Clinics in states where most abortions are legal, such as Kansas and Illinois, are reporting an influx of inquiries from patients hundreds of miles away — and are expanding in response. Despite the Supreme Court’s overturning of federal protections in 2022, abortions are now at their highest numbers in a decade (Oona Zenda/KFF Health News).

Soon after a series of state laws left a Planned Parenthood clinic in Columbia, Missouri, unable to provide abortions in 2018, it shipped some of its equipment to states where abortion remained accessible.

Recovery chairs, surgical equipment, and lighting from the Missouri clinic — all expensive and perfectly good — could still be useful to other health centers run by the same affiliate, Planned Parenthood Great Plains, in its three other states. Much of it went to Oklahoma, where the organization was expanding, CEO Emily Wales said.

When Oklahoma banned abortion a few years later, it was time for that equipment to move again. Some likely ended up in Kansas, Wales said, where her group has opened two new clinics within just over two years because abortion access there is protected in the state constitution — and demand is soaring.

Her Kansas clinics regularly see patients from Texas, Missouri, Oklahoma, Arkansas, and even Louisiana, as Kansas is now the nearest place to get a legal abortion for many people in the southern U.S.

Like the shuffling of equipment, America’s abortion patients are traveling around the nation to navigate the patchwork of laws created by the Supreme Court’s Dobbs v. Jackson Women’s Health Organization decision, which left policies on abortion to the states.

Since that ruling, 14 states have enacted bans with few exceptions, while other states have limited access. But states that do not have an abortion ban in place have seen an 11% increase in clinician-provided abortions since 2020, according to the Guttmacher Institute, a national nonprofit that supports abortion rights. Over 170,000 people traveled out of their own state to receive abortion care in 2023, according to the institute.

Not all of the increase in abortions comes from interstate travel. Telehealth has made medication abortions easier to obtain without traveling. The number of self-managed abortions, including those done with the medication mifepristone, has risen.

And Guttmacher data scientist Isaac Maddow-Zimet said the majority of the overall abortion increase in recent years came from in-state residents in places without total bans, as resources expanded to improve access.

“That speaks, in a lot of ways, to the way in which abortion access really wasn’t perfect pre-Dobbs,” Maddow-Zimet said. “There were a lot of obstacles to getting care, and one of the biggest ones was cost.”

Last year, the estimated number of abortions provided in the U.S. rose to over 1 million, the highest number in a decade, according to the institute.

Still, abortion opponents hailed an estimated drop in the procedure in the 14 states with near-total bans.

“It’s encouraging that pro-life states continue to show massive declines in their in-state abortion totals, with a drop of over 200,000 abortions since Dobbs,” Kelsey Pritchard, a spokesperson for Susan B. Anthony Pro-Life America, wrote in a statement.

Organizations in states where abortion remains legal feel the ripples of every new ban almost instantly. One Planned Parenthood affiliate with a clinic in southern Illinois, for example, reported a roughly 10% increase in call volume in the two weeks following the enactment of Florida’s six-week abortion ban in May. And an Illinois-based abortion fund, Midwest Access Coalition, experienced a similar pattern the day the Dobbs decision was announced in June 2022.

“Our hotline was insane,” said Alison Dreith, the coalition’s director of strategic partnerships.

People didn’t know what the decision meant for their ability to access abortions, Dreith said, including whether already scheduled appointments would still happen. The coalition helps people travel for abortions throughout 12 Midwestern states, four of which now have total bans with few exceptions.

After serving 800 people in 2021, the Midwest Access Coalition went on to help 1,620 in 2022 and 1,795 in 2023. Some of that increase can be attributed to the natural growth of the organization, which is only about a decade old, Dreith said, but it’s also a testament to its work. It pays for any mode of transportation that will get clients to a clinic, including partnering with another Illinois nonprofit with volunteer pilots who fly patients across state lines on private flights to get abortions.

“We also book and pay for hotel rooms,” Dreith said. “We give cash for food, and for child care.”

The National Network of Abortion Funds, a coalition of groups that offer logistical and financial assistance to people seeking abortions, said donations increased after the Dobbs decision, and its members reported a 39% increase in requests for help in the following year. They financially supported 102,855 people that year, including both in-state and out-of-state patients, but have also seen a “staggering drop off” in donations since then.

Increased awareness about the options for abortion care, spurred on by an increase in news stories about abortion since the Dobbs decision, may have fueled the rise in abortions overall, Maddow-Zimet said.

Both sides now await the next round of policy decisions on abortion, which voters will make in November. Ballot initiatives in at least 10 states could enshrine abortion rights, expanding access to abortions, including in two states with comprehensive bans.

“Lives will be lost with the elimination of laws that protect more than 52,000 unborn children annually,” wrote Pritchard of Susan B. Anthony Pro-Life America, citing an analysis on the group’s website.

In the meantime, Wales said her clinics in Kansas don’t have enough appointments to accommodate everyone who reaches out about scheduling an abortion. In the early days after the Dobbs decision, Wales estimated, only 20% of people who called the clinic were able to schedule an abortion appointment.

The organization has expanded and renovated its facilities across the state, including in Wichita, Overland Park, and Kansas City, Kansas. Its newest clinic opened in August in Pittsburg, just 30 miles from Oklahoma. But even with all that extra capacity, Wales said her group still expects to be able to schedule only just over 50% of people who inquire.

“We’ve done what we can to increase appointments,” Wales said. “But it hasn’t replaced what were many states providing care to their local communities.”

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

Ten of 24 people injured by bullets at the Kansas City Chiefs Super Bowl parade were under 18 years old. Countless more children experienced the trauma firsthand. Gabriella Magers-Darger (left) was burned by sparks from a ricocheted bullet. Samuel Arellano was shot in the side (Christopher Smith for KFF Health News).

Six months after Gabriella Magers-Darger’s legs were burned by sparks from a ricocheted bullet at the Kansas City Chiefs Super Bowl parade in February, the 14-year-old is ready to leave the past behind.

She is dreading the pitfalls of being a high school freshman, even as she looks forward to being back with friends and at color guard, dance, and volleyball. She might even join the wrestling team to get some respect at school.

But the past remains ever present.

At a July Fourth gathering, a family friend brought noise-canceling headphones in case the fireworks became too much. Earlier in the summer Gabriella had a hard time viewing a relative’s gun collection, the handguns in particular. And she hyperventilated when she saw a family friend’s finger after it was sliced by accident — the sight of blood reminds her of seeing a fatally wounded Lisa Lopez-Galvan minutes after she was shot outside Union Station, the only person killed that day.

Her mom, Bridget Barton, said Gabriella has had a chip on her shoulder since the parade.

“She’s lost some softness to her, some gentleness to her,” Barton said.

Children are particularly vulnerable to the stresses of gun violence, and 10 of 24 people injured by bullets at the Feb. 14 parade were under 18 years old. Countless more children like Gabriella experienced the trauma firsthand. They’ve endured fear, anger, sleep problems, and hypersensitivity to crowds and noises.

A 15-year-old girl who was shot through the jaw and shoulder effectively dropped out of school for a time and daily panic attacks kept her from summer school, too. An 11-year-old boy shot in the side described feeling angry at school for reasons he couldn’t explain. A 5-year-old girl who was on her father’s shoulders when he was hit by gunfire panics each time her dad feels sick, fearing he has been shot again.

“She’s not the same kid. I mean, she’s definitely not,” said Erika Nelson, mother of the 15-year-old, Mireya, who has scars on her jaw and face. “You never know when she’s going to snap. You never know. You might say something or someone might bring up something that reminds her of that day.”

Guns overtook motor vehicle accidents as the leading cause of death for children in 2020, but a far higher number of kids are hit by gunfire and survive. Research suggests that kids sustain nonfatal firearm injuries anywhere from two to four times more often than they are killed by guns.

Scientists say the long-term effects of gun violence on kids are little researched and poorly understood. But the harm is pervasive. Harvard and Massachusetts General Hospital researchers found that during the first year after a firearm injury, child survivors experienced a 117% increase in pain disorders, a 68% increase in psychiatric disorders, and a 144% increase in substance use disorders. The mental health effects spill over — to mothers, fathers, siblings.

For many affected by the shooting in Kansas City, Missouri, the triggers began right away.

‘I get mad easily’

Just 10 days after Samuel Arellano was shot at the parade, he attended another big sporting event.

Samuel was invited to attend a University of Kansas men’s basketball game at Allen Fieldhouse in Lawrence. During a break in the game, with a video camera pointed at Samuel and his parents, former KU star Jalen Wilson appeared on the scoreboard and addressed him directly.

“I heard about your story,” Wilson, who now plays in the NBA, said on the big screen. “I’m so very thankful that you are here today and it is a blessing that we can have you to give you the love and support you truly deserve.”

Wilson asked the 16,000 fans in attendance to stand and give Samuel a round of applause. As the crowd clapped and an announcer bellowed about him being a “brave young man,” Samuel looked at his parents, then down at his feet, smiling shyly.

But minutes later when the game resumed, Samuel started to cry and had to leave the auditorium with his mom, Abigail.

“When it got pretty loud, that’s when he started breaking up again,” his dad, Antonio, said. “So she had to step out with him for a minute. So any loud places, if it’s too loud, it’s affecting him.”

Samuel, who turned 11 in March, was shot in the ribs on his right side. The scar on his back is barely noticeable now, but lingering effects from the parade shooting are obvious. He is seeing a therapist — as is his father, though Abigail has had a tough time finding a Spanish-speaking one and still hasn’t had an appointment.

Samuel had trouble sleeping in the first weeks after the shooting and often crawled in bed with his mom and dad. He used to get good grades, but that became more difficult, Abigail said. His personality has changed, which sometimes has shown up at school.

“I get mad easily,” Samuel said. “I [have] never been like this before but like, if they tell me to sit down, I get mad. I don’t know why.”

Traumatized children often have difficulty expressing emotions and may be given to outbursts of anger, according to Michelle Johnson-Motoyama, a professor of social work at Ohio State University.

“I’m sure for that child there is a sense of tremendous injustice about what happened,” Johnson-Motoyama said.

Especially right after the shooting, Samuel had panic attacks, Antonio said, and he’d break out in a sweat. Therapists told them that was normal. But the parents also kept him off his phone for a while, as there was so much about the shooting on the news and online.

Abigail, who works at a car dealership with Antonio, is anxious about seeing her son change, his suffering and sadness. She is also concerned for her three daughters, a 16-year-old and 13-year-old twins. Her father, Victor Salas, who was with Samuel at the parade, was also reeling in its aftermath.

“I’m crying and crying and crying about what happened,” Salas said in Spanish four days after the parade. “Because it was chaos. It doesn’t mean that families don’t love their family, but everyone took off to save their own lives. I saved my grandchildren’s lives, but what happens to the rest of the people? We’re not prepared.”

On the good side, Samuel felt very supported by the community in Kansas City, Kansas. Many people from his school stopped by in the first few days to visit, including friends and even a former bus driver, who was in tears. He has a “room full of candy,” Abigail said, mostly Skittles, his favorite.

An autographed football from Kansas City Chiefs quarterback Patrick Mahomes arrived on his birthday. It made him cry, his father said, which happens pretty often.

“There are good and bad days, days that are more normal and easier, and then there are days where the family has to be a little bit more aware and supportive,” Abigail said in Spanish. “He’s always been outgoing and talkative like his mom, but that has changed since the parade.”

Fourth of July a weeklong trigger

The Fourth of July was particularly harrowing for many of the young survivors and their families. Should they buy fireworks? Will they want to celebrate? And why do all the firecrackers going off in the neighborhood sound like gunshots?

Fourteen-year-old Gabriella needed help from her stepfather, Jason Barton, to light her fireworks this year, something she is ordinarily enthusiastic about doing herself. At the parade, like many people, the Barton family initially mistook the sound of gunfire for fireworks.

And Erika Nelson, a single mom in Belton, Missouri, feared even bringing up the holiday with Mireya, who has always loved Independence Day. Eventually Mireya said she didn’t want any big fireworks this year and wanted only her mom to set theirs off.

“Just any little trigger — I mean, it could be a light crackle — and she just clenched,” Erika Nelson said.

Patty Davis, a program manager for trauma-informed care at Children’s Mercy hospital in Kansas City, said even her clients who were at the parade but were not injured still flinch at the sounds of sirens or other loud noises. It’s a powerful response to gun violence, she said.

“So not just an accidental trauma,” she said, “but a trauma that was perpetrated for violent purposes, which can cause an increased level of anxiety for persons around that to wonder if it’s going to happen again. And how safe are they?”

Reliving getting shot

Random sounds, bright lights, and crowds can catch the kids and their parents off guard. In June, Mireya Nelson was waiting for her older sister after a dance recital, hoping to see a boy she knew give a flower to a girl everyone said he had a crush on. Her mom wanted to go, but Mireya shushed her.

“Then all of a sudden, there was a loud boom,” Erika said. “She dropped low to the ground. And then she jumped back up. She goes, ‘Oh my God, I was getting shot again!’”

Mireya said it so loudly people were staring, so it was Erika’s turn to shush her and try to soothe her.

“I was like, ‘Mireya, it’s OK. You’re all right. They dropped a table. They’re just moving stuff out. It was an accident,’” Erika said.

It took a few minutes for the shock to wear off and Mireya later giggled about it, but Erika is always on watch.

Her daughter’s early sadness — she watched movies for hours, crying throughout — has since changed to a cheekiness. Half a year later, Mireya will joke about the shooting, which tears her mother up. But maybe that is part of the healing process, Erika says.

Before the Fourth of July, Mireya went to Worlds of Fun, a large amusement park, and had a good time. She felt OK because there were security guards everywhere. She also enjoyed a visit to the local FBI office with a friend who was with her the day of the shooting. But when someone suggested a trip to the ballet, Mireya squashed it quickly — it’s near Union Station, the site of the shooting. She doesn’t want to go downtown anymore.

Erika said the doctor appointments and financial strains have been a lot to juggle and that her biggest frustration as a parent is that she’s not able to fix things for her daughter.

“They have to go their own way, their own process of healing. I can’t shake her, like, ‘Get back to yourself,’” Erika said. “It could take months, years. Who knows? It could be the rest of her life. But I hope that she can overcome a little bit of it.”

Goose bumps in the sweltering heat

James Lemons noticed a change in his 5-year-old daughter, Kensley, who was on his shoulders when he was shot at the parade. Before the shooting Kensley was outgoing and engaged, James said, but now she is withdrawn, like she has closed off her bubble and disconnected from people.

Large crowds and police officers remind Kensley of the parade. Both were present at a high school graduation the family attended this summer, prompting Kensley to ask repeatedly to leave. James took her to an empty football field, where, he said, she broke out in goose bumps and complained of being cold despite the sweltering heat.

Bedtime is a particular problem for the Lemons family. Kensley has been sleeping with her parents. Another child, 10-year-old Jaxson, has had bad dreams. One night, he dreamt that the shooter was coming near his dad and he tripped him, said Brandie Lemons, Jaxson’s stepmom.

