Public Radio for the Central Kenai Peninsula
Play Live Radio
Next Up:
0:00
0:00
Available On Air Stations
Support KDLL, make a donation today!

Reforming the country's organ transplant system

IV fluids hang inside an operating room during a kidney transplant surgery at MedStar Georgetown University Hospital in Washington D.C., Tuesday, June 28, 2016.    (AP Photo/Molly Riley)
IV fluids hang inside an operating room during a kidney transplant surgery at MedStar Georgetown University Hospital in Washington D.C., Tuesday, June 28, 2016. (AP Photo/Molly Riley)

Sign up for the On Point newsletter here

17 people die every day waiting for an organ transplant.

And there’s one non-profit monopoly that influences the lives and deaths of thousands.

It’s the United Network for Organ Sharing, or UNOS, the single organization that runs America’s organ transplant system.

“Far too many Americans are dying needlessly because UNOS and many of the transplant organizations it oversees are failing and seem uninterested in improving,” Sen. Ron Wyden of Oregon says.

Senator Elizabeth Warren wants UNOS banned.

“You should lose this contract,” Sen. Warren says. “You should not be allowed anywhere near the organ transplant system in this country. Patients and families deserve better than what they are getting from UNOS.”

Reform is coming. This fall, contracts will be open for bids for the first time.

  • Read: The reform announcement here. Read the Senate finance report on UNOS here


“Government now can hold its contractors, plural, to much higher standards. And if someone isn’t good, they can lose their contract,” Greg Segal, patient advocate and co-founder of Organize, says.

Today, On Point: Reforming the country’s organ transplant system.

Guests

Jennifer Erickson, senior fellow at the Federation of American Scientists. She served in the Obama White House as the assistant director of innovation for growth in the Office of Science and Technology Policy. Author of the opinion piece Dozens of Americans die daily waiting for an organ transplant. Why do we let this happen?

Also Featured

LaQuayia “LQ” Goldring, 33-year-old from Kentucky who’s been waiting 8+ years for a kidney transplant.

Transcript

LQ GOLDRING: People don’t understand. When you’re waiting for organ transplant, you have one foot in the grave and one foot on this side. That is not the life anybody wants to live, but it’s the reality.

MEGHNA CHAKRABARTI: This is LaQuayia Goldring. She goes by LQ. She’s 33 and lives in Kentucky. When LQ was just a toddler, she was diagnosed with a rare form of kidney cancer. Doctors had to remove her left kidney, but after six months of chemotherapy, LQ went into remission and things looked good. That is, until LQ turned 17. It was 2006 and doctors had awful news for her mother.

GOLDRING: Miss Goldring, we need to inform you and your daughter that her kidney is starting to fail, that within the year she’s going to need to be on some form of dialysis and she would need a transplant.

CHAKRABARTI: So LQ was thrust into the nation’s organ transplant system, a system she says is broken. America’s transplant system is essentially a monopoly run by one not for profit company, the United Network for Organ Sharing, or UNOS. It’s held a government granted contract with no competition for nearly 40 years. Democratic Senator Elizabeth Warren says the UNOS monopoly has failed patients. Here’s Senator Warren at the Senate Finance Committee hearing in August 2022.

ELIZABETH WARREN [Tape]: And without competition, the organ transplant system overall has become a dangerous mess. Right now, UNOS is 15 times more likely to lose or damage an organ in transit as an airline is to lose or damage your luggage. That is a pretty terrible record.

CHAKRABARTI: But for patients like LQ, this system and that record is all they have.

GOLDRING: We can’t expect patients to be able to do it all on their own, but we are. I’ve had to teach myself everything I know about the organ transplant system so that I’m able to live through it.

CHAKRABARTI: When LQ found out she was in kidney failure in 2006, she was confused. How could this be happening? The cancer was gone.

GOLDRING: Hold on. Wait. I don’t really get this. I thought only old people get kidney failure. In my mind, I’m thinking you had to be an adult to get kidney failure. I didn’t know that a teenager or a child could get kidney failure.

CHAKRABARTI: She was just 17 when she started dialysis. She was also put on the waiting list for a kidney transplant, a list that on average has upwards of 90,000 Americans on it every year.

GOLDRING: February the fourth of 2007, I got that incredible, incredible call that brought me to my knees that I finally have found a match. So because of that transplant, I was able to go to prom. I was able to go to graduation. You know, I’ve been able to see my nieces and nephews born and, you know, just been around for those key moments in my life that I always dreamed of.

