by Megan Rose

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Returning to his home state of Utah, where more babies are born with cleft lip and palate than is typical, Dr. Devan Griner made plans to open his own practice, joining the small cohort of plastic surgeons nationwide who treat the condition.

As he recruited doctors to fill out a team in 2017, Griner had lunch with an orthodontist who’d long worked in the state. He quizzed Griner on his credentials and then turned to bone grafting, a common procedure for cleft patients, who are often missing a piece of their upper jaw. Sitting back, the doctor looked hard at Griner and lobbed a test question: At what age would Griner do bone grafts on patients?

It was a surprising question. There is broad consensus nationwide to time bone grafts to when a patient is getting certain adult teeth, and so Griner, a bit taken aback, replied that of course he does it then. That’s when Griner said the orthodontist relaxed, leaned in over their Neapolitan pizza and declared, “We have a bone grafting problem here in Utah.”

Almost immediately Griner encountered it for himself. Patients began turning up who’d had treatment that departed from the standard of care in ways Griner found alarming. In many cases, he felt they’d had, or been advised to undergo, grueling, and possibly unnecessary, facial surgeries earlier than his profession advised. And they were all treated at Primary Children’s Hospital in Salt Lake City.

As more former Primary Children’s patients sought out Griner’s team, the doctors started to question among themselves, and then with other cleft doctors in the state, whether they needed to do something. It’s a rare and risky move to call out a fellow doctor’s work, much less a team at a well-known hospital. Most children born with a cleft in the five-state region around Utah are treated at Primary Children’s, some traveling the farthest distance for care in the nation. It’s the largest pediatric hospital in the area, and for many, it had been the only choice.

A crucial question emerged: Did the hospital’s patients, and their anxious parents, know that the care they were getting at Primary Children’s was different from what cleft surgeons at top hospitals around the country provided?

The question hit at the heart of a common tension in medicine between the sort of innovation that drives life-enhancing advances and the accepted standard of care, which is informed by peer-reviewed medical studies, broad agreement among specialists and insurance company policies. What information are patients, especially children, owed? And how should regulators respond when doctors want to try something new — especially when doctors, and their choices, may be geographically or otherwise isolated from their peers?

Dr. Devan Griner, a plastic surgeon, at the Cleft and Craniofacial Institute of Utah in Provo (Hannah Yoon for ProPublica)

In the case of cleft lip and palate, the future of children’s faces are on the line. The success of some cleft procedures isn’t fully known until a child has finished growing. Although there can be signs along the way, not until cleft patients are almost adults will doctors be able to fully assess if a certain treatment done at 2 years old was ultimately beneficial or harmful.

Griner’s team and other doctors who’d worked in Utah eventually felt they had to take collective action. A group of nine doctors decided to file a formal complaint with the state, saying “this is about protecting children.” Among their allegations: Some doctors on the hospital’s cleft team were performing bone grafts on patients who were too young — around age 2 — and using an off-label, controversial bone growth product that many doctors shun. They were performing intensive jaw surgeries — which require children to wear a large metal device screwed into their heads for months — so early that they risked some children needing to repeat the operation. And the team was performing surgeries some patients didn’t need.

“They just over, overoperate,” said Lisa Morris, one of the cleft doctors on the state complaint.

Cleft specialists at seven large pediatric institutions around the country, including Seattle Children’s Hospital and Nationwide Children’s Hospital, told ProPublica that the way doctors performed several procedures sharply departed from their speciality’s most common practices.

Utah’s Division of Professional Licensing is investigating the practices of several doctors on Primary’s cleft team, which is staffed by University of Utah doctors. The state agency originally closed the complaint with little investigation, but after an appeal to the head of Utah’s commerce department, which oversees licensing, the division reopened it in April.

Dr. Dana Johns, director of Primary Children’s cleft team, said the fact that her team’s practices don’t align with those of her colleagues in the field “doesn’t mean that different is wrong.” She said that intervening earlier helps protect children with visible facial differences from a gamut of bullying in their formative teen years.

In interviews, both Primary Children’s and the University of Utah told ProPublica they stand by their protocol and fully inform their patients during appointments about how and why their care differs. What the team does is “clinically defensible and potentially advantageous,” Kathy Wilets, a University of Utah Health spokesperson, wrote in a statement.

But ProPublica’s questions, the hospital said, prompted the hiring of two independent cleft surgeons to formally review the protocol. Bioethicists have also reviewed the hospital’s informed consent procedures, leading administrators to make changes to its cleft consent policies and consider hospitalwide changes.

Dr. Jay Agarwal, the hospital’s chief of plastic surgery, said the cleft team believes the standard methods of treating cleft lip and palate aren’t good enough and is trying to advance care by fixing children’s mouths at younger ages and in ways that could eliminate the need for surgery when they’re older.

“We always have to try to do better,” he said.

But parents of some of Primary Children’s patients say their children were unwitting participants in what the hospital calls innovation and what some other cleft experts deemed a potentially risky deviation from evidence-based treatment. Experts said bone grafts done at such an early age could stunt facial growth, resulting in the upper lip looking pushed back and impairing basic tasks such as talking and chewing.

The final results of the early bone grafting won’t be known for years. Patients treated under the new bone-grafting protocol Primary Children’s started around 2017 won’t start seeing full outcomes until around 2029.

Emily Rogers still feels the burden of remorse six years after her son’s bone graft when he was 21 months old. She, like members of several families ProPublica spoke with, said the former head of the program didn’t tell her that bone grafting at that age was unusual, that the hospital was just starting to try it or that doctors weren’t sure how her son’s face would grow after the procedure.

“It’s sickening to find out later you put your kids in their hands and they lied to you, basically,” she said. “That’s what it feels like: It was a lie.”

Gavin Rogers, 7 sits with his mom, Emily Rogers, at their home in Farmington, Utah. (Hannah Yoon for ProPublica) The Standard of Care

From the time a cleft is spotted on a sonogram during pregnancy, parents begin prepping for a series of surgeries to help their child with a noticeable facial difference. Each step of care throughout childhood builds upon the last, slowly marching the face toward the form it failed to take in the womb. A doctor’s misstep can veer the mouth off course or mean more surgery.

People unfamiliar with clefts, besides perhaps what they’ve seen on Operation Smile fundraising commercials, tend to think of the treatment as a one-and-done surgery to repair a small slit in the lip. And while that can be the case, for a lot of babies born with the condition, it’s much more involved. Often, a wide split starts at the nostril, goes down the lip, runs through the upper jaw and continues back through the roof of the mouth toward the throat. Sometimes there are splits on both sides of the mouth.

Cleft lip and palate together affect about 1 in 1,600 babies in the U.S.; around 2,500 are born with both each year. It is unclear why Utah has a higher rate. In general, the cause of a cleft is not well understood. According to the Centers for Disease Control and Prevention, there is some evidence that genetics can play a role, and some environmental factors, such as smoking during pregnancy or taking certain medications, can increase the chances of a cleft forming, which happens in the first trimester.

With cleft lip and palate, often a split starts at the nostril, goes down the lip and through the upper jaw, and continues back through the roof of the mouth toward the throat. Sometimes the split is on both sides of the mouth. (Illustration by Matt Twombly, special to ProPublica)

A cleft can affect a child’s teeth, position of the midface and nose, and ability to hear, breathe, swallow and speak. Many cleft patients need care from a range of specialists from their earliest days until adulthood. Successful cleft treatment repairs those issues, leaving patients’ faces with little evidence of their cleft issues by the time they are grown.

Like most well-known conditions, there is a treatment plan for cleft lip and palate that a majority of doctors follow, known generally as the standard of care. ProPublica spoke with more than a dozen cleft specialists nationwide, and all acknowledged the variability, subjectivity and debate in cleft care. Several pointed out there aren’t large randomized trials that have definitively provided answers, and care continues to evolve. Still, they all laid out the same general timeline of cleft treatment and the reasons for it.

Doctors usually repair the lip and nose around 3 to 6 months, close the palate around 9 to 18 months and then wait to do a bone graft until children are about 5 to 11 years old, though there is debate about when in that age range is best. Jaw surgery, if needed, typically waits until the child is done growing. Most patients will need rhinoplasty and years of orthodontia as well and, in some cases, additional surgeries to help with things like speech.

Richard Kirschner, chief of plastic and reconstructive surgery at Nationwide Children’s in Ohio and the editor of a widely used cleft textbook, said this timeline is based on evidence collected over decades in the care of thousands of patients.

To the doctors at Primary Children’s, the skepticism they’re facing is the plight of pioneers.

“I think it’s easy to keep doing things the same way in the way they’ve always been done,” said Agarwal, who noted that he doesn’t think there is a standard of care in cleft. “And, you know, that’s the answer for a lot of groups that they feel like they don’t want to try new things. And that’s OK. I mean, nothing’s wrong with that.”

Dr. Dana Johns in an exam room at Primary Children’s Hospital (Kim Raff for ProPublica)

Faizi Siddiqi, who helped start the university’s cleft team in 2003, stopped practicing last year and died from cancer in January at age 58. ProPublica was unable to reach him for comment before his death. Duane Yamashiro, an orthodontist who was the medical director of the cleft program for almost 20 years, declined through a spokesperson to comment. So did the most senior plastic surgeon currently on the team, Barbu Gociman. All three are named on the state complaint. Johns and the rest of cleft team doctors are not named on the complaint, and the hospital and the University of Utah declined to comment on it.

“We stand firmly behind our surgical approaches and believe they deliver the best outcomes for our patients, although, through an extensive review of our program we realize there are opportunities to improve the way we communicate with our patients and their families,” Wilets said in a written statement. “The safety and care of our patients is the most important thing to us.”

“We apologize for any distress to any patient family who feels we didn’t meet their expectations and did not feel comfortable addressing their concerns directly with us,” Wilets wrote.

The hospital has around 700 to 800 cleft patients at any given time, and Wilets said its cleft outcomes are in line with or better than other centers’.

In responding to concerns that patients’ families told ProPublica about, Jess Gomez, a hospital spokesperson, wrote, “We have no record of prior complaints from the families you’ve identified regarding their care, and we are saddened to learn of the concerns you’re sharing with us.” He added that the patients were cared for by Siddiqi, so the hospital is unable to respond to specifics about treatment discussions.

Innovating in surgery is a gray area. Unlike drug development, which has strict rules, surgeons are allowed wide leeway to try new things. “It’s a little bit of the Wild West,” said Dr. Jonathan Marron, director of clinical ethics at Harvard, and there isn’t agreement on what the right balance is between supporting innovation and protecting patients.

Doctors have an ethical obligation to make sure their patients are aware of how their protocol differs and what the rationale is for not doing the standard. “Informed consent, in my mind, is an important aspect of this,” he said.

As more and more doctors stick to a standard, the less acceptable a deviation from that standard practice is, Marron said. But figuring out where that line is can be difficult.

Innovating in surgery is not an area that’s robustly regulated. Last year, Utah lawmakers made it easier for doctors to practice outside the standard by loosening the rules that had restricted it, though the law still requires that patients are informed in writing and consent. The hospital and University of Utah didn’t respond to questions about whether patients are informed in writing about any deviations from the standard of care. Since ProPublica began reporting, the hospital has updated its written informed consent form regarding families’ options, Wilets said, and it now “more explicitly” tells patients that there is no standard protocol for cleft patients and different institutions have different protocols.

In other parts of the world, cleft lip and palate care has undergone changes based on government oversight. For example, in the United Kingdom there used to be many cleft centers with wide variations in success. Then the government audited outcomes, looking at factors such as how well patients were able to speak and how well their jaws aligned. Some centers achieved much better results with fewer surgeries. The government consolidated care among fewer centers to improve results and consistency. There isn’t any similar oversight in the United States.

“I think the important thing to understand here is that there’s not a whole lot of regulation in terms of who is looking after clinical outcomes,” Kirschner said. “And so it’s really [left] up to parents to do their research.”

An Outside Doctor

When Griner questioned the parents of the former Primary Children’s patients, he said, none of them understood that the treatment their child had received wasn’t the norm. The parents cycled through shock, anger and grief in his office so often that eventually he could tell by their faces what they’d say next, he said. The remorse stage was the hardest to hear, with parents blaming themselves for not asking more questions.

The parents, dogged by inchoate worries, had come to him seeking a second opinion once Griner and his partners opened their practice, he and some patients said.

Griner, who remembers going door to door to fundraise for Primary Children’s as a child, said he’d always believed that the hospital’s general excellence included the cleft team. He had wanted to work there. But Griner says that after he chose a fellowship position in Texas instead of with the University of Utah, relations soured.

Later, after seeing the unit’s handiwork firsthand in his practice, he took his concerns to the hospital’s administration. During 2018 and 2019, he said, he had three conversations with different levels of leadership, including the hospital’s then-CEO, about the poor cleft outcomes he and others were seeing. Each time, he said, his concerns weren’t taken seriously.

A spokesperson for Primary Children’s said the former CEO and another administrator couldn’t recall any such conversations, and the third, a director of surgical services at the time, said he recalled only casual conversations between colleagues. “If a concern were adequately raised by Dr. Griner, the concern would have been investigated and necessary action would have been taken,” Gomez said in an email.

As Griner’s new cleft team settled in, their worries mounted. Once a month, the cleft team would meet with patients to collectively discuss next steps. After a former Primary Children’s patient would leave one of those meetings for the first time, the doctors said they would look at each other, shaking their heads: “Can you believe that?”

Griner checks the teeth of Robbie McFerson, 4, while his mom, Sarah McFerson, holds him at the Cleft and Craniofacial Institute of Utah in Provo. (Hannah Yoon for ProPublica)

Primary Children’s undertakes two surgeries to repair the palate instead of one, something most doctors in the United States have stopped doing. The hospital is unusual in that it uses a prosthetic device to cover the palate hole, which requires more time under anesthesia when swapped out for a new one. The hospital also often surgically expands the palate of young patients when a retainer-like device would typically be used instead.

To Griner and his team, the timing of two major procedures — bone grafting and jaw surgeries — were worrying enough on their own, but along with other ways Primary Children’s is an outlier, they were concerned that patients were getting aberrant care at many stages.

Finally, in 2022, a group of doctors — many of whom compete with Primary Children’s — raised the issues with the state. Ten doctors’ names appear on the complaint, though one told ProPublica that although he agreed with many of the concerns, he wasn’t aware he’d been included on it.

(One of the plastic surgeons who signed the complaint, Rodney Schmelzer, has a complicated history with Primary Children’s. He lost his privileges there in 2017 and has two ongoing lawsuits against the hospital, one of which also names Yamashiro and Siddiqi. The hospital and the doctors have denied the allegations.)

Utah’s Department of Commerce, which oversees the Division of Professional Licensing, said it could not confirm nor deny an investigation.

The complaint alleges that Primary Children’s doctors “routinely exploit Cleft Patients and their families by … subjecting [them] to excessive numbers of surgeries outside the standard of care” without being honest about the risks, benefits or alternatives, which the doctors say violates medical ethics and Utah law.

Major Jaw Surgeries

Paige Holland started looking for a second opinion when Primary Children’s said her 7-year-old son would next need major jaw surgery to correct the underbite that commonly afflicts cleft patients.

The operation, called a LeFort distraction, sounded medieval to Holland: Doctors would cut part of his upper jaw from his skull and screw a rigid metal device, called a halo, to the outside of his head. Wires would attach his upper jaw to the device, and every day for weeks Holland would turn screws to tighten the wires and slowly pull her son’s jaw bone forward and allow more bone to grow. He’d wear the halo for months.

