An Arm and a Leg: The Hack

When Change Healthcare, a subsidiary of UnitedHealth Group, got hit by a cyberattack this winter, a big chunk of the nation’s doctors, pharmacists, hospitals, and therapists stopped getting paid. The hack also limited health providers’ ability to share medical records and other information critical to patient care.

The cyberattack revealed an often overlooked part of how health care is paid for in the United States and raised concerns for antitrust advocates about how large UnitedHealth has grown.

Host Dan Weissmann speaks with reporters Brittany Trang of Stat News and Maureen Tkacik of The American Prospect about their reporting on the hack and what it says about antitrust enforcement of health care companies.

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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Emily Pisacreta Producer Adam Raymonda Audio wizard Ellen Weiss Editor Click to open the Transcript Transcript: The Hack

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. 

Brittany Trang is a reporter at STAT News– that’s a health care news outlet. We talked with Brittany’s colleague Bob Herman in our last episode. Like Bob, she’s been covering the business of health care. 

And for Brittany, this story starts with Bob flagging a story to their team. He… 

Brittany Trang: Dropped a link in the chat that said like, hey guys, I think we should write about this, question mark, and nobody replied, 

Dan: The story was about a cyber-attack against a company called Change Healthcare. 

Brittany Trang: I was like that sounds like a startup and I was like who cares about some sort of health tech startup 

Dan: But Bob kept bringing it up. 

Brittany Trang: And I finally clicked on the link, and I was like, oh no, this is a big deal. This touches most of the American healthcare system. 

Dan: Yeah, and it’s no joke. Change Healthcare is what’s called a data clearinghouse. And it’s a big one. It’s an important part of health care’s financial plumbing. Someone had gone in and basically hijacked their computer system and said, Unless we get $22 million dollars, we’re not giving it back. So Change went offline, and a huge chunk of the country’s Pharmacists, doctors, therapists, hospitals just stopped getting paid. And Change Healthcare stayed offline for weeks and weeks. As we record this, seven weeks in, big parts of it remain offline. And here’s this other thing: Change Healthcare is not a startup. It’s been around for like 20 years. And in late 2022, Change got purchased by another company– a company that’s starting to become a real recurring character on this show: UnitedHealth Group.

You may remember: They’re the country’s biggest insurance company AND they’ve got their hands in just about every other part of health care, in a big way. For instance, they’re the very biggest employer of physicians in the country, by a huge margin. They’ve got their own bank, which– among other things– offers payday loans to doctors. And they have a huge collection of companies that do back-end services. In our last episode we heard about Navi Health— and how, under United’s ownership, insurance companies have been using NaviHealth’s algorithm to cut off care for people in nursing homes. [Boy, yeah– that was a fun story…] And as we’ve been learning: When one company like this gets so big, their problems– like this cyber-attack– become everybody’s problem. And in this case, everybody’s problem seems to create an opportunity for United. We’ll break down how THAT could possibly work, but obviously it doesn’t seem like the way a lot of us would WANT things to work.. And we’ll end up talking about what we can maybe do about it. Not “we” as in a bunch of individuals trying to tackle an opponent this big. Good luck with that. But “we” as in the “We the people” of the United States Constitution. We may already be on the case. 

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 a show that’s entertaining, empowering, and useful. 

We’ll start with an attempt to answer what you’d think would be a simple question: What does Change Healthcare do?

Here’s Brittany Trang from STAT News again. 

Brittany Trang: It’s kind of like Visa or Mastercard or something. Like, when you go to the grocery store and you pay with a credit card, you are not putting your money directly into the pockets of the grocery store. There’s a middleman in there and change is that middleman, but for a ton of different things.

Dan: Like insurance claims. Brittany says hospitals and doctors offices often don’t submit claims directly to insurance companies. They send the claim to a middleman like Change. And then Change figures out where that claim needs to go next. Like: I’m sending a bunch of mail– I put it all in one mailbox, and the post office figures out how to get it where it goes. Except of course, there’s no paper here, no envelopes, no physical packages: All those claims are basically data. Which is why a company like Change is called a data clearinghouse. And even if a given provider uses some other clearinghouse– and of course there are others– Change may still be involved. Because INSURANCE companies like Aetna also use Change as a place to COLLECT claims from providers. On that side, Change is kind of like a post-office box. But claims are just one of the types of data that Change handles. For instance… 

Brittany Trang: when you went to the pharmacy counter or when you would check in at the doctor’s office and they take your insurance information and figure out like what you’re going to pay for this visit. Both of those processes were messed up. 

Dan: Yeah, and there’s more! Prior authorizations– like when your doctor checks in advance to make sure your insurance company is OK with paying for whatever. Those all go through companies like Change. So, if change is offline, do they do your MRI, or your surgery– and just hope it doesn’t get denied when Change comes back? And once claims get approved, data for payments goes through Change too. So payments– a lot of payments– just stopped going out. Here’s Brittany Trang. 

Brittany Trang: it’s just kind of flabbergasting how big this is. This collapsed most of healthcare in some way or another. 

Dan: Overall, the numbers are wild: Change reportedly processes 1.5 trillion dollars a year in claims. Maybe a third of everything that happens in healthcare. According to the American Hospital Association, 94 percent of hospitals said they were affected. Some more than others. Not all providers use Change as their primary clearinghouse. But lots do. And for them, everything just stopped. 

Brittany Trang: I talked to one provider she’s like, Oh, I can, I can talk. I’m, here today and tomorrow before we close. And I was like, before we close for spring break. And she said, no, we have 3 and 13 cents left in our bank account. Brittany says that provider got a last minute reprieve– an emergency loan from United. There have been two or three rounds of these loans so far, plus some advance payments from Medicare. But as the outage has dragged on– it started in February, and we’re recording this seven weeks later– it’s hard to know if those are going to be enough. At the end of March, I talked with Emily Benson. She runs a therapy practice in a Minneapolis suburb. Eight clinicians, mostly treating kids. She says the practice does maybe 70 or 80 thousand dollars worth of business a month. But then in February… Emily Benson: essentially everything went dark for us. 

Dan: United publicly acknowledged the Change hack on February 21st. But Emily Benson says she didn’t actually get a heads-up until almost a week later. 

Emily Benson: a lot of alarm bells went off, that was the end of the month. And so a lot of payments came due 

Dan: Her rent. Paychecks for her colleagues, and herself. 

Emily Benson: I mean, I was in a panic. Y’know, I didn’t know where I was going to go. 

Dan: She says she usually gets two payments a week from insurance, with everything passing through Change. But it’s not just the payments from insurance. Change also provides the documents that say how much an insurance company is GOING to pay for any given claim. 

Emily Benson: That’s a critical document because that tells me what does the family owe us. And then the beneficiary is also going to get that information. So they’re not surprised by what we charge them. So now every week we’re stacking up and stacking up these amounts that the family’s going to owe us. 

Dan: By the time we talked, Emily Benson had gotten two loans from United. About 40,000 each: maybe a month’s worth of billing for her, between the two loans. 

Emily Benson: That first one was wiped out. Pretty quickly because now we’re on week five I’m working on the second, um, installment that I got from united. But, you know, that’s half gone now too. So I don’t know what the next step is. We’re nowhere near. Getting claims processing yet and so. I’m kind of panicking Yeah. 

Emily Benson: it looks like the terms are within 45 days. You have to pay back that temporary loan. How am I going to do that if I don’t have claims coming? 

Dan: God. 

Emily Benson: I’m still panicking. 

Dan: I’ll bet. Oh my God. You’re very, you’re very calm for somebody in this situation. 

Emily Benson: Well, you know, I’ve had a lot of therapy of my own. That’s how you become a therapist. So panicking doesn’t help anyone. 

Dan: I guess that’s, I’ll take that under advisement. 

Dan: So, to pay back those loans– which are supposed to be repaid within 45 days– Emily Benson is gonna have to start getting paid again. As we spoke, she’d had been living without systems for filing claims and getting paid for five weeks. And even when those systems get moving again, she’s not gonna see all that money right away.

Emily Benson: Imagine the backlog and the clog. Five weeks worth of insurance claims I mean, we’re looking at a major traffic jam.

Dan: Oh myGod.Andif everybody were to work double time for the next five weeks, then it would be 10 weeks. But people can’t really work double time. 

