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WASHINGTON — On Wednesday, two transplant doctors, a watchdog and a nephrologist-turned-lawyer sat before members of Congress to talk about the nation’s troubled organ transplant system. For more than two hours, the House Subcommittee on Oversight and Investigations discussed allegations of inefficiency, slowness, negligence and corruption within the groups charged with coordinating transplants across the US. New, stunning claims also came to light.
It’s been a year since private non-profit organization United Network for Organ Sharing lost its job as sole manager of the Organ Procurement and Transplantation Network (OPTN) – a role UNOS had held since 1986. Now the Health Resources and Services Administration (HRSA) is looking for other contractors to manage parts of the massive system that oversees tens of thousands of transplants each year. There are disagreements about who should be involved in reviewing the OPTN and how it should be managed that process slowed downPolitico reports.
News itemsCongressional and, more recently, federal investigations have clearly highlighted the problems with the current transplant system. Many organs are not collected or thrown away, while people on the waiting list die every day. Last month, Vox reported that nearly 7,000 donated pancreases missing. Transportation problems result in canceled transplants and bad organs. Patients waiting for a life-saving transplant often don’t know where they stand or what their options are.
These long-simmering issues and others surfaced Wednesday, and with little resistance, with neither HRSA Administrator Carole Johnson nor OTPN President Richard Formica showing up.
Here are five takeaways from the hearing:
Conflicts of interest are a major concern
One theme emerged and reemerged during the hearing: dissatisfaction with the board of directors responsible for the federal transplant network. In the past, members of the UNOS board have also served on the OPTN board, intended to oversee UNOS, creating a conflict of interest. As part of the reform, HRSA an independent body was established this summer to serve on OPTN’s board, and hired the American Institutes for Research to organize the election.
However, when surgeon Robert Cannon referred to the board, he put “independent” in quotes. Cannon, surgical director of liver transplantation at the University of Alabama at Birmingham, worries about how separated the new group is from the old UNOS guard. Both he and Seth Karp, surgeon-in-chief at Vanderbilt University Medical Center, called for board members to be appointed.
Karp previously served on the boards of UNOS and the OPTN, as well as on the panel that investigated patient safety complaints. “I know what’s going on inside,” he told lawmakers. The OPTN board is still full of people who “just a few months ago” were on the UNOS board, or were otherwise involved with the contractor. Karp said he was aware of “self-interest, incompetence” and unsavory tactics: suppressing data showing how many organs were discarded, taking credit for increased donations that were actually caused by technological advances and opioid-related deaths, and downplaying a breach of patient data which exposed approximately 1 million medical records, some of which contained sensitive information and Social Security numbers.
Karp, along with Cannon and the other witnesses, called for the new OPTN board members to be replaced.
Allegations of misconduct abound
Greg Segal founded the nonprofit organization Organize for patients because of his family. Several members, who share a rare genetic condition that causes heart failure, have required heart transplants. Segal’s younger siblings may soon need new hearts, too. While calling for accountability in the system, he was “overwhelmed by whistleblower allegations” against the OPTN and regional organ procurement organizations, he said Wednesday. The claims range from kickback schemes – some for example in Alabamaproven and continued – to discrimination, favoritism and bribery during patient safety investigations. Segal became so inundated with disturbing information, he said, that he began referring whistleblowers to Congress or law enforcement.
Terrifying allegations caught the attention of committee members Wednesday morning. Morgan Griffith, committee chairman from Virginia, said he had heard of potential donors who were thought to be brain dead but woke up on the way to the operating room to have their organs removed. Segal said such a case took place in Kentucky and is arrested by the attorney general.
Cannon said he had a similar experience firsthand (not at his current facility). In the middle of an organ removal operation, an anesthetist said the patient had been breathing – an action that would contradict a declaration of brain death. When Cannon consulted a senior official about this, he was told to continue with the procedure. “Which of course would have been murder,” he told lawmakers. They closed the patient again and finished the operation.
Committee member Michael Burgess of Texas called the allegations “some of the most serious” he had heard in his many years at Oversight and Investigations. He then turned his sights to HRSA, the $15.4 billion agency within the Department of Health and Human Services.
HRSA could strengthen oversight
“HRSA does not appear to be doing the oversight that the agency should be doing,” Burgess told the witnesses. They largely agreed. Jesse Roach, senior vice president of government relations at the National Kidney Foundation, said Congress should put pressure on the organization to hold OPTN and its local counterparts accountable for organ mismanagement and waste.
There should also be a new, robust system for handling whistleblower complaints, and open access to data on the transplant system, he said. (Segal said OPTN leaders have personally retaliated against him for his work, and knows of whistleblowers who are too afraid to come forward because of the nonprofit’s track record of handling complaints.)
Currently, HRSA relies on the OPTN to collect and share information on how centers and regions are performing. That, too, needs to change, the witnesses told lawmakers.
But above all, they urged the agency to take immediate action regarding the appointed board for OPTN. That would allow board members to be vetted in advance and ensure they are truly independent from the influences of UNOS or other contractors.
Medicare has allowed wide latitude
Organ procurement organizations — of which there are 56 in the U.S. — are covered by an old Medicare program that allows them to be reimbursed for all costs, even those seemingly unrelated to patient care, Segal said. This scheme has led to Medicare fraud in the past and could encourage the misspending of crucial Medicare dollars in the transplant system.
Several audits by the Office of the Inspector General have shown this OPOs did not report adequately overhead, administrative and general costs, or billed for costs that were not allowable under Medicare rules. News reports have also exposed OPO leaders making luxury trips and buying season tickets to professional sports with money intended for finding and allocating organs to people in need of transplants.
Access will not be easily improved
Even if all available organs were carefully managed and used smartly, some patients would still end up on a waiting list, Segal said. Kidney transplants in particular are in high demand. About 90,000 people are on that waiting list.
And then there are the issues of racial equity and discrimination that can even get in the way of patients ending up on the waitlist. Black and Hispanic people are less likely than their white counterparts waiting list and to get a transplantsome studies suggest.
Federal officials don’t have a good understanding of what patients go through before they’re approved for the waitlist — the many hoops that can disqualify someone based on less-than-optimal income, social support or mental health. A 2019 report from the National Council on Disability was found disabled Americans were denied entry to necessary transplants – or even medical evaluations for transplantation – based on written and unwritten policies.
People in rural areas also face access problems. And children who often need transplants difficulty obtaining thempartly because their smaller body size limits the potential collection of organs.
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