Drugs Archives - 吃瓜不打烊 /tag/drugs/ 吃瓜不打烊 produces in-depth journalism on health issues and is a core operating program of KFF. Tue, 20 Oct 2026 13:24:16 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.11 /wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=32 Drugs Archives - 吃瓜不打烊 /tag/drugs/ 32 32 257378068 As Politicians Argue About China, US Patients Find Cutting-Edge Treatment There /health-industry/china-cancer-drugs-foreign-travel-pharma-biotech-fda-regulation-clinical-trials/ Tue, 20 Oct 2026 09:00:00 +0000 /?p=2296669 Until recently, a Manhattanite might venture no more than a few dozen blocks to find the world’s most sophisticated cancer treatment. Cutting-edge American medicines have helped reduce the U.S. cancer death rate by since 1990, and New York City hospitals deliver some of the best care in the country.

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.

A photo of Max Doppelt with his mother, Debbie.
Max Doppelt has organized care for his mother, Debbie Doppelt, since her cancer diagnosis in 2023. (The Doppelt family)

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.”

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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

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More Medications, More Risks. If You鈥檙e Worried, Start a Deprescribing Discussion. /aging/healthq-deprescribing-medication-mix-drug-risks-polypharmacy-talk-to-doctor/ Tue, 20 Oct 2026 09:00:00 +0000 /?p=2295885&preview=true&preview_id=2295885
(Maria Fabrizio for WPLN and 吃瓜不打烊)

For nearly three years, Jonathan Bledsoe of Reading, Pennsylvania, took one prescription to stabilize his mood and one to keep his cholesterol in check, among a handful of other medications.

“You wouldn’t think you would have to be your own advocate and look out for yourself as far as managing your medications,” the Marine veteran said. “But when you wake up one morning and what you pee comes out the color of fresh brewed coffee, there’s an issue.”

He took his concerning symptoms back to his multiple doctors and learned the interaction between his medications was starting to damage his liver. After he changed medications, his liver and kidney function returned to normal.

Adverse drug interactions are becoming a bigger health concern as more people take multiple medications, said Amanda Mixon, a hospitalist and associate professor of bioinformatics at Vanderbilt University.

The percentage of Americans over 65 taking five or more medications, known as polypharmacy, nearly doubled from 2000 to 2020, according to a study published in . Now, more than a third of older adults are taking five or more medications a day.

Mixon said she sees older patients with an average of 16 medications, often from multiple prescribers and pharmacies.

“As you accumulate more and more medications, the chance of them interacting with each other and having bad interactions increases,” Mixon said. “As these medications get added sort of progressively, that can accumulate over time, and then people are having more side effects.”

The QTip:

If you’re taking medications and supplements, keep your own up-to-date list and have it with you.

If you’re concerned about your medications, here’s what to know:

There’s No 鈥楿nicorn Pharmacist’

Sometimes, a medication intended to treat one issue leads to many more, known as a “prescribing cascade”: A prescription for the initial symptom causes a side effect, then that side effect needs to be treated. Eventually, the combination of meds may cause other issues that require yet another medication.

For instance, Mixon said, heart failure patients take a water pill to reduce fluid retention. As a result, the constant need to urinate can lead to incontinence, which is treated by another medication.

“We do an amazing job of treating. We are great at diagnosing, and medicines have an amazing role in increasing our longevity as humans,” said pharmacist . He’s the CEO of the North Carolina-based consulting company GeriatRx, which focuses on helping patients get off unnecessary medications. “It’s not the intent of our providers to overtreat. It’s just what we’ve been trained to do.”

When multiple prescribers are involved, they may not be aware of the patient’s other medications, he said, especially if the health providers are affiliated with different health systems that have separate patient records.

“Do not assume that someone is checking all of these things in the background. There isn’t this magical unicorn pharmacist just making sure everything is safe. Yes, even at the local pharmacy,” Canterbury said. “So make sure, if you notice something is off, that you advocate for yourself.”

A Shift Toward 鈥楧eprescribing’

“Deprescribing,” the process of intentionally tapering off medications, in the past decade, alongside the corresponding rise of polypharmacy and the associated health risks.

The science on how to taper patients safely is newer and still not widely taught in medical schools, Canterbury said.

He said patients who are worried about taking multiple medications 鈥� especially people experiencing a new symptom or an unexpected side effect 鈥� should start a conversation about deprescribing with their specialists or primary care providers.

“I promise you, they don’t bite,” he said. “Because you’ll be surprised that the more you bring up stopping a medication, the more willing they are to actually have that dialogue and help you get off of it if you don’t need it.”

The goal isn’t kicking as many meds as possible, Canterbury said 鈥� it’s patient safety. With age, bodies metabolize medications differently, he said, increasing the likelihood of harmful side effects like constipation, diarrhea, falls, and memory loss.

Keep a Medication List

Many pharmacists and doctors agree on the value of keeping an updated medication list, including the vitamins and supplements you’re taking. While there are QR code bracelets and medication tracking apps, sometimes the easiest strategy is an old-fashioned piece of paper.

“Everyone needs a medication list in their pocket,” said pharmacist Jen Hammons, director of rural health advancement at the Appalachian College of Pharmacy in Virginia. “If you can’t commit it to memory, you need to have a list.”

People and Policy

Health and Human Services Secretary Robert F. Kennedy Jr. has championed weaning Americans off psychiatric medications that he says are overused, a stance that has polarized the medical community. This year, the Centers for Medicare & Medicaid Services that clarifies how physicians and pharmacists can be paid for their work reviewing medications and helping patients taper off when appropriate. Previously, physicians reported uncertainty over whether they could get paid for deprescribing, which can be a time-intensive process.


Katherine Ruppelt and Emily Siner at Nashville Public Radio contributed to this report.


HealthQ is a health series from reporters Cara Anthony and Blake Farmer, approachable guides to an unapproachable healthcare system. It’s a collaboration between Nashville Public Radio and 吃瓜不打烊.

