“Marilyn is not a physically imposing person,” said Montana Board of Investments Executive Director Dan Villa, who worked closely with Bartlett in state government. “She is a blend of your favorite aunt, an accounting savant and a little bit of July Fourth fireworks.”

Bartlett, whose faith in data borders on fervent, hauls binders full of numbers everywhere she goes. “My focus has always been following the dollars,” she said. “You’ve got to roll up your sleeves and get down to the nitty-gritty detail, especially in health care.”

Bartlett’s success in Montana saved the state more than $30 million in three years by pegging hospital prices to a multiple of what Medicare pays. Now, she is an in-demand adviser to states, counties and businesses all trying to control health care costs. But as she’s hit the road, binders in tow, she’s found it difficult to replicate the Montana solution.

A Montana Miracle

Bartlett earned her reputation as administrator of the Montana state employee health plan, a role she assumed in 2014 as the plan hurtled toward insolvency. As Bartlett dug into the data, she discovered hospitals were charging the state as much as what they charge Medicare, the federal insurance program — for exactly the same services.

Historically, the state had accepted the seemingly arbitrary prices set by hospitals. Bartlett, staring down a $9 million shortfall, knew that had to change. She wanted the state to start dictating the rates they were willing to pay, but she needed a benchmark first.

She turned to Medicare. Unlike most payers, who bury prices in secret contracts, Medicare makes its payments public. Bartlett borrowed those rates and then more than doubled them — to 234% — knowing that hospitals often complain Medicare pays too little. This new kind of contract, known as reference-based pricing, was among the first attempted at this scale.

Bartlett expected the hospitals to chafe at the offer, but with Montana’s plan insuring 30,000 people, more than any other employer in the state, she had the upper hand. Despite what Bartlett described as “very, very tense” negotiations, all the state’s hospitals signed on.

Five years later, the state health plan regularly runs in the black. Villa, who was former Gov. Steve Bullock’s budget director, said governors dip into the plan’s reserves to fill budget gaps. “I now refer to the state health plan as the ATM,” he said.

The Player Becomes the Coach

Montana’s success became a small sensation, at least in health policy circles. Now, one big question remains — the same one that has deflated the highest hopes of so many health care leaders. Can it be replicated?

Many of the country’s employers are desperate to find out. Their costs have in just the past decade. Employee spending on health care is also on the rise, . Leading economics researchers point to as a key culprit.

Since retiring from Montana state government in December 2019, Bartlett said she has spoken at numerous conferences, given hours of free advice, and answered a seemingly endless stream of calls.

One of the first calls came from Trish Riley, executive director of the National Academy for State Health Policy (NASHP). Riley hired Bartlett in 2019 to serve as “a coach, cheerleader and mentor” for officials from dozens of states trying to cut costs, including New Jersey, which passed a bill in 2020 the state’s health coverage for teachers and estimated to save the state $30 million annually.

Bartlett is also advising regional business coalitions stretching from Houston to Maine and seeing early signs of progress.

In Colorado, Bartlett is coaching , including city, county and state health plans, that have come together to negotiate with hospitals. The group recently notched its first win, signing one hospital to a Medicare-benchmarked contract.

In Indiana, Bartlett is advising the , a coalition that insurer Anthem to renegotiate its contract with a notoriously expensive health system.

Bartlett is even shaping legislation, including recent failed attempts in the to more broadly control hospital prices and in the to increase transparency.

‘A Hard, Hard Thing to Tackle’

Bartlett has learned over the past five years just how difficult her model is to export. “It’s a hard, hard thing to tackle,” she said.

Opposition from hospitals is often fierce. In Montana, the deal Bartlett negotiated has actually boosted some hospitals’ bottom lines, but the Montana Hospital Association still criticizes it. MHA President Rich Rasmussen faults the contract for focusing on prices and largely neglecting issues of quality and access. “It doesn’t connect all the dots,” he said. Rasmussen also argued Medicare rates are an “inadequate” starting point for negotiations because they fall short of covering the full cost of care.

That opposition pales in comparison to what Bartlett has seen crisscrossing the country. “What I faced in Montana was nothing like North Carolina faced,” she said, her eyes widening as she described the sheer of the “mega systems” she encountered while advising North Carolina officials.

