Stanford Medicine officials relied on a faulty algorithm to determine who should get vaccinated first, and it prioritized some high-ranking doctors over patient-facing medical residents.

This article was published on Friday, December 18, 2020 in ProPublica.

By Caroline Chen

For years, JaMarcus Crews tried to get a new kidney, but corporate healthcare stood in the way. He needed dialysis to stay alive. He couldn’t miss a session, not even during a pandemic.

This article was published on Tuesday, December 15, 2020 in ProPublica.

By Lizzie Presser

Last winter, JaMarcus Crews forced his feet, however numb, to walk a paved public track in the town of Centreville, Alabama, until his calves cramped and sweat bloomed across his T-shirt. He knew the route well, from Library Street to Hospital Drive. He’d walked it as a kid, when he was diagnosed with Type 2 diabetes and determined to shed weight. With freckled cheeks and soft eyes, JaMarcus was built big: 6-foot-1, wide shoulders, a round torso on skinny legs. Now, at the age of 36, he was back again. The diabetes had destroyed his kidneys, and he was trying to slim down so that he could get a transplant.

On Tuesdays, Thursdays and Saturdays, from 9:30 a.m. to 1:30 in the afternoon, JaMarcus attended a clinic in Tuscaloosa operated by DaVita, one of two for-profit giants in American dialysis. About 20 patients lined the room as clear plastic tubes, coursing with blood, snaked from each person’s arm or neck into a machine. The dialyzers cleaned the waste from their bodies, which their kidneys could no longer do. When it was over, and all anyone wanted was sleep, JaMarcus drove to the wide parking lot at Target to wait for his cashier’s shift. He missed working at the bank, but a nine-to-five was no longer possible.

A stress test had recently suggested that plaque had built up in his blood vessels, giving him coronary artery disease. It was common for patients with kidney failure. If his heart was weakening, he didn’t have much time to get a kidney, but it sometimes felt as if all he did was wait. Of the roughly half a million Americans who depend on dialysis, less than 14% have made it onto a waitlist for a transplant from a deceased donor. JaMarcus had not. He’d been kept off for an array of reasons: spotty insurance, referrals that never came, misdirection about losing weight and what he needed to do to qualify. The first time we spoke, he told me several times: “Dialysis is not for life.” He was convinced that, unless he got a kidney very soon, he was going to die.

JaMarcus searched for diversions. At night, after his wife, Gail, fell asleep, he sneaked out of the house with his teenage son to drive the empty freeways and cruise by the shuttered brick downtown, letting the cold wind hit his skin. In the afternoons, when he shopped for groceries, he drove to the Walmart Supercenter instead of the closer shops, because he enjoyed the bright lights and people-watching, as if it were a mall. JaMarcus didn’t tell his wife or son that he was making calculations in his head: most people didn’t survive five years on dialysis. He was nearing seven. His mother had died in year eight.

No matter how much he tried to go a different way, JaMarcus was being pulled along the same course, one laid out for him at birth. Black Americans are more likely to be born to mothers with diabetes, which predisposes them to the condition. They have lower rates of insurance coverage and can’t see doctors or afford medication as regularly, so diabetes and hypertension are more likely to cause complications like kidney disease. Even clinical care can work against them; doctors estimate kidney function using a controversial formula that inflates the scores of Black patients to make them look healthier, which can delay referrals to specialists or transplant centers.

Although chronic kidney disease affects people of all races at similar rates, Black Americans are three to four times more likely than white Americans to reach kidney failure. Even at the final stages of this disease, they are less likely to get a transplant. It is one of the most glaring examples of the country’s health disparities, one that Tanjala Purnell, a Johns Hopkins epidemiologist and health equity researcher, calls “the perfect storm of everything that went wrong at every single step.”

When patients get to dialysis, they enter a system in which the corporations that stand to profit from keeping them on their machines are also the gatekeepers to getting a transplant. DaVita and Fresenius, its main competitor, control about 70% of the dialysis market. Though most patients rely on staff at these clinics, and the kidney specialists they work with, to educate them about their options and refer them to transplant centers, the federal government’s rules for how they must do so are vague and often toothless. As a result, patients can get direction that’s uneven, depending on how much individual social workers and doctors decide to help. It is a scenario ripe for neglect and the introduction of bias.

JaMarcus hadn’t managed to get on the waitlist when COVID-19 rolled in, first as a distant news story, and then as a threat in the air he was breathing. It was killing Black adults his age at nine times the rate of white ones. People with diabetes made up 40% of the dead; patients on Medicare because of kidney failure were more likely to be hospitalized than anyone else on the government program. It seemed as if the virus was coming straight for JaMarcus, but he wasn’t able to isolate. Every other day, he still needed to trek to a dialysis clinic to spend hours tethered to a machine, surrounded by strangers.

Sometimes, a cough would pierce the quiet. Or an empty chair would prompt rumors that a patient was in the hospital, though no one would confirm whether it was COVID-19. JaMarcus didn’t like to worry Gail. He was more open with his older brother DeArthur, his closest confidant. “I can’t get this shit,” JaMarcus told him. “I really can’t afford to get this.”

JaMarcus was born at 10 pounds, and by 6 months old, he looked to his sister Shirley as if he were doubling in size. Their parents raised seven kids on a single wage; a back injury had left their dad unemployed, and their mom made $3.35 an hour dipping toy parts in paint. Their family had been in Bibb, a rural county halfway between Birmingham and Tuscaloosa, since at least the 1830s, and JaMarcus grew up in a segregated neighborhood, across the train tracks from the town’s white residents. The kids believed that their mom, Mildred, was first diagnosed with diabetes while she was pregnant with JaMarcus.

Their friends and relatives didn’t talk much about the condition, and Mildred didn’t know how it gradually damaged a body, or how diet played a role. They ate greens and beans and sweet potatoes, meat, biscuits, and always syrup. Mildred only saw doctors in emergencies; she didn’t have insurance, and only two local physicians touched Black patients. When her husband was later diagnosed, she joked that she had given it to him, as if it were a cold. You don’t reckon Markie gonna catch it from me too, do you? she would say about JaMarcus. She didn’t know it then, but because she had diabetes, he was more likely to develop it.

Evidence of high diabetes rates among Black Americans had been mounting long before JaMarcus’ birth, but it had largely been ignored. For the first half of the 20th century, diabetes was considered a disease of well-to-do whiteness. And at one point, it was so firmly associated with Jews that it came to be known as the Judenkrankheit, “the Jewish disease,” which was believed to be caused by extreme nervousness, intellectual exertion, or centuries of distress from oppression. After the civil rights movement, when doctors began paying closer attention to the disease in Black neighborhoods, the public was shocked by the high numbers. Years later, in 1985, the government released the first comprehensive report on the health of racial minorities, and it found that Black Americans were 33% more likely to have diabetes than their white neighbors. “People were shocked again,” Arleen Marcia Tuchman, a historian of medicine at Vanderbilt University, told me. But no government funding was set aside to address it.

In her recent book, “Diabetes: A History of Race and Disease,” Tuchman writes that as researchers documented the high rates, what emerged was “a caricature of poor and medically indigent black diabetes patients as lacking intelligence, unable to understand anything but the simplest instructions.” After diabetes was split into two types, people with the autoimmune condition of Type 1, who were predominantly white, were perceived as upstanding citizens who religiously monitored their sugar, Tuchman writes, while those with Type 2 were seen as responsible for their disease. In the past decade, a new wave of social scientists and medical researchers have begun recasting Type 2 as a condition of poverty and discrimination, triggered by factors beyond genes and personal behavior: childhood stress, availability of fresh food, distance from doctors, money. Today, Black adults are nearly twice as likely to develop the condition as white adults. As income levels fall, the rate of diabetes rises. Alabama, JaMarcus’ home state, is among the poorest in the country. It also has the highest rate of diabetes.

