But in January 2025, the city’s health systems had no good options for Debbie Doppelt, a 60-year-old jeweler with an unusual form of lung cancer that mostly afflicts nonsmokers like her. The Food and Drug Administration hadn’t yet approved sunvozertinib, a drug developed in China that targets the mutation driving Doppelt’s tumors. She had been through chemotherapy and surgery, but the cancer had now spread to her brain. And she didn’t qualify for the relevant clinical trials.

Then an option emerged, in an offhand remark.

“Too bad she’s not Chinese,” a doctor told her son Max Doppelt, who had organized his mother’s care since her 2023 diagnosis. “She could go to a pharmacy in China and buy it.”

Within hours, mother and son had reached out to friends and relatives, one of whom procured a small supply of sunvozertinib from a contact living in China. A few months later, Max flew to Shanghai to get a refill.

Other patients have followed. “No organization or doctor is guiding patients to China, but word gets out,” Max said. He said he knows of at least 30 Americans who’ve made the pilgrimage to obtain the drug, which the FDA licensed in July 2025 but wasn’t yet on the U.S. market as of mid-October of this year.

Sunvozertinib, made by Shanghai-based Dizal Pharmaceutical, isn’t the only treatment drawing patients to China. Americans, Europeans, and others are trekking there to enter clinical trials for CAR-T therapy, an area in which China is .

China, until recently known more as a supplier of drug precursor chemicals and generic medicines, has become a biotech powerhouse, accounting for of new drugs tested around the world in 2025. U.S. pharmaceutical companies are testing new therapies there and signing billion-dollar contracts with Chinese firms to develop and market their drugs.

China’s progress has alarmed some politicians, who warn of lost jobs and U.S. dependency on Chinese medicines. The Trump administration in June kicked off Operation TrialBlazer, aimed at speeding up some FDA regulatory processes to lure back more clinical trials.

China’s poor showing in vaccine and drug development during the covid pandemic prompted the country to overhaul its biotech sector, dramatically altering the global industry, said Sam Rasty, a veteran of small biotech companies who now leads one called FynderBio. Venture capital now flows heavily to early-stage clinical work in China and Australia, where regulatory systems enable key first-in-human studies much more quickly than in the United States.

Chinese companies are so much faster at this process that U.S. biotechs, which used to share early advances at conferences or funding meetings, now routinely conceal their progress out of fear that competitors will take their ideas and speed them to market, said Steve Potts, CEO of Breakthru Medicine, a small biotech.

At a meeting he attended in May, nearly all the 60 biotech CEOs in the room planned to run phase 1 trials in Australia, Europe, or China, Potts said. Five or 10 years ago, most of those trials would have been carried out in the U.S.

“Slow and prohibitive” FDA requirements are driving investment to more-nimble Chinese companies, President Donald Trump’s nominee to lead the agency, Heidi Overton, warned in her opening statement at her Sept. 24 confirmation hearing.

The movement of clinical trials overseas “should give pause to every American and those who serve on their behalf,” Overton said. “When we lose this advantage, we lose our health security. And when we lose our health security, we lose everything.”

Overton pledged to continue TrialBlazer, which mirrors Australian processes begun in 1991. It is aimed at accelerating clinical trials and approvals so patients do not feel compelled to seek treatment abroad, said Department of Health and Human Services spokesperson Emily Hilliard. It is sometimes legal to obtain medication abroad for personal use, but the FDA “cautions patients about potential safety and quality risks associated with treatments outside our regulatory system,” she added.

As the FDA moves to streamline drug development, members of Congress are trying to slow Chinese firms’ integration into U.S. biotech.

Rep. John Moolenaar (R-Mich.), who chairs the House Select Committee on the Chinese Communist Party, in June co-sponsored legislation with Rep. Debbie Dingell (D-Mich.) requiring all U.S. pharmaceutical deals with Chinese companies to be cleared by the Treasury Department.

Others see biotech protectionism as misguided. China’s focus on improved medicines can only help us, said Peter Kolchinsky, managing partner of RA Capital Management, which has Chinese investments in its biotech portfolio.

“We may be adversaries in many areas, but we’re not competing with them to cure cancer. We are collaborating with them to cure cancer,” he said. “There are things that are bigger enemies than any other nation on Earth.”

Cancer Knows No Boundaries

A minor but persistent cough led to the diagnosis of Debbie Doppelt’s cancer in late 2023. Chemo, immunotherapy, and surgery kept it at bay for months, but in December 2024, scans showed the cancer had spread to her brain, with 10 tiny tumors.

The FDA earlier that year had approved amivantamab, a drug that targeted the mutation driving Doppelt’s tumor, but Max was concerned about its toxicity. Also, several doctors he consulted told him that amivantamab might not penetrate brain tissue to fight cancer there.

Doppelt tried to enter a clinical trial at Memorial Sloan Kettering Cancer Center, where she was a patient, for zipalertinib, another drug that targeted her mutation. But in January 2025, the Doppelts learned that a slight scarring on her lungs had rendered her ineligible for the study.

That left sunvozertinib, which gained approval in China in 2023. It was also being tested in the U.S., but only in late-stage trials in which half the subjects received chemotherapy only. That risk was a nonstarter for Doppelt, whose cancer had already outsmarted chemo.

So Max flew to Shanghai, returning with 26 boxes of sunvozertinib in his luggage. The drugs cost about $10,000, he said.

“Getting on the plane and bringing the medicine home felt like my life’s purpose,” Max said. “The data was so clear that this drug had significant efficacy in the brain. Anything else she might do, she might not last a year.”

On Sept. 1 of this year, AstraZeneca signed an agreement with Dizal to distribute the drug worldwide, and it plans to make it available in the U.S. by the start of 2027, spokesperson Tara Parsell said.

Doppelt, who runs a diamond business with her husband, has tried to stay positive and healthy, scarcely missing a day of work since her 2023 diagnosis. She said she’s grateful she has a loving community and the means to afford the best available therapies.

“I think I’ve been pretty successful at having, actually, an amazing three years,” she said. “In some ways a better three years, with all of it, than the three years before, because you’re so appreciative of everything.”

Doppelt’s parents were Holocaust survivors. “They were always saying: 鈥楾his piece of bread tastes so good! Do you know what it is to be hungry?’”

吃瓜不打烊ing for help for his mother gave Max, a 30-year-old computer engineer, an idea for helping patients find the right treatment 鈥� which, in cases of advanced cancers, may be a clinical trial.

A year ago, he quit his tech job and that uses artificial intelligence to combine data from research and drug company sites with a patient’s health records to help them find the right study.

Similar apps are being used to help drug companies and hospital systems increase the percentage of U.S. cancer patients who enter clinical treatment trials, currently . This will also strengthen the U.S. drug industry, said CEO Kent Thoelke, whose company offers an AI program designed to help hospitals and clinics enroll trial subjects.

About 300 patients have used Max’s app. So far his clients, whom he doesn’t charge, have all been lung cancer patients like his mom. Sunvozertinib seems to help about half those who take it, he said.

A 70-year-old woman whom Max had assisted got a six-month supply of the drug earlier this year from China, only to learn after three months that it wasn’t working. “My cancer had spread,” said the woman, whom 吃瓜不打烊 agreed not to name, to protect sensitive health information.

鈥業’ll Do Everything in Our Power’

Doppelt has done well on the drug. Some 19 months after starting on it, her cancer was still mostly kept at bay, with the help of a few radiation treatments and dose adjustments.

AstraZeneca’s plans to widely distribute sunvozertinib would mean no more trips to China. But Max had few illusions that the drug would work for his mom forever.

“She has a metastasizing cancer that will learn to bypass the drug,” he said. “At that point we’ll be dependent on the latest and greatest therapies. If they happen to be in China, I’ll do everything in our power to go there.”

At his Upper East Side apartment one recent afternoon, Max examined the current clinical trial outlook for his mother. He pulled up her profile on the app and scrolled down a list scoring available trial sites according to their fit and proximity.

“This one looks good,” he said, pointing to a clinical trial for firmonertinib, a drug China approved in 2021 that’s under study in the U.S. and elsewhere.