Younger children like Kensley exposed to gun violence are more likely to develop post-traumatic stress disorder than older children, according to Ohio State’s Johnson-Motoyama.

Davis, of Children’s Mercy in Kansas City, said children whose brains are not fully developed can have a hard time sleeping and understanding that they are safe in their homes at night.

James got the family a new puppy — an American bulldog that already weighs 32 pounds — to help them feel protected.

“I looked up the pedigree,” he said, “They’re real protective. They’re real loving.”

Searching for an outlet to let off steam

Gabriella took up boxing after the shooting. Her mother, Bridget, said it restored some of her confidence and control that dimmed after the parade.

“I like beating people up — not in a mean way, I swear,” Gabriella said in April as she molded a mouthguard to her teeth before leaving for training.

She has since stopped boxing, however, so the money can instead go toward a trip to Puerto Rico with her Spanish class. They’re paying $153 a month for 21 months to cover the trip. Boxing classes were $60 a month.

Bridget thought boxing was a good outlet for leftover anger, but by the end of July Gabriella wasn’t sure if she still had the drive to fight back that way.

“The past is the past but we’re still gonna all, like, go through stuff. Does that make sense?” Gabriella asked.

“You’re mostly OK but you still have triggers. Is that what you mean?” her mother asked.

“Yeah,” she replied.

After the shooting, Mireya Nelson tried online classes, which didn’t work well. The first few days of summer school, Mireya had a panic attack every day in the car and her mother took her home.

Mireya wants to return to high school this fall, and Erika is wary.

“You know, if I do go back to school, there’s a chance at school of being shot, because most schools nowadays get shot up,” Erika recalled her daughter saying. “And I’m like, ‘Well, we can’t think like that. You never know what’s gonna happen.’”

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

Unable to work after being shot at the Kansas City Chiefs Super Bowl parade in February, Jacob Gooch Sr. initially received short-term disability payments. But that assistance abruptly stopped in May when he started seeing a new doctor who was in network with his health insurance. The issue was resolved in June and he was expecting back pay soon (Christopher Smith/KFF News).

Abigail Arellano keeps her son Samuel’s medical bills in a blue folder in a cabinet above the microwave. Even now, four months after the 11-year-old was shot at the Kansas City Chiefs Super Bowl parade, the bills keep coming.

There’s one for $1,040 for the ambulance ride to the hospital that February afternoon. Another for $2,841.17 from an emergency room visit they made three days after the shooting because his bullet wound looked infected. More follow-ups and counseling in March added another $1,500.

“I think I’m missing some,” Arellano said as she leafed through the pages.

The Arellanos are uninsured and counting on assistance from the fund that raised nearly $2 million in the aftermath of the shooting that left one dead and at least 24 other people with bullet wounds. She keeps that application in the blue folder as well.

The medical costs incurred by the survivors of the shooting are hitting hard, and they won’t end soon. The average medical spending for someone who is shot increases by nearly $30,000 in the first year, according to a Harvard Medical School study. Another study found that number goes up to $35,000 for children. Ten kids were shot at the parade.

Then there are life’s ordinary bills — rent, utilities, car repairs — that don’t stop just because someone survived a mass shooting, even if their injuries prevent them from working or sending kids to school.

The financial burden that comes with surviving is so common it has a name, according to Aswad Thomas of the nonprofit Alliance for Safety and Justice: victimization debt. Some pay it out-of-pocket. Some open a new credit card. Some find help from generous strangers. Others can’t make ends meet.

“We’re really broke right now,” said Jacob Gooch Sr., another survivor, who was shot through the foot and has not yet been able to return to work.

“We’re, like, exhausting our third credit card.”

As is common after mass shootings, a mosaic of new and established resources emerged in this Missouri city promising help. Those include the #KCStrong fund established by the United Way of Greater Kansas City, which is expected to begin paying victims at the end of June.

Survivors must navigate each opportunity to request help as best they can — and hope money comes through.

GoFundMe, generous strangers and a new line of credit

Mostly, it’s the moms who keep the bills organized. Tucked above the microwave. Zipped inside a purse. Screenshots stored on a phone. And then there’s a maze of paperwork: The Missouri state victims’ compensation form is five pages, including instructions. It’s another six pages for help from the United Way.

Emily Tavis keeps stacks of paperwork with color-coded binder clips in her basement: Black for her partner, Gooch Sr.; blue for her stepson, Jacob Gooch Jr.; pink for herself. All three were shot at the parade.

Tavis was able to walk after a bullet ripped through her leg, and she considered declining the ambulance ride because she was worried about the cost — she lacked insurance at the time.

Gooch Sr. was unable to walk because he’d been shot in the foot. So they shared an ambulance to the hospital with two of their kids.

“I’m not paying for this s—. I didn’t ask for this life,” Tavis, laughing, recalled thinking at the time. They soon realized 14-year-old Gooch Jr. had a bullet in his foot as well.

Tavis and Gooch Sr. received separate $1,145 bills for the ambulance. Gooch Jr. did not, possibly because he has health coverage through Medicaid, Tavis said.

She sends the medical bills to victims’ compensation, a program to help with the economic losses from a crime, such as medical expenses and lost wages. Even though Tavis and Gooch live in Leavenworth, Kansas, their compensation comes from the program in Missouri, where the shooting occurred.

The program pays only for economic losses not covered by other sources like health insurance, donations, and crowdsourced fundraisers. Gooch Sr. and Jr. both had health insurance at the time of the parade, so the family has been sending only the uncovered portion to victims’ compensation.

The family initially received a lot of support. Friends and relatives made sure they had food to eat. The founder of an online group of Kansas City Chiefs fans sent $1,000 and gifts for the family. A GoFundMe page raised $9,500. And their tax refund helped.

They knew money might get tight with Gooch Sr. unable to work, so they paid three months’ rent in advance. They also paid to have his Ford Escape fixed so he could eventually return to work and bought Tavis a used Honda Accord so she could drive to the job she started 12 days after the parade.

And because the donations were intended for the whole family, they decided to buy summer passes to the Worlds of Fun amusement park for the kids.

But recently, they’ve felt stretched. Gooch Sr.’s short-term disability payments abruptly stopped in May when his health insurance prompted him to see an in-network doctor. He said the short-term disability plan initially didn’t approve the paperwork from his new doctor and started an investigation. The issue was resolved in June and he was expecting back pay soon. In the interim, though, the couple opened a new credit card to cover their bills.

In the interim, the couple opened a new credit card to cover their bills.

“We’ve definitely been robbing Peter to pay Paul,” Tavis said.

Ideally, the money that eventually comes from the United Way, victims’ compensation, and, they hope, back pay from short-term disability will be enough to pay off their debts.

But, Tavis said, “You gotta do what you gotta do. We’re not going to go without lights.”

United Way payout expected at end of June

With every mass shooting, donations for survivors inevitably flow in, “just like peanut butter goes with jelly, because people want to help,” said Jeff Dion, executive director of the Mass Violence Survivors Fund, a nonprofit that has helped many communities manage such funds.

Typically, he said, it takes about five months to disburse the money from these large community funds. Victims can potentially get money sooner if their community has a plan in place for these types of funds before a mass shooting. Funds may also advance money to people with urgent financial needs who are certain to qualify.

The United Way hung banners in the Chiefs colors on Kansas City’s Union Station with its #KCStrong campaign within days of the shootings. Driven by large donations from the team, the NFL, quarterback Patrick Mahomes, other individuals, and local companies, it ultimately raised more than $1.8 million.

The promise of a large payout has kept the injured hopeful, even as many felt confused by the process. Some people interviewed for this story did not wish to say anything negative, fearing it would hurt their allocation.

United Way officials announced in April that donations would be closed at the end of that month. On May 1, the organization posted a notice saying it would issue “claimant forms” and that the Jackson County Prosecutor’s Office was helping verify shooting victims. The United Way affiliate’s board of trustees plans to meet June 26 to determine allocations, with payments arriving as early as June 27.

Kera Mashek, a spokesperson for United Way of Greater Kansas City, said payouts will be made to 20 of the 24 shooting survivors. The other four either couldn’t be verified as victims or turned down the funds, she said. Claimants do not include the 67 people prosecutors say were trampled in the melee, she said.

Pending board approval, money will also be disbursed to 14 community groups that support nonviolence initiatives, mental health concerns, and first responders, Mashek said.

To criticism that the United Way didn’t communicate well with the victims, Mashek said it tried to respond in a timely manner.

“We’ve tried to keep that line of communication open as fast as possible and most people have been very patient,” she said. “I think that they will be very grateful and very, I believe, pleasantly surprised with the amount of funding that they receive.”

Other resources available

Abigail Arellano hadn’t heard of victims’ compensation, which is common. A 2022 survey from the Alliance for Safety and Justice found that 96% of victims did not receive that support and many didn’t know it existed.

Arellano and her husband, Antonio, didn’t attend the parade but they’ve had medical expenses as well. Antonio has been going to therapy at a local health center to help with the stressful task of guiding his son through the trauma. It’s been helpful. But he’s been paying around $125 out-of-pocket for each session, he said, and the bills are mounting.

One of Samuel’s sisters set up a GoFundMe that raised $12,500, and Abigail said it helped that the family shared their story publicly and that Abigail reached out to help others in the Latino community affected by the shooting.

It was Abigail, for instance, who connected 71-year-old Sarai Holguin with the Mexican Consulate in Kansas City. The consulate, in turn, helped Holguin register as an official victim of the shooting, which will enable her to receive assistance from the United Way. Holguin’s bills now include a fourth surgery, to remove the bullet lodged near her knee that she had previously made peace with living with forever — until it began protruding through her skin.

‘Generous and quick’ relief to victims

Several survivors were relieved and grateful to receive funds from a less high-profile, nondenominational group called “The Church Loves Kansas City.”

The day after the shooting, Gary Kendall, who ran a Christian nonprofit called “Love KC,” started a text chain at 6 a.m. with city leaders and faith-based groups, and eventually received pledges of $184,500. (Love KC has now merged with another nonprofit, “Unite KC,” which is disbursing its funds.)

The first payout went to the family of Lisa Lopez-Galvan, the 43-year-old mother of two and popular DJ who was the sole fatality during the parade shootings. Unite KC spent $15,000 on her burial expenses.

Unite KC spent $2,800 so James and Brandie Lemons could get their health insurance restored because James couldn’t work. Unite KC also paid $2,200 for the out-of-pocket surgical costs when James decided to get the bullet removed from his leg.

“I appreciate it,” an emotional James Lemons said. “They don’t have to do that, to open their hearts for no reason.”

Erika Nelson was struggling to pay for household expenses and had to take time off from her home health care job to take her injured daughter, 15-year-old Mireya, to doctor appointments. Mireya was shot in the chin and shoulder and is recovering.

A GoFundMe page set up by Nelson’s best friend raised about $11,000, but it was frozen after Nelson tried to get into the account and GoFundMe thought it was being hacked. She feared the lights would be shut off in their apartment, because of unpaid electric bills, and was feeling desperate.

“I’m struggling with, like, you know, groceries,” Nelson said. “People were like, ‘Oh, go to food pantries.’ Well, the food pantries are not open the times I can get off. I can’t just take off work to go to a food pantry.”

After meeting with Gary Kendall, Nelson received three months of rent and utility payments, about $3,500.

“A weight off my shoulder. I mean, yeah. In a big way,” she whispered. “’Cause you never know. You never know what can happen in two days, five days, two weeks, two months.”

Samuel Arellano’s family recently connected with Unite KC, which will pay for his ambulance bill, one of the hospital bills, and some therapy, worth about $6,000. The bill for the initial emergency room trip was about $20,000, his parents said, but the hospital had been reluctant to send it and ultimately covered the cost.

And Unite KC also intends to pay off a $1,300 credit card bill for Emily Tavis and Jacob Gooch Sr.

Unite KC has disbursed $40,000 so far and hopes to connect with more of the injured families, hoping to be as “generous and quick as we can,” Kendall said. United Way will be like a “lightning bolt” for victims’ relief, Kendall said, but his group is aiming for something different, more like a campfire that burns for the next year.

“We agree this is a horrific thing that happened. It’s a sad state of humanity but it’s a real part,” he said. “So we want to remind them that God has not forgotten you. And that although he allowed this, he has not abandoned them. We believe we can be like an extension of his love to these people.”

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

Sarai Holguin (left), Mireya Nelson (top right), and James Lemons (bottom right) all retained a bullet or bullet fragments after being shot at the Chiefs Super Bowl parade in Kansas City in February (Christpher Smith for KFF Health News; Erika Nelson; Brandie Lemons).

James Lemons, 39, wants the bullet removed from his thigh so he can go back to work.

Sarai Holguin, a 71-year-old woman originally from Mexico, has accepted the bullet lodged near her knee as her “compa” — a close friend.

Mireya Nelson, 15, was hit by a bullet that went through her jaw and broke her shoulder, where fragments remain. She’ll live with them for now, while doctors monitor lead levels in her blood for at least two years.

Nearly three months after the Kansas City Chiefs Super Bowl parade shooting left at least 24 people injured, recovery from those wounds is intensely personal and includes a surprising gray area in medicine: whether the bullets should be removed.

Medical protocol offers no clear answer. A 2016 survey of surgeons found that only about 15% of respondents worked at medical facilities that had policies on bullet removal. Doctors in the U.S. often leave bullets buried deep in a person’s body, at least at first, so as not to cause further trauma.

But as gun violence has emerged as a public health epidemic, some researchers wonder if that practice is best. Some of the wounded, like James Lemons, are left in a precarious place.

“If there’s a way to get it out, and it’s safely taken out, get it out of the person,” Lemons said. “Make that person feel more secure about themselves. And you’re not walking around with that memory in you.”

Lemons, Holguin, and Nelson are coping in very different ways.

Pain became a problem

Three days after the Chiefs won the Super Bowl, Lemons drove the 37 miles from Harrisonville, Missouri, to downtown Kansas City to celebrate the victory. The warehouse worker was carrying his 5-year-old daughter, Kensley, on his shoulders when he felt a bullet enter the back of his right thigh.

Gunfire erupted in the area packed with revelers, prosecutors later said, after a “verbal confrontation” between two groups. Detectives found “multiple 9mm and .40 caliber spent shell casings” at the scene. Lemons said he understood immediately what was happening.

“I know my city. We’re not shooting off fireworks,” he said.

Lemons shielded Kensley’s face as they fell to the ground so she wouldn’t hit the concrete. His first thought was getting his family — also including his wife, Brandie; 17-year-old daughter, Kallie; and 10-year-old son, Jaxson — to safety.

“I’m hit. But don’t worry about it,” Lemons recalled telling Brandie. “We gotta go.”

He carried Kensley on his shoulders as the family walked a mile to their car. His leg bled through his pants at first then stopped, he said. It burned with pain. Brandie insisted on driving him to the hospital but traffic was at a standstill so she put on her hazard lights and drove on the wrong side of the road.

