Caroline Chen

Babies are dying of syphilis in the US — even though it’s 100% preventable

This story first appeared at ProPublica, a Pulitzer Prize-winning investigative newsroom. Sign up for The Big Story newsletter to receive stories like this one in your inbox.

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, California, an hour's drive southwest of her office at the Fresno County Department of Public Health. She was looking for a pregnant woman named Angelica, whose visit to a community clinic had triggered a report to the health department's sexually transmitted disease program. Angelica had tested positive for syphilis. If she was not treated, her baby could end up like the one in the picture or worse — there was a 40% chance the baby would die.

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

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

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

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

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

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

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

The nurse echoed her in Spanish.

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

Angelica had never heard of syphilis.

“Have you been to prenatal care?"

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

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

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

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

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

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

“Today, for sure."

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Do you remember me?" Yang asked.

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

“How are you doing? How's the baby?"

“Bien."

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

Angelica shook her head.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Success starts with filling gaps across the 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. Stafford, the maternal-fetal medicine specialist in Houston, says she's tired of hearing her own peers in medicine tell her, “Oh, syphilis is a problem?"

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

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

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

Gaining a patient's cooperation means seeing them as complex humans instead of just a case to solve. “There may be past traumas with the 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.'"

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

Fifteen minutes ticked by, then 20.

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

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

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

Finally, Yang thought. We got her here.

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

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

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

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

Angelica already had the door halfway open.

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

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

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

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

Here's how inequity gets built into America's vaccination system

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Series: Coronavirus

The U.S. Response to COVID-19

It's a fact that simply being eligible for a vaccine in America doesn't mean that you can instantly get one. Yet the ability to get to the front of the line isn't the same for everyone. ProPublica has found that, whether intentionally or not, some vaccine programs have been designed with inherent barriers that disadvantage many people who are most at risk of dying from the disease, exacerbating inequities in access to health care.

In many regions of the U.S., it's much more difficult to schedule a vaccine appointment if you do not have access to the internet. In some areas, drive-through vaccinations are the only option, excluding those who do not have cars or someone who can give them a ride. In other places, people who do not speak English are having trouble getting information from government hotlines and websites. One state is even flat-out refusing to allow undocumented workers with high-risk jobs to get prioritized for vaccination.

The vaccine supply is too low to inoculate everyone who is eligible, and competition for appointments is fierce.

“My nightmare scenario is that we have this two-tiered health system where there are people who are wealthy, privileged or connected, and then there's everybody else," Dr. Jonathan Jackson, director of the Community Access, Recruitment, and Engagement Research Center at Massachusetts General Hospital and Harvard Medical School, told ProPublica. “Once we hit that saturation point where the first tier has all gotten their vaccines, the narrative will shift to blame. It'll be 'Why haven't you taken care of this yet?'"

If you or your family members are experiencing difficulty getting a COVID-19 vaccine because of economic barriers or other inequities, or if you design vaccination plans and can share solutions or challenges related to fair distribution, please fill out our questionnaire below. If you prefer to call or text, you can get in touch at 202-681-0779 in English or Spanish.

For People With Disabilities, It Can Be a Struggle Just to Access Their Appointments

From the moment her 69-year-old father, Jose Balboa, became eligible for the vaccine in January, Kristine Mathason spent part of each day on the phone and online trying to get him a shot. She found available appointments a few times, but couldn't find a way to actually take her father to the vaccination sites. Balboa is paralyzed on his left side after a stroke and needs a wheelchair to get around. In Miami, where he lives, most vaccine sites are drive-up only.

Mathason doesn't have a van that can accommodate Balboa's wheelchair, and she isn't able to lift her father out of it. To move him between his bed and the chair, his home health aides use a patient lift. This isn't possible when trying to get him into a car, Mathason said, as the door gets in the way of either a lifting device or two people trying to support him at once. In the past when family members tried to move him, Balboa fell.

Mathason said she was “willing to jump through all the hoops" to get Balboa the vaccine. “He's super high-risk: He's diabetic, he had a stroke 17 years ago," she said. “He has high blood pressure. My half brother who lives with him works at a restaurant, so that's like a high-risk job. We do our best."

Mathason checked out every other avenue she can think of, but each was a dead end. She looked into renting a van, but she's been out of work because of the pandemic and couldn't afford it. She thought about Uber, but wheelchair access and the cost of waiting in a drive-through were prohibitive. “He's just one of those people who unfortunately is falling through the cracks," she said.

A county service offers scheduled rides for seniors, but it only provides drop-off services and wouldn't take Balboa through a drive-through. There was an additional Catch-22: The scheduled rides require 24 hours' notice for pickup, but the local hospital that offers walk-up appointments schedules them less than 24 hours in advance. The health department in Miami-Dade County directed questions to the Florida state health department, which did not respond to requests for comment.

According to data from the Centers for Disease Control and Prevention, about 14% of adults in Florida have disabilities that affect mobility, which the CDC defines as serious difficulty walking or climbing stairs. While some people with mobility limitations may be able to access a car more easily than Balboa, he and his family were left with very few options.

“I just wish they had thought about people like my dad," Mathason said. “What about the people who don't have a me who's trying to move heaven and earth to get him an appointment? What about the people who just don't have a car and can't get anywhere?"

