MDedge Pediatrics

This story was originally published on ProPublica and was co-published with NPR.

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.

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, Calif., 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.

Ms. 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.

Ms. 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 Ms. Yang to a nearby homeless encampment. Angelica wasn’t there, so Ms. 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. Ms. 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: Ms. Yang 26 and Angelica 27. Ms. 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,” Ms. 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.

Ms. 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,” Ms. 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.

Ms. 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. Ms. 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 Dr. 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, Ala., 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 United States 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.”

Ms. Yang waited until the end of the day, then called the clinic to see if Angelica had gone for her shot. She had not. Ms. 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. Ms. 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.

Ms. 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, Ms. 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,” Ms. 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. Ms. 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 Ms. 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 Dr. 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 Ms. 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?” Dr. 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 Mr. 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 Ms. 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, Ms. 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. Ms. 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. Ms. Yang noted that Angelica was wearing a wig; hair loss is a symptom of syphilis.

“Do you remember me?” Ms. Yang asked.

Angelica nodded. She didn’t seem surprised to see Ms. Yang again. (I came along, and Mr. 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...” Mr. 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.

Ms. 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.”

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

“I’ll walk with you,” Ms. Yang offered. Angelica shook her head. “She said she wants to shower first before she goes over there,” Mr. Sevilla said.

Ms. Yang made a face. “She said that to me last time.” Ms. 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.

Ms. Yang was reluctant to let her go but again had no other option. She and Mr. 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 Ms. 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. Dr. Stafford realized that there was no heartbeat. “She could see on my face that something was really wrong,” Dr. Stafford recalled. She had to let the patient know that syphilis had killed her baby. “She was hysterical, just bawling,” Dr. 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, Ms. 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. Ms. 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 Ms. 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, Ms. 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, Ms. 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 Ms. 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 Ms. 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, Ms. 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 health care 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. Dr. 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 Dr. 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, Ms. 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 health care 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.’”

Ms. 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,” Ms. 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 Ms. Yang wasn’t sure she could convince Angelica to walk. Mr. 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 Ms. Yang drove to the clinic. A few minutes later, they pulled up to the parking lot.

Finally, Ms. 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 Ms. 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.

Ms. 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 Ms. Yang negotiated, Mr. Sevilla sat with Angelica in the car, waiting.

Finally, Ms. 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 Mr. 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?” Ms. Yang asked.

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

Ms. 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. Ms. 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. Ms. Yang and Mr. Sevilla spent an hour driving around, talking to residents, hoping to catch Angelica. But she was nowhere to be found.

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

This story was originally published on ProPublica and was co-published with NPR.

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.

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, Calif., 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.

Ms. 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.

Ms. 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 Ms. Yang to a nearby homeless encampment. Angelica wasn’t there, so Ms. 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. Ms. 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: Ms. Yang 26 and Angelica 27. Ms. 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,” Ms. 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.

Ms. 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,” Ms. 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.

Ms. 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. Ms. 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 Dr. 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, Ala., 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 United States 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.”

Ms. Yang waited until the end of the day, then called the clinic to see if Angelica had gone for her shot. She had not. Ms. 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. Ms. 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.

Ms. 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, Ms. 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,” Ms. 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. Ms. 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 Ms. 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 Dr. 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 Ms. 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?” Dr. 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 Mr. 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 Ms. 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, Ms. 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. Ms. 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. Ms. Yang noted that Angelica was wearing a wig; hair loss is a symptom of syphilis.

“Do you remember me?” Ms. Yang asked.

Angelica nodded. She didn’t seem surprised to see Ms. Yang again. (I came along, and Mr. 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...” Mr. 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.

Ms. 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.”

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

“I’ll walk with you,” Ms. Yang offered. Angelica shook her head. “She said she wants to shower first before she goes over there,” Mr. Sevilla said.

Ms. Yang made a face. “She said that to me last time.” Ms. 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.

Ms. Yang was reluctant to let her go but again had no other option. She and Mr. 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 Ms. 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. Dr. Stafford realized that there was no heartbeat. “She could see on my face that something was really wrong,” Dr. Stafford recalled. She had to let the patient know that syphilis had killed her baby. “She was hysterical, just bawling,” Dr. 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, Ms. 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. Ms. 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 Ms. 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, Ms. 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, Ms. 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 Ms. 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 Ms. 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, Ms. 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 health care 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. Dr. 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 Dr. 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, Ms. 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 health care 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.’”

Ms. 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,” Ms. 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 Ms. Yang wasn’t sure she could convince Angelica to walk. Mr. 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 Ms. Yang drove to the clinic. A few minutes later, they pulled up to the parking lot.

Finally, Ms. 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 Ms. 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.

Ms. 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 Ms. Yang negotiated, Mr. Sevilla sat with Angelica in the car, waiting.

Finally, Ms. 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 Mr. 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?” Ms. Yang asked.

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

Ms. 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. Ms. 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. Ms. Yang and Mr. Sevilla spent an hour driving around, talking to residents, hoping to catch Angelica. But she was nowhere to be found.

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

This story was originally published on ProPublica and was co-published with NPR.

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.

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, Calif., 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.

Ms. 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.

Ms. 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 Ms. Yang to a nearby homeless encampment. Angelica wasn’t there, so Ms. 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. Ms. 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: Ms. Yang 26 and Angelica 27. Ms. 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,” Ms. 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.

Ms. 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,” Ms. 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.

Ms. 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. Ms. 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 Dr. 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, Ala., 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 United States 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.”

Ms. Yang waited until the end of the day, then called the clinic to see if Angelica had gone for her shot. She had not. Ms. 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. Ms. 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.

Ms. 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, Ms. 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,” Ms. 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. Ms. 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 Ms. 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 Dr. 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 Ms. 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?” Dr. 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 Mr. 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 Ms. 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, Ms. 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. Ms. 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. Ms. Yang noted that Angelica was wearing a wig; hair loss is a symptom of syphilis.

“Do you remember me?” Ms. Yang asked.

Angelica nodded. She didn’t seem surprised to see Ms. Yang again. (I came along, and Mr. 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...” Mr. 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.

Ms. 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.”

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

“I’ll walk with you,” Ms. Yang offered. Angelica shook her head. “She said she wants to shower first before she goes over there,” Mr. Sevilla said.

Ms. Yang made a face. “She said that to me last time.” Ms. 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.

Ms. Yang was reluctant to let her go but again had no other option. She and Mr. 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 Ms. 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. Dr. Stafford realized that there was no heartbeat. “She could see on my face that something was really wrong,” Dr. Stafford recalled. She had to let the patient know that syphilis had killed her baby. “She was hysterical, just bawling,” Dr. 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, Ms. 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. Ms. 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 Ms. 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, Ms. 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, Ms. 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 Ms. 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 Ms. 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, Ms. 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 health care 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. Dr. 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 Dr. 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, Ms. 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 health care 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.’”

Ms. 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,” Ms. 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 Ms. Yang wasn’t sure she could convince Angelica to walk. Mr. 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 Ms. Yang drove to the clinic. A few minutes later, they pulled up to the parking lot.

Finally, Ms. 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 Ms. 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.

Ms. 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 Ms. Yang negotiated, Mr. Sevilla sat with Angelica in the car, waiting.

Finally, Ms. 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 Mr. 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?” Ms. Yang asked.

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

Ms. 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. Ms. 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. Ms. Yang and Mr. Sevilla spent an hour driving around, talking to residents, hoping to catch Angelica. But she was nowhere to be found.

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

On Nov. 2, the Centers for Disease Control and Prevention endorsed vaccination with the Pfizer/BioNTech COVID-19 vaccine for children aged 5-11 years. What are some best practices for meeting the challenges of immunizing this younger age group?

This news organization spoke to several pediatric experts to get answers.

More than 6 million children and adolescents (up to age 18 years) in the United States have been infected with SARS-CoV-2. Children represent about 17% of all cases, and an estimated 0.1%-2% of infected children end up hospitalized, according to Oct. 28 data from the American Academy of Pediatrics.

Physicians and other health care practitioners are gearing up for what could be an influx of patients. “Pediatricians are standing by to talk with families about the vaccine and to administer the vaccine to children as soon as possible,” Lee Savio Beers, MD, FAAP, president of the AAP, said in a statement.

In this Q&A, this news organization asked for additional advice from Sara “Sally” Goza, MD, a pediatrician in Fayetteville, Georgia, and immediate past president of the AAP; Peter Hotez, MD, PhD, dean of the National School of Tropical Medicine at Baylor College of Medicine and codirector of the Texas Children’s Hospital Center for Vaccine Development, both in Houston; and Danielle M. Zerr, MD, professor and chief of the division of pediatric infectious disease at the University of Washington, Seattle, and medical director of infection prevention at Seattle Children’s Hospital.
 

Q: How are smaller pediatric practices and solo practitioners going to handle the additional vaccinations?

Dr. Goza: It’s a scheduling challenge with this rollout and all the people who want it and want it right now. They’re going to want it this week.

I’ve actually had some children asking their moms: “When can I get it? When can I get it?” It’s been very interesting – they are chomping at the bit.

If I give the vaccine to a patient this week, in 3 weeks the second dose will be right around Thanksgiving. No one in my office is going to want to be here to give the shot on Thanksgiving, and no patient is going to want to come in on Thanksgiving weekend. So I’m trying to delay those parents – saying, let’s do it next week. That way we’re not messing up a holiday.

Children are going to need two doses, and they won’t be fully protected until 2 weeks after their second dose. So they won’t get full protection for Thanksgiving, but they will have full protection for Christmas.

I know there are a lot of pediatricians who have preordered the vaccine. I know in our office they sent us an email ... to let us know our vaccines are being shipped. So I think a lot of pediatricians are going to have the vaccine.
 

Q: How should pediatricians counsel parents who are fearful or hesitant?

Dr. Hotez: It’s important to emphasize the severity of the 2021 summer Delta epidemic in children. We need to get beyond this false narrative that COVID only produces a mild disease in children. It’s caused thousands of pediatric hospitalizations, not to mention long COVID.

Dr. Zerr: It is key to find out what concerns parents have and then focus on answering their specific questions. It is helpful to emphasize the safety and efficacy of the vaccine and to explain the rigorous processes that the vaccine went through to receive Food and Drug Administration approval.
 

Q: How should pediatricians counter any misinformation/disinformation out there about the COVID-19 vaccines?

Dr. Goza: The most important thing is not to discount what they are saying. Don’t say: “That’s crazy” or “That’s not true.” Don’t roll your eyes and say: “Really, you’re going to believe all that?”

Instead, have a conversation with them about why we think that is not true, or why we know that’s not true. We really have to have that relationship and ask: “Well, what are your concerns?” And then really counter (any misinformation) with facts, with science, and based on your experience.
 

Q: Do the data presented to the FDA and the CDC about the safety and effectiveness of the COVID-19 vaccine for 5- to 11-year-olds seem robust to you?

Dr. Zerr: Yes, and data collection will be ongoing.

Dr. Hotez: I’ve only seen what’s publicly available so far, and it seems to support moving forward with emergency use authorization. The only shortfall is the size, roughly 2,200 children, which would not be of sufficient size to detect a rare safety signal.
 

Q: Do previous controversies around pediatric vaccines (for example, the MMR vaccine and autism) give pediatricians some background and experience so they can address any pushback on the COVID-19 vaccines?

Dr. Goza: Pediatricians have been dealing with vaccine hesitancy for a while now, ever since the MMR and autism controversy started. Even before then, there were certain groups of people who didn’t want vaccines.

We’ve really worked hard at helping teach pediatricians how to deal with the misinformation, how to counter it, and how to help parents understand the vaccines are safe and effective – and that they save lives.

That (experience) will help us in some ways. Unfortunately, there is more misinformation out there – there is almost a concerted effort on misinformation. It’s big.

Pediatricians will do everything we can, but we need help countering it. We need the misinformation to quit getting spread on social media. We can talk one on one with patients and families, but if all they are hearing on social media is the misinformation, it’s really hard.
 

Q: Are pediatricians, especially solo practitioners or pediatricians at smaller practices, going to face challenges with multidose vials and not wasting vaccine product?

Dr. Goza: I’m at a small practice. We have 3.5 FTEs (full-time equivalents) of MDs and three FTEs of nurse practitioners. So we’re not that big – about six providers.

You know, it is a challenge. We’re not going to buy the super-duper freezer, and we’re not going to be able to store these vaccines for a long period of time.

So when we order, we need smaller amounts. For the 12- to 18-year-olds, [maximum storage] was 45 days. Now for the 5- to 11-year-olds, we’re going to be able to store the vaccine in the refrigerator for 10 weeks, which gives us more leeway there.

We try to do all of vaccinations on 1 day, so we know how many people are coming in, and we are not going to waste too many doses.

Our Department of Public Health in Georgia has said: “We want these vaccines in the arms of kids, and if you have to waste some doses, don’t worry about it.” But it’s a 10-dose vial. It’s going to be hard for me to open it up for one child. I just don’t like wasting anything like this.

Our main goal is to get this vaccine in to the arms of children whose parents want it.
 

Q: What are some additional sources of information for pediatricians?

Dr. Zerr: There are a lot of great resources on vaccine hesitancy from reputable sources, including these from the CDC and from the National Academies of Sciences, Engineering, and Medicine:

• Building Confidence With OVID-19 Vaccines
• How to Talk With Parents About COVID-19 Vaccination
• Strategies for Building Confidence in the COVID-19 Vaccines
• Communication Strategies for Building Confidence in COVID-19 Vaccines: Addressing Variants and Childhood Vaccinations

A version of this article first appeared on Medscape.com.

On Nov. 2, the Centers for Disease Control and Prevention endorsed vaccination with the Pfizer/BioNTech COVID-19 vaccine for children aged 5-11 years. What are some best practices for meeting the challenges of immunizing this younger age group?

This news organization spoke to several pediatric experts to get answers.

More than 6 million children and adolescents (up to age 18 years) in the United States have been infected with SARS-CoV-2. Children represent about 17% of all cases, and an estimated 0.1%-2% of infected children end up hospitalized, according to Oct. 28 data from the American Academy of Pediatrics.

Physicians and other health care practitioners are gearing up for what could be an influx of patients. “Pediatricians are standing by to talk with families about the vaccine and to administer the vaccine to children as soon as possible,” Lee Savio Beers, MD, FAAP, president of the AAP, said in a statement.

In this Q&A, this news organization asked for additional advice from Sara “Sally” Goza, MD, a pediatrician in Fayetteville, Georgia, and immediate past president of the AAP; Peter Hotez, MD, PhD, dean of the National School of Tropical Medicine at Baylor College of Medicine and codirector of the Texas Children’s Hospital Center for Vaccine Development, both in Houston; and Danielle M. Zerr, MD, professor and chief of the division of pediatric infectious disease at the University of Washington, Seattle, and medical director of infection prevention at Seattle Children’s Hospital.
 

Q: How are smaller pediatric practices and solo practitioners going to handle the additional vaccinations?

Dr. Goza: It’s a scheduling challenge with this rollout and all the people who want it and want it right now. They’re going to want it this week.

I’ve actually had some children asking their moms: “When can I get it? When can I get it?” It’s been very interesting – they are chomping at the bit.

If I give the vaccine to a patient this week, in 3 weeks the second dose will be right around Thanksgiving. No one in my office is going to want to be here to give the shot on Thanksgiving, and no patient is going to want to come in on Thanksgiving weekend. So I’m trying to delay those parents – saying, let’s do it next week. That way we’re not messing up a holiday.

Children are going to need two doses, and they won’t be fully protected until 2 weeks after their second dose. So they won’t get full protection for Thanksgiving, but they will have full protection for Christmas.

I know there are a lot of pediatricians who have preordered the vaccine. I know in our office they sent us an email ... to let us know our vaccines are being shipped. So I think a lot of pediatricians are going to have the vaccine.
 

Q: How should pediatricians counsel parents who are fearful or hesitant?

Dr. Hotez: It’s important to emphasize the severity of the 2021 summer Delta epidemic in children. We need to get beyond this false narrative that COVID only produces a mild disease in children. It’s caused thousands of pediatric hospitalizations, not to mention long COVID.

Dr. Zerr: It is key to find out what concerns parents have and then focus on answering their specific questions. It is helpful to emphasize the safety and efficacy of the vaccine and to explain the rigorous processes that the vaccine went through to receive Food and Drug Administration approval.
 

Q: How should pediatricians counter any misinformation/disinformation out there about the COVID-19 vaccines?

Dr. Goza: The most important thing is not to discount what they are saying. Don’t say: “That’s crazy” or “That’s not true.” Don’t roll your eyes and say: “Really, you’re going to believe all that?”

Instead, have a conversation with them about why we think that is not true, or why we know that’s not true. We really have to have that relationship and ask: “Well, what are your concerns?” And then really counter (any misinformation) with facts, with science, and based on your experience.
 

Q: Do the data presented to the FDA and the CDC about the safety and effectiveness of the COVID-19 vaccine for 5- to 11-year-olds seem robust to you?

Dr. Zerr: Yes, and data collection will be ongoing.

Dr. Hotez: I’ve only seen what’s publicly available so far, and it seems to support moving forward with emergency use authorization. The only shortfall is the size, roughly 2,200 children, which would not be of sufficient size to detect a rare safety signal.
 

Q: Do previous controversies around pediatric vaccines (for example, the MMR vaccine and autism) give pediatricians some background and experience so they can address any pushback on the COVID-19 vaccines?

Dr. Goza: Pediatricians have been dealing with vaccine hesitancy for a while now, ever since the MMR and autism controversy started. Even before then, there were certain groups of people who didn’t want vaccines.

We’ve really worked hard at helping teach pediatricians how to deal with the misinformation, how to counter it, and how to help parents understand the vaccines are safe and effective – and that they save lives.

That (experience) will help us in some ways. Unfortunately, there is more misinformation out there – there is almost a concerted effort on misinformation. It’s big.

Pediatricians will do everything we can, but we need help countering it. We need the misinformation to quit getting spread on social media. We can talk one on one with patients and families, but if all they are hearing on social media is the misinformation, it’s really hard.
 

Q: Are pediatricians, especially solo practitioners or pediatricians at smaller practices, going to face challenges with multidose vials and not wasting vaccine product?

Dr. Goza: I’m at a small practice. We have 3.5 FTEs (full-time equivalents) of MDs and three FTEs of nurse practitioners. So we’re not that big – about six providers.

You know, it is a challenge. We’re not going to buy the super-duper freezer, and we’re not going to be able to store these vaccines for a long period of time.

So when we order, we need smaller amounts. For the 12- to 18-year-olds, [maximum storage] was 45 days. Now for the 5- to 11-year-olds, we’re going to be able to store the vaccine in the refrigerator for 10 weeks, which gives us more leeway there.

We try to do all of vaccinations on 1 day, so we know how many people are coming in, and we are not going to waste too many doses.

Our Department of Public Health in Georgia has said: “We want these vaccines in the arms of kids, and if you have to waste some doses, don’t worry about it.” But it’s a 10-dose vial. It’s going to be hard for me to open it up for one child. I just don’t like wasting anything like this.

Our main goal is to get this vaccine in to the arms of children whose parents want it.
 

Q: What are some additional sources of information for pediatricians?

Dr. Zerr: There are a lot of great resources on vaccine hesitancy from reputable sources, including these from the CDC and from the National Academies of Sciences, Engineering, and Medicine:

• Building Confidence With OVID-19 Vaccines
• How to Talk With Parents About COVID-19 Vaccination
• Strategies for Building Confidence in the COVID-19 Vaccines
• Communication Strategies for Building Confidence in COVID-19 Vaccines: Addressing Variants and Childhood Vaccinations

A version of this article first appeared on Medscape.com.

On Nov. 2, the Centers for Disease Control and Prevention endorsed vaccination with the Pfizer/BioNTech COVID-19 vaccine for children aged 5-11 years. What are some best practices for meeting the challenges of immunizing this younger age group?

This news organization spoke to several pediatric experts to get answers.

More than 6 million children and adolescents (up to age 18 years) in the United States have been infected with SARS-CoV-2. Children represent about 17% of all cases, and an estimated 0.1%-2% of infected children end up hospitalized, according to Oct. 28 data from the American Academy of Pediatrics.

Physicians and other health care practitioners are gearing up for what could be an influx of patients. “Pediatricians are standing by to talk with families about the vaccine and to administer the vaccine to children as soon as possible,” Lee Savio Beers, MD, FAAP, president of the AAP, said in a statement.