JaMarcus’ siblings had commanding personalities, but he was different. “You could hurt his feelings just by looking at him mean,” DeArthur told me. JaMarcus had a stutter, and they mocked him with tongue twisters. They urged him to wrestle and play football at school, but JaMarcus favored housework — cooking and cleaning and washing clothes alongside his mom, in their wooden home across from the Baptist church. By the time he started high school, JaMarcus weighed 405 pounds and was the largest kid in his class. A boy named Jamuel Breeze was the smallest. They figured if they were both being bullied, they might as well link up.

In ninth grade, JaMarcus was playing on the defensive line in a Bibb County High School football game, crouching in his purple jersey and gold helmet, when he collapsed. Unable to stand, he was carried off the field. His coach kept repeating that he was overheated, but when his mother drove him to the emergency room, he was diagnosed with Type 2 diabetes. “It was shocking to everybody in our circle,” Jamuel told me. “We were all eating the same shit.”

The doctors scared JaMarcus when they talked about his prognosis. One Saturday night, while watching “The Golden Girls,” JaMarcus told Jamuel that he worried he might not survive until prom. He began injecting himself with insulin. He started swapping in celery and apples for junk food, salads slathered in ranch for lunch, flavored water for soda. In the afternoons, he walked the slow roads by Hospital Drive for hours. He lost more than 100 pounds but couldn’t shake his diagnosis.

Jamarcus coped by pushing himself at school. He got on the advanced track for science and math and joined extracurricular groups: Science Club, Key Club, Future Business Leaders of America. He starred in step routines with the Kappa League in the school gymnasium; he was so light on his feet that the crowd would go wild. Almost every day, he approached his only Black teacher, Earnie Cutts, to talk about college or a service project. What can we do for the old folk? he would repeat. Cutts told me: “He was always the spearhead in organizing, and he did it with a meticulousness that many students didn’t have.”

In 2002, JaMarcus moved to Montgomery to attend Auburn University on a scholarship, but he didn’t have insurance or enough cash for his medications. He had aged out of Medicaid at 18. Diabetes is manageable, but without regular healthcare, or money for nutritious food, a slow violence destroys the body. Too much sugar flows through the bloodstream, devastating vessels and attacking nearly every major organ. Nerves die and infections fester; it is the leading cause of blindness and amputations. One of the most debilitating complications is the wreckage of the kidneys, which filter waste from the blood to make urine.

DeArthur, who shared an apartment with him, began noticing that JaMarcus was losing his vision. When JaMarcus met Gail in his hometown in 2003, she joked that she could have found herself a healthier man at the nursing home. He was drawn to her wry sense of humor. By the time they had their son, Marcellus, JaMarcus was 23, and the nerves in his legs were so damaged that he often fell without warning. When he burned his fingertips lighting candles around the house, he felt nothing. Still, he kept up his coursework. In 2006, he got his bachelor’s degree in business administration, with a major in human resources management.

Back home, JaMarcus’ mom had taken a new job driving the dialysis van, ferrying patients to clinics, when she received her own diagnosis of kidney failure. JaMarcus knew that she’d need support; all of his siblings had left for bigger cities, and his dad, who suffered from chronic pain, spent weeks at a time in bed. In 2008, he and Gail decided to move back to Centreville from Montgomery. DeArthur asked him not to; he knew JaMarcus wouldn’t find a good career there. But JaMarcus was adamant: as a kid, he’d promised to care for his parents when they got sick, in the same way they had cared for him. He transferred to a job in Tuscaloosa, as a teller at Compass Bank, with health insurance he could sometimes afford. He didn’t always have the money to pay the premiums. They settled into a three-bedroom apartment across the road from his former high school.

Five years later, JaMarcus’ body began to swell. It started in his feet, then his ankles, all the way up his legs and into his stomach. He was carrying so much liquid that he could hardly walk, as if he was experiencing a flood inside him. Without insurance, he hesitated to see a doctor. In June 2013, he was struggling to breathe when he walked a few steps; it didn’t help to lie down. He took himself to the emergency room at the University of Alabama hospital in Birmingham, and at the age of 30, he was told that his kidneys were about to fail. They were no longer removing excess water from his body. Soon, he would need to start dialysis.

Inequity in kidney care has haunted the field for decades. In 1961, as dialysis machines were entering medicine, the Seattle Artificial Kidney Center established a panel of citizens to decide who should have access to the expensive, life-sustaining treatment. After physicians set medical guidelines, they turned over the decision to the seven members: a housewife, a lawyer, a minister, a surgeon, a state official, a labor leader and a banker. Their task was to determine who was worthy; they based their decisions on patients’ finances, their family size, their education, how often they attended church. Most who made it were white middle-class men. The citizen group was soon dubbed The God Committee. Several years after it was exposed in a Life magazine article, Congress took the landmark step to cover all dialysis patients with Medicare.

At the time, in 1972, only 11,000 people were receiving dialysis, and Congress estimated the number would triple over a decade. But lawmakers didn’t foresee the surge in diabetes — the leading cause of kidney failure — and the numbers began to balloon. “There was this seeming explosion of Black kidney failure that was ‘discovered,’” Richard Mizelle, an associate professor of history at the University of Houston told me, “but the truth of the matter is that many African Americans had long been suffering from chronic and deadly kidney disease.” Today, the United States has one of the highest rates of kidney failure in the world, and about a third of all dialysis patients are Black. Though access to dialysis was radically expanded, the inequity has been pushed to the final, life-saving treatment: transplantation. Donated kidneys are a precious, limited resource, and once again, Black Americans are at a disadvantage.

JaMarcus was an inquisitive patient; when Gail was pregnant, he grilled doctors on their years of experience and read aloud at night about the fetus developing skin and fingernails. For years, he had been asking doctors about his kidneys, concerned that he’d follow in his mother’s footsteps. It wasn’t until he went to the University of Alabama hospital in 2013 that he learned he even had kidney disease. But as he reviewed his old medical records, he looked into his creatinine — a waste product that indicates kidney function — and realized his doctors had seen that it was high. His primary care doctor hadn’t mentioned it. Nor had physicians at the local hospital. “Doctors knew my kidneys were in trouble,” Jamarcus said, “and they didn’t say anything.”

Because he was told so late, JaMarcus’ disease had already advanced, and he wasn’t able to stave off kidney failure. People who don’t see a specialist ahead of kidney failure miss out on drugs that can slow the progression of their disease; they have higher death rates and lower chances of getting a transplant. Black patients are 18% less likely to see a kidney specialist, called a nephrologist, more than a year before starting dialysis. “These race differences in referral for nephrology care have a huge impact on health,” Dr. Ebony Boulware, chief of general internal medicine at Duke University, told me. “The results are about seven times greater mortality.” Insurance coverage is a major driver, but not the only one, raising questions about the role of bias and other barriers in the system.

A race-adjusted equation was also at play in JaMarcus’ case. The formula calculates kidney function by looking at what’s called “estimated glomerular filtration rate,” or eGFR. Creatinine is plugged into the formula along with age, sex and race. Doctors must note whether their patient is “Black” or not. By design, the equation assigns healthier scores to those who are listed as Black, because at a population level, a few studies found that this was more precise. With little investigation into why this might be the case, it was just accepted. That inflated score can mean a longer wait for a kidney because eGFR must drop to a certain level before you can start accumulating time on the transplant waitlist. The best-case scenario is to get a new kidney before needing dialysis, to avoid weathering the side effects of the machines. But those transplants are given on a first-come, first-served basis, and Black patients are less likely to get one.