After more than a month of searching, Balboa got a call from the medical center he goes to for doctor visits. The center had gotten a supply of doses, and they picked him up and took him to the site in one of their wheelchair-accessible vans. On February 24th, he got his first shot.

If You Can't Access or Navigate the Internet, You Might Have Fewer Options

Eneyda Morales, a 40-year-old mother of three in East Hampton, New York, was diagnosed with breast cancer two years ago and is still undergoing treatment. Four days a week, she works at a bagel shop near her home. “I'd like to get a vaccine because of the health issues I have and because I work in a place where I have to serve people," Morales said in Spanish. But she's not sure how she's actually going to get a vaccine; while many Americans are hunting for information online, Morales doesn't own a computer, nor does she know how to use one. She has a smartphone, but she primarily uses it for simple searches like looking up addresses. The only computer at her home is the one her 8-year-old daughter's school provided for classwork.

New York state has a vaccination hotline for scheduling appointments by phone, but only for vaccines administered at state-run sites. The state site closest to Morales is about 60 miles away, an hour and a half by car. If Morales wants to get an appointment closer to home, she'll need to contact local hospitals and pharmacies directly. The state hotline's automated message tells callers that the quickest way to get information about eligibility and appointment scheduling is online.

Morales plans to seek help from OLA of Eastern Long Island, a local nonprofit, to schedule an appointment closer to home on one of her days off. Without their help, she said, she wouldn't know where to begin searching.

Some states that have tried to provide offline options for booking vaccine appointments have stumbled. A phone line set up in Maryland was inundated with callers, who complained of being put on hold and then hung up on. In Tennessee, Shelby County's decision to allow internet users to sign up first meant all the slots were snapped up by those with web access before phone appointments even opened.

About 10% of U.S. adults don't use the internet, according to the Pew Research Center. Americans who are older, have less income, have less education or are nonwhite are less likely to go online, researchers found.

People Who Don't Speak English May Have Trouble Getting Information

Gladys Godinez, the daughter of retired meatpacking workers, is an organizer for Solidarity with Packing Plant Workers who lives in Lexington, Nebraska. Her parents, like many of the immigrant workers she represents, are not fluent in English. Nebraska's Spanish-language vaccine website offers a hotline to schedule appointments by phone. Godinez wanted to see what people in her parents' situation were up against if they didn't have a tech-savvy English speaker to help, so she called the number on Feb. 2. She said it took 15 minutes for someone to pick up the phone; that person answered in English.

Godinez said she was told that no one who could speak Spanish was available. She tried to insist: “I said, 'Please, I would really like to be able to register for the vaccine.' I said it in Spanish. She said, 'We don't have anybody that can talk to you in Spanish.' So I just said 'gracias' and hung up."

Nebraska's Department of Health and Human Services said that since Feb. 13, 25% of each hotline shift is staffed by fluent Spanish speakers, but each call center agent can connect with interpretation services as needed. A spokesperson for the department did not comment on Godinez's experience.

Language isn't the only potential barrier facing immigrant workers in Nebraska. In January, Gov. Pete Ricketts was asked if undocumented immigrants in meatpacking facilities would be included in the state's upcoming vaccination push. His response was discouraging: “You're supposed to be a legal resident of the country to be able to be working in those plants. So I do not expect that illegal immigrants will be part of the vaccine with that program."

Godinez said the governor's words did a lot of damage even for people who are legal residents. “That scared a lot of individuals," she said. “Just Spanish-speaking individuals living their life, they have legal status, they're already scared of being profiled. Now here is your governor saying, 'Sorry, not sorry, undocumented workers are not going to get the vaccine.'"

Later that day, the governor's communications director tweeted that “while the federal government is expected to eventually make the vaccine available for everyone in the country, Nebraska is going to prioritize citizens and legal residents ahead of illegal immigrants." Nebraska's Department of Health and Human Services told ProPublica that proof of citizenship is not a requirement to receive the vaccine.

The federal government, even under the Trump administration, has encouraged undocumented immigrants to get vaccinated. According to a report by the Kaiser Family Foundation about immigrant vaccine access, Arizona has specifically prioritized undocumented immigrants, while Virginia and New Jersey have prioritized migrant workers. Several states, including Utah, have emphasized that undocumented immigrants are eligible for the vaccine and their personal information will not be shared with authorities. Oregon and Washington have discussed doing outreach to immigrant communities to make sure they have the right information.

Health care workers and advocates are also trying to make access to COVID-19 vaccines more realistic for undocumented residents. In Baltimore, local nonprofit CASA de Maryland is hiring people to knock on doors to share vaccine information and pushing for its Baltimore office, located in a COVID-19 hot spot, to become a vaccination site.

Vaccine Sites That Are Drive-Through Exclude People Without Cars

Los Angeles's Chinatown is about a mile from Dodger Stadium, one of the largest vaccination sites in the country. Despite the short distance, many of the neighborhood's seniors have no way to get vaccinated at the stadium; the site is drive-up only, and many of them have no cars. Sissy Trinh, executive director of the Southeast Asian Community Alliance, which has been providing aid to families in Chinatown and nearby Lincoln Heights during the pandemic, said community members face various hurdles that local government and testing sites haven't accounted for.

