A Florida program designed to reduce doctors' malpractice bills strips families of their right to sue, offering instead a one-time payment and promises to cover medical expenses. Some parents report a bureaucratic nightmare that's anything but supportive.
This article was published on Thursday, April 8, 2021 in Kaiser Health News.
By Carol Marbin Miller and Daniel Chang, Miami Herald
A birth gone horribly wrong left Jasmine Acebo with profound brain damage and a bleak future, one defined by wheelchairs, mechanical airways, feeding tubes, frequent hospitalizations, in-home nursing and constant pain.
Unable to work, her overwhelmed mother became dependent on food stamps and sometimes cash assistance. She watched helplessly when her newborn convulsed with seizures. She saw her daughter turn blue and nearly suffocate during a feeding.
A Florida program promised help: medical care, money for expenses — a lifeline of support.
But that help, said Yamile "Jamie" Acebo, was often delayed, denied or deficient. And it included what she viewed as a shameful suggestion from a program administrator making a home visit: Would Acebo wish to place her daughter in an institution? The thought of Jasmine, surrounded by strangers and not the mother who loved her, was horrifying.
"I will care for her until the day the good Lord takes her home," said Acebo, a single mother living with her parents when Jasmine, her first child, was born.
In every other state but one, Jamie Acebo and hundreds of other parents like her could have pursued multimillion-dollar lawsuits to recoup the costs of raising a catastrophically disabled child. But a Florida law enacted in 1988 — to reverse what advocates and lawmakers called an exodus of obstetricians fleeing high malpractice insurance premiums — stripped them of that right.
Florida's Birth-Related Neurological Injury Compensation Association, also called NICA, aims to lower obstetricians' malpractice costs while providing families of those who suffer the most severe birth injuries with monetary compensation and "medically necessary" healthcare. It prevents parents from suing, even if the doctor or hospital may have made an egregious mistake.
The law was also supposed to provide a dignified existence and financial cushion for families crushed by the delivery of an infant with devastating brain damage. But some parents say NICA is indifferent to their fears, anxieties and depression, and hostile to their needs.
Jasmine's special bed collapsed? Can't it be welded? NICA asked.
Jasmine's energy-hungry medical devices inflating the monthly power bill to $500? NICA offered $25.
Jasmine's outgrown her wheelchair? Stretch it out, said NICA.
"They were supposed to take care of her for the rest of her life," Acebo said. "They were nickel-and-diming me for 27 years."
A bill in 2013 could have made NICA more responsive to the Acebos and other families. NICA's executive director, Kenney Shipley, argued for its defeat. "Most of this is pretty silly since we are not here or funded to 'promote the best interest' of the children," she wrote in an email, and later predicted lawsuits against NICA if an "ambiguous standard" were adopted.
NICA pays parents of children with neurological injuries $100,000 upfront and promises a lifetime of healthcare, much of which actually comes from Medicaid, a different state program that insures impoverished and disabled Floridians. When a child dies, as Jasmine did in 2017, NICA pays families an additional $10,000 for funeral costs.
Appeals and internal records show that Jasmine's mother was one of many parents who spent years locked in frustrating fights with NICA after learning that $100,000 is woefully insufficient to care for a severely brain-damaged child. They say NICA doesn't inform them about benefits to which they are entitled, while rejecting or slow-walking coverage for therapy, equipment, medical treatments, medication, in-home nursing care — even wheelchairs.
To assess NICA's performance, reporters from the Miami Herald, in partnership with the nonprofit investigative news organization ProPublica, examined court records, board minutes, actuarial reports, state insurance records, emails, legislative records, medical studies, archival records and case management logs for deceased children, as well as Health Department and financial services reports. Two families provided reporters their full internal files. Reporters observed board meetings and interviewed parents, doctors, lawmakers, lawyers, ethicists and healthcare administrators.
The Herald filed a lawsuit seeking additional records, including unredacted case management logs for deceased children that would show how NICA handled claims. NICA administrators fought to keep the records secret, and a judge ruled in NICA's favor, saying families had a right to privacy.
Reporters examined all 1,238 NICA claims filed at the Division of Administrative Hearings, or DOAH, from passage until today.
The investigation revealed:
• NICA administrators narrowly define what medical care is necessary in a way that is far stricter than private insurance — or even the federal Medicare program. The program's definition of medical necessity ensures NICA spends less on care for children, causing friction and frustration.
The Herald found instances of NICA questioning the medical necessity of wheelchairs, medication, physical therapy — and extra feeding bags for a child with a gastrostomy tube.
"At some point, nickel-and-diming people has a diminishing return, if any return at all," Jim DeBeaugrine, a former head of the Florida Agency for Persons with Disabilities, said of NICA.
• If families push back, the program sometimes spends more money fighting them than it would have cost to provide help. NICA paid lawyers nearly $3 million to wage an 11-year fight against parents who sought compensation for giving up jobs and careers to care for their disabled children — a suit NICA ultimately settled, giving parents essentially what they wanted.
NICA paid $138,000 in legal fees and costs fighting a mother's request for $11,058 in reimbursement for a treatment that could help her daughter swallow. NICA turned down a mother's request for a wheelchair, modified van and an occupational therapy program for her child, then, when she appealed, twice hired a private investigator to tail the mother and son.
Even with the $100,000 one-time payment, NICA families often end up in financial hardship, generating requests that go beyond the scope of traditional insurance.
"A lawsuit against the physicians would have covered all of these expenses, but that right was taken from us," wrote one parent, David Morgan, who sought help buying a TV and other equipment for his bedbound, pain-wracked young daughter. The request was denied.
• While many NICA families live in constant financial jeopardy, NICA has an ever-growing stockpile of money: nearly $1.5 billion. The program doles out about $3.5 million annually to investment managers. NICA's lobbyists are paid nearly $100,000 yearly — a total of $888,000 since 2011 — to, among other things, fend off efforts at legislative reform.
After the Herald and ProPublica began investigating NICA, administrators hired a public relations firm for close to $100,000 annually to generate favorable press — and proposed an increase in money for NICA families, noting that it would be a public relations boon whether it passed or not.
"It's a scam," Alex Sink, Florida's chief financial officer from 2006 through 2010, said of NICA. "The pot is getting bigger, and people are feeding off the investments. They have no incentive to reduce the money in the fund in order to help parents. The priorities have gotten totally misplaced."
• The program has long resisted efforts to include the voices of parents on its board. NICA's board has never included a parent or an advocate for disabled or medically fragile children. In 2013, when a lawyer for NICA parents suggested adding a mom or dad, administrators refused to consider it. The program said adding a family member "could lead to the perception of favoritism by other parents" receiving benefits.
"We know that there is a lot of depression among the parents of medically complex kids and a high divorce rate," said Gwen Wurm, an assistant professor of clinical pediatrics at the University of Miami Miller School of Medicine. "We know that the siblings of medically complex kids are affected. Anything we can do to help maintain these families has benefits beyond the children themselves."
In the weeks ahead, the Herald and ProPublica will explain how NICA has saved the state's medical malpractice insurers hundreds of millions of dollars in payouts to families by shifting those costs onto Medicaid, which is funded by Florida and U.S. taxpayers. The news organizations will show how doctors and hospitals attempted to strip parents of their rights to make decisions for their children after those parents rejected NICA benefits in hopes of retaining the right to sue for malpractice.
Citing "the complex nature of [the] subject matter," Shipley, the executive director, and other administrators declined to speak directly with reporters, but they answered more than 100 questions by email.
The program said lawmakers "created NICA to solve a specific challenge and it has done so very well."
"We are proud to manage one of the state's most fiscally sound programs, maximizing the impact of every dollar," NICA said.
NICA said the program's $1.5 billion in assets does not present the whole picture. Administrators calculate at least $1.05 billion in liabilities for future expenses to care for those in the program.
"It is not 'extra' money to be spent freely," administrators said, "but instead must be carefully managed by NICA to ensure that it is available to provide quality care for children in need."
Administrators quoted a 22-year-old report from the Archives of Pediatrics and Adolescent Medicine, now called JAMA Pediatrics, which said NICA recipients were more pleased with the care they got than parents of other disabled children who filed lawsuits.
Not everyone is upset with the help NICA provides. In the early years after entering the program, Rock and Shawna Pollock fought with NICA constantly: over reimbursement for a blender, feeding bags, mileage to and from the hospital, home renovations and a device used to attach an iPad to their disabled son's wheelchair, records show. "They're trying to nickel-and-dime us," Rock Pollock said in a 2011 deposition involving his son's case, echoing Acebo's complaint almost to the letter. "Right now we're living in hardship."
But in a December interview, Pollock said his relationship with NICA has improved, and he now owes much to the program, which has helped the couple provide for Rock Jr. "The only people that's there for my family is NICA," the elder Rock Pollock said. "They take care of him."
Susan Camacho's grandson, Jesus Camacho, whom she is raising, also is a current NICA claimant. "NICA has never disappointed us," she said.
Modeled after a similar program in Virginia — the only other one in the nation — NICA emerged in an era when insurers blamed jury verdicts for escalating premiums on medical malpractice coverage for doctors, particularly obstetricians, whose errors could cause ruinous disabilities requiring a lifetime of care.
At the time, the Legislature also passed several laws to clamp down on verdicts — which were reported to be as high as $6.2 million in 1991, and as much as $33 million in 2017 (in an instance where the doctor was not a NICA participant), for cases of catastrophic birth-related brain damage. In addition to creating NICA, the Legislature passed laws in 1988 requiring voluntary arbitration, and pre-suit investigations to establish negligence prior to filing a lawsuit.
Lawmakers informally called the NICA legislation "the bad baby bill." Newspapers adopted the moniker.
Protecting Doctors
Since NICA's inception, 1,238 families have petitioned for coverage, an average of three claims per month. A little more than a third — 440 petitions — have been accepted for compensation. Of those approved, 143 children were deceased when their parents applied. Another 50 children died after their claim was approved.
But if NICA was a trade-off, many parents say it was one-sided. While the program provided discount-rate protections to doctors, hospitals and insurers, parents like Jamie Acebo believe it passed the pain onto them alone.
Not only are NICA parents excluded from the program's governance, but every member of the program's board of directors, all men, has a stake in blocking reform.
In addition to the chief operating officer of Florida's largest malpractice insurer, The Doctors Company, NICA's unpaid board includes two physicians, a hospital administrator and the board chairman, who is designated as the representative of Florida citizens. His day job is running an insurance agency. Board members did not respond to emails from reporters.
There are two physicians on the board, both of whom are obstetricians who participate in the program. They were each involved in a delivery that led to a NICA-compensated claim.
NICA, Acebo said, "wasn't created for me. It wasn't created for my kid." She added, "They had all the power."
NICA covers a specific type of injury to the brain or spinal cord of a newborn caused by oxygen deprivation during labor, delivery or immediately after birth. For NICA to compensate families in such cases, the newborn must weigh at least 2,500 grams (5.51 pounds) and the injury has to occur in a hospital. A child must be substantially impaired both physically and cognitively to qualify.
If the doctor has paid a $5,000 annual premium and the hospital has paid a $50-per-birth fee, families are prevented from suing. Some parents fight to avoid the program by arguing that their child's injuries don't fit the criteria. That can lead to expensive court battles with dueling doctors and anguished parents.
In the budget year ending on 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.
The program called its fees to investment managers "reasonable for the level of assets under management."
Flush with cash, 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. And unlike the standard settlement awarded to families, the money paid to NICA's attorneys has increased over the years — from $75 an hour to as much as $400, depending on the assignment.
The $100,000 lump sum paid to families dealing with hardship remains set at the same level as 1988, although it has half as much buying power. The $5,000 annual assessment for obstetricians is also the same as in 1988, even as the cost of every other type of insurance, including standard malpractice coverage, has gone up.
Also unchanged is the program's reliance on Medicaid. NICA has saved the state's medical malpractice insurers hundreds of millions of dollars in payouts to families by shifting some of those costs onto Florida and U.S. taxpayers through Medicaid — though that policy is currently the subject of a pending whistle blower lawsuit in federal court.
"Bad Baby"
Jasmine Acebo was born on July 26, 1989, at 6:06 p.m. Her time in NICA dates back nearly to the program's inception, making her mom — as much as anyone in Florida — an authority on the program, and her records, 4,639 pages of which were obtained by the Herald, an archive of its practices.
Her mother recalls the birth vividly.
Then barely 20, Acebo lay in her bed at Hollywood Memorial Hospital, groggy and exhausted. She had given birth for the first time two hours earlier, and she still hadn't seen her baby. Her cousin, who was working a shift that night as a neonatal intensive care nurse, walked in. She wasn't smiling.
Even through the fog, Acebo could tell that a somber Madeline Otero wasn't there to offer congratulations. "She had her nurse's hat on," Acebo said, "not her cousin's hat."
She handed Acebo a Polaroid: A tiny newborn, lost in a tangle of tubes. A ventilator in her mouth. A drain from her stomach. An IV in her scalp, the only place nurses could find a vein. A heart monitor. Wires and cables.
As the gravity of what she saw gripped her, Acebo silently prayed: Oh my God. Lord, save her. Heal her. Make her better so I can take her home. Heal my baby, please.
In an April 1993 deposition that was part of the NICA screening process, NICA's paid medical expert said that during Jasmine's delivery the doctor trying to break Acebo's water pierced the placenta that carried blood and oxygen to her brain. As her lifeblood drained away, so too did any chance for Jasmine having a normal life. What she would have in abundance — besides unrelenting pain — was her mother's devotion.
Jamie Acebo faced a future she could not comprehend. A friend, a paralegal who had just delivered a stillborn baby, made an appointment for Acebo to see a lawyer and accompanied her to the consultation. When Acebo described the case to the lawyer, he told her about NICA.
In his sworn testimony, the NICA expert described how, most likely, Jasmine's placenta was inadvertently punctured during an attempt to hasten labor. Her heart rate plummeted from the normal 140 beats per minute to 65.
"That's bad, isn't it?" the expert witness was asked under oath.
"It sure is," he replied. "It's as if they shut off the blood supply of this kid."
During Jasmine's birth, an expert said, the doctor trying to break Acebo's water pierced the placenta that carried blood and oxygen to the baby's brain.
"They got what we would consider to be a less-than-optimal infant," the expert said. In more stark language, he called Jasmine a "bad baby," apparently referencing the law's nickname.
Frank Rainer, general counsel for Memorial Healthcare System, which owns the hospital where Jasmine was born, said in a prepared statement that "even with the best intent, the best medicine and the most skilled experts, there is still a possibility of a negative outcome anywhere in medicine."
He added: "High risk obstetrics has become a challenging service to provide in our community because of the small pool of highly specialized physicians available and the risk of costly litigation in this field." Reporters were unable to reach the obstetrician who delivered Jasmine in 1989.
Most children accepted into NICA are diagnosed with an injury called hypoxic-ischemic encephalopathy — one of Jasmine's conditions — in which oxygen deprivation and limited blood flow cause damage to a baby's brain during childbirth. The condition can result when the umbilical cord is wrapped around a baby's neck or when a mother's uterus ruptures. Delays in performing Cesarean sections can contribute to brain damage.
When NICA was signed into law, Florida OB-GYN insurance premiums were among the highest in the country, especially in South Florida. NICA claims the program has reduced medical malpractice premiums for obstetricians from what they would otherwise be by between $62,000 and $88,000 a year — and $1,200 to $1,800 annually for all other doctors. An actuarial study of NICA reported by an organization of Florida OB-GYNs in 2015 arrived at a similar conclusion, finding that the program saved obstetricians on average $57,535 a year in the cost of their malpractice insurance.
That said, obstetricians in Miami-Dade and Broward counties still pay among the highest malpractice insurance rates in the nation — higher than doctors in states without a NICA program.
NICA said Florida continues to experience a medical liability crisis because of excessive lawsuits, but that "the situation is unquestionably better than it would have been if not for NICA."
"Having Your Stomach Ripped Out"
R. Fred Lewis both defended and sued insurance companies before then-Gov. Lawton Chiles appointed him in 1998 to the Florida Supreme Court. He and his wife, Judy, also raised a severely disabled child, although one not covered by NICA. He likened learning of his daughter's disabilities "to having your stomach ripped out."
"That pain of not knowing what will happen when you are not around — that is a devastating burden to carry," Lewis said of his now-deceased daughter, Lindsay Marie.
Lewis, now a law professor at Florida Southern College, called the claim that doctors were fleeing the state — the justification for NICA and other lawsuit restrictions — an "absolute lie."
"But if you tell a lie long enough and hard enough, people will believe it," he said.
Far from a loss of obstetrician-gynecologists, the number of Florida OB-GYNs actually grew from 546 in 1975 to 911 in 1983 to 1,047 in 1987, the year before NICA was adopted. That's a 92% increase during a time when Florida's population grew 70%. As of last June, the most recent tally, the number of Florida OB-GYNs hovered around 2,000. NICA administrators, however, say there was "an actual exodus of obstetricians from the state's hospital delivery rooms" before NICA's passage as some chose to limit their practice to gynecological care.
Lewis said NICA was in fact part of a broad-based state and national movement aimed at expelling jurors from the civil negligence system — an effort that sought to minimize compensation for plaintiffs by leaving justice in the hands of administrative judges, who are appointed by the governor and Cabinet and don't answer to voters.
"They are trying to do away with jury trials in the state, and I find it very troubling," he said.
Just Say No
NICA says it is set up to pay families for the treatments and services they need. But an examination of thousands of pages of court records and internal documents found that the answer to many requests is no.
A mother wanted a nurse to care for her child on the school bus. "NICA does not pay for nursing services at the school," the program responded.
A father requested a blender to puree fresh fruits, vegetables and meat for his 5-year-old son's feeding tube. "We need a medical reason why [the child] needs blenderized food rather than baby food which is already pureed and available," an administrator said.
A parent asked for a higher electric bill subsidy during Florida's sweltering summer. "AC is wonderful and we all want it, but it is not medically necessary," the director, Shipley, wrote.
And NICA sometimes rejects a specific request from one family only to approve it for another family later. A case manager told Acebo that NICA could not pay Jasmine's longtime personal nurse while Jasmine was hospitalized with gallstones in May 2016. This past year, the program offered to do exactly that for two other families whose children were hospitalized with COVID-19, calling the pandemic "extraordinary and unprecedented."
In its dispensing of care, NICA typifies much of the state's effort on behalf of Floridians with special or critical health needs: Florida ranks near the bottom for virtually every measure of the state's spending on services for people with disabilities.
"NICA is set up like most insurance companies," said Sean Shaw, who served as the state chief financial officer's consumer advocate from 2008 through 2010. "It's set up to not pay claims."
When deciding which requests to grant as "medically necessary," NICA staff, including those with training in healthcare fields, often defer to Shipley. The executive director, paid $176,900 a year, is a former insurance claims adjuster and is not a doctor.
Hired in 2002 at $118,000 a year, Shipley, who supervises a staff of 16, currently makes $30,000 more than the director of the state Agency for Persons with Disabilities, who heads a department with 2,700 employees.
Though NICA may function like an insurance carrier, some of its practices exist practically nowhere else in the insurance world.
Nearly every time they submit a bill, parents are required to sign "perjury statements" attesting at the risk of criminal prosecution that they are not committing fraud. That includes minor invoices for blood work, medications and travel to doctor appointments.
