Su prima mensual de $435 por la cobertura familiar es casi igual a la del seguro de su trabajo anterior. Pero el plan de salud de su empleo actual tiene un deducible anual de $4.000, que debe pagar de su bolsillo antes de que el seguro comience a cubrir los gastos médicos de su familia cada año.

“Ahora todo es el precio total”, dijo este hombre de 53 años, que trabaja en un almacén al sur del área de Dallas-Fort Worth. “Ha sido un poco difícil”.

Para reducir sus gastos, Garza cambió su medicamento para la diabetes por otro más económico y dejó de usar el monitor continuo de glucosa que controlaba sus niveles de azúcar en sangre. Desde que empezó en este trabajo hace casi dos años, comentó, su nivel de hemoglobina A1c ha ido subiendo: pasó del 7% o menos —el objetivo recomendado— a un 14% en su visita médica más reciente, en noviembre.

“Mi A1c está por las nubes porque técnicamente ya no estoy usando el medicamento correcto como antes”, lamentó Garza. “Estoy tomando lo que puedo pagar”.

Los planes con deducibles altos —es decir, la cantidad que los pacientes deben abonar por la mayoría de los servicios médicos antes de que el seguro se haga cargo— se han vuelto cada vez más comunes.

En 2024, la mitad de los empleadores ofreció este tipo de cobertura, comparado con el 38% en 2015, según datos federales. Estos planes también están disponibles a través del mercado de seguros de la Ley de Cuidado de Salud a Bajo Precio (ACA).

Con los aumentos en las primas del mercado de ACA para el próximo año y la posible finalización de varios subsidios a fin de 2025, más personas enfrentan decisiones difíciles al comparar el costo mensual de las primas con los deducibles. Para poder pagar un seguro, algunas personas optan por planes con primas bajas pero deducibles altos, apostando a que no tendrán crisis médicas.

Pero estos planes representan un reto particular para quienes viven con enfermedades crónicas, como los 38 millones de personas que tienen diabetes tipo 1 o tipo 2 en Estados Unidos.

Según un estudio publicado en 2024, los adultos con diabetes que, involuntariamente, pasan a un plan con deducible alto enfrentan un 11% más de riesgo de hospitalización por infarto que quienes tienen otro tipo de cobertura. También tienen un 15% más de peligro de derrame cerebral y más del doble de probabilidad de quedar ciegos o desarrollar enfermedad renal en etapa terminal.

“Todas estas complicaciones son prevenibles”, señaló Rozalina McCoy, autora principal del estudio.

Atención vs. costo

El objetivo inicial de los planes con deducibles altos era fomentar mejores decisiones al buscar atención médica, explicó McCoy, profesora asociada en la University of Maryland School of Medicine, en College Park.

Pero mientras que alguien con un dolor de oído insoportable buscará atención médica, dijo, quienes tienen niveles de azúcar en sangre fuera de control tal vez no sientan la misma urgencia —a pesar del posible daño a largo plazo— debido al fuerte impacto financiero.

“No hay síntomas hasta que ya es demasiado tarde”, dijo. “Y en ese punto, el daño es irreversible”.

En promedio, la atención médica para personas con diabetes cuesta $12.022  al año, según un análisis de datos de 2022. La diabetes tipo 2, que es la forma más común, se diagnostica cuando el cuerpo deja de producir suficiente insulina o no la utiliza de forma adecuada, lo que dificulta controlar el nivel de azúcar en la sangre.

En la diabetes tipo 1, el cuerpo no produce insulina. Las personas con esta enfermedad deben cubrir no solo el costo de la insulina y otros medicamentos, sino también el de los equipos necesarios para su atención.

Mallory Rogers calcula que gasta unos $1.200 al mes en el tratamiento de su hija Adeline, de 6 años, que tiene diabetes tipo 1. Ese monto incluye insulina, una bomba de insulina y un monitor continuo de glucosa. No están contemplados los suministros de emergencia que se requieren si alguno de estos dispositivos falla: otro tipo de insulina, tiras para medir la glucosa en sangre y dos frascos de un aerosol nasal que cuesta casi $600 y debe reponerse al menos una vez al año.

“Si no tuviera insulina, estaría en una situación de emergencia en menos de dos horas”, explicó Rogers, consultora en tecnología que vive en Sanford, Florida. La mujer ha estado ahorrando para cuando su hija tenga que usar el plan de salud con deducible alto que ofrece su empleador, que alcanza los $3.300 para la cobertura familiar.

Decisiones impositivas

Muchos planes de seguro vienen con deducibles cada vez más altos. Pero para que un plan se considere oficialmente de “deducible alto” —y así pueda ofrecer una cuenta de ahorros para gastos médicos (HSA)— el deducible en 2026 tiene que ser de al menos $1.700 para cobertura individual y $3.400 para cobertura familiar, según las reglas del IRS.

En 2026, quienes tienen acceso a una cuenta de ahorros para la salud (HSA) a través de su plan o de su empleador pueden obtener beneficios fiscales aportando hasta $8.750 por familia o $4.400 por persona, si es que pueden pagarlo. El empleador de Rogers aporta $2.000 a lo largo del año, y el de Garza contribuye con $1.200.

Rogers reconoce que ha tenido suerte: ha logrado ahorrar $7.000 en su cuenta HSA para cuando el seguro de su hija se transfiera a su plan.

“Agregar una carga financiera a una condición médica ya de por sí estresante, me parte el corazón”, dijo al pensar en quienes no pueden ahorrar lo mismo. “Nadie pide tener diabetes, ya sea tipo 1 o tipo 2”.

En 2024, el deducible promedio en los planes de empleadores fue de $2.750, pero pueden superar los $5.000, según George Huntley, director ejecutivo del Diabetes Leadership Council y de la Diabetes Patient Advocacy Coalition.

Cuando los deducibles son demasiado altos, aseguró Huntley, lo primero que la gente empieza a recortar es el tratamiento básico: “No toman el medicamento que deberían tomar para controlar la glucosa. Racionan la insulina, si ese es su caso. Toman las pastillas día por medio”.

Garza sabe que debería hacer más para controlar su diabetes, pero su situación económica no se lo permite. Su seguro anterior cubría un tipo más novedoso de medicamentos para la diabetes, conocidos como agonistas de GLP-1, por $25 mensuales. También cubría sin costo sus otros medicamentos, como los de la presión arterial y el colesterol, y su monitor continuo de glucosa.

Con su nuevo seguro, paga $125 mensuales por la insulina y otros medicamentos. Solo ve a su endocrinólogo dos veces al año.

“Quiere verme cada tres meses”, comentó Garza. “Pero le dije que no es posible a $150 la consulta”.

Además, generalmente necesita exámenes de laboratorio antes de cada visita, los que le cuestan otros $111.

El año próximo, el deducible promedio de un plan Plata en el mercado de ACA será de $5.304, sin reducciones de costos compartidos, según un análisis de KFF. Para un plan Bronce, el promedio será de $7.476.

Una visita médica anual y algunos exámenes preventivos, como una mamografía, estarán cubiertos sin costo para el paciente.

Además, quienes comparan planes —ya sea a través de su empleador o del mercado de seguros— deben tener en cuenta cuál es su gasto máximo de bolsillo anual, que se sigue aplicando incluso después de cubrir el deducible, explicó Huntley.

Por ejemplo, el plan familiar de Garza requiere que él pague el 20% de los costos hasta llegar a los $10.000.

Dado que sus niveles de azúcar están tan elevados, el doctor le recetó una insulina de acción rápida para usar con las comidas, que cuesta $79 adicionales al mes. Garza planeaba surtir esa receta en diciembre, cuando solo debería pagar el 20% del costo: ya cumplió su deducible pero aún no alcanzó su máximo de bolsillo.

A Garza le gusta su trabajo a pesar del plan de salud, y dijo que nunca ha faltado ni un día, ni siquiera recientemente, cuando tuvo un virus estomacal. Hacia finales de 2025, seguía sin decidir si inscribirse o no en el seguro médico cuando llegue el período de afiliación de su compañía, a mediados de 2026.

Le preocupa que dejar el seguro ponga en riesgo a su familia si se presenta una emergencia médica. Sin embargo, comentó, podría usar el dinero que ahora paga en primas mensuales para cubrir directamente su atención médica y así controlar mejor su diabetes.

“Para serle honesto, me siento atrapado”, concluyó.

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His monthly premium payment of $435 for family coverage is roughly the same as the insurance at his previous job. But the policy at his current job carries an annual deductible of $4,000, which he must pay out-of-pocket for his family’s care until he reaches that amount each year.

