“Es fácil cruzar la frontera”, reflexionó Fenner.

Esta idea había estado en la mente de Fenner durante un tiempo. A su hijo le diagnosticaron diabetes tipo 1 hace nueve años, lo que significa que necesita inyecciones diarias de insulina para vivir. El precio de la insulina se ha disparado desde su diagnóstico. El año pasado, le dijeron a Fenner que debía pagar $3,700 por un suministro de insulina de tres meses.

Ese mismo suministro costaría sólo unos $600 en México.

Así que, cuando reservó su viaje a Los Ángeles, Fenner dijo: “He decidido que necesitamos actualizar nuestros pasaportes para ir a comprar más insulina”.

Fenner no es la única que piensa así. El gobierno de los Estados Unidos en California cruzan a México anualmente para recibir atención médica, incluyendo la compra de medicamentos recetados. Y entre 150,000 y 320,000 estadounidenses dicen que la atención médica es una de las razones por las que viajan al extranjero cada año. El ahorro es la razón que se cita con más frecuencia.

La compra de medicamentos como derecho

El año pasado, en Utah, el Plan de Salud para Empleados Públicos (PEHP, por sus siglas en inglés) llevó esta idea a un nuevo nivel con su . Para ciertos miembros del PEHP que usan costosos medicamentos recetados, incluyendo el popular medicamento para la artritis Humira, la aseguradora paga el viaje del paciente y un acompañante a San Diego, y luego los lleva a un hospital en Tijuana, México, para recoger un suministro de medicamentos para 90 días.

“El costo promedio de un medicamento elegible en los Estados Unidos supera los $4,500 por mes, en México es del 40% al 60% menos”, explicó Travis Tolley, director de servicios clínicos del PEHP, al anunciar el programa en octubre.

El programa fue parte de un proyecto de ley conocido como (“Derecho a Comprar”) promovido en 2018 por Norm Thurston, economista experto en atención de salud y representante del estado de Utah. Thurston dijo que todavía no hay suficientes datos para saber cuánto se ahorra con el programa. Los primeros pacientes viajaron a Tijuana en diciembre.

Sin embargo, Thurston indicó que, en los próximos seis meses, los ahorros podrían ser de “alrededor de un millón de dólares”.

Pero, ¿es legal? Esta es una de las preguntas que surgen sobre estos viajes al extranjero para comprar medicamentos recetados.

Según la Administración de Alimentos y Medicamentos (FDA), “en la mayoría de los casos, es ilegal que los individuos importen drogas a los Estados Unidos para uso personal”. Sin embargo, el sitio de internet de la FDA proporciona sobre cuándo se puede permitir. Y el sitio de la Oficina de Aduanas y Protección Fronteriza de los Estados Unidos tiene una sobre cómo viajar con medicamentos en su guía “Know Before You Go”.

Aunque la guía puede no responder todas las dudas, según Thurston, este tipo de compra para uso personal es una práctica ampliamente establecida.

“Al hablar con las personas sobre el tema vemos que nadie ha tenido problemas legales por hacerlo. Y sucede todos los días en todos los cruces fronterizos del país”, dijo Thurston.

“El entendimiento general es que se puede traer un suministro de hasta 90 días de una receta desde el extranjero, aunque técnicamente viole la ley”, explicó , profesor de derecho de la Southern Methodist University.

“Creo que la FDA no quiere preocuparse por las personas que van al extranjero y traen pequeñas cantidades de recetas que duran unos meses”, señaló Cortez, y agregó: “Eso no significa que la FDA no pueda cambiar de opinión y comenzar a tomar medidas enérgicas”.

Otra preocupación que surge al hablar del turismo médico es la calidad de ese medicamento importado. Según la FDA, la razón por la que es ilegal importar medicinas es porque la agencia “no puede garantizar su seguridad y eficacia”. En 2017, la Organización Mundial de la Salud (OMS) que el 10% de los medicamentos en los países en desarrollo eran de mala calidad o estaban falsificados.

Para abordar ese problema, el programa de Utah envía a sus pacientes sólo a un hospital mexicano designado y acreditado. Los pacientes individuales como Michelle Fenner deben tomar sus propias precauciones.

“Te pones un poco nerviosa. Hay que comprar en una farmacia con buena reputación”, comentó Fenner. Para conseguir recomendaciones de farmacias, ha estado consultando con amigos y conocidos que han comprado insulina en México. Y ahora llama a esas farmacias para asegurarse que tienen el tipo de insulina que quiere comprar. Cuando se acerque la maratón del 24 de marzo, piensa llamar para hacer su pedido.

Fenner, que divide su tiempo entre Dallas, Texas, y Arvada, Colorado, dijo que la cantidad que espera ahorrar en insulina podría justificar múltiples viajes a México cada año.

Ahorros globales

Fenner es sólo una de los cada vez más numerosos activistas en internet que discuten sobre el enorme esfuerzo que hacen para poder pagar por la insulina. Lija Greenseid es parte de este grupo. Su hija tiene diabetes tipo 1.

Casi un año después del diagnóstico, Greenseid y su familia estaban visitando Quebec, en Canadá, en julio de 2014. El nivel de azúcar en sangre de su hija comenzó a subir y Greenseid temió que la insulina no le funcionara, así que fue a una farmacia. Sin receta médica y pensando que la vida de su hija podía estar en peligro, Greenseid estaba dispuesta a pagar lo que fuera.