CAR-T therapy is another possibility, particularly a variety that the University of Colorado has developed to boost patients’ immunological attack on mutations like the ones driving Doppelt’s cancer.

But Kyle Concannon, a leader of the Colorado research team, said regulatory uncertainty has slowed his progress. As new tools enable sophisticated measures of things like toxicity and tissue distribution, they add time, cost, and risk to the therapy’s development. These technologies may be better at detecting possible harms, “which is good,” Concannon said, “but the alternative to a new medicine, with a natural disease like lung cancer, is the individuals will die from their disease.”

Max Doppelt and other patient advocates, while pushing for faster FDA processes, don’t want to rule out more Chinese medicine runs.

“When drugs are approved in China but not in the U.S., of course we will deploy the China option where necessary,” said Marcia Horn, CEO of the nonprofit International Cancer Advocacy Network. “Lives depend on it.”

Max would prefer to see the drugs his mother needs developed in the United States. But he, too, opposes any effort to freeze out the Chinese biotech industry.

The discovery of new life-preserving drugs “really brings us together,” he said. “We’re all humans at the end of the day.”

This article first appeared on 吃瓜不打烊 and is republished here under a .

Not-So-Great Healthcare

Why doesn’t world-class medicine produce world-class health?

Hayat Norimine’s reporting gets at something that has bothered me for a long time about American healthcare (Priced Out: “As Health Insurance Costs Soar, Healthcare Workers Also Feel the Pinch,” Sept. 22).

We are very proud of U.S. medicine, and we should be. We are at the forefront of new treatments, our clinician workforce is unmatched, and we deploy technologies that seemed impossible just a few years ago. Yet we are in the middle of the pack compared with other countries, in terms of healthy lifespan and many markers of quality care.

At the same time, the cost of accessing care has become outrageously high. When clinicians stop getting health insurance for themselves and their families, you know something is deeply broken.

What good is our health system if most people cannot afford to use it?

One family in Norimine’s story went without insurance when their premiums climbed. Another person kept her coverage but waited weeks to see a doctor because of a $10,000 deductible. These are different problems, but both expose the distance between the care we can provide and the care people can actually access.

Insurance is supposed to help people get the care they need to stay healthy, not just when they are at death’s door. Yet the way insurance is designed can discourage someone from seeing a clinician early, filling a prescription, or following up before a problem gets worse. A clinician may say, “This is what you should do next,” while a person’s coverage gives them a reason to wait or decline.

That tension is not an accident. It is how the system was built. Doctors design care. Insurers design coverage. The two are put together in separate rooms by different teams, measured on different things, then handed to the same person as if they were one plan. No physician would design a $10,000 deductible; it just blocks people from investing in prevention and getting care early. But no physician was in the room when that threshold was set.

Making coverage affordable is essential. So is asking what that coverage enables people to do. If better health is the goal, the people responsible for a person’s health need a hand in shaping what their coverage pays for and when. Design coverage and care together, and it gets easier for people to get the care we know works while avoiding waste.

鈥� Clay Johnston; Austin, Texas

On Dementia, Violence, and Sedation

Reading “Drugs Are Widely Used To Sedate Dementia Patients. Her Sons Wanted To Keep Her Off Them” (Sept. 30) inspired me to share my own experience.

My husband died of dementia about two years ago at age 86. It was not an easy journey. Dementia made him agitated for the same reason it does to others: People with dementia cannot tolerate being told “no.”

So when I had to tell him to stop driving, he became violent. I was told by an eldercare specialist that if my husband remained at home, he might kill me. So it was off to a memory care center, a really good and really expensive one. And he became violent and agitated there because he couldn’t come home, which was what he wanted, and which I could not safely handle. I was also aware that if he couldn’t make it at the memory care center, there was virtually no other place that would take him.

So did I say yes to medication? I did indeed. Even with the antipsychotic, my husband would become out of control. He often tried to “abscond,” as they say in memory-care speak. I also paid through the nose for one-on-one care, which kept him sort of safe. But one night, he fell in the bathroom and broke his hip. A hip replacement was suggested. He was suffering, he had absolutely no quality of life, and I turned the offer down. He was transferred to palliative care and died peacefully about five days later.

There is no solution to this problem that I can see other than medical aid in dying, which he probably would have refused. Me 鈥� I will not refuse. My current terror is that I might do this to my remaining family.

鈥� Nora Staffanell; Monroe, New York

The issue is appropriate treatment, not simply drug avoidance.

Jordan Rau’s report rightly highlights the danger of using sedating medications simply to make people with dementia easier to manage. But inappropriate chemical restraint should not be confused with medically appropriate treatment of serious neuropsychiatric symptoms.

Psychosis, agitation, and aggression are distinct. Before prescribing medication, clinicians should identify the target symptom and look for reversible contributors such as pain, infection, medication effects, constipation, sleep disruption, sensory impairment, fear, environmental overstimulation, or the way personal care is being delivered.

Nonpharmacological, person-centered interventions should generally come first. The American Psychiatric Association recommends antipsychotics, outside of emergencies, only when agitation or psychosis is severe, dangerous, or causes substantial distress and after nonpharmacologic approaches have been assessed. When used, treatment should begin at a low dose and aim for the minimum effective dose.

However, nonpharmacological measures do not always suffice. In 2026, the APA reaffirmed that antipsychotics can benefit some older adults with behavioral and psychological symptoms of dementia when used judiciously within a comprehensive treatment plan. Brexpiprazole, for example, received FDA approval in 2023 for agitation associated with Alzheimer’s dementia.

These drugs carry real risks, including increased mortality, sedation, orthostasis, extrapyramidal symptoms, cerebrovascular events, and falls. But untreated severe agitation or aggression also carries risks: distress, injury, emergency transfers, hospitalization, caregiver breakdown, and loss of placement.

The responsible question is therefore not whether antipsychotics are dangerous, but whether, for a particular patient and target symptom, likely benefits outweigh risks after reversible causes and nonpharmacological measures have been addressed.

Good dementia care means neither reflexive prescribing nor reflexive withholding. It means careful diagnosis, person-centered care, informed risk-benefit discussion, lowest effective dosing, close monitoring, and periodic attempts to reduce or discontinue medication when appropriate.

鈥� James Ellison; Philadelphia

Decoding ER Bills

Autumn Daniels was billed $410 for an emergency room visit in which no clinician evaluated her (Bill of the Month: “She Left After Waiting Hours in the Emergency Room. The ER Billed Her Anyway,” Sept. 29). She received registration, vital signs, and a single question, then sat in the waiting room for four hours and left.

Carle Health billed CPT code 99281, an evaluation and management service. The American Medical Association’s CPT guidelines, quoted in your article, state that triage alone is not an evaluation and management service and cannot be reported with that code. Carle’s own email confirms the problem by defining “care” to include registration and nursing assessment. That’s triage under another name.

Billing for a service that was not performed is the most important reason insurers deny hospital claims, and it’s what physicians are trained to recognize as fraud. Daniels’ insurer denied the claim under “against medical advice,” a label that cannot apply to a patient no clinician ever saw. The right response is a written refusal to pay, addressed to the hospital, stating that the billed service was never rendered.

I spent 20 years in clinical medicine and over a decade as a health insurance medical director reviewing exactly this question. Daniels should owe nothing.

鈥� Virgie Bright Ellington; New Rochelle, New York

This article goes much deeper than simply exploring lack of treatment in the emergency room. It’s about callous treatment, which is unacceptable on many levels. The ER provided poor care and wasn’t busy, but because the unseen patient was only feeling unwell and not bleeding from every orifice, she wasn’t taken seriously as a priority, so she left. Yet despite not being seen by a doctor, a miscellaneous bill 鈥� over $400 鈥� was submitted for payment.

What is pain anyway 鈥� feeling uncomfortable? Pain is people dying from triggers in the body. Therefore, treating people like a business by these corporate hospitals is extremely concerning. A person feeling ill, receiving no treatment after four hours of waiting, then leaving the ER with a chronic headache  鈥� which could be anything from a brain injury, an upcoming stroke, or a hemorrhage 鈥� should not be charged. And certainly a miscellaneous code should not have been applied for the pleasure of pain, waiting, and the five minutes it took to take her temperature.