Emily Benson: When you say that out loud, 

Dan: Sorry. 

Emily Benson: I don’t feel as grounded, 

Dan: I’m so sorry. 

Emily Benson: but, but, but it’s probably realistic. 

Dan: Other news outlets are talking to providers like Emily Benson all over the country. We’re recording this in mid-April. United hasn’t responded to our questions on this story, but their website says “We’re determined to make this right.” It says they’ve put out 4 point 7 billion dollars in emergency loans to providers so far. And it says that for the vast majority of Change Healthcare’s services, a restoration date is “still pending.” We have no idea what’s going to happen. What it’ll mean for our doctors, our therapists, our local hospitals. And look, there are elements of this story that go beyond health care. How many of us have personal health information– maybe financial information– that got seized by who the heck knows who in this? And yes, United’s getting some heat. They got a list of pointed questions from U.S. Representative Jamie Raskin. Their CEO is supposed to testify in a Senate hearing at the end of April. But as we’ll get into in a minute, this disaster– United’s disaster– could turn out to have a silver lining– for United: An opportunity to keep on growing. And that opportunity arises precisely because they’re so big, and doing so much business in so many parts of the medical-industrial complex. Which doesn’t sound great. It raises questions about the, uh, potential downsides for a lot of people, when individual companies get this freaking big. And it raises questions about what we can maybe do about it. And the answer is: Maybe more than we think. That’s all coming right up. 

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health care in America. Their reporters do amazing work, and we’re honored to be in cahoots with them. So, as we’ve seen, a company like United is so big that their problems become everybody’s problem. And at least in one case that I’ve seen so far, everybody’s problem can become United’s opportunity. That’s what happened in Oregon, and a reporter from Washington, DC, was in a position to make it a national story. 

Maureen Tkacik: My name is Maureen Tkacik, but you can call me Mo and I am the Investigations Editor at the American Prospect, and a Senior Fellow at the American Economic Liberties Project. 

Dan: The Prospect is a politically-progressive news magazine, and the Economic Liberties Project is a non-profit that pushes an anti-monopoly agenda. A lot of Mo’s reporting looks at how financial behemoths are looking like monopolists– especially in health care. So… 

Maureen Tkacik: have come to know United Healthcare, pretty well, over past, year or so, 

Dan: Looking at, for instance, how they gobble up medical practices. And as we mentioned, that kind of gobbling has made United the biggest employer of physicians in the country– by huge margins– in just the last few years. About one doc in ten now works for them, as employees or “affiliates.” As we’ve reported before, big players– like United, like big hospital systems, and like private equity groups– have been gobbling up medical practices for years. And: that kind of consolidation often leads to us paying more– and often for lousier healthcare. Moe Tkacik has been reporting on that kind of gobbling– and recently, she’d been looking at how the state of Oregon had been trying to slow it down. Then, in January 2024, a good-size medical group in Corvallis, Oregon said they were ready for United to gobble them up. The group is called the Corvallis Clinic, and it’s got more than a hundred docs. But United and the Clinic would have to go through a whole process to get approval from state regulators. That process includes: regulators asking the public for comments on the transaction. And in this case… 

Maureen Tkacik: they were. inundated with comments. 

Dan: Like 378 of them in just a few weeks. And the comments were overwhelmingly AGAINST the sale. In February, the regulators sent United and Corvallis a 5-page list of conditions under which they might approve a deal. A source of Moe’s sent me the document, which he got through a public-records request. The conditions are like, to not reduce service levels in the community for at least 10 years. To keep accepting non-United insurance. And to submit to a lot of monitoring. Then, as negotiations were starting, Change Healthcare went offline. And in early March, Moe got a tip: The clinic and United were gonna make an end run around this process. She talked with an anonymous insider at the clinic. Who told her: It turns out that all of the clinic’s billing had been connected to Change. 

Maureen Tkacik: So we’re talking about just a calamitous cash crunch. Their revenue came to a standstill 

Dan: And by the time Moe’s insider source learned what was up– this had been going on for two weeks. 

Maureen Tkacik: this source said that , Thursday, they all had a meeting and they were not sure they were going to be able to open their doors the following Monday. 

Dan: That was Thursday March 7. The next day, March 8th, lawyers for Corvallis Clinic filed an application for an emergency exemption from the normal review process. A week later, they got that exemption. And this time regulators had not demanded any conditions. As Moe’s story laid out, United’s problem– the Change Healthcare hack– became everybody’s problem, including Corvallis. And their problem seemed to have become United’s opportunity. To gobble up the practice without having to agree to any conditions from pesky regulators. And a postscript to the Corvallis Clinic story: Shortly after regulators approved that deal, United sent notices to thousands of patients at another clinic it had taken over in nearby Eugene, saying basically: We don’t have a doctor for you anymore. Goodbye and good luck. News reports said that clinic had lost more than 30 doctors since United took over. And among the public comments urging regulators to kibosh the Corvallis clinic, a bunch of people cited lousy experiences at that Eugene clinic under United’s ownership. This is the kind of thing that Moe Tkacik and her colleagues at the American Economic Liberties Project– and what’s become a kind of anti-monopoly movement– want to change. And here’s where this episode becomes maybe just a little less of a horror story, and maybe a little more of an action movie. Because the anti-monopoly movement has gotten a big backer in the last three years: The Biden Administration. In 2017, a woman named Lina Khan made a name for herself in legal circles when she published a paper arguing that Amazon had become the kind of super-dominant company that antitrust laws were designed to constrain. Lina Khan was a law student when she published that paper. In 2021, Joe Biden appointed her to lead the Federal Trade Commission. The FTC and the Department of Justice split the job of antitrust enforcement, and they’ve both become super-aggressive. They’ve filed big lawsuits against Google, Amazon, and– in March of this year– Apple. And gotten a fair amount of attention. As we were writing up this episode, Jon Stewart interviewed Lina Khan on “The Daily Show.” And here’s how she described her approach in that conversation. 

LK: We’ve really focused on how companies are behaving. Are they behaving in ways that suggest they can harm their customers, harm their suppliers, harm their workers, and get away with it? And that type of too big to care type approach is really what ends up signaling that a company has monopoly power because they can start mistreating you, but they know you’re stuck. 

Dan: Earlier this year, the Wall Street Journal reported that Lina Khan’s allies– antitrust folks at the Department of Justice are investigating United. Neither the Justice Department nor United has commented on that report. Meaning: Nobody’s denied it. So far, some of the Biden administration’s antitrust lawsuits have pan out, and some haven’t. Actually, in 2021, the Justice Department sued to prevent UnitedHealth Group from buying Change Healthcare. That one, they lost. But when the sued to block Penguin Random House from buying another giant publisher, Simon and Schuster, they won. And as Lina Khan told Jon Stewart, she and her colleagues aren’t just suing to prevent mergers. They sued to get infamous Pharma Bro Martin Skhreli banned for life from the pharma trade. And they won. And they’re looking at other ways big companies, especially in health care, screw people. 

LK: Just to give you one example, inhalers. They’ve been around for decades, but they still cost hundreds of dollars. So our staff took a close look and we’ve realized the, some of the patents that had been listed for these inhalers were improper. There were bogus. And so we sent hundreds of warning letters around these patents. And in the last few weeks, we’ve seen companies deal list these patents and three out of the four major manufacturers have now said, Within a couple of months, they’re going to cap how much Americans pay to just 35. 

Dan: I think we should start paying a lot more attention to what Lina Khan and her colleagues are up to– and what their chances are. I’ve started reading up, and getting in touch with folks who are in this fight, and who are watching it closely. Because this is looking like the kind of action movie I kind of like. Meanwhile, I’m posting a link to Jon Stewart’s interview with Lina Khan wherever you’re listening to this. I’ll have a few other links for you in our newsletter– you can sign up for that at arm and a leg show dot com, slash, newsletter. And 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. Big thanks this time to the novelist, journalist and activist Cory Doctorow, who has been writing about the antitrust revival for years, breaking down complex, technical stories in clear, accessible ways. Thanks to professor Spencer Waller from the Loyola University Chicago law school for talking about antitrust with me. And thanks to Dr. John Santa in Oregon– for sharing material he got via a public-records request to the state, and for his observations. 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 Armand 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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Una prueba genética podría salvar la vida de cientos de pacientes en quimioterapia

Una mañana de enero de 2021, Carol Rosen recibió un tratamiento estándar para el cáncer de mama metastásico. Murió después de tres semanas de sufrimiento, con un dolor insoportable causado por la misma droga que debería haber ayudado a prolongar su vida.

