Cancer Archives - Â鶹ŮÓÅ Health News /tag/cancer/ Â鶹ŮÓÅ Health News produces in-depth journalism on health issues and is a core operating program of Â鶹ŮÓÅ. Mon, 08 Jun 2026 09:12:22 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.5 /wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=32 Cancer Archives - Â鶹ŮÓÅ Health News /tag/cancer/ 32 32 161476233 Gounder Fills In Details Behind Ebola, GLP-1, and Trump Headlines /on-air/on-air-june-6-2026-ebola-glp1s-trump-medical-exam-creatine-upf-food-dementia/ Sat, 06 Jun 2026 09:00:00 +0000 /?p=2246863&preview=true&preview_id=2246863

Céline Gounder, Â鶹ŮÓÅ Health News’ editor-at-large for public health, discussed a recent study that suggests ultraprocessed foods are linked to increased dementia risk on CBS News 24/7’s The Daily Report on June 3. Gounder also discussed the Ebola outbreak in central Africa and the impact of U.S. health funding cuts on CBS News’ CBS Mornings on June 3.

On June 2, Gounder joined CBS News’ CBS Mornings to discuss a study that found women taking GLP-1 drugs had a lower rate of breast cancer diagnoses. She also discussed President Donald Trump’s new medical report and creatine supplements on CBS News 24/7’s Mornings and CBS News’ CBS Mornings, respectively, on June 1.

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

This <a target="_blank" href="/on-air/on-air-june-6-2026-ebola-glp1s-trump-medical-exam-creatine-upf-food-dementia/">article</a&gt; first appeared on <a target="_blank" href="">Â鶹ŮÓÅ Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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Gounder Gives Lowdown on Ebola, Peptides, and Colorectal Screenings /on-air/on-air-may-30-2026-celine-gounder-peptides-colorectal-cancer-ebola/ Sat, 30 May 2026 09:00:00 +0000 /?p=2244153&preview=true&preview_id=2244153

Céline Gounder, Â鶹ŮÓÅ Health News’ editor-at-large for public health, discussed recent warnings about research-grade peptides and new colorectal cancer screening guidelines on CBS News’ CBS Mornings on May 27. She also discussed the Ebola outbreak centered on the Democratic Republic of Congo and whether it’s expected to spread on May 26.

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

This <a target="_blank" href="/on-air/on-air-may-30-2026-celine-gounder-peptides-colorectal-cancer-ebola/">article</a&gt; first appeared on <a target="_blank" href="">Â鶹ŮÓÅ Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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FDA Blocked Melanoma Drug as Confusion Reigned Under Makary /health-industry/fda-blocked-melanoma-drug-marty-makary-confusion-reigned/ Fri, 15 May 2026 09:00:00 +0000 /?p=2238195 The FDA’s to withhold approval of a new skin cancer treatment fell like a hammer on doctors who treat melanoma and patients who saw that the drug had prolonged the lives of a third of the participants in a clinical trial.

“It was devastating news,” said Trisha Wise-Draper, a dermatologist at the University of Cincinnati who had patients enrolled in the trial.

“This is life or death for maybe 2,000 patients,” added Eric Whitman, medical director of the Atlantic Health System’s oncology service. A assailed the ruling, noting that it “will have a chilling effect on drug development.”

Despite the benefit to some patients, oncologists and pharmaceutical industry analysts say there were legitimate concerns about the treatment, called RP1, that may have led the FDA to reject it in any event. The company, they noted, had ignored repeated FDA suggestions that it change the design of the trial used to seek approval for the medication.

The FDA’s decision would have raised few eyebrows before the current administration took power. But Marty Makary, who took charge as commissioner 13 months ago, altered the agency’s culture and damaged the trust it had built over decades while regulating 20% of U.S. consumer spending, said Steven Grossman, a regulatory consultant and former Health and Human Services official.

“People have to speculate about the standards and processes by which the agency makes decisions,” he said. “And that uncertainty is bad for everybody — patients and sponsors and investors.”

Under Makary — who resigned this week — senior officials have or some at the behest of President Donald Trump or HHS Secretary Robert F. Kennedy Jr., ignoring the advice of agency professionals. In defending his actions, Makary often eschewed the agency’s traditionally measured language about its decisions.

In response to criticism for rejecting the melanoma treatment, for example, Makary accused its manufacturer, Replimune, of “corruption,” saying it was “engaging in corporate spin” to make the FDA look bad.

“I don’t work for Replimune. I work for the American people,” Makary said in a May 5 interview on CNBC. Kennedy backed him up during a congressional budget hearing in which Kennedy mistakenly claimed that patients in Replimune’s clinical trial had also received chemotherapy.

Makary did not respond to requests for comment.

“All the norms have been thrown out the window, so we don’t know what underlines an agency decision,” said , a former FDA staffer and Senate aide to Sen. Edward Kennedy who’s now a pharmaceutical industry consultant in Boston. “Even when there are legitimate scientific and regulatory reasons why a drug will not be approved, we’re left guessing whether it’s legitimate grounds or just a political play.”

A Doomed Cancer Drug

Melanoma is the fifth most commonly diagnosed cancer in the United States, with about 112,000 new cases each year. The American Cancer Society projects that from melanoma this year in the U.S. If Replimune’s treatment, RP1, worked as well as it did in the clinical trial, Whitman said, as many as 2,500 of those patients could be saved.

RP1 is a genetically engineered virus designed to destroy tumor cells and alert the immune system to swing into action against them. Replimune sought accelerated approval — a sort of shortcut that allows a product to enter the market while a larger confirmatory trial takes place — by presenting data that showed a third of 140 people in the trial had their tumors shrink or disappear. But the agency had warned Replimune in July that it risked denial unless it changed its development plans. In particular, the FDA noted that the trial had no control arm to compare RP1 to an approved melanoma treatment. Instead, all patients were given RP1 along with Opdivo, a type of immunotherapy.

Replimune’s scientists don’t entirely understand how the drug works, but research indicates that, in addition to destroying cancer cells, it releases chemicals that revive Opdivo’s capacity to stimulate the immune system. The company argued it would be unethical to give Opdivo alone as a control arm, because all the patients entered in the trial had already stopped getting better while taking only Opdivo or other drugs in its class.

“Having a control arm would have been unethical,” Wise-Draper said. Some of her patients responded extremely well to RP1 and no longer have evidence of melanoma, she said.

Replimune currently has a larger trial that includes a control arm, but “the bigger question is whether the company will survive,” Whitman said. The FDA-accelerated approval would have persuaded investors to provide enough cash to finish the larger trial, he said.

Replimune did not respond to repeated requests for comment. But it is firing more than half its staff and closing some operations in the wake of the FDA ruling.