Along with lacking access to cars, many of the seniors served by SEACA primarily speak Chinese dialects, Vietnamese, Khmer or Spanish and aren't internet users. Trinh and her colleagues have been scrambling to figure out how to get these seniors vaccinated. They considered hiring Ubers or Lyfts, but the cost of paying drivers to wait in line would be too high for the small nonprofit. SEACA also can't bus the seniors together to a vaccination site for fear of exposing them to potential infection.

In late February, Los Angeles Mayor Eric Garcetti announced that the city would send a mobile vaccination clinic to Chinatown and a few other neighborhoods prioritized for their medically vulnerable residents. The city reserved 800 doses for Chinatown. SEACA helped get them to residents, scheduling appointments from its waiting list of 2,500 people, translating documents for them and recruiting volunteers who are fluent in Cantonese, Taishanese, Teochew or Vietnamese.

Trinh said she's excited that some doses are finally reaching seniors in the neighborhood, but she wishes officials had started planning for this when the pandemic started. “I know a lot of people were rushing to figure out how to get PPE to people and updating stay-at-home orders," she said. “But there should have been a dedicated team to figure out the vaccine rollout." Los Angeles officials said they hope to open additional mobile clinic sites by the end of March.

In Pima County, Arizona, health officials are also using mobile clinics to bring vaccines to high-risk residents. Baltimore and Fort Worth, Texas, are among other places attempting to overcome transportation barriers by using mobile sites.

Unclear Communication Leaves People Anxious and Unable to Plan

James, 82, lives in Chesterfield County, Virginia, outside of Richmond. (He asked to be identified only by his first name for privacy reasons.) Like many Americans, he turned first to his primary care physician for information about the vaccine. “I contacted my physician's office to find out if they'd let me, as a patient, know when I'd get the vaccine, and they said, 'Oh, no, no, we're not going to do that.'" They instead directed him to the Virginia Department of Health. So James went on the state health department's website. “I filled in all their little boxes, and that was it — I never heard a word," he said. “I had no idea whether I'm registered or not." He also tried registering on his county health department's website, and had the same experience. “You don't know whether you're talking to a computer or to a garbage can," he said. “When you're filling it in, where does the form go? I'm concerned that when I finally get to go to the vaccine site, someone's going to say I'm not registered."

James contrasted the experience to online shopping: “When you go buy something off the web, you get an immediate response from the vendor saying, 'Thank you for your purchase.' Why can't they do that? Say thank you for your registration?"

Virginia's initial vaccine registration system indeed provided no email confirmation, but the new system, implemented on Feb. 16, now provides “an immediate acknowledgement on the screen" as well as an email or text message, according to health department spokesperson Melissa Gordon. She added that “it is not practical to give an exact place 'in line' or estimated appointment time frame, because clinics are put together based on capacity, eligibility and equity drivers that change over time." The only thing the email confirmation can do, she said, is to “notify the recipient that their information had been transferred to the new statewide system and no other action was needed." Residents who signed up under the old system, including James, eventually got an email to acknowledge their registration, albeit weeks after they filled in the form. Gordon added, “Unfortunately, it may be several weeks or months before everyone can get an appointment."

Confusion over “When's it going to be my turn?" has only increased as states start to expand access to people with underlying health conditions, with criteria that can be hard to interpret. Some Massachusetts residents with asthma, for example, are at a loss as to whether they qualify, WBUR recently reported. Massachusetts has “moderate to severe" asthma on its list of eligible medical conditions, but what counts as “moderate" asthma is ambiguous.

James has been waiting for the vaccine so he can safely visit his children and four grandchildren, who range in age from 11 to 28. In the absence of information from his local health department, he's been relying on the news to glean details about the rollout. He said he read about one couple who drove nearly five hours each way from the Richmond area to Abingdon to get a vaccine. James thinks it's not worth going that far, especially since that could involve an overnight stay somewhere. “I'll just sit around and wait and mind my p's and q's," he said.

The experience so far has made him “lose faith in the whole process," he said. “The president can get on TV and say he's purchased 600 million, 600 billion of these things, and I say, 'Fine, but where is this stuff? Tell me, when is it going to be on my street?'"

How many vaccine shots go to waste? Several states aren't even counting

ProPublica is a Pulitzer Prize-winning investigative newsroom. Sign up for The Big Story newsletter to receive stories like this one in your inbox.

As reports emerge across the country of health facilities throwing out unused and spoiled COVID-19 vaccines, some state governments are failing to track the wastage as required by the Centers for Disease Control and Prevention, leaving officials coordinating immunization efforts blind to exactly how many of the precious, limited doses are going into the trash and why.

In Washington, a health facility allegedly threw out some COVID-19 vaccine doses at the end of workers' shifts because staff believed state guidelines blocked them from giving unused shots to people below the top priority tier. In Maryland, workers appear to have tossed thawed doses when they ran out of time to administer them safely. How many doses, exactly, have been wasted in those states is unknown because neither state is tracking unused or wasted vaccines.

In Indiana, where hospitals have told the media about discarding some shots, the state Health Department said it requires wastage to be reported but wasn't able to tell ProPublica how many doses have been tossed statewide. Nonetheless, it asserted that “wastage has been minimal."