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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

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Readers Are Pleading To Make American Healthcare Greater /letter-to-the-editor/readers-plead-make-american-healthcare-greater-dementia-care-sedation-er-triage-upcoding-october-2026/ Mon, 19 Oct 2026 09:00:00 +0000 /?p=2295882&preview=true&preview_id=2295882 Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.


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


吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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

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Four Red Flags and One Truth Amid the Peptide Hype /public-health/peptide-hype-experimental-unproven-drugs-red-flags/ Mon, 19 Oct 2026 09:00:00 +0000 /?p=2294661 Experimental peptides have become darlings among influencers, chiropractors, and doctors focused on longevity, antiaging, or “body optimization,” even though the FDA hasn’t approved them for safety or effectiveness. Health secretary Robert F. Kennedy Jr. and other leaders of the Make America Healthy Again movement have pushed to make unproven peptides more accessible — and they’ve gained traction.

On Oct. 14, a temporary “” appeared on a White House docket, proposing to allow licensed pharmacies to make and sell certain unapproved peptides to people. Scientists at the FDA had advised against the measure at a , warning that the drugs hadn’t been adequately vetted in clinical trials.

A panel that advises the FDA disagreed, however, voting to loosen restrictions. Many of the panel members are new appointees with in the peptide industry. In an email, Department of Health and Human Services spokesperson Emily Hilliard said that every committee member satisfies the FDA’s ethics requirements.

“I voted ‘yes’ for patient safety, the greater good, and medical freedom,” Haleem Mohammed, one of the new committee members, said at the . He’s the chief medical officer of a men’s clinic that sells peptides, Gameday Men’s Health.

To make good decisions, consumers need to rely on accurate information, but much of the hype around peptides is misleading. 吃瓜不打烊 flags four misleading phrases commonly used by those promoting peptides — and one truth.

Red Flag: Peptides aren’t drugs.

Gary Brecka, a co-chair of the MAHA Action committee, says peptides aren’t drugs of his podcast. He talks about using them to “help regulate cortisol, improve circulation, all kinds of things.” When peptides are used to treat, prevent, or cure conditions, or to affect the body’s function, they are, , drugs.

“Peptide” is a general term for substances that are smaller than proteins but made of the same building blocks. Humans make many peptides, including insulin. Insulin is a drug when people inject it to regulate blood sugar.

“Most of the drugs we have had some antecedent in nature,” said Jacob Sherkow, a professor of law specializing in biotechnology at the University of Illinois Urbana-Champaign. “Heroin is natural. No one in their right mind would call it not a drug.”

Brecka did not respond to requests for comment, but Chris Woodward, a public relations representative for him, said in an email that the health issues discussed on Brecka’s podcast do not constitute medical advice.

Red Flag: Peptides are safe because they’re natural.

Peptide promoters that peptides are safe because they’re natural. This clip of Brecka’s discussion with Brigham Buhler, a co-author of The Peptide Revolution and owner of a that sells peptides, is an example. Some influencers go further, saying that peptides are safe because they’re made by the human body. Buhler did not respond to requests for comment.

It’s murky territory. One of the most popular experimental peptides, BPC-157, was developed by Croatian scientists who isolated what they called “body protective compound” from gastric juices in the stomach lining. However, researchers have been unable to find a trace of BPC in the human genome, meaning it’s not made by humans, said Katrin Svensson, a peptide scientist at Stanford University. Researchers in Taiwan suggest the peptide is produced by stomach microbes, according to .

Even if BPC-157 and other peptides exist in nature, Svensson said, “natural things can be toxic.” People have died from taking , for example. And drugs considered safe can still make people feel ill. To learn about safety, and whether the benefits of a drug offset the side effects, researchers conduct placebo-controlled trials. These reveal problems that might not be obvious in the short term, such as liver damage, as well as underlying conditions that could turn minor issues into something serious.

The FDA is considering lowering restrictions on BPC-157 and five other experimental peptides that have not undergone high-quality clinical trials and are not FDA-approved. “I am excited about peptides too,” said Svensson, whose lab studies several peptides that she hopes to develop into drugs. “But,” she added, “you need to show they’re not harmful.”

Red Flag: These peptides treat illnesses and heal injuries.

Kris Wusterhausen, one of the new appointees to the FDA advisory panel, that the experimental peptide BPC-157 “can reduce [acid] reflux disease” and treat “neurologic disorders.” He’s the founder of an antiaging company that sells “clinically guided peptide treatments.” He did not respond to requests for comment.

Such claims are common among peptide promoters who say that various experimental peptides treat muscle injuries, covid, inflammatory bowel disease, and more. But vanishingly few clinical trials have been conducted.

A summary of a small clinical trial testing BPC-157 as a treatment for inflammatory bowel disease was published in 2005, but it lacked critical details about how the study was conducted. FDA scientists who called it “inadequate.”

Another concluded that BPC-157 relieved knee pain for 14 of the 16 patients involved, but it lacked a control group, meaning the participants might have felt better because of other factors, or their pain simply resolved over time.

In a 2025 on BPC-157 as a treatment for musculoskeletal injuries, researchers warned that it should be “approached with caution” because of a lack of evidence. Flynn McGuire, a physical rehabilitation doctor at the University of Utah and an author of the review, said anecdotes about people having miraculous recoveries are even less reliable.

He has told patients he won’t prescribe BPC-157 until quality studies are conducted. “People want new things quickly,” he said, “but medicine and science just don’t work fast.”

Peptide enthusiasts also tout laboratory studies, such as a particular peptide stimulating blood vessel growth. Such research is critical, but it doesn’t speak to safety, efficacy, or off-target effects in people, like fueling cancerous growths. Human biology is complicated, which is why most substances that show promise in early experiments fail in clinical trials.

Red Flag: Peptides can’t be patented.

