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.

Some justices suggested the Supreme Court had said its piece on abortion law when it overturned Roe v. Wade in 2022. This term, however, the court has agreed to review another abortion case. At issue is whether a federal law requiring emergency care in hospitals overrides Idaho’s near-total abortion ban. A decision is expected by summer.

Meanwhile, the Centers for Medicare & Medicaid finalized the first-ever minimum staffing requirements for nursing homes participating in the programs. But the industry argues that there are not enough workers to hire to meet the standards.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of the Johns Hopkins University’s nursing and public health schools and Politico Magazine, Tami Luhby of CNN, and Alice Miranda Ollstein of Politico.

Panelists

Joanne Kenen
Johns Hopkins University and Politico

@JoanneKenen

Read Joanne's articles.

Tami Luhby
CNN

@Luhby

Read Tami's stories.

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories.

Among the takeaways from this week’s episode:

• This week’s Supreme Court hearing on emergency abortion care in Idaho was the first challenge to a state’s abortion ban since the overturn of the constitutional right to an abortion. Unlike previous abortion cases, this one focused on the everyday impacts of bans on abortion care — cases in which pregnant patients experienced medical emergencies.
• Establishment medical groups and doctors themselves are getting more vocal and active as states set laws on abortion access. In a departure from earlier political moments, some major medical groups are campaigning on state ballot measures.
• Medicaid officials this week finalized new rules intended to more closely regulate managed-care plans that enroll Medicaid patients. The rules are intended to ensure, among other things, that patients have prompt access to needed primary care doctors and specialists.
• Also this week, the Federal Trade Commission voted to ban most “noncompete” clauses in employment contracts. Such language has become common in health care and prevents not just doctors but other health workers from changing jobs — often forcing those workers to move or commute to leave a position. Business interests are already suing to block the new rules, claiming they would be too expensive and risk the loss of proprietary information to competitors.
• The fallout from the cyberattack of Change Healthcare continues, as yet another group is demanding ransom from UnitedHealth Group, Change’s owner. UnitedHealth said in a statement this week that the records of “a substantial portion of America” may be involved in the breach.

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

Julie Rovner: NBC News’ “Women Are Less Likely To Die When Treated by Female Doctors, Study Suggests,” by Liz Szabo.  

Alice Miranda Ollstein: States Newsroom’s “Loss of Federal Protection in Idaho Spurs Pregnant Patients To Plan for Emergency Air Transport,” by Kelcie Moseley-Morris.  

Tami Luhby: The Associated Press’ “Mississippi Lawmakers Haggle Over Possible Medicaid Expansion as Their Legislative Session Nears End,” by Emily Wagster Pettus.  

Joanne Kenen: States Newsroom’s “Missouri Prison Agency To Pay $60K for Sunshine Law Violations Over Inmate Death Records,” by Rudi Keller.  

Also mentioned on this week’s podcast:

• American Economic Review’s “Is There Too Little Antitrust Enforcement in the U.S. Hospital Sector?” by Zarek Brot-Goldberg, Zack Cooper, Stuart Craig, and Lev Klarnet.
• KFF Health News’ “Medical Providers Still Grappling With UnitedHealth Cyberattack: ‘More Devastating Than Covid,” by Samantha Liss.

CLICK TO OPEN THE TRANSCRIPT

Transcript: Abortion — Again — At the Supreme Court

[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, April 25, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this, so here we go.

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

Alice Miranda Ollstein: Hello.

Rovner: Tami Luhby of CNN.

Tami Luhby: Hello.

Rovner: And Joanne Kenen of the Johns Hopkins University schools of public health and nursing and Politico Magazine.

Joanne Kenen: Hi, everybody.

Rovner: No interview this week, but wow, tons of news, so we are going to get right to it. We will start at the Supreme Court, which yesterday heard oral arguments in a case out of Idaho over whether the federal Emergency Medical Treatment and Active Labor Act, or EMTALA, trumps Idaho’s almost complete abortion ban. This is the second abortion case the high court has heard in as many months and the first to actively challenge a state’s abortion ban since the overturn of Roe v. Wade in 2022. Last month’s case, for those who have forgotten already, was about the FDA approval of the abortion pill mifepristone. Alice, you and I both listened to these arguments. Did you hear any hints on which way the court might be leaning here?

Ollstein: The usual caveat that you can’t always tell by the questions they ask. Sometimes they play devil’s advocate or it’s not indicative of how they will rule on the case, but it did seem that at least a couple of the court’s conservatives were interested in really taking a tough look at Idaho’s argument. Obviously, some of the other conservatives were very much in support of Idaho’s argument that its doctors should not be compelled to perform abortions for patients experiencing a medical emergency. It really struck me from the arguments how much it focused on what’s actually going on on the ground.

That was a huge departure from a lot of other Supreme Court arguments and a lot of Supreme Court arguments on abortion where it’s a lot of hypotheticals and getting into the legal weeds. This was just like they were reading these concrete, reported stories of what’s been happening in Idaho and other states because of these abortion bans. People turned away while they were actively miscarrying, people being flown across state lines to receive timely care. I think whether that will make a difference that the justices are sort of being confronted with the concrete ramifications of the Dobbs [v. Jackson Women’s Health Organization] decision or not remains to be seen.

Rovner: I thought one of the things that it looked like very much like last month’s argument is that the women justices were very much about real details and talking about medical conditions, about ectopic pregnancies and premature rupture of membranes and things that none of the men mentioned at all. The men were sort of very legalistic and the women, including Amy Coney Barrett, who voted to overturn Roe v. Wade, were very much all about, as you said, what’s going on on the ground and what this distinction means. I mean, where we are is that Idaho has an exception in its abortion ban, but only for the life of the woman. Whereas EMTALA says you have to stabilize someone in an emergency situation and it’s been interpreted by the federal government to say sometimes that stabilization means terminating a pregnancy, as in the case of premature rupture of membranes or an ectopic pregnancy or a case where the woman is going to hemorrhage and is actively hemorrhaging.

That question of where that line is, between what’s an immediate threat to life and what’s just a threat to health or a threat to life soon, was the crux of this case. And it really does feel uncomfortably like we have nine Supreme Court justices making, really, medical decisions.

Ollstein: Yeah, it struck me how Amy Coney Barrett seemed to get pretty frustrated with Idaho’s attorney at a couple points. Idaho’s attorney was saying kind of, “Nothing to see here. There’s no problem. Since we allow lifesaving abortions and that’s what is required under EMTALA, there’s no conflict.” So Amy Coney Barrett was like, “Well, why are you here then? Why are you before us?” The reason is that they’re trying to get this lower-court injunction lifted even though it’s not in effect right now. The other point she got kinda testy was when Idaho was saying that their law is clear, doctors know what to do, and Amy Coney Barrett asked, “Well, couldn’t a prosecutor come in later and disagree and said, “Oh, you performed an abortion you said was to save someone’s life, but I don’t think it was necessary to save her life and I’m going to charge you criminally?” And the Idaho attorney conceded that that could happen.

So I think her vote could potentially be in play, but I don’t know if it’s going to be enough to overcome the court’s conservatives who are very skeptical that EMTALA should compel states to do anything.

Rovner: So the medical community has been quite outspoken in this case. The American Medical Association, American College of Obstetricians and Gynecologists and the American College of Emergency Physicians have all filed briefs saying the Idaho ban could require them to violate professional ethics, wrote the immediate president of the AMA, Jack Resnick, in an op-ed. “It is reckless for Idaho to tell emergency physicians that they must ignore their moral and ethical standards and stand by while a septic patient begins to lose kidney function or when a hemorrhaging patient faces only a 30% chance of death.” But I feel like the medical profession has long since lost control of the abortion issue. I mean, is there any chance here that they might prevail? I have to say this week I’ve gotten so many emails from so many doctor groups saying, “Oh my goodness, look what’s happening. They’re going to put us in this impossible situation.” To which I want my response to be, “Where have you been for the last 20 years?”

Ollstein: I mean, I think it is notable that these establishment medical groups are becoming more vocal. I mean, some might say better late than never, and I think in some instances they are having an impact at the state level. They have pushed some state legislatures to add or expand exemptions to abortion bans. But a lot of times Republican lawmakers have rejected calls from state medical associations to do that, and so I think filing amicus briefs is a way to have your say, lobbying at the state level is a way to have your say. Some doctors are even running for office specifically on this issue. And also, medical groups are campaigning hard on these state abortion referendums. I reported on doctor groups door-knocking in Ohio, for instance, before that referendum won big.

I think it’s really interesting to see the medical community get a lot more vocal on something they’ve either tried to stay out of or been vocal on the other side on in the past, but we’ll have to see how much impact that actually has.

Rovner: Well, one thing this case highlights is how pregnant women who experience complications that can threaten their health or future fertility, but are not immediately life-threatening, can end up in really terrible circumstances, as we heard in a number of anecdotes at the oral arguments. The Associated Press “FOIA’d”[requested Freedom of Information Act] EMTALA pregnancy complaint records from several states with abortion bans and found some pretty horrific examples, including one woman who miscarried in the emergency room lobby restroom after she was turned away from the registration desk. Another who was turned away and ended up giving birth in a car on the way to another hospital. That baby died. These are not people who go to the emergency room in search of abortions. They’re women who are trying to maintain pregnancies. Is the concept that people ending up in the most horrific situations are often those who most want children, is that finally getting through here?

Ollstein: What struck me most about that reporting is that the documents they got were just from the first few months after Roe v. Wade was overturned, so we have no idea what’s happening now. It could be better, it could be much worse, it could be the same. I think that lack of transparency makes this really hard to report on accurately. And the fact that it took The AP a year to even get those few heavily redacted documents speaks to the challenge here. We want an accurate picture of how these bans are impacting the provision of health care around the country, and it’s really hard to get.

Rovner: I know the Biden administration has been kind of trying to keep this quiet. I mean, not out there sort of blaring what’s happening. They’ve been sort of leaving that to the politics side and this is obviously the policy side. Obviously on the politics side, the Biden administration is getting bolder about using abortion as a campaign issue. The president himself gave a speech in Florida where a six-week ban is set to take effect next week and pinned all the abortion restrictions directly on former President Trump, who he pointed out has taken credit for them. Biden actually said the word abortion twice in that speech. I was listening very closely and went back and counted. I think that’s a first. They’re definitely stepping up the pressure politically, right?

Ollstein: Yes. The Biden campaign is leaning very hard on this. Even in states where it’s debatable whether they have a chance, like Florida, I think that there’s an interest, especially after seeing all of these referendums and ballot measures win big. It’s really shown Democrats that this is a very popular issue to run on, that they shouldn’t be afraid of it, that they should lean into it. I think you are seeing attempts to do that. It’s not always the language that the abortion rights advocacy community wants to hear, but it’s definitely more than we’ve heard from the Biden administration in the past.

I think you’re also seeing an attempt to sort of take the air out of Trump’s “Let’s leave it to states. I am reasonable and moderate” sort-of pitch. By highlighting what’s happening on the ground in certain states, it’s an attempt to say, “OK, you want to leave it to states? Then you own all of this. You own every woman being turned away from a hospital while she’s miscarrying. You own every instance of a ban going into effect and people having to travel across state lines,” et cetera. But whether just blaming Trump and arguing that he would be worse is enough versus saying what Biden would actually do and continue to do, I think that’s what we’ve heard people want to hear more of. Although there has been some action from the Biden administration recently.

Rovner: That was just going to be my next question. The one policy change the Biden administration did do this week was finalized a rule expanding the health records protections under HIPAA to abortion information. Why was this important? It sounds pretty nerdy.

Ollstein: This has been in the works for more than a year. A lot of people have been wondering why it’s been taking so long and worried that if it took even longer, it would be easier to get rid of it if a new administration takes over. But essentially this is to make it harder for states to reach across state lines to try to obtain information and use it to prosecute for having an abortion. It’s an attempt to better protect that data and so we heard a lot of praise after the announcement came out from abortion rights groups and some medical groups, and I would anticipate some groups on the right would sue. I’ve seen some complaints saying this will prevent law enforcement from investigating actual crimes against people, and so I expect to see some legal challenges soon.

Kenen: There are all sorts of efforts to stop both travel for abortion. There are also laws on books already, there have been for a number of years, about helping a minor cross state lines for abortion. There’s the attempts to stop the shipment of abortion pills from a legal state into a state that has a ban. There’s all sorts of things where, whether the intent is to actually prosecute a woman or a pregnant person, versus collecting evidence for some kind of larger crackdown or prosecution, this is potentially a piece … patient records are potentially a piece of that. We’ve talked a few weeks ago, maybe a month or two ago by now, about some Texas communities that wanted to say, “If you drive on the road in our town on the way to an abortion, we’re going to arrest you.” How they figure out logistically and practically … What are you going to do? Stop everybody on the road and give them a pregnancy test?

I mean, I don’t know how you enforce that, but just that these ideas are out there and on the books through this privacy shield. We have privacy under HIPAA, all of us, so to interpret it this way, or reinforce it depending on your political point of view, undermine excessively, whatever, but this is sort of pivotal because there’s so many ways these records could be used in various kinds of legislative and prosecutorial ways.

Rovner: As you point out, it’s not theoretical. We’ve seen attorneys general — Indiana and Kansas — and some other states, actually, and Texas say that they want to go after these records, so it’s not …

Kenen: Right and we’ve seen cases of the child rape victim and the prosecutor, what happened with the doctor, and so it’s not theoretical. It’s not widespread right now, but it’s not theoretical. Whether the pregnancy was planned and wanted or it was unplanned and ended up being wanted, going through a pregnancy loss is not just medically difficult, depending on when in pregnancy it occurs and under what circumstances. It can be medically quite complicated and it’s emotionally devastating. So to just get pulled into these political legal fights when you’ve already been bleeding in the parking lot or whatever, or having lost a pregnancy, it’s like you forget these are human beings. These are people going through medical crises.

Rovner: Indeed. Well, abortion is far from the only big health news this week. On Monday, the Biden administration finalized more long-awaited rules regarding staffing in nursing homes that participate in Medicare or Medicaid. Tami, what’s in these rules and why is the concept that nursing homes should have nurses on duty so controversial?

Luhby: It is very controversial and it’s also very consequential. So on Monday, as you said, the Biden administration finalized the first-ever minimum staffing rules at nursing homes involved in Medicare and Medicaid, and they say it’s crucial for patient safety and quality of care. It requires that all nursing homes provide a total of at least 3.48 hours of nursing care per resident per day, including defined periods of care from registered nurses and from nurses’ aides. Plus, nursing homes must have a registered nurse on-site at all times, which is different than the rules now. Now, CMS [Centers for Medicare & Medicaid Services] is giving the nursing homes some time to staff up. The mandate will be phased in over three years with rural communities having up to five years and they’re also giving temporary exemptions for facilities in areas with workforce shortages that demonstrate a good faith effort to hire. When I spoke to [Department of Health and Human Services] Secretary [Xavier] Becerra about the nursing home industry’s vocal concerns that this could cause a lot of nursing homes to close or limit admissions, he said, “Well, a business model that is based on understaffing is not a very good business model and is dangerous for patients.”

So, it’s going to be a heavy lift for nursing homes. According to HHS, 75% of them will have to hire staff, including 12,000 registered nurses and 77,000 aides. And also, 22% of them will need to hire registered nurses to meet the around-the-clock mandate. The nursing home operators, not surprisingly, have strongly pushed back on this rule even back when it was first proposed in September, saying that they’re already having staffing problems amid a nationwide shortage of nurses. The American Health Care Association called the mandate an unreasonable standard that only threatens to shut down more nursing homes, displace hundreds of thousands of residents, and restrict seniors’ access to care.

Rovner: We should point out the American Health Care Association is the lobbying group for nursing homes.

Luhby: Yes. What’s interesting also, though, is that on the other side, you have advocacy groups that are saying that it doesn’t go far enough and they’re citing a 2001 CMS study that found that nursing home residents need at least 4.1 hours of daily care. To add to all of this, if it’s not complicated and controversial enough, Congress is getting involved and is also split over the rules. Some lawmakers, like Sens. Elizabeth Warren and Bob Casey, generally support it, but nearly a hundred House members from both parties wrote to HHS Secretary Becerra expressing their concern that the mandate could lead to nursing home closures. And there’s a bipartisan Senate bill and a House Republican bill that would prohibit HHS from finalizing the rule. So we have time before this goes into effect. It goes into effect in phases, and we’ll see if lawmakers move to block the mandate or if the courts do, but it’s going to be interesting to watch how this plays out.

Rovner: Joanne wanted to add something.

Kenen: Well, first of all, as we say frequently, there’s always lawsuits. We have a health care/lawsuit system, so it’s not over. But I think the other thing is I think families who put a loved one in a nursing home don’t understand how little nursing, let alone doctoring, goes on. The name is “nursing” home and people expect there to be a nurse there, meaning a registered nurse. I think people often think there’s a doctor there, where the doctors are not there very much. That’s one reason the lack of medical care on-site, not only could there be emergencies, but I mean even things that could be treated in place if there is a physician. I mean, it’s just dial 911 and put them in an ambulance and send them to the hospital. And we do have this problem with hospital readmission, which is not just a cost problem and a regulatory problem, it’s really bad for patients to … the continuity of care is good and lack of continuity and handoffs and change, sending people back-and-forth is not good for them.

Obviously, there are times there’s an emergency and you need to send someone to a hospital, but not always. If there was a doctor or nurse, there’s some things that you don’t have to call 911 for. Because you don’t know or don’t learn about nursing homes until you have a relative there or until you’re a reporter who has to write about them. You don’t realize that they’re very custodial and there’s not a lot of taken care of in terms of getting assistance in bathing and walking and things like that. There’s less medical care, including nursing care, than people realize until your loved one is there. I mean, when I covered them the first time, I was really shocked. I mean, it’s 20 years ago the first time I wrote about it, but my assumption of what was there and what is actually there was a big gap.

Rovner: Tami.

Luhby: One thing also, though is … I mean, yes, that is definitely true about the medical care, but we’re also talking about just the care, not only the nursing. But that’s why so many aides need to be hired because you also have situations in nursing homes where people aren’t getting help to go to the bathroom, aren’t getting showered regularly, aren’t being watched. Maybe they’re trying to go to the bathroom themselves and they’re falling because they have to go. I mean, unfortunately, I’ve had experience with nursing homes with my family and I’ve seen this. But also I think it’s been pretty well reported in a lot of publications and studies and such. But there are a lot of problems in nursing homes, in general, and staffing.

Rovner: Well, just to talk about how long this is going on, former Sen. David Pryor died this week. When he was a House member, he rather famously went undercover at a nursing home to try and spotlight. That was when we first started to hear about some of the conditions in nursing homes. He was instrumental in doing the work that got the original federal nursing home standards passed in 1987, which was the first time I covered this issue, and even then there was a big fight in 1987 about should there be a staffing mandate? It’s like, hello, if we’re going to improve care in nursing homes, maybe we should make sure there are enough people to provide care. Even then the nursing home industry was saying, “But we have a shortage. We can’t hire enough people to actually do this if you give us a staffing mandate.” So literally, this has gone back-and-forth since 1987. And, as Joanne points out, it’s still in all likelihood not over, but one could sort of think, gee, they’ve had two generations now to come up with enough people to work in these nursing homes. Maybe Becerra is right. Maybe there’s something wrong with the business model?

