Jackie Thomas was $29,134 in debt and in trouble with state regulators. She hadn’t slept in days. If a judge ruled against her, she’d fail the mothers who could only keep their jobs thanks to the 24-hour child care she offered.
This article was published on Saturday, May 1, 2021 in ProPublica.
Jackie Thomas pulled up to her child care center, Damion’s Place, picked up the mail and stretched out beside a baby on a giraffe-printed playmat. She opened a letter from state regulators who had sent over a motion in their case to shut her down. In the chaos of the past year, they’d found Jackie’s center in Overland Park, Kansas, out of compliance in small ways, like having a trash can without a lid, and larger ones, like being understaffed. A hearing was scheduled for Feb. 17, three weeks away.
As Jackie held the letter, a teacher delivered more bad news: She was planning to leave for nursing school, adding herself to the long list of staff Jackie had lost. Jackie ran a separate day care in her home, just across the border in Lee’s Summit, Missouri, but she relied on employees to operate Damion’s Place. If she didn’t hire new teachers fast, she’d be down to only one who was approved by the state: her 71-year-old mom, Bonnie, who’d stepped in to help.
“Good Lord, can y’all just throw one punch at a time?” Jackie said.
“For real,” Bonnie laughed from the other room. “They’re hitting you in the face.”
“Forget it,” Jackie sighed. She wore a blue T-shirt with the words “Don’t Try Me,” matching her spiky blue bob.
She’d barely settled into her wooden rocking chair when her phone rang. It was a mother, saying she’d tested positive for COVID-19 and was withdrawing her kid from the center. Jackie was used to hearing from parents who’d gotten sick or lost jobs. At the start of the pandemic, Jackie had 112 kids; now, she was down to 26. Before she could process the call, her phone rang again. It was another mom who’d been diagnosed with the virus; three more kids gone. In an instant, Jackie calculated, she was out $3,200 that month.
Jackie had run her home child care for nearly a decade when she’d opened Damion’s Place in February 2020. The center, which was awaiting its license, was her chance to present a quality option to working-class parents, who could usually only afford to leave their kids with relatives or in caregivers’ homes. She was proud to provide its amenities, with activities and curricula and meals, at prices families could pay. One day, if she could get enough kids, she hoped that her center would offer what most others didn’t: round-the-clock care that matched the rhythm of the modern workforce.
At 53 years old, Jackie was so confident in her vision, in her ability to meet the high demand, that she imagined herself on the verge of a big break. It seemed the need was everywhere: Most Americans live in child care deserts, where licensed facilities, if they exist at all, have little or no capacity for new kids. Jackie pictured her centers stretching across Kansas City, then the region, and eventually the country, with 24-hour services for the parents who needed them most. It was the legacy she planned to pass on to her own children, leaving a profit for them to live on. “This mind was created to generate income,” she said. “They can’t stop this seven-figure mind.”
It would have been a difficult business proposition even during normal times, in an industry plagued by thin profit margins and high staff turnover. Many families couldn’t afford to pay much, and government subsidies didn’t begin to cover the costs. The pandemic pushed providers to the edge: about 13% of day cares across the country have shuttered in the past year. President Joe Biden was promising a one-time injection of $39 billion in relief funds for the industry, and he was preparing to pitch the most ambitious reform in decades, aimed at creating affordable, quality child care that capped costs for parents and raised wages for providers. But since the details were still emerging, Jackie wasn’t sure how much of the hopeful talk coming out of Washington would translate into real support for businesses like hers.
Around 5 p.m., once the center had emptied of children, Jackie locked the doors, settled into her Nissan Versa and began to drive home. She was exhausted; she’d been caring for an infant overnight. She turned up some urban gospel, but it couldn’t quiet her rushing mind. She’d depleted her savings. She’d wracked up $29,134 in credit card debt. The center was hemorrhaging money every day. Even if she could avoid bankruptcy, there was still the matter of the hearing. If the judge ruled against her, she’d fail the parents, many of them single mothers, who told her they would lose their jobs without the flexible care she offered.
Under a darkening sky, she merged onto Interstate 435. She usually managed to find confidence in the future even during the most trying of times, and that optimism had propelled her for as long as she could remember. The primary ingredients of success, in Jackie’s view, were sweat and an entrepreneurial spirit. Plus, according to numerology, her “angel number” was 819, a sign of prosperity. Ten minutes into her drive, by the fast-food lights on Metcalf Avenue, Jackie fell asleep in the driver’s seat.
She found herself jolted awake, cars whooshing by. She clutched her wheel and swerved toward an exit. When her heartbeat finally slowed and she’d rolled down the windows, she was grateful she didn’t have children in the car but certain that something had to change. “Jesus, come on, come on,” she said, rocking in her seat. “I need your help.” She was becoming more aware by the day that she couldn’t keep this going much longer. Just give up, she told herself. It’s not going to hurt you. But Jackie couldn’t bear to let go.
It was one of Jackie’s twin grandsons, Damion Thomas, who inspired her child care business. She’d raised eight children and two grandkids when Damion and his twin brother, Trayvion, were born, filling her home with a thrilling ruckus. Trayvion revealed himself to be a cuddler, always wanting to be held, and Damion was a quiet, crawling explorer. Each night, when Jackie came home from work, she swung open the door and called out for her “dump trucks.”
In September of 2008, after Jackie’s son and the twins’ mom split up, Jackie was awakened by a phone call: Damion, who was 2, was in critical condition. By the time Jackie arrived at the hospital, he had died. His forehead was bruised, his eyes were blackened and his neck was scored with scratches. His mom had gone to work that Saturday and left the kids with her new boyfriend, DeWhite Cameron. He was sentenced to life in prison for beating Damion to death.
Jackie didn’t like to talk about her grief or wear it on her face. She’d learned to cope with distress by throwing herself into work. When a fire had destroyed her house, when she’d left an unsafe relationship, Jackie had burrowed into her jobs, ascending from a Price Chopper cashier to a regional manager at Church’s Chicken. After the death of her grandson, she resolved to venture into an industry she knew nothing about, opening a home day care that would welcome kids whose parents worked all hours. In 2010, she started by watching her own grandchildren in her house, and by 2014, “Mrs. Jackie’s” was open to the public. The “Mrs.” was aspirational. She wasn’t married, but she believed in the aphorism “Fake it ’til you make it.”
Once again, her house filled with the cries and squeals of new life. She loved watching the infants take their first steps, say their first sentences, expand their vocabularies; she grew most attached to the kids who started with her young. She had a knack for teaching them to spell their names, to say “please” and “thank you.” She was particularly proud that she’d taught one boy, at 9 months old, to kiss a girl’s hand as a way to say, “I’m sorry.”
But it wasn’t long before Jackie grew frustrated with what she saw as a two-tiered system. Working-class parents, she realized, were sending their kids to home day care, with varying degrees of oversight. More well-off people had the option to send their children to licensed centers, with highly trained staff and regimented schedules. On balance, kids in informal home settings are less likely to get reading and counting instruction and more likely to watch hours of TV. Though the federal government doesn’t monitor safety in child care, the most comprehensive national study of the subject, from 2005, found that the death rate, though low, was more than 14 times higher in providers’ homes than in centers.
Child care in America has long been divided along class lines. The first “day nurseries” were developed by philanthropic women in the late 19th century to provide minimal protection for poor children, whose mothers had no choice but to work while wealthier moms stayed home. The service was designed merely to keep them alive, not to educate them. The first “nursery schools,” on the other hand, were created in the early 20th century for middle-class families who could afford to spend money on the social and developmental growth of their kids.
Federal policy entrenched the divide. The only universal child care legislation ever to pass Congress was vetoed in 1971 by President Richard Nixon, who denounced its “family-weakening implications.” Many conservatives had also opposed the program on the grounds that it would further racial integration. Republican congressman John Ashbrook said that one of the worst elements of the bill was that “the socioeconomic and race mix of students would reach its greatest potential under this legislation.” Instead, Nixon signed into law a child care credit, allowing parents who paid enough in taxes to claim a modest deduction. The policy primarily benefited middle- and upper-class families.
By 1990, low-income parents could receive slim child care subsidies, but President Bill Clinton dramatically changed the program in 1996. In response to fears of welfare dependency, Clinton signed legislation that made employment a condition of receiving the assistance. But the subsidies were too low. Soon after, struggling parents began taking on more second-shift, third-shift and weekend jobs just to get by.
Jackie found that many of her parents were spending a third of their income on care. Some weren’t getting subsidies; though federal guidelines allowed anyone earning up to 85% of their state’s median income to receive the aid, it gave states latitude to restrict access. The Missouri program usually accepted new parents who made under 45% of the median income, or $29,976 for a family of three. States calculate their subsidies based on market rates, but providers like Jackie tend to set prices based on what nearby parents can afford. For some of Jackie’s kids, the government pays as little as $7.70 a day.
Jackie knew the finances would be hard, but she found herself dreaming of opening a licensed center for kids like hers as a bid to equalize care. Typical centers are open weekdays, 7 a.m. to 6 p.m., but Jackie figured that if she ran hers at all hours, she could bring in enough kids to set bargain prices for her parents. They were delivery drivers and nurses, waiters and cashiers, and their employers often required them to take on early-morning or late-night shifts. She’d charge $200 a week for toddlers and $265 for infants, but she was willing to accept a sliding-scale fee based on income.
By 2019, more than a decade after Damion died, Jackie had saved $60,000. She found a little schoolhouse in Kansas that used to be a Montessori academy, and she poured half of her savings into fixing it up: mulch for the playground, gates for the infants, costumes for dramatic play. She installed cameras to film every inch of the center so parents could tune in to check on their children. She advertised as “Mrs. Jackie’s Christian Daycare,” but she called it Damion’s Place. The center opened a month before COVID-19 was detected in Kansas.
After Jackie fell asleep at the wheel this winter, she tried not to think about the upcoming hearing, which would determine if she could keep the center open. The only person she’d told was her mother, Bonnie, who occasionally relayed guidance she’d found on the internet. “Sometimes God will slow you down so that the evil ahead of you will pass before you get there,” Bonnie read aloud one afternoon at Damion’s Place. “Your delay could mean your protection.” Lying on her stomach, Jackie nodded as two young boys took turns sliding across her back.
Jackie had never been in trouble like this with regulators, and she believed the pandemic had caused this mess. Last spring, as the virus spread across the Midwest, more and more mothers lost work in the shutdowns. The government pumped money into the subsidy program, but still, Jackie couldn’t enroll enough kids at Damion’s Place to make ends meet; she compensated by packing her home child care all day and all night. Because of the unpredictable schedules of her parents, who were now deemed “essential workers,” Jackie needed to rotate kids between locations depending on where she had the capacity. She hired staff to shuttle them back and forth in her green Dodge Caravan and she slept two or three hours each night, when her daughter, Yolanda, who lived in her basement, relieved her.
Jackie was so stretched, in part, because she couldn’t find the right people to run Damion’s Place. She posted positions online, offered shifts to out-of-work moms and extended job offers to cashiers at her local Save-A-Lot. But those who had chronic conditions like diabetes and hypertension didn’t want to risk exposure; others had to stay home with their own kids who were attending school remotely. Jackie paid up to $12 an hour, but Walmart and Target offered similar wages, and they included benefits. Child care staffers — almost all women, and disproportionately women of color — were some of the lowest-paid workers in the country; more than a quarter quit their jobs each year.
With the feeding, diapering and teaching duties falling more squarely on Jackie, she couldn’t keep up with the many rules that centers must follow. Child-safety advocates, prompted by day care deaths, have spearheaded regulations at the federal and state levels over the past decade. But advocates for providers say that the only way operators can reasonably meet the evolving rules is if the government supplies them with the money and technical support to do so. Instead, states almost always ask child care operators to cover the costs — of buying softer furniture, or bringing on consultants, or taking new training. When providers fall out of compliance, the primary response is to punish them.
By June, Jackie’s business was starting to fall apart. On a humid Tuesday morning, a Missouri inspector named Romena Fox showed up at Jackie’s home day care, unannounced. Romena rapped on the front door, but no one answered. All she could hear were the high-pitched screams of children. After 15 minutes, she called the police, who pounded on the door for another 10 minutes. When they peered through a window, they noticed a young girl climbing in and out of a playpen and two others jumping on the floor. They couldn’t see an adult.
Once they called her phone, Jackie answered and let them in. She said she’d been doing paperwork while sitting in her bedroom entryway so that she could see kids napping in each of the three rooms. She had separated the children by sibling groups for social distancing, but she’d broken the rules by using a bedroom that hadn’t passed inspection. She apologized. Romena and another inspector noted that Jackie had too many infants in her home and that a playpen was broken. A young boy told them that Jackie had been sleeping.
Jackie knew she could do better, and she hated that her competence had been called into question. Embarrassed, she wrote Romena an email. “I thought I told you that sometimes when I am in the back I cannot hear the door,” she said. She explained that she had too many infants because a mom had shown up and asked Jackie to watch her kids while she ran errands. She hated turning down those requests; she’d already learned that one mom, who could no longer afford Jackie’s care, was leaving her young kids home unattended. As required by law, Jackie had reported her to authorities.
When Romena started calling parents, none complained about the quality of Jackie’s care. Mallory Talbott, who manages a barbecue restaurant, said parents knew to call the house phone if no one answered a knock. Emily Smiley, who works for Walmart, said, “You got to multitask with kids. When is she supposed to have time? She’s 24 hours a day.”
Neither mother’s schedule or slim budget left them with other options for nearby child care. Emily had found Jackie after the state of Missouri decided that her boyfriend wasn’t a safe guardian for her three kids. Jackie’s hours were what had allowed Emily to take a management promotion at Walmart’s bakery, a job that required night and weekend shifts. She was convinced that, without Jackie, she’d lose her job, which meant that next would come her car.
Brittney Fleming was equally reliant on Jackie; when she worked the night shift loading packages for FedEx, her two boys slept at Jackie’s home. She also took community college courses during the day, and sometimes her boys went to Damion’s Place. She wanted a degree, and ultimately a job with reasonable hours. With so few 24-hour child cares around, she saw Jackie’s support as key to getting there.
As a result of the bad inspection, Missouri proposed placing Jackie’s home day care license on probation. “A slap on the wrist,” Jackie called it.
Across the border that summer, Kansas inspectors kept showing up at Damion’s Place as well. They found a rusty nail in the wooden fence, which was also three inches shorter than the state-mandated minimum height. They discovered a new program director whose paperwork had yet to be filed with the state; Jackie had requested the form a couple of days earlier, but she hadn’t gotten around to mailing it. She wasn’t staying up to date on the documentation, and on two occasions, for brief periods of time, she wasn’t staffed at the right ratio. She needed one teacher for every three infants or every five toddlers. Jackie had been operating on a temporary permit, and in August, regulators submitted their formal intent to deny her license.
