Overnight, a nurse aide walked into their room and saw blood splattered on the floor, walls, and ceiling, according to a grand jury transcript. Cecchetto’s face “looked twisted and smashed,” the aide testified. A Banning city police officer testified that Timaloa, 77, told him that he had punched Cecchetto twice.

“He just kept saying that Attilio was being too loud: ‘He talks too much,’” the officer said.

Cecchetto died two days later from blunt force facial trauma.

“You get placed in a facility like this to be taken care of, not to be murdered,” one of his sons, Gino Cecchetto, said in an interview. “This was completely preventable at many different points.”

Timaloa pleaded not guilty to assault. The charges were later upgraded to murder, and a judge ordered a mental health evaluation. The judge will rule as early as August on whether Timaloa is competent to stand trial.

PACS Group, the nursing home chain that owns Sunrise, denied negligence. “We strive to provide quality care to everyone we serve, and our hearts continue to go out to the Cecchetto family for their loss,” PACS spokesman Brooks Stevenson said in an email.

In nursing homes primarily occupied by impoverished people as well as posh assisted living facilities that cost upward of $10,000 a month, agitated residents have shoved, punched, bit, and kicked others. They have wielded canes, walkers, pens, a plate, a mop stick, a shoe, a belt buckle, and even the footrests of wheelchairs as weapons, federal inspection reports show.

How often these altercations take place nationwide is unknown, but an of 14 assisted living facilities in New York state led by Cornell University researchers estimated 1 in 7 residents experienced aggression within a month, including verbal, physical, or sexual acts. Their of 10 New York state nursing homes estimated 1 in 5 residents experienced an altercation in a month. Researchers have found that these assailants are to have dementia.

The diseases that cause dementia can impair brain circuits involved in impulse control and threat perception, raising the risk of aggressive behavior. Residents with Alzheimer’s disease and other dementias constitute more than living in these settings, many of which include specialized units.

Often, altercations involving a resident with dementia erupt after danger signals are missed or ineffectively addressed, according to a ºÚÁϳԹÏÍø News examination of court records, police reports, and state and federal inspection reports.

Since the start of 2024, the federal Centers for Medicare & Medicaid Services has faulted nursing homes at least 700 times for failing to protect residents from physical, sexual, or verbal abuse by other residents, CMS inspection reports show. The federal records do not include assisted living facilities, which are regulated by states.

In the first three months of this year, CMS cited nursing homes more often for resident-to-resident abuse than for any other type of abuse, neglect, or exploitation, including abuse by employees, the reports show.

The long-term care industry says not every clash can be averted. Presbyterian Homes & Services, a nonprofit Christian chain of senior living facilities, said in a statement: “Caring for individuals living with advanced dementia is complex, and behaviors can change in ways that are difficult to fully predict or prevent, even with clinical interventions in place.”

Eilon Caspi, a and researcher who studies resident-on-resident altercations, said that usually there is a specific unmet need that precedes an altercation. “In the vast majority of incidents,” he said, “there are warning signs in the months, weeks, days, hours, and sometimes minutes and seconds prior.”

Fertile Battlegrounds

One about Alzheimer’s, the most common dementia disease, holds that as the brain’s networks deteriorate, the balance shifts between the prefrontal cortex, which helps govern judgment and self-control, and limbic regions including the amygdala, which helps process fear and threat responses.

As cognition clouds, people lose the ability to understand what is happening around them and to put distress into words, researchers say. Pain, infection, medication side effects, and other physical and emotional distresses through shouting, intimidating gestures, kicking, pushing, or punching. Long-term care facilities can be triggering environments, with intimate care often delivered by a changing stream of aides whom residents can’t recognize. Amid noise, close quarters, and rigid routines, interactions become flash points.

“You don’t feel safe, because you don’t know these strangers who are coming in and taking off your clothes,” said Al Power, a geriatrician and an advocate for alternative models of care for people with cognitive issues. “These things will be distressing to anybody.”

The Cornell researchers found verbal altercations were the most common type of aggressive interaction but estimated 4% of assisted living residents and 5% of nursing home residents in their studies experienced physical assaults in a month.

Another Cornell study found that Connecticut police were called to nursing homes for more often than allegations of staff abuse, theft, and residents wandering away without supervision combined. A national analysis of survey data from the Centers for Disease Control and Prevention calculated in assisted living facilities engaged in physical aggression or abuse toward other residents or staff members.

Many of the physical aggressions ºÚÁϳԹÏÍø News identified in CMS inspection reports were perpetrated by residents with diagnoses of dementia, schizophrenia, or other cognitive disorders. In some physical altercations, both residents were aggressors, while other fights were one-sided. Sometimes the residents were roommates.

Laura Mosqueda, a geriatrician at the University of Southern California’s Keck Medicine in Los Angeles and a senior adviser to the National Center on Elder Abuse, said: “What worries me is that we just end up blaming two people who have either cognitive impairment or severe, uncontrolled mental health issues, when they’re supposed to be in an environment where people are safe.”

‘Only a Matter of Time’

Gladys Lynch, a retired department store accountant, transferred into the memory care unit at Harbor Crossing in White Bear Lake, Minnesota, in September 2025. Her monthly cost was more than $10,000, according to an invoice provided by the family.

One of Lynch’s daughters, Rebecca Norton, installed web cameras in her room and often saw another resident inside. “Every day I looked at it, this woman would be walking into my mom’s room, harassing her, digging through her things, using her bathroom, yelling at her,” Norton said in an interview. She informed Harbor Crossing’s administration, and the facility said it would start locking her mother’s door.

Norton emailed a Harbor Crossing administrator a list of issues with her mother’s care. “My biggest concern,” she wrote, was that her mother’s door was not consistently locked and the webcam showed the woman had again entered, rummaged through the bathroom, and taken a couple of adult diapers.

Unknown to Norton, Harbor aides had raised concerns about the other resident, who like Lynch was new to Harbor Crossing’s memory unit, according to a . Diagnosed with Alzheimer’s, severe dementia with agitation, depression, and anxiety, the woman was confused, had difficulty communicating her needs, and hit aides.

Aides repeatedly reported that the woman had “ongoing aggression, entered other residents’ apartments, invaded others’ personal space, and was difficult to redirect,” the health report said. They said medications had been ineffective and pressed for new ones. The report said one nurse told the woman’s doctor it was “only a matter of time before” she “hurts another resident.”

Captured on Camera

On the last day of September, she entered Lynch’s room and resisted leaving, the state report said. The next morning, she reappeared. Video of the incident was described in the police and state reports and reviewed by ºÚÁϳԹÏÍø News. It shows Lynch guided the woman out and appeared to attempt to lock the door, but the woman opened it and returned once more.

The woman declared it was her house, went into Lynch’s bathroom, used the toilet, and then returned to the room Lynch was in. Lynch can be seen repeatedly pressing the alert pendant around her neck to signal nurses for help.

The video shows the woman was almost out of her apartment door when she attempted to touch an object near the door. Lynch put her hands up to block her. The woman slapped at her hands and said, “I’m going to kill you if you don’t quit it.” She pushed Lynch, who fell, her head hitting the floor and blood seeping out.

Aides arrived 13 minutes after she had initially pressed her pendant, the state report said. Lynch suffered a brain hemorrhage and fractures to her eye socket and ribs, according to the state report. She died in the hospital five days later at age 96; the medical examiner’s office declared it a homicide.

Norton said her mother was kind and pleasant and never combative. “My mom deserved better than what they gave her,” she said.

Prosecutors declined to bring charges, according to the police report. The Harbor Crossing was responsible for neglect because it was aware the woman “exhibited violent and aggressive behaviors” and yet had failed to put in place effective interventions. Harbor Crossing has requested the state reconsider its findings.

In June, Suzanne Scheller, the attorney for Lynch’s family, filed a wrongful death lawsuit against Presbyterian Homes, which owns Harbor Crossing.

Presbyterian said in a statement: “We are deeply saddened by the loss of Ms. Lynch, and our thoughts remain with her family and all those impacted.” It declined to comment further on the incident or the lawsuit.

Preventive Tactics

Geriatricians, researchers, and resident advocates say long-term care homes should to reduce the risk of altercations, including closer supervision of residents at high risk, relocating them closer to nursing stations, separating residents with repeated conflicts, and adjusting roommate assignments or seating in shared spaces.

Each resident should have a care plan, and homes should train staff to be alert to a resident’s triggers and intervene quickly, dementia specialists say. Organized activities are essential to keep residents occupied and engaged. Antipsychotics and other psychotropic medications are often prescribed, but they can increase the risk of falls, strokes, and .

An aide can be assigned to watch a particularly challenging resident one-on-one, but many places lack enough staff for protracted, dedicated supervision. Some assisted living facilities will tell a resident’s family they must hire a personal aide, who can cost thousands of dollars extra each month. In extreme situations, facilities might send a resident to an emergency room for evaluation or to a psychiatric hospital, or .

Camille Russell, who served as Kansas’ long-term care ombudsman until 2024, said she observed nurses and aides were often “woefully undertrained” in basic elements of dementia care.

“We’ve gotten too far away from making decisions that are caring decisions,” Russell said. “There has to be a balance, and the balance has gotten too far to the profit side.”

A Debilitating Kick

Many physical altercations between residents result in a scratch or a bruise, but nonfatal scraps can leave permanent damage on deeply frail residents.

Linda Twiddy’s first weeks in a Chesapeake, Virginia, memory care unit in August 2024 were happy, her daughter, Barbara Howerin, said in a May interview. Twiddy, a former church secretary with vascular dementia, sang along with a visiting church choir, decorated pumpkins, and visited a cat cafe. The facility, The Vero at Chesapeake, charged Twiddy a one-time $6,825 move-in fee and monthly charges of $7,475, according to the lease.

Seven weeks after Twiddy started living there, a nurse called Howerin. She told her that her mother had been kicked in an altercation with another resident and was being sent to the hospital.

When Howerin arrived at the hospital, she was shocked by the extent of the injury. “It was like 10 inches long by 6 inches wide, the whole front of her shin,” she said. “The calf was just like dangling down.”

According to an internal facility incident report the family obtained, an aide heard Twiddy scream for help and raced over to see a male resident with dementia trying to hit Twiddy as she sat on the floor in “a pool of blood.” The report said, “Linda was screaming get him away from me, he pushed and kicked me.”

