Threats to Whistleblowers, Rampant Fraud Plague Transplant System, Lawmakers Told

Presumably deceased organ donors waking up and mouthing, “Help me.” Organ transplant executives threatening whistleblowers with being “cremated alive.” Pancreases that could be used for transplant put in freezers and then getting “lost.” Rampant Medicare and Medicaid fraud.

These were examples of problems with the current organ transplant system that House members heard about from witnesses Wednesday at a House Energy & Commerce Oversight and Investigations Subcommittee hearing on the implementation of the Securing the U.S. Organ Procurement and Transplantation Network Act, which was signed into law last year.

Subcommittee members on both sides of the aisle expressed horror and dismay that these problems hadn’t been fixed. “The testimony about donors that are still alive … is absolutely terrifying,” said Rep. Debbie Lesko (R-Ariz.). She recalled that when she served in the Arizona state legislature, “every year on the lawn at the state capitol, the Arizona Donor Network had a big event to encourage people to sign up for the donor list, and if word got out to more people that these types of things were happening, I think there’d be less donors to sign up.”

Lesko was referring to testimony by Greg Segal, founder of a transplant patient advocacy group called Organize. Segal, who has had several family members receive heart transplants, said a whistleblower told him that “he was instructed to recover organs from someone who was mouthing the words, ‘Help me.’ He decided not to proceed, and the person ended up surviving.”

The organ transplant law was designed to modernize and improve the nation’s organ procurement and transplantation system, the subcommittee explained in a memo about the hearing. “One key provision of the act is the requirement that the OPTN [Organ Procurement and Transplantation Network] Board of Directors be independent and separate from the contractor managing the network,” the memo noted. “The act also aims to address longstanding conflicts of interest and improve transparency and accountability within the OPTN.”

Witnesses testified that the OPTN was rife with conflicts of interest. Seth Karp, MD, surgeon-in-chief at the Vanderbilt University Medical Center in Nashville, Tennessee, said that despite the law’s provision, the OPTN board is filled with board members from the United Network for Organ Sharing, the contractor that manages organ procurement.

“Patients are continuing to die in the United States waiting for an organ, due to self-interest, incompetence, and mismanagement,” Karp said. “As a researcher, surgeon, and board member, I witnessed OPTN cover-ups, both in broad daylight and in back rooms. In broad daylight, the OPTN ignores research that shows huge numbers of missed donors, and lobbies against bipartisan, data-driven measures to hold OPOs [organ procurement organizations] accountable … In the back room, OPTN leaders assure that no OPO leader will ever be held accountable for poor performance, and seek to prevent competition in the OPTN contract bidding process.”

“You’ve empowered HRSA [the Health Resources and Services Administration] to break up the OPTN monopoly … but without your continued oversight, OPTN leaders will continue to gut meaningful reforms,” he told the subcommittee. “I urge you to enforce the law that ensures OPTN works to increase the organ supply.”

Lesko asked witnesses what could be done to solve these problems. “De-conflicting the OPTN board and moving to [independent] board appointments,” said Segal, noting that the OPTN’s Membership and Professional Standards Committee (MPSC), which is supposed to investigate patient safety claims, has always been a “captive body … If there were a functioning MPSC and they were meaningfully investigating these claims so that people felt comfortable even bringing these claims to the MPSC in the first place, that would be an excellent deterrent.”

In addition, he said, “there are no licensure requirements that CMS [Centers for Medicare & Medicaid Services] has ever imposed on OPO staff who are interacting with donor patients … An Uber driver told me that as a side job, he does organ recoveries for his local OPO; I think we need to professionalize this.”

Jesse Roach, MD, a nephrologist who is senior vice president of government relations for the National Kidney Foundation, said his organization “commends Congress and HRSA for taking on this ambitious project … But while progress has been made, we remain concerned about the lack of transparency, patient focus, and equity in the organ transplant system.”

One concern, he said, is the increasing number of kidneys that are thrown away each year; he pointed out that one in four recovered kidneys are not transplanted.

In 2023, for example, “there were 8,574 kidneys recovered with intent to transplant, but were later discarded; that comes out to about 23 kidneys wasted per day,” he said. “At the same time, an average of 12 people die each day waiting for a kidney transplant. This is a system failure and completely unacceptable.”

Subcommittee members also had other specific concerns with the current system. “I know that 80% of organ transplant patients are in urban areas,” Rep. Jan Schakowsky (D-Ill.) said to Karp. “What are we doing to make sure that we can reach people outside of the urban areas and make sure that they become eligible and get treated?”

“That’s something that I wrestle with on a regular basis,” Karp said. “We had a transplant center in the eastern part of Tennessee that closed; it served a rural population … This has to be part of the national policy that we need to have these smaller centers. We need to keep them open.”

Rep. Michael Burgess, MD, (R-Texas) said the allegations against OPTN “were among the most serious allegations I’ve ever seen,” especially with respect to Medicare fraud.

“We can’t really pay for all the Medicaid and Medicare that we promised people … We should be interested in every dollar that we spend inappropriately in Medicare,” he said. “The damage to the patients, the damage to the credibility of the system in which you all work, I almost don’t know how you recover from that.”