Rosen, maestra jubilada de 70 años, pasó sus últimos días angustiada, sufriendo de diarrea intensa, náuseas y dolorosas llagas en la boca que le impedían comer, beber y, finalmente, hablar. La piel se le desprendía del cuerpo. Sus riñones y su hígado habían dejado de funcionar. “Tu cuerpo arde desde”, dijo la hija de Rosen, Lindsay Murray, de Andover, Massachusetts.

Rosen fue una de los más de 275,000 pacientes con cáncer en los Estados Unidos a quienes cada año se les administra fluorouracilo, también conocido como 5-FU, o que toman un medicamento casi idéntico en forma de pastilla llamado capecitabina, como ella lo hacía.

Estos tipos de quimioterapia comunes son difíciles de tolerar en general, pero para los pacientes que tienen deficiencia de una enzima que metaboliza la droga, puede ser una tortura o causar la muerte.

La toxicidad por fluorouracilo ocurre porque los medicamentos permanecen en el cuerpo durante horas en vez de ser metabolizados y excretados rápidamente.

Se estima que las drogas matan a 1 de cada 1,000 pacientes que las toman —cientos de personas cada año— y hacen que 1 de cada 50 pacientes se enfermen gravemente o deban ser internados. Los médicos pueden realizar pruebas para detectar la deficiencia y obtener resultados en una semana, y así determinar si cambiar de medicamento o reducir la dosis para los pacientes que tienen la variante genética asociada con el riesgo.

Sin embargo, una encuesta reciente encontró que sólo el 3% de los oncólogos piden las pruebas de forma habitual antes de administrar 5-FU o capecitabina a sus pacientes. Esto se debe a que las pautas de tratamiento del cáncer más aceptadas en el país, emitidas por la Red Nacional Integral del Cáncer, no recomiendan las pruebas de manera preventiva.

La Administración de Alimentos y Medicamentos (FDA) agregó nuevas advertencias sobre los riesgos letales del 5-FU a la etiqueta del medicamento el 21 de marzo pasado, después de consultas de KFF Health News sobre la política de la agencia con respecto a la droga. Sin embargo, no exigió que los médicos realicen la prueba antes de recetar tratamientos de quimioterapia.

La agencia, cuyo plan para reforzar la supervisión de las pruebas de laboratorio fue abordado en una audiencia en la Cámara de Representantes, también el 21 de marzo, dijo que no podía recomendar las pruebas de toxicidad del 5-FU porque nunca las había revisado.

Pero actualmente la FDA no revisa la mayoría de las pruebas de diagnóstico, dijo Daniel Hertz, profesor asociado de la Escuela de Farmacia de la Universidad de Michigan. Durante años, Hertz, junto con otros médicos y farmacéuticos, ha solicitado a la FDA que agregue la máxima advertencia (llamada “caja negra”) a la etiqueta del medicamento, para instar a los profesionales que lo recetan a realizar las pruebas para detectar la deficiencia de la enzima.

“La FDA tiene la responsabilidad de asegurar que los medicamentos se utilicen de forma segura y eficaz”, dijo. La falta de esta advertencia, afirmó, “es una abdicación de su responsabilidad”.

Las nuevas advertencias son “un pequeño paso adelante, pero no el cambio radical que necesitamos”, afirmó.

Europa lidera en seguridad

Las autoridades farmacéuticas británicas y de la Unión Europea recomiendan la prueba desde 2020. En Estados Unidos, un número pequeño pero creciente de hospitales, grupos profesionales y defensores de la salud, incluyendo la Sociedad Americana del Cáncer, también recomiendan las pruebas de forma rutinaria.

La mayoría de las aseguradoras estadounidenses, tanto públicas como privadas, cubren las pruebas, que Medicare reembolsa por $175, aunque pueden costar más dependiendo de cuántas variantes detectan.

En sus últimas directrices sobre el cáncer de colon, el panel de la Red Nacional Integral del Cáncer señaló que no todas las personas que portan la variante genética se enferman cuando toman el medicamento, y que recetar dosis más bajas para estos pacientes podría privarlos de curarse o de tener una remisión del cáncer. Muchos médicos del panel, incluyendo Wells Messersmith, oncólogo de la Universidad de Colorado, dijeron que nunca han registrado una muerte por 5-FU.

En los hospitales europeos, se empieza con la mitad o un cuarto de la dosis de 5-FU para los pacientes cuyas pruebas muestran que metabolizan la droga lentamente. Luego, se aumenta la dosis si el paciente responde bien al medicamento. Los defensores de este abordaje dicen que las autoridades estadounidenses de oncología están demorando el tratamiento innecesariamente, y perjudicando a las personas.

“Creo que se trata de una terquedad de parte de las personas que participan en estos paneles”, dijo Gabriel Brooks, oncólogo e investigador del Dartmouth Cancer Center. “Piensan: ‘Somos oncólogos, los medicamentos son nuestras herramientas, no queremos buscar razones para no usar nuestras herramientas’”.

Los oncólogos están acostumbrados a la toxicidad de la quimioterapia y tienden a tener una actitud de “sin dolor no hay recompensa”, dijo. El 5-FU se utiliza desde la década de 1950.

Por otro lado, “cualquiera que haya perdido un paciente de esta manera va a querer someter a todos a las pruebas”, dijo Robert Diasio, de la Clínica Mayo, quien ayudó a realizar importantes estudios sobre la deficiencia genética en 1988.

Muchos oncólogos utilizan las pruebas genéticas para determinar cuál de los costosos medicamentos disponibles usar para reducir el tamaño de un tumor. Pero no siempre sucede lo mismo con las pruebas genéticas destinadas a mejorar la seguridad de los medicamentos, dijo Mark Fleury, director de políticas de Cancer Action Network, una organización defensora sin fines de lucro de la Sociedad Americana del Cáncer.

En el caso de medicamentos nuevos, cuando se trata de pruebas para determinar si son apropiados para cada paciente, “hay muchas más fuerzas alineadas para que se realicen estas pruebas”, dijo Fleury. “Pero estas fuerzas y grupos interesados no están involucrados” con una droga genérica como el 5-FU, que fue aprobada por primera vez en 1962 y cuesta aproximadamente $17 por mes.

Carol Rosen fue una de más de 1,000 pacientes tratadas con fluoropirimidina en 2021.

Su hija estaba desconsolada y furiosa después de la muerte de Rosen. “Quería demandar al hospital. Quería demandar al oncólogo”, dijo Murray. “Pero me di cuenta que eso no era lo que mi mamá hubiera querido”.

Le escribió al director de control de calidad del Dana-Farber, Joe Jacobson, para instarlo a realizar las pruebas de forma rutinaria. Jacobson respondió el mismo día, y el hospital adoptó rápidamente un sistema de pruebas que ahora cubre a más del 90% de los pacientes que podrían ser tratados con fluoropirimidina. Se detectaron alrededor de 50 pacientes con variantes de riesgo en los primeros 10 meses, dijo Jacobson.

Dana-Farber utiliza una prueba de la Clínica Mayo que detecta ocho variantes potencialmente riesgosas del gen. Los hospitales de Veterans Affairs utilizan una prueba que detecta 11 variantes, mientras que la mayoría de los demás identifican sólo cuatro variantes.

Distintas pruebas para distintas ascendencias

Cuantas más variantes detecte una prueba, mejores son las posibilidades de encontrar variantes genéticas menos comunes en poblaciones étnicamente diversas. Por ejemplo, las deficiencias más peligrosas en personas de ascendencia africana y europea, respectivamente, son causadas por distintas variantes.

Hay pruebas que pueden identificar cientos de variantes que afectan el metabolismo de la droga, pero tardan más y son más caras.

Estas son tristes realidades para Scott Kapoor, un médico de urgencias que vive cerca de Toronto cuyo hermano, Anil Kapoor, murió en febrero de 2023 de toxicidad por 5-FU.

Anil Kapoor era un conocido urólogo y cirujano, investigador, médico y un amigo divertido: a su funeral fueron cientos de personas. Su muerte a los 58 años, unas pocas semanas después que le diagnosticaran cáncer de colon en estadio 4, sorprendió y enfureció a su familia.

