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by Isaac Arnsdorf and Robert Faturechi
ProPublica is a Pulitzer Prize-winning investigative newsroom. Sign up for The Big Story newsletter to receive stories like this one in your inbox.
Federal and state authorities are still actively investigating billionaire T. Denny Sanford for possession of child pornography, according to new court records.
In 2020, ProPublica first reported that South Dakota authorities had started investigating the state’s richest man and had referred the matter to the U.S. Department of Justice. But it was not clear what the DOJ did with the referral or whether state investigators were still pursuing the case.
Now, in a new affidavit, the special agent in charge of the case for South Dakota’s Division of Criminal Investigation, Jeff Kollars, said that the probe remains open and that it included briefings as recently as Dec. 16 with “at least one jurisdiction.”
The affidavit does not specify the other jurisdiction. But in a separate filing on Monday, South Dakota Attorney General Jason Ravnsborg confirmed that both state and federal probes are active. “The investigation by state and federal authorities is ongoing,” Ravnsborg said in the court filing.
Sanford’s attorney did not respond to a request seeking comment. A spokesperson for the DOJ declined to comment.
The investigation of Sanford started because of a tip from the National Center for Missing & Exploited Children, the court records show. The center is a private nonprofit that operates a tip line for people and companies to report images of suspected child sex trafficking and abuse. The organization’s staff reviews the tips and refers them to law enforcement. A spokesperson for the organization declined to comment.
Investigators obtained five search warrants in 2019 and 2020 for Sanford’s email, phone and internet data. The documents do not specify what, if anything, investigators found in the searches.
ProPublica won access to the search warrants after more than a year of litigation that reached the state’s highest court. Sanford unsuccessfully asked the courts to conceal the search warrants, which are supposed to be publicly accessible under state law, and to block ProPublica’s reporting.
The warrants name Sanford “in the matter of possession and distribution of child pornography” and indicate that investigators and a judge concluded there was probable cause to believe that the data would contain evidence of a crime. The affidavits describing the basis for probable cause were not disclosed. The new court records were filed in response to ProPublica’s request to unseal the affidavits.
Sanford’s attorney, Marty Jackley, has previously declined to address Sanford’s conduct except to say the billionaire hasn’t been charged. In his latest filing, though, Jackley offered a new explanation: that Sanford’s email account was hacked and being used by someone else. The filing included examples of messages typical of email scams asking contacts to send money overseas, spanning 2016 to 2019. The filing described the emails as “exonerating evidence.”
Jackley was the state’s previous attorney general and is currently running for the office again. Jackley did not comment on how he would handle the case if he were to win the election for attorney general.
Sanford, 86, made his fortune from First Premier Bank and Premier Bankcard, a major issuer of high-interest credit cards for high-risk borrowers. He is one of the country’s biggest philanthropists, focusing on children’s organizations.
After ProPublica reported the existence of the child pornography investigation in 2020, some beneficiaries of Sanford’s charity initally distanced themselves. Others did not. South Dakota’s major hospital system still bears his name and accepted more than $650 million from him in 2021. The state’s governor, Kristi Noem, also accepted $100 million in scholarship funds from Sanford and his companies in 2021.
Do you have information about the Denny Sanford case that should be public? Contact Isaac Arnsdorf email@example.com 203-464-1409.
by Maryam Jameel
ProPublica is a Pulitzer Prize-winning investigative newsroom. Sign up for The Big Story newsletter to receive stories like this one in your inbox.
America’s Broken Food Safety System
On a cloudy day in November 2019, family and friends gathered in Austin, Texas, to mourn the passing of Lovey Jean Carter.
Carter, who had heart trouble and other ailments, had died at 67.
After the burial, many of the mourners returned to Rising Star Baptist Church to share a meal. The brisket was home cooked, but everything else — rotisserie chicken, potato salad and fried chicken — was bought ready to eat from local grocery stores. One of Carter’s brothers, James Monroe, had picked up 15 rotisserie chickens ordered from the Sam’s Club on the south end of Austin. It was all simple. And it was all supposed to be safe.
But that night dozens of the attendees were stricken by illness, overcome by nausea, cramping, vomiting and diarrhea, according to an investigation by Austin Public Health, which found that at least 61 people reported symptoms of food poisoning after the reception.
“Seemed like a dream that everyone was calling saying, ‘I’m sick, I’m sick, I’m going to the hospital,’” Joyce McDowell, one of Carter’s younger sisters, recalled.
Hundreds of people die every year in the United States after eating food tainted with salmonella, listeria and other dangerous pathogens. As wrenching as those deaths are, though, they are only the tip of the toll that food poisoning takes on the United States, where millions more people are sickened each year.
Salmonella is a leading culprit, with an estimated 1.35 million infections a year, resulting in thousands of hospitalizations, according to the Centers for Disease Control and Prevention.
For many of those victims, the effects can be life-altering. There can be kidney or gastrointestinal troubles that persist for years. There can be staggering hospital bills that for some patients, especially those without health insurance, seem to never let up.
And long after the worst of the illness has passed, anxiety about eating and the frustrating, often futile, search for answers can linger.
The rate of illnesses caused by salmonella hasn’t lessened in 25 years in the U.S., which continues to lag many countries in curbing the spread of the pathogen.
