LODGE GRASS, Mont. — Brothers Lonny and Teyon Fritzler walked amid the tall grass and cottonwood trees surrounding their boarded-up childhood home near the Little Bighorn River and daydreamed about ways to rebuild.

The rolling prairie outside the single-story clapboard home is where Lonny learned from their grandfather how to break horses. It’s where Teyon learned from their grandmother how to harvest buffalo berries. It’s also where they watched their father get addicted to meth.

Teyon, now 34, began using the drug at 15 with their dad. Lonny, 41, started after college, which he said was partly due to the stress of caring for their grandfather with dementia. Their own addictions to meth persisted for years, outlasting the lives of both their father and grandfather.

It took leaving their home in Lodge Grass, a town of about 500 people on the Crow Indian Reservation, to recover. Here, methamphetamine use is widespread.

The brothers stayed with an aunt in Oklahoma as they learned to live without meth. Their family property has sat empty for years — the horse corral’s beams are broken and its roof caved in, the garage tilts, and the house needs extensive repairs. Such crumbling structures are common in this Native American community, hammered by the effects of meth addiction. Lonny said some homes in disrepair would cost too much to fix. It’s typical for multiple generations to crowd under one roof, sometimes for cultural reasons but also due to the area’s housing shortage.

“We have broken-down houses, a burnt one over here, a lot of houses that are not livable,” Lonny said as he described the few neighboring homes.

In Lodge Grass, an estimated 60% of the residents age 14 and older struggle with drug or alcohol addictions, according to a local survey contracted by the Mountain Shadow Association, a local, Native-led nonprofit. For many in the community, the buildings in disrepair are symbols of that struggle. But signs of renewal are emerging. In recent years, the town has torn down more than two dozen abandoned buildings. Now, for the first time in decades, new businesses are going up and have become new symbols — those of the town’s effort to recover from the effects of meth.

One of those new buildings, a day care center, arrived in October 2024. A parade of people followed the small, wooden building through town as it was delivered on the back of a truck. It replaced a formerly abandoned home that had tested positive for traces of meth.

“People were crying,” said Megkian Doyle, who heads the Mountain Shadow Association, which opened the center. “It was the first time that you could see new and tangible things that pulled into town.”

The nonprofit is also behind the town’s latest construction project: a place where families together can heal from addiction. The plan is to build an entire campus in town that provides mental health resources, housing for kids whose parents need treatment elsewhere, and housing for families working to live without drugs and alcohol.

Though the project is years away from completion, locals often stop by to watch the progress.

“There is a ground-level swell of hope that’s starting to come up around your ankles,” Doyle said.

Two of the builders on that project are Lonny and Teyon Fritzler. They see the work as a chance to help rebuild their community within the Apsáalooke Nation, also known as the Crow Tribe.

“When I got into construction work, I actually thought God was punishing me,” Lonny said. “But now, coming back, building these walls, I’m like, ‘Wow. This is ours now.’”

Meth ‘Never Left’

Meth use is a long-standing public health epidemic throughout the U.S. and a growing contributor to the nation’s overdose crisis. The drug had been devastating in Indian Country, a term that encompasses tribal jurisdictions and certain areas with Native American populations.

Native Americans face the highest rates of meth addiction in the U.S. compared with any other demographic group.

“Meth has never left our communities,” said A.C. Locklear, CEO of the National Indian Health Board, a nonprofit that works to improve health in Indian Country.

Many reservations are in rural areas, which have higher rates of meth use compared with cities. As a group, Native Americans face high rates of poverty, chronic disease, and mental illness — all are risk factors for addiction. These conditions are rooted in more than a century of systemic discrimination, a byproduct of colonization. Meanwhile, the Indian Health Service, which provides health care to Native Americans, has been chronically underfunded. Cutbacks under the Trump administration have shrunk health programs nationwide.

LeeAnn Bruised Head, a recently retired public health adviser with the U.S. Public Health Service Commissioned Corps, said that despite the challenges, tribal nations have developed strong survival skills drawing from their traditions. For example, Crow people have held onto their nation’s language; neighbors are often family, or considered such; and many tribal members rely on their clans to mentor children, who eventually become mentors themselves for the next generation.

“The strength here, the support here,” said Bruised Head, who is part of the Crow Tribe. “You can’t get that anywhere else.”

Signs of Rebuilding

On a fall day, Quincy Dabney greeted people arriving for lunch at the Lodge Grass drop-in center. The center recently opened in a former church as a place where people can come for help to stay sober or for a free meal. Dabney volunteers at the center. He’s also the town’s mayor.

Dabney helped organize community cleanup days starting in 2017, during which people picked up trash in yards and alongside roads. The focus eventually shifted to tearing down empty, condemned houses, which Dabney said had become spots to sell, distribute, and use meth, often during the day as children played nearby.

“There was nothing stopping it here,” Dabney said.

The problem hasn’t disappeared, though. In 2024, officials broke up a multistate trafficking operation based on the Crow reservation that distributed drugs to other Montana reservations. It was one example of how drug traffickers have targeted tribal nations as sales and distribution hubs.

A few blocks from where Dabney spoke stood the remains of a stone building where someone had spray-painted “Stop Meth” on its roofless walls. Still, there are signs of change, he said.

Dabney pointed across the street to a field where a trailer had sat empty for years before the town removed it. The town was halfway through tearing down another home in disrepair on the next block. Another house on the same street was being cleaned up for an incoming renter: a new mental health worker at the drop-in center.

Just down the road, work was underway on the new campus for addiction recovery, called Kaala’s Village. Kaala means “grandmother” in Crow.

The site’s first building going up is a therapeutic foster home. Plans include housing to gradually reunite families, a community garden, and a place to hold ceremonies. Doyle said the goal is that, eventually, residents can help build their own small homes, working with experienced builders trained to provide mental health support.

She said one of the most important aspects of this work “is that we finish it.”

Tribal citizens and organizations have said the political chaos of Trump’s first year back in office shows the problem with relying on federal programs. It underscores the need for more grassroots efforts, like what’s unfolding in Lodge Grass. But a reliable system to fund those efforts still doesn’t exist. Last year’s federal grant and program cuts also fueled competition for philanthropic dollars.

Kaala’s Village is expected to cost $5 million. The association is building in phases as money comes in. Doyle said the group hopes to open the foster home by spring, and family housing the following year.

The site is a few minutes’ drive from Lonny and Teyon’s childhood home. In addition to building the new facility’s walls, they’re getting training to offer mental health support. Eventually, they hope to work alongside people who come home to Kaala’s Village.

As for their own home, they hope to restore it — one room at a time.

“Just piece by piece,” Lonny said. “We’ve got to do something. We’ve got these young ones watching.”

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El gobierno federal ha reducido drásticamente la cantidad de vacunas infantiles recomendadas, dejando fuera seis inmunizaciones de rutina que han protegido a millones de personas de enfermedades graves, discapacidades a largo plazo y muertes.

Solo tres de las seis vacunas que los Centros para el Control y la Prevención de Enfermedades (CDC, por sus siglas en inglés) dejarán de recomendar de manera rutinaria —contra la hepatitis A, hepatitis B y el rotavirus— han prevenido casi 2 millones de hospitalizaciones y más de 90.000 muertes en los últimos 30 años, según publicaciones de la misma entidad.

Las vacunas contra esas tres enfermedades, así como contra el virus respiratorio sincitial (VRS), la enfermedad meningocócica, la gripe y covid, ahora solo se recomiendan para niños con alto riesgo de enfermedad grave o luego de “tomar decisiones clínicas de manera compartida”, es decir, una consulta entre médicos y padres.

Los CDC mantienen sus recomendaciones para 11 vacunas infantiles: contra el sarampión, las paperas y la rubéola; la tos ferina, el tétanos y la difteria; la enfermedad bacteriana conocida como Hib; la neumonía; la polio; la varicela; y el virus del papiloma humano (VPH).

Según una hoja informativa del Departamento de Salud y Servicios Humanos (HHS, por sus siglas en inglés), los seguros médicos públicos y privados seguirán cubriendo las vacunas contra las enfermedades que los CDC ya no recomiendan de manera universal; los padres que quieran vacunar a sus hijos contra esas enfermedades no tendrán que pagar las dosis de su bolsillo.