Luhby: I was going to say, we know the business model is also moving more towards private equity, which is not necessarily going to be as concerned with the staffing levels. We know that the staffing levels … I think there’ve been studies that show that staffing levels are generally lower in investor-owned nursing homes. So there’s that.

Kenen: There’ve been a lot of demographic changes. I mean, you live longer, but you don’t always live healthier. We have families that are spread out. Not everybody’s living in the same town anymore. I mean, they haven’t for a number of decades now, but your daughter-in-law is 3,000 miles away. She can’t come to your house every day. At the same time, we do have a push and it’s not brand-new, it’s a number of years now, to do more home- and community-based care, but there are shortages and waiting lists and problems there, too. So there are a lot of people who need institutional care. Whether they wanted to have that or not, that’s where they go because either there’s not enough community support or they don’t have the family to fill in the gaps or they’re too medically complicated or whatever. Given the demographic trends and the degree of chronic disease and disability, this is not going away. It’s like Julie said, it’s way overdue. We need to figure it out. There are workforce shortages to train more CRNAs [certified registered nurse anesthetists] like the trained aides. It’s not a five-, six-year program. I mean, this can be done and is done somewhere in community colleges. You can do this. You can improve at all levels. You need more nurse RNs, nurses or advanced practice nurses, but you also need more of everything else. People who go to work in these jobs, by and large, do want to provide quality, compassionate care, and it’s hard to do if there are not enough of you.

Rovner: But they’re also super hard jobs and super stressful and super physically demanding.

Kenen: Hoisting and …

Rovner: Yeah, yeah. And not well-paid.

Kenen: Keeping track of a lot of stuff.

Rovner: Well, in a related move, the Biden administration this week also finalized rules that will attempt to make the quality of Medicaid managed-care plans more transparent. Among other things, the rules establish national wait time limits for certain types of medical care and require states to conduct secret shopper surveys of insurance provider networks to make sure there are enough practitioners available to serve the patient population. The administration says these rules are needed because so many Medicaid patients are now in managed care and regulations just haven’t kept up. Will these be enough to actually protect these often very vulnerable populations? I mean, obviously these people are not quite as vulnerable as people in nursing homes, but they’re kind of the next level down.

Kenen: Well, I think that we’ve seen a history of waves of regulation. Then whatever the status quo becomes, it doesn’t stay the status quo. Whether, as Tami mentioned, there’s more private equity or there’s monopolization and consolidation or just new state regulation. I mean, it’s not static. Do we know how this move is going to play out? No. Do we assume that the bad actors who don’t want to comply will find new ways of doing things that in five years we’ll have another set of regulations that we’ll be talking about? I mean, unfortunately, that’s the way things work. Some regulatory approaches or legal approaches work and others just sort of morph. There’s a lot of history of innovative great actors and lousy bad actors.

Rovner: I say it’s been a big week for federal regulation because we also have breaking news from the Federal Trade Commission, of all places. On Tuesday, the commissioners voted to finalize rules banning most noncompete clauses in employment contracts. At an event here at KFF, the FTC chair, Lina Kahn, said a surprisingly large number of comments about that proposed rule came from health care workers. Here’s a snippet from that conversation.

Lina Khan: There were a whole bunch of comments that said, “I signed this, but it’s not like I was exercising real choice. It felt coercive.” We also heard a lot about the effect of these noncompetes and the way that, especially in rural areas, if you want to switch employers and there’s really only one other option locally, if a noncompete is barring you from taking a job with that other hospital, practically to change jobs you have to leave the state. Right? And just how destructive and devastating that is for people and their families, especially if they’re choosing between staying in a job where the employer realizes that this is a captive employee and they don’t really have to compete in offering them better opportunities, better wages, and having to instead think about uprooting their family. We also heard from doctors who did not uproot their families, but instead just commuted hours and hours a day driving. People saying, “For five years I didn’t really see my kids at all awake, ever, because I was always on the road because of this noncompete.” So just really vivid stories from people.

Rovner: So even though the vote was less than 48 hours ago, the U.S. Chamber of Commerce has already filed suit to block the rules as have some smaller business groups. Why do businesses think they need to prevent workers from changing jobs near where they live? I mean, you could see it for people who’ve invented something. You don’t want them to walk out the door with proprietary secrets, but baristas at Starbucks and even nurses are not walking out with trade secrets.

Kenen: Well, I mean, this is common in doctors’ employment contracts, nurses, it’s everything. I think it’s partly because there are provider shortages in some places and they want to keep the workforce they have instead of having them be lured across town to a competitor where they could be paid more and then you have to pay even more to hire the next one. So that’s part of it. It’s economic. A lot of it’s economic. I mean, there’s some fear of patients going with a certain beloved provider, a doctor goes somewhere else. But I think it’s basically they don’t want churn. They don’t want to have to keep paying more. Somebody gets a job offer across the street and they don’t want to take it. They like where they are, but they’re going to ask for more money. It’s largely economic in a market where there’s scarcity of some specialties and certainly nursing. I mean, there’s questions about are there are not enough nurses? Or are we just putting them in the wrong places? But speaking generally, there’s a nursing shortage and physicians, we don’t have enough primary care providers. We certainly don’t have enough geriatricians. We don’t have enough mental health providers. We don’t have enough of a lot of things. This helps the employer, in this case, the health system, usually.

Rovner: I have to say it was only in the last couple of years that I even became aware there were noncompetes in health care. I mean, I knew about them for weathercasters on local stations. It’s like if you leave, you have to go to another station in another city. I had absolutely no idea that they were so common, as you point out, for so many economic reasons. Obviously this has also already been challenged in court, so we’ll have to see how that plays out.

Also this week on the antitrust front, we have a paper from three health economists published in the American Economic Review who calculated that if the Federal Trade Commission had been more aggressive about flagging and potentially blocking hospital mergers just between 2010 and 2015, health care prices could have been 5% lower. Researchers blame the FTC’s limited budget, but you have to wonder if that budget is limited because business has so much clout in Washington and really doesn’t want eager regulators snooping into their potentially anticompetitive practices. I mean, the FTC has been around for 120-some years now. Occasionally it tries to do big things like with these noncompetes, but mostly it doesn’t do as much as obviously economists and people who study it think that it could do. I mean, we certainly have problems with lack of competition in health care.

Ollstein: I think we have an unusually aggressive FTC right now, so it’ll be really interesting to see what they can accomplish in whatever time this administration has remaining to it, which remains to be seen. I have seen some more aggressive action from the agency in the past on things like payday lending and some of these other sort of maybe more fringy sectors of the economy. So to take on health care, which is so central and such a behemoth and, like you said, there’s so much political power behind it, as Joanne said, guarantee of lawsuits and coverage from us forever basically.

Kenen: The other point that’s worth making, I don’t think any of us have said this, it doesn’t apply to nonprofit hospitals or health systems, and that’s a lot of … market-dominant health care systems that are nonprofits, nominally their tax status is nonprofit. It’s a very confusing term to normal people, but these bans on noncompetes do not apply to the nonprofit sector, which is a lot of health care.

Rovner: Yet still it’s set off quite a conflagration since they passed this on Tuesday. Well, finally this week, speaking of big health care business, we are still seeing ramifications from that Change Healthcare hack back in February. While UnitedHealth Group, which owns Change, says things are approaching normality, that’s not the case for providers who still can’t submit bills or collect payments except doing it on paper. Meanwhile, in what’s going to be some kind of movie or miniseries someday, a second group is now demanding ransom after publishing some of the stolen data. If you’ve been following this story along with us, you’ll remember that United reportedly already paid a ransom of $22 million, except that it appears that the group that got that money stiffed the group that actually has control of the pirated data.

Oh, and buried in UnitedHealthcare’s news “update” posted on its website, it says protected health information, “which could cover a substantial proportion of people of America,” is involved in the hack. Can this get any worse?

Kenen: Snakes? I don’t think any of us journalists can quite comprehend. I mean, we understand intellectually, but I don’t think we understand what it’s like to be the billing clerk at a major practice right now trying to figure out what’s where and how to get paid and what it means for patients and what’s next. I mean, this is a tremendous hack, but it’s not the last.

Rovner: Yeah, and the idea that I think — what did they say? — 1 out of every 3 health care transactions goes through Change, I certainly wasn’t aware of. I think most reporters who are covering this weren’t aware of. I think certainly none of the public was aware of, that there’s that much of the money-changing that goes on from one, as we now know, vulnerable organization is a little bit scary.

Luhby: It shows the power of UnitedHealth[care] in the market. I mean, it’s the largest insurer and people think of it, “OK, I have insurance through it,” but they don’t realize all of the other tentacles that are attached.

Kenen: It also shows that there’s hack after hack after hack after hack. This company knew that they were big and powerful and central, and many of us never heard of them or barely knew what they were. But they knew what they were and despite all the warnings of the need for better and higher protection, cybersecurity protections, these things are going on still. I don’t have the technical expertise to know, well, OK, everybody’s doing everything they’re supposed to do as a health system, but the hackers are just always a step ahead. Or whether they’re really not doing everything they’re supposed to do and weak links in their own chains. Is it the diabolical geniuses? Or is it people still not taking this seriously enough?

Rovner: I will add that in our discussion with FTC Chair Lina Kahn, she did talk about cybersecurity as something that the FTC is going to be looking at in deciding whether there is unfair competition going on. Also, she has promised to come on the podcast, so hopefully we will get her in the next several weeks.

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

Luhby: Well, my extra credit is an AP story by Emily Wagster Pettus titled “Mississippi Lawmakers Haggle Over Possible Medicaid Expansion as Their Legislative Session Nears End.” This story brings us up to date on the negotiations between the House and Senate in Mississippi over expanding Medicaid. Just a quick refresher for listeners: Mississippi is one of 10 states that hasn’t expanded Medicaid yet, and this is the first time, and it’s really very consequential that the Republican-led legislature has seriously considered doing so. The problem is the House and Senate versions are very, very different. The House bill is more like a traditional Medicaid expansion, providing coverage for those earning up to 138% of the poverty level, although it would also try to institute a work requirement, and about 200,000 people would gain coverage. But the Senate version would only extend coverage to those earning up to 100% of the poverty level, which the Senate Medicaid committee chair thought would add about 40,000 to the program, and it would also come with a very strict work requirement.

So on Tuesday, lawmakers met to try to hash out a compromise. They did so in public. It was a public meeting recorded, which was very unusual, and apparently there were people waiting hours to get in. It was standing room only. The House offered a plan that would cover people earning up to 100% of the poverty level under Medicaid, while those earning between 100% and 138% would receive subsidies to buy insurance through the ACA exchange. But the Senate did not offer a proposal nor immediately respond to the one in the House. There are more meetings scheduled. I think there was another one yesterday. It remains to be seen what will happen, but the clock is ticking. The state legislature only is in session until May 5, and it doesn’t give them much time.

Another wrinkle is that it’s important to note that Gov. Tate Reeves, a Republican, has repeatedly voiced his opposition to Medicaid expansion in recent months and is likely to veto any bill. So if lawmakers do eventually agree on a compromise, they may very well also have to vote on whether to override the veto by the governor. This happened in Kansas in 2017 where the legislature did pass Medicaid expansion, Republican governor vetoed it, and the legislature was not able to override the veto and it never got that far again.

Rovner: So yes, we will keep our eyes on Mississippi. Thank you for the update. Alice, why don’t you go next?

Ollstein: I have a piece from States Newsroom related to the Supreme Court arguments on Idaho’s abortion ban and its impact on pregnant patients. The piece [“Loss of Federal Protection in Idaho Spurs Pregnant Patients To Plan for Emergency Air Transport”] is about the increase in patients being airlifted out of the state on these Life Flight [Network] emergency transports and the situation and doctors’ hesitancy to provide abortion care, even when they feel it’s medically necessary, is leading to this increase in flying patients to Oregon and Washington and Utah and neighboring states. It’s getting to the point where some doctors are even recommending people who are pregnant or planning to be pregnant purchase memberships in these flight companies, which normally is only recommended for people who do extreme outdoor sports who may need to be rescued or who ride motorcycles. So the fact that just being pregnant is becoming a category in which you are recommended to have this kind of insurance is pretty wild.

Rovner: Yeah. Welcome to 2024. Joanne.

Kenen: This is a piece from the Missouri Independent, which is also part of the States Newsroom, by Rudi Keller, and the headline is “Missouri Prison Agency To Pay $60K for Sunshine Law Violations Over Inmate Death Records.” That doesn’t sound quite as dramatic as this story really is. It’s about a mother who’s been trying to find out how her son was left unprotected, and he died by suicide, hanged himself in solitary confinement, when he had a history of mental illness. He was serving time for robbery. He wasn’t a murderer. I mean, he was obviously in prison. He had done something wrong, very wrong. He had had a 13-year sentence. But he had a history of mental illness. He had a history of past suicide attempts. He had been taken off some of his drugs, and she has been trying to find out what happened. But it’s not just her. There are other cases. The number of deaths in Missouri prisons has actually gone up in the last few years, even though the prison population itself has gone down. The headline is sort of the tip of a rather sad iceberg.

Rovner: Prison health care, I think, is something that people are starting to look at more closely, but there’s a lot of stories there to be done. Well, my story this week is from my friend and former colleague Liz Szabo, and it’s called “Women Are Less Likely To Die When Treated by Female Doctors, Study Suggests.” Now, this was a study of women on Medicare who were hospitalized, so not everybody, and the difference was small, but statistically significant. Those women treated by women doctors were slightly less likely to die in the ensuing 30 days than those treated by male doctors. It’s not entirely clear why, but at least part of it is that women tend to take other women’s problems more seriously, and women patients may be more likely to open up to other women doctors.

It’s another data point in trying to close the gap between women and men and the gap between people of color and white people when it comes to health care. So more studies to come.

OK, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks as always to our technical guru, Francis Ying, and our editor, Emmarie Huetteman. As always, you can email us your comments or questions to whatthehealth, all one word, @kff.org. Or you can still find me at X, I’m @jrovner. Joanne, where do you hang these days?

Kenen: Occasionally on X @JoanneKenen, but not very much, and on threads @joannekenen1.

Rovner: Tami?

Luhby: Best place is cnn.com.

Rovner: There you go. Alice?

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

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

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— Nearly a half-million health workers who stand to benefit from California’s nation-leading $25 minimum wage law could be in for a rude awakening if hospitals and other health care providers follow through on potential cuts to hours and benefits.

A medical industry challenge to a new minimum wage ordinance in one Southern California city suggests layoffs and reductions in hours and benefits, including cuts to premium pay and vacation time, could be one result of a state law set to begin phasing in in June. However, some experts are skeptical of that possibility.

The California Hospital Association brought a partly successful legal challenge to Inglewood’s $25 minimum wage ordinance, which barred employers from taking those sorts of steps to offset their higher costs.

“Layoffs, reductions in premium pay rates, reductions in non-wage benefits, reductions in hours, and increased charges are consequences of an employer having less money to spend—which will necessarily be the case given the significant increase in spending on wages due to the minimum wage,” the association said in its lawsuit. Additional examples include reducing health coverage and charging for parking or work-related equipment.

Inglewood voters approved the ordinance in November 2022, nearly a year before California legislators enacted a $25 minimum wage for health workers. Those statewide higher wages are to be phased in starting in June under California’s first-in-the-nation law, but Gov. Gavin Newsom has since said they are too expensive as the state faces a deficit estimated between $38 billion and $73 billion. It’s unclear if lawmakers will agree to a delay or take other steps to reduce the cost.

U.S. District Judge Dale S. Fischer agreed with the hospital industry in a March 11 tentative ruling when he shot down the portion of Inglewood’s ordinance banning layoffs and clawbacks by employers, while allowing the rest of the ordinance to remain in effect. He gave the sides time to object to his preliminary decision, though none did.

The California Hospital Association represents more than 400 hospitals and was a key backer of the state’s carefully crafted compromise law, which notably contains none of the employee safeguards included in the Inglewood ordinance.

Spokesperson Jan Emerson-Shea said the association doesn’t know how providers will react once the state law takes effect. “We don’t have any insights,” she said.

“The challenge for any health care organization is figuring out how to pay for the higher wages,” said Joanne Spetz, director of the Philip R. Lee Institute for Health Policy Studies at the University of California-San Francisco. “Since labor costs are the largest part of any health care organization’s costs, it’s hard to figure out how to reduce spending without looking at labor costs.”

Providers can try to increase revenues by bargaining for higher reimbursements from commercial insurers, she said. Public hospitals, nursing homes, and community clinics get most of their money through Medi-Cal, the state’s Medicaid program.

Providers could reduce the services they offer, pare back charity care, and cut or delay capital investments, Spetz said. In the long term, she expects some combination of spending cuts and revenue increases.

Both the state law and local ordinance cover far more than doctors and nurses, with a definition of health worker that includes janitors, housekeepers, groundskeepers, security guards, food service workers, laundry workers, and clerical staff.

The most recent estimate by the Health Care Program at the University of California-Berkeley Labor Center is that as many as 426,000 health workers would make an average of $6,400 extra in the law’s first year, a 19% average pay bump mainly benefiting lower-income workers of color and women. State finance officials project that well over 500,000 workers will benefit.

Researchers didn’t include layoffs and other potential staffing and benefit reductions when they projected the state law’s costs and benefits, said Laurel Lucia, the program’s director. But she pointed to initial projections by hospitals, doctors, and business and taxpayer groups that the wage hike would cost $8 billion annually, thereby imperiling services and resulting in higher premiums and higher costs for state and local governments.

“It seems like a contradiction to say this law’s going to cost billions of dollars while at the same time saying it’s going to reduce workers’ total compensation,” said Lucia, who projects a far lower price tag.

She added that state finance officials had anticipated that Medi-Cal reimbursements would reflect the increased labor costs, while Medicare would eventually at least partially compensate for the higher labor costs.

Michael Reich, chair of the Center on Wage and Employment Dynamics at UC Berkeley’s Institute for Research on Labor and Employment, and affiliated economist Justin Wiltshire recently argued that California’s new $20 minimum wage law for fast-food workers won’t result in mass layoffs and price increases, as some have predicted.

Health care is much different than fast food, Reich acknowledged, but he argued for much the same positive result.

“A higher minimum wage will make it easier and cheaper for hospitals to recruit and retain these workers. The cost savings, and the productivity benefits of more experienced workers, could offset much of the labor cost increase,” Reich said.

The hospital association filed its lawsuit against Inglewood’s ordinance in July, while it was still opposing early versions of the statewide minimum wage legislation. Among many other provisions, the statewide law put on hold an initiative to cap hospital executives’ salaries in Los Angeles.

The hospital association’s legal challenge referenced in part layoffs and reduced working hours imposed by Centinela Hospital Medical Center after Inglewood’s ordinance took effect.

But Centinela said the reduction was entirely unrelated to the ordinance and that all staff were offered alternate positions, which many accepted.

“Centinela Hospital also has since added many more jobs in new clinical positions above minimum wage scale,” the hospital said in a statement.

Service Employees International Union-United Healthcare Workers West, the prime backer of both the local ordinance and the statewide law, sued the hospital in April 2023 alleging that it cut workers’ hours to offset the higher minimum wage. The case is still pending.

