But the CEO of Herbruck’s Poultry Ranch wasn’t sure how the family egg producer (one of the largest in the U.S., in business for over three generations) was going to get through it, financially or emotionally. One staffer broke down in Herbruck’s office in tears.

“The mental toll on our team of dealing with that many dead chickens is just, I mean, you can’t imagine it,” Herbruck said. “I didn’t sleep. Our team didn’t sleep.”

The stress of watching tens of thousands of sick birds die of avian flu each day, while millions of others waited to be euthanized, kept everyone awake.

In April 2024, as his first hens tested positive for the highly pathogenic avian influenza H5N1 virus, Herbruck turned to the tried-and-true U.S. Department of Agriculture playbook, the “stamping-out” strategy that helped end the 2014-15 bird flu outbreak, which was the largest in the U.S. until now.

Within 24 to 48 hours of the first detection of the virus, state and federal animal health officials work with farms to cull infected flocks to reduce the risk of transmission. That’s followed by extensive disinfection and months of surveillance and testing to make sure the virus isn’t still lurking somewhere on-site.

Since then, egg farms have had to invest millions of dollars into biosecurity. For instance, employees shower in and shower out, before they start working and after their shifts end, to prevent spreading any virus. But their efforts have not been enough to contain the outbreak that started three years ago.

This time, the risk to human health is only growing, experts say. Sixty-six of the 67 total human cases in the United States have been just since March, including the nation’s first human death, reported last month.

“The last six months have accelerated my concern, which was already high,” said Nahid Bhadelia, an infectious diseases physician and the founding director of Boston University’s Center on Emerging Infectious Diseases.

Controlling this virus has become more challenging, precisely because it’s so entrenched in the global environment, spilling into mammals such as dairy cows, and affecting roughly 150 million birds in commercial and backyard flocks in the U.S.

Because laying hens are so susceptible to the H5N1 virus, which can wipe out entire flocks within days of the first infection, egg producers have been on the front lines in the fight against various bird flu strains for years. But this moment feels different. Egg producers and the American Egg Board, an industry group, are begging for a new prevention strategy.

Many infectious disease experts agree that the risks to human health of continuing current protocols are unsustainable, because of the strain of bird flu driving this outbreak.

“The one we’re battling today is unique,” said David Swayne, former director of the Southeast Poultry Research Laboratory at the USDA’s Agricultural Research Service and a leading national expert in avian influenza.

“It’s not saying for sure there’s gonna be a pandemic” of H5N1, Swayne said, “but it’s saying the more human infections, the spreading into multiple mammal species is concerning.”

For Herbruck, it feels like war. Ten months after Herbruck’s Poultry Ranch was hit, the company is still rebuilding its flocks and rehired most of the 400 workers it laid off.

Still, he and his counterparts in the industry live in fear, watching other farms get hit two, even three times in the past few years.

“I call this virus a terrorist,” he said. “And we are in a battle and losing, at the moment.”

When Biosecurity Isn’t Working … or Just Isn’t Happening

So far, none of the 23 people who contracted the disease from commercial poultry have experienced severe cases, but the risks are still very real. The first human death was a Louisiana patient who had contact with both wild birds and backyard poultry. The person was over age 65 and reportedly had underlying medical conditions.

And the official message to both backyard farm enthusiasts and mega-farms has been broadly the same: Biosecurity is your best weapon against the spread of disease.

But there’s a range of opinions among backyard flock owners about how seriously to take bird flu, said Katie Ockert, a Michigan State University Extension educator who specializes in biosecurity communications.

Skeptics think that “we’re making a mountain out of a molehill,” Ockert said, or that “the media is maybe blowing it out of proportion.” This means there are two types of backyard poultry enthusiasts, Ockert said: those doing great biosecurity, and those who aren’t even trying.

“I see both,” she said. “I don’t feel like there’s really any middle ground there for people.”

And the challenges of biosecurity are completely different for backyard coops than massive commercial barns: How are hobbyists with limited time and budgets supposed to create impenetrable fortresses for their flocks, when any standing water or trees on the property could draw wild birds carrying the virus?

Rosemary Reams, an 82-year-old retired educator in Ionia, Michigan, grew up farming and has been helping the local 4-H poultry program for years, teaching kids how to raise poultry. Now, with the bird flu outbreak, “I just don’t let people go out to my barn,” she said.

Reams even swapped real birds with fake ones for kids to use while being assessed by judges at recent 4-H competitions, she said.

“We made changes to the fair last year, which I got questioned about a lot. And I said, ‘No, I gotta think about the safety of the kids.’”

Reams was shocked by the news of the death of the Louisiana backyard flock owner. She even has questioned whether she should continue to keep her own flock of 20 to 30 chickens and a pair of turkeys.

“But I love ’em. At my age, I need to be doing it. I need to be outside,” Reams said. “That’s what life is about.” She said she’ll do her best to protect herself and her 4-H kids from bird flu.

Even “the best biosecurity in the world” hasn’t been enough to save large commercial farms from infection, said Emily Metz, president and CEO of the American Egg Board.

The egg industry thought it learned how to outsmart this virus after the 2014-15 outbreak. Back then, “we were spreading it amongst ourselves between egg farms, with people, with trucks,” Metz said. So egg producers went into lockdown, she said, developing intensive biosecurity measures to try to block the routes of transmission from wild birds or other farms.

Metz said the measures egg producers are taking now are extensive.

“They have invested hundreds of millions of dollars in improvements, everything from truck washing stations — which is washing every truck from the FedEx man to the feed truck — and everything in between: busing in workers so that there’s less foot traffic, laser light systems to prevent waterfowl from landing.”

Lateral spread, when the virus is transmitted from farm to farm, has dropped dramatically, down from 70% of cases in the last outbreak to just 15% as of April 2023, according to the USDA.

And yet, Metz said, “all the measures we’re doing are still getting beat by this virus.”

The Fight Over Vaccinating Birds

Perhaps the most contentious debate about bird flu in the poultry industry right now is whether to vaccinate flocks.

Given the mounting death toll for animals and the increasing risk to humans, there’s a growing push to vaccinate certain poultry against avian influenza, which countries like China, Egypt, and France are already doing.

In 2023, the World Organization for Animal Health urged nations to consider vaccination “as part of a broader disease prevention and control strategy.”

Swayne, the avian influenza expert and poultry veterinarian, works with WOAH and said most of his colleagues in the animal and public health world “see vaccination of poultry as a positive tool in controlling this panzootic in animals,” but also as a tool that reduces chances for human infection, and chances for additional mutations of the virus to become more human-adapted.

But vaccination could put poultry meat exporters (whose birds are genetically less susceptible to H5N1 than laying hens) at risk of losing billions of dollars in international trade deals. That’s because of concerns that vaccination, which lowers the severity of disease in poultry, could mask infections and bring the virus across borders, according to John Clifford, a former chief veterinary officer of the USDA. Clifford is currently an adviser to the USA Poultry and Egg Export Council.

“If we vaccinate, we not only lose $6 billion potentially in exports a year,” Clifford said. “If they shut us off, that product comes back on the U.S. market. Our economists looked at this and said we would lose $18 billion domestically.”

Clifford added that would also mean the loss of “over 200,000 agricultural jobs.”

Even if those trade rules changed to allow meat and eggs to be harvested from vaccinated birds, logistical hurdles remain.

“Vaccination possibly could be on the horizon in the future, but it’s not going to be tomorrow or the next day, next year, or whatever,” Clifford said.

Considering just one obstacle: No current HPAI vaccine is a perfect match for the current strain, according to the USDA. But if the virus evolves to be able to transmit efficiently from human to human, he said, “that would be a game changer for everybody, which would probably force vaccination.”

Last month, the USDA announced it would “pursue a stockpile that matches current outbreak strains” in poultry.

“While deploying a vaccine for poultry would be difficult in practice and may have trade implications, in addition to uncertainty about its effectiveness, USDA has continued to support research and development in avian vaccines,” the agency said.

At this point, Metz argued, the industry can’t afford not to try vaccination, which has helped eradicate diseases in poultry before.

“We’re desperate, and we need every possible tool,” she said. “And right now, we’re fighting this virus with at least one, if not two, arms tied behind our back. And the vaccine can be a huge hammer in our toolbox.”

But unless the federal government acts, that tool won’t be used.

Industry concerns aside, infectious diseases physician Bhadelia said there’s an urgent need to focus on reducing the risk to humans of getting infected in the first place. And that means reducing “chances of infections in animals that are around humans, which include cows and chickens. Which is why I think vaccination to me sounds like a great plan.”

The lesson “that we keep learning every single time is that if we’d acted earlier, it would have been a smaller problem,” she said.

This article is from a partnership that includes Michigan Public, NPR, and KFF Health News.

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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“Hi! I’m Dr. Mona!” she said warmly. “Any chance you guys live in Flint?” She learned the family is from neighboring Grand Blanc.

“That’s so sad!” Hanna said. “You should move to Flint! And have another baby! And you could be part of the Rx Kids program!” The parents chuckled politely. But the doctor was not kidding.

Billed as the first-ever citywide cash aid program for pregnant moms and babies, Rx Kids gives Flint residents $1,500 mid-pregnancy, and $500 each month for the baby’s first year. There are no strings attached. No income limits. And it’s universal; nearly every baby born since the program launched in January is enrolled.

Parents who bring their babies in for checkups at this clinic rattle off the ways the money has helped, from the cribs, diapers, clothes, and wipes they’ve bought to how it’s “kept them afloat” during maternity leave or provided crucial income when a spouse died.

But the true goal of Rx Kids goes far beyond Flint, as Hanna acknowledged, scooping up one of the Rx Kids babies in an exam room. “Do you think we should do this for babies everywhere? What do you think?” she asked, cooing. The baby gurgled happily, smiling. “That was an affirmative yes.”

Cash Payments as a Tool To Reduce Child Poverty

Many other countries, including Austria, Belgium, Canada, France, Germany, Ireland, Norway, Sweden, and the United Kingdom, already offer a child cash benefit. The U.S. essentially did, too, during the coronavirus pandemic: The 2021 expanded child tax credit gave low- and middle-income families (including those previously excluded because of insufficient income) hundreds of dollars per kid in direct, monthly payments for six months.

The child poverty rate fell to a historic low. But the expanded program expired at the end of 2021 and Congress did not renew it. The child poverty rate went back up.