“She’s like: ‘I’m getting you to a hospital. I’m tired of people being in my way,’” Lemons recalled. “I’ve never seen my wife like that. I’m looking at her like, ‘That’s kinda sexy.’”

Lemons clapped and smiled at his wife, he said, to which she replied, “What are you smiling for? You just got shot.” He stayed in quiet admiration until they were stopped by a sheriff, who summoned an ambulance, Lemons said.

He was taken to the emergency room at University Health, which admitted 12 patients from the rally, including eight with gunshot wounds. Imaging showed the bullet barely missed an artery, Lemons said. Doctors cleansed the wound, put his leg in a brace, and told him to come back in a week. The bullet was still in his leg.

“I was a little baffled by it, but I was like, ‘OK, whatever, I’ll get out of here,’” Lemons recalled.

When he returned, doctors removed the brace but explained they often leave bullets and fragments in the body — unless they grow too painful.

“I get it, but I don’t like that,” Lemons said. “Why wouldn’t you take it out if you could?”

University Health spokesperson Leslie Carto said the hospital can’t comment on individual patient care because of federal privacy laws.

Surgeons typically do remove bullets when they encounter them during surgery or they are in dangerous locations, like in the spinal canal or risking damage to an organ, said Brendan Campbell, a pediatric surgeon at Connecticut Children’s.

Campbell also chairs the Injury Prevention and Control Committee of the American College of Surgeons’ Committee on Trauma, which works on firearm injury prevention.

LJ Punch, a trauma surgeon by training and the founder of the Bullet Related Injury Clinic in St. Louis, said the origins of trauma care also help explain why bullets are so often left.

“Trauma care is war medicine,” Punch said. “It is set to be ready at any moment and any time, every day, to save a life. It is not equipped to take care of the healing that needs to come after.”

In the survey of surgeons, the most common reasons given for removing a bullet were pain, a palpable bullet lodged near the skin, or an infection. Far less common were lead poisoning and mental health concerns such as post-traumatic stress disorder and anxiety.

What patients wanted also affected their decisions, the surgeons said.

Lemons wanted the bullet out. The pain it caused in his leg radiated up from his thigh, making it difficult to move for more than an hour or two. Working his warehouse job was impossible.

“I gotta lift 100 pounds every night,” Lemons recalled telling his doctors. “I gotta lift my child. I can’t work like this.”

He has lost his income and his health insurance. Another stroke of bad luck: The family’s landlord sold their rental home soon after the parade, and they had to find a new place to live. This house is smaller, but it was important to keep the kids in the same school district with their friends, Lemons said in an interview in Kensley’s pink bedroom, the quietest spot to talk.

They’ve borrowed money and raised $6,500 on GoFundMe to help with the deposit and car repairs, but the parade shooting has left the family in a deep financial hole.

Without insurance, Lemons worried he couldn’t afford to have the bullet removed. Then he learned his surgery would be paid for by donations. He set up an appointment at a hospital north of the city, where a surgeon took measurements on his X-ray and explained the procedure.

“I need you to be involved as much as I’m going to be involved,” he remembered being told, “because — guess what — this ain’t my leg.”

The surgery is scheduled for this month.

‘We became friends’

Sarai Holguin isn’t much of a Chiefs fan, but she agreed to go to the rally at Union Station to show her friend the best spot to see the players on stage. It was an unseasonably warm day, and they were standing near an entrance where lots of police were stationed. Parents had babies in strollers, kids were playing football, and she felt safe.

A little before 2 p.m., Holguin heard what she thought were fireworks. People started running away from the stage. She turned to leave, trying to find her friend, but felt dizzy. She didn’t know she’d been shot. Three people quickly came to her aid and helped her to the ground, and a stranger took off his shirt and made a tourniquet to put on her left leg.

Holguin, a native of Puebla, Mexico, who became a U.S. citizen in 2018, had never seen so much chaos, so many paramedics working under such pressure. They were “anonymous heroes,” she said.

She saw them working on Lisa Lopez-Galvan, a well-known DJ and 43-year-old mother of two. Lopez-Galvan died at the scene, and was the sole fatality at the parade. Holguin was rushed to University Health, about five minutes from Union Station.

There doctors performed surgery, leaving the bullet in her leg. Holguin awoke to more chaos. She had lost her purse, along with her cellphone, so she couldn’t call her husband, Cesar. She had been admitted to the hospital under an alias — a common practice at medical centers to begin immediate care.

Her husband and daughter didn’t find her until about 10 p.m. — roughly eight hours after she’d been shot.

“It has been a huge trauma for me,” Holguin said through an interpreter. “I was injured and at the hospital without doing anything wrong. [The rally] was a moment to play, to relax, to be together.”

Holguin was hospitalized for a week, and two more outpatient surgeries quickly followed, mostly to remove dead tissue around the wound. She wore a wound VAC, or vacuum-assisted closure device, for several weeks and had medical appointments every other day.

Campbell, the trauma surgeon, said wound VACs are common when bullets damage tissue that isn’t easily reconstructed in surgery.

“It’s not just the physical injuries,” Campbell said. “Many times it’s the emotional, psychological injuries, which many of these patients take away as well.”

The bullet remains near Holguin’s knee.

“I’m going to have it for the rest of my life,” she said, saying she and the bullet became “compas,” close friends.

“We became friends so that she doesn’t do any bad to me anymore,” Holguin said with a smile.

Punch, of the Bullet Related Injury Clinic in St. Louis, said some people like Holguin are able to find a way to psychically live with bullets that remain.

“If you’re able to make a story around what that means for that bullet to be in your body, that gives you power; that gives you agency and choice,” Punch said.

Holguin’s life changed in an instant: She’s using a walker to get around. Her foot, she said, acts “like it had a stroke” — it dangles, and it’s difficult to move her toes.

The most frustrating consequence is that she cannot travel to see her 102-year-old father, still in Mexico. She has a live camera feed on her phone to see him, but that doesn’t offer much comfort, she said, and thinking about him brings tears.

She was told at the hospital that her medical bills would be taken care of, but then lots of them came in the mail. She tried to get victim assistance from the state of Missouri, but all the forms she had were in English, which made them difficult to comprehend. Renting the wound VAC alone cost $800 a month.

Finally she heard that the Mexican Consulate in Kansas City could help, and the consul pointed her to the Jackson County Prosecutor’s Office, with which she registered as an official victim. Now all of her bills are being paid, she said.

Holguin isn’t going to seek mental health treatment, as she believes one must learn to live with a given situation or it will become a burden.

“I have processed this new chapter in my life,” Holguin said. “I have never given up and I will move on with God’s help.”

‘I saw blood on my hands’

Mireya Nelson was late to the parade. Her mother, Erika, told her she should leave early, given traffic and the million people expected to crowd into downtown Kansas City, but she and her teenage friends ignored that advice. The Nelsons live in Belton, Missouri, about a half hour south of the city.

Mireya wanted to hold the Super Bowl trophy. When she and her three friends arrived, the parade that had moved through downtown was over and the rally at Union Station had begun. They were stuck in the large crowd and quickly grew bored, Mireya said.

Getting ready to leave, Mireya and one of her friends were trying to call the driver of their group, but they couldn’t get cell service in the large crowd.

Amid the chaos of people and noise, Mireya suddenly fell.

“I saw blood on my hands. So then I knew I got shot. Yeah, and I just crawled to a tree,” Mireya said. “I actually didn’t know where I got shot at, at first. I just saw blood on my hands.”

The bullet grazed Mireya’s chin, shot through her jaw, broke her shoulder, and left through her arm. Bullet fragments remain in her shoulder. Doctors decided to leave them because Mireya had already suffered so much damage.

Mireya’s mother supports that decision, for now, noting they were just “fragments.”

“I think if it’s not going to harm her the rest of her life,” Erika said, “I don’t want her to keep going back in the hospital and getting surgery. That’s more trauma to her and more recovery time, more physical therapy and stuff like that.”

Bullet fragments, particularly ones only skin-deep, often push their way out like splinters, according to Punch, although patients aren’t always told about that. Moreover, Punch said, injuries caused by bullets extend beyond those with damaged tissue to the people around them, like Erika. He called for a holistic approach to recover from all the trauma.

“When people stay in their trauma, that trauma can change them for a lifetime,” Punch said.

Mireya will be tested for lead levels in her blood for at least the next two years. Her levels are fine now, doctors told the family, but if they get worse she will need surgery to remove the fragments, her mother said.

Campbell, the pediatric surgeon, said lead is particularly concerning for young children, whose developing brains make them especially vulnerable to its harmful effects. Even a tiny amount of lead — 3.5 micrograms per deciliter — is enough to report to state health officials, according to the Centers for Disease Control and Prevention.

Mireya talks about cute teenage boys’ being “fine” but also still wears Cookie Monster pajamas. She appears confused by the shootings, by all the attention at home, at school, from reporters. Asked how she feels about the fragments in her arm, she said, “I don’t really care for them.”

Mireya was on antibiotics for 10 days after her hospital stay because doctors feared there was bacteria in the wound. She has had physical therapy, but it’s painful to do the exercises. She has a scar on her chin. “A dent,” she said, that’s “bumpy.”

“They said she was lucky because if she wouldn’t have turned her head in a certain way, she could be gone,” Erika said.

Mireya faces a psychiatric evaluation and therapy appointments, though she doesn’t like to talk about her feelings.

So far, Erika’s insurance is paying the medical bills, though she hopes to get some help from the United Way’s #KCStrong fund, which raised nearly $1.9 million, or a faith-based organization called Unite KC.

Erika doesn’t want a handout. She has a job in health care and just got a promotion.

The bullet has changed the family’s life in big ways. It is part of their conversation now. They talk about how they wish they knew what kind of ammunition it was, or what it looked like.

“Like, I wanted to keep the bullet that went through my arm,” Mireya said. “I want to know what kind of bullet it was.” That brought a sigh from her mom, who said her daughter had watched too many episodes of “Forensic Files.”

Erika beats herself up about the wound, because she couldn’t protect her daughter at the parade.

“It hits me hard because I feel bad because she begged me to get off work and I didn’t go there because when you have a new position, you can’t just take off work,” Erika said. “Because I would have took the bullet. Because I would do anything. It’s mom mode.”

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

The Barton family is not included in the official tally of 24 injured survivors of a mass shooting at the Kansas City Chiefs Super Bowl parade in February. But Jason Barton; his wife, Bridget; and her 13-year-old daughter, Gabriella, are still reeling from their roles at its epicenter (Christopher Smith/KFF Health News).

Jason Barton didn’t want to attend the Super Bowl parade this year. He told a co-worker the night before that he worried about a mass shooting. But it was Valentine’s Day, his wife is a Kansas City Chiefs superfan, and he couldn’t afford to take her to games since ticket prices soared after the team won the championship in 2020.

So Barton drove 50 miles from Osawatomie, Kansas, to downtown Kansas City with his wife, Bridget, her 13-year-old daughter, Gabriella, and Gabriella’s school friend. When they finally arrived home that night, they cleaned blood from Gabriella’s sneakers and found a bullet in Bridget’s backpack.

Gabriella’s legs were burned by sparks from a ricocheted bullet, Bridget was trampled while shielding Gabriella in the chaos and Jason gave chest compressions to a man injured by gunfire. He believes it was Lyndell Mays, one of two men charged with second-degree felony murder.

“There’s never going to be a Valentine’s Day where I look back and I don’t think about it,” Gabriella said, “because that’s a day where we’re supposed to have fun and appreciate the people that we have.”

One month after the parade in which the U.S. public health crisis that is gun violence played out on live television, the Bartons are reeling from their role at its epicenter. They were just feet from 43-year-old Lisa Lopez-Galvan, who was killed. Twenty-four other people were injured.

Although the Bartons aren’t included in that official victim number, they were traumatized, physically and emotionally, and pain permeates their lives: Bridget and Jason keep canceling plans to go out, opting instead to stay home together; Gabriella plans to join a boxing club instead of the dance team.

During this first month, Kansas City community leaders have weighed how to care for people caught in the bloody crossfire and how to divide more than $2 million donated to public funds for victims in the initial outpouring of grief.

The questions are far-reaching: How does a city compensate people for medical bills, recovery treatments, counseling, and lost wages? And what about those who have PTSD-like symptoms that could last years? How does a community identify and care for victims often overlooked in the first flush of reporting on a mass shooting: the injured?

The injured list could grow. Prosecutors and Kansas City police are mounting a legal case against four of the shooting suspects, and are encouraging additional victims to come forward.

“Specifically, we’re looking for individuals who suffered wounds from their trying to escape. A stampede occurred while people were trying to flee,” said Jackson County Prosecutor Jean Peters Baker. Anyone who “in the fleeing of this event that maybe fell down, you were trampled, you sprained an ankle, you broke a bone.”

Meanwhile, people who took charge of raising money and providing services to care for the injured are wrestling with who gets the money — and who doesn’t. Due to large donations from celebrities like Taylor Swift and Travis Kelce, some victims or their families will have access to hundreds of thousands of dollars for medical expenses. Other victims may simply have their counseling covered.

The overall economic cost of U.S. firearm injuries is estimated by a recent Harvard Medical School study at $557 billion annually. Most of that — 88% — represented quality-of-life losses among those injured by firearms and their families. The JAMA-published study found that each nonfatal firearm injury leads to roughly $30,000 in direct health care spending per survivor in the first year alone.

In the immediate aftermath of the shootings, as well-intentioned GoFundMe pages popped up to help victims, executives at United Way of Greater Kansas City gathered to devise a collective donation response. They came up with “three concentric circles of victims,” said Jessica Blubaugh, the United Way’s chief philanthropy officer, and launched the #KCStrong campaign.

“There were folks that were obviously directly impacted by gunfire. Then the next circle out is folks that were impacted, not necessarily by gunshots, but by physical impact. So maybe they were trampled and maybe they tore a ligament or something because they were running away,” Blubaugh said. “Then third is folks that were just adjacent and/or bystanders that have a lot of trauma from all of this.”

PTSD, panic, and the echo of gunfire

Bridget Barton returned to Kansas City the day after the shooting to turn in the bullet she found in her backpack and to give a statement at police headquarters. Unbeknownst to her, Mayor Quinton Lucas and the police and fire chiefs had just finished a press conference outside the building. She was mobbed by the media assembled there — interviews that are now a blur.

“I don’t know how you guys do this every day,” she remembered telling a detective once she finally got inside.

The Bartons have been overwhelmed by well wishes from close friends and family as they navigate the trauma, almost to the point of exhaustion. Bridget took to social media to explain she wasn’t ignoring the messages, she’s just responding as she feels able — some days she can hardly look at her phone, she said.

A family friend bought new Barbie blankets for Gabriella and her friend after the ones they brought to the parade were lost or ruined. Bridget tried replacing the blankets herself at her local Walmart, but when she was bumped accidentally, it triggered a panic attack. She abandoned her cart and drove home.

“I’m trying to get my anxiety under control,” Bridget said.

