The Federal Trade Commission has long argued that competition makes the economy better. But some states have stopped the agency from blocking hospital mergers that create local or regional monopolies, and the results have been messy.

Two dozen states have at some point passed controversial legislation waiving anti-monopoly laws, allowing rival hospitals to merge and replacing competition with prolonged state oversight.

Six years ago, Tennessee and Virginia ushered in the largest state-sanctioned hospital monopoly in the nation with the creation of Ballad Health. For most of the 1.1 million residents in the Tri-Cities region of northeast Tennessee and southwest Virginia, the merged system became the only option for hospital care.

The argument for Ballad was that two hospital companies couldn’t survive in the region, and a merger would prevent them from closing or being bought up. But critics say fears a monopoly would jeopardize access to and quality of care have been realized. For example, since the merger, patients spend three times as long in Ballad emergency rooms before admission to hospitals, according to reports released by the Tennessee health department.

“I do not want to further risk my life and die at a Ballad hospital,” said Neal Osborne, a city council member in Bristol, Va. In an interview, Osborne said he spent 30 hours in a Ballad ER this year as he suffered diabetic crisis. “The wait times just to get in and see a doctor in the ER have grown exponentially.”

The legislation that created Ballad is known as a certificate of public advantage, or COPA. The FTC has repeatedly warned states to be wary of COPAs, which “only exist to protect a merger that would otherwise be illegal under antitrust law,” Rahul Rao, a deputy director of the Bureau of Competition at the agency, told KFF Health News in an interview last year.

There have been about 10 hospital mergers in the past three decades that depended on COPAs, and afterward, the feds saw rising prices, decreases in quality, reductions in access and a decrease in wages, Rao said.

Since Ballad’s COPA, the merged system has not met most quality-of-care goals set by the states in recent years. It has fallen short of charity care promises made to Tennessee by about $191 million over a five-year span. 

Ballad has attributed its quality struggles to the coronavirus pandemic, its charity shortfalls to Medicaid changes and its longer ER stays to staffing and discharge challenges it says are beyond its control.

Ballad said ER times for admitted patients have dropped to about 7.5 hours since its latest annual report.  

“On those issues Ballad Health can directly control, our performance has rebounded from 2022,” said a Ballad spokesperson, Molly Luton.

The FTC announced in 2019 that it would study the Ballad merger but has yet to issue a report.

Legislation was introduced this year to limit COPAs in Tennessee. But on Tuesday, a state legislative subcommittee voted to kill the bill without debate, refusing to hear testimony from Tri-Cities residents who drove five hours to Nashville for a chance to speak against Ballad.

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When Karla Adkins looked in the rearview mirror of her car one morning nearly 10 years ago, she noticed the whites of her eyes had turned yellow.

She was 36 at the time and working as a physician liaison for a hospital system on the South Carolina coast, where she helped build relationships among doctors. Privately, she had struggled with heavy drinking since her early 20s, long believing that alcohol helped calm her anxieties. She understood that the yellowing of her eyes was evidence of jaundice. Even so, the prospect of being diagnosed with alcohol-related liver disease wasn’t her first concern.

“Honestly, the No. 1 fear for me was someone telling me I could never drink again,” said Adkins, who lives in Pawleys Island, a coastal town about 30 miles south of Myrtle Beach.

But the drinking had caught up with her: Within 48 hours of that moment in front of the rearview mirror, she was hospitalized, facing liver failure. “It was super fast,” Adkins said.

Historically, alcohol use disorder has disproportionately affected men. But recent data from the Centers for Disease Control and Prevention on deaths from excessive drinking shows that rates among women are climbing faster than they are among men. The Biden administration considers this trend alarming, with one new estimate predicting women will account for close to half of alcohol-associated liver disease costs in the U.S. by 2040, a $66 billion total price tag.

It’s a high-priority topic for the Department of Health and Human Services and the Department of Agriculture, which together will release updated national dietary guidelines next year. But with marketing for alcoholic beverages increasingly geared toward women, and social drinking already a huge part of American culture, change isn’t something everyone may be ready to raise a glass to.

“This is a touchy topic,” said Rachel Sayko Adams, a research associate professor at the Boston University School of Public Health. “There is no safe level of alcohol use,” she said. “That’s, like, new information that people didn’t want to know.”

Over the past 50 years, women have increasingly entered the workforce and delayed motherhood, which likely has contributed to the problem as women historically drank less when they became mothers.

“Parenthood tended to be this protective factor,” but that’s not always the case anymore, said Adams, who studies addiction.

More than 600,000 people in the U.S. died from causes related to alcohol from 1999 to 2020, according to research published in JAMA Network Open last year, positioning alcohol among the leading causes of preventable death in this country behind tobacco, poor diet and physical inactivity, and illegal drugs.

The World Health Organization and various studies have found that no amount of alcohol is safe for human health. Even light drinking has been linked to health concerns, like hypertension and coronary artery disease and an increased risk of breast and other cancers.

More recently, the covid-19 pandemic “significantly exacerbated” binge-drinking, said George Koob, director of the National Institute on Alcohol Abuse and Alcoholism at the National Institutes of Health, as people used alcohol to cope with stress. That is particularly true of women, who are more likely to drink alcohol because of stress than men, he said.

But women are also frequently the focus of gender-targeted advertising for alcoholic beverages. The growth of rosé sales and low-calorie wines, for example, has exploded in recent years. New research published by the International Journal of Drug Policy in February found that the “pinking of products is a tactic commonly used by the alcohol industry to target the female market.”

