Medical News

Robert F. Kennedy Jr.’s anti-vaccine activism is not what you’d call subtle. For decades, he has questioned the safety and effectiveness of various childhood vaccines, insisting that some of them cause autism, lying about their ingredients, and dismissing troves of evidence that counter his views. However much he might deny it, Kennedy is “an old-school anti-vaxxer,” Dorit Reiss, an expert in vaccine law at UC Law San Francisco, told me.

When he became the United States’ health secretary, Kennedy brought few of his staunchest and oldest allies in the anti-vaccine movement with him. Instead, the Department of Health and Human Services is filling with political appointees whose views of vaccines run less obviously counter to evidence than Kennedy’s. But these officials, too, question the safety and usefulness of at least some vaccines, and seek to slow or stop their use.

Among those officials are Marty Makary, the new FDA commissioner, and Tracy Beth Høeg, his new special assistant; Vinay Prasad, the new director of the FDA center that oversees the regulation of vaccines; and Jay Bhattacharya, the new director of the National Institutes of Health. Unlike Kennedy, they hold advanced degrees in science, medicine, or public health, and have published scientific papers—often in direct collaboration with one another. And they have each endorsed at least some vaccines for children, or even pushed back on some of Kennedy’s most flagrant vaccine misinformation—criticizing, for instance, his false claims that MMR shots cause autism. When reached for comment by email, Emily Hilliard, HHS’s deputy press secretary, described the cohort to me as “credentialed physicians and researchers with long-standing commitments to evidence-based medicine” who “were brought into HHS to restore scientific rigor, transparency, and public trust—not to blindly affirm the status quo.” (Emails to the FDA and the NIH requesting interviews with each of these four officials either went unanswered or redirected me to HHS.)

These new appointees can also be described, more succinctly, as a COVID contrarian who has questioned the worth of vaccines. Their approach to immunization policy is less extreme, more engaged with evidence, and more academic than Kennedy’s. And precisely because these officials’ perspectives carry a sheen of legitimacy that most of the secretary’s usual allies lack, they could be more effective than Kennedy at undermining America’s protections against disease.

In sharp contrast to Kennedy, this new cohort—you could call them the neo-anti-vaxxers—are generally established in their respective scientific fields. Makary, for instance, has been hailed for pioneering several surgical procedures; in the 2010s, Prasad, a hematologist-oncologist, gained recognition for his rigorous—albeit acerbic—takes on precision medicine and cancer drugs. And each has acknowledged, in at least some capacity, the lifesaving powers of immunization. When they’ve argued about vaccines, they’ve often done so in respected scientific venues, and performed their own analyses of the evidence.

No medical intervention is without risk, and on the broadest level, what these officials are asking for appears to fit the essential tenets of public health: thorough testing of vaccines before they’re debuted, and careful scrutiny of each immunization’s relative pros and cons. But these officials’ past actions show that they haven’t always weighed those scales fairly or objectively.

All four of these officials began to publicly coalesce in their view of vaccination in the early months of COVID. None of them had trained as infectious-disease specialists or vaccinologists. But in their public comments, and in several publications, they contended that the virus was far less dangerous than most public-health officials thought, and that the measures that the U.S. was taking against it were far too extreme. They argued against mandates and boosters, especially for children and for young and healthy adults; they exaggerated the side effects of the shots, extolled the benefits of acquiring immunity through infection, and dismissed the notion that people who’d already had COVID should still get shots later on. In October 2020, Bhattacharya and a group of colleagues advocated for reopening society before vaccines had debuted; Makary, although initially supportive of COVID vaccines, went on to praise the Omicron variant of the virus—which at one point killed an average of 2,200 Americans each day—as “nature’s vaccine.” Prasad, meanwhile, has said that COVID-vaccine makers should be sued for the rare side effects caught and disclosed with standard monitoring. And Høeg, who’d previously worked with Florida Surgeon General Joseph Ladapo, influenced his decision to recommend against the COVID vaccine for healthy children.

Plenty of Americans were reasonably nervous about taking a vaccine developed at record speed, with new technology, under conditions of crisis. But Bhattacharya, Makary, Prasad, and Høeg went further than simply recommending caution; they questioned the legitimacy of the data supporting repeat immunization and at times actively advised against it.

Their criticism of vaccination has transcended COVID. Prasad allows that some vaccines are important but has also questioned the value of RSV vaccines during pregnancy; he’s argued that the evidence for annual flu shots is “extremely poor,” and disparaged doctors who consider all vaccines lifesaving. He has suggested that Kennedy randomize different parts of the U.S. to different childhood vaccine schedules, to determine an optimal dosing strategy—an experiment that could keep kids from accessing safe and effective shots in a timely fashion. Høeg, too, has called for an overhaul of how vaccines are tested, approved, and regulated in this country. And she has sharply criticized the American pediatric immunization schedule for including more vaccines than the one in Denmark, where she holds citizenship. Makary, while more tempered in his public comments, has still declined at times to urge parents to vaccinate their children against measles, and downplayed the virus’s risks.

As a group, these officials have generally been more sanguine about Kennedy’s false claims about vaccines and autism than other researchers have. Bhattacharya, for example, said at his confirmation hearing that he is convinced that vaccines don’t cause autism, but added that he wouldn’t reject more studies on the issue.

Hilliard, at HHS, wrote that, by interrogating vaccines, these officials are doing only what science requires: “Questioning the quality of data, highlighting the limits of past decisions, or advocating for better trials is not anti-science—it is the gold standard of science.” But truly rigorous science also rests on the foundations of previous data—and a willingness to accept those data, even if they conflict with one’s priors. Many of the questions these officials are asking have already been repeatedly asked and answered—and the four of them have been criticized by public-health experts for their tendency to, like Kennedy, ignore reams of evidence that do not support their views. Some of their suggestions for revamping vaccines would also put Americans at unnecessary risk: Asking certain American jurisdictions to delay childhood vaccinations, or perhaps even skip certain shots, could leave entire communities more vulnerable to disease.

Fundamentally, they, like Kennedy, believe that vaccines should generally be more optional for more Americans—a perspective that elides the population-level benefits of widespread immunity against disease. And fundamentally, they, like Kennedy, have argued that vaccines that have passed rigorous tests of safety and efficacy, been successfully administered to hundreds of millions of people, and saved lives around the world are not safe or necessary. If those stances are further codified into policy, they could waste the country’s resources on unnecessary testing, produce misleading data, and erode confidence in public health as a whole.

Already, these officials have turned their new powers on COVID vaccines, some of which are still authorized only for emergency use. The FDA has delayed full approval of the Novavax COVID vaccine and is reportedly asking for a new—and very costly and laborious—randomized controlled trial on the shot’s effectiveness, even though the shot has already been through those sorts of studies and been safely administered to people for years. The agency could also require all COVID-vaccine makers to submit new effectiveness data for shots updated to include new variants of the virus—essentially treating them as brand-new vaccines and potentially making it nearly impossible, logistically, to produce new formulations of the COVID vaccine each fall. (Experts worry that the agency will apply the same logic to flu vaccines, with the same result.) The FDA could also go as far as revoking emergency-use authorizations, such as the one for pediatric COVID vaccines, which Prasad has said should be stricken from the childhood immunization schedule.

These officials’ powers have limits: The CDC (which still doesn’t have a permanent director), not the FDA, recommends the childhood immunization schedule. At a meeting last month of the CDC’s advisory council on immunization practices, though, Høeg came as the FDA’s liaison—an unconventional choice, Jason Schwartz, a vaccine-policy expert at Yale, told me, for a role historically filled by a career scientist from the Center for Biologics Evaluation and Research, the FDA center Prasad runs. (After deferring to HHS, the FDA responded to a request for comment by pointing out that Høeg holds the title of “senior clinical science adviser” at CBER—a title she was apparently given after the meeting.) Grace Lee, who previously chaired the committee, told me that the FDA liaison is “not usually an active participant.” And yet, Høeg pointedly questioned the safety and effectiveness of multiple vaccines, including COVID shots—the sort of contribution that could influence the discussion, the ultimate vote, and, potentially, the eventual CDC director’s decision to accept the panel’s advice, Lee and Schwartz said.

Bhattacharya’s sway, too, is likely to expand far past his own agency. Under this administration, the NIH has already canceled grants for hundreds of infectious-disease-focused studies, including dozens that look at vaccine uptake and hesitancy. Now, with Bhattacharya in charge, the agency is leading a $50 million study into the causes of autism, as directed by Kennedy—who already seems set on the answers to that question. When asked in a recent interview with Politico whether mRNA-focused science might be defunded, Bhattacharya said that “many, many people now think that mRNA is a bad platform.” If the U.S. ignores vaccine hesitancy—or if researchers have fewer resources to develop new vaccines—immunization in this country will stall, regardless of who runs the FDA or the CDC.  

Modern American politics does still consider some positions to be too anti-vaccine: Trump’s original pick for CDC director, Dave Weldon, who has repeatedly promoted the debunked idea of a connection between vaccines and autism, had his nomination withdrawn by the White House in March. Kennedy’s own confirmation hearing was contentious, and heavily focused on vaccines; in official press statements and in interviews since then, he has softened some of his stances—acknowledging the protective powers of the MMR shot, for instance—to the point where he has angered his extremist base. Bhattacharya and Makary faced less resistance during their own hearings, during which they both praised the importance of vaccines. The vaccine distortions they’ve pushed are less blatant than Kennedy’s, but also more difficult to combat.

When Kennedy began his new position, some feared he would immediately take a sledgehammer to American vaccines. The moves he and his new team are making have stopped short of obliterating access to shots; they’re more about creating new roadblocks, Luciana Borio, a former acting chief scientist at the FDA, told me. But even seemingly minor hurdles can mark a substantial philosophical shift: Where HHS once treated the U.S.’s vaccines as well-vetted, lifesaving technologies, it’s now casting them as dubious tools with a murky track record, pushed onto the public by companies rife with corruption. By sowing doubt that vaccines can safely protect people, HHS’s lesser skeptics will help legitimize Kennedy—until all of their views, fringe as they may have begun, start to feel entirely reasonable.

Photographs by Sarah Blesener

The Toyota pickup hit the tree that May morning with enough explosive force to leave a gash that is still visible on its trunk 39 years later. Inside the truck, the bodies of three teenage boys hurled forward, each with terrible velocity.

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One boy died instantly; a second was found alive outside the car. The third boy, Ian Berg, remained pinned in the driver’s seat, a bruise blooming on the right side of his forehead. He had smacked it hard—much harder than one might have guessed from the bruise alone—which caused the soft mass of his brain to slam against the rigid confines of his skull. Where brain met bone, brain gave way. The matter of his mind stretched and twisted, tore and burst.

When the jaws of life freed him from the wreckage, Ian was still alive, but unconscious. “Please don’t die. Please don’t die. Please don’t die,” his mother, Eve Baer, pleaded over him at the hospital. She imagined throwing a golden lasso around his foot to keep him from floating away.

And Ian didn’t die. After 17 days in a coma, he finally opened his eyes, but they flicked wildly around the room, unable to sync or track. He could not speak. He could not control his limbs. The severe brain injury he’d suffered, doctors said, had put him in a vegetative state. He was alive, but assumed to be cognitively gone—devoid of thought, of feeling, of consciousness.

Eve hated that term, vegetative—an “unhuman-type classification,” she thought. If you had asked her then, in 1986, she would have said she expected her 17-year-old son to fully recover. Ian had been handsome, popular, in love with a new girlfriend—the kind of golden boy upon whom fortune smiles. At school, he was known as the kid who greeted everyone, teachers included, with a hug. He and his two friends in the car belonged to a tight-knit group of seniors. But on the day he would have graduated that June, Ian was still lying in a hospital bed, his big achievement being that he’d finally made a bowel movement.

“What kind of life is that?” Ian’s brother Geoff remembers thinking. When he first arrived at the hospital, he had looked around the room for a plug to pull. The two brothers had talked about scenarios like this before, Geoff told me: “If anything ever happens to me and I can’t wipe my ass, make sure you kill me.” Angry that their mother was keeping his brother alive, Geoff fled, moving for a time to St. Thomas.

Three months after the accident, when doctors at the hospital could do no more for Ian, Eve took him home. She was adamant that he live with family, rather than under the impersonal care of a nursing home. That she had ample space for Ian and all of his specialized equipment was fortuitous. A few weeks before the accident, Eve’s husband, Marshall, had stumbled upon the Rainbow Lodge, an old hotel for hunters and fishers, for sale near Woodstock, New York. He loved the idea of a compound for their big blended family—his two grown children plus nieces and nephews, as well as Eve’s four kids, of whom Ian is the youngest. The sale was finalized while Ian was in the hospital.

At the lodge, Eve and a rotating cast of caretakers kept Ian alive: bathing him, pureeing home-cooked meals for his feeding tube, changing the urine bag that drained his catheter. She also devised a busy schedule of therapies, anchored by up to six hours a day of psychomotor “patterning”—an exercise program she’d read about in which a team of volunteers took each of Ian’s limbs and moved them in a pattern that mimicked an infant learning to crawl. Friends and acquaintances came to help with patterning; some started living in the lodge’s guest rooms, staying for months or even years. They formed a kind of unconventional extended family, with Ian at the center. Every Sunday, Eve cooked big dinners for the crowd.