Experts say that waste reporting is essential during a vaccination campaign to encourage careful handling and the use of every viable dose and, more importantly, to identify potential problems in the shipping and cold storage operations. With inconsistent reporting requirements and no enforcement of a federal mandate to report wastage, vaccine providers have little incentive to acknowledge wasting vaccines, said Dr. Ashish Jha, dean of the School of Public Health at Brown University.

Jha said he thinks that the true number of wasted doses across the country is far higher than a handful. After he detailed one anecdote he heard about an ER physician forced to waste vaccine doses in a thread on Twitter, his phone quickly filled with more than a dozen messages from other medical workers, confirming what he suspected: At a time when the U.S. is desperately short on vaccines, a significant number of doses are ending up in the trash.

Clinics and hospitals have “gotten slammed" when the media has learned of them wasting even a few doses, he said. “And the signal to everybody else is, if you have waste, don't report it. Because if you do, you're gonna get into a lot of trouble. That combination means, at least in my assessment, there's a lot of waste and a lot of underreporting of that waste."

The CDC requires all organizations that administer the vaccine to report the number of vaccine doses “that were unused, spoiled, expired, or wasted as required by the relevant jurisdiction." The CDC also asked states to describe their wastage monitoring method during the distribution planning process.

Vaccine providers, such as pharmacies and hospitals, are supposed to provide data on wasted doses to their state health agencies, which then send the information to the CDC. Like many parts of the vaccine rollout, that has not gone according to plan. State by state, ProPublica found, reporting requirements vary and are not reliably communicated to vaccine providers. Even when the rules are clear, they are not regularly enforced, nor are numbers reported to the public.

Maryland's Hospital Association said wastage data “is not systematically collected," while the state's Health Department said that “unless they are reported to us, MDH does not track specific instances of accidental vaccine wastage at the local level."A Washington State Health Department spokesperson said that the state “does not systematically capture wasted dose information." The spokesperson added that providers are encouraged to use up all of the shots they receive and that “if a provider doesn't have enough qualifying employees under" the top priority group, “they can help vaccinate workers

who aren't receiving vaccine directly from their employers."

Michigan's Department of Health and Human Services said, “We have not asked that vaccine providers report this data," though it said that 10 wasted doses had been reported to it as of Jan. 13.In some cases, states said they were aware of specific instances of wastage. New Jersey said that it was “aware of 16 vials that had to be discarded because they arrived broken when the boxes were open."

While a spokesperson noted that providers are instructed to give vaccines to people on waitlists to minimize the chances of vaccine being discarded, the spokesperson didn't respond to questions about whether providers were mandated to report wasted doses.

Other states do have wastage reporting mandates. Pennsylvania, for example, said it requires providers to report any doses that are received and are not able to be used and was able to give a percentage — 0.1% of doses received for injections as of Jan. 11 — that had to be disposed of. “The majority of discarded vaccine is related to vials broken in handling and syringe issues, such as bent or broken needles or clients refusing after the vaccine dose was drawn," said Department of Health spokesman Barry Ciccocioppo.

Colorado also said that waste is being tracked. “The state is aware that Pueblo Local Public Health rendered 300 doses of the Pfizer vaccine unusable after a portable vaccine storage unit malfunction," a spokesperson from the state's Joint Information Center said. “The state's goal is to use every single available vaccine, acknowledging that emergencies may occur infrequently in the distribution process."

In every mass vaccination effort, some share of doses unavoidably goes into the trash rather than arms. However, data on wasted shots — especially in large quantities — is an essential tool for federal and state health agencies trying to spot problems in how the vaccine is being shipped, stored and given to the public.

State vaccine officials monitor wastage numbers to determine if providers are mishandling shipments or improperly maintaining the temperature of their vials, said Dr. Kelly Moore, deputy director of the Immunization Action Coalition and former head of Tennessee's immunization program. "Are they tracking things and responding appropriately, if you're seeing extremely low wastage rates and everything is always perfect?" Moore said. "When things look too good to be true, they usually are."

The two vaccines currently authorized, made by Moderna and Pfizer-BioNTech, both must be used within six hours of leaving cold storage, reaching room temperature and being opened. If there are no-shows for vaccination appointments, pharmacists have to quickly find replacements before the thawed vaccines expire.

Complicating the count is the fact that the number of doses available in a vial sometimes exceeds the amount prescribed on the label — pharmacists have commonly found that they can squeeze a sixth dose out of Pfizer's vials, even though they are labeled as containing five. That means that a vaccine site could be allocated a certain number of doses on paper, have a few extra ones left that need to be tossed and still come out net positive. In that situation, it is unclear if the discarded doses should count as waste.

Data on wasted doses is routinely monitored in childhood immunizations in large part because it is required by the federal Vaccines For Children program, which provides innoculations to millions of children not covered by private health insurance, said Dr. Sean O'Leary, a professor of pediatric infectious diseases at University of Colorado Medicine. “Practices that are participating in that program, which are the vast majority of pediatric practices and a lot of family medicine practices, are used to keeping track very carefully of their vaccine inventory."

There isn't a federal program overseeing most adult vaccinations, so any wastage reporting for adult shots, like the flu shot, would be managed state by state.

While collecting wastage data is a good business practice, O'Leary said it is most useful as a deterrent against vaccine providers mishandling or discarding doses irresponsibly.

"It's being tracked as a disincentive to letting [wastage] happen," he said, “for accountability for people who are delivering the vaccines that they are doing their best to give the vaccines and store them properly."