That means therapy. Before the parade, she was already seeing a therapist and planning to begin eye movement desensitization and reprocessing, a form of therapy associated with treating post-traumatic stress disorder. Now the shooting is the first thing she wants to talk about in therapy.

Since Gabriella, an eighth grader, has returned to middle school, she has dealt with the compounding immaturity of adolescence: peers telling her to get over it, pointing finger guns at her, or even saying it should have been her who was shot. But her friends are checking on her and asking how she’s doing. She wishes more people would do the same for her friend, who took off running when the shooting started and avoided injury. Gabriella feels guilty about bringing her to what turned into a horrifying experience.

“We can tell her all day long, ‘It wasn’t your fault. She’s not your responsibility.’ Just like I can tell myself, ‘It wasn’t my fault or my responsibility,’” Bridget said. “But I still bawled on her mom’s shoulder telling her how sorry I was that I grabbed my kid first.”

The two girls have spent a lot of time talking since the shooting, which Gabriella said helps with her own stress. So does spending time with her dog and her lizard, putting on makeup, and listening to music — Tech N9ne’s performance was a highlight of the Super Bowl celebration for her.

In addition to the spark burns on Gabriella’s legs, when she fell to the concrete in the pandemonium she split open a burn wound on her stomach previously caused by a styling iron.

“When I see that, I just picture my mom trying to protect me and seeing everyone run,” Gabriella said of the wound.

It’s hard not to feel forgotten by the public, Bridget said. The shooting, especially its survivors, have largely faded from the headlines aside from court dates. Two additional high-profile shootings have occurred in the area since the parade. Doesn’t the community care, she wonders, that her family is still living with the fallout every day?

“I’m going to put this as plainly as possible. I’m f—ing pissed because my family went through something traumatic,” Bridget vented in a recent social media post. “I don’t really want anything other [than], ‘Your story matters, too, and we want to know how you’re doing.’ Have we gotten that? Abso-f—lutely not.”

‘What is the landscape of need?’

Helped in part by celebrities like Swift and Kelce, donations for the family of Lopez-Galvan, the lone fatality, and other victims poured in immediately after the shootings. Swift and Kelce donated $100,000 each. With the help of an initial $200,000 donation from the Kansas City Chiefs, the United Way’s #KCStrong campaign took off, reaching $1 million in the first two weeks and sitting at $1.2 million now.

Six verified GoFundMe funds were established. One solely for the Lopez-Galvan family has collected over $406,000. Smaller ones were started by a local college student and Swift fans. Churches have also stepped up, and one local coalition had raised $183,000, money set aside for Lopez-Galvan’s funeral, counseling services for five victims, and other medical bills from Children’s Mercy Kansas City hospital, said Ray Jarrett, executive director of Unite KC.

Meanwhile, those leading the efforts found models in other cities. The United Way’s Blubaugh called counterparts who’d responded to their own mass shootings in Orlando, Florida; Buffalo, New York; and Newtown, Connecticut.

“The unfortunate reality is we have a cadre of communities across the country who have already faced tragedies like this,” Blubaugh said. “So there is an unfortunate protocol that is, sort of, already in place.”

#KCStrong monies could start being paid out by the end of March, Blubaugh said. Hundreds of people called the nonprofit’s 211 line, and the United Way is consulting with hospitals and law enforcement to verify victims and then offer services they may need, she said.

The range of needs is staggering — several people are still recovering at home, some are seeking counseling, and many weren’t even counted in the beginning. For instance, a plainclothes police officer was injured in the melee but is doing fine now, said Police Chief Stacey Graves.

Determining who is eligible for assistance was one of the first conversations United Way officials had when creating the fund. They prioritized three areas of focus: first were the wounded victims and their families, second was collaborating with organizations already helping victims in violence intervention and prevention and mental health services, and third were the first responders.

Specifically, the funds will be steered to cover medical bills, or lost wages for those who haven’t been able to work since the shootings, Blubaugh said. The goal is to work quickly to help people, she said, but also to spend the money in a judicious, strategic way.

“We don’t have a clear sightline of the entire landscape that we’re dealing with,” Blubaugh said. “Not only of how much money do we have to work with, but also, what is the landscape of need? And we need both of those things to be able to make those decisions.”

Firsthand experience of daily Kansas City violence

Jason used his lone remaining sick day to stay home with Bridget and Gabriella. An overnight automation technician, he is the family’s primary breadwinner.

“I can’t take off work, you know?” he said. “It happened. It sucked. But it’s time to move on.”

“He’s a guy’s guy,” Bridget interjected.

On Jason’s first night back at work, the sudden sound of falling dishes startled Bridget and Gabriella, sending them into each other’s arms crying.

“It’s just those moments of flashbacks that are kicking our butts,” Bridget said.

In a way, the shooting has brought the family closer. They’ve been through a lot recently. Jason survived a heart attack and cancer last year. Raising a teenager is never easy.

Bridget can appreciate that the bullet lodged in her backpack, narrowly missing her, and that Gabriella’s legs were burned by sparks but she wasn’t shot.

Jason is grateful for another reason: It wasn’t a terrorist attack, as he initially feared. Instead, it fits into the type of gun violence he’d become accustomed to growing up in Kansas City, which recorded its deadliest year last year, although he’d never been this close to it before.

“This crap happens every single day,” he said. “The only difference is we were here for it.”

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

The day after Missouri Attorney General Andrew Bailey sought to limit access to gender-affirming health care for transgender people of all ages this spring, Hal Dempsey launched a GoFundMe fundraiser for themself and their two partners to leave Springfield, Missouri. While Bailey withdrew his measure after the state legislature passed a more limited crackdown on care for minors, the three transgender partners moved at the end of May to Illinois, which requires state-regulated insurance plans to cover such care at no extra cost. (Bruce E. Stidham for KFF Health News)

Hal Dempsey wanted to “escape Missouri.” Arlo Dennis is “fleeing Florida.” The Tillison family “can’t stay in Texas.”

They are part of a new migration of Americans who are uprooting their lives in response to a raft of legislation across the country restricting health care for transgender people.

Missouri, Florida, and Texas are among at least 20 states that have limited components of gender-affirming health care for trans youth. Those three states are also among the states that prevent Medicaid — the public health insurance for people with low incomes — from paying for key aspects of such care for patients of all ages.

More than a quarter of trans adults surveyed by KFF and The Washington Post late last year said they had moved to a different neighborhood, city, or state to find more acceptance. Now, new restrictions on health care and the possibility of more in the future provide additional motivation.

Many are heading to places that are passing laws to support care for trans people, making those states appealing sanctuaries. California, for example, passed a law last fall to protect those receiving or providing gender-affirming care from prosecution. And now, California providers are getting more calls from people seeking to relocate there to prevent disruptions to their care, said Scott Nass, a family physician and expert on transgender care based in the state.

But the influx of patients presents a challenge, Nass said, “because the system that exists, it can’t handle all the refugees that potentially are out there.”

In Florida, the legislative targeting of trans people and their health care has persuaded Arlo Dennis, 35, that it is time to uproot their family of five from the Orlando area, where they’ve lived for more than a decade. They plan to move to Maryland.

Dennis, who uses they/them pronouns, no longer has access to hormone replacement therapy after Florida’s Medicaid program stopped covering transition-related care in late August under the claim that the treatments are experimental and lack evidence of being effective. Dennis said they ran out of their medication in January.

“It’s definitely led to my mental health having struggles and my physical health having struggles,” Dennis said.

Moving to Maryland will take resources Dennis said their family does not have. They launched a GoFundMe campaign in April and have raised more than $5,600, most of it from strangers, Dennis said. Now the family, which includes three adults and two children, plans to leave Florida in July. The decision wasn’t easy, Dennis said, but they felt like they had no choice.

“I’m OK if my neighbor doesn’t agree with how I’m living my life,” Dennis said. “But this was literally outlawing my existence and making my access to health care impossible.”

Mitch and Tiffany Tillison decided they needed to leave Texas after the state’s Republicans made anti-trans policies for youth central to their legislative agenda. Their 12-year-old came out as trans about two years ago. They asked for only her middle name, Rebecca, to be published because they fear for her safety due to threats of violence against trans people.

This year, the Texas Legislature passed a law limiting gender-affirming health care for youth under 18. It specifically bans physical care, but local LGBTQ+ advocates say recent crackdowns also have had a chilling effect on the availability of mental health therapy for trans people.

While the Tillisons declined to specify what treatment, if any, their daughter is getting, they said they reserve the right, as her parents, to provide the care their daughter needs — and that Texas has taken away that right. That, plus increasing threats of violence in their community, particularly in the wake of the May 6 mass shooting by a professed neo-Nazi at Allen Premium Outlets, about 20 miles from their home in the Dallas suburbs, caused the family to decide to move to Washington state.

“I’ve kept her safe,” said Tiffany Tillison, adding that she often thinks back to the moment her daughter came out to her during a long, late drive home from a daylong soccer tournament. “It’s my job to continue to keep her safe. My love is unending, unconditional.”

For her part, Rebecca is pragmatic about the move planned for July: “It’s sad, but it is what we have to do,” she said.

A close call on losing key medical care in Missouri also pushed some trans people to rethink living there. In April, Missouri Attorney General Andrew Bailey issued an emergency rule seeking to limit access to transition-related surgery and cross-sex hormones for all ages, and restrict puberty-blocking drugs, which pause puberty but don’t alter gender characteristics. The next day, Dempsey, 24, who uses they/them pronouns, launched a GoFundMe fundraiser for themself and their two partners to leave Springfield, Missouri.

“We are three trans individuals who all depend on the Hormone Replacement Therapy and gender affirming care that is soon to be prohibitively limited,” Dempsey wrote in the fundraising appeal, adding they wanted to “escape Missouri when our lease is up at the end of May.”

Dempsey said they also got a prescription for a three-month supply of hormone therapy from their doctor in Springfield to tide them over until the move.

Bailey withdrew his rule after the state legislature in May restricted new access to such treatments for minors, but not adults like Dempsey and their partners. Still, Dempsey said their futures in Missouri didn’t look promising.

Neighboring Illinois was an obvious place to move; the legislature there passed a law in January that requires state-regulated insurance plans to cover gender-affirming health care at no extra cost. Where exactly was a bigger question. Chicago and its suburbs seemed too expensive. The partners wanted a progressive community similar in size and cost of living to the city they were leaving. They were looking for a Springfield in Illinois.

“But not Springfield, Illinois,” Dempsey quipped.

Gwendolyn Schwarz, 23, had also hoped to stay in Springfield, Missouri, her hometown, where she had recently graduated from Missouri State University with a degree in film and media studies. She had planned to continue her education in a graduate program at the university and, within the next year, get transition-related surgery, which can take a few months of recovery.

But her plans changed as Bailey’s rule stirred fear and confusion.

“I don’t want to be stuck and temporarily disabled in a state that doesn’t see my humanity,” Schwarz said.

She and a group of friends are planning to move west to Nevada, where state lawmakers have approved a measure that requires Medicaid to cover gender-affirming treatment for trans patients.

Schwarz said she hopes moving from Missouri to Nevada’s capital, Carson City, will allow her to continue living her life without fear and eventually get the surgery she wants.

Dempsey and their partners settled on Moline, Illinois, as the place to move. All three had to quit their jobs to relocate, but they have raised $3,000 on GoFundMe, more than enough to put a deposit down on an apartment.

On May 31, the partners packed the belongings they hadn’t sold and made the 400-mile drive to their new home.

Since then, Dempsey has already been able to see a medical provider at a clinic in Moline that caters to the LGBTQ+ community — and has gotten a new prescription for hormone therapy.

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

(Oona Tempest/KFF Health News)

CLAYTON, Mo. — Kaitlyn Anderson was six months pregnant when a driver killed her and a Missouri Department of Transportation colleague in 2021 while they were doing roadwork near St. Louis. Her fetus also died.

Although Anderson’s family tried to sue the department on her behalf, workers’ compensation laws in Missouri and elsewhere shield employers from wrongful death lawsuits when an employee dies on the job. So the case was also filed on behalf of the 25-year-old woman’s unborn child, a son named Jaxx. This was possible because Missouri law defines life — and legal rights — as beginning at conception.

In turn, the lawyers representing the state argued that, since Jaxx was considered a person, his case should be dismissed because under workers’ compensation laws he met the definition of an employee.

“That’s just disgusting,” said Tonya Musskopf, Anderson’s mother. “Who would have known what he would have grown into? His whole life was ahead of him.”

What wasn’t in question from either side was the idea that the 6-month-old fetus had legal rights under Missouri law. Every state has at least some statute or case law that considers a fetus a person, according to a report from Pregnancy Justice, a nonprofit that advocates for the rights of pregnant people. The report lists Missouri among at least 10 states with personhood language that is so broad it could be interpreted to apply to all civil and criminal laws.

Around the country, state personhood definitions have often been restrained by laws protecting the right to abortions, according to Pregnancy Justice acting executive director Dana Sussman, because together they create an inherent inconsistency: How could a fetus be a person if abortion is legal? But now that abortion rights are no longer federally protected, personhood definitions could expand throughout state law.

“States have more leverage and leeway to tread in these waters,” said John Seago, president of Texas Right to Life, a group that opposes abortion.

The U.S. Supreme Court’s 1973 decision in Roe v. Wade, which protected abortion rights, stated that the word “person” did not include the unborn for the purposes of individual rights such as equal protection under the law. The ruling prompted a nationwide push to grant more rights to fetuses, according to Laura Hermer, a visiting professor at St. Louis University School of Law.

Among states, Missouri’s recognition of personhood for fetuses was early and consequential.

Here, a 1986 law to regulate abortion included a preamble that defined life as beginning at conception. Three years later, the U.S. Supreme Court ruled Missouri’s definition could stand since it was merely a “value judgment.” A Missouri Supreme Court ruling in 1995 opened the door for the definition to apply to all Missouri statutes.

Still, Sussman noted, Missouri courts have not applied personhood to every state statute.

In 2018, a Missouri man unsuccessfully attempted to appeal his conviction for child molestation by arguing the state’s personhood language required the court to calculate the age of the victim from conception, not birth, which would have made her above the statutory age limit. Sussman said it’s an example of how the limits of broad personhood language are tested.

“People will start to utilize that and figure out ways to have it benefit their particular circumstances,” Sussman said.

That type of boundary-pushing, Sussman said, is invited by inconsistencies in the law, like those created by the U.S. Supreme Court’s Dobbs decision last summer, which overturned Roe v. Wade without addressing the question of when personhood rights begin.

The Dobbs ruling gives states the power to regulate abortion, and in Texas it triggered an abortion law that defines an unborn child as an “individual living member of the homo sapiens species from fertilization until birth.” Just days later, a Texas woman was given a ticket for driving in the carpool lane despite arguing that her unborn daughter counted as a second person in the vehicle.

“One law is saying that this is a baby and now he’s telling me this baby that’s jabbing my ribs is not a baby,” she said of the officer who gave her the ticket. That ticket and a second one she got for a similar incident the next month were ultimately dismissed.

