LOS ANGELES — For nearly a decade, John Baackes has led L.A. Care Health Plan, a publicly run insurer primarily serving low-income Los Angeles County residents on Medi-Cal. It is by far the largest Medi-Cal plan in the state.
Baackes, 78, who will retire after the end of the year, helped transform L.A. Care into a major market player following its expansion under the Affordable Care Act. He implemented a new administrative structure and promoted a new internal culture. The insurer generated $11.3 billion in revenue last year, with membership close to 2.6 million people — nearly 900,000 more than when Baackes took the reins in March 2015.
“I recognized when I got here that L.A. Care was a big frog in a big pond,” he said in an interview with California Healthline on the 10th floor of L.A. Care’s downtown headquarters. But the organization still had a small-plan mentality, he said, until he convinced his staff “that we had an opportunity to really be leaders.”
Baackes moved to Los Angeles from Philadelphia, where he had headed the Medicare Advantage business of AmeriHealth Caritas VIP Care. He started at L.A. Care 15 months after the implementation of the ACA, which expanded Medicaid eligibility and created insurance exchanges where uninsured people could buy federally subsidized coverage.
L.A. Care’s Medi-Cal rolls swelled, and it offered a new health plan sold on the state’s ACA exchange, Covered California, as well as one for medically vulnerable seniors who are eligible both for Medi-Cal and Medicare.
But Baackes saw that L.A. Care didn’t have the right structure to manage the bigger organization it had become. So, he hired directors to oversee each of the health plans and revamped the chain of command.
The changes required a long period of reorientation, Baackes recalled. Then, “one of the officers came up to me one day and said, ‘Well, before I had to talk to everybody, but now I know who to talk to.’ I thought, ‘OK, phew, now we’re making progress.’”
Baackes has sometimes butted heads with state regulators, including when L.A. Care was fined $55 million in 2022 for “deep-rooted, systemic failures that threaten the health and safety of its members.” Baackes thought the fine was not justified. L.A. Care contested it and still has not paid it.
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Baackes, who will retain his position as chair of Charles R. Drew University of Medicine and Science, a medical school that trains health professionals to work in underserved areas, expounded on the shortcomings and successes of the U.S. health system and Medi-Cal, which covers well over a third of California’s population.
Like many of his colleagues, he believes Medi-Cal’s principal flaw is low payments to providers, which is exacerbated by a shortage of labor in health care. That discourages doctors and other providers from taking Medi-Cal patients, limiting their choices and extending their wait times for care. He supports Proposition 35, a measure on the ballot this November that would secure a permanent revenue stream to increase Medi-Cal payments.
L.A. Care tackled the labor shortage by creating a $205 million fund to pay for medical school scholarships, help clinics hire doctors, and offer educational debt relief to doctors who work in safety-net settings. Jennifer Kent, former director of the California Department of Health Care Services, which oversees the Medi-Cal program, said she was impressed when Baackes used money from a rate settlement with her agency to help fund those initiatives.
“John very clearly has an appreciation and a passion for the program and what it represents in terms of the power to change people’s lives,” Kent said.
This interview with Baackes has been edited for length and clarity:
Q: Voters will decide, with their vote on Proposition 35, whether money from an industry tax will be locked into Medi-Cal permanently, curbing Gov. Gavin Newsom’s plan to tap the revenue for the state’s budget shortfall. Where do you stand on this?
I understand they’ve got a budget deficit, and they’ve got to do something about it. But we have to have security of the funding, and if it’s going to be decided in every budget, there’s going to be politics and other priorities. This is the same way education runs. They went to a ballot initiative to lock in their portion of the budget, and I think the health of over one-third of the population is as important as education.
Q: Medi-Cal has embarked on an ambitious expansion, including full coverage for all immigrants, a push to increase the amount of primary care provided, the elimination of an asset test, and continuous coverage for children up to age 5, among other things. Does the provider shortage in Medi-Cal dampen the prospects of these efforts?
Absolutely. If we are giving people expansion in access, then we have to have the resources for them to take advantage of it — unless we’re going to say, “Yeah, you have access, but figure it out on your own.” If we look at Los Angeles County, we’ve got plenty of doctors bumping into each other in places like Beverly Hills and Santa Monica. But if you go to South L.A., the Antelope Valley, it’s a different story.
John Baackes, CEO of L.A. Care, stands in front of a placard on his desk, hand-carved by his daughter, which designates him as “The Big Cheese.” Baackes, who will retire in January, worries that low Medi-Cal payment rates that suppress the participation of doctors and other providers will hamper a major state push to improve the program.(Bernard Wolfson/KFF Health News)
Q: What do you think of the Office of Health Care Affordability’s goal of limiting annual health care spending increases to 3.5% at first, and ultimately to 3%?
Well-intended, but I do not see how it can be effective without causing a lot of damage along the way. You can restrict the amount of money that can be spent, but it doesn’t fix the underlying drivers of why it costs so much.
Q: So it could ultimately reduce care for patients?
Yeah. I think so. Because if doctors and nurses demand higher salaries and can command them because there aren’t enough people, then having an administrative hammer that you can’t spend more isn’t going to work.
Q: A lot of people would say the whole U.S. health care system, not just Medicaid, is failing patients. Access to care, and the cost of it, is difficult for a lot of people. How do we fix the system?
We need to simplify the regulatory environment. Regardless of whether it’s commercial insurance, Medicare, or Medicaid, the regulations are piling up and they cost money. The second thing: I think particularly the safety-net providers might have to say there can be no for-profit or private equity investors in that area. I’m not against capitalism. I just think if you’re going to make that money on a system that’s underfunded in the first place, something is being lost.
Q: What are your thoughts about the California Advancing and Innovating Medi-Cal program (CalAIM), especially the community supports such as meals designed for specific medical conditions, home modifications, and help finding housing?
CalAIM is a wonderful program in the sense that it begins to recognize that social determinants do influence your health. So we’re finally saying, “OK, we’ll put some money toward paying for those.” But the trade-off is that they want to reduce the medical costs by making these investments. The problem is we are trying to save dollars that are already deeply discounted. Of the 14 community supports they have, the one that is in my mind a slam dunk is the medically tailored meals.
Q: How has your thinking about health care evolved?
What I’ve learned and experienced is that health care is part of social justice, and we have to think of it that way. Any other way of thinking of it is going to create winners and losers.
Triumphant music plays as cancer patients go camping, do some gardening, and watch fireworks in ads for Opdivo+Yervoy, a combination of immunotherapies to treat metastatic melanoma and lung cancer. Ads for Skyrizi, a medicine to treat plaque psoriasis and other illnesses, show patients snorkeling and riding bikes — flashing their rash-free elbows. People with Type 2 diabetes dance and sing around their office carrels, tipping their hats to Jardiance. Drugs now come with celebrity endorsements: Wouldn’t you want the migraine treatment endorsed by Lady Gaga, Nurtec ODT?
Drug ads have been ubiquitous on TV since the late 1990s and have spilled onto the internet and social media. The United States and New Zealand are the only countries that legally allow direct-to-consumer pharmaceutical advertising. (The European Union was furious when Lady Gaga’s Instagram post promoting the migraine drug was visible on the continent, noting it flagrantly violated its ban on direct-to-consumer advertising.)
Manufacturers have spent more than $1 billion a month on ads in recent years. Last year, three of the top five spenders on TV advertising were drug companies.
Such promotion was banned until 1997, when the FDA reluctantly allowed pharmaceutical ads on TV, so long as they gave an accurate accounting of a medicine’s true benefits and risks, including a list of potential side effects.
With those guardrails in place, few thought advertising would take hold. But the FDA underestimated the wiliness of the pharmaceutical industry, which invented a new art form: finding ways to make their wares seem like joyous must-have treatments, while often minimizing lackluster efficacy and risks.
A 2023 study found that, among top-selling drugs, those with the lowest levels of added benefit tended to spend more on advertising to patients than doctors. “I worry that direct-to-consumer advertising can be used to drive demand for marginally effective drugs or for drugs with more affordable or more cost-effective alternatives,” the study’s author, Michael DiStefano, a professor of clinical pharmacology at the University of Colorado, said in an email.
Indeed, more than 50% of what Medicare spent on drugs from 2016 through 2018 was for drugs that were advertised. Half of the 10 drugs that the Joe Biden-Kamala Harris administration targeted for drug price negotiation this year are among the drugs with the largest direct-to-consumer ad spend.
The government has, in recent years, tried to ensure that prescription-drug advertising gives a more accurate and easily understood picture of benefits and harms. But the results have been disappointing. When President Donald Trump’s administration tried to get drugmakers to list the price of any treatments costing over $35 on TV ads, for example, the industry took it to federal court, saying the mandate violated drugmakers’ First Amendment rights. Big Pharma won.
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Last November, the FDA issued requirements that ads give consumers a “non-misleading net impression about the advertised drug.” The agency stated that information had to be presented in a “clear, conspicuous, and neutral manner.” Ads must avoid “audio or visual elements that might interfere with the consumer’s understanding” and “text information is presented in a way that is easy to read.”
