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My daughter Sadie was born with biliary atresia, a rare condition that ultimately led to liver failure at 4 months and the urgent need for a liver transplant. After enduring 93 long days on the transplant list, Sadie was finally blessed with a new liver. Although my family will forever be grateful for this miracle and the donor family, we cannot overlook the distress sparked by a severely broken organ donation system which leaves 20 Americans to die per day while on the organ waiting list.
When it comes to life or death of a child, absolutely no family should be forced to wrestle with uncertainty and rely on luck.
Deceased organ transplants are made possible through the generous decision of organ donors and their families, however, the process relies heavily on an organ procurement organization (OPO) — a government-sanctioned contractor tasked with coordinating donations. This is where the system falls apart.
OPOs as a group are vastly underperforming. There are roughly 2.8 million American deaths every year. Independent research from the University of Pennsylvania — using data from 2012 -2014 — estimates that roughly 24,000 people who die each year are clinically eligible to donate organs. But OPOs have been recovering less than half of potential donations, according to the report.
Some OPOs are higher performing but others, such as in my home state of South Carolina rank poorly. The OPO only recovered, according to the University Pennsylvania research, 24% of potential organ donors from 2012-2014 — meaning that 76% of potential donors’ organs went unrecovered. If OPOs were more efficient, with 100% donation recovery rates, we could have nearly 8,000 more liver transplants every year — as well as 20,000 other organ transplants. (The South Carolina OPO says its numbers have improved, with more lives being saved in recent years.)
So why is performance so bad? And why has it not been addressed? These answers are closely related.
Investigative journalism and government audits uncovered that fraud, waste and financial mismanagement were rampant among OPOs. Misspending taxpayer dollars on private jets, 5-star hotel stays, and football tickets were among some of the perks, leading the former Chief Technology Officer of the U.S. Department of Health and Human Services (HHS) to characterize OPOs as “monopolistic [and] rent-seeking.”
In some cases, OPO misbehavior has risen to criminality. Two executives from the Alabama OPO, for example, were sent to federal prison for a multi-million dollar kickback scheme in which the whistleblower reported being threatened with being “cremated alive,” and the Los Angeles OPO was recently found to have interfered with death investigations by coroners and obstructed an investigation by the Los Angeles Times.
Additionally, according to officials, no OPO has lost a contract in 20 years due to the ill-conceived manner in which the system is evaluated on self-reported information. This has allowed OPOs to manipulate records to make it appear that they were doing better than they were. Recently, an OPO whistleblower referred to it as a “culture of dishonesty,” and the New York Times Editorial Board highlighted “an astounding lack of oversight in the nation’s creaking, monopolistic organ transplant system.” Even former President Barack Obama’s lead official on organ donation policy noted that “when OPOs fail to do their job, patients die.”
New proposed regulations listed the majority of OPOs around the country as failing. The Secretary of Health and Human Services Alex Azar made it clear: “We’re going to stop looking the other way while lives are lost and hold OPOs accountable.”
Reforming organ donation has been met with bipartisan support, and, given the stakes, we all deserve much better than what we have today. Each month, nearly 1,000 of America’s most vulnerable patients are removed from the organ waiting list because they have died or become too sick for a transplant. Ensuring a high-functioning system of OPOs on the frontlines of organ recovery is a critical first step to help more Americans access lifesaving transplants.
We all must do our part to ensure that OPO reforms are implemented urgently. We must hold OPOs to a higher standard so families can receive the transplants they desperately need, especially for their children. And congressional members from both parties must engage on this issue. Especially for children like my daughter Sadie.
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