A post on X from Robert F. Kennedy Jr. that reads, "FDA’s war on public health is about to end. This includes its aggressive suppression of psychedelics, peptides, stem cells, raw milk, hyperbaric therapies, chelating compounds, ivermectin, hydroxychloroquine, vitamins, clean foods, sunshine, exercise, nutraceuticals and anything else that advances human health and can't be patented by Pharma. If you work for the FDA and are part of this corrupt system, I have two messages for you: 1. Preserve your records, and 2. Pack your bags."
Before taking the helm of the Department of Health and Human Services, Robert F. Kennedy Jr. on X. (Screen grab of X)

A few months before Kennedy took charge at HHS, on the social media platform X that the FDA hindered access to peptides and other alternative therapies because they couldn’t be patented. It’s a common misconception about peptides: In an about the drugs, researchers found many posts suggesting that mainstream medicine has sidelined peptides because pharmaceutical companies cannot patent the substances and therefore can’t turn a profit.

Yet hundreds of peptide patents are listed in the U.S. Patent and Trademark Office database. A patent on an early formulation of BPC-157 is .

“One cannot obtain a patent on the natural thing itself,” Sherkow said, “but if you slightly modify it, link it to something that allows me to inject it, formulate it to be more stable, all of that stuff is patentable and is being patented.”

Peptide patents can be lucrative. Pharmaceutical companies are suing one another over patents surrounding GLP-1 peptides, the basis of Ozempic and other such weight loss drugs. The market for those medicines is projected to within the next decade, according to the investment bank Morgan Stanley.

So why haven’t pharmaceutical companies invested in clinical trials on popular peptides? Clinical trials cost millions of dollars, so companies first must be convinced the drugs look promising enough for FDA approval, as well as have an edge over current medications.

Companies conduct experiments before investing big bucks. They may have done so for certain peptides and been discouraged by the results, Svensson said.

Pinchas Cohen, a gerontology scientist at the University of Southern California, said investors backed out of funding trials on a peptide he helped discover, MOTS-c, because they worried its use overlapped with GLP-1 medications. “Investors felt we couldn’t compete with that,” he said.

Kennedy’s push to make experimental peptides more accessible might make clinical trials even more unlikely, researchers say, because compounding pharmacies wouldn’t need FDA approval to sell the drugs for human use.

In a letter to the FDA, the pharmaceutical trade organization PhRMA advised against easing restrictions on unapproved peptides, saying it would “erode incentives for manufacturers to undertake the substantial time and cost required for FDA approval.”

True: Americans aren’t as healthy as they could be.

Kennedy and other leaders of the MAHA movement are right when the U.S. spends per person than any other nation and ranks below all other wealthy nations in . They also rightly note the high cost of treatment. Six in 10 U.S. adults said they worried about affording prescription drugs in a , with 4 in 10 saying they’ve skipped doses or taken other measures because of the price.

Researchers have outlined policies to lower healthcare costs and improve public health, such as limiting and improving access to . What’s not on the list: skipping clinical trials to sell unproven treatments that could harm people.

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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

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People Say These Peptides Hurt Them. Their Stories Are Muffled in MAHA鈥檚 Push for Medical Freedom. /public-health/peptides-experimental-drugs-patient-harms-maha-medical-freedom/ Tue, 13 Oct 2026 09:00:00 +0000 /?p=2295350 After the third day of squirting an experimental drug up his nose, Dylan Meetze felt horrible.

“It was like I was underwater, like it took the most to do anything,” he said.

Meetze stopped taking the drug but endured fatigue and anxiety for months afterward, and his eyes and muscles twitched, he said.

He had taken BPC-157, a peptide drug popularized by podcasts about wellness, longevity, and what’s called “body optimization.” “Peptide” is a general term for substances that are smaller than proteins but composed of the same building blocks. Dozens of , including insulin and GLP-1 weight loss medicines, have garnered approval by the Food and Drug Administration. But BPC-157 and many others have not because they haven’t undergone clinical trials.

This fact hasn’t stopped online influencers from promoting them as remedies for muscle injuries, gut issues, covid, and more. Use of BPC-157 is growing in the U.S., particularly among white males, according to a of millions of de-identified electronic health records. Since 2020, the analysis, which hasn’t yet been published in a peer-reviewed journal, found that more than 1,000 people told doctors they had used the drug.

Meetze said he decided to take BPC-157 after listening to Andrew Huberman, a Stanford neuroscientist with more than 16 million followers on YouTube, Instagram, and TikTok, who talks up peptides frequently . Studies in mice suggest that BPC-157 helps muscles heal and has “very high safety profiles,” Huberman , “at least, with respect to the lethal dosing.” His guest on , Craig Koniver, a doctor who sells peptides through his wellness clinic, called BPC-157 “super safe” and recommended it for “anyone who’s working out on a regular basis.” Koniver did not respond to requests for comment.

Huberman didn’t respond to multiple queries from 吃瓜不打烊, but an automatic reply on his Huberman Lab website that says the podcast doesn’t constitute medical advice: “Any reliance on information provided through the podcast is solely at the user’s own risk.”

Hoping BPC-157 might help him advance as a weightlifter, Meetze said he bought the drug last year from an online vendor, Researchem. A chemical supply company with that name sells experimental peptides , warning that the substances are “solely for laboratory research” and are “not intended for human consumption.” (It lists an address in Hillsboro, Oregon, that corresponds to a shared office space. A receptionist at the space said Researchem wasn’t registered there, and multiple queries from 吃瓜不打烊 to the email address listed on the website went unanswered.)

Companies are required to warn that experimental peptides, which haven’t been approved by the FDA, are for research use only. But many companies may soon be permitted to drop the warning because of a push by health secretary Robert F. Kennedy Jr. to lower barriers to their use. He and other leaders of the Make America Healthy Again movement have promoted peptides as a way to improve the country’s health.