“Now everything is full price,” said the 53-year-old, who works at a warehouse just south of Dallas-Fort Worth. “That’s been a little bit of a struggle.”

To reduce his costs, Garza switched to a lower-cost diabetes medication, and he no longer wears a continuous glucose monitor to check his blood sugar. Since he started his job nearly two years ago, he said, his blood sugar levels have inched upward from an A1c of 7% or less, the target goal, to as high as 14% at his most recent doctor visit in November.

“My A1c is through the roof because I’m not on, technically, the right medication like before,” Garza said. “I’m having to take something that I can afford.”

Plans with high deductibles — the amount that patients must pay for most medical care before insurance starts pitching in — have become increasingly common. In 2024, half of private-industry employees participating in medical care plans were offered this type of insurance, up from 38% in 2015, according to federal data. Such plans are also offered through the Affordable Care Act marketplace.

With ACA marketplace premiums for next year increasing and many of the subsidies to help people pay for them poised to expire at year’s end, more people face tough choices as they weigh monthly premium costs against deductibles. To afford insurance at all, people may opt for a plan with low premium payments but with a high deductible, gambling that they won’t have any medical crises.

But high-deductible plans pose a particular challenge for those with chronic conditions, such as the 38 million Americans who live with Type 1 or Type 2 diabetes. Adults with diabetes who are involuntarily switched to a high-deductible plan, compared with adults on other types of insurance, face an 11% higher risk of being hospitalized with a heart attack, a 15% higher risk of hospitalization for a stroke, and more than double the likelihood that they’ll go blind or develop end-stage kidney disease, according to a study published in 2024.

“All of these complications are preventable,” said Rozalina McCoy, the study’s lead author.

Care vs. Cost

The initial rationale behind such high-deductible plans was to encourage people to become wiser health care shoppers, said McCoy, an associate professor of medicine at the University of Maryland School of Medicine in Baltimore. And they can be a good fit, proponents say, for people who don’t use a lot of medical care or who have cash on hand for a health crisis.

But while people with an excruciating earache will seek care, McCoy said, those with unhealthy blood sugar levels might not feel as urgent a need to seek treatment — despite the potential long-term damage — given the acute financial pain.

“You have no symptoms until it’s too late,” she said. “At that point, the damage is irreversible.”

Overall, medical care for people with diabetes costs insurers and patients an average of $12,022 annually to treat the disease, according to an analysis. Type 2 diabetes, the more common form, is diagnosed when the body can no longer process or produce enough insulin to adequately regulate blood sugars. With Type 1, the body can’t produce insulin. Those with the disease may end up on the financial hook not just for insulin and other types of medication but for related equipment.

Mallory Rogers, whose 6-year-old daughter, Adeline, has Type 1, calculates that it costs roughly $1,200 a month for insulin, a pump, and a continuous glucose monitor. That figure doesn’t include the cost of emergency supplies needed in case Adeline’s technology malfunctions. Those include another type of insulin, blood-testing strips, and a nasal spray that’s nearly $600 for a two-pack of vials — supplies that must be replaced once a year or more frequently.

“If she doesn’t have insulin, it would become an emergency situation within two hours,” said Rogers, a technology consultant who lives in Sanford, Florida. Rogers has been saving for the coming year when her daughter moves to the high-deductible health plan offered by Rogers’ employer, which has a $3,300 deductible for family coverage.

Taxing Decisions

Many insurance plans carry increasingly high deductibles. But to be defined as a high-deductible health plan — and thus be eligible to offer a health savings account — a plan’s deductible for 2026 must be at least $1,700 for an individual and $3,400 for a family, according to IRS rules.

Health savings accounts enable people to squirrel away money that can be rolled over from year to year to be used for eligible medical expenses, including prior to meeting a deductible. Such accounts, available through a plan or employer, can provide tax benefits. The contributions are limited to $4,400 individually and $8,750 for a family in 2026, and employers may contribute toward that total. Rogers’ employer pays $2,000 spread out over the year, and Garza’s contributes $1,200.

Rogers recognizes that she’s fortunate to have accumulated $7,000 so far in her health savings account to prepare for her daughter’s insurance shifting to Rogers’ plan.

“Adding a financial burden to an already very stressful medical condition, it hurts my heart,” she said, reflecting on those who can’t similarly stockpile. “Nobody asks to have diabetes, Type 1 or Type 2.”

The median deductible for employer health insurance plans was $2,750 in 2024, but deductibles can run $5,000 or higher, said George Huntley, CEO of both the Diabetes Leadership Council and Diabetes Patient Advocacy Coalition.

When deductibles are too high, Huntley said, routine maintenance is what patients skimp on: “You don’t take the drug that you’re supposed to take to maintain your blood glucose. You ration your insulin, if that’s your scenario. You take pills every other day.”

Garza knows he should do more to control his blood sugar, but financial realities complicate the equation. His previous health plan covered a newer class of diabetes medication, called a GLP-1 agonist, for $25 a month. He wasn’t charged for his remaining medications, which included blood pressure and cholesterol drugs, or his continuous glucose monitor.

With his new insurance, he pays $125 monthly for insulin and several other medications. He doesn’t see his endocrinologist for checkups more than twice a year.

“He wants to see me every three months,” Garza said. “But I told him it’s not possible at $150 a pop.”

Plus, he typically needs lab testing before each visit, an additional $111.

In 2026, the deductible for a “silver”-level plan on the marketplace will average $5,304 without cost-sharing reductions, according to an analysis from KFF, a health information nonprofit that includes KFF Health News. For a “bronze”-level plan, it will be $7,476. An annual visit and some preventive screenings, such as a mammogram, would be covered free of cost to the patient.

Moreover, people comparing plan options, whether through their employer or the marketplace, should figure out their annual out-of-pocket maximum, which still applies after the deductible is met, Huntley said.

Garza’s family policy requires him to pay 20% until he reaches $10,000, for example.

Given Garza’s high blood sugar levels, his doctor prescribed a fast-acting form of insulin to take as needed with meals, which costs an additional $79 monthly. He planned to fill it in December, when he’s responsible for only 20% of the cost after he has hit his deductible but not yet reached his out-of-pocket maximum.

Garza likes his job despite its health plan, saying he’s never missed a day of work, even recently when he had a stomach bug. As of late 2025, he remained conflicted about whether to sign up for health insurance when his company’s enrollment period rolls around in mid-2026.

He worries that dropping insurance would place his family too much at risk if a major medical crisis struck. Still, he pointed out, he could then use the money he now spends on monthly premiums to directly pay for care to better manage his diabetes.

“I’m just stuck, to be honest with you,” he said.

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Bynum, then in his second year of residency training as a family medicine physician, was wrapping up a long shift when he was called into an emergency delivery. To save the baby’s life, he used a vacuum device, which applies suction to assist with rapid delivery.

The baby emerged unharmed. But the mother suffered a severe vaginal tear that required surgical repair by an obstetrician. Soon afterward, Bynum retreated to an empty hospital room, trying to process his feelings about the unexpected complication.

“I didn’t want to see anybody. I didn’t want anybody to find me,” said Bynum, now an associate professor of family medicine at Duke University School of Medicine in North Carolina. “It was a really primitive response.”

Shame is a common and highly uncomfortable human emotion. In the years since that pivotal incident, Bynum has become a leading voice among clinicians and researchers who argue that the intense crucible of medical training can amplify shame in future doctors.

He is now part of an emerging effort to teach what he describes as “shame competence” to medical school students and practicing physicians. While shame can’t be eliminated, Bynum and his research colleagues maintain that related skills and practices can be developed to reduce the culture of shame and foster a healthier way to engage with it.

Without this approach, they argue, tomorrow’s doctors won’t recognize and address the emotion in themselves and others. And thus, they risk transmitting it to their patients, even inadvertently, which may worsen their health. Shaming patients can backfire, Bynum said, making them defensive and leading to isolation and sometimes substance use.

The U.S. political environment presents an additional obstacle. Health and Human Services Secretary Robert F. Kennedy Jr. and other top Trump administration health officials have publicly blamed autism, diabetes, attention-deficit/hyperactivity disorder, and other chronic issues in large part on the lifestyle choices of people with the conditions — or their parents. For instance, FDA Commissioner Marty Makary suggested in a Fox News interview that diabetes could be better treated with cooking classes than “just throwing insulin at people.”

Even before the political shift, that attitude was reflected at doctors’ offices as well. A 2023 study found that one-third of physicians reported feeling repulsed when treating patients with Type 2 diabetes. About 44% viewed those patients as lacking motivation to make lifestyle changes, while 39% said they tended to be lazy.

