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Organ Failure: The Urgent Need for Reform

Delayed reform of organ procurement organizations, many of which are marked by "greed and incompetence," could lead to tens of thousands of unnecessary deaths.

LaQuavia Goldring stands in front of a wall looking at the camera.
LaQuavia Goldring has already been waiting for a new kidney for seven years; at one point, she was on dialysis 10 hours a day. (Luke Sharrett/For Arnold Ventures)

LaQuayia Goldring has suffered the effects of kidney failure for more than half her life. When she was in college, the Louisville resident hooked herself up to a dialysis machine for eight hours a night, unhooking herself in the morning for class. When her time on the machine increased to 10 hours, she had to cut back on both school and work. “I ended up going into heart failure not once but twice because of the fluid gains,” she said.

She knew struggling with renal failure would be grueling. Now 32, she’s lost five relatives to kidney disease, with four more still on dialysis. She didn’t realize, however, that one of the biggest obstacles along her own road to recovery would be organ procurement organizations, or OPOs — the regional monopolies responsible for recovering organ donations.

There are 57 OPOs around the country. Their rate of organ procurement varies by as much as 500 percent, as measured by the share of hospital deaths that translate into donations, totaling thousands of organs unrecovered every year.

Despite this, top executives are often lavishly paid, with annual compensation that can exceed $1 million and perks that have recently become the subject of congressional oversight. Many arrange extravagant trips and events — think Napa Valley and the Waldorf-Astoria — even as they cut corners when it comes to technology needs and the frontline staff who work with donors and their families.

There are massive discriminatory effects, with communities of color — and Black Americans in particular — far less likely to be approached for potential donation. In fact, OPOs — despite having a regulatory mandate to respond to all cases referred to them — are only half as likely to even show up if the potential donor is Black versus white. To make matters worse, peer-reviewed research has found that, even when they do respond, they spend less time with Black families and offer less compassionate care.

Because same-ethnicity organ donor-recipient matches are more likely, this systemic bias has artificially constrained the supply of lifesaving organs for patients who look like Goldring, prompting powerful congressional committees to characterize OPO reform as having “urgent health equity implications.” “Black and Brown people want to be organ donors, too,” said Goldring. “And more transplants would take place if OPOs did their jobs.”

Matthew Wadsworth, president and CEO of Life Connection of Ohio, an OPO based in Dayton, agrees that there are enormous problems. “There just hasn’t been any accountability. OPOs are a safe haven for low performers. Or they were, anyway.”

A Hidden Scandal

Organ donations are a modern medical miracle, saving tens of thousands of lives each year. That has brought OPOs enormous goodwill, but the organ procurement process has long been a hidden scandal. The need for organ replacement is massive — more than 100,000 patients are on waiting lists — but the opportunity to arrange more than 28,000 additional organ transplants is wasted each year due to OPO mismanagement. “Unfortunately, it feels like some OPOs don’t see organ donation as their primary mission,” said Dr. Malay Shah, surgical director of the liver transplant program at the University of Kentucky. “It costs them resources, to find donors.”

According to Shah, the OPO that covers most of Kentucky and parts of Indiana and West Virginia worked almost exclusively with hospitals in Louisville, Lexington, and Huntington. They’ve had minimal relationships with hospitals in smaller communities such as Paducah and Bowling Green, effectively denying donation opportunities to people in those geographies.

Late last year, the Centers for Medicare and Medicaid Services issued regulations that will create meaningful accountability for OPOs. Yet the rule gives them five years to shape up. No OPO will lose its contract until 2026, even as many patients currently in need of transplants will almost certainly not survive until then.

As many as 60,000 Americans are projected to die in need of transplants during this delay. “Five years is a really long time to measure OPO outcomes,” Shah said, “and there are a lot of people dying every year.”

60,000

Number of Americans who may die needlessly as a result of the five-year delay in enforcement of new regulations governing organ procurement organizations.

How Did We Get Here?

OPOs have their roots in a 1984 law known as the National Organ Transplant Act. The whole idea was to take greed out of the process, banning any cash payment (or “valuable consideration,” in the language of the law) for acquiring or transferring human organs. OPOs are overseen by the United Network for Organ Sharing, or UNOS. All of these groups are nonprofits, though one would hardly know it in reviewing their financial statements.

The federal government essentially outsourced organ procurement and abdicated all oversight responsibilities. OPOs are the only major program in health care to still operate on a 100% cost-reimbursement basis, with most of their expenses fully reimbursed by Medicare. Over time, that has created perverse incentives. The federal government pays virtually any bill presented by an OPO, with barely any accounting, despite federal watchdogs finding fraud, waste, and abuse.

For decades there has been no check on the number of organ donations they’ve failed to facilitate. As a result, no OPO — no matter how poor its performance — has ever lost its government contract, despite instances of fatal patient safety lapses or criminality.

Top executives are often lavishly paid, with annual compensation that can exceed $1 million and perks that have recently become the subject of congressional oversight. Many arrange extravagant trips and events — think Napa Valley and the Waldorf-Astoria — even as they cut corners when it comes to technology needs and the frontline staff who work with donors and their families.

Not only is the human cost enormous, with 33 lives lost every day due to lack of an available transplant, but taxpayers also pay financially for OPO failures. The majority of patients awaiting transplant need new kidneys. For patients like Goldring, having to wait has translated into years spent on dialysis. Patients on dialysis are entitled to coverage through Medicare. When this benefit was created back in 1972, the expectation was that it would apply to perhaps 10,000 patients.

