The U.S. Centers for Disease Control and Prevention (CDC) announced on Friday that it is investigating reports of "a few botulism-like illnesses in several states resulting from botulinum toxin injections (commonly called ‘Botox’) administered in non-medical settings," the agency said in a statement.

"We are coordinating a multi-state outbreak investigation," the agency added. 

WHAT EXACTLY IS BOTOX?

Illnesses have been reported to the Tennessee and Illinois health departments, which are working with the CDC and the Food and Drug Administration (FDA) on the investigation, the CDC noted.

In Tennessee, four patients sought medical care after experiencing "botulism-like signs and symptoms" after receiving Botox injections for cosmetic purposes, according to an online statement from the Tennessee Department of Health.

Two of the patients were hospitalized.

"Joint investigations have identified concerns about use of counterfeit products or products with unclear origin administered in non-medical settings such as homes or cosmetic spas," the statement said.

The Illinois Department of Public Health issued a similar statement after two patients reported receiving potentially counterfeit Botox injections in LaSalle County.

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The two individuals reported symptoms that included blurred/double vision, droopy face, fatigue, difficulty breathing, shortness of breath and hoarse voice, the statement said.

The patients, both of whom were hospitalized, received the injections from a licensed nurse who was "performing work outside her authority."

Additional cases have been reported in Kentucky, Washington and Colorado.

"The sources of these botulinum toxin products are unknown or unverified at this time," the CDC stated. 

"Questions about product regulation and product investigation should be directed to the FDA."

Botulism is a "serious and sometimes fatal" illness that occurs when a toxin attacks the body’s nerves, according to the CDC.

Initial symptoms usually include muscle weakness around the eyes, face, mouth and throat, which could also spread to the neck, arms, torso and legs.

Other symptoms can include blurred or double vision, difficulty breathing, trouble swallowing, drooping eyelids, slurred speech and difficulty moving the eyes.

"What’s particularly concerning are the respiratory problems that some are experiencing," Dr. Salar Hazany, a certified dermatologist and reconstructive surgeon at Scar Healing Institute in Beverly Hills, told Fox News Digital.

"If the wrong patient begins having trouble with their breathing, it could be fatal."

Dr. Craig Lehrman, director of aesthetic surgery at The Ohio State University Wexner Medical Center, noted that fake Botox has been an issue since the early 2000s.

"Unfortunately, I treat several patients a year who have received non-approved injectables of things they are told to be safe, which ends up having serious consequences," he told Fox News Digital.

"It has mostly been linked to injections in settings such as someone's home or a poorly regulated med spa."

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Botox is made from a specific type of Clostridium botulinum, a bacteria that produces paralysis in the muscles where it is injected, he said.

"The people receiving the presumed counterfeit Botox are suffering from an illness that is similar to botulism, caused by the same bacteria," he said.

There are strict safety criteria for the use and storage of Botox, and serious risks come with the injection of fraudulent or poorly managed products, Lehrman warned. 

"Botulism can carry detrimental effects ranging from infection, to permanent deformity, to serious wound formation."

"​​Cosmetic injections should be an FDA-approved product, administered by licensed providers and in licensed settings," the CDC stated. 

There has been a large increase in the number of people offering these services who are not board-certified in the fields of plastic surgery, dermatology or ENT, according to Lehrman. 

PLASTIC SURGERY DEATHS HAVE SPIKED AMONG US PATIENTS WHO TRAVELED TO DOMINICAN REPUBLIC: CDC REPORT

"I would advise potential patients to do their research on the person who will be injecting them — and not just search for the cheapest option," he said. 

"I would recommend going to a center that has rigorous standards of education and a track record of safety."

In most cases, Botox injections are safe, according to experts.

"Laboratory-confirmed cases of systemic botulism occurring after cosmetic or therapeutic injections of botulinum toxin are rare," the CDC said in its statement.

Millions of injections are performed each year by licensed medical providers and have been shown to be safe when done in the correct manner, Lehrman added.

"Those considering Botox should research the background of the provider and make sure that the practice has not racked up a number of complaints," added Hazany.  

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"Do not go to an unlicensed provider. If the offer seems too good to be true, it probably is."

Anyone who experiences botulism-like symptoms following an injection should seek medical attention, according to health officials.

Fox News Digital reached out to Abbvie (manufacturer of Botox), the FDA, the Tennessee Department of Public Health, and the Illinois Department of Public Health requesting comment.

For more Health articles, visit www.foxnews.com/health. 

One of the molecules responsible for triggering the inflammation that causes allergic respiratory diseases, such as asthma and allergic rhinitis, has just been discovered by scientists from the CNRS, Inserm and the Université Toulouse III – Paul Sabatier.

The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

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

The Arizona Supreme Court shook up the national abortion debate this week, ruling that a ban originally passed in 1864 — before the end of the Civil War and decades before Arizona became a state — could be enforced. As in some other states, including Florida, voters will likely have the chance to decide whether to enshrine abortion rights in the state constitution in November.

The Arizona ruling came just one day after former President Donald Trump declared that abortion should remain a state issue, although he then criticized the ruling as having gone “too far.”

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

Panelists

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories.

Rachel Roubein
The Washington Post

@rachel_roubein

Read Rachel's stories.

Rachel Cohrs Zhang
Stat News

@rachelcohrs

Read Rachel's stories.

Among the takeaways from this week’s episode:

• Former President Donald Trump’s remarks this week reflect only the latest public shift in his views on abortion access. During an appearance on NBC’s “Meet the Press” in 1999, he described himself as “very pro-choice,” but by the 2016 presidential campaign, he had committed to nominating conservative Supreme Court justices likely to overturn the constitutional right to an abortion. Trump later blamed Republican losses in the 2022 elections on the overturning of that right.
• Arizona officials, as well as doctors and patients, are untangling the ramifications of a state Supreme Court ruling this week allowing the enforcement of a near-total abortion ban dating to the Civil War. Yet any ban — even one that doesn’t last long — can have lasting effects. Abortion clinics may not survive such restrictions, and doctors and residents may factor them into their decisions about where to practice medicine.
• Also in abortion news, an appeals court panel in Indiana unanimously ruled that the state cannot enforce its abortion ban against a group of non-Christians who sued, siding with mostly Jewish plaintiffs who charged that the ban violates their religious freedom rights.
• A discouraging new study finds that paying off an individual’s medical debt once it has reached collections doesn’t offer them much financial — or mental health — benefit. One factor could be that the failure to pay medical debt is only a symptom of larger financial difficulties.

Also this week, Rovner interviews KFF Health News’ Molly Castle Work, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” feature about an air-ambulance ride for an infant with RSV that his insurer deemed not to be medically necessary. If you have an outrageous or baffling medical bill you’d like to send us, you can do that here.

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

Julie Rovner: Stat’s “Your Dog Is Probably on Prozac. Experts Say That Says More About the American Mental Health Crisis Than Pets,” by Sarah Owermohle.

Rachel Cohrs Zhang: KFF Health News’ “Ten Doctors on FDA Panel Reviewing Abbott Heart Device Had Financial Ties With Company,” by David Hilzenrath and Holly K. Hacker.

Alice Miranda Ollstein: The Texas Tribune’s “How Texas Teens Lost the One Program That Allowed Birth Control Without Parental Consent,” by Eleanor Klibanoff.

Rachel Roubein: The Washington Post’s “As Obesity Rises, Big Food and Dietitians Push ‘Anti-Diet’ Advice,” by Sasha Chavkin, Caitlin Gilbert, Anjali Tsui, and Anahad O’Connor.