“We don’t like feeling shame. We want to avoid it. It’s very uncomfortable,” said Michael Jaeb, a nurse at the University of Wisconsin-Madison, who has conducted a review of related studies, published in 2024. And if the source of shame is from the clinician, the patient may ask, “‘Why would I go back?’ In some cases, that patient may generalize that to the whole health care system.”

Indeed, Christa Reed dropped out of regular medical care for two decades, weary of weight-related lectures. “I was told when I was pregnant that my morning sickness was because I was a plus-size, overweight woman,” she said.

Except for a few urgent medical issues, such as an infected cut, Reed avoided health care providers. “Because going into a doctor for an annual visit would be pointless,” said the now 45-year-old Minneapolis-area wedding photographer. “They would only just tell me to lose weight.”

Then, last year, severe jaw pain drove Reed to seek specialty care. A routine blood pressure check showed a sky-high reading, sending her to the emergency room. “They said, ‘We don’t know how you’re walking around normal,’” she recounted.

Since then, Reed has found supportive physicians with expertise in nutrition. Her blood pressure remains under control with medication. She’s also nearly 100 pounds below her heaviest weight, and she hikes, bikes, and lifts weights to build muscle.

Savannah Woodward, a California psychiatrist, is among a group of physicians trying to bring attention to the detrimental effects of shame and develop strategies to prevent and mitigate it. While this effort is in the early stages, she co-led a session on the spiral of shame at the American Psychiatric Association’s annual meeting in May.

If physicians don’t acknowledge shame in themselves, they can be at risk of depression, burnout, sleeping difficulties, and other ripple effects that erode patient care, she said.

“We often don’t talk about how important the human connection is in medicine,” Woodward said. “But if your doctor is burned out or feeling like they don’t deserve to be your doctor, patients feel that. They can tell.”

In a survey conducted this year, 37% of graduating students reported feeling publicly embarrassed at some point in medical school. And nearly 20% described public humiliation, according to the annual survey by the Association of American Medical Colleges.

Medical students and resident physicians are already prone to perfectionism, along with an almost “masochistic” work ethic, as Woodward described it. Then they’re run through a gantlet of exams and years of training, amid constant scrutiny and with patients’ lives on the line.

During training, physicians work in teams and make presentations to teaching faculty about a patient’s medical issues and their recommended treatment approach. “You trip over your words. You miss things. You get things out of order. You go blank,” Bynum said. And then shame creeps in, he said, leading to other debilitating thoughts, such as “‘I’m no good at this. I’m an idiot. Everyone around me would have done this so much better.’”

Yet shame remains “a crack in your armor that you don’t want to show,” said Karly Pippitt, a family medicine physician at the University of Utah who has taught medical students about the potential for shame as part of a broader ethics and humanities course.

“You’re taking care of a human life,” she said. “Heaven forbid that you act like you’re not capable or you show fear.”

When students are taught about shame, the goal is to help future physicians recognize the emotion in themselves and others, so they don’t perpetuate the cycle, Pippitt said. “If you felt shamed throughout your medical education, it normalizes that as the experience,” she said.

Above all, physicians-in-training can work to reframe their mindset when they receive a poor grade or struggle to master a new skill, said Woodward, the California psychiatrist. Instead of believing that they’ve failed as a physician, they can focus on what they got wrong and ways to improve.

Last year, Bynum started teaching Duke physicians about shame competence, beginning with roughly 20 OB-GYN residents. This year, he launched a larger initiative with The Shame Lab, a research and training partnership between Duke University and the University of Exeter in England that he co-founded, to reach about 300 people across Duke’s Department of Family Medicine and Community Health, including faculty and residents.

This sort of training is rare among Duke OB-GYN resident Canice Dancel’s peers in other programs. Dancel, who completed the training, now strives to support students as they learn skills such as how to suture. She hopes they will pay that approach forward in “a chain reaction of being kind to each other.”

More than a decade after Bynum experienced that stressful emergency delivery, he still regrets that shame kept him from checking on the mother as he usually would following delivery. “I was too scared of how she was going to react to me,” he said.

“It was a little devastating,” he said, when a colleague later told him that the mother wished he had stopped by. “She had passed a message along to thank me for saving her baby’s life. If I had just given myself a chance to hear that, that would have really helped in my recovery, to be forgiven.”

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After the 36-year-old was diagnosed with stage 3 breast cancer in December, she learned that there weren’t any cancer services in her community of Del Rio, a town of 35,000 near the Texas-Mexico border.

To get treatment, she and her husband, Manuel, must drive nearly three hours east to San Antonio. So they set an alarm for 4 a.m., which allows for just enough time to roll out of bed, brush their teeth, and begin the long drive navigating dark roads while watching for deer.

About an hour before they arrive at the cancer clinic, the couple pulls over to quickly eat fast food in the car. The break gives Herlinda time to apply ointment on the port where the needle for her chemotherapy will be inserted.

“It numbs the area, so when I get to the infusion room the needle won’t hurt,” she said.

For rural patients, getting cancer treatment close to home has always been difficult. But in recent years, chemotherapy deserts have expanded across the United States, with 382 rural hospitals halting services from 2014 to 2022, according to a report published this year by Chartis, a health analytics and consulting firm.

Texas led that list, with 57 rural hospitals — nearly half of those statewide that had offered chemotherapy — cutting the service by 2022, according to the analysis. Rural hospitals in states like Texas, which hasn’t expanded Medicaid, have been more likely to close, according to data from the Cecil G. Sheps Center for Health Services Research.

To keep the doors open, financially strapped facilities in small communities nationwide continue to shed basic health care services, like obstetrics and chemotherapy, said Michael Topchik, executive director of the Chartis Center for Rural Health.

“The data are staggering,” Topchik said. “Can you imagine feeling that sick, and having to drive an hour in each direction, or maybe more each direction, several times a week?”

Loss of chemotherapy services can signal other gaps in cancer care, such as a shortage of local specialty physicians and nurses, which is bad news for patients, said Marquita Lewis-Thames, an assistant professor at Northwestern University in Chicago whose research covers rural cancer care.

Rural patients are less likely to survive at least five years after a cancer diagnosis compared with their urban counterparts, concluded a study co-authored by Lewis-Thames and published in JAMA Network Open in 2022. While the rural-urban survival gap narrowed over the nearly 40 years researchers studied, the disparity persisted across most racial and ethnic groups, with only a few exceptions, she said.

Many cancer drugs are now given orally and can be taken at home, but some treatments for breast, colon, and other common cancers must still be administered intravenously inside a medical facility. Even distances of an hour or two each way can strain patients who already may be coping with nausea, diarrhea, and other side effects, physicians and patient advocates said.

“It’s pretty uncomfortable for some of these patients who may have bone metastases or have significant muscular pain and have to sit in the car that long and hit road bumps,” said Shivum Agarwal, a family physician who practices in rural communities an hour west of Fort Worth, Texas.

Plus, travel can cost much more than filling the gas tank.

“Usually it requires an able-bodied family member taking off a whole day or at least half a day from work,” Agarwal said. “So, there’s a big economic cost for the family.”

In this sense, the Sanchez family is fortunate. Herlinda’s mother drives four hours from Abilene to Del Rio to watch the couple’s youngest children, their 2-year-old twins.

Cancer infusions can last as long as eight hours on top of the travel time, causing significant financial and logistical challenges, said Erin Ercoline, executive director of the San Antonio-based ThriveWell Cancer Foundation. The nonprofit provides adult patients with financial assistance, including for gaps in insurance and transportation-related costs. It has helped cover gasoline for Sanchez, who received her final round of chemotherapy in late June. The financial assistance will also pay for her hotel when she travels for breast surgery this month.

Not all rural hospitals are ending chemotherapy. Childress Regional Medical Center, a 39-bed hospital in West Texas, is constructing a 6,000-square-foot center for patients who need infusions for cancer and other diagnoses, including multiple sclerosis and rheumatology.

The infusion area, which started with two chairs in 2013 and now has four, will grow to 10 chairs and have more patient privacy when it opens next year. The next-nearest infusion center in this sprawling region is an hour or more away, which discourages some patients from seeking care, said Childress’ CEO, Holly Holcomb.

“We’ve had a handful of patients say, ‘If you can’t do it here, I’m not doing it,’” Holcomb said. She credits the federal 340B drug discount program for enabling the remote hospital to provide infusion drugs.

Hospitals that qualify for 340B can buy outpatient drugs at steep discounts. The program provides “a huge kickstand for rural hospitals,” said Topchik, of Chartis Center. Hospitals can use the savings to buoy or expand services provided to the community, he said.

But some patients are not daunted by long drives and travel costs.

