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.

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.

For the first time, a jury has convicted a parent on charges related to their child’s mass-shooting crime: A Michigan mother of a school shooter was found guilty of involuntary manslaughter. What remains unclear is whether this case succeeded because of compelling evidence of negligence by the shooter’s mother or if this could become a new avenue for gun control advocates to pursue.

Meanwhile, a prominent publisher of medical journals has retracted two articles that lower-court judges used in reaching decisions that the abortion pill mifepristone should be restricted. The case is before the Supreme Court, with oral arguments scheduled for March 26.

This week’s panelists are Julie Rovner of KFF Health News, Sarah Karlin-Smith of the Pink Sheet, Alice Miranda Ollstein of Politico, and Rachana Pradhan of KFF Health News.

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Sarah Karlin-Smith
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Alice Miranda Ollstein
Politico

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Rachana Pradhan
KFF Health News

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Read Rachana's stories.

Among the takeaways from this week’s episode:

• Sage Journals, a major medical publisher, has retracted two studies central to abortion opponents’ arguments in a federal court case over access to the abortion pill mifepristone. Although the retraction came before next month’s Supreme Court hearing on the case, the now-discredited studies have permeated the public debate over mifepristone.
• Florida’s Supreme Court has until April 1 to stop a measure about the availability of abortion from appearing on the November ballot. The decision could be pivotal in determining abortion access in the South, as Florida’s current 15-week ban (compared with near-total bans in surrounding states) has made it a regional destination for abortion care.
• In Medicaid news, the nation is about halfway through the “unwinding,” the redetermination process states are undergoing to strip ineligible beneficiaries from the program’s rolls. Although the process will amount to the biggest purge of the Medicaid and Children’s Health Insurance Program rolls in a one-year period, it is expected that, when all is said and done, overall enrollment will look much as it did before the pandemic — though how many people are left uninsured remains to be seen.
• In the states, Georgia is suing the Biden administration to extend its Medicaid work-requirement program. Meanwhile, some states are using Medicaid funding to address housing issues. Despite evidence that addressing housing insecurity can improve health, it is also clear that state budgets would need to be adjusted to meet those needs.
• And in “This Week in Health Misinformation,” PolitiFact awarded a “Pants on Fire!” rating to the claim — in a fundraising ad for Rep. Matt Rosendale (R-Mont.) — that Anthony Fauci, former director of the National Institute of Allergy and Infectious Diseases, “brought COVID to Montana” a year before it spread through the U.S., among other spurious claims.

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

Julie Rovner: Alabama Daily News’ “Alabama Lawmakers Briefed on New ‘ALL Health’ Insurance Coverage Expansion Plan,” by Alexander Willis.

Alice Miranda Ollstein: Stat’s “FDA Urged to Move Faster to Fix Pulse Oximeters for Darker-Skinned Patients,” by Usha Lee McFarling.

Sarah Karlin-Smith: The Atlantic’s “GoFundMe Is a Health-Care Utility Now,” by Elisabeth Rosenthal.

Rachana Pradhan: North Carolina Health News’ “Atrium Health: A Unit of ‘Local Government’ Like No Other,” by Michelle Crouch and the Charlotte Ledger.

Also mentioned on this week’s podcast:

• Sage Journals’ “Retraction Notice.”
• KFF Health News’ “Halfway Through ‘Unwinding,’ Medicaid Enrollment Is Down About 10 Million,” by Phil Galewitz.
• KFF Health News’ “Congressman Off-Base in Ad Claiming Fauci Shipped Covid to Montana Before the Pandemic,” by Katheryn Houghton.

click to open the transcript

Transcript: To End School Shootings, Activists Consider a New Culprit: Parents

KFF Health News’ ‘What the Health?’Episode Title: To End School Shootings, Activists Consider a New Culprit: ParentsEpisode Number: 333Published: Feb. 8, 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. 8, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this, so here we go. Today, we are joined via video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Hello.

Rovner: Sarah Karlin-Smith of the Pink Sheet.

Karlin-Smith: Hi, everybody.

Rovner: And my KFF Health News colleague Rachana Pradhan.

Rachana Pradhan: Hi, Julie.

Rovner: No interview today, so we will get straight to the news. We’re going to start in Michigan this week, where a jury convicted the mother of a teenager, who shot 10 of his high school classmates and killed four of them, of involuntary manslaughter. This is the first time the parent of an underage mass school shooter has been successfully prosecuted. The shooter’s father will be tried separately starting next month. Some gun control advocates say this could open the door to lots more cases like this, but others think this may have been a one-off because prosecutors had particularly strong evidence that both parents should have known that their son was both in mental distress and had easy access to their unlocked gun. Is this possibly a whole new avenue to pursue for the whole “What are we going to do about school shooters?” problem?

Ollstein: I mean, it seems like we’re just in an era where people are just trying various different things. I mean, there was ongoing efforts to try to hold gun manufacturers liable. There were efforts on a lot of different fronts. And the goal is to prevent more shootings in the future and prevent more deaths. And so, I think the goal here is to impress upon other parents to be more responsible in terms of weapon storage and also in terms of being aware of their child’s distress.

So, whether or not that happens, I think, remains to be seen, but these shootings have just gone on and on and on and not slowed down. And so, I think there’s just a desperation to try different solutions.

Rovner: Yeah. Apparently in other states they’re starting to look at this, but I guess we talk so much about the chilling effect. That’s actually what they’re going for here, right? As you say, to try and get parents to at least be more careful if they have guns in the house of how they’re storing them, and who has access to them.

Well, we will turn to abortion now. As we noted last week, the Supreme Court will hear the case challenging the FDA’s approval of the abortion drug mifepristone on March 26. We’ll get to some of the amicus briefs that are flooding in, in a minute. But I think the most surprising thing that happened this week is that two of the journal studies that the appeals court relied on in challenging the FDA’s actions were officially retracted this week by the journal’s publisher, Sage.

In a very pointed statement, Sage editors wrote that it had been unaware that the authors, and in one case one of the peer reviewers, were all affiliated with anti-abortion advocacy organizations and that the articles were found by a new set of peer reviewers to have, “fundamental problems with study design and methodology, unjustified or incorrect factual assumptions, material errors in the author’s analysis of the data.” And a lot more problems I won’t get into, but we will post the link to the entire statement in our show notes.

Now, close listeners to the podcast might remember that we talked about this last August, when a pharmacy professor in Georgia alerted the journals to some of the substantive and political problems, and Sage printed something at the time called an expression of concern. Alice, these articles were cited many times in both the lower-court and the appeals-court rulings. What does it mean that they’ve been formally disavowed by their publisher?

Ollstein: It’s really hard to tell what it’s going to mean because we’re in an era where facts don’t always matter in the courts. I mean, we had recently a whole Supreme Court case about a wedding website designer that was based on facts that did not turn out to be true about their standing. The football coach who prayed on the 50-yard line turned out to not be a true story.

And so, it’s really hard to tell. And pro-abortion rights groups have been arguing that evidence cited by the lower court was not scientifically sound. And so, it’s this “flood the zone with competing studies.” And the average person is just confused and throws up their hands. So, in terms of how much it’ll matter, I’m not sure. You already have the groups in question behind the retracted study accusing the publisher of bias. I think this back-and-forth and finger-pointing will continue, and it’s unclear what effect it’ll actually have in court.

Pradhan: I think the thing that I find troubling about it is it’s … and it’s happened with other issues too. It certainly happened during the covid-19 pandemic, where people would say that there would be research or science via press release instead of academic research really undergoing the controls that it is meant to undergo before it’s released and published in a journal. And I hope at the very least that it leads to this, if we’re going to get some amount of good change, it’s that it really does reinforce the need for really rigorous checks, regardless of what the subject of the study is, because clearly these things, it has real consequences.

And frankly, I mean, look at one of the best-known examples of a retracted study which links vaccines to autism. I mean, that happened. It was widely discredited after the fact, and it is still doing harm in society, even though it’s been retracted and the researcher discredited. So, I think it really underscores the importance. I hope that frankly some of these journals get their act together before they publish things that … because it’s too little too late by the time that the damage has been done already.

Rovner: Yeah, I feel like I would say the judicial version of the journalistic “he said, she said.”

Ollstein: I mean, that’s such a good point by Rachana about how the damage is already done in the public understanding of it. But I also am pretty cynical about the ramifications in court specifically, particularly given the fact that the same lower court that cited these studies also cited things that weren’t peer-reviewed or published in medical journals at all. Things that were just these online surveys of self-reported problems with abortion pills. And so, there doesn’t seem to be a clear bar for scientific rigor in the courts.

Karlin-Smith: I was going to say that gets to this fundamental issue in this case, which is: Are judges capable of really assessing the kinds of evidence you need to make these decisions or whether we should trust the FDA and the people we’ve charged with that to do that? Because they know how to look at research papers and the range of research papers out there and evaluate what science is credible, what’s been replicated, look for these problems.

Because if you want to make an argument, you probably can always find one scientific paper or two scientific paper that might seem like it was published in some journal somewhere that can help support your point, but it’s being able to really understand how science works and back it up with that breadth of evidence and the accurate and really reliable evidence.

Rovner: Yeah. I would note that one of the amicus briefs came from a bunch of former heads of the FDA who are very concerned that judges are taking on, basically, the kind of scientific questions that have been ceded to the expertise of the FDA over many, many generations. I don’t remember another amicus brief like this coming from former FDA commissioners banding together. Have you seen this before?

Karlin-Smith: Yeah. I mean, I certainly can’t think of something like it, but I haven’t necessarily scoured the history books to make sure of it, but it is pretty unusual. I did actually note that [former President Donald] Trump’s two FDA commissioners are not among the alive possible FDA commissioners who could have joined in, that didn’t join in on this one, which is interesting.

Ollstein: Oh, I just think that we’re seeing a lot of the medical community that has previously tried to stay above the fray now feeling like this is such a threat to the practice of medicine and regulatory scientific bodies that they feel like they have to get involved, where they didn’t before. And now you’ve reported a lot on how much the AMA [American Medical Association] has changed over time.

But I think seeing these folks in the medical community that aren’t exactly waving a flag at the front of the abortion rights parade really speaking out about this, and it’s a really interesting shift.

Pradhan: It’s certainly a case that challenges the administrative state, if you will, right? Like the one about mifepristone, about FDA’s expertise in science and scientific background in assessing whether a drug should be approved or not.

But as you all know, there’s another case going before the Supreme Court that challenges what’s known as the Chevron doctrine, which is how the agencies are relied upon to interpret federal laws and court rulings, and it’s their expertise that is deferred to, that also is now, I think being questioned and very well could be undermined potentially next year. So, who else? I guess it’s either judges or lawmakers that are supposed to be the ones that truly know how to implement various laws, instead of the folks that are working at these agencies.

Rovner: As you say, this is a lot broader than just the abortion pill. One of the briefs that I didn’t expect to see came from the former secretaries of the Army, Navy, and Air Force who argued that restricting medication abortion would threaten military readiness by hurting recruitment and retainment and the ability for active women service members in states that ban abortion to basically be able to serve. I did not have that particular amicus on my bingo card, but, Alice, this is becoming a bigger issue. Right?

Ollstein: Well, it’s just interesting because I think about the Biden administration policy supporting service members traveling across state lines for an abortion if they’re stationed in a state where it’s now banned. And the administration has been defending that policy from attacks from Capitol Hill, et cetera, and saying, “Look, we’re not backing this policy because it’s some high-minded abortion right priority. We’re backing this because they think it’s good for the military itself.”

And so, I think this amicus brief is making that same case and saying, having tens of thousands of service members lose access to decision-making ability would really hurt the military. So, I think that’s an interesting argument. Again, like these medical groups, you don’t see the military making this kind of case very often and you might not see it under a different administration.

Rovner: Yeah. It’s yet another piece of this that’s flowing out. Well, not everything on abortion is happening in Washington. The states are still skirmishing over whether abortion questions should even appear on ballots this fall. The latest happened in Florida this week, where the Supreme Court there heard arguments about a ballot question that would broadly guarantee abortion rights in the state. Alice, you were watching that, yes?

Ollstein: Yeah. It was an interesting mixed bag because most of the current state Supreme Court was appointed by [Republican Gov.] Ron DeSantis. These are very conservative people, a lot of them are very openly anti-abortion, and were making that clear during the oral arguments, and they were repeating anti-abortion talking points about what the amendment would do. But at the same time, they seemed really skeptical of the state’s argument that they should block it and kill it.

They were saying, “Look, it’s not our job to decide whether this amendment is good or not. It’s our job to decide whether the language is deceptive or not, whether voters who go to vote on it will understand what they’re voting for and against.” And so, they had this whole analogy of, “Is this a wolf in sheep’s clothing or is it just a wolf?” They seem to be leaning towards “it’s just a wolf” and voters can decide for themselves if they think it’s good or bad.

Rovner: Well, my favorite fun fact out of this case yesterday is that one of the five Republican members of the seven-member Florida Supreme Court is Charles Kennedy, who, when he was serving in the House in the 1990s, was the first member of Congress to introduce a bill to ban “partial-birth” abortion. So, he was at the very, very forefront of that very, very heated debate for many years. And now he is on the Florida Supreme Court, and we will see what they say.

Do we have any idea when we’re expecting a decision? Obviously, ballots are going to have to be printed in the not-too-distant future.

Ollstein: Yes. So, the court has to rule before April 1, otherwise the ballot measure will automatically go forward. And so, they can either rule to block it and kill it, they can rule to uphold it, or they can do nothing and then it’ll just go forward on its own.

Pradhan: The thing that — what I keep thinking about too is so, OK, they’ve indicated that they have to rule, right, by April 1. But then we also have this separate pending matter of what is the status of the six-week ban that is still blocked currently? And I just keep wondering, I’m like, how much could change over the course of 2024? We still don’t have a decision on that, even though that’s been pending for much longer. No?

Rovner: Yeah. Where is the Florida six-week ban? It’s not in effect, right?

Ollstein: Yes. There was the hearing on the 15-week ban, and if that gets upheld, the six-week ban automatically goes into effect after a certain period of time. So, we’re waiting on a ruling on the 15-week ban, which will determine the fate of the six-week ban, and then the ballot measure could wipe out both, potentially.

Pradhan: Right. So, it’s very topsy-turvy.

Ollstein: It’s very simple, very simple.

Pradhan: Right. Yeah. I mean, even just the 15-week ban and the six-week ban, to me, at first it was counterintuitive to think, “Oh, so either both of them stand or neither of them do.” So, it seems like we could be in for many, many changes in Florida this year, but I’m very curious about when that is going to happen because it’s been much longer since … rather than the abortion rights ballot measure for this year.

Rovner: And meanwhile, I mean, Florida is a really key state in this whole issue because it’s one of the only states in the South where abortion is still available, right?

Ollstein: Right. And we saw how important it’s become in the data where the number of abortions taking place plummeted in so many states, but in Florida, they’ve actually gone up since Dobbs, even with the 15-week ban in place. A lot of that is people coming from surrounding states. And so, it is really pivotal, and I think that’s why you’re seeing these big national groups like Planned Parenthood really prioritizing it, and there’s so many different ballot measure fights going on, but I think you’re seeing a lot of resources go to Florida, in part for that reason.

Rovner: We will keep an eye on it. Well, we have not talked about Medicaid in a while, and conveniently, my KFF Health News colleague Phil Galewitz has an interesting story this week that halfway through the largest eligibility redetermination in history, Medicaid rolls nationwide are down net about 10 million people or at roughly the number that they were before the pandemic. Rachana, you spend a lot of time looking at Medicaid. Does that surprise you, that the rolls ended up where they were before?

Pradhan: I think, no, not necessarily. Our esteemed KFF colleague Larry Levitt put it really well in the story Phil wrote, which is that the rapid clip at which this is happening is obviously notable, right? It is not normal for how fast enrollment is declining.

I do think the thing that I wish we had, and we only, I think maybe from a state or two know this, but we certainly don’t have nationwide data and won’t for several years, but how many of these people are becoming uninsured? I think at the end of the day, that’s really what big picture-wise matters. Right? But I think certainly, I mean, the unwinding is still occurring. We’re still probably going to have disenrollments that will, I think at least through basically the first half of this year, certain states are still going to take that long. And so, we really won’t know the full picture for obviously a little bit, but I thought that Phil’s piece was really interesting and on point, for sure.

Rovner: Yeah. We talked about how many more people joined the exchanges this year, on now ACA [Affordable Care Act] coverage. Anecdotally, we know that a lot of those came from being disenrolled from Medicaid, and obviously Medicaid is always full of churn. People get jobs and they get job insurance, and they go on, and then other people lose jobs and they lose their job insurance and they qualify for Medicaid. So, there’s always a lot of ups and downs.

But I’m just wondering, the rolls had gotten so swell during the pandemic when states were not allowed to take people off, that I think it will be interesting that when this is all said and done, Medicaid rolls end up where you would’ve expected them to be had there not been a pandemic, right?

Pradhan: Right. I think that what’ll be interesting to see is, I mean, we have some sense of ACA marketplace enrollment, the way it increased this past open enrollment, but again, we don’t know if some of those Medicaid enrollees, how many of them have shifted to job-based plans, if they have at all, or if they’ve just fallen off the rolls entirely.

One of the other things I think about also is the macro-level picture, of course, is important and good, but knowing who has lost their coverage is also … and so, children, I think have been impacted quite a lot by these disenrollments, and so that’s certainly something to keep in mind and keep an eye on. Right?

Rovner: Yeah. And I know, I mean, the federal government obviously has, I think, more data than they’re sharing about this because we know they’ve quietly or not so quietly told some states that they wish they were doing things differently and they should do things differently. But I think they’re trying very hard not to politicize this. And so, I think it’s frustrating for people who are trying to follow it because we know that they know more than we know, and we would like to know some of the things that they know, but I guess we’re not going to find out, at least not right away.

Well, so remember that work requirement that Georgia got permission to put in, as opposed to just expanding Medicaid? Georgia, remember, is one of the 10 states that have yet to expand Medicaid under the Affordable Care Act. Well, now Georgia is suing the Biden administration to try to keep their experiment going, which seems like a lot of trouble for a program that has enrolled only 2,300 of a potential pool of 100,000 people. Why does Georgia think that extending its program is going to increase enrollment substantially? Clearly, this is not going over in a very big way for the work requirements. Alice, you’ve been our work-requirement person. I’ll bet you’re not surprised.

Ollstein: So, the state’s argument is that all of the back-and-forth with the administration before they launched this partial, limited, whatever you want to call it, expansion, they say that that didn’t give them enough time to successfully implement it and that they shouldn’t be judged on the small amount of people they’ve enrolled so far. They should be given more time to really make it a success.

We don’t have a ton of data of what it looks like when states really go all in on these work requirements, but what we have shows that it really limits enrollment and a lot of people who should qualify are falling through the cracks. So, I don’t know if more time would help here, in Georgia and in some other states that haven’t expanded yet. There’s a real tussle right now between the people who just want to take the federal help and just do a real, full expansion like so many other states have done, and those who want to put more of a conservative stamp on the idea and feel like they’re not just wholeheartedly embracing something that they railed against for so many years.

Rovner: Yeah. Just a gentle reminder that the majority of people on Medicaid either are working or cannot work or are taking care of someone who cannot work. And that in the few states that tried to implement work requirements, the problem wasn’t so much that they weren’t working, it’s that they were having trouble reporting their work hours, that that turned out to be a bigger issue than actually whether or not they were … the perception that, I guess, from some of these state leaders that people on Medicaid are just sitting at home and collecting their Medicaid, turns out not to be the case, but that doesn’t mean that people don’t get kicked off the program likely when they shouldn’t.

I mean, that’s what we saw, Alice, you were in … it was Arkansas, right, that tried to do this and it all blew up?

Ollstein: That’s right. And there were other factors there that made it harder for folks to use the program. But I mean, everywhere that’s tried this, it shows that the administrative burdens of having to report hours trip people up and make it so that people who are working still struggle to prove they’re working or to prove they’re working in the right way in order to qualify for insurance that they theoretically should be entitled to.

Rovner: Well, before we leave Medicaid for this week, I want to talk about the newest state trend, which is using Medicaid money to help pay for housing for people who are homeless or at risk of eviction. California is doing it, so are Arizona and Oregon; even Arkansas is joining the club. All of them encouraged by the Biden administration.

The idea is to keep people from ending up in places that are even more expensive for taxpayers, in hospitals or jails or nursing homes, and that so very many health problems cannot be addressed unless patients have a stable place to live. But pouring money earmarked for health services into housing is a really slippery slope, isn’t it? I mean, we obviously have a housing crisis, but it’s hard to feel like Medicaid’s going to be able to plug that hole very effectively.

Karlin-Smith: I feel like that’s where some of the debate is moving next, which is there’s certainly lots of evidence that shows how much being unhoused impacts somebody’s health and their life span and so forth. But state Medicaid programs have to balance their budget and are usually not unlimited. And for me, in following drugs, that’s been a big issue with some of the really new expensive drugs coming on the market is it’s not that Medicaid doesn’t necessarily want to cover it, it’s that if they cover it, they might have to cut some other health service somewhere else, which they also don’t want to cut.