A mother complained to NICA about the suspicion she endured when trying to get reimbursed for her child's medications: "She spoke for about six minutes straight as to how humiliating it is for her to deal with NICA" and "having to deal with employees who laugh at her and her troubles," a case management log said.
NICA said the perjury statements are a safeguard "to prevent healthcare fraud" after "unfortunate instances of some claimants falsifying documents and misrepresenting payments when seeking reimbursement." The Herald asked the agency for examples of such fraud. NICA said it would not provide specifics.
Trapped in Her Room
By the time she was 2, Jasmine had a permanent feeding tube and a tracheotomy to help her breathe. She constantly cried, and rarely slept, meaning Acebo rarely slept, "awakened by Jasmine's gasping and choking," the family's lawyer wrote at the time. Jasmine required round-the-clock care.
The entire family sacrificed for Jasmine's needs. Jamie's younger daughter and son missed family Thanksgiving dinners and her church's Easter egg hunts. The younger daughter could never play on the school soccer team or be a cheerleader. Her son never got to join the football or basketball teams.
By the time she was 11, Jasmine had a pump for her feeding tube, a pulse oximeter, a tank of concentrated oxygen, a humidifier for her artificial airway, a nebulizer and other equipment paid for mostly by Medicaid.
From the day of Jasmine's acceptance into NICA in June 1993, Acebo said administrators did virtually nothing on her behalf until either she or her daughter's nurse begged them.
By age 11, Jasmine had a pump for her feeding tube, a pulse oximeter, a tank of concentrated oxygen, a humidifier for her artificial airway, a nebulizer and other equipment paid for mostly by Medicaid. The family got a wheelchair-accessible van from NICA to transport Jasmine.
When Jasmine was 13, she, Acebo and her 70-year-old grandmother were living in Acebo's 993-square-foot childhood home in Hollywood, Florida. The hallways and bathroom were too tight for Jasmine's wheelchair, requiring two people to lift her 73-pound frame. She was sponge-bathed in bed, and her hair was washed in the kitchen sink, Acebo wrote in a two-page letter to NICA, pleading for help in August 2002.
"I love my daughter dearly and I am only requesting on her behalf a reasonable solution so that we can improve her quality of life and make her as comfortable as we possibly can make it for her."
Records show NICA paid for a home modification a year later.
Over time, as Jasmine needed more medical equipment, Acebo's electric bill spiked from about $100 per month to $500, she said. Acebo was struggling to hold a job and keep up with her bills. In 2007, the electric company threatened to shut off the power when her unpaid tab rose to $2,099, records show.
NICA paid what was in arrears, then made Acebo pay the program back in twice-monthly $50 installments, records show. In an email to reporters, NICA called the "no-interest loan" a "goodwill gesture beyond the regular support provided to the family." At the same time, NICA caseworkers offered Acebo an electricity offset of $25 per month for future power bills.
It was then that NICA mentioned it could pay Acebo to care for her daughter at home. That was news to Acebo. For the first nine years of Jasmine's life, Acebo said, Medicaid was paying for four hours of in-home nursing care daily, meaning that Acebo became her daughter's de facto nurse the rest of the time, suctioning her artificial airway, filling her gastrostomy tube and managing other medical equipment.
Now she learned that NICA could pay her a minimum-wage salary to stay at home and do those things. It had been that way for years.
Acebo asked about back pay. NICA said no.
Because her daughter needed constant supervision — and Jamie Acebo needed to sleep — Acebo retained in-home nursing. But the nurses she could hire at Medicaid's low reimbursement rates often were unreliable, a common refrain among NICA parents hamstrung by the low payment schedules. In one 2006 instance, NICA's case management log shows she called to report that "the night nurse was sound asleep, the humidifier was empty of water, the machine was very hot and Jasmine was having trouble breathing."
Some of Acebo's greatest frustrations involved getting Jasmine from place to place: Acebo said, and NICA's records largely confirm, that she struggled for years with wheelchairs that were too small for Jasmine's expanding frame, with a stuck wheelchair lift on her van and with the van itself, which constantly broke down.
NICA told reporters it bought Acebo a wheelchair in 1999 and adjusted it in 2001. Jasmine's log noted four years later: "Old chair cannot be made any bigger."
"They kept modifying the same wheelchair," Acebo said. "I'm telling them the wheelchair isn't fitting her properly and they're just sending out mobility companies, and the guy is coming out and saying, 'Look, we can't stretch it out anymore.'"
NICA bought Jasmine a new wheelchair in February 2006, at a cost of $7,751, the log said.
In the ensuing 11 years, Jasmine's muscles and joints stiffened, a common condition among people with cerebral palsy. Her legs gradually drew up, splaying her knees outward — and drawing her feet inward — as if in some cruel, lotus-like pose. It eventually became impossible for Jasmine to fit in the chair, Acebo said. There is no record of Jasmine getting another wheelchair. NICA administrators said they never turned down a request for a new wheelchair, but Acebo said NICA already knew Jasmine's had reached its limit and could no longer be expanded.
Jasmine, who had been taken for long wheelchair strolls around the neighborhood, even trick-or-treating in her previous one, became a captive, Acebo said. "She doesn't go outside anymore. I don't have a way to get her outside," Acebo said she told NICA.
Jasmine's van was a similar story, Acebo said. In July 2002, NICA provided Acebo the modified van. By May 2005, the van's wheelchair lift was broken, and it took nine months for the repairs — authorized and paid for by NICA — to be made, records show. After that, Acebo said the van was frequently inoperable, and it sat in her driveway corroding with rust.
In April 2011, NICA signed over the van's title to Acebo. "NICA will no longer pay repairs or insurance," the log said. Henceforth, the notation added, the program would "pay for ambulance transportation for Jasmine when she needs to go to the doctor's office."
NICA told the Herald that the van "went unused for long periods of time" and that Acebo "did not submit a request for another van." Acebo said the van went unused because it was always broken. She said NICA knew Jasmine was entitled to a new van — or should have known. The handbook says vans will be replaced at "approximately 7 years or 150,000 miles." Acebo's was older than that.
In response to questions from the Herald and ProPublica, NICA said that using ambulance rides instead of replacing the van was "a better fit for meeting the needs of the family, and that the family was pleased with this result." Acebo said she was anything but pleased.
Jasmine's many doctor appointments were now especially challenging, Acebo said. She would call an ambulance or transport service to take Jasmine from her home to her North Miami Beach pediatrician. But the stretcher was too big to fit in the office elevator, and the doctor would descend to the lobby and examine Jasmine there — in front of strangers — or, alternatively, in a storage room.
When Acebo complained to NICA about her daughter being on display, caseworkers suggested she find a doctor who would make house calls, she said. Acebo found a doctor whose office had wider elevators.
One saving grace was that the ambulance rides were Jasmine's sole contact with the outside world: sunlight streaking through the windows, a breezy gust before entering the building, people to watch in their go-to-work clothes. "Then she would come back home and go into that room," Acebo said.
In the fall of 2016, Jasmine developed her first pressure sores during hospitalizations for gallstones. Her doctor prescribed a specialized $900 air mattress to prevent the bedsores from worsening, but Medicaid refused to pay. "I'm not going to have my kid suffer," Acebo wrote to her caseworker, "while Medicaid jerks me around with all this red tape."
Acebo faxed over prescriptions and emailed color photos of her daughter's wounds. Her caseworker replied in a Nov. 17, 2016, email: "Neither physicians orders, nor supplier-prepared statements, nor physician attestations by themselves provide sufficient documentation of medical necessity."
NICA agreed to pay the next week.
Fighting Parents
By strictly defining what medical care is necessary, NICA administrators were able to hold down costs. Asked by a NICA attorney what constitutes medical necessity, one of NICA's pediatric neurology consultants offered this explanation in a 2005 sworn statement: "If it were not administered, there would be a worsening of a patient's medical situation." Parents, trying to give their children the comforts and care that other families take for granted, bristled.
David and Esther Morgan encountered NICA's interpretation of medical necessity in 1997. NICA refused to pay for a TV and VCR so 3-year-old Melinda Morgan, at the time enduring the misery of kidney stones and compression fractures on top of her profound birth injuries, could watch educational videos in her bed and, in the words of her behavioral therapist, "escape the pain and frustration of her physical condition."
Her father appealed and was grilled in a deposition by a lawyer from NICA, who asked him to swear that no one else in the family was watching the TV.
Even with Morgan's assurances, NICA rejected reimbursing the $500 cost of the TV and VCR. The family's conflict with NICA would expand into a years long legal fight over an ever-increasing list of issues, ranging from in-home nursing care to high electric bills to accessibility modifications for the Morgans' home. NICA didn't like the judge's ruling, appealed, then settled in an agreement that remains secret except for the cost of the lawyers: $172,000.
Despite the long slog through the courts, David Morgan still relies on NICA to help with his fragile, now 27-year-old daughter, and he has made his peace with the program.
"NICA has turned out to be a lifesaver. I would be in total bankruptcy if it weren't for NICA."
"The Ills of Pandora's Box"
NICA's legal clash with Flor Carreras over a new therapy that could free her daughter from a lifetime attached to a feeding tube also included administrative hearings, entreaties to an appellate court — and a $2,009 trip to Costa Rica by NICA's then-administrator and a consultant.
Starved of oxygen in the womb, Maria Theodora Carreras was born in February 1989 with severe brain damage — years later, a neurologist wrote, she was still functioning at the "newborn" level — and dysphagia, a disorder that makes it difficult to swallow and causes chronic lung infections and recurring fevers.
Carreras, who could not be reached by the Herald, found hope for Maria Theodora in a Hungary-based doctor who used electrical stimulation of the palate and throat muscles to help children overcome the disorder. Maria Theodora's pediatrician and therapist recommended the therapy. She asked NICA to pay for it.
NICA said no, warning in a legal pleading that approval would "literally unleash the ills of Pandora's Box against the [program's] funds." Carreras took Maria Theodora to Budapest anyway and she then asked an administrative judge to make NICA reimburse her for the treatment and travel expenses.
The judge wrote that Maria Theodora was later able to swallow water from a bottle, as well as bits of banana, mango and peaches. She also had fewer fevers, a stronger cough reflex, and less drooling and wheezing — evidence of decreased aspiration.
Carreras' determination to give her daughter the pleasure of eating would prompt a three-year legal battle — and a trip by NICA's then-administrator, Lynn Larson, and a consultant to the former Miami family's new home in Costa Rica to judge for themselves whether the girl had benefited. In December 1995, a Miami appeals court sided with Carreras, ordering NICA to pay for the treatment — and the litigation.
Larson declined to discuss NICA, citing a nondisclosure agreement she signed when she left the program in 2002.
At a Miami hearing that year, Maria Theodora's pediatrician, Dr. Alberto Saenz Pacheco, accused NICA's attorney of trying to force Carreras to abandon hope that her daughter might someday eat on her own. "You're just condemning her to the tube feeding the rest of her life," he said.
The total bill for Maria Theodora's treatment was $11,058. The fight over it: $80,000 in fees and costs for the family's lawyers, whom NICA ultimately was ordered to pay, and about $44,000 for NICA's own lawyers.
Celia and Curt Lampert's 23-year battle with NICA has so far included three appeals to the Division of Administrative Hearings, a class-action lawsuit and two trips to the First District Court of Appeal in Tallahassee. The family's relationship with their son Tyler's healthcare provider became so antagonistic that NICA twice hired a private investigator to tail them.
The Lamperts declined to discuss Tyler or NICA, but documents detailing the agency's history with the family show NICA administrators were suspicious that the parents were exaggerating Tyler's needs.
In December 2003, Curt Lampert called NICA's claims manager. "He is upset because he feels that we are playing God with his son's health," said the log entry. "He went on to state that he didn't think Kenney [Shipley] or I cared."
After the Lamperts appealed NICA's denials, the program hired a Pompano Beach private investigator to shadow the family, which, by then, was in the process of moving to a suburb of Atlanta. The investigator billed for nine days of surveillance during two weeks in August 2005, including airfare, a hotel, rental car, meals and video, for a total of $10,387.
The investigator reported the quotidian details of Celia Lampert's life: Lampert takes her son to an appointment at Sunshine Therapy. Lampert takes Tyler to Wendy's. Lampert walks her "two small dogs on leashes." Lampert buys dinner at a Burger King drive-thru. Tyler and his mom visit Blockbuster Video. Tyler swims inside his hotel swimming pool and dries himself with a blue towel. Mother and son shop at Target and later eat at Chuck E. Cheese.
Without addressing the Lamperts directly, NICA told the Herald it hired the investigator — the only time it did so — because the program "perceived inconsistencies between a child's medical condition and [the] family's requests related to the child's condition."
The Lamperts' battles with NICA included requests for a wheelchair, as well as a therapy designed to improve the muscle tone in Tyler's arm — which NICA rejected. In an August 2005 order, an administrative judge said that, in denying the wheelchair, NICA "failed to objectively consider Tyler's limitations, and overlooked the testimony" of its own expert — who had said a wheelchair was "appropriate for [Tyler's] use."
A fight over compensation for the Lamperts' caregiving hours prompted more litigation, beginning with a 2006 class-action lawsuit filed on behalf of NICA families by Tampa lawyer David Caldevilla. The suit sought to enforce the law requiring NICA to pay parents for the time they spent as unpaid nurses — even as some of them had been forced to quit their jobs to perform that role.
Fifteen months after the lawsuit's settlement in November 2012, Shipley told the Lamperts they were eligible for up to 12 hours per day of paid caregiving. But the administrator rescinded the offer amid a disagreement over how much care Tyler required and whether the couple was owed back pay.
In 2015, Administrative Judge Barbara Staros ordered NICA to restore the original offer of 12 hours of paid daily caregiving.
In a footnote, Staros weighed in on one of NICA's accusations against Celia Lampert, whose zealous advocacy for her son had so bedeviled NICA.
She wrote: "NICA's characterization of Mrs. Lampert's role in Tyler's [care] as 'over-active involvement and manipulation' is rejected."
Over 11 years, the class-action battle cost NICA $2.8 million, spread among 10 law firms.
NICA was also forced to pay Caldevilla $96,610 in legal fees and costs for representing the Lamperts. NICA has spent $412,986 in legal fees battling with Tyler's family, some of which is included in the $2.8 million. That means, in total, NICA has spent just shy of a half-million dollars in litigation wars with the Lamperts.
"Without Care or Kindness"
NICA administrators and their allies long have maintained that families were satisfied with the program and grateful they were spared the uncertainty and heartache of a protracted malpractice litigation.
"Recipients are seen to be receiving excellent care, and participating families are overwhelmingly satisfied with the level of service, and they support the system," the Florida Obstetric and Gynecologic Society wrote in a February 2007 report.
NICA's own records over the past two decades raise doubts. Around 2001, seven NICA families complained to the state's insurance commissioner. They said Larson, executive director at the time, never disclosed the benefits they were entitled to receive, failed to meet some "covered needs" and showed "favoritism" in dispensing care, minutes of a NICA board meeting say.
Shipley was hired the next year, the program said, and made several changes, including developing NICA's website, producing the program's first benefits handbook and ensuring parents knew about some benefits, such as reimbursement for gas and mileage.
Another round of complaints — this time to lawmakers — prompted a second survey. But this one, completed in 2012, reached a far different conclusion: that most NICA families were happy. The survey noted that many parents wanted NICA to switch to direct deposit for reimbursement and caregiving checks, and that many families found the program's benefits handbook "confusing."
It took seven years after that for NICA to make electronic banking available to families. The agency said the process was time-consuming and required multiple security measures to protect sensitive information.
The two surveys had key differences: About 85% of NICA parents responded to the first survey. Half of the families ignored the second one. And while the first survey was administered by the state insurance commissioner, the second was done by one of NICA's lobbyists, whose firm has been paid more than $440,000 since 2011 to represent the program.
In 2017, the parents of Delaina Parrish — a NICA child who astonished and delighted doctors by graduating from college last year and launching a career despite her physical disabilities — attended a board meeting to urge administrators and board members to "help families." Patricia and Jesse Parrish said NICA staff was "denial-driven," not motivated by compassion, wouldn't publish meeting dates and set arbitrary limits on what they'll pay for.
The Herald asked the Parrishes late last year if the program has improved since then. Patricia Parrish said she is disappointed NICA still has not added a parent to the board, doesn't inform parents of new benefits and won't encourage other parents to attend meetings and offer input.
She said: "Why do they get to play God?"
Though unable to communicate verbally, Delaina Parrish uses a computer that tracks the movement of her eyes and generates words and sentences on a monitor or through an automated voice. The technology was provided by the manufacturer, not NICA.
Now 23, the University of Florida grad has a consulting business and a platform from which to advocate for others with disabilities. She was accepted into NICA when doctors believed it was likely that the 11 minutes she was deprived of oxygen at birth, requiring resuscitation, would impair her mind, as well as her body. But Parrish's intellect is as vibrant as any.
In a recent interview, Parrish said the program looks only at "what is required at the minimum" when deciding whether to help those in its care.
"If we don't have their financial support," she added, "we can't live our best lives."
NICA disputes that administrators don't make families aware of their benefits and options. The program "regularly informs families in advance about care and services that might improve their situation," administrators said.
Delaina Parrish, a NICA child who graduated from the University of Florida last year and launched a career despite her physical disabilities, is able to communicate because of a machine that translates her eye movements into words. The device came from the manufacturer, not NICA.
As an example, the program noted it offered last year to buy $29,000 robotic "exoskeleton" suits to help some children strengthen the muscles in their legs. "NICA staff contacted all families with a child who could benefit from" the technology, NICA said, "and then assisted them with the process to get this new equipment capable of improving their daily lives." Five clients have gotten them so far, NICA said.
The publicist NICA hired to burnish its image urged news organizations to publish stories about the device. Shipley, the executive director, said in an email to the technology's developer that NICA was "looking to do a positive news story" about the equipment.
In the months after NICA hired its media consultant, the program did something it had resisted for most of its 33 years: It considered legislative change.
Once before, lawmakers introduced a bill that would have required NICA to operate with greater transparency and "in a manner that promotes and protects the health and best interests of children" in its care.
That bill, in 2013, required NICA to inform families in writing each year of the "types and full amounts of benefits available from the plan for the injured child's" projected needs. And it proposed adding a NICA parent or guardian, as well as a Florida lawyer, to the board of directors.
That's the legislation that Shipley dismissed as "pretty silly" in a 2013 email to NICA's lobbyists. One board member warned that while the proposals "sound innocuous," they could result in "all sorts of bad law" being forced upon the program. Another board member wrote: "If it's not broken, don't fix it."
The bill died in committee.
Now, with the public relations firm brought into the fold after the Herald submitted a series of public records requests and questions to NICA, the agency is proposing legislation. It would increase the one-time parental award from $100,000 to $250,000. The bill was amended to raise the death benefit from $10,000 to $50,000.
Even if it isn't approved, the proposal could serve a second purpose, one of NICA's publicists noted in a February 2020 internal email: "Making a public announcement about [it] would help greatly to insulate NICA against media criticism."
A Rented Casket
Every year, Jamie Acebo wondered if it would be her daughter's last. Her last birthday. Her final Christmas. The last time hearing her siblings tease each other around the dinner table.
