The amounts represent what Medicaid spent covering the residents’ care when they lived at the Glenwood Resource Center, a state-run facility that closed last summer.

The bills are extraordinary examples of a practice called Medicaid estate recovery. Federal law requires states to try to collect money after some types of Medicaid recipients die. The point is to encourage people to use their own resources before relying on the public program. But some states, including Iowa, are particularly aggressive about the collections, national reports show.

Joy Higgins was stunned by a letter she received a few weeks after her 41-year-old daughter, Kristin, died last May. The letter was written on Iowa Department of Health and Human Services stationery. At the top, in bold letters, it said, “Re: Kristin Higgins.”

“Dear Joy Higgins,” the letter read. “Our sincere condolences to you, as we understand the above person is deceased.”

The letter explained that any money Kristin Higgins left behind would have to be remitted to the state to help repay Medicaid $4,263,148.67. Her family had 30 days to respond.

Joy Higgins, who lives in Council Bluffs, wonders why state debt collectors would send a massive bill to the family of someone like her daughter, who had little income because of a severe developmental disability stemming from a premature birth.

“What are they gaining? That’s my question. Except for kicking someone in the face right after they lost a loved one?” Higgins said.

Kristin Higgins’ only income was a Social Security disability benefit of $1,105 monthly. Most of that went directly to the state institution, where she lived for more than 30 years. Just $50 was set aside monthly as an allowance for personal expenses, according to a state ledger obtained by her family. “They knew exactly how much she had,” her mother said.

When she died, Kristin’s personal account had a balance of $2,239.84. The family put that money toward her funeral, an allowed expense. Nothing was left for the state to take. Higgins said receiving the letter was traumatic even though the family didn’t have to pay the Medicaid bill.

The Higginses have heard about similar attempts to collect from other families, including that of Eric Tomlyn, who died in 2020 at age 29 after spending most of his life at the Glenwood Resource Center.

Shortly after his death, the Tomlyn family received a Medicaid bill of more than $4.2 million. His mother, Susan Tomlyn, was shocked by the letter. “I was like, ‘What? What? Oh my God,’” she recalled.

She filled out a form explaining that the small balance in her son’s personal account had gone toward his funeral. “That’s the last I heard of it,” Tomlyn said.

Supporters of estate recovery efforts say the rules encourage people to pay for their own care before applying for Medicaid, which is mainly intended to help those with little money.

Critics of estate recovery programs say they often target families with little to give. Wealthier families tend to have lawyers who can structure estates in ways that avoid Medicaid repayment demands, the critics note.

Like Higgins, Tomlyn thought her Medicaid recovery bill came from state officials because it was printed on letterhead from the Iowa Department of Health and Human Services. The people who signed the letters identified themselves as being from the “Estate Recovery Program.” But the people who produce such letters work for private contractors hired to collect Medicaid debts, according to Alex Murphy, a spokesperson for the state agency. Their contract requires them to use state stationery.

Murphy said in an email to KFF Health News that such letters are sent after every death of an Iowa Medicaid recipient who was at least 55 years old or who lived in a long-term care facility. He said the letters “request information from family members regarding the deceased person’s assets and expenses,” and the letters note that repayments are expected only from the person’s estate.

Iowa’s Medicaid collections are handled by Sumo Group, a Des Moines company. Its director, Ben Chatman, declined to answer questions, including why the company sent bills to families of people with disabilities who lived most of their lives in state institutions. “I don’t do media relations,” Chatman said.

Sumo Group is a subcontractor of a national company, Gainwell Technologies, which has handled Medicaid collections for several states. In Iowa, the company is paid 11% of whatever it can collect from the estates of Medicaid participants. A spokesperson for Gainwell declined to comment.

Iowa’s Medicaid estate recovery program brought in $40.2 million in the fiscal year that ended last June, up nearly 14% from two years earlier, state records show. That total represents a sliver of the state’s total Medicaid budget, which is expected to hit $9 billion this year.

Nearly two-thirds of Iowa estate recovery cases wound up being closed with no collection of money last fiscal year, according to the state. In cases in which money was recouped, the average amount paid was about $10,000.

Thirty-five Iowa families were granted hardship waivers, which the state allows if an heir’s health or life would be endangered because payment of the Medicaid bill would deprive them of food, clothing, shelter, or medical care. Officials denied an additional 20 requests for hardship waivers.

A 2021 report to Congress estimated states collected more than $700 million annually from Medicaid participants’ estates. That money is shared with the federal government, which helps finance Medicaid. Some states claw back much less than others. Hawaii, for example, collected just $31,000 in 2019, the latest year analyzed in the federal report. Iowa, with about twice as many residents as Hawaii, raked back more than $26 million that year.

Americans aren’t subject to such clawbacks for using any other federal health program, including Medicare, which covers older people of all income levels.

The national group Justice in Aging has helped lead opposition to Medicaid estate recovery programs. Eric Carlson, a California attorney for the group, said the issue usually comes into play after the death of a person who had nursing home care covered by Medicaid. Recovery demands often force survivors to sell homes that are their families’ main form of wealth, he said.

Carlson said he hadn’t previously heard of Medicaid estate recovery bills topping $4 million, like the ones sent to survivors of the two Iowans with disabilities.

He wondered why debt collectors would pursue such cases, which are unlikely to yield any money but could cause anxiety for families. “Of course, if you open up a piece of mail that says you owe millions of dollars, you’re going to think the worst,” he said.

Carlson said he would advise anyone who receives such a letter to respond to it with documentation showing that their loved one’s estate can’t repay a Medicaid debt. “It’s never a good idea to ignore it,” he said. Failure to respond to the bill could lead to continued collection efforts, which could threaten a family member’s finances or property, he said.

Some states have reined in their Medicaid clawback efforts. For example, Massachusetts legislators last year voted to drastically limit their program. This was the second time Massachusetts reduced its Medicaid estate recovery effort, which once was one of the most aggressive in the U.S.

Critics in Congress have also tried to limit the practice.

Rep. Jan Schakowsky (D-Ill.) has twice introduced bills to eliminate the federal requirement that states claw back Medicaid spending from recipients’ estates. Last year’s bill gained 47 Democratic co-sponsors, but it received no support from the Republicans controlling the chamber, and there was no similar bill in the Senate. She plans to try again this year, even though her party remains in the minority.

Schakowsky said in an interview that she’d never heard of Medicaid estate recovery demands reaching millions of dollars, as the Iowa families faced. But demands for hundreds of thousands of dollars are common. For many families, “that’s still impossible” to meet, she said.

Schakowsky hopes that members of Congress from both parties will agree to curtail the program once they realize how much angst it causes their constituents and how relatively little money it returns to the government. “The whole program is ridiculous,” she said.

Her quest could become even tougher if the Trump administration moves ahead with proposals to trim Medicaid spending.

The office of Sen. Chuck Grassley, who is the senior member of Iowa’s all-Republican congressional delegation and has taken leading roles in many health policy debates, declined to comment on the issue.

The Iowa Department of Health and Human Services said it notifies families about the estate recovery process when they apply for Medicaid. Joy Higgins said she doesn’t recall seeing such a notice.

The institution where Kristin Higgins spent most of her life was closed last year after federal officials investigated complaints of poor medical care. But Joy Higgins said her daughter was treated well there overall. “If I had millions in the bank, I’d give it to the state,” she said. “I would. It was worth it.”

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Disability rights advocates hope Iowa will honor them by preventing the kind of neglect that has plagued similar cemeteries at other shuttered facilities around the U.S.

The southwest Iowa institution, called the Glenwood Resource Center, was closed this summer in the wake of allegations of poor care. The last of its living residents were moved elsewhere in June. But the remains of about 1,300 people will stay where they were buried on the grounds.

