The richest man in South Dakota, T. Denny Sanford, was investigated for possible possession of child pornography. Sanford is a major donor to children's charities and Republican politicians.

This article was published on Friday, August 31, 2020 in ProPublica.

By Robert Faturechi and Isaac Arnsdorf

T. Denny Sanford, the richest man in South Dakota and a major donor to children's charities, was being investigated for possible possession of child pornography, according to four people familiar with the probe.

Investigators with the South Dakota attorney general's Division of Criminal Investigation obtained a search warrant as part of the probe, according to two of the people, who spoke on the condition of anonymity. They said the case was referred to the U.S. Department of Justice for further investigation.

Sanford has not been charged with any crime. It's not clear what evidence, if any, investigators used to obtain the search warrant or what they collected from the search. It's also not clear how the investigation may have progressed since federal authorities received the referral or if it is still ongoing.

Sanford's lawyer did not respond to requests for comment, but on Friday night he told the Argus Leader, a South Dakota newspaper, "Although we know very little about any state or federal inquiry relating to Mr. Sanford, we do know those authorities responsible for investigating allegations obviously did not find information or evidence that supported or resulted in any criminal charges."

Sanford controls First Premier Bank, a major issuer of high-interest credit cards for people who have poor credit. Worth an estimated $1.6 billion, he is a major donor to the state's political figures, including its U.S. senators and state-level officials, and a prolific supporter of children's organizations and other charitable causes, including a major hospital system based in South Dakota that bears his name.

Sanford has close ties to top state and federal political figures, including Sen. John Thune, whose wife has worked for a Sanford-affiliated organization, and the state's former attorney general and senate majority leader, both of whom now work for Sanford.

He was recently named one of the country's top 10 philanthropists in 2019, clocking in just behind Bill and Melinda Gates. He also donates the Children's Home Society of South Dakota, which serves young victims of violence and abuse, and children's hospitals. Academic and research institutions across the country are named after him.

The South Dakota attorney general's chief of staff, Timothy Bormann, said the office's policy is to neither confirm nor deny the existence or details of any criminal investigation.

A Justice Department spokesman did not immediately respond to questions from ProPublica.

Sanford is being represented by Marty Jackley, a former attorney general and U.S. attorney in South Dakota. As part of an unsuccessful primary campaign for governor, Jackley highlighted his role as U.S. attorney in creating a stand-alone Internet Crimes Against Children Task Force in the state. As attorney general, he co-chaired a national campaign to rescue children from sexual exploitation.

Sanford is a towering presence in South Dakota's largest city, Sioux Falls, sometimes jokingly called Sanford Falls. The 12,000-seat indoors sports and events arena bears his name, as do several of the largest buildings in town. Outside the castle-like Sanford Children's Hospital, a statue named "For the Love of Children" depicts Sanford kneeling beside two small boys and a girl. Another statue, "Chasing Dreams," at the Sanford Sports Complex portrays children running toward him with basketballs.

"My primary bent, in terms of philanthropy, is directed at small children, to give them the opportunity to realize a full life," he told the Argus Leader in 2004.

Websites for Sanford organizations show the billionaire frequently interacting with kids involved in his charitable programs, visiting a small girl in a hospital bed, smiling at drawings with a schoolchild sitting in his lap and passing out candy canes to a group of kids. A newsletter for the Children's Home Society of South Dakota, which received a record $55 million from Sanford in 2019, featured an illustration of him drawn by a child in appreciation of his support.

According to his foundation biography, Sanford has given almost $1 billion to Sanford Health, the nation's largest rural nonprofit healthcare system, including a $400 million gift in 2007 that was called the largest contribution ever to an American healthcare organization. After a $12.5 million gift this month from Sanford, the University of South Dakota's law school named itself after Sanford's friend and lawyer, David Knudson, the former state Senate majority leader.

Sanford has close ties to state and federal elected officials. He has spent more than $425,000 on political contributions, according to databases that track election spending, mostly to Republican causes and candidates including small sums to Donald Trump.

Affiliates of the health system have employed Kimberley Thune, the wife of the second-ranking Republican in the Senate, according to John Thune's financial disclosures. Thune's office didn't respond to requests for comment, and a woman who picked up Kimberley Thune's cellphone hung up on a ProPublica reporter.

Thune also lobbied for the health system, then called Sioux Valley Hospitals, after an unsuccessful Senate bid in 2002, according to disclosure records. Thune, whose campaigns have received at least $8,000 in donations from Sanford, has lauded the billionaire from the Senate floor, calling him "a giving man with a passion for making a difference in the lives around him."

Sanford splits his time between homes in Sioux Falls, San Diego, Scottsdale, Arizona, and Vail, Colorado. In a 2007 Forbes profile that Sanford cooperated with, executives described him as a colorful boss, gathering his employees in his Phoenix winter home, cooking them breakfast in his underwear, and taking them out for bike rides and nights out dancing. His golf shoes are inscribed with his nickname, WOLT, which stands for World's Oldest Living Teenager.

Doris Burke contributed reporting.

Do you have information about T. Denny Sanford or the investigation into him? Email robert.faturechi@propublica.org or isaac.arnsdorf@propublica.org or reach them on Signal/WhatsApp at 213-271-7217. Here's how to send tips and documents to ProPublica securely.

Update, Aug. 28, 2020: This article was updated to include comment from T. Denny Sanford's lawyer made to the South Dakota newspaper the Argus Leader.

The American Diabetes Association is creating an initiative to fight unnecessary amputations, which a ProPublica investigation found disproportionately affect Black diabetics.

This article was published on Thursday, August 27, 2020 in ProPublica.