North Carolina’s plan to pay hospitals roughly twice Medicare rates in 2019 after just five hospitals agreed to the deal and several giant health systems refused to budge.

Bartlett understands that, as a result of , more states face hospital landscapes like North Carolina’s, with its , than Montana’s, with its more than 40 rural hospitals. And the insurance industry nationwide also is , leaving employers with fewer alternatives.

Saying No to Employees

For employers to have any chance at the negotiating table, Bartlett said, they must be willing to make tough calls. In practice, that might mean dropping a hospital that delivered an employee’s twins or a surgeon who cured a CEO’s cancer. “That’s pretty damn hard,” she acknowledged.

“Employers don’t want to disrupt their employees’ care,” said Elizabeth Mitchell, CEO of , which represents Fortune 500 companies like Walmart and Microsoft. “It takes a lot of fortitude to carve a marquee-brand hospital out of a network.”

A 2020 KFF found only 4% of employers had dropped a hospital from a network in order to cut costs. (KHN is an editorially independent program of KFF.)

Bartlett is quick to remind cold-footed employers that continuing to contract with expensive hospitals and doctors has a price, too. “You’re going to disrupt members when they get less and less benefits and pay more and more,” she said. High health care costs also eat up wage increases in the private sector and school funding in the public sector.

Will Covid-19 Be a Catalyst?

Bartlett’s work has hit a crossroads during the pandemic. It is harder to criticize hospitals and their business practices as they play such a vital role. Meanwhile, employers and workers are hurting financially.

“Many large employers are facing economic pressures they frankly haven’t had for a while. They’re laying off tens of thousands of employees,” said Mitchell. “There’s a new sensitivity to costs.”

Bartlett sees an opportunity and is hustling to help employers meet it. She has teamed up with researchers at Rice University on a NASHP project called the Hospital Cost Tool.

“It breaks open this black box and lets you ask where these dollars are going and why,” said Riley of NASHP. The tool aims to automate the kind of forensic accounting of hospitals’ finances that Bartlett had been doing on a one-off basis.

‘You’re Not Going to Be Liked’

There’s one final test Bartlett has tried to prepare employers for — one for which numbers won’t help. It’s the personal toll that comes with challenging the status quo.

While working for the state health plan and before her work delivered results, Bartlett lost close friends, was cut out of meetings and even discovered her co-workers had created a Facebook group to criticize her. “You’re not going to be liked. You’re going to be ridiculed.”

She reminds employers they have a moral and fiscal duty.

“The reality is this is hard work, and it became harder than I ever anticipated,” said Bartlett. “But employers have been given this money, by the taxpayer, by the member, for these benefits. They are responsible for every penny spent. You can’t turn your back on that.”

In Montana, the premiums and copays state workers pay have not increased a single cent since Bartlett and colleagues renegotiated with the hospitals. Over that same time, the average premium paid by American families with employer-based insurance .

Dan Gorenstein is the creator and host of the podcast and Leslie Walker is a senior producer on the show. Their Feb. 18 episode profiles employers’ efforts to purchase health care in new ways.

ºÚÁϳԹÏÍø 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 .

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Researchers tested whether pairing frequently hospitalized patients in Camden, New Jersey, with nurses and social workers could stop that costly cycle of readmissions. The study found no effect: Patients receiving extra support were just as likely to return to the hospital within 180 days as those not receiving that help.

The results are a blow to , the organization he founded nearly 20 years ago.

“It’s my life’s work. So, of course, you’re upset and sad,” said Brenner, who now does similar work with health insurance giant UnitedHealthcare.

The model of care, pioneered in part by Brenner and profiled in a widely read 2011 article in The New Yorker, has inspired dozens of similar projects across the country and attracted millions in philanthropic funding.

“This is the messy thing about science,” said Brenner, who won a MacArthur Foundation “Genius Grant” for his efforts. “Sometimes things work the way you want them to do work and sometimes they don’t.”

The Hope

Many hospital and insurance executives have pinned their hopes on this work because it promised to solve a common problem: when patients lives are so complicated by social factors like poverty and addiction that their manageable medical conditions, like diabetes and asthma, lead to expensive, recurring hospital stays.

