The United States' inability to curb a treatable sexually transmitted disease shows the failures of a cash-strapped public health system. Increasingly, newborns are paying the price.

This article was published on Monday, November 1, 2021 in ProPublica.

By Caroline Chen.

When Mai Yang is looking for a patient, she travels light. She dresses deliberately — not too formal, so she won't be mistaken for a police officer; not too casual, so people will look past her tiny 4-foot-10 stature and youthful face and trust her with sensitive health information. Always, she wears closed-toed shoes, "just in case I need to run."

Yang carries a stack of cards issued by the Centers for Disease Control and Prevention that show what happens when the Treponema pallidum bacteria invades a patient's body. There's a photo of an angry red sore on a penis. There's one of a tongue, marred by mucus-lined lesions. And there's one of a newborn baby, its belly, torso and thighs dotted in a rash, its mouth open, as if caught midcry.Bottom of Form

It was because of the prospect of one such baby that Yang found herself walking through a homeless encampment on a blazing July day in Huron, California, an hour's drive southwest of her office at the Fresno County Department of Public Health. She was looking for a pregnant woman named Angelica, whose visit to a community clinic had triggered a report to the health department's sexually transmitted disease program. Angelica had tested positive for syphilis. If she was not treated, her baby could end up like the one in the picture or worse — there was a 40% chance the baby would die.

Yang knew, though, that if she helped Angelica get treated with three weekly shots of penicillin at least 30 days before she gave birth, it was likely that the infection would be wiped out and her baby would be born without any symptoms at all. Every case of congenital syphilis, when a baby is born with the disease, is avoidable. Each is considered a "sentinel event," a warning that the public health system is failing.

The alarms are now clamoring. In the United States, more than 129,800 syphilis cases were recorded in 2019, double the case count of five years prior. In the same time period, cases of congenital syphilis quadrupled: 1,870 babies were born with the disease; 128 died. Case counts from 2020 are still being finalized, but the CDC has said that reported cases of congenital syphilis have already exceeded the prior year. Black, Hispanic and Native American babies are disproportionately at risk.

There was a time, not too long ago, when CDC officials thought they could eliminate the centuries-old scourge from the United States, for adults and babies. But the effort lost steam and cases soon crept up again. Syphilis is not an outlier. The United States goes through what former CDC director Dr. Tom Frieden calls "a deadly cycle of panic and neglect" in which emergencies propel officials to scramble and throw money at a problem — whether that's Ebola, Zika or COVID-19. Then, as fear ebbs, so does the attention and motivation to finish the task.

The last fraction of cases can be the hardest to solve, whether that's eradicating a bug or getting vaccines into arms, yet too often, that's exactly when political attention gets diverted to the next alarm. The result: The hardest to reach and most vulnerable populations are the ones left suffering, after everyone else looks away.

Yang first received Angelica's lab report on June 17. The address listed was a P.O. box, and the phone number belonged to her sister, who said Angelica was living in Huron. That was a piece of luck: Huron is tiny; the city spans just 1.6 square miles. On her first visit, a worker at the Alamo Motel said she knew Angelica and directed Yang to a nearby homeless encampment. Angelica wasn't there, so Yang returned a second time, bringing one of the health department nurses who could serve as an interpreter.

They made their way to the barren patch of land behind Huron Valley Foods, the local grocery store, where people took shelter in makeshift lean-tos composed of cardboard boxes, scrap wood and scavenged furniture, draped with sheets that served as ceilings and curtains. Yang stopped outside one of the structures, calling a greeting.

"Hi, I'm from the health department, I'm looking for Angelica."

The nurse echoed her in Spanish.

Angelica emerged, squinting in the sunlight. Yang couldn't tell if she was visibly pregnant yet, as her body was obscured by an oversized shirt. The two women were about the same age: Yang 26 and Angelica 27. Yang led her away from the tent, so they could speak privately. Angelica seemed reticent, surprised by the sudden appearance of the two health officers. "You're not in trouble," Yang said, before revealing the results of her blood test.

Angelica had never heard of syphilis.

"Have you been to prenatal care?"

Angelica shook her head. The local clinic had referred her to an obstetrician in Hanford, a 30-minute drive away. She had no car. She also mentioned that she didn't intend to raise her baby; her two oldest children lived with her mother, and this one likely would, too.

Yang pulled out the CDC cards, showing them to Angelica and asking if she had experienced any of the symptoms illustrated. No, Angelica said, her lips pursed with disgust.

"Right now you still feel healthy, but this bacteria is still in your body," Yang pressed. "You need to get the infection treated to prevent further health complications to yourself and your baby."

The community clinic was just across the street. "Can we walk you over to the clinic and make sure you get seen so we can get this taken care of?"

Angelica demurred. She said she hadn't showered for a week and wanted to wash up first. She said she'd go later.

Yang tried once more to extract a promise: "What time do you think you'll go?"

"Today, for sure."

Syphilis is called The Great Imitator: It can look like any number of diseases. In its first stage, the only evidence of infection is a painless sore at the bacteria's point of entry. Weeks later, as the bacteria multiplies, skin rashes bloom on the palms of the hands and bottoms of the feet. Other traits of this stage include fever, headaches, muscle aches, sore throat and fatigue. These symptoms eventually disappear and the patient progresses into the latent phase, which betrays no external signs. But if left untreated, after a decade or more, syphilis will reemerge in up to 30% of patients, capable of wreaking horror on a wide range of organ systems. Dr. Marion Sims, president of the American Medical Association in 1876, called it a "terrible scourge, which begins with lamb-like mildness and ends with lion-like rage that ruthlessly destroys everything in its way."

The corkscrew-shaped bacteria can infiltrate the nervous system at any stage of the infection. Yang is haunted by her memory of interviewing a young man whose dementia was so severe that he didn't know why he was in the hospital or how old he was. And regardless of symptoms or stage, the bacteria can penetrate the placenta to infect a fetus. Even in these cases the infection is unpredictable: Many babies are born with normal physical features, but others can have deformed bones or damaged brains, and they can struggle to hear, see or breathe.