The patterning exercises, which are not based on science, ultimately did not really help Ian. But his mother didn’t dwell on this. She made regular calls to the National Institutes of Health to inquire about the latest brain-injury research. And where mainstream medicine failed, Eve—who had moved to Woodstock in the ’60s as a “wannabe bohemian slash beatnik”—turned enthusiastically to alternatives. Ian was treated by the spiritual guru Ram Dass; a “magic man” with a pendulum; a craniosacral therapist; a Buddhist monk; Filipino “psychic surgeons”; and a healer in Chandigarh, India. Eve and Marshall took him on the 7,000-mile journey to India themselves, pushing him in a rented collapsible wheelchair. When, after all of this, Ian’s condition still did not improve, Eve became angry. It was one of the rare times that she allowed disappointment to puncture her relentless optimism.

Still, like so many other family members of vegetative patients, she held on to a mother’s belief that Ian could understand everything around him. She took care, when shaving him, to leave the wispy mustache he had been trying to grow. When his high-school friends went to see the Grateful Dead, she brought him along in his wheelchair and a tie-dyed shirt. She kept believing for herself as much as for Ian: If her son was aware, it would mean her gestures of love were not unseen, her words not unheard.

Science would take decades to catch up with Eve, but she turned out to be right in one crucial respect: Ian is still aware. Doctors now agree that he can see, he can hear, and he can understand, at least in some ways, the people around him.

Over the past 20 years, the science of consciousness has undergone a reckoning as researchers have used new tools to peer inside the brains of people once thought to lack any cognitive function. Ian is part of a landmark study published in The New England Journal of Medicine last year, which found that 25 percent of unresponsive brain-injury patients show signs of awareness, based on their brain activity. The finding suggests that there could be tens of thousands of people like Ian in the United States—many in nursing homes where caretakers might have no clue that their patients silently understand and think and feel. These patients live in a profound isolation, their conscious minds trapped inside unresponsive bodies. Doctors are just beginning to grasp what it might take to help them.

For Ian, the signs were there, if not right at the beginning, at least early on. Three years after the accident, he began to laugh.

Eve was in the kitchen with him, idly singing the Jeopardy theme song in a silly falsetto when she heard it: “Ha!” Laughter? Laughter! “Other than a cough, it was the first sound I heard from him in three years,” she told me. In time, Ian started laughing at other things too: stories Eve made up about a cantankerous Russian named Boris, the word debris, pots clanging, keys jangling. Fart and poop jokes were a perennial favorite; his brain seemed to have preserved a 17-year-old’s sense of humor. His friends and family took that to mean the Ian they knew was still in there. What else might he be thinking?

At the time, Ian was not regularly seeing a neurologist. But even if he had been, most neurologists in the ’80s would not have known what to make of his laughter; it flew in the face of conventional wisdom.

Doctors first defined the condition of the persistent vegetative state in 1972, less than a decade and a half before Ian’s accident. Fred Plum and Bryan Jennett coined the term to describe a perplexing new class of patients—people who, thanks to advances in medical care, were surviving brain injuries that used to be fatal, but were still left stranded somewhere short of consciousness. This condition is distinct from coma, a temporary state in which the eyes are closed. Vegetative patients are awake; their eyes are open, and they may be neither silent nor still. They can moan and move their limbs, just without purpose or control. And while their bodies continue to breathe, sleep, wake, and digest, they seem to have no connection to the outside world. Today, experts sometimes refer to the vegetative state as “unresponsive wakefulness syndrome.”

Back then, the two doctors also distinguished it from locked-in syndrome, which Plum had helped name a few years prior. Locked-in patients are fully conscious though immobile, except for typically their eyes. (Jean-Dominique Bauby wrote his famous 1997 memoir about locked-in syndrome, The Diving Bell and the Butterfly, by blinking out one letter at a time.) In contrast, Plum and Jennett considered the vegetative state “mindless,” with no cognitive function intact.

What, then, could the laughter mean? By the ’90s, some of the most prominent experts on consciousness—including Plum and Jennett themselves—had begun to realize that they had perhaps too categorically or hastily dismissed patients diagnosed as vegetative. Researchers were documenting flickers of potential consciousness in some supposedly vegetative patients. These patients could utter occasional words, grasp for an object every now and then, or seem to answer the odd question with a gesture—suggesting that they were at least sometimes aware of their surroundings. They seemed to be neither vegetative nor fully conscious, but fluctuating on a continuum.

This in-between space became formally recognized in 2002 as the “minimally conscious state,” in an effort led by Joseph Giacino, a neuropsychologist who specializes in rehabilitation after brain injury. (Coma, vegetative, and minimally conscious are sometimes collectively called “disorders of consciousness.”)

One day in spring 2007, Marshall, Ian’s stepfather, slipped on a mossy stone and fractured his hip. As he and Eve waited for an ambulance, the phone rang. Giacino had heard about Eve’s NIH inquiries, and he was interested in meeting Ian—he wondered if the minimally conscious diagnosis might apply to him. If so, Ian could qualify for a new experimental trial.

Giacino didn’t make any promises. Still, after all those years, Eve told me, “he was the first voice of positive possibility that I heard.” So even as Marshall lay next to her with his broken hip, neither of them dared hang up the phone.

Around this time, in 2006, an astonishing case report came out from researchers led by Adrian Owen, a cognitive neuroscientist at the University of Cambridge; it suggested that even vegetative patients could retain some awareness. Owen found a 23-year-old woman who had been in a car accident. Months later, she still had no response on behavioral exams. But in an fMRI machine, her brain looked surprisingly active: When she was asked to imagine playing tennis, blood flowed to her brain’s supplementary motor area, a region that helps coordinate movement. When she was asked to imagine visiting the rooms of her house, blood flowed to different parts of her brain, including the parahippocampal gyrus, a strip of cortex crucial for spatial navigation. And when she was told to rest, these patterns of brain activity ceased. Based on the limited window of an fMRI scan, at least, she seemed to understand everything she was being asked to do.

“Unsettling and disturbing” is how one neurologist described the implications of the study to me. Also: controversial. Another doctor recounted a scientific meeting soon after where the speakers were split 50–50 on whether to accept the results. Was the fMRI finding just a fluke? Owen did not inform the woman’s family of what he found, because the study’s ethical protocol was ambiguous about how much information he could share. He wishes he could have. The woman died in 2011, without her family ever being told that she might have been aware.

[Read: I know the secret to the quiet mind. I wish I’d never learned it.]

Over time, Owen and his group identified more patients with what they came to call “covert awareness.” Some were vegetative, while others were considered minimally conscious, based on behaviors such as eye tracking and command following. The researchers found that outward response and inner awareness were not always correlated: The most physically responsive patients were not necessarily the ones with the clearest signs of brain activity when asked to imagine the tasks. Covert awareness, then, can be detected only using tools that peer at a brain’s inner workings, such as fMRI.

In 2010, one of Owen’s collaborators, the Belgian neurologist Steven Laureys, asked a minimally conscious patient, a 22-year-old man, a series of five yes-or-no questions while he was in an fMRI machine, covering topics such as his father’s name and the last vacation he took prior to his motorcycle accident. To answer yes, the patient would imagine playing tennis for 30 seconds; to answer no, he would imagine walking through his house. The researchers ran through the questions only once, but he got them all right, the appropriate region of his brain lighting up each time.

It is hard to say what experience of human consciousness some colored pixels on a brain scan really depict. To answer intentionally, the patient would have had to understand language. He would also have needed to store the questions in his working memory and retrieve the answers from his long-term memory. In my conversations with neurologists, this was the study they cited again and again as the most compelling evidence of covert awareness.

A few years later, using the same yes-or-no method, Owen found a vegetative patient who seemed to know about his niece, born after his brain injury. To Owen, this suggested that the man was laying down new memories, that life was not simply passing him by. In yet another case, Owen used fMRI not just to quiz a 38-year-old vegetative man, but to actually ask about the quality of his life 12 years post-injury: Was he in pain right now? No. Did he still enjoy watching hockey on TV, as he had before his accident? Yes.

Most researchers I spoke with were reluctant to speculate about the inner life of these brain-injury patients, because the answer lies beyond any known science. The brains of minimally conscious patients do activate in response to pain or music, Laureys told me, but their experience of pain or music is likely different from yours or mine. Their state of consciousness may resemble the twilight zone of drifting in and out of sleep; it almost certainly differs from person to person. Owen believes that some of his vegetative patients may actually be “completely conscious,” akin to a locked-in person who is fully aware, but cannot move even their eyes. Until that is proved otherwise, he sees no reason not to extend them the benefit of the doubt.

Several months after the phone call from Giacino’s office, Ian’s family made the trip to New Jersey to meet the researcher. In the exam room, Giacino put Ian through an intense battery of tests. He found that Ian could intermittently reach on command for a red ball. He laughed at loud noises, such as keys jangling, which Giacino said could be a simple response to the sound. But Ian also laughed appropriately at jokes, especially adolescent ones, as if he understood humor and intent. These behaviors were enough to qualify Ian for a brand-new diagnosis two decades after his accident: not vegetative, but minimally conscious.

Giacino’s collaborators were eager to put Ian in an fMRI machine, to see what might be happening inside his brain. On a separate trip, this time to an fMRI facility in New York City, his family met Nicholas Schiff, a neurologist at Weill Cornell and a protégé of Fred Plum’s. Schiff, too, was intrigued by Ian’s laughter, and the possibility that he understood more than he could physically let on. Schiff’s team showed Ian pictures and played voices—to see whether his brain could process faces and speech—and asked him to imagine tasks such as walking around his house.

Ian’s brother Geoff was also at this scan, having by then returned to New York. Crammed into the small fMRI control room with all the scientists peering at Ian’s brain, he remembers being incredulous at the things they wanted his brother to imagine. “You really think he can understand you?” he asked.

The scientists did. They believed Ian still retained some kind of consciousness. They also thought there was a chance, with luck and the right tools, of unlocking more. This had happened before. In some extraordinary patients, the line between conscious and unconscious is more permeable than one might expect.

In 2003, Terry Wallis, in Arkansas, suddenly uttered “Mom!” after 19 years as a vegetative patient in a nursing home. Then he said “Pepsi”—his favorite soft drink. After that, his mother took him home. Wallis couldn’t move below his neck and he struggled with his memory and impulse control, but he began to speak in short sentences, recognized his family, and continued to request Pepsis. In retrospect, he probably had not been vegetative at all, but minimally conscious during those first 19 years. His mom had seen signs that others at the nursing home had not: Wallis occasionally tracked objects with his eyes, and he became agitated after witnessing the death of his roommate with dementia.

[Read: How people with dementia make sense of the world]

Slowly, over time, Wallis’s brain had recovered to the point of regaining speech. When Schiff and his colleagues later scanned him, they found changes that suggested neuronal connections were being formed and pruned decades after his injury. “Terry changed what we thought about what might be possible,” Schiff told Ian’s family.

There was also Louis Viljoen, in South Africa, who in 1999 began speaking when put on zolpidem, better known as Ambien, a sedative that was, ironically, supposed to put him to sleep. He, too, had been declared vegetative—a “cabbage,” according to one doctor—after being hit by a truck. Within 25 minutes of taking zolpidem, his mother recalled, he started making his first sounds, and when she spoke, he responded, “Hello, Mummy.” Then the effects of the drug faded as rapidly as they’d come on.

Viljoen would continue taking zolpidem every day; he eventually recovered enough to be conscious even without the drug, but a daily dose reanimated him further. “After nine minutes the grey pallor disappears and his face flushes. He starts smiling and laughing. After 10 minutes he begins asking questions,” a reporter who met him in 2006 wrote. Several other drugs, including amantadine and apomorphine, can have similarly arousing effects, though none has worked in more than a tiny sliver of patients. In certain people, for reasons still not understood, they might activate a damaged brain just enough to kick it into gear, “like catching a ride on a wave,” Schiff, who has studied patients on Ambien, told me.

Greg Pearson, in New Jersey, had electrodes implanted in his thalamus in 2005 as part of a study by Schiff and Giacino. The thalamus is a walnut-size region of the brain that sits above the opening at the bottom of the skull, where the spinal cord meets the brain, a position that makes it particularly vulnerable during injury: When a bruised brain swells, it has nowhere to go but down, putting tremendous pressure on the thalamus. Because the thalamus usually regulates arousal—Schiff likens it to a pacemaker for the brain—damage to this region can induce disorders of consciousness. Schiff wondered if stimulating the thalamus could restore some of its function. And indeed, when the electrodes were turned on during surgery, Pearson blurted out his first word in many years: “Yup.” He was eventually able to recite the first 16 words of the Pledge of Allegiance and tell his mother, “I love you.”

A damaged brain, in some cases, might be more like a flickering lamp with faulty wiring than a lamp that has had its wiring ripped out. If so, that circuitry can be manipulated. The neurosurgeon Wilder Penfield realized this decades ago, when he discovered that he could make a conscious patient fall unconscious by gently pressing on a certain area of the brain.

That our consciousness might actually be dynamic, that it can be dialed up and down, is not so strange if you consider what happens every day. We become unconscious when we sleep at night, only to reanimate the next day. Could this dialing back up be artificially controlled when the brain is too damaged to do so itself?

