which we haven’t said in a while. Last Friday, the Centers for Disease Control and Prevention officially changed its guidance about what people should do if they get covid. There’s been a lot of chatter about this. Sarah, what exactly got changed and why are people so upset?

Karlin-Smith: The CDC’s old guidance, if you will, basically said if you had covid, you should isolate for five days. If you go back in time, you’ll remember we probably talked about how that was controversial on its own when that first happened, because we know a lot of people are infectious and still test positive for covid much longer than five days. Now they’re basically saying, if you have covid, you can return to the public once you’re fever-free for 24 hours and your symptoms are improving. I think the implication here is, that for a lot of people, this would be before five days. They do emphasize to some degree that you should take precautions, masking, think about ventilation, maybe avoid vulnerable people if you can.

But I think there’s some in the public health world that are really frustrated by this. They feel like it’s not science- and evidence-based. We know people are going to be infectious and contagious in many cases for longer than periods of time where the CDC is saying, “Sure, go out in public, go back to work.” On the flip side, CDC is arguing, people weren’t really following their old guidance. In part because we don’t have a society set up to structurally allow them to easily do this. Most people don’t have paid sick time. They maybe don’t have people to watch their children if they’re trying to isolate from them. I think the tension is that, we’ve learned a lot from covid and it’s highlighted a lot of the flaws already in our public health system, the things we don’t do well with other respiratory diseases like flu, like RSV. And CDC is saying, “Well, we’re going to bring covid in line with those,” instead of thinking about, “OK, how can we actually improve as a society managing respiratory viruses moving forward, come up with solutions that work.”

I think there probably are ways for CDC to acknowledge some of the realities. CDC does not have the power to give every American paid sick time. But if CDC doesn’t push to say the public needs this for public health, how are we ever going to get there? I think that’s really a lot of the frustration in a lot of the public health community in particular, that they’re just capitulating to a society that doesn’t care about public health instead of really trying to push the agenda forward.

Rovner: Or a society that’s actively opposed to public health, as it sometimes seems. I know speaking for my NF1, I was sick for most of January, and I used up all my covid tests proving that I didn’t have covid. I stayed home for a few days because I felt really crappy, and when I started to feel better, I wore a mask for two weeks because, hello, that seemed to be a practical thing to do, even though I think what I had was a cold. But if I get sick again, I don’t have any more covid tests and I’m not going to take one every day because now they cost $20 a pop. Which I suspect was behind a lot of this. It’s like, “OK, if you’re sick with a respiratory ailment, stay home until you start to feel better and then be careful.” That’s essentially what the advice is, right?

Ollstein: Yeah. Although one other criticism I heard was specifically basing the new guidance on being fever-free, a lot of people don’t get a fever, they have other symptoms or they don’t have symptoms at all, and that’s even more insidious for allowing spread. I heard that criticism as well, but I completely agree with Sarah, that this seems like allowing public behavior to shape the guidance rather than trying to shape the public behavior with the guidance.

Rovner: Although some of that is how public health works, they don’t want to recommend things that they know people aren’t going to do or that they know the vast majority of people aren’t going to do. This is the difficulty of public health, which we will talk about more. While meanwhile, speaking in Virginia earlier this week, former President Donald Trump vowed to pull all federal funding for schools with vaccine mandates. Now, from the context of what he was saying, it seemed pretty clear that he was talking only about covid vaccine mandates, but that’s not what he actually said. What would it mean to lift all school vaccine mandates? That sounds a little bit scary.

Raman: That would basically affect almost every public school district nationwide. But even if it’s just covid shots, I think that’s still a little bit of a shift. You see Trump not taking as much public credit anymore for the fact that the covid vaccines were developed under his administration, Operation Warp Speed, that started under the Trump administration. It’s a little bit of a shift compared to then.

Rovner: I’m old enough to remember two cycles ago, when there were Republicans who were anti-vaccine or at least anti-vaccine curious, and the rest of the Republican Party was like, “No, no, no, no, no.” That doesn’t seem to be the case anymore. Now it seems to be much more mainstream to be anti-vax in general. Cough, cough. We see the measles outbreak in Florida, so we will clearly watch that space, too.

All right, moving on to abortion. Later this month, the Supreme Court will hear oral argument in the case that could severely restrict distribution of the abortion pill mifepristone. But in the meantime, pharmacy giants, CVS and Walgreens have announced they will begin distributing the abortion pill at their pharmacies. Alice, why now and what does this mean?

Ollstein: It’s interesting that this came more than a year after the big pharmacies were given permission to do this. They say it took this long because they had to get all of these systems up in place to make sure that only certified pharmacists were filling prescriptions from certified prescribing doctors. All of this is required because when the Biden administration, when the FDA, moved to allow this form of distribution of the abortion pill, they still left some restrictions known as REMS [risk evaluation and mitigation strategies] in place. That made it take a little more time, more bureaucracy, more box checking, to get to this point. It is interesting that given the uncertainty with the Supreme Court, they are moving forward with this. It’s this interesting state-versus-federal issue, because we reported a year ago that Walgreens and CVS would not distribute the pills in states where Republican state attorneys general have threatened them with lawsuits.

So, they’ve noted the uncertainty at the state level, but even with this uncertainty at the federal level with the Supreme Court, which could come in and say this form of distribution is not allowed, they’re still moving forward. It is limited. It’s not going to be, even in blue states where abortion is protected by law, they’re not going to be at every single CVS. They’re going to do a slower, phased rollout, see how it goes. I’m interested in seeing if any problems arise. I’m also interested in seeing, anti-abortion groups have vowed to protest these big pharmacy chains for making this medication available. They’ve disrupted corporate meetings, they’ve protested outside brick-and-mortar pharmacies, and so we’ll see if any of that continues and has an effect as well.

Rovner: It’s hard to see how the anti-abortion groups though could have enough people to protest every CVS and Walgreens selling the abortion pill. That will be an interesting numbers situation. Well, in a case of not-so-great timing, if only for the confusion potential, also this week we learned that the first approved over-the-counter birth control pill, called Opill, is finally being shipped. Now, this is not the abortion pill. It won’t require a prescription, that’s the whole point of it being over-the-counter. But I’ve seen a lot of advocacy groups that worked on this for years now complaining that the $20 per month that the pill is going to cost, it’s still going to be too much for many who need it. Since it’s over-the-counter, it’s not going to be covered by most insurance. This is a separate issue of its own that’s a little bit controversial.

Karlin-Smith: You can with over-the-counter drugs, if you have a flexible spending account or an HSA or something else, you may be able to use money that’s somehow connected to your health insurance benefit or you’re getting some tax breaks on it. However, I think this over-the-counter pill is probably envisioned most for people that somehow don’t have insurance, because we know the Affordable Care Act provides birth control methods with no out-of-pocket costs for people. So if you have insurance, most likely you would be getting a better deal getting a prescription and going that route for the same product or something similar.