The man had prior episodes of aggression, according to documents Twiddy’s family obtained in a lawsuit they brought against The Vero in Chesapeake Circuit Court. At his previous facility, a progress note from 2023 stated, he was “becoming very aggressive in tone and actions to residents and staff.” He “grabbed another resident by the wrists and pushed her,” according to the note. He was sent to an emergency room for evaluation of agitation, according to a hospital report. It did not make clear whether he was discharged back to the facility or elsewhere.

Agitation Tied to Pain

The male resident’s medical records at The Vero said he was diagnosed with late-onset Alzheimer’s disease, agitation, and anxiety, according to his doctor’s deposition. He had chronic pain in his back and trouble sleeping. He could answer simple yes-or-no questions but had trouble providing more extensive answers and couldn’t communicate that he was in pain, she testified. His behavioral changes usually occurred when he had a urinary tract infection, the doctor said.

When he was agitated, aides could sometimes calm him by turning on the television so he could watch his beloved New England Patriots, one aide testified in a deposition. A former aide said she tried to avoid dealing with him altogether. “If you go up to him and he was agitated, he’d reach out to try to grab you,” she testified. “If he had that cane, he would swing that cane or he would punch at you.”

In a court filing, The Vero denied allegations by Twiddy’s family that it should have protected residents from him. The filing said The Vero complied with all standards of care and that any injuries Twiddy sustained “were caused by her own negligence” or acts of others.

In their investigation of the incident, Virginia regulators alleged The Vero had for the health, safety, and well-being of its residents. The inspection report said The Vero pledged to appropriately staff the memory care unit based on the number of residents and to ensure someone completed rounds at least every two hours during sleeping hours.

Twiddy underwent three surgeries at the hospital for her leg, including a skin graft, then spent a month in rehabilitation. “She was never able to walk again,” her son, Doug Twiddy, said in a May interview.

The family moved Linda Twiddy to a different memory care facility where the nursing station had a clear view of all the rooms. She lived there until her death earlier this year.

The lawsuit was settled on confidential terms in early June. Carlton Bennett, the family’s attorney, declined to comment. In an email, Lauren Rogers, a spokesperson for Sinceri Senior Living, which operates The Vero, said the company was pleased the legal case had been resolved but could not comment further, citing confidentiality and patient privacy.

“The Vero at Chesapeake is committed to providing a caring, supportive environment where resident health, safety, and well-being remain our highest priorities,” she said.

A History of Violence

After Attilio Cecchetto was fatally bludgeoned at Sunrise Post Acute, his adult children and their attorney, Jody Moore, discovered disturbing details about Sam Ato Timaloa. He had been imprisoned in 1999 after being convicted of raping an underage girl and sentenced in 2008 to 24 years in prison for attempted murder involving domestic violence, according to Riverside County court records. His public defender declined to comment.

Cecchetto’s sons, Moore, and her colleagues at Moore Hutchins Moore also learned more about the home’s owner, PACS Group, a publicly traded company with more than 300 long-term care facilities. Last year, PACS earned $191 million on revenue of $5.3 billion, according to its .

In the Cecchettos and their father’s widow filed against PACS, they accused the company’s founders, Jason Murray and Mark Hancock, of draining resources from their nursing homes to pay for the chain’s expansion and swell their personal wealth.

The two had earned more than $650 million through stock sales since taking the company public and bought two private luxury jets, according to the lawsuit and securities filings. PACS has also purchased corporate sponsorships for Utah sports teams even though it owns no nursing homes in the state, the lawsuit said.

California regulators fined Sunrise $120,000 for Cecchetto and for not taking Timaloa’s articulated dislike of noise into account when assigning rooms. Medicare issued its own $62,810 fine.

In responding to the Cecchettos’ lawsuit, PACS denied negligence for his death and alleged he “failed to exercise ordinary care on his own behalf for his own safety.” It has sued to overturn the $120,000 state fine, saying it was issued too late and that Sunrise “did what might reasonably be expected of a long-term health care facility licensee acting under similar circumstances” to comply with state rules.

The Cecchettos’ lawsuit asks for a judge to impose robust procedures PACS homes must follow for admissions, staff training, room changes, and the reporting of altercations between residents. The suit asks for a court-appointed monitor to oversee compliance. In its written statement to ºÚÁϳԹÏÍø News, PACS said “important context” would come out during the process and declined further comment.

In an interview, Cecchetto’s three sons, Dino, Gino, and Marco Cecchetto, described their father’s life. He spent his childhood on a farm in Italy, growing up under Benito Mussolini. After World War II he moved to Canada, where he learned to tile and lay marble and terrazzo, a decorative flooring material made of chips of stone, glass, or other materials embedded in cement or resin. He relocated to California in the early 1960s, became naturalized, and worked as a tile journeyman and a contractor for decades.

“We don’t want this to happen to somebody again,” Gino Cecchetto said. “With the life he led, he deserved a quiet, dignified death. Instead, he ended his life in pain and fear.”

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“He was on a nasty, dirty ground in front of a store,” recalled Sonja Smith, who is enraged about the circumstances that led to her husband’s heart failure. “He didn’t deserve to die like that.”

Problems started last year when the couple learned the monthly premium payment for their Federal Employees Health Benefits plan would more than double to $307 and their deductible would also go up. They decided to switch Blackman’s primary coverage to CHAMPVA, a health benefits program for dependents of disabled veterans, which had no premium and a $3,000 deductible.

Smith thought she and Blackman had carefully prepared so that the transition between health plans would be seamless. It was anything but.

After the new health plan became active in January, Smith said, Blackman faced one hurdle after another getting approval for the antirejection medications needed to prevent his body from attacking his transplanted heart. Patients who rely on these drugs can develop severe and life-threatening heart issues if they miss even a few days. She said Blackman had enough medication to last only about a month into the new plan year. He told her just before his death that he had run out.

“I screamed at CHAMPVA. I screamed at the Trump administration. I screamed at the overall healthcare system in this godforsaken country,” she said. “Everybody played a part in what happened to my husband.”

The Department of Veterans Affairs declined to comment on the record about Blackman’s case.

While the couple’s situation was extreme, their challenge of trying to continue a treatment is faced by many who shop for cheaper options as health insurance costs have soared across the country. The United States already has a fragmented health system, in which insurers, clinicians, and drugmakers are largely left on their own to hash out the cost of each medication or service. That lack of standardization leads to layers of bureaucracy for patients; moving to a new plan can ensnare patients in a thicket of red tape, keeping them from care.

Making matters more challenging, Congress didn’t renew covid pandemic-era subsidies that helped lower premiums for Affordable Care Act marketplace plans before this year. The Trump administration is also adding hurdles for people to access Medicaid, a state-federal health insurance program for Americans with low incomes or disabilities, so more people may lose their current coverage.

“We’ve basically set up a series of cracks in our healthcare system that we ask people to jump over,” said , an assistant professor of health policy at the Harvard T.H. Chan School of Public Health. “But if you don’t jump over those cracks, you can lose coverage, or lose access to your doctor, or lose access to your medications.”

‘This Is a Lot’

Insurers calibrate plan prices by negotiating rates with individual clinicians, hospital systems, and drugmakers, leading to varying levels of coverage. Plans with lower monthly costs of doctors and hospitals, and less generous drug coverage.

As a result, when patients choose an insurer — or even a new plan with the same insurer — they may lose access to medications or doctors that they have had for years, said , a research professor in health policy at Georgetown University. There are so many ways “patients could get tripped up,” she said. “When you switch to a new insurance company, they’re going to apply their rules.”

In announced by the Trump administration last year, many insurers voluntarily agreed to reduce some red tape by honoring existing prior authorizations for 90 days when a patient switches health plans. As required by law, they also offer resources such as plain-language plan descriptions and searchable online clinician directories to help patients coordinate care, according to , the main health insurance industry trade group.

“The goal is to ensure every member understands their benefits and can access the care they need without interruption,” said Conner Coles, an AHIP spokesperson.

But patients say understanding their benefits can still be a challenge.

Monique Acosta, 54, had to navigate two health insurance changes after she was laid off from her job at a disability nonprofit in October. The heart transplant recipient and cancer survivor said she paid nearly $900 a month to continue her employer coverage under COBRA, the Consolidated Omnibus Budget Reconciliation Act. Then, in January, the Woodbridge, Virginia, resident switched to Medicaid.

During the transitions, Acosta said, she lost coverage for a postchemotherapy drug. So, she changed her care team to qualify for lower-cost medications through a local hospital’s charity program. Then one of her new doctors reduced the frequency of an injection she had gotten for years. During that time, she said, her red and white blood cell counts plummeted and she struggled to recover from a heart catheterization procedure.

Eventually, her new physician upped the frequency of her injections back to twice a month. “He needed to document it so he could see it himself,” Acosta said. “I was very, very fatigued, very weak, and it’s unnecessarily so.”

Acosta said she is putting off a mammogram until she can better understand her Medicaid plan or find a job with better benefits. “This is overwhelming,” she said. “This is a lot.”

Burden on the Patient

Federal regulations, 43 states, and Washington, D.C., have that require health plans to continue covering doctors and drugs when there is a network change, like when a clinician or hospital that a patient goes to is terminated from the insurer’s network of providers.

But Corlette said that not all the protections address the trip wires people face when they switch insurers on their own, such as during open enrollment or after a major life change.

Still, people can be proactive in a few ways about maintaining care when they change plans, said Shelli Quenga, an insurance agent in South Carolina.

She advises patients to keep written records of their medical and drug history for new providers. Quenga tells her customers to get their new insurance information to their doctors as soon as they switch, not to wait until an appointment. In addition, she said patients can request a case manager with their insurer so they don’t have to repeat their concerns to different staffers.

Even when a patient does homework, doctors can drop out of a network and insurers can change the contours of their plans, McIntyre said.

“Nobody has an incentive to make it make sense,” she said. “This puts a lot of burden on the patient.”

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The drug is now marketed and sold across the state in roadside shops and small-town strip malls with little oversight from health authorities. Highway billboards advertise ivermectin as “Available Without a Prescription in Tennessee!” while dozens of pharmacies offer highly concentrated pills, sometimes at 10 or 20 times the potency of a standard tablet.

Ivermectin is a approved by the FDA for treating , which can generally be done with a single dose of three or four prescription-strength tablets. It is also used as a dewormer for horses and other livestock.

Its popularity surged during the pandemic as fringe doctors and anti-vaccine activists promoted it as a treatment for covid. have shown that ivermectin is against covid.

Nonetheless, it has since become a symbol of resistance against the medical establishment among conservatives and followers of the Make America Healthy Again movement, championed by Health and Human Services Secretary Robert F. Kennedy Jr.