No, the insurance company should not pay, and it should also let the hospital know that it will be booted from the network for false claims 鈥� spending less-than-adequate time with a patient and then submitting bills.

Laws need to be mandated, and advocates must demand optimum care, with healthcare providers abiding by the Hippocratic oath.

People are not stick figures to be treated carelessly and then charged fully. Every time a baseless claim is submitted by the hospital to the insurance company, there’s a trickle-down effect, and rates go up.

It’s akin to being charged for walking on the sidewalk outside a grocery store, checking the fruit stands, getting help from the outside clerk, and then being charged by the store 鈥� despite not making a purchase.

Bad service serves no one and will backfire on the provider in the end. How many times do we have to check management at the door for not understanding that very concept? Far too often. We need to show that medical disregard and abuse are not tolerated. It’s essential to pursue change at the federal and state level. Why? Because, ultimately, hospitals are taking advantage of people. They’ve forgotten why they exist.

鈥� Tiff Gadison; Sacramento, California

Living Under the Government’s Thumb

It’s not a good feeling to know that the government has the upper hand and pulls the strings (Health Hub: “Sticker Shock at the Doctor’s Office Could Motivate Midterm Voters,” Sept. 18). Here it is, 2026, and this single mother still struggles 鈥� but even more so with talks of cuts and funding to programs I and so many others depend on.

I was interviewed back in November 2018 about an absurd medical bill I received and was expected to pay, even though I have Medicare and Medicaid. Jay Hancock wrote my story, which aired on All Things Considered (Bill of the Month: “Chronically Ill, Traumatically Billed: The $123,000 Medicine for MS,” Nov. 28, 2018). It also appeared on CBS Mornings with Gayle King.

Things definitely haven’t gotten any better for me. I worry about not only my health insurance and my medication but the fact I am on permanent disability. The state of the nation under the current administration is pretty frightening. My Social Security/SSI is my only means of getting by. I receive EBT (electronic benefits transfer for food assistance), and I have a family to feed. I live in government-subsidized housing, based on my income. So pretty much my whole life is controlled by the actions of folks who probably have zero clue how it is to live on a fixed income and with a chronic health condition, one in which stress exacerbates the symptoms, as well as being a single parent.

Don’t even mention being able to afford the price of gas; my car will sit more than go now. I have to pick and choose when to run errands, usually on a day I already have a scheduled appointment. That not only causes me lots of anxiety, but the fatigue is relentless! This is a very stressful, unnerving way to live.

鈥� Shereese Hickson; Niles, Ohio

Uniting for Good

I’m writing on behalf of students with the American Lung Cancer Screening Initiative (ALCSI). Our team recently came across Noam N. Levey’s Common Ground article “鈥楥ancer Doesn’t Care’: Citizen Lobbyists Unite To Push Past Washington’s Ugly Politics” (Oct. 21, 2025), and its message about cancer bringing people together across political divides strongly resonated with our team.

I wanted to share a recent development in California that reflects a similar idea. A lung cancer screening awareness bill that began as an idea from a small group of California college students was signed into law by Gov. Gavin Newsom on Sept. 28, after receiving support from legislators of both parties.

As students passionate about lung cancer screening awareness, our team began exploring legislative action to improve screening rates. In March 2025, we developed the initial proposal that ultimately became California SB 1124 and continued advocating for the bill throughout the legislative process until it was signed into law.

Lung cancer is the leading cause of cancer-related death in the United States. Screening can catch the disease at an earlier, more treatable stage, but many people eligible for lung cancer screening don’t know they qualify or that screening is available to them. SB 1124 addresses that gap by requiring tobacco retailers across California to post signage about lung cancer screening at the point of sale, reaching people where they already are rather than relying on them to seek out the information. Considering that California has historically been one of the states with the lowest lung cancer screening rates, this action is crucial.

The bill was introduced by Sen. Bob Archuleta (D鈥揚ico Rivera). Through grassroots outreach, students involved with this bill initiative helped build a coalition of support from organizations across California and the country, including the California Academy of Family Physicians, the American College of Surgeons, and the NAACP California Hawai鈥榠 State Conference, among dozens of others.

Our experience really echoed what stood out to us in Levey’s article: that cancer can bring together people who may disagree on plenty of other issues. We also hope our experience shows that young people can have a meaningful voice in that process and contribute to bringing people together around a shared public health goal.

鈥� Elaine Dong; Los Angeles

This article first appeared on 吃瓜不打烊 and is republished here under a .

Daniel said she wondered: “Am I cheating on him? Am I going behind his back? Am I acting like I don’t trust him by seeking a second opinion?”

Many patients find themselves in this position, but family medicine physician Jen Caudle said patients shouldn’t feel awkward about asking for a second opinion. In fact, in her practice in New Jersey, she encourages people to have open conversations with their care team.

“We shouldn’t be offended,” Caudle said. “We should support you.”

Patients can also think of their primary care provider as the quarterback of their care team, Caudle said, and ask that doctor for help navigating opinions or diagnoses from specialists.

Cara Anthony and Blake Farmer, hosts of the HealthQ series, spoke with Caudle about the sometimes-awkward art of asking for a second opinion.

This article first appeared on 吃瓜不打烊 and is republished here under a .

When Lori Baute first learned about precautionary full-body MRI scans, she dismissed the idea.

“鈥奍 heard Kim Kardashian got one, and some other wealthy people,” Baute said. But at 59, she was worried about her long-term health. She has a family history of cancer, and she’s a critical caregiver for her aging mom and her adult brother with special needs.

After a close friend was diagnosed with bladder cancer, Baute decided to make an appointment with a clinic that offers full-body scans near where she lives in Ocala, Florida. Her results came back a week later. One major finding: She has lesions on her pancreas. “When I got that, I was really petrified,” she said.

Worried about pancreatic cancer, Baute shared the results with her gastroenterologist, who ordered a targeted MRI scan as a follow-up. That test showed the lesions were benign cysts.

Baute’s experience is becoming more common as companies pitch body scans directly to consumers as a way to detect cancer and other diseases early. But no major medical association 鈥� including the American Cancer Society and the American College of Radiology 鈥� recommends these scans for people without a very high risk of certain cancers.

And even medical screenings that doctors do recommend can carry some of the same reasons for caution.

This article first appeared on 吃瓜不打烊 and is republished here under a .

About half of rural voters identify with , a sprawling political movement championed by the Trump administration, but most said President Donald Trump’s healthcare policies have not benefited their communities, according to a from The Associated Press in partnership with KFF.

About 8 in 10 rural voters 鈥� an important voting bloc for Trump and fellow Republicans in recent elections 鈥� said the Trump administration’s policies have had a negative effect or no impact on the health of people where they live. Most MAHA supporters, 68%, also feel this way, according to the national survey of more than 2,000 rural registered voters.

The findings signal an apparent disconnect between the Trump administration’s MAHA-branded policy priorities and rural America’s perception of their reach and effectiveness.

Iowa pastor Mike Jager, 58, is a registered Republican and considers himself part of the MAHA movement. The Trump administration’s health policies have had “minimal” impact on the health of his community, Jager said, but he added that Trump’s health secretary, , is moving the needle “in the right direction.”

“It’s a beginning,” Jager said. “It’s a big ship to try and turn around and course-correct.”

Kennedy has used the MAHA label to support various agendas, including , , and investing in regenerative agriculture.

Jager lives in Sumner, Iowa, “less than a quarter mile from where the corn ends and the city begins.” He’s seen family members and neighbors develop diseases that he believes resulted in part from exposure to agricultural chemicals and consumption of unhealthy, processed foods.

In the June Republican primary for governor, Jager voted for Zach Lahn, a businessman and farmer, who ran on a MAHA platform and beat out Trump-backed U.S. Rep. Randy Feenstra. He plans to vote for him again in November.

