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.

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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.

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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. 

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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…

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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.

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The Host

Julie Rovner
KFF Health News

@jrovner

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

A federal judge in Texas has turned back the first challenge to the nascent Medicare prescription-drug negotiation program. But the case turned on a technicality, and drugmakers have many more lawsuits in the pipeline.

Meanwhile, Congress is approaching yet another funding deadline, and doctors hope the next funding bill will cancel the Medicare pay cut that took effect in January.

This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Rachel Cohrs of Stat, and Lauren Weber of The Washington Post.

Panelists

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories.

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories.

Lauren Weber
The Washington Post

@LaurenWeberHP

Read Lauren's stories.

Among the takeaways from this week’s episode:

• Rep. Cathy McMorris Rodgers (R-Wash.), chair of the powerful House Energy and Commerce Committee, announced she would retire at the end of the congressional session, setting off a scramble to chair a panel with significant oversight of Medicare, Medicaid, and the U.S. Public Health Service. McMorris Rodgers is one of several Republicans with significant health expertise to announce their departures.
• As Congress’ next spending bill deadline approaches, lobbyists for hospitals are feverishly trying to prevent a Medicare provision on “site-neutral” payments from being attached.
• In abortion news, anti-abortion groups are joining the call for states to better outline when life and health exceptions to abortion bans can be legally permissible.
• Senate Finance Chairman Ron Wyden (D-Ore.) is asking the Federal Trade Commission and the Securities and Exchange Commission to investigate a company that collected location data from patients at 600 Planned Parenthood sites and sold it to anti-abortion groups.
• And in “This Week in Health Misinformation”: Lawmakers in Wyoming and Montana float bills to let people avoid getting blood transfusions from donors who have been vaccinated against covid-19.

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

Julie Rovner: Stateline’s “Government Can Erase Your Medical Debt for Pennies on the Dollar — And Some Are,” by Anna Claire Vollers.

Alice Miranda Ollstein: Politico’s “‘There Was a Lot of Anxiety’: Florida’s Immigration Crackdown Is Causing Patients to Skip Care,” by Arek Sarkissian.

Rachel Cohrs: Stat’s “FTC Doubles Down in Welsh Carson Anesthesia Case to Limit Private Equity’s Physician Buyouts,” by Bob Herman. And Modern Healthcare’s “Private Equity Medicare Advantage Investment Slumps: Report,” by Nona Tepper.

Lauren Weber: The Wall Street Journal’s “Climate Change Has Hit Home Insurance. Is Health Insurance Next?” by Yusuf Khan.

Also mentioned on this week’s podcast:

• The Washington Post’s “U.S. Investigates Alleged Medicare Fraud Scheme Estimated at $2 Billion,” by Dan Diamond, Lauren Weber, and Dan Keating.
• Super Bowl ads from Pfizer, Power to the Patients, and the American Values 2024 super PAC.
• KFF Health News’ “Rapper Fat Joe Says No One Is Making Sure Hospitals Post Their Prices,” by Julie Appleby.

click to open the transcript

Transcript: Biden Wins Early Court Test for Medicare Drug Negotiations

KFF Health News’ ‘What the Health?’Episode Title: Biden Wins Early Court Test for Medicare Drug NegotiationsEpisode Number: 334Published: Feb. 15, 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, Feb. 15, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go.

We are joined today via video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Rovner: Lauren Weber of The Washington Post.

Lauren Weber: Hello, hello.

Rovner: And Rachel Cohrs of Stat News.

Rachel Cohrs: Hi everyone.

Rovner: No interview this week, but we do have a special Valentine’s Day surprise. But first, the news. We’re going to start this week in federal district court, where the drug industry has lost its first legal challenge to the Biden administration’s Medicare drug price negotiation program, although on a technicality. Rachel, which case was this, and now what happens?

Cohrs: This was the capital “P” PhRMA trade association. And this case was a little bit of a stretch, anyways, because they were trying to find some way to get a judge in Texas to hear it. Because the broader strategy is for companies and trade groups to spread out across the country and try to get conflicting decisions from these lower courts.

Rovner: Which would force the Supreme Court to take it?

Cohrs: Exactly, yes. Or make it more likely. So PhRMA, in this case, they had recruited, there’s a national group that represents infusion centers and that was headquartered in Texas. The judge ultimately ended up ruling that this association didn’t follow the right procedure to qualify for judicial review and threw them off the case. And then they were like, well, if you throw them off the case, then there’s nobody in Texas, you can’t hear this here. So that was the ultimate decision there, but this could come back up. It was dismissed without prejudice. So this isn’t the end of the road for this lawsuit.

And it’s important to keep in mind that this wasn’t a ruling on any of the substance of the arguments. And trade groups generally are going to have less of an argument for standing, or it’s going to be a harder argument than the companies themselves that actually have drugs up for negotiation.

Rovner: And they’re suing too, the drug companies?

Cohrs: They are suing too. Yeah, just for everybody to keep on your calendars, there’s a judge in New Jersey who is hoping to have a quadruple oral argument on four of these cases, so stay tuned. That could be coming early next month. But these are very much moving. I think we are going to get insight on some of these arguments pretty soon, but this case is not quite that test case yet.

Rovner: All right, well, we’ll get to it eventually. Well, moving on to Capitol Hill. When we were taping last week, Sen. Bernie Sanders was holding his much-publicized hearing to grill drug company CEOs about their too-high prices. Rachel, you were there. Did anything significant happen?

Cohrs: I think it was kind of expected. I don’t think we were trying to find any innovative legislative solutions here. Honestly, it seemed, just from a candid take, that a lot of these lawmakers were not very well-prepared for questioning. There were a couple of notable exceptions, but we didn’t learn a whole lot new about why drug prices are high in the United States, how our system works differently from other countries.