But the language is disappointingly vague: What do “neutral” and “non-misleading” mean? Do the proscribed audio-visual elements include people hiking, or dancing to upbeat music? How quickly or slowly can the chyrons listing adverse reactions scurry across your screen? There is no FDA police force to decide how the language should be interpreted.
I asked the agency for an interview to get some clarity on its plans, but instead got a three-page email that, well, left me worrying that the blizzard of drug ads is here to stay.
It told me that ads are not vetted before airing unless the manufacturers voluntarily submit them because it is “the drugmakers’ responsibility to make sure they comply.” How do they catch ads that are noncompliant? Often, via consumer complaints, or when an agency staff member sees a booth with misleading information at a conference, the email said.
Within the FDA’s watchdog arm, the Advertising and Promotional Labeling Branch, “there are currently nine full-time employees, and a small percentage of their work includes review of DTC promotional communications, as well as other activities,” according to the agency email. If ads are determined to be noncompliant, the FDA can notify the manufacturer by sending it an “untitled or warning letter.” From 2019 to 2024, it sent a total of just 32.
The FDA launched the Bad Ad Program to help physicians recognize false and misleading promotions directed toward them. It created a one-hour course with case studies, and gave doctors an easy way to report abuse, by calling 855-RX-BADAD. But it’s too early to say whether doctors, who dislike such ads too, will use the hotline, and the agency is woefully understaffed to monitor it.
The FDA has set up a parallel site aiming to teach consumers to better discern whether an ad follows the rules, and to help them discern if a medicine is “right for you.” That, however, requires medical knowledge that most people don’t have.
The Federal Trade Commission, which oversees ads in other sectors — from banking to contact lenses — is more active in suing to halt those it considers deceptive or misleading. In recent years, it sued to prevent unsupported claims on stem cell treatments for arthritis and false or misleading information about some health insurance plans. But it has no jurisdiction over direct-to-consumer drug advertising, a commission spokesperson said.
In a long-ago era when cures were mostly sold by “snake oil” salespeople, the 19th-century psychologist William James derided “the medical advertisement abomination” and wrote that “the authors of these advertisements should be treated as public enemies and have no mercy shown.” As scientific understanding has matured, and today’s drugs have alleviated suffering and even saved lives, a more nuanced approach is, of course, in order.
Common sense and the sort of truth-in-advertising standard we apply in other sectors could be a suitable first step. Take ads that promise patients with advanced cancers “a chance to live longer.” A more truthful ad might say that studies are equivocal or, as the widower of one patient drawn in by an ad wrote in an op-ed article: “an outside chance for people with advanced lung cancer to live just a few months longer.” And they’re not likely to be hiking or hitting the beach during that time.
With a bit of commonsense, truth-in-advertising enforcement, many of the ads would disappear. The FDA email informed me that it is working with the Duke-Margolis Institute for Health Policy and others to help “further develop” its policy and guidance documents.
Gerard Anderson, a professor of health policy at Johns Hopkins University’s Bloomberg School of Public Health, proposes that, at the very least, drug ads should be required to feature prominent warnings about risks, like those on cigarette packs. “If you see it on TV or on social media, it’s probably not as good as something else,” he added. Or at least more expensive.
Remember that media ads for cigarettes were ubiquitous before they were banned by a congressional act, which took effect in 1971, because they were found to promote a dangerous product. Yes, it’s a harder case to make with advertising for pharmaceuticals, some of which harm many people with their side effects (and costs) but certainly can help some a great deal.
But, as I watched the Democratic National Convention last month, I thought: Couldn’t someone in politics make these endless drug ads disappear, as has occurred in nearly every other developed country? Companies prodding patients to “ask your doctor” for drugs that they may not need isn’t just about truth in advertising or breaking government and personal budgets. It is an issue of public health.
This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.
La música triunfal suena mientras pacientes con cáncer van de campamento, hacen jardinería y ven fuegos artificiales en anuncios de Opdivo+Yervoy, una combinación de inmunoterapias para tratar el melanoma metastásico y el cáncer de pulmón. Los comerciales de Skyrizi, un medicamento para tratar la psoriasis en placas y otras enfermedades, muestran a los pacientes buceando y andando en bicicleta, mostrando sus codos libres de erupciones.
Las personas con diabetes tipo 2 bailan y cantan alrededor de sus cubículos en la oficina, sacándose el sombrero ante Jardiance. Ahora, los medicamentos se lanzan con el respaldo de celebridades: ¿no querrías probar Nurtec ODT, el tratamiento para migrañas que respalda Lady Gaga?
Los anuncios de medicamentos han sido omnipresentes en la televisión desde finales de la década de 1990 y se han extendido a internet y las redes sociales. Estados Unidos y Nueva Zelanda son los únicos países que permiten legalmente la publicidad farmacéutica directa al consumidor. (La Unión Europea se enfureció cuando la publicación de Instagram de Lady Gaga promocionando el medicamento para migrañas fue visible en el continente, señalando que violaba de manera flagrante su prohibición de la publicidad directa al consumidor).
Los fabricantes han gastado más de $1.000 millones al mes en anuncios en los últimos años. En 2023, tres de las cinco compañías que más gastaron en publicidad televisiva fueron empresas farmacéuticas.
Este tipo de promoción estuvo prohibida hasta 1997, cuando la Administración de Drogas y Alimentos (FDA) permitió a regañadientes los anuncios farmacéuticos en televisión, siempre que ofrecieran un recuento preciso de los verdaderos beneficios y riesgos de un medicamento, incluyendo una lista de posibles efectos secundarios.
Con esas salvaguardas, pocos pensaron que la publicidad se afianzaría. Pero la FDA subestimó la astucia de la industria farmacéutica, que inventó una nueva forma de arte: encontrar maneras de hacer que sus productos parecieran tratamientos imprescindibles llenos de esperanza, minimizando a menudo la eficacia mediocre y los riesgos.
Un estudio de 2023 encontró que, entre los medicamentos más vendidos, aquellos con los niveles más bajos de beneficio adicional tendían a gastar más en publicidad dirigida a los pacientes que a los médicos.
“Me preocupa que la publicidad directa al consumidor pueda usarse para impulsar la demanda de medicamentos marginalmente efectivos o de medicamentos con alternativas más asequibles o más rentables”, dijo el autor del estudio, Michael DiStefano, profesor de farmacología clínica en la Universidad de Colorado, en un correo electrónico.
De hecho, más del 50% de lo que Medicare gastó en medicamentos entre 2016 y 2018 fue en medicamentos que se anunciaron. La mitad de los 10 medicamentos que la administración de Joe Biden-Kamala Harris apuntó para la negociación de precios de medicamentos este año están entre los medicamentos con mayor gasto en publicidad directa al consumidor.
En los últimos años, el gobierno ha intentado asegurarse de que la publicidad de medicamentos con receta ofrezca una imagen más precisa y fácilmente comprensible de los beneficios y daños.
Pero los resultados han sido decepcionantes. Cuando la administración del presidente Donald Trump intentó que las compañías farmacéuticas incluyeran el precio de cualquier tratamiento que costara más de $35 en los anuncios de televisión, la industria lo demandó, argumentando que el mandato violaba los derechos de la Primera Enmienda de los fabricantes de medicamentos. Big Pharma ganó.
En noviembre pasado, la FDA emitió requisitos que exigen que los comerciales den a los consumidores una “impresión general no engañosa sobre el medicamento publicitado”. La agencia declaró que la información debía presentarse de manera “clara, conspicua y neutral”. Los anuncios deben evitar “elementos audiovisuales que puedan interferir con la comprensión del consumidor” y “la información textual debe presentarse de una manera que sea fácil de leer”.
Pero el lenguaje es decepcionantemente vago: ¿qué significan “neutral” y “no engañoso”? ¿Incluyen los elementos audiovisuales prohibidos a personas caminando o bailando? ¿Con qué rapidez o lentitud pueden las leyendas que enumeran las reacciones adversas cruzar tu pantalla? No hay una fuerza policial de la FDA para decidir cómo debe interpretarse el lenguaje.
(En respuesta a un pedido de entrevista, la agencia envió un largo correo electrónico).
Dijeron que los anuncios no se revisan antes de su emisión a menos que los fabricantes los presenten voluntariamente porque es “responsabilidad de los fabricantes de medicamentos asegurarse de que cumplen”. ¿Cómo detectan los anuncios que no cumplen? A menudo, a través de quejas de los consumidores o cuando un miembro del personal de la agencia ve un stand con información engañosa en una conferencia, decía el correo electrónico.
Dentro del brazo de supervisión de la FDA, la Rama de Publicidad y Etiquetado Promocional, “actualmente hay nueve empleados a tiempo completo, y un pequeño porcentaje de su trabajo incluye la revisión de comunicaciones promocionales dirigidas al consumidor, así como otras actividades”, según el correo electrónico de la agencia.
Si se determina que los anuncios no cumplen, la FDA puede notificar al fabricante enviándole una “carta sin título o de advertencia”.
De 2019 a 2024, envió solo 32.