So, I think maybe this evidence of the ability to improve health through housing might have to lead to thinking about, OK, how do we change our budgets or our systems to ensure we’re actually tackling that? But I’m not sure that long-term, unless we really expand the funding of Medicaid, you can really continue doing that and serve all the traditional health needs Medicaid serves.

Pradhan: Yeah, I mean, if you think about Medicaid, I mean, just going back to the bread and butter of reimbursement of providers. I mean, everyone knows that it’s bad, right? It’s too low, it’s lower than Medicare, it’s lower than commercial insurance, and it affects even a Medicaid enrollee’s ability to see a primary care doctor, specialists. I mean, because there are clinicians that will not accept Medicaid as a form of insurance because they lose too much money on it.

And so, I think this is, it’s interesting, I think there’s this big philosophical debate of, is this Medicaid’s problem? Should it be paying for this type of need when there are so many other, you could argue, unmet needs in the program that you could be spending money on? But these states are not necessarily doing that. And so, I think, obviously, I think it would help to have housing stability, but it, for me, raises these broader questions of, but look at all these other things. Like Sarah said, being able to afford drugs that are expensive, but also are quite effective potentially and could really help people. But they’re already scrambling to do those basic things and now they’re moving on to, is it a new shiny toy? Or, something that’s obviously important, but then you’re ignoring some of the other challenges that have existed for a long time.

Rovner: And housing is only one of these social determinants of health that people are trying to address. And it’s absolutely true. I mean, nobody suggests that not having housing and nutrition and lots of other things very much affect your health, and if people have them, they’re very much likely to do better health-wise. But whether that should all fall to the Medicaid program is something that I think is going to have to be sorted out.

Well, back here in Washington, Congress is having some kind of week, mostly not on health care. So, if you’re interested in the gory details, you’re going to have to find them someplace else. But in the midst of the chaos, the House yesterday did manage to pass a bill called the Protecting [Health] Care for [All] Patients Act [of 2022], which certainly sounds benign enough. Its purpose is to ban the use of a measurement called quality-adjusted life years or QALYs, as they’re known. But Sarah, this is way more controversial than it seems, right? Particularly given the bill passed on a party-line vote.

Karlin-Smith: To back up a little bit, quality-adjusted life years, or QALYs, it’s basically a way to figure out cost-effectiveness or what’s a fair price of a product based on the dollar amount that they’re saying it costs per year of quality of your life extended. So, it’s not just taking into account if your life’s extended, but the quality of your life during that time.

And a lot of people have trouble with that metric because they feel like it unfairly penalizes people with disabilities or conditions where the quality of your life might not seem quite the same as somebody who a drug can make you almost perfectly healthy, if that makes sense? And so actually, Democrats are fairly in alignment with Republicans on not being huge fans of the QALY, that particular measure. It’s actually already banned in Medicare, but they are concerned that the way Republicans drafted this bill, it could make it pretty much hard to use any kind of metric that tries to help programs, state agencies, the VA, figure out what’s a fair price to pay for a drug. And then you get into really difficult problems figuring out what to cover, how to negotiate with a drug company for that.

So, Democrats have actually been pushing Republicans to take out some language that might basically narrow the bill or ensure you could use some other measures that are similar to QALYs, but they argue is a bit fairer for the entire populace. So, something that potentially down the road there could be some bipartisan agreement to ban this measure. I think the concern from people who work in the health economist space is that it does make people, I think, uncomfortable thinking about placing this dollar value on life.

But the flip side is, is that again, every drug that saves your life, we can’t spend a billion dollars on it. Right? And so, we have to come up with some way to effectively figure out how to bargain and deal with the drugmakers to figure out what is a fair price for the system. And these are tools to do it, and they’re really not meant to penalize people on an individual basis, because, again, if the drug is priced way too high, regardless of how beneficial it is, the system and you are not going to be able to afford it. It’s a way of figuring out, OK, what is a fair price based on what this does for you? And also then incentivize drug companies to develop drugs that at the price are really a good benefit for the price.

Rovner: It’s so infuriating because I mean, Congress and health policy experts and economists have been talking about cost-effectiveness measures for 30 years, and this was one of the few that there were, and obviously everybody agrees that it is far from perfect and there are a lot of issues. But on the other side, you don’t want to say, “Well, we’re just not going to measure cost-effectiveness in deciding what is allowed.” Which essentially is where we’ve been and what makes our system so expensive, right?

Karlin-Smith: Right. I mean, you can imagine, like, if you thought about other things that are crucial in your life, like I sometimes think about it, it makes it easier if I think about water, OK, everybody needs water to live. If we let the water utilities charge us $100,000 for every jug of water, we would get into problems.

So again, I think the people that use these metrics and try and think about it, they’re not trying to penalize people or put a price on life in the way I think the politicians use it to get out of this. They’re trying to figure out, how do we fairly allocate resources in society in an equitable way? But it can be easily politicized because it is so hard to talk about these issues when you’re thinking about your health care and what you have access to or not.

Rovner: We will watch this as it moves through what I’m calling the chaotic Congress. Turning to “This Week in Health Misinformation,” we have a story from KFF Health News’ Katheryn Houghton for PolitiFact that earned a rare “Pants on Fire!” rating. It seems that a fundraising ad for Republican congressman Matt Rosendale of Montana, who’s about to become Senate candidate Matt Rosendale of Montana, claims that former NIH [National Institutes of Health] official Tony Fauci brought covid to Montana a year before the pandemic. In other forums, Rosendale has charged that an NIH researcher at Rocky Mountain Laboratories infected bats with covid from China. It actually turns out that the laboratory was studying another coronavirus entirely, not the coronavirus that causes covid, the covid that we think of, and that the virus wasn’t actually shipped, but rather its molecular sequence was provided. To quote from this story, “Rosendale’s claim is wrong about when the scientists began their work, what they were studying, and where they got the materials.” But other than that, these kinds of scary claims keep getting used because they work in campaigns. Right?

Karlin-Smith: It taps into this theme that we’ve seen that Republicans on the Hill have certainly been tapping into over the past year or two of whether covid came from a lab and what funding from the U.S. to China contributed to that, and what do people in the U.S., particularly connected to Democrats, know that they’re not saying.

So, even though as you start to dig into this story and you see every level how it’s just not true, the surface of it, people have already been primed to believe that this is occurring, and it’s been how we do this sort of research in this country has already been politicized. So, if you just see a clip, people are easily persuaded.

Rovner: Yes. I think it was Alice, we started out by saying we’ve become a fact-free society. I think this is another example of it. All right, well that is this week’s news.

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. Rachana, you got the first one in this week. Why don’t you go first?

Pradhan: Oh, sure. The story I wanted to highlight was from North Carolina Health News. It is focusing on a very large health system known as Atrium Health, which is based in Charlotte, North Carolina. And basically, it’s really interesting, it talks about how Atrium actually operates under a public hospital authority. So, it enjoys certain benefits of being a public or government entity, including they avoid millions in state and federal taxes. They have the power of eminent domain, and they are not subject to antitrust regulations.

And again, this is one of the largest health systems in North Carolina, but it’s playing it both ways. Right? It tries to use the advantages of being a public entity like the ones I just named, but when it comes to other requirements to have checks and balances in government, as we do with various levels of government, like having open public meetings, being able to ask for public comment at these meetings and the like, Atrium does not behave like a government entity at all.

I would also note, as an aside, Atrium was, in the past, one of the most litigious hospital systems in North Carolina. They sued their patients for outstanding medical debt until they ended the practice last year. And so, it’s a really interesting story. So, I enjoyed it.

Rovner: It was a really interesting story. Sarah.

Karlin-Smith: I looked at a piece in the Atlantic from KFF [Health] News editor Elisabeth Rosenthal, “GoFundMe Is a Health-Care Utility Now,” and she tracks the rise of people in the U.S. using GoFundMe to help pay for medical bills, which I think, at first, maybe doesn’t seem so bad if people are having another way to help them pay for medical expenses. But she shows how it’s a band-aid for much bigger problems in an unfair and inequitable system. And, really, also documents how it tends to perpetuate the already existing socioeconomic disparities.

So, if you’re somebody who’s famous or has a lot of friends or just has a lot of friends with money, you’re more likely to actually have your crowdfunding campaign succeed than not. And talking about how health systems are actually directing patients there to fund their medical debt. So, it’s just one of those trends that highlights the state of where the U.S. health system is and that our health insurance system, which is in theory supposed to do what GoFundMe is now an extra band-aid for, which is, you pay money over time so that when you are sick, you’re not hit with these huge bills. But that obviously isn’t the case for many people.

Rovner: Indeed. Alice.

Ollstein: So, I have a piece from Stat’s Usha Lee McFarling, and it’s about the FDA coming under pressure to act more quickly now that they know that pulse oximeters, which were really key during the worst months of the covid pandemic for detecting who needed to be hospitalized, that they don’t work on people of color, they don’t work as well on detecting blood oxygen.

And so, it’s a really fascinating story about, now that we know this, how quickly are regulators going to act and how can they act? But also going forward, this is what happens when there’s not enough diversity in clinical trials. You don’t find out about really troubling racial disparities in efficacy until it’s too late and a lot of people have suffered. So, really curious about what reforms come out of this.

Rovner: Yeah, me too. Well, my extra credit this week is from the Alabama Daily News, and it comes with the very vanilla-sounding headline “Alabama Lawmakers Briefed on New ‘ALL Health’ Insurance Coverage Expansion Plan,” by Alexander Willis. Now, Alabama is also one of the 10 remaining states that have not expanded Medicaid under the Affordable Care Act, much to the chagrin of the state’s hospitals, which would likely have to provide much less free care if more low-income people actually had insurance, even Medicaid, which, as Rachana points out, doesn’t pay that well. The plan put forward by the state hospital association would create a public-private partnership where those who are in the current coverage gap, the ones who earn too much for Medicaid now, but not enough to qualify for Affordable Care Act subsidies, would get full Medicaid benefits delivered through a private insurer. Ironically, this is basically how neighboring Arkansas, another red state, initially expanded Medicaid back in 2013. I did go and look this up when this happened. And it wasn’t even new then. But still, the plan could provide a quarter of a million people in Alabama with insurance at apparently no additional cost to the state for at least the first five years and maybe the first 10. So, another place where we will watch that space.

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 and @julie.rovner at Threads. Sarah, where are you these days?

Karlin-Smith: I’m on Twitter a little bit, @SarahKarlin. And Bluesky, I’m @sarahkarlin-smith, other platforms as well.

Rovner: Alice?

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

Rovner: Rachana?

Pradhan: I’m @rachanadpradhan on X, although my presence lately has been a little lacking.

Rovner: Well, you can definitely find all of us. And we will be back in your feed next week. Until then, be healthy.

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The number of older adults with disabilities — difficulty with walking, seeing, hearing, memory, cognition, or performing daily tasks such as bathing or using the bathroom — will soar in the decades ahead, as baby boomers enter their 70s, 80s, and 90s.

But the health care system isn’t ready to address their needs.

That became painfully obvious during the covid-19 pandemic, when older adults with disabilities had trouble getting treatments and hundreds of thousands died. Now, the Department of Health and Human Services and the National Institutes of Health are targeting some failures that led to those problems.

One initiative strengthens access to medical treatments, equipment, and web-based programs for people with disabilities. The other recognizes that people with disabilities, including older adults, are a separate population with special health concerns that need more research and attention.

Lisa Iezzoni, 69, a professor at Harvard Medical School who has lived with multiple sclerosis since her early 20s and is widely considered the godmother of research on disability, called the developments “an important attempt to make health care more equitable for people with disabilities.”

“For too long, medical providers have failed to address change in society, changes in technology, and changes in the kind of assistance that people need,” she said.

Among Iezzoni’s notable findings published in recent years:

Most doctors are biased. In survey results published in 2021, 82% of physicians admitted they believed people with significant disabilities have a worse quality of life than those without impairments. Only 57% said they welcomed disabled patients.

“It’s shocking that so many physicians say they don’t want to care for these patients,” said Eric Campbell, a co-author of the study and professor of medicine at the University of Colorado.

While the findings apply to disabled people of all ages, a larger proportion of older adults live with disabilities than younger age groups. About one-third of people 65 and older — nearly 19 million seniors — have a disability, according to the Institute on Disability at the University of New Hampshire.

Doctors don’t understand their responsibilities. In 2022, Iezzoni, Campbell, and colleagues reported that 36% of physicians had little to no knowledge of their responsibilities under the 1990 Americans With Disabilities Act, indicating a concerning lack of training. The ADA requires medical practices to provide equal access to people with disabilities and accommodate disability-related needs.

Among the practical consequences: Few clinics have height-adjustable tables or mechanical lifts that enable people who are frail or use wheelchairs to receive thorough medical examinations. Only a small number have scales to weigh patients in wheelchairs. And most diagnostic imaging equipment can’t be used by people with serious mobility limitations.

Iezzoni has experienced these issues directly. She relies on a wheelchair and can’t transfer to a fixed-height exam table. She told me she hasn’t been weighed in years.

Among the medical consequences: People with disabilities receive less preventive care and suffer from poorer health than other people, as well as more coexisting medical conditions. Physicians too often rely on incomplete information in making recommendations. There are more barriers to treatment and patients are less satisfied with the care they do get.

Egregiously, during the pandemic, when crisis standards of care were developed, people with disabilities and older adults were deemed low priorities. These standards were meant to ration care, when necessary, given shortages of respirators and other potentially lifesaving interventions.

There’s no starker example of the deleterious confluence of bias against seniors and people with disabilities. Unfortunately, older adults with disabilities routinely encounter these twinned types of discrimination when seeking medical care.

Such discrimination would be explicitly banned under a rule proposed by HHS in September. For the first time in 50 years, it would update Section 504 of the Rehabilitation Act of 1973, a landmark statute that helped establish civil rights for people with disabilities.

The new rule sets specific, enforceable standards for accessible equipment, including exam tables, scales, and diagnostic equipment. And it requires that electronic medical records, medical apps, and websites be made usable for people with various impairments and prohibits treatment policies based on stereotypes about people with disabilities, such as covid-era crisis standards of care.

“This will make a really big difference to disabled people of all ages, especially older adults,” said Alison Barkoff, who heads the HHS Administration for Community Living. She expects the rule to be finalized this year, with provisions related to medical equipment going into effect in 2026. Medical providers will bear extra costs associated with compliance.

Also in September, NIH designated people with disabilities as a population with health disparities that deserves further attention. This makes a new funding stream available and “should spur data collection that allows us to look with greater precision at the barriers and structural issues that have held people with disabilities back,” said Bonnielin Swenor, director of the Johns Hopkins University Disability Health Research Center.

One important barrier for older adults: Unlike younger adults with disabilities, many seniors with impairments don’t identify themselves as disabled.

“Before my mom died in October 2019, she became blind from macular degeneration and deaf from hereditary hearing loss. But she would never say she was disabled,” Iezzoni said.

Similarly, older adults who can’t walk after a stroke or because of severe osteoarthritis generally think of themselves as having a medical condition, not a disability.

Meanwhile, seniors haven’t been well integrated into the disability rights movement, which has been led by young and middle-aged adults. They typically don’t join disability-oriented communities that offer support from people with similar experiences. And they don’t ask for accommodations they might be entitled to under the ADA or the 1973 Rehabilitation Act.

Many seniors don’t even realize they have rights under these laws, Swenor said. “We need to think more inclusively about people with disabilities and ensure that older adults are fully included at this really important moment of change.”

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

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

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

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

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

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

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

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

What Other Nations Provide

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

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

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

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

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

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

Insurance Policies Debated

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

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

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

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

Pleas for More Immigrant Workers

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

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

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

Federal Fixes Sought

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

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

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

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

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

Questioning the Value of Life-Prolonging Procedures

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

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

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

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

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

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

Considering ‘Assisted Dying’

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

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

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

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At no point along his three-year path to earning a degree in physical therapy has Matthew Lee worried about getting a job.

Being able to make a living off that degree? That’s a different question — and the answer is affecting the supply of physical therapists across the nation: The cost of getting trained is out of proportion to the pay.

“There’s definitely a shortage of PTs. The jobs are there,” said Lee, a student at California State University-Sacramento who is on track to receive his degree in May. “But you may be starting out at $80,000 while carrying up to $200,000 in student debt. It’s a lot to consider.”

As many patients seeking an appointment can attest, the nationwide shortage of PTs is real. According to survey data collected by the American Physical Therapy Association, the job vacancy rate for therapists in outpatient settings last year was 17%.

Wait times are generally long across the nation, as patients tell of waiting weeks or even months for appointments while dealing with ongoing pain or post-surgical rehab. But the crunch is particularly acute in rural areas and places with a high cost of living, like California, which has a lower ratio of therapists to residents — just 57 per 100,000, compared with the national ratio of 72 per 100,000, according to the association.

The reasons are multifold. The industry hasn’t recovered from the mass defection of physical therapists who fled as practices closed during the pandemic. In 2021 alone, more than 22,000 PTs — almost a tenth of the workforce — left their jobs, according to a report by the health data analytics firm Definitive Healthcare.

And just as baby boomers age into a period of heavy use of physical therapy, and covid-delayed procedures like knee and hip replacements are finally scheduled, the economics of physical therapy are shifting. Medicare, whose members make up a significant percentage of many PT practices’ clients, has cut reimbursement rates for four years straight, and the encroachment of private equity firms — with their bottom-line orientation — means many practices aren’t staffing adequately.

According to APTA, 10 companies, including publicly held and private equity-backed firms, now control 20% of the physical therapy market. “What used to be small practices are often being bought up by larger corporate entities, and those corporate entities push productivity and become less satisfying places to work,” said James Gordon, chair of the Division of Biokinesiology and Physical Therapy at the University of Southern California.

There’s a shortage of physical therapists in all settings, including hospitals, clinics, and nursing homes, and it’s likely to continue for the foreseeable future, said Justin Moore, chief executive of the physical therapy association. “Not only do we have to catch up on those shortages, but there are great indicators of increasing demand for physical therapy,” he said.

The association is trying to reduce turnover among therapists, and is lobbying Congress to stop cutting Medicare reimbursement rates. The Centers for Medicare & Medicaid Services plans a 3.4% reduction for 2024 to a key metric that governs pay for physical therapy and other health care services. According to the association, that would bring the cuts to a total of 9% over four years.

Several universities, meanwhile, have ramped up their programs — some by offering virtual classes, a new approach for such a hands-on field — to boost the number of graduates in the coming years.

“But programs can’t just grow overnight,” said Sharon Gorman, interim chair of the physical therapy program at Oakland-based Samuel Merritt University, which focuses on training health care professionals. “Our doctoral accreditation process is very thorough. I have to prove I have the space, the equipment, the clinical sites, the faculty to show that I’m not just trying to take in more tuition dollars.”

All of this also comes at a time when the cost of obtaining a physical therapy doctorate, which typically takes three years of graduate work and is required to practice, is skyrocketing. Student debt has become a major issue, and salaries often aren’t enough to keep therapists in the field.

According to the APTA’s most recent published data, median annual wages range from $88,000 to $101,500. The association said wages either met or fell behind the rate of inflation between 2016 and 2021 in most regions.

A project underway at the University of Iowa aims to give PT students more transparency about tuition and other costs across programs. According to an association report from 2020, at least 80% of recent physical therapy graduates carried educational debt averaging roughly $142,000.

Gordon said USC, in Los Angeles’ urban core, has three PT clinics and 66 therapists on campus, several of whom graduated from the school’s program. “But even with that, it’s a challenge,” he said. “It’s not just hard to find people, but people don’t stay, and the most obvious reason is that they don’t get paid enough relative to the cost of living in this area.”

Fewer therapists plus growing demand equals long waits. When Susan Jones, a Davis, California, resident, experienced pain in her back and neck after slipping on a wet floor in early 2020, she went to her doctor and was referred for physical therapy. About two months later, she said, she finally got an appointment at an outpatient clinic.

“It was almost like the referral got lost. I was going back and forth, asking, ‘What’s going on?’” said Jones, 57. Once scheduled, her first appointment felt rushed, she said, with the therapist saying he could not identify an issue despite her ongoing pain. After one more session, Jones paid out-of-pocket to see a chiropractor. She said she’d be hesitant to try for a physical therapy referral in the future, in part because of the wait.

Universities and PT programs graduate about 12,000 therapists a year, Moore said, and representatives of several schools told KFF Health News they’re studying whether and how to expand. In 2018, USC added a hybrid model in which students learn mostly online, then travel to campus twice a semester for about a week at a time for hands-on instruction and practice.

That bumped USC’s capacity from 100 students a year to 150, and Gordon said many of the hybrid students’ professional skills are indistinguishable from those of students on campus full time.

Natalia Barajas received her PT doctorate from USC last year and was recently hired at a clinic in nearby Norwalk, with a salary of $95,000, a signing bonus, and the opportunity to earn more in incentives.

She’s also managing a lot of debt. Three years of tuition for the USC physical therapy program comes to more than $211,000, and Barajas said she owes $170,000 in student loans.

“If it were about money alone, I probably would have shifted to something else a while ago,” Barajas said. “I’m OK with my salary. I chose to do this. But it might not be the perfect situation for everybody.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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

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This story can be republished for free (details).

Assisted living centers have become an appealing retirement option for hundreds of thousands of boomers who can no longer live independently, promising a cheerful alternative to the institutional feel of a nursing home.

But their cost is so crushingly high that most Americans can’t afford them.

