Bassan slept sitting up because it hurt to lie down, and she would flinch at the slightest touch.

“I remember thinking I was losing my mind,” said Bassan, 43. “One time I was in so much pain that I had to take off my top, and then my cat’s tail brushed against my back. I screamed.”

Mastectomies are lifesaving surgeries that remove a patient’s breasts to treat breast cancer, which affects over their lifetimes, according to the American Cancer Society. Some women also undergo mastectomies as a preventive measure after a genetic test shows they have an increased risk for breast cancer.

In the months following surgery, many women are afflicted by , or PMPS, which spans from uncomfortable to disabling and can last years.

Yet PMPS is inconsistently diagnosed and treated, leaving women like Bassan in agony as they hunt for relief and struggle to find doctors who take their pain seriously, according to a 麻豆女优 Health News review of peer-reviewed research studies and interviews with pain specialists, surgeons, patients, and patient advocates.

Another problem is that PMPS is poorly defined, which contributes to the wide range of estimates for how common it is, reaching as high as more than 50% of mastectomy patients, according to studies. Even the low-end estimates, around 10%, would amount to tens of thousands of women.

PMPS care could improve if lawmakers pass the Advancing Women’s Health Coverage Act, which was introduced in October to ensure insurance coverage听after breast cancer treatment, including preventive mastectomies. The bill, which does not mention PMPS by name, covers complications including chronic pain. More research would help, but pain research has long been fractured across several and, more recently, has been undermined by the administration of President Donald Trump, who last year proposed deep cuts to research funding at the National Institutes of Health. After Congress rejected those cuts earlier this year, the White House slowed the release of NIH grant money, hindering ongoing and future scientific research.

“I’ve known women who’ve had chronic pain 鈥� itching, burning, stabbing pain 鈥� for years after mastectomies,” said Kathy Steligo, an on breast cancer who said she has spoken with hundreds of patients. “Of all the problems, that is probably the one least talked about by surgeons.”

Four mastectomy patients interviewed by 麻豆女优 Health News told similar stories. In separate interviews, patients said their presurgery consultations did not raise the possibility of post-mastectomy pain syndrome, although each said they had signed forms that may have disclosed the chance of this complication. All said that they felt blindsided by the chronic pain, and some said their doctors dismissed their symptoms.

“Women don’t know about this, and when they have complications, the doctors act like it is so rare, like they’re so baffled,” Bassan said. “But this is statistically predictable.”

Jennifer Drubin Clark, 42, struggled with pain after her mastectomy in 2018, and it worsened after reconstructive breast surgery in 2019.

But her surgeon seemed to focus only on the appearance of her breast implants, she said.

“I couldn’t play the piano. I wanted to blow-dry my hair, but I couldn’t hold my arm above my head for more than two seconds. I couldn’t hold my kids,” Clark said. “Everything made me cry.”

Pain Often Dismissed

Breast cancer survival rates have steadily increased since the 1980s thanks to improved cancer screening, genetic testing, better treatments, and a rise in mastectomy surgeries.

Post-mastectomy pain syndrome is a consequence of that success, according to recent research papers from anesthesiologists at Baylor University in Texas and surgeons in Chicago and New York. Both papers called for an increased focus on PMPS so that breast cancer patients can not only live longer but live well.

“In the past, when concern was predominantly on patient survival, this pain was often considered acceptable,” plastic surgeons Jonathan Bank and Maureen Beederman wrote in , adding that mastectomies and other breast surgeries “should be considered truly successful only if patients are pain-free.”

Treatment for post-mastectomy pain has a long way to go, said anesthesiologist Sean Mackey, who leads the pain medicine division at Stanford University. Mackey said this “undertreated” condition has no consistent definition for diagnosis, no standardized screening, and no treatment approved by the Food and Drug Administration.

Even the name is a misnomer, Mackey said, since the same pain can arise among women who’ve had other procedures, including lumpectomies and lymph node surgeries.

“The condition was historically dismissed,” Mackey said. “Basically women were told: 鈥榊ou’re lucky to be alive. Some pain is expected. Suck it up and deal with it.’”

“That attitude has been slow to change,” he said.

Bank, a New York surgeon who focused on post-mastectomy pain, said the pain is believed to be triggered by nerves that are severed during surgery and then left that way.

The nerves can be sutured back together to minimize pain, Bank said, but most breast surgeons haven’t been trained to do this. So it is not surprising, he said, that some patients say their surgeons were dismissive of their pain after mastectomies.

“When doctors don’t have an answer or don’t know the solution, the easiest thing to do is say there is no problem,” Bank said.

PMPS has been documented among cancer patients since the 1970s. Although the condition does not have an official definition, many researchers describe it as frequent pain in the chest, shoulder, arm, or armpit lasting at least three months after surgery.

Mastectomies intended to prevent breast cancer have become more common among women with elevated risks, including genetic mutations and a family history of the disease.

Bassan’s grandmother died of breast cancer when she was 40. After her father died of cancer in 2023, a genetic test showed that she was at risk. Grieving and afraid, Bassan sought a preventive mastectomy without hesitation, she said.

Bassan said she was also inspired by actor Angelina Jolie, who disclosed her own preventive mastectomy in a in The New York Times. Her account had such a significant impact on rates of genetic testing and preventive mastectomies that medical researchers have studied what they call the “.”

“I was really swayed by that,” Bassan said. “She made it sound, in a way, quite effortless.”

The aftermath of Bassan’s surgery was far worse than she expected. Using a computer for hours triggered paralyzing pain, so she lost her job and has been out of work for more than a year. Prescription pills dulled the pain but left her in a fog, she said. Desperate, she consulted with multiple doctors until one suggested a nerve stimulation machine, which provided fleeting relief.

About nine months after her mastectomy, a breast reconstruction surgery lessened Bassan’s pain, although she said it still returns in occasional waves. Even though her surgeries were covered by insurance, Bassan estimated her pain has cost her more than $200,000 in lost wages and drained savings.

“I did not expect to pay this price to have this surgery,” Bassan said. “I don’t know if it was worth it.”

Other women have no real choice.

No 鈥楪old Standard’ Solution

Jeni Golomb, 48, was diagnosed with stage 2 cancer in both breasts in 2023 and had a double mastectomy as soon as she could.

Doctors made boilerplate disclosures of possible complications, Golomb said, but she never heard the words “post-mastectomy pain syndrome” until after she had it.

Golomb now manages her chronic pain by taking 1,500 milligrams a day of gabapentin, an anti-seizure drug that can also be used to treat nerve pain. Golomb said she expects to take the drug for years. If she misses a dose, her pain comes roaring back.

“It was the worst pain I ever felt,” Golomb said. “I labored to 10 centimeters, unmedicated, with one of my children, and that was not as bad as this. It was excruciating.”

Gabapentin has proved effective at helping some mastectomy patients with stubborn pain, while others have responded to electrodes implanted in their spinal column, according to , published in 2024.

But that study also said there is “no current gold standard” for how to treat post-mastectomy pain and a scarcity of high-level evidence for what treatments are effective.

Baylor anesthesiologist Krishna Shah, who co-authored the report, said many patients eventually find a helpful treatment, but it often takes “a bit of trial and error” to identify what works for each.

And sometimes they never find it.

Susan Dishell, 67, said that after her 2017 mastectomy for breast cancer and reconstruction surgery, she struggled for five years with pain in both shoulders, plus a burning sensation that her medical records identified as nerve pain.

Another surgery swapped out her breast implants to erase her shoulder pain in 2022, Dishell said, but doctors warned her then that her other pain was unlikely to improve.

Since then, she has tried prescription drugs, steroid injections, CBD oil, acupuncture, physical therapy, and chiropractor treatments.

None of it worked, she said, so she stopped trying.

“I have not slept through the night since I’ve had this,” Dishell said. “But it’s OK. It’s not the most terrible price to pay to not have breast cancer.”

麻豆女优 Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at 麻豆女优鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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This story can be republished for free (details).

Billing mistakes. Stigma. Doctors who aren’t keeping up with the latest research. Those are just some of the hurdles that keep HIV prevention medication out of reach for many Americans.

The Centers for Disease Control and Prevention estimates more than 2 million Americans could benefit from a treatment known as PrEP, but only a quarter of them are getting a form of the drug. Zach Dyer appeared on WAMU’s “Health Hub” on Feb. 4 to share tips patients can use to avoid those pitfalls and find a doctor who knows more about PrEP.

麻豆女优 Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at 麻豆女优鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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Al caer la bicicleta, extendió el brazo izquierdo para amortiguar la caída. No parecía un accidente grave, pero “no podía levantarme”.

En la sala de emergencias, las radiografías mostraron que se había fracturado la cadera, que requirió cirugía, y el hombro. Klein, quien es dentista, volvió a trabajar tres semanas después, usando un bastón. Después de unos seis meses y mucha fisioterapia, se sintió bien.

Pero se quedó pensando en el daño que le había causado la caída. “Se supone que una persona de 52 años no se rompe la cadera y el hombro”, dijo. En una visita de seguimiento con su traumatólogo, dijo: “Quizás debería hacerme una densitometría ósea”.

Como sospechaba, la prueba reveló que había desarrollado osteoporosis, una enfermedad progresiva que empeora con la edad, debilita los huesos y puede provocar fracturas graves. Klein comenzó de inmediato un tratamiento farmacológico y, ahora con 70 años, continúa tomándolo.

La osteoporosis es mucho más común en mujeres, para quienes las pautas médicas recomiendan la , por lo que un hombre que no fuera profesional de salud podría no haber considerado una densitometría. El traumatólogo no mencionó la posibilidad.

Pero aproximadamente hombres mayores de 50 sufrirá una fractura vinculada a la osteoporosis, y entre los adultos mayores, aproximadamente de las fracturas de cadera ocurren en hombres.

Y cuando se presenta, “los hombres tienen peores pronósticos”, afirmó la doctora Cathleen Colon-Emeric, geriatra del Sistema de Atención Médica de Veteranos de Durham y de la Universidad de Duke, y autora principal de un estudio reciente sobre el tratamiento de la osteoporosis en veteranos varones.

“Los hombres no se recuperan tan bien como las mujeres”, afirmó, con tasas más altas de mortalidad (entre el 25% y el 30% en un año), discapacidad y hospitalizaciones. “Un hombre de 50 años tiene más probabilidades de morir por complicaciones de una fractura osteoporótica mayor que por cáncer de próstata”, agregó.

(驴Qué se considera “mayor”? Fracturas de muñeca, cadera, fémur, húmero, pelvis o vértebra).