On the social media platform X, before he took the helm at the Department of Health and Human Services, Kennedy the “aggressive suppression” of “peptides, stem cells, raw milk” and “anything else that advances human health and can’t be patented by Pharma.” (In fact, peptides are heavily patented.)

He has repeated the pledge since taking office. On early this year, Kennedy said he was a “big fan” of peptides and wanted to make many of them “more accessible.” On a podcast with the co-chair of the MAHA Action committee, Gary Brecka, the FDA’s role should be to assess science, “but not tell people and not tell physicians what they can and cannot prescribe.”

“If you want to take an experimental drug,” he added, “you ought to be able to do that.”

This summer, Kennedy’s health department with financial stakes in the peptide industry to a panel that advises the FDA. At an in July, the new appointees voted to ease restrictions on six experimental peptides, including the trendy compounds BPC-157, TB-500, and MOTS-c. Specifically, they advised adding these peptides to a list, called 503A, that would allow specialized pharmacies to make the drugs for human use, even though the FDA hasn’t approved them.

In an email, HHS spokesperson Emily Hilliard wrote that every committee member satisfies the FDA’s ethics requirements. “FDA — not podcasts or politics — determines which substances qualify for inclusion on the 503A Bulks List,” she wrote. The FDA has yet to issue a final decision.

The vote went against FDA scientists who on the six peptides, concluding there wasn’t enough evidence to show they improved any condition. Furthermore, the scientists highlighted a potential for liver damage, allergic reactions, or other serious consequences.

“People are saying this is about medical freedom — putting decisions back in the hands of patients,” said Reshma Ramachandran, a regulatory science researcher at Yale School of Medicine. “But what we see in practice is that incentives aren’t actually centered around patients. They’re centered around selling products.”

Scientists also warned that drugmakers would be reluctant to invest millions of dollars into clinical trials on peptides if they could be sold without FDA approval.

“The chances of clinical trials getting done now are diminished,” said Eric Topol, executive vice president of Scripps Research, a biomedical science institute in San Diego. “We will have more people who are prey to predators that will sell, sell, sell.”

A lack of data leaves consumers in the dark.

Meetze sought help on Reddit, where people post about pain, headaches, vision problems, and a lack of motivation after taking experimental peptides. Peptide enthusiasts often comment on these posts with skepticism, attributing a person’s problems to contaminated products, preexisting conditions, or misuse of the drugs. The online vitriol in the Reddit conversations can be intense, so Meetze welcomed an invitation to join a private group on the social platform Discord in which people with BPC-157 side effects tried to figure out what happened to them and how to fix it.

“There are millions of success stories with these peptides,” Meetze said, “but no one wants to believe that this wrecks some of our lives.”

Two passersby walk past a wellness clinic. It has a sign that advertises peptides alongside weight-loss injections, bioidentical hormone replacement therapy, and botox.
Experimental peptides are often sold at longevity, wellness, and “performance medicine” clinics — even though they haven’t been proved safe and effective in clinical trials. (Amy Maxmen/吃瓜不打烊)

Wolverines and Migraines

One member of the private side-effects group, a 46-year-old software engineer named Dominik E., said he got an excruciating migraine within days of taking BPC-157 with TB-4, another unapproved peptide — a combination called the “Wolverine Stack” because of its purported ability to heal wounds rapidly, like its namesake Marvel superhero.

“My left eye started throbbing really badly, and the left side of my face became numb,” he told 吃瓜不打烊, which agreed to only partially identify him and others interviewed for this article who were concerned about divulging sensitive health information.

After two months of migraines, Dominik said, the pain eased, but his face felt inflamed. “It is a total nightmare,” he said.

“I’m afraid how people will judge me,” said Lois S., a woman who works at a Michigan elementary school. She hoped BPC-157 and another unapproved peptide, retatrutide, would help with weight loss, but she stopped taking the treatment when she felt pain.

“I sought out this substance from a lab that clearly labeled it not for human use, purchased a syringe, and injected this in my kitchen,” she said. “That belies all logic about what a normal person would do.”

Peptide proponents argue that shoddy manufacturing — not the peptides — causes harm. Therefore, they say, the FDA must protect the public by allowing doctors to prescribe peptides made for human use by pharmacies that specialize in . Typically, compounding pharmacies manufacture alternatives to FDA-approved drugs so a patient can, say, get a liquid version of a drug that the original manufacturer makes only as pills.

Adding unapproved peptides to the FDA’s list of compoundable drugs would mark a departure from the list’s purpose, said Peter Lurie, a former FDA official who now directs the advocacy group Center for Science in the Public Interest. He noted that federal and state oversight for compounding pharmacies is often lax, and they’ve been .

Furthermore, he added, the move would mislead consumers into thinking they’re buying drugs backed by clinical trials. People promoting peptides often point to promising laboratory research as evidence. Rats with spinal injuries after BPC-157 injections, for example, and old mice given the experimental could run longer. On average, however, fewer than 10% of substances that show promise in animal studies prove effective in clinical trials.

“A lot of this pseudoscience stuff sounds deeply impressive — inflammation this and telomere that — but at the end of the day, none of it really matters,” Lurie said. “You’ve got to show clinical benefit in humans: Does it work?”

Peptide promoters lean on anecdotes, often without verifiable numbers. In a at the White House, the MAHA influencer Brecka said: “Twenty million people have been prescribed these things without adverse events.” His guest on the episode, Brigham Buhler — who is the co-author of The Peptide Revolution and owner of a compounding pharmacy that sells peptides and a clinic, Ways2Well, that prescribes them — told Brecka that none of its 75,000-plus patients had reported adverse events from peptides.

Buhler cited even higher numbers in the movie , a documentary featuring Kennedy and other leaders of the MAHA movement and that bears the MAHA trademark. In the segment on peptides, Buhler said: “Having treated literally hundreds of thousands of people through our compounding pharmacy, we’ve never had a major adverse event.”