In this Q&A, this news organization asked for additional advice from Sara “Sally” Goza, MD, a pediatrician in Fayetteville, Georgia, and immediate past president of the AAP; Peter Hotez, MD, PhD, dean of the National School of Tropical Medicine at Baylor College of Medicine and codirector of the Texas Children’s Hospital Center for Vaccine Development, both in Houston; and Danielle M. Zerr, MD, professor and chief of the division of pediatric infectious disease at the University of Washington, Seattle, and medical director of infection prevention at Seattle Children’s Hospital.
 

Q: How are smaller pediatric practices and solo practitioners going to handle the additional vaccinations?

Dr. Goza: It’s a scheduling challenge with this rollout and all the people who want it and want it right now. They’re going to want it this week.

I’ve actually had some children asking their moms: “When can I get it? When can I get it?” It’s been very interesting – they are chomping at the bit.

If I give the vaccine to a patient this week, in 3 weeks the second dose will be right around Thanksgiving. No one in my office is going to want to be here to give the shot on Thanksgiving, and no patient is going to want to come in on Thanksgiving weekend. So I’m trying to delay those parents – saying, let’s do it next week. That way we’re not messing up a holiday.

Children are going to need two doses, and they won’t be fully protected until 2 weeks after their second dose. So they won’t get full protection for Thanksgiving, but they will have full protection for Christmas.

I know there are a lot of pediatricians who have preordered the vaccine. I know in our office they sent us an email ... to let us know our vaccines are being shipped. So I think a lot of pediatricians are going to have the vaccine.
 

Q: How should pediatricians counsel parents who are fearful or hesitant?

Dr. Hotez: It’s important to emphasize the severity of the 2021 summer Delta epidemic in children. We need to get beyond this false narrative that COVID only produces a mild disease in children. It’s caused thousands of pediatric hospitalizations, not to mention long COVID.

Dr. Zerr: It is key to find out what concerns parents have and then focus on answering their specific questions. It is helpful to emphasize the safety and efficacy of the vaccine and to explain the rigorous processes that the vaccine went through to receive Food and Drug Administration approval.
 

Q: How should pediatricians counter any misinformation/disinformation out there about the COVID-19 vaccines?

Dr. Goza: The most important thing is not to discount what they are saying. Don’t say: “That’s crazy” or “That’s not true.” Don’t roll your eyes and say: “Really, you’re going to believe all that?”

Instead, have a conversation with them about why we think that is not true, or why we know that’s not true. We really have to have that relationship and ask: “Well, what are your concerns?” And then really counter (any misinformation) with facts, with science, and based on your experience.
 

Q: Do the data presented to the FDA and the CDC about the safety and effectiveness of the COVID-19 vaccine for 5- to 11-year-olds seem robust to you?

Dr. Zerr: Yes, and data collection will be ongoing.

Dr. Hotez: I’ve only seen what’s publicly available so far, and it seems to support moving forward with emergency use authorization. The only shortfall is the size, roughly 2,200 children, which would not be of sufficient size to detect a rare safety signal.
 

Q: Do previous controversies around pediatric vaccines (for example, the MMR vaccine and autism) give pediatricians some background and experience so they can address any pushback on the COVID-19 vaccines?

Dr. Goza: Pediatricians have been dealing with vaccine hesitancy for a while now, ever since the MMR and autism controversy started. Even before then, there were certain groups of people who didn’t want vaccines.

We’ve really worked hard at helping teach pediatricians how to deal with the misinformation, how to counter it, and how to help parents understand the vaccines are safe and effective – and that they save lives.

That (experience) will help us in some ways. Unfortunately, there is more misinformation out there – there is almost a concerted effort on misinformation. It’s big.

Pediatricians will do everything we can, but we need help countering it. We need the misinformation to quit getting spread on social media. We can talk one on one with patients and families, but if all they are hearing on social media is the misinformation, it’s really hard.
 

Q: Are pediatricians, especially solo practitioners or pediatricians at smaller practices, going to face challenges with multidose vials and not wasting vaccine product?

Dr. Goza: I’m at a small practice. We have 3.5 FTEs (full-time equivalents) of MDs and three FTEs of nurse practitioners. So we’re not that big – about six providers.

You know, it is a challenge. We’re not going to buy the super-duper freezer, and we’re not going to be able to store these vaccines for a long period of time.

So when we order, we need smaller amounts. For the 12- to 18-year-olds, [maximum storage] was 45 days. Now for the 5- to 11-year-olds, we’re going to be able to store the vaccine in the refrigerator for 10 weeks, which gives us more leeway there.

We try to do all of vaccinations on 1 day, so we know how many people are coming in, and we are not going to waste too many doses.

Our Department of Public Health in Georgia has said: “We want these vaccines in the arms of kids, and if you have to waste some doses, don’t worry about it.” But it’s a 10-dose vial. It’s going to be hard for me to open it up for one child. I just don’t like wasting anything like this.

Our main goal is to get this vaccine in to the arms of children whose parents want it.
 

Q: What are some additional sources of information for pediatricians?

Dr. Zerr: There are a lot of great resources on vaccine hesitancy from reputable sources, including these from the CDC and from the National Academies of Sciences, Engineering, and Medicine:

• Building Confidence With OVID-19 Vaccines
• How to Talk With Parents About COVID-19 Vaccination
• Strategies for Building Confidence in the COVID-19 Vaccines
• Communication Strategies for Building Confidence in COVID-19 Vaccines: Addressing Variants and Childhood Vaccinations

A version of this article first appeared on Medscape.com.

Adding anti-inflammatory corticosteroids to antibiotics for certain pediatric throat and ocular infections may have some benefit, according to results from two recent database studies, but their benefit remains unclear.

Using steroids in this setting is a practice many pediatricians consider, although no clear guidance exists.

Drawing on data from a registry of 51 free-standing children’s hospitals in the Pediatric Health Information System (PHIS), and published online in Pediatrics, the analyses looked, respectively, at retro- and parapharyngeal abscesses (RPAs/PPAs) and acute orbital cellulitis.
 

Throat abscesses

In the first study, pediatrician Pratichi K. Goenka, MD, of Cohen Children’s Medical Center–Northwell Health and an assistant professor at Hofstra University, both in New Hyde Park, N.Y., and colleagues reported on the effect of systemic corticosteroids on several outcomes in RPAs/PPAs in 2,259 well-matched patients. The patients, aged 2 months to 8 years, were treated at 46 hospitals during the period from January 2016 to December 2019.

The data revealed that the 582 (25.8%) who received steroids had a significantly lower rate of surgical drainage, the study’s primary endpoint (odds ratio, 0.28; 95% confidence interval, 0.22-0.36). There was no difference, however, in length of hospital stay (rate ratio, 0.97; 95% CI, 0.92-1.02).

Those in the steroid group also had lower overall hospital costs and were less likely to be given opioid medications for pain. They were, however, more likely to undergo repeat CT imaging and also had a higher 7-day ED revisit rate but no increase in readmission 30 days after discharge: 4% versus 3% in the nonsteroid group (P = .29).

“As hospitalists, we share the care of young children with RPAs and PPAs with our otolaryngology colleagues. The primary therapy is antibiotics but there was no clear guidance on the next step, and the current literature had no answers as to how systemic corticosteroids might impact the care of these children,” Dr. Goenka said in an interview. “So we wanted to leverage the PHIS data to better understand the association with the need for surgery and length of stay. Surgery is painful and often involves IV administration of opioid painkillers. It’s something we may be able to avoid if we can optimize medical treatment.”

Pending results from randomized trials, what immediate impact could these registry findings have? “We hope that physicians will think about the best initial medical treatment plan for these children,” Dr. Goenka said. ”Given these data, I would be more likely to incorporate steroids early on in medical treatment.”

She emphasized, however, that before routine adoption prospective studies are needed to clearly identify which patients will have a strong benefit and which will not benefit. “That is the nuanced discussion that will happen with more prospective work.”

Dr. Goenka and associates explained that the rising incidence of RPAs and PPAs over the past 20 years has been attributed to more cases of tonsillitis because of a shift away from tonsillectomies, as well as the changing epidemiology of methicillin-resistant Staphylococcus aureus.

In an accompanying editorial, Ellen R. Wald, MD, and Jens C. Eickhoff, PhD, of the University of Wisconsin–Madison, stated that the use of corticosteroids in bacterial meningitis is often cited as an example of the benefits of steroids in infection. “The specific rationale for use of corticosteroids is [their] anti-inflammatory effects, which may result in decreases of swelling and/ or edema to facilitate drainage, perfusion, reduction in pain, and healing.”

They cautioned, however, that the pharmacologic effects of steroids are myriad and complicated, and include potential masking of the clinical course of disease, thereby delaying appropriate therapy for unrecognized deterioration, as well potential immunosuppression.
 

Acute orbital cellulitis

In the second retrospective analysis, a group led by pediatrician Maria Anna Leszczynska, MD, of Johns Hopkins All Children’s Hospital in Baltimore, analyzed a retrospective PHIS cohort of 5,645 children younger than 18 years with a primary diagnosis of orbital cellulitis treated at 51 hospitals from January 2007 to December 2018.

Of these, 1,347 (24%) received steroids, but, contrary to earlier reports, the data showed no reduction in length of stay associated with these drugs after adjustment for age, meningitis, abscess, or vision issues (e_beta, 1.01; 95% CI, 0.97-1.06). Corticosteroid exposure was, however, associated with operative episodes after 2 days’ hospitalization (OR, 2.05; 95% CI, 1.29-3.27) and 30-day readmission (OR, 2.40; 95% CI, 1.52-3.78).

“Among children hospitalized for orbital cellulitis, we did not observe the reduction in LOS [length of stay] for patients prescribed systemic corticosteroids as described previously in the literature,” the authors wrote.

In terms of surgical procedures, 52.0% of corticosteroid recipients versus 14.0% of nonrecipients underwent surgery (P < .001), and more were hospitalized in the pediatric ICU (4.4% vs 2.6%; P < .001).

According to the editorialists: “Both observations suggest that children who received steroids may have been a sicker group of patients.”

Dr. Wald and Dr. Eickhoff pointed out that the effect of steroids is ultimately unclear because of the retrospective study’s inherent potential for bias because of unobserved confounders. Were steroids prescribed more often when children were perceived to be sicker with more severe disease, or did these medications cause worse outcomes?

The authors agreed that the study could not determine causality. “Although we used all available markers of disease severity, there does not exist a validated disease severity clinical score for pediatric orbital cellulitis,” they wrote.

According to Ricardo A. Quinonez, MD, an associate professor of pediatrics and division and service chief of pediatric hospital medicine at Baylor College of Medicine and Texas Children’s Hospital, both in Houston, “orbital cellulitis is a not very common thing in children so we don’t treat many patients with this. But having said that, there is usually some debate among providers about whether to use steroids.”

Some centers use them routinely for central nervous system and eye infections or extensions of sinusitis, he said, but there is variability in the prescribing of corticosteroids. “There’s ongoing discussion as to whether they‘re as helpful in orbital cellulitis as they are in similar conditions,” Dr. Quinonez said in an interview. “At our institution we don’t typically prescribe them – not never but not routinely. Children who are sicker tend to get steroids, as they do in other conditions.”

In the context of PPA as in the first study, he added, “I think the evidence favoring the use of steroids in infections that affect the airway is stronger, and their use is definitely more prevalent in those instances.”

While both PHIS analyses suggested some benefit from steroids, he continued, some children may not benefit and there may be harms. “The evidence is still mostly retrospective and observational with no multicenter randomized controlled data. Without those data the evidence is difficult to interpret and subject to all the biases that observational and retrospective data is subject to and the current evidence should not lead physicians to change their practice until controlled, randomized evidence is available.”

The editorialists concurred with the study authors and Dr. Quinonez that large, controlled, prospective clinical trials are needed to ascertain the effect of steroids and to standardize the approach to diagnosis and management. “Use of administrative databases are not optimal to answer questions related to outcome,” they wrote.

The study by Dr. Goenka and associates received no external funding; the study by Dr. Leszczynska and associates also received no external funding. None of the authors declared potential competing interests. Dr. Quinonez had no competing interests to declare. Dr. Wald and Dr. Eickhoff disclosed no competing interests with regard to their editorial.

Adding anti-inflammatory corticosteroids to antibiotics for certain pediatric throat and ocular infections may have some benefit, according to results from two recent database studies, but their benefit remains unclear.

Using steroids in this setting is a practice many pediatricians consider, although no clear guidance exists.

Drawing on data from a registry of 51 free-standing children’s hospitals in the Pediatric Health Information System (PHIS), and published online in Pediatrics, the analyses looked, respectively, at retro- and parapharyngeal abscesses (RPAs/PPAs) and acute orbital cellulitis.
 

Throat abscesses

In the first study, pediatrician Pratichi K. Goenka, MD, of Cohen Children’s Medical Center–Northwell Health and an assistant professor at Hofstra University, both in New Hyde Park, N.Y., and colleagues reported on the effect of systemic corticosteroids on several outcomes in RPAs/PPAs in 2,259 well-matched patients. The patients, aged 2 months to 8 years, were treated at 46 hospitals during the period from January 2016 to December 2019.

The data revealed that the 582 (25.8%) who received steroids had a significantly lower rate of surgical drainage, the study’s primary endpoint (odds ratio, 0.28; 95% confidence interval, 0.22-0.36). There was no difference, however, in length of hospital stay (rate ratio, 0.97; 95% CI, 0.92-1.02).

Those in the steroid group also had lower overall hospital costs and were less likely to be given opioid medications for pain. They were, however, more likely to undergo repeat CT imaging and also had a higher 7-day ED revisit rate but no increase in readmission 30 days after discharge: 4% versus 3% in the nonsteroid group (P = .29).

“As hospitalists, we share the care of young children with RPAs and PPAs with our otolaryngology colleagues. The primary therapy is antibiotics but there was no clear guidance on the next step, and the current literature had no answers as to how systemic corticosteroids might impact the care of these children,” Dr. Goenka said in an interview. “So we wanted to leverage the PHIS data to better understand the association with the need for surgery and length of stay. Surgery is painful and often involves IV administration of opioid painkillers. It’s something we may be able to avoid if we can optimize medical treatment.”

Pending results from randomized trials, what immediate impact could these registry findings have? “We hope that physicians will think about the best initial medical treatment plan for these children,” Dr. Goenka said. ”Given these data, I would be more likely to incorporate steroids early on in medical treatment.”

She emphasized, however, that before routine adoption prospective studies are needed to clearly identify which patients will have a strong benefit and which will not benefit. “That is the nuanced discussion that will happen with more prospective work.”

Dr. Goenka and associates explained that the rising incidence of RPAs and PPAs over the past 20 years has been attributed to more cases of tonsillitis because of a shift away from tonsillectomies, as well as the changing epidemiology of methicillin-resistant Staphylococcus aureus.

In an accompanying editorial, Ellen R. Wald, MD, and Jens C. Eickhoff, PhD, of the University of Wisconsin–Madison, stated that the use of corticosteroids in bacterial meningitis is often cited as an example of the benefits of steroids in infection. “The specific rationale for use of corticosteroids is [their] anti-inflammatory effects, which may result in decreases of swelling and/ or edema to facilitate drainage, perfusion, reduction in pain, and healing.”

They cautioned, however, that the pharmacologic effects of steroids are myriad and complicated, and include potential masking of the clinical course of disease, thereby delaying appropriate therapy for unrecognized deterioration, as well potential immunosuppression.
 

Acute orbital cellulitis

In the second retrospective analysis, a group led by pediatrician Maria Anna Leszczynska, MD, of Johns Hopkins All Children’s Hospital in Baltimore, analyzed a retrospective PHIS cohort of 5,645 children younger than 18 years with a primary diagnosis of orbital cellulitis treated at 51 hospitals from January 2007 to December 2018.

Of these, 1,347 (24%) received steroids, but, contrary to earlier reports, the data showed no reduction in length of stay associated with these drugs after adjustment for age, meningitis, abscess, or vision issues (e_beta, 1.01; 95% CI, 0.97-1.06). Corticosteroid exposure was, however, associated with operative episodes after 2 days’ hospitalization (OR, 2.05; 95% CI, 1.29-3.27) and 30-day readmission (OR, 2.40; 95% CI, 1.52-3.78).

“Among children hospitalized for orbital cellulitis, we did not observe the reduction in LOS [length of stay] for patients prescribed systemic corticosteroids as described previously in the literature,” the authors wrote.

In terms of surgical procedures, 52.0% of corticosteroid recipients versus 14.0% of nonrecipients underwent surgery (P < .001), and more were hospitalized in the pediatric ICU (4.4% vs 2.6%; P < .001).

According to the editorialists: “Both observations suggest that children who received steroids may have been a sicker group of patients.”

Dr. Wald and Dr. Eickhoff pointed out that the effect of steroids is ultimately unclear because of the retrospective study’s inherent potential for bias because of unobserved confounders. Were steroids prescribed more often when children were perceived to be sicker with more severe disease, or did these medications cause worse outcomes?

The authors agreed that the study could not determine causality. “Although we used all available markers of disease severity, there does not exist a validated disease severity clinical score for pediatric orbital cellulitis,” they wrote.

According to Ricardo A. Quinonez, MD, an associate professor of pediatrics and division and service chief of pediatric hospital medicine at Baylor College of Medicine and Texas Children’s Hospital, both in Houston, “orbital cellulitis is a not very common thing in children so we don’t treat many patients with this. But having said that, there is usually some debate among providers about whether to use steroids.”

Some centers use them routinely for central nervous system and eye infections or extensions of sinusitis, he said, but there is variability in the prescribing of corticosteroids. “There’s ongoing discussion as to whether they‘re as helpful in orbital cellulitis as they are in similar conditions,” Dr. Quinonez said in an interview. “At our institution we don’t typically prescribe them – not never but not routinely. Children who are sicker tend to get steroids, as they do in other conditions.”

In the context of PPA as in the first study, he added, “I think the evidence favoring the use of steroids in infections that affect the airway is stronger, and their use is definitely more prevalent in those instances.”

While both PHIS analyses suggested some benefit from steroids, he continued, some children may not benefit and there may be harms. “The evidence is still mostly retrospective and observational with no multicenter randomized controlled data. Without those data the evidence is difficult to interpret and subject to all the biases that observational and retrospective data is subject to and the current evidence should not lead physicians to change their practice until controlled, randomized evidence is available.”

The editorialists concurred with the study authors and Dr. Quinonez that large, controlled, prospective clinical trials are needed to ascertain the effect of steroids and to standardize the approach to diagnosis and management. “Use of administrative databases are not optimal to answer questions related to outcome,” they wrote.

The study by Dr. Goenka and associates received no external funding; the study by Dr. Leszczynska and associates also received no external funding. None of the authors declared potential competing interests. Dr. Quinonez had no competing interests to declare. Dr. Wald and Dr. Eickhoff disclosed no competing interests with regard to their editorial.

Adding anti-inflammatory corticosteroids to antibiotics for certain pediatric throat and ocular infections may have some benefit, according to results from two recent database studies, but their benefit remains unclear.

Using steroids in this setting is a practice many pediatricians consider, although no clear guidance exists.

Drawing on data from a registry of 51 free-standing children’s hospitals in the Pediatric Health Information System (PHIS), and published online in Pediatrics, the analyses looked, respectively, at retro- and parapharyngeal abscesses (RPAs/PPAs) and acute orbital cellulitis.
 

Throat abscesses

In the first study, pediatrician Pratichi K. Goenka, MD, of Cohen Children’s Medical Center–Northwell Health and an assistant professor at Hofstra University, both in New Hyde Park, N.Y., and colleagues reported on the effect of systemic corticosteroids on several outcomes in RPAs/PPAs in 2,259 well-matched patients. The patients, aged 2 months to 8 years, were treated at 46 hospitals during the period from January 2016 to December 2019.

The data revealed that the 582 (25.8%) who received steroids had a significantly lower rate of surgical drainage, the study’s primary endpoint (odds ratio, 0.28; 95% confidence interval, 0.22-0.36). There was no difference, however, in length of hospital stay (rate ratio, 0.97; 95% CI, 0.92-1.02).

Those in the steroid group also had lower overall hospital costs and were less likely to be given opioid medications for pain. They were, however, more likely to undergo repeat CT imaging and also had a higher 7-day ED revisit rate but no increase in readmission 30 days after discharge: 4% versus 3% in the nonsteroid group (P = .29).