Also mentioned on this week’s podcast:

• Live Action’s “Hi, My Name’s Olivia” video.
• The New York Times’ “Insurers Reap Hidden Fees by Slashing Payment. You May Get the Bill,” by Chris Hamby.
• The Nation Bureau of Economic Research’s “The Effects of Medical Debt Relief: Evidence From Two Randomized Experiments,” by Raymond Kluender, Neale Mahoney, Francis Wong, and Wesley Yin.
• USA Today’s “The Database You Don’t Want to Need: Check to See if Your Health Data Was Hacked,” by Cecilia Garzella.

Click to open the transcript

Transcript: Arizona Turns Back the Clock on Abortion Access

[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 11, 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: Rachel Cohrs Zhang of Stat News.

Rachel Cohrs Zhang: Hi, everybody.

Rovner: And we welcome back from her leave Rachel Roubein of The Washington Post.

Rachel Roubein: Hi, happy to be here.

Rovner: Later in this episode we’ll have my interview with my KFF Health News colleague Molly Work about the latest KFF Health News-NPR “Bill of the Month,” about yet another very expensive air-ambulance ride that an insurer deemed “unnecessary.” As you will hear, that is hardly the case.

But first, this week’s news, and there is lots of it. We start again this week with abortion because, again, that’s where the biggest news is. I want to do this chronologically because there were a lot of things that happened and they all built on each piece before them. So on Monday, former President [Donald] Trump, as promised, issued his long-awaited statement on abortion, a four-minute video posted on his platform Truth Social, in which he took credit for appointing the justices who overturned Roe v. Wade, but then kind of declared the job done because abortion is now up to the individual states. And while he didn’t say so directly, that strongly suggested he would not be supporting efforts by anti-abortion groups to try to pass a federal 15-week ban, should Republicans retake the presidency and both houses of Congress. That alone was a big step away from some of his strongest anti-abortion supporters like the SBA List [Susan B. Anthony Pro-Life America], which helped got him elected in 2016, right, Alice? I see you nodding.

Ollstein: Yes. He kind of left himself some wiggle room. He made a statement that, at first, people could sort of read into it what they wanted. And so you had several anti-abortion groups going, “Well, he didn’t advocate for a national ban, but he also didn’t rule it out.” But then, as I’m sure we’ll get to, he was asked follow-up questions and he kind of did rule it out. He kind of did say, “No, I wouldn’t sign a national ban if it were presented to me.” And so the little crumbs of hope anti-abortion groups were picking up on may or may not be there. But it was both notable for what he did say and what he didn’t say. There are still a lot of unanswered questions about what he would do in office, both in terms of legislation, which is really a remote possibility that no one thinks is real, but he didn’t say anything.

Rovner: It would need 60 votes in the Senate.

Ollstein: Exactly.

Rovner: Legislation.

Ollstein: Exactly. And no one really on the right or left thinks that is going to happen, but he didn’t say anything about what he would do with executive powers, which, as we’ve discussed, could go a long, long way towards banning abortion nationwide.

Rovner: One of the things that sort of fascinates me, I’ve been covering abortion for a long time, longer than some of you have been alive, and I have seen lots of politicians switch sides on this. I mean, Joe Biden started out as very anti-abortion, now very in favor of abortion rights. So I’ve seen politicians go both ways, but the general rule has always been you get to switch once. You get to either go from being pro-life to pro-choice or being pro-choice to pro-life. You don’t get to go back and forth and yet that seems to be very much what Trump has done. He seems to have taken every conceivable position there is on this extraordinarily binary issue and gotten away with it.

Ollstein: One last thing I wanted to flag in the statement was that he kind of said the quiet part out loud and that he directly said that this is about winning elections. So he’s saying, “This is what we need to say in order to win,” which leaves open what he really believes or what he really would do.

Roubein: Yeah, I mean, going back to Trump’s shifting view on abortion, because that’s really important and that’s something that the anti-abortion movement is sort of looking towards. I mean, in 1999 in an interview in “Meet the Press,” he called himself “very pro-choice,” and then we kind of saw by 2016, he had committed to naming justices who had anti-abortion views. And as Alice mentioned then, after the midterms in 2022, he blamed Republican losses on that.

Rovner: Yeah, I assume that makes it hard for people who try to follow him. I know [Sen.] Lindsey Graham came out, Lindsey Graham, who’s been sort of the major backer of the 15-week abortion ban in Congress for some time now, and suddenly Lindsey Graham, who has been nothing but loyal to Trump, finds himself on the other side of a big, important issue. I mean, Trump seems to get away with it. The question is, are his followers going to get away with having different positions on this?

Cohrs Zhang: Oh, I also just wanted to say that I think it’ll be interesting to see who Trump chooses as his running mate on this because obviously his opinion and his position is very important, but I think we saw kind of last time around with him leaning on Mike Pence a little bit for credibility with the anti-abortion movement. So I think it’ll be interesting to see whether he chooses someone again who can mend some of these relationships or whether he’s just going to carry on and make those decisions himself and lean less on his VP.

Rovner: Well, let’s move on to Tuesday because on Tuesday the Trump abortion doctrine got a pretty severe test from the Arizona Supreme Court, which ruled that an almost absolute abortion ban that was passed in 1864, before Arizona was a state, before the end of the Civil War, can be enforced. Alice, what’s this law and when might it take effect?

Ollstein: So the Supreme Court kicked some of those issues back down to the lower court and so it’s still being worked out. Currently, abortion is banned after 15 weeks of pregnancy. The total ban could go into effect in a little over a month, but it’s really uncertain. And so you’re seeing a lot of the same fear and confusion that we saw in the immediate aftermath of Dobbs [v. Jackson Women’s Health Organization], where providers and patients don’t know what’s legal and whether they can provide or receive care and are, in some instances, over-complying and holding off on doing things that are still legal.

And so just a great example of how Trump and these national political figures, they can take whatever position they want, but that often gets overtaken by events. And so you saw Trump come out and say, “States should decide.” This is arguably an instance of states deciding, although the Supreme Court upholding a law from when no one was currently alive, was part of that, the law was implemented when women couldn’t vote, when Arizona wasn’t even a state yet. So whether this is an example of “will of the people,” that can be debated. But this is an example of “leave it to states.” And then Trump was asked about the Arizona decision, whether it went too far, and he said “Yes, it did go too far.” So it’s like should states be allowed to decide or not?

Rovner: It’s like, “Leave it to states unless they go too far.”

Roubein: And who decides what too far is, because a lot of anti-abortion groups were very complimentary of the Arizona ruling and said it was the right thing to do. So depends who you ask.

Rovner: So this obviously scrambles politics beyond just the presidential race, although I think it’s pretty clear to say that it puts Arizona, which had been teetering as being sort of purple state-ish, right back in play, but it’s going to affect things down the ballot and in other states, right?

Ollstein: I mean just looking at Arizona, I mean abortion rights and Democrats have really been pushing ballot measures here, and, I think as Julie was alluding to, there’s a ballot measure effort in Arizona, and I believe the organizers have said that they have enough signatures to qualify, then there’s steps to actually qualifying. So that’s going to really put a spotlight on Arizona. But, we’ve seen ballot measures in other states, Florida. Democrats really want Florida to be in play now that there’s been a Florida state Supreme Court ruling and there’s a ballot measure there. The threshold’s higher, it’s 60%, but all around the country it’s going to be putting increasing emphasis on this ballot measure effort.

