How to Stop Losing 17,500 Kidneys

"Someone left a human liver at the wrong hospital’s cargo bay in 90 degree heat, and no one noticed for an hour and a half."

If you're an organ donor in the U.S., there's a 25% chance your kidney ends up in the trash. Today's guests, Jennifer Erickson and Greg Segal, argue a government-enabled monopoly is the culprit.

We spoke with Erickson and Segal about how they successfully advocated for major fixes to the organ donation network. Erickson is a Senior Fellow with the Federation of American Scientists and former Assistant Director of Innovation for Growth in the White House Office of Science and Technology Policy. Segal is the founder and CEO of Organize, a nonprofit patient advocacy group. 

What you’ll learn:

• Why are 28,000 organs going untransplanted annually?

• Why does 1% of the federal budget go to dialysis?

• Why has a sole bidder run the U.S. transplant system for decades?

[Thanks to Rita Sokolova for her judicious transcript edits.]

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Tell me about organs.

Jennifer Erickson: What I will say out of the gate about the organ waiting list is that it alternatingly makes me want to turn over the table, it makes me so angry because it's unnecessary. But then also the great thing is, this is actually a healthcare problem that we can fix. The problem, it turns out, is actually the federal contractors. 

So who are the contractors? First, there are 55 local contractors. These are called organ procurement organizations or OPOs. Some have a state as their donation service area, some are across part of a state. 

Congress set up a monopoly contract in the eighties, called the Organ Procurement Transplantation Network, or OPTN. This national contract has only ever been held by one contractor, the United Network for Organ Sharing. If you've seen Grey's Anatomy or ER and they said “I need a heart, get UNOS on the phone,” that's UNOS. 

Just one example again of how bad it is: Greg and I recently got a whistleblower call in the last heat wave. Someone took a liver, a human liver that a family said yes to on the worst day of their life because a loved one died in an accident, and left it at the wrong hospital’s cargo bay in 90 degree heat, and no one noticed for an hour and a half. 

The OPTN has a board to set policy. Who's on the board right now? The current board, the board members of the nation's Organ Procurement Transplantation Network, were until recently the exact same board members for the contractor, UNOS. So, literally, they would meet on a Sunday as OPTN board members and then on a Monday as UNOS board members.

To say it's a conflict is an understatement: it's a Venn diagram that just is one circle. It's really, really bad. So as a first thing, this legacy board is still deciding policy for the nation. There are ongoing, bipartisan Congressional investigations into conflicts of interest and corruption.

The tech is so bad. The United States Digital Service found 17 days of downtime in recent years. Until recently, the algorithm that was protecting all organ donor patient information in the country, so STI status, mental health, every physical history, was from 1996. 

This is a fixable problem: it’s about the contractor, supply chain, it’s logistics, transparency. Congress unanimously passed a bill in July. The only other thing that passed unanimously that day was Tony Bennett Day.

Senator Todd Young, a Republican from Indiana, who lost a friend waiting for a heart, has done a lot of oversight into OPOs, including the OPO in Indiana. And in one year of that oversight — this has been peer reviewed and published — organ donation in the state of Indiana went up by 44 percent. It went up by 44 percent because they approached 57 percent more families. What in the hell was that government contractor doing before Todd Young started asking questions?

You mentioned the specific language of the law solidified UNOS as the sole bidder for the OPTN contract. What was that exact language?

JE: The predecessor organization to UNOS lobbied heavily to insert language into the National Organ Transplant Act (NOTA) that stipulated that, to compete for this contract, a contractor has to be an independent nonprofit with expertise in organ donation and transplantation. That phrase has always been interpreted to mean UNOS. In 2018, the last time there was an open contracting cycle, you had to have three years of experience to even submit a bid to the federal government. Now, that might sound sensible until you realize that there’s a national monopoly and only one group has ever had three years of experience. So no one else applied. 

The United States Digital Service produced a report called Lives are at Stake, which is not a normal name for a government report. It's a way of writing it in flashing red letters. They identified that phrase in NOTA as one that has restricted competition across decades, and in the summer of 2023, both the Senate and the House unanimously passed the Securing the U.S. Organ Procurement and Transplantation Network Act, which removed it. President Biden signed that into law in September. 

It was surprising even to Greg and me how this news broke through in the national media, but I think it was because Americans inherently know that monopolies are bad and no one, unless you're in this very particular world of organ donation, was aware that there was a national organ monopoly and that they were funding as taxpayers, and which has spectacularly failed patients. 

