By DJ Patil, PhD, Greg Segal, Ebony Hilton, MD & Lachlan Forrow, MD

OPTN and OPOs are mischaracterizing organ donation data to block system reform

One of America's greatest tragedies -- the still-worsening opioid epidemic -- is obscuring another: Abject failures in our national organ donation system. Even worse, opponents of major reforms in our organ donation system are exploiting this tragedy as they attempt to block long-overdue Congressional action.

The magnitude of the opioid crisis shows no signs of peaking. New data from the CDC's National Center for Health Statistics show that deaths from the opioid epidemic soared by 50% from October 2019 to October 2021, some of which reflected second-order effects of the COVID-19 pandemic. Similarly, alcohol-related deaths, according to recent CDC reports, were also up by a shocking 25% in 2020, from an average increase of 3.6% per year from 1999-2019.

What does this have to do with organ donation? Drug overdoses and alcohol-related deaths fall into the subset of deaths that allow for organ donation to occur, so this sharp rise in opioid deaths has driven record-breaking organ donation numbers. That might sound like a silver lining to a very dark cloud, but as is often the case with public health data, the picture is much more complex.

The government contractors in charge of organ donation -- both organ procurement organizations (OPOs), which oversee local organ recovery, and the organ procurement transplantation network (OPTN), which manages the system -- are hiding behind increases in these deaths of despair to deflect criticism from what the House Oversight Committee has characterized as "shocking mismanagement" in organ procurement.

In fact, HHS has deemed the majority of OPOs to be failing key performance metrics, contributing to 33 Americans dying every day for lack of an organ transplant. And the Senate Finance Committee is investigating the United Network for Organ Sharing (UNOS), the OPTN contractor, over "serious concerns related to [its] role in overseeing our nation's OPOs, which have been severely underperforming for decades."

There are major equity implications to these failures. OPOs have a jaw-dropping 10-fold variability in how well they serve Black communities, and, as past NAACP president Ben Jealous and one of us have written, "fewer Black donors means fewer Black recipients, which means more Black deaths," prompting Congressional leaders to call OPO reform an "urgent health equity issue."

OPO problems run far deeper than failure to recover organs. There are high-profile examples of misspent taxpayer dollars, criminality, and fatal lapses in patient safety, prompting both the bipartisan Senate investigation as well as one from the House Oversight Committee. And in late December 2021, a Federal judge unsealed highly offensive internal emails from the CEO of the Massachusetts OPO in which she justified potential policy harms to patients in poorer states, writing that "you're a dumb f*** for living there."

To deflect criticism, OPOs and UNOS have lobbied aggressively to confuse the recent increases in organ donors from opioid and other external causes (i.e., non-medical deaths like trauma, substance use, and suicide) with improved performance overall. If donation numbers are increasing, their argument goes, then the system must be performing well, and so the push for reform must be misguided.

This is a cynical attempt to politically profit from the opioid scourge and other second-order effects of the deadly pandemic, mischaracterizing the data to evade accountability. But the reality, according to peer-reviewed research, is that "it is indisputable that nationally the increased number of donors is almost wholly attributable to the drug epidemic, and reflects the byproduct of a national tragedy, rather than an improved system to be celebrated."

Similarly, a common OPO and UNOS refrain is that the U.S. now has the highest number of organ donors per capita of any country, which they use to characterize the American organ donation system as the "best in the world."

But context is critical. The higher organ donation rates in the U.S. actually reflect higher levels of societal ills, rather than superiority of the organ procurement system.

More plainly: We have more organ donors in America not because we have a strong -- or even remotely adequate -- organ procurement system, but because on a per capita basis among wealthy nations, we have many times more deaths in those subsets of deaths that allow for organ donation to occur. This includes 20 to 30 times more opioid deaths, 25 times as many gun deaths, the highest suicides rates, and more than twice as many fatal car accidents -- a number that spiked again precipitously last year.

In fact, while 90% of Americans support organ donation, a federally funded report found that OPOs may be recovering only one in five potential donors. OPOs have long benefitted from the goodwill Americans feel toward organ donation, affording them something of a halo effect, but the actual numbers are dismal.

To misunderstand this risks another tragedy: Jeopardizing urgently needed reforms to U.S. organ donation contractors. The data, when placed in proper context, are unequivocal.

HHS is currently soliciting input on potential reforms to the OPTN contract that UNOS holds. The answer is clear: HHS should heed the call from the to "revisit the UNOS monopoly," and pursue all options for reforms to deliver a more transparent, effective, and patient-centered OPTN. Americans -- and disproportionately patients of color -- are dying unnecessarily due to OPO and UNOS failures.

DJ Patil, PhD, is the former U.S. Chief Data Scientist. Greg Segal is CEO of Organize, a patient advocacy group. Ebony Hilton, MD, is an anesthesiologist and critical care physician at the University of Virginia. Lachlan Forrow, MD, is a senior fellow at the Harvard Medical School Center for Bioethics.