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.

, 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 �������ýҕ�l 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.

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 �������ýҕ�l 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 furor among MAHA enthusiasts 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.

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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 �������ýҕ�l 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 �������ýҕ�l 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.

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

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

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

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

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

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

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

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

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

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

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

Other women have no real choice.

No ‘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.”

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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.

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 Florida, 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 access problems 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 �������ýҕ�l 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 .

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.”

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• (starts at 21:03).
• Read Rayasam’s “When Health Insurance Costs More Than the Mortgage.”

�������ýҕ�l Health News rural health reporter Andrew Jones discussed the spread of measles across the Carolinas on WUNC’s Due South on March 17.

• Read Jones’ “Hospitals Fighting Measles Confront a Challenge: Few Doctors Have Seen It Before.”

Céline Gounder, �������ýҕ�l 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.

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Among them: scientists who pioneered cancer treatments, researched tick-borne diseases, or worked to prevent tobacco use. 

We spoke to a half dozen scientists who said they left the agency because of the tumult of 2025 and talked about the work they left behind. They say the exodus from the world’s largest public funder of biomedical research will harm the nation’s ability to respond to illness. 

“People are going to get hurt,” said Sylvia Chou, a scientist who worked at the National Cancer Institute in Rockville, Maryland, for over 15 years before she left in January. “There’s going to be a lot more health challenges and even deaths, because we need science in order to help people get healthy.” 

The NIH consists of 27 institutes and centers, each with a different focus. Major research areas include cancer; infectious diseases; aging-related diseases such as Alzheimer’s; heart, lung, and blood diseases; and general medicine. 

Over decades, the value of the NIH may be the one thing everyone in Washington has agreed on. Lawmakers have routinely boosted its funding — even for this fiscal year, in defiance of the White House, which had proposed cutting the agency’s funding by 40%. 

Our reporting showed that, nonetheless, the Trump administration’s actions to curb certain research and push out scientists perceived as disloyal are having far-reaching repercussions. The NIH workforce stands at about 17,100 people — its lowest level in at least two decades. 

Scientists across specializations outlined challenges that made them decide to leave. They included delays in accessing research equipment and supplies, the termination of funds for topics the Trump administration deemed off-limits, and delayed or denied travel authorizations. 

Even research aligned with the Trump administration’s stated priorities has suffered, they said. They questioned whether the NIH could continue to fulfill its mission to “enhance health, lengthen life, and reduce illness.” 

“It’s clear when someone comes out with a drug and now you’ve just cured a disease. But you never know which ones could have been cured,” said Daniel Dulebohn, a researcher who spent nearly two decades at Rocky Mountain Laboratories in Hamilton, Montana. “We don’t know what we’ve lost.” 

Dulebohn left the NIH’s infectious disease and allergy institute in September and is considering leaving the scientific field altogether.

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“There are enough reports of it, enough interest in it, that we actually did — ivermectin, in particular — did engage in sort of a better preclinical study of its properties and its ability to kill cancer cells,” said Anthony Letai, a physician the Trump administration appointed as NCI director in September.

Letai did not cite new evidence that might have prompted the institute to research the effectiveness of the antiparasitic drug against cancer. The drug, largely used to treat people or animals for infections caused by parasites, is a popular dewormer for horses.

“We’ll probably have those results in a few months,” Letai said. “So we are taking it seriously.”

He spoke about ivermectin at a Jan. 30 event, “Reclaiming Science: The People’s NIH,” with National Institutes of Health Director Jay Bhattacharya and other senior agency officials at Washington, D.C.’s Willard Hotel. The MAHA Institute hosted the discussion, framed by the “Make America Healthy Again” agenda of Health and Human Services Secretary Robert F. Kennedy Jr. The National Cancer Institute is the largest of the NIH’s 27 branches.

During the covid pandemic, ivermectin’s popularity surged as fringe medical groups promoted it as an effective treatment. it isn’t effective against covid.

