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¿Qué pasa si se aprueba una ley pero nadie la hace cumplir? Eso es básicamente lo que ha ocurrido con una pequeña pero útil normativa sobre los hospitales y la asistencia financiera para cubrir facturas médicas.

La Ley de Cuidado de Salud a Bajo Precio (ACA), también conocida como Obamacare, requiere que los hospitales sin fines de lucro pongan a disposición de los pacientes de bajos ingresos asistencia financiera, y que publiquen esas políticas en línea.

En los Estados Unidos, más de la mitad de los hospitales son sin fines de lucro, y en algunos estados todos o casi todos los hospitales lo son. Pero muchas personas que califican para recibir asistencia financiera —o “atención caritativa”, como también se la llama— nunca la solicitan.

Jared Walker está ayudando a correr la voz. Ha fundado Dollar For, una organización que ayuda directamente a las personas a utilizar las normas de asistencia financiera de los hospitales para hacer frente a las facturas médicas imposibles de pagar. Walker se ganó la atención del público a principios de este año a través de un TikTok viral que hizo una noche de manera informal.

En el video, de 60 segundos, Walker expone los aspectos básicos de la solicitud de asistencia financiera hospitalaria, en respuesta a un aviso que le pide a los TikTokers compartir “algo que hayas aprendido y que pareciera ilegal saber”.

“La mayoría de los hospitales de los Estados Unidos no tienen ánimo de lucro, lo que significa que deben tener políticas de asistencia financiera o de atención caritativa”, dice en el video. “Esto va a sonar raro, pero lo que esto significa es que si ganas menos de cierta cantidad de dinero el hospital tiene la obligación legal de perdonar tus facturas médicas”.

En el video se explican los fundamentos de la solicitud de atención caritativa en los hospitales, y eso es lo que él dice que utiliza para “erradicar” las facturas médicas.

“An Arm and a Leg”, un podcast sobre el costo de la atención médica, ha estado cubriendo el trabajo de la asociación de Walker desde que el video se convirtió en viral, así como la batalla de décadas por establecer las reglas de caridad.

Las siguientes son cinco estrategias que Walker comparte durante las sesiones mensuales de formación de voluntarios:

1. ¿Cómo encontrar estas normas?

El truco de Walker para encontrar la política de asistencia financiera de un hospital es muy sencillo: búscalo en Google. Escribe el nombre del hospital, seguido de “política de asistencia financiera” o “política de atención caritativa”. Los primeros resultados de la búsqueda serán probablemente un resumen de la política y una aplicación.

Tu primera intención puede ser ir a la página principal del hospital. Pero probablemente sea un error. Según Walker, estas normas suelen estar ocultas en los menús de los sitios web de los hospitales. En muchos estados, las leyes de atención caritativa son más específicas que lo que se indica en ACA, y los hospitales pueden estar obligados a destacarlas de manera prominente.

Es raro que estas normas no estén disponibles en línea en absoluto, pero en algunos casos, dijo Walker, puede que tengas que llamar al hospital y pedirles una solicitud.

2. ¿Quién califica?

La mayoría de las políticas de atención caritativa de los hospitales se basan en los ingresos, utilizando porcentajes de las directrices federales de pobreza para definir la elegibilidad. En un ejemplo, Walker mostró las directrices del Hospital St. Luke’s de Kansas City, donde los pacientes que ganan el 200% de los niveles federales de pobreza son responsables del 0% de su factura. Esa cifra era de poco más de $2,000 al mes en 2021. Aquellos que ganan entre el 201% y el 300% eran elegibles para ciertos descuentos.

¿No tienes claro cómo se comparan tus ingresos con los niveles federales de pobreza? Hay calculadoras en internet que te ayudarán. Recuerda que tu hogar eres tú, más tu cónyuge, y cualquier persona que declares como dependiente en tus impuestos. Quienes comparten la vivienda no cuentan.

Las solicitudes suelen requerir documentación que demuestre tus ingresos. Los hospitales piden cosas como talones de pago recientes, prueba de desempleo, cartas de concesión de la Seguridad Social y declaraciones de impuestos, según Walker. Los documentos exactos que puede pedir el hospital pueden variar. Pero un hospital no puede negarte la ayuda por no proporcionar un documento que no se especifica en la solicitud.

3. ¿Presionado por los pagos? Todavía puedes tener tiempo

El IRS exige a los hospitales sin fines de lucro que den a los pacientes un período de gracia de 240 días (unos ocho meses), a partir de la fecha de facturación inicial, para solicitar asistencia financiera. Pero los hospitales están autorizados a enviar las facturas a las agencias de cobro mucho antes, a menudo después de sólo 120 días.

En ese momento, los pacientes suelen sentirse acosados por las notificaciones de las agencias de cobro. Aun así, les pueden quedar meses para solicitar asistencia financiera, y avisar a las agencias de que se está tramitando una solicitud con el hospital puede, a veces, frenar el envío de cartas.

“El hospital puede sacarte de los cobros con la misma facilidad con la que te mete en ellos”, afirmó Walker.

En algunos casos, los hospitales perdonan las facturas que tienen más de 240 días. E incluso de varios años atrás, dijo Walker. No está de más pedir ayuda.

4. ¿Parece que no vas a calificar? Escribe una carta

Si no cumples los requisitos basados únicamente en los ingresos, pero sigues sin poder pagar las facturas del hospital, no te desanimes. Lo mismo ocurre si la política de ayuda financiera del hospital especifica que sólo pueden calificar las personas no aseguradas; es posible que tengas un seguro, pero que aun así te encuentres con facturas gigantescas que no puedes pagar.

Walker aseguró que mandar una carta explicando las dificultades financieras junto con la solicitud puede ser de gran ayuda. De hecho, anima a todos los pacientes a que adjunten una carta, aunque su solicitud parezca sólida.

“Hay otros seres humanos que las leen y las cartas son de gran ayuda”, dijo. En última instancia, cada hospital decide quién recibe la asistencia que está legalmente obligado a proporcionar. Presenta tu caso.

5. Sí, es posible que tengas que enviarla por fax

Aunque muchos hospitales disponen de portales digitales que permiten pagar las facturas en línea, no suele haber un equivalente para solicitar asistencia financiera. Muchas solicitudes sólo ofrecen una dirección postal. Pero Walker y su equipo han comprobado que las solicitudes enviadas por correo se pierden con frecuencia.

En su lugar, recomiendan llevar la solicitud al hospital y entregarla en mano o enviarla por fax. Las bibliotecas públicas, los locales de FedEx y ciertos servicios en línea hacen posible el envío por fax incluso si, como la mayoría de la gente, no ha utilizado un aparato de fax desde finales de los años 90.

Cuando se trata de acceder a la atención benéfica, “vas a tener que pasar por saltar un montón barreras”, señaló Walker, “pero vale la pena”.

Emily Pisacreta es reportera y productora de “An Arm and a Leg”, un podcast sobre el costo de la atención sanitaria que es coproducido con KHN.

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Emily Pisacreta

What if a law passed but no one enforced it? That’s essentially what has happened with one small but helpful rule about hospitals and financial assistance for medical bills.

The Affordable Care Act, the health law also known as Obamacare, requires nonprofit hospitals to make financial assistance available to low-income patients and post those policies online. Across the U.S., more than half of hospitals are nonprofit — and in some states all or nearly all hospitals are nonprofit. But many people who qualify for financial assistance — or “charity care,” as it is sometimes known — never apply.

Jared Walker is helping get the word out. He founded Dollar For, an organization that directly helps people use hospital financial assistance policies to overcome unaffordable medical bills. Walker earned the public’s attention early this year through a viral TikTok he made on a lark, late one night.

In the 60-second video, Walker outlines the basics of applying for hospital financial assistance, in response to a prompt that asks TikTokers to share “something you’ve learned that feels illegal to know.”

“Most hospitals in America are nonprofits, which means they have to have financial assistance or charity care policies,” he says in the video. “This is going to sound weird, but what that means is if you make under a certain amount of money the hospital legally has to forgive your medical bills.”

The video outlines the basics of applying for hospital charity care, which he says he uses to “crush” medical bills.

“An Arm and a Leg,” a podcast about the cost of health care, has been covering Walker and his organization’s work since the video’s viral moment, as well as the decades-long fight to establish charity care rules that preceded it.