Also at play is the emergence of a phenomenon largely perpetuated by women on social media that makes light of drinking to deal with the difficulties of motherhood. The misperception of “mommy wine culture,” said Adams, is that “if you can drink in a normal way, a moderate way, if you can handle your alcohol, you’re fine.”

And while it’s unclear to what extent memes and online videos influence women’s drinking habits, the topic merits further study, said Adams, who with colleagues last year found that women without children at age 35 are still at the highest risk for binge-drinking and alcohol use disorder symptoms among all age groups of women. But over the past two decades, the research concluded, the risk is escalating for both childless women and mothers.

These factors at play, coupled with the pressure to fit in, can make excessive drinking a difficult conversation to broach.“It’s a very taboo topic,” Adams said.

And when it does come up, said Stephanie Garbarino, a transplant hepatologist at Duke Health, it’s often surprising how many patients are unaware how their drinking affects their health.

“Often, they didn’t know there was anything wrong with what they’re doing,” she said. She is more frequently seeing younger patients with liver disease, including men and women in their 20s and 30s.

And public health and addiction experts fear that alcohol-related liver disease among women will become a costly issue for the nation to address. Women accounted for 29% of all costs associated with the disease in the U.S. in 2022 and are expected to account for 43% by 2040, estimated a new analysis published in the American Journal of Gastroenterology in February.

National dietary guidelines advise women to drink no more than one alcoholic drink a day. Those guidelines are up for a five-year review next year by the USDA and HHS, which has called a special committee to examine, among other questions, the relationship between alcohol consumption and cancer risks. The report will be made public in 2025.

When Canada published guidance in 2023 advising that drinking any more than two alcoholic beverages a week carried health risks, Koob sparked backlash when his comments to the Daily Mail suggested that U.S. guidelines might move in the same direction. The CDC report published in February suggested that an increase in alcohol taxes could help reduce excessive alcohol use and deaths. Koob’s office would not comment on such policies.

It’s a topic close to Adkins’ heart. She now works as a coach to help others — mostly women — stop drinking, and said the pandemic prompted her to publish a book about her near-death experience from liver failure. And while Adkins lives with cirrhosis, this September will mark 10 years since her last drink.

“The amazing thing is, you can’t get much worse from where I got,” said Adkins. “My hope is really to change the narrative.”

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When she was in ninth grade, Fiona Lu fell into a depression. She had trouble adjusting to her new high school in Orange County, California, and felt so isolated and exhausted that she cried every morning.

Lu wanted to get help, but her Medi-Cal plan wouldn’t cover therapy unless she had permission from a parent or guardian.

Her mother — a single parent and an immigrant from China — worked long hours to provide for Fiona, her brother, and her grandmother. Finding time to explain to her mom what therapy was, and why she needed it, felt like too much of an obstacle.

“I wouldn’t want her to have to sign all these forms and go to therapy with me,” said Lu, now 18 and a freshman at UCLA. “There’s a lot of rhetoric in immigrant cultures that having mental health concerns and getting treatment for that is a Western phenomenon.”

By her senior year of high school, Lu turned that experience into activism. She campaigned to change state policy to allow children 12 and older living in low-income households to get mental health counseling without their parents’ consent.

In October of last year, Gov. Gavin Newsom signed a new law expanding access to young patients covered by Medicaid, which is called Medi-Cal in California.

Teenagers with commercial insurance have had this privilege in the state for more than a decade. Yet parents of children who already had the ability to access care on their own were among the most vocal in opposing the expansion of that coverage by Medi-Cal.

Many parents seized on the bill to air grievances about how much control they believe the state has over their children, especially around gender identity and care.

One mother appeared on Fox News last spring calling school therapists “indoctrinators” and saying the bill allowed them to fill children’s heads with ideas about “transgenderism” without their parents knowing.

Those arguments were then repeated on social media and at protests held across California and in other parts of the country in late October.

At the California Capitol, several Republican lawmakers voted against the bill, AB 665. One of them was Assembly member James Gallagher of Sutter County.

“If my child is dealing with a mental health crisis, I want to know about it,” Gallagher said while discussing the bill on the Assembly floor last spring. “This misguided, and I think wrongful, trend in our policy now that is continuing to exclude parents from that equation and say they don’t need to be informed is wrong.”

State lawmaker salaries are too high for them or their families to qualify for Medi-Cal. Instead, they are offered a choice of 15 commercial health insurance plans, meaning children like Gallagher’s already have the privileges that he objected to in his speech.

To Lu, this was frustrating and hypocritical. She said she felt that the opponents lining up against AB 665 at legislative hearings were mostly middle-class parents trying to hijack the narrative.

“It’s inauthentic that they were advocating against a policy that won’t directly affect them,” Lu said. “They don’t realize that this is a policy that will affect hundreds of thousands of other families.”

Sponsors of AB 665 presented the bill as a commonsense update to an existing law. In 2010, California lawmakers had made it easier for young people to access outpatient mental health treatment and emergency shelters without their parents’ consent by removing a requirement that they be in immediate crisis.

But at the last minute, lawmakers in 2010 removed the expansion of coverage for teenagers by Medi-Cal for cost reasons. More than a decade later, AB 665 is meant to close the disparity between public and private insurance and level the playing field.

“This is about equity,” said Assembly member Wendy Carrillo, a Los Angeles Democrat and the bill’s author.