Ivermectin has become a symbol of resistance against the medical establishment among MAHA adherents and conservatives. Like-minded commentators and wellness and other online influencers have hyped — without evidence — ivermectin as a miracle cure for a host of diseases, including cancer. Trump officials have pointed to research on ivermectin as an example of the administration’s receptiveness to ideas the scientific establishment has rejected.

“If lots of people believe it and it’s moving public health, we as NIH have an obligation, again, to treat it seriously,” Bhattacharya said at the event. at Duke University, Bhattacharya recently said he wants the NIH to be “the research arm of MAHA.”

The decision by the world’s premier cancer research institute to study ivermectin as a cancer treatment has alarmed career scientists at the agency.

“I am shocked and appalled,” one NCI scientist said. “We are moving funds away from so much promising research in order to do a preclinical study based on nonscientific ideas. It’s absurd.”

�������ýҕ�l Health News granted the scientist and other NCI workers anonymity because they are not authorized to speak to the press and fear retaliation.

HHS and the National Cancer Institute did not answer �������ýҕ�l Health News’ questions on the amount of money the cancer institute is spending on the study, who is carrying it out, and whether there was new evidence that prompted NCI to look into ivermectin as an anticancer therapy. Emily Hilliard, an HHS spokesperson, said NIH is dedicated to “rigorous, gold-standard research,” something the administration has repeatedly professed.

A preclinical study is an early phase of research conducted in a lab to test whether a drug or treatment may be useful and to assess potential harms. These studies take place before human clinical trials.

The scientist questioned whether there is enough initial evidence to warrant NCI’s spending of taxpayer funds to investigate the drug’s potential as a cancer treatment.

The FDA has approved ivermectin for certain uses in humans and animals. Tablets are used to treat conditions caused by parasitic worms, and the FDA has approved ivermectin lotions to treat lice and rosacea. Two scientists involved in its discovery , tied to the drug’s success in treating certain parasitic diseases.

The FDA that large doses of ivermectin can be dangerous. Overdoses can cause seizures, comas, or death.

Kennedy, supporters of the MAHA movement, and some conservative commentators have promoted the idea that the government and pharmaceutical companies quashed ivermectin and other inexpensive, off-patent drugs because they’re not profitable for the drug industry.

“FDA’s war on public health is about to end,” Kennedy wrote in an that has since gone viral. “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.”

Previous laboratory that ivermectin could have anticancer effects because it promotes cell death and inhibits the growth of tumor cells. “It actually has been studied both with NIH funds and outside of NIH funds,” Letai said.

However, there is no evidence that ivermectin is safe and effective in treating cancer in humans. from a small clinical trial that gave ivermectin to patients with one type of metastatic breast cancer, in combination with immunotherapy, found no significant benefit from the addition of ivermectin.

Some physicians are concerned that patients will delay or forgo effective cancer treatments, or be harmed in other ways, if they believe unfounded claims that ivermectin can treat their disease.

“Many, many, many things work in a test tube. Quite a few things work in a mouse or a monkey. It still doesn’t mean it’s going to work in people,” said Jeffery Edenfield, executive medical director of oncology for the South Carolina-based Prisma Health Cancer Institute.

Edenfield said cancer patients ask him about ivermectin “regularly,” mostly because of what they see on social media. He said he persuaded a patient to stop using it, and a colleague recently had a patient who decided “to forgo highly effective standard therapy in favor of ivermectin.”

“People come to the discussion having largely already made up their mind,” Edenfield said.

“We’re in this delicate time when there’s sort of a fundamental mistrust of medicine,” he added. “Some people are just not going to believe me. I just have to keep trying.”

by clinicians at Cincinnati Children’s Hospital Medical Center in Ohio detailed how an adolescent patient with metastatic bone cancer started taking ivermectin “after encountering social media posts touting its benefits.” The patient — who hadn’t been given a prescription by a clinician — experienced ivermectin-related neurotoxicity and had to seek emergency care because of nausea, fatigue, and other symptoms.