A ProPublica investigation of the U.S. food safety system found that federal regulators don’t have the power to stop meat and poultry contaminated with risky strains of salmonella from being sold to consumers. When the U.S. Department of Agriculture, which oversees meat and poultry, detects the pathogen, the agency can’t issue recalls or halt plant operations. It can only act if it is able to tie a case or cluster of cases of foodborne illness to a particular product. Inhibiting oversight further, a total of 15 federal agencies have a hand in food safety, with much of the responsibility split between the USDA and the Food and Drug Administration, a fragmented structure that critics say has impeded progress.
Nationally, the price tag in costs of treatment, lost work hours and premature deaths is estimated at $4.1 billion a year, according to the USDA.
“Salmonella is a very expensive pathogen, partially because it causes a lot of illnesses and partially because it can cause pretty severe disease as well,” said Sandra Hoffmann, a senior economist at the USDA. “You think, ‘Oh, foodborne illness is just a bellyache,’ but it is quite costly.”
The experience of Carter’s loved ones would end up a testament to the toll salmonella can take and to the obstacles to holding anyone accountable when illness strikes.
Austin Public Health opened an investigation into the outbreak shortly after it began, but investigators couldn’t pinpoint the source of the illness — a fate that befalls most such inquiries.
McDowell, now 68, hoped to fight through her illness at home. But the next day, she still felt sick. And that night, her watch sounded off with warnings that her heart rate had reached 130 beats per minute.
“I never felt so weak like that in my life,” she said.
By the time she arrived at Dell Seton Medical Center in Austin, others from the funeral were already at area hospitals. Before long, doctors had identified the source of the spate of illnesses as salmonella.
“You hear it advertised on the TV that so many people die a year of salmonella,” McDowell said, “but you never think that it’ll hit home. But it did.”
After the result of lab tests came back, Austin Public Health was notified on Nov. 5, three days after Carter’s funeral.
The health agency would eventually identify 84 people who attended the funeral reception. At least 26 of them were hospitalized, some for more than a week. The youngest person hospitalized was 1, the oldest 92. Servers who tasted the food also ended up sick.
The health agency interviewed 67 of 84 funeral attendees, asking each of them to recall what they had eaten, when they started feeling ill and what the symptoms were. The agency found that the rotisserie chicken was eaten by more of the sick people than any of the other foods served.
But as clear as the cause might have seemed to the victims, determining that the chicken was in fact the source of the salmonella outbreak still wasn’t going to be easy. One reason was that so many of the mourners fell ill. Only two of the people who were identified as having eaten at the funeral didn’t get sick, which left investigators unable to effectively distinguish between what the sick people ate and what the healthy people ate.
“It’s plausible that the chicken was the cause of the illness,” Jen Samp, a spokesperson for Austin Public Health, said in an email, “however, we did not have statistical evidence to prove which food was the culprit.”
A spokesperson for Sam’s Club, Erin Hulliberger, told ProPublica in an email that the company is “committed to providing high-quality products” and noted that the Austin investigators had said they were unable to determine the source of the illness.
The possibility of cross-contamination presented another investigative challenge. The brisket and chicken had been served with the same utensils, so if salmonella was originally present on one but not the other, the bacteria could have spread between them.
Monroe, who had picked up the rotisserie chickens and cut them up before the reception, was among those who ended up sick. He and his son sampled a few bites while prepping the food, and by the time the service was over, he was in such pain that he went home instead of going to the reception. It wasn’t until that night, as he heard of others who had become ill, that he realized that the rotisserie chicken might be the cause of all the sickness.
A little over a week later, after he had recovered, Monroe gave the health agency what seemed like a valuable clue: a whole rotisserie chicken that was one of the 15 purchased for the funeral reception but had been sitting, unopened, in Monroe’s refrigerator.
For investigators, an unopened package of a suspect food can be a vital, if rare, piece of evidence. Usually, the food suspected of causing illness has already been eaten, opened or discarded by the time illness emerges and an investigation is launched.
The health agency picked up the chicken from Monroe’s home, placed it on ice inside a double layer of biohazard bags and took it to a state laboratory in Austin for testing, according to Samp, who said the agency followed state protocols.
The state lab, however, determined the chicken wasn’t suitable for testing. A spokesperson for the Texas Department of State Health Services told ProPublica that Austin Public Health had collected two leftover rotisserie chickens from Monroe’s house — one in the unopened package and one in an opened package — and transported them in the same bag, creating the potential for cross-contamination. “We have very strict protocols that must be followed to ensure the integrity of the samples collected for testing,” the spokesperson, Lara Anton, said.
So what could have been the key to determining what made everyone sick ended up unexamined, underlining one of the challenges inherent in investigating foodborne illnesses.
“That’s the nature of the beast,” said Jack Guzewich, who for 11 years led the FDA’s foodborne disease surveillance and response program. “There’s so many other things that can go wrong that you end up inconclusive.”
Guzewich, who left the FDA in 2011 and worked as a consultant on foodborne disease investigations before retiring, said that had the leftover chicken been tested, it might have shown whether the chicken from Sam’s Club was carrying the same strain of salmonella that made everyone sick. “If the chicken sampling had been done correctly, they might have had the smoking gun and met the gold standard,” he said.