If the administrative law judge charged with Jackie’s case ruled against her, she would lose her kids at Damion’s Place and the revenues that came with them. She’d still have to pay rent. And she’d have to turn away parents like Brittney who depended on her.
Four days before her Kansas hearing, Jackie pulled up to a rundown child care facility in Independence, Missouri, which hadn’t been used in years. She’d worked out a deal with its owner: If she handled the repairs, he’d start charging rent after she opened for business. She’d found it last summer, as a backup center in case Damion’s Place was shut down. Now, she was hoping that her contractors could get it done before the end of the week.
Jackie climbed the stairs to the boxy building, gripping the candy-striped railing. She grimaced at the pastel-colored bricks on the exterior. She wanted to paint the walls her favorite color, green, which meant “money” and “go.” She pushed open the heavy door and stepped into the foyer, where trash was heaped around her. “A lot of stuff,” she said. “We got a lot of work to do.”
Jackie had estimated the construction would cost about $6,000, but by now, it had snowballed into more than $30,000, the rest of her savings. She’d paid contractors to pour cement for the parking lot, lower the sinks to child height, lay a deck and patch the leaking roof. It was hard to keep track of everything left to do, and there wasn’t a simple list to follow. In the city of Independence, she needed approval from the building inspector, the health department, the fire department, the power and light department, the water department, the zoning department. It was one reason that child care experts didn’t expect new centers would pop back up once the economy recovered: They’re expensive to build and the bureaucracy overseeing them is a maze.
It was 7 degrees outside, and Jackie’s breath hung in the air as she fiddled with the thermostat, which didn’t seem to be working.
“Good morning,” said a man named Darrion Clark, whom Jackie had hired to fix up the place.
“You know something about furnaces?” Jackie asked, burying her hands in her pockets.
She walked around the center with purpose, in tall leather boots over red sweats. She glanced at the cracked paint on the hallway ceiling, mindful of inspections to come. “What do we do about this here?”
“You can just spray that shit with the texture,” said Darrion, miming it as he spoke. “Then you ain’t gotta worry about making sure it’s straight.”
Jackie rubbed the back of her head. She wondered whether the doors were wide enough.
“Thirty-five and three-quarters,” Darrion said, as he measured the entryway to the toddler room.
“I need 36 true and true,” Jackie replied. “When they come in here, you know they’ll be nitpicking.”
The afternoon sun cast long shadows down the main room.“The kids are gonna have a flippin’ good time,” Jackie said. “It’s gonna be real nice. Once I get it done.”
The problem, it appeared, was that the building was nowhere near done. She still needed a grease trap, emergency lights, a mop sink, a bottle sink and a prep sink for food, even though the city of Independence had told her that she wasn’t allowed to make food for her kids without a commercial kitchen. Jackie now wanted to get Yolanda to run a new business she’d start, Mrs. Jackie’s Catering Company, with a commercial kitchen and freezer trucks.
Yolanda, who was helping her mom ferry appliances, walked in, shivering. “It’s crazy out there,” she said, laughing about the cold.
Yolanda was worried about the project. She’d tried to warn her mother about taking on too much. One thing at a time, Yolanda repeated. At 35, she didn’t think she could move out of her mother’s basement; her mother didn’t know her limits, and Yolanda felt compelled to take on some of her mom’s load, “so her limit is part of my limit, too.” Even her 20-year-old son, Willie, had moved in to help them watch kids, and he was sleeping on an air mattress in the basement. Yolanda barely had any time. She worked 35 hours a week at Amazon, took high school courses online, and was learning to start a podcast, Spit Shit, so that one day, she, too, could be her own boss. Whatever hours were left she gave to her mom.
After Yolanda drove home, Jackie stood in silence in the shell of the defunct center she was hoping to resurrect. It began to dawn on her that she wouldn’t be able to open by her hearing date. Her backup plan wouldn’t be a backup at all.
“I think I’ll be all right,” she said.
Two days before her hearing, in her shaded home office, Jackie sat at her desk, which was strewn with fuzzy pens, an oversized calculator and several cell phones. They kept buzzing with notifications. A few moms texted saying they wanted to enroll their kids, and the fresh interest buoyed her spirits. She didn’t let on that Damion’s Place was on the line. She wanted to believe that she could make it work, that even if the center were shuttered, she’d find a way. Annette Ligon, whose daughter, S’Aniyah, was on Jackie’s weekend shift, called to explain that she now needed weekday care.
“Bring her back to me,” Jackie interrupted. “Boom, kick, bah.”
Annette had found Jackie in the middle of the night a couple of years earlier. She was a single mom with a Ph.D. in psychology, teaching at a university, and she had nearly lost her second job on the late shift at a Harley Davidson factory after her child care fell through. Now, she was counseling front-line medical professionals during the crisis. She sometimes pulled 90-hour weeks, and when she traveled to hot spots, she left S’Aniyah at Jackie’s for days on end.
“I’ll bring her to you tomorrow,” Annette said. “I don’t know what the rest of the week is going to look like.”
Jackie hung up and walked over to Mallory Talbott’s daughter, McKenna, who was standing in a playpen in her dim living room. McKenna had unzipped her footie pajamas and taken them off. “What are you doing?” Jackie asked her. “Haven’t we had this discussion? You can’t be showing your goods. You cannot. You are a lady.” McKenna stared at her blankly. Jackie gently pulled her pajamas back on as a Humpty Dumpty cartoon played on one of three TVs.
On the day before her hearing, Jackie didn’t bother to dress. In her floral nightgown, she typed out a new sleep observation form for Damion’s Place, an employee log, an updated menu. She designed and ordered new scrubs, emblazoned with her logo, for her staffers. She admired the uniforms like they were the future.
Jackie had been reading about Biden’s intentions to save the industry. They would take clearer shape in the spring with his American Families Plan, the most comprehensive proposal in the 50 years since Nixon’s veto. It would limit child care costs for working- and middle-class families to 7% of their income, ensure that subsidies covered the true cost of quality care and help fund higher wages for child care workers. The $1.8 trillion package, including landmark spending on universal pre-K and community college, would likely face challenges in Congress, and on the issue of child care, it hadn’t nailed down states’ roles in determining how the money would be spent. Another temporary aid bill would offer rescue funds to providers like Jackie and, for one year, increase tax credits for eligible parents, but it wasn’t enough to overhaul the system.
Once night fell, Jackie left her computer and sprawled across her living room’s leather sofa. She video-chatted with her youngest son, Isaiah, and marveled at the big house he shared with his brother.
“And I’m gonna go to the firefighter academy, so the next house is gonna be even better!” Isaiah said.
“You’ll buy me a big, beautiful house,” she teased. “What am I gonna do with the $600,000 house you buy me?”
She called her son Sedrick next and asked to hear his latest track. He was trying to make it in music, and Jackie had no qualms giving unsolicited advice.
“You need a different beat,” she said.
“Don’t want one,” Sedrick shot back.
“Not what you want, it’s what’s gonna sell,” Jackie said.
A little before 11 p.m., the doorbell rang. Jackie pushed herself off the couch and walked over to the entrance, where a UPS driver named Tannette Avery said, “Here’s the man.”
Jackie pulled 6-month-old Tommy in from the winter chill. She took off his jacket and set him in a playpen by her couch. Sucking his pacifier, he rolled over onto his stomach. Jackie flicked off the light, sat down and pulled a fleece over her legs. She had 10 hours until her hearing. But just as she rested her head back, Tommy started to whimper.
“Tommy Tom,” Jackie said into the dark night, “please don’t start.”
The following morning, Jackie let two kids into her house, passed them off to Willie, and then sat at her desk for her hearing on Zoom, wearing the same floral nightgown. Without money for a lawyer, she was representing herself, and she hadn’t prepared witnesses or questions. For two hours, the state’s lawyer walked through each inspection of Damion’s Place in precise detail. Regulators described a pattern of noncompliance, and as Jackie listened, she sucked back tears. She held her brief remarks until the end.
“I just want to say that I try my best,” Jackie said. “I have had a struggle with getting people employed because of the pandemic.” She explained that she was in the process of hiring a whole new staff, and she believed that they would be good. “Gotta admit, this is my first center, a lot of things I didn’t know. But rest assured, I am not trying to be out of compliance, and right now, feel I am in compliance. I enforce the rules better, made forms to enforce the rules better. There’s not much more for me to do.”
The judge concluded by saying that he wouldn’t make a decision straight away, but he promised to deliver one soon. Jackie signed off and lay her head in her hands. From the tenor of the call, she figured that the state would shut down her center. She’d just renewed her lease at Damion’s Place, and now she couldn’t get out of it. “Oh Jesus, I’m tired,” she said. “Two years of paying for a building I cannot use. Two years.” In the privacy of her office, behind a closed door, she allowed herself to sob, letting out a deep moan.
Her doorbell rang. A mother who worked at a grocery store had come to pick up her son. “Everybody have a good day?” she asked, as she wiped her feet at the door.
Jackie wasn’t prepared to say aloud what she was just beginning to understand.
“Mhhmmm,” she replied.
It would be another seven weeks before the judge would issue his decision. On April 7, he would deny Jackie’s Kansas license for Damion’s Place. Her backup center would not be ready. Jackie’s capacity would be limited to 18 children at her home child care in Missouri — six kids on each of her three shifts. She wouldn’t have room for Brittney, the community college student and nighttime FedEx worker, to bring her kids. Brittney would end up leaving her job to watch her children, after what she’d come to see as an “extended stay” in employment. Jackie would be too nervous to ask other parents how they’d fared in her shutdown. She would wonder if it was even possible to build an enterprise for these families.
For now, though, as the evening light waned in her office on the day of the hearing, Jackie got to work planning her next move. Her mind traveled to the future, its most comfortable place. Even though COVID-19 was surging, she believed that enrollment would soon improve. That the 3 million women who had lost jobs in the pandemic would return to work. That if she found just one more location, a backup for her backup center, she could keep all of her kids. Then, even more parents would come running.
She opened Zillow and traced her mouse down the border between Missouri and Kansas. She zoomed in on 46th street, on a stretch of rentals on the Missouri side. “These would be perfect,” she said. $2,700 a month. $1,750 a month. $2,200 a month. “Too much money. That won’t be happening.” She hit on a new listing, for $1,050 a month. A gray one-story on Liberty Street. “Hardwood floors. One bath.” She clicked her tongue. “This one’s doable.”
She started answering Zillow’s questions to request a tour for the following morning. Desired lease? 12 months. Household size? She laughed. Credit score? “Really?” Her credit was down from 750 to 631. “This is gonna be harder than I thought.”
She called a friend who worked in real estate. When he picked up, she put on a bright, commanding voice.
“Heyyy, Will Amazing,” she started. “I need you to find me a house.”
The vaccine rollout was meant to prioritize vulnerable communities, but four months of data shows healthier — and often wealthier — counties have been faster to vaccinate.
This article was published on Friday, April 30, 2021 in ProPublica.
As the U.S. rushes to vaccinate its population against the coronavirus, most counties with the sickest residents are lagging behind and making only incremental progress reaching their most vulnerable populations.
A ProPublica analysis of county data maintained by the U.S. Centers for Disease Control and Prevention shows that early attempts to prioritize people with chronic illnesses like heart disease, diabetes and obesity have faltered. At the same time, healthier — and often wealthier — counties moved faster in vaccinating residents, especially those 65 and older. (Seniors are a more reliable measure of vaccination progress than younger adults, who are less likely to have been eligible long enough to receive their second shots.) Counties with high levels of chronic illnesses or "comorbidities" had, on average, immunized 57% of their seniors by April 25, compared to 65% of seniors in counties with the lowest comorbidity risk.
A similar gap has also opened for all other adults. The one-third of counties with the highest chronic illness risk have on average finished shots for 15% of their 64-and-under residents, four percentage points below the average for the healthiest one-third of counties.
In counties with high rates of chronic disease, residents are more likely to die prematurely from heart or pulmonary diseases, diabetes or illnesses related to smoking or obesity. Those conditions also increase a person's risk of developing severe COVID-19.
People with chronic illnesses are especially important to vaccinate because their coronavirus infections are more likely to end in hospitalization and death, said Janet Baseman, an epidemiology professor at the University of Washington. If counties with high comorbidities remain behind, she said, "then we are not accomplishing our objective, as communities or as a nation, of saving lives."
In the four months since public vaccinations began, clear disparities have emerged in how quickly the richest and poorest counties have delivered shots to their residents. Multiple health experts and officials say the numbers underscore a key strategic misstep under the Trump administration, which asked state and local governments to prioritize people with illnesses that would increase their chances of hospitalization or death, but provided no additional funding to support the efforts.
Many states chose a simpler approach, opening vaccine appointments to everyone 65 and older with minimal on-the-ground outreach to people with chronic illnesses. "It made some states go a little bit faster," said Dr. Grace Lee, a member of the CDC's Advisory Committee on Immunization Practices and an infectious diseases physician at Stanford Children's Health. "But I think it really increased the inequities early on."
When vaccinations started in December and January for the general population, the federal Department of Health and Human Services distributed free doses and supplies, but almost no money or staffing to administer the shots. State and local health officials had to decide who would first be eligible for the small amounts of vaccine then available and how to get doses into arms. They also had to watch for interlopers — many of them young, white and from other locations — who booked appointments they didn't qualify for.
In counties with more chronic illness, identifying the neighborhoods and housing complexes where residents or critical workers most need the shots — and then actually getting them to accept vaccinations — can be complicated, time-consuming work. Health officials in several counties with high rates of chronic illness said they are making slow progress by focusing resources on small events and mobile teams instead of on sprawling mass vaccination sites.
ProPublica focused on comorbidities because they are directly related to increased risk of developing severe COVID-19. People with lower incomes are more likely to have comorbidities; urban counties with high average incomes tend to have fully immunized a larger share of their older residents than other counties. In addition to income, the analysis looked at the urban and rural divide, age demographics and differences between states' overall vaccination rates.
While communities of color have disproportionately high rates of chronic illness nationally, the analysis found no relationship between counties' racial demographics and coronavirus vaccination rates.
The rollout has largely relied less on government outreach than on individual initiative. People with flexible schedules, transportation and regular access to the healthcare system have been better able to get appointments on their own or with help from family and friends. Those with less support have fallen behind.
Separately, surveys by the CDC last year indicated that adults with underlying medical conditions were less interested in getting the vaccine than healthier adults. People surveyed who said they were unlikely to get vaccinated most often cited concerns about side effects and safety.
To date, more than 98 million people in the U.S. — including 37 million seniors — are fully vaccinated against the coronavirus, while another 150 million adults have yet to receive a shot. During an address to a joint session of Congress on Wednesday, President Joe Biden heralded the vaccination effort as "one of the greatest logistical achievements" in the country's history.