Topol asks why those boasting success haven’t conducted clinical studies. “If influencers and companies really believe these peptides are helping people,” Topol said, “then they should put their profits back into rigorous research.”

Chris Woodward, a spokesperson for Brecka and his company, the Ultimate Human, said in an email that the health and wellness issues discussed on Brecka’s podcast do not constitute medical advice. “Mr. Brecka consistently advises his audience to consult a licensed physician,” Woodward wrote. Buhler did not respond to requests for comment.

Not all anecdotes are rosy. At an antiaging conference last summer in Las Vegas, two women were rushed to the hospital and intubated after being injected with experimental peptides and vitamins, according to citations that Nevada’s state pharmacy board issued against the doctor running the booth and his colleagues for prescribing and administering drugs without a state medical license.

An for adverse events contains concerning reports. Although the database can’t prove that a drug, vaccine, or medical device caused harm — the reports are brief, unverified, and voluntary — it signals issues worth exploring. A 36-year-old woman was hospitalized in December after taking the experimental peptide BPC-157 for weight control and a skin disorder, for example, and a 48-year-old man was hospitalized with a “life-threatening” condition after taking the peptide.

FDA scientists presented some of these reports at the July meeting and flagged worrisome outcomes in animal experiments, such as a revealing signs of liver toxicity in rats and dogs injected with BPC-157.

Brian Lee, a liver disease specialist at the University of Southern California, was among the panel’s minority who voted against easing restrictions. Without clinical studies, he said, afflictions that take time to develop, like liver damage and cancer, might not be spotted for years: “I think this endorsement can be potentially harmful, and I cannot in good conscience vote ‘yes.’”

The panel’s newcomers disagreed. “I do not believe the FDA made a good case on issues with safety with BPC,” said Kris Wusterhausen, founder of an antiaging company in Texas, the Resurge Clinic, which sells a BPC-157 product for $149.

“Once you’ve seen the effects of BPC,” he said, “you can’t unsee it.”

Awaiting Trial

Deepak Srivastava, president of the Gladstone Institutes in San Francisco, designed a clinical trial two decades ago to see if a peptide he studies, TB-4, could repair tissue after a heart attack. Before enrollment, people volunteering for the study would be screened for early signs of cancer because TB-4 triggers vessel growth and cell migration, which might exacerbate malignant growths. He worries about the FDA panel’s vote to ease restrictions on a derivative of TB-4, before such trials have been completed, saying, “You need to have a healthy respect for the fact that drugs can be harmful.”

Pinchas Cohen, a peptide researcher at the University of Southern California, was less cautious, saying the FDA buzz might drive investors to fund trials. He’s seeking support to bring a peptide his lab identified, MOTS-c, to market. It’s “un-ideal” for people to take unproven drugs, Cohen said, but that’s what’s happening: “The world is changing and people like me need to accept that this is the new reality and find ways to make it as safe as possible.”

In the meantime, people like Meetze resort to podcasts and online forums for advice. His symptoms faded after a year, but he still had spells of feeling “zero emotions.”

Peptide users describe this condition as anhedonia. It’s come up on .

Huberman occasionally mentions other potential peptide risks, like cancer, sprinkling them into advice on how to take them. Take a with 1.2 million views: “I do not think that BPC-157 is not without its quote-unquote ‘side effects,’” Huberman says. “If you’re going to go down this path of taking BPC-157, I would encourage you to take the minimal effective dose, to not simply do it every day, and certainly to not do it continuously, and of course to monitor your other health metrics for anything that could potentially resemble cancer or tumor growth, because obviously stimulating angiogenesis for wound repair sounds like a great thing, recovering and being able to do your workouts or play your sport, or move about more comfortably, of course, a wonderfully attractive thing to do.”

“Isn’t that what we all want? But obviously not with the trade-off of growing a tumor,” he said, before interrupting the discussion to advertise a supplement company sponsoring the show.

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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

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Doctors Should Keep an Eye on Your Mix of Medication. If They Don鈥檛, You Should. /aging/wamu-health-hub-audio-rx-checkup-deprescribing-how-pills-mix/ Mon, 05 Oct 2026 09:00:00 +0000 /?p=2291604&preview=true&preview_id=2291604 Medications can snowball as we age. Pill organizers pile up. Prescriptions that are no longer necessary can mix with other drugs to create concerning side effects. 

“Once you get to six or seven prescription medications, you get a nearly 100% chance of some sort of side effect or intolerance,” said physician , director of geriatrics at MedStar Washington Hospital Center. 

Paula Span writes “The New Old Age” column for The New York Times and 吃瓜不打烊. She joined WAMU’s Health Hub on Sept. 30 to talk about common medications 鈥� from aspirin to benzodiazepines 鈥� that some older patients are overusing.

Span shared tips for keeping loved ones safe and said it’s important for patients and caregivers to be proactive. 

“Doctors prescribe medicine based on the evidence available at the time. But science doesn’t stop,” Span said. “Your doctor might not be up on the latest research. And patients get into a routine. They may not question if they still need the drugs they’ve been taking.” 

Experts and pharmacists say: Check with your doctor to make sure the meds you’re taking are still right for you.

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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

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Journalists Evaluate Rural Voter Sentiment, MAHA Movement, and Gene-Editing Finding /on-air/on-air-october-3-2026-kff-ap-rural-voter-poll-glp1-rfk-maha-summit-claude/ Sat, 03 Oct 2026 09:00:00 +0000 /?p=2267875&preview=true&preview_id=2267875

吃瓜不打烊 chief rural correspondent Sarah Jane Tribble discussed the findings of a KFF-Associated Press poll about rural support for the Make America Healthy Again movement on NPR’s Morning Edition on Sept. 30.


Céline Gounder, 吃瓜不打烊’ editor-at-large for public health, discussed a new GLP-1 weight loss drug on CBS News’ CBS Mornings and health secretary Robert F. Kennedy Jr.’s comments at a MAHA summit this week on CBS News 24/7’s Mornings, both on Sept. 30.

