Nancy Solomon: It's The Brian Lehrer Show on WNYC. Welcome back, everybody. I'm Nancy Solomon from the WNYC and Gothamist newsroom, filling in for Brian today. We'll take a look now at America's broken organ donor system. It's estimated that over 25,000 viable organs are wasted each year due to mismanagement and weak scrutiny. The current system is managed by a private nonprofit called the United Network for Organ Sharing, and the 56 Local organ procurement organizations overseen by this network have, for years, faced numerous complaints for endangering patients by mismanaging donations and transplants.

Advocates say that people of color are also less likely to be put on transplant waiting lists. A bipartisan bill may soon bring some necessary change to this country's organ transplant system. If signed into law, the bill would break apart what has, in effect, been a monopoly. The aim is to secure better oversight and more transplants each year, desperately needed, because some 17 Americans die every day while awaiting a transplant. We'll talk about the roots of these long-standing issues and the reforms that appear long overdue.

Joining me now is Julia Métraux, a fellow at Mother Jones covering disability and public health. Her story in Mother Jones is headlined, Congress is Finally Fixing the (Very Broken) Organ Donor Network. Hi, Julia. Welcome to WNYC.

Julia Métraux: Thank you so much for having me and highlighting this important issue.

Nancy Solomon: We'd like to hear from listeners, of course, especially if you've dealt with the National Organ Donor Network up close, help us report this story. We also want to know your thoughts about the impact of the bipartisan bill aimed at improving the system. 212-433-WNYC, 212-433-9692. If you can't get through on the phone, you can text us at that same number, 212-433-9692. Again, I'll give you that number, 25,000 viable organs are estimated to go to waste each year. Julia, how does that waste happen?

Julia Métraux: I think that waste happens for several reasons. I think one thing that it's important to look at when it comes to the US system versus others is that countries that might be doing a better job, they are much smaller. Essentially, what this new bill will do, it will allow HHS to give out more federal contracts for more oversight. It will break up the monopoly. It's really frustrating. There was a Senate hearing in August 2022, and it was highlighted that between 2010 and 2020, there was about 1,000 complaints against the 50 or so organizations that are in charge of retrieving the transplant and giving them to people who desperately need them.

There was around 1,000 official complaints, those were from patients, or families, from transplant centers and even OPO staff, about issues within the system. Of course, even though there has been some very official disturbing complaints, the way the system was built, I don't think anyone had any ill intent. There have just been decades of evidence that there needs to be reform, and that is fortunately seems to be underway, including like I had highlighted in my article that Black people's kidney functions were being measured incorrectly.

They decided to change that last December, and we're still waiting on the outcome of those changes. Unfortunately, with a system that hasn't been working well for decades, it's going to take more than a few days effect, but patients desperately need change, and doctors themselves are very much on board change as well.

Nancy Solomon: I'm trying to wrap my head around this. Here we have a life-and-death situation, and the toll is staggering. I don't quite understand. It's a mismanagement from these companies, but I don't understand how did we get here? Is there no incentive in the marketplace for them to do a good job? Why is it that this an industry where they don't seem to be doing a very good job?

Julia Métraux: I guess that's a very good question as well. There was a congressional hearing in 1998 about issues. There had been reports from the Government Accountability, GAO. I might be getting their acronym wrong, in the early '90s, so people have been raising an alarm for a long time. I think an issue, too, is that the people who this desperately affects the most unfortunately die because of a broken system. As one of my sources in the article said, Kendall, who is a liver transplant recipient, it just unfortunately makes some of the impacts of this almost invisible in ways because people don't have to hear people shouting, but there has been bipartisan critiques of this system for decades.

There just hasn't been enough change, and that's entirely frustrating. It's almost hard to answer that question, because it very clearly has been broken for so long, and have needed change.

Nancy Solomon: Tell us more about the United Network for Organ Sharing. If I understand it correctly, this is the nonprofit that has an exclusive contract to manage the whole network, is that right?

Julia Métraux: Yes, that's correct. That nonprofit, which has the public-private model was created around the same time that the network was actually created, if I understand correctly, too, to run it. Like I mentioned, for countries that do this better, they're a lot smaller. It doesn't make sense for more than one group to oversee it. There hasn't been as much, I guess, huge complaint that there's a lot of corruption within that nonprofit. I also do have questions because of the organization, the 50 or so that are underneath it, they have to get recertified every four years by federal officials, not just by the nonprofit. It's also a question of why the government has been giving these organization the okay when there clearly have been issues.

Nancy Solomon: Let's take a call. We have Kylie in Northern Virginia on the line. Hi, Kylie.