Rovner: So the Republicans now really have no place to hide. I saw there was a Senate candidate in Wisconsin who had been very completely anti-abortion, now seems to be a lot less anti-abortion. I mean Republicans have spent a lot of time putting Democrats on the spot about not wanting to be specific on their abortion position, and that’s what leads to the, “You support abortion up until the ninth month,” which isn’t a thing. But now I feel like it’s a chance for Democrats to turn this on Republicans saying, “Now you have to say exactly what your position is rather than just you are ‘anti-abortion’ or ‘100% pro-life,’ which for many, many elections was plenty and all the candidates needed to say.

Cohrs Zhang: Just as we talk about all of these different, how this is playing out, certainly I think the instance you brought up was an example of a position on the larger issue of what a candidate is going to support generally, but I think there are these kind of tangential local issues too that candidates are going to have to take positions on. I think if we look back, like IVF, that’s something that candidates have never really had to weigh in on, and I think it is going to become local in a new way, which just seeing all these offshoot rulings and court decisions. And I think that it was an excellent catch, and, certainly, it’ll be interesting to see how candidates move across the spectrum as we see some more and more extreme local cases coming up even beyond the national standard.

Rovner: And as Alice points out, this is more than just political. This affects health care on the ground. Doctors either not wanting to train in states that have strict bans or doctors in some cases picking up and leaving states, not wanting to be threatened with jail or loss of license. So that affects what other kinds of women’s health care is available. Alice, you wanted to add something?

Ollstein: Yeah, I’ve been seeing a lot of people saying, both with the Florida ruling and with the Arizona ruling, so in both of these instances, a very sweeping abortion ban is expected to go into effect, but then there’s going to be a ballot referendum in the fall where voters will have the opportunity to get rid of those bans. And so you’re seeing a lot of people saying, “OK, well this is only temporary. Voters will be so outraged over this that they’ll vote to support these ballot measures to overturn it.” But I think it’s important to remember that a lot of the impacts will linger for a long time if these clinics can’t hang on even a few months under a near-total ban and shut their doors. You can’t just flip a switch and turn that back on. It’s incredibly hard to open a new abortion clinic.

Rovner: Or even to reopen one that you’ve closed down “temporarily.”

Ollstein: Exactly. And like you said, medical students and residents and doctors are making decisions about where to live and where to practice that could have impacts that last for years and years. And so people saying, “Oh, well, it’s not that important if these bans go into effect now because in November voters will have their say.” Even a few months can have a very long effect in a state.

Rovner: Yeah. I just want to continue to reiterate this is about more than politics. This is actually about health care on the ground.

Well, in other abortion news, a three-judge panel of the Indiana Court of Appeals ruled last week that the state cannot enforce its abortion ban against a group of plaintiffs who are non-Christians and charge that the ban violates their freedom of religion because some religions, notably Judaism but others too, include tenets that prioritize the life and health of the pregnant woman over that of the fetus. This is obviously not the last word on this case. It could still go to the Indiana Supreme Court or even the U.S. Supreme Court, but it does seem significant. I think it’s the first decision we’ve seen on one of these cases, and it was unanimous. And interestingly, it turns a lot of the recent decisions protecting religious freedom for Christians right back on those who would ban abortion. Alice, there are more of these … awaiting hearing, right?

Ollstein: Yes. There’s ones going on really around the country that are testing these legal theories, and part of it is that state-level religious freedom laws are often more expansive and protective than federal religious freedom laws. And so they’re leaning on that. And yeah, it’s a really fascinating test case of, were these religious freedom laws intended to only protect one particular religion that has hegemonic power in the United States right now or were they designed to protect every one of every religion? And I think Judeo-Christian values is a term that’s thrown out a lot, and this really shows that there are very different beliefs when it comes to pregnancy and abortion and which life to prioritize between the mother and the child. And when it even counts as an abortion, when it even counts as life beginning, that is a lot more muddled.

And look, in this case it was led by Jewish plaintiffs challenging, but I’ve been tracking cases that draw from many different religions, and these protections even apply to avowed atheists in some instances. And so I think this is definitely something to keep an eye on. In addition to Indiana, the other case I’ve been following most closely is in Missouri, so it’ll be really fascinating to see what happens.

Rovner: There was one in Kentucky, too. Did anything ever happen with that one? I think that was the first one we talked about.

Ollstein: They’re still waiting.

Rovner: Like two years ago.

Ollstein: Yeah. The wheels of justice turn slowly.

Rovner: Indeed, they do. Well, finally, Tennessee is on the verge of enacting a bill that would require students to be shown a three-minute video on fetal development and strongly recommends one made by the anti-abortion group Live Action. Not surprisingly, medical experts say the video is inaccurate and manipulative. I will post a link to it so you can watch it and judge for yourself. What jumped out to me in this story is that one Tennessee lawmaker, himself a physician, said, and I quote, “Whether all of the exact details are correct, I don’t think that is important.” Is that where we have come with this debate these days, that facts are no longer important?

Cohrs Zhang: I mean, I thought it was interesting that there was an amendment rejected that would’ve allowed parents to opt out of it. And I just feel like there’s so many permission slips in schools these days for any book or movie that something like this would be mandated is just kind of like an interesting twist on that. So again, we’ll be interested to see if it actually takes effect, but …

Rovner: I mean, it’s a pretty benign video. It’s basically purporting to show fetal development from the moment of fertilization up to birth. The big complaint about it is it’s misleading on the timing because it’s counting from a different place than doctors count from. It’s counting from the moment of fertilization. Doctors generally count pregnancy from the last missed period because it’s hard to tell. You don’t know when the moment of fertilization was. But when we talk about first trimester or however many weeks, medically you’re talking about weeks since last missed period. So this makes everything look like it happened earlier than it actually does in common parlance. Have I explained that right, Alice?

Ollstein: Yes. And we are seeing efforts on this front both to make these educational mandates for students, but we’re also seeing them mandated for doctors’ education in some states as well. Part of this is to address what everyone on all sides acknowledges is a problem, which is that doctors don’t understand when the exemptions to these abortion bans apply in terms of life and health of the parent coming into play. Oftentimes these bans are written with nonmedical language talking about serious threats. What’s serious? Talking about harm to a major bodily function. What’s major? So, you are seeing doctors holding off from providing abortions even in cases that they think should be exempt, these emergency situations, and so anti-abortion groups are pushing these bills mandating certain curricula for doctors to try to address this confusion. The medical groups I’ve spoken to don’t think this is a solution, but it’s interesting as an attempt.

Rovner: In some states, it has to be an affirmative defense. So as you, a doctor, consider an emergency, you perform the abortion and then instead of not getting charged, you get charged and you have to go hire a lawyer and go to court and say, “I decided that this was an emergency.” And that’s not something that’s very attractive to doctors either. And Rachel, you wanted to add …

Roubein: Oh yeah, I was just going to say I think one of the things that stuck out to me about this particular video, one of my colleagues, Dan Rosen, so I [inaudible 00:16: 52] in February, and he said that this is Live Action, which is the group that came under the spotlight in 2011 for releasing undercover videos seeking to discredit Planned Parenthood, but Live Action had been playing the Baby Olivia to legislative audiences, including at an influential conservative group, American Legislative Exchange Council. So just kind of looking at who’s kind of seeking to get this video into classrooms.

Rovner: All right, well now it is time for our weekly dive into why health care costs so darn much. We begin with a fascinating and infuriating investigation from The New York Times about another one of those third-party contractors most of us had never heard of, kind of like Change Healthcare before it got hacked. This one is called MultiPlan, and its job is to recommend how much insurers and/or employers, in self-insured plans, should pay providers. Except it turns out that MultiPlan has an incentive to pay providers less than they charge. It pockets part of the “savings.” And in most of the cases, these out-of-network charges are not covered by the surprise-billing law. I think because patients know they are going out-of-network, that part is not entirely clear to me. And of course, often patients have no other available providers, so they have no choice but to go out-of-network.