La FDA lanzó el Programa Bad Ad para ayudar a los médicos a reconocer promociones falsas y engañosas dirigidas a ellos. Creó un curso de una hora con estudios de casos y les dio a los médicos una forma fácil de denunciar abusos, llamando al 855-RX-BADAD. Pero es demasiado pronto para decir si los médicos, que también desprecian esos anuncios, usarán la línea directa, y la agencia está terriblemente mal equipada para monitorearla.
La FDA también ha creado un sitio paralelo destinado a enseñar a los consumidores a discernir mejor si un anuncio sigue las reglas y a ayudarlos a ver si un medicamento es “adecuado para usted”. Sin embargo, eso requiere un conocimiento médico que la mayoría de la gente no tiene.
La Comisión Federal de Comercio, que supervisa los anuncios en otros sectores, desde la banca hasta las lentes de contacto, es más activa en demandar para detener a aquellos que considera engañosos o fraudulentos. En los últimos años, demandó para prevenir afirmaciones infundadas sobre tratamientos con células madre para la artritis e información falsa o engañosa sobre algunos planes de seguro de salud.
Pero no tiene jurisdicción sobre la publicidad de medicamentos dirigida al consumidor, dijo un vocero de la comisión.
En el pasado lejano, cuando a la mayoría de las curas las vendían los vendedores de “aceite de serpiente”, el psicólogo del siglo XIX William James despreciaba “la abominación de la publicidad médica” y escribía que “los autores de estos anuncios deberían ser tratados como enemigos públicos y no mostrarles misericordia”.
A medida que la comprensión científica ha madurado, y los medicamentos de hoy han aliviado el sufrimiento e incluso salvado vidas, es necesario un enfoque más matizado.
El sentido común y el tipo de estándar de veracidad en la publicidad que se aplica en otros sectores podrían ser un primer paso adecuado. Por ejemplo, anuncios que prometen a los pacientes con cánceres avanzados “una oportunidad de vivir más tiempo”.
Un anuncio más honesto podría decir que los estudios son equívocos o, como escribió en una columna de opinión el viudo de una paciente atraída por uno de estos anuncios: “una oportunidad remota para las personas con cáncer de pulmón avanzado de vivir solo unos pocos meses más”. Y probablemente no estarán caminando o yendo a la playa durante ese tiempo.
Con un poco de sentido común, la aplicación de la veracidad en la publicidad, muchos de los anuncios desaparecerían. El correo electrónico de la FDA informó que está trabajando con el Instituto de Política de Salud Duke-Margolis y otros para ayudar a “desarrollar aún más” sus políticas y documentos de orientación.
Gerard Anderson, profesor de política de salud en la Escuela de Salud Pública Bloomberg de la Universidad Johns Hopkins, propone que, al menos, los anuncios de medicamentos deberían estar obligados a presentar advertencias prominentes sobre los riesgos, como las que aparecen en los paquetes de cigarrillos. “Si lo ves en televisión o en las redes sociales, probablemente no sea tan bueno como otra cosa”, agregó. O al menos más caro.
Habría que recordar que los anuncios de cigarrillos en los medios eran omnipresentes antes de que los prohibiera una ley del Congreso que entró en vigencia en 1971, porque se encontró que promovían un producto peligroso.
Sí, es un caso más difícil de argumentar con la publicidad de productos farmacéuticos, algunos de los cuales perjudican a muchas personas con sus efectos secundarios (y costos), pero ciertamente pueden ayudar mucho a otros.
¿No podría alguien en la política hacer desaparecer estos interminables anuncios de medicamentos, como ha ocurrido en casi todos los demás países desarrollados? Las compañías incitando a los pacientes a “preguntar a su médico” por medicamentos que tal vez no necesiten no se trata solo de veracidad en la publicidad o de romper presupuestos gubernamentales y personales. Es una cuestión de salud pública.
Esta historia fue producida por KFF Health News, conocido antes como Kaiser Health News (KHN), una redacción nacional que produce periodismo en profundidad sobre temas de salud y es uno de los principales programas operativos de KFF, la fuente independiente de investigación de políticas de salud, encuestas y periodismo.
In a video posted to Reddit this summer, Lucie Rosenthal’s face starts focused and uncertain, looking intently into the camera, before it happens.
She releases a succinct, croak-like belch.
Then, it’s wide-eyed surprise, followed by rollicking laughter. “I got it!” the Denver resident says after what was her second burp ever.
“It’s really rocking my mind that I am fully introducing a new bodily function at 26 years old,” Rosenthal later told California Healthline while working remotely, because, as great as the burping was, it was now happening uncontrollably. “Sorry, excuse me. Oh, my god. That was a burp. Did you hear it?”
Rosenthal is among more than a thousand people who have received a procedure to help them burp since 2019 when an Illinois doctor first reported the steps of the intervention in a medical journal.
The inability to belch can cause bloating, pain, gurgling in the neck and chest, and excessive flatulence as built-up air seeks an alternate exit route. One Reddit user described the gurgling sound as an “alien trying to escape me,” and pain like a heart attack that goes away with a fart.
The procedure has spread, primarily thanks to increasingly loud rumblings in the bowels of Reddit. Membership in a subreddit for people with or interested in the condition has ballooned to about 31,000 people, to become one of the platform’s larger groups.
Since 2019, the condition has had an official name: retrograde cricopharyngeus dysfunction, also known as “abelchia” or “no-burp syndrome.” The syndrome is caused by a quirk in the muscle that acts as the gatekeeper to the esophagus, the roughly 10-inch-long muscular tube that moves food between the throat and the stomach.
The procedure to fix it involves a doctor injecting 50 to 100 units of Botox — more than twice the amount often used to smooth forehead wrinkles — into the upper cricopharyngeal muscle.
Michael King, the physician who treated Rosenthal, said he hadn’t heard of the disorder until 2020, when a teenager, armed with a list of academic papers found on Reddit, asked him to do the procedure.
It wasn’t a stretch. King, a laryngologist with Peak ENT and Voice Center, had been injecting Botox in the same muscle to treat people having a hard time swallowing after a stroke.
Now he’s among doctors from Norway to Thailand listed on the subreddit, r/noburp, as offering the procedure. Other doctors, commenters have noted, have occasionally laughed at them or made them feel they were being melodramatic.
To be fair, doctors and researchers don’t understand why the same muscle that lets food move down won’t let air move up.
“It’s very odd,” King said.
Doctors also aren’t sure why many patients keep burping long after the Botox wears off after a few months. Robert Bastian, a laryngologist outside of Chicago, named the condition and came up with the procedure. He estimates he and his colleagues have treated about 1,800 people, charging about $4,000 a pop.
“We hear that in Southern California it’s $25,000, in Seattle $16,000, in New York City $25,000,” Bastian said.
Because insurance companies viewed Botox charges as a “red flag,” he said, his patients now pay $650 to cover the medication so it can be excluded from the insurance claims.
The pioneering patient is Daryl Moody, a car technician who has worked at the same Toyota dealership in Houston for half his life. The 34-year-old said that by 2015 he had become “desperate” for relief. The bloating and gurgling wasn’t just a painful shadow over his day; it was cramping his new hobby: skydiving.
“I hadn’t done anything fun or interesting with my life,” he said.
That is, until he tried skydiving. But as he gained altitude on the way up, his stomach would inflate like a bag of chips on a flight.
“I went to 10 doctors,” he said. “Nobody seemed to believe me that this problem even existed.”
Bloating from the inability to burp was painful and interfered with Daryl Moody’s skydiving hobby. Moody was the first-known person to receive a Botox injection for a burping problem.(Todd Tribe Jr.)
Then he stumbled upon a YouTube video by Bastian describing how Botox injections can fix some throat conditions. Moody asked if Bastian could try it to cure his burping problem. Bastian agreed.
Moody’s insurance considered it “experimental and unnecessary,” he recalled, so he had to pay about $2,700 out-of-pocket.
“This is honestly going to change everything,” he posted on his Facebook page in December 2015, about his trip to Illinois.
The year after his procedure, Moody helped break a national record for participating in the largest group of people to skydive together while wearing wingsuits, those getups that turn people into flying squirrels. He has jumped about 400 times now.
People have been plagued by this issue for at least a few millennia. Two thousand years ago, the Roman philosopher Pliny the Elder described a man named Pomponius who could not belch. And 840 years ago, Johannes de Hauvilla included the tidbit in a poem, writing, “The steaming face of Pomponius could find no relief by belching.”
It took a few more centuries for clinical examples to pop up. In the 1980s, a fewcase reports in the U.S. described people who couldn’t burp and had no memory of vomiting. One woman, doctors wrote, was “unable to voluntarily belch along with her childhood friends when this was a popular game.”
The patients were in a great deal of pain, though doctors couldn’t find anything wrong with their anatomy. But the doctors confirmed using a method called manometry that patients’ upper esophageal sphincters simply would not relax — not after a meal of a sandwich, glass of milk, and candy bar, nor after doctors used a catheter to squirt several ounces of air beneath the stubborn valve.
André Smout, a gastroenterologist at the University of Amsterdam in the Netherlands, said he read those reports when they came out.
“But we never saw the condition, so we didn’t believe that it existed in real life,” he said.