“We urge the pediatric oncology community to advocate for sensible health policy that prioritizes the well-being of our patients,” the clinicians wrote.

The lack of evidence about ivermectin and cancer hasn’t stopped celebrities and online influencers from promoting the notion that the drug is a cure-all. On a January 2025 episode of Joe Rogan’s podcast, actor Mel Gibson claimed that a combination of drugs that included ivermectin cured three friends with stage 4 cancer. The episode has been viewed more than 12 million times.

Lawmakers in a handful of states have made the drug available over the counter. And Florida — which, under Republican Gov. Ron DeSantis, has become a hotbed for anti-vaccine policies and the spread of public health misinformation — announced last fall that the state plans to fund research .

The Florida Department of Health did not respond to questions about that effort.

Letai, previously a Dana-Farber Cancer Institute oncologist, started at the National Cancer Institute after months of upheaval caused by Trump administration policies.

“What you’re hearing at the NIH now is an openness to ideas — even ideas that scientists would say, ‘Oh, there’s no way it could work’ — but nevertheless applying rigorous scientific methods to those ideas,” Bhattacharya said at the Jan. 30 event.

A second NCI scientist, who was granted anonymity due to fear of retaliation, said the notion that NIH was not open to investigating the value of off-label drugs in cancer is “ridiculous.”

“This is not a new idea they came up with,” the scientist said.

Letai didn’t elaborate on whether NCI scientists are conducting the research or if it has directed funding to an outside institution. Three-quarters of the cancer institute’s research dollars go to outside scientists.

He also aimed to temper expectations.

“At least on a population level,” Letai said, “it’s not going to be a cure-all for cancer.”

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Brugge lifted up one of the jars and gazed at it with reverence. Each jar holds samples of breast tissue donated by patients after they underwent a tissue biopsy or breast surgery — samples that may reveal a new way to prevent breast cancer.

Brugge and her research team have analyzed the cell structure of more than 100 samples.

Using high-powered microscopes and complex computer algorithms, they diagram each stage in the development of breast cancer: from the first sign of cell mutation to the formation of tiny clusters, well before they are large enough to be considered tumors.

Their quest is to prevent breast cancer, a disease that afflicts roughly 1 in 8 U.S. women over their lifetimes, as well as some men. Their ultimate goal is to relieve the pain, suffering, and risk of death that accompany this disease. And their painstaking work, unspooling across six years of a seven-year, , has yielded results.

In late 2024, Brugge and her colleagues in breast tissue that contain the genetic seeds of breast tumors.

And they discovered that these “seed cells” are surprisingly common. In fact, they are present in the normal, healthy tissue of every breast sample her lab has examined, Brugge said, including samples from patients who haven’t had breast cancer but have had surgery for other reasons, such as breast reduction or a biopsy that proved benign.

The next research challenge for Brugge’s lab is clear: Find ways to detect, isolate, and terminate the mutant cells before they can spread and form tumors.

“I’m excited about what we’re doing right now,” Brugge said. “I think we could make a difference, so I don’t want to stop.”

Work in Brugge’s lab slowed significantly last year. In April, her from the National Cancer Institute at the National Institutes of Health was frozen, along with virtually all other federal money awarded to Harvard researchers.

The Trump administration said it was withholding the funds of antisemitism on campus.

Some of Brugge’s lab staff lost federal fellowships that funded their work. Brugge told others funded through the NIH grant that she couldn’t guarantee their salaries. In all, Brugge lost seven of her 18 lab employees.

In September, the funding for the NIH grant was restored. But in the intervening months, the Trump administration said Brugge and other Harvard researchers for the next round of multiyear grants.

A federal judge , but Brugge had missed the deadline to apply for renewal. So her current funding will end in August.

Brugge scrambled to secure private funding from foundations and philanthropists. She was then able to reinstate two positions for at least a year — but job applicants are wary.

Across the United States, the future of federal funding for cancer research is uncertain.

President Donald Trump has proposed by nearly 40% in the 2026 fiscal year.

