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 was worried about how long she could wait before she would be able to go without her life-saving treatments.
Cosey, now 58, worked as a dialysis technician before being diagnosed with end-stage kidney disease. She would take a medical transport van to the dialysis facility three times a week after that. 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.
She would have moved in her daughter Shardae Lovelady if she had known the risks. 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 fitted her in for one last appointment the next day.
Cosey had been dialysis-free for more than four consecutive days.
After Cosey had completed her treatment, Lovelady returned four hours later to the abandoned building to bring her mother home. The sun had long since disappeared from the sky. Cosey was wearing a sweater and green spring jacket. Her breathing was sporadic.
Lovelady ran in the direction of workers to assist Cosey, who was alone on the sidewalk with her mother.
“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.)
Lovelady was waiting for paramedics to arrive so she grabbed a blanket out of her car and wrapped her mother around it.
“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.”
She then followed the flashing lights towards the hospital.
The number of Americans suffering from end-stage renal disease more than quadrupled in the 30 years preceding the pandemic. It was approximately 180,000 in 1990, and 810,000 in 2019, according the United States Renal Database System, a national data register. In 2019, around 70% of these patients were on dialysis, while 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 shining light was the decline in the death rates. Although the number of dialysis patients has been increasing, their death rates have decreased since 2000.
Then COVID-19 came into play. Nearly 18,000 more dialysis patient died in 2020 than could have been predicted based on past years. This staggering death toll is nearly 20% more than the 2019 total of 96,000 dialysis patients. 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.”
Most patients are diagnosed with diabetes, high blood pressure, and other underlying conditions well before they reach advanced renal failure. Their immune systems are severely compromised, which means they are essentially powerless and unable to survive most serious infections.
Many are poor and old. They are also disproportionately Black, just like 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. According to federal data dialysis patients who are Black or Latino suffered higher rates COVID-19 in every metric: infection and hospitalization, death, and even suicide.
Their deaths went largely unseen.
Most dialysis patients in America must travel outside their homes to receive their treatment. They often travel with strangers, sometimes on medical or public transportation. Once they arrive at the dialysis centre, they usually stay together for three to four hours in a large space.
Fear of contracting this virus kept many people from seeking medical attention, both those who had dialysis before and those who would like to receive it for the first. There are many factors that affect how long patients can live without dialysis, but doctors tend to worry about patients who miss two of their three-weekly sessions.
Dr. Kirsten JOHANSEN, director of United States Renal Data System, stated that dialysis rates were relatively stable prior to the pandemic. “Then the floor fell out,” she said in an interview.
COVID-19’s collateral damage played out in other ways as well. This meant that people waited to go to the hospital for everything, from heart disease to cancer. cancer. The results were devastating for dialysis patients, whose average life expectancy is three decades less than that of the general population. Between late March 2020 and April 2020, the number of dialysis patients admitted to hospital for reasons not related to COVID-19 decreased by 33%. federal data shows.
Dr. Delphine Tuot is a nephrologist who is also an associate professor at University of California San Francisco. She also works as a Trauma Center Trauma Center Trauma Center Trauma Center and Zuckerberg San Francisco General Hospital. She focuses on vulnerable populations and was compelled to ask her patients to come in for regular dialysis appointments.
One of them was a 60 year-old man who suffered from shortness of breath and ended up in the hospital in February. Tuot stated that although he initially resisted dialysis, he eventually accepted it after realizing that he would die without it.
Yet, he continued to miss 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 vicious 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 received dialysis, was sent home, and got back on his feet.
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 initial efforts to isolate dialysis patients and mask their symptoms, they continue to be treated at dialysis centers. one studyThe rate of COVID-19 hospitalizations for dialysis patients between March and April 2020 was 40x higher than that of the general population.
Despite skyrocketing hospitalizations and the approval of vaccines, it took three more months before federal officials gave vaccinations to dialysis centers despite advocacy groups calling for this population to 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.