CHAKRABARTI: LQ even went to college because you wanted to study, to be a doctor. But in 2015, when she was 25 years old, her health started to go downhill again.

GOLDRING: I had four kidney biopsies. And by that fourth one, mineralogist informed me … we did the medication changes. We’ve monitored your blood pressure at this time. We need to go ahead and inform you that you are back into renal failure. Your kidney function is now at 20%, and there’s not anything we can do to save the transplant.

CHAKRABARTI: That meant LQ’s life would once again hang in the balance on the transplant waiting list. She’s still waiting. This time, because of her first transplant, LQ has antibodies that make it more difficult for her to get another successful transplant in 2015. As we mentioned, she went back on dialysis and she is still doing it five days a week.

GOLDRING: For the past five, six years, I’ve been going in and having surgery on my arm at least once a month. So by now I’ve had about 200, if not more, surgeries. I’ve been hospitalized at least five times out of a year, if not more, for complications with dialysis. From fluid retention, to heart failure to pneumonia.

GOLDRING: It’s a full time … job being in kidney failure. Being on dialysis, you don’t get a break.

CHAKRABARTI: LQ has had to put a lot of things on hold in her life. She can’t work. She can’t pursue that medical degree. And some days she can’t even get out of bed. She’s been waiting for eight years now. The average wait time for a kidney is 3 to 5 years. On average, also, 13 people die each day in this country while waiting for a kidney transplant. LQ thinks there are a few factors determining why she is still waiting. One, she’s Black.

GOLDRING: A lot of the teams won’t say it, but race does play a big part on who’s being transplanted first. It’s very hurtful. To see Caucasians or somebody that’s white being transplanted over, somebody that’s Black or brown. But it happens every day.

CHAKRABARTI: According to the National Institute of Health, Black Americans are nearly four times as likely to suffer from kidney failure as white Americans, yet they are significantly less likely to receive a kidney transplant or even be put on the transplant waiting list. Under the current system, it’s also more difficult for rural Americans to receive transplants.

And LQ lives in rural Kentucky, and it’s much harder for those who don’t have money. People who have the means to travel to other states can get put on multiple transplant waiting lists. LQ cannot. So LQ has tried to overcome those barriers on her own. She’s actively looking for a living donor by herself through social media campaigns, handing out fliers, making T-shirts. In 2021, she even testified before the House Oversight Subcommittee via video from her dialysis chair.

On March 22nd of this year, just a little over a month ago, the Biden administration announced significant reforms to the nation’s organ and transplant system. The reforms begin with breaking up the United Network for Organ Sharing Government granted monopoly power.

We contacted UNOS for comment and in a statement, they said, quote, We welcome a competitive and open bidding process. UNOS also claims that many of the proposed reforms include changes they already developed, including, quote, a set of improvements in critical areas, including transparency, accountability, equity, transportation and modernization. End quote.

And we’ll talk about those claims more in just a couple of minutes. But for now, for LQ, she’s happy that the reforms are underway, but she also knows such government reforms can move very slowly. And meanwhile, she is running out of time.

GOLDRING: So I’m going to keep yelling at Congress. I’m going to keep writing Congress and keep talking to everybody, anybody who will listen. We need help. We need the system to be fixed. We need these barriers removed today, not a year from now, not six years from now. We keep hearing like, hey, we had this announcement, now we’re going to start doing this, this and that. But it’s going to take another year before it goes into effect. Why? I’m asking why. What can we do and what can Congress do? … They have all the power to fix the system.

CHAKRABARTI: … So will the reforms proposed by the Biden administration significantly improve America’s organ transplant system? How did we end up with a 40-year monopoly on a service that determines who lives and who dies among Americans with organ failure? Well, Jennifer Erickson served in the Obama White House as the assistant director of Innovation for Growth in the Office of Science and Technology Policy, where she led efforts on organ transplant reform. And she’s now a senior fellow at the Federation of American Scientists. Jennifer Erickson, welcome to On Point.

JENNIFER ERICKSON: Thanks so much, Meghna.

CHAKRABARTI: So, first of all, tell me, how significant are these Biden administration reforms when it comes to the current state of America’s organ transplant system?