A lot of Americans are affected by the organ donation system every year. Help me understand why this successful bipartisan push didn't happen 10 years earlier. 

JE: I think one really important thing to know is that these organ donation contractors are funded by the taxpayer. Organ procurement is cost reimbursed, which means that pretty much anything organ procurement organizations pay for gets reimbursed by readers, by taxpayers. 

From Organ Donation Reform

That’s how you end up with organ contractor executives flying around on private jets and going to Sonoma wine retreats while the Centers for Medicare & Medicaid Services (CMS) say they're failing basic government performance metrics. If you're really worried about which vineyard you take your board to, you're probably not spending a ton of time thinking about how to staff underserved hospitals in the middle of the night. 

I think the system has stayed broken for so long because they had budgets to market themselves. There’s a halo effect here: 95% of Americans support organ donation. That literally polls higher than puppies and ice cream. So there's this tremendous amount of goodwill that the organ contractors not only benefit from, but actively pay to perpetuate through good news stories, by sponsoring the Rose Bowl and professional sports teams. And despite wild executive perks and abuse of funds, these contractors are nominally nonprofits. 

So no one was ever looking under the hood. And I really want to give credit to Greg here. When I was in the Obama administration in the White House Office of Science and Technology Policy, Greg’s organization brought us data showing 28,000 organs going unrecovered every year, showing which organs were going unrecovered in which states. That put it into technicolor for us that we had not only a preventable, outrageous tragedy and a responsibility to actually fix it and prevent it. Greg and the researchers that he worked with showed that there are 17,500 kidneys, 7,500 livers, 1,500 hearts, and 1,500 lungs that go untransplanted every year from potential American organ donors. For scale, that means the United States does not need to have a waiting list for livers, hearts, or lungs within three years, and the kidney waiting list should come way down. That data convinced not only the Obama administration, but also the Trump administration. This reform movement has now crossed three administrations, and that almost never happens.

Greg, where did you get that data? How was it generated and understood to the point where you could take it to the White House? 

Greg Segal: So our organization, Organize, was awarded the Innovator in Residence position in the secretary's office of the U.S. Department of Health and Human Services (HHS) from 2015 to 2016. We were still technically a non-governmental nonprofit, but in some sense, we were embedded within HHS. 

We had different levels of data access and we used ICD-9 codes, which have since been revised to ICD-10, to paint an objective picture of how well, or in many cases, how poorly, these industry stakeholders were performing. Many people probably directionally knew that something was amiss in this system, but it was very opaque. Before having this data, it was hard to articulate what was going on to members of Congress, and you sometimes felt like you were Christopher Lloyd from Back to the Future, where you're just the forensic accountant or crazy person in the office.

Get more specific for me on that data collection; some of our readers are nerds for this stuff. Can you access that as a private citizen, or did being embedded as Innovator-in-Residence unlock it? 

GS: We could access it as private citizens, but HHS employees really helped us understand why things were set up the way that they were, how things were coded, and which one of our ten ideas might actually be implementable. As Jennifer always says, government works by analogy. We had so many different ideas, and then civil servants would very soberly explain to us why nine of them were just completely unfeasible. When you're left with the one idea, that does not guarantee that it will happen. We then needed help understanding the ten different analogous projects that have happened in the last ten years to figure out how to implement ours.

So we used government data, and we validated it with some external data voluntarily shared from industry to verify that what we were doing was directionally correct with what was happening in industry. 

JE: One of the things that really helped was the specificity. There had previously been federally funded research showing that in the United States as few as one in five organ donors were having their organs recovered. So four in five were not, right? 

We knew that there was a gap between the huge support for organ donation and what was actually happening. What I’ve learned is that if there’s a big national problem, the government often does exactly the wrong thing. It punts, it does another big study, a consensus conference. 

What you really need to understand is the data: what is happening in the state of Virginia, what's happening across Texas or California. There are 55 of these organ procurement organizations, and we found a 470% variability in recovery between the top performers and the lowest performers. You need to ask, “What are the top performers doing that the bottom performers are not?” That really helps you get specific and follow the data to find problems you can solve.

Talk to me a little bit about the 17,500 untransplanted kidneys. Where are those kidneys, what is happening to them?

JE: So keep in mind, there's a huge generosity of spirit and national agreement about organ donation. Most people, myself included before I started this work, think of organ donation as, “Did you tick a box at the DMV when you got a driver's license?” And that really isn't the story of what happens. 