En su de entre 65 y 85 años, realizado en centros de salud del Departamento de Asuntos de Veteranos de Carolina del Norte y Virginia, solo el 2% de los asignados al grupo de control se había sometido a una densitometría ósea.

“Sorprendentemente bajo”, afirmó Douglas Bauer, epidemiólogo clínico e investigador de osteoporosis en la Universidad de California en San Francisco, quien publicó un en JAMA Internal Medicine. “Pésimo. Y eso en el Departamento de Asuntos de Veteranos, donde lo financia el gobierno”. Pero la creación de un servicio de salud ósea, supervisado por una enfermera que registraba las indicaciones, enviaba recordatorios frecuentes de citas y explicaba los resultados, produjo cambios drásticos en el grupo de intervención, que presentaba al menos un factor de riesgo para la afección.

El 49% de ellos aceptó una ecografía. La mitad de los examinados presentaba osteoporosis o una afección previa, llamada osteopenia. Cuando correspondía, la mayoría comenzó a tomar medicamentos para preservar o reconstruir sus huesos.

“Nos sorprendió gratamente que tantos aceptaran hacerse la prueba y estuvieran dispuestos a iniciar el tratamiento”, afirmó Colon-Emeric.

Después de 18 meses, la densidad ósea había aumentado ligeramente en el grupo de intervención, que siguió mejorando sus tratamientos farmacológicos, comparado con los pacientes con osteoporosis de ambos sexos en condiciones reales.

El estudio no se prolongó lo suficiente como para determinar si la densidad ósea aumentó aún más o si las fracturas disminuyeron, pero los investigadores planean un análisis secundario para realizar un seguimiento.

Los resultados reavivan una pregunta de larga data: dado lo trascendentales e incluso mortales que pueden ser estas fracturas, y la disponibilidad de medicamentos eficaces para ralentizar o revertir la pérdida ósea, 驴deberían los hombres mayores someterse a pruebas de detección de osteoporosis, al igual que las mujeres? De ser así, 驴a qué hombres y cuándo?

Estos problemas eran menos importantes cuando la esperanza de vida era más corta, explicó Bauer. Los hombres tienen huesos más grandes y gruesos, y tienden a desarrollar osteoporosis entre cinco y diez años después que las mujeres. “Hasta hace poco, esos hombres morían de enfermedades cardíacas y por fumar” antes de que la osteoporosis pudiera perjudicarlos, afirmó.

“Ahora, los hombres viven en general hasta los 70 y 80 años, por lo que sufren fracturas”, dijo. Para entonces, también han acumulado otras enfermedades crónicas que afectan su capacidad de recuperación.

Con las pruebas y el tratamiento de la osteoporosis, “un hombre podría observar una clara mejora en la mortalidad y, lo que es más importante, en su calidad de vida”, afirmó Bauer.

Sin embargo, tanto los pacientes como muchos médicos todavía tienden a considerar la osteoporosis como una enfermedad propia de las mujeres. “Hay algo así como una idea de Superman”, dijo Eric Orwoll, endocrinólogo e investigador de osteoporosis en la Oregon Healt & Science University.

“A los hombres les gusta creer que son indestructibles, por lo que no se le presta a la factura la importancia que que debería tener”, añadió.

Un paciente, por ejemplo, se resistió durante años a las súplicas de su esposa, una enfermera, de que “visitara a alguien” por su espalda visiblemente encorvada.

Bob Grossman, de 74 años, maestro de escuela pública retirado de Portland, decidió corregir su postura y se dijo a sí mismo que debía enderezarse. “Pensé: 鈥楴o puede ser osteoporosis, soy un hombre'”, dijo. Pero era.

Otro obstáculo para las pruebas de detección: “Las guías de práctica clínica son muy diversas”, dijo el Dr. Colon-Emeric.

Asociaciones profesionales como la Sociedad Endócrina y la Sociedad Americana para la Investigación Ósea y Mineral recomiendan que los hombres mayores de 50 años con un factor de riesgo, y todos los hombres de más de 70, .

Sin embargo, el y el de Estados Unidos han considerado que la evidencia para las pruebas de detección en hombres es “insuficiente”.

Los ensayos clínicos han descubierto que los medicamentos para la osteoporosis en hombres, al igual que en mujeres, pero la mayoría de los estudios en hombres han sido demasiado pequeños o no han tenido suficiente seguimiento para demostrar si las fracturas también disminuyeron.

La postura del grupo de trabajo significa que Medicare y muchas aseguradoras privadas generalmente no cubrirán las pruebas de detección para hombres que no han tenido una fractura, aunque sí cubren la atención para hombres diagnosticados con osteoporosis.

“Las cosas han estado estancadas durante décadas”, dijo Orwoll.

Por lo tanto, puede que los pacientes varones mayores sean los que pregunten a sus médicos sobre una densitometría ósea, ampliamente disponible a un costo de entre $100 y $300. De lo contrario, dado que la osteoporosis suele ser asintomática, los hombres (y las mujeres, que también reciben pocas pruebas y tratamientos) no saben que sus huesos se han deteriorado hasta que se fracturan.

“Si sufrió una fractura después de los 50 años, debería hacerse una densitometría ósea; es uno de los indicadores clave”, aconsejó Orwoll.

Otros factores de riesgo: caídas, antecedentes familiares de fracturas de cadera y una larga lista de otras afecciones, como artritis reumatoide, hipertiroidismo y enfermedad de Parkinson. Fumar y el consumo excesivo de alcohol también aumentan las probabilidades de padecer osteoporosis.

“Varios medicamentos también afectan la densidad ósea”, explicó Colon-Emeric, en particular los esteroides y los medicamentos contra el cáncer de próstata. Cuando una ecografía revela osteoporosis, dependiendo de su gravedad, los médicos pueden recetar medicamentos orales como Fosamax o Actonel, formulaciones intravenosas como Reclast, autoinyecciones diarias de Forteo o Tymlos, o inyecciones semestrales de Prolia.

Cambios en el estilo de vida, como hacer ejercicio, tomar suplementos de calcio y vitamina D, dejar de fumar y beber con moderación, ayudarán, pero no son suficientes para detener o revertir la pérdida ósea, afirmó Colon-Emeric.

Aunque las directrices no lo recomiendan universalmente, al menos no todavía, le gustaría que todos los hombres mayores de 70 años se sometieran a las pruebas de detección, ya que las probabilidades de discapacidad después de una fractura de cadera son muy altas (dos tercios de las personas mayores no recuperarán su movilidad previa, indicó) y los medicamentos que la tratan son eficaces y, a menudo, económicos.

Sin embargo, informar a los pacientes y profesionales de salud de que la osteoporosis también amenaza a los hombres ha avanzado “a de tortuga”, afirmó Orwoll.

听Klein recuerda haber asistido a un seminario para instruir a pacientes como él en el uso del medicamento Forteo. “Era el único hombre”, dijo.

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As the bike toppled, he thrust out his left arm to break the fall. It didn’t seem like a serious accident, yet “I couldn’t get up,” he said.

At the emergency room, X-rays showed that he had fractured both his hip, which required surgical repair, and his shoulder. Klein, a dentist, went back to work in three weeks, using a cane. After about six months and plenty of physical therapy, he felt fine.

But he wondered about the damage the fall had caused. “A 52-year-old is not supposed to break a hip and a shoulder,” he said. At a follow-up visit with his orthopedist, “I said, 鈥楳aybe I should have a bone density scan.’”

As Klein suspected, the test showed he had developed osteoporosis, a progressive condition, increasing sharply with age, that thins and weakens bones and can lead to serious fractures. Klein immediately began a drug regimen and, now 70, remains on one.

Osteoporosis occurs so much more commonly in women, for whom medical guidelines recommend , that a man who was not a health care professional might not have thought about getting a scan. The orthopedist didn’t raise the prospect.

But about will suffer an osteoporotic fracture in their remaining years, and among older adults, about .

When they do, “men have worse outcomes,” said Cathleen Colón-Emeric, a geriatrician at the Durham VA Health Care System and Duke University and the lead author of a recent study of osteoporosis treatment in male veterans.

“Men don’t do as well in recovery as women,” she said, with (25% to 30% within a year), disability and institutionalization. “A 50-year-old man is more likely to die from the complications of a major osteoporotic fracture than from prostate cancer,” she said.

(What’s “major”? Fractures of the wrist, hip, femur, humerus, pelvis or vertebra.)

In her ages 65 to 85, conducted at Veterans Affairs health centers in North Carolina and Virginia, only 2% of those assigned to the control group had undergone bone-density screening.

“Shockingly low,” said Douglas Bauer, a clinical epidemiologist and osteoporosis researcher at the University of California-San Francisco, who published in JAMA Internal Medicine. “Abysmal. And that’s at the VA, where it’s paid for by the government.”

But establishing a bone health service 鈥� overseen by a nurse who entered orders, sent frequent appointment reminders and explained results 鈥� led to dramatic changes in the intervention group, who had at least one risk factor for the condition.

Forty-nine percent of them said yes to a scan. Half of those tested had osteoporosis or a forerunner condition, osteopenia. Where appropriate, most of them began medications to preserve or rebuild their bones.

“We were pleasantly surprised that so many agreed to be screened and were willing to initiate treatment,” Colón-Emeric said.

After 18 months, bone density had increased modestly for those in the intervention group, who were more likely to stick to their drug regimens than osteoporosis patients of either sex in real-world conditions.

The study didn’t continue long enough to determine whether bone density increased further or fractures declined, but the researchers plan a secondary analysis to track that.

The results revive a longtime question: Given how life-altering, even deadly, such fractures can be, and the availability of effective drugs to slow or reverse bone loss, should older men be screened for osteoporosis, as women are? If so, which men and when?

Such issues mattered less when life spans were shorter, Bauer explained. Men have bigger and thicker bones and tend to develop osteoporosis five to 10 years later than women do. “Until recently, those men died of heart disease and smoking” before osteoporosis could harm them, he said.

“Now, men routinely live into their 70s and 80s, so they have fractures,” he added. By then, they have also accumulated other chronic conditions that impair their ability to recover.

With osteoporosis testing and treatment, “a man could see a clear-cut improvement in mortality and, more importantly, his quality of life,” Bauer said.

Both patients and many doctors still tend to regard osteoporosis as a women’s disease, however. “There’s a bit of a Superman idea,” said Eric Orwoll, an endocrinologist and osteoporosis researcher at Oregon Health & Science University.

“Men would like to believe they’re indestructible, so a fracture doesn’t have the implication that it should,” he added.

One patient, for example, for years resisted entreaties from his wife, a nurse, to “see someone” about his visibly rounded upper back.