Entonces supo que la caja de insulina que normalmente cuesta $700 en los Estados Unidos, sólo costaba unos $65 en Canadá.

“En ese momento empecé a llorar. No podía creer lo barato que era y lo fácil que era comprarla”, dijo Greenseid.

“Le dije al farmacéutico: ‘No se imagina lo difícil que es conseguir la insulina en los Estados Unidos. Es mucho más cara’. Y él me dijo:’¿Por qué hay que hacerlo difícil? Se necesita insulina para vivir”.

Cuanto más viajaba Greenseid con su familia, más se daban cuenta de lo barata que era la insulina en todas partes excepto en los Estados Unidos. En Nuremberg, Alemania, pudo conseguir esa caja de insulina de $700 por $73. La misma caja costaba $57 en Tel Aviv, Israel, $51 en Grecia, $61 en Roma y $40 en Taiwán.

“En los Estados Unidos nos acostumbramos a pensar que la atención de salud tiene que ser difícil y costosa, y la gente no piensa que podría ser mucho más fácil y menos costosa en otros lugares”, señaló Greenseid. “De hecho, ese es el caso en la mayoría de los países”.

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“It’s so easy to just go across the border,” mused Fenner.

This idea had been in the back of Fenner’s mind for a while. Her son was diagnosed with Type 1 diabetes nine years ago, meaning he needs daily injections of insulin to live. The list price of the modern generation of insulin has skyrocketed since his diagnosis. On one trip to the pharmacy last year, Fenner was told that a three-month supply of insulin would cost her $3,700.

That same supply would cost only about $600 in Mexico.

So, when she booked her trip to Los Angeles, Fenner said, “I decided we need to update our passports and go and get more insulin.”

Fenner isÌýnot the only oneÌýthinking like this. The U.S. governmentÌýÌýthat close to 1 million people in California alone cross to Mexico annually for health care, including to buy prescription drugs. And between 150,000 and 320,000 Americans list health care as a reason for traveling abroad each year. Cost savings is the most commonly cited reason.

‘Right To Shop’ Legislation

In Utah last year, the Public Employee Health Plan took this idea to a new level with its voluntaryÌý. For certain PEHP members who useÌýÌýcostly prescription medications — including the popular arthritis drug Humira — the insurer will foot the bill to fly the patient and a companion to San Diego, then drive them to a hospital in Tijuana, Mexico, to pick up a 90-day supply of medicine.

“The average cost of an eligible drug in the US is over $4,500 per month and is 40-60% less in Mexico,” PEHP clinical services director Travis Tolley said in an announcement of the program in October.

The program was part of a “Ìýbill championed by health care economist and Utah state representative Norm Thurston in 2018. Thurston said there is not yet enough data to know how much in savings the program provides; the first patients traveled to Tijuana in December.

But, Thurston said, he expects that in the next six months, savings will likely be “in the ballpark of $1 million.”

There are some questions about traveling abroad to buy prescription drugs, however. The first: Is it legal?

According to the Food and Drug Administration, “in most circumstances, it is illegal for individuals to import drugs into the United States for personal use.” But the agency’s website doesÌýÌýabout when it could be allowed. And the U.S. Customs and Border Protection’s website has aÌýÌýon traveling with medications in its “Know Before You Go” guide.

While the guidelines may still raise questions, Thurston said, this sort of purchase for personal useÌýis a widely established practice.

“When we talked to people about this, there has never been a single person who has been prosecuted for doing it. And it happens every day at every border crossing all over the country,” Thurston said.

“The general understanding is you can bring up to a 90-day supply of a prescription from overseas, even though it’s a technical violation,” saidÌý, a law professor at Southern Methodist University.

“My sense is the FDA does not want to worry about individuals going overseas and bringing back small amounts of prescriptions that last a few months,” Cortez said, adding, “That doesn’t mean the FDA couldn’t change its mind at any point and start cracking down.”

A second major concern that comes up in any discussion of medical tourism is about the quality of that imported medicine. According to the FDA, the reason it’s mostly illegal to import drugs is because the agency “cannot ensure the safety and effectiveness” of those drugs. In 2017, the World Health OrganizationÌýÌýthat 10 percent of drugs in developing countries were either substandard or falsified.

To address that problem, the Utah program sends its patients only to a designated, accredited Mexican hospital. Individual patients like Michelle Fenner are left to take their own precautions.

“You get a little nervous. You want to make sure that you have a reputable pharmacy,” Fenner said. To get pharmacy recommendations, she has been consulting with friends and acquaintances who have purchased insulin in Mexico. She’s calling those pharmacies now to make sure they have the type of insulin she wants to buy. When the March 24 marathon gets closer, she’s planning to call ahead with her order.

Fenner, who splits her time between Dallas and Arvada, Colo., said the amount she’s expecting to save on insulin could warrant multiple trips to Mexico every year.

Global Savings

Fenner is just one of the growing number of activists online who are discussing the great lengths they go to — sometimes literally — to afford insulin. Lija Greenseid is another. Her daughter has Type 1 diabetes.