I did find some useful nuggets in the CEO’s testimony about how low the net prices are for some of their medications, that they’re already offering a 70% discount, a 90% discount, which to me just kind of put into perspective some of the discounts we could be hearing in the Medicare negotiation program. That oh, even if it’s a 90% discount, that might not even be different from what they’re paying now. So just interesting to file a way for the future, but I think it was mostly a non-event for the CEOs who, for some reason, had to, under the threat of subpoena, come make these arguments. So it seemed like much ado about not a whole lot of substance.

Rovner: That was sort of my theory going in, but you always have to watch just in case. Well, also on Capitol Hill, the chairman of the powerful House Energy and Commerce Committee announced she will retire at the end of the Congress. Cathy McMorris Rodgers, who’s a Republican from Washington, was in her first term as chair of the committee that oversees parts of Medicare, all of Medicaid, as well as the entire U.S. Public Health Service.

I imagine this is going to set off a good bit of jockeying to take her place. And why would somebody step down early from such a powerful position? Do we have any idea?

Cohrs: Have you seen …? Oh, go ahead.

Ollstein: Facing Congress is what you say? Yes. This is part of a wave of retirements we’ve been seeing recently, including from some other committee chairs who could have theoretically continued to be powerful committee chairs for several years to come. People are taking this as part of the bad sign for Republicans. Either a sign that they don’t believe they’re going to hold the majority after this November’s election, or they’re just so fed up with the struggles they’ve had governing over the last few years and the inability to get anything done. And people are thinking, well, maybe I can get something done in a different role, not in Congress, because certainly, we’re not doing too much here to be proud of.

Rovner: Yeah, I feel like Cathy McMorris Rodgers is kind of this poster child for a very conservative Republican who’s not the far-right-wing MAGA type, who actually wants to do legislation. She just wants to do Republican legislation, and that seems to be getting harder in the House.

Ollstein: Right, right. And there’s a concern that, particularly on the right within Republicans, that we’re losing a health policy brain trust. We’re losing the people that have been really integral to a lot of the nitty-gritty policy work over the years, and they’re not being replaced with people who have that interest. They’re being replaced with people who are more focused on culture wars and other things. And so there’s concern in the future about the ability to cobble together things like Medicare reimbursement rates, or these technical things that aren’t really part of the culture wars.

Rovner: Yeah, I think we mentioned at some point that Mike Burgess is also retiring, also high up on the Energy and Commerce Committee. And he’s a doctor who’s really had his hands into some of this really nerdy stuff, like on Medicare physician reimbursement. And that will be obviously just a big loss of institutional memory there.

Cohrs: For the future of the committee, I know congressman Brett Guthrie has kind of thrown his hat in the ring to succeed her. Unclear who exactly is going to win this race, but he is the chairman of the health subcommittee, does bring some health expertise. So the E&C committee deals with a lot of different priorities, but if he were to succeed her, then I think we would see, at least at the top of the committee, some of the expertise remain.

Rovner: Well, meanwhile, in all of this jockeying, the next round of temporary government funding bills expires on March 1 and March 8, respectively, which is getting pretty close. And that brings back efforts to cancel the 3.4% pay cut that doctors got for Medicare patients in January. Where are we on funding, and are any of these health issues that people are out lobbying on going to make it into this next round? Is there going to be a next round?

Cohrs: Yeah, we don’t know if there’s going to be a next round, I don’t think. But at least the sources I’ve talked to have said that a full cancellation of the 3.4% cut for Medicare or payments to doctors is off the table at this point. They are hoping to do some sort of partial relief. They haven’t decided on percentages for that yet. And it’s unclear how much money will be available from pay-fors. It is still very much squishy, not finalized, two, three weeks out from the deadline, but I think …

Rovner: Two weeks.

Cohrs: There is some agreement on some relief, which has not been the case thus far for doctors. So I think that’s a positive sign.

Ollstein: Yeah. Overall, the chatter is about the need for yet another CR [continuing resolution] because the work is not getting done in time to meet these deadlines. That seems to be where we’re headed. Obviously, that will piss off a lot of members on the right who don’t want another CR, who didn’t want the last couple CRs. And so once again, we are staring down a possible shutdown.

Rovner: And I had forgotten, somebody reminded me, that even if they get another temporary funding bill, starting in April, there are automatic cuts if they’re not finished with this year’s funding bills. Which, I don’t know, is there any indication that they’re going to be finished with them by April either? I have not seen a lot of progress here. They’ve been fighting over other things, which is fine to fight over other things, but I’m not noticing a lot happening on the spending bills.

I’m seeing a lot of shaking heads. I guess nobody else is noticing either. Well, we will obviously keep watching that space because next week, we will only be one week away.

Well, another Medicare policy that supporters are hoping to get into one or another of these spending bills is creating something called more site-neutral payments in Medicare. Currently, Medicare pays hospitals and hospital outpatient departments, and sometimes even hospital-owned physician practices, more than it pays non-hospital affiliated providers for the exact same service.

The theory is that hospitals need higher payments because they have higher fixed costs, like keeping emergency rooms open 24/7. But it costs Medicare many billions of taxpayer dollars for this differential in payments. And this has become quite the lobbying frenzy for the hospital industry, yes?

Cohrs: Yes. I think it’s something that they can all get on board with hating, and I think they view it similarly to the drug pricing debate as a slippery slope. The policy Congress really is looking at now is a $3 billion, very small slice of all the services that could potentially be subjected to site-neutral payments. But the whole pie here is $150 billion potentially for Medicare.

