“The OPTN treats root-cause analyses confidentially, in order to ensure candor and thoroughness by all participants in the process, similar to peer review,” the network said.

The surgeons group also asked the network to issue a supplemental report detailing the number of affected patients and the steps taken to ensure more blood-type issues do not occur.

In its response to the surgeons, the network said that its monitoring report “worked as intended to identify trends that deviated from the project outcomes” and that it disclosed the problems appropriately to stakeholders.

“We are committed to catching potential issues as early as possible, but we recognize that there are circumstances, such as this one, where some time must pass in order to allow for enough post-implementation data to stabilize under the new system,” the network wrote.

An anxious wait

Seth Karp, a former board member at the Organ Procurement Transplant Network and director of the Vanderbilt Transplant Center, criticized the network’s handling of the situation.

“They need to be completely transparent about the error, how it was made, when it was made, when it was figured out that the error was made, what they’re doing to rectify it,” Karp said. “They need to get a group of experts together to look at this and ensure it never happens again.”

The issue with the algorithm did not go entirely unnoticed by patients. Several commenters on the web page describing the proposed fix noted the harm to O patients.

“I am an O-blood type and have been on the ‘Wait’ list for five months. I have not even had a dry run!” one unnamed commenter wrote. “To say I don’t feel like I’m in the game is an understatement. I have always felt being an O-patient has been a disadvantage. I commend OPTN for identifying the disparity with O patients and I support corrective life saving changes to the CAS point system.”

David Sperlein, 62, was one of the patients left anxiously awaiting a lung transplant last year. Sperlein, who has type O blood, caught COVID-19 in October 2022 and was hospitalized. After his release, Sperlein still struggled to breathe, which he and his wife thought was the result of ongoing heart problems.

Weeks later, Sperlein underwent a double bypass operation, but his breathing got worse and he could hardly walk. Doctors determined he needed a lung transplant, but he didn’t receive a donor lung until January 2024, even though the doctors told Sperlein he was sick enough to have a competitive score in the system.

“In the beginning, when they put me in the list, I thought, all right, it could be any time,” said Sperlein, who lives in Carroll County, Maryland. “Then a month or two later, I’m starting to get a little, not discouraged, but I’m wondering when this is going to happen.”

His wife, Jeannine, would check the organ network’s website often and was nervous about when they would receive the organ. She praised their medical staff and said they kept the couple up to date, including on the changes the transplant network made to the rules for lung allocation.

“They were trying to advocate as much as they could for a change because they were seeing, like David, that the O’s were being passed over because there weren’t enough around,” Jeannine said. “When that policy changed in October, for O patients, our hope got a little bit better.”

Dr. Robert M. Reed, medical director of the University of Maryland lung transplant program, called the error with the algorithm a “perplexing mistake” that “discriminated” against O patients. During the time the faulty rules were in effect, the program’s number of O transplants fell by roughly half, Reed said.

Since the fix was made, the center has seen an uptick in O transplants. But, Reed added, a prolonged wait can cause longer-term harm.

“If you take a patient and they’re stable and robust today, if you wait until they’re (sicker), they’re not going to do as well in the long run,” Reed said. “They just struggle to really bounce back and experience the same quality of life and longevity that you can have with a good transplant. Timing it later in the progression of the disease is not favorable.”

“A lot of patients on the wait list are, like Mr. Sperlein, at risk for deterioration. He was lucky,” Reed added. “We got him a good lung and he’s doing well. But that’s the exception rather than the rule.”

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