What to Know About Assisted Living

The facilities can look like luxury apartments or modest group homes and can vary in pricing structures. Here’s a guide.

Read More

These highly profitable facilities often charge $5,000 a month or more and then layer on fees at every step. Residents’ bills and price lists from a dozen facilities offer a glimpse of the charges: $12 for a blood pressure check; $50 per injection (more for insulin); $93 a month to order medications from a pharmacy not used by the facility; $315 a month for daily help with an inhaler.

The facilities charge extra to help residents get to the shower, bathroom, or dining room; to deliver meals to their rooms; to have staff check-ins for daily “reassurance” or simply to remind residents when it’s time to eat or take their medication. Some even charge for routine billing of a resident’s insurance for care.

“They say, ‘Your mother forgot one time to take her medications, and so now you’ve got to add this on, and we’re billing you for it,’” said Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care, a nonprofit.

About 850,000 older Americans reside in assisted living facilities, which have become one of the most lucrative branches of the long-term care industry that caters to people 65 and older. Investors, regional companies, and international real estate trusts have jumped in: Half of operators in the business of assisted living earn returns of 20% or more than it costs to run the sites, an industry survey shows. That is far higher than the money made in most other health sectors.

Rents are often rivaled or exceeded by charges for services, which are either packaged in a bundle or levied à la carte. Overall prices have been rising faster than inflation, and rent increases since the start of last year have been higher than at any previous time since at least 2007, according to the National Investment Center for Seniors Housing & Care, which provides data and other information to companies.

There are now 31,000 assisted living facilities nationwide — twice the number of skilled nursing homes. Four of every five facilities are run as for-profits. Members of racial or ethnic minority groups account for only a tenth of residents, even though they make up a quarter of the population of people 65 or older in the United States.

A public opinion survey conducted by KFF found that 83% of adults said it would be impossible or very difficult to pay $60,000 a year for an assisted living facility. Almost half of those surveyed who either lived in a long-term care residence or had a loved one who did encountered unexpected add-on fees for things they assumed were included in the price.

Assisted living is part of a broader affordability crisis in long-term care for the swelling population of older Americans. Over the past decade, the market for long-term care insurance has virtually collapsed, covering just a tiny portion of older people. Home health workers who can help people stay safely in their homes are generally poorly paid and hard to find.

And even older people who can afford an assisted living facility often find their life savings rapidly drained.

Unlike most residents of nursing homes, where care is generally paid for by Medicaid, the federal-state program for the poor and disabled, assisted living residents or their families usually must shoulder the full costs. Most centers require those who can no longer pay to move out.

The industry says its pricing structures pay for increased staffing that helps the more infirm residents and avoids saddling others with costs of services they don’t need.

Prices escalate greatly when a resident develops dementia or other serious illnesses. At one facility in California, the monthly cost of care packages for people with dementia or other cognitive issues increased from $1,325 for those needing the least amount of help to $4,625 as residents’ needs grew.

“It’s profiteering at its worst,” said Mark Bonitz, who explored multiple places in Minnesota for his mother, Elizabeth. “They have a fixed amount of rooms,” he said. “The way you make the most money is you get so many add-ons.” Last year, he moved his mother to a nonprofit center, where she lived until her death in July at age 96.

LaShuan Bethea, executive director of the National Center for Assisted Living, a trade association of owners and operators, said the industry would require financial support from the government and private lenders to bring prices down.

“Assisted living providers are ready and willing to provide more affordable options, especially for a growing elderly population,” Bethea said. “But we need the support of policymakers and other industries.” She said offering affordable assisted living “requires an entirely different business model.”

Others defend the extras as a way to appeal to the waves of boomers who are retiring. “People want choice,” said Beth Burnham Mace, a special adviser for the National Investment Center for Seniors Housing & Care. “If you price it more à la carte, you’re paying for what you actually desire and need.”

Yet residents don’t always get the heightened attention they paid for. Class-action lawsuits have accused several assisted living chains of failing to raise staffing levels to accommodate residents’ needs or of failing to fulfill billed services.

“We still receive many complaints about staffing shortages and services not being provided as promised,” said Aisha Elmquist, until recently the deputy ombudsman for long-term care in Minnesota, a state-funded advocate. “Some residents have reported to us they called 911 for things like getting in and out of bed.”

‘Can You Find Me a Money Tree?’

Florence Reiners, 94, adores living at the Waters of Excelsior, an upscale assisted living facility in the Minneapolis suburb of Excelsior. The 115-unit building has a theater, a library, a hair salon, and a spacious dining room.

“The windows, the brightness, and the people overall are very cheerful and very friendly,” Reiners, a retired nursing assistant, said. Most important, she was just a floor away from her husband, Donald, 95, a retired water department worker who served in the military after World War II and has severe dementia.

She resisted her children’s pleas to move him to a less expensive facility available to veterans.

Reiners is healthy enough to be on a floor for people who can live independently, so her rent is $3,330 plus $275 for a pendant alarm. When she needs help, she’s billed an exact amount, like a $26.67 charge for the 31 minutes an aide spent helping her to the bathroom one night.

Her husband’s specialty care at the facility cost much more: $6,150 a month on top of $3,825 in rent.

Month by month, their savings, mainly from the sale of their home, and monthly retirement income of $6,600 from Social Security and his municipal pension, dwindled. In three years, their assets and savings dropped to about $300,000 from around $550,000.

Her children warned her that she would run out of money if her health worsened. “She about cried because she doesn’t want to leave her community,” Anne Palm, one of her daughters, said.

In June, they moved Donald Reiners to the VA home across the city. His care there costs $3,900 a month, 60% less than at the Waters. But his wife is not allowed to live at the veterans’ facility.

After nearly 60 years together, she was devastated. When an admissions worker asked her if she had any questions, she answered, “Can you find me a money tree so I don’t have to move him?”

Heidi Elliott, vice president for operations at the Waters, said employees carefully review potential residents’ financial assets with them, and explain how costs can increase over time.

“Oftentimes, our senior living consultants will ask, ‘After you’ve reviewed this, Mr. Smith, how many years do you think Mom is going to be able to, to afford this?’” she said. “And sometimes we lose prospects because they’ve realized, ‘You know what? Nope, we don’t have it.’”

Potential Buyers From the Bahamas

For residents, the median annual price of assisted living has increased 31% faster than inflation, nearly doubling from 2004 to 2021, to $54,000, according to surveys by the insurance firm Genworth. Monthly fees at memory care centers, which specialize in people with dementia and other cognitive issues, can exceed $10,000 in areas where real estate is expensive or the residents’ needs are high.

Diane Lepsig, president of CarePatrol of Bellevue-Eastside, in the Seattle suburbs, which helps place people, said that she has warned those seeking advice that they should expect to pay at least $7,000 a month. “A million dollars in assets really doesn’t last that long,” she said.

Prices rose even faster during the pandemic as wages and supply costs grew. Brookdale Senior Living, one of the nation’s largest assisted living owners and operators, reported to stockholders rate increases that were higher than usual for this year. In its assisted living and memory care division, Brookdale’s revenue per occupied unit rose 9.4% in 2023 from 2022, primarily because of rent increases, financial disclosures show.

In a statement, Brookdale said it worked with prospective residents and their families to explain the pricing and care options available: “These discussions begin in the initial stages of moving in but also continue throughout the span that one lives at a community, especially as their needs change.”

Many assisted living facilities are owned by real estate investment trusts. Their shareholders expect the high returns that are typically gained from housing investments rather than the more marginal profits of the heavily regulated health care sector. Even during the pandemic, earnings remained robust, financial filings show.

Ventas, a publicly traded real estate investment trust, reported earning revenues in the third quarter of this year that were 24% above operating costs from its investments in 576 senior housing properties, which include those run by Atria Senior Living and Sunrise Senior Living.

Ventas said the prices for its services were affordable. “In markets where we operate, on average it costs residents a comparable amount to live in our communities as it does to stay in their own homes and replicate services,” said Molly McEvily, a spokesperson.

In the same period, Welltower, another large real estate investment trust, reported a 24% operating margin from its 883 senior housing properties, which include ones operated by Sunrise‌, Atria, Oakmont Management Group, and Belmont Village.‌ Welltower did not respond‌‌ to requests for comment.

The median operating margin for assisted living facilities in 2021 was 23% if they offered memory care and 20% if they didn’t, according to David Schless, chief executive of the American Seniors Housing Association, a trade group that surveys the industry each year.

Bethea said those returns could be invested back into facilities’ services, technology, and building updates. “This is partly why assisted living also enjoys high customer satisfaction rates,” she said.

Brandon Barnes, an administrator at a family business that owns three small residences in Esko, Minnesota, said he and other small operators had been approached by brokers for companies, including one based in the Bahamas. “I don’t even know how you’d run them from that far away,” he said.

Rating the Cost of a Shower, on a Point Scale

To consistently get such impressive returns, some assisted living facilities have devised sophisticated pricing methods. Each service is assigned points based on an estimate of how much it costs in extra labor, to the minute. When residents arrive, they are evaluated to see what services they need, and the facility adds up the points. The number of points determines which tier of services you require; facilities often have four or five levels of care, each with its own price.

Charles Barker, an 81-year-old retired psychiatrist with Alzheimer’s, moved into Oakmont of Pacific Beach, a memory care facility in San Diego, in November 2020. In the initial estimate, he was assigned 135 points: 5 for mealtime reminders; 12 for shaving and grooming reminders; 18 for help with clothes selection twice a day; 36 to manage medications; and 30 for the attention, prompting, and redirection he would need because of his dementia, according to a copy of his assessment provided by his daughter, Celenie Singley.

Barker’s points fell into the second-lowest of five service levels, with a charge of $2,340 on top of his $7,895 monthly rent.

Singley became distraught over safety issues that she said did not seem as important to Oakmont as its point system. She complained in a May 2021 letter to Courtney Siegel, the company’s chief executive, that she repeatedly found the doors to the facility, located on a busy street, unlocked — a lapse at memory care centers, where secured exits keep people with dementia from wandering away. “Even when it’s expensive, you really don’t know what you’re getting,” she said in an interview.

Singley, 50, moved her father to another memory care unit. Oakmont did not respond to requests for comment.

Other residents and their families brought a class-action lawsuit against Oakmont in 2017 that said the company, an assisted living and memory care provider based in Irvine, California, had not provided enough staffing to meet the needs of residents it identified through its own assessments.

Jane Burton-Whitaker, a plaintiff who moved into Oakmont of Mariner Point in Alameda, California, in 2016, paid $5,795 monthly rent and $270 a month for assistance with her urinary catheter, but sometimes the staff would empty the bag just once a day when it required multiple changes, the lawsuit said.

She paid an additional $153 a month for checks of her “fragile” skin “up to three times a day, but most days staff did not provide any skin checks,” according to the lawsuit. (Skin breakdown is a hazard for older people that can lead to bedsores and infections.) Sometimes it took the staff 45 minutes to respond to her call button, so she left the facility in 2017 out of concern she would not get attention should she have a medical emergency, the lawsuit said.

Oakmont paid $9 million in 2020 to settle the class-action suit and agreed to provide enough staffing, without admitting fault.

Similar cases have been brought against other assisted living companies. In 2021, Aegis Living, a company based in Bellevue, Washington, agreed to a $16 million settlement in a case claiming that its point system — which charged 64 cents per point per day — was “based solely on budget considerations and desired profit margins.” Aegis did not admit fault in the settlement or respond to requests for comment.

When the Money Is Gone

Jon Guckenberg’s rent for a single room in an assisted living cottage in rural Minnesota was $4,140 a month before adding in a raft of other charges.

The facility, New Perspective Cloquet, charged him $500 to reserve a spot and a $2,000 “entrance fee” before he set foot inside two years ago. Each month, he also paid $1,080 for a care plan that helped him cope with bipolar disorder and kidney problems, $750 for meals, and another $750 to make sure he took his daily medications. Cable service in his room was an extra $50 a month.

A year after moving in, Guckenberg, 83, a retired pizza parlor owner, had run through his life’s savings and was put on a state health plan for the poor.

Doug Anderson, a senior vice president at New Perspective, said in a statement that “the cost and complexity of providing care and housing to seniors has increased exponentially due to the pandemic and record-high inflation.”

In one way, Guckenberg has been luckier than most people who run out of money to pay for their care. His residential center accepts Medicaid to cover the health services he receives.

Most states have similar programs, though a resident must be frail enough to qualify for a nursing home before Medicaid will cover the health care costs in an assisted living facility. But enrollment is restricted. In 37 states, people are on waiting lists for months or years.

“We recognize the current system of having residents spend down their assets and then qualify for Medicaid in order to stay in their assisted living home is broken,” said Bethea, with the trade association. “Residents shouldn’t have to impoverish themselves in order to continue receiving assisted living care.”

Only 18% of residential care facilities agree to take Medicaid payments, which tend to be lower than what they charge self-paying clients, according to a federal survey of facilities. And even places that accept Medicaid often limit coverage to a minority of their beds.

For those with some retirement income, Medicaid isn’t free. Nancy Pilger, Guckenberg’s guardian, said that he was able to keep only about $200 of his $2,831 monthly retirement income, with the rest going to paying rent and a portion of his costs covered by the government.

In September, Guckenberg moved to a nearby assisted living building run by a nonprofit. Pilger said the price was the same. But for other residents who have not yet exhausted their assets, Guckenberg’s new home charges $12 a tray for meal delivery to the room; $50 a month to bill a person’s long-term care insurance plan; and $55 for a set of bed rails.

Even after Guckenberg had left New Perspective, however, the company had one more charge for him: a $200 late payment fee for money it said he still owed.

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

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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.

Congress narrowly avoided a federal government shutdown for the second time in as many months, as House Democrats provided the needed votes for new House Republican Speaker Mike Johnson to avoid his first legislative catastrophe of his brief tenure. But funding the federal government won’t get any easier when the latest temporary patches expire in early 2024. It seems House Republicans have not yet accepted that they cannot accomplish the steep spending cuts they want as long as the Senate and the White House are controlled by Democrats.

Meanwhile, a pair of investigations unveiled this week underscored the difficulty of obtaining needed long-term care for seniors. One, from KFF Health News and The New York Times, chronicles the financial toll on families for people who need help for activities of daily living. The other, from Stat, details how some insurance companies are using artificial intelligence algorithms to deny needed rehabilitation care for Medicare patients.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs of Stat, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine, and Alice Miranda Ollstein of Politico.

Panelists

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Among the takeaways from this week’s episode:

• Congress passed a two-part continuing resolution this week that will prevent the federal government from shutting down when the current CR expires Nov. 18 at 12:01 a.m. The new measure extends some current spending levels, including funding for the FDA, through Jan. 19. The rest of federal agencies, including most of the Department of Health and Human Services, are extended to Feb. 2.
• House Speaker Mike Johnson (R-La.) has said he wants to use the next two months to finish work on individual appropriations bills, none of which have passed both the House and Senate so far. The problem: They would deeply cut many popular federal programs. They also are full of changes to abortion restrictions and transgender policies, highlighting the split between the GOP caucus’ far-right wing and its more moderate members.
• In the wake of abortion rights successes in passing abortion rights ballot initiatives, new efforts are taking shape in Ohio and Michigan among state lawmakers who are arguing that when Dobbs turned this decision back to states, it meant to the state legislatures — not to the courts or voters. Most experts agree the approach is unlikely to prevail. Still, it highlights continuing efforts to change the rules surrounding this polarized issue.
• Sen. Tim Scott (R-S.C.) — who was the only remaining Republican presidential candidate pushing for a national, 15-week abortion ban — suspended his campaign last week. He, along with former Vice President Mike Pence, who bowed out of the race at the end of October, were the field’s strongest anti-abortion candidates. This seems to suggest that the 15-week ban is not drawing voter support, even among Republicans. Meanwhile, former President Donald Trump, the GOP’s front-runner by miles, continues to be willing to play both sides of the abortion debate.
• Amid increasing concern about the use of artificial intelligence in health care, a California class-action lawsuit charges that UnitedHealth Group is using algorithms to deny rehabilitation care to enrollees in its Medicare Advantage program. The suit comes in the wake of an investigation by Stat into insurer requirements that case managers hew to the AI estimates of how long the company would pay for rehabilitation care, regardless of the patient’s actual medical situation.
• More than 10 million people have lost Medicaid coverage since states began reviewing eligibility earlier in the year. Advocates for Medicaid patients worry that the Biden administration has not done enough to ensure that people who are still eligible for the program — particularly children — are not mistakenly terminated.

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

Julie Rovner: KFF Health News’ “How Lawmakers in Texas and Florida Undermine Covid Vaccination Efforts,” by Amy Maxmen.

Alice Miranda Ollstein: The New York Times’ “They Wanted to Get Sober. They Got a Nightmare Instead,” by Jack Healy.

Rachel Cohrs: Stat’s “UnitedHealth Pushed Employees to Follow an Algorithm to Cut Off Medicare Patients’ Rehab Care,” by Casey Ross and Bob Herman.

Joanne Kenen: ProPublica’s “Mississippi Jailed More Than 800 People Awaiting Psychiatric Treatment in a Year. Just One Jail Meets State Standards,” by Isabelle Taft, Mississippi Today.

Also mentioned in this week’s episode:

• KFF Health News’ “Facing Financial Ruin as Costs Soar for Elder Care,” by Reed Abelson, The New York Times, and Jordan Rau.
• JAMA Internal Medicine’s “Excess Death Rates for Republican and Democratic Registered Voters in Florida and Ohio During the COVID-19 Pandemic,” by Jacob Wallace, et al.

Click to open the transcript

Transcript: Congress Kicks the (Budget) Can Down the Road. Again.

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Nov. 16, at 10 a.m. As always, news happens fast, and things might’ve changed by the time you hear this. So here we go.

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

Alice Miranda Ollstein: Hello.

Rovner: Rachel Cohrs of Stat News.

Rachel Cohrs: Hi, everybody.

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

Joanne Kenen: Hi everyone.

Rovner: No interview this week, but more than enough news, so we will get right to it. So the federal government is not going to shut down when the current continuing spending resolution expires at 12:01 a.m. Saturday. In basically a rerun of what happened at the end of September, new House Speaker Mike Johnson ended up having to turn to Democrats to pass another CR. This one extends a bunch of federal programs until Jan.19 and the rest of them until Feb. 2. Most of HHS [the Department of Health and Human Services] is in the latter category, but the FDA, because it’s funded through the Department of Agriculture, its spending bill would be in the group that’s funded only through Jan. 19. Don’t worry if you don’t remember that.

The stated goal here is to use the next two months, minus what’s likely to be a sizable Christmas break, to finish work on the individual appropriation bills, of which exactly zero of 12 have passed both the House and Senate and been sent to the president. Meanwhile, in just the last week, House Republicans have been unable to pass any of the individual appropriations they have brought to the floor and a few haven’t been able to even get to the floor. Yesterday, Republican leaders pulled the plug on the rest of the week’s floor schedule, literally in the middle of a series of votes on the HHS spending bill. So Democrats are not going to bail them out on these individual bills the way they have on the relatively clean continuing resolutions because the individual bills include very deep spending cuts and lots of abortion and transgender and other culture wars riders. So what exactly do they think is going to change between now and the next deadline?

Ollstein: Well, there’s been a lot of chatter about how cranky members of Congress have gotten because they worked 10 weeks in a row. Most of us work 10 weeks in a row without destroying each other, but there it is. And so there’s the hope that when they come back …

Rovner: Yes, there were threats of physical violence this week.

Ollstein: And allegedly some actual physical violence. Most of us work 10 weeks in a row without assaulting our colleagues, but we are not members of Congress. So the idea is they could take some time to cool off and come back and be more collaborative, but really this is a problem the Republican Caucus has not been able to solve. You have dissent on the right of the caucus and the sort of more moderate left or more left side of the caucus. You have moderate members who are worried about getting reelected in districts that voted for [President Joe] Biden who are not wanting to vote for these spending bills that are full of anti-trans and anti-abortion provisions, which you could easily picture that being used against them in campaign ads. And then you have folks on the far right in the Freedom Caucus who are sort of tanking these individual bills to protest the overall trajectory of spending and the overall process. So this is not going away anytime soon. And, like you said, Democrats are not bailing them out here.

Cohrs: One other point I wanted to make, sorry, Julie, on the deadlines is that for people who are interested in health policy and PBM [pharmacy benefit manager] reform and DSH [Medicaid’s Disproportionate Share Hospital] cuts, all of those. Those all have a Jan. 19 deadline. So those will come with the first round. So I think for the people out there who are worried about those policies, community health centers, extenders, that will happen with the first deadline even though the full Labor, HHS preparations aren’t until the second one.

Rovner: Yeah, these continuing resolutions do carry some of these extraneous, what we like to call “extender,” provisions that would otherwise have expired. And so they’ll keep them going for another couple of months and keep lobbyists busy wringing their hands and keep all of our inboxes full of emails of people warning of terrible things that will happen if these programs aren’t continued. But I want to go back to the underlying problem here, though, is that first of all, the conservative Republicans say they want to put the budget on a different trajectory. Well, discretionary spending, which is what we’re talking about here with the 12 spending bills, is a tiny portion of what makes up the budget and the budget deficit. So even if they were to cut all of these programs as dramatically as they like, they wouldn’t have much of an impact on the overall budget. I’m sort of mystified that people don’t keep pointing that out.