The question becomes then, does this help the people who fall in those gaps who are probably likely to have less financial means to begin with? There’s been some polling and things that suggest this may be too high a price point for them. I know there are some discounts on the price. Essentially if you can buy three months upfront or even some larger quantities, although again that means you then have to have that larger sum of money upfront, so that’s a big tug of war. I think the companies argue this is pretty similar pricing to other over-the-counter drug products in terms of volume and stuff, so we’ll see what happens.

Rovner: I think they were hoping it was going to be more like $5 a month and not $20 a month. I think that came as a little bit of a disappointment to a lot of these groups that have been working on this for a very long time.

Ollstein: Just quickly, the jury is also still out on insurance coverage, including advocacy groups are also pressuring public insurance, Medicaid, to come out and say they’ll cover it as well. So we’ll keep an eye on that.

Rovner: Yeah, although Medicaid does cover prescription birth control. All right, well let us catch up on the IVF [in vitro fertilization] controversy in Alabama, where there was some breaking news over last night. When we left off last week, the Alabama Legislature was trying to come up with legislation that would grant immunity to fertility clinics or their staff for “damaging or killing fertilized embryos,” without overtly overruling the state Supreme Court decision from February that those embryos are, “extrauterine children.” Alice, how’s that all going?

Ollstein: Well, it was very interesting to see a bunch of anti-abortion groups come out against the bill that Alabama, mostly Republicans, put together and passed and the Republican governor signed it into law. The groups were asking her to veto it; they didn’t want that kind of immunity for discarding or destroying embryos. Now what we will see is if there’s going to be a lawsuit that lands this new law right back in front of the same state Supreme Court that just opened this whole Pandora’s box in the first place, that’s very possible. That’s one thing I’m watching. I guess we should also watch for other states to take up this issue. A lot of states have fetal personhood language, either in their constitutions or in statute or something, so really any of those states could become the next Alabama. All it would take is someone to bring a court challenge and try to get a similar ruling.

Rovner: I was amused though that the [Alabama] Statehouse passed the immunity law yesterday, Wednesday during the day. But the Senate passed it later in the evening and the governor signed it. I guess she didn’t want to let it hang there while these big national anti-abortion groups were asking her to veto it. So by the time I woke up this morning, it was already law.

Ollstein: It’s just been really interesting, because the anti-abortion groups say they support IVF, but they came out against the Democrats’ federal bill that would provide federal protections. They came out against nonbinding House resolutions that Republicans put forward saying they support IVF, and they came out against this Alabama fix. So it’s unclear what form of IVF, if any, they do support.

Rovner: Meanwhile, in Kentucky, the state Senate has overwhelmingly passed a bill that would permit a parent to seek child support retroactively to cover pregnancy expenses up until the child reaches age 1. So you have until the child turns 1 to sue for child support. Now, this isn’t technically a “personhood” bill, and it’s legit that there are expenses associated with becoming a parent even before a baby is born, but it’s skating right up to the edge of that whole personhood thing.

It brings me to my extra credit for this week, which I’m going to do early. It’s a story from NPR called, “How States Giving Rights to Fetuses Could Set Up a National Case on Abortion,” by Regan McCarthy of member station WFSU in Tallahassee. In light of Florida’s tabling of a vote on its personhood bill in the wake of the Alabama ruling last week, the story poses a question I hadn’t really thought about in the context of the personhood debate, whether some of these partway recognition laws, not just the one in Kentucky, but there was one in Georgia last year, giving tax deductions for children who are not yet born as long as you could determine a heartbeat in the second half of the year, because obviously in the first half of the year the child would’ve been born.

Whether those are part of a very long game that will give courts the ability to put them all together at some point and declare not just embryos but zygotes children. Is this in some ways the same playbook that anti-abortion forces use to get Roe [v. Wade] overturned? That was a very, very long game and at least this story speculates that that might be what they’re doing now with personhood.

Ollstein: Some anti-abortion groups are very open that it is what they want to do. They have been seeding the idea in amicus briefs and state policies. They’ve been trying to tuck personhood language into all of these things to eventually prompt such a ruling, ideally from the Supreme Court and, in their view. So whether that moves forward remains to be seen, but it’s certainly the next goal. One of many next goals on the horizon.

Rovner: Yes, one of many. All right, well moving on. Last week I called the cyberattack on Change Healthcare, a subsidiary of UnitedHealth Group, the biggest under-covered story in health care. Well, it is not under-covered anymore. Two weeks later, thousands of hospitals, pharmacies, and doctor practices still can’t get their claims paid. It seems that someone, though it’s not entirely clear who, paid the hackers $22 million in ransom. But last time I checked the systems were still not fully up. I saw a letter this morning from the Medicaid directors worrying about Medicaid programs getting claims fulfilled. How big a wake-up call has this been for the health industry, Sarah? This is a bigger deal than anybody expected.

Karlin-Smith: There’s certainly been cyberattacks on parts of the health system before in hospitals. I think the breadth of this, because it’s UnitedHealth [Group], is really significant. Particularly, because it seems like some health systems were concerned that the broader United network of companies and systems would get impacted, so they sort of disconnected from things that weren’t directly changed health care, and that ended up having broader ramifications. It’s one consequence of United being such a big monolith.

Then the potential that United paid a ransom here, which is not 100% clear what happened, is very worrisome. Again, because there’s this sense that, that will then increase the — first, you’re paying the people that then might go back and do this, so you’re giving them more money to hack. But also again, it sets up a precedent, that you can hack health systems and they will pay you. Because it is so dangerous, particularly when you start to get involved in attacking the actual systems that provide people care. So much, if you’ve been in a hospital lately or so forth, is run on computer systems and devices, so it is incredibly disruptive, but you don’t want to incentivize hackers to be attacking that.

Rovner: I certainly learned through this how big Change Healthcare, which I had never heard of before this hack and I suspect most people even who do health policy had never heard of before this attack, how embedded they are in so much of the health care system. These hackers knew enough to go after this particular system that affected so much in basically one hack. I’m imagining as this goes forward, for those who didn’t listen to last week’s podcast, we also talked about the Justice Department’s new investigation into the size of UnitedHealth [Group], an antitrust investigation for… It was obviously not prompted by this, it was prompted by something else, but I think a lot of people are thinking about, how big should we let one piece of the health care system get in light of all these cyberattacks?

All right, well we’ll obviously come back to this issue, too, as it resolves, one would hope. That is the news for this week. Now we will play my interview with White House domestic policy adviser Neera Tanden, and then we will come back with our extra credits.

I am so pleased to welcome to the podcast Neera Tanden, domestic policy adviser to President Biden, and director of the White House Domestic Policy Council. For those of you who don’t already know her, Neera has spent most of the last two decades making health policy here in Washington, having worked on health issues for Hillary Clinton, President Barack Obama, and now President Joe Biden. Neera, thank you so much for joining us.