After the publication of the study on Pearson, in 2007, Schiff couldn’t keep up with all the calls to his office. He and his colleagues were now looking for more patients, including people who were even less responsive initially than Pearson—people whose condition would test the extent of what deep-brain stimulation using electrodes could do.

Given his limited but still discernible responses, Ian seemed like the perfect candidate. The researchers were careful not to make guarantees. But Eve harbored hope that Ian could one day tell her, “I love you.” His family agreed to join the trial.

I’ll cut to the chase: Ian’s deep-brain stimulation did not work. At one point during the surgery to implant the electrodes, he said the only intelligible word he’s uttered since 1986—“Down,” in response to being asked, “What is the opposite of up?” Then he lapsed into silence once again. In the months that followed, therapists spent hours and hours asking Ian to move his arm or respond to questions, to no avail.

Geoff, who worked in video production at the time, captured the process on film. He had intended to make a documentary about what he hoped would be his brother’s recovery. In addition to filming Ian in the trial, he’d taped interviews with family members, asking what hearing Ian speak again would mean to them.

He never did make the documentary. Without a miraculous recovery, he felt, the story was just too sad. This past winter, Geoff dug up the old camcorder tapes, and we watched the footage together on the living-room TV. He hadn’t seen it since he filmed it nearly 20 years ago. “Tough to watch,” he said more than once.

After Ian went home, life at the Rainbow Lodge went on largely as it had before. Something did change, though—specifically for Geoff. Knowing that scientists now believed Ian retained some awareness transformed how he related to his younger brother. He started spending more time with Ian, and the two regained a brotherly intimacy. “Ian, are you conscious or are you a vegetable?” Geoff teased during one of my visits. “I think you’re a vegetable. I think you look like a kumquat.”

Geoff eventually took on more and more of Ian’s care; he is now paid through Medicaid as a part-time caregiver, helping Eve, who is 86. Geoff is the one who puts Ian to bed every evening, smoothing out the sheets to make sure he does not lie on a wrinkle all night long. He tucks an extra pillow on Ian’s left side, as his head has a tendency to droop that way.

For Eve, caregiving came naturally; she told me her ambition in life was always to be a mother. She had married at 18 and had three children in quick succession. When their marriage became strained, she and her first husband decided to try an open relationship. In 1964, Eve got a job waitressing at a Woodstock café whose owners let a singer named Bob Dylan live upstairs. She flirted with men. She flirted with Dylan, who took her to play pool and showed her pages of his book in progress, Tarantula. (“Bob was much cuter,” she says of Timothée Chalamet, who starred in the recent Dylan biopic.) Eventually she got divorced; her second husband was Ian’s father. Her third, Marshall, was an artist with a successful marketing career in New York City. Eve and Marshall planned to spend more time there after Ian graduated. The car crash upended everything.

Afterward, Eve threw herself back into the role of devoted mother. (Marshall helped take care of Ian until his death in 2011.) Even now, with Geoff and two nurses who cover five days a week, Eve has certain tasks she insists on carrying out herself. She trims Ian’s nails and hair, now thinning on top to reveal the faint scars from his deep-brain-stimulation surgery. She shaves him. When she speaks to her son, she leans over close, their matching Roman noses almost touching. In these moments, Ian will vocalize—“Aaaaaahh ahhhhhh”—like he is trying to talk with his mother.

“I think Ian lived for my mom,” Geoff told me at one point, thinking back to the hospital, where Eve pleaded over his unconscious body, holding on to Ian with her imagined golden lasso. She had promised Ian then that she would do anything for him if he lived—hence the healers, the studies, and her devotion to him for the past 39 years.

While Ian was recovering from the deep-brain-stimulation surgery, Eve came across a poem by E. E. Cummings that affected her so deeply, she took to reading it aloud to him in a morning ritual. The second stanza goes:

(i who have died am alive again today,
and this is the sun’s birthday;this is the birth
day of life and of love and wings:and of the gay
great happening illimitably earth)

Schiff kept probing the outer limits of consciousness in patients with severe brain injuries. Last year, he, along with Owen, Laureys, and other researchers in the field, published the largest and most comprehensive study yet of covert awareness. This is the New England Journal of Medicine study that included Ian, and found one in four vegetative or minimally conscious brain-injury patients to have covert awareness. (Schiff prefers the term cognitive motor disassociation, to highlight the disconnect between the patients’ mental and physical abilities.) “Our experience was Wow, it’s not so hard to find these people,” Schiff told me.

The researchers do not believe that everyone with a disorder of consciousness is somehow cognitively intact—a majority are probably not, according to this study. The most important takeaway, researchers say, is simply this: People with covert awareness exist, and they are not exceedingly rare.

[From the June 2015 issue: Hacking the brain]

These findings raise profound questions about our ethical obligation to people with severe brain injuries. In his 2015 book, Rights Come to Mind, Joseph Fins, a medical ethicist at Cornell who frequently collaborates with Schiff, argues that such patients deserve better than to be “cast aside by an indifferent health care system,” or left to languish as mere bodies to feed and clean. “For so long, I’d been stripped of any identity,” one brain-injury patient, Julia Tavalaro, wrote in her memoir, Look Up for Yes. “I had begun to think of myself as less than an animal.” She was able to write the book after a particularly observant speech therapist finally noticed, six years after her injury, that she could communicate with her eyes. But too often, Fins told me, patients are shunted into long-term-care homes that cannot provide the attention and rehab that could uncover subtle signs of consciousness.

These patients are also especially vulnerable to abuse. In 2019, staff at a facility in Phoenix called 911 in a panic after a patient—who was reportedly vegetative but may have been minimally conscious—unexpectedly gave birth. No one at the facility, where she had lived for years, even knew she was pregnant until a nurse saw the baby’s head. She had been raped by a male nurse.

In some cases, patients with covert awareness may never make it to long-term care—they simply die when life support is withdrawn at the hospital. “If you went back 15, 20 years, there was a tremendous amount of nihilism” among doctors, says Kevin Sheth, a neurologist at Yale. Even as medicine has become less fatalistic about brain injury, hospitals still rarely look for covert awareness using fMRI. ICU patients may be too fragile to be moved to an fMRI machine, and the technology is too cumbersome and expensive to bring into the ICU.

Varina Boerwinkle, a neurocritical-care specialist now at the University of North Carolina, believes the technology should be routinely used with brain-injury patients. She told me about a 6-year-old boy she treated at a previous job in 2021, who had been in a car crash. Her initial impression was that he would not survive, and his first fMRI scan showed no signs of awareness. Boerwinkle began to wonder if doctors were prolonging his suffering. But the team repeated the test on day 10, in anticipation of discussing withdrawal of care with the boy’s parents. To Boerwinkle’s astonishment, his brain was now active: He could respond when asked to perform specific mental tasks in the fMRI.

At first, Boerwinkle wasn’t sure what to say to the boy’s family about the fMRI. Though it implied that he still had cognitive function, it did not guarantee that he would ever recover enough to respond physically or verbally. Her colleagues have seen families struggle to care for a child with a severe brain injury, Boerwinkle told me, and everyone was wary of providing false hope.

The doctors ultimately did inform the boy’s parents about their findings; his mother told me the fMRI gave them the confidence to agree to another surgery. It worked. Four years later, the boy is back in school. He uses an eye-gaze device to communicate and zoom around in his wheelchair, and his reading and math skills are on par with those of other kids his age.

Scientists are now looking for simpler tools to test for covert awareness. Patients who show signs of awareness early on, it seems, tend to have better recoveries than those who don’t. Owen, now based at the University of Western Ontario, recently published a study using functional near-infrared spectroscopy, which shines a light through the skull. A group at Columbia University, led by Jan Claassen, is experimenting with EEG electrodes that sit on the head.

But even after 20 years of research, little has changed in terms of what doctors can do to help patients found to have covert awareness long after their injury—which is still, in most cases, nothing. On his office wall, Schiff has taped the brain scans of five patients to remind him of the human stakes of his work. He is now exploring brain implants, which are already helping certain paralyzed patients control cursors with their mind or speak via a computer-generated voice. The next several years could prove crucial, as a crop of well-funded companies tests new ways of interfacing with the brain: Elon Musk’s Neuralink, perhaps the best-known of these, uses filaments implanted by a sewing-machine-like robot; Precision Neuroscience’s thin film floats atop the cortex; and Synchron’s implant is threaded up to the brain through the jugular vein.

Getting any of these implants to work in people with severe injuries like Ian’s will be particularly challenging. Ian’s age and the electrodes already implanted in his brain also make him an unlikely early candidate. This technology—if it ever works for people like him—may arrive too late for Ian.

Even in 1972, when Plum and Jennett first described the vegetative state, the doctors foresaw that they were barreling toward a “problem with humanitarian and socioeconomic implications.” The vegetative patients they described could now be kept alive indefinitely—but should they be? At what cost? Who’s to decide? Soon enough, Plum himself was asked to weigh in on the life of a 21-year-old woman.

In 1975, Plum became the lead witness in the case of Karen Ann Quinlan, who’d recently fallen into a vegetative state. She had collapsed after taking Valium mixed with alcohol, which temporarily starved her brain of oxygen. Her parents wanted her ventilator removed. Her doctors refused. In the ensuing legal battle, Quinlan’s family and friends testified that she had said, in conversations about people with cancer, that she wouldn’t want to be “kept alive by machines.” But there was no way to know what Quinlan wanted in her current condition. Plum categorically pronounced that she “no longer has any cognitive function”; another doctor likened her, in his court testimony, to an “anencephalic monster.”

In the end, a court granted her parents’ request to remove Quinlan’s ventilator. The controversy surrounding her case fueled interest in then-novel advance directives, which allow people to spell out if and at what point they want to die in the event of future incapacitation. In recognizing that life might not always be worth living, the court’s ruling also inspired a nascent “right to die” movement in the U.S.

By the time Terri Schiavo, in Florida, made national news in the early 2000s, resurfacing many of the same legal and ethical questions, the science had become more complicated. Schiavo had also been diagnosed as vegetative after she collapsed—from cardiac arrest, in her case. When her condition did not improve after eight years, her husband sought to have her feeding tube removed. Her parents fought back, fiercely. Although most experts found her to be vegetative, those aligned with her parents seized on the newly defined minimally conscious state to argue that Schiavo was still aware. The family released video clips purporting to show her responding to her mother’s voice or tracking a Mickey Mouse balloon with her eyes. If she was still conscious, they argued, she should not be made to die.

Schiavo became a cause célèbre for the religious right, and opinions hardened. Where one side saw parents honoring their daughter’s life, the other saw them clinging to illusory hope. Giacino told me that because of his key role in defining the minimally conscious state, he was asked to examine Schiavo by the office of Jeb Bush, then Florida’s governor. The behavioral exam he planned to perform, Giacino said, could have helped discern whether Schiavo’s responses were real or random. He never did go to Florida, though, because a court proceeding made another exam moot.

Schiavo eventually died when her feeding tube was removed in 2005. The general consensus now holds that she likely was vegetative—an autopsy later found that her brain had atrophied to half its normal size—but Giacino still wonders how that correlated with her level of consciousness. Because he never examined her himself, he personally reserved judgment.

If Schiavo—or let’s say a hypothetical patient diagnosed as vegetative, like her—were in fact minimally conscious or covertly aware, would that tip the calculus of keeping her alive one way or the other? Which way? On one hand is the horrifying proposition of snuffing out a human consciousness. On the other hand is what some might consider a fate worse than death, of living imprisoned in a body entirely without choice, without freedom. In memoirs and interviews, brain-injury patients who regained communication—Tavalaro among them—speak of despair, of abuse, and of sheer, uninterrupted boredom. They could not even turn their head to stare at a different patch of wall paint. One young man described the particular agony of being placed carelessly in a wheelchair and forced to sit for hours atop his testicles. Some have tried to end their life by holding their breath, which turns out to be physically impossible. The classical notion of a totally mindless vegetative state offered at least meager solace: a person devoid of consciousness would not experience pain or suffering.

One-third of locked-in patients, who can communicate only using their eyes, have thought of suicide often or occasionally, according to a survey of 65 people conducted by Laureys, the Belgian neurologist. But a majority of these patients have never contemplated suicide. They say they are happy, and those who have been locked in longer report being happier, which squares with other research showing that people with disabilities are in fact quite adaptable in the long term. Of course, those who responded to the survey are not entirely representative of everyone with a brain injury; for one thing, they could still communicate, albeit with difficulty.

What about covertly aware patients, with total loss of communication—are they happy to be alive? As far as I know, only one such person has ever had the opportunity to answer this question. In the 2010 study, after the 22-year-old man answered five consecutive yes-or-no questions correctly, Laureys decided to pose a last question, one to which he did not already know the answer: Do you want to die?

Where the man’s previous responses were clear, this one was ambiguous. The scan suggested that he was imagining neither tennis nor his house. He seemed to be thinking neither yes nor no, but something more complicated—exactly what, we will never know.

I posed a version of this question to the researchers who have devoted their career to understanding disorders of consciousness. Would you choose to live? “If no one was coming to the rescue, if help was not on the way, I wouldn’t want to be in any of these situations,” said Schiff, who has a practical eye toward brain-implant research that could one day help these patients.

Owen was more philosophical. He told me that when people learn about his research, many say they would prefer to die; even his wife says that. But he is less certain. He does not have an advance directive. Perhaps the only thing worse than wanting to die and being forced to live, he said, is to watch everyone let you die when you have decided, in the moment of truth, that you actually want to live.

