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

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

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

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

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

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

Among Iezzoni’s notable findings published in recent years:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Kevin Stansbury, CEO del Lincoln Community Hospital de Hugo, un pueblo de 800 habitantes en Colorado, se enfrenta a un clásico dilema: podría aumentar los ingresos de su hospital rural ofreciendo prótesis de cadera y operaciones de hombro, pero el centro de salud, con 64 años de antigüedad, necesita más dinero para poder ampliar su quirófano y realizar esas intervenciones.

“Tengo un cirujano dispuesto a hacerlo; pero mis instalaciones no son lo bastante grandes”, dijo Stansbury. “Y en mi hospital no puedo hacer servicios urgentes como obstetricia porque mi instalación no cumple con el código”.

Además de asegurar ingresos adicionales para el hospital, una ampliación de este tipo podría evitar que los habitantes de la zona tengan que conducir 100 millas hasta Denver para someterse a operaciones ortopédicas o dar a luz.

Los hospitales rurales a lo largo del país se enfrentan a un dilema similar.

El aumento de los costos, en medio de reducciones de los pagos de las aseguradoras, dificulta que los pequeños hospitales obtengan financiación para grandes renovaciones. Además, la elevada inflación y el aumento de las tasas de interés, como consecuencia de la pandemia, complica la obtención de préstamos u otros tipos de financiación para modernizar las instalaciones y adaptarlas a los estándares de la atención médica en constante cambio.

“La mayoría trabajamos con márgenes muy bajos, si es que tenemos alguno”, afirmó Stansbury. “Así que nos cuesta encontrar el dinero”.

El envejecimiento de las infraestructuras hospitalarias, sobre todo en las zonas rurales, es un problema que va en aumento. Los datos sobre la edad de los hospitales son difíciles de conseguir, porque se amplían, modernizan y remodelan diferentes partes de sus instalaciones a lo largo del tiempo.

Un análisis de 2017 de la American Society for Health Care Engineering, que forma parte de la American Hospital Association, descubrió que la edad media de los hospitales en Estados Unidos aumentó de 8,6 años en 1994 a 11,5 años en 2015. Ese número probablemente ha crecido, según conocedores de la industria, ya que muchos hospitales retrasaron los proyectos de mejora, particularmente durante la pandemia.

Una investigación publicada en 2021 por la empresa de planificación de capital Facility Health Inc, ahora llamada Brightly, reportó que los centros de salud estadounidenses habían aplazado un 41% de su mantenimiento y necesitarían $243,000 millones para ponerse al día.

Los hospitales rurales no disponen de los recursos de los grandes hospitales, sobre todo los que forman parte de cadenas hospitalarias, para financiar ampliaciones multimillonarias.

La mayoría de los hospitales rurales en funciones hoy se abrieron con fondos del Hill-Burton Act, una ley aprobada por el Congreso en 1946. Este programa se integró en la Ley de Servicios de Salud Pública en la década de 1970 y, en 1997, había financiado la construcción de casi 7,000 hospitales y clínicas. Ahora, muchos de esos edificios, sobre todo los rurales, necesitan mejoras urgentes.

Stansbury, que también preside el consejo de administración de la Colorado Hospital Association, señaló que al menos media docena de hospitales rurales del estado necesitan importantes inversiones de capital.

Harold Miller, presidente y CEO del Center for Healthcare Quality and Payment Reform, un think tank de Pittsburgh, afirmó que el principal problema de los pequeños hospitales rurales es que los seguros privados ya no cubren el costo total de la asistencia. Según Miller, Medicare Advantage, un programa por el que Medicare paga a planes privados para dar cobertura a personas mayores y discapacitadas, es uno de los principales responsables del problema.

“Básicamente, apartan a los pacientes de lo que puede ser el mejor pagador que tiene un pequeño hospital, y se los llevan a un plan privado, que no paga de la misma manera que Medicare tradicional y termina utilizando una variedad de técnicas para rechazar los reclamos”, explicó Miller.

Además, los hospitales rurales deben dotar sus servicios de urgencias de médicos las 24 horas del día, pero sólo cobran si hay pacientes.

Mientras tanto, los costos laborales desde el fin de la pandemia han aumentado, y la inflación ha disparado el precio de los suministros. Es probable que estas dificultades financieras obliguen a cerrar más hospitales rurales.

Los cierres de hospitales se redujeron durante la pandemia, de un récord de 18 cierres en 2020 a un total de ocho cierres en 2021 y 2022, según el Centro Cecil G. Sheps para la Investigación de Servicios de Salud de la Universidad de Carolina del Norte-Chapel Hill, porque los fondos de ayuda de emergencia los mantuvieron abiertos. Pero ese soporte vital ha terminado, y al menos nueve más cerraron en 2023. Según Miller, los cierres han vuelto a los niveles anteriores a la pandemia.

Esto hace temer que algunos hospitales inviertan en nuevas instalaciones y acaben cerrando de todos modos. Miller aseguró que sólo una pequeña parte de los hospitales rurales conseguiría una mejora significativa en sus finanzas agregando nuevos servicios.

Legisladores han intentado ayudar. California, por ejemplo, cuenta con programas de préstamos a bajo o ningún interés en los que pueden participar los hospitales rurales, y representantes de los hospitales le han pedido a los legisladores de Colorado que aprueben ayudas similares.

A nivel federal, la legisladora Yadira Caraveo, demócrata de Colorado, ha presentado el proyecto de ley bipartidista Rural Health Care Facilities Revitalization Act, que ayudaría a los hospitales rurales a obtener más fondos a través del Departamento de Agricultura de Estados Unidos (USDA).

El USDA ha sido uno de los mayores financiadores del desarrollo rural a través de los Community Facilities Programs, proporcionando más de $3 mil millones en préstamos al año. En 2019, la mitad de los más de $10 mil millones en préstamos pendientes a través del programa ayudaron a instalaciones de salud.

“De lo contrario, los centros tendrían que recurrir a prestamistas privados”, dijo Carrie Cochran-McClain, directora de la National Rural Health Association.

Los hospitales rurales pueden no resultar muy atractivos para los prestamistas privados debido a sus limitaciones financieras, y por lo tanto tendrían que pagar tasas de interés más altas o cumplir requisitos adicionales para obtener esos préstamos, agregó.

El proyecto de ley de Caraveo también permitiría a los hospitales, que ya tienen préstamos, refinanciarlos a tipos de interés más bajos, y cubriría más categorías de equipos médicos, como los dispositivos y la tecnología utilizados para la telesalud.

“Tenemos que mantener estos centros abiertos, no sólo para urgencias, sino también para dar a luz o para una consulta de cardiología”, explicó Caraveo, que también es pediatra. “No deberías tener que conducir dos o tres horas para tener esos servicios”.

Kristin Juliar, consultora de recursos de capital de la National Organization of State Offices of Rural Health, ha estudiado los retos a los que se enfrentan los hospitales rurales a la hora de pedir dinero prestado y planificar grandes proyectos.

“Intentan hacer esto mientras realizan su trabajo habitual dirigiendo un hospital”, dijo Juliar. “Por ejemplo, muchas veces, cuando surgen oportunidades de financiación, la agenda puede ser demasiado ajustada para que puedan desarrollar un proyecto”.

Parte de la financiación depende de que el hospital consiga fondos de contrapartida, lo que puede resultar difícil en comunidades rurales de bajos recursos. Y la mayoría de los proyectos exigen que los hospitales reúnan fondos de varias fuentes, lo que suma complejidad.

Y como la elaboración de estos proyectos suele llevar mucho tiempo, los CEO o los miembros del consejo de administración de los hospitales rurales a veces dejan el cargo antes de que se finalicen.

“Te pones manos a la obra y luego desaparecen personas clave, y entonces te sientes como si empezaras de nuevo”, explicó Juliar.

El hospital de Hugo abrió sus puertas en 1959, por iniciativa de los soldados que regresaban de la Segunda Guerra Mundial al condado de Lincoln, en las llanuras del este de Colorado. Donaron dinero, materiales, terrenos y mano de obra para construirlo. El hospital ha agregado cuatro clínicas de medicina familiar, un centro de enfermería especializada y un centro de vida asistida fuera de las instalaciones. Y atrae a especialistas de Denver y Colorado Springs.

A Stansbury le gustaría construir un nuevo hospital de aproximadamente el doble de tamaño que el actual, de 45,000 pies cuadrados. Dado que la inflación está bajando y es probable que las tasas de interés bajen este año, Stansbury espera conseguir financiación en 2024 y empezar a construir en 2025.

“El problema es que cada día que me despierto es más caro”, afirmó Stansbury.

Cuando autoridades del hospital se plantearon por primera vez la construcción de un nuevo hospital hace tres años, calcularon que el costo total del proyecto rondaría los $65 millones. Pero la inflación se disparó y ahora han subido las tasas de interés, lo que ha elevado el costo total a $75 millones.

“Si tenemos que esperar un par de años más, puede que nos acerquemos a los $80 millones”, señaló Stansbury. “Pero tenemos que hacerlo. No puedo esperar cinco años y pensar que los costos de construcción van a bajar”.

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

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The Host

Julie Rovner
KFF Health News

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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.

As this election year begins in earnest, making it harder for Congress to pass bills, lawmakers on Capitol Hill are still struggling to fund the government for the fiscal year that began last October. And many health priorities hang in the balance.

Meanwhile, the Supreme Court is again wading into the abortion debate, accepting a case out of Idaho that pits a federal law requiring emergency care, including for pregnant women, against the state’s strict abortion ban.

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

Panelists

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

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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:

• In Washington, lawmakers have reportedly reached a deal that could pave the way for passing necessary government spending bills. But it is unlikely they will pass a full package before the current extensions end, leaving many federal health programs hanging. And ahead of next week’s Iowa caucuses, it bears asking what Republicans would do in health if the party reclaims the White House.
• The Supreme Court is again stepping into the fray over abortion rights, choosing to review the conflict between Idaho’s abortion ban and a federal law requiring emergency medical care. It is notable that justices did not have to take this case and, by swooping in now, are setting up another major abortion ruling before the 2024 election.
• The Biden administration announced it will scale back so-called conscience protections for health providers that the Trump administration sought to beef up. The back-and-forth over the policy — which was created during the George W. Bush administration — reinforces the importance of pressing presidential candidates about what they would do administratively on abortion policy, rather than asking what bills they might sign into law.
• News out of Florida this week: Newly introduced legislation there would, among other things, classify abortion as a felony and penalize those outside the state involved in the sale or distribution of abortion pills if they are “likely to be used in Florida” — a concerning example of a state effort to regulate access to abortion nationwide.
• And the FDA approved Florida’s request to import drugs from Canada, a change for which Republican Gov. Ron DeSantis is taking credit — though both President Joe Biden and former president Donald Trump could also claim some of that credit. But there are a lot of hurdles left before the state receives its first shipments, and due to the way the policy will be implemented, it may not save the state much money anyway.

“This Week in Health Misinformation” highlights Olympic gold medalist and medical crowdfunding beneficiary Mary Lou Retton, who said this week she could not afford health insurance before her headline-grabbing bout of pneumonia because her preexisting conditions made having insurance too expensive. But a decade into the existence of the Affordable Care Act, the fact is that patients can no longer be penalized on the insurance market for preexisting conditions — and, as the record 20 million Americans who enrolled in ACA coverage this year may attest, there are plenty of federal subsidies available to help afford insurance, too.

Also this week, Rovner interviews American Medical Association President Jesse Ehrenfeld, whose focus is helping the nation’s physicians navigate a rapidly changing health care system.

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

Julie Rovner: CNN’s “Bottled Water Contains Thousands of Nanoplastics So Small They Can Invade the Body’s Cells, Study Says,” by Sandee LaMotte. Also, ScienceAlert’s “It Turns Out Paper Straws Might Pose a Serious Problem Too,” by Carly Cassella. Also, The Washington Post’s “How Plastic Hides in Supposedly Eco-Friendly Laundry Products,” by Michael J. Coren.

Tami Luhby: KFF Health News’ “Most People Dropped in Medicaid ‘Unwinding’ Never Tried to Renew Coverage, Utah Finds,” by Phil Galewitz.

Alice Miranda Ollstein: Stat’s “Texas Taxpayers Wanted to Help the Poor Get Health Care. Instead They’re Funding a Medical School at a Wealthy University,” by Rachel Cohrs.

Sarah Karlin-Smith: The New York Times’ “The F.D.A. Warned an Asthma Drug Could Induce Despair. Many Were Never Told,” by Christina Jewett and Benjamin Mueller.

click to open the transcript

Transcript: All About the (Government) Funding

KFF Health News’ ‘What the Health?’Episode Title: 329Episode Number: All About the (Government) FundingPublished: Jan. 11, 2024

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Jan. 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: Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Hi, everybody.

Rovner: And Tami Luhby of CNN.

Tami Luhby: Good morning.

Rovner: Later in this episode, we’ll have my interview with Jesse Ehrenfeld, this year’s president of the American Medical Association. It’s a bumpy time to be a doctor, and the AMA is more relevant than it’s been for quite a few years. But first, this week’s news. So we heard over the weekend that House and Senate negotiators reached a deal on top-line spending ceilings for defense and non-defense discretionary spending.