Now, there are more than 450,000 Americans on dialysis, with total Medicare spending on care for patients on dialysis at $36 billion annuallya full 1% of federal revenues — with federal spending on care for all on kidney disease topping $120 billion annually.

To put it another way, Washington spends nearly six times as much on kidney disease as it does on NASA. The problem will only grow worse, with COVID-19 patients 35% more likely to have kidney damage or substantial declines in function.

This has all finally captured bipartisan attention. The Obama, Trump, and Biden administrations have all taken significant steps to reduce the organ shortage, and both the Senate Finance Committee and the House Oversight and Reform Committee have launched bipartisan investigations into OPOs and UNOS.

The new federal oversight rule was finalized in March. Each OPO will have to meet performance standards based on the top 25th percentile performers, or risk losing their designated service areas to higher performing OPOs. In effect, those that fail will be eliminated through consolidation with better-run OPOs. Evaluation will be based on data collected by the Centers for Disease Control and Prevention, eliminating an OPO’s ability to manipulate its own data reporting.

But because failing OPOs will not lose their contracts until 2026, members of Congress from both parties are calling for these standards to be accelerated. “This is a health care area that is actually fixable,” said Jennifer Erickson, a senior fellow with the Federation of American Scientists, “but it’s only fixable with sunlight and data.”

Patients Left to Fend for Themselves

Until now, Erickson said, too many OPOs have operated with a “disturbing mix of greed and incompetence.” CEO salaries even at the worst-performing OPOs often top $500,000, but it’s the fringe benefits that really stand out: NFL season tickets and wine country board retreats at taxpayer expense. Private jets for vacation travel. Rose Bowl floats and NASCAR sponsorships.

Some OPO leaders have lucrative side hustles, working with for-profit tissue and bone harvesters, which are essentially unregulated. They don’t even have to disclose those relationships. “OPOs essentially set their own budgets, so there’s no volume incentive,” said Greg Segal, co-founder of Organize, a patient advocacy group. “Their fees are set monopolistically, so if they recover fewer organs, they can just increase their fees per organ and still hit their revenue targets. But they do have volume incentives through their consulting contracts for non-organ recoveries, tissue or bones, which can skew their focus away from organ recovery.”

Even as they spend lavishly on salaries and perks, many OPOs skimp where it matters most — hiring enough line workers to meet with patients and keep in steady contact with hospitals. Outreach failures are particularly glaring when it comes to communities of color. “Too often, organ procurement organizations do not prioritize organ recovery from Black patients,” according to Ben Jealous, past president of the NAACP, in an editorial in Health Affairs. Patients like Goldring are left to fend for themselves.

LaQuayia Goldring says her experience with organ failure and poor medical treatment have motivated her to pursue medical school. “When physicians see an African-American present in pain, they don’t necessarily see that as real.” (Luke Sharrett/For Arnold Ventures)

Goldring said that poor treatment and lack of medical competency in organ failure has motivated her to go to medical school. “When physicians see an African-American present in pain, they don’t necessarily see that as real,” she said.

Dramatic improvement can come from a change in leadership — or just the fear that comes from greater scrutiny. In Indiana, after the OPO came under congressional scrutiny, donations shot up by 44% in one year. In Dayton, Wadsworth, of Life Connection of Ohio, will double the number of donations in just two years after taking over as CEO.

Psychologists talk about something known as the Hawthorne effect — that people work harder when they know someone is watching. For OPOs, the newfound sense that someone is minding the store is already making a tangible difference. “You change that by changing the culture,” Wadsworth said. “It’s a service mentality. When someone calls, you show up. We’re not going to find a reason not to do the case.”

The Need for Accountability

OPOs have long evaded scrutiny, in part because most people don’t even know that OPOs exist. When families lose a loved one, organ donation may not be at the front of their minds as they grieve, especially if they did not even realize that organ donation would have been an option for them. They certainly aren’t going to ask why some regional nonprofit they’d never heard of failed to show up and ask. 

“The biggest predictor of donation rates in any region isn’t what the donor registration rates are,” said Segal, whose father waited five years for a heart transplant. “It’s what families say qualitatively about the experience dealing with the OPO.”

There have been some high-profile failures — examples of organs, for example, that didn’t make it to their donors in time because lost in transit or left on airport counters. While Amazon or DoorDash can tell you almost to the minute when your order will arrive, OPOs rely on phone calls and paper manifests.

OPOs don’t like to talk about such problems, claiming that negative press will drive down donations — even as recent research has found this assertion to be entirely false. Whatever their concerns, they’re highly aggressive about stifling bad news. One Alabama whistleblower was threatened that he’d be “cremated alive” for exposing an OPO executive’s bone-and-tissue recovery kickback scheme. In hopes of blocking or weakening the new federal rules, OPOs have increased their lobbying spending by 500% over the past four years.

500%

Amount by which OPOs have increased their lobbying spending over the past four years in hopes of blocking or weakening the new federal rules

There’s a small group of OPOs that have committed to publicly sharing their financial and performance data in the interest of “transparency, accountability, and equity,” demonstrating what is possible if all OPOs prioritized patients over industry protectionism and self-interest.

The sooner accountability for poor results is made into reality — rather than something on the books waiting to occur years down the road — the sooner all OPOs will become more aggressive, Segal suggested, or at least more wary about sloughing off. For the first time in their history, OPOs face heightened federal attention, which has already resulted in the biggest gains they’ve ever made. 

“It’s just because they started to feel that people are watching,” Segal said. “They know they have to show up at cases — and every case is a chance to save a life.”

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