Home dialysis, which has been proven to be safer for patients during the pandemic is not available for many, especially Black or Latino patients. Tuot said that Nephrologists had advocated for greater access to home dialysis before the pandemic.
“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. Cosey called Lovelady from her hospital room the next day. Lovelady noticed a marked improvement in her condition from the night before.
“She sounded like herself,” Lovelady said. “We joked around a little bit. I asked her what type of medicine she was taking. She said they started her on dialysis.”
Lovelady added each of her siblings, cousins, and brother to the call, one by one. They told Cosey she had scared her, but now that she was feeling better they joked that they needed to bring her 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.
The impact of the pandemic on dialysis facilities has been overlooked, even though it rocked the entire health care system.
The Centers for Medicare & Medicaid Services typically monitor the facilities through routine inspections and surprise visits to investigate specific complaints. Medicare data shows that federal officials are two years behind in more than 5,000 inspections of dialysis facilities across the nation, and three years behind in more than 3,000. ProPublica found that inspections of dialysis facilities by government officials have declined by more than 30% over the past two years. A greater proportion of investigations was devoted to complaints. In 2019, 35% were devoted to complaints. It jumped to 51% last year.
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 made these problems even more difficult. 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 asking for more money the centers were approved to receive an additional fiscal year 2022.
According to federal records, investigators found violations of COVID-19 and other general safety lapses when they visited dialysis facilities.
According to inspection reports, a Kentucky nurse failed to properly dilute an anti-biotic and caused the death of a dialysis patient who began treatment just before the pandemic. 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.
According to federal records, another patient died at a New York facility after losing more that 1 1/2 pints worth of blood after their catheter was disconnected. 16 people were underreported the number of deaths at the same facility during the first 11 months after the pandemic.
Federal officials issued the most serious citation to an Indiana facility because they refused to provide dialysis to a patient with 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. They did not receive the full treatment they needed.
End-stage renal patients are estimated to live in congregate settings like nursing homes or assisted living facilities, with between 5% and 10%. The same factors that led to nursing home populations being decimated — age, health, difficulty isolating — applied to those dialysis patients. According to the CDC, the rate at which they contracted the virus was 17 times that of those who were living independently in the first months. 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. According to Concerto Renal Services’ official, her smile and supportive nature made her a popular coworker.
On April 21, 2020, Ogunnubi’s body began to ache, and she was sent home early from work. Ogunnubi was taken to a hospital where she was tested positive for COVID-19. According to federal and county records, she died three days later.
Officials from the Occupational Safety and Health Administration cited Concerto and imposed a penalty amounting to $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 was ill the same time as Ogunnubi’s, contracted COVID-19 at that time, but they 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.
Many experts believe the pandemic could have been even worse, despite how devastating it was. Dr. Alan Kliger is a Yale School of Medicine Clinical Professor of Medicine. He co-chaired American Society of Nephrology’s COVID-19 Response Team. The team held weekly meetings with chief medical officers of 30 dialysis companies including Fresenius, DaVita, and Fresenius. Kliger stated that the facilities had implemented universal masking and patient screenings long before the CDC recommended them. They also treated COVID-19-related patients in separate shifts, or at specially 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.
Weinhandl now wonders if dialysis patients would be prioritized if the federal government approves another round of boosters to 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 like siblings who loved each others without regard for their condition or judgment. After Oscar started dialysis in 2018, Donna picked Oscar up from his appointments three times a week. When his feet were too swelling for him to reach, she cut his toenails and massaged his feet when he woke up in the morning.
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. Oscar Perez, a 38-year old Latino father, was suffering from hypertension and diabetes. Doctors performed coronary bypass surgery in January. He was not yet eligible to receive the vaccine, but he was tested by the hospital for COVID-19 at his admission. He was negative.