Based on samples from 26 of the victims, investigators determined that the funeral goers had been infected by a form of salmonella known as Saintpaul. It’s one of a relatively small number of salmonella types that account for most of the salmonella infections documented by the CDC. In 2008, Saintpaul, named for the Minnesota city where a scientist first isolated the strain, caused an outbreak that led to more than 1,400 infections nationwide. In the years since, the CDC has documented about 200 cases a year, about a fifth of them leading to hospitalization. (The CDC estimates that for every confirmed salmonella infection, almost an additional 30 go unreported.)
Even as the Austin health agency was investigating, some of the victims were pressing for answers on other fronts, contacting Sam’s Club and enlisting a personal injury lawyer.
Two days after the funeral, one relative reported the outbreak to Sam’s Club through a contact form on the company’s website. About a week later, another reported the outbreak to Sam’s Club by phone. In an email to one of the relatives and a voicemail to the other, representatives of Sam’s Club said the company had opened an “investigation.”
Patrick Monroe, the relative who filed a complaint online, said a Sam’s Club representative called him several weeks later and said because government investigators hadn’t tested the chicken, there was “nothing” the store could do.
Keith Carter, the relative who had reported the incident by phone, said he didn’t hear anything back from Sam’s Club. “I kept calling them, and they never returned my calls,” Carter said.
Hulliberger, the spokesperson for Sam’s Club, said the company takes safety seriously. “We have policies in place to comply with strict food safety controls, which help ensure the food we provide is safe,” she said.
She pointed out that the investigation had not determined what food caused many of the mourners to become ill. “Based on its investigation, Austin Public Health reported it was statistically impossible to implicate any of the food items from the funeral reception in 2019 as the source of illness that ProPublica is attempting to link to Sam’s Club,” she said.
In its report on the outbreak investigation, the health agency said it visited the store where the rotisserie chickens were purchased. It inspected its “kitchen and process” and did not note any violations.
A few of the relatives had found a firm willing to represent them in filing a lawsuit. It wouldn’t be quick or easy, but it might give them some answers and perhaps some compensation for the harm endured by so many of the mourners.
But two months later, the firm, now known as Pastrana & Garcia, backed out. After the health department said it was not going to be able to pinpoint the source of the food poisoning, the lawyer who had agreed to represent the victims, Raul Steven Pastrana, told them the case was all but unwinnable. “Without the health department’s willingness to identify one source of the poisoning, there are too many possible sources to meet the ‘more likely than not’ standard,” he wrote in a letter to the relatives. In an email to ProPublica, Pastrana’s firm declined to comment.
In Dale, a community about 30 miles south of Austin where many members of Lovey Jean Carter’s family live, some in houses right across from one another, memories of the salmonella outbreak are still fresh. Intense pain, diarrhea, nausea and vomiting overtook every household in the family in the hours after the funeral reception. The youngest member of the family, a 1-year-old, was vomiting through the night while her grandfather anxiously looked after her. Several family members were taken to hospitals in ambulances.
It felt as if death was stalking them, Carter’s mother, Lola Monroe, 94, said. “I think about that so often. My daughter’s funeral, and right after the funeral everybody got sick.”
Hattie Tibbs, 74, a family friend who was taken to a hospital in Kyle, said the illness brought her to tears. “Oh my, the pain,” she said, “I wouldn’t wish that on nobody.”
Getting out of the hospital and over their symptoms wouldn’t be the end. After the hospital stays and doctor’s visits, bills began to arrive. For some, insurance covered nearly everything. Others still owe money to this day.
Keith Monroe, who stayed in the hospital for one week and didn’t have health insurance at the time, was billed about $49,000, which he still owes. On top of his medical bills, Monroe, a handyman, lost work in the four months he was recovering.
Keith and Russell Carter, who are brothers and nephews of Lovey Jean’s, held out for three days after the funeral, trying their best to avoid seeking care.
“We really didn’t want the hospital bills. I knew if we went in, it’d be no telling how much it’d be,” Keith Carter, 55, said. “We just tried to tough it out, and the more we tried to tough it out, the worse it got.” Carter was vomiting, nauseated and completely dehydrated. His pain level, he said, reached a 10.
After about eight hours in the emergency room, his charges came to about $15,000, of which he was responsible for $1,700. Carter has five daughters and works as an equipment manager for the state’s health and human services agency by day and as an airline baggage handler at night. He had to take time off from both jobs when he got sick.
“When you got five girls and you got other bills — you got car payments, house payments — it’s money that you’re spending that you really don’t have,” Carter said.
Having to pay for being sickened by the funeral food made the hospital charges all the more frustrating. “I really didn’t want to pay anything, especially when you’re not at fault,” he said.
Today, Carter still suffers from abdominal pain. Tibbs had to change her diet because her stomach can no longer tolerate some of the foods it used to. And Keith Monroe has to use the restroom much more frequently because of lingering kidney problems.
Patrick Monroe said he is troubled that his relatives never got answers about what made them so sick. “I just don’t know how something like this got passed over.”
He is still paying off medical bills for himself and his two children. He doesn’t eat rotisserie chicken anymore. And he gets anxious at doctors’ offices, which bring back memories of all the illness the family endured. “I felt like I was going to die.”
by Alexis Marshall and Meribah Knight, Nashville Public Radio, and Ken Armstrong, ProPublica
ProPublica is a Pulitzer Prize-winning investigative newsroom. Sign up for The Big Story newsletter to receive stories like this one in your inbox.
