The partisan debates raging across the U.S. are often framed as a battle for the nation’s soul. The battle for our nation’s organs, however, is a distinctly more bipartisan affair.
It is a step in the right direction for the more than 113,000 Americans currently on the organ waiting list — and a testament to the importance of collecting accurate data to hold public institutions accountable for their outcomes.
This year, thousands of U.S. residents will die while waiting for an organ that never arrives. The real tragedy, however, is that this doesn’t have to be the case.
The system connecting waiting list patients with organ donors relies on government-funded middlemen called organ procurement organizations (OPOs) that coordinate between donor hospitals and transplant centers to manage the transplant process.
There are 58 OPOs across the country, each with a legal monopoly over the geographic area it serves. OPOs vary wildly in their quality and performance, in ways that can’t be explained simply by demographics.
Chronically low-performing OPOs are unable to recover organs from even one-third of potential donors, yet they have never lost their government contracts. This is because they exist in a regulatory framework that allows them to self-interpret and self-report their own outcome metrics. As a result, DJ Patil, the former chief data scientist of the United States Office of Science and Technology Policy, has called the current data for OPOs “functionally useless.”
Actually, these data aren’t totally useless — OPOs can rely on them as a convenient excuse to perpetuate poor outcomes.
Consider the New York City OPO, called LiveOnNY, which in 2012 the government flagged to be decertified. Astoundingly, this OPO was able to maintain its contract because the performance numbers it reported were so fraught with issues. Here was the argument: [Our data is] “self-reported and unaudited…[so] “clearly… fails to meet any reasonable definition of empirical.”
Melissa Bein, a former OPO clinical director turned whistleblower, said her organization reported false numbers to the federal government to “make it appear we were doing better than we were.”
Since January 2013, the New York City OPO has continued to underperform and, as a result, nearly 6,000 New Yorkers have either died or been removed from the waiting list after becoming too sick to receive transplants.
Of all possible causes of death, self-reported data issues from an unaccountable government contractor feel among the most senseless.
Research at the University of Pennsylvania, sponsored by Arnold Ventures, an organization we founded, showed that a better-functioning system could mean as many as 28,000 additional lifesaving organ transplants every year. Because the cost of a broken system is in many ways borne by Medicare, the government has every reason to fix it for patients and taxpayers alike.
More than 80% of the transplant waiting list is comprised of people needing a kidney, most of whom are placed on dialysis. Dialysis costs Medicare $35 billion a year — 1% of the entire federal budget. According to Nobel Laureate Alvin Roth, every person with kidney failure who receives a kidney transplant can save taxpayers at least $250,000.
Fortunately, there’s a simple solution to this broken organ transplant structure: a better system for evaluating OPOs. President Trump’s executive order calls for exactly that, giving Health and Human Services Secretary Alex Azar 90 days to propose a new metric that is “transparent, reliable, and enforceable.”
This can be accomplished without any additional reporting burden by using data already being collected by the Centers for Disease Control and Prevention. This change has been backed by past presidents of the American Society of Transplant Surgeons, the American Society of Nephrology, the Global Liver Institute, and patient groups like Organize, which has received grants from Arnold Ventures.
When the data paint a clear picture, government must act. Every month of delay means almost 1,000 more Americans will die or be removed from the organ waiting list for being too sick to receive transplants. Secretary Azar and Seema Verma, the administrator for the Centers for Medicare and Medicaid Services, can fix this now.
For patients, the clock is ticking.
Laura and John Arnold are founders and co-chairs of Arnold Ventures.