For Luke Shaefer, director of the Poverty Solutions initiative at the University of Michigan’s Ford School of Public Policy and a longtime advocate of child cash benefits, it was “the most brutal day” of his career.

Soon after, he got an email from Hanna asking if he wanted to collaborate on the program that would become Rx Kids. The program’s goals go beyond cash aid for Michigan families: It is also aimed at getting donors, lawmakers, and voters excited about how child cash benefits could help their communities.

The list of the recently converted includes Republican state Sen. John Damoose, who has become an outspoken advocate for expanding Rx Kids. Referring to himself as “a pro-life person,” Damoose said, “I sure as heck better be concerned about making it easier for mothers to make the decision to have their children.” He said the Republican Party needs to get serious about supporting programs like Rx Kids. “We’ve been accused for years about being pro-birth, not pro-life. And I think that’s not without merit. We need to put our money where our mouth is and support these children and support their mothers.”

Already, what once seemed like a moon shot is gaining traction: Shaefer and Hanna say their communications with Vice President Kamala Harris’ presidential campaign helped shape Harris’ “baby bonus” proposal. President-elect Donald Trump’s campaign also supported expanding the child tax credit.

Meanwhile, Michigan has budgeted some $20 million in state Temporary Assistance for Needy Families cash to partially fund an expansion of Rx Kids to a short list of communities, if those areas can raise local matching funds. Those areas include rural communities like Michigan’s remote eastern Upper Peninsula, part of which is in Damoose’s district. “We want to make the tent as big as possible,” Hanna said.

But some Upper Peninsula health officials were initially wary. Each new Rx Kids community will need to raise millions of dollars in private donations to start and sustain the program in their community. “It could be a good thing,” Leann Espinoza, maternal-infant health program manager for the eastern Upper Peninsula, said in August. “But I’m not getting my hopes up. I know that sounds terrible.”

Upper Peninsula Families ‘Fall Through the Cracks’

In the wood-paneled rec room of the Clark Township Community Center, Espinoza broke the news to her team this summer: Rx Kids is not a program the eastern Upper Peninsula will be able to fund on its own.

It’s about “$3 million that we would need to raise,” she said, looking at three other LMAS District Health Department staff members.

Tonya Winberg, the public health nurse for Mackinac County, looked stunned. “It’s just, where does that $3 million come from?” Winberg asked. Other potential Rx Kids expansion sites, like Kalamazoo, have wealthy private foundations that can fund the program. The eastern Upper Peninsula does not.

“And how do we sustain it?” Espinoza added. “We hate to start programs, and then the funding is gone and we have to tell people, ‘It’s not here anymore; we can’t do it anymore.’”

The ruggedly beautiful and densely forested Upper Peninsula is used to feeling forgotten. There’s a running joke about how often it’s mislabeled as Canada or Wisconsin on maps. It has about a third of Michigan’s land mass, but just 3% of its residents. The sheer scale and sparse population mean options for food, housing, and child care are limited. Poverty rates are higher than the state average in much of Espinoza’s territory, and the region has some of the highest rates of newborns suffering from prebirth drug exposure in the state, according to the state health department.

At the community center, Espinoza and her colleagues start listing all the ways Rx Kids would be a lifesaver for families in the Upper Peninsula, many of whom have some income and some resources but “don’t make enough to make it,” Espinoza said. “The fall-through-the-cracks families. And those are the ones that I really, really, really think this program would benefit, especially up here.”

Espinoza’s next meeting was with one of those families. Jessica Kline and her 18-month-old daughter, Aurora, live in Munising, a tourist town on Lake Superior. “She’s got a big personality, and her hair is red, so she came with a warning label,” Kline said of her daughter, laughing.

Aurora is a tiny force, speeding around the family’s apartment, unfazed by the nasal tube that connects her to an oxygen machine. She was born early, at just 24 weeks gestation, weighing less than 2 pounds. No hospital in the Upper Peninsula was equipped to care for a preemie that young. So Aurora and her parents spent seven months at a hospital in Ann Arbor, five hours south of their home. “We didn’t have a reliable vehicle,” Kline said. “We didn’t have a source of income.” Hospital social services provided $19 a day for food, which Kline would save up to buy supplies for Aurora.

When they finally got Aurora home to the Upper Peninsula, their house had been vandalized, the copper pipes stripped out. Espinoza’s team helped them find housing, and drove them to get groceries. Every day is a series of small battles, from finding the medical supplies Aurora needs to figuring out how to get to a revolving door of specialists hundreds of miles away. Still, Aurora’s dad has a job in town. They’ve got family nearby. They’re making it work, Kline said.

But having a program like Rx Kids could have made a huge difference in her daughter’s first year. “Five hundred dollars a month would have been enough to actually be able to get ourselves on our feet,” she said.

After Espinoza left Kline’s apartment, she drove south to her office in Manistique. It was late. Everyone else had gone home. Espinoza sat at her desk, trying to be pragmatic. She knows Rx Kids would not magically solve the lack of child care and housing and all the other things you need to break the cycle of poverty. But it would fix Kline’s car. It would help.

There will undoubtedly be critics, Espinoza said — people who believe parents will just use this money to buy drugs. “‘What did they do to earn it?’” she imagined them saying. “‘You’re just giving them free money, and they didn’t do anything to get it?’ Because they don’t understand. They don’t understand the barriers. They don’t understand that sometimes the choice isn’t always yours. Like, I’ve talked to moms who desperately want to go to work, and they want to support their family, but there’s no child care. And so they have no other choice.”

Espinoza recently got an update from Rx Kids’ Hanna: Largely because of private foundations outside the Upper Peninsula, the program has raised enough money to fund a “perinatal” version of Rx Kids for five counties in the eastern Upper Peninsula. The perinatal program would provide the $1,500 payment mid-pregnancy, plus $500 a month for a baby’s first three months, rather than the full year. “But the goal really is the full program, so we are still raising money,” Hanna said via email.

“I think it’s fantastic if we even just get the perinatal version to start,” Espinoza said. “That’s more than we had before.”

This article is from a partnership that includes Michigan Public, NPR, and KFF Health News.

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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This story can be republished for free (details).

It was an incredible moment, but also a terrifying one. A court had just denied the Myers’ parental rights to the twins, who were born via surrogate using embryos made from Jordan’s sperm and Tammy’s eggs. (Tammy’s eggs had been frozen before she underwent treatment for breast cancer.)

“In the early hours of their lives, we had no lifesaving medical decision-making power for their care,” Tammy Myers told lawmakers at a Michigan Senate committee hearing in March.

Instead, the state’s surrogacy restrictions required the Myers to legally adopt their biological twins, Eames and Ellison.

“Despite finally being granted legal parenthood of our twins almost two years after they were born, our wounds from this situation remain raw, casting a long shadow over the cherished memories that we missed,” Myers told lawmakers, her voice catching.

Until this spring, Michigan was the only state that had a broad criminal ban on surrogacy. Many families say that ban left them in legal limbo: They were compelled to leave the state to have children; find strangers on Facebook who would carry their child; or, like the Myers, be forced to legally adopt their own biological children.

Gov. Gretchen Whitmer of Michigan signed legislation in April repealing the 1988 criminal ban, legalizing surrogacy contracts and compensated surrogacy after more than three decades. But the legalization is raising fears among conservatives and religious groups, who echo Pope Francis’ concerns that surrogacy exploits women and makes children “the basis of a commercial contract.”

As reproductive technology advanced in recent decades, most states passed laws permitting and regulating surrogacy. But Michigan did not, said Courtney Joslin, a professor at the University of California-Davis School of Law who specializes in family law. Still, those restrictions didn’t prevent Michiganders from having children via surrogacy.

“Criminal bans, or even civil bans, don’t end the practice,” Joslin said. “People are still engaged in surrogacy, and it’s becoming more clear that the effect of a ban is just to leave the parties without any protection. And that includes the person acting as a surrogate.”

In 2009, a couple in western Michigan had to surrender custody of twins after their surrogate decided to keep the babies. The surrogate claimed that she hadn’t been aware of an arrest and a mental health issue in the intended mother’s past. In 2013, a surrogate from Connecticut fled to Michigan to give birth, knowing state law would give her parental rights. She and the intended parents had disagreed over whether to terminate the pregnancy following the discovery of major fetal abnormalities.

The Myers family, however, thought they would be able to avoid any protracted legal fights. They had the full support of their surrogate, Lauren Vermilye, a stranger who’d volunteered to be their surrogate after seeing Tammy’s posts on Facebook. Yet even with Vermilye and her husband, Jonathan, saying that the twins belonged to the Myers, Michigan judges denied the Myers’ request for a prebirth order giving them parental rights.

“As a devoted family already raising our kind, inclusive and gentle-hearted 8-year-old daughter, Corryn, we were forced to prove our worthiness through invasive psychological testing, home visits, and endless meetings to discuss our parenting plan to prove that we were fit to raise our twins, Eames and Ellison,” Tammy Myers told lawmakers in March.

Opponents of Michigan’s repeal of its surrogacy ban distinguish altruistic surrogacy — in which the surrogate mother does not receive any compensation, including for her medical and legal expenses — from a contract for a child.

Legislators in Michigan’s House of Representatives passed bills late last year to allow courts to recognize and enforce surrogacy contracts. These bills allowed parents to compensate surrogates, including for medical and legal expenses. But as the legislation moved forward early this year, religious and conservative groups, and some Republican lawmakers, continued voicing their opposition.

Michigan’s surrogacy laws were not preventing altruistic surrogacy in the state, argued Genevieve Marnon, the legislative director of Right to Life of Michigan, at a state Senate committee hearing in March.

“However, current law does require a legal adoption of a child who is born of one woman and then given to another person,” Marnon said. “That practice is child-protective, to prevent the buying and selling of children, and to ensure children are going to a safe home.”

Michigan’s ban on surrogacy is “in keeping with much of the rest of the world,” Marnon said in March. Several European countries ban or restrict surrogacy, including Italy, which is cracking down on international surrogacy, an arrangement involving a surrogate mother who lives in a different country than the biological parents.

“India, Thailand, and Cambodia had laws similar to those contemplated in these bills, but due to exploitation of their women caused by surrogacy tourism, they changed their laws to stop that,” Marnon told the senators in March.

In January, Pope Francis called for a universal ban on surrogacy, “which represents a grave violation of the dignity of the woman and the child, based on the exploitation of situations of the mother’s material needs,” he said.