In a , the White House said the “NIH has broken the trust of the American people with wasteful spending, misleading information, risky research, and the promotion of dangerous ideologies that undermine public health.”

But Congress has other plans: The released on Jan. 20 that would set the NIH’s budget at $48.7 billion, $415 million more than in the 2025 fiscal year.

In the meantime, advocates such as with the are reminding lawmakers that the cancer death rate has declined — — due in part to federally funded research advances.

“But we still have an incredible ways to go before we can say that we’ve changed the trajectory of cancer,” Fleury said. “There are still cancer types that are fairly lethal, and there are still populations of people for whom their experience of cancer is vastly different from other groups.”

Reductions in research funding will have a direct impact on treatment options for patients, Fleury said. For example, a 10% cut to the NIH budget would eventually result in two fewer new drugs or treatments per year, according to from the nonpartisan Congressional Budget Office.

A recent study looked at drugs that were developed through NIH-funded research and approved by the Food and Drug Administration since 2000. More than half those drugs would probably if the NIH had been operating with a 40% smaller budget.

“We can’t say, ‘But for that grant, that [specific] drug would not have come into existence,’” said , a co-author of the study and a professor at the Massachusetts Institute of Technology. But fewer drugs would have made it to market, he said. “It makes us at least want to pause and say, ‘What are we doing here? Are we shooting ourselves in the foot?’”

Amid all the uncertainty, Brugge has trouble focusing on her goal of finding new ways to prevent breast cancer.

Nowadays, she spends about half her time searching for new sources of funding, managing her remaining employees’ anxieties, and monitoring the most recent news about Harvard, the Trump administration, and the NIH and other federal agencies that have experienced grant freezes, staff layoffs, and other disruptions.

She’d rather return her attention to her ongoing investigations, which she’s confident could eventually save lives.

The breakdown of Brugge’s lab highlights another problem: The U.S. is kneecapping the next generation of cancer researchers. Her employees included , postdocs, and graduate students. Of the seven who left the lab in 2025, one left the U.S., one took a job at a health care management company, four went back to school, and one is still looking for work.

One of Brugge’s former staffers, Y., is a computational biologist. She helped design and run a tool that analyzes millions of breast tissue cells from the samples in the pink-lidded jars.

Y. moved to Switzerland in October to begin a PhD program. �������ýҕ�l Health News and NPR are identifying her by her middle initial because she plans to return to the U.S. for scientific conferences and worries that speaking publicly about her experience could risk future visa approvals.

“I thought the U.S. would be a safe place for scientists to learn and grow,” said Y., who moved to Boston from abroad for Harvard’s master’s degree program in bioinformatics. “I really hope that those who have the opportunities to study this further can fill in those missing pieces in cancer research.”

Brugge is no longer accepting job applicants from outside the U.S., even if they are top candidates, because she can’t afford to pay the Trump administration’s on visas for some foreign researchers.

The Association of American Universities and the U.S. Chamber of Commerce have , claiming the fee is misguided and illegal. The Trump administration said the fee would and improve opportunities for Americans.

Brugge doubts work in her lab will ever return to normal.

“There’ll always be, now, this existential threat to the research,” Brugge said. “I will definitely be concerned because we don’t know what’s going to happen in the future that might trigger a similar kind of action.”

Brugge has thought about shutting down her lab. But she still employs staff members whose future scientific careers are tied to finishing some of the research. And when she looks at those pink-lidded jars, she still sees so much promise.

This article is from a partnership that includes , , and �������ýҕ�l Health News.

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The most important reason for older adults to be vaccinated against the respiratory infection RSV is that their by almost 70% in the year they get the shot, and by nearly 60% over two years.

And the main reason to roll up a sleeve for an annual flu shot is that when people do get infected, it also reliably reduces the severity of illness, though its effectiveness varies by how well scientists have predicted which strain of influenza shows up.