In the United States, only 2-3% percent of deaths are organ donation-eligible. That includes car and motorcycle accidents, overdoses, strokes, and traumas: something that means a patient isn't going to make it, but up to eight of their organs might. When someone is dying in an organ donation-eligible way, that hospital calls the organ procurement organization they're assigned to. That OPO is supposed to turn up to every potential case in a timely and compassionate way and have one of two conversations with the family: 

“Smith family, I'm so sorry for your loss. Jane was a registered organ donor. We'd like to proceed with her wishes.” 

Or, “Smith family, I’m so sorry for your loss. Jane seemed like a wonderful person. Can we talk to you about organ donation?” 

Keep in mind that 95% of Americans support organ donation. My older brother is a registered organ donor, and if, God forbid, something happened to him, and someone approached me at the hospital in a timely and compassionate way, I would consent to organ donation. If they do not approach me, then I cannot consent. If they do not show up at the hospital, even if he ticked the box at the DMV, those organs cannot be recovered. 

Another problem is that when they do show up, OPOs are not required to have basic standards of clinical care. So another way in which organs are lost is medical mistakes.

Organs are literally lost and damaged in transit every single week. The OPTN contractor is 15 times more likely to lose or damage an organ in transit than an airline is a suitcase. That should be shocking. Think about a donor family agreeing to organ donation on the worst day of their life, and what it means if their loved one's kidney gets left on the airport counter in Atlanta, or gets delayed and then thrown in the trash in another part of the country. And then, of course, what that means to one of the 100,000 Americans waiting to get that call for a lifesaving transplant. 

GS: I’ll also share a lesson on advocacy. There's a rare genetic condition in my family which causes heart failure. My dad and aunt had heart transplants, another aunt died waiting for her transplant. I spent a lot of time running around D.C., talking to people about the organ donation system, and had a lot of sympathetic meetings where people heard me out. I think I convinced them that I was right, and then they moved on to the next meeting and never thought about me again. 

Then I realized that kidneys are not only just as important as hearts, but far more expensive to taxpayers. If you need a kidney, you are almost certainly waiting on dialysis, which is then paid for by Medicare. In 2019, treatment for kidney failure cost Medicare $36 billion — it might be higher now, and is certainly higher if you include Medicaid numbers and VA numbers. 

One percent of the entire federal budget goes to dialysis. So we started foregrounding kidneys in our advocacy, but reform to the kidney donation system, at least the deceased donation system, is a vehicle for the same reforms for all of the organ categories. After we started talking about the importance of helping people get kidney transplants, within a year or two, there was a presidential directive on reforming the organ donation system that rode on the Executive Order on Advancing American Kidney Health.

I was so blinded by telling my story that I didn't think for a while about what's actually going to resonate most with a person across the table from me. And in D.C., often that is not just who has the most sympathetic issue, but whose issue has a pay-for to it. 

Why are kidneys eligible for cost reimbursement? 

JE: There are two areas of healthcare that are still under cost reimbursement, which means the taxpayer funds the vast majority of the system: critical access hospitals and organ procurement. As Greg alluded to, because of some amazing patient advocacy in the 1970s, kidneys have a unique classification and end-stage renal disease is the only major disease that qualifies you for Medicare regardless of age. In 1971, a patient was dialyzed on the floor of Congress, and Congress decided they needed to help patients on dialysis and made an exception so that disease could be covered by Medicare. 

So if we can get patients a kidney transplant, not only can they live a much better quality of life, which is what Greg and I care about, we can also save the taxpayer up to $1.5 million per patient in foregone dialysis. It's really rare in healthcare that patient and taxpayer interests are so closely aligned.

On paper, the Health Resources Services Administration (HRSA) and the Centers for Medicare and Medicaid Services (CMS) were responsible for oversight for more than a generation, right? How did the OPO executives get away with Napa Valley field trips during this time? 

JE: I think there were a few things. One is, you actually have two different types of contractors. The national contractor, OPTN, was supposed to be overseen by HRSA, which is one agency of HHS. The dozens of local OPOs are supposed to be overseen by Centers for Medicare & Medicaid Services (CMS). So you already had this division of oversight, and both agencies would say, “We have this government contractor — UNOS — that is supposed to be looking out over the whole system.” 

