CREVE COEUR — Jerome Massey doesn’t know all that was done behind-the-scenes to help him get a new kidney by removing an unfair barrier based on his race. But he’s thankful it allowed him to get back to normal life, with long days at work and busy weekends with his children and grandkids stopping by for his barbecue.
“The law changed or something where it wasn’t just privileged people, it was all kinds of folks now,” said Massey, 53, who got a kidney transplant in February after more than a year on dialysis. “The law passed where everybody was equal to get a new kidney.”
For years, calculations that measured kidney function took a person’s race into account. That practice led to underestimating the severity of sickness in Black patients, negatively affecting when Black patients got added to the national transplant waitlist.
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That ended at the start of 2023, when the U.S. organ and transplant system required transplant hospitals to stop using race-based calculations after researchers and advocates determined the practice was based on outdated assumptions about race and biology.
Even further, hospitals were required to remedy past wrongs. Hospitals were given one year to pore through the records of patients already on the waitlist and determine if applying race-neutral calculations on past results would’ve gotten them on the transplant list earlier.
That would mean these patients could get credit for lost waiting time, moving them up the priority list for a transplant.
The effort led to dramatic changes for Black patients like Massey. About 30% of the 89,000 people on the national waitlist for a new kidney are Black patients, and that percentage is often even higher at transplant centers in the St. Louis region.
Barnes-Jewish Hospital officials say they reviewed past records of 318 Black patients (36% of its list). Of those, more than 80 received new kidneys who would still likely be on the waitlist.
The patients had an average of almost two years added to their wait times. That represents a huge chunk of what is often a three- to five-year wait.
SSM Health St. Louis University Hospital reviewed the records of 118 Black patients on the waitlist (42% of its list). Out of those, 68 gained additional wait time and 12 received new kidneys, hospital officials say.
Some of the patients might not be alive today if not for the change. Nationally, about 10% of patients on the kidney transplant waitlist die or become so ill they can’t get a transplant. The longer patients spend on dialysis, the sicker they become.
“Replacing race as a social construct with a biologically based measure is critical to reduce inequities in transplant access and outcomes, and makes the gift of life more available for all patients in need,” said SSM Health nephrologist Dr. Krista Lentine.
‘Make things right’
The work of reviewing records fell on the transplant nurse coordinators at hospitals. Jane Hughes, a coordinator at Barnes-Jewish Hospital, was deeply affected by the process.
Hughes found herself digging through records and making calculations at night after work and weekend mornings.
“When we started talking numbers, the team was just in awe by how quickly things evolved and how quickly this impacted our center and our patients,” she said.
Within just the first couple months of reviewing records and sending adjusted results into the nation’s transplant network, which maintains the waitlist, Hughes said that Barnes-Jewish Hospital transplanted 27 Black patients whose wait times were modified.
Nationwide, in just the first six months of implementing the policy, the Organ Procurement and Transplantation Network reported that more than 1,600 Black candidates had their wait times modified an average of 1.7 years, and more than 500 of them received kidney transplants.
The work energized Hughes. Every time she found additional time for a candidate, it made her happy, she said. “To me, that was the best thing that I could have ever told someone.”
Hughes likened it to giving a gift, but more.
“It wasn’t a gift, it was something that was owed to them,” she said. “It’s important work. It’s important that we make things right for all patients, no matter what your race is.”
The process involved notifying the patients of the work underway, and getting past medical records from primary care physicians, dialysis centers, other hospitals and laboratories.
Hughes led the effort, becoming quick and efficient at spotting the key data and knowing what math to perform.
“I told my team, you know what, I want to do this. Can you just give the project to me?” she said. “Because this is just something I am so passionate about.”
The team finished reviewing the records of all 318 Black patients on the waitlist by the end of July, months ahead of schedule.
“I spent a lot of time on my computer because it just meant a lot to me,” Hughes said. “It meant a lot to me to give back to our community.”
The change for kidney transplant patients is one example of how calculations involving race are coming under the microscope across health care.
Research is underway into how algorithms and formulas used in medical decisions adjust results based on race or ethnicity, often in ways that lead to the undertreatment of people of color.