The push continues even as demand for shots appears to be declining, said Michael Osterholm, director of the Center for Infectious Disease Research and Policy at the University of Minnesota.
Providers injected more than 21.7 million doses during the second week of April, according to CDC data, as the supply of vaccines from Pfizer, Moderna and Johnson & Johnson increased significantly. That number declined to 19.2 million shots the next week, and preliminary figures indicate immunizations dropped even more sharply last week. (Federal authorities temporarily paused use of the Johnson & Johnson vaccine for 10 days to study a small number of blood clot cases potentially related to the shot. It has since been cleared for use.)
There probably aren't yet enough fully vaccinated people in the U.S. to protect against another surge, Osterholm said, especially with the more transmissible coronavirus variants now prevalent. In Michigan, new cases again soared in April, setting records for daily COVID-19 hospitalizations.
"We're not out of the woods yet in this country," Osterholm said. "What happened in Michigan could still happen in a number of other states out there. Even with the level of vaccination they've had and the previous infections, look what still happened."
Reaching the most vulnerable has been a top concern for many of the poorest cities and counties since vaccinations began.
In Baltimore, COVID-19 caused far more severe illness and death in the majority-Black city's communities of color, where people with chronic illnesses are more common, according to Dr. Letitia Dzirasa, the city health commissioner. During the first month of the vaccine rollout, the Baltimore health department realized it needed different tactics for immunizing its seniors.
The city of Baltimore has the highest rates of diabetes, smoking and obesity of the seven counties in its metro area, and its premature death rate is nearly double that of its neighboring counties, data from the National Institute of Environmental Health Sciences shows. It ranks among the nation's most at-risk jurisdictions from chronic illness. Other parts of the region, like the more affluent nearby Howard County, are among the healthiest.
CDC data shows just 55% of Baltimore City's seniors were fully vaccinated as of April 25, 15 percentage points lower than the rate for residents 65 and older in larger Baltimore County, which surrounds the city.
Counties in the Baltimore Metro Area With the Lowest Vaccination Rates Among Seniors Have Some of the Highest Health Risks
Within Baltimore, Dzirasa said, the pandemic hit hardest in Black neighborhoods on the city's east and west sides, where residents have long struggled against discrimination, poverty and chronic illnesses. "Unfortunately, we've seen the same thing again with vaccination rates," she said.
The city health department knew that many of its most vulnerable seniors would have no transportation to vaccination sites, and that their senior living centers were less likely than facilities in wealthier communities to have relationships with pharmacies to secure doses.
In January, Dzirasa said, her staff partnered with hospitals and pharmacies to create mobile vaccine teams that could deliver shots directly to those most at risk of severe COVID-19.
The first step was to win residents' trust with visits to centers from community health workers, who explained the vaccines, provided reassurance and scheduled appointments. The teams identified 117 senior living centers and have immunized residents one by one at almost every facility over the past three months.
"It's definitely a slower approach," Dzirasa said. "At these events, we're doing anywhere from 75 to 150 people, tops."
Baltimore has multiple mass vaccination sites that can each provide from hundreds to thousands of shots a day. A couple of months ago, all site appointments were booked, and ineligible people had to be weeded out, Dzirasa said. Now, those spots are increasingly unfilled, and Dzirasa expects gradual progress going forward.
The disparity in vaccination rates between counties with high rates of chronic illness and the rest of the country is partly the result of the Trump administration's decision not to invest federal dollars in vaccine sites at the beginning, argues Lee.
"They launched this massive campaign and were like, 'Good luck, you're on your own,'" Lee said. "And not only do you have to deliver a very complicated series of vaccines, but on top of that we expect you to address inequities, all without any additional support."
The Biden administration set up several mass vaccination sites in high-risk communities in February and has now sent federal workers, equipment or funds to operate more than 400 vaccination sites nationwide. But many counties with high rates of comorbidity are still working to make up for a slow start.
The winter COVID-19 surge was peaking when vaccine doses started to arrive in Wyandotte County, part of Kansas City's urban core. Small deliveries containing about 2,000 doses arrived each week from the federal government, said Dr. Erin Corriveau, the county's deputy medical officer.
At first, only healthcare workers and nursing home residents qualified to be vaccinated. Then, on Jan. 21, Kansas Gov. Laura Kelly opened eligibility to everyone 65 and older, including more than 20,000 seniors in Wyandotte County.
"We're going, 'Oh my God, that's a huge number of people,'" Corriveau recalled. The county decided to set its own eligibility rules, since it was still receiving just 2,000 doses a week.
Most new COVID-19 cases at the time were young adults. To help drive down case numbers, Corriveau said, the county temporarily narrowed eligibility to just residents 85 and older while adding critical workers whose jobs exposed them to greater infection risk.
Wyandotte County opened the shots to all seniors a few weeks later as case numbers dropped. But the demand for shots was modest, Corriveau said, especially compared to the clamor in other parts of the country, where older Americans struggled to find providers with available doses.
The county now runs three mass vaccination sites located on bus routes, with assistance from the Federal Emergency Management Agency. It keeps pharmacies stocked with vaccines, and dispatches "drop teams" to administer shots at small neighborhood operations. Doses are plentiful, but willing recipients are scarce. Corriveau said many of the county's seniors are wary about the vaccines' safety and have been unwilling to get the shots at large, impersonal sites.
"We've tried to make this vaccine as available as humanly possible," she said. "We're incentivizing vaccines with giveaways and food boxes and we're doing Saturday hours and expanding our evening hours."
Despite those efforts, only 56% of seniors in Wyandotte County were fully vaccinated as of April 25. A few miles south, in Johnson County, more than 83% were immunized.
The neighboring jurisdictions have little in common with each other. Wyandotte, meanwhile, stands out as being more diverse, with residents who suffer from far more chronic illness. Wyandotte's rate of premature death is double Johnson's rate, according to NIH data.
Tami Gurley, associate professor of population health at the University of Kansas Medical Center, said Johnson County has longstanding advantages that likely helped its residents get vaccinated so quickly.
"You have people with time, who can get on computers and sign up for multiple lists," Gurley said. "They all have their own transportation, nobody's relying on public transportation, it's all private cars out here."
The university medical center where Gurley works is located in Wyandotte and cares for its residents, she said. But many of its health workers live in other parts of Kansas City, including Johnson County. "That is where the doctors live, and the professors, and the people who tend to be more pro-vaccine to start with," she said.
Wyandotte's health officials are trying to reassure residents that the shots are safe and that communities of color can trust the county health department. "Frankly, there have been major, major issues of trust," Corriveau said of residents' view of local agencies, "which are warranted."
She and her colleagues are increasingly asking trusted community leaders to stand in for epidemiologists. Throughout the pandemic, Rev. Tony Carter, Jr., senior pastor of Salem Missionary Baptist Church, has encouraged his congregation to test for the virus, follow health protocols and, in recent months, get vaccinated.
Carter's church volunteered to host a Saturday neighborhood vaccine event on April 17, and nearly 50 people signed up for appointments to get the Johnson & Johnson shot. But several days before the event, federal authorities paused use of that vaccine as they investigated six cases of serious blood clots among the 6.8 million people who had received it. (The U.S. resumed use of the Johnson & Johnson vaccine without limitations on April 23.)
The county switched to another vaccine, but half of the recipients canceled their appointments. Carter reassured his congregants that the vaccine would offer a way of eventually reuniting with family. About two dozen people kept their appointments and received their first vaccine dose. "Most of those people stayed because of their connection to the church," he said.
A Note on Methodology:
ProPublica analyzed county-level vaccination data from the Centers for Disease Control and Prevention, looking for disparities in immunization between jurisdictions at high risk of severe COVID-19 and those with comparatively lower risk.
ProPublica used the comorbidities measure from the National Institutes of Environmental Health Sciences's Pandemic Vulnerability Index to classify counties' level of chronic illness. The one-third of counties with the lowest comorbidity values were categorized as "low comorbidity" and the one-third with the highest comorbidity values as "high comorbidity."
The analysis used data on counties' per capita income and racial demographics from the U.S. Census Bureau's 2014-2018 American Community Survey 5-year estimates and the National Center for Health Statistics' Urban-Rural Classification Scheme to categorize counties as urban or rural and to identify counties within metropolitan statistical areas.
The CDC only releases county data on completed vaccinations — people who have received both shots of a two-dose series, or one shot of Johnson & Johnson vaccine. The data does not include the number of people with comorbidities who have completed vaccinations. ProPublica focused its analysis on the 65 and older population because it has been eligible longest. The completed vaccination rate for seniors is a more reliable measure than for younger adults, which includes many people who have not been eligible long enough to receive their second shot. Further, seniors are more likely to have chronic illness and elevated risk of severe COVID-19.
The CDC does not provide county-level data for Texas and Hawaii, and ProPublica excluded Colorado, Georgia, New Mexico, Virginia, Vermont and West Virginia from its analysis because more than a quarter of those states' immunization records were incomplete.
Florida is one of two states that shield doctors and hospitals from most legal actions arising from births that go catastrophically wrong.
This article was published on Monday, April 26, 2021 in ProPublica.
By Carol Marbin Miller and Daniel Chang, Miami Herald
Ashley Lamendola was still a teen when medical staff at St. Petersburg General Hospital delivered the awful news that would change her life forever: Her newborn son, Hunter, had suffered profound brain damage and would do little more than breathe without help.
"It was like an atomic bomb went off in my life," she said.
Lamendola believed the hospital was partly responsible for Hunter's birth injuries. But Florida is one of two states that shield doctors and hospitals from most legal actions arising from births that go catastrophically wrong. Lamendola filed a lawsuit against St. Petersburg General anyway, and when it appeared she was gaining traction, the hospital advanced an extraordinary argument.
It suggested that Hunter's mother was not acting in her son's best interest and that a critical decision about his future care should be put in the hands of an independent guardian and a judge. Lamendola, attorneys said, was pursuing her own self-interest by refusing to participate in the quasi-government program that compensates the families of children injured at birth.
Under the program, known as the Birth-Related Neurological Injury Compensation Association, or NICA, the state provides $100,000 upfront and pays for "medically necessary" care for the child's lifetime. In exchange, parents give up their right to sue hospitals and doctors, lawsuits that can result in judgments or settlements in the tens of millions of dollars.
By choosing to "pursue her own speculative, complicated civil lawsuit" rather than permitting her son to accept his "vested" NICA benefits, Lamendola was trying to profit from Hunter's injuries, St. Petersburg General attorneys argued in a court filing. They underscored the words "her own."
Had she accepted Hunter's inclusion in NICA, "the Mother would be unable to pursue her own civil lawsuit, seeking her own separate monetary damages for the Child's injuries," the lawyers added.
"You carry a child for nine months, and then you finally get to hold them — eventually in my case," said Lamendola, who was employed as a customer service rep at an AutoZone when she gave birth. "And you take care of their every want and need, and you put a child before you. I mean, once you have a child, there is no more you. It's them. It's us. It's that baby that needs you and needs everything from you.
"I didn't understand how somebody who wasn't me could know what he wants and needs. I knew every sound, every movement, every seizure that he had," Lamendola said. "And to think that somebody thought they knew better than me. It was wild to me."
The battle between parents like Lamendola and hospitals like St. Petersburg General can seem like a gross mismatch: Lamendola was a single mom who made $10.50 an hour and lived with her mother. HCA Healthcare, which owns St. Petersburg General, is one of the nation's largest for-profit hospital chains, with 180 hospitals, 280,000 employees and revenues of $51.5 billion in 2020.
For hospitals facing stunningly high settlements or verdicts, NICA, the state's no-fault program, is a valuable legal tool — a club to bat away expensive lawsuits. At the cost of $50 per live birth, hospitals can protect themselves from multimillion-dollar judgments.
Paolo Annino, who heads the Children's Advocacy Clinic at the Florida State University College of Law, said attempts to restrict a parent's authority through the appointment of a guardian are unusual: In child welfare disputes, for example, parents must be found unfit by a judge before being stripped of their right to decide what's best for their children.
"What we have here is a scenario where there's no allegation of offending parents at all," he said. "The parent is, with very few exemptions, the one who makes the child's healthcare decisions."
NICA came under fire this month after a series of reports by the Miami Herald and the investigative reporting newsroom ProPublica. Families complained that the $100,000 grant — unchanged since 1988 — is inadequate, and that payments for medical procedures or equipment are routinely slow walked or denied entirely. After the articles were published, state leaders professed outrage and promised a comprehensive fix to the program.
Here is how NICA works: After a baby is born brain damaged, parents can file a lawsuit against the hospital and doctor. The defendants then can ask the judge to pause the suit and order the parent to file a NICA claim. That petition is heard in a separate venue by an administrative judge, who then decides if the case is "compensable." Ultimately the administrative judge determines whether NICA applies or if the parents can resume their lawsuit.
To qualify for NICA, in addition to having physical and cognitive impairments, a child must weigh at least 2,500 grams (5.5 pounds) at birth and be delivered in a hospital. When children don't fit those criteria, parents retain the ability to sue.
For the roughly 440 Florida children covered by NICA over the past 33 years, some of them now deceased, the program wasn't really a choice. It was a mandate, with a few exceptions.
One exception is when OB-GYNs fail to pay a $5,000 annual assessment. Nearly 1 in 4 licensed obstetricians statewide does not pay. Another is when a hospital doesn't pay its $50-per-birth fee.
Parents can also argue that they weren't properly notified by their hospital or doctor of their participation in NICA with enough lead time to choose another provider. When parents like Lamendola attempt to invoke these exceptions, the fight can become fierce — and expensive.
Both the hospital and Lamendola's obstetrician, Christina Shamas, declined to discuss Hunter's case with the Herald.
One of the hospital's lawyers, Jay Spengler, wrote in an email to the Herald that, for children who qualify for NICA compensation and coverage, "it is something that should be carefully considered, as it provides a child affected by severe birth-related neurological injuries a lifetime of necessary and reasonable medical services."
In a deposition, Shamas defended her performance that day, saying that, as the "difficult" delivery progressed, she believed at that point that Hunter would be born just as quickly with a vaginal delivery — and the aid of a vacuum device — as he would a C-section.
Though Hunter's heart rate declined significantly several times during the 80 or so minutes right before he was born, the fetal heart monitor also showed that it accelerated again, too, she said.
"This does not necessarily mean a compromised baby," Shamas said.
Shamas also said that Hunter's heart rate would improve when nurses administered oxygen to his mother, repositioned her in bed and gave her fluids.
Shamas said she took all the necessary steps to ensure Hunter was born healthy.