The researchers and physicians behind the original formula, developed in 1999, wrote that Black patients had higher creatinine levels because “on average, black persons have higher muscle mass than white persons.” The assertion that Black bodies are different from all other bodies keeps company with generations of racist ideas that have infiltrated medicine, some of which were used to rationalize slavery. Researchers who developed the equation acknowledge that race is an imperfect variable, but even though they have updated the formula, they continue to adjust for race. The vast majority of clinical laboratories in the United States use such formulas today.

Over the past several years, medical students have raised alarms about the practice, and recent articles in major medical journals have questioned it. “It doesn’t make any sense,” Dr. Nwamaka Eneanya, a nephrologist at the University of Pennsylvania, told me. “I don’t know why we would think that being Black means that your kidney function is different. I don’t know if you have mixed race in your history. How can I use just the word ‘Black,’ one word, to dictate your care?” A number of hospitals including Beth Israel Deaconess Medical Center in Boston and University of Washington Medicine in Seattle have recently changed their practices. Nephrologists, though, are split. Those who aren’t ready to abolish it argue that removing the variable will carry its own negative consequences — for example, patients can’t get certain medicines like metformin, the cornerstone of Type 2 diabetes management, if their eGFR is too low. Some would prefer to carefully, and slowly, replace the formula with something more precise, like a marker called cystatin c, another indicator of kidney function.

In June 2013, JaMarcus’ race-adjusted eGFR was 25 — too high for the transplant waitlist. He’d need to wait until it was down to 20 before he was eligible. Dr. Vanessa Grubbs, a Black nephrologist who is one of the most vocal opponents of the race correction, had a Black patient in a similar situation. He had an eGFR of 24, which would have been 20 if he were white. Because she didn’t trust the formula, and a cystatin c test wasn’t available, she asked him if he’d be open to trying a more onerous process that most doctors don’t ask for: He would have to collect his urine for a full day and store it in a refrigerator, so she could estimate his GFR with more precision. When she had that sample tested, his GFR was calculated as 20. She referred him for a transplant.

The best treatment for kidney failure is a transplant from a living donor, but JaMarcus couldn’t ask Gail to donate a kidney; she also had diabetes. Most of his siblings did as well. Black patients have far more trouble finding relatives who can donate, because of a higher rate of disqualifying medical conditions. The disparities in living donor transplants have nearly doubled since 1995: Today, white Americans are almost four times more likely to get one.

JaMarcus wasn’t the type to ask strangers for a kidney, either, but he could see that some patients had gone public with their needs. Along the roads in Alabama, bold-colored billboards read: VERNA NEEDS A KIDNEY. MELINDA NEEDS A KIDNEY. JASON NEEDS A KIDNEY. Below the names were photos of each patient — hooked up to a dialysis machine, or hugging their children — with a phone number and a question. “Could you be the miracle I’m praying for?”

In November 2013, JaMarcus started dialysis in Tuscaloosa, a 40-minute drive away, at the same DaVita center that his mom had attended, in a small brick building behind an auto repair shop. JaMarcus’ sister Shirley had asked him to try a different clinic; she hadn’t liked how the staff had treated their mom. But JaMarcus took comfort in the familiar. DaVita was a brand he knew, a Fortune 500 company with more than 2,600 centers, which seemed to be everywhere, across from McDonald’s and Taco Bell.

Dialysis is corporate healthcare on steroids: For-profit companies dominate the market, reap their revenues from Medicare and lobby hard against government reform. DaVita and Fresenius recently spent over $100 million to fight a ballot initiative in California that would have capped their profits, much of which are derived from taxpayer dollars, arguing that the initiative would lead to a shortage of doctors. They have lower staffing ratios and higher death rates than nonprofit facilities. And studies have found that patients at for-profit clinics are less likely to reach the transplant waiting list; they are 17% less likely to get a kidney from a deceased donor. Purnell, the Johns Hopkins epidemiologist, said the whole system is broken as long as corporate dialysis, which is financially incentivized to keep patients, is in charge of steering them to the better treatment of transplant: “Why would I walk into a Nissan dealership to tell me about a BMW?”

Dialysis facilities are responsible for transplant referrals, according to federal regulations, and JaMarcus’ DaVita social worker was assigned to educate and support him. When he was first assessed, a couple of weeks after he began, she wrote that he was suitable for referral and she would get him one when he got insurance. Jamarcus qualified for Medicare within three months. But more than a year later, he still hadn’t been referred.

By 2015, JaMarcus had a new DaVita social worker, Robbin Oswalt, who attributed the delay to a different prerequisite: “He is interested in getting a transplant referral if the Dr. approves after his wgt loss.” JaMarcus had lost 108 pounds since he started dialysis, and his body mass index had been hovering around the University of Alabama’s limit for months. At the time, he didn’t know that his height had been mistakenly entered into his DaVita records as 5-foot-11 — an inch and a half short of his actual height. Their incorrect number was then used to calculate his BMI, which made it look to his doctor that his weight was disqualifying, when it wasn’t.

JaMarcus didn’t like to step on people’s toes. He’d been raised in a family of rule-followers and thought that his social worker would make a referral when he was ready. Unlike many hospitals, the University of Alabama transplant center didn’t allow patients to refer themselves. His social worker needed to coordinate with the nephrologist, Dr. Garfield Ramdeen, who has an independent practice but is also contracted by DaVita as the medical director of the clinic. He rarely came to the center while JaMarcus was there — once a month, twice if JaMarcus was lucky. (DaVita said that someone from the physician’s office made rounds on a regular, often weekly, basis. Dr. Ramdeen did not reply to multiple requests to speak with me.) JaMarcus started to feel as if no one was paying attention. “And that’s what kept me off the list,” he told me.

Dr. Deidra Crews, a professor of medicine at Johns Hopkins (who is unrelated to JaMarcus), sees patients at Fresenius, DaVita’s main competitor, and says that delays in referral are common. “It’s not a system to move people into transplantation,” she told me. “Reminders would be helpful, protocolizing it so every month social workers are checking in on transplant.” (A Fresenius spokesperson wrote that it has “monthly progress reports” and is “piloting several new technologies’’ to streamline referrals and to better manage patients on the waitlist.) Even DaVita recognized that this was a gap when I asked about it. There are few systemwide rules, and each center has its own practices.

DaVita said that staying on the path to a transplant is a shared responsibility between the doctor, the patient, the transplant center, and the dialysis care team.“We want all patients – regardless of their age, race, health conditions or insurance status – to have access to transplantation, which we believe is the best treatment option for people with kidney failure.” The company wrote that the ultimate decision to pursue a transplant happens between a doctor and a patient. The Centers for Medicare and Medicaid Services note that referrals are a dialysis “facility-level responsibility.”

When JaMarcus’ nephrologist finally referred him to the University of Alabama transplant program, in early 2015, his weight had risen. He explained to Oswalt, his DaVita social worker, that he’d understood from staff at the transplant center that he was a bit too heavy. Oswalt noted this in his chart. She didn’t suggest that he try the center at Vanderbilt University, three hours away, which accepted patients at higher weights. It’s unclear if she even knew it. DaVita did not mandate her to supply that kind of help.

As the routine became more permanent, JaMarcus privately mourned the collapse of his career. At the bank, he’d been hoping for a promotion to loan officer, and recently, he’d been applying for jobs in human resources. But the only work he could find that tolerated his dialysis schedule was a part-time position as a cashier at Dollar Tree. JaMarcus cancelled cable. Instead, he bought bootleg DVDs and the family pretended their home was a theater, microwaving big bowls of popcorn and bragging about it to friends. When Gail’s teenage niece asked to move in, he started parenting her as if she were his daughter. He kept up appearances, still dressing them all in matching clothes: blue sneakers for the men in the family, identical purple button-downs, pink for everyone on special occasions. He committed himself at church, as the treasurer and resident decorator, singing with Gail in the choir.