Kylie: Hello. Hi. I don't know how appropriate this question is, but I wanted to know if your guest knew about the marketing and information campaigns to get more people to opt in to organ doning. I myself am an organ donor, but I have a lot of people in my family who have ethical issues against organ doning, but they feel unfounded. It just feels like maybe there should be more of a marketing or public information campaign to get more people to opt in, and I just didn't know if maybe I missed it, or if that's not really happening.

Nancy Solomon: Before we get Julia to answer your question, if you're still there, Kylie, what are some of the ethical issues members of your family have with it?

Kylie: I think that there's this stress about who gets the organ, where the organs go. I know some people have religious objections, and I don't know that I've ever heard a pastor really voice religious objections that like, "You're supposed to take your organs with you." I'm not really sure about that, but the people who I know don't really seem to have-- It seems like they're operating with not enough information, but they've made the decision that organ doning is not for them.

Nancy Solomon: Julia, is this something you've looked at, the marketing to get people to become organ donors?

Julia Métraux: Yes, I've looked at it a little bit, and I can just quickly say at the end of my article, I do mention that you can still opt in, become an organ donor, even though there has been mismanagement including some buyable organ going to waste. People still desperately need organ donations. As the system improves, that still remains the case. The system is broken, in part, due to mismanagement. There is some corruption, but even some concerns about corruption, I don't think should oversee the importance of being an organ donor, of course, if your health allows it.

It is so important, and there should be more marketing. I don't want my article to come across it anyway like, "Oh, don't do that. The system's broken," but people still desperately need organ donations. It's pretty easy to do. I would just Google how to sign up. Of course, if you are going to donate one of your kidneys, that is something you can do while you're alive, and that is the most common type of transplant being done. It's a very good thing to sign up for if you're comfortable doing that and that is definitely something that people should consider doing.

Nancy Solomon: If you're just joining us, I'm Nancy Solomon from the WNYC newsroom filling in for Brian today. My guest is Julia Métraux, fellow at Mother Jones covering disability and public health, and we're talking about her story in Mother Jones. Congress is finally fixing the very broken organ donor network about the roots of some of the longstanding issues in the organ donor system. Let's take another call and then we will get to the bill that's working on fixing this. We have Michael in Morningside Heights. You're on the air.

Michael: Good morning.

Nancy Solomon: Good morning.

Michael: Actually, I have a question, but the previous caller reminded me of something else that your guest might comment and then I'll ask my question, which is that I don't remember the details, but I know that the law for living donors for kidney and liver, Congress has not passed laws enough to help cover all the medical costs and the recovery time for living donors. They were really left short. Again, I don't remember all the details, but could you speak to that first before I ask my question?

Nancy Solomon: Julia?

Julia Métraux: That is definitely something I've heard of as well, and there is also other bills currently being raised in Congress, not just about this. There was one that was introduced, I forget when, it's been this year, about trying to improve incentives in a non-monetary way to see how the government could better support and incentivize people to become organ donors without people potentially paying any personal cost. I don't know if that helped answer that question.

Nancy Solomon: Michael, you want to also tell us your second question?

Michael: Yes. The first question that occurred to me was, how is it that we expect that having multiple organizations to oversee and manage is going to improve the system when there's one, and apparently Congress and any other government agencies can seem to manage this single organization. It seems to me would make it more difficult to have it all spread out.

Nancy Solomon: Interesting question. Julia?

Julia Métraux: My understanding, and I think just looking at other countries that don't have as high rate of organs going to waste, that they are much smaller. I think giving multiple federal contracts could potentially lead to more oversight because it just isn't as bad in some other countries. That's why I think that could be helpful, but of course, there are multiple thoughts about this, but also something that this bill would do would require more transparency and also from opioids, and there's also a modernization initiative in March that is trying to also increase transparency, and that's separate from the bill that will also hopefully help lead to less problems and this system just running better.

Nancy Solomon: Now, let's talk a little more about, you raised the question about disparate treatment for people of color. Of course, this is an issue that's come up a lot in all kinds of healthcare issues where we see racial disparities. Tell us a little more about what the concerns advocates have raised for transplant waiting lists.

Julia Métraux: Some research has shown that despite Black people more likely to go into kidney failure, they're less likely to be put on waiting lists than white people. A lot of this research is not just advocates saying there are numbers to back this up, but of course, listening to people with lived experience is crucial, is that-- That comes from doctors not recommending Black people to go on that list, so that, of course, needs to change, and that's not going to be fixed with the bill. That comes with doctors learning to treat Black patients better. Also, like I previously mentioned, regarding kidney testing, I shouldn't say it's surprising because so much of this country, we learn how systemic racism is really deep in medicine.