Jan. 18 was his uncle’s wake. Oscar went home the next day. His family stated that his uncle died from complications due to missing too many dialysis appointments. Oscar became confused and mumbling with pain the next morning, and collapsed at home. This was due to the coronavirus in his lungs. He was taken back to the hospital. Donna Perez was called by a doctor to inform her that her brother had received positive results and that he 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 and another brother and his girlfriend and drove to the hospital to visit Oscar. They advised doctors to try to revive him if he stops breathing.
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. They were able to visit Oscar in his hospital room wearing 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 reacted strongly and told her to be strong.
Donna advised them to let Oscar go. He died shortly after.
“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 to create the Medicare End Stage Renal Disease Program. This program guaranteed coverage for medical care including dialysis and transplants. It is the only Medicare entitlement program that covers a specific disease. Some have credited it with saving more lives than any other federal program. Although Medicare covers only those over 65 and the disabled, it is available to all people with end-stage kidney disease.
In 2019, Medicare spending on patients with end-stage renal disease topped $50 billion. Even with that budget, the agency hasn’t been able to fix persistent health disparities. In that year, Black patients were four times more likely to get the disease than their white counterparts.
Black patients also went through chronic kidney disease and end-stage renal disease three to one three times more often than 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.
Home dialysis, which is cheaper than in the center dialysis, offers better survival rates, greater quality of life, and greater flexibility, is another area of concern. All patients face barriers to home dialysis, but in 2019, the percentages of Black patients and Hispanic patients who received home dialysis were 10% and 11%, respectively, while white patients and Asian patients were 17% and 17%, respectively.
The push to close this gap is gaining momentum, supported by federal data that showed COVID-19 hospitalizations rates for patients who underwent home dialysis from late March to early June 2020 were between one-quarter to one-third that of patients traveling to dialysis centers.
“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 at the idea of having to clean the area around the catheter to prevent infection. But, Campbell said, that’s where patient education comes in. Peritoneal Dialysis, the most common type, is performed at night when the patient is asleep and does not require blood flow 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 directs one of the few nephrology fellowships programs in the nation where doctors can spend an additional year in home dialysis. He stated that the results have been so promising that they are looking 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, when Medicare was established, 40% of Medicare patients were receiving home dialysis. Today, around 13% of patients receive dialysis at their 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. U.S. Rep. Bobby Rush (an Illinois Democrat) and Rep. Jason Smith (a Missouri Republican) proposed legislation that would require Medicare workers to be paid by Medicare for patients who require additional assistance with home dialysis. The bill, which was introduced with little fanfare, calls for increased patient education and a federal study to analyze racial disparities.
Hong Kong, which has a third of all patients on peritoneal dialysis, is a world leader in home treatment. Patients in Hong Kong receive peritoneal dialysis first, unless there are medical reasons that would prevent it.
Dr. Isaac Teitelbaum is a nephrologist and has been the medical director of home dialysis at the University of Colorado School of Medicine from 1986 to 1986. He believes that increased training for clinicians as well as incentives for patients (such a reduced copay or tax credit) could encourage more patients dialyzing 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.”
According to her family, Cheryl Cosey did not receive home dialysis. Shardae lovelady stated that it may have made a difference for her mother.
Cosey’s health deteriorated quickly after the call from her hospital bed. According to hospital records Cosey was transferred to the intensive-care unit by doctors who placed her on a ventilator and gave her medication that would push oxygen from her lungs into her bloodstream.
The family gathered their courage. Lovelady drove to Minnesota in order to pick up her sister. She brought everyone together for a big meal, just like her mother used to.
Lovelady and the sister stayed up late talking, then finally fell asleep when the house quietened.
When the phone rang at three in the morning, Lovelady recognized the hospital’s 312 area code.
Everything she had done in preparation for that moment was suddenly lost, and she let herself hope.
The call was brief. She never turned on her bedroom light. She turned to her sister, who was sleeping next to her, to wake her up and nudged.