Ollstein: Well, and they’re also cutting things that won’t save money. I mean, they wanted to cut things like IRS enforcement, which would lose money because then the IRS wouldn’t be going after wealthy tax cheats and recouping that government spending. And so some of this is ideological. They’re going after health care programs that support LGBT people, for instance, and that doesn’t save that much money. But there’s been a lot of speeches from Republicans railing against the substance of the programs and calling them “woke” and inappropriate and such. And so, yes, some of this is fiscal, but a lot of it is also ideological.

Kenen: Yeah, it’s a relatively small portion of federal dollars, but a relatively large portion of culture war.

Rovner: Yes, I think that is a very good way to put it because, of course, it’s a place where they can put culture war things because they have to come up every year. But yeah, I think that’s why we end up fighting over this. All right, well this fight has been put off until 2024, although it’ll be the first thing when we get back.

Kenen: Yeah. And nothing’s really going to change except maybe cooler heads prevail. Anyone see any cooler heads around there? They may come back a little bit more personally tolerant when they’ve had some time off over the holidays. But the basic ideological and political alignment and the loggerheads, it’s like the only thing that changes between November, December, and January is it’s colder here then.

Rovner: Yeah, that’s exactly correct. Yeah. The far right of the House Republican Caucus is going to have to realize that there is a Senate and there is a president and they all get a say in what these final bills look like too. So they can’t just dictate we’re going to make all these cuts and, if not, we’re going to close down the government, unless that’s what they decide to do.

Kenen: But I think they skipped that session in their orientation.

Rovner: Yeah. Apparently.

Kenen: They’re not finding, “OK, where’s the compromise? What do we really, really, really want? And what are we willing to trade that for?” They’re not doing that. If you give and take, everybody gets some victory, and you have to identify what victory you can get that satisfies you. But there’s no sign of any kind of realistic grasp that this is divided government.

Rovner: Right. And they yet to figure that out. All right, well let us turn to abortion, where there is always news. We are going to start in Ohio, where last week voters, by a pretty healthy margin, approved a ballot measure to enshrine abortion rights in the state constitution. Now, though, some anti-abortion lawmakers in Ohio say, “Never mind, we can overrule that.” Really, Alice?

Ollstein: So there are efforts going on in both Ohio and Michigan to block, undo, undermine what voters voted for in these referenda and, based on talking to sources, it seems like neither of these really have legs. They’re sort of seen as just messaging. But I think that even the attempt to try to undermine or undo what voters overwhelmingly approved is telling and interesting. And, of course, it builds on all of the attempts leading up to the votes that we saw from these same forces to try to change the rules, make it more difficult. So I think when state legislatures around the country come back into session in January, we’re going to be watching closely to see if they pass things that aim to block these votes. So definitely something to keep an eye on.

Rovner: I did see that this speaker of the Ohio House has poured at least some cold water on this effort. The argument had been from some of these lawmakers that because the Supreme Court gave this decision back to the states, that means only state legislatures and not the courts and not the voters directly. Am I interpreting that right?

Kenen: Yeah, the speaker was pretty firm. He said … what did he say? It was “Schoolhouse Rock”? He basically said that the voters, they matter.

Rovner: Yeah.

Ollstein: And what’s interesting is that the court that they want to cut out of this in Ohio is very conservative. And so this isn’t like, “Oh, we want to block these liberal activist judges from weighing in here.” This is “We want to keep this solely in the hands of the legislature and not have, really, courts have a role in it at all,” although the courts are very conservative and tilt in the anti-abortion direction anyway, which I think is notable.

Rovner: We’ll definitely watch that space in the upper Midwest/Great Lakes. Well, elsewhere, in Alabama, in a story that I didn’t think got the coverage it deserved, the Justice Department is joining a case brought by an abortion fund and some former abortion providers about whether the state might be able to prosecute them for helping women travel to obtain an abortion in another state. Department of Justice says, “Of course, states can’t prevent people from traveling to other states for things that are legal in another state, but not in their state. Otherwise, very few people would be able to go to Las Vegas.” But the state attorney general has yet threatened to try to prosecute, has he not?

Ollstein: Yeah, so this is happening in a few states, but it’s sort of come to a head in Alabama in terms of treating groups that either provide material support for people to travel across state lines for an abortion or even just information, even just “Here’s a clinic that you can call in this other state.” Not even a formal referral, medical referral, but just information about where to go. The attorney general has threatened to consider that kind of a criminal conspiracy to violate Alabama’s abortion ban.

So this is an interesting test, and I think it may — like the travel bans we’ve been seeing proposed and even implemented in some cities, states, et cetera. They’re sort of trying a bunch of different things. But these are basically impossible to enforce. And so, really, what’s happening here is an attempt to undo some of the chilling effect of these laws. Right now, people are so afraid of being charged with criminal conspiracy that they’re holding off on, even providing publicly available information that’s likely protected by the First Amendment. And so they’re hoping that a court ruling saying “You do have the right to at least discuss this and even give people support to travel” will undo some of that chilling effect. And yeah, I think that’s sort of the key here.

Rovner: Yeah. Well, moving on to Texas, where a lot of these other travel bans have been tried, at least in some cities and counties, we want to go back to that case where a half a dozen women who couldn’t get care for pregnancy complications, because of the state’s abortion ban, sued. Well, now there are 22 plaintiffs in that case, including two doctors and a then-medical student who discovered her fetus’s lethal abnormalities at an 18-week scan. The Texas Supreme Court is supposed to hear this case later this month, but, Alice, this could really end up before the U.S. Supreme Court, couldn’t it? This is the concern of women who are not trying to have abortions. They were basically trying to complete pregnancies and have had things go terribly wrong. And, as you just said, doctors are afraid to treat them for fear that they’re going to be prosecuted.

Ollstein: Yeah. And so this is where state abortion bans are running up against federal protections for … you have to treat a patient who comes in who’s experiencing a medical emergency. This is the EMTALA, a federal law, and these things are in conflict. Anti-abortion groups and advocates say that they are not, and that medical care in these situations is already protected. But as we’ve seen with this chilling effect, doctors are afraid to act in these situations and they’re telling patients to go away and come back when things are more dire. And that, in some cases, in these plaintiff’s cases, has led to pretty permanent damage, damage to their future fertility, threats to their lives. And so these cases are not seeking to get rid of the abortion bans entirely, as some other lawsuits are, but they are seeking to really make clear, because it’s not clear to medical providers right now, make clear what is allowed in these really sensitive and precarious medical situations.

Rovner: Yeah, I keep hearing a lot of the anti-abortion forces saying, “Well, it’s not technically an abortion in these cases. If it’s an ectopic pregnancy or something or the woman’s water has broken early and she’s going to get septic.” And it’s like, “Except that medically, yes, they are. A termination of pregnancy is termination of pregnancy.” And that’s why the doctors are saying, “You can call this anything you want. We’re the ones who are going to get thrown in jail and lose our medical licenses.” All right. Well, before we move on, I want to talk some abortion politics. Sen. Tim Scott of South Carolina, who had been the only Republican presidential candidate strongly pushing for a federal 15-week abortion ban, suspended his campaign this week after what happened in Virginia last week, which we talked about at some length. When Republican Gov. Glenn Youngkin tried to win back the state legislature for Republicans by promising to sign his own 15-week ban and lost spectacularly. Where does that leave Republicans on abortion going into 2024? Obviously, the 15-week ban as a compromise doesn’t seem to be flying.

Ollstein: No, it’s certainly not. And Tim Scott and Mike Pence were some of anti-abortion groups’ favorite candidates who were saying what they wanted to hear, and both of their campaigns have now ended. And so, meanwhile, you have the people who have been a little more squishy, from anti-abortion advocates’ perspective anyways, like Nikki Haley and [former President Donald] Trump himself, doing the best. DeSantis also sort of middling right now on the downward trajectory, seemingly.

Rovner: DeSantis, who signed a six-week ban in Florida.

Ollstein: Exactly, but was also kind of unclear about what he would do as president, which the anti-abortion groups did not like. It’s interesting, maybe telling, that the people who were sort of the staunchest anti-abortion voices have not seemed to do well in this moment, but let’s be real. Trump is the far-and-away front-runner here. It’s most important to examine Trump. And he’s sort of trying to have it both ways. He’s both touting his anti-abortion bona fides by talking about appointing the justices to the Supreme Court that overturned Roe v. Wade, taking credit for that. And at the same time sort of pushing this line of, “Oh, we’ll strike some sort of compromise.” He really talks up exemptions for rape and incest, which, by the way, a lot of anti-abortion groups don’t want those. And so he’s sort of speaking out of both sides of his mouth, but, at least according to the polls, it seems to be working.

Rovner: Yeah, maybe that’s the answer for Republicans is tell everybody what you think they want them to know. I guess we will see going forward. Well, I want to move on. I’m calling this next segment, “Getting Old Sucks: Ask Me How I Know.” I want to start with a joint project that KFF Health News has out this week with The New York Times called “Dying Broke.” It’s about, and stop me if you’ve heard me say this before, the fact that the U.S. has no policy to help pay for long-term care, save for Medicaid, which only pays if you basically bankrupt yourself and your family.

There is a lot in this series, and I highly recommend it, but one of the things that jumped out to me is that the cost of long-term care has risen so much faster than incomes that even if you started saving for retirement in your 20s — I started saving for retirement in my 20s — you’d still be unlikely to have enough to self-insure for long-term care when you’re 75 or 80. Joanne, you’ve spent as much time as I have, probably more, writing about our lack of a long-term care policy. Anything jump out at you from this project?

Kenen: It was a terrific, terrific story, and it brought to life that even people who are definitely what you would think of as economically comfortable, it’s not enough. It’s just the luck of the draw, right? I mean, if you die fast, you can at least leave money to your kids. If you die slow, you can’t. It was a really good story. But what I always am left with when I read these stories is it doesn’t make a difference. Congress does not want to deal with this. Julie and I actually did a panel for a health group a few weeks ago, and one of the state … someone from California came up to talk about us and asked, “Why doesn’t the United States have a long-term care policy? I’m going to change that.” And we were trying to be polite, but it was like, “OK, good luck with that.” And this is not a partisan issue. Republicans and Democrats both get old and Republicans and Democrats both end up needing long-term care, whether it’s in the nursing home or assistance in your own home. Republicans and Democrats both get Alzheimer’s and other forms of dementia. They both get disabled. And we have a government that just plugs up its ears because it costs so much money and it’s an entitlement and they just don’t even want to deal with it. And generation after generation, it’s a disaster. It’s inhumane.

Rovner: And, of course, there was this brief effort in the Affordable Care Act with the CLASS Act that everybody was very excited …

Kenen: To nibble around the edges of it. The CLASS Act was good, but it wasn’t even solving the problem.

Rovner: And it went away because they discovered that even that was going to be too expensive. It could not be self-sustaining. And that’s been the problem with the private long-term care insurance market too, that you basically can’t get private long-term care insurance anymore because insurers cannot afford to sell it. They lose too much money on it, and therefore it would be too expensive if they actually charged what they needed to to even break even.

Kenen: Right. And there is an idea circulating, but it’s not getting any traction. It’s circulated in the past too, a joint approach, a reinsurance approach, that you’d try to strengthen the private long-term care insurance market, which is very broken. You’d try to fix that, but you wouldn’t expect the private insurance market to do the whole problem, so that there’d be reinsurance from the government. So for people who had maybe, I don’t know exactly how it works, say a year or two of expenses that private insurance would kick in and we would make that market work better and be there when you needed it. But then if you were somebody who had multiple years and you exhausted that benefit, there would be a backup entitlement.

Rovner: But I’ve heard this talked about for at least 10 years, and it’s never gone anywhere.

Kenen: It’s revived and it’s not getting … I don’t think it has a sponsor in this Congress. It did in the last Congress. There’s no discussion. There’s no … a lot of people think that Medicare actually pays for nursing homes, and then that’s a pretty big surprise because it only pays for very limited … it pays, like if you have surgery and you need some rehab at a nursing home for, what is it? Is it 12 weeks? I forget what it is, but it’s short-term. It’s a couple of months. It’s not dementia care. And even the other thing is when you read about the cost of long-term care, that’s just the room and board, that doesn’t include your doctors’ bills, your medication, clothing, personal aide, because people who are complicated and need a lot of care often need a personal aide in addition to the staff. It’s just a phenomenal amount of money. My kids don’t understand when I say we need to save money, they say, “Don’t you have enough?” And no, nobody has enough. Bill Gates has enough.

Rovner: Yeah, Warren Buffett has enough. Well, so, as I mentioned, one of the big problems with long-term care is that there’s essentially no private insurance for it anymore because it’s so expensive and because so many people end up needing it. That’s very different from Medicare Advantage, where insurers are and have been making lots of money providing benefits that would otherwise be paid for by the federal government. But Rachel, some of your colleagues have discovered that, and in at least some cases, those insurers are making all that money because they’re denying care to patients who need it. This is your extra credit this week, but I want you to talk about it now.

Cohrs: I’ll talk about it early. Yes. So my colleagues, Casey Ross and Bob Herman have been digging into the role of algorithms in insurance decisions for the past year. And they just released a new story this week about — with internal documents of a subsidiary called naviHealth of UnitedHealth — showing that the company was instructing managers to keep care timelines for a really expensive rehab that older people, I think, need after having injuries or something like that within 1% of the time that this algorithm was predicting, regardless of what their actual human doctors were saying. And truly, the stories behind these care denials are just really horrifying … of somebody who had a knee surgery and was expected to slide on their butt down the stairs because they weren’t paying for rehab. Families who’ve had to pay tens of thousands of dollars out of their own pocket after this care was denied because they saw that their loved one clearly needed money, and there was a class-action lawsuit filed, then after the story was published, by people who had deceased relatives who had UnitedHealthcare MA plans, and were denied rehab and later died. And so I think it’s just really eye-opening as to the actual instructions by managers inside the company saying that this is your expectation, and if you’re not keeping coverage care rehab timelines within this 1% margin, then you aren’t performing up to our standards.

Rovner: So this is basically AI being used to deny care. We keep talking about AI and health care. This is it, right? This is an algorithm that says, “Person who goes into rehab with these kinds of problems should only need 19 days.” And if you need more than that, tough. That’s essentially what’s going on here, right?

Cohrs: And the lawsuit did highlight as well that when people did appeal, they won most of the time, but most people didn’t appeal, and the company knew that. And so I think that was also part of the lawsuit that came up. It’s hard to prove intent with these things or what is a denial based on an algorithm? But I think this lays out the case in as explicit terms as we’ve ever seen from the internal side.

Rovner: It does. All right, well let us move on from Medicare to Medicaid, the unwinding — involving reviewing everyone on the program to make sure they’re still eligible now that the pandemic emergency has expired — continues with more than 10 million people now having lost their coverage, according to the tracker being updated by my KFF colleagues. And state Medicaid directors are predicting a year-over-year decrease in enrollment of 8.6%, which is pretty dramatically large. We also know that more than 70% of those being disenrolled may in fact still be eligible, but the state was unable to locate them or they didn’t file the right paperwork. Ironically, even with a much smaller caseload, state Medicaid spending is likely to rise because the additional payments that were provided by the federal government also expired at the end of the public health emergency. So states are basically having to pay more per enrollee than they were paying even when they were leaving everybody on the rolls. Advocates have been complaining all year that the Biden administration isn’t doing enough to ensure that states aren’t tossing people off who should still be covered. Has anything changed on that front? I know that the administration is sort of caught between this rock and a hard place. They don’t want to come out guns blazing and have states saying that they’re making this politicized. On the other hand, the numbers are getting pretty big and there’s increasing evidence that a lot of the people who are being relieved of their coverage should still have it.

Ollstein: Including a lot of children who absolutely did not do anything wrong in this situation. And so it kind of reminds me of some stuff during covid, where the Biden administration did not want to get into a public fight with GOP-controlled states and was trying to negotiate behind the scenes to get the policies they wanted to protect people. But at the same time, not wanting that open confrontation means that a lot of this is continuing to go on unchecked. And so the data is coming out showing that a lot of people who are losing coverage are not reenrolling in other coverage. Some are, but a lot are not. And so I think now that we’re getting, going to get into Obamacare open enrollment, I think that’ll be really key to see — can we scoop up a lot of these newly uninsured people?

Rovner: And we did, we saw the administration put out a press release saying that the early part of open enrollment has seemed very large, much larger-than-expected enrollment. And you kind of wonder, I’m kind of wondering, how many of those people were people who got kicked off of Medicaid. And, of course, we know that when people got kicked off of Medicaid, they were supposed to be steered to the Affordable Care Act, for which they would’ve obviously been eligible. But I’m wondering whether some of those people didn’t get steered and now that they’re seeing that enrollment is open, it’s like, “Oh, maybe I can get this.” I have not seen anybody answer that question, but it’s certainly a question in my mind.

Cohrs: Right. And coverage is more affordable as well because subsidies from the covid-era spending bills do extend through 2025. But again, people might see increases in costs once those end, if Congress doesn’t extend them. So even if we do see some people moving from Medicaid to ACA enrollment, then there’s a chance that they could see spikes in a pretty short amount of time.

Rovner: Yeah, I’ll be curious to see as open enrollment continues, whether they can break down where some of those people are coming from. All right, now it is time for “This Week in Health Misinformation.” I have chosen a KFF Health News story, which is also my extra credit this week, from science journalist Amy Maxmen, called “How Lawmakers in Texas and Florida Undermine Covid Vaccination Efforts.” It seems that in Texas health departments and other organizations funded by the states are now prohibited from advertising or recommending covid vaccines or even saying that they are available, unless that’s in conjunction with telling them about other vaccines that are available, too. In Florida, as we have talked about here before, the health department has issued specific guidance recommending against the new covid vaccine for children and teens and now men under the age of 40. Unless you think this hasn’t had any impact before the vaccines were available, Democrats and Republicans were dying of covid in roughly equal proportions in Florida and Ohio, according to a study published earlier this summer in the journal JAMA Internal Medicine.

But by the end of 2021, which was the first full year that covid vaccines were widely available, Republicans had an excess death rate of 43% higher than Democrats. So medical misinformation has consequences. 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. Rachel, you’ve done yours already. Alice, why don’t you go next?

Ollstein: Sure. So I have a very depressing one out of The New York Times by Jack Healy and it’s called “They Wanted to Get Sober. They Got a Nightmare Instead.” And it is about these fraudulent, scammy addiction treatment facilities in Arizona, but it notes that they do exist in other states as well, that have been bilking the state Medicaid program for just millions and millions and millions of dollars and providing inadequate or nonexistent treatment to really vulnerable people in need, with very deadly consequences. And the places profiled in this piece really went after Native American folks specifically. So very sad report, but it sounds like more attention on this is leading to the state cracking down on places like this. So, hopefully, we’ll make some progress there.

Rovner: Yeah, quite a story, Joanne.

Kenen: This is a story, part of an ongoing series from Mississippi Today, in conjunction with ProPublica’s local reporting network: “Mississippi Jailed More Than 800 People Awaiting Psychiatric Treatment in a Year. Just One Jail Meets State Standards.” It’s by Isabella Taft. In Mississippi, if you’re unfortunate enough to have such serious mental illness that a court orders you to have treatment and there’s no room in a state hospital, they put you in jail while you wait for a room in state hospitals. And sometimes they’re housed in these facilities or rooms that are meant for people with severe mental illness, but they’re awful. And sometimes they’re just housed with a regular prison population. And the sheriffs say, “Wait a minute, it’s not really our problem to be housing … state hospitals have to fix this.” And they have a point! But in the meantime, that’s who they have. That’s where they end up. They end up in these jails, these local jails, and the sheriffs are responsible. And only one hospital meets the state certification for what these people need.

And some of these stays. They’re not like two days, they can be prolonged. There’ve been a lot of deaths, there’ve been a lot of suicides. It’s a really pretty disturbing situation. It’s sort of the mental health crisis and the mental health provider shortage and countrywide really writ large among some of the most vulnerable people.

Rovner: All right, well, we’ve had four grim extra credits this week, but they’re all good stories. OK, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks this week to Zach Dyer for filling in as our technical guru while Francis [Ying] takes some much-deserved time off. We’re going to take next week off, too, for the Thanksgiving holiday. As always, you can email us your comments or questions or your suggestions for our medical misinformation segment. We are at whatthehealth@kff.org. Or you can still find me at X, @jrovner, or @julierovner at Bluesky and Threads. Alice?

Ollstein: @AliceOllstein on X, and at AliceMiranda on Bluesky.

Rovner: Rachel.

Cohrs: I’m @rachelcohrs on X and rchohrsreporter on Threads.

Rovner: Joanne.

Kenen: @JoanneKenen on X, and I’m increasingly switched to Threads at @joannekenen1.

Rovner: We will be back in your feed in two weeks. Until then, be healthy.

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The world is entering a new era of vaccines. Following the success of covid-19 mRNA shots, scientists have a far greater capacity to tailor shots to a virus’s structure, putting a host of new vaccines on the horizon.

The most recent arrivals — as anyone on the airwaves or social media knows — are several new immunizations against respiratory syncytial virus, or RSV.

These shots are welcome since RSV can be dangerous, even deadly, in the very old and very young. But the shots are also expensive — about $300 for those directed at adults, and up to $1,000 for one of the shots, a monoclonal antibody rather than a traditional vaccine, intended for babies. Many older vaccines cost pennies.