In the spring of 2016, Jasmine was hospitalized with gallstones. Jamie Acebo had other children at home, so she arranged for Jasmine's nurse to work her shift at the hospital, ensuring Jasmine was repositioned and bathed, her airway suctioned, her feeding pump refilled properly.
Acebo and Jasmine's nurses recognized the subtle, nonverbal signs others missed: Jasmine would grind her teeth and bite her lips when she needed medicine for the pain. That was the only way they knew, and could ask for pain medication.
When NICA administrators found out about the NICA-paid nurse deployed to the hospital, they moved to claw back $2,240 from Acebo — money she didn't have.
"We are not required to pay a private professional caregiver during a hospital stay," Shipley wrote.
After an attorney pleaded Acebo's case, Shipley offered to let Acebo repay the money in $25 weekly installments.
In the winter of 2017, Jasmine was hospitalized again with gallstones, and her prognosis wasn't good. Because of Jasmine's fragile state — and her profound disabilities — none of Jasmine's doctors was willing to perform necessary surgery. "Right now it's in the hands of God," Acebo wrote in a Feb. 27, 2017, email to her caseworker. Acebo said she was repeatedly encouraged to sign a "do not resuscitate" order.
Jasmine's mom said, and wrote in emails at the time, that one of the doctors reminded her that Jasmine was "not a productive member of society" and had, in any event, exceeded all expectations by living more than a quarter-century.
"You know, she's had a lot of miracles, and I think hers are just about up," Acebo said she was told by one of Jasmine's doctors.
Acebo's answer: "If God wants her, he's going to have to come and get her, because I'm not signing a DNR."
But as Jasmine's condition worsened, doctors warned Acebo that the stress of reviving her would result in cracked ribs, one more excruciating indignity for a daughter who had endured them all her life.
On March 19, 2017, Acebo signed the DNR. She held Jasmine's hands, stroked her face and whispered, "Mommy loves you."
"You don't have to fight for me no more," Acebo said. "You can go home."
"And, once I said that, the monitors just started to go down."
The last entry in Jasmine's NICA case management log is a payment to a funeral home.
Even in Jasmine's death, Acebo felt betrayed by the program. Acebo was left with a choice: She could afford a funeral, or a burial, but not both.
The $10,000 NICA pays as a death benefit was adopted in 2003, nearly two decades ago. Costs have gone up.
Though Acebo's Baptist faith eschews cremation, it was the only choice she could make — a casket burial was beyond her means, she said. For $3,500, she rented a casket, which was returned after the service. Jasmine was then cremated.
Jasmine's ashes rest in an urn atop the dresser in Acebo's bedroom in her Pembroke Pines home.
NICA administrators told the grieving mom to forget about the remainder of the $25-a-month repayments.
On the day after Jasmine died, Jamie Acebo received an email from NICA. Administrators were mailing Acebo her final paycheck for her time taking care of Jasmine. Total earned: $1,050.00.
But NICA was not yet paying by direct deposit, despite parents clamoring for that in the survey five years earlier. Acebo received her checks by FedEx, and the delivery service costs had piled up. NICA insisted on being reimbursed.
As the winter's surge of coronavirus cases overwhelmed Los Angeles hospitals, EMTs like Michael Diaz were forced to take previously unthinkable measures. What lasting impact will the pandemic have on America's first responders?
This article was published on Wednesday, April 7, 2021 in ProPublica.
It was 4:32 p.m. and Mike Diaz was almost halfway through another punishing 24-hour shift when the call came over the ambulance radio. Nine miles away, a man had lost consciousness. "We're en route from Palmdale Regional," Diaz told the dispatcher, pushing away the thought of grabbing some food, as he flicked on the lights and sirens and sped off into the suburban maze of the Antelope Valley. He had worked as an emergency medical technician here in the northernmost part of Los Angeles County for over a decade, but he still experienced the same thrum of adrenaline on urgent calls. Lately, however, on January afternoons like this one, his excitement was overpowered by a sense of futility and dread.
A few minutes after the dispatcher's call, Diaz backed the ambulance into the driveway of a single-story house with a white picket fence. He and his partner, Alexandra Sanchez, followed a paramedic from the fire department into a dim living room, where an old man was stretched out on a cot, grimacing in pain. As Diaz crouched to check the man's vitals, a middle-aged woman said that she had first noticed her father, who was 88, becoming less coherent around a week ago. The man was more confused than usual, and contractures had stiffened his thin legs into tent poles. Their primary care doctor wasn't picking up the phone. Still, the family held off on dialing 911 because they feared that sending him to the hospital would expose him to the coronavirus. Only now that his condition had worsened had they decided to make the call.
As the daughter spoke, Diaz uttered short affirmative phrases. At 31, he is brawny and compact, with a smooth face, alert eyes and spiky black hair that lends an extra inch to his height. He was used to the brutal rhythms of emergency medicine in the Antelope Valley. The bustling community of 450,000, an hour's drive north of Los Angeles, has only two hospitals and some of the county's poorest and sickest residents. Diaz was overworked and proud of it, driven by the intoxicating rush of saving lives. Even when the 911 system was under strain in the past, he could take for granted that there would be enough resources — supplies, space and staff — to tend to patients. What he lost in sleep and free time he'd always earned back in the satisfaction of helping people. In a job that paid low wages and demanded extreme sacrifice, he'd come to rely on that feeling.
Now he could no longer count on it. The recent explosion in coronavirus cases — an over 900% increase in LA County from November to January — had left the healthcare system on the verge of collapse. In this new climate of scarcity, the more people there were who needed help, the less EMTs could do to help them. Peering down at the pale old man before him, Diaz was gripped by doubts: Could he still call himself a caretaker when he couldn't properly care for his patients?
Ten minutes later, as he swung left into Antelope Valley Hospital, Diaz was dismayed to note the first signs of gridlock: Five ambulances were already parked in the bay. Diaz and Sanchez wheeled their patient toward the back entrance of the emergency department, where they joined a phalanx of other gurneys. A mother and her crying infant. A man whose legs had swollen up like the limbs of a balloon animal. A woman whose wrists were in restraints. She'd spat at the EMTs who'd brought her in and, because they couldn't find a mask, they'd placed a white napkin over her face. "It looks like it's one of those days," Diaz said.
In the alcove beyond the check-in desk, Sanchez and Diaz installed their gurney along a vacant stretch of beige hallway. Before the pandemic, an 88-year-old man in an altered state of consciousness would be attended to fairly quickly to rule out an infection, prior brain injury or stroke. Today, every bed in the ER was occupied, and Diaz and Sanchez had been relegated to the limbo known to EMTs as "the wall." The term refers to the uneasy period of waiting with a patient until a bed becomes available. Even in quieter times, it was common in the Antelope Valley to "hold the wall" a few times a week. But now crews were waiting to offload patients two or three times a day, and the waits kept getting longer. A few weeks earlier, Diaz had been on the wall at Palmdale Regional Medical Center for 14 hours straight. Around Christmas, Sanchez had dropped off a patient only to see the person still waiting for a bed on her next shift, 30 hours later. Someone had etched tick marks onto one of the hospital's corridors, like an imprisoned soldier counting his days in captivity.
Diaz noticed his patient was struggling with a pair of blue gloves. "I'll help you put those on if you want, sir," he said. "Just let me take your temperature." His gestures were attentive, precise.
The glass doors of the ER slid open and another EMT poked her head through to scan the crowd. "It's a party in here," she said, before returning outside to tend to a heavyset man who was shaking uncontrollably.
"Is your pain still a 10 out of 10?" Sanchez, who is 26, asked their patient. She has a radiant complexion and a serene bedside manner.
"I can't hear you," he said. Down the hall, a heart monitor pinged. The infant continued to wail.
"Your pain," she said, raising her voice above the din. When she leaned over him, her ink-black bangs hung above her mask. "Still a 10 out of 10? Is your pain still really bad?"
She couldn't tell if he was nodding in agreement or simply adjusting his head. Either way, there was nothing to do now but wait.
With its flashing lights and whooping siren, the ambulance has become a symbol of a catastrophe that has unfolded largely behind closed doors. At the start of the pandemic, Diaz hoped the elevated profile of EMTs — their "essential" role — might lead to improvements in the way that emergency medical services are run. But so far, nothing had changed. If anything, the situation had gotten worse.
In Los Angeles County, as in many parts of the U.S., for-profit companies operate the ambulance system. The contract for the north part of LA is held by American Medical Response, the largest ambulance company in the nation. Along with paramedics from the fire department, EMTs employed by American Medical Response handle all of the emergency medical calls in this "exclusive operating area," a roughly 1,500-square-mile dominion that includes the cities of Palmdale and Lancaster, a smattering of quarries and aerospace factories, and swaths of the Mojave desert.
Spending as little as possible is crucial for all parties involved. The government, which pays for the majority of ambulance trips in many parts of the country, wants to save money. And AMR, of course, makes more if it keeps costs down. Diaz is particularly attuned to this dynamic: He represents around 350 AMR employees as president of an EMT union's local.
Los Angeles County mandates that ambulances reach patients within 8 minutes and 59 seconds. To meet this deadline while maintaining profit margins, private companies deploy a thin fleet of ambulances, pay low wages (private-sector EMTs in California make 39% less than their public-sector counterparts) and strategically rearrange the vehicles in their command. AMR's software suggests that vehicles "post" near busier areas so they're more likely to encounter transport opportunities. On hectic days, dispatchers maneuver crews around like chess pieces.
"We're not unlike other parts of emergency healthcare — we're very lean," said Tom Wagner, president of AMR's western operations. "When dollars are tight," he said, citing low Medicare reimbursement rates, "decisions have to be made about where we station ambulances, how we station ambulances, and do we move them around more often?"
The wave of coronavirus cases that swept across the country late last year put even the most battle-hardened EMTs under unprecedented psychological strain. "All of the structural shortfalls of our industry were really borne by EMTs and paramedics who were at the patient's side, caring for them without the resources that they needed," said Aarron Reinert, who until recently served as the president of the American Ambulance Association, an industry trade group. Some companies, he said, lost money early in the pandemic when many people were reluctant to go to the hospital; other companies, faced with a surge in cases, ran out of masks, gloves, medications, syringes, vehicle parts. In late November, the association sent a letter to the U.S. Department of Health and Human Services, pleading for more government aid. "The 911 emergency medical system throughout the United States," it stated, "is at a breaking point."
A few days later, in Los Angeles, it broke.
The more critically sick patients dialed 911, the more intensive care unit beds filled up; soon, those ICU patients were overflowing into the emergency room and EMTs had to wait for hours to offload newer patients until others were discharged or died. With so many crews stuck on the wall and several dozen more in quarantine or sickened by the virus, there were fewer and fewer ambulances on the road to handle all the 911 calls, which led to dangerous delays in emergency response times. With each passing day, the situation deteriorated. Hospitals assembled disaster tents and installed mobile morgues. Eventually, dispatchers were making informal triage decisions about where to send the last available ambulance.
To combat this vicious cycle, EMTs like Diaz and Sanchez were forced to do things they'd never done before. They stayed awake for 48 hours at a stretch, piled on extra shifts to cover for sick colleagues, and brokered final goodbyes between patients and their loved ones. To free up ambulances to run other calls, they attended to groups of patients. Some patients on the wall had been passed between so many crews that their latest handlers scarcely knew what they'd come in for. All that mattered was ensuring that the person kept breathing.
High-flow oxygen, sent through the nose, is effectively the only stabilizing treatment that EMTs can administer to people infected with the coronavirus. COVID-19 patients can require 10 times the amount of oxygen of non-COVID-19 patients, and as demand soared, ambulances and hospitals ran through their supply. At the start of January, the county's emergency medical services agency instructed EMTs and paramedics to withhold oxygen from those whose blood oxygen saturation was above 90%. (Typical blood oxygen levels range between 96% and 100%; levels below 90% can be cause for concern.)
Some of Diaz's patients appeared to be suffocating, but so long as their blood oxygen saturation was above the threshold established by the county's much-needed rationing protocols, he had to deny them. People gasped and heaved and moaned. It made him feel like he was watching someone drown.
The rationing was even more upsetting for the patients themselves. They were shocked — rightfully so, Diaz thought — by what was happening. This is America, they told him. This is California. These expressions of disbelief, Diaz observed, were often followed by anger. One of his patients, desperate to see a nurse, called 911 from inside the hospital. Others called him names. He understood their frustration. He was frustrated, too. How could he convince someone whose lungs were filling with fluid that he actually wanted to help them when he was mostly just standing there?
As the sun set on Antelope Valley Hospital, more EMT crews arrived, joining Sanchez and Diaz on the wall. They exchanged mordant greetings.
"Fancy seeing you here!"
"Where have you been all day?"
"Welcome to zero space."
The line of gurneys had spilled beyond the doors of the ER, into the cooling night air. EMTs wrapped their patients in coarse white blankets. Nurses wheeled equipment out onto the pavement to take vitals. Diaz and his colleagues milled about.
As the union leader, Diaz was highly sought after by his fellow EMTs. He made his rounds with the easygoing self-assurance of a man who delights in fixing peoples' problems. One EMT flagged him down to say that he was worried about disciplinary action following a dispute about attendance. Diaz reassured him that the matter would be dropped. Another EMT said she was working overtime to pay her bills after calling out with COVID-19 at the start of January. Diaz told her he'd file a grievance and find out why she hadn't received sick pay. (AMR's policy is to compensate coronavirus-positive workers until they test negative.)
In the sea of crisp navy uniforms, Diaz spotted his buddy Gage Oldenburg, a 24-year-old EMT with a bristly blond mustache. They chatted about the frenetic pace of work. For most of January, there'd been more than 200 coronavirus deaths a day in Los Angeles, the equivalent of one death every seven minutes. No one — not their supervisors, not the fire department chief, not the doctors in the hospital — had ever seen anything like it. EMTs and paramedics already sufferdisproportionately from post-traumatic stress disorder and suicidal ideation. What the effects of the pandemic will be on these first responders in the months to come remains to be seen. "This took an emotional toll that we will probably be seeing for years," said Cathy Chidester, the director of LA County's EMS Agency, which oversees the ambulance system.
Many EMTs are on duty in 24-hour shifts, but before the pandemic, there were plenty of opportunities at the station to nap, decompress or console one another about harrowing calls. On days off, Diaz, Oldenburg and other AMR friends camped on the beach together, watched Lakers games and grabbed mimosas in the early morning after work. Once the rise in hospitalizations put an end to all downtime, though, these bottlenecks at the hospital had become one of the few occasions where crews could process the unfolding disaster. "It used to be that people enjoyed their jobs, even though there were parts they didn't enjoy," Oldenburg said. "Now a lot of people just show up because they feel like they have no other option."
Diaz did his best each shift to keep morale up. He liked to remind his colleagues that they were "on the front lines of the front line." Yet even he'd found himself becoming inured to scenarios that would have been previously unthinkable. He no longer noticed when every patient in the emergency room was intubated. He was indifferent to the high-pitched ring of the alarms that signaled the end of the hospital's oxygen supply. Of course, some detachment was natural, even necessary, in a profession that routinely deals with the worst day in someone else's life. But it wasn't just that he was desensitized; sometimes he had trouble feeling anything at all.
Shortly after 7 p.m., while Sanchez watched their patient inside, Diaz bolted down a beef bowl from a local fast-food chain using the hood of an ambulance as a table. It was his first meal of the shift. He and Sanchez had been running calls — a cardiac arrest, a dirt bike accident, a COVID-19-positive woman with a blood clot in her leg — since 6 a.m. At one point, they'd had to drive through an hour of traffic to cover a station down in Santa Clarita because too many units there were tied up or out sick.
"This is a good day," Diaz said to Chris Canning, a jovial EMT who wore his hair pulled back into a small bun. Diaz was so accustomed to the chaos of the surge that an unscheduled break during a shift of nonstop calls now seemed like a luxury.
In his happiest moments, Diaz would tell himself, "I'll do 30 years and call it." He loved his job. He was good at it. His life as an EMT was more exciting, more significant and more satisfying than anything he had previously done. Why not keep at it for decades?
Some people enter emergency medicine because they've witnessed a paramedic saving the life of an uncle or mother. Or because a relative died before help arrived and the future medic wishes to prevent the same thing from happening to someone else. Others, teenagers just out of high school, drive ambulances before moving on to higher-paying jobs in medicine. An EMT certification is also a prerequisite for joining LA's highly selective fire department.
Diaz did not want to be a firefighter and he had not lost a family member through a catastrophic event. Rather, he had fallen in love. He was interested in a girl who was interested in another guy. The other guy was an EMT. Diaz didn't see why he couldn't do the same thing his rival did, "but better." At the time, Diaz was studying film at California State University, Northridge and working as a projectionist at a movie theater. Between classes and work, he attended a 12-week EMS course and flunked out. "My mind wasn't in the right place," he realized. "And then I was like, wait, why did I fail that?" At first his pride compelled him to try again, but he was soon transfixed by what he was learning about the human body's extraordinary ability to compensate for its injuries and illnesses. Though he eventually lost the girl, he gained a vocation, and, in 2009, at the age of 20, he joined American Medical Response.
The first year of work was so humbling and surprising that he started to tell people that every 18-year-old should spend a year in the front seat of an ambulance. He imagined a compulsory EMT service, like a military draft. It wasn't just that the world needed more EMTs, in his view. It was that he could think of no other job that put one's own life into such sobering perspective.
To be an EMT is to understand a truism that might otherwise seem abstract: Someone, somewhere is always suffering. Once he tuned in to the frequency of disaster, Diaz found that trivial frustrations no longer bothered him. Life's smaller pleasures became more fulfilling. Other people might have been disheartened by such unrelenting proximity to pain, but the knowledge that things could be worse filled Diaz, a relentless optimist, with a profound sense of calm.
As the years went by, however, Diaz noticed that he was working with fewer and fewer of the people he had started with. His colleagues around the station were always asking each other about their next move. Fire? Nursing? Law enforcement? He dreaded these questions, which implied that their current career was lacking. The low pay, long hours and high turnover rate only reinforced this impression. Even his friends who adored the EMT lifestyle, with its sense of purpose and foxhole camaraderie, usually ended up leaving after two or three years. Did it really have to be this way? Diaz wondered. Why couldn't working as an EMT be a sustainable career in itself?
In the summer of 2017, eight years into his tenure, Diaz ran for president of Local 77 of the International Association of EMTs and Paramedics. Wages were a consistent matter of concern. As one of the most senior employees in the area, Diaz's hourly wage is $17.89, while Sanchez, after four years at AMR, earns $15.88 an hour. No one got into EMS for the money, as the saying around the station went. Then again, the industry appeared lucrative for those higher up the food chain than Diaz: AMR is a subsidiary of the $4 billion Global Medical Response, which in turn is controlled by KKR, a $252 billion private equity behemoth. (AMR's Wagner emphasized that hourly rates are established through the collective bargaining agreement. "We are constantly looking at ways to be able to adjust compensation," he said, "because we're only successful if we have people that want do the job and be aboard our team.")
Diaz threw himself into the union cause. If burnout was built into the job, he wanted at the very least "to go down swinging." His response to the pandemic was to push himself even harder. He filled his days off with overtime shifts, filing grievances on behalf of members and recording livestreams on Facebook to address safety concerns. His phone rang throughout the night with colleagues seeking advice. He always picked up.
