Federal data shows a nationwide surge of kids in mental health crisis during the pandemic — a surge that's further taxing an already overstretched safety net.

This article was published on Friday, January 29, 2021 in Kaiser Health News.

By Christine Herman, Side Effects Public Media and Cory Turner, NPR and Rhitu Chatterjee, NPR

A bag of Doritos, that's all Princess wanted.

Her mom calls her Princess, but her real name is Lindsey. She's 17 and lives with her mom, Sandra, a nurse, outside Atlanta. On May 17, 2020, a Sunday, Lindsey decided she didn't want breakfast; she wanted Doritos. So she left home and walked to Family Dollar, taking her pants off on the way, while her mom followed on foot, talking to the police on her phone as they went.

Lindsey has autism. It can be hard for her to communicate and navigate social situations. She thrives on routine and gets special help at school. Or got help, before the coronavirus pandemic closed schools and forced tens of millions of children to stay home. Sandra said that's when their living hell started.

"It's like her brain was wired," she said. "She'd just put on her jacket, and she's out the door. And I'm chasing her."

On May 17, Sandra chased her all the way to Family Dollar. Hours later, Lindsey was in jail, charged with assaulting her mom. (KHN and NPR are not using the family's last name.)

Lindsey is one of almost 3 million children in the U.S. who have a serious emotional or behavioral health condition. When the pandemic forced schools and doctors' offices to close last spring, it also cut children off from the trained teachers and therapists who understand their needs.

As a result, many, like Lindsey, spiraled into emergency rooms and even police custody. Federal data shows a nationwide surge of kids in mental health crisis during the pandemic — a surge that's further taxing an already overstretched safety net.

'Take Her'

Even after schools closed, Lindsey continued to wake up early, get dressed and wait for the bus. When she realized it had stopped coming, Sandra said, her daughter just started walking out of the house, wandering, a few times a week.

In those situations, Sandra did what many families in crisis report they've had to do since the pandemic began: race through the short list of places she could call for help.

First, her state's mental health crisis hotline. But they often put Sandra on hold.

"This is ridiculous," she said of the wait. "It's supposed to be a crisis team. But I'm on hold for 40, 50 minutes. And by the time you get on the phone, [the crisis] is done!"

Then there's the local hospital's emergency room, but Sandra said she had taken Lindsey there for previous crises and been told there isn't much they can do.

That's why, on May 17, when Lindsey walked to Family Dollar in just a red T-shirt and underwear to get that bag of Doritos, Sandra called the last option on her list: the police.

Sandra arrived at the store before the police and paid for the chips. According to Sandra and police records, when an officer approached, Lindsey grew agitated and hit her mom on the back, hard.

Sandra said she explained to the officer: "'She's autistic. You know, I'm OK. I'm a nurse. I just need to take her home and give her her medication.'"

Lindsey takes a mood stabilizer, but because she left home before breakfast, she hadn't taken it that morning. The officer asked if Sandra wanted to take her to the nearest hospital.

The hospital wouldn't be able to help Lindsey, Sandra said. It hadn't before. "They already told me, 'Ma'am, there's nothing we can do.' They just check her labs, it's fine, and they ship her back home. There's nothing [the hospital] can do," she recalled telling the officer.

Sandra asked if the police could drive her daughter home so the teen could take her medication, but the officer said no, they couldn't. The only other thing they could do, the officer said, was take Lindsey to jail for hitting her mom.

"I've tried everything," Sandra said, exasperated. She paced the parking lot, feeling hopeless, sad and out of options. Finally, in tears, she told the officers, "Take her."

Lindsey does not like to be touched and fought back when authorities tried to handcuff her. Several officers wrestled her to the ground. At that point, Sandra protested and said an officer threatened to arrest her, too, if she didn't back away. Lindsey was taken to jail, where she spent much of the night until Sandra was able to post bail.

Clayton County Solicitor-General Charles Brooks denied that Sandra was threatened with arrest and said that while Lindsey's case is still pending, his office "is working to ensure that the resolution in this matter involves a plan for medication compliance and not punitive action."