The LeFort Halo Procedure Initial jaw alignment: Cleft patients often have severe underbites. This can affect how the face looks and can also impact basic functions, such as chewing. Surgical procedure: Doctors make cuts along the upper jaw so it can be repositioned. LeFort device attachment: Doctors screw a rigid metal device, called a halo, to the outside of the head and attach it to the upper jaw. After the surgery, patients tighten the wires daily to pull the jaw forward over the course of a few weeks. New bone grows, lengthening the jaw. The child wears the halo for several months to allow the bone to heal. (Illustrations by Matt Twombly, special to ProPublica)

Jaw surgeries aren’t unusual for cleft patients, but the age Primary Children’s often does them makes the hospital an outlier. Holland’s son would have been as young as 9 at the time of the surgery, according to his Primary Children’s medical records reviewed by ProPublica.

The American Cleft Palate Craniofacial Association guidelines state that “whenever possible, [jaw] surgery should be delayed until physical maturation is essentially completed.’’ Cleft doctors at six leading hospitals said they don’t perform jaw surgeries until children stop growing. For girls, that’s about 14 to 16 years old; for boys, it’s closer to 18.

Until recently, Primary Children’s website told families to expect possible jaw surgery between 9 and 10 years old. But it has since changed the age range to between 9 and 15-plus. Some other cleft centers also perform early jaw surgeries, and Kirschner told ProPublica he thinks that surgeries performed before maturity fall within the standard of care, though he personally waits for patients to be grown.

Primary Children’s data from 2020 showed that the average age of LeFort halo surgery there was 11.4 years old, according to a paper published by the hospital’s cleft team that analyzed nearly 60 cleft patients who had halos over a three-year period. The age of the patients ranged from 8 to 16 years old.

Cleft doctors ProPublica spoke with said they perform jaw surgery before maturity in only a tiny proportion of cases, usually only if medically necessary. Dr. Roberto Flores, head of the program at NYU, estimated the number at no more than 5%.

At Seattle Children’s Hospital, even in those extraordinary cases, the surgery would not happen until 12 to 14 years old, when most of the adult teeth are finished coming in, according to the hospital’s former chief of craniofacial surgery, Richard Hopper.

“I’ve been with the cleft team for 20 years, and I can pretty conclusively say we haven’t done a Lefort … on a patient younger than 12 years old, 11 at the earliest,” Hopper said last year before he took a job with Texas Children’s Hospital.

“The earlier you do a jaw surgery, the more likely you’re going to have to repeat it later,” a cleft team surgeon at a top-rated pediatric hospital said. “Basically you’re committing kids to having an extra operation.”

The best practice, many doctors said, is to do one definitive jaw surgery close to adulthood.

“It’s a brutal enough operation. You wouldn’t want to have to do it twice,” a leader in the field said. Both doctors asked not to be identified out of concern it would jeopardize relationships within the small community of doctors who provide cleft care.

Primary’s Johns said such critiques ignore the psychosocial issues children with cleft deal with. Bullying should be given more weight in treatment plans, she said, and repairing a child’s differences before high school has merit. Most of her surgeries wait till at least age 12, she said, and when she does them on younger patients, it’s for either psychosocial or other pronounced medical problems.

Dr. Trace Lund checks Robbie’s palate and teeth. Children with cleft lip and palate often have extra or missing teeth, or teeth that emerge in the wrong spot. (Hannah Yoon for ProPublica)

Moreover, patients who wait until maturity can sometimes require extensive operations involving both the upper and lower jaws, Johns said. Patients who’ve had the surgery young might require a second jaw surgery, she said, but it would involve only the upper jaw. The trade-off, she said, is worth it.

Rohit Khosla, surgical director of the cleft team at Stanford Medicine Children’s Health who trained Johns during her fellowship, reviewed all of the hospital’s protocols at her request. In general, Khosla told ProPublica that he thought the hospital’s methods were controversial but not problematic. He found several problems with the cleft team’s study designs and conclusions, but overall its “protocols are conscientiously thought out with [a] goal to provide a high level of care,” he said in a summary of his report. The hospital would not share his full written review and asked Khosla to stop speaking with ProPublica once it was completed. Primary Children’s also set up a double-blinded review — neither the hospital nor reviewer knew whom the other was — to further assess its protocols, but the hospital said it would not make the report public when it was completed.

In looking at the hospital’s latest LeFort data, Khosla wrote that in the “last few years” the average age has increased to 14, “which I find more acceptable.”

On a Facebook page for Utah parents of children with cleft, numerous posts over the years speak to the hospital’s push to perform LeForts young. Some talk about how their children endured the surgery before 10 years old — “not going to lie the Halo is tough!” one mother wrote — and needed to repeat a jaw surgery as a teenager.

Holland said she thought there had to be another way to fix her son’s underbite and asked about braces. After Primary Children’s said there wasn’t, she said, she sought a second opinion with Griner, who sent him to an orthodontist instead. Holland’s son was one of at least seven former Primary Children’s patients whom Griner said he diverted from having surgery before maturity. None of them, in Griner’s opinion, had any medical necessity for the operation before maturity or reported bullying or other psychosocial issues. Schmelzer, who also signed the complaint against Primary Children’s, said his medical records showed similar numbers.

Griner recalled one startling case last summer in which Primary Children’s had lined up surgery for a 9-year-old child whose jaw was nearly normal. An independent plastic surgeon who specializes in cleft at a large academic institution reviewed the patient’s CT scan for ProPublica and confirmed Griner’s assessment that there was no need for surgery.

Holland’s son, now 13, has only a minor underbite after orthodontics and likely won’t need jaw surgery at all.

“He’s totally fine,” Holland said. “He was saved from a major surgery.”

Experimenting With Bone Grafts

About seven years ago, spurred by what Johns said was a “hypothesis we had,” Primary Children’s cleft team began experimenting with how surgeons bone grafted the upper jaw.

Without putting in place the protections of a formal research study, Johns and her colleagues decided the invasive surgeries could be done successfully when children were years younger — age 2 — than was standard practice in their field.

The “gold standard” for a bone graft is to use a piece of the child’s own hip. At 2, a patient doesn’t have enough bone to harvest. So over a period of about two years, Primary Children’s tested in its toddler-age patients different combinations of materials that would create a lasting bone graft.

Among the materials was a controversial product called bone morphogenic protein, or BMP, which stimulates bone growth. The BMP is put into the jaw where the child is missing bone and, in theory, spurs the body to naturally make bone, gradually filling the gap.

Some cleft doctors have hailed BMP as a less invasive way to treat patients since it first came to market in 2002 — but Primary Children’s believed it could be used in children years younger than their peers at other centers.

The parents of several patients told ProPublica they were never informed that their child was undergoing an untested procedure. In some cases the bone graft failed, necessitating a repeat of the painful operation.

In 2017, Gavin Rogers, 21 months old with the wispy blond hair of a baby, had bone graft and hard palate repair. Afterwards, “he was screaming all the time. He wasn’t sleeping, wasn’t eating. I had to squirt milk into his mouth,” his mom, Emily Rogers, recalled.

Gavin at 21 months, after his bone graft at Primary Children’s Hospital in 2017. His parents said they weren’t told that a bone graft at that age was unusual. (Courtesy of Emily Rogers)

Primary’s decision to use BMP in toddlers was a risky bet. In 2015, the U.S. Food and Drug Administration issued a safety warning about using BMP in children. The warning said that BMP hadn’t been approved for children “because their bones may still be growing and using this product may cause serious injuries.” The FDA action followed revelations of injuries, including alleged deaths, related to the use of BMP in spine patients. BMP’s maker was subjected to a congressional investigation and paid hundreds of millions to settle civil suits.

The FDA recommended against routine use in children and told doctors to be sure to inform parents about the risks.

Doctors are allowed to use products like BMP for so-called off-label purposes and commonly do, often to the benefit of their patients. In 2017, Dr. Jeff Hammoudeh, a plastic surgeon at Children’s Hospital Los Angeles, published one of the largest studies of BMP in cleft patients and found that over nine years of use its safety and success was comparable to using bone from the child’s hip. But the average age of his patients was 11 and his youngest patient was 6. He said he wouldn’t use BMP in patients any younger than that because of concerns, shared by other experts, about the long-term growth of a child’s face and questions about the safe amount to use in a child of that size.

Johns, of Primary Children’s, said that Hammoudeh’s study was one of the reasons her team felt confident in using BMP.

Hammoudeh said doctors need to be up-front about what they are doing and build in clear guardrails. When he experimented with performing lip repairs in newborns, he did so through a supervised research study. Parents, he said, were given the choice to have the traditional protocol, just as they were for bone grafting with BMP.

Some doctors may eschew the word “experiment” when trying out a new protocol, he said, but that’s what it is — even if they deem it “innovation.”

“You can soften the terminology any which way, but if you don’t know what the results will be, you don’t know what the results will be,” he said.

Johns told ProPublica she doesn’t offer parents the choice to have a bone graft at the traditional age because she’s confident that her way is better. Giving them the option, she said, “means that we’re telling them, ‘OK, we’re going to allow you to have subpar results.’”

Johns said that since as early as 2018, the parents of patients have been told that the new protocol is superior to traditional care, a claim she said is supported by observational results from the team’s first patients.

The Rogerses and other parents who spoke with ProPublica said Siddiqi, the lead plastic surgeon at the time, led them to believe that grafting at toddler age was the standard of care.

“One hundred percent,” said one mom, whose daughter was not yet 18 months at the time of the procedure and had to repeat the surgery later. She said the conversation with a reporter “was the first I’m hearing this isn’t typical.”

After his surgery, Gavin happened to see a new doctor outside the hospital. Rogers said she stopped breathing when she learned that around the country, many doctors time bone grafts to when certain adult teeth come in. Gavin still didn’t have all his baby teeth.

And the bone graft didn’t work. Gavin faces a second bone graft surgery this summer at 8 years old — in the age range when most other doctors would have done it the first time.

Gavin lies on his bed at his home in Farmington, Utah. He’ll need a second bone graft surgery this summer. (Hannah Yoon for ProPublica)

Four years after Primary Children’s started the protocol, the hospital did its first formal study — a review of 14 patients’ medical records. From around 2017 to mid-2019 — when Johns was telling patients the protocol was a success — the cleft team used different surgical techniques and a combination of bone products, including the BMP, that proved unreliable, and some patients needed additional grafts, according to the study and a university spokesperson.

A hospital spokesperson said its bone grafting procedures have advanced since patients such as Gavin had the operation. Khosla, the Stanford doctor who reviewed the protocol, reported in his summary that newer hospital data demonstrates good early results.

Johns and Agarwal said their new protocol was a slow evolution and didn’t need to be overseen by independent reviewers. Performing a bone graft sooner, they said, would solve a common problem in cleft patients in which the arch of their mouth is narrow and collapses inward as they grow. Moving to age 2 was a minor progression, Johns said, noting that the mouths of a 5-year-old, the youngest age most doctors would do a bone graft, and a 2-year-old are similar.

“There was nothing that felt outlandish about it,” Johns said.

Johns concedes they don’t know yet how their patients’ faces will grow over time. So far, she said the outcomes are trending in the right direction, “but we recognize that we’ve got eight more years to continue to see if it holds up.”

She’s clear about this uncertainty with her patients, she said, as well as how Primary’s protocols diverge from the standard. She said if parents are uncomfortable, she encourages them to seek a second opinion. (One mother said Johns’ colleague told her that he would no longer treat her son after she sought a second opinion.)

Primary Children’s Hospital in Salt Lake City (Kim Raff for ProPublica)

Jessica Bernstein, whose 6-year-old son is a cleft patient at Primary Children’s and whom the hospital connected with ProPublica, said she had the utmost confidence in the care received and felt Johns and the other doctors carefully thought out decisions. She said they told her that the hospital’s timeline for care was based on the latest, best research. Although she said she wasn’t informed that aspects of the hospital’s protocol differ from the standard or that BMP was off-label for children, she felt her son was being treated in the right place.

Other cleft doctors said previous attempts to fix the upper jaw line between birth and 2 years old — known as “primary bone grafting” — were abandoned because of poor outcomes.

Dr. Ron Hathaway recalls when he was at the University of Indiana and participated in a study that compared outcomes at five cleft centers. One fared significantly worse. The upper jaws of many of its patients didn’t grow as expected, leaving them with underbites. Hathaway was stunned to learn it was his program.

Indiana, it turned out, was the only one that grafted before age 2. The others waited until patients were school age. Hathaway had been involved in such grafting at Indiana since 1992, and now he faced the humbling data that his patients were three times more likely than the study’s best center to need invasive jaw surgery because of it.

“I had to go home and have a serious conversation with my surgeons,” he said.

Indiana eliminated primary bone grafting, and when the study was repeated 10 years later, Hathaway said, outcomes had drastically improved. While this type of research can’t definitively prove causation, he said, “a thinking person would say primary bone grafting causes [poorer growth] of the upper jaw.”

The original study was published in 2011, joining a body of research over decades that showed such grafting was “significantly detrimental,” Kirschner, of Nationwide, said.

Nevertheless, in 2016 the cleft team at Primary Children’s began questioning whether operating earlier would be better, said Agarwal, the chief of plastics. He and Johns said what they do is different — in terms of a slightly older age and specifics of the procedure — from the primary bone grafting of the past. Khosla, of Stanford, wrote in his review summary that the protocol challenges conventional wisdom, but “their rationale and the theoretic benefits are sensible.”

For Cindy Anderson, whose daughter’s bone graft echoed Gavin’s in both timing and failure, it wasn’t just that her daughter had to repeat a surgery. Had they been informed of the innovative nature, Anderson said they might have agreed because of their faith in the doctors. But not to be given a chance to consent made them feel duped.

She said they’re left wondering about Primary Children’s: “What the heck are they doing?”

Mariam Elba contributed research.

This post was originally published on Articles and Investigations – ProPublica.

by Anna Maria Barry-Jester

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Karmin Strohfus, the lead nurse at a South Dakota jail, punched numbers into a phone like lives depended on it. She had in her care a pregnant woman with syphilis, a highly contagious, potentially fatal infection that can pass into the womb. A treatment could cure the woman and protect her fetus, but she couldn’t find it in stock at any pharmacy she called — not in Hughes County, not even anywhere within an hour’s drive.

Most people held at the jail where Strohfus works are released within a few days. “What happens if she gets out before I’m able to treat her?” she worried. Exasperated, Strohfus reached out to the state health department, which came through with one dose. The treatment required three. Officials told Strohfus to contact the federal Centers for Disease Control and Prevention for help, she said. The risks of harm to a developing baby from syphilis are so high that experts urge not to delay treatment, even by a day.

Nearly three weeks passed from when Strohfus started calling pharmacies to when she had the full treatment in hand, she said, and it barely arrived in time. The woman was released just days after she got her last shot.

Last June, Pfizer, the lone U.S. manufacturer of the injections, notified the Food and Drug Administration of an “impending stock out” that it anticipated would last a year. The company blamed “an increase in syphilis infection rates as well as competitive shortages.”

Across the country, physicians, clinic staff and public health experts say that the shortage is preventing them from reining in a surge of syphilis and that the federal government is downplaying the crisis. State and local public health authorities, which by law are responsible for controlling the spread of infectious diseases, report delays getting medicine to pregnant people with syphilis. This emergency was predictable: There have been shortages of this drug in eight of the last 20 years.

Yet federal health authorities have not prevented the drug shortages in the past and aren’t doing much to prevent them in the future.

Syphilis, which is typically spread during sex, can be devastating if it goes untreated in pregnancy: About 40% of babies born to women with untreated syphilis can be stillborn or die as newborns, according to the CDC. Infants that survive can suffer from deformed bones, excruciating pain or brain damage, and some struggle to hear, see or breathe. Since this is entirely preventable, a baby born with syphilis is a shameful sign of a failing public health system.