Actually, they were kind of the top lines, I believe, that they agreed to last summer, and then the House Republicans tried to change. That is all well and good, and it is definitely a prerequisite for passing full-year appropriations bills, but that’s not going to happen between now and Jan. 19, when the first of two temporary spending bills expires. So what do we expect to happen?

Ollstein: I was up on the Hill yesterday, and it’s a very “what they’re saying vs. what they’re doing” situation. They’re talking a lot about, “We got this top line. We’re moving forward. People are somewhat warming to the idea of another short-term CR [continuing resolution] to give them a little breathing room to get this done.” But then Republicans who were pissed about the entire process voted down an unrelated rule on an unrelated bill just to say, “We’re mad.” So that’s obviously not a good sign for getting big things done quickly in the next few weeks.

An issue I’m tracking is also conservatives who are disgruntled about the level of spending being higher than they wanted, saying, “Well, if we’re going to agree to this, we might as well get some policy wins out of it.” And they’re digging in harder on some of these anti-abortion provisions, other culture war things. I think the health care ones are being somewhat overshadowed right now by the immigration border stuff, but the health care things are still in the mix, for sure.

Rovner: Yeah. The CR that expires first also includes continuing authorizations for a bunch of health programs like community health centers and a delay of a bunch of scheduled Medicare payment cuts. Tami, you’re following WIC [Women, Infants, and Children nutrition program], I know, and food stamps. Do we have any idea what the fate is going to be of these things that will also expire when that first CR expires? Do we expect they’ll continue until Congress decides what to do?

Luhby: Well, actually things are looking a little better for WIC participants in terms of a shutdown, not necessarily in terms of full-year funding. But if the government had shut down in October, the USDA warned that it actually only had a few days left of money to provide for WIC. But if the government does shut down next week, then the USDA has told me that SNAP participants, food stamp participants, and WIC participants can expect to continue to get their benefits for food stamps January and February and for WIC January, February, March.

But separate from that, one of the issues that WIC participants have — and WIC, by the way, is the program that provides funding for pregnant women, new moms, infants, and young children to buy groceries. The WIC program is underfunded because there’s actually a big growth in enrollment. And so, even though the Senate provided some more money in their initial bill, they actually need more than a billion dollars more to continue the program at the current participation levels.

And a lot of folks are warning that if Congress doesn’t provide more money, there could actually be waiting lists for the first time in decades. So it’s a big issue that’s continuing because, as we know, the Republicans are not looking to add more money to nutrition assistance.

Rovner: Jumping ahead, it’s a little bit to the abortion debate. This is the argument that if you’re basically going to force women to have babies, you’re going to need to help support them if the women otherwise would’ve had an abortion because they couldn’t afford it. I think where we are with WIC, I think, is sort of the leading edge of this.

Luhby: And WIC is actually very important to that because it also provides breastfeeding assistance and guidance as well as other supports for new moms.

Rovner: So there were things, though, that didn’t even make it into the CR. One of them is the 3.4% cut in Medicare doctor pay. That took effect Jan. 1. Doctors I know would like to get that rolled back. There’s other things that are hoping to catch a ride on whatever the next vehicle is, right?

Karlin-Smith: I mean, one thing I had been watching is PBM [pharmacy benefit manager] reform. There seemed like there was some bipartisan and bicameral momentum to try and tack that on to the next big moving package. And one positive thing for that is that it does offer some amount of savings that then could be applied to other areas like spending, including potentially helping maybe with some of the Medicare cuts. So that’s something in the mix to look for.

Rovner: Yeah. Something that actually is proceeding on a separate track, right? We don’t expect that to be folded into the appropriations — unless we do. My impression was that was proceeding on its own, at least for the moment.

Karlin-Smith: I think it was proceeding on its own, but there’s been talk of could they fold it into any deal that struck to fund the government, because I think the likelihood that it really does fully clear both the House and Senate on their own is small.

Rovner: Yes, it is an election year. It is harder for Congress to get anything done. Speaking of which, on the campaign trail, the Iowa caucus is next week. Boy, that sort of snuck up on us. Former President [Donald] Trump still seems very likely to win, and he’s once again vowing to undo the Affordable Care Act, which, by the way, hit an all-time enrollment record of 20 million this week. And open enrollment isn’t even quite over. Tami, do we know what Trump would do instead? That seems to be the part. He doesn’t ever say.

Luhby: No. It’s pretty much the same plan that he probably has from 2016 and 2017, which we never really fully learned about. So, no, it’s just going to be replaced with a “better plan” because, in his view, Obamacare is failing, and as we know, [Florida Gov.] Ron DeSantis also jumped on the same bandwagon, saying that he would actually also come up with a better plan, but he needs a few months to think about it.

Rovner: Because it’s always been right about to happen, of course.

Luhby: Well, as you may have heard, health care is complicated.

Rovner: And we’ll see something in two weeks.

Luhby: Right. Along with his block grant proposal for Medicaid that he mentioned at last night’s CNN debate.

Rovner: Yes. I was sort of taken by the comments of how they would fix health care in that debate, because Nikki Haley says, “We can fix it with tort reform and transparency.”

Luhby: Transparency. Yes.

Rovner: Right. Which are nice things, and as we say, almost every week, Congress is working on those things, but they are not going to solve what ails the health care system. All right, let us turn to abortion. Remember last week when I said we were still waiting to hear from the Supreme Court on the emergency petition from Idaho regarding the conflict between its state abortion ban and the federal Emergency Medical Treatment & Active Labor Act, EMTALA?

Well, on Friday, the court not only took the case, it overturned the stay of Idaho’s ban. So, at least for now, doctors cannot even provide abortions in medical emergencies unless the woman is at immediate risk of death. Alice, I assume that gives us a hint of where the court might be going with this case, and I imagine also that similar case out of Texas.

Ollstein: Yeah. So again, with the Supreme Court, you kind of have to read the tea leaves and make educated guesses. They’re obviously very secretive. But people who are following this case closely that I’ve spoken to, they think that both the stay of the lower-court ruling and the fact that they took this case at all is the sign that they’re really gunning for ruling on the side of the state abortion restrictions. Because this is really about the state-federal clash. When state abortion bans run into federal protections for patients in emergency circumstances, and which will prevail in that circumstance. So they didn’t have to take this case. The thinking was there is eventually going to be a circuit split on this issue between the 9th Circuit and the 5th Circuit. But the 9th Circuit hasn’t had a chance to rule yet. And so they could have waited, let this play out, allowed the 9th Circuit to hear the case and issue a decision, that would’ve probably punted this case until after the election. So it’s really interesting that they instead wanted to swoop in, allow Idaho to leapfrog the 9th Circuit, and also insert themselves into this really politically volatile case, and now they’re poised to issue a ruling right before the 2024 election that could have major implications for the whole country.

Rovner: They’re going to hear the mifepristone case before this summer too, right?

Ollstein: Absolutely. And so even people who had sort of assumed on the mifepristone case like, “Oh, the Supreme Court’s going to kind of punt. They’re going to dismiss on standing.” Now, because of how aggressive they’re being in this other case, I have experts telling me, “Well, now I’m not so sure about the mifepristone case. Maybe they don’t care about optics as much as they used to.”

Rovner: Well, also, I think this is this Supreme Court’s theme, of “let states do whatever they want.” Even though federal law is supposed to trump state law, they seem to be reversing that in a rather aggressive fashion.

Ollstein: Yes. A big theme is definitely skepticism of federal rulemaking power. This falls under that same category as well.

Rovner: Well, speaking of federal rulemaking power, those who follow abortion policy in D.C. know that every time an administration changes parties, the so-called Mexico City policy that bans funding to international groups that support abortion rights gets either canceled or restored, depending on which party is in power. Well, now we have another policy that seems to be flip-flopping every time an administration changes. It was a rule first issued at the end of the George W. Bush administration. The so-called conscience rule made it easier for medical professionals and others in health care to decline to provide care that violates their religious or moral beliefs. So not just abortion but transgender care, in some cases, just treating people with AIDS. The Obama administration scaled back the Bush rule, and then the Trump administration broadened it. Then it got blocked by the courts, and now the Biden administration has formally rolled back the Trump changes that never really took effect. Alice, where are we with this?

Ollstein: Like you said, this is a back-and-forth, and I think this is why a lot of the questions being asked of candidates on the campaign trail right now, related to abortion, are the wrong questions. They keep getting asked about what kind of bills they would sign. That’s not the question. The question is what would they do administratively, which they could do so much. They could undo this. They could reverse all kinds of things. I follow the Title X stuff. I follow the Mexico City policy on restrictions on international spending on reproductive health. There’s just so much, obviously — FDA regulation of abortion pills — but these are the things we should be focused [on], not a bill that Congress has shown itself unable to pass even with one-party control of Congress.

Rovner: Nikki Haley keeps correctly saying there aren’t 60 votes for anything in the Senate related to abortion.

Ollstein: Right. But then, she also is saying that to mean a future Republican president couldn’t really do much, and that part is not true. They could do a lot.

Rovner: Exactly. Well, moving on, it’s January, and state legislatures are coming back into session. And we’re seeing some pretty eye-popping bills introduced in Florida, where abortion rights supporters just secured enough signatures to get a referendum protecting abortion rights on the 2024 ballot. Republican state Rep. David Borrero introduced a bill that would not only ban abortion, it would classify it as a third-degree felony with penalties of up to 10 years in prison. It also seeks to reach anyone outside the state who makes, sells, or mails abortion pills if they are, quote, “likely to be used in Florida.” The bill also defines personhood as beginning at the moment of fertilization, which would, among other things, make most birth control illegal and give fetuses constitutional rights. Alice, this bill is obviously not likely to pass, but legislators are playing the long game here by trying to make these things look sort of not out of the ordinary, right?

Ollstein: Yeah, the pill one, I think, is more the one to watch there. I’m curious if other states try to do that as well. Obviously, that runs into legal concerns about regulating interstate commerce, et cetera. But I think that we’ve seen these sort of nation attempts to restrict the movement of both people and medications across state lines, since that is a huge way that people are managing to terminate pregnancies despite bans right now. And so I think there’s only going to be more and more activity in that area to try to close off those remaining outlets for people. But yes, on the personhood front, that’s something that states have been attempting to do for a long time now, obviously more recently. And I think there’s sort of a strategy of, “Let’s just put it in everything we can. Let’s throw it in everything we can. Let’s throw it in bills. Let’s throw it in amicus briefs.” And the hope is to eventually force this issue in court and to get a court to rule on whether the 14th Amendment covers fetuses, basically. Will that happen and when remains to be seen, but there’s definitely an effort to sort of seed it in the landscape.

Rovner: Sarah, this obviously — not so much the personhood part, although maybe that too — but trying to ban the movement of medication is something that clearly impacts the FDA. They seem to have been pretty quiet about this, but there’s an awful lot that seems to be sort of threatening the basic core procedures of what the FDA does. Are you hearing anybody whispering about this? Is there concern?

Karlin-Smith: I think the mifepristone case at the Supreme Court is a concern for people who watch FDA’s power and regulation, not just because of abortion but because it is seen as depending on how the court decides that case is something that really could touch on all of its regulatory authority as well. Certainly, this provision that Florida is trying to put in is really something where they seem like they’re effectively trying to regulate the abortion pill throughout the entire country and regulate manufacturers. So that would be concerning, again, if that somehow came to pass and was not struck down by courts, as Alice mentioned, for interstate commerce regulation, which is not some power that is usually given to the states, but so, in general, the abortion pill controversy makes anybody who’s impacted by the FDA regulation nervous.

Rovner: Well, meanwhile, the Federal Trade Commission has entered the chat. This week, it barred a tech company from selling data on people’s visits to medical centers and other health facilities. This was not affecting abortion. They were actually just trying to help people figure out where people are and help them sort of get through their medical undertakings. But this seems like kind of a big deal enforcing privacy post-Dobbs. It’s the first one of these I’ve seen. Have you seen any of these, Alice?

Ollstein: I’m in the same camp as you. Yeah. This is sort of the first I’ve seen of this. But as has been the trend over the last couple of years, it’s a very “throw things against the wall and see what sticks” kind of environment, and so you can’t dismiss the outliers because the outliers can very quickly become the norm.

Rovner: This obviously was not a company that was trying to get women’s menstrual data and figure out whether they’re pregnant and whether they’re going to have an abortion. But there is a lot of concern that because there’s so much medical data floating out now in the metaverse, shall we say, that it would not be that hard to do that. And I guess the FTC is trying to plant a flag and say, “Mm-mm, don’t even try.” Although I’m sure people will …

Ollstein: Again, circling back to our previous theme, like, who a presidential administration installs at places like the FTC that you might not think that has anything to do with health care and abortion, but it certainly does. It certainly can. Same with DOJ, Labor Department. A lot of these things touch on reproductive health in ways that aren’t always obvious.

Rovner: That’s right. Well, turning to prescription drug news, the FDA has approved Florida’s request to import cheaper drugs from Canada. But, Tami, you wrote about this. This comes with a long list of caveats, right? It’s not like they just opened the borders and said, “OK, buy what you want.”