The original law, which regulated private insurance plans, passed with bipartisan support and had little meaningful opposition in the legislature, she said. The law was signed by a Republican governor, Arnold Schwarzenegger.

“Since then, the extremes on both sides have gotten so extreme that we have a hard time actually talking about the need for mental health,” she said.

After Carrillo introduced the bill last year, her office faced death threats. She said the goal of the law is not to divide families but to encourage communication between parents and children through counseling.

More than 20 other states allow young people to consent to outpatient mental health treatment without their parents’ permission, including Colorado, Ohio, Tennessee, and Alabama, according to a 2015 paper by researchers at Rowan University.

To opponents of the new law, like Erin Friday, a San Francisco Bay Area attorney, AB 665 is part of a broader campaign to take parents’ rights away in California, something she opposes regardless of what kind of health insurance children have.

Friday is a self-described lifelong Democrat. But then she discovered her teenager had come out as transgender at school and for months had been referred to by a different name and different pronouns by teachers, without Friday’s knowledge. She devoted herself to fighting bills that she saw as promoting “transgender ideology.” She said she plans to sue to try to overturn the new California law before it takes effect this summer.

“We’re giving children autonomy they should never have,” Friday said.

Under the new law, young people will be able to talk to a therapist about gender identity without their parents’ consent. But they cannot get residential treatment, medication, or gender-affirming surgery without their parents’ OK, as some opponents have suggested.

Nor can minors run away from home or emancipate themselves under the law, as opponents have also suggested.

“This law is not about inpatient psychiatric facilities. This law is not about changing child custody laws,” said Rachel Velcoff Hults, an attorney and the director of health of the National Center for Youth Law, which supported AB 665.

“This law is about ensuring when a young person needs counseling or needs a temporary roof over their head to ensure their own safety and well-being, that we want to make sure they have a way to access it,” she said.

Removing the parental consent requirement could also expand the number of mental health clinicians in California willing to treat young people on Medi-Cal. Without parental consent, under the old rules, clinicians could not be paid by Medi-Cal for the counseling they provided, either in a private practice or a school counselor’s office.

Esther Lau struggled with mental health as a high school student in Fremont. Unlike Lu, she had her parents’ support, but she couldn’t find a therapist who accepted Medi-Cal. As the only native English speaker in her family, she had to navigate the health care bureaucracy on her own.

For her, AB 665 will give clinicians incentive to accept more young people from low-income households into their practices.

“For the opposition, it’s just about political tactics and furthering their agenda,” Lau said. “The bill was designed to expand access to Medi-Cal youth, period.”

This article is from a partnership that includes KQED, NPR, and KFF Health News.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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ONC seeks public comment by May 28, 2024

Emergency room doctors say insurers are increasingly declining to cover costly air-ambulance rides for critically ill patients, claiming they aren’t medically necessary. And the National Association of EMS Physicians says the No Surprises Act, enacted in 2022, is partly to blame.

The law protects patients from many out-of-network medical bills by requiring insurers and providers to haggle over fair payment. But insurers can sidestep the law if they determine care is “not medically necessary” — and insurers themselves get to decide what that means.

In the fall of 2022, Sara England of Salinas, Calif., learned about this firsthand when ER doctors at a hospital in her town had her 3-month-old, Amari, transferred by air to the University of California at San Francisco Medical Center for what turned out to be an RSV infection. Her insurer, Cigna, determined the baby’s plane ride wasn’t necessary because his medical records didn’t show a ground ambulance would “impede timely and appropriate medical care.”

(Ground ambulances are exempt from the No Surprises Act.)

England is on the hook for the full cost of the air-ambulance ride: more than $97,000. “I thought there must have been a mistake,” England said. “There’s no way we can pay this. Is this a real thing?”

Cigna spokesperson Justine Sessions called the bill “egregious” and said, “We are working diligently to try to resolve this for the family.”

The emergency physician association said it frequently encounters denials like England’s. The group wrote to Health and Human Services Secretary Xavier Becerra, acting labor secretary Julie Su and Treasury Secretary Janet L. Yellen in February urging the federal government to require insurers to presume medical necessity for air-ambulance use, subject to retrospective review.

“Clinical determinations made by a referring physician (or another qualified medical professional) should not be second-guessed by a plan,” read the letter from José Cabañas, the group’s president. The Association of Critical Care Transport has made a similar request.

HHS spokesperson Sara Lonardo said the agency is committed to strengthening protections in the No Surprises Act.

Insurers point the finger at air-ambulance providers. Robert Traynham, a spokesperson for industry group AHIP, said providers often don’t submit medical records, impeding a full evaluation. He said AHIP also suspects that air-ambulance companies sometimes favor more distant hospitals that contract with them over closer facilities.

The air-ambulance industry — much of it controlled by private equity firms — is known for fast-growing prices, limited in-network contracting and surprise out-of-network bills averaging nearly $20,000. And the Centers for Medicare and Medicaid Services data shows that when insurers and providers go head-to-head in No Surprises arbitration, 8 in 10 cases are settled in the provider’s favor, incentivizing them to raise prices higher.

Lack of medical necessity is cited in the bulk of air-ambulance claims denials, said Loren Adler, who studies the industry for the Brookings Institution.

More than a year later, England is still fighting her bill. “I don’t know what else to do other than to be a squeaky wheel and make as much noise about it as possible, because it’s not right,” she said.

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Final rule will make it easier for millions to enroll and keep their health coverage.