Bob Grossman, 74, a retired public school teacher in Portland, blamed poor posture instead and told himself to straighten up. “I thought, 鈥業t can’t be osteoporosis 鈥� I’m a guy,’” he said. But it was.

Another obstacle to screening: “Clinical practice guidelines are all over the place,” Colón-Emeric said.

Professional associations like the Endocrine Society and the American Society for Bone and Mineral Research recommend that men 50 and older who have a risk factor, and all men over 70, .

But the and the have deemed the evidence for screening of men “insufficient.” Clinical trials have found that osteoporosis , as in women, but most male studies have been too small or lacked enough follow-up to show whether fractures also declined.

The task force’s position means that Medicare and many private insurers generally won’t cover screening for men who haven’t had a fracture, though they will cover care for men diagnosed with osteoporosis.

“Things have been stalled for decades,” Orwoll said.

So it may fall to older men themselves to ask their doctors about a DXA (pronounced DECKS-ah) scan, widely available at $100 to $300 out-of-pocket. Otherwise, because osteoporosis is typically asymptomatic, men (and women, who are also undertested and undertreated) don’t know their bones have deteriorated until one breaks.

“If you had a fracture after age 50, you should have a bone scan 鈥� that’s one of the key indicators,” Orwoll advised.

Other risk factors: falls, a family history of hip fractures, and a fairly long list of other health conditions including rheumatoid arthritis, hyperthyroidism and Parkinson’s disease. Smoking and excessive alcohol use increase the odds of osteoporosis as well.

“A number of medications also do a number on your bone density,” Colón-Emeric added, notably steroids and prostate cancer drugs.

When a scan reveals osteoporosis, depending on its severity, doctors may prescribe oral medications like Fosamax or Actonel, intravenous formulations like Reclast, daily self-injections of Forteo or Tymlos, or twice-annual injections of Prolia.

Lifestyle changes like exercising, taking calcium and vitamin D supplements, stopping smoking, and drinking only moderately will help but aren’t sufficient to stop or reverse bone loss, Colón-Emeric said.

Although guidelines don’t universally recommend it, at least not yet, she would like to see all men age 70 and up be screened, because the odds of disability after hip fractures are so high 鈥� two-thirds of older people will not regain their prior mobility, she noted 鈥� and the medications that treat it are effective and often inexpensive.

But that osteoporosis threatens men, too, has progressed “at a snail’s pace,” Orwoll said.

Klein remembers attending a seminar to instruct patients like him in using the drug Forteo. “I was the only male there,” he said.

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Health Care Helpline helps you navigate the hurdles between you and good health care. 麻豆女优 Health News reporter Jackie Fortiér spoke with NPR’s Ari Shapiro about a Minnesota family facing big bills for their infant son’s hearing tests.

“My son was diagnosed with congenital CMV, a virus that can cause hearing loss. As part of this diagnosis, he will be required to have routine hearing tests every few months until he is 10 years old. I reached out to you because I wanted to know why my son’s hearing tests weren’t covered by our insurance and why we needed to pay for it.”

鈥� Anna Deutscher, 29, from Minnesota, writing about her infant son, Beckham

Trying to figure out why her claim was denied took Anna Deutscher a lot of time and work.

Baby Beckham’s hearing screenings were preventive care, which is supposed to be covered by law. Every hearing test cost them about $350 out-of-pocket. Between those bills and Beckham’s other health costs, the family maxed out two credit cards.

“Everything just immediately goes right to trying to pay that debt off,” Deutscher said.

At times, she felt overwhelmed by her son’s medical needs, on top of working. Deutscher said she “didn’t know what else to do” when her insurance company kept saying no to her requests that it pay for the hearing tests.

No one wants to spend time fighting their health insurance company. Many people feel they don’t have the knowledge or stamina to do it. But if, like Deutscher, you’re denied for a preventive service, it may be worth it.

Here are a few tips 鈥� a slingshot and a few stones, so you can be David when facing a health care Goliath.

1. Check your policy.

Read your plan documents to confirm whether the treatment or service is covered. Pay attention to any exclusions or limitations. Deutscher’s plan documents say hearing tests are not covered. But even when a sought-after benefit is excluded, that might not be the end of the line.

2. Is the service preventive?

Many types of preventive care are supposed to be covered without additional cost under the Affordable Care Act. If you receive a recommended preventive screening and have private insurance, including through the Affordable Care Act marketplace, there should be no copayment at the time of service, and you shouldn’t get a bill later. A small number of insurance plans are “grandfathered in,” which means you may not have the same rights and protections as the ACA provides. Check with your employer’s human resources benefits manager to find out for sure.

Here’s a health plans must cover and specific to children and young adults.

A physician recommended regular hearing screenings for the Deutschers’ baby, which the healthcare.gov list indicates should be considered preventive and covered by insurance. But , an insurance expert and a research professor at Georgetown University, said real life often doesn’t match what the law requires.

“It really does come down to everyone sort of being on their best behavior on the provider and plan side to truly interpret and follow what should be covered,” Volk said.

3. Peel apart the denial.

If you’ve been denied coverage, you need to know why. Health insurance companies are required to explain every denial. The denial letter or your explanation of benefits should state the reason, which may be a coverage exclusion, incorrect coding, or a determination that the service was deemed not medically necessary. Follow up and ask for specific details about the denial and the criteria used, and request an explanation of benefits. Then use that information to , being sure to address the reason for the denial.

4. File the appeal.

There are a few steps to know, but you don’t have to be a lawyer to figure them out. Usually there’s an appeal form to fill out. Visit your insurer’s website, check your explanation of benefits, or call your insurer and ask how to get started. The process typically includes writing a letter saying why you disagree with the denial. Include any medical records or test results that support your case and a copy of the federal guidelines that show the care is a covered, preventive service. If you can, ask your physician to write a letter explaining why the service is preventive and necessary.

Your insurance company has 30 to 60 days to respond, depending on your state and health plan. If your appeal is denied, try again. Some people win on the second go-round.

If your appeal is denied a second time, you can request an . That process is led by a medical professional who is supposed to make an unbiased decision. In California, for instance, many health plans fall under the jurisdiction of the Department of Managed Health Care.

“In 2023, 72% of health plan members that came to us and filed an independent medical review ended up getting the service that they requested,” said Mary Watanabe, who leads the department.

Keep deadlines in mind. How much time you have to file should be on your explanation of benefits. Your insurer is required by law to accept the external reviewer’s decision.

For more help starting an appeal or asking for an external review, visit or your .

5. Ask human resources for help.

If you get coverage through your job and you’re hitting roadblocks, consider emailing your human resources department. HR folks have contacts with the insurance companies you don’t and may save you a few calls to the 800 number on the back of your insurance card. Legally, HR is under no obligation to help, and covering a health service may not be in your employer’s financial interest. But sending HR the documents you prepared for the insurance appeal may prompt them to push the insurance company to take another look.

“The whole point of employers offering benefits is to attract and retain a solid workforce, right?” Volk said.

Making a case to HR may be a ramp toward getting the treatment or service covered the next time your company revises its health plan offerings, said , a consultant who advises businesses on medical billing.

She said consumers can do a quick online search to see whether other large insurance companies in their area cover the health care service they need. That information can give you leverage, Buckholtz said.

Going to HR helped Deutscher. Eventually, her employer said it would cover the cost of hearing tests for baby Beckham for the current plan year. Deutscher’s employer has a self-funded plan, which gives companies the ability to customize benefits. It ultimately decided to add hearing tests as a standard benefit for all employees.

“It’s been like this constant cloud hanging over my head, so for that to suddenly be lifted, it didn’t feel real. I also have never gone to my HR for something like this before. I didn’t even know this was an option,” Deutscher said.

Health Care Helpline helps you navigate the health system hurdles between you and good care. Send us your tricky question and we may tap a policy sleuth to puzzle it out. Share your story. The crowdsourced project is a joint production of NPR and 麻豆女优 Health News.

麻豆女优 Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at 麻豆女优鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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“We wanted to find out just what it’s going to do to us,” Penny Higgins said. They contacted a couple of doctors, but “we were met with a brick wall. Nobody knew anything.”

Worse still, she added, they “really didn’t want to hear about it.”

Many clinicians remain unaware of the health risks linked to PFAS, short for perfluoroalkyl and polyfluoroalkyl substances, despite rising medical and public awareness of the chemicals and their toxicity. PFAS can affect nearly every organ system and linger in bodies for decades, raising risks of cancer, immune deficiencies, and pregnancy complications.

These “forever chemicals” have been widely used since the 1950s in products including cosmetics, cookware, clothing, carpeting, food packaging, and . Researchers say they permeate water systems and soils nationwide, with a federal study estimating that at least is contaminated. PFAS can be detected in the , according to the Centers for Disease Control and Prevention.

Maine was to begin extensive water and soil testing and to try to limit further public exposure to PFAS , after discovering that farms and residences 鈥� like the Higgins’ property 鈥� had been contaminated by containing PFAS. Exposure can also be high for people living near military bases, fire training areas, landfills, or manufacturing facilities.

In regions where testing reveals , medical providers can be caught flat-footed and patients left adrift.

Rachel Criswell, a family practice doctor and environmental health researcher, is working to change that. She was completing her residency in Central Maine around the time that the Higginses and others there began discovering the extent of the contamination. Her medical training at Columbia University included more than a year in Norway researching the effects of PFAS and other chemicals on maternal and infant health.

When patients began asking about PFAS, Criswell and the state toxicologist offered primary care providers lunchtime presentations on how to respond. Since then, she has fielded frequent PFAS questions from doctors and patients throughout the state.

Even knowledgeable providers can find it challenging to stay current given rapidly evolving scientific information and few established protocols. “The work I do is exhausting and time-consuming and sometimes frustrating,” Criswell said, “but it’s exactly what I should be doing.”

Phil Brown, a Northeastern University sociology professor and a co-director of the , said the medical community “doesn’t know a lot about occupational and environmental health,” adding that “it’s a very minimal part of the ” and continuing education.

Courtney Carignan, an environmental epidemiologist at Michigan State University, said learning of PFAS exposure, whether from their drinking water or occupational sources, “is a sensitive and upsetting situation for people” and “it’s helpful if their doctors can take it seriously.”

Clinical guidance concerning PFAS improved after the National Academies of Sciences, Engineering, and Medicine released in 2022. It found strong evidence associating PFAS with kidney cancer, high cholesterol, reduced birth weights, and lower antibody responses to vaccines, and some evidence linking PFAS to breast and testicular cancer, ulcerative colitis, thyroid and liver dysfunction, and pregnancy-induced hypertension.