Floppy, Silent, Alive
It's unclear how often lawyers representing doctors and hospitals accuse the parents of brain-damaged children of selfishness in an effort to force them to accept NICA benefits. Requests for guardians can occur anywhere in a family's legal journey: administrative court, trial court or appeals court.
Richard Milstein, a past president of the Dade County Bar who has been appointed guardian ad litem in hundreds of disputes, said he was aware of no statutory provisions governing the appointment of guardians in NICA cases.
Generally, judges have discretion over whether to appoint a guardian, though Milstein said judges often rely on guardians to be their "eyes and ears" on matters involving litigants who can't make decisions for themselves.
But when hospitals and doctors "question the wisdom" of parents making decisions about their children, "it is an offensive concept," said Michael Freedland, a Broward attorney who represented Lamendola.
"It should send chills down the spine of every parent out there who is caring for a perfectly healthy child, or one who has special needs," he said.
In its review of 1,238 NICA claims at the Division of Administrative Hearings, the Herald examined in detail 10 such cases but did not find any in which a guardian recommended a family be required to accept NICA compensation.
In one case, an Alachua circuit judge appointed a guardian ad litem to represent the interests of Nazyrah Jones, an Ocala child who suffered permanent brain damage when her heartbeat "essentially flat-lined" during delivery on May 13, 2008, a lawsuit alleged. Nazyrah's guardian wrote in a 2011 report that "it would be in Nazyrah Jones' best interests that this case proceed as a medical malpractice lawsuit."
A Central Florida hospital told Ninoshka Rivera, too, that it knew what was best for her son, Kevin Terron-Otero. And what was best was NICA.
Due to oxygen deprivation, Kevin was born floppy and silent, but alive, on Nov. 4, 2009. The hospital and doctors thought it was a classic NICA case, though Rivera wanted to seek compensation through a lawsuit. As the process played out, the hospital asked an Osceola County Circuit Court to appoint a guardian to weigh in.
In a court brief, the hospital said it was concerned about the well-being of the child, fretting over "the staggering potential for loss to this child" if Rivera persisted.
The judge did appoint a guardian, but the guardian did not recommend that Rivera's son be forced into NICA, freeing her to sue.
Rivera settled with the hospital's insurer for $1 million. She is still in litigation with three doctors and two medical practices that have denied wrongdoing, court records show.
Luis Jimenez and Priscilla Franco experienced a similar fight.
The couple's 2016 NICA petition was filed "under protest," arguing that NICA's lawsuit ban was unconstitutional. For its part, NICA determined the injuries to their child compensable in March 2017.
The parents continued to resist, alleging in August 2018 that son Dallas received substandard care in a manner that was "willful and wanton." That's another exception, though rarely used, to escape NICA.
In this case, it worked, enabling the parents to pursue their lawsuit in Miami-Dade Circuit Court. The hospital then asked the judge to appoint a guardian, with the familiar argument that the parents had demonstrated a conflict of interest with their son by turning down NICA's guarantees. That request was rejected.
The malpractice litigation remains pending.
And when Sandra and James Shoaf spurned NICA's one-time $100,000 payment and fought to pursue their malpractice suit, a hospital pointed out that their two-year separation — divorces are common among the parents of severely disabled children — left their daughter, Raven, especially vulnerable to her parents' self-interest. The family was allowed to reject NICA benefits, and the hospital where Raven was delivered eventually settled with the family for $13 million, insurance records show.
Lucinda Finley, a University of Buffalo law professor whose expertise includes tort and equal-protection law, said accusing parents of seeking to profit from their children's injuries is a form of emotional abuse — compounded by the fact that parents and their children are the victims of someone else's potential negligence.
"Simultaneously devastating and enraging, infuriating," Finley said. "I can imagine the parent saying this hospital whose doctors are responsible for killing or seriously injuring my child now has the audacity to say I don't care about my child."
She added: "These are not parents who are suddenly seeking to improve their lifestyle. These are parents who are suddenly faced with the crushing financial needs of seriously disabled children."
Just Keep Pushing
An emergency C-section might have saved Hunter Lamendolafrom being deprived of oxygen and suffering permanent brain damage — and spared his mom from a lifetime of hardship, Lamendola said in her lawsuit. She said she had urged her obstetrician, Shamas, and the nurses who delivered Hunter on June 27, 2012, to initiate a cesarean section. Her mother, grandmother and aunt all had required C-sections to give birth.
Lamendola, then 19, soon began to suspect that Hunter was in danger, she testified in an August 2016 deposition. Nurses repositioned her several times, "propped" her up with a pillow and administered oxygen. They said they "couldn't see the baby" on a fetal heart monitor, she said.
"I was worried about Hunter," Lamendola said in the deposition.
"Every time I said I wanted a C-section, it seemed like nothing was done about it," Lamendola said. "So I didn't feel like I was really heard."
The nurses, Lamendola said, were "dismissive" of her — at one point telling her to "just look at this smiley face on the wall and forget about" her pain.
When Lamendola asked again and again for a C-section, she was told to keep pushing, she said.
"Dr. Shamas said, 'You need to continue pushing. You need to push with all your might,'" Lamendola recalled in her deposition. After Hunter emerged, Lamendola gushed blood. "Blood went all over the room," she said. "It flung everywhere."
Hunter was transferred quickly to the neonatal intensive care unit at All Children's Hospital — now Johns Hopkins All Children's — also in St. Petersburg. Lamendola did not get to touch her newborn son or catch more than a glimpse of his face behind a plexiglass incubator on wheels.
The emergency medical team from All Children's that had rushed in to transport Hunter from the St. Petersburg General Hospital delivery room asked repeatedly if Lamendola had seen him.
"They said, 'We want to bring him by your bed, so you can see him just in case it's the last time,'" Lamendola recalled in an interview, choking back tears.
Lamendola said St. Petersburg General's hospital staff moved her to a room beyond the nursery to spare her the sound of bawling babies and joyful moms.
Nurses taped a picture of Hunter to the wall, Lamendola said.
A day passed before Lamendola could see Hunter again — at All-Children's — then a week before she could hold or touch him. All Children's scheduled a meeting in a conference room adjacent to the neonatal intensive care unit, with a large wooden table surrounded by empty chairs, and a television cart and white board off to the side.
The first indication of where the meeting was going: a box of tissues on the table. The second: The hospital had arranged for a pastor to be present.
Hunter's intensive care doctor broke the news. Hunter had sustained "global brain damage."
"All the baby books don't talk about that," Lamendola said in an interview.
"Everything that I had planned or hoped. I didn't know what could or would be possible, at that point."
Hunter is blind. He cannot talk. He has reflux and cannot swallow. And he suffers almost daily seizures.
Lamendola filed the malpractice suit against Shamas and St. Petersburg General on April 24, 2013. The lawsuit was halted in July. Lamendola also was ordered to file a NICA petition.
On March 11, 2014, NICA told an administrative judge that Hunter's injury was compensable. But the following August, the judge, Susan Belyeu Kirkland, ruled that Lamendola could reject NICA benefits because St. Petersburg General had failed to give her proper notice of its participation in the program.
Such notice can't be given when a mother is already in labor and unable to choose another doctor.
"The policy of St. Petersburg General Hospital was to provide the NICA notice only when the patient [arrived] at the hospital and is admitted as an inpatient for delivery of her baby," the judge wrote. In other words: too late for a mom to find another hospital.
The ruling opened a door for Lamendola to exit NICA. St. Petersburg General promptly moved to shut it.
With the dispute now back in Pinellas Circuit Court, St. Petersburg General asked for appointment of the guardian, arguing Lamendola could take millions of the hospital's money — and then walk away from her son when he got older.
"The child is vulnerable given the Mother's limited duty to only support the Child until the age of majority," the hospital wrote. The court pleading underscored the word only.
Vivek Sankaran, director of the Child Advocacy Law Clinic at the University of Michigan Law School, noted that the hospital itself had a conflict of interest, since it would be off the hook legally and financially if Hunter became a NICA client.
"The law is clear that someone does not get to substitute judgment unless there is proof that you have fallen below a more objective standard of harming your child in some concrete, identifiable way," Sankaran said. "It can't simply be 'we disagree with your assessment of what's best for your child.'"
"The law builds in protection for us to disagree on matters of child rearing," he added. "That's what the constitutional decisions have always held."
St. Petersburg General, through its insurer, would ultimately pay Lamendola $9.5 million to settle the case — after spending nearly $1.2 million fighting her, insurance records show. Shamas' insurer paid another $250,000 to the family — after spending $400,000 in litigation.
According to her attorney Freedland, Lamendola is not allowed to discuss the settlements.
Devotion and Pediasure
Now 8, Hunter's typical day begins at 6:30 a.m., when his mother prepares his breakfast: Pediasure, a liquid mixture of vitamins, minerals and protein, pumped directly into his stomach and small intestine through a plastic tube.
At 9 a.m., Lamendola gives Hunter his meds. About a half-dozen of them, sometimes as many as nine. At 9:30 a.m., she disassembles Hunter's wheelchair and loads it into the car for occupational therapy at 10, followed by feeding therapy at 11 a.m. Lunch is at noon — more Pediasure in the pump — followed by 30 minutes in a contraption that builds muscle in Hunter's paralyzed legs. Then a half-hour listening to the television, which blindness prevents him from seeing.
Lamendola's mother takes care of Hunter when Lamendola is at work.
Hunter is more like a patient than a little boy, said Lamendola, who is more of a caregiver than a mom.
"It's hard to be a mom now, because I have to be a therapist. I have to be a nurse. I have to be a doctor. I have to be everything that I should not have to be for him," Lamendola said in a deposition. "I have to be a secretary to make all the appointments and cancel appointments when he's sick."
Hunter now has a little brother, Levi, who is a toddler.
"He is like a little Mama Bear to him," Lamendola said in an interview. "When Hunter has a seizure, he rushes over and holds his arm and checks on him. When his feed runs out, starts beeping, he runs over and points at it to tell us to turn it off. He's very protective of Hunter."
Before the birth of her second child, Lamendola insisted that her new obstetrician agree in advance to a C-section. And she found a doctor who didn't participate in NICA.
"Since I had Hunter — and I'm basically his advocate, and I am basically his words — I have learned to speak up for myself and say whatever I have to say," Lamendola said. "I honestly don't care anymore if I'm nice about it. I'm going to say my truth."
Bills in the Florida House and Senate would increase benefits for families of brain-damaged babies, add parental representation to the program’s board and create an ombudsman, following investigative stories by the Miami Herald and ProPublica.
This article was published on Thursday, April 20, 2021 in ProPublica.
By Carol Marbin Miller, Daniel Chang, and Mary Ellen Klas, Miami Herald
Florida lawmakers backed a series of sweeping reforms Monday to a controversial state program that protects doctors from medical malpractice lawsuits by limiting compensation for children born with catastrophic brain damage.
Legislation to overhaul the Birth-Related Neurological Injury Compensation Association was approved unanimously Monday afternoon by committees in both chambers of the Florida Legislature: the Senate Appropriations Committee and the House Judiciary Committee. From there, the bills head to the floor of the Senate and the full House.
NICA, as the program is called, came under fire this month when the Miami Herald, in partnership with ProPublica, began publishing a series of stories detailing the plight of families in the program, some of whom say they are forced to plead for medical care and services their children need.
Parents whose children are accepted into NICA receive a lump sum of $100,000 from the program, a figure that has not changed since its inception, and a promise of “medically necessary and reasonable” care for the lifetime of the injured child. By shielding doctors and hospitals from liability for such injuries, NICA reduces malpractice insurance premiums for physicians — the law’s stated intent when Florida legislators created the program in 1988.
Among the reforms endorsed by the committees: increasing the lump-sum payment to $250,000; adding at least one parent of a covered child, as well as a children’s disability advocate, to the NICA board of directors; creating a position for an ombudsman who would advocate for families; money for mental health counseling for parents; and statutory language requiring NICA to cover doctor, hospital and other medical costs that the program currently shifts to Medicaid, the taxpayer-funded insurer for low-income and disabled Floridians.
Lawmakers in the House and Senate heard testimony from parents who expressed gratitude to NICA for helping them face hardship — as well as from parents who said the program wears them down by questioning and denying requests for care.
The obscure state program has amassed nearly $1.5 billion in assets while delaying or denying help to some families, all of whom were barred from pursuing lawsuits against the doctor or hospital that delivered their child.
Kenney Shipley, NICA’s executive director, said she supports the reforms approved by the House Judiciary Committee. But Shipley, who has led NICA since 2002, urged lawmakers to oppose one provision: a measure forcing the program to pay first for doctors, hospitals and other medical care instead of serving as the “payer of last resort” behind Medicaid.
“That particular provision will most likely impair NICA,” Shipley said.
While Shipley defended the program, parents whose injured children are covered by NICA testified about their personal experiences.
Charity Butler, the mother of a 6-year-old boy, Grit, whose care is subsidized by NICA, spoke in both legislative chambers, bringing with her a thick binder of documents she said she needed to provide to program administrators when seeking reimbursement for her son’s care.
“That is hours upon hours upon hours of tears and work and pushback,” Butler said in the House chamber as she held up the binder.
“NICA is failing families, namely by the manipulative culture of claims denial that uses bureaucracy to stymie families from access to the funds that they need,” she said.
Butler said she pays $10,000 out of pocket each year to subsidize nursing care for her son because NICA’s reimbursement rate for in-home nursing care is so low that she can’t hire qualified nurses.
Butler said she wanted the program to “operate with transparency and treat parents with dignity.” She added: “Ours is an exhausting way of life.”
Jayme O’Connell of Old Town, 40 miles southwest of Gainesville, said she is grateful for NICA but urged lawmakers to make the program more responsive to parents and families rather than the interests of doctors, hospitals and insurance companies.
O’Connell brought her 4-year-old daughter, Ivy, who is in the NICA program. Ivy’s father, Ian Kleiner, and Ivy’s brother and sister were also there.
Speaking in both chambers, O’Connell asked legislators to help make the approval process easier for families because NICA currently requires letters of medical necessity, denials from insurers and other documentation before it will approve many expenses.
“Our No. 1 ask,” she said, “is that our children become the No. 1 priority in NICA — not the doctors, not the hospitals and not the shareholders. ... Treat our children No. 1.”
Rock and Shawna Pollock of Anna Maria Island, on the Gulf Coast, spoke in defense of NICA, telling lawmakers they had learned to navigate the program.
Rock Pollock called NICA “the best thing” that ever happened to his son, Rock Jr., now a teenager, and he credited doctors and therapists with knowing “how to write” letters of medical necessity that will persuade the program to cover claims for his son’s care.
Michael Devine, whose daughter Cyra was accepted into NICA in December 2011, said many parents of catastrophically brain-injured newborns are misled by attorneys who urge parents to resist inclusion into the program, promising to seek a lucrative settlement or verdict in the courts.