From its earliest days, syphilis has been shrouded in stigma. The first recorded outbreak was in the late 15th century, when Charles VIII led the French army to invade Naples. Italian physicians described French soldiers covered with pustules, dying from a sexually transmitted disease. As the affliction spread, Italians called it the French Disease. The French blamed the Neopolitans. It was also called the German, Polish or Spanish disease, depending on which neighbor one wanted to blame. Even its name bears the taint of divine judgement: It comes from a 16th-century poem that tells of a shepherd, Syphilus, who offended the god Apollo and was punished with a hideous disease.

By 1937 in America, when former Surgeon General Thomas Parran wrote the book "Shadow on the Land," he estimated some 680,000 people were under treatment for syphilis; about 60,000 babies were being born annually with congenital syphilis. There was no cure, and the stigma was so strong that public health officials feared even properly documenting cases.

Thanks to Parran's ardent advocacy, Congress in 1938 passed the National Venereal Disease Control Act, which created grants for states to set up clinics and support testing and treatment. Other than a short-lived funding effort during World War I, this was the first coordinated federal push to respond to the disease.

Around the same time, the Public Health Service launched an effort to record the natural history of syphilis. Situated in Tuskegee, Alabama, the infamous study recruited 600 black men. By the early 1940s, penicillin became widely available and was found to be a reliable cure, but the treatment was withheld from the study participants. Outrage over the ethical violations would cast a stain across syphilis research for decades to come and fuel generations of mistrust in the medical system among Black Americans that continues to this day.

With the introduction of penicillin, cases began to plummet. Twice, the CDC has announced efforts to wipe out the disease — once in the 1960s and again in 1999.

In the latest effort, the CDC announced that the United States had "a unique opportunity to eliminate syphilis within its borders," thanks to historically low rates, with 80% of counties reporting zero cases. The concentration of cases in the South "identifies communities in which there is a fundamental failure of public health capacity," the agency noted, adding that elimination — which it defined as fewer than 1,000 cases a year — would "decrease one of our most glaring racial disparities in health."

Two years after the campaign began, cases started climbing, first among gay men and later, heterosexuals. Cases in women started accelerating in 2013, followed shortly by increasing numbers of babies born with syphilis.The reasons for failure are complex; people relaxed safer sex practices after the advent of potent HIV combination therapies, increased methamphetamine use drove riskier behavior and an explosion of online dating made it hard to track and test sexual partners, according to Dr. Ina Park, medical director of the California Prevention Training Center at the University of California San Francisco.

But federal and state public health efforts were hamstrung from the get-go. In 1999, the CDC said it would need about $35 million to $39 million in new federal funds annually for at least five years to eliminate syphilis. The agency got less than half of what it asked for, according to Jo Valentine, former program coordinator of the CDC's Syphilis Elimination Effort. As cases rose, the CDC modified its goals in 2006 from 0.4 primary and secondary syphilis cases per 100,000 in population to 2.2 cases per 100,000. By 2013, as elimination seemed less and less viable, the CDC changed its focus to ending congenital syphilis only.

Since then, funding has remained anemic. From 2015 to 2020, the CDC's budget for preventing sexually transmitted infections grew by 2.2%. Taking inflation into account, that's a 7.4% reduction in purchasing power. In the same period, cases of syphilis, gonorrhea and chlamydia — the three STDs that have federally funded control programs — increased by nearly 30%.

"We have a long history of nearly eradicating something, then changing our attention, and seeing a resurgence in numbers," said David Harvey, executive director of the National Coalition of STD Directors. "We have more congenital syphilis cases today in America than we ever had pediatric AIDS at the height of the AIDS epidemic. It's heartbreaking."

Adriane Casalotti, chief of government and public affairs at the National Association of County and City Health Officials, warns that the U.S. should not be surprised to see case counts continue to climb. "The bugs don't go away," she said. "They're just waiting for the next opportunity, when you're not paying attention."

Yang waited until the end of the day, then called the clinic to see if Angelica had gone for her shot. She had not. Yang would have to block off another half day to visit Huron again, but she had three dozen other cases to deal with.

States in the South and West have seen the highest syphilis rates in recent years. In 2017, 64 babies in Fresno County were born with syphilis at a rate of 440 babies per 100,000 live births — about 19 times the national rate. While the county had managed to lower case counts in the two years that followed, the pandemic threatened to unravel that progress, forcing STD staffers to do COVID-19 contact tracing, pausing field visits to find infected people and scaring patients from seeking care. Yang's colleague handled three cases of stillbirth in 2020; in each, the woman was never diagnosed with syphilis because she feared catching the coronavirus and skipped prenatal care.

Yang, whose caseload peaked at 70 during a COVID-19 surge, knew she would not be able handle them all as thoroughly as she'd like to. "When I was being mentored by another investigator, he said: 'You're not a superhero. You can't save everybody,'" she said. She prioritizes men who have sex with men, because there's a higher prevalence of syphilis in that population, and pregnant people, because of the horrific consequences for babies.

The job of a disease intervention specialist isn't for everyone: It means meeting patients whenever and wherever they are available — in the mop closet of a bus station, in a quiet parking lot — to inform them about the disease, to extract names of sex partners and to encourage treatment. Patients are often reluctant to talk. They can get belligerent, upset that "the government" has their personal information or shattered at the thought that a partner is likely cheating on them. Salaries typically start in the low $40,000s.

Jena Adams, Yang's supervisor, has eight investigators working on HIV and syphilis. In the middle of 2020, she lost two and replaced them only recently. "It's been exhausting," Adams said. She has only one specialist who is trained to take blood samples in the field, crucial for guaranteeing that the partners of those who test positive for syphilis also get tested. Adams wants to get phlebotomy training for the rest of her staff, but it's $2,000 per person. The department also doesn't have anyone who can administer penicillin injections in the field; that would have been key when Yang met Angelica. For a while, a nurse who worked in the tuberculosis program would ride along to give penicillin shots on a volunteer basis. Then he, too, left the health department.

Much of the resources in public health trickle down from the CDC, which distributes money to states, which then parcel it out to counties. The CDC gets its budget from Congress, which tells the agency, by line item, exactly how much money it can spend to fight a disease or virus, in an uncommonly specific manner not seen in many other agencies. The decisions are often politically driven and can be detached from actual health needs.

