We need to fix the organ transplant network

Tens of thousands of lives are at stake

Right now, more than one hundred thousand Americans are on the organ transplant list. Last year, 5,600 people on that list died waiting for a kidney, liver, heart, or another life-saving body part.

The same will likely happen this year.

You might think these statistics reflect a tragic yet unavoidable reality in a country of over 333 million people, especially one with increasing rates of chronic diseases that can lead to organ failure.¹ However, 28,000 donor organs that could be used in transplants are not recovered each year, and 17,000 of those organs are kidneys. This is a deadly and incredibly expensive problem — the government spends over $36 billion annually on dialysis alone.

A better functioning organ procurement and transplant system would save an estimated 25,000 lives and billions of taxpayer dollars each year. So how do we fix it?

Superficially, the issue is quite straightforward: We need to replace the broken organ procurement monopoly that has been failing desperate organ recipients, their families, and American taxpayers for decades with one that actually gets donor organs to their intended recipients. The good news is that President Biden signed a bipartisan law last September that will attempt to do exactly that. In a few months, new entities will be able to bid on the government’s organ procurement and transportation contracts for the first time.

But the organ procurement industry is a complicated and intractable beast of a system. That means, despite Congress’ good intentions and historic legislative reforms, more must be done to reduce the prevalence of bad actors in the industry and empower better-performing organizations. Thousands of lives are at stake every year.

A rare consensus in healthcare policy

In the world of healthcare policy, consensus is hard to come by, especially within the halls of Congress. But here’s something everyone from Elizabeth Warren to Chuck Grassley agrees on: The United Network of Organ Sharing (UNOS) does a terrible job managing our organ transplant system. As a 2022 bipartisan Senate Finance report concluded, “From the top down, the U.S. transplant network is not working, putting Americans’ lives at risk.”

In 1986, Congress set up the Organ Procurement and Transplantation Network (OPTN) to manage the organ transplant database and match organs with recipients. Since the beginning, UNOS has been the only entity to hold the contract with OPTN. UNOS also works with 56 regional organ procurement organizations (OPOs), each covering a particular geographic area, that handle the work of visiting the hospital, receiving family consent, and recovering and transporting organs for transplant and research.

A monopoly in organ procurement and transportation isn’t inherently problematic. Imagine if multiple people representing different companies showed up at the hospital every time an eligible organ became available. It would inject chaos and delays into an incredibly time sensitive system.

The issue is that an OPO has never lost a contract, despite the fact that the majority have been given a failing grade by the Center for Medicare and Medicaid Services (CMS). And the difference between success and failure is stark, with organ recovery rates among OPOs varying up to 450%. Additionally, a report from The Economist estimated that, “If the bottom three-quarters of OPOs matched the top performers’ recovery rates in 2021, about 6,000 more organs would have been transplanted.” The reasons for this divergence are complicated, but a huge factor is that some OPOs are way more aggressive and organized in the manner in which they collect and transport organs. That same Economist report cited an OPO in Arkansas that just never picked up donor phone calls outside of the 9-5 workday.

The problems extend far beyond successful organ procurement. OPOs are paid based on a cost-reimbursement basis, in part through Medicare. So OPO CEOs have spent money on Rose Bowl parade floats, private planes, and golf outings, and written it all off as a legitimate business expense funded by taxpayer money. A federal investigation was launched in February to examine these likely instances of Medicare fraud, but really, the larger issue is that these failing OPOs are still operating despite decades of poor performance and bad behavior.

Theoretically, UNOS is supposed to keep the OPOs in check, but Senator Chuck Grassley likened its oversight to a fox guarding the henhouse. A Senate report found that UNOS habitually failed to hold any of their OPOs accountable, and has even concealed instances where OPOs have caused preventable deaths due to a failure in organ procurement and transportation.

And UNOS has some major performance issues of its own.