Sandra isn't alone in her experience. Multiple families interviewed for this story reported similar experiences of calling in the police when a child was in crisis because caretakers didn't feel they had any other option.

'The Whole System Is Really Grinding to a Halt'

Roughly 6% of U.S. children ages 6 through 17 are living with serious emotional or behavioral difficulties, including children with autism, severe anxiety, depression and trauma-related mental health conditions.

Many of these children depend on schools for access to vital therapies. When schools and doctors' offices stopped providing in-person services last spring, kids were untethered from the people and supports they rely on.

"The lack of in-person services is really detrimental," said Dr. Susan Duffy, a pediatrician and professor of emergency medicine at Brown University.

Marjorie, a mother in Florida, said her 15-year-old son has suffered during these disruptions. He has attention deficit hyperactivity disorder and oppositional defiant disorder, a condition marked by frequent and persistent hostility. Little things — like being asked to do schoolwork — can send him into a rage, leading to holes punched in walls, broken doors and violent threats. (Marjorie asked that we not use the family's last name or her son's first name to protect her son's privacy and future prospects.)

The pandemic has shifted both school and her son's therapy sessions online. But Marjorie said virtual therapy isn't working because her son doesn't focus well during sessions and tries to watch TV instead. Lately, she has simply been canceling them.

"I was paying for appointments and there was no therapeutic value," Marjorie said.

The issues cut across socioeconomic lines — affecting families with private insurance, like Marjorie, as well as those who receive coverage through Medicaid, a federal-state program that provides health insurance to low-income people and those with disabilities.

In the first few months of the pandemic, between March and May, children on Medicaid received 44% fewer outpatient mental health services — including therapy and in-home support — compared to the same time period in 2019, according to the Centers for Medicare & Medicaid Services. That's even after accounting for increased telehealth appointments.

And while the nation's ERs have seen a decline in overall visits, there was a relative increase in mental health visits for kids in 2020 compared with 2019.

The Centers for Disease Control and Prevention found that, from April to October last year, hospitals across the U.S. saw a 24% increase in the proportion of mental health emergency visits for children ages 5 to 11, and a 31% increase for children ages 12 to 17.

"Proportionally, the number of mental health visits is far more significant than it has been in the past," said Duffy. "Not only are we seeing more children, more children are being admitted" to inpatient care.

That's because there are fewer outpatient services now available to children, she said, and because the conditions of the children showing up at ERs "are more serious."

This crisis is not only making life harder for these kids and their families, but it's also stressing the entire healthcare system.

Child and adolescent psychiatrists working in hospitals around the country said children are increasingly "boarding" in emergency departments for days, waiting for inpatient admission to a regular hospital or psychiatric hospital.

Before the pandemic, there was already a shortage of inpatient psychiatric beds for children, said Dr. Christopher Bellonci, a child psychiatrist at Judge Baker Children's Center in Boston. That shortage has only gotten worse as hospitals cut capacity to allow for more physical distancing within psychiatric units.

"The whole system is really grinding to a halt at a time when we have unprecedented need," Bellonci said.

'A Signal That the Rest of Your System Doesn't Work'

Psychiatrists on the front lines share the frustrations of parents struggling to find help for their children.

Part of the problem is there have never been enough psychiatrists and therapists trained to work with children, intervening in the early stages of their illness, said Dr. Jennifer Havens, a child psychiatrist at New York University.

"Tons of people showing up in emergency rooms in bad shape is a signal that the rest of your system doesn't work," she said.

Too often, Havens said, services aren't available until children are older — and in crisis. "Often for people who don't have access to services, we wait until they're too big to be managed."

While the pandemic has made life harder for Marjorie and her son in Florida, she said it has always been difficult to find the support and care he needs. Last fall, he needed a psychiatric evaluation, but the nearest specialist who would accept her commercial insurance was 100 miles away, in Alabama.

"Even when you have the money or you have the insurance, it is still a travesty," Marjorie said. "You cannot get help for these kids."