On one of my trips to the Rainbow Lodge this past winter, Geoff rigged up Ian’s foot switch—one of countless assistive devices his family has tried—to play a prerecorded message for me. “Hey, Sarah, thanks for coming!” it went in Geoff’s singsong voice. “I’m glad to see ya.” His family had hoped, at one point, that Ian’s left foot, which waves back and forth, unlike his permanently fixed right one, could become a mode of communication. But Ian has never been able to push the switch reliably on command. Still, occasionally, he hits the big green button just hard enough to set it off.

I cannot know to what extent, if any, this movement is voluntary. But Ian’s foot is certainly more active at some times than others. While his family and I chatted over lunch at the kitchen table one day, it went tap, tap. “Hey, Sarah, thanks for coming!” Was he trying to join the conversation? “Hey, Sarah, thanks for coming!” If so, what did he want to say?

There was one other instance when I saw his foot moving that much—during a previous visit, when we spoke in detail about Ian’s car crash for the first time. The crash took place in the early morning, after the boys had been together all night. Ian was driving. When Eve was asked to identify the body of the boy who died, Sam, she recognized the white shell necklace Ian had brought back for him from a recent trip to Florida. The third boy—the one who survived—eventually stopped keeping in touch with high-school friends, a disappearance they attributed to survivor’s guilt.

I wondered if our conversation would distress Ian, if we should be replaying these events in front of him. To me, it seemed as though his face had turned especially tense. His foot was going tap, tap, tap. Or was I projecting my own thoughts, as it is so easy to do with someone who cannot respond? “Ian knows he killed his best friend,” Geoff said at one point that night. “By accident.”

The next day, Ian was grinding his teeth. It happens sometimes, Eve told me. Perhaps something hurt. Or his stomach was upset. Or an eyelash was stuck in his eye. They tried to rule out causes one by one, but it’s always a guessing game. I thought back to our conversation the night before, and wondered whether the presence of a stranger probing the traumatic events of his life might have agitated him.

Ian could not walk away from a conversation he did not want to have, nor could he correct the record of what we got wrong. If his memories and cognition are more intact than not, then he has had time—so much time—to live inside his own thoughts. Has he come to his own reckoning over his friend’s death? Does he feel his own survivor’s guilt? Does he ever wish for the fate of one of his friends in the car over the one he was actually dealt? Perhaps being incapable of these thoughts would be a mercy in itself.

At one point, Geoff decided to reprogram Ian’s foot switch, in part to cheer up Molly Holm, one of Ian’s nurses since 2008, who had bruised her ribs slipping on ice. Molly had known Ian back in high school; he was friends with her older brother. She started coming to patterning sessions at the Rainbow Lodge after the accident, taking a position at Ian’s right hand. She later became a nurse. Her first job was at a head-trauma center, where she looked after young men with injuries like Ian’s. In some of the vegetative patients, she would see flashes of what seemed like awareness. But who was she, a very green nurse, to question a doctor’s diagnosis? Some of the men at this facility rarely had visitors, Molly says, their isolation so unlike the warmth of Ian’s home.

[From the April 2024 issue: Sarah Zhang on the cystic-fibrosis breakthrough that changed everything]

That’s what originally drew her, a deeply unhappy 14-year-old, to the Rainbow Lodge all those years ago. (Okay, she admits, she’d also had a huge crush on Ian before the crash.) It drew other people too, including those who temporarily moved into the lodge’s guest rooms during the patterning days: Ian’s girlfriend, Valerie Cashen; a friend of Geoff’s, Karen McKenna, who was 21 and pregnant, and had recently split from her boyfriend; and, perhaps most unexpectedly, the mother of the boy killed in the car crash, Renee Montana. Eve had overheard her primal scream of grief in the hospital, and when they later met, the mothers felt connected rather than divided by their respective tragedies.

Valerie, Karen, and Renee all arrived at the Rainbow Lodge overwhelmed by their own life circumstances. The two younger women stayed for a year or two and became close friends. Karen hadn’t known Ian at all before his injury. She first came to the hospital as a friend of the family; she offered to watch over Ian for Eve because, well, she didn’t have much else to do. She gave birth to her baby while living at the lodge, Eve by her side as her Lamaze coach. Karen’s time caring for Ian helped inspire her to enroll in nursing school, and she eventually became a nurse at the very ICU where she first met Ian.

Renee stayed for a few years. She did not blame Ian for Sam’s death, though she knew that others did. When I asked her if she ever thought about what might have happened if their fates had been switched, she had an immediate answer: “My poor boy would have been institutionalized.”

She didn’t have the means to care for him at home; she didn’t have the Rainbow Lodge. She was a single mom, living with a boyfriend in a disintegrating relationship. Eve and Marshall’s welcoming her into their community kept her from going adrift. “They just saved my life,” she said. Her life took an unexpected turn there too: Renee ended up having another child—her daughter, Morganne—born in 1988, after Renee had a brief affair with Eve’s brother.

Out of these chaotic circumstances, Eve and Renee found their bond as new friends cemented into that of family. Eve was present at this birth as well; she cut Morganne’s umbilical cord. Back at the lodge, they put the newborn girl in Ian’s lap, letting him hold a new life that would not exist had his own not been thrown off course. Morganne, now 37, told me that her earliest memories are of curling up at Ian’s feet to watch TV.

Reflecting on life after Ian’s accident, Eve prefers to speak not of loss but of gains: a new niece, lifelong friends, the entire Rainbow Lodge community. She decided long ago that she could carry others forward—Ian most of all—on her brute optimism. And in our hours of conversation, I never heard her linger on a negative note.

In this respect, Geoff does not take after his mother. “Geoff’s more like, I see your suffering, brother,” Molly told me. He and Ian have a different kind of bond, she added, “because Geoff recognizes that, sometimes, this sucks.”

“No, I mean, it definitely sucks, right?” Geoff said. “Not to be able to communicate sucks.”

Geoff’s coping mechanism is humor, at times dark, at times juvenile. It helps that Ian’s most reliable response is laughter. When he really gets going, his chuckle turns into a full chest shake. Geoff still dreams about the technology that might help his brother communicate. For now, they have the foot switch.

The message Geoff recorded after Molly’s fall was meant to make her, and everyone else, laugh: He blew a fart noise, scattered objects on the ground, and shouted, “Oh my God! What happened there?” Then he slipped the switch under Ian’s left foot.

Geoff was so keen to lift Molly’s spirits because they are a couple, together since 2000. Over the course of their relationship, Geoff had grown close to another of her patients, a spunky boy who eventually died of epidermolysis bullosa, also known as butterfly-skin syndrome, in his 20s. They don’t have children of their own but they had become a caretaking unit, their relationship deepening over their shared love for the boy. Now they care for Ian together, and they will continue to care for him when Eve is gone.

When I was leaving the Rainbow Lodge for the last time, Eve impressed upon me what she hoped people would take away from Ian’s life: “It’s not a sad story.” On this, Molly concurred. Yes, it sucks sometimes. But Ian has been continuously surrounded by people who love him, people who took that love and made something of it.

As if on cue, Ian’s foot switch went off. Fart noise. Objects scattering. “Oh my God! What happened there?” Maybe it was just a random movement of his foot. Maybe he wanted to disagree with his mother’s assessment. Or maybe he agreed that his is not a sad story. If only he could tell us in his own words.

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This article appears in the June 2025 print edition with the headline “Is Ian Still In There?” When you buy a book using a link on this page, we receive a commission. Thank you for supporting The Atlantic.

Ever since the pharmaceutical company Novo Nordisk realized that GLP-1 drugs were useful for more than diabetes, doctors and researchers have struggled to answer a deceptively simple question: Who should be taking them? The medications are highly effective at inducing weight loss, and most Americans are overweight or have obesity. But GLP-1s are also expensive, not covered by most insurance, and designed to be taken for life—not to mention that they frequently give rise to nausea and a loss of appetite. Giving them to every overweight American clearly isn’t appropriate.

Take President Donald Trump. During his first term, a scan showed signs of plaque buildup in his coronary arteries, which put him at risk of a heart attack. In 2020, his body mass index was just over the threshold for obesity. That combination would have made him a candidate for a GLP-1 drug, and indeed, throughout his 2024 campaign, people speculated that he was taking one. Then, last month, Trump’s latest physical showed that he had dropped 20 pounds, moving him from obese to overweight. (Trump has never publicly said that he is on a GLP-1, and when reached for comment, the White House did not address questions about how the president had lost the weight. Trump is “in peak physical and mental condition,” White House Press Secretary Karoline Leavitt told The Atlantic in an emailed statement.)The most revealing aspect of the president’s medical report was the list of drugs he is taking, which includes a combination that amounts to what doctors call “intensive lipid-lowering therapy”—a treatment usually reserved for patients who are at significant risk of cardiac disease. As far as the president’s health is concerned, his weight is no more important than the fact that he is on that drug regimen and that it seems to be working: His LDL (the “bad” cholesterol) has dropped dramatically in recent years.

Trump’s example shows that doctors’ and patients’ primary goal should not be changes in weight alone, but changes in health. GLP-1 drugs can help a wide spectrum of people lose weight, but their risks are likely justified for only a smaller subset of Americans. To say whether the health benefits a person might gain from taking the drugs are worth the expense and likely gastrointestinal distress, physicians cannot rely on weight alone. The calculus can be life-and-death; nearly 1,000 deaths a day are linked to diet-related disease in the United States. To save lives and improve health, doctors, researchers, and politicians need to reckon with the true killer: not weight or size, but a particularly toxic kind of fat.

When humans eat too many calories—especially too many of the highly processed, rapidly absorbed carbohydrates that are so common in the modern diet—fat accumulates around the waist, surrounding and invading the liver, heart, and pancreas. Doctors call it visceral, central, or abdominal fat. It’s more dangerous to health than fat that accumulates in places such as the arms and thighs because it leaks free fatty acids and other molecules into the body, generating inflammation, upending the metabolism, and wreaking havoc on our organs. Visceral fat is linked to cardiovascular disease, stroke, diabetes, 13 types of cancer, and likely some forms of dementia, among other major chronic illnesses. Reduce visceral fat, and these conditions can be prevented or even, in certain cases, treated.

[Read: The science behind Ozempic was wrong]

Visceral fat is closely tied to two hallmarks of metabolic disease: high insulin levels and insulin resistance. Scientists haven’t yet determined which comes first, visceral fat or elevated insulin, but they know that high insulin levels are part of a vicious cycle that promotes fat storage, visceral fat, and disease. As elevated insulin has become dramatically more common—by 2018, more than 40 percent of Americans had high insulin—so too has chronic disease. Six in 10 Americans have at least one chronic disease, and four in 10 have more.

GLP-1 drugs are remarkably effective at reducing visceral fat. In fact, that may be a large part of why GLP-1s so improve the metabolic health of people who take them. The strongest case for use of GLP-1s, then, is in people with excess visceral fat who have begun to suffer its consequences. The crucial problem for physicians is how to identify those people. BMI is a poor measure, but waist size is a good predictor of visceral fat, type 2 diabetes, and atherosclerosis. Certain abnormalities in blood-lipid patterns can indicate the beginning of organ dysfunction.

And yet, the primary metric by which anti-obesity drugs are judged and distributed is weight. Originally, the FDA approved these medications for people with a BMI of 30 or above, or with a BMI of at least 27 and at least one weight-related ailment. But the agency has since quietly removed its references to BMI from the drugs’ labels, which now simply state that the medications are for patients “with obesity” or those who are “overweight in the presence of at least one weight-related comorbid condition.” Without explicitly saying so, this change recognizes that BMI is not a good measure of body fat, nor of the visceral fat that causes the most harm. Yet the agency still requires that clinical trials of obesity drugs use BMI as a criterion for enrolling patients. When I go to obesity-medicine meetings, many of the physicians I speak with still use BMI as a guideline.

[Read: BMI won’t die]

Over the past decade or so, awareness has grown among doctors and patients alike that BMI has limited utility as a health metric. It doesn’t distinguish between muscle and fat. It doesn’t account for how fat tends to be distributed differently on male and female bodies. These shortcomings are important when considering what a patient has to gain from a GLP-1 drug. People of South Asian heritage, for example, can develop insulin resistance at much lower BMIs than other populations. According to the American College of Cardiology, in terms of insulin resistance, a white person with a BMI of 30 can be metabolically equivalent to a South Asian person with a BMI of 23.9. Unfortunately, doctors do not have easy and reliable ways to measure insulin resistance directly. Developing a diagnostic test would go a long way in helping determine who should be treated with anti-obesity medications.

The United States is still deciding how exactly to approach GLP-1s. The Trump administration scrapped a Biden-administration proposal to cover anti-obesity medications under Medicare’s Part D drug benefit, but it hasn’t ruled out future coverage. Within the past year, the FDA has both expanded its eligibility guidelines for the drugs and declared that the drugs are no longer in shortage. That means that compounding pharmacies can no longer produce replicas of Novo Nordisk’s Wegovy and Eli Lilly’s Zepbound, which will reduce the availability of cheaper options but might also curb the risks associated with copycats. Plus, Novo Nordisk and Eli Lilly have recently introduced new discount programs. Early data suggest that the drugs may be useful in treating fatty liver disease, heart failure, and possibly neurodegenerative diseases, which, I suspect, will lead even more people to take them.