Timothy Caulfield, a professor at the University of Alberta who studies health misinformation, said ivermectin became an “ideological flag” during the covid pandemic, opening the door for influencers to push the drug for other ailments to a “captured audience” even without proof it works for those conditions.

“This is really about profit. This is about political identity. This is about creating distrust in the existing biomedical community. This is about money,” Caulfield said in an interview with ABC News, which partnered with ºÚÁϳԹÏÍø News to report on ivermectin.

After a hantavirus outbreak on a cruise ship earlier this year, unproven claims that ivermectin is effective against the virus have been spread by some popular social media accounts and right-wing figures, including former congresswoman . The World Health Organization says it has seen that shows ivermectin is an effective hantavirus treatment.

Tennessee’s ivermectin bill was shepherded by a Republican supermajority in 2022. Its passage blindsided state medical officials and handed a victory to medical groups that spread covid misinformation.

Some pharmacy websites now offer the drug as a treatment for covid, “long haul vax symptoms,” diabetes, or cancer — despite no evidence of its effectiveness for those purposes — while the largely gives pharmacists immunity from lawsuits or professional sanctions related to ivermectin.

The law was also a harbinger of legislation to come: More than two dozen states have since considered look-alike bills that would make the politicized medication available without a requiring a doctor visit. 

John Mafi, a UCLA internal medicine physician who has studied the rise of ivermectin among cancer patients, worries it will lure people away from proven treatments. He co-authored a new study in prescribing rates for ivermectin and another antiparasitic drug, particularly in the South. The rise followed a January 2025 episode of the Joe Rogan Experience podcast in which actor Mel Gibson claimed ivermectin and other drugs cured three friends with stage 4 cancer.

“It’s going back to 19th-century quack science,” Mafi said about off-label use of ivermectin. “It is alarming that I’m seeing this really unproven therapy being touted to so many potentially vulnerable Americans.”

The FDA says ivermectin can be . Tennessee has seen a small but concerning rise in signs of overuse. The Tennessee Poison Center, which fields calls from people exposed to drugs or toxic substances, received more than 60 calls for possible ivermectin poisoning in 2025, the most since 2021. They included reports of vomiting, blurred vision, neurological problems, and difficulty walking.

“People are taking this because they just feel unwell. It’s almost like a panacea now,” said Rebecca Bruccoleri, the poison center’s medical director. “I’ve heard rumblings on the internet of using ivermectin for an alternative cancer treatment, and we’re seeing it definitely in here.”

Pharmacist Paul Hughey has dispensed ivermectin under the new law at two Tennessee pharmacies: Mt. Juliet Pharmacy and Compound Rx. He estimated that “up to 20 people in a week” are buying ivermectin but that peak demand was double or triple that amount.

For years, Hughey said in an interview, customers have relayed emotional “testimonies” about the drug healing the sick, “especially with the cancer patients.”

“I’ll get a doctor call in and they say: ‘Guess what. So-and-so is cured.’ And it’s just amazing to hear that. So anybody who doubts that,” Hughey said, “I don’t really know that they’re practicing medicine. I think they’re just following the narrative.”

‘I’ve Taken Bucketloads of This Stuff’

The linchpin of Tennessee’s ivermectin market is , a conservative doctor to the creation of the 2022 ivermectin law. She has with pharmacies across the state empowering them to sell the drug.

Tennessee’s law to dispense ivermectin without a specific prescription for each patient, through a “collaborative pharmacy practice agreement” with a doctor who provides what is functionally a pre-written, nonspecific prescription for all potential customers.

In podcast interviews, Sibley has said she has made as many as 40 of these agreements with Tennessee pharmacies, which she said forward her the paperwork on each ivermectin customer. Before selling the drug, pharmacies are required to ask customers questions about medical conditions and medications that could cause complications if taken with ivermectin. Afterward, the collaborating physician also is expected to receive a record for each person who purchases ivermectin.

“We literally have folks coming from all over the world to get our ivermectin,” Sibley said on in February 2025. “As the collaborator for these pharmacies, I get every person’s sheet.”

“They’re from every state,” she said. “They’re from Canada. They’re from Europe.”

Sibley did not respond to requests for comment.

ºÚÁϳԹÏÍø News has independently confirmed that Sibley signed agreements with at least 10 pharmacies. The agreements say pharmacists shall dispense ivermectin only in Tennessee, where Sibley is licensed, although one of those pharmacies said friends and family in Tennessee can “.”

Hughey, the Tennessee pharmacist, said Sibley had prescribing agreements ready to go when the law was enacted. He credited her with advancing ivermectin sales throughout the state.

“Had Dr. Sibley not stepped in and really pushed forward, there’s no telling how hard it would have been,” Hughey said. “It would have been a lot less widespread.”

Sibley also works with Children’s Health Defense, the Kennedy-founded group that has become one of the nation’s most influential anti-vaccine organizations. In podcasts, Sibley has referred to the covid vaccine as a “” and “ that’s ever been produced.”

Separately, before Tennessee legislators in 2024 about an alleged plot to change the weather and block sunlight. The New York Times then included her .

Sibley has said in podcast interviews that she was told by God to treat covid patients. She said she has advocated for ivermectin ever since.

“God agrees with what I’m doing,” Sibley said in 2023 on the podcast , which is recorded in Nashville. “I wake up every day and I say: ‘Yes, sir. I’m reporting to duty.’”

In legislative and government hearings throughout 2022, Sibley testified that she had treated around 4,400 people with ivermectin, including some Tennessee lawmakers, all without taking payment. Sibley described ivermectin as “a wonder drug” and said making it more available “.”

“I’ve taken bucketloads of this stuff myself,” Sibley said . “I feel like I’ve been a good test subject.”

Sibley has said she dispenses ivermectin using treatment guidelines developed by Paul Marik, who in 2020 co-founded the Independent Medical Alliance, a medical group that has promoted ivermectin as an effective treatment for , , , and .

Some Tennessee pharmacies now follow those protocols, too. The protocols recommend patients take 1.5 to five times as much ivermectin as is normally prescribed to treat parasites, with the dose taken for days or weeks instead of just once.

Marik and other ivermectin proponents sued the FDA in 2022 after it discouraged the use of the drug for covid by tweeting: “You are not a horse. You are not a cow. Seriously, y’all. Stop it.” The agency settled the lawsuit with no admission of wrongdoing and deleted the viral tweet in 2024.

The American Board of Internal Medicine has revoked Sibley’s and Marik’s board certifications but declined to explain why. Sibley still holds a Tennessee medical license; Marik is based in Virginia and is not licensed. Sibley and Marik the internal medicine board’s actions.

In response to questions from ºÚÁϳԹÏÍø News, Marik, through an Independent Medical Alliance spokesperson, said medical science benefits from “open discussion of ideas and treatments.”

“Many independent doctors have reported that treatments like Ivermectin, in conjunction with traditional treatments, are showing promise. These ideas should be explored,” alliance spokesperson Lynne Kristensen said in an emailed statement.

Marik testified in favor of Tennessee’s ivermectin legislation in 2022, telling lawmakers that it is necessary because people would otherwise buy animal-grade ivermectin in stronger dosages meant for livestock.

“They’re buying ivermectin from farm stores. We don’t know the quality,” Marik said at a March 2022 legislative hearing on the Tennessee bill. “So this would prevent that from happening.”

Tennessee Does Not Track Its Ivermectin Market

Arkansas, Idaho, Louisiana, and Texas enacted similar laws in 2025, and legislation that makes ivermectin available without the need for a doctor visit has been introduced or debated in at least 24 other states, according to a ºÚÁϳԹÏÍø News analysis. That means half the country could be following Tennessee down an unlit path, because no one knows the full scope of its ivermectin market.

Tennessee does not effectively track which pharmacies offer ivermectin this way, and the state government has been unable to produce some foundational documents that pharmacies are legally required to file before they sell the drug, according to a ºÚÁϳԹÏÍø News investigation.

Doctors and pharmacies are the Tennessee Department of Health when they sign agreements that allow ivermectin to be dispensed without patient-specific prescriptions, although it is not clear whether this consistently occurs.

In response to a ºÚÁϳԹÏÍø News public records request for those ivermectin notifications filed by pharmacies, the agency over three months produced records from only 12 pharmacies, half of which have agreements with Sibley. The agency said it did not locate records related to at least 13 others that ºÚÁϳԹÏÍø News has identified as selling ivermectin without requiring individual prescriptions.

Department of Health spokesperson Dean Flener said the agency would not answer questions about whether or how it regulates ivermectin or the pharmacies that distribute it.

Tennessee has said it does not track how much of the drug is sold in the state, and the amount is not well captured by federal or insurance data sources. That’s because the drug is often sold at compounding pharmacies, which make customized medications that are not FDA-approved and rarely covered by insurance. Drugmakers and wholesalers did not respond to questions about how much ivermectin they supply to pharmacies in the state.

Even the Independent Medical Alliance, one of ivermectin’s , says it doesn’t know how much is flowing through Tennessee.

States are getting pressure from clinicians ”who have had success with the use of ivermectin,” said IMA President Joseph Varon, a physician based in Houston. “That’s what happened in Texas, and that’s what happened in Tennessee.”

‘An Unproven, Potentially Unsafe Drug’

Once signed by Tennessee Gov. Bill Lee, the state’s ivermectin law took effect immediately — even before the state’s physician and pharmacy licensing boards created rules to guide the process, which Tennessee law also requires. 

Some board members were shocked.

“We’re talking about an unproven, potentially unsafe drug,” Shant Garabedian, a doctor on the state’s Board of Osteopathic Examination, said of off-label ivermectin use during a . “It’s already law. Somehow it passes without our sort of input.”

In meetings that followed, at least five members of Tennessee’s medical boards voiced concerns about the law beyond safety and efficacy. Some said pharmacists could overcharge for a drug that normally costs pennies per pill. Some worried that a loosely regulated, cash-based ivermectin market might attract shady characters, especially because the law also shields prescribers from ivermectin-related civil lawsuits.

“This involves no clinical engagement,” Melanie Blake, then-president of the Board of Medical Examiners, said during a . “If they’re exempt from liability as well, I hate to think of things that individuals could do just to make money, but this would be one.” 

The boards eventually enacted regulations affirming that ivermectin could be dispensed without any diagnosis. Board members said the law left them no choice.

“This is more of a situation where, legally, the legislature has decided for us,” John McGraw, another board member, said in a . “This has sort of tied our hands in a lot of ways.”