“I’m from the country, so small is better — it’s just more personable,” said Dennis Woodward, 69, who lives in Woodson, Texas. He has a type of non-Hodgkin lymphoma and chooses to make a two-hour drive to Childress. He had first visited an oncology clinic in Abilene about an hour away. The clinicians were nice, but “I felt like a number,” he said.

After his first appointment at Childress this year, his oncologist, Fred Hardwicke, walked him over to meet the nurses who would administer the medicine, Woodward recalled.

Most Fridays during Herlinda Sanchez’s chemotherapy, Manuel would nap in the car. But during her final treatment in June, he stayed nearby, counting down the hours.

Several family members joined Herlinda when she rang the bell later that afternoon to signal the end of her treatment.

“I don’t want to be in San Antonio no more,” said Herlinda, a mother of four who does administrative work at Laughlin Air Force Base near Del Rio. “I’m looking forward to the break.”

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“I remember that drive home, bringing her back home, and we basically cried,” said the internal medicine physician, who had started practicing in eastern Kentucky near his childhood home shortly before his mother began feeling ill. “Nobody wants to get told they’ve got inoperable lung cancer. I cried because I knew what this meant for her.”

Now Stumbo, whose mother died the following year, in 1997, is among a group of Kentucky clinicians and researchers determined to rewrite the script for other families by promoting training and boosting awareness about early detection in the state with the highest lung cancer death rate. For the past decade, Kentucky researchers have promoted lung cancer screening, first recommended by the U.S. Preventive Services Task Force in 2013. These days the Bluegrass State screens more residents who are at high risk of developing lung cancer than any state except Massachusetts — 10.6% of eligible residents in 2022, more than double the national rate of 4.5% — according to the most recent American Lung Association analysis.

The effort has been driven by a research initiative called the Kentucky LEADS (Lung Cancer Education, Awareness, Detection, and Survivorship) Collaborative, which in 2014 launched to improve screening and prevention, to identify more tumors earlier, when survival odds are far better. The group has worked with clinicians and hospital administrators statewide to boost screening rates both in urban areas and regions far removed from academic medical centers, such as rural Appalachia. But, a decade into the program, the researchers face an ongoing challenge as they encourage more people to get tested, namely the fear and stigma that swirl around smoking and lung cancer.

Lung cancer kills more Americans than any other malignancy, and the death rates are worst in a swath of states including Kentucky and its neighbors Tennessee and West Virginia, and stretching south to Mississippi and Louisiana, according to data from the Centers for Disease Control and Prevention.

It’s a bit early to see the impact on lung cancer deaths because people may still live for years with a malignancy, LEADS researchers said. Plus, treatment improvements and other factors may also help reduce death rates along with increased screening. Still, data already shows that more cancers in Kentucky are being detected before they become advanced, and thus more difficult to treat, they said. Of total lung cancer cases statewide, the percentage of advanced cases — defined as cancers that had spread to the lymph nodes or beyond — hovered near 81% between 2000 and 2014, according to Kentucky Cancer Registry data. By 2020, that number had declined to 72%, according to the most recent data available.

“We are changing the story of families. And there is hope where there has not been hope before,” said Jennifer Knight, a LEADS principal investigator.

Older adults in their 60s and 70s can hold a particularly bleak view of their mortality odds, given what their loved ones experienced before screening became available, said Ashley Shemwell, a nurse navigator for the lung cancer screening program at Owensboro Health, a nonprofit health system that serves Kentucky and Indiana.

“A lot of them will say, ‘It doesn’t matter if I get lung cancer or not because it’s going to kill me. So I don’t want to know,’” said Shemwell. “With that generation, they saw a lot of lung cancers and a lot of deaths. And it was terrible deaths because they were stage 4 lung cancers.” But she reminds them that lung cancer is much more treatable if caught before it spreads.

The collaborative works with several partners, including the University of Kentucky, the University of Louisville, and GO2 for Lung Cancer, and has received grant funding from the Bristol Myers Squibb Foundation. Leaders have provided training and other support to 10 hospital-based screening programs, including a stipend to pay for resources such as educational materials or a nurse navigator, Knight said. In 2022, state lawmakers established a statewide lung cancer screening program based in part on the group’s work.

Jacob Sands, a lung cancer physician at Boston’s Dana-Farber Cancer Institute, credits the LEADS collaborative with encouraging patients to return for annual screening and follow-up testing for any suspicious nodules. “What the Kentucky LEADS program is doing is fantastic, and that is how you really move the needle in implementing lung screening on a larger scale,” said Sands, who isn’t affiliated with the Kentucky program and serves as a volunteer spokesperson for the American Lung Association.

In 2014, Kentucky expanded Medicaid, increasing the number of lower-income people who qualified for lung cancer screening and any related treatment. Adults 50 to 80 years old are advised to get a CT scan every year if they have accumulated at least 20 pack years and still smoke or have quit within the past 15 years, according to the latest task force recommendation, which widened the pool of eligible adults. (To calculate pack years, multiply the packs of cigarettes smoked daily by years of smoking.) The lung association offers an online quiz, called “Saved By The Scan,” to figure out likely eligibility for insurance coverage.

Half of U.S. patients aren’t diagnosed until their cancer has spread beyond the lungs and lymph nodes to elsewhere in the body. By then, the five-year survival rate is 8.2%.

But regular screening boosts those odds. When a CT scan detects lung cancer early, patients have an 81% chance of living at least 20 years, according to data published in November in the journal Radiology.

Some adults, like Lisa Ayers, didn’t realize lung cancer screening was an option. Her family doctor recommended a CT scan last year after she reported breathing difficulties. Ayers, who lives in Ohio near the Kentucky border, got screened at UK King’s Daughters, a hospital in far eastern Kentucky. The scan didn’t take much time, and she didn’t have to undress, the 57-year-old said. “It took me longer to park,” she quipped.

She was diagnosed with a lung carcinoid tumor, a type of neuroendocrine cancer that can grow in various parts of the body. Her cancer was considered too risky for surgery, Ayers said. A biopsy showed the cancer was slow-growing, and her doctors said they would monitor it closely.

Ayers, a lifelong smoker, recalled her doctor said that her type of cancer isn’t typically linked to smoking. But she quit anyway, feeling like she’d been given a second chance to avoid developing a smoking-related cancer. “It was a big wake-up call for me.”

Adults with a smoking history often report being treated poorly by medical professionals, said Jamie Studts, a health psychologist and a LEADS principal investigator, who has been involved with the research from the start. The goal is to avoid stigmatizing people and instead to build rapport, meeting them where they are that day, he said.

“If someone tells us that they’re not ready to quit smoking but they want to have lung cancer screening, awesome; we’d love to help,” Studts said. “You know what? You actually develop a relationship with an individual by accepting, ‘No.’”

Nationally, screening rates vary widely. Massachusetts reaches 11.9% of eligible residents, while California ranks last, screening just 0.7%, according to the lung association analysis.

That data likely doesn’t capture all California screenings, as it may not include CT scans done through large managed care organizations, said Raquel Arias, a Los Angeles-based associate director of state partnerships at the American Cancer Society. She cited other 2022 data for California, looking at lung cancer screening for eligible Medicare fee-for-service patients, which found a screening rate of 1%-2% in that population.

But, Arias said, the state’s effort is “nowhere near what it needs to be.”

The low smoking rate in California, along with its image as a healthy state, “seems to have come with the unintended consequence of further stigmatizing people who smoke,” said Arias, citing one of the findings from a 2022 report looking at lung cancer screening barriers. For instance, eligible patients may be reluctant to share prior smoking habits with their health provider, she said.

Meanwhile, Kentucky screening efforts progress, scan by scan.

At Appalachian Regional Healthcare, 3,071 patients were screened in 2023, compared with 372 in 2017. “We’re just scratching the surface of the potential lives that we can have an effect on,” said Stumbo, a lung cancer screening champion at the health system, which includes 14 hospitals, most located in eastern Kentucky.

The doctor hasn’t shed his own grief about what his family missed after his mother died at age 51, long before annual screening was recommended. “Knowing that my children were born, and never knowing their grandmother,” he said, “just how sad is that?”

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Para entonces, la zona rojiza a lo largo de la línea del cabello había pasado de ser un círculo de 2 pulgadas a cubrirle casi toda la frente. Supuraba líquido y le dolía.

“La verdad es que esperaba morir de esto, porque pensaba que eso era lo que tenía que pasar”, afirmó la mujer de 41 años, madre de tres hijos y residente en Easley, Carolina del Sur.