The union did not respond to repeated requests for comment.

In a court filing, however, the union and city of Inglewood said similar employer restrictions in previous minimum wage laws have survived.

The ordinance “merely sets the backdrop for collective bargaining negotiations,” and does not bar employers from locking out employees or hiring replacement workers during a strike. Employers can still lay off workers or reduce their hours, they said, so long as they don’t do so to fund the higher minimum wage.

But Fischer agreed with the hospital association that layoffs and reductions in employees’ total compensation packages are “obvious responses by an employer to rising compensation costs.”

Restricting employers’ options would violate federal labor relations rules, he said.

“The minimum wage an employer has to pay its employees will invariably affect the total amount of compensation it is able or willing to pay,” he wrote “This will then invariably affect the number of employees it can retain and the number of hours those employees will be scheduled to work.”

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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The Host

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

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

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

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

Panelists

Sarah Karlin-Smith
Pink Sheet

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Alice Miranda Ollstein
Politico

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Sandhya Raman
CQ Roll Call

@SandhyaWrites

Read Sandhya's stories.

Among the takeaways from this week’s episode:

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

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

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

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

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

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

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

Also mentioned on this week’s podcast:

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

click to open the transcript

Transcript: The State of the Union Is … Busy

KFF Health News’ ‘What the Health?’Episode Title: The State of the Union Is … BusyEpisode Number: 337Published: March 7, 2024

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, March 7, at 9 a.m. As always, news happens fast and things might have changed by the time you hear this, so here we go. We are joined today via video conference by Alice Miranda Ollstein, of Politico.

Alice Miranda Ollstein: Hello.

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

Sarah Karlin-Smith: Hi, everybody.

Rovner: And Sandhya Raman, of CQ Roll Call.

Raman: Good morning.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rovner: I have that on a T-shirt.

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

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

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

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

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

Tanden: There’s few people who know the health care system as well as Julie Rovner, so it’s just a pleasure to be with you.

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

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

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

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

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

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

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

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

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

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

Rovner: Alice.

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

Rovner: Sandhya.

Raman: @SandhyaWrites on X and on Blue Sky.

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

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

The Alabama Supreme Court’s groundbreaking ruling last week that frozen embryos have legal rights as people has touched off a national debate about the potential fallout of the “personhood” movement. Already the University of Alabama-Birmingham has paused its in vitro fertilization program while it determines the ongoing legality of a process that has become increasingly common for those wishing to start a family. 

Meanwhile, former President Donald Trump is reportedly leaning toward endorsing a national, 16-week abortion ban. At the same time, former aides are planning a long agenda of reproductive health restrictions should Trump win a second term.

This week’s panelists are Julie Rovner of KFF Health News, Lauren Weber of The Washington Post, Rachana Pradhan of KFF Health News, and Victoria Knight of Axios.

Panelists

Victoria Knight
Axios

@victoriaregisk

Read Victoria's stories.

Rachana Pradhan
KFF Health News

@rachanadpradhan

Read Rachana's stories.

Lauren Weber
The Washington Post

@LaurenWeberHP

Read Lauren's stories.

Among the takeaways from this week’s episode:

• The Alabama Supreme Court’s decision on embryonic personhood could have wide-ranging implications beyond reproductive health care, with potential implications for tax deductions, child support payments, criminal law, and much more.
• Donald Trump is considering a national abortion ban at 16 weeks of gestation, according to recent reports. It is unclear whether such a ban would go far enough to please his conservative supporters, but it would be far enough to give Democrats ammunition to campaign on it. And some are looking into using a 19th-century anti-smut law, the Comstock Act, to implement a national ban under a new Trump presidency — no action from Congress necessary.
• New reporting from KFF Health News draws on many interviews with clinicians at Catholic hospitals about how the Roman Catholic Church’s directives dictate the care they may offer patients, especially in reproductive health. It also draws attention to the vast number of religiously affiliated hospitals and the fact that, for many women, a Catholic hospital may be their only option.
• Questions about President Joe Biden’s cognitive health are drawing attention to ageism in politics — as well as in American life, with fewer people taking precautions against the covid-19 virus even as it remains a serious threat to vulnerable people, especially the elderly. The mental fitness of the nation’s leaders is a valid, relevant question for many voters, though the questions are also fueled by frustration with a political system in which many offices are held by older people who have been around a long time.

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

Julie Rovner: Stat’s “New CMS Rules Will Throttle Access Researchers Need to Medicare, Medicaid Data,” by Rachel M. Werner.

Lauren Weber: The Washington Post’s “They Take Kratom to Ease Pain or Anxiety. Sometimes, Death Follows,” by David Ovalle.

Rachana Pradhan: Politico’s “Red States Hopeful for a 2nd Trump Term Prepare to Curtail Medicaid,” by Megan Messerly.

Victoria Knight: ProPublica’s “The Year After a Denied Abortion,” by Stacy Kranitz and Kavitha Surana.

Also mentioned on this week’s podcast:

• The New York Times’ “Trump Privately Expresses Support for a 16-Week Abortion Ban,” by Maggie Haberman, Jonathan Swan, and Lisa Lerer.
• The New York Times’ “Trump Allies Plan New Sweeping Abortion Restrictions,” by Lisa Lerer and Elizabeth Dias.
• Politico’s “Trump Allies Prepare to Infuse ‘Christian Nationalism’ in Second Administration,” by Alexander Ward and Heidi Przybyla.
• KFF Health News’ “The Powerful Constraints on Medical Care in Catholic Hospitals Across America,” by Rachana Pradhan and Hannah Recht.
• The Washington Post’s “Tax Records Reveal the Lucrative World of Covid Misinformation,” by Lauren Weber.
• KFF Health News’ “Do We Simply Not Care About Old People?” by Judith Graham.
• Stat’s “A Neuropsychologist Clarifies Science on Aging and Memory in Wake of Biden Special Counsel Report,” by Annalisa Merelli.

click to open the transcript

Transcript: Alabama Court Rules Embryos Are Children. What Now?

KFF Health News’ ‘What the Health?’Episode Title: Alabama Court Rules Embryos Are Children. What Now?Episode Number: 335Published: Feb. 22,2024

[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. 22, 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 Lauren Weber of The Washington Post.

Lauren Weber: Hello, hello.

Rovner: Victoria Knight of Axios.

Victoria Knight: Hello, everyone.

Rovner: And my KFF Health News colleague Rachana Pradhan.

Rachana Pradhan: Hi, there. Good to be back.

Rovner: Congress is out this week, but there is still tons of news, so we will get right to it. We’re going to start with abortion because there is lots of news there. The biggest is out of Alabama, where the state Supreme Court ruled last week that frozen embryos created for IVF [in vitro fertilization] are legally children and that those who destroy them can be held liable. In fact, the justices called the embryos “extrauterine children,” which, in covering this issue for 40 years, I never knew was a thing. There are lots of layers to this, but let’s start with the immediate, what it could mean to those seeking to get pregnant using IVF. We’ve already heard that the University of Alabama’s IVF clinic has ceased operations until they can figure out what this means.

Pradhan: I think that that is the immediate fallout right now. We’ve seen Alabama’s arguably flagship university saying that they are going to halt. And I believe some of the coverage that I saw, there was even a woman who was about to start a cycle or was literally about to have embryos implanted and had to encounter that extremely jarring development. Beyond the immediate, and of course, Julie, I’m sure we’ll talk about this, a bit about the personhood movement and fetal rights movement in general, but a lot of the country might say, “Oh, well, it’s Alabama. It’s only Alabama.” But as we know it, it really just takes one state, it seems like these days, to open the floodgates for things that might actually take hold much more broadly across the country. So that’s what I’m …

Rovner: It’s funny, the first big personhood push I covered was in 2011 in Mississippi, so next door to Alabama, very conservative state, where everybody assumed it was going to win. And one of the things that the opposition said is that this would ban most forms of birth control and IVF, and it got voted down in Mississippi. So here we are, what, 13 years later. But I mean, I think people don’t quite appreciate how IVF works is that doctors harvest as many eggs as they can and basically create embryos. Because for every embryo that results in a successful pregnancy, there are usually many that don’t.

And of course, couples who are trying to have babies using IVF tend to have more embryos than they might need, and, generally, those embryos are destroyed or donated to research, or, in some cases — I actually went back and looked this up — in the early 2000s there was a push, and it’s still there, there’s an adoption agency that will let you adopt out your unused embryos for someone else to carry to term. And apparently, all of this, I guess maybe not the adoption, but all the rest of this could theoretically become illegal under this Alabama Supreme Court ruling.

Pradhan: And one thing I just want to say, too, Julie, piggybacking on that point too is not just in each cycle that someone goes through with IVF — as you said, there are multiple embryos — but it often takes two people who want to start a family, it often takes multiple IVF cycles to have a successful pregnancy from that. It’s not like it’s a one-time shot, it usually takes a long time. And so you’re really talking about a lot of embryos, not just a one-and-done situation.

Rovner: And every cycle is really expensive. I know lots of people who have both successfully and unsuccessfully had babies using IVF and it’s traumatic. The drugs that are used to stimulate the extra eggs for the woman are basically rough, and it costs a lot of money, and it doesn’t always work. It seems odd to me that the pro-life movement has gotten to the point where they are stopping people who want to get pregnant and have children from getting pregnant and having children. But I guess that is the outflow of this. Lauren, you wanted to add something?

Weber: Yeah, I just wanted to chime in on that. I mean, I think we’re really going to see a lot of potential political ramifications from this. I mean, after this news came down, and just to put in context, the CDC [Centers for Disease Control and Prevention] reported in 2021 that there were 91,906 births via IVF. So that’s almost 92,000 families in 2021 alone. You have a political constituency of hundreds of thousands of parents across the U.S. that feel very strongly about this because they have received children that they paid a lot of money for and worked very hard to get. And it was interesting after this news came down — I will admit, I follow a lot of preppy Southern influencers who are very apolitical and if anything conservative, who all were very aggressively saying, “The only reason I could have my children is through this. We have to make a stand.”

I mean, these are not political people. These are people that are — you could even argue, veering into tradwife [traditional wife] territory in terms of social media. I think we’re really going to see some political ramifications from this that already are reflected in what Donald Trump has recently been reported as feeling about how abortion limits could cost him voters. I do wonder if IVF limits could really cause quite an uproar for conservative candidates. We’ll see.

Rovner: Yeah. Well, Nikki Haley’s already gotten caught up in this. She’s very pro-life. On the other hand, she had one of her children using IVF, which she’s been pretty frank about. She, of course, got asked about this yesterday and her eyes had the deer-in-the-headlights look, and she said, “Well, embryos are children,” and it’s like, “Well, then what about your extra embryos?” Which I guess nobody asked about. But yeah, I mean clearly you don’t have to be a liberal to use IVF to have babies, and I think you’re absolutely right. I want to expand this though, because the ruling was based on this 2018 constitutional amendment approved by voters in Alabama that made it state policy to, quote, “Recognize and support the sanctity of unborn life and the rights of unborn children.”

I should point out that this 2018 amendment did not directly try to create fetal personhood in the way that several states tried — and, as I mentioned, failed — in the 2010s, yet that’s how the Alabama Supreme Court interpreted it. Now, anti-abortion advocates in other states, Rachana, you mentioned this, are already trying to use this decision to apply to abortion bans and court cases there. What are the implications of declaring someone a person at the moment of fertilization? It obviously goes beyond just IVF, right?

Knight: Well, and I think you mentioned already, birth control is also the next step as well. Which basically they don’t want you to have a device that will stop a sperm from reaching an egg. And so I think that could have huge ramifications as well. So many young women across the U.S. use IUDs or other types of birth control. I know that’s one application that people are concerned about. I don’t know if there are others.

Rovner: Yeah, I’ve seen things like, if you’re pregnant, can you now drive in the HOV [high-occupancy vehicle] lane because you have another person?

Pradhan: I think that’s one of the more benign, maybe potential impacts of this. But I mean, if an embryo is a child, I mean it would affect everything from, I think, criminal laws affecting murder or any other … you could see there being criminal law impacts there. I think also, as far as child support, domestic laws, involving families, what would you — presumably maybe not everyone that I imagine who are turning to fertility treatments to start a family or to grow a family may not have a situation where there are two partners involved in that decision. I think it could affect everything, frankly. So much of our tax estate laws are impacted by whether people have children or not, and so …

Rovner: And whether those children have been born yet.

Pradhan: … tax deductions, can you claim an embryo as a dependent? I mean, it would affect everything. So I think they’re very wide, sweeping ramifications beyond the unfortunate consequences that some people might face, as Lauren said, which is that they’re just trying to start a family and now that’s being jeopardized.

Rovner: I think Georgia already has a law that you can take a tax deduction if you’re pregnant. I have been wondering, what happens to birthdays? Do they cease to mean anything? It completely turns on its head the way we think about people and humans, and I mean obviously they say, “Well, yeah, of course it is a separate being from the moment of fertilization, but that doesn’t make it a legal person.” And I think that’s what this debate is about. I did notice in Alabama — of course, what happened, what prompted this case was that some patient in a hospital got into the lab where the frozen embryos were kept and took some out and literally just dropped them on the floor and broke the vial that they were in. And the question is whether the families who belong to those embryos could sue for some kind of recourse, but it would not be considered murder because, under Alabama’s statutes, it has to be a child in utero.

And obviously frozen embryos are not yet in utero, they’re in a freezer somewhere. In that sense it might not be murder, but it could become — I mean, this is something that I think people have been thinking about and talking about obviously for many years, and you wonder if this is just the beginning of we’re going to see how far this can go, particularly in some of the more conservative states. Well, meanwhile, The New York Times reported last week that former President Trump, who’s literally been on just about every side of the abortion debate over the years, is leaning towards supporting a 16-week ban — in part, according to the story, because it’s a round number. Trump, of course, was a supporter of abortion rights until he started running for president as a Republican.

And, in winning the endorsement of skeptical anti-abortion groups in 2016, promised to appoint only anti-abortion judges and to reimpose government restrictions from previous Republican administrations. He did that and more, appointing the three Supreme Court justices who enabled the overturn of Roe v. Wade. But more recently, he’s seen the political backlash over that ruling and the number of states that have voted for abortion rights, including some fairly red states, and he’s been warning Republicans not to emphasize the issue. So why would he fail to follow his own advice now, particularly if it would animate voters in swing states? He keeps saying he’s not in the primaries anymore, that he’s basically running a general-election campaign.

Knight: I mean, I think to me, it seems like he’s clearly trying to thread the needle here. He knows some of the more social conservative of his supporters want him to do something about abortion. They want him to take a stand. And so he decided on allegedly 16 weeks, four months, which is less strict than some states. We saw Florida was 10 weeks. And then some other states …

Rovner: I think Florida is six weeks now.

Knight: Oh, sorry, six weeks. OK.

Rovner: Right. Pending a court decision.

Knight: Yeah. And then other states, in Tennessee, complete abortion ban with little room for exceptions. So 16 weeks is longer than some other states have enacted that are stricter. Roe v. Wade was about 24 weeks. So to me, it seems like he’s trying to find some middle ground to try to appease those social conservatives, but not be too strict.

Rovner: Although, I mean, one of the things that a 16-week ban would not do is protect all the women that we’ve been reading about who are with wanted pregnancies, who have things go wrong at 19 or 20 or 21 weeks, which are before viability but after 16 weeks. Well, unless they had — he does say he wants exceptions, and as we know, as we’ve talked about every week for the last six months, those exceptions, the devil is in the details and they have not been usable in a lot of states. But I’m interested in why Trump, after saying he didn’t want to wade into this, is now wading into this. Lauren, you wanted to add something?

Weber: Yeah, I wanted to echo your point because I think it’s important to note that 16 weeks is not based, it seems like, on any scientific reason. It sounds like to me, from what I understand from what’s out there, that 20 weeks is more when you can actually see if there’s heart abnormalities and other issues. So it sounds like from the reporting the Times did, was that he felt like 16 weeks was good as,  quote, “It was a round number.” So this isn’t exactly, these weak timing of bans, as I’m sure we’ve discussed with this podcast, are not necessarily tied towards scientific development of where the fetus is. So I think that’s an important thing to note.

Rovner: Yes. Rachana.

Pradhan: I mean, I think, and we’ve talked about this, but it’s the perennial danger in weighing in on any limit, and certainly a national limit, but any limit at all, is that 16 weeks, of course as the anti-abortion movement and I think many more people know now, the CDC data shows that the vast majority of abortions annually occur before that point in pregnancy. And so there are, of course, some anti-abortion groups that are trying to thread the needle and back a more middle-ground approach such as this one, 15 weeks, 16 weeks, banning it after that point. But for many, it’s certainly not anywhere good enough. And I think if you’re going to try to motivate your conservative base, I still have a lot of questions about whether they would find that acceptable. And I think it depends on how they message it, honestly.

If they say, “This is the best we can do right now and we’re trying,” that might win over some voters. But on the flip side, it’s still enough for Democrats to be able to run with it and say any national ban obviously is unacceptable to them, but it gives them enough ammunition, I think, to still say that former President Trump wants to take your rights away. And I think, as Lauren noted, genetic testing and things these days of course can happen and does happen before 16 weeks. So there might be some sense of whether there might be, your child has a lethal chromosomal disorder or something like that, that might make the pregnancy not viable. But the big scan that happens about midway through pregnancy is around 20 weeks, and that’s often when you, unfortunately, some people find out that there are things that would make it very difficult for their baby to survive so …

Rovner: Well, it seems that no matter what Trump does or says he will do if he’s elected in November, it’s clear that people close to him, including former officials, are gearing up for a second term that could go way further than even his very anti-abortion first term. According to Politico, a plan is underway for Trump to govern as a, quote, “Christian nationalist nation,” which could mean not just banning abortion, but, as Victoria pointed out, contraception, too, or many forms of contraception. A separate planning group being run out of the Heritage Foundation is also developing far-reaching plans about women’s reproductive health, including enforcement of the long-dormant 19th century Comstock Act, which we have talked about here many times before. But someone please remind us what the Comstock Act is and what it could mean.

Weber: I feel like you’re the expert on this. I feel like you should explain it.

Rovner: Oh boy. I don’t want to be the expert on the Comstock Act, but I guess I’ve become it. It’s actually my favorite tidbit about the Comstock Act is that it is not named after a congressman. It is named after basically an anti-smut crusader named Anthony Comstock in the late 1800s. And it bans the mailing of, I believe the phrase is “lewd or obscene” information, which in the late 1880s included ways to prevent pregnancy, but certainly also abortion. When the Supreme Court basically ruled that contraception was legal, which did not happen until the late 1960s — and early 1970s, actually —, the Comstock Act sort of ceased to be. And obviously then Roe v. Wade, it ceased to be.

But it is still in the books. It’s never been officially repealed, and there’s been a lot of chatter in anti-abortion movements about starting to enforce it again, which could certainly stop if nothing else, the distribution of the abortion pill in its tracks. And also it’s anything using the mail. So it could not just be the abortion pill, but anything that doctors use to perform abortions or to make surgical equipment — it seems that using Comstock, you could implement a national ban without ever having to worry about Congress doing anything. And that seems to be the goal here, is to do as much as they can without even having to involve Congress. Yes.