In 2022, the most recent year for which the CDC has data available, more than 3,700 babies were infected with syphilis, including nearly 300 who were stillborn or died as infants. More than 50% of these cases occurred because, even though the pregnant parent was diagnosed with syphilis, they were never properly treated.

That year, there were 200,000 cases identified in the U.S., a 79% increase from five years before. Infection rates among pregnant people and babies increased by more than 250% in that time; South Dakota, where Strohfus works, had the highest rates — including a more than 400% increase among pregnant women. Statewide, the rate of babies born with the disease, a condition known as congenital syphilis, jumped more than 40-fold in just five years.

And that was before the current shortage of shots.

In Mississippi, the state with the second highest rate of syphilis in pregnant women, Dr. Caroline Weinberg started having trouble this summer finding treatments for her clinic’s patients, most of whom are uninsured, live in poverty or lack transportation. She began spending hours each month scouring medicine suppliers’ websites for available doses of the shots, a form of penicillin sold under the brand name Bicillin L-A.

“The way people do it for Taylor Swift, that’s how I’ve been with the Bicillin shortage,” Weinberg said. “Desperately checking the websites to see what I can snag.”

The shortage is driving up infection rates even further.

The way people do it for Taylor Swift, that’s how I’ve been with the Bicillin shortage. Desperately checking the websites to see what I can snag.

—Dr. Caroline Weinberg

In a November survey by the National Coalition of STD Directors, 68% of health departments that responded said the drug shortage will cause syphilis rates in their area to increase, further crushing the nation’s most disadvantaged populations.

“This is the most basic medicine,” said Meghan O’Connell, chief public health officer for the Great Plains Tribal Leaders’ Health Board, which represents 18 tribal communities in South Dakota and three other states. “We allow ourselves to continue to not have enough, and it impacts so many people.”

ProPublica examined what the federal government has done to manage the crisis and the ways in which experts say it has fallen short.

The government could pressure Pfizer to be more transparent.

Twenty years ago, there were at least three manufacturers of the syphilis shot. Then Pfizer, one of the manufacturers, purchased the other two companies and became the lone U.S. supplier.

Pfizer’s supply has fallen short since then. In 2016, the company announced a shortage due to a manufacturing issue; it lasted two years. Even during times when Pfizer had not notified the FDA of an official shortage, clinics across the country told ProPublica, the shots were often hard to get.

Several health officials said they would like to see the government use its power as the largest purchaser of the drug to put pressure on Pfizer to produce adequate supplies and to be more transparent about how much of the drug they have on hand, when it will be widely available and how stable the supply will be going forward.

In response to questions, Pfizer said there are two reasons its supply is falling short. One, the company said, was a surge in use of the pediatric form of the drug after a shortage of a different antibiotic last winter. Pfizer also blamed a 70% increase in demand for the adult shots since last February, which it described as unexpected.

Public health experts say the increase in cases and subsequent rise in demand was easy to see coming. Officials have been raising the alarm about skyrocketing syphilis cases for years. “If Pfizer was truly caught completely off guard, it raises significant questions about the competency of the company to forecast obvious infectious disease trends,” a coalition of organizations wrote to the White House Drug Shortage Task Force in September.

Pfizer said it is consistently communicating with the CDC and FDA about its supply and that it has been transparent with public health groups and policymakers.

The FDA has a group dedicated to addressing drug shortages. But Valerie Jensen, associate director of that staff, said the FDA can’t force manufacturers to make more of a drug. “It is up to manufacturers to decide how to respond to that increased demand.” she said. “What we’re here to do is help with those plans.”

Pfizer said it had a target of increasing production by about 20% in 2023 but faced delays toward the end of the year. The company did not explain the reason for those delays.

The company said it has invested $38 million in the last five years in the Michigan facility where it makes the shots and that it is increasing production capacity. It also said it is adding evening shifts at the facility and actively recruiting and training new workers. Pfizer said it also reduced manufacturing time from 110 to 50 days. By the end of June, the company expects the supply to recover, which it described as having eight weeks of inventory based on its forecast demands with no disruptions in sight.

A medical assistant at a California clinic in 2021 holds a syringe used to treat syphilis. Since last June, a shortage has made these shots hard to find. (Talia Herman, special to ProPublica) The government could manufacture the drug itself.

Having only one supplier for a drug, especially one of public health importance, makes the country vulnerable to shortages. With just one manufacturer, any disruption — contamination at a plant, a shortage of raw materials, a severe weather event or a flawed prediction of demand — can put lives at risk. What’s ultimately needed, public health experts say, is another manufacturer.

Congressional Democrats recently introduced a bill that would authorize the U.S. Department of Health and Human Services to manufacture generic drugs in exactly this scenario, when there are few manufacturers and regular shortages. Called the Affordable Drug Manufacturing Act, it would also establish an office of drug manufacturing.

This same bill was introduced in 2018, but it didn’t have bipartisan support and was never taken up for a vote. Sen. Elizabeth Warren, the Massachusetts Democrat who introduced the bill in the Senate, said she’s hopeful this time will be different. Lawmakers from both parties understand the risks created by drug shortages, and COVID-19 helped everyone understand the role the government can play to boost manufacturing.

Still, it’s unlikely to be passed with the current gridlock in Congress.

The government could reserve syphilis drugs for infected patients.

Responding to the shortage of shots to treat the disease, the CDC in July asked health care providers nationwide to preserve the scarce remaining doses for people who are pregnant. The shots are considered the gold standard treatment for anyone with syphilis, faster and with fewer side effects than an alternative pill regimen. And for people who are pregnant, the pills are not an option; the shots are the only safe treatment.

Despite that call, the military is giving shots to new recruits who don’t have syphilis, to prevent outbreaks of severe bacterial respiratory infections. The Army has long administered this treatment at boot camps held at Fort Leonard Wood, Fort Moore and Fort Sill. The Army has been unable to obtain the shots several times in the past few years, according to the U.S. Army Center for Initial Military Training. But the Defense Health Agency’s pharmacy operations center has been working with Pfizer to ensure military sites can get them, a spokesperson for the Defense Health Agency said.

“Until we think about public health the way we think about our military, we’re not going to see a difference,” said Dr. John Vanchiere, chief of pediatric infectious diseases at Louisiana State University Health Shreveport.

Some public health officials, including Alaska’s chief medical officer, Dr. Anne Zink, questioned whether the military should be using scarce shots for prevention.

“We should ask if that’s the best use,” she said.

Using antibiotics to prevent streptococcal outbreaks is a well-established, evidence-based public health practice that’s also used by other branches of the armed services, said Lt. Col. Randy Ready, a public affairs officer with the Army’s Initial Military Training center. “The Army continues to work with the CDC and the entire medical community in regards to public health while also taking into account the unique missions and training environments our Soldiers face,” including basic training, Ready said in a written statement.

The government isn’t stockpiling syphilis drugs.

In rare instances, the federal government has created stockpiles of drugs considered key to public health. In 2018, confronting shortages of various drugs to treat tuberculosis, the CDC created a small stockpile of them. And the federal Administration for Strategic Preparedness and Response keeps a national stockpile of supplies necessary for public health emergencies, including vaccines, medical supplies and antidotes needed in case of a chemical warfare attack.

In November, the Biden administration announced it was creating a new syphilis task force. When asked why the federal government doesn’t stockpile syphilis treatments, Adm. Rachel Levine, the HHS official who leads the task force, said officials don’t routinely stockpile drugs, because they have expiration dates.

In a written statement, an HHS spokesperson said that Bicillin has a shelf life of two years and that the Strategic National Stockpile “does not deploy products that are commercially available.” In general, the spokesperson wrote, stockpiles are most effective before a national shortage begins and can’t overcome the problems of limited suppliers or fragile supply chains. “There is also a risk that stockpiles can exacerbate shortages, particularly when supply is already low, by removing drugs from circulation that would have otherwise been available,” the spokesperson wrote.

Stephanie Pang, a senior director with the coalition of STD directors, said that given the critical role of this drug and the severe access concerns, she thinks a stockpile is necessary. “I don’t have another solution that actually gets drugs to patients,” Pang said.

The government could declare a federal emergency.

Some public health officials say the federal government needs to treat the syphilis crisis the way it did Ebola or monkeypox.

Declare a federal emergency, said Dr. Michael Dube, an infectious disease specialist for more than 30 years. That would free up money for more public health staff and fund more creative approaches that could lead to a long-term solution to the near-constant shortages, he said. “I’d hate to have to wait for some horrible anecdotes to get out there in order to get the public’s and the policymakers’ minds on it,” said Dube, who oversees medical care for AIDS Healthcare Foundation wellness clinics across the country.

Citing an alarming surge in syphilis cases, the Great Plains Tribes wrote to the HHS secretary last week asking that the agency declare a public health emergency in their areas. In the request, they asked HHS to work globally to find adequate syphilis treatment and send the needed medicine to the Great Plains region.

During the 2014 outbreak of Ebola in West Africa, Congress gave hundreds of millions of dollars to HHS to help develop new rapid tests and vaccines. Facing a global outbreak of monkeypox in 2022, a White House task force deployed more than a million vaccines, regularly briefed the public and sent extra resources to Pride parades and other places where people at risk were gathered.

I’d hate to have to wait for some horrible anecdotes to get out there in order to get the public’s and the policymakers’ minds on it.

—Dr. Michael Dube

Levine, leader of the federal syphilis task force, countered that declaring an emergency wouldn’t make much of a difference. The government, she said, already has a “dramatic and coordinated response” involving several agencies.

The FDA recently approved an emergency import of a similar syphilis treatment made by a French manufacturer that had plenty on hand. According to the company, Provepharm, the imported shots are enough to cover approximately one or two months of typical use by all people in the U.S. (The FDA would not say how many doses Provepharm sent, and the company said it was not allowed to reveal that number under the federal rules governing such emergency imports.)

Clinics applaud that development. But many of them can’t afford the imported shots.

The government could do more to rein in the cost.

Clinics and hospitals that primarily serve low-income patients often qualify for a federal program that allows them to purchase drugs at steeply discounted prices. Pharmaceutical companies that want Medicaid to cover their outpatient drugs must participate in the program.

One factor in determining the discount price is whether a pharmaceutical company has raised the price of a drug by more than the rate of inflation. Because Pfizer has hiked the price of its Bicillin shots significantly over the years, the government requires that it be sold to qualifying clinics for just pennies a dose. Otherwise, a single Pfizer shot can retail for upwards of $500. The French shots are comparable in retail price and not eligible for the discount program.

Several clinic directors also said they worried that drug distributors were reserving the limited supply of the Pfizer shot for organizations that could pay full price. For several days in January, for example, the website of Henry Schein, a medical supplier, showed doses of the shot available at full price, while doses at the penny pricing were out of stock, according to screenshots shared with ProPublica. When asked whether it was only selling shots at full price, a spokesperson for Henry Schein did not respond to the question.

Local health departments that qualify for the discount program told ProPublica they’ve had to pay full price at other distributors, because it was the only stock available.

The Health Resources and Services Administration, the federal agency that regulates the discount program, said that a drug manufacturer is ultimately responsible for ensuring that when supplies are available, they are available at the discounted price. When asked about this, Pfizer said that it has “one inventory that is distributed to our trade partners” and that hospitals and clinics that qualify for the discount program are “responsible for ensuring compliance with the program and orders through the wholesaler accordingly.” The company added, “Pfizer plays no part in this process.”

In October, on Weinberg’s regular search for shots for her Mississippi clinic, she found doses of Bicillin for sale at the discounted price and purchased 40. “The idea that we’re supposed to be hoarding treatment is a horrific compact,” she said. Word got out that the clinic, called Plan A, has some shots, and other clinics began sending pregnant patients there.

The clinic’s supply is dwindling. Weinberg is happy to get the shots to patients who need them. But she’s not sure how much longer her reserve will last — or if she’ll be able to find more when they’re gone.

This post was originally published on Articles and Investigations – ProPublica.

by Max Blau, Duaa Eldeib, Jeff Ernsthausen, Maya Miller, Lizzie Presser and Annie Waldman

About one in five people in the United States have a mental illness. Yet for many, accessing care can be extremely difficult. Our team of investigative reporters plans to spend the next several months digging into the reasons behind these persistent issues.

To identify and report important stories, we need to hear from people throughout the mental health care system. Those we’ve spoken to so far have shared details about common problems. Many seeking care can’t find a provider or program with availability, with some waiting months — or even years — to get the care they need. Meanwhile, insurance companies have refused to pay for necessary care while those in crisis often land in overcrowded emergency rooms. On top of that, systemic pressures can cause providers to misdiagnose patients, especially women and people of color.

Now, we want to go deeper, by gathering the perspectives of the people who know the country’s mental health system best.

Mental health care providers have already begun sharing the challenges they face in trying to get patients the treatment they need, from barriers to joining or staying in an insurance network to navigating low reimbursement rates. We would like to connect with as many of you as possible in order to identify themes and patterns in this space.

We also hope to hear from others who know intimately how the mental health care system operates, like those who work in behavioral health wings at insurance companies or independent medical review organizations. Please fill out the form below if you have worked, or currently work, as a medical director, actuary or network manager or have any other insider insight to share.

And if you have tried to navigate this system, either by yourself or on behalf of a friend or family member, we hope to learn from you too. Your insights help us understand the consequences of the structure and delivery of mental health care today.

Our team may not be able to respond to everyone personally, but we will read everything you submit. We appreciate you sharing your story, and we take your privacy seriously. We are gathering these stories for the purposes of our reporting and will contact you if we wish to publish any part of your story.

We are the only ones reading what you submit. If you would prefer to use an encrypted app, see our advice at propublica.org/tips. You can also email our reporting team at mentalhealth@propublica.org.

This post was originally published on Articles and Investigations – ProPublica.

by Jennifer Berry Hawes

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up for Dispatches, a newsletter that spotlights wrongdoing around the country, to receive our stories in your inbox every week.

London Lamar rose from her chair in the Tennessee Senate last spring, stomach churning with anxiety as she prepared to address the sea of men sitting at creaky wooden desks around her. She wore a hot pink dress as a nod to the health needs of women, including the very few of them elected to this chamber, none of whom were, like her, obviously pregnant. She set her hands onto her growing belly.

The Senate clerk, a man, called out an amendment Lamar had filed. The Senate speaker, also a man, opened the floor for her to speak. The bill’s sponsor, another man, stood near her as she grasped a microphone to discuss the matter at hand: a tweak to the state’s near-total ban on abortion access for women.

Lamar glanced around at her fellow senators, three quarters of them men. The imbalance was even more stark in the state’s House of Representatives, where almost 9 in 10 members were men. And Tennessee is no anomaly. Across much of the Southeast, state legislatures are more than 80% male.

On this day, the Tennessee Senate was poised to take a final vote on a bill that would allow abortions to prevent a woman’s death or “serious risk of the substantial and irreversible impairment of a major bodily function.” Lamar stood to pitch a broader health exception.

A Democrat in the substantial minority, she could have appealed to her female Republican colleagues. Although they oppose abortion, they bring to the debate their personal knowledge of women’s bodies and experiences. But there were only three of them in the 33-member Senate. Instead, Lamar turned to the two dozen Republican men.

She reminded them that four years earlier, she was 32 weeks pregnant and serving in the House when her blood pressure suddenly spiked. Her placenta ruptured. Her son died in utero, and she faced a terrifying risk of a stroke. “It’s personally one of my biggest fears that this thing would happen again to me,” she told them. If it did, she feared the proposed law would prevent her doctor from protecting her health.