But other reasons for older people to be vaccinated are emerging. They are known, in doctor-speak, as off-target benefits, meaning that the shots do good things beyond preventing the diseases they were designed to avert.

The list of off-target benefits is lengthening as “the research has accumulated and accelerated over the last 10 years,” said William Schaffner, an infectious disease specialist at Vanderbilt University Medical Center in Nashville, Tennessee.

Some of these protections have been established by years of data; others are the subjects of more recent research, and the payoff is not yet as clear. The first RSV vaccines, for example, became available only in 2023.

Still, the findings “are really very consistent,” said Stefania Maggi, a geriatrician and senior fellow at the Institute of Neuroscience at the National Research Council in Padua, Italy.

She is the lead author of , published in the British journal Age and Ageing, that found reduced risks of dementia after vaccination for an array of diseases. Given those “downstream effects,” she said, vaccines “are key tools to promote healthy aging and prevent physical and cognitive decline.”

Yet too many older adults, whose weakening immune systems and high rates of chronic illness put them at higher risk of infectious diseases, have not taken advantage of vaccination.

The last week that about 31% of older adults had not yet received a flu shot. Only about 41% of adults 75 and older had ever been vaccinated against RSV, or respiratory syncytial virus, and about a third of seniors had received the most recent covid-19 vaccine.

The CDC recommends the one-and-done pneumococcal vaccine for adults 50 and older. An analysis in the American Journal of Preventive Medicine, however, from 2022, when new guidelines were issued, through 2024, only about 12% of those 67 to 74 received it, and about 8% of those 75 and older.

The strongest evidence for off-target benefits, dating back 25 years, shows reduced cardiovascular risk following flu shots.

Healthy older adults vaccinated against flu have substantially , as well as for pneumonia and other respiratory infections. Vaccination against influenza has also been associated with and .

Moreover, many of these studies predate the more potent flu vaccines now recommended for older adults.

Could the RSV vaccine, protective against another respiratory illness, have similar cardiovascular effects? A recent large found a nearly 10% decline in cardiorespiratory hospitalizations — involving the heart and lungs — among the vaccinated versus a control group, a significant decrease.

Lowered rates of cardiovascular hospitalizations and stroke did not reach statistical significance, however. That may reflect a short follow-up period or inadequate diagnostic testing, cautioned Helen Chu, an infectious disease specialist at the University of Washington and co-author of an in JAMA.

“I don’t think RSV behaves differently from flu,” Chu said. “It’s just too early to have the information for RSV, but I think it will show the same effect, maybe even more so.”

Vaccination against still another dangerous respiratory disease, covid, has been linked to a , with its damaging effects on physical and mental health.

Probably the most provocative findings concern vaccination against shingles, aka herpes zoster. Researchers made headlines last year when they documented an association between shingles vaccination and lower rates of dementia — even with the less effective vaccine that has since been replaced by Shingrix, approved in 2017.

Nearly all studies of off-target benefits are observational, because scientists cannot ethically withhold a safe, effective vaccine from a control group whose members could then become infected with the disease.

That means such studies are subject to “healthy volunteer bias,” because vaccinated patients may also practice other healthy habits, differentiating them from those not vaccinated.

Although researchers try to control for a variety of potentially confounding differences, from age and sex to health and education, “we can only say there’s a strong association, not a cause and effect,” Maggi said.

But Stanford researchers seized on in 2013, when the first shingles vaccine, Zostavax, became available to older people who had not yet turned 80. Anyone who had was ineligible.

Over seven years, dementia rates in participants who had been eligible for vaccination declined by 20% — even though only half had actually received the vaccine — compared with those who narrowly missed the cutoff.

“There are no reasons people born one week before were different from those born a few days later,” Maggi said. Studies and have also found reductions in the odds of dementia following shingles shots.

In fact, in the meta-analysis Maggi and her team published, several other childhood and adult vaccinations appeared to have such effects. “We now know that many infections are associated with the onset of dementia, both Alzheimer’s and vascular,” she said.