El sistema de salud de Ontario, donde se trató Kapoor, recién había empezado a realizar pruebas para detectar cuatro variantes genéticas, identificadas por estudios desarrollados en poblaciones principalmente europeas. Anil Kapoor y sus hermanos, hijos de inmigrantes de la India nacidos en Canadá, son portadores de una variante genética que parece estar asociada con las personas de ascendencia del sur de Asia.

Scott Kapoor apoya pruebas más extensas para detectar la mutación, ya que sólo alrededor de la mitad de los habitantes de Toronto son de ascendencia europea, y sostiene que el antídoto contra la toxicidad por fluoropirimidina, aprobado por la FDA en 2015, debería estar fácilmente disponible.

Sin embargo, este antídoto sólo funciona por unos días después del consumo del fármaco, y los síntomas definitivos suelen tardar más tiempo en aparecer.

Lo más importante, dijo, es que los pacientes estén al tanto del riesgo. “Les dices: ‘Te voy a dar un medicamento que tiene una probabilidad de 1 entre 1,000 de matarte. Puedes hacerte esta prueba’. La mayoría de los pacientes dirán: ‘Quiero hacerme esa prueba y la pagaré’, o simplemente: ‘Reduzca la dosis a la mitad’”.

Murray percibe un impulso por las pruebas obligatorias. En 2022, la Universidad de Ciencias y Salud de Oregon pagó $1 millón para resolver una demanda tras una muerte por sobredosis.

“Lo que va a romper esa barrera son las demandas y las grandes instituciones como Dana-Farber que están implementando programas y viendo cómo tienen éxito”, dijo. “Creo que los proveedores se sentirán acorralados. Van a seguir escuchando a las familias y tendrán que hacer algo al respecto”.

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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Millions Were Booted From Medicaid. The Insurers That Run It Gained Medicaid Revenue Anyway.

Private Medicaid health plans lost millions of members in the past year as pandemic protections that prohibited states from dropping anyone from the government program expired.

But despite Medicaid’s unwinding, as it’s known, at least two of the five largest publicly traded companies selling plans have continued to increase revenue from the program, according to their latest earnings reports.

“It’s a very interesting paradox,” said Andy Schneider, a research professor at Georgetown University’s McCourt School of Public Policy, of plans’ Medicaid revenue increasing despite enrollment drops.

Medicaid, the state-federal health program for low-income and disabled people, is administered by states. But most people enrolled in the program get their health care through insurers contracted by states, including UnitedHealthcare, Centene, and Molina.

The companies persuaded states to pay them more money per Medicaid enrollee under the assumption that younger and healthier people were dropping out — presumably for Obamacare coverage or employer-based health insurance, or because they didn’t see the need to get coverage — leaving behind an older and sicker population to cover, their executives have told investors.

Several of the companies reported that states have made midyear and retrospective changes in their payments to plans to account for the worsening health status of members.

In an earnings call with analysts on April 25, Molina Healthcare CEO Joe Zubretsky said 19 states increased their payment rates this year to adjust for sicker Medicaid enrollees. “States have been very responsive,” Zubretsky said. “We couldn’t be more pleased with the way our state customers have responded to having rates be commensurate with normal cost trends and trends that have been influenced by the acuity shift.”

Health plans have faced much uncertainty during the Medicaid unwinding, as states began reassessing enrollees’ eligibility and dropping those deemed no longer qualified or who lost coverage because of procedural errors. Before the unwinding, plans said they expected the overall risk profile of their members to go up because those remaining in the program would be sicker.

UnitedHealthcare, Centene, and Molina had Medicaid revenue increases ranging from 3% to 18% in 2023, according to KFF. The two other large Medicaid insurers, Elevance and CVS Health, do not break out Medicaid-specific revenue.

The Medicaid enrollment of the five companies collectively declined by about 10% from the end of March 2023 through the end of December 2023, from 44.2 million people to 39.9 million, KFF data shows.

In the first quarter of 2024, UnitedHealth’s Medicaid revenue rose to $20.5 billion, up from $18.8 billion in the same quarter of 2023.

Molina on April 24 reported nearly $7.5 billion in Medicaid revenue in the first quarter of 2024, up from $6.3 billion in the same quarter a year earlier.

On April 26, Centene reported that its Medicaid enrollment fell 18.5% to 13.3 million in the first quarter of 2024 compared with the same period a year ago. The company’s Medicaid revenue dipped 3% to $22.2 billion.

Unlike UnitedHealthcare, whose Medicaid enrollment fell to 7.7 million in March 2024 from 8.4 million a year prior, Molina’s Medicaid enrollment rose in the first quarter of 2024 to 5.1 million from 4.8 million in March 2023. Molina’s enrollment jump last year was partly a result of its having bought a Medicaid plan in Wisconsin and gained a new Medicaid contract in Iowa, the company said in its earnings news release.

Molina added 1 million members because states were prohibited from terminating Medicaid coverage during the pandemic. The company has lost 550,000 of those people during the unwinding and expects to lose an additional 50,000 by June.

About 90% of Molina Medicaid members have gone through the redetermination process, Zubretsky said.

The corporate giants also offset the enrollment losses by getting more Medicaid money from states, which they use to pass on higher payments to certain facilities or providers, Schneider said. By holding the money temporarily, the companies can count these “directed payments” as revenue.

Medicaid health plans were big winners during the pandemic after the federal government prohibited states from dropping people from the program, leading to a surge in enrollment to about 93 million Americans.

States made efforts to limit health plans’ profits by clawing back some payments above certain thresholds, said Elizabeth Hinton, an associate director at KFF.

But once the prohibition on dropping Medicaid enrollees was lifted last spring, the plans faced uncertainty. It was unclear how many people would lose coverage or when it would happen. Since the unwinding began, more than 20 million people have been dropped from the rolls.

Medicaid enrollees’ health care costs were lower during the pandemic, and some states decided to exclude pandemic-era cost data as they considered how to set payment rates for 2024. That provided yet another win for the Medicaid health plans.

Most states are expected to complete their Medicaid unwinding processes this year.

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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KFF Health News' 'What the Health?': Abortion — Again — At the Supreme Court

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:

Credits

Francis Ying Audio producer Emmarie Huetteman Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on SpotifyApple PodcastsPocket Casts, or wherever you listen to podcasts.

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Genetics Studies Have a Diversity Problem That Researchers Struggle To Fix

CHARLESTON, S.C. — When he recently walked into the dental clinic at the Medical University of South Carolina donning a bright-blue pullover with “In Our DNA SC” embroidered prominently on the front, Lee Moultrie said, two Black women stopped him to ask questions.

“It’s a walking billboard,” said Moultrie, a health care advocate who serves on the community advisory board for In Our DNA SC, a study underway at the university that aims to enroll 100,000 South Carolinians — including a representative percentage of Black people — in genetics research. The goal is to better understand how genes affect health risks such as cancer and heart disease.

Moultrie, who is Black and has participated in the research project himself, used the opportunity at the dental clinic to encourage the women to sign up and contribute their DNA. He keeps brochures about the study in his car and at the barbershop he visits weekly for this reason. It’s one way he wants to help solve a problem that has plagued the field of genetics research for decades: The data is based mostly on DNA from white people.

Project leaders in Charleston told KFF Health News in 2022 that they hoped to enroll participants who reflect the demographic diversity of South Carolina, where just under 27% of residents identify as Black or African American. To date, though, they’ve failed to hit that mark. Only about 12% of the project’s participants who provided sociodemographic data identify as Black, while an additional 5% have identified as belonging to another racial minority group.

“We’d like to be a lot more diverse,” acknowledged Daniel Judge, principal investigator for the study and a cardiovascular genetics specialist at the Medical University of South Carolina.

Lack of diversity in genetics research has real health care implications. Since the completion more than 20 years ago of the Human Genome Project, which mapped most human genes for the first time, close to 90% of genomics studies have been conducted using DNA from participants of European descent, research shows. And while human beings of all races and ancestries are more than 99% genetically identical, even small differences in genes can spell big differences in health outcomes.

