Would You Give Up Your Kidney for $50,000?

Photo of author

By admin


Subscribe here: Apple Podcasts | Spotify | YouTube | Overcast | Pocket Casts

Kidney disease is the eighth-leading cause of death in the United States. Since 1998, more than 100,000 Americans have died while on a kidney waiting list. And by 2030, more than 1 million people are projected to be suffering from kidney failure.

The cure for kidney failure is a new kidney. But finding a donor kidney is an arduous process. After all, it’s a lot to ask—the testing and screening before a donation, a surgery, and then the recovery. Most donor kidneys come from friends and family; just a small number come from altruistic donors. And despite advancements in making the surgery safer and research showing that the risks are minimal, unsurprisingly very few people are willing to take that step.

In most situations where an important good is in short supply, prices go up, spurring more production. But it’s illegal to provide compensation for kidneys in the United States. Sometimes donors can get assistance with covering lost wages or travel, but that doesn’t come close to compensating people for the time, pain, and risks associated with kidney donation.

On today’s episode of Good on Paper, I’m joined by the Vox senior correspondent Dylan Matthews. Matthews himself donated a kidney to a stranger in 2016, after his research and writing on the issue led him to believe the risks were minimal and the potential benefit to a recipient was great. He’s reporting on—and arguing for the passage of—the End Kidney Deaths Act, which would provide $50,000 in fully refundable tax credits to kidney donors.

“You go into a hospital. You do something that is physically strenuous. You take time and effort out of your life to save someone’s life, and then you get nothing for it,” he told me. “Your surgeon gets something for it. Nurses get something for it. Everyone else—and it drives me particularly crazy when I hear transplant surgeons talk about how it undermines the altruism of the gift to compensate it. You’re making $200,000 a year, and you’re going to lecture me about how it undermines the altruism to get paid a few tens of thousands of dollars for saving someone’s life? Like, Go to hell.”


The following is a transcript of the episode:

[Music]

Jerusalem Demsas: Would you give up your kidney for $50,000?

Selling body parts isn’t the sort of feel-good policy we usually get into here at Good on Paper, but here we are.

I’m bringing this up for good reason. In 2022, about 12 people in need of a kidney transplant died every day. And currently, more than 90,000 Americans are waiting for a kidney transplant.

Dialysis, the runner-up treatment for kidney failure, is a poor substitute for a transplant. You’re more likely to die or experience what’s called a “cardiovascular event.” Not to mention the various quality-of-life issues that come with having to go to the hospital or another treatment center all the time to get your blood processed.

But there are simply not enough kidneys to go around. Even though most of us have one to spare, kidney donation is uncommon. And it’s easy to understand why. It requires months of planning and medical testing, a painful surgery, and recovery. It’s a lot.

Well, in 2016, my friend Dylan Matthews, a reporter for Vox, became one of 5,633 people in the United States to donate a kidney that year. But unlike the vast majority of those people, Dylan didn’t do this for a family member or a friend. He’s one of a small set of people who donated his kidney in a “nondirected” way. To a stranger.

And while he didn’t get paid, he’s recently written about a bill to make the U.S. one of the first countries in the world to pay kidney donors for their efforts—$50,000.

[Music]

This is Good on Paper, a policy show that questions what we really know about popular narratives. I’m your host, Jerusalem Demsas. And today we’re going to talk about whether markets in organ donation are a good idea. Many people—and particularly those who work in the field of bioethics—are apprehensive about the idea of commercializing organ donation. There’s fear of denigrating the human body, of coercing low-income people into taking on a dangerous surgery, and of undermining altruistic donation.

I’ve invited Dylan on the show to talk about this idea, and about why paying people for their kidneys might be less controversial than it sounds.

Dylan, welcome to the show!

Dylan Matthews: It’s so good to be here.

Demsas: So we’re here because you have donated your kidney and proved that you are better than me, who has not donated my kidney. And you’re here to convince me why I should also donate my kidney. Is that correct?

Matthews: That is one read on what we’re doing here. I’m happy to try to give you my best sell. I did donate my kidney eight years ago. I have been dining out on it ever since. But I’m a big evangelist for it, and think it is more attainable than most people think it is.

Demsas: I want to start with trying to understand why kidney donation is so central to this conversation about organ needs in the United States and in the world generally. What are the stakes here? Why are kidneys in such high demand?

Matthews: Sure. I don’t know metaphysically why this is the case, but most organs that people need are kidneys. So if you go through the waiting list that’s administered nationally in the U.S., there’s about, I think, 106,000 people on the list total. Of those, 84 percent just need a kidney. Some people need a kidney and something else. I think the second-biggest category is liver. There’s heart, lungs, whatever. But 84 percent is a pretty overwhelming majority. The big, big share of people who are waiting for an organ are waiting for a kidney.

There are a bunch of things that can lead to what’s technically called end-stage renal disease. More colloquially, it’s just called kidney failure. You can have polycystic kidney disease, which is a genetic condition that sort of manifests at some point. It’s a complication from diabetes as you get older. There’s just a lot of different factors that all put stress on your kidneys and can lead both of them to fail at some point in your life. And the best possible treatment for that is to get a kidney transplant.