Parents are frustrated, and so are psychiatrists on the front lines. Dr. C.J. Glawe, who leads the psychiatric crisis department at Nationwide Children's Hospital in Columbus, Ohio, said that once a child is stabilized after a crisis it can be hard to explain to parents that they may not be able to find follow-up care anywhere near their home.

"Especially when I can clearly tell you I know exactly what you need, I just can't give it to you," Glawe said. "It's demoralizing."

When states and communities fail to provide children the services they need to live at home, kids can deteriorate and even wind up in jail, like Lindsey. At that point, Glawe said, the cost and level of care required will be even higher, whether that's hospitalization or long stays in residential treatment facilities.

That's exactly the scenario Sandra, Lindsey's mom, is hoping to avoid for her Princess.

"For me, as a nurse and as a provider, that will be the last thing for my daughter," she said. "It's like [state and local leaders] leave it to the school and the parent to deal with, and they don't care. And that's the problem. It's sad because, if I'm not here …"

Her voice trailed off as tears welled.

"She didn't ask to have autism."

To help families like Sandra's and Marjorie's, advocates said, all levels of government need to invest in creating a mental health system that's accessible to anyone who needs it.

But given that many states have seen their revenues drop due to the pandemic, there's a concern services will instead be cut — at a time when the need has never been greater.

This story is part of a reporting partnership that includes NPR, Illinois Public Media and Kaiser Health News.

The vaccine rollout in the Golden State has devolved into chaos and confusion.

This article was published on Friday, January 29, 2021 in Kaiser Health News.

By Angela Hart

Joyce Hanson was thrilled when she heard Gov. Gavin Newsom announce Jan. 13 that Californians age 65 and older would be eligible to get vaccinated against covid-19.

Infections and hospitalizations had been surging in California, and Hanson knew a simple trip to the grocery store put her at greater risk of getting sick and dying. Plus, she hadn't seen her daughter in more than a year, so she immediately began making plans to visit her in the San Francisco Bay Area.

"I felt this huge weight lifted off my heart when the governor said me and my husband could get vaccinated," said Hanson, 69, a San Bernardino resident and registered Democrat who voted for Newsom in 2018.

She jumped online to book an appointment, frantically searching San Bernardino city and county websites for openings. Next she called pharmacies all over Southern California, then hospitals and her local health department. No luck.

"It's very frustrating," said Hanson, who is among a growing number of Californians becoming disillusioned with Newsom — including some of his fellow Democrats — over California's erratic vaccination rollout, which has been riddled with mixed messages, shifting priorities and poor communication.

"The messaging hasn't been very clear," she said. "If we're not going to actually be able to get the vaccine until March or April, I can deal with that, but just be honest and tell us that it's not realistic yet."

Since October, Newsom has touted his administration's readiness to vaccinate the state's 40 million residents, while repeatedly assuring them that "hope is on the horizon." He has vowed that California would lead the nation with a fair and efficient system of delivering vaccines.

Instead, the situation has devolved into chaos and confusion, as vulnerable older people, teachers and others in essential industries scramble to find a vaccine appointment — often without help or direction from state or local officials.

Newsom, who emerged as an early leader in the pandemic when he issued the nation's first statewide stay-at-home order, is desperately trying to turn the situation around — and political strategists say he must do so quickly because his political future depends on it. He is facing a Republican-driven effort to recall him from office, with supporters gaining momentum from the vaccine problems. Even some in his Democratic base are beginning to question his leadership.

"This is not going well. You just cannot have these kinds of disparities we're seeing all over California. The governor has got to get control of this vaccination effort," said Los Angeles-based Democratic strategist Garry South, who ran the gubernatorial campaigns of former Democratic Gov. Gray Davis, recalled by voters in 2003 and replaced by Republican Gov. Arnold Schwarzenegger.

"If the vaccination process is not carried out smoothly and efficiently, a lot of voters will blame him, regardless of whether it's actually his fault or not," South said. "People did not blame Gray Davis for starting the electricity crisis, but they did blame him for failing to solve the problem."

Recall organizers have until March 17 to gather the roughly 1.5 million valid signatures needed to put the question before voters. As of Jan. 6, the California secretary of state's office had received nearly 724,000 signatures.