RP1 wouldn’t have been the first melanoma drug approved based on a single-arm trial. Keytruda, the best-selling Merck cancer drug, was approved to treat melanoma some 12 years ago based on such a trial design. But in its denial statement, the FDA said it wasn’t convinced that the positive effects of the combination regimen were all due to RP1 and not partly to Opdivo.

Replimune arguably could have found an ethical way to set up a control arm for its treatment, Kim said. On the other hand, the FDA could have “given them a provisional yes” with accelerated approval, he said. The whole point of the three-decade-old accelerated approval program is to “take a gamble,” Kim said. The agency’s statement, stressing the company’s methodology over the result, “is a recalibration of how confident sponsors can be with similar studies,” he said.

Vinay Prasad’s Final Days at FDA

Much of the criticism of the FDA under Trump has focused on Vinay Prasad, who was fired then rehired last summer and held various leadership roles at the agency. Prasad, an oncologist known for critiquing the statistical bases of studies, repeatedly intervened in approval processes for drugs and vaccines normally decided by lower-ranking FDA professionals.

Prasad, who did not respond to requests for comment, resigned for good May 1, three weeks after the Replimune decision. “There’s this lingering question of whether this was Vinay’s last stand, or an objective decision made by careful scientists,” Kim said.

Makary ran afoul of Trump administration officials over various decisions, the last being his reluctance to approve flavored vapes for smoking cessation. Trump’s anti-abortion supporters wanted him ousted for allowing a generic form of mifepristone on the market, and for failing to speed up studies they hoped would lead to the abortion drug’s withdrawal from the market.

But in the industries regulated by the FDA, ranging from gene therapy to vaccines and cancer, officials are frustrated by the agency’s uncertain direction. In past administrations, the agency generally swung on a narrow arc between loosening and tightening requirements for drug approvals. Under Makary, “it’s been swinging in every conceivable direction,” Grossman said.

“It’s very inconsistent; it’s all over the place,” Whitman said. “The inconsistency is part of the concern.”

During his tenure, Makary made a series of categorical statements that either claim credit for progress made during earlier administrations or exaggerate the agency’s ability to move forward on goals.

For example, he set a goal of , which is considered impractical at the moment, Kim said, and moved to artificial intelligence at the FDA — prematurely, critics say. Makary and Prasad also promised to reduce the from two to one. FDA statutes require two well-controlled clinical trials for drug approvals, but exceptions to that rule are already frequent.

“The FDA is sending signals that it wants to even further reduce the evidence needed to support drug approval,” said Aaron Kesselheim, a Harvard Medical School professor and an expert on the drug industry. “Of course, if we’re talking about vaccines, the total opposite is the case. FDA has been taking real steps to make it harder to get vaccines approved.”

The FDA fired about 4,000 staffers at the start of the Trump administration. Makary promised to hire thousands back, but considering the upheavals at HHS and the FDA, these positions may be hard to fill. “What magic trick will get that done?” Grossman asked.

“The unfortunate thing is that there has been so much chaos at FDA that this Replimune decision, which may have needed to happen, has gotten mired in the controversy,” said Evan Seigerman, leader of healthcare research at BMO Capital Markets.

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

This <a target="_blank" href="/health-industry/fda-blocked-melanoma-drug-marty-makary-confusion-reigned/">article</a&gt; first appeared on <a target="_blank" href="">Â鶹ŮÓÅ Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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Journalists Share Latest on Baby Formula Safety, Estrogen Patches, and Postcancer Costs /on-air/on-air-may-2-2026-baby-formula-safety-test-menopause-postcancer-care-costs/ Sat, 02 May 2026 09:00:00 +0000 /?p=2233479&preview=true&preview_id=2233479

Céline Gounder, Â鶹ŮÓÅ Health News’ editor-at-large for public health, discussed the results of the FDA’s largest baby formula safety test on CBS News 24/7’s The Daily Report on April 29. She also discussed how women seeking treatment for menopause symptoms are facing a shortage of estrogen patches on CBS News’ CBS Mornings on April 27.


Â鶹ŮÓÅ Health News senior correspondent Renuka Rayasam discussed the rising cost of postcancer care on WUGA’s The Georgia Health Report on April 24.


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

This <a target="_blank" href="/on-air/on-air-may-2-2026-baby-formula-safety-test-menopause-postcancer-care-costs/">article</a&gt; first appeared on <a target="_blank" href="">Â鶹ŮÓÅ Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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A ‘Barbaric’ Problem in American Hospitals Is Only Getting Bigger /health-industry/emergency-room-ed-boarding-hospital-beds-long-waits-crisis/ Fri, 24 Apr 2026 09:00:00 +0000 /?p=2230362 In the last months, weeks, and days of his life, “I will not go to the emergency room” became my husband’s mantra. Andrej had esophageal cancer that had spread throughout his body (but not to his ever-willful brain), and, having trained as a doctor, I had jury-rigged a hospital at home, aided by specialists who got me pills to boost blood pressure; to dampen the effects of liver failure; to stem his cough; to help him swallow, wake up, fall asleep. 

“I will not go to the emergency room” — emphasis on not — were his first words after passing out, having a seizure, or regurgitating the protein smoothies I made to pass his narrowed esophagus. He said it again and again, even as fluid built up in his lungs, rendering him short of breath and prone to agonizing coughing spells. He had been a big, athletic guy, but now, in the ugly process of dying, he was looking gaunt. Ours was a precarious existence, but I understood his adamant rejection of the emergency department. Most prior visits had morphed into extended trips into a terrifying medical underworld — to a purgatory known as emergency department boarding.

I managed to keep Andrej at home while we planned for hospice, until one dreadful night at 2 a.m., when I ran out of hacks. We got into an ambulance and together headed to the hospital.

* * *

We had already learned the hard way that if you need admission to the hospital, you can remain in the emergency department — in the hallway or a curtained bay on a hard stretcher or in a makeshift holding area — for more than 24 hours, even for days, while waiting for a real hospital bed. In this limbo state, you’re technically admitted to the hospital, but still located in the physical domain of the ER. And the rules governing acceptable care and safety measures become much less clear.

In the summer of 2024, still being treated to keep his cancer at bay, Andrej had suddenly become somewhat delirious, requiring hospital admission to rule out the possibility of infection or, worse, of the cancer having spread to his brain. After we went to an emergency department near our home, in New York City, he lay trapped on a hard stretcher, with its rails up, for more than 36 hours, amid the alarms and calls for the code team, without any clues of whether it was day or night, and with access only to the few toilets shared by the dozens of patients and visitors in the emergency room. None of this helped his mental state. By the end of Day 2, he knew me — kind of — but had become convinced that the doctors were “the enemy” and that I was their paid accomplice.