So one way this manifests is that if you’re waiting for an organ, you’re going to wait longer for a kidney. That, I think, depending on how healthy you are and your condition, is not uncommon to wait over three years. If you go through people who get transplants for kidneys, I think about a quarter of them waited three or more years for it. Most of them wait longer than a year. For every other organ, the reverse is true: The majority of people get an organ within a year. And there’s generally sufficient supply. I don’t mean to say there are no problems. There’s definitely issues with donation for heart and lung and things that could go better. But the demand is overwhelmingly in the kidney side of things.

Demsas: This is something you told me earlier, but less than 1 percent of all deaths are eligible for kidney donation. Is there something about the kidneys that makes it harder to retrieve them at death?

Matthews: That’s a stat for organ donation, generally.

Demsas: Okay.

Matthews: And I think this is something that I did not know before donating and that I think, when I talk to most people about this, people don’t realize: Yeah, to get your organs from a deceased donor to a point where they can be transplanted, a lot of things have to be true.

So in the U.S., generally, organs for people who die when they’re 75 or older, are not transplanted, because of presumed medical problems. You have to die in a hospital. Most people don’t die in a hospital. A lot of people die in nursing homes or at home. You have to be on a ventilator. You have to not have certain contraindications, like multiple organ failure. Or we can now transplant from people who are HIV positive, but that’s not people’s first choice.

So there’s all these contraindications, and there have been a bunch of studies going through all deaths in the U.S. and trying to narrow down by each of these selection criteria. And once you funnel it down like that, you get to, I think, 0.96 percent of all deaths typically are of a kind where you can donate. And I think about half of those are brain deaths—people who are still breathing but don’t have brain functioning. And about half are cardiac deaths. And so people’s hearts aren’t beating. They aren’t breathing.

Demsas: Mm-hmm.

And so you donated your kidney in August of 2016. I wonder—when I think about kidney donation, it seems like a very intense surgery. And can you talk to us if you had any doubts when you were deciding to do this?

Matthews: I had been thinking about doing it for maybe five or six years by the time I actually did it. So my doubts were close to gone. I had done a lot of research into it. I had had friends who’d done it. You and I have a mutual friend, Alexander Berger, who I had talked to about doing it. I had another friend in D.C. who had done it.

And so from talking about their experiences, they didn’t sugarcoat it. They’re like, It’s hard, and it’s painful, and the first week afterwards is gonna suck. But you will get over it. And I met both of them well after they had donated and could see that they had no chronic health problems and were doing perfectly fine.

So I was a little nervous about it, and I think I really do not like being a burden to people. And so I think the thing I was most nervous about was that my now-wife, then-girlfriend, was taking time off work to help me, and my dad was flying down. And I felt nervous about imposing on them. But I’d read the studies, and I knew this was a safe procedure, and so I felt pretty good going into it.

Demsas: Well, let’s dive into how safe it is, right? You’ve talked about some of the risks of the procedure. Obviously, some of them are just, like, the pain. Any kind of intensive surgery comes with some associated risks. What do we know about the risk of donating your kidney on your own health?

Matthews: Sure. I would split it into acute risks and chronic risks—short term or long term. So the short-term risk: Any time you get put under for major surgery, there’s a chance something goes wrong, and there’s a nonzero risk of death. For kidney donation in the U.S.—there was a new study just crunching the numbers on this—the risk is now under 1 in 10,000. For context, that’s like the homicide rate in a really safe city and well below rates of mortality in childbirth, which are too high. There’s one thing to take away from that. But it’s well within the scope of risks that people take on for medical procedures. And it’s been going down pretty rapidly.

When I got my surgery, the number that they quoted me was 3 in 10,000, rather than 1 in 10,000. So we’ve been getting better at this. The surgery has been getting safer. The surgery has been getting less invasive. My uncle donated a kidney in the ’80s, and they fully cut open his abdomen, and he has a scar going up across his entire belly. I had a laparoscopic surgery, which is when they make small incisions and put a camera in and do it with very fine instruments. And so my recovery was a lot easier than his, and it was a lot less invasive and risky because they were just cutting you open to a much lesser degree. So that’s the short-term stuff.

Long term, the last numbers I saw in this is that you do have a significantly elevated risk of getting kidney failure yourself. But in the overall American population, about 3 percent of people will have kidney failure at some point in their lives. Among kidney donors, it’s about 1 percent. In that first glance, that looks like, actually, you have a lower risk. But kidney donors are a very weirdly selected group. You are healthier overall than most of the general population.

And so if you do a matched comparison to people who are similarly healthy but didn’t donate, they have a lifetime risk of, like, a third of a percent. So on the one hand, your risk goes up three times. That’s not nothing. On the other hand, it goes up to 1 percent, and you have a 99 percent chance of this not being an issue for you at all.

And also, there is something called the voucher program that the National Kidney Registry runs, which gives you advantage in getting a kidney for yourself, should you need one later because you donated.