"We're in a mad dash to get enough," said Orrin Heatlie, a retired Yolo County Sheriff's Department sergeant, who is leading the recall campaign. "The dark path to getting vaccinated is not why we started this, but the governor's mishandling of it is causing real harm and has only furthered our momentum."

Newsom campaign spokesperson Dan Newman dismissed the recall effort as "expected background noise" and argued that Newsom is focused on ending the pandemic. "His obsessive and relentless focus is on vaccinations, and economic relief and recovery."

Newsom has enjoyed relatively high ratings, with 58% of Californians approving of his job performance, according to the latest job approval poll by the Public Policy Institute of California. That poll was conducted in October, before any covid vaccines had been cleared for use.

While the governor cannot control the supply of vaccine flowing to California — a major limiting factor in the state's ability to distribute doses — he is leading the statewide vaccination strategy that was submitted to the Centers for Disease Control and Prevention in October.

"We have long been in the vaccination business," Newsom boasted in a news conference on Oct. 19, saying California's experience with mass vaccination campaigns has prepared it to undertake one now, complete with public service announcements, cutting-edge technology and state support for local efforts. "Just consider — 19 million annual flu shots typically distributed here in the state of California."

Newsom's vaccine strategy mirrors his approach to the pandemic so far: It hands primary responsibility for administering the vaccine to the state's 58 counties, which have different plans for who gets the shot first, how they will be notified when it's their turn and where they will be vaccinated.

Chronically underfunded county health departments — which are drowning under other pandemic-related duties, such as covid testing, contact tracing and enforcing local restrictions on businesses — have struggled to keep up with the additional responsibilities. In many cases, they have failed to communicate effectively with the public or provide vaccines quickly and efficiently.

Dr. Phuong Luu, the health officer for Yuba and Sutter counties in rural Northern California, said overworked public health workers are spending an immense amount of time fielding phone calls from people demanding shots. "It's an extreme amount of pressure," she said. "People are angry and they're calling saying, 'No, the governor said that I'm eligible. Why aren't you accommodating me?'"

In the Bay Area's suburban Contra Costa County, health officer Dr. Chris Farnitano said the county cannot accommodate everyone 65 and older. It is focusing on people 75 and up, and supplies are dwindling so quickly that officials can't promise a timely second dose.

California is consistently at the bottom nationally in percentage of shots administered, with about half of doses used as of Thursday, compared with 81.6% in West Virginia and 80.8% in North Dakota, according to an analysis of state and federal vaccine data. Texas, the state closest to California in population, has administered 60% of its shots.

Overall, 5.8% of Californians have received their first dose, compared with 6.8% of people nationally.

"States that rely heavily on counties have faced bigger challenges," said Larry Levitt, executive vice president for health policy at KFF. "The more layers that this implementation has to pass through, the more challenging it seems to get." (KHN, which produces California Healthline, is an editorially independent program of KFF.)

A bipartisan group of 47 state legislators sent Newsom a letter this month blasting the vaccination chaos. "We are all aware of the limited number of vaccines that have been made available to the states, but we believe that we need to plan for a more effective and efficient rollout," they wrote.

Newsom has acknowledged that he must remedy the situation, pledging on Jan. 6 to administer 1 million additional vaccines in 10 days. He fell short on that promise but characterized the effort as a success, with 900,000 additional vaccinations administered by Jan. 15. This week, he released a plan to speed and centralize the vaccination distribution process by mid-February, and he unveiled a website called My Turn, which eventually will inform Californians when they are eligible and allow them to make appointments.

Widespread frustration is not unique to California. Nearly 60% of adults 65 and older in the U.S. say they don't know when or where they will get vaccinated, and nearly three-quarters of Americans say they're either frustrated with the status of vaccinations or flat-out angry, according to a new KFF poll.

But in California, that anger presents political difficulty for Newsom.

"He's got more crises on his plate than any previous governor," former governor Davis told California Healthline. "At the moment, people in California are upset, so accelerating the administration of those vaccines should be the first, and most important, thing that every public elected official does every day."