Where Kids Meet the Rule of Law
Donna Scott Davenport, the juvenile court judge at the center of a controversy over the arrest and detention of children in Rutherford County, Tennessee, has announced that she will step down this year rather than run for reelection.
Earlier on Tuesday, ProPublica and Nashville Public Radio published a story about a move by some Tennessee lawmakers to remove Davenport from her post. About an hour after that story was published on ProPublica’s website, Davenport, in an email sent by the county’s spokesperson, announced that she will not be running for reelection this year. Instead, she plans to retire when her current eight-year term expires this summer.
Davenport, in announcing her retirement, said: “After prayerful thought and talking with my family, I have decided not to run for re-election after serving more than twenty-two years on the bench. I will always look back at my time as Judge as one of the greatest honors of my life and I am so proud of what this Court has accomplished in the last two decades and how it has positively affected the lives of young people and families in Rutherford County. I wish my successor the best and hope that this job provides them the same fulfillment it has provided me over the years.”
A bill that was introduced in the Tennessee legislature sought to remove Davenport, following reporting from Nashville Public Radio and ProPublica detailing how the county’s justice system was illegally arresting and jailing children.
Since 2000, Davenport has overseen the juvenile justice system in Rutherford County, where the county jailed kids in 48% of the cases referred to juvenile court — compared with the statewide average of 5%. State Sen. Heidi Campbell and state Rep. Gloria Johnson have said they are proposing legislation that could result in Davenport’s ouster. A bill starting the process was filed in the state Senate on Friday.
In Tennessee, state lawmakers have placed narrow limits on when children can be locked up prior to a delinquency hearing. But from 2008 to 2017, Rutherford County’s juvenile jail instituted its own system, called a “filter system,” under which any child deemed a “TRUE threat” could be detained. The jail’s written procedures never defined what a “TRUE threat” was. Davenport appointed the jail’s director, who also reports to her. In 2017, a federal judge ordered the county to put a stop to the filter system’s use.
“While judges are given judicial discretion to interpret laws, they are not allowed to make up their own laws,” Campbell said in a press conference on Monday.
State Rep. Vincent Dixie said at the press conference: “This is a slap in the face to us as legislators, because she made a policy into a law. And if you can do that, if anybody can do that, then why are we even in office?”
State Sen. Brenda Gilmore, former chair of Tennessee’s Black Caucus, highlighted the racial disparities among incarcerated children in Rutherford County during the press conference. Reporting from Nashville Public Radio and ProPublica found that Black children are not only jailed at a disproportionately high rate, but that the disparity is getting worse.
Several Democratic lawmakers, including Gilmore, said they’re concerned that the issues in the county are systemic.
“The people who are in charge have failed the children, and they’re still in charge,” Gilmore said.
Johnson said Davenport exercised an “appalling abuse of power.” She added, “How can we keep a judge in place who sees herself as carrying out God’s mission, rather than carrying out the laws of this state?”
The attempted ouster is considered an extreme measure.
Under Tennessee’s constitution, a judge can be removed only upon a two-thirds vote of both legislative chambers. A state report and news clips turn up only two instances of that happening in the last half century — once for a judge convicted of sexual assault, and once for a judge convicted of perjury and obstructing justice.
Campbell said if the resolution passes, a joint legislative committee would be formed with the power to subpoena witnesses. It would file a report to the state House and Senate, which would then vote separately on whether to remove the judge.
Voters selected Davenport as Rutherford County’s juvenile court judge after the county established it as an elected position in 2000; she has been the only person to hold the job thus far. In her last reelection bid, in 2014, she ran as a Republican.
Multiple Democratic lawmakers said Davenport’s removal isn’t a partisan issue. Campbell pointed to how Tennessee’s Republican governor has called for a review of Davenport. Eleven members of Congress, all Democrats, have also asked the U.S. Department of Justice to open a civil rights investigation of the county’s juvenile justice system.
In Tennessee, a similar measure to remove a judge was introduced last year by a Republican representative. The judge had ordered increased access to absentee ballots during the August primary elections. The effort to oust her failed, but the judge has since announced she will not seek reelection.
Nashville Public Radio reached out to Davenport for comment about the legislative proposal to remove her but did not receive a response. She has previously declined to respond to questions from the news organizations.
by Duaa Eldeib
The U.S. Response to COVID-19
By the time Cheryl Cosey learned she had COVID-19, she had gone three days without dialysis — a day and a half more than she usually waited between appointments. She worried how much longer she could wait before going without her life-saving treatments would kill her.
The 58-year-old Cosey was a dialysis technician for years before she herself was diagnosed with end-stage renal disease. After that, she usually took a medical transport van to a dialysis facility three days a week. There, she sat with other patients for hours in the same kind of cushioned chairs where she’d prepped her own patients, connected to machines that drew out their blood, filtered it for toxins, then pumped it back into their fatigued bodies.
Her COVID-19 diagnosis in the pandemic’s first weeks, after she’d been turned away from a dialysis facility because of a fever, meant Cosey was battling two potentially fatal diseases. But even she didn’t know how dangerous the novel coronavirus was to her weakened immune system.