So taking all that into account, the main thing I was worried about were the longer-term risks. I decided I could live with them, especially if I got expedited access to a transplant if I needed it. And I think that’s still true, and I think it’s also true that the risks are getting lower as time goes on and medicine improves.

Demsas: Yeah. And I think you’ve actually overstated the risk to healthy people here. You said the lifetime risk was about a third of a percent. The National Kidney Registry cites a 2015 study, showing the lifetime risk of kidney failure for a donor is a little under a percent, like you said. But for a healthy non-donor is only about a seventh of a percent. There’s obviously a difference there, but it is very, very small. It’s even smaller than you thought.

But it’s important to note that this is a very selected group of people that’s being studied when we’re looking at health outcomes for kidney donors. When you say, You don’t see a lot of death. You don’t see a lot of mortality risk, that’s when we’re keeping it really contained to the few thousand people who are opting in and passing all of these screenings to make sure that you’re really healthy and aren’t taking on significant risks. And anyone who has fears about their health is either going to self-select out or is going to be weeded out in that system.

Matthews: And it’s an onerous testing process. I think I went through six months of blood tests. There was a day where I had to collect everything I peed for the day. They gave me a jug. And I got drinks with a friend, and I was like, Can I walk from my apartment in Dupont Circle to Logan Circle, have drinks with a friend, and go back in time to collect the inevitable pee from getting drinks with my friend? (Laughs.)

Demsas: Did you make it?

Matthews: And I did. I made it. I made it.

Demsas: Wow. We’re all proud.

Matthews: Thank you so much. And so, yeah. That weeds out a lot of people.

Demsas: But is the onerous testing for your benefit? Or to make sure the kidney that you eventually donate does not mess up the other person who’s getting the kidney?

Matthews: I think it’s a mix of the two. So one is they want to make sure that you’re not—especially if you were, like me, a nondirected donor, so you weren’t directly donating to a family member or something. They wanted to be sure that you didn’t have any contraindications that meant that losing a kidney would probably be especially bad for you—if you had existing kidney damage, if your kidneys were not filtering blood the way they should be already.

So some of it was that. But then some of it was: There are these certain antigens that the human body uses that are sort of particular to people to tell what is your body from what is not your body. There are these little proteins around our cells. And I don’t know that they’re absolutely unique, like snowflakes, but they’re used by the immune system to say, This is part of Dylan. This is not part of Dylan. And if your antigens are something that your recipient has built up antibodies to—which can happen through viral infections and all kinds of reasons—

Demsas: It’ll reject the kidney.

Matthews: It’ll reject the kidney. It’ll be really, really bad. And so a lot of it is collecting that information and making sure that when they do a match, there isn’t a conflict like that.

Demsas: Just to put a couple numbers on the board for what you’re talking about: The National Kidney Foundation says that the typical wait for a kidney donor in 2015 was 145 days. And that sounds like a long time until you hear that the number for other people was over 1,600 days. It’s possible that you might have to be on dialysis anyway, but it does seem that it is a very strong benefit in your favor if you ever do need a kidney.

Obviously, neither of us are doctors. People should talk to their doctors if they’re interested in doing this.

But it seems like there’s also a lot of heterogeneous effects based on subpopulations too. It’s interesting. It seems like it’s worse for men on average, but the risks to women who will become pregnant are also significant.

Matthews: Yes. I’m glad you brought that up, since that’s the third category of risk that I didn’t mention—in part because it was not relevant for me. But there’s immediate surgical mortality. There’s kidney failure later in life. And among women who’ve donated kidneys and then gone onto become pregnant and give birth, the rate of preeclampsia—so hypertension, high blood sugar, or high blood pressure—

Demsas: Pressure. Yeah.

Matthews: Yeah. Again, we’re not doctors. (Laughs.)

Demsas: (Laughs.)

Matthews: High blood pressure while pregnant is higher if you’ve previously donated. So I know a lot of women who wait until they’re done having kids to donate or, at the very least, are cognizant of that as a potential risk factor.

The other hard thing is that if you donate, afterwards, one of the things you’re not supposed to do is lift heavy objects. So if you have a toddler, that’s a really hard rule. I think it’s definitely trickier for people with uteruses than people without. But even there, it’s a risk among others. I know women who’ve looked at that and thought, I still think this is a good thing to do, and I’m willing to take the risk.

Demsas: Something you wrote one time was—and I don’t have the quote in front of you, so I’m going to just paraphrase it—but you wrote that everyone involved in your kidney donation got paid except for you. The doctor got paid. The nurses got paid. The lab techs got paid. But you, the donor, were asked to do it just out of the goodness of your heart. So can you help us understand the out-of-pocket expenses that went into this for you?

Matthews: Sure. And I should say that my recipient did not get paid, but they did get a kidney. So they got something of significant value.

My donation, for me, was cheaper than usual, in that I was working then, as now, at Vox Media. Vox gave me medical leave for this, and so I didn’t lose wages. A lot of people who donate who are working hourly or don’t have paid vacation—taking time off work, lost wages is a very significant expense.