Christian Espinoza, director de operaciones de una red de clínicas de tratamiento del sur de California, comenzó recientemente a emplear un nuevo asistente poderoso: un algoritmo de inteligencia artificial (IA) que puede realizar exámenes de la vista con imágenes tomadas por una cámara retinal.

Realiza diagnósticos rápidos, sin la presencia de un médico.

Sus clínicas, Tarzana Treatment Centers, son de las primeras en adoptar un sistema de IA que promete expandir drásticamente la detección de retinopatía diabética, la principal causa de ceguera entre adultos en edad laboral y una amenaza para muchos de los cerca de 38 millones de estadounidenses con diabetes.

“Ha sido una bendición para nosotros”, dijo Espinoza, citando los beneficios de un examen rápido y fácil que puede realizarse con poco entrenamiento y que brinda resultados inmediatos.

Y a sus pacientes también les gusta. Joseph Smith, quien tiene diabetes tipo 2, recordó la engorrosa tarea de tomar el autobús hasta el oftalmólogo, dilatar sus pupilas, y luego esperar una semana por los resultados. “Era horrible”, dijo. “Ahora, toma solo unos minutos”.

En medio de todo el revuelo en torno a la inteligencia artificial en la atención médica, la tecnología de exámenes de la vista está surgiendo como uno de los primeros casos de uso probados de diagnósticos basados en IA en un entorno clínico.

Si bien la Administración de Drogas y Alimentos (FDA) ha aprobado cientos de dispositivos médicos basados en la IA, la adopción ha sido lenta mientras los proveedores navegan por el proceso regulatorio, la cobertura del seguro, los obstáculos técnicos, las preocupaciones sobre la equidad y los desafíos de integrarlos en los sistemas de proveedores.

Los exámenes de la vista muestran que la capacidad de la IA para proporcionar resultados inmediatos, así como el ahorro de costos y la conveniencia de no necesitar hacer una cita adicional, pueden tener grandes beneficios tanto para los pacientes como para los proveedores.

De unos 700 exámenes de la vista realizados durante el último año en las clínicas de Espinoza, casi una cuarta parte detectaron retinopatía, y los pacientes fueron remitidos a un especialista para recibir atención adicional.

La retinopatía diabética se produce cuando el alto nivel de azúcar en la sangre daña los vasos sanguíneos en la retina. Si bien el control de la diabetes de un paciente a menudo puede prevenir esta afección, y existen tratamientos para etapas más avanzadas, los médicos dicen que las evaluaciones regulares son cruciales para detectar los síntomas temprano.

Las tres compañías con exámenes de la vista con IA aprobados por la FDA para retinopatía diabética —Digital Diagnostics, con sede en Coralville, Iowa; Eyenuk, de Woodland Hills, California; y la empresa de software israelí AEYE Health— han vendido sistemas a cientos de consultorios en todo el país.

Unas pocas docenas de compañías han realizado investigaciones en este campo específico, y algunas han obtenido autorización regulatoria en otros países, incluyendo gigantes tecnológicos como Google.

Digital Diagnostics, antes Idx, recibió la aprobación de la FDA para su sistema en 2018, después de décadas de investigación y un ensayo clínico que involucró a 900 pacientes diagnosticados con diabetes. Fue el primer sistema de IA totalmente autónomo en cualquier campo médico, lo que hizo que su aprobación fuera “un momento histórico en la historia de la medicina”, dijo Aaron Lee, especialista en retina y profesor asociado de la Universidad de Washington.

Al sistema, utilizado por Tarzana Treatment Centers, puede operarlo alguien con un diploma de escuela secundaria y unas horas de entrenamiento, y solo lleva unos minutos generar un diagnóstico, sin dilatación de los ojos la mayoría de las veces, dijo John Bertrand, CEO de Digital Diagnostics. Se puede instalar en cualquier habitación poco iluminada, y los pacientes apoyan su barbilla en un soporte, y miran fijo a la cámara mientras un técnico toma imágenes de cada ojo.

La Asociación Americana de Diabetes (ADA) recomienda que las personas con diabetes tipo 2 se hagan exámenes de la vista cada uno o dos años; sin embargo, solo alrededor del 60% de las personas con diabetes se los realizan cada año, dijo Robert Gabbay, director científico y médico de la ADA.

Las tasas pueden ser tan bajas como el 35% para los menores de 21 años con diabetes. En grandes áreas del país, la escasez de optometristas y oftalmólogos puede dificultar la programación de citas, por las que a veces hay que esperar meses. Además, las barreras de viajar a una cita adicional para dilatar los ojos —lo que significa tomar tiempo libre del trabajo o la escuela, y tener transporte— pueden ser particularmente difíciles para pacientes de bajos ingresos, quienes también tienen un mayor riesgo de diabetes tipo 2.

“El 90% de nuestros pacientes son trabajadores manuales y de fábricas”, dijo Espinoza sobre sus clínicas del sur de California, que atienden principalmente a poblaciones minoritarias. “Si no trabajan, no comen”.

Un posible inconveniente de no tener un médico que realice el examen es que el algoritmo solo busca retinopatía diabética, por lo que podría pasar por alto otras enfermedades de cuidado, como el melanoma coroideo, dijo Lee. También los algoritmos generalmente “pecan de precavidos” y mandan demasiado a los pacientes a ver a especialistas.

Pero esta tecnología ha mostrado un gran beneficio: es tres veces más probable que el paciente haga un seguimiento después de un resultado positivo con el sistema de IA, según un estudio reciente realizado por Universidad de Stanford.