Low on cash, JaMarcus moved his family from their tidy apartment to his childhood home, with rotting floors, no heat and holes in the windows. He borrowed $50 here and there from family to help cover the gas to get to DaVita, 30 miles away. When he tired of asking, Gail pawned three gold rings, gifts from her father and godmother. “I knew if I didn’t do anything, he wouldn’t be able to get to and from,” Gail told me.

JaMarcus put up a front as he lost control of his body, which was retrofitted to be plugged into the machines. He laughed if blood spontaneously rushed from the port in his neck. When doctors joined a vein and artery in his left forearm, creating a fistula to withstand the needlesticks, he joked about the sight of it, bulging and gnarled. “Feel this! Touch it!” he would say, running his fingers over the blood he felt thrilling beneath his skin. As a young boy, Marcellus mimicked his humor. He knew his father could no longer urinate, and he’d stand over the toilet to tease, “Look dad, I can pee!”

But as dialysis wore on JaMarcus’ body, Marcellus began to worry. At the age of 10, he Googled his dad’s condition. He read about how his father needed dialysis to live, but how it might damage his heart and how he could die. He didn’t want to pry, so he watched most mornings as JaMarcus vomited up the fluid that his body could no longer handle. In silence, they’d get in the car and drive to school.

When JaMarcus began seeing a nutritionist, in 2019, he said that he wanted a transplant because of Marcellus, whom he called his “mini-me.” His son was approaching the same age he was when he was first diagnosed with diabetes. JaMarcus told the nutritionist that he worried Marcellus was “headed down the same road.” Each month, JaMarcus used his glucometer to check his son’s sugar levels. He taught Marcellus to watch his weight and brought him along to walk the track.

JaMarcus no longer needed a doctor’s endorsement to get a referral for a transplant; a year earlier, DaVita had changed its rules to allow patients to ask for a referral when they wanted one, regardless of whether their physician thought they were a good candidate. The company made the decision in order to remove the influence of implicit bias. JaMarcus had been waiting until he could bring his BMI of 36 down to 35, which is what he’d been told he needed to hit in order to qualify. But the University of Alabama transplant program had raised its body mass index limit to 40 back in 2015. The hospital didn’t publicize its new standards on its website, and no one at DaVita had told him. For years, he’d been eligible.

When I mentioned my confusion about this to DaVita, a spokesperson replied that their social workers aren’t transplant coordinators but transplant advocates. When I asked why they didn’t provide basic facts on the requirements at nearby hospitals, DaVita replied in an email that the responsibility to update patients on criteria falls to transplant centers. Years ago, DaVita tried to argue against federal regulations that require dialysis care teams to assess patients based on the criteria at the prospective transplant center, claiming that this was “beyond the reasonable scope of practice” for most of its staff. The Centers for Medicare and Medicaid Services, though, explains in its guidelines that “if the dialysis facility refers patients to multiple transplant centers, the dialysis facility should have the selection criteria for each center on file and available to patients.”

Over time, the setbacks eroded JaMarcus’ optimism. He’d tried pursuing a master’s in education through the University of Phoenix, but he couldn’t afford the tuition. He would watch what he ate and take long walks, only to fall behind on his medication and binge on sleeves of fun-size chocolate bars. Sometimes, he’d call DeArthur just to vent: I don’t understand. What did I do? What did I not do? JaMarcus had always been slow to anger, but DeArthur noticed he was developing a temper. Occasionally, he cussed DeArthur out, hung up, and called back to apologize.

This March, JaMarcus got the news he’d long been waiting for: he was being referred to the University of Alabama transplant center. Under normal circumstances, staff at the center would have contacted him within two days. He would have had an appointment at the clinic in Birmingham within a month, and spent the following weeks getting tests with his doctors: an echocardiogram, a stress test, a CT scan. He expected that he would then be approved for the waitlist. If he could get on it, his time would be backdated to when he started dialysis in 2013, and he’d be near the top of the list. Chances were good that he could get a transplant within a year.

Like everyone this spring, his plans were interrupted by the coronavirus. First, Marcellus’ middle school shut down in the middle of March. JaMarcus and Gail drove to Sam’s Club to stock up on toilet paper and sanitizer and water. Then, Gov. Kay Ivey issued a statement on the state’s first confirmed case. “Alabamians should not be fearful,” she said. “Alabamians are smart and savvy, and I know they will continue taking appropriate precautions.” Two weeks later, word started to get around about the first person in town who’d contracted the virus. At 58 years old, he’d been placed on life support.

JaMarcus recognized that his immune system, weakened by diabetes and kidney disease, was no good at protecting him. So he took a leave from his new job, on the check-out line at Target, retiring his red shirt. Since Gail couldn’t drive, JaMarcus masked up to buy groceries. Each time he arrived back home, he left the plastic bags on the porch, threw his clothes in the washer and soaped himself down in the shower. Gail trailed him through the house with Microban, spraying the knobs and light switches.

Every once in a while, strange symptoms set in, and he wondered if the virus had caught him. In April, just before his 37th birthday, his ears started ringing and aching, and he ran a low fever. The local hospital denied him a COVID-19 test but told him to self-quarantine. He moved into Marcellus’ bedroom, where his son would leave him ramen at the door. When he called his dialysis clinic, staff said to come in to his normal shift with a mask, like everyone else. (DaVita told me that, for the most part, they treat patients with suspected COVID-19 in different facilities or on different shifts from the general population.) In May, the earache came back stronger, this time with a cough. He got a COVID-19 test and it came back negative.

That month, JaMarcus decided to put his goal of a transplant before his worries about the coronavirus. He switched from morning dialysis to night sessions, because he wanted a full-time day job with insurance. Anyone on Medicare because of kidney failure loses that coverage three years after a transplant, so patients need private insurance for the lifelong medicines that follow the surgery. (The U.S. House of Representatives passed a bill last week to cover these immunosuppressive drugs; the Senate is expected to vote on it soon.) Night dialysis meant attending a new clinic, which held seven-hour sessions in the evenings. Gail hated the routine and its risks, but she slowly acclimated. When JaMarcus got home around 2 a.m., before he lay down to sleep, he would reach by their wrought-iron bedpost and gently squeeze her toes.

On a warm night a few weeks into JaMarcus’ new regimen, a man known as Big Eric started shivering in his chair. While JaMarcus and the others remained hooked to their machines, an ambulance arrived and rushed Eric to the hospital, where he tested positive for COVID-19. JaMarcus knew several people in town who’d been admitted with the virus and had made it out alive. Then he learned that Eric was dead.

Black Americans were dying of COVID-19 at nearly three times the rate of white Americans. For anyone familiar with the disparities that have long plagued health care, this was not surprising. But once again, headlines heralded the “shocking” and “alarming” figures. Jobs, housing and testing all played their parts, but it was impossible to ignore how conditions like kidney failure, and its leading causes of diabetes and hypertension, were already distributed across the country, making certain Americans particularly vulnerable. Far too many of these patients had already been left behind by a health system never set up to care for them.

Despite all of the research on racial disparities in transplants, the government has been slow to implement reforms. The Centers for Medicare and Medicaid Services requires dialysis centers to “inform” their patients about transplant options, but it hasn’t standardized exactly what they need to communicate. One study out of Georgia found that the transplant referral rates in the first year of dialysis ranged from 0% to 75% among clinics, and the variability could not be attributed to measured differences among patients. The government hasn’t tracked or publicized referral rates at different centers, or set up penalties for those on the low end.