Neera Tanden: It’s really great to be with you, Julie.

Rovner: As we tape this, the State of the Union is still a few hours away and I know there’s stuff you can’t talk about yet. But in general, health care has been a top-of-mind issue for the Biden administration, and I assume it will continue to be. First, remind us of some of the highlights of the president’s term so far on health care.

Tanden: It’s a top concern for the president. It’s a top issue for us, but that’s also because it’s really a top issue for voters. We know voters have had significant concerns about access, but also about costs. That is why this administration has really done more on costs than any administration. This is my third, as you noted, so I’m really proud of all the work we’ve done on prescription drugs, on lowering costs of health care in the exchanges, on really trying to think through the cost burden for families when it comes to health care.

When we talk about prescription drugs, it’s a wide-ranging agenda, there are things or policies that people have talked about for decades, like Medicare negotiating drug prices, that this president is the first president to truly deliver on, which he will talk about in the State of the Union. But we’ve also innovated in different policies through the Inflation Reduction Act, the inflation rebates, which ensure that drug companies don’t raise the price of drugs faster than inflation. When they do, they pay a rebate both to Medicare but also ultimately to consumers. Those our high-impact policies that will really take a comprehensive approach on lowering prices.

Rovner: Yet for all the president has accomplished, and people who listen to the podcast regularly will know that it has been way more than was expected given the general polarization around Washington right now. Why does the president seem to get so little credit for getting done more things than a lot of his predecessors were able to do in two terms?

Tanden: Well, I think people do recognize the importance of prescription drug coverage. And health care as an issue that the president — it’s not my place to talk about politics, but he does have significant advantages on issues like health care. That I think, is because we’ve demonstrated tangible results. People understand what $35 insulin means. What I really want to point to in the Medicare negotiation process is, Sept. 1, Medicare will likely have a list of drugs which are significantly lower costs, that process is underway. But my expectation, you know I’m not part of it, that’s being negotiated by CMS [Centers for Medicare & Medicaid Services] and HHS, but we expect to have a list of 10 drugs that are high-cost items for seniors in which they’ll see a price that is lower than what they pay now. That’s another way in which, like $35 insulin, we’ll have tangible proof points of what this administration will be delivering for families.

Rovner: There’s now a record number of people who have health insurance under the Affordable Care Act, which I remember you also worked on. But in surveys, as you noted, voters now say they’re less worried about coverage and more worried about not being able to pay their medical bills even if they have insurance. I know a lot of what you’re doing on the drug side is limited to Medicare. Now, do you expect you’re going to be able to expand that to everybody else?

Tanden: First and foremost, our drug prices will be public, as you know. And as you know, prices in Medicare have been able to influence other elements of the health care system. That is really an important part of this. Which is that again, those prices will be public and our hope is that the private sector adopts those prices, because they’re ones that are negotiated. We expect this to affect, not just seniors, but families throughout the country.

There are additional actions we’ll be taking on Medicare drug negotiation. That will be a significant portion of the president’s remarks on health care, not just what we’ve been able to do in Medicare drug negotiation, but how we can really build on that and really ensure that we are dramatically reducing drug costs throughout the system. I look forward to hearing the president on that topic.

Rovner: I know we’re also going to get the budget next week. Are there any other big health issues that will be a priority this year?

Tanden: The president will have a range of policies on issues like access to sickle cell therapies, ensuring affordable generic drugs are accessible to everybody, ensuring that we are building on the Affordable Care Act gains. You mentioned this, but I just really do want to step back and talk about access under the Affordable Care Act. Because I think if people started off at the beginning of this administration and said the ACA marketplaces close to double, people would’ve been shocked. You know this well, a lot of people thought the exchanges were maximizing their potential. There are a lot of people who may not be interested in that, but the president had, in working with Congress, made the exchanges more affordable.

We’ve seen record adoption: 21 million people covered through the ACA exchanges today, when it was 12 million when we started. That’s 9 million more people who have the security of affordable health care coverage. I think it’s a really important point, which is, why are people signing up? Because it is a lot more affordable? Most people can get a very affordable plan. People are saving on average $800, and that affordability is crucial. Of course we have to do more work to reduce costs throughout the health care system. But it’s an important reminder that when you lower drug costs, you also have the ability to lower premiums and it’s another way in which we can drive health care costs down. I would be genuinely honest with you, which is, I did not think we would be able to do all of these things at the beginning of the administration. The president has been laser-focused on delivering, and as you know from your work on the ACA, he did think it was a big deal.

Rovner: I have that on a T-shirt.

Tanden: A lot of people have talked about different things, but he has been really focused on strengthening the ACA. He’ll talk about how we need to strengthen it in the future, and how that is another choice that we face this year, whether we’re going to entertain repealing the ACA or build on it and ensure that the millions of people who are using the ACA have the security to know that it’s there for them into the future. Not just on access, but that also means protections for preexisting conditions, ensuring women can no longer be discriminated against, the lifetime annual limits. There’s just a variety of ways that ACA has transformed the health care system to be much more focused on consumers.

Rovner: Last question. Obviously reproductive health, big, big issue this year. IVF in particular has been in the news these past couple of weeks, thanks to the Alabama Supreme Court. Is there anything that President Biden can do using his own executive power to protect access to reproductive health technology? And will we hear him at some point address this whole personhood movement that we’re starting to see bubble back up?

Tanden: I think the president will be very forceful on reproductive rights and will discuss the whole set of freedoms that are at stake and reproductive rights and our core freedom at stake this year. You and I both know that attacks on IVF are actually just the effectuation of the attacks on Roe. What animates the attacks on Roe, would ultimately affect IVF. I felt like I was a voice in the wilderness for the last couple of decades, where people were saying … They’re just really focused on Roe v. Wade. It won’t have any impact on IVF or [indecipherable] they’re just scare tactics when you talk about IVF.

Obviously the ideological underpinnings of attacks on Roe ultimately mean that you would have to take on IVF, which is exactly what women are saying. I think the president will speak forcefully to the attacks on women’s dignity that women are seeing throughout this country, and how this ideological battle has translated to misery and pain for millions of women. Misery and pain for their families. And has really reached the point where women who are desperate to have a family are having their reproductive rights restricted because of the ideological views of a minority of the country. That is a huge issue for women, a huge issue for the country, and exactly why he’ll talk about moving forward on freedoms and not moving us back, sometimes decades, on freedom.

Rovner: Well, Neera Tanden, you have a lot to keep you busy. I hope we can call on you again.

Tanden: There’s few people who know the health care system as well as Julie Rovner, so it’s just a pleasure to be with 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. I already did mine. Sandhya, why don’t you go next?