She implored the men to see her as a family member: “I’m telling you as your own colleague, as your niece, baby girl. I love you all. It is real, not only for me but for women all across the state.”

Scenes like this play out across the Southeast, even as the U.S. as a whole saw a record number of women elected to statehouses last year. Nationally, one-third of legislators are women, the most in history. In recent years, three states — Nevada, Arizona and Colorado — achieved parity.

But much of the Southeast lags far behind.

Seven States, Almost All in the Southeast, Had Legislatures That Were Less Than 20% Women in 2023

Women made up less than half of the state legislatures in nearly every state.

State legislature data provided by Reflective Democracy Campaign and current as of July 27, 2023. (Lucas Waldron/ProPublica)

More than a century after the 19th Amendment gave women the right to vote, women constitute fewer than 1 in 5 state legislators across much of the region: in Alabama, Mississippi, South Carolina and Tennessee, according to the Center for American Women and Politics at Rutgers University, which studies women’s political participation. West Virginia has the lowest percentage of any state; less than 13% of its state lawmakers are women.

As Lamar spoke, 14% of Tennessee’s legislators were women. The Republicans, including two of the three GOP women in the Senate, swiftly rejected her amendment. She sank into her chair and pressed one palm over her heart, the other onto her belly, and practiced deep breathing exercises to help keep her blood pressure from soaring again.

Men Made Up Half of Tennessee’s Population but 86% of the State’s 2023 General Assembly State legislature data provided by Reflective Democracy Campaign and current as of July 27, 2023. (Lucas Waldron/ProPublica)

Soon after, another Black woman in the chamber stood to speak. Holding the microphone, Sen. Charlane Oliver read prepared remarks calling for an exception in cases of rape. Then, she paused. She glanced to her right and bit her cheek. She cleared her throat.

Fighting tears, she began again: “I rise before this body as a sexual assault survivor.”

Sitting nearby, Lamar listened intently. She hadn’t known this about her fellow senator, yet Oliver felt compelled to share her trauma so publicly to try and sway the men around them. Tears welled in Lamar’s eyes as well. She passed her colleague a tissue.

Waiting to Run

Three decades have passed since a U.S. Senate Judiciary Committee composed entirely of men grilled Anita Hill on live TV. Some of the men were dismissive, others downright hostile toward her testimony that Clarence Thomas, her former boss, had sexually harassed her. Millions watched it on live TV, and the Senate later confirmed Thomas to the U.S. Supreme Court.

The following year, voters elected a record number of women to Congress in what became known as the “The Year of the Woman.” Yet while Congress and many states have seen steady growth in numbers of female lawmakers over the years since then, much of the Southeast has stagnated or barely inched forward.

Tennessee has fewer female legislators than it had 20 years ago. Mississippi improved less than 3 percentage points since then; South Carolina fared only slightly better. Louisiana gained 6 percentage points, and Alabama gained 7.

This leaves large majorities of men controlling policy — including laws that most impact women — at a time when the U.S. Supreme Court is sending more power to statehouse doorsteps. Abortion, a key issue of the day, provides one window: A ProPublica analysis of comprehensive legislative data kept by the Reflective Democracy Campaign found that with few exceptions, the states with legislatures most dominated by men as of July have some of the nation’s strictest abortion bans.

Of the 10 states where men made up the biggest share of the legislatures, eight have strict abortion bans, and one outlaws it at around six weeks, before many women know they are pregnant. Five don’t allow exceptions for women who are raped.

Seven of the 10 states have trigger laws in place that went into effect after Roe v. Wade was overturned. Those were adopted by legislatures years earlier. But the passage of time hasn’t always resulted in more women at the table. Four of the seven legislatures have more female lawmakers today, albeit barely, than when they passed their trigger laws. One state has remained stagnant. And two have fewer female lawmakers than when they passed their trigger laws.

These are all conservative states, so it doesn’t mean women who oppose abortion rights would have voted differently. But their voices were hardly at the table.

Men’s numeric dominance means they also control what issues get debated in the first place — and which do not. Female lawmakers have been more likely to champion issues like maternal health, children’s welfare and education, said Jean Sinzdak, associate director for the Center for American Women and Politics.

“Women’s presence is correlated with more conversation and more issues on the agenda that are related to women,” said Anna Mahoney, executive director of the Rockefeller Center for Public Policy and the Social Sciences at Dartmouth College who wrote the book “Women Take Their Place in State Legislatures.”

Women haven’t run for legislative seats as often as men for many reasons: money, history, incumbency. But no factor plays a bigger role in the Deep South than its entrenched patriarchal culture and gender norms, female legislators and experts say.

“Traditional gender roles are more deeply enforced in Southern states,” Sinzdak said. “There’s more of a paternalistic streak that runs through them culturally.”

For instance, across party lines, virtually every Southern female legislator ProPublica interviewed for this story said voters had asked her who would care for her family if she won. Carla Litrenta, a South Carolina attorney, was breastfeeding when she filed to campaign for a House race that she ultimately lost in 2022. Voters often looked at the Democrat’s two young children and asked how she would find time to serve in office. “It was ironic because the male candidates had full-time jobs,” she said, “and I was working part time.”

Statehouse gender disparities are more acute among Republicans. Across the country, two-thirds of female state legislators are Democrats. The 20 states with the lowest percentages of women in their legislatures are almost all led by Republicans.

Republican organizations “are not recruiting as many women to run and not giving as much support to run and be successful candidates,” Sinzdak said. “You reap what you sow.” South Carolina state Rep. Sylleste Davis, a Republican, agreed that the GOP needs to seek out more female candidates but added, “I don’t get the sense that they are.”

ProPublica reached out to Republican Party leaders in Southeastern states with the fewest female lawmakers asking why more women weren’t running and what they could do to recruit more female candidates. Only one responded.

Scott Golden has worked as chair of Tennessee’s Republican Party for seven years. He said the party doesn’t target recruitment based on gender. During his tenure, including working for a prominent female lawmaker, the barriers he has seen for women are primarily structural ones. The state’s legislature operates part time but requires substantial attendance during those months, and the capital of Nashville sits a four-hour drive from some districts. Both make legislative seats less appealing for women with young children who want to stick closer to home.

“Families with volleyball and softball and senior dances and homecoming parades, it’s difficult for anybody to do it — much less women to do it — during those years,” Golden said. Instead, he sees far more Republican women running for local elected offices where they can earn full-time salaries and travel less. “It’s time, money and proximity,” he said.

Indeed, like other female Republicans ProPublica interviewed, Davis did not seek a legislative seat until her children were older. Yet that decadeslong wait for women like her to run means that legislatures have fewer members who bring current firsthand experience with pregnancy, birth and child care — knowledge critical to crafting the policies that govern these issues.

Women also are also less likely to consider running unless they are asked. Rep. Anne Thayer, a Republican who hails from a particularly religious and conservative area of South Carolina, said she didn’t consider seeking public office until people approached her. Even then she demurred.

“I gave that good Southern Christian girl response in that I’ll pray about it,” she recalled. A small-business owner and mother, she had worked behind the political scenes but “never wanted to be the one driving the bus.”

Supporters kept asking, however, and today she and Davis are two of four female committee chairpeople out of 28 standing committees in a statehouse whose rolling grounds are adorned with a dozen monuments to white men. Only one specifically celebrates female South Carolinians — and it stands behind the domed building to honor Confederate women “reared by the men of their state,” as the inscription reads.

When Republican Katrina Shealy was elected to the South Carolina Senate a decade ago, she was the only woman in the chamber. A few years later, she made national news for rebuking a male colleague who had called women “a lesser cut of meat,” referencing the biblical story of God creating Eve from Adam’s rib.

Shealy made national news again last spring. By then, she had four female colleagues in the 46-member Senate. All five women united across racial and party lines to help thwart a near-total abortion ban. (A sixth woman, a Democrat, was elected to the Senate on Jan. 2.)

Whatever their views on abortion, Shealy noted, women bring to the debate personal experience with menstrual cycles, pregnancy complications and motherhood. Male lawmakers around her simply don’t have that. “When they get up and talk about women’s issues,” she said, “it is just so frustrating because they don’t know what they’re talking about.”

After she joined her female colleagues to filibuster the strict abortion ban, they called themselves the Sister Senators and later received the JFK Profile in Courage Award. But they couldn’t defeat a bill that outlawed abortion after around six weeks of pregnancy.

Months earlier, South Carolina’s legislature — one of the most male-dominated in the country — had replaced the state Supreme Court’s lone female justice with a man. (Two of the three nominees for the seat were women.) The female justice had penned the lead opinion rejecting a similar six-week ban the previous month. The newly all-male court, now the country’s only state supreme court without a female justice, promptly upheld the six-week ban.

The Backdrop of History

The case that overturned national abortion rights, Dobbs v. Jackson Women’s Health Organization, originated in Mississippi, the state where white men in particular are most overrepresented in the Legislature. They hold more than 60% of the seats even though they account for only 28% of the state’s population. That means every white man is represented more than two times over in the body, according to a ProPublica analysis of comprehensive legislative and census data tracked by the Reflective Democracy Campaign.

Women, however, are underrepresented by more than a factor of three. It’s about the same for Black women and white women.

Yet when it comes to the impact of abortion restrictions the Legislature passed, Black women are disproportionately affected. They are four times more likely to die of pregnancy-related causes than white women. They also are more likely to experience unintended pregnancies. And in 2021, 80% of abortions reported in Mississippi were performed on them, the highest percentage of any state in the nation.

This is happening against history’s disturbing backdrop: centuries of white men controlling Black women’s reproduction. Enslaved women’s health once was only as important as the human property their bodies could produce. Black women had to birth the children of white men who raped them. They were forced to breastfeed white babies.

Michelle Colon, co-founder of a reproductive justice organization in Mississippi called SHERo, said this history has created a culture of devaluing Black women that persists today. Many state lawmakers “are the descendants of white men who basically controlled Black women’s bodies,” she said.

Black women in Mississippi aren’t alone. Across most of the Southeast, a region of former slave states, the more white men are overrepresented, the more Black women are underrepresented. This relationship doesn’t exist in other states that also have at least 5.6% Black women, the national average.

States with the Lowest Representation of Black Women in Their Legislatures Also Had the Highest Representation of White Men

In most Southeastern states, white men are overrepresented at the expense of other groups, especially Black women.

The chart shows representation ratios between the proportion of a demographic group in the state legislature and the proportion of that group in the state population. A ratio of 1 implies equal representation. This chart includes only states where Black women are at least as prevalent in the state’s population as the national average. State legislature data provided by Reflective Democracy Campaign and current as of July 27, 2023. (Lucas Waldron and Irena Hwang/ProPublica)

This imbalance is most pronounced in Mississippi, the state with the nation’s largest percentage of Black residents. “It’s not the year of the woman here,” said Tracy DeVries, executive director of the Women’s Foundation of Mississippi. “There’s no priority for women’s health. None. It’s just not important.”

Democratic Rep. Omeria Scott, a Black woman, has served in the Mississippi House of Representatives for three decades and sits on its public health committee, made up of 24 men and five women. The chair is a white man. As long as she could remember, it has always been a white man.

Scott also serves on the House’s Medicaid committee. Its chair also is a white man. He and the House speaker, another white man, stymied efforts in 2022 to extend Medicaid coverage, which pays for almost 60% of births in the state.

“White men handle those appropriations,” Scott said. “They handle the policy and the money in Mississippi.”

Black and White Women in Mississippi Were Dramatically Underrepresented in the State Legislature Compared with White Men Mississippi Legislature data provided by Reflective Democracy Campaign and current as of July 27, 2023. (Lucas Waldron/ProPublica)

In 2022, House Speaker Philip Gunn spoke to The Associated Press after blocking a Senate-backed effort to extend Medicaid for the state’s poorest new mothers from the federally required two months to a year postpartum. Gunn said that he was aware of the state’s high maternal mortality rate, but he had not seen evidence that extending coverage would save money. When asked if the move could save lives, he told the AP, “That has not been part of the discussions that I’ve heard.”

Only after the state’s strict abortion ban went into effect did Gunn agree to stop blocking the extension.

Republican Gov. Tate Reeves posted on social media, “In a post-Dobbs world — we may even have to be willing to do things that make us ‘philosophically uncomfortable.’” He would support the Medicaid extension as part of a pro-life agenda. “As I’ve said many times, it will not be easy and it will not be free. But it will be worth it, as more children of God are brought into the world!”

Neither Reeves nor Gunn responded to ProPublica’s requests for comment. Scott was pleased that the men finally stopped thwarting the extension of coverage for mothers. But it also felt like a consolation prize.

Triggering Confusion

Not quite a year had passed since the Dobbs decision when a Black woman named Nancy Davis sat before a Louisiana House committee. She urged the panel, chaired by a white man, not to punish women’s doctors if they abort nonviable fetuses.

“Step out of yourself for one minute, and try to envision what it’s been like for women in Louisiana,” she said.

During her visit to the capitol, Davis wondered: Where were the lawmakers who looked like her? Only nine Black women served in the entire Louisiana State Legislature — 6% in a state where they constitute 17% of residents. Yet Davis had just experienced very personally how a policy the Legislature passed directly affected women like her.

About a month after the Dobbs decision’s release, the 36-year-old mother arrived at a hospital for a routine check up. She was 10 weeks pregnant and thrilled. When an ultrasound technician slid a wand across her belly, Davis peered eagerly at the gossamer image emerging into view on the monitor beside her.

Then, she felt everything pause.

“Why does my baby look that way?” she asked. The top of his head looked amorphous, like mist fading into the dark.

The technician slipped from the room.

Davis burst into sobs. Leaping up, she tugged on her clothes and stared at the image through tears. A physician soon explained that it appeared the top of the skull had not formed, a fatal anomaly. Davis recalled her also assuring, “This is one of the reasons for an abortion.” The doctor was referring to a narrow exception in Louisiana’s trigger ban, which had just gone into effect.

But Davis was enrolled in Medicaid, which did not cover abortions. The procedure would cost $6,000 out of pocket at the hospital, she said, so the doctor sent her to an abortion clinic. Davis found it shuttered.

When she returned to the hospital, a woman explained that the doctor could no longer provide her an abortion. “The director of the hospital shut it down because of the Louisiana abortion law and the fetus still having a heartbeat,” Davis recalled her saying. (Debate later ensued over whether the state’s abortion laws would have allowed her to get an abortion.)

For a month, Davis carried a fetus she knew would die. Some nights, she slipped outside and clutched her stomach, crying alone in the darkness so she didn’t wake her fiance, Shedric Cole, or their other three children. But what could she do?

Desperate, she emailed local news outlets. A TV reporter came to interview her, and the video went viral. She wound up in touch with Planned Parenthood of Greater New York and The Brigid Alliance, which helped her book flights to New York and pay for a hotel, child care and meals.

On Sept. 1, Davis and Cole arrived at a Manhattan clinic 1,400 miles from home. An abortion wasn’t something she could imagine a woman wanting. But she did want their nightmare over.

After they returned home to Baton Rouge, Davis became determined to give more of a voice to women. She wants to run for office.

Feeling Overwhelmed

After Lamar, the Tennessee senator, pleaded for broader abortion exceptions to protect women’s health, she drove home to Memphis, a majority-Black city in a county with the state’s highest ratio of pregnancy-associated deaths. She felt exhausted and disregarded.

“Black women are telling you, basically you’re killing me, and it’s like you don’t give a damn,” Lamar said. “My life is less valuable than theirs, and that is what hurts the most.”

Tennessee Democratic state Sen. London Lamar at the state Capitol in Nashville. (Diana King, special to ProPublica)

Four months later, in August, she gave birth to a baby boy. Although she developed postpartum preeclampsia, she recovered and celebrated her healthy son with round brown eyes and chubby cheeks.