Smout’s doubts persisted until he and colleagues studied a small group of patients a few years ago. The researchers gave eight patients with a reported inability to burp a “belch provocation” in the form of carbonated water, and used pressure sensors to observe how their throats moved. Indeed, the air stayed trapped. A Botox injection resolved their problems by giving them the ability to burp, or, to use an academic term, eructate.
“We had to admit that it really existed,” Smout said.
He wrote this summer in Current Opinion in Gastroenterology that the syndrome “may not be as rare as thought hitherto.” He credits Reddit with alerting patients and medical professionals to its existence.
But he wonders how often the treatment might cause a placebo effect. He pointed to studies finding that with conditions such as irritable bowel syndrome, 40% or more of patients who receive placebo treatment feel their symptoms improve. Awareness is also growing about “cyberchondria,” when people search desperately online for answers to their ailments — putting them at risk of unnecessary treatment or further distress.
In Denver, Rosenthal, the new burper, is open to the idea that the placebo effect could be at play for her. But even if that’s the case, she feels much better.
“I felt perpetual nausea, and that has subsided a lot since I got the procedure done,” she said. So has the bloating and stomach pain. She can drink a beer at happy hour and not feel ill.
She’s pleased insurance covered the procedure, and she’s getting a handle on the involuntary burping. She cannot, however, burp the alphabet.
CHARLOTTE, N.C. — During the heat dome that blanketed much of the Southeast in June, Stacey Freeman used window units to cool her poorly insulated mobile home in Fayetteville, North Carolina. Over the winter, the 44-year-old mom relied on space heaters.
In both instances, her energy bills reached hundreds of dollars a month.
“Sometimes I have to choose whether I’m going to pay the light bill,” Freeman said, “or do I pay all the rent or buy food or not let my son do a sport?”
As a regional field organizer for PowerUp NC, Freeman’s job is to help people properly weatherize their homes, particularly in the Sandhills region, where she lives and works and where poverty and rising temperatures make residents vulnerable to the health impacts of climate change.
But Freeman’s income is too high to benefit from the very services she helps others attain from that grassroots sustainability, clean energy, and environmental justice initiative.
Like a growing number of Americans, Freeman struggles with what is known as energy poverty, including the inability to afford utilities to heat or cool a home. Households that spend more than 6% of their income on energy bills are energy-poor, some researchers suggest.
An increasing number of Americans, including Freeman, struggle with energy poverty, including the inability to afford utilities to heat or cool one’s home. (Andrew Craft for KFF Health News)
During the heat dome that blanketed much of the Southeast in June, Freeman had to use window units to cool her mobile home. Over the winter, she relied on space heaters. (Andrew Craft for KFF Health News)
Energy poverty can increase one’s exposure to extreme heat or cold, which raises the risk of developing respiratory issues, heart problems, allergies, kidney disorders, and other health conditions. And the burden falls disproportionately on households in communities of color, which experience it at a rate 60% greater than those in white communities.
Public health and environmental experts say that as climate change continues to create extreme weather conditions, more policy efforts are needed to help vulnerable communities, especially during heat waves.
“Energy poverty is just one example of how climate change can exacerbate existing inequities in our communities,” said Summer Tonizzo, a spokesperson for the North Carolina Department of Health and Human Services.
Extreme heat is the No. 1 cause of weather-related deaths in the U.S., a risk that grows as temperatures rise. Last year, 2,302 people in the U.S. died from heat-related causes, a 44% increase from 2021. In one week in early July this year, extreme heat killed at least 28 people, according to The Washington Post, based on reports from state officials, medical examiners, and local news reports.
Yet, 1 in 7 households spend about 14% of their income on energy, according to RMI, an energy and sustainability think tank. Nationally, 16% of households are in energy poverty, concluded an analysis co-authored by Noah Kittner, an assistant professor of public health at the University of North Carolina-Chapel Hill.
“Old, inefficient buildings and heating systems are prompting people to supplement their energy needs in ways that increase the costs,” Kittner said.
Pregnant women, people with heart or lung conditions, young children, older adults, and people working or exercising outdoors are most at risk for heat-related health concerns. High temperatures are also correlated with mental health issues such as suicide and severe depression.
Location is another risk factor. For example, in a historically Black community in Raleigh, known as Method, temperatures can be 10 to 20 degrees hotter than nearby areas with more vegetation and less development, said La’Meshia Whittington, an environmental justice and clean energy advocate. Interstate 440 runs through Method, and the city stores shuttle buses there, often with engines running.
“That creates a lot of pollution that heats up the neighborhood,” Whittington said. “There’s no land to soak up the heat. Instead, it bounces off shingles, roofs, pavement and creates a stove.”
Method residents frequently complain of chronic headaches and respiratory problems, she said.
While rural areas tend to have lower temperatures than nearby urban areas because they have less asphalt and more trees, they often lack resources, such as health care facilities and cooling centers. Substandard housing and higher rates of poverty contribute to high rates of heat-related illness.
Energy poverty “is the layering of burdens without a means, at the individual level, to combat those burdens,” said Ashley Ward, director of the Heat Policy Innovation Hub at Duke University.
In many parts of the country, extreme heat is a relatively new concern. Policymakers have historically focused on threats from colder temperatures.
The federal government’s Low Income Home Energy Assistance Program, established more than four decades ago, has a funding formula that favors cold-weather states over those that experience extreme heat, according to research from Georgetown University. Florida, Georgia, Arizona, Texas, and Nevada have the lowest proportional allocations of federal funding, while North Dakota, South Dakota, and Nebraska have the highest.
Freeman, a regional field organizer with the environmental nonprofit PowerUp NC, waits to talk to people about properly weatherizing their homes at the Black BBQ Cookoff in Fayetteville, North Carolina.(Andrew Craft for KFF Health News)
North Carolina has largely relied on private donors and local nonprofits, such as PowerUp, to distribute fans and air conditioning units in the summer, but the state doesn’t contribute to costs of energy bills.
On extremely hot days, Freeman and her PowerUp NC colleagues work with state health officials to direct vulnerable people to cooling centers.
On a personal level, staying cool this summer meant sending her son to a free, open recreational center, rather than paying for him to join a sports league.
“We’re doing stuff that doesn’t cost,” she said. “Just trying to keep up with the electric bill.”
En un video publicado en Reddit este verano, aparece en primer plano la cara de Lucie Rosenthal, mirando fijo a la cámara, antes de que suceda.
De repente, la mujer eructa. Un eructo corto y agudo.
Luego, abre sus ojos sorprendida, y lanza una risotada. “¡Lo logré!”, dice la residente de Denver después de lograr el segundo eructo de su vida.
“Para mí es realmente asombroso estar introduciendo una nueva función corporal a los 26 años”, dijo Rosenthal a KFF Health News mientras trabajaba de forma remota, porque, aunque eructar era genial, ahora ocurría de forma incontrolada. “Perdón, discúlpame. Oh, Dios mío. Eso fue un eructo. ¿Lo escuchaste?”.
Rosenthal es una de más de mil personas a las que, desde 2019, se ha realizado un procedimiento para ayudarles a eructar, cuando un médico de Illinois informó por primera vez los pasos de esta intervención en una revista médica.
La incapacidad de eructar puede causar hinchazón, dolor, gorgoteos en el cuello y el pecho, y flatulencias excesivas mientras el aire acumulado busca una salida alternativa.
Un usuario de Reddit describió el sonido de los gorgoteos como un “alien intentando escapar de mí”, y el dolor como un ataque al corazón que desaparece con un gas.
El procedimiento se ha extendido, principalmente gracias a los crecientes comentarios en las entrañas de Reddit. La membresía en un subreddit para personas con esta condición o interesadas en ella ha aumentado a unas 31,000 participantes, convirtiéndose en uno de los grupos más grandes de la plataforma.
Desde 2019, la condición tiene un nombre oficial: disfunción cricofaríngea retrógrada, también conocida como “abelchia” o “síndrome de no eructo”.
El síndrome es causado por una anomalía en el músculo que actúa como el guardián del esófago: el tubo muscular de unos 10 pulgadas de largo que mueve la comida entre la garganta y el estómago.
Durante el procedimiento para solucionarlo, el médico inyecta entre 50 y 100 unidades de Botox, más del doble de la cantidad que se usa a menudo para diluir las arrugas de la frente, en el músculo cricofaríngeo superior.
Michael King, el médico que trató a Rosenthal, dijo que no había oído hablar del trastorno hasta 2020, cuando un adolescente, armado con una lista de artículos académicos que había encontrado en Reddit, le pidió que realizara el procedimiento.
No era algo nuevo para él. King, un laringólogo del Peak ENT and Voice Center, ya había estado inyectando Botox en el mismo músculo para tratar a personas que tenían dificultades para tragar después de un derrame cerebral.
Ahora es uno de los médicos desde Noruega hasta Tailandia listados en el subgrupo de reddit r/noburp ofreciendo el procedimiento. Otros médicos, según han señalado algunas personas en comentarios, ocasionalmente se han reído de ellos o los han hecho sentir que estaban siendo melodramáticos.
Para ser justos, los médicos e investigadores no entienden por qué el mismo músculo que permite que la comida baje no deja que el aire suba. “Es muy extraño”, dijo King.