ERICKSON: Oh, they have the potential to be absolutely huge. As you covered, no other entity, other than the current monopoly UNOS has held this contract since 1986. In fact, it’s even worse than that. No other organization has ever even been able to bid or apply, and the results are absolutely astounding. You mentioned the Senate Finance Committee bipartisan investigation. They issued a damning conclusion just last summer saying from the top down, the U.S. transplant network is not working, leaving American lives at risk. So that’s what these reforms promised to change.

CHAKRABARTI: Now, when you worked in the Obama administration, you were in the office of science and technology policy. Did you see these problems while in the Obama White House?

ERICKSON: I certainly saw the problems for four patients. And, you know, I’m so glad you connected with LQ. I mean, this is a deeply, deeply broken system, and I saw it personally. My father died of organ failure, the result of his military service in Vietnam and chemical exposure he faced there. So I certainly knew the human cost.

I’ll be honest, I didn’t fully understand at the time the causes, the fact that most of this death is unnecessary. I mean, the numbers are even worse than we’ve talked about today. If you add up not just people dying on the active waiting list, but those who died because they’ve been declared too sick to transplant. It’s 33 Americans every day, disproportionately people of color. So did I know that problem? Yes. Did I know that what was broken was so fixable? And the central problem was monopolies at the center not doing their job. I was starting to get a sense of that. But it wasn’t until I left the White House and really started digging into the data that I saw just how bad it was.

CHAKRABARTI: I see. And your father passed away because he was unable to get an organ transplant in time.

ERICKSON: He was too sick to transplant to.

CHAKRABARTI: I’m very sorry to hear that, Jennifer, but happy to have you on the show today to help us understand how we got a system that’s built the way it is and what we’ll need to do, America will need to do, to change it.

CHAKRABARTI: Today we’re talking about efforts to reform the organ transplant system in the United States, a system that has operated with a monopoly company for four decades, monopoly organization when it comes to organ transplant system transplantation in this country. So what are some of the things that a monopoly approach has led to over the past 40 years? Well, listen to Dr. Jayme Locke … a transplant surgeon from the University of Alabama at Birmingham, and she testified before the Senate Finance Committee last August about common problems and transportation errors in the current organ transplant system.

JAYME LOCKE: Discarded organs and transportation errors may sound abstract, but let me make this negligence real for you. In 2014, I received a kidney that arrived frozen. It was Ice Cube you could put in your drink. The intended recipient was sensitized, meaning difficult to match. The only thing we could do was tell the waiting patient that due to the lack of transportation safeguards, the kidney had to be thrown in the trash.

In 2017, I received a kidney that arrived in a box that appeared to have tire marks on it. The box was squished and the container inside had been ruptured. We were lucky and were able to salvage the kidney for transplant. But why should luck even play a role? Since the frozen kidney and the box of tire marks, I received other kidneys that had to be discarded either due to handling issues or transportation errors. But one week this May was particularly difficult, and one week I received four kidneys from four different OPOs, each with basic errors that led to the need to throw away those lifesaving organs.

CHAKRABARTI: So after Dr. Locke made real the kind of problems that come with even transportation of donor kidneys and donor organs, she asked the Senate Finance Committee, Why can’t this system be fixed?

LOCKE: You know, from our perspective, one of the things that we really want to understand is why have we not engaged experts in applied mathematics to really optimize our matching algorithms and organ placement? And why haven’t we really engaged experts in logistics around transportation? I mean, I think of the FAA, for example, what a remarkable entity, the fact that every day thousands of flights across the U.S. are in the air at the same time and don’t crash into each other. And they know exactly where a given plane is. And it happens almost seamlessly every day. We should be able to do the same thing for our transplant system, for our organs.

CHAKRABARTI: That’s Dr. Jayme Locke in congressional testimony last year. So, Jennifer Erickson, I have to say, I did not know that much about the intricacies of America’s organ transplant system prior to sort of diving in to learn about it for this show. And I was surprised that it’s been a monopoly run system for 40 years, but that is, in fact, by design. Can you tell us what’s in the National Organ Transplant Act from 1984 that helped create this system?

ERICKSON: Sure. Well, a bit of history. It was in the 1980s that immunosuppression took off, and that’s what allowed transplant to go from a very rare procedure, you know, identical twin donating to identical twin, to something where strangers could give this tremendous gift to each other. And so as transplantation took off across the country, Congress in a bipartisan effort to support patients, to support the generosity of American donor families, passed the National Organ Transplantation Act. And so the intentions were great. The execution has not been. So basically what they did in the mid-eighties is two things.