Rebecca Mastee, a policy advocate with the Michigan Catholic Conference, told lawmakers that while she acknowledged the suffering of people with infertility, surrogacy can exploit women and treat babies like commodities.

“At the core of such agreements is a contract for a human being,” she said.

“That made my blood boil, hearing that,” said Eric Portenga. He and his husband, Kevin O’Neill, had traveled from their home in Ann Arbor to the Capitol in Lansing to attend the hearings in March.

If you’ve been through the surrogacy process “you know there’s no commodification at all,” Portenga said. “You want a family because you have love to give. And you want to build the love that you have, with your family.”

When Portenga and O’Neill were trying to become fathers, they reached out to surrogacy agencies in other states but were told the process would cost $200,000. “We would have had to have sold the house,” O’Neill said.

Like the Myers, the couple turned to Facebook and social media, “just putting our story out there that we wanted to become dads,” O’Neill said. A friend of a friend, Maureen Farris, reached out to the couple: She’d been wanting to help a family through surrogacy for years, she said. And Farris lived just a few hours south in Ohio, where surrogacy contracts and compensation are legal.

Farris’ contract with Portenga and O’Neill was fairly standard. Both sides had to undergo psychological background checks and have legal representation. The contract also set compensation for Farris, which covered medical and legal fees. The contract stipulated Farris couldn’t travel to Michigan beyond a certain point in her pregnancy because if she’d gone into labor and given birth in the state, she would be considered the legal parent of the child.

That contract, Portenga and O’Neill said, gave Farris more protection and agency than she would have had in Michigan at the time. “They’re carrying a human life inside of them,” O’Neill said of surrogates. “They’re not able to work. Their bodies will be changed forever. They’re getting compensated for the amazing gift they’re giving people.”

After the embryo transfer was successful, Portenga and O’Neill learned Farris was pregnant — with identical triplet girls.

“They came out and just unraveled this huge string of ultrasound photographs and, and that’s when we knew our life had changed,” Portenga said, sitting at home in the family’s kitchen. The girls were born in Ohio — where the dads could be legally named their parents — and then the family of five returned to Michigan.

Today, Sylvie, Parker, and Robin O’Neill are 2 years old, and very busy. Parker is the “leader of the pack,” while Robin is the “brains of the operation” — she can count to 10 but likes to skip the number five. Sylvie is “the most affectionate, the most sensitive, of the three of them,” O’Neill said. “But their bond is so amazing to watch. And we’re so lucky to be their dads.”

This article is from a partnership that includes Michigan Public, NPR, and KFF Health News.

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.

USE OUR CONTENT

This story can be republished for free (details).

Ruckle, who has worked in the neonatal intensive care unit at Ascension Via Christi St. Joseph for two decades, said it was “hard to decipher which was the correct dose” on the medication record. He’d “never seen that happen,” he said, “when we were on the computer system” before the cyberattack.

A May 8 ransomware attack against Ascension, a Catholic health system with 140 hospitals in at least 10 states, locked providers out of systems that track and coordinate nearly every aspect of patient care. They include its systems for electronic health records, some phones, and ones “utilized to order certain tests, procedures and medications,” the company said in a May 9 statement.

More than a dozen doctors and nurses who work for the sprawling health system told Michigan Public and KFF Health News that patient care at its hospitals across the nation was compromised in the fallout of the cyberattack over the past several weeks. Clinicians working for hospitals in three states described harrowing lapses, including delayed or lost lab results, medication errors, and an absence of routine safety checks via technology to prevent potentially fatal mistakes.

Despite a precipitous rise in cyberattacks against the health sector in recent years, a weeks-long disruption of this magnitude is beyond what most health systems are prepared for, said John Clark, an associate chief pharmacy officer at the University of Michigan health system.

“I don’t believe that anyone is fully prepared,” he said. Most emergency management plans “are designed around long-term downtimes that are into one, two, or three days.”

Ascension in a public statement May 9 said its care teams were “trained for these kinds of disruptions,” but did not respond to questions in early June about whether it had prepared for longer periods of downtime. Ascension said June 14 it had restored access to electronic health records across its network, but that patient “medical records and other information collected between May 8” and when the service was restored “may be temporarily inaccessible as we work to update the portal with information collected during the system downtime.”

Ruckle said he “had no training” for the cyberattack.

Back to Paper

Lisa Watson, an intensive care unit nurse at Ascension Via Christi St. Francis hospital in Wichita, described her own close call. She said she nearly administered the wrong medication to a critically ill patient because she couldn’t scan it as she normally would. “My patient probably would have passed away had I not caught it,” she said.

Watson is no stranger to using paper for patients’ medical charts, saying she did so “for probably half of my career,” before electronic health records became ubiquitous in hospitals. What happened after the cyberattack was “by no means the same.”

“When we paper-charted, we had systems in place to get those orders to other departments in a timely manner,” she said, “and those have all gone away.”

Melissa LaRue, an ICU nurse at Ascension Saint Agnes Hospital in Baltimore, described a close call with “administering the wrong dosage” of a patient’s blood pressure medication. “Luckily,” she said, it was “triple-checked and remedied before that could happen. But I think the potential for harm is there when you have so much information and paperwork that you have to go through.”

Clinicians say their hospitals have relied on slapdash workarounds, using handwritten notes, faxes, sticky notes, and basic computer spreadsheets — many devised on the fly by doctors and nurses — to care for patients.

More than a dozen other nurses and doctors, some of them without union protections, at Ascension hospitals in Michigan recounted situations in which they say patient care was compromised. Those clinicians spoke on the condition that they not be named for fear of retaliation by their employer.

An Ascension hospital emergency room doctor in Detroit said a man on the city’s east side was given a dangerous narcotic intended for another patient because of a paperwork mix-up. As a result, the patient’s breathing slowed to the point that he had to be put on a ventilator. “We intubated him and we sent him to the ICU because he got the wrong medication.”

A nurse in a Michigan Ascension hospital ER said a woman with low blood sugar and “altered mental status” went into cardiac arrest and died after staff said they waited four hours for lab results they needed to determine how to treat her, but never received. “If I started having crushing chest pain in the middle of work and thought I was having a big one, I would grab someone to drive me down the street to another hospital,” the same ER nurse said.

Similar concerns reportedly led a travel nurse at an Ascension hospital in Indiana to quit. “I just want to warn those patients that are coming to any of the Ascension facilities that there will be delays in care. There is potential for error and for harm,” Justin Neisser told CBS4 in Indianapolis in May.

Several nurses and doctors at Ascension hospitals said they feared the errors they’ve witnessed since the cyberattack began could threaten their professional licenses. “This is how a RaDonda Vaught happens,” one nurse said, referring to the Tennessee nurse who was convicted of criminally negligent homicide in 2022 for a fatal drug error.

Reporters were not able to review records to verify clinicians’ claims because of privacy laws surrounding patients’ medical information that apply to health care professionals.

Ascension declined to answer questions about claims that care has been affected by the ransomware attack. “As we have made clear throughout this cyber attack which has impacted our system and our dedicated clinical providers, caring for our patients is our highest priority,” Sean Fitzpatrick, Ascension’s vice president of external communications, said via email on June 3. “We are confident that our care providers in our hospitals and facilities continue to provide quality medical care.”

The federal government requires hospitals to protect patients’ sensitive health data, according to cybersecurity experts. However, there are no federal requirements for hospitals to prevent or prepare for cyberattacks that could compromise their electronic systems.

Hospitals: ‘The No.1 Target of Ransomware’

“We’ve started to think about these as public health issues and disasters on the scale of earthquakes or hurricanes,” said Jeff Tully, a co-director of the Center for Healthcare Cybersecurity at the University of California-San Diego. “These types of cybersecurity incidents should be thought of as a matter of when, and not if.”

Josh Corman, a cybersecurity expert and advocate, said ransom crews regard hospitals as the perfect prey: “They have terrible security and they’ll pay. So almost immediately, hospitals went to the No. 1 target of ransomware.”

In 2023, the health sector experienced the largest share of ransomware attacks of 16 infrastructure sectors considered vital to national security or safety, according to an FBI report on internet crimes. In March, the federal Department of Health and Human Services said reported large breaches involving ransomware had jumped by 264% over the past five years.

A cyberattack this year on Change Healthcare, a unit of UnitedHealth Group’s Optum division that processes billions of health care transactions every year, crippled the business of providers, pharmacies, and hospitals.

In May, UnitedHealth Group CEO Andrew Witty told lawmakers the company paid a $22 million ransom as a result of the Change Healthcare attack — which occurred after hackers accessed a company portal that didn’t have multifactor authentication, a basic cybersecurity tool.

The Biden administration in recent months has pushed to bolster health care cybersecurity standards, but it’s not clear which new measures will be required.

In January, HHS nudged companies to improve email security, add multifactor authentication, and institute cybersecurity training and testing, among other voluntary measures. The Centers for Medicare & Medicaid Services is expected to release new requirements for hospitals, but the scope and timing are unclear. The same is true of an update HHS is expected to make to patient privacy regulations.

HHS said the voluntary measures “will inform the creation of new enforceable cybersecurity standards,” department spokesperson Jeff Nesbit said in a statement.

“The recent cyberattack at Ascension only underscores the need for everyone in the health care ecosystem to do their part to secure their systems and protect patients,” Nesbit said.

Meanwhile, lobbyists for the hospital industry contend cybersecurity mandates or penalties are misplaced and would curtail hospitals’ resources to fend off attacks.

“Hospitals and health systems are not the primary source of cyber risk exposure facing the health care sector,” the American Hospital Association, the largest lobbying group for U.S. hospitals, said in an April statement prepared for U.S. House lawmakers. Most large data breaches that hit hospitals in 2023 originated with third-party “business associates” or other health entities, including CMS itself, the AHA statement said.

Hospitals consolidating into large multistate health systems face increased risk of data breaches and ransomware attacks, according to one study. Ascension in 2022 was the third-largest hospital chain in the U.S. by number of beds, according to the most recent data from the federal Agency for Healthcare Research and Quality.

And while cybersecurity regulations can quickly become outdated, they can at least make it clear that if health systems fail to implement basic protections there “should be consequences for that,” Jim Bagian, a former director of the National Center for Patient Safety at the Veterans Health Administration, told Michigan Public’s Stateside.

Patients can pay the price when lapses occur. Those in hospital care face a greater likelihood of death during a cyberattack, according to researchers at the University of Minnesota School of Public Health.