“As hospitalists, we share the care of young children with RPAs and PPAs with our otolaryngology colleagues. The primary therapy is antibiotics but there was no clear guidance on the next step, and the current literature had no answers as to how systemic corticosteroids might impact the care of these children,” Dr. Goenka said in an interview. “So we wanted to leverage the PHIS data to better understand the association with the need for surgery and length of stay. Surgery is painful and often involves IV administration of opioid painkillers. It’s something we may be able to avoid if we can optimize medical treatment.”

Pending results from randomized trials, what immediate impact could these registry findings have? “We hope that physicians will think about the best initial medical treatment plan for these children,” Dr. Goenka said. ”Given these data, I would be more likely to incorporate steroids early on in medical treatment.”

She emphasized, however, that before routine adoption prospective studies are needed to clearly identify which patients will have a strong benefit and which will not benefit. “That is the nuanced discussion that will happen with more prospective work.”

Dr. Goenka and associates explained that the rising incidence of RPAs and PPAs over the past 20 years has been attributed to more cases of tonsillitis because of a shift away from tonsillectomies, as well as the changing epidemiology of methicillin-resistant Staphylococcus aureus.

In an accompanying editorial, Ellen R. Wald, MD, and Jens C. Eickhoff, PhD, of the University of Wisconsin–Madison, stated that the use of corticosteroids in bacterial meningitis is often cited as an example of the benefits of steroids in infection. “The specific rationale for use of corticosteroids is [their] anti-inflammatory effects, which may result in decreases of swelling and/ or edema to facilitate drainage, perfusion, reduction in pain, and healing.”

They cautioned, however, that the pharmacologic effects of steroids are myriad and complicated, and include potential masking of the clinical course of disease, thereby delaying appropriate therapy for unrecognized deterioration, as well potential immunosuppression.
 

Acute orbital cellulitis

In the second retrospective analysis, a group led by pediatrician Maria Anna Leszczynska, MD, of Johns Hopkins All Children’s Hospital in Baltimore, analyzed a retrospective PHIS cohort of 5,645 children younger than 18 years with a primary diagnosis of orbital cellulitis treated at 51 hospitals from January 2007 to December 2018.

Of these, 1,347 (24%) received steroids, but, contrary to earlier reports, the data showed no reduction in length of stay associated with these drugs after adjustment for age, meningitis, abscess, or vision issues (e_beta, 1.01; 95% CI, 0.97-1.06). Corticosteroid exposure was, however, associated with operative episodes after 2 days’ hospitalization (OR, 2.05; 95% CI, 1.29-3.27) and 30-day readmission (OR, 2.40; 95% CI, 1.52-3.78).

“Among children hospitalized for orbital cellulitis, we did not observe the reduction in LOS [length of stay] for patients prescribed systemic corticosteroids as described previously in the literature,” the authors wrote.

In terms of surgical procedures, 52.0% of corticosteroid recipients versus 14.0% of nonrecipients underwent surgery (P < .001), and more were hospitalized in the pediatric ICU (4.4% vs 2.6%; P < .001).

According to the editorialists: “Both observations suggest that children who received steroids may have been a sicker group of patients.”

Dr. Wald and Dr. Eickhoff pointed out that the effect of steroids is ultimately unclear because of the retrospective study’s inherent potential for bias because of unobserved confounders. Were steroids prescribed more often when children were perceived to be sicker with more severe disease, or did these medications cause worse outcomes?

The authors agreed that the study could not determine causality. “Although we used all available markers of disease severity, there does not exist a validated disease severity clinical score for pediatric orbital cellulitis,” they wrote.

According to Ricardo A. Quinonez, MD, an associate professor of pediatrics and division and service chief of pediatric hospital medicine at Baylor College of Medicine and Texas Children’s Hospital, both in Houston, “orbital cellulitis is a not very common thing in children so we don’t treat many patients with this. But having said that, there is usually some debate among providers about whether to use steroids.”

Some centers use them routinely for central nervous system and eye infections or extensions of sinusitis, he said, but there is variability in the prescribing of corticosteroids. “There’s ongoing discussion as to whether they‘re as helpful in orbital cellulitis as they are in similar conditions,” Dr. Quinonez said in an interview. “At our institution we don’t typically prescribe them – not never but not routinely. Children who are sicker tend to get steroids, as they do in other conditions.”

In the context of PPA as in the first study, he added, “I think the evidence favoring the use of steroids in infections that affect the airway is stronger, and their use is definitely more prevalent in those instances.”

While both PHIS analyses suggested some benefit from steroids, he continued, some children may not benefit and there may be harms. “The evidence is still mostly retrospective and observational with no multicenter randomized controlled data. Without those data the evidence is difficult to interpret and subject to all the biases that observational and retrospective data is subject to and the current evidence should not lead physicians to change their practice until controlled, randomized evidence is available.”

The editorialists concurred with the study authors and Dr. Quinonez that large, controlled, prospective clinical trials are needed to ascertain the effect of steroids and to standardize the approach to diagnosis and management. “Use of administrative databases are not optimal to answer questions related to outcome,” they wrote.

The study by Dr. Goenka and associates received no external funding; the study by Dr. Leszczynska and associates also received no external funding. None of the authors declared potential competing interests. Dr. Quinonez had no competing interests to declare. Dr. Wald and Dr. Eickhoff disclosed no competing interests with regard to their editorial.

My 50th medical school reunion has come and gone. This milestone offered me another opportunity to look back over the last 5 decades of pediatrics that I have watched pass under the bridge. Triggered by the discovery of two recently published studies, this particular view back over my shoulder induced a wave of sadness, anger, and frustration that I have had trouble shaking.

The first study demonstrated a strong positive effect of exercise on academic achievement, the other found that children who were more physically active have weathered the pandemic with fewer mental health problems.

These studies are just two pieces of a growing body of evidence that our sedentary lifestyles are shortening our lives and launching our children into adulthood burdened with a raft of health risks they could possibly have avoided by being more physically active. Encountering these two papers just as the alumni office was inviting me to engage in an orgy of retrospection and introspection made me consider how little I and others in my profession have done to substantially address this scourge on our young people.

Yes, I have tried to encourage my patients to be less sedentary and more active. Yes, I have tried to set a very visible example by bicycling and walking around town. Yes, I have coached youth sports teams. All of my children and grandchildren are leading active lives and appear to be reaping the benefits. But in the grander scheme of things I feel that neither I nor the American Academy of Pediatrics has made a difference.

In March of 2020 the AAP published a clinical report that lists the numerous positive associations between activity and health that includes a comprehensive collection of suggestions for providers on how we might assess the problem of inactivity and then play a role in addressing it with our patients and our communities. Unfortunately, the message’s importance was lost in the glut of pandemic news.

While the AAP’s report should have been published many decades ago, I doubt the delay lessened its impact significantly because the report is primarily a compendium of recommendations that in the long run will be seen as just another example of us believers preaching to the choir.

Making lifestyle changes on the order of magnitude necessary to convert an increasingly sedentary population into one that unconsciously becomes physically active requires more than recommendations. It is only natural that folks have trouble saying “No.”

No to the entertainment of electronic devices. No to the comforts of all-weather enclosed transportation. No to hours on the couch. Overcoming the inertia built into our society is going to require more than encouragement, recommendations, and professional sports–sponsored presidential initiatives.

Mandate has become a politically charged dirty word. But our current experience with the COVID-19 vaccines should help us realize that there is a significant segment of the population that doesn’t like being told what to do even if the outcome is in their best interest. Education and rewards have fallen short, but the evidence is mounting that mandates can work.

There was a time when physical activity was built into every child’s school day. For a variety of bad reasons, vigorous physical education classes and once- or twice-daily outdoor recesses have disappeared from the educational landscape. It is time to return to them in a robust form. Unfortunately, because activity isn’t happening at home it will take a government mandate.

There will be pushback. Even from some educators whose observations should have shown them the critical role of physical activity in health and academic success. We must move the distraction of the phenomenon once known simply as hyperactivity to the back burner and tackle the real epidemic of hypoactivity that is destroying our children.
 

Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Other than a Littman stethoscope he accepted as a first-year medical student in 1966, Dr. Wilkoff reports having nothing to disclose. Email him at [email protected].

My 50th medical school reunion has come and gone. This milestone offered me another opportunity to look back over the last 5 decades of pediatrics that I have watched pass under the bridge. Triggered by the discovery of two recently published studies, this particular view back over my shoulder induced a wave of sadness, anger, and frustration that I have had trouble shaking.

The first study demonstrated a strong positive effect of exercise on academic achievement, the other found that children who were more physically active have weathered the pandemic with fewer mental health problems.

These studies are just two pieces of a growing body of evidence that our sedentary lifestyles are shortening our lives and launching our children into adulthood burdened with a raft of health risks they could possibly have avoided by being more physically active. Encountering these two papers just as the alumni office was inviting me to engage in an orgy of retrospection and introspection made me consider how little I and others in my profession have done to substantially address this scourge on our young people.

Yes, I have tried to encourage my patients to be less sedentary and more active. Yes, I have tried to set a very visible example by bicycling and walking around town. Yes, I have coached youth sports teams. All of my children and grandchildren are leading active lives and appear to be reaping the benefits. But in the grander scheme of things I feel that neither I nor the American Academy of Pediatrics has made a difference.

In March of 2020 the AAP published a clinical report that lists the numerous positive associations between activity and health that includes a comprehensive collection of suggestions for providers on how we might assess the problem of inactivity and then play a role in addressing it with our patients and our communities. Unfortunately, the message’s importance was lost in the glut of pandemic news.

While the AAP’s report should have been published many decades ago, I doubt the delay lessened its impact significantly because the report is primarily a compendium of recommendations that in the long run will be seen as just another example of us believers preaching to the choir.

Making lifestyle changes on the order of magnitude necessary to convert an increasingly sedentary population into one that unconsciously becomes physically active requires more than recommendations. It is only natural that folks have trouble saying “No.”

No to the entertainment of electronic devices. No to the comforts of all-weather enclosed transportation. No to hours on the couch. Overcoming the inertia built into our society is going to require more than encouragement, recommendations, and professional sports–sponsored presidential initiatives.

Mandate has become a politically charged dirty word. But our current experience with the COVID-19 vaccines should help us realize that there is a significant segment of the population that doesn’t like being told what to do even if the outcome is in their best interest. Education and rewards have fallen short, but the evidence is mounting that mandates can work.

There was a time when physical activity was built into every child’s school day. For a variety of bad reasons, vigorous physical education classes and once- or twice-daily outdoor recesses have disappeared from the educational landscape. It is time to return to them in a robust form. Unfortunately, because activity isn’t happening at home it will take a government mandate.

There will be pushback. Even from some educators whose observations should have shown them the critical role of physical activity in health and academic success. We must move the distraction of the phenomenon once known simply as hyperactivity to the back burner and tackle the real epidemic of hypoactivity that is destroying our children.
 

Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Other than a Littman stethoscope he accepted as a first-year medical student in 1966, Dr. Wilkoff reports having nothing to disclose. Email him at [email protected].

My 50th medical school reunion has come and gone. This milestone offered me another opportunity to look back over the last 5 decades of pediatrics that I have watched pass under the bridge. Triggered by the discovery of two recently published studies, this particular view back over my shoulder induced a wave of sadness, anger, and frustration that I have had trouble shaking.

The first study demonstrated a strong positive effect of exercise on academic achievement, the other found that children who were more physically active have weathered the pandemic with fewer mental health problems.

These studies are just two pieces of a growing body of evidence that our sedentary lifestyles are shortening our lives and launching our children into adulthood burdened with a raft of health risks they could possibly have avoided by being more physically active. Encountering these two papers just as the alumni office was inviting me to engage in an orgy of retrospection and introspection made me consider how little I and others in my profession have done to substantially address this scourge on our young people.

Yes, I have tried to encourage my patients to be less sedentary and more active. Yes, I have tried to set a very visible example by bicycling and walking around town. Yes, I have coached youth sports teams. All of my children and grandchildren are leading active lives and appear to be reaping the benefits. But in the grander scheme of things I feel that neither I nor the American Academy of Pediatrics has made a difference.

In March of 2020 the AAP published a clinical report that lists the numerous positive associations between activity and health that includes a comprehensive collection of suggestions for providers on how we might assess the problem of inactivity and then play a role in addressing it with our patients and our communities. Unfortunately, the message’s importance was lost in the glut of pandemic news.

While the AAP’s report should have been published many decades ago, I doubt the delay lessened its impact significantly because the report is primarily a compendium of recommendations that in the long run will be seen as just another example of us believers preaching to the choir.

Making lifestyle changes on the order of magnitude necessary to convert an increasingly sedentary population into one that unconsciously becomes physically active requires more than recommendations. It is only natural that folks have trouble saying “No.”

No to the entertainment of electronic devices. No to the comforts of all-weather enclosed transportation. No to hours on the couch. Overcoming the inertia built into our society is going to require more than encouragement, recommendations, and professional sports–sponsored presidential initiatives.

Mandate has become a politically charged dirty word. But our current experience with the COVID-19 vaccines should help us realize that there is a significant segment of the population that doesn’t like being told what to do even if the outcome is in their best interest. Education and rewards have fallen short, but the evidence is mounting that mandates can work.

There was a time when physical activity was built into every child’s school day. For a variety of bad reasons, vigorous physical education classes and once- or twice-daily outdoor recesses have disappeared from the educational landscape. It is time to return to them in a robust form. Unfortunately, because activity isn’t happening at home it will take a government mandate.

There will be pushback. Even from some educators whose observations should have shown them the critical role of physical activity in health and academic success. We must move the distraction of the phenomenon once known simply as hyperactivity to the back burner and tackle the real epidemic of hypoactivity that is destroying our children.
 

Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Other than a Littman stethoscope he accepted as a first-year medical student in 1966, Dr. Wilkoff reports having nothing to disclose. Email him at [email protected].

Centers for Disease Control and Prevention (CDC) Director Rochelle Walensky, MD, has endorsed a two-dose regimen of Pfizer’s lower-dose mRNA vaccine for children ages 5 through 11 years-old – meaning the shots are now available for immediate use.

The Nov. 2 decision came mere hours after experts that advise the CDC on vaccinations strongly recommended the vaccine for this age group.

“Together, with science leading the charge, we have taken another important step forward in our nation’s fight against the virus that causes COVID-19. We know millions of parents are eager to get their children vaccinated and with this decision, we now have recommended that about 28 million children receive a COVID-19 vaccine. As a mom, I encourage parents with questions to talk to their pediatrician, school nurse, or local pharmacist to learn more about the vaccine and the importance of getting their children vaccinated,” Dr. Walensky said in a prepared statement.

President Joe Biden applauded Dr. Walensky’s endorsement: “Today, we have reached a turning point in our battle against COVID-19: authorization of a safe, effective vaccine for children age 5 to 11. It will allow parents to end months of anxious worrying about their kids, and reduce the extent to which children spread the virus to others. It is a major step forward for our nation in our fight to defeat the virus,” he said in a statement.

The 14 members of the Advisory Committee on Immunization Practices (ACIP) voted unanimously earlier in the day to recommend the vaccine for kids.

“I feel like I have a responsibility to make this vaccine available to children and their parents,” said committee member Beth Bell, MD, MPH, a clinical professor at the University of Washington in Seattle. Bell noted that all evidence the committee had reviewed pointed to a vaccine that was safe and effective for younger children.

“If I had a grandchild, I would certainly get that grandchild vaccinated as soon as possible,” she said.

Their recommendations follow the U.S. Food and Drug Administration’s emergency authorization of Pfizer-BioNTech’s vaccine for this same age group last week.

“I’m voting for this because I think it could have a huge positive impact on [kids’] health and their social and emotional wellbeing,” said Grace Lee, MD, a professor of pediatrics at Stanford University School of Medicine, who chairs the CDC’s ACIP.

She noted that, though masks are available to reduce the risk for kids, they aren’t perfect and transmission still occurs.

“Vaccines are really the only consistent and reliable way to provide that protection,” Lee said.

The vaccine for children is two doses given 3 weeks apart. Each dose is 10 micrograms, which is one-third of the dose used in adults and teens.

To avoid confusion, the smaller dose for kids will come in bottles with orange labels and orange tops. The vaccine for adults is packaged in purple.

The CDC also addressed the question of kids who are close to age 12 when they get their first dose.

In general, pediatricians allow for a 4-day grace period around birthdays to determine which dose is needed. That will be the same with the COVID-19 vaccine.

For kids who are 11 when they start the series, they should get another 10-microgram dose after they turn 12 a few weeks later.

COVID-19 cases in this age group have climbed sharply over the summer and into the fall as schools have fully reopened, sometimes without the benefit of masks.

In the first week of October, roughly 10% of all COVID-19 cases recorded in the United States were among children ages 5 through 11. Since the start of pandemic, about 1.9 million children in this age group have been infected, though that’s almost certainly an undercount. More than 8,300 have been hospitalized, and 94 children have died.

Children of color have been disproportionately impacted. More than two-thirds of hospitalized children have been black or Hispanic.

Weighing benefits and risks

In clinical trials that included more than 4,600 children, the most common adverse events were pain and swelling at the injection site. They could also have side effects like fevers, fatigue, headache, chills, and sometimes swollen lymph nodes.

These kinds of side effects appear to be less common in children ages 5 to 11 than they have been in teens and adults, and they were temporary.

No cases of myocarditis or pericarditis were seen in the studies, but myocarditis is a very rare side effect, and the studies were too small to pick up these cases.

Still, doctors say they’re watching for it. In general, the greatest risk for myocarditis after vaccination has been seen in younger males between the ages of 12 and 30.

Even without COVID-19 or vaccines in the mix, doctors expect to see as many as two cases of myocarditis for every million people over the course of a week. The risk for myocarditis jumps up to about 11 cases for every million doses of mRNA vaccine given to men ages 25 to 30. It’s between 37 and 69 cases per million doses in boys between the ages of 12 and 24.

Still, experts say the possibility of this rare risk shouldn’t deter parents from vaccinating younger children.

Here’s why: The risk for myocarditis is higher after COVID-19 infection than after vaccination. Younger children have a lower risk for myocarditis than teens and young adults, suggesting that this side effect may be less frequent in this age group, although that remains to be seen.

Additionally, the smaller dose authorized for children is expected to minimize the risk for myocarditis even further.

The CDC says parents should call their doctor if a child develops pain in their chest, has trouble breathing, or feels like they have a beating or fluttering heart after vaccination.

What about benefits?

Models looking at the impact of vaccines in this age group predict that, nationally, cases would drop by about 8% if children are vaccinated.

The models also suggested that vaccination of kids this age would slow — but not stop — the emergence of new variants.

For every million doses, the CDC’s modeling predicts that more than 56,000 COVID-19 infections would be prevented in this age group, along with dozens of hospitalizations, and post-COVID conditions like multisystem inflammatory syndrome in children.

CDC experts estimate that just 10 kids would need to be vaccinated over 6 months to prevent a single case of COVID-19.

The CDC pointed out that vaccinating kids may help slow transmission of the virus and would give parents and other caregivers greater confidence in participating in school and extracurricular activities.

CDC experts said they would use a variety of systems, including hospital networks, the open Vaccines and Adverse Events Reporting System (VAERS) database, the cell-phone based V-SAFE app, and insurance claims databases to keep an eye out for any rare adverse events related to the vaccines in children.

This article, a version of which first appeared on Medscape.com, was updated on Nov. 3, 2021.

Centers for Disease Control and Prevention (CDC) Director Rochelle Walensky, MD, has endorsed a two-dose regimen of Pfizer’s lower-dose mRNA vaccine for children ages 5 through 11 years-old – meaning the shots are now available for immediate use.

The Nov. 2 decision came mere hours after experts that advise the CDC on vaccinations strongly recommended the vaccine for this age group.

“Together, with science leading the charge, we have taken another important step forward in our nation’s fight against the virus that causes COVID-19. We know millions of parents are eager to get their children vaccinated and with this decision, we now have recommended that about 28 million children receive a COVID-19 vaccine. As a mom, I encourage parents with questions to talk to their pediatrician, school nurse, or local pharmacist to learn more about the vaccine and the importance of getting their children vaccinated,” Dr. Walensky said in a prepared statement.