That guidance “revolutionized my practice,” Criswell said. “Instead of being this hand-wavey thing where we don’t know how to apply the research, it brought a degree of concreteness to PFAS exposure that was kind of missing before.”

The national academies affirmed what Criswell had already been recommending: Doctors should order blood tests for patients with known PFAS exposures.

Testing for PFAS in blood 鈥� and for related medical conditions if needed 鈥� can help ease patients’ anxiety.

“There isn’t a day that goes by,” Lawrence Higgins said, “that we don’t think and wonder when our bodies are going to shut down on us.”

鈥楧evastating but Incredibly Helpful’

After finding out in 2021 that his family was through sludge spread on their Unity, Maine, farm decades earlier, Adam Nordell discovered that “it was exceedingly difficult” to get tested. “Our family doctor had not heard of PFAS and didn’t know what the test was,” he said. A lab technician needed coaching from an outside expert to source the test. The lab analyzing the samples had a backlog that left the family waiting three months.

“The results were devastating but incredibly helpful,” Nordell said. Their blood serum levels for PFAS were at roughly the 99th percentile nationally, far higher than their well-water levels would have predicted 鈥� indicating that additional exposure was probably coming from other sources such as soil contact, dust, and food.

Blood levels of PFAS between 2 and 20 nanograms per milliliter may be problematic, the national academies reported. In highly contaminated settings, blood levels can run upward of 150 times the 20-ng/mL risk threshold.

Nordell and his family had been planning to remain on the farm and grow crops less affected by PFAS, but the test results persuaded them to leave. “Knowledge is power,” Nordell said, and having the blood data “gave us agency.”

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The national academies’ guidance paved the way for more clinicians to . The cost, typically $400 to $600, can be prohibitive if not picked up by insurance, and not all insurers cover the testing. Deductibles and copays can also limit patients’ capacity to get tested. Less costly finger-prick tests, administered at home, appear to capture some of the more commonly found PFAS as accurately as blood serum tests, .

Maine legislators recently a bill 鈥� modeled after 鈥� that would require insurers to consider PFAS blood testing part of preventive care, but it was carried over to the next legislative session.

“In my mind, it’s a no-brainer that the PFAS blood serum test should be universally offered 鈥� at no cost to the patient,” said Nordell, who now works as a campaign manager for the nonprofit Defend Our Health. Early screening for the diseases associated with PFAS, he said, is “a humane policy that’s in the best interests of everyone involved” 鈥� patients, providers, and insurance companies.

Criswell tells colleagues in family practice that they can view elevated PFAS blood levels as a risk factor, akin to smoking. “What’s challenging as a primary care doctor is the nitty-gritty” of the testing and screening logistics, she said.

In trainings, she shares a handout summarizing the national academies’ guidance 鈥� including associated heath conditions, blood testing, clinical follow-up, and exposure reduction 鈥� to which she has added details about lab test order codes, insurance costs and coverage, and water filtration.

Criswell served on an advisory committee tasked with allocating to address PFAS contamination from past sludge-spreading in Maine. The group recommended that labs analyzing PFAS blood tests should report the results to state public health authorities.

That change, slated to take effect this summer, will allow Maine health officials to follow up with people who have high PFAS blood levels to better determine potential sources and to share information on health risks and medical screening. As with , Maine is among the first states to adopt this measure.

Screening for PFAS is falling short in many places nationwide, said Kyle Horton, an internist in Wilmington, North Carolina, and founder of the nonprofit On Your Side Health. She estimates that only about 1 in 100 people facing high PFAS exposure are getting adequate medical guidance.

Even in her , “I’m not aware of anyone who is routinely screening or discussing PFAS mitigation with their patients,” Horton said. Knowledge of local PFAS threats, she added, “hasn’t translated over to folks managing patients differently or trying to get through to that next phase of medical monitoring.”

Patients as Advocates

In heavily affected communities 鈥� including in , Maine, and 鈥� patients are pushing the medical field to better understand PFAS.

More doctors are speaking out as well. Testifying before a Maine legislative committee this year in support of a bill that would limit occupational PFAS exposure, Criswell said, “We, as physicians, who are sworn to protect the health of our patients, must pay attention to the underlying causes of the illnesses we treat and stand up for policy solutions that reduce these causes.”

Even where policy changes are instituted, the physical and psychological toll of “forever chemicals” will extend far into the future. Criswell and other Maine doctors have observed chronic stress among patients.

Nordell, the former farmer, described his family’s contamination as “deeply, deeply jarring,” an ordeal that has at times left him “unmoored from a sense of security.”

麻豆女优 Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at 麻豆女优鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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When Reardon moved from Alabama to North Carolina, she had little choice but to switch from having the screening done at an imaging center to having it done at a hospital.

Then she saw how much higher the charges were. At first, Reardon thought it was an error: “They made a mistake with billing,” she said. “They accidentally added a zero.”

It wasn’t a mistake.

In this installment of InvestigateTV and 麻豆女优 Health News’ “Costly Care” series, Caresse Jackman, InvestigateTV’s national consumer investigative reporter, and Jamie Grey, director of investigations, explore how the type of medical facility where a patient seeks care can affect the cost of that care 鈥� particularly when that facility is a hospital.

麻豆女优 Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at 麻豆女优鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

USE OUR CONTENT

This story can be republished for free (details).

After narrowly passing a budget resolution this spring foreshadowing major Medicaid cuts, Republicans in Congress are having trouble agreeing on specific ways to save billions of dollars from a pool of funding that pays for the program without cutting benefits on which millions of Americans rely. Moderates resist changes they say would harm their constituents, while fiscal conservatives say they won’t vote for smaller cuts than those called for in the budget resolution. The fate of President Donald Trump’s “one big, beautiful bill” containing renewed tax cuts and boosted immigration enforcement could hang on a Medicaid deal.

Meanwhile, the Trump administration surprised those on both sides of the abortion debate by agreeing with the Biden administration that a Texas case challenging the FDA’s approval of the abortion pill mifepristone should be dropped. It’s clear the administration’s request is purely technical, though, and has no bearing on whether officials plan to protect the abortion pill’s availability.

This week’s panelists are Julie Rovner of 麻豆女优 Health News, Anna Edney of Bloomberg News, Maya Goldman of Axios, and Sandhya Raman of CQ Roll Call.

Panelists

Among the takeaways from this week’s episode:

• Congressional Republicans are making halting progress on negotiations over government spending cuts. As hard-line House conservatives push for deeper cuts to the Medicaid program, their GOP colleagues representing districts that heavily depend on Medicaid coverage are pushing back. House Republican leaders are eying a Memorial Day deadline, and key committees are scheduled to review the legislation next week 鈥� but first, Republicans need to agree on what that legislation says.
• Trump withdrew his nomination of Janette Nesheiwat for U.S. surgeon general amid accusations she misrepresented her academic credentials and criticism from the far right. In her place, he nominated Casey Means, a physician who is an ally of HHS Secretary Robert F. Kennedy Jr.’s and a prominent advocate of the “Make America Healthy Again” movement.
• The pharmaceutical industry is on alert as Trump prepares to sign an executive order directing agencies to look into “most-favored-nation” pricing, a policy that would set U.S. drug prices to the lowest level paid by similar countries. The president explored that policy during his first administration, and the drug industry sued to stop it. Drugmakers are already on edge over Trump’s plan to impose tariffs on drugs and their ingredients.
• And Kennedy is scheduled to appear before the Senate’s Health, Education, Labor and Pensions Committee next week. The hearing would be the first time the secretary of Health and Human Services has appeared before the HELP Committee since his confirmation hearings 鈥� and all eyes are on the committee’s GOP chairman, Sen. Bill Cassidy of Louisiana, a physician who expressed deep concerns at the time, including about Kennedy’s stances on vaccines.

Also this week, Rovner interviews 麻豆女优 Health News’ Lauren Sausser, who co-reported and co-wrote the latest 麻豆女优 Health News’ “Bill of the Month” installment, about an unexpected bill for what seemed like preventive care. If you have an outrageous, baffling, or infuriating medical bill you’d like to share with us, you can do that here.

Plus, for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too:听

Julie Rovner: NPR’s “,” by Andrea Hsu.听

Maya Goldman: Stat’s “,” by Andrew Joseph.听

Anna Edney: Bloomberg News’ “,” by Zachary R. Mider and Zeke Faux.听

Sandhya Raman: The Louisiana Illuminator’s “,” by Anna Claire Vollers.听

Also mentioned in this week’s podcast:

• ProPublica’s series “,” by Kavitha Surana, Lizzie Presser, Cassandra Jaramillo, and Stacy Kranitz, and the winner of the 2025 Pulitzer Prize for public service journalism.
• The New York Times’ “,” by Margot Sanger-Katz and Sarah Kliff.
• 麻豆女优 Health News’ “Seeking Spending Cuts, GOP Lawmakers Target a Tax Hospitals Love to Pay,” by Phil Galewitz.
• Axios’ “,” by Maya Goldman.

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]听

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for 麻豆女优 Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, May 8, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So, here we go.听

Today we are joined via a videoconference by Anna Edney of Bloomberg News.听

Anna Edney: Hi, everybody.听

Rovner: Maya Goldman of Axios News.听

Maya Goldman: Great to be here.听

Rovner: And Sandhya Raman of CQ Roll Call.听

Sandhya Raman: Good morning, everyone.听

Rovner: Later in this episode we’ll have my “Bill of the Month” interview with my 麻豆女优 Health News colleague Lauren Sausser. This month’s patient got preventive care they assumed would be covered by their Affordable Care Act health plan, except it wasn’t. But first, this week’s news.听

We’re going to start on Capitol Hill, where Sandhya is coming directly from, where regular listeners to this podcast will be not one bit surprised that Republicans working on President [Donald] Trump’s one “big, beautiful” budget reconciliation bill are at an impasse over how and how deeply to cut the Medicaid program. Originally, the House Energy and Commerce Committee was supposed to mark up its portion of the bill this week, but that turned out to be too optimistic. Now they’re shooting for next week, apparently Tuesday or so, they’re saying, and apparently that Memorial Day goal to finish the bill is shifting to maybe the Fourth of July? But given what’s leaking out of the closed Republican meetings on this, even that might be too soon. Where are we with these Medicaid negotiations?听

Raman: I would say a lot has been happening, but also a lot has not been happening. I think that anytime we’ve gotten any little progress on knowing what exactly is at the top of the list, it gets walked back. So earlier this week we had a meeting with a lot of the moderates in Speaker [Mike] Johnson’s office and trying to get them on board with some of the things that they were hesitant about, and following the meeting, Speaker Johnson had said that two of the things that have been a little bit more contentious 鈥� changing the federal match for the expansion population and instituting per capita caps for states 鈥� were off the table. But the way that he phrased it is kind of interesting in that he said stay tuned and that it possibly could change.听