Workers concerned about patient safety at Ascension hospitals in Michigan have called for the company to make changes.

“We implore Ascension to recognize the internal problems that continue to plague its hospitals, both publicly and transparently,” said Dina Carlisle, a nurse and the president of the OPEIU Local 40 union, which represents nurses at Ascension Providence Rochester. At least 125 staff members at that Ascension hospital have signed a petition asking administrators to temporarily reduce elective surgeries and nonemergency patient admissions, like under the protocols many hospitals adopted early in the covid-19 pandemic.

Watson, the Kansas ICU nurse, said in late May that nurses had urged management to bring in more nurses to help manage the workflow. “Everything that we say has fallen on deaf ears,” she said.

“It is very hard to be a nurse at Ascension right now,” Watson said in late May. “It is very hard to be a patient at Ascension right now.”

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The question has never been exactly how Ann Picha-Lillard died on Nov. 19, 2022: She succumbed to respiratory failure after an infection put too much strain on her weakened lungs. She was 65.

For Tim Lillard, the question has been why.

Lillard had been in the hospital with his wife every day for a month. Nurses in the intensive care unit had told him they were short-staffed, and were constantly rushing from one patient to the next.

Lillard tried to pitch in where he could: brushing Ann’s shoulder-length blonde hair or flagging down help when her tracheostomy tube gurgled — a sign of possible respiratory distress.

So the day he walked into the ICU and saw staff members huddled in Ann’s room, he knew it was serious. He called the couple’s adult children: “It’s Mom,” he told them. “Come now.”

All he could do then was sit on Ann’s bed and hold her hand, watching as staff members performed chest compressions, desperately trying to save her life.

A minute ticked by. Then another. Lillard’s not sure how long the CPR continued — long enough for the couple’s son to arrive and take a seat on the other side of Ann’s bed, holding her other hand.

Finally, the intensive care doctor called it and the team stopped CPR. Time of death: 12:37 p.m.

Lillard didn’t know what to do in a world without Ann. They had been married almost 25 years. “We were best friends,” he said.

Just days before her death, nurses had told Lillard that Ann could be discharged to a rehabilitation center as soon as the end of the week. Then, suddenly, she was gone. Lillard didn’t understand what had happened.

Lillard said he now believes that overwhelmed, understaffed nurses hadn’t been able to respond in time as Ann’s condition deteriorated. And he has made it his mission to fight for change, joining some nursing unions in a push for mandatory ratios that would limit the number of patients in a nurse’s care. “I without a doubt believe 100% Ann would still be here today if they had staffing levels, mandatory staffing levels, especially in ICU,” Lillard said.

Last year, Oregon became the second state after California to pass hospital-wide nurse ratios that limit the number of patients in a nurse’s care. Michigan, Maine, and Pennsylvania are now weighing similar legislation.

But supporters of mandatory ratios are going up against a powerful hospital industry spending millions of dollars to kill those efforts. And hospitals and health systems say any staffing ratio regulations, however well-intentioned, would only put patients in greater danger.

Putting Patients at Risk

By next year, the United States could have as many as 450,000 fewer nurses than it needs, according to one estimate. The hospital industry blames covid-19 burnout, an aging workforce, a large patient population, and an insufficient pipeline of new nurses entering the field.

But nursing unions say that’s not the full story. There are now 4.7 million registered nurses in the country, more than ever before.

The problem, the unions say, is a hospital industry that’s been intentionally understaffing their units for years in order to cut costs and bolster profits. The unions say there isn’t a shortage of nurses but a shortage of nurses willing to work in those conditions.

The nurse staffing crisis is now affecting patient care. The number of Michigan nurses who say they know of a patient who has died because of understaffing has nearly doubled in recent years, according to a Michigan Nurses Association survey last year.

Just months before Ann Picha-Lillard’s death, nurses and doctors at the health system where she died had asked the Michigan attorney general to investigate staffing cuts they believed were leading to dangerous conditions, including patient deaths, according to The Detroit News.

But Lillard didn’t know any of that when he drove his wife to the hospital in October 2022. She had been feeling short of breath for a few weeks after she and Lillard had mild covid infections. They were both vaccinated, but Ann was immunocompromised. She suffered from rheumatoid arthritis, a condition that had also caused scarring in her lungs.

To be safe, doctors at DMC Huron Valley-Sinai Hospital wanted to keep Ann for observation. After a few days in the facility, she developed pneumonia. Doctors told the couple that Ann needed to be intubated. Ann was terrified but Lillard begged her to listen to the doctors. Tearfully, she agreed.

With Ann on a ventilator in the ICU, it seemed clear to Lillard that nurses were understaffed and overwhelmed. One nurse told him they had been especially short-staffed lately, Lillard said.

“The alarms would go off for the medications, they’d come into the room, shut off the alarm when they get low, run to the medication room, come back, set them down, go to the next room, shut off alarms,” Lillard recalled. “And that was going on all the time.”

Lillard felt bad for the nurses, he said. “But obviously, also for my wife. That’s why I tried doing as much as I could when I was there. I would comb her hair, clean her, just keep an eye on things. But I had no idea what was really going on.”

Finally, Ann’s health seemed to be stabilizing. A nurse told Lillard they’d be able to discharge Ann, possibly by the end of that week.

By Nov. 17, Ann was no longer sedated and she cried when she saw Lillard and her daughter. Still unable to speak, she tried to mouth words to her husband “but we couldn’t understand what she was saying,” Lillard said.

The next day, Lillard went home feeling hopeful, counting down the days until Ann could leave the hospital.

Less than 24 hours later, Ann died.

Lillard couldn’t wrap his head around how things went downhill so fast. Ann’s underlying lung condition, the infection, and her weakened state could have proved fatal in the best of circumstances. But Lillard wanted to understand how Ann had gone from nearly discharged to dying, seemingly overnight.

He turned his dining room table into a makeshift office and started with what he knew. The day Ann died, he remembered her medical team telling him that her heart rate had spiked and she had developed another infection the night before. Lillard said he interviewed two DMC Huron Valley-Sinai nurse administrators, and had his own doctor look through Ann’s charts and test results from the hospital. “Everybody kept telling me: sepsis, sepsis, sepsis,” he said.

Sepsis is when an infection triggers an extreme reaction in the body that can cause rapid organ failure. It’s one of the leading causes of death in U.S. hospitals. Some experts say up to 80% of sepsis deaths are preventable, while others say the percentage is far lower.

Lives can be saved when sepsis is caught and treated fast, which requires careful attention to small changes in vital signs. One study found that for every additional patient a nurse had to care for, the mortality rate from sepsis increased by 12%.

Lillard became convinced that had there been more nurses working in the ICU, someone could have caught what was happening to Ann.

“They just didn’t have the time,” he said.

DMC Huron Valley-Sinai’s director of communications and media relations, Brian Taylor, declined a request for comment about the 2022 staffing complaint to the Michigan attorney general.

Following the Money

When Lillard asked the hospital for copies of Ann’s medical records, DMC Huron Valley-Sinai told him he’d have to request them from its parent company in Texas.

Like so many hospitals in recent years, the Lillards’ local health system had been absorbed by a series of other corporations. In 2011, the Detroit Medical Center health system was bought for $1.5 billion by Vanguard Health Systems, which was backed by the private equity company Blackstone Group.

Two years after that, in 2013, Vanguard itself was acquired by Tenet Healthcare, a for-profit company based in Dallas that, according to its website, operates 480 ambulatory surgery centers and surgical hospitals, 52 hospitals, and approximately 160 additional outpatient centers.

As health care executives face increasing pressure from investors, nursing unions say hospitals have been intentionally understaffing nurses to reduce labor costs and increase revenue. Also, insurance reimbursements incentivize keeping nurse staffing levels low. “Hospitals are not directly reimbursed for nursing services in the same way that a physician bills for their services,” said Karen Lasater, an associate professor of nursing in the Center for Health Outcomes and Policy Research at the University of Pennsylvania. “And because hospitals don’t perceive nursing as a service line, but rather a cost center, they think about nursing as: How can we reduce this to the lowest denominator possible?” she said.

Lasater is a proponent of mandatory nurse ratios. “The nursing shortage is not a pipeline problem, but a leaky bucket problem,” she said. “And the solutions to this crisis need to address the root cause of the issue, which is why nurses are saying they’re leaving employment. And it’s rooted in unsafe staffing. It’s not safe for the patients, but it’s also not safe for nurses.”

A Battle Between Hospitals and Unions

In November, almost one year after Ann’s death, Lillard told a room of lawmakers at the Michigan State Capitol that he believes the Safe Patient Care Act could save lives. The health policy committee in the Michigan House was holding a hearing on the proposed act, which would limit the amount of mandatory overtime a nurse can be forced to work, and require hospitals to make their staffing levels available to the public.

Most significantly, the bills would require hospitals to have mandatory, minimum nurse-to-patient ratios. For example: one nurse for every patient in the ICU; one for every three patients in the emergency room; a nurse for triage; and one nurse for every four postpartum birthing patients and well-baby care.

Efforts to pass mandatory ratio laws failed in Washington and Minnesota last year after facing opposition from the hospital industry. In Minnesota, the Minnesota Nurses Association accused the Mayo Clinic of using “blackmail tactics”: Mayo had told lawmakers it would pull billions of dollars in investment from the state if mandatory ratio legislation passed. Soon afterward, lawmakers removed nurse ratios from the legislation.

While Lillard waited for his turn to speak to Michigan lawmakers about the Safe Patient Care Act in November, members of the Michigan Nurses Association, which says it represents some 13,000 nurses, told lawmakers that its units were dangerously understaffed. They said critical care nurses were sometimes caring for up to 11 patients at a time.

“Last year I coded someone in an ICU for 10 minutes, all alone, because there was no one to help me,” said the nurses association president and registered nurse Jamie Brown, reading from another nurse’s letter.

“I have been left as the only specially trained nurse to take care of eight babies on the unit: eight fragile newborns,” said Carolyn Clemens, a registered nurse from the Grand Blanc area of Michigan.

Nikia Parker said she has left full-time emergency room nursing, a job she believes is her calling. After her friend died in the hospital where she worked, she was left wondering whether understaffing may have contributed to his death.

“If the Safe Patient Care Act passed, and we have ratios, I’m one of those nurses who would return to the bedside full time,” Parker told lawmakers. “And so many of my co-workers who have left would join me.”