Los médicos tampoco están seguros de por qué muchos pacientes siguen eructando mucho después que el Botox se desvanece luego de algunos meses después del tratamiento.
La hinchazón por la incapacidad de eructar era dolorosa e interfería con el pasatiempo de Daryl Moody, el paracaidismo. Moody fue la primera persona conocida en recibir una inyección de bótox por un problema de eructos.(Todd Tribe Jr.)
Robert Bastian, laringólogo de las afueras de Chicago, nombró la condición e ideó el procedimiento. Estima que él y sus colegas han tratado a unas 1,800 personas, cobrando unos $4,000 por persona.
“Hemos oído que en el sur de California cuesta $25,000, en Seattle $16,000, en la ciudad de Nueva York $25,000”, dijo Bastian.
Dijo que, debido a que las aseguradoras veían los cargos por Botox como una “señal de alerta”, ahora sus pacientes pagan $650 para cubrir el medicamento para que que no aparezcan en los reclamos a los seguros.
El paciente pionero es Daryl Moody, un mecánico que ha trabajado en el mismo concesionario Toyota en Houston durante la mitad de su vida. El hombre de 34 años dijo que para 2015 estaba “desesperado” por encontrar alivio. La hinchazón y los gorgoteos no solo eran una sombra dolorosa en su día; estaban arruinando su nuevo pasatiempo: el paracaidismo.
“No había hecho nada divertido o interesante con mi vida”, dijo.
Hasta que probó el paracaidismo. Pero a medida que ganaba altitud en el ascenso, su estómago se inflaba como una bolsa de papas fritas en un vuelo.
“Fui a 10 médicos”, dijo. “Nadie parecía creerme que este problema siquiera existía”.
Entonces se tropezó con un video de YouTube de Bastian que describía cómo las inyecciones de Botox pueden corregir algunas condiciones de la garganta. Moody le preguntó a Bastian si podría intentar hacerlo para curar su problema de eructos. Bastian aceptó.
El seguro de Moody lo consideró “experimental e innecesario”, recordó, por lo que tuvo que pagar unos $2,700 de su bolsillo.
“Esto honestamente va a cambiar todo”, publicó en su página de Facebook en diciembre de 2015, sobre su viaje a Illinois.
Al año de su procedimiento, Moody ayudó a romper un récord nacional al participar en el grupo más grande de personas que saltan juntas en paracaídas con trajes especiales. Ya ha saltado unas 400 veces.
Las personas han estado sufriendo muchísimo por este problema durante milenios. Hace 2,000 años, el filósofo romano Plinio el Viejo describió a un hombre llamado Pomponio que no podía eructar. Y hace 840 años, Johannes de Hauvilla incluyó el detalle en un poema, escribiendo: “La cara ardiente de Pomponio no podía encontrar alivio al eructar”.
Tomaron algunos siglos más para que se registraran ejemplos clínicos. En la década de 1980, algunos informes de casos en Estados Unidos describían personas que no podían eructar y no recordaban haber vomitado. Una mujer, escribieron los médicos, era “incapaz de eructar voluntariamente junto con sus amigos de la infancia cuando este era un juego popular”.
Los pacientes sentían un profundo dolor, aunque los médicos no podían encontrar nada mal con su anatomía. Pero utilizando un método llamado manometría pudieron confirmar que los esfínteres esofágicos superiores de los pacientes simplemente no se relajaban, ni siquiera después de comer un sándwich, un vaso de leche y un barra de chocolate, ni después de que los médicos utilizaron un catéter para rociar varias onzas de aire debajo de la obstinada válvula.
André Smout, gastroenterólogo de la Universidad de Ámsterdam en los Países Bajos, dijo que leyó esos informes cuando salieron. “Pero nunca vimos la condición, así que no creíamos que existiera en la vida real”, agregó.
Las dudas de Smout persistieron hasta que él y sus colegas estudiaron a un pequeño grupo de pacientes hace unos años. Los investigadores dieron a ocho pacientes con la supuesta incapacidad de eructar una “disparador de eructos” en forma de agua carbonatada, y utilizaron sensores de presión para observar cómo se movían sus gargantas. De hecho, el aire se quedaba atrapado.
Una inyección de Botox resolvió sus problemas al darles la capacidad de eructar, o, para usar un término académico, producir un eructo.
“Tuvimos que admitir que realmente existía”, dijo Smout.
Este verano escribió en Current Opinion in Gastroenterology que el síndrome “puede no ser tan raro como se pensaba hasta ahora”. Atribuye a Reddit haber alertado a pacientes y profesionales médicos sobre su existencia.
Pero se pregunta con qué frecuencia el tratamiento podría causar un efecto placebo. Señaló estudios que encontraron que en condiciones como el síndrome del intestino irritable, el 40% o más de los pacientes que reciben tratamiento con placebo sienten que sus síntomas mejoran.
También está aumentando la conciencia sobre la “cibercondria”, cuando las personas buscan desesperadamente en línea respuestas a sus dolencias, lo que los pone en riesgo de recibir tratamientos innecesarios o sufrir más angustia.
En Denver, Rosenthal, la nueva “eructadora”, está abierta a la idea de que el efecto placebo podría estar actuando en su caso. Pero incluso si es así, se siente mucho mejor. “Sentía náuseas perpetuas, y eso ha disminuido mucho desde que tuve el procedimiento”, dijo. También lo ha hecho la hinchazón y el dolor de estómago. Puede beber una cerveza en un happy hour y no sentirse mal.
Está contenta de que el seguro cubriera el procedimiento, y está aprendiendo a controlar los eructos involuntarios. Sin embargo, no puede eructar sin pensarlo, bromeó.
“Todavía no”, dijo.
Esta historia fue producida por KFF Health News, conocido antes como Kaiser Health News (KHN), una redacción nacional que produce periodismo en profundidad sobre temas de salud y es uno de los principales programas operativos de KFF, la fuente independiente de investigación de políticas de salud, encuestas y periodismo.
Newswise — Since the COVID-19 pandemic, rates of chronic absenteeism have nearly doubled across the nation for students in kindergarten through grade 12.
This increase was tied to the mode of instruction during the early years of the pandemic. In particular, schools that employed virtual learning as the primary teaching mode during the 2020-21 school year experienced a greater increase in chronic absenteeism in the following year. That increase was significantly greater in school districts with higher levels of poverty, according to new research from the University of Notre Dame.
William Evans, the Keough-Hesburgh Professor of Economics and co-founder of Notre Dame’s Wilson Sheehan Lab for Economic Opportunities, co-authored the study with current undergraduate student Kathryn Muchnick and 2024 graduate Olivia Rosenlund. Their work was recently published in the scientific journal JAMA Network Open.
The study analyzed data for two years from more than 11,000 school districts across the United States and found that chronic absenteeism rates increased from 16 percent in 2018-19 to nearly 30 percent in the 2021-22 school year. Students whose schools had full virtual instruction during the pandemic had chronic absenteeism rates that were nearly 7 percentage points higher than those schools that were fully in person, according to the research.
A student is considered chronically absent if he or she misses at least 10 percent of the instructional days in any given school year. That equates to more than three weeks of absences during a 180-day academic year.
As reported in the study, chronic absenteeism has been shown to lead to lower test scores, reduced social and educational interactions, lower rates of high school graduation and increased substance use. The increase in chronic absenteeism began to occur as public schools in the U.S. were attempting to return to pre-pandemic modes of in-person teaching.
Previous studies have indicated that moving away from in-person instruction during the 2020-21 school year to online teaching methods reduced student achievement and educational development, adversely affected children’s mental well-being and decreased school enrollment.
“We’ve learned a lot from the pandemic,” Evans said, “and a lot of work has gone into researching what effects virtual learning has had on students. It’s really difficult when you disrupt their educational experience by going remote.”
Both of Evans’ co-authors were high school students during the pandemic, giving them a uniquely personal perspective on the study’s results. Rosenlund said that when she entered the end of her senior year with fully virtual classes, she and her classmates “definitely had lower motivation to learn during that time compared to when class was fully in person.”
Muchnick added, “The shift in student motivation after online learning [back to in-person] was palpable.”
The research also indicated that chronic absenteeism rates hit at-risk students and school districts with the highest levels of poverty the hardest. Those school districts saw chronic absenteeism soar more than 10 percentage points higher among students who had participated in fully remote instruction, versus in-person learning.
“There is growing evidence that those in the most precarious situations were the ones that were really hurt the most by virtual instruction,” Evans said. “The districts with higher levels of poverty had higher rates of chronic absenteeism already, and they were much more aggressive at using virtual learning during COVID. So you took a vulnerable population, used this method of delivery for educational instruction, and the outcomes for these children are substantially worse.”
Households with lower incomes or fewer resources were less likely to have reliable or high-speed internet service and had far less access to quality computers or technology, making for a less-than-ideal virtual learning environment. “It was pretty detrimental for those kids who were most at risk in the first place,” Evans added, “and now they’ve been pushed further behind as a result of these policies.”