Last year, President Donald Trump signed an executive order to improve kidney care, in which he proposed changing Medicare payments to incentivize more transplants. The order did not include measures to ensure that patients were equitably referred, evaluated and waitlisted for transplant. Many kidney researchers were left wondering when the federal government would prioritize equal access. This summer, physicians and advocates took one step to address fairness in clinical formulas. The National Kidney Foundation and the American Society of Nephrology formed a task force to assess the race-correction equations. They wrote that “race is a social, not a biological construct,” and that they “are committed to ensuring that racial bias does not affect the diagnosis and subsequent treatment of kidney diseases.” They expect to announce an update later this month.

When I spoke with JaMarcus in early June, I could hear the frustration in his voice. “If I were on the donor list, I would have received a kidney by now,” he told me. He was livid that the process had been this difficult to navigate, and he was worried about his friends in dialysis, many of whom didn’t have a high school education. He had a degree in business — he had nearly completed a Master’s, he repeated — and still, it seemed as if his doctors, his social worker, his clinic, the entire system, was working against him.

It wasn’t until July that things started looking up. In his night clinic, JaMarcus had a new social worker, Candice Morrow, who was helping him apply for financial aid to cover gas money, and his care team was following up on his referral. Morrow left him handwritten notes about her progress. “Just didn’t want you to think I forgot about you,” she signed off. The surgical director of the kidney transplant program at the University of Alabama told me that the first record they have of a referral this year was not in March, but on July 9. “Not all good candidates get to the transplant center,” Dr. Michael Hanaway said. “This is an inefficient system that does not serve patients well. Many, many patients get left behind.”

To Hanaway, JaMarcus looked like a good candidate: young, otherwise healthy, with a fine BMI. He had made it down to 258 pounds that summer, earning him the nickname Slim Shady. It seemed like everything he had done over the past several years had primed him to get on the list. After he got an angiogram, he even learned that he didn’t have coronary artery disease. “I got a heart like a teenager!” he gloated to Gail, when he got home from the cardiologist. “Baby, I can do it all.”

When his ears began ringing again in July, JaMarcus didn’t think much of it. There was a whistle in his breath, and he’d lost his appetite, but it seemed like a simple cold. On July 14, he called in sick to dialysis. But two days later, when he stood up to drive to his next session, it felt to him as if the room was spinning. When he made it to the front door, he announced that everything looked blurry. Confused, Gail called DeArthur, who drove up from Montgomery and took his brother to the hospital.

With too little oxygen in his blood, JaMarcus was admitted to the intensive care unit at DCH Regional Medical Center, where he lay facing a shaded window and a wall-mounted clock. He alternated between an oxygen tube and a BiPAP, a kind of air mask, to breathe. After his lab work and chest X-ray came back, he was diagnosed with sepsis, respiratory failure and pneumonia. Then his test came back positive for COVID-19.

When his relatives texted him, JaMarcus shot back casually. “Thanks for checking on me,” he wrote to his nephew, “I’m doing fine just got to get better tho.” Marcellus texted: “Mommy don’t want to talk…. are u ok… u want to call me and talk or what.” JaMarcus replied: “Doing well son.” His younger brother teased, “How ya feeling boi? You gotta give me at least 10 to 15 more years before you can kick tha bucket…” JaMarcus wrote: “I’m trying not too.”

Gail spoke with him every night, until 1 or 2 in the morning. She sang gospel songs in her strong alto, and she prayed aloud. JaMarcus had always thought that her prayers reached God quicker than his. And he didn’t want to let his body drift from consciousness. “He would never want to hang up,” Gail told me. “He just wanted me to be on the phone.”

On July 29, the doctors started talking about putting JaMarcus on a ventilator. Gail asked him, “Is there anybody else that you want to talk to before they put you on the machine?”

JaMarcus said: “I’m talking to her now.”

Gail didn’t dare say it, but she couldn’t stop thinking about a text she’d received from him earlier. All he had written was: “I’m so scared.”

On Aug. 8, dozens of young families in masks gathered in the yard of Present Truth Church, facing a powder blue casket with silver hasps. There, JaMarcus lay with his arms by his sides, in a white suit and baby blue tie. Under a hot sun, several women in face shields and gloves sang worship songs as Marcellus fanned his mother with a funeral program. After the poetry and the prayers, a caravan of cars drove past JaMarcus’ childhood home, his elementary school, the church where he was married, to a cemetery, tucked into a forest, where his parents were buried.

JaMarcus died on July 31 at 7:29 a.m. The hospital had allowed Marcellus and Gail to say goodbye, and in the fluorescent light, they had stood beside his bed. Marcellus wrapped his hand around his father’s finger, which was warm. JaMarcus coded once, then twice, and he was gone.

At first, Marcellus didn’t know how to feel. He told me that it was like genjutsu, a concept he’d learned from a Japanese anime series, in which a victim’s senses have been disrupted, and he moves through an illusion of a world that is not real. Hours after JaMarcus died, Marcellus texted his dad: “Wassup.” When he realized that his father wasn’t coming back, he wrote to him for guidance: “If u can some way can u replied back to me to see are u ok please dad.”

In the weeks after, Gail rarely moved from her bed. She cried, she played Wheel of Fortune on her phone, she put herself to sleep with melatonin. She punished herself daily by scrolling to a photo she’d taken of JaMarcus in his coffin. Sometimes, Gail got angry about all he had been through at dialysis. At other times, she was grateful that he didn’t have to suffer it any longer.

When I brought details of JaMarcus’ care to DaVita, they told me that there was no record of him or his family filing a complaint or sharing negative feedback. “The transplant system is complex, and it’s difficult to hear about experiences like JaMarcus’, who didn’t make it onto the transplant center’s waitlist even after his physician referred him several times. JaMarcus was a beloved patient we supported for many years. Our hearts are with his loved ones, and our care team is grieving his loss. Alongside the entire kidney care community, we will continue to advocate for transplant and actively push for progress to the system.”

I visited Gail and Marcellus in September, and most days, we sat in their dark living room. Gail curled into her favorite recliner, surrounded by reminders. Fake white roses that JaMarcus had coiled into a bouquet. Framed photos of Gail, with the note, You’re still the one. She hadn’t let Marcellus return to school, and she was still scared to go outside.

One Friday night, Gail was trying to get some clarity on all the bills, which kept arriving in her mailbox. JaMarcus, like all dialysis patients, didn’t qualify for a traditional life insurance policy, and Gail didn’t have a job. She was sorting through the mail as we talked. Amid the junk sat a University of Alabama Medicine envelope. She picked it up and read it silently: “The UAB Transplant office has received a referral for transplant evaluation from your local nephrologist,” it began. The transplant center was writing to schedule an appointment.

Gail leaned her cheek on the headrest. “Lord have mercy,” she said. Tears dripped out of the corners of her eyes. She let her mind imagine JaMarcus celebrating: “Gail, Gail! Can you believe it?” She pictured him shouting. “I’m getting a transplant.”

Lizzie Presser covers health, inequality and how policy is experienced at ProPublica.

Design and production by Jillian Kumagai, Lisa Larson-Walker and Agnes Chang.

Ribbon illustrations by Lisa Larson-Walker.

We reported how Memphis’ largest hospital system sued thousands of poor patients. Now, new data shared with Sen. Chuck Grassley shows the system collected $169 million in past-due bills, but only 1% received financial assistance during collections.

This article was published on Friday, December 4, 2020 in ProPublica.

By Wendi C. Thomas, MLK50: Justice Through Journalism

Memphis’ largest health care system almost never gave patients discounts based on their income even as it pursued thousands for overdue bills in the last several years, according to new information released this week.

What it's like to stay alive as the virus charts its fatal course through a home for the elderly in one of the worst-hit neighborhoods in the Bronx.