Raman: My extra credit this week is called “My Son Is Not There Anymore: How Young People With Psychosis Are Falling Through the Cracks,” and it’s by Órla Ryan for The Journal. This was a really interesting story about schizophrenia in Ireland and just how the earlier someone’s symptoms are treated the better the outcome. But a lot of children and minors with psychosis and schizophrenia struggle to get access to the care they need and just fall through the cracks of being transferred from one system to another, especially if they’re also dealing with disabilities. If some of these symptoms are treated before puberty, the severity is likely to go down a lot and they’re much less likely to experience psychosis. She takes a really interesting look at a specific case and some of the consequences there.

Rovner: I feel like we don’t look enough at what other countries health systems are doing because we could all learn from each other. Alice, why don’t you go next?

Ollstein: I have a piece by KFF Health News called “Why Even Public Health Experts Have Limited Insight Into Stopping Gun Violence in America.” It’s looking at the toll taken by the long-standing restrictions on federal funding for research into gun violence, investigating it as a public health issue. Only recently this has started to erode at the federal level and some funding has been approved for this research, but it is so small compared to the death toll of gun violence. This article sort of argues that lacking that data for so many years is why a lot of the quote-unquote “solutions” that places have tried to implement to prevent gun violence, just don’t work. They haven’t worked, they haven’t stopped these mass shootings, which continue to happen. So, arguing that, if we had better data on why things happen and how to make it less lethal, and safe, in various spaces, that we could implement some things that actually work.

Rovner: Yeah, we didn’t have the research just as this problem was exploding and now we are paying the price. Sarah.

Karlin-Smith: I looked at the first in a Stat News series by Lev Facher, “The War on Recovery: How the U.S. Is Sabotaging Its Best Tools to Prevent Deaths in the Opioid Epidemic.” It looks at why the U.S. has had access to cheap effective medicines that help reduce the risk of overdose and death for people that are struggling with opioid-use disorder haven’t actually been able, in most cases, to get access to these drugs, methadone and buprenorphine.

The reasons range from even people not being allowed to take the drugs when they’re in prison, to not being able to hold certain jobs if you’re taking these prescription medications, to Narcotics Anonymous essentially banning people from coming to those meetings if they use these drugs, to doctors not being willing or open to prescribing them. Then of course, there’s what always seems to come up these days, the private equity angle. Which is that methadone clinics are becoming increasingly owned by private equity and they’ve actually pushed back on and lobbied against policies that would make it easier for people to get methadone treatment. Because one big barrier to methadone treatment is, right now you largely have to go every day to a clinic to get your medicine, which it can be difficult to incorporate into your life if you need to hold a job and take care of kids and so forth.

It’s just a really fascinating dive into why we have the tools to make what is really a terrible crisis that kills so many people much, much better in the U.S. but we’re just not using them. Speaking of how other countries handle it, the piece goes a little bit into how other countries have had more success in actually being open to and using these tools and the differences between them and the U.S.

Rovner: Yeah, it’s a really good story. 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 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. . Sarah, where are you these days?

Karlin-Smith: Trying mostly to be on Blue Sky, but on X, Twitter a little bit at either @SarahKarlin or @sarahkarlin-smith.

Rovner: Alice.

Ollstein: @alicemiranda on Blue Sky, and @AliceOllstein on X.

Rovner: Sandhya.

Raman: @SandhyaWrites on X and on Blue Sky.

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

Credits

Francis Ying
Audio producer

Emmarie Huetteman
Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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

USE OUR CONTENT

This story can be republished for free (details).

Pharmaceutical companies that manufacture insulin made headlines last year when they voluntarily agreed to provide discount cards that lower the monthly cost of insulin for many people to $35. 

But getting your hands on this card — and persuading a pharmacist to accept it — can be a hassle.

In this episode of “An Arm and a Leg,” producer Emily Pisacreta speaks with “insulin activists” and pharmaceutical experts to find out what this change in prices means for people with diabetes and why the fight for affordable insulin isn’t over yet.

Dan Weissmann

@danweissmann

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

Credits

Emily Pisacreta
Producer

Adam Raymonda
Audio Wizard

Ellen Weiss
Editor

Click to open the Transcript

Transcript: Wait, Is Insulin Cheaper Now?

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there. Right after the holidays, I got an email from a listener named Brianna.It started, “Happy new year Dan! I was just reading the news about the price of insulin going down to $35! Is that for everyone?”

And I was like, Huh. I had a sense that there was some news about the price of insulin, but 35 dollars a month for everyone? That sounded like a BIG reduction. And big news.I googled the latest stories, and I was… not totally sure what I was seeing.

I was definitely seeing some new stories about people paying 35 bucks from here on out. And there seemed to be some federal law involved, and politicians were patting themselves on the back. But it just wasn’t totally clear: Was insulin now 35 dollars for everyone? Did the outrageous price of insulin get solved while I wasn’t looking?

And I mean, I’ve kinda been looking. We’ve done a couple of episodes about the price of insulin already — because insulin is iconic. It represents the wild cost of prescription drugs in this country. More than 8 million Americans take insulin to treat their diabetes – and for some, going without it could actually kill you.

And its price got jacked up so much — huge multiples over like ten years — — that one in four of those people who couldn’t go without… took to rationing: Seeing how much they could go without, short of actually dying.

So I asked our senior producer Emily Pisacreta to take the case.

Emily: I feel more like the senior insulin correspondent, which is fine with me as the resident type 1 diabetic! And a lot has happened since the last time we talked about insulin on this show. We really do need an update.

Dan: This is an “Arm and a Leg”, a show about why healthcare costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann, I’m a reporter and I like a challenge. So our job here is to take one of the most enraging, terrifying, depressing parts of American life, and bring you something entertaining, empowering and useful.

Today we have a question: what’s going on with insulin? Is it $35 now?

Emily: Well, there have been some BIG improvements — bigger than I thought when I started reporting. A lot of people can get their monthly supply of insulin for just $35. But it is oversimplified to say it just costs $35 now. And the people who have been fighting to lower the price of insulin over the past decade? They’re still very pissed. So let me walk you through what changed, what led to those changes, and what’s still unresolved.

Dan: OK!

Emily: For years now, there’s been a giant push from people with diabetes to get the federal government to do something about the high cost of insulin. In 2022, finally something came through. I’m talking about a provision in Inflation Reduction Act.

Dan: Yes– I remember this– the Inflation Reduction Act was a big infrastructure bill that included, like renewable energy subsidies, and– honestly, this is the reason that I remember the bill, because we did an episode about this part–  letting medicare negotiate some drug prices?

Emily: Exactly. It said people on Medicare would be able to get a month’s supply of insulin for no more than $35 out of pocket. But of course that left a big gaping hole. BECAUSE that’s cool for people on Medicare, but what about the rest of us? And the pharma companies were feeling the heat. Here’s President Biden in his State of the Union last year:

President Biden: Big pharma has been unfairly charging people hundreds of dollars, four to $500 a month making record profits. Not anymore. Not anymore.