Many Rural Voters Are Prioritizing Health Issues

About two-thirds of rural voters who support MAHA said it’s “extremely” or “very” important to them to vote for a candidate who does, too, while only 4 in 10 rural voters overall said the same.

Trump sought to seize on MAHA support during his campaign for another term two years ago. Now, amid tight midterm races, Kennedy has campaigned to galvanize the movement’s support. In May, he attended a MAHA bill signing with Iowa Republican Gov. Kim Reynolds, and in August, he went fishing with Lahn, posting about it on social media.

Yet the survey indicates voters are noticing “this weird split in the Trump administration” between what Kennedy messages and what Trump says and does, said David Peterson, a political science professor at Iowa State University.

“It’s this mix of things coming out of D.C., out of different pieces of the administration, that’s confusing people,” Peterson said.

In Iowa, concerns about what’s causing are “a big deal,” he said. For many people who identify with MAHA, being healthy includes taking on corporate agriculture and pharmaceutical companies that they think cause cancer, he added.

“The sort of populist messaging around that is appealing right now,” Peterson said.

In the poll, views on healthcare access and costs largely diverged along party lines. Most Democratic and independent voters said the Trump administration’s healthcare policies have had a negative impact on their healthcare costs and the health and well-being of people in their communities. Republicans were likelier to say there hasn’t been an impact.

Talking on the phone from her 200-acre farm in Carroll County, Iowa, 71-year-old Donna Klocke said that her husband had died from cancer and that she has neighbors who also have cancer.

“It’s just very prevalent,” Klocke said. “We’re in a farming community. We use chemicals and pesticides and all kinds of things that aren’t necessarily good for us.”

Klocke, a Democrat, said the MAHA movement is a good idea because she cares about being healthy, but she does not consider herself part of it and will not be voting for a candidate who represents the movement.

Kennedy, who was an anti-vaccine activist before entering politics and has sent to Americans about , scares her.

“Measles are coming back and polio,” Klocke said. “It’s the measles that really gets me. It’s like, do you not understand how dangerous it is?”

Survey Reflects Angst Over Healthcare

About half of rural voters said their communities don’t have enough doctors or other healthcare providers, and even more said there aren’t enough mental health workers specifically. The share of rural voters who said their community does not have enough hospitals increased to 35% from 21% in a similar question asked in a KFF-Washington Post survey in 2017.

And as with the general population, healthcare, gas, and grocery costs are top pain points. More than 6 in 10 rural voters said they were worried about healthcare costs.

The level of worry varied based on coverage, with rural voters enrolled in employer plans or Medicare less likely to be worried. The survey found that 80% of working-age rural voters on Medicaid were very or somewhat worried about healthcare costs. Last year, Republicans passed that cut over $900 billion in projected Medicaid spending over a decade and mandated new eligibility requirements.

Among rural voters who purchase their own insurance, such as the individual coverage plans available on Affordable Care Act marketplaces, 77% said they were worried.

In the tiny community of Lipan, Texas, west of Dallas, Kim Solis and her husband have a handyman-and-home-remodel business and get their insurance on the marketplace. Since Trump was elected again, their premium payment jumped from zero to $166 a month. Their copays went up, and their deductibles each increased by $2,000.

Solis, 62, said she worries what will happen if they get a big medical bill.

“Certainly, we’d be in a world of hurt trying to take money out of savings or getting it out of our 401(k) just to be able to do something about it,” she said.

Most MAHA Voters Are Also MAGA 鈥� But Not All

Like the general population, rural voters said they trust their own doctors and healthcare providers for health information over government agencies or officials, according to the poll.

Trust in Kennedy and Trump fell largely along partisan lines. About 10% of rural Democratic voters reported having a “great deal” or “fair amount” of trust in Kennedy, compared with 74% of rural Republican voters. About 5% of rural Democrats and 69% of rural Republicans said they trust Trump a “great deal” or “fair amount” for reliable health information.

While Make America Great Again and MAHA identities are “linked in a lot of ways,” the rising costs of healthcare and groceries pose a challenge for those committed to the MAHA principles that Kennedy promotes, said Peterson, the Iowa State professor.

Buying healthy food “becomes, 鈥業 can’t afford to do that because of Trump’s policies,’” he said.

In Stamping Ground, Kentucky, Alma Johnson, 65, works as night security at a horse farm. Johnson said gas had gone up but her overall cost of living had decreased since Trump took office.

Johnson voted for Trump in 2016, 2020, and 2024 and said she “pretty much” likes how Trump is running the country. But she said she is not a MAGA devotee, preferring to “think for myself.”

MAHA, however, is an easy sell for Johnson because, she said, she doesn’t think people should be able to buy junk food through the Supplemental Nutrition Assistance Program, or SNAP.

Still, she said she hasn’t seen much impact from the Trump administration’s healthcare policies, including the .

“It takes a long time to change people, their habits, their thoughts, or the things they do,” Johnson said.

This article first appeared on 吃瓜不打烊 and is republished here under a .

Eighteen months after his initial diagnosis, chemotherapy hadn’t slowed 21-year-old Mason Henderson’s rare brain tumor, which had spread to his spinal fluid. So he left his home in southeastern Texas to spend three weeks in a clinical trial in New York City.

But that failed, too, leaving a murky path for Henderson, whose cancer was so rare the World Health Organization had only in 2021. So early this year, Henderson’s doctors, evaluating his tumor’s deep genetic language, turned to a drug made by Merck and AstraZeneca called Lynparza.

It was not the standard of care for Henderson’s condition 鈥� there wasn’t really any standard, which is not unusual for rare cancers. And Henderson’s insurance would not pay for it, despite the careful justification given by the two specialists treating him.

“They have no guidelines for his cancer,” Henderson’s mother, Tabitha Lowe, said in a March interview with 吃瓜不打烊. “They’re discriminating against him because his cancer is so rare.”

Every year, tens of thousands of people 鈥� representing about a 鈥� are diagnosed with tumors that differ enough from frequently identified ones to be called rare. In determining whether to reimburse treatment for such ailments, insurers turn to Food and Drug Administration labels and expert guidelines.

But these rare afflictions often lack targeted, FDA-approved treatment options, even though in many cases, molecular tests offered by diagnostic companies and university labs can provide a strong suggestion of what will work.

“Insurance coverage routinely trails behind what genomic testing reveals about a patient’s cancer and what the science supports,” said Olivier Elemento, director of Weill Cornell Medicine’s Englander Institute for Precision Medicine.

Henderson’s neuro-oncologists, Jacob Mandel of the Baylor College of Medicine and Jessica Schulte of NYU Langone Health, decided to try Lynparza, also known by the generic name olaparib, in combination with chemotherapy. There wasn’t a wealth of evidence behind the drug but there was a “biologically reasonable” assumption it would help, Schulte said, because cells in tumors like Henderson’s have a flaw that drugs like Lynparza can target. Providers in several previous cases had seen brain cancers like Henderson’s respond well to the drug.

“In general, we try to base our treatment decisions on large patient studies” involving hundreds of patients, Schulte said. But large clinical trials will probably never be conducted for a cancer as rare as Henderson’s.

Schulte, who specializes in brain cancers in young adults, sees only a few of Henderson’s type each year, she said.

Mandel prescribed the drug on Jan. 16. Liviniti, Henderson’s pharmacy benefit manager, responded with a quick refusal on Jan. 30. Two weeks later, the company sent an explanation: “Lynparza is not approved for the diagnosis provided.” Out-of-pocket, the drug would cost about $8,700 per month, Lowe said. Liviniti did not respond to phone calls seeking comment.

Before his diagnosis, Henderson was a healthy, athletic young man with a big heart, faith in Jesus, and a tight group of friends, his mother said. At Evadale High School, north of Beaumont, Texas, Henderson played baseball and football and was homecoming king in 2022. After graduating, he worked at the local paper mill, spending his free time hunting, fishing, and exploring the woods on an all-terrain vehicle. He wanted to be a police officer, Lowe said.

Henderson was 20 on March 15, 2024, when his brother Gunner found him at the top of the stairs in the family home with his head in his hands. “He was in the post-seizure state,” Lowe said. “He couldn’t talk. Was crying. Trying to hug me. Could not communicate.”