Expertos en enfermedades infantiles se mostraron desconcertados ante el cambio en la guía. El HHS explicó que las modificaciones se hicieron tras “una revisión científica de la evidencia” y que están alineadas con programas de vacunación de otros países desarrollados.

El secretario del HHS, Robert F. Kennedy Jr., un activista antivacunas, señaló a Dinamarca como modelo. Sin embargo, los calendarios de vacunación de la mayoría de los países europeos son más parecidos al estándar estadounidense que acaba de modificarse.

Por ejemplo, Dinamarca, que no vacuna contra el rotavirus, registra cerca de 1.200 hospitalizaciones al año por esta infección  en bebés y niños pequeños. Esa tasa, en un país de 6 millones de habitantes, es similar a la que tenía Estados Unidos antes de introducir la vacuna.

“Ellos aceptan tener 1.200 o 1.300 niños hospitalizados, lo cual es solo la punta del iceberg en cuanto al sufrimiento infantil”, dijo Paul Offit, director del Centro de Educación sobre Vacunas del Hospital Infantil de Philadelphia y coinventor de una vacuna contra el rotavirus aprobada. “Nosotros no lo aceptamos. Deberían tratar de imitarnos a nosotros, no al revés”.

Funcionarios de salud pública señalaron que la nueva guía pone sobre los padres la responsabilidad de investigar y comprender cada vacuna infantil y por qué es importante.

El siguiente es un resumen de las enfermedades que previenen las vacunas que se han dejado de lado:

VRS. El virus respiratorio sincitial es la causa más común de hospitalización en bebés en Estados Unidos.

Este virus respiratorio suele circular en otoño e invierno y provoca síntomas parecidos a los de un resfriado, aunque puede ser mortal para los niños pequeños. Cada año causa decenas de miles de hospitalizaciones y cientos de muertes. Según la Fundación Nacional de Enfermedades Infecciosas (National Foundation for Infectious Diseases), aproximadamente el 80% de los niños menores de 2 años hospitalizados con el VRS no tienen factores de riesgo identificables. Las esperadas vacunas contra esta enfermedad se introdujeron en 2023.

Hepatitis A. La vacunación contra la hepatitis A, que se empezó a aplicar gradualmente a finales de los años 90 y se recomendó para todos los niños pequeños a partir de 2006, ha provocado una reducción de más del 90% de los casos desde 1996. Este virus transmitido por alimentos causa una enfermedad muy desagradable que aún afecta a adultos, especialmente personas sin hogar o que consumen drogas o alcohol. En 2023 se reportaron un total de 1.648 casos y 85 muertes.

Hepatitis B. Esta enfermedad provoca cáncer de hígado, cirrosis y otros padecimientos graves, y es particularmente peligrosa cuando la contraen bebés o niños pequeños. El virus de la hepatitis B se transmite por sangre y otros fluidos corporales, incluso en cantidades microscópicas, y puede sobrevivir en superficies durante una semana. Entre 1990 y 2019, la vacunación generó una reducción del 99% en los casos reportados de hepatitis B aguda en niños y adolescentes. El cáncer de hígado en menores también ha disminuido considerablemente gracias a la vacunación infantil universal. Sin embargo, el virus sigue presente, con entre 2.000 y 3.000 casos agudos reportados cada año entre adultos no vacunados. En 2023 se diagnosticaron más de 17.000 casos de hepatitis B crónica. Los CDC estiman que cerca de la mitad de las personas infectadas no saben que lo están.

Rotavirus. Antes de que comenzara la administración rutinaria de las actuales vacunas contra el rotavirus, en 2006, cada año se internaban a unos 70.000 niños pequeños, y morían alrededor de 50 a causa del virus. “Se conocía como el síndrome del vómito invernal”, explicó Sean O’Leary, pediatra de la Universidad de Colorado. “Era una enfermedad terrible, que casi ya no vemos”.

Sin embargo, el virus sigue siendo común en las superficies que tocan los bebés, y “si bajan las tasas de vacunación, habrá de nuevo niños hospitalizados”, advirtió Offit.

Vacunas meningocócicas. Estas vacunas han sido requeridas principalmente para adolescentes y estudiantes universitarios, quienes son especialmente vulnerables a enfermedades graves causadas por esta bacteria. En Estados Unidos se reportan entre 600 y 1.000 casos al año, pero más del 10% de los enfermos mueren, y 1 de cada 5 sobrevivientes queda con discapacidades permanentes.

Gripe y covid. Estos dos virus respiratorios han causado la muerte de cientos de niños en años recientes, aunque suelen ser más graves en adultos mayores. Actualmente hay un repunte de la gripe en el país, y durante la temporada pasada murieron 289 menores por esta causa.

¿Qué es la toma de decisiones clínicas compartida?

Con los nuevos cambios, la decisión de vacunar a los niños contra la gripe, covid, el rotavirus, la enfermedad meningocócica y las hepatitis A y B dependerá ahora de lo que las autoridades llaman “toma de decisiones clínicas compartida”, es decir, que las familias deberán consultar con un proveedor de salud para determinar si la vacuna es apropiada para sus hijos.

“Significa que el proveedor debe tener una conversación con el paciente para explicar los riesgos y beneficios y tomar una decisión personalizada”, dijo Lori Handy, especialista en enfermedades infecciosas pediátricas del Hospital Infantil de Philadelphia.

Antes, los CDC usaban ese término solo en circunstancias muy específicas, como al decidir si una persona en una relación monógama necesitaba la vacuna contra el VPH, que previene una infección de transmisión sexual y ciertos tipos de cáncer.

Según Handy, el nuevo enfoque de los CDC no se alinea con la evidencia científica, dado el beneficio protector comprobado que las vacunas ofrecen a la gran mayoría de la población.

En su informe justificando los cambios, los funcionarios del HHS Tracy Beth Høeg y Martin Kulldorff afirmaron que el sistema de vacunación de Estados Unidos requiere más investigación sobre seguridad y mayor elección por parte de los padres. Dijeron que la pérdida de confianza en la salud pública, causada en parte por un calendario de vacunación demasiado extenso, ha llevado a más familias a rechazar vacunas contra amenazas importantes como el sarampión.

Las vacunas en el calendario que fue modificado por los CDC ya contaban con amplia investigación sobre seguridad cuando fueron evaluadas y aprobadas por la Administración de Alimentos y Medicamentos (FDA, por sus siglas en inglés).

“Estas vacunas tienen un estándar de seguridad más alto que cualquier otra intervención médica que tenemos”, dijo Handy. “El valor de las recomendaciones rutinarias es que ayudan al público a entender que estas vacunas han sido examinadas por todos lados”.

Eric Ball, pediatra en el condado de Orange, California, apuntó que el cambio en la guía provocará más confusión entre los padres, quienes podrían pensar que es la seguridad de una vacuna lo que está en duda.

“Para la salud pública, es fundamental que las recomendaciones sobre vacunas sean muy claras y precisas”, dijo Ball. “Cualquier cosa que genere confusión solo llevará a que más niños se enfermen”.

Ball explicó que, en lugar de enfocarse en las necesidades médicas del niño, muchas veces tiene que usar el tiempo limitado de consulta para asegurar a los padres que las vacunas son seguras. El hecho de que una vacuna quede bajo “toma de decisiones clínicas compartida” no tiene nada que ver con preocupaciones de seguridad, pero muchos padres podrían interpretarlo así.

Los cambios del HHS no afectan las leyes estatales de vacunación y, por lo tanto, deberían permitir que los médicos responsables sigan recomendando las vacunas como hasta ahora, según Richard Hughes IV, abogado y profesor en la Universidad George Washington, quien lidera demandas contra Kennedy por los cambios en materia de vacunas.

“Uno puede esperar que cualquier pediatra siga la evidencia científica sólida y recomiende que sus pacientes se vacunen”, dijo. La ley protege a los proveedores que siguen las pautas profesionales de atención, agregó, y “el VRS, la enfermedad meningocócica y las hepatitis siguen siendo amenazas graves para la salud de los niños en este país”.

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NEW ORLEANS — Elyse Stevens had a reputation for taking on complex medical cases. People who’d been battling addiction for decades. Chronic-pain patients on high doses of opioids. Sex workers and people living on the street.

“Many of my patients are messy, the ones that don’t know if they want to stop using drugs or not,” said Stevens, a primary care and addiction medicine doctor.