Had she realized the risks, she would have had her daughter Shardae Lovelady move in. Just the two of them in Cosey’s red brick home on Chicago’s West Side, looking out at the world through the sliding glass door in the living room, leaving only for her dialysis.
After Cosey’s positive test in April 2020, Lovelady had to take her mother to a facility that treated patients with suspected or confirmed COVID-19. The facility fit her in for one of its last appointments the next day.
At that point, Cosey had gone more than four days without dialysis.
Four hours later, after Cosey completed her treatment, Lovelady returned to the nearly deserted building to bring her mother home, the sun having long disappeared from the sky. Cosey, dressed in a sweater and a green spring jacket, was disoriented, her breathing sporadic.
Alone with her mother on the sidewalk, Lovelady ran inside to ask workers for help getting Cosey out of her wheelchair and into her car.
“They offered no assistance,” Lovelady said. “They treated her as though she was an infection.”
(A spokesperson for the facility said employees aren’t allowed to help patients once they leave, for safety reasons.)
As Lovelady waited for paramedics to arrive, she grabbed a blanket from her car to wrap around her mother.
“My mother has COVID. I know she has COVID, but I didn’t care,” Lovelady said. “I hugged her and just held on until the ambulance came.”
Then she followed the flashing lights to the hospital.
In the three decades before the pandemic, the number of Americans with end-stage renal disease had more than quadrupled, from about 180,000 in 1990 to about 810,000 in 2019, according to the United States Renal Data System, a national data registry. About 70% of these patients relied on dialysis in 2019; the other 30% received kidney transplants.
The Midwest stood out as the region with the highest rate of patients with the disease, and Illinois had the nation’s third highest prevalence after Washington, D.C., and South Dakota, according to the Centers for Disease Control and Prevention.
A rare bright spot was the downturn in the death rate. Although diagnoses have been going up, death rates for patients who are on dialysis have declined since the early 2000s.
Then COVID-19 struck. Nearly 18,000 more dialysis patients died in 2020 than would have been expected based on previous years. That staggering toll represents an increase of nearly 20% from 2019, when more than 96,000 patients on dialysis died, according to federal data released this month.
The loss led to an unprecedented outcome: The nation’s dialysis population shrank, the first decline since the U.S. began keeping detailed numbers nearly a half century ago.
They were COVID-19’s perfect victims.
“It can’t help but feel like a massive failure when we have such a catastrophic loss of patients,” said Dr. Michael Heung, a clinical professor of nephrology at the University of Michigan. “It speaks to just how bad this pandemic has been and how bad this disease is.”
Before most patients reach advanced kidney failure, they are diagnosed with diabetes, hypertension or a host of other underlying conditions. Their immune systems are severely compromised, meaning they are essentially powerless to survive the most dangerous infections.
Many are old and poor. They also are disproportionately Black, as was Cosey. A 2017 study called end-stage renal disease “one of the starkest examples of racial/ethnic disparities in health.” Those inequities carried through to the pandemic. Dialysis patients who were Black or Latino, according to federal data, suffered higher rates of COVID-19 by every metric: infection, hospitalization, death.
Their deaths went largely unnoticed.
To get their treatments, the majority of dialysis patients in the U.S. must leave the relative safety of their homes and travel to a facility, often with strangers on public or medical transportation. Once at the dialysis center, they typically gather together in a large room for three to four hours.
The fear of contracting the virus was enough to keep many from venturing out for medical care, including those already on dialysis and those set to get the treatment for the first time. Exactly how long patients can go without dialysis depends on a number of factors, but doctors generally begin to worry if they miss two of their thrice-weekly sessions.
Dr. Kirsten Johansen, director of the United States Renal Data System, said the rates of people starting dialysis had been relatively stable until the pandemic. “Then the floor fell out,” she said in an interview.
COVID-19’s collateral damage played out in other ways as well. It meant that people delayed going to the hospital for everything from heart disease to cancer. For dialysis patients, whose life expectancy in some cases is three decades shorter than the general population, the results were calamitous. Hospitalizations of dialysis patients for reasons unrelated to COVID-19 dropped 33% between late March and April of 2020, federal data shows.
Dr. Delphine Tuot, a nephrologist and associate professor at University of California San Francisco and Zuckerberg San Francisco General Hospital and Trauma Center who focuses on vulnerable populations, found herself pleading with some of her patients to come in for their regular dialysis appointments.
One of them was a 60-year-old man whose shortness of breath landed him in the hospital in February. Doctors scheduled dialysis three times a week, and though he was initially resistant, Tuot said, he came around once he realized he would die without it.
Still, he missed appointments. When Tuot followed up, he told her he was afraid to leave the house because he was caring for his wife who had cancer, and he didn’t want to contract COVID and bring it home to her. Soon a cycle began. He skipped treatments, fluid built up in his body and an ambulance rushed him to the hospital because he couldn’t breathe. He got dialysis, was sent home and got back on track.
When cases surged and the delta variant took hold this summer, the cycle restarted — until he skipped dialysis for three weeks in a row, so long that his heart couldn’t recover, according to Tuot. He died last month.
