For the past decade, Precious McCowan’s life has revolved around organ transplants. He is a doctoral candidate studying human behavior in Dallas who has survived two kidney transplants. And in the midst of her end-stage renal disease, her 2-year-old son died. He chose to donate his organs in hopes of saving a life.
Now her kidney function is failing again, and she faces the possibility of needing a third transplant. But the process of finding that life-saving organ is fraught with problems. About 5,000 patients die on the waiting list every year – even perfectly good donated organs end up in the trash. The organization that oversees donation and transplantation is under scrutiny to determine how many organs are going to waste. The organization, the United Network for Organ Sharing, received bipartisan tongue-lashing at a recent congressional hearing.
“Patients, we’re not seeing that,” McCowan said, referring to the policy debate. “We’re like, ‘Hey, I need a kidney for me. I need it now. I am tired of dialysis. I feel like I’m dying.’
The number of kidney transplants increased by 16% last year under a new policy implemented by UNOS that prioritizes sicker patients over patients who live closer to a transplant center. Still, about 100,000 patients are waiting for kidneys and more other organs.
A two-year investigation by the Senate Finance Committee uncovered many facts that had not been made public before. A few examples:
- Charleston, South Carolina: In November 2018, a patient died after receiving an organ with the wrong blood type.
- Las Vegas: In July 2017, two kidney recipients contracted a rare infection. One died after a day.
- Kettering, Ohio: In June 2020, a transplant recipient was informed that he had accidentally received an organ from a donor who had cancer and possibly developed cancer.
UNOS has held the contract to manage organ distribution since the nation’s transplant system began in 1984, and now U.S. senators — both Democrats and Republicans — are questioning whether it’s time for another entity to step in.
“The organ transplant system as a whole has become a dangerous mess,” Sen. Elizabeth Warren (D-Mass.) said during an Aug. 3 hearing “Right now, UNOS is 15 times more likely to lose or damage a limb in transit than an airline losing or damaging your luggage. It’s a terrible record.”
The investigation blamed outdated technology. The UNOS computer system went down for an hour or more at a time, delaying matches as each hour counted. There is no ideal way to track an organ, even though companies like Amazon can locate any package, anywhere, anytime.
“I couldn’t get a kidney 20 miles from my transplant center, UNOS thinks it was in Miami,” says Barry Friedman, executive director of AdventHealth’s transplant center in Orlando, Florida. “It was actually 20 miles away in Orlando.”
From 2010 to 2020, the congressional report found, UNOS received 53 complaints about transportation, including numerous missed flights that resulted in the cancellation of transplants and discarded organs. The report also cites a 2020 KHN investigation that uncovered many more incidents — nearly 170 transportation failures from 2014 to 2019. Even when organs arrive, transplant surgeons say the lack of tracking leads to long “cooling times” — when organs are in infusion without blood circulation in transit — because transplant surgeons often can’t start anesthesia on a patient until the organ is physically in hand.
According to the latest data from UNOS, one in 4 possible people’s kidneys are now failing. Under the new allocation policy, the number worsened as organs traveled farther to reach sicker patients.
At the University of Alabama-Birmingham, one kidney was frozen and unusable in 2014, said Dr. Jaime Locke, who directs the transplant program. In 2017, a package was “cushioned” with apparent tire marks on it (although, remarkably, the organ was recovered). And in one week in May of this year, Locke said, four kidneys had to be discarded because of avoidable errors in transportation and handling.
“The lack of transparency at UNOS means we have no idea how often basic mistakes happen across the country,” he said.
UNOS CEO Brian Sheppard has announced that he is stepping down at the end of September. Pointing to the rising rate of turnover for the organization he has led for a decade.
The new kidney allocation policy, which was challenged in court, is partly responsible for that increased transplant rate. The policy also contributed to equity gains, increasing transplants for black patients by 23%. Black patients, who are more likely to have kidney failure, have had difficulty getting on the transplant list.
“While we can improve — and we do every day — I think this is a strong organization that has served patients well,” Sheppard said.
Another independent government report published this year found that any blame should be shared with hospital transplant centers and local organizations that collect organs from donors. The three agencies work together but tend to become a triangular firing squad when people start asking why so many patients still die waiting for organs.
“[UNOS] “Efficiency in the system is not the only source of problems,” said Renee Landers, a law professor who leads the biomedical concentration at Suffolk University in Boston. She was on the committee that helped draft the comprehensive report. “Everybody had some work they had to do.”
The latest watchdog report, as well as several ongoing legal battles over revised organ distribution maps, are just noise for Dallas transplant patient McCowan, as he faces the prospect of trying to get on yet another waiting list. He said he’s encouraged by the rising transplant rates, especially for black patients like himself, but fears he might not be so lucky with a third round on the waiting list.
“I just need a kidney that works for me,” she said. “And I need it now.”
This story is part of a partnership that includes Nashville Public Radio, NPR and KHN.
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