However, there is also a danger in stigmatizing the waste of vaccine doses, said Moore, the immunization coalition deputy director. Accidents and normal human error are going to make some vials unfit to use on patients. Doses compromised by unsafe temperatures or contamination need to be thrown out, not injected into people. “You never, ever want to have clinics feel pressured not to waste vaccine that needs to be wasted," Moore said. “If you say, 'No one should ever damage vaccine,' you're really going to be in trouble."

The CDC says vaccine providers should avoid wastage and disclose when it happens.

“If there is excess vaccine, clinic staff should do everything possible to avoid wasting the dose. If vaccine wastage occurs, it should be reported into CDC's Vaccine Tracking System (VTrckS)," said CDC spokeswoman Kristen Nordlund. “We are working to figure out how to provide this data online in the future when the data is more complete."

In the meantime, federal officials have begun to urge that priority guidelines not get in the way of using vaccines. “It's more important to get people vaccinated than to perfectly march through each prioritized group," Alex Azar, secretary of health and human services under President Donald Trump, said at a briefing on Jan. 6.

This means that a pharmacist should use a dose that's about to expire on any available person — even someone who isn't in a priority group — rather than letting it go in the trash. “There's always someone in line. The whole nation is in line," said Lori Freeman, chief executive officer of the National Association of County and City Health Officials. “There's no reason for any vaccine to go to waste."

Dr. Mysheika Roberts, health commissioner of Columbus, Ohio, said in an interview last week that her local vaccination site hasn't had to waste a single dose of vaccine so far. Initially, if there were extra doses at the end of the day, they used them on their own staff, she said. After that, the mayor allowed them to put police officers on the waitlist — even though only health care providers were technically eligible at the time — so the vaccinators could call the station if they had extra doses. Managing a waitlist is complicated, Roberts said, because you need to have people who want the vaccine and have both the transportation and flexibility to get to the vaccine clinic within about 30 minutes, but so far it has worked out. The vaccine clinic has also managed to further reduce potential waste by getting appointment confirmations and defrosting vaccine vials close to appointment times, she said.

An Ohio Department of Health spokesperson said the state requires providers to report waste, and that 165 doses of the vaccine had been recorded as wastage as of Jan. 15.

“I hope to never be in a position where I have to waste a dose," Roberts added. “I'd go on a street corner and find someone to give the vaccine to before I have to throw it away."

Stanford front-line residents excluded from COVID vaccine after 'algorithm' prioritizes leadership, high-ranking doctors

ProPublica is a Pulitzer Prize-winning investigative newsroom. Sign up for The Big Story newsletter to receive stories like this one in your inbox.

Stanford Medicine residents who work in close contact with COVID-19 patients were left out of the first wave of staff members for the new Pfizer vaccine. In their place were higher-ranking doctors who carry a lower risk of patient transmission, according to interviews with six residents and two other staff members and e-mail communications obtained by ProPublica.

“Residents are patient-facing, we're the ones who have been asked to intubate, yet some attendings who have been face-timing us from home are being vaccinated before us," said Dr. Sarah Johnson, a third-year OB-GYN resident who has delivered babies from COVID-positive patients during the pandemic. “This is the final straw to say, 'We don't actually care about you.'"

Another resident, who asked not to be named, said a nurse who works in an operating room for elective surgeries has been notified she'll get the vaccine in the first wave. “We test people for COVID before elective surgeries, so by definition, we will know if those patients have COVID," he said, so to him, it didn't make sense that that nurse would be prioritized.

“We take complete responsibility for the errors in the execution of our vaccine distribution plan," said Lisa Kim, a Stanford Medicine spokesperson. “Our intent was to develop an ethical and equitable process for distribution of the vaccine. We apologize to our entire community, including our residents, fellows and other frontline care providers, who have performed heroically during our pandemic response. We are immediately revising our plan to better sequence the distribution of the vaccine."

An algorithm chose who would be the first 5,000 in line. The residents said they were told they were at a disadvantage because they did not have an assigned “location" to plug into the calculation and because they are young, according to an email sent by a chief resident to his peers. Residents are the lowest-ranking doctors in a hospital. Stanford Medicine has about 1,300 across all disciplines.

Only seven made the priority vaccination list, despite the fact that this week, residents were asked to volunteer for ICU coverage in anticipation of a surge in COVID-19 cases.

Stanford Medicine didn't respond to a request for comment on how the vaccines were allocated and whether there was a flaw in the algorithm. The tumult reflects the difficulties of ethically parceling out a limited supply of vaccine and weighing competing factors, such as age, risk of contracting the disease and comorbidities. Adding to the challenge is the angst that comes when such decisions are made without all stakeholders involved.

In a letter to Stanford leadership sent on Thursday, the chief resident council wrote, “While leadership is pointing to an error in an algorithm meant to ensure equity and justice, our understanding is this error was identified on Tuesday and a decision was made not to revise the vaccine allocation scheme before its release today." The council asked for a timeline for vaccination of the residents and transparency regarding the algorithm.

In response to the residents' protests, Dr. Niraj Sehgal, chief medical officer, sent an email saying, “Please know that the perceived lack of priority for residents and fellows was not the intent at all." He added that with the anticipated authorization of Moderna's vaccine, “we're increasingly confident in getting everyone vaccinated, including all of you." He signed off with “heartfelt apologies."