In 21 studies involving more than 104 million participants in Europe, Asia, and North America, vaccination against shingles was associated with a 24% reduction in the risk of developing dementia. Flu vaccination was linked to a 13% reduction. Those vaccinated against pneumococcal disease had a 36% reduction in Alzheimer’s risk.

The Tdap vaccine against tetanus, diphtheria, and pertussis (whooping cough) is recommended for adults every 10 years, with vaccination among older adults often prompted by the birth of a grandchild, who cannot be fully vaccinated for months. It was associated with a one-third decline in dementia.

Other researchers are investigating the effects of and of .

What causes such vaccine bonuses? Most hypotheses focus on the inflammation that arises when the immune system mobilizes to fight off an infection. “You have damage to the surrounding environment” in the body, “and that takes time to calm down,” Chu said.

The effects of inflammation can far outlast the initial illness. It may allow other infections to take hold, or cause heart attacks and strokes when clots form in narrowed blood vessels. “If you prevent the infection, you prevent this other damage,” Chu said.

Hospitalization itself, during which older patients can become deconditioned or develop delirium, is a risk factor for dementia, among other health problems. Vaccines that reduce hospitalization might therefore delay or ward off cognitive decline.

Health officials in the Trump administration have assailed childhood vaccines more than adult ones, but their vocal opposition may be contributing to inadequate vaccination among older Americans, too.

Many will not only miss out on the emerging off-target benefits but will remain vulnerable to the diseases the vaccines prevent or diminish.

“The current national policy on vaccination is at best uncertain, and in instances appears anti-vaccine,” said Schaffner, a former member of the CDC’s Advisory Committee on Immunization Practices. “All of us in public health are very, very distressed.”

“The New Old Age” is produced through a partnership with .

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In 2026, the Trump administration will require U.S. cancer registries that receive federal funding to classify patients’ sex as male, female — or not stated/unknown. That last category is for when a “patient’s sex is documented as other than male or female (e.g., non-binary, transsexual), and there is no additional information about sex assigned at birth,” the new standard says.

LGBTQ+ health advocates say that move in effect erases transgender and other patients from the data. They say the data collection change is the latest move by the Trump administration that restricts health care resources for LGBTQ+ people.

�������ýҕ�l Health News correspondent Rachana Pradhan appeared on WAMU’s Health Hub on Dec. 10 to explain why LGBTQ+ health advocates worry this change could hurt public health and the care patients receive.

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Médicos y activistas por los derechos de las personas trans aseguran que esta modificación dificultará enormemente la comprensión de los diagnósticos y las tendencias del cáncer en esta población.

Algunos estudios han demostrado que entre las personas transgénero es más frecuente el consumo de tabaco y menos habitual los controles de detección del cáncer, factores que podrían aumentar su riesgo de desarrollar la enfermedad.

Investigadores del cáncer explicaron que este cambio es consecuencia de que la administración Trump solo reconoce los sexos “masculino” y “femenino”.

Los científicos opinan que la medida impactará a todos los registros de cáncer del país —en cada estado y territorio— ya que todos reciben fondos federales.

A partir de 2026, los registros financiados por los Centros para el Control y Prevención de Enfermedades (CDC) y el Instituto Nacional del Cáncer (NCI) . Y las agencias federales de salud solo recibirán datos de pacientes clasificados de esa manera.

Actualmente, los registros si el sexo de un paciente de cáncer es “hombre”, “mujer”, “otro”, ofrece diferentes opciones para “transexual”, y si el sexo no ha sido indicado o se desconoce.

En enero, el presidente Donald Trump firmó una en la que se estableció que el gobierno federal solo reconocerá los sexos masculino y femenino. Autoridades de los registros oncológicos informaron que se les ordenó modificar la manera en que recolectan los datos de pacientes con cáncer.

“En Estados Unidos, a los que estamos recibiendo fondos federales prácticamente no nos dieron otra opción”, le dijo a �������ýҕ�l Health News Eric Durbin, director del Kentucky Cancer Registry y presidente de la North American Association of Central Cancer Registries (NAACCR). Esta institución, que recibe dinero federal, establece los estándares para informar casos de cáncer a lo largo de Estados Unidos y Canadá.