Yet, despite much-appreciated help from her own mother, the 33-year-old single mom quickly learned why many women with young children often don’t run for office. One day shortly after her maternity leave ended, she handled a phone call while greeting her mother, saying goodbye to her baby, saying goodbye to her mother and then rushing to her car to head to an assignment for her job overseeing a program that develops the Black teacher pipeline, stopping to fill the air in her car tires on the way.

“It’s overwhelming,” she said. “You feel like no one understands or cares, but also you know that you represent the masses of women dependent on you to be their voice.”

With January’s arrival, the Tennessee General Assembly is among legislatures across the Southeast getting back to work. Behind the door of her Senate office, Lamar hung a white board to track the bills she cares about most. It lists abortion, maternal mental health, doula certification and timely processing of rape kits.

She mustered hope for the months to come. Last year, she discovered a tactic that helped her pass a bill to study the expansion of doula services in Tennessee. She planned to employ the strategy again. To gain support from her male Republican colleagues, she had learned to present her bills as “pro-life” rather than pro-woman.

About the Data: How We Analyzed Representation in State Legislatures

ProPublica obtained a database detailing the demographic makeup of state populations and legislatures from the Reflective Democracy Campaign. The database includes race and gender information for all state legislators and was last updated in July, prior to the 2023 state elections. The state demographic data is from the 2020 census, with additional information from 2022 annual population estimates.

To assess representation of demographic groups, ProPublica calculated the ratio of percent representation of the group in the state legislature to percent representation in the state as a whole. A ratio of 1 can be interpreted as the proportion of a demographic in the state legislature equaling the proportion of that demographic among the state’s general population. A ratio larger than 1 means that the demographic is more present in the legislature than in the state population, and a ratio less than 1 means that the demographic is less present in the legislature than expected, given their prevalence in the state population. For instance, a ratio of 2 should be interpreted as there being twice the proportion of a demographic group in the state legislature as in the state population, and is described as overrepresentation by a factor of 2.

To be sure, an individual is not solely represented by the politicians who share their identity, nor does an individual politician work only towards the interests of constituents of the same identity. However, the expectation that a demographic group should be proportionally represented among politicians as in the population as a whole is intuitive and widely used as a proxy for representation in news reports.

When assessing the representation of Black women and white men, we limited our analysis to states with a meaningful proportion of Black women. Black women make up between 0.2% to nearly one-fifth of state populations. As a result, we used the average proportion of Black women in state populations, 5.6%, as a threshold and focused on the 21 states with a higher-than-average proportion of Black women. We used the U.S. Fish and Wildlife Service’s definition of the Southeast and used linear regression to assess trends in representation within and outside of the Southeast.

Irena Hwang contributed data analysis.

This post was originally published on Articles and Investigations – ProPublica.

by Kathleen McGrory and Neil Bedi

This article contains descriptions of mental illness and suicide.

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up to receive our biggest stories as soon as they’re published.

A veteran with a known history of suicidal thoughts showed up at a St. Louis hospital before dawn one morning and was left unmonitored in an exam room for hours.

Another was deemed at risk of suicide by a hospital psychiatrist in Washington, D.C., then forcibly discharged, even as he tried to stay, by the same hospital’s emergency department.

Another still in Pittsburgh was assigned a behavioral health nurse who failed to complete thorough suicide screenings or review his suicide safety plan, and didn’t follow up when he said he wished he was dead.

In all three cases, independent inspectors documented serious failures by the Department of Veterans Affairs. And in all three cases, the veterans involved went on to kill themselves or other people.

The lapses were similar to ones examined by ProPublica last week in an investigation of the VA’s handling of two veterans with serious mental disorders. Both suffered for years with inadequate care from the same clinic in Northern California, they told reporters. Their stories ended in tragedy.

The problems appear to be systemic. Over and over, the hospitals and clinics in the VA’s sprawling health care network have fallen short when it comes to treating people with mental illness.

That conclusion emerges from a ProPublica review of all of the reports published by the VA’s inspector general since 2020. That includes 162 regular surveys of facilities and 151 investigations that were triggered by a complaint or call to the office on a wide variety of alleged health care problems.

If you or someone you know needs help:

• Call the National Suicide Prevention Lifeline: 988
• Text the Crisis Text Line from anywhere in the U.S. to reach a crisis counselor: 741741
• If you are a veteran, call the Veterans Crisis Line: 988, then press 1

Issues with mental health care surfaced in half of the routine inspections. Employees botched screenings meant to assess veterans’ risk of suicide or violence; sometimes they didn’t perform the screenings at all. They missed mandatory mental health training programs and failed to follow up with patients as required by VA protocol.

One in 4 of the reports stemming from calls or complaints detailed similar breakdowns. In the most extreme cases, facilities lost track of veterans or failed to prevent suicides under their own roofs.

Sixteen veterans who received the substandard care killed either themselves or other people, the review revealed. An additional five died for reasons related to the poor care, such as a bad drug interaction that the reports say could have been prevented. Twenty-one such deaths is a meaningful count even for a health care system that has more than 9 million people enrolled, in the view of Charles Figley, a Tulane University professor and expert in military mental health. The VA has struggled with mental health care for decades, he said. “It’s a national disgrace.”

For grieving family members, it is incomprehensible. “It was never my expectation that [the VA was] going to solve his problems,” said Colin Domek, the son of the veteran in Pittsburgh. “My expectations were that someone who was saying ‘help me’ would receive some kind of help.”

The inspector general reports reviewed by ProPublica have limitations. The individual investigations can be narrow. The reports offer only broad suggestions as to whether individuals should be held accountable for breakdowns and provide little sense of whether they actually were. Even together, they don’t capture the full reality of the VA’s 1,300 health care facilities. But they do start to assemble a meaningful picture of the system’s most chronic shortcomings when it comes to treating people with mental illness.

The VA declined requests for an interview for this story. In a statement to ProPublica, VA press secretary Terrence Hayes said “there is nothing more important to VA than providing high-quality mental health care to Veterans” and that the agency was “grateful” to the inspector general’s office for its oversight. He noted that last year, more than 80% of veterans who participated in VA surveys reported being satisfied with the mental health care they received through the agency.

In a separate statement, VA Inspector General Michael Missal said, “Our reports have repeatedly illustrated that it is critical that [Veterans Health Administration] leaders remain vigilant to problems, ensure care is coordinated, and take swift, responsive actions that address root causes and promote accountability.”

The VA’s health care system is the nation’s largest. The agency operates about 170 medical centers and 1,100 outpatient sites, and it provides counseling services at some 300 facilities known as vet centers. In the last fiscal year, the VA provided mental health services to about 2 million veterans, according to agency figures.

The system has notable strengths. The VA has played an important role in developing treatments for conditions such as post-traumatic stress disorder and traumatic brain injury, and provides critical training opportunities for psychiatrists, psychologists and social workers nationwide.

But the number of suicides among veterans has remained stubbornly high, ticking up to 6,392 in 2021, the most recent year in agency statistics. And acts of violence by veterans with mental illnesses have continued making news, including two mass shootings in Atlanta last year alone.

Experts told ProPublica the failures revealed in the inspector general reports point to broad problems, including inadequate mental health staffing, outdated policies and the inability to enforce high standards across a large, decentralized health care network.

“It’s a very sad thing,” said M. David Rudd, a psychology professor at the University of Memphis for whom the Rudd Institute for Veteran and Military Suicide Prevention is named. “You can sit here today and predict with great accuracy how many deaths there are going to be over the next five years. Yet there are unlikely to be any meaningful, significant changes.”

When there are allegations of patient care issues, mistakes or policy violations inside a VA health care facility, it is often up to the agency’s independent inspector general to investigate. The office can then write a report explaining what happened and offering recommendations for improvement. Facilities typically follow the recommendations.

The inspector general’s reports don’t name the veterans or any doctors or nurses — a deliberate choice intended to protect their privacy. They obscure gender and specific dates, too. In several cases, however, ProPublica was able to match details from the reports with information contained in news stories or lawsuits and interview the veteran’s relatives.

One of those cases involved Kenneth Hagans, a 60-year-old father of four who served as a private in the Army in the early 1980s.

In September 2021, Hagans showed up at the John Cochran Veterans Hospital in St. Louis complaining of bladder problems and depression, records show. By then, he had been receiving care at the facility for more than two decades and treated for substance abuse and suicidal thoughts.

The nurse who first saw Hagans that morning determined he was not at risk of self-harm. But instead of using the computer to call up a questionaire to assess his risk of suicide, the nurse recited the questions from memory, then left Hagans unmonitored in an exam room.

The nurse claimed to have notified the on-call physician, who was “resting” on a stretcher in another exam room when Hagans arrived, according to the inspector general report on the case. But video footage did not support that claim, the report said. A second nurse alerted the physician an hour after Hagans’ arrival. But the physician was feeling the effects of a vaccine and slow to respond, the physician told investigators.

An hour after that, Hagans was found dead in the exam room. He had used a cord to take his own life.

The inspector general report, which was published in June, found that the nurse had failed to monitor Hagans and that the nurse and physician were responsible for a delay in his care. It also raised questions about the quality of the suicide screening Hagans received. (Later, when asked by investigators to recall the questions on the assessment by memory, the nurse could not, records show.)

Additionally, the report drew attention to an email sent by an emergency department leader regarding the inspector general’s investigation into Hagans’ death. “Everybody needs to know this is NOT the opportunity to air grievances,” the leader wrote to a staff physician. “The [inspector general] will be trolling for evidence of leadership and administrative malfeasance that allowed a veteran to kill himself in our [emergency department]. Appropriate responses to direct questions are: yes, no, I don’t know, and I don’t remember. BOOM!”

The inspector general recommended that the medical center standardize its processes for suicide screenings and monitoring patients — and that local leaders in St. Louis investigate the possible interference in the inspection. In a written response to the report, facility director Candace Ifabiyi did not challenge any of the inspector general’s findings and said she agreed with the recommendations.

Kenneth Hagans and his son Graie (Courtesy of Graie Hagans)

Hagans grew up as one of eight siblings in Hammond, Louisiana. As a kid, he hopped onto trucks bound for New Orleans and hung out in the French Quarter. He saw an opportunity in the Army, his son Graie told ProPublica. But in the years that followed, he struggled with drug addiction and homelessness. He was in and out of his children’s lives.

Hagans never talked about any traumatic experiences he had while serving in the military, Graie said. But in 2017, he started getting help for post-traumatic stress disorder stemming from that period in his life. The treatment, which he got through the VA, was making a difference, Graie said. “He was learning about the impact of PTSD on his life,” he said. “Some things were making more sense about his behavior.”

Graie was stunned to learn the circumstances of his father’s death, he said. His call with a hospital official that day raised questions. Shouldn’t the VA hospital system that treated his father for psychiatric issues have been familiar with his mental health history? Shouldn’t the staff have kept an eye on him?

Hagans’ death could have and should have been prevented, Graie contended. “There’s an institutional and structural failure if what happened to my dad can happen inside a VA hospital,” he said.

In a statement to ProPublica, the VA St. Louis Health Care System expressed its “deepest condolences to Mr. Hagans’ family and friends.” The statement added that health system leaders had established standard policies for suicide screenings and monitoring patients, and initiated “appropriate personnel action” for individuals involved in the case. The health system declined to share specific details.

Hagans’ case was not an anomaly, ProPublica’s review of records found. Many of the breakdowns in care involved problems with screenings for the risk of suicide and violence.

Screenings are simple; they generally entail asking a patient a few questions about their thoughts and actions to assess their potential of self-harm or violence. But research has shown they can help save lives.

Screenings played a key role in the case of Nicholas Domek, a former Army engineer and demolition expert whose three decades in the military included serving overseas in Operation Desert Storm and in the Army Reserves.

In 2018, Domek attempted suicide and was admitted to the Pittsburgh VA’s inpatient mental health unit. He also attempted to kidnap his former domestic partner and, in early 2019, was readmitted to the mental health unit for homicidal thoughts.

The VA gave Domek a designated behavioral health nurse practitioner; the two met monthly after his second hospitalization. The nurse practitioner documented Domek’s thoughts of suicide after each of their four visits, according to the inspector general report. But there was no evidence the nurse practitioner did a thorough suicide risk assessment or reviewed Domek’s suicide safety plan as protocol dictates.

Two weeks after Domek’s last meeting with the nurse practitioner, Domek killed the former domestic partner, Mary Jo Kornick. He then killed himself.

The nurse practitioner could not remember why no risk assessment was done, the report said. The inspector general determined the nurse practitioner had copied and pasted information from prior visits throughout his records, making them difficult to follow and interpret.

Domek’s son Colin told ProPublica the nurse practitioner should have done more. He said the nurse practitioner knew about his dad’s plans; he had been in the room when his father told the nurse practitioner he intended to kill both himself and Kornick, he said.

Mary Jo Kornick (Courtesy of Sherry Kornick)

Colin Domek described his father as a hard worker who enjoyed fishing and geocaching, a recreational activity in which participants search for hidden objects outdoors. He loved being a soldier, Colin said, and the whole family took pride in his service. One year at Christmastime, they decorated their tree with tiny paratroopers. The family was on the local news when Domek deployed to Iraq.

More recently, though, Nicholas Domek had had his left leg amputated and struggled with depression, Colin said. He’d started seeing a mental health professional and trying medications. “In his mind, the VA was going to take care of him,” Colin said. “It was never a thought to see someone outside the VA. That was never on the table.”

The tragedy ravaged a second family. Kornick was a loving mother and grandmother who worked at a home for older people, her daughter Sherry Kornick told ProPublica. She loved to laugh and play pranks. She made up songs to make people smile.

She was killed the day before Mother’s Day. “I don’t even want to celebrate Mother’s Day” anymore, Sherry said, breaking down into tears. “And I realized it’s not fair to my kids who want to celebrate me.”

In its investigation, the inspector general determined the nurse practitioner had made similar missteps with at least seven other patients and had copied and pasted “significant sections of notes” from prior evaluations in 97% of the 143 patients’ health records it reviewed.

The report on the case recommended that the VA’s Pittsburgh health system consult with its human resources and legal teams to “determine whether personnel action [was] warranted.” The facility director agreed with the recommendation but noted the nurse practitioner retired in January 2022.

In a statement to ProPublica, the Pittsburgh health system said it was “devastated when [it] learned about the challenges Mr. Domek faced and took immediate action to prevent another Veteran from having a similar experience.” That included developing a refresher training program for suicide-risk evaluation and management as well as a new template for electronic health records.

Nicholas Domek (National Personnel Records Center)

Other VA facilities missed screens, too, ProPublica’s review found. At one Arizona hospital, a social worker didn’t screen a veteran who called to reestablish mental health care, instead referring the veteran for psychological diagnostic testing. The veteran wasn’t offered treatment for a month and later died by suicide. A South Carolina hospital didn’t do a suicide risk assessment on another veteran who was being released from its inpatient mental health unit as VA policy requires. That veteran also died by suicide.

There were other cases, too, in which veterans with serious behavioral health issues were overlooked or didn’t get the help they needed.

The VA Medical Center in Houston, for example, lost track of a veteran with chronic schizophrenia who sought treatment at the facility’s emergency room in 2020 for back pain. The veteran was found off-site four days later in cardiac arrest and died the next day, according to an inspector general report. In interviews with the investigators, hospital staff said the veteran had been shuttled between departments due to possible COVID-19 symptoms and then wandered off. In a statement to ProPublica, Houston health system leaders said the situation did not “represent the quality health care southeast Texas Veterans have come to expect from Houston VA” and that they had improved their COVID screening processes and trained employees on wandering patients.