Some departments appear to be trying to fix the problem on their own. Dr. Mary Hawn, chair of the department of surgery, confessed to being “disturbed and puzzled" by the vaccination roster that “included many of the medical staff list that aren't our physicians on the front line." She emailed her department asking people slotted for the first wave to “bring a resident that is patient facing to get the vaccine in your place" and to ask the program director for their “buddy" assignment.

She added: “Let's get this right."

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The enraging deja vu of the third coronavirus wave

ProPublica is a Pulitzer Prize-winning investigative newsroom. Sign up for The Big Story newsletter to receive stories like this one in your inbox.

There's a joke I've seen circulating online, over and over during this pandemic, that goes along the lines of, “Months this year: January, February, March, March, March, March, March…"

My lips pull into a smile, but my heart's not in it.

I was on the phone two weeks ago with a nurse who lives in Missouri, where cases have risen from 1,100 per day in August to about 3,400 daily in November. Her husband works in the ER of a rural hospital. Every time a patient suspected of having COVID-19 walks in, the sample is sent to be tested in St. Louis, an hour and a half away. Results take eight hours or more to process.

Medical workers don't get enough protective equipment. “They're given one N95 mask and have to keep it in a bag to reuse for days," the nurse said, fretting about her husband's safety. “He should at least get a new mask for every shift, right?"

I looked at the calendar: It was Oct. 30, but it might as well have been March.

I could still hear the voice of another nurse, Sarah, in Illinois, who poured out her fears to me on March 2, when the coronavirus was just starting to make its presence known in her city.

Sarah told me she had been instructed to write her name on a brown paper bag and put her mask in it to reuse for the week. “There's this feeling like, we're just going to get it," she told me, sounding more resigned than scared.

As a health reporter covering the pandemic, I've experienced too many moments of deja vu. This summer, as the virus swept through the South, news footage of overwhelmed hospitals in Houston turning away ambulances recalled similar scenes from March and April in New York City. Now, we're in the so-called third wave of the pandemic, with the virus slamming into Midwestern states, and this week, Dr. Gregory Schmidt, associate chief medical officer at the University of Iowa Hospitals and Clinics, said his colleagues are converting 16 hospital beds into new ICU beds in anticipation of an influx of COVID-19 patients. “People in leadership are starting to say things in meetings like, 'I have a sense of impending doom.'"

I'm exhausted and infuriated to be doing the same interviews and hearing the same stories for a third time. Why haven't we learned? What have we been doing between March and November?

Why is Dr. Peter Wentzel, in Grafton, West Virginia, only now able to order a point-of-care test system for his community clinic, just to be told that the cartridges for it will arrive in December at the earliest? Why are clinicians at Mountain Family Health Centers in Glenwood Springs, Colorado, once again facing seven- to 10-day wait times for their patients' test results?

I remind myself that many things have improved since March. An incredible amount of scientific knowledge has been amassed about the virus itself. Thanks to detailed contact tracingstudies around the world, we've learned that the virus can be spread beyond 6 feet via small particles suspended in the air, teaching us the importance of good ventilation to decrease transmission risk. Thanks to antibody studies, we're learning that reinfection, while possible, is likely rare.

We now use ventilators less aggressively and know the benefits of steroids like dexamethasone, while other treatments like hydroxychloroquine have lost favor thanks to rigorous studies that have debunked anecdotal hype. This week, an antibody therapy developed by Eli Lilly was granted emergency use authorization by the Food and Drug Administration. Trials have shown that it can help mild to moderate COVID-19 patients reduce hospitalizations. And Pfizer shared encouraging, early news from its ongoing trial, saying its vaccine was more than 90% effective in preventing people from getting sick. It is thanks to the work of so many career scientists and medical personnel that if one gets infected with the coronavirus today, the chance of survival is higher than in March.

Yet while some material supplies have increased since March (we thankfully have more COVID-19 tests, though still not enough), humans are a fixed resource, and the skilled labor of a veteran respiratory therapist or an ICU nurse is hard to come by. Before the pandemic, America already had a nursing shortage. Now, this dearth is becoming acutely felt.

A ER nurse who lives in Wisconsin told me that her hospital is starting to run out of beds, but more urgently, it is running out of staff, in part because some workers have gotten sick and others are in quarantine. “The state keeps talking about how many beds there are, but that doesn't mean there's staff for them," she said.

When no hospital beds are available, the emergency department gets full, she explained to me; she's had to board patients there for 20 hours. Meanwhile, she wields a faulty forehead thermometer at the door. Her own temperature recently read 84.9 F — hypothermic, if true. Staff members were given plastic water bottles emblazoned with the hospital's logo as a thank you.

“It's so demoralizing," she told me. “I would take getting punched on a daily basis rather than what we're going through now."

Tim Size, executive director of the Rural Wisconsin Health Cooperative, said some of his 43 member hospitals are seeing “significant staff shortages." Initially, he said, they were able to hire from staffing agencies, which recruit traveling nurses to work short-term contracts, but now that the virus is surging in multiple states, hospitals all over are competing for the same personnel. “So people are working more overtime, which is causing more fatigue, which will lead to more burnout," Size said. “If we don't stop the growth…" He shook his head.