While other doctors avoided these patients, Stevens — who was familiar with the city from her time in medical school at Tulane University — sought them out. She regularly attended 6 a.m. breakfasts for homeless people, volunteered at a homeless shelter clinic on Saturdays, and, on Monday evenings, visited an abandoned Family Dollar store where advocates distributed supplies to people who use drugs.

One such evening about four years ago, Charmyra Harrell arrived there limping, her right leg swollen and covered in sores. Emergency room doctors had repeatedly dismissed her, so she eased the pain with street drugs, Harrell said.

Stevens cleaned her sores on Mondays for months until finally persuading Harrell to visit the clinic at University Medical Center New Orleans. There, Stevens discovered Harrell had diabetes and cancer.

She agreed to prescribe Harrell pain medication — an option many doctors would automatically dismiss for fear that a patient with a history of addiction would misuse it.

But Stevens was confident Harrell could hold up her end of the deal.

“She told me, ‘You cannot do drugs and do your pain meds,’” Harrell recounted on a Monday evening in October. So, “I’m no longer on cocaine.”

Stevens’ approach to patient care has won her awards and nominations in medicine, community service, and humanism. Instead of seeing patients in binaries — addicted or sober, with a positive or negative drug test — she measures progress on a spectrum. Are they showering daily, cooking with their families, using less fentanyl than the day before?

But not everyone agrees with this flexible approach that prioritizes working with patients on their goals, even if abstinence isn’t one of them. And it came to a head in the summer of 2024.

“The same things I was high-fived for thousands of times — suddenly that was bad,” Stevens said.

Flexible Care or Slippery Slope?

More than 80% of Americans who need substance use treatment don’t receive it, national data shows. Barriers abound: high costs, lack of transportation, clinic hours that are incompatible with jobs, fear of being mistreated.

Some doctors had been trying to ease the process for years. Covid-19 accelerated that trend. Telehealth appointments, fewer urine drug tests, and medication refills that last longer became the norm.

The result?

“Patients did OK and we actually reached more people,” said Brian Hurley, immediate past president of the American Society of Addiction Medicine. The organization supports continuing flexible practices, such as helping patients avoid withdrawal symptoms by prescribing higher-than-traditional doses of addiction medication and focusing on recovery goals other than abstinence.

But some doctors prefer traditional approaches that range from zero tolerance for patients using illegal drugs to setting stiff consequences for those who don’t meet their doctors’ expectations. For example, a patient who tests positive for street drugs while getting outpatient care would be discharged and told to go to residential rehab. Proponents of this method fear loosening restrictions could be a slippery slope that ultimately harms patients. They say continuing to prescribe painkillers, for example, to people using illicit substances long-term could normalize drug use and hamper the goal of getting people off illegal drugs.

Progress should be more than keeping patients in care, said Keith Humphreys, a Stanford psychologist, who has treated and researched addiction for decades and supports involuntary treatment.

“If you give addicted people lots of drugs, they like it, and they may come back,” he said. “But that doesn’t mean that that is promoting their health over time.”

Flexible practices also tend to align with harm reduction, a divisive approach that proponents say keeps people who use drugs safe and that critics — including the Trump administration — say enables illegal drug use.

The debate is not just philosophical. For Stevens and her patients, it came to bear on the streets of New Orleans.

‘Unconventional’ Prescribing

In the summer of 2024, supervisors started questioning Stevens’ approach.

In emails reviewed by KFF Health News, they expressed concerns about her prescribing too many pain pills, a mix of opioids and other controlled substances to the same patients, and high doses of buprenorphine, a medication considered the gold standard to treat opioid addiction.

Supervisors worried Stevens wasn’t doing enough urine drug tests and kept treating patients who used illicit drugs instead of referring them to higher levels of care.

“Her prescribing pattern appears unconventional compared to the local standard of care,” the hospital’s chief medical officer at the time wrote to Stevens’ supervisor, Benjamin Springgate. “Note that this is the only standard of care which would likely be considered should a legal concern arise.”

Springgate forwarded that email to Stevens and encouraged her to refer more patients to methadone clinics, intensive outpatient care, and inpatient rehab.

Stevens understood the general practice but couldn’t reconcile it with the reality her patients faced. How would someone living in a tent, fearful of losing their possessions, trek to a methadone clinic daily?

Stevens sent her supervisors dozens of research studies and national treatment guidelines backing her flexible approach. She explained that if she stopped prescribing the medications of concern, patients might leave the health system, but they wouldn’t disappear.

“They just wouldn’t be getting care and perhaps they’d be dead,” she said in an interview with KFF Health News.

Both University Medical Center and LSU Health New Orleans, which employs physicians at the hospital, declined repeated requests for interviews. They did not respond to detailed questions about addiction treatment or Stevens’ practices.

Instead, they provided a joint statement from Richard DiCarlo, dean of the LSU Health New Orleans School of Medicine, and Jeffrey Elder, chief medical officer of University Medical Center New Orleans.

“We are not at liberty to comment publicly on internal personnel issues,” they wrote.

“We recognize that addiction is a serious public health problem, and that addiction treatment is a challenge for the healthcare industry,” they said. “We remain dedicated to expanding access to treatment, while upholding the highest standard of care and safety for all patients.”

Not Black-and-White

KFF Health News shared the complaints against Stevens and the responses she’d written for supervisors with two addiction medicine doctors outside of Louisiana, who had no affiliation with Stevens. Both found her practices to be within the bounds of normal addiction care, especially for complex patients.

Stephen Loyd, an addiction medicine doctor and the president of Tennessee’s medical licensing board, said doctors running pill mills typically have sparse patient notes that list a chief complaint of pain. But Stevens’ notes detailed patients’ life circumstances and the intricate decisions she was making with them.

“To me, that’s the big difference,” Loyd said.

Some people think the “only good answer is no opioids,” such as oxycodone or hydrocodone, for any patients, said Cara Poland, an addiction medicine doctor and associate professor at Michigan State University. But patients may need them — sometimes for things like cancer pain — or require months to lower their doses safely, she said. “It’s not as black-and-white as people outside our field want it to be.”

Humphreys, the Stanford psychologist, had a different take. He did not review Stevens’ case but said, as a general practice, there are risks to prescribing painkillers long-term, especially for patients using today’s lethal street drugs too.

Overprescribing fueled the opioid crisis, he said. “It’s not going to go away if we do that again.”

‘The Thing That Kills People’

After months of tension, Stevens’ supervisors told her on March 10 to stop coming to work. The hospital was conducting a review of her practices, they said in an email viewed by KFF Health News.

Overnight, hundreds of her patients were moved to other providers.

Luka Bair had been seeing Stevens for three years and was stable on daily buprenorphine.

After Stevens’ departure, Bair was left without medication for three days. The withdrawal symptoms were severe — headache, nausea, muscle cramps.

“I was just in physical hell,” said Bair, who works for the National Harm Reduction Coalition and uses they/them pronouns.

Although Bair eventually got a refill, Springgate, Stevens’ supervisor, didn’t want to continue the regimen long-term. Instead, Springgate referred Bair to more intensive and residential programs, citing Bair’s intermittent use of other drugs, including benzodiazepines and cocaine, as markers of high risk. Bair “requires a higher level of care than our clinic reasonably can offer,” Springgate wrote in patient portal notes reviewed by KFF Health News.

But Bair said daily attendance at those programs was incompatible with their full-time job. They left the clinic, with 30 days to find a new doctor or run out of medication again.

“This is the thing that kills people,” said Bair, who eventually found another doctor willing to prescribe.

Springgate did not respond to repeated calls and emails requesting comment.

University Medical Center and LSU Health New Orleans did not answer questions about discharging Stevens’ patients.

‘Reckless Behavior’

About a month after Stevens was told to stay home, Haley Beavers Khoury, a medical student who worked with her, had collected nearly 100 letters from other students, doctors, patients, and homelessness service providers calling for Stevens’ return.

One student wrote, “Make no mistake — some of her patients will die without her.” A nun from the Daughters of Charity, which ran the hospital’s previous incarnation, called Stevens a “lifeline” for vulnerable patients.

Beavers Khoury said she sent the letters to about 10 people in hospital and medical school leadership. Most did not respond.

In May, the hospital’s review committee determined Stevens’ practices fell “outside of the acceptable community standards” and constituted “reckless behavior,” according to a letter sent to Stevens.