Although the study did not specifically explore the reasons behind the drop in school attendance, it did offer several possible explanations. First, roughly 10 to 20 percent of students were experiencing post-COVID-19 symptoms and may have elected not to go to school for medical and health reasons. Second, there was a corresponding increase in teacher absences and substitute teacher shortages that made students less compelled to go to school. Third, a greater occurrence of mental health issues, which is often coupled with an increased preoccupation with social media, may have kept students at home. Finally, following the pandemic, parents appear to be more willing to allow their children to miss school for a variety of reasons.
With the worst of the pandemic behind us, many parents, school teachers and administrators believe that virtual instruction is here to stay and will continue as a major component of K-12 education, potentially being used as a substitute for in-person teaching under certain circumstances, such as snow days.
“It’s going to be really difficult to put the genie back in the bottle in this context,” Evans said.
Finding a balance of how to use virtual learning in a way that does not negatively impact the students’ overall educational experience will be crucial, according to the researchers.
Rosenlund added, “It’s disheartening that students are still suffering from the negative effects of online learning. I hope that we can consider its implications more carefully going forward.”
The researchers suggest that educators and policymakers examine the evidence when establishing policies and practices related to online learning, particularly for those communities supporting at-risk students, in order to achieve equitable outcomes for all students.
“I think we need to take a more holistic approach in thinking about how to deal with these pandemics in the future,” Evans said.
Contact: Tracy DeStazio, associate director of media relations, 574-631-9958 or [email protected]
When the Indian Health Service can’t provide medical care to Native Americans, the federal agency can refer them elsewhere. But each year, it rejects tens of thousands of requests to fund those appointments, forcing patients to go without treatment or pay daunting medical bills out of their own pockets.
In theory, Native Americans are entitled to free health care when the Indian Health Service foots the bill at its facilities or sites managed by tribes. In reality, the agency is chronically underfunded and understaffed, leading to limited medical services and leaving vast swaths of the country without easy access to care.
Its Purchased/Referred Care program aims to fill gaps by paying outside providers for services patients might be unable to get through an agency-funded clinic or hospital, such as cancer treatment or pregnancy care. But resource shortages, complex rules, and administrative fumbles severely impede access to the referral program, according to patients, elected officials, and people who work with the agency.
The Indian Health Service, part of the Department of Health and Human Services, serves about 2.6 million Native Americans and Alaska Natives.
Native Americans qualify for the referred-care program if they live on tribal land — only 13% do — or within their nation’s “delivery area,” which usually includes surrounding counties. Those who live in another tribe’s delivery area are eligible in limited cases, while Native Americans who live beyond such borders are excluded.
Eligible patients aren’t guaranteed funding or timely help, however. Some of the Indian Health Service’s 170 service units exhaust their annual pool of money or reserve it for the most serious medical concerns.
Referred-care programs denied or deferred nearly $552 million in spending for about 120,000 requests from eligible patients in fiscal year 2022.
As a result, Native Americans might forgo care, increasing the risk of death or serious illness for people with preventable or treatable medical conditions.
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Connie Brushbreaker, a member of the Rosebud Sioux Tribe, has been denied or waitlisted for funding at least 14 times since 2018. She said it doesn’t make sense that the agency sometimes refuses to pay for treatment that will later be approved once a health problem becomes more serious and expensive.
“We try to do this preventative stuff before something gets to the point where you need surgery,” said Brushbreaker, who lives on her tribe’s reservation in South Dakota.
Many Native Americans say the U.S. government is violating its treaties with tribal nations, which often promised to provide for the health and welfare of tribes in return for their land.
“I keep having my elders here saying, ‘There’s treaty rights that say they’re supposed to be able to provide these services to us,’” said Lyle Rutherford, a council member for the Blackfeet Nation in northwestern Montana who said he also worked at the Indian Health Service for 11 years.
Native Americans have high rates of diseases compared with the general population, and a median age of death that’s 14 years younger than that of white people. Researchers who have studied the issue say many problems stem from colonization and government policies such as forcing Indigenous people into boarding schools and isolated reservations and making them give up healthy traditions, including bison hunting and religious ceremonies. They also cite an ongoing lack of health funding.
Congress budgeted nearly $7 billion for the Indian Health Service this year, of which roughly $1 billion is set aside for the referred-care program. A committee of tribal health and government leaders has long made funding recommendations that far exceed the agency’s budget. Its latest report says the Indian Health Service needs $63 billion to cover patients’ needs for fiscal year 2026, including $10 billion for referred care.
Brendan White, an agency spokesperson, said improving the referred-care program is a top goal of the Indian Health Service. He said about 83% of the health units it manages have been able to approve all eligible funding requests this year.
White said the agency recently improved how referred-care programs prioritize such requests and it is tackling staff shortages that can slow down the process. An estimated third of positions within the referred-care program were unfilled as of June, he said.
The Indian Health Service also recently expanded some delivery areas to include more people and is studying whether it can afford to create statewide eligibility in the Dakotas.
Jonni Kroll of the Little Shell Tribe of Chippewa Indians of Montana doesn’t qualify for the referred-care program because she lives in Deer Park, Washington, nearly 400 miles from her tribe’s headquarters.
She said tying eligibility to tribal lands echoes old government policies meant to keep Indigenous people in one place, even if it means less access to jobs, education, and health care.
Kroll, 58, said she sometimes worries about the medical costs of aging. Moving to qualify for the program is unrealistic.
“We have people that live all across the nation,” she said. “What do we do? Sell our homes, leave our families and our jobs?”
People applying for funding face a system so complicated that the Indian Health Service created flowcharts outlining the process.
Misty and Adam Heiden, of Mandan, North Dakota, experienced that firsthand. Their nearest Indian Health Service hospital no longer offers birthing services. So, late last year, Misty Heiden asked the referred-care program to pay for the delivery of their baby at an outside facility.
Heiden, 40, is a member of the Sisseton-Wahpeton Oyate, a South Dakota-based tribe, but lives within the Standing Rock Sioux Tribe’s delivery area. Native Americans who live in another tribe’s area, as she does, are eligible if they have close ties. Even though she is married to a Standing Rock tribal member, Heiden was deemed ineligible by hospital staff.
Now, the family has had to cut into its grocery budget to help pay off more than $1,000 in medical debt.
“It was kind of a slap in the face,” Adam Heiden said.
White, the Indian Health Service spokesperson, said many providers offer educational materials to help patients understand eligibility. But the Standing Rock rules, for example, aren’t fully explained in its brochure.
Connie Brushbreaker’s doctor at the Indian Health Service hospital in Rosebud, South Dakota, said she needed to see an orthopedic surgeon. But hospital staffers said the unit covers only patients at imminent risk of dying.
She said that, at one point, a worker at the referred-care program told her she could handle her pain, which was so intense she had to limit work duties and rely on her husband to put her hair in a ponytail.
“I feel like I am being tossed aside, like I do not matter,” Brushbreaker wrote in an appeal letter. “I am begging you to reconsider.”
The 55-year-old was eventually approved for funding and had surgery this July, two years after injuring her shoulder and four months after her referral.
Brushbreaker had to wait four months for the Indian Health Service to pay for an MRI and surgery she needed. Begging for funding “felt like I had to sell my soul to the IHS gods,” she says.(Matt Gade for KFF Health News)
Patients said they sometimes have trouble reaching referred-care departments due to staffing problems.
Patti Conica, a member of the Standing Rock Sioux Tribe, needed emergency care after developing a serious infection in June 2023. She said she applied for funding to cover the cost but has yet to receive a decision on her case despite repeated phone calls to referred-care staffers and in-person visits.
“I’ve been given the runaround,” said Conica, 58, who lives in Fort Yates, North Dakota, her tribe’s headquarters.
She now faces more than $1,500 in medical bills, some of which have been turned over to a collection agency.
Tyler Tordsen, a Republican state lawmaker and member of the Sisseton-Wahpeton Oyate in South Dakota, says the referred-care program needs more funding but officials could also do a “better job managing their finances.”
Some service units have large amounts of leftover funding. But it’s unclear how much of this money is unspent dollars versus earmarked for approved cases going through billing.
Meanwhile, more tribes are managing their health care facilities — an arrangement that still uses agency money — to try new ways to improve services.
Many also try to help patients receive outside care in other ways. That can include offering free transportation to appointments, arranging for specialists to visit reservations, or creating tribal health insurance programs.
For Brushbreaker, begging for funding “felt like I had to sell my soul to the IHS gods.”
“I’m just tired of fighting the system,” she said.
Have you had an experience navigating the Indian Health Service’s Purchased/Referred Care program that you’d like to share with KFF Health News for our reporting? Tell us here.
This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.
The computer systems run by the consulting giant Deloitte that millions of Americans rely on for Medicaid and other government benefits are prone to errors that can take years and hundreds of millions of dollars to update. While states wait for fixes from Deloitte, beneficiaries risk losing access to health care and food.
Changes needed to fix Deloitte-run eligibility systems often pile on costs to the government that are much higher than the original contracts, which can slow the process of fixing errors.
It has become a big problem across the country. Twenty-five states have awarded Deloitte contracts for eligibility systems, giving the company a stronghold in a lucrative segment of the government benefits business. The agreements, in which the company commits to design, develop, implement, or operate state-owned systems, are worth at least $6 billion, dwarfing any of its competitors, a California Healthline investigation found.