By Lizzie Presser

Prompted by a ProPublica story that detailed how Black Americans with diabetes lose limbs at a rate triple that of others, the American Diabetes Association has included an initiative to prevent unnecessary amputations as part of an unprecedented campaign to reduce racial disparities in diabetes care.

"The ProPublica article raised the consciousness of what the problem is," said Tracey Brown, the CEO of the ADA. "Every four minutes, someone is losing a limb from diabetic complications. That's ridiculous. We have got to find a way to drive change."

The story highlighted obstacles to equitable care for diabetic patients at risk of amputation, from the government's decision not to endorse screening at-risk patients for vascular disease in the legs, to the inadequate incentives for certain specialists to move to underserved areas, to the health system's failure to consider limb-saving options before permitting surgeons to apply a blade.

In the weeks that followed publication, several congressional and state legislative offices reached out to the association to ask for guidance on drafting policy to reduce disparities in diabetic amputations. In response, the organization decided to build an agenda around the issue.

The ADA's Health Equity Now campaign, which addresses the cost of diabetes care, nutrition, discrimination and more, was motivated by the racial health disparities that have been exposed by COVID-19, which has hit Black Americans with diabetes particularly hard. As part of the project, the association has built a Health Equity Bill of Rights, asserting that all diabetes patients are entitled to affordable drugs, healthy food, the latest medical advances and other protections.

The right to avoid preventable amputations is the only complication of uncontrolled diabetes that is included in the list. The organization is sharing the document with policymakers, practitioners and patients as it begins to look toward policy change. It is also encouraging members of the public to ask their governors to support the project.

Dr. Ronald Dalman, the president of the Society for Vascular Surgery, said: "I commend the ADA for doubling down on this particular complication of poorly managed diabetes. It's a long overdue prioritization." He added that it's a "moment in time where we can leverage this concern about healthcare disparities to call out a very specific problem: the prevalence of amputation in certain subsets of the population."

Dr. Gary Puckrein, the head of the National Minority Quality Forum, a nonprofit focused on reducing healthcare disparities, said that the ADA's efforts are just a step. "The American healthcare system was organized during an era when inequality was acceptable and mainstream in American society," he said. "It's not that African Americans are sicker, it's that the healthcare delivered is unequal."

He hopes that the national conversation on health disparities will mirror the conversation about police violence against Black Americans. "You, in effect, have your knees on their neck in the healthcare system as well when you don't provide them with the care that they need."

Black patients were losing limbs at triple the rate of others. The doctor put up billboards in the Mississippi Delta. Amputation Prevention Institute, they read. He could save their limbs, if it wasn't too late.

Two weeks after publication of the story, Rep. Bennie Thompson, a Democrat from Mississippi, honored Dr. Foluso Fakorede, the main subject of the ProPublica article, for his work in reducing unnecessary amputations in Bolivar County, Mississippi. The acknowledgement, made in the House of Representatives, referenced ProPublica's findings.

The co-chairs of the Congressional Peripheral Artery Disease Caucus — Rep. Donald M. Payne Jr., a Democrat from New Jersey, and Rep. Gus Bilirakis, a Republican from Florida — have also begun work on a bill to address disparities in amputations, particularly for people with peripheral artery disease, a condition in which clogged arteries in the legs limit the flow of blood.

"The ProPublica article has brought strong awareness and real interest from a variety of parties — from the medical field and from patients and from potentially future patients," said a spokesman for Payne. "We have been working with Bilirakis and other members to move this forward, with the ultimate goal of introducing legislation."

Summer Blevins, deputy chief of staff for Bilirakis, added that their legislative ambition "is based on the basic principle that prevention, education and early intervention is best for the patient and also saves money."

The deaths of 18 residents of a New York nursing home highlight the continuing controversy over the Cuomo administration's decision not to count deaths in hospitals as nursing home deaths. The home denies the allegations.

This article was published on Tuesday, August 11, 2020 in ProPublica

By Joe Sexton and Joaquin Sapien

The nurse with the Columbia County Health Department recorded the COVID-19 deaths at nearby hospitals — two at Albany Medical Center on May 4, another at the same hospital two days later; one at Columbia Memorial Hospital on May 17, and another there two days later — and, along with her boss, concluded there was a pattern.

The people dying at the hospitals had been residents of a local nursing home, the Grand Rehabilitation and Nursing at Barnwell in the tiny town of Valatie, New York. In all, the nurse counted 18 deaths of residents over five weeks. She didn't have detailed medical records for the patients, but she noted that all had arrived at the hospital with orders saying no extraordinary measures were to be taken to keep them alive. As a result, she and the Columbia County health director developed a theory: "For me," said Jack Mabb, the health director, "it appeared they were sending people to the hospital so they wouldn't die in the facility."

A change in the way New York tabulated nursing home deaths could have incentivized such behavior, he said, making homes' records on COVID-19 containment appear better than they were.

In the early weeks of the pandemic, the state had counted these deaths by attributing them to the nursing home regardless of where they physically occurred. But in April — as the death toll related to nursing homes mushroomed, hitting as many as 250 deaths a day — that changed: The administration of Gov. Andrew Cuomo decided not to count residents who died of COVID-19 in hospitals as nursing home deaths, saying it feared that their deaths would be double-counted if they were recorded that way.

The administration insisted the move wasn't meant to suppress the numbers at nursing homes, facilities Cuomo had reassured the public were his top priority for protecting from the pandemic. In public testimony this month, Howard Zucker, the state's health commissioner, defended the decision and argued that New York had been as transparent about nursing home casualties as any state in the nation.

Today, more than 6,500 nursing home residents are known to have perished in New York facilities, some 6% of the state's nursing home population. The state declined to say how many additional residents died in hospitals after being sickened in nursing homes.