“Precision medicine” is a term used to describe how genetics can improve the way diseases are diagnosed and treated by considering a person’s DNA, environment, and lifestyle. But if this emerging field of health care is based on research involving mostly white people, “it could lead to mistakes, unknowingly,” said Misa Graff, an associate professor in epidemiology at the University of North Carolina and a genetics researcher.

In fact, that’s already happening. In 2016, for example, research found that some Black patients had been misdiagnosed with a potentially fatal heart condition because they’d tested positive for a genetic variant thought to be harmful. That variant is much more common among Black Americans than white Americans, the research found, and is considered likely harmless among Black people. Misclassifications can be avoided if “even modest numbers of people from diverse populations are included in sequence databases,” the authors wrote.

The genetics research project in Charleston requires participants to complete an online consent form and submit a saliva sample, either in person at a designated lab or collection event or by mail. They are not paid to participate, but they do receive a report outlining their DNA results. Those who test positive for a genetic marker linked to cancer or high cholesterol are offered a virtual appointment with a genetics counselor free of charge.

Some research projects require more time from their volunteers, which can skew the pool of participants, Graff said, because not everyone has the luxury of free time. “We need to be even more creative in how we obtain people to help contribute to studies,” she said.

Moultrie said he recently asked project leaders to reach out to African American media outlets throughout the Palmetto State to explain how the genetics research project works and to encourage Black people to participate. He also suggested that when researchers talk to Black community leaders, such as church pastors, they ought to persuade those leaders to enroll in the study instead of simply passing the message along to their congregations.

“We have new ideas. We have ways we can do this,” Moultrie said. “We’ll get there.”

Other ongoing efforts are already improving diversity in genetics research. At the National Institutes of Health, a program called “All of Us” aims to analyze the DNA of more than 1 million people across the country to build a diverse health database. So far, that program has enrolled more than 790,000 participants. Of these, more than 560,000 have provided DNA samples and about 45% identify as being part of a racial or ethnic minority group.

“Diversity is so important,” said Karriem Watson, chief engagement officer for the All of Us research program. “When you think about groups that carry the greatest burden of disease, we know that those groups are often from minoritized populations.”

Diverse participation in All of Us hasn’t come about by accident. NIH researchers strategically partnered with community health centers, faith-based groups, and Black fraternities and sororities to recruit people who have been historically underrepresented in biomedical research.

In South Carolina, for example, the NIH works with Cooperative Health, a network of federally qualified health centers near the state capital that serve many patients who are uninsured and Black, to recruit patients for All of Us. Eric Schlueter, chief medical officer of Cooperative Health, said the partnership works because their patients trust them.

“We have a strong history of being integrated into the community. Many of our employees grew up and still live in the same communities that we serve,” Schlueter said. “That is what is part of our secret sauce.”

So far, Cooperative Health has enrolled almost 3,000 people in the research program, about 70% of whom are Black.

“Our patients are just like other patients,” Schlueter said. “They want to be able to provide an opportunity for their children and their children’s children to have better health, and they realize this is an opportunity to do that.”

Theoretically, researchers at the NIH and the Medical University of South Carolina may be trying to recruit some of the same people for their separate genetics studies, although nothing would prevent a patient from participating in both efforts.

The researchers in Charleston acknowledge they still have work to do. To date, In Our DNA SC has recruited about half of the 100,000 people it hopes for, and of those, about three-quarters have submitted DNA samples.

Caitlin Allen, a program investigator and a public health researcher at the medical university, acknowledged that some of the program’s tactics haven’t succeeded in recruiting many Black participants.

For example, some patients scheduled to see providers at the Medical University of South Carolina receive an electronic message through their patient portal before an appointment, which includes information about participating in the research project. But studies show that racial and ethnic minorities are less likely to engage with their electronic health records than white patients, Allen said.

“We see low uptake” with that strategy, she said, because many of the people researchers are trying to engage likely aren’t receiving the message.

The study involves four research coordinators trained to take DNA samples, but there’s a limit to how many people they can talk to face-to-face. “We’re not necessarily able to go into every single room,” Allen said.

That said, in-person community events seem to work well for enrolling diverse participants. In March, In Our DNA SC research coordinators collected more than 30 DNA samples at a bicentennial event in Orangeburg, South Carolina, where more than 60% of residents identify as Black. Between the first and second year of the research project, Allen said, In Our DNA SC doubled the number of these community events that research coordinators attended.

“I would love to see it ramp up even more,” she said.

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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FTC Chief Says Tech Advancements Risk Health Care Price Fixing

New technologies are making it easier for companies to fix prices and discriminate against individual consumers, the Biden administration’s top consumer watchdog said Tuesday.

Algorithms make it possible for companies to fix prices without explicitly coordinating with one another, posing a new test for regulators policing the market, said Lina Khan, chair of the Federal Trade Commission, during a media event hosted by KFF.

“I think we could be entering a somewhat novel era of pricing,” Khan told reporters.

Khan is regarded as one of the most aggressive antitrust regulators in recent U.S. history, and she has paid particular attention to the harm that technological advances can pose to consumers. Antitrust regulators at the FTC and the Justice Department set a record for merger challenges in the fiscal year that ended Sept. 30, 2022, according to Bloomberg News.

Last year, the FTC successfully blocked biotech company Illumina’s over $7 billion acquisition of cancer-screening company Grail. The FTC, Justice Department, and Health and Human Services Department launched a website on April 18, healthycompetition.gov, to make it easier for people to report suspected anticompetitive behavior in the health care industry.

The American Hospital Association, the industry’s largest trade group, has often criticized the Biden administration’s approach to antitrust enforcement. In comments in September on proposed guidance the FTC and Justice Department published for companies, the AHA said that “the guidelines reflect a fundamental hostility to mergers.”

Price fixing removes competition from the market and generally makes goods and services more expensive. The agency has argued in court filings that price fixing “is still illegal even if you are achieving it through an algorithm,” Khan said. “There’s no kind of algorithmic exemption to the antitrust laws.”

By simply using the same algorithms to set prices, companies can effectively charge the same “even if they’re not, you know, getting in a back room and kind of shaking hands and setting a price,” Khan said, using the example of residential property managers.

Khan said the commission is also scrutinizing the use of artificial intelligence and algorithms to set prices for individual consumers “based on all of this particular behavioral data about you: the websites you visited, you know, who you had lunch with, where you live.”

And as health care companies change the way they structure their businesses to maximize profits, the FTC is changing the way it analyzes behavior that could hurt consumers, Khan said.

Hiring people who can “help us look under the hood” of some inscrutable algorithms was a priority, Khan said. She said it’s already paid off in the form of legal actions “that are only possible because we had technologists on the team helping us figure out what are these algorithms doing.”

Traditionally, the FTC has policed health care by challenging local or regional hospital mergers that have the potential to reduce competition and raise prices. But consolidation in health care has evolved, Khan said.

Mergers of systems that don’t overlap geographically are increasing, she said. In addition, hospitals now often buy doctor practices, while pharmacy benefit managers start their own insurance companies or mail-order pharmacies — or vice versa — pursuing “vertical integration” that can hurt consumers, she said.

The FTC is hearing increasing complaints “about how these firms are using their monopoly power” and “exercising it in ways that’s resulting in higher prices for patients, less service, as well as worse conditions for health care workers,” Khan said.

Policing Noncompetes

Khan said she was surprised at how many health care workers responded to the commission’s recent proposal to ban “noncompete” clauses — agreements that can prevent employees from moving to new jobs. The FTC issued its final rule banning the practice on Tuesday. She said the ban was aimed at low-wage industries like fast food but that many of the comments in favor of the FTC’s plan came from health professions.

Health workers say noncompete agreements are “both personally devastating and also impeded patient care,” Khan said.

In some cases, doctors wrote that their patients “got really upset because they wanted to stick with me, but my hospital was saying I couldn’t,” Khan said. Some doctors ended up commuting long distances to prevent the rest of their families from having to move after they changed jobs, she said.

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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Biden Administration Sets Higher Staffing Mandates. Most Nursing Homes Don’t Meet Them.

The Biden administration finalized nursing home staffing rules Monday that will require thousands of them to hire more nurses and aides — while giving them years to do so.

The new rules from the Centers for Medicare & Medicaid Services are the most substantial changes to federal oversight of the nation’s roughly 15,000 nursing homes in more than three decades. But they are less stringent than what patient advocates said was needed to provide high-quality care.