Hopefully, the system will start to change. It's hard to explain science-wise, but the way that it was previously done, Black people's kidney functions were being measured differently than other people's, which put them later on in the waiting list, and that's a problem, too. Because there also comes a point when someone might be too sick, even for an organ transplant. Getting Black people at almost the back of the line, it's just so hurtful. Part of the changes made in December is that there has to be some accountability in improving the waitlist, not just for how Black people with kidney functions are measured in the future when it comes to where they're put on the transplant list, but looking how it's been done historically for people who are currently still waiting.

Nancy Solomon: Let's take another call. We have Anthony in Princeton, New Jersey on the line. Hi, Anthony.

Anthony: Hello.

Nancy Solomon: Hi.

Anthony: Hey, how are you?

Nancy Solomon: Good.

Anthony: I just want to make a few comments, maybe a question. Respectfully, I think Julia is convoluting the issues between allocation through the OPTN and procurement. What I mean by that I think it's important to know that actually the US is the gold standard for procurement and transplantation internationally. There's really two types of procurement and transplantation in this world. One is through presumed consent, which is a model for Western Europe where the state takes over your body upon death for donation. In the United States, that culturally is not unacceptable.

We have informed consent, and just what we do through curriculum and through society is we educate our residents to do the right thing. It's criticism like this that works against the ability to continue that education and enhances skepticism. It really is a disservice. Basically, Julia mentioned that she referenced the Senate Finance Committee. The Senate Finance Committee hearings were really an affront based on non-scientific, non-evidence-based testing that was funded by Silicon Valley entrepreneurs who basically had Bridgespan and Bloom Works produced studies that had conclusions that they were looking for.

Nancy Solomon: This stuff is pretty hard to follow, but let's go back to your original point because I think that's something Julia could address, and then we'll talk about the bill in Congress. I understand that criticism. Right, Julia? That you, by calling out and giving attention to the problems in the system, it could discourage people from donating. I'm not sure that's a reason not to show the problems in the system, but do you want to respond to that?

Julia Métraux: Yes, I'd be happy to respond to that. There is one thing I do want to highlight. One of the things highlighted in that Congress committee, and I know that there was some disagreements over some of the sources raised, is that there was a 2022 report by the National Academies of Sciences, Engineering and Medicine, which showed that the rate of unused viable organs is rising. That is a pretty, I guess to say, trusted source. I do think that, sure, maybe there are arguments against opt-in versus opt-out, but that doesn't mean that systems can be better. Any system improvement that stops people from dying is good, and I-- [crosstalk]

Nancy Solomon: It seems like a good goal.

Julia Métraux: Yes. Just like any improvement, it's good. There's nothing that's perfect. There is no country that does it perfectly, but things could be a lot better. There's something I briefly mentioned toward the end of my article is Medicare doesn't want to cover a lot of surveillance testing which is also a problem for people post-transplant. There are many issues within the system that needs a lot of reform and can be done a lot better because patients deserve it.

Nancy Solomon: Tell us about the bipartisan bill. If I understand correctly, it's now sitting on Biden's desk ready to be signed. Tell us, what kind of changes would this bring to the whole organ transplant system overall?

Julia Métraux: This passed the House and Senate in late July, and Biden, the next person to sign it, there doesn't seem to be any analysis that suggests that he won't. The biggest thing that this bill would do was give more contracts towards managing the system. The non-profit we had talked about had to actually put out a message that seems like they're not totally against it, but that could of course just be a message that they're putting out. Also, leading to some more accountability regarding how finances in the system in the past have been used. Like I also previously mentioned, there is also a modernization initiative, which will hopefully lead to more transparency as well.

Nancy Solomon: Are there things left to do that the bill doesn't cover that advocates recommend needs to happen to fully repair the system?

Julia Métraux: Yes, there's a lot. I forget his name, but the person who briefly spoke about the need for people who are organ donors to get a post-transplant care, that is something that needs to be done. Just to encourage people to do that. There's also needs to be more accountability for who gets organ donors. There's, of course, still questions about why certain opioids who are underperforming have been getting re-certified. That's not really the question for the non-profit, it is for the federal government, but there just hopefully will be changes slowly that will make the system work better.

Nancy Solomon: Well, thanks so much for your reporting on this. It really is a window into a world that many of us just have no idea about. Very interesting stuff. Julia Métraux is a fellow at Mother Jones covering disability and public health. Thanks so much for joining us, Julia.

Julia Métraux: Thank you so much for having me to speak about this very complex but important issue.

Nancy Solomon: Thank you.

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