Another legal boundary was pushed in early April when a U.S. District Judge in Texas ruled that the FDA had improperly approved the common abortion drug mifepristone. The judge noted that part of the ruling’s analysis “arguably applies to the unborn humans extinguished by mifepristone — especially in the post-Dobbs era.” The Supreme Court has blocked the ruling, for now.

Seago said these kinds of legal tests are important.

“That’s the phase that we’re at after undoing a court precedent that had been there for almost 50 years,” Seago said. “We’re encouraged that it’s forcing these important questions, like, ‘What do we owe our unborn neighbors?’”

But Sussman worries about an increase in criminal charges filed against pregnant people. Pregnancy Justice filed a brief in a 2021 court case challenging an Arizona law that granted personhood rights to unborn children “at every stage of development.”

Citing Missouri as a cautionary tale, the brief asserts not a single woman was arrested in the state in relation to her pregnancy before the Supreme Court allowed Missouri’s personhood language to stand. The years that followed, however, brought at least 39 arrests of women “for being pregnant and subjecting ‘unborn children’ to perceived risks of harm including drinking alcohol, smoking marijuana, or drinking tea made with mint and marijuana leaves to treat morning sickness.”

The Arizona law was blocked, at least temporarily.

Texas’ new abortion case law has yet to play out, but Seago anticipated it would follow the pattern established for child abuse, in which the accused can defend themselves by establishing they didn’t intend to cause harm.

“There’s no accidental abortion in Texas,” Seago said.

In Missouri, wrongful death claims for unborn children have been allowed since the 1995 state Supreme Court ruling.

Anderson’s family filed a wrongful death lawsuit in St. Louis County in 2022 against the driver, the Missouri Highways and Transportation Commission — which governs the Department of Transportation — and several of Anderson’s supervisors.

The state’s attorneys argued that Jaxx, like his mother, met the definition of an “employee” under Missouri workers’ compensation law, which includes an employee’s dependents in the event the employee is dead. Because Jaxx’s rights under Missouri law began at his conception, the filing read, he should be considered Anderson’s dependent. That would prevent a wrongful death suit brought against the Department of Transportation on Jaxx’s behalf.

“Who the hell would argue that someone who hasn’t been born works for them and is a dependent?” said Andrew Mundwiller, the attorney representing Anderson’s family. “I would say it stretches the bounds of the law.”

Theresa Otto, an attorney representing the Department of Transportation, declined to comment about the case, saying the department does not comment on active litigation.

St. Louis University School of Law professor Michael Duff, who has written a book on workers’ compensation law, said this type of case was, “thankfully,” rare. But he did find nine cases nationwide since 1985 that examined whether workers’ compensation laws barred suits against companies for injuries sustained in utero. In each case, the answer was no and the lawsuit continued.

On March 29, Judge Joseph Dueker, who was assigned the case in St. Louis County Circuit Court in Clayton, issued a similar ruling in Jaxx’s case, writing that barring Jaxx’s claims would lead to an “extremely absurd result.” A trial is set for March 2024.

Sussman, of Pregnancy Justice, said broad personhood language would allow legal boundaries to be pushed until state legislatures act to clarify the laws.

The case in Missouri prompted the introduction of a bill in the state legislature, dubbed “Jaxx’s Law,” that would bar unborn children from being considered employees in any civil actions, including wrongful death lawsuits.

But they would still be considered people with legal rights.

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A nurse enters a room wearing full PPE in the COVID-19 unit at University Hospital in Columbia (Justin Kelley/MU Health Care).

To crack down on price gouging, proposed legislation in Missouri calls for allowing felony charges against health care staffing agencies that substantially raise their prices during a declared emergency.

A New York bill includes a cap on the amount staffing agencies can charge health care facilities. And a Texas measure would allow civil penalties against such agencies.

These proposed regulations — and others in at least 11 more states, according to the American Staffing Association industry trade group — come after demand for travel nurses, who work temporary assignments at different facilities, surged to unprecedented levels during the worst of the covid-19 pandemic.

Hospitals have long used temporary workers, who are often employed by third-party agencies, to help fill their staffing needs. But by December 2021, the average weekly travel nurse pay in the country had soared to $3,782, up from $1,896 in January 2020, according to a Becker’s Hospital Review analysis of data from hiring platform Vivian Health. That platform alone listed over 645,000 active travel nurse jobs in the final three months of 2022.

Some traveling intensive care unit nurses commanded $10,000 a week during the worst of the pandemic, prompting burned-out nurses across the country to leave their hospital staff jobs for more lucrative temporary assignments. Desperate hospitals that could afford it offered signing bonuses as high as $40,000 for nurses willing to make multiyear commitments to join their staff instead.

The escalating costs led hospitals and their allies around the country to rally against what they saw as price gouging by staffing agencies. In February 2021, the American Hospital Association urged the Federal Trade Commission to investigate “anticompetitive pricing” by agencies, and, a year later, hundreds of lawmakers urged the White House to do the same.

No substantial federal action has occurred, so states are trying to take the next step. But the resulting regulatory patchwork could pose a different challenge to hospitals in states with rate caps or other restrictive measures, according to Hannah Neprash, a University of Minnesota health care economics professor. Such facilities could find it difficult to hire travel nurses or could face a lower-quality hiring pool during a national crisis than those in neighboring states without such measures, she said.

For example, Massachusetts and Minnesota already had rate caps for temporary nurses before the pandemic but raised and even waived their caps for some staffing agencies during the crisis.

And any new restrictions may meet stiff resistance, as proposed rate caps did in Missouri last year.

As the covid omicron variant wave began to subside, Missouri legislators considered a proposal that would have set the maximum rate staffing agencies could charge at 150% of the average wage rate of the prior three years plus necessary taxes.

The Missouri Hospital Association, a trade group that represents 140 hospitals across the state, supported the bill as a crackdown on underhanded staffing firms, not on nurses being able to command higher wages, spokesperson Dave Dillon said.

“During the pandemic there were staffing companies who were making a lot of promises and not necessarily delivering,” Dillon said. “It created an opportunity for both profiteering and for bad actors to be able to play in that space.”

Nurses, though, decried what they called government overreach and argued the bill could make the state’s existing nursing shortage worse.

Theresa Newbanks, a nurse practitioner, asked legislators to imagine the government attempting to dictate how much a lawyer, electrician, or plumber could make in Missouri. “This would never be allowed,” she testified to the committee considering the bill. “Yet, this is exactly what is happening, right now, to nurses.”

Another of the nearly 30 people who testified against the bill was Michelle Hall, a longtime nurse and hospital nursing leader who started her own staffing agency in 2021, in part, she said, because she was tired of seeing her peers leave the industry over concerns about unsafe staffing ratios and low pay.

“I felt like I had to defend my nurses,” Hall later told KHN. Her nurses usually receive about 80% of the amount she charges, she said.

Typically about 75% of the price charged by a staffing agency to a health care facility goes to costs such as salary, payroll taxes, workers’ compensation programs, unemployment insurance, recruiting, training, certification, and credential verification, said Toby Malara, a vice president at the American Staffing Association trade group.

He said hospital executives have, “without understanding how a staffing firm works,” wrongly assumed price gouging has been occurring. In fact, he said many of his trade group’s members reported decreased profits during the pandemic because of the high compensation nurses were able to command.

While Missouri lawmakers did not pass the rate cap, they did make changes to the regulations governing staffing agencies, including requiring them to report the average amounts charged per health care worker for each personnel category and the average amount paid to those workers. Those reports will not be public, although the state will use them to prepare its own aggregate reports that don’t identify individual agencies. The public comment period on the proposed regulations was scheduled to begin March 15.

Hall was not concerned about the reporting requirements but said another of the changes might prompt her to close shop or move her business out of state: Agencies will be barred from collecting compensation when their employees get recruited to work for the facility where they temp.

“It doesn’t matter all the money that I have put out prior, to onboard and train that person,” Hall said.

Dillon called that complaint “pretty rich,” noting that agencies routinely recruit hospital staff members by offering higher pay. “Considering the premium agencies charge for staff, I find it hard to believe that this risk isn’t built into their business model,” he said.

Of course, as the pandemic has waned, the demand for travel nursing has subsided. But pay has yet to drop back to pre-pandemic levels. Average weekly travel nurse pay was $3,077 in January, down 20% year over year but still 62% higher in January 2020, according to reporting on Vivian Health data by Becker’s.

With the acute challenges of the pandemic behind hospitals, Dillon said, health system leaders are eyeing proactive solutions to meet their ongoing workforce challenges, such as raising pay and investing in the nursing workforce pipeline.

A hospital in South Carolina, for example, is offering day care for staffers’ children to help retain them. California lawmakers are considering a $25-per-hour minimum wage for health care workers. And some hospitals have even created their own staffing agencies to reduce their reliance on third-party agencies.

But the momentum to directly address high travel nurse rates hasn’t gone away, as evidenced by the legislative push in Missouri this year.

The latest proposal would apply to certain agencies if a “gross disparity” exists between the prices they charge during an emergency and what they charged prior to it or what other agencies are currently charging for similar services and if their earnings are at least 15% higher than before the emergency.

Malara said he doesn’t have much of a problem with this year’s bill because it gives agencies the ability to defend their practices and pricing.

Kentucky last year applied its existing price gouging rules to health care staffing agencies. The rules, which set criteria for acceptable prices, allow increases driven by higher labor costs. Malara said if the Missouri bill gains momentum he will point its sponsor to that language and ask her to clarify what constitutes a “gross disparity” in prices.

The sponsor of the bill, Missouri state Sen. Karla Eslinger, a Republican, did not respond to requests for comment on the legislation.

Hall said she is opposed to any rate caps but is ambivalent about Missouri’s new proposal. She said she saw agencies raising their prices from $70 an hour to over $300 while she worked as a hospital nursing leader at the height of the pandemic.

“All these agencies that were price gouging,” Hall said, “all they were doing was putting that money in their own pockets. They weren’t doing anything different or special for their nurses.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Stacy Whitford, of suburban Kansas City applied for Medicaid for herself and her son in December. She spent hours on the phone trying to sort out the status of their applications before they were finally approved more than 100 days later on March 31, 2022 (Christopher Smith/KHN).

This story was originally published by Kaiser Health News. 

Korra Elliott has tried to avoid seeing a doctor while waiting to get on Medicaid. She worries she can’t afford more bills without any insurance coverage. But in early March — five months, she said, after applying and with still no decision about her application — a suspected case of the flu sent her blood pressure soaring and landed her in the emergency room.

The 28-year-old mother of four from Salem, Missouri, is among the tens of thousands of uninsured Missourians stuck waiting as the state slogs through a flood of applications for the state-federal health insurance program. Missouri expanded the program last year after a lengthy legal and political battle, and it now covers adults who earn up to 138% of the federal poverty level — about $18,800 annually for an individual.

Missouri had nearly 72,000 pending Medicaid applications at the end of February and was averaging 119 days to process one, more than twice the maximum turnaround time of 45 days allowed by federal rules. Adding people to Medicaid is labor-intensive, and the jobs require training and expertise. The program covers many populations — children, people with disabilities, seniors, adults who are pregnant or have children, and some without children. Different rules dictate who qualifies.

Missouri simply doesn’t have the workers to keep up. Last fiscal year, 20% of its employees who handled Medicaid applications left their jobs, said Heather Dolce, a spokesperson for the Missouri Department of Social Services. And the average number of job applications received for each opening in the department’s Family Support Division — which oversees enrollment — dropped from 47 in March 2021 to 10 in February 2022.

Just about every industry is struggling to find workers now, but staffing shortages in state Medicaid agencies around the country come at a challenging time. States will soon need to review the eligibility of tens of millions of people enrolled in the program nationwide — a herculean effort that will kick off once President Joe Biden’s administration lets the covid-19 public health emergency declaration expire. If Missouri’s lengthy application backlogs are any indication, the nation is on course for a mass-scale disruption in people’s benefits — even for those who still qualify for the insurance.

“If you don’t have people actually processing the cases and answering the phone, it doesn’t matter what policies you have in place,” said Jennifer Wagner, director of Medicaid eligibility and enrollment for the Center on Budget and Policy Priorities, a left-leaning think tank in Washington, D.C.

Federal officials have said they will give states 60 days’ notice before ending the public health emergency, so it’s unlikely to expire before summer. Once it does, enrollees won’t be kicked off immediately: States can take up to 14 months to complete renewals, although budget pressures may push many to move faster. A bump in federal Medicaid funds to states, provided by Congress through covid relief legislation in 2020, will end shortly after the emergency’s expiration.

Ultimately, workers are needed to answer questions, process information confirming someone’s Medicaid enrollment should be renewed, or see whether the person qualifies for a different health coverage program — all before the benefits lapse and they become uninsured.

State Medicaid officials have said staffing is one of the top challenges they face. In a January meeting of the Medicaid and CHIP Payment and Access Commission, an outside panel of experts that advises Congress, Jeff Nelson said 15% to 20% of the Utah Department of Health’s eligibility workers were new. “We’ve got a fifth of the workforce that potentially doesn’t know what they’re doing,” said Nelson, who oversees eligibility for Utah’s Medicaid program.

Eligibility worker vacancies at the Texas Health and Human Services Commission quadrupled over roughly two years — 1,031 open positions as of late February compared with 260 as of March 31, 2020, according to spokesperson Kelli Weldon.

Medicaid renewals are less labor-intensive than initial applications, but it takes time before an eligibility worker knows the ins and outs of the program, Wagner said.

“It’s months before you are fully functional,” said Wagner, who previously oversaw the Illinois Department of Human Services’ offices that determine applicants’ eligibility for Medicaid, the Supplemental Nutrition Assistance Program that provides food stamps, and other assistance programs.

Other social services may be gummed up in the process because many workers also handle applications for other programs. In addition to Medicaid, workers for Kentucky’s Department for Community Based Services handle SNAP and child care assistance applications.

Consumer advocates who connect people to safety-net programs worry that an overwhelmed workforce won’t be able to keep up.

“It’s going to be a lot of work for everyone,” said Miranda Brown, who helps people apply for benefits as outreach coordinator for the Kentucky Equal Justice Center, a legal aid group.

Brown said she recently called a state office on behalf of a client toward the end of the day. She waited on hold for an hour only to be told by a caseworker that the agency couldn’t process any more cases that day.

“I even have a [phone] line that I get through faster than a consumer calling for themselves,” she said. “If it’s hard for me, it’s very hard for consumers who are trying to call on their lunch break at work.”

South Carolina planned to hire “a couple hundred workers” beginning this spring to help manage renewals at the end of the public health emergency, said Nicole Mitchell Threatt, deputy director of eligibility, enrollment, and member services at the Department of Health and Human Services. The turnover rate among eligibility workers was about 25% from July 2020 to June 2021, jumping from a 15% rate in the previous 12 months.

In Missouri, Dolce said her department hopes a recently approved pay increase will help recruit more workers and improve staff morale and retention. The department is being sued over delays in enrollments for SNAP benefits, which it also oversees.