We’re talking hundreds of billions of dollars for commercial payments. So I think they are really pushing to get to lawmakers, especially, from what I’ve talked to Senate Republicans, they are just not on board with it, they’re worried about the rural hospitals. And if they can connect to those things, which they have been successful in doing so far, they’re just not going to get very far.

I mean, if you look at the Senate Finance Committee, you have Mike Crapo from Idaho, Republican leadership. You have [John] Barrasso from Wyoming. There’s really just so many rural states that even Chuck Grassley, who is a moderate on a lot of health policy issues, talked about his rural hospitals in Iowa as soon as I asked him about this. So they’re not there yet right now, but I think hospitals are trying to keep it that way.

Rovner: And it was ever thus that the Senate is much more rural-focused than the House because pretty much every single senator has at least part of a rural area that they represent. Lauren, you wanted to add something?

Weber: Yeah, I just wanted to say, I always find it funny when rural hospitals come up as a cudgel by the big hospital associations, who don’t seem to look out for them the vast majority of the time when they’re closing. But as you pointed out, the Senate is much more rural-focused. So I do agree with all of you all, that I question whether or not this will have much ground to gain.

Rovner: Yeah. And the other thing that I keep wanting to point out is that there’s all this talk on Capitol Hill among Republicans of cutting the spending bills, the appropriations, and we’re going to balance the budget. Well, there’s just not enough money in the appropriation bills to do anything to the deficit. The money is in things like Medicare. I mean, that’s where, if you really want to make a dent in the deficit, you’re going to do it. And, as we’re seeing with this particular fight, every time they want to do something that’s going to save money, it’s going to hurt somebody. And I mean, there are obviously legitimate concerns about rural hospitals that are in trouble, particularly in states that haven’t expanded Medicaid, but that’s one of the reasons. It’s not so much the spending bills that make it hard to do anything about the deficit. It’s fights like these.

Meanwhile, for better or worse, another reason that Medicare costs so much is that it’s subject to a lot of fraud. Lauren, I have seen a lot of Medicare fraud stories over the years, but you’ve got one that was discovered in a pretty novel way. So tell us about it.

Weber: Yeah, my colleagues Dan Diamond, Dan Keating, and I found out early last week — we got a tip from the National Association of ACOs [Accountable Care Organizations] saying that they had seen this massive spike in catheter billing. When we did some digging into the companies they had identified — and to be clear, that spike of catheter billing was worth an alleged $2 billion in billings to Medicare. So when we talk about site-neutral payments, that’s almost what you would get for site-neutral payments: the $2 billion in Medicare fraud, but regardless.

So my colleagues and I dug in. So Dan, Dan, and I called around, and we found links between the seven companies that were charging Medicare for catheters that folks never received. I want to point out, I spoke to this lovely woman in Ponta Vedra Beach, Florida. She’s 74, Aileen Hatcher, who spotted this diligently going through her Medicare form, but as she said, she went to her — literally, these are her words — she’s like, “I went to my old lady luncheon and told them all this was on my Medicare statement.” And they said, “Oh, we don’t read those because we don’t pay Medicare the money. So we don’t read the explanation of benefits to see what we’ve been charged.”

And, unfortunately, I think that is what happens a lot of times with Medicare fraud. It goes unnoticed because folks aren’t the ones paying the dollars. But the bottom line is this was so large and so many people called into Medicare that Dan and I discovered that there is an ongoing federal investigation. Three of the companies, former owners that I called, confirmed to me that FBI had interviewed them or was talking to them about these folks that had taken over the companies and started charging Medicare this much money. And Dan also got some sources on that front as well.

So, I mean, it’s a pretty massive Medicare fraud scheme. I’ll give a call-out here. If anyone here has been affected by catheter and Medicare fraud, please give me an email. We’d love to hear more. I think it speaks to the fact that Medicare fraud — we all know this because we cover this — Medicare fraud is as old as time. It continues to happen, especially durable medical equipment Medicare fraud. But this is so much money. And it is wild that even though we talked to so many people that called Medicare over and over and over again, these folks were able to get away with billing for a very long time.

Rovner: What I found really fascinating about the story, though, is that it was the doctors in the ACOs that spotted it because — we’ve talked about these accountable care organizations — they’re accountable for how much it costs to take care of their patients.

The patients aren’t paying for it, as they point out, but these doctors, it’s coming right out of their bonuses and what they’re charged and how much they get for Medicare. So there’s finally somebody with a real incentive to spot this kind of fraud, because, basically, it was taking money from them. Right?

Weber: That’s exactly right. I think that’s why they were so hot to have some movement on this because, as they pointed out, they could lose millions of dollars in bonuses for better taking care of their patients.

It’s wild that it gets to this point. Like I said, we had all these people that called in to Medicare and many fraud lawyers we talked to said, “Look, why aren’t the NPIs [National Provider Identifiers] turned off?” Great question.

Rovner: Yeah. Anyway, I was fascinated by this story, and as I told Lauren earlier, I’m not a big fan of Medicare fraud stories just because there are so many of them. But this one is like, oh, maybe we finally have somebody … the ACOs can become bounty hunters for Medicare fraud, which would not be a bad thing.

All right, well, moving on to abortion this week, we have spent a lot of time talking about how doctors who perform abortions and patients who need them in emergencies have been trying to get state officials to spell out when the exceptions to state bans apply. Well, now it seems that it’s the other side looking for clarification.

Stat News reports that several anti-abortion groups have joined doctors and patients in urging the Texas Medical Board to spell out which conditions would qualify for the exception to the ban, and not subject doctors who guess wrong to potential prison terms and loss of their medical licenses.