Everything was urgent. He was needed constantly. He could not stop to rest, to sleep, to eat. His girlfriend called him Zombie Michael. But he insisted he was fine. He was fine. Really.
Until he wasn't. One night in the middle of December, Diaz was walking down the hallway at Palmdale Regional Medical Center, when he noticed that oxygen tubes had been recently taped along the ceiling. The hospital had exhausted its portable tanks, and the new lines were rushing oxygen from exam rooms to the row of rasping patients on the wall.
It was strange, but as he stared at the taped tubes, the image of scarcity elated him. At that moment, he felt that the only hope for transformative change to the healthcare system would be if the absolute worst finally came to pass. He imagined what would happen if 30 more people with COVID-19 flooded through the door. If they quit rationing and just ran through the entire oxygen supply. If hundreds of people died that night.
Diaz began to clap, as though he were cheering on a basketball team. "Let's go," he said, raising his voice. "Let's do it! Let's break the system!" He was strolling down the hall now. "Let's bring more patients in," he said, clapping his hands more forcefully. "Let's put everyone on two more liters. Let's just break it."
His euphoria lasted for just a few seconds. People stared at him quizzically and then moved on. They were used to far greater disturbances than a round of applause.
"It's terrible to think about that," he later said. "It's like I was wishing the worst on people in that moment. But it was more in the realm of wanting things to get better. I hoped this would be the tipping point, because I don't ever want humanity to go through something like this ever again."
The fact that this crumbling system had endured, in spite of all its failures, seemed to him the cruelest fate. "I was telling everyone, 'If we hobble out of this, I quit,'" he said. "And now, we're just hobbling out of this, which is infuriating."
No sooner had Diaz shut the metal door to Station 104 than he heard the familiar ring of a call dropping in over the radio — a two-toned descent, like a drawn-out doorbell. "Ugh," he sighed. "That sucks." He and Sanchez had just returned to the station after finally offloading their 88-year-old patient into a bed at Antelope Valley Hospital. It had taken over two hours, and the jolt of excitement he'd felt earlier that afternoon had long since dissipated.
"Man, this was our first time back in 14 hours," he said.
Diaz had recently switched to this station in Littlerock, a more rural part of the valley known for its fruit orchards and treacherous highway. He'd been working with a different partner at a busier AMR station in Palmdale when he realized he'd had as much as he could take. Clapping in the hallways at the hospital was one sign. Feeling like every problem was the patient's fault was another. He'd also begun to ask himself what he called "Maslow's hierarchy of needs type of questions." Questions, he said, like, "Will I have enough sleep to not negatively affect my home life? Can I eat? Can I use a restroom?" Though the Palmdale station was a five-minute drive from his house, his agitation signaled to him that it was time to relocate to what he'd hoped would be a less relentless outpost. So far, though, his new base had been just as hectic as the old one. The recycling bin overflowed with emptied energy drinks.
Sanchez, who had just slumped into one of the station's La-Z-Boys, rezipped her heavy black boots and trudged over to the receiver. "Can you repeat the precaution?" she asked the dispatcher.
Diaz wriggled into the jacket of his uniform and unfastened the Motorola beeper on his hip. "Possibly COVID?" he read from the green band of screen. "Another COVID-positive. Chest pain, 50-year-old man, elevated heart rate with difficulty breathing."
When Diaz and Sanchez arrived at the address at 8:10 p.m., the road was completely dark, except for the flashing lights on the fire trucks that had showed up moments before them. (Los Angeles County sends both the fire department and an AMR crew to each call.) The patient lived in a converted garage in one of the Valley's less developed neighborhoods, where the low-slung houses were surrounded by desolate stretches of high desert scrub. It was a crowded home, the kind that Diaz had noticed Latino immigrants often shared with several relatives, making social distancing impossible.
A few minutes later, Diaz and Sanchez slid a coughing man into the back of their ambulance as five family members huddled to wave goodbye. Diaz pressed his boot against the gas pedal and told the dispatcher that they were heading to Palmdale Regional.
What he didn't say was that he was hurtling toward an overcrowded emergency room with someone who, in his opinion, didn't need to go there. It's not that his patient wasn't sick: The coronavirus had left the man short of breath and, as Diaz drove, he could hear a succession of quick, dry coughs from a few feet behind him. Still, he didn't think the hospital would be able to do much. The patient was far from needing a ventilator, and with his blood oxygen saturation around 95%, he wasn't eligible for a nasal cannula under the current rationing orders. It was evident to Diaz that what this man needed was to stay put and rest. But by the time Diaz and Sanchez had entered the patient's home, the fire department paramedics were finishing up the paperwork to prepare him for transport.
The situation was exasperating. At the scene, the daughter had explained that her father had already gone to the hospital three times in the previous two days and they kept sending him home. Was it really a good idea to bring him back? Whenever possible, Diaz tried to warn patients that unless they were at imminent risk of death — and if he had time to issue this warning, they likely were not — the hospital might not treat them for hours, even days. Still, it wasn't up to him. EMTs typically handle transport, but the fire department holds the primary medical authority at each call. Again and again, Diaz had seen them abide by a "you call, we haul" mindset. (Dr. Clayton Kazan, the medical director for the LA County Fire Department, said he understands why EMTs and paramedics "are frustrated that they sometimes have to transport people who seem like they really don't need to go to the hospital." But the decision ultimately rests with patients, he noted, and "some of the people who EMTs think don't have to go to hospital really do end up needing to be there.")
The knobbly silhouettes of Joshua trees, lit up by the ambulance's headlights, scrolled by outside the windows. When they approached Palmdale, the arid landscape gave way to a warren of sand-colored strip malls. On rides like this, Diaz wondered, was he helping people feel better or just helping an inefficient system capitalize on people's fears? The majority of people who call 911 do so for non-life-threatening reasons. Nevertheless, EMTs and paramedics have two options at each scene: leave the patient where they are or take them to the ER — and companies can only charge patients when they do the latter. A recent study of the 911 system by the medical directors of the LAFD noted that this business model "creates a perverse incentive in low-acuity cases (and pandemics) to take all patients to a high-cost, inefficient site" — the hospital — "where one might have to wait hours to be seen and possibly even be exposed to others who are sicker."
What happened at the hospital was just what Diaz had expected, just as he had experienced it many times before. Because the patient did not meet the county's new criteria for active monitoring on the wall, Diaz plopped him into a wheelchair and rolled him into the COVID-19-positive section of the waiting room. A scrum of people in pajamas sat on the other side of a plastic curtain. It was the same outcome as if a family member had driven him there. Except for the cost.
Diaz had nine more hours to go, and he could already feel the stirrings of burnout returning: the irritation, the exhaustion, the apathy. But "burnout" didn't capture the extent of his distress. It was as if, Diaz said, he was shrouded by a fog. Or maybe it was the other way around, and the fog had lifted, revealing things as they really were. It reminded him of being at a crowded concert and trying to push past a tangle of bodies toward the exit, only to realize that there was no exit. There wasn't even a door.
A few days later, in early February, Diaz and Sanchez were lying in their sleeping bags in the station's makeshift bedroom area, where five mattresses were pushed up along the walls. Cases had started to decline, and that evening, there'd been a lull in calls. It was one of the first moments they'd had to talk about what had happened to them during the surge.
"I feel like where it really hit me — like, we're not going to get through this for a long time, no matter how much of an effort we put in — was that night in December when I had just come back from having COVID," Sanchez said. "Were you there that night?"
Diaz said he wasn't sure. That might have been a shift he'd swapped to get Christmas off.
"I was still partnered with Kirsten," Sanchez said. "I remember it was one of the first few shifts after I had come back because I was still needing an inhaler nonstop."
That night, she continued, most of the crews had gotten stuck on the wall at Antelope Valley Hospital. There were six or seven COVID-19 patients waiting outside and they all needed high-flow oxygen. Some of them had the lowest blood oxygen saturations she'd ever seen. On 15 liters of high-flow oxygen, her patient's saturation was only around 84% or 85%. They'd been tearing through the portable tanks every half hour or so, far more quickly than they could be replaced. At one point, she and a few other EMTs opened the metal doors of the storage unit outside the ambulance entrance to the ER and saw that only four tanks of oxygen remained. The charge nurse had already told them that whatever was in there was all that was left, but they knew there were still six patients — or maybe it was seven by now — who each needed a tank to keep breathing. She locked eyes with a colleague, snatched a container for her patient, and hurried away. (A hospital spokesperson said the facility did not run out of oxygen; Wagner acknowledged running low but said AMR is "unaware of any ambulance running out of oxygen.")
"We were literally watching patients on the verge of coding" — dying — "because there was nothing we could do," Sanchez said. Although she often thought about this night, she never knew how many of the patients survived. Like many EMTs, she hated to ask the nurses afterward. It was a self-protective measure: out of sight, out of mind.
By the time she picked up another patient, an elderly man, later that night, she'd gone and grabbed one last portable tank of oxygen from the ambulance station. The man's saturation was around 70%, and she could hear the rales in his breathing. It was a bubbling noise, like the sound of air blown through a straw in a glass of water. After the tank ran out, she tried to console him: "I'm sorry there's nothing I can do. You just have to wait a little longer." But he couldn't understand her. For three hours, he kept repeating the only word he knew in English: "Please."
"That was the point where I'm literally in the hallway just looking around," Sanchez went on. "And everywhere you looked it was a disaster. You have the line of patients out the door, still being checked in. And then you hear the frickin' alarms going off because the hospital is out of oxygen. And the nurses running around. I mean, they're always running around, but you could tell they're on a whole other level of overwhelmed."
"Yeah," Diaz nodded.
"It's crazy because you look at your patient and any other day this patient would be a priority, you know? But it's just that everyone else is in the same scenario. You couldn't even say, 'Oh shit, I'm going to panic.' You just kind of—"
"—shut it out," Diaz interjected. "It was weird."
"Yeah, you're just watching it happen," Sanchez said, her voice quiet.
"It's almost existential," he said. "Like a disconnected, third-person experience."
Diaz shifted in his sleeping bag. "I remember there was this weird day in like mid-December where I went on this hysterical spree," he said, recalling the evening at Palmdale hospital when he'd briefly hoped for the worst. "I started thinking this was all funny, and that the whole system just needed to collapse. I'm almost mad that it's started tapering off. How can we go to this edge and it doesn't collapse? People are going to forget about it in a year, and we're going to be right back to the same place where our system still sucks."
Sanchez tried not to think about the future. Until now, she hadn't had the time to focus on anything other than the immediate needs of patients.
"Usually after you have a bad call, like one with a kid, you can cry if you need to and process those feelings," she said. "But I feel like I never addressed that part of it with these types of calls. I'm sure it's building up."
"It'll probably result in some PTSD later or something," Diaz said, laughing.
Sanchez smiled sardonically. "Yeah, but that's not today's issue."
"That's how it is, and that's very EMS, that way of thinking about things," he said. "Like, 'Don't worry about something until you have to worry about it.' It's almost in our training: 'Don't get too ahead of yourself, because doing that will not allow you to be in the moment to help other people.' So it's, like, ingrained in us to—"
As Diaz spoke, the pager on his hip began to vibrate. Then the loudspeaker chimed.
Another call.
They sat up, pulled on their boots, and walked back to their ambulance.
About this story: Ava Kofman spent three weeks reporting in person with EMTs in Los Angeles for this article. She either witnessed the scenes described here or gathered the details, including participants' thoughts at the time, from interviews with those participants.
It's been nearly two years since Rhode Island lawmakers approved funding to train all 911 call takers to provide CPR instructions over the phone, but new data shows no improvement in people's chances of receiving CPR in the critical minutes prior to the arrival of first responders.
Only about one in five people who went into cardiac arrest in their homes or someplace other than a hospital or healthcare setting in Rhode Island last year received CPR before police, fire or emergency medical providers showed up, according to data provided to The Public's Radio by the state Department of Health. The state's bystander CPR rate has remained between 19% and 21% since 2018.
"The needle hasn't really moved," said Jason Rhodes, the health department's chief of emergency medical services.
For people who go into cardiac arrest, getting CPR during the first few minutes can mean the difference between life and death. Every minute of delay in performing CPR on people in cardiac arrest decreases their chances of survival by as much as 10%, according to the American Heart Association.
Rhode Island's bystander CPR rate is less than half the national average, according to the nonprofit Cardiac Arrest Registry to Enhance Survival, which collects data on regions that encompass about 40% of the nation's population. (Rhode Island does not participate in CARES but models its data collection on it.) Rhode Island's survival rate for out-of-hospital cardiac arrests also remains well below the national average.
Rhode Island's 911 system was the subject of a 2019 investigation by The Public's Radio and ProPublica that raised questions about whether the lack of training for the state's 911 call takers was costing lives. Among the findings: a 6-month-old baby in Warwick died in 2018 after a 911 call taker gave incorrect CPR instructions to the family.
But Rhode Island's lack of progress is not for lack of trying. The state had to replace its aging computer-aided dispatch system before the 911 center could install the software that would guide its call takers to deliver the appropriate medical instructions.
"I'm becoming a little bit despondent at this point," said Dr. Joseph Lauro, an emergency room physician and member of the Rhode Island chapter of the American College of Emergency Physicians, which helped lead the push to improve training. "All those efforts and nothing has happened."
In June 2019, Rhode Island lawmakers earmarked $220,000 in the state's budget for the 2020 fiscal year, for training and software that would enable 911 call takers to deliver CPR instructions and other medical assistance by phone.
It was expected to be up and running more than a year ago. But Rhode Island's EMD training began just last month.
Emergency medical calls in every other New England state are handled by people certified in emergency medical dispatch, or EMD.
"We're frustrated, too," about the delays, said J. David Smith, director of the 911 center. But he said the extra time was needed to buy and install a new $1.2 million computer-aided dispatch system so the new software can operate properly. "So that when we finally do this," he said, "it's going to be the best it can be."
The training includes following carefully scripted instructions to talk a caller or bystander through performing CPR. The system is used in Washington state's King County, home to Seattle, a national model for prehospital cardiac care. More than 75% of people in King County who experienced out-of-hospital cardiac arrests in 2020 received bystander CPR.
The new software program also will enable the Rhode Island State Police, which oversees the 911 center, to collect data and track its performance in handling 911 calls. Priority Dispatch, a company based in Salt Lake City, Utah, is providing the software and training under a state contract signed in August 2019 for about $150,000, Smith said.
The center is currently completing training for all 911 call takers and supervisors on the new computer-aided dispatch system, Smith said, and vetting the EMD protocols with state health officials. He said the new system is expected to launch in June. Legislation has been introduced in the General Assembly to mandate that all 911 call takers be certified in EMD, which includes being trained to provide CPR instructions over the phone. A bill (H 5629) introduced by Rep. Mia Ackerman, D-Cumberland, the House deputy majority whip, would require that at least one 911 call taker trained in what's known as telephone CPR be on duty at all times. A companion Senate bill (S 0385) has been introduced by Sen. Maryellen Goodwin, D-Providence.
At a March 30 committee hearing on the House bill, Lauro, the emergency medicine physician, said that as medical director for several EMS departments he reviews cases of cardiac arrest patients treated by emergency medical personnel. "One of the most common things that I find in out-of-hospital cardiac arrest is lack of bystander CPR," he said.
Dr. Catherine Cummings, president of the Rhode Island Medical Society, said most Rhode Islanders assume that 911 callers routinely receive CPR instructions over the phone, and "are surprised to find out that it doesn't" happen.
Ackerman said the legislation would ensure that 911 call takers continue to receive the training required for them to maintain their EMD certifications. "The law is the only way to assure that it will happen," she said. "It's that simple."
A similar bill she introduced in March 2019 did not make it out of committee.
New Mexico limits the information it collects on neonatal centers. That makes it incredibly challenging to get reliable data, sort out what's wrong and figure out how to fix it.
This article was published on Monday, April 5, 2021 in ProPublica.
It’s not unusual for health care reporters to get out-of-the-blue calls or emails from people in the industry. But when three clinicians from Albuquerque hospitals reached out to me to share concerns about the state’s largest for-profit maternity hospital, Lovelace Women’s, I took note.
Two of the tipsters worked at Lovelace. None knew the others had contacted me, but all three had concerns about how Lovelace cared for its most premature babies.
These delicate preemies are frequently born weighing less than 2 pounds. Their immature lungs are not ready for life outside the womb. Their intestines cannot handle normal feedings and are prone to inflammation, tears and life-threatening infections.
In recent years, most preemies transferred to the University of New Mexico Hospital for emergency intestinal surgery had come from Lovelace, one tipster said. (UNM is home to the state’s only level 4 regional referral NICU.) These babies had advanced cases of necrotizing enterocolitis, or NEC, that clinician said. An inflammatory disorder of the intestines, NEC is a leading cause of death among the smallest newborns.
Throughout 2020, I interviewed dozens of people: Albuquerque NICU clinicians, newborn transport team paramedics and nurses, hospital officials, state Health Department and Medicaid program staff, and nationally recognized NICU experts. I contacted other current and former Lovelace clinicians, some of whom echoed the tipsters’ concerns. I sought New Mexico Health Department hospital inspection reports and regulators’ emails about neonatal hospital care.
But to evaluate the clinicians’ concerns, I also needed data. Hospital data can be used to assess trends and details that no one health care worker is likely to detect. Data can help a reporter determine if a patient’s experience is typical or an aberration.
In this case, hospital transfers would show whether a disproportionate number of NEC transfers to UNM really came from Lovelace. Diagnostic data would, I hoped, reveal how common those infections were at Lovelace. And if I could get data on death rates, I could compare it to the numbers for a similar hospital in the area.
My problem: Getting reliable data about individual hospitals’ patients and outcomes in New Mexico is incredibly challenging.
First, I obtained data on hospital transfers: the UNM neonatal medical transport team’s logs and the state Health Department’s emergency medical services tracking system database. UNM and the Health Department are each supposed to document hospital patient transfers, like babies sent from Lovelace to UNM for surgery. I hoped these would provide a window into how frequently Lovelace and Presbyterian Hospital, Albuquerque’s only level 3 NICU hospitals, had medical emergencies demanding a higher level of care. (Level 3 NICUs are supposed to be able to provide sustained, expert care for even the smallest preemies and medically complex babies.)
But the state’s EMS database turned out to be incomplete. For years, air and ground ambulance services simply hadn’t filed reports and the state hadn’t forced the issue. And the UNM neonatal transport team’s service logs only went back a couple of years.
I requested a copy of the intake log from UNM’s NICU, which was available because UNM is a public institution subject to the state’s public records act. The log is reported to the Vermont Oxford Network, an international NICU research collaborative to which UNM, Lovelace and Presbyterian all belong. The network would not share member hospitals’ newborn outcomes. But having UNM’s intake logs meant I could look for patterns in emergency newborn transfers from Lovelace and Presbyterian.
I also requested autopsy records, hoping to identify patterns in newborn deaths at Lovelace and Presbyterian. But I learned that few autopsies are done for newborns at either hospital. Autopsies cost thousands of dollars, and grieving parents, rather than hospitals, pay for them.
For several months in the spring and summer, I was occupied with COVID-19 reporting. But by August and September I was looking into Health Department databases that contain information about births and each patient’s diagnosis, treatment and outcome at all of the state’s hospitals except for those operated by the federal government.