One, when it comes to local organ recovery, So the groups that actually turn up and go to the donor hospitals and talk to next of kin about donation, those all have monopolies, too. We have 56 monopolies around the country. Those are called organ procurement organizations, or OPOs. And then Congress created a national monopoly, the Organ Procurement Transplantation Network. That’s UNOS, the contractor, to oversee them all.

Now, then, basically Congress and the government largely walked away. They gave them blank checks, no accountability. And I think sailing on tremendous goodwill, the fact that Americans feel so good about organ donation, they trusted the system would work. And you’ve already heard from people that 40 years later, it just hasn’t. In fact, here’s a staggering statistic. According to a government funded study, we currently recover only as few as one out of five organ donors across the country.

CHAKRABARTI: So 80% of them are not recovered.

ERICKSON: Yep. And so when you think about that death that’s happening every day, 33 Americans, we think about that pain of Americans like LQ, waiting. And then you realize on the other side is the generosity of American donors who want to help. And then you have both local monopolies, some of which do a good job, some of which are failing tremendously, and then a national monopoly that was supposed to oversee them and hasn’t been. That’s how you get to the reality now where we just have a system that doesn’t work.

CHAKRABARTI: So, you know, I mean, we’ve covered various monopolies in all sorts of industries on this show for a while now. We’re very, very keen on focusing on where monopolies are not operating to the good of everyone or with the best outcomes. But I have to say, as you pointed out, this is the mid-eighties when the National Organ Transplant Act was first passed, and the first contract was created. I mean, isn’t it fair to say that at that time a monopoly actually made sense because this is a huge country.

And as you said, transplantation was still a relatively new, successful transplantation, was still a relatively new medical technology. It doesn’t seem to make sense at that time to have created a system where, you know, if you had several different local organizations to turn to when a donor, a family approved donation, like who would you call, how would you get that system running? We didn’t have the technology that we do now. I mean, wasn’t the idea that the system that was created in 1984, in fact, it should have streamlined and made as effective as possible transplants in the United States?

ERICKSON: I think that was the intention. But the tradeoff was always supposed to be oversight and accountability. You know, fun fact, the original coauthors of the National Organ Transplantation Act were Al Gore and Orrin Hatch and even Vice President Al Gore tweeted out his support for breaking up the monopoly and the reforms that are happening that you mentioned that were just announced by the Biden administration. So I think you’re right. It was a good intention in the eighties, but I don’t think there was ever the intention that Congress and the government would just walk away, would not look at the data that was showing whether the system was working or not.

You know, there was actually a hearing in the 1990s where then Senator Ted Kennedy and Senator Bill Frist talked about problems in the organ donation system. And, you know, now we’re talking about 20 plus years after that and it still hasn’t been fixed. You know, to LQ’s point, there’s a promise of it being fixed. So the problems have been hiding in plain sight since the nineties. But even back to your question for me, I had no idea when I was in the White House that, for example, the technology that matches organs to patients in need regularly crashes.

In fact, I can tell you it crashed last month, meaning that no organs across the country could be matched across. It crashed again in February for almost an hour. No organs could be matched. That was never the intention in the 1980s. But this is the problem. You know, you say you’re focused on monopolies. A lack of accountability means that there just hasn’t been the incentive to focus on what really touches patients’ lives.

CHAKRABARTI: And so in the private sector, the accountability ideally comes from competition. But here we’re talking about a nonprofit life or death situation. And the accountability should have come through the federal government, which it didn’t, as you’re saying, for 40 years. But this is a really, you know, deeply bipartisan issue, because here’s a moment from Senator Chuck Grassley, Republican of Iowa, who has actually been taking a look at failures in America’s organ transplant system for years. And he, too, points out that the biggest problems … is that lack of oversight and accountability.

CHUCK GRASSLEY [Tape]: When I started looking into this way back in 2006. The network acts like, quote, the fox guarding the chicken house. Instead of a trustworthy and independent oversight body that holds its members accountable.

CHAKRABARTI: Jennifer, let’s talk more specifically about where that lack of oversight you can see the biggest differences in. So like the local monopolies, for lack of a better system, the organizations that go to the donor hospitals, how is their performance varied from place to place?