Meanwhile, legislation moving through the House in South Dakota, endorsed by multiple anti-abortion groups, would require the state to make a video explaining how its ban works and under what circumstances. Alice, what’s going on here?

Ollstein: I think it’s this interesting confluence and it’s an interesting development because, at first, anti-abortion groups were insisting that the laws were perfectly clear. And that doctors were either willfully or mistakenly misinterpreting them. As more and more stories came forward of women being turned away while experiencing a medical emergency and suffering harm as a result, a lot of those women are part of lawsuits now.

They were saying the law is fine. In some cases, these anti-abortion groups wrote the laws themselves or advised on them saying, your interpretation is what’s wrong. The law is fine. But I think as so many of these stories are coming out, that’s not proving enough. And now they’re going back and saying, OK, well, maybe there do need to be some clarifications. They don’t want changes. There’s different camps because some people do want changes. Some people say, OK, we need more exceptions. We need more carve-outs to avoid these painful stories. Whereas other anti-abortion forces and elected officials say, no, we don’t need to change the law. We just need to clarify it and explain it. And so I think that’s going to be an ongoing tension.

Rovner: Yeah, I know one of the big themes earlier in this whole fight — I won’t say earlier this year, it was mostly last year — was redefining things as not abortions. That if you’re terminating an ectopic pregnancy, that’s not an abortion. Well, that is an abortion.

Ollstein: Medically, yes.

Rovner: So apparently, the … right. The renaming has not worked so far. So now I guess they’re trying to clarify things. Lauren, you wanted to add something?

Weber: Yeah, I just wanted to say, when you kick things to the medical board, I think people see that as an unbiased unpolitical organization. But medical boards are often appointed by the governor. So, in this case, Gov. [Greg] Abbott. And also take Ohio, for example: I believe that one of their medical board leaders is the head of the right-to-life movement.

I haven’t looked at Texas’. But kicking it to the medical board to make a decision — putting aside the fact that most medical boards are incredibly inadequate at their actual job, which is disciplining doctors, they’re not necessarily known for their competence — is that you also deal with some of the politics involved in this as well.

Rovner: So in South Dakota, it would kick this to the South Dakota Department of Health, which, of course, is controlled by the governor, who’s a Republican and pro-lifer. And so it’s hard to imagine what sort of doing a video explaining this is going to do to clarify things any further than they already think the law has gone. But at least … I’m fascinated by the effort here, that this is going on in multiple states. Speaking of state legislators, in Missouri, they’re working on a bill to create an abortion ban exception for children 12 and under — obviously thinking of the 10-year-old in Ohio in 2022 [who] had to go to Indiana to get a pregnancy terminated. But one Republican state senator complained that “a 1-year-old could get an abortion under this.” This is a serious question: Should legislators have to pass a basic biology test to make laws about reproductive health? As we know, 1-year-olds cannot get pregnant.

Ollstein: I mean, this was a more glaring example. We see this over and over in a lot more subtle ways, too, where doctors and medical societies are pointing out that these laws are drafted using language that is not medically accurate at all. And it can be small things in terms of when someone should qualify for a medical exemption to an abortion ban. Some states have language around if it would cause “irreversible damage.” That’s not a term doctors use in that circumstance, things like that. Or a major bodily function would be impaired if they don’t get an abortion. Well, what is a major bodily function? That’s not defined. And so, yes, this was an almost laughable example of this, but I think that it’s a sign of something more pervasive and maybe less obvious.

Rovner: Yeah, I mean, I have listened to a lot of state debates with a lot of legislators saying things that are, as I say, kind of laughably inaccurate. Sorry, Lauren.

Weber: Oh, I would just say as a Missourian and as someone who lived in Missouri until a year ago, this gentleman, in particular, it does seem like has a history of making somewhat inflammatory statements that he knows will be picked up by the media. I mean, I think he brought a flamethrower to an event. I mean, I think that’s part of the shtick. But welcome to Missouri politics. You never know what you’re going to get.

Ollstein: And of course, we have the famous assertion that people can’t get pregnant as a result of rape because the body knows how to shut it down, which is obviously not …

Rovner: Which happened in a Missouri Senate race.

Ollstein: Yes. Yep. Exactly. So Missouri, once again, covering itself in glory.

Rovner: All right, well, something we haven’t talked about a lot recently are crisis pregnancy centers, which are usually storefronts for anti-abortion organizations that often lure women seeking abortions by offering free pregnancy tests and ultrasounds so that they can then talk them into carrying their pregnancies to term. The centers are getting more and more public support from states. One estimate is that government support totaled some $344 million in fiscal 2022. So that was a couple of years back. And increasingly as abortion clinics close in states with bans, crisis pregnancy centers, which typically don’t have medical professionals on staff and aren’t technically medical facilities, may be the only resource available to pregnant women. It seems that could have some pretty serious ramifications. Yes?

Ollstein: I mean, I think people don’t realize just how vast the network of these centers are. They outnumber abortion clinics by a lot in a lot of states, including states that support abortion rights. They’re very, very pervasive. And this is becoming a huge focus for the anti-abortion movement. It was basically the theme of this year’s March for Life, was these sort of resources. In part, it is an attempt to show a kinder face of the movement and change public opinion. Obviously, like we discussed, there are all these painful stories coming out about people being denied care. And so promoting these stories of places that provide some form of something, some services, it’s not necessarily medical care, but …

Rovner: They provide diapers and strollers and car seats. I mean, they do actually … many of them actually provide services for babies once they’re born.

Ollstein: Right. Right, right, right. And so I think there is going to be a huge focus on this in the policy space, both in terms of directing more taxpayer funding to these centers, which progressives vehemently oppose.