There were some transit costs just because I donated in Baltimore, and I live in D.C. I didn’t want to deal with the train home, and so I got an Uber, and that was expensive. The bigger thing was lodging and transit for family members. You don’t really want to be in a hospital for a week alone. And my dad flew down from New Hampshire and stayed in a hotel. Hannah got a hotel room, as well.

Demsas: Hannah, your partner.

Matthews: My partner. Yeah.

So I think those are all very significant things. And then, if you’re thinking about things that disincentivize people to donate, there are those literal costs that will show up on your personal budget. And then, economists often like to think about the dollar value of health risks: What is the amount that you have to pay someone to go be a logger, knowing that being a logger is dangerous?

And so I think there are some real disincentives just in knowing that there are significant health risks in that. And depending on how you evaluate that, that can be thousands to tens of thousands of dollars’ worth of risks that you’re undertaking. And so people who’ve tried to quantify the total amount of disincentives get a number around $40,000 or $50,000 per donation.

Demsas: And that’s to make you whole. That’s not to actually pay you extra.

Matthews: Right. That’s not to go above and actively incentivize.

And there are some tools to deal with this. There’s something called the National Living Donor [Assistance] Center, NLDAC. And they will reimburse some things, like lost wages and travel expenses, but currently they have this bizarre policy where it’s limited based on the income of the recipient. So if you’re a donor, and you are not rich, but you are donating to a random person, and that person turns out to have a lot of money, you don’t get reimbursed, which makes no sense. And there’s currently a good bill in Congress to try to fix this. All of which is to say You cannot reliably get reimbursed for these expenses if you’re donating right now.

Demsas: So this is a very rare thing to do. In 2023, just 407 people donated a kidney to a stranger. Before we get into the policy stuff that we want to talk about, why did you do this?

Matthews: Why did I do this? I heard that it was a thing you could do. I read a piece by Larissa MacFarquhar in The New Yorker. I’m sorry to name an Atlantic competitor, but she wrote a great piece called “The Kindest Cut” about people who donate to strangers and about people’s aversion to them and thinking this is creepy or threatening. And I thought that was an interesting angle on it.

Demsas: People thought it was creepy to donate your kidney?

Matthews: Yeah. I think in that it—she expresses this more artfully than I can—but that it seems so extreme that there has to be a catch. It doesn’t fit people’s model of how the world works, that someone would just give a kidney away. And so, They must have some nefarious motive for this.

And so I read that piece, and I thought, Well, I don’t think these people are creepy. And I think they did something pretty good. And I looked into it and saw that getting a living-donor kidney extends your life significantly more than a deceased-donor kidney. It has a much better quality of life than if you’re still on dialysis, which typically leaves you homebound. It means you can’t work, and—

Demsas: Dialysis is a treatment for kidney failure if you don’t get a kidney.

Matthews: Right. Right. You’re hooked up to a machine that filters your blood the way a kidney would, but it takes a lot of time. It’s very physically draining.

Demsas: And it’s not as effective.

Matthews: It’s not as effective. It’s associated with significantly shorter life. So yeah. It seemed like there’s a very small risk to me and a very significant benefit to someone else. So why shouldn’t I do it?

[Music]

Demsas: All right. After the break, Dylan makes the case for getting paid for your kidney.

[Break]

Demsas: It’s clear that the altruistic donation, like yours, is not going to come anywhere near meeting the demand, right? We’re talking about a few hundred people a year making that sort of decision. But you’ve come out in support of something that might help do this that sounds pretty controversial, which is that we should be able to pay people for their body parts. Or, more specifically, that you should be able to pay people for donating their kidneys.

This feels like it flies in the face of common moral intuitions. Can you inhabit the position of someone who might find this icky and tell us why they would feel that way?

Matthews: Sure. So we’re starting off with me playing devil’s advocate against the position that I hold.

Demsas: Yes.

Matthews: Is that how we’re doing this?

Demsas: Yes. That’s exactly how we’re starting. Yeah.

Matthews: (Laughs.) To be clear about what the position is out front, I’m not saying that people should be able to just buy each other’s kidneys. The proposal, which is an actual bill called the End Kidney Deaths Act, would create a tax credit. It is fully refundable of $10,000 a year for five years for people who donate.

So it is not a transaction. It’s not people buying kidneys from each other. It is compensation from the government for having donated. It’s not a market in kidneys. No one’s buying each other’s kidneys. Rich people don’t get access to kidneys before poor people. I just feel like that’s very important to say up front.

I think if I’m inhabiting the position of someone who finds this icky, you immediately get into a headspace of worrying that this will exploit poor people who are desperate and will be more likely to donate their kidney if there’s compensation, and that they might not truly want to do this but are only doing this for money. And that’s morally problematic. And I could also imagine a concern that there is an illicit trade in organs internationally and, Will this weaken our ability to fight that?

I want to be clear that I don’t think either of these are good or even particularly coherent arguments, but these are the common arguments that you hear.