But not all nurses agree that mandatory ratios are a good idea. 

While the American Nurses Association supports enforceable ratios as an “essential approach,” that organization’s Michigan chapter does not, saying there may not be enough nurses in the state to satisfy the requirements of the Safe Patient Care Act.

For some lawmakers, the risk of collateral damage seems too high. State Rep. Graham Filler said he worries that mandating ratios could backfire.

“We’re going to severely hamper health care in the state of Michigan. I’m talking closed wards because you can’t meet the ratio in a bill. The inability for a hospital to treat an emergent patient. So it feels kind of to me like a gamble we’re taking,” said Filler, a Republican.

Michigan hospitals are already struggling to fill some 8,400 open positions, according to the Michigan Health & Hospital Association. That association says that complying with the Safe Patient Care Act would require hiring 13,000 nurses.

Every major health system in the state signed a letter opposing mandatory ratios, saying it would force them to close as many as 5,100 beds.

Lillard watched the debate play out in the hearing. “That’s a scare tactic, in my opinion, where the hospitals say we’re going to have to start closing stuff down,” he said.

He doesn’t think legislation on mandatory ratios — which are still awaiting a vote in the Michigan House’s health policy committee — are a “magic bullet” for such a complex, national problem. But he believes they could help.

“The only way these hospitals and the administrations are gonna make any changes, and even start moving towards making it better, is if they’re forced to,” Lillard said.

Seated in the center of the hearing room in Lansing, next to a framed photo of Ann, Lillard’s hands shook as he recounted those final minutes in the ICU.

“Please take action so that no other person or other family endures this loss,” he said. “You can make a difference in saving lives.”

Grief is one thing, Lillard said, but it’s another thing to be haunted by doubts, to worry that your loved one’s care was compromised before they ever walked through the hospital doors. What he wants most, he said, is to prevent any other family from having to wonder, “What if?”

This article is from a partnership that includes Michigan Public, NPR, and KFF Health News.

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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This story can be republished for free (details).

“Patients tell me, ‘Doctor, why are you stopping me from getting the care that I need?’” said Crissman, an OB-GYN who provides abortions as part of her practice and is also an assistant professor at the University of Michigan. “The answer is that Prop 3 made access to abortion care a right in Michigan. But these [other] laws remain on the books.”

Ever since the Supreme Court overturned Roe v. Wade, abortion patients have traveled to Michigan in record numbers for care. Voters passed what’s known as Proposal 3 last November, enshrining abortion rights in the state’s constitution. But it can still be difficult to get abortion care in Michigan, and even patients who have secured appointments are regularly turned away, doctors say.

That’s because of remaining legal restrictions, including an informed consent form that must be printed and signed 24 hours before an appointment begins.

This fall, Democrats in Michigan pledged to change those older state laws. They introduced the Reproductive Health Act, which would repeal the state’s 24-hour mandatory waiting period, get rid of the informed consent form, allow Medicaid to cover abortions for low-income patients, and make it easier for private insurance to cover abortions. The legislation would also lift regulations on abortion clinics that advocates say are unnecessary and burdensome.

The time is ripe, Democrats say. Since the 2022 election, the party controls both chambers of the legislature and the governorship, positioning them to pass what they consider a landmark victory for reproductive health.

But now that legislation is stalled — not because of opposition from the Republican minority, but because of dissension within the Democrats’ ranks. Michigan is one of the few remaining Midwestern states where abortion remains legal, so Democrats’ efforts to make the procedure more accessible in the state will have wide-ranging consequences.

Pre-Visit Paperwork Requires Internet Access, a Printer, and Exact Timing

Crissman has a request for anyone who thinks Michigan’s 24-hour mandatory waiting period and informed consent form laws are reasonable: See if you can figure them out.

“Try to figure out what you’re supposed to print. See if you get it right,” said Crissman, “because every day I see patients who’ve driven five hours for abortion care. And they haven’t gotten it right.”

A pamphlet distributed to patients relies heavily on a Q&A format that appears focused on helping them navigate potential difficulties during a pregnancy. One question reads: “How am I supposed to eat healthy food when it costs so much?” The answer: Try food stamps. Q: “What if my house or apartment is in an unsafe neighborhood?” A: Have a “safety plan in mind” and “lock your doors.”

The pamphlet features pictures of smiling pregnant women cradling their bellies and beaming parents holding sleeping newborns. At a statehouse hearing last month, Sarah Wallett, chief medical operating officer of Planned Parenthood of Michigan, said state law mandates these materials be provided to all patients, regardless of their circumstances. One patient was ending a much-wanted pregnancy because of a fetal “anomaly incompatible with life,” Wallett said. “She asked me with tears in her eyes why I had forced her to look at information that wasn’t relevant to her, that only made this harder for her and her family going through this heartbreak. I could only reply, ‘Because Michigan law requires me to.’”

Once patients have reviewed the required materials, they need to click “finish.” That automatically generates a signature form, with a date and time stamp of the exact moment they clicked “finish.” That time stamp must be at least 24 hours, but no more than two weeks, before their appointment. Otherwise, under Michigan law, the appointment must be canceled.

Patients must then print and bring a copy of that signed, time-stamped page to the appointment.

Cancellations Over Paperwork Can Lead to Increased Risks

Planned Parenthood of Michigan reports turning away at least 150 patients a month because of mistakes with that form: The patient didn’t sign it in the proper time window, or printed the wrong page, or didn’t have a printer.

That delay in care can be medically risky, said OB-GYN Charita Roque, who testified at the hearing for the Reproductive Health Act. Roque explained that a patient had developed peripartum cardiomyopathy, a potentially life-threatening heart problem that can occur during pregnancy.

“Not wanting to risk her life, or leave the young child she already had without a mother, she decided to get an abortion,” said Roque, who is also an assistant professor at Western Michigan University’s medical school. “But by the time she finally got to me, she was 13 weeks pregnant, and the clock was ticking due to her high-risk health status.”

The patient didn’t have a printer, so when she arrived at her appointment, she hadn’t brought a hard copy of the required form. Her appointment was postponed.

“During that time, her cardiac status became even higher risk, and it was evident that she would need a higher level of care in a hospital setting,” Roque said. “This meant that the cost would be much, much higher: over $10,000. And since her insurance was legally prohibited from covering abortion care, she anticipated she would have to incur significant medical debt. In the end, she suffered a five-week delay from the first day I saw her [to] when her procedure was finally completed. The delay was entirely unnecessary.”

A Democrat Breaks With Her Party

Republicans and abortion opponents have called the Reproductive Health Act a political overreach, pointing out that the bills go far beyond Proposal 3’s promise, which was to “#RestoreRoe.”

“The so-called Reproductive Health Act, with its dangerous and unpopular changes, goes far beyond what Michigan voters approved in Proposal 3 of 2022,” Republican state Rep. Ken Borton said in a statement. “While claiming to promote reproductive health, this plan ultimately risks hurting Michigan residents by undermining patients and decriminalizing the worst parts of abortion practices.”

Still, until a few weeks ago, Democrats appeared poised to pass the Reproductive Health Act through their majorities in the House and Senate. Gov. Gretchen Whitmer vowed to sign it.

Then, on Sept. 20, state Rep. Karen Whitsett stunned her party: She cast the lone Democratic “no” vote in the House of Representatives health policy committee. The bills still passed out of committee, but the Democrats’ majority in the House is so slim, they can’t afford to lose a single vote.

Whitsett said that she’s not alone in her concerns, and that other Democrats in the state legislature have privately voiced similar doubts about the legislation.

At first, Whitsett said, she thought her discussions with Democratic leadership were productive, “that we were actually getting somewhere. But it was pushed through. And I was asked to either not come to work, or to pass on my vote. I’m not doing either of those.”

It’s not that Whitsett doesn’t support abortion rights, she said. “I’ve been raped. I’ve gone through the process of trying to make the hard decision. I did the 24-hour pause. I did all these things that everyone else is currently going through.”

And because she’s had an abortion, she said, she is proof the current restrictions aren’t so unreasonable. If the current online forms are confusing, she said, “let’s bring this into 2023: How about you DocuSign? But I still do not think that 24 hours of a pause, to make sure you’re making the right decision, is too much to ask.”

Most of all, Whitsett said, her constituents in Detroit and Dearborn do not want Medicaid — and, therefore, their tax dollars — funding elective abortions. Medicaid is jointly funded by state and federal dollars, and the long-standing federal “Hyde Amendment” prohibits federal funds from paying for abortions except in the case of rape or incest, or to save the life of the patient. But states have the option to use their own funding to cover abortion care for Medicaid recipients.

In Michigan, voters approved a ban in 1988 on state funding for abortion, but the new legislation would overturn that. The change would increase state Medicaid costs by an estimated $2 million-$6 million, according to a Michigan House Fiscal Agency analysis.

“People are saying, ‘I agree to reproductive health. But I never agreed to pay for it,’” Whitsett said. “And I think that’s very fair. … I just do not think that that’s something that should be asked of anyone as a taxpayer.”

As Legislative Clock Ticks, Political Pressures Ramp Up

Whitsett is now the target of a public pressure campaign by advocacy groups such as the American Civil Liberties Union of Michigan and Planned Parenthood of Michigan. A virtual event targeted Detroit voters in Whitsett’s district. Paula Thornton-Greer, president and CEO of Planned Parenthood of Michigan, issued a public statement claiming Whitsett would be “solely responsible for the continued enforcement of dozens of anti-abortion restrictions that disproportionately harm women of color and people who are struggling to make ends meet.”

Crissman, the OB-GYN, said she’s tired of not being able to give her patients the care they seek.

“I wish Rep. Whitsett could sit with me and tell a patient to their face: ‘No, we can’t provide your abortion care today, because you printed the wrong page on this 24-hour consent,’” Crissman said. “Or ‘No, mother of five trying to make ends meet and feed your kids, you can’t use your Medicaid to pay for abortion care.’ Because I don’t want to tell patients that anymore.”

But abortion opponents say they’re not surprised the legislation has stalled.

“These hastily crafted bills present a real danger to women and our broader communities,” said Genevieve Marnon, legislative director of Right to Life of Michigan, in an email. “I have no doubt many people of good conscience are finding cause for hesitation, for a whole host of reasons.”

On Monday, Gov. Whitmer told reporters she still expects “the whole package” of legislation in the Reproductive Health Act to pass.