If GLP-1s really do become more common in America, everyone who goes on them needs to understand that they are doing so without an endgame. GLP-1 drugs were approved under the premise that patients will stay on them for life, but so far, most people take them for less than a year, in large part because of their side effects, typically high cost, and lack of insurance coverage. Scientists do not have good data on whether and how to get off the drugs without regaining weight, whether they can be used safely and effectively on an intermittent basis, or how to adjust doses downward over the long term. The best way to find those answers is for the FDA to require pharmaceutical companies to gather the data. Letting the companies off the hook by assuming that people are going to be on these drugs forever would be a grave mistake.

[Read: The Ozempic flip-flop]

All of these unanswered questions only add to the urgency of determining who is most likely to benefit from GLP-1s, and who would be safer or healthier by sticking with lifestyle changes and other medications. GLP-1 drugs are not a panacea. They are one powerful tool to help control America’s crisis of metabolic disease—one that we need to get right.

The surgeon general, America’s doctor, is the public face of medicine in the United States. The job is more educational than it is technical. Vivek Murthy, who was appointed as surgeon general during both the Obama and Biden administrations, went on Sesame Street to stress the importance of vaccinations and put out a guidebook to hosting dinner parties as a cure for loneliness.

In many ways, Casey Means is the perfect person for that job. Donald Trump’s new nominee for surgeon general, announced yesterday, is a Stanford-trained doctor who is well-spoken and telegenic. Most important, she clearly knows how to draw attention to health issues. Good Energy, the book she published last year with her brother, Calley (who, by the way, is a special adviser in the Trump administration), is Amazon’s No. 1 best seller in its “nutrition” and “aging” categories. She regularly posts on Instagram, where she has more than 700,000 followers.

In many other ways, however, Means is far from perfect. A leading voice in Robert F. Kennedy Jr.’s “Make America healthy again” movement, she has a habit of trafficking in pseudoscience and at times can be hyperbolic, to put it lightly. Means has said that America’s diet-related health issues could lead to a “genocidal-level health collapse” and that “all of us are a little bit dead while we are alive” because of what she calls “metabolic dysfunction.” She has also written about taking part in full-moon ceremonies and about how talking to trees helped her find love—though she admitted that the rituals were “out there.” And Means (who didn’t respond to a request for comment) has used her platform to promote “mitochondrial health” gummies, algae-laden “energy bits,” and vitamins she described as her “immunity stack.”

Means was not Trump’s top choice for surgeon general. His first nominee, Janette Nesheiwat, was pulled out of contention yesterday amid allegations that she had misrepresented her medical training. Presuming the Senate confirms Means as the next surgeon general, she will be another one of RFK Jr.’s ideological compatriots who have joined him in the Trump administration. National Institutes of Health Director Jay Bhattacharya and FDA Commissioner Marty Makary are both also skeptics of the public-health establishment. Earlier this week, Vinay Prasad, another prominent medical contrarian, assumed a top job at the FDA. Now the “MAHA” takeover of the federal health agencies is all but complete. Earlier today, Trump told reporters that he tapped Means “because Bobby thought she was fantastic.”

Means fits right in with the Trump administration’s approach to health. She dropped out of her medical residency, citing her frustrations with the myopic focus of modern medicine. By her telling in Good Energy, she left her program in ear, nose, and throat surgery because “not once” was she taught what caused the inflammation in her patients’ sinuses. In the third chapter of her book, titled “Trust Yourself, Not Your Doctor,” Means writes that you should not trust physicians, because the medical establishment makes more money when you are sick and does not understand how to treat the root causes of chronic disease.

Alleviating chronic disease is also a passion of Kennedy’s, and the similarities between them run deep. Like the health secretary, Means believes that you should avoid seed oils and ultraprocessed foods. She is prone to musings about the crisis of American health care that lean more Goop than C. Everett Koop. She has proclaimed that Americans have “totally lost respect for the miraculousness of life.” She has said that the birth-control pill disrespects life because it is “shutting down the hormones in the female body that create this cyclical life-giving nature of women.” One of the latest editions of her weekly email newsletter was dedicated to the children’s movie Moana, which she called “a forgotten blueprint for how we lead, heal, and regenerate.” (For the record, Koop, America’s surgeon general during Ronald Reagan’s presidency, never implied that he’d done mushrooms to find love.)  

Tucker Carlson, Joe Rogan, and Andrew Huberman have all hosted Means on their podcasts. Means’s rise is, in many ways, emblematic of modern internet wellness culture writ large: If you’re articulate and confident and can convincingly recite what seems like academic evidence, you can become famous—and perhaps even be named surgeon general. Her most dangerous inclination is to toe the line of her new boss, Kennedy, on the issue of vaccines. On Rogan’s show in October, she questioned whether the barrage of shots kids receive as infants might cause autism. And on Carlson’s podcast, she argued that perhaps certain shots given to infants should be given later in life to avoid overexposure to neurotoxins. There is no scientific evidence to back up those claims.

But at the same time, much of Means’s philosophy toward health doesn’t seem that objectionable. Whereas the books that RFK Jr. has written are crammed full of conspiracy theories, hers focuses on how America’s ills can be treated with whole foods, exercise, and good sleep. It even includes a recipe guide. (Her fennel-and-apple salad with lemon-dijon dressing and smoked salmon is delicious, I must admit.) If her book is any indication, her first move as surgeon general will be to urge parents to cut down on their kids’ sugar consumption. “If the surgeon general, the dean of Stanford Medical School, and the head of the NIH gave a press conference on the steps of Congress tomorrow saying we should have an urgent national effort to cut sugar consumption among children, I believe sugar consumption would go down,” she wrote.

If Means sticks to these issues—encouraging Americans to eat organic, go on a walk, and get some shut-eye—she could be a force for positive change in American health care. If she urges women to forgo birth control, plugs unproven supplements, or uses her bully pulpit to question the safety of childhood vaccines, she will go down as one of the most dangerous surgeons general in modern history. In this way, she is much like Kennedy and the rest of the MAHA universe. Their big-picture concerns sound reasonable and are resonating with lots of people. America does have a chronic-disease problem; food companies are selling junk that makes us sick; the public-health establishment hasn’t gotten everything right. But for every reasonable idea they proffer, there is a pseudoscientific belief that strains their credibility.

When you think of food poisoning, perhaps what first comes to mind is undercooked chicken, spoiled milk, or oysters. Personally, I remember the time I devoured a sushi boat as a high-school senior and found myself calling for my mommy in the early hours of the morning.

But don’t overlook your vegetable crisper. In terms of foodborne illness, leafy greens stand alone. In 2022, they were identified as the cause of five separate multistate foodborne-illness outbreaks, more than any other food. Romaine lettuce has a particularly bad reputation, and for good reason. In 2018, tainted romaine killed five people and induced kidney failure in another 27. Last year, an E. coli outbreak tied to—you guessed it—romaine sent 36 people to the hospital across 15 states. Perhaps ironically, the bags of shredded lettuce that promise to be pre-washed and ready to eat are riskier than whole heads of romaine.

Eating romaine lettuce is especially a gamble right now. Although America’s system for tracking and responding to foodborne illnesses has been woefully neglected for decades, it has recently been further undermined. The Biden administration cut funding for food inspections, and the Trump White House’s attempts to ruthlessly thin the federal workforce has made the future of food safety even murkier. The system faces so many stressors, food-safety experts told me, that regulators may miss cases of foodborne illness, giving Americans a false sense of security. If there’s one thing you can do right now to help protect yourself, it’s this: swearing off bagged, prechopped lettuce.

[Read: The onion problem]

Americans aren’t suddenly falling sick en masse from romaine lettuce, or anything else. “There’s just millions of these bags that go out with no problem,” David Acheson, a former FDA food-safety official who now advises food companies (including lettuce producers), told me. But what’s most disturbing of late is the government’s lackadaisical approach to alerting the public of potential threats. Consider the romaine-lettuce outbreak last year. Americans became aware of the outbreak only last month, when NBC News obtained an internal report from the FDA. The agency reportedly did not publicize the outbreak or release the names of the companies that produced the lettuce because the threat was over by the time the FDA determined the cause. The rationale almost seems reasonable—until you realize that Americans can’t determine what foods are, or aren’t, safe without knowing just how often they make people sick. (A spokesperson for the FDA didn’t respond to a request for comment.)

In that information void, forgoing bagged lettuce is a bit like wearing a seat belt. In the same way that you likely don’t entirely avoid riding in a car because of the risk of an accident, it’s unnecessary to swear off all romaine because it could one day make you sick. Lettuce and other leafy greens are full of nutrients, and abandoning them is not a win for your health. That doesn’t mean, however, that you shouldn’t practice harm reduction. Buying whole heads of lettuce might just be the life hack that keeps you from hacking up your Caesar salad.

Bagged lettuce ups the odds of getting a tainted product. When you buy a single head of lettuce, you’re making a bet that that exact crop hasn’t been infected. But the process of making prechopped lettuce essentially entails putting whole heads through a wood chipper. Once a single infected head enters that machine, the pieces of the infected lettuce stick around, and it’s likely that subsequent heads will become infected. “Buying a head of romaine lettuce is like taking a bath with your significant other; buying a bag of romaine lettuce is like swimming in a swimming pool in Las Vegas,” Bill Marler, a food-safety lawyer, told me.

There’s also some evidence that chopping romaine makes the lettuce more susceptible to pathogens. One study that tested the growth of E. coli on purposefully infected romaine found that within four hours of cutting the lettuce into large chunks, the amount of E. coli on the plant increased more than twice as much as on the uncut lettuce. Shredding the lettuce was even worse; the E. coli on that plant increased elevenfold over the same time period. The theory for why this occurs is similar to the reason cuts make people more susceptible to infection; essentially, cutting romaine breaks the outer protective layer of the lettuce, making it easier for bacteria to proliferate. (This experiment was done in relatively hot temperatures, so your chopped lettuce is likely safer if you keep it refrigerated. But the convenience of pre-shredded lettuce still comes with yet another additional risk.)

[Read: The dilemma at the center of McDonald’s E. Coli outbreak]

And no, washing your bagged lettuce rigorously is not the answer. If it’s infected, only a thorough cooking is going to kill the bacteria and protect you from getting sick. Rinsing your vegetables is “a mitigation step that’s reducing risk, but it is not a guarantee,” Benjamin Chapman, a food-safety expert at North Carolina State University, told me. Buying whole heads of lettuce is an imperfect solution to a major problem, but it’s the best thing consumers can do as regulators have continued to drop the ball on food safety. A lot of lettuce is contaminated by irrigation water that comes from nearby feedlots, and yet it has taken the FDA a decade to enforce water-quality standards for most crops. The FDA has also continually fallen behind on its own inspection goals. A January report from the Government Accountability Office, the government’s internal watchdog, found that the FDA has consistently missed its targets for conducting routine food inspections since 2018.

Politicians of both parties have seemed content to make cuts to an already overstressed system. Late last year, the Biden administration announced that it was cutting $34 million in funding to states to carry out routine inspections of farms and factories on behalf of the FDA, reportedly because the agency’s budget needed to make up for inflation. And under Health and Human Services Secretary Robert F. Kennedy Jr., the FDA is now making steep funding and staff cuts. Although the Trump administration has claimed that no actual food inspectors will be laid off as a result of government downsizing, there’s already evidence that the moves will, in fact, make it harder for the government to respond when illnesses strike. Spending freezes and cuts to administrative staff have reportedly made it more difficult for FDA inspectors to travel to farms, and for them to purchase sample products in grocery stores for testing. A committee tasked with exploring a range of food-safety questions, including probing what strains of E. coli cause bloody diarrhea and kidney failure, has been shut down, and a key food-safety lab in San Francisco has been hit with wide-scale layoffs, according to The New York Times. (Employees at the San Francisco lab told me that they are now being hired back.)

Skipping prechopped bagged lettuce might sound like neurotic advice, but a leafy-green outbreak is almost guaranteed to occur in the coming months. One seems to happen every fall, and it’ll be up to RFK Jr. to respond. Although Kennedy has promised to foster a culture of radical transparency at the federal health agencies, his first months on the job haven’t been reassuring. The staff at the FDA’s main communications department—employees typically tasked with briefing national news outlets during outbreaks—have been fired. So have staff at public-record offices. Government updates on the ongoing bird-flu outbreak have virtually stopped. It’s reasonable to assume that the Trump administration will take a similar “see no evil, hear no evil, speak no evil” approach to foods that can make us sick.

“I’m really worried that we are going to see the number of outbreaks, and the number of illnesses, go down—and it has nothing to do with the safety of the food supply,” Barbara Kowalcyk, the director of the Institute for Food Safety and Nutrition Security at George Washington University, told me. “It just means if you don’t look for something, you don’t find it.” With so much uncertainty about food safety, busting out a knife and chopping some lettuce beats a trip to the hospital, or a night hugging the toilet.

Matthew J. Memoli has had an exceptionally good year.