Eso se debe a la “proximidad del mensaje”, dijo David Myung, profesor asociado de Oftalmología en el Instituto de Ojos Byers en Stanford. Cuando el resultado se entrega de inmediato, en lugar de en semanas o incluso meses, es mucho más probable que el paciente tome acciones.

Myung lanzó el programa de teleoftalmología automatizado de Stanford en 2020, enfocándose originalmente en telemedicina y luego cambiando a IA en sus clínicas del área de la Bahía.

Ese mismo año, el National Committee for Quality Assurance amplió su estándar  de detección de retinopatía diabética para incluir los sistemas de IA. Myung dijo que llevó alrededor de un año filtrar los sistemas de ciberseguridad y TI del sistema de salud de Stanford para integrar la nueva tecnología.

También se aprendió a tomar fotos de calidad que la IA pueda descifrar, dijo Myung. “Incluso alcanzando nuestro ritmo, siempre hay algo que mejorar”, agregó.

La prueba de IA ha sido reforzada por un código de reembolso de los Centros de Servicios de Medicare y Medicaid (CMS), que puede ser difícil y llevar mucho tiempo obtener para dispositivos innovadores. Pero los proveedores de atención médica necesitan esa aprobación gubernamental para obtener reembolsos.

En 2021, los CMS establecieron la tasa de pago nacional para exámenes de retinopatía diabética con IA en $45.36: bastante por debajo de la tasa promedio  negociada de manera privada, que es de $127.81, según un estudio reciente del New England Journal of Medicine sobre IA.

Cada empresa tiene un modelo de negocio ligeramente diferente, pero en general cobran a los proveedores tarifas de suscripción o licencia por su software. Las compañías no quisieron compartir cuánto cobran por el programa.

Las cámaras pueden costar hasta $20,000 y se compran por separado o se alquilan como parte de la suscripción del software.

El mayor cumplimiento de las recomendaciones, junto con las referencias a especialistas, hace que valga la pena, dijo Lindsie Buchholz, líder de informática clínica de Nebraska Medicine, que a mediados de diciembre comenzó a usar el sistema de Eyenuk. “De alguna manera, ayuda a que la cámara se pague por sí sola”, dijo.

Hoy en día, el sistema de Digital Diagnostics se encuentra en alrededor de 600 sitios en todo el país, según la compañía. AEYE Health dijo que a su examen de la vista lo utilizan cientos de proveedores en el país. Eyenuk se negó a compartir detalles sobre su alcance.

La tecnología continúa avanzando, con estudios clínicos para cámaras adicionales —incluyendo un dispositivo portátil que puede examinar a los pacientes fuera de las clínicas— y diagnosticar otras enfermedades oculares, como el glaucoma.

Estas innovaciones ponen a la oftalmología, junto con la radiología, la cardiología y la dermatología, como especialidades en las que la innovación en IA está ocurriendo rápidamente.

“En un futuro cercano va a haber cámaras que se pueden usar en la medicina de calle, y van a ayudar a mucha gente”, dijo Espinoza.

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Susanne Gilliam, 67, was walking down her driveway to get the mail in January when she slipped and fell on a patch of black ice.

Pain shot through her left knee and ankle. After summoning her husband on her phone, with difficulty she made it back to the house.

And then began the run-around that so many people face when they interact with America’s uncoordinated health care system.

Gilliam’s orthopedic surgeon, who managed previous difficulties with her left knee, saw her that afternoon but told her “I don’t do ankles.”

He referred her to an ankle specialist who ordered a new set of X-rays and an MRI. For convenience’s sake, Gilliam asked to get the scans at a hospital near her home in Sudbury, Massachusetts. But the hospital didn’t have the doctor’s order when she called for an appointment. It came through only after several more calls.

Coordinating the care she needs to recover, including physical therapy, became a part-time job for Gilliam. (Therapists work on only one body part per session, so she has needed separate visits for her knee and for her ankle several times a week.)

“The burden of arranging everything I need — it’s huge,” Gilliam told me. “It leaves you with such a sense of mental and physical exhaustion.”

The toll the American health care system extracts is, in some respects, the price of extraordinary progress in medicine. But it’s also evidence of the poor fit between older adults’ capacities and the health care system’s demands.

“The good news is we know so much more and can do so much more for people with various conditions,” said Thomas H. Lee, chief medical officer at Press Ganey, a consulting firm that tracks patients’ experiences with health care. “The bad news is the system has gotten overwhelmingly complex.”

That complexity is compounded by the proliferation of guidelines for separate medical conditions, financial incentives that reward more medical care, and specialization among clinicians, said Ishani Ganguli, an associate professor of medicine at Harvard Medical School.

“It’s not uncommon for older patients to have three or more heart specialists who schedule regular appointments and tests,” she said. If someone has multiple medical problems — say, heart disease, diabetes, and glaucoma — interactions with the health care system multiply.

Ganguli is the author of a new study showing that Medicare patients spend about three weeks a year having medical tests, visiting doctors, undergoing treatments or medical procedures, seeking care in emergency rooms, or spending time in the hospital or rehabilitation facilities. (The data is from 2019, before the covid pandemic disrupted care patterns. If any services were received, that counted as a day of health care contact.)

That study found that slightly more than 1 in 10 seniors, including those recovering from or managing serious illnesses, spent a much larger portion of their lives getting care — at least 50 days a year.