Pradhan: Julie, I’m waiting for the phrase “anti-smut crusader” to end up on a campaign sign or bumper sticker, honestly. I feel like we might see it. I don’t think this election has gotten nearly weird enough yet. So we still have nine months to go.

Rovner: Yeah. I’m learning way more about the Comstock Act than I really ever wanted to know. But meanwhile, Rachana, it does not take state or federal action to restrict access to reproductive health care. You have a story this week about the continuing expansion of Catholic hospitals and what that means for reproductive health care. Tell us what you found.

Pradhan: Well, yes, I would love to talk about our story. So myself and my colleague Hannah Recht, we started reporting the story, just for background, before the Supreme Court’s Dobbs decision, obviously anticipating that that is what was going to happen. And our story really digs into, based on ample interviews with clinicians, other academic experts, reading lots of documents about what the ethical and religious directives for Catholic health care services, which is what all, any health facility, a hospital, a physician’s office, anything that deems itself Catholic, has to abide by these directives for care, and they follow church teaching. Which we were talking about fertility treatments and IVF earlier actually, so in vitro fertilization is also something that the Catholic Church teaches is immoral. And so that’s actually something that they oppose, which many people may not know that.

But other things that the ERDs [ethical and religious directives] so to speak, impact are access to contraception, access to surgeries that would permanently prevent pregnancy. So for women that would be removing or cinching your fallopian tubes, but also, for men, vasectomies. And then, of course, anything that constitutes what they would call a direct abortion. And that affects everything from care for ectopic pregnancies, how you can treat them, to managing miscarriages. The lead story or anecdote in our story is about a nurse midwife who I spoke with, who used to work at a Catholic hospital in Maryland and talked to me about, relayed this anecdote about, a patient who was about 19 or 20 weeks pregnant and had her water break prematurely.

At that point, her fetus was not viable and that patient did not want to continue her pregnancy, but the medical staff there, what they would’ve done is induce labor with the intent of terminating the pregnancy. And they were unable to do that because of ERDs. And so, we really wanted to look at it systemically, too. So we looked at that combined with state laws that protect, shield hospitals from liability when they oppose providing things like abortions or even sterilization procedures on religious grounds. And included fresh new data analysis on how many women around the country live either nearby to a Catholic hospital or only have Catholic hospitals nearby. So we thought it was important.

Rovner: That’s a little bit of the lead because there’s been so much takeover of hospitals by Catholic entities over the last, really, decade and a half or so, that women who often had a choice of Catholic hospital or not Catholic hospital don’t anymore. That Catholic hospital may be the only hospital anywhere around.

Pradhan: Right and if people criticize the story, which we’ve gotten some criticism over it, one of the refrains we’ll hear is, “Well, just go to a different hospital.” Well, we don’t live in a country where you can just pick any hospital you want to go to — even when you have a choice, insurance will dictate what’s in-network versus what’s not. And honestly, people just don’t know. They don’t know that a hospital has a religious affiliation at all, let alone that that religious affiliation could impact the care that you would receive. And so there’s been research done over the years showing the percentage of hospital beds that are controlled by Catholic systems, et cetera, but Hannah and I both felt strongly that that’s a useful metric to a point, but beds is not relatable to a human being. So we really wanted to boil it down to people and how many people we’re talking about who do not have other options nearby. How many births occur in Catholic hospitals so that you know those people do not have access to certain care if they deliver at these hospitals, that they would have in other places.

Rovner: It’s a continuing story. We’ll obviously post the link to it. Well, I also want to talk about age this week. Specifically the somewhat advanced age of our likely presidential candidates this year. President [Joe] Biden, currently age 81, and former President Trump, age 77. One thing voters of both parties seem to agree on is that both are generically too old, although voters in neither party seem to have alternative candidates in mind. My KFF Health News colleague Judy Graham has a really interesting piece on increasing ageism in U.S. society that the seniors we used to admire and honor we now scorn and ignore. Is this just the continuing irritation at the self-centeredness of the baby boomers or is there something else going on here that old people have become dispensable and not worth listening to? I keep thinking the “OK, boomer” refrain. It keeps ringing in my ears.

Weber: I mean, I think there’s a mix of things going on here. I mean, her piece was really fascinating because it also touched upon the fact — which all of us here reported on; Rachana and I wrote a story about this back in 2021 — on how nursing homes really have been abandoned to some extent. I mean, folks are not getting the covid vaccine. People are dying of covid, they die of the flu, and it’s considered a way of life. And there is almost an irritation that there would be any expectation that it would be any differently because it’s a “Don’t infringe upon my rights” thought. And I do think her piece was fascinating because it asks, “Are we really looking at the elderly?”

I mean, I think that’s very different when we talk about politicians. I mean, the Biden bit is a bit different. I mean, I think there is some frustration in the American populace with the age of politicians. I think that reached a bit of a boiling point with the Sen. [Dianne] Feinstein issue, that I think is continuing to boil over in the current presidential election. But that said, we’re hurtling towards an election with these two folks. I mean, that’s where we’re at. So I think they’re a bit different, but I do think there is a national conversation about age that is happening to some degree, but is not happening in consideration to others.

Well, I was going to say, I think the other aspect is that these people are in the public all the time, or they’re supposed to be. President Biden is giving speeches. Potential candidate President Trump, GOP main candidate, he’s in the spotlight all the time, too. And so you can actually see when they mess up sometimes. You can see potentially what people are saying is signs of aging. And so I think it’s different when they’re literally in front of your eyes and they’re supposed to be making decisions about the direction of this country, potentially. So I think it’s somewhat a valid conversation to have when the country is in their hands.

Rovner: Yeah, and obviously the presidency ages you. [Barack] Obama went in as this young, strong-looking guy and came out with very gray hair, and he was young when he went in. Bill Clinton, too, was young when he was elected and came out looking considerably older. And so Biden, if people have pointed out, looks a lot older now than he did when he was running back in 2020. But meanwhile, despite what voters and some special councils think — including the one who said that Biden was what a kindly old man with a bad memory — neuroscientists say that it’s actually bunk that age alone can determine how mentally fit somebody is, and that even if memory does start to decline, judgment and wisdom may improve as you age. Why is nobody in either party making this point? I mean, the people supporting Biden are just saying that he’s doing a good job and he deserves to continue doing a good job. I mean, talk about the elephant in the room and nobody’s talking about it at all with Trump.

Pradhan: Yeah, I mean, I think probably the short answer is that it’s not really as politically expedient to talk about those things. I thought it was really interesting. Yeah, I really appreciated Stat News had this really interesting Q&A article. And then also there was this opinion piece in The New York Times that, this line struck me so much about, again, both about Biden’s age and his memory. And this line I thought was so fascinating because it just is telling how people’s perceptions can change so much depending on the discourse. So it pointed out that Joe Biden is the same age as Harrison Ford, Paul McCartney, Martin Scorsese. He’s younger than Berkshire Hathaway CEO Warren Buffett, who is considered to be one of the shrewdest and smartest investors, I think, and CEOs of modern times. And no one is saying, “Well, they’re too old to be doing their jobs” or anything. I’m not trying to suggest that people who have concerns about both candidates’ age[s] are not valid, but I think we sometimes have to double-check why we might be being led to think that way, and when it’s not really the same standards are not applied across the board to people who are even older than they are.

Rovner: I do think that some of the frustration, I think, Lauren, you mentioned this, is that in recent years, the vast majority of leadership positions in the U.S. government have been held by people who are, shall we say, visibly old. I mean Nancy Pelosi is still in Congress, but she at least figured out that she needed to step down from being speaker because I think the three top leaders in the House were all in their either late 70s or early 80s. The Senate has long been the land of very old people because you get elected to a six-year term. I mean, Chuck Grassley is 90 now, is he not? Feinstein wasn’t even, I don’t think, the oldest member of the Senate. So I think it’s glaring and staring us in the face. Rachana, you wanted to add something before we moved on.

Pradhan: Well, I think probably, and a lot of that too is just I think probably a reflection of voters’ broader gripes or concerns about the fact that we have people who hold office for an eternity, to not exaggerate it. And so people want to see new leadership, new energy, and when you have public officeholders who hold these jobs for … they’re career politicians, and I think that that is frustrating to a lot of people. They want to see a new generation, even regardless of political party, of ideas and energy. And then when you have these octogenarians holding onto their seats and run over and over and over again, I think that that’s frustrating. And people don’t get energized about those candidates, especially when they’re running for president. They just don’t. So it’s a reflection of just, I think, broader concerns.

Knight: And I think one more thing too was, I mean, Sen. Feinstein died while she was in office. I mean, people also may be referencing Ruth Bader Ginsburg on the Supreme Court, and it’s the question of, should you be holding onto a position that you may die in it, and not setting the way for the new person to take over and making that path available for the next people? Is that the best way to lead in whatever position you’re in? I think, again, Rachana said that’s frustrating for a lot of people.

Rovner: And I think what both parties have been guilty of, although I think Democrats even more than Republicans, is preparing people, making sure that that next generation is ready, that you don’t want to go from these people with age and wisdom and experience to somebody who knows nothing. You need those people coming up through the ranks. And I think there’s been a dearth of people coming up through the ranks lately, and I think that’s probably the big frustration.

Pradhan: I’m not sure if this is still true now, but I certainly remember, I think when Paul Ryan was speaker of the House, I remember the average age of the House Republican conference was significantly younger than that of Democrats. And they would highlight that. They would say, “Look, we are electing a new generation of leaders and look at these aging Democrats over here.” And that might still be true, but I certainly remember that that was something that they tried to capitalize on, oh-so-long ago.

Rovner: As we talked about last week, there are now a lot of those not-so-young Republicans, but not really old, who are just getting out because it is no fun anymore to be in Congress. Which is a good segue because … oh, go ahead.

Knight: Oh, I was just saying one thing Republicans do do in the House, at least they do have term limits on the chairmanships to ensure people do not hold onto those leadership positions forever. And Democrats do not have that. That’s at least in the House.

Rovner: But then you get the expertise walking out the door. It’s a double-edged sword.

Knight: Which is, not all the ones that are leaving have reached their term limits, which is the interesting thing actually. But yes, that expertise can walk out the door.

Rovner: Well, speaking of Congress, here in Washington, as I mentioned at the top, Congress is in recess, but when they come back, they will have I believe it is three days before the first raft of temporary spending bills expire. Victoria, is this the time that the government’s going to actually shut down, or are we looking at yet another round of short-term continuing resolutions? And at some point automatic cuts kick in, right?

Knight: Yeah, the eternal question that we’ve had all of this Congress, I think both sides do not want to shut down. I saw some reporting this morning that was saying [Senate Majority Leader] Chuck Schumer is talking to [House Speaker] Mike Johnson, but he also, Schumer did not want to commit to a CR [continuing resolution] yet either. So it’s possible, but we said that every time and they’ve pulled it off. I think they just know a shutdown is so, not even maybe necessarily politically toxic, but potentially —because I don’t know how much the public understands what that means …

Rovner: Because they don’t understand who’s at fault.

Knight: Right. Who’s at fault …

Rovner: … when it does shut down. They just know that the Social Security office is closed.

Knight: Right, but I just know they know it’s dysfunctional or it just can make things messy when that happens; it’s harder for agencies and things like that. So we’ll see. So the deadline is next Friday for the first set of bills. It’s just four bills then, and then the next deadline is March 8 for the other eight bills. There’s some talk that we may see a package over the weekend, but it’s Mike Johnson’s deciding moment. Again, he’s getting pressure from the House Freedom Caucus to push for either spending cuts or policy riders that include anti-abortion riders, anti-gender-affirming care, a lot. There’s a whole list of things that they sent yesterday they want in bills, and so he’s going to have to …

Rovner: Culture wars is the shorthand for a lot of those.

Knight: Yes, exactly. And so House Freedom Caucus sent a letter yesterday, and so Mike Johnson’s going to have to decide does he want to acquiesce to any House Freedom Caucus demands or does he want to work? But if he doesn’t want to do that, then he’s going to have to pass any funding bills with Democratic votes because he does not have enough votes with the Republicans alone, if Freedom Caucus people and people aligned in that direction don’t vote for any funding bills. If he does that, if he works with Democrats, then there is talk that they might file a motion to vacate him out of the speakership. So it’s the same problem that Kevin McCarthy had. The one thing going for Johnson is that he doesn’t have the baggage that Kevin McCarthy had, a lot of political baggage. A lot of people had ill will towards him, just built up over the years. Johnson doesn’t seem to have that as much, and also Republicans, do they want to be leadership-less again?

Rovner: Because that worked so well the first two times.

Knight: Right, so he has got to decide again who he wants to work with. And it doesn’t seem like we know yet how that’s going to go, and that will determine whether the government shuts down or not.

Rovner: But somebody also reminded me that on April 1, if they haven’t done full-year funding, that automatic cuts kick in. I had forgotten that. So I mean, they can’t just keep rolling these deadlines indefinitely. This presumably is the last time they can roll a deadline without having other ramifications.

Knight: Absolutely. And Freedom Caucus, actually, I think that’s partly why they don’t want to agree to something, because they want the 1% cuts across the board. So that was part of the deal made last year under Kevin McCarthy was, if they don’t come up with full funding bills by April 1, there will be a 1% cut put into place. And so the more hard-liners [are] like, “Great, we’re going to cut funding, so we want to do that.” And then Democrats don’t want that to happen. And so yeah, it’s the last time that they can potentially do a CR before that.

Rovner: Yeah, just a reminder, for those who are not keeping track, that April 1 is six months, halfway through the fiscal year for them to have not finished the fiscal year spending bills.

Knight: And one more note is that usually they’re starting on this coming year spending bills by this point in Congress. So we’re still working on FY24 bills. We should be working on FY25 bills already. So they’re already behind. It’s dysfunctional.

Rovner: I think it’s fair to say the congressional budget process has completely broken down. Well, moving on to “This Week in Medical Misinformation,” we have a case of doing well by doing no good. Lauren, tell us about your story looking into the profits that accrued to anti-vaccine and anti-science groups during the pandemic.

Weber: So I took a look at a bunch of tax records, and what I found is that four major nonprofits that rose to prominence during the covid pandemic by capitalizing on the spread of misinformation collectively gained more than $118 billion from 2020 to 2022. And were able to deploy that money to gain influence in statehouses, courtrooms, and communities across the country. And it’s a pretty staggering figure to tabulate all together. And what was particularly interesting is there was four of these different groups that I was directed to look at by experts in the field, and one of them includes Children’s Health Defense, which was founded by Robert F. Kennedy Jr., and they received, in 2022, $23.5 million in contributions, grants, and other revenue. That was eight times what they got before the pandemic. And that kind of story was reflected in these other groups as well. And it just shows that the fair amount of money that they were able to collect during this time as they were promoting content and other things.

Rovner: Yeah, I mean literally misinformation pays. While we’re on this subject, I would also note that this week there’s a huge multinational study of 99 million people vaccinated against covid that confirmed previous studies showing an association between being vaccinated and developing some rare complications. But a number of stories, at least I thought, overstated the risks of the study that it actually identified. Most failed to include the context that almost every vaccine has the possibility of causing adverse reactions in some very small number of people. The question of course, when you’re evaluating vaccines, is if the benefit outweighs the benefit of protecting against whatever this disease or condition outweighs the risk of these rare side effects.

I would also point out that this is why the U.S. actually has something called the [National] Vaccine Injury Compensation Program, which helps provide for people, particularly children, who experience rare complications to otherwise mandatory vaccines. Anyway, that is the end of my rant. I was just frustrated by the idea that yes, yes, we know vaccines sometimes have side effects. That’s the nature of vaccines. That’s one of the reasons we study them.

All right, anyway, that is the news for this week. 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. Victoria, why don’t you go first this week?

Knight: So my extra credit this week is a story in ProPublica called “The Year After a Denied Abortion.” It’s by [photographer] Stacy Kranitz and [reporter] Kavitha Surana. And it was a very moving photo essay and story about a woman who was denied an abortion in Tennessee literally weeks to a month after Roe v. Wade was overturned in June 2022, and this was in July 2022. She got pregnant and was denied an abortion. And so it followed her through the next year of her life after that happened. And in Tennessee, it’s one of the strictest abortion bans in the nation. Abortion is banned and there are very rare exceptions. And so this woman, Mayron Michelle Hollis, she already had some children that had been taken out of her care by the state, and so she was already fighting custody battles and then got pregnant. And Tennessee is also a state that doesn’t have a very robust safety-net system, so it follows her as she has a baby that’s born prematurely, has a lot of health issues, doesn’t have a lot of state programs to help her.

She was afraid to go through unemployment because she had had issues with that before. The paperwork situation’s really tough. There’s just so much stress involved also with the situation. She eventually ends up kind of relapsing, starting drinking too much alcohol, and she ends up in jail at the end of the story. And so it just talks about how if there is not a robust safety net in a state, if you’re kind of forced to have a pregnancy that you maybe are not able to take care of, it can be really tough financially and psychologically and tough for the mother and the child. So it was a really moving story and there were photos following her through that year.

Rovner: Lauren.

Weber: I wanted to shout out my colleague who I actually sit next to, David Ovalle, who is wonderful at The Washington Post. He wrote an article called “They Take Kratom to Ease Pain or Anxiety. Sometimes, Death Follows.” And, as our addiction reporter for the Post, he did a horribly depressing but wonderful job actually calculating how many kratom deaths or deaths associated with kratom have happened in recent years. And what he found through requests is that at least 4,100 deaths in 44 states and D.C. were linked to kratom between 2020 and 2022, which is public service journalism at its best. I mean, I think people are clear that there is more risks with this, but I think that it’s emerging actually how those risks are. And he catalogs through the hard numbers, which is often what it requires for folks to pay attention, that this is something that is interactive with other medications which is causing death, in some cases, on death certificates. So pretty moving story, he talked to a lot of the families of folks that have died and it really makes you wonder about the state of regulation around kratom.

Rovner: Yeah, and then, I mean, all food diet supplements that are basically unregulated by the FDA because Congress determined in the 1990s that they should be unregulated because the supplement industry lobbied them very heavily and we will talk about that at some other time. Rachana.

Pradhan: My extra credit is a story in Politico by Megan Messerly. It’s titled “Red States Hopeful for a 2nd Trump Term Prepare to Curtail Medicaid.” The short version is work requirements are in, again. There was an effort previously that Republicans wanted to impose employment as a condition of receiving Medicaid benefits, and then they were very quickly, a couple of states, were sued. Only one program really got off the ground, Arkansas. And what happened as a result is because of the paperwork burdens and other things, thousands of people lost coverage. So currently the Biden administration, of course, is not OK at all with tying any type of work, volunteer service, you name it, to Medicaid benefits. But I think Republicans would be — the story talks about how Republicans would be eager to go and pursue that policy push again and curtail enrollment as a result of that.

So I thought that was, it’s an interesting political story. One thing it did make me wonder though, just as an aside is, there’s also been discussion on the flip side, the states in the story, which focus on South Dakota and Louisiana, states that many of them have already expanded coverage to cover the ACA [Affordable Care Act] population, but there are also still states that have not expanded Medicaid under the ACA’s income thresholds. And those conservative states might find it slightly more palatable to do so if you allow them to impose these types of conditions on the program. And so I think we will see what happens.