Gounder also discussed how Anthropic’s Claude agents might help develop new gene-editing technology on CBS News 24/7’s The Daily Report on Sept. 24.

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吃瓜不打烊 senior correspondent Renuka Rayasam discussed聽the Rural Health Transformation Program on WUGA’s The Georgia Health Report on Sept. 25.

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吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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

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Patient Dies by Suicide After 鈥業nsurance Issue鈥� Delayed Medicine for Lung Disease Flare-Ups /health-industry/insurance-issue-delayed-copd-prescription-breathing-problems-suicide-texas/ Fri, 02 Oct 2026 09:00:00 +0000 /?p=2290590

If you or someone you know may be experiencing a mental health crisis, contact the 988 Suicide & Crisis Lifeline by dialing or texting “988.”

KYLE, Texas 鈥� Kenney Blewett was diagnosed with lung disease more than a decade ago but started experiencing flare-ups this year that made him feel like he couldn’t breathe.

Blewett described those flare-ups as “the scariest thing in the world,” said his wife, Cindy, adding that while the episodes typically lasted no more than a few minutes, they had become more frequent.

On top of that, simple tasks, like taking out the trash, left Blewett winded. He rarely left the house and had recently lost 45 pounds. “That sounds like cancer,” Cindy remembered one of his doctors said. It was clear, she said, that her husband’s poor health, tied to decades of smoking, was getting worse.

That’s why, on June 2, Blewett’s pulmonologist wrote him a prescription for a new medication to improve the terrifying breathing issues caused by chronic obstructive pulmonary disease, or COPD. But the prescription wasn’t immediately filled. Two days after that doctor appointment, Blewett received an email from Walgreens explaining that, “due to an insurance issue that we’re working to resolve,” the medication was delayed.

“He was hopeful that it would work,” Cindy said of the drug, two months after her husband’s death. “I wish we had the chance to find out.”

Insurance delays and denials have become an infamous feature of the American healthcare system, with nearly 7 in 10 adults calling them “a major problem,” in a January .

In June 2025, six months after UnitedHealthcare’s CEO was shot in New York, the Trump administration announced a highly publicized industry pledge, signed by dozens of major health insurers, to remove some of the barriers that block or delay patients from accessing doctor-recommended care. And yet that pledge was voluntary, and it carries no penalties if companies fail to comply. Indeed, a report published by 吃瓜不打烊 in July found that some insurers that signed the pledge would not implement all the promised initiatives as originally outlined.

In recent years, lawmakers in most states, including Texas, have attempted to address delays and denials by in the absence of substantial federal reform. But most health insurance plans, including traditional Medicare policies and employer-sponsored offerings, which together cover more than half of all Americans, typically aren’t under state jurisdiction.

Even some medical office staff and pharmacy employees find the patchwork of state and federal insurance rules and regulations confusing, a problem that is poised to become more complicated as artificial intelligence plays a larger role in approving and processing claims.

“It’s just gotten completely out of hand,” said Matt Toresco, CEO of Arch艒, a patient advocacy and consulting company. He argued that patients need more assistance facing insurance hurdles.

The Blewetts’ story illustrates how navigating these complexities remains a herculean task for patients and their caregivers.

Cindy has sought answers from Medicare; Kenney’s private Part D drug plan; his pulmonologist’s office; and Walgreens. She still has questions about who was responsible for the medication delay and how the holdup could have been prevented.

If the COPD flare-up Blewett experienced on the afternoon of Sunday, June 7, could have been avoided, she wondered, would he still have chosen to die by suicide that night?

A photo of a man standing in the woods seen on a laptop.
Kenney Blewett, who was diagnosed with lung disease more than a decade ago, died by suicide in June. The Blewetts celebrated their 60th wedding anniversary earlier this year. (Callie Richmond for 吃瓜不打烊)

鈥楥omplex and Convoluted’

During that first week of June, Cindy said her husband repeatedly asked if his prescription 鈥� a liquid medication meant to be inhaled through the nebulizer machine Kenney owned 鈥� was ready to be picked up from Walgreens.

Cindy said she wasn’t initially surprised or worried by the delay. Since its acquisition by a private equity firm last year, Walgreens has cut thousands of jobs across the country, according to the . Cindy said in August that their Walgreens pharmacy in Kyle seemed to her to have been understaffed for months, and that prescriptions were being filled more slowly.

When Cindy called the pharmacy a few days after Kenney’s appointment to find out more about the insurance delay, she said, a Walgreens employee told her the prescription required prior authorization. Also called preapproval or precertification, prior authorization is a practice widely used by health insurers that requires medical providers to seek permission before their patients may receive covered treatment.

But Cindy didn’t know which of Kenney’s insurers required prior authorization for this medication.

For years, she had helped manage multiple policies on behalf of her husband. Kenney was insured by Medicare parts A and B, the federal health insurance program for people 65 and older or with disabilities. But he also had a private Part D plan to cover drug costs through Wellcare Value Script, as well as a Medicare supplement plan through Blue Cross and Blue Shield of Texas 鈥� also called a “Medigap” plan 鈥� that paid for other out-of-pocket costs.

Initially, Cindy assumed that Kenney’s Part D plan had invoked prior authorization for his new medication. But because it was a liquid that is inhaled through a nebulizer machine, this drug was one of relatively few covered by Medicare Part B’s , not Part D.

The federal government had no record showing that this prescription had been billed to Kenney’s Part B policy, the Medicare agency told Cindy over the phone, she said.

Sarah Tanner and Myriea Amaya, spokespeople for Centene, Wellcare Value Script’s parent company, would not answer questions for this article.

After Kenney’s death, when Blewett sought clarification at the Walgreens pharmacy, she said the employee “kept saying different things.” She recalled his explaining that the prescription was submitted to Medicare Part B but without a necessary diagnostic code that the doctor should have included.