ERICKSON: Oh, tremendously. I mean, the most recent data shows a 400% variability of these local contractors across the country. Put another way, some are four times better and some are four times worse. And that difference in performance is absolutely lives. And I’ll make it even more real. If you’re talking about recovering Black donors, showing up and serving Black families, then you’re talking about a tenfold difference in organ recovery around the country.

So not only is that massively disrespectful to Black families who in some places aren’t getting the same treatment as in other parts of the country, it also artificially constrained supply. And a third problem is same ethnicity matches are more likely. So if local contractors aren’t appropriately serving Black families in the donor hospitals, then they’re absolutely hurting Black patients on the organ waiting list. And so that’s just one example of where the system is failed. And, you know, back to Senator Elizabeth Warren and commenting on oversight, she was agreeing with Senator Chuck Grassley. She said this is an oversight. This is sitting on your hands while patients die.

CHAKRABARTI: So when we say there’s this massive difference in performance, you gave us one example. Are there other examples? I mean, logistics obviously seems to be one of them. We talked about that. But what are the other ways to see how various or local organizations aren’t doing what they’re supposed to?

ERICKSON: Well, the main thing you want to look at is the actual organ recovery rates. How have they done at their central job? And just last Friday, the Center for Medicare and Medicaid Services, CMS and the federal government issued a new report card and it declared that 74% of the nation’s organ procurement organizations were failing to meet tier one standards. Now, that is the accepted standards by which they automatically get to keep their contracts. That’s amazing. Imagine we were having a conversation and saying 74 % of America’s hospitals weren’t meeting standards.

I mean, that would be shocking. And the fact that that’s happening in organ procurement organizations is deeply concerning. And again, I want to be clear, some organ procurement organizations are doing the job. And what the whole country deserves, what patients need is to make sure that every single one of the organ procurement organizations is hitting standards. And not only that, that they are part of an oversight system that is making sure that they do and is helping them do that. Back to that failure on technology, when, you know, as UNOS technology goes down, local contractors can’t do their job.

CHAKRABARTI: But isn’t, you know, supposed to be the group that is doing the oversight on these local organ procurement organizations?

ERICKSON: They have supposed to be in terms of patient safety. You know, they have various processes. The Washington Post did a front page story talking about major lapses in patient safety. So there’s supposed to be a check in overseeing the system. Ultimately, it’s the federal government that needs to step in and remove contracts from failing organizations. And for the first time ever, HHS, the Department for Health and Human Services, says they will do that in 2026 if organ procurement organizations aren’t meeting standards. But the reality is we got to this position of the majority of OPOs failing those standards because UNOS has not done its job.

CHAKRABARTI: I’m seeing that, you know, says only declared a local organ procurement organization not in good standing. Twice in 37 years. And that declaration doesn’t even require the OPO to pause its operation.

Well, Jennifer, I want to note again that we did reach out to UNOS for comment and they provided us a statement saying that they support the improvements to the national system being brought by the Biden administration.

And in the statement, they said, quote, While we do not yet know what the next contract will look like, we welcome a competitive and open bidding process. As this critical work continues, we believe improvements must be collaborative, patient, focused and include diverse voices from across the community, end quote.

CHAKRABARTI: Jennifer, I’m trying to understand, though, how this one organization has had a basically unchanged government contract for 37 years, right? Like, did the federal government just sort of put them on auto renew or what happened every time the contract was supposed to come up for renewal?

ERICKSON: You’re right. They’ve won it every eight times and won it is a strange way to put it, considering, again, they’ve been the only one.

And I’ll give you an example. The last time the contract was open was 2018. Well, one of the federal requirements to even apply was you had to have a three years experience. Now, that might sound sensible until you realize it’s a national monopoly. Only one group has ever had three years of experience of doing all these functions. Right? So no one else applied. So it’s been this terrible situation where the government has put itself in this position of no other options.

And so I really want to give credit to Carol Johnson from the Biden administration … you had a clip from earlier who was praising competition to also bipartisan members in the House of Representatives. You know, we’ve talked rightly about the great work coming out of the Senate. Well, just last month, a bipartisan piece of legislation was introduced by Congressman Larry Bucshon from Indiana and Congresswoman Robin Kelley from Illinois that would help further empower the Department of Health and Human Services to break apart this monopoly.

And so to your point, it is a bipartisan issue. It is pulling people together because, again, once you look at the data and see how broken it is, it’s hard to stand up for failing technology in 2023 or organs left on airport counters in 2023. And so I really want to thank Congress for stepping in and making sure the administration will have the tools that it needs to make this competitive for the first time.