Sometimes indeed providers do overcharge outrageously. We’ve talked about that a lot. But in this case, it seems that a lot of these recommendations are to underpay outrageously. The firm told one therapist that her fair payment should be half of what Medicaid pays. Medicaid, traditionally the lowest payer of everyone. I feel like this story’s going to have legs, as they say. Apparently, the American Hospital Association has already asked the U.S. Department of Labor to investigate MultiPlan. Why do I feel like we’re all pawns in this huge competition between health care providers and insurers about who can pay who less or more and pocket the differences?

Cohrs Zhang: Yeah, I think we first heard about MultiPlan, kind of in the conversation around surprise billing, because that was just a different category of these out-of-network bills where patients were getting stuck in the middle. And I think over time we’ve seen more stories come out about loopholes in those protections. And this is another example where MultiPlan is … they have to fix their business model. And the arbitration process for these surprise bills is so backed up, in these certain cases, which are more emergency care, I think, and if patients don’t necessarily have control or knowledge of their provider being out-of-network.

But certainly, people, if you’re looking for a certain specialist or want to go to a certain place to have a procedure done, then you may just elect an out-of-network provider. And I think the part I found really interesting about this reporting, that I think we’ve seen reflected in larger trends on business reporting, is really understanding these business models better and the incentives. And I love the graphics, I think, where you’re showing that if MultiPlan can lowball these providers and manage to squeeze a little bit more of a discount for payers, then they’re taking a cut of that discount, and patients can be left on the hook for these too.

So I think, as with anything, these surprise-billing protections are going to be an iterative process. And certainly I think there’s more to be done in so many different individual cases to protect patients from some of these games that providers and insurers are engaged in and the firms that kind of specialize in brokering these negotiations.

Rovner: It feels very whack-a-mole, every time they sort of put a band-aid on one problem, another one pops up, that it’s just sort of this is what happens when a fifth of your economy goes to health care is that everybody says, “Oh, I can make money doing X.” And then, there’s an awful lot of people making money doing X, which is not necessarily having anything to do with providing or receiving medical care.

Cohrs Zhang: Absolutely. And correct me if I’m wrong, I think MultiPlan, it may be publicly traded as well. So if you look at some of these incentives here to kind of meet those quarterly targets and how that aligns with patients, I think that’s also just something we keep in mind.

Rovner: And there was private equity involved on both sides, too, which I didn’t even want to try to explain. You should really read the story, which is really very complicated and very well explained. Because this is how it works: They make it complicated so you can’t figure out what’s going on.

Well, meanwhile, in a sad payment story of the week, a new study has found that paying off people’s medical debt doesn’t actually fix their financial problems. According to a National Bureau of Economic Research working paper, paying off debts that have already gone to collection did not improve the financial status of the people who owed the money, nor their mental health, nor did it make it more likely that they would be able to pay future medical bills. One thing it did do was help their credit ratings. The researchers said that they hope maybe paying off debt before it reaches the collection status might be more helpful, but that would also be more expensive. What makes it easy to pay off medical debt after it’s gone to collections is they sell it for pennies on the dollar. And of course, the U.S. is already moving towards taking medical debt off of people’s credit report. So obviously we’re talking about patients getting stuck with these huge bills and they end up with this medical debt and now we can’t seem to figure out how to fix the medical debt problem either.

Cohrs Zhang: When I first saw the study, obviously I trust that Sarah Kliff edited her studies, but I scrolled right down to the conflict-of-interest section to see who funded this. And yeah, it was a very depressing study. But I think it’s important to keep in mind that a failure to pay medical debt is a symptom of larger economic problems. Certainly there may be cases where medical debt is the only outstanding debt somebody has or is a shocking surprise or is a lien on their home, something like that that might have just these massive consequences.

But I think one of the points that was brought up in the story was that when you have medical debt, sure, you have collections calls, you have bad impact on your credit, but you’re not getting evicted from your home. And we’ve heard about cases where providers have held outstanding balances against patients, but I don’t think that’s a general practice. You’re supposed to be seen if you go in for medical care. So I think just like the day-to-day challenges of poverty, of debt, are so overwhelming that it is a little discouraging to hear that these individual payments may not have changed someone’s life. But I think there may be anecdotal cases that would be different from that larger trend, but it was not an encouraging study.

Rovner: No. And speaking of conflict of interest, there was the opposite of conflict of interest. It was conducted in part by the group RIP Medical Debt, which was created to help pay off people’s medical debt. And they did say, obviously there are cases in this does make huge differences in individual people’s lives. It was just that, overall, apparently the model by which they are paying off people’s debt is not helping them as much as I guess they had hoped to. So they have to look on to other things.

Moving on to this week in health data security, or lack thereof, it seems that another cyberattack group is trying to get Change Healthcare to pay ransom. This is after the company reportedly paid $22 million. So it seems that after paying, the company didn’t get all of its stolen records back. Meanwhile, it seems that even though we’re not hearing as much about this as we were, there are still lots of providers that aren’t getting paid. I mean, Rachel, this thing as we predicted, has a really long tail.

Roubein: Absolutely does. Yeah, I think we’re seeing these multiple ransomware groups trying to extort money out of UnitedHealthcare. I mean, they have deep pockets. It’s such a mess. I think, who’s to say what’s true about what data they have as well. So it’s kind of hard to report on these kind of things. And I think only UnitedHealthcare has the answers to those questions. But I think we are going to see some more congressional oversight on this issue. I know providers, hospitals, and physician groups were absolutely using these arguments on Capitol Hill during the appropriations negotiations. They’re saying, “We’re in such financial distress.” Going to their lawmakers talking about how it wouldn’t be a good idea to cut provider payments or implement site-neutral payments for hospitals, all these long-term things that lawmakers have been thinking about. There were other political problems, too, but I think it’s definitely seeped into Washington how difficult this has been, how cumbersome some of the workarounds are for providers, large and small, I think who are trying to work around this fiasco.

Rovner: Yeah, I read one story, I mean it really does feel like a spy movie that they’re assuming that maybe the company that got the ransom that was supposed to split it with the company that actually did the hacking didn’t and made off with the money. And now the company that actually did the hacking is trying to get its own ransom and oh my goodness. I mean, again, this is what happens when a fifth of the economy goes through the health care system. But I mean, I want to keep on this story because this story really does keep on impacting the back-room goings-on, which keep the health care system functioning in some ways.

And while we are on the subject of health care data breaches, USA Today has now a searchable tool for you to find out if you’re one of the 144 million Americans whose medical information was stolen or exposed in the last year. Yay? I think? I suppose this is a necessary evil. It’s hard for me to imagine 10 years ago. It’s like, “Wow, you can take some time and find out if your medical information’s been exposed.”

Roubein: It’s better than not knowing because you can change your passwords, you can do some credit monitoring, you could protect your information in some ways. But it’s not the same as better protections for the breaches happening in the first place.

Rovner: I know Congress is talking about a privacy bill, but apparently it is in truly embryonic stages at this point because I don’t think Congress really knows what to do about this either. They just know that they probably should do something.

All right, that is the news for this week. Now we will play my bill of the month interview with Molly [Castle] Work. Then we will come back and do our extra credits.

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

Molly Castle Work: Thanks so much, Julie.

Rovner: So this month’s bill, like last month’s bill, is for an air-ambulance ride, a bill that should have been prevented by the federal No Surprises Act. But we’ll get to that in a minute. First, who is our patient this month?

Work: So our patient is Amari Vaca. He was a 3-month-old baby at the time from Salinas, California.

Rovner: And what happened to him?