President Joe Biden applauded Dr. Walensky’s endorsement: “Today, we have reached a turning point in our battle against COVID-19: authorization of a safe, effective vaccine for children age 5 to 11. It will allow parents to end months of anxious worrying about their kids, and reduce the extent to which children spread the virus to others. It is a major step forward for our nation in our fight to defeat the virus,” he said in a statement.

The 14 members of the Advisory Committee on Immunization Practices (ACIP) voted unanimously earlier in the day to recommend the vaccine for kids.

“I feel like I have a responsibility to make this vaccine available to children and their parents,” said committee member Beth Bell, MD, MPH, a clinical professor at the University of Washington in Seattle. Bell noted that all evidence the committee had reviewed pointed to a vaccine that was safe and effective for younger children.

“If I had a grandchild, I would certainly get that grandchild vaccinated as soon as possible,” she said.

Their recommendations follow the U.S. Food and Drug Administration’s emergency authorization of Pfizer-BioNTech’s vaccine for this same age group last week.

“I’m voting for this because I think it could have a huge positive impact on [kids’] health and their social and emotional wellbeing,” said Grace Lee, MD, a professor of pediatrics at Stanford University School of Medicine, who chairs the CDC’s ACIP.

She noted that, though masks are available to reduce the risk for kids, they aren’t perfect and transmission still occurs.

“Vaccines are really the only consistent and reliable way to provide that protection,” Lee said.

The vaccine for children is two doses given 3 weeks apart. Each dose is 10 micrograms, which is one-third of the dose used in adults and teens.

To avoid confusion, the smaller dose for kids will come in bottles with orange labels and orange tops. The vaccine for adults is packaged in purple.

The CDC also addressed the question of kids who are close to age 12 when they get their first dose.

In general, pediatricians allow for a 4-day grace period around birthdays to determine which dose is needed. That will be the same with the COVID-19 vaccine.

For kids who are 11 when they start the series, they should get another 10-microgram dose after they turn 12 a few weeks later.

COVID-19 cases in this age group have climbed sharply over the summer and into the fall as schools have fully reopened, sometimes without the benefit of masks.

In the first week of October, roughly 10% of all COVID-19 cases recorded in the United States were among children ages 5 through 11. Since the start of pandemic, about 1.9 million children in this age group have been infected, though that’s almost certainly an undercount. More than 8,300 have been hospitalized, and 94 children have died.

Children of color have been disproportionately impacted. More than two-thirds of hospitalized children have been black or Hispanic.

Weighing benefits and risks

In clinical trials that included more than 4,600 children, the most common adverse events were pain and swelling at the injection site. They could also have side effects like fevers, fatigue, headache, chills, and sometimes swollen lymph nodes.

These kinds of side effects appear to be less common in children ages 5 to 11 than they have been in teens and adults, and they were temporary.

No cases of myocarditis or pericarditis were seen in the studies, but myocarditis is a very rare side effect, and the studies were too small to pick up these cases.

Still, doctors say they’re watching for it. In general, the greatest risk for myocarditis after vaccination has been seen in younger males between the ages of 12 and 30.

Even without COVID-19 or vaccines in the mix, doctors expect to see as many as two cases of myocarditis for every million people over the course of a week. The risk for myocarditis jumps up to about 11 cases for every million doses of mRNA vaccine given to men ages 25 to 30. It’s between 37 and 69 cases per million doses in boys between the ages of 12 and 24.

Still, experts say the possibility of this rare risk shouldn’t deter parents from vaccinating younger children.

Here’s why: The risk for myocarditis is higher after COVID-19 infection than after vaccination. Younger children have a lower risk for myocarditis than teens and young adults, suggesting that this side effect may be less frequent in this age group, although that remains to be seen.

Additionally, the smaller dose authorized for children is expected to minimize the risk for myocarditis even further.

The CDC says parents should call their doctor if a child develops pain in their chest, has trouble breathing, or feels like they have a beating or fluttering heart after vaccination.

What about benefits?

Models looking at the impact of vaccines in this age group predict that, nationally, cases would drop by about 8% if children are vaccinated.

The models also suggested that vaccination of kids this age would slow — but not stop — the emergence of new variants.

For every million doses, the CDC’s modeling predicts that more than 56,000 COVID-19 infections would be prevented in this age group, along with dozens of hospitalizations, and post-COVID conditions like multisystem inflammatory syndrome in children.

CDC experts estimate that just 10 kids would need to be vaccinated over 6 months to prevent a single case of COVID-19.

The CDC pointed out that vaccinating kids may help slow transmission of the virus and would give parents and other caregivers greater confidence in participating in school and extracurricular activities.

CDC experts said they would use a variety of systems, including hospital networks, the open Vaccines and Adverse Events Reporting System (VAERS) database, the cell-phone based V-SAFE app, and insurance claims databases to keep an eye out for any rare adverse events related to the vaccines in children.

This article, a version of which first appeared on Medscape.com, was updated on Nov. 3, 2021.

Centers for Disease Control and Prevention (CDC) Director Rochelle Walensky, MD, has endorsed a two-dose regimen of Pfizer’s lower-dose mRNA vaccine for children ages 5 through 11 years-old – meaning the shots are now available for immediate use.

The Nov. 2 decision came mere hours after experts that advise the CDC on vaccinations strongly recommended the vaccine for this age group.

“Together, with science leading the charge, we have taken another important step forward in our nation’s fight against the virus that causes COVID-19. We know millions of parents are eager to get their children vaccinated and with this decision, we now have recommended that about 28 million children receive a COVID-19 vaccine. As a mom, I encourage parents with questions to talk to their pediatrician, school nurse, or local pharmacist to learn more about the vaccine and the importance of getting their children vaccinated,” Dr. Walensky said in a prepared statement.

President Joe Biden applauded Dr. Walensky’s endorsement: “Today, we have reached a turning point in our battle against COVID-19: authorization of a safe, effective vaccine for children age 5 to 11. It will allow parents to end months of anxious worrying about their kids, and reduce the extent to which children spread the virus to others. It is a major step forward for our nation in our fight to defeat the virus,” he said in a statement.

The 14 members of the Advisory Committee on Immunization Practices (ACIP) voted unanimously earlier in the day to recommend the vaccine for kids.

“I feel like I have a responsibility to make this vaccine available to children and their parents,” said committee member Beth Bell, MD, MPH, a clinical professor at the University of Washington in Seattle. Bell noted that all evidence the committee had reviewed pointed to a vaccine that was safe and effective for younger children.

“If I had a grandchild, I would certainly get that grandchild vaccinated as soon as possible,” she said.

Their recommendations follow the U.S. Food and Drug Administration’s emergency authorization of Pfizer-BioNTech’s vaccine for this same age group last week.

“I’m voting for this because I think it could have a huge positive impact on [kids’] health and their social and emotional wellbeing,” said Grace Lee, MD, a professor of pediatrics at Stanford University School of Medicine, who chairs the CDC’s ACIP.

She noted that, though masks are available to reduce the risk for kids, they aren’t perfect and transmission still occurs.

“Vaccines are really the only consistent and reliable way to provide that protection,” Lee said.

The vaccine for children is two doses given 3 weeks apart. Each dose is 10 micrograms, which is one-third of the dose used in adults and teens.

To avoid confusion, the smaller dose for kids will come in bottles with orange labels and orange tops. The vaccine for adults is packaged in purple.

The CDC also addressed the question of kids who are close to age 12 when they get their first dose.

In general, pediatricians allow for a 4-day grace period around birthdays to determine which dose is needed. That will be the same with the COVID-19 vaccine.

For kids who are 11 when they start the series, they should get another 10-microgram dose after they turn 12 a few weeks later.

COVID-19 cases in this age group have climbed sharply over the summer and into the fall as schools have fully reopened, sometimes without the benefit of masks.

In the first week of October, roughly 10% of all COVID-19 cases recorded in the United States were among children ages 5 through 11. Since the start of pandemic, about 1.9 million children in this age group have been infected, though that’s almost certainly an undercount. More than 8,300 have been hospitalized, and 94 children have died.

Children of color have been disproportionately impacted. More than two-thirds of hospitalized children have been black or Hispanic.

Weighing benefits and risks

In clinical trials that included more than 4,600 children, the most common adverse events were pain and swelling at the injection site. They could also have side effects like fevers, fatigue, headache, chills, and sometimes swollen lymph nodes.

These kinds of side effects appear to be less common in children ages 5 to 11 than they have been in teens and adults, and they were temporary.

No cases of myocarditis or pericarditis were seen in the studies, but myocarditis is a very rare side effect, and the studies were too small to pick up these cases.

Still, doctors say they’re watching for it. In general, the greatest risk for myocarditis after vaccination has been seen in younger males between the ages of 12 and 30.

Even without COVID-19 or vaccines in the mix, doctors expect to see as many as two cases of myocarditis for every million people over the course of a week. The risk for myocarditis jumps up to about 11 cases for every million doses of mRNA vaccine given to men ages 25 to 30. It’s between 37 and 69 cases per million doses in boys between the ages of 12 and 24.

Still, experts say the possibility of this rare risk shouldn’t deter parents from vaccinating younger children.

Here’s why: The risk for myocarditis is higher after COVID-19 infection than after vaccination. Younger children have a lower risk for myocarditis than teens and young adults, suggesting that this side effect may be less frequent in this age group, although that remains to be seen.

Additionally, the smaller dose authorized for children is expected to minimize the risk for myocarditis even further.

The CDC says parents should call their doctor if a child develops pain in their chest, has trouble breathing, or feels like they have a beating or fluttering heart after vaccination.

What about benefits?

Models looking at the impact of vaccines in this age group predict that, nationally, cases would drop by about 8% if children are vaccinated.

The models also suggested that vaccination of kids this age would slow — but not stop — the emergence of new variants.

For every million doses, the CDC’s modeling predicts that more than 56,000 COVID-19 infections would be prevented in this age group, along with dozens of hospitalizations, and post-COVID conditions like multisystem inflammatory syndrome in children.

CDC experts estimate that just 10 kids would need to be vaccinated over 6 months to prevent a single case of COVID-19.

The CDC pointed out that vaccinating kids may help slow transmission of the virus and would give parents and other caregivers greater confidence in participating in school and extracurricular activities.

CDC experts said they would use a variety of systems, including hospital networks, the open Vaccines and Adverse Events Reporting System (VAERS) database, the cell-phone based V-SAFE app, and insurance claims databases to keep an eye out for any rare adverse events related to the vaccines in children.

This article, a version of which first appeared on Medscape.com, was updated on Nov. 3, 2021.

Youth identifying as lesbian, gay, or bisexual were significantly less likely than were their peers to communicate with a physician or utilize health care in the past 12 months, according to data from a cohort study of approximately 4,000 adolescents.

Disparities in physical and mental health outcomes for individuals who identify as lesbian, gay, or bisexual (LGB) persist in the United States, and emerge in adolescents and young adults, wrote Sari L. Reisner, ScD, of Boston Children’s Hospital, and colleagues.

“LGB adult research indicates substantial unmet medical needs, including needed care and preventive care,” for reasons including “reluctance to disclose sexual identity to clinicians, lower health insurance rates, lack of culturally appropriate preventive services, and lack of clinician LGB care competence,” they said.

However, health use trends by adolescents who identify as LGB have not been well studied, they noted.

In a study published in JAMA Network Open, the researchers analyzed data from 4,256 participants in the third wave (10th grade) of adolescents in Healthy Passages, a longitudinal, observational cohort study of diverse public school students in Birmingham, Ala.; Houston; and Los Angeles County. Data were collected in grades 5, 7, and 10.

The study population included 640 youth who identified as LGB, and 3,616 non-LGB youth. Sexual status was based on responses to questions in the grade 10 youth survey. Health care use was based on the responses to questions about routine care, such as a regular checkup, and other care, such as a sick visit. Data on delayed care were collected from parents and youth. At baseline, the average age of the study participants in fifth grade was 11 years, 48.9% were female, 44.5% were Hispanic or Latino, and 28.9% were Black.

Overall, more LGB youth reported not receiving needed medical care when they thought they needed it within the past 12 months compared with non-LGB youth (42.4% of LGB vs. 30.2% of non-LGB youth; adjusted odds ratio 1.68). The most common conditions for which LGB youth did not seek care were sexually transmitted infections, contraception, and substance use.

Overall, the main reason given for not seeking medical care was that they thought the problem would go away (approximately 26% for LGB and non-LGB). Approximately twice as many LGB youth as non-LGB youth said they avoided medical care because they did not want their parents to know (14.5% vs. 9.4%).

Significantly more LGB youth than non-LGB youth reported difficulty communicating with their physicians in the past 12 months (15.3% vs. 9.4%; aOR 1.71). The main reasons for not communicating with a clinician about a topic of concern were that the adolescent did not want parents to know (40.7% of LGB and 30.2% of non-LGB) and that they were too embarrassed to talk about the topic (37.5% of LGB and 25.9% of non-LGB).

The researchers were not surprised that “LGB youth self-reported greater difficulty communicating with a clinician about topics they wanted to discuss,” but they found no significant differences in reasons for communication difficulty based on sexual orientation.

Approximately two-thirds (65.8%) of LGB youth reported feeling “a little or not at all comfortable” talking to a health care clinician about their sexual attractions, compared with approximately one-third (37.8%) of non-LGB youth.

Only 12.5% of the LGB youth said that their clinicians knew their sexual orientation, the researchers noted. However, clinicians need to know youths’ sexual orientation to provide appropriate and comprehensive care, they said, especially in light of the known negative health consequences of LGB internalized stigma, as well as the pertinence of certain sexual behaviors to preventive care and screening.

The study findings were limited by several factors including the cross-sectional design and inability to show causality, and by the incongruence of different dimensions of sexual orientation, the researchers noted. Other limitations included the use only of English and Spanish language, and a lack of complete information on disclosure of sexual orientation to parents, the researchers noted.

The results were strengthened by the diverse demographics, although they may not be generalizable to a wider population, they added.

However, the data show that responsive health care is needed to reduce disparities for LGB youth, they emphasized. “Care should be sensitive and respectful to sexual orientation for all youth, with clinicians taking time to ask adolescents about their sexual identity, attractions, and behaviors, particularly in sexual and reproductive health,” they concluded.
 

Adolescents suffer barriers similar to those of adults

“We know that significant health disparities exist for LGBTQ adults and adolescents,” Kelly Curran, MD, of the University of Oklahoma Health Sciences Center, Oklahoma City, said in an interview. “LGBTQ adults often have had poor experiences during health care encounters – ranging from poor interactions with inadequately trained clinicians to frank discrimination,” she said. “These experiences can prevent individuals from seeking health care in the future or disclosing important information during a medical visit, both of which can contribute to worsened health outcomes,” she emphasized.

Prior to this study, data to confirm similar patterns of decreased health care utilization in LGB youth were limited, Dr. Curran said. “Identifying and understanding barriers to health care for LGBTQ youth are essential to help address the disparities in this population,” she said.

Dr. Curran said she was not surprised by the study findings for adolescents, which reflect patterns seen in LGBTQ adults.

Overcoming barriers to encourage LGB youth to seek regular medical care involves “training health care professionals about LGBTQ health, teaching the skill of taking a nonjudgmental, inclusive history, and making health care facilities welcoming and inclusive, such as displaying a pride flag in clinic, and using forms asking for pronouns,” Dr. Curran said.

Dr. Curran said she thinks the trends in decreased health care use are similar for transgender youth. “I suspect, if anything, that transgender youth will have even further decreased health care utilization when compared to cisgender heterosexual peers and LGB peers,” she noted.

Going forward, it will be important to understand the reasons behind decreased health care use among LGB youth, such as poor experiences, discrimination, or fears about confidentiality, said Dr. Curran. “Additionally, it would be important to understand if this decreased health utilization also occurs with transgender youth,” she said.

The Healthy Passages Study was funded by the Centers for Disease Control and Prevention. One of the study coauthors disclosed funding from the Agency for Healthcare Research and Quality as part of the Harvard-wide Pediatric Health Services Research Fellowship Program. The researchers had no financial conflicts to disclose. Dr. Curran had no financial conflicts to disclose, but serves on the editorial advisory board of Pediatric News.

Youth identifying as lesbian, gay, or bisexual were significantly less likely than were their peers to communicate with a physician or utilize health care in the past 12 months, according to data from a cohort study of approximately 4,000 adolescents.

Disparities in physical and mental health outcomes for individuals who identify as lesbian, gay, or bisexual (LGB) persist in the United States, and emerge in adolescents and young adults, wrote Sari L. Reisner, ScD, of Boston Children’s Hospital, and colleagues.

“LGB adult research indicates substantial unmet medical needs, including needed care and preventive care,” for reasons including “reluctance to disclose sexual identity to clinicians, lower health insurance rates, lack of culturally appropriate preventive services, and lack of clinician LGB care competence,” they said.

However, health use trends by adolescents who identify as LGB have not been well studied, they noted.

In a study published in JAMA Network Open, the researchers analyzed data from 4,256 participants in the third wave (10th grade) of adolescents in Healthy Passages, a longitudinal, observational cohort study of diverse public school students in Birmingham, Ala.; Houston; and Los Angeles County. Data were collected in grades 5, 7, and 10.

The study population included 640 youth who identified as LGB, and 3,616 non-LGB youth. Sexual status was based on responses to questions in the grade 10 youth survey. Health care use was based on the responses to questions about routine care, such as a regular checkup, and other care, such as a sick visit. Data on delayed care were collected from parents and youth. At baseline, the average age of the study participants in fifth grade was 11 years, 48.9% were female, 44.5% were Hispanic or Latino, and 28.9% were Black.

Overall, more LGB youth reported not receiving needed medical care when they thought they needed it within the past 12 months compared with non-LGB youth (42.4% of LGB vs. 30.2% of non-LGB youth; adjusted odds ratio 1.68). The most common conditions for which LGB youth did not seek care were sexually transmitted infections, contraception, and substance use.

Overall, the main reason given for not seeking medical care was that they thought the problem would go away (approximately 26% for LGB and non-LGB). Approximately twice as many LGB youth as non-LGB youth said they avoided medical care because they did not want their parents to know (14.5% vs. 9.4%).

Significantly more LGB youth than non-LGB youth reported difficulty communicating with their physicians in the past 12 months (15.3% vs. 9.4%; aOR 1.71). The main reasons for not communicating with a clinician about a topic of concern were that the adolescent did not want parents to know (40.7% of LGB and 30.2% of non-LGB) and that they were too embarrassed to talk about the topic (37.5% of LGB and 25.9% of non-LGB).

The researchers were not surprised that “LGB youth self-reported greater difficulty communicating with a clinician about topics they wanted to discuss,” but they found no significant differences in reasons for communication difficulty based on sexual orientation.

Approximately two-thirds (65.8%) of LGB youth reported feeling “a little or not at all comfortable” talking to a health care clinician about their sexual attractions, compared with approximately one-third (37.8%) of non-LGB youth.

Only 12.5% of the LGB youth said that their clinicians knew their sexual orientation, the researchers noted. However, clinicians need to know youths’ sexual orientation to provide appropriate and comprehensive care, they said, especially in light of the known negative health consequences of LGB internalized stigma, as well as the pertinence of certain sexual behaviors to preventive care and screening.

The study findings were limited by several factors including the cross-sectional design and inability to show causality, and by the incongruence of different dimensions of sexual orientation, the researchers noted. Other limitations included the use only of English and Spanish language, and a lack of complete information on disclosure of sexual orientation to parents, the researchers noted.

The results were strengthened by the diverse demographics, although they may not be generalizable to a wider population, they added.

However, the data show that responsive health care is needed to reduce disparities for LGB youth, they emphasized. “Care should be sensitive and respectful to sexual orientation for all youth, with clinicians taking time to ask adolescents about their sexual identity, attractions, and behaviors, particularly in sexual and reproductive health,” they concluded.
 

Adolescents suffer barriers similar to those of adults

“We know that significant health disparities exist for LGBTQ adults and adolescents,” Kelly Curran, MD, of the University of Oklahoma Health Sciences Center, Oklahoma City, said in an interview. “LGBTQ adults often have had poor experiences during health care encounters – ranging from poor interactions with inadequately trained clinicians to frank discrimination,” she said. “These experiences can prevent individuals from seeking health care in the future or disclosing important information during a medical visit, both of which can contribute to worsened health outcomes,” she emphasized.

Prior to this study, data to confirm similar patterns of decreased health care utilization in LGB youth were limited, Dr. Curran said. “Identifying and understanding barriers to health care for LGBTQ youth are essential to help address the disparities in this population,” she said.