Kim Evans, director of the Missouri Department of Social Services’ Family Support Division, told the state Medicaid oversight committee in February that her division was offering overtime and she was even offering to buy pizza to speed up the processing of applications. But the department is enrolling fewer than 3,000 people per week, leaving tens of thousands waiting and delaying their care.

In the suburbs of Kansas City, Missouri, Stacey Whitford, 41, applied in December for Medicaid for herself and her 13-year-old son. Her son needs hearing aids that she said cost $2,500 apiece without insurance. She also lined up a support worker for the boy, who has autism, through the Department of Mental Health but said she was told the worker can begin only once her son is enrolled in Medicaid.

“It’s just like hanging a golden ticket right in front of your face and saying, ‘Here it is, but you can’t touch it,’” she said in early March.

Whitford spent hours on the phone trying to sort out the status of their applications, then on March 31, just shy of four months after applying, they were finally approved.

“I am so excited! We can run with scissors now,” she joked.

But Elliott, the mother of four in Salem, is still waiting. She gave up calling the state’s Medicaid helpline after growing frustrated from spending hours on hold and being disconnected because of high call volumes. Instead, she checks on her application through the enrollment specialists at the clinic where she applied.

She was sent home from the ER with ibuprofen and Tamiflu and has yet to see a bill. If her Medicaid application is approved, her coverage will be backdated to the month she applied, likely covering her ER trip. But if her application is rejected, that cost will be added to her medical debt, which Elliott estimates is already tens of thousands of dollars.

“It makes me feel like it’s a joke,” Elliott said of Missouri’s expansion of Medicaid. “Like they’re just throwing it out there to get all these people to apply for it, but they’re not going to really help anybody.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Missouri State Capitol building in Jefferson City (Getty Images).

This story was originally published by Kaiser Health News. 

Missouri state Rep. Tricia Derges is pushing a bill to give assistant physicians like herself a pathway to becoming fully licensed doctors in the state.

Not that Derges — among the highest-profile holders of the assistant physician license created in 2014 to ease a doctor shortage — is the most persuasive advocate right now.

Derges was indicted last year on charges accusing her of selling fake stem-cell treatments, illegally prescribing drugs, and fraudulently receiving COVID relief funds. Derges, who did not respond to multiple messages sent to her and her lawyer, has pleaded not guilty. But she has already been kicked out of the Republican caucus, forced to move her legislative office into a statehouse broom closet, put on a three-year probation for her narcotics license, and denied the ability to run for reelection as a Republican following her indictment. A trial is set for June.

Her personal tribulations have jeopardized an already contentious solution for states that struggle with gaps in primary health care. Even some early proponents now want to rein in the assistant physician license.

Assistant physicians — sometimes called associate physicians, and not to be confused with physician assistants — are medical school graduates who have not yet completed residency training. Similar licenses also now exist in Arizona, Arkansas, Kansas, and Utah. Virginia is considering adding one, and model legislation is making such licenses easier than ever for other state legislatures to adopt.

Derges’ proposed legislation would allow assistant physicians to become licensed — similar to doctors who have completed a residency — provided an assistant physician has practiced for five years with a collaborating physician, passed a licensure exam, and completed certain training requirements.

Her bill would create a new path for training physicians. Competing legislation aims to scale back the license, though, and cap the number of years assistant physicians can practice until they funnel back into residency programs.

Dr. Keith Frederick, a former state representative and orthopedic surgeon from Rolla, Missouri, proposed the original assistant physician legislation, the first of its kind in the nation.

Nearly every county in Missouri is short of primary care providers, according to the federal Health Services and Resources Administration. It’d take nearly 500 physicians to fill that void, but efforts to get doctors to practice in underserved areas have been “chronically unsuccessful,” Frederick said. At the same time, thousands of medical school graduates who apply for residency programs each year are not accepted — 9,155 applicants did not match to a program in 2021 alone, or about 1 in 5 of the candidates, most coming from international medical schools.

The assistant physician license allows those medical school graduates to practice medicine in Missouri under a collaborative practice agreement with a physician, who is ultimately responsible for the care given, and on the condition that they do so in an underserved area. They can see patients, prescribe drugs, and provide certain treatments, in much the same way as nurse practitioners or physician assistants — so-called midlevel practitioners, both of which have distinct master’s-level training.

Frederick’s bill passed the same year it was introduced, a legislative feat he described as “pretty remarkable.”

The idea did have its detractors at the time. Chief among them was the Missouri Nurses Association, which argued the state’s 12,000 nurse practitioners were better suited to address primary care shortages. The association views the state’s rules for nurse practitioners as among “the most severely restrictive in the nation.”

Nationally, the American Medical Association, American Academy of Family Physicians, and Accreditation Council for Graduate Medical Education also opposed the license.

One initial supporter of the idea was Dr. Jeff Davis, chief medical officer for Scotland County Hospital in rural Memphis, Missouri, and an executive committee member of the Missouri Association of Osteopathic Physicians and Surgeons. Eight years after the law passed, however, Davis has no assistant physicians working with him, even though he said he has several openings that would benefit from them.

The challenge, Davis said, is Medicare will not reimburse for care provided by assistant physicians. Hospitals in rural areas often depend on revenue from that public insurance program for Americans 65 and older. But for hospitals to get paid by Medicare for the work of an assistant physician, Davis said, the assistant physician would have to work under the direct supervision of a physician whose name would be used to submit the bill.

“That doesn’t make much business sense,” Davis said.

Frederick hopes that having more states create an assistant physician license will force the hand of the Centers for Medicare & Medicaid Services to start reimbursing for the work done by those clinicians. The American Legislative Exchange Council adopted model associate physician legislation after Frederick presented the idea at the conservative nonprofit’s summit last year.

Currently, Missouri has 348 active licenses for assistant physicians, including Dr. Trevor Cook, creator of the Association of Medical Doctor Assistant Physicians. Cook graduated in 2014 from the International American University medical school on the Caribbean island of St. Lucia.

“Unfortunately, I was one of those many, many, many, many thousands of doctors that don’t match each year” into a residency program, Cook said.

Cook has practiced at Downtown Urgent Care in St. Louis since 2018, a position he called rewarding. He is supportive of a pathway for assistant physicians to become fully licensed in Missouri, like the one proposed by Derges. As to the indictment, Cook said, one person’s actions are not representative of an entire group of practitioners.

A review of active assistant physician licenses in the state — including Derges’ — found none under current disciplinary action. Two were previously under probation due to prior behavior.

Still, state doctor groups that initially supported the idea now want to cap the number of years someone can hold an assistant physician license, as other states have done. Under current Missouri law, assistant physicians can practice indefinitely.

“As with anything, you find out that people try to game the system and work an angle and get something that wasn’t intended out of something you did in good faith,” Davis said.

Dr. Sterling Ransone, president of the American Academy of Family Physicians, said he already had concerns about the quality of care provided by assistant physicians, citing a 2018 JAMA article that found they had lagging test scores compared with their counterparts in residency programs. He said he’s doubtful about creating an alternative pathway to full physician licensure.

“I would personally have trouble supporting it without a lot more information to verify quality standards,” Ransone said.

The American Medical Association favors a bill in Congress that would increase the number of residency positions in the U.S. by 14,000 over the next seven years.

Dr. Kevin Klauer, CEO of the American Osteopathic Association, didn’t shut the door on a role for assistant physicians but said he was skeptical: “We have to be responsible to make sure that we’ve put all the safeguards in with training and verification and monitoring, so that health care that is delivered by a physician is up to the standards that it should be.”

Frederick called those concerns “purely turf protection” amid what he said is a tremendous health care shortage.

“We have all these people that are highly trained,” Frederick said. “Why would you waste that resource?”

(Eric Harkleroad/KHN illustration; Getty Images; Unsplash; Missouri Department of Social Services)

This story was originally published by Kaiser Health News. 

Aneka French applied for Medicaid in October, not long after Missouri became the 38th state to expand eligibility for the program.

But her application sat for months in a backlog with tens of thousands of others. While she waited, French, 45, an uninsured medical technician from St. Louis, paid out-of-pocket when she was treated at a health clinic for a knee injury last fall.

For nearly a decade, Missouri’s Republican political leaders resisted expanding eligibility for Medicaid, the state-federal health insurance program for people with low incomes. It took effect in summer 2021 after a voter ballot initiative passed in 2020. Now, Missouri has more pending applications for MO HealthNet — the name of the state’s Medicaid program — than people enrolled through the expansion. While 64,210 people have been approved as part of the expansion, nearly 73,000 applications were pending as of early February.

In the state’s most recent report, it said it was taking an average of 70 days to process typical applications — longer than the 45 days allowed by federal law.

“This means that in the midst of a raging pandemic, people who are finally able to get health coverage are being left out of the system and are left waiting and waiting,” said Melissa Burroughs, associate director for strategic partnerships at Families USA, a consumer advocacy group. “This is a complete injustice to those hit hard financially and healthwise by the pandemic.”

By contrast, most other states are processing Medicaid applications within a week, with many cases taking less than a day, according to federal data from 2021.

Kim Evans, director of the Missouri Department of Social Services’ Family Support Division, told the MO HealthNet Oversight Committee in February that the delay is due to a shortage of workers that has become more acute because of the pandemic. She also said the agency was stretched thin in the fall when it had to handle applications submitted during open enrollment in the Affordable Care Act’s marketplace, where people sign up for private coverage but can be redirected to Medicaid if they qualify.

Before expansion, Missouri’s Medicaid program did not cover adults without children. Now, Medicaid is available to all Missourians with incomes below 138% of the federal poverty level, or about $18,800 per year for an individual. Those whose applications are approved will be eligible for coverage retroactive to the month they applied, and possibly up to three months before then.

But Tricia Brooks, a research professor at Georgetown University’s Center for Children and Families, said people waiting to have their applications approved typically keep acting as if they are uninsured, delaying needed care and avoiding preventive services such as health screenings. If they do seek care, they will face large medical bills if their application is later denied.

French, the St. Louis medical technician, was notified in January — three months after she applied — that her Medicaid application had been approved. She said that if she had been approved sooner, she might have gone to an emergency room for her knee injury but didn’t because she was worried about getting stuck with a large bill. Instead, she went to a community health center that charges uninsured patients on a sliding fee scale based on their income.

Missouri is not the first state to experience such delays. When 26 states expanded Medicaid in 2014 under the ACA, many struggled to keep up with the demands of applications. For example, California in June 2014 had a backlog of 900,000 applications, prompting a lawsuit by health advocates.

Patient advocates say Missouri had years to get ready to expand Medicaid. And, they note, Missouri’s delays in processing applications have been an ongoing problem that worsened after expansion.

“At the very least, they are starved for resources, and, at worst, they are doing this on purpose,” Burroughs said.

Brooks said Missouri has consistently taken more than 45 days to process applications. She said that more than 40% of applications in 2018 needed more than 45 days to process and that the number rose above 50% in 2019 and to 60% in 2020.

“Where’s the accountability and federal oversight when there is this kind of historical evidence that Missouri’s eligibility enterprise is significantly out of compliance with federal standards?” Brooks asked. “The situation has worsened, not improved.”

Centers for Medicare & Medicaid Services spokesperson Beth Lynk said the agency is aware of the problem and is working with Missouri to bring it into compliance.

The delays in Missouri also stand out because of the state’s long resistance to expansion.

Even after the voters approved the ballot initiative in 2020, the Republican-controlled state legislature refused to fund the expansion, and the state withdrew its plan. In August, a judge ordered the state to start accepting applications from newly eligible adults. Missouri did not begin processing them until Oct. 1 because of a need for computer updates.

Oklahoma expanded Medicaid in much the same way as Missouri: Voters approved it in 2020, to begin July 1, 2021. But Oklahoma has been far quicker to enroll people in its expansion program — more than 230,000 had been enrolled through December 2021, nearly four times as many as Missouri had signed up through early February. Oklahoma gives people an answer as soon as they submit their application.

Washington University health economist Timothy McBride said the patchwork computer systems that Missouri’s Medicaid program uses are extremely outdated and have caused problems for years.

Adding to the challenge, Missouri is reviewing the eligibility of tens of thousands of applications submitted through the federal marketplace during open enrollment. But because the marketplace assesses eligibility, some states that expanded Medicaid recently, such as Virginia and Louisiana, use that federal determination to handle the increased volume of applications and get people enrolled more quickly.

Starting in September, Moshe Biron, 33, of suburban St. Louis called Missouri’s Medicaid help line at least 20 times, spending more than 15 hours on hold trying to figure out whether his five children still qualified for coverage after he started full-time work as a teacher. Through his state senator’s office, he learned in December that his children remained eligible but that he and his wife did not.

Department of Social Services spokesperson Heather Dolce said the Family Support Division was “aggressively tackling” the backlog by offering staffers overtime and prioritizing the oldest applications.

But health advocates criticized the agency for hiring third-party vendors to check the income and address information, which sometimes results in bad data that department staffers must fix. For example, some Medicaid recipients were erroneously flagged as living out of state, triggering a removal and appeals process. The state has paused residency checks at least through February.

Brooks said Missouri’s application processing time could get even worse when the covid public health emergency ends — now slated for mid-April. Federal rules in place during the pandemic have prohibited states from removing Medicaid recipients who are no longer eligible due to income status since March 2020.

But the state will soon have to review every enrollee’s eligibility status, adding thousands of cases to the workload. In December, Missouri had nearly 1.2 million Medicaid enrollees, up from about 861,000 in March 2020.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Already strained by the COVID-19 pandemic, hospitals around the country are desperate to staff their facilities as the highly transmissible omicron variant spreads (Getty Images).

This story was originally publish by Kaiser Health News.

A recent lawsuit filed by one Wisconsin health system that temporarily prevented seven workers from starting new jobs at a different health network raised eyebrows, including those of Brock Slabach, chief operations officer of the National Rural Health Association.

“To me, that signifies the desperation that hospital leaders are facing in trying to staff their hospitals,” said Slabach.

His concern is for the smaller facilities that lack the resources to compete.

Already strained by the COVID-19 pandemic, hospitals around the country are desperate to staff their facilities as the highly transmissible omicron variant spreads. Governors in states such as Massachusetts and Wisconsin deployed the National Guard to help hospitals combat the surge. Six hospitals in Cleveland took out a full-page ad in the Sunday Plain Dealer with a singular plea to the community, “Help.” CoxHealth is among the medical systems in Missouri to ask its office staff to help out on the front lines.

With no end to the crisis in sight, hospitals have taken to enticing workers from other facilities to fulfill needs. In South Dakota, Monument Health offered signing bonuses up to $40,000 for experienced nurses who would make a two-year commitment to the health system. Job listings for nurses in Maine and Virginia include $20,000 signing bonuses. Montana is offering health care workers up to $12,500 in moving expenses to relocate to the state.

The labor market squeeze is affecting more than just health care. People are being lured into teaching jobs and the military with $20,000 signing bonuses, while construction and trucking companies are looking everywhere for workers, even within their competitors’ ranks.