After I pressed to move him to a bed “upstairs” — I meant to an inpatient ward — he was transported to a bed five floors higher. I realized too late that this was an “ED overflow area,” according to the paper sign attached to the entrance’s swinging door. A plaque in the hall identified it as a former labor and delivery floor. It had been kitted out with some of the trappings of an actual ward, such as real beds and bathrooms, but not the most important one: adequate personnel.

The space was by turns eerily quiet and wildly cacophonous. Although patients there were undergoing intimate, embarrassing procedures, rooms were gender-neutral. That first night, Andrej’s roommates were a man in a coma and an elderly French woman in a diaper and boots (no pants), who marched around her bed singing like a chanteuse. In the morning, I pestered a harried nurse and got Andrej moved to a quieter room with three beds, where two people died in three days.

The overworked staff did the best they could, but that was far from good care. My husband — who needed protein and calories but could consume only soft foods — was served chicken cutlets. When I noted to one nurse that Andrej’s soiled sheets hadn’t been changed for several days, she directed me to a linen cart so I could change them myself.

* * *

That first time, one of several extended ER stays Andrej made as a boarder, I thought perhaps we had just hit a busy time at a busy hospital. When I worked as an emergency medicine doctor a few decades ago, the ED was mostly empty at the beginning of my 7 a.m. shift. A few patients might be lingering from the day before: alcoholics who would sober up and leave, patients with a severe burn or a bad case of pneumonia who were waiting for a bed in intensive care.

In the decades since, EDs have doubled or even tripled in size. Even so, patients are piling up. When I started asking around, I quickly discovered ED boarding has become commonplace in the past five or so years and is getting worse, more or less omnipresent in hospitals. “Everyone knows about this problem, and no one cares enough to do anything about it,” Adrian Haimovich, an ED doctor at Boston’s Beth Israel Deaconess Medical Center who studies ED boarding, told me. “It’s barbaric.”

Measuring the problem has been challenging because data on ED boarding time is limited. Only this past November did the Centers for Medicare & Medicaid Services finalize a rule that would require hospitals to collect data on ED boarding times. Using what other data he could find, Haimovich has shown that boarding for more than 24 hours has increased dramatically for people 65 and older since the pandemic.

Once they enter ED boarding, patients exist in a gray zone. There has been a national push to establish “safe staffing” in EDs. Even with that, if an ED boarder has a medical complaint that needs quick attention, it’s easy for them to fall through the cracks, Haimovich said: In some hospitals, an admitting team of doctors from upstairs is responsible for the boarders stuck in the ED (but not the associated floor nurses); in others, overstretched ED medical staff must take full responsibility to care for boarders until a bed opens — and that in addition to seeing new patients. Some EDs now routinely hold more boarders — many of them quite ill — than patients being actively evaluated.

Doctors and nurses have complained bitterly about the situation, which forces them to provide inadequate care. Gabe Kelen, the director of emergency medicine at Johns Hopkins University, told me it’s creating a for emergency department staff. But doctors and department heads such as Kelen are not in control of admissions. Generally, a hospital’s administration parcels out inpatient beds, and emergency department boarding is in many ways a result of today’s business models and pressures.

* * *

When I worked as a doctor, if an ED was overwhelmed beyond capacity, the attending (that was me) typically called in to ambulance dispatch to request “diversion” — ambulances should take patients to another hospital. If a hospital got too full, the admitting office canceled elective admissions. Today, hospitals run like airlines and intentionally overbook, Kelen said. They also have fewer beds than they did a few years ago — in part because nurse (and executive) salaries have risen since the pandemic. An empty, staffed bed is a money loser, so the institution has an incentive to keep beds full and make new patients wait.

“The problem isn’t inefficiency — it’s the way health care finance is structured,” Kelen said. “Hospitals typically run on thin margins. Elective admissions are prioritized because they tend to be for lucrative procedures like heart catheterizations and joint replacements.”

Admitting patients through the emergency room has business advantages, too, even if it means they wait for a bed. The evaluation generates charges that typically run many thousands of dollars; once admitted, my husband was still billed the inpatient rate even for a stretcher in the hall. Old, sick, and dying patients are more likely to linger there in part because, after they’re in a real bed, they may take up that spot for days or weeks at a time while waiting for a bed in rehab or hospice, requiring nursing time but not the types of interventions that generate revenue.

Hospitals have tried band-aid fixes, such as bed-tracking software and discharge lounges where patients can wait for paperwork or transport home. Many do hire more doctors and nurses and orderlies in the ER to confront the overflow. But “long ED wait times and boarding have root causes that extend far beyond EDs and hospitals themselves,” Chris DeRienzo, the chief physician executive at the American Hospital Association, told me in an email. He listed the high cost of opening beds and the shortage of rehabilitation facilities, and emphasized the precarious financial situation of many hospitals.

But while Andrej waited in the overflow area, we were not thinking of any larger picture: He was sick, desperate, and still waiting for care. He lingered in boarding for four days before he got a bed. Each time he had to return to the ED, each time he faced a painful wait, he hardened his resolve to never go back.

* * *

Thunk. Crash. “Elisabeth, help!” Those were the sounds that woke me at 2 a.m.

I had fallen asleep on our bed, next to Andrej, his head raised with a foam wedge to ease his breathing and make sure food would not come up. Before I dozed off, I listened to his breathing — 30 times a minute, two times faster than normal — a sign he was struggling to get sufficient oxygen. And that racking cough. This was not good.

Now his bruised body was twisted, lying on the floor with his head against the bed frame. He’d attempted to use his walker to go to the bathroom. He was complaining of chest pain, coughing and short of breath. But he managed to get out those words: “I will not go to the ER.”

I knelt by his side in tears, telling him that I loved him but that I could not do anything more right now at home. Carlos, our super, helped me get him into bed and called EMS. I promised Andrej (against hope) that, given his condition, he would surely be quickly assigned to a real room and bed.

What happened next was a blur. I have a vague memory of paramedics arriving, putting him on the stretcher, sliding him into the ambulance, giving him oxygen. I mechanically grabbed his “do not resuscitate” form from under the refrigerator magnet and buckled myself in beside him.

Then he was in the ED, which was thrumming with activity, under the fluorescent lights, with oxygen in his nose, wearing a hospital gown, and looking gray and sick. The staff asked what was, for them, the operative question about a guy with widespread cancer: “Does he have a DNR?” Andrej asked me what was, for him, the operative question: “Did you bring my shoes?” He already wanted to leave.

An X-ray showed possible pneumonia, more tumors, and a buildup of fluid in his lungs. A medical team that covers oncology patients wrote an admitting note — he was now a boarder, again — and then retreated upstairs. They started antibiotics and gave him something to help him sleep amid the alarms and shouting. He didn’t.

