They and several witnesses laid those problems at the feet of the United Network for Organ Sharing, the nonprofit agency that has run the U.S. transplant system for 36 years under a contract with the government that is worth about $64 million a year. Its executive director, Brian Shepard, was on hand to hear the condemnation and defend against it.
“You should lose this contract,” Sen. Elizabeth Warren (D-Mass.) told Shepard. “You should not be allowed anywhere near the organ transplant system in this country.”
In an emailed statement, UNOS officials expressed dismay at the tone of the hearing. “We were surprised and disappointed by the Senate Committee on Finance’s misunderstanding of the role UNOS has been assigned by the government within the nation’s organ donation and transplant system,” the statement said. “Still, we remain dedicated to working with Congress to improve the system, which saves more lives every year. We are proud to serve all patients who rely on us to accomplish this lifesaving work every day.”
The hearing followed the committee’s 2½-year investigation of the transplant system’s problems, which found considerable evidence of the deficiencies raised by the lawmakers, including a UNOS report that 70 people had died after contracting diseases from transplanted organs.
The Washington Post also reported Sunday that the critical computer system that coordinates the transfer of donated kidneys, livers and hearts to desperately ill patients relies on out-of-date technology that has crashed for hours at a time and has never been audited by federal officials for security weaknesses or other serious flaws.
“It’s obvious there are serious problems in the organ procurement and transplant system and it’s not keeping up,” the panel’s chairman, Sen. Ron Wyden (D-Ore), told Shepard. “Patients die every day while they wait.”
About 106,000 people are awaiting transplants in the United States, the vast majority seeking kidneys. About 22 of them die every day, according to the National Academies of Sciences, Engineering and Medicine. In 2021, 41,354 organs were transplanted, a record.
Researchers, activists and others have insisted for years that the system could do much better if the myriad problems were addressed and the 57 organizations that procure organs from dead patients were held to account for poor performance. UNOS has largely abdicated that responsibility; Shepard said Wednesday that its “peer review” function makes it more of a coach that helps those organizations and transplant centers improve than a regulator.
After years of controversy, the government took steps in 2019 to hold the worst of the procurement groups accountable. According to statements at Wednesday’s hearing, 22 organ procurement organizations — more than a third of the total — are failing.
The committee heard testimony from witnesses that the transplant system’s shortcomings fall hardest on poor, rural and minority recipients, some of whom do not make the waiting list because of inadequate care or difficulty competing with more affluent patients. Patients with resources can be listed at numerous transplant centers, while those on Medicaid are funded for transplants only in their home states.
“Black people and people of color are less likely to receive transplants,” said Calvin Henry, a double-lung transplant recipient who serves on a UNOS patient committee.
Alabama transplant surgeon Jayme Locke said she received four useless kidneys from four separate OPOs in a single week in May. The organs were ruined in transit or when they were taken out of a donor. On another occasion, she said, she received an organ that appeared to have tire tracks on the box.
She described UNOS’s leadership as an “insular club” and said she and others have been subjected to “intimidation” after calling for Shepard’s resignation earlier this year. Shepard is stepping down at the end of September, when his current contract ends.
Shepard said UNOS disagrees with a 2021 assessment by the U.S. Digital Service that found his group’s technology out of date and vulnerable to hacking. He said the system repels hacking attempts every day. He strongly denied an assertion in the Digital Service’s report that UNOS has threatened to take the technology and run it on its own, even without a government contract.
Asked why organs are not tracked the way online merchandise is, Shepard said UNOS has developed a tracking system that some of the procurement organizations have adopted. But Diane Brockmeier, president of one of those groups, Mid-America Transplant, said she had tested the product and found it less effective than a commercially available alternative.
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