At an emergency room in Beaumont, an MRI revealed a large tumor. He was transferred to Baylor St. Luke’s Medical Center in Houston and diagnosed with a form of brain cancer called diffuse hemispheric glioma (H3-G34 mutant).

Surgery a few days later cut out 90% of the tumor, but brain cancers are almost impossible to remove entirely, because of the delicacy of the tissue they’re embedded in, Schulte said.

After 16 months of radiation and chemotherapy, a September 2025 scan showed the cancer had spread to his spinal cord, a condition called leptomeningeal disease that usually proves fatal within a few months. Mandel contacted Schulte about a clinical trial she was leading. It consisted of 11 days of brutal craniospinal irradiation, which left Henderson exhausted. When it was over, the cancer was still there.

“The family was wonderful,” Schulte recalled. “They were trusting in their team, but they asked appropriate questions to make sure that we were thinking about Mason as a person.”

Coverage Refused

Lynparza, approved by the FDA in 2014 for ovarian cancer, works by interfering with tumor cells’ ability to multiply. After Liviniti, the pharmacy benefit manager, refused coverage for Henderson, his family turned to Jefferson County. Henderson’s stepfather, Jerry Lowe, flies helicopters for the county sheriff’s office.

The county, which had the final say on reimbursement because it pays claims directly for its employees’ family health coverage, also refused. When Henderson’s family appealed, the county review board authorized an independent medical reviewer to look at the case. The nonspecialist supported the board’s finding and recommended another drug, but Henderson’s doctors disagreed. The board didn’t respond to a request for comment.

AstraZeneca had also turned down the family’s request for a donation of the drug. By then it was March, six weeks after Lynparza was prescribed.

Cancers that start in the brain are unusual 鈥� only about 25,000 cases are diagnosed in the U.S. each year, compared with 320,000 breast cancers and 229,000 lung cancers. Only a few hundred people each year, mostly young adults, are diagnosed with Henderson’s type, according to Schulte.

Treatment options for diffuse hemispheric glioma are few; brain cancers in general are often excluded from clinical trials. They represent a relatively small market for a pharmaceutical company. Testing drugs against them is risky, because of the brain’s sensitivity, and difficult because the drug must pass through the tightly packed cell walls lining the blood vessels, known as the blood-brain barrier.

Still, drugmakers are increasingly homing in on narrower and potentially more accurate drug targets as science reveals more of cancer’s remarkable molecular diversity.

Under , the FDA has approved to be used for patients whose tumors have specific mutations, regardless of the organ where the cancer first appeared. These “tissue agnostic” drugs are still a tiny minority, but as genome sequencing becomes more common 鈥� order it for patients 鈥� insurers will have to keep up, Weill Cornell’s Elemento said.

Several U.S. research groups are hosting clinical experiments known as “basket trials,” in which mostly late-stage cancer patients are put on drug combinations based on tumor genetics, rather than the organ of origin.

The American Society of Clinical Oncology has recruited more than 3,000 patients into one of the biggest efforts, the Targeting Agent and Profiling Utilization Registry, , which began in 2016. It provides off-label treatments at no cost to advanced-staged cancer patients at more than 270 U.S. oncology practices.

About half the participants have benefited, and in rare cases the treatment kept patients alive for a year or more or seemingly cured them, said Richard Schilsky, the program’s founder and its principal investigator until recently. The results have led to changes in several treatment guidelines, he said, and a change in guidelines “usually is sufficient to create a pathway to reimbursement by insurance.”

Research has uncovered “quite a few” cases in which Lynparza was effective against a variety of tumor types, Schilsky said. But like many clinical trials, TAPUR excludes patients with primary brain tumors 鈥� like Henderson’s.

Oncologists disagree on how broadly genetics discoveries will transform cancer diagnosis. Cancers are currently identified as breast, colon, lung, etc., because those are the cells that pathologists see when diagnosing a tumor, said Razelle Kurzrock, the associate director of clinical research at the Medical College of Wisconsin Cancer Center.

But that’s a “mistake of history,” she said. “You’re making the diagnosis based on the pathologist’s view of the surface of the cell rather than what’s actually driving the cancer.”

A Dutch father and son invented the first light microscope to peer at cells around 1590. The Human Genome Project finished in 2003. If genome-enabled next-generation sequencing, now used for molecular tumor scans, had come before the light microscope, “no one would look at organ of origin,” she said.

Kurzrock leads a clinical trial in which every patient gets individualized cancer therapy based on DNA, RNA, and protein patterns in their tumor. Instead of getting drug combination A or B, “in our trial everyone gets a different set of drugs,” she said. Physicians can instead use standard therapies, she said, and their patients are the study controls.

Other oncologists see limitations to purely genetic diagnosis. Certain cancer centers advertise by saying, “鈥榃e’ll sequence your tumor better than anyone else, and therefore you’ll live longer and do better if you come here,’” said Kathy Miller, a professor of oncology at Indiana University. “But the evidence doesn’t support those claims right now.”

鈥業 Wouldn’t Give Up’

In Henderson’s case, the problem was never diagnosis; Baylor clinicians identified his cancer type quickly. But its rarity and location made the tumor hard to fight, and the lack of financial help made it even harder.

On March 8, Tabitha Lowe went on Facebook, LinkedIn, and Instagram with photos of her son and descriptions of his plight. She tagged AstraZeneca, Liviniti, and the county board that had denied his reimbursement. “Rare cancer patients are denied treatment simply because their cancers are rare,” she wrote in one of the posts, which were shared hundreds of times.

“I hated to take this route, but when it comes to my kids there’s nothing I won’t do,” she told 吃瓜不打烊. “I’ve cried, I’ve stressed out, but I wouldn’t give up.”

The next day, AstraZeneca’s patient assistance program, which had turned down her request for the drug two weeks earlier, emailed her with good news: A bottle of 60 Lynparza pills had been shipped to her pharmacy. Company spokesperson Tara Parsell said patient confidentiality prevented her from commenting on its actions.

Lowe’s six-week battle had paid off. Now, “it’s in God’s hands,” she said in an April interview. By mid-April, however, Henderson could no longer walk. Then came issues with his speech. “It all happened so fast.”

On May 4, in the family’s living room, where his bed had been moved, Henderson died, after taking the drug for nearly two months. Hundreds attended his memorial service; their cars made a procession seven minutes long.

The family has created a college scholarship in Henderson’s name for graduates of the local high school. An online campaign and bass fishing tournament had raised nearly $24,000 by September. Willie Robertson of Duck Dynasty, professional pickleballer Tyson McGuffin, and pro fisherman Hank Parker donated items for a raffle. Country singer Mark Chestnutt sent two signed guitars, Lowe said.

“Faster treatment would have been better,” although it’s hard to know whether it would have extended Henderson’s life, NYU’s Schulte said.

“I will always wonder,” Lowe said in a phone interview this summer. “Cancer don’t pause while the paperwork’s in progress.”

“There’s something especially painful thinking about how much time I spent fighting healthcare instead of being with Mason,” she added. “I was forced to become a PBM, insurer, research expert, all while trying to be his mother.”

This article first appeared on 吃瓜不打烊 and is republished here under a .

Céline Gounder, 吃瓜不打烊’ editor-at-large for public health, discussed the findings of a recent cancer report on CBS News 24/7’s Mornings on Sept. 16. Gounder also discussed the potential of artificial intelligence to be used in developing biological weapons on CBS News’ CBS Mornings on Sept. 11.

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• .

吃瓜不打烊 Georgia correspondent Briah Lumpkins discussed a conservative Georgia congressional district that has remained supportive of President Donald Trump despite rising healthcare costs on WUGA’s The Georgia Health Report on Sept. 11.

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• Read Lumpkins’ “Rising Healthcare Costs Have Hit Georgia’s Most Conservative District. But Its Politics Are Unlikely To Change.”  

吃瓜不打烊 Florida correspondent Daniel Chang discussed in Spanish how gun violence affects children in Florida on Radio Bilingüe’s Línea Abierta on Sept. 10.