Adcox se había reunido por primera vez con los especialistas del centro médico a finales de 2020, después de que una biopsia diagnosticara un carcinoma basocelular. La operación para extirpar el cáncer requeriría varios médicos, le dijeron, incluido un neurocirujano, debido a lo cerca que estaba de su cerebro.

Pero Adcox no tenía seguro. Había perdido su trabajo en una fábrica de automóviles en los primeros días de la pandemia y, en el momento del diagnóstico, sentía pánico ante la complejidad de la operación y la perspectiva de una factura elevada. En lugar de seguir el tratamiento, intentó camuflar la zona cancerosa en expansión durante más de un año con sombreros y flequillos largos.

Si hubiera padecido cáncer de mama o de cuello uterino, probablemente habría tenido derecho a cobertura por una ley federal que amplía el Medicaid a los pacientes de bajos ingresos diagnosticados con esos dos tipos de cáncer.

Para las mujeres con otros tipos de cáncer, así como para casi todos los hombres, las opciones son escasas, especialmente en Carolina del Sur y los otros 11 estados que aún no han implementado la expansión de Medicaid, según oncólogos y expertos en política sanitaria que estudian el acceso a la atención.

Los estudios demuestran que, a veces, los adultos sin seguro retrasan la atención, lo que puede perjudicar las probabilidades de supervivencia. Pero que los pacientes obtengan un seguro para cubrir el tratamiento se parece un poco al juego de la ruleta, es decir, depende de dónde vivan y del tipo de cáncer que padezcan.

“Es muy aleatorio; creo que eso es lo más desgarrador”, afirmó el doctor Evan Graboyes, cirujano de cabeza y cuello, y uno de los médicos de Adcox. “Vivir o morir de cáncer no debería depender del estado en el que vives”.

La Ley de Cuidado de Salud a Bajo Precio (ACA) dio a los estados la opción de ampliar Medicaid para cubrir a más personas. Poco después de la aprobación de la ley, sólo el 2,6% de los adultos de 18 a 64 años con un nuevo diagnóstico de cáncer carecían de seguro en los estados de Medicaid ampliado frente al 7,8% en los estados sin expansión, según un estudio publicado en JAMA Oncology en 2018.

Investigadores de la Sociedad Americana del Cáncer, que realizaron el análisis, estiman que unas 30,000 personas sin seguro son diagnosticadas con cáncer cada año.

Pero en todos los estados, los pacientes sin seguro, de bajos ingresos, con cáncer de mama o de cuello uterino pueden obtener cobertura, incluso si no califican para Medicaid.

Los adultos con cáncer detectado a través del Programa Nacional de Detección Temprana de Cáncer de Mama y de Cuello Uterino pueden inscribirse en Medicaid durante la duración de su tratamiento contra el cáncer, gracias al activismo y la legislación federal que comenzó hace más de tres décadas.

En 2019, se inscribieron 43,549 pacientes con estos tipos de cáncer, según un informe de la Oficina de Rendición de Cuentas del Gobierno (GAO) publicado en 2020.

“Si te diagnostican cáncer de mama o de cuello uterino, tienes suerte”, dijo la doctora Fumiko Chino, oncóloga radioterapeuta del Memorial Sloan Kettering Cancer Center de Nueva York, que estudia el acceso y los costos del tratamiento del cáncer. “De no ser así, puedes enfrentar obstáculos importantes”.

El importe total facturado a la aseguradora durante el año siguiente a un diagnóstico de cáncer puede ser abultado. Por ejemplo, los costos en 2016 ascendieron a un promedio de $168,730 por cáncer de pulmón y $137,663 por cáncer colorrectal, según un estudio de 2022 que calculó las reclamaciones a la aseguradora por varias neoplasias malignas comunes diagnosticadas en pacientes con seguro privado.

Dado que los adultos sin seguro pueden tener dificultades para pagar la atención preventiva, su cáncer puede no ser identificado hasta que esté avanzado, por lo que es más costoso para el paciente y el sistema de salud, explicó Robin Yabroff, autor del estudio en JAMA Oncology y vicepresidente científico de la Sociedad Americana del Cáncer.

Los pacientes que no pueden obtener ayuda financiera a través de un centro de la red a veces acumulan deudas médicas, utilizan tarjetas de crédito o lanzan campañas de recaudación de fondos en internet, dijo Yabroff. “Nos cuentan historias de personas que hipotecan sus casas para pagar el tratamiento del cáncer”.

Los pacientes de cáncer pueden adquirir un seguro a través del mercado de seguros de salud de ACA. Pero a menudo deben esperar hasta el período de inscripción regular al final del año, y esos planes de salud no entran en vigor hasta el comienzo del año siguiente.

Esto se debe a que la ley federal fue diseñada para animar a la gente a inscribirse cuando están sanos, lo que ayuda a controlar los costos, señaló MaryBeth Musumeci, profesora de política y gestión de la salud en la Universidad George Washington en Washington, DC. Si un nuevo diagnóstico te calificara para la nueva cobertura, dijo, “entonces se incentivaría a la gente a permanecer sin seguro mientras están sanos y piensan que no van a necesitar cobertura”.

Mientras tanto, el acceso a la cobertura de Medicaid para pacientes de bajos ingresos con cáncer de mama y de cuello uterino, es una historia de éxito que se remonta a una ley de 1990 que creó el programa nacional de cribado de mama y cuello de útero. Las mamografías empezaron a recomendarse de forma generalizada en la década de 1980, y los activistas presionaron para llegar a más personas desfavorecidas, explicó Katie McMahon, directora de políticas de la Red de Acción contra el Cáncer de la Sociedad Americana del Cáncer.

Sin embargo, una investigación demostró que algunos adultos sin seguro tenían dificultades para recibir atención por los cánceres detectados a través de los cribados, dijo McMahon. Una ley del año 2000 permitía a los estados extender Medicaid a estas personas, y en 2008 los 50 estados y el Distrito de Columbia ya lo habían hecho, según el informe de la GAO de 2020.

Para otros enfermos de cáncer, una de las vías de cobertura que les quedan, según Chino, es reunir los requisitos para la discapacidad a través de la Administración de la Seguridad Social, tras lo cual pueden solicitar Medicaid. La agencia federal tiene una larga lista de criterios para los pacientes con cáncer. También cuenta con el programa Compassionate Allowances, (Beneficios por Compasión), que ofrece revisiones más rápidas para pacientes con determinadas afecciones médicas graves, incluidos cánceres avanzados o agresivos.

Aunque las normas varían, muchos pacientes no califican hasta que la enfermedad se ha extendido o el cáncer requiere al menos un año de tratamiento intenso, explicó Chino. Esto supone un dilema para las personas que no tienen seguro pero padecen cánceres curables.

“Para tener derecho a Medicaid, tengo que esperar a que mi cáncer sea incurable”, dijo, “lo cual es muy deprimente”.

Por ejemplo, el programa de Beneficios por Compasión no incluye el carcinoma basocelular, y sólo cubre el cáncer de cabeza y cuello si se ha extendido a otras partes del cuerpo o no puede extirparse quirúrgicamente.

Adcox dijo que antes de su operación de 12 horas, el pasado mes de junio, su solicitud de ayuda económica a la Universidad Médica de Carolina del Sur estaba aún pendiente. Alguien del hospital calculó que su factura ascendería a $176,000 y le preguntó cuánto podía adelantar. Consiguió reunir $700 con la ayuda de sus seres queridos.

Pero pudo optar a una ayuda económica y no ha recibido ninguna factura, salvo de un proveedor externo de servicios de laboratorio. “Se acabó”, exclamó Adcox. Desde entonces ha recibido radioterapia y se someterá a más operaciones reconstructivas. Pero ya no tiene cáncer. “No me ha matado. No me mató”.

Aun así, no todo el mundo encuentra una red de seguridad.

Brian Becker, de El Paso, Texas, no tenía seguro ni trabajo cuando supo que padecía leucemia mielógena crónica en el verano de 2021, según contó Stephanie Gamboa, su ex mujer y madre de su hija pequeña. Su médico oncólogo le exigió un pago por adelantado, dijo, y tardó varios meses en pedir prestado el dinero suficiente.

Empezó la quimioterapia al año siguiente y, con el paso de los meses, perdió peso y se debilitó, volviendo a urgencias con infecciones y un empeoramiento de la función renal, explicó Gamboa. La última vez que su hija vio a su padre, “no podía levantarse de la cama. Era literalmente piel y huesos”, dijo Gamboa.

Becker inició los trámites para solicitar prestaciones por incapacidad. El mensaje de texto que envió a Gamboa, y que ella compartió con KHN, decía que la revisión de su solicitud comenzó en junio de 2022 y se esperaba que durara seis meses.