The graveyard, which dates to the 1800s, covers several acres of sloping ground near the campus’s brick buildings. A 6-foot-tall, weathered-concrete cross stands on the hillside, providing the most visible clue to the field’s purpose.

On a recent afternoon, dried grass clippings obscured row after row of small stone grave markers set flat in the ground. Most of the stones are engraved with only a first initial, a last name, and a number.

“If somebody who’s never been to Glenwood drove by, they wouldn’t even know there was a cemetery there,” said Brady Werger, a former resident of the facility.

During more than a century of operation, the institution housed thousands of people with intellectual disabilities. Its population declined as society turned away from the practice of sequestering people with disabilities and mental illness in large facilities for decades at a time. The cemetery is filled with residents who died and weren’t returned to their hometowns for burial with their families.

State and local leaders are working out arrangements to maintain the cemetery and the rest of the 380-acre campus. Local officials, who are expected to take control of the grounds next June, say they’ll need extensive state support for upkeep and redevelopment, especially with the town of about 5,000 people reeling from the loss of jobs at the institution.

Hundreds of such places were constructed throughout the U.S. starting in the 1800s. Some, like the one in Glenwood, served people with disabilities, such as those caused by autism or seizure disorders. Others housed people with mental illness.

Most of the facilities were built in rural areas, which were seen as providing a wholesome environment.

States began shrinking or closing these institutions more than 50 years ago. The shifts were a response to complaints about people being removed from their communities and subjected to inhumane conditions, including the use of isolation and restraints. In the past decade, Iowa has closed two of its four mental hospitals and one of its two state institutions for people with intellectual disabilities.

After closures in some other states, institutions’ cemeteries were abandoned and became overgrown with weeds and brush. The neglect drew protests and sparked efforts to respectfully memorialize people who lived and died at the facilities.

“At some level, the restoration of institutions’ cemeteries is about the restoration of humanity,” said Pat Deegan, a Massachusetts mental health advocate who works on the issue nationally. Deegan, who was diagnosed with schizophrenia as a teenager, sees the neglected graveyards as symbolic of how people with disabilities or mental illness can feel as if their individual identities are buried beneath the labels of their conditions.

Deegan, 70, helped lead efforts to rehabilitate a pair of overgrown cemeteries at the Danvers State Hospital near Boston, which housed people with mental illness before it closed in 1992. More than 700 former residents were buried there, with many graves originally marked only with a number.

The Massachusetts hospital’s grounds were redeveloped into a condominium complex. The rehabilitated cemeteries now have individual gravestones and a large historical marker, explaining what the facility was and who lived there. The sign notes that some past methods of caring for psychiatric patients seem “barbarous” by today’s standards, but the text portrays the staff as well-meaning. It says the institution “attempted to alleviate the problems of many of its members with care and empathy that, although not always successful, was nobly attempted.”

Deegan has helped other groups across the country organize renovations of similar cemeteries. She urges communities to include former residents of the facilities in their efforts.

Iowa’s Glenwood Resource Center started as a home for orphans of Civil War soldiers. It grew into a large institution for people with disabilities, many of whom lived there for decades. Its population peaked at more than 1,900 in the 1950s, then dwindled to about 150 before state officials decided to close it.

Werger, 32, said some criticisms of the institution were valid, but he remains grateful for the support the staff gave him until he was stable enough to move into community housing in 2018. “They helped change my life incredibly,” he said. He thinks the state should have fixed problems at the facility instead of shutting it.

He said he hopes officials preserve historical parts of the campus, including stately brick buildings and the cemetery. He wishes the graves had more extensive headstones, with information about the residents buried there. He would also like to see signs installed explaining the place’s history.

Two former employees of the Glenwood facility recently raised concerns that some of the graves may be mismarked. But officials with the Iowa Department of Health and Human Services, which ran the institution, said they have extensive, accurate records and recently placed stones on three graves that were unmarked.

Department leaders declined to be interviewed about the cemetery’s future. Spokesperson Alex Murphy wrote in an email that while no decisions have been made about the campus, the agency “remains committed to ensuring the cemetery is protected and treated with dignity and respect for those who have been laid to rest there.”

Glenwood civic leaders have formed a nonprofit corporation that is negotiating with the state over development plans for the former institution. “We’re trying to make the best of a tough situation,” said Larry Winum, a local banker who serves on the new organization’s board.

Tentative plans include tearing down some of the existing buildings and creating up to 900 houses and apartments.

Winum said redevelopment should include some kind of memorial sign about the institution and the people buried in the cemetery. “It will be important to us that those folks be remembered,” he said.

Activists in other states said properly honoring such places takes sustained commitment and money.

Jennifer Walton helped lead efforts in the 1990s to properly mark graves and improve cemetery upkeep at state institutions in Minnesota.

Some of the cemeteries are deteriorating again, she said. Activists plan to ask Minnesota legislators to designate permanent funding to maintain them and to place explanatory markers at the sites.

“I think it’s important, because it’s a way to demonstrate that these spaces represent human beings who at the time were very much hidden away,” Walton said. “No human being should be pushed aside and ignored.”

On a recent day, just one of the Glenwood graves had flowers on it. Retired managers of the institution said few people visit the cemetery, but amateur genealogists sometimes show up after learning that a long-forgotten ancestor was institutionalized at Glenwood and buried there.

Former grounds supervisor Max Cupp said burials had become relatively rare over the years, with more families arranging to have deceased residents’ remains transported to their hometown cemeteries.

One of the last people buried in the Glenwood cemetery was Kenneth Rummells, who died in 2022 at age 71 after living many years at the institution and then at a nearby group home overseen by the state. His guardian was Kenny Jacobsen, a retired employee of the facility who had known him for decades.

Rummells couldn’t speak, but he could communicate by grunting, Jacobsen said. He enjoyed sitting outside. “He was kind of quiet, kind of a touch-me-not guy.”

Jacobsen helped arrange for a gravestone that is more detailed than most others in the cemetery. The marker includes Rummells’ full name, the dates of his birth and death, a drawing of a porch swing, and the inscription “Forever swinging in the breeze.”

Jacobsen hopes officials figure out how to maintain the cemetery. He would like to see a permanent sign erected, explaining who is buried there and how they came to live in Glenwood. “They were people too,” he said.

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The second icon signals that this rest area along Interstate 80 in western Iowa has a bathroom equipped with a full-size changing table, making it an oasis for adults and older children who use diapers because of disabilities.

“It’s a beacon of hope,” said Nancy Baker Curtis, whose 9-year-old son, Charlie, has a disability that can leave him incontinent. “I’m like, ‘Oh my gosh, we’re finally there.’”

The white changing table is 6 feet long and can be lowered and raised with a handheld controller wired to an electric motor. When not in use, the table folds up against the wall.

The table was recently installed as part of a national effort to make public bathrooms more accessible in places like airports, parks, arenas, and gas stations. Without such options, people with disabilities often wind up being changed on bathroom floors, in cars, or even on the ground outside.

Many families hesitate to go out because of the lack of accessible restrooms. “We all know somebody who’s tethered to their home by bathroom needs,” Baker Curtis said. She doesn’t want her son’s life to be limited that way. “Charlie deserves to be out in the community.”

She said the need can be particularly acute when people are traveling in rural areas, where bathroom options are sparse.

Baker Curtis, who lives near Des Moines, leads the Iowa chapter of a national group called “Changing Spaces,” which advocates for adult-size changing tables. The group offers an online map showing scores of locations where they’ve been installed.

Advocates say such tables are not explicitly required by the federal Americans with Disabilities Act. But a new federal law will mandate them in many airports in coming years, and states can adopt building codes that call for them. California, for example, requires them in new or renovated auditoriums, arenas, amusement parks, and similar facilities with capacities of at least 2,500 people. Ohio requires them in some settings, including large public facilities and highway rest stops. Arizona, Illinois, Maryland, Minnesota, and New Hampshire also have taken steps to require them in some public buildings.