Emily: By the way, those pharma companies? There’s three of them who make insulin.

That’s the American company Eli Lilly, the Danish company Novo Nordisk, and the French company Sanofi. OK so: not long after  Joe Biden talked about their record profits, the insulin makers were back in the news. …

Eli Lilly was the first to announce they were going to slash prices on several of their most popular insulins, and limit out of pocket spending to $35 a month.

Fox News: This is a big story.

 Next, Novo Nordisk and Sanofi made similar announcements. 

CNN: Millions of Americans are affected by this major news this morning for millions of people suffering from diabetes and high prescription drug costs.

Basically, the insulin manufacturers all said hey, you’re not covered by this Medicare thing? We’re going to bring your copay down to $35 ourselves. So if you have commercial insurance Print out this card, take it to the pharmacy, and your copay will be no more than $35 for a month’s supply of insulin.

Dan: And what if you’re uninsured?

Emily: Well, they have a card for that, too.

Dan: OK so what I’m hearing is you need a card.

DAN: Yes. How do you get one?

Emily: The insulin makers set special phone numbers you can call. Or you can visit their websites, fill out a little form, and download the card.

Dan: Sounds simple, unless I’m missing something?

Emily: In all honesty, I had no problem with those steps. But I wouldn’t assume that’s the case for everyone. And I’m also not rationing insulin right now.

Zoe Witt: When you are rationing insulin, maybe you aren’t even fully rationing insulin yet, but you don’t know how you’re going to get Your next prescription, your next fill of insulin…You are in crisis. Like, you, you do not have the capability to sift through these websites. It’s very confusing. It’s very overwhelming.

Emily: This is someone who frequently speaks to people struggling to afford insulin.

Zoe Witt: my name is Zoe Witt. I work with Mutual Aid Diabetes.

Emily: Mutual Aid Diabetes. That’s an all volunteer group that has banded together to help diabetics get what they need, when they need it. They help people with cash and with free diabetes supplies, including insulin, no questions asked. That means Zoe knows the ins and outs of every obstacle to getting insulin.

Zoe Witt: Our healthcare system is like a whack a mole from hell.

Emily:  And Zoe reminds me: if you’re not taking enough insulin, you probably feel awful. Maybe not even thinking straight. And it can affect your eyes, making it hard to read.

Zoe Witt: It just is unmanageable

Emily: Zoe says they talk with people all the time who are too stressed out or too debilitated to download these cards and use them.  Diabetes folks walk people through the process. And once someone has the card… Mutual Aid Diabetes gives people the 35 bucks, too, if they say they need it. Because $35 can be a barrier for a lot of people. And it’s actually $70 sometimes if you use 2 types of insulin at once, which lots of people do… myself included.

Dan: Wow. OK. But then once people have the cards they typically have no problem?

Emily: Well, your pharmacist has to know what they’re doing, too. So sometimes it means a patient having to educate their pharmacist– or even bring the doctor in to help troubleshoot — which is no picnic. And people with diabetes are always having to deal with insurance roadblocks at the pharmacy, so I don’t want to make anything sound simpler than it is. 

Dan: It’s like a whack a mole from hell!

Emily: Exactly! And the cards don’t solve everything. Especially this: if you have insurance, these cards only apply to the insulin your insurance plan already covers. If you normally need a prior authorization to get the right insulin for you… that is still the case.

Dan: Right. Okay.  like prior authorization is this roadblock to getting all kinds of treatment, that you and your doctor agree that you should have, and your insurance company can say, we disagree. We’re s not authorizing this. And then you’re stuck. 

Emily: Right. 

Dan:But in terms of what the pharma companies. can do to kind of offer you a deal. They’re basically doing it. Is that right? 

Emily: I think that’s fair to say. 

Dan: That’s super interesting. All right. So it’s not solved, but this is a big step forward. And what’s not solved is: some people are still on the hook for the list price for insulin — the price without any discounts or insurance or whatever. But you found big improvements there too, right? 

Emily: Yes! When the companies announced all these discount cards, they announced a whole other big change, too. Slashing the list prices of a bunch of different insulins by up 75%. So a vial that once was north of $300 is now being listed at around $70.

Dan: OK, that sounds like a big improvement.

Emily: It’s a big, big deal. Actual price reductions are what diabetes advocates have been demanding all along. And… while these are still the highest prices in the world for these same insulins, to see them drop from triple to double digits, it’s wild.

Dan: I sense that there’s a “but” here.

Emily: Well, the Big Three didn’t lower the price of every type of insulin, only ones that have been around since the 1990s or early 2000s. Newer insulins that work faster or last longer are not included here.

Dan: And I’m guessing not all insulins work the same way.

Emily: Right. Some people can switch between types or brands of insulin easily. For other people, there can be allergies or one works better with their body with another kind. It’s complicated. It’s medicine! AND… there have been some issues with pharmacies actually stocking lower list price insulin. That is a whole ‘nother saga… an episode for another day. But the important thing is… a bunch of insulin is a lot cheaper now.

Dan: Wow. Emily, you said right at the top: The changes here are bigger and better than you realized before you started reporting. 

Emily: Yes but there’s still a lot more to say. 

Right. After the break, we’ll’ hear from you about why these changes happened NOW. And what it means for people with diabetes and really all of us…

[midroll]

So. We have seen some big changes in the last year — including DRUG COMPANIES expanding their discount programs and lowering the sticker prices on insulin, dramatically. Why now? I’m guessing this wasn’t because they had a big change of heart.

Emily: I can’t speak to what’s in pharma’s hearts. But I did talk to someone who knows a lot about pharma’s brain.

Ed Silverman: my name is Ed Silverman, and I work at Stat News, a health and life sciences website,

Emily: I’m a big fan of Stat News

Dan: Me too, man! Their reporting is great.

Emily:  And Ed Silverman. He’s been covering the pharmaceutical industry for almost 30 years. He thinks activism from people with diabetes over the years created political pressure that played a big role in the decision to slash prices. But there was also something kind of hidden at work.

Ed Silverman: It’s not altruism, here was a real mechanism, government mechanism in place that helped change the equation and therefore the thinking back at the companies.

Dan: OK… what is he talking about?

Emily: So, Dan: do you remember the stimulus bill, the American Rescue Plan?

Dan: I’m starting to feel like this episode is a quiz on recent-ish legislation. And I think I’m gonna do pretty well here:.The American Rescue Plan was a trillion dollar stimulus that Joe Biden got passed right after he got into office– am I right?

Emily: OK, hotshot. Do you remember how in part 8 section 9816 they sunsetted the limit on the maximum rebate for single source drugs and innovator multiple source drugs?