The hospital did not answer KFF Health News’ questions about how it reached this conclusion or if it identified any patient harm.

Meanwhile, Stevens had secured a job at another New Orleans hospital. But because her resignation came amid the ongoing investigation, University Medical Center said it was required to inform the state’s medical licensing board.

The medical board began its own investigation — a development that eventually cost Stevens the other job offer.

In presenting her side to the medical board, Stevens repeated many arguments she’d made before. Yes, she was prescribing powerful medications. No, she wasn’t making clinical decisions based on urine drug tests. But national addiction organizations supported such practices and promoted tailoring care to patients’ circumstances, she said. Her response included a 10-page bibliography with 98 citations.

Liability

The board’s investigation into Stevens is ongoing. Its website shows no action taken against her license as of late December.

The board declined to comment on both Stevens’ case and its definition of appropriate addiction treatment.

In October, Stevens moved to the Virgin Islands to work in internal medicine at a local hospital. She said she’s grateful for the welcoming locals and the financial stability to support herself and her parents.

But it hurts to think of her former patients in New Orleans.

Before leaving, Stevens packed away handwritten letters from several of them — one was 15 pages long, written in alternating green and purple marker — in which they shared childhood traumas and small successes they had while in treatment with her.

Stevens doesn’t know what happened to those patients after she left.

She believes the scrutiny of her practices centers on liability more than patient safety.

But, she said, “liability is in abandoning people too.”

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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ALEXANDER, Carolina del Norte — Aubreigh Osborne tiene una nueva amiga.

Vestida de azul y con un gran moño en sus rizos rubios, la niña de 3 años se sentó en el regazo de su madre pronunciando con cuidado el nombre de una compañerita de clase después de escuchar las palabras “mejor amiga”. Hace apenas unos meses, Gaile Osborne no esperaba que su hija adoptiva hiciera amistades en la escuela.

Diagnosticada con autismo a los 14 meses, Aubreigh Osborne comenzó este año a tener dificultades para controlar sus perretas y, en ocasiones, se autolesionaba. Su dificultad para interactuar socialmente hizo que su familia evitara salir en público. Pero este verano comenzó a recibir una terapia llamada de “análisis de comportamiento aplicado”, conocida como ABA en inglés, que suele utilizarse para ayudar a personas con autismo a mejorar sus habilidades sociales y de comunicación.

Desde entonces, empezó el preescolar, ha comido con mayor regularidad, logró dejar el pañal, acompaña a su madre al supermercado sin incidentes y conoció a quien es su mejor amiga. Todo eso, por primera vez en su corta vida.

“Eso es lo que ABA nos está dando: momentos de normalidad”, dijo Osborne.

Pero en octubre, las horas de terapia de Aubreigh se redujeron abruptamente de 30 a 15 por semana, como parte de una iniciativa estatal para recortar el gasto de Medicaid.

Otras familias en el país también han visto restringido su acceso a esta terapia mientras funcionarios estatales aplican recortes importantes al programa: el seguro de salud público que cubre a personas con bajos ingresos y con discapacidades. Carolina del Norte recortó en 10% los pagos a proveedores de ABA. Nebraska redujo casi 50% los pagos para algunos de estos servicios. En Colorado e Indiana, entre otros estados, también consideran reducciones.

Estos recortes llegan cuando el gasto de Medicaid en esta terapia se ha disparado en los últimos años. Los pagos por ABA en Carolina del Norte fueron de $122 millones en el año fiscal 2022 y se proyecta que lleguen a $639 millones en 2026, un aumento del 423%. En Nebraska, el gasto aumentó 1.700% en los últimos años. En Indiana, el incremento fue de 2.800%.

El aumento en el diagnóstico y la conciencia sobre el autismo ha hecho que más familias busquen tratamiento para sus hijos, que puede ir de 10 a 40 horas semanales de servicios, según Mariel Fernandez, vicepresidenta de asuntos gubernamentales del Consejo de Proveedores de Servicios para el Autismo (Council of Autism Service Providers).

Además, la cobertura de esta terapia por Medicaid es relativamente reciente. El gobierno federal ordenó a los estados cubrir tratamientos para el autismo en 2014, pero no todos incluían ABA, considerada por Fernandez como el “estándar de oro”, hasta 2022.

Déficits presupuestarios estatales y los casi $1.000 millones en recortes previstos en Medicaid, derivados de la Gran y Hermosa Ley (One Big Beautiful Bill Act) del presidente Donald Trump, han llevado a los estados a reducir el gasto en ABA y otras áreas en crecimiento dentro del programa.

También ha influido una serie de auditorías estatales y federales que pusieron en duda los pagos realizados a algunos proveedores de ABA.

Una auditoría federal del programa Medicaid en Indiana estimó pagos indebidos de al menos $56 millones en 2019 y 2020, señalando que algunos proveedores cobraron por horas excesivas, incluso durante la hora de la siesta.

Una auditoría similar en Wisconsin calculó pagos indebidos por al menos $18,5 millones entre 2021 y 2022. En Minnesota, las autoridades estatales tenían 85 investigaciones abiertas sobre proveedores de servicios para el autismo en el verano, después de que el FBI allanara dos centros a finales del año pasado como parte de una investigación por fraude a Medicaid.

Familias presentan batalla

Pero los esfuerzos por reducir el gasto en esta terapia también han generado rechazo entre las familias que dependen del tratamiento.

En Carolina del Norte, las familias de 21 niños con autismo presentaron una demanda judicial contra el recorte del 10% en los pagos a proveedores. En Colorado, un grupo de proveedores y padres demandó al estado por su decisión de requerir autorizaciones previas y reducir los pagos por la terapia.

Y en Nebraska, familias y defensores aseguran que los recortes —que van del 28% al 79%, según el tipo de servicio— podrían poner en riesgo el acceso al tratamiento.

“Sus hijos han tenido avances muy importantes y ahora los dejan en la estacada”, dijo Cathy Martinez, presidenta de Autism Family Network, una organización sin fines de lucro con sede en Lincoln, Nebraska, que apoya a personas autistas y a sus familias.

Martinez pasó años abogando para que Nebraska exigiera cobertura para la terapia ABA, cuando su familia se tuvo que declarar en bancarrota por pagarla de su bolsillo para su hijo Jake.

Jake fue diagnosticado con autismo a los 2 años, en 2005, y comenzó a recibir ABA en 2006. Martinez atribuye a esta terapia el que Jake haya aprendido a leer, escribir, usar un dispositivo de comunicación asistida e ir al baño solo.

Para pagar el tratamiento, que costaba $60.000 al año, la familia pidió dinero prestado a un familiar, hipotecó su casa por segunda vez y terminó en bancarrota.

“Me dio muchísima rabia que mi familia tuviera que declararse en bancarrota para poder darle a nuestro hijo algo que recomendaron todos los doctores que lo vieron”, dijo Martinez. “Ninguna familia debería tener que elegir entre la bancarrota y ayudar a su hijo”.

Nebraska ordenó la cobertura de servicios para el autismo en 2014. Ahora, Martinez teme que los recortes lleven a los proveedores a dejar de ofrecer el servicio, limitando el acceso por el que tanto luchó.

Sus temores parecieron confirmarse a fines de septiembre, cuando Above and Beyond Therapy, uno de los mayores proveedores de ABA en Nebraska, notificó a las familias que dejaría de participar en el programa Medicaid del estado, debido a los recortes.

El sitio web de Above and Beyond ofrece servicios en al menos ocho estados. Según una auditoría estatal, la empresa recibió más de $28.5 millones del programa Medicaid con administración privada de Nebraska en 2024. Eso representa aproximadamente un tercio del gasto total en ABA en el estado ese año, y cuatro veces más que el segundo proveedor más grande. Su director general, Matt Rokowsky, no respondió a las solicitudes de entrevista.

Una semana después de anunciar su retiro, la empresa cambió de opinión y decidió continuar ofreciendo servicios bajo Medicaid, citando “una enorme cantidad de llamadas, correos electrónicos y mensajes emotivos” en una carta enviada a las familias.

Danielle Westman, madre de Caleb, un adolescente de 15 años paciente de Above and Beyond que recibe 10 horas semanales de ABA en casa, se sintió aliviada con el anuncio. Caleb es semiverbal y tiene tendencia a alejarse de sus cuidadores.