“Any and every bill of the RHA that hits my desk, I’m going to sign. I’d like to see them come as a package. It’s important, and I think that the voters expect that. It was a result of an overwhelming effort to enshrine these rights into our constitution. But also with an expectation that additional barriers are going to be leveled. So I’m not going to pick and choose. I’m not going to say that I can live with this and not that. I want to see the whole package hit my desk.”

This article is from a partnership that includes Michigan Radio, NPR, and KFF Health News.

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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NEDA shuttered that service in May, saying that, in its place, a chatbot called Tessa, designed by eating disorder experts with funding from NEDA, would be deployed.

When NPR aired a report about this last month, Tessa was up and running online. Since then, both the chatbot’s page and a NEDA article about Tessa have been taken down. When asked why, NEDA said the bot is being “updated,” and the latest “version of the current program [will be] available soon.”

Then NEDA announced on May 30 that it was indefinitely disabling Tessa. Patients, families, doctors, and other experts on eating disorders were stunned. The episode has set off a fresh wave of debate as companies turn to artificial intelligence as a possible solution for a mental health crisis and treatment shortage.

Paid staffers and volunteers for the NEDA help line said that replacing the service with a chatbot could further isolate the thousands of people who use it when they feel they have nowhere else to turn.

“These young kids … don’t feel comfortable coming to their friends or their family or anybody about this,” said Katy Meta, a 20-year-old college student who has volunteered for the help line. “A lot of these individuals come on multiple times because they have no other outlet to talk with anybody. … That’s all they have, is the chat line.”

The decision is part of a larger trend: Many mental health organizations and companies are struggling to provide services and care in response to a sharp escalation in demand, and some are turning to chatbots and AI, even though clinicians are still trying to figure out how to effectively deploy them, and for what conditions.

The help line’s five staffers formally notified their employer they had formed a union in March. Just a few days later, on a March 31 call, NEDA informed them that they would be laid off in June. NPR and KFF Health News obtained audio of the call. “We will, subject to the terms of our legal responsibilities, [be] beginning to wind down the help line as currently operating,” NEDA board chair Geoff Craddock told them, “with a transition to Tessa, the AI-assisted technology, expected around June 1.”

NEDA’s leadership denies the decision had anything to do with the unionization but told NPR and KFF Health News it became necessary because of the covid-19 pandemic, when eating disorders surged and the number of calls, texts, and messages to the help line more than doubled.

The increase in crisis-level calls also raises NEDA’s legal liability, managers explained in an email sent March 31 to current and former volunteers, informing them that the help line was ending and that NEDA would “begin to pivot to the expanded use of AI-assisted technology.”

“What has really changed in the landscape are the federal and state requirements for mandated reporting for mental and physical health issues (self-harm, suicidality, child abuse),” according to the email, which NPR and KFF Health News obtained. “NEDA is now considered a mandated reporter and that hits our risk profile — changing our training and daily work processes and driving up our insurance premiums. We are not a crisis line; we are a referral center and information provider.”

Pandemic Created a ‘Perfect Storm’ for Eating Disorders

When it was time for a volunteer shift on the help line, Meta usually logged in from her dorm room at Dickinson College in Pennsylvania.

Meta recalled a recent conversation on the help line’s messaging platform with a girl who said she was 11. The girl said she had just confessed to her parents that she was struggling with an eating disorder, but the conversation had gone badly.

“The parents said that they ‘didn’t believe in eating disorders’ and [told their daughter], ‘You just need to eat more. You need to stop doing this,’” Meta recalled. “This individual was also suicidal and exhibited traits of self-harm as well. … It was just really heartbreaking to see.”

Eating disorders are common, serious, and sometimes fatal illnesses. An estimated 9% of Americans experience an eating disorder during their lifetimes. Eating disorders also have some of the highest mortality rates among mental illnesses, with an estimated death toll of more than 10,000 Americans each year.

But after covid hit, closing schools and forcing people into prolonged isolation, crisis calls and messages like the one Meta describes became far more frequent on the help line.

In the U.S., the rate of pediatric hospitalizations and ER visits surged. On the NEDA help line, client volume increased by more than 100% compared with pre-pandemic levels.

“Eating disorders thrive in isolation, so covid and shelter-in-place was a tough time for a lot of folks struggling,” explained Abbie Harper, who has worked as a help line associate.

Until a few weeks ago, the help line was run by just five to six paid staffers and two supervisors, and it depended on a rotating roster of 90-165 volunteers at any given time, according to NEDA.

Yet even after lockdowns ended, NEDA’s help line volume remained elevated above pre-pandemic levels, and the cases continued to be clinically severe. Staffers felt overwhelmed, undersupported, and increasingly burned out, and turnover increased, according to multiple interviews.

The help line staff formally notified NEDA that their unionization vote had been certified on March 27. Four days later, they learned their positions were being eliminated.

“Our volunteers are volunteers,” said Lauren Smolar, NEDA’s vice president of mission and education. “They’re not professionals. They don’t have crisis training. And we really can’t accept that kind of responsibility.” Instead, she said, people seeking crisis help should be reaching out to resources like 988, a 24/7 suicide and crisis hotline that connects people with trained counselors.

The surge in volume also meant the help line was unable to respond immediately to 46% of initial contacts, and it could take six to 11 days to respond to messages.

“And that’s frankly unacceptable in 2023, for people to have to wait a week or more to receive the information that they need, the specialized treatment options that they need,” Smolar said.

After learning in the March 31 email that the helpline would be phased out, volunteer Faith Fischetti, 22, tried out the chatbot on her own, asking it some of the more frequent questions she gets from users. But her interactions with Tessa were not reassuring: “[The bot] gave links and resources that were completely unrelated” to her questions, she said.

Fischetti’s biggest worry is that someone coming to the NEDA site for help will leave because they “feel that they’re not understood, and feel that no one is there for them. And that’s the most terrifying thing to me.”

A Chatbot Can Miss Red Flags

Tessa the chatbot was created to help a specific cohort: people with eating disorders who never receive treatment.

Only 20% of people with eating disorders get formal help, according to Ellen Fitzsimmons-Craft, a psychologist and associate professor at Washington University School of Medicine in St. Louis. Her team created Tessa after receiving funding from NEDA in 2018, with the goal of looking for ways technology could help fill the treatment gap.

NEDA said Tessa was supposed to be a “rule-based” chatbot, meaning one that is programmed with a limited set of possible responses. It is not ChatGPT and cannot generate unique answers in response to specific queries. “So she can’t go off the rails, so to speak,” Fitzsimmons-Craft said.

The plan was for Tessa to guide users through an interactive, weeks-long course about body positivity, based on cognitive behavioral therapy tools. Additional content about bingeing, weight concerns, and regular eating was under development but not yet available to users.

There’s evidence the AI approach can help. Fitzsimmons-Craft’s team did a small study that found college students who interacted with Tessa had significantly greater reductions in “weight/shape concerns” than a control group at three- and six-month follow-ups.

But even the best-intentioned technology can carry risks. Fitzsimmons-Craft’s team published a different study looking at ways the chatbot “unexpectedly reinforced harmful behaviors at times.” For example, the chatbot would give users a prompt: “Please take a moment to write about when you felt best about your body?”

Responses included: “When I was underweight and could see my bones.” “I feel best about my body when I ignore it and don’t think about it at all.”

The chatbot seemed to ignore the troubling aspects of such responses — and even to affirm negative thinking — when it would reply: “It is awesome that you can recognize a moment when you felt confident in your skin, let’s keep working on making you feel this good more often.”

Researchers were able to troubleshoot some of those issues. But the chatbot still missed red flags, the study found, such as when it asked: “What is a small healthy eating habit goal you would like to set up before you start your next conversation?”

One user replied, “Don’t eat.”

“Take a moment to pat yourself on the back for doing this hard work, <<USER>>!” the chatbot responded.

Massachusetts Institute of Technology assistant professor Marzyeh Ghassemi has seen issues like this crop up in her own research developing machine learning to improve health.

Large language models and chatbots will inevitably make mistakes, but “sometimes they tend to be wrong more often for certain groups, like women and minorities,” she said.

If people receive bad advice or instructions from a bot, “people sometimes have a difficulty not listening to it,” Ghassemi added. “I think it sets you up for this really negative outcome … especially for a mental health crisis situation, where people may be at a point where they’re not thinking with absolute clarity. It’s very important that the information that you give them is correct and is helpful to them.”

And if the value of the live help line was the ability to connect with a real person who deeply understands eating disorders, Ghassemi said, a chatbot can’t do that.

“If people are experiencing a majority of the positive impact of these interactions because the person on the other side understands fundamentally the experience they’re going through, and what a struggle it’s been, I struggle to understand how a chatbot could be part of that.”

Tessa Goes ‘Off the Rails’

When Sharon Maxwell heard NEDA was promoting Tessa as “a meaningful prevention resource” for those struggling with eating disorders, she wanted to try it out.

Maxwell, based in San Diego, had struggled for years with an eating disorder that began in childhood. She now works as a consultant in the eating disorder field. “Hi, Tessa,” she typed into the online text box. “How do you support folks with eating disorders?”

Tessa rattled off a list of ideas, including resources for “healthy eating habits.” Alarm bells immediately went off in Maxwell’s head. She asked Tessa for details. Before long, the chatbot was giving her tips on losing weight — ones that sounded an awful lot like what she’d been told when she was put on Weight Watchers at age 10.

“The recommendations that Tessa gave me were that I could lose 1 to 2 pounds per week, that I should eat no more than 2,000 calories in a day, that I should have a calorie deficit of 500-1,000 calories per day,” Maxwell said. “All of which might sound benign to the general listener. However, to an individual with an eating disorder, the focus of weight loss really fuels the eating disorder.”

It’s really important that you find what healthy snacks you like the most, so if it’s not a fruit, try something else!

Tessa, the chatbot

NEDA blamed the chatbot’s issues on Cass, the mental health chatbot company that operated Tessa as a free service. Cass had changed Tessa without NEDA’s awareness or approval, said NEDA CEO Liz Thompson, enabling the chatbot to generate new answers beyond what Tessa’s creators had intended.

Cass’ founder and CEO, Michiel Rauws, said the changes to Tessa were made last year as part of a “systems upgrade,” including an “enhanced question-and-answer feature.” That feature uses generative artificial intelligence — meaning it gives the chatbot the ability to use new data and create new responses.

That change was part of NEDA’s contract, Rauws said.