Dr. Curran said she was not surprised by the study findings for adolescents, which reflect patterns seen in LGBTQ adults.

Overcoming barriers to encourage LGB youth to seek regular medical care involves “training health care professionals about LGBTQ health, teaching the skill of taking a nonjudgmental, inclusive history, and making health care facilities welcoming and inclusive, such as displaying a pride flag in clinic, and using forms asking for pronouns,” Dr. Curran said.

Dr. Curran said she thinks the trends in decreased health care use are similar for transgender youth. “I suspect, if anything, that transgender youth will have even further decreased health care utilization when compared to cisgender heterosexual peers and LGB peers,” she noted.

Going forward, it will be important to understand the reasons behind decreased health care use among LGB youth, such as poor experiences, discrimination, or fears about confidentiality, said Dr. Curran. “Additionally, it would be important to understand if this decreased health utilization also occurs with transgender youth,” she said.

The Healthy Passages Study was funded by the Centers for Disease Control and Prevention. One of the study coauthors disclosed funding from the Agency for Healthcare Research and Quality as part of the Harvard-wide Pediatric Health Services Research Fellowship Program. The researchers had no financial conflicts to disclose. Dr. Curran had no financial conflicts to disclose, but serves on the editorial advisory board of Pediatric News.

Youth identifying as lesbian, gay, or bisexual were significantly less likely than were their peers to communicate with a physician or utilize health care in the past 12 months, according to data from a cohort study of approximately 4,000 adolescents.

Disparities in physical and mental health outcomes for individuals who identify as lesbian, gay, or bisexual (LGB) persist in the United States, and emerge in adolescents and young adults, wrote Sari L. Reisner, ScD, of Boston Children’s Hospital, and colleagues.

“LGB adult research indicates substantial unmet medical needs, including needed care and preventive care,” for reasons including “reluctance to disclose sexual identity to clinicians, lower health insurance rates, lack of culturally appropriate preventive services, and lack of clinician LGB care competence,” they said.

However, health use trends by adolescents who identify as LGB have not been well studied, they noted.

In a study published in JAMA Network Open, the researchers analyzed data from 4,256 participants in the third wave (10th grade) of adolescents in Healthy Passages, a longitudinal, observational cohort study of diverse public school students in Birmingham, Ala.; Houston; and Los Angeles County. Data were collected in grades 5, 7, and 10.

The study population included 640 youth who identified as LGB, and 3,616 non-LGB youth. Sexual status was based on responses to questions in the grade 10 youth survey. Health care use was based on the responses to questions about routine care, such as a regular checkup, and other care, such as a sick visit. Data on delayed care were collected from parents and youth. At baseline, the average age of the study participants in fifth grade was 11 years, 48.9% were female, 44.5% were Hispanic or Latino, and 28.9% were Black.

Overall, more LGB youth reported not receiving needed medical care when they thought they needed it within the past 12 months compared with non-LGB youth (42.4% of LGB vs. 30.2% of non-LGB youth; adjusted odds ratio 1.68). The most common conditions for which LGB youth did not seek care were sexually transmitted infections, contraception, and substance use.

Overall, the main reason given for not seeking medical care was that they thought the problem would go away (approximately 26% for LGB and non-LGB). Approximately twice as many LGB youth as non-LGB youth said they avoided medical care because they did not want their parents to know (14.5% vs. 9.4%).

Significantly more LGB youth than non-LGB youth reported difficulty communicating with their physicians in the past 12 months (15.3% vs. 9.4%; aOR 1.71). The main reasons for not communicating with a clinician about a topic of concern were that the adolescent did not want parents to know (40.7% of LGB and 30.2% of non-LGB) and that they were too embarrassed to talk about the topic (37.5% of LGB and 25.9% of non-LGB).

The researchers were not surprised that “LGB youth self-reported greater difficulty communicating with a clinician about topics they wanted to discuss,” but they found no significant differences in reasons for communication difficulty based on sexual orientation.

Approximately two-thirds (65.8%) of LGB youth reported feeling “a little or not at all comfortable” talking to a health care clinician about their sexual attractions, compared with approximately one-third (37.8%) of non-LGB youth.

Only 12.5% of the LGB youth said that their clinicians knew their sexual orientation, the researchers noted. However, clinicians need to know youths’ sexual orientation to provide appropriate and comprehensive care, they said, especially in light of the known negative health consequences of LGB internalized stigma, as well as the pertinence of certain sexual behaviors to preventive care and screening.

The study findings were limited by several factors including the cross-sectional design and inability to show causality, and by the incongruence of different dimensions of sexual orientation, the researchers noted. Other limitations included the use only of English and Spanish language, and a lack of complete information on disclosure of sexual orientation to parents, the researchers noted.

The results were strengthened by the diverse demographics, although they may not be generalizable to a wider population, they added.

However, the data show that responsive health care is needed to reduce disparities for LGB youth, they emphasized. “Care should be sensitive and respectful to sexual orientation for all youth, with clinicians taking time to ask adolescents about their sexual identity, attractions, and behaviors, particularly in sexual and reproductive health,” they concluded.
 

Adolescents suffer barriers similar to those of adults

“We know that significant health disparities exist for LGBTQ adults and adolescents,” Kelly Curran, MD, of the University of Oklahoma Health Sciences Center, Oklahoma City, said in an interview. “LGBTQ adults often have had poor experiences during health care encounters – ranging from poor interactions with inadequately trained clinicians to frank discrimination,” she said. “These experiences can prevent individuals from seeking health care in the future or disclosing important information during a medical visit, both of which can contribute to worsened health outcomes,” she emphasized.

Prior to this study, data to confirm similar patterns of decreased health care utilization in LGB youth were limited, Dr. Curran said. “Identifying and understanding barriers to health care for LGBTQ youth are essential to help address the disparities in this population,” she said.

Dr. Curran said she was not surprised by the study findings for adolescents, which reflect patterns seen in LGBTQ adults.

Overcoming barriers to encourage LGB youth to seek regular medical care involves “training health care professionals about LGBTQ health, teaching the skill of taking a nonjudgmental, inclusive history, and making health care facilities welcoming and inclusive, such as displaying a pride flag in clinic, and using forms asking for pronouns,” Dr. Curran said.

Dr. Curran said she thinks the trends in decreased health care use are similar for transgender youth. “I suspect, if anything, that transgender youth will have even further decreased health care utilization when compared to cisgender heterosexual peers and LGB peers,” she noted.

Going forward, it will be important to understand the reasons behind decreased health care use among LGB youth, such as poor experiences, discrimination, or fears about confidentiality, said Dr. Curran. “Additionally, it would be important to understand if this decreased health utilization also occurs with transgender youth,” she said.

The Healthy Passages Study was funded by the Centers for Disease Control and Prevention. One of the study coauthors disclosed funding from the Agency for Healthcare Research and Quality as part of the Harvard-wide Pediatric Health Services Research Fellowship Program. The researchers had no financial conflicts to disclose. Dr. Curran had no financial conflicts to disclose, but serves on the editorial advisory board of Pediatric News.

With children aged 5-11 years about to enter the battle-of-the-COVID-vaccine phase of the war on COVID, there are many questions. MDedge takes a look at one: How long will it take to get 5- to 11-year-olds vaccinated?

Previous experience may provide some guidance. The vaccine was approved by the Centers for Disease Control and Prevention for the closest group in age, 12- to 15-year-olds, on May 12, 2021, and by May 17, over 750,000 children, or 5% of the demographic category, had received at least one dose. By Sept. 9 – 109 days later – 50% of all 15.2 million children aged 12-15 had received at least one dose of the COVID-19 vaccine, according to data from the CDC.

(Use of the 5% figure acknowledges the uneven start after approval – the vaccine became available to different age groups at different times, even though it had been approved for all adults aged 18 years and older.)

The 16- to 17-year-olds, despite being a smaller group of less than 7.6 million individuals, took 120 days to go from 5% to 50% coverage. For those aged 18-24 years, the corresponding time was 132 days, while the 24- to 36-year-olds took longer than any other age group, 135 days, to reach the 50%-with-at-least-one-dose milestone. The time, in turn, decreased for each group as age increased, with those aged 75 and older taking just 41 days to get at least one dose in 50% of individuals, the CDC data show.

That trend also applies to full vaccination, for the most part. The oldest group, 75 and older, had the shortest time to 50% being fully vaccinated at 69 days, and the 25- to 39-year-olds had the longest time at 206 days, with the length rising as age decreased and dropping for groups younger than 25-39. Except for the 12- to 15-year-olds. It has been 160 days (as of Nov. 2) since the 5% mark was reached on May 17, but only 47.4% of the group is fully vaccinated, making it unlikely that the 50% mark will be reached earlier than the 169 days it took the 16- to 17-year-olds.

So where does that put the 5- to 11-year-olds?

The White House said on Nov. 1 that vaccinations could start the first week of November, pending approval from the CDC’s Advisory Committee on Immunization Practices, which meets on Nov. 2. “This is an important step forward in our nation’s fight against the virus,” Jeff Zients, the White House COVID-19 Response Coordinator, said in a briefing. “As we await the CDC decision, we are not waiting on the operations and logistics. In fact, we’ve been preparing for weeks.”

Availability, of course, is not the only factor involved. In a survey conducted Oct. 14-24, the Kaiser Family Foundation found that only 27% of parents of children aged 5-11 years are planning to have them vaccinated against COVID-19 “right away” once the vaccine is available, and that 33% would “wait and see” how the vaccine works.

“Parents of 5-11 year-olds cite a range of concerns when it comes to vaccinating their children for COVID-19, with safety issues topping off the list,” and “two-thirds say they are concerned the vaccine may negatively impact their child’s fertility in the future,” Kaiser said.

[email protected]

With children aged 5-11 years about to enter the battle-of-the-COVID-vaccine phase of the war on COVID, there are many questions. MDedge takes a look at one: How long will it take to get 5- to 11-year-olds vaccinated?

Previous experience may provide some guidance. The vaccine was approved by the Centers for Disease Control and Prevention for the closest group in age, 12- to 15-year-olds, on May 12, 2021, and by May 17, over 750,000 children, or 5% of the demographic category, had received at least one dose. By Sept. 9 – 109 days later – 50% of all 15.2 million children aged 12-15 had received at least one dose of the COVID-19 vaccine, according to data from the CDC.

(Use of the 5% figure acknowledges the uneven start after approval – the vaccine became available to different age groups at different times, even though it had been approved for all adults aged 18 years and older.)

The 16- to 17-year-olds, despite being a smaller group of less than 7.6 million individuals, took 120 days to go from 5% to 50% coverage. For those aged 18-24 years, the corresponding time was 132 days, while the 24- to 36-year-olds took longer than any other age group, 135 days, to reach the 50%-with-at-least-one-dose milestone. The time, in turn, decreased for each group as age increased, with those aged 75 and older taking just 41 days to get at least one dose in 50% of individuals, the CDC data show.

That trend also applies to full vaccination, for the most part. The oldest group, 75 and older, had the shortest time to 50% being fully vaccinated at 69 days, and the 25- to 39-year-olds had the longest time at 206 days, with the length rising as age decreased and dropping for groups younger than 25-39. Except for the 12- to 15-year-olds. It has been 160 days (as of Nov. 2) since the 5% mark was reached on May 17, but only 47.4% of the group is fully vaccinated, making it unlikely that the 50% mark will be reached earlier than the 169 days it took the 16- to 17-year-olds.

So where does that put the 5- to 11-year-olds?

The White House said on Nov. 1 that vaccinations could start the first week of November, pending approval from the CDC’s Advisory Committee on Immunization Practices, which meets on Nov. 2. “This is an important step forward in our nation’s fight against the virus,” Jeff Zients, the White House COVID-19 Response Coordinator, said in a briefing. “As we await the CDC decision, we are not waiting on the operations and logistics. In fact, we’ve been preparing for weeks.”

Availability, of course, is not the only factor involved. In a survey conducted Oct. 14-24, the Kaiser Family Foundation found that only 27% of parents of children aged 5-11 years are planning to have them vaccinated against COVID-19 “right away” once the vaccine is available, and that 33% would “wait and see” how the vaccine works.

“Parents of 5-11 year-olds cite a range of concerns when it comes to vaccinating their children for COVID-19, with safety issues topping off the list,” and “two-thirds say they are concerned the vaccine may negatively impact their child’s fertility in the future,” Kaiser said.

[email protected]

With children aged 5-11 years about to enter the battle-of-the-COVID-vaccine phase of the war on COVID, there are many questions. MDedge takes a look at one: How long will it take to get 5- to 11-year-olds vaccinated?

Previous experience may provide some guidance. The vaccine was approved by the Centers for Disease Control and Prevention for the closest group in age, 12- to 15-year-olds, on May 12, 2021, and by May 17, over 750,000 children, or 5% of the demographic category, had received at least one dose. By Sept. 9 – 109 days later – 50% of all 15.2 million children aged 12-15 had received at least one dose of the COVID-19 vaccine, according to data from the CDC.

(Use of the 5% figure acknowledges the uneven start after approval – the vaccine became available to different age groups at different times, even though it had been approved for all adults aged 18 years and older.)

The 16- to 17-year-olds, despite being a smaller group of less than 7.6 million individuals, took 120 days to go from 5% to 50% coverage. For those aged 18-24 years, the corresponding time was 132 days, while the 24- to 36-year-olds took longer than any other age group, 135 days, to reach the 50%-with-at-least-one-dose milestone. The time, in turn, decreased for each group as age increased, with those aged 75 and older taking just 41 days to get at least one dose in 50% of individuals, the CDC data show.

That trend also applies to full vaccination, for the most part. The oldest group, 75 and older, had the shortest time to 50% being fully vaccinated at 69 days, and the 25- to 39-year-olds had the longest time at 206 days, with the length rising as age decreased and dropping for groups younger than 25-39. Except for the 12- to 15-year-olds. It has been 160 days (as of Nov. 2) since the 5% mark was reached on May 17, but only 47.4% of the group is fully vaccinated, making it unlikely that the 50% mark will be reached earlier than the 169 days it took the 16- to 17-year-olds.

So where does that put the 5- to 11-year-olds?

The White House said on Nov. 1 that vaccinations could start the first week of November, pending approval from the CDC’s Advisory Committee on Immunization Practices, which meets on Nov. 2. “This is an important step forward in our nation’s fight against the virus,” Jeff Zients, the White House COVID-19 Response Coordinator, said in a briefing. “As we await the CDC decision, we are not waiting on the operations and logistics. In fact, we’ve been preparing for weeks.”

Availability, of course, is not the only factor involved. In a survey conducted Oct. 14-24, the Kaiser Family Foundation found that only 27% of parents of children aged 5-11 years are planning to have them vaccinated against COVID-19 “right away” once the vaccine is available, and that 33% would “wait and see” how the vaccine works.

“Parents of 5-11 year-olds cite a range of concerns when it comes to vaccinating their children for COVID-19, with safety issues topping off the list,” and “two-thirds say they are concerned the vaccine may negatively impact their child’s fertility in the future,” Kaiser said.

[email protected]

Inside the emergency department at Sparrow Hospital in Lansing, Mich., staff members are struggling to care for patients showing up much sicker than they’ve ever seen.

Tiffani Dusang, the ER’s nursing director, practically vibrates with pent-up anxiety, looking at patients lying on a long line of stretchers pushed up against the beige walls of the hospital hallways. “It’s hard to watch,” she said in a warm Texas twang.

But there’s nothing she can do. The ER’s 72 rooms are already filled.

“I always feel very, very bad when I walk down the hallway and see that people are in pain, or needing to sleep, or needing quiet. But they have to be in the hallway with, as you can see, 10 or 15 people walking by every minute,” Ms. Dusang said.

The scene is a stark contrast to where this emergency department — and thousands of others — were at the start of the pandemic. Except for initial hot spots like New York City, in spring 2020 many ERs across the country were often eerily empty. Terrified of contracting COVID-19, people who were sick with other things did their best to stay away from hospitals. Visits to emergency rooms dropped to half their typical levels, according to the Epic Health Research Network, and didn’t fully rebound until this summer.

But now, they’re too full. Even in parts of the country where covid isn’t overwhelming the health system, patients are showing up to the ER sicker than before the pandemic, their diseases more advanced and in need of more complicated care.

Months of treatment delays have exacerbated chronic conditions and worsened symptoms. Doctors and nurses say the severity of illness ranges widely and includes abdominal pain, respiratory problems, blood clots, heart conditions and suicide attempts, among other conditions.

But they can hardly be accommodated. Emergency departments, ideally, are meant to be brief ports in a storm, with patients staying just long enough to be sent home with instructions to follow up with primary care physicians, or sufficiently stabilized to be transferred “upstairs” to inpatient or intensive care units.

Except now those long-term care floors are full too, with a mix of covid and non-covid patients. People coming to the ER get warehoused for hours, even days, forcing ER staffers to perform long-term care roles they weren’t trained to do.

At Sparrow, space is a valuable commodity in the ER: A separate section of the hospital was turned into an overflow unit. Stretchers stack up in halls. A row of brown reclining chairs lines a wall, intended for patients who aren’t sick enough for a stretcher but are too sick to stay in the main waiting room.

Forget privacy, Alejos Perrientoz learned when he arrived. He came to the ER because his arm had been tingling and painful for over a week. He couldn’t hold a cup of coffee. A nurse gave him a full physical exam in a brown recliner, which made him self-conscious about having his shirt lifted in front of strangers. “I felt a little uncomfortable,” he whispered. “But I have no choice, you know? I’m in the hallway. There’s no rooms.

“We could have done the physical in the parking lot,” he added, managing a laugh.

Even patients who arrive by ambulance are not guaranteed a room: One nurse runs triage, screening those who absolutely need a bed, and those who can be put in the waiting area.

“I hate that we even have to make that determination,” MS. Dusang said. Lately, staff members have been pulling out some patients already in the ER’s rooms when others arrive who are more critically ill. “No one likes to take someone out of the privacy of their room and say, ‘We’re going to put you in a hallway because we need to get care to someone else.’”

ER patients have grown sicker

“We are hearing from members in every part of the country,” said Dr. Lisa Moreno, president of the American Academy of Emergency Medicine. “The Midwest, the South, the Northeast, the West … they are seeing this exact same phenomenon.”

Although the number of ER visits returned to pre-COVID levels this summer, admission rates, from the ER to the hospital’s inpatient floors, are still almost 20% higher. That’s according to the most recent analysis by the Epic Health Research Network, which pulls data from more than 120 million patients across the country.

“It’s an early indicator that what’s happening in the ED is that we’re seeing more acute cases than we were pre-pandemic,” said Caleb Cox, a data scientist at Epic.

Less acute cases, such as people with health issues like rashes or conjunctivitis, still aren’t going to the ER as much as they used to. Instead, they may be opting for an urgent care center or their primary care doctor, Mr. Cox explained. Meanwhile, there has been an increase in people coming to the ER with more serious conditions, like strokes and heart attacks.

So, even though the total number of patients coming to ERs is about the same as before the pandemic, “that’s absolutely going to feel like [if I’m an ER doctor or nurse] I’m seeing more patients and I’m seeing more acute patients,” Mr. Cox said.

Dr. Moreno, the AAEM president, works at an emergency department in New Orleans. She said the level of illness, and the inability to admit patients quickly and move them to beds upstairs, has created a level of chaos she described as “not even humane.”

At the beginning of a recent shift, she heard a patient crying nearby and went to investigate. It was a paraplegic man who’d recently had surgery for colon cancer. His large post-operative wound was sealed with a device called a wound vac, which pulls fluid from the wound into a drainage tube attached to a portable vacuum pump.

But the wound vac had malfunctioned, which is why he had come to the ER. Staffers were so busy, however, that by the time Dr. Moreno came in, the fluid from his wound was leaking everywhere.

“When I went in, the bed was covered,” she recalled. “I mean, he was lying in a puddle of secretions from this wound. And he was crying, because he said to me, ‘I’m paralyzed. I can’t move to get away from all these secretions, and I know I’m going to end up getting an infection. I know I’m going to end up getting an ulcer. I’ve been laying in this for, like, eight or nine hours.’”

The nurse in charge of his care told Dr. Moreno she simply hadn’t had time to help this patient yet. “She said, ‘I’ve had so many patients to take care of, and so many critical patients. I started [an IV] drip on this person. This person is on a cardiac monitor. I just didn’t have time to get in there.’”