Almost one year to the day after her daughter’s diagnosis, Greenseid and her family were visiting Quebec City, Canada, in July 2014. Her daughter’s blood sugar started spiking and Greenseid feared her insulin might have gone bad, so she went to a pharmacy. With no prescription and fearing that her daughter’s life was on the line, Greenseid was prepared to pay a fortune.

Instead the box of insulin pens that normally costs $700 in the U.S. was only around $65 or so.

“At that point I started tearing up. I could not believe how inexpensive it was and how easy it was,” Greenseid said.

“I said to [the pharmacist], ‘Do you have any idea what it’s like to get insulin in the United States? It’s just so much more expensive.’ And he turned to me and said, ‘Why would we want to make it difficult? You need insulin to live.'”

The more Greenseid traveled with her family, the more they realized how inexpensive insulin was everywhere except in the United States. In Nuremberg, Germany, she could get that $700 box of insulin pens for $73. The same box was $57 in Tel Aviv, Israel, $51 in Greece, $61 in Rome and $40 in Taiwan.

“We get so accustomed in the United States to thinking that health care has to be difficult and so expensive that people don’t even consider the fact that it could be so much easier and less expensive in other places,” Greenseid said. “In fact, that is the case in most countries.”

This story is part of a partnership that includes , and Kaiser Health News.

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Nicole Smith-Holt perdió a su hijo por cetoacidosis diabética, tres días antes de recibir su salario, porque no pudo pagar por la insulina.

“No debería haber sucedido”, dijo Smith-Holt, mirando el certificado de defunción de su hijo en la mesa de su comedor en Richfield, Minnesota. “Esta muerte por cetoacidosis diabética nunca debería haber sucedido”.

El precio de la insulina en los Estados Unidos . Eso pone a la hormona que salva vidas fuera del alcance de algunas personas con diabetes, como el hijo de Smith-Holt, Alec Raeshawn Smith. Y ha dejado a otros luchando, en busca de soluciones para pagar lo único que necesitan para mantenerse vivos. Este reportero es una de esas personas que tienen que pelear por su insulina.

No hay tiempo suficiente

La mayoría de los organismos crean insulina, una hormona que regula la cantidad de azúcar en sangre. Las cerca de 1.25 millones de personas con en el país tienen que comprar insulina en una farmacia porque sus páncreas dejaron de producirla.

Mi primer vial de insulina costó $24.56 en 2011, después que el seguro pagara su parte. Siete años después, me cuesta más de $80. Eso no es nada comparado con lo que Alec enfrentó cuando cumplió 26 años y fue removido del plan de salud de su madre.

Smith-Holt dijo que ella y Alec comenzaron a revisar sus opciones en febrero de 2017, tres meses antes de su cumpleaños, el 20 de mayo. El farmacéutico de Alec le dijo que, sin seguro, sus suministros para controlar la diabetes costarían $1,300 al mes, la mayor parte para la insulina. Sus opciones con el seguro no eran mucho mejores.

El salario anual de Alec como gerente de un restaurante era de aproximadamente $35,000. Demasiado alto para calificar para Medicaid, y, según Smith-Holt, demasiado alto para calificar para subsidios significativos en el mercado de seguros de Minnesota establecido por la Ley de Cuidado de Salud Asequible (ACA). El plan que encontraron tenía una prima de $450 por mes y un deducible anual de $7,600.

“Al principio no se dio cuenta de lo que era un deducible”, dijo Smith-Holt. Alec pensó que podía buscar un trabajo de medio tiempo para ayudar a cubrir los $450 por mes, contó su madre.

Smith-Holt le explicó a su hijo lo que era un deducible.

“Tienes que pagar los $7,600 de tu bolsillo antes que tu seguro comience a pagar”, recordó haberle explicado. Alec decidió que permanecer sin seguro sería más manejable. Aunque podría haber discutido con su médico otras alternativas para conseguir la insulina, nunca llegó a hacerlo.

Murió menos de un mes después de salir del seguro de su madre. Su familia cree que estaba racionando su insulina, utilizando menos de lo que necesitaba, para tratar de que durara hasta que pudiera comprar más. Murió solo en su apartamento tres días antes de cobrar su salario. La pluma de insulina que usaba para inyectarse estaba vacía.

“Ni siquiera hubo tiempo suficiente para probar realmente si [estar sin seguro] estaba funcionando o no”, dijo Smith-Holt.

Un descubrimiento milagroso

La insulina es un símbolo del problema de los Estados Unidos con el aumento de los costos de los medicamentos recetados.

Antes de principios de la década de 1920, la diabetes tipo 1 era una sentencia de muerte. Luego, investigadores de la Universidad de Toronto, especialmente los doctores Frederick Banting, Charles Best y J.J.R. Macleod, para extraer y purificar insulina que podía usarse para tratar la afección. En 1923, Banting y Macleod fueron galardonados con el por este descubrimiento.

Para los pacientes, fue ni más ni menos que un milagro. La patente del descubrimiento se vendió a la Universidad de Toronto , para que la insulina estuviera disponible para todos los que la necesitaran.

Hoy, sin embargo, el precio de lista para un frasco de insulina es de más de $250. La mayoría de los pacientes usan de dos a cuatro viales por mes (yo personalmente uso dos). Sin seguro u otras formas de asistencia médica, esos precios pueden salirse de control rápidamente, como le ocurrió a Alec.