At the beginning of January, Memoli was a relatively little-known flu researcher running a small lab at the National Institute for Allergy and Infectious Diseases (NIAID) at the National Institutes of Health. Then the Trump administration handpicked him to be the acting director of the $48 billion federal agency, a role in which he oversaw pauses in award payments, the mass cancellation of grants, the defunding of clinical trials, and the firing of thousands of employees. Now the NIH’s principal deputy director, Memoli will soon see his own research thrive as it never has before: He and a close collaborator, Jeffery Taubenberger, also at the NIH, recently approached Health Secretary Robert F. Kennedy Jr. to pitch their research, three current and former NIH officials familiar with the matter told me. And as The Wall Street Journal reported on Thursday, the pair are now set to be awarded up to $500 million for their in-house vaccine research. (All of the current and former NIH officials I spoke with for this story requested anonymity out of fear of professional retribution from the federal government.)

In a press release last week, the Department of Health and Human Services described the award’s goal as developing universal vaccines against flu viruses, coronaviruses, and other “pandemic-prone viruses”—at face value, a worthwhile investment. Universal vaccines are designed to guard against multiple strains of a virus at once, including, ideally, versions of a pathogen that haven’t yet caused outbreaks.

But this particular course toward pandemic prevention is shortsighted and suspect, several vaccine researchers and immunologists told me, especially when the administration has been gutting HHS staff and stripping funds away from hundreds of other infectious-disease-focused projects. As described in the press release, this new project, dubbed Generation Gold Standard, appears to rely on only one vaccination strategy, and not a particularly novel one, several researchers told me. And the way the award was granted represents a stark departure from the government’s traditional model of assembling panels of independent scientific experts to consider an array of research strategies, and simultaneously funding several projects at separate institutions, in the hopes that at least one might succeed. Memoli’s involvement in this latest award “is clearly someone taking advantage of the system,” one official told me.

When I reached out to HHS and Memoli for comment, they gave conflicting accounts of Generation Gold Standard. An HHS spokesperson confirmed to me that the sum of the award was $500 million and referred only to Memoli and Taubenberger’s vaccine technology when discussing the initiative, describing it as “developed entirely by government scientists.” Memoli, in contrast, wrote to me in an email that the $500 million sum would “support more than one project,” including partners within NIH and outside the agency, and described Generation Gold Standard as “a large-scale investment in a host of research.” When I asked HHS for clarification, the spokesperson told me that the funding “will support multiple projects,” adding that “the first initiative focuses on influenza.” The spokesperson and Memoli did not respond to questions about the criteria for other projects to be included in this initiative or the timeline on which they will be solicited or funded.

Neither Memoli nor Taubenberger’s work has ever received this level of financial attention. Both have spent much of their careers running small labs at NIAID. Taubenberger, who did not respond to a request for comment, has long been respected in the field of virology; a few years ago, he received widespread recognition for uncovering and sequencing the flu virus that caused the 1918 flu pandemic. Last month, he was also named the acting director of NIAID, after its previous director, Jeanne Marrazzo, was ousted by the Trump administration. He has frequently collaborated with Memoli, whose work has flown more under the radar.

Memoli’s appointment to acting director was also unorthodox: Prior to January, he had no experience overseeing grants or running a large federal agency. He had, though, criticized COVID-vaccine mandates as “extraordinarily problematic” in an email to Anthony Fauci in 2021; Jay Bhattacharya, now the head of NIH, praised Memoli on social media for the scuffle, calling him “a brave man who stood up when it was hard.” And last year, during an internal NIH review, Memoli described the term DEI—another Trump-administration bugaboo—as “offensive and demeaning.”

Memoli and Taubenberger’s vaccine technology could end up yielding an effective product. It relies on a type of vaccine composed of whole viruses that have been chemically inactivated; at least one of the vaccines under development has undergone safety testing, and has some encouraging preliminary data behind it. But flu viruses mutate often, hop frequently across species, and are tricky to durably vaccinate against; although scientists have been trying to concoct a universal-flu-vaccine recipe for decades, none have succeeded. When the goal is this lofty, and the path there this difficult, the smartest and most efficient way to succeed is to “fund as broadly as you can,” Deepta Bhattacharya, an immunologist at the University of Arizona (who is unrelated to Jay Bhattacharya), told me. That strategy has long been core to the mission of the NIH, which spends the majority of its budget powering research outside the agency itself.  

Memoli and Taubenberger’s whole, inactivated virus strategy is also “not exactly cutting-edge,” Bhattacharya said. The technology is decades old and has been tried before by many other scientists—and has since mostly fallen out of favor. Newer technologies tend to be more effective, faster to produce, and less likely to cause side effects. And the pair’s vaccine candidates have yet to clear the point at which many immunizations fail in clinical trials; usually, funding of this magnitude is reserved for projects that already have strong data to suggest that they’re effective at reducing disease or infection, Bhattacharya said. Already, though, HHS seems confident in how the project will play out, according to its press release: The department is targeting FDA approval for at least one of the vaccines in 2029, and claims that the vaccines will be adaptable for other respiratory viruses (such as RSV and parainfluenza). But no published evidence supports the technology’s compatibility with those other viruses.

Multiple vaccine experts told me that Memoli and Taubenberger’s work is not, on its own, a $500 million initiative; half a billion dollars would be “a truly absurd amount of money” for any single research initiative, one NIH official told me. NIH labs are usually funded by the agency institutes they’re based in, and given much smaller budgets: For fiscal year 2025, NIAID sought just $879 million of its total $6.6 billion budget for its roughly 130 internal research groups. At a recent meeting of NIAID leadership, even Taubenberger admitted that he was shocked by the sheer dollar amount that the initial HHS announcement had tied to his platform, an official who attended that meeting told me.

In their responses to me, both Memoli and HHS claimed that the $500 million would eventually fund multiple projects. But neither would respond to questions about how that other research would be identified or how much money would be directed to Memoli and Taubenberger’s work, which was the only research mentioned in HHS’s announcement of the initiative. Memoli and Taubenberger’s vaccine does appear to be Generation Gold Standard’s linchpin: Memoli and the HHS spokesperson both said that their project would be the initiative’s main starting point. That still puts “a lot of eggs in one basket,” Marion Pepper, an immunologist at the University of Washington, told me. If Memoli and Taubenberger’s vaccine technology fails, without clear alternatives, the country may be especially vulnerable when the next big outbreak hits.

At the start of the coronavirus pandemic, one NIH official pointed out to me, the first Trump administration did pour billions into developing mRNA-based vaccines—a new technology that was, at the time, unproven. The government invested especially heavily into the pharmaceutical company Moderna, which has continued to receive substantial federal grants for its mRNA vaccine work. (HHS, however, is now reportedly considering pulling funds from one of Moderna’s contracts, worth nearly $600 million, awarded to develop vaccines against flu viruses that could cause pandemics, such as the H5N1 bird flu.) But the early data on mRNA vaccines, and the speedy manufacturing timeline they promised, made them “a smart bet,” the official said. “I’m not sure Memoli’s is.”

While funding Moderna, the government also distributed its resources elsewhere—including to several other types of immunizations, made by several other companies, all of them with massive research teams and a long history of scaling up vaccine technology and running enormous clinical trials. The new initiative, meanwhile, appears to come at the expense of other vaccine-related work that was already in motion. The money for Generation Gold Standard, one NIH official told me, comes from HHS’s Biomedical Advanced Research and Development Authority (BARDA), and was reallocated from funds originally set aside for Project NextGen, a $5 billion Biden-administration initiative to develop new COVID-19 vaccines and therapeutics. The HHS spokesperson told me that the shuffling of funds “realigns BARDA with its core mission: preparing for all flu viral pathogens, not just COVID-19,” and called Project NextGen “wasteful.” (SARS-CoV-2, the coronavirus that causes COVID-19, is not a flu virus.)

NIH leaders are well within their rights to funnel money toward favored scientific pursuits. Francis Collins, who served as director until 2021, wasn’t shy about pushing through the NIH’s neuroscience-focused BRAIN Initiative or the All of Us precision-medicine program. Monica Bertagnolli, who until January directed the NIH, kick-started the health-equity-focused CARE for Health program and advanced a Biden White House initiative on women’s health. But those programs funded a wide array of projects—and none concentrated resources of this scale on any single NIH leader’s own work. Taubenberger is also listed as an inventor on a patent on the vaccine technology, which isn’t unusual in vaccine research, but it means that he could be set up to directly benefit from HHS’s huge investment. (When I asked Memoli if he and Taubenberger might both receive royalties from a commercialization of their vaccine technology, he noted that he was not listed as an inventor and had “no right to royalties on that particular patent.”)

Heavily funding in-house vaccine research does align, in one way, with the apparent priorities of Kennedy, who has railed against the influence of private companies on medicine. The press release about this “gold standard” vaccine project brags that the technology is “fully government-owned and NIH-developed,” which “ensures radical transparency, public accountability, and freedom from commercial conflicts of interest.” The statement also notes that one of the vaccine technology’s assets is its “traditional” approach—a potential appeal to Kennedy’s skepticism of newer vaccine technologies, one NIH official told me. (Kennedy has been critical of COVID-19 vaccines and recently falsely claimed that vaccines that target only one part of a respiratory pathogen—so called single-antigen vaccines—don’t work.)

Kennedy, a longtime anti-vaccine activist, does not appear to have sought out vaccine research to fund, though. Memoli “is really the one who has pushed this ahead,” one NIH official told me: A few weeks ago, he dispatched Taubenberger to brief Kennedy on the pair’s work. (Memoli did not respond to questions about this briefing or about how he had solicited so much of Kennedy’s support.) No matter the instigator, though, the outcome sends an unsettling message to the rest of the American research community—“the only way to overcome HHS priorities is to be part of the inner circle,” the University of Arizona’s Bhattacharya told me. One NIH official put it more bluntly: “It’s very clear it’s all cronyism going forward.”

During the crucial early weeks of pregnancy, when fetal cells knit themselves into a brain and organs and fingers and lips, a steady flow of man-made chemicals pulses through the umbilical cord. Scientists once believed that the placenta filtered out most of these pollutants, but now they know that is not the case. Along with nutrients and oxygen, numerous synthetic substances travel to the womb, permeating the fetus’s blood and tissues. This is why, from their very first moments of life, every American newborn carries a slew of synthetic chemicals in their body.

Crucially, many of these chemicals have never been tested for safety. Of those that have, some are known to cause cancer or impede fetal development. Others alter the levels of hormones in the womb, causing subtle changes to a baby’s brain and organs that may not be apparent at birth but can lead to a wide variety of ailments, including cancer, heart disease, infertility, early puberty, reduced IQ, and neurological disorders such as ADHD. How did we end up in this situation, where every child is born pre-polluted? The answer lies in America’s fervor for the synthetic materials that, beginning in the mid-20th century, reshaped our entire society—and in the cunning methods that chemical makers used to ensure their untrammeled spread.

It began in 1934, when the munitions company DuPont was struggling to rescue its reputation. A new blockbuster book, Merchants of Death, argued that the company had unduly influenced America’s decision to enter World War I, then reaped exorbitant profits by supplying its products to America’s enemies and Allied forces alike. Meanwhile, a congressional probe had uncovered a bizarre plot—allegedly funded by DuPont and other companies that opposed the New Deal—to overthrow the U.S. government and install a Mussolini-style dictatorship. Almost overnight, DuPont became a national pariah.

In response, the company hired a legendary PR consultant who concluded that there was only one way DuPont could escape the controversy: by transforming itself in the public’s mind from a maker of deadly munitions into a source of marvelous inventions that benefited the general public. In 1938, the company debuted the first of these revolutionary materials: nylon, which could be spun into fibers “as strong as steel, as fine as the spider’s web,” a DuPont executive declared at the unveiling. The company’s wildly popular exhibit at the 1939 New York World’s Fair featured a shapely Miss Chemistry rising out of a test tube in a nylon evening gown and stockings. When nylon stockings went on sale in 1940, they sold out almost immediately.  

But it wasn’t until World War II that synthetics really took off. Faced with shortages of natural materials such as steel and rubber, the U.S. government spent huge sums developing synthetic materials and expanding the assembly lines of chemical companies so that they could produce the quantities needed for global warfare. After the conflict, industry transformed these substances into a cornucopia of household goods. The plastic polyethylene, used to coat radar cable during the war, became Tupperware, Hula-Hoops, and grocery bags. An exotic new family of chemicals developed through the top-secret Manhattan Project showed up in products such as Scotchgard fabric protector. These substances, known to scientists as perfluoroalkyl and polyfluoroalkyl substances, or PFAS, gave ordinary goods uncanny resistance to grease, stains, water, and heat. They soon found their way into thousands of household items.

With the world suddenly awash in synthetics, people had access to a huge variety of low-cost goods—and this brought thousands of new chemicals into American homes. Most people didn’t give much thought to the implications. But manufacturers sponsored research on the health effects of the new substances they were using, much of it performed in the laboratory of Robert Kehoe, a toxicologist with a quasi-religious faith in the power of technological progress to solve society’s problems.

When I visited Kehoe’s archives at the University of Cincinnati, they were brimming with unpublished reports linking synthetic chemicals to a wide variety of health problems. Kehoe believed that the secrecy was justified. These chemicals, he argued in a 1963 essay that I found among his papers, would be desperately needed to “feed, clothe and house those who will populate this bountiful land in succeeding generations.” Given that the science was still developing, he wrote, focusing the public’s attention on the chemicals’ toxicity would be “neither wise nor kind.”