At the VA Medical Center in Washington, D.C., a psychiatrist found a veteran with drug withdrawal symptoms to be at moderate risk of suicide and recommended in-patient treatment. The psychiatrist walked the veteran to the facility’s emergency room for follow-up. But doctors there didn’t read the psychiatrist’s notes and determined the veteran should be discharged. When the veteran refused to leave, an attending physician called the VA police and was heard saying the veteran could go shoot himself. The veteran died from a self-inflicted gunshot wound six days later.

Hospital leaders agreed with the findings in the inspector general report and noted that the physician who made the insensitive remark was replaced as a contract provider. They told ProPublica in a statement that a second physician on contract had resigned from the facility.

Experts say such missteps often stem from the fact that employees are overworked and undertrained.

Demand for mental health services within the VA has been surging, and the system has long endured mental health provider shortages. A survey published by the inspector general in August found that more than three quarters of the VA’s 139 networks of hospitals and associated clinics had reported “severe” shortages of psychiatrists, psychologists or both.

Separately, a report from the Government Accountability Office from 2022 concluded that one-fifth of all large VA health care facilities failed to meet requirements that mental health providers be available within primary care settings to help assess veterans and follow up with their care. The facilities said “persistent staffing challenges” were largely to blame.

The VA is far from the only health care organization that has had difficulty filling critical behavioral health positions amid a national shortage of providers in recent years. But Carl Castro, a professor at the University of Southern California and director of its Center for Innovation and Research on Veterans and Military, said the VA in particular has struggled to compete for providers.

“The system doesn’t pay them enough money,” he said. “It works them to the bone. That’s why it is hard to recruit people.”

Indeed, in exit interviews, VA psychologists cited insufficient pay, too much work and job stress as among the top five reasons they left their positions, according to data published by the VA in October.

The VA, for its part, has steadily increased its funding for mental health over time, federal budget data shows. In 2022, the figure surpassed $13 billion, up from about $6 billion a decade earlier. In 2022, mental health was about 13% of the total health care budget. In 2012, it was about 12%.

Agency leaders have acknowledged that growing the mental health workforce is a priority. They recently announced a targeted hiring initiative intended to bring 5,000 new mental health professionals into the system over the next five years. The agency also boosted the pay range available for staff psychiatrists last year and is offering more flexible schedules to employees to help battle burnout, it said.

“We are fully engaged in a multi-faceted strategy to attract qualified candidates, leverage all flexibilities and incentives to meet the workforce needs, and monitor staffing ratios and other data regularly to help inform facility staffing priorities and decisions,” the agency said in a statement to ProPublica.

Aside from staffing issues, experts said the VA struggles with consistency across its huge system, which is broken down into 18 regional networks and dozens of smaller hospital systems, each with its own leaders and policies. “If you’ve seen one VA facility,” said Alyssa Hundrup, a director on the Government Accountability Office’s health care team, “you’ve seen only one VA facility.”

The national policies alone have generated confusion, the reports showed. According to the inspector general’s office, two of the handbooks describing the mental health policies all VA facilities must follow had been outdated for years. One was missing the agency’s most recent guidance on managing patients at risk of suicide or suffering from PTSD or major depressive order.

Dr. Sandro Galea, dean of the Boston University School of Public Health who chaired a congressionally mandated committee on the treatment of PTSD in military and veteran populations a decade ago, said the individual tragedies highlight the need for a wholesale look at the VA’s mental health care system “to identify gaps and holes.”

“That needs to happen,” Galea said. “It’s clearly time.”

Emma Dash is sure something needs to be done. Her husband, a 33-year-old Army veteran named Brieux Dash, was struggling with PTSD when he was involuntarily committed to West Palm Beach VA Medical Center in 2019. He took his own life during his stay.

Brieux Dash and his family (Courtesy of Emma Dash)

Dash had been a wheeled vehicle mechanic in the Army from 2006 until 2015. He deployed to Iraq twice, his Army records show. When he returned home the second time, he was different, Emma said. He would scream in the middle of the night. Sometimes, he erupted into violence in his sleep.

Emma, who worked in the West Palm Beach VA medical center’s pharmacy department, had her husband committed to the medical center’s inpatient mental health unit once before, she said. “It got him back to being him,” Emma recalled. So when he attempted suicide at home in 2019, she followed a similar course of action.

The VA’s inspector general later found that a nursing assistant who had been assigned to do patient safety checks every 15 minutes the day Brieux Dash died had also carried out other tasks contrary to unit protocol. In addition, video cameras that were supposed to help monitor patients hadn’t worked in years.

The findings shocked Emma, who had believed the facility was the best equipped to help her husband. She sued the VA in 2022 and settled for $5.75 million last year, an amount her lawyer characterized as “historic.”

In a statement to ProPublica, the West Palm Beach VA Medical Center said it installed sensor alarms and new surveillance cameras after Dash’s death and added a new checklist to address environmental risks for patients on inpatient mental health units. “Anytime a Veteran in our care dies by suicide,” the statement said, “it is heartbreaking.”

Emma Dash had a simple message for the VA, she told ProPublica: “Do better!”

If you have information about mental health care services provided by the VA, email VAmentalhealth@propublica.org.

This post was originally published on Articles and Investigations – ProPublica.

by Kathleen McGrory and Neil Bedi, ProPublica, photography by Loren Elliott for ProPublica

This article contains descriptions of mental illness, violence and sexual assault.

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up to receive our biggest stories as soon as they’re published.

Marty and Candy Larsen were in their pajamas, getting ready to watch a movie in the living room, when they heard their 27-year-old daughter scream.

“I need help!” Julia cried.

They could see her standing just a few feet away, her long blond hair unkempt, her blue-gray eyes at once alert and vacant. She’d looked like this in other moments when fear overtook her and reality slipped away. But a new sight jolted them upright: their daughter’s fingers, wrapped around a pink handgun.

Julia pounded the weapon against a wall, then squeezed its trigger, sending a bullet down an empty hallway. “Help me!” she shrieked.

The parents scrambled in different directions. Candy was on with 911 while Marty reached toward his daughter. “Julia, stand down,” he said. “How can we help you if you don’t stand down?”

But Julia fired again, repeating her plea like a mantra.

“Help me!” she cried. “Help me!”

The need had been building for almost six years, since she returned home from a stint as a Navy firefighter aboard a warship in the Persian Gulf. She was tormented by the rippling trauma of an on-duty sexual assault and grappling with symptoms that led her to be diagnosed with a psychotic disorder.

She was dependent on the Department of Veterans Affairs for care. Just that morning, when her latest crisis began, a nurse at the local VA clinic in Chico, California, had told her mother to bring her in. When they arrived, a telehealth provider was too busy to see Julia. A social worker asked questions to gauge her risk of suicide or violence; even though Julia refused to answer, she was sent out into the world and told to return for the next available appointment, in 11 days.

If you or someone you know needs help:

• Call the National Suicide Prevention Lifeline: 988
• Text the Crisis Text Line from anywhere in the U.S. to reach a crisis counselor: 741741
• If you are a veteran, call the Veterans Crisis Line: 988, then press 1

Such dysfunction had become the norm at the Chico clinic, one of several hundred such community facilities designed to serve veterans who live far from the nation’s big cities. From the outside, it looked like a haven for heroes: a state-of-the-art building with a gleaming atrium, a large American flag flying out front. But the clinic hadn’t had a full-time, on-site psychiatrist in five years. A single nurse was responsible for connecting hundreds of veterans, some with serious mental illness or active suicidal thoughts, with an ever-changing lineup of telehealth providers in different time zones.

The military has long drawn recruits from remote towns across America, promising them a lifetime of health care in return for their service. But the VA has seldom staffed those same communities with the mental health professionals needed to help them once they return home. Two decades of war in Iraq and Afghanistan have turned this chronic shortcoming into an emergency. The demand for mental health care has grown at a rate that’s triple the rate of growth for all VA medical services. Anguished employees, doing what they can with threadbare staffing and glitchy technology, are burning themselves out trying to avert disasters that feel inevitable. In Chico, nurses and social workers cried after their shifts, and the new site manager, a veteran and longtime health care administrator, had made a grim prediction: “We are going to kill someone,” she told colleagues.

If hindsight is 20/20, agency officials should have exquisite vision by now. Their files are littered with cautionary tales of missed screenings and insufficient follow-up; in at least 16 instances since 2019, veterans who received inadequate care wound up killing themselves or other people; an additional five died for reasons related to the poor quality of care. Each time, investigators with the VA’s Office of Inspector General swooped in to determine whether the system failed; each time, they concluded it had.

To plug the holes, the VA grew its nationwide mental health workforce by more than 4,000 last year and plans to hire an additional 5,000 professionals over the next five years. But the sense of dread lingers. It’s a “perfect storm of real potential for gaps in care,” said Alyssa Hundrup, a director on the Government Accountability Office’s health care team.

Just as violence was erupting in Julia’s home on Jan. 3, 2022, another veteran sat alone in his dark bedroom, not far away, ruminating. Deep circles hung below his eyes. An unruly beard covered his chin.

Andrew Iles, 33, had come to believe the government was monitoring him and that his mother was in on the conspiracy. He, too, had tried to get help at the Chico clinic but for years was passed from provider to provider. Recently, all he could get was a psychiatric pharmacist who prescribed him pills. He felt abandoned, concluded the VA had never wanted to help him and slipped into a state of paranoia so intense that he threw away his belongings and holed himself up inside his mother’s house.

His sister, once his protector and closest ally, had stopped bringing her family to see him. His mother had tried to remove all of the firearms from the house but missed a few. Andrew had stowed them away.

Concow Elementary School (Loren Elliott for ProPublica)

Chico, California, sits in the northern Sacramento Valley, in the shadow of the Sierra Nevada mountain range. It’s a college town home to museums and breweries, funky cottages and trendy restaurants. Climb into the foothill elevation, though, and you enter another world. Aside from some big-box stores and picturesque downtowns, it’s mostly wilderness dotted with private homes. Cellphone service is spotty. Roads snake through dense forests.

Andrew Iles grew up in a particularly isolated community called Concow. When he was a kid, only a few hundred people lived there. They drove the same mountain roads, shopped at the same convenience store. There were enough children for a small school, but each grade level had just a handful of students. Most were eligible for free lunch.

Andrew’s family lived a mile off the main road in a one-room, A-frame home that sometimes had no electricity or running water. His parents, Glen Iles and Sue Hill, used methamphetamines. They disappeared, often for days at a time, and let other drug users hang around the house. Some of them forced Andrew and his big sister, Ashley Hill, to engage in horrific sex acts. The kids stayed quiet about the abuse. “We were so afraid to say anything,” Ashley recalled.

The siblings sought refuge on the mountainside. It was their own wild playground, full of creeks to splash in and salamanders to chase. But violence was never far. Once, when Andrew and Ashley were in grade school, they found their mother handcuffed to a refrigerator, bleeding from three gunshot wounds. A few years later, they watched Glen hold Sue at gunpoint and threaten to shoot her. Ashley called 911. Glen fled into the forest on his ATV but was caught and sent to prison. The ordeal made the local newspaper.

The arrest was a turning point. Sue stopped using drugs. She found a new partner and moved the family a few times, ultimately settling in a small city in the foothills called Oroville. After finding steady work at a rent-to-own furniture store and a new place to live, she started rebuilding her family.

Andrew grew into a gangly teenager with a sly sense of humor who wore braces, dyed his hair bright colors and swept his long bangs across his face. He and his friends were emo kids; they listened to Fall Out Boy and spoke out against the war in Iraq. Andrew dated the same girl for years. He showered her with attention and wrote her silly notes. He put considerably less effort into his schoolwork. As graduation neared, he started to believe he needed structure and discipline, and he thought the Air Force might provide it. Plus, he had a mind for math and technology, and the idea of working on multimillion-dollar airplanes appealed to him. “If I don’t do something like this,” he told his mother, “I’ll be in Oroville for the rest of my life.”

As a new airman, Andrew was stationed in Arizona as an aircraft electrical and environmental systems apprentice. His supervisors rated his performance as “truly among the best.” His first evaluations touted his “unrivaled initiative” and described him as a “superior performer” and “stellar airman.” One evaluation ended with a simple declaration: “Promote now!”

Andrew raised his hand for an assignment on Kunsan Air Base in the Republic of Korea where he could work on F-16 fighter jets. He traveled the country by train, visiting university cities so he could meet people his age. He found it thrilling to be somewhere so different from Concow with such freedom to explore.

His next tour took him to Ramstein Air Base outside Frankfurt, Germany, to work on hulking C-130s. He was 22 then, excited to visit Berlin, Amsterdam and Paris. But he was increasingly looking over his shoulder, wondering what his peers were saying about him.

Around that time, Andrew sent emails to his mother and sister that described neighbors spying on him. Sue and Ashley found the letters troubling. In some ways, Andrew sounded like his father, who had never been diagnosed with mental illness but was prone to paranoia and conspiracy theories.

Andrew had reached the age when, experts say, a typical life can start to veer off course. It is generally believed that some people have a greater biological risk of developing psychotic disorders than others. Genetics can play a role. Environmental factors like stress can trigger the onset of illness or make it worse than it would have been. Symptoms tend to begin when people are in their late teens or early 20s, as their brains mature.

Andrew sought out behavioral health services on the base, he said. But he was certain his bosses saw him differently after that. He felt some treated him like he was less capable, while others seemed to think he was faking. He considered ending his life.

In late 2010, long before Andrew was supposed to leave Germany, he wrote his commanding officer saying he no longer believed he could do his job and asking to leave the military, he recalled. The Air Force approved his request for separation, giving him an honorable discharge, records show, but required him to transfer his remaining active duty service to the reserves, he said.

When asked about the circumstances of Andrew’s separation, an Air Force spokesperson, Michael T. Dickerson, said he could not comment on anything related to an individual’s physical or mental health or the nature of his or her discharge.

Andrew flew back to the United States. He was active in reserves in northern California for a period. But his growing fears about government surveillance kept his mind in constant motion. At night, he thought he could hear strangers talking about him through doors and windows. By 24, he’d moved back in with his mom and stepdad in Oroville, the one place he’d dreaded ending up.

First image: Andrew Iles and his sister, Ashley Hill, as young children. Second image: Andrew’s high school ID card. Third image: Andrew’s Air Force portrait. (First and second image: Courtesy of Ashley Hill. Third image: United States Armed Forces.)

Julia Larsen grew up a 40-minute drive from Andrew in a quaint foothills town called Paradise. Her father worked for the post office. Her mother ran a home day care. The youngest of three daughters, Julia was bound by few rules. She spent most of her time outdoors, searching for animals or digging in the red earth. A treasured family photo shows her holding a catfish she reeled in herself.

People who knew Julia as a teenager describe her as bubbly and a free spirit. Her senior superlative in high school was “biggest daredevil.” Her family was always camping or hiking together. On weekends, when her friends came over for backyard sleepovers, her mother often joined them around the campfire. In Julia’s mind, Paradise lived up to its name. But like many young people, Julia was eager to escape the place she was from. So one day, she and some girlfriends struck up a conversation with the local Navy recruiter.

Julia told her parents while the family ate dinner together at the kitchen table. Marty, a Navy veteran with an anchor tattooed to his forearm, was elated. “I couldn’t stop bragging about her,” he would later recall. Candy worried about Julia’s safety overseas but trusted her to make the right decision. The two were more like sisters sometimes than mother and daughter.

Julia arrived at boot camp outside Chicago in June 2012. She was 18. She traded a colorful sweater and jeans for a Navy-issued T-shirt and shorts and lined up to have her hair cut. The recruits marched and swam and studied and shot. It was easier than she expected. Her parents and middle sister came to watch her graduate. They cheered from the bleachers and then celebrated over deep-dish pizza and White Castle hamburgers.

