The last place anybody wants to hear about gross mismanagement and incompetence is in the business of saving lives. That’s precisely and unfortunately what the Finance Committee meets to discuss today.
This morning’s hearing is an update on an investigation Senator Grassley and I, along with Senator Cardin and Senator Young, have been conducting for more than two and a half years. It examines the network of dozens of organizations that manage organ transplants, and particularly the group that oversees and coordinates them, the United Network for Organ Sharing, or UNOS. We have reviewed 100,000 UNOS documents totaling more than a half million pages.
Before I get to specific findings, I want to frame what we’ve learned as simply as possible. Far too many Americans are dying needlessly because UNOS and many of the transplant organizations it oversees are failing and seem uninterested in improving.
These issues involve an alphabet soup of acronyms and organizations, so I’ll start out with a bit of background. A 1984 law created the first computerized system to match sick patients with the organs they needed. It was named the Organ Procurement and Transplantation Network. Somebody needed to manage that system for the entire country, so the government sought to contract an organization to run it. UNOS was the only bidder for that first contract in 1986. The contract has come up for bid seven other times. UNOS has won all seven.
Today the network UNOS oversees is made up of nearly 400 members, including 252 transplant centers and 57 regional organizations known as organ procurement organizations, or OPOs. Each OPO has a defined geographic service area. A family sitting in a hospital room thinking about donating a loved-one’s organ doesn’t have a choice of OPOs.
Those are the important terms to remember. When a kidney donated in Corvallis needs to get to a patient in Portland, that’s where an OPO comes in. UNOS oversees the OPOs.
As our investigation shows, UNOS does it very poorly.
Serious errors in the procurement and transplant system are shockingly common. Between 2010 and 2020, more than 1,100 complaints were filed by patients and families, staff, transplant centers, and others. The nature of those complaints runs the gamut. For example, in a number of cases OPOs had failed to complete critical, mandatory tests for things like blood types, disease and infection.
Our investigation found one patient died after being transplanted with lungs that a South Carolina OPO marked with the wrong blood type. Similar blood type errors happened elsewhere, and patients developed serious illness. Some had to have organs removed after transplant.
Another patient was told he would likely die within 3 years after an OPO in Ohio supplied him with a heart from a donor who had died of a malignant brain tumor. UNOS did not pursue any disciplinary action.
In a case from Florida, another patient contracted cancer from transplanted organs, and the OPO sat on the evidence for months.
In total, our investigation found that between 2008 and 2015, 249 transplant recipients developed a disease from transplanted organs. More than a quarter of them died.
Delivering organs has been another source of life-threatening errors. We found 53 such complaints between 2010 and 2020, as well as evidence that those were just the tip of the iceberg. In some cases, couriers missed a flight. In others, the organs were abandoned at airports. Some organs were never picked up. Many of these failures resulted in organs being discarded.
It’s reasonable to assume that many more errors are going unreported. Why? Because filing official complaints with UNOS appears to accomplish zero productive oversight or reform. Organ transplant professionals repeatedly told the Finance Committee that the UNOS complaint process was a “black hole.” Complaints went in, UNOS went quiet.
In interviews with the committee, UNOS leaders have dragged their feet, dodged tough questions and shifted responsibility onto others. Investigations and disciplinary measures rarely amount to more than a slap on the wrist. Only one time — just once — has UNOS recommended that an OPO lose certification.
The bottom line is that the failures we’ve uncovered cost lives. Thousands of organs donated each year wind up discarded, including one in four kidneys. Yet according to federal data, roughly 6,000 Americans die every year while waiting for an organ transplant.
This kind of mismanagement has a disproportionate impact on minority Americans. African Americans, for example, have a greater need for kidney transplants than those from other demographic groups.
The Centers for Medicare and Medicaid Services recently issued new standards for OPO performance, and more than a third of OPOs are failing to meet them. Fixing what’s broken could substantially increase the supply of lifesaving organs available for transplant.
Finally, another area of the committee’s investigation has examined the I-T used by UNOS to run the transplant network. This system is outdated, mismanaged and insecure. Using such decrepit tech to run the transplant network puts lives in danger and puts sensitive data at risk, and there is no apparent solution in sight. In a report issued last year titled “Lives Are At Stake,” the U.S. Digital Service flatly concluded that UNOS did not have the technical capability to modernize the system.
I’ll close on this. If you looked at the staff at UNOS and many of the nation’s OPOs, I’d wager the vast majority are hardworking people doing their best to save lives. The glaring issues uncovered in our investigation stem from leadership failures.
Our investigation is ongoing. It’s clear this system needs reform badly. We’re going to continue digging into issues at UNOS and the OPOs, as well as the policies that need changing at the federal level. This is not a partisan subject. Everybody wants this system to work with as few errors as possible. Senators Grassley, Cardin and Young and I are going to keep at it.
A web version of this release is here.
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