Dozens of Americans die daily waiting for an organ transplant. Why do we let this happen?

In late December, my friend Tonya Ingram – a brilliant poet, surfer, advocate, cat auntie and "Price Is Right" contestant – died waiting for a kidney transplant. She was 31.

Before she died, she used her voice to help call for the breakup of the monopoly in charge of the U.S. organ donation system – because its failures are "killing patients."

Two years ago, my father died of organ failure as a result of chemical exposure from his military service in Vietnam. So Tonya’s message resonated with me deeply, and I have become more committed than ever to what needs to happen to help patients waiting for transplants: We must break up the national organ monopoly.

More than 100,000 Americans are on the waitlist for an organ transplant

The stakes are literally life and death. More than 100,000 men, women and children in America are on the waitlist for an organ transplant.

Over 30 of them die every day – disproportionately patients of color. Here’s the awful secret: Most of this death is unnecessary.

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You can be a living donor:I had end stage kidney failure at age 32. A kidney transplant saved my life.

In 1986, the Department of Health and Human Services (HHS) awarded a contract to the United Network for Organ Sharing (UNOS) to manage the U.S. organ donation system. 

Coasting on goodwill from the American public and taxpayer-funded coffers, by 1999, Forbes labeled UNOS a “cartel,” calling it “the federal monopoly that's chilling the supply of transplantable organs and letting Americans who need them die needlessly.”

More than two decades later, there has still been no accountability for UNOS and no pressure from the federal government to perform.

The result, according to an HHS-funded study, is that we are only recovering organs from as few as 1 in 5 potential donors.

Last August, the Senate Finance Committee, two years into an ongoing bipartisan investigation on UNOS, rendered a damning conclusion: “From the top down, the U.S. transplant network is not working, putting Americans’ lives at risk.” The bipartisan report called out UNOS for “failing to provide adequate oversight … resulting in fewer organs available for transplant (and) risks to patient safety.”

At a time when Republicans and Democrats rarely agree, senators have come to a consensus: UNOS’ failures cost lives. Sen. Chuck Grassley, R-Iowa, said it plainly: “Thousands of organs go to waste each year resulting in lives lost and billions of dollars wasted,” noting that the “system is even worse for people of color and rural residents.” Sen. Elizabeth Warren, D-Mass., agreed: “This isn't oversight; this is sitting on your hands while people die.”

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Treat the organ waitlist like what it is: A preventable, fixable crisis

What, exactly, in UNOS' performance earned all of this ire? The list is long and breathtaking.

Investigative reporting by the Los Angeles Times found that the United Network for Organ Sharing “fails to detect or decisively fix problems … even when patients are dying at excessive rates (and) routinely keeps findings of its investigations secret, leaving patients and their families unaware of the potential risks.”

As the Senate Finance Committee investigation found, such “problems” are shocking, including: criminal kickback schemes, patient deaths resulting from basic errors, racially biased care provision and "improper use of Medicare funds." 

Flaws of the United Network for Organ Sharing are almost innumerable, but it’s the organization's culture that is most illuminating. Based on its public messaging, you might conclude that its leaders are earnestly doing their best but sometimes mistakes happen.

Their internal emails reveal otherwise.

For example, the Senate committee investigation found executives in the system joking that their deeply flawed process for protecting patient safety is “like putting your kids’ artwork up at home. You value it because of how it was created rather than whether it’s well done.”

In another example, emails unsealed by a federal judge revealed a UNOS board member disparaging patients of color and patients living in rural areas as “dumb f---” and dismissing concerns that one of its policies would harm those patients.

And rather than address these problems, UNOS has used taxpayer dollars to, according to the Project On Government Oversight, buy lobbyists and invest in misinformation campaigns, and, as Sen. Bill Cassidy, R-La., noted, “stonewalling and by all accounts hiding information” from Congress.

Along the same lines, whistleblowers have testified before Congress regarding UNOS’ fierce retaliation against anyone who speaks out, with surgeons fearing that UNOS will retaliate against their patients if they dare to criticize it for even the most glaring abuses.

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So, where is the government action?

The federal government needs to treat the organ waitlist like what it is: a preventable, fixable crisis. There needs to be urgency, not the acceptance of the predictable deaths every day of our neighbors.

It may be difficult for our own officials to fathom that an organization they have entrusted with something so important – organ donation – can exhibit such a cavalier lack of care, with such transparently self-serving regard. But as one whistleblower testified before Congress, the government gives its organ donation contractors “blank checks and participation trophies as patients are given death sentences.” 

In 2021, President Joe Biden issued an executive order about the importance of tackling monopolies. Americans have seen the problems of this extractive, rent-seeking model in everything from utilities to concert tickets. The government needs to focus that energy on a monopoly whose failure is killing Americans.

If the president listens to his former Senate colleagues and breaks up the national organ monopoly, then he’ll have delivered a win for commonsense bipartisanship, a win for equity and, most important, a win for some of the most vulnerable patients in the country.

Jennifer Erickson, a senior fellow at the Federation of American Scientists, served in the White House Office of Science and Technology Policy under President Barack Obama, working on organ donation policy.