Luhby: No, and Florida has also put forth a fairly restricted proposal. It’s only going to be for people in their public payer program, people like inmates and people who are cared for by the county health systems and, later, Medicaid. And it’s also a pretty small list of drugs, drugs for HIV/AIDS and mental illness, and certain ones. But no, there’s a lot of hurdles before the state can actually start importing drugs. There’s going to likely be a lawsuit by PhRMA. They came out pretty strongly against it. They don’t want this, and Canada doesn’t necessarily want this. They said this in 2020 when the Trump administration first indicated that they were going to move in this direction, and then Health Canada on Friday put out a pretty strong statement saying they are clear in its position. “Bulk importation will not provide an effective solution to the problem of high drug prices in the U.S.” So there’s a long path before Florida will be able to actually see this and an even longer path before its general residents will see it. People may think, “Oh, I can go up to CVS now and order my Canadian version of the drug, which will be much cheaper.” And that’s not at all the case.

Rovner: Sarah, this has been going on for more than 20 years — I think I covered it first time in 1998 — because it’s really popular among Republicans and Democrats because it sounds so good. “We’ll just buy cheaper drugs from other countries where they have the same drugs, and they sell them for less money because they have price controls.” But Canada can’t even supply Florida, much less the rest of the country, right?

Karlin-Smith: Right. I think people, sometimes you look at Canada on a map geographically. It’s a very large area, but the population compared to the U.S. is much smaller. So the supply chain that’s feeding Canada is very different. And then you get into why HHS and FDA has usually pushed back against this idea is because they’re concerned about securing the supply-chain safety and making sure people are actually getting what they … think they’re getting and know how to use the drug. And what’s basically happened under starting the Trump administration and then Biden’s kind of continued it is they came up with a pathway to sort of make importation potentially possible. But they put in so many hoops that these states will have to go through and so many processes in place to ensure the safety of it that by the time Florida does all of this, and again, as Tami mentioned, FDA hasn’t cleared any specific drugs for Florida to import yet; each drug product still is going to have to go through a bunch of steps to get that OK. So by the time they do all of that, it doesn’t look like it’s going to save very much money. Florida’s estimating maybe not quite $200 million for the first year and about the same the second year. If you look at just their Medicaid spending in a year on outpatient drugs, it’s like $1.-something billion. So you can see how tiny a savings that is.

Rovner: Yes. This is one of those things that’s not been partisan. It’s always been sort of the FDA wanting to protect the integrity of the supply chain, whether it’s controlled by Democrats or Republicans versus Democrats and Republicans who would like to find a way to help their constituents get cheaper drugs.

Luhby: One thing also to note that’s going to be interesting, because there’ve been so many people involved in this, we saw Ron DeSantis say yesterday at the debate that he took credit for pushing the federal government and beating the federal government, I think he said, to be allowed to import drugs. But this is also going to be a talking point that Trump and Biden will also be able to say on the campaign. So basically, everyone is probably going to try to take credit for this.

Rovner: Right. Everybody’s going to take credit for something that’s probably only going to happen in a very small way, if it happens at all.

Luhby: If it all happens at all.

Rovner: That’s right. Well, also this week, drug maker Eli Lilly said it is setting up its own telehealth service to help patients access not only its soon-to-be blockbuster weight loss drug Zepbound but also other diabetes and migraine drugs, basically cutting out the doctor or at least cutting out the patient’s regular doctor, if they have one. Sarah, this feels to me like a really big sea change. Is the FDA going to let this happen? Is the AMA going to let this happen?

Karlin-Smith: It’s really interesting. I think the first headline of it makes it seem a little bit more extreme or maybe novel than once you actually look into the details because Lilly’s …

Rovner: Kind of like drug importation.

Karlin-Smith: Right. Although I think more patients maybe will actually be served by this program. But, basically, Eli Lilly is setting up a website that will then connect patients to outside telehealth companies that have the ability to prescribe the drug. Again, these telehealth companies are supposedly prescribing all different drugs, not just Eli Lilly products. The doctor’s supposed to make sure you actually qualify for the product, and so forth. And then Lilly also seems to have developed partnerships with a couple online pharmacy companies that could then directly mail you the product. So Eli Lilly is sort of helping facilitate these connections for patients. But I think probably to avoid various scrutinies by the federal government, they’ve tried to disconnect themselves a few steps, but certainly make the process of getting a drug and their drug easier for patients. Also helping ease the process of getting any copay support or coupons the company offers. So they seem to be kind of taking advantage of a trend that we’ve seen in other areas, with ADHD, like male sexual health products, and so forth, of people wanting to do this through telehealth. And so they’re trying to, I think, get at least a cut of it or at least help steer their product there. But there’s definitely going to be questions, I think, around how you handle advertising and other things for the government to look at.

Rovner: Yeah, it’s definitely a space that, now, we’re going to have to start watching as well as everything else. All right. Well, now it is time for “This Week in Health Misinformation,” which is going to Olympic gold medalist gymnast Mary Lou Retton. Retton, who is now in her mid-50s, contracted a rare form of pneumonia, ended up in the hospital for a month, and became the subject of a crowdfunding effort launched by her daughter because she didn’t have health insurance. Retton, who has been very closed-mouthed about her illness and what happened to the half a million dollars the crowdfunding campaign raised, as is her right, did do an interview this week with the “Today” show on NBC in which she said she couldn’t afford health insurance because her preexisting conditions made it too expensive. For the record, if you’re uninsured, you can still sign up for an Affordable Care Act Plan in most states, and you can’t be charged more due to preexisting conditions. And there are still extra subsidies that we talked about earlier that were implemented during covid that makes insurance even more affordable. Why is it that people don’t know this yet?

Ollstein: Well, as we saw with record-breaking enrollment, a lot of people do know it, but the people who don’t are still loud.

Rovner: We’re 10 years into the ACA!

Ollstein: Yes. It’s funny. I mean, living in D.C. and doing this work, I always try to think about what of all of our reporting actually breaks through around the country. And it’s always interesting to see what does and what doesn’t.

Rovner: I used to stomp around the NPR newsroom when the ACA was just getting up and running, saying, “It is not my job to do the administration’s publicity. It’s really not my job.” But …

Luhby: Yeah.

Rovner: … they are still working on it.

Luhby: It also may be selective ignorance, because I’m sure if she actually asked anyone about health insurance or called any agent or insurer and said, “Well, I have this preexisting condition,” they may have said, “Well, on the ACA, it doesn’t matter anymore.”

Rovner: Yes. And that if she said she didn’t have the money after her divorce, it’s like those are the people who are eligible for big subsidies. All right. Well, that is this week’s news. Now, we will play my interview with AMA President Jesse Ehrenfeld, and then we will come back and do our extra credits.

I am pleased to welcome to the podcast, in person here in our D.C. studio, Dr. Jesse Ehrenfeld, president of the American Medical Association. Dr. Ehrenfeld is an anesthesiologist, medical school professor, researcher on medical information technology, and director of a statewide health philanthropy in Wisconsin, among other activities. He’s an Afghanistan combat veteran twice over, as well as the first openly gay president of the AMA and a national advocate for LGBTQ+ rights. Dr. Ehrenfeld, thank you so much for coming in. You are a very busy person.

Jesse Ehrenfeld: Well, thanks for having me. It’s great to talk to you today.

Rovner: So I want to start on Capitol Hill, since we’re here in D.C.

Ehrenfeld: Sure.

Rovner: And Congress is coming back and working on a budget, or so we hear.

Ehrenfeld: We hope they’re working.

Rovner: I know physicians are facing, again, a cut in Medicare pay, but that’s not the only AMA priority here in Washington at the moment, right?

Ehrenfeld: Well, it’s a big one for us. And, you know, it’s really painful that you turn the clock back, Jan. 1, and 3.37% Medicare cut to physician payments. It’s unconscionable. And so we’re optimistic that we can get a fix, hopefully retroactive, as the omnibus consolidation work goes forward, short of this Jan. 19 deadline coming up. But we can’t have it. Physicians continue to struggle. My parents lost their own primary care physician because of a challenge with their primary care doctor not being able to take Medicare anymore. And what we’re seeing is more and more doctors just stopping seeing new Medicare patients, or opting out of the program entirely. So, every other provider under Medicare is actually fighting for how many increase they’re getting while doctors are getting cut. So we’re hopeful that we can solve this, but it really is something that’s just urgent for us as an association.

Rovner: I thought we took care of this in 2015. I feel like it’s Groundhog Day. I covered it every year from about 2003 to about 2015, and then we solved it briefly.

Ehrenfeld: We solved one problem and replaced it with another, unfortunately. And the doomed SGR did die in 2015 — the unsustainable “sustainable growth rate” problem — that did lead to those year-end patches. And, unfortunately now, though, because of budget neutrality rules and other — we’ll call them “features” — of the program, we’re in the situation again. We do have optimism, though, that we might get some standing inflationary updates. There was the introduction of a bill last session. And we hope that that can be something that does move forward once we get through this time-sensitive issue to deal with the 3.37% cut.

Rovner: So I feel like the physician shortage is kind of like climate change. People have been warning about it for decades, and suddenly it’s here.

Ehrenfeld: It’s here.

Rovner: With people having to wait weeks or sometimes months to see a doctor. Obviously, like with climate change, it’s going to take a while to get out of the hole that we have dug. I know we’ve seen the establishment of several new medical schools, both allopathic and osteopathic, in the past decade. How soon might we be able to see some relief, and what more will it take beyond training more doctors?

Ehrenfeld: Well, we’re opening more medical schools, but we’re not actually training more doctors. And that’s the problem. We haven’t expanded GME [Graduate Medical Education] residency programs. And unfortunately, because, as you know, GME funding through the federal government is tied to a fixed cap, set in the 1990s by Medicare, we’ve opened all these new schools and the students don’t have a place to go to train. So that’s a problem that we need to solve. We’ve had a little tiny, tiny increase these past few years, a couple of hundred spots here and there. We need thousands more training spots open. We need the GME dollars to come from Medicare. We also need to solve some of the issues around how we get international medical graduates here and ready to practice in the U.S. Twenty-five percent of practicing physicians in the U.S. were trained abroad. Most people don’t know that. We already have a huge international workforce, but we do silly things, like we’ll let an international doctor train their residency here, and then we make them go away for two years to their home country before they can come back. There are H-1B visa waiver bills that are circulating around the Conrad 30 extension. We need to do those things as well. Unfortunately, as you’re aware, immigration reform is a challenging issue here in Washington. But there are commonsense solutions that have bipartisan support. And we’re hopeful that we can get some workforce pressure reductions, not just by expanding GME for U.S.-trained individuals, but also those international graduates.

Rovner: Yeah, I feel like people forget that immigration is about more than just people coming across the southern border. There are a lot of skilled-worker issues in the immigration debate.

Ehrenfeld: In lots of industries, health care, technology, other places as well.

Rovner: I know the rise — or should I say the “re-rise” — of prior authorization requirements from insurance companies is something that contributes to physician burnout and the physician shortage by driving doctors out of practice, just from frustration. The Biden administration has a new regulation to limit prior authorization in the pipeline. Assuming that that regulation is finalized soon, how close will that come to fully addressing the problem for your members?

Ehrenfeld: You know, we hope it’ll move the needle a little bit, but we need wholesale reform, and we need to do more than Medicare Advantage plans. Unfortunately, I hear every week from colleagues who are just at their wits’ end, and it’s frustrating. I see it with my own parents. I’m an anesthesiologist. I have a habit now, I ask my patients: “So how long did it take your surgery to get scheduled?” Eh, it’s a couple weeks or a month. I said, “And how long did it take for your insurance company to approve the procedure?” And it’s months. And often what they tell me is they approved it, and then they denied it after they approved it. And they have to go through all of this rigmarole that just doesn’t make sense.

Rovner: You think that Congress is going to need to step in at some point, or is this something that can be worked out?

Ehrenfeld: I think we’re going to have to have regulatory relief from Congress, and we’re pushing for that through our grassroots network. Certainly, we try to bring all the third-party payers together. We have a set of principles that, theoretically, third-party payers have agreed to, and yet they ignore them, and they continue to just harass patients, really to improve their bottom line, but not doing what’s in their best interests.

Rovner: So I want to talk a little bit about physician autonomy. Since the overturn of Roe v. Wade, we’ve seen an increasing level of what I call legislators practicing medicine. Now we have the Supreme Court …

Ehrenfeld: It’s OK if they have an MD.

Rovner: [laughs] That’s true. Now we have the Supreme Court — none of whom have an MD as far as I know — about to decide whether doctors facing women with pregnancy emergencies should obey state abortion bans, the federal EMTALA law, or their medical ethics, all of which may conflict. What’s the AMA doing to help doctors navigate these very choppy and changing legal waters?

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

Rovner: You’re younger than I am, but when I was growing up and covering this, the AMA didn’t want to talk about abortion because it was controversial. And now, certainly in the last five or 10 years, the AMA has come out. Do you think that’s something that has dawned on the rest of the members of the AMA that this is not necessarily about abortion, this is about the ability to practice medicine?

