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‘Shocking Mismanagement’ in Our Organ Donation System Is Causing Unnecessary Deaths

Behind one of America’s greatest tragedies — the ever-worsening opioid epidemic — lies another: the abject failures of our nation’s organ donation system. Worse, opponents of major reforms to our organ donation system are exploiting this tragedy as they attempt to block long overdue congressional action.

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

What is the relationship with organ donation? Drug overdoses and alcohol-related deaths fall into the subset of deaths that allow for organ donation, so this sharp increase in opioid-related deaths has resulted in a record number of organ donations. It may seem like the silver lining of 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 – the organ procurement organizations (OPOs), which oversee local organ procurement, and the organ procurement network (OPTN), which manages the system – are hiding behind the rise in these desperation deaths to deflect criticism of what the House Oversight Committee called “shocking mismanagement” in organ procurement.

In fact, HHS has estimated that the majority of OPOs fail key performance measures, contributing to 33 Americans dying each day for lack of an organ transplant. And the Senate Finance Committee is investigating the United Network for Organ Sharing (UNOS), OPTN’s contractor, over “serious concerns related to [its] role in overseeing our country’s OPOs, which have been seriously underperforming for decades. »

These failures have major equity implications. OPOs have tenfold variability in how they serve black communities and, as former NAACP President Ben Jealous and one of us wrote, “fewer black donors means fewer black recipients, which means more black deaths,” prompting Congressional leaders to call OPO reform an “urgent issue of health equity.”

OPO’s problems run much deeper than the inability to salvage organs. There are high-profile examples of the waste of taxpayers’ money, criminality and fatal breaches of patient safety, which sparked both the bipartisan Senate investigation and that of the House Oversight Committee. And in late December 2021, a federal judge unsealed highly offensive internal emails from Massachusetts’ OPO CEO in which she justified potential political harm to patients in poorer states, writing that “you’re an asshole living there -low. “

To deflect criticism, OPOs and UNOS have lobbied aggressively to confuse recent increases in the number of organ donors due to opioids and other external causes (i.e. deaths not medical conditions such as trauma, substance abuse, and suicide) with improved overall performance. If the number of donations is increasing, according to their argument, then the system must be working well, and therefore the push for reform must be misguided.

It is a cynical attempt to profit politically from the opioid scourge and other second-order effects of the deadly pandemic, by distorting data to avoid accountability. But the reality, according to peer-reviewed research, is that “it is indisputable that nationally, the increase in the number of donors is almost entirely attributable to the drug epidemic and reflects the byproduct of a national tragedy, rather than an improved system to celebrate.”

Similarly, a common refrain from OPO and UNOS is that the United States now has the highest number of organ donors per capita of any country, which they use to label the American system as world’s best organ donation.

But context is key. The higher organ donation rates in the United States actually reflect higher levels of societal ills, rather than the superiority of the organ supply system.

More clearly: we have more organ donors in America, not because we have a strong—or even remotely adequate—organ supply system, but because, per capita, among wealthy nations, we have many more deaths in these subsets of deaths. that allow organ donation. This includes 20 to 30 times as many opioid deaths, 25 times as many gun deaths, the highest suicide rates and more than twice as many fatal car accidents – a number that has climbed again skyrocketed last year.

In fact, while 90% of Americans support organ donation, a federally funded report found that OPOs recover perhaps only one in five potential donors. OPOs have long benefited from Americans’ goodwill toward organ donation, which has given them a halo effect, but the actual numbers are dismal.

Failure to understand this risks another tragedy: jeopardizing urgently needed reforms for organ donors in the United States. The data, when placed in an appropriate context, is unequivocal.

HHS is currently seeking comments on potential reforms to the OPTN contract held by UNOS. The answer is clear: HHS should heed the call of the New York Times editorial board to “revisit the UNOS monopoly” and pursue all options for reform to deliver a more transparent, efficient and patient-centric OPTN. Americans – and disproportionately patients of color – are dying needlessly because of the failures of OPO and UNOS.

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