And so then yesterday when we were hearing from the Energy and Commerce Committee, it seemed like these things are still on the table. And then Speaker Johnson has kind of gone back on that and said, I said it was likely. So every time we kind of have any sort of change, it’s really unclear if these things are in the mix, outside the mix. When we pulled them off the table, we had a lot of the hard-line conservatives get really upset about this because it’s not enough savings. So I think any way that you push it with such narrow margins, it’s been difficult to make any progress, even though they’ve been having a lot of meetings this week.听

Rovner: One of the things that surprised me was apparently the Senate Republicans are weighing in. The Senate Republicans who aren’t even set to make Medicaid cuts under their version of the budget resolution are saying that the House needs to go further. Where did that come from?听

Raman: It’s just been a difficult process to get anything across. I mean, in the House side, a lot of it has been, I think, election-driven. You see the people that are not willing to make as many concessions are in competitive districts. The people that want to go a little bit more extreme on what they’re thinking are in much more safe districts. And then in the Senate, I think there’s a lot more at play just because they have longer terms, they have more to work with. So some of the pushback has been from people that it would directly affect their states or if the governors have weighed in. But I think that there are so many things that they do want to get done, since there is much stronger agreement on some of the immigration stuff and the taxes that they want to find the savings somewhere. If they don’t find it, then the whole thing is moot.听

Rovner: So meanwhile, the Congressional Budget Office at the request of Democrats is out with estimates of what some of these Medicaid options would mean for coverage, and it gives lie to some of these Republican claims that they can cut nearly a trillion dollars from Medicaid without touching benefits, right? I mean all of these 鈥� and Maya, your nodding.听

Goldman: Yeah.听

Rovner: All of these things would come with coverage losses.听

Goldman: Yeah, I think it’s important to think about things like work requirements, which has gotten a lot of support from moderate Republicans. The only way that that produces savings is if people come off Medicaid as a result. Work requirements in and of themselves are not saving any money. So I know advocates are very concerned about any level of cuts. I talked to somebody from a nursing home association who said: We can’t pick and choose. We’re not in a position to pick and choose which are better or worse, because at this point, everything on the table is bad for us. So I think people are definitely waiting with bated breath there.听

Rovner: Yeah, I’ve heard a lot of Republicans over the last week or so with the talking points. If we’re just going after fraud and abuse then we’re not going to cut anybody’s benefits. And it’s like 鈥� um, good luck with that.听

Goldman: And President Trump has said that as well.听

Rovner: That’s right. Well, one place Congress could recoup a lot of money from Medicaid is by cracking down on provider taxes, which 49 of the 50 states use to plump up their federal Medicaid match, if you will. Basically the state levies a tax on hospitals or nursing homes or some other group of providers, claims that money as their state share to draw down additional federal matching Medicaid funds, then returns it to the providers in the form of increased reimbursement while pocketing the difference. You can call it money laundering as some do, or creative financing as others do, or just another way to provide health care to low-income people.听

But one thing it definitely is, at least right now, is legal. Congress has occasionally tried to crack down on it since the late 1980s. I have spent way more time covering this fight than I wish I had, but the combination of state and health provider pushback has always prevented it from being eliminated entirely. If you want a really good backgrounder, I point you to in The New York Times this week by our podcast pals Margot Sanger-Katz and Sarah Kliff. What are you guys hearing about provider taxes and other forms of state contributions and their future in all of this? Is this where they’re finally going to look to get a pot of money?听

Raman: It’s still in the mix. The tricky thing is how narrow the margins are, and when you have certain moderates having a hard line saying, I don’t want to cut more than $500 billion or $600 billion, or something like that. And then you have others that don’t want to dip below the $880 billion set for the Energy and Commerce Committee. And then there are others that have said it’s not about a specific number, it’s what is being cut. So I think once we have some more numbers for some of the other things, it’ll provide a better idea of what else can fit in. Because right now for work requirements, we’re going based on some older CBO [Congressional Budget Office] numbers. We have the CBO numbers that the Democrats asked for, but it doesn’t include everything. And piecing that together is the puzzle, will illuminate some of that, if there are things that people are a little bit more on board with. But it’s still kind of soon to figure out if we’re not going to see draft text until early next week.听

Goldman: I think the tricky thing with provider taxes is that it’s so baked into the way that Medicaid functions in each state. And I think I totally co-sign on the New York Times article. It was a really helpful explanation of all of this, and I would bet that you’ll see a lot of pushback from state governments, including Republicans, on a proposal that makes severe changes to that.听

Rovner: Someday, but not today, I will tell the story of the 1991 fight over this in which there was basically a bizarre dealmaking with individual senators to keep this legal. That was a year when the Democrats were trying to get rid of it. So it’s a bipartisan thing. All right, well, moving on.听

It wouldn’t be a Thursday morning if we didn’t have breaking federal health personnel news. Today was supposed to be the confirmation hearing for surgeon general nominee and Fox News contributor Janette Nesheiwat. But now her nomination has been pulled over some questions about whether she was misrepresenting her medical education credentials, and she’s already been replaced with the nomination of Casey Means, the sister of top [Health and Human Services] Secretary [Robert F.] Kennedy [Jr.] aide Calley Means, who are both leaders in the MAHA [“Make America Healthy Again”] movement. This feels like a lot of science deniers moving in at one time. Or is it just me?听

Edney: Yeah, I think that the Meanses have been in this circle, names floated for various things at various times, and this was a place where Casey Means fit in. And certainly she espouses a lot of the views on, like, functional medicine and things that this administration, at least RFK Jr., seems to also subscribe to. But the one thing I’m not as clear on her is where she stands with vaccines, because obviously Nesheiwat had fudged on her school a little bit, and鈥斕�

Rovner: Yeah, I think she did her residency at the University of Arkansas鈥斕�

Edney: That’s where.听

Rovner: 鈥攁nd she implied that she’d graduated from the University of Arkansas medical school when in fact she graduated from an accredited Caribbean medical school, which lots of doctors go to. It’s not a sin鈥斕�

Edney: Right.听

Rovner: 鈥攁nd it’s a perfectly, as I say, accredited medical school. That was basically 鈥� but she did fudge it on her resume.听

Edney: Yeah.听

Rovner: So apparently that was one of the things that got her pulled.听

Edney: Right. And the other, kind of, that we’ve seen in recent days, again, is Laura Loomer coming out against her because she thinks she’s not anti-vaccine enough. So what the question I think to maybe be looking into today and after is: Is Casey Means anti-vaccine enough for them? I don’t know exactly the answer to that and whether she’ll make it through as well.听

Rovner: Well, we also learned this week that Vinay Prasad, a controversial figure in the covid movement and even before that, has been named to head the FDA [Food and Drug Administration] Center for Biologics and Evaluation Research, making him the nation’s lead vaccine regulator, among other things. Now he does have research bona fides but is a known skeptic of things like accelerated approval of new drugs, and apparently the biotech industry, less than thrilled with this pick, Anna?听

Edney: Yeah, they are quite afraid of this pick. You could see it in the stocks for a lot of vaccine companies, for some other companies particularly. He was quite vocal and quite against the covid vaccines during covid and even compared them to the Nazi regime. So we know that there could be a lot of trouble where, already, you know, FDA has said that they’re going to require placebo-controlled trials for new vaccines and imply that any update to a covid vaccine makes it a new vaccine. So this just spells more trouble for getting vaccines to market and quickly to people. He also鈥攜ou mentioned accelerated approval. This is a way that the FDA uses to try to get promising medicines to people faster. There are issues with it, and people have written about the fact that they rely on what are called surrogate endpoints. So not Did you live longer? but Did your tumor shrink?听

And you would think that that would make you live longer, but it actually turns out a lot of times it doesn’t. So you maybe went through a very strong medication and felt more terrible than you might have and didn’t extend your life. So there’s a lot of that discussion, and so that. There are other drugs. Like this Sarepta drug for Duchenne muscular dystrophy is a big one that Vinay Prasad has come out against, saying that should have never been approved, because it was using these kind of surrogate endpoints. So I think biotech’s pretty 鈥� thinking they’re going to have a lot tougher road ahead to bring stuff to market.听

Rovner: And I should point out that over the very long term, this has been the continuing struggle at FDA. It’s like, do you protect the public but make people wait longer for drugs or do you get the drugs out and make sure that people who have no other treatments available have something available? And it’s been a constant push and pull. It’s not really been partisan. Sometimes you get one side pushing and the other side pushing back. It’s really nothing new. It’s just the sort of latest iteration of this.听

Edney: Right. Yeah. This is the pendulum swing, back to the Maybe we need to be slowing it down side. It’s also interesting because there are other discussions from RFK Jr. that, like, We need to be speeding up approvals and Trump wants to speed up approvals. So I don’t know where any of this will actually come down when the rubber meets the road, I guess.听

Rovner: Sandhya and Maya, I see you both nodding. Do you want to add something?听

Raman: I think this was kind of a theme that I also heard this week in the 鈥� we had the Senate Finance hearing for some of the HHS [Department of Health and Human Services] nominees, and Jim O’Neill, who’s one of the nominees, that was something that was brought up by Finance ranking member Ron Wyden, that some of his past remarks when he was originally considered to be on the short list for FDA commissioner last Trump administration is that he basically said as long as it’s safe, it should go ahead regardless of efficacy. So those comments were kind of brought back again, and he’s in another hearing now, so that might come up as an issue in HELP [the Senate Committee on Health, Education, Labor and Pensions] today.听

Rovner: And he’s the nominee for deputy secretary, right? Have to make sure I keep all these things straight. Maya, you wanting to add something?听

Goldman: Yeah, I was just going to say, I think there is a divide between these two philosophies on pharmaceuticals, and my sense is that the selection of Prasad is kind of showing that the anti-accelerated-approval side is winning out. But I think Anna is correct that we still don’t know where it’s going to land.听

Rovner: Yes, and I will point out that accelerated approval first started during AIDS when there was no treatments and basically people were storming the 鈥� literally physically storming 鈥� the FDA, demanding access to AIDS drugs, which they did finally get. But that’s where accelerated approval came from. This is not a new fight, and it will continue.听