So their advent is forcing the United States to face anew questions it has long sidestepped: How much should an immunization that will possibly be given — maybe yearly — to millions of Americans cost to be truly valuable? Also, given the U.S. is one of two countries that permit direct advertising to consumers: How can we ensure the shots get into the arms of people who will truly benefit and not be given, at great expense, to those who will not?

Already, ads on televisions and social media show active retirees playing pickleball or going to art galleries whose lives are “cut short by RSV.” This explains the lines for the shot at my local pharmacy.

But indiscriminate use of expensive shots could strain both public and private insurers’ already tight budgets.

Other developed countries have deliberate strategies for deciding which vulnerable groups need a particular vaccine and how much to pay for it. The U.S. does not, and as specialized vaccines proliferate, public programs and private insurers will need to grapple with how to use and finance shots that can be hugely beneficial for some but will waste precious health dollars if taken by all.

A seasonal viral illness, RSV can cause hospitalization or, in rare cases, death in babies and in people age 75 or older, as well as those with serious underlying medical conditions such as heart disease or cancer. For most people who get RSV, it plays out as a cold; you’ve likely had RSV without knowing it.

But RSV puts about 2% of babies under age 1 in the hospital and kills between 100 and 300 of those under 6 months, because their immune systems are immature and their airways too narrow to tolerate the inflammation. Merely having a bad case of RSV in young childhood increases the risk of long-term asthma.

That’s why Barney Graham, the scientist who spent decades at the government’s National Institutes for Health perfecting the basic science that led to the current shots, said: “The most obvious use is in infants,” not adults.

That’s also why European countries trying to figure out how best to use these vaccines without breaking the bank focused first on babies and determining a sensible price. Though more of the very old may die of RSV, the years of life lost are much greater for the very young. (Babies can get the monoclonal antibody shot or gain protection through a traditional vaccine given to the mother near the end of pregnancy, conferring immunity through the womb.)

A consortium of European experts led by Philippe Beutels, a professor in health economics at the University of Antwerp in Belgium, calculated that the shots would only be “worth it” in terms of the lives saved and hospitalizations averted in infants if the price were under about $80, he said in a phone interview. That’s because almost all babies make it through RSV with supportive care.

The calculation will be used by countries such as Belgium, England, Denmark, Finland, and the Netherlands to negotiate a set price for the two infant shots, followed by decisions on which version should be offered, depending partly on which is more affordable.

They have not yet considered how to distribute the vaccines to adults — considered less pressing — because studies show that RSV rarely causes severe disease in adults who live outside of care settings, such as a nursing home.

Why did the United States and Europe approach the problem from opposite directions?

In the U.S., there was a financial incentive: Roughly 3.7 million babies are born each year, while there are about 75 million Americans age 60 and older — the group for whom the two adult vaccines were approved. And about half of children get their vaccines through the Vaccines for Children program, which negotiates discounted prices.

Also, babies can get vaccinated only by their clinicians. Adults can walk into pharmacies for vaccinations, and pharmacies are only too happy to have the business.

But which older adults truly benefit from the shot? The two manufacturers of the adult vaccines, GSK and Pfizer, conducted their studies presented to the FDA for approval in a population of generally healthy people 60 and older, so that’s the group to whom they may be marketed. And marketed they are, even though the studies didn’t show the shots staved off hospitalization or death in people ages 60 to 75.

That led to what some have called a “narrow” endorsement from the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices for people 60 to 75: Patients in that age range could get the shot after “shared clinical decision-making” with a health provider.

It is likely that because of this fuzzy recommendation, some Americans 60 and over with commercial insurance are finding that their insurers won’t cover it. Under Obamacare, insurers are generally required to cover at no cost vaccines that are recommended by the ACIP; however, if a provider recommends vaccination, then it must be covered by insurance.

(In late September, the ACIP recommended immunization of all babies with either the antibody or the maternal vaccine. Insurers have a year to commence coverage and many have been dragging their feet because of the high price.)

There are better and more equitable ways to steer the shots into the arms of those who need it, rather than simply administering it to those who have the “right” insurance or, swayed by advertising, can pay. For example, insurers, including Medicare, could be required to cover only those ages 60 to 75 who have a prescription from a doctor, indicating shared decision-making has occurred.

Finally, during the pandemic emergency, the federal government purchased all covid-19 vaccines in bulk at a negotiated price, initially below $20 a shot, and distributed them nationally. If, to protect public health, we want vaccines to get into the arms of all who benefit, that’s a more cohesive strategy than the patchwork one used now.

Vaccines are miraculous, and it’s great news that they now exist to prevent serious illness and death from RSV. But using such novel vaccines wisely — directing them to the people who need them at a price they can afford — will be key. Otherwise, the cost to the health system, and to patients, could undermine this big medical win.

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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Julie Rovner
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@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.

Autumn is for pumpkins and raking leaves — and open enrollment for health plans. Medicare’s annual open enrollment began Oct. 1 and runs through Dec. 7. It will be followed shortly by the Affordable Care Act’s annual open enrollment, which starts Nov. 1 and runs until Jan. 15 in most states. But what used to be a fairly simple annual task — renewing an existing health plan or choosing a new one — has become a confusing, time-consuming mess for many, due to our convoluted health care system.

Meanwhile, Ohio will be the next state where voters will decide whether to protect abortion rights. Those on both sides of the debate are gearing up for the November vote, with anti-abortion forces hoping to break a losing streak of state ballot measures related to abortion since the 2022 overturn of Roe v. Wade.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, Alice Miranda Ollstein of Politico, and Lauren Weber of The Washington Post.

Panelists

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Lauren Weber
The Washington Post

@LaurenWeberHP

Read Lauren's stories

Among the takeaways from this week’s episode:

• The U.S. House of Representatives has been without an elected speaker since Oct. 4. That means lawmakers cannot conduct any legislative business, with several important health bills pending — including renewal of the popular international HIV/AIDS program, PEPFAR.
• Open enrollment is not just for people looking to change health insurance plans. Plans themselves change, and those who do nothing risk continuing in a plan that no longer meets their needs.
• A new round of lawsuits has sprung up related to “abortion reversals,” a controversial practice in which a patient, having taken the first dose of a two-dose abortion medication regimen, takes a high dose of the hormone progesterone rather than the second medication that completes the abortion. In Colorado, a Catholic-affiliated health clinic says a state law banning the practice violates its religious rights, while in California, the state attorney general is suing two faith-based chains that operate pregnancy “crisis centers,” alleging that by advertising the procedure they are making “fraudulent and misleading” claims.
• The latest survey of employer health insurance by KFF shows annual family premiums are again escalating rapidly — up an average of 7% from 2022 to 2023, with even larger increases expected for 2024. It’s not clear whether the already high cost of providing insurance to workers — an annual family policy now averages just under $24,000 — will dampen companies’ enthusiasm for providing the benefit.

Also this week, Rovner interviews KFF Health News’ Arielle Zionts, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” feature about the wide cost variation of chemotherapy from state to state. If you have an outrageous or inscrutable medical you’d like to send us, you can do that here.

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

Julie Rovner: NPR’s “How Gas Utilities Used Tobacco Tactics to Avoid Gas Stove Regulations,” by Jeff Brady.

Lauren Weber: KFF Health News’ “Doctors Abandon a Diagnosis Used to Justify Police Custody Deaths. It Might Live On, Anyway,” by Markian Hawryluk and Renuka Rayasam.

Joanne Kenen: The Washington Post’s “How Lunchables Ended Up on School Lunch Trays,” by Lenny Bernstein, Lauren Weber, and Dan Keating.

Alice Miranda Ollstein: KFF Health News’ “Pregnant and Addicted: Homeless Women See Hope in Street Medicine,” by Angela Hart.

Also mentioned in this week’s episode:

• The Washington Post’s “The Post Spent the Past Year Examining U.S. Life Expectancy. Here’s What We Found,” by The Washington Post staff.
• The Washington Post’s “Primary Care Saves Lives. Here’s Why It’s Failing Americans,” by Frances Stead Sellers.
• Vox’s “Vox Launches New Guide to Open Enrollment,” by Vox Communications.
• Politico Magazine’s “How Dobbs Triggered a ‘Vasectomy Revolution,’” by Jesús A. Rodríguez.

Click to open the transcript

Transcript: The Open Enrollment Mixing Bowl

KFF Health News’ ‘What the Health?’Episode Title: The Open Enrollment Mixing BowlEpisode Number: 319Published: Oct. 19, 2023

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Oct. 19, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. Today, we are joined via video conference by Alice Ollstein of Politico.

Alice Miranda Ollstein: Good morning,

Rovner: Lauren Weber of The Washington Post.

Lauren Weber: Hello, hello.

Rovner: And Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Joanne Kenen: Hi, everybody.

Rovner: Later in this episode, we’ll have my interview with Arielle Zionts, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” about how chemotherapy can cost five times more in one state than in another. But first this week’s news. So, it’s Oct. 19, the House of Representatives is still without a speaker. That’s 2½ weeks now. That means legislation can’t move. Are there health care items that are starting to stack up? And what would it mean if the House ends up with an anti-federal government conservative like Rep. Jim Jordan, who, at least as of this moment, is not yet the speaker and does not yet look like he has the votes?

Ollstein: So in terms of unfinished health care business, the three big things we are tracking are things that actually lapsed at the end of September. Congress did manage to keep the government open, but they allowed three big health care things to fall by the wayside, and those are PEPFAR, the global HIV/AIDS program, the SUPPORT Act, the programs for opioids and addiction, and PAHPA, the public health, pandemics, biohazards big bill. And so those …

Rovner: I think one of those P’s stands for “preparedness,” right?

Ollstein: Exactly, yes. But it’s related to pandemics, and you would think after all we just went through that that would be more of a priority, but here we are. The reauthorization of all three of those is just dangling out there and it’s unclear if and when Congress can act on them. There is some level of bipartisan support for all of them, but that is what is stacking up, and nothing is really happening on those fronts, according to my conversations with sources on the Hill because everything has just ground to a halt because of the speaker mess.

Rovner: And, of course, we’re less than a month away from the current continuing resolution running out again, and we may go through — who knows? They may get a new speaker and then he may lose his job or her job once they try to keep the government open in November. It’s a mess. I’ve never seen anything like this …

Kenen: Also, in addition to those three very political … even public health and pandemics are now politics … that Alice correctly pointed out, these three huge ideological, how are we going to get them reauthorized in the next 30 days? But there’s also more routine things that are not controversial but are caught up in this such as community health center funding, which has bipartisan support, but they need their apropos and all that stuff. So in addition to these sort of red-blue fights, there’s just, how do we keep the doors open for people who need access to health care? That’s not the only program. There are many day-to-day programs that like everything else in the government are up in the air.

Rovner: I mean, we should point out this is unprecedented. The only other time the House has been without a speaker this long was one year when they didn’t come in at the beginning of the Congress until later in January. It’s literally the only time. There’s never been a mid-session speakerless House. So everything that happens from here is unprecedented. Well, meanwhile, if you have turned on a TV in the past week, you already know this, but Medicare open enrollment began last Sunday, Oct. 15. To be clear, when you first become eligible for Medicare, you can sign up anytime in the three months before or after your birthday. But if you enroll in a private Medicare Advantage plan or a private prescription drug plan, and most people are in one or the other or both, open enrollment is when you can add or change coverage. This used to be pretty straightforward, but it’s only gotten more confusing as private plans have proliferated. This year the Biden administration is trying to fight back against some of the misleading marketing efforts. Politico reports that the government has rejected some 300 different ads. Is that enough to quell the confusion? I’m already seeing ads and kind of look at it, like, “I don’t think that says what it means to say.”

Weber: Yeah, we see this every year. It’s a ton of ads. It’s a barrage of ads that all say, “Hey, this plan is going to get you X, Y, Z, and that’s better than traditional Medicare.” But you got to read the fine print, and I think that is the big thing for all the folks that are looking at this every time. Open enrollment is very confusing, and a lot of times people are trying to sell you things that are not what they appear. So it does appear that there has been more movement to crack down on those ads. But look, the family members I talked to are still confused, so I don’t know how much that’s proliferating down quite yet.

Kenen: And even if the ads were honest, our health system is so confusing. Even if you’re at an employer health system. All of us are employed, all of us get insurance at work, and none of us really know we have made the best choice. I mean, you need a crystal ball to know what illness you and your relatives are going to get that year, and what the copays and deductibles for that specific condition. I’ve never been sure. I have three choices. They’re all decent, whether it’s the best for me and my family, with all that I know about health care, I still don’t know I made the best choice ’cause I don’t have a crystal ball or not one that works.

Rovner: Right. I also have choices, and I did my mom’s Medicare for years, as Joanne remembers …

Kenen: You did a great piece on that one.

Rovner: … this is the way I remember it. I did do a piece on that. Long time ago, when they were first starting the prescription drug benefit and you had to sort of sign up via a computer, and in 2006, not that many seniors knew how to use computers. At least we’re sort of over that, but there’s still complaints about the official website Medicare.gov, which does a pretty good job. It’s just got an awful lot of steps. It’s one of those things, it’s like, “OK, set aside two hours,” and that’s if you know what you’re doing to do this. So meanwhile, if this isn’t all confusing enough, open enrollment for the Affordable Care Act opens in two weeks, and while Medicare open enrollment ends Dec. 7, ACA enrollment goes through Jan. 15 in most, but not every, state. In both cases, if you get your insurance through Medicare or through the ACA, you should look to see what changes your plan might be making. I should say also, if it’s open enrollment for your employer insurance, plans make changes pretty much every year. So you may end up, even if you’re in the same plan, with a plan that you don’t like or a plan that you don’t like as much as you like it now. This is insanely complicated, as you point out, for everybody with insurance. Is there any way to make it easier?

Kenen: There’s no politically palatable way to make it easier. And then things they’ve done to try to make it easier, like consistent claims forms, which most of us don’t have to fill out anymore. Most of that’s done online, but they’re not using consistent claim forms and there’s nothing simple and there’s nothing that’s getting simpler. And we’re all savvy …

Rovner: It’s what keeps our “Bill of the Month” project in business.

Kenen: Right. We’re all pretty savvy and none of us are smart enough to solve every health care problem of us and our family.

Rovner: It’s one of those things where compromise actually makes for complexity. When policymakers can’t do something they really want to do, they do something smaller and more incremental. And so what you end up with is this built on, in every which way, kind of health care system that nobody knows how it works.

Kenen: Like the year I hurt both a finger and a toe. And I had a deductible for the finger, but not for the toe. Explain that!

Rovner: I assume it was in and out of network or not even.

Kenen: No. They were both in network. All of my digits are in network.

Weber: I just got a covid test bill from 2020 that I had previously knocked down by calling, but they rebilled me again. And because I am a savvy health care reporter, I was like, “I’m not paying this. I know that I don’t have to pay this.” But it took probably 10 hours to resolve, I mean, and that’s not even picking insurance. So I’m just saying it’s an incredibly complex marketplace. Shout-out to Vox who had a really nice series that tried to make it easier for people to understand the differences between Medicare and Medicare Advantage, open enrollment, what that all means. If you haven’t seen that and you’re confused about your insurance options, I would highly recommend it.

Rovner: And I will link to the Vox series, which is really good, but it was kind of looking at it. I mean, they had to write six different stories. It’s like that’s how confusing things are, which is really kind of sad here, but we will move on because we’re not going to solve this one today. So speaking of things that are complicated and getting more so, let’s turn to reproductive health. Alice, the big event that people on both sides are waiting for — one of those events, at least — is a ballot measure in Ohio that would establish a state constitutional right to abortion. So far, every state ballot measure we’ve seen has gone in favor of the abortions rights side. How are abortion opponents trying to flip the script here?

Ollstein: So I was in Ohio a couple of weeks ago and was really focused on that very question, just what are they doing differently? How are they learning lessons from all of the losses last year? And why do they think Ohio will be any different? I will say, since my piece came out, there was the first poll I’ve seen of how people are approaching the November referendum, and it showed overwhelming support for the abortion rights side, just like in every other state. So have that color, what I’m about to say next, which is that the anti-abortion side thinks they can win because they have a lot of structural factors working in their favor. They have the governor of Ohio really actively campaigning against the amendment. So that’s in contrast to [Gov. Gretchen] Whitmer in Michigan last year, campaigning actively for it. When you have a fairly popular governor, that does have an impact, they’re a known trusted voice to many. Also …

Rovner: And the governor of Ohio is also a former senator and I mean a really well-known guy.

Ollstein: Yeah. Yeah, exactly. You just have the entire state structure working to defeat this amendment. They tried in a special election in August to change the rules. That didn’t work. Now, you just have all of these top officials using their bully pulpit and their platforms to try to steer the vote in the anti-abortion direction. Also, the actual campaign itself is trying to learn lessons from last year and doing a few things differently. They’re going really aggressively after the African American vote, particularly through Black churches. And so that’s not something I saw in the states I reported on last year, and they’re really aggressively going after the student vote. And I went to a student campus event at Ohio State that the anti-abortion side was holding, and it seemed pretty effective. There was a ton of confusion among the students. A lot of the students are like, “Wait, didn’t we just vote on this?” referring to the August special. They said, “Wait a minute, which side means yes, and which side means no?” There was just rampant confusion, and it wasn’t helped … I observed the anti-abortion side, telling people some misleading things about what the amendment would and wouldn’t do. And so all of that could definitely have an impact. But like I said, since my story came out, a poll came out showing really strong support for the abortion rights amendment, which would block the state’s six-week ban, which is now held up in court, but the court leans pretty far to the right. This would block that from going back into effect potentially.

Rovner: Ohio, the ultimate swing state, probably the reddest swing state in the country. But Ohio is not the only state having an off-year election next month. Virginia doesn’t have an abortion measure on the ballot, but its entire state House and Senate are up for reelection. And from almost every ad I’ve seen from Democrats, it mentions abortion, and there’s a lot of ads here in the Washington, D.C., area for some of the Virginia elections. Republican Gov. Glenn Youngkin, who’s not on the ballot this year, thinks he has a way of talking about abortion that might give his side the edge. What are we going to be able to tell from the ultimate makeup of the very narrowly divided Virginia Legislature when this is all said and done?

Kenen: It won’t be veto-proof. Unlike North Carolina now, even if it’s the Democrats hold the one chamber they have or win both of them, and it’s really close. These are very closely divided, so we really don’t know how it’s going to turn out. But I mean he …

Rovner: One year it was so close that they literally had to draw rocks out of a bowl.

Kenen: Yeah, right. There’s highly unlikely that there will be a scenario where there’s a really strongly Democratic legislature with a Republican governor. That’s not likely. What’s likely is a very narrowly divided, and we don’t know who has the edge in which chamber. So the governor can’t just do things unilaterally, but how it plays out. And Youngkin’s backing a 15-week ban with some exceptions after that for life and health. A year ago, that would’ve seemed like an extreme measure. And now it seems moderate, I mean compared to zero weeks and no exceptions. So Virginia’s a red state, it’s swung blue. It’s now reddish again, I mean, it’s not a swing state so much in presidential, but on the ground, it’s a swing state. And …

Rovner: But I guess that’s what I was getting at was Youngkin’s trying to sort of paint his support as something moderate …

Kenen: That’s how he’s been trying to thread this needle ’cause he comes across as moderate and then he comes across as more conservative. And on abortion, what’s moderate now? I mean, in the current landscape among Republican governors, you could say his is moderate, but Alice follows the politics more closely, but half the country doesn’t think that’s moderate.

Rovner: If the Democrats retain or win both houses of the legislature, I mean, will that send us a message about abortion or is that just going to send us a message about Virginia being a very narrowly divided state?

Ollstein: I think both. I think Joanne is right in that the polling and the voting record over the last year reflect that a lot of people are not buying the idea that 15 weeks is moderate. And a lot of polls show that when presented the choice between a total ban and total protections, even people who are uncomfortable with the idea of abortions later in pregnancy opt for total protections. And so you’ve seen that play out. At the same time, there’s a lot of people on the right who correctly argue that the vast majority of abortions happen before 15 weeks, and so 15 weeks is not going far enough. And they’re not in favor of that as so-called compromise or moderate policy. And so …

Rovner: There are no compromises in abortion.

Ollstein: Truly, truly.

Rovner: If we’ve learned anything, we’ve learned that.

Ollstein: And when you try to please everyone, sometimes you please no one, as we’ve seen with both candidates and policies that try to thread this needle. And so I think it will be a really interesting test because yes, right now the legislature is sort of the firewall between what the governor wants to do on abortion, and whether that will continue to be true is a really interesting question.

Rovner: Meanwhile, we have dueling abortion reversal lawsuits going on in both Colorado and California. Abortion reversal, for those who don’t follow all the jargon, is the concept of interrupting the two-medication regime for abortion by pill. And instead of taking the second medication, the pregnant person takes large doses of the hormone progesterone. The American College of Obstetricians and Gynecologists says there is no evidence that this works to reverse a medication abortion and that it’s unethical for doctors to prescribe it. But in Colorado, a Christian health clinic is charging that a state law that bans the practice offering abortion reversal violates their freedom of religion. In California, it’s actually the opposite. The state attorney general is suing a pregnancy crisis center for false advertising, promoting the practice. Alice, how big a deal could this fight over abortion reversal become? And that’s assuming that the pill remains widely available, which is going to be decided by yet another lawsuit.