Justin Boatner of Arlington, Virginia, advocates for more full-size changing tables in the Washington, D.C., area. Boatner, 26, uses a wheelchair because of a disability similar to muscular dystrophy. He uses diapers, which he often changes himself.

He can lower an adjustable changing table to the height of his wheelchair, then pull himself onto it. Doing that is much easier and more hygienic than getting down on the floor, changing himself, and then crawling back into the wheelchair, he said.

Boatner said it’s important to talk about incontinence, even though it can be embarrassing. “There’s so much stigma around it,” he said.

He said adult changing tables are still scarce, including in health care facilities, but he’s optimistic that more will be installed. Without them, he sometimes delays changing his diaper for hours until he can get home. That has led to serious rashes, he said. “It’s extremely uncomfortable.”

Iowa legislators in recent years have considered requiring adult changing tables in some public restrooms. They declined to pass such a bill, but the discussion made Iowa Department of Transportation leaders aware of the problem. “I’m sorry to say, it was one of those things we’d just never thought of,” said Michael Kennerly, director of the department’s design bureau.

Kennerly oversees planning for rest stops. He recalls an Iowan telling him about changing a family member outside in the rain, with only an umbrella for shelter. Others told him how they changed their loved ones on bathroom floors. “It was just appalling,” he said.

Iowa began installing adult changing tables in rest stops in 2022, and it has committed to including them in new or remodeled facilities. So far, nine have been installed or are in the process of being added. Nine others are planned, with more to come, Kennerly said. Iowa has 38 rest areas equipped with bathrooms.

Kennerly estimated it costs up to $14,000 to remodel an existing rest-stop bathroom to include a height-adjustable adult changing table. Incorporating adult changing tables into a new rest stop building should cost less than that, he said.

Several organizations offer portable changing tables, which can be set up at public events. Some are included in mobile, accessible bathrooms carried on trailers or trucks. Most permanent adult changing tables are set up in “family restrooms,” which have one toilet and are open to people of any gender. That’s good, because the act of changing an adult is “very intimate and private,” Baker Curtis said. It’s also important for the tables to be height-adjustable because it’s difficult to lift an adult onto a fixed-height table, she said.

Advocates hope adult changing tables will become nearly as common as infant changing tables, which once were rare in public bathrooms.

Jennifer Corcoran, who lives near Dayton, Ohio, has been advocating for adult changing tables for a decade and has seen interest rise in recent years.

Corcoran’s 24-year-old son, Matthew, was born with brain development issues. He uses a wheelchair and is unable to speak, but he accompanies her when she lobbies for improved services.

Corcoran said Ohio leaders this year designated $4.4 million in federal pandemic relief money to be distributed as grants for changing-table projects. The program has led to installations at Dayton’s airport and art museum, plus libraries and entertainment venues, she said.

Ohio also is adding adult changing tables to rest stops. Corcoran said those tables are priceless because they make it easier for people with disabilities to travel. “Matthew hasn’t been on a vacation outside of Ohio for more than five years,” she said.

Kaylan Dunlap serves on a committee that has worked to add changing-table requirements to the International Building Code, which state and local officials often use as a model for their rules.

Dunlap, who lives in Alabama, works for an architecture firm and reviews building projects to ensure they comply with access standards. She expects more public agencies and companies will voluntarily install changing tables. Maybe someday they will be a routine part of public bathrooms, she said. “But I think that’s a long way out in the future, unfortunately.”

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Frey has been paralyzed from the neck down for more than 37 of his 42 years. He has spent decades rejecting the government’s excuses when he and others with disabilities are denied the support they need to live in their own homes and to participate in society.

The Iowan won a landmark case before the U.S. Supreme Court in 1999, after his school district refused to pay for the care he needed to continue attending high school classes in Cedar Rapids. He recently scored another victory when a complaint he lodged with federal officials pressured Iowa to agree to increase Medicaid payments for caregivers to stay overnight with Frey so he won’t need to move into a nursing home.

“These are civil rights issues,” he said. “They are human rights issues.”

Frey makes his points a handful of words at a time. The cadence of his speech follows the rhythm of a mechanical ventilator, which pushes air into his lungs every few seconds through a tube in his throat.

His voice is soft, but he makes sure it’s heard.

Frey was paralyzed in an accident at age 4. He uses sip-and-puff controls to drive his wheelchair into courtrooms and through the halls of the Iowa Statehouse and the U.S. Capitol, where he demands policies that allow people with disabilities to live full lives.

“We’ll get there. It takes time, but I’m not going to just let things go or let things slide,” he said in an interview on the sunny patio of his Cedar Rapids home.

Frey emphasizes that anyone could find themselves needing assistance if they suffer an accident or illness that hampers their ability to care for themselves. He encourages other people with disabilities to cite his victories when seeking services they’re entitled to under federal law.

He has served on numerous local, state, and national boards and committees focused on protecting disability rights. He composes emails and updates his website using voice commands and a sticker on his chin that can interact with his computer’s camera.

His activism has drawn admirers nationwide.

“People like Garret are critically important, because they are the trailblazers,” said Melanie Fontes Rainer, director of the Office for Civil Rights at the U.S. Department of Health and Human Services.

In June, Fontes Rainer’s office announced an agreement with the state of Iowa to settle Frey’s complaint that Medicaid pay rates were insufficient for him to hire and retain overnight caregivers at his home.

Frey said he filed his federal complaint after being rebuffed by state officials. The resulting agreement increased his workers’ pay from about $15.50 to $22 an hour, the federal agency said. It also made other changes designed to allow Frey to continue living in the home he shares with his mother and brother.

Fontes Rainer said state officials cooperated with her office in settling Frey’s complaint. She said she hopes other people will take notice of the result and report problems they have in obtaining services that help them remain in their communities.

The federal administrator said she gets emotional when she sees how hard Frey and others fight for their rights. “You shouldn’t have to advocate for health care,” she said. “When I think about all that he’s been through, and that he continues to use his voice, I think it is so powerful.”

The Iowa Department of Health and Human Services declined to comment on Frey’s case. But spokesperson Alex Murphy said the department is “committed to ensuring access to high-quality behavioral health, disability, and aging services for all Iowans in their communities.”

This summer, Frey and his mother visited Washington, D.C., where they participated in a 25th anniversary celebration of the Supreme Court decision Olmstead v. L.C. In that landmark case, the justices declared that people with disabilities have a right to live in their own communities, instead of in an institution, if their needs can be reasonably accommodated.

Frey was reminded during the ceremony that others are still buoyed by his own Supreme Court case, Cedar Rapids Community School District v. Garret F.

The 1999 case focused on the Frey family’s contention that the school district should pay for help Garret needed to safely use his ventilator so he could continue to attend classes. School district leaders said they shouldn’t have to pay for such assistance because it was health care.

The court, in a 7-2 decision, described Frey as “a friendly, creative, and intelligent young man” who had a right to services enabling him to attend school with his peers.

At the recent Washington ceremony, a California teenager approached Frey. “He said, ‘You’re Garret F? Thank you. Without you, I’d never have been able to go to school,’” recalled Frey’s mother, Charlene Frey.

The 13-year-old fan was James McLelland, who breathes through a tube in his throat because of a genetic issue that impedes his windpipe. His breathing apparatus needs constant monitoring and frequent cleaning by a nurse.

His mother, Jenny McLelland, said she shows printed copies of the Garret F. court decision to school officials when she requests that James be provided with a nurse so he can attend regular classes instead of being sent to a separate school.

Because of the Supreme Court precedent, “we didn’t have to litigate, we just had to educate,” she said in an interview.

James, who is entering eighth grade this school year, is thriving in classes and loves playing percussion in band, his mother said. “James has had the life that people like Garret had to fight to get,” she said. “These are the kinds of rights that are built brick by brick.”