Turning to abortion, the Trump administration surprised a lot of people this week when it continued the Biden administration’s position asking for that case in Texas challenging the abortion pill to be dropped. For those who’ve forgotten, this was a case originally filed by a bunch of Texas medical providers demanding the judge overrule the FDA’s approval of the abortion pill mifepristone in the year 2000. The Supreme Court ruled the original plaintiff lacked standing to sue, but in the meantime, three states 鈥擬issouri, Idaho, and Kansas 鈥� have taken their place as plaintiffs. But now the Trump administration points out that those states have no business suing in the Northern District of Texas, which kind of seems true on its face. But we should not mistake this to think that the Trump administration now supports the current approval status of the abortion bill. Right, Sandhya?听

Raman: Yeah, I think you’re exactly right. It doesn’t surprise me. If they had allowed these three states, none of which are Texas 鈥� they shouldn’t have standing. And if they did allow them to, that would open a whole new can of worms for so many other cases where the other side on so many issues could cherry-pick in the same way. And so I think, I assume, that this will come up in future cases for them and they will continue with the positions they’ve had before. But this was probably in their best interest not to in this specific one.听

Rovner: Yeah. There are also those who point out that this could be a way of the administration protecting itself. If it wants to roll back or reimpose restrictions on the abortion pill, it would help prevent blue states from suing to stop that. So it serves a double purpose here, right?听

Raman: Yeah. I couldn’t see them doing it another way. And even if you go through the ruling, the language they use, it’s very careful. It’s not dipping into talking fully about abortion. It’s going purely on standing. Yeah.听

Rovner: There’s nothing that says, We think the abortion pill is fine the way it is. It clearly does not say that, although they did get the headlines 鈥� and I’m sure the president wanted 鈥� that makes it look like they’re towing this middle ground on abortion, which they may be but not necessarily in this case.听

Well, before we move off of reproductive health, a shoutout here to the , which was awarded the Pulitzer Prize for public service this week for its stories on women who died due to abortion bans that prevented them from getting care for their pregnancy complications. Regular listeners of the podcast will remember that we talked about these stories as they came out last year, but I will post another link to them in the show notes today.听

OK, moving on. There’s even more drug price news this week, starting with the return of, quote, “most favored nation” drug pricing. Anna, remind us what this is and why it’s controversial.听

Edney: Yeah. So the idea of most favored nation, this is something President Trump has brought up before in his first administration, but it creates a basket, essentially, of different prices that nations pay. And we’re going to base ours on the lowest price that is paid for鈥斕�

Rovner: We’re importing other countries’鈥斕�

Edney: 鈥攑rices.听

Rovner: 鈥攑rice limits.听

Edney: Yeah. Essentially, yes. We can’t import their drugs, but we can import their prices. And so the goal is to just basically piggyback off of whoever is paying the lowest price and to base ours off of that. And clearly the drug industry does not like this and, I think, has faced a number of kind of hits this week where things are looming that could really come after them. So that Trump is going to sign or expected to sign an executive order that will direct his agencies to look into this most-favored-nation effort. And it feels very much like 2.0, like we were here before. And it didn’t exactly work out, obviously.听

Rovner: They sued, didn’t they? The drug industry sued, as I recall.听

Edney: Yeah, I think you’re right. Yes.听

Goldman: If I’m remembering鈥斕�

Rovner: But I think they won.听

Goldman: If I’m remembering correctly, it was an Administrative Procedure Act lawsuit though, right? So鈥斕�

Rovner: It was. Yes. It was about a regulation. Yes.听

Goldman: 鈥攚ho knows what would happen if they go through a different procedure this time.听

Rovner: So the other thing, obviously, that the drug industry is freaked out about right now are tariffs, which have been on again, off again, on again, off again. Where are we with tariffs on 鈥� and it’s not just tariffs on drugs being imported. It’s tariffs on drug ingredients being imported, right?听

Edney: Yeah. And that’s a particularly rough one because many ingredients are imported, and then some of the drugs are then finished here, just like a car. All the pieces are brought in and then put together in one place. And so this is something the Trump administration has began the process of investigating. And PhRMA [Pharmaceutical Research and Manufacturers of America], the trade group for the drug industry, has come out officially, as you would expect, against the tariffs, saying that: This will reduce our ability to do R&D. It will raise the price of drugs that Americans pay, because we’re just going to pass this on to everyone. And so we’re still in this waiting zone of seeing when or exactly how much and all of that for the tariffs for pharma.听

Rovner: And yet Americans are paying 鈥� already paying 鈥� more than they ever have. Maya, just about that. Tell us.听

Goldman: Yeah, there was a really interesting report from an analytics data firm that showed the price that Americans are paying for prescriptions is continuing to climb. Also, the number of prescriptions that Americans are taking is continuing to climb. It certainly will be interesting to see if this administration can be any more successful. That report, I don’t think this made it into the article that I ended up writing, but it did show that the cost of insulin is down. And that’s something that has been a federal policy intervention. We haven’t seen a lot of the effects yet of the Medicare drug price negotiations, but I think there are signs that that could lower the prices that people are paying. So I think it’s interesting to just see the evolution of all of this. It’s very much in flux.听

Rovner: A continuing effort. Well, we are now well into the second hundred days of Trump 2.0, and we’re still learning about the cuts to health and health-related programs the administration is making. Just in this week’s rundown are stories about hundreds more people being laid off at the National Cancer Institute, a stop-work order at the National Institute of Allergy and Infectious Diseases research lab at Fort Detrick, Maryland, that studies Ebola and other deadly infectious diseases, and the layoff of most of the remaining staff at the National Institute for Occupational Safety and Health.听

A reminder that this is all separate from the discretionary-spending budget request that the administration sent up to lawmakers last week. That document calls for a 26% cut in non-mandatory funding at HHS, meaning just about everything other than Medicare and Medicaid. And it includes a proposed $18 billion cut to the NIH [National Institutes of Health] and elimination of the $4 billion Low Income Home Energy Assistance Program, which helps millions of low-income Americans pay their heating and air conditioning bills. Now, this is normally the part of the federal budget that’s deemed dead on arrival. The president sends up his budget request, and Congress says, Yeah, we’re not doing that. But this at least does give us an idea of what direction the administration wants to take at HHS, right? What’s the likelihood of Congress endorsing any of these really huge, deep cuts?听

Raman: From both sides鈥斕�

Rovner: Go ahead, Sandhya.听

Raman: It’s not going to happen, and they need 60 votes in the Senate to pass the appropriations bills. I think that when we’re looking in the House in particular, there are a lot of things in what we know from this so-called skinny budget document that they could take up and put in their bill for Labor, HHS, and Education. But I think the Senate’s going to be a different story, just because the Senate Appropriations chair is Susan Collins and she, as soon as this came out, had some pretty sharp words about the big cuts to NIH. They’ve had one in a series of two hearings on biomedical research. Concerned about some of these kinds of things. So I cannot necessarily see that sharp of a cut coming to fruition for NIH, but they might need to make some concessions on some other things.听

This is also just a not full document. It has some things and others. I didn’t see any to FDA in there at all. So that was a question mark, even though they had some more information in some of the documents that had leaked kind of earlier on a larger version of this budget request. So I think we’ll see more about how people are feeling next week when we start having Secretary Kennedy testify on some of these. But I would not expect most of this to make it into whatever appropriations law we get.听

Goldman: I was just going to say that. You take it seriously but not literally, is what I’ve been hearing from people.听

Edney: We don’t have a full picture of what has already been cut. So to go in and then endorse cutting some more, maybe a little bit too early for that, because even at this point they’re still bringing people back that they cut. They’re finding out, Oh, this is actually something that is really important and that we need, so to do even more doesn’t seem to make a lot of sense right now.听

Rovner: Yeah, that state of disarray is purposeful, I would guess, and doing a really good job at sort of clouding things up.听

Goldman: One note on the cuts. I talked to someone at HHS this week who said as they’re bringing back some of these specialized people, in order to maintain the legality of, what they see as the legality of, the RIF [reduction in force], they need to lay off additional people to keep that number consistent. So I think that is very much in flux still and interesting to watch.听

Rovner: Yeah, and I think that’s part of what we were seeing this week is that the groups that got spared are now getting cut because they’ve had to bring back other people. And as I point out, I guess, every week, pretty much all of this is illegal. And as it goes to courts, judges say, You can’t do this. So everything is in flux and will continue.听

All right, finally this week, Health and Human Services Secretary Robert F. Kennedy Jr., who as of now is scheduled to appear before the Senate Health, Education, Labor, and Pensions Committee next week to talk about the department’s proposed budget, is asking CDC [the Centers for Disease Control and Prevention] to develop new guidance for treating measles with drugs and vitamins. This comes a week after he ordered a change in vaccine policy you already mentioned, Anna, so that new vaccines would have to be tested against placebos rather than older versions of the vaccine. These are all exactly the kinds of things that Kennedy promised health committee chairman Bill Cassidy he wouldn’t do. And yet we’ve heard almost nothing from Cassidy about anything the secretary has said or done since he’s been in office. So what do we expect to happen when they come face-to-face with each other in front of the cameras next week, assuming that it happens?听

Edney: I’m very curious. I don’t know. Do I expect a senator to take a stand? I don’t necessarily, but this鈥斕�

Rovner: He hasn’t yet.听

Edney: Yeah, he hasn’t yet. But this is maybe about face-saving too for him. So I don’t know.听

Rovner: Face-saving for Kennedy or for Cassidy?听

Edney: For Cassidy, given he said: I’m going to keep an eye on him. We’re going to talk all the time, and he is not going to do this thing without my input. I’m not sure how Cassidy will approach that. I think it’ll be a really interesting hearing that we’ll all be watching.听

Rovner: Yes. And just little announcement, if it does happen, that we are going to do sort of a special Wednesday afternoon after the hearing with some of our 麻豆女优 Health News colleagues. So we are looking forward to that hearing. All right, that is this week’s news. Now we will play my “Bill of the Month” interview with Lauren Sausser, and then we will come back and do our extra credits.听

I am pleased to welcome back to the podcast 麻豆女优 Health News’ Lauren Sausser, who co-reported and wrote the latest 麻豆女优 Health News “Bill of the Month.” Lauren, welcome back.听

Lauren Sausser: Thank you. Thanks for having me.听

Rovner: So this month’s patient got preventive care, which the Affordable Care Act was supposed to incentivize by making it cost-free at the point of service 鈥� except it wasn’t. Tell us who the patient is and what kind of care they got.听

Sausser: Carmen Aiken is from Chicago. Carmen uses they/them pronouns. And Carmen made an appointment in the summer of 2023 for an annual checkup. This is just like a wellness check that you are very familiar with. You get your vaccines updated. You get your weight checked. You talk to your doctor about your physical activity and your family history. You might get some blood work done. Standard stuff.听