But Thompson disagrees. She told NPR and KFF Health News that “NEDA was never advised of these changes and did not and would not have approved them.”

“The content some testers received relative to diet culture and weight management, [which] can be harmful to those with eating disorders, is against NEDA policy, and would never have been scripted into the chatbot by eating disorders experts,” she said.

Complaints About Tessa Started Last Year

NEDA was aware of issues with the chatbot months before Maxwell’s interactions with Tessa in late May.

In October 2022, NEDA passed along screenshots from Monika Ostroff, executive director of the Multi-Service Eating Disorders Association in Massachusetts. They showed Tessa telling Ostroff to avoid “unhealthy” foods and eat only “healthy” snacks, like fruit.

“It’s really important that you find what healthy snacks you like the most, so if it’s not a fruit, try something else!” Tessa told Ostroff. “So the next time you’re hungry between meals, try to go for that instead of an unhealthy snack like a bag of chips. Think you can do that?”

Ostroff said this was a clear example of the chatbot encouraging “diet culture” mentality. “That meant that they [NEDA] either wrote these scripts themselves, they got the chatbot and didn’t bother to make sure it was safe and didn’t test it, or released it and didn’t test it,” she said.

The healthy-snack language was quickly removed after Ostroff reported it. But Rauws said that language was part of Tessa’s “pre-scripted language, and not related to generative AI.”

Fitzsimmons-Craft said her team didn’t write it, that it “was not something our team designed Tessa to offer and that it was not part of the rule-based program we originally designed.”

Then, earlier this year, “a similar event happened as another example,” Rauws said.

“This time it was around our enhanced question-and-answer feature, which leverages a generative model. When we got notified by NEDA that an answer text it provided fell outside their guidelines,” it was addressed right away, he said.

Rauws said he can’t provide more details about what this event entailed.

“This is another earlier instance, and not the same instance as over the Memorial Day weekend,” he said via email, referring to Maxwell’s interactions with Tessa. “According to our privacy policy, this is related to user data tied to a question posed by a person, so we would have to get approval from that individual first.”

When asked about this event, Thompson said she doesn’t know what instance Rauws is referring to.

Both NEDA and Cass have issued apologies.

Ostroff said that regardless of what went wrong, the impact on someone with an eating disorder is the same. “It doesn’t matter if it’s rule-based or generative, it’s all fat-phobic,” she said. “We have huge populations of people who are harmed by this kind of language every day.”

She also worries about what this might mean for the tens of thousands of people turning to NEDA’s help line each year.

Thompson said NEDA still offers numerous resources for people seeking help, including a screening tool and resource map, and is developing new online and in-person programs.

“We recognize and regret that certain decisions taken by NEDA have disappointed members of the eating disorders community,” she wrote in an emailed statement. “Like all other organizations focused on eating disorders, NEDA’s resources are limited and this requires us to make difficult choices. … We always wish we could do more and we remain dedicated to doing better.”

This article is from a partnership that includes Michigan Radio, NPR, and KFF Health News.

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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Michiels directs pediatric emergency medicine at Corewell Health Helen DeVos Children’s Hospital in Grand Rapids, Michigan. Lips pressed together in a thin line, she surveyed what she calls the “disaster” area.

“People have been out here waiting for a couple hours, which is heartbreaking,” she said.

Typically, the ER at DeVos Children’s sees about 140 kids each day, according to Michiels, but on a recent Tuesday in early December, they saw 253.

“I hate when we have a wait,” sighed Michiels. “But for right now, we can’t do it any other way.”

Like many other children’s hospitals across the nation, the capacity of the staff at DeVos Children’s has been stretched by waves of patients with RSV and, increasingly, the flu.

This surge of sick kids is coming after years of some U.S. hospitals cutting back on pediatric beds — in part because it is typically more profitable to treat adult patients. The remaining pediatric beds are increasingly concentrated in urban areas, leaving families in rural areas to travel longer distances to get care for their children.

When Staci Rodriguez brought her 9-month-old son into the ER in their hometown of Shelby Township, Michigan, she was desperate. Santiago Botello Rodriguez, who has big brown eyes and long eyelashes that everybody gushes over, had been sick for days. First Santi stopped eating, so she took him to urgent care, she said. Then he started sleeping 20 hours a day, so Rodriguez went to the pediatrician. She said she was sent home, after being told Santi was just fighting a virus.

Within hours of leaving the pediatrician though, Santi “was so much worse,” Rodriguez said. “His fever was way too high. I couldn’t get it down.” She took him to the ER, where doctors told her Santi had RSV, and that his oxygen saturation levels were dangerously low.

Rodriguez said staff members at the Shelby hospital told her that they couldn’t give him the care he needed, and that they didn’t have the proper equipment.

Out of 130 acute care hospitals in Michigan, 10 currently have pediatric ICUs, according to the Michigan Health & Hospital Association.

The ER wanted to transfer Santi immediately, but Rodriguez said that first there was an agonizing wait while the medical team deliberated where to send him. A hospital in Muskegon was much closer, but DeVos could offer more intensive care.

“So they sent us to DeVos, and he had to ride in the ambulance,” she said. The trip took an hour. “I thought I was going to be able to hold him.”

But for safety, Santi needed to be strapped to the stretcher. “Luckily, he just kind of stared at me the whole time, and then eventually fell asleep,” she said.

Rodriguez watched the beeping monitors as she recounted their story in the hospital room at DeVos Children’s, which had been partitioned to make room for another sick infant and his family.

Moments before, six staff members had assembled around Santi’s bed, speaking in soft tones as they worked to thread a tiny feeding tube through his nostril. Next, as Santi wailed, they held down his chubby arms to keep him still so they could take an X-ray to confirm the tube had been placed properly.

Afterward, Santi lay comfortably on his mother’s chest, a small oxygen tube taped to his face, his breathing labored, while he struggled against sleep. The baby kept both eyes trained on his dad, Saul Botello.

“I hate seeing him like this,” Botello said, his hands in his sweatshirt pocket, his own eyes glued to his son. Eventually, Santi’s heavy lids closed, and he slipped into a fitful sleep in the hospital crib. His mom rubbed his back, shushing him softly.

“He’ll be fine, just have to support him through [this],” said Dr. Andrea Hadley, chief of pediatric medicine at DeVos.

Hadley gets desperate calls from smaller hospitals or free-standing ERs in rural areas, asking if they can transfer their patients to DeVos Children’s. “I have had many calls come in where they said, ‘We’ve called 15 other places and they’ve all said no.'”

Big children’s hospitals like DeVos regularly get transfer requests. But in recent weeks, the calls are coming from a much larger geographical area, including parts of Illinois. Patients who live in Michigan’s Upper Peninsula typically go to Wisconsin for care, Hadley said, but now, those hospitals are full, too.

In response, DeVos Children’s has doubled up rooms, squeezing two patients (and their families) into rooms meant for one. The hospital is also allowing no more than one parent or guardian to stay overnight.

Even with those changes, Hadley said, the hospital has capacity to care only for the sickest children.

“We’ve had to say, ‘We see you, we’re going to support you, but we can’t bring you here yet,'” she said.

In the past, Hadley said, they’d take all referral requests from other hospitals. Across the health care industry, pandemic-era staffing shortages are adding to the strain. Michigan has lost 1,700 staffed hospital beds since 2020, according to the Michigan Health & Hospital Association. That’s left children’s hospitals scrambling during this RSV and influenza surge.

At the Children’s Hospital of Michigan, there’s enough staff to cover only about 60% of the beds, according to chief medical officer Dr. Rudy Valentini. With 40% of beds unavailable, children who need to be admitted must wait in the ER until a bed opens up.

“So we have ICU patients in our emergency department that can’t get up to our ICU,” Valentini said on Dec. 6.

The sheer number of pediatric patients, the bed closures, and the staffing shortages have created a perfect storm for children’s hospitals, leaving them with difficult decisions.

“There’s also a moral distress associated with the thought of having to turn patients away,” Hadley said.

“And how do we balance that distress that comes with knowing, potentially — if we as a system don’t stretch a little more — that there might be patients that are turned away?”

But stretching personnel already “on the brink of burnout” comes with its own risks, said Jamie West, a nurse manager at DeVos. On her floor, there are enough nurses to safely care for 18 patients. But recently, West said they’ve had to stretch the same number of nurses to care for up to 33 seriously ill patients. They don’t have enough electronic monitors for every patient either, Hadley added.

“These kids are just so much sicker [than we typically see during RSV season],” West said. “And when you think about nurses that are already in very large patient assignments, nurses are very worried that their child’s going to go downhill very quickly, that they’re going to maybe miss something because they’re spread so thin.”

At DeVos Children’s, Michiels is a constant blur of motion. One moment, the emergency medicine physician was doing a sepsis work-up for a 12-year-old boy whose fever wouldn’t break. The next moment, her pager went off and she strode down a long linoleum hall to the room designated as the “resuscitation room.” Staffers try to keep that one room open, Michiels said, for “the next blue baby” who’s rushed in.

In a room at the end of the hall, Caitlyn Houston hovered over her 7-week-old daughter, Parker, as nurses tied a small band around the baby’s flailing arm. Parker’s reddened face was bunched up in distress, her cries filling the small room. We’re going to admit her, Michiels told Houston — probably to the pediatric intensive care unit.

Still, Houston couldn’t help but ask: “But you’re not going to send us home, right?”

No, Michiels reassured her softly. The two could stay. Houston said they’d spent the past several sleepless nights in and out of the ER.

“There’s so many kids in here that they have to take the ones that are really bad,” Houston said. “And even two nights ago in the middle of the night, the ER was packed. So we were there for two hours, waiting.”

Being told your infant may need lifesaving medical intervention is never good news, but for parents like Houston, being admitted to the hospital brings relief. Their child would at last get a bed.

This article is from a partnership that includes NPR, Michigan Radio, and KHN.

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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All three women sought abortion care at Northland Family Planning Center in Sterling Heights, a city in the metro Detroit area. And all told their stories to reporter Kate Wells as she embedded in the clinic for nine days in August and September. Wells’ story, produced in partnership with KHN, aired on NPR’s “Morning Edition” on Nov. 3. (The story includes audio of one woman’s abortion procedure that some listeners may find disturbing.)

Northland was started in 1976 by Renee Chelian. She had undergone an illegal abortion at age 16, back in 1966, seven years before Roe v. Wade. In recent months, patients have been traveling to Northland’s three locations from Wisconsin, Indiana, Oklahoma, even as far as Florida and Texas.