• , starting at 47:50.
• Read Chang’s reporting in “Where Florida’s Gun Violence Exacts Its Biggest Toll on Black and Latino Children.”

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Still, Montana’s health department decided last year that Hailstone is no longer eligible for low-cost disability health coverage through Medicaid. The department switched her coverage to the state’s Children’s Health Insurance Program, another Medicaid program 鈥� three months before she aged out.

Before making the decision, the state didn’t seek records from the medical team treating Hailstone, according to letters from those doctors reviewed by 吃瓜不打烊. Rather, the administrative ruling came after state officials learned the now-19-year-old had stopped receiving Social Security disability payments. She said she did that because she hoped to get healthy enough to work and save some money 鈥� beyond what’s allowed under the tethered to those payments. But her health changes day to day, and she said for now she’s still too sick to consistently work.

Hailstone, who lives with her mom, has been able to keep Medicaid coverage while they appeal the case. She said that without Medicaid she can’t afford the treatment to manage the aftermath of her cancer.

“It feels like this process was made to make you give up,” Hailstone said.

Patients with disabilities have long struggled with administrative hoops, blunders, and confusion when trying to qualify for federally subsidized health coverage because of their illness. Now, new federal Medicaid work requirements mean states face the additional task of deciding who qualifies for a medical exemption. That means reviewing medical cases for an even larger swath of Medicaid enrollees.

Attorneys, researchers, and advocates who specialize in public aid said disability cases like Hailstone’s 鈥� though separate from the incoming work requirements 鈥� are an indication that states aren’t ready. As a result, they said, more people will be denied coverage in an opaque process.

“This will be the story of millions of people,” said Anthony Wright, who heads Families USA, a national nonprofit that advocates for ways to make healthcare more accessible.

Jon Ebelt, a spokesperson with the Montana Department of Public Health and Human Services, said the state doesn’t comment on individual Medicaid cases.

An will have to meet the new rules requiring them to prove they’re working, going to school, or volunteering to keep their Medicaid coverage, according to the Congressional Budget Office. of those enrollees live with a chronic health condition, according to KFF. Some will be excused from those rules if they can prove they’re too sick to work.

More than 5 million people are expected to lose Medicaid coverage by 2034 because of the work requirements, according to the CBO.

Work Requirements Become Law

Many Republican policymakers and the Trump administration have touted Medicaid work requirements to preserve coverage for the neediest. Congress made that national policy through last year’s One Big Beautiful Bill Act and gave states until January 2027 to implement work-for-coverage rules.

Some states are starting those checks early. Montana began in July. Nebraska initiated work requirements in May.

In the federal law creating the work requirements, Congress allowed states to exempt people who have an illness that qualifies them as “medically frail.” Many states created plans for those judgment calls, only to be surprised when federal officials released rules for the requirements that went beyond what Congress outlined, by also requiring enrollees to prove their illness makes it too hard to work.

Families USA and other organizations have argued the new rules force states to set up a patchwork of systems that, together, would be larger and more complicated than the Social Security Administration’s own disability review system. Last year, that federal program cost to administer to roughly 7 million people nationally. For comparison, Wright said, the federal law provided $200 million for states to share as they implement the work requirements. States are paying contractors millions of dollars to prepare often already flawed public aid systems to meet the new standards.

In June, 25 states over the medical frailty rules, arguing they’re too hard for patients to meet and for states to assess. That case is ongoing.

Hailstone was diagnosed with blood cancer at age 10. Her intestines tore, which led to their partial removal. As a result, her body struggles to process food and she can face severe dehydration. She said lingering side effects from her cancer treatment can leave her mind foggy and cause her hands and feet to swell enough that it’s hard to grip a fork or walk across a room.

Cancer dominated nearly half her life. It left mental scars, too.

“Some days you feel fine and then you suddenly crash,” Hailstone said.

Hailstone and her mom live in Roundup, a central Montana town of roughly 2,000 people. They regularly make the nearly two-hour round-trip drive to Billings for specialized care. She typically has three medical appointments a week to see her physical and occupational therapists and a mental health counselor.

Hailstone said she’s lucky she has her mother’s help navigating Medicaid. Her mom, Kyla Hailstone, said that the state hasn’t clearly defined how it determined her daughter’s disability status and that its appeal process has been slow and dysfunctional.

Taya Hailstone would qualify for Medicaid based on her income if she can’t prove her eligibility for disability coverage. But that would mean proving she’s too sick to meet the work requirement 鈥� putting her in the same position of having to rely on a state review of her illness.

“If I lose this, this is life-changing,” Hailstone said.

鈥楾hings Fall Through the Cracks’

Hailstone qualified as disabled through the federal government as recently as 2024, about a year before the state said it was dropping her coverage. State officials can do their own medical review to determine whether someone meets the federal definition of a disability to access Medicaid.

“Whether that happens is always a bit of a crapshoot just based on state capacity,” said Megan Dishong, deputy director of the Montana Legal Services Association, which helps low-income people navigate public programs. “Things fall through the cracks.”

Ebelt said the state health department accepts disability decisions from the Social Security Administration. The state agency can conduct an internal disability determination if a person doesn’t have one from the SSA, but Ebelt said it doesn’t have to if a person qualifies for coverage another way.

“We are committed to treating every client with respect and helping those who are eligible receive appropriate Medicaid coverage,” Ebelt said.

Montana instituted a three-month grace period for the work requirements. State officials won’t begin disenrolling people for noncompliance until October.

a University of Michigan social policy professor who has studied bureaucratic obstacles to public benefits, said convoluted disability cases are common enough for attorneys to specialize in accessing aid.

“When we’ve designed public programs in ways that people can’t figure out whether they’re eligible without consulting lawyers, we’ve done something wrong,” Herd said. “That has huge, huge implications for what’s to come.”

Montana officials have said they’ll automatically review medical records that could help patients qualify for an exemption. Even so, the federal guidelines released in June mean patients will probably still face additional steps to guarantee an exemption.

Meanwhile, already overstretched doctors worry they’ll face the burden of judging whether someone’s illness qualifies them for a work exemption.

Dishong said that between now and October, Montana officials could offer more clarity on how the process will work. She said she’s worried the state will end up “with a slow-roll mess” instead.

“This is a problem that’s just starting,” Dishong said.

As for Hailstone, she’s now reapplying for Social Security disability payments. That aid would limit how much she can work. But it would also guarantee access to Medicaid.

Have you tried to prove your eligibility for Medicaid under new rules that require people to show they are working, going to school, or participating in another qualifying activity? Click here鈥痶o contact 吃瓜不打烊.

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That’s partly because Halver’s mother and aunt have had breast cancer. Her age and dense breast tissue also put her at higher risk.

Halver, who lives in Vancouver, Washington, said her doctor recommended she get an annual breast MRI, six months after her yearly mammogram. The scan would serve as an additional safeguard, since breast MRIs can detect abnormalities that mammograms miss.

Case in point, actress Olivia Munn had a breast MRI in 2023 that detected an aggressive form of cancer in both breasts, even though a recent mammogram had been clear, . Like Halver, Munn said her doctor recommended the MRI after a risk assessment score showed she faced a greater-than-normal chance of developing breast cancer.

Catching breast cancer early, before it spreads, improves survival rates, according to the . After Halver’s insurer preapproved the scan, she scheduled the MRI for September.

“Luckily, they find nothing,” Halver recalled.

Then the bill came.

The Medical Service

A breast MRI 鈥� short for magnetic resonance imaging 鈥� is a preventive and diagnostic tool that captures pictures of breast tissue in higher detail than a mammogram. MRIs may be recommended for patients at an increased risk for breast cancer, including those with dense tissue, a family history of breast cancer, or certain genetic markers.

But the scans are generally not recommended for women considered at average risk, according to the , because they can also yield false positives, subjecting patients to unnecessary follow-up tests and procedures.

Breast MRIs are also used to diagnose cancer when an abnormality is detected during a mammogram, and they can determine the cancer’s stage after diagnosis.