CHAKRABARTI: Organs left on airport counters. Look, I’ll be honest. That is the blows my mind, Jennifer, because I think the common belief in the transplant system is, you know, what you see on TV, that someone’s like shepherding this organ, cold, clutching it to their chest until it gets to the recipient hospital. That apparently is not how it happens all the time.

CHAKRABARTI: But as we go into a break, I want to just share that we heard from a lot of listeners who were either waiting for organs or have received transplants. They had very strong views on what life has been like. Here’s listener James of Atlanta, Georgia. And he said that organ donation saved the life of his firstborn son twice. His son ended up dying of other complications, but they’re still lifetime advocates of organ donation.

JAMES: It’s amazing how far science has brought us with the procedures and the medications and all that that make organ donation work. But it’s time for science to step up again with better data management and better communication. I’m convinced that in a world where I can order just about anything from my mobile device and have it delivered to my door within the hour, that we can give transplant coordinators the tools that they need to match their patients with the most suitable donor offers more efficiently.

CHAKRABARTI: We heard from many folks who are way there in the organ donation system or successfully received a transplant or were waiting and their stories were quite interesting. Here’s Houston Doherty, a professor from Long Island in New York. And he left us a message saying the only reason he got a kidney transplant is because he advocated for himself.

DOHERTY: I’m the thankful recipient of a kidney transplant due to the generosity of a former student of mine. And in the end found that going public and trying to find a live donor within my own network was really the only way I was going to find a kidney. Given the long list and the difficulty of navigating simply being on the recipient list.

CHAKRABARTI: We’ll talk about live donors more in just a few moments. But we also reached out to Carol Johnson, who, as I mentioned, is the head of the Health Resources and Services Administration. And we requested an interview with her about the initiatives or the reform efforts to the organ transplant system. She wasn’t available. But two weeks ago, Carol Johnson spoke with the House Energy and Commerce Committee. And here’s some of what she said.

JOHNSON: We are laser focused on reforming the system so that we have better accountability and better transparency and oversight. … And part of that is about bringing more competition into the program.

CHAKRABARTI: So, Jennifer Erickson, just to sort of understand the policy talk here, when Carol Johnson says the vendor and the private corporation that runs outreach are the same. She’s talking about UNOS, is that correct?

ERICKSON: Right. UNOS is the Organ Procurement Transplantation Network. It functions as the same entity.

CHAKRABARTI: Okay, good. So let’s talk about these reforms that are coming out of the Health, Resources and Services Administration. So, first of all, breaking up the monopoly. There is a request to Congress that was in the FY-24 budget. That would have to update that would necessitate updates to the National Organ Transplant Act that would, quote, expand the pool of eligible contract entities to enhance performance and innovation through increased competition. So breaking up the UNOS monopoly, what actually would that look like?

ERICKSON: Well, what it looks like is taking all of these very different functions that are currently part of one contract, one monopoly contract, and separating them out so that the federal government can choose from the best of the best. And I’ll just give some examples. Right now, the same entity sets policy. Who gets on the waiting list? How sick do you have to be? It runs technology. What is the user interface so you can match apositive kidney that becomes available from a generous donor family in Los Angeles to the next patient on the waiting list.

Logistics. How do you get the kidney to where it’s going? Compliance. How do you oversee the OPOs and patient safety issues that are happening locally to make sure that people are safe, both donors and recipients. And right now, those are all the same entity. But if you think about it, those are very different functions, right? Whoever is really good at health I.T., that’s a different skill set from the ethics and allocation debate.

That’s a different skill set from patient safety and making sure that things are happening as they should be with blood testing and other things. And so right now, we just have this Frankenstein contract where all of these different functions were stapled together and called transplant. But if you actually look at what the functions are, they are very different. So the exciting point of this moment is the best of the best in the country can come to the table for each of these functions and save lives.

CHAKRABARTI: But I want to emphasize something. Broken as it may be, UNOS, as we said earlier, is a nonprofit. Would this proposed change in the National Organ Transplant Act, open the door for for-profits to compete for these contracts?

ERICKSON: It opens the door for the best of the best by removing anti-competitive restrictions. Now, saying that an entity is a nonprofit doesn’t mean that it’s spending its money wisely and well. I mean, you had a quote from the previous CEO. He was making more than $700,000 a year funded by the taxpayer. And failing. Like that is not the record that people need. I mean, if you look at some of the salaries in the local contractors, organ procurement organizations, they can go north of $1,000,000.