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

Rovner: So it’s not just abortion and reproductive health where lawmakers are trying to dictate medical practice but also care for transgender kids and adults and even treatment for covid and other infectious diseases. How big a priority is this for the AMA, and what are you doing to fight the sort of “pushing against” scientific discourse?

Ehrenfeld: Well, we will always stand up for science. And it’s so important that as an association we do that. Our foundation in 1847 was to get rid of quackery and snake oil salesmen in medicine. And yet here we are trying to do some of those same things with misinformation, disinformation. And obviously, even if you look at the attack on PrEP, preexposure prophylaxis for HIV prevention — you know, an important part of the Affordable Care Act, right? Making it basically zero out-of-pocket cost for many Americans — those things are just unconscionable. We have treatments. We know that they work. We ought to make sure that patients and their physicians can have access to them.

Rovner: What about doctors who are pushing things that you know to be not helpful?

Ehrenfeld: We call them out, and we would encourage others to call them out. If somebody is trying to sell something that’s inappropriate or do something that doesn’t follow the evidence, we need to call it for what it is, which is inappropriate.

Rovner: It’s not just legislators who want to practice medicine these days. We also have the rise of artificial intelligence, which I know promises both huge advances …

Ehrenfeld: I’m real, by the way.

Rovner: [both laugh] Yes, I can attest that you’re real. At least you seem real. But, obviously, our artificial intelligence can portend huge advances and also other issues, not all of which are good. How is the AMA trying to push the AMA more towards the former, the good things, and less towards the latter, the unintended consequences?

Ehrenfeld: Well, we’re really excited about it. I’m excited about it. I have an informatics background. So, you know, I believe that there is so much power that these technologies and tools can bring, but we need to make sure that the technology is an asset, not a burden. And we have all lived through the painful rollout of electronic health records where that just was not the case. So we did survey — we do routine surveys, data that’s a nationally representative sample — in August of this year, it’s on our website. An equal number of physicians are excited about AI as they are terrified about AI, anxious, concerned, right? And we need to make sure that we have the right regulatory framework. We’re very appreciative of the ONC [Office of the National Coordinator for Health Information Technology] rule that came out, out of HHS [the Department of Health and Human Services], at the end of last year. Certainly, the Biden administration’s, whole of government’s approach we think is important, but that is no substitution for regulation. And we need to make sure that we have appropriate regulation. The FDA doesn’t have the framework that they need. The system set up in the ’60s and ’70s for drugs and biologics and devices hasn’t held up. So we know that there have to be changes. We just need to make sure that those changes only let safe and effective algorithms, AI tools, AI-powered products come to the marketplace.

Rovner: Dr. Ehrenfeld, that’s all the time we have. Thank you so much for joining us.

Ehrenfeld: Oh, thanks for having me. It’s been a treat.

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. Tami, why don’t you go first this week?

Luhby: OK. Well, my extra credit is titled “Most People Dropped in Medicaid ‘Unwinding’ Never Tried to Renew Coverage, Utah Finds,” by KFF Health News’ Phil Galewitz. And as many of our podcast listeners know, states are reviewing the eligibility of their residents in Medicaid and terminating the coverage of those they deem ineligible. Roughly 14.4 million people have been disenrolled. And the big question is, what has happened to them? Did they return to Medicaid? Did they find coverage elsewhere, or did they become uninsured? And that’s the question that many actually Medicaid directors have been unable to answer.

So Phil’s story looks at a first-of-its-kind study conducted in October by Utah’s Medicaid agency. And in Utah, 94% of those disenrolled were dropped for procedural reasons, such as not returning their paperwork, rather than being deemed ineligible. And the study found that 57% of respondents did not attempt to renew their Medicaid coverage. Thirty-nine percent shifted to employer plans, and 15% signed up for Affordable Care Act coverage. So they remained insured, but 30% became uninsured. The story also shows that many Medicaid enrollees said that they had trouble reapplying for Medicaid coverage. They didn’t get the documents. They didn’t have the necessary paperwork. They couldn’t get their questions answered. And these are all things that we’ve heard about anecdotally, but the Utah study and Phil’s story actually put some numbers to it. And interestingly, Utah officials also confirmed that the U.S. Department of Health and Human Services is conducting two audits of the state’s Medicaid unwinding. So we’ll see what happens and what we find out from Utah may inform us about what’s happening in the rest of the country.

Rovner: Yes, we have noted before that HHS has been very close-mouthed about how it is trying to get states to maintain coverage for these people who are, if not eligible for Medicaid anymore, eligible for something else. Alice, you have kind of a related story, so why don’t you go next?

Ollstein: Yeah, I have something from our own Rachel Cohrs at Stat. It’s called “Texas Taxpayers Wanted to Help the Poor Get Health Care. Instead They’re Funding a Medical School at a Wealthy University.” It’s a great accountability story about how taxpayers were convinced to put up tens of millions of dollars that they thought was going to provide care for very poor people in the area around Austin, Texas. And instead, basically, none of that money is going to … directly to provide that care to people. And instead, it’s gone to build fancy buildings at this medical school, and overhead, and recruiting faculty. And the school and hospital insist that all of this trickles down eventually to patients. But it’s not what taxpayers feel they were promised. And so they’re getting upset about that.

Rovner: It is a very nice medical school. Sarah.

Karlin-Smith: I looked at a New York Times story from Christina Jewett and Benjamin Mueller, “The F.D.A. Warned an Asthma Drug Could Induce Despair. Many Were Never Told,” and it’s about Singulair, a now generic asthma medicine. Over 20 years after it was first approved, FDA added what’s known as its strictest warning, a black box warning, warning of very serious mental health side effects, including suicidal thoughts. And The New York Times investigation seems to have found out that really these messages are not reaching doctors. They’re not reaching patients, or parents, and many young kids who are taking this medicine. And that has led to many ill effects, including some very young people who have died by suicide. And it’s a really good dive into the challenges that FDA faces and kind of translating their regulatory action into something that then gets communicated to a doctor, and then a doctor translates to a patient. In many ways, it’s not that surprising a story to me because I think it’s kind of well known that not a lot of people read drug labels and then certainly not on an individual level, but even on a doctor level. And I think a lot of the risk-benefit conversations that FDA envisions happen between doctors and patients before people take drugs don’t actually happen in the real world. I once actually had a doctor who told me, “This medicine has a box warning, but don’t worry about it.” Which I always find as a pretty funny story as a drug reporter. And it just also raises a lot of issues, this story, about how drugs are studied on children and what’s done to make sure that as a drug goes generic, the safety is still being monitored, and somebody is responsible again for ensuring people are aware of new safety updates. So it’s a really good dive. I think the thing I was most struck by, though, is I think the solutions perhaps here are not ones that would be very popular in the U.S., which is that by design, the FDA does not regulate the practice of medicine. And, in most cases, I don’t think Americans would want FDA pushing the boundaries much further to get at the safety hurdles this story maybe flags.

Rovner: Yeah. More along our theme of the federal government and its role in society. Well, my extra credit this week is actually a collection of stories. It’s sparked by the headline on this month’s issue of Consumer Reports, which is “How to Eat Less Plastic.” The first story is from CNN reporting on a study in the proceedings of the National Academy of Sciences called “Bottled Water Contains Thousands of Nanoplastics So Small They Can Invade the Body’s Cells, Study Says.” And it basically says that plastic sheds just like skin cells do. So anything you eat or drink that’s stored or wrapped in plastic is going to get into whatever it is you’re putting into your body. If that’s not enough to give you pause, my second story is from ScienceAlert, which is a website, called “It Turns Out Paper Straws Might Pose a Serious Problem Too.” And it’s about a study that found that many paper straws contain those forever chemicals we keep hearing about, called PFAS, which, of course, are also in many plastics. Finally, if that’s not enough plastic for you, here’s a story from The Washington Post called “How Plastic Hides in Supposedly Eco-Friendly Laundry Products.” Basically, those laundry sheets that can replace the use of all those plastic bottles that we keep seeing ads for? Apparently, even many of those sheets that claim to be, quote, “plastic-free” contains something called polyvinyl alcohol, which is, you guessed it, a plastic that’s been found in drinking water and breast milk. I think the message here is everything you do is probably bad for you in some way, so be humble and do the best you can.

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, my fellow happy Michigan Wolverine this week, Emmarie Huetteman. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X, @jrovner, or @julierovner at Bluesky and @julie.rovner at Threads. Sarah, where are you these days?

Karlin-Smith: I’m trying to be places, but then it’s hard to be at all of them. So mostly Twitter and Bluesky, @SarahKarlin or @sarahkarlin-smith.

Rovner: Tami?

Luhby: The best place to find me is cnn.com.

Rovner: There you go. Alice.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This article is not available for syndication due to republishing restrictions. If you have questions about the availability of this or other content for republication, please contact NewsWeb@kff.org.

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CAIRO, Ga. — Zita Magloire carefully adjusted a soft measuring tape across Kenadie Evans’ pregnant belly.

Determining a baby’s size during a 28-week obstetrical visit is routine. But Magloire, a family physician trained in obstetrics, knows that finding the mother’s uterus and, thus, checking the baby, can be tricky for inexperienced doctors.

“Sometimes it’s, like, off to the side,” Magloire said, showing a visiting medical student how to press down firmly and complete the hands-on exam. She moved her finger slightly to calculate the fetus’s height: “There she is, right here.”

Evans smiled and later said Magloire made her “comfortable.”

The 21-year-old had recently relocated from Louisiana to southeastern Georgia, two states where both maternal and infant mortality are persistently high. She moved in with her mother and grandfather near Cairo, an agricultural community where the hospital has a busy labor and delivery unit. Magloire and other doctors at the local clinic where she works deliver hundreds of babies there each year.

Scenes like the one between Evans and Magloire regularly play out in this rural corner of Georgia despite grim realities mothers and babies face nationwide. Maternal deaths keep rising, with Black and Indigenous mothers most at risk; the number of babies who died before their 1st birthday climbed last year; and more than half of all rural counties in the United States have no hospital services for delivering babies, increasing travel time for parents-to-be and causing declines in prenatal care.

There are many reasons labor and delivery units close, including high operating costs, declining populations, low Medicaid reimbursement rates, and staffing shortages. Family medicine physicians still provide the majority of labor and delivery care in rural America, but few new doctors recruited to less populated areas offer obstetrics care, partly because they don’t want to be on call 24/7. Now, with rural America hemorrhaging health care providers, the federal government is investing dollars and attention to increase the ranks.

“Obviously the crisis is here,” said Hana Hinkle, executive director of the Rural Training Track Collaborative, which works with more than 70 rural residency training programs. Federal grants have boosted training programs in recent years, Hinkle said.

In July, the Department of Health and Human Services announced a nearly $11 million investment in new rural programs, including family medicine residencies that focus on obstetrical training.

Nationwide, a declining number of primary care doctors — internal and family medicine — has made it difficult for patients to book appointments and, in some cases, find a doctor at all. In rural America, training family medicine doctors in obstetrics can be more daunting because of low government reimbursement and increasing medical liability costs, said Hinkle, who is also assistant dean of Rural Health Professions at the University of Illinois College of Medicine in Rockford.

In the 1980s, about 43% of general family physicians who completed their residencies were trained in obstetrics. In 2021, the American Academy of Family Physicians’ annual practice profile survey found that 15% of respondents had practiced obstetrics.

Yet family doctors, who also provide the full spectrum of primary care services, are “the backbone of rural deliveries,” said Julie Wood, a doctor and senior vice president of research, science, and health of the public at the AAFP.

In a survey of 216 rural hospitals in 10 states, family practice doctors delivered babies in 67% of the hospitals, and at 27% of the hospitals they were the only ones who delivered babies. The data counted babies delivered from 2013 to 2017. And, the authors found, if those family physicians hadn’t been there, many patients would have driven an average of 86 miles round-trip for care.

Mark Deutchman, the report’s lead author, said he was “on call for 12 years” when he worked in a town of 2,000 residents in rural Washington. Clarifying that he was exaggerating, Deutchman explained that he was one of just two local doctors who performed cesarean sections. He said the best way to ensure family physicians can bolster obstetric units is to make sure they work as part of a team to prevent burnout, rather than as solo do-it-all doctors of old.

There needs to be a core group of physicians, nurses, and a supportive hospital administration to share the workload “so that somebody isn’t on call 365 days a year,” said Deutchman, who is also associate dean for rural health at the University of Colorado Anschutz Medical Campus School of Medicine. The school’s College of Nursing received a $2 million federal grant this fall to train midwives to work in rural areas of Colorado.

Nationwide, teams of providers are ensuring rural obstetric units stay busy. In Lakin, Kansas, Drew Miller works with five other family physicians and a physician assistant who has done an obstetrical fellowship. Together, they deliver about 340 babies a year, up from just over 100 annually when Miller first moved there in 2010. Word-of-mouth and two nearby obstetric unit closures have increased their deliveries. Miller said he has seen friends and partners “from surrounding communities stop delivering just from sheer burnout.”