But by the 1950s, the emerging scientific consensus was that many man-made chemicals could disrupt key bodily functions, making them harmful at lower doses than ordinary poisons. A small but vocal group of activists began raising concerns about the lack of testing for chemicals in the food supply. They found an advocate in James Delaney, a Democratic congressman from New York, who formed a committee to investigate the issue. One of his lead witnesses was Wilhelm Hueper, a former DuPont pathologist who, according to his unpublished autobiography, had warned his employer of the link between synthetic chemicals and cancer as early as the ’30s. During his testimony, Hueper argued that because synthetic compounds could be damaging in minuscule doses and the effects were cumulative, no level of exposure to them could be presumed safe. He advised the lawmakers to require that chemicals in food be “tested for toxic and possibly carcinogenic properties,” and to ban those that cause cancer.

The titans of American industry had other ideas. Aided by the PR firm that would later pioneer Big Tobacco’s campaign to discredit the science on the harms of smoking, chemical companies lobbied lawmakers, hosted all-expenses-paid conferences for journalists, and placed pro-industry science materials in public-school classrooms, according to meetings minutes from the chemical industry’s main trade association. These efforts paid off. In 1958, when Congress passed a law requiring safety testing for chemicals that wound up in food, the thousands of substances already in use were presumed to be safe and grandfathered in.

One of those substances was Teflon, which is made with PFAS, or forever chemicals, as they are now known. According to correspondence in Kehoe’s files, DuPont had previously avoided marketing it for use in most consumer goods because of toxicity concerns. Workers who inhaled Teflon fumes developed flu-like symptoms. When scientists in Kehoe’s lab exposed dogs, guinea pigs, rabbits, and mice to the gases Teflon emitted when heated, many died within minutes, according to an unpublished 1954 report. But because Teflon’s ingredients had been grandfathered in, the company no longer needed to prove its safety to the government—only its benefits to customers. In 1959, it invited a reporter from Popular Science to its Wilmington, Delaware, headquarters for a pancake demonstration using a prototype Teflon pan. According to the magazine, the cakes came out nicely brown and left no crusty residue, “because the pan was lined with Teflon, a remarkable fluorocarbon plastic” that was “as slippery as ice on ice.” By 1962, DuPont-branded Happy Pans were flying off store shelves.

That same year, the naturalist Rachel Carson published Silent Spring, introducing the public to the disquieting idea that man-made chemicals were inundating people’s bodies. Most of the research Carson had drawn on wasn’t new. It was the same data that scientists such as Hueper—whom Carson cited at length—had developed decades earlier, but Carson was the first to pull it all together for a broad audience. The grassroots environmental movement ignited by Silent Spring led to the creation of the EPA in 1970 and, six years later, the passage of the Toxic Substances Control Act, which gave the agency power to regulate chemicals. Thanks to aggressive industry lobbying, the law was appallingly lax. Manufacturers weren’t required to proactively test new chemicals for safety except in rare cases, and once again, existing chemicals were grandfathered in.

By the time of the bill’s passage, DuPont and another manufacturer, the Minnesota-based 3M, had discovered that PFAS were accumulating in the blood of people around the country. Internal industry studies from this period showed that the chemicals refused to break down in the environment—meaning that every molecule the companies produced would linger on the planet for millennia. The chemicals were also found to build up rapidly in the food chain and lead to devastating health effects in lab animals. One 1978 study of PFAS in monkeys had to be aborted two months early because all of the monkeys died.

When DuPont and 3M began investigating the chemicals’ effect on workers, the results were even more troubling. A 1981 study of “pregnancy outcomes” among women in DuPont’s Teflon factory, which was later revealed through litigation, found that two of seven pregnant workers gave birth to babies with serious facial deformities, a “statistically significant excess” over the birth-defects rate in the general population. But rather than alerting employees or the public, the company simply abandoned the research.

A spokesperson for DuPont, which in 2015 spun off the division that made PFAS as part of a major restructuring, told me that he was “not in a position to speak to products that were or are a part of businesses that are owned by other independent, publicly traded companies.” A spokesperson for 3M said, “Over the decades, 3M has shared significant information about PFAS, including by publishing many of its findings regarding PFAS in publicly available journals dating back to the 1970s,” and added that 3M is on target to remove PFAS from its manufacturing globally by the end of 2025.

Limiting the use of PFAS now, however, doesn’t change how far the chemicals, and their damages, have already spread. A large body of research by independent scientists has linked forever chemicals to serious health problems, including obesity, infertility, testicular cancer, thyroid disease, neurological problems, immune suppression, and life-threatening pregnancy complications. Researchers tracking the spread of PFAS have found that they suffuse the blood of polar bears in the Arctic, eagles in the American wilderness, and fish in the depths of the ocean. They permeate snow on Mount Everest and breast milk in rural Ghana. A 2022 study of rainwater around the world found that levels of the two best-known PFAS alone were high enough to endanger the health of people and ecosystems everywhere. Less than a century after these chemicals entered the world, nowhere is pristine.

This article has been adapted from Mariah Blake’s forthcoming book, They Poisoned the World: Life and Death in the Age of Forever Chemicals.

In the morning weekday rush, any breakfast will suffice. A bowl of cereal, buttered toast, yogurt with granola—maybe avocado toast, if you’re feeling fancy. But when there’s time for something heartier, nothing satisfies like the classic American breakfast plate, soothing for both stomach and soul. No matter where you get the meal—at home, a diner, a local brunch spot—it’s pleasingly consistent in form and price: eggs, toast, potatoes, and some kind of salty, reddish meat, with orange juice and coffee on the side. Pancakes, if you’re really hungry. If you’re craving a filling, greasy, and relatively cheap meal, look no further than an all-American breakfast.

The classic breakfast hasn’t changed in roughly a century. A Los Angeles breakfast menu from the 1930s closely resembles that of my neighborhood greasy spoon in New York; diners from Pittsburgh to Portland offer up pretty much the same plate. The meal’s long-lived uniformity—so rare as food habits have moved from meatloaf and Jell-O cake to banh mi and panettone—was made possible by abundance: Each of its ingredients has long been accessible and affordable in the United States.

But lately, breakfast diehards like me have noticed a troubling change. At my neighborhood diner, a breakfast plate that cost $11.50 in 2020 now costs $14—and it isn’t just because of inflation. Although all kinds of food have gotten more expensive in recent years, traditional breakfast has had a particularly rough go of it. The cost of eggs has soared; supply shortages have driven coffee and orange-juice prices to historic highs. And that’s not even taking President Donald Trump’s tariffs into account. “Milk, sausage, certainly not coffee—these things are not going to get cheaper,” Jason Miller, a supply-chain-management professor at Michigan State University who researches the impact of tariffs, told me. The stream of staples that have made American breakfast so cheap for so long is now starting to sputter.

Breakfast can symbolize an entire nation: the full English, the French omelet, Belgian waffles. In many ways, America’s plate chronicles the nation’s history. Reverence for bacon and eggs was partly inherited from the English; a vigorous public-relations campaign later cemented its popularity. In the 18th century, the Boston Tea Party helped tip the nation permanently toward coffee, and Scotch-Irish settlers kick-started American potato growing in New Hampshire. With the Industrial Revolution, access to these and other breakfast foods exploded: Bacon was packed onto trains carrying mass-produced eggs, milk, and potatoes across the country. In 1945, the invention of frozen concentrated orange juice gave all Americans a taste of Florida.

But if breakfast was once a story of American innovation and plenty, it is now something different. No food captures the changes better than eggs. Since 2023, bird flu has wiped out henhouses, leading to egg shortages that have intermittently made buying a carton eye-wateringly expensive. Profiteering in the egg industry may also be keeping prices high: “When there are these horrible bird-flu outbreaks, the producers are actually making a lot more profit,” Miller said. After peaking at more than $8 for a dozen in February, the wholesale cost of eggs has come down, but a carton still costs double what it did at the start of 2020.

Ordering eggs at a restaurant will put even more of a dent in your wallet. Earlier this year, the breakfast chain Waffle House imposed a temporary 50-cent “egg surcharge,” and Denny’s followed suit with a surcharge that varies by region. (Denny’s and Waffle House did not respond to a request for comment.) At restaurants, the price of eggs probably won’t return to pre-bird-flu levels anytime soon, even when outbreaks subside. “In general, stuff tends to not get cheaper,” Miller said. And any reprieve from egg shortages is likely to be short-lived: Scientists predict that bird-flu outbreaks will return year after year, unless the virus is brought under control. Until that changes, the tradition of centering eggs in the morning meal will be costly to uphold.

Another factor endangering the classic breakfast is climate change. The global coffee supply has fallen precipitously because of extreme weather in Brazil and Vietnam, which together produce more than half the world’s beans. Since January 2020, the shortages have driven up the retail price of ground coffee by 75 percent. So far, coffee importers have shouldered most of the rising costs to shield consumers, but “eventually something has to give,” Miller said. Orange juice is likewise drying up. As I wrote in February, all-American orange juice barely exists anymore because Florida’s citrus production has plummeted 92 percent in the past two decades. The spread of an incurable disease and a spate of grove-destroying hurricanes have forced juice companies to rely heavily on oranges imported from Brazil and Mexico. Climate change has also messed with the supply of non-breakfast food, such as chocolate, but it has particularly hammered our morning routines. Even add-ons to the classic breakfast, such as bananas and blueberries, have been in short supply because of extreme weather.

And now the syrup on the pancake: Trump’s trade war is poised to make matters worse. The current 10 percent tariff on most imported goods is just a preview of what could come this summer, if the president’s wider reciprocal tariffs take effect. You can’t exactly grow coffee in Iowa; most of America’s supply is imported from Latin America, and the rest from Vietnam, which could face a 46 percent tariff. Eggs and orange juice are easy to think of as all-American products, but imports have shored up our supply. The Trump administration has turned to Turkey and South Korea to help keep eggs in stock at your grocery store, but bringing over those cartons might soon be subject to steep tariffs.

Even potatoes aren’t immune. Though spuds are the most widely produced vegetable in the U.S., Americans love them so much that the country has become a net importer of them: Canada alone provided $375 million worth of potatoes in 2024. All of those potatoes need to be cooked somehow—often, in canola oil also produced in Canada. Most Canadian foods are exempt from tariffs for now, but considering Trump’s ongoing feud with our northern neighbor, taxes seem like only a matter of time. Even if you don’t eat the classic American breakfast, tariffs are likely coming for your morning meal: Bananas, avocados, berries, maple syrup, and lox, among other foods, are at risk of price increases from tariffs.

Some elements of the breakfast plate are safe—for now. America is a grain-producing powerhouse, so foods such as toast, pancakes, and waffles aren’t expected to become wildly pricey. Bacon and sausage will probably be fine too; if China stops importing U.S. pork as a result of the trade war, there will be an even bigger supply at home, Miller said. A tariff-ridden future could shift more homegrown foods onto the breakfast plate: sausage and pancakes, ham and toast, with a glass of milk to wash it down. Of course, people eat plenty of other foods for breakfast, and these alternatives may just become more popular: Greek yogurt, oatmeal, cereal. Still, a crucial part of breakfast that can’t be overlooked is the cookware used to make it. The majority of America’s toasters, microwaves, coffee makers, juicers, and pans come from China, which currently faces a 145 percent tariff.

Yes, seemingly everything has become more expensive in recent years, and tariffs risk raising the cost of many goods. But it hurts most when higher prices affect the things we count on to be inexpensive. The defining characteristic of the American breakfast is not bacon and eggs, or toast or coffee, but its affordability. Diners proliferated near factories because working-class people knew they could fill up on a classic plate after an overnight shift without fretting about the cost. Now stepping out for a diner breakfast can require a level of budgeting once reserved for fancy brunch.

Whether or not a trade war escalates, the notion of the classic American breakfast is in peril—as is the vision of the nation it once symbolized. The forces affecting orange juice, coffee, and eggs are far harder to control than economic hostility. For the time being, eggs, bacon, and all of the other foods that make up the American breakfast are still available. But if the plate is no longer cheap, it just won’t be the same.

The EBCreate “Miami Mint”–flavored vape is truly a wonder. The device is not particularly technologically advanced; the electronic components inside consist of little more than a battery and a heating coil that turns liquid into mist. The vape smells like a mojito that’s gone a bit sour. But for $25 at my local vape shop, I got this tiny trinket that, by one estimate, contains the amount of nicotine found in 25 packs of cigarettes.

Along with nearly every other flavored vape, it’s also illegal. Though these products are popular and easy to find, they haven’t received the regulatory approval necessary to be sold in stores. Health officials have been unsuccessful at cracking down on these e-cigarettes in large part because they are made overseas and then smuggled into the country. Without government oversight, these devices can be unsafe: Vaping is essentially the equivalent of inhaling a pharmaceutical drug from an unregistered factory, and the devices risk hooking teens on nicotine. But the tricky thing about vapes is that eradicating them might not be in the interest of public health. As I’ve previously written, they’re a helpful off-ramp from smoking for adults who aren’t ready to kick nicotine. Because they don’t burn tobacco, vapes are much safer than cigarettes yet still deliver a similar high.