Rovner: And how big was the bill?听

Sausser: The bill ended up being more than $1,400 when it should, in Carmen’s mind, have been free.听

Rovner: Which is a lot.听

Sausser: A lot.听

Rovner: I assume that there was a complaint to the health plan and the health plan said, Nope, not covered. Why did they say that?听

Sausser: It turns out that alongside with some blood work that was preventive, Carmen also had some blood work done to monitor an ongoing prescription. Because that blood test is not considered a standard preventive service, the entire appointment was categorized as diagnostic and not preventive. So all of these services that would’ve been free to them, available at no cost, all of a sudden Carmen became responsible for.听

Rovner: So even if the care was diagnostic rather than strictly preventive 鈥� obviously debatable 鈥� that sounds like a lot of money for a vaccine and some blood test. Why was the bill so high?听

Sausser: Part of the reason the bill was so high was because Carmen’s blood work was sent to a hospital for processing, and hospitals, as you know, can charge a lot more for the same services. So under Carmen’s health plan, they were responsible for, I believe it was, 50% of the cost of services performed in an outpatient hospital setting. And that’s what that blood work fell under. So the charges were high.听

Rovner: So we’ve talked a lot on the podcast about this fight in Congress to create site-neutral payments. This is a case where that probably would’ve made a big difference.听

Sausser: Yeah, it would. And there’s discussion, there’s bipartisan support for it. The idea is that you should not have to pay more for the same services that are delivered at different places. But right now there’s no legislation to protect patients like Carmen from incurring higher charges.听

Rovner: So what eventually happened with this bill?听

Sausser: Carmen ended up paying it. They put it on a credit card. This was of course after they tried appealing it to their insurance company. Their insurance company decided that they agreed with the provider that these services were diagnostic, not preventive. And so, yeah, Carmen was losing sleep over this and decided ultimately that they were just going to pay it.听

Rovner: And at least it was a four-figure bill and not a five-figure bill.听

Sausser: Right.听

Rovner: What’s the takeaway here? I imagine it is not that you should skip needed preventive/diagnostic care. Some drugs, when you’re on them, they say that you should have blood work done periodically to make sure you’re not having side effects.听

Sausser: Right. You should not skip preventive services. And that’s the whole intent behind this in the ACA. It catches stuff early so that it becomes more treatable. I think you have to be really, really careful and specific when you’re making appointments, and about your intention for the appointment, so that you don’t incur charges like this. I think that you can also be really careful about where you get your blood work conducted. A lot of times you’ll see these signs in the doctor’s office like: We use this lab. If this isn’t in-network with you, you need to let us know. Because the charges that you can face really vary depending on where those labs are processed. So you can be really careful about that, too.听

Rovner: And adding to all of this, there’s the pending Supreme Court case that could change it, right?听

Sausser: Right. The Supreme Court heard oral arguments. It was in April. I think it was on the 21st. And it is a case that originated out in Texas. There is a group of Christian businesses that are challenging the mandate in the ACA that requires health insurers to cover a lot of these preventive services. So obviously we don’t have a decision in the case yet, but we’ll see.听

Rovner: We will, and we will cover it on the podcast. Lauren Sausser, thank you so much.听

Sausser: Thank you.听

Rovner: OK, we’re back. Now it’s time for our extra-credit segment. That’s where we each recognize the story we read this week we think you should read, too. Don’t worry if you miss it. We will put the links in our show notes on your phone or other mobile device. Maya, you were the first to choose this week, so why don’t you go first?听

Goldman: My extra credit is from Stat. It’s called “,” by Andrew Joseph. And I just think it’s a really interesting evidence point to the United States’ losses, other countries’ gain. The U.S. has long been the pinnacle of research science, and people flock to this country to do research. And I think we’re already seeing a reversal of that as cuts to NIH funding and other scientific enterprises is reduced.听

Rovner: Yep. A lot of stories about this, too. Anna.听

Edney: So mine is from a couple of my colleagues that they did earlier this week. “.” And I thought it was really interesting because it had brought me back to these cheap, bare-bones plans that people were allowed to start selling that don’t meet any of the Obamacare requirements. And so this guy who used to, in the ’80s and ’90s, wrote for sitcoms 鈥� “Coach” or “Night Court,” if anyone goes to watch those on reruns. But he did a series of random things after that and has sort of now landed on selling these junk plans, but doing it in a really weird way that signs people up for a job that they don’t know they’re being signed up for. And I think it’s just, it’s an interesting read because we knew when these things were coming online that this was shady and people weren’t going to get the coverage they needed. And this takes it to an extra level. They’re still around, and they’re still ripping people off.听

Rovner: Or as I’d like to subhead this story: Creative people think of creative things.听

Edney: “Creative” is a nice word.听

Rovner: Sandhya.听

Raman: So my pick is “,” and it’s from Anna Claire Vollers at the Louisiana Illuminator. And her story looks at some of the ties between civil rights and health. So 2025 is the 70th anniversary of the bus boycott, the 60th anniversary of Selma-to-Montgomery marches, the Voting Rights Act. And it’s also the 60th anniversary of Medicaid. And she goes into, Medicaid isn’t something you usually consider a civil rights win, but health as a human right was part of the civil rights movement. And I think it’s an interesting piece.听

Rovner: It is an interesting piece, and we should point out Medicare was also a huge civil rights, important piece of law because it desegregated all the hospitals in the South. All right, my extra credit this week is a truly infuriating story from NPR by Andrea Hsu. It’s called “.” And it’s a situation that if a private employer did it, Congress would be all over them and it would be making huge headlines. These are federal workers who are trying to do the right thing for themselves and their families but who are being jerked around in impossible ways and have no idea not just whether they have jobs but whether they have health insurance, and whether the medical care that they’re getting while this all gets sorted out will be covered. It’s one thing to shrink the federal workforce, but there is some basic human decency for people who haven’t done anything wrong, and a lot of now-former federal workers are not getting it at the moment.听

OK, that is this week’s show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate if you left us a review. That helps other people find us, too. Thanks as always to our editor, Emmarie Huetteman, and our producer, Francis Ying. Also, as always, you can email us your comments or questions, We’re at whatthehealth@kff.org, or you can still find me on X, , or on Bluesky, . Where are you folks hanging these days? Sandhya?听

Raman: I’m on X, , and also on Bluesky, at Bluesky.听

Rovner: Anna.听

Edney: and , @annaedney.听

Rovner: Maya.听

Goldman: I am on X, . Same on and also increasingly on .听

Rovner: All right, we’ll be back in your feed next week. Until then, be healthy.听

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Reddy can’t match the salaries offered by larger health systems 鈥� a difficulty compounded by a widespread shortage of primary care doctors.

The shortage is tied largely to the lower pay and relative lack of prestige associated with primary care, making recruitment difficult. “It certainly is challenging to expose medical students early in their careers to the joys of this kind of integrated health care,” Reddy said. “The relationships we build and the care we provide truly allow people to live longer with a better quality of life.”

Hoping to increase revenue so Acacia can afford to pay more, Reddy has signed the practice up for alternative payment methods with health plans that offer bonuses for meeting certain primary care goals tied to child vaccinations, blood pressure control, and screenings for breast cancer, colorectal cancer, and mental health. Such pay-for-performance arrangements are among the many efforts by industry players and state officials to confront the problems plaguing primary care.

frequently opt not to go into primary care, and that’s not good for patients. People with regular primary care providers are more likely to that avoids serious illnesses and feel more empowered to advocate for themselves. They’re also less likely to encounter language barriers, resort to costly emergency room visits, or forgo care.

Six years after the influential California Future Health Workforce Commission made a to plug a projected shortage of 4,100 primary care providers in 2030, a number of public and private initiatives have proliferated around the state to address the problem. They include new residency slots, debt forgiveness, waived medical school tuition, new ways of paying doctors, expanded nurse practitioner roles, and a statewide target to increase primary care spending. Hundreds of millions of taxpayer dollars have been allocated for some of these efforts.

But numerous academic experts and medical professionals believe those moves, while well intended, have been scattershot and insufficient. “The pieces are there,” said Monica Soni, chief medical officer of Covered California, the state’s Affordable Care Act health insurance marketplace. “I am worried we started a little too late, and I think it’s a little too siloed.”

A by the California Health Care Foundation found that substantial progress had been made on some of those goals, including recruitment of students from low-income households and communities of color. A separate analysis from the foundation showed that, from 2020 to 2023, California jumped about 10 spots in a ranking of states by primary care residents and fellows per capita.

However, the latest state data shows nearly 15 million Californians live in areas without enough primary care providers to meet patient needs.

State budget constraints and , especially to Medicaid, could exacerbate shortages in areas already desperate for clinicians and dampen hopes of building a robust primary care system that state officials and virtually everyone in the industry agree would be a strong defense against serious 鈥� and costly 鈥� illnesses. Federal cuts could also hit medical training and hospital systems.

“Many of us are very scared about threats from both the Trump administration and Republicans in Congress,” said , a family community medicine professor at the University of California-San Francisco.

Acute Primary Care Shortages

California’s lack of primary care providers, including doctors, nurse practitioners, and physician assistants, is most acute in rural parts of the state, particularly in the north and the Central Valley. Entire rural counties, including Del Norte, Madera, Tulare, and Yuba, are designated shortage areas, according to state data. Some densely populated urban areas, including parts of Los Angeles, also confront shortages.

Many Californians face months-long waits for appointments or have to travel long distances or go to emergency rooms for nonurgent medical needs, which means hours spent in crowded waiting rooms for unnecessarily expensive care.

In Chico, 90 miles north of Sacramento, the emergency room at the only hospital in town has seen a sharp increase in patients over the past decade, due in part to a lack of primary care providers in the area.

“People who don’t have a primary care provider 鈥� which is a lot, because there are not enough 鈥� end up in the ER when they need routine care,” said David Alonso, a local internal medicine doctor. “The ER then says, 鈥極K, you should follow up with your primary care provider,’ and they’re like, 鈥榃e don’t have one.’”

, director of the Robert Graham Center for Policy Studies, a health policy think tank, said failure to invest robustly in primary care has robbed the public of its benefits.

The field has historically been underfunded, accounting for of national health care spending in 2022, according to the Milbank Memorial Fund, a national nonprofit focused on population health and health equity.

The consequences are clear.

The U.S. spends significantly more per capita on health care than other industrialized nations, and yet Americans aren’t any healthier. Chronic conditions such as heart disease, diabetes, arthritis, and Alzheimer's, as well as mental illness, account for 90% of the $4.5 trillion spent on health care .