When I came back the next morning — and two mornings after that — I was alarmed to see him still there on a hard stretcher, his feet dangling off the end, exhausted and in pain. “When will he be admitted to a bed?” I implored. If some of the stuff in his lungs was infectious, maybe he could be treated and get home.

Likely soon and I hear your frustration — I came to detest those two phrases.

Neighboring patients came and went 24 hours a day. Some were pleasant; some were screaming in pain or just screaming mad. Pulmonary doctors came and, in this semipublic space, used a large needle to remove three liters of fluid from Andrej’s right lung cavity.

* * *

Near the end of the Biden administration, in response to a bipartisan congressional request, the Department of Health and Human Services convened a meeting on emergency department boarding. Its report, from HHS’ Agency for Healthcare Research and Quality, came out the same month that the Trump administration took office, not long before Andrej’s fall — the last night he spent at home.

“Emergency department (ED) boarding is a public health crisis in the United States,” the report concluded. “Patients who are sick enough to require inpatient care can wait in the ED for hours, days, or even weeks.”

“Boarding contributes to increased mortality, medical errors, prolonged hospital stays, and greater dissatisfaction with care,” the report said.

The meeting proposal called for the formation of an expert panel to recommend solutions. In theory, a panel could have weighed in on key questions: Should hospitals — some of which are rich institutions — get paid an inpatient rate for boarding in the ED? Should they have to report boarding times and face penalties for excess? Should they be required to open more real beds, and should requirements for licensing be lessened? How can the country create more rehabilitation beds?

But since then, the Trump administration has dramatically cut that HHS agency’s staffing, as well as its grant programs. (Congress is still pushing to fund the agency.) The expert panel never formed, let alone offered solutions. The Centers for Medicare & Medicaid Services this year did initiate that will include voluntary reporting of boarding times in 2027, becoming mandatory in 2028. Bad marks will eventually affect Medicare reimbursement.

In an emailed statement, the Joint Commission, which certifies the nation’s hospitals, called boarding a “serious public health crisis” and “one of the most incredibly complex challenges in healthcare.” Although the organization does indirectly look at hospitals’ “ED throughput” from charts, such data is not comprehensive. Little information exists, for instance, about how many people’s last days are spent on stretchers, in hospital limbo.

None of this knowledge would have helped my dying husband. So I did what I’d promised myself I’d never do: I called a doctor friend, who called the hospital’s VIP office.

Suddenly Andrej was whisked to a real hospital room, with a bed that he could adjust to keep his head elevated, a tray he could eat from, a morphine pump, a TV, a bathroom, and a nurse call button at his side. A room with extra chairs, so his stepkids and friends could visit with gifts and mementos one last time. A room where the caring staff placed a chaise longue, where I could sleep over. That way, when he woke scared and coughing and yelling for me, I was there to hold his hand, adjust the oxygen, and push the button for an extra dose of narcotic.

Until, six days after we got in the ambulance and three days after we’d moved to this room, he woke early one morning, agitated and coughing, calling out, “Elisabeth?” I was there. But then, in a blink, he wasn’t.

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

This <a target="_blank" href="/health-industry/emergency-room-ed-boarding-hospital-beds-long-waits-crisis/">article</a&gt; first appeared on <a target="_blank" href="">Â鶹ŮÓÅ Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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They’re in Remission, but Their Medical Bills Aren’t: Cancer Survivors Navigate Soaring Costs /health-care-costs/cancer-survival-costs-testing-treatment-premiums-deductibles-trump/ Wed, 22 Apr 2026 09:00:00 +0000 /?p=2229400 Nearly four years after doctors declared Marielle Santos McLeod free of colon cancer, she has yet to feel liberated from the burden of medical expenses.

McLeod, who lives near Charleston, South Carolina, is still paying off chemotherapy bills that followed her 2017 diagnosis. She also now faces an onslaught of out-of-pocket costs for follow-up monitoring and care, including regular visits to a pulmonologist and allergist.

McLeod, 45, said she had already spent $2,500 in the first two months of the year and owes an additional $1,300 from a January colonoscopy. That’s on top of the $895 monthly premium for a health insurance plan that covers her family of six.

Those costs have led McLeod to ration her other care. Despite feeling intense chest pain since February, for example, she is putting off a CT scan and a visit to a heart specialist.

“You’re forced to pick and choose as to where your priorities really need to be,” said McLeod, director of strategic programs and partnerships at the Cancer Hope Network, a nonprofit that supports cancer patients. Even in that role, she struggles to navigate the financial aftermath of surviving the disease.

The cost of postcancer care often “keeps us hostage,” she said.

McLeod is one of nearly 19 million U.S. cancer survivors, many of whom continue to need prescriptions, doctor visits, and procedures to monitor their condition and manage posttreatment side effects. Of more than 1,200 cancer patients and survivors , about 47% said they had carried medical debt, with nearly half having owed more than $5,000, according to the American Cancer Society Cancer Action Network.

Marielle Santos McLeod poses, smiling, during chemo treatment. She holds up fingers on her left and right hands, totaling eight.
McLeod feels burdened by the cost of colon cancer treatment, even though she’s in remission. She’s still paying off chemotherapy bills that followed her 2017 diagnosis, on top of out-of-pocket costs for follow-up monitoring and care. (Gordon McLeod)

Yet health policy researchers and patient advocates said the experiences of cancer survivors reveal the limits of the Trump administration’s proposals to lower premiums, which may not help patients who accumulate large medical bills year after year. The proposals center on increasing the availability of high-deductible health plans, which have lower monthly payments but require patients to pay thousands of dollars out-of-pocket before coverage kicks in.

In addition, the administration has supported allowing insurers more leeway to sell plans that are not compliant with the Affordable Care Act. Such plans could bar people who have preexisting health conditions, like a cancer diagnosis, and exclude that ACA plans are required to cover.

The administration did not answer a request for comment on how its proposals would affect cancer survivors. But its supporters say, in general, people would have more flexibility to personalize coverage and more options for plans with lower monthly fees.

Michael Cannon, director of health policy studies at the Cato Institute, a libertarian think tank, believes patients would have better control over spending, and the option to choose what kind of care gets covered, if health plans were exempted from the ACA’s regulations. A person could opt for a plan that includes cancer treatment but not maternity care, for example.

History proves insurance coverage is not that simple, especially for people with preexisting conditions, said Jennifer Hoque, an associate policy principal with the American Cancer Society Cancer Action Network. When health plans could “pick and choose” enrollees based on preexisting conditions prior to the ACA, people needing the costliest care often struggled to find coverage, she said.

“They’re not going to choose a cancer survivor,” Hoque said of health insurers.