Mabb said that his department's nurse had sent reports about the deaths of Barnwell residents at local hospitals to state authorities, and that he had asked for an investigation. Some of the residents died soon after arriving at the hospitals, Mabb said, while others took longer to pass away. But the fact that all 18 had do-not-resuscitate orders or similar directives suggested to him that they had been sent to the hospitals with little hope of ever returning to the home. The department, Mabb said, shared its documenting of the deaths with the state.

"There are very few legitimate reasons for a nursing home to send seriously ill residents with do-not-resuscitate orders to a hospital unless there is a real chance that their conditions could be improved," Mabb said. "We flagged it for the state. We told the Department of Health we thought something big was going on."

Mabb said the state Health Department, which regulates nursing homes, has yet to tell him if it's investigating what happened to the Barnwell residents.

Bruce Gendron, a vice president of the company that operates the Barnwell nursing home and 15 others, rejected Mabb's claims that the home had sought to dump dying residents at local hospitals. He said that residents only would have been sent if they needed care beyond what the home could provide, and that those residents deserved every chance to survive.

Gendron said any scheme to inappropriately send residents to die elsewhere would have involved the home's medical director and several of its nurses, all of whom are licensed by the state and would have been putting their careers at risk.

Twice in May, state Health Department investigators conducted "complaint surveys" at the Barnwell home after scores of staff members and residents at the home tested positive for COVID-19.

The Department of Health website shows that inspectors found problems with the facility's ability to contain the virus: Uninfected residents were living alongside infected residents; residents suspected of having COVID-19 also were not separated. Some Barnwell staffers told the Health Department that they were confused about when they were supposed to wear masks and gloves or change out of old equipment and under what circumstances. The inspectors cited the facility and ordered a halt to additional admissions. Dozens of residents were eventually relocated.

Gendron first told ProPublica that the allegations of dumping dying residents at hospitals had been investigated by the state Health Department and found to be unsubstantiated. Asked to produce such a finding, Gendron referred to the inspections done in May, saying the absence of any findings related to hospital transfers proved the home had been cleared. Barnwell's quality of care related to COVID-19 had become a public controversy in May, prompting coverage in the local media, and Gendron said he assumed the state would have been alert to any other problems at the home, including signs of dumping residents.

The state's inspection reports make no mention of investigating hospital transfers. The Health Department did not respond to questions from ProPublica about whether it had investigated Mabb's allegations. ProPublica shared Gendron's version of events with the state, but again, the Health Department did not respond. Jill Montag, a department spokeswoman, appeared to be unaware of the allegations involving the home's dying residents, asking ProPublica to send along a record of them.

There is little doubt that Barnwell, a 236-bed facility in the Hudson Valley, was overwhelmed by the virus this spring. From March 30 through the first week of June, according to county statistics, scores of staff members and residents tested positive for the virus.

But trying to unpack what exactly unfolded at Barnwell lays bare the confusing and often conflicting available information about COVID-19's deadly path through the state's elderly population.

The county Health Department is responsible for identifying cases of COVID-19, and nursing homes are obligated to report such cases to it. But nursing homes are regulated by the state, and the county has a limited ability to make sure such facilities are responsibly reporting and managing outbreaks.

Mabb said he had only received notifications from the Barnwell home on two deaths inside the facility. The state Health Department says online that the death toll from the home is 12. Mabb said he thought the first infection at Barnwell had involved a staff member; the state has said the first case of COVID-19 at the facility involved a resident, but it can't say with certainty what role if any the resident played in the eventual outbreak.

Mabb said he has ultimately come to mistrust any information coming from either the state or officials with Barnwell. He said he counts the 18 deaths of Barnwell residents at the hospitals as nursing home deaths.

ProPublica contacted the three hospitals where Barnwell residents died, but none would talk about the deaths or the county's allegation that residents had been sent to them to avoid being recorded as nursing home fatalities.

As Gendron pointed out, decisions to send nursing home residents to the hospital for additional care are supposed to be approved by a home's medical director. He would not provide copies of such approvals involving the 18 residents who later died at hospitals, however, saying he didn't have the staff to do such work, and noted that some of the residents had been taken to the hospital after 911 calls, when a medical director's approval would not have been required.

Sorting out the events at Barnwell, it turns out, also involves another disputed state policy: the order from the Health Department that nursing homes accept medically stable COVID-19 patients being discharged from hospitals. The policy also barred patients from being tested to see if they were still positive for the virus.

The policy, enacted March 25, alarmed and angered many — nursing home operators, families of residents, elected officials worried about an already vulnerable population being subjected to additional possible harm. The state, after a blizzard of criticism, abandoned the order some seven weeks after implementing it.

Last month, the Health Department issued a report asserting that the policy had not significantly contributed to deaths of nursing home residents.

The report was met with open skepticism among nursing home personnel, epidemiologists, and Republican and Democratic officials in New York and Washington. Those lawmakers repeated their calls for a truly independent investigation of the state's handling of the COVID-19 crisis at its more than 600 nursing homes.

In the Health Department's report, which said more than 6,400 COVID-19 patients had been sent from hospitals to nursing homes under the policy, the state said the vast majority of the roughly 310 homes that accepted those patients had already had a case of COVID-19 among their staff members or residents. The report said the spread of the virus in the homes had been driven by infected staff members.

But the report made clear that dozens of homes had experienced no cases of COVID-19 before receiving a coronavirus patient from a nearby hospital. ProPublica asked the state to produce the data involving 58 homes that had not been affected prior to taking in a COVID-19 patient.

Days later, the state Health Department said the data in its report had been inaccurate. And several days after that, the department said updated information indicated that just six homes, not 58, had been free of COVID-19 prior to the arrival of a patient from a hospital.