Medical students, often faced with staggering educational debt, are increasingly over primary care. The average salary of a family medicine physician is slightly over $300,000, compared with more than $565,000 for a cardiologist and over $763,000 for a neurosurgeon, according to .

“If you are going to pay over $300,000 to go to medical school, you want to be a neurosurgeon; you don’t want to be a family practice doctor,” said William Barcellona, executive vice president of government affairs at , a Los Angeles-based professional association representing 360 medical groups and independent practice associations nationwide.

Barcellona said the Golden State’s high housing costs also make recruiting difficult.

But it’s not only pay that tempers enthusiasm for primary care. It’s also burnout from so many unpaid hours spent recording details of medical visits in electronic health records; haggling with insurance companies for treatment authorization; answering phone calls and emails from patients; or searching far and wide 鈥� often in a health care desert 鈥� for specialists with the right expertise.

Debby Lee, the daughter of Hmong immigrants from Laos, experienced this kind of frustration firsthand.

Cultural and linguistic barriers faced by her family motivated her to pursue internal medicine. Lee worked part of her residency at a community clinic serving Hmong in the Sacramento area. She loved the patients, as well as her co-workers. But she was burdened by outdated technology that limited the number of patients she could see. “I just saw myself kind of burning out being in that setting,” Lee said.

When the clinic invited her to stay, she declined, taking a job with a bigger health system.

Solutions to the Shortage

Besides residencies, other efforts support primary care.

The Health Plan of San Mateo offers grants to help medical practices retain and add to primary care staff. In exchange, the practices 鈥� some single physicians serving patients in California’s Medicaid program, Medi-Cal 鈥� must show they have increased their patient load and retained newly hired providers for five years.

The idea is to provide capital so doctors can hire the staff they need to run their practices efficiently, increase salaries, offer bonuses, and even take sabbaticals. Such efforts are consistent with one of the main thrusts of the 2019 workforce report: to increase investment in primary care.

California recently joined several other states, including Connecticut, Oklahoma, and Rhode Island, in setting a target to increase primary care spending. So far, those policies have yielded .

Late last year, California’s Office of Health Care Affordability set a target to make primary care of total health care spending by 2034, more than double the current proportion. It imposes no requirements, relying on the goodwill of health plans to work with medical providers.

Greater spending on primary care would mean better pay and more people working in the field, said Richard Kronick, a public health professor at UC-San Diego and a member of the OHCA board. “That’s a big change. Will it happen? I don’t think anyone can predict the future with any certainty.”

Stephen Shortell, a professor emeritus of health policy and management at UC-Berkeley, said “some of that increase might occur, but at some point, it might need to be made mandatory.”

In its report, the workforce commission also cited the importance of alternative forms of primary care payment that offer extra cash for quality care. The affordability office has to encourage such payment methods. The aim is to transform the system from one in which every medical service has a price tag to one that treats people holistically, and in which adherence to medical standards brings more money to doctors and their office staff.

Such arrangements are common among HMOs, though less so in primary care practices. Where they do exist, different health plans and other payers generally design them differently, which means primary care practices manage multiple payment models, adding to their administrative burden.

Reddy’s family practice is participating in a one-year demonstration project intended to reduce that burden by having multiple insurers work together in one payment plan.

The project brings together three large insurers 鈥� Health Net, Aetna, and Blue Shield of California 鈥� and 10 independent practices across the state with the goal of improving care while boosting revenue for the medical groups. It is administered by two industry groups, the and the .

On top of customary payments, either for services rendered or monthly per-member allotments, the medical practices receive bonuses for meeting targets or improving their performance on .

Participating practices also receive monthly per-patient payments for “population health management,” which means managing the collective health of their patients. And they can search a single platform to find all their patients covered by one of the three plans.

In addition to extra payments and fewer administrative hassles, the health plans pay for a “practice coach,” whose job is to help primary care groups meet their targets and provide more seamless care.

The idea is to add more insurers and medical groups over time, said Todd May, Health Net’s medical director for commercial health plans, who is among those driving the project. “In addition to better outcomes, we’d like to see a stronger, more robust, and more satisfied primary care workforce,” he said.

Reddy hopes she can increase Acacia’s revenue by 20%, using the extra money from this and other pay-for-performance arrangements. That, she said, would enable her to raise pay for her staff and hire clinicians.

For many years, her practice has limited the number of patients it has accepted. But after searching for the better part of five years, Reddy has hired a doctor on a half-time basis and another is coming on board in June.

“This is the most hopeful I have felt in decades,” Reddy said.

Phillip Reese contributed to this report.

This article was produced by 麻豆女优 Health News, which publishes , an editorially independent service of the .听

麻豆女优 Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at 麻豆女优鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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The Chicago health care consultant contacted his physician at Northwestern Medicine, who referred him for a diagnostic colonoscopy, at least partly because Contos, 45, has a family history of colon issues.

“I work out a lot,” he said. “But my partner said this isn’t normal. My primary care physician said, 鈥楪iven your family history, let’s get you in.’”

Northwestern Memorial Hospital asked him to prepay $1,000 out-of-pocket, and he underwent the procedure in June.

Then the bill came.

The Medical Procedure

Colonoscopies are performed in the United States a year. Rates of colorectal cancer are on the rise, particularly among younger people.

The procedure, which is also a recommended screening for people 45 or older, involves examining the large intestine using a tube with a video camera that can also collect tissue samples.

It typically takes less than one hour, with another hour spent taking the patient’s history, administering anesthesia, and monitoring their recovery, said Glenn Littenberg, a physician who recently chaired the reimbursement committee of the American Society of Gastrointestinal Endoscopy.

According to Contos’ medical record, the gastroenterologist who performed his colonoscopy described it as “not difficult.” He biopsied and removed small growths called polyps from two spots and identified large internal hemorrhoids, which are swollen veins.

The biopsy samples were sent to pathology for testing and found to be precancerous. But the gastroenterologist reported finding no evidence of cancer, and after reviewing the pathology report, he concluded hemorrhoids were the likely cause of the bleeding.

The Final Bill

The hospital charged a total of $19,206 for the procedure, including physician fees. The insurer negotiated the price to $5,816 and paid $1,979, leaving a patient share of $4,047. (It wasn’t clear why the payments added up to slightly more than the negotiated price.) After Contos had paid $1,000 up front, plus $1,381 right after the procedure, the hospital said he still owed $1,666.

The Billing Problem: Colonoscopies That Find Polyps Cost More

Contos was shocked and angry when he received his itemized bill. “I said, 鈥業 don’t understand this.’ Then I started to research the cost.”

He asked the hospital what it charges for a diagnostic colonoscopy and was told he’d been sent a cost estimate through his online patient portal prior to the procedure.

The estimate, which took his deductible of $3,200 into account, listed a total price of $7,203, with an out-of-pocket bill of $2,381. He asked Northwestern why the charges were nearly three times the estimate and why his out-of-pocket share was nearly twice as high.

One big reason was revealed in an explanation of benefits (EOB) statement from Contos’ insurance company, Aetna: Northwestern had charged for two colonoscopies, at $5,466 each. And there were two fees for the gastroenterologist 鈥� $1,535 and $1,291.

The first procedure was listed as “colonoscopy and biopsy,” while the second was listed as “colonoscopy w/lesion removal.” Aetna’s negotiated member rate reduced the first $5,466 hospital charge to $3,425, while the charge for the second procedure was lowered to $1,787 鈥� $1,638 less.

Neither the bill nor the EOB explained why there was a second procedure listed, at a reduced price.

After examining Contos’ bill, Littenberg said it’s standard for providers to bill for two colonoscopies if they remove two or more polyps in different ways, because of the extra work. As in this case, hospitals typically use a modifier code that reduces the amount charged for the second billed colonoscopy so they charge only for the extra work, he added.

“How do you explain that in sensible terms that anyone could understand?” Littenberg said.

Even with that reduction, Littenberg said, he thought Contos’ total out-of-pocket cost of $4,047 was “a lot, though not rare for large academic centers.”

Contos’ insurance documents show Aetna’s negotiated rate for his colonoscopy at Northwestern was more than twice the insurer’s median negotiated rate for the same procedure at other Chicago-area hospitals, according to Forrest Xiao, director of quantitative research at Turquoise Health, a company that gathers health care price data.

In exchanges with Northwestern and Aetna representatives, Contos asked why he was charged for two colonoscopies. A Northwestern representative said that because of the modifier code, he wasn’t actually being billed for two procedures, which Contos found bewildering.

“I told Northwestern, 鈥業’m not paying that, and I don’t care if you send me to collections,’” he said. He filed appeals with the hospital and Aetna but was ultimately told the billing was correct.

The Resolution

In an email, Contos told the billing department that its charge was “ridiculously high.” A representative responded that Northwestern’s pricing is in line with other academic medical centers in Chicago and “non-negotiable” 鈥� and that his account would be turned over to a collections agency.

CVS Health spokesperson Phillip Blando said in a written statement to 麻豆女优 Health News that the claims for Contos were “paid accurately” by Aetna, declining further comment. (CVS Health owns Aetna.)

Northwestern did not respond to multiple requests for comment.

Contos said he wrote to his physician that he was regretfully dropping him and leaving Northwestern entirely because of the health system’s high pricing.

He said he’s still experiencing periodic symptoms, which he relieves with over-the-counter Preparation H. A one-ounce tube of the ointment costs $10.99 at CVS.

The Takeaway

To get a colonoscopy at a lower price, Littenberg said, patients should consider going to a freestanding endoscopy center or ambulatory surgery center not associated with a hospital. found that ambulatory surgery centers billed insurers an average of about $1,030 for a colonoscopy with biopsy or with removal of a polyp, compared with $1,760 at a hospital.

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To get a sense of how much a diagnostic colonoscopy could cost, patients can consult a hospital’s price website and an insurer’s cost-estimator website, both required by federal price transparency rules.

Patients also can look up a of the cash price, which can be lower than the price for patients using insurance to pay for a procedure. In addition, they can check prices through websites such as and , which draw from federal price transparency data or claims data from insurers.

Still, the actual cost could be higher than the estimate if the colonoscopy finds one or more polyps that need to be removed and biopsied, which occurs in at least 40% of all colonoscopies, Littenberg said. Patients should ask whether the price includes those potentially extra services. After all, the point of a diagnostic colonoscopy is to find and, if necessary, treat lesions that could cause problems 鈥� regardless of the number found.

It all should be easier for patients, Xiao said: “You shouldn’t have to be a medical billing expert to know what you’re going to pay.”

Bill of the Month is a crowdsourced investigation by 麻豆女优 Health News and that dissects and explains medical bills.听Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

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