Demsas: But even before then, there’s a sense of—and you can take it to a logical extreme of: We have senses around the dignity of a human being, and that we wouldn’t allow, for instance, someone to sell themselves into slavery. We would find it a little bit concerning if someone was able to buy a heart from someone else, even if they fully consented, even if that person was rich, even if it wasn’t a poor person being exploited. Someone wants to sell their heart, for whatever reason—we wouldn’t allow that kind of thing to exist.

Matthews: We do have laws against murder.

Demsas: We do. No, but not even just murder. Like, if you were to say, willingly, for whatever reason, that you chose to do that, and you were found competent. My point is: The reasons for not allowing this often have to do with our senses of what sorts of things feel outside the bounds of moral reasonableness, and they’re not often actually easily articulable. Like, even now, I’m struggling to do this. And I’ve read people who talk about this issue who are concerned about allowing for compensation for organ donation and kidney donation, and they often struggle to fully articulate this.

But they do seem to be touching on something that many people, I think, find resonant, which is that there’s this concern that this shouldn’t be commercialized, that this part of your body should not be something that can be marketed and given away for money. And I understand that you’re supporting a very specific bill here, but do you find that to be at all something that resonates with you?

Matthews: No.

Demsas: Yeah.

Matthews: I mean, I could lie and say that I find it—we’re all part of life’s rich tapestry and that I don’t find this to be metaphysical bullshit that people come up with when they don’t actually have arguments for things. But no. I mean, what work is, is that you are giving of your body to perform a service in return for compensation. And, as you say, I think people have certain intuitions about the things that should be outside the bounds of the market.

A lot of people feel like sex work should be outside the bounds of the market, that performing sex acts on somebody should be given freely and not with any compensation, and that it is degrading to the act. And I think there are a lot of actual sex workers who say that that is incredibly insulting and denies them their personal autonomy.

And I think this is a similar but higher-stakes version of that, in that it is extremely life and death. I think our decision to not allow any compensation for kidney donors has resulted in the deaths of, conservatively, hundreds of thousands—but probably millions—of people since the 1980s, when kidney transplantation became reliable and doable on an ongoing basis.

And so if you’re going to be killing millions of people, I think you need a really good answer for why you’re doing that. And it needs to be a better answer than, It makes me feel icky. This metaphor of buying kidneys—which, again, is just a metaphor—I prefer to think of it as paying donors for our work, because it’s work. You go into a hospital. You do something that is physically strenuous. You take time and effort out of your life to save someone’s life, and then you get nothing for it. Your surgeon gets something for it. Nurses get something for it. Everyone else—and it drives me particularly crazy when I hear transplant surgeons talk about how it undermines the altruism of the gift to compensate it. You’re making $200,000 a year, and you’re going to lecture me about how it undermines the altruism to get paid a few tens of thousands of dollars for saving someone’s life? Like, Go to hell.

Demsas: Well, I don’t want us to stick on, I think, the weakest version of this argument, because you are saying that this is not the one that you find anywhere near compelling. But the one that you find the most compelling is this idea about coercion. This is the one that kind of gets me. And before I even get into this, are you saying that you would not support a bill allowing for even the regulated sale of organs?

Matthews: No. I don’t think peer-to-peer organ sales is a good idea. Iran has a system sort of like that, where donors get some compensation from the government of Iran, which is meant to be reimbursing them for costs of donation. And then nonprofits will broker deals between recipients and donors as to side payments. I think, if you put a gun to my head and said, We can have the U.S. system, or we can have the Iran system, we should absolutely have the Iran system because it supplies many more organs to people who need them.

But it’s not a great system. And it leads to organs going to richer people. It really concentrates donation among lower classes and people who are desperate for money. It has all the problems of unregulated capitalism that you would expect, and I’m not a hardcore enough libertarian to say, You have a right to your body. You should be able to sell it person-to-person if you want to. I don’t think kidneys should be allocated based on ability to pay, is one way to put it.

Demsas: But even with the system where the government is compensating you, there’s obviously greater incentive for someone who is financially struggling to take advantage of that. It’s a fully refundable tax credit. Correct me if I’m wrong: You get $10,000 a year for five years when you file your taxes if you are certified as having donated your kidney. And so that’s a lot of money to a lot of people. That’s not insignificant. I know you mentioned that that’s the amount that some researchers have priced the costs of kidney donation, too, so it’s not actually compensating you if you take into account all of the costs that have to do with kidney donation.

But I know people who donated plasma or donated blood in order to make money, some people I know who’ve considered donating their eggs. I know people who’ve donated their sperm in order to make money when they were in a financially risky place. Other than the egg donation, plasma donation is quite painful, but blood and sperm donation is not that bad and does not come with, really, any associated risks.

So would you be concerned if this system went into place, and you saw a lot of significantly poor people choosing to opt into this and potentially expressing regret after having done so?

Matthews: No. I think one way of phrasing that question is, Would I be concerned if distribution of this tax credit is such that it mostly helps poor people? And no. I would not be concerned if it mostly helps poor people. I think there’s a lot embedded in these fears that I find disturbing.