The department would not answer an array of questions about how and why it had changed the data in its report, one it had used to defend its controversial policy. It would not say how what it had called a peer-reviewed study had relied on erroneous or incomplete data; it would not say how the new information had come to light.

It did say, though, that the Barnwell home was one of the facilities that did not have a case of COVID-19 among its staff or residents prior to the first arrival of a COVID-19 patient from a hospital. The state, however, would not say when that transfer occurred or if it had studied what role, if any, it had played in the eventual outbreak that overran the facility. The county recorded Barnwell's first COVID-19 case on March 30, two weeks before the surge in cases among both staff and residents.

Ron Kim, a Democratic state legislator from Queens, said he has no faith that the state has been honest about what happened as a result of its policy.

Kim, a member of the State Assembly's Health Committee, said he had taken an intense interest in the state's efforts to protect nursing home residents. One ZIP code in his Queens district had more nursing home deaths than any other in the state, he said. One of those deaths was a member of his family. Kim said he had filed Freedom of Information requests seeking all administration communications about nursing homes during the pandemic.

"The theme of the report was to shift the blame and scapegoat the workers and the families over the decision that the executive office had made," Kim said of the Health Department report made public last month. "It's clear that the executive office is directing and ordering up the report and data collection in a way that will give them what they want out of the report.

"They are trying their best to use government resources and the Department of Health to exonerate the executive office of any wrongdoing," Kim added.

Kim said given the state's lack of transparency, it was impossible to say whether what's alleged to have happened at the Barnwell facility may have been more widespread.

Kim and other lawmakers have said they know of no other state that counts nursing home deaths the way New York currently does.

Informed of Kim's specific claims, the state Health Department referred ProPublica to public statements made by Zucker, the department's commissioner.

On Aug. 3, Zucker testified before a joint hearing held by state legislators. He was grilled repeatedly about the state's seeming inability or unwillingness to answer basic questions about how many nursing home residents might have died to date in the pandemic.

The policy of not counting deaths in hospitals was revisited again and again.

Addressing Zucker in one exchange, State Senate Investigations Committee Chair James Skoufis, a Democrat from the Hudson Valley where Barnwell is located, said: "It's my opinion that your administration's definition truly misrepresents the scale of this crisis as a result. So let's try and get the full picture here and now: How many of New York's nursing home residents died in hospitals?"

Zucker insisted the state couldn't say because it didn't yet have a fully accurate count.

"You don't have a ballpark that you can give? So the total official number is about 6,500. Are we talking with the hospital deaths: 8,000? 10,000? 15,000? What are we looking at?" Skoufis countered.

"I'm not prepared to give you a specific number. We are in the middle of a pandemic obviously, we always forget about that sometimes," Zucker said. "We are looking at all the numbers, we are looking at the data, when the data comes in and I have an opportunity to piece through that, then I will be happy to provide that data to you and to the other members of the committee."

State Senate Health Committee Chairman Gustavo Rivera, a Democrat from the Bronx, suggested a final count wasn't needed to see what the administration was doing.

"It seems, sir, that in this case you are choosing to define it differently so you can look better," he said. "That is a problem, bro."

ProPublica asked the state Health Department if it had ever excluded fatalities of residents transferred to hospitals in counting deaths of nursing homes residents during outbreaks of the flu or other infectious diseases.

The state did not directly respond but said in a statement, "This is a global pandemic, the likes of which we have never seen before. There is no precedent."

Elaine Healy, acting president of the New York Medical Directors Association, said it shouldn't be hard for the state to have an accurate count of how many nursing home residents died of COVID-19 in hospitals. They'd counted these deaths in the nursing home totals early on, she said, and "the numbers would be quite easy to get from the hospitals."

The outbreak at Barnwell was one of two involving local nursing homes in Columbia County.

When the outbreak at Barnwell became public in early May, Patsy Leader, the town supervisor in nearby Kinderhook, called for the state to intervene, accusing Barnwell of trying to cover up the dumping of dying residents. Leader repeated the allegation in a brief interview with ProPublica.

Gendron, the Barnwell executive, eventually traveled to Barnwell to personally handle the crisis.

In a series of interviews and exchanges with ProPublica, Gendron said he was not aware of the state's claim that Barnwell's first case of COVID-19 involved a hospital transfer. He said the company had been alarmed by the Cuomo administration's policy requiring nursing homes to accept COVID-19 patients being discharged from hospitals. The chance that such patients could trigger or worsen an outbreak in nursing facilities was real, he said.

"We were very concerned," Gendron said. "It's a very contagious virus. And nursing homes provide very hands on care."

The challenge, he said, was only worsened by the fact that the state's policy prohibited homes from testing arriving hospital transfers to see if they were still positive and thus possibly contagious. Gendron said he was not even sure if the hospitals were obligated to notify the home that the arriving patient had been treated for COVID-19.

"One would think they should have disclosed that," Gendron said. "We always believed the best practice was to isolate any COVID residents. But we didn't even know who was or wasn't."

Anesthesiologist Claire Rezba started tracking lost health workers almost instinctively. Researchers and industry professionals say the lack of good official data on these deaths is "scandalous" and is putting lives in danger.

This article was published on Sunday, August 2, 2020 in ProPublica.

By Nina Martin

When police discovered the woman, she'd been dead at home for at least 12 hours, alone except for her 4-year-old daughter. The early reports said only that she was 42, a mammogram technician at a hospital southwest of Atlanta and almost certainly a victim of COVID-19. Had her identity been withheld to protect her family's privacy? Her employer's reputation? Anesthesiologist Claire Rezba, scrolling through the news on her phone, was dismayed. "I felt like her sacrifice was really great and her child's sacrifice was really great, and she was just this anonymous woman, you know? It seemed very trivializing." For days, Rezba would click through Google, searching for a name, until in late March, the news stories finally supplied one: Diedre Wilkes. And almost without realizing it, Rezba began to keep count.