La carta de denegación, fechada el 4 de febrero de 2023, llegó más de un mes después de la muerte de Becker en diciembre, a los 32 años. Decía en parte: “Basado en una revisión de sus condiciones médicas, usted no califica para beneficios en esta reclamación”.

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By then, the reddish area along her hairline had grown from a 2-inch circle to cover nearly her entire forehead. It oozed fluid and was painful.

“Honestly, I was just waiting on it to kill me, because I thought that’s what was going to have to happen,” said the 41-year-old mother of three, who lives in Easley, South Carolina.

Adcox had first met with physicians at the academic medical center in late 2020, after a biopsy diagnosed basal cell carcinoma. The operation to remove the cancer would require several physicians, she was told, including a neurosurgeon, because of how close it was to her brain.

But Adcox was uninsured. She had lost her automotive plant job in the early days of the pandemic, and at the time of her diagnosis was equally panicked about the complex surgery and the prospect of a hefty bill. Instead of proceeding with treatment, she attempted to camouflage the expanding cancerous area for more than a year with hats and long bangs.

If Adcox had developed breast or cervical cancer, she likely would have qualified for insurance coverage under a federal law that extends Medicaid eligibility to lower-income patients diagnosed with those two malignancies. For female patients with other types of cancer, as well as pretty much all male patients, the options are scant, especially in South Carolina and the 11 other states that haven’t yet implemented Medicaid expansion, according to cancer physicians and health policy experts who study access to care.

In the face of potentially daunting bills, uninsured adults sometimes delay care, which can result in worse survival outcomes, research shows. The odds of patients getting insurance to help cover the cost of treatment play out a bit like a game of roulette, depending upon where they live and what type of cancer they have.

“It is very random — that’s, I think, the heartbreaking part about it,” said Dr. Evan Graboyes, a head and neck surgeon and one of Adcox’s physicians. “Whether you live or die from cancer shouldn’t really be related to what state you live in.”

The Affordable Care Act gave states the option to expand Medicaid eligibility and cover more people. Shortly after the law passed, just 2.6% of adults ages 18 to 64 with a new cancer diagnosis lacked insurance in Medicaid expansion states versus 7.8% in nonexpansion states, according to a study published in JAMA Oncology in 2018. Researchers at the American Cancer Society, who conducted the analysis, estimate that about 30,000 uninsured people are diagnosed with cancer each year.

But in all states, lower-income uninsured patients with breast or cervical cancer may have another route for coverage, even if they don’t otherwise qualify for Medicaid. Adults with cancer detected through the National Breast and Cervical Cancer Early Detection Program can enroll in Medicaid for the duration of their cancer treatment, as a result of advocacy efforts and federal legislation that started more than three decades ago.

In 2019, 43,549 breast and cervical cancer patients were enrolled, according to a Government Accountability Office report published in 2020.

“If you’re lucky to be diagnosed with breast or cervical cancer, you’re good,” said Dr. Fumiko Chino, a radiation oncologist at Memorial Sloan Kettering Cancer Center in New York City, who studies cancer treatment access and affordability. “But otherwise, you may have some significant obstacles.”

The total amount billed to the insurer during the year following a cancer diagnosis can be steep. For instance, costs in 2016 averaged $168,730 for lung cancer and $137,663 for colorectal cancer, according to a 2022 study that calculated insurance claims for several common malignancies diagnosed in privately insured patients.

Since uninsured adults can struggle to afford preventive care, their cancer may not be identified until it’s more advanced, making it costlier for the patient and the health system, said Robin Yabroff, an author of the study in JAMA Oncology and a scientific vice president at the American Cancer Society.

Patients who can’t get financial assistance through a safety-net facility sometimes rack up medical debt, use credit cards, or launch fundraising efforts though online sites, Yabroff said. “We hear stories of people who mortgage their homes to pay for cancer treatment.”

Cancer patients can purchase insurance through the ACA health insurance marketplace. But they often must wait until the regular enrollment period near the end of the year, and those health plans don’t become effective until the start of the next calendar year.

That’s because the federal law was designed to encourage people to sign up when they are healthy, which helps control costs, said MaryBeth Musumeci, an associate teaching professor of health policy and management at George Washington University in Washington, D.C. If a new diagnosis were a qualifying event for new coverage, she said, “then it would incentivize people to stay uninsured while they were healthy and they didn’t think they really were going to need coverage.”

Meanwhile, the on-ramp to Medicaid coverage for lower-income patients with breast and cervical cancer is a story of successful advocacy, dating to a 1990 law that created the national breast and cervical screening program. Mammography started to be widely recommended in the 1980s, and advocacy groups pushed to reach more underserved individuals, said Katie McMahon, a policy principal at the American Cancer Society Cancer Action Network, the organization’s advocacy arm.

But research showed that some uninsured adults struggled to get care for those cancers detected through the screening program, McMahon said. A 2000 law allowed states to extend Medicaid to them, and by 2008 all 50 states and the District of Columbia had done so, according to the 2020 GAO report.

For other cancer patients, one of the remaining avenues to coverage, according to Chino, is to qualify for disability through the Social Security Administration, after which they can apply for Medicaid. The federal agency has a lengthy list of criteria for cancer patients. It also has a Compassionate Allowances program, which offers faster reviews for patients with certain serious medical conditions, including advanced or aggressive cancers.

Although the rules vary, many patients don’t qualify until their disease has spread or the cancer requires at least a year of intense treatment, Chino said. That presents an inherent catch-22 for people who are uninsured but have curable types of cancer, she said.

“To qualify for Medicaid, I have to wait for my cancer to be incurable,” she said, “which is very depressing.”

For example, the Compassionate Allowances program doesn’t list basal cell carcinoma, and it covers head and neck cancer only if it has spread elsewhere in the body or can’t be removed surgically.

Adcox said that before her 12-hour operation last June, her financial assistance application with the Medical University of South Carolina was still pending. Someone from the hospital, she recalled, estimated the bill would be $176,000 and asked how much Adcox could put down. She cobbled together $700 with the help of loved ones.

But she did qualify for financial assistance and hasn’t received any bills, except from an outside lab services provider. “It’s over,” Adcox said. She’s since undergone radiation and will have more reconstructive surgeries. But she’s cancer-free. “It didn’t kill me. It didn’t kill me.”

Still, not everyone finds a safety net.

Brian Becker, of El Paso, Texas, was uninsured and not working when he learned he had chronic myelogenous leukemia in summer 2021, said Stephanie Gamboa, his ex-wife and the mother of their young daughter. His cancer physician required an upfront payment, she said, and it took several months to borrow enough money.

He started chemotherapy the following year, and over months lost weight and became weaker, returning to the emergency room with infections and worsening kidney function, Gamboa said. The last time their daughter saw her father, “he couldn’t get out of bed. He was literally skin and bones,” Gamboa said.

Becker started the process to request disability benefits. The text he sent Gamboa, which she shared with KHN, stated that review of his application began in June 2022 and was expected to take six months.

The denial letter, dated Feb. 4, 2023, arrived more than a month after Becker’s death in December at age 32. It read in part: “Based on a review of your medical conditions, you do not qualify for benefits on this claim.”

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Cancer coincides with roughly 1 in 1,000 pregnancies, most frequently breast cancer, melanoma, cervical cancer, lymphomas, and leukemias. But medications and other treatments can be toxic to the developing fetus or cause birth defects. In some cases, hormones that are supercharged during pregnancy fuel the cancer’s growth, putting the patient at greater risk.

Although new abortion restrictions often allow exceptions based on “medical emergency” or a “life-threatening physical condition,” cancer physicians describe the legal terms as unclear. They fear misinterpreting the laws and being left in the lurch.

For instance, brain cancer patients have traditionally been offered the option of abortion if a pregnancy might limit or delay surgery, radiation, or other treatment, said Dr. Edjah Nduom, a brain cancer surgeon at Emory University’s Winship Cancer Institute in Atlanta.

“Is that a medical emergency that necessitates the abortion? I don’t know,” Nduom asked, trying to parse the medical emergency exception in the new Georgia law. “Then you end up in a situation where you have an overzealous prosecutor who is saying, ‘Hey, this patient had a medical abortion; why did you need to do that?’” he said.

Pregnant patients with cancer should be treated similarly to non-pregnant patients when feasible, though sometimes adjustments are made in the timing of surgery and other care, according to a research overview, published in 2020 in Current Oncology Reports.

With breast cancer patients, surgery could be performed early on as part of the treatment, pushing chemotherapy to later in the pregnancy, according to the research. Cancer experts typically recommend avoiding radiation therapy throughout pregnancy, and most chemotherapy drugs during the first trimester.