Devine said the administrative process of applying for NICA is more efficient and less contentious than a civil lawsuit.
“Going through one of these litigation processes is scary,” he said in the House committee hearing. “The NICA process is not.”
Several lawmakers in both committees had done research of their own and expressed dismay — even outrage — over the way families said they had been treated.
Danny Burgess, a Republican who co-sponsored the Senate bill, said families “rely on NICA for everything from diapers and feeding tubes to beds.” And the program “failed families time and time again.”
“It is time for the Legislature to step in,” Burgess said. “We have to work together to fix these wrongs.”
Said Lauren Book, another Senate sponsor: “These parents cry every single day — not because of their child’s severe birth-related disability, but because of their dealings with NICA. Because they are having to fight tooth and nail” for care.
The despair she heard from NICA families who contacted her “reveals the utter brokenness of this program,” Book said. The legislation, she said, would ensure “what I believe is the absolute bare minimum apology we owe these families in this state.”
In advance of Monday’s hearing, Shipley provided lawmakers with a “correcting the record” memo in response to the published articles in which she said NICA has served families well. She said the agency “wholeheartedly supports” increasing the one-time payment from $100,000 to $250,000 and also favors adding a parent to the NICA board, a measure she had previously rejected.
The memo disputed that the program deprives families of benefits. Instead, it said, an average NICA family receives $4.9 million in benefits during their child’s lifetime. The money comes from dues paid by doctors and hospitals, not taxpayers.
The memo also said NICA spends far more on families than on its lawyers. The Herald and ProPublica previously reported that the program paid its lawyers $16.9 million between 1989 and 2020 — more than NICA spent, combined, on therapy and doctor and hospital visits for children during the same period, which was about $10 million. NICA said when parental expenses, nursing care and initial awards are included, it paid $244.3 million in benefits over that time period.
Also Monday, the state’s top financial regulator, Chief Financial Officer Jimmy Patronis, issued a short statement updating several initiatives from his office designed to reform the program.
Patronis said he had issued a “directive” to his office’s consumer advocate, Tasha Carter, “to engage in advocacy efforts on behalf of” NICA families. The directive, he wrote in a statement, was to “coordinate directly with families” in the program and advocate for them before the Division of Administrative Hearings, which resolves NICA disputes.
“These families have been through so much already,” Patronis wrote, “and the idea that they need a doctor’s note for every little request” is something Carter can help fix.
Thousands of companies working their way out of bankruptcy are now eligible for the Paycheck Protection Program after ProPublica reported that the Small Business Administration had been excluding them.
This article was published on Monday, April 19 in ProPublica.
The federal government has quietly reversed course on a policy that had kept thousands of businesses from applying for pandemic economic aid, with only weeks to go before funds are expected to run out.
In late March, ProPublica reported on a Small Business Administration rule that disqualified individuals or businesses currently in bankruptcy from getting relief through the Paycheck Protection Program, an $813 billion pot of funds distributed to small businesses in the form of loans that are forgiven if the money is mostly spent on payroll. The agency had battled in court against several bankrupt companies attempting to apply for PPP loans, and did not change course even after Congress explicitly passed legislation in December allowing it to do so.
Referencing ProPublica’s story, the National Association of Consumer Bankruptcy Attorneys wrote a letter to newly installed SBA Administrator Isabella Guzman urging her to follow Congress’ suggestion and tell the Executive Office for U.S. Trustees — a division of the Justice Department that oversees most American bankruptcy courts — to allow debtors to receive PPP loans.
The agency has not yet contacted the Justice Department. But on April 6, the SBA released new guidance as part of its frequently asked questions for the program, redefining what it means to be “presently involved in any bankruptcy.” Under the new interpretation, debtors who filed under Chapter 11, 12 and 13 — which cover businesses, family farms and individual consumers, respectively — are eligible for PPP loans once a judge has approved their reorganization plan. A spokesperson for the SBA said the explanation had been added for “clarity.”
A reorganization plan specifies the debtor’s path to paying off obligations to creditors, and is monitored by a trustee. In simple cases, a judge can confirm it within a few months of filing. This is what often happens in consumer Chapter 13 cases, about 279,000 of which were filed in 2019, as well as in relatively straightforward Chapter 11 cases that don’t require extensive litigation. About 5,500 companies filed for Chapter 11 in 2019.
The Administrative Office of the U.S. Courts doesn’t track how many of those companies have confirmed reorganization plans in place, but it’s estimated to be in the thousands. Now, companies on the road out of bankruptcy — which usually takes years to complete — can apply for PPP loans before the program’s May 31 deadline. With $50 billion left after several extensions, PPP funds are likely to run out before then.
Ed Boltz, a bankruptcy attorney on NACBA’s board who circulated the organization’s letter, said he believes the SBA changed its position after becoming “aware of the foolishness of the prior administration’s position.”
The change would not have helped all the companies that sued the SBA over its policy. Florida-based Gateway Radiology Consultants, for example, didn’t have a confirmed reorganization plan before it applied for a PPP loan last year, prompting a lawsuit. But the bankruptcy lawyer in that case, Joel Aresty, said plenty of his current clients could benefit.
“If they were lucky enough to already be confirmed, they could freely qualify for a PPP loan — the fact that you were in bankruptcy is no longer a deterrent,” Aresty said. “It’s amazing how difficult they made such a simple proposition, really.”
The new definition may now help Mark Shriner, a coffee shop owner in Lincoln, Nebraska, who filed for Chapter 13 bankruptcy in 2018 following a divorce. His plan was confirmed the same year. The SBA’s exclusion of debtors from the PPP originally prevented him from applying, forcing him to take on higher-interest loans to keep his doors open.
His cafe likely would have qualified for up to $25,000, and Shriner said he could have used some of the money to improve his online ordering or devise a takeout-friendly menu. Even now, he said, getting PPP money would help him plan for the future and bring back more staff.
Informed of the change last week, Shriner sent an application to his bank, which said it would hear back from the SBA within a couple weeks.
Experts say we should investigate "breakthrough infections" to look out for variants and understand who's vulnerable. In many cases, that's not happening.
This article was published on Wednesday, April 14 in ProPublica.
Dr. Carey Washington was eager to be vaccinated. The psychologist, who was still working at 80 years old, got his first coronavirus shot on Jan. 12 and followed up with the second Pfizer dose on Feb. 4. With both shots done, he let his guard down at the office he shared with another doctor, sometimes leaving his mask off.
Then he woke up on March 7 with aches and fatigue, feeling as though he might have a cold. When he started experiencing chest pain and finding it hard to breathe, he booked an appointment with his primary care physician, who sent him on to his cardiologist. Both thought that his symptoms must be related to his past heart issues. But Washington's symptoms got worse. He was so tired he could barely get out of bed. His cardiologist reassured him that the fatigue was likely due to the irregular heartbeat he was experiencing, and that the medications prescribed for that would take a while to kick in. But on March 12, Washington's son took him to the emergency room anyway. A test revealed Washington was positive for COVID-19.
A week later, he was transferred to the intensive care unit. On March 25, he died.
Washington's daughter, Tanya Washington, says that after her father was admitted to the Prisma Health Richland Hospital, she was determined to understand why. Why had Washington gotten sick despite being fully vaccinated? "Doctors said that because he was vaccinated, we think this may be a variant," a strain of the coronavirus that could be more contagious or dangerous, Tanya recalls. She said they originally thought it might be a variant found in South Africa.
Working with an infectious diseases doctor at Prisma Health, Tanya helped to arrange for samples to be collected from her brother and the office secretary, who had also tested positive. The samples' genomes were analyzed via a process known as sequencing. A week and a half after her father died, Tanya found out that he had been infected by B.1.427, a variant first identified in California.
Known as "breakthrough infections," cases in which people test positive for COVID-19 after being fully vaccinated are extremely rare. Public health experts are anxious that these cases not be blown out of proportion and discourage people from getting vaccinated. Yet they also say it's critical to track and study these cases, because scientists do not fully understand who is susceptible to vaccine failure. Furthermore, as the coronavirus continues to mutate, breakthrough cases may be the leading indicator of a new variant that is more resistant to a vaccine, which could necessitate manufacturers adapting their vaccines or developing booster shots.
In interviews with patients and through information requests to state health departments, ProPublica has found that the investigations recommended by experts, including analyzing the genome of the virus that infected the patient and collecting patient demographic information such as whether their immune system is compromised, are often not being done. Some states are tracking cases but are not reporting information about severity, such as whether patients were asymptomatic, were mildly ill or required hospitalization.
In many instances, patients' samples are not sequenced to find out if a variant might have been involved; some labs are throwing out test samples before an analysis can be done; hospitals and clinics aren't always collecting new samples to analyze them. That means that for so many people, nobody will ever know if a variant was involved, leaving public health officials without data to be able to examine the extent to which variants are contributing to breakthrough cases.
"It's alarming that we can't sequence more of the virus than we're able to now — that's something we need to resolve," said Brian Castrucci, chief executive officer at the de Beaumont Foundation, a health philanthropy. "The more we know, the better we can react. We want to know the information so that we can make the right policy and health decisions."
We Need to Learn What Causes Breakthrough Cases. Many Health Departments Aren't Gathering Enough Data.
A breakthrough infection is defined as a positive COVID-19 test taken more than two weeks after finishing a vaccine course. Such cases are very infrequent, thanks to the astonishing effectiveness of the available coronavirus vaccines. Instances like Washington's, in which someone requires hospitalization or dies, are even more rare.
As of April 12, South Carolina's health department said it had identified 155 cases of breakthrough infection, which is less than 0.02% of about 950,500 people in the state who have completed their vaccination course. That's a similar rate to that reported in Washington state, where, as of March 30, 102 breakthrough cases were reported out of more than 1 million fully vaccinated people. Eight people, or 0.0008% of those fully vaccinated, were hospitalized. Oregon's experience is also similar, with about 0.02% of 700,000 fully vaccinated Oregonians experiencing breakthrough infections so far. Three out of those 168 people died.
However rare, these cases are important to investigate, experts say. "We want to make sure we're not missing them. We also want to know where they're happening, so there's a geographic surveillance element. We want to look to see if there's a pattern going on or if it's a one-off," said Dr. Mary Marovich, director of the vaccine research program at the National Institute of Allergy and Infectious Diseases' AIDS division. If a cluster of cases all came from the same geographic area, that could indicate a variant on the rise, or perhaps a problematic batch of vaccines.
While the vaccines so far have shown effectiveness against all known variants, Dr. William Gruber, senior vice president of Pfizer's vaccine clinical research and development, says scientists have to stay proactive in case new variants render the vaccines less effective: "I'm not a Pollyanna — there is potential for escape to occur," he said, referring to the concept of the virus "escaping" the protection provided by a vaccine.
Some states have only gathered patchy information on the severity of their breakthrough cases. If all breakthrough infections were mild or asymptomatic, that would indicate that the vaccines are consistently preventing people from needing hospitalization — which is what scientists expect and hope the shots will do. Without knowing when people get sick enough to be hospitalized, public health officials can't dig deeper to find out why the vaccines didn't do what they were supposed to.
"The sentinel event that we have to be on the lookout for is when these breakthrough infections result in severe COVID-19, like a hospitalization or death, because that's what a vaccine is supposed to protect against," said Denis Nash, professor of epidemiology at the City University of New York's Graduate School of Public Health & Health Policy. In Michigan, where 246 cases of breakthrough infection have been identified as of March 31, records for about half of those cases did not have any information about whether or not the patient was hospitalized, health department spokesperson Lynn Sutfin told the Detroit News. New Jersey's health department said it is tracking breakthrough infections but couldn't say how many have occurred so far or whether anyone has been hospitalized.
In many cases, sequencing to identify variants is not being done for a number of logistical reasons. Getting samples to sequence is difficult, said New Jersey health department spokesperson Donna Leusner. "Commercial labs do most of the PCR testing and commercial labs typically only keep samples for a couple of days before discarding. Thus by the time we are aware of the positive case, the sample was likely already discarded." She added that the health department can't say right now if breakthrough cases are more likely to be caused by variants because they don't have a big enough data set.
In neighboring New York, the state's public lab, Wadsworth Center, has received samples for fewer than 20 vaccine breakthrough cases that are of a good enough quality for sequence analysis, according to spokesperson Jill Montag. Samples need to be correctly stored — preferably frozen instead of refrigerated — and capture enough virus for analysis to be successful, said Kelly Wroblewski, director of infectious disease at the Association of Public Health Laboratories. Montag wouldn't say how many total cases of breakthrough infection have been found. So far, only about half the samples have been sequenced. "None have been a variant of interest," she said.
In Washington, only about 30 of the 102 breakthrough cases had samples available to be sent for genotyping, according to Dr. Scott Lindquist, acting health officer. South Carolina also has only sent about 45 samples for sequencing out of its 155 breakthrough cases, according to the health department. "Analysis of data for vaccine breakthrough cases is ongoing," said a spokesperson. "At this time, however, no specific trends have been identified."
One obstacle to gathering data is the type of test used to test patients for COVID-19. Samples from so-called "rapid" tests, which measure proteins produced in response to an infection, are typically thrown out immediately, and many clinics that perform such tests don't have the storage capacity to keep the swabs, said Wroblewski. Only a sample gathered for the more expensive PCR test, which needs to be sent to a lab with the capability to scan for RNA from the coronavirus, has the potential for such analysis. That means 23-year-old Breana Landon, who works as an insurance coordinator at a health clinic in South Jordan, Utah, will never know for sure if a variant was the reason she managed to get COVID-19 — for the second time — after she received both doses of her vaccine. Landon got her second dose of the Moderna vaccine on Feb. 3. Nearly two months later, on March 29, she woke up with fatigue, body aches and vomiting. "I thought it was the flu, because I hadn't had the flu shot but I had my COVID vaccine," Landon said. She had a rapid coronavirus test done at her workplace and was shocked to discover that she had tested positive.
"The health department called and said they think it's more than likely another variant — they think it's the U.K. variant because it's very prominent in the area," Landon said. But there was no way for her to know for sure because she never had a PCR test done, nor did the health department follow up to get another sample.
Utah's health department has tracked 143 breakthrough infection cases to date, of which seven required hospitalization, according to spokesperson Jenny Johnson. So far, only three have been sequenced, and all were B.1.429, another variant first detected in California, she said in an email. Eighty cases couldn't be sequenced due to either a bad sample or no sample, and 60 more are "pending sequencing," she said. In a case like Landon's, Utah's health department "may encourage a patient to get a PCR," but "it would be up to the patient to decide if they wanted to get a PCR test at a provider of their choice, which then could be potentially sequenced," Johnson added.