Ollstein: Yeah, absolutely. Although it’ll be a long time before we know whether mifepristone is legally available on a federal basis. But I’ve been watching this bubble up for years, but it’s up till now been more of a rhetorical fight in terms of: “Abortion reversal is a thing.” “No, it’s not.” “Yes, it is.” “No, it’s not.” “Here’s my expert saying it is.” “Here’s my expert saying it’s not.” But this is really moving it into a more sort of concrete, legal realm, and not just rhetoric. And so it is an escalation, and it will be interesting to see. Mainstream health care organizations do not support this practice. There was a clinical trial of it going on that was actually called off because of the potential dangers involved and risks to participants …

Rovner: Of doing the abortion reversal method …

Ollstein: Exactly. Yes.

Rovner: … of trying to interrupt a medication abortion.

Ollstein: Yes. This is really on the cutting edge of where medicine and politics are clashing right now.

Rovner: Yeah, we’ll see how it, and, of course, if they end up in different places, this could be something else that ends up in front of the Supreme Court. And this is, I think, less of an argument about religious freedom than an argument about the ability of medical organizations to determine what is or isn’t standard of practice based on evidence. I mean, I guess in some ways it becomes the same thing as the broader mifepristone case, where it’s like, do you trust the FDA to determine what’s safe? And now, it’s like, do you trust ACOG and the AMA [American Medical Association] and other organizations of doctors to decide what should be allowed?

Kenen: I mean, progesterone has medical purposes, it’s used to prevent miscarriages, but it’s off-label. It goes into these other questions, which all of us have written about — ivermectin, and who gets legal substances, and how do you use them properly, and what’s the danger? And there’s a bunch of them.

Weber: I think the fight over standard of care has really become the next frontier in medical lawsuits. I mean, we’ve all written about this, but ivermectin, obviously, misinformation, prescribing hydroxychloroquine, all of these things are now getting into the legal field. Is that the standard of care? What is the standard of care and how does that play out? So I agree with you. I think this is going to end up by the Supreme Court and I think it has much broader implications than just for mifepristone and abortion drugs too.

Rovner: Yeah, I do too. Well, finally, in an update I did not have on my post-Roe Bingo card, it appears that vasectomies are up in some states, including Oregon, where abortion is still legal, and Oklahoma, where it’s not very widely available. Are men finally taking more responsibility for not getting the women they have sex with pregnant? That would be a big sea change.

Ollstein: Yeah, we’ve been hearing anecdotally that this has been the case definitely since Dobbs and even before that as abortion restrictions were mounting. Politico Magazine did a nice piece on this last year profiling vasectomy [in] a mobile van. And it’s also just fascinating and a lot of people have been highlighting just how few restrictions on vasectomies there are compared to more permanent sterilization for women: no waiting periods, no fighting about it. And so it does provide an interesting contrast there.

Rovner: I know there have been stories over the years about how the demand for vasectomies goes up right before the NCAA tournament in March and April because men figure that they can just recuperate while watching basketball.

Ollstein: I thought that was a myth then I looked it up and it’s absolutely true.

Rovner: It is absolutely true.

Kenen: I mean, it also seems to be more common among older men who’ve had a family and because it’s permanent, I mean usually permanent. It’s usually permanent and right, it’s one thing to decide after a certain point in your life when you’ve already had your kids. I mean, it’s not going to be an option for younger men who haven’t had children.

Rovner: It’s also reliable, it is one of those things that you don’t have to worry about.

Kenen: Even though I looked up the figures once, it’s a very, very low failure rate, but it’s not zero.

Rovner: True. We are moving on to what I call this week in declining life expectancy. I’m glad that Lauren is back with us because The Washington Post has published the next pieces of its deep dive into the U.S. population’s declining life expectancy. And we’re going to start with a story that was co-written by Lauren, but that is Joanne’s extra credit this week. So Joanne, you start, and then Lauren, you can chime in.

Kenen: OK. It’s “How Lunchables Ended Up on School Lunch Trays.” For those of you who have never been in a supermarket or who have closed your eyes in certain aisles, Lunchables are heavily processed, encased in plastic, small lunchboxes of a — it’s not even much of a meal or small — which you can buy in the supermarket. And now two of them have been modified so that they’re allowed in schools as healthy enough …

Rovner: They’re quote, unquote, “balanced” because it’s a little piece of meat and a little piece of cheese.

Kenen: They have so far just a turkey cheese option that qualifies for schools and a pizza that qualifies for schools. Not a whole pizza, a little … but the kid in the story, the second grader in the story, didn’t even know it was turkey. It has 14 ingredients. He thought it was ham. So I mean, that just sort of says it, but it’s beyond the lack of nutrition, it started out sort of like what is this child putting in his mouth and why is it called school lunch? But the story was deeper because it was a very long investigation by Lauren and Dan Keating on the relationship between the food industry, the trade group, and the government regulation. And just say, it leaves a lot to be desired. And you should all read the story only because you can click on the story of the oversized Cheez-It.

I mean, it’s a fake one, but the replica of this as big as the planet Mars. I mean, it’s just this huge Cheez-It. And it’s a really good story because it’s overprocessed food is really bad for us. And I mean, scientists have matched the rise of this overprocessed stuff that began as food and the rise of obesity in America. And it’s not just taking the salt out of it, which they’re doing, the sodium out of or adding a little calcium or something to these processed foods. They’re ultra-processed foods, and that’s not what our body needs.

Rovner: So, Lauren, I mean, how does this relate to the rest of this declining life expectancy project and what else is there to come?

Weber: This is our big tranche of stories. I mean, we should have some follows, but that’s it. And well, Joanne, thank you for the kind words on it. We really appreciate that. But I mean, I think the point that she made that I want to highlight for this in general is what was wild in investigating this story is pizza sauce is a vegetable in the U.S. when it comes to school lunch and french fries are also a vegetable. And that’s really all you need to sum up how the industry influence in Congress has resulted in what kids are having for their school lunch today. One of the things we got to do for the story is go to the national School Nutrition Association conference, which is where we saw the giant Cheez-It. And it’s this massive trade fair of all these companies where they throw parties for the school nutrition personnel to try all the different food. And it’s wild to see in real life. And what Joanne made a good point of about ultra-processed food and what the rules do right now is they don’t consider the integrity of the food. They set limits on calories and sodium, but they don’t consider what kids are actually eating. And so you end up with these ultra-processed foods that growing body of research suggests really have some negative health consequences for you. And so, as Joanne talked about, and as our series gets into, obesity is a real problem in this country, and obesity has huge, long-lasting, life-shortening impacts. One of the folks we talked to for the piece, Michael Moss, said, he worries that processed food is the new tobacco because he feels like smoking’s going down, but obesity’s going up. And something he said to me that didn’t make the piece, but I thought was really interesting is that at some point he thinks there’ll be some sort of class-action lawsuit against ultra-processed food, much like a cigarette lawsuit-

Rovner: Like with tobacco.

Weber: Like a tobacco lawsuit, like an opioid lawsuit. I think that’s kind of interesting to think about, but this was just one of the many life expectancy stories. I want to shout out my colleague Frances Stead Sellers’ story, which talked about how it compared is brilliant. It compared two sisters with rheumatoid arthritis, one who lives in the U.S. and one who lives in Portugal. They’re both from Portugal. The one in Portugal has all this fabulous primary health care. The doctors even call her on Christmas and they’re like, “We’re worried you’re going to have chocolate cherries with brandy that would interact with your medicine.” Whereas the one in the U.S. has to go to the ER all the time because she doesn’t have steady health care and she can’t seem to make it work, ends meet. She doesn’t have a primary health care system. She’s a disjointed doctor system. And the end of the story is the sister in the U.S. who has this severe health problem is moving to Portugal because it’s just so much better there for primary care. And I think that gets at a lot of what our stories on life expectancy have talked about, which is that primary care, preventative care in the U.S. is not a priority and it results in a lot of downstream consequences that are shortening America’s life expectancy.

Rovner: Well, I hope when this project is all published that you put all the stories together and send them to every school of public health in the United States. That would be fairly useful. I bet public health professors would appreciate it.

Weber: Thank you.

Rovner: So it is mid-October, that means it is time for the annual KFF survey of employer health insurance. And for the first time since the pandemic, most premiums are up markedly, an average of 7% from 2022 to 2023 with indications of even larger increases coming for 2024. Now, to people like me and Joanne, who’ve been doing this for a long time, lived through years of double-digit increases in the early 2000s, 7% doesn’t seem that big, but today, the average family health insurance premium is about the same as the cost of a small car. So is there a breaking point for the employer health system? I mean, one of the things — to go back to what we were talking about at the beginning — one of the compromised ways we’ve kept the system functional is by allowing these pieces to remain in pieces. Employers have wanted to offer health insurance. It’s an important fringe benefit to help attract workers. But you’re paying $25,000 a year for a family plan, unless you’re a really big company. And even if you are a really big company, that’s an awful lot of money.

Kenen: One of the things that struck me is, we’re at a point when we’ve had a lot of strikes and reactivated labor movement, but 20 years ago, the fights were about the cost of health care. The famous Verizon strike. They were big strikes that were about health care, the cost. And right now, I’m not really hearing that too much. I’m sure it’s part of the conversation, but it’s not the top. It’s not the headline of what these strikes are about. They’re about salaries mostly and working conditions with nurses and ratios and things like that. I’m not hearing health care costs, but I sort of think we will because, yes, we are being subsidized by our employers, most of us. But you said, “What’s the breaking point?” Well, apparently there isn’t one. We’ve asked ourselves that every single year. And when do we stop doing it? No one has a good answer for that. And related is to what Lauren was just talking about, life expectancy. The lack of primary care in this country, in addition to improving our health, it would probably bring down cost. We used to spend 6 cents on the dollar on primary care, 6 cents. Other countries spend a lot more. Now, we’re down to 4.5 cents. So the stuff that keeps you well and spots problems and has somebody who recognizes when something’s going wrong in you because you’re their patient as opposed to … there’s nothing. I don’t mean that urgent care doesn’t have a place. It does, but it’s not the same thing as somebody who gives you continuity of care. So these are all related. I’ll stop. It’s a mess. Someone else can say it’s a mess now.

Rovner: It’s definitely a mess and we are not going to fix it today, but we’ll keep trying.

Kenen: Maybe next week.

Rovner: All right. Yeah, maybe next week. That is this week’s news. Now, we will play my “Bill of the Month” interview with Arielle Zionts. And then we will come back and do our extra credits.

I am pleased to welcome to the podcast my KFF Health News colleague Arielle Zionts who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Arielle, welcome to the podcast.

Arielle Zionts: Thanks for having me.

Rovner: So this month’s patient is grappling with a grave cancer diagnosis, a toddler, and some inexplicable bills from hospitals in two different states. Tell us a little bit about her.

Zionts: Sure. So Emily Gebel is from Alaska and has a husband and two young kids. She home-schools them. She really likes the outdoors, reading, foraging, and she was diagnosed with breast cancer. Just something that makes me so sad is she found out when she was basically breastfeeding because she felt a lump. And then when she was diagnosed, her baby was asleep in her arms when she got that call. So it just really shows what it’s like to be a mom and to have cancer. She was living in Juneau at the time. Her friends who’ve had cancer suggested [they] wanted to go to a bigger city. Whether it’s true or not, the idea was, OK, bigger cities are going to have bigger care. Juneau is not a big city, and you cannot drive there. You have to take a ferry or you have to fly in, and this is the capital of Alaska. So that might …

Rovner: Yes, I’ve been there. It’s very picturesque and very small and very hard to get to.

Zionts: Yeah, so that might be surprising for some people. The closest major American city is Seattle. So she went there for her surgery and then she decided to have chemo, and she opted for this special type of chemo that uses lower dose, but more frequent doses. The idea is that it creates less of the side effects, and she went to this standalone clinic in Seattle, flying there every week. It’s not a quick flight. It can take up to two hours and 45 minutes. And that just got really tiring. I mean, physically …

Rovner: And she’s got kids at home.

Zionts: Yes, physically and mentally and just taking up time. So she decided to switch to the local hospital in Juneau. So they had bills from the first clinic in Seattle, and then they got some estimates from the one in Juneau and then finally got a bill from there as well.

Rovner: Yes, as we say, “Then the bill came.” And, boy, there was a big difference between the same chemotherapy in Seattle and in Juneau, Alaska, right?

Zionts: I compared two of Emily’s treatments that used a similar mix of drugs and also had overlapping non-drug charges, such as how much it costs for the first hour of treatment, subsequent hours. And in the Seattle clinic, one round cost about $1,600. And then in Juneau it cost more than $5,000, so more than three times higher. And we were able to look at specific charges. So that first hour of chemo was $1,000 in Juneau, which is more than twice the rate in the Seattle clinic. There was a drug that cost more than three times the price at the clinic. And then even the cheaper charges were more expensive. So the hospital charged $19.15 for Benadryl, which is about 22 times the price at the clinic, which was 87 cents.

Rovner: Now to be clear, the Gebel family seems to have pretty comprehensive insurance. So this case wasn’t as much about their out-of-pocket costs as some of the other Bills of the Month that we’ve covered, but they did want to know why there was such a big difference, and what did they, and we find out?

Zionts: Yeah. So we started the story for NPR, we basically started saying, “Hey, this is a little different than the other ones because the family has met their maximum out-of-pocket.”

Rovner: For the year?

Zionts: Yes. Once you pay a certain amount of money for the year, your insurance will cover everything, and that can be a high number. But if you have cancer, cancer’s expensive, so you will probably hit it at some point. By the time she switched her treatment to Juneau, she had met that, so she wouldn’t actually owe anything.

Rovner: But what did they find out nevertheless, about why it costs that much more in Juneau than it did in Seattle?

Zionts: Yes. So Jered, her husband, he is somewhat of a self-taught medical billing expert. He gained this knowledge by listening to “Bill of the Month” and then reading some books about this. I mean, at first, he thought maybe they would owe money, but then he learned they wouldn’t. But he still didn’t think it was fair. I mean, he didn’t think it was fair for the insurance companies. And he did catch two errors. One of them, an estimate, was wrong. The hospital said, “Oh, it looks like there was a computer error,” and that was lowered. And then when it came for the actual bill, there was a coding error. It made one of the drugs not covered when it should have been. So that would’ve actually left them out-of-pocket costs. So he was able to lower an estimate, lower the bill. But again, even with those changes, it was still so much more expensive. And that’s when I called some experts and someone’s gut reaction or initial hypothesis might be, “Well, of course, it’s more expensive in Alaska. Alaska is small, it’s remote. I mean, it’s just going to cost more to ship things there. You need to pay doctors more to entice them to live there.”

Rovner: And it costs more for doctors to live there anyway, right?

Zionts: Yes.

Rovner: The cost of living is high in Alaska.

Zionts: Yes. The expert I spoke with, an economist who has studied this issue. He said, “Yes, that is part of it.” Like you said, everything is more expensive in Alaska, but even when accounting for that, the prices are even higher. So the growth of cost in the health care sector in Alaska is higher than the growth of overall cost. And he listed some policies or trends that might explain that. There’s one that really stood out, which is something called the “80th percentile rule,” but it was meant to contain cost for when you’re seen by out-of-network providers. And it seems that it may have actually backfired, and the state is considering repealing that. But as Elisabeth Rosenthal, one of our editors at KFF Health News, and she’s written an entire book about this, as she said, “This is how our health system works. There’s no law saying, this is how much you can upcharge for some intrinsic value of a medicine or of a service. So hospitals can do what they want.” So …

Rovner: And we should point out, I mean, this is not a for-profit hospital, right? It’s owned by the city.

Zionts: Yes. This is a nonprofit hospital owned by the city, and they don’t get a ton of money from the city or state, which is interesting though. So they’re really getting their funding from the services they provide. And the hospital said they try to make it fair by comparing it to wholesale costs, what other hospitals in the region are charging. But they also said, “Yes, we do need to account for the higher costs.”

Rovner: So what’s the takeaway here? I mean, basically what it costs is going to depend on where you live?

Zionts: Basically, what we’ve learned from all these Bill of the Months is that it’s going to vary depending on what facility you go to. And that could be within one city, the prices could vary. And then you might see some more variation between states and especially in states where the cost of living is higher or it’s more remote.

Rovner: Of which Alaska is both.

Zionts: Yes. And actually, something to add is that the amount of money that this hospital has to spend to fly in doctors and nurses and also just staff, even nonmedical staff, they spent nearly $11 million last year to transport them and pay them because they don’t have enough local people. And the other takeaway, though, is that yes, this can be explained, but also, it’s unexplainable in the sense that our health care system doesn’t have some magic formula or some hard rules about what is, quote, “fair.”

Rovner: Yes, at least when it comes to Medicare, Congress has been trying to do that for, oh, I don’t know, about 50 years now. Still working on it. Arielle Zionts, thank you very much for joining us.

Zionts: Thank you for having me.

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

Ollstein: I did a piece by my former colleague Angela Hart for KFF Health News, and it’s about street medicine. So teams of doctors working with unhoused people, and this is profiling mainly in Northern California, but it’s sort of discussing this across the country. And in addition to the really very moving personal stories that she found in her reporting, she also talked about some of the structural stuff that is supporting the expansion of this kind of health care. And so California was already putting a lot of money into health care services for the homeless, but in hospitals and in clinics, they were finding that people just aren’t able to come in. Whether it’s because they don’t want to leave all of their earthly possessions unguarded or because they can’t get the transportation or whatever. And so that money’s now being redirected into having the doctors go to them, which seems to be successful in some ways, but the depth of health care problems is just so deep. And …

Rovner: But also, really the importance of primary care.

Ollstein: Absolutely. And so what they’re finding is just a lot of pregnancies and problems with pregnancy in the homeless population. And so they’re doing more services around that and more offering contraception and prenatal care for the people who are already pregnant. It’s very sad, but somewhat hopeful. And the other more structural thing is changing rules so that doctors can get reimbursed at a decent rate for providing street medicine as opposed to in brick-and-mortar facilities.

Rovner: Thanks. Lauren?

Weber: So I also have a KFF special from my former colleagues, Markian [Hawryluk] and Renu [Rayasam]. It’s just a great piece. It’s called “Doctors Abandon a Diagnosis Used to Justify Police Custody Deaths. It Might Live On, Anyway.” So what the piece does is it interviews the doctor who helped debunk what excited delirium is for his medical organization, but it reveals that that may not help in terms of court cases that have already been decided and in terms of science in general. And I think it’s so fascinating because what this piece does is it gets at what happens when flawed science then is used for lawsuits and consequential things for many, many years to come. I think we’ve seen a lot of stories this year about flawed science and what the actual ramifications are after, and this is clearly horrible ramifications here. And it’s just kind of a fascinating question of how does that ever get made right and how do things slowly or ever go back to what they should be after flawed science is revealed? So really, really great work from the team.

Rovner: Yeah, it’s really good piece. Well, keeping with the theme of choosing stories by our former colleagues. Mine is from a former colleague at NPR, Jeff Brady, and it’s “How Gas Utilities Used Tobacco Tactics to Avoid Gas Stove Regulations.” And if you don’t know what that refers to, I have a book or several for you about the huge sums of money that the tobacco industry paid over many decades to have captive, scientific, quote-unquote, “experts” counterclaims that smoking is bad for your health. It turns out that the gas stove industry likewise knew that gas stoves were worse for your health than electric ones, and that those vent hoods don’t really take care of all the problems of the things that gas stoves emit. And that it also paid for studies intended to muddy the waters and confuse both customers and regulators. It’s a pretty damning story, and I say that as someone who is very much attached to my gas stove but am now having second thoughts.

OK, that is our show for this week. 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 amazing and patient engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me holding down the fort at X, I’m @jrovner or @julierovner at Bluesky and Threads. Joanne, where are you these days?

Kenen: I’m more on Threads, @joannekenen1. I still have a Twitter account, @JoanneKenen, where I’m not very active.

Rovner: Alice?

Ollstein: I am @AliceOllstein on X and @alicemiranda on Bluesky.

Rovner: Lauren?

Weber: I’m @LaurenWeberHP on X, the HP stands for health policy, as I like to tell people.

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.

Congress returns from its August recess with a long list of things to do and not a lot of time to do them. The fiscal year ends Sept. 30, and it’s possible that lawmakers will fail to finish work not only on the annual appropriations bills, but also on any short-term spending bill to keep the government open.

Meanwhile, Medicare has announced the first 10 drugs whose prices will be negotiated under the Inflation Reduction Act of 2022. Exactly how the program will work remains a question, however. Even how the process will begin is uncertain, as drugmakers and other groups have filed lawsuits to stop it.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs of Stat, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Alice Miranda Ollstein of Politico.