“No voy a ir con ninguna otra empresa”, dijo Westman. “Muchas compañías de ABA quieren que vayamos a sus centros en horario de oficina. Mi hijo tiene mucha ansiedad, ansiedad muy alta, así que estar en casa, en su espacio seguro, ha sido increíble”.

Funcionarios de Nebraska declararon que antes de los recortes, el estado tenía las tarifas de reembolso de Medicaid para ABA más altas del país y que los nuevos pagos siguen siendo competitivos en comparación con los estados vecinos, pero permitirán que el servicio “sea accesible y sostenible a futuro”.

Drew Gonshorowski, director estatal de Medicaid, dijo que su agencia sigue de cerca la situación y que no tenía conocimiento de proveedores que hubieran dejado el estado debido a los recortes. Afirmó que más proveedores han comenzado a operar en Nebraska desde que se anunciaron los cambios.

Uno incluso celebró los recortes. Corey Cohrs, CEO de Radical Minds, que tiene siete centros en el área de Omaha, criticó lo que considera una tendencia de algunos proveedores a ofrecer 40 horas de servicios por niño por semana, sin diferenciar necesidades. Lo comparó con recetar quimioterapia a todos los pacientes con cáncer, sin importar la gravedad, solo porque es el tratamiento más caro.

“Así se gana más dinero por paciente y no se toman decisiones clínicas reales para determinar el mejor camino”, expresó Cohrs.

Nebraska estableció un límite de 30 horas semanales de ABA sin revisión clínica adicional, y según Cohrs, las nuevas tarifas son viables para los proveedores, a menos que su modelo de negocios dependa exclusivamente de las altas tasas de Medicaid.

En Carolina del Norte, los servicios de ABA de Aubreigh Osborne fueron restablecidos principalmente gracias a la persistencia de su madre, quien llamó una y otra vez hasta lograr que el sistema cediera.

Y por ahora, Gaile Osborne no tendrá que preocuparse por las disputas legislativas que podrían afectar la atención de su hija. A principios de noviembre, un juez del Tribunal Superior del estado suspendió temporalmente los recortes a ABA mientras avanza la demanda presentada por las familias.

Osborne es directora ejecutiva de Foster Family Alliance, una importante organización de defensa del cuidado temporal en el estado, y fue maestra de educación especial durante casi 20 años. A pesar de su experiencia, no sabía cómo ayudar a Aubreigh a mejorar socialmente. Al principio, era escéptica sobre ABA, pero ahora ve en esta terapia un puente hacia el bienestar de su hija.

“No es perfecta”, dijo Osborne. “Pero el progreso que ha tenido en menos de un año es increíble”.

¿Tienes alguna experiencia relacionada con recortes en los servicios para personas con autismo que te gustaría compartir? Haz clic aquí para contarle tu historia a KFF Health News.

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Year after year, Mary Bucklew strategized with a nurse practitioner about losing weight. “We tried exercise,” like walking 35 minutes a day, she recalled. “And 39,000 different diets.”

But 5 pounds would come off and then invariably reappear, said Bucklew, 75, a public transit retiree in Ocean View, Delaware. Nothing seemed to make much difference — until 2023, when her body mass index slightly exceeded 40, the threshold for severe obesity.

“There’s this new drug I’d like you to try, if your insurance will pay for it,” the nurse practitioner advised. She was talking about Ozempic.

Medicare covered it for treating Type 2 diabetes but not for weight loss, and it cost more than $1,000 a month out-of-pocket. But to Bucklew’s surprise, her Medicare Advantage plan covered it even though she wasn’t diabetic, charging just a $25 monthly copay.

Pizza, pasta, and red wine suddenly became unappealing. The drug “changed what I wanted to eat,” she said. As 25 pounds slid away over six months, she felt less tired and found herself walking and biking more.

Then her Medicare plan notified her that it would no longer cover the drug. Calls and letters from her health care team, arguing that Ozempic was necessary for her health, had no effect.

With coverage denied, Bucklew became part of an unsettlingly large group: older adults who begin taking GLP-1s and related drugs — highly effective for diabetes, obesity, and several other serious health problems — and then stop taking them within months.

That usually means regaining weight and losing the associated health benefits, including lower blood pressure, cholesterol, and A1c, a measure of blood sugar levels over time.

Widely portrayed as wonder drugs, semaglutide (Ozempic, Wegovy, Rybelsus), tirzepatide (Zepbound, Mounjaro), and related medications have transformed the treatment of diabetes and obesity.

The FDA has approved several GLP-1s for additional uses, too — including to treat kidney disease and sleep apnea, and prevent heart attacks and strokes.

“They’re being studied for every purpose you can conceive of,” said Timothy Anderson, a health services researcher at the University of Pittsburgh and author of a recent JAMA Internal Medicine editorial about anti-obesity medications.

(Drug trials have found no impact on dementia, however.)

People 65 and older represent prime targets for such medications. “The prevalence of obesity hovers around 40%” in older adults, as measured by body mass index, said John Batsis, a geriatrician and obesity specialist at the University of North Carolina School of Medicine.

The proportion of people with Type 2 diabetes rises with age, too, to nearly 30% at age 65 and older. Yet a recent JAMA Cardiology study found that among Americans 65 and up with diabetes, about 60% discontinued semaglutide within a year.

Another study of 125,474 people with obesity or who are overweight found that almost 47% of those with Type 2 diabetes and nearly 65% of those without diabetes stopped taking GLP-1s within a year — a high rate, said Ezekiel Emanuel, a health services researcher at the University of Pennsylvania and senior author of the study.

Patients 65 and older were 20% to 30% more likely than younger ones to discontinue the drugs and less likely to return to them.

What explains this pattern? As many as 20% of patients may experience gastrointestinal problems. “Nausea, sometimes vomiting, bloating, diarrhea,” Anderson said, ticking off the most common side effects.

Linda Burghardt, a researcher in Great Neck, New York, started taking Wegovy because her doctor thought it might reduce arthritis pain in her knees and hips. “It was an experiment,” said Burghardt, 79, who couldn’t walk far and had stopped playing pickleball.

Within a month, she suffered several bouts of stomach upset that “went on for hours,” she said. “I was crying on the bathroom floor.” She stopped the drug.

Some patients find that medication-induced weight loss lessens rather than improves fitness, because another side effect is muscle loss. Several trials have reported that 35% to 45% of GLP-1 weight loss is not fat, but “lean mass” including muscle and bone.

Bill Colbert’s cherished hobby for 50 years, reenacting medieval combat, involves “putting on 90 pounds of steel-plate armor and fighting with broadswords.” A retired computer systems analyst in Churchill, Pennsylvania, he started on Mounjaro, successfully lowered his blood glucose, and lost 18 pounds in two months.

But “you could almost see the muscles melting away,” he recalled. Feeling too weak to fight well at age 78, he also discontinued the drug and now relies on other diabetes medications.

“During the aging process, we begin to lose muscle,” typically half a percent to 1% of muscle weight per year, said Zhenqi Liu, an endocrinologist at the University of Virginia who studies the effects of weight loss drugs. “For people on these medications, the process is much more accelerated.”

Losing muscle can lead to frailty, falls, and fractures, so doctors advise GLP-1 users to exercise, including strength training, and to eat enough protein.

The high rate of GLP-1 discontinuation may also reflect shortages; from 2022 to 2024, these drugs temporarily became hard to find. Further, patients may not grasp that they will most likely need the medications indefinitely, even after they meet their blood glucose or weight goals.

Re-initiating treatment involves its own hazards, Batsis cautioned. “If weight goes up and down, up and down, metabolically it sets people up for functional decline down the road.”

Of course, in considering why patients discontinue, “a large part of it is money,” Emanuel said. “Expensive drugs, not necessarily covered” by insurers. Indeed, in a Cleveland Clinic study of patients who discontinued semaglutide or tirzepatide, nearly half cited cost or insurance issues as the reason.

Some moderation in price has already occurred. The Biden administration capped out-of-pocket payments for all prescriptions that a Medicare beneficiary receives ($2,100 is the 2026 limit), and authorized annual price negotiations with manufacturers.

The reductions include Ozempic, Wegovy, and Rybelsus, though not until 2027. Medicare Part D drug plans will then pay $274, and since most beneficiaries pay 25% in coinsurance, their out-of-pocket monthly cost will sink to $68.50.

