Organ collection agencies told to improve performance or face tighter rules

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Andre Chung for The Washington Post

Rep. Katie Porter (D-Calif.) asserted during a hearing on May 4 that an organ was not collected because an organ procurement organization’s chief executive was using one of the group’s jets for a vacation trip.

Lawmakers on Tuesday grilled leaders of the groups that collect organs for transplant, warning that they might seek tighter regulations if the organizations do not increase the number of kidneys, hearts, lungs and other organs they procure and reduce racial disparities among donors and recipients.

Before a congressional hearing on the industry even began, six of the 57 groups — known as organ procurement organizations, or OPOs — announced that they were withdrawing from their own trade group, the Association of Organ Procurement Organizations. In a news release, they cited AOPO’s “lobbying against lifesaving reforms” being implemented by the federal government, and said they wanted to provide clearer information on waste and mismanagement in their ranks.

That effort began almost immediately, when the head of one of the breakaway OPOs testified before the House Oversight and Reform Committee’s subcommittee on economic and consumer policy. Matthew Wadsworth, the chief executive of Life Connection of Ohio, told lawmakers: “The OPO industry is broken, which is to say all too often it does not serve patients.” He described organizations that face no consequences “for letting patients die” even as they reap huge financial gains.

“OPOs are given blank checks and participation trophies while patients die,” Wadsworth said.

Each nonprofit OPO holds a contract with the federal government that gives it a monopoly over a geographic region of the country. The organizations are responsible for approaching the families of people on life support to secure kidneys, hearts, lungs, pancreases and other body parts and for coordinating the transfer of organs to hospitals, where they are implanted into recipients, who are often desperately ill.

Some OPOs perform quite well, but others have failed for years to secure even a fraction of the available organs in their regions. Partly as a result of their inefficiency, 107,000 people are on waiting lists for organs, the vast majority of them seeking kidneys, and 33 people die each day while waiting.

[Lives lost, organs wasted]

Despite this performance, and years of complaints from transplant surgeons and activists, no OPO has ever lost its contract with the government. Until last year, the government allowed OPOs to collect, calculate and report their own data, leading to furious disputes over whether some of the groups were manipulating the numbers to cover up poor performance.

In November, the Trump administration finalized reforms to evaluate the OPOs against objective measures and, the government hopes, prompt them to collect as many as 5,600 additional organs each year. In 2020, 39,035 organs from deceased donors were transplanted, according to the United Network for Organ Sharing, another nonprofit organization that coordinates the system. Kidneys and liver tissue also can be provided by live donors.

The Biden administration, after initially holding up the new rules, is proceeding with the changes. But they do not begin to take effect before 2022, and no OPO could lose a contract before 2026. Tuesday’s hearing was called to discuss whether action should occur sooner.

Joseph Ferreira, the head of the Nevada OPO and president of AOPO, told lawmakers that the organization has recently committed to a campaign that will increase organ procurement to 50,000 annually.

“We are proud of what the OPO community has accomplished,” Ferreira said. “At the same time, we can and will do better.”

But under questioning from the subcommittee’s chairman, Rep. Raja Krishnamoorthi (D-Ill.), it became clear that the group also had substantially increased its lobbying against the reforms approved last year.

[Behind the failure of the first U.S. uterus transplant]

Krishnamoorthi cited an April 5 story published by the Project on Government Oversight in which anonymous sources within the OPO industry were quoted as saying about the congressman: “We need to share only the minimum information required, and he’ll eventually go away.”

An obviously irritated Krishnamoorthi ended the hearing by telling the AOPO representatives: “I’m not going away, and we are not going away. The issues here are about life and death. And because of that you can expect more and more inquiries from us the more you obstruct our investigation.”

In one of the most striking moments of the hearing, Rep. Katie Porter (D-Calif.) asserted that an organ had not been collected because an OPO’s chief executive was using one of the organization’s jets for a vacation trip, making the aircraft unavailable to pick up an organ.

“That literally happened. An OPO CEO went literally on vacation. This is not a hypothetical story with the jet,” Porter told AOPO’s chief executive, Steve Miller, who also attended the online hearing. “They literally jetted off to vacation and left donors who were unable to honor others with the gift of life, and left patients to die because they weren’t pursuing … every possible donor.”

Miller responded that he was not aware of that allegation. Jordan Wong, a spokesman for Porter, said she stood by her remarks at the hearing.

Several members of Congress also cited inequities between Whites and people of color in the transplant system. Data show that Black Americans are substantially more likely to suffer kidney diseases, but Whites are more likely to be referred for transplants, and OPO staffers are more likely to ask White families for permission to donate relatives’ organs.

“I’ve watched this system fail dying patients,” said Rep. Cori Bush (D-Mo.), a former transplant nurse. “Time and time again I’ve watched this.

“Each OPO is a monopoly. If the OPO fails at securing an organ, no one else can do this work.”

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