Panelists

Rachel Cohrs
Stat News

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Read Rachel's stories

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Among the takeaways from this week’s episode:

• Hard-line Republicans are refusing to back even a temporary government spending bill, suggesting a government shutdown looms — with repercussions for health programs. While the Senate and House have come to intra-chamber agreements on subjects like community health center funding or even have passed spending bills, Congress as a whole has been unable to broker an overarching deal.
• A coalition of House Republicans is falsely claiming that global HIV/AIDS funding through PEPFAR promotes abortion and is battling efforts to extend the program’s funding. PEPFAR is a bipartisan effort spearheaded by then-President George W. Bush and credited with saving millions of lives.
• The PEPFAR fight underscores the dysfunction of the current Congress, which is struggling to fund even a highly regarded, lifesaving program. Another example is the months-long blockade of military promotions by a freshman Republican senator, Alabama’s Tommy Tuberville, a member of the Senate Armed Services Committee. His objections over an abortion-related Pentagon policy have placed him at odds with top military leaders, who recently warned that his heavy-handed approach is weakening military readiness.
• The Biden administration recently announced new staffing requirements for nursing homes, as a way to get more nurses into such facilities. But how long will compliance take, considering ongoing nursing shortages? And the drug industry is reacting to the news of which 10 drugs will be up first for Medicare negotiation, with much left to be sorted out.
• In abortion news, a Texas effort to block patients seeking abortions from using the state’s roads is spreading town to town — and, despite being dubiously enforceable, it could still have a chilling effect.

Also this week, Rovner interviews Meena Seshamani, who leads the federal Medicare program, about the plan to start negotiating drug prices.

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

Julie Rovner: JAMA Health Forum’s “Health Systems and Social Services — A Bridge Too Far?” by Sherry Glied and Thomas D’Aunno.

Alice Miranda Ollstein: The Washington Post’s “Heat’s Hidden Risk,” by Shannon Osaka, Erin Patrick O’Connor, and John Muyskens.

Rachel Cohrs: The Wall Street Journal’s “How Novartis’s CEO Learned From His Mistakes and Got Help From an Unlikely Quarter,” by Jared S. Hopkins.

Joanne Kenen: Politico’s “How to Wage War on Conspiracy Theories,” by Joanne Kenen, and “Court Revives Doctors’ Lawsuit Saying FDA Overstepped Its Authority With Anti-Ivermectin Campaign,” by Kevin McGill.

Also mentioned in this week’s episode:

• The Washington Post’s “Highways Are the Next Antiabortion Target. One Texas Town Is Resisting,” by Caroline Kitchener.
• KFF Health News’ “Biden Administration Proposes New Standards to Boost Nursing Home Staffing,” by Jordan Rau.
• Stat’s “The Curious Case of J&J’s Stelara, The Unluckiest Drug on Medicare’s List,” by Rachel Cohrs.

Click to open the transcript

Transcript: Welcome Back, Congress. Now Get to Work.

[Editor’s note: This transcript, generated using transcription software, 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, Sept. 7, 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 Rachel Cohrs of Stat News.

Rachel Cohrs: Good morning.

Rovner: Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Joanne Kenen: Hi, everybody.

Rovner: And Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Hello.

Rovner: Later in this episode, we’ll have an interview with Meena Seshamani, who runs the Medicare program for the federal government, with an update on the Medicare drug negotiation debate as, we’ll discuss, the first 10 drugs that will be subject to negotiation were announced last week. But first, this week’s news. So Labor Day is behind us, and Congress is back — sort of. The Senate is back. The House returns next week. And there are lots of questions to be answered this fall, starting with whether or not Congress can finish the annual spending bills before the start of fiscal 2024 on Oct. 1. Spoiler: They cannot. But there’s also a real question whether Congress can even pass a short-term bill to keep the government running while lawmakers continue to work on the rest of the appropriations. As of now, what do you guys think are the odds that we’re going to end up with some kind of government shutdown at the end of the month?

Ollstein: Well, it’s whether it happens at the end of the month or at the end of the year, really. Folks seem pretty convinced that it will happen at some point. It could be short-lived. But, yeah, like you said, you have some hard-line House Republicans who say they won’t support even a temporary stopgap bill without spending cuts, policy changes, without sort of extracting some of their demands from leadership. And you could work around that in the House by cobbling together a coalition of Republicans and Democrats. But that also puts [House Speaker Kevin] McCarthy’s leadership in jeopardy. And so, we’re having sort of the same dynamic play out that we saw earlier this year, trying to navigate between the hard-line House Republicans and, you know, the more vulnerable swing districts’ members. So it’s … tough.

Rovner: Yeah, it’s the Republicans from districts that [President Joe] Biden won … basically.

Ollstein: Yeah. And so you have this weird game of chicken right now where both the House and Senate are trying to pass whatever they can to give themselves more leverage in the ultimate House-Senate negotiations. They think, OK, if we pass five bills and they only pass one, you know, then we have the upper hand. So we’ll see where that goes.

Rovner: It’s funny, because the Senate has been a well-oiled machine this year on the spending bills, which is unusual. I was about to say I will point out that there are two women: the chairman and ranking member. But that’s actually also true in the House. We do have women running the appropriations process this year. But I was amused that Kevin McCarthy, sometime during August, a couple of weeks ago, said, you know, very confidently, well, we’ll pass a short-term spending bill. You know, we won’t let the government shut down. And by the next day, the hard-line Republicans, the right wing, were saying, yeah, no you won’t. You’re going to have to deal with us first. And, obviously, there’s lots of health stuff that’s going to get caught up in that. The end of the fiscal year also marks the end of funding authority for a number of prominent programs. This is not the same as the appropriations programs whose authorizations lapse can continue, although things can get complicated. PEPFAR, the two-decade-old bipartisan program that provides AIDS and HIV prevention and treatment around the world, is one of those programs that, at least as of now, looks pretty stuck. Alice, is there any movement on this? We’ve talked about it before.

Ollstein: Not yet. So the latest we know, and we got this last night, is that [Foreign Relations Committee] Chairman [Bob] Menendez in the Senate is floating a new compromise. Basically, supporters of PEPFAR have been pushing for the full five-year standard reauthorization. And a coalition of House Republicans who are claiming that PEPFAR money is going to abortion say they want no reauthorization at all. They just want the program to sort of limp along through appropriations. So between five years and zero, Menendez is now suggesting a three-year extension. There is a huge desire not to just have the one-year funding patch because that would kick all of this into the heat of the 2024 season. And if you think the debate is ugly now over abortion and federal spending, just wait until 2024.

Kenen: I mean, this … [unintelligible] money … it’s saved tens of millions of lives — and with bipartisan support in the past.

Rovner: It was a Republican initiative.

Kenen: Right. It was President Bush, George the second.

Rovner: George W. Bush. Yeah.

Kenen: And they’re not saying they’re actually going out and using the AIDS dollars to conduct, to actually do abortions. They’re saying that there’s, you know, they’re in the world of abortion and they’re promoting abortion, etc., etc. So the conversation gets really, really, really, really muddled. Under U.S. law, they cannot use U.S. dollars for abortion under the Hyde Amendment, you know, all sorts of other foreign policy rules. So it’s hard to overstate how important this program has been, particularly in Africa. It has saved millions and millions of lives. And I think Alice might have broken the story originally, but it got caught up in abortion politics, and it caught people by surprise. This is not something … everything in Washington gets caught up in politics, except this! So I think it’s been quite shocking to people. And it’s, I mean — life-and-death sounds like a, you know, it’s a Washington cliché — this is life-and-death.

Ollstein: Yeah, absolutely. And, you know, even though the program won’t shut down if they don’t manage to get a reauthorization through, you know, I talked to people who run PEPFAR services in other countries, and they said that, you know, having this year-to-year funding and instability and uncertainty — you know, they won’t be able to hire, they won’t be able to do long-term planning. They said this will really undermine the goal to eliminate HIV transmission by 2030.

Cohrs: Oh, I actually did just want to jump in about another Sept. 30 deadline, because there was a big development this week. I know we were just talking about long-term planning. There is funding for community health centers that’s expiring at the end of September as well. DSH cuts could go into effect for hospitals. We do this routine every so often, but the House is actually more in step than the Senate on this issue; they released — at least Republicans released — a draft legislation, where all three committees of jurisdiction are in agreement about how to proceed. There are some transparency measures in there.

Rovner: The three committees in the House.

Cohrs: In the House. Yes, yes, we’re talking about the House. Yeah. So, they have reconciled their differences here and are hoping to go to the floor this month. So, I think they are out of the gate first, certainly with some sort of longer-term solution here. Again, could get punted. But I think it is a pretty big development when we’re talking about these extenders that the industry cares about very much.

Kenen: Congress is so polarized that it can’t even do the things that it agrees on. And we have seen this before where CHIP [Children’s Health Insurance Program] got caught up a few years ago. Community health clinics have gotten caught right in that same bill, right? But, you know, we really have this situation where it’s so dysfunctional they can’t even move fully on things that everybody likes. And community health centers date back to the early ’60s. However, they got a really big expansion, again, under second President Bush. And they’re popular, and they serve a need, and everybody likes them.

Rovner: They got a bigger expansion under the Affordable Care Act.

Kenen: Right, but they, you know — but I think that the Bush years was like the biggest in many years. And then they got more. So again, I mean, are they going to shut their doors? No. Is it going to be a mess? It is already a mess. They can’t — they don’t know what’s coming next. That’s no way to run a railroad or a health clinic.

Rovner: All right, well, one more while we’re on the subject of abortion-related delays: Alabama Sen. Tommy Tuberville is still blocking Senate approval of routine military promotions to protest the Biden administration’s policy of allowing funding for servicewomen and military dependents to travel for abortions if they’re posted to states where it’s banned. Now, the secretaries of the Army, Navy, and Air Force are joining together to warn that Tuberville’s hold is threatening military readiness. Tuberville apparently went on Fox News last night and said he’s got more people who are coming to support him. Is there any end to this standoff in sight? I mean, people seem to be getting kind of upset about it. It’s been going on since, what, February?

Ollstein: Yeah, there is not yet an end in sight. So far, all of the attempts to pressure Tuberville to back down have only hardened his resolve, it seems, you know, and he’s gone beyond sort of his original statement of, you know, all of this is just to get rid of this policy that doesn’t pay for abortions; it just allows people to travel out of state if they’re stationed — they don’t get to choose where they’re stationed — if they’re stationed somewhere where abortion is not legal or accessible. And so now he’s making claims about other things in the military he considers too woke. He’s criticized some of these individual nominees themselves that he’s blocking, which was not sort of part of the original stand he took. And so, it’s tough, and there isn’t enough floor time to move all of these and go around him. And so this pressure campaign doesn’t seem to be really making any headway. So I don’t really see how this gets resolved at this point.

Kenen: Except that other Republicans are getting a little bit more public. I mean, they were sort of letting him run out for a while. And there’s more Republicans who are clearly getting enough of this. But I mean, unless McConnell can really get him to move — and we don’t know what’s gone on behind closed doors, but we’re certainly not seeing any sign of movement. In fact, as Alice said, he’s digging in more. I mean, like, Marines and woke are not the two words you usually hear in one sentence, but in his worldview, they are. So, I think it’s unprecedented. I mean, I don’t think anyone’s ever done this. It’s not like one or two people. It’s like the entire U.S. military command can’t move ahead.

Rovner: I’ve been doing this a very long time, and I don’t remember anything quite like this. Well, the one thing that we do expect to happen this fall is legislation on — and Rachel, you were referring to this already — sort of health care price transparency and PBMs, the pharmacy benefit managers. Where are we with that? They were supposed to work on it over the August break. Did they?

Cohrs: They were supposed to work on it. The House was clearly working on it and reconciling some of their differences. They’re planning to introduce legislative text on Friday. So, I think Democrats aren’t on board yet, so things could change from the draft they had been circulating early this week. But again, Republicans don’t really need Democrats to move forward, at least in the House. The Senate has been pretty quiet so far. Not to say that no work has gone on, but they certainly weren’t ready for the rollout in the same way that the House was. You know, I think there are still some big questions about, you know, what they’re planning to accomplish with insulin policy, how they’re planning to fit together this jigsaw puzzle of PBM transparency and reforms that have come out of different committees. And I think it’ll come down to [Senate Majority Leader] Sen. Schumer making some tough choices. And from my understanding, that hasn’t quite happened yet. But if the actual showdown happens November, December, they still have some time.

Rovner: Yeah. Now they’re not going out early. They’re clearly going to be fighting over the appropriation. So, the legislative committees have plenty of time to work on these other things. All right. Well, let’s turn to Medicaid for a moment. The quote-unquote “unwinding” continues as states move to redetermine who remains eligible for the program and who doesn’t following the pandemic pause. As predicted, it’s been a bit of a bumpy road. And now it seems a bunch of states have been incorrectly dropping children from Medicaid coverage because their parents are no longer eligible. That’s a problem because nationwide, income limits for children’s eligibility is higher than parents’. In some states, it is much higher. I remember after Hurricane Katrina, in Louisiana, parents were only eligible if they earned 15% of poverty. Somebody said 50, and the Medicaid director said, “No, 15, one-five.” Whereas kids are eligible to, I believe it’s 200% of poverty. And I think that’s a national level.

Kenen: Now, in some states it’s higher.

Rovner: Yes. But I say this is happening in a bunch of states because federal government won’t tell us how many or which ones. We do know it’s more than a dozen, but this is the second time the administration has admonished states for wrongly canceling Medicaid coverage. And they wouldn’t say which states were involved at that time either. Is this an effort to keep this as apolitical as possible, given that the states most likely to be doing this are red states who are trying to remove ineligible people from Medicaid as fast as they can, that they’re trying to sort of keep this from becoming a Republican versus Democrat thing.

Ollstein: It seems like, from what we’re hearing, that the administration is really wary of publicly picking a fight with these states. They want the states to work with them. And so, even if the states are going about this in a way they think is totally wrong, they don’t want to just put them publicly on blast, because they think that’ll make them, again, double down and refuse to work with the government at all. And so, they’re trying to maintain some veneer of cooperation. But at the same time, you’re having, you know, millions of people, including children, falling through the cracks. And so, you know, we have sort of this sternly-worded-letter approach and we’ll see if that accomplishes anything, and if not, you know, what measures can be taken. You know, the administration also created a way for states to hit pause on the process and take a little more time and do a little more verification of people’s eligibility. And some — a couple states — have taken advantage of that, and it’s been successful in, you know, having fewer people dropped for paperwork reasons, but it’s not really happening in the states where it sort of most needs to happen, according to experts.

Rovner: The administration has had fingers pointed at it, too, because apparently it approved some of these plans from the states that were going to look at total family income without realizing that, oh, that meant that kids who are still eligible could end up losing coverage because their parents are no longer eligible.

Kenen: Right. And I also read something yesterday that in some cases it’s sort of a technical issue rather than a “how much outreach and what your intentions are,” that it’s a programing issue, which is related to what Julie just said about the plan. So, it’s not that these states set about to drop these kids, and there may be some kind of goodwill to fix it, in which case you don’t want to get in — and I don’t know that it’s 100% red states either. So —

Rovner: No, that’s clear. We assume, because they’re the ones going fastest, but we do not know.

Kenen: Right, so that there seems to be some kind of — the way it was set up, technically, that can be remedied. And if it’s a technical fix as opposed to an ideological fight, you don’t really want to — you want to figure out how to reprogram the computer or whatever it is they have to do and then go back and catch the people that were lost. So, they’ve been pretty low-key about politicizing rewinding in general. But on the kids, I think they’re going to be even more — CHIP passed, another thing with bipartisan support that’s a mess. I mean, it seems to be the theme of the day. But, you know, CHIP was created on a bipartisan basis, and it’s always been sustained on a bipartisan basis. So, I think that the issue, I don’t know how technically easy it is to fix, but there’s a big difference in how the administration goes after someone that’s intentionally doing something versus someone who wrote their computer programmer set something up wrong.

Rovner: Well, we will definitely keep on this one.

Kenen: But it’s a big mess. It’s a lot of kids.

Rovner: It is a big mess. And let’s turn to the thing that is not bipartisan in Congress, and that is —

Kenen: That’ll be a bigger mess.

Rovner: — Medicare drug negotiations. Yes. While we were away, the federal government released its much-anticipated list of the 10 brand-name drugs that will be the first tranche up for potential price negotiation. I say potential, because the companies have the option of negotiating or not — sort of — and because there are now, I think, nine lawsuits challenging the entire program. My interview with Medicare administrator Meena Seshamani will get into the nuts and bolts of how the negotiation program is supposed to work. But Rachel, tell us a little bit about the drugs on the list and how their makers are trying to cancel this entire enterprise before it even begins.

Cohrs: Sure. So, a lot of these drugs that we’re seeing on the list are blood thinners. Some are diabetes medications. There are drugs for heart failure, rheumatoid arthritis, Crohn’s disease, and there’s also a cancer treatment, too. But I think overall, the drugs were chosen because they have high cost to Medicare. And it was —

Rovner: So that either could mean a lot of people use an inexpensive drug —

Cohrs: Yes.

Rovner: — or a few people use a very expensive drug.

Cohrs: Correct. And it was Wall Street’s favorite parlor game to try to guess what drugs were going to be on this list of 10 drugs that are going to be the guinea pigs to go through this program for the very first time. But it was interesting, because there were a few surprises. Medicare officials were using newer data than Wall Street analysts had access to. So, there were a couple drugs, especially further down on the list, that people used more in the period CMS [Centers for Medicare & Medicaid Services] was studying than had been used previously. So, we saw a couple very interesting instances of a drug being chosen for the list, even though it just kind of fell through the cracks. It was J&J’s [Johnson & Johnson’s] Stelara. It’s a Crohn’s disease treatment, and it does have competition coming in the market soon, but just because of a fluke of kind of when it was approved by the FDA, it just missed cutoffs for some of these exemptions and is now subject to some pretty significant discounts through the program.

Rovner: We’ll link to your very sad story about Stelara.

Cohrs: Sad for the company, but not sad for the patients who will hopefully be paying less for this medication. And there’s also the case of Astellas [Pharma Inc.], which makes a prostate cancer drug that’s very expensive. A lot of people expected that to be selected, but actually wasn’t. And Astellas had sued the Biden administration already before the list came out and then had to withdraw their lawsuit yesterday because their argument that they were going to be harmed by this legislation was made much weaker by the fact that they weren’t selected for this first year of the program. So, who knows? They could dust off their arguments a year from now or two years from now. But it was interesting to see kind of some of these surprises on the list. Again, there are still several, like you mentioned, outstanding lawsuits in several different jurisdictions. I think the main one that we’re watching is by the [U.S.] Chamber of Commerce, which requested a preliminary injunction by the end of this month. So, we’ll see if that comes through. But it is a very long road to 2026. There might be a new administration by then. So, I think there are still a lot of questions about whether this reaches the finish line. But I think it’s a very important step for CMS to get this list out there in the world.

Rovner: So, I spent some time digging in my notes from earlier years, and I dug up notes from an interview I did on Aug. 26 with a spokesperson from the drug industry about how the Medicare drug benefit, quote, “impact the ability of companies to research new medicines. And if that happens, the elderly would be the ones hurt the most.” That quote, by the way, was from Aug. 26 of 1987. Some things truly never change. But is this maybe, possibly, the beginning of the end of drugmakers being able to charge whatever they want in the United States? Because it’s the only country where they can.

Cohrs: Oh, they can still charge whatever they want. This law doesn’t change that. It just changes the fact that Medicare won’t be paying whatever drugmakers happen to charge for an unlimited amount of time. Like, they can still charge whatever they want to Medicare for as long as they can get on the market before they’re selected for this negotiation program. But certainly there could be significant cost — significant savings to Medicare, even if those prices are high. And it’s just kind of a measure that forces price reductions, even if the generic or biosimilar market isn’t functioning to lower those prices through competition.

Kenen: Right. And it’s only Medicare. So, people who are not on Medicare — insurance companies also negotiate prices, but they’re not the government. It’s different. But I mean, these drugs are not going to start being, you know, three bucks.

Rovner: But they may stop being 300,000.

Kenen: Well, we don’t know, because there are some people who think that if Medicare is paying less, they’re going to charge everybody else more. We just don’t know. We don’t know what their behavior is going to be. But no, this does not solve the question of affordability of medication in the United States.

Rovner: The drug companies certainly think it’s the camel’s nose under the tent.

Kenen: They have some medicine for camels’ noses that they can charge a lot of money for, I’m sure.

Rovner: I bet they do. While we are on the subject of things that I have covered since the 1980s, last week the Biden administration finally put out its regulation requiring that nursing homes be staffed 24/7/365 by, you know, an actual nurse. One of the first big reconciliation bills I covered was in 1987 — that was a big year for health policy — and it completely overhauled federal regulation of nursing homes, except for mandating staffing standards, because the nursing homes said they couldn’t afford it. Basically, that same fight has been going on ever since. Except now the industry also says there aren’t enough nurses to hire, even if they could afford it. Yet patient advocates say these admittedly low staffing ratios that the Biden administration has put out are still not enough. So, what happens now? Is this going to be like the prescription drug industry, where they’re going to try to sue their way out of it? Or is it going to be more like the hospital transparency, where they’re just not going to do it and say, “Come and get us”?

Kenen: My suspicion is litigation, but it’s too soon to know. I assume that either one of the nursing home chains — because there are some very big corporations that own a lot of nursing homes — there are several nursing home trade industry groups, for-profit, nonprofit. Does one owner — is in an area where there is a workforce shortage, because that does exist. I mean, I’d be surprised if we don’t see some litigation, because when don’t we see that? I mean, it’s rare. That’s the norm in health care, is somebody sues. Some of the workforce issues are real, but also this proposal doesn’t go into effect tomorrow. It’s not like — but I mean, there are issues of the nursing workforce. There are issues about not just the number of nurses, but do we have them in the right places doing the right jobs? It’s not just RNs [registered nurses]; there are also shortages of other direct care workers. I did a story a few months ago on this, and there are actually nursing homes that have closed entire wings because they don’t have enough staff, and those are some of the nonprofits. There are nursing issues.