Dan:  Um, busted. No. 

Emily: Ok so here’s the deal: it’s obviously kinda wonky so I’ll simplify– in that little section Congress made a tweak to Medicaid, basically raising penalties on drug-makers for jacking up prices too far, too fast. So if you’re a pharma company who has raised the price of a drug by a lot very quickly, which is true of insulin, and a lot of people on Medicaid use your drug, which is also true of insulin, then you have to pay a big penalty. In the case of insulin, that penalty would be more than you’d make selling the insulin to Medicaid. A LOT more: So, unless you bring the price back down, you’re going to owe Medicaid a lot of moolah. And those penalties were set to kick in January 1st 2024.

Dan: So you’re telling me: Part of what the pharma companies did here came right out of a small part of a giant federal law from 2021.

Emily: Yep. And there’s another big wheel turning in the background here. Novo Nordisk and Eli Lilly, two companies who really got their start by selling insulin, now make other diabetes drugs — drugs that are now increasingly used for weight loss. And it’s a bonanza.

GMA: It is literally the hottest drug in the country right now.

Fox News: all people are talking about these days is Ozempic, wegovy. Oh my gosh, this person lost 20 pounds. This person lost 50 pounds.

Ozempic Ad: [Jingle:] “Oh, Oh, Oh, Ozempic![Announcer:] Once weekly Ozempic is helping many people with type 2 diabetes like James lower their blood sugar.

Emily: Drugs like Ozempic, Wegovy, Mounjaro. They’ve been in super high demand. And there’s been a ton of hype about their various potential health benefits. For weight loss, for heart health. Scientists are even interested in whether it can help people with substance use disorders. Meanwhile, for Eli Lilly and Novo Nordisk, the returns on these drugs dwarf anything else they’re selling. Novo Nordisk even became the biggest company in Europe – for like a minute… but still.

Dan: OK, this is interesting, but what does it have to do with the price of insulin?

Emily: I’d wondered… maybe these companies can just better afford to buy some political peace by lowering insulin prices, because they are making so much bank on these new drugs, ? Ed Silverman had a take on that.

Ed Silverman: It makes perfect sense that these cash cows, these medicines that are used for diabetes and, weight loss are going to become increasingly important to their bottom line more than other medicines

Emily: More than insulin. And they’re selling so much so fast, they can hardly keep up with demand. Which could end up affecting people who need insulin.

Dan: Wait, how?

Emily:  Look, for example, in November, Novo Nordisk said they were investing 3 and half billion dollars into ramping up production of injection pens for  Wegovy, one of their top drugs in this category. Less than a week later, Novo announced they would be phasing out one of their insulin products  from the US market – an insulin called Levemir. It’s one of the insulins whose prices they just dropped. And… coincidence… Levemir also comes in a pen.

Dan: So Novo Nordisk is phasing out an insulin pen so they can make more Wegovy pens?

Emily: Well, we don’t know that for sure. But Novo Nordisk did tell me that “manufacturing constraints” were part of why they’re dumping Levimir. They said it was one of several reasons and also wrote: “We made this decision after careful consideration and are confident that given the advanced notice, U.S. patients will have access to alternative treatments and can transition to other options.    

Dan: Huh. OK.

Emily: But even if pulling this insulin Levemir off the market had nothing to do with their trouble meeting the demand for their big blockbuster drug… it brings to mind an important question about all the changes we talked about today — whether it’s the copay savings or the lowered list prices. Here’s Ed Silverman.

Ed Silverman there’s no guarantee that the companies will keep these in place. Maybe after time, some of the attention on insulin is diverted and maybe eighteen months from now, one company might quietly roll back some of the Benefits, if you want to use that word, there’s nothing requiring them to maintain the steps they’ve taken.

Emily: I asked all three insulin makers about this. None of them promised there would never be any backsies. Lilly wrote back “Lilly is committed to ensuring all patients can access any Lilly medicine they need” — and touted their efforts to date. Similarly, Sanofi wrote “We continually review our affordability offerings to support our aim that no one should struggle to pay for their insulin. Novo Nordisk’s response was “Novo Nordisk increases the price of some of our medicines each year, in response to changes in the healthcare system, market conditions, and the impact of inflation.” 

Dan: Yeah, that especially does not sound like a pinky-swear, no-backsies kind of response.   

Emily: AND  that’s not much comfort for insulin activists. Folks like Shaina Kasper, who works for T1International. They’re a group that’s been at the forefront of this fight for years.  I Asked her…

Emily-on-tape: So is this issue of high insulin prices just resolved now?

Shaina Kasper: No, it hasn’t been. It’s been really frustrating…

Emily Shaina and others are worried that the announcements from the manufacturers about savings cards and voluntary list price reductions will take the pressure off the government to do something more sweeping. Because for now…

Shaina: The manufacturers really hold all of the power here And if patients are counting on these programs to literally be able to survive, that has life and death consequences

Dan: This question about who holds the power, it reminds me of a story we did a few months ago… the one about how the writer John Green led a kind of online crusade targeting the drug-maker Johnson & Johnson. And how, even though the pressure campaign worked — J & J ended up allowing lower-priced versions of an important tuberculosis drug — activists who worked on the issue were like: It’s a problem that Johnson & Johnson has the power to say yes or no here..

Emily: Exactly. That which pharma giveth, pharma can taketh. At least the way things are set up now. Now I should say, all three companies told me they plan to continue their affordability offerings. But if insulin continues to be the poster child for high drug prices, prices virtually everyone in America agrees are too high…it does raise the question: are voluntary programs from pharmaceutical companies the solution we want? To Zoe from Mutual Aid Diabetes, the answer is no. They find these manufacturer savings cards kind of a bitter pill… no pun intended.

Zoe Witt: there’s certainly no justice in these programs, 

Emily: And zoe for one would say that justice is overdue. 

Zoe Witt: These companies have price gouged us. for years, making obscene amounts of money. Then, presumably, as, we’re often told is the justification for these ridiculous prices, they did research and development for more diabetes drugs, which are Ozempic, Monjoro, etc. And now, these companies, for, the next 15 years, are set to make, billions and billions of dollars, on these drugs,

Emily: I asked the big three insulin manufacturers about what Zoe said – about how angry folks like them are over the cost of insulin. Novo Nordisk said “we continually review and revise our offerings as well as work with diverse stakeholders to create solutions for differing patient needs. ”  And Sanofi and Lily both said something very similar.

Emily: So… in the end– or at least for now– here’s the answer to our listener’s question…. There are more avenues than ever to get a month’s supply of insulin for $35. Great. It may be a lot easier to avoid rationing your insulin now than it was a couple years ago. That’s also really great. But people with diabetes do not think this fight is over.

Dan: So what DO they want?

Emily: Some people still want the federal government to just put a cap on what people pay for insulin, like by law.. Others are working to build alternatives to the existing pharmaceutical industry, like California’s CalRx program.