The Bill

$1,205: After an insurance payment of $13.90, the patient was responsible for $1,191.10. The clinic also charged $65.60 for “Injectable/Oral Med,” often used to keep patients still or less anxious during the scan. Halver’s insurance covered about half of that charge.

The Billing Problem: Not Always Preventive

When Halver received the bill from Vancouver Clinic, where the MRI was conducted on Sept. 26, she was confused.

She knew that the Affordable Care Act requires health plans to cover preventive care, such as Pap smears and mammograms, at no cost to patients.

What’s more, Halver’s breast MRI had been recommended by her doctor and preapproved by Blue Cross Blue Shield of Texas, of which she is a beneficiary through her employer-sponsored plan. The whole point of it was preventive. That’s why she assumed it would cost her nothing.

To make things more confusing, requires many health insurers to cover breast MRIs.

“I’ve had many phone calls trying to understand” the bill, Halver said.

It came down to this: The U.S. Preventive Services Task Force, a panel of outside experts that advises the federal government, is charged with recommending which screenings health insurers are required to cover at no cost to patients, and preventive breast MRIs don’t fall into that category.

The task force “the current evidence is insufficient to assess the balance of benefits and harms” of breast MRIs for women with dense breast tissue “on an otherwise negative screening mammogram.”

The federal guidelines are different for patients whose mammograms detect an abnormality, said Cathy Peters, senior director of state and local campaigns at the American Cancer Society Cancer Action Network.

In these cases, Peters said, by the federal Health Resources and Services Administration specify that additional imaging, such as ultrasounds and MRIs, are preventive.

After an abnormal mammogram, these services are recommended “to address findings on the initial screening mammography” and to “complete the screening process for malignancies,” according to HRSA.

Those guidelines are a step in the right direction, but women who have not had an abnormal mammogram may end up “running into a big bill,” Peters said. This can be a deterrent when it comes to future screenings, she said, because when “you get hit with that once, you’re going to be very careful the next time you go.”

Some states have enacted laws that require insurers to cover breast MRIs, Peters said, but they generally don’t benefit patients like Halver who are enrolled in large, employer-sponsored insurance plans. These “self-insured” plans are regulated by the federal government, not by state lawmakers.

“Sadly, these state-by-state laws,” Peters said, don’t “fix the federal problem.”

The Resolution

Blue Cross Blue Shield of Texas declined to answer questions about Halver’s benefits or bill.

Halver appealed the insurer’s coverage determination, and in July she received a letter indicating that her appeal was denied.

Halver said she contacted her employer’s human resources department earlier this year and learned that mammograms are covered as a preventive screening under her health plan but breast MRIs are not. That means her annual breast MRI will be subject to deductibles, coinsurance, and other cost-sharing requirements.

In this case, the cost of Halver’s breast MRI was applied to her $3,300 annual deductible, an explanation of benefits from her insurer showed.

“I think I’m on the hook for this bill,” she said.

And because her risk of breast cancer is high, she said, “that’s a guaranteed bill every year.”

The Takeaway

If your doctor or medical provider recommends an annual breast MRI in addition to an annual mammogram, consider researching your state’s coverage rules on the . The nonprofit organization maintains a map with up-to-date information on state laws about breast cancer screenings. Depending on where you live and what type of health plan you have, preventive breast MRIs might be covered at no cost.

If it turns out you could be on the hook for a future bill, there are a few things you can do beforehand to potentially lower your out-of-pocket costs.

Ricki Fairley, co-founder of Touch, the Black Breast Cancer Alliance, recommended first finding a patient navigator at the hospital or cancer center to assist you.

She urged women to seek out resources in their communities or through national advocacy groups, including Touch, to find ways to lower screening costs. Programs funded by some states can help offset the cost of breast cancer screenings for low-income patients, Fairley said.

Beyond that, shop around for the best price. Freestanding imaging centers may charge less for a preventive breast MRI than a hospital. If possible, also consider scheduling the MRI at the end of your health plan’s deductible year. If you’ve already met your deductible, you could end up owing less out-of-pocket.

Bill of the Month is a crowdsourced investigation by 吃瓜不打烊 and that dissects and explains medical bills. 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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For six months in 2022, Manski received monthly infusions of nivolumab to fight advanced melanoma. The drug ruined his thyroid gland, he said, requiring him to go on a special medication for the rest of his life, and caused severe dryness in his eyes, lips, and mouth. The FDA’s protocol for the drug called for an entire year of treatment, but Manski said his oncologist couldn’t explain why. It’s FDA-approved, “so that’s what we use,” she said.

By that point, Manski showed no cancer signs or symptoms, and after reading a lot of medical journal articles, he concluded that the intense side effects probably meant the treatment had done about all it could do.

“She couldn’t tell me a year was the optimal dose. Nobody could,” he said in a June interview from Spain, where he received an award for his economics work. “So I made my own diagnosis. I took myself off.”

Manski’s decision was in line with what doctors in , , were already doing: giving lower doses of nivolumab, sold under the brand name Opdivo, and of a similar drug, pembrolizumab (Keytruda), or giving them for shorter periods or over longer intervals than the FDA recommended. In India, oncologists found that of nivolumab had a powerful impact on several cancers.

“There is incredible uncertainty in drug dosing,” Manski said.

His experience impelled him to join an informal yet determined community of researchers, doctors, and patients pushing for extra studies to help patients and doctors find the right dosage for an array of cancer drugs. They point to evidence suggesting that taking smaller doses of some cancer drugs, or remaining on them for shorter periods, could save billions of dollars and prevent some of the worst side effects.

In a , 43% of U.S. adults said they had skipped their medication in the past year because of cost. A Vanderbilt University study of Medicare enrollees released in 2022 found that went unfilled at the pharmacy.

But dose-optimization studies rarely occur after the early stages of a drug’s development, or once it’s on the market. By then, few parties in the U.S. healthcare system 鈥� beyond patients 鈥� have a stake in learning that a lower dosage could work as well while causing less harm.

Pharmaceutical companies have shown little interest in dialing back recommended dosages. Once they set the price for a drug, the more sales, the more profit. One study that examined 29 expensive cancer drugs estimated that if minimum necessary dosages had been used in 2024, the U.S. healthcare system could have saved roughly $31 billion.

“Decisions aren’t always made with the best needs of the patients in mind. The bottom line is another reason,” said Matthew Goetz, a breast cancer researcher at the Mayo Clinic Comprehensive Cancer Center.

Merck last year sold nearly $32 billion worth of pembrolizumab, a drug that’s FDA-approved for more than 40 cancer conditions. It accounted for almost half of Merck’s drug sales. Bristol Myers Squibb, meanwhile, brought in $10 billion from nivolumab, which works similarly to pembrolizumab in tweaking the immune system. Three important but often toxic breast cancer drugs 鈥� Ibrance, Verzenio, and Kisqali 鈥� at Pfizer, Eli Lilly, and Novartis by $4.1 billion, $5.7 billion, and $4.8 billion, respectively.

Pembrolizumab is usually prescribed at a fixed dosage; nivolumab is sometimes prescribed at a fixed dosage, sometimes based on the patient’s weight. If the patient is dosed less than what’s on the label, drugmakers generally get less money. And they aren’t the only ones who lose out.

Through a federal program known as 340B, created in 1992 to subsidize the treatment of low-income patients, hospitals that treat a certain percentage of low-income patients can buy drugs at a steep discount, while charging insurers or patients more. For Medicare patients, doctors are paid an additional for each infusion.

From 2010 to 2024, cancer drug revenue to doctors and hospitals increased from about $9 billion to nearly $36 billion, according to research by . About half those profits came from immunotherapy drugs like pembrolizumab and nivolumab.

“Pembrolizumab is ,” said Mark Ratain, a professor of medicine and chief hospital pharmacologist at University of Chicago Medicine. “That’s why you don’t see hospitals in this country running to do trials that test lower doses.”

Merck spokesperson Julie Cunningham said the drug’s dosage recommendations were based on extensive testing. “In a life-threatening and challenging disease such as cancer, it is critical that the dosing for a cancer therapy is established through well-designed clinical trials,” she said. “Changes in dose or duration that have not been similarly studied may potentially compromise the therapeutic effect.”