Reporters in some states can obtain patient-level hospital records that have been stripped of patient-identifying details but that name individual hospitals. Such records link each patient with details like sex, year of care, diagnoses, treatments, the hospital where they were treated, and whether the patient was discharged home, transferred to another hospital or died. That kind of data allows for complex statistical analyses of hospitals’ patient populations and outcomes, and it could help determine if one hospital’s patient population was higher risk than another’s, which could lead to worse outcomes even if both hospitals delivered the same level of care.
But due to New Mexico laws like the Health Information System Act, the state publicly releases only aggregate data to protect patient privacy — counts, basically, of patients whose hospital records contained mention of a particular diagnosis or medical procedure. Patient-level data is exempt from disclosure under the state’s public records law. That limited my ability to do the sophisticated analyses that patient-level data sets allow. (Patient-level data can be purchased for thousands of dollars from the federal government, but data for recent years is not included.) And because of a change in diagnostic and billing codes in 2015, data from that year is difficult to interpret and to compare to data from other years.
When I submitted my initial data request, Health Department officials said the state had a longstanding practice of not disclosing individual hospitals’ data.
But when I read the state law, I could find no specific prohibition against disclosing hospital names; the state has discretion over when to release aggregate data for research purposes. So I asked state health officials about their practice of not disclosing data for named hospitals, emphasizing that I wanted the data to report on a pressing matter of public interest. I promised I wouldn’t use it to try to identify individual patients.
To my surprise, the Health Department reviewed and reversed its practice. It provided detailed aggregate data from two databases — a hospital patient database and a birth- and death-certificate database — for Albuquerque’s NICU hospitals. In a Zoom meeting, epidemiologists patiently fielded my questions.
The Health Department data was very useful but far from perfect. Because the state doesn’t monitor neonatal admissions or outcomes, hospitals’ NICU and newborn data is not audited for quality. The hospital patient database has gaps that complicated any analysis of extremely preterm babies’ outcomes. For example, it includes newborns’ birth weights, but not how premature they were at birth. And hospital patient data on babies’ NICU admissions isn’t linked to other details about babies’ health or medical procedures. Hospital-wide counts of babies with particular diseases were provided, but hospitals don’t always report them properly. For example, UNM’s intake log showed Lovelace transferring even more babies to UNM for NEC surgery than it had reported diagnosing with NEC in the first place. That meant I couldn’t rely on the data Lovelace had reported to the patient database.
Lovelace and Presbyterian officials initially said they would share their newborn NEC and transfer statistics but did not do so. Lovelace did not respond to many of my questions but defended its track record of neonatal intensive care. Lovelace Vice President for Marketing Serena Pettes claimed that for all NICU-admitted newborns — including both lower-risk full-term babies and premature babies — Lovelace’s neonatal death rate is “significantly lower than the national average” and has declined over time. “As a whole, our mortality rate is less than half of the national NICU average.”
Birth and death certificate submissions to the Health Department’s vital records bureau are supposed to include details of maternal medical history, labor and delivery, and medical care for the newborn, including whether they were admitted to the NICU. But reviewing data for extremely preterm babies, New Mexico In Depth and ProPublica found evidence that data is also incomplete for key variables, like congenital birth defects and NICU admissions. This meant I could not determine if the number of babies with major birth defects at each hospital, for example, might explain their different death rates.
But the Health Department’s vital statistics data — the information reported to the state by the hospitals for each live birth and newborn death — did allow me to calculate Lovelace’s and Presbyterian’s hospital-wide death rates for extremely preterm and extremely low birth-weight newborns. As the clinicians had suspected, Lovelace’s death rates for these babies were markedly higher than Presbyterian’s. (There was no such disparity in the death rates of babies born at later gestational ages or higher birth weights.) And UNM’s intake records confirmed that more Lovelace babies were transferred to UNM with NEC, including extremely preterm babies.
On March 12, weeks before New Mexico In Depth and ProPublica published stories describing the analysis, Lovelace distributed a memo to employees giving talking points about my reporting. It described the findings as “using statistics to create a narrative that is not supported by accurate data.” They’d said the exact same thing to me earlier in the month. I’d asked the Lovelace spokesperson then if that meant the hospital had submitted inaccurate information to the state. She did not reply.
While the data bolstered the tipsters’ concerns, the reasons why Lovelace’s extremely preterm babies die and are transferred to UNM at a higher rate than Presbyterian’s babies remains elusive.
Such disparities can reflect differences in clinical practices or in how sick patients are, or both. Without more complete patient-level data — or an independent, on-site review of the hospital’s patient records — understanding the causes of the disparity is impossible, experts said.
This points to another key finding from my investigation: New Mexico does not have the regulatory tools to sort out what’s wrong or how to fix it.
Vaccinations for the coronavirus are supposed to be free and available to all Americans regardless of insurance or immigration status. For some, that isn’t how it has been playing out. Here are common false barriers to look out for.
This article was published on Thursday, April 1, 2021 in ProPublica.
As the United States seeks to end its coronavirus crisis and outrun variants, public health officials recognize it is essential for as many people as possible to get vaccinated. Making that easy is a major part of the plan. According to the Coronavirus Aid, Relief, and Economic Security Act, the vaccine is supposed to be free to everyone, whether they’re insured or not. And the Biden administration has directed all vaccination sites to accept undocumented immigrants as a “moral and public health imperative.” But this promise has not always been fulfilled, ProPublica has found.
At vaccination sites around the country, people have been turned away after being asked for documentation that they shouldn’t need to provide, or asked to pay when they owed nothing.
In part, this has happened as businesses administering the vaccine try to recoup administrative fees they are allowed to charge to the government and private insurers. To aid them in passing along the bill, major pharmacies ask those being vaccinated for their Social Security numbers and insurance information. They aren’t supposed to deny a shot to people who aren’t covered or try to make them pay the fees. But both of those things have happened.
Workers at vaccine sites have also turned away people who they felt didn’t provide sufficient proof that they belonged to an eligible group, demanding to see medical records or other evidence of underlying conditions. While the vast majority of states don’t require such documentation, government officials haven’t always communicated that clearly.
The resulting barriers can be higher for those less equipped to advocate for themselves, such as undocumented people and those who do not speak English. Because of this, even as vaccines have become more widely available, they are still not easy for some of the most vulnerable people to access.
This is part two ofa series documenting barriers to access to COVID-19 vaccines. If you or your family members are experiencing difficulty getting a COVID-19 vaccine, or if you design vaccination plans and can share solutions or challenges related to fair distribution, please fill outour questionnaire. If you prefer to call or text, you can get in touch at 202-681-0779 in English or Spanish.
You Do Not Need a Social Security Number or Insurance to Get a Free COVID Vaccine. Your Immigration Status Does Not Matter, Either.
Camille lives in Baltimore with her 77-year-old mother. (She asked to be identified only by her first name for privacy reasons.) When a nonprofit organization helped her mother get a vaccination appointment an hour away in College Park, Maryland, Camille took time off from work to drive her there. They’d only brought along her mother’s state ID card. But when they went up to the counter at the CVS pharmacy, an employee asked for insurance information and a Social Security number. Camille’s mother, who is from Togo and is seeking asylum in the United States, doesn’t have either of those. Camille said the employee told her they’d have to pay if they wanted a vaccine.
No one is supposed to be charged for the COVID-19 vaccine, according to the CARES Act, and immigration status shouldn’t affect eligibility. Many vaccination sites ask for insurance and Social Security information so they can charge administrative fees to insurance companies or the federal government, but those aren’t requirements for being able to get vaccinated.
Camille told the CVS employee she wasn’t going to pay for a vaccine. Her mother, a French speaker who takes weekly English lessons, needed Camille to translate what was happening. “I felt so embarrassed, and my mom also when I was explaining to her,” she said. “She was like, ‘I’m not going to have it because of insurance?’”
Not wanting to drive an hour back without the vaccine, Camille called Tiffany Nelms, executive director of the Baltimore-based nonprofit Asylee Women Enterprise, which had set up the appointment for them. When Nelms asked the CVS employee why they were having trouble getting a vaccine without a Social Security number, the employee “quickly backpedaled,” Nelms said. The staffer told Nelms a supervisor would override the CVS computer system’s request for an insurance or Social Security number.
Nelms said she’s worried about others who have less access to support. “Not everyone has a bilingual relative to go with them who is even comfortable advocating in that way and also has an advocate that’s a phone call away,” Nelms said. “A lot of our clients, especially those who don’t have legal status yet, if they were asked a question like that, they would just leave.”
Camille said she’s thankful her mother got the one-dose Johnson & Johnson vaccine so they don’t have to go back to the CVS for a second shot.
“We are aware of these isolated incidents in Maryland and are committed to addressing inequities related to COVID-19 vaccine access in vulnerable communities, with a particular focus on Black and Hispanic populations,” a spokesperson for CVS said in a written statement regarding Camille’s experience and two other incidents that took place at Maryland CVS locations. “No patient, whether they are insured or uninsured, has been charged directly for a COVID-19 vaccine. If a patient does not have insurance, we are required by the Health Resources and Services Administration to ask the patient to provide either a Social Security number or valid driver’s license/state ID #. However, uninsured patients are not required to provide this information in order to receive a vaccine from us.”
Vaccination sites’ arbitrary documentation requirements have been a barrier for other Marylanders trying to get vaccinated as well. Several Montgomery County public school teachers formed Vaccine Hunters-Las Caza Vacunas to help find appointments for eligible Marylanders. In March, eight of their clients were initially denied vaccines when they showed up for appointments. Most were told they needed documentation that isn’t required by the state. All of them were immigrants, and most eventually got the vaccine after contacting someone from the group to advocate on their behalf.
In one incident Vaccine Hunters volunteers said they intervened in, a woman arrived for her appointment at a CVS in White Plains, Maryland, and presented her ID, a Salvadoran passport. She was told she would need an insurance card or Social Security number, which she does not have. In another, a woman who primarily speaks Spanish was initially turned away by a College Park CVS because she couldn’t respond when asked, in English, to identify her eligibility category.
The group’s volunteers have received complaints from local residents who were turned away for other reasons as well. At a Giant grocery store in Hyattsville, two Latina pastors were initially turned away because they did not have a letter from their employer, even though they brought W-2 forms proving their employment status.
“A COVID-19 vaccine provider may not refuse an individual a vaccine based on their citizenship or immigration status,” said Charles Gischlar, deputy director of communications for the Maryland Department of Health. However, Gischlar said, Maryland vaccine providers are required to take “reasonable steps” to determine whether someone is actually in a priority group: “A COVID-19 vaccine provider may require additional documentation or employee identification and may require that organizations submit institutional plans with identified individuals.”
A spokesperson for Giant Food said that its stores check patient information from their IDs or letters from their employers to identify who is being vaccinated and report demographics back to the Centers for Disease Control and Prevention. “Our goal is to assist in getting people immunized, not to police the vaccine by any means,” communications and community relations manager Daniel Wolk said. “As you can imagine, guidance from the state legislators and the Department of Health changes daily. We do our best to effectively communicate these changes to our over 400 pharmacists via email and weekly calls.”
Across the country in the Mission Hills neighborhood of Los Angeles, Rite Aid turned away a woman on March 14 after asking her to provide a Social Security number and a U.S.-issued ID, which she does not have. She had brought her consular ID, which Los Angeles County sites are supposed to accept for vaccination appointments.
“After being on a waitlist for a week, my mom was turned away because she has no social security and because she is UNDOCUMENTED,” her son Sebastian Araujo wrote on Instagram, adding on Twitter, “My mom was literally sobbing and I’m literally appalled.” After Araujo shared the incident on social media, Rite Aid responded to him on Twitter with an apology and reached out to reschedule a time to vaccinate his mother.
A Rite Aid spokesperson said the company advises its employees not to turn anyone away from a vaccine appointment, regardless of whether they have an ID, Social Security number or insurance. “This was an isolated incident, was a mistake and did not have anything to do with immigration status,” said Rite Aid public relations director Chris Savarese. “The store staff and regional teams have been retrained on our policy to not turn anyone away.”
A week after the Los Angeles incident, a Rite Aid in Orange County, California denied the vaccine to another woman who did not have a Social Security card or insurance, though she had brought her out-of-state ID and a letter from her employer.
At first, Araujo said, he was hesitant to post publicly about his mother’s experience because of the hateful comments he anticipated facing online. “But I think raising awareness is very, very important,” Araujo said in an interview with ProPublica. “If we would’ve just stayed quiet, honestly, nothing would have happened. Rite Aid probably would have continued rejecting people and LA County would’ve never brought this issue into a conversation.”
After Araujo and local media outlets publicized the incident, Los Angeles County officials spoke out and posted on social media to emphasize that proof of citizenship is not required to get a vaccine.
A COVID Vaccine Should Never Cost You Money — Ever. It’s the Law.
While the CDC has made it clear that vaccine providers should not charge patients anything, including administrative fees or copays, some patients have still received bills for the COVID-19 vaccine.
The day after Rosanne Dombek, 85, received her second shot at InterMed, a primary care practice in Maine, she opened her mail and found a bill. For “Covid-19 Pfizer Admin, 1st dose,” her charge was $71.01. “If your outstanding balance becomes 120 days past due, the balance will be transferred to the Thomas Agency for further collection action,” the bottom of the bill said. “It sounded rather final,” said Dombek, who is the mother of Lynn Dombek, ProPublica’s research editor. She immediately wrote out a check. “I was surprised to get the bill, but I’m old enough now that I don’t want any more battles.”
When asked about Dombek’s bill, InterMed spokesperson John Lamb first said that the $71 should have been billed to the patient’s insurance company, and that “the correspondence you referenced is likely a request for insurance information.” When shown a copy of Dombek’s bill, which did not include any such request, Lamb responded, “The statement should have included a notice to call us with her insurance information. We’re looking into why that was missing.” Yet InterMed’s website seemed to indicate that the bill was intentional. In its coronavirus FAQ section, the site said:
“The COVID vaccine will be provided to patients at no cost. However, there will be a vaccine administration fee charged to the patient.” When ProPublica questioned InterMed about this language, Lamb responded, “Good catch. It was confusing. We’ve corrected it to reflect the billing to the insurance provider.” The website was subsequently updated. Dombek did not end up mailing her check to InterMed. Some residents in New Mexico have also reported receiving bills after getting vaccinated. It’s unclear how the CDC or its parent agency, the Department of Health and Human Services, aims to prevent patients from being billed. A CDC spokesperson noted that individuals can call an HHS hotline to report any billing-related violations, but referred oversight questions to HHS. HHS didn’t respond to requests for comment.
Fear of potential bills has kept others from getting vaccinated to begin with. Nancy Largo of Bellport, New York, doesn’t have insurance, already carries about $7,000 in medical debt and has been out of work for almost two years because of a workplace injury. She knows the vaccine is supposed to be free, but she’s still worried. “What happens if they charge me?” Largo asked in Spanish.
Largo doesn’t speak English, and medical providers don’t always have Spanish-speaking staff, so she’s not confident that she'll be able to ask questions about billing and other details once she gets to a vaccination site.
Though nearby pharmacies are offering the vaccine, Largo is limiting herself to finding a shot through one clinic that she knows treats people without insurance and has Spanish-speaking staff. So far, they haven’t had an appointment for her.
In Nearly Every State, Providers Are Required to Believe What You Say About Underlying Conditions.
Sara Waldecker was worried about how she could prove that she was a high-risk patient eligible for a COVID-19 shot. Michigan had just opened up vaccinations to anyone ages 16 and up with disabilities or medical conditions that qualified. Waldecker, 37, said that a childhood illness left her with lung scarring and asthma, but she wasn’t sure how to get hold of those medical records because “the primary doctor I saw, up to five years ago, has died.” After that, Waldecker switched hospital systems, and her old records didn’t transfer with her. Then Waldecker’s husband lost his job during the pandemic, leaving them without health insurance. She said she couldn’t afford to see a doctor and have tests run to get diagnosed again. She’d spent the entirety of the pandemic isolated, buffeted by conflicted emotions. “If I catch it, there’s an overwhelming chance I’m not going to make it, but I also feel guilt from keeping my kid from her favorite places,” she said. “She’s healthy, the rest of my family is healthy — I’m the weak link. I’m the one keeping them in isolation.” In fact, Waldecker didn’t need to prove anything. In Michigan, “individuals attest to any medical conditions upon registration,” according to Lynn Sutfin, public information officer for the state’s
Department of Health and Human Services. “They do not need to provide proof.” That information is not evident on the state health department’s website, nor is it clear on the website of the health department for Macomb County, where Waldecker lives.
ProPublica surveyed all 50 states and found that, among those currently providing vaccines to individuals with underlying health conditions, almost all only require a patient to self-attest that they meet the criteria, and do not require any documentation or proof. Florida is one exception. It limits eligibility to “persons determined to be extremely vulnerable by a physician” and provides a form for doctors to fill out.
In Delaware, health providers and hospital systems are the only places where patients with health conditions can get a vaccine. “Delaware health providers, including hospitals, have been advised to use their clinical judgement to vaccinate individuals 16-64 with underlying health conditions, as they will have access to the patient’s medical information,” state public health department spokesperson Robin Bryson wrote in an email. Even in states that only require an attestation of someone’s underlying condition, that information was hard to find on state websites. Many did not mention it at all, and ProPublica was only able to learn about it by contacting press offices.
Whatever a state says, however, specific vaccination sites may sometimes ignore official guidelines. When Ric Galvan, 20, went to the Alamodome stadium in San Antonio, Texas, for his shot on March 2, he recalled, he was questioned by a firefighter who was helping with intake: “He first sort of condescendingly asked, ‘How old are you, buddy?’ — likely because I’m young.” Galvan provided his ID and stated that he had chronic asthma. “He then asked if I had an inhaler or some sort of proof of having asthma, to which I said, ‘No, not with me.’ He then told me that the vaccine is only for ‘real asthmatics’ who ‘need their inhaler with them at all times.’”“As someone who has been under pulmonologist care since I was 4 years old, this really upset me,” Galvan said. He tried to push back, telling the firefighter that none of the confirmation emails said anything about medical proof, but the firefighter told him to leave the site. A full-time student who also works part time, Galvan added that he was frustrated because it had been so hard to get an appointment in the first place, and now he had to start over again.
“We must ensure individuals that have registered do in fact meet the criteria set by the state of 1A and 1B. This process entails verification of name, age, and if under 65, qualified pre-existing conditions,” replied Michelle Vigil, a spokesperson for the city of San Antonio. “Unfortunately we have seen instances where these conditions cannot be verified. In order to ensure that we are in compliance we have had to turn a very small number of people away.”
But Texas sites aren’t supposed to ask for proof of underlying medical conditions, according to Douglas Loveday, spokesperson for Texas’ health department. People seeking vaccinations “can self-disclose their qualifying medical condition,” he said. “They do not need to provide documents to prove that they qualify.”
Juany Torres, a community organizer and advocate in San Antonio, said she’s heard of several similar cases at the Alamodome.“Some undocoumented folks that showed up were questioned about their diabetes or their asthma, and they were turned away and lost their appointment,” Torres said. They had been diagnosed in their home country and didn’t have their medical records on hand, she said. None have health insurance or a primary care doctor in the U.S. “They lost the time they had taken off work, they were embarrassed, and I had to re-convince them that they were worthy to go and that they should get their shot,” she said. In Texas, at least, requests for medical documentation should no longer be an issue: On March 29, the state transitioned to allow everyone age 16 and older to sign up for a vaccine.