Here are five strategies Walker endorses and shares during monthly volunteer training sessions:

1. How do you find the policy?

Walker’s trick for finding a hospital’s financial assistance policy is as straightforward as it gets: Google it. Enter the hospital’s name, followed by “financial assistance policy” or “charity care policy.” The first search results are likely to be an outline of the policy and an application to submit.

Your first instinct might be to go to your hospital’s home page. But that’s likely a mistake. Policies tend to be hidden from hospital website menus, according to Walker. In many states, charity care laws are more specific than what’s outlined in the ACA, and hospitals may be required to display their financial assistance policies prominently.

It’s rare for the policies not to be available online at all, but in some cases, Walker said, you may need to call the hospital and ask for an application.

2. Who qualifies?

Most hospital charity care policies are income-based, using percentages of the federal poverty guidelines to define eligibility. In an example, Walker showed the guidelines for St. Luke’s Hospital of Kansas City, where patients earning 200% of the federal poverty guidelines were responsible for 0% of their bill. That figure was just over $2,000 a month in 2021. Those making 201% to 300% were eligible for certain discounts.

Not sure how your income compares to the federal poverty guidelines? Here’s one of many helpful online calculators. Remember, your household is you, plus your spouse, plus anyone you claim as a dependent on your taxes. Roommates don’t count.

Applications typically require documentation to prove your income. Hospitals ask for things like recent pay stubs, proof of unemployment, Social Security award letters and tax returns, according to Walker. Exactly which documents the hospital may ask for can vary. But a hospital can’t deny you for failing to provide a document that isn’t spelled out in the application.

3. In collections? You may still have time.

The IRS requires nonprofit hospitals to give patients a grace period of 240 days (about eight months) from the initial billing date to apply for financial assistance. But hospitals are allowed to send bills to collection agencies much earlier than that — often after just 120 days.

At that point, patients often feel as though they’re being hounded by notifications from collection agencies. Still, patients may have months remaining to apply for financial assistance, and alerting the collection agents that an application with the hospital is in process can sometimes stop the letters.

“The hospital can take you out of collections just as easily as they put you there,” Walker said.

In some cases, hospitals will forgive bills that are much older than 240 days. When in doubt, applying may be worth it even for bills that are several years old, Walker said. It does not hurt to ask for help.

4. Looks like you won’t qualify? Write a letter.

If you don’t qualify on income alone but you still can’t afford your hospital bills, don’t rule yourself out. The same applies if the hospital’s financial aid policy specifies that only uninsured people qualify; you might have insurance but are still looking at giant bills you can’t pay.

Walker said a letter of financial hardship attached to an application can help. In fact, he encourages each patient to attach a letter, no matter how strong their application seems.

“These are real people reading these and the letters go a long way,” he said. Ultimately, each hospital is making a judgment call about who gets the assistance it is legally obligated to provide. Make your case.

5. Yes, you may need to fax it in.

While many hospitals have digital portals to enable online bill-paying, there’s usually no equivalent for applying for financial assistance. Many applications offer only a mailing address. But Walker and his team have found that applications sent by mail frequently get lost.

Instead, they recommend either walking the application into the hospital and delivering it by hand or faxing it. Public libraries, packaging stores like FedEx and certain online services make faxing possible even if, like most people, you haven’t used a fax machine since the late 1990s.

When it comes to accessing charity care, “you’re gonna have to jump through a lot of hoops,” Walker said, “but it’s worth it.”

Emily Pisacreta is a reporter and producer with “An Arm and a Leg,” a podcast about the cost of health care that is co-produced with KHN.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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At the height of the covid-19 pandemic, people often relied on telemedicine for doctor visits. Now, insurers are betting that some patients liked it enough to embrace new types of health coverage that encourages video visits — or outright insists on them.

Priority Health in Michigan, for example, offers coverage requiring online visits first for nonemergency primary care. Harvard Pilgrim Health Care, selling to employers in Connecticut, Maine and New Hampshire, has a similar plan.

“I would describe them as virtual first, a true telehealth primary care physician replacement product,” said Carrie Kincaid, vice president of individual markets at Priority Health, which launched its plans in January as an addition to more traditional Affordable Care Act offerings.

The often lower-premium offerings capitalize on the new familiarity and convenience of online routine care. But skeptics see a downside: the risk of overlooking something important.

“There’s a gestalt of seeing a patient and knowing something is not right, such as maybe picking up early on that they have Parkinson’s,” or listening to their heart and discovering a murmur, said Dr. David Anderson, a cardiologist affiliated with Stanford Health Care in Oakland, California. He said online medicine is a great tool for follow-up visits with established patients but is not optimal for an initial exam.

When enrolling in one of the new plans, patients are encouraged to select an online doctor, who then serves as the patient’s first point of contact for most primary care services and can make referrals for in-person care with an in-network physician, if needed. It’s possible patients never meet their online doctor in person.

Many insurers offering virtual-first plans hire outside firms to provide medical staff. The physicians may hold licenses in several states and not be located nearby. Insurers say participating online doctors can access patients’ medical information and test results through the insurers’ electronic medical records system or those of the third-party online staffing firm. What might prove tricky, experts warn, is transferring information from physicians, clinics or hospitals outside of an insurer’s network. Sharing patient information via EMRs is challenging even for doctors operating under traditional insurance plans with in-person visits — especially moving data between different health systems or specialty practices.

The virtual-first concept was so new that Priority Health called those enrolling this year to ensure they understood how it worked. “If people were more comfortable with brick-and-mortar, they should choose other options,” Kincaid said, adding that the plans have drawn 5,000 enrollees since January, a number she hopes will double next year.

Other versions of telehealth plans are available, offered by big names such as Humana, Kaiser Permanente, Oscar and UnitedHealthcare. Some emphasize but don’t require that primary care starts online. Some are aimed directly at consumers. Others are sold to employers.

Oscar Virtual Care health plans, sold in several states including Texas, Florida and New York, allow patients to choose between online or in-person services.

“These are not virtual-only plans,” said Marianna Spanos, an Oscar vice president and general manager of its virtual care division. “You can always opt to see a more traditional provider.”

Although Kaiser Permanente uses its own in-house medical staff, most insurers rely on contracted physicians, mental health therapists and other staff members, often provided by San Francisco-based Doctor on Demand.

Doctor on Demand launched in 2013, aimed at individual consumers. Starting with a Humana contract in 2019, it has since expanded to offer staffing for several other insurers. The company, which has its own electronic medical records system, hires a range of primary care, mental health and other medical providers. Physicians must be board-certified. Pay is partly based on how many patients they see, and there is no upper limit. Some want to work part time, for example, and many work from home.

In general, virtual-first health plans may carry lower premiums or provide such financial incentives as no copays for online visits. All boast that members can get appointments quickly, sometimes within minutes. Patients with serious problems are assisted in arranging emergency help. If online physicians determine patients need a blood test, immunization or a visit with a specialist, they refer them to a local practice, clinic or specialist within the insurer’s network.

As a strategy to contain costs, think HMO 2.0.

“There’s more control over the patient interaction and where they get referred,” said Sabrina Corlette, a research professor and co-director of the Center on Health Insurance Reforms at Georgetown University.

Still, patients should be aware that some of these plans may allow a brick-and-mortar visit only if their virtual doctor, who may have never examined them in person, deems it necessary.

Skeptics note that many circumstances demand in-person care. One recent study estimated about 66% of primary care visits required it. For example, it’s impossible to check reflexes and difficult to examine tonsils for infection virtually.

Patients in some programs, including Harvard Pilgrim’s, are sent kits that can include devices like blood pressure cuffs and thermometers — though at-home medical measuring devices are often not as accurate as those used in offices. Online physicians may also ask a patient to feel for swollen lymph nodes, shine a light into their throat while on camera or take other actions to help the physician diagnose a problem.

Kincaid, at Priority Health, noted that Doctor on Demand also sets protocols on children’s wellness visits, which it says must be done in person.

“It’s important for children’s wellness visits to get accurate height and weight measures and immunizations,” Kincaid said.

When considering virtual-first plans, advocates say, patients should look closely not just at premiums but also at deductibles and copayments, which may be set at levels that discourage in-person care. Rules are varied and dizzying.

