Posted on November 23rd, 2022.

There are more than 100,000 people in the United States waiting for an organ transplant, according to the United Network for Organ Sharing, known as UNOS.

“I was born Type 1 diabetic,” said Patrick McGlone, who received a dual kidney-pancreas transplant in June 2021. “There was always the word transplant thrown around. But I never thought it’d be a possibility.”

It can be a long wait because of the organ shortage. Only a little more than 50% of people waiting for an organ will receive one within five years, according to UNOS.More than 100,000 people in the United States are waiting for an organ transplant. But only slightly more than half of them are expected to receive an organ within five years.  

Now, a congressional investigation is raising serious questions about whether non-profit groups meant to secure organs for transplants from deceased donors are doing enough. 

The groups, called organ procurement organizations, or OPOs, are "failing" to secure many organs that could be recovered, according to a House subcommittee investigating the organ donation and transplant system.

"Seventeen to 20 people a day die on the wait list because they can't get organs, and the OPOs are just not recovering enough organs and making sure they're getting into people who need them," said Rep. Raja Krishnamoorthi, who chairs the House subcommittee.

In August, the Senate Committee on Finance said a 2.5-year investigation found "from the top down, the U.S. transplant network is not working, putting Americans' lives at risk."   

And in a letter sent to OPOs on Thursday, the House subcommittee raised questions about whether data provided by OPOs may be "inaccurate and incomplete."

"If you don't have proper data, then you don't know what organs exist and are usable to go into people who need them," said Krishnamoorthi.

Several OPOs told CBS News their data is "accurate," and they're committed to saving lives.  

The United Network for Organ Sharing, UNOS, said its "systems are audited annually." 

"The data clearly demonstrates that year over year our transplant system continues to be more and more successful," UNOS' Dr. Matt Cooper told CBS News in May, when he was board president.

But not everyone in the system agrees. 

Matt Wadsworth, who heads Life Connection, an OPO in Ohio, said he believes many OPOs nationwide are failing. 

He became emotional during his interview with CBS News, breaking down in tears and leaving for a moment to compose himself.

"There's people dying," he said.   

In Wadsworth's first two years at his organization, they doubled the number of organ donors in his region, which meant many more lives saved. He told members of Congress at a House subcommittee's hearing in 2021 that other OPOs should be doing better, too, and that OPOs are "grossly inefficient and unaccountable." 

They're unaccountable, he said, because before this year, when the government changed the way OPOs are evaluated, some OPOs were able to make their numbers look better than they actually were.

In manipulating their data, OPOs made it look like "they were going after every opportunity every time, they were converting every possible patient to be a successful organ donor."

"And that's just not the truth," he said. "And they're the same bad players. If you look at the data, it's the same people low performing year after year."

The Association of Organ Procurement Organizations said its members are doing a good job and that OPOs have increased the number of deceased organ donors by 35% in the last five years. But it agreed "improvements are necessary" to advance care for patients.

One of those patients is LaQuayia Goldring, who has been waiting seven years for a kidney transplant to keep her alive.

For four hours a day, five days a week, she sits hooked up to a machine for home dialysis – the only way to clean her blood while she waits.

"I only have one shot at a transplant, and until I get that call, my life is dependent upon a machine," she said. "A lot of dialysis patients are sitting around like me just wondering, 'When will we get the call?'" 

"I feel like the longer that I wait, the closer I am to death," she said

UNOS is a private, nonprofit organization that compiles all of the clinical information for candidates in the U.S. in need of a transplant into what it calls its computer waiting list. It has handled the government contract for managing the organ-donation process since 1986 and coordinates with all of the other entities involved.

The organ-donation system in the U.S. is designed to save as many lives as possible without wasting any organs, but there are inequalities within the system that do raise questions of fairness.

People of color, people of lower socioeconomic status and women receive transplants at a lower rate than the general population and are also more likely to wait longer for an organ than patients with similar medical issues.

“The biggest equity challenge in transplant is the same as it is for everywhere in American health care: It’s getting access to the hospital in the first place,” said Brian Shepard, a former CEO of UNOS. “Transplant is not immune from any of those inequities.”

“I think a lot of people think about organ transplants and they think, oh, that’s a problem for older folks,” said Arthur Caplan, director of the division of medical ethics at the NYU Grossman School of Medicine. “If you increase the number of transplants that we do, you can have a much more productive workforce. It saves money. ... So it’s a pocketbook issue for all of us.”

“It’s weird to say the surgery saved me money,” said McGlone. “Diabetes care, between the supplies and the constant visits and the lab work and all the things you need to do. There’s a lot of [out-of-pocket costs] even with good insurance.”

The industry recognizes the importance of finding alternatives to using organs from deceased human donors to address the national shortage. One method is to encourage kidney donations from living donors.

“People have different opinions on this, but it was honestly the easiest process for me and everybody,” said Katharine Manor, who donated her kidney on behalf of her mentor. “It was just really easy for me.”

“You might think we could have a campaign and encourage more people to do this, and you can,” said Caplan. “But in reality, most of us sitting around are not going to give up a kidney to somebody we don’t know. It’s a big deal.”

Currently, there is research being done into using animal organs, such as pigs, as well as building mechanical organs to try to make up for the scarcity.

“Even though we’re all fascinated by transplant, the ultimate goal is to get rid of it,” Caplan said. “What you want to do is either repair using cell engineering or artificial organs that can just simply substitute for the natural organs that failed.”

Source: CNBC.