But with some cancers, such as acute leukemia, the recommended drugs have known toxic risks to the fetus, and time is not on the patient’s side, said Dr. Gwen Nichols, chief medical officer of the Leukemia & Lymphoma Society.

“You need treatment urgently,” she said. “You can’t wait three months or six months to complete a pregnancy.”

Another life-threatening scenario involves a patient early in her pregnancy who has been diagnosed with breast cancer that’s spreading, and tests show that the cancer’s growth is spurred by the hormone estrogen, said Dr. Debra Patt, an oncologist in Austin, Texas, who estimated she has cared for more than two dozen pregnant patients with breast cancer.

“Pregnancy is a state where you have increased levels of estrogen. It’s actually actively at every moment causing the cancer to grow more. So I would consider that an emergency,” said Patt, who is also executive vice president over policy and strategic initiatives at Texas Oncology, a statewide practice with more than 500 physicians.

When cancer strikes individuals of child-bearing age, one challenge is that malignancies tend to be more aggressive, said Dr. Miriam Atkins, an oncologist in Augusta, Georgia. Another is that it’s unknown whether some of the newer cancer drugs will affect the fetus, she said.

While hospital ethics committees might be consulted about a particular treatment dilemma, it’s the facility’s legal interpretation of a state’s abortion law that will likely prevail, said Micah Hester, an expert on ethics committees who chairs the department of medical humanities and bioethics at the University of Arkansas for Medical Sciences College of Medicine in Little Rock.

“Let’s be honest,” he said. “The legal landscape sets pretty strong parameters in many states on what you can and cannot do.”

It’s difficult to fully assess how physicians plan to handle such dilemmas and discussions in states with near-total abortion bans. Several large medical centers contacted for this article said their physicians were not interested or not available to speak on the subject.

Other physicians, including Nduom and Atkins, said the new laws won’t alter their discussions with patients about the best treatment approach, the potential impact of pregnancy, or whether abortion is an option.

“I’m going to always be honest with patients,” Atkins said. “Oncology drugs are dangerous. There are some drugs that you can give to [pregnant] cancer patients; there are many that you cannot.”

The bottom line, maintain some, is that termination remains a critical and legal part of care when cancer threatens someone’s life.

Patients “are counseled on the best treatment options for them, and the potential impacts on their pregnancies and future fertility,” Dr. Joseph Biggio Jr., chair of maternal-fetal medicine at Ochsner Health System in New Orleans, wrote in an email. “Under state laws, pregnancy termination to save the life of the mother is legal.”

Similarly, Patt said that physicians in Texas can counsel pregnant patients with cancer about the procedure if, for instance, treatments carry documented risks of birth defects. Thus, physicians can’t recommend them, and abortion can be offered, she said.

“I don’t think it’s controversial in any way,” Patt said. “Cancer left unabated can pose serious risks to life.”

Patt has been educating physicians at Texas Oncology on the new state law, as well as sharing a JAMA Internal Medicine editorial that provides details about abortion care resources. “I feel pretty strongly about this, that knowledge is power,” she said.

Still, the Texas law’s vague terminology complicates physicians’ ability to determine what’s legally permissible care, said Joanna Grossman, a professor at SMU Dedman School of Law. She said nothing in the statute tells a doctor “how much risk there needs to be before we label this legally ‘life-threatening.’”

And if a woman can’t obtain an abortion through legal means, she has “grim options,” according to Hester, the medical ethicist. She’ll have to sort through questions like: “Is it best for her to get the cancer treatment on the time scale recommended by medicine,” he said, “or to delay that cancer treatment in order to maximize the health benefits to the fetus?”

Getting an abortion outside Georgia might not be possible for patients with limited cash or no backup child care or who share one car with an extended family, Atkins said. “I have many patients who can barely travel to get their chemotherapy.”

Dr. Charles Brown, a maternal-fetal medicine physician in Austin who retired this year, said he can speak more freely than practicing colleagues. The scenarios and related unanswered questions are almost too numerous to count, said Brown, who has cared for pregnant women with cancer.

Take as another example, he said, a potential situation in a state that incorporates “fetal personhood” in its law, such as Georgia. What if a patient with cancer can’t get an abortion, Brown asked, and the treatment has known toxic effects?

“What if she says, ‘Well, I don’t want to delay my treatment — give me the medicine anyway,’” Brown said. “And we know that medicine can harm the fetus. Am I now liable for harm to the fetus because it’s a person?”

Whenever possible, physicians have always strived to treat the patient’s cancer and preserve the pregnancy, Brown said. When those goals conflict, he said, “these are gut-wrenching trade-offs that these pregnant women have to make.” If termination is off the table, “you’ve removed one of the options to manage her disease.”

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One Texas law passed last year lists several medications as abortion-inducing drugs and largely bars their use for abortion after the seventh week of pregnancy. But two of those drugs, misoprostol and mifepristone, are the only drugs recommended in the American College of Obstetricians and Gynecologists guidelines for treating a patient after an early pregnancy loss. The other miscarriage treatment is a procedure described as surgical uterine evacuation to remove the pregnancy tissue — the same approach as for an abortion.

“The challenge is that the treatment for an abortion and the treatment for a miscarriage are exactly the same,” said Dr. Sarah Prager, a professor of obstetrics and gynecology at the University of Washington in Seattle and an expert in early pregnancy loss.

Miscarriages occur in roughly 1 out of 10 pregnancies. Some people experience loss of pregnancy at home and don’t require additional care, other than emotional support, said Dr. Tony Ogburn, who chairs the OB-GYN department at the University of Texas-Rio Grande Valley School of Medicine. But in other situations, he said, providers may need to intervene to stop bleeding and make sure no pregnancy tissue remains, as a guard against infection.

Dr. Lauren Thaxton, an OB-GYN and assistant professor at the Dell Medical School at the University of Texas-Austin, has already heard about local patients who have been miscarrying, and couldn’t get a pharmacy to fill their misoprostol prescription. “The pharmacy has said, ‘We don’t know whether or not you might be using this medication for the purposes of abortion,’” she said.

Thaxton, who supervises the obstetrics-gynecology residents who have seen these patients, said sometimes the prescribing clinic will intervene, but it takes the patient longer to get the medication. Other times patients don’t report the problem and miscarry on their own, she said, but without medication they risk additional bleeding.

Under another new Texas abortion law, someone who “aids or abets” an abortion after cardiac activity can be detected, typically around six weeks, can be subject to at least a $10,000 fine per occurrence. Anyone can bring that civil action, posing a quandary for physicians and other providers. How do they follow the latest guidelines when other people — from medical professionals to friends and family members — can question their intent: Are they helping care for a miscarriage or facilitating an abortion?

Sometimes patients don’t realize that they have lost the pregnancy until they come in for a checkup and no cardiac activity can be detected, said Dr. Emily Briggs, a family physician who delivers babies in New Braunfels, Texas. At that point, the patient can opt to wait until the bleeding starts and the pregnancy tissue is naturally released, Briggs said. For some, that’s too difficult, given the emotions surrounding the pregnancy loss, she said. Instead, the patient may choose medication or a surgical evacuation procedure, which Briggs said may prove necessary anyway to avoid a patient becoming septic if some of the tissue remains in the uterus.

But now in Texas, the new laws are creating uncertainties that may deter some doctors and other providers from offering optimal miscarriage treatment.

These situations can create significant moral distress for patients and providers, said Bryn Esplin, a bioethicist and assistant professor of medical education at the University of North Texas Health Science Center in Fort Worth. “Any law that creates a hesitancy for physicians to uphold the standard of care for a patient has a cascade of harmful effects both for the patient but also for everyone else,” said Esplin.

It’s an emotional and legal dilemma that potentially faces not just obstetricians and midwives, but also family physicians, emergency physicians, pharmacists, and anyone else who might become involved with pregnancy care. And Ogburn, who noted that he was speaking personally and not for the medical school, worries that fears about the Texas laws have already delayed care.

“I wouldn’t say this is true for our practice,” he said. “But I have certainly heard discussion among physicians that they’re very hesitant to do any kind of intervention until they’re absolutely certain that this is not possibly a viable pregnancy — even though the amount of bleeding would warrant intervening because it’s a threat to the mother’s life.”

John Seago, legislative director for Texas Right to Life, described this type of hesitation as “an awful misunderstanding of the law.” Even before the passage of the two bills, existing Texas law stated that the act is not an abortion if it involves the treatment of an ectopic pregnancy — which most commonly occurs when the pregnancy grows in the fallopian tube — or to “remove a dead, unborn child whose death was caused by spontaneous abortion,” he said, pointing to the statute. Another area of Texas law that Seago cited provides an exception to the state’s abortion restrictions if the mother’s life is in danger or she’s at “serious risk of substantial impairment of a major bodily function” unless an abortion is performed.

