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Patients die every day waiting for organ transplants. The problem goes beyond donations

SCOTT SIMON, HOST:

A major hospital brought its kidney and liver transplant program to a halt this week. Memorial Hermann-Texas Medical Center said its waiting lists had been manipulated, so some patients were effectively pushed out of line. The federal government says it's investigating, but even without suspected misconduct, 17 patients die each day while on similar waiting lists. And although it can mean life or death for patients, a senior fellow at the Federation of American Scientists says that too many eligible organs just wind up in the trash. Jennifer Erickson also worked in the Obama administration and joins us in our studios. Thanks so much for being with us.

JENNIFER ERICKSON: Thanks for having me.

SIMON: These are organs that could save lives. How do they wind up in the trash?

ERICKSON: Oh, gosh. Well, they don't get there in time. There was a surgeon who testified before the Senate about receiving a kidney in a box with tire marks on it. Organs can be recovered by people with no clinical experience. So someone might recover an organ from a generous organ donor but make a mistake in how they cut it out. I mean, Scott, you could be recovering organs tomorrow. You're a great radio interviewer, but I'm sure you would agree that we should actually have clinicians doing that work. And that isn't actually what the federal government requires.

SIMON: Congress created the organ donation system in the 1980s. How does that affect what we're seeing with organs being donated and then winding up in the trash?

ERICKSON: Well, the central flaw of how the system was set up is that it's run by a network of monopoly contractors. Every single monopoly that got a contract from the federal government in the 1980s is still there 40 years later, and has never, not once, faced competition or accountability - not for Medicare fraud, not for deadly patient safety lapses, not for their organs that they've recovered ending up in the trash. It's just year after year, the taxpayers send them a check, and they don't have to be accountable for the job they actually do.

SIMON: You say monopoly, but as you note, it's government funded, so technically, it's a centralized system.

ERICKSON: So there's 55 local monopolies. Those are called organ procurement organizations. They are the folks that are supposed to turn up at a hospital every potential time to honor a potential organ donation wish. But too often, they don't show up. And then there's a national contractor, one to look out for all the others, and that is the United Network for Organ Sharing, or UNOS. And they have just been an abject failure for the last 40 years.

SIMON: Don't all these companies have - forgive me - a financial incentive to talk to people and to deliver organs?

ERICKSON: They actually don't because organ procurement organizations are one of the last remaining parts of U.S. health care that are funded on a cost-reimbursement basis. They are not funded based on how many organs they recover or on how many organs are successfully transplanted. They're just refunded for whatever they spent. So if they buy private planes, if they have multimillion-dollar CEO salaries, it all just goes on to the payer, which is usually the taxpayer, and it's completely divorced from how they actually serve patients.

SIMON: What needs to be done, in your estimation?

ERICKSON: The Centers for Medicare & Medicaid Services has said that 74% of the nation's organ recovery agencies are failing performance standards, yet none of them has ever lost a contract. The government actually has to stand up for patients. It has to say, if you're one of the 20-odd percent that's doing the job, keep doing it. And if not, replace them immediately 'cause these are lives at stake.

SIMON: I was on a flight this week that was delayed six hours. Probably hundreds of thousands of other people were. For all I know, there was an organ being transplanted, and maybe by the time it actually arrived, it was unusable for one reason or another. I can imagine a contractor saying, look, that was the fault of American Airlines, not us.

ERICKSON: OK. Well, I'll give you a statistic back then. The national monopoly, UNOS, is 15 times more likely to lose or damage an organ in transit than an airline is a suitcase. For organs, it's absolutely objectively worse.

SIMON: What do you hope an organ donation system can ultimately look like, you know, recognizing there will be transportation delays and surgical mistakes and all human factors.

ERICKSON: I hope it's safe. I hope it's equitable. I hope that organ donation wishes are honored, and I think it just goes back to that reality that monopolies don't work. And I'll give you a glimmer of hope here. Last July, Congress voted unanimously to break up the national monopoly contract held by UNOS. So now what we need is the agencies within the Department of Health and Human Services to actually finish the job. They have to remember that, like you said, every day, we have - it's actually more than 17 Americans die waiting. If you take those who've already been removed from the waiting list because they're too sick to transplant, 30 Americans die every day. And it's not because the organs aren't available. It's because the system they've probably never heard of isn't doing its job.

SIMON: Jennifer Erickson, senior fellow at the Federation of American Scientists. Thank you so much for being with us.

ERICKSON: Thank you.

(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.

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Scott Simon is one of America's most admired writers and broadcasters. He is the host of Weekend Edition Saturday and is one of the hosts of NPR's morning news podcast Up First. He has reported from all fifty states, five continents, and ten wars, from El Salvador to Sarajevo to Afghanistan and Iraq. His books have chronicled character and characters, in war and peace, sports and art, tragedy and comedy.