The pandemic killed so many dialysis patients that their total number shrunk for the first time in nearly half a century. Few people took notice.
By the time Cheryl Cosey learned she had COVID-19, she had gone three days without dialysis — a day and a half more than she usually waited between appointments. She worried how much longer she could wait before going without her life-saving treatments would kill her.
The 58-year-old Cosey was a dialysis technician for years before she herself was diagnosed with end-stage renal disease. After that, she usually took a medical transport van to a dialysis facility three days a week. There, she sat with other patients for hours in the same kind of cushioned chairs where she’d prepped her own patients, connected to machines that drew out their blood, filtered it for toxins, then pumped it back into their fatigued bodies.
Her COVID-19 diagnosis in the pandemic’s first weeks, after she’d been turned away from a dialysis facility because of a fever, meant Cosey was battling two potentially fatal diseases. But even she didn’t know how dangerous the novel coronavirus was to her weakened immune system.
Had she realized the risks, she would have had her daughter Shardae Lovelady move in. Just the two of them in Cosey’s red brick home on Chicago’s West Side, looking out at the world through the sliding glass door in the living room, leaving only for her dialysis.
After Cosey’s positive test in April 2020, Lovelady had to take her mother to a facility that treated patients with suspected or confirmed COVID-19. The facility fit her in for one of its last appointments the next day.
At that point, Cosey had gone more than four days without dialysis.
Four hours later, after Cosey completed her treatment, Lovelady returned to the nearly deserted building to bring her mother home, the sun having long disappeared from the sky. Cosey, dressed in a sweater and a green spring jacket, was disoriented, her breathing sporadic.
Alone with her mother on the sidewalk, Lovelady ran inside to ask workers for help getting Cosey out of her wheelchair and into her car.
“They offered no assistance,” Lovelady said. “They treated her as though she was an infection.”
(A spokesperson for the facility said employees aren’t allowed to help patients once they leave, for safety reasons.)
As Lovelady waited for paramedics to arrive, she grabbed a blanket from her car to wrap around her mother.
“My mother has COVID. I know she has COVID, but I didn’t care,” Lovelady said. “I hugged her and just held on until the ambulance came.”
Then she followed the flashing lights to the hospital.
In the three decades before the pandemic, the number of Americans with end-stage renal disease had more than quadrupled, from about 180,000 in 1990 to about 810,000 in 2019, according to the United States Renal Data System, a national data registry. About 70% of these patients relied on dialysis in 2019; the other 30% received kidney transplants.
The Midwest stood out as the region with the highest rate of patients with the disease, and Illinois had the nation’s third highest prevalence after Washington, D.C., and South Dakota, according to the Centers for Disease Control and Prevention.
A rare bright spot was the downturn in the death rate. Although diagnoses have been going up, death rates for patients who are on dialysis have declined since the early 2000s.
Then COVID-19 struck. Nearly 18,000 more dialysis patients died in 2020 than would have been expected based on previous years. That staggering toll represents an increase of nearly 20% from 2019, when more than 96,000 patients on dialysis died, according to federal data released this month.
The loss led to an unprecedented outcome: The nation’s dialysis population shrank, the first decline since the U.S. began keeping detailed numbers nearly a half century ago.
They were COVID-19’s perfect victims.
“It can’t help but feel like a massive failure when we have such a catastrophic loss of patients,” said Dr. Michael Heung, a clinical professor of nephrology at the University of Michigan. “It speaks to just how bad this pandemic has been and how bad this disease is.”
Before most patients reach advanced kidney failure, they are diagnosed with diabetes, hypertension or a host of other underlying conditions. Their immune systems are severely compromised, meaning they are essentially powerless to survive the most dangerous infections.
Many are old and poor. They also are disproportionately Black, as was Cosey. A 2017 study called end-stage renal disease “one of the starkest examples of racial/ethnic disparities in health.” Those inequities carried through to the pandemic. Dialysis patients who were Black or Latino, according to federal data, suffered higher rates of COVID-19 by every metric: infection, hospitalization, death.
Their deaths went largely unnoticed.
To get their treatments, the majority of dialysis patients in the U.S. must leave the relative safety of their homes and travel to a facility, often with strangers on public or medical transportation. Once at the dialysis center, they typically gather together in a large room for three to four hours.
The fear of contracting the virus was enough to keep many from venturing out for medical care, including those already on dialysis and those set to get the treatment for the first time. Exactly how long patients can go without dialysis depends on a number of factors, but doctors generally begin to worry if they miss two of their thrice-weekly sessions.
Dr. Kirsten Johansen, director of the United States Renal Data System, said the rates of people starting dialysis had been relatively stable until the pandemic. “Then the floor fell out,” she said in an interview.
COVID-19’s collateral damage played out in other ways as well. It meant that people delayed going to the hospital for everything from heart disease to cancer. For dialysis patients, whose life expectancy in some cases is three decades shorter than the general population, the results were calamitous. Hospitalizations of dialysis patients for reasons unrelated to COVID-19 dropped 33% between late March and April of 2020, federal data shows.
(This story was originally published by ProPublica.)