Spurred by disproportionate deaths from covid-19 in long-term care facilities, the rules aim to address perennially sparse staffing that can be a root cause of missed diagnoses, severe bedsores, and frequent falls.

“For residents, this will mean more staff, which means fewer ER visits potentially, more independence,” Vice President Kamala Harris said while meeting with nursing home workers in La Crosse, Wisconsin. “For families, it’s going to mean peace of mind in terms of your loved one being taken care of.”

When the regulations are fully enacted, 4 in 5 homes will need to augment their payrolls, CMS estimated. But the new standards are likely to require slight if any improvements for many of the 1.2 million residents in facilities that are already quite close to or meet the minimum levels.

“Historically, this is a big deal, and we’re glad we have now established a floor,” Blanca Castro, California’s long-term care ombudsman, said in an interview. “From here we can go upward, recognizing there will be a lot of complaints about where we are going to get more people to fill these positions.”

The rules primarily address staffing levels for three types of nursing home workers. Registered nurses, or RNs, are the most skilled and responsible for guiding overall care and setting treatment plans. Licensed practical nurses, sometimes called licensed vocational nurses, work under the direction of RNs and perform routine medical care such as taking vital signs. Certified nursing assistants are supposed to be the most plentiful and help residents with daily activities like going to the bathroom, getting dressed, and eating.

While the industry has increased wages by 27% since February 2020, homes say they are still struggling to compete against better-paying work for nurses at hospitals and at retail shops and restaurants for aides. On average, nursing home RNs earn $40 an hour, licensed practical nurses make $31 an hour, and nursing assistants are paid $19 an hour, according to the most recent data from the Bureau of Labor Statistics.

CMS estimated the rules will ultimately cost $6 billion annually, but the plan omits any more payments from Medicare or Medicaid, the public insurers that cover most residents’ stays — meaning additional wages would have to come out of owners’ pockets or existing facility budgets.

The American Health Care Association, which represents the nursing home industry, called the regulation “an unreasonable standard” that “creates an impossible task for providers” amid a persistent worker shortage nationwide.

“This unfunded mandate doesn’t magically solve the nursing crisis,” the association’s CEO, Mark Parkinson, said in a statement. Parkinson said the industry will keep pressing Congress to overturn the regulation.

Richard Mollot, executive director of the Long Term Care Community Coalition, a New York City-based advocacy nonprofit, said “it is hard to call this a win for nursing home residents and families” given that the minimum levels were below what studies have found to be ideal.

The plan was welcomed by labor unions that represent nurses — and whom President Joe Biden is counting on for support in his reelection campaign. Service Employees International Union President Mary Kay Henry called it a “long-overdue sea change.” This political bond was underscored by the administration’s decision to have Harris announce the rule with SEIU members in Wisconsin, a swing state.

The new rules supplant the vague federal mandate that has been in place since the 1980s requiring nursing homes to have “sufficient” staffing to meet residents’ needs. In practice, inspectors rarely categorized inadequate staffing as a serious infraction resulting in possible penalties, federal records show.

Starting in two years, most homes must provide an average of at least 3.48 hours of daily care per resident. About 6 in 10 nursing homes are already operating at that level, a KFF analysis found.

The rules give homes breathing room before they must comply with more specific requirements. Within three years, most nursing homes will need to provide daily RN care of at least 0.55 hours per resident and 2.45 hours from aides.

CMS also mandated that within two years an RN must be on duty at all times in case of a patient crisis on weekends or overnight. Currently, CMS requires at least eight consecutive hours of RN presence each day and a licensed nurse of any level on duty around the clock. An inspector general report found that nearly a thousand nursing homes didn’t meet those basic requirements.

Nursing homes in rural areas will have longer to staff up. Within three years, they must meet the overall staffing numbers and the round-the-clock RN requirement. CMS’ rule said rural homes have four years to achieve the RN and nurse aide thresholds, although there was some confusion within CMS, as its press materials said rural homes would have five years.

Under the new rules, the average nursing home, which has around 100 residents, would need to have at least two RNs working each day, and at least 10 or 11 nurse aides, the administration said. Homes could meet the overall requirements through two more workers, who could be RNs, vocational nurses, or aides.

Homes can get a hardship exemption from the minimums if they are in regions with low populations of nurses or aides and demonstrate good-faith efforts to recruit.

Democrats praised the rules, though some said the administration did not go nearly far enough. Rep. Lloyd Doggett (D-Texas), the ranking member of the House Ways and Means Health Subcommittee, said the changes were “modest improvements” but that “much more is needed to ensure sufficient care and resident safety.” A Republican senator from Nebraska, Deb Fischer, said the rule would “devastate nursing homes across the country and worsen the staffing shortages we are already facing.”

Advocates for nursing home residents have been pressing CMS for years to adopt a higher standard than what it ultimately settled on. A CMS-commissioned study in 2001 found that the quality of care improved with increases of staff up to a level of 4.1 hours per resident per day — nearly a fifth higher than what CMS will require. The consultants CMS hired in preparing its new rules did not incorporate the earlier findings in their evaluation of options.

CMS said the levels it endorsed were more financially feasible for homes, but that assertion didn’t quiet the ongoing battle about how many people are willing to work in homes at current wages and how financially strained homes owners actually are.

“If states do not increase Medicaid payments to nursing homes, facilities are going to close,” said John Bowblis, an economics professor and research fellow with the Scripps Gerontology Center at Miami University. “There aren’t enough workers and there are shortages everywhere. When you have a 3% to 4% unemployment rate, where are you going to get people to work in nursing homes?”

Researchers, however, have been skeptical that all nursing homes are as broke as the industry claims or as their books show. A study published in March by the National Bureau of Economic Research estimated that 63% of profits were secretly siphoned to owners through inflated rents and other fees paid to other companies owned by the nursing homes’ investors.

Charlene Harrington, a professor emeritus at the nursing school of the University of California-San Francisco, said: “In their unchecked quest for profits, the nursing home industry has created its own problems by not paying adequate wages and benefits and setting heavy nursing workloads that cause neglect and harm to residents and create an unsatisfactory and stressful work environment.”

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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Medical Providers Still Grappling With UnitedHealth Cyberattack: ‘More Devastating Than Covid’

Two months after a cyberattack on a UnitedHealth Group subsidiary halted payments to some doctors, medical providers say they’re still grappling with the fallout, even though UnitedHealth told shareholders on Tuesday that business is largely back to normal.

“We are still desperately struggling,” said Emily Benson, a therapist in Edina, Minnesota, who runs her own practice, Beginnings & Beyond. “This was way more devastating than covid ever was.”

Change Healthcare, a business unit of the Minnesota-based insurance giant UnitedHealth Group, controls a digital network so vast it processes nearly 1 in 3 U.S. patient records each year. The network is a critical conduit for shuttling information between most of the nation’s insurance companies and medical providers, who submit claims through it to get paid for treating patients.

For Benson, the cyberattack continues to significantly disrupt her business and her ability to pay her seven other clinicians.

Before the hack brought down the system, an insurance company would process a provider’s claim, then send a type of receipt known as an “electronic remittance,” which details the amount the provider was paid and whether the claim was denied. Without it, providers don’t know if they were paid correctly or how much to bill patients. 

Now, instead of automatically handling those receipts digitally, some insurers must send forms in the mail. The forms require manual entry, which Benson said is a time-consuming process because it requires her to match up service dates and details to divvy up pay among her clinicians. And from at least one insurer, she said, she has yet to receive any remittances.  

“I’m holding on to my sanity by a thread,” Benson said.

The situation is so dire, Alex Shteynshlyuger, a urologist who owns a practice in New York City, said he had to transfer money from his personal accounts to pay his office bills.  

“Look, I am freaking out,” Shteynshlyuger said. “Everyone is freaking out. We are like monkeys in a cage. We can’t really do anything about it.”

Roughly 30% of his claims were routed through Change’s platform. Except for Medicare and certain Blue Cross plans, he said, he has been unable to submit claims or receive payment from any insurers.

The company is encouraging struggling providers to reach out to the company directly via its website, said Tyler Mason, vice president of communications for UnitedHealth Group.

“I don’t think we’ve had a single provider that hasn’t been helped that’s contacted us.” As part of that help, Mason said, UnitedHealth has sent providers $7 billion so far.