That was the case for Veronika Panagiotou, who said private insurers refused her coverage back in September 2013 because she had a high body mass index. Two months later, as a 25-year-old uninsured graduate student, she was diagnosed with non-Hodgkin lymphoma. The hospital treated her, she recalled, “and sent me all the bills.”

In January 2014, Panagiotou was able to buy one of the first ACA plans that went into effect. It covered chemotherapy and immunotherapy treatment, imaging, medications, hospital stays, weekly blood draws, a blood transfusion, and emergency room visits.

Now Panagiotou, 37, is cancer-free and works as director of advocacy and programs at Cancer Nation, a nonprofit advocacy group. Even though she is covered through her employer, Panagiotou said treatment-related expenses weigh heavily on her life decisions.

“Every choice I make, I think about cancer,” she said.

A woman stands inside at an office. She is smiling.
Veronika Panagiotou was 25 years old and uninsured in 2013 when she was diagnosed with non-Hodgkin lymphoma. The hospital treated her, she says, “and sent me all the bills.” Now she’s cancer-free and insured through work. But treatment-related expenses still weigh heavily on her life decisions, she says. (Kara Kenan)

Chris Bond, a spokesperson for AHIP, the main health insurance trade association, said its members are working to improve access to coverage. But that can be a challenge when doctors and drugmakers are hiking prices, he said. Health plans are trying to “shield Americans from the full impact of those rising costs,” Bond said.

The Lymphoma Research Foundation has seen a 10% increase in applications to its patient aid fund this year, CEO Meghan Gutierrez said. “This trajectory suggests that financial safety nets, when they exist, are straining,” she said.

Rising prices are affecting everyone, regardless of the kind of health insurance they have, if any, said Brian Blase, president of Paragon Health Institute, a Republican-aligned think tank. “The biggest challenge for cancer patients isn’t the type of coverage,” he said. “It’s the underlying cost of care.”

Blase pointed to President Donald Trump’s as potentially helpful to cancer survivors. The Medicare Drug Price Negotiation Program, established by the Inflation Reduction Act of 2022, required the Department of Health and Human Services to negotiate prices for certain high-cost drugs, to lower prices for the federal health insurance program for people ages 65 and older. Drugs for breast, prostate, and kidney cancers are already on that list, .

Yet Hoque fears efforts to weaken ACA protections and financial support for marketplace plans will give cancer survivors — who she said tend to “hang on to insurance for dear life” — fewer options, especially between jobs or during career changes.

Erin Jones, a 31-year-old food policy researcher living in Fort Collins, Colorado, who was diagnosed with Hodgkin lymphoma as a young adult, is now cancer-free but still sees two oncologists, visits a high-risk breast clinic, and gets a breast MRI annually. Jones gets health insurance through the university where she works, and said she recently deferred acceptance to a PhD program partly due to uncertainty over affordable coverage.

“I don’t have the freedom to do the things I want to do as easily,” she said, “because I am constantly worried about health insurance.”

Costs related to surviving cancer, including monitoring for recurrence and treatment of side effects, were expected to reach $246 billion by 2030, up from $183 billion in 2015, according to .

Advancements in both detecting and curing cancer have resulted in a higher percentage of people surviving five years or more after diagnosis, according to the American Cancer Society. The number of survivors is expected to grow to more than 22 million people by 2035, .

Despite these advancements, the cost of treatment can steal the spotlight, said Ezekiel Emanuel, a co-director of the Healthcare Transformation Institute at the University of Pennsylvania and a onetime health policy adviser to former President Barack Obama.

An oncologist, Emanuel said he had observed patients make the difficult decision to delay or skip postcancer care as a result.

“Even when we triumph,” he said, “we don’t seem to be able to have a celebration.”

Breast Cancer Took Her Job, Her House, and All of Her Savings

Ann Ramsdell, 60 
Seattle

Even today, Ann Ramsdell is struggling with the financial aftermath of her 2009 breast cancer diagnosis. She not only accumulated medical debt, but she also lost income from being unable to work as a science researcher. Eventually she depleted her savings and lost her house. Today she pays about $450 in monthly insurance premiums and still pays thousands of dollars out-of-pocket per month for ongoing care connected to her cancer, which means she can’t always afford groceries. “Surviving cancer is hard enough without the added burden of trying to survive financially,” she said. 

A Decade After Her Cancer Diagnosis, She Worries About Paying For Care

Erin Jones, 31 
Fort Collins, Colorado 

Erin Jones, a food policy researcher living in Fort Collins, Colorado, who was diagnosed with Hodgkin lymphoma as a young adult, is now cancer-free but still sees two oncologists, visits a high-risk breast clinic, and gets a breast MRI annually. Jones gets health insurance through the university where she works, and said she recently deferred acceptance to a PhD program partly due to uncertainty over affordable health coverage. “I don’t have the freedom to do the things I want to do as easily, because I am constantly worried about health insurance,” she said.

Are you struggling to afford your health insurance? Have you decided to forgo coverage? Click here to contact Â鶹ŮÓÅ Health News and share your story.

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

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Pennsylvania Town Faces Fallout From Trump’s Environmental Rule Rollback /public-health/clairton-pennsylvania-us-steel-make-america-healthy-again-maha-coal-coke/ Mon, 13 Apr 2026 09:00:00 +0000 hugs the west bank of Pennsylvania’s Monongahela River, belching out emissions from turning superheated coal into a carbon-rich fuel.

Researchers say the children at about a mile away pay the price. They discovered the students there and at other elementary schools near major pollution sites in Pennsylvania had than other children in the state.

Residents and environmental advocates saw reason for hope and relief in the form of a designed to tamp down on coke oven plant pollution. But even before it took effect, President Donald Trump granted in the U.S. — including the one in Clairton — a from the standards.

Trump and Republicans have sought to align themselves with the Make America Healthy Again movement’s populist ideals, such as improving Americans’ food choices and reducing corporate harm to the environment. But the administration is ratcheting up its attacks on the very environmental protections that MAHA followers hold dear.

Taken together, these anti-environmental initiatives will lead to more pollution-related illnesses and higher health care spending, health researchers say. They could also have political ramifications, eroding MAHA’s support for GOP candidates in the November midterm elections if followers believe the party is more beholden to industry than to the movement’s agenda.

All 11 Active Coke Plants in the US Are Exempt From EPA Rules (Locator map)

, including about a quarter of Republicans, support rolling back environmental regulations, according to a poll by the Energy Policy Institute at the University of Chicago and The Associated Press-NORC Center for Public Affairs Research.

Some MAHA supporters believe voters will support Republicans because the Trump administration is delivering on other goals important to the movement.