This article, published on Monday, November 30, 2020, is a collaboration between The New Republic and ProPublica.

By Ava Kofman

When someone in the building died, a notice was often taped to a window in the lobby: "WE REGRET TO ANNOUNCE THE PASSING OF OUR FRIEND…." The signs did not say how or where the friend had died, and because they were eventually removed, they could be easy to miss. In March, as these names began to appear more frequently at Bronxwood, an assisted living facility in New York, Varahn Chamblee tried to keep track. Varahn, who had lived at Bronxwood for almost a year, was president of its resident council. Her neighbors admired her poise and quiet confidence. She spoke regularly with management, but as the coronavirus swept through the five-story building, they told her as little about its progress as they told anyone else.

Some residents estimated that 25 people had died — that was the number Varahn had heard — but others thought the toll had to be higher. There was talk that a man on the second floor had been the first to go, followed by a beloved housekeeper. An administrator known as Mr. Stern called in sick. Around the same time, Varahn noticed that the woman who fed the pigeons had also disappeared.

The New York State Department of Health advises adult care facilities to inform residents about confirmed and suspected COVID-19 cases. But inhabitants of Bronxwood said they were kept in the dark. In the absence of official communication, it was difficult to sort out hearsay from fact. "I was told that it was 42 people," said Renee Johnson, who lived on the floor above Varahn. "But honestly we don't know. They are not telling us anything." When for a couple of weeks Renee herself was bedridden — fatigued and wheezing — there were rumors that she, too, had passed away.

Because so many people were missing, and no one knew where they'd gone, life began to feel like a horror film. The dining room, once an outlet for gossip and intrigue, was shuttered and the theater room padlocked. Staff covered the lobby in tape, as if it were the scene of a crime. The library began filling up with the possessions of those who had vanished: their televisions and computers, their walkers and bags of clothes.

It seemed like a good omen when a few residents came back from the hospital grinning, having faced the ordeal and lived to tell about it. "I wouldn't even say to them, 'I thought you were dead,'" Varahn said. "I was just happy to see them." But then she spotted these survivors in the lobby or going out shopping and worried that the sickness would continue to spread.

The virus was taking the worst toll in the Bronx, and Bronxwood sat within the borough's hardest-hit ZIP code, although it would be weeks until anyone would know this. But by April, it was clear that elderly Black and brown people with preexisting health conditions, living in crowded housing in the city's poorest neighborhoods, were among those most susceptible. That many of Bronxwood's residents belonged to this demographic did not escape anyone there.

When Varahn arrived at Bronxwood in the summer of 2019, she was 65 and still worked at two salons. She hadn't been planning to move to an assisted living facility, but she was desperate to find an affordable room. She had been sharing a ground-floor apartment with her 28-year-old son in Allerton, a working-class neighborhood in the Bronx, before her landlady pushed her out to make space for her grandchildren. Friends told Varahn she should have taken the matter to court, and maybe she could have, but she believed that things happened for a reason.

In the brick vastness of the east Bronx, with its towering apartment blocks and modest duplexes, Bronxwood's cream-and-beige exterior stood out. The building was just a 20-minute walk up the street from her old apartment, so she didn't have to worry about missing her clients, her church sisters or the kids she mentored, who called her Mother V. Her benefits covered the $1,270 rent, which included three meals a day and housekeeping. The shared bedrooms — crammed with two twin beds, two stout night tables, two wardrobes and two wooden dressers — were small, but Varahn didn't think she'd spend much time in hers.

On the first floor, which housed the recreation and meeting rooms, there was always something to do. Staff threw holiday parties and monthly birthday celebrations. Visitors came by to help with knitting and coloring and computer lessons. There was Uno, Pokeno and afternoon bingo. On Wednesdays, members of the cooking club prepared Cornish hens, fish and chips, liver with onions. In the afternoon, bands would perform — classical and jazz, calypso and merengue — and some of the singers were quite talented.

Not long after Varahn moved in, she met Glenda King at a Bible study group. Glenda, who is 68 and has lived at Bronxwood for over seven years, wears square transition lenses and tucks her gray hair into a prim, low bun. Dryly self-deprecating, she considers herself an introvert who has the misfortune to live in a building with 270 other people. She makes a point of being friendly, even though she likes to say that she has no true friends.

At first, Glenda found Varahn to be reserved, but she soon realized that what she had mistaken for detachment was simply Varahn's way of taking in her new surroundings. Varahn knew how to draw people out and listen to their problems. She had worked as a beautician since high school, first at flagship boutiques in the city and later for the disco diva Carol Douglas and on the sets of Spike Lee films. Her clients felt comfortable confiding in her, and before long, so did the residents of Bronxwood. "I can go up and talk to her about anything," Glenda told me. "Her forte is humility."

All adult care facilities are legally required to maintain a forum where residents can independently discuss their living conditions, but some resident councils, like Bronxwood's, are more active than others. Although Varahn was new to the building, people encouraged her to run for president. She would bring an unusual amount of political experience to the council: She had previously served as vice chair of the Allerton Barnes Block Association and as president of both the neighborhood merchant's group and a charity society at her church. Under her bed, she stored the plaques from various luncheons that had celebrated her civic advocacy.

After Varahn's victory in the September elections, Glenda, who had worked for many years as a typist, took on the duties of council secretary, and Hurshel Godfrey, another longtime resident, assumed the vice presidency. Every month, the council gathered in the main lobby, which fit about 60 people, some of them perched on their walkers. Varahn, who has a broad, serious face and a sleek bob, dressed for the occasion in crisp two-piece suits with lapels. She worked to cultivate a shared sense of purpose. "I never said I could do something, even if that was true," she said. "I always emphasized that we could do it together."

One of the first things Varahn noticed that fall, as the weather grew colder, was how few residents had proper winter clothes. Some explained that they were stuck indoors because they lacked coats. Old men shuffled around in flip-flops in the rain. In the annual grant application for extra state funding, Varahn secured a bigger clothing allowance — $200 per resident — and a double-oven stove for the communal kitchen. She brought in educational speakers for Veterans Day and Black History Month, and planned field trips to go out dancing and to the casino. "Varahn had a lot of connections," Hurshel said. "I knew a few people, but she knew a lot."

Some of the local politicians Varahn was acquainted with started asking her if she had ever considered running for higher office: The City Council elections were coming up in 2021. In February, she started riding the subway to midtown Manhattan to take a class for first-time candidates. Former campaign managers shared tips on electoral strategy and the best kind of eye contact to make with large crowds. Maybe, she thought, electoral politics was her calling.

At this point, the virus was said to be on the other side of the world. It hadn't yet surfaced in a nursing home in Kirkland, Washington, or in New Rochelle, just a short drive up the road.

Until the 1980s, elderly Americans with medical needs had limited options: They could age at home with family or aides, or they could "park and die," as the saying went, at a nursing home. Assisted living facilities emerged as a third way, rejecting the clinical strictures of a medical institution in favor of a more informal, dormlike setting.

In the last four decades, demand for assisted living has soared. The paradigm promises residents the freedom to live autonomously — and operators freedom from regulation. Unlike nursing homes, assisted living facilities are not subject to federal oversight. The standards for care — along with the definition of "assisted living" — vary greatly from state to state (and from facility to facility).

During the pandemic, these freedoms have become liabilities. "If infection control was limited and regulation was already ineffective in nursing homes, it's almost nonexistent in assisted living," said David Grabowski, a professor of healthcare policy at Harvard Medical School who studies long-term care for older adults. "It's all the problems we are talking about with nursing homes, but even more so. There's less regulation, far less staffing and many of the residents are just as sick." The population in assisted living often closely resembles that of nursing homes, yet there are no requirements that the former provide full-time medical staff. In New York, according to government data, half of those in assisted living are over 85, two-thirds need help bathing and a third have Alzheimer's or some other form of dementia.