Ever since the February cyberattack forced UnitedHealth to disconnect its Change platform, the company has been working “day and night to restore services” and has made “substantial progress,” UnitedHealth CEO Andrew Witty told shareholders April 16. 

“We see a fairly normal claims receipts and payments flow going on at this point,” Chief Financial Officer John Rex said during the shareholder call. “But we’ll really want to be careful on that because we know there are certain care providers out there that may have been left out of it.”

Rex said the company expects full operations to resume next year.

The company reported that the hacking has already cost it $870 million and that leaders expect the final tally to total at least $1 billion this year. To put that in perspective, the company reported $99.8 billion in revenue for the first quarter of 2024, an 8.6% increase over that period last year.

Meanwhile, the House Energy and Commerce Health Subcommittee held a hearing April 16 seeking answers on the severity and damage the cyberattack caused to the nation’s health system.

Subcommittee chair Brett Guthrie (R-Ky.) said a provider in his hometown is still grappling with the fallout from the attack and losing staff because they can’t make payroll. Providers “still haven’t been made whole,” Guthrie said.

Rep. Frank Pallone Jr. (D-N.J.) voiced concern that a “single point of failure” reverberated around the country, disrupting patients’ access and providers’ financial stability.

Lawmakers expressed frustration that UnitedHealth failed to send a representative to the Capitol to answer their questions. The committee had sent Witty a list of detailed questions ahead of the hearing but was still awaiting answers.

As providers wait, too, they are trying to cover the gaps. To pay her practice’s bills, Benson said, she had to take out a nearly $40,000 loan — from a division of UnitedHealth.

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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In San Francisco’s Chinatown, a CEO Works With the Community To Bolster Hospital

SAN FRANCISCO — Chinese Hospital, located in the heart of this city’s legendary Chinatown, struggles with many of the same financial and demographic challenges that plague small independent hospitals in underserved areas across the country.

Many of its patients are aging Chinese speakers with limited incomes who are reliant on Medicare and Medi-Cal, which pay less than commercial insurance and often don’t fully cover provider costs. And due to an arcane federal rule, Chinese Hospital receives a lower rate of reimbursement than many other hospitals that treat a large number of low-income patients. Add the high cost of labor and supplies in this post-pandemic world, and it’s not hard to see why the hospital lost $20 million over the past two years and tapped a nearly $10.4 million loan from the state’s distressed hospital loan fund.

Yet the 88-bed hospital has strong ties to the University of California-San Francisco and the city’s public health department. And it gets support from businesses, charities, and the surrounding community. For Jian Zhang, 58, the hospital’s CEO since 2017, fundraising is like breathing.

“I feel like it’s a full-time job for me,” said Zhang, who arrived in San Francisco from Guangzhou, China, as an international student in 1990, earned a nursing doctorate from the University of San Francisco, and has remained in the Bay Area.

Revenue from fundraising and other services have provided a big boost, helping the hospital significantly offset what it lost on patient care in 2022, according to the hospital and state data. By contrast, Madera Community Hospital and Beverly Hospital were far less able to do so. Those hospitals, which also serve low-income populations with many patients on government health care programs, filed for bankruptcy last year.

Chinese Hospital has its roots in a medicinal dispensary, founded in 1899 to provide health care for Chinese immigrants who were effectively excluded from mainstream medical facilities. The hospital itself opened in 1925, and a second building was added next door in 1979. In 2016, a new building replaced the original hospital.

Today, Chinese Hospital includes those two buildings plus five outpatient clinics offering Eastern and Western medicine, spread out across San Francisco and neighboring San Mateo County. Through partnerships, Chinese Hospital has been able to offer specialty services to its patients, including eye surgery, palliative care, and a stroke center. And $10 million in grants it received from the state last year will help build a subacute unit, which is for fragile patients who still need nursing and monitoring following a hospital stay.

In an interview with KFF Health News senior correspondent Bernard J. Wolfson, Zhang discussed the challenges facing small independent hospitals, including Chinese Hospital, and offered her vision for its future. The following Q&A has been edited for length and clarity:

Q: What are some of the main challenges your hospital faces?

We are facing all the challenges other hospitals are facing, especially the covid pandemic and its associated negative impact — the physician shortage and workforce shortage, the labor cost increases. But as a small community hospital, we don’t have a lot of reserve money. It’s hard to make ends meet.

That is a huge challenge because of the low reimbursement rate. We serve more than 80% Medicare and Medi-Cal patients.

Q: What are some specific challenges of serving a largely Chinese population?

In this market, with the workforce shortage, and especially after the pandemic, it’s even harder to recruit bilingual physicians, and other bilingual staff.

And culturally, Chinese patients, when they are sick, need to drink soup for healing or eat certain other foods for healing. You can’t be providing sandwiches and salads. They won’t eat that. So our kitchen has to provide Chinese food, has to boil soup, and then we have to cook different food for our patients who are non-Chinese.

Q: Are you concerned about the state’s budget shortfall?

Absolutely. We all were expecting that Medi-Cal would increase rates. We have been pushing that for many years. But if it’s not going to happen, a lot of our programs we probably won’t be able to do. I am very concerned about it.

Q: Chinese Hospital has its own health plan, and you said 40% to 50% of your patients are members of it. How has that helped?

It’s like Kaiser Permanente. You have your own members, and you manage them. You want your patients to be in outpatient. So you take care of them, keep them healthy, so they don’t need to come to the hospital for acute care. That’s how you save money.

Q: And I imagine that getting fixed monthly payments — capitation payments — for a large proportion of your patients also helps?

Definitely, capitation payments help. Especially during the pandemic. Think about it. If you didn’t have capitation payments, when procedures were canceled, you didn’t have income.

Q: What else has helped you weather the storm?

We have partnerships with San Francisco’s Department of Public Health and UCSF. During the pandemic, we took overflow patients from the city, so we didn’t have to lay off a lot of people. We signed a contract with the city to open up the second floor of our hospital to take overflow patients from Zuckerberg San Francisco General hospital.

Q: You also have strong fundraising activity.

We do have strong community support. The hospital is not just a hospital to me. It’s really part of our history. In the past, it was the only place [Chinese people] could go. Wherever I went, to a conference, for example, somebody would raise their hand and say, “Oh, I was born at Chinese Hospital” or “My grandfather was born at Chinese Hospital.” It is really, really deeply rooted in the community.

Q: What’s your vision for the future of the hospital?

Chinese Hospital is very important to the community, and I want to see it survive and thrive. But it definitely needs support from the government and from the community. Moving forward, we will continue to build on collaborations and partnerships.

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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Too Big To Fail? Now It’s ‘Too Big To Hack’

The Host

Mary Agnes Carey KFF Health News @maryagnescarey Read Mary Agnes' stories.

Lawmakers in Washington this week held the first congressional hearing on the Change Healthcare cyberattack, a breach that sent shock waves through the health care system as payments for care ground to a halt and left some providers in financial trouble. Republicans and Democrats alike zeroed in on how big health care conglomerations — like Change’s parent company, UnitedHealth Group — are leaving patients vulnerable.

And nearly 1 in 4 adults who lost Medicaid coverage in the past year are now uninsured, according to a new KFF survey probing the effects of what’s known as the “unwinding” of enrollments in the government insurance program for low-income people since pandemic-era protections expired.

This week’s panelists are Mary Agnes Carey of KFF Health News, Jessie Hellmann of CQ Roll Call, Sarah Karlin-Smith of the Pink Sheet, and Lauren Weber of The Washington Post.

Panelists

Jessie Hellmann CQ Roll Call @jessiehellmann Read Jessie's stories. Sarah Karlin-Smith Pink Sheet @SarahKarlin Read Sarah's stories. Lauren Weber The Washington Post @LaurenWeberHP Read Lauren's stories.

Among the takeaways from this week’s episode:

  • Though the Change Healthcare hearing on Capitol Hill illuminated bipartisan agreement on the perils of vertical integration in health care, lawmakers did not agree on possible solutions. Addressing consolidation, however, could remedy issues in health care beyond cybersecurity.
  • The KFF survey on the unwinding found that nearly half of those who lost coverage signed back up for Medicaid weeks or months later, a signal that those enrollees should never have been dropped in the first place. Even a temporary loss in health coverage can have serious, lingering consequences.
  • Republicans in Arizona are grappling with the fallout from the state’s newly reinstated, Civil War-era abortion law — echoing recent problems for Alabama Republicans after a state Supreme Court ruling upended access to in vitro fertilization there. Softened stances from conservative hard-liners like Senate candidate Kari Lake point to the potential negative consequences for the party in a critical election year.
  • And the Centers for Disease Control and Prevention released new information about the current measles outbreak, revealing that many of those sickened are children, as well as adults who are unvaccinated or whose vaccination status is unknown.