Nash, from the CUNY's public health school, said it's not always possible to go back to a patient to get a new sample — even patients who remain hospitalized may no longer be shedding enough virus after a while. He suggested having every hospital bank a sample from each of its patients for a few days so the health department can catch up when it realizes a breakthrough case has occurred.
"None of these investigations are cheap or easy," said Tara Smith, professor of epidemiology at Kent State University College of Public Health. Ideally, the Centers for Disease Control and Prevention would streamline the process of collecting and sequencing samples from breakthrough cases to see whether variants are at play. They would "have protocols and permissions in place … and have funding behind it all, too." Smith said that ideally the CDC would sign contracts with big commercial labs and lay out steps for how health providers should obtain and transport samples to those labs, "so there's something uniform and each jurisdiction doesn't have to re-create the process."
The CDC "is studying reports of COVID-19 that occur after vaccination to better understand the reasons these cases occurred," said agency spokesperson Kristen Nordlund. "Currently, there is no evidence that COVID-19 after vaccination is occurring because of changes in the virus." The CDC would not release a count of the number of breakthrough cases it was aware of or say how often sequencing information is available for those cases.
Landon says the vaccine might have helped her have a milder case this time around. In her first bout of COVID-19 in October, she developed pneumonia and needed to take an antibiotic. This time, she doesn't have pneumonia, but has been prescribed an anti-nausea medication.
Still, she says she feels "very discouraged, because I feel like I'm doing everything I can. All of us front-line workers are fighting so much, and to be sick again is just such a hit in the face."
There's a Difference Between Medical Trials and the "Real World"
We shouldn't be surprised by breakthrough infections or even the occasional severe case, according to Marovich, from the National Institute of Allergy and Infectious Diseases.While the vaccine trial results have been touted for having zero deaths and zero or only one hospitalization among vaccine recipients, that doesn't mean that they are 100% guaranteed to make people hospitalization-proof. (Granted, the numbers reported at the state level so far suggest that the rate of effectiveness against hospitalization could be rounded up to 100%, but most people who hear "100%" think it's absolute.)
"Clinical trials are idealized conditions," Marovich said. "When you get out into the 'real world,' things are not ideal." For example, Pfizer and Moderna both excluded people who were taking systemic immunosuppressants or who were in an immunodeficient state. "Someone could have an immune deficiency that makes them a nonresponder, they may be medically frail and just cannot mount enough of a response to the virus," Marovich explained. "When you give the vaccine to millions and millions of people, when that denominator increases, you will see cases."
The key, to her, is that the rate of breakthrough infections not exceed what was seen in the vaccine trials, which so far hasn't happened.
Pfizer's Gruber said the company is scrutinizing breakthrough infections in trial participants and sequencing not only vaccine recipients but also a subset of placebo recipients who get sick so it can understand the likelihood of being exposed to a variant versus the regular coronavirus.Some of the variants — such as B.1.1.7, which was first identified in the United Kingdom, B.1.351, first identified in South Africa, and P.1, first identified in Brazil — are concerning because their genetic changes are thought to make them more contagious and potentially able to cause more severe disease. A report by the European Centre for Disease Prevention and Control noted severalmedia reports of outbreaks in long-term care facilities that included breakthrough infections among fully vaccinated residents and staff were often linked to emerging variants of concern, "but the majority of cases among vaccinated residents have been mild or asymptomatic, with only a minority of cases requiring hospitalisation."
Gruber says he's been encouraged by the real-world data he's seen so far. Data gathered in Israel, where B.1.1.7 is the dominant strain, found that Pfizer's vaccine was at least 97% effective against symptomatic COVID-19, hospitalizations and deaths.
"We're gratified" by this data, Gruber said, "but we're not sitting idle hoping for the best, we are preparing in case there is a breakthrough."
Data on the vaccine's effectiveness against B.1.351 has been mixed. In Pfizer's study of the vaccine's efficacy against this variant, conducted in 800 participants in South Africa, nine people who received the placebo became sick with COVID-19, while none of the vaccine recipients got sick. But a small study from Israel, posted online on April 9, found that among almost 400 people who tested positive for COVID-19 after being fully vaccinated, B.1.351 was eight times more prevalent than it was among a similar cohort of unvaccinated patients who got sick, suggesting that the vaccine may be less effective against that variant.
Pfizer is developing a booster vaccine to target B.1.351, Gruber said, "not so much because we think the South Africa variant is going to be a problem but because it gives us experience in how fast we can come up with a new vaccine." The company is also studying the efficacy of its vaccine against the P.1 variant via its trial sites in Brazil, he added. Moderna did not respond to a request for information about how it is tracking and studying breakthrough cases.
Immunocompromised People Should Be Extra Careful
Another reason to study breakthrough cases is that they may affect guidance for specific subgroups of the population who might be more at risk for vaccine failure. Numerous academic groups are rushing to study the vaccines' potency in immunocompromised people. Early data suggests that some medications may suppress the immune system so much that some individuals cannot make any antibodies, even after being vaccinated.
One ICU doctor in Long Island, who asked not to be identified because he wasn't authorized to speak on behalf of his hospital, said that when he's seen breakthrough infections in people with well-functioning immune systems, they tend to be very mild, with "cold-like" symptoms. But he's seen two blood cancer patients who tested positive after receiving both doses of the vaccine and needed to be hospitalized.
"We checked them for antibodies and when they came in, they were negative — it's just not taking for them," the doctor said. A healthcare worker near Minneapolis said a 52-year-old patient who had leukemia was hospitalized for nearly a month after he got sick, despite being fully vaccinated. Fortunately, the patient recovered and was discharged.
Research is beginning to suggest that differences in immune response may be due to the type of medication a patient is on, said Dr. Alfred Kim, assistant professor of medicine at the Washington University School of Medicine and co-director of the university's Lupus Clinic. Kim's study of rheumatology patients has found that the drug rituximab and some steroids make them particularly vulnerable, while other classes of drugs, including TNF inhibitors, JAK inhibitors and anti-metabolites don't seem to prevent patients from producing an immune response to the COVID-19 vaccine.
Rituximab is also used as a treatment for blood cancer. The Long Island doctor stressed that even patients who finished rituximab treatment months ago should be aware that their bodies may not respond to the COVID-19 vaccine. "Even if they got it seven, eight months ago, it's a very effective drug for some kinds of leukemia or lymphoma, but the effects can persist for years afterwards."
Dr. Dorry Segev, professor of surgery and epidemiology at Johns Hopkins University, is studying the vaccines' performance in patients who have received organ transplants and need to take immunosuppressing medications for the rest of their lives to keep their bodies from rejecting the donated organ. While the vaccines appear to be safe in that population, it may not actually work in some of those patients.
"There are CDC guidelines that say you can go out and do things. What really scared me is if we tell that to people who are on immunosuppressing drugs and they think they have immunity, 'Go out and do things,' and realize too late that they're not immune by actually getting the virus," said Segev. Segev and his team have already published a study showing that after one shot, only 17% out of 436 transplant patients created any antibody response. "That's a stark contrast to 100% of immunocompetent people who have antibody responses to dose one," he said.
The team is preparing to publish the follow-up study that examines antibody levels after the second vaccine. "It looks like about half of the patients will have some antibody response," he said. "That still leaves us with half who have nothing, and we're trying to figure out what to do for them, whether the best practice would be to get a third dose of the same vaccine."
Segev is calling on the CDC to make clear in its guidelines for immunocompromised patients that even after being fully vaccinated, it's not safe to drop precautions. "Hopefully they'll put out something clear in lay terms to say, 'Do not assume vaccination is immunity if you have a compromised immune system,'" he said.
The CDC didn't respond to questions about its guidance and whether it has any caveats to its recommendations for subsets of vaccinated populations. Currently, the only note about immunocompromised individuals in the agency's guidelines is a suggestion that people "should discuss with their provider if they have any questions about their individual situation, such as immunocompromising conditions or other concerns."
Communication about what the vaccine allows each individual to do must focus on the experience of the 99%, said Castrucci, of the de Beaumont Foundation. "You simply cannot manage to the rarity," he said. "If the messaging is, 'If you're vaccinated, you have to stay home and you still can't leave,' how many people are going to get the vaccine?"
In fact, it's critical to explain to the public that it's even more important for everyone to get vaccinated because the vaccines don't make every single person hospitalization-proof, said Pfizer's Gruber.
"People tend to forget the importance they have as a citizen to protect the most vulnerable," he said. So until case counts are significantly lowered, it's important to continue to wear a mask among crowds and keep gatherings small: "Think of it like a belt and suspenders." Joan Towers is a transplant recipient taking two medications that suppress her immune system. Towers enrolled in the Johns Hopkins study, hoping that the vaccines would help her be able to end her yearlong isolation. "People like me are extremely vulnerable, but we don't want to live in a bubble for the rest of our lives, especially when we've been given the gift of life," she said. On the day she got her second vaccination, "there was such a feeling of relief, it was almost like a celebration," she said. But then came the blow — the Hopkins study revealed that she doesn't have any detectable levels of antibodies, even after the second shot.
Vanessa Lamers, Towers' daughter, said she's anxious for as many people as possible to get vaccinated so that her mother will be protected by her community.
"We now know that the mRNA vaccines are helpful in preventing spread and infection," said Lamers, who works at a public health nonprofit. "So I'm going to have to be that solid brick wall of antibodies for my mom and protect her."
We Just Need More Answers
As time goes on, these case investigations could become more important. "We don't know how long the vaccines are going to work beyond 6 months, so maybe if we can't keep people up to date with boosters, we might see these cases happen more commonly even when regular strains are in circulation," said Nash, from CUNY. "We know that they're very rare now, but the challenge is, things can change," Nash added. "As we know, things keep changing with COVID, so it could be different in a few months. We can't back off from surveillance."In the meantime, much still remains to be understood about some of the breakthrough cases that have already occurred.
Carey Washington was not considered immunocompromised. It's unclear if his age meant that his immune system may have been more fragile.
"I think this is a lost opportunity if we don't more aggressively sequence patients," said Kim, of Washington University. "But at this stage in the game, most state health departments are resource-constrained and their workers have a substantial amount of fatigue. It's not an excuse, but I do understand that the circumstances of the pandemic have led to suboptimal choices."
To Tanya Washington, however, it seems more needs to be done.
Sometimes, she says, while her brain knows what happened, she still cannot believe her father is no longer alive. "He could tell you the story of the clerk at CVS, or the bagger at Kroger. He spent time with everyone, he knew everybody's story," she said.
Tanya said she is a "huge proponent" of vaccines, and she has helped at least 15 people in her community get appointments for their shots. She still thinks vaccines are good, but wants people to understand that they're not 100% effective. She's worried that the vaccine may not work as well against the variant that infected her dad and wants the variants' interactions with vaccines to be more carefully studied, she said. She also wants to remind people to keep wearing masks and distancing even after getting vaccinated. "I don't want my dad's death to have been in vain."
"I've seen so many people on Facebook saying, 'We're fully vaccinated, now we can get back to normal!'" she said. "To me, I'll never feel normal again, losing my dad like this."
A Florida program promises support to families of severely brain-damaged infants. Instead, parents have been forced to choose between parenting and a paycheck. Poor communication and bureaucratic hurdles have made the situation worse.
This article was published on Saturday, April 10, 2021 in ProPublica.
By Daniel Chang and Carol Marbin Miller, Miami Herald
JACKSONVILLE, Florida — Over two decades, Choi “Julie” Nguyen bounced from one low-paying job to the next: dishwasher, custodian, manicurist. As a single mom raising two daughters and a profoundly disabled son, Nguyen could never hold a job for long.
Inevitably, the nurses Nguyen relied on to care for her son, Justin, would arrive late or not at all. Who would suction his mechanical airway, fill his feeding tube or turn him in bed to prevent pressure sores? Who was going to sleep on the couch at the hospital when Justin had surgery or fought life-threatening infections?
Ultimately, Nguyen faced the impossible choice of holding down a job and paying the bills — or looking after Justin and being constantly, hopelessly broke.
Under NICA’s own rules, she should not have had to choose between parenting and a paycheck.
State lawmakers created NICA in 1988 to stem what the law’s advocates called an exodus of obstetricians fleeing Florida and its high malpractice insurance premiums. The law holds down insurance costs by shielding doctors from potentially ruinous malpractice awards for birth injuries like Justin’s, which require a lifetime of medical care. It also forecloses lawsuits from parents like Julie Nguyen.
In exchange, NICA agreed to compensate her claim in 1998 with $100,000 upfront and a pledge that future expenses for her son’s “medically necessary and reasonable” care would be paid.
In October, Nguyen and her daughters, Jessica and Jennifer Pham, 32 and 31 respectively, learned — from Miami Herald reporters — that NICA offers many more benefits than they ever knew were available.
Though Jessica and Jennifer Pham long had told Justin’s NICA caseworkers about the family’s struggles, they said NICA never offered, nor even mentioned, the one thing that would have made the greatest difference in their brother’s life: a steady paycheck for Nguyen for caring for her child. It is a NICA benefit lawmakers authorized in 2002, when Justin was 6.
Now 24, Justin has lived far longer than doctors predicted. It has not been an easy journey, Jennifer Pham said.
“It always felt like we were alone in this,” she said. “Had we known about all these benefits, things would have been easier.”
NICA administrators would not agree to an interview but answered questions about Justin’s family by email after Jennifer Pham formally waived privacy protections.
Administrators said they weren’t aware Nguyen, 60, was having problems with in-home nursing because it was being paid for by Medicaid, a separate state insurer for low-income and disabled Floridians. “NICA also would not have been independently aware if Ms. Nguyen was having difficulty maintaining employment,” the program added.
In 2004, NICA said, the program mailed a benefits handbook to all families in the program — marking the first time in the program’s history that benefits were spelled out in writing for them. Nguyen, a Vietnamese immigrant with a limited command of English, could not read it.
Although 20% of Floridians were born in another country, according to the Census Bureau, the NICA handbook is printed only in English.
Jennifer Pham said NICA absolutely knew the family was struggling with nurses, the insurers that administer Medicaid’s benefits and Justin’s constant hospitalizations — as reflected in more than 8,000 pages, obtained by the Herald and ProPublica, documenting NICA’s interactions with the family.
In October 2020, one day before she spoke with the Herald for the first time, Jennifer Pham wrote to NICA pleading for help with nursing as the coronavirus pandemic made caregiving a challenge. The younger of the sisters had made similar complaints to Justin’s caseworkers in the past, including in August 2017 when she had the staffing agency send NICA a list of dates that nurses had missed their shifts, emails show.
“We don’t have any shift nurses and it’s been a struggle working full-time from home and caring for Justin,” Jennifer Pham wrote in the Oct. 21, 2020, email to Justin’s caseworker. “Finding quality nurses in adult care is difficult,” she added two days later.