Dependiendo de a quién le preguntes, obtendrás una respuesta diferente de por qué los precios de la insulina han subido tanto. Algunos culpan a los , gerentes de beneficios farmacéuticos como Express Scripts y CVS Health, por negociar precios más bajos con las compañías farmacéuticas sin transferirles ahorros a los clientes. Otros dicen que las sobre cambios en los precios de la insulina han mantenido fuera del mercado a las versiones genéricas más baratas.

Para Nicole Smith-Holt, así como para un creciente número de activistas en las redes sociales, quienes twittean bajo el hashtag #insulin4all, gran parte de la culpa recae sobre los tres principales fabricantes de insulina: Sanofi de Francia, Novo Nordisk de Dinamarca, y Eli Lilly en los Estados Unidos

Un grupo de pacientes con diabetes de Massachusetts, quienes alegan que los precios están aumentando a expensas de la salud de los pacientes, ante una corte federal de los Estados Unidos.

Eli Lilly and Company no tuvo a nadie disponible para una entrevista para esta historia. Pero un portavoz de la compañía señaló en un correo electrónico que los planes de salud con deducibles altos, como el que encontró Alec, están exponiendo a más pacientes a precios más altos. En agosto, Eli Lilly abrió una a la que los pacientes pueden llamar para pedir ayuda para encontrar insulina con descuento, o incluso gratuita.

Una solución peligrosa

Racionar la insulina, como lo hizo Alec, el hijo de Nicole Smith-Holt, es una solución peligrosa. Aun así, personas con diabetes admiten haberlo hecho. Yo lo he hecho. Gran parte de la historia de Alec me resulta familiar.

Nacimos y crecimos en el Medio Oeste, a solo dos estados de distancia. Ambos fuimos diagnosticados a los 23 años, bastante mayores para desarrollar una condición que suele llamarse “diabetes juvenil”. Incluso usé por un tiempo el mismo tipo de plumas de insulina que Alec usaba cuando murió. Son más caras, pero la administración es mucho más fácil.

“Mi historia no es tan diferente de lo que escuché de otras familias”, dijo recientemente Smith-Holt a de demócratas del Senado en Washington, DC, en una audiencia sobre el alto precio de los medicamentos recetados.

“Los adultos jóvenes abandonan la universidad”, les dijo a los legisladores. “Se casan solo para tener un seguro o no se casan con el amor de sus vidas porque perderán su seguro financiado por el estado”.

Puedo entender eso también. Mi prometida se mudó a otro estado recientemente y pronto me uniré a ella. Hubiera sido un trabajador independiente y no hubiera tenido beneficios de salud, aunque ella si tiene cobertura por su trabajo. Nos casamos, un año antes de la boda real, así también puedo tener seguro.

Esta historia es parte de una asociación que incluye a Side Effects Public Media, NPR y Kaiser Health News.

La cobertura de KHN del desarrollo de medicamentos recetados, los costos y los precios es apoyada en parte por .

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

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Nicole Smith-Holt lost her son to diabetic ketoacidosis, three days before his payday, because he couldn’t afford his insulin.

“It shouldn’t have happened,” Smith-Holt said, looking down at her son’s death certificate on her dining room table in Richfield, Minn. “That cause of death of diabetic ketoacidosis should have never happened.”

The price of insulin in the U.S. has since 2012 alone. That’s put the lifesaving hormone out of reach for some people with diabetes, like Smith-Holt’s son Alec Raeshawn Smith. It has left others scrambling for solutions to afford the one thing they need to live. I’m one of those scrambling.

Not Enough Time

Most people’s bodies create insulin, which regulates the amount of sugar in the blood. The roughly 1.25 million of us in the U.S. withÌýÌýhave to buy insulin at a pharmacy because our pancreases stopped producing it.

My first vial of insulin cost $24.56 in 2011, after insurance. Seven years later, I pay more than $80. That’s nothing compared with what Alec was up against when he turned 26 and aged off his mother’s insurance plan.

Smith-Holt said she and Alec started reviewing his options in February 2017, three months before his birthday on May 20. Alec’s pharmacist told him his diabetes supplies would cost $1,300 a month without insurance — most of that for insulin. His options with insurance weren’t much better.

Alec’s yearly salary as a restaurant manager was about $35,000. Too high to qualify for Medicaid, and, Smith-Holt said, too high to qualify for significant subsidies in Minnesota’s Affordable Care Act insurance marketplace. The plan they found had a $450 premium each month and an annual deductible of $7,600.

“At first he didn’t realize what a deductible was,” Smith-Holt said. She said Alec figured he could pick up a part-time job to help cover the $450 per month.

Then Smith-Holt explained to her son what a deductible was.

“You have to pay the $7,600 out-of-pocket before your insurance is even going to kick in,” she recalled telling him. Alec decided going uninsured would be more manageable. Although there might have been cheaper alternatives for his insulin supply that Alec could have worked out with his doctor, he never made it that far.

He died less than one month after going off of his mother’s insurance. His family thinks he was rationing his insulin — using less than he needed — to try to make it last until he could afford to buy more. He died alone in his apartment three days before payday. The insulin pen he used to give himself shots was empty.