Work: When Amari was a 3-month-old baby, he had issues with his breathing. His mother took him to a local ER and pretty quickly his team of doctors decided that he needed more specialized care at a larger hospital in San Francisco. So they organized an emergency transport.

Rovner: Via helicopter, yes?

Work: It was actually by air ambulance. So like a small airplane.

Rovner: Ah. OK. And before we get too far, he’s OK now, right?

Work: Yes, he is OK. Unfortunately, he was transported to the hospital. He was there for three weeks. They diagnosed him with RSV, but he’s fortunately doing well, now.

Rovner: Well, and then as we say, the bill came. And how much was it?

Work: It was $97,599.

Rovner: Of which the insurance paid how much?

Work: Zero.

Rovner: Now, as I mentioned at the top, the federal surprise-billing law should have prevented the patient from getting a big bill like this, except it didn’t in this case. So why not?

Work: Yeah, so this was really interesting. Cigna, which was Amari’s health plan at the time, decided that the care was not medically necessary. Their argument was that he could have taken a ground ambulance. There was nothing to prove that he had to take this emergency airplane. And so, because of this, Cigna was able to avoid No Surprises Act and they didn’t pay for any of the bill.

Rovner: And, therefore, the patient was left on the hook.

Work: Yes. Amari and his family were left on the hook for the entire bill.

Rovner: So this feels like something that should have been taken care of with a phone call. The insurer calls the doctor and says, “Hey, why’d you order an air ambulance when the hospital’s only 100 miles away?” And the doctor says, “Because it was an infant on a ventilator.” But that would’ve been too easy, right?

Work: Yeah, exactly. There’s a lot of issues with this. First off, one of the best things about No Surprises Act is it’s supposed to take patients out of this. It’s supposed to make it so health plans and providers deal with all these negotiations before it even goes to a patient. But because of how this was handled, instead, Amari’s family is having to do all these negotiations. They’re the ones who are writing letters, using his medical records, to Cigna, and doing multiple appeals.

Rovner: And so far, has there been any progress or is the bill still outstanding?

Work: It’s still outstanding. His mother, Sara, has done two internal appeals. So that means she applied to have the bill changed within Cigna. They denied her both times. Right now she’s working on an external appeal, where an outside provider helps evaluate, and she’s still waiting to hear back on that.

Rovner: So what’s the takeaway here? I mean, obviously you take your critically ill child to a hospital, and they say he has to go, he needs a higher level of care, and recommends an air ambulance. Are you supposed to say, “Wait, I have to call my insurer first to make sure they’re not going to deem this medically unnecessary?”

Work: Yeah, that’s what’s so frustrating because obviously if any of us were in that situation, we would’ve done the same thing. If our baby was sick, we would do the emergency air ambulance, or what we would do what the doctors told us to do. I think what I’ve been hearing from people is that, first off, hospitals should become better acquainted with what plans cover. Of course, we can only hope. But the hospital, for example, should have checked which air-ambulance providers are covered by Cigna before they made the call, because the one they did call was out-of-network for Amari’s family. As patients, what you can really do is you just need to advocate for yourself. It’s easy to be intimidated, but there are lots of times that hospitals just get the medical bill wrong or insurance companies. So do what Sara is doing and appeal. If internal appeals don’t work, go push for that external appeal as well.

Rovner: Yes, these days it helps to know your rights and to try to exercise them when you have them. Molly Work, thank you so much.

Work: Thank you so much, Julie.

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. Rachel, Rachel Zhang. Why don’t you go first this week? Yep. We have both Rachels.

Cohrs Zhang: Yes. Confusing. So I chose a story in KFF Health News actually, and the headline is “Ten Doctors on FDA Panel Reviewing Abbott Heart Device Had Financial Ties With Company.” And I think this was just a really illuminating explanation of some of the loopholes in conflict-of-interest disclosures with FDA advisory committees. There’s a lot of controversy over what role these committees should play, when they should meet. But we’re seeing them play some very high-profile roles in drug approvals as well. But we have a medical device reporter on our team, and we just think it’s such an important coverage area as we’re looking at the money that the medical device industry spends. And I mean, you’re looking at some of these advisory board members who’ve received, on Open Payments, $200,000 from this company, and they’re not disclosing it because it’s not directly related to this individual device.

And I think it’s fair to say that some of them argued, “It was for a clinical study. The university got the money. I wasn’t spending it on a fancy car or something.” But nonetheless, I think there’s a good argument in this piece for some more stringent requirements for conflict of interest, especially if this data is publicly available.

Rovner: Yes, I was kind of taken this week about how very many good stories there were about investigations into conflicts of interest. Speaking of which, Rachel, other Rachel, why don’t you go next?

Roubein: My extra credit this week is titled “As Obesity Rises, Big Food and Dietitians Push ‘Anti-Diet’ Advice” and it’s a joint investigation by The Washington Post and The Examination, which is a new nonprofit newsroom that’s specializing in global health. And I thought it was a really fascinating window into the food industry and its practices at a time when the FDA and its commissioner wants to crack down, make front-of-package labeling more prevalent. And so basically the story dives into this anti-diet movement, which began as an effort to combat weight stigma and unhealthy obsession with thinness. And the movement has now become kind of a behemoth on social media, and basically food marketers are kind of trying to cash in here. The story kind of focused on one company in particular, General Mills, and its cereal, and the investigation found that the company launched a multipronged campaign to capitalize on the anti-diet movement and giveaways to registered dietitians who promote the cereals online. And I just thought it was kind of a fascinating exploration of all of these dynamics.

Rovner: Yes. Good journalism at work. Alice.

Ollstein: Yeah, I have a story from the Texas Tribune [“How Texas Teens Lost the One Program That Allowed Birth Control Without Parental Consent“] by Eleanor Klibanoff about the impact of the court ruling that said that Title X federal family planning clinics that all across the country have a policy of dispensing contraception, prescribing contraception to teens, whether or not they have parental consent, and doing that in a … advancing privacy and protecting them in that way. There was just a recent court ruling that said, just in Texas, the state’s parental consent laws override that. And they found that at a lot of these clinics, instances of teens coming in and seeking contraception have really fallen off. These are teens, the story documents, who don’t feel comfortable going to their parents. There’s instances of parents even getting violent with their kids when they find out about this. And so it really shows the effect of this, and this is something we should be continuing to track because it went to the 5th Circuit and it could go to the Supreme Court. We don’t know yet.

Rovner: Yeah, we talked about this case a couple of weeks ago. It was another of those cases that was very much aimed at a particular judge that they were confident would rule in their favor, who indeed did rule in their favor.

All right, well, my extra credit this week is not an investigation, it’s just a story I really liked from Stat News from Rachel’s colleague Sarah Owermohle, and it’s called “Your Dog Is Probably on Prozac. Experts Say That Says More About the American Mental Health Crisis Than Pets.” And full disclosure, that is one of my dogs in the background messing with a bone. My dogs are not on Prozac, but I am, and we are all three the better for it. It’s a serious story, though, about how our mental health impacts that of our pets, not just vice versa, and about how so few new medicines there are for anxiety and depression. And as an officer of a dog training club, I will say that it’s more than humans’ projections. We are definitely seeing more dogs with behavioral issues than at any time that I can remember, and I’ve owned dogs all my life.

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. You can still find me mostly at X. Alice, where are you these days?

Ollstein: I’m at @AliceOllstein on X, and @alicemiranda on Bluesky.

Rovner: Rachel Zhang?

Cohrs Zhang: I’m at @rachelcohrs on X and also spending more time on LinkedIn these days. 

Rovner: Rachel Roubein?

Roubein: @rachel_roubein on X.