And so I think this is going to be a big focus going forward. It already has in Texas. Texas has directed a lot of money towards what they call alternatives to abortion, which include these centers. And so I think it’s going to be a big focus going forward.

Rovner: Well, one other thing about crisis pregnancy centers, because they are not medical facilities, they are not subject to HIPAA medical privacy rules. And it turns out that is important. According to an investigation by Senate Finance Committee Chairman Ron Wyden, a company gathered and sold location data for people whose phones were in or around 600 separate Planned Parenthood locations, without the patients’ consent, to use an anti-abortion advertising.

Wyden is asking the SEC and the FTC to investigate the company, but this raises broader questions about information privacy, particularly in the reproductive health space. I remember right after Roe v. Wade was overturned, there were lots of warnings to women who were using period-tracking apps and other things about the concern about people who you may not want to know your private medical situation being able to find out your private medical situations. Is there any indication that there’s any way from the federal government point of view to crack down on this?

Ollstein: So I don’t know about that specifically, but there is a bigger effort on privacy and digital privacy and how it relates to abortion. We’re still waiting on the release of the final HIPAA rule from the Biden administration, which will extend more protections around abortion data, I think. But, because it’s HIPAA, it does only apply to certain entities and these centers are not among them. Another area I’ve been hearing concern about is research. A researcher at a university who is studying people who have abortions or don’t have abortions, their data is not protected. And so they are very stressed out about that, and that’s compromising medical research right now. So there’s a lot of these different areas of concern. And as we so often see, technology evolves a hell of a lot faster than government evolves to regulate it and address it. And that is just an ongoing concern.

Rovner: Yes, it is. And at some point, we’ll talk about artificial intelligence, but not today. Actually, right now, I want to turn to the Super Bowl. Yes, the Super Bowl. In between all the ads for blockbuster movies, beer, cars, and snack foods, and, right, a football game, there were three ads aimed directly at health policy issues.

In one, the nonprofit price transparency advocacy group Power to the Patients got musicians Jelly Roll, Lainey Wilson, and Valerie June to basically call hospitals and insurance companies greedy. It’s not clear to me if this was a free PSA or if this group paid for it, but I suspect the latter.

Does anybody know who this group is? They seem to have lots of access to big names for what seems to be a kind of obscure health issue. I mean, everybody’s for transparency, but I don’t think I’ve ever seen a Super Bowl ad about it.

Cohrs: This is not their first Super Bowl. It’s backed by Cynthia Fisher who is married to the CEO of Sam Adams, parent company. And he’s also a member of the Koch family. But she has been passionate about health care price transparency for years. I mean, was in President [Donald] Trump’s ear, has made the legal argument that the authority existed under the Affordable Care Act. Lobbied to get these regulations passed. And she has definitely employed unusual or unorthodox techniques, like Super Bowl ads, like painting murals, like hosting parties and concerts for health staff and health policy people in D.C. And I think she’s also lobbying for the codification of these transparency regulations.

And it is a little wonky, but I think her frustration is that she lobbied so hard to get these price transparency regulations and everyday people don’t even know that it should be available for them. And obviously academics disagree over how useful that information is for everyday people. But I think she has just taken it upon herself to do the PR campaign for these regulations that she believes could help people make more educated decisions about care that isn’t necessarily emergency care, like MRIs, that kind of thing. So she’s been around for years and has been very active.

I think Fat Joe is another celebrity that she’s brought onto the case. Jelly Roll — I hadn’t seen him do an event with her before or an ad. But I think there’s an ever-expanding cast of celebrities where this is just … it seems like a pretty noncontroversial issue. So I mean, Busta Rhymes, like French Montana, there’s been a lot of people involved in this campaign and I expect it to be ongoing.

Rovner: I feel like she’s kind of the Mark Cuban of price transparency, where Mark Cuban is all into drug prices. Alice, you want to add something?

Ollstein: Well, it’s just funny to me because, as we’ve discussed many, many times on this podcast, transparency goes not very far in helping actual patients. And so it’s funny that a group called Power to the Patients is going all in on this issue when, as we know, the vast majority of health care people need they cannot shop around for and, even when they can, it’s not something people are always able or willing to do.

And so transparency gets a lot of bipartisan support and sounds good in theory, but we’ve seen in terms of what’s been implemented so far in terms of hospital prices, et cetera, that it doesn’t do that much to bring down prices or empower people.

Rovner: Although, I don’t know, getting famous people to care about health policy can’t be a terrible thing. Lauren, did you want to add something too?

Weber: No, I just wanted to say, I mean, I will say as much as we’re all clear on price transparency, what this all means, the Super Bowl is a new audience. So, I mean, if you’re going to spend your money, at least you’re spending it — and that was the most watched TV program, I believe, of all time — so you’re spending it in a way that you’re getting some eyeballs on it.

Rovner: All right, well, that was not the only ad. Next, a company that clearly did pay for its ad was Pfizer, which used a soundtrack by Queen and talking paintings and statues to celebrate science and declare war on cancer. This is also one I don’t think I had seen before. I mean, what is Pfizer up to here? I mean, obviously, Pfizer can afford a Super Bowl ad. There’s no question about that, but why would they want to?

Cohrs: I mean, Pfizer has not been performing great financially lately. And I think they pulled out of the lobbying organization biome and chose to spend money on a Super Bowl ad, which I think is a really interesting choice. I mean, I don’t know what the dues are, but a Super Bowl ad is an expensive thing.