“It is a pro-life position to allow physicians to make those life-and-death decisions,” Seago said. “And that may mean in certain circumstances protecting the mother in this situation and the child passing away.”

But interpretation of the laws is still causing challenges to care. At least several OB-GYNs in the Austin area received a letter from a pharmacy in late 2021 saying it would no longer fill the drug methotrexate in the case of ectopic pregnancy, citing the recent Texas laws, said Dr. Charlie Brown, an Austin-based obstetrician-gynecologist who provided a copy to KHN. Methotrexate also is listed in the Texas law passed last year.

Ectopic pregnancy develops in an estimated 2% of reported pregnancies. Methotrexate or surgery are the only two options listed in the medical guidelines to prevent the fallopian tubes from rupturing and causing dangerous bleeding.

“Ectopic pregnancies can kill people,” said Brown, a district chair for the American College of Obstetricians and Gynecologists, representing Texas.

Tom Mayo, a professor of law at Southern Methodist University’s Dedman School of Law in Dallas, understands why some in Texas’ pharmacy community might be nervous. “The penalties are quite draconian,” he said, noting that someone could be convicted of a felony.

However, Mayo said that his reading of the law allows for the use of methotrexate to treat an ectopic pregnancy. In addition, he said, other Texas laws and the Roe v. Wade decision provide an exception to permit abortion if a pregnant person’s life is in danger.

Since the Texas laws include a stipulation that there must be intent to induce an abortion, Mayo said that he’d advise physicians and other clinicians to closely document the rationale for medical care, whether it’s to treat a miscarriage or an ectopic pregnancy.

But Prager believes that the laws in Texas — and perhaps elsewhere soon — could boost physicians’ vulnerability to medical malpractice lawsuits. Consider the patient whose miscarriage care is delayed and develops a serious infection and other complications, Prager said. “And they decide to sue for malpractice,” she said. “They can absolutely do that.”

Texas providers are still adjusting to other ripple effects that affect patient care. Dr. Jennifer Liedtke, a family physician in Sweetwater, Texas, who delivers about 175 babies annually, no longer sends misoprostol prescriptions to the local Walmart. Since the new laws took effect, Liedtke said, the pharmacist a handful of times declined to provide the medication, citing the new law — despite Liedtke writing the prescription to treat a miscarriage. Walmart officials did not respond to multiple requests for comment.

Since pharmacists rotate through that Walmart, Liedtke decided to send those prescriptions to other pharmacies rather than attempt to sort out the misunderstanding anew each time.

“It’s hard to form a relationship to say, ‘Hey look, I’m not using this for an elective abortion,’” she said. “‘I’m just using this because this is not a viable pregnancy.’”

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The other question this debate hangs on: How few is too few births?

Consider the 11-bed Providence Valdez Medical Center, which brings 40 to 60 newborns into the world each year, according to Dr. John Cullen, one of several family physicians who deliver babies at the Valdez, Alaska, hospital. The next nearest obstetrics unit is a six- to seven-hour drive away, if ice and snow don’t make the roads treacherous, he said.

The hospital cross-trains its nurses so they can care for trauma and general medicine patients along with women in labor, and it invests in simulation training to keep their skills up, Cullen said. He typically stays on-site, checking regularly as labor progresses, just a few steps away if concerns arise.

If the measure is the number of deliveries, “I do think that obviously there’s too small and we’re probably at that limit of low volume,” Cullen said. “I don’t think that we really have a choice. So, we just have to be really good at what we do.”

Some researchers have raised concerns based on their findings that hospitals with few deliveries are more likely to experience problems with those births. Meanwhile, “maternity deserts” are becoming more common. From 2004 to 2014, 9% of rural U.S. counties lost all hospital obstetric services, leaving slightly more than half of rural counties without any, according to a study published in 2017 in the journal Health Affairs. Yet shutting down the obstetrics unit doesn’t stop babies from arriving, either in the emergency room or en route to the next closest hospital. In addition, women may have to travel farther for prenatal care if there’s no local maternity unit.

Clinician skills and confidence suffer without sufficient practice, said Dr. Nancy Dickey, a family physician and executive director of the Texas A&M [University] Rural and Community Health Institute in College Station. So, what is that minimum threshold for baby deliveries? “I don’t have a number for you,” she said.

Dickey and Cullen are not alone in their reluctance to set a metric. For instance, the American College of Obstetricians and Gynecologists has published a position statement about steps that rural and other low-volume facilities can take to maintain clinician skills and patient safety, including conducting frequent drills and periodically rotating health providers to higher-volume facilities to gain experience. But when asked to define “low volume,” a spokesperson wrote in an email: “We intentionally don’t define a specific number for low-volume because we do not want to create an inaccurate misperception that less volume equals less quality.”

Neither does the American Academy of Family Physicians provide guidance on what constitutes too few deliveries for safe operation. The academy “has not specified a minimum of deliveries required to maintain high quality obstetrical care in rural and underserved communities due to the unique and multifaceted nature of each case in each community,” according to a written comment from the group’s president, Dr. Sterling Ransone Jr.

One challenge in sorting out any connection between the number of deliveries and safety is that the researchers use differing cutoffs for what qualifies as a hospital with a low number of births, said Katy Kozhimannil, a professor at the University of Minnesota School of Public Health who studies rural maternal health. Plus, such data-driven analyses don’t reflect local circumstances, she said. The income level of local women, their health risk factors, the distance to the closest hospital with an obstetrics unit, hospitals’ ability to keep trained doctors and nurses — hospital leaders must consider these and other factors as they watch their birth numbers fall due to declining local population or pregnant women opting to deliver at more urban high-tech hospitals, she said.

Research on birth volumes and outcomes has been mixed, but the “more consistent” finding is that hospitals with fewer deliveries are more likely to have complications, largely because of a lack of dedicated obstetric doctors and nurses, as well as potentially fewer resources for emergencies, such as blood banks, according to the authors of a 2019 federal report on improving rural maternity care. A study cited in the report, published in 2015 in the American Journal of Obstetrics & Gynecology, found that women are three times as likely to hemorrhage after delivery in rural hospitals with the lowest number of deliveries — defined as between 50 and 599 annually — as in those with 1,700 or more.

Just 7.4% of U.S. babies are born at hospitals that handle 10 to 500 births annually, according to a geographic analysis published last month in JAMA Network Open. But those hospitals, which researchers described as low volume, are 37% of all U.S. hospitals that deliver babies.

Finances also influence these decisions, given that half of all rural births are paid for by Medicaid, which generally reimburses providers less than private insurance. Obstetrics is “referred to as a loss leader by hospital administrators,” Kozhimannil said. As births dwindle, it can become daunting to pay for clinicians and other resources to support a service that must be available 24/7, she said. “Most hospitals will operate in the red in their obstetrics for a very long time, but at some point it can become really difficult.”

If a hospital closes its unit, most likely fewer local women will get prenatal care, and conditions like a mother’s severe anemia or a baby’s breech position will be missed, Dickey said. “Not getting prenatal care increases the risks, wherever this patient delivers.”

One Texas A&M initiative will enable its family medicine residency program to use telemedicine and periodic in-person visits to get more prenatal care to pregnant women in rural Texas, Dickey said. “What we really want are healthy mamas and healthy babies,” she said.

The rural institute Dickey leads also plans to use a mobile unit to provide maternal simulation training to emergency room clinicians at 11 rural Texas hospitals, only three of which provide obstetrics. “But all of them catch babies now and then in their ER,” said Dickey.

In Valdez, Alaska, keeping the hospital’s unit open has paid off for residents in other ways, Cullen said. Since the hospital delivers babies, including by cesarean section, there’s work to support a nurse anesthetist in the community of slightly more than 4,000 people. That enables the hospital to handle trauma calls and, more recently, the complexities of treating covid-19 patients, he said.

In her ongoing research, Kozhimannil remains committed to nailing down a range at which deliveries have dropped low enough to signal that a hospital needs “either more resources or more training because safety could be at risk.” Not to shutter the obstetrics unit, she stressed. But rather to automatically qualify that hospital for more support, including extra financing through state and federal programs given that it’s taxpayers that foot the bill for delivery complications, she said.

Because women will keep getting pregnant, Kozhimannil said, even if a hospital or a doctor decides to stop providing obstetric services. “That risk does not go away,” she said. “It stays in the community. It stays with the people, especially those that are too poor to go other places.”

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

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