According to internal government statistics and interviews with former officials, legal observers, advocates and congressional staff, those decisions came weeks or months after the first warning signs late last year that the number of unaccompanied minors crossing the southern U.S. border was rapidly increasing, forcing a scramble to set up facilities in a matter of days.
This article was published on Thursday, April 1, 2021 in ProPublica.
The startling images have appeared in one news report after another: children packed into overcrowded, unsafe Border Patrol facilities because there was nowhere else to put them. As of March 30, over 5,000 children were being held in Border Patrol custody, including more than 600 in each of two units in Donna, Texas, that were supposed to hold no more than 32 apiece under COVID-19 protocols.
But as the Biden administration’s Department of Health and Human Services scrambles to open “emergency” temporary facilities at military bases, work camps and convention centers to house up to 15,000 additional children, it’s cutting corners on health and safety standards, which raises new concerns about its ability to protect children, according to congressional sources and legal observers. And even its permanent shelter network includes some facilities whose grants were renewed this year despite a record of complaints about the physical or sexual abuse of children.
“There may be no good choices,” Mark Greenberg, a former head of the Administration for Children and Families (which oversees the unaccompanied-children program) at the HHS, told ProPublica. “Everything has to be weighed against the alternative. And the alternative is the backups at Customs and Border Protection. And recognizing how bad that is, it means that people have to make unpalatable decisions.”
According to internal government statistics and interviews with former officials, legal observers, advocates and congressional staff, those decisions came weeks or months after the first warning signs late last year that the number of unaccompanied minors crossing the southern U.S. border was rapidly increasing, forcing a scramble to set up facilities in a matter of days. No safety standards are in place at the new facilities — unlike controversial “influx” facilities used in the past.
One new site in Midland, Texas, was briefly closed to new arrivals after the state warned that its water wasn’t drinkable. That site and others have been staffed with volunteers who may not have passed background checks and speak no Spanish. One potential site — a NASA research center in Moffett, California — was scuttled after local protesters pointed out it was near a known Superfund site with high levels of toxic chemicals.
While previous influx sites have been criticized by Democrats in Congress and immigration advocates for sometimes falling short of state standards for licensed facilities, HHS has generally agreed to hold operators to those standards, said attorney Leecia Welch of the National Center for Youth Law. But it hasn’t committed to that now. Nor has HHS offered any other standards it plans to hold the facilities to. In a statement provided to ProPublica, Homeland Security Secretary Alejandro Mayorkas said, “We are seeing progress, but it takes time. In the meantime, the CBP workforce has done heroic work under difficult circumstances to protect these children.” HHS did not respond to a request for comment.
It’s “the Wild West,” Welch said, reflecting a view shared by other advocates and congressional staff monitoring the children’s care.
Meanwhile, the federal government has tried to revive its COVID-19-battered network of permanent residential facilities. In January, it quietly renewed three-year grants to several state-licensed providers that previously faced complaints of physical or sexual abuse of children. The facilities have defended their care without denying the allegations.
One grant went to a Texas facility that children were removed from in 2018 amid allegations that staffers were drugging them, and that had previously fired a staff member for placing a child in a chokehold in 2019. Two organizations that have faced repeated allegations of sexual abuse also had their grants renewed: a foster-care provider in New York accused of placing children with abusers, and a shelter in Pennsylvania where children accused the staff of abuse. The New York organization told ProPublica, “The safety of the youth in our care is of the utmost importance to us and has always been,” and it stressed that both staff and potential fosterers go through “extensive background checks.” Neither of the other facilities responded to requests for comment.
By federal law, children are to be held no longer than 72 hours in Border Patrol custody before they are transferred to HHS housing, except in emergency situations. As of March 30, however, over 2,000 children being held at the main Border Patrol facility in Donna had been there for more than 72 hours, according to reporters.
In recent years, Border Patrol facilities for children have lacked toothbrushes or medical supplies, and the fact that Border Patrol agents aren’t trained to deal with children raises risks that a child will become ill or even die in U.S. custody. This has convinced many officials working in the system that deals with unaccompanied migrant children (including some within Customs and Border Protection) that releasing kids into any HHS care is better than leaving them in Border Patrol custody.
HHS normally places children in a network of shelters while their relatives in the U.S. are identified and vetted (a process that, during the pandemic, has typically taken at least a month). When needed, HHS has also opened influx centers that can be set up in weeks and do not require state licensing. Now, with the assistance of the Federal Emergency Management Agency, HHS is opening new “emergency intake sites” in a matter of days, including two in convention centers in Dallas and San Diego.
HHS also relies on a network of state-licensed shelters, which are required to self-report violations found by state regulators to the federal government. A 2020 Government Accountability Office report found that HHS offered unclear instructions on how such violations should be reported. One grantee, which was cited by state auditors 70 times in two years for violations at three facilities, mentioned none of those violations in its reports to HHS.
A review by the Texas Impact Foundation, an advocacy organization, found that shelters in the state were cited for 68 violations involving physical abuse or unnecessary restraint of a child. In two cases, children were placed in chokeholds by staff members attempting to restrain them. (In both cases, the staffers responsible were fired.)
In an incident at a shelter near Houston in 2019, a child reported being held in a chokehold for over two minutes. The facility operator (initially operating under the name Daystar Residential Centers) closed in 2011 after a string of abuse allegations, only to reform under the name Shiloh Treatment Centers a few years later. In 2018, the facility was accused in a legal filing of sedating children with antipsychotic drugs. In response, a federal judge ordered the removal of all children who weren’t considered at risk of harming themselves or others. (The shelter did not respond to a ProPublica request for comment.)
Shiloh was among the 23 facilities awarded new three-year contracts on Jan. 1, receiving two grants totalling $2.6 million. The facility has held only a few children during the pandemic, and Welch said it’s possible that conditions have improved. At her last monitoring visit, she said, she heard none of the horror stories that children had told her in the past. But as the GAO report noted, HHS doesn’t explicitly look at past performance when evaluating grant renewals.
The HHS housing crunch has been badly exacerbated by the coronavirus pandemic. Children’s shelters, like other kinds of congregate housing, are under severe capacity restrictions that reduce available bed space.
The HHS shelter population was growing last fall, even before a federal judge ruled in November that the Trump administration had to take unaccompanied migrant children in, rather than expelling most of them from the U.S. immediately under a March public-health order issued by the Centers for Disease Control and Prevention. From Oct. 31 to Nov. 30, the number of children in HHS custody rose from about 2,000 to about 3,000. In mid-December, with about 3,500 kids in custody, HHS officials said in a briefing that shelters near the U.S.-Mexico border were already at 67% of their capacity limits under COVID-19. But HHS took no action to add capacity until Jan. 15, when it sent a message to other government agencies asking them to scout locations for potential influx sites.
Former DHS officials said that HHS has long resisted taking emergency measures, straining the agency’s relationship with Border Patrol. During a similar crunch in 2019, one former DHS official told ProPublica that HHS “refused to acknowledge the operational challenges” that were leading children to be marooned in Border Patrol custody for days, out of a belief that “immigration was kind of a third rail.”
“It’s no coincidence that in each of the surges since 2014, FEMA — the emergency-management arm of DHS — has had to step in,” another former DHS official said. “When the [HHS] system is overwhelmed by the number of intakes, they don’t have the FEMA-like capacity to think improvisationally, to rush resources, or to modify processes, and they become the bottleneck.”
On March 5, the CDC waived the COVID-19 capacity caps for migrant child shelters so HHS could take more children out of Border Patrol facilities. The Biden administration is now working with states to allow shelters to house more children while complying with state licensing requirements. But shelters are struggling to hire staff, as many qualified professionals still fear working in congregate housing because new coronavirus variants are spreading. HHS recently informed Congress that it has upped its incentive pay to help recruiting, but it’s unclear if that will be enough.
A senior administration official acknowledged in March that the number of beds being made available would at best be a few hundred a week — far too few compared to the number of children arriving.
When the Biden administration announced it was reopening the influx care facility in Carrizo Springs, Texas, in February, immigration advocates and some Democrats condemned it as another way to keep “kids in cages.” Meanwhile, the other influx facility opened by the Trump administration in 2019, at Homestead Air Reserve Base in Miami, was held in reserve. At present, it appears it won’t be reopened; Axios reportedthat Biden himself stepped in to veto the possibility.
But HHS policy requires influx facilities to “comply, to the greatest extent possible, with State child welfare laws and regulations (such as mandatory reporting of abuse), as well as State and local building, fire, health and safety code.” There are no such commitments in place for emergency facilities, according to Welch and congressional staff. It’s still not clear who will operate the facilities after the initial setup is completed, or whether HHS will require them to provide support services to children, such as mental health counseling or legal assistance.
People who work in the system often point out that the ultimate goal is to get children reunited with their U.S.-based relatives as quickly and safely as possible. The lack of support services might matter less if children did not end up staying at the new emergency sites for months, they argue.
“We would always want children in a good, safe, developmentally appropriate setting,” Greenberg told ProPublica. “But the issue is just really different for a child who is going to be somewhere for 30 days” compared to longer-term stays.
Ultimately, how long emergency sites remain open depends on how long children keep coming to the U.S. in numbers beyond what HHS can accommodate. Internal government estimates obtained by The Wall Street Journal predict that as many as 25,000 children could cross into the U.S. in May.
Without a federal system of NICU-specific oversight, regulation of the units falls to each state — and New Mexico isn't doing much. But over 30 other states show it can be done.
This article was published on Wednesday, March 31, 2021 in ProPublica.
New Mexico parents worrying over the health of an extremely preterm baby have another reason to be concerned: Their state government provides almost no oversight of the care provided by neonatal intensive care units.
Thirty-one states, including neighboring Arizona, Oklahoma, Texas and Utah, have laws or rules requiring oversight of neonatal intensive care hospitals, according to a 2020 Centers for Disease Control and Prevention study. Some of these states make sure that hospitals provide care at the levels they claim to, and some periodically review data on patient admissions, transfers and outcomes to identify potential problems.
Some states, like California, do both. New Mexico does neither.
The federal government does not set standards for NICUs.
A New Mexico In Depth and ProPublica analysis published Tuesday found that an Albuquerque hospital, Lovelace Women’s, had a death rate for extremely preterm babies roughly twice that of Presbyterian, a nearby maternity hospital that has a comparable NICU. Clinicians voiced concern about aspects of neonatal care at Lovelace. The hospital defended the care it delivered and objected to the news organizations’ focus on extremely preterm babies, noting that these newborns represent only 2% of the hospital NICU’s admissions. The hospital also questioned comparing its performance to that of another hospital rather than to national benchmarks. But experts said the disparity warranted further investigation.
It is unclear, however, who would conduct such an inquiry because New Mexico requires little oversight of neonatal intensive care facilities and does not monitor their patients’ outcomes. New Mexico’s hospital regulators have not set foot in Lovelace’s NICU, or the other two Albuquerque NICUs, Health Department spokesperson James Walton acknowledged.
Other states take a variety of steps to ensure the quality of neonatal care. Experts point to Texas and California as gold standards for NICU oversight.
Twenty-two states, including California, Nevada, Utah and Illinois, have legislation or policies describing plans that advise lower-level hospitals on where preterm babies should be sent to receive the best care, according to a 2017 CDC study. But New Mexico has no perinatal-care regionalization plan, Walton said. Medicaid records indicate that some extremely preterm babies wind up at New Mexico hospitals that are not equipped to care for them. Statewide, between 2015 and 2019, more than 300 extremely preterm babies were admitted to hospitals that didn’t have a NICU, according to state Medicaid program records. (More than 70% of births in the state are covered by Medicaid.)
Regional plans allow hospitals to specialize and make better use of their expertise in caring for preterm babies, said Dr. José Antonio Perez, a clinical professor of pediatrics at the University of Washington in Seattle and the NICU medical director at Swedish Issaquah Medical Center.
Lovelace and Presbyterian are both level 3 neonatal intensive care hospitals, which the American Academy of Pediatrics defines as facilities equipped and staffed to care for high-risk infants. In California and Illinois, top-tier, level 4 NICUs, which care for the sickest premature babies, monitor level 3 hospitals. In New Mexico, such an agreement would give University of New Mexico Hospital oversight of Lovelace and Presbyterian.
Some states assemble groups of hospital officials, experts and community members to study and make recommendations about hospital practices and policies. But New Mexico’s version of these perinatal-care collaboratives focuses on maternal rather than neonatal care, noted Dr. Scott A. Lorch, a professor of pediatrics and associate chair of the Division of Neonatology at the Children’s Hospital of Philadelphia, and a NICU oversight and outcomes expert.
In Arizona, Oklahoma, Utah and Texas, officials conduct on-site inspections to confirm each NICU’s level of care.
In Texas, inspections are done before the state officially designates a facility as a level 1, 2, 3 or 4 neonatal hospital. The American Academy of Pediatrics conducts the Texas inspections using teams that include clinicians who care for newborns at similar facilities, including a neonatologist, a NICU nurse and, if surgeries are performed on-site, a pediatric surgeon. The inspections include checking staff credentials and reviewing patient records.
“You can really tell by reading patient charts and seeing what they do, whether they adhere to their own policies, if they’re consistent,” said Harvard Medical School professor Dr. Ann Stark, who pioneered the American Academy of Pediatrics’ guidelines for levels of neonatal care and who leads its NICU Verification Program.
Evaluations are repeated every three years.
“We learn from every survey,” Stark said. “The more you do something, the better you get.”
But in New Mexico, the state government has no legal authority to verify whether hospitals meet specific standards. Any level-of-care requirements, if they exist at all, would be set in contracts between the hospital and Medicaid managed-care organizations hired by the state, according to Jodi McGinnis Porter of the state Human Services Department. Those agreements are secret. Not even the state can access them. “They’re proprietary,” McGinnis Porter said.
For the public, the shortcomings of New Mexico’s system — and the disparity in hospitals’ death rates for extremely preterm infants — are nearly invisible. The state does not analyze or publicly disclose specific hospitals’ outcomes, which could inform parents’ decisions about where to seek care.
Parents facing the birth of an extremely premature baby “literally have no way to tell or to compare” if their baby might do better at another hospital, said a Lovelace clinician who asked not to be named for fear of retribution. Making hospitals’ newborn outcomes public could force them to identify the causes of problems and address them, the clinician said. “Hospital transparency could save babies’ lives and save New Mexico families in the future from devastating heartbreak.”
Lovelace did not respond to questions about lax state oversight and later declined to respond to any comments made by clinicians who had been granted anonymity by New Mexico In Depth and ProPublica.
New Mexico parents are not the only ones in the dark about how well their local neonatal intensive care hospitals perform. Across the country, expectant parents have no way to assess which maternity hospitals have the best newborn outcomes, neonatal hospital experts and clinicians noted.
“A mom comes into labor at 25 weeks, and at one center you have 21% mortality, and at the other one you have 36% mortality. That information is not provided to the family,” said Perez.
For adult patients, a hospital’s survival or success rates for stroke, heart surgery or cesarean sections are available online. But similar information isn’t available for newborns. No government website compares babies’ outcomes like Medicare’s hospital comparison site does for adults. The Vermont Oxford Network, a hospital research collaborative that tracks infant care, does not publicly disclose hospitals’ NICU statistics. U.S. News & World Report has ranked 50 neonatal hospitals, but not Lovelace or Presbyterian.
There’s a “wall of silence that families and the public face with regard to the quality of care in NICUs,” said Dr. David C. Goodman, a professor at the Dartmouth Institute for Health Policy & Clinical Practice at Dartmouth College. Goodman has studied dozens of U.S. hospitals’ track records in caring for extremely preterm babies.
This dearth of information on neonatal hospital care also slows academic research that could improve outcomes, said Lorch and Goodman. (Lorch’s research team was unable to obtain data on outcomes at New Mexico NICU hospitals, data that researchers can readily obtain in other states, thanks to legal restrictions on the disclosure of the patient-level information.)
Experts said expectant parents should not have to wonder about the quality of newborn care when they choose a maternity hospital.
“It points to the need for greater transparency in health care outcomes, particularly for our most vulnerable populations,” Goodman said. “We can only improve care if it’s measured routinely and shared.”
House Democrats investigating the COVID-19 response say Trump adviser Peter Navarro pressured agencies to award deals worth hundreds of millions of dollars.
This article was published on Wednesday, March 31, 2021 in ProPublica.
A top adviser to former President Donald Trump pressured agency officials to reward politically connected or otherwise untested companies with hundreds of millions of dollars in contracts as part of a chaotic response to the COVID-19 pandemic, according to the early findings of an inquiry led by House Democrats.
Peter Navarro, who served as Trump’s deputy assistant and trade adviser, essentially verbally awarded a $96 million deal for respirators to a company with White House connections. Later, officials at the Federal Emergency Management Agency were pressured to sign the contract after the fact, according to correspondence obtained by congressional investigators.
Documents obtained by the House Select Subcommittee on the Coronavirus Crisis after a year of resistance from the Trump administration offer new details about Navarro’s role in a largely secretive buying spree of personal protective equipment and medical supplies.
But they also show he was among the first Trump officials to sense the urgency of the building crisis, urging the president to push agencies and other officials to “combat the virus swiftly in ‘Trump Time’” and cut through the red tape of the federal purchasing system.
In another communication, Navarro was so adamant that a potential $354 million contract be awarded to an untested pharmaceutical company that he told the top official at the Biomedical Advanced Research and Development Authority, or BARDA, “my head is going to explode if this contract does not get immediately approved.”
Navarro did not immediately respond to a request for comment.
The committee’s work backs up investigations by ProPublica and other news outlets into the more than $36 billion the federal government has awarded, much of it without traditional bidding and with little scrutiny, to address the COVID-19 pandemic.
At least five of the committee’s lines of inquiry are exploring issues reported by ProPublica, including the $96 million no-bid deal for respirators that was ordered by Navarro, a $34.5 million deal signed by the U.S. Department of Veterans Affairs that fell apart and ended with a contractor pleading guilty to fraud, a contract for masks awarded to a former Trump administration official, and the revelation that FEMA had paid millions to a contractor with a history of fraud allegations for unusable and unsanitary fake test tubes.
In a letter describing the subcommittee’s findings, Democrat James Clyburn of South Carolina and members of the committee told President Joe Biden’s emergency response team that Trump’s lack of action worsened the health crisis.
“The President rejected calls from governors to ensure that the country had sufficient (personal protective equipment) and other supplies to address the crisis, leading to severe shortages and forcing states and cities to compete on the open market,” they wrote.
The committee asked officials overseeing FEMA and the U.S. Department of Health and Human Services, along with the director of the National Archives, to provide records detailing Navarro’s actions and the circumstances behind several questionable contracts awarded in response to the pandemic, which has left more than 550,000 Americans dead and many more suffering.
“In the absence of a coordinated national plan, various White House officials pursued ineffective, ad hoc approaches to procuring certain supplies. Recently obtained documents show that White House officials pushed federal agencies to issue non-competitive contracts for certain pharmaceutical ingredients and other items — some of which would not be ready for many months or even years — even as acute shortages for surgical masks, nitrile gloves, gowns, and other items continued,” members of the subcommittee wrote.