Despite early efforts to mask and isolate patients at dialysis facilities, one study found the rate of COVID-19 hospitalizations of dialysis patients from March to April 2020 was 40 times higher than the general population.
Even with skyrocketing hospitalizations, it took three months after vaccines were approved before federal officials provided vaccinations to dialysis clinics, despite advocacy groups urging that this high-risk population be prioritized.
Although dialysis centers were swift to implement safety protocols in the pandemic’s early days, some facilities didn’t follow their own infection control policies, including washing hands properly, keeping workers home when sick or disinfecting equipment, federal inspection records show.
And home dialysis, which has been shown to be safer for patients during the pandemic, is out of reach for many, especially Black and Latino patients. Nephrologists had pushed for greater access to home dialysis before the pandemic; that need is more apparent now than ever, Tuot said.
“The fact that individuals had to go to a center with other individuals who are equally immunocompromised and had to get to that center, whether that was by public transportation or by van transportation, it’s clearly additional risks,” Tuot said. “Bottom line, they are very vulnerable. They’re very sick.”
The ambulance took Cosey to Chicago’s Rush University Medical Center. Lovelady filled in the staff on her mother’s medical history of end-stage renal disease, high blood pressure and asthma. The next day, Cosey called her daughter from her hospital bed. Lovelady noticed marked improvement from the night before.
“She sounded like herself,” Lovelady said. “We joked around a little bit. I asked her what kind of medicine she was on. She said they started her on dialysis.”
One by one, Lovelady added her sister, cousin and brother to the call. They told Cosey she had scared them, but now that she was doing better, they teased that they needed her to come home to bake her famous cheesecake. Her grandchildren hadn’t stopped asking about her either. They missed movie nights at Cosey’s house, when she made them popcorn and covered the floor with blankets.
Cosey’s boisterous laugh reassured them.
When Lovelady sensed her mother tiring, she told her she’d call her back the next day.
“Go ahead and get some rest,” she said.
While the arrival of the pandemic rocked the health care system as a whole, the effect on dialysis facilities has received little attention.
The Centers for Medicare & Medicaid Services typically monitor the facilities through routine inspections and surprise visits to investigate specific complaints. But federal officials are two years overdue on more than 5,000 inspections at dialysis facilities across the country, Medicare data shows, and three years behind on more than 3,000 of them. Since the start of 2020, the number of inspections to dialysis facilities by government officials fell by more than 30% from the previous two years, ProPublica found. Complaints made up a larger portion of investigations. In 2019, 35% of total visits were in response to complaints. Last year, it jumped to 51%.
A spokesperson for the Centers for Medicare & Medicaid Services said in a statement that the pandemic forced the agency to temporarily suspend or delay inspections for non-urgent complaints and routine inspections to focus on infection control and critical concerns that placed patients in immediate jeopardy. The agency is working with states, which act on behalf of federal officials, to address the resulting backlog, the spokesperson said, but “nearly all state agencies report insufficient resources to complete the required, ongoing federal workload.”
The spokesperson said “the COVID-19 pandemic has presented a unique challenge unlike any other in history and has impacted our routine oversight work,” adding that “complaint investigations remain our first priority to ensure we address the immediate needs of patients receiving care in dialysis facilities.”
Insufficient funding has compounded those challenges. The budget for inspections has “been flatlined” since fiscal year 2015, while the number of dialysis facilities has increased by 21% to nearly 8,000 today, according to the agency. After several years of requesting more money, the centers were approved to receive an increase for fiscal year 2022.
When investigators did inspect dialysis facilities, they found some violations specific to COVID-19 and others that involved general safety lapses, according to federal records from March 2020 to July 2021.
A dialysis patient who started treatment just before the pandemic died after a nurse at a Kentucky facility failed to properly dilute an antibiotic, according to inspection reports. Minutes after the medicine began dripping through an IV, the patient said: “My body is on fire! It’s going through my whole body,” records show.
At a New York facility, another patient died after losing more than 1 1/2 pints of blood when their catheter became disconnected, according to federal records. That same facility underreported its number of deaths in the first 11 months of the pandemic by 16 people.
Federal officials issued their most serious citation to an Indiana facility for refusing to provide dialysis to a patient suspected of having COVID-19. The patient’s previous dialysis had also been cut short because their assisted living facility did not provide them transportation after 9:15 p.m. So they did not receive a complete treatment.
An estimated 5% to 10% of end-stage renal patients live in congregate settings, such as nursing homes or assisted living facilities. The same factors that led to nursing home populations being decimated — age, health, difficulty isolating — applied to those dialysis patients. In the first months of the pandemic, they contracted the virus at a rate more than 17 times higher than those who lived independently, according to one study.
Workers at those facilities weren’t immune either. Oluwayemisi Ogunnubi, 59, worked as a nurse administering dialysis to patients inside a nursing home on Chicago’s South Side. A Nigerian immigrant, she had sent money home to pay for her children’s schooling until she was able to bring them to the U.S. Her smile and supportive nature made her popular among her coworkers, according to an official at Concerto Renal Services, the dialysis company where she worked.
On April 21, 2020, Ogunnubi’s body began to ache, and she was sent home early from work. She was later taken to a hospital, where she tested positive for COVID-19. She died three days later, federal and county records show.