“This is not humane care,” Dr. Moreno said. “This is horrible care.”

But it’s what can happen when emergency department staffers don’t have the resources they need to deal with the onslaught of competing demands.

“All the nurses and doctors had the highest level of intent to do the right thing for the person,” Dr. Moreno said. “But because of the high acuity of … a large number of patients, the staffing ratio of nurse to patient, even the staffing ratio of doctor to patient, this guy did not get the care that he deserved to get, just as a human being.”

The instance of unintended neglect that Dr. Moreno saw is extreme, and not the experience of most patients who arrive at ERs these days. But the problem is not new: Even before the pandemic, ER overcrowding had been a “widespread problem and a source of patient harm, according to a recent commentary in NEJM Catalyst Innovations in Care Delivery.

“ED crowding is not an issue of inconvenience,” the authors wrote. “There is incontrovertible evidence that ED crowding leads to significant patient harm, including morbidity and mortality related to consequential delays of treatment for both high- and low-acuity patients.”

And already-overwhelmed staffers are burning out.

Burnout feeds staffing shortages, and vice versa

Every morning, Tiffani Dusang wakes up and checks her Sparrow email with one singular hope: that she will not see yet another nurse resignation letter in her inbox.

“I cannot tell you how many of them [the nurses] tell me they went home crying” after their shifts, she said.

Despite Ms. Dusang’s best efforts to support her staffers, they’re leaving too fast to be replaced, either to take higher-paying gigs as a travel nurse, to try a less-stressful type of nursing, or simply walking away from the profession entirely.

Kelly Spitz has been an emergency department nurse at Sparrow for 10 years. But, lately, she has also fantasized about leaving. “It has crossed my mind several times,” she said, and yet she continues to come back. “Because I have a team here. And I love what I do.” But then she started to cry. The issue is not the hard work, or even the stress. She struggles with not being able to give her patients the kind of care and attention she wants to give them, and that they need and deserve, she said.

She often thinks about a patient whose test results revealed terminal cancer, she said. Ms. Spitz spent all day working the phones, hustling case managers, trying to get hospice care set up in the man’s home. He was going to die, and she just didn’t want him to have to die in the hospital, where only one visitor was allowed. She wanted to get him home, and back with his family.

Finally, after many hours, they found an ambulance to take him home.

Three days later, the man’s family members called Ms. Spitz: He had died surrounded by family. They were calling to thank her.

“I felt like I did my job there, because I got him home,” she said. But that’s a rare feeling these days. “I just hope it gets better. I hope it gets better soon.”

Around 4 p.m. at Sparrow Hospital as one shift approached its end, Ms. Dusang faced a new crisis: The overnight shift was more short-staffed than usual.

“Can we get two inpatient nurses?” she asked, hoping to borrow two nurses from one of the hospital floors upstairs.

“Already tried,” replied nurse Troy Latunski.

Without more staff, it’s going to be hard to care for new patients who come in overnight — from car crashes to seizures or other emergencies.

But Mr. Latunski had a plan: He would go home, snatch a few hours of sleep and return at 11 p.m. to work the overnight shift in the ER’s overflow unit. That meant he would be largely caring for eight patients, alone. On just a few short hours of sleep. But lately that seemed to be their only, and best, option.

Ms. Dusang considered for a moment, took a deep breath and nodded. “OK,” she said.

“Go home. Get some sleep. Thank you,” she added, shooting Mr. Latunski a grateful smile. And then she pivoted, because another nurse was approaching with an urgent question. On to the next crisis.

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

Inside the emergency department at Sparrow Hospital in Lansing, Mich., staff members are struggling to care for patients showing up much sicker than they’ve ever seen.

Tiffani Dusang, the ER’s nursing director, practically vibrates with pent-up anxiety, looking at patients lying on a long line of stretchers pushed up against the beige walls of the hospital hallways. “It’s hard to watch,” she said in a warm Texas twang.

But there’s nothing she can do. The ER’s 72 rooms are already filled.

“I always feel very, very bad when I walk down the hallway and see that people are in pain, or needing to sleep, or needing quiet. But they have to be in the hallway with, as you can see, 10 or 15 people walking by every minute,” Ms. Dusang said.

The scene is a stark contrast to where this emergency department — and thousands of others — were at the start of the pandemic. Except for initial hot spots like New York City, in spring 2020 many ERs across the country were often eerily empty. Terrified of contracting COVID-19, people who were sick with other things did their best to stay away from hospitals. Visits to emergency rooms dropped to half their typical levels, according to the Epic Health Research Network, and didn’t fully rebound until this summer.

But now, they’re too full. Even in parts of the country where covid isn’t overwhelming the health system, patients are showing up to the ER sicker than before the pandemic, their diseases more advanced and in need of more complicated care.

Months of treatment delays have exacerbated chronic conditions and worsened symptoms. Doctors and nurses say the severity of illness ranges widely and includes abdominal pain, respiratory problems, blood clots, heart conditions and suicide attempts, among other conditions.

But they can hardly be accommodated. Emergency departments, ideally, are meant to be brief ports in a storm, with patients staying just long enough to be sent home with instructions to follow up with primary care physicians, or sufficiently stabilized to be transferred “upstairs” to inpatient or intensive care units.

Except now those long-term care floors are full too, with a mix of covid and non-covid patients. People coming to the ER get warehoused for hours, even days, forcing ER staffers to perform long-term care roles they weren’t trained to do.

At Sparrow, space is a valuable commodity in the ER: A separate section of the hospital was turned into an overflow unit. Stretchers stack up in halls. A row of brown reclining chairs lines a wall, intended for patients who aren’t sick enough for a stretcher but are too sick to stay in the main waiting room.

Forget privacy, Alejos Perrientoz learned when he arrived. He came to the ER because his arm had been tingling and painful for over a week. He couldn’t hold a cup of coffee. A nurse gave him a full physical exam in a brown recliner, which made him self-conscious about having his shirt lifted in front of strangers. “I felt a little uncomfortable,” he whispered. “But I have no choice, you know? I’m in the hallway. There’s no rooms.

“We could have done the physical in the parking lot,” he added, managing a laugh.

Even patients who arrive by ambulance are not guaranteed a room: One nurse runs triage, screening those who absolutely need a bed, and those who can be put in the waiting area.

“I hate that we even have to make that determination,” MS. Dusang said. Lately, staff members have been pulling out some patients already in the ER’s rooms when others arrive who are more critically ill. “No one likes to take someone out of the privacy of their room and say, ‘We’re going to put you in a hallway because we need to get care to someone else.’”

ER patients have grown sicker

“We are hearing from members in every part of the country,” said Dr. Lisa Moreno, president of the American Academy of Emergency Medicine. “The Midwest, the South, the Northeast, the West … they are seeing this exact same phenomenon.”

Although the number of ER visits returned to pre-COVID levels this summer, admission rates, from the ER to the hospital’s inpatient floors, are still almost 20% higher. That’s according to the most recent analysis by the Epic Health Research Network, which pulls data from more than 120 million patients across the country.

“It’s an early indicator that what’s happening in the ED is that we’re seeing more acute cases than we were pre-pandemic,” said Caleb Cox, a data scientist at Epic.

Less acute cases, such as people with health issues like rashes or conjunctivitis, still aren’t going to the ER as much as they used to. Instead, they may be opting for an urgent care center or their primary care doctor, Mr. Cox explained. Meanwhile, there has been an increase in people coming to the ER with more serious conditions, like strokes and heart attacks.

So, even though the total number of patients coming to ERs is about the same as before the pandemic, “that’s absolutely going to feel like [if I’m an ER doctor or nurse] I’m seeing more patients and I’m seeing more acute patients,” Mr. Cox said.

Dr. Moreno, the AAEM president, works at an emergency department in New Orleans. She said the level of illness, and the inability to admit patients quickly and move them to beds upstairs, has created a level of chaos she described as “not even humane.”

At the beginning of a recent shift, she heard a patient crying nearby and went to investigate. It was a paraplegic man who’d recently had surgery for colon cancer. His large post-operative wound was sealed with a device called a wound vac, which pulls fluid from the wound into a drainage tube attached to a portable vacuum pump.

But the wound vac had malfunctioned, which is why he had come to the ER. Staffers were so busy, however, that by the time Dr. Moreno came in, the fluid from his wound was leaking everywhere.

“When I went in, the bed was covered,” she recalled. “I mean, he was lying in a puddle of secretions from this wound. And he was crying, because he said to me, ‘I’m paralyzed. I can’t move to get away from all these secretions, and I know I’m going to end up getting an infection. I know I’m going to end up getting an ulcer. I’ve been laying in this for, like, eight or nine hours.’”

The nurse in charge of his care told Dr. Moreno she simply hadn’t had time to help this patient yet. “She said, ‘I’ve had so many patients to take care of, and so many critical patients. I started [an IV] drip on this person. This person is on a cardiac monitor. I just didn’t have time to get in there.’”

“This is not humane care,” Dr. Moreno said. “This is horrible care.”

But it’s what can happen when emergency department staffers don’t have the resources they need to deal with the onslaught of competing demands.

“All the nurses and doctors had the highest level of intent to do the right thing for the person,” Dr. Moreno said. “But because of the high acuity of … a large number of patients, the staffing ratio of nurse to patient, even the staffing ratio of doctor to patient, this guy did not get the care that he deserved to get, just as a human being.”

The instance of unintended neglect that Dr. Moreno saw is extreme, and not the experience of most patients who arrive at ERs these days. But the problem is not new: Even before the pandemic, ER overcrowding had been a “widespread problem and a source of patient harm, according to a recent commentary in NEJM Catalyst Innovations in Care Delivery.

“ED crowding is not an issue of inconvenience,” the authors wrote. “There is incontrovertible evidence that ED crowding leads to significant patient harm, including morbidity and mortality related to consequential delays of treatment for both high- and low-acuity patients.”

And already-overwhelmed staffers are burning out.

Burnout feeds staffing shortages, and vice versa

Every morning, Tiffani Dusang wakes up and checks her Sparrow email with one singular hope: that she will not see yet another nurse resignation letter in her inbox.

“I cannot tell you how many of them [the nurses] tell me they went home crying” after their shifts, she said.

Despite Ms. Dusang’s best efforts to support her staffers, they’re leaving too fast to be replaced, either to take higher-paying gigs as a travel nurse, to try a less-stressful type of nursing, or simply walking away from the profession entirely.

Kelly Spitz has been an emergency department nurse at Sparrow for 10 years. But, lately, she has also fantasized about leaving. “It has crossed my mind several times,” she said, and yet she continues to come back. “Because I have a team here. And I love what I do.” But then she started to cry. The issue is not the hard work, or even the stress. She struggles with not being able to give her patients the kind of care and attention she wants to give them, and that they need and deserve, she said.

She often thinks about a patient whose test results revealed terminal cancer, she said. Ms. Spitz spent all day working the phones, hustling case managers, trying to get hospice care set up in the man’s home. He was going to die, and she just didn’t want him to have to die in the hospital, where only one visitor was allowed. She wanted to get him home, and back with his family.

Finally, after many hours, they found an ambulance to take him home.

Three days later, the man’s family members called Ms. Spitz: He had died surrounded by family. They were calling to thank her.

“I felt like I did my job there, because I got him home,” she said. But that’s a rare feeling these days. “I just hope it gets better. I hope it gets better soon.”

Around 4 p.m. at Sparrow Hospital as one shift approached its end, Ms. Dusang faced a new crisis: The overnight shift was more short-staffed than usual.

“Can we get two inpatient nurses?” she asked, hoping to borrow two nurses from one of the hospital floors upstairs.

“Already tried,” replied nurse Troy Latunski.

Without more staff, it’s going to be hard to care for new patients who come in overnight — from car crashes to seizures or other emergencies.

But Mr. Latunski had a plan: He would go home, snatch a few hours of sleep and return at 11 p.m. to work the overnight shift in the ER’s overflow unit. That meant he would be largely caring for eight patients, alone. On just a few short hours of sleep. But lately that seemed to be their only, and best, option.

Ms. Dusang considered for a moment, took a deep breath and nodded. “OK,” she said.

“Go home. Get some sleep. Thank you,” she added, shooting Mr. Latunski a grateful smile. And then she pivoted, because another nurse was approaching with an urgent question. On to the next crisis.

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

Inside the emergency department at Sparrow Hospital in Lansing, Mich., staff members are struggling to care for patients showing up much sicker than they’ve ever seen.

Tiffani Dusang, the ER’s nursing director, practically vibrates with pent-up anxiety, looking at patients lying on a long line of stretchers pushed up against the beige walls of the hospital hallways. “It’s hard to watch,” she said in a warm Texas twang.

But there’s nothing she can do. The ER’s 72 rooms are already filled.

“I always feel very, very bad when I walk down the hallway and see that people are in pain, or needing to sleep, or needing quiet. But they have to be in the hallway with, as you can see, 10 or 15 people walking by every minute,” Ms. Dusang said.

The scene is a stark contrast to where this emergency department — and thousands of others — were at the start of the pandemic. Except for initial hot spots like New York City, in spring 2020 many ERs across the country were often eerily empty. Terrified of contracting COVID-19, people who were sick with other things did their best to stay away from hospitals. Visits to emergency rooms dropped to half their typical levels, according to the Epic Health Research Network, and didn’t fully rebound until this summer.

But now, they’re too full. Even in parts of the country where covid isn’t overwhelming the health system, patients are showing up to the ER sicker than before the pandemic, their diseases more advanced and in need of more complicated care.

Months of treatment delays have exacerbated chronic conditions and worsened symptoms. Doctors and nurses say the severity of illness ranges widely and includes abdominal pain, respiratory problems, blood clots, heart conditions and suicide attempts, among other conditions.

But they can hardly be accommodated. Emergency departments, ideally, are meant to be brief ports in a storm, with patients staying just long enough to be sent home with instructions to follow up with primary care physicians, or sufficiently stabilized to be transferred “upstairs” to inpatient or intensive care units.

Except now those long-term care floors are full too, with a mix of covid and non-covid patients. People coming to the ER get warehoused for hours, even days, forcing ER staffers to perform long-term care roles they weren’t trained to do.

At Sparrow, space is a valuable commodity in the ER: A separate section of the hospital was turned into an overflow unit. Stretchers stack up in halls. A row of brown reclining chairs lines a wall, intended for patients who aren’t sick enough for a stretcher but are too sick to stay in the main waiting room.

Forget privacy, Alejos Perrientoz learned when he arrived. He came to the ER because his arm had been tingling and painful for over a week. He couldn’t hold a cup of coffee. A nurse gave him a full physical exam in a brown recliner, which made him self-conscious about having his shirt lifted in front of strangers. “I felt a little uncomfortable,” he whispered. “But I have no choice, you know? I’m in the hallway. There’s no rooms.

“We could have done the physical in the parking lot,” he added, managing a laugh.

Even patients who arrive by ambulance are not guaranteed a room: One nurse runs triage, screening those who absolutely need a bed, and those who can be put in the waiting area.

“I hate that we even have to make that determination,” MS. Dusang said. Lately, staff members have been pulling out some patients already in the ER’s rooms when others arrive who are more critically ill. “No one likes to take someone out of the privacy of their room and say, ‘We’re going to put you in a hallway because we need to get care to someone else.’”

ER patients have grown sicker

“We are hearing from members in every part of the country,” said Dr. Lisa Moreno, president of the American Academy of Emergency Medicine. “The Midwest, the South, the Northeast, the West … they are seeing this exact same phenomenon.”

Although the number of ER visits returned to pre-COVID levels this summer, admission rates, from the ER to the hospital’s inpatient floors, are still almost 20% higher. That’s according to the most recent analysis by the Epic Health Research Network, which pulls data from more than 120 million patients across the country.

“It’s an early indicator that what’s happening in the ED is that we’re seeing more acute cases than we were pre-pandemic,” said Caleb Cox, a data scientist at Epic.

Less acute cases, such as people with health issues like rashes or conjunctivitis, still aren’t going to the ER as much as they used to. Instead, they may be opting for an urgent care center or their primary care doctor, Mr. Cox explained. Meanwhile, there has been an increase in people coming to the ER with more serious conditions, like strokes and heart attacks.

So, even though the total number of patients coming to ERs is about the same as before the pandemic, “that’s absolutely going to feel like [if I’m an ER doctor or nurse] I’m seeing more patients and I’m seeing more acute patients,” Mr. Cox said.

Dr. Moreno, the AAEM president, works at an emergency department in New Orleans. She said the level of illness, and the inability to admit patients quickly and move them to beds upstairs, has created a level of chaos she described as “not even humane.”

At the beginning of a recent shift, she heard a patient crying nearby and went to investigate. It was a paraplegic man who’d recently had surgery for colon cancer. His large post-operative wound was sealed with a device called a wound vac, which pulls fluid from the wound into a drainage tube attached to a portable vacuum pump.

But the wound vac had malfunctioned, which is why he had come to the ER. Staffers were so busy, however, that by the time Dr. Moreno came in, the fluid from his wound was leaking everywhere.

“When I went in, the bed was covered,” she recalled. “I mean, he was lying in a puddle of secretions from this wound. And he was crying, because he said to me, ‘I’m paralyzed. I can’t move to get away from all these secretions, and I know I’m going to end up getting an infection. I know I’m going to end up getting an ulcer. I’ve been laying in this for, like, eight or nine hours.’”

The nurse in charge of his care told Dr. Moreno she simply hadn’t had time to help this patient yet. “She said, ‘I’ve had so many patients to take care of, and so many critical patients. I started [an IV] drip on this person. This person is on a cardiac monitor. I just didn’t have time to get in there.’”

“This is not humane care,” Dr. Moreno said. “This is horrible care.”

But it’s what can happen when emergency department staffers don’t have the resources they need to deal with the onslaught of competing demands.

“All the nurses and doctors had the highest level of intent to do the right thing for the person,” Dr. Moreno said. “But because of the high acuity of … a large number of patients, the staffing ratio of nurse to patient, even the staffing ratio of doctor to patient, this guy did not get the care that he deserved to get, just as a human being.”

The instance of unintended neglect that Dr. Moreno saw is extreme, and not the experience of most patients who arrive at ERs these days. But the problem is not new: Even before the pandemic, ER overcrowding had been a “widespread problem and a source of patient harm, according to a recent commentary in NEJM Catalyst Innovations in Care Delivery.

“ED crowding is not an issue of inconvenience,” the authors wrote. “There is incontrovertible evidence that ED crowding leads to significant patient harm, including morbidity and mortality related to consequential delays of treatment for both high- and low-acuity patients.”

And already-overwhelmed staffers are burning out.

Burnout feeds staffing shortages, and vice versa

Every morning, Tiffani Dusang wakes up and checks her Sparrow email with one singular hope: that she will not see yet another nurse resignation letter in her inbox.

“I cannot tell you how many of them [the nurses] tell me they went home crying” after their shifts, she said.

Despite Ms. Dusang’s best efforts to support her staffers, they’re leaving too fast to be replaced, either to take higher-paying gigs as a travel nurse, to try a less-stressful type of nursing, or simply walking away from the profession entirely.

Kelly Spitz has been an emergency department nurse at Sparrow for 10 years. But, lately, she has also fantasized about leaving. “It has crossed my mind several times,” she said, and yet she continues to come back. “Because I have a team here. And I love what I do.” But then she started to cry. The issue is not the hard work, or even the stress. She struggles with not being able to give her patients the kind of care and attention she wants to give them, and that they need and deserve, she said.

She often thinks about a patient whose test results revealed terminal cancer, she said. Ms. Spitz spent all day working the phones, hustling case managers, trying to get hospice care set up in the man’s home. He was going to die, and she just didn’t want him to have to die in the hospital, where only one visitor was allowed. She wanted to get him home, and back with his family.

Finally, after many hours, they found an ambulance to take him home.

Three days later, the man’s family members called Ms. Spitz: He had died surrounded by family. They were calling to thank her.

“I felt like I did my job there, because I got him home,” she said. But that’s a rare feeling these days. “I just hope it gets better. I hope it gets better soon.”

Around 4 p.m. at Sparrow Hospital as one shift approached its end, Ms. Dusang faced a new crisis: The overnight shift was more short-staffed than usual.

“Can we get two inpatient nurses?” she asked, hoping to borrow two nurses from one of the hospital floors upstairs.

“Already tried,” replied nurse Troy Latunski.