When the House and Senate appropriations committees meet to decide how much the CDC will get for each line item, they are barraged by lobbyists for individual disease interests. Stephanie Arnold Pang, senior director of policy and government relations at the National Coalition of STD Directors, can pick out the groups by sight: breast cancer wears pink, Alzheimer's goes in purple, multiple sclerosis comes in orange, HIV in red. STD prevention advocates, like herself, don a green ribbon, but they're far outnumbered.

And unlike diseases that might already be familiar to lawmakers, or have patient and family spokespeople who can tell their own powerful stories, syphilis doesn't have many willing poster children. "Congressmen don't wake up one day and say, 'Oh hey, there's congenital syphilis in my jurisdiction.' You have to raise awareness," Arnold Pang said. It can be hard jockeying for a meeting. "Some offices might say, 'I don't have time for you because we've just seen HIV.' ... Sometimes, it feels like you're talking into a void."

The consequences of the political nature of public health funding have become more obvious during the coronavirus pandemic. The 2014 Ebola epidemic was seen as a "global wakeup call" that the world wasn't prepared for a major pandemic, yet in 2018, the CDC scaled back its epidemic prevention work as money ran out. "If you've got to choose between Alzheimer's research and stopping an outbreak that may not happen? Stopping an outbreak that might not happen doesn't do well," said Frieden, the former CDC director. "The CDC needs to have more money and more flexible money. Otherwise, we're going to be in this situation long term."

In May 2021, President Joe Biden's administration announced it would set aside $7.4 billion over the next five years to hire and train public health workers, including $1.1 billion for more disease intervention specialists like Yang. Public health officials are thrilled to have the chance to expand their workforce, but some worry the time horizon may be too short. "We've seen this movie before, right?" Frieden said. "Everyone gets concerned when there's an outbreak, and when that outbreak stops, the headlines stop, and an economic downturn happens, the budget gets cut."

Fresno's STD clinic was shuttered in 2010 amid the Great Recession. Many others have vanished since the passage of the Affordable Care Act. Health leaders thought "by magically beefing up the primary care system, that we would do a better job of catching STIs and treating them," said Harvey, the executive director of the National Coalition of STD Directors. That hasn't worked out; people want access to anonymous services, and primary care doctors often don't have STDs top of mind. The coalition is lobbying Congress for funding to support STD clinical services, proposing a three-year demonstration project funded at $600 million.

It's one of Adams' dreams to see Fresno's STD clinic restored as it was. "You could come in for an HIV test and get other STDs checked," she said. "And if a patient is positive, you can give a first injection on the spot."

On Aug. 12, Yang set out for Huron again, speeding past groves of almond trees and fields of grapes in the department's white Chevy Cruze. She brought along a colleague, Jorge Sevilla, who had recently transferred to the STD program from COVID-19 contact tracing. Yang was anxious to find Angelica again. "She's probably in her second trimester now," she said.

They found her outside of a pale yellow house a few blocks from the homeless encampment; the owner was letting her stay in a shed tucked in the corner of the dirt yard. This time, it was evident that she was pregnant. Yang noted that Angelica was wearing a wig; hair loss is a symptom of syphilis.

"Do you remember me?" Yang asked.

Angelica nodded. She didn't seem surprised to see Yang again. (I came along, and Sevilla explained who I was and that I was writing about syphilis and the people affected by it. Angelica signed a release for me to report about her case, and she said she had no problem with me writing about her or even using her full name. ProPublica chose to only print her first name.)

"How are you doing? How's the baby?"

"Bien."

"So the last time we talked, we were going to have you go to United Healthcare Center to get treatment. Have you gone since?"

Angelica shook her head.

"We brought some gift cards..." Sevilla started in Spanish. The department uses them as incentives for completing injections. But Angelica was already shaking her head. The nearest Walmart was the next town over.

Yang turned to her partner. "Tell her: So the reason why we're coming out here again is because we really need her to go in for treatment. ... We really are concerned for the baby's health especially since she's had the infection for quite a while."

Yang and colleague Jorge Sevilla looking for Angelica, who sometimes stays in a shack in the yard behind this house.

Angelica listened while Sevilla interpreted, her eyes on the ground. Then she looked up. "Orita?" she asked. Right now?

"I'll walk with you," Yang offered. Angelica shook her head. "She said she wants to shower first before she goes over there," Sevilla said.

Yang made a face. "She said that to me last time." Yang offered to wait, but Angelica didn't want the health officers to linger by the house. She said she would meet them by the clinic in 15 minutes.

Yang was reluctant to let her go but again had no other option. She and Sevilla drove to the clinic, then stood on the corner of the parking lot, staring down the road.

Talk to the pediatricians, obstetricians and families on the front lines of the congenital syphilis surge and it becomes clear why Yang and others are trying so desperately to prevent cases. Dr. J. B. Cantey, associate professor in pediatrics at UT Health San Antonio, remembers a baby girl born at 25 weeks gestation who weighed a pound and a half. Syphilis had spread through her bones and lungs. She spent five months in the neonatal intensive care unit, breathing through a ventilator, and was still eating through a tube when she was discharged.

Then, there are the miscarriages, the stillbirths and the inconsolable parents. Dr. Irene Stafford, an associate professor and maternal-fetal medicine specialist at UT Health in Houston, cannot forget a patient who came in at 36 weeks for a routine checkup, pregnant with her first child. Stafford realized that there was no heartbeat. "She could see on my face that something was really wrong," Stafford recalled. She had to let the patient know that syphilis had killed her baby. "She was hysterical, just bawling," Stafford said. "I've seen people's families ripped apart and I've seen beautiful babies die." Fewer than 10% of patients who experience a stillbirth are tested for syphilis, suggesting that cases are underdiagnosed.

A Texas grandmother named Solidad Odunuga offers a glimpse into what the future could hold for Angelica's mother, who may wind up raising her baby.