Now, the issue is, right now the taxpayer is picking up the tab, but so often they’re paying for failure. And it’s really the patients that are paying for that failure. So what Congress is proposing is, again, breaking up the monopoly, agreeing with the Biden administration, removing anti-competitive restrictions. So it’s just an open and fair competition. So, again, best of the best, whether those are research institutions, whether those are logistics companies, whatever those might be in the particular field. HHS, the Department of Health and Human Services should be able to decide on behalf of patients who can best do the job.

CHAKRABARTI: Yeah, so agreed on that. We ideally want the best of the best but given the American health care system and what it is, I always feel pressed to apply a certain amount of scrutiny when we’re talking about possibly opening the door to, you know, an additional layer of for-profit activity in health care. Because I see this request to Congress also includes a request to remove the appropriations caps on these contracts, meaning spending more money, which, I mean, presume there’s a good argument for why more money is needed.

ERICKSON: Well, when you remove some of the restrictions that are in legislation, then it just goes through the normal appropriations process. So it should be up to Congress to decide. I mean, basically, this is all technical fixes to an almost 40-year-old law. And one thing too, if you’re talking about the finances of the system, I mean, again, what we are focused on, what Congress is focused on is the lives. One thing to know about kidney failure is kidney failure is unique in American health care. It is the only major disease that qualifies someone for Medicare, for taxpayer funded care, regardless of age.

So right now, the federal government is spending $36 billion a year on dialysis. Every patient that can get a transplant, not only is that their life a much better quality of life. That actually is more than $1,000,000 of savings for the taxpayer for every transplant. So we have every reason to get this right. And I want to say one other thing about the system. These local monopolies, along with critical access hospitals, the local monopolies, are the last remaining part of health care that is 100% financial pass through.

They get to spend already whatever they want to spend, and then bill the payer, which is usually you and me, the taxpayer. So right now I want to be really clear. What we have isn’t a cash strapped system where everyone is open and transparent and doing their best. What we have is taxpayer funded monopolies that until very recently had no oversight and accountability. So all of this about this modernization on behalf of patients is about turning on the lights, making sure it actually works.

CHAKRABARTI: Where in the set of reforms do we see really specific changes that would increase that oversight and accountability? Because I’m seeing that there’s the intent to, you know, issue solicitations for contracts for many awards in order to foster competition, which we talked about, and then ensure the organ procurement and Transplant Networks board of directors, independents. I’m still not quite seeing like where will the accountability, you know, sort of tools or levers be put into place?

ERICKSON: Well, a lot of this is going to come down to the federal government, the Department of Health and Human Services, and how they actually write these contracts. So what they need to do is write transparency and accountability into every one of these contracts. I mentioned UNOS’s technology going down as recently as last month. That should be publicly known. Like this is a system we all pay for. It’s a system patients pay for in their lives.

So what needs to be written into all of these competitive contracts is not just a competitive cycle to get them, but transparency throughout the contract cycle so that if any new contractor isn’t doing the job, they get kicked out too, and replaced by somebody better. You know, it’s not, How do you have competition one time in 2023? It’s about how do you have transparency and accountability on an ongoing basis. So Congress is giving the administration those tools that it asked for, and then the administration has to do the job on behalf of the American people. And write transparency and accountability into every one of those contracts.

CHAKRABARTI: So I’m just trying to imagine, like presuming all these reforms go through for a moment. I’m trying to imagine what a revamped organ transplant system in the United States might look like. I mean, when we’re talking about the need to modernize systems and logistics and even just getting organs from donors to recipients, I mean, could we be in a world where when I think logistics, I think Amazon. Like a company like Amazon might be part of the system?

ERICKSON: Well, there are logistics companies that get the job done on behalf of Americans every day on things much less sensitive than kidneys. So, yes, I mean, there could be any logistics organization that’s interested could come to the table. And to your point, Meghna, about what could this system look like?

Let’s make this real for a second. The lowest estimate right now of unrecovered transplanted organs every year is 28,000. 28,000 organs going to waste from generous American donor families. That’s 17,000 kidneys. That’s almost 8,000 livers. That’s 1,500 hearts. That’s 1,500 lungs. That is enough that within three years, the United States doesn’t have to have any waiting list for livers, hearts and lungs. If the system is working and the kidney waiting list would come dramatically down.