Some doctors’ groups have already eliminated race-based formulas.
Obstetricians are no longer supposed to include race in determining the risk of a pregnant woman attempting vaginal birth after a prior C-section. The American Heart Association removed race from a commonly used calculator of people’s heart disease risk. The American Academy of Pediatrics removed a calculation that assumed Black children faced lower risks of urinary-tract infections than white children.
The new kidney guidelines are unique in that the race-neutral calculation not only must be used for all future patients, but also applied to the past results of current patients.
Dr. Jason Wellen, a Washington University transplant surgeon at Barnes-Jewish Hospital, said that’s important because even just a minor adjustment in the calculation measuring kidney function can determine whether someone can be listed for a transplant.
A patient cannot be listed until their kidney function is less than 20% or until they start dialysis, Wellen said.
“Who cares if it’s 21 or 19, but when it comes time to being able to list people within the regulation, it’s a drastic difference,” he said. “It could add years onto their wait time, which would get them a kidney much earlier.”
That means no longer having to spend hours each week connected to a dialysis machine to clean your blood, no longer feeling tired, being able to eat and drink things you couldn’t before and traveling freely.
It means having a better chance of surviving.
“We owe it to them to go back to their old records from years and years and years ago,” Wellen said.
He praised the quick completion of the historical work by the hospital’s transplant nurse coordinator team.
“It just shows you the bond that our nurse coordinators have with their patients they follow for years on our waitlist,” she said. “They’ve been very passionate about this to try to get their patients all the extra time that they deserve. It makes me very proud.”
‘A running train’
Massey went on the kidney transplant waitlist on Dec. 28, 2022, when he started dialysis. But reviewing his records showed that his kidney function was actually low enough to be placed on the waitlist nine months earlier.
He’s happy to no longer have to spend every Monday, Wednesday and Friday afternoons getting dialysis.
“Now I can do anything. I can take a cruise. I can take a two-week vacation. I can work as long as I want to because I ain’t gotta leave. I don’t have to go sit in a chair for four hours,” he said. “Having a kidney is wonderful thing.”
Just a few months after his transplant, Massey doesn’t really know yet what it’s like to feel well.
He was diagnosed with Type 2 diabetes in his 20s, he said. He stopped taking his insulin shots, not wanting to stick himself with needles anymore. He felt fine and didn’t think he needed them.
“But in the long run, I probably really did,” Massey lamented. “I got sick on the inside, not like everyday sickness.”
After years of working for temporary employment agencies, it wasn’t until he got a permanent job at a Ronnoco Coffee distribution center in St. Louis and good health insurance that he said he learned how damaged his kidneys were.
His primary care physician ran tests and referred him to a kidney specialist, who eventually started him on dialysis.
Through it all, Massey continued working 65-hour weeks at Ronnoco, fixing coffee equipment and managing other technicians. He often started work at 5:30 a.m.
“He didn’t stop. He just kept it going like a running train,” said his wife, Rhonda Massey, 50. “It became normal for him. He didn’t know anything else.”
He hated having to leave work early for his dialysis. And he hated having to take two months off to recover at home after the transplant surgery. He’s already back to working 55 hours a week.
“What else is there to do besides work?” Jerome Massey said. “I love my job. I love to work.”
While he never complains, Rhonda Massey said she notices that her husband is not as tired. They no longer have to worry about complications with his dialysis port, which sometimes landed him in the hospital.
“It was such a surprise and unexpected gift,” she said of the kidney. “It’s just a better way of life. He has a new life now.”
Hughes said her team’s work is not over. When a new patient who is Black gets added to the transplant list, they must continue to dig though the patient’s records and apply race-neutral calculations to past lab results.
By April 24, the team had reviewed the records of a total of 420 Black transplant candidates, 94 of whom have received a new kidney, Hughes said.
On average, each patient was given an additional 2.4 years of wait time, and 22 patients received more than five years. The most was 15 years.
Hughes said she’s unsure how much longer they will have to do the historical research.
“The hope is that now that centers have removed race from the calculations, that in the future, we won’t have to do this anymore,” she said, “because there will be no more discrepancies in the values.”