The VirtualBronze plan offered through the federal ACA marketplace in parts of Texas by Community Choice Health, for example, requires hefty patient contributions for many types of in-person visits.

Patients incur no copay for using online Doctor on Demand physicians for primary care visits or for accessing in-person preventive services as defined by the ACA, such as immunizations or cancer screenings. But for other in-person services, Community Choice’s virtual plan will cost patients out-of-pocket because they pay the cost of the care until they meet an annual $8,530 deductible.

Kaiser Permanente’s Virtual Complete plan offered to large employers carries no copay for online care. Patients can opt to see an in-person doctor three times a year for primary care if they’re willing to pay a copay. After those three visits, any additional in-person visits are subject to a deductible.

Plans sold through federal or state marketplaces and those offered by employers must meet the ACA’s requirements. That includes a range of services, from doctor visits to hospital care.

Corlette, at Georgetown, said consumers should be wary of plans that are not ACA-compliant.

She fears the advent of plans that give patients “access to online providers, but nothing else.” And that, she said, “would not be considered major medical insurance.”

Julie Appleby:
jappleby@kff.org,
@Julie_Appleby

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Julie Rovner, Kaiser Health News

Can’t see the audio player? Click here to listen on Acast. You can also listen on Spotify, Apple Podcasts, Stitcher, Pocket Casts or wherever you listen to podcasts.

Should covid vaccines be mandated? The answer to that question has become predictably partisan, as with almost everything else associated with the pandemic. Even as the federal government prepares to issue rules requiring large employers to ensure their workers are vaccinated, GOP governors are trying to ban such mandates, leaving employers caught in the middle.

Meanwhile, on Capitol Hill, Democrats are still working to reach a consensus on a package of social-spending improvements, the size of which will depend largely on how much they can cut prices for prescription drugs.

This week’s panelists are Julie Rovner of KHN, Alice Miranda Ollstein of Politico, Jen Haberkorn of the Los Angeles Times and Mary Ellen McIntire of CQ Roll Call.

Among the takeaways from this week’s episode:

• Congressional Democrats’ struggle to find a compromise on a $3.5 trillion spending package for health and other social programs looks likely to push them past their self-imposed deadline of the end of October to pass a bill. Leaders are wrestling with what to cut as they meet demands from moderates in the party to bring the spending down.
• Everything in that package appears vulnerable at this stage in the negotiations. Party leaders are considering a variety of strategies, including throwing out some proposals or setting up the new benefits over a shorter time frame to test whether they work and the public appreciates them.
• It appears that Democrats’ priorities will include proposals to enhance benefits for children. But the health programs at stake — new benefits for Medicare, providing insurance to low-income residents of states that have not expanded their Medicaid programs, and extending the enhanced premium subsidies for the Affordable Care Act — each have strong constituencies and will be hard for leaders to settle on.
• The proposal to add billions of dollars to long-term care programs may draw the short straw. However, it does have some strong allies in Congress, including Sens. Ron Wyden (D-Ore.) and Bob Casey (D-Pa.).
• Democratic leaders hope to fund some of the initiatives in this package by cutting Medicare’s drug spending. A poll by KFF this week showed that is a very popular notion, even among Republicans. But drugmakers are fighting that strategy with major ad campaigns and political donations. They need to pick off only a couple of vulnerable lawmakers to thwart the effort since Democrats have razor-thin majorities in both the House and Senate. House Speaker Nancy Pelosi, however, appears determined to get some sort of provision on drug price negotiations in the bill, even without the full effect of her original plan.
• The Department of Labor reportedly has sent a proposed rule requiring large employers to have their workforce vaccinated to the Office of Management and Budget for review. That means the rule could be coming soon. But it is bound to run headlong into opposition in conservative states, like Texas, where Republican Gov. Greg Abbott has banned mandates. The issue will likely end up in federal court.
• The fight over vaccine mandates highlights a divide in the Republican Party between the business-oriented faction that wants to move past the pandemic and the more libertarian wing of the party. Some of the most conservative political leaders lean toward that libertarian wing and see the vaccine mandate as a way to excite the base. The experience of some major companies, however, suggests that businesses and many workers don’t object to mandates. One example is United Airlines, where 99% of workers have been vaccinated.
• As the federal courts bat the Texas abortion law back and forth, it appears headed for a review by the Supreme Court. Some analysts suggest that the urgency of the issue could push the court to take on the Texas issue before they hear a case in December about a different law seeking to limit abortion in Mississippi. But the Supreme Court generally likes to have cases fully debated in lower courts before coming to the justices, so a decision on the Texas law may have to wait.
• The issue of abortion is getting a good bit of advertising time in the Virginia gubernatorial race. Democratic candidate Terry McAuliffe is telling voters he will work to keep abortions legal in the state and suggesting his opponent, Glenn Youngkin, will not. It’s a strategy that California Gov. Gavin Newsom used as he successfully fought a recall in an election last month.

Also this week, Rovner interviews Beth Macy, author of the best-selling “Dopesick: Dealers, Doctors and the Drug Company That Addicted America” and an executive producer of a miniseries of the same name now streaming on Hulu.

Plus, for extra credit, the panelists recommend their favorite health policy stories of the week they think you should read, too:

Julie Rovner: KHN’s “6 Months to Live or Die: How Long Should an Alcoholic Liver Disease Patient Wait for a Transplant,” by Aneri Pattani

Jen Haberkorn: The Washington Post’s “Covid and Cancer: A Dangerous Combination, Especially for People of Color,” by Laurie McGinley

Mary Ellen McIntire: NPR’s “Judging ‘Sincerely Held’ Religious Belief Is Tricky for Employers Mandating Vaccines,” by Laurel Wamsley

Alice Miranda Ollstein: The 19th’s “Kansas Has Become a Beacon for Abortion Access. Next Year, That Could Disappear,” by Shefali Luthra

To hear all our podcasts, click here.

And subscribe to KHN’s What the Health? on Spotify, Apple Podcasts, Stitcher, Pocket Casts or wherever you listen to podcasts.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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En una semana reciente, una neoyorquina tuvo una prueba gratuita de covid-19 en un abrir y cerrar de ojos, y su resultado al día siguiente, mientras que una residente de Colorado tuvo que desembolsar $50 para una prueba que tuvo que hacerse a dos ciudades de distancia de su pueblo natal después de una frenética ronda de visitas a farmacias.

Un residente de Montana condujo una hora de ida y otra de vuelta para hacerse una prueba, y se preguntó si el resultado volvería a tardar cinco días.

Si bien la prueba de covid es mucho más fácil de conseguir de lo que era al principio de la pandemia, la capacidad de obtenerla, con resultados oportunos, puede variar ampliamente en todo el país. Un sistema de pruebas fragmentado, una logística complicada, el agotamiento de los técnicos y los picos de demandas contribuyen a este viaje lleno de baches.

“Todavía estamos donde estábamos hace 18 meses”, dijo Rebecca Stanfel, la mujer de Montana que se hizo la prueba en septiembre en Helena y tuvo que esperar cinco días por el resultado, después de haber estado expuesta a alguien con el virus.

Las esperas impredecibles pueden ser un problema para quienes intentan planificar un viaje, regresar a la escuela después de una cuarentena, o incluso, si tienen, recibir un tratamiento con anticuerpos monoclonales que salvan vidas dentro de la ventana óptima.

La Casa Blanca dijo a principios de octubre que planea comprar pruebas rápidas de antígenos por valor de $1,000 millones para ayudar a mejorar el acceso a los kits de venta libre difíciles de encontrar. Pero las personas también enfrentan problemas para obtener pruebas moleculares, incluidas las pruebas de PCR, que son el estándard de oro en tests.

Los laboratorios de salud pública ya no están paralizados por los cuellos de botella en el suministro de componentes de prueba individuales, como hisopos o reactivos, enfatizó Kelly Wroblewski, directora de programas de enfermedades infecciosas de la Asociación de Laboratorios de Salud Pública. Pero todavía soportan una gran carga de pruebas, que, a estas alturas, se esperaba que pesaran sobre laboratorios comerciales u hospitalarios.