NICA’s caseworker had only sympathy to offer — not help. “I am so sorry there is such difficulty with finding nurses right now,” she replied on Oct. 26, 2020. “I hope the situation improves soon.”
Program administrators have had the chance to do more than hope that things improve. But when state legislators proposed reforms to strengthen the program for families, NICA worked to put an end to the proposal.
A 2013 bill would have required NICA to provide families with an annual update on available benefits for their child, and it would have given parents something they have lacked from the program’s start: a seat on NICA’s board of directors, which is made up exclusively of health care industry and insurance interests.
Internal emails obtained by the Herald show that NICA’s executive director, Kenney Shipley, considered the effort “pretty silly.” In one email to a past president of the Florida Obstetric and Gynecologic Society and a lobbyist, Shipley wrote that “we are not here or funded to ‘promote the best interest’ of the children.” The bill died before reaching the Senate floor.
Justin’s family was oblivious to all that. They were busy raising Justin.
Building Trust
Program administrators knew Justin’s injuries were profound soon after he was born at University Medical Center, now UF Health Jacksonville, on Sept. 17, 1996.
Labor lasted 16 hours, the delivery complicated by the umbilical cord being wrapped around his neck, according to medical records. Doctors predicted that he might live a little more than a decade.
According to a note in Justin’s medical records, NICA’s pediatric neurology consultant reported in June 1998 that “as Justin’s brain damage is quite severe, he will likely be bedfast” — unable to leave his bed.
“Child is at near-vegetative state — physically and mentally,” the notes say. “Fetal distress was present early in labor but continued in labor,” the notes say, underscoring the word “continued.”
The notes add: “Post natal course was a disaster.”
Justin’s diagnoses included cerebral palsy, spastic quadriplegia, epilepsy and neuromuscular scoliosis. Because NICA is a no-fault compensation fund, Nguyen need not have determined who was responsible for his injuries to qualify.
Jennifer and Jessica Pham, 6 and 7 when Justin was born, had to grow up fast to help meet the needs of their brother. He would spend the vast majority of his time flat on his back, and he had to be properly hydrated and turned regularly to prevent pressure sores. He became the focus of the family’s life.
As caregivers, Justin’s mother and sisters had more grit and devotion than training and resources. Because of their mother’s limited English, the sisters had to deal with NICA. Jennifer Pham said it was she who called NICA in tears in 2002, pleading for help after it became increasingly difficult to take her brother to doctor appointments strapped in only by a shoulder harness. Although NICA would provide the van, it took almost half a year from when it was requested in writing, the family said.
The sisters learned to crush, mix and monitor Justin’s medications, feed him with a syringe, bathe and dress him. And they learned to relate to Justin through touch and sound and by reading the subtle cues — his eye movements, his breathing patterns, his faint facial expressions.
“You’re guessing whether he’s in pain, if he’s thirsty, if he’s too hot, if something is pinching his side,” Jennifer Pham said.
The family’s primary interaction with NICA was submitting receipts for out-of-pocket expenses, Jennifer Pham said. Sometimes it took months for NICA to reimburse them for items the program could have paid for directly, the sisters said.
In addition to the van, NICA paid a nurse five hours each week to help coordinate Justin’s care from 2012 to 2017. In early 2020, NICA also agreed to pay for Justin’s twice-weekly physical therapy.
Jennifer Pham emphasized that the family is thankful for that and the other help NICA has provided, including the $100,000 payment that all NICA families receive as compensation for not being able to sue. The money helped her mother buy a three-bedroom home in Jacksonville.
“I don’t want to sound ungrateful for the things that NICA has done for us,” Jennifer Pham said. “They have done things for us that have contributed to Justin’s life in good ways.”
But NICA has always been a passive participant in Justin’s care, she said — aware of Justin’s needs but offering to help only after the family had exhausted every other resource.
“Why do we have to beg for it?” Jessica Pham said. “We’re not asking for any more than what they said he was going to get.”
While NICA makes families use every other available payment source before the program will reimburse, Medicaid does the same thing. That makes for complications.
It meant the family had to ask Justin’s doctors to write letters attesting to every item’s medical necessity, secure a denial letter from a Medicaid insurer and then appeal, which sometimes required a hearing. The process was convoluted and could take months of follow-up and familiarity with complex bureaucracies.
NICA also insisted that caregivers, equipment providers and other vendors be compensated at the same rate that Medicaid pays, though the Florida Medicaid program’s pediatric reimbursement is so low that some doctors refuse to accept Medicaid patients. Justin’s records, for example, show a physical therapy group balked at the billing rate, requiring the Nguyen family to find another.
In December 2014, a federal judge said Florida’s Medicaid reimbursement rate was preventing some needy children from getting care. A settlement between the American Academy of Pediatrics’ Florida Chapter, which had filed suit over the payment rates, and state health administrators was intended to improve reimbursement — and quality of care.
“Justin Was Cheated”
In October, Herald reporters told Jennifer Pham that her mother could be paid for watching Justin — and that it was a long-standing policy. Pham, a law school graduate, checked it out herself and confirmed it was true.
She wept.
It was one of many things the family says it knew nothing about, benefits ranging from $30,000 in home renovations to accommodate Justin’s disabilities to $500 a year in therapeutic toys that could have been reimbursed. And that they could have been reimbursed for trips to and from the doctor and hospital.
Some of those provisions are in the 38-page benefits manual, some not. While Nguyen couldn’t read the book, her daughters could have — but were in first and second grade when Justin was accepted into NICA.
“Justin was cheated out of so much that was readily available for him,” Jennifer Pham said.
On Dec. 7, NICA agreed to do what it could have done all along: pay Nguyen for 20 hours a day at $15 per hour to care for Justin. NICA administrators also said they are “working with the family” to provide Nguyen four years of back pay, although the policy allowing payment for parents went into effect 18 years ago.
Jennifer Pham said she wishes NICA would do a better job communicating with families.
“I am grateful that Justin has lived all these years and NICA has supported him. But did we get the things we were promised for a lifetime of support? No.”
Last week ProPublica cited epidemiologists saying New York was "crazy" to keep closing schools over two unlinked positive cases. This week, the city ended the rule.
This article was published on Friday, April 9, 2021 in ProPublica.
New York City announced on Thursday an end to its rule that had led to thousands of public school closures despite little evidence of COVID-19 outbreaks. Schools will now only be closed if testing shows there is viral spread within a school.
Under the old rule, schools were closed if testing found two positive results, regardless of the school’s size and even if the cases were apparently unlinked, such as those involving kids grades apart who never crossed paths. ProPublica contacted 10 epidemiologists and physicians, nearly all of whom said the policy didn’t make sense. “It’s ridiculous. Obviously ridiculous,” said Dr. Uché Blackstock, a former professor at New York University who now runs a firm focused on addressing racial inequities in health care.
Going forward, schools will only be closed if they have four or more positive tests that, critically, are traced to in-school transmission.
Research has found that schools can be safely reopened when protective measures are put in place, such as universal masking and good ventilation. Of the positive tests at schools that have been traced, most have resulted not from outbreaks within school buildings but from spread outside of them.
New York City Mayor Bill de Blasio first said back in early February that he would be revisiting the two-case rule. But changes were opposed by the city’s teachers union. Last week, the United Federation of Teachers told ProPublica it remained supportive of the policy.
But the union today expressed support for the changes. “With our increased knowledge about the spread of the virus, and as more teachers and other school staff have been vaccinated,” it said in a statement, “our medical experts are convinced that the rule can be changed and still maintain safety.”
“We worked together with the unions to figure out the right approach going forward,” de Blasio said at a press conference announcing the changes on Thursday.
The tensions in New York City echo the debates over school reopenings across the country. While an increasing number of schools have brought kids back for in-classroom teaching, many communities have moved more slowly. The majority of children in California still do not have access to in-class instruction.
Instead of closing when two cases are found in different classrooms, New York City schools will conduct further testing. But individual classrooms will still be closed when testing finds at least one positive case.
Dr. Elissa Schechter-Perkins, an epidemiologist and infectious disease doctor at Boston University School of Medicine, said she’s concerned the new policy will still result in children unnecessarily losing access to in-person schooling.
“Shutting down a class after only the introduction of the virus into the classroom is not necessary,” said Schechter-Perkins, whose research recently prompted the Centers for Disease Control and Prevention to revise its guidance on spacing in classrooms. “We have ample evidence that the rate of in-classroom secondary transmission from that index case is exceedingly low.”
Officials called for reforms hours after an investigation by the Miami Herald and ProPublica identified gaps in a Florida program that strips families of their right to sue when births go horribly wrong.
This article was published on Friday, April 9, 2021 in ProPublica.
By Carol Marbin Miller and Daniel Chang, Miami Herald
Declaring that Florida leaders “can and will do better” for the families of catastrophically brain-damaged children, the state’s top financial regulator Thursday initiated an audit of the state program that oversees care for those injured in childbirth.
Chief Financial Officer Jimmy Patronis said Thursday that the Office of Insurance Regulation, which he supervises, will examine the books of the state’s Birth-Related Neurological Injury Compensation Association, or NICA. Patronis’ office already has begun an “inspection” of the program, which was the subject of an investigative report published hours earlier by the Miami Herald and ProPublica.
The news organizations detailed how NICA has amassed nearly $1.5 billion in assets but has denied or delayed help for struggling families — sometimes spending tens of thousands more in legal fees fighting requests for benefits than it would cost to help parents who depend on the program to care for their children.
In the budget year ending June 30, 2020, NICA earned six times as much in investment income, $124.6 million, as it spent on families of brain-damaged children, $19.8 million.
And while many NICA families struggle, the professionals who do business with the fund do not, the Herald reported. NICA paid its lawyers $16.9 million between 1989 and 2020. That’s more than the program spent on therapy and doctor and hospital visits for children — combined — during the same period, about $10 million.
“We need to make sure these kids and their families aren’t being nickel-and-dimed,” Patronis said in his statement, echoing the language of two parents quoted in the Herald. “This program needs to treat these children with kindness instead of treating them as though they are a liability for shareholders.”
In a written statement late Thursday, NICA administrators said that, while the Herald presented “a moving and emotional story of several families,” the investigation failed “to provide a completely accurate portrayal” of the program.
NICA said that the stories included criticism of the program for issues “that occurred more than 15 years ago, in many instances prior to the current NICA leadership.”
“We have worked tirelessly to address issues that have arisen over the years, including making processes more responsive to families’ needs, while fulfilling our obligation as fiscal stewards,” read the statement sent by Executive Director Kenney Shipley.
NICA defended its mission to reduce malpractice premiums for doctors and said it had followed through on the Legislature’s intent to “provide catastrophically brain-damaged infants with the medical care they need without subjecting their families to protracted legal battles. We take this critical mission very seriously, recognizing the physical, emotional and financial toll it takes on families to care for a highly disabled infant, child or adult.”
The program said it will work with Patronis on reforms that Shipley and NICA’s board had once opposed, including adding a parent to the board and raising awareness of program benefits for families.
Separately, Shipley also sent an email to NICA families, repeating many of the same points. “We aim to treat every family in the program fairly and individually, providing the benefits they are entitled to based on their specific needs,” Shipley wrote.
The sister and legal guardian of a Jacksonville man who was accepted into NICA in 1998 said she would like to see the Florida Legislature reform the program so it is required to effectively communicate benefits to caregivers who are often overwhelmed with the demands of caring for a profoundly injured family member.
Jennifer Pham, 31, said she long had told NICA about her family’s struggles caring for her brother, Justin Nguyen, 24.
Their mother, Choi “Julie” Nguyen, had trouble holding a job because of the demands of caring for Justin, Pham said. Nurses would show up late or not at all for shifts, causing Julie Nguyen to miss work. Other times, Nguyen has been unwilling to leave Justin alone during his many hospitalizations.
For nearly 20 years, NICA has been authorized by state law to pay parents who miss work or leave careers to care for their injured child at home. But NICA’s caseworkers never told Nguyen or her daughters about that benefit. Pham learned of it when Herald reporters told her during an interview in October.
“There needs to be a stronger relationship between NICA and the families. You have to work together,” Pham said. “My experience so far is that NICA just puts everything on the family.”
In 1988, the Florida Legislature created NICA as part of a slate of lawsuit restrictions designed to lower malpractice premiums for doctors. The law forbids parents from suing their doctor and hospital when complications during childbirth cause “substantial” brain damage. In exchange, NICA offers parents a one-time $100,000 payment and the promise of “medically necessary” and “reasonable” health care for their disabled child.
The Herald and ProPublica reported that NICA often denies requests for care and services, and forces families to file costly appeals before the state Division of Administrative Hearings, which adjudicates birth injury claims, when they are rebuffed. The program’s records show NICA has rejected requests for wheelchairs, therapy, in-home nursing care and supplies for children with feeding tubes.
Since its inception, the program has never included the parent of a disabled or medically fragile child or an advocate for such families on its five-member, unpaid board of directors. The current board, all men, represents only health care and insurance industry interests.
In his statement, Patronis said that his wife, Katie, had sustained complications during childbirth for both of the couple’s sons. “I know that every loving parent is stressed out and undergoing an intense amount of emotions when their children are at risk,” Patronis wrote. “I cannot imagine or understand how difficult things are for families of children with neurological injuries.”
He added: “We’ve got to figure out a way to make things easier for them.”
Patronis, who served in the Florida House of Representatives from 2006 to 2014, said lawmakers “should look at changing the laws governing board appointments,” adding the state law governing NICA “doesn’t require a non-doctor [or] parent ... to be a member, yet requires doctors and insurer interests to be represented.”
“It’s also ridiculous that NICA’s money managers get more in lump sum payments than parents with sick babies,” Patronis added.
Florida lawmakers already are considering legislation that would increase parents’ one-time benefit from $100,000 to $250,000, as well as an amendment to raise the program’s death benefit from $10,000 to $50,000. The legislation was proposed after NICA hired a publicist and was fielding questions and public record requests from the Herald.
Patronis’ statement appears to challenge the program’s core principle. Parents whose children meet the criteria for NICA benefits generally have no choice but to forfeit their right to file a lawsuit. But in his statement, Patronis said “parents shouldn’t be put into a position where they feel pressured into signing their rights away.”
A sponsor of the pending legislation, Sen. Lauren Book, a Democrat, said that both she and the bill’s other Senate sponsor, Republican Sen. Danny Burgess, both “were outraged, obviously, at the things uncovered by [the Herald], and we have been looking at many different ways to reform” the program.
Book said she and Burgess, who could not be reached, are amending their bill to require the state to include a family member on the NICA board. “I was stricken by how these moms are left to carry on, oftentimes when families crack under the pressure of these immense challenges,” she said.
The two lawmakers also would like to require NICA to appoint a parents’ “advocate” who can “help families navigate the system” and receive the full benefits state law requires.