The first known sale under the new law occurred in Sibley’s home of Johnson City, a city of about 74,000 people in northeastern Tennessee. According to a , Sibley entered into a collaborative agreement with pharmacist Josh Harrison at The Compounding Lab, which dispenses drugs for people and animals. 

The first customer was Bernadette Pajer, an anti-vaccine activist who has worked with Children’s Health Defense. In a of the Nashville podcast Rebunked With Scott Armstrong, Pajer said Sibley was a medical adviser for the group and described the first ivermectin sale.

“On that day, she was the doctor, he was the pharmacist making the sale, and I was the first customer,” Pajer said. “So that was pretty cool.”

Ivermectin pharmacies have spread across the state. In the suburbs of Nashville, Roman Pharmacy advertises ivermectin on at least four billboards along Interstate 65, and is mostly focused on the drug. Outside Knoxville, allows customers to order ivermectin for multiple sclerosis and Parkinson’s disease, or “to use it to detoxify.”

Roman Pharmacy did not respond to interview requests. Fresh Pharmacy declined an interview.

In Chattanooga, the Medicine Counter pharmacy says on its website that ivermectin should be taken “only as prescribed by your healthcare provider.” And yet the pharmacy sells some of Tennessee’s available without a prescription from a doctor — up to 21 times as strong as a standard tablet, for nearly $19 per pill — according to the ºÚÁϳԹÏÍø News analysis.

Himanshu Patel, Medicine Counter’s head pharmacist, declined to be interviewed. He said in an email that the pharmacy operates in a “very competitive market” and that its strongest pills were below the maximum dose for humans evaluated by the FDA for safety purposes.

And then there is Compound Rx, which, in addition to selling ivermectin in its store, has built a website in preparation to ship nationwide. The site, which is in “test mode,” cannot currently make any sales. It also asks customers how they heard about the pharmacy, with a dropdown menu of answers that features right-wing figures such as Donald Trump Jr., Steve Bannon, Laura Ingraham, and Kevin Sorbo.

Who is not listed as an option? Your doctor.

Hughey, the Compound Rx pharmacist, said he wasn’t involved with the website, which he said may never launch.

The highly concentrated pills are a concern for Tennessee state Sen. Richard Briggs, who worries lawmakers have created a “dangerous” ivermectin market rife with “misleading advertising” about what the drug can actually do.

Briggs, who is a surgeon and the only Republican who voted against the ivermectin bill in 2022, said he planned to introduce legislation to rein in the sale of ivermectin when lawmakers reconvene in 2027.

“But it may be a hard sell, because with the anti-vaxxers and some of these other folks,” Briggs said. “We don’t base a lot of things that we do on science, data, or facts. To a lot of folks in the legislature, the facts are just an inconvenience.”

‘Enough Trouble With Ivermectin’

Lawmakers in at least seven states have considered ivermectin legislation this year, including Alabama, Florida, Oklahoma, and South Carolina. If enacted, these bills would allow people to obtain ivermectin without an individual prescription, like in Tennessee, or make it available over the counter.

Kennedy praised such legislation at an event in Texas last August.

“I think it’s a really good bill,” he said of Texas’ ivermectin legislation, according to . “I think Americans should have the choice.”

But proponents have hit roadblocks. A Utah bill failed to advance out of the state House this year. In Oklahoma, some lawmakers have put up a fight.

“I’m a scientific person. I need to see some research and some data that shows what we’re treating,” Oklahoma state Rep. Cynthia Roe, a Republican and nurse practitioner who opposes the state’s ivermectin bill, said in an interview. “And God forbid somebody start giving it to their kid.”

Back in Tennessee, one of the medical boards that was alarmed when the law was enacted in 2022 started to distance itself from ivermectin altogether.

In January, the Board of Medical Examiners grappled with how to punish Ricky Lee Jackson, a doctor who was licensed in Tennessee and had been sanctioned and fined by Washington state’s medical commission. The Tennessee board normally mirrors punishments from other states without hesitation. But the Washington case centered on Jackson prescribing ivermectin for covid, which in Tennessee no longer required a patient to see a doctor.

After a debate, the board voted to reprimand Jackson — but told its staff to ensure the public record made .

“This board has been in enough trouble with ivermectin,” member Keith Anderson said, according to a . “Maybe we ought to just leave that out.”

journalist Blake Farmer and reporter Adam Friedman contributed to this report.

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

The certified professional midwife pressed the button on a handheld Doppler ultrasound machine she placed on Collins’ belly. “That’s her heartbeat,” she said to Collins’ 3-year-old daughter, who sat beside her mom as a whooshing sound filled the room. “I think Mommy’s baby’s right here.”

The midwife is not licensed as a nurse. In Georgia, that makes what she’s doing illegal. ºÚÁϳԹÏÍø News agreed not to identify her by name.

Georgia is one of seven states where delivering babies can earn non-nurse midwives, at minimum, a cease-and-desist letter requiring them to end their careers. In North Carolina, it’s a . In New York, .

Meanwhile, demand for their services is increasing. Intended home births rose by 42% nationally from 2020 to 2024, according to the National Center for Health Statistics, and those births are often overseen by certified professional midwives. In Georgia, they rose by 72%. Midwives who assist with home births typically see clients from prenatal appointments through after childbirth, providing more postpartum checkups than most new mothers receive.

Home births make up nationwide. In the eight states where they were most common in 2024 — Hawai‘i, Idaho, Montana, Pennsylvania, Utah, Vermont, Wisconsin, and Wyoming— they made up 3-5% of births.

As that number rises, midwifery advocates said, regulating the practice with licenses would allow home births to be safer. Free birth — without the help of a skilled professional before or after labor — can be .

“People are going to keep having their babies at home, and they deserve a trained provider,” said Missi Burgess, president of the Georgia chapter of the National Association of Certified Professional Midwives.

For decades, professional midwives have been advocating for laws to legalize and regulate their profession. More lawmakers have supported those efforts in the past 15 years, with 36 states and Washington, D.C., allowing them to get licensed to deliver babies. Last year, a wave of state lawmakers — in Georgia, Mississippi, Nebraska, New York, North Carolina, Ohio, and West Virginia — tried to add their states to the list, although none of their bills has become law.

Certified professional midwives deliver babies in homes or birth centers. Rather than attend nursing school — which many can’t afford — they earn a nationally recognized certificate by attending at least 55 births and demonstrating their knowledge. Nurse-midwives more often deliver babies in hospitals or clinics than in patients’ homes.

Some hospitals and doctors oppose midwife licensing proposals without certain guardrails. The American College of Obstetricians and Gynecologists showing that infants are twice as likely to die during planned births at home or in birth centers as in hospitals, while acknowledging that the data remains limited. It doesn’t account for several factors, including who assisted in the birth.

Still, prominent stories of home births with midwives gone wrong contribute to the skepticism around licensing laws. In 2023, The Washington Post of a licensed midwife who pleaded guilty to felonies in Virginia after an infant death and assisted with home births in Maryland in which two more babies died.

In Mississippi, a bill that would have regulated and licensed professional midwives died after a state senator blocked a vote in the committee he chaired. Democratic Sen. Hob Bryan he didn’t “wish to encourage that activity.”

But midwives said they have a sympathetic ear now in the Trump administration, with its Make America Healthy Again movement. Cassaundra Jah, executive director of the , said she has been on calls with midwifery groups pushing for the Department of Health and Human Services to provide legal protections for them, and some midwives have been in contact with the agency.

HHS spokesperson Emily Hilliard declined to comment on policy proposals but told ºÚÁϳԹÏÍø News that the administration “regularly meets with a wide range of stakeholders to hear input from the American public.”

Hospitals Want Guardrails

Advocates for the license say allowing certified professional midwives to provide care would help address a shortage of maternity care providers.

“Some midwives are leaving our state,” Rep. , a chiropractor who sponsored the Georgia bill, said during a hearing on the measure last year. “They’re being forced to quit. And now we have a shortage of these providers to take care of our pregnant moms.”

A by the March of Dimes found that 35% of counties in the U.S. have no birthing facility or obstetric provider. Georgia has the 13th-highest maternal mortality rate in the nation, according to the .

After the U.S. Supreme Court’s reversal of Roe v. Wade in 2022 eliminated federal protection for abortion, six-week abortion bans prompted more providers to leave states such as Georgia and Texas. Idaho lost by December 2024, two years after its abortion ban took effect. Doctors who left states with such laws cited fear of prosecution and an inability to provide the standard of care.

Of the 13 states with the fewest maternity care providers per capita, nine had a full or six-week abortion ban as of 2024, .

Licensing midwives won’t solve the larger maternity care shortage, but it’s a first step, said , a professor of midwifery and the principal investigator at the Birth Place Lab at the University of British Columbia. Certified professional midwives currently attend only about 1.4% of births in the U.S., according to federal data.

The would have granted certified professional midwives licenses through a state board, allowed them to administer lifesaving medications, and required their services to be covered by private insurance and Medicaid. They would not have needed a physician to supervise them. Without that mandate, giving birth outside of a hospital could be an option for more people.

But the Georgia Department of Public Health and the Georgia Hospital Association opposed the licensing bill, primarily because they wanted more regulations than the midwives were willing to accept — including physician supervision.

Anna Adams, a spokesperson for the hospital association, suggested establishing transfer agreements that required all women planning to have a home birth to register at the hospital first. When a laboring woman is transferred to a hospital, which happens in about , “we have no prior knowledge of this patient,” Adams said. “It’s a tricky situation to inherit when you’re trying to save the mother and the baby without any background.”

Georgia midwives said they planned to bring the licensing proposal back next year.

In early April, three midwives for restricting their ability to practice, arguing that the rules violate the state constitution.

“Every pregnant person should be able to choose where they give birth and with whom,” said Jamarah Amani, a plaintiff in the lawsuit and co-founder of the .

Black women are three times as likely to die during or after childbirth as white pregnant patients. In January, a prominent Black nurse-midwife in South Carolina died after unexpected complications from childbirth.

Today, midwives and their clients are predominantly white, but the home birth rate among Black women rose 42% nationally from 2019 to 2024, according to the Centers for Disease Control and Prevention.

“Ultimately the system has failed us as a people,” said Tina Braimah, a Black nurse-midwife who attended home births for a decade. She then opened a in North Carolina, allowing her to see more clients from a variety of backgrounds. “When the system consistently fails you, you look for other options.”