Frey said he found inspiration from earlier advocates, including Katie Beckett, a fellow Cedar Rapids resident who, four decades ago, drew national attention to the plight of children with disabilities who were forced to live away from their families. Beckett, who was partly paralyzed by encephalitis as an infant, was kept in a hospital for about three years. At the time, federal rules prevented payment for Beckett to receive care in her home, even though it would have been much less expensive than hospital care.

In 1981, President Ronald Reagan denounced the situation as absurd and told administrators to find a way to let the young Iowan go home. The Republican president’s stance led to the creation of what are still known as Katie Beckett waivers, which make it easier for families to get Medicaid coverage for in-home care for children with disabilities.

Frey knew Beckett and her mother, Julie Beckett, and admired how their outspokenness prompted reforms. He also drew inspiration from meeting Tom Harkin, the longtime U.S. senator from Iowa who was the lead author of the 1990 Americans with Disabilities Act.

Harkin, a Democrat, is retired from the Senate but keeps tabs on disability issues. In an interview, he said he was glad to hear that Frey continues to push for the right to participate in society.

Harkin said he is disappointed when he sees government officials and business leaders fail to follow requirements under the Americans with Disabilities Act. To maintain the law’s power, people should speak up when they’re denied services or accommodations, he said. “It’s important to have warriors like Garret and his mother and their supporters.”

Iowa’s agreement to increase Medicaid pay for Frey’s caregivers has helped him hire more overnight workers, but he still goes some nights without one. When no outside help is available, his mother handles his care. Although she can be paid, she no longer wants to play that role. “She should be able to just be my mom,” he said.

At a recent board meeting of The Arc of Iowa, a disability rights group, Frey told his friends he’s thinking about applying for a civil rights job with the federal government or running for public office.

“I’m ready to rumble,” he said.

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Holmes, who lives in northwestern Washington state, had surgery in 2019 to have her fallopian tubes tied, a permanent birth-control procedure that her insurance company agreed ahead of time to cover.

During the operation, while Holmes was under anesthesia, the surgeon noticed early signs of endometriosis, a common condition in which fibrous scar tissue grows around the uterus, Holmes said. She said the surgeon later told her he spent about 15 minutes cauterizing the troublesome tissue as a precaution. She recalls him saying he finished the whole operation within the 60 minutes that had been allotted for the tubal ligation procedure alone.

She said the doctor assured her the extra treatment for endometriosis would cost her little, if anything.

Then the bill came.

The Patient: Jamie Holmes, 38, of Lynden, Washington, who was insured by Premera Blue Cross at the time.

Medical Services: A tubal ligation operation, plus treatment of endometriosis found during the surgery.

Service Provider: Pacific Rim Outpatient Surgery Center of Bellingham, Washington, which has since been purchased, closed, and reopened under a new name.

Total Bill: $9,620. Insurance paid $1,262 to the in-network center. After adjusting for prices allowed under the insurer’s contract, the center billed Holmes $2,605. A collection agency later acquired the debt and sued her for $3,792.19, including interest and fees.

What Gives: The surgery center, which provided the facility and support staff for her operation, sent a bill suggesting that Holmes underwent two separate operations, one to have her tubes tied and one to treat endometriosis. It charged $4,810 for each.

Holmes said there were no such problems with the separate bills from the surgeon and anesthesiologist, which the insurer paid.

Holmes figured someone in the center’s billing department mistakenly thought she’d been on the operating table twice. She said she tried to explain it to the staff, to no avail.

She said it was as if she ordered a meal at a fast-food restaurant, was given extra fries, and then was charged for two whole meals. “I didn’t get the extra burger and drink and a toy,” she joked.

Her insurer, Premera Blue Cross, declined to pay for two operations, she said. The surgery center billed Holmes for much of the difference. She refused to pay.

Holmes said she understands the surgery center could have incurred additional costs for the approximately 15 minutes the surgeon spent cauterizing the spots of endometriosis. About $500 would have seemed like a fair charge to her. “I’m not opposed to paying for that,” she said. “I am opposed to paying for a whole bunch of things I didn’t receive.”

The physician-owned surgery center was later purchased and closed by PeaceHealth, a regional health system. But the debt was turned over to a collection agency, SB&C, which filed suit against Holmes in December 2023, seeking $3,792.19, including interest and fees.

The collection agency asked a judge to grant summary judgment, which could have allowed the company to garnish wages from Holmes’ job as a graphic artist and marketing specialist for real estate agents.

Holmes said she filed a written response, then showed up on Zoom and at the courthouse for two hearings, during which she explained her side, without bringing a lawyer. The judge ruled in February that the collection agency was not entitled to summary judgment, because the facts of the case were in dispute.

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Representatives of the collection agency and the defunct surgery center declined to comment for this article.

Sabrina Corlette, co-director of Georgetown University’s Center on Health Insurance Reforms, said it was absurd for the surgery center to bill for two operations and then refuse to back down when the situation was explained. “It’s like a Kafka novel,” she said.

Corlette said surgery center staffers should be accustomed to such scenarios. “It is quite common, I would think, for a surgeon to look inside somebody and say, ‘Oh, there’s this other thing going on. I’m going to deal with it while I’ve got the patient on the operating table.’”

It wouldn’t have made medical or financial sense for the surgeon to make Holmes undergo a separate operation for the secondary issue, she said.

Corlette said that if the surgery center was still in business, she would advise the patient to file a complaint with state regulators.

The Resolution: So far, the collection agency has not pressed ahead with its lawsuit by seeking a trial after the judge’s ruling. Holmes said that if the agency continues to sue her over the debt, she might hire a lawyer and sue them back, seeking damages and attorney fees.

She could have arranged to pay off the amount in installments. But she’s standing on principle, she said.

“I just got stonewalled so badly. They treated me like an idiot,” she said. “If they’re going to be petty to me, I’m willing to be petty right back.”

The Takeaway: Don’t be afraid to fight a bogus medical bill, even if the dispute goes to court.

Debt collectors often seek summary judgment, which allows them to garnish wages or take other measures to seize money without going to the trouble of proving in a trial that they are entitled to payments. If the consumers being sued don’t show up to tell their side in court hearings, judges often grant summary judgment to the debt collectors.

However, if the facts of a case are in dispute — for example, because the defendant shows up and argues she owes for just one surgery, not two — the judge may deny summary judgment and send the case to trial. That forces the debt collector to choose: spend more time and money pursuing the debt or drop it.

“You know what? It pays to be stubborn in situations like this,” said Berneta Haynes, a senior attorney for the National Consumer Law Center who reviewed Holmes’ bill for KFF Health News.

Many people don’t go to such hearings, sometimes because they didn’t get enough notice, don’t read English, or don’t have time, she said.

“I think a lot of folks just cave” after they’re sued, Haynes said.

Emily Siner reported the audio story.

After six years, we’ll have a final installment with NPR of our Bill of the Month project in the fall. But Bill of the Month will continue at KFF Health News and elsewhere. We still want to hear about your confusing or outrageous medical bills. Visit Bill of the Month to share your story.

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

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At least 41 Iowa hospitals have shuttered their labor and delivery units since 2000. Those facilities, representing about a third of all Iowa hospitals, are located mostly in rural areas where birth numbers have plummeted. In some Iowa counties, annual numbers of births have fallen by three-quarters since the height of the baby boom in the 1950s and ’60s, when many rural hospitals were built or expanded, state and federal records show.

Similar trends are playing out nationwide, as hospitals struggle to maintain staff and facilities to safely handle dwindling numbers of births. More than half of rural U.S. hospitals now lack the service.

“People just aren’t having as many kids,” said Addie Comegys, who lives in southern Iowa and has regularly traveled 45 minutes each way for prenatal checkups at Oskaloosa’s hospital this summer. Her mother had six children, starting in the 1980s, when big families didn’t seem so rare.