Writer and physician Atul Gawande introduced Brenner as a brash visionary crusading on behalf of the “worst-of-the-worst patients” in the New Yorker piece, .” (Gawande, who now , a joint venture of Amazon, Berkshire Hathaway and JPMorgan Chase, declined to be interviewed for this article.)

Brenner’s prescription: Pair these people with front-line care workers who would shepherd them to the social and medical services they needed. Early evidence was promising, the anecdotes inspiring. Brenner boiled the model’s potential down to four words and two tantalizing goals: better care, lower costs.

As word spread, breathless headlines popped up like “” and “”

“Lots of organizations make claims that their programs work and they’ve never been rigorously tested,” Brenner said.

Instead, Brenner took the unusual step of inviting the scrutiny of respected researchers.

In 2014, Massachusetts Institute of Technology economist Amy Finkelstein began a randomized controlled trial, the same rigorous method used to evaluate new drugs. Over four years, the coalition enrolled 800 patients, all who had been recently hospitalized and struggled with social problems. Half received the usual care patients get when leaving the hospital. The other half got about 90 days of intensive social and medical assistance from the coalition.

And the result: The 400 patients who received the intensive help were just as likely to return to the hospital as the patients who didn’t. In both groups, nearly two-thirds of people were readmitted within 180 days.

So why did the coalition fail? Why did the savings touted in their early data, which Gawande had declared “revolutionary” in The New Yorker nearly a decade ago, disappear when put to this rigorous test?

‘My Daily Routine’

Larry Moore, who has hypertension, alcohol addiction, chronic seizures and difficulty walking, was one of the first people to enroll in the coalition’s trial.

Moore’s experience serves as a road map for understanding why the coalition missed its mark.

His first months were promising: prescriptions filled, medical appointments attended, Social Security benefits claim in process. The 47-year-old even started to trust the team with the details of his deep-seated addiction, confiding how he would consume mouthwash, vanilla extract and even hand sanitizer at times.

“You couldn’t keep anything with alcohol in it” around him, Moore recalled. “That’s addiction.”

But all the progress suddenly stopped when Moore seemed to disappear from the coalition’s radar.

“We didn’t see Mr. Moore after November,” said nurse Jeneen Skinner. “We went to the house. We sent text messages. We [made] phone calls.”

The coalition has learned that for people living in poverty and with poor health, a small hiccup — in Moore’s case, a missed rent payment — can spiral into a major setback.

Moore spent the next 2½ years mostly homeless, completely out of touch with the coalition.

“I was going from place to place. I sleep on a bench or a rock until the next day when the liquor store opens,” remembered Moore. “That was my daily routine.”

Seventy emergency room visits and six hospital admissions later, Skinner reconnected with Moore.

He told her the one thing that would keep him out of the hospital: housing.

The ‘Camden Coalition’

Too many times, during the trial, people ended up back in the hospital despite the intervention. But the coalition is convinced it didn’t fail as much as the larger social safety net did.

“The bottom line is, we built a brilliant intervention to navigate people to nowhere,” said Brenner.

Coalition staff and their patients usually knew what was needed — evidence-based addiction treatment, housing, mental health services — but resources were often in short supply.

Over the past three years, the coalition set out to fill in those gaps, undergoing a kind of metamorphosis.

“We think of ourselves now as the Camden Coalition” steering away from the “health care providers” part of the name,Ìýsaid Kathleen Noonan, who succeeded Brenner as head of the organization.

It has forged partnerships with jails, lawyers and legislators, and started its own housing program. Many of these efforts began as the clinical trial was ongoing — a sign the coalition had seen the writing on the wall.

‘I Kid You Not’

“I would have never imagined this,” said Moore, sweeping his arm around his one-bedroom apartment.

A green houseplant sits in the sunshine. A fluorescent-colored stuffed animal decorates the bed.

“When I first moved in here,” Moore explained, “it took me about a month to even sleep in my bed. I slept on a couch.”

Housing made it easier to face his other problem, choosing to try the drug naltrexone, a long-acting injection to treat alcohol addiction.

Moore is nearly two years sober today. He meets with a coalition support group on Wednesdays. He’s becoming a deacon at his church. In the 22 months he has lived in the apartment, Moore’s trips to the hospital have plummeted: just one admission and one ER visit.