But in the life-or-death field of medical care, these sorts of bounties have turned an already stressful situation into one that Slabach called “almost combustible.” Smaller facilities — particularly rural ones that have struggled for years to stay afloat — are finding it difficult, if not impossible, to compete for health care workers in this labor market. If a hospital is unable to maintain safe staffing levels, it could be forced to curtail services or possibly close, a devastating blow for both the patients and economies of those communities. Nineteen rural hospitals closed in 2020 alone.

In Pilot Knob, Missouri, Iron County Medical Center CEO Joshua Gilmore said staffing costs for his 15-bed rural hospital have jumped 15% to 20% during the pandemic after he gave raises across the board to nurses and nursing assistants. He’s also offering $10,000 signing bonuses to fill three nursing positions.

Those are big expenses for such a small facility, particularly during a pandemic when spending on supplies like masks and other personal protective equipment has also increased. The hospital has received just under $5 million in federal COVID relief, without which it likely would have closed, Gilmore said.

Gilmore said he has lost nurses to travel nursing jobs that can pay $10,000 per week. Typical pay for a nurse at Gilmore’s facility is about $70,000 per year, he said. The hospital’s staffing costs could have risen even higher if he had hired more travel nurses. Not only is their pay rate too expensive, he said, but his hospital lacks an intensive care unit — the area most commonly staffed by temporary nurses.

Two hundred miles to the west in Springfield, Missouri, CoxHealth has invested in training and retaining health care workers for years, according to Andy Hedgpeth, its vice president of human resources. Those efforts included increasing the class size at the affiliated nursing school from 250 to 400 students per year. Even so, the health system spent $25.5 million last year to give raises to 6,500 employees in an effort to retain workers.

“What we are seeing right now is the magnification of a critical shortage across the nation,” Hedgpeth said. “The way out of that is through workforce development and showing individuals they can have stable careers in their community.”

When hospitals do spend the money to hire travel nurses, it often ruffles the feathers of staff nurses, many of whom are already fighting for better working conditions. Hospitals are also losing workers to the very agencies they depend on for help.

In La Crosse, Wisconsin, the travel nursing agency Dedicated Nursing Associates placed a billboard near a Gundersen Health System facility advertising the agency’s pay: $91 an hour for registered nurses, $69 for licensed practical nurses, and $41 for certified nursing assistants. Neither Gundersen nor Dedicated Nursing Associates responded to requests for comment.

Shane Johnson took to travel nursing after he was laid off from MU Health Care in Columbia, Missouri, as part of pandemic cutbacks in May 2020. He said it’s hard to see himself going back to being on staff at a hospital given the better pay and flexibility that the temporary assignments afford him. A six-week contract in Chicago allowed him to earn as much in two days as he would have in two weeks at his previous job. A 15-week contract in Louisville, Kentucky, allowed him to be closer to family. His current work with the staffing platform CareRev allows him to choose his assignments on a shift-by-shift basis while still getting health insurance and retirement benefits.

“The question all these nurses are asking is: If they can pay these crisis wages right now, why couldn’t they pay us more to do the work we were doing?” Johnson said.

The travel nursing industry has caught the eye of lawmakers. Some states are considering legislation that would cap travel nurses’ pay. Federally, more than 200 members of Congress asked the White House Coronavirus Response Team coordinator to investigate possible “anticompetitive activity.”

Even in a hiring environment this competitive, the Wisconsin lawsuit filed on Jan. 20 is a new frontier in the staffing battles. ThedaCare, a regional health system in Wisconsin’s Fox Valley, filed a temporary injunction attempting to prevent three of its nurses and four of its technicians — all at-will employees — from leaving and joining competitor Ascension Wisconsin until ThedaCare could find replacement workers. A judge temporarily blocked those health care workers from starting their new jobs before deciding ThedaCare couldn’t force the employees to stay.

The spat is just a small piece of “a much bigger issue,” according to Tim Size, executive director of Rural Wisconsin Health Cooperative. Without intervention, he said, the staffing shortages currently attributed to the pandemic could become the new normal.

Case in point, Size said, is a 2021 report by the Wisconsin Council on Medical Education and Workforce that projects the state could be short almost 16,000 nurses by 2035. Even if the reality is only half as bad as the projection, Size said, a shortage of 8,000 nurses in Wisconsin dwarfs the shortages now experienced in the pandemic.

“We have to make a much more substantive investment in our schools of nursing,” Size said.

According to Slabach, one missed opportunity was the National Health Care Workforce Commission created in 2010 by the Affordable Care Act but never funded by Congress. The commission would have been tasked with measuring the scope of the health care workforce challenges and proposing solutions, but it has never convened.

“We need to mobilize all of the resources that we have to figure out how we’re going to solve this problem, and it starts with a systemic approach,” Slabach said. “We can’t just pay our way out of this through bonuses and bounties.”

In the shorter term, Gilmore said, small hospitals like his could use more federal support. The $5 million that Iron County Medical Center received was critical, Gilmore said, but has already been spent. Now his facility is dealing with the omicron surge and is still reeling from the delta wave over the summer.

“I’m calling my congressman and letting him know that we need help,” Gilmore said. “We can’t do this on our own.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

A Missouri Senate committee recommended using surplus COVID relief funds for the Department of Social Services to update the benefit computer systems (Eric Harkleroad/KHN illustration; Unsplash; Getty Images).

This story was originally published by Kaiser Health News. 

Jamie Taylor received two letters from the Missouri Department of Social Services Family Support Division that began, “Good news,” before stating that she was denied Medicaid coverage. Her income exceeded the state’s limits for the federal-state public health insurance program for people with low incomes.

Missouri officials now blame the incongruous greeting for the decidedly bad news on a computer programming error, but it was just the beginning of Taylor’s ongoing saga trying to get assistance from Missouri’s safety net. Taylor, now 41, spent hours on the phone, enduring four-hour hold times and dropped calls, and received delayed mailings of time-sensitive documents to her home in Sikeston.

Taylor’s struggles are not uncommon in Missouri or even nationally. Instead, they are part of what the National Association of State Medicaid Directors’ executive director, Matt Salo, called “the next great challenge that government has to solve.” Namely: the extremely outdated technology used by a humongous web of government agencies, from local public health to state-run benefits programs.

Although many people like Taylor struggled with these systems before the pandemic began, COVID-19 exposed just how antiquated and ill equipped many of them were to handle unprecedented demand. For example, while private-sector businesses beefed up the ability to stream TV shows, created apps for food deliveries, and moved offices online, public health officials tracked COVID outbreaks by fax machine.

In response to the new light shed on these long-standing problems, momentum is building for government tech updates. The pandemic also has created once-in-a-generation pools of money from pandemic relief funding and higher-than-expected tax revenues to fund such projects.

President Joe Biden issued an executive order in December calling on benefits enrollment to be streamlined. State lawmakers are urging the use of unspent COVID relief money to address the issue.

That’s critical because outdated information systems can trigger ripple effects throughout the public benefits system, according to Jessica Kahn, who is a partner at the McKinsey & Co. consulting firm and previously led data and systems for Medicaid at the Centers for Medicare & Medicaid Services. One example: Online benefits applications that are not user-friendly can push more applicants to call phone help lines. That can strain call centers that, like many industries, are having difficulty meeting staffing needs.

Some states are already eyeing improvements:

• In Missouri, a state Senate committee recommended using surplus COVID relief funds for the Department of Social Services to update computer systems. The department also has proposed using federal pandemic money on artificial intelligence to process some 50,000 documents per week. That work is currently done manually at an average of two minutes per document.
• In Wisconsin, Democratic Gov. Tony Evers has directed up to $80 million to replace the state’s dated unemployment infrastructure.
• Kansas is among the first states working with the U.S. Department of Labor’s newly created Office of Unemployment Insurance Modernization set to manage $2 billion in funds appropriated by the American Rescue Plan Act last year.

Recent history suggests these fixes may be easier said than done. More than 10 years ago, the Obama administration invested $36 billion to develop and mandate the national use of electronic health records for patients. Despite the billions invested, the digitizing of patients’ records has been plagued with problems. Indeed, to get reimbursed by their insurers for purchases of rapid COVID tests, a requirement imposed by the Biden administration, patients have to fax or mail in claims and receipts.

The Affordable Care Act also offered a chance to improve state technology infrastructure, according to Salo. From 2011 through 2018, the federal government offered to cover up to 90% of the funds necessary to replace or update old Medicaid IT systems, many of which were programmed in COBOL, a computer programming language dating to 1959. Those updates could have benefited other parts of the government safety net as well, since state-administered assistance programs frequently share technology and personnel.

But, Salo said, the ACA required these new Medicaid computer systems to communicate directly with the health care exchanges created under the law. States faced varying degrees of trouble. Tennessee applications got lost, leading to a class-action lawsuit. Many states never fully overhauled their benefit systems.

During the pandemic, tech issues have become impossible to ignore. Amid the early lockdowns, hundreds of thousands of people waited months for unemployment help as states such as New Jersey, Kansas, and Wisconsin struggled to program newly created benefits into existing software. Local and state vaccine registration sites were plagued with so many problems they were inaccessible to many, including blind people, a violation of federal disability laws.

Underfunding is nothing new to public health and safety-net programs. Public officials have been reluctant to allocate the money necessary to overhaul dated computer systems — projects that can cost tens of millions of dollars.

Missouri’s safety-net technology woes are well documented. A 2019 McKinsey assessment of the state’s Medicaid program noted the system was made up of about 70 components, partially developed within a mainframe from 1979, that was “not positioned to meet both current and future needs.” In a 2020 report for the state, Department of Social Services staffers called the benefits enrollment process “siloed” and “built on workarounds,” while participants called it “dehumanizing.”

Taylor has experienced that frustration. Eight years ago, a mysterious medical condition forced her out of the workforce, causing her to lose her job-based health insurance. At various times, she’s been diagnosed with ulcerative colitis, Crohn’s disease, gastritis, inflammatory bowel disease, and gastroparesis, but lacking insurance and unable to qualify for Medicaid, she was forced to seek treatment in emergency rooms. She has been hospitalized repeatedly over the years, including for 21 days combined since July. She estimated her medical debt tops $100,000.

When Taylor applied for Medicaid over the phone again in October, she received a rejection letter within days.

At a loss because her family of three’s $1,300 monthly income now falls within state income limits since Missouri’s 2021 expansion of Medicaid, Taylor reached out to state Rep. Sarah Unsicker. The Democratic lawmaker represents a district 145 miles away in St. Louis, but Taylor had seen her championing Medicaid expansion on Twitter. After Unsicker queried the department, she learned that a default application answer had disqualified Taylor from getting Medicaid because it incorrectly listed her as receiving Medicare — the public insurance designed for older Americans that Taylor does not qualify for.

“Within 24 hours, I had a message back from Sarah saying that another letter was on the way and I should be much happier with the answer,” Taylor recalled.

Finally enrolled in Medicaid, Taylor is now struggling to get nutrition assistance, called SNAP, which in Missouri is processed through a separate eligibility system. The programs have similar income requirements, but Taylor was not able to verify her income over the phone for SNAP as she could for Medicaid.

Instead, she received a letter on Nov. 26 requesting her tax returns by Nov. 29. By the time she was able to locate and email those documents on Dec. 1, she had been denied. Every call to sort out the issue has been met with hold times upward of four hours or queues so full that her call gets dropped.

Medicaid and SNAP applications are combined in 31 states, according to a 2019 analysis from the Code for America advocacy group. But not in hers.

“It just doesn’t make sense to me why Medicaid can verify my tax income over the phone, but SNAP needs me to send them a copy of the whole thing,” Taylor said.

Eventually, she gave up and started the whole process over. She’s still waiting.

Demonstrators stand outside of the Governor's Mansion in Jefferson City on July 1, 2021 and hold signs urging Gov. Mike Parson to fund voter-approved Medicaid expansion (Tessa Weinberg/Missouri Independent).

This story was originally published by Kaiser Health News.

Temp worker James Dickerson applied for Medicaid because it will be cheaper than his current health plan. Home health aide Sharon Coleman looks forward to having coverage that will cover a hospital stay. Incoming medical student Danielle Gaddis no longer worries a trip to the doctor will leave her in debt.

All three are among the roughly 490,000 people newly eligible for Medicaid after Oklahoma and Missouri voters in 2020 approved expanding the federal-state public health insurance program for people with low incomes. In both states, people who earn up to 138% of the federal poverty level — about $18,000 per year for an individual — can now get the free coverage even if they don’t have disabilities.

But the experience of the newly eligible in those two states — an estimated 215,000 people in Oklahoma and 275,000 in Missouri — has differed dramatically. Oklahoma has enrolled over 210,000 people, while Missouri has enrolled fewer than 20,000.

The difference comes down to the approaches taken by the two states, both of which are Republican-led and resisted expanding Medicaid for years.

Once Oklahoma voters approved the expansion, it was quickly embraced: The legislature appropriated $164 million in the state budget to fund it. Applications opened this June, one month before the program began, and within a month, 113,000 people had been approved.

In August, Oklahoma Secretary of Health and Mental Health Kevin Corbett told state lawmakers about one of those enrollees: a 62-year-old woman able to schedule appointments with a doctor and dentist for the first time in 20 years.

“Truly life-changing,” Corbett said. “We feel very good about what we’re being able to do.”

Other states that expanded Medicaid in recent years saw enrollment swell in the first month. Louisiana’s combined Medicaid and Children’s Health Insurance Program rolls grew by over 255,000; Virginia’s increased by almost 184,000; Idaho added about 45,500 enrollees, roughly half of the anticipated number of newly eligible people; and Montana added over 23,000, 51% of its expected total. Missouri, on the other hand, has enrolled only about 7% of newly eligible people in Medicaid.

“You can expand Medicaid on the books, but there are a lot of ways that you can throw up barriers to keep people from getting enrolled,” said Sidney Watson, director of the Center for Health Law Studies at Saint Louis University.

Expansion has been a slog in Missouri. The legislature refused to fund the voter-approved program, prompting Republican Gov. Mike Parson to announce in May that the state would “withdraw” its expansion plan. Then, in August, a judge ordered the state to start accepting applications, which it did. But Missouri could not begin processing them until Oct. 1.

That whiplash means many newly qualified Missourians are likely unaware they could be covered by Medicaid, according to University of Missouri-Kansas City law professor Ann Marie Marciarille.

Marciarille said that the state has a responsibility to get the word out about the program and that Missouri has done little more than what was legally required by the August court order. The critique has been echoed by others.

Heather Dolce, a spokesperson for the Missouri Department of Social Services, which oversees Medicaid, said the department had publicized the Medicaid expansion by updating its website, emailing participants in its family support programs and posting on social media. The department’s Facebook and Twitter accounts show a handful of posts about the expansion, including two tweets posted the day after the publication of a KCUR article that noted the state’s outreach efforts had been slow.

Oklahoma’s efforts, meanwhile, included outreach events, TV interviews, plus a video and social media campaign.