And I think there has been this attack on science, as a whole, and I think there’s an outstanding question of how to rebuild trust. And I think that this was Pfizer’s unorthodox tactic of trying to equate themselves with more credible, historical scientists who are less controversial. Yeah, my colleague did a good story on it.

Rovner: Yeah, like Einstein.

Cohrs: Right.

Rovner: Well, we’ll link to all of these ads. If you haven’t seen them there, they’re definitely worth watching. Well, finally, and in keeping with the occasional politics that does creep into Super Bowl ads, the super PAC supporting the presidential candidacy of independent anti-vaxxer Robert F. Kennedy Jr. paid $7 million for an ad that was basically a remake of the 1960 ad for his uncle John F. Kennedy, when he was running for president, which provoked an outcry from several of his Kennedy cousins who have repeatedly disavowed RFK Jr.’s candidacy and his causes.

For his part, the candidate apologized to his family members and said he didn’t have anything to do with the ad directly, because it was the super PAC. But then he pinned it to his Twitter profile, where he has more than 2½ followers. I can’t help but wonder if they’re going after football fans who actually believe the whole Taylor Swift-Travis Kelsey thing is a conspiracy.

No comment on Robert F. Kennedy Jr. and pissing off his entire family? We will move ahead then.

Speaking of conspiracy theories, in “This Week in Health Misinformation,” we have — drum roll — blood transfusions. Seems that there are a significant number of people who believe that getting blood from someone who has been vaccinated against covid, using the mRNA vaccines, will somehow change their DNA or otherwise harm them. And state legislators are listening.

In Wyoming, a state representative has introduced a bill that would require the labeling of blood from a covid-vaccinated donor. So prospective recipients could refuse it, at least in nonemergency situations. And in Montana, there’s a bill that would go even further, banning blood donations from the covid-vaccinated. That one appears to not be going anywhere, but this could have serious implications. It would create blood shortages, I imagine, even in rural areas where fewer people are vaccinated than in some of the urban areas. But I mean, this strikes me as not an insignificant kind of movement.

Ollstein: Well, it seems troubling on two fronts. One, we already have blood shortages and we already have dangerously low vaccination rates and not just covid vaccination rates. The hesitancy and anti-vax sentiment is spilling over into routine childhood vaccinations and all kinds of things.

And so I think anything that appears to give that sort of stigma and conspiracy a veneer of credibility, like state law for instance, threatens to further entrench those trends.

Rovner: All right, well, that is this week’s news. We will do our extra credits in a minute, but first, as promised, we have the winners of the KFF Health News “Health Policy Valentines” contest. This year’s winner, and we will post the link to the poem and its accompanying illustration, is from Jennifer Reck.

It goes, “Darling, this Valentine’s Day, let’s grab our passports and fly away to someplace where the same drugs cost a fraction of what they do in the States.” I have asked the panel to each choose a finalist of their own to read. So, Lauren, why don’t you start?

Weber: “The paperwork flirts with my affections, a dance of denials, full of rejections. My heart yearns for you, my sweet medication, but insurance insists on prior authorization.”

Rovner: And who’s that from?

Weber: That’s from Sally Nix. Excellent work, Sally.

Rovner: Alice.

Ollstein: OK, I have one from Kara Gavin. It’s “My love for you, darling, is blinding / Like a clinical trial pre-findings / But I fear we shall part / And I’ll lose my heart/ Because of Medicaid unwinding!” Very topical.

Rovner: Very. Rachel.

Cohrs: OK, this is from Andrea Ferguson. “Parental love is beautiful and guess what makes it stronger? A paid parental leave policy to stay with baby longer.”

Rovner: Very nice. Thank you all who entered. And we’ll do this again next year. All right, now it is time for our extra credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Alice, why don’t you go first this week?

Ollstein: I have a piece from my colleague Arek Sarkissian, down in Florida, and it is about how the state’s immigration law is deterring immigrants from seeking health care. And one of the areas they’re most concerned about is maternal health care. We already are in a maternal health crisis and the law requires hospitals that receive Medicaid funding to ask people about their immigration status when they come in for care. What a lot of people don’t know is that they don’t have to answer, but this fear of being asked and potentially being flagged for deportation enforcement, et cetera, is making people avoid care. And so there’s just a lot of concern about this and a lot of attempts to educate folks in the immigrant community. Obviously, Florida has a very large immigrant community. And it just reminded me of the fears that were happening early in the pandemic when the public charge rule under Trump was in effect and it was deterring immigrants from seeking care.

And in the middle of a pandemic, when we’re dealing with an infectious disease that doesn’t care if you have citizenship or not, having a large segment of the population avoid care is dangerous for everyone.

Rovner: Indeed. Lauren.

Weber: So I chose an article titled “Climate Change Has Hit Home Insurance. Is Health Insurance Next?” by Yusuf Khan in The Wall Street Journal. And, I mean, look, the insurers are — they’re looking out for their bottom line. And the bottom line is that climate change does have health impacts. So the question is, will that start to hit premiums? The sad answer, in part of this article, is that, unfortunately, the people often most affected by climate change don’t have health insurance. So that may not affect premiums as much as we expect, but I think this is a really fascinating test case of how when climate change comes for your money, you’ll start to see it validated more. So I’ll be curious to see how this plays out with the various health insurers.

Rovner: Yeah, obviously, we’re already seeing people not being able to get home insurance in places like Florida and California because of increasing fires and increasing hurricanes and increasing flooding in some places. Rachel?

Cohrs: So mine is a package deal. It’s two stories related to private equity investment in health care. The first is a piece in Modern Healthcare by Nona Tepper on a Medicare Advantage report by the Private Equity Stakeholder Project. And it just kind of highlighted the downturn in investment in Medicare Advantage, like marketing companies and brokers, consultants.

