The Trump Administration today announced an executive order aimed at fixing a flawed organ donation system that allows thousands of potentially life-saving organs to go unrecovered across the country every year. Reforming this system could save 25,000 lives a year and $13 billion in taxpayer funds over five years, Arnold Ventures-supported research shows.
The order aims to rein in organ procurement organizations, or OPOs, which for years have operated with little oversight and failed to make more organs available to patients in need. Arnold Ventures has funded research into reforming OPOs so they are more transparent and reliable, and so the government can identify those that are performing well — and replace those that aren’t.
The way the system works now, the 58 nonprofit OPOs who coordinate organ recovery with hospitals and transplant centers each control a specific geographic area and self-report, sometimes falsely, on their own success.
“Our government has a system to recover and distribute organs, and it’s failing the more than 100,000 Americans waiting for organs. Twenty-eight thousand organs go to waste in our country every year instead of going to the patients in need,” Melissa Bein told the New York Times in a recent video op-ed on this issue.
Bein once served as the clinical director of an OPO. Now she is a whistleblower who says her organization reported false numbers to the federal government to “make it appear we were doing better than we were.”
Arnold Ventures supported a study by the University of Pennsylvania that found organ recovery rates hovered between 24 and 33 percent in six states: California, Florida, Kentucky, New York, Oklahoma, South Carolina, and Texas. Despite such underperformance, the OPOs face little accountability from the federal government. Even a 50 percent recovery rate would result in 6,000 more life-saving transplants a year, the research shows.
OPOs act as a government-granted monopoly in the markets where they operate. They are given jurisdiction by the Department of Health and Human Services (HHS), yet they aren’t held accountable for their performance — which is a matter of life or death. After 35 years of self-reporting, no OPO has lost its government-granted designated service area.
The New York Times piece highlights the plight of Americans waiting for an organ. One man, Angelo, traveled across America to get on the transplant lists of other hospitals in a bid to increase his chances of receiving a kidney. He faced a seven- to nine-year wait in his home state of New York. An OPO there, LiveOnNY, faced closure for failing to meet federal performance standards, the Washington Post reported, but successfully appealed efforts by HHS to shut it down.
The move to regulate OPOs has widespread and bipartisan support. On Tuesday, Sen. Todd Young (R-Ind.) introduced legislation to bring greater accountability to the system, making good on a promise he made late last year in response to a series of Washington Post stories about the issue. He has support from the American Society of Nephrology, Dialysis Patient Citizens, and ORGANIZE, a nonprofit dedicated to transforming organ donation.
Also on Tuesday, Sens. Elizabeth Warren (D-Mass.) and Richard Blumenthal (D-Conn.) sent a letter to the Department of Health and Human Services and the Centers for Medicare & Medicaid Services seeking information about reports of deficiencies in the U.S. organ procurement network.
And those calling for reform have made their voices loud in compelling narratives:
- “Ninety-five percent of Americans already support organ donation. The bottleneck is not public sentiment, but rather OPO inefficiency and ineffectiveness.” — Dr. Goran Klintmalm, Chief of Transplantations at Baylor University Medical Center
- “It is essential to assess the fundamental question of how efficient the current system is at honoring the generous final wishes of potential organ donors and their next of kin.” — Dr. Tim Pruett, Past President of the American Society of Transplant Surgeons and the United Network for Organ Sharing
- “Normal toddler ailments like fevers or a stomachache cause my blood to run cold (which I’ve learned is not just a figure of speech). Fluctuations in our son’s routine lab tests could be nothing, perhaps a minor infection, or it could mean that his liver is beginning to fail, and we must confront the reality of putting him on the transplant list to wait for a new liver.” — Sarah Longwell, the mother of child in need of a liver transplant
- “Most people believe that when they register as an organ donor, that is the end of the story; in truth, it’s only the beginning.” — Bryan Sivak, former Health and Human Services Chief Technology Officer
Trump’s executive order gives HHS Secretary Alex Azar 90 days to propose a new reporting system for OPOs that is “transparent, reliable, and enforceable.”
Wednesday's executive order also aims to increase financial reimbursement for living donors, as well as improve care for patients with kidney disease by moving patients away from dialysis centers to more inexpensive home care.