Still, some oncologists start their patients off slowly on any of a variety of cancer drugs, although there may be concerns about lawsuits by a patient or their survivors over a prescription of lower-than-labeled dosages.

Kathy Miller, a professor of oncology at the Indiana University School of Medicine, routinely starts metastatic breast cancer patients with 400 milligrams of Kisqali daily for three weeks (with one week off), rather than the 600 milligrams recommended on the label. Sometimes patients ask for the standard dosage.

“I have to tell them, 鈥業 don’t want to kill you,’” she said.

Insurers routinely challenge her lower-dosage prescriptions, Miller said, presumably because price rebates from the drug company are set to the standard dosage. To avoid endless phone battles with insurers, she prescribes 600 milligrams but tells her patients to take only two of the 200-mg pills and save the third for the next cycle.

Follow the Cures 鈥� And the Money

On May 31, at the annual meeting of the American Society of Clinical Oncology, or ASCO, at Chicago’s McCormick Place convention center, most of the audience of 8,000 rose in a prolonged standing ovation for the experimental drug daraxonrasib. Patients with pancreatic cancer who took the drug, presented that day, lived nearly twice as long 鈥� a median of 13 months 鈥� as those receiving chemotherapy.

The next day, in a slightly smaller hall, Amol Patel, a medical oncologist from New Delhi, discussed studies in various cancers in which 20- or 40-mg doses of nivolumab biweekly 鈥� one-sixth or one-twelfth the recommended dosage 鈥� gave Indian patients several months to a year longer survival than patients who underwent chemotherapy, and with fewer side effects.

Fewer than 100 people attended Patel’s talk.

The ingenious development of daraxonrasib was big news, since pancreatic cancer has been a death sentence until now. But from a global perspective, the news out of India might be just as important.

At the ASCO meeting, “the focus is always on the shiny new drug,” said Daniel Goldstein, an oncologist and drug policy researcher at the Rabin Medical Center in Israel who has fought for a decade, with some success, to lower pembrolizumab dosages in hospitals there and in other countries. “It can be quite lonely to be us,” he said, adding that he’s seen increasing appreciation of his work.

The data from India offered a glimpse of what could be. However, the studies Patel referred to compared ultralow-dosage immunotherapy to older chemo drugs; none compared ultralow doses against standard nivolumab or pembrolizumab treatments. In India, this would be a sterile exercise, because full-dose treatments are beyond the reach of any but the very wealthy, said Vanita Noronha, an oncologist at Tata Memorial Hospital in Mumbai.

Bristol Myers Squibb, or BMS, to make its drugs available in lower-income countries. But the company hasn’t been involved in the lower-dose nivolumab trials and, in a statement to 吃瓜不打烊, said the evidence suggested that or shorter duration harmed patients.

While not all U.S. oncologists agree with BMS’ assertion, the Indian data is, to most, a mere curiosity. “Can we really give 20 milligrams as opposed to 240?” asked Jessica Bauman of the Fox Chase Cancer Center in Philadelphia. “The only way we know for sure is a randomized study between the low dose and the highest.”

And such trials are unlikely to occur. That means only poorer countries are going to host “this groundbreaking research,” said Ratain, who is also a cancer doctor at the University of Chicago Medical Center. “The Indians may have better immunotherapy than we do.”

Clinicians in Europe, where maximizing healthcare dollars has long been a priority, have taken a middle course, studying lower, but not ultralow, doses of immunotherapy.

Pulmonologist Michel van den Heuvel at Utrecht University is comparing the standard nivolumab dosage for lung cancer patients with one that is as much as 50% lower. He also considered giving the low doses half as frequently, but that would have raised ethical concerns and led to a more cumbersome research protocol, van den Heuvel said.

In the United States, researchers led by a group at the Dana-Farber Cancer Institute are taking another tack: who’ve done well on 27 weeks of pembrolizumab can stop taking it, rather than doing the additional six months per FDA protocol.

At the Veterans Health Administration, which has more leeway in testing money-saving medical procedures, doctors saved $1.5 million, about 10% of the previous pembrolizumab cost, over two years at three Veterans Affairs hospitals where they implemented a pilot program to dose patients less frequently, said Garth Strohbehn, a University of Michigan oncologist who also works at the VA.

It saves money and requires fewer visits for veterans who often live hours from the hospital, he said. “It also helps other patients because it opens more slots for infusion.”

Julie Gralow, ASCO’s executive vice president and chief medical officer, has made testing dosage a priority. She’s working with scientists in India on an ambitious clinical trial to compare standard nivolumab with four lower dosage levels.

She’s also leading an , supported by the federally funded Patient-Centered Outcomes Research Institute, to see whether breast cancer patients can be effectively started on lower doses of the drugs Kisqali and Ibrance, which, along with Verzenio, are in a class of key breast cancer drugs known as CDK4/6 inhibitors.

“We want to maintain efficacy. But we also want patients to have excellent quality of life,” she said. Especially for patients with advanced cancers, where absolute cure is unlikely, “it’s our job to make sure we’re not compromising quality of life with higher doses that are unnecessary.”

In 2021, at Ratain’s urging, Richard Pazdur, who led the FDA’s cancer drug division for many years, launched , intended to get companies to conduct dosing studies that are more precise before launching the large clinical trials they use to obtain FDA approval for new drugs.

The agency issued for dosing studies in 2024 and has incorporated Project Optimus principles into the approval process for new cancer drugs, said Health and Human Services spokesperson Emily Hilliard. For example, two dosing regimens were evaluated for each of four lung cancer drugs (fam-trastuzumab deruxtecan, tarlatamab, zongertinib, sunvozertinib), and the lower dose with fewer toxicities was approved in each case, she said.

The FDA usually can’t compel a drugmaker to conduct dose-ranging studies after a drug’s approval, Hilliard noted. And by law the agency does not influence drug pricing, she said.

Future drugs should have better dosage information, Bauman said, but “newer drugs will probably be just as expensive at lower doses.”

Financial Toxicity

Verzenio’s side effects made Allegra Warfield feel so sick, tired, and bewildered, she said, that she considered suicide. She switched to Kisqali, which was tolerable until last September, when coverage of the drug stopped despite her monthly premium payment of $6,000. The cash price for Kisqali was at least $16,000 a month.

After fighting her insurer for three months, Warfield, 42, sold her house and belongings in Palm Desert, California, and moved with her fiancé to Durham, North Carolina, where they’d found what they considered a reasonable insurance plan.

The cancer, the side effects, and the unpayable bills were bad enough. The lack of good answers for her treatment made everything worse, she said.

“I was left to research these medications on Facebook and Reddit. The only people talking about the daily reality of these drugs were other patients,” she said. “But I wanted the studies. I wanted practical guidance.”

Stories like these launched a new life mission for Kelly Shanahan, who was an OB-GYN in South Lake Tahoe, California, until side effects from a breast cancer drug caused her to lose sensation in her hands. Unable to practice medicine, Shanahan became a patient advocate who works with a group called the Patient-Centered Dosing Initiative. In 2021, Shanahan developed profound fatigue (“worse than caring for a newborn baby while being on call in my solo practice”) within a few weeks of going on Ibrance. Lowering the dosage caused her worst symptoms to lift, she said.

After gathering countless anecdotes, her group has approached drug companies seeking data 鈥� so far with little success 鈥� that might indicate what percentage of patients have needed dosage reductions, and how they fare on lower doses.

“If going down two dose levels cuts effectiveness by 50%, patients need to know that while making decisions. If it doesn’t, they need to know that,” Shanahan said 鈥� even if it means “the companies won’t make as much money.”

Shanahan suggested the data could be found in clinical trials and postmarket studies. But if drug companies won’t provide the necessary studies, Manski said, governments should.

“The knowledge to be gained is a common good,” he said.

Has an insurance company or pharmacy benefit manager refused to cover a drug an oncologist recommended or prescribed for you or a loved one because the cancer is unusual or rare and lacks clear guidelines? Click here to contact 吃瓜不打烊’ reporting team.

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