Según la nueva normativa, se deberá clasificar a los pacientes como “sexo desconocido” cuando esté documentado como algo distinto a masculino o femenino (por ejemplo, no binario o transexual) y no haya información adicional sobre el sexo asignado al nacer.

Una visión incompleta

Investigadores señalaron que actualmente no se cuenta con datos poblacionales de calidad sobre la incidencia de cáncer en las personas transgénero. Si bien se estaban logrando avances importantes para mejorar esta información, ese trabajo ahora corre el riesgo de quedar en la nada.

“En lo que respecta al cáncer y las desigualdades en torno a esta enfermedad, se pueden usar los registros de cáncer para ver dónde se encuentra la mayor contaminación atmosférica, ya que las tasas de cáncer de pulmón son más altas en esas zonas. Se puede observar el impacto del almacenamiento de residuos nucleares debido a los tipos de cáncer que son más frecuentes en esos códigos postales, en esas zonas del país”, explicó Shannon Kozlovich, miembro del comité ejecutivo del California Dialogue on Cancer.

“Cuantos más sectores de la población dejemos fuera de esta base de datos, menos sabremos qué está ocurriendo”, agregó. “Y eso no significa que no esté ocurriendo”.

Durante décadas, los registros de cáncer fueron la herramienta de vigilancia más completa en el país para entender la incidencia del cáncer, las tasas de supervivencia y para identificar tendencias preocupantes.

Cada año, hospitales, laboratorios de patología y otros centros de salud notifican los casos de cáncer a registros regionales y estatales. Los datos compilados documentan las tasas de incidencia y mortalidad por región, raza, sexo y edad.

Dos programas federales son las principales fuentes de estadísticas sobre cáncer, con información sobre decenas de millones de casos. El National Program of Cancer Registries de los CDC financia organizaciones en 46 estados, el Distrito de Columbia, Puerto Rico, las Islas Vírgenes y territorios del Pacífico estadounidense. Su información representa del país.

Por su parte, el programa de Vigilancia, Epidemiología y Resultados Finales del Instituto Nacional del Cáncer, conocido como SEER, recopila y publica datos de registros que cubren del país.

La información que publican los registros de cáncer ha llevado a modificaciones en el tratamiento y en la prevención, además de impulsar otras políticas diseñadas para reducir las tasas de diagnóstico y de mortalidad.

Por ejemplo, esos datos permitieron identificar el entre personas . Como resultado, ahora las guías clínicas en Estados Unidos que los adultos comiencen los chequeos a los 45 años en vez de a los 50.

Varios estados también han aprobado sus propias medidas. Lara Anton, vocera del Departamento de Servicios de Salud de Texas, dijo que en 2018 los epidemiólogos del Registro Oncológico de Texas descubrieron que el estado tenía las tasas más altas del país de carcinoma hepatocelular, un tipo de cáncer de hígado más común en hombres que en mujeres.

A raíz de esto, el Instituto de Prevención e Investigación del Cáncer de Texas para revertir el aumento de casos. El Registro Oncológico de Texas se unió a SEER en 2021.

“Cuando se ingresa a un paciente con cáncer en un registro, lo seguimos durante el resto de su vida. Porque necesitamos saber si las personas sobreviven según el tipo y la etapa del cáncer”, señaló Durbin. “Eso es crucial para la formulación de políticas públicas”.

La NAACCR imparte los estándares nacionales que definen qué tipo de datos se deben recopilar con cada diagnóstico. Estos estándares son desarrollados junto a los CDC, el Instituto Nacional del Cáncer y otras organizaciones.

Según Durbin, los registros recopilan más de 700 datos por paciente, entre ellos información demográfica, diagnóstico, tratamiento y supervivencia. Los registros financiados por los CDC y el NCI deben especificar el sexo del paciente.