The next name on her list was world-famous, at least in medical circles: James Goodrich, a pediatric neurosurgeon in New York City and a pioneer in the separation of twins conjoined at the head. One of his best-known successes happened in 2016, when he led a team of 40 people in a 27-hour procedure to divide the skulls and detach the brains of 13-month-old brothers. Rezba, who'd participated in two conjoined-twins cases during her residency, had been riveted by that saga. Goodrich's death on March 30 was a gut-punch; "it just felt personal." Clearly, the coronavirus was coming for healthcare professionals, from the legends like Goodrich to the ones like Wilkes who toiled out of the spotlight and, Rezba knew, would die there.

At first, seeking out their obituaries was a way to rein in her own fear. At Rezba's hospital in Richmond, Virginia, as at healthcare facilities around the U.S., elective surgeries had been canceled and schedules rearranged, which meant she had long stretches of time to fret. Her husband was also a physician, an orthopedic surgeon at a different hospital. Her sister was a nurse practitioner. Bearing witness to the lives and deaths of people she didn't know helped distract her from the dangers faced by those she loved. "It's a way of coping with my feelings," she acknowledged one recent afternoon. "It helps to put some of those anxieties in order."

On April 14, the Centers for Disease Control and Prevention published its first count of healthcare workers lost to COVID-19: 27 deaths. By then, Rezba's list included many times that number — nurses, drug treatment counselors, medical assistants, orderlies, ER staff, physical therapists, EMTs. "That was upsetting," Rezba said. "I mean, I'm, like, just one person using Google and I had already counted more than 200 people and they're saying 27? That's a big discrepancy."

Rezba's exercise in psychological self-protection evolved into a bona fide mission. Soon she was spending a couple of hours a day scouring the internet for the recently dead; it saddened, then enraged her to see how difficult they were to find, how quickly people who gave their lives in service to others seemed to be forgotten. The more she searched, the more convinced she became that this invisibility was not an accident: "I felt like a lot of these hospitals and nursing homes were trying to hide what was happening."

And instead of acting as watchdogs, public health and government officials were largely silent. As she looked for data and studies, any sign that lessons were being learned from these deaths, what Rezba found instead were men and women who worked two or three jobs but had no insurance; clusters of contagion in families; so many young parents, she wanted to scream. The majority were Black or brown. Many were immigrants. None of them had to die.

The least she could do was force the government, and the public, to see them. "I feel like if they had to look at the faces, and read the stories, if they realized how many there are; if they had to keep scrolling and reading, maybe they would understand."

It's been clear since the beginning of the pandemic that healthcare workers faced unique, sometimes extreme risks from COVID-19. Five months later, the reality is worse than most Americans know. Through the end of July, nearly 120,000 doctors, nurses and other medical personnel had contracted the virus in the U.S., the CDC reported; at least 587 had died.

Even those numbers are almost certainly "a gross underestimate," said Kent Sepkowitz, an infectious disease specialist at Memorial Sloan Kettering Cancer Center in New York City who has studied medical worker deaths from HIV, tuberculosis, hepatitis and flu. Based on state data and past epidemics, Sepkowitz said he'd expect healthcare workers to make up 5% to 15% of all coronavirus infections in the U.S. That would put the number of workers who've contracted the virus at over 200,000, and maybe much higher. "At the front end of any epidemic or pandemic, no one knows what it is," Sepkowitz said. "And so proper precautions aren't taken. That's what we've seen with COVID-19."

Meanwhile, the Centers for Medicare and Medicaid Services reports at least 767 deaths among nursing home staff, making the work "the most dangerous job in America," a Washington Post op-ed declared. National Nurses United, a union with more than 150,000 members nationwide, has counted at least 1,289 deaths among all categories of healthcare professionals, including 169 nurses.

The loss of so many dedicated, deeply experienced professionals in such an urgent crisis is "unfathomable," said Christopher Friese, a professor at the University of Michigan School of Nursing whose areas of study include healthcare worker injuries and illnesses. "Every worker we've lost this year is one less person we have to take care of our loved ones. In addition to the tragic loss of that individual, we've depleted our workforce unnecessarily when we had tools at our disposal" to prevent wide-scale sickness and death.

One of the most potentially powerful tools for battling COVID-19 in the medical workforce has been largely missing, he said: reliable data about infections and deaths. "We don't really have a good understanding of where healthcare workers are at greatest risk," Friese said. "We've had to piece it together. And the fact that we're piecing it together in 2020 is pretty disturbing."

The CDC and the Department of Health and Human Services did not respond to ProPublica's questions for this story.

Learning from the sick and dead ought to be a national priority, both to protect the workforce and to improve care in the pandemic and beyond, said Patricia Davidson, dean of the Johns Hopkins School of Nursing. "It's critically important," she said. "It should be done in real time."Bottom of Form

But data collection and transparency have been among the most glaring weaknesses of the U.S. pandemic response, from blind spots in the public health system's understanding of COVID-19 in pregnancy to the sudden removal of hospital capacity data from the CDC's website, later restored after a public outcry. The Trump administration's sudden announcement in mid-July that it was wresting control over hospital coronavirus data from the CDC has only intensified the concerns.

"We'd be the first to agree that the CDC has been deficient" in its data gathering and deployment, said Jean Ross, a president of National Nurses United. "But it's still the most appropriate federal agency to do this, based on clear subject-matter expertise in infectious diseases response."