Becoming Part of the System

Many maternal health researchers say mothers fare better when midwives are a key part of the health system. In 2018, researchers at the Birth Place Lab published a study of all 50 states showing that integrating midwives was associated with better outcomes for moms and babies, including lower rates of infant deaths. Integration involves collaboration among all kinds of midwives and doctors so that patients can easily transfer to or from a hospital. It also involves giving all midwives the authority to practice the full range of their skills, including prescribing lifesaving medication.

A by the National Academies of Sciences, Engineering, and Medicine states that data from other countries suggests home births can be as safe as hospital births for low-risk women who are part of an integrated, regulated system.

Washington state has one of the highest rates of in the U.S., according to the . Its home birth rate is consistently higher than the national rate, while its remains lower than the national average.

One in 5 women report being mistreated during maternity care, according to a . Pregnant patients tend to be more satisfied when midwives lead their care, whether at a hospital, a birth center, or home.

Hannah Haynes gave birth to her first three children in a hospital near her home in Jefferson, Georgia. During the third labor, which was induced, she received a catheter that led to a urinary tract infection and then sepsis, a life-threatening condition. She was separated from her newborn for four days while receiving treatment.

“Something has to change,” Haynes said.

Haynes regrets electing to get induced when it wasn’t medically necessary. She gave birth to her fourth child at home, with the help of a certified professional midwife she trusted. She’s pregnant with her fifth and plans to use the same midwife. She said she won’t deliver at a hospital again.

“I was a little nervous,” Haynes said, because she had heard rumors that midwives didn’t know what they were doing. But after meeting the midwife, “I just felt so confident in her.”

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

LISTEN: Quashing innovation or risking a patient’s health? Lauren Sausser told WAMU’s Health Hub on April 15 why the White House and some states are at odds over how to regulate AI in health care.

Speed, efficiency, and lower costs. Those are the traits artificial intelligence supporters celebrate. But the same qualities worry physicians who fear the technology could lead to insurance denials with humans left out of the loop.

With scant federal regulation, states are left to shape the rules on AI in health care. For residents in the Washington, D.C., metropolitan area, a divide is playing out on opposite sides of the Potomac River. Maryland and Virginia have taken very different approaches to regulating AI in health insurance.

ºÚÁϳԹÏÍø News correspondent Lauren Sausser joined WAMU’s Health Hub on April 15 to explain why where you live may determine how much of a role AI plays in your coverage.

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

The federal government doesn’t track how many children have entered foster care because of immigration enforcement actions, leaving it unclear how often it happens. In Oregon, as of February two children had been placed in foster care after being separated from their parents in immigration detention cases, according to Jake Sunderland, a spokesperson for the Oregon Department of Human Services.

“Before fall 2025, this simply had never happened before,” Sunderland said.

As of mid-February, nearly by Immigration and Customs Enforcement. The record 73,000 people in detention in January represented an compared with one year before. According to , parents of 11,000 children who are U.S. citizens were detained from the beginning of Trump’s term through August.

The news outlet NOTUS that at least 32 children of detained or deported parents had been placed in foster care in seven states.

Sandy Santana, executive director of Children’s Rights, a legal advocacy organization, said he thinks the actual number is much higher.

“That, to us, seems really, really low,” he said.

Separation from a parent is deeply traumatic for children and can lead to , including post-traumatic stress disorder. Prolonged, intense stress can lead to more-frequent infections in children and developmental issues. That “toxic stress” is also associated with responsible for learning and memory, according to KFF.

, and amended existing laws during Trump’s first term to allow guardians to be granted temporary parental rights for immigration enforcement reasons. Now the enforcement surge that began after Trump returned to office last year has prompted a new wave of state responses.

In New Jersey, lawmakers are considering to amend a state law that allows parents to nominate standby, or temporary, guardians in the cases of death, incapacity, or debilitation. The bill would add separation due to federal immigration enforcement as another allowable reason.

Nevada and California passed laws last year to protect families separated by immigration enforcement actions. California’s law, called the , allows parents to nominate guardians and share custodial rights, instead of having them suspended, while they’re detained. They regain their full parental rights if they are released and are able to reunite with their children.

There are significant legal barriers to reunification once a child is placed in state custody, said Juan Guzman, director of children’s court and guardianship at the Alliance for Children’s Rights, a legal advocacy organization in Los Angeles.

If a parent’s child is placed in foster care and the parent cannot participate in required court proceedings because they are in detention or have been deported, it’s less likely they will be able to reunite with their child, Guzman said.

are U.S. citizens who live with a parent or family member who does not have legal immigration status, according to research from the Brookings Institution, a Washington, D.C.-based think tank. Within that group, 2.6 million children have two parents lacking legal status.

Santana said he expects the number of family separation cases to grow as the Trump administration continues its immigration enforcement campaign, putting more children at risk of being placed in foster care.

the agency to make efforts to facilitate detained parents’ participation in family court, child welfare, or guardianship proceedings, but Santana said it’s uncertain whether ICE is complying with those rules.

ICE officials did not respond to requests for comment for this report.

Before the change in California’s law, the only way a parent could share custodial rights with another guardian was if the parent was terminally ill, Guzman said.

If parents create a preparedness plan and identify an individual to assume guardianship of their children, the state child welfare agency can begin the process of placing the children with that individual without opening a formal foster care case, he added.

While Nevada lawmakers expanded an existing guardianship law last year to include immigration enforcement, the measure requires the parents to take the additional step of filing notarized paperwork with the secretary of state’s office, said Cristian Gonzalez-Perez, an attorney at Make the Road Nevada, a nonprofit that provides resources to immigrant communities.

Gonzalez-Perez said some immigrants are still hesitant to fill out government forms, out of fear that ICE might access their information and target them. He reassures community members that the state forms are secure and can be accessed only by hospitals and courts.

The Trump administration has taken through the Centers for Medicare & Medicaid Services, the IRS, the Supplemental Nutrition Assistance Program, the Department of Housing and Urban Development, and other entities.

Gonzalez-Perez and Guzman said that not enough immigrant parents know their rights. Nominating a temporary guardian and creating a plan for their families is one way they can prevent feelings of helplessness, Gonzalez-Perez said.

“Folks don’t want to talk about it, right?” Guzman said. “The parent having to speak to a child about the possibility of separation, it’s scary. It’s not something anybody wants to do.”

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

“I feel like I’m suffocating inside this shelter, trapped with no way out,” Carlos’ son said, according to one of the teens’ attorneys, when asked to describe how he felt after months at the Houston-area facility. “Every day, the same routine. Every day, feeling stuck. It makes me feel hopeless and terrified.”

During daily video calls, Carlos, who had temporary protected status, urged the siblings to be patient, to trust the process. Federal officials had vetted Carlos before he could be granted custody and told him his case was complete. He believed he would soon be back with his children, who, like him, had sought refuge from political violence in Venezuela.  

An immigration officer called Carlos on a Friday and asked him to attend a meeting at an ICE office the following Monday to discuss reunification with his children. Once Carlos arrived, officers tried to force him to sign documents he said he didn’t understand. When he refused, they stripped off his clothes, seized his ID and belongings, and chained him by the neck, waist, and legs.

“They tricked me,” Carlos said in a phone call from an immigration detention center in El Paso, Texas, where he was held for several months. “They used my children to grab me,” he said.  

In reporting on the family’s story, ºÚÁϳԹÏÍø News reviewed court documents, spoke with the family’s immigration attorneys, interviewed Carlos, and reviewed statements from his children, translated from Spanish. Carlos is a pseudonym, being used at the request of attorneys concerned that speaking out could jeopardize Carlos’ immigration case or further delay his reunion with his family.

Using Children to Arrest Parents

Since 2003, the Department of Health and Human Services’ Office of Refugee Resettlement has cared for immigrant children under 18 who arrive in the country without their parents, often fleeing violence, abuse, or trafficking. The office, which in February had more than 2,300 children in shelters or with foster families across the country, is supposed to promptly release them to vetted caregivers, typically parents or other family members already living in the country.

Congress placed this responsibility with the health agency over 20 years ago to prioritize the well-being of unaccompanied children and separate their care from immigration enforcement priorities.

Now the second Trump administration is using migrant children held by the resettlement office to lure their parents, such as Carlos, whether or not they have a criminal record. A ºÚÁϳԹÏÍø News investigation found the resettlement office, , coordinates with the Department of Homeland Security to arrest people seeking custody of migrant children.

Arrest documents show Homeland Security Investigations, the arm of the agency that normally focuses on organized criminals and traffickers, will interview parents or other caregivers then arrest them if they are in the country illegally. Before Donald Trump returned to the White House, the resettlement office prohibited data sharing and collaboration with immigration enforcement, and it did not deny caregivers custody of children solely because of their immigration status. Those last year.

It’s unclear exactly how many caregivers have been baited into arrest. LAist indicating more than 100 have been arrested while trying to get their kids out of detention, but ºÚÁϳԹÏÍø News could not independently verify that number with federal agencies.

Since February, the Department of Health and Human Services, Department of Homeland Security, and Justice Department have not responded to questions about caregiver arrests. Prior to leaving DHS last month, Assistant Secretary Tricia McLaughlin said the administration protects children from being released to people who shouldn’t care for them. Andrew Nixon, an HHS spokesperson, referred questions related to immigration enforcement to DHS.

At the same time, the resettlement office has that make it harder for caregivers to gain custody of unaccompanied children. These include narrowing the range of accepted documents, requiring fingerprint-based background checks for every adult in the home and backup caregivers, and requiring in-person appointments to verify identification documents, sometimes with ICE agents present. The requirements keep “children safe from traffickers and other bad, dangerous people,” Nixon said.

As of January, the agency had detained at least 300 children already placed with vetted sponsors and asked their caregivers to reapply, according to the National Center for Youth Law and the Democracy Forward Foundation. The advocacy groups filed calling these actions “a quieter, new form of family separation.” 

Reverse Separation

Dulce, a Guatemalan mother in Virginia, said her 8-year-old son was sent to a government shelter after he was detained during a traffic stop last summer while visiting family members in a different state.

At first, Dulce expected to get her son back within days — she had passed the government’s sponsorship requirements in 2024 and was reunited with him three weeks after he first crossed the border. But resettlement agency officials asked her to repeat the entire process and resubmit documents, Dulce said. It took eight months to get him back.

Dulce is a pseudonym being used at her request because she fears speaking out could get her deported.

At one point, Dulce was told to attend an interview at an ICE office to show her identification as part of the process of reuniting with her son. She refused out of fear that she too might be detained, because she doesn’t have legal status. She believes ICE agents visited her home at one point.

“I stopped going home,” Dulce said. “I lived with some of my friends for days.”