“I kid you not, when I saw Mr. Moore probably a month ago, I was standing next to him and did not recognize him,” said nurse Skinner. “He looked at me, and said, ‘Jeneen, it’s me. And I was like, ‘My God, you look amazing!’”

Larry Moore’s story is just that: one story.

Yet it represents a larger trend. Insurers — including UnitedHealthcare under Brenner’s direction — hospitals and many state Medicaid agencies have begun spending millions to meet patients’ social needs.

The new study, though, backs up the skepticism of other researchers that, when it comes to saving money at least, these approaches don’t work well. For one, programs are expensive and hard to scale. The coalition’s housing effort currently serves only 50 people and costs about $14,000 per person per year. Secondly, the data is lacking, cautioned Boston University economist Austin Frakt. “Despite what people would like to believe, there’s not a lot of evidence you can reduce health spending by spending more in other areas.”

Finkelstein said that as health care companies move further beyond the four walls of a hospital, the need for rigorous evaluation grows. “I think a lot of well-intentioned people in health care can’t handle the truth,” she said. “They’re trying to do good, but they don’t have the courage to say, ‘Let’s do a gut check on ourselves.’”

Dan Gorenstein is the creator and co-host of podcast and Leslie Walker is a producer on the show, which features the study on the Camden Coalition in episode 7.

ºÚÁϳԹÏÍø 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 .

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Ìý“Querido y honorable juez, le escribo porque amo a mi madre. Mi madre es muy importante para mí. No sé qué haría sin ella. Aunque mi madre tiene miedo, nunca se da por vencida”.

Este es el comienzo de una declaración escrita por una niña de 13 años al Departamento de Seguridad Nacional. El objetivo: que su madre tenga la cobertura de salud que necesitaría para ingresar a un ensayo clínico.

Hace dos años, la madre de la niña fue diagnosticada con cáncer de estómago avanzado. Sin documentos y sin seguro médico, recibió tratamiento gratuito en el Hospital Bellevue en Manhattan a través del programa de emergencia de Medicaid de Nueva York, que sin duda prolongó su vida.

Luego, el otoño pasado, su médico la identificó como para un medicamento que ha resultado muy efectivo para algunos cánceres de pulmón. ¿Funcionaría para su enfermedad? Los investigadores estaban ansiosos por pacientes como J. para ayudarlos a responder esa pregunta. (Kaiser Health News identifica al paciente solo por su primera inicial, debido a la amenaza de deportación).

“Mire estos ensayos clínicos, hay algunos pacientes que simplemente se olvidan de morir”, dijo el doctor Steve Lee, oncólogo de J. “Ella podría ser una de estas sobrevivientes a largo plazo”.

Sin embargo, formar parte de un ensayo clínico no sería un proceso simple. J. emigró de China a los Estados Unidos hace 18 años con una visa que expiró hace mucho tiempo. La visa de su esposo también venció hace años. El matrimonio de Queens tiene tres hijos que son ciudadanos, de 13, 12 y 4 años.

Para ser aceptada en el ensayo, J. necesitaba la cobertura más completa que ofrece el programa de Medicaid tradicional. Y conseguir eso significaba tener que presentarse ante Seguridad Nacional (Homeland security) y pedirle a la agencia que no ejecutara la orden de deportación que pesa sobre ella. Declararse ante la agencia implicaría que los oficiales tuvieran su dirección y los nombres de todas las personas de su familia.

“Antes de enfermarse, el estatus migratorio era claramente importante”, dijo J. a través de un traductor. “Ahora, el estatus migratorio y mi capacidad para continuar viviendo están entrelazados, porque solo puedo obtener un buen tratamiento si obtengo un estatus legal”.

La familia enfrentó este dilema bajo la creciente amenaza de deportaciones del presidente Donald Trump. Las cifras federales muestran que las aumentaron un 40% en los primeros cuatro meses de 2017 en comparación con el mismo período de 2016. La administración también está considerando un cambio que penalizaría a los inmigrantes legales si utilizan beneficios públicos como Medicaid.