First, let’s talk about plasma. A lot of countries ban compensation for plasma. The U.K. does. Australia does. What happens in those places is not that people freely give plasma, and then that is used for these therapeutic purposes that plasma is used for. What happens is they import plasma from the U.S. and Germany, which actually do pay people for plasma, because there is no way to meet market demand for plasma without compensating people. And so (A) there’s a degree of hypocrisy. Yes, you can ban it, but then you will just shift this market somewhere else.

But also, if you interview people who are selling plasma, they’re not in a great place. But would they be better off if they didn’t have this option? Would they be better off not being able to pay their bills, because they did not have this form of compensation in their lives? I don’t—

Demsas: But just to steelman this, obviously you believe in certain kinds of workplace protections.

Matthews: Of course.

Demsas: Yeah. Exactly. Do you agree with the idea that you would not allow any sort of labor to exist insofar as it helps poor people get more money?

Matthews: Sure. There’s some minimum, but a thing that is nonlethal and not a long-term significant health risk and that provides money to poor people on a reliable basis and serves a vital health need does not strike me as a particularly hard case. I think that the plasma case—the evidence is just overwhelming that we need to be compensating people for plasma, and there’s no other viable method. And I think if you do ethnographies of and talk to people involved in these markets, they are grateful that the markets exist.

In terms of the kidney thing, part of what gets me about this is: Because I have donated, I don’t have this mystical idea that it’s the ultimate violation to lose your kidney. Since that’s the motivation here, right? This kind of body-horror idea of—

Demsas: But also, there’s significant pain. I mean, you write about this yourself.

Matthews: Sure.

Demsas: There’s significant pain in the aftermath. You talk about this in your own article, about how it’s hard to walk around, that obviously some of the studies have difficulty, as well, quantifying the sorts of complications that are going to arise to go into your doctor—whether it’s abdominal pain or it’s other kind of gastro issues people might face. There’s things that are harmful that cause you—

Matthews: But, like, you eat strawberries.

Demsas: (Laughs.) I don’t know where that’s going.

Matthews: Have you ever gone picking strawberries?

Demsas: Yes.

Matthews: Have you ever tried to fill a whole thing of straw—it’s horrible back pain. That is so much worse than my week after kidney surgery—the times I have tried to, like, pick fruit from the ground.

Demsas: So farmworking, you’re saying—we allow that.

Matthews: We allow—we depend on it. We don’t just allow it. It’s the basis for our entire civilization. We allow firefighters. We allow loggers. We allow fishermen. We allow small-plane pilots. Death rates for small-plane pilots are crazy. Death rates for roofers are crazy—way higher than anything remotely close to kidney donation.

Am I sympathetic to the idea that, yeah, some people are going to endure some level of pain and then get $50,000? Do I recoil in horror from that? No. It’s life. Life is full of tradeoffs. And in some ways, I find it more offensive to rely on people donating without any compensation, enduring that pain, and not gain anything in return. That’s exploitation.

Demsas: You are opposed, as you mentioned, to the Iran system of just allowing people to sell their kidneys. In that system, 76 percent of individuals donating a kidney are impoverished. Obviously, it’s a very different country than the United States where Iran is routinely imprisoning debtors, and so there’s a huge incentive to make that up.

Even in that system, there’s a survey that I’m dubious on the methodological quality of. They have 100 people they survey in this study, and they find that 76 percent think that kidney sales should be banned, and if there was another chance, they would prefer to have begged—40 percent of people say that—or obtain a loan. Sixty percent of people say that.

So would you be surprised if there were high rates of regret in a system where, in the United States, the End Kidney Deaths Act passes, and you have significantly more low-income people choosing to opt into it. Would you be surprised by regret rates being pretty high?

Matthews: I would probably be somewhat surprised because, again, we are nothing like Iran in many important ways. We have much better post-op treatment. I would imagine that outcomes for living donors, in terms of health, are much better. They’ve been pretty good in Iran in most of the literature. So I’d be surprised if it looks exactly like that.

Will I expect there to be some regret? Sure. I think it’s an insane standard to say that no one can regret having done this at all, at the end of it. It’s human life. People are going to regret some of the decisions they made. You have to look at it as a system, as opposed to as sort of a collection of anecdota. I think the result, if you enacted this policy, is the number of nondirected donors would go from 400 to easily in the thousands, maybe in the tens of thousands, every year.

This is a population, by the way, that is disproportionately economically disadvantaged. Rates of kidney failure are much higher among Black Americans. It is negatively socioeconomically associated, in part because it’s connected to things like obesity and type 2 diabetes. So tens of thousands of those people will have their lives saved. And, in exchange, a large population of people that might be disproportionately low income will get very significant grants of money from the federal government in amounts that could change their lives. Do I think some of them at the end will be like, Yeah. I wish I hadn’t done that? Sure. Do I think that bears, really, on whether this is a good system? No.

I think the question is, How much does it raise transplant rates? Does it get to a point where the market clears, and everyone who needs a kidney gets one? Do people get the money in a prompt way? And, Does this crowd out other kinds of donation? would be my main concern.