Rovner: Although, as we talked about not too long ago, Georgia, one of the states that has not expanded Medicaid under the Affordable Care Act now has a work requirement for Medicaid. And they’ve gotten something in the neighborhood, I believe, of like 2,700 people who’ve signed up out of a potential 100,000 people who could be covered if they actually expanded Medicaid. So another space that we will watch.

Well, my extra credit this week is from Stat News and, warning, it’s super nerdy. It’s called “New CMS Rules Will Throttle Access Researchers Need to Medicare, Medicaid Data.” It’s by Rachel Werner, who’s a physician researcher at the University of Pennsylvania, and it’s about a change recently announced by the Centers for Medicare & Medicaid Services that will make it more difficult and more expensive for researchers to work with the program’s data, of which there is a lot. Since the new policy was announced earlier this month, according to CMS, in response to an increase in data breaches, I’ve heard from a lot of researchers who are worried that critical research won’t get done and that new researchers won’t get trained if these changes are implemented because only certain people will have access to the data because you’ll have to pay every time somebody else gets access to the data. Again, it’s an incredibly nerdy issue, but also really important. So the department is taking comment on this and we’ll see if they actually follow through.

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

Pradhan: Still on X, hanging on, @rachanadpradhan.

Rovner: Victoria.

Knight: I’m also on X @victoriaregisk.

Rovner: Lauren?

Weber: Still on X @LaurenWeberHP.

Rovner: I think people have come sort of slithering back. We will be back in your feed next week. Until then, be healthy.

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The ACA’s provision made medical and economic sense, encouraging Americans to use screening tools that could nip medical problems in the bud and keep patients healthy.

So when a bill for $236 arrived, Uddin — an occupational therapist familiar with the health care industry’s workings — complained to her insurer and the hospital. She even requested an independent review.

“I’m like, ‘Tell me why am I getting this bill?’” Uddin recalled in an interview. The unsatisfying explanation: The mammogram itself was covered, per the ACA’s rules, but the fee for the equipment and the facility was not.

That answer was particularly galling, she said, because, a year earlier, her “free” mammogram at the same health system had generated a bill of about $1,000 for the radiologist’s reading. Though she fought that charge (and won), this time she threw in the towel and wrote the $236 check. But then she dashed off a submission to the KFF Health News-NPR “Bill of the Month” project:

“I was really mad — it’s ridiculous,” she later recalled. “This is not how the law is supposed to work.”

The ACA’s designers might have assumed that they had spelled out with sufficient clarity that millions of Americans would no longer have to pay for certain types of preventive care, including mammograms, colonoscopies, and recommended vaccines, in addition to doctor visits to screen for disease. But the law’s authors didn’t reckon with America’s ever-creative medical billing juggernaut.

Over the past several years, the medical industry has eroded the ACA’s guarantees, finding ways to bill patients in gray zones of the law. Patients going in for preventive care, expecting that it will be fully covered by insurance, are being blindsided by bills, big and small.

The problem comes down to deciding exactly what components of a medical encounter are covered by the ACA guarantee. For example, when do conversations between doctor and patient during an annual visit for preventive services veer into the treatment sphere? What screenings are needed for a patient’s annual visit?

A healthy 30-year-old visiting a primary care provider might get a few basic blood tests, while a 50-year-old who is overweight would merit additional screening for Type 2 diabetes.

Making matters more confusing, the annual checkup itself is guaranteed to be “no cost” for women and people age 65 and older, but the guarantee doesn’t apply for men in the 18-64 age range — though many preventive services that require a medical visit (such as checks of blood pressure or cholesterol and screens for substance abuse) are covered.

No wonder what’s covered under the umbrella of prevention can look very different to medical providers (trying to be thorough) and billers (intent on squeezing more dollars out of every medical encounter) than it does to insurers (who profit from narrower definitions).

For patients, the gray zone has become a billing minefield. Here are a few more examples, gleaned from the Bill of the Month project in just the past six months:

Peter Opaskar, 46, of Texas, went to his primary care doctor last year for his preventive care visit — as he’d done before, at no cost. This time, his insurer paid $130.81 for the visit, but he also received a perplexing bill for $111.81. Opaskar learned that he had incurred the additional charge because when his doctor asked if he had any health concerns, he mentioned that he was having digestive problems but had already made an appointment with his gastroenterologist. So, the office explained, his visit was billed as both a preventive physical and a consultation. “Next year,” Opasker said in an interview, if he’s asked about health concerns, “I’ll say ‘no,’ even if I have a gunshot wound.”

Kevin Lin, a technology specialist in Virginia in his 30s, went to a new primary care provider to take advantage of the preventive care benefit when he got insurance; he had no physical complaints. He said he was assured at check-in that he wouldn’t be charged. His insurer paid $174 for the checkup, but he was billed an additional $132.29 for a “new patient visit.” He said he has made many calls to fight the bill, so far with no luck.

Finally, there’s Yoori Lee, 46, of Minnesota, herself a colorectal surgeon, who was shocked when her first screening colonoscopy yielded a bill for $450 for a biopsy of a polyp — a bill she knew was illegal. Federal regulations issued in 2022 to clarify the matter are very clear that biopsies during screening colonoscopies are included in the no-cost promise. “I mean, the whole point of screening is to find things,” she said, stating, perhaps, the obvious.

Though these patient bills defy common sense, room for creative exploitation has been provided by the complex regulatory language surrounding the ACA. Consider this from Ellen Montz, deputy administrator and director of the Center for Consumer Information and Insurance Oversight at the Centers for Medicare & Medicaid Services, in an emailed response to queries and an interview request on this subject: “If a preventive service is not billed separately or is not tracked as individual encounter data separately from an office visit and the primary purpose of the office visit is not the delivery of the preventive item or service, then the plan issuer may impose cost sharing for the office visit.”

So, if the doctor decides that a patient’s mention of stomach pain does not fall under the umbrella of preventive care, then that aspect of the visit can be billed separately, and the patient must pay?

And then there’s this, also from Montz: “Whether a facility fee is permitted to be charged to a consumer would depend on whether the facility usage is an integral part of performing the mammogram or an integral part of any other preventive service that is required to be covered without cost sharing under federal law.”

But wait, how can you do a mammogram or colonoscopy without a facility?

Unfortunately, there is no federal enforcement mechanism to catch individual billing abuses. And agencies’ remedies are weak — simply directing insurers to reprocess claims or notifying patients they can resubmit them.

In the absence of stronger enforcement or remedies, CMS could likely curtail these practices and give patients the tools to fight back by offering the sort of clarity the agency provided a few years ago regarding polyp biopsies — spelling out more clearly what comes under the rubric of preventive care, what can be billed, and what cannot.

The stories KFF Health News and NPR receive are likely just the tip of an iceberg. And while each bill might be relatively small compared with the stunning $10,000 hospital bills that have become all too familiar in the United States, the sorry consequences are manifold. Patients pay bills they do not owe, depriving them of cash they could use elsewhere. If they can’t pay, those bills might end up with debt-collection agencies and, ultimately, harm their credit score.

Perhaps most disturbing: These unexpected bills might discourage people from seeking preventive screenings that could be lifesaving, which is why the ACA deemed them “essential health benefits” that should be free.

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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Congress is back this week and feverishly working on a bipartisan agreement to fund the government for the rest of the 2024 fiscal year. Ahead of a potential vote, I spoke with Jesse Ehrenfeld, the president of the American Medical Association, the nation’s largest lobby group for doctors, about his organization’s priorities in Washington. 

Some background: Ehrenfeld is a Wisconsin anesthesiologist, researcher and medical school professor who also directs a health-care philanthropy in his state. He’s an Afghanistan combat veteran, the first openly gay president of the AMA and a national advocate for LGBTQ+ rights.

This transcript has been edited for clarity and brevity. You can hear the whole interview later today on “What the Health?”

Rovner: Congress is coming back and working on a budget, or so we hear. I know physicians are facing, again, a cut in Medicare pay, but that’s not the only AMA priority here in Washington at the moment, right? [Note: A 3.37 percent cut to Medicare physician payments took effect Jan. 1.]

Ehrenfeld: It’s unconscionable. And so we’re optimistic that we can get a fix, hopefully retroactive, as the omnibus consolidation work goes forward.

Physicians continue to struggle. My parents lost their own primary care physician because of a challenge with their primary care doctor not being able to take Medicare anymore. And what we’re seeing is more and more doctors just stopping seeing new Medicare patients, or opting out of the program entirely.

Rovner: Now we have the Supreme Court — none of whom have an M.D., as far as I know — about to decide whether doctors [treating] women with pregnancy emergencies should obey state abortion bans, the federal Emergency Medical Treatment and Active Labor Act, or their medical ethics, all of which may conflict. What’s the AMA doing to help doctors navigate these very choppy and changing legal waters?  

Ehrenfeld: Choppy is a good word for it. It’s confusing. And since the Dobbs decision, we have been working with all of our state and federation partners to try to help physicians navigate this. It’s unbelievable that now physicians are having to call their attorneys, the hospital legal counsel, to figure out what they can and can’t do. And, obviously, this is not a picture that supports women’s health. So we are optimistic that we might get a positive ruling with this EMTALA decision on the Supreme Court. But, obviously, there’s a long way that we need to go to make sure that we can maintain access for reproductive care.

Rovner: Do you think that’s something that has dawned on the rest of the members of the AMA that this is not necessarily about abortion, this is about the ability to practice medicine?  

Ehrenfeld: If you look at some of these socially charged restrictive laws, whether it’s in transgender health or abortion access, or other items, we take the same foundational approach, which is that physicians and patients ought to be making their health-care decisions without legislative interference. 

Rovner: It’s not just abortion and reproductive health where lawmakers are trying to dictate medical practice, but also care for transgender kids and adults and even treatment for covid and other infectious diseases. What are you doing to fight the sort of “pushing against” scientific discourse?  

Ehrenfeld: Our foundation in 1847 was to get rid of quackery and snake-oil salesmen in medicine. And yet here we are trying to do some of those same things with misinformation, disinformation. And obviously, even if you look at the attack on PrEP, preexposure prophylaxis for HIV prevention — making it basically zero out-of-pocket cost for many Americans — [not providing PrEP is] just unconscionable. We have treatments. We know that they work. We ought to make sure that patients and their physicians can have access to them.

Rovner: Artificial intelligence can portend huge advances and also other issues, not all of which are good. How is the AMA trying to push [medicine] more toward the former, the good things, and less toward the latter, the unintended consequences?  

Ehrenfeld: We need to make sure that we have appropriate regulation. The [Food and Drug Administration] doesn’t have the framework that they need.  We just need to make sure that those changes only let safe and effective algorithms, AI tools, AI-powered products come to the marketplace.

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His claims decrying vaccines have roiled scientists and medical experts and stoked anger over whether his work harms children. He has made suggestions about the cause of covid-19 that he acknowledges sound racist and antisemitic.

Bolstered by his famous name and family’s legacy, his campaign of conspiracy theories has gained an electoral and financial foothold. He is running as an independent — having abandoned his pursuit of the Democratic Party nomination — and raised more than $15 million. A political action committee pledged to spend between $10 million and $15 million to get his name on the ballot in 10 states.

Even though he spent the past two decades as a prominent leader of the anti-vaccine movement, Kennedy rejects a blanket “anti-vax” label that he told Fox News in July makes him “look crazy, like a conspiracy theorist.”

But Kennedy draws bogus conclusions from scientific work. He employs “circumstantial evidence” as if it is proof. In TV, podcast, and political appearances for his campaign in 2023, Kennedy steadfastly maintained:

• Vaccines cause autism.
• No childhood vaccines “have ever been tested in a safety study pre-licensing.”
• There is “tremendous circumstantial evidence” that psychiatric drugs cause mass shootings, and the National Institutes of Health refuses to research the link out of deference to pharmaceutical companies.
• Ivermectin and hydroxychloroquine were discredited as covid-19 treatments so covid vaccines could be granted emergency use authorization, a win for Big Pharma.
• Exposure to the pesticide atrazine contributes to gender dysphoria in children.
• Covid-19 is “targeted to attack Caucasians and Black people. The people who are most immune are Ashkenazi Jews and Chinese.”

For Kennedy, the conspiracies aren’t limited to public health. He claims “members of the CIA” were involved in the assassination of his uncle, John F. Kennedy. He doesn’t “believe that (Sirhan) Sirhan’s bullets ever hit my father,” former Attorney General Robert F. Kennedy. He insists the 2004 presidential election was stolen from Democratic candidate John Kerry.

News organizations, including PolitiFact, have documented why those claims, and many others, are false, speculative, or conspiracy-minded.

Kennedy has sat for numerous interviews and dismissed the critics, not with the grievance and bluster of former President Donald Trump, but with a calm demeanor. He amplifies the alleged plot and repeats dubious scientific evidence and historical detail.

Will his approach translate to votes? In polls since November of a three-way matchup between President Joe Biden, Trump, and Kennedy, Kennedy pulled 16% to 22% of respondents.

Kennedy’s movement exemplifies the resonance of conspiratorial views. Misinformers with organized efforts are rewarded with money and loyalty. But that doesn’t make the claims true.

Robert F. Kennedy Jr.’s campaign based on false theories is PolitiFact’s 2023 Lie of the Year.

How an Environmental Fighter Took Up Vaccines

Kennedy, the third of 11 children, was 9 when he was picked up on Nov. 22, 1963, from Sidwell Friends School in Washington, D.C., because Lee Harvey Oswald had shot and killed Uncle Jack. He was 14 when he learned that his father had been shot by Sirhan Sirhan following a victory speech after the California Democratic presidential primary.

RFK Jr., who turns 70 in January, wouldn’t begin to publicly doubt the government’s findings about the assassinations until later in his adulthood.

As a teenager, he used drugs. He was expelled from two boarding schools and arrested at 16 for marijuana possession. None of that slowed an elite path through higher education, including Harvard University for his bachelor’s degree and the University of Virginia for his law degree.

He was hired as an assistant district attorney in Manhattan in 1982 but failed the bar exam and resigned the next year. Two months later, he was arrested for heroin possession after falling ill on a flight. His guilty plea involved a drug treatment program, a year of probation, and volunteer work with a local anglers’ association that patrolled the Hudson River for evidence of pollution that could lead to lawsuits.

Kennedy’s involvement with Hudson Riverkeeper and the Natural Resources Defense Council ushered in a long chapter of environmental litigation and advocacy.

An outdoorsman and falconer, Kennedy sued companies and government agencies over pollution in the Hudson River and its watershed. (He joined the New York bar in 1985.) He earned a master’s degree in environmental law at Pace University, where he started a law clinic to primarily assist Riverkeeper’s legal work. He helped negotiate a 1997 agreement that protected upstate New York reservoirs supplying New York City’s drinking water.

In 1999, Kennedy founded the Waterkeeper Alliance, an international group of local river and bay-keeper organizations that act as their “community’s coast guard,” he told Vanity Fair in 2016. He stayed with the group until 2020, when he left “to devote himself, full-time, to other issues.”

On Joe Rogan’s podcast in June, Kennedy said that virtually all of his litigation involved “some scientific controversy. And so, I’m comfortable with reading science and I know how to read it critically.”

PolitiFact did not receive a response from Kennedy’s campaign for this story.

He became concerned about mercury pollution from coal-burning power plants; methylmercury can build up in fish, posing a risk to humans and wildlife. As he traveled around the country, he said, women started appearing in the front rows of his mercury lectures.

“They would say to me in kind of a respectful but vaguely scolding way, ‘If you’re really interested in mercury contamination exposure to children, you need to look at the vaccines,’” Kennedy told Rogan, whose show averages 11 million listeners an episode.

Kennedy said the women sounded “rational” as they explained a link between their children’s autism and vaccines. “They weren’t excitable,” he said. “And they had done their research, and I was like, ‘I should be listening to these people, even if they’re wrong.’”

He did more than listen. In June 2005, Rolling Stone and Salon co-published Kennedy’s article “Deadly Immunity.” Kennedy told an alarming story about a study that revealed a mercury-based additive once used in vaccines, thimerosal, “may have caused autism in thousands of kids.” Kennedy alleged that preeminent health agencies — the Centers for Disease Control and Prevention, the Food and Drug Administration, the World Health Organization — had colluded with vaccine manufacturers “to conceal the data.”

Kennedy’s premise was decried as inaccurate and missing context. He left out the ultimate conclusion of the 2003 study, by Thomas Verstraeten, which said “no consistent significant associations were found between [thimerosal-containing vaccines] and neurodevelopmental outcomes.”

Kennedy didn’t clearly state that, as a precaution, thimerosal was not being used in childhood vaccines when his article was published. He also misrepresented the comments of health agency leaders at a June 2000 meeting, pulling certain portions of a 286-page transcript that appeared to support Kennedy’s collusion narrative.

Scientists who have studied thimerosal have found no evidence that the additive, used to prevent germ growth, causes harm, according to a CDC FAQ about thimerosal. Unlike the mercury in some fish, the CDC says, thimerosal “doesn’t stay in the body, and is unlikely to make us sick.” Continued research has not established a link between thimerosal and autism.

By the end of July 2005, Kennedy’s Salon article had been appended with five correction notes. In 2011, Salon retracted the article. It disappeared from Rolling Stone.

Salon’s retraction was part of a broader conspiracy of caving “under pressure from the pharmaceutical industry,” Kennedy told Rogan. The then-Salon editor rejected this, saying they “caved to pressure from the incontrovertible truth and our journalistic consciences.”

Kennedy has not wavered in his belief: “Well, I do believe that autism does come from vaccines,” he told Fox News’ Jesse Watters in July.

David Remnick, editor of The New Yorker, interviewed Kennedy for a July story. Noting that Kennedy was focusing more on vaccine testing rather than outright opposition, Remnick asked him whether he was having second thoughts.

“I’ve read the science on autism and I can tell you, if you want to know,” Kennedy said. “David, you’ve got to answer this question: If it didn’t come from the vaccines, then where is it coming from?”

How Covid-19 Helped RFK Jr.’s Vaccine-Skeptical Crusade

In 2016, Kennedy launched the World Mercury Project to address mercury in fish, medicines, and vaccines. In 2018, he created Children’s Health Defense, a legal advocacy group that works “aggressively to eliminate harmful exposures,” its website says.

Since at least 2019, Children’s Health Defense has supported and filed lawsuits challenging vaccination requirements, mask mandates, and social media companies’ misinformation policies (including a related lawsuit against Facebook and The Poynter Institute, which owns PolitiFact).

From the beginning, the group has solicited stories about children “injured” by environmental toxins or vaccines. This year, it launched a national bus tour to collect testimonials. The organization also produces documentary-style films and books, including Kennedy’s “The Wuhan Cover-Up and the Terrifying Bioweapons Arms Race” and “The Real Anthony Fauci: Bill Gates, Big Pharma, and the Global War on Democracy and Public Health.”

In 2020, Children’s Health Defense and the anti-vaccine movement turned attention to the emerging public health crisis.

Kolina Koltai, a senior researcher at Bellingcat, an investigative journalism group, had seen anti-vaccine groups try to seize on Zika and Ebola outbreaks, with little success. But the covid-19 pandemic provided “the exact scenario” needed to create mass dissent: widespread fear and an information vacuum.