In February of last year, Odunuga got a call from the Lyndon B. Johnson Hospital in Houston. A nurse told her that her daughter was about to give birth and that child protective services had been called. Odunuga had lost contact with her daughter, who struggled with homelessness and substance abuse. She arrived in time to see her grandson delivered, premature at 30 weeks old, weighing 2.7 pounds. He tested positive for syphilis.

When a child protective worker asked Odunuga to take custody of the infant, she felt a wave of dread. "I was in denial," she recalled. "I did not plan to be a mom again." The baby's medical problems were daunting: "Global developmental delays ... concerns for visual impairments ... high risk of cerebral palsy," read a note from the doctor at the time.

Still, Odunuga visited her grandson every day for three months, driving to the NICU from her job at the University of Houston. "I'd put him in my shirt to keep him warm and hold him there." She fell in love. She named him Emmanuel.

Once Emmanuel was discharged, Odunuga realized she had no choice but to quit her job. While Medicaid covered the costs of Emmanuel's treatment, it was on her to care for him. From infancy, Emmanuel's life has been a whirlwind of constant therapy. Today, at 20 months old, Odunuga brings him to physical, occupational, speech and developmental therapy, each a different appointment on a different day of the week.

Emmanuel has thrived beyond what his doctors predicted, toddling so fast that Odunuga can't look away for a minute and beaming as he waves his favorite toy phone. Yet he still suffers from gagging issues, which means Odunuga can't feed him any solid foods. Liquid gets into his lungs when he aspirates; it has led to pneumonia three times. Emmanuel has a special stroller that helps keep his head in a position that won't aggravate his persistent reflux, but Odunuga said she still has to pull over on the side of the road sometimes when she hears him projectile vomiting from the backseat.

The days are endless. Once she puts Emmanuel to bed, Odunuga starts planning the next day's appointments. "I've had to cry alone, scream out alone," she said. "Sometimes I wake up and think, Is this real? And then I hear him in the next room."

Putting aside the challenge of eliminating syphilis entirely, everyone agrees it's both doable and necessary to prevent newborn cases. "There was a crisis in perinatal HIV almost 30 years ago and people stood up and said this is not OK — it's not acceptable for babies to be born in that condition. ... [We] brought it down from 1,700 babies born each year with perinatal HIV to less than 40 per year today," said Virginia Bowen, an epidemiologist at the CDC. "Now here we are with a slightly different condition. We can also stand up and say, 'This is not acceptable.'" Belarus, Bermuda, Cuba, Malaysia, Thailand and Sri Lanka are among countries recognized by the World Health Organization for eliminating congenital syphilis.

Success starts with filling gaps across the healthcare system.

For almost a century, public health experts have advocated for testing pregnant patients more than once for syphilis in order to catch the infection. But policies nationwide still don't reflect this best practice. Six states have no prenatal screening requirement at all. Even in states that require three tests, public health officials say that many physicians aren't aware of the requirements. Stafford, the maternal-fetal medicine specialist in Houston, says she's tired of hearing her own peers in medicine tell her, "Oh, syphilis is a problem?"

It costs public health departments less than 25 cents a dose to buy penicillin, but for a private practice, it's more than $1,000, according to Park of the University of California San Francisco. "There's no incentive for a private physician to stock a dose that could expire before it's used, so they often don't have it. So a woman comes in, they say, 'We'll send you to the emergency department or health department to get it,' then [the patients] don't show up."

A vaccine would be invaluable for preventing spread among people at high risk for reinfection. But there is none. Scientists only recently figured out how to grow the bacteria in the lab, prompting grants from the National Institutes of Health to fund research into a vaccine. Dr. Justin Radolf, a researcher at the University of Connecticut School of Medicine, said he hopes his team will have a vaccine candidate by the end of its five-year grant. But it'll likely take years more to find a manufacturer and run human trials.

Public health agencies also need to recognize that many of the hurdles to getting pregnant people treated involve access to care, economic stability, safe housing and transportation. In Fresno, Adams has been working on ways her department can collaborate with mental health services. Recently, one of her disease intervention specialists managed to get a pregnant woman treated with penicillin shots and, at the patient's request, connected her with an addiction treatment center.

Gaining a patient's cooperation means seeing them as complex humans instead of just a case to solve. "There may be past traumas with the healthcare system," said Cynthia Deverson, project manager of the Houston Fetal Infant Morbidity Review. "There's the fear of being discovered if she's doing something illegal to survive. ... She may need to be in a certain place at a certain time so she can get something to eat, or maybe it's the only time of the day that's safe for her to sleep. They're not going to tell you that. Yes, they understand there's a problem, but it's not an immediate threat, maybe they don't feel bad yet, so obviously this is not urgent…"

"What helps to gain trust is consistency," she said. "Literally, it's seeing that [disease specialist] constantly, daily. ... The woman can see that you're not going to harm her, you're saying, 'I'm here at this time if you need me.'"

Yang stood outside the clinic, waiting for Angelica to show up, baking in the 90-degree heat. Her feelings ranged from irritation — Why didn't she just go? I'd have more energy for other cases — to an appreciation for the parts of Angelica's story that she didn't know — She's in survival mode. I need to be more patient.

Fifteen minutes ticked by, then 20.

"OK," Yang announced. "We're going back."

She asked Sevilla if he would be OK if they drove Angelica to the clinic; they technically weren't supposed to because of coronavirus precautions, but Yang wasn't sure she could convince Angelica to walk. Sevilla gave her the thumbs up.

When they pulled up, they saw Angelica sitting in the backyard, chatting with a friend. She now wore a fresh T-shirt and had shoes on her feet. Angelica sat silently in the back seat as Yang drove to the clinic. A few minutes later, they pulled up to the parking lot.

Finally, Yang thought. We got her here.

The clinic was packed with people waiting for COVID-19 tests and vaccinations. A worker there had previously told Yang that a walk-in would be fine, but a receptionist now said they were too busy to treat Angelica. She would have to return.

Yang felt a surge of frustration, sensing that her hard-fought opportunity was slipping away. She tried to talk to the nurse supervisor, but he wasn't available. She tried to leave the gift cards at the office to reward Angelica if she came, but the receptionist said she couldn't hold them. While Yang negotiated, Sevilla sat with Angelica in the car, waiting.