Los laboratorios de todo tipo también enfrentan escasez de trabajadores al igual que los restaurantes, dijo Mara Aspinall, cofundadora del programa de diagnóstico biomédico de la Universidad Estatal de Arizona, quien también escribe un boletín semanal que monitorea la capacidad de pruebas a nivel nacional y forma parte de la junta de una empresa de pruebas rápidas.

“La escasez de personal es muy, muy real y está impidiendo que las personas aumenten su capacidad”, dijo.

Algo tan simple como la proximidad también marca la rapidez con la que los examinados obtienen resultados.

“El norte de Maine es un buen ejemplo”, dijo Aspinall. “Todo lo que hagas con PCR te llevará un día más porque tienes que trasladar la muestra en avión o en auto”.

Incluso en un lugar como Longmont, Colorado, cerca de muchos laboratorios y hospitales, las muestras de PCR del sitio local de pruebas masivas se envían por aire todas las noches a un laboratorio en Carolina del Norte.

Este sitio de pruebas masivo se mudó recientemente a su ubicación original en el recinto ferial del condado después de estar en el estacionamiento de una pequeña iglesia durante el verano. La demanda de pruebas de PCR en el condado se cuadruplicó de 600 pruebas semanales en julio a 2,500 en septiembre.

Chris Campbell, gerente de emergencias de Salud Pública del condado de Boulder, lo atribuye a la reapertura de las escuelas, un aumento en las infecciones y la dificultad para adquirir pruebas rápidas de venta libre.

Campbell dijo que a veces a los residentes les tomaba cuatro o cinco días obtener sus resultados de PCR, aunque eso se redujo a dos a medida que el contratista con el que trabajan, Mako Medical, ha recuperado la capacidad de su laboratorio.

El sitio de pruebas masivo en Longmont, Colorado, volvió a su lugar original en el predio ferial de Boulder, luego de estar en el estacionamiento de una pequeña iglesia durante el verano. (Rae Ellen Bichell / KHN)

Las pruebas de PCR en el condado de Boulder, Colorado se han cuadruplicado, pasaron de unas 600 a la semana en julio a unas 2,500 a la semana en septiembre. (Rae Ellen Bichell / KHN)

“No hay excusa para tener un tiempo de respuesta tan largo. Realmente afecta nuestra capacidad para frenar realmente la transmisión”, dijo Campbell. “Y también tiene un impacto económico en las empresas, las escuelas y los jardines de infantes”.

El laboratorio de Mako funciona las 24 horas del día, los 7 días de la semana, y la compañía utiliza aviones privados para acelerar el envío, según un comunicado de Josh Arant, director de operaciones. Si bien el tiempo medio semanal de respuesta de Mako nunca superó las 72 horas el mes pasado, el comunicado dice que en las últimas semanas ha devuelto los resultados a los residentes del área un promedio de 46 horas después de la recolección de la muestra.

Ahora hay dispositivos portátiles que pueden eliminar la necesidad de enviar muestras. Pueden realizar análisis moleculares, incluida la PCR, en menos de una hora, un proceso que suele tardar entre cuatro y cinco horas en un laboratorio.

Un camión de pruebas de Washington, D.C. tiene tres máquinas Cepheid, cada una del tamaño de una impresora. Combinados, pueden proporcionar resultados de PCR a una docena de personas en menos de una hora, sin costo alguno para los examinados.

Aún así, la demanda supera la oferta de pruebas moleculares tan rápidas, debido en gran parte a la montaña rusa de aumentos repentinos de casos, explicó Doug Sharpe, vicepresidente de ventas de capital de laboratorio de Medline Industries, que suministra componentes de prueba para covid a laboratorios de todo el país. “No estamos paralizados. Estamos vendiendo más ensayos de los que vendimos en el apogeo en 2020″, agregó.

Gigi Kwik Gronvall, inmunóloga del Johns Hopkins Center for Health Security que dirige el seguimiento del centro de las pruebas de covid, sugirió que la variabilidad en el tiempo que se tarda en obtener resultados ha creado un mercado de vendedores si las empresas pueden entregar resultados en un tiempo específico. “La gente va a pagar por ese tipo de garantía”, dijo. “Existe este potencial para que se desplume a las personas, seguro que sí”.

MedRite ofrece resultados de PCR analizados en tres horas en Nueva York y Florida para aquellos que estén dispuestos a pagar más de $200 cada uno. La compañía ofrece otras pruebas, como pruebas de antígenos y pruebas de PCR más lentas en laboratorio, sin costo de bolsillo.

Celeste Di Iorio se sintió desplumada después de pasar un día conduciendo de una farmacia a otra en Fort Collins, Colorado, en busca de una prueba que diera una respuesta en menos de tres días. Como músico, había estado viajando fuera del estado y quería saber si podría ser contagiosa antes de asistir, entre otras cosas, a un memorial por un pariente que había muerto de covid. Ella y su pareja finalmente encontraron pruebas rápidas de antígenos en una farmacia a dos ciudades de distancia.

“Pagamos $50 cada uno por estas pruebas, lo que me enoja”, dijo. “Porque, ya sabes, todos hemos estado sin trabajo durante un año y medio, y este estado tiene el dinero”.

En Helena, Montana, Stanfel se ha hecho una prueba de PCR todas las semanas durante muchos meses porque toma medicamentos inmunosupresores para una enfermedad poco común llamada sarcoidosis.

Un cartel alerta a los consumidores en una farmacia Walgreens en Helena, Montana, el 5 de octubre de 2021, que las ventas del test casero para covid-19 están racionadas. (Matt Volz / KHN)

Sus médicos le dijeron que se hiciera la prueba con regularidad porque, aunque está completamente vacunada y ha recibido una dosis adicional de “refuerzo”, probablemente necesitaría un tratamiento de anticuerpos monoclonales lo antes posible si contrajera covid para prevenir una infección temprana.

Cuando Stanfel descubrió que una amiga a la que había visitado había dado positivo para covid, inmediatamente se hizo una prueba en el consultorio de su médico. Tardó cinco días en enterarse de que era negativa.

El laboratorio de salud pública de Montana se encuentra en la ciudad de Stanfel, pero el vocero del departamento de salud estatal, Jon Ebelt, dijo que el volumen de pruebas desde principios de agosto ha excedido regularmente la capacidad del laboratorio. Por eso, tuvieron que priorizar las pruebas de personas hospitalizadas o sintomáticas y enviar otras muestras a laboratorios privados, un proceso que puede extender el tiempo de espera hasta siete días para obtener resultados.

En la ciudad de Nueva York, donde las van para pruebas móviles están estacionadas en todos los distritos y se ofrecen pruebas en el hogar en persona, los residentes informan que los resultados de las pruebas moleculares son rápidos porque los laboratorios que analizan sus muestras están cerca.

Por ejemplo, en Manhattan, Justin Peck regresó de un viaje en auto por Canadá un martes por la noche, caminó unos cinco minutos hasta una camioneta de pruebas móviles el miércoles y obtuvo los resultados de PCR el jueves por la mañana, lo que lo dejó libre justo a tiempo para ir a trabajar por primera vez en 18 meses como bailarín, en el elenco del “El fantasma de la ópera”, en Broadway.

La temporada de gripe puede aumentar la demanda y complicar más las cosas, asegura Aspinall.

Rae Ellen Bichell:
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Patients are months away from not having to worry about most surprise medical bills — those extra costs that can amount to hundreds or thousands of dollars when people are unknowingly treated by an out-of-network doctor or hospital.

What’s not clear is whether the changes in law made by the No Surprises Act — which takes effect Jan. 1 — will have the unintended consequences of shifting costs and leading to higher insurance premiums.

Probably not, many policy experts told KHN. Some predict it may slightly slow premium growth.

The reason, said Katie Keith, a research faculty member at the Center on Health Insurance Reforms at Georgetown University, is that a rule released Sept. 30 by the Biden administration appears to “put a thumb on the scale” to discourage settlements at amounts higher than most insurers generally pay for in-network care.

That rule drew immediate opposition from hospital and physician groups, with the American Medical Association calling it “an undeserved gift to the insurance industry,” while the American College of Radiology said it “does not reflect real-world payment rates” and warned that relying on it so heavily “will cause large imaging cuts and reduce patient access to care.”

Such tough talk echoes comments made while Congress was hammering out the law.