Schmidt, at the University of Iowa, tells me he's concerned not just about overwork, but also about the psychological toll on medical staff. “You watch patients who are young and who should have had good lives die without their families by them, and their families being distraught, and then you go out through your community and you see people partying and going to bars."

He paused, then added. “We can do anything for two months," he said. “But surge after surge, it's hard for everybody."

One thing that's burned into my head is what Chrissie Juliano, executive director of the Big Cities Health Coalition, told me when I asked her whether the constant struggles to get on top of the coronavirus have simply been because this pandemic is so unprecedented that nobody could have prepared for it.

“We would be overwhelmed to some extent," she told me. “But it didn't have to be this bad."

So much has fed into our quagmire: a lack of national leadership, the perpetuation of misinformation. The nurse in Missouri told me about a man with preexisting conditions who ended up in the ICU because he believed that the virus would go away by Nov. 4 and went out to eat at restaurants. Of course, it didn't go away that day. Instead, we hit a record high of 103,067 cases, the first time we broke six digits; 1,116 people died. It didn't have to be this bad.

I don't want to hear the same stories in a fourth wave, a fifth wave, to feel like we are trapped in an endless spiral, unnecessarily repeating our own mistakes. New leadership is coming to the White House; Joe Biden's first move as president-elect was to announce a COVID-19 advisory board. I hope it will amplify the voices of our public health leaders, depoliticize the pandemic and deliver for all of the weary front-line workers.

But we don't have to wait until then. The best way to help our medical workers isn't to stand at our windows at 7 p.m. cheering or to give them thank-you water bottles. It's to stay out of their ERs and ICUs by keeping ourselves and our neighbors safe.

Who decides when vaccine studies are done? These internal documents show Fauci plays a key role

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Dr. Anthony Fauci, the nation's top infectious disease official, will oversee most of the ongoing COVID-19 vaccine trials in the U.S., but not that of the current front-runner made by Pfizer, documents obtained by ProPublica show.

According to a draft charter spelling out how most of the advanced COVID-19 vaccine trials will be monitored, Fauci is the “designated senior representative" of the U.S. government who will be part of the first look at the results. That puts Fauci in the room with the companies — including Moderna, Johnson & Johnson and AstraZeneca — in deciding whether the vaccines are ready to seek approval from the Food and Drug Administration.

Fauci's role, which has not been previously reported and was confirmed for ProPublica by the National Institutes of Health, could offer some reassurance in the face of widespread concerns that President Donald Trump wants to rush through an unproven vaccine. As Sen. Kamala Harris, the Democratic nominee for vice president, put it at last week's debate, “If the public health professionals, if Dr. Fauci, if the doctors tell us that we should take it, I'll be the first in line to take it."

But there's a big caveat. Fauci doesn't have the same hands-on role for the vaccine that seems poised to show results soonest: Pfizer's. That's because Pfizer opted not to accept government funding and participate in the federal program to develop a coronavirus vaccine, known as Operation Warp Speed. (The government did make an almost $2 billion deal with Pfizer to preorder up to 600 million doses of the company's vaccine, but it isn't contributing money to the vaccine's development like it is for other companies.)

“(We) offered opportunities for collaboration with Pfizer," said a spokesperson for the National Institutes of Allergy and Infectious Diseases, a branch of the NIH. “Pfizer chose to conduct their Phase 3 study without Operation Warp Speed or NIH support."

Pfizer's CEO, Albert Bourla, said Friday that the earliest his company would be ready to apply for authorization would be the third week of November. While Pfizer might know by the end of October if its vaccine is effective, it would need additional time to gather sufficient safety data to present to the FDA, Bourla said in an open letter on the company's website.

Fauci's role in overseeing the companies that are participating in Operation Warp Speed arises from a unique arrangement that the government set up to monitor the trials. Typically, clinical trials set up their own independent panels of scientists, known as a data safety monitoring board or DSMB, to watch out for safety concerns or early signs of success. But all of the vaccine trials in Operation Warp Speed are sharing a common DSMB whose members were selected by Fauci's agency, the NIAID. They're also sharing a network of clinical trial sites where some volunteers are recruited for the studies.

A DSMB is responsible for making recommendations such as halting the trial if there is a safety concern or letting the manufacturer know that there's enough evidence to submit an application to the FDA. Ordinarily, a DSMB's recommendation goes to the company running the trial. In this case, the U.S. government — which gets two representatives, one from the NIAID and one from the Biomedical Advanced Research and Development Authority — will also have a seat at the table in deciding what to do next.

“Once the DSMB makes a decision, the DSMB provides the recommendation to not only the study sponsor but also to the" U.S. government, whose “designated senior representative" is Fauci, the NIAID confirmed in an email. Fauci declined to be interviewed.

That's not the same as saying Fauci has the last word. The company and the government are supposed to reach a consensus, the agency said. But if they can't all agree, the ultimate decision belongs with the company.

Still, it would be an improbably brazen move for a company to move ahead over Fauci's objection, given his public stature, experts said. “These are the most important trials in medical history, this is the ultimate fishbowl," said Dr. Eric Topol, director of the Scripps Research Translational Institute. “I don't think any sponsor would dare defy the DSMB's recommendation."