The respirator deal, with Airboss Defense Group, a subsidiary of Canadian company Airboss of America, was reported by ProPublica in April 2020 after a highly unusual entry in federal procurement data indicated the contract had been directly ordered by the White House. The Trump administration provided few answers about the award, but records the company provided to Congress indicate the firm used an influential consultant to connect Navarro with Airboss CEO Patrick Callahan.
Retired four-star Army Gen. John Keane, whom Trump had recently awarded the Medal of Freedom, reached out to Navarro on behalf of Airboss and the company got a phone meeting with the White House Coronavirus Task Force, emails show. The emails indicate that the company delivered an initial batch of respirators to FEMA before any contract was awarded, and the company upped its production on the promise that the White House, and Navarro, would make a contract official. Emails indicate the company expected to be paid upfront, at contract signing. The federal government typically doesn’t pay until a contract is agreed to and a product is delivered.
Airboss’ parent company nearly tripled its sales in large part because of the deals Navarro helped broker, the subcommittee wrote, and saw a $12 million increase in profit from April to June 2020. The company said it hadn’t seen the subcommittee’s letters but defended its work with FEMA.
An Airboss spokesperson said in a statement that the company is “proud of its successful efforts to rapidly respond to the urgent requests of the then White House Coronavirus Task Force to help supply the U.S. Government with urgently-needed PPE equipment to save lives, and protect our front-line healthcare professionals in the battle against the COVID-19 pandemic. Within days of the request, ADG mobilized its extensive U.S. PPE manufacturing capabilities, and vast supply chain network to produce and begin delivering this critical equipment.”
In a separate contract negotiation, this time for generic pharmaceuticals, Navarro pressured FEMA and officials leading the effort to beef up a depleted national stockpile to award a potential $354 million deal to Phlow to make drug ingredients. In an email pressing BARDA officials Navarro wrote:
“This is a travesty. I need PHLOW noticed by Monday morning. This is being screwed up. Let’s move this now. We need to flip the switch and they can’t move until you do. FULL funding as we discussed.”
Democrats on the subcommittee noted that Phlow had never before received a federal contract and had incorporated just a couple months earlier, in January 2020. ProPublica left a message with a company spokeswoman, who has not yet responded.
In another public letter this month, the subcommittee expressed concern that Robert Stewart, the CEO of Federal Government Experts LLC, which was awarded a no-bid $34.5 million contract with the VA and a smaller deal with FEMA, wasn’t cooperating with its investigation.
This contradicts statements his lawyer made before a federal district judge just weeks before, that Stewart was helping congressional investigators, as he pleaded guilty to multiple counts of fraud. Stewart did not immediately respond to calls and text messages.
The two largest maternity centers in this state have drastically different death rates for extremely preterm babies. Here's how we analyzed the data for our investigation.
This article was published on Tuesday, March 30, 2021 in ProPublica.
A New Mexico In Depth and ProPublica investigation found that the tiniest, most premature babies born at Lovelace Women’s Hospital in Albuquerque died at higher rates than they did at a hospital a few miles away, Presbyterian.
The for-profit Lovelace and nonprofit Presbyterian are New Mexico’s largest maternity centers.
Data Sources
The most comprehensive data on newborn hospital outcomes is collected by the Vermont Oxford Network, or VON, an international neonatal intensive care unit research collaborative. VON maintains patient-level intake and care data for member NICUs, including those at Lovelace, Presbyterian and the University of New Mexico Hospital. The data can be used to calculate death rates at individual hospitals. Maternal and newborn demographics, prenatal care, medical procedures and complications, neonatal hospital transfer history and babies’ outcomes are also captured in the data.
VON data, however, is not public; the network discloses outcomes only to member hospitals. The group declined the news organizations’ request for mortality rates of extremely preterm babies at Lovelace and Presbyterian. UNM, which runs the state’s highest-level NICU, shared its de-identified VON database and annual reports in response to a public records request, but neither Lovelace nor Presbyterian would do the same. The hospitals and VON also refused to share the network’s national average death rate for extremely preterm babies.
Since we did not have access to VON data for Lovelace and Presbyterian, the news organizations obtained aggregate birth and death certificate data for extremely premature babies from the state Health Department’s Bureau of Vital Records and Health Statistics. Hospitals submit data on each live birth and in-hospital newborn death for babies born to legal residents of New Mexico. We initially analyzed data for the most recent available five years (2015-2019), broken down by gestational age and birth weight. We used this data to calculate hospital death rates. To do a more detailed secondary analysis, the news organizations obtained data for babies born during the most recent available 10 years, 2010-2019, based on gestational age. Because the longer time period included more births, it allowed comparisons of additional patient subgroups and variables.
Hospitals also report diagnostic and billing code data to the state Health Department’s Hospital Inpatient Discharge Database, or HIDD, which collects diagnosis and treatment information about patients admitted to every hospital in the state, except those operated by the federal government. We obtained aggregate HIDD data from the Health Department.
In devising our analysis, we worked with national experts in neonatal intensive care, including Dr. Scott A. Lorch, a professor of pediatrics and associate chair of the Division of Neonatology at the Children’s Hospital of Philadelphia and a leading authority on NICU outcomes, and Dr. David C. Goodman, a professor at the Dartmouth Institute for Health Policy & Clinical Practice at Dartmouth College. Goodman helped analyze the data, and the analysis was reviewed by Lorch.
What We Found
Babies born weighing less than 1,000 grams (or about 2 pounds) are called extremely low birth-weight, while those born before 28 weeks of pregnancy are labeled extremely preterm. (A full-term pregnancy is 39-40 weeks.) While most babies born before 28 weeks are also extremely low birth-weight babies, that is not always the case. To account for that, the news organizations initially evaluated death rates using both birth weight and gestational age for the most recent five years for which Health Department data was available: 2015-2019.
Using the Health Department birth and death certificate data, we calculated a neonatal death rate at each hospital, which measured the percentage of live-born babies who died at their birth hospital within 28 days of delivery. We found that:
Between 2015 and 2019,34% of Lovelace’s 88 extremely low birth-weight infants died at the hospital, compared to 17% of Presbyterian’s 197.
In those same years, 36% of Lovelace’s 84 extremely preterm babies died there, compared to 21% of Presbyterian's 170.
The extremely preterm neonatal death ratesat each hospital didn’t change much when calculated for the entire 10 years between 2010 and 2019: 36% for Lovelace vs. 22% for Presbyterianwhen calculated by gestational age, and 33% vs. 20% using birth weights.
The news organizations’ analysis found no disparity between the hospitals’ death rates for babies born at older gestational ages and higher birth weights.
Hospital-wide death rates were calculated, accounting for deaths regardless of whether babies were admitted to the hospitals’ NICUs. Goodman, who was the lead author of the September 2019 report Dartmouth Atlas of Neonatal Intensive Care, advised New Mexico In Depth and ProPublica that the most accurate comparisons include the deaths of all extremely preterm babies, whether or not they were admitted to a NICU.
Only babies born at each hospital were counted toward the number of births. Only those who died at their birth hospital within 28 days were counted toward the number of deaths. (Including babies who died after being transferred to UNM’s NICU raised Lovelace’s extremely preterm neonatal death rate to 39%. Because Presbyterian transferred only one extremely preterm baby to UNM, in 2013, and they survived, that hospital’s death rate was unaffected.)
The analyses omitted babies considered “pre-viable” (those delivered before 21 weeks of pregnancy or weighing less than 350 grams), because they would likely die regardless of medical intervention, according to the state Health Department.
As discussed, some babies born at Lovelace and Presbyterian were transferred to UNM for care. Additionally, neonatal transport team logs suggest each hospital sent a handful of babies to out-of-state hospitals. The transport team logs were not detailed enough to allow us to remove all extremely preterm babies who were transferred out of state from our death-rate calculations. Therefore, our death rate treated all babies transferred out of Lovelace and Presbyterian as if they had received care at their birth hospital and lived, almost certainly making our death rates underestimates.
In addition to in-hospital deaths, we also examined how frequently Lovelace and Presbyterian transferred newborns to UNM Hospital, the state’s only top-tier, level-4 NICU hospital.
Having the UNM NICU’s VON data allowed us to analyze the frequency of transfers to UNM, and the condition of and outcomes for those transferred babies. We found:
Lovelace transferred more than three times as many newborns as Presbyterian to UNM between 2015 and 2019. Lovelace sent 66 babies, both full term and preterm, while Presbyterian transferred 17 babies, none of them preterm.
Close to half (46%) of Lovelace-born extremely preterm babies either died at the hospital or were transferred to UNM between 2015 and 2019.
Of 18 babies with necrotizing enterocolitis, or NEC — an inflammatory intestinal disorder and leading cause of extremely preterm newborn hospital deaths — who were transferred to UNM since 2012, 15 came from Lovelace. Twelve required intestinal surgery, and two died within hours of their arrival. Only one Lovelace baby was transferred with NEC and survived without surgery.
We also found a discrepancy in the number of Lovelace babies diagnosed with NEC when we compared the HIDD data and UNM’s VON intake logs. The hospital reported four cases of neonatal NEC to the state between 2015 and 2019, but the UNM VON data documented the arrival of 11 Lovelace babies with NEC during those years. Lovelace declined to explain the discrepancy.
In addition to comparing Lovelace to Presbyterian, the news organizations sought a national comparison rate for extremely preterm babies’ death rates at level-3 neonatal hospitals, but found a dearth of publicly available data. Most published studies are based on data that is more than a decade old.
In response to questions from the news organizations, however, the Centers for Disease Control and Prevention provided a national death rate for extremely preterm infants. The CDC’s rate included all hospitals, regardless of the facility’s level of care, using the same gestational age and birth weight parameters used in New Mexico In Depth and ProPublica’s analysis. The CDC found a national, hospital-wide extremely preterm neonatal death rate for 2010-2018 of 28%, near the midpoint between Lovelace’s 36% and Presbyterian’s 22% for 2010-2019.
The CDC’s national death rate might be higher than a rate for only level 3 hospitals would be, because it includes hospitals with level 1 and 2 neonatal designations, which are less equipped to care for these babies.
Experts advised against comparing level 3 facilities like Lovelace and Presbyterian to level 4 neonatal hospitals like UNM, because level 4 hospitals treat the sickest newborns and have more medical subspecialists and surgical experts on staff, making it difficult to interpret differences. However, for completeness, we calculated death rates for UNM, using the Health Department data and the same methods described above for Lovelace and Presbyterian. The 2015-2019 death rates for extremely low birth-weight babies and extremely preterm babies born at UNM were 29% and 33%, according to the news organizations’ analysis.
Scrutinizing Risk Factors
The cause of the disparity in Lovelace’s and Presbyterian’s extremely preterm neonatal death rates is not clear. Possibilities include one hospital having a sicker patient population, differences in patient care, or both.
The Health Department provided additional breakdowns of outcomes by patient demographics and treatment details, none of which alone explained the difference in death rates. The summary-level data did not allow us to examine several variables in combination.
Babies born at 21 to 23 weeks’ gestation are considered “peri-viable” and resuscitation practices for these babies vary between hospitals, experts and Albuquerque clinicians said, which may lead to differing outcomes.
After excluding babies born at 21-23 weeks’ gestation who died without being resuscitated at delivery from the analysis, Lovelace’s extremely preterm neonatal death rate was 29%, compared to 19% at Presbyterian. Excluding all babies who died within an hour of delivery, regardless of gestational age or resuscitation reports, Lovelace’s death rate was 26%, compared to 18% at Presbyterian and a CDC-provided national rate of 22%.
(Goodman warned that resuscitation numbers are unreliable because hospitals frequently fail to report them.)
By 24 weeks’ gestation, resuscitation at delivery is always attempted, experts and clinicians said. When only babies born at 24-27 weeks’ gestation were included in the analysis, the death rate at Lovelace was 23% vs. 9% at Presbyterian for 2010-2019. The CDC-provided national rate for this group was 15%.
Another explanation for the death-rate disparity could have been if Lovelace had a disproportionate number of 21- or 22-week-gestational-age babies, who have poorer outcomes than babies born at 24-27 weeks. But we found that the distributions of births by week of gestation at the two hospitals were very similar.
The state Health Department provided demographic and medical treatment details for extremely preterm babies born at 24-27 weeks’ gestation. Lovelace’s higher death rate persisted in analyses of that data. For example, extremely preterm twins and triplets often fare worse than single-born babies. But this did not explain the hospitals’ death-rate disparity. Nor did maternal race or ethnicity, differences in the proportion of extremely preterm babies who were boys (boys tend to have worse outcomes than girls), or differences in prenatal therapies. Medically induced labor and other risk factors for extremely preterm babies, such as the proportion of teen mothers, mothers who underwent infertility treatment or mothers who had cesarean-section deliveries also did not account for the disparity.
Discrepancies in numbers for NICU admissions and birth defects precluded analysis of that data. All extremely preterm babies who survive delivery should be admitted to the hospitals’ NICUs, clinicians and experts agreed, but there were babies at both hospitals for whom there were neither NICU admissions records nor death certificates. Neither Lovelace nor Presbyterian reported birth defects with extremely preterm babies’ birth certificate data, but a handful of death certificate reports note birth defects as a cause of death. There was only one record of a Lovelace extremely preterm baby being transferred to UNM in the first 24 hours after delivery, so transfers should not explain the missing NICU admissions data. When asked for comment, the hospitals did not acknowledge or explain the discrepancies.
Identifying the causes of the hospitals’ extremely preterm neonatal death rate disparities would require access to patient records or to completely reported, patient-level records, experts said.
Lovelace Responds
Lovelace presented several objections to our analyses. The hospital objected to comparing its extremely preterm newborns’ death rates to those of Presbyterian or any other individual hospital, arguing that comparisons should only be made to national benchmarks.
Goodman defended comparisons of outcomes between nearby level 3 neonatal hospitals: “A comparison within the same community, serving similar populations, operating under similar state policies and regulations, is of the highest value.”
And the news organizations obtained a national rate from the CDC, as described above, which was lower than Lovelace’s death rate.
In addition, the hospital contested the decision to look at hospital-wide outcomes for babies, regardless of whether or not they were admitted to the hospitals’ NICUs. Lovelace asserted that only NICU deaths should be measured because hospital-wide rates include deaths in the delivery room and could include nonviable babies. Presbyterian officials did not object to a hospital-wide comparison.
Lovelace said its NICU-only 2015-2019 death rate for extremely low birth-weight newborns was 22%. They would not say how the 22% NICU-only death rate compared to national rates in the VON. Presbyterian refused to disclose its NICU-only death rate.
Goodman rejected Lovelace’s objection to hospital-wide comparisons, noting that NICU staff should be present at the delivery of extremely preterm babies and that his research team includes “every extremely preterm baby who dies ... in our research. They are cared for by the NICU team and are the responsibility of the NICU team whether or not they are administratively admitted to a hospital’s NICU.”
Another objection from Lovelace was the decision to calculate death rates for extremely low birth-weight newborns in the first place, noting that babies born weighing less than 1,000 grams represent only 2% of the hospital’s NICU-admitted babies. “This sample size is too small from which to derive any conclusions about the overall quality of care being provided,” Lovelace Vice President for Marketing Serena Pettes wrote in an email.
But extremely preterm babies are a formally recognized and widely studied patient population at neonatal hospitals. The American College of Obstetricians and Gynecologists defines as extremely preterm babies born before 28 weeks of gestation, the definition we employed. While extremely preterm babies do make up a small portion of all NICU admission, between 2010 and 2019, more than 500 such babies were born at Lovelace and Presbyterian.
Lax state oversight leaves unanswered questions about the deaths of extremely preterm babies at Albuquerque's Lovelace Women's Hospital, which markets itself as a state-of-the-art newborn facility. Experts say transparency could save lives.
This article was published on Tuesday, March 30, 2021 in ProPublica.
Note: This story contains a description of the death of an infant.
ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up to receive our biggest stories as soon as they're published.
It was morning shift change at Lovelace Women's Hospital in Albuquerque, New Mexico. In the neonatal intensive care unit, the lights were dimmed, as usual. People spoke in hushed tones typical of the NICU. But an arriving clinician knew immediately that something had gone wrong.
A "crash cart" carrying resuscitation equipment was positioned next to a newborn incubator, the enclosed cribs that keep preterm babies warm. Nurses stood nearby with grim expressions.
The incubator light illuminated an infant's swollen, discolored belly.
"I'll never forget what this baby looked like," recalled the Lovelace clinician, who asked not to be identified for fear of retribution. "His abdomen was black and taut and almost the size of a grapefruit."
The day before, the infant had been a little cold and had spit up, which wasn't particularly unusual. "It was something to watch, but nothing was horribly wrong," the clinician said.
Overnight, the baby's condition had worsened. Now, he was on a ventilator, his tiny heart's contractions slowing. His swollen abdomen prevented staff from administering chest compressions.
"There was nothing we could do," the clinician said. "He died."
The infant's gut had stopped functioning, clogging his feeding tube with undigested food. That is sometimes a sign of an inflammatory condition of the intestines, called necrotizing enterocolitis or NEC, that's a leading cause of hospital deaths among extremely preterm babies.
These babies' problems can spiral into life-threatening conditions in a matter of hours. There's no indication that Lovelace improperly handled the infant's treatment. But extremely preterm babies died at the hospital with striking frequency, according to an analysis of state health data by New Mexico In Depth and ProPublica.
A yearlong investigation by the news organizations found that at Lovelace, the tiniest, most premature babies died at up to twice the rate as they did a few miles away, at Presbyterian Hospital, another major maternity and newborn facility.
New Mexico In Depth and ProPublica also found that Lovelace transferred more than three times as many newborns as Presbyterian to the University of New Mexico Hospital, the state's only top-tier, level-4 regional referral NICU, where the sickest of the state's newborns are sent for care.
All told, between 2015 and 2019, close to half — 46% — of the 84 extremely preterm babies born at Lovelace either died at the hospital or were transferred to UNM, according to Health Department data and UNM NICU records. Twenty-one percent of the 170 extremely preterm babies born at Presbyterian died, and none was transferred to UNM during those years.
Experts said the findings should be investigated.
The disparity "should be of concern to families, the community, and the state of New Mexico," said Dr. David C. Goodman, a professor at the Dartmouth Institute for Health Policy & Clinical Practice at Dartmouth College. Goodman, who was the lead author of the September 2019 report Dartmouth Atlas of Neonatal Intensive Care, has studied the track records of dozens of U.S. hospitals that care for extremely preterm babies.
It is also a concern to Albuquerque medical professionals who care for these babies. Three Lovelace and UNM Hospital clinicians who contacted New Mexico In Depth and ProPublica about Lovelace voiced concerns about extremely preterm babies' outcomes and pointed to broader issues related to their care. Those issues included the lack of an on-site surgeon and other specialists, the timing of transfers to UNM when babies needed higher-level care, and disagreement over how best to care for these fragile newborns.
Lovelace and Presbyterian initially agreed to share detailed data on their neonatal outcomes with New Mexico In Depth and ProPublica, but ultimately refused to provide most of the promised information. To investigate the clinicians' concerns, the news organizations obtained state Health Department data on these newborns' deaths.
To better understand the disparity in outcomes between Lovelace and Presbyterian hospitals, New Mexico In Depth and ProPublica also obtained UNM hospital-transfer and intake logs, along with emails and other documents, and interviewed more than two dozen people, including current and former Albuquerque clinicians, neonatal transport team members, hospital officials and nationally recognized NICU experts. NICU administrators at Lovelace and Presbyterian spoke to the news organizations in early 2020. Since then, Lovelace has not made administrators available for comment.