The most recent guidance is the third issued to implement the law, which passed in late 2020 after a years-long battle. It was signed by then-President Donald Trump.

The No Surprises Act takes aim at a common practice: large, unexpected “balance bills” being sent to insured patients for services such as emergency treatment at out-of-network hospitals or via air ambulance companies. Some patients get bills even after using in-network facilities because they receive care from a doctor who has not signed on with an insurer’s network.

Patients were caught in the middle and liable for the difference between what their insurer paid toward the bill and the often-exorbitant charges they received from the provider.

Once the law takes effect next year, patients will pay only what they would have if their care had been performed in network, leaving any balance to be settled between insurers and the out-of-network medical providers. The law also gives insurers and providers 30 days to sort out discrepancies.

After that, unsettled bills can enter “baseball-style” arbitration, in which both sides put forth their best offer and an arbitrator picks one, with the loser paying the arbitration cost, which the rule sets for next year as between $200 and $500.

Uninsured patients who are billed more than $400 over an upfront estimate of the cost of their care may also bring cases to arbitration for a $25 administrative fee.

Businesses, like government services companies or those that review coverage disputes, can start applying now for certification as arbitrators. The rule estimates that about 50 will be selected by the three agencies overseeing the program, the Departments of Health and Human Services, Labor and Treasury, after showing “expertise in arbitration, health care claims experience, managed care, billing and coding, and health care law.” The rule also spells out that either party can object to a chosen arbitrator, and the one that is selected cannot be associated with an insurer or medical provider.

But which price to pick in arbitration?

The new rule specifies that the arbitrator generally should pick the amount closest to the median in-network rate negotiated by insurers for that type of care. Other factors, such as the experience of the provider, the type of hospital or the complexity of the treatment, can be considered in some circumstances, but not given equal weight.

By contrast, some of the more than a dozen state laws taking aim at surprise bills allow arbitrators to consider higher rates, such as billed charges set by hospitals or doctors, rather than negotiated rates, which potentially drive up spending.

A recent study, for example, found that in New Jersey — which has different arbitration rules than what is being set up for the federal program — cases were settled at a median of 5.7 times higher than in-network rates for the same services.

Unlike New Jersey, the federal government is specifically barring consideration of the highest amounts — the billed charges — and the lowest payment amounts, including those from Medicaid and Medicare programs.

“This seems likely to reduce premiums in addition to protecting patients from surprise bills,” said Loren Adler, associate director of the University of Southern California-Brookings Schaeffer Initiative for Health Policy, who co-authored the New Jersey study.

Still, the law’s impact on premiums is open to debate. Keith doubts they will change either way, although Adler thinks the slowdown in premium growth would be small.

Even the final rule says “there is uncertainty around how premiums will be ultimately affected” with much depending on how often disputed bills go to arbitration.

The latest rule cited a Congressional Budget Office estimate that provisions in the No Surprises Act could reduce premium growth by 0.5% to 1% in most years, but also noted an estimate from the Centers for Medicare & Medicaid Services that premiums  could slightly increase. Neither study isolated the effect of the arbitration guidelines from the rest of the statute.

Adler noted that relying heavily on the median in-network price likely means lower payments as compared with other measures but, still, “by definition a median is what half of doctors get paid, so this could, in theory, raise that for the other half.”

What’s likely, health policy experts said, is that the new law will prompt more providers to join insurer networks.

Some physicians — most often, emergency room doctors, anesthesiologists and radiologists — have avoided signing contracts with insurers. Instead, they typically set charges above the level of insurers’ reimbursement and sent surprise bills to patients for the difference.

The rule undercuts the incentive to use this business model.

It makes it “pretty clear” that hospitals, physicians, air ambulances and other medical professionals “should not count on staying out of network and then trying to use the federal process to capture higher reimbursement,” said Keith.

Some medical societies and advocacy groups predicted the law could have the opposite effect.

Insurers will use the disputes to “drive down payment to the point that it is no longer feasible for many providers to take that, or any insurance,” warned Katie Keysor, senior director of economic policy for the American College of Radiology, in an emailed statement.

Adler said that argument doesn’t fly when looking across the experience of states with similar laws. (Those state rules don’t apply to many types of job-based health insurance, but the federal rule will.)

“Every single surprise billing debate has done the opposite and pushed more people into the network,” he said.

Whether a group signs a contract with an insurer may matter less in the future, he said.

Once the law takes effect, “it’s completely irrelevant whether an emergency room doctor is in network or not,” he said. “For all intents and purposes, that doctor is in network. The patient will pay the in-network cost sharing and there is a price the provider has to accept, and the insurer has to pay.”

Julie Appleby:
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In one recent week, a New Yorker got a free covid-19 test in a jiffy, with results the next day, while a Coloradan had to shell out $50 for a test two cities from her hometown after a frantic round of pharmacy-hopping. A Montanan drove an hour each way to get a test, wondering if, this time, it would again take five days to get results.

While covid testing is much easier to come by than it was early in the pandemic, the ability to get a test — and timely results — can vary widely nationwide. A fragmented testing system, complicated logistics, technician burnout and squirrelly spikes in demand are contributing to this bumpy ride.

“We’re still where we were 18 months ago,” said Rebecca Stanfel, the Montana woman who had to wait five days for test results in Helena last month after being exposed to someone with the virus.

Unpredictable waits can be a problem for those trying to plan travel, return to school from a quarantine — or even get lifesaving monoclonal antibody treatment within the optimal window if they do have covid.

The White House said in early October it plans to buy $1 billion worth of rapid antigen tests to help improve access to the hard-to-find over-the-counter kits. But people are also facing problems getting molecular testing, including the gold-standard PCR tests.

Public health labs are no longer hamstrung by supply bottlenecks on individual test components such as swabs or reagents, said Kelly Wroblewski, director of infectious disease programs for the Association of Public Health Laboratories. But they are still bearing a large testing load, which she had expected to shift more to commercial or hospital-based labs by now.

Testing labs of all stripes are also facing worker shortages just like restaurants, said Mara Aspinall, co-founder of Arizona State University’s biomedical diagnostics program, who also writes a weekly newsletter monitoring national testing capacity and serves on the board of a rapid-testing company.

“The staffing shortage is very, very real and holding people back from increasing capacity,” she said.

Something as simple as proximity also still dictates how quickly test-takers get results.

“Northern Maine is a good example,” Aspinall said. “Anything you do with PCR is going to take an extra day because it’s got to be flown or driven a ways.”

Even in a place such as Longmont, Colorado, near many laboratories and hospitals, PCR samples from the local mass-testing site get shipped by air each evening to a lab in North Carolina.

That mass-testing operation recently moved back to its original location at the county fairgrounds after a summer stint in a small church parking lot. Demand for PCR tests in the county quadrupled from 600 weekly tests in July to 2,500 a week in September. Chris Campbell, emergency manager for Boulder County Public Health, attributes the heavy traffic to schools reopening, an uptick in infections and the difficulty in acquiring over-the-counter rapid tests.

The mass covid-19 testing operation in Longmont, Colorado, recently moved back to its original location at the Boulder County fairgrounds after a summer stint in a small church parking lot. (Rae Ellen Bichell / KHN)

Demand for PCR covid-19 tests in Boulder County, Colorado, quadrupled from 600 tests a week in July to 2,500 a week in September. (Rae Ellen Bichell / KHN)

Campbell said it sometimes took residents four or five days to get their PCR results, though that’s dropped to two as the contractor they work with, Mako Medical, has built its laboratory capacity back up.

“It’s pretty inexcusable to have a turnaround time that long. It really does impact our ability to really stop transmission,” Campbell said. “And also, it has an economic impact to businesses, to schools, to early childhood facilities.”

Mako’s lab operates 24/7 and the company uses private planes to speed up shipping, according to a statement from chief operating officer Josh Arant. While Mako’s weekly median turnaround time never exceeded 72 hours last month, the statement said, in recent weeks it has returned results to area residents an average 46 hours after specimen collection.

Portable devices now exist that can eliminate the need for shipping samples. They can do molecular analysis, including PCR, in under an hour — a process that typically takes at least four to five hours in a lab. A Washington, D.C., testing truck has three Cepheid machines on board, each about the size of a printer. Combined, they can give a dozen people PCR results in under an hour, at no cost to test-takers.