Newsom may appear safe from a Republican-led effort in a state that votes overwhelmingly Democratic, but unlike aspects of the pandemic that have disproportionately hurt small-business owners or Black and Latino communities, the vaccination issue touches nearly all Californians.

"Newsom's handling of the crisis may not be what qualifies it for the ballot," said Dan Schnur, who teaches political communication at the University of Southern California and the University of California-Berkeley. "But if the recall does qualify, how the vaccination process was handled is going to be the primary basis on which voters make their decision on whether to keep him in office or not."

Some voters say Newsom's vaccination rollout shows it's time for new political blood.

"You hear him on the news saying we're doing better and we see light at the end of the tunnel, but this isn't going well," said Scott Hunyadi, 31, of San Dimas, who voted for Newsom in 2018. "I'd never vote for a Republican, but given the opportunity, I'd certainly vote to recall Newsom and install a better Democratic candidate if one was on the ballot."

Hanson, who still hasn't found an appointment, places most of the blame on former President Donald Trump. But she said Newsom has acted as a "cheerleader" for his administration rather than being honest about his missteps.

"I know he's trying, but honestly, at this point, I'm so soured," she said. "There's no guarantee that anyone could do a better job, but I'd certainly look at a Democratic challenger if there was one."

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Healthcare Foundation.

Angela Hart: ahart@kff.org, @ahartreports

While the vaccine rollout has hit snags across the U.S., including in many large urban areas, some rural counties have gotten creative about getting the doses out quickly to long-term care facilities.

This article was published on Wednesday, January 28, 2021 in Kaiser Health News. This story also ran on The Denver Post.

By Rae Ellen Bichell

Bingo is back in the dining room. In-person visits have returned, too, though with masks and plexiglass. The Haven Assisted Living Facility’s residents are even planning a field trip for a private movie screening once they’ve all gotten their second round of covid-19 vaccines.

Such changes are small but meaningful to residents in the Hayden, Colorado, long-term care home, and they’re due mostly to the arrival of the vaccine.

While the vaccine rollout has hit snags across the U.S., including in many large urban areas, some rural counties — with their smaller populations and well-connected communities — have gotten creative about getting the doses out quickly to long-term care facilities. They are circumventing bogged-down Walgreens and CVS, the pharmacy chains contracted for the campaign, and instead are inoculating their older residents with the counties’ shares of doses.

It’s clear why the counties are trying their own path. Federal data provided by the state of Colorado shows that, as of Jan. 21, dozens of long-term care facilities in Colorado were enrolled to receive vaccines from Walgreens or CVS but still did not have any vaccination dates scheduled. Among assisted living facilities in particular, rural locations tended to have later start dates than non-rural ones. By mid-January, over 90 facilities had opted out of the program that has been beset by cumbersome paperwork and corporate policies.

When Roberta Smith, who directs the Routt County Public Health Department, learned in December that The Haven and another facility in the county hadn’t gotten any dates from Walgreens for their shots, she diverted about 100 doses from the county’s allotment. The vaccines would likely have gone to health care workers, she said, but she couldn’t let the most vulnerable in the county wait.

Fourteen of the 19 people who died of covid in the county, after all, had been residents of those two long-term care facilities.

The county received a shipment of Moderna vaccines the following week to continue with its health care workers, Smith said.

The health department ensured that all able and willing residents of the county’s two long-term care facilities received their first doses before 2021 began. Smith suspects such reprioritization and fast deployment — despite the department’s reliance on spreadsheets and sticky notes to schedule visits — is easier in small communities.

“There is a sense of community in our smaller, rural counties that we’re all kind of looking out for each other. And when you tell someone, ‘Hey, we need to vaccinate these folks first,’ they’re quick to say, ‘Oh, yeah,’” Smith said.

Hayden, a town of about 2,000 in northwestern Colorado, is the kind of place where, within hours of Haven staffers posting online that they were looking for a grill, workers from the hardware store delivered one at no charge. It’s the kind of town where locals have come throughout the pandemic to serenade Haven residents with guitar, flute and violin performances outside the windows. When the virus hit The Haven, eventually killing two of its 15 residents, locals paraded past the facility in their cars, taped with balloons and signs that said “We love you” and “Get well soon.”