Demsas: Wait. Talk to us about that. What do you mean “crowding out other types of donation”?

Matthews: I want to be careful here because living donation is so much better than deceased donation that, in the limit, if you had enough living donors to cover everybody, we just shouldn’t have deceased donation of kidneys at all. But before we hit that limit, you could imagine it reducing pressure on organ-procurement organizations, which collect organs from deceased people, to collect if they feel like there’s this other market.

So this is something that happened in Iran, is that there seemed to be some downward pressure on deceased donation as a result of a legal market in living donation. I don’t know how much that would happen in the U.S. I think it’s worth keeping an eye on.

Demsas: You mentioned this a couple of times, but that there’s no other way to resolve this shortage other than making it possible to compensate kidney donation. I want to talk about why that is, why there aren’t other policy tools.

One thing that’s been suggested is having an opt-out system at death for organ donation, right? So instead of right now, you have the DMV, and they ask you, Hey. You want to be an organ donor? And they put a little heart in your—at least, on D.C. ones; I don’t know if everyone gets that little heart—but you get a heart on that. Obviously, you’ve said that it’s not as good, but why wouldn’t an opt-out system give us tons more kidneys available to be used for this purpose?

Matthews: Sure. For one thing, there’s been a lot of research on opt-out and opt-in systems. The best that I’ve seen on this found no effect. It doesn’t seem to work or increase a deceased-donor donation at all.

Demsas: How could that be? What’s happening?

Matthews: Well, what’s happening is that when someone dies, what happens is that the doctor asks their family what they want to happen to the organs. The only circumstance in which what it says on your card is relevant is where a member of your family is not there and cannot be accessed. And people have done studies to try to figure out what share of deaths are like that. Or, like, you alone—there’s no family members. They have to go by what’s on the card. And it’s maybe 5 percent of deaths, so it would be crazy if it could have an effect.

It’s one of those things that sounds really fun and nudgy, and, like, one neat, little trick to increase access to organs. It does not seem to do much of anything. More broadly, not enough people die in ways that are compatible with organ donation to make up our need for kidneys. So we need about 93,000 kidneys a year in the U.S., given current rates of kidney failure. And I think about 30,000 people die a year in ways that are compatible with deceased-donor donation. So 30,000 people—that’s 60,000 kidneys. If you got every single one of those, you’re two-thirds of the way there, but you still have tens of thousands of people dying unnecessarily because they don’t have access to kidneys.

Demsas: Mm-hmm.

Matthews: For the record, we’re nowhere near the limit there. We have about 15,000 dead people being used for organ donation in 2022. About 20,000 kidneys, since a bunch of them died and had other organs taken but not kidneys, for whatever reason. So 20,000—maybe you can get that to 60,000, in the limit, by encouraging more people, more families to accept donation, by trying to increase the take-up by these organ-procurement organizations that are in charge of that stage of things.

And that’s all good stuff. It’s just not going to get you there. It doesn’t add up. You need living donation. And again, living organs last longer and make you healthier than deceased-donor organs, which makes sense.

Demsas: Yeah. I find a lot of what you said very compelling. That’s part of why I invited you on the show. But why do you think that basically no countries have pursued this policy path? If all these arguments are so compelling, what has been restraining that policy change?

Matthews: I think some of it is that it’s easy to forget just how new a technology transplantation is. The first successful organ transplant was a kidney transplant between identical twins in the 1950s. Like, my mom was alive then. We’re not talking ancient history. For a couple of decades after that, you had really high rejection rates, until we got modern immunosuppressant drugs that meant that recipients could reliably get organs and have them take.

So in 1984, which is when the U.S. first regulated organ transplants, it was still a new technology. It’s kind of like Congress regulating AI now. It was a very cutting-edge thing that young Congressman Al Gore decided he wanted to cut his teeth on writing legislation about. And so I think some of the lack of variability is due to that—that we’ve had 40 years, and 40 years is not a lot of time.

And countries are relatively small-c conservative. They don’t like to be outliers on certain policies. And there’s been a lot of consensus among bioethicists and physicians against doing this. I blame the late British sociologist Richard Titmuss a lot for this.

Demsas: Say more.

Matthews: He wrote a book called The Gift Relationship, where his central argument was that when Britain experimented with paying for blood donation, they got fewer blood donors than when it was purely voluntary, and so it wouldn’t work to compensate people, and it would crowd out altruism if you compensated people for blood. And people drew the analogy from that to kidneys.

And (A) subsequent research shows that’s not true at all for blood. And (B) where it is true, it’s maybe true in very small amounts of compensation. Maybe if you would donate blood for free, but they offer you a dollar, you won’t do it, ’cause, like, that’s weird. But we’re talking about $50,000. But it was very influential among a certain class of physicians who wound up making international policy and having conferences to discuss this and coming to a consensus around it.