Children’s Health Defense published articles in March and April 2020 claiming the “viral terror” was an attempt to enact the “global immunization agenda” and a “dream come true” for dictators. The group echoed these points in ads and social media posts and grew its audience, including in Europe.

On X, then known as Twitter, Children’s Health Defense outperformed news outlets that met NewsGuard’s criteria for trustworthiness from the third quarter of 2020 to the fourth quarter of 2021, according to a report by the German Marshall Fund think tank, even as Children’s Health Defense published debunked information about covid-19 and vaccines.

In 2019, Children’s Health Defense reported it had $2.94 million in revenue, and paid Kennedy a $255,000 salary. Its revenue grew 440% through 2021, according to IRS filings, hitting $15.99 million. Kennedy’s salary increased to $497,013. (Its 2022 form 990 for tax disclosure is not yet public. Kennedy has been on leave from the organization since he entered the presidential race in April.)

On social media, the message had limits. Meta removed Kennedy’s personal Instagram account in February 2021 for spreading false claims about covid-19 and vaccines, the company said, but left his Facebook account active. A year and a half later, Meta banned Children’s Health Defense’s main Facebook and Instagram accounts for “repeatedly” violating its medical misinformation policies. Several state chapters still have accounts.

As the group’s face, Kennedy became a leader of a movement opposed to masks and stay-at-home orders, said David H. Gorski, managing editor of Science-Based Medicine and a professor of surgery and oncology at the Wayne State University School of Medicine.

“The pandemic produced a new generation of anti-vaxxers who had either not been prominent before or who were not really anti-vax before,” Gorski said. “But none of them had the same cultural cachet that comes with being a Kennedy that RFK Jr. has.”

Rallying a crowd before the Lincoln Memorial on Jan. 23, 2022, Kennedy protested covid-19 countermeasures alongside commentator Lara Logan and anti-vaccine activist Robert Malone. The crowd held signs reading “Nuremberg Trials 2.0” and “free choice, no masks, no tests, no vax.” When Kennedy took the stage, mention of his role with Children’s Health Defense prompted an exuberant cheer.

In his speech, Kennedy invoked the Holocaust to denounce the “turnkey totalitarianism” of a society that requires vaccinations to travel, uses digital currency and 5G, and is monitored by Microsoft Corp. co-founder Bill Gates’ satellites: “Even in Hitler’s Germany, you could cross the Alps into Switzerland. You could hide in an attic like Anne Frank did.”

Days later, facing criticism from his wife, the actor Cheryl Hines, Jewish advocacy groups, and Holocaust memorial organizations, Kennedy issued a rare apology for his comments.

Asked about his wife’s comment on Dec. 15 on CNN, he said his remarks were taken out of context but that he had to apologize because of his family.

Recycle. Repeat. Repeat.

When he’s asked about his views, Kennedy calmly searches his rhetorical laboratory for recycled talking points, selective research findings, the impression of voluminous valid studies, speculation, and inarguable authority from his experience. He refers to institutions, researchers, and reports, by name, in quick succession, shifting points before interviewers can note what was misleading or cherry-picked.

There is power in repetition. Take his persistent claim that vaccines are not safety-tested.

• In July, he told “Fox & Friends,” “Vaccines are the only medical product that is not safety-tested prior to licensure.”
• On Nov. 7 on PBS NewsHour, Kennedy said vaccines are “the only medical product or medical device that is allowed to get a license without engaging in safety tests.”
• On Dec. 15, he told CNN’s Kasie Hunt that no childhood vaccines have “ever been tested in a safety study pre-licensing.”

This is false. Vaccines, including the covid-19 vaccines, are tested for safety and effectiveness before they are licensed. Researchers gather initial safety data and information about side effects during phase 1 clinical trials on groups of 20 to 100 people. If no safety concerns are identified, subsequent phases rely on studies of larger numbers of volunteers to evaluate a vaccine’s effectiveness and monitor side effects.

Kennedy sometimes says that some vaccines weren’t tested against inactive injections or placebos. That has an element of truth: If using a placebo would disadvantage or potentially endanger a patient, researchers might test new vaccines against older versions with known side effects.

But vaccines are among “the most tested and vetted” pharmaceutical products given to children, said Patricia Stinchfield, a pediatric nurse practitioner and the president of the National Foundation for Infectious Diseases.

Kennedy encourages parents to research questions on their own, saying doctors and other experts are invariably compromised.

“They are taking as gospel what the CDC tells them,” Kennedy said on Bari Weiss’ “Honestly” podcast in June.

Public health agencies have been “serving the mercantile interests of the pharmaceutical companies, and you cannot believe anything that they say,” Kennedy said.

Experts fret that the Kennedy name carries weight.

“When he steps forward and he says the government’s lying to you, the FDA is lying to you, the CDC is lying to you, he has credence, because he’s seen as someone who is a product of the government,” said Paul Offit, a pediatrics professor in the Children’s Hospital of Philadelphia’s infectious diseases division and the director of the hospital’s Vaccine Education Center. “He’s like a whistleblower in that sense. He’s been behind the scenes, so he knows what it looks like, and he’s telling you that you’re being lied to.”

Kennedy name-drops studies that don’t support his commentary. When speaking with Rogan, Kennedy encouraged the podcaster’s staff to show a particular 2010 study that found that exposure to the herbicide atrazine caused some male frogs to develop female sex organs and become infertile.

Kennedy has repeatedly invoked that frog study to support his position that “we should all be looking at” atrazine and its impact on human beings. The researcher behind the study told PolitiFact in June that Kennedy’s atrazine claims were “speculation” given the vast differences between humans and amphibians. No scientific studies in humans link atrazine exposure to gender dysphoria.

In July, Kennedy floated the idea that covid-19 could have been “ethnically targeted” to “attack Caucasians and Black people. The people who are most immune are Ashkenazi Jews and Chinese.” The claim was ridiculously wrong, but Kennedy insisted that it was backed by a July 2020 study by Chinese researchers. That study didn’t find that Chinese people were less affected by the virus. It said one of the virus’s receptors seemed to be absent in the Amish and in Ashkenazi Jews and theorized that genetic factors might increase covid-19 severity.

Five months later, Kennedy invoked the study and insisted he was right: “I can understand why people were disturbed by those remarks. They certainly weren’t antisemitic. … I was talking about a true study, an NIH-funded study.”

“I wish I hadn’t said them, but, you know, what I said was true.”

Kennedy answered using scientific terms (“furin cleave,” “ACE2 receptor”), but he ignored explanations found in the study. He didn’t account for how the original virus has evolved since 2020, or how the study emphasized these potential mutations were rare and would have little to no public health impact.

Public health experts say that racial disparities in covid-19 infection and mortality — in the U.S., Black and Hispanic people often faced more severe covid-19 outcomes — resulted from social and economic inequities, not genetics.

Kennedy says “circumstantial evidence” is enough.

Antidepressants are linked to school shootings, he told listeners on a livestream hosted by Elon Musk. The government should have begun studying the issue years ago, he said, because “there’s tremendous circumstantial evidence that those, like SSRIs and benzos and other drugs, are doing this.”

Experts in psychiatry have told PolitiFact and other fact-checkers that there is no causal relationship between antidepressants and shootings. With 13% of the adult population using antidepressants, experts say that if the link were true they would expect higher rates of violence. Also, the available data on U.S. school shootings shows most shooters were not using psychiatric medicines, which have an anti-violence effect.

Conspiracy Theories, Consequences, and a Presidential Campaign

The anti-censorship candidate frames his first bid for public office as a response to “18 years” of being shunned for his views — partly by the government, but also by private companies.

“You’re protected so much from censorship if you’re running for president,” Kennedy told conservative Canadian podcaster and psychologist Jordan Peterson in June.

In June, Kennedy’s Instagram account was reinstated — with a verified badge noting he is a public figure. Meta’s rules on misinformation do not apply to active political candidates. (PolitiFact is a partner of Meta’s Third Party Fact-Checking Program, which seeks to reduce false content on the platform.)

In July, he was invited to testify before the Republican-led House Select Subcommittee on the Weaponization of the Federal Government. He repeated that he had “never been anti-vax,” and railed against the Biden White House for asking Twitter to remove his January 2021 tweet that said Baseball Hall of Famer Hank Aaron’s death was “part of a wave of suspicious deaths among elderly,” weeks after Aaron, 86, received a covid-19 vaccine. The medical examiner’s office said Aaron died from unrelated natural causes.

Throughout 2023, alternative media has embraced Kennedy. He has regularly appeared on podcasts such as Peterson’s, and has also participated in profiles by mainstream TV, online, and print sources.

“You’re like, ‘But you’re talking right now. I’m listening to you. I hear your words. You’re not being censored,’” said Whitney Phillips, an assistant professor in the School of Journalism and Communication at the University of Oregon who researches how news media covers conspiracy theories and their proponents. “But a person can believe they’re being censored because they’ve internalized that they’re going to be,” or they know making the claim will land with their audience.

Time will tell whether his message resonates with voters.

Kyle Kondik, managing editor of Sabato’s Crystal Ball at the University of Virginia Center for Politics, said Kennedy may be a “placeholder” for voters who are dissatisfied with Trump and Biden and will take a third option when offered by pollsters.

The only 2024 candidate whose favorability ratings are more positive than negative? It’s Kennedy, according to FiveThirtyEight. However, a much higher percentage of voters are unfamiliar with him than they are with Trump or Biden — about a quarter — and Kennedy’s favorability edge has decreased as his campaign has gone on.

Nevertheless, third-party candidates historically finish with a fraction of their polling, Kondik said, and voters will likely have more names and parties on their fall ballots, including philosopher Cornel West, physician Jill Stein, and a potential slate from the No Labels movement.

Kennedy was popular with conservative commentators before he became an independent, and he has avoided pointedly criticizing Trump, except on covid-19 lockdowns. When NBC News asked Kennedy in August what he thought of Trump’s 2020 election lies, Kennedy said he believed Trump lost, but that, in general, people who believe elections were stolen “should be listened to.” Kennedy is one of them. He still says that the 2004 presidential election was “stolen” from Kerry in favor of Republican George W. Bush, though it wasn’t.

American Values 2024 will spend up to $15 million to get Kennedy’s name on the ballot in 10 states including Arizona, California, Indiana, New York, and Texas. Those are five of the toughest states for ballot access, said Richard Winger, co-editor of Ballot Access News.

Four of Kennedy’s siblings called Kennedy’s decision to run as an independent “dangerous” and “perilous” to the nation. “Bobby might share the same name as our father, but he does not share the same values, vision or judgment,” the group wrote in a joint statement.

Kennedy brushes it off when asked, saying he has a large family and some members support him.

On her podcast, Weiss asked whether Kennedy worried his position on autism and vaccines would cloud his other positions and cost him votes. His answer ignored his history.

“Show me where I got it wrong,” he said, “and I’ll change.”

In a campaign constructed by lies, that might be the biggest one.

PolitiFact researcher Caryn Baird contributed to this report.​

PolitiFact’s source list can be found here.

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

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The Host

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

Even without covid dominating the headlines, 2023 was a busy year for health policy. The ever-rising cost of health care remained an issue plaguing patients and policymakers alike, while millions of Americans lost insurance coverage as states redetermined eligibility for their Medicaid programs in the wake of the public health emergency.

Meanwhile, women experiencing pregnancy complications continue to get caught up in the ongoing abortion debate, with both women and their doctors potentially facing prison time in some cases.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs of Stat, Sandhya Raman of CQ Roll Call, and Joanne Kenen of Johns Hopkins University and Politico Magazine.

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

Sandhya Raman
CQ Roll Call

@SandhyaWrites

Read Sandhya's stories

Among the takeaways from this week’s episode:

• As the next election year fast approaches, the Biden administration is touting how much it has accomplished in health care. Whether the voting public is paying attention is a different story. Affordable Care Act enrollment has reached record levels due in part to expanded financial help available to pay premiums, and the administration is also pointing to its enforcement efforts to rein in high drug prices.
• The federal government is adding staff to go after “corporate greed” in health care, targeting in particular the fast-growing role of private equity. The complicated, opaque, and evolving nature of corporate ownership in the nation’s health system makes legislation and regulation a challenge. But increased interest and oversight could lead to a better understanding of the problems of and, eventually, remedies for a profit-focused system of health care.
• Concluding a year that saw many low-income Americans lose insurance coverage as states reviewed eligibility for everyone in the Medicaid program, there’s no shortage of access issues left to tackle. The Biden administration is urging states to take action to help millions of children regain coverage that was stripped from them.
• Also, many patients are all too familiar with the challenges of obtaining insurance approval for care. There is support in Congress to scrutinize and rein in the use of algorithms to deny care to Medicare Advantage patients based on broad comparisons rather than individual patient circumstances.
• And in abortion news, some conservative states are trying to block efforts to put abortion on the ballot next year — a tactic some used in the past against Medicaid expansion.
• This week in health misinformation is an ad from Florida’s All Family Pharmacy touting the benefits of ivermectin for treating covid-19. (Rigorous scientific studies have found that the antibacterial drug does not work against covid and should not be used for that purpose.)

Also this week, Rovner interviews KFF Health News’ Jordan Rau about his joint KFF Health News-New York Times series “Dying Broke.”

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

Julie Rovner: Business Insider’s “‘I Feel Conned Into Keeping This Baby,’” by Bethany Dawson, Louise Ridley, and Sarah Posner.

Joanne Kenen: The Trace’s “Chicago Shooting Survivors, in Their Own Words,” by Justin Agrelo.

Rachel Cohrs: ProPublica’s “Doctors With Histories of Big Malpractice Settlements Work for Insurers, Deciding if They’ll Pay for Care,” by Patrick Rucker, The Capitol Forum; and David Armstrong and Doris Burke, ProPublica.

Sandhya Raman: Roll Call’s “Mississippi Community Workers Battle Maternal Mortality Crisis,” by Lauren Clason.

Also mentioned in this week’s episode:

• Stat News’ “Humana Used Algorithm in ‘Fraudulent Scheme’ to Deny Care to Medicare Advantage Patients, Lawsuit Alleges,” by Casey Ross and Bob Herman.
• USA Today’s “Cigna Denied a Lung Transplant for a Cancer Patient. Insurer Now Says That Was an Eerror.’ By Ken Alltucker.
• Politico’s “Conservatives Move to Keep Abortion off the 2024 Ballot,” by Alice Miranda Ollstein and Megan Messerly.
• The New York Times’ “Why Democracy Hasn’t Settled the Abortion Question,” by Kate Zernike.

click to open the transcript

Transcript: 2023 Is a Wrap

KFF Health News’ ‘What the Health?’Episode Title: 2023 Is a WrapEpisode Number: 327Published: Dec. 21, 2023

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Dec. 21, at 10 a.m. As always, news happens fast and things might’ve changed by the time you hear this, so here we go.

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

Joanne Kenen: Hi, everybody.

Rovner: Sandhya Raman of CQ Roll Call.

Sandhya Raman: Good morning.

Rovner: And Rachel Cohrs of Stat News.

Rachel Cohrs: Hi.

Rovner: Later in this episode, we’ll have my interview with KFF Health News’ Jordan Rau, co-author of a super scary series done with The New York Times about long-term care. It’s called “Dying Broke.” But first, this week’s news. I thought we would try something a little bit different this week. It just happened that most of this week’s news also illustrates themes that we’ve been following throughout the year. So we get a this-week update plus a little review of the last 12 months, since this is our last podcast of the year. I want to start with the theme of, “The Biden administration has gotten a ton of things done in health, but nobody seems to have noticed.”

We learned this week that, with a month still to go, Affordable Care Act plan sign-ups are already at historic highs, topping 15 million, thanks, at least in part, to extra premium subsidies that the administration helped get past this Congress and which Congress may or may not extend next year. The administration has also managed to score some wins in the battle against high drug prices, which is something that has eluded even previous Democratic administrations. Its latest effort is the unveiling of 48 prescription drugs officially on the naughty list — that’s my phrase, not theirs — for having raised their prices by more than inflation during the last quarter of this year, and whose manufacturers may now have to pay rebates. This is something in addition to the negotiations for the high-priced drugs, right, Rachel?

Cohrs: Yeah, this was just a routine announcement about the drugs that are expected to be charged rebates and drugmakers don’t have to pay immediately; I think they’re kind of pushing that a little further down the road, as to when they’ll actually invoice those rebates. But the announcement raised a question in my mind of — certainly they want to tout that they’re enforcing the law; that’s been a big theme of this year — but it brought up a question for me as to whether the law is working to deter price hikes if these companies are all doing it anyway, so just a thought.

Rovner: It is the first year.

Cohrs: It is. This started going into effect at the end of last year, so it’s been a little over a year, but this is assessed quarterly, so the list has grown as time has gone on. But just a thought. Certainly there’s time for things to play out differently, but that’s at least what we’ve seen so far.

Rovner: They could say, which they did this week, it’s like, Look, these are drugs because they raised the prices, they’re going to have to give back some of that money. At least in theory, they’re going to have to give back some of that money.

Cohrs: In Medicare.

Rovner: Right. In Medicare. Some of this is still in court though, right?

Cohrs: Yes. So I think at any moment, I think this has been a theme of this year and will be carrying into next year, that there are several lawsuits filed by drugmakers, by trade associations, that just have not been resolved yet, and I think some of the cases are close to being fully briefed. So we may see kind of initial court rulings as to whether the law as a whole is constitutional. It is worth noting that most of those lawsuits are solely challenging the negotiation piece of the law and not the inflation rebates, but this could fall apart at any moment. There could be a stay, and I expect that the first court ruling is not going to be the last. There’s going to be a long appeals process. Who knows how long it’s going to take, how high it will go, but I think there is just a lot of uncertainty around the law as a whole.

Rovner: So the administration gets to stand there and say, “We did something about drug prices,” and the drug companies get to stand there and say, “Not yet you didn’t.”

Cohrs: Exactly. Yes, and they can both be correct.

Rovner: That’s basically where we are.

Cohrs: Yes.

Rovner: That’s right. Well, meanwhile, in other news from this week and from this year, the Federal Trade Commission, the Department of Justice, and the Department of Health and Human Services are all adding staff to go after what Biden officials call “corporate greed” — that is their words — in health care. Apparently these new staffers are going to focus on private equity ownership of health care providers, something we have talked about a lot and so-called roll-ups, which we haven’t talked about as much. Somebody explain what a roll-up is please.

Kenen: Julie, why don’t you?

Rovner: OK. I guess I’m going to explain what a roll-up is. I finally learned what a roll-up is. When companies merge and they make a really big company, then the Federal Trade Commission gets to say, “Mmm, you may be too big, and that’s going to hurt trade.” What a roll-up is is when a big company goes and buys a bunch of little companies, so each one doesn’t make it too big, but together they become this enormous — either a hospital system or a nursing home system or something that, again, is not necessarily going to make free trade and price limits by trade happen. So this is something that we have been seeing all year. Can the government really do anything about this? This also feels like sort of a lot of, in theory, they can do these things and in practice it’s really hard.