In Galesburg, Illinois, Annevay Conlee has watched four nearby obstetric units close since 2012, forcing some pregnant people to drive up to an hour and a half for care. Conlee is a practicing family medicine doctor and medical director overseeing four rural areas with a team of OB-GYNs, family physicians, and a nurse-midwife. “There’s no longer the ability to be on 24/7 call for your women to deliver,” Conlee said. “There needs to be a little more harmony when recruiting in to really support a team of physicians and midwives.”

In Cairo, Magloire said practicing obstetrics is “just essential care.” In fact, pregnancy care represents just a slice of her patient visits in this Georgia town of about 10,000 people. On a recent morning, Magloire’s patients included two pregnant people as well as a teen concerned about hip pain and an ecstatic 47-year-old who celebrated losing weight.

Cairo Medical Care, an independent clinic situated across the street from the 60-bed Archbold Grady hospital, is in a community best known for its peanut crops and as the birthplace of baseball legend Jackie Robinson. The historical downtown has brick-accented streets and the oldest movie theater in Georgia, and a corner of the library is dedicated to local history.

The clinic’s six doctors, who are a mix of family medicine practitioners, like Magloire, and obstetrician-gynecologists, pull in patients from the surrounding counties and together deliver nearly 300 babies at the hospital each year.

Deanna Buckins, a 36-year-old mother of four boys, said she was relieved when she found “Dr. Z” because she “completely changed our lives.”

“She actually listens to me and accepts my decisions instead of pushing things upon me,” said Buckins, as she held her 3-week-old son, whom Magloire had delivered. Years earlier, Magloire helped diagnose one of Buckins’ older children with autism and built trust with the family.

“Say I go in with one kid; before we leave, we’ve talked about every single kid on how they’re doing and, you know, getting caught up with life,” Buckins said.

Magloire grew up in Tallahassee, Florida, and did her residency in rural Kansas. The smallness of Cairo, she said, allows her to see patients as they grow — chatting up the kids when the mothers or siblings come for appointments.

“She’s very friendly,” Evans said of Magloire. Evans, whose first child was delivered by an OB-GYN, said she was nervous about finding the right doctor. The kind of specialist her doctor was didn’t matter as much as being with “someone who cares,” she said.

As a primary care doctor, Magloire can care for Evans and her children for years to come.

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 this episode of “An Arm and a Leg,” Dan Weissmann goes toe-to-toe with Scott Purcell, CEO of ACA International, a trade association for the collection industry, on the effects these lawsuits have on patients.

With help from The Baltimore Banner and Scripps News, Weissmann pulls back the curtain on hospital bill lawsuits in three states — Maryland, Wisconsin, and New York — and discovers some good news for a change.

Dan Weissmann

@danweissmann

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

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Transcript: ‘An Arm and a Leg’: When Hospitals Sue Patients (Part 2)

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 part two of a two-part story. If you missed part one, or just want a refresher, here’s three quick things: 

First: Some hospitals – definitely not all – sue a LOT of patients over unpaid bills. Hundreds or even thousands every year. 

Second: There’s very little money in it for these hospitals. When reporters and researchers add up the total amounts they’re suing for, it looks tiny compared to, say, their annual surplus. Or what they pay executives. Tiny.

Third: There’s data showing a LOT of the people being sued are … pretty hard up already. 

That a lot of them would qualify for charity care under the hospitals’ own financial-assistance policies.

In fact, as we reported last time, a guy named Nick McLaughlin, who spent a decade working for a medical-bill collections agency… now runs a business telling hospitals they’d be better off – financially – writing these bills off through charity care or financial assistance programs. 

And I should point out: Nick’s not a do-good crusader. He has started a business, to help hospitals do this. And he’s staked his family’s financial future on it.

Nick: I had a good but challenging conversation with my wife. And she said, hey, so is the reason we’re not doing this full time because we’re scared the money’s not gonna come in? And I said, well as the sole provider of a family of five that’s kind of a big deal. She said, yeah, I think we should do it.

Dan: And at the end of our last episode, I asked Nick: So, why would some hospitals make the decision to sue people, if there’s no money in it? What’s behind that decision:

Nick: It’s really, I would say, philosophically based.

Dan: So, in this episode, we’ll do two things: One, we’ll try to get a peek at that philosophy – inside the heads of the people who might hold it.

And TWO: We’re gonna share some hard data about what’s going on with these lawsuits in three states. We partnered with two awesome news organizations to get this data. 

And I’m gonna tell you: we found what really looks like some good news.

And the whole inquiry really drove home ways we can help ourselves, and each other. 

Here we go.

With Scripps News and the Baltimore Banner, this is An Arm and a Leg – a show about why health care costs so freaking much, and what we can may be 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, let’s talk about that philosophy. You could call it a form of… not thinking too hard. Let’s start with a witness. 

These days, Ruth Lande works for a nonprofit you may have heard of – RIP Medical Debt – to get hospital bills forgiven.

But WE talked with her because she spent more than 25 years working in hospital billing, most of it at Memorial Sloan-Kettering Cancer Center. And by the way, she loved it.

Ruth Landé: In general, I think it’s good if a job has three things. It’s for a good mission. Two, it should be hard. It should be complicated so it engages your brain every day. And third, it should be with really good colleagues. And I got to tell you, working revenue cycle satisfied all three of those for me. 

Dan: And of course, during her quarter-century in the business, the question of whether or not to file lawsuits over hospital bills did come up. 

When she got a promotion. 

In her earlier role, she’d run one part of the billing department, where they never sued. Now she was taking over another part of the billing department, a bigger one, where sometimes they did. 

She says her new colleagues were aware that in her earlier position, she’d taken a no-lawsuits approach.

Ruth Landé: There was an assumption, oh yeah, Ruth won’t allow that. 

Dan: But, she told me, she didn’t want to be in conflict with her new colleagues from Day One. 

Ruth Landé: And so I said, well, I’m not going to just ban it, but you know, bring me cases. If you believe that we should be suing a person, then just bring me the case so I can review it. And they never brought a case to me ever. 

Dan: Never ever. She thinks those colleagues maybe hadn’t stopped to look at who they were suing.

Ruth Landé: When you really examine closely you see the harm. I They would have probably imagined that they’re only suing some really rich people sitting up in a mansion somewhere, not bothering to pay their bills.

You might imagine: It would be interesting to talk with someone who thinks this way – really talk with them, push them on their point of view.

And that did happen. Kind of. 

It was honestly one of the most confusing conversations I’ve ever had. It was with this guy. 

Scott Purcell: My name is Scott Purcell. I’m the CEO of ACA International.

Dan: That’s the industry association for folks in the bill-collection business. Scott was super-accommodating – got on Zoom with me within a day of my first email to him. So quickly that it wasn’t till we got on that I realized we hadn’t set a length. 

Dan: How long do I actually have you for?

Scott Purcell: How long do you need us for?

Dan: Uh, I like to talk to people for a long time, but we start with a half an hour and maybe…

Scott Purcell: um, bum bum bum. I just need to change one meeting. 

Dan: We talked for more than an hour. 

The first half-hour was one kind of frustrating. 

I’d describe our findings and findings from other people’s reports — for instance, how little money hospitals seem to gain from these lawsuits — and ask if he had data to help understand what we’re seeing, and he kept saying, effectively: 

Hey, let’s not jump to policy conclusions. How would a new policy on debt collection affect a medical office with just three doctors? 

Scott Purcell: And I would say that three person doctor office is different from one of the top 10 nonprofit health care system. Their economics are completely different. And yet we’re talking about policy positions. that impact both

Dan: And then, in retrospect I’ve figured out a spot where we really, really lost each other. I was talking about one observer’s take on why these lawsuits don’t bring in much money:

Dan: A lot of the people that end up as your defendants are effectively indigent. Um, you know, they don’t have a lot of income. They may not have W2 employment that you could garnish. They don’t have other assets you can take. So, the amount that you get is not, not what you might expect from looking at the number of cases and the number of judgments. So that was another…

Scott Purcell: If I could stop you there, I’d love to see that data. Do you know that it takes a lot of money to file a lawsuit? I can’t think. And so my lived experience, I cannot think of one instance where either the hospital or the collection agency or the attorney would choose to sue an indigent person because if they are going to have a low probability of being able to repay that that over time, why would you invest? 

Dan: What I didn’t realize then, was: when I said some people were “effectively indigent,” Scott Purcell had latched onto the word “indigent” and had a very specific image in his mind, of absolute destitution. From that point forward, anything I would say about people being sued who were hard up, who qualified for charity care, who really couldn’t pay – was gonna run through this filter. 

And: Any example I’d bring up of someone being sued who got put in an extremely tough position… was just gonna sound to him like a novel anecdote.

A half-hour in, I got pretty direct with Scott, so I asked:

Dan: How did this happen? How did it happen that we, like, got to the point where so many people are being sued over debts they can’t pay? What do you know about that?

And this is where things got really confusing to me. Because here’s how Scott responded:

Scott Purcell: Well, if you just sued somebody who can’t pay, they’re not going to pay you. So, they’re not out any money. So you made a bad business decision, but truly Dan, what is the harm they’re experiencing? The fact that they got sued and they can’t pay?

Dan: I didn’t see that coming – the idea that being sued could be “harmless”?. Here’s what I said:

My gosh. Well, I can tell you that, you know, people, by the time they’ve been sued, they’ve been getting tons of collections calls, their credit may have suffered, and they have a judgment against them that says like any money that shows up in their bank account can be seized or that, you know, the next time they get a job, their wages can be garnished. That’s pretty significant harm. 

I described to Scott the story of Liz Jurado, a woman on Long Island who says she found out, years after the fact, that she had been sued over a bill relating to the birth of one of her kids. A bill she says she thought insurance had paid. Her husband was the main breadwinner, until he got laid off. Liz took a job working for DoorDash to support the family – her first W2 paycheck – and she says that’s how she found out about the lawsuit. Because once she starts the job, she starts getting letters, saying her wages are going to be garnished. And she’s like:

Liz Jurado: What is this? Where did it come from? How could they not tell me about it until now?  I get a job and three months later, you’re coming after me. I mean, this is my family’s bread and butter.  This is horrible.

Dan: I said to Scott: That seems bad, right?

Dan: So I’m, I’m, I’m trying to give you the opportunity to respond to that point that lots of people make that. If you get sued over a debt you can’t pay, there’s harm. That’s, that’s a lot of people’s positions, and I find it fairly persuasive. How do you respond to that? 

Scott Purcell: You and I were using a hypothetical. You said somebody got sued who’s indigent. Has no money.

Dan: Do you think that doesn’t happen?

Scott Purcell: I don’t understand the business case as to why that would. 

Dan: But, like, do you think it doesn’t happen because, like, do you think the reports that show that it happens a lot are wrong? I mean, I talked to a couple, a couple months ago who got sued over a debt. I mean, their story was like, they got hit with a bunch of medical problems.

I described to him the story of Casey and Ron Gasior, who we met in our last episode. The bills for those medical adventures threw their finances completely out of whack.

Casey: We would dig little bit out of our hole, and then we’d go right back down. 

Dan: … until they were in danger of losing their house. They filed for chapter 13 bankruptcy – wrapping everything they owed into a five year payment plan. They’d just about made it through, when they got a letter from a law firm earlier this year: They were being sued over a medical bill, that had arrived just after their bankruptcy started. I was getting a little worked up. 

Dan: So, these are not hypothetical, and these are not, like, you know, these stories are just entirely consistent with the data that, that gets collected. So, when you ask me, like, what’s the harm? I want to give you this opportunity to say, like, you sure that’s your position?

Scott Purcell: So, first of all, that was on a different, that was a different question. I made an assumption of that story that they were indigent now and would be indigent – I was saying, I don’t know why that decision got made if indeed that person, um, is indigent, why a particular, um, provider has whatever parameters they’ve set for their lawsuit program. I can’t speak to the business decisions they’re making. I can speak to, societally, what do we expect people to pay and not pay? 

Dan: With the case of the couple in Wisconsin, if they couldn’t pay ever, if their chapter 13 hadn’t worked out, and they’d lost their house, and they’d lost their jobs, and they couldn’t pay ever, are you saying they wouldn’t be harmed?

Scott Purcell: I’m saying the answer lies in taking those stories to the table. And let’s take a look at what are the other policy changes that should be made in order to get better outcomes. So, in the situation you did outline, I am sure that individual actually went through emotional stress. But there’re safeguards throughout. 

Dan: So you’re saying you view this as a kind of exceptional case and that generally there are, from what you know, guidelines and guardrails, as you say, to prevent this sort of thing from happening.

Scott Purcell: It’s the thing I don’t have data to answer it. 

Dan: Yeah, it’s — I mean, I just need to say: It’s striking, um, that you asked — you’re, yeah, like: Where’s, where’s the harm?

Scott Purcell: I made an assumption of that story that they were indigent now and would be indigent–

Dan: Well, I guess I just don’t understand, I, I don’t really quite understand the difference. Can you explain the distinction between someone being indigent right now, being indigent forever, I don’t really get the distinction at all. And I don’t know in which case, in which case there is harm, in which case there isn’t in your view.