Here I'll quote Senator Chuck Grassley, who’s been investigating this since 2005. He said, “Asking one contractor to look out for dozens of others is like asking the fox to guard the chicken house.” It's fundamentally a failed model. It has left patients in a terrible and deadly position. The Lives are at Stake report details a continuous erosion of leverage from the government through the contracting cycles. 

For example, the report says that UNOS threatened to walk away and operate the U.S. transplant system outside the contract, which would be incredibly bad faith behavior. Government isn't a monolith, but I think some people in government perhaps thought they didn’t have alternatives. Keep in mind that OPOs are on four-year contracting cycles, and UNOS, the OPTN, has been on five-year contracting cycles. So all these contractors have had to do is withstand scrutiny during a contracting period, and then they're in for four or five more years.

A Forbes piece in 1999 called UNOS a “cartel”, and “the federal monopoly that's chilling the supply of transplantable organs and letting Americans who need them die needlessly.” Donna Shalala, who was the Secretary of HHS under President Bill Clinton, called out UNOS misinformation in a Congressional hearing back in 1998 and called for competition in the field. The then-leader of HRSA called for an end to the stranglehold of the UNOS monopoly, and yet 25 years later, UNOS is still the monopoly contractor in charge. I think people of goodwill tried to introduce reform, but UNOS still managed to keep the contract.

Was there any useful pressure from doctors or from hospitals on this issue? I'm imagining that if you're a surgeon waiting for a transplant, you don't like that the OPOs are leaving it by the front door on a hot day. 

JE: There have been some tremendous surgeons who have spoken up, and three have testified before three different congressional hearings in recent years, saying that too many of their patients are dying, and the system has to be fixed. There's also been investigative reporting about UNOS threatening whistleblowers. I'm grateful for voices for reform and I just want to acknowledge that this is why the government has to act.

You mentioned that HHS Secretary Donna Shalala called for competition and an end to the stranglehold UNOS had on the system. Help me understand, didn't HRSA have some authority here, rather than simply saying there should be competition? Was that authority used?

JE: It did, but there were two problems. One, when it came to contracting, there was often a strict interpretation of that phrase in NOTA, which kept constraining competition.

I would also say that there are other oversight responsibilities that both HRSA and CMS should use and never have. The technology of UNOS is deeply failing and antiquated — for hours at a time, it will shut down and no organs across the country can be matched. 

Organs are all on a clock, right? There's only so much cold ischemic time, or time outside the body, they can have. An astounding one out of every four kidneys that's recovered from a generous American organ donor is thrown in the trash. The federal government has never held UNOS or any OPOs accountable for that. 

Until recent data-driven regulation passed, CMS could not pull a contract from a failing OPO. They tried to decertify the Arkansas OPO in 1999, but ultimately lost in court because the regulation was written so badly, yet CMS didn't update it for 21 years until 2020. That update, which passed under both President Trump and President Biden, was the first big win for patient advocates. OPOs will be held accountable for their performance this year. Between that and the Securing the U.S. OTPN Act that removed the restrictive phrase that propped up the national organ monopoly, we’re hoping that 2024 is a different year.

GS: If you'll indulge me, I’ll add one other quick piece of context from 1999, not just as a history lesson, but because it is fiercely relevant now.

We like history lessons too. 

GS: It’s one thing for HRSA to say that we need more competition back in 1999, but government contracting doesn’t let them just pick whoever they want and bet on them. HRSA can only respond to credible bids that meet contracting requirements. The Forbes report mentioned that UNOS was interfering with other competitors’ bids, but even if everyone knew that, HRSA’s hands would still have been tied.

The March 2023 Senate Finance Committee investigation dug up a bunch of dirt, including emails in which executives joked that their patient safety review board was like putting your kids’ artwork up at home: “you value it because of how it was created rather than whether it's well done.” 

Talk to me about how you worked with Senate offices.

JE: I mentioned how Greg brought this issue to the White House when I was in the Obama administration. After the transition in January 2017, we brought it to Alex Azar, who was the Secretary of HHS. [Statecraft interviewed Secretary Azar on “How to Replicate Operation Warp Speed.”] Greg, Secretary Azar, and I all lost relatives to organ failure, so we were all connected in this rather unfortunate way. We said, “We want to show you everything we started, every place that we failed and where there's still work to do. This is not a political issue.” 