Perhaps even lower, if agreements announced in November between the Trump administration and drugmakers Eli Lilly and Novo Nordisk pan out.

The bigger question is whether Medicare will amend its original 2003 regulations, which prohibit Part D coverage for weight loss drugs. “An archaic policy,” said Stacie Dusetzina, a health policy researcher at the Vanderbilt University School of Medicine.

The Trump administration’s November announcement would expand Medicare eligibility for GLP-1s and related medications to include obesity, perhaps as early as spring. But key details remain unclear, Dusetzina said.

Medicare should cover anti-obesity drugs, many doctors argue. Americans still tend to think that “diabetes is a disease and obesity is a personal problem,” Emanuel said. “Wrong. Obesity is a disease, and it reduces life span and compromises health.”

But given the expense to insurers, Dusetzina warned, “if you expand the indications and extent of coverage, you’ll see premiums go up.”

For older patients, often underrepresented in clinical trials, questions about GLP-1s remain. Might a lower maintenance dose stabilize their weight? Can doses be spaced out? Could nutritional counseling and physical therapy offset muscle loss?

Bucklew, whose coverage was denied, would still like to resume Ozempic. But because of a recent sleep apnea diagnosis, she now qualifies for Zepbound with a $50 monthly copay.

She has seen no weight loss after three months. But as the dose increases, she said, “I’ll stay the course and give it a shot.”

The New Old Age is produced through a partnership with The New York Times.

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When Matthew Hurley was looking to take PrEP to prevent HIV, the doctor hadn’t heard of the medicine, and when he finally did prescribe PrEP, the bills sent to Hurley were expensive … and wrong. “I decided to write in because the process was really super frustrating.” At one point, Hurley asked, “Am I just going to stop this medication to stop having to deal with these coding issues and these scary bills?”

— Matthew Hurley, 30, from Berkeley, California

A couple of years ago, Matthew Hurley got the kind of text people fear.

It said: “When was the last time you were STD tested?”

Someone Hurley had recently had unprotected sex with had just tested positive for HIV.

Hurley went to a clinic and got tested. “Luckily, I had not caught HIV, but it was a wake-up call,” they said.

That experience moved Hurley to seek out PrEP, shorthand for preexposure prophylaxis. The antiretroviral medication greatly reduces the chance of getting HIV, the virus that causes AIDS. The therapy is 99% effective at protecting people against sexual transmission when taken as prescribed.

Hurley started PrEP and all was well for the first nine months — until their health insurance changed and they started seeing a new doctor: “When I brought PrEP up to him, he said, ‘What’s that?’ And I was like, oh boy.”

Hurley, who is a librarian, went into teaching mode. They explained that the PrEP regimen they’d been on required daily pills and lab work every three months to look out for breakthrough infections or other health issues.

Hurley was surprised they knew more about PrEP than the physician. The FDA approved the first drug, Truvada, back in 2012, and Hurley lives in the San Francisco Bay Area, a place with one of the highest concentrations of LGBTQ+ people in the nation and a deep history of HIV and health care activism. Hurley said older friends and acquaintances who survived the AIDS epidemic shared the horror of living through a time when there was no effective treatment or drugs for prevention. Deciding to take PrEP felt like an empowering way to protect their health and their community.

So Hurley pushed the doctor, and after the physician did his own research, he agreed to prescribe PrEP.

Hurley got the care they needed, but they had to be the expert in the exam room.

“That’s a big burden,” said Beth Oller, a family medicine physician and board member of GLMA, a national organization of LGBTQ+ and allied health care professionals focused on health equity. “You really want someone you can just go in and talk [to] about your health concerns without feeling like you are having to educate and advocate for yourself at every turn.”

Oller said many queer people have had negative experiences during health care visits.

“I have a lot of patients who had not done preventive care for years because of the medical stigma,” she said.

Billing Headaches

Clearing the access hurdles to HIV prevention medicine was just the beginning. Hurley started receiving a string of bills for PrEP-related care. Blood test: $271.80. Office visit: $263.

Again, Hurley was surprised. They knew — even if the billing office didn’t — that under the Affordable Care Act most private insurance plans and Medicaid expansion programs are required to cover PrEP and ancillary services, like lab tests, as preventive with no cost sharing.

The bills for doctor visits and blood draws piled up.

Hurley would appeal the bill and get a denial almost every time. Then, they would appeal again.

Hurley shared a series of appeal letters for one service, in which the billing office acknowledged that blood work had been initially incorrectly coded as diagnostic. Once that was corrected, Hurley said, the insurer paid for the service.

That might sound quick or easy to resolve, but Hurley said it took “forever to get through the process.” They dealt with at least six incorrect bills over several months. Hurley estimated they spent more than 60 hours contesting the bills.

During that time, Hurley said, the billing department “is continuing to send me emails and bills that are saying, You’re overdue. You’re overdue. You’re overdue.

Fed up with the hassles, Hurley decided to find a health provider (and billing office) better informed about PrEP. They settled on the AIDS Healthcare Foundation. The care team there was able to discuss the pros and cons of different PrEP regimens and knew how to navigate the formulary for Hurley’s insurance.

Hurley hasn’t gotten an unexpected bill since.

But siloing sexual health care and PrEP off from primary care hasn’t been ideal.

“I have multiple organizations that I have to deal with to get my holistic health dealt with,” Hurley said.

A provider doesn’t need to be an HIV specialist, an infectious disease expert, or a physician to prescribe PrEP. The Centers for Disease Control and Prevention encourages primary care providers to treat PrEP like other preventive medications.

To avoid some of the headaches Hurley faced, try these tips:

1. Find Out if PrEP Is Right for You

The CDC estimates 2.2 million Americans could benefit from HIV prevention drugs, but just over a quarter of that group have been prescribed them.

“Not enough people know about PrEP, and there are a number of people who know about PrEP but do not realize it’s for them,” said Jeremiah Johnson, executive director of PrEP4All, an organization dedicated to universal access to HIV prevention and medication.

According to the CDC’s clinical guidelines, PrEP can be prescribed as part of a preventive health plan to anyone who’s sexually active. It’s especially recommended for people who don’t use condoms consistently, intravenous drug users who share needles, men who have sex with men, and people in relationships with partners living with HIV or whose HIV status is unclear.

The vast majority of PrEP users are men. There are big race, gender, and geographical disparities in the distribution of HIV and the populations taking the prevention medicine. For example, based on the patterns of new infection in the U.S., a group that would benefit from PrEP is cisgender Black women, whose gender identity aligns with their sex assigned at birth.

2. Don’t Assume Your Provider Knows About PrEP

If your doctors aren’t well informed, start by educating yourself. There are also clinical guidelines and information you can share with your provider. Check your state or local health department for a how-to guide for prescribing PrEP. For example, the New York State Department of Health AIDS Institute has information for providers.

The CDC also has PrEP guidelines, but many of the agency’s websites dealing with LGBTQ+ health are in flux. Under the Trump administration, some HIV/AIDS resources have been taken down from federal websites. Others now have headers saying: “This page does not reflect biological reality and therefore the Administration and this Department rejects it.”

3. Get Lab Work In-Network

Johnson said Hurley’s experience with billing mistakes is common. “The lab expenses in particular end up being very tricky,” Johnson said.

For example, a doctor’s office may mistakenly code the lab work required for PrEP as a diagnostic test instead of preventive care. Patients like Hurley can end up with a bill they shouldn’t have to pay. If your doctor’s office is making mistakes, share the PrEP billing and coding guide from NASTAD, an association of public health officials who administer HIV and hepatitis programs.

Try to get your lab work done in-network. If the lab is out-of-network, Johnson said, it can be difficult to appeal.

If the bills keep coming, appeal them. And if you can’t resolve the dispute, Johnson said, file a complaint with the agency that regulates your insurance plan.

4. Look for Ways To Save

There are different kinds of PrEP. There are lower-cost, generic versions of Truvada, for example, sold as emtricitabine/tenofovir disoproxil fumarate, often shortened to FTC/TDF. Newer PrEP drugs Apretude and Yeztugo have list prices in the thousands of dollars. Check your insurance formulary and ask your doctor to prescribe medicine your plan will cover.