“Some of this may be very beneficial and valuable for people, and some of it may be less essential,” Ganguli said. “We don’t talk enough about what we’re asking older adults to do and whether that’s realistic.”

Victor Montori, a professor of medicine at the Mayo Clinic in Rochester, Minnesota, has for many years raised an alarm about the “treatment burden” that patients experience. In addition to time spent receiving health care, this burden includes arranging appointments, finding transportation to medical visits, getting and taking medications, communicating with insurance companies, paying medical bills, monitoring health at home, and following recommendations such as dietary changes.

Four years ago — in a paper titled “Is My Patient Overwhelmed?” — Montori and several colleagues found that 40% of patients with chronic conditions such as asthma, diabetes, and neurological disorders “considered their treatment burden unsustainable.”

When this happens, people stop following medical advice and report having a poorer quality of life, the researchers found. Especially vulnerable are older adults with multiple medical conditions and low levels of education who are economically insecure and socially isolated.

Older patients’ difficulties are compounded by medical practices’ increased use of digital phone systems and electronic patient portals — both frustrating for many seniors to navigate — and the time pressures afflicting physicians. “It’s harder and harder for patients to gain access to clinicians who can problem-solve with them and answer questions,” Montori said.

Meanwhile, clinicians rarely ask patients about their capacity to perform the work they’re being asked to do. “We often have little sense of the complexity of our patients’ lives and even less insight into how the treatments we provide (to reach goal-directed guidelines) fit within the web of our patients’ daily experiences,” several physicians wrote in a 2022 paper on reducing treatment burden.

Consider what Jean Hartnett, 53, of Omaha, Nebraska, and her eight siblings went through after their 88-year-old mother had a stroke in February 2021 while shopping at Walmart.

At the time, the older woman was looking after Hartnett’s father, who had kidney disease and needed help with daily activities such as showering and going to the bathroom.

During the year after the stroke, both of Hartnett’s parents — fiercely independent farmers who lived in Hubbard, Nebraska — suffered setbacks, and medical crises became common. When a physician changed her mom’s or dad’s plan of care, new medications, supplies, and medical equipment had to be procured, and new rounds of occupational, physical, and speech therapy arranged.

Neither parent could be left alone if the other needed medical attention.

“It wasn’t unusual for me to be bringing one parent home from the hospital or doctor’s visit and passing the ambulance or a family member on the highway taking the other one in,” Hartnett explained. “An incredible amount of coordination needed to happen.”

Hartnett moved in with her parents during the last six weeks of her father’s life, after doctors decided he was too weak to undertake dialysis. He passed away in March 2022. Her mother died months later in July.

So, what can older adults and family caregivers do to ease the burdens of health care?

To start, be candid with your doctor if you think a treatment plan isn’t feasible and explain why you feel that way, said Elizabeth Rogers, an assistant professor of internal medicine at the University of Minnesota Medical School. 

“Be sure to discuss your health priorities and trade-offs: what you might gain and what you might lose by forgoing certain tests or treatments,” she said. Ask which interventions are most important in terms of keeping you healthy, and which might be expendable.

Doctors can adjust your treatment plan, discontinue medications that aren’t yielding significant benefits, and arrange virtual visits if you can manage the technological requirements. (Many older adults can’t.)

Ask if a social worker or a patient navigator can help you arrange multiple appointments and tests on the same day to minimize the burden of going to and from medical centers. These professionals can also help you connect with community resources, such as transportation services, that might be of help. (Most medical centers have staff of this kind, but physician practices do not.)

If you don’t understand how to do what your doctor wants you to do, ask questions: What will this involve on my part? How much time will this take? What kind of resources will I need to do this? And ask for written materials, such as self-management plans for asthma or diabetes, that can help you understand what’s expected.

“I would ask a clinician, ‘If I chose this treatment option, what does that mean not only for my cancer or heart disease, but also for the time I’ll spend getting care?’” said Ganguli of Harvard. “If they don’t have an answer, ask if they can come up with an estimate.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit kffhealthnews.org/columnists to submit your requests or tips.

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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Christian Espinoza, director of a Southern California drug-treatment provider, recently began employing a powerful new assistant: an artificial intelligence algorithm that can perform eye exams with pictures taken by a retinal camera. It makes quick diagnoses, without a doctor present.

His clinics, Tarzana Treatment Centers, are among the early adopters of an AI-based system that promises to dramatically expand screening for diabetic retinopathy, the leading cause of blindness among working-age adults and a threat to many of the estimated 38 million Americans with diabetes.

“It’s been a godsend for us,” said Espinoza, the organization’s director of clinic operations, citing the benefits of a quick and easy screening that can be administered with little training and delivers immediate results.

His patients like it, too. Joseph Smith, who has Type 2 diabetes, recalled the cumbersome task of taking the bus to an eye specialist, getting his eyes dilated, and then waiting a week for results. “It was horrible,” he said. “Now, it takes minutes.”

Amid all the buzz around artificial intelligence in health care, the eye-exam technology is emerging as one of the first proven use cases of AI-based diagnostics in a clinical setting. While the FDA has approved hundreds of AI medical devices, adoption has been slow as vendors navigate the regulatory process, insurance coverage, technical obstacles, equity concerns, and challenges of integrating them into provider systems.

The eye exams show that the AI’s ability to provide immediate results, as well as the cost savings and convenience of not needing to make an extra appointment, can have big benefits for both patients and providers. Of about 700 eye exams conducted during the past year at Espinoza’s clinics, nearly one-quarter detected retinopathy, and patients were referred to a specialist for further care.