“It’s just not even enough time to really test whether [going without insurance] was working or not,” Smith-Holt said.

A Miracle Discovery

Insulin is an unlikely symbol of America’s problem with rising prescription costs.

Before the early 1920s, Type 1 diabetes was a death sentence for patients. Then researchers at the University of Toronto — notably Dr. Frederick Banting, Charles Best and J.J.R. Macleod —ÌýÌýa method of extracting and purifying insulin that could be used to treat the condition. Banting and Macleod wereÌýÌýfor the discovery in 1923.

For patients, it was nothing short of a miracle. The patent for the discovery was sold to the University of TorontoÌýÌýso that lifesaving insulin would be available to everyone who needed it.

Today, however, the list price for a single vial of insulin is more than $250. Most patients use two to four vials per month (I personally use two). Without insurance or other forms of medical assistance, those prices can get out of hand quickly, as they did for Alec.

Depending on whom you ask, you’ll get a different response for why insulin prices have risen so high. SomeÌýÌý— such as pharmacy benefit managers, like Express Scripts and CVS Health — for negotiating lower prices with pharmaceutical companies without passing savings on to customers. Others sayÌýÌýon incremental changes to insulin have kept cheaper generic versions out of the market.

For Nicole Smith-Holt, as well as a growing number of online activists who tweet under the hashtag #insulin4all, much of the blame should fall on the three main manufacturers of insulin today: Sanofi of France, Novo Nordisk of Denmark and Eli Lilly in the U.S.

The three companies areÌýÌýin U.S. federal court by diabetic patients in Massachusetts who allege the prices are rising at the expense of patients’ health.

Eli Lilly and Company did not make anyone available for an interview for this story. But a company spokesman noted in an email that high-deductible health insurance plans — like the one Alec found — are exposing more patients to higher prices. In August, Eli Lilly opened aÌýÌýthat patients can call for assistance in finding discounted or even free insulin.

A Dangerous Solution

Rationing insulin, as Nicole Smith-Holt’s son Alec did, is a dangerous solution. Still,ÌýÌýpeople with diabetes admit to having done it. I’ve done it. Actually, there’s a lot of Alec’s story that feels familiar to me.

We were both born and raised in the Midwest, just two states apart. We were both diagnosed at age 23 — pretty old to develop a condition that used to be called “juvenile diabetes.” I even used to use the same sort of insulin pens that Alec was using when he died. They’re more expensive, but they make management a lot easier.

“My story is not so different from what I hear from other families,” Smith-Holt recentlyÌýof Senate Democrats in Washington, D.C., in a hearing on the high price of prescription drugs.

“Young adults are dropping out of college,” she told the lawmakers. “They’re getting married just to have insurance, or not getting married to the love of their lives because they’ll lose their state-funded insurance.”

I can relate to that too. My fiancée moved to a different state recently and soon I’ll be joining her. I’ll be freelancing, and won’t have health benefits, though she will, via her job. We got married — one year before our actual wedding — so I can get insured, too.

This story is part of a partnership that includes , and Kaiser Health News. A version of this story appears inÌý podcast.

Â鶹ŮÓÅ Health News' coverage of prescription drug development, costs and pricing is supported in part by the .

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

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Since 2010, at least have closed across the country, and nearly are at risk of closing. These hospitals serve a largely older, poorer and sicker population than most hospitals, making them particularly vulnerable to changes made to Medicaid funding.

“A lot of hospitals like [ours] could get hurt,” says , CEO of Pemiscot Memorial Health Systems, which runs the public hospital in Pemiscot County, one of the poorest in Missouri.

The of the Affordable Care Act calls for deep cuts to Medicaid — the public insurance program for many low-income families, children and elderly Americans, as well as people with disabilities. The House version of the repeal law cuts Medicaid by $834 billion over 10 years, and the Senate revision of that bill cuts the program even more on a different timetable. The Congressional Budget Office has not yet scored the Senate version of the bill, but it said the House version would result in in the next 10 years.

And a rural hospital closure goes beyond people losing health care. Jobs, property values and even schools can suffer. Pemiscot County already has the state’s unemployment rate. Losing the hospital would mean losing the county’s largest employer.

“It would be devastating economically,” Noble said. “Our annual payrolls are around $20 million a year.”

All of that weighs on Noble’s mind when he ponders the hospital’s future. Pemiscot’s story is a lesson in how decisions made by state and federal lawmakers have put these small hospitals on the edge of collapse.

Back in 2005, things were very different. The hospital was doing well, and Noble commissioned a $16 million plan to completely overhaul the facility, which was built in 1951.

“We were going to pay for the first phase of that in cash. We didn’t even need to borrow any money for it,” Noble said, while thumbing through the old blueprints in his office at the hospital.

But those renovations never happened. In 2005, the Missouri legislature passed to Medicaid. More than 100,000 Missourians lost their health coverage, and this had an immediate impact on Pemiscot Memorial’s bottom line. About 40 percent of their patients were enrolled in Medicaid at the time, and nearly half of them lost their insurance in the cuts.

Those now-uninsured patients still needed care, though, and as a public hospital, Pemiscot Memorial had to take them in.

“So we’re still providing care, but we’re no longer being compensated,” Noble said.