The CDC's basic mechanism for collecting information about healthcare worker infections has been the standard two-page coronavirus case report form, mostly filled out by local health departments. The form doesn't request much detail; for example, it doesn't ask for employers' names. Information is coming in delayed or incomplete; the agency doesn't know the occupational status of almost 80% of people infected.

The data about infections and deaths among nursing home staff is more robust, thanks to a rule that went into effect in April that requires facilities to report directly to the CDC. The agency told Kaiser Health News that it is also "conducting a 14-state hospital study and tapping into other infection surveillance methods" to monitor healthcare worker deaths.

Another federal agency, the U.S. Occupational Safety and Health Administration, investigates worker infections and deaths on a complaint basis and has prioritized COVID-related cases about the healthcare industry. But it has suggested that most employers are unlikely to face any penalties and has issued only four citations related to the outbreak, to a Georgia nursing home that delayed reporting the hospitalization of six staffers and three Ohio care centers that violated respiratory protection standards. Of the more than 4,500 complaints OSHA has received about COVID-19-related working conditions in the medical industry, it has closed nearly 3,200, a

The Trump administration told hospitals to stop reporting data to the CDC, and report it to HHS instead. Vice President Mike Pence said the information would continue to be released publicly. It hasn't worked out as promised.

Data problems aren't just a federal issue; many states have fallen short in collecting and reporting information about healthcare workers. Arizona, where cases have been surging, told ProPublica, "We do not currently report data by profession." The same goes for New York state, though a report in early July hinted at just how devastating the numbers there might be: 37,500 nursing home employees, about a quarter of the state's nursing home workforce, were infected with the coronavirus from March through early June. Other states, including Florida, Michigan and New Jersey, provide data about employees at long-term facilities but not about healthcare workers more broadly. "We are not collecting data on healthcare worker infections and/or healthcare worker deaths from COVID-19," a spokesperson for the Michigan Health Department said in an email.

This problem is global. Amnesty International, in a July report, pointed to widespread data gaps as part of a broader suppression of information and rights that has left workers in many countries "exposed, silenced [and] attacked." In Britain, where more than 540 medical workers have died in the pandemic, the advocacy group Doctors' Association UK has begun legal action to force a government inquiry into shortages of personal protection equipment in the National Health Service and "social care" facilities such as nursing homes. And in May, more than three months after the first known medical worker's death, the International Council of Nurses called for governments across the world to start keeping accurate data on such cases, and for the records to be centrally held by the World Health Organization. The WHO estimates that about 10% of COVID-19 cases worldwide are among health workers. "We are closely following up (on) these cases through our global networks," a spokesperson said.

"Governments' failure to collect this information in a consistent way" has been "scandalous," said the council's CEO, Howard Catton, and "means we do not have the data that would add to the science that could improve infection control and prevention measures and save the lives of other healthcare workers. … If they continue to turn a blind eye, it sends a message that [those] lives didn't count."

So regular people, like Rezba, have stepped up with their makeshift databases.

Dr. Claire Rezba, an anesthesiologist who tracks the COVID-19 deaths of healthcare workers. (Carlos Bernate for ProPublica)

Rezba, 40, initially wanted a career in public health. While finishing her master's degree at Emory University in Atlanta and for a few months afterward, she worked as a lab tech at the CDC, analyzing nasal swabs to track cases of MRSA, the flesh-eating bacteria. But she decided she cared more about people than bugs, so she headed to Virginia Commonwealth University medical school in Richmond, graduating in 2009 with plans to specialize in the treatment of chronic pain.

During her residency at VCU, her first rotation was in the neonatal intensive care unit. "There was a little baby I helped take care of for three weeks. And the very last day of that rotation, his parents withdrew care. ... He was the first little person I pronounced dead. I went and cried in the stairwell after that." Her next rotation was in the burn unit, then the emergency department. "It seemed like death was just everywhere," Rezba said. Witnessing it "is something very separate from the rest of your life experiences. People look different when they're dying. It's not like TV. They don't look like they're sleeping. CPR is pretty brutal. Codes are pretty brutal."

She began keeping a list as a way to process the grief. "In residency, you record everything — your case logs, the procedures you do. It was just sort of second nature to record their names." Whenever a patient died she would make another entry in her notebook, then "I would kind of perseverate" — ruminate — "over their names." At the end of the year, she took the notebook to church. "I lit candles for them. I prayed. And then I let it go."

A decade later, Rezba was working full time as an anesthesiologist and raising three small children, her list-compiling days long past her, she thought. Then COVID-19 hit. The onetime infectious disease geek became obsessed with the videos leaking out of China — the teams of healthcare workers in full protective gear, the makeshift wards in tents, the ERs in chaos: "I knew early on that this was going to be a big problem." In her job, Rezba was often called upon to do intubations. "The possibility of not having enough PPE caused a lot of anxiety for her," said her husband, Tejas Patel, whom she met in medical school. "She would be the one, if we did hit that level of New York, who could potentially be at risk and bring it home to the kids."

As it turned out, Rezba's hospital wasn't inundated, nor did it experience the PPE shortages that plagued many healthcare facilities. But her anxiety didn't disappear; it just took a new shape. If healthcare workers were front-line heroes, she decided, her role was to search the trenches for the bodies left behind.

Rezba is the first to admit she's not great at technology; she rarely uses a computer at home. Patel discovered what she was doing because their iPhones and iCloud accounts are linked. "Whenever she saves a picture to the phone, I can see it. And I noticed a bunch of pictures of, you know, these strangers." He remembered how, in their student days, Rezba had insisted on humanizing the cadaver in their anatomy lab: "It upset her that it was just this anonymous person. Knowing his birthday and little things like that would make her feel better." Patel figured the photos were part of a similar coping strategy. "It wasn't until much later that I found out she was putting them up on Twitter."