Even though she lived just 45 minutes away, Dulce was allowed to visit her son only twice a month.

Until recently, most unaccompanied children landed in government custody after being detained at the border. But border crossings started to fall in 2024, and the number of people coming to the U.S. has dropped precipitously in President Trump’s second term.

Now, hundreds of kids have been taken to government shelters after being swept up inside the country, often during immigration raids or traffic stops, according to the advocates’ lawsuit. Many were already living with relatives, including guardians already vetted by the resettlement agency.

Releases have grinded nearly to a halt. According to the resettlement office, children in its custody stayed in government shelters or foster care for an average of one month in 2024. As of February, that had jumped to more than half a year.

When children do get released, it’s often only after their attorneys file a lawsuit in federal court challenging their detention as unconstitutional.

Authorities released Dulce’s son to her in February after the boy’s attorneys filed such a petition. Dulce said she’s relieved to have him back but still anxious that ICE could show up at their house.

Immigrants at Risk

During Trump’s first term, his administration was criticized for of children who had been released from custody. President Joe Biden was blamed for how his administration processed a surge of unaccompanied children that peaked in 2021 with about 22,000 in the resettlement office’s custody. Though most children were placed with legitimate sponsors, some were placed with people who hadn’t cleared , putting them at risk of .

The Trump administration says it is checking on those , and the Justice Department has prosecuted . On March 1, Homeland Security Secretary Kristi Noem, who is set to leave her role at the , touted a , including the resettlement office, that DHS said had tracked down 145,000 unaccompanied children who had been placed with caregivers during Biden’s term.

Yet internal HHS reports about that initiative obtained by ºÚÁϳԹÏÍø News show that nearly 11,800 of those migrant children and nearly 500 of their caregivers were arrested as of Jan. 29. Only 125 of those migrant children and 55 of those caregivers were arrested for alleged criminal activity, suggesting the majority were for immigration violations.

HHS referred questions about the figures in the reports to DHS, which did not respond to requests for comment about the data. However, Michelle Brané, who was a DHS official in the Biden administration, said the figures show that most of the arrests were to detain and deport migrants. Previously, the administration targeted parents and caregivers who had paid for children to cross the border, trying to levy smuggling charges against them.

“They have really dropped that pretense in a lot of ways, and they are going for anyone openly,” Brané said. “These numbers clearly reflect that this is not about public safety or about safety of the children.”

Case on Hold

Carlos left Venezuela in 2022 because of death threats and, like thousands of others fleeing that country, was granted what’s called temporary protected status under the Biden administration. That protection for most Venezuelans by the Trump administration.

In January 2025, days before Trump was sworn in for his second term, Carlos’ children crossed the border from Mexico to the U.S., turned themselves over to border authorities, and were immediately placed in the resettlement agency’s custody. Carlos spent months submitting paperwork to reunite with them. He said he’s their only parent, because their mother left when they were toddlers.  

Officials visited his home twice and determined he was fit to care for them, according to court documents petitioning for his release from detention. He passed DNA testing, proving he’s the biological father, one of his attorneys said. His arrest documents show he has “no criminal history.” In July, Carlos was told his reunification case was complete and being sent for approval. But then, with little explanation, the case was put on hold.

Before his arrest by ICE, Carlos said, he drove 14 hours each way from his home to visit his children. Once there, he could see them for only one hour. When he was in detention, he said, he spoke to them about every two weeks in quick, monitored phone calls.

He’s trying to stay hopeful, but it’s hard.

According to documents completed by ICE officers during his arrest and submitted in his court case, Carlos was arrested under an initiative called Operation Guardian Trace, which requires immigration officers to detain potential caregivers if they are in the country without legal authorization and recommend that they be deported.

“This operation is designed to force parents to make an impossible choice between reuniting with their children and seeking safety,” said one of Carlos’ attorneys, Chiqui Sanchez Kennedy of the Galveston-Houston Immigrant Representation Project, a nonprofit that helps low-income immigrants.

‘I’m Going to Wait’

In March, a federal judge said officials had unlawfully detained Carlos and he was released on bond.

But his children still face an uncertain future for now. Government shelters often lack sufficient resources, , and social workers say lengthy stays in these facilities can result in additional trauma.

“Not only is it bad, full stop, but the longer you’re there, the worse it gets,” said Jonathan Beier, associate director of research and evaluation for the Acacia Center for Justice’s Unaccompanied Children Program, which coordinates legal services for unaccompanied minors.

Carlos’ children could also be sent back to the country they fled. Because of his detention, Carlos will have to redo much of the process to reunite with them, according to an attorney for the children, Alexa Sendukas, also with the Galveston-Houston Immigrant Representation Project.

In statements shared through Sendukas, Carlos’ daughter said she no longer wants to be around others and spends most of the time in her room. His son, now 15, described having panic attacks and feeling that he’s missing out on life, whether it’s the opportunities he longs for — to learn English, to study science — or watching basketball with his family.

“I remember when I first arrived at this shelter, I was so hopeful and had faith that I would be reunited with my dad soon,” he said.

Carlos’ daughter spent the day crying in bed when the siblings learned their father had been detained. For days, they didn’t know where he was. Now, they fear the only way out is through adoption or foster care.

“I am afraid,” she said. “I’m going to wait for my dad forever.”

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

Raven’s case reveals a little-known gap in the U.S. donation system: There is no clear, nationally binding way to opt out — or to ensure a later “no” overrides an earlier “yes” in a different state.

This gap, along with a range of other issues related to the organ procurement system, has become a point of bipartisan congressional concern. Late last year, the House Ways and Means subcommittee on oversight examining what members described as shortcomings, including alleged consent failures.

The panel’s scrutiny of organ procurement organizations, or OPOs, and their consent practices is a first step toward a more meaningful accountability plan that could help maintain trust across the system, according to some committee staff members.

The trust in our organ procurement and transplant system “has been eroded,” said Rep. Terri Sewell of Alabama, the panel’s senior Democrat, calling for stronger transparency and oversight to rebuild public confidence.

“Respect for autonomy — our ability to make our own decisions (self-determination) — allows for both ‘yes’ and ‘no’ decisions and for changing one’s mind,” Margaret McLean, a bioethicist at Santa Clara University, said in an email.

“Medical decision-making is not well served in a context of ambiguity,” she said.

And if a donor revokes consent, she added, “revocation by that person should carry the same ethical and procedural weight as the initial authorization, perhaps more.”

Raven Kinser Changed Her Mind

Raven was 25 when she died. Her parents, Jeff and Jaime Kinser, were at home in Michigan when they received the phone call that shattered their world. They drove through the night to the Newport News hospital, where they learned Raven’s disposition had been referred to LifeNet Health, the region’s federally designated OPO. LifeNet a failing OPO by the Centers for Medicare & Medicaid Services, meaning it doesn’t meet the government’s standards for how well it finds donors and recovers usable organs for transplant compared with other organizations.

Under federal law, hospitals are required to refer deaths and imminent deaths to OPOs, which take responsibility for donation-related decisions and discussions.

OPOs occupy a hybrid position in the health care system, as private nonprofit entities that hold exclusive, federally authorized contracts to recover organs within defined regions. They are regulated by CMS and overseen by the Health Resources and Services Administration, but that oversight occurs primarily through certification standards, performance metrics, and periodic audits rather than routine public disclosure requirements. With donor registries largely managed at the state level and no unified federal reporting requirement for removals, comprehensive national data on revocations is elusive.

OPOs are meant to separate bedside care from organ procurement decisions — to help prevent conflicts of interest and preserve the trust that decisions about life-sustaining treatment are made solely in the dying patient’s interest. But the , leaving families unsure who is in control if and when conflicts arise.

The Kinsers, for instance, felt their daughter would not have wanted to go through the donation process, but, at the time, had no evidence. Jaime remembers telling her husband that Raven would have been mad at them for letting it happen. In an effort to stop it, Jaime inquired about whether she would be asked to sign a consent form. But a LifeNet staff member told her that wasn’t an option because donation was Raven’s “living will,” Jaime said. Meanwhile, Raven’s parents said, her personal effects, including her Virginia driver’s license, which bore no donor designation, had not yet been turned over to the family, leaving them no meaningful way to challenge LifeNet’s determination in real time.

Jaime struggled with this outcome, even mentioning in Raven’s obituary that she was an organ donor. “How would you try to make peace with something that you felt was so wrong but had no proof?” Jaime said.

Two months passed before the Kinsers gained possession of the license, which, as they had expected, showed that Raven had not opted to be an organ donor.

According to the Kinsers, LifeNet staff told them that Raven’s status as a registered donor was established by her designation on her older Michigan license.

An emailed statement attributed to Douglas Wilson, LifeNet executive vice president, said the OPO follows federal law on organ donation, the , and queries applicable state donor registries, relying on time stamps and governing law to determine the , legally valid expression of intent. Under that framework, a prior donor authorization remains enforceable unless a valid revocation is recorded in the regional OPO’s donor registry.

Because of privacy laws, Wilson said, LifeNet could not comment on the specifics of any individual case.

Raven Kinser’s choice not to be a donor when she applied for a Virginia license in July 2024 was not reflected in the registry LifeNet consulted, according to her parents, who said that is what the organization told them. According to Lara Malbon, executive director of Donate Life Virginia, which manages the state’s organ donor registry, if someone changes their donor status while completing a Virginia driver’s license or ID transaction, “that information is sent to our registry, and the registry is updated daily to reflect those changes.” Malbon also said Virginia’s registry includes only people who have “affirmatively said ‘yes’ to becoming an organ, eye, and tissue donor, and it retains records solely for those who have made that decision.”

The Kinsers said they were never told why Raven’s Virginia DMV record was insufficient, or how an older yes from Michigan could outweigh a newer no in Virginia.

In December, the Kinsers filed a complaint with the Health Resources and Services Administration, urging federal regulators to investigate LifeNet’s actions and require OPOs to provide families with documented proof of the donor’s current status at the time of referral. They also called for OPOs, which operate as federally designated regional monopolies but are structured as private nonprofits, to be made subject to public records laws.

When Opting Out Doesn’t Stick

Such confusion is not unique to the Kinser family. It is a consequence of the organ donation consent process in the United States.

“I have also wondered that: why there’s not just one” registry for organ donation, Jaime said. If you go to get a firearm, you have one federal registry, she said.

Here’s how the system works: Americans typically register their organ donation intentions when they apply for driver’s licenses through state DMVs, and that decision remains governed largely by state law. That has led to 50 different sets of rules and very little federal regulation of what has become an in the U.S.

