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.
Both President Trump — via executive order — and elected officials from both parties are pushing for reforms to improve the U.S. organ donation system in order to save lives and taxpayer dollars.
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.
H.L. Mencken was right, “for every complex human problem, there is a solution that is neat, simple and wrong. “…no “simple bureaucratic change” of a death statistic that has been debunked as grossly inaccurate numerous times over the past 20 years will increase organ donation. The Arnold Foundation funded, Bridgespan report proposal of relying on “Hospital Deaths” as a metric to assess organ procurement organization (OPO) performance is absurd on the surface, with hospital death rates by region varying 651% percent across the 50 states. More importantly, OPOs already have 100% of hospital deaths and imminent deaths reported to them and verify this monthly in audits of hospital referrals. From these referrals OPOs evaluate on-site some 150,000+ possible donors. Unfortunately, on average 135,000 must be ruled out because the patients survive, do not advance to brain death, have communicable diseases, or are over 80 years old and no transplant center will accept their organs. Not even a perfect metric will change this. What CAN increase organ donation is changing transplant center metrics to promote their acceptance of older donors and marginal but viable organs and increasing donor registration and authorization rates. Today the US leads the world in organ donation, focusing on procedural and social change can build on this good result, playing with OPO metrics that are so unreliable that Medicare cannot tell a performing OPO from a non-performing OPO will make no beneficial difference.
Other factors include the different hospitals ‘numbers` or success rate statistics which can effect their evaluation process. Better numbers may mean more donations or funding. The insurance policy of one donor evaluation ‘in the chute’ at a time. Putting off or rejecting a donor in favor of finding a better candidate, takes time that not every potential recipient has.. And the sad fact that type O donors can help most all recipients, therefore using them up. Where as a type O recipient for the most part needs a type O donor only.
The assumption that there are 28,000 possible organ donors is based on grossly incomplete data of deaths in hospitals that neglects the most basic of requirements: a diagnosis of Brain Death or rapid cardiac death necessary for viable organ recovery. The research also disregards that OPOs evaluate between 150,000 and 180,000 possible organ donors each year, the vast majority of whom never progress to Brain Death or have contraindicated diseases. US OPOs lead the world in organ donation rate per death and in transplant rates per population. We can certainly improve since only slightly more than half of all Americans are registered donors and 30% who can donate at the time of death choose not to. However, simple-minded bureaucratic “fixes” based on flawed research will not help those 30% choose to donate life.