Much of Rezba's digging happens in the middle of the night, when she can't sleep. She usually starts by Googling for local news stories; if she's still not tired, she turns to the obituary site Legacy.com. The hunt for a person's occupation and cause of death invariably takes her to Facebook, where she follows the trail to relatives and co-workers, to vacation slideshows and videos of old men serenading their grandkids on the guitar. Every few days, she checks GoFundMe, where she's recently been struck by the number of people who linger for weeks or months before dying. She's still discovering deaths that occurred in April and May. Anyone under 60 gets special scrutiny. "If the obit says, 'They died surrounded by family,' I usually don't bother trying to find out more, because those people didn't have COVID. The people with COVID are mostly dying alone."

Doctors and nurses are the easiest to find. "If someone worked in the laundry service at the nursing home, the family doesn't put that in," Rebza said. Yet it's the nonmedical staff that she feels a special obligation to uncover — the intake coordinators and supply techs, the food service workers and janitors. "I mean, the hospital's not going to function if there's nobody to take out the trash." Every so often, a news story mentions that several staffers from a particular nursing home or rehab center have died, without mentioning their names, and Rezba feels the rage start to bubble. "What it comes down to is, these are people that are making $12 an hour. And they get treated like they're disposable."

If she can't find someone's identity right away, or if the cause of death isn't clear, she'll wait a couple of days or weeks and try again. Because she comes across them anyway, she's started to keep track of other categories of COVID-19 deaths, like kids and pregnant women, as well as healthcare workers in their 30s and 40s who don't appear to have the virus but suddenly perish from heart attacks or strokes or other mysterious reasons. "I have a lot of those," she said.

Once she's certain she's found someone who belongs on her list, she selects a photo or two and writes a few words in their honor. Sometimes, these read like a scrap of poetry; sometimes, like a howl.

He enjoyed crazy-dancing at home to Bruno Mars, with the moves becoming wilder the more his family laughed.

As a child, she would wrap her clothes around Dove soap so they would smell like America.

This poor baby should have his mother in his arms. Instead he has her in an urn.

A preprint study out of Italy last week hinted at the kind of lessons researchers and policy makers might glean if they had more complete data about healthcare workers in the U.S. The study pooled data from occupational medical centers in six Italian cities, where more than 10,000 doctors, nurses and other providers were tested for coronavirus from March to early May. Along with basic demographic information, the data included job title, the facility and department where the employee worked, the type of PPE used and self-reported COVID-19 symptoms.

The most important findings: Working in a designated COVID-19 ward didn't put workers at greater risk of infection, while wearing a mask "appeared to be the single most effective approach" to keeping them safe.

In the U.S., many medical facilities are similarly monitoring employee infections and deaths and adjusting policies accordingly. But for the most part, that information isn't being made public, which makes it impossible to see the bigger picture, or for systems to learn from each other's experiences, to better protect their workers.

Imagine all of the opportunities it would present if everyone could see the full landscape, said Ivan Oransky, vice president for editorial content at Medscape, where a memorial page to honor global front liners has been one of the site's best-read features. "You could be doing some real great shoe-leather epidemiology. … You could go: 'Wait a second. That hospital has 12 fatalities among healthcare workers. The hospital across town has none. That can't be pure coincidence. What did this one, frankly, do wrong, and what's the other one doing right?'"

To Adia Harvey Wingfield, a sociologist at Washington University and author of "Flatlining: Race, Work, and Healthcare in the New Economy," some of the most pressing questions relate to disparities: "Where is this virus hitting our healthcare workers hardest?" Is the impact falling disproportionately on certain categories of workers — for example, doctors vs. registered nurses vs. nursing aides — on certain types of facilities, or in certain parts of the country? Are providers who serve lower-income communities of color more likely to become ill?

"If we aren't attuned to these issues, that puts everybody at a disadvantage," Wingfield said. "It's hard to identify problems or identify solutions without the data." The answers are especially important in Black and Latino communities that have suffered the highest rates of sickness and death — and where healthcare workers are themselves more likely to be people of color. Without good information to guide current and future policy, she said, "we could potentially be facing long-term catastrophic gaps in care and coverage."

Not only are Hispanics catching coronavirus at higher rates in Texas' largest county, they also suffer some of the worst outcomes.

The near-term consequences have also been enormous. The lack of public data about healthcare workers and deaths may have contributed to a dangerous complacency as infections have surged in the South and West, Friese said — for example, the idea that COVID-19 is no more dangerous than other common respiratory viruses. "I've been at this for 23 years. I've never seen so many healthcare workers stricken in my career. This whole idea that it's just like the flu probably set us back quite a way."

He sees similar misconceptions about PPE: "If we had a better understanding of the number of healthcare workers infected, it might help our policymakers recognize the PPE remains inadequate and they need to redouble their efforts. … People are still MacGyvering and wrapping themselves in trash bags. If we're reusing N95 respirators, we haven't solved the problem. And until we solve that, we're going to continue to see the really tragic results that we're seeing."

The misconceptions appeared to stretch to the highest reaches of the federal government, even as infections and deaths started surging again. At a White House event in July focused on reopening schools in the fall, HHS secretary Alex Azar told the people gathered, "healthcare workers … don't get infected because they take appropriate precautions."

Even some medical workers have continued to be in denial. A few days before Azar spoke, Twitter was abuzz over an Alabama nurse who worked the COVID-19 floor at a hospital by day and decompressed at crowded bars by night, where she often went maskless. "I work in the healthcare industry," she was quoted as saying, "so I feel like I probably won't get it if I haven't gotten it by now."