In some states, a donor checkbox is a binding legal document. In other states, the same choice may have different rules about when it takes effect, what it covers, and how it can be revoked.

Those differences can be big. State rules determine whether a person’s “gift” is limited to transplantation or also includes research and education. They determine whether the donation authorization includes tissue. And they can determine what counts as a valid revocation and when it is legally recognized.

Because of the system’s fragmentation, though, signals can cross when someone changes their mind, like Raven; it’s not always reflected from one state system to another.

Under state versions of the Uniform Anatomical Gift Act, a donor’s most recent legally valid expression of intent is meant to control.

“Personal autonomy is paramount to everything,” said Adam Schiavi, a neurointensivist who studies end-of-life decision-making. “If I say I want to be a donor, or if I say I don’t want to be a donor, that has to take precedence over everything else.”

But states differ in how revocation must be recorded and which registry is considered authoritative if someone has lived in more than one state. Those inconsistencies can create uncertainty when records conflict across jurisdictions.

“It has to be the most recent expression, not the most recent yes,” Schiavi said.

In Michigan, a change to someone’s donor status is reflected immediately in the secretary of state’s system, but only affirmative “yes” registrations appear in the registry. Removal information remains in internal motor vehicle records. In Virginia, the state registry includes only those who have affirmatively said “yes,” retaining records solely of donors, creating potential gaps if someone believes a DMV change alone is sufficient.

Elsewhere, processes and volumes differ sharply. New Mexico updates driver records in real time but does not transmit status changes to its donor registry. Instead, donor services receive restricted search access. The state logged nearly 15,000 removals in late 2021 and almost 30,000 in 2022. Florida, which maintains formal removal records through weekly DMV data files, reported 356,161 removals in 2020, more than 1.5 million in 2023, and over 1.2 million in 2025. Kentucky processed 847,371 donor registrations from 2020 to 2025, but only 16,043 icon removals, with registry withdrawal handled separately. In 2025, more than 570,000 Texans opted into the registry, while over 31,000 individuals requested removal.

According to a federal official who asked not to be identified for fear of professional repercussions, OPOs have been highly effective at lobbying states to broaden the definition of consent and authorization — shaping how those terms are applied, whether those statuses must be renewed, and how easy or difficult it is for someone to opt out.

In subsequent correspondence with federal officials, the Kinsers have urged reforms to prevent OPOs from relying on older registry entries when a more recent state DMV record exists, and they have called for criminal penalties in cases in which consent is knowingly misrepresented. Federal regulators have not indicated whether such proposals are under consideration.

Congress Takes a Closer Look

Ethicists have long cautioned that consent must be more than a checkbox and must remain grounded in respect for the donor-patient. In an October on organ transplantation, the American College of Physicians emphasized that clinicians’ primary duty is to the patient in their care, and that maintaining trust requires transparency and safeguards to prevent conflicts of interest from blurring that “bright line.”

Advocates say those steps leave unresolved the core problem raised by the Kinser family: the lack of a clear, legally binding way for people to say “no” and for that decision to follow them across state lines.

The said it “supports strengthening donor registries and enhancing registry interoperability to ensure that an individual’s documented donation decision is honored.” But OPOs have also argued that current policies protect donation as a legally enforceable gift and prevent families from overriding a loved one’s “yes” in the midst of grief. They argue that stronger, more durable consent helps reduce missed donations and saves lives.

Congress and federal regulators are considering changes to the nation’s organ donation system, including how consent is recorded and what should happen when a donor changes their mind.

Sen. Ron Wyden (D-Ore.) last year to create new federal standards for patient safety, transparency, and oversight of organ transplants, including a formal authorization for hospital or OPO staff to pause harvesting if there is any “clinical sign of life.”

HHS press secretary Emily Hilliard said the agency is “committed to holding organ procurement organizations accountable” and to “restoring integrity and transparency” to organ donation policy, calling reforms essential to informed consent and protecting donor rights. CMS issued related March 11, but it does not address the problems highlighted by the Kinsers’ case.

Critics of the organ transplant system say it is difficult for families to obtain documentation or independently verify how consent determinations were made in disputed cases.

HRSA has launched a sweeping modernization of the Organ Procurement and Transplantation Network, the national system that oversees organ allocation and transplant policy. Federal officials have described the overhaul as the most significant restructuring of the transplant system in decades, aimed at breaking up a long-standing contractor monopoly, strengthening patient safety oversight, and replacing aging technology infrastructure.

Central to that effort is modernizing the OPTN’s data systems: improving interoperability, audit trails, and transparency in how decisions are documented and reviewed. A more modern federal data architecture could make it easier to trace which registry was queried, what time stamp controlled, and how a consent determination was reached in disputed donations that span multiple states. But the modernization effort would not change the underlying state-by-state legal framework for donor authorization and what counts as a valid “no.”

Meanwhile, Donate Life America, a national nonprofit that supports state donor registries, also runs the , a central database that allows people to sign up as organ donors directly. Unlike many DMV systems, the national registry lets people log in at any time to view, update, or remove their registration and print proof of their decision. The group is also starting a project to let participating states send registrations directly into the national system, creating one place to track donor sign-ups and removals across state lines.

Each of the proposals comes with trade-offs, and both advocates and OPOs have raised concerns about how they would work in practice.

“Just doing a dump truck dump of information is not going to do much unless you really apply it through checking and auditing,” said Arthur Caplan, a professor of bioethics at New York University’s Grossman School of Medicine. “It could be like the IRS. They don’t have to audit everybody. Just do a spot audit once in a while.”

The Kinsers aren’t opposed to organ donation itself. They celebrated Raven’s donation in her obituary, and in their complaint to federal regulators, they wrote, “We are NOT anti-organ donation, and we will never take away the gift of life our oldest daughter gave to others. However, that was not LifeNet’s choice to make.”

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That’s why Ekirch, 31, of Henrico, Virginia, was stunned when she learned Anthem would finally have to pay for life-changing medical treatment.

For two years, she had battled the company to cover blood plasma infusions called intravenous immunoglobulin, or IVIG. The treatment has been shown, in some cases, to improve symptoms associated with small-fiber neuropathy, a condition that makes Ekirch’s limbs feel like they’re on fire.

But Anthem had repeatedly denied coverage for IVIG, which costs about $10,000 per infusion. Then, in February, an external review of her case conducted for the Virginia Bureau of Insurance overturned Anthem’s denial. It meant her parents would no longer need to withdraw money from her father’s retirement savings to pay out-of-pocket. Already, they’d spent about $90,000.

“My mom was sobbing. My dad was on his knees, sobbing. I don’t think I’ve ever seen him cry like that,” said Ekirch, describing her parents’ reaction to the reversal.

“I think I’m in shock from it all,” she said.

In a prepared statement, Stephanie DuBois, a spokesperson for Anthem Blue Cross and Blue Shield, said IVIG did not “align with our evidence-based standards.” But she said the company respects “the external reviewer’s decision” to overturn the denial.

Meanwhile, each year millions of patients like Ekirch continue to face denials through the prior authorization process, which requires many patients or their doctors to seek preapproval from health insurers before proceeding with medical care. And despite promises of reform from insurance companies, denials remain a frustrating hallmark of the American health care system.

Last June, Trump administration officials announced in a press conference that health insurance leaders had pledged to simplify prior authorization by taking steps such as “” subject to preapproval. The insurers also promised faster turnaround times and “clear, easy-to-understand explanations” of their decisions.

Yet in February, when ºÚÁϳԹÏÍø News contacted more than a dozen major insurers that signed the pledge, half of them failed to provide specifics about health care services for which they no longer require prior authorization.

A said the industry remains committed to the effort. But physicians, consumers, and patient advocates are pessimistic about the insurers’ willingness to follow through with these voluntary changes.

“They have no desire to do what’s in the best interest of the patient if it’s going to hurt their pockets,” said Matt Toresco, CEO of Archo Advocacy, a patient advocacy and consulting company.

“In the insurance world, the fiduciary responsibility is not to the patient,” he said. “It’s to the Street,” he said, referring to Wall Street.

Meaningful Change?

The Department of Health and Human Services did not respond to questions for this article. The few updates the federal government has issued since June on prior authorization reform include a about ensuring clinicians can submit requests electronically.

AHIP, the health insurer trade group that issued the January press release, did not provide information about specific treatments, codes, medications, or procedures that its members have released from prior authorization since signing the pledge.

“We will have additional progress updates coming out later this spring,” said Kelly Parsons, a spokesperson for the Blue Cross Blue Shield Association, which represents 33 independent Blue Cross and Blue Shield companies. She also offered no specifics.

Blue Cross and Blue Shield companies that cover patients in Alabama, Arkansas, Iowa, Michigan, Pennsylvania, South Carolina, South Dakota, and Tennessee either did not respond to questions for this article or deferred to the Blue Cross Blue Shield Association.

By contrast, other insurers cited specific examples of change.

Aetna CVS Health began “bundling” prior authorizations for musculoskeletal procedures, as well as for lung, breast, and prostate cancer patients, spokesperson Phil Blando said. This practice allows providers to file one authorization request for a patient’s treatment instead of several.

And Humana removed prior authorization requirements for “diagnostic services across colonoscopies,” among other changes, spokesperson Mark Taylor said.

UnitedHealthcare, which came under intense scrutiny for its use of prior authorization following the of one of its executives in late 2024, removed prior authorization requirements on Jan. 1 for “certain nuclear imaging, obstetrical ultrasound and echocardiogram procedures,” among other changes, spokesperson Matthew Rodriguez said.

Yet some health care insiders doubt these changes will amount to much.

“Insurers have made similar promises before and failed to deliver meaningful change,” said Bobby Mukkamala, president of the American Medical Association, which represents U.S. physicians and medical students.

In 2018, , including AHIP and the Blue Cross Blue Shield Association, announced a partnership “to identify opportunities to improve the prior authorization process.” Yet, in response to the June pledge, the process remains “costly, inefficient, opaque, and too often hazardous for patients.”

“Transparency is essential so everyone can see whether real reforms are happening,” he told ºÚÁϳԹÏÍø News.

Curbed Enthusiasm

Prior authorization may be getting more political attention, but data shows patients — particularly those with chronic conditions that require ongoing medical treatment — continue to face barriers to doctor-recommended care.

Among patients in that group, 39% said prior authorization is “the single biggest burden” in receiving care, according to a by KFF, a health information nonprofit that includes ºÚÁϳԹÏÍø News.