And as the cost of treating the uninsured went up, the hospital’s already slim margins shrunk, and it went into survival mode.

The Affordable Care Act was supposed to help with the problem of uncompensated care. It offered rural hospitals a potential lifeline by giving states the option to expand Medicaid to a larger segment of their populations. In Missouri, that would have covered about 300,000 people.

“It was the fundamental building block [of the ACA] that was supposed to cover low-income Americans,” saidÌý, a St. Louis University health law professor.

In Missouri, Kerry Noble and Pemiscot Memorial became the poster children for Medicaid expansion. In 2013, Noble went to the state Capitol to for expansion on behalf of the hospital.

“Our facility will no longer be in existence if this expansion does not occur,” Noble told a crowd at a press conference.

“Medicaid cuts are always hard to rural hospitals,” Watson said. “People have less employer-sponsored coverage in rural areas and people are relying more on Medicaid and on Medicare.”

But the Missouri legislature voted against expansion.

For now, the doors of Pemiscot Memorial are still open. The hospital has cut some costly programs — like obstetrics — outsourced its ambulance service and has skipped upgrades.

“People might look at us and say, ‘See, you didn’t need Medicaid expansion. You’re still there,'” Noble said. “But how long are we going to be here if we don’t get some relief?”

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“That’s an air ambulance,” Fines tells him. “You’ve been on one of those.”

When Ryan was born in 2014, his mouth wasn’t connected to his stomach. It’s a condition known as . After three months in a hospital in St. Louis, the family flew to Boston, where Ryan had surgery.

The surgery worked. Ryan is active and can eat normally — he had two big pieces of fruit leather and some crackers in the 45 minutes I was there. But all that time in the hospital was expensive. In the first six months of his life, Ryan’s insurance plan was billed $750,000. The family had to pay only $5,000 of that — Ryan’s maximum out-of-pocket expenses, under his insurance plan, for 2014 and 2015.

“We were lucky we had a really good, employer-provided [health insurance] plan,” Lennon said.

All six Republicans from Missouri — including , from the district where Scott, Brianna and Ryan live — voted for the bill, which unwinds many of the provisions and protections of the Affordable Care Act, known as Obamacare. In a posted to Twitter, Hartzler says passing the bill was an important first step to replacing the ACA.

“It covers preexisting conditions,” she said, “still retains the ability for young people to stay on their parents’ policies, and makes sure that there are no lifetime caps.”

That’s true, but the bill also gives states the authority to allow insurers a number of exemptions from the federal law. For example, while the GOP bill retains the ACA provision that people, like Ryan, who have cannot be denied coverage, there’s a potential loophole. In a last-minute amendment proposed by Rep. Tom MacArthurÌý(R-N.J.), a state could to allow insurance companies to charge patients more (based on their health history) if their coverage lapses for more than 63 days.

That provision in the GOP bill would tremendously weaken the ACA protections, saidÌý, senior vice president of the Kaiser Family Foundation.Ìý(Kaiser Health News is an editorially independent program of the foundation.)

“This would guarantee access to insurance for people with preexisting conditions in theory, but not really in practice — because they could be charged astronomically high premiums,” said Levitt.

Before the Affordable Care Act was enacted in 2010, he said, it was common for people with preexisting conditions to be charged much higher premiums or to be denied coverage altogether. If a state decides to waive the federal law’s protections, this could happen again.

The amendment would require that states seeking a waiver must also help people who have high health care costs. are the most commonly cited type of program to do this, but they were often underfunded and for consumers and states.

Missouri , a Republican, the GOP health plan in March. His office didn’t respond to NPR’s questions about whether he supports the current version of this bill or he’d want Missouri to seek permission to opt out of some of the provisions. Levitt said it would likely be conservative states, like Missouri and the 18 other states that did not expand Medicaid, that may try to opt out.

Those states, Levitt said, “made a decision to not go along with the Affordable Care Act, and I think that those states are facing a similar kind of decision here.”

Fines and Lennon say they face tough decisions if this bill becomes law.

“We would have to either move to a state that didn’t waive community protections or out of the country entirely if we could,” Fines said. “I’m not going to riskÌýmy son’s health on the political whims of Jefferson City.”

But before any decisions are made in Missouri’s state capital, the GOP bill is in the hands of the U.S. Senate, where it could change before becoming federal law.

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“Well, I had a couple of issues,” he said.

That’sÌýputting it mildly.

Over two years, he dealt withÌýhepatitis C and diverticulitis. That was on top of his persistent kidney stones, diabetes and other health problems.

“I had to go back and refinance the farm,” he said. “By the time the two years was up, I had run up between $70,000 and $100,000 in hospital bills.”

He does not want to end up in that situation again, so he is paying close attention to whatÌýRepublican working its way through Congress might mean for him.

“And my estimated income is less than $20,000. So I’d have to go back to Plan A and hope I make it to 65, you know?” he chuckled.

Insurance premiums tend to be higher in rural areas where the population tends to be older, poorer and sicker than elsewhere. And Maggie Elehwany of the National Rural Health Association said there’s another issue: 80 rural hospitals have across the country since 2010.

“We’ve got an access crisis going on,” she said. “What this House bill does is nothing — nothing to address the rural hospital closure crisis. You’ve got to understand that so much of that is linked to not only the health, but to the economic vitality of the community. If a hospital closes in a rural area, it closes for good.”