Problems and delays can extend beyond Medicaid — which provides health coverage to roughly 75 million low-income people — because some state systems assess eligibility for other safety-net programs. Whether a person gets the benefits they are entitled to depends on what the computer says.
There is no automatic switch to stop errors in the system, said Elizabeth Edwards, a senior attorney with the National Health Law Program, a nonprofit that advocates for people with low incomes and medically underserved populations. The group in January filed a complaint urging the Federal Trade Commission to investigate Deloitte, alleging “ongoing and nationwide” errors and “unfair and deceptive trade practices.”
“People will go without care,” Edwards said, and until there’s a fix or a workaround, “you will continue to have the harm over and over again.”
Kenneth Smith, a Deloitte executive who leads its national human services division, previously told California Healthline that Medicaid eligibility technology is state-owned and agencies “direct their operation” and “make decisions about the policies and processes that they implement.” Smith has called the legal nonprofit’s allegations “without merit.”
States set aside millions of dollars to cover the cost of changes, but systems may require fixes beyond the agreed-upon work. The number of hours or updates is capped each year, so states are left to prioritize certain fixes over others. And even though Deloitte isn’t reinventing the wheel for each eligibility system it builds or runs, the company addresses problems state by state rather than patching through fixes for systems across states, Smith said — a change request in one state “likely has absolutely nothing to do with another state.”
“Because of the custom nature of these systems, it’s never quite that simplistic as, ‘Hey, a particular issue that’s arisen in state of A is directly applicable to state of B,’” Smith said.
Speaking generally, Smith said, “I’m unaware of any circumstance in which a client has needed to get something done that we haven’t found a way to get it done.”
Deloitte’s estimates show that 35 change requests for Georgia’s eligibility system in 2023 would take more than 104,000 hours of work, according to a list of change requests that California Healthline obtained in response to a public records request. That’s the equivalent of 50 years of work, if someone worked 52 weeks a year at 40 hours a week.
“System changes were made to align with changing federal and state policies, as well as to meet evolving business needs,” said Ellen Brown, a spokesperson for the Georgia Department of Human Services. Brown earlier said changes also were made to “improve functionality.”
The federal government — that is, its taxpayers — covers 90% of states’ costs to develop and implement state Medicaid eligibility systems and pays 75% of ongoing maintenance and operations expenses, according to federal regulations.
Eligibility systems for years have posed problems for states because of the dynamic between contractors and government officials, said Matt Salo, CEO of consulting firm Salo Health Strategies. The companies hold the expertise “and, quite frankly, they’re kind of running circles around the state capacity,” said Salo, a former executive director of the National Association of Medicaid Directors.
“For decades all I’ve heard from states in this arena is: We know that when we go out to contract it’s going to cost us a lot of money and it is going to run over, it is going to deliver years late, it is going to deliver millions if not hundreds of millions of dollars over budget,” Salo said, and “by the time it’s delivered, our needs have changed and so it’s just this constant process of change orders and going back and fixing.”
Going to Court in Florida
Two advocacy groups last August sued Florida in federal court, alleging tens of thousands of people were losing coverage without proper warning. And Florida’s eligibility system was cutting off Medicaid coverage for some moms after giving birth, William Roberts, a state employee who reviews Medicaid eligibility decisions, testified when the case went to trial in July.
Florida previously gave moms two months of Medicaid coverage after giving birth. Federal regulators in 2022 approved Florida’s proposal to grant Medicaid benefits for 12 months. But in April 2023 state officials discovered a “glitch,” Roberts said, and “the system had reverted back to only giving mothers two months instead of giving them the 12 months that they were entitled to.”
What became clear in the testimony is that the state and Deloitte take different views on what constitutes a “defect” in a Deloitte-run system. Deloitte said it would fix defects without billing any additional hours for the work. Although Deloitte is not a named defendant in the lawsuit, the company was called to testify about its role in operating Florida’s eligibility system.
Harikumar Kallumkal, a Deloitte managing director who oversees the Florida system, initially testified that, in this case, there was no problem and “the computer system was providing 12 months” of postpartum coverage.
Then Kallumkal said, “Even in this case, I do not believe it was a defect.” Even so, “we did fix that.” And for the fix, he said, Deloitte “did not charge” the state.
Rather, a separate defect may have resulted in coverage losses for mothers after childbirth, Kallumkal testified.
Some historical data “required to determine postpartum coverage” was not loading into the system, Kallumkal said. “I don’t know how many cases it impacted,” he said, but Deloitte fixed the problem.
The courtroom revelation confirmed what Florida advocates already knew: an eligibility system issue prevented some of the state’s most vulnerable from getting care. Florida denied allegations that it terminated Medicaid coverage without providing adequate notice. The case is ongoing.
When Michigan resumed regular Medicaid eligibility checks following the covid-19 pandemic, advocates saw a concerning trend.
The computer system routinely fails to recognize when certain adults with disabilities should receive Medicaid benefits, said Dawn Calnen, executive director of The Arc of Oakland County, which provides support for those with intellectual and developmental disabilities.
Often a person who qualifies for Medicaid initially for one reason could remain eligible even when life circumstances change. Calnen said there’s no question that the people her group assisted are still eligible, just in a different way than during the pandemic.
The problem is frequent enough that Calnen’s group felt compelled to notify others. “We kind of shout it from the rooftop for people: Know that this is going to happen.”
When asked about the problem, Chelsea Wuth, a spokesperson for Michigan’s Department of Health and Human Services, said there were “no issues” with the system. Deloitte operates Michigan’s eligibility system. The company said it does not comment on state-specific issues.
Tennessee hired Deloitte in 2016 to build an eligibility system after the state canceled a contract with Northrop Grumman due to chronic delays. Deloitte didn’t create the Tennessee system, known as TEDS, from scratch. It built on components from Georgia’s system, according to a legal declaration and a deposition of Kimberly Hagan, Tennessee Medicaid’s director of member services, that were part of a class-action lawsuit that Medicaid beneficiaries filed against the state in 2020.
The lawsuit, which is ongoing and does not name Deloitte as a defendant, seeks to order Tennessee to restore coverage under its Medicaid program, known as TennCare, for those who wrongly lost it. Hagan, in a court filing, said many problems “reflect some unforeseen flaws or gaps” with the Tennessee eligibility system and “some design errors.”
A federal judge on Aug. 26 sided with the Medicaid beneficiaries, ruling that Tennessee violated federal law and the U.S. Constitution. “Poor, disabled, and otherwise disadvantaged Tennesseans should not require luck, perseverance, or zealous lawyering to receive healthcare benefits they are entitled to under the law,” wrote U.S. District Court Judge Waverly D. Crenshaw Jr., adding, “TEDS is flawed, and TennCare knows that it is flawed.”
Tennessee Medicaid spokesperson Amy Lawrence said the state is “determining what our next steps will be.”
Tennessee’s $823 million contract with Deloitte shows that the budget for changes outside the contract’s original scope increased by hundreds of millions of dollars. Deloitte’s maximum compensation for such change orders rose to $417 million under a 2023 contract amendment, up from $103.6 million four years earlier.
Lawrence said state officials “do not and would not pay to fix vendor errors.” Lawrence attributed the cost increases to “system modernization” in “an effort to enhance our citizens’ interactions with the state Medicaid program.” Additional funding was also needed to comply with new federal requirements related to the covid-19 pandemic, she said.
Waiting on Fixes
States sometimes wait so long for Deloitte’s fixes that the staffers who worked on the problems don’t see the results. Jamie Perkins was responsible for making letters easier for Colorado Medicaid enrollees to understand. The letters are generated by Colorado’s Deloitte-run eligibility system. State audits have found that the notices confuse enrollees and contain errors. Perkins said she left her job in 2021, frustrated that many of her fixes hadn’t been implemented.
“It feels like a really perverse reward system, frankly, for Deloitte,” Perkins said. “When Deloitte is themselves making a problem that did not originate with the department, the department is still paying them to fix those problems.”
The state’s contract with Deloitte now outlines “protocols to address issues that are the result of the contractor,” said Trish Grodzicki, a spokesperson for Colorado’s Medicaid agency. As of June 30, Colorado “has made substantial improvements” and a “majority of the letters have been rewritten” and updated in the system, she said.
Deloitte spokesperson Karen Walsh said “a change request can represent a number of different things,” including when states make policy decisions that would warrant system updates. Smith said Deloitte views change requests and system issues, or defects, as different things.
“We have a responsibility when there’s a system issue to fix that,” Walsh said. “We don’t get a change request to fix an issue.”
Yet in Kentucky and other places, states have submitted change orders to resolve issues. Government officials and Deloitte sometimes negotiate fixes for months before they’re implemented.
Kentucky resident Beverly Likens lost Medicaid coverage in June 2023 partly due to an error with the state’s Deloitte-run system. State health officials told a legal aid group in September 2023 that a “change order has been submitted” to fix the glitch, which blocked her new coverage application from getting through online.
Kentucky resident Beverly Likens lost Medicaid coverage in June 2023 partly due to an error with the state’s Deloitte-run eligibility system.(Veronica Turner for KFF Health News)
Likens, with the help of a lawyer, had her Medicaid benefits quickly reinstated, but that was far from the end of the saga. The problem that caused her benefits to lapse was resolved in April — 10 months later — when Kentucky implemented the first phase of a change request, Kentucky’s Cabinet for Health and Family Services told California Healthline.