[Read: Public health as a blueberry-banana problem]

Soon, however, flavored vapes could get much less affordable. The overwhelming majority of illicit vapes are made in China—including mine, which, according to its packaging, was manufactured in Hong Kong. That means these devices are now caught up in President Donald Trump’s tariffs. Chinese-made vapes are subject to a 170 percent tax when they enter the U.S., which will “end up being reflected in the form of higher prices that consumers pay,” Mike Pesko, an economist at the University of Missouri who studies vapes, told me. By most accounts, Trump’s trade war with China is incredibly reckless and shortsighted. But on the issue of vapes, it may actually inject some reason into the chaos.

Exactly how vapes make their way from Hong Kong to smoke shops in Brooklyn or Tuscaloosa is convoluted. At times, the industry can be gallingly lawless. Consider my Miami Mint vape. The brand that made it, EBCreate, used to be called Elf Bar. Its products were especially popular with kids, so the company quickly landed in the crosshairs of FDA regulators. The agency has sent warnings to the companies distributing these products on behalf of Elf Bar, it has fined the shops that sell them, and regulators have even attempted to ban their import into the United States. And yet, the company continues to operate and regularly ship its products here; the name change from Elf Bar was reportedly an attempt to evade the recent import ban. (EBCreate did not respond to a request for comment.)

Because Chinese vapes are illegal, many of the larger chains that sell cigarettes refuse to stock them. So specialty vape shops and smaller convenience stores have taken on all the risk. Exactly how tariffs on vapes will play out isn’t yet clear. For now, prices haven’t budged, but expect price hikes. One retailer has published a blog post warning that “the price of e-cigarettes will definitely increase significantly.”

Although Chinese vape manufacturers have reportedly been known to purposefully mislabel their products as battery chargers or flashlights, the fact that Trump’s tariffs are applied to all goods from China will make it “very hard for the Chinese manufacturers just to mislabel an e-cigarette” in an effort to avoid a tariff, Donald Kenkel, an economist at Cornell, told me. Most vape shops are not massive corporations that can afford to absorb a tariff and sacrifice profits to keep customers happy, so they might have little choice but to raise prices. Paying $50 for a Miami Mint e-cigarette might seem worth the cost to someone who is hooked on nicotine, but when vape prices go up, research suggests that some consumers stop buying. If the tariffs persist in their current form, the price hikes could be steep enough that vape stores go out of business.

Considering that more than 1.6 million American kids are regularly vaping, the mass closure of smoke shops might feel a bit like fumigating an infestation. Higher prices come with a trade-off: When vapes get more expensive, some people turn back to cigarettes. Still, tariffs could simultaneously help root out the most concerning aspects of vapes while maintaining much of their promise. Adults who want to vape have a few legal options. Three vape companies have received FDA authorization to sell their products, and you can find them in major convenience stores such as 7/11. But they are struggling to compete with their illegal counterparts. Doug Kantor, the general counsel of the National Association of Convenience Stores, a lobbying group, told me that many of his association’s members “have lost customers and a lot of sales to people who are willing to carry illegal products.”

Part of the problem is that the legal vapes come in just two flavors: menthol and tobacco. (Smokers can find more flavors in nicotine pouches such as Zyn, which is currently available in 10 different flavors, including cinnamon, citrus, coffee, and whatever “Chill” is.) The Chinese-made versions also just offer far more bang for your buck. A legal product like R. J. Reynolds Vuse Alto appears at first glance to be cheaper than its Chinese competitors—my local 7/11 charges $18.99 for a single “All-in-one kit.” But that vape contains only 1.8 milliliters of nicotine vape juice. For just a few dollars more, you can choose from many Chinese alternatives that contain seven times the amount of nicotine. In January, the tobacco giant Altria, which sells the e-cigarette Njoy, warned investors that its vape business wasn’t growing as expected, because “the illicit e-vapor market has grown to a size and scale beyond our expectations.”

Tariffs could give an edge to legal vapes. Unlike those of their Chinese competitors, their bottom lines will not be seriously hurt by the trade war. A spokesperson for Reynolds American told me in a statement that the company has “diversified some of our production to locations outside of China, so we feel that we are well-positioned” to weather the tariffs. Yesterday, Altria noted on an earnings call that it is “predominantly a U.S. company with a U.S.-focused supply chain.” It’s hard to get excited about a trade policy that ends up propping up the likes of Altria and Reynolds American, both of which sell billions of deadly cigarettes each year. But hiking the price of illegal vapes will likely improve public health. Yes, a portion of vapers will go back to smoking because of the tariffs, but others will turn to products that have actually been vetted by regulators for safety. And the more expensive the vape, the less likely kids are to pick it up.

Trump’s tariffs are akin to performing surgery on the economy with a sword rather than a scalpel. But in the case of vaping, none of the precision policies has worked. Millions of Americans are inhaling an addictive substance into their lungs that is being illegally sold in stores with no oversight. Tariffs, for all their faults, might finally offer a solution.

Photographs by Cheney Orr

In Starr County, Texas, near the state’s southern tip along the U.S.-Mexico border, escaping dementia can feel impossible. The condition affects about one in five adults on Medicare—more than double the national rate. “Everybody has somebody in their family” with dementia, Gladys Maestre, a neuroepidemiologist who studies aging at the University of Texas at Rio Grande Valley, told me.

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For Jessica Cantú, it was her father, Tomas. He asked her, his eldest daughter, never to put him in a nursing home. She promised. “We take care of our own,” she told me. As Tomas’s dementia progressed, the former pastor held to his routines. He played with his 19 grandchildren. He preached Wednesday-night services and hand-delivered donations of rice, beans, and oil across the border. He fed his chickens and sheep, and ate his favorite homemade foods—pineapple upside-down cake, enchiladas with saltine crackers, and cream-of-mushroom chicken over rice.

Dementia looms over the Cantú family tree. Two of Tomas’s 10 siblings had it; Jessica wondered whether more might have, if they’d lived longer. Her maternal grandmother had dementia too. Seven months after her dad’s death, she began working as a nurse practitioner at the county’s first private Alzheimer’s-specific research site, El Faro Health and Therapeutics. “Patients will come in and say, ‘So have you figured it out? What is it?’” she told me. She tells them the truth. “I don’t know what it is that’s causing all of this.”

Dementia has no single trigger. As with many cancers, it can emerge from a lifetime of accumulated strain—from genetics, environment, and behavior. Researchers have identified a dozen risk factors that, if mitigated, could theoretically delay or prevent roughly 40 percent of cases worldwide: traumatic brain injury; conditions including high blood pressure, hearing loss, diabetes, and depression; habits such as smoking, inactivity, and heavy drinking; environmental and social forces including air pollution, social isolation, and limited education.

These “risk factors usually do not come [as] one; they come in clusters,” Maestre said—and in Starr County, an almost entirely Hispanic community, they quickly stack up. Nearly one in three people lives in poverty; a quarter lack health insurance. Chronic conditions are widespread—especially diabetes, high blood pressure, and heart disease—while access to care is limited: There’s just one primary-care physician for every 3,000 to 4,000 people, and few dementia specialists. Low education, language barriers, poor air quality, and extreme heat all compound the threat. These accumulate in cycles of grief and stress: The people I spoke with talked about deaths in the family followed by strokes that cascade into cognitive decline. Dementia isn’t simply a diagnosis. It’s a structural outcome.

Still, many in Starr County struggle to make sense of it. And no matter the cause—no matter which conglomeration of causes—they must live with dementia’s reality.

In the Rio Grande Valley, people are also outliving their odds. The area’s high dementia rate, Maestre has come to believe, may reflect not just risk but endurance: people living longer with the condition.

In general, research shows that Hispanic people tend to live longer than non-Hispanic white people, despite facing higher rates of chronic disease and steeper socioeconomic disadvantages—a pattern sometimes called the “Hispanic paradox.” And in the Rio Grande Valley, part of what might sustain people through dementia, Maestre suspects, is the culture: Dementia is seen less as a medical emergency and more as a natural, if difficult, phase of life. Elsewhere, people with dementia may live in nursing homes or take expensive new Alzheimer’s drugs with modest benefit. In Starr County, many older adults remain at home, surrounded by family who offer familiarity and stimulation. The care is physical, intimate—not clinical, but constant—and backed by research showing that familiar environments and home-based care can enhance both quality of life and cognitive function for people with dementia.

“He was never, never—since the day I brought him to my home—he was never one day alone,” says Juan “Manny” Saenz of his father, Francisco “Pancho,” who died at home last month at age 94. A professional body-shop painter, offshore fisherman, and lifelong jokester, Pancho began to grow forgetful and repetitive about a decade ago. Before Manny’s mom, Amaro, died, she made him promise not to put his father in a nursing home. Under Manny’s care, Pancho’s appearance was impeccable: He was bathed and perfumed, with trimmed nails and a neat mustache. He ate his meals on ceramic dishes, and relished his coffee-and-cookie merienda snack break—or breaks, on days he’d forget the previous ones. Manny, who lives in Rio Grande City, told me exactly what Jessica Cantú had: “We take care of our own.”

Monica Saenz Silva made a similar decision for her mother, Ramona—a bookkeeper at heart, the kind of person who kept every receipt for taxes and reminded her adult children to change their tires. She kept a running calendar of birthdays, not just for family and friends, but also for acquaintances, so she could wish them well. By 2019, a few years after her dementia symptoms appeared, “that was out the door,” Monica told me.

Today, Ramona will approach a taco or hamburger quizzically; she’s forgotten how to bite into them. At times, she doesn’t recognize the house where she’s lived for decades. Still, Monica is determined to keep her there. “You want to keep them home, so they’re in a familiar surrounding,” she said. “It’s not all the time that she doesn’t know she’s home.”

The response of many families here to dementia is shaped, partly, by limited treatment options: Alzheimer’s and related dementias have no cure, and available medicines can be expensive, be limited in their benefits, and come with potentially life-threatening side effects. In Starr County, some caregivers eschew pharmaceuticals for aromatic teas, herbal compresses, and prayers to soothe loved ones, Maestre said. Theirs is an ethic of endurance: If dementia is here, families ask, why not build a life, tenderly, around it?

Still, many don’t speak of it openly. Cantú told me that in her community, many still consider Alzheimer’s to be a normal part of aging—at most, a mental illness of old age, but almost never a neurodegenerative disease. “It’s okay to just be forgetful at the age of 70. It’s okay because Grandma and Grandpa were forgetful at the age of 70,” she said. “There’s no reason to discuss it.”

Still, some caregivers live with a sense of dread: In many cases, the disease does have a genetic component, and the structural forces that compounded their loved ones’ risk haven’t disappeared. They know their turn could be coming. Cantú frets about her mind; Monica Saenz Silva checks her memory every day. And they don’t necessarily want for themselves what they did for their parents: If his time comes, Manny Saenz wants to go to a nursing facility. “You won’t know anything, so it doesn’t matter,” he said. For him, the person with Alzheimer’s is spared the memory of their decline; the burden belongs to those who remember, and that’s a risk he doesn’t want to pass on.

Hispanic Americans face a significantly higher risk of dementia than white Americans, and are also one of the country’s fastest-aging groups. And yet, for decades, scientific understanding of dementia has drawn from data from mostly white, urban, and affluent populations; Hispanics make up fewer than 5 percent of participants in Alzheimer’s clinical trials. That limits researchers’ understanding of the condition. And the more they look, the less dementia seems like a single disease with a uniform pattern, and the more it appears to be a spectrum of diseases—each unfolding with its own course of symptoms, progression, and brain damage.

In some studies, researchers have detected amyloid plaques—the sticky protein clumps long considered hallmarks of Alzheimer’s—more frequently in the brains of white participants with dementia or mild cognitive impairment than in their Black, Asian, or Hispanic counterparts. In several studies that measured tau proteins, another key Alzheimer’s biomarker, Black adults with—or without—symptoms of dementia had lower levels than white participants. The genetic variant most strongly linked to Alzheimer’s disease is less common—and possibly less potent—among people with certain Hispanic backgrounds than among white people.

In 2021, the National Institute on Aging designated a new Alzheimer’s Disease Research Center in South Texas, co-directed by Maestre and Sudha Seshadri, a neurologist at the University of Texas at San Antonio. Their goal is to understand the Rio Grande Valley’s dementia cluster—and what can be done about it—in part by examining the effects of environmental hardship and linguistic isolation, and by investigating protective factors such as bilingualism and family networks.

Eventually, Maestre hopes that urban design (such as shaded walkways, gardens, and spaces for intergenerational interaction) could help reduce the region’s risks. “It’s not possible to put all the responsibility on the individual,” she told me. “You cannot do that on your own.”

And yet, resources remain scarce. Texas is home to about 460,000 people living with Alzheimer’s disease, but compared with other large states such as Florida and New York, it spends much less on dementia-related programs. (The Texas statehouse is considering a bill to establish a $3 billion fund for dementia research.)

For now, families like Jessica Cantú’s are left to do what they can. When her father was a pastor, he would tell her about the sick people he visited who would reach up with their arms (toward the kingdom of heaven, he said) before dying peacefully. In the final weeks of his life, he was still going to church and chatting with people at the H-E-B grocery store. But then Tomas lost his appetite and grew frail. One night, Jessica kept vigil at his bedside, afraid he’d fall trying to get up. In the quiet hours, she said, he lifted both arms toward the ceiling. “He was reaching up to the heavens, to the sky,” she said. “It just gave me that comfort to know that he was ready, and that everything was going to be okay.”

Masha Hamilton contributed reporting.

Support for this story was provided by the Magnum Foundation, in partnership with the Commonwealth Fund.