With many health care premiums dramatically increasing and millions at risk of losing Medicaid coverage, many people may go without health insurance this year. Drug manufacturers such as Gilead and ViiV have assistance programs for qualifying patients. If you have to pay out-of-pocket, prescription price comparison websites, like GoodRx, can help you find the pharmacies with the cheapest price.

5. Consider Telehealth

Telehealth is an increasingly popular option if you don’t live near an affirming provider or are looking for a more private way to get PrEP. In 2024, roughly 1 in 5 people on PrEP used telemedicine. Online pharmacies like Mistr and Q Care Plus offer PrEP without an in-person appointment, and lab work can be done at home. Some telehealth options have ways to lower the cost if you’re uninsured.

Telehealth can also broaden the number of doctors who are ready to prescribe PrEP. And some patients say speaking with a remote provider feels like a safer setting to talk about sexual health. “They’re in the comfort of their own bedroom or living room but can interface virtually with a provider. It can open up a lot of doors for honesty and trust,” said Alex Sheldon, executive director of GLMA.

6. Seek Out Affirming Care

GLMA created the LGBTQ+ Healthcare Directory, a searchable database of health care providers across the nation who identify as queer-friendly. As Hurley discovered, living in a major metro area is no guarantee your doctor is up to date on LGBTQ+ health care.

Ask locals you trust for recommendations. You might be surprised to find good options nearby.

Health Care Helpline helps you navigate the health system hurdles between you and good care. Send us your tricky question and we may tap a policy sleuth to puzzle it out. Share your story. The crowdsourced project is a joint production of NPR and KFF Health News.

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Lenia Watson-Burton, a 37-year-old U.S. Navy administrator, expected that cosmetic surgery would get rid of stubborn fat quickly and easily — just as the web advertising promised.

Instead, she died three days after a liposuction-like procedure called AirSculpt at the San Diego office of Elite Body Sculpture, a cosmetic surgery chain with more than 30 offices across the U.S. and Canada, court records show.

Cosmetic surgery chains setting up shop in multiple states depend heavily on advertising to attract customers: television, print, social media influencers, even texts hawking discounted holiday rates. The pitches typically promise patients life-changing body shaping with minimal pain and a quick recovery.

Yet there’s no federal requirement that surgery companies post evidence supporting the truth and accuracy of these marketing claims. No agency tracks how frequently patients persuaded by sales pitches sustain painful complications such as infections, how effectively surgeons and nursing staff follow up and treat injuries, or whether companies selling new aesthetic devices and methods have adequately trained surgeons to use them safely.

In 2023, Watson-Burton’s husband and six children and stepchildren sued Elite Body Sculpture and plastic surgeon Heidi Regenass for medical malpractice, alleging that the thin cannula the surgeon used to remove fat perforated Watson-Burton’s bowel, causing her death.

The suit also accused Elite Body Sculpture of posting false or misleading advertising on its website, such as describing the clinic’s branded procedure AirSculpt as “gentle on the body” and stating: “Our patients take the fewest possible risks and get back to their regular routine as soon as 24-48 hours post-operation.”

Watson-Burton was one of three patients who died after having liposuction and fat transfer operations performed by Regenass from October 2022 to February 2023, court records state. Families of all three women sued the surgeon, who denied wrongdoing in legal filings. The parties settled the Watson-Burton family case in 2024. Two other wrongful death cases are pending, including a suit by an Ohio woman who alleges her mother relied on promises on Regenass’ website that the operation in California would be safe with a quick recovery.

Neither Regenass nor her attorneys responded to repeated requests for comment. Emails and phone calls to Elite Body Sculpture’s Miami headquarters were not returned.

State and federal authorities do have the power to prohibit false or misleading medical advertising of all types, though enforcement is spotty, particularly when promotions pop up online. That means patients must do their own homework in evaluating cosmetic surgery marketing pitches.

“While consumers should be able to trust that ad claims are substantiated because the law requires them to be, the reality is that it pays for consumers to bring a skeptical eye,” said Mary Engle, an executive vice president at BBB National Programs.

‘Up a Cup’

Founded by cosmetic surgeon Aaron Rollins, Elite Body Sculpture says in Securities and Exchange Commission filings that it offers a “premium patient experience and luxurious, spa-like atmosphere” at its growing network of centers. The publicly traded company, based in Miami Beach and backed by private equity investors, markets AirSculpt as being “much less invasive than traditional liposuction” and providing “faster healing with superior results.” The ads say that AirSculpt “requires no scalpel, or stitches, and only leaves behind a freckle-sized scar!” and that patients “remain awake the whole time and can walk right out of their procedure, enjoying dramatic results!” Some risks are disclosed.

Rollins, who recently made headlines for putting his Indian Creek mansion on the market for $200 million, did not respond to repeated requests for comment. A lawyer for Rollins, Robert Peal, responded to an email but didn’t comment. On Nov. 4, the company announced that Rollins had resigned as executive chairman of the board of directors of AirSculpt Technologies and as a member of the board.

Many AirSculpt patients opt to have fat that is removed from their stomachs or other places injected into their buttocks, often called a Brazilian butt lift. Others use the fat to enhance their breasts, a procedure the company brands as “Up a Cup.” Since March 2023, at least seven patients have filed lawsuits accusing Elite Body Sculpture of running misleading advertising or misrepresenting results, arguing, among other things, that they felt more pain or healed much more slowly than the ads led them to believe they would, court records show. One of the lawsuits has been dismissed, and the company has denied the allegations in others.

The Watson-Burton family argued in their lawsuit that some marketing claims about AirSculpt were simply not true.

For instance, Elite Body Sculpture’s website stated that AirSculpt has “automated technology” set to “turn off” before the cannula penetrates the body too deeply and possibly causes serious injury, according to the suit. That feature didn’t protect Watson-Burton, who paid $12,000 for the operation, hoping for a “quick and timely recovery” before a scheduled U.S. Navy deployment, according to the lawsuit.

Rather than being gentle on the body, AirSculpt was “extremely painful, highly invasive, unsafe, required more than a short 24-hour recovery period and could and did damage internal organs,” according to the suit.

Watson-Burton called the San Diego center on Oct. 27, 2022, a day after the operation, to report “severe pain” in her upper abdomen, but staffers took no action to evaluate her, according to the suit. The next morning, an ambulance rushed her to a hospital, where emergency surgery confirmed the gravity of her injuries. Surgeons noted her injuries included three perforations of the small bowel and sepsis.

Watson-Burton died on Oct. 29, 2022. An autopsy report cited complications of the cosmetic surgery, ruling she died after becoming “septic following intraoperative small bowel perforation.” Her death certificate lists the cause as “complications of abdominoplasty.”

In court filings, Elite Body Sculpture said Watson-Burton had “experienced an uncommon surgical complication.” The company denied that it made any “specific guarantee or representation that injury to organs could not occur.” It denied any liability or that its ads made misrepresentations.

The dispute never played out fully in court. The parties settled the case in August 2024, when Elite Body Sculpture agreed to pay Watson-Burton’s family $2 million, the maximum under its insurance policy. Regenass, the surgeon, who did not carry liability insurance, agreed to pay $100,000 more, according to the settlement agreement.

Promises Not Kept

Social media pitches and web advertising also led Tamala Smith, 55, of Toledo, Ohio, to Regenass for liposuction and a fat transfer, court records state.

Smith was dead less than two weeks later, one of two other women who died following elective operations Regenass performed from December 2022 to February 2023, court records show. The surgeon operated on the two women at Pacific Liposculpture, which runs three surgery centers in Southern California, court records state.

The families of both women are suing Regenass, a board-certified plastic surgeon, and the surgery center. In both cases, which are pending in California courts, Regenass and the surgery center have denied the allegations and filed dismissal motions that deny responsibility for the deaths.

Smith was a traveling registered nurse working the overnight shift at a hospital in Los Angeles. She chose Regenass after viewing the doctor’s Instagram page, according to a lawsuit filed by Smith’s daughter, Ste’Aira Ballard, who lives in Toledo.

The ads described the surgeon as an “awake liposuction and fat transfer specialist,” while her website assured patients they would feel minimal pain and be “back to work in 24-48 hours,” according to the suit.

During the three-hour operation on Feb. 8, 2023, at Pacific Liposculpture’s Newport Beach office, Regenass removed fat from Smith’s abdomen and flanks and redistributed it to her buttocks, according to the suit. Smith called the office at least twice in subsequent days to report pain and swelling, but a staffer told her that was normal, according to the suit. Smith never spoke to the surgeon, according to the suit.