Carmen Lopez, a spokesperson for Walgreens, told 吃瓜不打烊 in late September that the company “cannot comment on matters involving specific individuals.”

Subsequently, Cindy said, a district pharmacy supervisor for Walgreens reached out by phone, and told her the pharmacy tried to process the prescription through Part B on June 2, the same day as the pulmonologist appointment, but that the prescription was missing a diagnostic code from the physician. The supervisor said Walgreens sent a request for that code to the pulmonologist’s office later that day, Cindy recalled.

Kenney’s pulmonologist 鈥� Rajesh Shetty of LungDocs 鈥� did not respond to phone or email messages from 吃瓜不打烊. But Cindy said an employee at the practice told her they did not see a fax from Walgreens asking for a diagnostic code for the prescription.

Meanwhile, it couldn’t have been an issue with Kenney’s Medigap plan, since prior authorization.

“Short of getting attorneys involved,” Cindy said, “I’m not sure how to find out what really happened.”

Cindy Blewett stands on her porch in front of her home. Foliage and plants from her garden on seen to the left.
Cindy Blewett tried to figure out which of her husband’s insurers required prior authorization for his medication. (Callie Richmond for 吃瓜不打烊)

More Red Tape Ahead

Confusion surrounding these Part B and Part D distinctions is common, said Mike Hess, senior director of advocacy and regulatory affairs at the nonprofit COPD Foundation. “Medicare has gotten to be so complex and convoluted over the years,” he said, that even medical office staff and pharmacy employees often misunderstand the nuances.

And with the introduction of AI to the preapproval process, navigating insurance hurdles will likely get more complex for Medicare beneficiaries, doctors say.

Historically, traditional Medicare, unlike Medicare Advantage, used prior authorization sparingly. But in January, Medicare launched a pilot program in six states 鈥� Arizona, New Jersey, Ohio, Oklahoma, Texas, and Washington 鈥� testing the use of AI to preapprove some healthcare services.

It is intended to “root out waste in Original Medicare,” CMS Administrator Mehmet Oz has said, but physicians and patients say the program is creating more red tape for Medicare beneficiaries and leading to inappropriate denials. The pilot program does not currently impose prior authorization requirements on COPD medications, but industry experts expect the scope of the initiative will grow to include more services and states.

On the night of June 7, hours after her husband’s last COPD flare-up, Cindy Blewett was sitting on their back porch when she heard a loud noise. She assumed a picture had fallen off the wall in the living room. In fact, it was a gunshot. She discovered Kenney’s body in their bedroom.

“I can’t tell you how horrible it was,” Cindy said.

She said her husband had struggled with his mental health for a long time and had attempted suicide once before, years ago. His deteriorating health only made things worse, she said.

Kenney confirmed that much in a note he left. He told Cindy that she was a wonderful wife, mother, and grandmother but that his health was too poor to continue living.

A photo of a dark blue urn on a black table. A glass goblet is seen behind the urn.
Cindy Blewett keeps an urn of her husband’s ashes. (Callie Richmond for 吃瓜不打烊)

A second COPD medication, which his pulmonologist ordered directly from the drug manufacturer during the June 2 appointment, arrived several weeks after Kenney’s suicide, she said.

“Perhaps, just perhaps,” Cindy said, “if he had received both medications in a timely manner, he would be here today, and we would have had many more years together.”

Do you have an experience with prior authorization you’d like to share? to tell 吃瓜不打烊 your story.

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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

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Republicans and Democrats Find a Unifying Target: Pharmacy Benefit Managers /health-industry/pharmacy-benefit-managers-pbms-drug-costs-common-ground-tennessee/ Mon, 28 Sep 2026 09:00:00 +0000 /?p=2281035 Amye Joseph says America’s political polarization has made it an “interesting time” in her Tennessee household. She and her husband, Charlie, have been married 35 years. She’s a Republican. He’s a Democrat.

But their shared disenchantment with profit-driven healthcare has provided a unifying target: pharmacy benefit managers, known as PBMs. The Josephs’ frustration is focused on CVS Health. The conglomerate, which reported $400 billion in revenue last year, includes a major health insurer (Aetna), one of the country’s dominant PBMs (CVS Caremark), and America’s largest retail pharmacy chain.

“We hate CVS. I’m going to be straight-up,” Amye Joseph said.

She laments the lack of face-to-face interaction with pharmacists, prices that seem to rise without explanation, and pressure from the couple’s CVS Caremark drug plan to use CVS stores instead of their local pharmacy. “They’re not even a middleman,” she said. “They’re a money grab for CVS.”

PBMs were conceived as a way to manage prescriptions and hold down costs. But these middlemen have become bipartisan punching bags, accused of sucking up profits at the expense of employers, governments, and patients.

And while healthcare debates still divide Democrats and Republicans in Washington, D.C., taking on PBMs has become a unifying cause in an era of widespread frustration over rising healthcare costs.

In recent years, every state has imposed restrictions on PBMs. The Josephs’ home state of Tennessee, where the GOP has a lock on state government, is among a growing number looking to outlaw companies that own PBMs from also owning brick-and-mortar pharmacies, as CVS does.

That’s aligned conservative, business-friendly Republicans with Democrats traditionally more open to government regulation.

This legislative push reflects a feeling even in the GOP that the market for prescription drugs is being gamed, said Antonio Ciaccia, CEO of , a nonprofit think tank that tracks drug pricing.

“Republicans are looking at this issue, saying, We know what competition is supposed to do, and it isn’t happening,” said Ciaccia, a critic of the PBM industry. “This is not a free market.”

Charlie Joseph, a retired fire captain who now works as a custodian, was miffed when he realized he could save money on his blood pressure medication if he paid cash at his local pharmacy rather than using his CVS Caremark drug plan. He now buys a 90-day supply for the same price he would have paid for a 30-day supply through the CVS plan.