An investigation by the Senate Finance Committee found that failures in its organ matching technology resulted in preventable death and disease for potential organ recipients, and one study by the American Journal of Transplantation found that these shortcomings led to 17 percent of kidneys being offered to deceased candidates. Jennifer Erickson, a senior fellow with the Federation of American Scientists, told me that until March of this year, UNOS shared a board of directors with the Organ Procurement and Transplantation Network (the federal contract for organ procurement). Or, in her words, “they would meet on Sunday and set national policy as the OPTN board, and they would take off their OPTN hat, and the exact same 42 people would put on their UNOS hat and decide corporate policy on the next day.”

The current state of reform

For decades, critics have called for failing OPOs to lose their contracts and for UNOS to lose its monopoly over the organ procurement system (Forbes was covering UNOS’ failures back in the late 90s).

The first instance of actionable reform came in March 2021, when the Biden administration began implementing a Trump-era rule that would hold OPOs accountable based on objective data (previously OPOs were allowed to self-report and self-grade their own performance.) Now, OPOs can be graded based on performance metrics set by CMS, which will be able to decertify failing OPOs and replace them with more successful OPOs starting in 2026. By their estimate, CMS says the new rule has the potential to save 7,000 lives as the result of expanded organ procurement. Black organ recipients, who frequently face disproportionately longer wait times, are particularly likely to benefit.

Despite some heavy lobbying from UNOS, Congress followed the Biden administration’s OPO reforms with a landmark 2023 law aimed at breaking up UNOS’ organ monopoly. This fall, the Health Resources and Services Administration (HRSA) will start soliciting bids from different entities to break up the different tasks that UNOS controls. According to Carol Johnson, the administrator of the Health Resources and Services Administration, the first task will be upgrading the creaky tech system that too often fails to match potential organs to patients, a task that will most likely be accomplished by outsourcing it to an entity outside of UNOS’ control.

More can be done

These reforms represent a monumental achievement and will likely save thousands of lives, but they’re not the only ways to improve the organ transportation network so that it truly serves the needs of patients, rather than bad actors. Other policy ideas on the table include:

• Close the pancreas loophole: Since CMS began grading OPOs on their organ procurement, there’s been a reported rise in the number of pancreases collected from diseased patients. This isn’t because there’s been some unprecedented demand for the organ; the twisted reason is because pancreases can be classified as "research" donations, which have much less stringent safety guidelines for procurement and transportation, and are thus easier to collect. It’s literally just a loophole that’s being exploited so poor-performing OPOs can meet the new performance metrics. CMS needs to heed the bipartisan call from Senators to clarify by rule that only pancreases that are collected and used in FDA approved research will be included in their performance metrics.

• Public nominations should seat the OPTN board: Although UNOS and OPTN officially underwent a board separation in March, three months later OPTN still has members serving on its board that previously sat on the UNOS board. To best serve the interest of organ transportation system, the board should be chosen based on public nomination, just like the federal reserve or other national policymaking bodies. And the members should have no ties to UNOS.

• CMS needs to initiate the process that will replace failing OPOs: The OPO contracting cycle ends in 2026, and failing operators have until then to improve their performance. But if CMS is actually going to allow better performing OPOs to take over the contracts of failing OPOs, they need to issue the criteria that will shape that transition. According to Jennifer Erickson, there are CEOs from high-performing OPOs that are ready and willing to expand their territory, but they are unable to initiate plans because CMS has not released the guidelines or next steps that they need to follow. Matt Wadsworth, the CEO of the strong performing OPO Life Connection of Ohio, testified to this fact in front of the Senate Finance committee back in 2023. He also said hospitals are seeking waivers from CMS to move to a better organ procurement provider, but CMS has failed to grant the waivers.

This is not a comprehensive list, or even a comprehensive breakdown of all the nuanced issues related to the organ procurement industry. But despite all the complexity, the central problem is really simple: Our organ procurement system is wasting tens of thousands of organs each year, and the cost can be measured in human lives.

A lot has been done to restructure the system, but all of that work is still largely theoretical. Now, federal agencies must commit to real change. Over a hundred thousand patients on the organ transplant list are watching closely, and we owe it to these patients to stay vigilant and demand meaningful reform.

1. This includes diabetes and hypertension. A wide variety of issues can land a patient on the organ transplant list, but the overwhelming majority of those waiting need a kidney, often due to chronic kidney disease.