Hasta el momento en el que se planteó la posibilidad del ensayo clínico, J. recibió una atención muy similar a la que podría tener cualquier persona con seguro privado. Y ahí es en donde comienza a pesar en donde se vive. Cada estado cubre la atención de inmigrantes indocumentados a través de su programa de emergencia de Medicaid de manera diferente, y Nueva York tiene uno de los más generosos del país.

“En algunos estados, si un paciente necesita, por ejemplo, diálisis para salvar su vida, lo ponen de inmediato bajo Medicaid de emergencia”, dijo Steven Wallace, profesor de salud de la UCLA, quien ha estudiado la atención médica para inmigrantes en el país. “En otros, como Georgia, no lo colocarán en Medicaid de emergencia hasta que usted esté en shock diabético”.

Para cuando J. se enteró del ensayo clínico, ya se había sometido a quimioterapia y a dos cirugías para que le extirparan los ovarios y parte del estómago. Aunque el programa de emergencia de Medicaid de Nueva York es uno de los más completos, aún así no cubre los costos asociados con los ensayos de medicamentos, incluso en situaciones difíciles.

Para contexto, algunas estimaciones sugieren que un año de cuesta alrededor de $100,000. Los costos varían según el hospital, y Medicaid les paga menos a los hospitales.

Bellevue no proporcionó un recuento de las facturas médicas de J. La limitada investigación disponible sobre la atención para los inmigrantes indocumentados muy enfermos muestra que el tratamiento puede variar incluso por condado, dentro de un mismo estado. Wallace dijo que, la mayoría de las veces, cuando se ven acorralados ​​por una enfermedad que amenaza la vida, como el cáncer de estómago, las mujeres y hombres indocumentados se pierden las pruebas, procedimientos y medicamentos que podrían extender sus vidas.

Al vivir en Nueva York, J. recibió una buena atención. Pero, ¿la posibilidad de un ensayo clínico para probar una nueva droga valía el riesgo que su esposo fuera deportado?

Durante la mayor parte de la entrevista, J. habló en mandarín a través de un traductor. Pero cuando se le preguntó si tenía más miedo a morir o a ser deportada, respondió directamente, en inglés.

“Sí, tengo miedo a morir, más que ser deportada”, dijo J. “Por supuesto. Porque mi familia me necesita. Mis hijos me necesitan”.

Domna Antoniadis, abogada principal del New York Legal Assistance Group, tiene su oficina al otro lado del pasillo del doctor Lee, en Bellevue. Su trabajo es ayudar a los pacientes a superar los obstáculos burocráticos para obtener cobertura médica, y dijo que J. tenía un caso convincente.

“Ella ha estado aquí por casi 20 años. Tiene tres jóvenes ciudadanos estadounidenses. Nunca ha sido arrestada; no tiene antecedentes penales. Ha trabajado. Y ahora mismo, tiene una forma muy agresiva de cáncer”, dijo Antoniadis. “Ella está diciendo, ‘Aquí estoy. Esto es lo que está pasando conmigo, pero por favor no me deportes'”.

El esposo de J. dijo que su esposa hizo todo lo que pudo para combatir su enfermedad, incluso cambiar su dieta, hacer más ejercicio y seguir las órdenes del médico. La decisión sobre el ensayo con la nueva droga fue clara, dijo.

“La vida es más importante que cualquier otra cosa. Tienes que enfrentar el cáncer”, dijo, hablando a través de un traductor. “Tienes que enfrentar las presiones. Solo tienes que hacer lo que sea necesario para seguir viviendo”.

Presentó la solicitud, y Antoniadis aconsejó a la familia que sea cautelosa. Les dijo que si los agentes federales se presentaban en la casa, antes de abrir la puerta, la familia debería asegurarse que los funcionarios tuvieran una orden judicial. Su abogado le dio a J. una guía en mandarín, que describía sus derechos.

Durante el otoño, el esposo de J. dijo que la familia se sentía vulnerable.

“Vemos las noticias”, contó. “Vemos las cosas que dice Donald Trump, y vemos que ha sido duro con la inmigración y ha intentado hacer muchos cambios. Entonces, claro, estamos más preocupados”.