“We have to ensure these families have everything they need when having to deal with a lifetime of challenge and pain,” Book said.
Ruth Jacques, distraught over the fatal injuries her son suffered during childbirth, couldn't sue her doctor because of an obscure Florida state law. When she protested at his office, she was told to cease and desist.
This article was published on Friday, April 9, 2021 in ProPublica.
By Carol Marbin Miller and Daniel Chang, Miami Herald
ORLANDO, Florida — On the day Reggie Jacques was born, doctors at Winnie Palmer Hospital in Orlando told his parents that there was no hope, that his brain had gone too long without oxygen during his difficult birth. But Reggie refused to die.
On his sixth day, said parents Jean and Ruth Jacques, doctors urged them to remove Reggie from his ventilator. They said he would surely stop breathing. The couple agreed a month later. But Reggie wouldn't die.
Around day 60, doctors asked the couple to sign a "do not resuscitate" order. They declined. And Reggie still refused to die.
For 95 days, Reginald Jacques refused to die.
But on the 96th day, Sept. 19, 2016, something felt wrong. Ruth Jacques surrendered to an irresistible impulse to hold her son after a day's work for an Orange County social services agency. "I was driving the car like a madwoman," Jacques said of her early evening trip to the hospital.
Jacques flew through red lights. Uncharacteristically, she left her car in a parking space for disabled drivers. She ran up three flights of stairs to the Neonatal Intensive Care Unit, where, she said, Reggie's monitor was beeping, and he appeared to be in distress.
She picked up her infant son from his bassinet — all tubes and bandages and chirping monitors — and placed him gently on her chest. "With the little strength he had left, he lifted up his head and looked back at me," she said.
Jean and Ruth Jacques discuss the difficult birth of their son Reggie and their interactions with hospital staff. Credit: Emily Michot/Miami Herald
"One minute later, his heart stopped. It was more like our heart stopped."
Four years later, Ruth Jacques' heart beats for two as she wages a campaign to demand answers from the doctor who delivered her son. She believes Florida's state-sponsored Birth-Related Neurological Injury Compensation Association, or NICA, robbed her of the right to seek justice through the courts for the harm he suffered at birth and three months of agony as he fought for life.
Florida lawmakers created NICA in 1988, responding to obstetricians' complaints that their malpractice insurance premiums were too high. The law bars parents like Jean and Ruth Jacques from pursuing lawsuits against doctors and hospitals when a baby is born with catastrophic, even fatal, brain damage from oxygen deprivation or asphyxia during childbirth.
If the birth injury meets NICA criteria, even in cases where the doctor or hospital may have made a glaring error, parents typically have little choice but to forgo a lawsuit and accept the program's compensation, which consists of a $100,000 settlement upfront, and "medically necessary" and "reasonable" healthcare for the duration of the child's life.
If the child dies, there is an added $10,000 funeral benefit.
The Jacqueses hoped to sue their obstetrician and hospital for negligence, only to learn from their attorney of the law that created NICA. Stripped of that right, they settled for filing a malpractice complaint with the Health Department. They received a form letter saying their complaint had been dismissed because the doctor's actions did not violate the profession's "standard of care." There was no further explanation. Ruth Jacques said neither she nor her husband was interviewed by investigators.
The Jacqueses cannot appeal the investigation's outcome, or even read about it, beyond the form letter. In Florida, those records are sealed and available only to the doctor.
That wasn't the state's only betrayal, Ruth Jacques said.
The day after Reggie's death, overcome by anger and despair, she did the only thing she could think of: She printed leaflets warning prospective patients to stay away from Dr. Ricardo Lopez, the obstetrician who delivered Reggie. She said she handed them out in front of his Orlando medical office — and distributed a few to patients in his waiting room.
"I felt like the world was shutting me up," she said. "I wanted to be heard."
Ruth Jacques said she was silenced again. She learned that Lopez was free to do what she could not: file a lawsuit. Her attorney told her if she persisted in protesting she might end up a defendant.
A lawyer for Orlando Health, which owns Winnie Palmer and employs Lopez, wrote to the Jacqueses' lawyer in January 2017: "I respectfully demand that Ms. [Jacques] cease and desist from further attacks on Dr. Lopez and [the hospital] regarding this matter." Then the couple's lawyer wrote to Ruth Jacques.
"I understand your anger," the lawyer explained in an email. But, she added, "Any kind of verbal attack or public complaint about Dr. Lopez or Orlando Health could lead them to sue you and your husband personally."
Lopez, who did not sue, declined to respond to the Miami Herald's requests for an interview, forwarding the inquiry to Orlando Health.
Alayna Curry, an Orlando Health spokeswoman, said the hospital would not discuss Reggie's calamitous birth, even though his mother has.
"Our medical team respects the wishes of our patients when it comes to their delivery experience," she said in a prepared statement. "When a medical emergency arises during a delivery, time is of the essence and our physicians will speak with the patient about the recommended course of action."
"You Better Push"
There is sharp disagreement over precisely what was said and when inside the delivery room.
Ruth Jacques provided the Herald a copy of her medical records, which contain a notation from Lopez that, based on "severe" fetal heart recordings, "a C-section was offered."
"The patient refused," Lopez wrote.
A nurse also reported "Pt refused C-section" in a notation dated two days after Reggie was delivered.
Jacques said she did no such thing, and the records do not contain a signed form from the mother refusing a C-section. The form is considered an industry "best practice," but not a requirement.
In a 2017 letter to the state Health Department, Ruth Jacques said she insisted that Lopez never told her Reggie's life was in danger.
"You better push, or you're going to have a C-section," she said she was told by the doctor. "In my understanding, he is threatening me [with] a C-section if I don't push, not that the situation … was an emergency."
Ruth Jacques did continue pushing, according to her medical records. Lopez attempted to deliver Reggie using a vacuum device, which popped off the infant's head three times before the fourth pull succeeded.
Dr. Nicole Smith, medical director of maternal fetal medicine practice at Brigham and Women's Hospital, Harvard Medical School's teaching hospital in Boston, said in general the responsibility lies with doctors to explain their rationale and the benefits and risks of continuing in labor or moving to a surgical delivery.
"Mothers maintain the right to decline a C-section," Smith said in an email, "but it is the provider's responsibility to ensure that they understand the risks and benefits to the extent possible in what is typically a highly stressful situation."
Smith did not review Ruth Jacques' case or comment on the delivery.
Ethical guidelines of the American College of Obstetricians and Gynecologists also place the onus on the obstetrician to provide the patient with "adequate, accurate and understandable information."
The group advises, however, that even a signed form does not guarantee that the ethical obligations of informed consent have been met.
Reggie's parents believe their son would have lived had Lopez initiated a timely C-section, potentially preventing Reggie's brain from being starved of oxygen. But they will never really know.
Like many NICA families, the Jacqueses said they had no idea that they had lost their right to file suit.
Ruth Jacques said she signed forms acknowledging that her doctor and the hospital had informed her of NICA before Reggie's birth. But she didn't read them. She said her OB-GYN had her sign them on her first appointment. At the hospital, the forms were tucked inside a stack of documents handed to her when she showed up in labor, distracted by impending motherhood, too late to change her mind and seek out another hospital.
After they lost Reggie and learned that a lawsuit was foreclosed, the couple said their sorrow would turn to outrage when they discovered that Lopez had a history with NICA.
Aside from Reggie's case, the doctor has been named in four NICA claims, including two petitions filed prior to Reggie's death. Not every NICA claim is accepted for compensation. But one of the first two lodged against Lopez was.
Two other claims were submitted after Reggie died. Those two were rejected because the newborns weighed less than 5.5 pounds — the legal threshold to qualify for NICA, a requirement intended to eliminate very premature babies from eligibility. In the case of a rejected claim, the family can sue. But none of the rejected claims has been followed by a lawsuit.
Being named in a petition does not mean a doctor committed malpractice — even if the claim is compensated. It only means that the case meets the narrow criteria of the no-fault program.
Bonded by Sorrow
If NICA families are members of an unenviable fraternity, families whose child died are its saddest chapter.
A total of 1,238 NICA claims have been made from the inception of the program through the beginning of April. NICA said at least 440 of those were accepted for coverage, which includes at least 143 from parents whose child had died by the time the claim was accepted.
Another 50 children whose claims were accepted for compensation died after they entered the program, NICA said in an email. Among those 50, the average life span after acceptance was 8.2 years. The oldest lived 29 more years. The youngest survived one day after the claim was accepted.
For some parents, NICA cannot provide what they want most: accountability.
There are practical considerations, said David Studdert, a Stanford University professor and expert in health law who co-authored a study of NICA in 2000.
Some of those families who were accepted into NICA likely would have gotten nothing had they been allowed to pursue a lawsuit.
But there is catharsis in discovering what went wrong, who is responsible — even in just being heard — said Kenneth Feinberg, a lawyer who has designed and administered compensation funds in the wake of some of America's worst tragedies: the Virginia Tech massacre, the Sandy Hook Elementary shooting, the rampage at Pulse nightclub, Sept. 11.
The fund established after the Sept. 11 attacks was entirely voluntary, and 97% of eligible claimants opted to take the money, Feinberg said, forfeiting the right to sue. The program had an unusual feature: Claimants could appear before Feinberg or a staff member behind closed doors to express their grief; 1,500 did.
"All kinds of people came to vent, angry, not at the federal government. Angry at God," Feinberg said.
Feinberg said many described the program as an exercise in justice, but he saw it differently. "I don't think those words have much meaning when you've lost a loved one," he said. "The best word I use is mercy."
Reggie Never Cried
Jean Jacques' father died in March 2015, on the same day the couple returned from their Caribbean honeymoon cruise, leaving them despondent and Jean Jacques as the lone male heir. They decided they wanted to become parents right away. They were hoping for a boy, someone to carry forward Jean Jacques' father's last name and legacy.
They found a house suitable for raising kids. Ruth Jacques' family threw a baby shower. They painted the walls of Reggie's nursery teal and gray, bought a brown crib and attached stickers of giraffes, lions and zebras to the walls.
On the morning of June 14, 2016, Ruth Jacques went to see her obstetrician for a regularly scheduled appointment. She said there was no indication that Reggie was ready for delivery. She drove to work at the social services agency where she was a neighborhood coordinator.
But the next morning, she woke up with a fever and tremors, so she went to Orlando Health Winnie Palmer Hospital for Women & Babies. There, her water broke, and she went into labor. Lopez had not been her obstetrician previously but was there for childbirth.
To Ruth Jacques' ears, Lopez was accusing her of failing to adequately push what she later learned was a 10-pound baby.
When Reggie finally was born, he was essentially lifeless. His first two Apgar scores — measures of his vitality, on a scale of one to 10 — were zero and zero. He required four doses of epinephrine to start his heart.
"Normal babies, when they are born, they cry, they open their eyes," said Jean Jacques, an Orange County Schools paraprofessional and full-time student at the University of Central Florida. Reggie did not cry.
He was placed on a ventilator — which doctors would recommend unplugging six days later, Ruth Jacques said. Bereft of answers, Ruth and Jean Jacques asked for a meeting.
It took place a week after Reggie's birth, in a conference room near the intensive care unit, with a U-shaped wooden table. Ruth Jacques' father, sisters, aunt and the family's pastor joined the couple. She recalls a hospital lawyer standing against a wall opposite her and Lopez sitting at the head of the table, his arms folded across his chest. He didn't look at her, she said. The doctor barely spoke.
What happened? she asked. Why was her baby on a ventilator with little to no hope of survival?
"He looked at me in the eye, and he said: 'You did not want to have a C-section,'" Ruth Jacques said.
"And I said to him: 'So, are you implying that I killed my baby?'"
Ruth Jacques said the doctor unfolded his arms and wrapped one under his cheek. He didn't answer.
When the meeting adjourned, Ruth said, she met separately with a Winnie Palmer neurologist. "I was informed that my child would 'never walk, talk or ever be able to do anything for himself. He would live in a vegetative state.' "
At first, the couple resisted removing life support. "We were praying that God would help," she said.
But the strain became unbearable, the couple said. They said one doctor told them: "If you really believe in God, why would you do that to your child?" The family relented.
"That was the hardest decision for us to make," Jean Jacques said.
Ruth and Jean Jacques and extended family members gathered round the newborn as a musician played soft and somber notes on a guitar. Someone recorded Reggie's heartbeat on a disc and handed it to his father. A doctor shut off the ventilator, then pulled the breathing tube from Reggie's mouth and throat, the parents said.
Reggie gulped for air. His mother covered her ears to muffle the sound of his gasping. Jean Jacques paced the floor. The couple fixated on Reggie's heart monitor and the clock just above it. It seemed like hours, they said. And then, unexpectedly, Reggie began to breathe on his own.
His Finest Outfit
Reggie lived another two months. He never left the hospital.
He wore his finest dress-up clothes only once — the day his parents buried him.
He was laid to rest inside an impossibly small white coffin, dressed in a short-sleeved, buttoned-down shirt and a tie that was too big for his slender body. The tie and shirt were both white, the color of purity.
The couple buried Reggie far from their home, at Greenwood Cemetery. They didn't want Ruth Jacques visiting her son daily. She needed time to heal.
But a year after her son's death, Ruth Jacques took a job as a grants coordinator with Orange County's government downtown, which is near Greenwood, a historic cemetery. Her son's graveyard is visible from her office. The boy who lived 96 days was laid to rest near Orlandoans whose full lives gave them prominence, including a U.S. senator and two mayors.
Jean and Ruth Jacques preserved Reggie's short life in pictures: His arms and legs stretched out like a wooden puppet from the contractures — a shortening and hardening of muscles and tendons — that brain damage wrought. An oxygen tube extended from his nostrils. In one photo, he appears to be looking directly at the camera, though the doctors had said he was incapable of such purpose.
Ruth Jacques found direction in her son's death, vowing not to let the same thing happen to other parents.
She took to her keyboard, writing to state lawmakers. And to the Florida Justice Association, a group of lawyers who represent litigants like her. Her email to the trial lawyers recounted Reggie's birth and death in detail. It covered seven pages and said Reggie "will always be a memory of a scar that will never truly heal." There was no response, she said.
She wants Lopez to remember, as well. And so, she said, every year on Reggie's birthday — and on the anniversary of his death — she files a new complaint with the Department of Health. It's a symbolic act, but she wants to remind the doctor that Reggie lived, and that he died.
"He is going on with his life, while we the families are stuck on yesterday."
Jean and Ruth Jacques, now 35 and 32, live in a modest home in Orlando. They're raising the little brother Reggie never got to know, 3-year-old Raphael. Another child, Reynaud, was born on Jan. 15. The money she received from NICA will never replace the loss, Ruth Jacques said.
"That's blood money," she said. "It's not going to bring him back."