Cohrs: I feel like what we’ve seen in this space — I think my colleague Brittany wrote about kind of this move — is that the corporate structures around these entities are so complicated. Is it going to discourage companies from doing anything by hiring a couple people? Probably not. But I think the people power behind understanding how these structures work can lay the groundwork for future steps on understanding the landscape, understanding the tactics, and what we see, at least on the congressional side, is that a lot of times Congress is working 10 years behind some of the tactics that these companies are using to build market power and influence prices. So I think the more people power, the better, in terms of understanding what the most current tactics are, but it doesn’t seem like this will have significant immediate difference on these practices.

Kenen: I think that the gap between where the government is and where the industry is is so enormous. I think the role of PE [private equity] in health care has grown so fast in a relatively short period of time. Was there a presence before? Yes, but it’s just really taken off. So I think that if those who advocate for greater oversight, if they could just get some transparency, that would be their win, at the moment. They cannot go in and stop private equity. They would like to get to the point where they could curb abuse or set parameters or however you want to phrase it, and different people would phrase it in different ways, but right now they don’t even really know what’s going on. So, even among the Democrats, there was a fight this year about whether to include transparency language between [the House committees on] Energy and Commerce and Ways and Means, and I don’t think that was ever resolved.

I think that’s part of the “Let’s do it in January” mess. But I think they just sort of want not only greater insight for the government, but also for the public: What is going on here and what are its implications? People who criticize private equity — the defenders can always find some examples of companies that are doing good things. They exist. We all know who the two or three companies we hear all the time are, but I think it’s a really enormous black box, and not only is it a black box, but it’s a black box that’s both growing and shifting, and getting into areas that we didn’t anticipate a few years ago, like ophthalmology. We’ve seen some of these studies this year about specialties that we didn’t think of as PE targets. So it’s a big catch-up for roll-up.

Rovner: Yeah, and I think it’s also another place that the administration — and I think the Trump administration tried to do this too. Republicans don’t love some of these things either. The public complains about high health care costs. They’re right; we have ridiculously high health care costs in this country, much higher than in other countries, and this is one of the reasons why, is that there are companies going in who are looking to simply do it to make a profit and they can go in and buy these things up and raise prices. That’s a lot of what we’re seeing and a lot of why people are so frustrated. I think at very least it at least shows them: It’s like, “See, this is what’s happening, and this is one of the reasons why you’re paying so much.”

Kenen: It’s also changing how providers and practitioners work, and how much autonomy they have and who they work for. It’s in an era when we have workforce shortages in some sectors and burnout and dissatisfaction. There are pockets at least, and again, we don’t really know how big, because we don’t have our arms around this, but there are pockets; at least we do know where the PE ownership and how they dictate practice is worsening these issues of burnout and dissatisfaction. I’m having dinner tomorrow night with a expert on health care antitrust, so if we were doing this next week, I would be so much smarter.

Rovner: We will be sure to call on you in January. Workforce burnout: This is another theme that we’ve talked about a lot this year.

Kenen: It’s getting into places you just wouldn’t think. I was talking to a physical therapist the other day and her firm has been bought up, and it’s changing the way she practices and her ability to make decisions and how often she’s allowed to see a patient.

Rovner: Yeah. Well, another continuing theme. Well, yet another big issue this year has been the so-called Medicaid unwinding, as states redetermine eligibility for the first time since the pandemic began. All year, we’ve been hearing stories about people who are still eligible being dropped from the rolls, either mistakenly or because they failed to file paperwork they may never have received. Among the more common mistakes that states are making is cutting off children’s coverage because their parents are no longer eligible, even though children are eligible for coverage up to much higher family incomes than their parents. So even if the parents aren’t eligible anymore, the children most likely are.

This week, the federal government reached out to the nine states that have the highest rates of discontinuing children’s coverage, including some pretty big states, like Texas and Florida, urging them to use shortcuts that could get those children’s insurance back. But this has been a push-and-pull effort all year between the states and the federal government, with the feds trying not to push too hard. At one point, they wouldn’t even tell us which states they were sort of chiding for taking too many people off too fast. And it feels like some of the states don’t really want to have all these people on Medicaid and they would just as soon drop them even if they might be eligible. Is that kind of where we are?

Raman: You can kind of look to see the tea leaves at what some of these states are. The states that the health secretary wrote to, that have 60% of the decline in the kids being disenrolled, align pretty well with the states that have not expanded Medicaid. So they’re already going to have much fewer people enrolled than states where the eligibility levels are a lot more generous. So it’s not surprising, and some of these states have been just a little bit more aggressive from the get-go or said that they wanted to do the eligibility redeterminations a lot faster than some of the other states that wanted to take the longer time, reevaluate different ways to see if someone was still eligible, whether they were maybe getting SNAP [Supplemental Nutrition Assistance Program] benefits or other things like that. So it’s not surprising.

Rovner: You mean do it more carefully.

Raman: Yeah, yeah, so I think that the letter is one step, but if those states are really going to take up implementing these other strategies to kind of decrease that drop-off, unclear, just because they have been pretty proactive about doing this in a quick process.

Rovner: I also noticed that the states that the HHS secretary wrote to kind of tracked with the states that didn’t expand Medicaid under the Affordable Care Act, but interestingly, that meant that there would’ve been fewer parents who were eligible in the first place. So there shouldn’t have been as many children cut off, because there weren’t as many parents who ever got onto Medicaid in those states, which is why it made me raise my eyebrows a little bit. Again, I think this is something that we shall continue to follow going into next year.

Kenen: But we should also point out that even the more pro-Medicaid, liberal states have not done a great job with unwinding. It’s been bumpy pretty much across the board. It’s been very problematic. It’s a clumsy process in a normal year, and trying to catch up on three years’ worth — this is a population where people’s income varies a lot. Are you just over the line? Are you just under the line? It’s fluctuating, the eligibility changes. But you try to do three years at once after all the chaos, with political undercurrents such as the nonexpansion states, and it makes it harder and messier.

Rovner: Which was predicted and came true. So yet another theme from this year is what I’m calling the managed care backlash redux. In the late 1990s, when lots of people were herded into managed care for the first time, there were lots of horror stories about patients being denied care, doctors being put through bureaucratic hoops, unqualified people making medical decisions. There’s a bipartisan bill that almost came to fruition in 2001 for what was called a patient’s bill of rights, but it was pushed off the agenda by 9/11. Most of the protections in that bill, however, were eventually included in the Affordable Care Act.

So now it’s 2023, and lo and behold, those same issues are back. A top issue for the American Medical Association this year is reining in prior authorization requirements, which require doctors to actually get permission before their patients can get recommended care. In one particularly painful story recently, a woman who’d been approved for a lung transplant had her surgery canceled by her insurer, literally on the way to the OR [operating room]. Later, and not coincidentally after a public outcry, the insurer, Cigna, called the whole thing, quote, “An error.” So she did finally get her lung transplant. Joanne, you covered the patient’s bill of rights fight with me back in the day. Most things that are being complained about now are now illegal. So why are we seeing so much of it again?

Kenen: Because there’s confusion about — patients don’t know what their rights are. All of us are savvy and all of us have had something in our own insurance that we don’t understand, or maybe we end up navigating it, but it’s not ever easy. Things like prior authorization — they say, “Well, we have to make sure people are getting appropriate care.” There is an element of truth there; there is overuse in American health care. There are people who get things they don’t really need or should try something less intrusive and less expensive first. So you have this genuine issue of overtreatment, back surgery being the classic example. Many people will do just as well with physical therapy and things like that than they will with an $80,000 operation. In fact, they might do better with the PT and not with the $80,000 operation.

So is there any validity to the idea of making sure people get appropriate care? Yes, but they say no to stuff that they should be covering. That’s clear, and that patients don’t always know what the right pathway is, because doctors also have incentives, or just the way they’re trained and the way they look at their — surgeons like to cut. It’s what they’re trained to do. They trained for years. So it’s really complicated, because there’s this collision between overuse and overtreatment and overcharging and all the over, over, over stuff that comes from the provider world and the no, no, no, no, no, no, no, “you can’t have that” stuff that comes from the insurer world, sometimes appropriately, but often not appropriately.

Rovner: Then I guess you load onto that the private equity and now the providers whose overlords are in it to make a profit. Then you have sort of private equity butting heads with insurance, which is one of the reasons I think we are sort of ending up here. But it certainly does feel very reminiscent of things that I’ve been through before. We’re seeing yet a similar story with Medicare Advantage, which is the private Medicare managed care program that now enrolls more than half of the Medicare population and makes lots of money for its private insurance companies that offer them.

Rachel, your colleagues wrote about a Humana algorithm that was being used to deny care after a patient had received it for, quote-unquote, “an average period of time, regardless of the patient’s condition,” meaning that if patient is sicker than average, they were saying, “Too bad, we’re only going to give this to you for 18 days because that’s what the average patient needs. If you need more, sorry about that.” So Congress is now trying to get into the act, trying to ensure that Medicare patients, who tend to vote in disproportionate numbers, get their needed care. The insurance industry is pushing back against the pushback. What’s the outlook for Congress actually getting something done on this issue? I’ve heard a lot of talk. I haven’t seen a whole lot of action.

Cohrs: Yeah, I mean certainly there has been talk — and just to point out that the Humana lawsuit is related to the UnitedHealth Group lawsuit that we saw earlier; it’s the same company making the algorithm. Bob and Casey’s reporting was just more focused on UnitedHealth Group, because they got internal documents showing the correlation between the quote-unquote “recommendation” of this algorithm and care decisions and denials and people being cut off from their rehab services. So I think certainly, I think there has been a lot of outcry. We’re seeing this play out in the legal system beforehand. This is an issue that we’ve discussed as well.

Are we going to regulate through the courts, because everything else is too slow? I think AI is certainly a hot topic on the Hill at the moment, and there is lawmaker interest, but this is just a very complicated space. Lawmakers, though they might try their best, are not the most tech-savvy people. These are very powerful interests that I would imagine would oppose some of these regulations if they were to actually materialize. So, there’s nothing imminent. Certainly if we see these lawsuits keep piling up, if we see discovery, if we see some more examples of this happening where other companies are using the algorithms as well, a groundswell — as you mentioned, Medicare patients are an important constituency — I think we could see some action, but it’s not looking imminent at this time.

Kenen: The other thing is there’s been a number of reports from a number of media outlets, Stat and others, that these algorithms are being used without any people to work with them. Like, OK, here’s this algorithm and it’s doing these batches of like, I’m going to say no to 50,000 people in 20 seconds. I’m exaggerating a little bit there, but yes, is there legitimate questions about what is appropriate treatment? Yes.

Or you hear these stories about people told, “You can’t have this drug; you have to have that drug at first,” but they would try that drug and it didn’t work for them, and there’s just no way of — the reason we have five or six similar drugs is that in some cases, those slight differences, people respond differently, mental health being a huge example of that, right? Where it could be very hard to get people on the right drugs, if person A doesn’t respond the same way as person B, even if they have the same condition. But 50,000, I don’t know if that’s the right number, but I think I remember reading one where it was 50,000 going through an algorithm. That’s not appropriate use; that’s mass production of saying no to some legitimate needs.

Rovner: Sandhya, I see you nodding there. I know that this is something that’s kind of bipartisan, right? Members of Congress get complaints about Medicare, which is something that they do, members of Congress, oversee. It is a government program, even though these are being run by private companies. I’m sort of wondering when this is going to reach a boiling point that’s going to require something to be done.

Raman: I think with some of these issues that we face that are kind of evergreen here, there has been a bipartisan push to find kind of ways to reform the prior authorization process. We’ve had people as different as Sen. Elizabeth Warren (D-Mass.) and Sen. Mike Crapo (R-Idaho) say they want reform, or Sen. James Lankford (R-Okla.) is very different from Rep. Pramila Jayapal (D-Wash.), and they’ve both said that, similar things that …

Rovner: Some of the most conservative and the most liberal members of Congress.

Raman: Yeah, so we’ve got a broad stretch, but I think at the same time, if you look at some of the other things that we have to deal with here — Congress is out for the year, but for next year, we are fairly behind in that we have a long list of things that need to be extended by mid-January. Then we have just funding all of HHS and a number of other government things by early February. So getting something from start to finish next year, which is also an election year, is going to be tough. So I think that there’s interest there, but I don’t know that getting something hashed out is going to be the easiest next year of all years.

Rovner: Yeah, I think it’s fair to say that Congress took an incomplete in most subjects this year. Well, finally this week, the topic that I think has been in every podcast this year, which is abortion. One of the threads that has wound through this year’s coverage is the strong support for abortion rights from voters, even in red and red-ish states. This year, Ohio voters affirmed a right to abortion, twice actually; there was a technical vote back in the summer. And in Virginia, Democrats flipped the legislature by running against Republican promises to impose a compromise 15-week ban, which apparently did not seem to be a compromise to most of the voters. That was after a half a dozen states voted in favor of the abortion rights position in the 2022 midterms. So this week we have a pair of stories, one from Politico and one from The New York Times, about how anti-abortion forces are working to keep future abortion-related questions off of the ballot in states where there’s still that possibility, including Florida, Missouri, Arizona, and Nevada.

One Republican Missouri lawmaker said that the right to life, quote, “should not be taken away because of a vote by a simple majority,” which frankly felt a little breathtaking to me. He has filed a bill that would require ballot measures to pass not just statewide, but with a majority in more than half of the state’s congressional districts. So basically in the really red parts of the states, a majority there would also have to vote for this. These people are getting very creative in their attempts to stop these votes from happening, maybe because they don’t think they can win them if it’s just straight up or down.

Raman: I think one thing to look at is kind of how we see some of these similar tactics in the same way that we saw with Medicaid. When Medicaid expansion started winning on different ballots, there were states that tried to put in measures to kind of tamp that down, saying, “You need a higher threshold,” and maybe that doesn’t pass, but still putting in different tactics to reduce the likelihood of that passing. I think that’s kind of what we’ve been seeing here, whether or not it’s Ohio trying to change its threshold, or we’ve had states say that even if something passed, let’s try to tear that back so that it doesn’t actually get implemented, or ahead of the ones for next year, let us find tactics to reduce the likelihood they’ll get the signatures to be on the ballot or reduce the likelihood of it passing by changing the language or pushing for challenging the language.

So there’s kind of what we saw right after the Dobbs decision, which was just a very “throw spaghetti at the wall, see what sticks,” just kind of ramp up things and see what will work, given that the last — all of the elections that we’ve had post-Dobbs have been in the favor of abortion rights. Even when we’ve tried to pass an anti-abortion measure, it’s not passed at the ballot. In the stories that you mentioned, there was another quote that stuck out to me, where they’d also mentioned that maybe this should not be subject to majority vote, I think in the Politico piece as well. So I think that’s something that is interesting that I haven’t really seen vocalized before, that this should be done in a different manner rather than this is how the majority of people feel one way or the other.

Rovner: Yeah, it felt so ironic because when in the Dobbs decision, Justice [Samuel] Alito wrote, “Well, now we’re turning this back to the states to be decided by their voters.” Well, here are their voters deciding, and it turns out the anti-abortion side don’t like the way the voters are voting, so they’re going to try to not have the voters vote, basically. We will see how this one all plays out. The other continuing story this year is women being prosecuted basically for bad pregnancy outcomes. Last week we talked about the case of Brittany Watts, an Ohio woman who was sent home from a hospital emergency room twice, had a miscarriage, and this week had formal charges filed against her for, quote, “abusing a corpse.” This case hasn’t gotten nearly the attention of the case of Kate Cox, the Texas woman whose fetus was diagnosed with fatal defects and who filed suit to be allowed to have an abortion.

She eventually had to go to another state, and that was even before the permission that had been granted by a lower-court judge was overturned by the Texas Supreme Court. It may be at least in part because Brittany Watts is black, or that she didn’t put herself out in public the way Kate Cox did, but this is a way that prosecutors can punish women even in states where abortion remains legal. Remember Ohio voted twice this year to keep abortion legal, and this wasn’t even an abortion; it was a miscarriage. The medical examiner determined that the fetus was already dead when it passed. What are the prosecutors trying to do here? We talk about chilling effects. This is kind of the ultimate chilling effect, right?

Raman: It really is, because here we have someone that was not, as you said, seeking an abortion. She miscarried, and I think that she was 21 weeks and five days pregnant, and then they had the 21-week cutoff. So it gets sent into really murky waters here because I’m not sure what they’re going for, kind of picking this case to prosecute and go with. We’ve had this happen before where people have self-managed or miscarried, and then they’ve ended up being prosecuted. But at this point, I’m not sure why they’re making a case out of this particular woman, kind of dragging this into the debate.

Rovner: Yeah, there was a famous case in Indiana — 2013, may have been even before that — a pregnant woman who tried to kill herself and failed to kill herself, but did kill her fetus, and she was put in jail for several years. There have been, at least there was sort of the question there, were you trying to self-abort at that point? But there was nothing here. This was a woman with a wanted pregnancy whose pregnancy ended via natural circumstances, which happens, I think we’ve discovered now, a lot more than people realize.

I think people don’t talk about unhappy pregnancy outcomes, so people don’t realize how common they actually are. But I wonder — and I’ve been saying this all year — again, if women are fearing prosecution, even women who want babies, they may fear getting pregnant. I’ve seen some stories about more permanent types of birth control happening because women don’t want to get pregnant, because they don’t want to end up in a place where their health is being risked or they’re trying to get health care they need and their doctor or they could be facing prison time.

Kenen: And in this case, she had gone to the hospital. It’s complicated. She went in and out of the hospital. She went to the ER; they sent her home. I think then once they sent her home another time, she left against medical advice, but she wasn’t trying to get an abortion. She was having pregnancy complications. It’s documented. She was in and out of medical care. Pregnancies can fail, and early, the first trimester, it’s a very high rate. It’s less common later on, but it still happens. There are times when an early miscarriage, you might not even know that it’s a miscarriage. It’s early. You don’t know what’s even going on with your own body, or you’re not certain. So she didn’t know what to do at home when she did miscarry. It seems very punitive. Did she behave in an absolutely ideal, textbook-perfect, the way you wish she might have? But she did what she could do at the time.

Rovner: Yeah, it’s hard to know what to do. Well, we will watch this case, I think, even though it’s not, as I say, it’s not getting quite the attention of some of the other cases. Our final this week in health information of 2023 goes to an ad that came to my email from the All Family Pharmacy in Boca Raton, Florida. The headline is “Miracle Drug Ivermectin for Covid-19 Could Save Lives,” and it claims that, quote, “a growing body of evidence from dozens of studies worldwide demonstrates ivermectin’s unique and highly potent ability to inhibit SARS-CoV-2 replication and aid in the recovery from covid-19.”

That sounded not quite right to me, so I looked up some of the studies that they cited and found that most had been thoroughly debunked, that ivermectin is not really good treatment for covid-19. I even found one study from an open-access journal that had to publish a correction, noting that two of its authors were paid consultants to ivermectin manufacturers, though they had failed to disclose that conflict. Meanwhile, if you don’t want ivermectin or hydroxychloroquine, which the All Family Pharmacy also sells, they will also sell you semaglutide, which is the scientific name of the hard-to-get weight loss drug Ozempic. And they say their price even includes a doctor consult. I will post the links in the show notes. All right, that is this week’s news. Now we will play my interview with Jordan Rau about his long-term care financing series. Then we’ll come back with our extra credits.