“MAHA has a pretty diverse set of policy goals, ranging from medical freedom to food and the environment,” said David Mansdoerfer, who served in Health and Human Services leadership during Trump’s first term. “In totality, the Trump administration has strongly delivered on much of the MAHA agenda.”

While MAHA voters have been upset at some of the administration’s actions that promote industry, it’s hard to know how that may play out in the midterms, said Christopher Bosso, a professor of public policy and politics at Northeastern University. Many were disillusioned by a Trump they viewed as promoting glyphosate, which HHS Secretary Robert F. Kennedy Jr. has .

“The glyphosate thing really ticks off a lot of them; they’re really upset,” Bosso said. “Kennedy said it was poison. If it is a poison, why aren’t we regulating it? That’s where the tension plays out.”

The situation with the Clairton coke plant and the others granted exemptions from regulations underscores the potential public health risks. Six of the 11 factories had “high priority” violations of the Clean Air Act as of last May, according to a Â鶹ŮÓÅ Health News analysis. Five coke oven plants logged major violations every quarter for at least three years straight.

“Poisoning continues to some of the most vulnerable residents of Allegheny County,” , who had lived in nearby Glassport, Pennsylvania, said at a about the coke plant.

Environmental Protection Agency spokesperson Brigit Hirsch said the president gave companies extra time because the technology needed to meet a new standard isn’t ready yet.

“Forcing plants to comply before the tools exist doesn’t make the air cleaner, it just shuts down facilities and kills jobs with nothing to show for it,” Hirsch said.

But environmental groups disagree that the plants were unable to comply at a reasonable cost, and they say the exemption from the EPA requirements shows the Trump administration is prioritizing the coal industry at the expense of public health.

“The Trump administration’s relentless actions to dismantle lifesaving environmental protections are a gut punch to the administration’s own promise to Make America Healthy Again,” said Cathleen Kelly, a senior fellow at the Center for American Progress, a liberal think tank.

Hard Times in Clairton

Sprawled across , the Clairton plant operates ovens in which coal is heated to as much as 2,000 degrees Fahrenheit to make up to 4.3 million tons annually of the carbon-rich fuel known as coke. The product is used in blast furnaces to produce iron.

It’s a dirty operation. The process leads to hazardous emissions of that the Centers for Disease Control and Prevention says can lead to anemia and leukemia, as well as , which can trigger severe asthma.

The Clairton operation has had repeated problems with its emissions and operations, including and of toxic chemicals. The plant has received more than from the Allegheny County Health Department since 2022, stemming largely from a fire in 2018 that led to high emissions, and violated the Clean Air Act in each of the last , with the last compliance monitoring in July 2025, according to the EPA.

Nippon Steel Corp. last year acquired U.S. Steel, which now operates as a subsidiary. The company didn’t respond to an email seeking comment. U.S. Steel said it spends $100 million annually on environmental compliance at Clairton.

“Environmental stewardship is a core value at U. S. Steel, and we remain committed to the safety of our communities,” spokesperson Andrew Fulton said in a written statement.

Clairton was once bustling with movie theaters, a mix of grocery stores, and riverside parks, with a dance pavilion and . But the decline of steel hit hard. The town’s population dwindled from more than in the mid-20th century to as of 2024. until they were razed and replaced with signs saying to keep out. The 1978 movie , which depicts a hardscrabble industrial town, is partly set there. Today, about 33% of residents live in poverty.

A street in Clairton, Pennsylvania, near the city’s coke plant in 2020. (Brendan Smialowski/AFP via Getty Images)

While the plant brings jobs and revenue, residents of the town and the surrounding areas have long complained about health problems they attribute to its emissions.

“My parents are gone. My mom had cancer, my dad,” , a Clairton resident, said at a 2025 County Council meeting. “I lost a lot of loved ones and seen other ones pass because of this mill.”

Pediatric allergist looked into asthma rates among 1,200 children who attended school near major pollution sites in the area — including students at Clairton Elementary School. They had nearly triple the national rate of asthma, with the highest rate among African American youth, according to she led.

“We were shocked,” she said. “It was double or triple what we expected. The people are proud of their industrial background. We need steel, but they’re not running a good enough operation.”

A found children with asthma living near the coke plant had an 80% higher chance of missing school when sulfur dioxide pollution was elevated.

Allegheny County, which includes Clairton and Pittsburgh, is home to a number of industrial plants, and to increased deaths, chronic heart disease, and adverse birth outcomes. It was ranked in the top 1% of counties in the nation for cancer risk from stationary industrial air pollutants in a 2018 .

Clairton has an age-adjusted cancer death rate of 170 per 100,000 people, higher than the broader county’s rate of 150 deaths per 100,000 people, based on a Â鶹ŮÓÅ Health News analysis of .

The American Lung Association in 2025 gave the county an F rating for its particle pollution levels. PennEnvironment, an environmental group that was party to a settlement with U.S. Steel involving the Clairton plant, says the coke operation caused of toxic releases in 2021, which amounted to 60% of all such releases in the county that year.

From 2020 through 2025, the Clairton plant racked up more in fines from Clean Air Act penalties than any other coke oven facility nationwide, costing U.S. Steel over $10 million, according to EPA facility reports.

“We are deeply concerned with exemptions, which allow air toxics to affect public health,” Allegheny County Health Department spokesperson Ronnie Das said in a statement.

The Clairton plant provides and hundreds of millions of dollars in tax revenue to the area. The jobs help generate nearly $3 billion in annual economic output, according to estimates from the Pennsylvania Manufacturers’ Association.

Some community members and advocacy groups hoped air quality would improve after the coke plant was sold. has pledged to upgrade facilities in the Monongahela River Valley.

Politics, Waivers, and Environmental Concerns

Under the Biden-era rule, coke plants were supposed to start meeting from the lids and doors of ovens that heat coal. They would also have had to monitor for benzene at their property lines and take steps to lower emissions of the carcinogen if they exceeded certain levels. Compliance deadlines were set for July 2025.

The Trump administration, which has sought to revive the coal industry, intervened. Last year, it , including coke plants such as Clairton’s, to seek from issued in 2024 by the EPA.

Then Trump in November went further, granting all coke plants a two-year compliance break.

The reprieve was necessary, the EPA spokesperson Hirsch said, because the requirements would have meant extra costs for the industry when standards already in effect work “extremely well” at reducing pollution.

Hirsch also said the agency under Trump is protecting the environment, pointing to action the administration has taken to called PFAS, prevent lead poisoning, strengthen chemical safety, and protect Americans’ food and water supply.

“We are building a future where the next generation of Americans is the healthiest in our nation’s history, and they inherit the cleanest air, land and water in the world,” Hirsch said.

However, the administration has taken several steps that environmental advocates say weaken health protections.