Scott Purcell: So, um, I wasn’t being flippant. I was taking a very extreme… um, I’m in D.C. I see homeless people now. So when I heard you say indigent, I’m thinking somebody who’s living under a bridge. They deserve to be treated with dignity and respect. I was thinking that level of indigency. You’re talking about, I think, the, the working class, and people beyond that. And up to the higher end scale is your question. And for that, my question or my answer is back to there are safeguards that should be occurring. And if those safeguards don’t occur, harm does happen. And we collectively need to look at why there are gaps in those safeguards.

Dan: So in retrospect – knowing how Scott Purcell took that word indigent – I’m a little less mystified. But the conversation still seems really… striking to me.

For one thing, there’s the idea — even if it’s not a conscious philosophy  — that some people are beyond hope, so they’re beyond harm. So morally, it wouldn’t matter if, say, you sued them.

But the other thing that strikes me is the difficulty Scott Purcell had understanding – believing – that people being really harmed is something that happens at scale. That last thing he said: “There are safeguards that should be occurring, and IF those safeguards don’t occur, harm does happen.”

That word “IF” seems to be doing a lot of work there. 

Beyond the mountains of data that folks have compiled – showing that people get sued who qualify for charity care, and that people who get sued over medical bills tend to live in neighborhoods where poverty is high – there’s the finding that’s practically a cliche: 

About four out of ten Americans don’t have enough money on hand to cover a 400 hundred dollar emergency expense. Maybe I should have explained that to Scott Purcell. 

But I just didn’t think I’d need to. He’s sitting atop a whole industry that NEEDS to know, basically, how much money people have. Since we talked, I’ve seen a report for folks in his industry – third-party collections – that goes into a lot of detail on that topic. 

Of course, third-party collections agencies are for-profit businesses. And at least for some of them, lawsuits like these are part of the business. 

So, I guess I’m starting to understand – maybe belatedly – how hard it is to get some people to reconsider business as usual. Is business as usual a philosophy?

But sometimes business as usual does change. In fact, I’m about to share some much more cheerful news with you. It’s what our partners found when we went looking for details on these hospital bill lawsuits in three states. 

Because the big surprise was in what we DIDN’T find.

That’s coming right up. 

This episode is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health care in America. Their incredible journalists win all kinds of awards every year. I’m so glad to get to work with them. 

This investigation builds directly on reporting by KFF reporters like Jay Hancock, Noam Levey and Jordan Rau. Respect. 

OK, so this whole inquiry — into why some hospitals sue so many patients who could just get charity care — started a couple of years ago. 

That’s when I spotted what looked like a clue – in a big report done by National Nurses United. It looked at 145 thousand hospital lawsuits against patients in Maryland over a ten-year period.

And in addition to documenting how little money hospitals were getting from these suits — compared to the million-dollar salaries they paid a lot of executives — 

This report also noted– just kind of by-the-way, on page 18 of a 68-page report – that a relatively small number of attorneys were filing most of these lawsuits.

Just five attorneys filed almost two-thirds of the cases.

And just one attorney filed more than 40,000 cases. 

I was like, huh! Maybe that’s a clue. 

It seems like hospitals don’t get a lot of benefit from these lawsuits. But maybe we’re looking at someone who does. We should find out more. 

Starting with the names of those lawyers, which weren’t in the report.

And I was gonna want a big update on Maryland.

That report was part of a big advocacy campaign – which really worked. 

In 2021, Maryland enacted a new law saying hospitals couldn’t sue anybody without checking to see if they qualified for free care.

Which in retrospect, may seem like an obvious requirement. Here’s Malcolm Heflin, one of the organizers who worked on the campaign.

Malcolm Heflin: It’s like reading the postscript in a Dickens novel almost. It’d be like, “Oh yeah. Hey, look, now we can’t chain children to factory machines.” Like what? Wait, what? That was legal before? 

Dan: Anyway, if that report was the “before” picture, what would “after” look like? I was gonna need help. And I got some.

Ryan Little: my name is Ryan Little and I am the data editor at the Baltimore Banner.

Dan: The Banner is a new nonprofit daily newspaper – without the paper. Data reporting is a big specialty, and Ryan is the big specialist. Pulling a LOT of Maryland courts data was already on his to-do list.

Ryan Little: And so I said, maybe there’s a way that we can make a partnership happen. And then many months later, you’ve probably regretted that, but we’ve had a good time doing it. Anyways…

Dan: No way. Are you kidding me?

Ryan’s amazing. I am so lucky to get to work with him. 

But I wanted to know about more than just Maryland. And I got lucky there too. 

Maryland’s not the only state where advocates compiled a bunch of court data to push for change. You might remember Elisabeth Benjamin in New York from our last episode. 

She’s the one who pointed out how little money is involved in these suits – for hospitals she has looked at.

Elisabeth Benjamin: They’re suing people for pennies. right. The average law suits maybe 1900 bucks. So they’re suing them for chump change, but that $1,900 is like life ruining for the patient.

Dan: She knew that because she had pulled more than 50 thousand hospital-bill lawsuits from across the state. She used that data in a series of reports that got new laws passed – like one banning wage garnishment to pay medical debts. 

And she shared a giant spreadsheet with me, which included the names of attorneys in 40 thousand cases.

And guess what? Just three law firms handled the majority of those cases. So now we knew: This wasn’t just a Maryland thing.

But we were gonna want to look somewhere else too. Someplace where no new laws had been passed. Someplace that was still a “before” picture. Someplace like Wisconsin.

I’d been getting reports from a public-interest lawyer there named Bobby Peterson. He’d been publishing some data about lawsuits, but hadn’t gotten laws passed. And he also wasn’t able to share data. I was gonna need MORE help. 

Rosie Cima: My name is Rosie Cima and I manage a data reporting team at Scripps News. I also report for them. 

Dan: YES! More data help. Scripps News came aboard as a partner, and Rosie started looking for the data we’d need in Wisconsin.

And at this point, it may be getting clearer why it has taken us more than a year to bring this story to you. Let’s just recap for a second all the moving parts we’ve got in play here:

We’ve got Ryan, pulling cases in Maryland, Rosie doing the same in Wisconsin, and me with some New York cases.

We’re looking to see what the “after” picture looks like in Maryland and New York, and we’re looking at the role of a few lawyers.

And this is where I admit: that initial hypothesis? That the lawyers were driving these lawsuits, sweet-talking hospitals to drum up business?

It didn’t really pan out. As far as I can tell, after talking with a bunch of people and looking at a bunch of reports, it doesn’t seem to work that way. 

A lot of the time, anyway, it seems like the lawyers are often freelancers. They get hired by the collection agencies.

Who get their marching orders from the hospital revenue office.

But I’m so glad we went looking, because of what we did find. 

Or, you could say, what we didn’t.

In Maryland, Ryan spent months and months and months collecting hundreds of thousands of cases, then weeks and weeks crunching the numbers. And then… 

Ryan Little: On Wednesday, September 6th, I sent this email. I find this hard to believe. But it may be that there were zero medical debt lawsuits filed by hospitals against individuals in 2022 and 2023. 

Dan: He found it hard to believe – like, it must be wrong – so he went back to try to find his mistake. That took almost a week.

Ryan Little: On Monday, September 11th, I emailed, Hey Dan, news that hospital debt collection lawsuits had ended in Maryland was wrong. It looks like the Maryland Judiciary is somehow suppressing them in case search. Either intentionally or not, I’m rewriting the code to account for this.

Dan: He thought the Maryland court system was HIDING these cases. Not only did he rewrite the code, he went to the courthouse to go hunt for whatever was missing. 

It took him another week. And then I got one more email.

Ryan Little: So on September 18th, I said, Maryland hospitals are dot, dot, dot. Basically not suing anyone for medical debt anymore. 

Dan: Basically not suing anyone for medical debt this year. WOW. I mean, we had expected a significant drop– if only because Maryland had passed that 2021 law, which required hospitals to see if people were eligible for charity care before suing them. 

But zero was a much bigger drop than we’d expected. 

Next stop, New York. A few months ago, we looked at those three law firms – the ones that handled the majority of hospital-bill cases there. 

And as far as we could tell, two of them were just not doing any work for hospitals at all anymore.

But OK, again: We’d expected an “after” picture in both these states. What about Wisconsin?

Well, for one thing, it turned out to be TOUGH. 

Rosie Cima: When we took this on the first time, it definitely seemed like it’d be a lot easier than it ended up being. 

Dan: You can pull some case data from the web, but there’s a problem: Once a case has been dismissed, it gets taken off that website after a few years. 

Rosie Cima: So all the data that we had from before 2020 was missing some unknown number of cases

We can laugh about it now, but that sucked. We did find some guys who had data on older cases socked away. From them, we got the full caseloads for two lawyers we’d heard did a lot of medical-bill lawsuits.

Rosie Cima: We found more than 8000 cases in one year, um, for two lawyers, 

Dan: That was 2019. Pre-pandemic. 

Rosie Cima: And in 2022, There were fewer than 1400 for both of them.

Dan: In other words, these two lawyers were doing less than a quarter as much medical-bill business as they’d been doing three years earlier.

And Rosie pulled numbers year by year, client by client, which was super-revealing. 

Because for both of them, many of their biggest clients – hospitals and medical practices for whom they had been filing hundreds of cases a year – weren’t filing any cases.

Which wasn’t totally conclusive. We knew these lawyers were getting less work…

Rosie Cima: The thing that we didn’t know was, like, whether, Hospital A had stopped suing, or whether they just stopped hiring this lawyer.

Dan: Right. So Rosie went back to the public data website to see whether those hospitals A, B, C and so on were suing. And for the most part, they weren’t — at least not like they used to. 

Rosie Cima: Yeah, we now know that those cases weren’t going to a different lawyer. Right? They’re just not, they’re just not being filed.

Dan: Just not. Being filed. And it wasn’t just the hospitals that had been using these two lawyers that had fallen away. Other hospitals that had been suing tons of patients had cut way back. 

From more than a thousand in 2019 to a few dozen, or less than a dozen. Or one. Or zero. 

One hospital system sued more than 47 hundred people in 2019. In 2023 so far, they’ve sued one.

And remember, because older cases get wiped from the web, there’s some unknown number of cases from 2019 we aren’t seeing. The decline is probably bigger than what we see.

So, one thing to say is: We don’t know WHY this is happening. In any of these states. Our colleagues at the Baltimore Banner called every hospital in Maryland to ask about these changes, and got a bunch of no-comment. We emailed dozens of hospitals in Wisconsin and basically got the same answer.

So we’re left with some guessing – and here are some of our best guesses: 

Those new laws in New York and Maryland didn’t outlaw lawsuits… but the Maryland law made them more difficult, and the New York laws made it harder to collect. 

And the campaigns that led to those laws brought a LOT of negative attention to hospitals that filed a lot of lawsuits. So one way or another, it seems like a lot of hospitals decided it wasn’t worth it.

And in Wisconsin? Laws didn’t change, but the reports that the lawyer Bobby Peterson put out there did get some attention locally. 

We know in Wisconsin, lawsuits halted altogether for a while when the pandemic started. Maybe hospitals noticed that they weren’t exactly losing a ton of money when that happened?

Here’s one last data point from Rosie. She looked closely at the cases she had for those two lawyers from 2019. The ones where the hospital was awarded a judgment.

Rosie Cima: We found that the majority of those awards were never fulfilled, like, I, I feel like that’s important, a judge said, yes, you defendant owe this case. company, the plaintiff, this much money and in a lot of cases, the plaintiff hasn’t paid out. And it’s been years.

Dan: Which I don’t think is evidence that “Wow, these folks were really good at dodging payment!” No, because in a lot of these old cases, the judge gave an OK to garnish these folks’ wages: To take money directly from their paycheck.

So if these debts haven’t been paid, years later – and remember, these are often amounts of a thousand dollars or less – it seems like these folks may be earning so little that garnishing their wages for years doesn’t get you much. 

So, to start wrapping up: There’s a TON we don’t know. For one thing, there’s 47 other states we haven’t looked at. And we don’t know if hospitals in these three states will start suing again, when they think nobody’s looking.

But here’s something I do know: A surprising number of those other states have been passing new laws and regulations in the last couple years, to prevent hospitals from filing so many lawsuits against folks who qualify for charity care: 

Illinois, Arizona, Colorado, Minnesota, Washington, Oregon. I’m probably missing some. 

But here’s the single biggest thing I’m taking away from this whole adventure: A LOT more people qualify for charity care– free or discounted care from the hospital– than we think.

And we can help ourselves and each other, just by spreading the word.

I called Casey Gasior in Wisconsin a couple weeks ago. It wasn’t a great day for her.

Casey: Everybody in my house is sick and I just tested positive for covid. And now we’re going to lose work time.

Dan: Right.

Casey: I tell you, it never ends.

Dan: I was calling because I knew: Casey and her husband Ron have had more medical adventures this year. More knee trouble for him, emergency surgery for her, time away from work and lost income for both of them. And thousands of dollars of new medical bills. 

I said to her: It seems like maybe you and Ron might qualify to have some of those bills forgiven through charity care.