In Missouri, without robust advertising by the state, much of the outreach has fallen to clinics like Affinia Healthcare in St. Louis. James Dickerson saw a flyer about the Medicaid expansion on the front door of an Affinia clinic when he went to see a doctor about an ear infection.

The 59-year-old, who works various jobs through a temp agency, was eager to sign up. He had a good experience with Medicaid in 2014 when he was covered while getting spinal surgery for a workplace injury.

At Affinia, Dickerson met with a certified application counselor, Sunni Johnson, who within about five minutes got all the information she needed to send in his application. Most clinics like this have specialists who can help patients enroll in health insurance and other assistance programs.

By federal law, Missouri is required to determine whether an applicant is eligible for the program within 45 days. But Michelle Davis Reed, the lead eligibility and enrollment coordinator at Northwest Health Services, based in St. Joseph, Missouri, said in November that some applications she had filed in August were still not processed.

Dolce said the state had 32,000 Medicaid applications pending as of Nov. 17. She did not respond directly to a question about the number of staffers processing the applications but said overtime was being used.

In Oklahoma, 144,000 of the 210,000 Medicaid expansion enrollees previously lacked insurance. The remainder were enrolled when the state evaluated whether people who had applied to other benefit programs were also now eligible for Medicaid.

One Missouri program that could be a candidate for such reprocessing is Gateway to Better Health, a temporary insurance program that Sharon Coleman uses in St. Louis. Gateway covers about 16,000 residents of the city of St. Louis and St. Louis County who earn up to 100% of the federal poverty level.

Angela Brown, CEO of the St. Louis Regional Health Commission, which administers Gateway, said she believes that at least 90% of its participants would qualify for Medicaid under expansion but that bureaucratic hurdles made encouraging patients to sign up for Medicaid directly simpler than the process necessary to move them into a new system. Gateway sent a text message to Coleman and other recipients urging them to apply.

After getting the alert, Coleman, 60, who provides in-home care to older adults, went to Affinia specifically to enroll in Medicaid. She has high blood pressure, but her health is otherwise good — she said she hasn’t been to a hospital since her son was born 40 years ago. Coleman was relieved to know that if she had to go now, her bills would be covered by Medicaid. Gateway covers only primary, specialty and urgent care.

“I can go to the emergency room now and not worry about them sending me bills I can’t pay,” Coleman said after visiting with Johnson, the enrollment specialist.

In Oklahoma, 26-year-old Danielle Gaddis had been uninsured for two years. She was reluctant to see a doctor during that time, fearing the medical bills. So she was thankful to be enrolled in Oklahoma’s Medicaid program when she got sick recently. Like Dickerson and Coleman, Gaddis applied for Medicaid with the help of a specialist at a health clinic, Mary Mahoney Memorial Health Center in Oklahoma City.

“Because of covid, a cold could be the end of the world, so you freak out,” said Gaddis, who will start medical school in August after deferring for a year.

Gaddis said she’s keeping the experience of being uninsured front of mind as she begins her medical training.

“No one should ever have to worry about, ‘How long am I going to have to ride this out before I go to see what’s wrong?’” Gaddis said. “That’s how things get worse.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

Dr. Elena Ignatova prepares to make an impression of a patient’s mouth to fit dentures at CareSTL Health in St. Louis. Only 27% of Missouri dentists accept Medicaid, and many of those who do work at safety-net clinics like CareSTL Health (photo: Bram Sable-Smith).

This story was originally published by Kaiser Health News and KSMU.

At the Access Family Care clinics in southwestern Missouri, the next available nonemergency dental appointment is next summer. Northwest Health Services, headquartered in St. Joseph, is booked through May. The wait is a little shorter at CareSTL Health in St. Louis — around six weeks.

Roughly 275,000 Missourians are newly eligible this year for Medicaid, the federal-state public health insurance program for people with low incomes, and they can be covered for dental care, too. Missouri voters approved expansion of the program in 2020, the latest of 39 states to do so as part of the Affordable Care Act, but politics delayed its implementation until Oct. 1. Adults earning up to 138% of the federal poverty level — about $17,774 per year for an individual or $24,040 for a family of two — can now get coverage.

But one big question remains: Who will treat these newly insured dental patients?

Only 27% of dentists in Missouri accept Medicaid, according to state data, one of the lowest rates in the country. Many of them work at what are known as safety-net clinics, such as Access Family Care, Northwest Health Services and CareSTL Health. Such clinics receive federal funds to serve uninsured patients on a sliding scale and was experiencing huge demand for dental services before expansion.

The reason so few Missouri dentists accept Medicaid is simple, according to Vicki Wilbers, executive director of the Missouri Dental Association: The state’s program pays dentists extremely poorly compared with private insurance or what a dentist could charge a patient paying cash. Adding to the strain, said Wilbers, dentists who do accept Medicaid often must deal with the state plus private insurers that administer Medicaid through a program known as managed care.

“You have more people on the rolls, you still don’t have reimbursement rates increase,” Wilbers said. “And it’s cumbersome.”

Still, for these new patients, the coverage can be life-changing.

Only 37% of adults in the state with incomes under $15,000 per year saw a dentist in 2018 compared with 76% of adults earning over $50,000, according to a state report. A survey by the American Dental Association found 53% of low-income Missourians have difficulty chewing, 43% avoid smiling because of the condition of their mouth and 40% experience pain.

“I just don’t think those stories are told enough,” said Steve Douglas, spokesperson for Access Family Care in Neosho.

Douglas described a patient of the clinic who believes his so-far-unsuccessful quest for higher-paying work has been hindered by the appearance of his teeth.

“We’re hoping that with the Medicaid expansion we can get him in for some care,” Douglas said. “He would like to save some of his teeth and not go to full dentures.”

About 62% of Missouri adults making under $15,000 per year have lost at least one tooth to decay or gum disease, and 42% of people 65 and older in that income range have lost all of them, according to the state report. For Missourians earning over $50,000, those rates are 34% and 8%, respectively.

Part of the dental care backlog at Access Family Care, which offers dental services at five locations around southwestern Missouri, is due to the pandemic. The clinic laid off all 95 of its dental staffers in March 2020 before gradually building back to full capacity. As with dental practices nationwide, many of their patients are now coming to get the dental work done that they delayed earlier over fears of exposure to the coronavirus.

But central to the huge demand is an overall need for more providers. Nearly 1.7 million Missourians live in a federally designated dental professional shortage area, one of the highest levels of unmet needs in the country. It’d take another 365 dentists to fill that void, at least one extra dentist for every 10 already practicing in the state.

“We could easily employ another four dentists and still have high demand,” Douglas said.

His clinic, Access Family Care, has indeed hired two new dentists to start in 2022. To manage the dental caseload until then, though, it had to temporarily stop seeing new patients.

In St. Louis, Dr. Elena Ignatova, director of dental services at CareSTL Health, had 18 patients scheduled on a recent Wednesday in November. About a quarter of them were insured through Medicaid.

By 10 a.m., she had cast a mold of one patient’s mouth to fit dentures, referred another to an oral surgeon for a root canal and prepped a fourth-year dental student for the extraction of a Medicaid patient’s remaining teeth. In Missouri, Medicaid covers simple tooth extractions for adults but not root canals or crowns.

“We remove teeth because the other treatment is too expensive and they cannot afford it,” Ignatova said. “Then it can take years for those patients to come up with the money for dentures.”

Ignatova is booked into February, but the clinic still takes walk-ins for dental emergencies. She’s also working her way through a waiting list of 39 patients who might be able to show up quickly if a cancellation or no-show opens a spot in her schedule.

There is easily enough demand for another dentist, but Ignatova said they’re still working on hiring the dental assistants and hygienists needed to reopen the school-based clinics for kids they operated before the pandemic. Those hirings are in the works, but it is slow going. As with many health care facilities, she and others said, President Joe Biden’s vaccine mandates have added an extra hurdle to recruiting and retaining staff.

One clinic that isn’t seeing a bottleneck of dental patients, though, is KC Care Health Center in Kansas City. Kristine Cody, the clinic’s vice president of oral health services, said a new patient could be seen there in about a week. The Kansas City region benefits from having the University of Missouri-Kansas City School of Dentistry, which offers reduced-cost care to patients at the clinic where its students are trained, plus several other safety-net clinics.

KC Care also added two dentists and extended its clinical hours in anticipation of Medicaid expansion.

“I just hope people look to use it,” Cody said.

Mawata Kamara works as a nurse at San Leandro Hospital in San Leandro, Calif, where visitors have twice made gun threats against staffers in the emergency department since the pandemic began (Shelby Knowles for KHN).

This story was originally published by Kaiser Health News.

The San Leandro Hospital emergency department, where nurse Mawata Kamara works, went into lockdown recently when a visitor, agitated about being barred from seeing a patient due to COVID-19 restrictions, threatened to bring a gun to the California facility.

It wasn’t the first time the department faced a gun threat during the pandemic. Earlier in the year, a psychiatric patient well known at the department became increasingly violent, spewing racial slurs, spitting toward staffers and lobbing punches before eventually threatening to shoot Kamara in the face.

“Violence has always been a problem,” Kamara said. “This pandemic really just added a magnifying glass.”

In the earliest days of the pandemic, nightly celebrations lauded the bravery of front-line health care workers. Eighteen months later, those same workers say they are experiencing an alarming rise in violence in their workplaces.

A nurse testified before a Georgia Senate study committee in September that she was attacked by a patient so severely last spring she landed in the ER of her own hospital.

At Research Medical Center in Kansas City, security was called to the COVID unit, said nurse Jenn Caldwell, when a visitor aggressively yelled at the nursing staff about the condition of his wife, who was a patient.

In Missouri, a tripling of physical assaults against nurses prompted Cox Medical Center Branson to issue panic buttons that can be worn on employees’ identification badges.

Hospital executives were already attuned to workplace violence before the pandemic struck. But stresses from COVID have exacerbated the problem, they say, prompting increased security, de-escalation training and pleas for civility. And while many hospitals work to address the issue on their own, nurses and other workers are pushing federal legislation to create enforceable standards nationwide.

Paul Sarnese, an executive at Virtua Health in New Jersey and president of the International Association for Healthcare Security and Safety, said many studies show health care workers are much more likely to be victims of aggravated assault than workers in any other industry.

Federal data shows health care workers faced 73% of all nonfatal injuries from workplace violence in the U.S. in 2018. It’s too early to have comprehensive stats from the pandemic.

Even so, Michelle Wallace, chief nursing officer at Grady Health System in Georgia, said the violence is likely even higher because many victims of patient assaults don’t report them.

“We say, ‘This is part of our job,’” said Wallace, who advocates for more reporting.

Caldwell said she had been a nurse for less than three months the first time she was assaulted at work — a patient spit at her. In the four years since, she estimated, she hasn’t gone more than three months without being verbally or physically assaulted.

“I wouldn’t say that it’s expected, but it is accepted,” Caldwell said. “We have a lot of people with mental health issues that come through our doors.”

Jackie Gatz, vice president of safety and preparedness for the Missouri Hospital Association, said a lack of behavioral health resources can spur violence as patients seek treatment for mental health issues and substance use disorders in ERs. Life can also spill inside to the hospital, with violent episodes that began outside continuing inside or the presence of law enforcement officers escalating tensions.

A February 2021 report from National Nurses United — a union in which both Kamara and Caldwell are representatives — offers another possible factor: staffing levels that don’t allow workers sufficient time to recognize and de-escalate possibly volatile situations.

COVID unit nurses also have shouldered extra responsibilities during the pandemic. Duties such as feeding patients, drawing blood and cleaning rooms would typically be conducted by other hospital staffers, but nurses have pitched in on those jobs to minimize the number of workers visiting the negative-pressure rooms where COVID patients are treated. While the workload has increased, the number of patients each nurse oversees is unchanged, leaving little time to hear the concerns of visitors scared for the well-being of their loved ones — like the man who aggressively yelled at the nurses in Caldwell’s unit.

In September, 31% of hospital nurses surveyed by that union said they had faced workplace violence, up from 22% in March.

Dr. Bryce Gartland, hospital group president of Atlanta-based Emory Healthcare, said violence has escalated as the pandemic has worn on, particularly during the latest wave of infections, hospitalization and deaths.

“Front-line health care workers and first responders have been on the battlefield for 18 months,” Garland said. “They’re exhausted.”

Like the increase in violence on airplanes, at sports arenas and school board meetings, the rising tensions inside hospitals could be a reflection of the mounting tensions outside them.

William Mahoney, president of Cox Medical Center Branson, said national political anger is acted out locally, especially when staffers ask people who come into the hospital to put on a mask.

Caldwell, the nurse in Kansas City, said the physical nature of COVID infections can contribute to an increase in violence. Patients in the COVID unit often have dangerously low oxygen levels.

“People have different political views — they’re either CNN or Fox News — and they start yelling at you, screaming at you,” Mahoney said.

“When that happens, they become confused and also extremely combative,” Caldwell said.

Sarnese said the pandemic has given hospitals an opportunity to revisit their safety protocols. Limiting entry points to enable COVID screening, for example, allows hospitals to funnel visitors past security cameras.

Research Medical Center recently hired additional security officers and provided de-escalation training to supplement its video surveillance, spokesperson Christine Hamele said.

In Branson, Mahoney’s hospital has bolstered its security staff, mounted cameras around the facility, brought in dogs (“people don’t really want to swing at you when there’s a German shepherd sitting there”) and conducted de-escalation training — in addition to the panic buttons.

Some of those efforts pre-date the pandemic but the COVID crisis has added urgency in an industry already struggling to recruit employees and maintain adequate staffing levels. “The No. 1 question we started getting asked is, ‘Are you going to keep me safe?’” Mahoney said.

While several states, including California, have rules to address violence in hospitals, National Nurses United is calling for the U.S. Senate to pass the Workplace Violence Prevention for Health Care and Social Service Workers Act that would require hospitals to adopt plans to prevent violence.

“With any standard, at the end of the day you need that to be enforced,” said the union’s industrial hygienist, Rocelyn de Leon-Minch.

Nurses in states with laws on the books still face violence, but they have an enforceable standard they can point to when asking for that violence to be addressed. De Leon-Minch said the federal bill, which passed the House in April, aims to extend that protection to health care workers nationwide.

Destiny, the nurse who testified in Georgia using only her first name, is pressing charges against the patient who attacked her. The state Senate committee is now eyeing legislation for next year.

Kamara said the recent violence helped lead her hospital to provide de-escalation training, although she was dissatisfied with it. San Leandro Hospital spokesperson Victoria Balladares said the hospital had not experienced an increase in workplace violence during the pandemic.

For health care workers such as Kamara, all this antagonism toward them is a far cry from the early days of the pandemic when hospital workers were widely hailed as heroes.

“I don’t want to be a hero,” Kamara said. “I want to be a mom and a nurse. I want to be considered a person who chose a career that they love, and they deserve to go to work and do it in peace. And not feel like they’re going to get harmed.”