The president’s executive order on glyphosate, an herbicide the World Health Organization has linked to cancer, which touched off a who said they felt betrayed. The EPA has decided to stop considering the of reducing pollution when making policy decisions, instead focusing on the cost to industry of complying with rules. The agency also rescinded the legal and scientific basis that had long established as dangerous to public health.

The actions have rankled some MAHA enthusiasts who counted on the administration to tackle chronic disease, especially among children. A petition to Trump on with more than 15,000 signatures called for the removal of EPA Administrator Lee Zeldin, it said supported corporations over MAHA goals.

Some MAHA enthusiasts have sounded off on social media.

“No one should believe that MAHA is being upheld at the EPA at this point,” , a leader of American Regeneration, which focuses on a conservation approach to farming, said Feb. 8 on X.

, host of a , also aired her concerns on X, saying “there is something really freaking spooky going on at the EPA and I refuse to let the American people be gaslit into thinking they’re upholding the MAHA agenda.”

“A significant number of people who supported Trump are worried these rollbacks are going to hurt their health,” said , a Democratic strategist and the founder of the communications firm Third Degree Strategies. “The MAHA voters, especially women, are very sensitive to this. Republicans have put themselves in a bind.”

MAHA supporters shouldn’t be surprised by a Trump administration that doesn’t prioritize environmental protections over industry, because the president has always championed fossil fuels, said Kyle Kondik, managing editor of Sabato’s Crystal Ball, a nonpartisan election forecasting newsletter published by the University of Virginia Center for Politics.

The coke plant exemptions have disappointed some community members, environmental groups, and regulators concerned about public health and emissions.

Nearly 300,000 people live within 3 miles of the 11 active coke plants across the U.S., according to EPA data compiled by the Environmental Defense Fund.

Weakening environmental rules has helped boost Trump with the U.S. coal industry. In February, mining industry executives and lobbyists gathered at the White House, .

Coal miners, including some in white hard hats bedecked with American flags, with a bronze-colored trophy emblazoned “The Undisputed Champion of Beautiful Clean Coal.”

At the event, Trump praised their work. “We love clean, beautiful coal,” he said.

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

This <a target="_blank" href="/public-health/clairton-pennsylvania-us-steel-make-america-healthy-again-maha-coal-coke/">article</a&gt; first appeared on <a target="_blank" href="">Â鶹ŮÓÅ Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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These Women Had Their Breasts Removed To Thwart Cancer. Then Came the Pain. /insurance/post-mastectomy-pain-syndrome-breast-cancer-surgery-pmps/ Mon, 06 Apr 2026 09:00:00 +0000 /?post_type=article&p=2175041 Three weeks after Sophia Bassan’s mastectomy, she felt a stabbing pain beneath her right armpit. In the following months, painful shocks radiated through her chest and back. Her body became so sensitive that at times she couldn’t wear a shirt or lift a fork to her mouth.

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

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

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

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

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

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

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

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

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

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

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

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

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

Pain Often Dismissed

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

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

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

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

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

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

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

A woman leans over a dining room table, where she handles a medical device.
With no clear treatment for PMPS, Bassan and others have experimented with options such as nerve stimulation machines. “Doctors act like it is so rare, like they’re so baffled,” Bassan says of PMPS. “But this is statistically predictable.” (Amy Maxmen/Â鶹ŮÓÅ Health News)
A small medical device rests on a wooden table.
Some people with post-mastectomy pain have gotten temporary relief from transcutaneous electrical nerve stimulation machines, which may change or block pain signals to the brain. (Amy Maxmen/Â鶹ŮÓÅ Health News)

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

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

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

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

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

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

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

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

A woman stands beside an oil painting of her grandmother as a young woman. They resemble one another.
Bassan stands beside a painting of her grandmother, who died of breast cancer at 40. With a family history of breast cancer and a genetic test showing she was at risk, Bassan decided to undergo a preventive mastectomy. (Amy Maxmen/Â鶹ŮÓÅ Health News)

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

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

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

Other women have no real choice.

No ‘Gold Standard’ Solution

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

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

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

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

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

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

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

And sometimes they never find it.

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

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

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

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

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

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

This <a target="_blank" href="/insurance/post-mastectomy-pain-syndrome-breast-cancer-surgery-pmps/">article</a&gt; first appeared on <a target="_blank" href="">Â鶹ŮÓÅ Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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State-Run Insurance Plans for Foster Kids Leave Some of Them Without Doctors /health-care-costs/foster-children-insurance-specialized-medicaid-healthy-blue-north-carolina/ Thu, 02 Apr 2026 09:00:00 +0000 Ollie Super has moved in and out of cancer treatment since she was diagnosed with neuroblastoma as a toddler in foster care. Now 8, the second grader is dealing with it again. Her cancer came back late last year.

Ollie’s parents, who adopted her in 2020, tried to sign her up for a clinical trial using — which genetically reprograms a patient’s white blood cells to help them fight cancer — at UNC Health in Chapel Hill, North Carolina, an hour-and-a-half drive from their home in Eden.

Her mother, Britany Super, described it as Ollie’s “last option.”

But in early March, Super recalled, UNC Health’s financial office told them the bad news: The state’s new insurance for kids in foster care wasn’t going to pay for the treatment.

In December, Ollie became one of hundreds of thousands of kids nationwide enrolled in a special kind of public health insurance for people served by the foster care system. That insurance, known as a specialized managed care plan, is part of Medicaid, the federal-state program that covers health costs for people with low incomes or disabilities.

North Carolina is one of 14 states with such specialized foster care plans, according to the National Academy for State Health Policy. The plans differ by state, but each is meant to expand coverage for children in the foster care system — and for kids who were adopted out of it, such as Ollie and her siblings.

Yet, as in other states that have struggled when adding such plans, North Carolina families have faced hurdles obtaining care. Thousands of doctors whose services were covered under Medicaid were not included in the specialized plan — which is costing the state $3.1 billion over four years — when it rolled out on Dec. 1. That left guardians and parents of kids adopted out of the system scrambling to figure out whether they would have to find new health care providers or new insurance.

Britany Super administers her daughter’s pain medication through Ollie’s gastrostomy tube. (Allison Lee Isley for Â鶹ŮÓÅ Health News)
When Britany Super tried to get an appointment to treat her daughter Ollie’s cancer, she was told North Carolina’s health insurance for foster kids wouldn’t cover it. (Allison Lee Isley for Â鶹ŮÓÅ Health News)
Ollie and her mother at their home in Eden. Ollie’s parents adopted her in 2020. (Allison Lee Isley for Â鶹ŮÓÅ Health News)

In North Carolina, the insurance plan’s stumbles have added another layer of complication around health care issues. The state — like many others — is already over expected Medicaid cuts in the wake of congressional Republicans’ One Big Beautiful Bill Act. A separate Medicaid funding shortfall also prompted a push to cut care providers’ reimbursement rates.