I am pleased to welcome to the podcast my KFF Health News colleague Jordan Rau. I asked Jordan to join us to talk about his latest project, “Dying Broke,” done in partnership with The New York Times. It’s about the growing expense of long-term care and the declining ability of Americans to pay for it. Jordan, welcome to “What the Health?”

Jordan Rau: Glad to be here, Julie.

Rovner: So I want you to start with the 30-second elevator pitch about what you found working on this, for two years?

Rau: Just about. The big-picture view is that when you’re elderly, if you need long-term care, by which we’re talking about nonmedical things, like personal aides, if you need help in your daily activities going to the bathroom or eating or such, or if you have a cognitive impairment like dementia, it’s exceedingly expensive, except if you are destitute. The private market solutions, which are long-term care insurance, really don’t work, and most people don’t hold it. The government solution, which is Medicaid, is only available to you once you’ve exhausted just about all of your assets and have very low income. And that’s led the vast majority of people out on their own financially to either rely on themselves or their family or other people to take up the burden. And that burden is significant for the children of older people.

Rovner: So it’s not just nursing home care that costs more than all but the richest can afford; assisted living and home care, which people assume are going to be a lot cheaper and that maybe their retirement savings will cover — they’re also increasingly out of reach. Why has the price of long-term care gone up so much faster than Americans’ retirement savings?

Rau: All of medical inflation has gone up enormously, but I think a lot of it is that there’s so little regulation on prices. There’s frankly no regulation on prices of assisted living, and you don’t have a large payer that can control prices. That’s one of the good things about Medicare, is that they set their own prices and that’s helped keep prices down. That’s why it’s less expensive for Medicare to send someone to a nursing home than for someone to pay out-of-pocket. But there’s none of that. So the prices have just gone where they’ve gone, and now you have a scarcity of workers as well. So that’s driving up wages.

Rovner: People who’ve been socking away money and thinking they’re going to be able to pay for this themselves get kind of a rude awakening when they need, and it’s not — as you say, it’s not even medical long-term care; it’s just help with activities of daily living.

Rau: Yeah, yeah, yeah. I think one of the problems is that people assume they have the best-case scenario when they’re envisioning their retirement. They’re going to be off golfing, they’re going to be playing around with their grandkids, they’re going to be taking trips. The fact is, you’re very likely — if you live well into your 80s and 90s, as many people do — to not be able to live independently anymore, to need help with at least a little bit of things, and in worst-case scenario everything. People just don’t expect that that’s going to happen.

Rovner: So why do so many Americans still not know that Medicare doesn’t pay for long-term care? I feel like I’ve been saying this since 1980-something.

Rau: I wonder how much of it would’ve been different if they had decided to name Medicaid something that isn’t so close to Medicare. Maybe that would’ve helped, but realistically, everyone I think has a sense. Well, first of all, who’s paying attention to this stuff when you’re in your 30s and 40s, right? You’re not thinking about what’s going to happen to you in the 60s. And then I think that people just don’t expect that this is going to happen to them, and Medicare has a well-earned reputation as being pretty comprehensive. It doesn’t cover certain things, and there is a “donut hole” situation, so you’ve got to get supplemental. But people know that for the most part, it’s covered. And people don’t understand that long-term care, the nonmedical side, is — not just here, everywhere — it’s the backwater of health care. It’s not even considered health care in some ways.

So you just assume — I mean, I would assume, right, if Medicare is going to cover my heart transplant, why would I not think that it’s going to cover someone to come to my house a couple hours a day to help me with stuff or to put me in an assisted living facility if it covers nursing home care? It’s such a complicated, Byzantine system. You and I, we’ve been doing this probably combined, well, I don’t want to say how long, but it’s been a long time, and it’s hard for us to untangle exactly what is covered and what overlaps with what and what are the eligibility rules. So to expect a regular person, who isn’t paid to do this 50 hours a week, to know it is highly unrealistic.

Rovner: Yeah, and I was going to say the fact that Medicare actually has a home care benefit and it has a nursing home benefit; they’re just super limited. I think that sort of adds to the confusion too, doesn’t it?

Rau: Yeah. Well, even Medicare is confused about its home care benefit, right? There’s the whole Jimmo case and a whole debate about what you need to qualify for it.

Rovner: So listeners will know that long-term care and our country’s complete lack of a long-term care policy is a pet issue of mine and has been since I started writing about it in 1986. It isn’t like the government hasn’t tried to do something. There was the ill-fated Medicare Catastrophic Coverage Act in 1988 that ended up getting repealed. There were efforts to subsidize private long-term care insurance in the 1990s that didn’t really go anywhere, and there was the CLASS [Community Living Assistance Services and Supports] Act that was briefly part of the Affordable Care Act when it passed in 2010, only to be abandoned as financially unfeasible. Why has this been such a hard issue to address from a policy point of view?

Rau: The one-word answer obviously is money. It’s incredibly expensive. So to have that type of lift, it would be to expand either Medicaid or Medicare or to create a new program; would be inordinately expensive. But beyond that, I think basically, to do this, you either have to tag on something to one of those existing programs, which is a major expansion, or you have to have a mandatory insurance program. It could be a public one; it can be a private one. I think that it’s hard because it’s not universal. Auto insurance — everybody drives, right? So if you say, OK, you all know you’re going to drive, and people know like, Oh, I may get into an accident. So then you have a functioning insurance market.

Health insurance, sort of the same thing. Everyone knows that they’re going to need health insurance maybe next year. So that’s an easier sell. Even that, right, with the Affordable Care Act — that passed by just one vote. That was a heavy lift. So here you’re saying, here’s something that you may need but you very well may never tap. By the way, we want you to pay for it now or buy into it now, and it’s not relevant for your life until 30 years. I just think that’s a hard sell politically to the population, to the political system. It’s a hard sell.

Rovner: So if there was just one message that you hope people take away after reading this exhaustive series, what do you think it should be?

Rau: Printing the series out and frame it and put it on your wall would be my main message. But I would say that this stuff is so unpredictable that you really have to have some flexibility in your expectations and planning, because you can’t plan to not get early-onset dementia. You can’t plan to need help. So I think that you need to — people obviously need to have as much of a cash cushion as they can, and they need to bone up on this before it’s a crisis, because by the time it’s a crisis — and this is a problem, right, with health insurance too. By the time you’ve got the emotional and health issues, to throw on top of it a bureaucratic sort of financial issue is just so hard for most people to juggle. So there isn’t an easy solution, but it is important for people to realize that this is as much of a risk as smashing your car into a telephone pole and that you cannot have one answer.

Your answer cannot be like, “Oh, well I’m just going to stay in my house, because you may not be able to stay in your house.” Or your answer can’t be, “Well, I’m going to go into a fancy assisted living facility with a great chandelier and great food,” because unless you save an inordinate amount of money, even if you go in there, you may not be able to afford to stay there. So it’s really a recognition that you can’t really concretely plan for this, but you may very well not be able to live independently if you are lucky enough to live into your eighth and ninth decade.

Rovner: Great. Jordan Rau, anything I didn’t ask?

Rau: Never. Never, Julie.

Rovner: Jordan Rau, thank you so much for joining us.

Rau: Great to see you.

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

Cohrs: Sure. The story I chose is in ProPublica. The headline is “Doctors With Histories of Big Malpractice Settlements Work for Insurers, Deciding If They’ll Pay for Care,” by Patrick Rucker at The Capitol Forum and David Armstrong and Doris Burke at ProPublica. I think this article very much fits into the larger theme we were talking about earlier about insurance denials. This was pretty shocking still to me, of these instances of doctors with big malpractice settlements that had been disciplined by medical boards failing up essentially and getting jobs. If they can’t practice anymore, then they’re getting jobs in insurance companies instead, deciding whether a much larger volume of patients get care. So I think it was just a fascinating, really well-done investigation. It sounded like it was really difficult to match up all the records with the lawsuits and the settlements, and there aren’t necessarily databases that exist of what doctors work for insurance companies. So it was just really well done and just a really important space that we’ll continue to talk about.

Kenen: That was a great piece. These doctors are making $300,000 to $400,000 a year, these people who failed up, as Rachel just put it. Yeah.

Rovner: Yeah. That’s the perfect phrase. Sandhya.

Raman: My extra credit this week is called “Mississippi Community Workers Battle Maternal Mortality Crisis,” and it’s from my colleague at Roll Call Lauren Clason. This story also illustrates a combination of themes from this year. It touches on some of the maternal health inequities, the racial inequities, and rural health inequities, and how politics kind of comes into all of that. Mississippi Black women die at a rate four times higher than white women, and the state also leads in infant mortality rates nationwide. At the same time, it’s also a nonexpansion state for Medicaid. So Lauren went to Mississippi to look at some of the community and state-led groups that are trying to reduce these inequities that are caused by the different racial, socioeconomic, and access factors that are happening at the same time that an increasing number of hospitals are closing in the state.

Rovner: Also another really good story. Joanne?

Kenen: The theme of the day is yearlong, or decades-long in some cases, but ongoing health stories that have dominated the year. Another one that we didn’t touch on today but clearly is an ongoing multiyear health crisis is gun violence, which is a public health problem as well as a criminal justice problem. The Trace did a fantastic end-of-year project by Justin Agrelo. It’s called “Chicago Shooting Survivors, in Their Own Words.” They worked with both people who had survived shootings as well as people who had lost family members to shootings, and they worked with them about how to write and tell stories.

These five stories are in these people’s own words, and it was partnered with a bunch of other Chicago-based publications. They’re very powerful. In the introduction, they wrote that the Chicago media has been really good about trying to cover every homicide but that these people end up being defined by their death, not everything else about their life. These essays, they didn’t just talk about grief, which is obviously a huge — grief and trauma — but also the lives, not just the deaths. It’s really, really worth spending some time with.

Rovner: Yeah, and we haven’t talked as much as we probably should have about gun violence, but we will put that on the list for 2024. My extra credit this week is from Business Insider. It’s called “I Feel Conned Into Keeping This Baby.” It’s by Bethany Dawson, Louise Ridley, and Sarah Posner. It’s about an anti-abortion group that promised pregnant women financial support for their babies if they agreed not to get an abortion. But even though the women signed contracts, the group, called Let Them Live, did not provide the aid promised. Apparently they promised more money than they could raise in contributions. Now, I have heard of pregnancy crisis centers promising things like diapers and formula, but this group said it would help with groceries and rent and other significant expenses until it didn’t. Apparently the small print in the contract said the benefits could be reduced or stopped at any time. This was supposed to help answer the criticism that anti-abortion groups don’t actually care about the women, particularly after they give birth, except maybe promising things that you can’t deliver isn’t the best way to do that.

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

Raman: I’m @SandhyaWrites on both X and Bluesky.

Rovner: Rachel.

Cohrs: I’m @rachelcohrs on X, @rachelcohrsreporter on Threads.

Rovner: Joanne.

Kenen: @joannekenen1 on Threads. I’m occasionally on X — or, as you all know, I’ve been calling it Y — @JoanneKenen.

Rovner: We will be back in your feed in 2024. Until then, have a great holiday season, and be healthy.

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This story can be republished for free (details).

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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Quinto, 30, had been pinned on the ground for at least 90 seconds by police in California and stopped breathing. He died three days later.

Now his relatives are asking a federal judge to exclude any testimony about “excited delirium” in their wrongful death case against the city of Antioch. Their case may be stronger than ever.

Their push comes at the end of a pivotal year for the long-standing, nationwide effort to discard the use of excited delirium in official proceedings. Over the past 40 years, the discredited, racially biased theory has been used to explain away police culpability for many in-custody deaths. But in October, the American College of Emergency Physicians disavowed a key paper that seemingly gave it scientific legitimacy, and the College of American Pathologists said it should no longer be cited as a cause of death.

That same month, California’s Democratic Gov. Gavin Newsom signed the nation’s first law to ban the term “excited delirium” as a diagnosis and cause of death on death certificates, autopsy reports, and police reports. Legislators in other states are expected to consider similar bills next year, and some law enforcement agencies and training organizations have dropped references to excited delirium from their policy manuals and pulled back from training police on the debunked theory.

Despite all that momentum, families, attorneys, policing experts, and doctors say much remains to be done to correct the mistakes of the past, to ensure justice in ongoing trials, and to prevent avoidable deaths in the future. But after years of fighting, they’re heartened to see any movement at all.

“This entire thing, it’s a nightmare,” said Bella Collins, Angelo’s sister. “But there are silver linings everywhere, and I feel so fortunate to be able to see change happening.”

Ultimately, the campaign against excited delirium seeks to transform the way police deal with people undergoing mental health crises.

“This is really about saving lives,” said Joanna Naples-Mitchell, an attorney who worked on an influential Physicians for Human Rights review of excited delirium.

Changing Law Enforcement Training

The use of the term “excited delirium syndrome” became pervasive after the American College of Emergency Physicians published a white paper on it in 2009. It proposed that individuals in a mental health crisis, often under the influence of drugs or alcohol, can exhibit superhuman strength as police try to control them, and then die suddenly from the condition, not the police response.

The ACEP white paper was significant in catalyzing police training and policy, said Marc Krupanski, director of criminal justice and policing at Arnold Ventures, one of the largest nonprofit funders of criminal justice policy. The theory contributed to deaths, he said, because it encouraged officers to apply greater force rather than call medical professionals when they saw people in aggressive states.

After George Floyd’s 2020 death, which officers blamed on excited delirium, the American Medical Association and the American Psychiatric Association formally rejected it as a medical condition. Then came disavowals from the National Association of Medical Examiners and the emergency physicians’ and pathologists’ groups this year.

The moves by medical societies to renounce the term have already had tangible, albeit limited, effects. In November, Lexipol, a training organization used by thousands of public safety agencies in the U.S., reiterated its earlier move away from excited delirium, citing the California law and ACEP’s retraction of the 2009 white paper.

Lexipol now guides officers to rely on what they can observe, and not to guess at a person’s mental status or medical condition, said Mike Ranalli, a lawyer and police trainer with the Texas-based group. “If somebody appears to be in distress, just get the EMS,” he said, referring to emergency medical services.

Patrick Caceres, a senior investigator at the Bay Area Rapid Transit’s Office of the Independent Police Auditor, successfully pushed to remove excited delirium from the BART Police Department’s policy manual after learning about Quinto’s death in 2020 and seeing the American Medical Association’s rejection of it the following year.

Caceres fears that rooting out the concept — not just the term — more broadly will take time in a country where law enforcement is spread across roughly 18,000 agencies governed by independent police chiefs or sheriffs.

“The kinds of training and the kinds of conversations that need to happen, we’re still a long way away from that,” said Caceres.

In Tacoma, Washington, where three police officers have been charged with the 2020 death of Manuel Ellis, The Seattle Times reported that local first responders testified as recently as October that they still “embrace” the concept.

But in Colorado, the state’s Peace Officer Standards and Training board ruled on Dec. 1 to drop excited delirium training for new law enforcement officers, KUSA-TV reported.

And two Colorado lawmakers, Democratic state Reps. Judy Amabile and Leslie Herod, have drafted a bill for the 2024 legislative session banning excited delirium from other police and EMS training and prohibiting coroners from citing it as a cause of death.

“This idea that it gives you superhuman strength causes the police to think they should respond in a way that is often completely inappropriate for what’s actually happening,” Amabile said. “It just seems obvious that we should stop doing that.”

She would like police to focus more on de-escalation tactics, and make sure 911 calls for people in mental health crisis are routed to behavioral health professionals who are part of crisis intervention teams.

Taking ‘Excited Delirium’ Out of the Equation

As the Quinto family seeks justice in the death of the 30-year-old Navy veteran, they are hopeful the new refutations of excited delirium will bolster their wrongful death lawsuit against the city of Antioch. On the other side, defense lawyers have argued that jurors should hear testimony about the theory.

On Oct. 26, the family cited both the new California law and the ACEP rebuke of the diagnosis when it asked a U.S. District Court judge in California to exclude witness testimony and evidence related to excited delirium, saying it “cannot be accepted as a scientifically valid diagnosis having anything to do with Quinto’s death.”

“A defense based on BS can succeed,” family attorney Ben Nisenbaum said. “It can succeed by giving jurors an excuse to give the cops a way out of this.”

Meanwhile, advocates are calling for a reexamination of autopsies of those who died in law enforcement custody, and families are fighting to change death certificates that blame excited delirium.

The Maryland attorney general’s office is conducting an audit of autopsies under the tenure of former chief medical examiner David Fowler, who has attributed various deaths to excited delirium. But that’s just one state reviewing a subset of its in-custody deaths.

The family of Alexander Rios, 28, reached a $4 million settlement with Richland County, Ohio, in 2021 after jail officers piled on Rios and shocked him until he turned blue and limp in September 2019. During a criminal trial against one of the officers that ended in a mistrial this November, the pathologist who helped conduct Rios’ autopsy testified that her supervisor pressured her to list “excited delirium” as the cause of death even though she didn’t agree. Still, excited delirium remains his official cause of death.

The county refused to update the record, so his relatives are suing to force a change to his official cause of death. A trial is set for May.

Changing the death certificate will be a form of justice, but it won’t undo the damage his death has caused, said Don Mould, Rios’ stepfather, who is now helping to raise one of Rios’ three children.

“Here is a kid that’s life is upside down,” he said. “No one should go to jail and walk in and not be able to walk out.”

In some cases, death certificates may be hard to refile. Quinto’s family has asked a state judge to throw out the coroner’s findings about his 2020 death. But the California law, which takes effect in January and bans excited delirium on death certificates, cannot be applied retroactively, said Contra Costa County Counsel Thomas Geiger in a court filing.

And, despite the 2023 disavowals by the main medical examiners’ and pathologists’ groups, excited delirium — or a similar explanation — could still show up on future autopsy reports outside California. No single group has authority over the thousands of individual medical examiners and coroners, some of whom work closely with law enforcement officials. The system for determining a cause of death is deeply disjointed and chronically underfunded.

“One of the unfortunate things, at least within forensic pathology, is that many things are very piecemeal,” said Anna Tart, a member of the Forensic Pathology Committee of the College of American Pathologists. She said that CAP plans to educate members through conferences and webinars but won’t discipline members who continue to use the term.

Justin Feldman, principal research scientist with the Center for Policing Equity, said that medical examiners need even more pressure and oversight to ensure that they don’t find other ways to attribute deaths caused by police restraint to something else.

Only a minority of deaths in police custody now cite excited delirium, he said. Instead, many deaths are being blamed on stimulants, even though fatal cocaine or methamphetamine overdoses are rare in the absence of opioids.

Yet advocates are hopeful that this year marks enough of a turning point that alternative terms will have less traction.

The California law and ACEP decision take “a huge piece of junk science out of the equation,” said Julia Sherwin, a California civil rights attorney who co-authored the Physicians for Human Rights report.

Sherwin is representing the family of Mario Gonzalez, who died in police custody in 2021, in a lawsuit against the city of Alameda, California. Excited delirium doesn’t appear on Gonzalez’s death certificate, but medical experts testifying for the officers who restrained him cited the theory in depositions. 

She said she plans to file a motion excluding the testimony about excited delirium in that upcoming case and similar motions in all the restraint-asphyxia cases she handles.

“And, in every case, lawyers around the country should be doing that,” Sherwin said.

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).