At Bronxwood, the state's third-largest adult care facility, residents said that employees initially lacked protective gear as they cleaned dozens of rooms. As in other homes in the city at the start of the outbreak, shared bathrooms and group meals made it difficult to isolate. And because it is not a medical institution, residents continued to enter and leave the building as they'd always done. (Neither Bronxwood nor Daniel Stern, an administrator, responded to repeated requests for comment.)

Less than 1% of Americans reside in long-term care facilities — a category that includes nursing homes and assisted living residences — but these facilities account for around 40% of the country's COVID-19 deaths. Researchers caution that this figure represents an undercount. Many states do not publish this data, or do so incompletely, and fewer than half of all states report cases in assisted living facilities, according to research by the Kaiser Family Foundation. "As a result," the analysis said, "it is difficult to know the extent to which residents and staff at assisted living facilities have been affected by COVID-19 or the extent to which interventions are urgently needed."

The way that New York counts deaths has been controversial from the start. That's because the state's Health Department will not attribute a death to a residential healthcare facility unless the death occurs on the premises. The unusual policy has baffled residents and their family members, along with lawmakers and healthcare experts. "This is a really big hole in New York state data," Grabowski said. "If someone lives for a long time in a nursing home, it makes no sense that their death is then attributed to the hospital rather than the nursing home." Without a proper count of cases and deaths, advocates argue, officials cannot direct scrutiny or resources to afflicted homes.

For more than two hours at a hearing in August, legislators repeatedly pressed the state health commissioner, Dr. Howard Zucker, for the number of deaths that could be traced back to residential healthcare facilities. His answers did not satisfy his interrogators. "It seems, sir, that in this case you are choosing to define it differently so you can look better," said Gustavo Rivera, the state Senate Health Committee chairman, whose district includes part of the Bronx. "And that's a problem."

Gov. Andrew Cuomo has boasted about the relatively low death toll in the state's nursing homes, despite the fact that no other state counts these deaths as New York does. As of mid-November, there have been more than 6,619 virus-related deaths within the state's nursing homes and 179 in its adult care facilities, according to official data. Bronxwood, however, has never appeared in that tally.

"The public list is incomplete and misleading," said Geoff Lieberman, the executive director of the Coalition of Institutionalized Aged and Disabled, an organization that advocates on behalf of adult home residents in New York City. "Either everyone at Bronxwood died at the hospital, or the information isn't being accurately reported." Before the August hearing, Lieberman and his colleagues at CIAD interviewed residents at 28 adult homes in New York City, including Bronxwood, and tallied around 250 deaths from their accounts — a stark contrast to the 53 deaths that facilities had self-reported to the state. Bronxwood employees likewise sounded the alarm: In April, six staff members told local news that by their count more than a dozen residents had died.

Residents played detective, too. In May, when the U.S. death toll hit 100,000, Renee Johnson tried to match the names she saw in the newspaper to those of her missing neighbors. "We lost a lot of friends," she said. "And you're scared — you're really scared — because you don't know if you're next."

Jonah Bruno, a spokesman for the Department of Health, defended New York's approach to counting COVID-19 deaths in residential healthcare settings. "The Department goes to great lengths to ensure the accuracy and consistency in our data reporting," he wrote in an email. Bruno did not disclose how many residents died in the hospital after falling ill at Bronxwood, but he noted that the facility passed an infection control survey in May. "Since the start of this pandemic," he added, "we have made protecting the most vulnerable New Yorkers, including those in adult care facilities, our top priority."

Slowly and then all at once, everything that had made Bronxwood bearable was taken away. Residents were discouraged from seeing one another, going outside or congregating in common areas. Visitors were banned. Whenever people lingered downstairs or smoked out on the patio, staff ushered them back to their rooms.

Varahn hung posters in the lobby to try to boost morale. The first gave the administration and staff five hand-drawn stars and thanked them "for caring during COVID-19." "WE ARE ALL IN THIS TOGETHER," read the second, on which she had colored an American flag. Some residents thought their president was doing the best she could, given the circumstances. Others were offended. They didn't want to thank anyone: They were miserable.

Deborah Berger, who lives on the fourth floor, likened the new regime to living in a giant day care center. Glenda said she felt like a puppy in a doghouse. Renee compared it to jail.

The analogies were ready at hand, but what was harder to express was how little trust they had in the institution tasked with protecting them. "Nobody is talking to us," Renee said. "The staff just say: 'Go to your room. Go to your room.' There's no feelings. There's no nothing."

Glenda washed her hands until she felt as if they were going to fall off. She wiped everything down with bleach — door handles, dresser, windowsill. She had a weak left lung, and she was terrified. "If I get one hit of that coronavirus," she liked to say, "I'm not going to make it." When her legs got stiff from sitting, she paced up and down her cappuccino-colored hallway, about the length of a city block. Other times, wearing a surgical mask, she wheeled her walker downstairs, though the state of affairs there could be disappointing. A lot of residents didn't wear masks. They huddled around the TV and crowded in the elevator. People were getting complacent. "Not me," Glenda said.

The council had suspended its meetings, but toward the end of April, several residents approached Varahn to report that Bronxwood was not giving them their stimulus checks. In fact, complaints about missing or partial stimulus checks were so widespread throughout the city's facilities that the state issued a guidance: Residents' money belonged to residents. Varahn convened an impromptu meeting with the council's leadership in the stairwell — the only somewhat quiet place in the building — to strategize about what to do.

Hurshel, the vice president, was planning to ask about his check. "Don't ask," Varahn coached him. "Say, 'I came here to get my money and I'll cash it myself.'" Glenda noted that people with dementia might not remember the existence of the checks in the first place, so she knocked on doors to remind them.

Part of Varahn's role as president was to relay these and other concerns to Mr. Stern. They had an easy, playful rapport. Sometimes, he asked what an intelligent woman like her was doing living in a place like this. The question flattered her, but it also unsettled her, as if she wasn't wanted or didn't belong.

People talked about leaving Bronxwood almost as soon as they arrived, but the truth was that they were there because they had nowhere else to go. The elderly are typically steered to places like Bronxwood after a stay in the hospital. They have taken a fall or needed a surgery, and while they're recovering, lose their apartment. Others, like Glenda, are recommended by a caseworker at a shelter. It's not uncommon for such homes to hire recruiters to help fill their beds.

While many assisted living facilities cater to a wealthy clientele, who pay out of pocket, Bronxwood primarily serves low-income seniors. (It is, technically speaking, an adult home with an assisted living program.) Most residents sign over their supplemental security income to pay for the room and board — and out of that sum the facility gives them a $207 "personal needs allowance" each month. The money runs out quickly, since it often goes toward phone bills, toiletries, transportation and more nutritious food.

Out of Bronxwood's 270 or so residents, more than half are enrolled in its assisted living program, whose costs are covered by Medicaid. In theory, the program offers an extra level of care to those who need it. In practice, it functions as a "huge financial boon" to the adult home industry, said Tanya Kessler, a senior staff attorney with Mobilization for Justice, a legal services organization. Bronxwood can charge Medicaid between $78 and $154 per enrolled resident each day, depending on his or her needs. But Kessler said there's little oversight into whether this additional funding results in additional care. Bruno, the spokesman, said that the Health Department conducts regular inspections of assisted living programs "to ensure all applicable laws, regulations and guidelines are being followed."

