Surgical tools used in a kidney transplant in 2016. The agency that oversees organ allocation, the United Network for Organ Sharing, is under investigation after a report documenting the loss and wastage of donor organs, often due to problems with organ transportation. Molly Riley/AP Hide caption
For the past decade, Precious McCowan’s life has revolved around organ transplants. She is a graduate student from Dallas studying human behavior and has already survived two kidney transplants. And in the midst of her own end-stage kidney disease, her two-year-old son died. She decided to donate his organs in hopes they would save a life.
Now her kidneys are failing again and she faces the possibility of needing a third transplant. Meanwhile, the organization that oversees donations and transplants is scrutinizing how many organs are wasted instead of helping patients like her. The agency, the United Network for Organ Sharing, received a bipartisan tongue-lash at a recent congressional hearing.
“Patients, we don’t look at that,” McCowan said, referring to the policy debates. “We’re like, ‘Hey, I need a kidney for me. i need her now I’m fed up with dialysis. I feel like I’m dying.”
The number of kidney transplants rose 16% last year due to a new policy implemented by UNOS that prioritizes sicker patients over those living closer to a transplant center.
Nevertheless, almost 100,000 patients are waiting for kidneys and even more for other organs. Approximately 5,000 die on the waiting list every year – even if good donor organs end up in the trash. A two-year investigation by the Senate Finance Committee uncovered numerous incidents that were not previously publicly disclosed.
- 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 days later.
- Kettering, Ohio: In June 2020, a transplant recipient was informed that he had accidentally received an organ from a donor who had cancer and was likely to develop cancer.
UNOS has held the contract to manage organ distribution since the country’s transplant system began in 1984, and now US senators — both Democrats and Republicans — are wondering if it’s time for another organization to step in.
“The organ transplant system as a whole has become a dangerous mess,” Senator Elizabeth Warren (D-Massachusetts) said during the Aug. 3 hearing. “Right now, UNOS is 15 times more likely to lose or damage an organ in transit than an airline loses or damage your luggage. That’s a pretty terrible record.”
Outdated technology has no way of tracking organs in transit
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The investigation blames outdated technology. The UNOS computer system can go down for an hour or more at a time, delaying games when every hour counts. There is also no standard way to track an organ, even though companies like Amazon can locate any package anywhere, anytime.
“I can’t even get a kidney that’s 20 miles from my transplant center because UNOS thinks it’s in Miami,” said Barry Friedman, director of the transplant center at AdventHealth in Orlando. “It was actually in Orlando, 20 miles away.”
In the decade between 2010 and 2020, the congressional report found that UNOS had received 53 complaints about shipments, including numerous missed flights, resulting in canceled transplants and discarded organs. The report also cites a 2020 KHN investigation that uncovered many more incidents — nearly 170 transport snafus from 2014 to 2019. Even when organs arrive, transplant surgeons say the lack of tracking leads to prolonged periods of “cold time.” leads – if there are organs in transit without blood circulation – because often the transplant surgeons cannot start anesthesia on a patient until the organ is physically in hand.
One in four potential donor kidneys is wasted today, according to the latest UNOS data. And that number has worsened as organs are transported further to reach sicker patients under the new allocation policy.
Shipments of organs arrive damaged or “crushed”.
A kidney arrived at the University of Alabama-Birmingham in 2014 frozen and unusable, said Dr. Jayme Locke, who runs the transplant program. In 2017, a package with obvious tire marks was ‘crushed’ (although, remarkably, the organ was recovered). And one week in May of this year, Locke said, four kidneys had to be discarded because of unavoidable errors in shipping and handling.
“Opacity at UNOS means we have no idea how common fundamental mistakes are happening across the country,” she said.
UNOS CEO Brian Shepard has already announced his resignation for the end of September. He defends the organization he led for a decade and points to the rising rate of transplants.
The new kidney allocation policy, which has been contested in court, is partly responsible for this increased transplantation rate. The policy also contributed to equity gains, increasing transplants for black patients by 23%. Black patients, who are more likely to suffer from kidney failure, have had trouble getting onto transplant lists.
“While there are things we can improve – and we do every day – I think it’s a strong organization that has served patients well,” Shepard said.
Another independent government report released this year found that any blame should be shared with hospital transplant centers and local organizations that procure organs from donors. The three units work together, but tend to morph into a triangular firing squad when people question why so many patients are still dying waiting for organs.
“[UNOS] is not the only cause of problems with the efficiency of the system,” said Renée Landers, a law professor who leads the biomedical concentration at Suffolk University. She was a member of the committee that helped produce the broader report. “Everyone had some work they needed to do.”
Recent watchdog reports, as well as several ongoing lawsuits over revised organ distribution charts, are all noise for Dallas resident Precious McCowan as she faces the prospect of trying to get on another waitlist. She said she’s encouraged by the rising transplant rate, particularly for black patients like herself, but also worried she might not be so lucky with a third round on the waiting list.
“I just need one kidney that works for me,” she said. “And I need it now.”
This story comes from NPR’s health reporting partnership with Nashville Public Radio and KHN (Kaiser Health News).