Casey: I think my, my husband makes too much. 

And I was like, well, maybe. But as we learned from Nick McLaughlin in our last episode, almost 60 percent of Americans qualify for charity care at a bunch of hospitals. 

And the nonprofit Dollar For has created a database of the charity care policies of almost every hospital in the country – and they’ve built it into their website. 

So you can type in a few details – where you were treated, how much you make – and it’ll tell you whether you’re likely to qualify for help.

Dan: So, I’m looking at their website right now.

And would it be okay with you to just kind of walk through kind of what they’re asking you, what they, um…

Casey: Yeah, sure.

Dan: Questions included: Where’d you get seen, and when?

Casey: Um, my surgery was July 24th.

Dan: Casey and I went line by line, filling out the form. I had her hunting for tax returns, and other documents

Casey: Hey, Ron. Can you send me a, um, a pay stub? Can you send me a picture of it? Like, now?

Dan: Okay. Alright, I’m going to add those up. There we go.

And yeah, so Dollar For thinks that you would qualify, 

Casey: Wow. That surprises me. 

Dan: This is good.

Casey: This is really…

Dan: Yeah. I’m really glad that we took this step.

Casey: Yeah, me too, because I was kind of, I didn’t know where to go and like, it, it seems so weird asking for charity.

Dan: But Casey was ready to take the next step.

Casey: Now this application that I’m filling out now do I have to do one for myself and one for Ron. 

Dan: Yes. Yeah. 

Casey: Okay, I’m going to work on this

Dan: Okay. Fantastic.

And this is a thing that we can do for ourselves, and each other. Spread the word: The majority of people qualify for at least some charity care – at least partially wiping out your bill – at a LOT of hospitals. 

The Dollar For website is set up to tell you if you’re likely to qualify, and to help you apply. They’ve also got actual human beings on staff to help if you get stuck.

Their website is Dollar For – that’s Dollar F-O-R dot org. Dollar F-O-R dot org. 

And that is our story. We never got all the way to the bottom of the question of WHY these bulk lawsuits happened – or why they seem to have stopped in some places – but we did get a peek into the process. 

And we learned some things that are heartening – a lot fewer lawsuits in these three states!

I’ve learned a lot more, along the way – there’ll be follow-ups. 

This has been a HUGE project for our little outfit. We got a ton of help from our partners, and we put a TON of resources into it: Travel to Wisconsin and Michigan, MONTHS of phone calls, 1600 bucks to get court records. 

We’ve been able to do that because you’ve been supporting us– giving us the resources to do the job. And this is the absolute best time to pitch in: 

Every dollar you give is matched. A few generous Arm and a Leg listeners have put up more than 10 thousand dollars in matching funds ON TOP of what the Institute for Nonprofit News does through their NewsMatch program – and I want to max it out. 

The place to go is Arm and a Leg Show, dot org, slash support. And there’s a link in the show notes – pretty much anywhere you’re listening to this. 

We’ll be back next week with a quick little coda to this story.

Meanwhile, thank you so much for helping us make this show. I’m gonna give that address one more time: Arm and a Leg show dot com, slash support. 

I’ll catch you next week.

Till then, take care of yourself.

This episode of An Arm and a Leg was produced by me, Dan Weissmann, with Emily Pisacreta and Bella Czakowski. 

In partnership with Scripps News, thanks to Rosie Chima, Amber Strong, Claire Malloy, Jacqueline Baylon and Zach Toombs and the Baltimore Banner, thanks to Ryan Little, Meredith Cohn, Brenna Smith and Kimi Yoshino and the McGraw Center for Business Journalism at the Craig Newmark Graduate School of Journalism at the City University of New York, with thanks to Jane Sasseen.

Our work on this story is supported by the Fund for Investigative Journalism, and edited by Ellen Weiss. 

Big thanks also to Jared Walker, Bobby Peterson, Luke Messac, Jeff Bloom, Emily Stuart, Berneta Hayes, Matt Szaflarski, Amanda Dunkler, and Marceline White! Plus Barry and Jo from Court Data Techologies, in Wisconsin.

Gabrielle Healy is An Arm and a Leg’s managing editor for audience – she edits the First Aid Kit newsletter.

Sarah Ballema is our Operations Manager. Bea Bosco is our Consulting Director of Operations.

An Arm and a Leg is produced in partnership with KFF Health News. 

That’s a national newsroom producing in-depth journalism about health care in America, and a core program at KFF — an independent source of health policy research, polling, and journalism. 

You can learn more about KFF Health News at arm and a leg show dot com, slash KFF. 

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

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 I-N-N dot org. 

And thanks to everybody who supports this show financially. 

If you haven’t yet, we’d love for you to pitch in to join us. Again, the place for that is arm and a leg show dot com, slash support.

And now, time for one of my favorite parts: Shouting out some of the folks who have made donations since our last episode. Thanks this time to…

[DAN READS NAMES]

Thank you so much!

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

This episode was produced in partnership with Scripps News, The Baltimore Banner, and the McGraw Center for Business Journalism at the Craig Newmark Graduate School of Journalism at the City University of New York.

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

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

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

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

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

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

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

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

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

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

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

How an Environmental Fighter Took Up Vaccines

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Recycle. Repeat. Repeat.

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

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

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

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

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

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

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

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

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

Experts fret that the Kennedy name carries weight.

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

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

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

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

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

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

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

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

Kennedy says “circumstantial evidence” is enough.

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

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

Conspiracy Theories, Consequences, and a Presidential Campaign

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

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

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

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

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

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

Time will tell whether his message resonates with voters.

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

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

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

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

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

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

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

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

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

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

PolitiFact researcher Caryn Baird contributed to this report.​

PolitiFact’s source list can be found here.

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SAN DIEGO — Erinn Maury knew Remicade wasn’t the right drug for Patti Schulte, a rheumatoid arthritis patient the physician saw at her Millersville, Maryland, practice. Schulte’s swollen, painful joints hadn’t responded to Enbrel or Humira, two drugs in the same class.

But the insurer insisted, so Schulte went on Remicade. It didn’t work either.

What’s more, Schulte suffered a severe allergic reaction to the infusion therapy, requiring a heavy dose of prednisone, a steroid with grave side effects if used at high doses for too long.

After 18 months, her insurer finally approved Maury’s drug of choice, Orencia. By then, Schulte’s vertebrae, weakened by prednisone, had started cracking. She was only 60.

Schulte’s story of pain, drug-hopping, and insurance meddling is all too common among patients with rheumatoid arthritis, who often cycle agonizingly through half a dozen drugs in search of one that provides a measure of relief. It’s also a story of how doctors are steered by pharmacy benefit managers — the middlemen of the drug market — as well as by insurers.

Once people with inflammatory conditions such as rheumatoid arthritis reach a certain stage, the first prescription offered is typically Humira, the best-selling drug in history, and part of a class known as tumor necrosis factor inhibitors, or TNFis, which fail to significantly help about half of the patients who take it.

“We practice rheumatology without any help,” said Vibeke Strand, a rheumatologist and adjunct clinical professor at Stanford. She bemoaned the lack of tools available to choose the right drug while bristling at corporate intervention in the decision. “We are told by the insurer what to prescribe to the patient. After they fail methotrexate, it’s a TNF inhibitor, almost always Humira. And that’s not OK.”

If there’s a shred of hope in this story, it’s that a blood test, PrismRA, may herald an era of improved care for patients with rheumatoid arthritis and other autoimmune conditions. But first, it must be embraced by insurers.

PrismRA employs a predictive model that combines clinical factors, blood tests, and 19 gene patterns to identify the roughly 60% of patients who are very unlikely to respond to a TNFi drug.

Over the past 25 years, drug companies have introduced five new classes of autoimmune drugs. TNFis were the first to market, starting in the late 1990s.

Some 1.3 million Americans have rheumatoid arthritis, a disease in which a person’s immune system attacks their joints, causing crippling pain and, if improperly treated, disfigurement. The newer drugs, mostly so-called biologics, are also used by some of the 25 million or more Americans with other autoimmune diseases, such as lupus, Crohn’s disease, and psoriasis. Typically costing tens of thousands of dollars annually, the drugs are prescribed after a patient fails to respond to older, cheaper drugs like methotrexate.

Until recently, rheumatologists have had few ways to predict which of the new drugs would work best on which patients. Often, “it’s a coin flip whether I prescribe drug A or B,” said Jeffrey Curtis, a rheumatology professor at the University of Alabama-Birmingham.

Yet about 90% of the patients who are given one of these advanced drugs start on a TNFi, although there’s often no reason to think a TNFi will work better than another type.

Under these puzzling circumstances, it’s often the insurer rather than the doctor who chooses the patient’s drug. Insurers lean toward TNFis such as adalimumab, commonly sold as brand-name Humira, in part because they get large rebates from manufacturers for using them. Although the size of such payments is a trade secret, AbbVie is said to be offering rebates to insurers of up to 60% of Humira’s price. That has enabled it to control 98.5% of the U.S. adalimumab market, even though it has eight biosimilar competitors.

PrismRA’s developer, Scipher Medicine, has provided more than 26,000 test results, rarely covered by insurance. But on Oct. 15, the Centers for Medicare & Medicaid began reimbursing for the test, and its use is expected to rise. At least two other companies are developing drug-matching tests for rheumatoid arthritis patients.

Although critics say PrismRA is not always useful, it is likely to be the first in a series of diagnostics anticipated over the next decade that could reduce the time that autoimmune disease patients suffer on the wrong drug.

Academics, small biotechs, and large pharmaceutical companies are investing in methods to distinguish the biological pathways involved in these diseases, and the best way to treat each one. This approach, called precision medicine, has existed for years in cancer medicine, in which it’s routine to test the genetics of patients’ tumors to determine the appropriate drug treatment.

“You wouldn’t give Herceptin to a breast cancer patient without knowing whether her tumor was HER2-positive,” said Costantino Pitzalis, a rheumatology professor at the William Harvey Research Institute in London. He was speaking before a well-attended session at an American College of Rheumatology conference in San Diego in November. “Why do we not use biopsies or seek molecular markers in rheumatoid arthritis?”

It’s not only patients and doctors who have a stake in which drugs work best for a given person.

When Remicade failed and Schulte waited for the insurer to approve Orencia, she insisted on keeping her job as an accountant. But as her prednisone-related spinal problems worsened, Schulte was forced to retire, go on Medicaid, and seek disability, something she had always sworn to avoid.

Now taxpayers, rather than the insurer, are covering Schulte’s medical bills, Maury noted.

Precision medicine hasn’t seemed like a priority for large makers of autoimmune drugs, which presumably have some knowledge of which patients are most likely to benefit from their drugs, since they have tested and sold millions of doses over the years. By offering rebate incentives to insurers, companies like AbbVie, which makes Humira, can guarantee theirs are the drugs of choice with insurers.

“If you were AbbVie,” Curtis said, “why would you ever want to publish data showing who’s not going to do well on your drug, if, in the absence of the test, everyone will start with your drug first?”

What Testing Could Do

Medicare and commercial insurers haven’t yet set a price for PrismRA, but it could save insurers thousands of dollars a year for each patient it helps, according to Krishna Patel, Scipher’s associate director of medical affairs.

“If the test cost $750, I still only need it once, and it costs less than a month of whatever drug is not going to work very well for you,” said Curtis, a co-author of some studies of the test. “The economics of a biomarker that’s anything but worthless is pretty favorable because our biologics and targeted drugs are so expensive.”

Patients are enthusiastic about the test because so many have had to take TNFis that didn’t work. Many insurers require patients to try a second TNFi, and sometimes a third.

Jen Weaver, a patient advocate and mother of three, got little benefit from hydroxychloroquine, sulfasalazine, methotrexate, and Orencia, a non-TNFi biologic therapy, before finding some relief in another, Actemra. But she was taken off that drug when her white blood cells plunged, and the next three drugs she tried — all TNFis — caused allergic reactions, culminating with an outbreak of pus-filled sores. Another drug, Otezla, eventually seemed to help heal the sores, and she’s been stable on it since in combination with methotrexate, Weaver said.

“What is needed is to substantially shorten this trial-and-error period for patients,” said Shilpa Venkatachalam, herself a patient and the director of research operations at the Global Healthy Living Foundation. “There’s a lot of anxiety and frustration, weeks in pain wondering whether a drug is going to work for you and what to do if it doesn’t.” A survey by her group found that 91% of patients worried their medications would stop working. And there is evidence that the longer it takes to resolve arthritis symptoms, the less chance they will ever stop.

How insurers will respond to the availability of tests isn’t clear, partly because the arrival of new biosimilar drugs — essentially generic versions — are making TNFis cheaper for insurance plans. While Humira still dominates, AbbVie has increased rebates to insurers, in effect lowering its cost. Lower prices make the PrismRA test less appealing to insurers, since widespread use of the test could cut TNFi prescriptions by up to a third.

However, rheumatologist John Boone in Louisville, Kentucky, found to his surprise that insurers mostly accepted alternative prescriptions for 41 patients whom the test showed unlikely to respond to TNFis as part of a clinical trial. Boone receives consulting fees from Scipher.

