How reforming our organ donation system can save Black lives

OPINION: Until inequities in the organ transplant system are addressed, too many Americans will die unnecessarily waiting for an organ transplant that never comes, and our community will continue to suffer.

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Editor’s note: The following article is an op-ed, and the views expressed are the author’s own. Read more opinions on theGrio.

Thirty-three people — disproportionately people of color — die each day in the United States because of the failing monopolies that run our organ donation and transplant system. In fact, the system is so inequitable that Senator Cory Booker, D-N.J., and other leaders of the Congressional Black Caucus recently urged the Biden administration to make reforms as an “urgent health equity issue.”

There are 105,000 people on the U.S. transplant waiting list. The barrier to helping most of these patients isn’t a supply issue; 90% of Americans already support organ donation (and most are registered donors). The problem is that the system is run by government contractors who operate with little oversight, contributing to 28,000 organs going untransplanted each year.

Fortunately, these problems have finally begun to get the attention they so urgently need. The Senate Finance Committee is currently almost three years into an investigation into system abuses, concluding that “From the top down, the U.S. transplant network is not working, putting Americans’ lives at risk.”

The bipartisan report — and the corresponding hearing last fall — highlighted breathtaking failures at the United Network for Organ Sharing (UNOS), the government monopoly contractor that has been responsible for managing organ transplants and donations for 40 years. UNOS oversees a network of 56 regional government contractors called organ procurement organizations (OPOs) that are tasked with showing up at the hospital in the event of a possible donation and working with the donor’s next of kin to coordinate a safe and respectful recovery of the organs.

But OPOs are woefully ineffective and have also been shown to deprioritize care for patients of color. In fact, the House Oversight Committee is currently running a parallel investigation into OPO’s “shocking mismanagement” and racially biased care provision.

The problem certainly isn’t a lack of resources. OPOs spend about $3 billion every year, much of it taxpayers’ money. As one OPO executive told the House Oversight Committee, OPOs are “given blank checks and participation trophies while patients are given death sentences.”

The abuses are both fatal and seemingly endless. For example, the South Carolina OPO misread a donor’s blood type, a mistake that ultimately killed the transplant recipient — and it turned out that the OPO’s chief medical officer was not even licensed to practice medicine in South Carolina. Kidneys are regularly thrown in the trash, including because of the gross failings of UNO’s technology and logistics system. OPO executives in Alabama even ran a criminal kickback scheme for which a whistleblower was threatened with being “cremated alive” if they exposed the fraud.

Audits have detailed rampant Medicare fraud, conflicts of interest, racial discrimination and patient harm, and OPO executives have repeatedly colluded to obstruct investigations into abuse. Investigative reports have found UNOS “often fails to detect or decisively fix problems at derelict hospitals — even when patients are dying at excessive rates” and otherwise generally acts like a “cartel.” This is not the feel-good industry that it spends millions of marketing dollars holding itself out to be, and it’s one that operates without any accountability; despite decades of abject failure, not one of these contractors has ever lost a lucrative taxpayer-funded contract.

At least some of the harms appear to result from an active animus for patients (or, in the words of Congresswoman Katie Porter, D-Calif., “patient abuse”). Internal emails unsealed by a federal judge revealed UNOS decision-makers justified harm to people of color living in disadvantaged areas because they are “dumb f–k[s] for living there.” In response, UNOS is firing up its lobbying and public relations and is taking credit for the recent increases in organ donation, which actually are driven by increases in opioid deaths, gun deaths and car accidents, not system improvements.

How’s that for macabre?

It’s beyond clear that reform is needed. The last few years have been replete with investigative reporting, Congressional hearings and shocking whistleblower revelations, but nothing will change until the Biden administration takes meaningful steps to address the central issue: ending UNOS’ monopoly over the system and replacing failing OPOs.

Until then, too many Americans will die unnecessarily waiting for an organ transplant that never comes, and our community will continue to suffer.

Ebony Hilton, M.D. is co-founder and medical director of GOODSTOCK Consulting.

Bakari Sellers is an attorney, a former Democratic member of the South Carolina House of Representatives, a CNN commentator, and father to a daughter who, at 4 months old, received an urgent, lifesaving liver transplant.

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