Following the Data Can Save Thousands of Lives on the Organ Waiting List and Billions of Dollars for Taxpayers
On October 20th, 2026, the U.S. Department of Health and Human Services (HHS) released a National Kidney Care Plan, highlighting the massive cost in lives lost and dollars wasted on the massively inefficient and dangerous U.S. organ donation system.
More than 100,000 Americans are stuck on the organ waiting list. Every day, dozens are removed because they have died or become too sick to receive a transplant. And each year, thousands of organs from willing donors are either never recovered or recovered but never transplanted. The human cost is measured in deaths. The financial cost is measured in the $52 billion taxpayers pay annually end stage renal disease – double NASA’s budget – largely because kidney patients are waiting on dialysis for organs that never arrive.
The solution? Better data policy.
What is an OPO? Organ procurement organizations (OPOs) are the nonprofit entities contracted by the Centers for Medicare and Medicaid Services (CMS) to coordinate organ recovery in a given geographic area. Every hospital in that area is required by Medicare to work with the assigned OPO, even if that OPO has been deemed unsafe by CMS. Since CMS awarded these monopolies territories to OPOs in the 1980s, there has been no competition.
In 2019, President Trump issued an Executive Order on Advancing Kidney Health, which set the stage for reforming an often-ignored area of U.S. healthcare based on objective data. The idea was simple: in order to keep their contracts, OPOs would have to prove – with data – that they were performing at a high enough standard. What came to be known as the OPO rule was finalized by the first Trump administration in 2020 and again by the Biden administration in 2021.
The rule unambiguously requires “outcome measures for assessing OPO performance to ensure they are transparent, reliable, and enforceable.”
This high-impact data policy has been endorsed from across the political spectrum. Leadership of the Senate Finance Committee, the House Oversight Committee, and the Congressional Black Caucus have all called for its urgent implementation, without dilution or delay. Advocates from Families USA to FreedomWorks have backed it. The opposition has been loud, well-funded, and unsuccessful in court. The support has been bipartisan, on the record, and waiting for the Administration to finish the job.
Seven years later, we are on the precipice of the first-ever competition for contracts to serve patients based on performance data. By following the data, the Trump administration can deliver a win for patients and for the taxpayer. Here’s how:
- CMS should use performance data collected by the Centers for Disease Control (CDC) paired with patient safety records to award donation service areas.
- The Health Resources Services Administration (HRSA) should publish monthly datasets to help find opportunities to save lives and to act as an early warning system for patient abuse and fraud.
- Congressional investigations should continue their bipartisan work – informed by these data – to shine a light on what is broken.
Recommendation 1. CMS should use performance data paired with patient safety records to award donation service areas
Donation service areas are monopoly territories in which Medicare requires every hospital in that area to work with the assigned OPO, even if CMS has deemed that OPO unsafe. These territories were granted in the 1980s and have not been open to competition since. As the National Kidney Care Plan noted, “monopoly status has insulated OPOs from competitive pressure, shielding OPOs from consequences of poor performance.” In that time, hundreds of thousands of Americans have died on waiting lists while the OPOs assigned to serve them retained their contracts.
The OPO rule is designed to put patients’ lives at the center of how donation service areas are awarded – rather than deferring to monopoly incumbency. The industry has fought the rule with lobbying and litigation. Nonprofit executives are paid multimillion-dollar salaries while CMS classifies their organizations as failing. OPOs have used taxpayer dollars to sue the federal government to block the OPO rule that measures their performance at recovering transplanted organs, saying that different data sources should be used. A federal court dismissed those claims on summary judgment just this month.
What remains is the waiting list.
Based on CMS’ Quality, Certification and Oversight Reports (QCOR) data which measures OPO performance, if OPO performance data remain constant when the next dataset is released (expected in 2026), 10 OPOs would lose their contracts and another 16 would have to compete to keep theirs.
That is what the rule was supposed to do – use data to serve patients and save lives.
This competition for contracts should come down to two questions – both of which can be answered with public data. First, is the OPO that is trying to expand its jurisdiction a high performer? QCOR data already give CMS that answer. Second, does the OPO have a clean patient safety record, or is it being investigated by Congress, CMS, and/or law enforcement, like the OPO in New Jersey? That answer is also on the record. Twenty-eight OPOs have been investigated by Congress in recent years. That is not a few bad actors. It is a pattern.
Using data turns the competition into what it was always supposed to be: a process that works for patients, ensuring they are serviced by competent, high-performing OPOs. Data transparency is critical because, as the National Kidney Care Plan points out, “[t]he entire transplantation ecosystem reflects a pattern of structural insulation that has shielded actors from competition, accountability, and transparency to the patients they serve.”
Recommendation 2. HRSA should publish monthly data to find gaps, stop patient abuse, and catch fraud early
The Trump administration recently put another dataset in place that can save lives: the Health Resources & Services Administration (HRSA) Ventilated Patient Form. These data show CMS where to act to save lives, and could also help identify Medicare fraud.
The United States is the only country with a modern transplant system that does not make its “process data” public. Those are the data that show what actually happened in a case: how quickly an organ contractor showed up, and which steps were followed or skipped along the way. Without it, no one can see where the process broke down and whether an organ was safely recovered or transplanted. When de-identified, aggregated to a degree that protects individual patients, and made public – these data are a powerful roadmap showing where organs were “lost” in the process. The key point is that these data must be detailed and timely. In other words, instead of looking at national organ discards at the end of a calendar year, the public should be able to see discards by OPO every month.