Mientras esperaban noticias de Seguridad Nacional, una especie de miedo acumulado se apoderó de la familia. J. hablaba menos. Su hija de 13 años se hizo cargo de lavar los platos de la cena. Su hijo de 12 años ponía la mesa y jugaba menos videojuegos, tratando de hacer feliz a su madre. Su hermana menor, de 4 años, preguntaba por qué todo era diferente.

Antes que Seguridad Nacional Ìýpudiera responder, J. recibió la noticia que había sido aceptada en el programa de Medicaid tradicional de Nueva York. La solicitud para retrasar la deportación fue suficiente para que el estado aceptara a J. en el programa. Tuvo su primer tratamiento dentro del ensayo clínico en diciembre pasado. Trató de saborear la vida.

“Ahora no soy tan estricta con mis hijos. De alguna manera solo los dejo ser niños. Antes, les daba tarea adicional además de lo asignado en la escuela. Ahora, solo quiero que sean felices”, dijo. “Entre mi esposo y yo, nos importa mucho menos el dinero. Antes, solo salíamos a cenar una vez al mes. Ahora atesoramos cada momento que tenemos”.

Pero casi tan pronto como J. entró en el ensayo clínico, tuvo que salir. Su oncólogo, Lee, explicó que “tuvo un rápido crecimiento de su cáncer” y no pudo permanecer en el ensayo. A principios de enero, J. comenzó cuidados paliativos. Su esposo dijo que fue un mes muy difícil para ella, y el 6 de febrero, J. murió.

Cuando se le preguntó a Lee, si el esfuerzo por ponerla en un ensayo clínico había valido la pena, por el estrés que pasó la familia, el doctor dijo: “Creo que, en retrospectiva, es más fácil decir que ingresar al ensayo médico fue una pérdida de tiempo. Pero la alternativa para un cáncer como éste es que invariablemente moriría. Así que creo que valió la pena arriesgar mucho por tener la oportunidad de sobrevivir a largo plazo “.

Lee agregó que, al menos por un tiempo, el ensayo clínico le dijo a J., y a su familia, esperanza.

Dan Gorenstein es periodista de atención médica de Marketplace. Esta historia fue producida en asociación con WHYY’s The Pulse y Kaiser Health News.

La cobertura de KHN de temas del final de la vida y de enfermedades graves es apoyada por .

ºÚÁϳԹÏÍø 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 .

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This story can be republished for free (details).

This is the beginning of a plea written by a 13-year-old girl to the Department of Homeland Security. The goal: to get her mother the insurance coverage she would need to enter a clinical trial.

Two years ago, the girl’s mother learned she had advanced stomach cancer. Undocumented and uninsured, the mother received free treatment at Bellevue Hospital in Manhattan through New York’s emergency Medicaid program, which undoubtedly prolonged her life.

Then, last fall, her doctor identified her as a that has been remarkably effective for some lung cancers. Would it work for her disease? The researchers were eager for patients like J. to help them answer that question. (Kaiser Health News is identifying the patient by her first initial only, because of the threat of deportation.)

“You look at these clinical trials — there are some patients who just forget to die,” said Dr. Steve Lee, J.’s oncologist. “She could be one of these long-term survivors.”

But it would not be a simple process for J. to enter a clinical trial. She emigrated from China 18 years ago on a visa that had long since expired. Her husband’s visa also expired years ago. The Queens couple have three children who are U.S. citizens, ages 13, 12 and 4.

To be accepted into the trial, J. needed the more complete coverage traditional Medicaid offers. And to get that meant declaring herself to Homeland Security and asking the agency not to act on its standing deportation order against her. That would call attention to herself and her status — and provide the agency with her address and the names of everyone she lived with.

“Before getting sick, legal status was clearly important,” J. said through a translator. “Now, both legal immigration status and my ability to continue to live are intertwined, because I can only get good treatment if I obtain legal status.”

The family faced this dilemma under President Donald Trump’s growing threat of deportations. Federal figures of undocumented people living in the U.S. were up 40 percent in the first four months of 2017 compared with the same period in 2016. The administration also is considering a change that would penalize legal immigrants if they use public benefits like Medicaid.

Up to the point of the clinical trial, J. got care very similar to what anyone with private insurance might get. And that is a function of residence. Each state covers care for undocumented immigrants through its emergency Medicaid program differently, and New York has one of the most generous programs in the country.

