Jennifer Erickson served in the White House Office of Science and Technology Policy from 2015 to 2017.
After working on organ donation policy in the Obama administration, I have an unusual section in my will: After I die, one of my former White House colleagues is tasked with calling an investigative journalist to see if my organs were actually recovered.
Research highlights why this is a real concern: Thousands of organs go unrecovered every year from potential donors across the country. And every day, 33 of our neighbors die waiting for an organ or are removed from the waiting list for being too sick to transplant.
It doesn’t have to be this way. Ninety-five percent of Americans support organ donation, and most Americans are registered. (If you haven’t, please consider registering on organdonor.gov.) But whether someone is registered, to actually become an organ donor, a government contractor has to coordinate the donation.
Why hadn’t you heard about this? OPOs are allowed to grade and submit their own report cards to the federal government. As former U.S. chief data scientist DJ Patil said, that makes reporting “functionally useless” with “no system accountability.” In fact, in 20 years, none of the 58 OPOs has lost their government contracts.
Consider this: In my home state of Virginia, research shows the OPO recovered the organs of only 34 percent of potential donors. Other places around the country — including Los Angeles, New York City, northern New Jersey, South Carolina and Kentucky — had even lower recovery rates.
Recovery rates are not an esoteric data point; when OPOs fail to do their job, patients die.
When I was in the White House, industry stakeholders said they were looking into how to fix the metrics. I didn’t know that there were already government reports showing system flaws as far back as 1997 when Sen. Edward M. Kennedy (D-Mass.) asked about it. Since then, more than 200,000 patients have been removed from the waiting list because they died or were too sick for surgery — all awaiting a transplant that never came and systemic reform that never happened.
That’s the thing I’ve realized: To maintain the status quo, all government contractors have to do is wait out one call for reform after another and say the issue deserves more study. Even more offensive is that in recent years, many OPOs have hidden their underperformance behind increased deaths from the opioid epidemic.
Research published in 2017 in the American Journal of Transplantation shows just how often the system fails patients. The authors report that “thousands of people eligible to become a deceased organ donor every year never realize that opportunity.” As someone who has watched a loved one suffer with organ failure, it was heart-wrenching to read that 28,000 organs go unrecovered each year.
Citing that research, President Trump signed an executive order in July directing the Health and Human Services Secretary Alex Azar to “establish more transparent, reliable, and enforceable objective metrics for evaluating an OPO’s performance.”
This move — part of a broader plan related to kidney disease and organ failure — has bipartisan support from Sens. Todd C. Young (R-Ind.) and Michael F. Bennet (D-Colo.). But installing new metrics only provides a clearer picture: Government must then use the data to hold OPOs accountable.
Put simply: OPOs performing at the highest standards should keep their government contracts. And those that aren’t should be replaced immediately. At the very least, failing chief executives should be replaced. Leadership matters, and the stakes are life and death.
Just about everyone is touched by this problem; someone you know or love is on the waiting list or on dialysis or will be at some point. But thousands more Americans could have lifesaving transplants each year if we fix our organ procurement system. I want you to share in my outrage, but also know that we can save lives by making our voices heard.
Until the system is reformed, I can’t be sure that an OPO will carry out my donation wishes — no matter what it says on my driver’s license. This is why I added an investigative journalist’s name to my will two years ago. If I die in a way that someone can use my organs, I hope patients get them. And if they don’t, I want someone — finally — to be held accountable.