“Now, if you have three kids, people are like, ‘Oh my gosh, are you ever going to stop?’” said Comegys, 29, who is expecting her second child in late August.

These days, many Americans choose to have small families or no children at all. Modern birth control methods help make such decisions stick. The trend is amplified in small towns when young adults move away, taking any childbearing potential with them.

Hospital leaders who close obstetrics units often cite declining birth numbers, along with staffing challenges and financial losses. The closures can be a particular challenge for pregnant women who lack the reliable transportation and flexible schedules needed to travel long distances for prenatal care and birthing services.

The baby boom peaked in 1957, when about 4.3 million children were born in the United States. The annual number of births dropped below 3.7 million by 2022, even though the overall U.S. population nearly doubled over that same period.

West Virginia has seen the steepest decline in births, a 62% drop in those 65 years, according to federal data. Iowa’s births dropped 43% over that period. Of the state’s 99 counties, just four — all urban or suburban — recorded more births.

Births have increased in only 13 states since 1957. Most of them, such as Arizona, California, Florida, and Nevada, are places that have attracted waves of newcomers from other states and countries. But even those states have had obstetrics units close in rural areas.

In Iowa, Oskaloosa’s hospital has bucked the trend and kept its labor and delivery unit open, partly by pulling in patients from 14 other counties. Last year, the hospital even managed the rare feat of recruiting two obstetrician-gynecologists to expand its services.

The publicly owned hospital, called Mahaska Health, expects to deliver 250 babies this year, up from about 160 in previous years, CEO Kevin DeRonde said.

“It’s an essential service, and we needed to keep it going and grow it,” DeRonde said.

Many of the U.S. hospitals that are now dropping obstetrics units were built or expanded in the mid-1900s, when America went on a rural-hospital building spree, thanks to federal funding from the Hill-Burton Act.

“It was an amazing program,” said Brock Slabach, chief operations officer for the National Rural Health Association. “Basically, if you were a county that wanted a hospital, they gave you the money.”

Slabach said that in addition to declining birth numbers, obstetrics units are experiencing a drop in occupancy because most patients go home after a night or two. In the past, patients typically spent several days in the hospital after giving birth.

Dwindling caseloads can raise safety concerns for obstetrics units.

A study published in JAMA in 2023 found that women were more likely to suffer serious complications if they gave birth in rural hospitals that handled 110 or fewer births a year. The authors said they didn’t support closing low-volume units, because that could lead more women to have complications related to traveling for care. Instead, they recommended improving training and coordination among rural health providers.

Stephanie Radke, a University of Iowa obstetrics and gynecology professor who studies access to birthing services, said it is almost inevitable that when rural birth numbers plunge, some obstetrics units will close. “We talk about that as a bad event, but we don’t really talk about why it happens,” she said.

Radke said maintaining a set number of obstetrics units is less important than ensuring good care for pregnant women and their babies. It’s difficult to maintain quality of care when the staff doesn’t consistently practice deliveries, she said, but it is hard to define that line. “What is realistic?” she said. “I don’t think a unit should be open that only delivers 50 babies a year.”

In some cases, she said, hospitals near each other have consolidated obstetrics units, pooling their resources into one program that has enough staffers and handles sufficient cases. “You’re not always really creating a care desert when that happens,” she said.

The decline in births has accelerated in many areas in recent years. Kenneth Johnson, a sociology professor and demographer at the University of New Hampshire, said it is understandable that many rural hospitals have closed obstetrics units. “I’m actually surprised some of them have lasted as long as they have,” he said.

Johnson said rural areas that have seen the steepest population declines tend to be far from cities and lack recreational attractions, such as mountains or large bodies of water. Some have avoided population losses by attracting immigrant workers, who tend to have larger families in the first generation or two after they move to the U.S., he said.

Katy Kozhimannil, a University of Minnesota health policy professor who studies rural issues, said declining birth numbers and obstetric unit closures can create a vicious cycle. Fewer babies being born in a region can lead a birthing unit to shutter. Then the loss of such a unit can discourage young people from moving to the area, driving birth numbers even lower.

In many regions, people with private insurance, flexible schedules, and reliable transportation choose to travel to larger hospitals for their prenatal care and to give birth, Kozhimannil said. That leaves rural hospitals with a larger proportion of patients on Medicaid, a public program that pays about half what private insurance pays for the same services, she said.

Iowa ranks near the bottom of all states for obstetrician-gynecologists per capita. But Oskaloosa’s hospital hit the jackpot last year, when it recruited Taylar Swartz and Garth Summers, a married couple who both recently finished their obstetrics training. Swartz grew up in the area, and she wanted to return to serve women there.

She hopes the number of obstetrics units will level off after the wave of closures. “It's not even just for delivery, but we need access just to women's health care in general,” she said. “I would love to see women's health care be at the forefront of our government's mind.”

Swartz noted that the state has only one obstetrics training program, which is at the University of Iowa. She said she and her husband plan to help spark interest in rural obstetrics by hosting University of Iowa residency rotations at the Oskaloosa hospital.

Comegys, a patient of Swartz’s, could have chosen a hospital birthing center closer to her home, but she wasn’t confident in its quality. Other hospitals in her region had shuttered their obstetrics units. She is grateful to have a flexible job, a reliable car, and a supportive family, so she can travel to Oskaloosa for checkups and to give birth there. She knows many other women are not so lucky, and she worries other obstetrics units are at risk.

“It’s sad, but I could see more closing,” she said.

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GRINNELL, Iowa — The farmers’ co-op here is a center of hope every spring. It’s where farmers buy seed and fertilizer for the summer’s crops, and where they seek tips to maximize their harvest of corn and soybeans.

But on a recent morning, a dozen mental health professionals gathered at the Key Cooperative Agronomy Center to discuss why so many farmers quietly struggle with untreated anxiety and depression.

Studies have concluded that suicide is unusually common among farmers. Researchers believe it’s not just because many farmers have other risk factors, such as rural addresses and access to guns.

The tragic trend has caught the attention of the U.S. Department of Agriculture, which sponsors training sessions like the one in Grinnell to help health care professionals learn how to talk to farmers about the pressures they face in wringing a living out of the land.

“A lot of them are born to it. They don’t have any choice,” family therapist David Brown explained to the session’s participants. He noted many farms have been passed down for generations. Current owners feel that if they fail, they would be letting down their grandparents, parents, children, and grandchildren.

Brown, who works for Iowa State University Extension and Outreach, led the training in Grinnell. He said farmers’ fate hinges on factors out of their control. Will the weather be favorable? Will world events cause prices to soar or crash? Will political conflicts spark changes in federal agricultural support programs? Will a farmer suffer an injury or illness that makes them unable to perform critical chores?

Brown said surveys show many farmers are reluctant to seek mental health care, partly because they think therapists or doctors couldn’t understand their lives.

Tina Recker, a mental health therapist in northeastern Iowa, attended the training session. She has lived on farms, and she has seen how the profession can become a person’s entire identity. “It’s just farm, farm, farm, farm,” she told the group. “If something goes wrong with it, that’s your whole world.”

It’s difficult to estimate how much of farmers’ increased risk of suicide is due to their profession.

Part of the reason for the elevated rate could be that many farmers are middle-aged or older men, who tend to be more at risk in general. “But it’s broader than that for sure,” said Edwin Lewis, a USDA administrator who helps oversee efforts to address the situation.

The Grinnell training session was part of a federal program called the Farm and Ranch Stress Assistance Network. Lewis said the program, which also funds counseling hotlines and support groups, spends $10 million a year.

Jason Haglund sees the issue from multiple angles. He’s a mental health advocate who farms part-time near the central Iowa town of Boone. He and his brother-in-law raise corn and soybeans on the 500-acre farm where Haglund grew up. His family has farmed in the area since the 1880s. His parents hung on despite going into bankruptcy during the 1980s farm crisis, and he embraces his role as caretaker of their legacy.