“In some states, they say giving you dialysis is keeping you from dying. We are going to put you on emergency Medicaid,” said Steven Wallace, a health professor at UCLA, who has studied immigrant health care in the U.S. “In other states — Georgia comes to mind — they will not put you on emergency Medicaid until you are in diabetic shock.”

By the time J. learned of the drug trial, she’d had chemotherapy and separate surgeries to have her ovaries and part of her stomach removed. As comprehensive as New York’s emergency Medicaid program is, it does not cover the costs associated with drug trials, even in dire situations.

For context, some estimates suggest that for one year costs about $100,000. Costs vary by hospital, and Medicaid pays hospitals less.

Bellevue did not provide a tally of J.’s medical bills. The limited research available on care for very sick, undocumented immigrants shows that the treatment can vary even by county within a state. More often than not, Wallace said, when beset by a life-threatening illness such as stomach cancer, undocumented women and men miss out on the tests, procedures and drugs that could extend their lives.

By virtue of living in New York, J. did receive good care. But was the chance at the drug trial worth the risk of her or her husband being deported?

For most of an interview with a reporter, J. spoke Mandarin through a translator because of her limited English skills. But when asked whether she was more afraid to die or be deported, she answered directly, in English.

“Yeah, I [am] afraid to die, more than be deported,” J. said. “Of course. Because my family need[s] me. My children need me.”

Domna Antoniadis, a senior staff attorney at the New York Legal Assistance Group, works just across the hall from Dr. Lee at Bellevue. Her job is to help patients jump through bureaucratic hoops to get health coverage, and she said J. had a compelling case.

“She’s been here for almost 20 years. She has three young U.S. citizen children. She’s never been arrested; no criminal history. She’s worked. And right now, she has a very aggressive form of cancer,” Antoniadis said. “She’s saying, ‘Here I am. This is what’s going on with me, but please don’t remove me.’”

J.’s husband said his wife did everything she could to battle her disease, including changing her diet, walking up hills for exercise and following doctor’s orders. The decision on the drug trial was clear, he said.

“Life is more important than anything else. You have to face the cancer,” he said, speaking through a translator. “You have to face the pressures. You just have to do whatever it takes so that you can keep on living.”

J. submitted the application, and Antoniadis advised the family to be cautious. She told them if federal agents show up at the house, before opening the door the family should make sure the officials have a warrant. Her attorney gave J. a guide outlining her rights in Mandarin.

Over the fall, J.’s husband said the family felt vulnerable.

“We watch the news,” he said. “We see the things Donald Trump says, and we see that he’s been tough on immigration and has tried to make a lot of changes. So, for sure, we’re more worried.”

As they waited to hear from Homeland Security, a kind of balled-up fear settled over the family. J. talked less. Their 13-year-old daughter took over doing the dinner dishes. Their 12-year-old son set the table and played fewer video games, trying to make his mom happy. Their kid sister, age 4, asked why everything was different.

Before Homeland Security could respond, J. got word from New York’s traditional Medicaid program that she was accepted. The application to delay deportation was enough for the state to open the program to J. She had her first drug trial treatment last December. She tried to savor life.

“Now I’m not nearly as strict with my kids. I sort of just let them be kids. Before, I’d give them extra homework on top of what’s assigned at school. Now, I just want them to be happy,” she said. “Between my husband and me, we care a lot less about money. Before, we only go out to dinner once a month. Now we treasure every moment we have.”

Almost as soon as J. was in the drug trial, she was out. Her oncologist, Lee, said J. “had rapid growth of her cancer” and couldn’t remain in the trial. By early January, J. had started hospice. Her husband said it was a very difficult month for her, and on Feb. 6, J. died.

Asked if he thought the trial was worth all the risk and stress it caused the family, Lee said: “I think it’s easier to say that going on the drug trial was a waste of time, in retrospect. But the alternative for cancer like this is that she would invariably die. So I think that the opportunity to give her a shot at long-term survival was one worth putting a lot on the line for.”

Lee said what the trial really gave J., and her family — for a time at least — was hope.

Dan Gorenstein is the health care reporter for Marketplace. This story was produced in partnership with WHYY’s The Pulse and Kaiser Health News.

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