Finally, Yang accepted this was yet another thing she couldn't control.

She drove Angelica back to the yellow house. As they arrived, she tried once more to impress on her just how important it was to get treated, asking Sevilla to interpret. "We don't want it to get any more serious, because she can go blind, she could go deaf, she could lose her baby."

Angelica already had the door halfway open.

"So on a scale from one to 10, how important is this to get treated?" Yang asked.

"Ten," Angelica said. Yang reminded her of the appointment that afternoon. Then Angelica stepped out and returned to the dusty yard.

Yang lingered for a moment, watching Angelica go. Then she turned the car back onto the highway and set off toward Fresno, knowing, already, that she'd be back.

Postscript: A reporter visited Huron twice more in the months that followed, including once independently to try to interview Angelica, but she wasn't in town. Yang has visited Huron twice more as well — six times in total thus far. In October, a couple of men at the yellow house said Angelica was still in town, still pregnant. Yang and Sevilla spent an hour driving around, talking to residents, hoping to catch Angelica. But she was nowhere to be found.

A congressional investigation prompted by ProPublica's reporting found Trump's "Mar-a-Lago crowd," wealthy civilians with no U.S. government or military experience.

This article was published on Monday, September 27, 2021 in ProPublica.

Former President Donald Trump empowered associates from his private club to pursue a plan for the VA to monetize patient data, according to documents newly released by congressional investigators.As ProPublica first reported in 2018, a trio based at Trump's Mar-a-Lago resort weighed in on policy and personnel decisions for the federal government's second-largest agency, despite lacking any experience in the U.S. government or military.

While previous reporting showed the trio had a hand in budgeting and contracting, their interest in turning patient data into a revenue stream was not previously known. The VA provides medical care to more than 9 million veterans at more than 1,000 facilities across the country.

"Patient data is, in my opinion, the most valuable assets [sic] the VA has," a consultant said in a June 2017 email released Monday by Democrats on the House Oversight Committee. "It can be leveraged into hundreds of millions in revenue" by selling access to major companies, he said.

The consultant, Terry Fadem, ran a private nonprofit for Bruce Moskowitz, a West Palm Beach, Florida, physician who was one of the three Trump associates given sweeping influence over the VA, known to officials as "the Mar-a-Lago crowd."

In response to Fadem's email, Moskowitz told then-VA Secretary David Shulkin that he had discussed the plan with interested companies including Johnson & Johnson, CVS and Apple. Shulkin replied that he liked the idea, according to the documents.

Senior officials scrambled to hire Fadem as a contractor, the emails show, but it's not clear whether his contract was awarded. "I am working on trying to understand why and where [h]is contract is stuck," Poonam Alaigh, then the agency's top health official, said in a June 2017 email. "I agree, having him on board as soon as possible will be critical."

The documents do not show what became of the plan or whether the VA ever sold access to patient data. Nor do the records include evidence that Moskowitz or the other Mar-a-Lago associates were in a position to profit personally.

A spokesman for the trio said as far as they know Fadem was not hired and the VA never acted on the licensing idea. "We were asked repeatedly by former Secretary Shulkin and his senior staff, as well as by the President, to assist the VA and that is what we sought to do, period," the three said in a statement.

Shulkin, Alaigh, Trump's office, the VA, Johnson & Johnson, CVS and Apple did not immediately respond to requests for comment. Fadem died in 2019.

The latest revelation helps complete the picture of the Mar-a-Lago triumvirate's extensive influence over Trump's agenda for veterans, a signature issue in his 2016 campaign. ProPublica's revelations about the men's day-to-day involvement prompted investigations by congressional committees and the Government Accountability Office, as well as a court challenge.

House Oversight Committee chairwoman Carolyn Maloney, D-N.Y., and House Veterans Affairs Committee chairman Mark Takano, D-Calif., said in a statement on Monday that the documents show "the secret role the trio played in developing VA initiatives and programs, including a 'hugely profitable' plan to monetize veterans' medical records."

"Ike Perlmutter, Marc Sherman, and Dr. Bruce Moskowitz, bolstered by their connection to President Trump's private Mar-a-Lago club, violated the law and sought to exert improper influence over government officials to further their own personal interests," the chairs said.

Perlmutter, Sherman and Moskowitz have previously said that they obtained no personal benefits, had no official role and exercised no formal authority.

But the newly released documents show that they did view themselves as an official advisory committee — and disregarded repeated warnings that they needed to comply with a Watergate-era transparency law.

"As the President asked, we can now formally create an official committee," Perlmutter, the group's leader and chairman of Marvel Entertainment, wrote in a February 2017 email after a meeting with Trump. Perlmutter is a Mar-a-Lago member and one of Trump's biggest political donors.

Perlmutter went so far as to rebuke White House staff for holding discussions without him.

"I am shocked and extremely disappointed with the manner in which you have engaged in individual communications with Apple — and intentionally excluded our broader team of subject matter experts," Perlmutter said in a March 2017 email to White House aides. "I understand that these backdoor discussions have apparently been occurring almost daily for weeks, and you have not told anyone and refuse to return phone calls and emails."

Official advisory committees are governed by the Federal Advisory Committee Act. The 1972 law, known as FACA, requires federal agencies to inform the public when they consult outside experts.

Administration officials repeatedly told the Mar-a-Lago trio that they would have to comply with the law. The law compels advisory committees to represent a range of views and disclose their activities to the public.

"It appears FACA may be implicated," a VA lawyer said in a January 2017 email that Shulkin shared with Moskowitz.

That April, White House aide Reed Cordish told Perlmutter directly, "You will need to form a FACA group."

But Perlmutter demurred, replying, "We have been advised that FACA does not apply because we are not a formal group in any way."

Instead, the group took efforts to conceal its activities, documents show. "We are still unsure what can be put in emails and what to discuss verbally," Moskowitz wrote to Shulkin in February 2017.

The group's spokesman maintained they weren't a formal committee and said complying with FACA was the agency's responsibility.

In March 2021, a federal appeals court in Washington held that a liberal veterans group could proceed with a lawsuit to enforce FACA's disclosure requirements around the Mar-a-Lago trio.