Diabetic retinopathy results when high blood sugar harms blood vessels in the retina. While managing a patient’s diabetes can often prevent the disease — and there are treatments for more advanced stages — doctors say regular screenings are crucial for catching symptoms early. An estimated 9.6 million people in the U.S. have the disease.

The three companies with FDA-approved AI eye exams for diabetic retinopathy — Digital Diagnostics, based in Coralville, Iowa; Eyenuk of Woodland Hills, California; and Israeli software company AEYE Health — have sold systems to hundreds of practices nationwide. A few dozen companies have conducted research in the narrow field, and some have regulatory clearance in other countries, including tech giants like Google.

Digital Diagnostics, formerly Idx, received FDA approval for its system in 2018, following decades of research and a clinical trial involving 900 patients diagnosed with diabetes. It was the first fully autonomous AI system in any field of medicine, making its approval “a landmark moment in medical history,” said Aaron Lee, a retina specialist and an associate professor at the University of Washington.

The system, used by Tarzana Treatment Centers, can be operated by someone with a high school degree and a few hours of training, and it takes just a few minutes to produce a diagnosis, without any eye dilation most of the time, said John Bertrand, CEO of Digital Diagnostics.

The setup can be placed in any dimly lit room, and patients place their face on the chin and forehead rests and stare into the camera while a technician takes images of each eye.

The American Diabetes Association recommends that people with Type 2 diabetes get screened every one to two years, yet only about 60% of people living with diabetes get yearly eye exams, said Robert Gabbay, the ADA’s chief scientific and medical officer. The rates can be as low as 35% for people with diabetes age 21 or younger.

In swaths of the U.S., a shortage of optometrists and ophthalmologists can make appointments hard to schedule, sometimes booking for months out. Plus, the barriers of traveling to an additional appointment to get their eyes dilated — which means time off work or school and securing transportation — can be particularly tricky for low-income patients, who also have a higher risk of Type 2 diabetes.

“Ninety percent of our patients are blue-collar,” said Espinoza of his Southern California clinics, which largely serve minority populations. “They don’t eat if they don’t work.”

One potential downside of not having a doctor do the screening is that the algorithm solely looks for diabetic retinopathy, so it could miss other concerning diseases, like choroidal melanoma, Lee said. The algorithms also generally “err on the side of caution” and over-refer patients.

But the technology has shown another big benefit: Follow-up after a positive result is three times as likely with the AI system, according to a recent study by Stanford University.

That’s because of the “proximity of the message,” said David Myung, an associate professor of ophthalmology at the Byers Eye Institute at Stanford. When it’s delivered immediately, rather than weeks or even months later, it’s much more likely to be heard by the patient and acted upon.

Myung launched Stanford’s automated teleophthalmology program in 2020, originally focusing on telemedicine and then shifting to AI in its Bay Area clinics. That same year, the National Committee for Quality Assurance expanded its screening standard for diabetic retinopathy to include the AI systems.

Myung said it took about a year to sift through the Stanford health system’s cybersecurity and IT systems to integrate the new technology. There was also a learning curve, especially for taking quality photos that the AI can decipher, Myung said.

“Even with hitting our stride, there’s always something to improve,” he added.

The AI test has been bolstered by a reimbursement code from the Centers for Medicare & Medicaid Services, which can be difficult and time-consuming to obtain for breakthrough devices. But health care providers need that government approval to get reimbursement.

In 2021, CMS set the national payment rate for AI diabetic retinopathy screenings at $45.36 — quite a bit below the median privately negotiated rate of $127.81, according to a recent New England Journal of Medicine AI study. Each company has a slightly different business model, but they generally charge providers subscription or licensing fees for their software.

The companies declined to share what they charge for their software. The cameras can cost up to $20,000 and are either purchased separately or wrapped into the software subscription as a rental.

The greater compliance with screening recommendations that the machines make possible, along with a corresponding increase in referrals to specialists, makes it worthwhile, said Lindsie Buchholz, clinical informatics lead at Nebraska Medicine, which in mid-December began using Eyenuk’s system.

“It kind of helps the camera pay for itself,” she said.

Today, Digital Diagnostics’ system is in roughly 600 sites nationwide, according to the company. AEYE Health said its eye exam is used by “low hundreds” of U.S. providers. Eyenuk declined to share specifics about its reach.

The technology continues to advance, with clinical studies for additional cameras — including a handheld imager that can screen patients in the field — and looking at other eye diseases, like glaucoma. The innovations put ophthalmology alongside radiology, cardiology, and dermatology as specialties in which AI innovation is happening fast.

“They are going to come out in the near future — cameras that you can use in street medicine — and it’s going to help a lot of people,” said Espinoza.

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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George said the company didn’t have enough money to pay its employees. When he called state health and public assistance officials for help, he said, they told him they were swamped processing a high load of Medicaid cases, and that his residents would have to wait their turn.

“I’ve mentioned to some of them, ‘Well what do we do if we’re not being paid for four or five months? Do we have to evict the resident?’” he asked.

Instead, the company took out bank loans at 8% interest, George said.

Montana officials finished their initial checks of who qualifies for Medicaid in January, less than a year after the federal government lifted a freeze on disenrollments during the height of the covid-19 pandemic. More than 127,200 people in Montana lost Medicaid with tens of thousands of cases still processing, according to the latest state data, from mid-February.