Lovelace rejected any comparison that focused only on extremely preterm babies or that contrasted their death rates to Presbyterian's.
"Comparing us to only one other hospital as opposed to national benchmarks is flawed and not an appropriate basis for drawing broad conclusions," Lovelace Vice President for Marketing Serena Pettes wrote in an email.
Pettes said the news organizations were "seeking to undermine our quality of care" through a "misinterpretation of data." Asked how the hospital's data had been misinterpreted, she did not respond.
Three experts told New Mexico In Depth and ProPublica that it's cause for concern when level 3 neonatal hospitals, a designation that covers both Lovelace and Presbyterian, have higher death and transfer rates than neighboring facilities. Without access to patient records, numbers for neighboring hospitals were the best proxy to use in gauging outcomes, they said.
"Anytime you have a hospital that is delivering a lot of tiny babies that it has to send out or that die before you can send them out, you really have to ask the question, 'Are the mothers delivering at the right place?'" said Dr. Jeffrey B. Gould, a professor of pediatrics at Stanford University. A pioneer in NICU quality improvement, Gould is co-founder and chief executive of the California Perinatal Quality Care Collaborative.
Moreover, lax state oversight and a lack of hospital transparency about outcomes severely curtails the public's ability to know just how well hospitals are serving this vulnerable population. The state's loose regulations stand in sharp contrast to other states, like Texas and California, which mandate periodic inspections of neonatal intensive care hospitals and scrutiny of newborn outcomes.
The Lovelace clinician who witnessed the baby boy's death said New Mexico's lack of oversight is one reason families are in the dark about extremely preterm babies' outcomes at the hospital. Another is a culture of silence at the hospital when things go wrong: "We don't even talk about it within the NICU, but especially to the parents."
Comparing Lovelace and Presbyterian
Lovelace delivered about 2,700 babies in 2019; nearby Presbyterian delivered about 3,000, making those two hospitals the state's largest maternity centers. They are also the state's only level 3 neonatal intensive care hospitals, according to the state Health Department. Together, they delivered 28% of babies born statewide between 2010 and 2019, and 37% of the state's extremely preterm babies.
"If your pregnancy falls into the high-risk category, you can rest assured you'll be getting the best medical care available anywhere in the region," a Lovelace advertisement states.
Overall, Lovelace and Presbyterian had similar newborn death rates, the news organizations found — except when it came to the tiniest and most premature newborns.
Babies weighing less than about 2 pounds at birth are called extremely low birth weight, while those born before 28 weeks of pregnancy are labeled extremely preterm. While most extremely preterm babies are also extremely low birth-weight babies, that is not always the case. To account for all of these vulnerable infants, the news organizations evaluated death rates using both birth weight and gestational age.
Between 2015 and 2019, 34% of Lovelace's 88 extremely low birth-weight infants died, compared to 17% of Presbyterian's 197, according to the New Mexico in Depth and ProPublica analysis, which compared birth and death certificate data at the two hospitals. The calculations excluded babies who were born elsewhere and transferred to Lovelace or Presbyterian, and babies born weighing less than 350 grams, who are not considered viable.
The analysis also found a disparity in the death rate when calculated by gestational age, instead of by birth weight. Lovelace's hospital-wide death rate for extremely preterm babies was 36%, compared to Presbyterian's 21%.
"The differences are meaningful," Goodman said of the hospitals' death rates. "They're not slight differences. These are large differences."
"Thirty-six percent is higher than expected for this gestational age group," Goodman said. "It raises the question as to whether the care provided meets the needs of the newborn patients."
The news organizations also found that Lovelace transferred 66 infants, both full term and preterm, to the level 4 NICU between 2015 and 2019, while Presbyterian sent 17 babies, none of them preterm, UNM records showed.
"Every time we have a tiny baby, I cringe. We have a terrible track record with them," said the Lovelace clinician who was present when the baby died.
Another Lovelace NICU clinician voiced similar concerns about extremely preterm babies' outcomes, both in the delivery room and the NICU.
"They have only rudimentary policies in place for micropreemies, but not nearly as comprehensive as things that I've seen at other hospitals," the second Lovelace clinician said. (A copy of Lovelace's NICU infant care guidelines, reviewed by the news organizations and dated Feb. 1, 2017, briefly mentions extremely preterm and extremely low birth-weight babies' care in sections about nurse-to-patient ratios, thermoregulation and water loss, skin care, and body positioning.)
The clinicians were two of eight current and former Lovelace care providers who spoke to New Mexico In Depth and ProPublica about newborn care at the facility on the condition that they remain anonymous because speaking publicly could hurt their employment within New Mexico's small medical community. Not all of them were critical of the hospital.
"It's a well-run unit," a former Lovelace clinician said of the NICU. "I wouldn't hesitate to have my own child in that unit."
Pettes declined to respond to clinicians' concerns and criticized the news organizations' decision to grant them anonymity. "We are not able to respond to anonymous sources," she wrote in an email, calling the clinicians' comments "opinions, and not facts."
New Mexico's NICU Hospitals Face Little Regulatory Scrutiny
The American Academy of Pediatrics defines level 3 NICU hospitals as facilities equipped to care for high-risk babies. Unlike lower-level hospital nurseries, they are staffed by specialists experienced in treating the most at-risk and medically complex newborns.
In New Mexico, however, there's no legal definition of what constitutes a level 3 NICU. The state has no NICU-specific legal or regulatory oversight authority. Nor does the state have a role in certifying NICUs or monitoring newborn outcomes. The state has not conducted on-site inspections of any of the three Albuquerque NICU hospitals and has not analyzed neonatal death rates at the facilities, state Health Department spokesperson James Walton acknowledged.
The New Mexico Department of Health collects some details from the hospitals about mothers and newborns, including which mothers received infertility treatments to become pregnant, whether labor was induced and whether the delivery was by cesarean section. But the state cannot impose penalties on hospitals that fail to report such data, Health Department officials confirmed.
For example, New Mexico In Depth and ProPublica identified a discrepancy in Lovelace's reporting of cases of NEC, the dangerous intestinal condition. Lovelace reported only four neonatal NEC cases to the Health Department between 2015 and 2019, but NICU intake records at UNM showed 11 babies who were transferred from Lovelace with NEC during those years, including four in 2019 alone.
Goodman helped New Mexico In Depth and ProPublica analyze the Health Department's birth and death data.
The causes of disparities in outcomes between institutions are not always clear. Possibilities include a sicker patient population and less effective care, Goodman said.
Lovelace repeatedly declined to identify demographic or patient factors that might explain the disparity in the hospitals' extremely preterm neonatal death rates.
Identifying those factors requires careful review of patients' medical records, experts said. New Mexico In Depth and ProPublica did not have access to patient records. But the news organizations attempted to identify possible explanations using the data Lovelace and Presbyterian reported to the state Health Department from 2010 to 2019.
Babies born at 21 to 23 weeks' gestation frequently die shortly after delivery, and resuscitation practices for the age group vary, which could lead to differing outcomes. But a 2-to-1 death-rate disparity persisted when the analysis included only babies born at 24-27 weeks' gestation, who are less likely to die shortly after delivery. The number of extremely preterm twins and triplets, who often fare poorly, also did not explain the death-rate disparity. Nor did differences in maternal race or ethnicity, prenatal therapies or other potential risk factors for extremely preterm babies, including the proportion of boy births, teen mothers, mothers who underwent infertility treatment or induced labor, or mothers who had cesarean-section deliveries.
Pettes claimed that for all NICU-admitted newborns — including lower-risk full-term babies and premature babies — Lovelace's neonatal death rate is "significantly lower than the national average," and has declined over time. "As a whole, our mortality rate is less than half of the national NICU average."
But according to the Health Department data, full-term babies make up a much larger proportion of the hospital's NICU population than extremely preterm newborns, obscuring the death rate for the hospital's most at-risk babies.
Pettes declined to share the national benchmark she cited from a neonatal intensive care unit research collaborative, the Vermont Oxford Network. The network discloses outcomes only to member hospitals and declined the news organizations' request for extremely preterm babies' mortality rates at Lovelace and Presbyterian.
Pettes also objected to the news organizations' comparison of hospital-wide death rates.
Pettes disclosed that 22% of Lovelace's extremely low birth-weight babies died after admission to the NICU during 2015-2019.
But Goodman said NICU-only rates are not a true reflection of a hospital's outcomes.
"We include every extremely preterm baby who dies … in our research," said Goodman. "They are cared for by the NICU team and are the responsibility of the NICU team whether or not they are administratively admitted to a hospital's NICU."
Lovelace did not provide a hospital-wide death rate for these fragile babies.
Hospital-wide death rates are important indicators because labor and delivery unit practices can also affect survival, and babies who die in the NICU are not always recorded as NICU deaths, a Lovelace clinician noted.
It was impossible for the news organizations to compare NICU-only data between the hospitals. Presbyterian would not provide its NICU-only death rate. In addition, birth and death certificate data showed discrepancies in the Health Department's data on NICU admissions. Extremely preterm babies who survive delivery should always eventually be admitted to NICUs, experts said, but the news organizations found infants for whom there was no record of a NICU admission or a death certificate.
The hospitals did not acknowledge or explain the discrepancies.
"Lovelace Specials"
Lovelace transferred more than three times as many newborns to UNM's level 4 NICU as did Presbyterian, UNM intake logs show. Ten of the Lovelace transfers were extremely low birth-weight infants, three of whom died at UNM. None of Presbyterian's transferred babies were extremely preterm or extremely low birth-weight infants.
Information about neonatal transfers can help regulators identify facilities that aren't meeting babies' needs or find problems that hospitals should address, experts say.
Comparing UNM NICU intake logs with state data showed that close to 90% of Lovelace and Presbyterian's transfers to UNM were not captured in Health Department data, because the state only requires hospitals to report transfers occurring in the first 24 hours after delivery.
"If you don't have the data, you can't make change," said Dr. Scott A. Lorch, a professor of pediatrics and associate chair of the Division of Neonatology at the Children's Hospital of Philadelphia, and a leading authority on NICU outcomes.
At UNM Hospital, babies who arrived in dire condition were sometimes called "Lovelace Specials," according to two former UNM NICU clinicians who asked not to be named for fear of retribution.
Some of the Lovelace babies who had NEC arrived at UNM without needed X-ray reports, or with X-rays taken from angles that can miss signs of a worsening condition, a UNM pediatric radiologist said.
"That's what I've seen based on imaging: Patients often arrived at UNM in more advanced stages of NEC," the radiologist said. Unlike UNM and Presbyterian, Lovelace does not have a pediatric radiologist on staff, the radiologist noted. Lovelace declined to comment.
One of the two former UNM clinicians said that when babies arrived from Lovelace, "you just had no idea what you were getting into."
Clinicians questioned not only the number of newborn transfers but their timing.
Lovelace is sometimes too slow to send babies in crisis to UNM Hospital, where surgery can be performed if needed, four clinicians from both Lovelace and UNM said. Lovelace declined to respond to their allegation.
The pace of transfer matters because NEC can progress in a matter of hours from subtle symptoms to a life-threatening condition requiring emergency surgery. It is not unusual for level 3 NICUs to have surgeons on call or to have a transfer agreement with other hospitals. But if a surgeon cannot perform emergency procedures on-site, timely transfers to surgical hospitals can be a matter of life or death.
Of 18 babies with NEC who were transferred to UNM since 2012, 15 came from Lovelace. There isn't a hard-and-fast rule about when to transfer a sick infant to a higher-level facility, but transfer logs showed that of the 15 Lovelace babies sent to UNM, 12 were in a condition that required surgery when they got there, and two — a 5-day-old girl and a 12-day-old boy — died within hours of their arrival. Only one Lovelace baby with NEC was transferred and survived without surgery.
When NEC is caught early, it can be treated with antibiotics, a former UNM clinician said. "But you don't want to wait until they're so, so, so, so sick and then try to send them," the clinician said.
"They just wait too long," said the Lovelace clinician who witnessed the boy's death, referring to cases the clinician handled. "Babies that might otherwise have survived did not because they didn't get them to a place where they could have a surgeon if they needed it."
The former UNM clinician added a key explanation: "That's really where we get a lot of the kids, especially from Lovelace, is not having those pediatric surgeons available."
Does Lovelace Have a Pediatric Surgeon?
The question of whether Lovelace does, in fact, have an on-site pediatric surgeon, as Presbyterian does, is subject to debate.
In March 2019, the New Mexico Health Department and the Centers for Disease Control and Prevention informed Lovelace that a survey of the state's maternity and neonatal hospitals had concluded that Lovelace was not operating a level 3 NICU, but instead a level 2 special-care nursery. State officials based their conclusion on the lack of a pediatric surgeon and a pediatric anesthesiologist at Lovelace.
Hospital administrators successfully appealed that determination, claiming in an email obtained by the news organizations that among the "providers available" at Lovelace was a pediatric surgeon and other experts "on site 24/7."
But Lovelace clinicians told New Mexico In Depth and ProPublica that the claim was misleading.
"They've been saying they're going to have pediatric surgery for almost a decade," one Lovelace clinician said.
In some states, hospitals are required to support such claims with documentation. But emails indicate the state Health Department's chief medical officer, Dr. Thomas Massaro, prevented other Health Department staff from asking Lovelace to provide the names and board certifications of medical specialists. Massaro told New Mexico In Depth and ProPublica, "Neither we nor CDC required documentation of any of the hospital claims or submissions."
There's a reason hospitals fight for level 3 status.
Lovelace Women's Hospital opened its $11 million NICU in September 2007, positioning itself to compete with Presbyterian and UNM in the state's lucrative newborn acute healthcare market. Lovelace markets itself as a state-of-the-art maternal and newborn hospital. Expectant parents are told that should anything go wrong, maternal and neonatal medical specialists are available to provide expert care. Front and center in that promise is the "Level 3 Neonatal Intensive Care Unit."
Extremely preterm babies cared for in the NICU are known as "million-dollar babies," several clinicians said. That's no exaggeration: Hospital price sheets suggest care for these babies may bring Lovelace more than $1.2 million per baby from insurers.
Newborn intensive care has brought a lot of money to Lovelace and its privately owned parent company, Nashville-based Ardent Health Services. Between 2015 and 2019, Lovelace Women's 53-bed facility received more than $99 million in payments from Medicaid for NICU patient care, while Presbyterian's 58-bed NICU received $75 million during the same period, according to state data.
"It is no secret that the NICU is Lovelace Women's Hospital's golden goose," said Wendy Walter, a former adult ICU charge nurse at Lovelace who provided "helping hands" when the NICU was short-staffed. (Walter was fired by the hospital in January for working more hours than authorized. She contends that she worked additional hours at shift's end to properly document patients' treatments.)
Months after successfully defending its level 3 status, Lovelace went further, informing the state Health Department last year that the facility merited recognition as a level 4 NICU. That could put it in competition with UNM, where extremely preterm babies can bring in more than $2 million per infant.
In a Jan. 10, 2020, email to Massaro, Lovelace's director of women's services, Dr. Abraham Lichtmacher, wrote that the hospital now had "pediatric surgery, which is represented by the pediatric surgeons from UNM as they have finalized and obtained their privileges at Lovelace Women's Hospital allowing them to perform their procedures on site."
Three current and former Lovelace clinicians expressed dismay that an administrator at the hospital made such a claim.
"They don't have surgical support staff, pediatric surgical nurses — or even a place to do baby surgeries," one said.
A few weeks after Lichtmacher emailed the state, UNM pediatric surgeon Dr. Jason McKee contradicted Lichtmacher's claim in an interview with New Mexico In Depth and ProPublica. Asked if he had surgical privileges at Lovelace, McKee told the news organizations in early 2020: "I have consulting privileges at Lovelace so I can go and see a child, but as of now we don't do surgery over there."
McKee was noncommittal when asked if that would change in the near future, but noted that it would require Lovelace to hire surgical support staff.
Lovelace recently declined to say if any pediatric surgeries have been performed at the hospital or if it has surgical support staff available to perform such operations.
"We have, and continue to maintain, pediatric surgeon availability for our patients but defer to the surgeon's clinical judgement as to the best place for those surgeries to occur to achieve the best outcomes for the patient," Pettes, the Lovelace vice president for marketing, wrote in an email. She declined to say if Lovelace employed a pediatric surgeon or pediatric surgery support staff, or if any neonatal surgeries have been conducted at Lovelace in recent years.
Job listings for Lovelace Women's posted as recently as Feb. 27 stated that the hospital "hopes to establish Pediatric Surgery in the future."
Lovelace last sought the Health Department's acknowledgement of its NICU as a level 4 facility in August, according to Walton, the department spokesman.
Lovelace refused to comment on its efforts to be recognized as a level 4 neonatal hospital.
A November 2020 Health Department document still listed Lovelace as a level 3 neonatal facility.
Why Lovelace Might Lag
One situation that experts say can cause disparities in outcomes at neonatal facilities is the number of patients they treat, or what researchers call "patient volume."
Hospitals that care for a larger number of high-risk babies have better outcomes, likely the product of their experience, said Lorch, the authority on NICU outcomes. Teams need practice working together to meet the needs of high-risk babies, experts said.
While it is unclear whether patient volume was a factor in higher death rates among the tiniest babies at Lovelace, the hospital had less than half the patient volume of extremely preterm babies that Presbyterian had. Each year, between 2010 and 2019, Lovelace delivered on average 16 extremely preterm babies, compared to 38 at Presbyterian.
Research by Lorch and others shows that patient volume can predict survival rates for more developed "very" preterm babies, those born at 28 to 32 weeks' gestation.
"You need experience caring for those babies," said Harvard Medical School professor Dr. Ann Stark, who pioneered the American Academy of Pediatrics' guidelines for levels of neonatal care.
The role hospitals' patient volumes plays in survival among extremely preterm babies — those born before 28 weeks of pregnancy — has not been studied. But research has shown that dedicating an expert clinical team to care for extremely preterm babies can improve outcomes. In that light, having three Albuquerque hospitals within a few miles of each other that each care for a relatively small number of extremely preterm babies might not make sense, some experts said.
"Maybe having one high-volume center is better than having two or three centers that take care of those same babies," said Dr. José Antonio Perez, a clinical professor of pediatrics at the University of Washington in Seattle and the NICU medical director at Swedish Issaquah Medical Center.
One way neonatal hospitals improve the quality of care after things go wrong is by convening formal staff morbidity and mortality, or "M&M," case reviews. New Mexico regulators do not require M&M case reviews, but NICU staff at both Presbyterian and UNM hold them anyway.
Lovelace officials repeatedly declined to say if they do.
New Mexico In Depth and ProPublica asked eight current and former clinicians who worked at the Lovelace NICU over the past decade if they had participated in M&M case reviews at Lovelace. None had. They spoke with the news organizations without the hospital's permission.
It would be "egregious" for a facility to not conduct M&M case reviews, Goodman said.
"Each newborn with a significant event, be it death or a significant morbidity that could even possibly be related to the care administered, I think those all require careful discussion to see if there is any systemic cause," Goodman said.
ProPublica's deputy data editor, Hannah Fresques, reviewed the analysis.