High-risk students in states and districts that have made masks optional are staying home.

This article was published on Wednesday, August 25, 2021 in ProPublica.

By Annie Waldman and Bianca Fortis  

When the coronavirus first swept across Florida last year, Angela Gambrel did everything she could to lock down her home in Sumter County, northeast of Tampa.

Her 10-year-old grandson Jayden has a rare brain disease that disrupts his immune system and impairs his memory, making it harder for him to process complex tasks. His doctors urged her to take every possible precaution against the virus. No more supermarket runs. No more football scrimmages with his Special Olympics team.

Jayden's school, like others across the state, halted in-person instruction, distributing worksheets to students to complete at home. The only time Jayden was around other people was when he had bloodwork done or underwent his monthly treatment about an hour away at Tampa General Hospital.

When schools reopened last fall, Gambrel, who's been Jayden's guardian since he was a toddler, kept him and his brother home, unwilling to risk exposing Jayden to a virus the world was just beginning to understand.

But without the intensive in-person instruction that he had been receiving for years, Jayden struggled, unable to keep up with his coursework.

Watching him languish, Gambrel knew he needed to go back to school as soon as it was safe, and so she was relieved to hear last month that the Centers for Disease Control and Prevention was advising school districts to have students and teachers mask and socially distance and to vaccinate staff. Jayden, she thought, could finally go back to school in person.

But a few days later, her plans were scuttled by Florida Gov. Ron DeSantis, a Republican, who imposed a statewide ban on mask mandates in schools. Without assurances that all the students in Jayden's school would be masked, Gambrel decided she could not take the risk of sending him back to the classroom.

"If they could just require masks, then these boys could have a life," Gambrel said.

As children have begun returning to classes this month in many parts of the country, the delta variant has dashed hopes of restoring something approaching normal life, upending school reopening plans everywhere and reigniting bitter fights over masking and other public health precautions.

For families whose children are too young to be eligible for vaccinations, the delta surge has once again left many parents weighing the risks of in-person learning, especially in states that are bucking federal recommendations to impose universal masking in schools. Some families have reluctantly shifted back to virtual instruction. Others have pulled their children out of the public school system altogether, opting for home-schooling.

But for families like the Gambrels, the stakes are exponentially higher. Children like Jayden, with complex health conditions, often are among those most in need of direct, specialized instruction that can only be delivered in person. Those same health conditions can also put children like Jayden at higher risk of infection and illness.

Nationwide, about 7.3 million students have significant disabilities that impact their education. About 15% of these students receive special education services for health conditions that limit their ability to learn, which include common conditions like diabetes, asthma or epilepsy, as well as rare disorders.

COVID-19, of course, is a new disease and researchers are a long way from fully understanding how it affects people with underlying medical conditions, especially children, who in the first waves were less likely to be sickened by the coronavirus. But the CDC says the "evidence suggests that children with medical complexity, with genetic, neurologic, metabolic conditions, or with congenital heart disease can be at increased risk for severe illness from COVID-19."

Chronic diseases affect millions of children nationwide. For example, more than 6 million kids suffer from asthma, over 200,000 live with Type 1 diabetes and more than 14 million are obese.

For medically vulnerable children, schoolwide masking is essential to allow them to safely return to school, health experts say. And being forced to stay at home while other students are able to learn in person could run counter to federal education law, which prohibits children like Jayden from being unnecessarily isolated because of their disabilities.

"All people with disabilities should receive services in the most integrated setting appropriate," said Ron Hager, managing attorney for education and employment at the National Disability Rights Network. "If not for the mask mandate, these kids could be educated in the most integrated setting."

With infections surging among children just as they are returning to classes, the fight over mask mandates is intensifying. Parents and civil rights groups have launched legal challenges against mandates in several states. Administrators in some school districts are ignoring state bans and imposing universal masking. And in Washington, President Biden has decried the politicization of public health measures like masking and directed his administration to ensure that state officials are taking the necessary steps for students to safely return to the classroom.

The administration has sent letters to eight states that have blocked mask mandates — Florida, Texas, Tennessee, Iowa, Arizona, Utah, Oklahoma and South Carolina — to tell them their policies violate "science-based strategies for preventing the spread of COVID-19," and the Department of Education said it may open civil rights investigations in states that block universal masking.

"We are not going to sit by as governors try to block and intimidate educators protecting our children," Biden said last week at a White House news conference.

Four years ago, Jayden entered first grade as an energetic 6-year-old who loved learning so much that he assigned himself extra homework after school. Soon after, he began to have episodes of extreme agitation, crawling on the floor and even hallucinating. When he stopped eating and sleeping, he was hospitalized; doctors diagnosed him with autoimmune encephalitis, a rare disease in which his own immune system attacks healthy brain cells and tissues.

The effects have been profound. His memory is impaired. His cognition has slowed. His behavior has turned erratic. "In the blink of an eye, he can go from being calm to all of a sudden he's destroying the house," said his grandmother.

"The warrior soldiers in your body," Gambrel said, recounting how she explained the disease to her grandson, "their job is to protect your body and fight off germs and ickies, but your warrior soldiers are crazy, they attack the good guys."

When Jayden returned to school after his diagnosis, Gambrel met with the administration to create a formal plan, known as an Individualized Education Program or IEP. Not only was Jayden learning at a slower pace, he also required one-on-one assistance throughout the day. Jayden started to improve, particularly after he began a new treatment of intravenous immunotherapy. He retained information better and engaged more with other kids.

But when the pandemic shut down schools, Jayden and his 9-year-old brother, Eli, who has autism, were thrust into a bubble of isolation to keep Jayden safe. "He misses kids, he misses people," she said, but "a lot of people were dying, and he didn't want it to be him."

The district, which serves about 9,000 students, gave Gambrel three options: in-person schooling, a remote live classroom or a full virtual program where children could learn at their own pace. Worried about COVID-19 as well as Jayden's limited attention span, Gambrel opted for the full virtual program, which used curriculum and software from Florida Virtual School, a statewide online education provider.

