A Senate investigation released this week found dozens of people dead and hundreds sickened by mistakes in the US transplant system.
It comes after a review by the US Digital Service found that the patient and organ matching network was severely outdated. That program has been run for more than three decades by a nonprofit organization: United Organ Sharing, or UNOS.
Joseph Menn has been reporting on this issue for the Washington Post. He said the system’s technological problems are becoming entrenched. The following is an edited transcript of a conversation with The Marketplace’s Meghan McCarty Caryno.
Joseph Men: One of these is that most large government agencies and large companies are not cloud-based these days. So, that affects computing power, affects speed and that means there may be one or two points of failure. If the main data center goes down due to a flood or power outage, the system can be down for hours.
Meghan McCarty Carino: I know that in the last decade or so there has been a big push to digitize medical records. I mean, how much of this system is based on automation and manual inputs?
Men: not enough. And everyone agrees on that. In some cases, sending a single entity to a recipient has two or three or more times where there is manual data entry. And every time you enter data manually, there is a chance that mistakes will be made.
McCarthy Carino: yes. In this day and age, we are used to tracking our food supply minute by minute with these apps, he quoted a doctor. One expects with rescue bodies, perhaps, at least there will be something as good as that. But isn’t that so?
Men: It is very tight together. Some organ procurement operators have a tracking system for these regional non-profit organizations that collect organs. But maybe the receiving hospital doesn’t have the same version. UNOS makes another kind of tracking app. So sometimes everyone is on the same page. And sometimes they aren’t.
McCarthy Carino: What is the stake here?
Men: Well, unfortunately, it’s life and death – 40,000 people receive transplants every year, and more people die every day on the organ waiting list. And so, we’re not talking about not having enough people on the airline’s helpline to reposition the airline, we’re talking about the possibility that you’ll lose your chance on an organ and people will die. A doctor told me that a patient at a hospital in San Diego was in desperate need of a liver, and she couldn’t coordinate a plane ride to take the doctor to pick up the organ and return in time, and the patient died. .
McCarthy Carino: So what federal oversight is there of the UNOS system and operations?
Men: The Department of Health and Human Services, they have this contract and the contract comes up for renewal every now and then. And you can try to change the rules and request better access. But there’s this really weird conflict because the first rule says it has to be a non-profit that runs it. And this should have quality and quality. And UNOS is private. And he says he owns the code and it’s a trade secret. And if the federal government wants to give it to someone else, maybe a contract to someone more technologically savvy, then it has to buy the code from UNOS for $55 million. You can still bid on others, but the problem is how you define the contract. Earlier, he says, “he must have had experience running an organ transplant network.” Well, that kind of narrows the field down to UNOS and maybe people in other countries. So many people who were interested in bidding in the past dropped out.
McCarthy Carino: So how can this system be fixed? I know Congress is reviewing it now. What can lawmakers really do here?
Men: Congress is one of the few places where this can be properly addressed. They could rewrite that 1986 law and change it so that nonprofits, you know, have certain years of experience or something. You can open it up for formal bidding. And so, there’s no guarantee that anything will come through Congress. So with the hearings and the US Digital Service report, there’s now a shot at forcing Congress to do something.
Maine’s full story, co-reported by The Washington Post, cited a Senate Finance Committee memo to the Department of Homeland Security.
Committee members said they had no confidence in the security of the transplant network and called on the White House to take immediate action to protect it from cyberattacks.
The Post has more coverage at a Senate Finance Committee hearing Wednesday, where UNOS CEO Brian Shepard disputed allegations that the system is outdated and vulnerable — it defends against cyberattacks every day.
UNOS has a full statement on the hearing.
Maine reports that government officials have never seen the full code behind the UNOS system, making it difficult for officials to know how secure it is.
At the hearing, senators asked why there was no tracking system for organs in transit, as everything currently exists.
For his part, the UNOS chief executive said he had prepared one, although it would be of limited use.
Between 2014 and 2019, a Kaiser Health News study found that more than 150 organs failed to be transplanted, and hundreds more were lost or delayed in transit.
