Dozens of people have died and hundreds have been sickened due to mistakes in the U.S. organ transplant system, according to a Senate investigation released this week.
It came after a review by the U.S. Digital Service found the network that matches patients and organs is gravely outdated. That program has been run for more than three decades by one nonprofit: the United Network for Organ Sharing, or UNOS.
Joseph Menn has been reporting on this for The Washington Post. He said the system’s tech problems run deep. The following is an edited transcript of his conversation with Marketplace’s Meghan McCarty Carino.
Joseph Menn: One of them is that it’s not really based in the cloud, as most large government agencies and big companies are these days. So, that hurts computing power, it hurts speed and it means that there can be, like, one or two points of failure. If a main data center goes down because of a flood or electricity interruption, the whole system might stay crashed for hours.
Meghan McCarty Carino: I know there has been a big push to digitize medical records over the last decade or so. I mean, how much of this system relies on automation versus just manual inputs?
Men: Not nearly enough. And everybody agrees with that. In some cases, shipping a single organ to a single recipient has two or three or more times where there has to be manual data entry. And every time you have manual data entry, there’s a possibility of mistakes getting made.
McCarty Carino: Yeah. You quoted a doctor in your piece, who said something like, in this day and age, we’re used to tracking our food deliveries minute by minute on these apps. One would expect with lifesaving organs, there would be, perhaps, something at least as good as that. But that’s not the case?
Men: It’s very sort of cobbled together. Some of the organ procurement operators, which are these regional nonprofits that collect the organs, have one system for inserting tags that they can track. But perhaps the hospital that’s receiving it doesn’t have the same version. UNOS makes another kind of tracking app. So sometimes they’re all on the same page. And sometimes they’re not.
McCarty Carino: What are the stakes here?
Men: Well, unfortunately, it’s life and death — 40,000 people get transplants every year, many people die every day on the waiting lists for organs. And so, we’re not talking about not enough people on the help line at the airline to change your reservation, we’re talking about you can lose your chance at an organ, and people die. One doctor told me the story of a patient in the San Diego hospital who desperately needed a liver, and she was unable to coordinate the plane travel that would have taken the doctor to pick up the organ and get back in time, and the patient died.
McCarty Carino: So what kind of federal oversight is there of UNOS’ system and operations?
Men: The Health and Human Services Department, they have this contract and the contract comes up for renewal every so often. And they could try to change the terms and demand better access. But there’s this really weird standoff because the initial law says that it’s got to be a nonprofit that runs it. And it’s got to have this quality and that quality. And UNOS is private. And it says it owns the code, and it’s a trade secret. And if the federal government wants to give it to somebody else, contract to somebody else that has maybe more technological expertise, then it’s going to have to buy the code from UNOS for $55 million. They still could bid it out to others, but the problem is the way they define the contract. In the past, it said, “You must have had experience running an organ transplant network.” Well, that kind of narrows the field down to UNOS and maybe people in a couple of other countries. So a lot of the people who would have been interested in bidding in the past have dropped out.
McCarty Carino: So how might this system be reformed? I know Congress is reviewing it now. What can lawmakers actually do here?
Men: Congress is one of the few places where this can actually get fixed. They can actually rewrite that 1986 law and change it so it doesn’t have to be a nonprofit with, you know, certain years of experience or whatever. They can open it up for regular bidding. And so, there’s never any guarantee that anything gets through Congress, but this is pretty nonpartisan and everybody agrees it’s messed up. So with the hearing and the U.S. Digital Service report, there’s now actually a shot at momentum that could force Congress to do something.
Menn’s full story, which he co-reported for The Washington Post, cites a Senate Finance Committee memo to the Department of Homeland Security.
It said committee members had “no confidence” in the security of the organ transplant network and asked the White House to take immediate action to protect it from cyberattack.
The Post has more coverage from Wednesday’s Senate Finance Committee hearing, where the CEO of UNOS, Brian Shepard, disputed allegations that the system is outdated and vulnerable — saying it repels cyberattacks every day.
UNOS has a full statement on the hearing.
Menn reported that government officials say they’ve never seen the full code behind UNOS’ system, which makes it difficult for officials to know just how secure it is.
At the hearing, senators again asked why there’s no tracking system for organs in transit, like there is for pretty much everything else these days.
UNOS’ CEO said it has developed one, though it’s in limited use.
A Kaiser Health News investigation found that between 2014 and 2019, more than 150 organs couldn’t be transplanted, and hundreds more nearly couldn’t, because so many were lost or delayed in transit.