And I thought it was an interesting take because, I think so often, we see reporting about how private equity is expanding its investment in a certain sector. But this, I think, was an interesting indicator where, oh, it’s turning downward so dramatically. And I think that it’s interesting to track the tail end of more regulation or whatever rule comes out. How does that impact investment? And we talk a lot about that in the pharmaceutical space. But I thought this was a great interesting creative take on the Medicare Advantage side of things.

And also just highlighting some reporting from my colleague Bob Herman about the FTC doubling down on the Welsh Carson’s anesthesia case to limit private equity’s physician buyouts. So the FTC is taking on Welsh Carson, a powerful private equity firm, and other private equity firms asked for the case to be dismissed. And Bob does a great job breaking down these really complicated arguments by the FTC as to why they’re not backing down. They’re not going to cut a deal, they want this case to go forward.

So it will be interesting to watch as this develops, but I think Bob makes a great argument. There are applications for other cases as well and for the FTC and being able to attack these complex corporate arrangements where they’re using subsidiaries to drive prices up for physician services and other things. So definitely worth a read from Bob.

Rovner: Yes, another theme of the Federal Trade Commission getting more and more involved in health care in general and private equity in health care in particular. My extra credit this week is from Stateline by Anna Claire Vollers, and it’s called “Government Can Erase Your Medical Debt for Pennies on the Dollar — And Some Are.” It’s about how a growing number of states and cities are buying up and forgiving medical debt for their residents. Backers of the plans point out that medical debt is a societal problem that deserves a societal solution. And that relieving people’s debt burdens can actually add to economic growth. So it’s a good return on a small investment. It’s obviously not going to solve the medical debt problem, but it may well buy some government goodwill for some of the people of these states and cities.

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 to Stephanie Stapleton, filling in this week as our editor. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X, @jrovner, or @julierovner at Bluesky and @julie.rovner at Threads. Lauren, where are you these days?

Weber: Still just on Twitter @LaurenWeberHP, or X, I guess.

Rovner: Alice.

Ollstein: On X @AliceOllstein and on Bluesky @alicemiranda.

Rovner: Rachel.

Cohrs: I’m @rachelcohrs on X and also getting more engaged on LinkedIn lately. So feel free to follow me there.

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

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

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

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

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

Panelists

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's articles.

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah's stories.

Sandhya Raman
CQ Roll Call

@SandhyaWrites

Read Sandhya's stories.

Among the takeaways from this week’s episode:

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

Also this week, Rovner interviews Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” feature, about a husband and wife billed for preventive care that should have been fully covered. If you have an outrageous or confounding medical bill you’d like to share with us, you can do that here.

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

Julie Rovner: ProPublica’s “Amid Recall Crisis, Philips Agrees to Stop Selling Sleep Apnea Machines in the United States,” by Debbie Cenziper, ProPublica, and Michael D. Sallah, Pittsburgh Post-Gazette.

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

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

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

Also mentioned on this week’s podcast:

• Politico’s “The Anti-Abortion Plan Ready for Trump on Day One,” by Alice Miranda Ollstein.
• The 19th’s “The Tools Trump Cold Use to Curb Abortion Access if He’s Elected,” by Shefali Luthra and Mel Leonor Barclay.
• The New York Times’ “How Trump Could Institute a Backdoor Federal Abortion Ban,” by Mary Ziegler.
• CQ Roll Call’s “GOP Pivots on Abortion Stance as 2024 Nears,” by Ariel Cohen and Sandhya Raman.

click to open the transcript

Transcript: The Struggle Over Who Gets the Last Word

KFF Health News’ ‘What the Health?’Episode Title: The Struggle Over Who Gets the Last WordEpisode Number: 332Published: Feb. 1, 2024

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We are taping this week on Thursday, Feb. 1, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go.

We are joined today via video conference by Joanne Kenen of Johns Hopkins University and Politico Magazine.

Joanne Kenen: Good morning, everybody.

Rovner: Sandhya Raman of CQ Roll Call.

Sandhya Raman: Hello, everyone.

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

Sarah Karlin-Smith: Morning.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rovner: Services Task Force.

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

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

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

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

Rovner: They basically kick Planned Parenthood in or out.

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

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

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

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

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

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

Kenen: No, I said 10 to …

Rovner: I remember it really vividly.

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

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

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

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

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

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

Rovner: Which is true.

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

Rovner: Not that uncommon for him, though …

Kenen: No, but …

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

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

Rovner: Yeah.

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

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

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

Rovner: Yeah.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Samantha Liss: Hi.

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

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

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

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

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

Liss: Exactly.

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

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

Rovner: So what eventually happened?

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

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

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

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

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

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

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

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

Liss: Yes, please do.

Rovner: Sam Liss, thank you very much.

Liss: Thanks.

Rovner: OK, we’re back. It’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Joanne, you have my favorite this week, why don’t you go first?

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

Rovner: Absolutely. Sarah?

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

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

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

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

OK, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left a review; that helps other people find us, too. Special thanks, as always, to our technical guru, Francis Ying, and our editor, Emmarie Huetteman. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X, @jrovner, or @julierovner at Bluesky and @julie.rovner at Threads. Joanne, where are you hanging out these days?

Kenen: I’m mostly on Threads @joannekenen1.

Rovner: Sarah?

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

Rovner: Sandhya?

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

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

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For decades, rates of the sexually transmitted infection were low. But the Hamilton County Health Department in Chattanooga — a midsize city surrounded by national forests and nestled into the Appalachian foothills of Tennessee — was seeing several syphilis patients a day, Miller said. A nurse who had worked at the clinic for decades told Miller the wave of patients was a radical change from the norm.