In 2021, six OPOs worked with MIT and the Federation of American Scientists to open their process data to the public. This project was staffed by graduate students who won MIT’s top Open Data prize. It proved that publishing the data was possible, easy, and useful – and could yield insights while protecting privacy. Researchers and the OPOs themselves could see where the gaps were. In a field where minutes matter, closing those gaps saves lives.
HRSA’s Ventilated Patient Form data can be a critical resource both in upcoming OPO competition cycles (e.g., showing CMS if OPOs serve all their assigned hospitals – regardless of urban/rural status or constituent income levels – with appropriate and timely care), as well as in identifying and arresting early systemic problems that indicate patient abuse.
A well-documented issue in the 2020 OPO rule was the “pancreas loophole” which allowed OPOs to claim the same credit for a pancreas labeled “research” as for an organ that was actually transplanted. The fraud that followed was predicted and predictable. A 2025 House Ways & Means Committee hearing included a whistleblower photograph of human organs stacked in a freezer in New Jersey. Hundreds of patients in Alabama had their pancreas harvested with no proof that they were ever used in legitimate research. As Congresswoman Terri Sewell (D-AL) said, “the trust has been eroded… and it’s critically important that HHS use its authorities to actually get rid of bad actors.”
A bipartisan group of Senators led by Senators Wyden (D-OR) and Grassley (R-IA) called out this blatant “gaming” of the system. Just one of the OPOs under the Senators investigation – Los Angeles based OneLegacy – harvested 2,062 pancreases for “research” since 2020, raising urgent questions about potential patient abuse and data manipulation.
And it’s not just pancreases. In 2023, the HHS Office of Inspector General warned of “systemic failures with the existing OPO cost-reimbursement structure which incentivize waste, fraud, and abuse of taxpayer dollars.” The OIG noted that these concerns “not only negatively affect the Medicare trust fund but also negatively affect people in need of organ transplants.”
Publishing data early and often lets HHS agencies, Congress, researchers, and the public spot patient abuse right away, including in life-and-death areas such as rampant skipping of patients on the waiting list, and even “selling” organs to wealthy patients from abroad who come to the United States and skip the line.
Monthly releases of OPO data – including how many donated organs are recovered and never used – can help congressional, OIG, and state attorneys general investigations root out both patient abuse and Medicare and Medicaid fraud.
Recommendation 3. Congress should continue shining a light through investigations on what is broken and needs to be fixed
Congressional investigations have done what data alone cannot: they have put names, faces, and whistleblowers behind the numbers. For example, skipping patients on the waiting list – known as out of sequence placements – happens “in nearly 20 percent of transplants.” Senators Grassley (R-IA) and Wyden (D-OR) made this impact clear when they pointed to investigative reporting showing that “LifeGift, a Texas-based OPO… skipped 15-year-old Marcus Edsall-Parr [from Michigan], who had been waiting for a transplant nearly his entire life.”
Four Congressional Committees have held six bipartisan hearings investigating dozens of OPOs in recent years. Its 2025 hearing included a whistleblower photograph of human organs stacked in a freezer. The Senate Finance Committee, led by Sens. Grassley and Wyden, has documented a data loophole for one organ (the pancreas) and the “gaming” it invited. These are bipartisan findings. Data show where the system is failing. Investigations show who is responsible and what families were told.
Potentially the most consequential recommendation of the National Kidney Care plan is the potential for HHS to launch an “Organ Donation Corruption and Safety Task Force, in coordination with relevant law enforcement agencies and state and federal partners, to ensure timely investigation of safety and fraud concerns.”
Congress should urge the Trump administration to move forward with this Task Force right away, sharing the data and documentation from their investigations so that bad actors can be held accountable and replaced. The clock is ticking, and lives are at stake.
Congress should make that flow of information routine. CMS and HRSA should publicly report OPO performance data and patient safety records to the relevant committees on a regular schedule, not only when requested. And, in alignment with the Open Government Data Act signed by President Trump in his first term, those data should be public by default. Transparency, oversight, and enforcement work together. Neither can work alone.
Few uses of federal data policy are more tangible than this: making sure Americans’ final organ donation wishes are honored, and giving patients on the waiting list a real chance at receiving a transplant. The data exist. The rule exists. The court challenges have been dismissed. What’s left is the decision to act on what the data show. That decision belongs to CMS, to HRSA, to Congress, and to this Administration. And that decision should be made now, while the patients are still alive to benefit from it.
The human cost is measured in deaths. The financial cost is measured in the $52 billion taxpayers pay annually end stage renal disease – double NASA’s budget.
If Congress needs help understanding the risks and rewards of a piece of technology, they shouldn’t have to rely solely on the sparknotes from a salesman. The rub is much simpler: Congress needs nerds.
If we set up the new OTA to do its job well, members will see it as the first stop to see what issues are lurking around the corner. They will bring their questions early. And they will keep coming back for more.
Even the best-designed policy rests on assumptions about who will staff it, how it will be funded, whether the responsible institutions have ever coordinated, and if the goals are achievable.