Still, demand outweighs supply for such fast molecular tests, due largely to the roller coaster of case surges, said Doug Sharpe, vice president of lab capital sales with Medline Industries, which supplies covid testing components to labs across the country. “I don’t think anybody thought we’d be sitting here,” he added. “We’re selling more assays than we did at the height in 2020.”

Gigi Kwik Gronvall, an immunologist with the Johns Hopkins Center for Health Security who leads the center’s tracking of covid testing, suggested that the variability in how long it takes to get results has created a seller’s market if companies can deliver results by a specific time. “People are going to pay for that sort of guarantee,” she said. “There’s this potential for people to get fleeced, for sure.”

MedRite offers PCR results analyzed in three hours in New York and Florida for those willing to pay more than $200 a pop. The company offers other tests, such as antigen tests and slower lab-based PCR tests, at no out-of-pocket cost.

Celeste Di Iorio felt fleeced after she spent a day driving from pharmacy to pharmacy in Fort Collins, Colorado, in search of a test that would give an answer in less than three days. As a musician, she’d been traveling out of state and wanted to know if she might be infectious before attending, among other things, a memorial for a relative who died of covid. She and her partner eventually found rapid antigen tests at a pharmacy two cities over.

“We just paid $50 apiece for these tests, which pisses me off,” she said. “Because, you know, we’ve all been out of work for a year and a half, and this state has the money.”

A sign tells customers at the Walgreens pharmacy in Helena, Montana, on Oct. 5, 2021, that sales of at-home covid-19 tests are being rationed. (Matt Volz / KHN)

In Helena, Montana, Stanfel has gotten a PCR test every week for many months because she takes immune-suppressing drugs for a rare condition called sarcoidosis. Her doctors told her to get the tests regularly because, even though she’s fully vaccinated — and has received an additional “booster” dose — she would likely need a treatment of monoclonal antibodies as soon as possible if she contracted covid to prevent an early infection from “developing into something really bad.”

When Stanfel found out a friend she had visited later tested positive for covid, she immediately got a test at her doctor’s office. It took five days to learn she had tested negative.

Montana’s public health lab is in Stanfel’s city, but state health department spokesperson Jon Ebelt said the volume of tests since early August has regularly exceeded the lab’s capacity. As such, they’ve had to prioritize tests from hospitalized or symptomatic people and send other specimens to private labs, a process that can stretch the wait time for results to up to seven days.

In New York City, where mobile-testing vans are parked in every borough and in-person home testing is offered, residents are reporting quick turnaround for molecular tests because the labs analyzing their samples are close by.

For example, in Manhattan, Justin Peck got back from a road trip to Canada on a Tuesday night, walked about five minutes to a mobile-testing van on Wednesday, and had PCR results by Thursday morning, clearing him just in time to go to work for the first time in 18 months as a dancer in “The Phantom of the Opera” on Broadway.

Aspinall said flu season will likely lead to an increase in demand for covid testing as people with covid-like symptoms seek answers about the cause of their illness, compounding existing staffing issues. “We’re at a very precarious point,” she said. “It’s not enough to go forward if the testing volume continues as I expect it will.”

Rae Ellen Bichell:
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Jenny Gold, Kaiser Health News

NEED HELP?

If you or someone you know is in a crisis, please call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or contact the Crisis Text Line by texting HOME to 741741.

In September 2020, Congress passed bipartisan legislation creating a three-digit national suicide hotline: 988. Think of it as an alternative to 911 for mental health emergencies.

The system is intended to make it easier to seek immediate help during a mental health crisis. Instead of calling 911 or the 10-digit national suicide hotline, Americans theoretically will be able to speak to a trained counselor by calling 988 from most any phone line.

The federal law allows states to raise funds for the effort by levying a surcharge on monthly bills for mobile and landline phone service. The money can be used to support the dedicated call centers, pay for trained mobile response teams to be dispatched instead of armed law enforcement officers, and bolster stabilization services for people in crisis.

States are required to have some version of the 988 system up and running by July 2022. But the actual shape it takes is up to each state.

In California, the state Department of Health Care Services announced in September it would spend $20 million to help launch the 988 system. AB 988 is legislation that would tack on up to 80 cents a month on phone lines in the state — both wireless and landline services — to provide ongoing funding for the system and associated services. The bill has faced opposition from the telecommunications industry, which argues the fee should be capped at 10 cents and fund only the cost of routing 988 calls to an appropriate crisis center. The bill has passed the Assembly and is expected to be taken up by the Senate next year.

Assembly member Rebecca Bauer-Kahan, an Orinda Democrat, is the principal author of AB 988, which she called the “Miles Hall Lifeline Act” in honor of a 23-year-old man who was fatally shot by police in Walnut Creek during a mental health crisis. His family said he had been diagnosed with schizoaffective disorder.

Bauer-Kahan, a Bay Area lawyer, talked to KHN’s Jenny Gold about efforts to get 988 operational in California and what the new system might be able to accomplish. The conversation has been edited for length and clarity.

Q: The new federal law requires that every state have a 988 phone system in place by July. How is California doing, and will we be ready?

I’m hopeful that we will. We definitely have more work to do. We appropriated $20 million in September to ensure that we have the startup costs to build up our call centers. The data is showing that we should expect about a 30% increase in call volume [for California’s 13 suicide prevention call centers] when the rollout happens for 988 in July. So, it’s really critical to ensure that the call centers have the ability to increase staffing, and train people so that we’re prepared.

Q: Why is it important to have an emergency system dedicated exclusively to mental health?

This is a health care issue, but currently it’s being treated as a public safety issue. And that’s leading to a whole host of problems. I’d say the largest problem is that [an estimated] 25% of all officer-involved shootings are people in mental health crisis. So that tells us that we aren’t getting the support we need to the people who need it.

Our law enforcement has been incredibly supportive of this effort because they know that there are people better trained to manage people who are in crisis. The largest mental health provider in the nation is the L.A. County jail, which is just the most upsetting thing I’ve heard. People shouldn’t be treated in our jails.

Q: What does the completed 988 system look like?

The federal legislation dictated that 988 calls have to be answered by certified suicide prevention call centers. We have 13 of those call centers in California, so they will be the people who answer.

Behind the call, the county where you live would be listening and determining whether you need dispatch. We believe, actually, a good percentage of callers will be served via just a phone call. But for those that need a response on the ground, there would be a warm handoff to county services.

People who have law enforcement showing up today would instead get a mobile crisis team show up to support them in that moment of crisis. Then they’d be handed off to stabilization services and long-term care for their mental health needs.

Q: What happens after emergency personnel respond to a 988 call? Would the patient be routed into a system that looks different from the one we have now, where people are so often taken to an emergency room or jail?

The goal is yes. They wouldn’t go to jail, because law enforcement isn’t the responder. So our jails would not continue to be our largest mental health care providers, but we would be building up a network of services.

Some people do need in-patient care that cannot be provided outside of the hospital, and we should make sure we have the [necessary] beds, which we don’t today. If somebody needs somebody to talk to weekly, then the county will be able to provide those services.

[We need to ensure that] the counties, who really should be the service providers, have the resources to provide care to those in need. And, currently, we just are woefully inadequate in the services that we can provide. The bill really defers to the counties with appropriate funding to create a system that will work for the community.

Q: We have a crisis that extends well beyond the point of police intervention, considering we don’t have places to treat people during mental health emergencies. Is that part of the vision for 988, or does it deal mostly with this very specific moment of initial contact?

I’ve always said in thinking about this legislation that this is a small piece of the puzzle. I will not say that I’m solving mental health in one piece of legislation. I am really focused on this piece of where we have law enforcement responding inappropriately today. How do we turn that into a health care response?

Now, do we need a complete, robust health care, mental health system underneath it? Yes. Am I creating that all through 988? No.

So there’s a lot of work that I think will go with this. I think it’s this incredible step in the right direction, but I by no means believe that it is going to solve all of our problems. The end goal is to have a complete continuum of care, so that the counties are able to provide the services that each individual needs to get them to a healthy place.

Q: Is there a way to raise funding through 988 to help with that broader continuum?