Occupational Safety and Health Administration officials cited Concerto, and levied a penalty of $12,145. The company provided employees who performed dialysis on patients with N95 respirators, but investigators found that Concerto’s written procedures weren’t complete and that the company had failed to provide medical evaluations that ensured employees knew how to use the respirators.
Two other Concerto employees, including one who fell ill the same day as Ogunnubi, contracted COVID-19 at the time but survived. Within two weeks of Ogunnubi’s death, 10 residents at the nursing home died of complications related to COVID-19, according to Cook County Medical Examiner records. Half had kidney failure.
Kyle Stone, Concerto’s executive vice president and general counsel, said the first and only COVID-related death of an employee shook the company. Stone said Concerto “made a difficult choice” to use respirator masks without providing medical evaluations to employees, but it “was clearly the correct choice under the circumstances.”
If Concerto had been required to fulfill every aspect of OSHA requirements for a written policy that early in the pandemic, he said, the company would not have been able to provide the respirator masks, “almost certainly resulting in greater risk of harm and death.”
OSHA’s failure to “see and appreciate” the trying circumstances at the time, Stone said, was “baffling and disappointing.” Concerto eventually settled with OSHA, which downgraded the violation and reduced the penalty to $9,000.
“We are quite proud of our work in 2020 during the eye of the COVID storm,” Stone said.
As devastating as the pandemic has been, many experts say it could have been worse. Dr. Alan Kliger, a clinical professor of medicine at Yale School of Medicine, co-chaired the American Society of Nephrology COVID-19 Response Team that held weekly calls with chief medical officers from 30 or so dialysis companies, including the largest two, DaVita and Fresenius. The facilities, Kliger said, implemented universal masking and patient screenings before the CDC recommended them. They also treated COVID-19 patients in separate shifts or at specifically designated isolation clinics.
“There’s been a tremendous amount of collaboration and sharing of information and uptake of best practices in this group of competitive companies,” Kliger said. “They really rallied together to protect patients.”
Epidemiologist Eric Weinhandl said that there’s another battle on the horizon with the omicron variant spreading rapidly, which he finds especially worrisome given how federal officials failed by not distributing vaccines to dialysis facilities in December 2020.
“It’s heartbreaking because you look at this, and much like nursing home residents, these patients are completely vulnerable. But they still have to go to a dialysis facility three times a week,” Weinhandl said. “Why wouldn’t you prioritize this population?”
The CDC said in a statement that “demand exceeded supply” when vaccines were first authorized and “as supply increased and states adopted CDC’s recommendations, older adults and those with underlying health conditions began being prioritized.”
It wasn’t until March 25 that the Biden administration announced it was partnering with dialysis facilities to send vaccines to patients at the centers.
Now, Weinhandl wonders if dialysis patients will be a priority if the federal government approves a second round of boosters for high-risk patients.
“Is there a plan? Because I think that there should be,” he said. “I think this is getting pretty predictable. Every time COVID surges, you see the dialysis population’s excess mortality surge with it.”
Sometimes the frailty of dialysis patients is no match for COVID-19’s brutality.
Oscar and Donna Perez were the kind of siblings who loved each other without judgment or condition. After Oscar began dialysis in 2018, Donna picked him up from his appointments three nights a week. She cut his toenails when his feet were too swollen for him to reach and massaged them when the pain woke him up at night.
He was her son’s godfather, her best friend who shared his love of music with her — especially the 1960s R&B singer Billy Stewart — and annoyed her in the way only brothers can, swatting her feet off chairs just as she got comfortable and pestering her with questions when she was deep into Instagram.
But Oscar Perez was sick. In addition to his failing kidneys, the 38-year-old Latino father struggled with hypertension, diabetes and congestive heart failure. In early January, doctors performed coronary bypass surgery. He was not yet eligible for the vaccine, but the hospital tested him for COVID-19 when he was admitted. He was negative.
He went home on Jan. 18, the same day as the wake for his uncle, who, his family said, died after he missed too many dialysis appointments. But the next day, Oscar collapsed at home, confused and mumbling in pain, with signs that the coronavirus was flourishing in his lungs. He was rushed back to the hospital. A doctor called to tell Donna Perez that her brother had tested positive and needed to be intubated.
On Jan. 31, doctors called Donna again and told her that her brother’s condition was declining fast. She picked up her parents, another brother and his girlfriend, and headed to the hospital to visit Oscar from outside the glass door of his room. They told doctors to try to resuscitate him if his heart stopped.
That night, after they returned home, Donna Perez’s phone rang one more time. Oscar’s doctor said he probably wasn’t going to make it through the night. This time, they could visit him in his hospital room in PPE.
Seeing her brother up close, swollen and helpless, she leaned in, hugged him, and said, “I can tell you’re tired. You can go.” Donna promised to take care of his daughter.
Her family pushed back and said she had to tell him to be strong.
Donna told them they needed to let Oscar go. He died a few hours later.
“This disaster is one that befalls dialysis patients, with diabetes especially, regularly,” Dr. David Goldfarb, clinical director of the nephrology division at NYU Langone Health in New York City, who reviewed Oscar Perez’s medical records for ProPublica.
“Of course, it’s possible to do better,” he continued. “Given his age, it’s really tragic.”