Without more staff, it’s going to be hard to care for new patients who come in overnight — from car crashes to seizures or other emergencies.

But Mr. Latunski had a plan: He would go home, snatch a few hours of sleep and return at 11 p.m. to work the overnight shift in the ER’s overflow unit. That meant he would be largely caring for eight patients, alone. On just a few short hours of sleep. But lately that seemed to be their only, and best, option.

Ms. Dusang considered for a moment, took a deep breath and nodded. “OK,” she said.

“Go home. Get some sleep. Thank you,” she added, shooting Mr. Latunski a grateful smile. And then she pivoted, because another nurse was approaching with an urgent question. On to the next crisis.

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

Almost all physicians write prescriptions, and each prescription requires a physician to assess the risks and benefits of the drug. If an adverse drug reaction occurs, physicians may be called on to defend their risk-benefit assessment in court.

The assessment of risk is complicated when there is a boxed warning that describes potentially serious and life-threatening adverse reactions associated with a drug. Some of our most commonly prescribed drugs have boxed warnings, and drugs that were initially approved by the Food and Drug Administration without boxed warnings may have them added years later.

One serious problem with boxed warnings is that there are no reliable mechanisms for making sure that physicians are aware of them. The warnings are typically not seen by physicians as printed product labels, just as physicians often don’t see the pills and capsules that they prescribe. Pharmacists who receive packaged drugs from manufacturers may be the only ones to see an actual printed boxed warning, but even those pharmacists have little reason to read each label and note changes when handling many bulk packages.

This problem is aggravated by misperceptions that many physicians have about boxed warnings and the increasingly intense scrutiny given to them by mass media and the courts. Lawyers can use boxed warnings to make a drug look dangerous, even when it’s not, and to make physicians look reckless when prescribing it. Therefore, it is important for physicians to understand what boxed warnings are, what they are not, the problems they cause, and how to minimize these problems.
 

What is a ‘boxed warning’?

The marketing and sale of drugs in the United States requires approval by the FDA. Approval requires manufacturers to prepare a document containing “Full Prescribing Information” for the drug and to include a printed copy in every package of the drug that is sold. This document is commonly called a “package insert,” but the FDA designates this document as the manufacturer’s product “label.”

In 1979, the FDA began requiring some labels to appear within thick, black rectangular borders; these have come to be known as boxed warnings. Boxed warnings are usually placed at the beginning of a label. They may be added to the label of a previously approved drug already on the market or included in the product label when first approved and marketed.

The requirement for a boxed warning most often arises when a signal appears during review of postmarketing surveillance data suggesting a possible and plausible association between a drug and an adverse reaction. Warnings may also be initiated in response to petitions from public interest groups, or upon the discovery of serious toxicity in animals. Regardless of their origin, the intent of a boxed warning is to highlight information that may have important therapeutic consequences and warrants heightened awareness among physicians.
 

What a boxed warning is not

A boxed warning is not “issued” by the FDA; it is merely required by the FDA. Specific wording or a template may be suggested by the FDA, but product labels and boxed warnings are written and issued by the manufacturer. This distinction may seem minor, but extensive litigation has occurred over whether manufacturers have met their duty to warn consumers about possible risks when using their products, and this duty cannot be shifted to the FDA.

A boxed warning may not be added to a product label at the option of a manufacturer. The FDA allows a boxed warning only if it requires the warning, to preserve its impact. It should be noted that some medical information sources (e.g., PDR.net) may include a “BOXED WARNING” in their drug monographs, but monographs not written by a manufacturer are not regulated by the FDA, and the text of their boxed warnings do not always correspond to the boxed warning that was approved by the FDA.

A boxed warning is not an indication that revocation of FDA approval is being considered or that it is likely to be revoked. FDA approval is subject to ongoing review and may be revoked at any time, without a prior boxed warning.

A boxed warning is not the highest level of warning. The FDA may require a manufacturer to send out a “Dear Health Care Provider” (DHCP) letter when an even higher or more urgent level of warning is deemed necessary. DHCP letters are usually accompanied by revisions of the product label, but most label revisions – and even most boxed warnings – are not accompanied by DHCP letters.

A boxed warning is not a statement about causation. Most warnings describe an “association” between a drug and an adverse effect, or “increased risk,” or instances of a particular adverse effect that “have been reported” in persons taking a drug. The words in a boxed warning are carefully chosen and require careful reading; in most cases they refrain from stating that a drug actually causes an adverse effect. The postmarketing surveillance data on which most warnings are based generally cannot provide the kind of evidence required to establish causation, and an association may be nothing more than an uncommon manifestation of the disorder for which the drug has been prescribed.

A boxed warning is not a statement about the probability of an adverse reaction occurring. The requirement for a boxed warning correlates better to the new recognition of a possible association than to the probability of an association. For example, penicillin has long been known to cause fatal anaphylaxis in 1/100,000 first-time administrations, but it does not have a boxed warning. The adverse consequences described in boxed warnings are often far less frequent – so much so that most physicians will never see them.

A boxed warning does not define the standard of care. The warning is a requirement imposed on the manufacturer, not on the practice of medicine. For legal purposes, the “standard of care” for the practice of medicine is defined state by state and is typically cast in terms such as “what most physicians would do in similar circumstances.” Physicians often prescribe drugs in spite of boxed warnings, just as they often prescribe drugs for “off label” indications, always balancing risk versus benefit.

A boxed warning does not constitute a contraindication to the use of a medication. Some warnings state that a drug is contraindicated in some situations, but product labels have another mandated section for listing contraindications, and most boxed warnings have no corresponding entry in that section.

A boxed warning does not necessarily constitute current information, nor is it always updated when new or contrary information becomes available. Revisions to boxed warnings, and to product labels in general, are made only after detailed review at the FDA, and the process of deciding whether an existing boxed warning continues to be appropriate may divert limited regulatory resources from more urgent priorities. Consequently, revisions to a boxed warning may lag behind the data that justify a revision by months or years. Revisions may never occur if softening or eliminating a boxed warning is deemed to be not worth the cost by a manufacturer.
 

Boxed warning problems for physicians

There is no reliable mechanism for manufacturers or the FDA to communicate boxed warnings directly to physicians, so it’s not clear how physicians are expected to stay informed about the issuance or revision of boxed warnings. They may first learn about new or revised warnings in the mass media, which is paying ever-increasing attention to press releases from the FDA. However, it can be difficult for the media to accurately convey the subtle and complex nature of a boxed warning in nontechnical terms.

Many physicians subscribe to various medical news alerts and attend continuing medical education (CME) programs, which often do an excellent job of highlighting new warnings, while hospitals, clinics, and pharmacies may broadcast news about boxed warnings in newsletters or other notices. But these notifications are ephemeral and may be missed by physicians who are overwhelmed by email, notices, newsletters, and CME programs.

The warnings that pop up in electronic medical records systems are often so numerous that physicians become trained to ignore them. Printed advertisements in professional journals must include mandated boxed warnings, but their visibility is waning as physicians increasingly read journals online.

Another conundrum is how to inform the public about boxed warnings.

Manufacturers are prohibited from direct-to-consumer advertising of drugs with boxed warnings, although the warnings are easily found on the Internet. Some patients expect and welcome detailed information from their physicians, so it’s a good policy to always and repeatedly review this information with them, especially if they are members of an identified risk group. However, that policy may be counterproductive if it dissuades anxious patients from needed therapy despite risk-benefit considerations that strongly favor it. Boxed warnings are well known to have “spillover effects” in which the aspersions cast by a boxed warning for a relatively small subgroup of patients causes use of a drug to decline among all patients.

Compounding this conundrum is that physicians rarely have sufficient information to gauge the magnitude of a risk, given that boxed warnings are often based on information from surveillance systems that cannot accurately quantify the risk or even establish a causal relationship. The text of a boxed warning generally does not provide the information needed for evidence-based clinical practice such as a quantitative estimate of effect, information about source and trustworthiness of the evidence, and guidance on implementation. For these and other reasons, FDA policies about various boxed warnings have been the target of significant criticism.

Medication guides are one mechanism to address the challenge of informing patients about the risks of drugs they are taking. FDA-approved medication guides are available for most drugs dispensed as outpatient prescriptions, they’re written in plain language for the consumer, and they include paraphrased versions of any boxed warning. Ideally, patients review these guides with their physicians or pharmacists, but the guides may be lengthy and raise questions that may not be answerable (e.g., about incidence rates). Patients may decline to review this information when a drug is prescribed or dispensed, and they may discard printed copies given to them without reading.
 

What can physicians do to minimize boxed warning problems?

Physicians should periodically review the product labels for drugs they commonly prescribe, including drugs they’ve prescribed for a long time. Prescription renewal requests can be used as a prompt to check for changes in a patient’s condition or other medications that might place a patient in the target population of a boxed warning. Physicians can subscribe to newsletters that announce and discuss significant product label changes, including alerts directly from the FDA. Physicians may also enlist their office staff to find and review boxed warnings for drugs being prescribed, noting which ones should require a conversation with any patient who has been or will be receiving this drug. They may want to make explicit mention in their encounter record that a boxed warning, medication guide, or overall risk-benefit assessment has been discussed.

Summary

The nature of boxed warnings, the means by which they are disseminated, and their role in clinical practice are all in great need of improvement. Until that occurs, boxed warnings offer some, but only very limited, help to patients and physicians who struggle to understand the risks of medications.

Dr. Axelsen is professor in the departments of pharmacology, biochemistry, and biophysics, and of medicine, infectious diseases section, University of Pennsylvania, Philadelphia. He disclosed no relevant financial relationships. A version of this article first appeared on Medscape.com.

Almost all physicians write prescriptions, and each prescription requires a physician to assess the risks and benefits of the drug. If an adverse drug reaction occurs, physicians may be called on to defend their risk-benefit assessment in court.

The assessment of risk is complicated when there is a boxed warning that describes potentially serious and life-threatening adverse reactions associated with a drug. Some of our most commonly prescribed drugs have boxed warnings, and drugs that were initially approved by the Food and Drug Administration without boxed warnings may have them added years later.

One serious problem with boxed warnings is that there are no reliable mechanisms for making sure that physicians are aware of them. The warnings are typically not seen by physicians as printed product labels, just as physicians often don’t see the pills and capsules that they prescribe. Pharmacists who receive packaged drugs from manufacturers may be the only ones to see an actual printed boxed warning, but even those pharmacists have little reason to read each label and note changes when handling many bulk packages.

This problem is aggravated by misperceptions that many physicians have about boxed warnings and the increasingly intense scrutiny given to them by mass media and the courts. Lawyers can use boxed warnings to make a drug look dangerous, even when it’s not, and to make physicians look reckless when prescribing it. Therefore, it is important for physicians to understand what boxed warnings are, what they are not, the problems they cause, and how to minimize these problems.
 

What is a ‘boxed warning’?

The marketing and sale of drugs in the United States requires approval by the FDA. Approval requires manufacturers to prepare a document containing “Full Prescribing Information” for the drug and to include a printed copy in every package of the drug that is sold. This document is commonly called a “package insert,” but the FDA designates this document as the manufacturer’s product “label.”

In 1979, the FDA began requiring some labels to appear within thick, black rectangular borders; these have come to be known as boxed warnings. Boxed warnings are usually placed at the beginning of a label. They may be added to the label of a previously approved drug already on the market or included in the product label when first approved and marketed.

The requirement for a boxed warning most often arises when a signal appears during review of postmarketing surveillance data suggesting a possible and plausible association between a drug and an adverse reaction. Warnings may also be initiated in response to petitions from public interest groups, or upon the discovery of serious toxicity in animals. Regardless of their origin, the intent of a boxed warning is to highlight information that may have important therapeutic consequences and warrants heightened awareness among physicians.
 

What a boxed warning is not

A boxed warning is not “issued” by the FDA; it is merely required by the FDA. Specific wording or a template may be suggested by the FDA, but product labels and boxed warnings are written and issued by the manufacturer. This distinction may seem minor, but extensive litigation has occurred over whether manufacturers have met their duty to warn consumers about possible risks when using their products, and this duty cannot be shifted to the FDA.

A boxed warning may not be added to a product label at the option of a manufacturer. The FDA allows a boxed warning only if it requires the warning, to preserve its impact. It should be noted that some medical information sources (e.g., PDR.net) may include a “BOXED WARNING” in their drug monographs, but monographs not written by a manufacturer are not regulated by the FDA, and the text of their boxed warnings do not always correspond to the boxed warning that was approved by the FDA.

A boxed warning is not an indication that revocation of FDA approval is being considered or that it is likely to be revoked. FDA approval is subject to ongoing review and may be revoked at any time, without a prior boxed warning.

A boxed warning is not the highest level of warning. The FDA may require a manufacturer to send out a “Dear Health Care Provider” (DHCP) letter when an even higher or more urgent level of warning is deemed necessary. DHCP letters are usually accompanied by revisions of the product label, but most label revisions – and even most boxed warnings – are not accompanied by DHCP letters.

A boxed warning is not a statement about causation. Most warnings describe an “association” between a drug and an adverse effect, or “increased risk,” or instances of a particular adverse effect that “have been reported” in persons taking a drug. The words in a boxed warning are carefully chosen and require careful reading; in most cases they refrain from stating that a drug actually causes an adverse effect. The postmarketing surveillance data on which most warnings are based generally cannot provide the kind of evidence required to establish causation, and an association may be nothing more than an uncommon manifestation of the disorder for which the drug has been prescribed.

A boxed warning is not a statement about the probability of an adverse reaction occurring. The requirement for a boxed warning correlates better to the new recognition of a possible association than to the probability of an association. For example, penicillin has long been known to cause fatal anaphylaxis in 1/100,000 first-time administrations, but it does not have a boxed warning. The adverse consequences described in boxed warnings are often far less frequent – so much so that most physicians will never see them.

A boxed warning does not define the standard of care. The warning is a requirement imposed on the manufacturer, not on the practice of medicine. For legal purposes, the “standard of care” for the practice of medicine is defined state by state and is typically cast in terms such as “what most physicians would do in similar circumstances.” Physicians often prescribe drugs in spite of boxed warnings, just as they often prescribe drugs for “off label” indications, always balancing risk versus benefit.

A boxed warning does not constitute a contraindication to the use of a medication. Some warnings state that a drug is contraindicated in some situations, but product labels have another mandated section for listing contraindications, and most boxed warnings have no corresponding entry in that section.

A boxed warning does not necessarily constitute current information, nor is it always updated when new or contrary information becomes available. Revisions to boxed warnings, and to product labels in general, are made only after detailed review at the FDA, and the process of deciding whether an existing boxed warning continues to be appropriate may divert limited regulatory resources from more urgent priorities. Consequently, revisions to a boxed warning may lag behind the data that justify a revision by months or years. Revisions may never occur if softening or eliminating a boxed warning is deemed to be not worth the cost by a manufacturer.
 

Boxed warning problems for physicians

There is no reliable mechanism for manufacturers or the FDA to communicate boxed warnings directly to physicians, so it’s not clear how physicians are expected to stay informed about the issuance or revision of boxed warnings. They may first learn about new or revised warnings in the mass media, which is paying ever-increasing attention to press releases from the FDA. However, it can be difficult for the media to accurately convey the subtle and complex nature of a boxed warning in nontechnical terms.

Many physicians subscribe to various medical news alerts and attend continuing medical education (CME) programs, which often do an excellent job of highlighting new warnings, while hospitals, clinics, and pharmacies may broadcast news about boxed warnings in newsletters or other notices. But these notifications are ephemeral and may be missed by physicians who are overwhelmed by email, notices, newsletters, and CME programs.

The warnings that pop up in electronic medical records systems are often so numerous that physicians become trained to ignore them. Printed advertisements in professional journals must include mandated boxed warnings, but their visibility is waning as physicians increasingly read journals online.

Another conundrum is how to inform the public about boxed warnings.

Manufacturers are prohibited from direct-to-consumer advertising of drugs with boxed warnings, although the warnings are easily found on the Internet. Some patients expect and welcome detailed information from their physicians, so it’s a good policy to always and repeatedly review this information with them, especially if they are members of an identified risk group. However, that policy may be counterproductive if it dissuades anxious patients from needed therapy despite risk-benefit considerations that strongly favor it. Boxed warnings are well known to have “spillover effects” in which the aspersions cast by a boxed warning for a relatively small subgroup of patients causes use of a drug to decline among all patients.

Compounding this conundrum is that physicians rarely have sufficient information to gauge the magnitude of a risk, given that boxed warnings are often based on information from surveillance systems that cannot accurately quantify the risk or even establish a causal relationship. The text of a boxed warning generally does not provide the information needed for evidence-based clinical practice such as a quantitative estimate of effect, information about source and trustworthiness of the evidence, and guidance on implementation. For these and other reasons, FDA policies about various boxed warnings have been the target of significant criticism.

Medication guides are one mechanism to address the challenge of informing patients about the risks of drugs they are taking. FDA-approved medication guides are available for most drugs dispensed as outpatient prescriptions, they’re written in plain language for the consumer, and they include paraphrased versions of any boxed warning. Ideally, patients review these guides with their physicians or pharmacists, but the guides may be lengthy and raise questions that may not be answerable (e.g., about incidence rates). Patients may decline to review this information when a drug is prescribed or dispensed, and they may discard printed copies given to them without reading.
 

What can physicians do to minimize boxed warning problems?

Physicians should periodically review the product labels for drugs they commonly prescribe, including drugs they’ve prescribed for a long time. Prescription renewal requests can be used as a prompt to check for changes in a patient’s condition or other medications that might place a patient in the target population of a boxed warning. Physicians can subscribe to newsletters that announce and discuss significant product label changes, including alerts directly from the FDA. Physicians may also enlist their office staff to find and review boxed warnings for drugs being prescribed, noting which ones should require a conversation with any patient who has been or will be receiving this drug. They may want to make explicit mention in their encounter record that a boxed warning, medication guide, or overall risk-benefit assessment has been discussed.

Summary

The nature of boxed warnings, the means by which they are disseminated, and their role in clinical practice are all in great need of improvement. Until that occurs, boxed warnings offer some, but only very limited, help to patients and physicians who struggle to understand the risks of medications.

Dr. Axelsen is professor in the departments of pharmacology, biochemistry, and biophysics, and of medicine, infectious diseases section, University of Pennsylvania, Philadelphia. He disclosed no relevant financial relationships. A version of this article first appeared on Medscape.com.

Almost all physicians write prescriptions, and each prescription requires a physician to assess the risks and benefits of the drug. If an adverse drug reaction occurs, physicians may be called on to defend their risk-benefit assessment in court.

The assessment of risk is complicated when there is a boxed warning that describes potentially serious and life-threatening adverse reactions associated with a drug. Some of our most commonly prescribed drugs have boxed warnings, and drugs that were initially approved by the Food and Drug Administration without boxed warnings may have them added years later.

One serious problem with boxed warnings is that there are no reliable mechanisms for making sure that physicians are aware of them. The warnings are typically not seen by physicians as printed product labels, just as physicians often don’t see the pills and capsules that they prescribe. Pharmacists who receive packaged drugs from manufacturers may be the only ones to see an actual printed boxed warning, but even those pharmacists have little reason to read each label and note changes when handling many bulk packages.

This problem is aggravated by misperceptions that many physicians have about boxed warnings and the increasingly intense scrutiny given to them by mass media and the courts. Lawyers can use boxed warnings to make a drug look dangerous, even when it’s not, and to make physicians look reckless when prescribing it. Therefore, it is important for physicians to understand what boxed warnings are, what they are not, the problems they cause, and how to minimize these problems.
 

What is a ‘boxed warning’?

The marketing and sale of drugs in the United States requires approval by the FDA. Approval requires manufacturers to prepare a document containing “Full Prescribing Information” for the drug and to include a printed copy in every package of the drug that is sold. This document is commonly called a “package insert,” but the FDA designates this document as the manufacturer’s product “label.”

In 1979, the FDA began requiring some labels to appear within thick, black rectangular borders; these have come to be known as boxed warnings. Boxed warnings are usually placed at the beginning of a label. They may be added to the label of a previously approved drug already on the market or included in the product label when first approved and marketed.

The requirement for a boxed warning most often arises when a signal appears during review of postmarketing surveillance data suggesting a possible and plausible association between a drug and an adverse reaction. Warnings may also be initiated in response to petitions from public interest groups, or upon the discovery of serious toxicity in animals. Regardless of their origin, the intent of a boxed warning is to highlight information that may have important therapeutic consequences and warrants heightened awareness among physicians.
 