After all the heartache, isolation and waiting, newly vaccinated resident Rosa Lawton, 70, is ready to bust out of The Haven. She said she expected to get her second vaccine dose Jan. 28.

“I hope to be able to go shopping at Walmart and City Market and go to the bank, the library, the senior center. … I won’t stop,” she said, laughing. “Right now, we’re restricted to the building.”

Even after getting everyone vaccinated, though, assisted living locations won’t be able to fling open the doors quite yet. State and federal officials need to give the OK, said Doug Farmer, president and CEO of the Colorado Health Care Association, which represents long-term care facilities in the state. Still, the combination of vaccines, repeated negative covid tests and a lower level of virus spread in the community is allowing some facilities the peace of mind to crack the doors open just a bit in the meantime.

Until recently, Lawton and others at The Haven were playing bingo perched in their doorways, with a staff member moving down the hallway calling out numbers. Lawton said she could see about four others from her door, but not her friends Sally, Ruth or Louise. Now, they’re back in the dining room, with one person to a table and playing with sanitized chips.

“We can see each other and we’re closer together and we can hear the caller better,” said Lawton. “It’s just more of a group experience.”

Residents can now gather in the common areas, wearing masks, to play the piano and do target practice with foam dart guns. And the excursion to a movie theater next month will be the first field trip in nearly a year. (Lawton is rooting for watching “The Sound of Music.”)

“It just feels overall lighter,” said Adrienne Idsal, director of The Haven, hours before receiving her second vaccine dose.

Fraser Engerman, a spokesperson with Walgreens, confirmed that some counties moved ahead with vaccinations before the company received its allocation, and said the company is on track to complete vaccinations at all Colorado long-term care facilities that they were responsible for by the end of January. Monica Prinzing, a CVS Health spokesperson, said that her company has completed first doses for all 119 skilled-nursing facilities in Colorado and more than half the assisted living sites it partnered with, adding that their team is working closely with facilities to “remain on track to meet our program commitments.”

Along the state’s eastern edge, where Colorado meets Kansas, a pair of counties is already done vaccinating long-term care residents, according to Meagan Hillman, the public health director for Prowers and Kiowa counties.

In December, Hillman and her colleagues started to wonder just how Walgreens was going to get the shots to their four local long-term care facilities.

“Out here, I’m two-plus hours from the closest Walgreens, and I don’t even know where a CVS is,” she said. “It’s such a huge operation and we just were worried, you know. Oftentimes the little guy gets left out or left for last.”

Hillman said she and her colleagues managed to secure Pfizer vaccines from a local hospital.

“We have been so beat down in public health that I actually went and did the vaccination clinic,” said Hillman, who is also a physician assistant. “We just needed that — a good, heart-swelling thing to do.”

She said it indeed helped boost her spirits to give the shots herself. “Finally, I feel like the light at the end of the tunnel is not a train,” she said.

The ongoing struggle for complete data shows how little has changed for the CDC since the virus appeared in the U.S. one year ago.

This article was published on Thursday, January 28, 2021 in Kaiser Health News.

By Rachana Pradhan and Fred Schulte

As they rush to vaccinate millions of Americans, health officials are struggling to collect critically important information — such as race, ethnicity and occupation — of every person they jab.

The data being collected is so scattered that there's little insight into which healthcare workers, or first responders, have been among the people getting the initial vaccines, as intended — or how many doses instead have gone to people who should be much further down the list.

The gaps — which experts say reflect decades of underfunding of public health programs — could mean that well-connected people and health personnel who have no contact with patients are getting vaccines before front-line workers, who are at much higher risk for illness. Federal and state officials prioritized health workers plus residents and staffs of nursing homes for the first wave of shots.