Haglund is trained as an alcohol and drug addiction counselor, and he co-hosts an Iowa podcast about the need to improve mental health care.

He said it can be stressful to run any kind of family business. But farmers have a particularly strong emotional tie to their heritage, which keeps many in the profession.

“Let’s be honest: Farming at all these days isn’t necessarily a good financial decision,” he said.

Farmers traditionally have valued self-sufficiency, he said. They try to solve their own problems, whether it’s a busted tractor or a debilitating bout of anxiety.

“With the older generation, it’s still, ‘Suck it up and get over it,’” Haglund said. Many younger people seem more willing to talk about mental health, he said. But in rural areas, many lack access to mental health care.

Farmers’ suicide risk is also heightened by many of them owning guns, which provide an immediate means to act on deadly impulses, Haglund said.

Guns are an accepted part of rural life, in which they are seen as a useful tool to control pests, he said. “You can’t go into a rural community and say, ‘We’re going to take your guns away,’” he said. But a trusted therapist or friend might suggest that a depressed person temporarily hand over their guns to someone else who can safely store them.

Haglund said health care professionals shouldn’t be the only ones learning how to address mental stresses. He encourages the public to look into “mental health first aid,” a national effort to spread knowledge about symptoms of struggle and how they can be countered.

A 2023 review of studies on farmer suicides in multiple countries, including the U.S., cited cultural and economic stresses.

“Farmers who died by suicide, particularly men, were described as hard-working, strong, private people who took great pride in being the stoic breadwinners of their families. They were often remembered as members of a unique and fading culture who were poorly understood by outsiders,” wrote the authors, from the University of Alberta in Canada.

Rebecca Purc-Stephenson, a psychology professor who helped write the paper, said health professionals face two challenges: persuading farmers to seek help for mental stress, then encouraging them to keep coming back for therapy.

Back at the training in Iowa, instructors urged mental health professionals to have flexible schedules, and to be understanding when farmers postpone appointments at the last minute.

Maybe one of their animals is sick and needs attention. Maybe a machine broke and needs to be fixed immediately. Maybe the weather is perfect for planting or harvesting.

“Time is money,” said Brown, the therapist leading the training.

The session’s lessons included what to ask and not ask when meeting farmers. A big no-no is inquiring right away about how much land they are working. “If you ask them how many acres they’re farming, that’s like asking to see their bank account,” warned Rich Gassman, director of Iowa’s Center for Agricultural Safety and Health, who assisted with the lesson.

It would be better to start by asking what they enjoy about farming, the instructors said.

Many farmers also need to talk through emotional issues surrounding when, how, or even if the next generation will take over the family operation.

Tim Christensen, a farm management specialist for Iowa State University Extension and Outreach, said some standard advice on how to deal with stress could backfire with farmers.

For example, he said, a health care professional should never advise a farmer to relax by taking a couple of weeks off. Most of them can’t get away from their responsibilities for that long, he said.

“There’s a common saying on the farm: No good vacation goes unpunished.”

Warning Signs of Mental Struggle

The American Foundation for Suicide Prevention lists these signs that a person might be considering suicide:

• The person talks about killing themselves, feeling hopeless, having no reason to live, being a burden to others, feeling trapped, or having unbearable pain.
• The person increases their use of alcohol or drugs, sleeps too much or too little, displays fatigue or aggression, withdraws from activities and family and friends, visits or calls people to say goodbye, gives away possessions, or searches online for a way to end their life.
• People considering suicide often seem depressed, anxious, irritable, angry, ashamed, or uninterested in activities. In some cases, they may appear to feel sudden relief or improvement in their mood.
• People in crisis can reach the national 988 Suicide & Crisis Lifeline by calling or texting “988.”

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As of May 30, only three people in the United States had tested positive after being exposed to a wave of bird flu spreading among cows. Those people, dairy farm workers in Texas and Michigan, experienced eye irritation. One of them also had a cough and sore throat.

Scientists warn the virus could mutate to spread from person to person like the seasonal flu, which could spark a pandemic. By keeping tabs on farmworkers, researchers could track infections, learn how dangerous they are, and be alerted if the virus becomes more infectious.

But people generally get tested when they seek treatment for illnesses. Farmworkers rarely do that, because many lack health insurance and paid sick leave, said Elizabeth Strater, director of strategic campaigns for the national group United Farm Workers. They are unlikely to go to a doctor unless they become very ill.

Strater said about 150,000 people work in U.S. dairies. She said many worker advocates believe the virus has spread to more people than tests are showing. “The method being used to surveil at-risk workers has been very passive,” she said.

Federal officials told reporters May 22 that just 40 people connected to U.S. dairy farms had been tested for the virus, although others are being “actively monitored” for symptoms.

Federal authorities recently announced they would pay farmworkers $75 each to be tested for the virus, as part of a new program that also offers incentives for farm owners to allow testing of their dairy herds.

Officials of the federal Centers for Disease Control and Prevention said they recognize the importance of gaining cooperation and trust from front-line dairy employees.

CDC spokesperson Rosa Norman said in an email that the incentive payment compensates workers for their time contributing to the monitoring of how many people are infected, how sick they become, and whether humans are spreading the virus to each other.

She noted the CDC believes the virus currently poses a low risk to public health.

But Strater is skeptical of the incentive for farmworkers to be checked for the virus. If a worker tests positive, they’d likely be instructed to go to a clinic then stay home from work. She said they couldn’t afford to do either.

“That starts to sound like a really bad deal for 75 bucks, because at the end of the week, they’re supposed to feed their families,” she said.

Katherine Wells, director of public health in Lubbock, Texas, said that in her state, health officials would provide short-term medical care, such as giving farmworkers the flu treatment Tamiflu. Those arrangements wouldn’t necessarily cover hospitalization if it were needed, she said.

She said the workers’ bigger concern appears to be that they would have to stay home from work or might even lose their jobs if they tested positive.

Many farmworkers are from other countries, and they often labor in grueling conditions for little pay.

They may fear attention to cases among them will inflame anti-immigrant fervor, said Monica Schoch-Spana, a medical anthropologist at the Johns Hopkins Center for Health Security.

Societies have a long history of blaming marginalized communities for the spread of contagious diseases. Latino immigrants were verbally attacked during the H1N1 “swine flu” pandemic in 2009, for example, and some media personalities used the outbreak to push for a crackdown on immigration.

Bethany Boggess Alcauter, director of research and public health programs at the National Center for Farmworker Health, said many workers on dairy farms have been told very little about this new disease spreading in the cows they handle. “Education needs to be a part of testing efforts, with time for workers to ask questions,” she said.

These conversations should be conducted in the farmworkers’ language, with people they are likely to trust, she said.

Georges Benjamin, executive director of the American Public Health Association, said public health officials must make clear that workers’ immigration status will not be reported as part of the investigation into the new flu virus. “We’re not going to be the police,” he said.

Dawn O’Connell, an administrator at the Department of Health and Human Services, said in a press conference May 22 that nearly 5 million doses of a vaccine against H5N1, the bird flu virus circulating in cattle, are being prepared, but that officials have not decided whether the shots will be offered to farmworkers when they’re ready later this year.

The CDC asked states in early May to share personal protective equipment with farm owners, to help them shield workers from the bird flu virus. State health departments in California, Texas, and Wisconsin, which have large dairy industries, all said they have offered to distribute such equipment.

Chris Van Deusen, a Texas health department spokesperson, said four dairy farms had requested protective equipment from the state stockpile. He said other farms may already have had what they needed. Spokespeople for the California and Wisconsin health departments said they did not immediately receive requests from farm owners for the extra equipment.