But abortion rights in Michigan are far from certain. So far, courts have blocked enforcement of a 1931 law that bans the procedure with no exceptions for rape or incest. But the judicial wrangling has been confusing. On Aug. 1, for example, rapid-fire court rulings meant that abortion in Michigan was legal at breakfast, illegal at lunchtime, and legal once again by dinner.

Michigan voters decide Nov. 8 whether abortion stays legal in the state. What’s known as Proposal 3 would explicitly enshrine in the Michigan Constitution the right to abortion, as well as other reproductive rights.

This story is part of a partnership that includes Michigan Radio, NPR, and KHN.

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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This story can be republished for free (details).

“And while I was on the subway, my mom’s friend said, ‘Something is wrong with your mom,’” Revere said. “‘We don’t know what’s going on, but your mom got lost driving home. What should have been a 15-minute drive ended up taking two hours.’”

Revere flew to L.A. At her mom’s home in Inglewood, she found foreclosure notices, untreated termite damage on the porch, and expired food in the kitchen. Her mother, Lynn Hindmon, was a devout evangelical who worked for her church. A slim, regal self-declared “health nut,” Hindmon was now forgetting to pay bills and couldn’t remember whom she was talking to on the phone.

Revere did not know it then, but that tough time would lead her to find — and help build — a community of caregivers who support one another on social media. TikTok has been an especially helpful platform. Content with the hashtag “dementia” has racked up more than 4 billion views on TikTok, as younger generations, already accustomed to sharing their lives online, now find themselves caring for aging loved ones — often with little preparation and no idea how to do it. Over the past few years, Revere’s account, @MomofMyMom, has become wildly popular, with more than 650,000 followers. Ardent fans have told her they feel like they personally know her and her mom.

It would take nearly a year to get the diagnosis that confirmed what Revere already suspected: Her mother — still in her 50s — had Alzheimer’s disease. Barely 10 years since Revere left home, she found herself moving back in to become a full-time caregiver for her mom and her grandmother, diagnosed with Alzheimer’s years earlier.

“That first year and a half, I was just filled with fear: What if I lose the house?” Revere said.

Because of the stress, she said, “I went through bouts of migraines. My hair, right in the middle, fell out completely.”

“I had to figure out how to get control of all the banking, figure out the passwords, make sure the bills are paid, make sure everything’s taken care of.”

In 2017, her grandmother died. Revere’s grief and isolation felt overpowering. Her friends in their 20s either couldn’t relate or thought she was “wallowing in pity,” Revere said.

Trying to make them understand what her daily life was like now seemed impossible. “I just wanted to find people I didn’t have to explain everything to,” she said.

Revere tried a support group for caregivers, an hour’s drive away. But the other attendees were decades older and had more financial resources. “[They] would say, ‘And now I have to take equity out of our house,’ or ‘I’m thinking of reaching into our 401(k).’ And then I would tell my story, and people would be looking at me like … a charity case, or like my problem is unsolvable. … I just felt worse.”

These days Revere no longer feels so alone. She’s a celebrity of sorts on TikTok, at least among the hundreds of thousands of people who post about the difficulties of caring for a loved one with dementia.

Daughters Are Often Dementia Caregivers

Alzheimer’s is the most common form of dementia. Others include vascular, Lewy body, frontotemporal, and mixed dementia, says the Centers for Disease Control and Prevention. Nearly all forms worsen over time, and there is no cure, although there are some treatments.

The task of caring for people with dementia usually falls on family members. Every year, an estimated 16 million Americans provide more than 17 billion hours of unpaid care for relatives or friends suffering from Alzheimer’s disease or other dementias, according to the CDC. About 60% of these caregivers are women.

“Unfortunately, there is not a very strong system of paid support for people with dementia,” said Elena Portacolone, an associate professor who studies aging and cognitive impairment at UCSF’s Institute for Health & Aging. “And so the most common way of supporting persons with dementia is the daughter.”

Like Revere, many of the women who become caregivers end up quitting their jobs. They often find themselves financially vulnerable and “extremely isolated,” said Portacolone.

Another expert, Teepa Snow, said too many caregivers are struggling. Snow, an occupational therapist in North Carolina, runs a company that trains caregivers of people with dementia. Her own how-to videos about practical, compassionate caregiving rack up millions of views. “TikTok is where people are expressing an unmet need,” she said.

Because there’s no cure for dementia, the medical community often treats it the way previous generations of practitioners treated cancer — like “a big black box,” Snow said. Decades ago, when people got cancer, “we didn’t say anything; we didn’t talk about it. We said, ‘Oh, gosh, that’s horrible.’ And people were like, ‘How long have they got?’”

What family members need from the medical system, Snow said, is more understanding of symptoms and how to handle them, more help setting up long-term support systems, and knowledge about how patients can be helped by changes to their dietary, sleep, and exercise habits.

All too often, however, caregivers are left to muddle through the complex tasks of keeping a patient safe. “That’s pretty lonely,” Snow said.

The covid pandemic disrupted or closed down much in-person support for caregivers, including the adult day care center Revere’s mom had been attending five days a week. Desperate to find social connection, Revere did what so many others did as the pandemic stretched on: She got on TikTok. The short video format has attracted caregivers, who find they can document and share the vivid moments of their worlds at home in ways that would be less visceral on text- or photo-centric platforms.

You can watch a woman’s “day in the life” video of caring for her husband with early-onset Alzheimer’s or one of Revere’s @MomofMyMom posts from 2020, which walks viewers through their bath routine.

“It’s bath day,” Revere says at the start of the post, while still lying in bed. “I try my best not to make this an emotionally draining experience,” she sighs. “So let’s begin.”

Bathing someone with dementia can be difficult, even dangerous. They can get disoriented, or feel threatened when someone takes off their clothes or maneuvers them into a wet tub. They may slip and fall, or try to fight their caregiver. Revere has created a soothing, predictable routine for her mother. At the time of this video, Hindmon is 63, and it’s about five years after her Alzheimer’s diagnosis. She’s not speaking much. Lynn Hindmon is tall, with great cheekbones. This day she’s wearing neon-blue leggings and a purple beanie.

Revere starts off by promising her mom a present — which she’ll get after the bath.

Revere walks her audience through the process, sharing what works for them. She turns on some soul music, plugs in the space heater, puts the dog outside, and lays out all her mom’s clothes. “Lure her into my cave,” she says, as her mom enters the bathroom.

The video then cuts to after the bath is over: Mother and daughter are celebrating with a bathroom dance party.

The video got more than 20,000 views. Hundreds of people left comments, saying how they can relate. One comment read: “My mother-in-law passed a year ago this week. This was the most frustrating part of caring for her. Devoted a whole day to getting this done.” Another commenter told Revere, “God Bless you! I know it’s hard. I see you and send so much love your way.”

Revere posted a follow-up right away:

“How many of us are on here?” she said into the camera. “I’ve been, like, looking for people my age that I can relate to, who have the same experience.”

Revere’s following soared from just a couple of thousand followers to more than 650,000. Many people used the comments to talk about their own caregiving struggles. They wanted to see the little victories, like Revere’s gentle, joyful tricks for getting through bath time. They also listen to Revere’s candid confessions.

“Y’all, I have never been so emotionally drained in my life,” she shared in one video. “Caregiving eats your soul. It kills your spirit. It’s constant mourning for years. … And it’s beautiful.”

Content Creators Weigh Ethics of Going Public

The intimate, unvarnished depictions of dementia on TikTok have raised ethical issues surrounding privacy, dignity, and consent. There are videos on the internet of adults who haven’t consented to their most vulnerable moments being shared with millions of strangers.

In one TikTok, a woman chronicles her grandmother’s aggression, filming as the elderly woman chases her through the house, fists swinging wildly. Other content creators film the verbal abuse that caregivers can experience.

Beth Kallmyer, vice president for care and support for the Alzheimer’s Association, doesn’t think the people posting these videos intend to be exploitative. “You could tell that the caregivers just felt isolated and frustrated and at their wits’ end, with no resources,” she said.

“If I were talking to a family member … considering doing this,” Kallmyer said, “those are the questions I would pose to them: Would they [the person with dementia] be comfortable with this? Is there a way for you to film something that gets the idea across but maintains their dignity?

“Should we have a video of somebody that isn’t fully clothed? Or maybe [before Alzheimer’s] they only went outside when they were dressed to the nines or really put together, and you’ve got them in pajamas or sweatpants or whatever, and they don’t have makeup on. I’m not sure that’s the best way to go about using TikTok.”

Revere has a video that, in retrospect, she now feels ambivalent about posting. It’s the most-watched video on her channel, with 27 million views. In it, her mother is walking around the living room with an open bottle of mouthwash. She somehow got past the locks on the bathroom cabinets.

Lynn Hindmon thinks the mouthwash is a drink, like juice or milk. She looks frustrated and dazed as Revere tries to explain why she can’t drink mouthwash.

With some negotiation, Revere gets her mom to hand it over in exchange for an ice pop.

Some comments on that post call her mom an alcoholic, or say she looked scary. The experience made Revere feel protective — like she needed to be more careful, as she didn’t want to post anything that might put her mom in a bad light. Still, after much consideration, she decided to keep the mouthwash video up. She said it’s a good example of “redirecting” away from a risk — something other caregivers would understand.

On March 9, Jacquelyn Revere posted another video on TikTok, letting her followers know her mother had died. She was 65.

On TikTok, the messages of surprise and condolence poured in.

Revere, an only child, had always assumed that when her mom died she’d mourn her alone. Instead, people were checking in on her, sending her gifts, sharing memories of their favorite videos of Hindmon.

“It’s been the least lonely I’ve ever been throughout this experience, actually,” she said.

Revere has continued to post on @MomofMyMom, talking about what it feels like to miss her mom, and to mourn the life she didn’t live while she was caring for her.

Now she has time to go on dates, get a pedicure, or drive by the ocean.

After six years of caring for her mom, starting when she was just 29, Revere is now trying to figure out who she is now — and what she wants. She knows she wants to stay connected with dementia caregivers.

“I just want them to know that they’re being thought about,” Revere says. “Because that’s what I needed most. Just to know that life isn’t passing me by, and I’m not seen.

“I just want to make sure that they feel seen.”

This story is part of a partnership that includes Michigan Radio, NPR, and KHN.

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.

USE OUR CONTENT

This story can be republished for free (details).