Agency spokesperson Brice Mitchell said the change request was designed to address a “limitation of the system rather than technical issues.” The request, for which a second phase was implemented in July, cost $522,455 and took more than 3,500 hours of work, according to Mitchell and documents obtained in response to a public records request. All such requests “are thoroughly vetted, negotiated and approved by several areas within the Cabinet,” Mitchell said in an emailed statement.
“These are large, complex system implementations,” Walsh, of Deloitte, said. “So in all of them, you’re going to be able to find a point in time where there was an issue that needed to be fixed. And you can also find millions of people every day who are getting benefits through these systems.”
In February, Georgia officials were discussing a high-priority change request to resolve an ongoing problem: A defect affected potentially tens of thousands of “cases/claims” for families in the Supplemental Nutrition Assistance Program, known as SNAP, and the Temporary Assistance for Needy Families program that, among other problems, led the state to recoup some residents’ entire benefit, according to state documents California Healthline obtained from a public records request. The programs provide monthly cash assistance to low-income people for food and housing. Georgia in 2014 inked a contract with Deloitte to build and maintain its eligibility system, known as Georgia Gateway.
Federal regulations cap how much money the government can recoup if a SNAP recipient was overpaid at 20% or $20, whichever is higher, according to legal aid attorneys and SNAP experts.
“We have plenty of clients who, that is their entire grocery budget,” said Adrianne Freeman, deputy director for litigation and advocacy at the Georgia Legal Services Program.
The defect — which Georgia DHS’ Brown said was identified on April 29, 2022 — created several problems, including incorrect calculations of how much to recoup and clawbacks not occurring on the correct start dates. “The Gateway system did not consistently adjust or apply the recoupment amount correctly,” Brown said.
A fix was deployed the weekend of Feb. 17, the documents state, but a formal change request was needed to “allow the State Agency (SA) to correctly apply allotment reductions to all SNAP and TANF cases impacted by Defect 21068,” the documents state. The change order would allow state officials to run an automated one-time mass update to fully resolve the problem.
The target date for doing so: March 1. That was nearly two years after officials were provided an “original report” noting that more than 25,000 cases may have been affected, the documents state.
Relying on Workarounds
States often face constraints on how many changes can be made in a year. In Texas, there is a years-long waitlist for changes, according to advocates, state documents, and the state health agency. “The system isn’t nimble enough to meet the needs and often relies really heavily on manual workarounds,” said Stacey Pogue, a senior research fellow at Georgetown University’s Center on Health Insurance Reforms with expertise on Medicaid in Texas.
Texas eligibility workers use workarounds to process applications while awaiting permanent fixes. Deloitte said in its $295 million Texas contract that “there is a real need” for workarounds, which allow operations to continue “without affecting client benefits.”
Many of these “temporary” fixes were implemented years ago and were still in use in 2023, according to records obtained by California Healthline that found 45 active workarounds in Texas last year. In one instance, a workaround was implemented nearly 14 years ago. Deloitte acknowledged in its Texas contract that reducing workarounds “is one of the top priorities.”
Smith of Deloitte said it doesn’t always take months to fix a problem: “We have changes that get implemented in a day and changes that get implemented in a month.”
Further, Smith said, Deloitte “is one part of implementing a change,” noting “we’re often not necessarily the constraint.”
The state considers several factors when assessing which fixes to tackle first, including how many beneficiaries are affected. The more complex the workaround, “the longer it may take for staff to process eligibility,” said Jennifer Ruffcorn, a spokesperson for Texas Health and Human Services.
In Florida — in addition to the lapses in coverage for maternal care — the National Health Law Program and the Florida Health Justice Project alleged in their lawsuit in federal court that notices to Medicaid beneficiaries alerting them their benefits would be terminated did not explain the basis for the decision.
In October, about a month after the lawsuit was filed, the state asked Deloitte to provide an estimate to alter the notices, Kallumkal of Deloitte testified at trial in August.
Deloitte estimated it would need roughly 28,000 hours, he said. That’s more than twice the 12,600 hours the state sets aside each year to pay Deloitte for revisions. The extra hours would require an amended contract in which the state would have to agree to pay more. Florida’s Department of Children and Families did not respond to requests for comment.
For Deloitte, extra hours mean more revenue, Kallumkal acknowledged during his testimony while under cross-examination. Deloitte subsequently provided the state with a new estimate for a narrower scope of work that would take 12,000 hours, he said.
This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.
Even as federal aid poured into state budgets in response to the covid-19 pandemic, public health leaders warned of a boom-and-bust funding cycle on the horizon as the emergency ended and federal grants sunsetted. Now, that drought has become reality and state governments are slashing budgets that feed local health departments.
Congress allotted more than $800 billion to support states’ covid responses, fueling a surge in the public health workforce nationwide.
Local health department staffing grew by about 19% from 2019 to 2022, according to a report from the National Association of County and City Health Officials that studied 2,512 of the nation’s roughly 3,300 local departments. That same report explained that half of their revenue in 2022 came from federal sources.
But those jobs, and the safety net they provide for the people in the communities served, are vulnerable as the money dries up, worrying public health leaders — particularly in sparsely populated, rural areas, which already faced long-standing health disparities and meager resources.
Officials in such states as Montana, California, Washington, and Texas now say they face budget cuts and layoffs. Public health experts warn the accompanying service cuts — functions like contact tracing, immunizations, family planning, restaurant inspections, and more — could send communities into crisis.
In California, Democratic Gov. Gavin Newsom proposed cutting the state’s public health funding by $300 million. And the Washington Department of Health slashed more than 350 positions at the end of last year and anticipated cutting 349 more this year as the state’s federal covid funding runs dry.
“You cannot hire firefighters when the house is already burning,” said Brian Castrucci, president and CEO of the de Beaumont Foundation, an organization that advocates for public health policy.
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In some places, that pandemic cash did little more than keep small health departments afloat. The Central Montana Health District, the public health agency for five rural counties, did not receive the same flood of money others saw but did get enough to help the staff respond to an increased workload, including testing, contact tracing, and rolling out covid vaccines.
The department filled a vacancy with a federal grant funneled through the state when a staffer left during the pandemic. The federal funding allowed the department to break even, said Susan Woods, the district’s public health director.
Now, there are five full-time employees working for the health district. Woods said the team is getting by with its slim resources, but a funding dip or another public health emergency could tip the balance in the wrong direction.
“Any kind of crisis, any kind of, God forbid, another pandemic, would probably send us crashing,” Woods said.
Adriane Casalotti, chief of government and public affairs for the National Association of County and City Health Officials, said she expects to see layoffs and health department budget cuts intensify. Those cuts will come as health officials address issues that took a back seat during the pandemic, like increases in rates of sexually transmitted diseases, suicide, and substance misuse.
“There’s tons of work being done right now to pick up the pieces on those types of other public health challenges,” she said. But it’ll be hard to catch up with whittled resources.
From 2018 to 2022, reports of chlamydia, gonorrhea, syphilis, and congenital syphilis increased by nearly 2% nationwide, adding up to more than 2.5 million cases. A recent KFF report found that routine vaccination rates for kindergarten-age children have not rebounded to pre-pandemic levels while the number of families claiming exemptions has increased. Nearly three-quarters of states did not meet the federal target vaccination rate of 95% for the 2022-23 school year for measles, mumps, and rubella, increasing the risk of outbreaks.
Amid these challenges, public health leaders are clinging to the resources they gained during the past few years.
The health district in Lubbock, Texas, a city of more than 250,000 people in the state’s Panhandle, hired four disease intervention specialists focused on sexually transmitted diseases during the pandemic due to a five-year grant from the Centers for Disease Control and Prevention.
The positions came as syphilis cases in the state skyrocket past levels seen in the past decade and the increases in congenital syphilis surpass the national average, according to the CDC. State officials recorded 922 congenital syphilis cases in 2022, with a 246.8 rate per 100,000 live births.
But federal officials, facing their own shrinking budget, cut the grant short by two years, leaving the district scrambling to fill a nearly $400,000 annual budget gap while working to tamp down the outbreak.
“Even with the funding, it’s very hard for those staff to keep up with cases and to actually make sure that we get everybody treated,” said Katherine Wells, director of public health for Lubbock.
Wells said state officials may redirect other federal money from the budget to keep the program going when the grant ends in December. Wells and other health leaders in the state consistently plead with state officials for more money but, Wells said, “whether or not we’ll be successful with that in a state like Texas is very much in the air.”
Making public health a priority in the absence of a national crisis is a challenge, Castrucci said. “The boom-and-bust funding cycle is a reflection of the attention of the American public,” he said; as the emergency sunsetted, so too did enthusiasm wane for public health issues.
And rural health departments, like the one in central Montana, deserve more attention, said Casalotti, the advocate for county and city health officials. That’s because they serve a critical function in communities that continue to see hospital closures and lose other health services, such as maternity and women’s care. Local health departments can function as a “safety net for the safety net,” she said.