Gambrel understood that her grandsons would not have the one-on-one support required in their IEPs, but she did not expect the year to be the "nightmare" she experienced. Though online instructors graded worksheets and tests and could troubleshoot technology issues, they did not provide direct instruction and were difficult to track down for help with lessons, she said. The teaching fell on Gambrel, 56, who also worked from home as a medical billing administrator.

The pace of the online curriculum also moved too quickly for her grandsons. Gambrel said she felt that her family had been abandoned.

"It just becomes overwhelming, and they shut down and want no part of it," she said. "We were falling so far behind that we pretty much had to give up."

Hailey Fitch, a spokesperson for Florida Virtual School, said that its "courses are designed to offer students the flexibility to move at their own pace, but teachers play a critical role in ensuring the success of students."

Gambrel knew that her grandsons needed to be in school learning from an experienced teacher, and when she saw the federal guidance recommending that students wear masks and socially distance this fall, she believed the precautions would allow her boys to return to school.

Pediatricians and virus experts have backed the federal guidance, especially on masking in the classroom. Dr. Lawrence Kleinman, a professor of pediatrics at Rutgers Robert Wood Johnson Medical School in New Jersey, said that until vaccines are authorized for young children, masking is the most effective preventive measure.

"In a world in which children are not vaccinated and the virus is circulating in the community, both teachers and kids as well as staff need to be masked," he said. "From the very beginning we began this with a myth: that the virus spared kids. That myth has infected our thinking even as we've learned that it's not true."

But Gambrel's plan to send her grandsons back to school changed when DeSantis announced that no Florida school district would be permitted to mandate masks. "We should protect the freedoms and statutory rights of students and parents," the governor wrote in his order, claiming that giving parents the choice of whether to mask their children would help kids with disabilities and medical ailments, who would be harmed by wearing a mask.

In a statement this week to ProPublica, DeSantis' press secretary, Christina Pushaw, inaccurately claimed that there is no evidence that "mask mandates work to keep kids safe and healthy" and said health experts were giving families a false sense of security: "This is nothing more than government-sanctioned misinformation, and it's potentially dangerous."

In criticizing those recommendations, which she said were "unfair to parents of immune-compromised kids," Pushaw mentioned only "cloth face coverings." Some other types of widely available masks, such as surgical and KN95 masks, are more effective at preventing transmission, but experts have said a face covering of any sort is better than none.

Gambrel's district followed the governor's order, opening schools with masks optional. She was dismayed. "The state's attitude is to send them in, no problem," she said. "And they do need to be in-person, but they've not taken any measures to make it safe, especially with delta."

While Sumter County has abided by the governor's order, several other districts in Florida have defied it. At least seven districts, including those that include Fort Lauderdale, West Palm Beach and Tampa, have started the school year with some kind of masking requirement. In response, DeSantis has threatened to withhold state dollars from the districts, prompting the Biden administration to offer additional federal relief funds to districts that receive financial penalties.

DeSantis' approach to masking has also prompted legal challenges. In early August, a handful of parents of children with disabilities and complex medical needs sued the state, claiming the ban violates the Americans with Disabilities Act.

"Preventing my kid from going to school safely is a violation of federal law," said Judi Hayes, a plaintiff in the lawsuit and a mother of a child with Down syndrome. "Parents are terrified. ... We feel like we're ticking time bombs."

In response to the lawsuit, Pushaw defended the governor's position, saying that "under Florida law, parents have the right to make health and educational decisions for their own children."

Once Gambrel knew her grandsons would be virtual again, she recognized they would need more support than what they had received in virtual instruction last year, so a week before school began, she reached out to the district to discuss her options. No one responded, so she called the state education department, which told her, she said, that when she signed a home-schooling form to opt in to the virtual program last year, she had effectively withdrawn her grandsons from the public school. And that meant they were no longer entitled to the disability accommodations and services that were part of their IEPs. The Florida Department of Education did not respond to specific questions about services for students with disabilities in virtual schools.

Gambrel was baffled. She recalled signing a form indicating that she was selecting home school, but she didn't realize that by selecting the virtual program the district was pushing, she was taking her grandkids out of the local school system.

"I didn't expect to have all of their needs met through virtual, but I never dreamed that we would sign our rights away," she said.

Deborah Moffitt, the assistant superintendent of Sumter County School District, said that her staff spent ample time explaining to families the various learning options, which had been presented to the school board. In response to ProPublica's questions about accommodations for students with disabilities, she said the district is "no longer obligated to provide services to students when their parents enroll them in home education utilizing the asynchronous model of virtual education," adding that families had to sign a form indicating their intention to home-school.

For this year, Gambrel has kept her grandsons in the same program as last year, while looking for a new online program that will accommodate their needs.

As schools have slowly opened up across the country this fall, reports of classroom outbreaks and overwhelmed pediatric units have rattled the nerves of parents, many of whom are alarmed that the highly transmissible delta variant may affect children more than previous iterations of the virus. In Sumter County, 164 students and 31 staff members tested positive in the first two weeks of school, according to the district's public reporting.

Dr. Dean Blumberg, chief of pediatric infectious diseases at UC Davis Children's Hospital, said children with certain underlying conditions are at higher risk for severe COVID and are the pediatric patients most ending up in intensive care units.

Blumberg said masking in schools is common sense.

"It makes sense to take advantage of every tool possible to decrease transmission to make sure kids can go to school safely and to prevent children from being required to do distance learning," he said.

According to the American Academy of Pediatrics, new child infections have increased about 820% over the past seven weeks, with 180,000 cases reported last week, compared with only 19,500 cases tallied for the first week of July. As cases in children climb, many districts are scrambling to reintroduce remote schooling for quarantined children.

In some of the states that have banned mask mandates, officials had already decided to limit or eliminate virtual options in an effort to ensure students returned to in-person learning. But many of those decisions were made before the surge in infections from delta, and that has left many districts ill-equipped to pivot back to virtual learning.

Texas Gov. Greg Abbott, a Republican, has been one of the country's most vocal opponents of mask mandates, and his administration has stopped providing funding for remote learning. This has forced districts that want to resume online schooling to pay for it themselves.

In McKinney Independent School District in the northern suburbs of Dallas, schooling is only offered in-person, leading some families to feel pushed out of the public education system altogether.