Although officials leading President Joe Biden's covid response have pledged to tackle racial inequities as they seek to control the pandemic, lapses in reporting race or ethnicity could hinder efforts to identify and track whether minorities hit especially hard by the pandemic are getting shots at a high-enough rate to achieve hoped-for levels of herd immunity. So far, limited data in multiple states shows Black residents are getting vaccinated at lower rates than whites.

"Every state knows where they've sent vaccine, and every provider has to report inventory. But as far as who is being vaccinated, that one is a little more tricky," said Claire Hannan, executive director of the Association of Immunization Managers.

Data that eventually makes its way to the Centers for Disease Control and Prevention and other federal systems is "only going to be as good as whatever you can get out of the vaccine registries" that vary by state, said Dr. Marcus Plescia, chief medical officer for the Association of State and Territorial Health Officials. "They're all different and, going into this, they were all at different stages of how robust they were."

There are 64 immunization registries in the United States that gather information for states, territories and a handful of large cities — and they aren't connected. Meanwhile, real-time data in the U.S. public health system is virtually nonexistent, Plescia said.

Reporters at KHN examined the data being gathered versus what the CDC says is supposed to be collected for every person vaccinated, which includes: name, address, sex, date of birth, race and ethnicity, the date and location where they were vaccinated, and the shot they received (currently only two products are available, from Pfizer-BioNTech and Moderna). Not on its list: occupation, even though initial vaccine distribution largely hinges on place of work, prioritizing healthcare personnel, long-term care facilities and then other essential workers such as teachers, grocery store workers and firefighters.

Dr. Katherine Poehling, a pediatrician at the Wake Forest School of Medicine who's on the CDC advisory committee that issued vaccine priority recommendations, declined to comment on whether occupation should have been a required element for reporting to the CDC.

"I think you can always wish for more data, but really what we're going for is vaccinating everybody that wants to be vaccinated," she said. "The fact that there was something available on day one was really remarkable," she said, referring to a database that could track vaccine shipments and allocations by state.

Still, gaps are evident, including holes in CDC rules for reporting race and ethnicity. Race and ethnicity information are missing from at least hundreds of thousands of vaccine doses that have already been administered and reported to state public health authorities.

Texas' vaccine data on Wednesday showed that race or ethnicity was unknown for more than 700,000 people. Virginia's dashboard shows that data was missing for nearly 300,000 vaccinations, or 52% of vaccine doses, as of Tuesday. The same was true for tens of thousands of vaccinations in Colorado and Maryland.

In Minnesota, state law prohibits the sharing of data on race and ethnicity.

"It is important how many shots are administered, but it is critical that we get good race and ethnicity information about who is receiving it so we can identify disparities and other problems," said Janet Hamilton, executive director of the Council of State and Territorial Epidemiologists.

The CDC declined to say how many of the vaccine records it had received were missing the information. In response to questions, CDC spokesperson Kristen Nordlund said the agency plans to publish race, ethnicity and other demographic data next week.

The Department of Health and Human Services did not respond to multiple requests for comment.

Dr. Marcella Nunez-Smith, chair of the Biden administration's covid-19 health equity task force, on Wednesday conceded that the racial and ethnicity data is "incomplete" but said it wasn't the only way to gauge progress of the vaccine rollout on the ground.

"We can think about things like neighborhoods and communities as metrics and ways to track as well," she said. "We're building our equity dashboard right now, and we'll rely on government sources as well as sources of data external to government."

The ongoing struggle for complete data shows how little has changed for the CDC since the virus appeared in the U.S. one year ago and its early efforts to collect data identifying covid-infected people were widely panned.

So far, the CDC has publicly stated how many vaccines have been distributed nationwide and how many doses administered. Its dashboard includes a breakdown of how many shots have been given by state and in long-term care facilities. Walgreens and CVS together have given more than 2.5 million doses in nursing homes and other long-term care facilities, though neither company has released data on race or whether the shots were given to patients or staffers.

State and federal health officials know where vaccines go as officials must track inventory by facility. Several states have released breakdowns of doses administered by the type of institution, providing a window into how many shots are being used in hospitals, nursing homes, pharmacies, primary care practices, public health departments and tribal health sites. And when signing up for an appointment, individuals may be asked to provide their occupation to attest they qualify for a shot under a state's rules at a given time.