The advent of technology to filter a patient’s blood revolutionized kidney care in the 1950s, and people lined up to get access to the limited number of machines. In 1960, one hospital created its own admissions panel, later nicknamed the “God committee,” to review cases to decide who would receive the groundbreaking treatment.
Twelve years later, Congress approved legislation that created the Medicare End Stage Renal Disease program, which guaranteed coverage of medical care, including dialysis and kidney transplants. It remains the only disease-specific Medicare entitlement program, credited by some as possibly saving more lives than any other federal government program. Generally, Medicare only covers those over age 65 and the disabled, but this program is available to people of all ages with end-stage renal disease.
Total Medicare-related spending in 2019 on end-stage renal disease patients topped $50 billion. Even with that budget, the agency hasn’t been able to fix persistent health disparities. That year, Black patients were more than four times more likely than their white counterparts to have the disease.
Black patients also progressed from chronic kidney disease to end-stage renal disease three times as often as white patients. Yet they are less likely to start off their dialysis treatments on a waiting list for a transplant — or eventually receive one from a living donor — than white patients.
In a statement, Medicare said it is working to address the disparities and said it is “committed to ensuring the health and safety” of all its dialysis patients.
Another area of concern is home dialysis, which research has shown is cheaper than in-center dialysis and offers similar or better survival rates, enhanced quality of life and greater flexibility. Barriers to home dialysis affect all patients, but the percentages of Black and Hispanic patients receiving home dialysis in 2019 were 10% and 11% respectively, compared with white and Asian patients at 17% each.
The push for closing that gap has gained traction, bolstered by federal data that found COVID-19 hospitalizations rates of patients who underwent home dialysis from late March to June 2020 were between one-quarter and one-third those of patients traveling to dialysis facilities.
“We do have to figure out a way to do better because we’re really, in essence, causing harm, when we’re not able to divert proper resources to patients who most require them,” said Dr. Kirk Campbell, a nephrology professor and vice chair of medicine for diversity, equity and inclusion at the Icahn School of Medicine at Mount Sinai in New York City.
Some patients don’t have the space to store the supplies needed for home dialysis. Others are overwhelmed by the prospect of having to keep the area around the catheter clean to prevent infection. But, Campbell said, that’s where patient education comes in. The most common type of home dialysis, called peritoneal dialysis, often is done at night while the patient is sleeping and does not involve blood flowing outside the body.
While home dialysis isn’t possible for all patients, some doctors are hesitant to recommend it at all, in part because the clinicians lack the training, experience or a certain comfort level with it. That’s especially true, Campbell said, for patients of color and those from disadvantaged backgrounds. There’s often an unconscious bias that those patients won’t be able to handle it, he said.
Campbell and others said it’s critical that clinicians receive additional training in home dialysis. He leads one of the few nephrology fellowship programs in the country where doctors can spend an extra year specializing in home dialysis. The results have been so promising, he said, that they hope to expand.
In July 2019, the Trump administration issued an executive order aimed at revamping kidney care in the United States through the Department of Health and Human Services’ Advancing American Kidney Health initiative. The goals of the initiative were lofty — some say unrealistic — and included having 80% of new end-stage renal disease patients in the U.S. receive in-home dialysis or transplants by 2025. In 1972, the year the Medicare program passed, 40% of patients were on home dialysis. Currently, about 13% of patients are receiving dialysis at home.
Starting January, the Centers for Medicare & Medicaid Services will offer facilities greater reimbursement for improving their home dialysis rates for low-income patients.
Some observers say the change doesn’t go far enough. In September, U.S. Rep. Bobby Rush, an Illinois Democrat, and Rep. Jason Smith, a Republican from Missouri, proposed legislation that would require Medicare to pay for workers to assist patients who need additional help with home dialysis. The measure, which was introduced without much fanfare, also calls for greater patient education around the treatment and a federal study analyzing racial disparities.
Hong Kong, where about three in four patients are on peritoneal dialysis, is a global leader in home treatment. Patients there receive peritoneal dialysis first unless there is a medical reason that would preclude it.
Dr. Isaac Teitelbaum, a nephrologist who has been the medical director of the home dialysis unit at the University of Colorado School of Medicine since 1986, said expanded training for clinicians and incentives for patients, including a reduced co-pay or a tax credit, could encourage more patients to dialyze at home.
“You don’t live just so you can do dialysis. You do dialysis so that you can enjoy life,” he said. “You do dialysis so that you can watch your children and grandchildren grow up and so that you can participate in family events and go on vacations.”
Cheryl Cosey was not offered home dialysis, her family said. Shardae Lovelady said it might have made all the difference for her mother.
Cosey’s health deteriorated quickly after the call from her hospital bed. Doctors transferred Cosey to the intensive care unit, put her on a ventilator and gave her medication to push the oxygen from her lungs into her bloodstream, according to hospital records.
The family braced themselves. Lovelady drove to Minnesota to pick up her sister. She gathered everyone for a big dinner the way her mother used to do.
Lovelady and her sister stayed up late talking, finally dozing off when the house quieted.
When the phone rang at three in the morning, Lovelady recognized the hospital’s 312 area code.
Everything she had done to prepare for that moment suddenly vanished, and she allowed herself to hope.
The call was short. She never even flipped on the bedroom light. She turned to her sister, who was asleep next to her, and nudged her awake.