Charlie and Amye Joseph stand on their porch.
The Josephs don’t like dealing with pharmacy benefit managers. PBMs, designed as intermediaries between drugmakers and insurance companies to negotiate drug prices, have become targets of bipartisan anger over health costs. (Earl Neikirk for 吃瓜不打烊)

“Right now, it’s more of an inconvenience than anything else as far as it goes, but there’s no consistency,” he said. “The whole healthcare thing is just frustrating, on a good day.”

CVS spokesperson Phil Blando said the price of individual drugs can vary.

“Looking at the price of a single prescription does not reflect the value of a comprehensive pharmacy benefit,” he said in a statement. “Our focus remains delivering the lowest possible total cost and the greatest overall value for members and plan sponsors.”

Unified Opposition

PBM officials say their industry has been unfairly maligned. “PBMs are the only part of the prescription drug supply chain working to lower drug costs, which makes PBMs the target of powerful groups, Big Pharma and pharmacists,” said Greg Lopes, a spokesperson for the Pharmaceutical Care Management Association, which represents PBMs across the nation.

“Drug manufacturers attempt to shift blame for high drug costs to PBMs in order to retain their profit margins and weaken PBMs’ ability to lower costs,” he said.

Drugmakers have worked for years to cast PBMs as unnecessary go-betweens, said Barak Richman, a lawyer and economist who studies healthcare competition at George Washington University. He called the fight between the two industries a corporate “cage match.”

“We have wildly passionate partisan divides on a lot of healthcare,” he said. “But there’s a lot of healthcare policy that I don’t think is obviously partisan.”

PBMs haven’t won over many Democrats or Republicans. Attorneys general from nearly 40 states and U.S. territories last year to congressional leaders arguing that “horizontal consolidation and vertical integration have transformed PBMs from useful administrative service providers into market-dominating behemoths.”

In state legislatures like Tennessee’s, shared ownership of PBMs and pharmacies has drawn particular fire. Independent pharmacies have little choice but to contract with major PBMs while also competing with the conglomerate-owned pharmacies. Many lawmakers have said they want to protect small businesses.

“If a corporation argues that its pharmacy cannot survive unless it is owned by the same entity that sets the reimbursement rate, then we’re not talking about a free market. We’re talking about control,” Tennessee state Sen. Bobby Harshbarger said in a February legislative hearing.

Harshbarger, a Republican who led the legislative push, is a pharmacist in a small city in northeastern Tennessee.

His mother, U.S. Rep. Diana Harshbarger (R-Tenn.), is also a pharmacist and has sponsored a similar PBM ownership ban . The Senate version has brought together some unlikely bedfellows, such as Sens. Elizabeth Warren (D-Mass.) and Josh Hawley (R-Mo.).

State Lawmakers vs. CVS

CVS officials argued the Tennessee legislation was misguided. “Any proposed reform should be evaluated based on whether it improves access to care, simplifies the patient experience, and enhances affordability,” Blando said.

It’s unclear whether the PBM ownership ban will do that in Tennessee. by the state legislature’s researchers concluded that the bill could drive up healthcare costs in the short term.

To fight the bill, CVS launched a $7 million , claiming it would have to close all its 134 pharmacies in the state, similar to its threat in neighboring Arkansas when state lawmakers there passed in 2025.

CVS also sent to Tennessee customers, asking them to contact their lawmakers to keep pharmacies open. from CVS helped kill a PBM ownership ban in Louisiana last year.

Sponsors of the legislation said closure wasn’t the only option: CVS could also divest either its stores or its PBM.

Tennessee lawmakers moved forward. State Sen. Rusty Crowe, a Republican from northeastern Tennessee, where the Josephs live, told his colleagues before the vote that they should consider the fierce resistance a sign that they were onto something.

“I learned when I was in the Vietnam War, when you start taking on flak, you know you’re over the damn target,” he said.

As with most votes in Tennessee’s legislature, Republicans didn’t need support from Democrats. But they got it anyway.

State Rep. Antonio Parkinson, a Democrat from Memphis, said he felt like he was voting in favor of lower drug prices and supporting “ma and pa” pharmacies. “If there’s a benefit to my people, I’m supporting it.”

CVS has not divested or closed its pharmacies in states that have passed ownership bans 鈥� the laws have yet to take effect. The Arkansas ban is being held up in court after CVS challenged the constitutionality of the law. CVS also sued in Tennessee, though the ownership ban doesn’t take effect until 2028.

This article is from a partnership that includes , , and 吃瓜不打烊.

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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

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Insurance Coverage Lags as Cancer Science, Treatment Move Forward /health-industry/rare-brain-cancer-tumors-genetics-drug-coverage-astrazeneca-lynparza-texas/ Tue, 22 Sep 2026 09:00:00 +0000 /?p=2285126 A photo of Mason Henderson and his mother, Tabitha Lowe, outside a shop in New York.
Mason Henderson with his mother, Tabitha Lowe, in November during a visit to New York, where Henderson was participating in a clinical trial to treat his brain cancer. Henderson died in May after a two-year battle with the disease. (Jerry Lowe)

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.”

A photo of Tabitha Lowe and her son Mason Henderson smiling by a lake.
Tabitha Lowe and her son Mason Henderson. Lowe spent six weeks trying to get an $8,700-a-month drug for her son that the family’s pharmacy benefit manager wouldn’t cover. (Tabitha Lowe)

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.

A photo of Tabitha Lowe smiling with her son Mason Henderson.
Patients like Henderson often struggle to get medications that are prescribed off-label based on recent scientific findings. (Tabitha Lowe)

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.”

A screenshot of a Facebook post by Tabitha Low tags AstraZeneca, @cancerresearch, @rarediseases, and the National Comprehensive Cancer Network. The text of the post reads, "PLEASE SHARE!" followed by images of Mason Henderson describing his condition.
Tabitha Lowe took to Facebook to try to get her son Mason Henderson access to the brain cancer treatment his doctors sought for him. (Tabitha Lowe)

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.”

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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

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