Maryland and Ohio require providers to submit data on the occupations of vaccine recipients, in a break with CDC practice. But several states contacted by KHN said they do not collect that information, such as Idaho, Michigan, Minnesota, Texas and Virginia.

Electronic health records manufacturers that provide software to hospitals and other facilities said they are scrambling to modify the software to accommodate data reporting requirements that vary by state.

Occupation is one example. Another: Texas law requires the state to collect information on all medications given "in response to a declared disaster or public health emergency," said State Health Services spokesperson Chris Van Deusen.

Leigh Burchell, vice president of policy and government affairs at the EHR firm Allscripts, said these variations are "obstacles none of us has tackled before," though she thinks that, overall, "successes outweigh failures" as companies have had to adjust quickly during the pandemic.

EHR systems can connect to state registries, which ultimately send vaccine tracking data to the CDC. A lack of "a coordinated, national public health infrastructure" continues to be a problem that "forces everyone to work less efficiently than would be optimal," Burchell said.

Health IT consultant Reed Gelzer said the situation reflects the 30-year-plus failure of the public health system to modernize data collection. He said officials need look no further than chronic problems tracking childhood immunizations, handled in some states at the county level, and in others at the state level, often poorly. A national system to track immunizations has never existed, which he argues should have been discussed before the vaccine rollout.

"As far as I know, even in the earliest days of the pandemic, nobody did stress-testing of the information system," Gelzer said.

Cerner, a major electronic health records company, says that some hospitals are using an existing workplace health system to track employees who have been vaccinated while others create a patient record for vaccinated employees as well as for patients. The systems can capture demographic details, but the data fields to do that have to be turned on and it's unclear whether its client hospitals have done so.

The CDC and other federal agencies rely on a complicated web of systems to get data about who's been vaccinated. State and local vaccine registries, known as immunization information systems, are the most comprehensive source of records and the "source of truth," Hannan said.

Those registries have long-standing connections to providers' electronic health records, said Rebecca Coyle, executive director of the American Immunization Registry Association. But they aren't meant to capture certain information, such as a patient's medical history and occupation.

Those state and local registries transmit data to an HHS-owned clearinghouse, where personal details are redacted.

The clearinghouse gets data from other sources, too. These include a new CDC vaccination clinic mobile app called VAMS, as well as pharmacies, prisons and federal agencies like the Department of Veterans Affairs and the Indian Health Service.

A limited slice of the data then moves to another CDC repository known as the "Data Lake," where it can be analyzed and reported to the CDC and Tiberius, a separate software platform developed by federal contractor Palantir for former President Donald Trump's Operation Warp Speed effort. The Data Lake also receives information on shipment and vaccine orders from the CDC's VTrckS system.

On top of that dizzying array of tools, many states use another, third-party software system, PrepMod, to manage vaccine inventory, appointments and reporting.

When asked whether not having data on occupations could hinder tracking whether priority groups have received their shots, Nordlund of the CDC said it's unnecessary to vaccinate all individuals in one phase before initiating the next.

"This means ideally hitting a sweet spot that maximizes getting vaccine into arms while also being mindful of the priority groups," Nordlund said, "especially because these are people who are higher risk for complications from covid-19 or are more likely to be exposed to the virus because of their jobs."

Lawmakers recently attempted to address the nation's antiquated public health data infrastructure, partly by appropriating $500 million under the CARES Act to the CDC. In an August letter to Rep. Lucy McBath (D-Ga.), former CDC director Dr. Robert Redfield said the agency would use the funds to update how state and health departments report data to federal officials, improve the CDC's own data infrastructure, and develop new standards for public health reporting.

Additionally, tucked into the massive year-end spending bill Congress passed in late December was a requirement that HHS expand and improve public health data systems used by the CDC and award grants to state and local health departments to upgrade their infrastructure.

The Biden administration has made promises to strengthen the federal government's approach to data collection on vaccination efforts.

KHN data reporter Hannah Recht and KHN correspondent Lauren Weber contributed to this report.