When it came time to specialize, Julia became a flight deck firefighter. She went for additional training in the Florida Panhandle, where she learned to work a high-pressure hose and handle rescue equipment. That fall, she was assigned to the USS Theodore Roosevelt, an aircraft carrier undergoing major upgrades near the Naval base in Norfolk, Virginia. Her home was a cramped bunk with a flimsy mattress deep in the ship’s belly. She placed the few personal possessions she had in a tiny locker and reported for duty.

She doesn’t remember much about the first day or even the first week. But she remembers the comments a supervisor started making about her body, and the way he pressed himself against her when she was chopping lettuce for the salad bar. Later, while she was on dishwashing duty in the ship’s scullery, he approached again, she said. He grabbed her arms and folded them across her chest. Unbuttoned her top. Turned her around. He was bulky, much taller than her 5-foot-7-inch frame, and had a thick, dark mustache. Julia had never felt so helpless. She fought to free herself from his grasp, burning her right wrist on a hot dishwasher in the struggle, but was completely overpowered. Before he could get much further, another young sailor walked in. The supervisor got spooked and scurried out.

Julia told a friend. Then she told the team that handled sexual assault allegations, she said. She wasn’t afraid of repercussions. She had been so excited to enlist. Was this what the rest of her military experience would be like? The Navy gave her the option to transfer to a different ship. For Julia, it was an easy call. She no longer wanted to be on the Roosevelt.

But while the Navy offered Julia a fresh start, it didn’t offer her mental health services, she said, as Department of Defense policies demanded. “I would have taken them up on it,” she told ProPublica. Asked to respond, a U.S. Navy spokesperson said, “While we cannot comment on the care Ms. Larsen may or may not have received, the Navy takes mental health for our Sailors seriously.”

It was, experts said, a crucial missed step. Research shows a clear association between military sexual trauma and mental health conditions including post-traumatic stress disorder, depression and suicidal ideation. Studies have shown treatment can help reduce PTSD and depression symptoms, which sometimes emerge years after the traumatic event.

Julia was assigned to the USS Kearsarge, a massive assault ship that was already in the Middle East to support troops in the global war on terrorism. During her second deployment to the region, in the spring of 2016, a Harrier jet burst into flames departing from the Kearsarge’s flight deck. Julia was startled by the deafening pop. She sprinted toward the burning aircraft with the other firefighters to battle the blaze. “Her initial response, quick action and knowledge during an AV-9B Harrier fire on the flight deck was pivotal in the prevention of a major catastrophe and loss of lives,” her supervisors wrote in her performance evaluation.

Almost four years to the day after she began boot camp, Julia returned to California. She moved into a house in the southern Central Valley with her boyfriend from the Navy and enrolled at the local college. She set a goal of earning a degree in social work and becoming someone who could help veterans. But Julia couldn’t shake the feeling that something was wrong. She had trouble concentrating on schoolwork. Some nights, she couldn’t sleep. She sought out counseling through the VA.

By June 2017, Julia had started feeling scared of the world around her. One night, she was certain she could hear people walking on her roof and called the police. The officers who showed up made her feel even more anxious. She worried they would take advantage of her. She pushed one and wound up at the police station. She was later taken to a psychiatric unit.

As soon as Marty heard what happened, he drove six hours to pick up his daughter. He packed her belongings into suitcases and hitched her car to the back of his truck. On the ride back, Julia was convinced they were being followed. She begged her father not to draw attention by driving too fast or changing lanes. Marty was stunned to see his easygoing daughter acting so out of character. “It was like a switch had flipped,” he recalled.

First image: Julia and her father, Marty Larsen, fishing in the 1990s. Second image: Julia and her mother, Candy Larsen, on a family trip. Third image: Julia’s senior portrait at Paradise High School. Fourth image: Julia’s Navy portrait. (First, second and third image: Courtesy of Marty Larsen. Fourth image: United States Armed Forces.)

For veterans in the foothills like Andrew and Julia, the Chico clinic was all they had.

Its mental health team had been trying for years to convince regional leaders to add more positions. Even when the staff included two psychiatrists and a psychologist, plus a nurse, counselor, social workers and designated mental health administrators, the team struggled to keep up with growing demand, former employees told ProPublica. The clinic had more than 500 mental health patients, many of whom had complex illnesses.

The department’s longtime manager, a psychiatrist named Russell Cottrell, recalled once noticing that other rural mental health departments in the region had more personnel per patient than Chico did, he said. When he asked about the discrepancy, his bosses stopped sharing the data. He fumed, he said.

“I don’t think they paid attention to the growth we had,” Cottrell told ProPublica. “I would point it out and I’d get in trouble.”

By the summer of 2016, the staff had gotten smaller, and Cottrell was the only psychiatrist in the building. Cottrell was no stranger to hard work; an Army veteran, he had devoted his career to treating the most challenging mental health cases. But he was tired of begging for personnel and running out of energy. That fall, he made plans to retire.

The lead mental health nurse, Michelle Angela, sent an email to a regional mental health leader in the wake of Cottrell’s retirement announcement. “We would like to invite you to come visit us at Chico Behavioral/Mental Health for an update on what the plan will be,” she wrote. “In addition to our concerns as staff members, our local veterans have been asking if there will be [a medical doctor] on site for their mental health needs.”

No such doctor was hired. Instead, the clinic filled the gap with a combination of visiting doctors and doctors in other locations who connected with patients through computer screens.

In many ways, the Chico clinic was on the forefront of telepsychiatry, then an emerging way to deliver treatment that had the potential to broaden access to veterans in remote locations. But some mental health professionals had reservations. While virtual sessions might work for some patients, they worried others needed the trust and connection that could only be established in person.

For Andrew, who started coming in for treatment after his father died in 2013, the changes were disorienting. Andrew had been seeing Cottrell and starting to untangle his thoughts. When Cottrell retired in February 2017, Andrew was assigned to a temporary doctor, then a specialized pharmacist who wrote prescriptions, he said. Andrew resented the arrangement. “I wanted to talk to someone routinely,” he said, “not just get a load of meds.”

Julia first arrived at the clinic on June 23, 2017. She wouldn’t maintain eye contact with anyone; while in the waiting room, she rearranged the chairs. That day, clinic staff offered her little in the way of answers. “She was informed that Chico VA Behavioral Health is an outpatient clinic and we do not have a psychiatrist on site,” a social worker wrote in her medical records.

The following month, Julia started coming into the clinic for telehealth appointments with an off-site provider. Her records show she was diagnosed with PTSD from combat and military sexual trauma and bipolar disorder, the latter of which she disputes.

For a while, the patchwork system in the clinic’s mental health department seemed to be working, current and former employees told ProPublica. But cracks started to show. In 2018, the psychologist left. And the clinic sometimes found itself without a telehealth provider available to refill medications or see patients in crisis, emails obtained by ProPublica show.

That November, a wildfire started burning up in the foothills. It was called the Camp Fire because it originated off Camp Creek Road. The blaze grew into a raging inferno that affected virtually everyone in the region. More than 10,000 homes were destroyed, including the one belonging to Marty and Candy Larsen where Julia grew up. At least 85 people died.

The day after the fire, when the air was still heavy with smoke and ash, Cottrell showed up at the clinic to help. He knew the fire would increase the demand for mental health services, he said. Seven months later, he came back on a part-time basis to help out until the clinic could hire a new full-time psychiatrist on site.

Months passed without a hire. Meanwhile, the Chico clinic moved into a gleaming new facility just a few miles away. The VA’s website trumpeted its status as a green building with energy-reducing and cost-saving features. But none of that improved the mental health department, former employees said. In fact, the new building eliminated a designated waiting area for veterans in crisis as well as private offices for mental health practitioners, meaning patients were seen in bare-bones exam rooms that evoked a school nurse’s office.

Amid the turmoil, Andrew struggled. When he noticed Cottrell back in the clinic, he wondered if Cottrell hadn’t really retired but had discarded him as a patient. Experts who were not involved in Andrew’s care told ProPublica that the constant provider changes would likely have reinforced Andrew’s paranoia and made him feel less connected to his care. One said the churn would have felt like a parent continually rejecting their child.

Julia’s life had become a rollercoaster. Some days, she felt great. She enrolled at Chico State and floated around its red-brick campus. “She could be very lucid and be her old self,” Marty recalled. “We kept thinking, she’s over it.” But stressors would trigger her. She would flash back to her darkest moments, start feeling paranoid. It wasn’t unusual for her to go days without sleeping.

She wanted counseling, she told ProPublica. But at the clinic, there was never enough time to get into it all. The focus seemed to be more on medication than talk therapy, she said. “They wanted to help me and [then] shoo me along,” she said.

An abandoned swimming pool in Paradise (Loren Elliott for ProPublica)

The strain on the clinic would only get worse.

The same month that COVID-19 swept across the country, the mental health team learned its designated administrative assistant would be shared by several departments. That made managing appointments even more difficult. Not long after that, one of the two telepsychiatrists started seeing fewer Chico patients.

Cottrell had had enough, he said. He decided he would retire for good at the end of the year. “I saw it as a lost cause,” he told ProPublica.

That summer, a psychiatrist on the East Coast was hired to do virtual visits on a part-time basis. But increasingly, technical problems were disrupting appointments.

In emails to regional mental health leaders, Chico’s front-line workers insisted that hiring an on-site psychiatrist should be the priority and noted the VA’s own guidelines, which said veterans who were suicidal, violent or in need of immediate medical attention should not be referred for telehealth services. “We currently have numerous serious suicidal ideation patients,” a nurse named Diana McMaster wrote. “With losing Dr. Cottrell, do we not need a psychiatrist in the building? A lot of times it is left up to Michelle and me to manage what happens with these patients on our side of the video. … That puts us in a precarious position.”

Dr. David Gellerman, the chief medical director for mental health services in the VA’s Northern California region, replied, writing, “No, we are not placing anyone in a precarious position. We can’t hire someone who does not exist… if we get a good psychiatrist or [psychiatric nurse practitioner] candidate who can be on location, we can try, but so far we have not had any acceptances.”

Gellerman pointed out that precautions were being relaxed in the pandemic. “Care by telehealth is better than no care at all,” he added.

Reached by email by ProPublica, Gellerman did not comment on the correspondence. He referred a reporter to the VA’s public affairs office that covers the broader region of Northern and Central California, Nevada, Hawaii and the Philippines, which did not respond. A national spokesperson said agency guidance does not establish absolute conditions under which virtual care should not be given.

By then, Andrew had been diagnosed with schizoaffective disorder, a mental illness marked by a combination of schizophrenia and mood disorder symptoms. People with the disorder can experience psychotic symptoms, losing their connection to reality.

Andrew hadn’t been employed since returning to Oroville. He had come to believe people were trying to kill him, even his family. He spent most of his time alone in his bedroom. He slept upright in his computer chair and ate only food that came in a can so nobody could poison him.

Sue quit her job to care for her son. She made sure he had canned food to eat and drove him back and forth from his VA appointments. In conversations with her sister, Sue worried Andrew’s doctors were always changing and he wasn’t getting the help he needed. Ashley felt helpless watching her little brother slip away. He was withdrawn and angry, a far cry from the outgoing kid she remembered. She thought back on how she had tried to protect him when they were children. “It felt like I’d failed,” she said.

The pandemic had rekindled Julia’s paranoia, too, so much so that she began to believe strangers wanted her dead. That May, her oldest sister, Jordan Pepper, a clinical mental health counselor in Ohio, traveled to Chico and helped her to seek in-patient treatment at the VA hospital near Sacramento, California. Doctors there diagnosed her with general psychotic disorder.

Records show Julia went to the Chico clinic in the weeks and months that followed. Candy and Marty took turns accompanying her. Candy made it a point to get to know the people who cared for her daughter, in some cases getting their personal cellphone numbers. She tried to stay optimistic.

In the fall of 2021, the telepsychiatrist who had been seeing Julia stopped seeing Chico patients. That November, Julia had a virtual appointment with a psychiatric nurse practitioner she had never seen before who prescribed a drug called atomoxetine to help her concentrate, her medical records show. But two days later, Julia called back and asked for something that would work faster. The nurse practitioner prescribed an antidepressant called bupropion and instructed Julia to take the two medications together, her records show.

More than a year later, in its report on Julia’s case, the VA’s inspector general would note that the combined use of atomoxetine and bupropion can trigger psychotic or manic symptoms. The nurse practitioner told investigators that despite what his notes said, he had not intended for Julia to take both. It isn’t clear which, if any, Julia took. She doesn’t remember.

Around that time, Julia began taking note of unusual things she believed were happening to her: strangers following her at the dog park, electronic files going missing. She installed a camera in her car and started carrying a pink handgun she bought after separating from the Navy.

The Chico clinic’s mental health department, meanwhile, fell further into disarray, current and former employees told ProPublica. Several other telehealth providers left, including the Connecticut-based telepsychiatrist who was seeing Andrew. Those who stayed buckled under the weight. “We were abandoned,” said Belva Fay, a senior social worker who was also the clinic’s acting manager for eight months. “We were trying to run a clinic with nobody to prescribe medications, nobody to see emergency cases, nobody to talk to these clients who are angry. …

“We kept saying, there is going to be a problem,” Fay said. “This is going to blow up.”

By the time Michelle Gradnigo started as the clinic’s site manager in October 2021, disaster felt all but certain. Gradnigo, a retired lieutenant colonel in the Army and longtime military health care administrator, was so troubled by the lack of on-site mental health care providers that she asked if the clinic’s primary-care physicians could handle some of the load, she said. The answer was no, she recalled.

“I reached out to anyone at the time who would listen and said we are going to kill someone,” she told ProPublica.

Michelle Gradnigo, the clinic’s former site manager (Loren Elliott for ProPublica)

VA officials told ProPublica the Chico clinic was trying to recruit mental health professionals by offering special salary rate increases, education debt reduction and relocation incentives.

Northern California VA leaders were also trying to grow the virtual mental health program. A proposal obtained by ProPublica through a Freedom of Information Act request shows that mental health vacancies were dogging clinics across the region and that “painstaking and time-consuming recruitment efforts” were bearing little fruit. The only positions drawing quality applicants, according to the presentation, were virtual.

The new Chico VA clinic (Loren Elliott for ProPublica)

When the sun rose over the Sierra Nevada mountains on the third morning of 2022, Julia’s eyes were already open.

She had been awake for days, a fact she blamed on what felt like a constant barrage of electric shocks. She had tried to stop them by covering her walls in aluminum foil, but it wasn’t helping. She wanted pills to calm her down. At 8 a.m., she left a message at the clinic that she was “in crisis and very anxious,” government records show. An hour later, she started texting her mother, who called the clinic in tears. The mental health nurse was home that day with COVID, so a nurse from another department took the call.

The nurse sent an instant message to Julia’s nurse practitioner, who was seeing patients from another location, asking if Julia should come into the Chico clinic or go to the VA hospital in Sacramento. The nurse practitioner wanted Julia to go to Sacramento, government records show. But the nurse misunderstood and told Julia’s mother to bring her to Chico.

Marty and Candy brought Julia to the clinic around 2:30 p.m. Her body was tense, her eyes red and heavy with tears. But the nurse practitioner never evaluated her. He had nine appointments that day and no time to see Julia, a violation of VA policy requiring same-day availability for patients in crisis.

A triage social worker tried to ask Julia questions to help determine her risk of suicide or violence, but Julia wouldn’t engage, records show. Instead, she quibbled with her diagnoses and voiced frustration over the recent change in her mental health provider. The social worker should have posed the questions to Julia’s mom, who was inside the clinic while Julia’s dad waited in his truck. Instead, she marked Julia’s disposition as “routine” and concluded she wasn’t a threat to herself or others. There is no indication the social worker asked about Julia’s access to guns or other lethal means.