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

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10 Apr 2024

Covering the American health care system means we tell some scary stories. This episode of “An Arm and a Leg” sounds like a real horror movie. 

It uses one of Hollywood’s favorite tropes: machines taking over. And the machines belong to the private health insurance company UnitedHealth Group. 

Host Dan Weissmann talks to Stat News reporter Bob Herman about his investigation into Medicare Advantage plans that use an algorithm to make decisions about patient care. The algorithm is owned by a subsidiary of UnitedHealth Group.

Herman tells Weissmann that some of UnitedHealth’s own employees say the algorithm creates a “moral crisis” in which care is unfairly denied.

Scary stuff! Such reporting even has caught the eye of powerful people in government, putting Medicare Advantage plans under scrutiny.

Dan Weissmann

@danweissmann

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

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Click to open the Transcript

Transcript: Son of Medicare: Attack of the Machines

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

Dan: Hey there–

So this is kind of a horror story. But it’s not quite the kind of story it might sound like at first.

Because at first, it might sound like a horror story about machines taking over, making all the decisions– and making terrible, horrifying choices. Very age-of-Artificial Intelligence.

But this is really a story about decisions made by people. For money.

It’s also kind of a twofer sequel– like those movies that pit two characters from earlier stories against each other. Like Godzilla vs King Kong, or Alien vs Predator.

Although in this case, I’ve gotta admit, the two monsters are not necessarily fighting each other.

Let’s get reacquainted with them. 

On one side, coming back from our very last episode, we’ve got Medicare Advantage: This is the version of Medicare that’s run by private insurance companies. 

It’s got a bright and appealing side, compared to the traditional Medicare program run by the federal government, because: It can cost a lot less, month to month — saving people money on premiums. And it often comes with extra benefits, like dental coverage, which traditional Medicare doesn’t offer. [I know.]

But Medicare Advantage can have a dark side, which is basically: Well, you end up dealing with private insurance companies for the rest of your life. You need something — a test, a procedure, whatever — they might decide not to cover it.

Which can be scary. 

Our other returning monster — am I really calling them a monster? — well, last time we talked about them, in 2023, we had an expert calling them a behemoth. That’s United HealthGroup. You might remember, they’re not only one of the biggest insurance companies 

— and maybe not-coincidentally the very biggest provider of Medicare Advantage plans —

they’ve also got a whole other business– under the umbrella name Optum. And Optum has spent the last bunch of years buying up a gazillion other health care companies of every kind. 

That includes medical practices — they employ more doctors than anyone else, by a huge margin. It includes surgery centers, and home-health companies, and every kind of middleman company you can imagine that works behind the scenes — and have their hands in a huge percentage of doctor bills and pharmacy visits. 

A few years ago, United bought a company called NaviHealth, which provides services to insurance companies that run Medicare Advantage plans. 

NaviHealth’s job is to decide how long someone needs to stay in a nursing home, like if you’re discharged from a hospital after surgery, but you’re not ready to go home yet.

And the horror story– the stories, as dug up by reporters — starts after United bought NaviHealth.

And according to their reports, it involves people getting kicked out of those nursing homes who aren’t ready to go home. 

People getting sent home who can’t walk up the stairs in their house. Who can’t walk at all. Who are on feeding tubes. People who NaviHealth’s own employees are saying, “Wait. This person isn’t ready to go home.”

But their new bosses have told them: You’re not really making these decisions anymore. 

This is where machines do enter the picture.

NaviHealth’s distinctive offering has always been its proprietary algorithm– an algorithm that makes predictions about how long any given patient might need to stay. 

Before United bought the company, that algorithm was used as a guide, a first-guess. Humans weighed in with their own judgment about what patients needed.

After United bought the company, people inside have told reporters, that changed: The new owners basically told their employees, If the algorithm says someone can go home after x days, that’s when we’re cutting them off.

 Like pretty much any horror movie, this story’s got people running around trying to tell everyone: HEY, WATCH OUT! THERE’S SOMETHING BIG AND DANGEROUS HAPPENING HERE.

And in this case, they’ve actually gotten the attention of some people who might have the power to do something about it. Now, what those people will do? We don’t know yet. 

And, by the way: Yes, I said at the end of our last episode that we’d be talking about Medicaid this time around. That’s coming! But for now, strap in for this one. 

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

So. I said that, like every horror movie, this one has people who are seeing what’s going on and are trying to warn everybody?

Like those movies, we’re gonna follow one of those people, watch them discover the problem, see how deep it goes, and start ringing alarm bells. Let’s meet our guy.

Bob Herman: My name is Bob Herman. I’m a reporter at STAT News

Dan: Stat is an amazing medical news publication. Bob covers the business of medicine there. Bob started working on this story in November 2022, after talking to a source who runs nursing homes. Bob’s source was complaining about Medicare Advantage. 

Bob Herman: There were a lot of payment denials. They just weren’t able to get paid. And just offhandedly, the source mentioned like, um, you know, and they’re attributing everything to this algorithm. This algorithm said, You know, only 17 days for our patients and then time’s up and I went running to Casey Ross 

Dan: Casey is a reporter at Stat who focuses on tech and AI in healthcare. Bob said, hey, what do you think of this? Wanna team up?

Bob Herman: And he was hooked.

Dan: They started talking to people who worked at nursing homes, talking to experts, and talking to families. And it was clear: They were onto something. 

Bob Herman: It took so many families by surprise to be like, what do you mean we’re going home? The, you know, my husband, my wife, my grandma, my grandpa, they can’t go to the bathroom on their own. Like, what do you? It was just, it was so confusing to people. It seemed like such a, a cold calculation,​

Dan: One person they ended up talking with was Gloria Bent. Her husband Gary was sent to a nursing home for rehab after brain surgery for cancer. He was weak. He couldn’t walk. And he had something called “left neglect”: His brain didn’t register that there was a left side of his body. Here’s Gloria testifying before a Senate committee about how — when Gary arrived at the nursing home — the first thing he got was a discharge date. That is…

Gloria Bent: Before the staff of the facility could even evaluate my husband or develop a plan of care, I was contacted by someone who identified themselves as my Navi Health Care Coordinator

Dan: Gloria says when she told the nursing home staff she’d heard from NaviHealth, they groaned. And told her what to expect. 

Gloria Bent: I was told that I had just entered a battlefield, that I could expect a series of notices of denial of Medicare payment accompanied by a discharge date that would be two days after I got that notice.

Dan: Yeah, they said she’d get two days notice. Gloria says the nursing home staff told her she’d have 24 hours to appeal each of those, but even if she won, the denials would keep coming. In fact, they said,

Gloria Bent: If we won a couple of appeals, then we could expect that the frequency with which these denials were going to come would increase.

Dan: All of which happened. NaviHealth started issuing denials July 15, 2022, after Gary had been at the home for a month.

Gloria appealed. She told senators what the doctor who evaluated the appeal found: Gary couldn’t  walk. He couldn’t even move — like from bed to a chair — without help from two people.. That reviewer took Gloria’s side.

Her husband’s next denial came a week after the first. Gloria won that appeal too. She says the reviewer noted that Gary needed maximum assistance with activities of daily living. 

The third denial came four days later, and this time Gloria lost. 

Gary came home in an ambulance: As Gloria testified, he couldn’t get into or out of a car without assistance from someone with special training. 

And when he got into the ambulance, he had a fever. The next morning, he wound up in another ambulance — headed to a hospital with meningitis. He lost a lot of the functioning he’d picked up at the nursing home. 

He died at home a few months later. When Gloria testified in the Senate, all of it was still fresh. She told them that as awful as Gary’s illness and decline had been, the fights with insurance were an added trauma.