When Ballard couldn’t reach her mother, she called the hospital only to learn Smith hadn’t turned up for her overnight shift for two days. The hospital called police and asked for a welfare check at the extended-stay hotel in Glendale, California, where Smith had been living.

An officer discovered her body on the bed “surrounded by towels and sheets that are stained with brown and green fluids,” according to a coroner’s report in the court file. A countertop in the room was “covered in medical paperwork detailing post-operative instructions from a liposuction clinic,” according to the report. Ballard said she learned of her mother’s death when she called Smith’s cellphone; a police officer answered and delivered the devastating news.

“Oh, my God, I fell to the floor,” Ballard said in an interview with KFF Health News and NBC News. Ballard said she still has not gotten over the shock and grief. “It bothers me because how does someone that dedicated their life to save other people’s lives end up deceased in a hotel, as if her life didn’t matter?” she asked.

Ballard said her mother trusted Regenass based on her web persona. She believes her mother, a registered nurse, would not have gone to the surgeon had she known someone had died after an operation Regenass performed at the Pacific Liposculpture San Diego office. Terri Bishop, 55, a truck driving instructor who lived in Temecula, California, died on Dec. 24, 2022, about three weeks after undergoing liposuction and fat transfer at Pacific Liposculpture, a company with a history of run-ins with state regulators.

Pacific Liposculpture did not respond to requests for comment. In court filings, the company has denied that the operations played a role in either patient’s death and moved to dismiss the cases. The company also argued that Ballard waited too long to file suit.

Bishop, who had a history of smoking, diabetes, and high blood pressure, died from “arteriosclerotic cardiovascular disease aggravated by viral pneumonia (Influenza A H1 2009),” according to a Riverside County medical examiner’s report made part of the court record. The family disagrees and is arguing that Bishop died from blood clots, a known complication of surgery. A trial is set for June 2026.

In Smith’s case, the Los Angeles County medical examiner ruled the nurse died of “renal failure of unknown cause.” The autopsy report noted: “This is a natural death since an injury directly from the surgery cannot be identified.”

Ballard is demanding further investigation to get to the bottom of what happened to her mother.

“I don’t think they were straightforward with the risk and complications that could occur,” Ballard said. “I think they are promising people stuff they can’t deliver.”

Ballard filed a complaint against Regenass with the California Medical Board, which the board is investigating, according to documents she provided to KFF Health News and NBC News. She believes regulators need to be more transparent about the backgrounds of surgeons who offer services to the public. She also hopes the investigation will shake loose more details of what happened to her mother.

“I just don’t understand how she came back to me in a body bag,” she said.

“I think they are promising people stuff they can’t deliver.”

Ste’Aira Ballard

‘Buyer Beware’

Concerns about sales pitches for cosmetic surgery date back decades.

Witnesses testifying at a June 1989 congressional hearing held by a subcommittee of the House Small Business Committee in Washington heard a litany of horror stories of patients maimed by surgeons with dubious training and credentials. Subcommittee Chairman Ron Wyden (D-Ore.) said patients were victimized by deceptive and false ads that promised a “quick, easy and painless way to change your life — all through the cosmetic surgery miracle.”

Calling for reform, Wyden added: “So, cosmetic surgery consumers are largely on their own. It’s back to a buyer beware market, and it smacks more of used car sales than medicine.” Wyden now represents Oregon in the U.S. Senate.

All these years later, there’s far more territory to police: an onslaught of web advertising, such as splashy “before and after” photos, online posts, and podcasts by social media influencers and others courted by surgery companies in a costly effort to attract business. Elite Body Sculpture, for instance, spent $43.9 million in “selling expenses” in 2024. That came to $3,130 per “customer acquisition,” according to the company’s SEC filings.

Under Federal Trade Commission guidelines, medical advertising must be “truthful, not deceptive, and backed up by competent and reliable scientific evidence,” according to Janice Kopec of the agency’s Bureau of Consumer Protection.

Any claims that are “suggested or reasonably implied” by ads also must be accurate. That includes the “net impression” conveyed by text and any charts, graphs, and other images, according to the FTC. The agency declined to elaborate.

Medical businesses are free to decide what documentation, if any, to share with the public. Most cosmetic surgery sites offer little or no such support for specific claims — such as recovery times or pain levels — on their websites.

“There is no requirement that the substantiation be made available to consumers, either on a website or upon demand,” Engle, who is also a former FTC official, said in an email.

The law permits “puffery,” or boastful statements that no person would likely take at face value, or that can’t be proved, such as, “‘You’ve tried all the rest, now try the best,’” Engle said.

Where to draw the line between acceptable boasts and unverified claims can be contentious.

Athēnix, a private equity-backed cosmetic surgery chain with locations in six cities, defended its use of terms such as “safer” and “better results” as puffery in response to a false advertising lawsuit filed against the company by Orange County District Attorney Todd Spitzer in California in August 2022.

Spitzer argued that Athēnix touted its “micro-body-contouring” technique as “safer” than traditional liposuction and offered “outstanding results with less pain and downtime” without backing that up, according to the suit.

“There is no study or evidence to support these statements and no scientific consensus about the use of these new techniques,” Spitzer argued.

The parties settled the case in July 2023 when Athēnix agreed to pay $25,000 without admitting wrongdoing, court records show. Before the settlement, Athēnix argued that its use of terms such as “safer” and “better results” was “subjective” and “puffery” — and not false advertising.

While there’s little indication that local or state authorities are stepping up scrutiny of cosmetic surgery advertising, federal authorities have signaled they intend to crack down on dubious advertising claims made by drug manufacturers.

In a letter sent to drug companies in September, FDA Commissioner Marty Makary wrote that “deceptive advertising is sadly the current norm” on social media platforms and that the agency would no longer tolerate these violations.

‘Bad Advice’

To prove medical negligence, injured patients generally must show that their care fell below what a “reasonably prudent” doctor with similar training would have provided. In their defense, surgeons may argue that complications are a risk of any operation and that a poor outcome doesn’t mean the doctor was negligent.

Some lawsuits filed by injured patients add allegations that advertisements by surgery chains misled them, or that surgeons failed to fully explain possible risks of injuries, a requirement known in medical circles as informed consent.

Caitlin Meehan had such a case. She underwent a $15,000 AirSculpt procedure at Elite Body Sculpture’s clinic in Wayne, Pennsylvania, outside Philadelphia. She agreed to the surgery in March 2023, she said, because the company’s website described it as “Lunch Time Lipo,” according to a lawsuit she filed in late August. The suit alleges that the doctor she discussed the procedure with “maintained that there are no serious, life-threatening, lasting and/or permanent complications,” according to the suit.

During the procedure, however, gases became trapped beneath her skin, causing a widespread swelling called subcutaneous emphysema, according to the suit. Meehan was shocked to see her face, neck, and upper body severely swollen, causing her shortness of breath.

A friend who drove her to the appointment asked the staff to call an ambulance, but staff members said that wasn’t necessary, according to the suit. After an hour’s drive home, Meehan said her skin felt like it was burning and she called 911. She spent four days in the hospital recovering and remains scarred, according to the suit. The suit is pending, and the company has yet to file an answer in court.

Scott Hollenbeck, immediate past president of the American Society of Plastic Surgeons, said recovering from liposuction in a day “seems unrealistic” given the bruising and swelling that can occur.

“The idea that you could return to work 24 hours after effective liposuction seems like extremely bad advice,” Hollenbeck said.

‘I Felt Horrible’

Ads that promised patients minimal discomfort also have come under attack in patient lawsuits.

More than 20 other medical malpractice cases reviewed by KFF Health News made similar allegations of unexpected pain during operations at cosmetic surgery chains using lidocaine for pain relief in “awake liposuction.”

One patient suing Elite Body Sculpture in Cook County, Illinois, alleged she “was crying due to [the] severe pain” of an operation in September 2023. She alleged the doctor said he couldn’t give her any more local anesthetic and pressed on with the procedure. The defendants have not filed an answer in court. The practice didn’t respond to a request for comment.

Engle, the former FTC official, said that while claims of discomfort are somewhat subjective, they still must be “truthful and substantiated,” such as supported by a “valid, reliable clinical study of patients’ experience.”

NBC News producer Jason Kane contributed to this report.

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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