Dan: Cal Rx… now you’re calling back our story from the last time we talked about insulin.

Emily: Yep, Cal Rx is the state of California’s attempt to enter the insulin market, to introduce some low priced generics and sell them essentially at cost. Other states are joining in. Even if some of these specific plans fall apart — even if California somehow can’t get its government-sponsored insulin to market, even if Pharma rolls back some of the discounts…the past few years have been enormous for people with diabetes. Mostly because they’ve found each other.

Zoe Witt: I was rationing insulin in 2018, I didn’t even know that there was a term for it. I didn’t know other people were doing it. I know a lot of people died that year. And there were multiple occasions where I, in retrospect, definitely almost died. And the one good thing that has, that has happened between now and then is that people have been talking about it and People are now more comfortable telling others that they’re struggling, that they can’t get their insulin.

Emily: Connecting with Mutual Aid Diabetes or other networks to get or give help.

Zoe Witt: We’re all keeping each other alive, like to me, that’s the number one thing that has changed.

Emily: I think that’s a huge lesson here, and a takeaway that’s not new on this show. Keeping each other alive — or even just keeping each other from getting bankrupted by the medical system — is up to us. And while a mutual aid group modeled exactly like Mutual Aid Diabetes may not work for every disease or every drug, Zoe says they’re more than willing to talk to anyone who might be interested in trying.

Zoe Witt: I mean, we’ve even had people ask, like, is there like a mutual aid asthma or something like for inhalers? 

Emily: Their advice? 

Zoe Witt: I think that, you know, to start,  you would want, like,  probably at least, like, five to ten ”ride-or dies,” like, people that are really willing to, like, go the extra mile, 

Dan: Five to ten– that just does not sound like that many! (I mean, I think.) One thing I’m taking away is:  This is a lot of activism over a long time, that eventually had a big effect. Another thing I’m taking away here? Sneaky policy changes — like lifting the Medicaid rebate cap — can make a huge difference. God bless whatever nerds are writing the next little bit of law to sneak into a giant bill, like a hacker with a virus.

Emily: Totally. OK. I gotta take a shot, and eat my lunch.

Dan: Go for it. We’ll be back with a new episode in a few weeks. Till then, take care of yourself.

This episode of an arm and a leg was produced by Emily Pisacreta and me, Dan Weissman and edited by Ellen Weiss. 

Adam Raymonda is our audio wizard. Our music is by Dave Weiner and blue dot sessions. 

Gabrielle Healy is our managing editor for audience. She edits the first aid kit newsletter. 

Bea Bosco is our consulting director of operations. Sarah Ballama is our operations manager. 

And Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in depth journalism about healthcare in America and a core program at KFF, an independent source of health policy research, polling and journalism. 

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

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

Finally, thanks to everybody who supports this show financially– you can join in any time at arm and a leg show dot com, slash, support — and thanks for listening.

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

To keep in touch with “An Arm and a Leg,” subscribe to the newsletter. You can also follow the show on Facebook and X, formerly known as Twitter. And if you’ve got stories to tell about the health care system, the producers would love to hear from you.

To hear all KFF Health News podcasts, click here.

And subscribe to “An Arm and a Leg” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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

USE OUR CONTENT

This story can be republished for free (details).

Hired someone new and exciting? Promoted a rising star? Finally solved that hard-to-fill spot? Share the news with us, and we’ll share it with others. That’s right. Send us your changes, and we’ll find a home for them. Don’t be shy. Everyone wants to know who is coming and going.

And here is our regular feature in which we highlight a different person each week. This time around, we note that KaliVir Immunotherapeutics hired James Burke as chief medical officer. Previously, he worked at CG Oncology, where he was also chief medical officer.

But all work and no play can make for a dull chief medical officer.

Continue to STAT+ to read the full story…

Want to stay on top of the science and politics driving biotech today? Sign up to get our biotech newsletter in your inbox.

Hello! Today, we discuss how the FDA is holding firm in how it handles non-compliant trial sponsors and investigators, how PhRMA is rebuilding its ranks, and offer up a fabulous podcast.

The need-to-know this morning

• Advisers to the European Medicines Agency recommended the approval of Qalsody, a treatment for ALS from Biogen.

What do CEOs owe the world?

Did Humira break the system? And can you CRISPR a fetus? We cover all that and more this week on “The Readout LOUD,” STAT’s biotech podcast.

Continue to STAT+ to read the full story…

Gonzalez had previously said he would depart when AbbVie had a plan in place to move on from its best-selling drug, Humira, which is now facing competition from cheaper biosimilars.

He will be replaced by Chief Operating Officer Robert Michael, who, like Gonzalez, is a longtime AbbVie executive. Gonzalez, 70, will become executive chairman of the board of directors.

Gonzalez should be a sobering reminder to the drug industry’s critics of how resilient a CEO’s reputation can be. Because while he has been a subject of nearly constant criticism for AbbVie’s handling of Humira and the patents protecting it, investors are likely to remember him fondly.

Continue to STAT+ to read the full story…

Last year alone, David Mitchell paid $16,525 for 12 little bottles of Pomalyst, one of the pricey medications that treat his multiple myeloma, a blood cancer he was diagnosed with in 2010.

The drugs have kept his cancer at bay. But their rapidly increasing costs so infuriated Mitchell that he was inspired to create an advocacy movement.

Patients for Affordable Drugs, which he founded in 2016, was instrumental in getting drug price reforms into the 2022 Inflation Reduction Act. Those changes are kicking in now, and Mitchell, 73, is an early beneficiary.

In January, he plunked down $3,308 for a Pomalyst refill “and that’s it,” he said. Under the law, he has no further responsibility for his drug costs this year — a savings of more than $13,000.

The law caps out-of-pocket spending on brand-name drugs for Medicare beneficiaries at about $3,500 in 2024. The patient cap for all drugs drops to $2,000 next year.

“From a selfish perspective, I feel great about it,” he said. But the payment cap will be “truly life-changing” for hundreds of thousands of other Medicare patients, Mitchell said.

President Joe Biden’s battle against high drug prices is mostly embodied in the IRA, as the law is known — a grab bag of measures intended to give Medicare patients immediate relief and, in the long term, to impose government controls on what pharmaceutical companies charge for their products. The law represents the most significant overhaul for the U.S. drug marketplace in decades.

With Election Day on the horizon, the president is trying to make sure voters know who was responsible. This month, the White House began a campaign to get the word out to seniors.

“The days where Americans pay two to three times what they pay for prescription drugs in other countries are ending,” Biden said in a Feb. 1 statement.

KFF polling indicates Biden has work to do. Just a quarter of adults were aware that the IRA includes provisions on drug prices in July, nearly a year after the president signed it. He isn’t helped by the name of the law, the “Inflation Reduction Act,” which says nothing about health care or drug costs.