Rovner: And a lot of nursing home staff got sick at the beginning of the covid pandemic, and many of them died before there were good treatments. I mean, it’s always been a very hard and not very well-paid job to care for people in nursing homes. And then it became a not very pleasant, not very well-paid, and very deadly job. So I don’t think that’s probably helping the recruitment of people to work in nursing.

Kenen: Right, but the issue — I think a lot of people, when you have your first family experience with a nursing home or, you know, or those of us reporters who hadn’t been familiar with them until we went and did some stories on them, I think people are surprised at how little nursing there actually is. It’s nurses’ aides; it’s, you know, what they used to call licensed practical nurses or nursing assistants; and CNAs, certified nursing assistants. They’re various; different states have different names. But these are not four-year RNs. The amount of actual nursing — forget doctors. I mean, there’s just not a lot of RNs in nursing homes. There’s not a lot of doctors who spend time in nursing homes. A lot of the care is done through people with less training. So, this is trying to get more nurses in nursing homes. And there’s been a lot of stories about inadequate care. KFF Health News — I think it was Jordan Rau who did them. There have been some good stories about particularly nights and weekends, just really nobody there. These are fragile people. And they wouldn’t be in a nursing home if they weren’t fragile people. There are a lot of horror stories. At the same time, there are some legitimate — How fast can you do this? And how well can you do it? And can you do it across the country? I mean, it’s going to take some working out, but I don’t think anybody thinks that nursing home care in this country is, you know, a paragon of what we want our elders to experience.

Rovner: And the nursing home industry points out, truthfully, that most nursing home payments now come from Medicaid, because even people who start out being able to afford it themselves often run out of money and then they end up — then they qualify for Medicaid. And Medicaid in many states doesn’t pay very much, doesn’t pay nursing homes very much. So it’s hard for these companies. We’re not even talking about the private equity companies. A lot of nursing homes operate on the financial edge. I mean, there are —our long-term care policy in this country is, you know, just: What happens, happens, and we’ll worry about it later. And this has been going on for 50 years. And now we have baby boomers retiring and getting older and needing nursing home care. And at some point, this is all going to come to a head. All right. Well, let us turn to abortion. This week marks the second anniversary of the Texas abortion ban, the so-called heartbeat bill, that bans most abortion and lets individuals sue other individuals for helping anyone getting an abortion, which the Supreme Court, if you’ll recall, allowed to take effect months before it formally overturned Roe v. Wade. And, I guess not surprisingly, Texas is still in the news about abortion. This time. The same people who brought us Texas SB 8, which is the heartbeat bill, are going town by town and trying to pass ordinances that make it illegal to use roads within that town’s borders to help anyone obtain an abortion. They’re calling it abortion “trafficking.” Now, it’s not only not clear to me whether a local ordinance can even impact a state or an interstate highway, which is what these laws are mostly aimed at; but how on earth would you enforce something like this, even if you want to?

Ollstein: So, my impression is that they do not want to. These are not meant to be practical. They are not meant to be enforced, because how would you do it other than implementing a very totalitarian checkpoint system? This is meant to —

Rovner: Yes, have you been drinking and are you on your way to get an abortion?

Ollstein: Right. Right, right, right. So, it seems like the main purpose is to have a chilling effect, which it very well could have, even if it doesn’t stand up in court. You know, you also have this situation that we’ve had play out in other ways, where people are challenging laws in courts for having a chilling effect, and courts are saying, look, you have to wait till you actually get prosecuted and challenge it, you know, do an as-applied challenge. If you can’t challenge unless there’s a prosecution but there’s no prosecutions, then you sort of just have it hanging over your head like a cloud.

Kenen: Like Alice said, there’s no way you could do this. Like, what do you do, stop every car and give every person a pregnancy test? Are you going to, like, have, you know, ultrasounds on the E-ZPass monitors? Like, you go through it, it checks your uterus. So, I mean, it’s just not — you can’t do this. But I think one of the things that was really interesting in one of the stories I read about it, I think it was in The Washington Post, was that when they interviewed people about it, they thought it was trafficking, like really trafficking, that there were pregnant woman being kidnapped and forced to have an abortion. So even if you’re pro-choice, you might say, “Oh, I’m against abortion trafficking. I mean, I don’t want anyone to be forced to have an abortion.” You know, so, it’s — the wording and the whole design of it is, they know what they’re doing. I mean, they want to create this confusion. They want to create a disincentive. There’s no way — you know, radar guns? I mean, it’s just, there’s no way of doing this. But it is part of the effort to clamp down even further on a state that has already really, really, really clamped down.

Rovner: Although, I mean, if one could sue and if one could then know about something that’s happening and then you could presumably take the person to court and say, I know you were pregnant and now you’re not, and somebody took you in a car to New Mexico or whatever …

Kenen: You can’t even prove — how do you prove that it wasn’t a miscarriage?

Rovner: That’s —

Kenen: Right? I mean …

Rovner: I’m not saying — I’m not talking about the burden of proof. I’m just saying in theory, somebody could try to have a case here. I mean, but we certainly know that Texas has done a very good job creating a chilling effect, because we still have this lawsuit from the women who were not seeking abortions, who had pregnancy complications and were unable to get health-saving and, in some cases, lifesaving care promptly. And that’s still being litigated. But meanwhile, we have, you know, just today a study out from the Guttmacher Institute that showed that despite how well these states that are banning abortion have done in banning abortion, there were presumably more abortions in the first half of 2023 than there were before these bans took effect, because women from ban states were going to states where it is not banned. And there has been, ironically, better access in those states where it is not banned. I can’t imagine that this is going to please the anti-abortion community. One would think it would make them double down, wouldn’t it?

Ollstein: We know that people are leaving their states to obtain an abortion. We also know that that’s not an option for a lot of people, and not just because a lot of people can’t afford it or they can’t take time off work, they can’t get child care — tons of reasons why somebody might not be able to travel out of state. They have a disability, they’re undocumented. We also have — it’s become easier and easier and easier to obtain abortion pills online through, you know, a variety of ways: individual doctors in more progressive states, big online pharmacies are engaged in this, overseas activist groups are engaged in this. And so, you know, that’s also become an option for a lot of people. And anti-abortion groups know that those are the two main methods. People are still continuing to have abortions. And so, they’re continuing to just throw out different ways to try to either, you know, deter people or actually block them from either of those paths.

Rovner: This fight will also continue on. So, that is this week’s news. Now we will play my interview with Meena Seshamani, and then we will come back and do our extra credits.

Hey, “What the Health?” listeners, you already know that few things in health care are ever simple. So, if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health care journalist and friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you listen to your podcasts.

I am pleased to welcome back to the podcast Dr. Meena Seshamani, deputy administrator and director of the Center for Medicare at the Centers for Medicare & Medicaid Services. Meena was with us to talk generally about Medicare’s new prescription drug negotiation program earlier this summer. But now that the first 10 drugs subject to negotiation have been announced, we’re pleased to have her back. Welcome.

Meena Seshamani: Thank you for having me.

Rovner: So, remind our listeners, why hasn’t Medicare been able to negotiate drug prices until now — they negotiate prices of everything else — and what changed to make that happen?

Seshamani: That’s right. It was because of the Medicare law that Medicare did not have the ability to negotiate drugs. And thanks to the new drug law, the Inflation Reduction Act, now Medicare has the ability to negotiate the prices of the highest-cost drugs that don’t have competition. And that is part of the announcement that we had on what the first 10 drugs are that have been selected.

Rovner: So, as you say, last week, for the first time and in time for the Sept. 1 deadline, Medicare announced the list of the first 10 drugs that will be part of the first round of price negotiations. Why these 10 specifically? I imagine it’s not a coincidence that the list includes some of the drugs whose ads we see the most often on TV: drugs like Eliquis, Xarelto, and Jardiance, which I of course know how to pronounce because I see the ads all the time.

Seshamani: Well, the process of selection really was laid out in the drug law and also through the guidance that we put out that we had incorporated everybody’s comment for. So, what we did is we started with the, you know, over 7,500 drugs that are covered in the Part D Medicare prescription drug program. From there, we picked those drugs that had been on the market for seven years for a drug product or 11 years for a larger molecule or biologic product that did not have competition. And then from there, there are various exemptions and exclusions that, again, are laid out in the law: for example, drugs that have low Medicare spend, of less than $200 million; drugs that are plasma-derived products; certain orphan drugs. An orphan drug is a drug that is indicated for a rarer disease. So that, again, those specific criteria are laid out in the law and in our guidance. And then there were opportunities for manufacturers to apply, for example, for a small biotech exemption; if their drug was, you know, 80% of their, you know, Medicare Part D revenue, they could say, “Hey, I’m a small biotech.” Again, a lot of these criteria were laid out in the law. Or for a manufacturer of a biosimilar, which is kind of like a generic drug for one of these biologic drugs, they could say, “Hey, we have a biosimilar that’s going to be coming on the market, has a high likelihood of coming on the market, so you should delay negotiating” the brand, if you will, drug. So, again, all of these steps were laid out in the drug law, and those are the steps and criteria that we followed that came to that list of 10 drugs that we published.

Rovner: I did see the makers of one drug — and forgive me, I can’t remember which one it was — saying, “But our drug isn’t that expensive.” On the other hand, their drug is used by a lot of people on Medicare. So, it’s not just the list price of the drug, right? It’s how much it costs Medicare overall.

Seshamani: That’s right. The list is made up of those drugs that have the highest gross total cost to the program — so, price per unit times units of volume that is used.

Rovner: So, how does this negotiation process work? What happens now? Now we have this list of 10 drugs.

Seshamani: Yeah, a lot of this is also laid out in the law, and then we fleshed out further in our guidance. So, from the list of 10 drugs, on Oct. 1, manufacturers now have to decide if they want to participate in the negotiation program. It is a voluntary program. It is our hope that they will come to the table and want to negotiate, because I think we all have shared goals of improving access and affordability and really driving innovation for the cures and therapies that people need. So, Oct. 1, they sign agreements for the negotiation program if they decide to participate. And Oct. 2 is the deadline for gathering data. We put out what’s called an information collection request to say, this is the kind of data we’re thinking about collecting. We got lots of comments and incorporated that. So, that provides the framework for the data that we’re requesting both from the manufacturer of the selected drug, but also, there are aspects open to the public on, you know, how the drug benefits populations, for example. So that’s Oct. 2. Then we’re going to have patient-focused listening sessions, a session for each drug, for patients, their caregivers, you know, other advocates, to be able to share what they see as the benefits of the drugs that are selected. And, we will have meetings with each of the manufacturers. All of that information will come together in an initial offer that CMS will make Feb. 1, 2024, and that is a date that is stipulated in the law. The manufacturer then has about 30 days to evaluate that. If they like that offer, they can agree. If they want, they can make a counteroffer. From that counteroffer, CMS has the ability to agree or to say, “You know, we don’t agree, so let’s now have a series of negotiation meetings.” There can be up to three negotiation meetings that provides that back-and-forth, ultimately leading to an agreed-upon what’s called maximum fair price in the law. And those maximum fair prices are published by Sept. 1, 2024. Again, that Sept. 1 is stipulated in the law. And also as part of this process, CMS will publish a narrative about that negotiation process — you know, the data that was received, you know, the back-and-forth, and also we’ll publish ultimately the maximum fair prices that are agreed to.

Rovner: And does that maximum fair price just apply to Medicare?

Seshamani: The maximum fair price just applies to Medicare. The information will be available. I mean, we don’t have any authority. You know, the commercial sector, they do their own negotiations, and they will continue to do so. But part of this is an opportunity to really further the conversation about how drugs impact the lives of people. We have an opportunity now with some drugs that have been on the market for quite a while, right? Minimum of seven years or 11 years, to see how these drugs work in the real world, in people’s communities, so that we can incorporate that into what it is that we need and want for people to be healthy, to stay out of the hospital, to live meaningful lives. So it’s really an opportunity to further that conversation. And a lot of that data, a lot of those listening sessions, that will all go into our negotiation process and will be part of the narrative that we publish.

Rovner: And what happens if the drug company says either we don’t want to negotiate or we don’t like our final offer? If they say they don’t want to play, what happens?

Seshamani: Julie, I will say again, to start with, we are hopeful that the drug companies will come forward and will want to negotiate because, again, through many conversations that we have had, we do have shared goals of access and affordability and really driving innovation and procures and therapies that people need. And it is a choice for drug companies if they want to participate or not, as stipulated in the law. If a drug company decides not to sign, you know, the negotiation agreement, not to participate in negotiation, then we would refer them to the Department of Treasury for an excise tax. That excise tax is also described in the law. If a drug company has this excise tax applied, they can get out of paying the excise tax. If, No. 1, they decide to come to the table and negotiate, or No. 2, if they exit the Medicare and Medicaid market. So those are kind of their off-ramps, if you will, for that excise tax.

Rovner: So they don’t have to participate in the negotiation, but they also don’t have to participate in Medicare and Medicaid.

Seshamani: Correct.

Rovner: So I saw a lot of complaining last week with the first group of drugs that this is really only going to benefit the people on Medicare who take those drugs. But, in fact, if there really is a lot of money saved, the benefits could go well beyond this, right?

Seshamani: Yeah, I think two points. So, yes, this negotiation is for, you know, some of the highest-cost drugs to the Medicare program that don’t have competition. And the negotiated drug prices apply to the Medicare program. However, as we talked about, this really drives a conversation around drugs and really grounding this negotiation process in the clinical benefit that a drug provides. Considering things like if a drug is easier for someone to take and it’s easier for a caregiver, that can have tangible improvements to the health of the person they’re caring for, right? And I think we have that opportunity to really drive the conversation. And as we know in many aspects of health care, people look to Medicare to see what Medicare is doing. And also, the transparency around providing that narrative of the negotiation, publishing the maximum fair prices that are agreed to. That’s all data that anybody can use as they would like. And I think the second piece that’s important to remember is that negotiation is one very important piece of a very big change to Medicare prescription drug coverage. You know, alongside the $2,000 out-of-pocket tab that’s going to go into effect in 2025, the no-cost vaccines, $35 copay cap for insulin that have already gone into effect. So, really, it is part of a larger sea change in Medicare drug coverage that will help millions of people and their families. You know, I did a roundtable with seniors as we were rolling out the insulin copay cap. And one woman was telling me that she was providing money to her brother every month so that he could pay for his insulin on Medicare. So, really, I mean, this has tremendous impact not just for people on Medicare, but their families, their communities, and really furthers the conversation for the entire system.

Rovner: I was actually thinking of more nitty-gritty money, which is if you save money for Medicare, premiums will be lower for people who are getting drug coverage, and taxpayers will save money, too, right? I mean, this is not just for these people and their families.

Seshamani: Our priority is being able to reach agreement on a fair price for the people who rely on these medications for their lives and the American taxpayer in the Medicare program.

Rovner: I know you can’t comment on lawsuits, and there are many lawsuits already challenging this. But the drug companies, one of their major arguments is that if you limit what they can charge for their drugs, particularly in the United States, the last country where they can charge whatever they want for their drugs, they will not be able to afford to keep the pipeline going to discover more new, important drugs. This is an argument they’ve been making since, I told somebody earlier, since I covered this in the late 1980s. What is your response just to that argument?

Seshamani: Well, I think there were several articles, many articles were written about this on the day that the 10 selected drugs were published. They were published before the stock market opened. And there really was no impact on the stocks of the companies. There were many financial pieces written about this. So I think that is one indication of the fact that the pharmaceutical industry is strong, it is thriving, and it is designed to innovate. And what we’re hoping to do through this negotiation program is really reward the kinds of innovations that we all need, the cures and therapies that people need. Recently, the venture fund that backed Moderna invested in a new startup for small molecules. Bayer has recently invested a billion dollars in the U.S. So you see, the industry very much is thriving. That is what the stock market response also shows. And it’s also the way that we are approaching negotiation to make sure that we’re rewarding the kinds of innovations that people need.

Rovner: Well, Meena Seshamani, thank you so much. I hope we can come back to you as this negotiation process for the first time proceeds.

Seshamani: Absolutely. Thanks again, Julie.

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

Ollstein: Yeah, I picked a very sad story from The Washington Post about how people who have schizophrenia are a lot more vulnerable to extreme heat. And it’s rare to find one of these health care stories where you’re just astonished. You know, I had no idea about this. You know, it really walks through not only are people more vulnerable for mental health reasons, you know, it profiles this terrible story of a guy in Phoenix who wandered off into the desert and died because he was experiencing paranoid delusions. But also, just physically, people with schizophrenia have difficulty regulating their body temperature. A lot of medications people take make people more dehydrated, less able to cope. And just an astonishingly high percentage of people hospitalized and killed by extreme heat have these mental illnesses. Of course, they’re also more likely to have housing instability or be out on the street. So just a fascinating piece, and I hope it spurs cities to think of ways to address it. One other small thing I want to compliment is it just, technically, on this article online, they have a little widget where you can convert all of the temperatures cited in the lengthy story from Fahrenheit to Celsius. And I just really appreciated that for allowing, you know, no matter where you live, you sort of get what these high temperatures mean.

Rovner: Yeah, graphics can be really helpful sometimes. Rachel.

Cohrs: Yeah. So I chose a story in The Wall Street Journal and the headline is “How Novartis’s CEO Learned From His Mistakes and Got Help From an Unlikely Quarter,” by Jared S. Hopkins. And I think it was a really interesting and rare look inside one of these pharmaceutical companies. And Novartis hired a Wall Street analyst, Ronny Gal, to help advise them. And I think I had read his analysis before he crossed over to Novartis. So I think it was interesting to just hear how that has integrated into Novartis’ strategy and just how they’re changing their business. But I think as we’re, you know, having these conversations about drug pricing and how strategies are changing due to some of these policies, it is helpful to look at who these executives are listening to and what they’re prioritizing, whose voices in this decision-making process that really has impacts for so many people who are waiting for treatments. And I think there are tough choices that are made all the time. So I just thought it was very illuminating and helpful as we’re talking about how medicines get made in D.C.

Rovner: Yeah, maybe there will be a little more transparency to actually how the drug industry works. We will see. Joanne.

Kenen: With Julie’s permission, I have two that are both short and related. I wrote a piece for Politico Nightly called “How to Wage War on Conspiracy Theories,” and I liked it because it really linked political trends and disinformation and attempts to debunk, with very parallel things going on in the world of health care and efforts to the motivations and efforts to sow trust and what we do and do not know about how to debunk, which we’re not very good at yet. And then the classic example, of course, is the related AP story, which has a very long headline, so bear with me. It’s by Kevin McGill: “Court Revives Doctors’ Lawsuit Saying FDA Overstepped Its Authority With Anti-Ivermectin Campaign.” And, basically, it’s that the 5th Circuit, a conservative court that we’ve talked about before, is saying that the FDA is allowed to inform doctors, but it can’t advise doctors. And I’m not really sure what the difference is there, because if the FDA is informing doctors that ivermectin, we now know, does not work against covid, and it can in fact harm people, there’s ample data, that the FDA is not allowed to tell doctors not to use it. So the ivermectin campaign is a form of disinformation, or misinformation, whatever you want to call it, that at the very beginning, people had, you know, there were some test-tube experiments. We had nothing else. You can sort of see why people wanted … might have wanted to try it. But we have lots and lots and lots of good solid clinical research and human beings and, no, it does not cure covid. It does not improve covid. And it can be damaging. It’s for parasites, not viruses.

Rovner: It can cure worms. Well, I’m going to channel my inner Margot Sanger-Katz this week and choose a story from a medical journal, in this case the Journal of the American Medical Association. Its lead author is Sherry Glied, who’s dean of the NYU Robert F. Wagner Graduate School of Public Service and former assistant HHS [Department of Health and Human Services] secretary for planning and evaluation during the Obama administration — and I daresay one of the most respected health policy analysts anywhere. The piece is called “Health Systems and Social Services — A Bridge Too Far?” And it’s the first article I’ve seen that really does question whether what’s become dogma in health policy over the past decade that — tending to what are called social determinants of health, things like housing, education, and nutrition — can improve health as much as medical care can. Rather, argues Glied, quote, “There are fundamental mismatches between the priorities and capabilities of hospitals and health systems and the task of addressing social determinants of health,” and that, basically, medical providers should leave social services to those who are professional social service providers. That is obviously a gross oversimplification of the argument of the piece, however, but I found it really thought-provoking and really, for the first time, someone saying, maybe we shouldn’t be spending all of this health care money on social determinants of health. Maybe we should let social service money go to the social service determinants of health. Anyway, we will see if this is the start of a trend or just sort of one outlier voice. OK, that is our show for this week. 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 amazing engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me, or X me, or whatever. I’m still there @jrovner, also on Bluesky and Threads. Rachel?

Cohrs: I’m @rachelcohrs on X.

Rovner: Alice.

Ollstein: @AliceOllstein.

Rovner: Joanne.

Kenen: @JoanneKenen on Twitter, @joannekenen1 on Threads.

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

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