Also this week, Julie Rovner, KFF Health News’ chief Washington correspondent, interviews Caroline Pearson of the Peterson Health Technology Institute.

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

Mary Agnes Carey: KFF Health News’ “When Rogue Brokers Switch People’s ACA Policies, Tax Surprises Can Follow,” by Julie Appleby. 

Jessie Hellmann: Tampa Bay Times’ “Vulnerable Florida Patients Scramble After Abrupt Medicaid Termination,” by Teghan Simonton. 

Sarah Karlin-Smith: Stat’s “Grocers Are Pushing Legislation They Claim Would Enhance Food Safety. Advocates Say It Would Gut FDA Rules,” by Nicholas Florko. 

Lauren Weber: The New York Times’ “Chinese Company Under Congressional Scrutiny Makes Key U.S. Drugs,” by Christina Jewett. 

Also mentioned on this week’s podcast:

Credits

Francis Ying Audio producer Emmarie Huetteman Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on SpotifyApple PodcastsPocket Casts, or wherever you listen to podcasts.

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

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Medicare’s Push To Improve Chronic Care Attracts Businesses, but Not Many Doctors

Carrie Lester looks forward to the phone call every Thursday from her doctors’ medical assistant, who asks how she’s doing and if she needs prescription refills. The assistant counsels her on dealing with anxiety and her other health issues.

Lester credits the chats for keeping her out of the hospital and reducing the need for clinic visits to manage chronic conditions including depression, fibromyalgia, and hypertension.

“Just knowing someone is going to check on me is comforting,” said Lester, 73, who lives with her dogs, Sophie and Dolly, in Independence, Kansas.

At least two-thirds of Medicare enrollees have two or more chronic health conditions, federal data shows. That makes them eligible for a federal program that, since 2015, has rewarded doctors for doing more to manage their health outside office visits.

But while early research found the service, called Chronic Care Management, reduced emergency room and in-patient hospital visits and lowered total health spending, uptake has been sluggish.

Federal data from 2019 shows just 4% of potentially eligible enrollees participated in the program, a figure that appears to have held steady through 2023, according to a Mathematica analysis. About 12,000 physicians billed Medicare under the CCM mantle in 2021, according to the latest Medicare data analyzed by KFF Health News. (The Medicare data includes doctors who have annually billed CCM at least a dozen times.)

By comparison, federal data shows about 1 million providers participate in Medicare.

Even as the strategy has largely failed to live up to its potential, thousands of physicians have boosted their annual pay by participating, and auxiliary for-profit businesses have sprung up to help doctors take advantage of the program. The federal data showed about 4,500 physicians received at least $100,000 each in CCM pay in 2021.

Through the CCM program, Medicare pays to develop a patient care plan, coordinate treatment with specialists, and regularly check in with beneficiaries. Medicare pays doctors a monthly average of $62 per patient, for 20 minutes of work with each, according to companies in the business.

Without the program, providers often have little incentive to spend time coordinating care because they can’t bill Medicare for such services.

Health policy experts say a host of factors limit participation in the program. Chief among them is that it requires both doctors and patients to opt in. Doctors may not have the capacity to regularly monitor patients outside office visits. Some also worry about meeting the strict Medicare documentation requirements for reimbursement and are reluctant to ask patients to join a program that may require a monthly copayment if they don’t have a supplemental policy.

“This program had potential to have a big impact,” said Kenneth Thorpe, an Emory University health policy expert on chronic diseases. “But I knew it was never going to work from the start because it was put together wrong.”

He said most doctors’ offices are not set up for monitoring patients at home. “This is very time-intensive and not something physicians are used to doing or have time to do,” Thorpe said.

For patients, the CCM program is intended to expand the type of care offered in traditional, fee-for-service Medicare to match benefits that — at least in theory — they may get through Medicare Advantage, which is administered by private insurers.

But the CCM program is open to both Medicare and Medicare Advantage beneficiaries.

The program was also intended to boost pay to primary care doctors and other physicians who are paid significantly less by Medicare than specialists, said Mark Miller, a former executive director of the Medicare Payment Advisory Commission, which advises Congress. He’s currently an executive vice president of Arnold Ventures, a philanthropic organization focused on health policy. (The organization has also provided funding for KFF Health News.)

Despite the allure of extra money, some physicians have been put off by the program’s upfront costs.

“It may seem like easy money for a physician practice, but it is not,” said Namirah Jamshed, a physician at UT Southwestern Medical Center in Dallas.

Jamshed said the CCM program was cumbersome to implement because her practice was not used to documenting time spent with patients outside the office, a challenge that included finding a way to integrate the data into electronic health records. Another challenge was hiring staff to handle patient calls before her practice started getting reimbursed by the program.

Only about 10% of the practice’s Medicare patients are enrolled in CCM, she said.

Jamshed said her practice has been approached by private companies looking to do the work, but the practice demurred out of concerns about sharing patients’ health information and the cost of retaining the companies. Those companies can take more than half of what Medicare pays doctors for their CCM work.

Physician Jennifer Bacani McKenney, who runs a family medicine practice in Fredonia, Kansas, with her father — where Carrie Lester is a patient — said the CCM program has worked well.

She said having a system to keep in touch with patients at least once a month has reduced their use of emergency rooms — including for some who were prone to visits for nonemergency reasons, such as running out of medication or even feeling lonely. The CCM funding enables the practice’s medical assistant to call patients regularly to check in, something it could not afford before.

For a small practice, having a staffer who can generate extra revenue makes a big difference, McKenney said.

While she estimates about 90% of their patients would qualify for the program, only about 20% are enrolled. One reason is that not everyone needs or wants the calls, she said.

While the program has captured interest among internists and family medicine doctors, it has also paid out hundreds of thousands of dollars to specialists, such as those in cardiology, urology, and gastroenterology, the KFF Health News analysis found. Primary care doctors are often seen as the ones who coordinate patient care, making the payments to specialists notable.

A federally funded study by Mathematica in 2017 found the CCM program saves Medicare $74 per patient per month, or $888 per patient per year — due mostly to a decreased need for hospital care.

The study quoted providers who were unhappy with attempts to outsource CCM work. “Third-party companies out there turn this into a racket,” the study cited one physician as saying, noting companies employ nurses who don’t know patients.

Nancy McCall, a Mathematica researcher who co-authored the 2017 study, said doctors are not the only resistance point. “Patients may not want to be bothered or asked if they are exercising or losing weight or watching their salt intake,” she said.

Still, some physician groups say it’s convenient to outsource the program.

UnityPoint Health, a large integrated health system based in Iowa, tried doing chronic care management on its own, but found it administratively burdensome, said Dawn Welling, the UnityPoint Clinic’s chief nursing officer.

For the past year, it has contracted with a Miami-based company, HealthSnap, to enroll patients, have its nurses make check-in calls each month, and help with billing. HealthSnap helps manage care for over 16,000 of UnityHealth’s Medicare patients — a small fraction of its Medicare patients, which includes those enrolled in Medicare Advantage.

Some doctors were anxious about sharing patient records and viewed the program as a sign they weren’t doing enough for patients, Welling said. But she said the program has been helpful, particularly to many enrollees who are isolated and need help changing their diet and other behaviors to improve health.

“These are patients who call the clinic regularly and have needs, but not always clinical needs,” Welling said.

Samson Magid, CEO of HealthSnap, said more doctors have started participating in the CCM program since Medicare increased pay in 2022 for 20 minutes of work, to $62 from $41, and added billing codes for additional time.

To help ensure patients pick up the phone, caller ID shows HealthSnap calls as coming from their doctor’s office, not from wherever the company’s nurse might be located. The company also hires nurses from different regions so they may speak with dialects similar to those of the patients they work with, Magid said.

He said some enrollees have been in the program for three years and many could stay enrolled for life — which means they can bill patients and Medicare long-term.

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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