One reason for these hospital closures is that 19 states, including Missouri, ÌýMedicaid, which left poor rural patients uninsured. The GOP proposal would cut Medicaid more over time.

Bentlage said his county recently increased property taxes to keep its hospital open.

“It falls on the farmers,” he said. “My property tax on the hospital went from about $80 to about $400. And it’s still in trouble.”

Missouri’s Republican congressional delegation Obamacare has failed. And Bentlage, whose positive experience with the health law once was featured in a healthcare.gov video, said the ACA does need work.

“There’s problems with it,” he said, “but I don’t think it’s worth scrapping.” All you need to do, he said, is look at how it’s helped him.

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She called up a major insurer in the St. Louis area where she lives, and it offered her a plan with a hefty $6,000 deductible — that’s the amount she would have to cover herself before the insurance kicks in.

When she balked, the salesman on the phone suggested that she could buy a “gap plan,” a separate policy for $50 a month to cover her deductible.

“After I got off the phone with him, I realized: That’s actually just insurance for my insurance,” she said, laughing.

Gap plans, used to cover out-of-pocket expenses like high deductibles, are becoming increasingly popular among consumers and businesses.

The rising price of insurance is driving the trend, explained insurance broker Ryan Hillenbrand, president of the Missouri Association of Health Underwriters.

Now, there’s renewed interest in gap plans. With monthly premiums on health insurance going up, more people are choosing cheaper, high-deductible options. In 2016, more than of people buying insurance under the ACA chose plans with an of $3,000 or higher.

Next year, the cost of one of the most popular plans available under the Affordable Care Act could by 10 percent on average across the country. That comes on top of a 5 percent jump the year before.

When consumers see those prices, Hillenbrand said, “they get sticker shock.”

“If you don’t qualify for a subsidy, you’re bearing the brunt of all that cost,” Hillenbrand said. “And here come the gap plans.”

About 8 in 10 people qualify for some form of subsidy on the ACAÌýexchanges, helping to make insurance more affordable for consumers.

Businesses, on the other hand, are facing those costs on their own. And for some businesses, especially smaller firms, gap plans can make a lot of sense, said Alex Forrest, an insurance broker in South Carolina.

“The cost of health insurance is going up, and businesses have been forced to deal with that by raising their deductibles or increasing out-of-pocket costs for their employees,” he said. “That stinks.”

With a gap plan, he said, companies can offer a package of health benefits that keeps out-of-pocket-expenses for employees down. And they still spend less than they would onÌýhigher-priced plans with lower deductibles.

Forrest said he has seen more gap insurance products for businesses come to market in the past few years. They’re being marketed as a way to keep out-of-pocket expenses low for employees. This explaining a plan called the “Premium Saver” boasts: “The only thing that’s really different for you is, now, you have two [insurance] cards instead of one.”

St. Louis footwear company Diba Imports, for example, purchased both a high-deductible health plan and a type of gap plan called “hospital indemnity insurance” for its roughly 30 employees.

“It basically reimburses most of your deductible if you have an illness or injury that puts you in the hospital,” said Diane Butrus, the company’s COO.

Butrus said that Diba used to pay the deductibles directly for its employees, but as those deductibles started rising, eventually up to $3,000, “We couldn’t afford to do that anymore.”

The unpredictability was especially hard for a small company like Diba. The cost of covering employee deductibles swung widely year to year, hitting $25,000 one year when several employees needed serious care.

The hospital indemnity plan costs the company just under $50 a month per employee — not exactly cheap at about $18,000 per year — but at least Diba knows exactly how much it will spend on insurance every year.

“It’s been very good,” said Butrus.

Not everyone is bullish about gap plans, however, especially for individual buyers.

Health economist of Mathematica Policy Research, an independent research firm, said the insurance reforms in the ACA were designed “basically to drive these kinds of creative insurance arrangements out of the market.”

Because gap plans aren’t major medical insurance, Chollet explained, they’re not regulated by the health care law and can avoid complying with consumer protections built into the law. So the companies providing gap insurance, she said, “can ask you about your health status, they can deny you coverage, they can do all of the kinds of things that the Affordable Care Act prohibits.”

Chollet said individuals might be better off getting an Obamacare plan through their state exchange, or at least checking to see if they qualify for subsidies, as 80 percent of consumers on the exchanges do.

That’s what Lohr ended up doing. It took her three full days on HealthCare.gov to find the best plan, but after her tax credit, her monthly premium is about $200 and her deductible is just $600.

It’s “a much better plan,” she says.

For people who are intimidated, overwhelmed or find the whole process of choosing a plan unmanageable, there are dozens of free in each state — people you can talk to who will help you choose your coverage. It’s something Lohr wishes she had known about when she started searching for a plan.

This story is part of a reporting partnership with NPR, Side Effects Public Media and Kaiser Health News.

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

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Missouri law requires pharmacies to keep controlled substances — drugs like oxycodone and fentanyl with a high addiction potential — locked up at all times.

Logan goes further than the law requires.

He’s been a pharmacist for 40 years. For the last 20, he has also been a reserve deputy with two local sheriff’s departments, investigating prescription drug abuse. That puts him on edge in his day job.