Strater, the United Farm Workers official, said protective equipment offerings need to be practical.

Most dairy workers already wear waterproof aprons, boots, and gloves, she said. It wouldn’t be realistic to expect them to also wear N95 face masks in the wet, hot conditions of a milking operation, she said. Plastic face shields seem like a better option for that environment, especially to prevent milk from spraying into workers’ eyes, where it could cause infection, she said.

Other types of agricultural workers, including those who work with chickens, also face potential infection. But scientists say the version of the virus spreading in cows could be particularly dangerous, because it has adapted to live in mammals.

Strater said she’s most worried about dairy workers, who spend 10 to 12 hours a day in enclosed spaces with cows.

“Their faces are approximately 5 inches away from the milk and the udders all day long,” she said. “The intimacy of it, where their face is so very close to the infectious material, is different.”

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Hasta ahora, solo dos personas en Estados Unidos han dado positivo después de estar expuestas a una ola de gripe aviar que se está propagando entre vacas. Estas personas, trabajadores de granjas lecheras en Texas y Michigan, experimentaron irritación en los ojos.

Los científicos advierten que el virus podría mutar para propagarse de persona a persona como la gripe estacional, lo que podría desencadenar una pandemia. Monitoreando a los trabajadores agrícolas, los investigadores podrían rastrear infecciones, aprender cuán peligrosas son y estar alertas si el virus se vuelve más contagioso.

Pero las personas generalmente se hacen pruebas cuando buscan tratamiento para enfermedades. Y los trabajadores agrícolas rara vez lo hacen, porque muchos no tienen seguro médico ni licencia por enfermedad remunerada, dijo Elizabeth Strater, directora de campañas estratégicas del grupo nacional United Farm Workers.

Es poco probable que vayan al médico a menos que se enfermen mucho.

Strater dijo que aproximadamente 150,000 personas trabajan en tambos en el país. Agregó que muchos defensores de estos trabajadores creen que el virus se ha propagado a más personas de las que muestran las pruebas. “El método que se está utilizando para vigilar a los trabajadores en riesgo ha sido muy pasivo”, dijo.

El 22 de mayo, funcionarios federales dijeron a periodistas que solo 40 personas relacionadas con tambos habían sido evaluadas para el virus, aunque otras están siendo “monitoreadas activamente” para detectar síntomas.

Las autoridades federales anunciaron recientemente que pagarían $75 a cada trabajador agrícola para que se hiciera la prueba para detectar la gripe aviar, como parte de un nuevo programa que también ofrece incentivos para que los propietarios de granjas permitan la prueba en sus rebaños lecheros.

Oficiales de los Centros para el Control y Prevención de Enfermedades (CDC) dijeron que reconocen la importancia de obtener cooperación y confianza de los empleados lecheros de primera línea.

Rosa Norman, vocera de los CDC, dijo en un correo electrónico que el pago es un incentivo que compensa a los trabajadores por su tiempo contribuyendo al monitoreo de cuántas personas están infectadas, cuánto se enferman y si el virus se está propagando entre humanos.

Señaló que los CDC creen que el virus actualmente representa un bajo riesgo para la salud pública.

Pero Strater es escéptica respecto al incentivo para que los trabajadores agrícolas se hagan la prueba para detectar el virus. Si un trabajador da positivo, probablemente se le indicaría que vaya a una clínica, y luego que se quedara en casa. Asegura que no podrían permitirse ninguna de las dos cosas.

“Eso empieza a sonar como un trato muy malo por $75, porque al final de la semana, se supone que deben alimentar a sus familias”, dijo.

Katherine Wells, directora de salud pública en Lubbock, Texas, dijo que en su estado, los funcionarios de salud ofrecerían atención médica de corto plazo, como dar a los trabajadores agrícolas el tratamiento con el antigripal Tamiflu. Este acuerdo no necesariamente cubriría la hospitalización si fuera necesaria, agregó.

Expresó que la mayor preocupación de los trabajadores parece ser que tendrían que quedarse en casa o podrían incluso perder sus trabajos si dan positivo.

Muchos trabajadores agrícolas son de otros países y a menudo trabajan en condiciones agotadoras, por muy poco dinero.

También pueden temer que el foco de atención en ellos reavive el fervor anti-inmigrante, dijo Monica Schoch-Spana, antropóloga médica del Centro de Seguridad Sanitaria de Johns Hopkins.

Las sociedades tienen una larga historia de culpar a las comunidades marginadas por la propagación de enfermedades contagiosas. Por ejemplo, los inmigrantes latinos fueron insultados durante la pandemia de gripe H1N1, la gripe porcina, en 2009, y algunas personalidades de los medios usaron el brote para presionar por una campaña anti inmigrante.

Bethany Boggess Alcauter, directora de programas de investigación y salud pública en el Centro Nacional de Salud para Trabajadores Agrícolas, dijo que muchos trabajadores en tambos han recibido muy poca información sobre esta nueva enfermedad que se está propagando entre las vacas que manejan. “La educación necesita ser parte de los esfuerzos por las pruebas, con tiempo para que los trabajadores hagan preguntas”, dijo.

Estas conversaciones deben ser en el idioma de los trabajadores agrícolas, con personas en las que sea más probable que confíen, dijo.

Georges Benjamin, director ejecutivo de la Asociación Americana de Salud Pública, dijo que los funcionarios deben dejar claro que el estatus migratorio de los trabajadores no será reportado como parte de la investigación sobre el nuevo virus de la gripe. “No vamos a ser la policía”, dijo.

Dawn O’Connell, administradora en el Departamento de Salud y Servicios Humanos, dijo en una conferencia de prensa el 22 de mayo que se están preparando casi 5 millones de dosis de una vacuna contra el H5N1, el virus de la gripe aviar que circula entre el ganado, pero que los funcionarios no han decidido si las inyecciones se ofrecerán a los trabajadores agrícolas cuando estén listas más adelante este año.

A principios de mayo, los CDC pidieron a los estados que compartieran equipo de protección personal con los propietarios de granjas, para ayudarlos a proteger a los trabajadores del virus de la gripe aviar. Los departamentos de salud estatales en California, Texas y Wisconsin, que tienen grandes industrias lecheras, dijeron que han ofrecido distribuir estos equipos.

Chris Van Deusen, vocero del Departamento de Salud de Texas, dijo que cuatro granjas lecheras habían solicitado equipo de protección del stock estatal. Dijo que otras granjas tal vez ya tienen lo que necesitan. Los voceros de los departamentos de salud de California y Wisconsin dijeron que no recibieron pedidos inmediatos de los propietarios de granjas para obtener equipo adicional.

Strater, la funcionaria de United Farm Workers, dijo que las ofertas de equipo de protección deben ser prácticas.

La mayoría de los trabajadores de la industria lechera ya usan delantales impermeables, botas y guantes, dijo. No sería realista esperar que también usen mascarillas N95 en las condiciones húmedas y calurosas de una operación de ordeñe, dijo. Los protectores faciales de plástico parecen una mejor opción para ese entorno, especialmente para evitar que la leche salpique en los ojos de los trabajadores, donde podría causar una infección, dijo.

Otros tipos de trabajadores agrícolas, incluidos aquellos que trabajan con pollos, también enfrentan posibles infecciones. Pero los científicos dicen que la versión del virus que se está propagando en el ganado podría ser particularmente peligrosa, porque ya se ha adaptado para vivir en mamíferos.

Strater dijo que le preocupa más los trabajadores en tambos, que pasan de 10 a 12 horas al día en espacios cerrados con vacas.

“Sus caras están aproximadamente a 5 pulgadas de la leche y las ubres durante todo el día”, dijo. “La cercanía, en donde sus caras están tan cerca del material infeccioso, es diferente”.