CHAKRABARTI: Well, now, this makes me wonder of what might happen to UNOS, the organization that for more than 37 years has held that Monopoly contract that was first created by the federal government. Because we hear things being said from folks like Democratic Senator Elizabeth Warren of Massachusetts and at a Senate Finance Committee hearing in August, she said that she thinks when the bidding process for contracts opens this fall, UNOS shouldn’t even be considered.

WARREN [Tape]: You should lose this contract. You should not be allowed anywhere near the organ transplant system in this country. Patients and families deserve better than they’re getting right now.  

CHAKRABARTI: Jennifer, what do you think about that?

ERICKSON: I think that the Biden administration will run an open and fair competition supported by Congress, and UNOS will run on its record. And that’s why we have to be really clear on what its record is. Its record is one in four kidneys thrown in the trash. Its record is again losing organs in American airports. Its record is technology that goes down. Its record is really divisive policymaking. I mean, you know, this is the subject of a class action lawsuit on behalf of 27,000 Black kidney patients who’ve been systematically discriminated against. So my take, let UNOS run on its record and then turn on the lights and see what the record really is.

CHAKRABARTI: Does UNOS spend money on lobbying?

ERICKSON: Yes.

CHAKRABARTI: How much?

ERICKSON: Well, interesting. You should ask. Anyone interested can go to Open Secrets. But they have dramatically increased their lobbying in recent years. There was reporting from the Project on Government Oversight … that wrote about both organ procurement organizations and UNOS. More than doubling their lobbying in recent years. And so, you know, Senator Chuck Grassley mentioned this, too, about tactics that he’s concerned not be deployed in order to keep the contract.

You know, back in 1999, when the contract was up, Forbes wrote an article calling UNOS the cartel needlessly chilling, the supply of the nation’s organs and talked about the campaigns it did at the time to keep others out of the competition. So now, are they lobbying to keep the contract? Sure they are. They say they’re open to competition. And so what we need to make sure happens is that the best of the best come to the table and that everyone is judged on their actual capabilities.

CHAKRABARTI: Well, as we sort of round the corner towards the end of today’s conversation, I want to hear from a couple of more listeners. This is Jennifer from Long Island, New York, also. And she told us that she received a heart transplant at the age of 13. She’s 40 years old now and very, very thankful still. But she also thinks that everyone deserves the same opportunity as she had.

JENNIFER: I always tell people, people are dying every day for no good reason. My hope is that one day there is no more waitlist. Everybody would get the second chance and sometimes even third and fourth chance that they need to have a lifesaving organ transplant because it truly is the best gift that you can give to somebody.

CHAKRABARTI: Couple more New Yorkers here, because we also heard from Glenda and Ira. They called to tell us they’ve got some concerns about the proposed changes because they think the current organ transplant system works.

GLENDA: I had a simultaneous kidney-pancreas transplant in 1999. 24 years ago. And since then I have been free from a previous 40 years of Type one diabetes and kidney failure.

IRA: The system works for us and still works. There may be pieces, as in any complex process, that could be improved, but this is a system that works and should not be broken up into piece part.

CHAKRABARTI: So, Jennifer, we’ve got about a minute left here. I mean, no set of reforms is perfect and the devil’s always in the details, right? As you said, a lot depends on how the contracts are written. I mean, do you have any reservations about the new reforms or things that you’re going to keep a close eye on?

ERICKSON: What I’m keeping an eye on is, again, just making sure the best of the best do come to the table, that they’re able to come to the table, that the competition is open and fair. Because let’s be clear, for the 33 Americans dying every day on the waiting list, the system is not working. For LQ, who you talked to at the start of the program. The system is not working. For heart transplant patients who have no living donor option and are dying on the waiting list when there doesn’t have to be a heart wait list at all, the system is not working. And so I don’t fear reforms. What I and other patients and patient families fear is a perpetuation of the status quo. And that’s why I’m so grateful for all the sunlight coming to this issue.

Related Reading

STAT News: “The organ procurement system is failing people of color like me. It’s time for reform” — “I am a Black woman who has been waiting for seven years for a kidney transplant. The organ procurement system has failed me — apparently by design.”

This article was originally published on WBUR.org.

Copyright 2023 NPR. To see more, visit https://www.npr.org.