Demsas: It’s funny. When I first started looking into this, I assumed that the dominant position that people had was that they would be offended at the idea of organ sales or compensating people for their kidneys. There is one really good study published in the American Economic Review in 2019 where they look at over 2,600 U.S. residents and find that, across a variety of conditions, an average of 57 percent of respondents supported a paid-donor system, and 70 percent did it if the system was “assumed to satisfy 100 percent of demand.” Was that surprising to you when you first heard it?

Matthews: It was. But I think, as I followed this more and got more into it, it became less surprising. I think if you’re in kidney world, compensation is the big dividing issue. The old staid institutions are very skeptical of it because it seems radical and scary, and it’s just a big flashpoint.

If you haven’t heard—like, if you’re an alien dropped into this, which I think is a reasonable proxy for where most Americans are—the idea of, Hey. This person who does a hard thing—should they be paid for it? doesn’t sound crazy at all. It sounds completely reasonable, especially when you lay out the consequences, which that study does.

If it didn’t change donation rates at all, I would still be in favor because I think it’s important to compensate people for their work, but I would be much less strongly in favor. The case overwhelmingly rests on the belief that this would clear the waiting list and get people kidneys to save their lives.

Demsas: But would this clear the waiting list? Because $50,000, you said, is the amount to which people are being compensated for their pain. But I’d imagine a lot of people would expect, on top of that, like, I don’t just go to work to compensate me for the pain of going to work. I want more money than that.

Matthews: Right. No one knows what the right price is to clear the waiting list, in part because, outside of Iran, no one really has a market on this. And so it’s hard to get accurate price discovery unless you have a real market.

And I think the best study I’ve seen on this suggested the market would clear at like $77,000 a year, in McCormick et al., 2022. But they have a very wide error band. What I feel very confident saying is that $50,000 from the current baseline would dramatically increase donation. I find it hard to imagine that that would not be true. It might not increase it to the point where we have all the organs we need, but I think it will very substantially increase it.

And if you’re skeptical of that, I would say that that is one reason to support this bill, that we don’t have a lot of evidence about this. And it could be that I am wildly wrong, and I will gladly concede defeat if we do it and donation rates don’t increase at all. But we won’t know if we don’t try.

Demsas: And you’ve reported on this bill, so do you have any updates on whether or not it’s likely to pass?

Matthews: It’s up in the air. I think it has pretty widespread bipartisan support. They’ve been trying to do—this is called a Noah’s Ark approach to co-sponsorship, where you add one Democrat for one Republican, and so on. I think they’re up to, like, eight or 10.

And I’ve been impressed by how bipartisan it is. I think it is likely to save the government money because the government pays for a lot of dialysis, and dialysis is extremely expensive. And so anything you can do to increase transplantation probably saves the government money, even if you’re paying donors a significant amount.

I think the difficulty is some of these more conventional organizations in the kidney world that are skeptical of taking a step of this magnitude. And if I wanted to be cynical, I could say that the people with the most money in kidney world are dialysis companies, which lose money whenever people get kidney transplants and so have an active interest in trying to reduce the number of transplants.

If I wanted to be less cynical, I could say: It is a significant policy change, and people are understandably hesitant to change the paradigm. But it’s just very obvious to me that the current situation isn’t working. I think that’s obvious to a lot of people in Congress, and I think there’s appetite for something different.

Demsas: Well, Dylan, this has been a lot to think about. And always our last question on the show—which I hope for many people, they would answer it by saying they now feel that kidney donation is safe—but for you: What’s an idea that you had that seemed good at first but ended up being only good on paper?

Matthews: This is probably not going to—if people have listened this far and think, Dylan’s a crazy person who wants to let people get money for organs, this is not going to disabuse them of their impression of me. Years ago, I got really into this research-literature finding that places that naturally, due to rock composition, have more lithium in the water supply—just, like, trace amounts of lithium—also had lower suicide rates.

Demsas: Oh, because lithium is a treatment for depression, right?

Matthews: Specifically, it’s a treatment for bipolar and schizophrenia. But yeah. So it had a causal mechanism that made sense. It was very, very small amounts, and there didn’t seem to be negative side effects from this. And it felt kind of like putting fluoride in the water, like, Maybe this is just a nice—there was a really big study in Denmark that was doing really good matching controls and tracking people over time that found a null effect.

And so that was a place where just, like, Oh, this seems interesting—maybe a really cheap intervention that could save people’s lives. And then, smart people looked into it, and I was like, Yeah. Okay.

Demsas: Okay. So we’re not putting lithium in the water?

Matthews: See? I’m not totally unreasonable.

Demsas: Yeah. (Laughs.) Well, Dylan, thank you so much for coming on the show.

Matthews: Thank you so much for having me.

[Music]

Demsas: Good on Paper is produced by Jinae West. It was edited by Dave Shaw, fact-checked by Ena Alvarado, and engineered by Erica Huang. Our theme music is composed by Rob Smierciak. Claudine Ebeid is the executive producer of Atlantic audio, and Andrea Valdez is our managing editor.

And hey, if you like what you’re hearing, please leave us a rating and review on Apple Podcasts.

I’m Jerusalem Demsas, and we’ll see you next week.



Source link

Leave a Comment