Piercing that sense of invulnerability — making the enormity of the COVID-19 disaster seem real — isn't only Rezba's mission. From The New York Times' iconic front page marking the first 100,000 American deaths to the Guardian/Kaiser Health News project "Lost on the Frontline," news organizations and social media activists have grappled with how to convey the scale of the tragedy when people are distracted by multiple world-shattering crises and the normal rituals for processing grief are largely unavailable.

"The point at which accountability usually happens is when our leaders have to reckon with the families of those who've been lost, and that has not happened," said Alex Goldstein, a Boston-area communications strategist behind the wrenching @FacesOfCOVID Twitter account, which has posted almost 2,000 memorials since March. With COVID-19, "no one has had to look in the eye of a crying parent who wants to show you a picture of their child or listen to someone telling you about who their mom or dad was. There has been no consequence. What would our policy decisions have looked like if [the people making them] had to come face to face with that death and loss in a more visceral way?"

It's a question that weighs especially heavily on healthcare professionals, who have seen, in the most visceral way possible, the worst that COVID-19 can do. Erica Bial, a pain specialist in the neurosurgery department at a Boston-area hospital, fell dangerously ill from COVID-19 in March, her respiratory symptoms lingering for more than six weeks. She lived alone and opted not to go to the hospital, in part because she worried about infecting other people. "At that point [in the outbreak], they would have intubated me, given me hydroxychloroquine and azithromycin and probably killed me." As her recovery dragged on, she wondered how other doctors were faring: "I couldn't believe that I was the only physician I knew who was sick." But as she searched online, "I could not find any data. I just started getting really frustrated at the lack of information and the disinformation. … And then I started thinking about, well, what happens if I die here? Will anybody know?"

Like Rezba, Bial has a background in public health; the Facebook page she created, COVID-19 Physicians Memorial, was an attempt to build "a network where there's accountability. I wasn't necessarily trying to create, you know, reverence or memorialization. I was trying to understand the scope of the problem."

Rezba soon began posting memorials on the page; as it grew to include more than 4,800 members, Bial asked her to help moderate it. Among the things the two women share is a determination to stick to facts. "I didn't want any politics and I didn't want any garbage," Bial said. "(Rezba) was 100% like-minded and trustable." She was also someone Bial could talk to, doctor to doctor, as she recovered. "It wasn't just two people obsessed with something kind of morbid," Bial said. "She was a source of support."

Emergency room doctor Cleavon Gilman also gained a following for his posts on Facebook, a diary about what he witnessed as an ER resident in the NewYork-Presbyterian hospital system, battling the virus as it engulfed Washington Heights. "It was just … overwhelming," he recalled. "We were intubating 20 patients a day. We had hallways filled with COVID patients; there was nowhere to put them." In the space of a few brutal days in late April, three of Gilman's colleagues died, including one by suicide. "When it's a colleague that you're taking care of and you know them as a person you've been on a journey with ... man, that's hard."

A tweet from Rezba's account sharing the work of Dr. Cleavon Gilman, who is also compiling healthcare workers who have died from COVID-19.

Though much of the media focus was on the risks faced by older patients, Gilman was struck by how many of the critically ill were in their 20s, 30s and 40s. In mid-April, his own 27-year-old cousin, a gym teacher at a New Jersey charter school, suddenly died; he went to the ER twice with chest pain but was diagnosed with anxiety and sent home, according to his relatives, only to collapse in his car on the side of the road.

As the crisis in New York City ebbed, Gilman could see trouble ahead in other parts of the country, including in Yuma, Arizona, where he was about to start a new job. It seemed vitally important to help younger people understand the risks they faced — and that they created for others — by not adhering to physical distancing or wearing masks, not to mention the dangers that healthcare workers faced from continuing shortages of PPE. So Gilman began gathering the memorials he saw on Twitter and Facebook, many of them found by Rezba or on @FacesOfCOVID, and organizing the dead on his website in the type of gallery that he knew would pack an emotional wallop. Then he went a step further, making the photos and obituaries — more than 1,000 people — sortable by age and profession.

"You begin to see a pattern here," he said. "When someone says, 'Oh people aren't dying, they're not that [young],' you can come back with actual names, actual articles, quickly. It's more powerful. You have your evidence there."

One of the most overtly political projects is Marked by COVID, formed by Kristin Urquiza in honor of her father, Mark, after her "honest obituary" of him went viral in early July. To Urquiza, who earned her master's in public affairs from the University of California, Berkeley, and works as an environmental advocate in the San Francisco area, "the parallels between the AIDS crisis and what is happening now with COVID are just mind-boggling [in terms of] the inaction by governments and the failure to prioritize public health." She and her partner, Christine Keeves, a longtime LGBTQ activist, hope the project will be both "a platform for people to come forward and share their stories" and the COVID-19 version of the anti-AIDS group Act Up.

They're also raising money on GoFundMe to help other families pay for obituaries; the second honest obit on their site was for a respiratory therapist in Texas named Isabelle Odette Hilton Papadimitriou: "Her undeserving death is due to the carelessness of politicians who undervalue healthcare workers through lack of leadership, refusal to acknowledge the severity of this crisis and unwillingness to give clear and decisive direction to minimize the risks of coronavirus. Isabelle's death was preventable; her children are channeling their grief and anger into ensuring fewer families endure this nightmare."

It's a trend that Rezba supports wholeheartedly. By the end of July, she had posted almost 900 names and faces of U.S. healthcare workers who had perished from COVID-19. She fantasized about what it would be like to leave the counting behind her. "It would be great if I could stop. It would be great if there was nobody else to find." But she had a backlog of dozens of stories to post, and the number of deaths kept climbing.

Ryann Grochowski Jones and Hannah Fresques contributed reporting.