This is a rare bipartisan issue that's crossed multiple administrations. We had similar conversations with Congress members and their staffs, and as I said, Senator Chuck Grassley has done hero’s work highlighting problems at OPOs over the years. We also worked with then-ranking member Ron Wyden, who is now chair of the Senate Finance Committee, Senator Ben Cardin, and Senator Todd Young, who actually reached out to Greg over a cold email when Young was still a member of the House. The four of them have really been tremendous leaders in this work.

So we went to see members of the Senate Finance Committee and also talked to members of the House Oversight Committee, which had a bipartisan hearing back in 2021. We tried to bring the data and the experts to show them what was going on. The Senate Finance investigation is now four years old, literally longer than Watergate, and has driven many reforms. And I think it's important to realize that Congress can still work. I really want to give credit to not only those four senators, but also Senators Elizabeth Warren, Cory Booker, Jerry Moran, Bill Cassidy, and on the House side, Congresswoman Katie Porter, and the current leader of the House Oversight Committee, James Comer. There are a lot of unlikely bedfellows here. 

GS: The Senate Finance Committee investigation launched publicly in February 2020, but Senator Todd Young first contacted me in 2014, when he was still a congressman. He was elected to the Senate in 2016, and eventually in 2018, he moved over to the Senate Finance Committee, where Chuck Grassley was Chair at the time and had been investigating UNOS on and off since 2005. 

I think when most observers think of Senate committee investigations, they imagine scoring social media points off of a TikTok executive or one the more high profile politicized investigations recently. What makes for a good committee investigation? What makes committee oversight work?

JE: I think out of the gate, it helps to have bipartisanship and finding points of commonality. You need to be able to convince the two political parties that this makes sense to move on and ground things in data. 

I just want to give a tremendous amount of credit to members and their staff, who really stayed focused on patients at every turn. They subpoenaed UNOS when it was stonewalling the investigation, and staffers pored over patient safety documents to highlight exactly what happened and who to hold accountable. It was painstaking work. 

There’s been a ton of resistance from some of the contractors themselves, but I also want to call out the good actors. There have been OPO leaders who have called for reform, who said that their jobs matter and that they and their colleagues should be held to a high standard. Some of them have testified before both the House and the Senate. 

GS: There have now been two Senate Finance Committee hearings. The hearings are vehicles to achieve a goal, and the Senate Finance Committee was so strategic and thoughtful about the fact that there were a hundred problems with the system. We fixed a few, but there are still ninety-something left. 

The first hearing was in August of 2022, and a potential contracting cycle for OTPN was coming up. That hearing successfully showed that the status quo is unsafe and untenable, and by March of 2023, HRSA announced the intent to break up the OPTN monopoly in the OPTN Modernization Initiative. Then in the July 2023 Senate Finance Committee hearing, Senators advocated for the passage of legislation to amend NOTA to support the breakup of the monopoly contract. Seven days later, the legislation passed. So to your point about scoring points on a TikTok executive, if there isn't a clear policy goal, what's going to fill that vacuum is a partisan goal or someone's need to go viral for reelection. 

So HRSA's modernization initiative happened before the bipartisan bill passed? 

JE: Yeah. The Senate Finance investigation is ongoing, but it launched in February 2020. They issued a damning report of system failures that called for the breakup of the monopoly in August of 2022. The modernization initiative then followed about nine months later, saying that they needed help from Congress to amend the National Organ Transplant Act. That bill actually originally came out of the Energy and Commerce Committee in the House, which is the Committee of Jurisdiction. Both the House and Senate passed the bill unanimously last July. 

I feel like that back and forth relationship isn’t always obvious unless you’re plugged into the story of organ transplant oversight. A Senate committee hearing can basically push an HHS agency to act, even without a formal requirement that HRSA changes its behavior. 

JE: And this was not only Senate Finance, but also, huge credit to Senator Cory Booker and then-Congressman Mondaire Jones, who led a bicameral letter in November of 2022 that underscored the importance of the committee recommendations and called to break up the national monopoly and that CMS enforce the OPO rule as an urgent health equity issue.

We're now four years on from the investigation and just last week HRSA issued the first draft competitive Requests for Proposal (RFPs) for pieces of the OPTN contract. In our minds, nothing is actually going to be done until the monopoly is broken up, and there are new, competent contractors working in transparent contracting cycles that the government is holding accountable. 