In the against America’s surging opioid drug addiction, 49 states, the District of Columbia and even Guam have . Missouri is the only state that hasn’t. A protracted political battle has kept the state from passing a law to establish one. That leaves pharmacists like Logan with few options.

He can only check the prescription history of patients on Medicaid, which tracks such data. But when a patient pays cash — a red flag for Logan — there is no record to check leaving pharmacists to guess whether the patient is in genuine pain, feeding an addiction or maybe looking for pills to sell.

“We want to take the best care of everybody that we can, and without a PDMP we are absolutely flying blind,” he said.

Restrictions Versus Privacy

State Rep. Holly Rehder, whose district includes Charleston, has championed establishing a database ever since joining the legislature in 2013.

“I’ve been working on this since my feet hit the floor,” she said.

It’s an issue close to her heart. Her cousin died of a drug overdose. Her mother was addicted to prescription medications. Her sister used heroin. And for 13 years, her own daughter has struggled with drug abuse — an addiction that began with a legal prescription for Lorcet.

“I’m very candid about it,” Rehder said. “I don’t believe God gave me a microphone to keep my mouth shut.”

She cites these databases’ success in limiting drug abuse in other states. They make it harder for pill-seekers to “doctor shop,” meaning go from doctor to doctor getting multiple, simultaneous prescriptions for the same drug.

One year after New York required its prescribers to check the state’s PDMP before writing a prescription, for example, doctor shopping dropped by an 75 percent.

Doctors surveyed in many states, including , say prescription drug monitoring programs have helped them identify opioid drug abuse and intervene with patients who need help. Those are reasons the federal government strongly recommends the databases.

For the third straight year, Rehder’s bill has passed the Missouri House and moved on to the Senate. There, each year, it’s been blocked by her main opponent on this issue, Sen. Rob Schaaf, a fellow Republican.

“It’s just the heavy hand of government taking away your liberty,” he said. In 2012, before Rehder joined the legislature, Schaaf led an eight-hour filibuster of PDMP legislation, an act that has loomed over subsequent attempts to pass a similar bill. This year Schaaf has called the bill “dead on arrival.”

The bill is currently in committee where a hearing on it has yet to be scheduled — and it likely won’t be taken up by the full senate before the legislative session ends May 13.

Schaaf is a physician by training. To some, that background makes him a surprising opponent to prescription drug monitoring, which is supported by the Missouri Academy of Family Physicians, the Missouri American College of Physicians and the Missouri State Medical Association, .

He argues that drug monitoring may inhibit doctors from prescribing medications that patients really need. His main objection, though, is about privacy.

“The monitoring program would put every citizen’s private drug information on a government database accessible to 30,000 people with usernames and passwords,” he said. “That’s just an outrage.”

Rehder doesn’t buy that argument. The database is electronic medical information, she said, so it would be protected by the same privacy laws protecting all electronic medical records. “It’s not like anyone can go on a phishing expedition in this data.”

“There is no data that is secure,” Schaaf countered, citing hacks against the IRS and the Department of Veteran Affairs, and even Hillary Clinton’s email imbroglio.

Rehder argues that 49 other states have faced these same questions about security and Missouri would be able to follow the best practices they’ve developed.

Schaaf saidÌýhe isn’t entirely opposed to prescription drug monitoring. He saidÌýhe would allow Rehder’s bill to pass the Senate if it included a provision that final approval for the database would be put before the voters — a test he doubts the bill could pass.

For the past three years, he has proposed his own monitoring legislation that would limit access to the database to Missouri’s Bureau of Narcotics and Dangerous Drugs, which would then communicate concerns to providers.

Rehder saidÌýshe can’t support his bill because it would be cumbersome and impractical to implement, and that it’s doctors who should be making decisions with the data.

“Missouri is the only state that doesn’t have this. It’s very shameful,” Rehder said. “It’s hurting our population so much.”

In March, St. Louis County, which has one of the state’s highest drug overdose death rates, passed its own PDMP. Other counties have signaled they would consider doing the same.

Rehder saidÌýthis is better than nothing, though she prefers a statewide database over a patchwork of county systems.

“We have got to start realizing that this isn’t something we can close our eyes and turn our heads to because it’s not going to affect us. It’s affecting us,” she said. “Our families are being torn apart, lives are being destroyed.”

Twenty miles down the road from Logan’s pharmacy and also in Rehder’s district, 33-year-old Jason Lynch is close to completing a 120-day stay at Mission Missouri, an addiction treatment facility.

Lynch was given his first prescription painkiller by an older student on the school bus when he was just 11 years old.

“I think right from the get-go I was hooked because the next day I was trying to get some extra lunch money to buy some more,” Lynch said.

He’s battled opioid use for 22 years, feeding his addiction with pills prescribed to him by doctors. “I would research [symptoms] on the Internet and say, ‘This is what’s going on with my back.’ ”

Usually, Lynch said, the doctor would write him a prescription.

“It’s nobody’s fault but my own,” Lynch saidÌýof his addiction, but, he added, getting the pills “should have been a lot harder.”

“You just think about what if those drugs weren’t so available to him,” Rehder said. “How could his life have been different?”

This story is part of a reporting partnership with Kaiser Health News,Ìý,Ìýand .

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

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