I was fighting to survive, and then I was fighting to convince someone that I deserved to survive.

Anna Hocum

That’s true for Payton Herres, 25, of Dayton, Ohio, who in 2012 received a heart transplant, which requires her to take an antirejection prescription medication for the rest of her life.

But last year, she said, Anthem denied coverage for the expensive drug. She’d been taking it for more than 10 years.

“I’ve been with Anthem my entire life, and then, all of a sudden — I don’t know what happened — they just started denying me over and over,” she said. “I almost ran out of medication.”

DuBois, the Anthem spokesperson, confirmed the company has approved the medication. It had not taken Herres’ treatment history into account when it denied coverage for the drug, DuBois said.

But Herres said the company will require her to obtain a new authorization for the medication in September.

“Are they going to deny other things, too?” she asked. “I hope I don’t have to keep fighting like this for the rest of my life.”

Anna Hocum, 25, is preparing for a similar fight. In 2024 and 2025, her insurer repeatedly denied coverage for expensive treatment used to slow the progression of a rare genetic condition that destroys her lung function.

“I just thought I was going to die,” said Hocum, of Milwaukee. “I was fighting to survive, and then I was fighting to convince someone that I deserved to survive.”

Like with Ekirch, Hocum’s parents paid while they waited for her insurance company to overturn the initial denials. Friends and family donated more than $30,000 through a GoFundMe campaign to help defray the costs.

Then last spring, Hocum said, her insurer reversed the denial without an apparent explanation. But the approval is valid for only 12 months, so she will need another prior authorization approval this year.

“It is scary,” she said. “It’s not guaranteed that it’ll be accepted.”

They fought me tooth and nail every step of the way, to the point that they made my life a living hell.

Sheldon Ekirch

Even though it’s a “huge relief” that Anthem is now obligated to cover Ekirch’s treatment, her mother doesn’t know if or how the family will recoup the money it has already paid.

In a letter to Ekirch confirming the external reviewer’s decision, Anthem explained that the authorization would be valid for a year beginning on Sept. 25, 2025. “We are pleased we can provide a favorable response in this case,” a grievance and appeals analyst for Anthem wrote.

Ekirch said the letter highlighted the company’s hypocrisy.

“They act as though they are a benevolent organization doing me a favor.” In reality, she said, “they fought me tooth and nail every step of the way, to the point that they made my life a living hell.”

Now, Ekirch’s access to IVIG may be in jeopardy again. Her COBRA coverage through Anthem expires in late March. In April, she will need to transition to a new insurance plan — and she’s bracing herself for another round of prior authorization.

“I just am so afraid that I don’t have the strength to go through and do what it takes,” Ekirch said, “to fight this battle again.”

Do you have an experience with prior authorization you’d like to share? to tell ºÚÁϳԹÏÍø News your story.

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Philip Stewart, a Rocky Mountain Laboratories researcher focused on tick-borne diseases, said he retired two years earlier than planned because of hurdles that made it too challenging to do his job well.

Alexa Romberg, an addiction prevention scientist focused on tobacco, said she “lost a great deal” of the research she oversaw when federal grants vanished.

“If one is thinking about the ‘Make America Healthy Again’ agenda and the prevention of chronic disease,” Romberg said, “tobacco use is the No. 1 contributor to early morbidity and mortality that we can prevent.”

The National Institutes of Health is the largest public funder of biomedical research in the world, with a to “enhance health, lengthen life, and reduce illness.”

Over decades, the value of the NIH may be the one thing everyone in Washington has agreed on. Lawmakers have routinely boosted its funding.

“I’m so pleased to be associated with NIH,” former Sen. Roy Blunt, a Missouri Republican and one of the NIH’s biggest champions in Congress, shortly before he retired.

But in President Donald Trump’s second term, the NIH has seen an exodus of scientists like Ernstoff, Stewart, and Romberg. Federal data shows the NIH lost about 4,400 people — more than 20% of its workforce. Scientists say the departures harm the U.S.’ ability to respond to disease outbreaks, develop treatments for chronic illnesses, and confront the nation’s most pressing public health problems.

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

Why They’re Leaving

ºÚÁϳԹÏÍø News interviewed a half dozen scientists who said they quit their jobs years before they’d planned to because of the tumult of 2025.

Only a few years ago, the NIH workforce was steadily growing, from roughly 17,700 employees in fiscal year 2019 to around 21,100 in fiscal 2024, federal data shows. Under Trump, those gains have been slashed.

The Trump administration enacted a campaign to purge government workers perceived as disloyal to the president. People were fired or encouraged to leave. Officials instituted a months-long freeze on hiring.

The NIH workforce has plummeted to about 17,100 people — its lowest level in at least two decades. Most who left weren’t fired. Roughly 4 in 5 either retired, quit, had appointments that expired, or transferred to a different job, according to federal data.

Scientists watched with dread as their colleagues were forced to terminate research funds for topics the Trump administration deemed off-limits. Across NIH labs, routine work stalled. They said they faced major delays in accessing equipment and supplies. Travel authorizations were slowed or denied.

Agency staff were instructed not to communicate with anyone outside the agency. When they could talk again, they were subject to greater constraints on what they could present to the public.

And under the administration’s agenda to eliminate “diversity, equity, and inclusion,” references to minorities or health equity were purged from NIH-funded research. Initiatives to protect Americans’ health were gutted. Among them: support for early-career scientists, ways to prevent harm from HIV or substance use, and efforts to study how different populations’ immune systems respond to disease.

, Chou and Romberg were among a group of NIH scientists who said they resigned in protest of an administration “that treats science not as a process for building knowledge, but as a means to advance its political agenda.”

A ‘Fundamental Destruction’

Health and Human Services spokesperson Emily Hilliard said in a statement that the agency had shifted to focus on evidence-based research over “ideological agendas.” She said the NIH is still recruiting “the best and brightest” and advancing high-quality science to “deliver breakthroughs for the American people.” The federal health department oversees NIH.

“A major reset was overdue. HHS has taken action to streamline operations, reduce redundancies, and return to pre-pandemic employment levels,” Hilliard said.

Many scientists, however, question whether the NIH can still fulfill its public mission.

“There’s been a fundamental destruction,” said Daniel Dulebohn, a researcher who spent nearly two decades at Rocky Mountain Laboratories in Hamilton, Montana. It’s going to “take a very, very long time to rebuild.”

Dulebohn left the NIH’s infectious disease and allergy institute in September.

He analyzed how molecules and proteins interact in diseases, such as Lyme disease, HIV, and Alzheimer’s — information that’s key for new treatments. Dulebohn was a resource for scientists when they hit walls trying to understand, for example, if molecules could prevent infection or react to a treatment.

Now he and his wife are living off savings in Mexico with their three young kids. Dulebohn’s thinking about what’s next. One option: real estate.

The expert in biochemical analysis operated equipment few others know how to use. His exit further depletes resources in the specialty.

“It’s clear when someone comes out with a drug and now you’ve just cured a disease. But you never know which ones could have been cured,” Dulebohn said. “We don’t know what we’ve lost.”

Laura Stark, a Vanderbilt University associate professor who specializes in the history of medicine and science, said wiping out NIH staff will propel a shift toward private-industry research, with its profit motives, “as opposed to actually helping American health.”

“We just don’t have people who are now able to pursue research for the public good,” Stark said.

From Support to Scrutiny

Stark said the seeds of the present-day NIH were planted during World War II when the U.S. government spearheaded an effort to mass-produce the antibiotic penicillin to save soldiers from infections.

The agency has played a central role in lifesaving discoveries and treatments — including for heart disease, cancer, diabetes, and genetic diseases such as cystic fibrosis.

With bipartisan backing from Congress, the NIH budget has grown significantly over time, sitting at $48.7 billion for fiscal 2026. The NIH allocates roughly 11% of its budget for agency scientists. About 80% is awarded to universities and other institutions.

The money may be there, but the people who get it out the door are not, scientists said.

Jennifer Troyer left the National Human Genome Research Institute in Bethesda, Maryland, on Dec. 31, after working in various positions at the NIH for about 25 years. The division she led reviews research and oversees grants to organizations studying the human genome — or a person’s complete set of genes — and how it can be used to benefit health.

Last year, she said, her division lost about two-thirds of its staff. “There really are not enough people there right now to actually get the work done,” Troyer said. “It’s extreme harm.”

She decided to quit the day Trump issued an in August that prohibited the use of grants to “fund, promote, encourage, subsidize, or facilitate” what it described as “anti-American values.” It also allowed political appointees to review all funding decisions.

“I wasn’t going to operate a division under those orders,” Troyer said. She hasn’t figured out her next career steps.

‘Enough Is Enough’

Research aligned with the administration’s stated priorities has suffered.

HHS Secretary Robert F. Kennedy Jr. has called the diagnosis and treatment of Lyme disease — a tick-borne infection that can cause debilitating lifelong symptoms — . In December, Kennedy said the government had long dismissed patients burdened with a disease that in the U.S. are diagnosed with annually.

That same month, Stewart, who had dedicated his career to ticks and Lyme disease as a federal scientist, retired early. He’d worked for the government for 27 years. Stewart said workforce cuts and travel delays stalled his efforts to confirm how far Lyme-carrying ticks had spread — information that could help doctors recognize symptoms sooner.

Stewart was a lead scientist on research published last year , or deer tick, in Montana. It was the first time the tick best known for transmitting Lyme disease had been confirmed in the state. He wanted to determine if the discovery was a fluke or an indicator that the species was gaining ground.

“The advice we’ve been getting is, ‘Put your head down below the trench line. Don’t look. Don’t peek over and risk getting shot,’” Stewart said. “At what point do you finally say, ‘Enough is enough’ and ‘We’re not being effective anymore’?”

Scientists said those early in their careers are looking abroad for jobs and training. People who want to stay in the U.S. are running into problems getting hired because of cuts to research grants and uncertainty about funding.

Collectively, people studying diseases warn the U.S. could lose its long-held position as the global leader in biomedical research, with devastating impact.

Stanley Perlman, a University of Iowa virologist who studies pediatric infectious diseases, said that title earned the nation more than prestige; it drew top scientists from the world over to the U.S. to study diseases that particularly affect people here.

There’s no guarantee halted research will be picked up elsewhere, whether by private industry or other countries. If others are doing that work, Americans could face delays in seeing benefits, he said.

“If you don’t have access to how the work was done,” Perlman said, “it’s harder to reproduce and adapt it for your country.”

ºÚÁϳԹÏÍø News data editor Holly K. Hacker contributed to this report.

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