While the mechanics of a DSMB may be unfamiliar to most members of the public, people probably know and trust Fauci, according to Amy Pisani, executive director of the national nonprofit organization Vaccinate Your Family. “(He's) the sweetheart of the nation right now," Pisani said. “I do think people have faith in Anthony Fauci."

“Having Fauci with oversight is terrific," Topol added. “The more people who are experts looking at it, the better. You can't be careful enough."

Other members of the DSMB for the COVID-19 vaccines, though not as well known as Fauci, are also widely respected in their fields. DSMB members are typically kept confidential to shield them from outside influence, but ProPublica has been able to identify a few members. The charter obtained by ProPublica described the group, which has about a dozen members, as having expertise in “biostatistics, clinical trials, infectious diseases, vaccine development and ethics."

The panel's chair is Dr. Richard Whitley, a professor of pediatrics, microbiology, medicine and neurosurgery at the University of Alabama at Birmingham. His role became public when the university announced it, though the webpage was later taken down.

His leadership provides another level of comfort in the trustworthiness of the trials to those who know him. “He is not only famously bright but he is famously independent and outspoken," said Dr. William Schaffner, professor of preventive medicine and infectious diseases at Vanderbilt Medicine. “He'll look at the data and tell you exactly what he thinks."

Whitley declined to comment.

Susan Ellenberg, professor of biostatistics at the University of Pennsylvania and a former director at the FDA, told ProPublica in an interview that many people, including herself, were worried the NIH might be “pushed by the political leadership at HHS to release data" from trials prematurely, which could undermine the integrity of a trial. HHS, the U.S. Department of Health and Human Services, is the NIH's parent agency. Her concern was that political leaders might not understand scientific arguments to not disrupt the trials when wanting to have data “to be able to move quickly in an urgent situation," she said.

At the time of the interview, Ellenberg had not identified herself as a member of the NIH's DSMB, but later acknowledged that she was a member.

Dr. Malegapuru William Makgoba, an immunologist based in South Africa, is one of a few international members of the DSMB. Makgoba is well known for his work on public health initiatives around HIV/AIDS, including the South African AIDS Vaccine Initiative. Makgoba confirmed his role on the DSMB but declined to comment further.

The common DSMB appears to be unprecedented, if only because there have not previously been multiple vaccines in development for the same disease at the same time. Experts said the arrangement offers benefits such as bolstering the evidence available to show that any one shot is safe and effective.

Standardizing trial measurements should make the vaccines easier to compare head to head, which may be useful for knowing whether one is better or worse than another in certain subgroups, such as the elderly or people with compromised immune systems, according to Vanderbilt's Schaffner.

“To me, it's better for public health to have a fairly common assessment," said Dr. Gregory Glenn, president of research and development at Novavax, which has received $1.6 billion from Operation Warp Speed and hopes to begin its Phase 3 trial in the U.S. this month as part of the NIH's clinical trial network.

There may also be some benefits from a safety perspective.

If a potential safety issue appears in one trial, having a common data safety monitoring board for multiple trials means that the board knows to look out for that same issue across all the trials, said Dr. Tal Zaks, chief medical officer of Moderna. “When AstraZeneca had an adverse side effect, we have a DSMB looking at our trial — the fact that it's the same DSMB means that there's not one DSMB that has to go educate another DSMB," Zaks said. (ProPublica's board chairman, Paul Sagan, is a member of Moderna's board and a company stockholder.)

AstraZeneca's trial has been put on hold in the U.S. while the company and the FDA investigates what happened with a participant who had a bad reaction. It's not yet clear whether the reaction was due to the vaccine or unrelated.

“AstraZeneca is committed to working with governments and key partners to ensure we develop and gain regulatory approval for an effective vaccine as quickly as possible," the company said in a statement.

AstraZeneca added that another benefit of joining the government's consortium was that its large network of trial sites can help reach minority communities that are historically less represented in clinical trials and also more vulnerable to COVID-19.

Pfizer's decision not to participate means that it and the other companies may miss out on some of these benefits of pooling resources. “It's at least unfortunate, and not very sporting, as the British would say," Schaffner said.

At the same time, there could be advantages to Pfizer's going solo. “One of the greatest risks to this process is the perception of political influence, and in that regard, having parallel efforts, especially efforts seen as independent of one another and/or independent of perceived sources of political influence, is a good thing," said Mani Foroohar, an analyst at the investment bank SVB Leerink.

Pfizer declined to comment on its decision not to join the government's shared DSMB and trial network.

Whether it's Pfizer or one of the companies participating in Operation Warp Speed, the final say on whether a vaccine is ready for public use belongs to the FDA.

The FDA has promised to present the data to an advisory committee of external experts in a public meeting. A preliminary meeting will be held on Oct. 22 to discuss, generally, the standards the FDA will seek to see before authorizing any vaccine. The agency has also committed to holding advisory committee meetings to review data from individual vaccine candidates.

Between the independent trial safety monitoring boards and the public advisory committee meetings, “any kind of hanky-panky there that people are worried about is going to (go through) multiple checkpoints," Fauci said in an interview with Dr. Howard Bachner on the JAMA Network podcast on Sept. 25. “The big elephant in the room is, is somebody going to try to make a political end run to interfere with the process? … If you look at the standard process of how these things work, I think you can feel comfortable that it is really unlikely that that is going to happen."

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