The rule that lets CMS hold OPOs accountable based on objective data passed in 2020, but none of them have lost a contractor contract yet because of the sheer amount of time it takes to put those rules through and get through contracting cycles. The OPO rule went through a midnight regulatory review process in 2021, was passed again by the Biden administration, and then we had to wait for the next contracting cycle.

This year the federal government will collect data, but that data won’t be available until 2026, when failing OPOs will be replaced by higher performers. That regulation alone is projected to save 7,000 lives a year and one billion dollars annually to Medicare. So when will we think that the system is working for patients? When every part of the country is served by a high-performing OPO. That's not an abstract vision, you can look at performance metrics from the government. 

UNOS claims not to oppose the law change; they’re “excited to prove [their] value in a new competitive contracting environment.” Is that an accurate representation of their engagement with the legislative process? 

JE: I would go back to what Senator Chuck Grassley talked about, the fox guarding the chicken house. In the fight for the OPO rule, we saw that UNOS leaders were surrogates for the status quo on unenforceable OPO metrics and tried to block accountability. In similar fashion, the Association of OPOs lobbied against different provisions in the bill, trying to restrict competition.

GS: I think that there was a lot of laundering of that opposition through other groups, whether through an astroturf lobbying group or misinforming well-meaning patients who thought they were advocating for themselves but were doing it based on completely uninformed, misleading, or objectively incorrect inputs. In the last few years, lobbyists have said “We support the goals of increasing transplant, but we have edits,” but then their edits just oppose everything.

Kevin O'Connor, the chief executive of a Seattle-based OPO, said transportation problems are “minimal“ compared to the other reasons organs are discarded each year. He mentions biopsy findings, the inability to find a recipient, and poor organ function. What do you make of that? 

JE: There can be valid reasons to discard organs, but the United States is the only country that is throwing away one out of every four kidneys. I don't think anyone would be impressed by the “Look how many kidneys we didn't lose” argument much as they wouldn't want to hear a pilot say, “Look how many flights I didn't crash.” This is a system that has to operate at a high level every day, and we know how to do these logistics. Yet in 2024, we have a system where the technology goes down for hours at a time. The wifi at my house doesn't go down for hours at a time. And if it did, it would have no real consequence. That we have life and death systems that have such abject failures should be alarming.

In some instances, the system does work. Greg's dad got a heart transplant, but I do not think that it should have been a five year wait. We put patients and their families through way too much unnecessary pain, and the organ waiting list is an awful place to be. There are OPOs that do their job at a really high level, and I want every family and patient to receive that service. 

GS: To respond to that Kevin O'Connor quote, he is right that there are many reasons that organs are discarded. Jennifer is also right that the U.S. is an outlier. It isn’t necessarily true that one thing went wrong 100 times. It could be true that 20 things went wrong and they each went wrong five times, but the U.S. is the only country in which that happens. That still means that UNOS is failing to identify and remediate problems in the system. 

Yes, to Kevin’s point, transportation is a problem, but there are also ten other problems. I think that should only increase the urgency. Perversely, sometimes it just increases the feelings of fatalism in government. 

Are surgeon incentives an issue here? If you're a surgeon with a really high rate of successful transplants, you may not want to use a B+ kidney, you may want to wait for a better organ and contribute to discard rates.

GS: That is also a contributing problem, but let me give some context on how having an antiquated technology system exacerbates the problem. Remember, every organ is on a clock, and only good for so long. If I’m a surgeon, my patient is first on the list, and I'm offered the organ but for regulatory or perverse incentive, I don't want to take it for my patient, it goes to the next patient on the list. This becomes problematic because the technology is decades old. Seventeen percent of kidneys are offered to at least one deceased person before they are transplanted, because the system doesn’t do appropriate data hygiene to pull deceased patients off of the list. 

Are there also things that can be addressed for transplant centers? Absolutely. UNOS could make their technology nimble so that it's easy to go down the list, whether the surgeons are passing the kidney for a good or bad reason. They could identify policy problems, OPO behavior, or surgeon behavior, and go to regulatory bodies like CMS to demand they fix it. UNOS hasn’t done that. If you really press them into a corner, they’ll sometimes explain that there are lots of problems, but they have no track record of looking for solutions. 

Is there anything else I should have asked? 

JE: What I hope comes across is that this has been an effort across multiple administrations, with both political parties and two branches of government working to fix the system. It’s still not done, so we have to keep going. To win a policy fight, you have to win the same argument multiple times, and it’s important to stay vigilant beyond the regulation or law or front page story, until implementation actually affects people's lives.