Later, in an interview with the inspector general’s office, the social worker said she was unfamiliar with the protocols. She ultimately gave Julia the nurse practitioner’s next available appointment, in 11 days.

Julia stormed out of the clinic, furious that she had not been given the medication she wanted, her father recalled. Candy was frustrated; she wanted clear direction on how to help. Exhausted, they all headed back to Candy and Marty’s home, a cozy ranch on a remote hillside outside of Red Bluff, California.

Marty at his home in Red Bluff (Loren Elliott for ProPublica)

Back at home, Candy offered Julia some soup and a sandwich and tried to help her calm down. Julia was still agitated, but around 10 p.m., she took a sleeping pill and retired to her parents’ bedroom. When it was quiet, Candy and Marty got ready to watch a movie in the living room, hoping it might help them relax.

Just before 11 that night, a call came into 911 dispatch.

The recording captured Julia as she pleaded for help, then fired one gunshot, then another. The line stayed open for an hour, chronicling all that unfolded.

After the second bullet fired into nowhere, Candy was determined to lower the temperature. “We are trying to help,” she assured her daughter. “You gotta put the gun down first, honey.” Marty followed suit. “We’re here for you, OK?” he told Julia. “It’s not too late. Nothing bad has happened.”

For a moment, it seemed like Julia might relent. “OK,” she said quietly. “OK.”

Instead, she fired again.

Acting on intuition, Marty lept at his daughter in an effort to disarm her. He wrapped his arms around her, he said, and tried to overpower her. Could it have felt to her, in that moment, like she was back in the ship scullery, trying to escape the grip of her attacker? It’s impossible to know. But she felt threatened and thrashed with all the strength she could summon, smashing at his ribs and clawing his eyes.

The gun fired again. This time, a bullet struck her mother in the thigh, tearing through a large blood vessel.

Julia didn’t realize. She fought her father for control of the gun for the next 10 minutes, pistol whipping his head until he started slipping out of consciousness. After that, she told him she loved him and went outside. He came to, and by the time she returned, had retrieved his own pistol from a drawer in the kitchen. He warned Julia he would shoot and then did, he said, striking her once in each shoulder and once in the thigh.

When the police had Julia in their custody around midnight, both she and her father were seriously injured. Her mother was dead.

The morning after the shooting, her bereaved sister Jordan called the Chico clinic, she said. She wanted someone there to explain Julia’s mental illness to the authorities, to advocate for her sister. The staff member who answered knew nothing about the shooting. “Oh shit,” Jordan recalled hearing from the other end of the phone.

That afternoon, just before 4, the clinic’s phone rang again.

It was Andrew, who was in a particularly rough place. The departure of his telepsychiatrist had made him feel cast aside yet again. He’d enrolled in an intensive VA program for people with serious mental illness, but abruptly withdrawn, believing the VA didn’t really want to help him. On the call, he asked to speak to a doctor, he recalled. When he didn’t get one, he told a pharmacist that he had not been taking his medication and was feeling paranoid again. The pharmacist encouraged him to restart the prescription and scheduled a follow-up appointment in two days.

“Vet does not appear to be a harm to himself or others,” the pharmacist wrote in Andrew’s notes.

The next day, Jan. 5, Andrew sought out the family shotgun. While Sue had gotten rid of most of the firearms in the house just a few months earlier, Andrew had kept three in his possession.

Around 12:30 p.m., Andrew called 911 and told the dispatcher he had shot his mother. He was standing in the driveway when deputies arrived.

Sue died on the scene.

Ashley first learned there had been a shooting at her mother’s house when a friend called. She initially thought Andrew had taken his own life. She and her husband raced to the house, arriving alongside first responders. Deputies wouldn’t let her on the property until well after night had fallen. Ashley struggled to make sense of what had happened. Officials told her Andrew had performed CPR on his mother. “He tried saving her life,” Ashley said.

Background: A roadside sign in Paradise First image: Marty holding his wedding photos. Second image: Andrew and his mother, Sue Hill, at his boot camp graduation. (Background and first image: Loren Elliott for ProPublica. Second image: courtesy of Ashley Hill.)

Over the course of about 36 hours, employees’ worst fears about the Chico clinic had become reality. Many returned to the office in a state of shock.

Gradnigo, the site manager, requested a chaplain be brought into the clinic. But when she asked her supervisors what the next steps would be, she got no response, she said. Hoping the VA’s central office might intervene, she sent a tip about the shootings to the agency’s inspector general’s office, she said. She withheld her name so she wouldn’t face retaliation.

Gradnigo was fired in March 2022. The reasons provided to her were “inappropriate” comments and interactions with colleagues, records show. Gradnigo says the allegations about her conduct are exaggerated or false. She believes she lost her job because she reported wrongdoing and she is Black. She is pursuing a discrimination claim against the VA. The agency did not comment on the claim and told ProPublica it does not comment on personnel matters.

The inspector general’s office went on to investigate Julia’s case. Its report, which was published in February 2023, ticked off all the ways the clinic had failed, from medication mismanagement to not having a same-day access availability and improperly assessing her risk of violence. But the report did not mention a second patient involved in a violent act. It did not address systemic staffing issues. In fact, the office said it did not substantiate employee claims that facility leaders had failed to address their concerns about mental health staffing. The report found facility leaders had “ensured the use of telehealth and community care.”

The inspector general’s office declined to say why it did not include Andrew’s case in its report or publish a separate review. Spokesperson Fred Baker said the office reviews all complaints it receives. With respect to the employee concerns about staffing, he said, the inspector general’s office “found that leadership was taking steps to fill vacancies.”

The VA declined to make a clinic leader or official at its regional office in Sacramento available for an interview. In a statement, a Washington, D.C.-based spokesperson, Joseph Williams, said the agency “fell short” in treating Julia. “This incident does not represent the quality of care Veterans have come to expect from our facilities, or the standard to which we hold ourselves accountable, and we have taken several measures to ensure that it does not happen again,” he wrote.

The agency later said it could not answer specific questions about the care Julia or Andrew received due to privacy concerns.

After the shootings, the Chico clinic hired an on-site psychiatrist and an additional social worker, according to the inspector general report. The psychiatric nurse practitioner who prescribed the medications to Julia resigned. For the last several months, the mental health team has been fully staffed, the VA told ProPublica.

Andrew was charged with his mother’s murder in January 2022. He remains in the Butte County Jail. As early as this month, a judge could determine whether Andrew was legally sane at the time of the killing.

In an interview with ProPublica, Andrew described being stuck in a loop when he fired the shotgun. He was convinced his mom was poisoning him, something he now says was a delusion. “I love my mom,” he said. “I wish she was here.”

The Butte County Jail (Loren Elliott for ProPublica)

He doesn’t want to scapegoat the military or the VA for what happened, he said. He accepts responsibility. But he stressed that he had tried to get help from the VA repeatedly. “I do believe if there had been some form of intervention on their end, this might not have happened,” he said.

Ashley stayed in Oroville for a while, but it became impossible to go grocery shopping without someone staring at her or asking about her mother. “It felt like we were on display,” she said. Over the summer, she moved to Texas with her husband, young son and stepfather. She’s hoping to give her son the childhood she and Andrew never had.

Ashley is still mourning her mother, whom she described as a devoted grandmother and her closest friend. She has also been doing whatever she can to support Andrew in jail. She calls and texts him regularly and makes sure he has enough money in his account for the commissary. When he texted about playing Dungeons & Dragons recently, she replied like a mother might. “I’m so happy that you’re doing something fun,” she wrote. “I love you, Andrew.”

Ashley and her family at home in Texas (Loren Elliott for ProPublica) Andrew in court in December (Loren Elliott for ProPublica)

Julia was also charged criminally for her mother’s death. In January 2023, she was found not guilty by reason of insanity. She is now a patient at Patton State Hospital, a sprawling forensic psychiatric complex at the base of the San Bernardino Mountains about 60 miles east of Los Angeles. She reads books in the library, helps organize group activities like bingo and keeps her fingernails painted vibrant colors. She has a journal with positive affirmations on each page; she writes down the things she’s grateful for.

For some time after the shooting, Julia didn’t know she had caused her mother’s death. It was only after listening to the 911 recording months later that she began to understand what had happened. Coming to grips with that has been excruciating, she said. Her mom was her best friend. On a recent afternoon, during an open mic event at the hospital, she read a poem she wrote about their relationship. Audience members were brought to tears, she said.

It is hard to say what prompted the shooting. She recalls hearing an explosion in the distance — maybe a gas tank — and feeling like she needed to protect herself from some unknown threat. “It felt like I was unconscious, not awake,” she told a psychologist who evaluated her in January 2023, records show. “It felt like I was in a video game.” The psychologist speculated the explosion triggered her PTSD and may have put her in a dissociated state.

Julia isn’t sure how long she’ll be at Patton. She would have to be cleared by the hospital and the court to be released for supervised treatment in the community.

First image: Julia at Patton State Hospital. Second image: The poem Julia recently wrote and recited. (First image: Loren Elliott for ProPublica. Second image: Courtesy of Julia Larsen.)

It has taken many months for Marty to begin recovering. His ribs were fractured and his back was broken in two places. He needed 15 staples in his head. The emotional recovery, he knows, will be much longer. He’s chosen to stay in the hilltop ranch where the shooting took place. He bought the property to grow old there, and that’s what he still intends to do. He finds comfort in his fruit trees and livestock and the sweeping mountain views.

He said he forgives his daughter. He keeps her military photo in his wallet. But he is furious at the VA. “I want to punch VA in the face,” he said one afternoon late in the summer, while the sun poured into his den. To him, it was obvious what had needed to happen and what went wrong.

It crystallized deep in his mind the night of the shooting, after Julia had finally relented and he picked up Candy’s cellphone to speak with the 911 operator.

“She really, really needs help,” he told the operator while waiting for the police to come and arrest his daughter. “We tried to get her help at the VA. And, God, the VA didn’t really help that much.”

The dispatcher was empathetic. She’d heard Julia’s cries for help all night; dozens of them were captured in a recording of the call.

“I’m sorry the VA didn’t help her,” the dispatcher said.

Editor’s Note

After reading a February 2023 report by the Department of Veterans Affairs’ Office of Inspector General about inadequate mental health care at a VA clinic in Chico, California — a document that did not name any veterans or health care professionals or provide specific dates — ProPublica reporters wanted to more fully understand the tragedy that unfolded and what lessons it offered for the larger VA health care system. They spent months investigating the case at the center of the report involving a veteran named Julia Larsen as well as a second case involving a veteran named Andrew Iles who was also treated at the clinic.

The reporters interviewed Julia in person at Patton State Hospital near San Bernardino, California, and spent many hours interviewing her by telephone and video call. They traveled to St. Louis to meet with her attorneys. They reviewed hundreds of pages of her military personnel and medical records, as well as police reports from the night of the shooting and transcripts of interviews Julia gave to detectives and psychologists after her arrest. They listened to the 911 call Julia’s mother, Candy Larsen, made before she died. They interviewed Julia’s father, Marty Larsen, at his home in Red Bluff, California. They interviewed her sister Jordan Pepper, childhood friend Brittney Apel and former boyfriend Ignacio Gutierrez by telephone. In addition to Brittney and Ignacio, who served in the Navy with Julia, they interviewed four other people who knew Julia from the military, one of whom Julia told about the sexual assault and corroborated her recollections. They also interviewed Laurie Smith, a close friend of Julia’s mother.

The reporters interviewed Andrew in person at the Butte County Jail in Oroville, California, and by telephone. They reviewed some of his medical records, military performance reviews and discharge records, as well as his court records and family photos from his childhood. They interviewed his sister, Ashley Hill, at her home in Texas and his half-brother William Iles, aunt MaryJo Hendricks, former girlfriend Kayley Reni and childhood friend Alex Kenworthy by telephone. They interviewed a second childhood friend who declined to be named.

Both Julia and Andrew consented to ProPublica publishing information from their medical records about their diagnoses and medical histories.

To better understand the issues at the Chico clinic, the reporters interviewed a half-dozen current and former employees. They reviewed emails sent between 2016 and 2022 that detailed staffing issues, as well as hundreds of pages in former site manager Michelle Gradnigo’s discrimination complaint. They also reviewed an internal proposal from 2021 to grow the virtual mental health program and documents from the Office of Inspector General’s investigation obtained through Freedom of Information Act requests.

To put the case into broader context, the reporters reviewed and analyzed more than 300 routine inspections and investigative reports published by the VA’s inspector general since January 2020, some examining events that occurred in 2019. They brought their findings to experts and interviewed the relatives of three veterans who died by suicide after receiving inadequate mental health care from the VA. They reviewed national reports on mental health staffing and outcomes.

Overall, the reporters spoke to more than a dozen mental health professionals, researchers and policy experts. They consulted with some on how to interview people who have experienced trauma and been diagnosed with severe mental illness. They asked others to describe how the treatment Julia and Andrew received from the Chico VA clinic differed from generally established standards of care and offer insight into the issues facing the VA’s health system.

Loren Elliott contributed reporting. Design and development by Anna Donlan.

If you have information about mental health care services provided by the VA, email VAmentalhealth@propublica.org.

This post was originally published on Articles and Investigations – ProPublica.

by Ruth Talbot

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The quality of care that residents receive in a nursing home can be profoundly affected by who owns it, studies have shown. It’s not always clear who should be held accountable, though: Many nursing homes are owned by companies that are owned by other companies, obscuring who has the ultimate decision-making power. As more nursing homes are sold, information about an incoming owner’s performance in other homes becomes more relevant, as it may provide insight into how their latest acquisitions will fare.

To help navigate the confusing world of nursing home ownership, ProPublica’s Nursing Home Inspect now publishes detailed ownership information for facilities and an upgraded search to help you sift through the information.

The data comes from the Centers for Medicare & Medicaid Services, which publishes “affiliated entities” for nursing homes — lists of people or companies that have an ownership stake in or operational control over multiple nursing homes. CMS’ goal is to provide a better understanding of an owner or operator’s performance across all the nursing homes they are associated with. Some entities are affiliated with only a handful of homes, while others, like Genesis HealthCare or The Ensign Group, are affiliated with hundreds of homes across multiple states. Because CMS does not provide this data in a way that’s easy for most people to use, we’ve added it to our Nursing Home Inspect tool.

Our new affiliated entity pages allow users to easily explore data on each company or person who is responsible for nursing homes, listing all homes associated with that entity and showing recent serious deficiencies —  failure to meet care requirements — found at those homes. You can even view a list of all affiliated entities nationwide.

We also added detailed ownership information to individual nursing home pages, allowing users to see who has an ownership stake in the home, as well as who has managerial control over the facility and how long they have held that position.

To go along with these additions, we’ve also expanded the database’s advanced search capabilities so journalists and others can quickly identify affiliated entities that have a history of serious deficiencies or other problems. For instance, users can search for all serious deficiencies associated with Life Care Centers of America.

Separately, users can also now filter searches by F-tags, which are a system for specifying the types of compliance issues that may be found during a CMS inspection. These tags allow users to narrow their search beyond broad categories such as “infection control deficiencies” to more targeted queries such as deficiencies associated with reporting COVID-19 data to residents and families or ensuring staff are vaccinated against COVID-19.

ProPublica plans to continue enhancing Nursing Home Inspect with new data and features in the coming months. If you write a story using this new information, come across bugs or issues, or have ideas for improvements, please let us know!

This post was originally published on Articles and Investigations – ProPublica.