What a boxed warning is not

A boxed warning is not “issued” by the FDA; it is merely required by the FDA. Specific wording or a template may be suggested by the FDA, but product labels and boxed warnings are written and issued by the manufacturer. This distinction may seem minor, but extensive litigation has occurred over whether manufacturers have met their duty to warn consumers about possible risks when using their products, and this duty cannot be shifted to the FDA.

A boxed warning may not be added to a product label at the option of a manufacturer. The FDA allows a boxed warning only if it requires the warning, to preserve its impact. It should be noted that some medical information sources (e.g., PDR.net) may include a “BOXED WARNING” in their drug monographs, but monographs not written by a manufacturer are not regulated by the FDA, and the text of their boxed warnings do not always correspond to the boxed warning that was approved by the FDA.

A boxed warning is not an indication that revocation of FDA approval is being considered or that it is likely to be revoked. FDA approval is subject to ongoing review and may be revoked at any time, without a prior boxed warning.

A boxed warning is not the highest level of warning. The FDA may require a manufacturer to send out a “Dear Health Care Provider” (DHCP) letter when an even higher or more urgent level of warning is deemed necessary. DHCP letters are usually accompanied by revisions of the product label, but most label revisions – and even most boxed warnings – are not accompanied by DHCP letters.

A boxed warning is not a statement about causation. Most warnings describe an “association” between a drug and an adverse effect, or “increased risk,” or instances of a particular adverse effect that “have been reported” in persons taking a drug. The words in a boxed warning are carefully chosen and require careful reading; in most cases they refrain from stating that a drug actually causes an adverse effect. The postmarketing surveillance data on which most warnings are based generally cannot provide the kind of evidence required to establish causation, and an association may be nothing more than an uncommon manifestation of the disorder for which the drug has been prescribed.

A boxed warning is not a statement about the probability of an adverse reaction occurring. The requirement for a boxed warning correlates better to the new recognition of a possible association than to the probability of an association. For example, penicillin has long been known to cause fatal anaphylaxis in 1/100,000 first-time administrations, but it does not have a boxed warning. The adverse consequences described in boxed warnings are often far less frequent – so much so that most physicians will never see them.

A boxed warning does not define the standard of care. The warning is a requirement imposed on the manufacturer, not on the practice of medicine. For legal purposes, the “standard of care” for the practice of medicine is defined state by state and is typically cast in terms such as “what most physicians would do in similar circumstances.” Physicians often prescribe drugs in spite of boxed warnings, just as they often prescribe drugs for “off label” indications, always balancing risk versus benefit.

A boxed warning does not constitute a contraindication to the use of a medication. Some warnings state that a drug is contraindicated in some situations, but product labels have another mandated section for listing contraindications, and most boxed warnings have no corresponding entry in that section.

A boxed warning does not necessarily constitute current information, nor is it always updated when new or contrary information becomes available. Revisions to boxed warnings, and to product labels in general, are made only after detailed review at the FDA, and the process of deciding whether an existing boxed warning continues to be appropriate may divert limited regulatory resources from more urgent priorities. Consequently, revisions to a boxed warning may lag behind the data that justify a revision by months or years. Revisions may never occur if softening or eliminating a boxed warning is deemed to be not worth the cost by a manufacturer.
 

Boxed warning problems for physicians

There is no reliable mechanism for manufacturers or the FDA to communicate boxed warnings directly to physicians, so it’s not clear how physicians are expected to stay informed about the issuance or revision of boxed warnings. They may first learn about new or revised warnings in the mass media, which is paying ever-increasing attention to press releases from the FDA. However, it can be difficult for the media to accurately convey the subtle and complex nature of a boxed warning in nontechnical terms.

Many physicians subscribe to various medical news alerts and attend continuing medical education (CME) programs, which often do an excellent job of highlighting new warnings, while hospitals, clinics, and pharmacies may broadcast news about boxed warnings in newsletters or other notices. But these notifications are ephemeral and may be missed by physicians who are overwhelmed by email, notices, newsletters, and CME programs.

The warnings that pop up in electronic medical records systems are often so numerous that physicians become trained to ignore them. Printed advertisements in professional journals must include mandated boxed warnings, but their visibility is waning as physicians increasingly read journals online.

Another conundrum is how to inform the public about boxed warnings.

Manufacturers are prohibited from direct-to-consumer advertising of drugs with boxed warnings, although the warnings are easily found on the Internet. Some patients expect and welcome detailed information from their physicians, so it’s a good policy to always and repeatedly review this information with them, especially if they are members of an identified risk group. However, that policy may be counterproductive if it dissuades anxious patients from needed therapy despite risk-benefit considerations that strongly favor it. Boxed warnings are well known to have “spillover effects” in which the aspersions cast by a boxed warning for a relatively small subgroup of patients causes use of a drug to decline among all patients.

Compounding this conundrum is that physicians rarely have sufficient information to gauge the magnitude of a risk, given that boxed warnings are often based on information from surveillance systems that cannot accurately quantify the risk or even establish a causal relationship. The text of a boxed warning generally does not provide the information needed for evidence-based clinical practice such as a quantitative estimate of effect, information about source and trustworthiness of the evidence, and guidance on implementation. For these and other reasons, FDA policies about various boxed warnings have been the target of significant criticism.

Medication guides are one mechanism to address the challenge of informing patients about the risks of drugs they are taking. FDA-approved medication guides are available for most drugs dispensed as outpatient prescriptions, they’re written in plain language for the consumer, and they include paraphrased versions of any boxed warning. Ideally, patients review these guides with their physicians or pharmacists, but the guides may be lengthy and raise questions that may not be answerable (e.g., about incidence rates). Patients may decline to review this information when a drug is prescribed or dispensed, and they may discard printed copies given to them without reading.
 

What can physicians do to minimize boxed warning problems?

Physicians should periodically review the product labels for drugs they commonly prescribe, including drugs they’ve prescribed for a long time. Prescription renewal requests can be used as a prompt to check for changes in a patient’s condition or other medications that might place a patient in the target population of a boxed warning. Physicians can subscribe to newsletters that announce and discuss significant product label changes, including alerts directly from the FDA. Physicians may also enlist their office staff to find and review boxed warnings for drugs being prescribed, noting which ones should require a conversation with any patient who has been or will be receiving this drug. They may want to make explicit mention in their encounter record that a boxed warning, medication guide, or overall risk-benefit assessment has been discussed.

Summary

The nature of boxed warnings, the means by which they are disseminated, and their role in clinical practice are all in great need of improvement. Until that occurs, boxed warnings offer some, but only very limited, help to patients and physicians who struggle to understand the risks of medications.

Dr. Axelsen is professor in the departments of pharmacology, biochemistry, and biophysics, and of medicine, infectious diseases section, University of Pennsylvania, Philadelphia. He disclosed no relevant financial relationships. A version of this article first appeared on Medscape.com.

Nearly two-thirds of Americans are not confident that they understood their doctor’s recommendations and the health information they discussed with their doctor after a visit, according to a new survey.

Confusion over health information and doctor advice is even higher among people who care for patients than among those who don’t provide care to their loved ones, the nationally representative survey from the AHIMA Foundation found.

The survey also shows that 80% of Americans – and an even higher portion of caregivers – are likely to research medical recommendations online after a doctor’s visit. But 1 in 4 people don’t know how to access their own medical records or find it difficult to do so.

The findings reflect the same low level of health literacy in the U.S. population that earlier surveys did. The results also indicate that little has changed since the Department of Health and Human Services released a National Action Plan to Improve Health Literacy in 2010.

That plan emphasized the need to develop and share accurate health information that helps people make decisions; to promote changes in the health care system that improve health information, communication, informed decision-making, and access to health services; and to increase the sharing and use of evidence-based health literacy practices.

According to the AHIMA Foundation report, 62% of Americans are not sure they understand their doctor’s advice and the health information discussed during a visit. Twenty-four percent say they don’t comprehend any of it, and 31% can’t remember what was said during the visit. Fifteen percent of those surveyed said they were more confused about their health than they were before the encounter with their doctor.
 

Caregivers have special issues

Forty-three percent of Americans are caregivers, the report notes, and 91% of those play an active role in managing someone else’s health. Millennials (65%) and Gen Xers (50%) are significantly more likely than Gen Zers (39%) and Boomers (20%) to be a caregiver.

Most caregivers have concerns about their loved ones’ ability to manage their own health. Most of them believe that doctors provide enough information, but 38% don’t believe a doctor can communicate effectively with the patient if the caregiver is not present.

Forty-three percent of caretakers don’t think their loved ones can understand medical information on their own. On the other hand, caregivers are more likely than people who don’t provide care to say the doctor confused them and to research the doctor’s advice after an appointment.

For many patients and caregivers, communications break down when they are with their health care provider. Twenty-two percent of Americans say they do not feel comfortable asking their doctor certain health questions. This inability to have a satisfactory dialogue with their doctor means that many patients leave their appointments without getting clear answers to their questions (24%) or without having an opportunity to ask any questions at all (17%).

This is not surprising, considering that a 2018 study found that doctors spend only 11 seconds, on average, listening to patients before interrupting them.
 

Depending on the internet

Overall, the AHIMA survey found, 42% of Americans research their doctor’s recommendations after an appointment. A higher percentage of caregivers than noncaregiver peers do so (47% vs. 38%). Eighty percent of respondents say they are “likely” to research their doctor’s advice online after a visit.

When they have a medical problem or a question about their condition, just as many Americans (59%) turn to the internet for an answer as contact their doctor directly, the survey found. Twenty-nine percent of the respondents consult friends, family, or colleagues; 23% look up medical records if they’re easily accessible; 19% ask pharmacists for advice; and 6% call an unspecified 800 number.

Americans feel secure in the health information they find on the internet. Among those who go online to look up information, 86% are confident that it is credible. And 42% report feeling relieved that they can find a lot of information about their health concerns. Respondents also say that the information they gather allows them to feel more confident in their doctor’s recommendations (35%) and that they feel better after having learned more on the internet than their doctor had told them (39%). Men are more likely than women to say that their confidence in their doctor’s recommendations increased after doing online research (40% vs. 30%).
 

Access to health records

Access to medical records would help people better understand their condition or diagnosis. But nearly half of Americans (48%) admit they don’t usually review their medical records until long after an appointment, and 52% say they rarely access their records at all.

One in four Americans say that they don’t know where to go to access their health information or that they didn’t find the process easy. More than half of those who have never had to find their records think the process would be difficult if they had to try.

Eighty-one percent of Americans use an online platform or portal to access their medical records or health information. Two-thirds of Americans who use an online portal trust that their medical information is kept safe and not shared with other people or organizations.

Four in five respondents agree that if they had access to all of their health information, including medical records, recommendations, conditions, and test results, they’d see an improvement in their health management. Fifty-nine percent of them believe they’d also be more confident about understanding their health, and 47% say they’d have greater trust in their doctor’s recommendations. Higher percentages of caregivers than noncaregivers say the same.

Younger people, those with a high school degree or less, and those who earn less than $50,000 are less likely than older, better educated, and more affluent people to understand their doctor’s health information and to ask questions of their providers.

People of color struggle with their relationships with doctors, are less satisfied than white people with the information they receive during visits, and are more likely than white peers to feel that if they had access to all their health information, they’d manage their health better and be more confident in their doctors’ recommendations, the survey found.

A version of this article first appeared on WebMD.com.

Nearly two-thirds of Americans are not confident that they understood their doctor’s recommendations and the health information they discussed with their doctor after a visit, according to a new survey.

Confusion over health information and doctor advice is even higher among people who care for patients than among those who don’t provide care to their loved ones, the nationally representative survey from the AHIMA Foundation found.

The survey also shows that 80% of Americans – and an even higher portion of caregivers – are likely to research medical recommendations online after a doctor’s visit. But 1 in 4 people don’t know how to access their own medical records or find it difficult to do so.

The findings reflect the same low level of health literacy in the U.S. population that earlier surveys did. The results also indicate that little has changed since the Department of Health and Human Services released a National Action Plan to Improve Health Literacy in 2010.

That plan emphasized the need to develop and share accurate health information that helps people make decisions; to promote changes in the health care system that improve health information, communication, informed decision-making, and access to health services; and to increase the sharing and use of evidence-based health literacy practices.

According to the AHIMA Foundation report, 62% of Americans are not sure they understand their doctor’s advice and the health information discussed during a visit. Twenty-four percent say they don’t comprehend any of it, and 31% can’t remember what was said during the visit. Fifteen percent of those surveyed said they were more confused about their health than they were before the encounter with their doctor.
 

Caregivers have special issues

Forty-three percent of Americans are caregivers, the report notes, and 91% of those play an active role in managing someone else’s health. Millennials (65%) and Gen Xers (50%) are significantly more likely than Gen Zers (39%) and Boomers (20%) to be a caregiver.

Most caregivers have concerns about their loved ones’ ability to manage their own health. Most of them believe that doctors provide enough information, but 38% don’t believe a doctor can communicate effectively with the patient if the caregiver is not present.

Forty-three percent of caretakers don’t think their loved ones can understand medical information on their own. On the other hand, caregivers are more likely than people who don’t provide care to say the doctor confused them and to research the doctor’s advice after an appointment.

For many patients and caregivers, communications break down when they are with their health care provider. Twenty-two percent of Americans say they do not feel comfortable asking their doctor certain health questions. This inability to have a satisfactory dialogue with their doctor means that many patients leave their appointments without getting clear answers to their questions (24%) or without having an opportunity to ask any questions at all (17%).

This is not surprising, considering that a 2018 study found that doctors spend only 11 seconds, on average, listening to patients before interrupting them.
 

Depending on the internet

Overall, the AHIMA survey found, 42% of Americans research their doctor’s recommendations after an appointment. A higher percentage of caregivers than noncaregiver peers do so (47% vs. 38%). Eighty percent of respondents say they are “likely” to research their doctor’s advice online after a visit.

When they have a medical problem or a question about their condition, just as many Americans (59%) turn to the internet for an answer as contact their doctor directly, the survey found. Twenty-nine percent of the respondents consult friends, family, or colleagues; 23% look up medical records if they’re easily accessible; 19% ask pharmacists for advice; and 6% call an unspecified 800 number.

Americans feel secure in the health information they find on the internet. Among those who go online to look up information, 86% are confident that it is credible. And 42% report feeling relieved that they can find a lot of information about their health concerns. Respondents also say that the information they gather allows them to feel more confident in their doctor’s recommendations (35%) and that they feel better after having learned more on the internet than their doctor had told them (39%). Men are more likely than women to say that their confidence in their doctor’s recommendations increased after doing online research (40% vs. 30%).
 

Access to health records

Access to medical records would help people better understand their condition or diagnosis. But nearly half of Americans (48%) admit they don’t usually review their medical records until long after an appointment, and 52% say they rarely access their records at all.

One in four Americans say that they don’t know where to go to access their health information or that they didn’t find the process easy. More than half of those who have never had to find their records think the process would be difficult if they had to try.

Eighty-one percent of Americans use an online platform or portal to access their medical records or health information. Two-thirds of Americans who use an online portal trust that their medical information is kept safe and not shared with other people or organizations.

Four in five respondents agree that if they had access to all of their health information, including medical records, recommendations, conditions, and test results, they’d see an improvement in their health management. Fifty-nine percent of them believe they’d also be more confident about understanding their health, and 47% say they’d have greater trust in their doctor’s recommendations. Higher percentages of caregivers than noncaregivers say the same.

Younger people, those with a high school degree or less, and those who earn less than $50,000 are less likely than older, better educated, and more affluent people to understand their doctor’s health information and to ask questions of their providers.

People of color struggle with their relationships with doctors, are less satisfied than white people with the information they receive during visits, and are more likely than white peers to feel that if they had access to all their health information, they’d manage their health better and be more confident in their doctors’ recommendations, the survey found.

A version of this article first appeared on WebMD.com.

Nearly two-thirds of Americans are not confident that they understood their doctor’s recommendations and the health information they discussed with their doctor after a visit, according to a new survey.

Confusion over health information and doctor advice is even higher among people who care for patients than among those who don’t provide care to their loved ones, the nationally representative survey from the AHIMA Foundation found.

The survey also shows that 80% of Americans – and an even higher portion of caregivers – are likely to research medical recommendations online after a doctor’s visit. But 1 in 4 people don’t know how to access their own medical records or find it difficult to do so.

The findings reflect the same low level of health literacy in the U.S. population that earlier surveys did. The results also indicate that little has changed since the Department of Health and Human Services released a National Action Plan to Improve Health Literacy in 2010.

That plan emphasized the need to develop and share accurate health information that helps people make decisions; to promote changes in the health care system that improve health information, communication, informed decision-making, and access to health services; and to increase the sharing and use of evidence-based health literacy practices.

According to the AHIMA Foundation report, 62% of Americans are not sure they understand their doctor’s advice and the health information discussed during a visit. Twenty-four percent say they don’t comprehend any of it, and 31% can’t remember what was said during the visit. Fifteen percent of those surveyed said they were more confused about their health than they were before the encounter with their doctor.
 

Caregivers have special issues

Forty-three percent of Americans are caregivers, the report notes, and 91% of those play an active role in managing someone else’s health. Millennials (65%) and Gen Xers (50%) are significantly more likely than Gen Zers (39%) and Boomers (20%) to be a caregiver.

Most caregivers have concerns about their loved ones’ ability to manage their own health. Most of them believe that doctors provide enough information, but 38% don’t believe a doctor can communicate effectively with the patient if the caregiver is not present.

Forty-three percent of caretakers don’t think their loved ones can understand medical information on their own. On the other hand, caregivers are more likely than people who don’t provide care to say the doctor confused them and to research the doctor’s advice after an appointment.

For many patients and caregivers, communications break down when they are with their health care provider. Twenty-two percent of Americans say they do not feel comfortable asking their doctor certain health questions. This inability to have a satisfactory dialogue with their doctor means that many patients leave their appointments without getting clear answers to their questions (24%) or without having an opportunity to ask any questions at all (17%).

This is not surprising, considering that a 2018 study found that doctors spend only 11 seconds, on average, listening to patients before interrupting them.
 

Depending on the internet

Overall, the AHIMA survey found, 42% of Americans research their doctor’s recommendations after an appointment. A higher percentage of caregivers than noncaregiver peers do so (47% vs. 38%). Eighty percent of respondents say they are “likely” to research their doctor’s advice online after a visit.

When they have a medical problem or a question about their condition, just as many Americans (59%) turn to the internet for an answer as contact their doctor directly, the survey found. Twenty-nine percent of the respondents consult friends, family, or colleagues; 23% look up medical records if they’re easily accessible; 19% ask pharmacists for advice; and 6% call an unspecified 800 number.

Americans feel secure in the health information they find on the internet. Among those who go online to look up information, 86% are confident that it is credible. And 42% report feeling relieved that they can find a lot of information about their health concerns. Respondents also say that the information they gather allows them to feel more confident in their doctor’s recommendations (35%) and that they feel better after having learned more on the internet than their doctor had told them (39%). Men are more likely than women to say that their confidence in their doctor’s recommendations increased after doing online research (40% vs. 30%).
 

Access to health records

Access to medical records would help people better understand their condition or diagnosis. But nearly half of Americans (48%) admit they don’t usually review their medical records until long after an appointment, and 52% say they rarely access their records at all.

One in four Americans say that they don’t know where to go to access their health information or that they didn’t find the process easy. More than half of those who have never had to find their records think the process would be difficult if they had to try.

Eighty-one percent of Americans use an online platform or portal to access their medical records or health information. Two-thirds of Americans who use an online portal trust that their medical information is kept safe and not shared with other people or organizations.

Four in five respondents agree that if they had access to all of their health information, including medical records, recommendations, conditions, and test results, they’d see an improvement in their health management. Fifty-nine percent of them believe they’d also be more confident about understanding their health, and 47% say they’d have greater trust in their doctor’s recommendations. Higher percentages of caregivers than noncaregivers say the same.

Younger people, those with a high school degree or less, and those who earn less than $50,000 are less likely than older, better educated, and more affluent people to understand their doctor’s health information and to ask questions of their providers.

People of color struggle with their relationships with doctors, are less satisfied than white people with the information they receive during visits, and are more likely than white peers to feel that if they had access to all their health information, they’d manage their health better and be more confident in their doctors’ recommendations, the survey found.

A version of this article first appeared on WebMD.com.