Gloria Bent: This should not be happening to families and patients. It’s cruel. Our family continues to struggle with the question that I hear you asking today. Why are people who are looking at patients only on paper or through the lens of an algorithm

making decisions that deny the services judged necessary by health care providers who know their patients.

Dan: Bob Herman calls Gloria’s story heartbreaking, like so many others he’s seen. 

And his attention goes to one part of Gloria’s story beyond denial-by-algorithm. 

Because: It’s not just one denial. It’s that series of denials. You can appeal, but as Gloria testified, the denials speed up. And you have to win every single time. The company only has to win once. 

I mean, unless you’re ready to get a lawyer and take your chances in court– which, in addition to being a major undertaking, also means racking up nursing home bills and legal bills you may never get reimbursed for, while the court process plays out. 

Bob Herman: This appeal system is designed in such a way that people will give up. If you have a job, you know, even if you don’t, and you’re, and you’re also trying to take care of a family member, um, it’s a rigorous monotonous process that will chew people up and spit them out and then the people are inevitably going to give up. And I think in some ways insurers know that.

Dan: Going out on a limb to say: I think so too. So Bob and Casey’s first story on NaviHealth came out in March of 2023. They were the characters in the movie who go, “HEY, I THINK THERE’S SOMETHING REALLY BAD HAPPENING HERE.”

And people started paying attention. Like the U.S. Senate. which held that hearing where Gloria Bent told her story. 

And like the federal agency that runs Medicare — the Centers for Medicare and Medicaid Services, CMS. 

CMS finalized a rule that told insurers: You can’t deny care to people just from using an algorithm. 

And something else happened too: Bob and Casey started suddenly getting a lot MORE information. 

Bob Herman: We received so many responses from people and it just opened the floodgates for former employees, just patients and family members, just everyone across the board.

Dan: And not just former employees. Current employees. And what they learned was: There was absolutely a strategy at work in how this algorithm was being used. It was strategy some people on the inside didn’t feel good about. 

And this strategy got developed after United HealthGroup — and its subsidiary, Optum– bought NaviHealth in 2020. And here’s what NaviHealth employees started telling Casey and Bob about that strategy.

Bob Herman: For some of us, it’s creating this moral crisis. Like we know that we are having to listen to an algorithm to essentially kick someone out of a nursing home, even though we know that they can barely walk 20 feet.

Dan: What Bob and Casey learned from insiders– and how it connects to United’s role as a health care behemoth– that’s next.

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering healthcare in America. Their reporters do amazing work, and I’m honored to work with them. We’ll have a little more about KFF Health News at the end of this episode.

So, NaviHealth — the company with the algorithm — got started in 2015.. And the idea behind it was to use data to get people home faster from nursing homes if they didn’t actually need to be there. 

Because there was a lot of evidence that some people were being kept longer than they needed. 

Bob Herman: There is some validity to the idea that there’s, there’s wasteful care in Medicare, like, you know, there’s been cases in the past proving that people stay in a nursing home for way longer than is necessary. And obviously there’s financial incentives for nursing homes to keep people as long as possible. 

Dan: Traditional Medicare does have limits on nursing home care — but if you need “post-acute care” — help getting back on your feet after leaving a hospital traditional Medicare pays in full for 20 days– pretty much no questions asked. One of the selling points of Medicare Advantage — like selling points to policy nerds and politicians — was that it could cut waste, by asking those kinds of questions. NaviHealth and its algorithm were designed to help Medicare Advantage plans ask those questions in a smart way. 

Bob Herman: There were… a lot of believers within NaviHealth that were like, okay, I think we’re doing the right thing. We’re trying to make sure people get home sooner because who doesn’t want to be at home.  

Dan: And as those employees told Bob and Casey: Before United and Optum came in, the algorithm had been there as a guide — a kind of first guess — but not the final word. 

NaviHealth has staff people who interact directly with patients. And back in the day, the pre-United day, Bob and Casey learned that those staff could make their own judgments. 

Which made sense, because the algorithm doesn’t know everything about any individual case. It’s just making predictions based on the data it has.

Bob Herman: And there was just, just this noticeable change after United and OptiMentor that it felt more rigid. There’s no more variation. 

Dan: If the algorithm says you go, you are pretty much going.

Bob Herman: United has said, no, that’s not the case, but obviously these documents and other communications that we’ve gotten kind of say otherwise.

Dan: Because these employees weren’t just talking. They were sharing. Internal memos. Emails. Training materials. All making clear: The company wanted people shipped out on the algorithm’s timetable. 

Bob Herman: Documents came in showing that like this was a pretty explicit strategy. You know, UnitedHealth was telling its employees. Listen, we have this algorithm. We think it’s really good. So when it tells you how many, how many days someone should be in a nursing home, stick to it.

Dan: Stick to it or maybe be fired. Bob and Casey got documents — employee performance goals– saying: How close you stick to the algorithm’s recommendations? That’s part of how we’re evaluating your job performance. 

Bob Herman: It’s okay. Algorithm said 17 days, you better not really go outside of that because your job is on the line. 

Dan: Here’s how closely people were expected to stick to it. In 2022, employee performance goals shared with STAT showed that workers were expected to keep actual time in nursing homes to within three percent of what the algorithm said it should be. Across the board.

So, say you had 10 patients, and the algorithm said they each should get 10 days. That’s 100 days. Your job was to make sure that the total actual days for those patients didn’t go past 103 days.

Then, in 2023, the expectations got more stringent: Stay within one percent of the algorithm’s predictions. 10 patients, the algorithm says 100 days total? Don’t let it get past a hundred and one. 

Bob Herman: Like that is, almost nothing. Like what, what, your hands are tied. If you’re that employee, what are you going to do? Are you going to get fired? Are you going to do what you’re told?

Dan: And one person who ended up talking, to did get fired. 

Bob Herman: Correct. Yes. Uh, Amber Lynch did get fired And what she said was what we had also heard just more broadly was it, it created this internal conflict, like, Oh my God, what I’m doing doesn’t feel right. 

Dan: Amber Lynch was a case manager. She told Bob and Casey about onepatient who couldn’t climb the stairs in his home after knee surgery. But the algorithm said he was ready. Amber’s supervisor said, “Have you asked the nursing home staff if they’ve tried to teach him butt bumping?” Amber grit her teeth and made the suggestion to the rehab director.

Amber Lynch: And she looked at me like I had two heads. She’s like, he is 78 years old. He’s not going to do that. He’s not safe to climb the stairs yet. He’s not doing it. We’re not going to have it butt bump the stairs.

Dan: Amber told Bob and Casey that when she got fired, it was partly for failing to hit the one percent target and partly for being late with paperwork– which she told Bob and Casey she fell behind because her caseload was so heavy.

She wasn’t the only one with that complaint. 

Bob and Casey’s story shows another NaviHealth case manager– not named in the story because they’re still on the job — in their home office, struggling to keep up. 

That week, they were supposed to work with 27 patients and their families. Gather documents, hold meetings. Another week, shortly before, they’d had 40 patients. 

“Do you think I was able to process everything correctly and call everyone correctly the way I was supposed to?” the case manager asked. “No. It’s impossible. No one can be that fast and that effective and capture all of the information that’s needed.”

Bob and Casey watched this case manager fill out a digital form, feeding the algorithm the information it asked for on a man in his 80s with heart failure, kidney disease, diabetes and trouble swallowing, who was recovering from a broken shoulder. 

A few minutes later, the computer spat out a number: 17 days. 

The case manager didn’t have a lot of time or leeway to argue, but they were skeptical that the algorithm could get that number exactly right based on only the data it had. 