Las definiciones de NAACCR y sus estándares de datos garantizan una recolección uniforme en todo el país. “Todos seguimos esencialmente los estándares que desarrolla NAACCR”, dijo Durbin. Aunque los registros pueden agregar datos específicos a nivel estatal, deben seguir estos lineamientos cuando transfieren la información al gobierno federal.

En un comunicado enviado por correo electrónico, Andrew Nixon, vocero del Departamento de Salud y Servicios Humanos, afirmó: “HHS está utilizando la ciencia biológica para guiar sus políticas, no agendas ideológicas como lo hizo la administración Biden”.

Un retroceso

NAACCR publica periódicamente actualizaciones de sus lineamientos. Pero, según Kozlovich, el cambio en la categoría de “sexo” que eliminará las opciones transgénero a partir de 2026 fue una decisión de emergencia provocada por las políticas de la administración Trump.

Kozlovich formó parte de un grupo que impulsó la inclusión de datos sobre sexo y género como variables distintas en la recolección de información oncológica.

Según un realizado por el Williams Institute de la UCLA School of Law en Los Ángeles (UCLA), 2,8 millones de personas mayores de 13 años se identifican como transgénero en el país.

Científicos y defensores de los derechos de las personas trans manifestaron en entrevistas que hay señales preocupantes de que esta población podría tener mayor riesgo de desarrollar cáncer o enfrentar peores condiciones de salud en comparación con otras.

“Sin evidencia sobre nuestras desigualdades en salud, no hay ningún incentivo para corregirlas”, afirmó Scout, director ejecutivo de la LGBTQIA+ Cancer Network.

Un estudio publicado en 2022 concluyó que las personas transgénero y de género diverso eran entre más propensas que las personas cisgénero a consumir cigarrillos, cigarrillos electrónicos o habanos. El consumo de tabaco es una de las principales causas de cáncer y de muerte por cáncer.

Un publicado en 2019 concluyó que los pacientes trans tenían menos probabilidades de recibir los controles recomendados para detectar cáncer de mama, de cuello uterino y colorrectal. Y un realizado por investigadores de la Stanford Medicine encontró que los pacientes LGBTQ+ tenían casi tres veces más probabilidades de experimentar una recurrencia del cáncer de mama en comparación con personas cisgénero heterosexuales.

Scarlett Lin Gomez, epidemióloga de la Universidad de California-San Francisco y directora del Greater Bay Area Cancer Registry explicó que desde hace al menos 10 años el Instituto Nacional del Cáncer ha buscado mejorar su capacidad para monitorear la carga de cáncer en poblaciones con diferentes orientaciones sexuales e identidades de género. Los registros oncológicos son un punto de partida lógico, explicó.

“Se había avanzado lenta pero correctamente”, señaló Gómez. “Pero ahora, desde mi punto de vista, hemos retrocedido completamente”.

La decisión de no recopilar información sobre la identidad trans de los pacientes con cáncer es solo uno de los muchos cambios que han enfrentado los registros bajo la administración Trump, según científicos encargados de tareas de vigilancia y agencias estatales de salud.

Una orden del HHS para reducir gastos en contratos provocó recortes en el financiamiento a registros del programa SEER del NCI. Aunque los fondos de los CDC para registros no se han reducido, el presupuesto que propuso la Casa Blanca para el año fiscal 2026 plantea eliminar el financiamiento del National Program of Cancer Registries.

Otras acciones de la administración Trump contra personas trans incluyen la cancelación de subvenciones para investigaciones sobre salud LGBTQ+, el desmantelamiento de la oficina de salud para minorías sexuales y de género de los Institutos Nacionales de Salud, y la suspensión de servicios especializados para jóvenes LGBTQ+ en la línea nacional de prevención del suicidio 988.

Sin datos, los investigadores no pueden justificar el financiamiento de investigaciones que puedan beneficiar a pacientes trans, lamentó Gomez. “Es una forma de borrar su existencia”.

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