Healthier residents at Bronxwood told me that they seemed to be roomed with those who were more infirm, effectively placing them in the role of an extra aide. "One of the big complaints we hear is, 'I'm not well myself, but they put this person in here that they expect me to look after,'" said Sherletta McCaskill, who, as the training director of CIAD, helps adult home residents organize councils and independent living classes. "It speaks to the lack of services that these homes are providing." The most recent audit by New York's Office of the Medicaid Inspector General found that Bronxwood had overbilled Medicaid by $4.4 million in 2006 and 2007. (Bronxwood requested an administrative hearing to challenge the findings, according to an OMIG spokesperson; the date is pending.)

In the pandemic, everyone's escape plans, loudly discussed yet endlessly deferred, took on a new urgency. Residents told Varahn that they were joining the city's long wait list for subsidized senior housing, or that a son or daughter was coming to rescue them. Faye Washington, who was 68 and lived down the hall from Glenda, tried to compile a list of senior housing options in the Bronx. "You know why I want to get out?" Faye said. "Because when all those people passed away, it killed me."

Faye told Glenda, "I'm taking you with me." But Glenda was not in any hurry. It was safer, she felt, to be where an aide could hear if she called for help. She had heart problems, anxiety, memory loss and chronic fatigue. Her family had asked her to stay with them, but she did not want to babysit relatives. As she saw it, if God had wished her to have more children, he would have let her keep getting her period.

Varahn's family urged her to leave as soon as possible, even if it meant losing a month of rent. But where would she go? Varahn wondered. And then what would she do? The lady who lived across the hall had gone to see her daughter in Georgia, and now she was stuck there while all her things were here.

As the lockdown dragged on, Varahn felt herself sliding into a depression. Before March, she was always out with a client or at some community meeting. Now she was eating three meals a day on a rectangular folding table at the edge of her bed. She was gaining weight from staying inside. Her feet were swollen. Her back hurt.

She started taking walks, sometimes just a few blocks, to relieve the pain. The soccer field across the street, where kids played on Saturdays, was empty. Many of the stores on White Plains Road, Boston Road and Allerton Avenue, including the salons, were closed until further notice, and some days it felt like the entire world was at a standstill.

It wasn't just the forced isolation that discouraged her. Everything was happening on some sort of screen, and the tedious video engagements and text messages often left her frustrated. In her class for first-time campaigners, which had migrated to Zoom, the connection was always faltering, making it difficult to understand what anyone was trying to say.

At other times, she wasn't isolated enough. Her roommate rose at dawn and sold loose cigarettes throughout the day. People were always stopping by. Whenever Varahn was on a call or at a virtual meeting, the roommate muttered under her breath or cursed sarcastically. Once, the noise was so disruptive to the class that the instructor told Varahn to mute herself, which she found humiliating. What would have been merely an inconvenient pairing in normal times had under quarantine become an oppressively intimate arrangement. There was also the problem of Varahn's older sister, Childris, whose heart was starting to fail. The grief put a constant pressure on her days. All this made it hard to concentrate, and she soon fell behind on her studies. So many things about her path to the City Council were uncertain now anyway. Was a person of her age expected to knock on doors? Would she have to campaign through a computer screen?

Varahn began searching for a way to reclaim her freedom. She asked Mr. Stern for a room of her own. As far as she could tell, there was plenty of space in the building. A private accommodation could double as a little office for the council, she reasoned — somewhere that residents could feel comfortable speaking to her. But management never acted on her request. Victoria Kelley, a former jazz singer who had lived at Bronxwood for three years, suspected that Varahn's battle for the clothing allowance had turned administrators against her. Such retaliation is not unheard of, according to advocates who work with residents at adult care facilities. "If you don't have someone on the council to fight for you, nothing gets done, but Varahn did fight," Victoria told me. "Some of the naysayers got jealous."

With the arrival of spring, a different approach revealed itself to Varahn. First she rented a car, so she could get around more easily. Bright flowers fringed the patio, and slender trees cast ragged patches of shade on the sidewalk. Her errands had been piling up, too. She needed to buy cases of bottled water, pick up her son's stimulus check from her ex-landlord, haul her sheets to the laundromat after her roommate got bedbugs.

Then she started driving for the pleasure of it, humming along to power ballads on Christian radio and chatting on the phone with friends. She found herself going through the boxes in her U-Haul storage unit, making a mental inventory of all the things she didn't have space for at Bronxwood, like her slow cooker, her turkey roaster, her Ashley Stewart outfits, her dance costumes. One weekend, a few FOR SALE signs caught her attention. That was when she realized what was happening: She wanted out.

It was a complicated undertaking. Most apartments were too expensive, which is why she hadn't been able to get one in time last year. And even if she was lucky enough to find something affordable, she would have to keep working — perhaps, if salons weren't allowed to reopen, somewhere that wasn't a salon. Then again, she didn't want any of the residents to feel that she was leaving them behind.

One morning toward the end of July, Glenda's cellphone rang. The sound surprised her, because she had stopped paying the bill. When Glenda called the number back from the room's landline, it turned out to be Varahn, who announced that she was moving out the next day and promised to stop by in September "to pass the torch." Glenda told Varahn she was happy for her, and she was. But she wished her friend had let her know sooner. Hurshel, the vice president, was unable to step in, because he, too, had just left. After five years on the city waitlist for affordable housing, he'd finally landed a new spot. It was less than a block away from Bronxwood. "You have to get out of there," he warned his old friends.

That same week, Bronxwood laid off employees without warning, apparently because of the declining number of residents. There was no longer an aide for the fourth floor, according to three people who lived there, and there was no one to speak up about it. "I feel stripped naked, like we're getting ready for the slaughterhouse," Glenda said the next day. We were sitting down the street, and as staff trailed out of the building at the end of the afternoon shift — a long procession of teal and navy scrubs — some of them were wiping away tears. "Right now, the administration can say anything goes."

Glenda knew she did not want to serve as president, even in an interim capacity, and asked Renee, a former president, what to do. Renee was telling everyone who had asked her this question the same thing: She didn't have a clue. "We're so lost right now," Renee said to me in August. Her bingo crew had dwindled from more than 15 players to fewer than 10. She was pessimistic about the prospects for a socially distanced election: "We don't even know who is dead or alive."

Varahn had implied to Glenda that she was staying in the Bronx. In reality, she was moving to suburban Maryland. She had signed the lease for a one-bedroom apartment in a senior living community just a short drive away from her daughter's house. It was everything that Bronxwood was not: serene and quiet, lush with greenery.

She had told Glenda only half of the story because she couldn't quite believe her good fortune. "I feel so sorry because some of them are waiting there thinking that they will someday get an apartment," Varahn said. "If it wasn't for my associations" — the support from her family, her earnings from the salon — "I would be stuck there, too."

Her family was relieved about her departure, but Varahn remained uneasy. With a room of her own, she thought, or even a different roommate, she probably would have stayed. As it was, the likely return of the virus in the winter frightened her.

When she packed up her belongings, she felt as if she were packing up the future she had once imagined for herself. "By now, I would have been running for City Council, if this virus didn't happen," she said. "So I'm saying to myself, well, you know, that wasn't in God's plan." Though she kept her move a secret, one resident spotted her carrying boxes in the hallway and asked her, "Are you just going to leave us like that?" It was the same question she had been asking herself for months.

In a handwritten letter Varahn gave to Bronxwood's administrators before she left, she expressed her desire to remain president from afar until it was safe to hold an election. She had planned to retire there, the letter said, yet it was impossible to do so under the current circumstances. She expected Mr. Stern, or at least his secretary, to call to offer his regrets, but she never got a response. It made her feel as though nothing she had done at Bronxwood mattered — as though she had never lived there at all.

Ava Kofman reports on technology. To send Ava tips, email ava.kofman@propublica.org, or text 347-410-0113.