The bill funds both the mobile crisis response and stabilization services. So, we anticipate funding more than just the telephone operators. And we have fought tooth and nail to ensure that funding remains in the bill, because we believe that the phone system will be inadequate unless we have the services behind it to actually provide folks with the ability to be stabilized by their local counties.

[Having] the resources to provide exactly what each person in crisis needs is absolutely the goal. 988 is a piece of that puzzle. Sometimes you take the first step.

NEED HELP?

If you or someone you know is in a crisis, please call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or contact the Crisis Text Line by texting HOME to 741741.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Angela Hart and Samantha Young

SACRAMENTO — Gavin Newsom put California’s health care industry on notice when he was a candidate for governor, vowing in 2018 to go after the insurance companies, doctors and hospitals that leave many Californians struggling with enormous medical bills and rising insurance premiums.

He pledged to lead California’s single-payer movement, a high-stakes liberal dream that would eliminate private health insurance and slash how much providers are paid. The tough rhetoric continued after he was elected, when Newsom told insurers to “do their damn job” to improve mental health treatment or face fines, and he vowed to cut the health care industry’s soaring revenues.

“We’ve got to get serious about reducing health care costs,” the first-term Democrat said in January 2020 as he unveiled his proposal to establish an Office of Health Care Affordability that would do the unthinkable in a system powered by profits: set caps on health care spending and require doctors and hospitals to work for less money. “We mean business.”

Industry leaders were rattled. But rather than mobilize a full-throttle defense to sink Newsom’s effort to regulate them, they have used their political clout and close ties with the governor to devise a friendlier alternative that doctors, hospitals and insurance companies could live with.

When Newsom ultimately drafted legislation for the office, he took an idea health care executives had pitched and made it his own: Instead of capping prices or cutting revenues, he would allow industry spending to grow — but with limits.

Political infighting killed the legislation this year, but it is expected to come back in January and spark one of next year’s blockbuster health care battles.

“They’re fearful of what might happen to them, and they’re trying to protect their interests because they’re threatened,” David Panush, a veteran Sacramento health policy consultant, said about health care industry players. They know “there’s blood in the water and the sharks are coming.”

If Newsom’s plan to rein in health care spending succeeds, it could provide him some political cover as he campaigns for reelection next year, giving him a major health care win even as he sidesteps progressive demands such as creating a single-payer system.

But it could also cement the power of an industry that continues to wield immense influence — negotiating behind the scenes to protect its massive revenues and secure exemptions and side deals in exchange for its support.

“Every time we try to do something to reduce health care costs, it meets with huge opposition,” said state Assembly member Jim Wood (D-Santa Rosa), head of the Assembly Health Committee, who is working closely with the Newsom administration on this proposal.

Industry power players have only pushed back harder as lawmakers have tried to take them on, Wood said. “Anybody or anything that disrupts the status quo is met with huge resistance and huge resources to fight it,” he said.

◆◆◆

When Newsom took office in 2019, he knew public sentiment was turning against the health care industry. On average, health care costs were around $11,600 per person that year, up from $4,600 in 1999, according to federal data. In California, hospitals account for the biggest share of spending, nearly one-third, while 20% of health care dollars goes to doctors.

California consumers are demanding action, with 82% of state residents saying it’s “extremely” or “very” important for the governor and legislature to make health care more affordable, according to a 2021 poll from the California Health Care Foundation.

Much of Newsom’s tough talk on industry spending came early in his term. “We’re going to create specific cost targets for all sectors to achieve, and we are going to assess penalties if they don’t achieve those targets,” Newsom said in January 2020. “If that didn’t wake up members of the system, I don’t know what will.”

Newsom’s wake-up call came on the heels of tense legislative debates on bills that would have empowered the state to set health care prices and created a single-payer system. The measures gained surprising momentum but ultimately buckled under opposition from health care giants.

Then the covid-19 crisis hit and propelled the recall effort to oust him from office — and the wake-up call was met with a slap of the snooze button. The governor and his health industry allies nestled closer. Just as he needed them to be the state’s front line of defense, they needed him to keep hospitals from overflowing, to secure protective gear and to push vaccinations.

Health care titans became regular fixtures in Newsom’s orbit. His calendars, obtained by KHN, show that doctors, hospitals and health insurance leaders have routinely received access to the governor.

Carmela Coyle, head of the California Hospital Association, stood beside Newsom at the state emergency operations center in the early days of the covid crisis, and Paul Markovich, CEO of Blue Shield of California, obtained a lucrative no-bid state vaccination contract to implement Newsom’s vaccination effort.

The coziness of the industry’s relationship with Newsom burst into public view in late 2020 when he was photographed dining at the ritzy French Laundry restaurant with Dustin Corcoran and Janus Norman, the CEO and top lobbyist, respectively, of the state doctors’ lobby, the California Medical Association.

“There is no possible way we could have come out of this covid crisis where the health care industry was given so much power without influence coming along with that,” said Carmen Balber, executive director of the advocacy group Consumer Watchdog.

Newsom did not respond to questions about the industry’s influence, but spokesperson Alex Stack said his proposal to regulate health care spending “is a priority for this administration, and we look forward to continuing to work on this issue to get it done.”

Doctors and Blue Shield have given Newsom millions of dollars to support his political career over many years, including a $20 million donation in September 2020 from Blue Shield for his homelessness initiatives.

The recall effort earlier this year only solidified Newsom’s relationship with health care executives. Industry groups wrote checks to the California Democratic Party, which fought to keep Newsom in office. It received $1 million each from Blue Shield and the hospital lobby and $875,000 from the doctors’ lobby, according to state campaign finance records.

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Though Newsom vowed to go after the industry, he hasn’t aggressively taken it on, and health care executives and lobbyists continue to wield their influence as they shape the debate over the Office of Health Care Affordability.

That could put Newsom in a political bind as he runs for reelection — first in the June 2022 primary and then the November general election — because he will face intense opposing political pressure from liberal Democrats who want him to keep his campaign promise and adopt single-payer.

Health and political experts say Newsom can help alleviate that pressure by adopting a strict law going after spiraling health care spending.

“This issue isn’t going away — it does need to be addressed,” acknowledged Corcoran. The push to control costs “should be uncomfortable for everybody, but not horribly so.”

But it won’t be easy. After powerful industry leaders joined forces with organized labor and consumer advocates to propose a plan to the governor, they jammed negotiations with their demands, splintering the coalition and killing the effort this year.

Coyle, with the hospital association, had left the coalition early out of concern that hospitals were the primary target, and approached the Newsom administration independently. She is also asking Newsom to relax stringent earthquake safety standards for hospitals.

Corcoran wants to exempt “small” doctor practices — which he defines as practices with up to 100 doctors — from regulation, arguing that restrictive government cost controls could put them out of business, leading to increased industry consolidation and higher prices.

“The goal posts were constantly shifting,” said Yasmin Peled, a lobbyist for the advocacy group Health Access California, which was involved in negotiations. “The asks were constantly changing.”

Before negotiations completely broke down, Newsom embraced the idea floated by Coyle: The state should control growth, not impose revenue cuts. And it should not focus only on hospitals, but apply to all health care sectors, including doctors and insurers. (The pharmaceutical industry would not be subject to the cost control provisions of the measure because of restrictions in federal law, according to Wood’s office.)

With battle lines drawn, industry groups are poised for a major fight next year as Newsom and state Democratic lawmakers muscle through legislation. Their primary goal will be to protect their interests, said Mark Peterson, a professor of public policy, political science and law at UCLA.

“There’s no question this industry has power. The real question is what they do with it,” Peterson said. “They’re getting wins, and important ones.”

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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From her Baltimore dining room, Susan Goodlaxson can see her neighbor gardening across the street. But while other neighbors stop to chat, Goodlaxson just watches from the window. She uses a wheelchair, and there isn’t a single curb ramp on her block.

If the 66-year-old wanted to join, she’d have to jump her wheelchair down the 7½-inch curb and risk a fall. Ditto if she wanted to wheel over to the library, a trip that would require riding in the street to avoid rampless curbs and broken sidewalks.

“I don’t feel like it’s asking too much to be able to move your wheelchair around the city,” she said.