Providers who take Medicaid have said their state payments have been disrupted, leaving them financially struggling amid the unwinding. They’re providing care without pay, and sometimes going into debt. It’s affecting small long-term care facilities, substance use disorder clinics, and federally funded health centers that rely on Medicaid to offer treatment based on need, not what people can pay.

State health officials have defended their Medicaid redetermination process and said they have worked to address public assistance backlogs.

Financial pinches were expected as people who legitimately no longer qualify were removed from coverage. But the businesses have said an overburdened state workforce is creating a different set of problems. In some cases, it has taken months for people to reapply for Medicaid after getting dropped, or to access the coverage for the first time. Part of the problem, providers said, are long waits on hold for the state’s call center and limited in-person help.

The problem is ongoing: George said two Guardian residents were booted from Medicaid in mid-March, with the state citing a lack of information as the cause.

“I have proof we submitted the needed information weeks ago,” he said.

Providers said they’ve also experienced cases of inconsistent Medicaid payments for people who haven’t lost coverage. It can be hard to disentangle why payments suddenly stop. Patients and providers are working within the same overstretched system.

Jon Forte is the head of the Yellowstone County health department in Billings, which runs health centers that provide care regardless of patients’ ability to pay. He said that at one point some of the clinics’ routine Medicaid claims went unpaid for up to six months. Their doctors are struggling to refer patients out for specialty care as some providers scale back on clientele, he said.

“Some have honestly had to stop seeing Medicaid patients so that they can meet their needs and keep the lights on,” Forte said. “It is just adding to the access crisis we have in the state.”

Payment shortfalls especially hurt clinics that base fees on patient income.

David Mark, a doctor and the CEO of One Health, which has rural clinics dotted across eastern Montana and Wyoming, said the company anticipated making about $500,000 in profit through its budget year so far. Instead, it’s $1.5 million in the red.

In Yellowstone County, Forte said, the health department, known as RiverStone Health, is down $2.2 million from its anticipated Medicaid revenue. Forte said that while state officials have nearly caught up on RiverStone Health’s direct Medicaid payments, smaller providers are still seeing delays, which contributes to problems referring patients for care.

Jon Ebelt, a spokesperson for the Montana Department of Public Health and Human Services, said Medicaid can retroactively pay for services for people who have lost coverage but are then found eligible within 90 days. He said the state’s average redetermination processing time is 34 days, the average processing time for applications is 48 days, and, when processing times are longer, it’s often due to ongoing communication with a client.

Ebelt didn’t acknowledge broader Medicaid payment delays, but instead said a provider may be submitting claims for Medicaid enrollees who aren’t eligible. He rejected the idea that individual examples of disruptions amount to a systemic problem.

“We would caution you against using broad brush strokes to paint a picture of our overall eligibility system and processes based on a handful of anecdotal stories,” Ebelt said in an emailed response to a KFF Health News query.

Ebelt didn’t directly answer questions about continued long waits for people seeking help but instead said continued coverage depends on individual beneficiaries submitting information on time.

Federal data shows Montana’s average call center wait time is 30 minutes — putting it among states with the highest average wait times. Mike White, co-owner of Caslen Living Centers, which has six small assisted living facilities across central and southwestern Montana, said some family members allowed the company to manage residents’ Medicaid accounts to help avoid missing deadlines or paperwork. Even so, he said, the company is waiting for about $30,000 in Medicaid payments, and it’s hard to reach the state when problems arise.

When they do get through to the state’s call center, the person on the other end can’t always resolve their issue or will answer questions for only one case at a time.

“You don’t know how long it’s going to take — it could be two months, it could be six months — and there’s nobody to talk to,” White said.

Ebelt said long-term care facilities were provided information on how to prepare for the unwinding process. He said new Medicaid cases for long-term care facilities are complicated and can take time.

Stan Klaumann lives in Ennis and has power of attorney for his 94-year-old mom, who resides in one of Guardian’s assisted living homes. Klaumann said that while she never lost coverage, the state didn’t make Medicaid payments toward her long-term care for more than four months and he still doesn’t know why.

He said that since last fall the state hasn’t consistently mailed him routine paperwork he needs to fill out and return in exchange for Medicaid payments to continue. He tried the state’s call center, he said, but each time he waited on hold for more than two hours. He made four two-hour round trips to his closest office of public assistance to try to get answers.

Sometimes the workers told him that there was a state error, he said, and other times that he was missing paperwork he’d already submitted, such as where money from selling his mom’s car went.

“Each time I went, they gave me a different answer as to why my mother’s bills weren’t being paid,” Klaumann said.

Across the nation, people have reported system errors and outdated contact information that led states to drop people who qualify. At least 28 states paused procedural disenrollments to boost outreach to people who qualify, according to federal data. Montana stuck to its original time frame and has a higher procedural disenrollment rate than most other states, according to KFF.

Stephen Ferguson, executive director of Crosswinds Recovery in Missoula, said the substance use disorder program doesn’t have a full-time person focused on billing and sometimes doesn’t realize clients lost Medicaid coverage until the state rejects thousands of dollars in services that Crosswinds submits for reimbursement. After that, it can take months for clients to either get reenrolled or learn they truly no longer qualify.

Ferguson said he’s writing grant proposals to continue to treat people despite their inability to pay.

“We’re riding by the seat of our pants right now,” he said. “We are unsure what next month or the next quarter looks like.”

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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Those with Medicare may pay a lower coinsurance for some Part B drugs if the drug’s price increases faster than the rate of inflation.