What Miller observed in Chattanooga is reflective of a trend that is raising alarm bells for health departments across the country.

Nationwide, syphilis rates are at a 70-year high. The Centers for Disease Control and Prevention said Jan. 30 that 207,255 cases were reported in 2022, continuing a steep increase over five years. Between 2018 and 2022, syphilis rates rose about 80%. The epidemic of sexually transmitted infections — especially syphilis — is “out of control,” said the National Coalition of STD Directors.

The surge has been even more pronounced in Tennessee, where infection rates for the first two stages of syphilis grew 86% between 2017 and 2021.

But this already difficult situation was complicated last spring by a shortage of a specific penicillin injection that is the go-to treatment for syphilis. The ongoing shortage is so severe that public health agencies have recommended that providers ration the drug — prioritizing pregnant patients, since it is the only syphilis treatment considered safe for them. Congenital syphilis, which happens when the mom spreads the disease to the fetus, can cause birth defects, miscarriages, and stillbirths.

Across the country, 3,755 cases of congenital syphilis were reported to the CDC in 2022 — that’s 10 times as high as the number a decade before, the recent data shows. Of those cases, 231 resulted in stillbirth and 51 led to infant death. The number of cases in babies swelled by 183% between 2018 and 2022.

“Lack of timely testing and adequate treatment during pregnancy contributed to 88% of cases of congenital syphilis,” said a report from the CDC released in November. “Testing and treatment gaps were present in the majority of cases across all races, ethnicities, and U.S. Census Bureau regions.”

Hamilton County’s syphilis rates have mirrored the national trend, with an increase in cases for all groups, including infants.

In November, the maternal and infant health advocacy organization March of Dimes released its annual report on states’ health outcomes. It found that, nationwide, about 15.5% of pregnant people received care beginning in the fifth month of pregnancy or later — or attended fewer than half the recommended prenatal visits. In Tennessee, the rate was even worse, 17.4%.

But Miller said even those who attend every recommended appointment can run into problems because providers are required to test for syphilis only at the beginning of a pregnancy. The idea is that if you test a few weeks before birth, there is time to treat the infection.

However, that recommendation hinges on whether the provider suspects the patient was exposed to the bacterium that causes syphilis, which may not be obvious for people who say their relationships are monogamous.

“What we found is, a lot of times their partner was not as monogamous, and they were bringing it into the relationship,” Miller said.

Even if the patient tested negative initially, they may have contracted syphilis later in pregnancy, when testing for the disease is not routine, he said.

Two antibiotics are used to treat syphilis, the injectable penicillin and an oral drug called doxycycline.

Patients allergic to penicillin are often prescribed the oral antibiotic. But the World Health Organization strongly advises pregnant patients to avoid doxycycline because it can cause severe bone and teeth deformities in the infant.

As a result, pregnant syphilis patients are often given penicillin, even when they’re allergic, using a technique called desensitization, said Mark Turrentine, a Houston OB-GYN. Patients are given low doses in a hospital setting to help their bodies get used to the drug and to check for a severe reaction. The penicillin shot is a one-and-done technique, unlike an antibiotic, which requires sticking to a two-week regimen.

“It’s tough to take a medication for a long period of time,” Turrentine said. The single injection can provide patients and their clinicians peace of mind. “If they don’t come back for whatever reason, you’re not worried about it,” he said.

The Metro Public Health Department in Nashville, Tennessee, began giving all nonpregnant adults with syphilis the oral antibiotic in July, said Laura Varnier, nursing and clinical director.

Turrentine said he started seeing advisories about the injectable penicillin shortage in April, around the time the antibiotic amoxicillin became difficult to find and physicians were using penicillin as a substitute, potentially precipitating the shortage, he said.

The rise in syphilis has created demand for the injection that manufacturer Pfizer can’t keep up with, according to the American Society of Health-System Pharmacists. “There is insufficient supply for usual ordering,” the ASHP said in a memo.

Even though penicillin has been around a long time, manufacturing it is difficult, largely because so many people are allergic, said Erin Fox, associate chief pharmacy officer for the University of Utah health system and an adjunct professor at the university, who studies drug shortages.

“That means you can’t make other drugs on that manufacturing line,” she said. Only major manufacturers like Pfizer have the resources to build and operate such a specialized, cordoned-off facility. “It’s not necessarily efficient — or necessarily profitable,” Fox said.

In a statement, Pfizer confirmed the amoxicillin shortage and surge in syphilis increased demand for injectable penicillin by about 70%. Representatives said the company invested $38 million in the facility that produces this form of penicillin, hiring more staff and expanding the production line.

“This ramp up will take some time to be felt in the market, as product cycle time is 3-6 months from when product is manufactured to when it is available to be released to customers,” the statement reads. The company estimated the shortage would be significantly alleviated by spring.

In the meantime, Miller said, his clinic in Chattanooga is continuing to strategize. Each dose of injectable penicillin can cost hundreds of dollars. Plus, it has to be placed in cold storage, and it expires after 48 months.

Even with the dramatic increase in cases, syphilis is still relatively rare. More than 7 million people live in Tennessee, and in 2019, providers statewide reported 683 cases of syphilis.

Health departments like Miller’s treat the bulk of syphilis patients. Many patients are sent by their provider to the health department, which works with contact tracers to identify and notify sexual partners who might be affected and tests patients for other sexually transmitted infections, including HIV.

“When you diagnose in the office, think of it as just seeing the tip of the iceberg,” Miller said. “You need a team of individuals to be able to explore and look at the rest of the iceberg.”

This story is part of a partnership that includes WPLN, NPR, and 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).