Federal law backs her up. Since 1990, the Americans With Disabilities Act has required governmental entities to provide people with disabilities access to programs and services enjoyed by their nondisabled peers. That includes sidewalks and curb ramps that make it possible to safely cross the street.

In Baltimore and many other communities across the U.S., there has been widespread noncompliance with this part of the law.

“An awful lot of [communities] have either disregarded their obligations under the ADA or made it the last priority,” noted Tom Stenson, a lawyer with Disability Rights Oregon, a nonprofit advocacy group. “There’s a culture throughout America of not taking the needs of people with disabilities seriously.”

In Baltimore, just 1.3% of curb ramps meet federal standards, according to the city’s own figures. In Oregon, about 9% of corners maintained by the state transportation department are compliant. San Jose, California, counted 27,621 corners with faulty or nonexistent curb ramps. Boston estimates fewer than half of its curb ramps are compliant.

In recent years, there’s been a flurry of class-action lawsuits, including one filed against Baltimore in June, with Goodlaxson among the plaintiffs.

Cities from Baltimore to Seattle have been sued for failing to make sidewalks accessible to people with disabilities and those who use wheelchairs. There has been widespread noncompliance with that part of the Americans With Disabilities Act. (Rosem Morton / for KHN)

In Baltimore, just 1.3% of curb ramps meet the federal standards, according to the city’s own figures. On Susan Goodlaxson’s block, there isn’t a single curb ramp. (Rosem Morton / for KHN)

Philadelphia was sued in 2019 over the condition of its sidewalks. Chicago was sued the same year for failure to install audible pedestrian signals, more than a decade after settling a suit over curb ramps. In 2018, Atlanta was sued. A survey there determined that only 20% of sidewalks were in sufficient condition to be used by people in wheelchairs or motorized scooters and about 30% had curb ramps. Seattle settled a class-action suit in 2017. San Francisco and Long Beach, California, were sued in 2014 to make their sidewalks more accessible to wheelchairs.

The city of New York and its transit authority have faced repeated major ADA lawsuits, some alleging the same lack of access for people with disabilities that was supposed to be addressed in a lawsuit that was filed in the 1990s and later settled.

Los Angeles settled what is believed to be the largest of these suits in 2015. Its problems with sidewalks and curb ramps were so widespread that the city estimated it would cost $1.4 billion and take 30 years to get into compliance. In the years leading up to the suit, the city wasn’t allocating money for sidewalk repairs, for the ADA or otherwise, even while paying out millions in injury claims.

In all, hundreds of jurisdictions have faced lawsuits or entered settlement agreements after failing to meet ADA requirements for pedestrians and mass transit users.

There’s a culture throughout America of not taking the needs of people with disabilities seriously.

Tom Stenson, a lawyer with Disability Rights Oregon

The sheer number of noncompliant sidewalks, curb ramps, pedestrian signals and subway stations illustrates the challenges for people with disabilities. It also leaves cities in a legal and financial squeeze, with the average curb ramp costing between $9,000 and$19,000. When the court requires a jurisdiction to build thousands of them to catch up, it can strain budgets.

The ADA and the 1973 Rehabilitation Act resulted in significant changes that improved access and accommodations for people with disabilities. The ADA is clear that people with disabilities have the same right to pedestrian infrastructure as anyone else.

There are requirements covering a curb ramp’s width, slope and other specifications. Even a 1-inch lip can be too high for a wheelchair user to navigate. A slope that is a few degrees too steep can tip someone to the ground. Sidewalks that are crumbling, pothole-filled or otherwise obstructed — with utility poles, for example — force wheelchair users into the street for a dangerous ride.

No one expected the ADA to fix all these problems immediately. Under the law, new sidewalks must be built for accessibility. As for existing sidewalks, a federal appeals court in 1993 ruled that curb ramps must be installed or regraded when the road is altered — say, when it’s repaved.

Yet by 1999 it was clear many jurisdictions were ignoring the law. The U.S. Department of Justice began enforcement efforts, entering into settlement agreements with more than 200 noncompliant jurisdictions representing every state since 2000.

Still, compliance still lags.

Officials in Baltimore, New York and Los Angeles declined to comment for this article. Tony Snyder, manager of the Oregon Department of Transportation’s ADA program, said siloed funding sources, strict regulations and costs have been among the hurdles over the years.

“It wasn’t that ODOT doesn’t value accessibility,” he said. While fewer than 10% of the state’s ramps meet standards, he said, a lot of noncompliant ramps are nonetheless “usable.”

Kelly Lynch, deputy director and general counsel for the Montana League of Cities and Towns, an association that represents 127 municipal governments, agreed that costs can add up. She’s been working to help fellow Montanans —and, she hopes, officials in other jurisdictions across the country through the National League of Cities — find a path toward full accessibility, even if the steps are incremental.

Some changes, including educating road crews on the rules, are relatively simple. But a bigger problem is a widespread lack of spending on the nation’s infrastructure. “Our streets are falling apart, and so are our sidewalks,” Lynch said.

Susan Goodlaxson of Baltimore says she repeatedly called the city asking for curb cuts and sidewalk repairs. She remembers a crew coming to look at the sidewalks, but nothing happened.(Rosem Morton / for KHN)

In August, the Senate defeated an amendment by Sen. Tammy Duckworth (D-Ill.) to a $1 trillion infrastructure bill that would have required state and local entities to describe how they would use federal dollars to improve accessibility for people with disabilities and for underserved communities. Sen. Pat Toomey (R-Pa.) called Duckworth’s amendment “politically correct virtue signaling” and argued that transit agencies don’t need that kind of federal oversight.

On top of the broader infrastructure issues, many officials don’t fully understand the ADA or its requirements, Lynch believes. And as the mother of a disabled son, she also said there’s another big factor at play: “People still discriminate against people with disabilities.”

As for Baltimore, Goodlaxson said she repeatedly called the city asking for curb cuts and sidewalk repairs. She remembers a crew coming to look at the sidewalks — and then nothing happening. Advocacy organizations tried to negotiate with city officials, hoping to get Baltimore’s infrastructure brought into compliance on a timetable. When that didn’t work, they filed suit.

Most of these kinds of ADA cases begin similarly, with negotiations long before lawsuits. Some jurisdictions settled quickly and worked hard at improvements. Other cases go less smoothly. Oregon’s transportation department, which was also sued, is in danger of missing its construction deadlines under the settlement. Some repairs had to be redone because they still fell short of ADA requirements.

Sometimes cities try to get cases thrown out of court by pointing to the 1993 appeals court decision and arguing there’s no evidence the road has been altered since then, so ADA requirements haven’t kicked in. In New York, the transit authority argues in an ongoing lawsuit that while wheelchair users can’t ride, say, three-quarters of the city’s subways because there are no elevators, they can instead take the bus.

Some jurisdictions fight bitterly. Los Angeles spent five years in court before agreeing to settle. Linda Dardarian, one of the plaintiff’s attorneys, said cities don’t fully recognize sidewalk and curb ramp accessibility as a civil right. “They have viewed it as just another maintenance obligation, [like] grooming street trees.”

When the case was settled, the judge ordered Los Angeles to pay nearly $12 million to cover the other side’s legal fees and costs, on top of the estimated $1.4 billion it will cost to come into compliance.

Under these settlements, repairs often stretch a decade or more, and the city or town typically must pay for surveys, measurements and disability consultants to ensure compliance.

From the plaintiffs’ point of view, the challenge of these lawsuits is that there isn’t a huge hammer to hold governments accountable.

“If you don’t build the ramps, the penalty is you have to build the ramps,” said Stenson of Disability Rights Oregon, which provided legal representation to a plaintiff in the Oregon transportation department suit.

For those who can easily get around town, the issue can be invisible.

Goodlaxson didn’t see the problem until she began using a wheelchair five years ago, after surgery for a brain tumor. She remembers seeing people riding their wheelchairs in the street, thinking, “that doesn’t look safe. But I didn’t give it any more thought.”

Now, she realizes “people are terrified, but they can’t do it any other way.”

A trip to the library for Baltimore’s Susan Goodlaxson, who uses an electric wheelchair, would require riding in the street to avoid rampless curbs and broken sidewalks. “I don’t feel like it’s asking too much to be able to move your wheelchair around the city,” Goodlaxson says.(Rosem Morton / for KHN)

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