Although the test didn’t guarantee good outcomes, he said, the few patients given TNFis despite the test results almost all did poorly on that regimen.

Scientists from AbbVie, which makes several rheumatology drugs in addition to Humira, presented a study at the San Diego conference examining biomarkers that might show which patients would respond to Rinvoq, a new immune-suppressing drug in a class known as the JAK inhibitors. When asked about its use of precision medicine, AbbVie declined to comment.

Over two decades, Humira has been a blockbuster drug for AbbVie. The company sold more than $3.5 billion worth of Humira in the third quarter of 2023, 36% less than a year ago. Sales of Rinvoq, which AbbVie is marketing as a treatment for patients failed by Humira and its class, jumped 60% to $1.1 billion.

What Patients Want

Shannan O’Hara-Levi, a 38-year-old in Monroe, New York, has been on scores of drugs and supplements since being diagnosed with juvenile arthritis at age 3. She’s been nauseated, fatigued, and short of breath and has suffered allergic reactions, but she says the worst part of it was finding a drug that worked and then losing access because of insurance. This happened shortly after she gave birth to a daughter in 2022, and then endured intense joint pain.

“If I could take a blood test that tells me not to waste months or years of my life — absolutely,” she said. “If I could have started my current drug last fall and saved many months of not being able to engage with my baby on the floor — absolutely.”

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The House voted Dec. 11, 320-71, for legislation that would require the PBMs to change some of the ways they do business. The big three — CVS Health, Express Scripts, and OptumRx — have all announced their own reform measures in recent months. 

The bill looks unlikely to pass the Senate, though some of its provisions might eventually become law. Meanwhile, some of the most baffling contradictions of PBM drug pricing are coming to a head. 

Take AbbVie’s Humira, the highest-earning drug ever. Eight biosimilars — what ordinary people would call generics — came onto the market this year, raising hopes of big savings for patients and insurers. Some cost as little as $995 a month, compared to Humira’s wholesale price of $6,992.  

The Pharmaceutical Care Management Association, which represents the big PBMs, told KFF Health News in a statement that its members are pushing to use more of the biosimilars. Why then, asks Juliana Reed, CEO of the Biosimilars Forum trade group, did Humira account for 98.5 percent of all sales of the drug and its biosimilars as recently as November?

I’ve been told that AbbVie has threatened to withhold rebates it pays PBMs for some of its other medicines unless they give Humira good placement on formularies, the all-important lists of drugs available to their customers. The PBMs say their formularies provide the best deal for employers, but these are “assertions impossible to verify,” says James Gelfand, president and CEO of The ERISA Industry Committee, which represents large employers.

The PBMs’ strategy is purposefully obscure. Negotiations with drugmakers constitute their special sauce and they aren’t sharing the ingredients. But given that it costs up to $300 million to develop a biosimilar, the Humira battle is key to the future of biosimilars in general, and to more competition to lower expensive drug prices.

“If you can’t break into anti-inflammatory drugs it will be hard to break into any model,” Gelfand said. “It’s the weather vane, the shape of things to come.”

There’s more weird stuff going on with biosimilars. To get Inflectra, its biosimilar to Johnson & Johnson’s blockbuster Remicade, onto formularies, Pfizer pays large rebates to insurers, I’ve been told.

That’s driven down average net prices for Inflectra as well as other versions of the drug. 

Good, right? Not according to rheumatologists, the doctors who typically administer these complicated, infused drugs in their offices.

The doctors say they still have to pay much higher prices to obtain Inflectra from distributors. But their reimbursement from Medicare is reduced because of the rebates, they say. Several rheumatologists told me that the way the math works out — or rather, doesn’t — they could lose as much as $20,000 a year on each patient. 

The choice is “lose money, or divert the patient to a hospital infusion center,” said Chris Phillips, a doctor in Paducah, Ky., who chairs the American College of Rheumatology’s insurance subcommittee. The latter is “more expensive and usually not as good an experience for the patient.”

Payment imbalances also have developed for Amgen’s Avsola, another Remicade biosimilar, and for biosimilar forms of Genentech’s Rituxan, a cancer drug also infused to treat autoimmune conditions, rheumatologists say.

“The whole point of biosimilars is to make these drugs more accessible, but they’re becoming unaffordable,” said Madelaine Feldman, immediate past president of the Coalition of State Rheumatology Organizations. 

Spokespeople for Pfizer and for the Pharmaceutical Care Management Association acknowledged the rheumatologists’ dilemma. Each said it was up to the other to resolve the problem.

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In September 2022, Elyse Greenblatt of Queens returned home from a trip to Rwanda with a rather unwelcome-back gift: persistent congestion.

She felt a pain in her sinuses and sought a quick resolution.

Covid-19 couldn’t be ruled out, so rather than risk passing on an unknown infection to others in a waiting room, the New Yorker booked a telehealth visit through her usual health system, Mount Sinai — a perennial on best-hospitals lists.

That proved an expensive decision. She remembers the visit as taking barely any time. The doctor decided it was likely a sinus infection, not covid, and prescribed her fluticasone, a nasal spray that relieves congestion, and an antibiotic, Keflex. (The Centers for Disease Control and Prevention says antibiotics “are not needed for many sinus infections, but your doctor can decide if you need” one.)

Then the bill came.

The Patient: Elyse Greenblatt, now 38, had insurance coverage through Empire BlueCross BlueShield, a New York-based insurer.

Medical Services: A telehealth urgent care visit through Mount Sinai’s personal record app. Greenblatt was connected with an urgent care doctor through the luck of the draw. She was diagnosed with sinusitis, prescribed an antibiotic and Flonase, and told to come back if there was no improvement.

All this meant a big bill. The insurer said the telehealth visit was deemed an out-of-network service — a charge Greenblatt said the digital service didn’t do a great job of warning her about. It came as a surprise. “In my mind, if all my doctors are ‘in-insurance,’ why would they pair me with someone who was ‘out-of-insurance’?” she asked. And the hospital system tried its best to make contesting the charge difficult, she said.

Service Provider: The doctor was affiliated with Mount Sinai’s health system, though where the bill came from was unclear: Was it from one of the system’s hospitals or another unit?

Total Bill: $660 for what was billed as a 45- to 59-minute visit. The insurer paid nothing, ruling it out of network.

What Gives: The bill was puzzling on multiple levels. Most notably: How could this be an out-of-network service? Generally, urgent care visits delivered via video are a competitive part of the health care economy, and they’re not typically terribly expensive.

Mount Sinai’s telehealth booking process is at pains to assure bookers they’re getting a low price. After receiving the bill, Greenblatt went back to the app to recreate her steps — and she took a screenshot of one particular part of the app: the details. She got an estimated wait time of 10 minutes, for a cost of $60. “Cost may be less based on insurance,” the app said; this information, Mount Sinai spokesperson Lucia Lee said, is “for the patient’s benefit,” and the “cost may differ depending on the patient’s insurance.”

A $60 fee would be in line with, if not a bit cheaper than, many other telehealth services. Doctor on Demand, for example, offers visits from a clinician for $79 for a 15-minute visit, assuming the customer’s insurance doesn’t cover it. Amazon’s new clinic service, offering telehealth care for a wide range of conditions, advertises that charges start at $30 for a sinus infection.

The Health Care Cost Institute, an organization that analyzes health care claims data, told KFF Health News its data shows an urgent care telehealth visit runs, on average, $120 in total costs — but only $14 in out-of-pocket charges.

So how did this visit end up costing astronomically so much more than the average? After all, one of the selling points of telemedicine is not only convenience but cost savings.

First, there was the length of the visit. The doctor’s bill described it as moderately lengthy. But Greenblatt recalled the visit as simple and straightforward; she described her symptoms and got an antibiotic prescription — not a moderately complex visit requiring the better part of an hour to resolve.

The choice of description is a somewhat wonky part of health care billing that plays a big part in how expensive care can get. The more complex the case, and the longer it takes to diagnose and treat, the more providers can charge patients and insurers.

Greenblatt’s doctor billed her at a moderate level of care — curious, given her memory of the visit as quick, almost perfunctory. “I think it was five minutes,” she recalled. “I said it was a sinus infection; she told me I was right. ‘Take some meds, you’ll be fine.’”

Ishani Ganguli, a doctor at Brigham and Women’s Hospital in Boston who studies telehealth, said she didn’t know the exact circumstances of care but was “a bit surprised that it was not billed at a lower level” if it was indeed a quick visit.

That leaves the out-of-network aspect of the bill, allowing the insurer to pay nothing for the care. (Stephanie DuBois, a spokesperson for Empire BlueCross BlueShield, Greenblatt’s insurer, said the payer covers virtual visits through two services, or through in-network doctors. The Mount Sinai doctor fit neither criteria.) Still, why did Mount Sinai, Greenblatt’s usual health care system, assign her an out-of-network doctor?

“If one gets their care from the Mount Sinai system and the care is within network, I don’t think it is reasonable for the patients to expect or understand that one of the Mount Sinai clinicians is suddenly going to be out of network,” said Ateev Mehrotra, a hospitalist and telehealth researcher at Beth Israel Deaconess Medical Center.

It struck the doctors specializing in telehealth research whom KFF Health News consulted as an unusual situation, especially since the doctor who provided the care was employed by the prestigious health system.

The doctor in question may have been in network for no insurers whatsoever: A review of the doctor’s Mount Sinai profile page — archived in November 2022 — does not list any accepted insurance. (That’s in contrast to other doctors in the system.)

Lee, Mount Sinai’s spokesperson, said the doctor did take at least some insurance. When asked about the doctor’s webpage not showing any accepted plans, she responded the site “instructs patients to contact her office for the most up-to-date information.”

Attempting to solve this billing puzzle turned into a major league headache for Greenblatt. Deepening the mystery: After calling Mount Sinai’s billing department, she was told the case had been routed to disputes and marked as “urgent.”

But the doctor’s office would seemingly not respond. “In most other professions, you can’t just ignore a message for a year,” she observed.

The bill would disappear on her patient portal, then come back again. Another call revealed a new twist: She was told by a staffer that she’d signed a form consenting to the out-of-network charge. But “when I asked to get a copy of the form I signed, she asked if she could fax it,” Greenblatt said. Greenblatt said no. The billing department then asked whether they could put the form in her patient portal, for which Greenblatt gave permission. No form materialized.

When KFF Health News asked Mount Sinai about the case in mid-October of this year, Lee, the system’s spokesperson, forwarded a copy of the three-page form — which Greenblatt didn’t remember signing. Lee said the forms are presented as part of the flow of the check-in process and “intended to be obvious to the patient as required by law.” Lee said on average, a patient signs two to four forms before checking into the visit.

But, according to the time stamp on the forms, Greenblatt’s visit concluded before she signed. Lee said it is “not standard” to sign forms after the visit has concluded, and said that once informed, patients “may contact the office and reschedule with an ‘in-network provider.’”

“If it was provided after the service was rendered, that is an exception and situational,” she concluded.

The business with the forms — their timing and their obviousness — is potentially a vital distinction. In December 2020, Congress enacted the No Surprises Act, designed to crack down on so-called surprise medical bills that arise when patients think their care is covered by insurance but actually isn’t. Allie Shalom, a lawyer with Foley & Lardner, said the law requires notice to be given to patients, and consent obtained in advance.

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But the legislation provides an exception. It applies only to hospitals, hospital outpatient facilities, critical access hospitals, and ambulatory surgery centers. Greenblatt’s medical bill variously presents her visit as “Office/Outpatient” or “Episodic Telehealth,” making it hard to “tell the exact entity that provided the services,” Shalom said.

That, in turn, makes its status under the No Surprises Act unclear. The rules apply when an out-of-network provider charges a patient for care received at an in-network facility. But Shalom couldn’t be sure what entity charged Greenblatt, and, therefore, whether that entity was in network.

As for Mount Sinai, Lee said asking for consent post-visit does not comply with the No Surprises Act, though she said the system needed more time to research whether Greenblatt was billed by the hospital or another entity.

The Resolution: Greenblatt’s bill is unpaid and unresolved.

The Takeaway: Unfortunately, patients need to be on guard to protect their wallets.

If you want to be a smart shopper, consider timing the length of your visit. The “Bill of the Month” team regularly receives submissions from patients who were billed for a visit significantly longer than what took place. You shouldn’t, for example, be charged for time sitting in a virtual waiting room.

Most important, even when you seek care at an in-network hospital, whose doctors are typically in network, always ask if a particular physician you’ve not seen before is in your network. Many practices and hospitals offer providers in both categories (even if that logically feels unfair to patients). Providers are supposed to inform you that the care being rendered is out of network. But that “informed consent” is often buried in a pile of consent forms that you auto-sign, in rapid fire. And the language is often a blanket statement, such as “I understand that some of my care may be provided by caregivers not in my insurance network” or “I agree to pay for services not covered by my insurance.”

To a patient trying to quickly book care, that may not feel like “informed consent” at all.

“It’s problematic to expect patients to read the fine print, especially when they feel unwell,” Ganguli said.

Emily Siner reported the audio story.

Bill of the Month is a crowdsourced investigation by KFF Health News and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!

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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