When Colandra Ashley, a mother of two girls, ages 6 and 8, both with moderate asthma, learned that the district would not have a mask requirement, she realized that she and her daughters were stuck.

Ashley had been hospitalized as a child because of asthma, and she did not want to risk her own daughters' health. Her family had also lost five members to the virus. "To lose so many people and to have people be so careless, it frustrates me," she said. Her family's loss compelled every remaining adult to get vaccinated as soon as it was available, but her daughters are still too young.

Without a mask mandate, Ashley said, she is not comfortable sending her daughters to school. "I feel my hands are tied," she said.

The district, which spent nearly $70 million on a new high school football stadium that opened in 2018, said that it would not provide an online option for parents, citing a lack of state funding. The district did not respond to a request for comment.

Ashley, who before the pandemic was studying to be a teacher, withdrew her daughters from the district last week and started home-schooling them with the help of her mother. They have already planned field trips to local parks and ordered biology labs. When her daughters are able to be vaccinated, she intends to reenroll them for in-person school.

Collin County, home to McKinney ISD, has refused to institute a mask requirement in response to the delta variant, even as the region experiences ICU bed shortages. Facing criticism on how the lack of a mandate might impact schools, top county official Chris Hill defended his decision, stating "freedom is more important than education."

Other districts in Texas have created virtual programs to address the needs of families who do not feel safe sending their children back into schools. The Fort Bend school district, southwest of Houston, is using federal relief funds to pay for a remote learning program for a small group of students. The district said on its website that the virtual program will cost an estimated $10 million, including loss of funding from the state.

Sherry Williams, the district's spokesperson, said the virtual program is limited to students with a medical history or diagnosed condition that puts them at a higher risk of severe illness from COVID-19. The district is continuing to review the 5,000 applications it received for the program, of which 1,041 students have qualified as of Aug. 19.

On Monday, Fort Bend's school board approved a mask requirement for students and staff. Last week, the Texas Supreme Court had allowed mask mandates put in place by local officials to remain in place while the state challenges them.

Separately, a group of 14 students with disabilities filed a lawsuit last week against Abbott and the state's education commissioner, Mike Morath, asserting the mask mandate ban violates students' rights and excludes them from participating in public education.

"Governor Abbott has been clear that the time for mask mandates is over; now is the time for personal responsibility," said Renae Eze, the governor's press secretary, in an emailed response to ProPublica's questions. "Parents and guardians have the right to decide whether their child will wear a mask or not, just as with any other decision in their child's life."

Eze said that districts in Texas are implementing a variety of safety precautions, from learning pods to enhanced hygiene, and that families of immunocompromised children also have the option of virtual learning, though the enrollment for these programs is limited. Eze did not respond to questions about the impending suit.

"Governor Abbott cares deeply about the health and safety of disabled students, as he does for all Texas students," she said. "Since his accident that left him paralyzed, the Governor has worked throughout his career to protect the rights of all those with disabilities in Texas."

Other states have backtracked on earlier decisions around masks. New Jersey Gov. Phil Murphy, a Democrat, announced in June that there would be no statewide mask mandate for students returning to school in the fall. Instead, the decision would be left up to individual school districts.

Amid rising case numbers, in large part driven by the delta variant, Murphy reversed course in early August, implementing a statewide mask mandate for schools.

"Anyone telling you that we can safely reopen our schools without requiring everyone inside to wear a mask is, quite simply, lying to you," Murphy said in his announcement. "Because we can't."

Last April, the Arkansas State Legislature passed a statewide ban on mask mandates. In August, Gov. Asa Hutchinson, a Republican, asked legislators to amend the law to allow school districts with students under the age of 12 to require masks. He said he signed the April law, in part, because cases were down at the time.

"Everything has changed now," he said. "And yes, in hindsight I wish it had not become the law, but it is the law, and the only chance we have is either to amend it or for the courts to say it has an unconstitutional foundation."

Legislators chose not to change the law, but a judge has temporarily blocked Arkansas from enforcing the ban.

As of Wednesday, 16 states had mandated masks in schools and eight states had banned mask mandates. Other states are leaving the decision to counties or individual school districts.

In Ohio, Gov. Mike DeWine, a Republican, said in July that he did not believe he had the authority to mandate masks in schools. At a press conference last week, he urged schools to implement their own mask requirements, at least for the next few weeks while case numbers are high.

"To all those who are making decisions right now about our schools, if you do not require masks, please, please, please think about this again," he said.

Even in districts that have recently instituted last-minute mask mandates, often defying their states' orders against them, some parents of children with medical needs have lost confidence in their public school systems.

When the pandemic initially shut down schools, Vanessa Perry, whose son Ryan was diagnosed with the rare autoimmune disorder Henoch-Schönlein purpura last year, opted for remote learning. This summer, she hoped that his district, Richland One in Columbia, South Carolina, would institute a mask mandate, so he could return to the classroom.

But in the weeks leading up to the school year, the district made masking optional, in compliance with the state's ban on universal mandates. Two days before school was supposed to start, the Richland County Council defied the state and passed an emergency ordinance mandating masks in all public and private schools that serve children between the ages of 2 and 14.

But it was too late for Perry. She had already enrolled her son in a virtual program for this fall and purchased textbooks and supplies. And with the emergency ordinance's mandate expiring on Oct. 15, she didn't want to risk the possibility that it wouldn't be extended, or that it might be revoked before then.

"At this point, I don't know if I trust things to be handled correctly," she said. "You have always viewed school as a safe place for children. Why aren't we listening to scientists and the professionals?"

Annie Waldman is a reporter at ProPublica covering education.

Do you or someone you know have a pacemaker, defibrillator, implanted prosthetic, or other lifesaving device? Do you work with or in the medical device industry? Help us report.

This article was published on Thursday, August 5, 2021 in ProPublica.

By Neil Bedi, Maryam Jameel and Maya Miller

Hundreds of thousands of people rely on lifesaving medical devices, from pacemakers and defibrillators to implanted prosthetics. The U.S. regulatory system is supposed to protect all of them from unsafe devices and unscrupulous actors.