Texas, which established its plan 18 years ago, that its foster families also had a hard time finding doctors on the insurance. In , researchers for the state reported as early as 2016 that there was .

Illinois’ plan by the Centers for Medicare & Medicaid Services over a lack of access to care. Research concluded that California’s plan children with adequate mental health services. Georgia’s alarmed state officials enough to calling for children to be removed from the plan and put back on other Medicaid plans.

But such specialized plans for kids in foster care continue to gain traction. Four states have started their own plans in the past five years, said , the senior director of children and family health at the National Academy for State Health Policy, and she said it’s likely more will adopt them soon.

showing how these programs are faring, Medicaid policy analysts said. It’s therefore difficult to know why they’ve run into rollout problems or whether they’ve improved access to care. That makes the plans risky, said , a research professor at Georgetown University’s Center for Children and Families.

“The states that are going in this direction, unless they have data to support it, are experimenting,” Schneider said. “They’re putting all their eggs in one basket, so they need to pay close attention.”

Rough Rollout

North Carolina’s specialized insurance plan for foster kids experienced problems the day it rolled out.

The state automatically enrolled Ollie and about 32,000 other people in , called . North Carolina officials had said the program would improve health care access for foster children, who often have medically complex needs and move frequently.

But foster families quickly began hearing that their health care providers were not taking the insurance, according to several families who recounted their experiences fighting to get their children’s procedures covered under the plan.

UNC Health, a state-run health system that is , with nearly 4,400 physicians, initially, which is why it told Super that Ollie’s CAR T-cell treatment wouldn’t be covered.

After more than two months of limbo for families, UNC Health ultimately in mid-March with Blue Cross Blue Shield of North Carolina, which runs the plan.

But some North Carolina doctors still don’t accept Healthy Blue insurance.

, interim deputy secretary for North Carolina’s Medicaid program, said her office to expand its network, even though it already has what she called an “adequate” number of providers. North Carolina’s health department and Blue Cross Blue Shield did not answer Â鶹ŮÓÅ Health News’ questions about how many providers are covered by the new insurance.

“We welcome qualified providers who want to join,” said Blue Cross Blue Shield of North Carolina spokesperson Sara Lang.

Other problems . As thousands of health care records move over to a statewide database managed by Healthy Blue, children’s doctors are struggling to track their patients’ medical histories, said foster care advocates and pediatricians. Parents reported problems seeing health records, finding themselves locked out of online portals. Others couldn’t access prescriptions. Surgeries got delayed. Appointments were canceled.

“Network management for any plan is an ongoing process,” Lang said.

All this meant added red tape and heartache for the caregivers of children like Ollie with complex medical needs — those the .

Ollie was diagnosed with neuroblastoma at age 2, just as Britany and Jason Super were adopting her out of foster care. (Britany Super)
When she goes for checkups at a hospital in Charlotte, North Carolina, Ollie sometimes gets a visit from a therapy dog named Sage. (Britany Super)

Gearing Up

Cancer has been part of Ollie’s life since she was 2. She was in the process of getting adopted out of foster care when she began chemotherapy and radiation treatments, then received two stem cell transplants, Super recalled.

Surgeons installed temporary tubes in a vein near her heart and a feeding tube in her abdomen. Her hair fell out as the treatment intensified, and a thin layer of skin peeled off, forcing her new family to wear surgical gowns and gloves when they wanted to be close.

“She doesn’t remember life outside of going to doctors and being in a hospital,” Super said.

Ollie still has a port in her chest ready for whenever she needs intravenous medicine, and her monthly doctor appointments are about to become weekly. During an emergency room visit in mid-March, doctors told Super her daughter’s cancer had spread. Ollie will need more chemotherapy before her body is ready for the more advanced treatment.

But the Supers, thrown into uncertainty for more than two months, still feel some relief. They’re preparing for back-and-forth drives for the CAR T-cell therapy treatments in Chapel Hill. And they’re grateful, even if it means Ollie will spend at least five more weeks in and out of a hospital.

Reliable health insurance will be vital for Ollie, and Healthy Blue leaders said they are talking with doctors, parents, and others to make sure the plan is working. Her procedures carry multimillion-dollar price tags, her mother said, but having her bills seamlessly covered allows the family to focus on Ollie’s treatment.

“The biggest challenges for her will be in the first few months of the study,” said Super, who knows the therapy’s side effects include fever, fatigue, and confusion. “But I’m hoping that after that, the CAR T-cells will do their job and fight the cancer and she can continue to have a playful, active life.”

That means, they hope, the girl could be at home more often with her five siblings and the three family dogs, including Remy, a border collie mix who is Ollie’s favorite.

Super relishes those precious moments for her daughter — “being a kid and doing kid things.”

Britany hopes Ollie’s new cancer treatment will help her daughter “continue to have a playful, active life.” (Allison Lee Isley for Â鶹ŮÓÅ Health News)
Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

This <a target="_blank" href="/health-care-costs/foster-children-insurance-specialized-medicaid-healthy-blue-north-carolina/">article</a&gt; first appeared on <a target="_blank" href="">Â鶹ŮÓÅ Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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Journalists Shine Light on Out-of-Reach Insurance Prices, AI’s Role in Claims Disputes, and Susie Wiles /on-air/on-air-march-21-2026-insurance-prices-measles-spread-ai-vaccine-ruling-susie-wiles/ Sat, 21 Mar 2026 09:00:00 +0000

Â鶹ŮÓÅ Health News senior correspondent Renuka Rayasam discussed the Â鶹ŮÓÅ Health News series “Priced Out,” which focuses on the health insurance crisis, on An Arm and a Leg on March 19.


Â鶹ŮÓÅ Health News rural health reporter Andrew Jones discussed the spread of measles across the Carolinas on WUNC’s Due South on March 17.


Céline Gounder, Â鶹ŮÓÅ Health News’ editor-at-large for public health, discussed on CBS News 24/7’s The Daily Report on March 16 how U.S. hospitals and insurers are turning to AI to settle disputes over medical claims and payments. On March 17, she outlined the court ruling blocking the Trump administration’s vaccine policy changes for children on CBS News’ CBS Mornings. Gounder also discussed Susie Wiles’ decision to stay on as White House chief of staff amid breast cancer treatment on CBS News 24/7’s The Takeout on March 16.


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

This <a target="_blank" href="/on-air/on-air-march-21-2026-insurance-prices-measles-spread-ai-vaccine-ruling-susie-wiles/">article</a&gt; first appeared on <a target="_blank" href="">Â鶹ŮÓÅ Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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