And what data is the algorithm working with? What’s it comparing the data on any given patient TO? Bob Herman says that’s a big question.

Bob Herman: It’s something that for sure, like Casey and I, it’s been bothering us. Like, what, how is this whole system? Like, what is it based on? And we were never really given straight answers on that. NaviHealth and Optum and United have said it’s based on millions of patient records over time. The sources of that, it’s, it’s a little unclear, where all that’s coming from. 

Dan: Bob and Casey talked with an expert named Ziad Obermeyer, a professor at the University of California Berkeley School of Public Health, who is not anti-algorithm. He actually builds algorithmic tools for decision making in public health. 

AND he’s done research showing that some widely-used algorithms just scale up and automate things like racial bias.

He told Bob and Casey: Using an algorithm based on how long other, earlier patients have stayed in a nursing home — that’s not a great idea.

Because people get forced out of nursing homes, in his words, “because they can’t pay or because their insurance sucks.” He said, “So the algorightm is basically learning all the inequalities of our current system.”

And leaving aside that kind of bias, it seems unlikely to Bob that any algorithm could predict exactly what every single patient will need every single time. 

No matter how much data it’s got, it’s predicting from averages.

Bob Herman: It reminds me of, like, a basketball game where let’s say someone averages 27 points per game. They don’t have 27 points every single, the game they go out there. It just varies from time to time.

Dan: But the NaviHealth algorithm doesn’t have to be right every time for United to make money using it. 

Using it to make decisions can allow United to boost profits coming and going.

Bob Herman: United health and the other insurance companies that use Navi health. Are using this technology to more or less kick people out of nursing homes before they’re ready. And that is the claims denial side where it’s like, okay, let’s save as much money as we can instead of having to pay it to a nursing home.

Dan: And that’s just one side of it. The insurance side. Claims denial. But United isn’t just in the insurance business. 

United’s Optum side is in every other part of health care. 

Including — in the years since United took over NaviHealth — home health services. The kind of services you’re likely to need when you leave a nursing home.

In 2022, Optum bought one top home health company in what one trade publication called a “monster, jaw-dropping mega-deal” — more than 5 billion dollars. In 2023, Optum made a deal to buy a second mega-provider. 

Bob and Casey’s story says NaviHealth’s shortening nursing home stays is integral to United’s strategy for these acquisitions. It does seem to open up new opportunities.

Bob Herman: You’re out of the nursing home because our algorithm said so. Now we’re going to send you to a home health agency or we’re going to send some home health aides into your home. And by the way, we own them. 

Dan: Oh, right, because: If you’re in a Medicare Advantage plan, your insurer can tell you which providers are covered. 

Bob Herman: So the real question becomes, how much is United potentially paying itself?

Dan: That is: How much might United end up taking money out of one pocket — the health insurance side — and paying itself into another pocket, Optum’s home-health services?

We don’t know the answer to how much United is paying itself in this way, or hoping to. And United has said its insurance arm doesn’t favor its in-house businesses.

But it seems like a reasonable question to ask. Actually, it’s a question the feds seem to be asking.

Optum hasn’t wrapped up its purchase of that second home-health company yet, and in February 2024, the Wall Street Journal and other outlets reported that the U.S. Department of Justice had opened an anti-trust investigation. 

And you don’t have to be in a Medicare Advantage plan run by United to get kicked out of a nursing home on an algorithm’s say-so. 

Bob Herman says NaviHealth sells its algorithm-driven services to other big insurance companies 

He says, put together, the companies that use NaviHealth cover as many as  15 million people — about half of everybody in Medicare Advantage.

Bob Herman: Odds are, if you’re in a Medicare Advantage plan, there’s a, there’s a really good shot that your coverage policies, if you get really sick and need nursing home care, for example, or any kind of post acute care, an algorithm could be at play at some point.

Dan: This is the dark side of Medicare Advantage. 

Bob Herman: Everyone loves their Medicare Advantage plan when they first sign up, right? Because it’s offering all these bells and whistles. It’s, here’s a gym membership. It’s got dental and vision, which regular Medicare doesn’t have. And it’s also just, it’s, it’s cheaper. Like, if it’s just from a financial point of view, if, if you’re a low income senior, How do you turn it down? There’s, there’s so many plans that offer like free, there’s no monthly premiums in addition to all the bells and whistles. But Nobody understands the trade offs , When you’re signing up for Medicare and Medicare Advantage, you’re on the healthier side of, of being a senior, right?

Dan: And none of us can count on staying healthy forever. When you sign up for Medicare  you’re signing up your future self — whether that’s ten or twenty or more years out. That future you, might really need good medical care. 

And at that point, as we explained in our last episode, if Medicare Advantage isn’t working for you, you may not be able to get out of it.

Bob Herman: You could potentially not fully get the care that you need. We shouldn’t assume that, that this couldn’t happen to us because it can. 

Dan: So, yeah. Kind of a horror story. But: Unlike some horror movies, when Bob and Casey started publishing their stories, they started getting people’s attention.

We mentioned the new rules from the feds and the senate hearings after Bob and Casey’s first story in March 2023

Later in the year, when Bob and Casey published their story with documents and stories from inside NaviHealth, a class-action lawsuit got filed.

Since then, CMS has said it will step up audits under its new rules. 

Bob Herman: There was a memo that CMS sent out to Medicare advantage plans that said, Hey, listen, we’re telling you again, do not deny care solely on any AI or algorithms. Like just don’t do it. 

Dan: And in February 2024, the Senate held another hearing. 

Here’s Senator Elizabeth Warren at that hearing, saying these CMS rules aren’t enough. We need stronger guardrails.

Elizabeth Warren: Until CMS can verify that AI algorithms reliably adhere to Medicare coverage standards by law, then my view on this is CMS should prohibit insurance companies from using them in their MA plans for coverage decisions. They’ve got to prove they work before they put them in place.

Dan: So people — people with at least some power– are paying some attention. 

Bob Herman: I don’t think this is necessarily going to escape. Political scrutiny for a while. 

Dan: So, basically, the story isn’t over. 

This isn’t one of those horror movies where the monster’s been safely defeated at the end, and everybody just starts cleaning up the mess. And it’s not one where the monster is just on the loose, unleashing the apocalypse. 

Because it’s not a movie. There’s no ending. There’s just all of us trying to figure out what’s going on, and what we can maybe do about it.

One last thing: I got a lot of emails after our last episode, where we laid out a lot of information about Medicare Advantage and traditional Medicare. Most of it was along the lines of, Thank you! That was really helpful! Which made me feel really good.

And we got a couple notes about things we could have done better. Especially this: We said Traditional Medicare leaves you on the hook for 20 percent of everything, without an out of pocket limit. 

Which is true — but only for Medicare Part B: Doctor visits, outpatient surgeries and tests. Which can add up, for sure.

Medicare Part A — if you’re actually hospitalized — covers most services at 100 percent, after you meet the deductible. In 2024 that’s one thousand, six hundred thirty-two dollars. 

Thanks to Clarke Lancina for pointing that out. 

There have been a bunch of other, amazing notes in my inbox recently, and I want to say: Please keep them coming. 

If you go to arm and a leg show dot com, slash, contact, whatever you type there goes straight to my inbox. You can attach stuff too: documents… voice memos. 

Please let me hear from you. That’s arm and a leg show dot com, slash contact.

I’ll catch you in a few weeks. 

Till then, take care of yourself.

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

Adam Raymonda is our audio wizard. Our music is by Dave Weiner and blue dot sessions. Extra music in this episode from Epidemic Sound.

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

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

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

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

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

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

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

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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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