¿Trabajas en un tambo? ¿Te preocupa la exposición a la gripe aviar en el trabajo? KFF Health News quiere saber sobre tí. Cuéntanos tus experiencias aquí, para nuestras historias.

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The companies see a business opportunity in the shortage of inpatient beds for people with severe mental illness.

The scarcity of inpatient psychiatric care is evident nationwide, especially in rural areas. People in crisis often are held for days or weeks in emergency rooms or jails, then transported far from their hometowns when a bed opens in a distant hospital.

Eight nonprofit Iowa hospitals have shuttered their psychiatric units since 2007, often citing staffing and financial challenges. Iowa closed two of its four mental health institutions in 2015.

The state now ranks last in the nation for access to state-run psychiatric hospitals, according to the Treatment Advocacy Center. The national group, which promotes improving care for people with severe mental illness, recommends states have at least 50 state-run psychiatric beds per 100,000 people. Iowa has just two such beds per 100,000 residents, the group said.

Two out-of-state companies have developed psychiatric hospitals in Iowa in the past four years, and now a third company has obtained a state “certificate of need” to open a 60-bed facility in Grinnell.

Before 2020, Iowa had no privately owned, free-standing psychiatric hospitals. But several national companies specialize in developing such facilities, which treat people in crisis from conditions such as depression, schizophrenia, or bipolar disorder, sometimes compounded by drug or alcohol abuse. One of the companies operating in Iowa, Universal Health Services, says it has mental health facilities in 39 states.

Lisa Dailey, the Treatment Advocacy Center’s executive director, said that for-profit hospitals don’t necessarily provide worse care than nonprofit ones but that they tend to be less transparent and more motivated by money. “Private facilities are private,” she said. “As a result, you may not have a great insight into why they make the decisions that they make.”

Dailey said solid data on privately run mental health hospitals nationwide is scarce. But she has heard for-profit companies have recently set up free-standing psychiatric hospitals in several states, including California. The California Department of Public Health confirmed three such facilities have opened there since 2021, in Aliso Viejo, Madera, and Sacramento.

The latest Iowa psychiatric hospital would be housed in a vacant nursing home on the outskirts of Grinnell, a college town of 9,500 people in a rural region of the state. The project’s developers noted there are no other inpatient mental health facilities in Poweshiek County, where Grinnell is located, or in any of the eight surrounding counties. The nearest inpatient mental health facilities are 55 miles west in Des Moines.

The Indiana-based company proposing the hospital, Hickory Recovery Network, primarily runs addiction treatment centers in Indiana. But it opened psychiatric hospitals in Ohio and Texas in 2023 and 2024, and it told Iowa regulators it could open the Grinnell hospital by August.

An affiliated company ran the facility as a nursing home, called the Grinnell Health Care Center, until 2022, according to a Hickory Recovery Network filing with Iowa regulators.

Medicare rated the nursing home’s overall quality at just two out of five stars. And in 2020, the facility was suspended indefinitely from Iowa’s Medicaid program because of billing issues, state records show.

Officials from Hickory Recovery Network responded only briefly to KFF Health News inquiries, including about how the former Iowa nursing home’s spotty record could affect the proposed psychiatric hospital.

In a short telephone interview in February, Melissa Durkin, the company’s chief operating officer, declined to say who owns Hickory Recovery Network.

Durkin denied in the interview that her organization was associated with the company that ran the defunct and troubled Grinnell nursing home.

However, Hickory Recovery’s application for a certificate of need refers to the nursing home operator as “Hickory’s affiliated company.” In testimony before Iowa regulators, Durkin made a similar reference as she expressed confidence her organization could find sufficient staff to reopen the facility as a psychiatric hospital. “We have a history with that building. We operated a nursing home there before,” she said at the video-recorded hearing.

Durkin said in the interview that company leaders had not decided for sure to redevelop the vacant Iowa nursing home into a psychiatric hospital, although they twice went through the complicated process of applying for a state “certificate of need” for the project. The first attempt was stymied in 2023 by a tie vote of the board that considers such permits, which are a major hurdle for large health care projects. The second application was approved by a unanimous vote after a hearing on Jan. 25.

Keri Lyn Powers, a Hickory executive, told regulators the company planned to spend $1.5 million to remodel the building. The main changes would include making rooms safe for people who might be suicidal, she said.

The company predicted in its application that 90% of the hospital’s patient revenues would come from Medicare or Medicaid, public programs for seniors or people who have low incomes or disabilities. It doesn’t mention that the nursing home was suspended from Iowa’s Medicaid program, which covers about half of the state’s nursing home residents.

Iowa authorities suspended the Grinnell Health Care Center nursing home in 2020 for failing to repay nearly $25,000 in overpayments from Medicaid, state records show. When the nursing home closed in 2022, its former medical director told the local newspaper part of the reason for its demise was its inability to collect Medicaid reimbursements. Iowa administrators recently notified the owners that the former nursing home owed $284,676 to Medicaid. A state spokesperson said in March that neither amount had been repaid.

The proposal to reopen the building as a psychiatric hospital won support from patient advocates, Grinnell’s nonprofit community hospital, and the regional mental health coordinator.

The only opposition at the state hearing came from Kevin Pettit, leader of one of Iowa’s two other private free-standing psychiatric hospitals. Pettit is chief executive officer of Clive Behavioral Health Hospital, a 100-bed facility in suburban Des Moines that opened in 2021. Pettit told regulators he supports expanding mental health services, but he predicted the proposed Grinnell facility would struggle to hire qualified employees.

He said despite strong demand for care, many Iowa psychiatric facilities are limiting admissions. “The beds exist, but they’re not actually open, … because we’re dealing with staffing issues throughout the state,” Pettit testified.

Overall, Iowa has 901 licensed inpatient mental health beds, including in psychiatric units at community hospitals, in free-standing psychiatric hospitals, and in the two remaining state mental health institutes, according to the Iowa Department of Health and Human Services. But as of January, just 738 of those beds were staffed and being used.

Pettit’s facility is run by Pennsylvania-based Universal Health Services in partnership with MercyOne, a hospital system based in the Des Moines area.

In an interview, Pettit said his hospital only has enough staff to use about half of its beds. He said it’s especially difficult to recruit nurses and therapists, even in an urban area with a relatively robust labor supply.

State inspectors have cited problems at the Clive facility, including four times declaring that deficiencies put patients’ safety in “immediate jeopardy.” Those issues included insufficient staff to properly monitor patients and insufficient safeguards to prevent access to items patients could use to choke or cut themselves.

Pettit said such citations are not unusual in the tightly regulated industry. He said the organization is committed to patient safety. “We value the review by our regulatory entities during the survey process and view any finding as an opportunity for continuous improvement of our operations,” he wrote in an email.

Iowa’s other privately owned psychiatric hospital, Eagle View Behavioral Health in Bettendorf, also has been cited by state inspectors. The 72-bed hospital was purchased in 2022 by Summit BHC from Strategic Behavioral Health, which opened the facility in 2020. Both companies are based in Tennessee.

State inspectors have cited the Bettendorf facility twice for issues posing “immediate jeopardy” to patient safety. In 2023, inspectors cited the facility for insufficient supervision of patients, “resulting in inappropriate sexual activity” between adult and adolescent patients. In 2021, the facility was cited for insufficient safety checks to prevent suicide attempts and sexual misconduct.

Eagle View officials did not respond to requests for comment.

Advocates for Iowa patients have supported the development of free-standing psychiatric hospitals.

Leslie Carpenter of Iowa City, whose adult son has been hospitalized repeatedly for severe mental illness, spoke in favor of the Grinnell facility’s application for a certificate of need.

In an interview afterward, Carpenter said she was optimistic the new facility could find enough staff to help address Iowa’s critical shortage of inpatient psychiatric care.

She said she would keep a close eye on how the new facility fares. “I think if a company were willing to come in and do the job well, it could be a game changer.”

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

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