Biden’s own estimate of drug price inflation is quite conservative: U.S. patients sometimes pay more than 10 times as much for their drugs compared with people in other countries. The popular weight loss drug Wegovy lists for $936 a month in the U.S., for example — and $83 in France.

Additional sections of the law provide free vaccines and $35-a-month insulin and federal subsidies to patients earning up to 150% of the federal poverty level, and require drugmakers to pay the government rebates for medicines whose prices rise faster than inflation. But the most controversial provision enables Medicare to negotiate prices for certain expensive drugs that have been on the market for at least nine years. It’s key to Biden’s attempt to weaken the drug industry’s grip.

Responding to Pressure

The impact of Medicare’s bargaining over drug prices for privately insured Americans remains unclear. States have taken additional steps, such as cutting copays for insulin for the privately insured.

However, insurers are increasing premiums in response to their higher costs under the IRA. Monthly premiums on traditional Medicare drug plans jumped to $48 from $40 this year, on average.

On Feb. 1, the Centers for Medicare & Medicaid Services sent pharmaceutical makers opening bids for the first 10 expensive drugs it selected for negotiation. The companies are responding to the bids — while filing nine lawsuits that aim to kill the negotiations altogether, arguing that limiting their profits will strangle the pipeline of lifesaving drugs. A federal court in Texas dismissed one of the suits on Feb. 12, without taking up the substantive legal issue over constitutionality.

The nonpartisan Congressional Budget Office predicted the IRA’s drug pricing elements would save the federal government $237 billion over 10 years while reducing the number of drugs coming to market in that period by about two.

If the government prevails in the courts, new prices for those 10 drugs will be announced by September and take effect in 2026. The government will negotiate an additional 15 drugs for 2027, another 15 for 2028, and 20 more each year thereafter. CMS has been mum about the size of its offers, but AstraZeneca CEO Pascal Soriot on Feb. 8 called the opening bid for his company’s drug Farxiga (which earned $2.8 billion in U.S. sales in fiscal year 2023) “relatively encouraging.”

Related Biden administration efforts, as well as legislation with bipartisan support, could complement the Inflation Reduction Act’s swing at drug prices.

The House and Senate have passed bills that require greater transparency and less self-serving behavior by pharmacy benefit managers, the secretive intermediaries that decide which drugs go on patients’ formularies, the lists detailing which prescriptions are available to health plan enrollees. The Federal Trade Commission is investigating anti-competitive action by leading PBMs, as well as drug company patenting tricks that slow the entry of cheaper drugs to the market.

‘Sending a Message’

Months after drug companies began suing to stop price negotiations, the Biden administration released a framework describing when it could “march in” and essentially seize drugs created through research funded by the National Institutes of Health if they are unreasonably priced.

The timing of the march-in announcement “suggests that it’s about sending a message” to the drug industry, said Robin Feldman, who leads the Center for Innovation at the University of California Law-San Francisco. And so, in a way, does the Inflation Reduction Act itself, she said.

“I have always thought that the IRA would reverberate well beyond the unlucky 10 and others that get pulled into the net later,” Feldman said. “Companies are likely to try to moderate their behavior to stay out of negotiations. I think of all the things going on as attempts to corral the market into more reasonable pathways.”

The IRA issues did not appear to be top of mind to most executives and investors as they gathered to make deals at the annual J.P. Morgan Healthcare Conference in San Francisco last month.

“I think the industry is navigating its way beyond this,” said Matthew Price, chief operating officer of Promontory Therapeutics, a cancer drug startup, in an interview there. The drugs up for negotiation “look to be assets that were already nearing the end of their patent life. So maybe the impact on revenues is less than feared. There’s alarm around this, but it was probably inevitable that a negotiation mechanism of some kind would have to come in.”

Investors generally appear sanguine about the impact of the law. A recent S&P Global report suggests “healthy revenue growth through 2027” for the pharmaceutical industry.

Back in Washington, many of the changes await action by the courts and Congress and could be shelved depending on the results of the fall election.

The restructuring of Medicare Part D, which covers most retail prescription drugs, is already lowering costs for many Medicare patients who spent more than $3,500 a year on their Part D drugs. In 2020 that was about 1.3 million patients, 200,000 of whom spent $5,000 or more out-of-pocket, according to KFF research.

“That’s real savings,” said Tricia Neuman, executive director of KFF’s Medicare policy program, “and it’s targeted to people who are really sick.”

Although the drug industry is spending millions to fight the IRA, the Part D portion of the bill could end up boosting their sales. While it forces the industry to further discount the highest-grossing drugs, the bill makes it easier for Medicare patients to pick up their medicines because they’ll be able to afford them, said Stacie Dusetzina, a Vanderbilt University School of Medicine researcher. She was the lead author of a 2022 study showing that cancer patients who didn’t get income subsidies were about half as likely to fill prescriptions.

States and foundations that help patients pay for their drugs will save money, enabling them to procure more drugs for more patients, said Gina Upchurch, the executive director of Senior PharmAssist, a Durham, North Carolina-based drug assistance program, and a member of the Medicare Payment Advisory Commission. “This is good news for the drug companies,” she said.

Relief for Patients

Lynn Scarfuto, 73, a retired nurse who lives on a fixed income in upstate New York, spent $1,157 for drugs last year, while most of her share of the $205,000 annual cost for the leukemia drug Imbruvica was paid by a charity, the Patient Access Network Foundation. This year, through the IRA, she’ll pay nothing because the foundation’s first monthly Imbruvica payment covered her entire responsibility. Imbruvica, marketed jointly by AbbVie and Janssen, a subsidiary of Johnson & Johnson, is one of the 10 drugs subject to Medicare negotiations.

“For Medicare patients, the Inflation Reduction Act is a great, wonderful thing,” Scarfuto said. “I hope the negotiation continues as they have promised, adding more drugs every year.”

Mitchell, a PR specialist who had worked with such clients as the Campaign for Tobacco-Free Kids and pharmaceutical giant J&J, went to an emergency room with severe back pain in November 2010 and discovered he had a cancer that had broken a vertebra and five ribs and left holes in his pelvis, skull, and forearm bones. He responded well to surgery and treatment but was shocked at the price of his drugs.

His Patients for Affordable Drugs group has become a powerful voice in Washington, engaging tens of thousands of patients, including Scarfuto, to tell their stories and lobby legislatures. The work is supported in part by millions in grants from Arnold Ventures, a philanthropy that has supported health care policies like lower drug prices, access to contraception, and solutions to the opioid epidemic.

“What got the IRA over the finish line in part was angry people who said we want something done with this,” Mitchell said. “Our patients gave voice to that.”

Arnold Ventures has provided funding for KFF Health News.

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

USE OUR CONTENT

This story can be republished for free (details).