Taboo Trades
Taboo Trades
Kidneys with Sally Satel
I discuss what it's like to need (and receive) a life-saving kidney transplant with AEI's Sally Satel (a two-time kidney transplant patient) and UVA 3L, Caitlyn Stollings, who co-hosts this episode.
Dr. Satel is a resident scholar at the American Enterprise Institute and the staff psychiatrist at a local methadone clinic in Washington D.C. She was also an assistant professor of psychiatry at Yale University from 1988 to 1993 and remains a lecturer at Yale.
Importantly for our purposes, she is a two-time kidney transplant patient and has written widely about that experience. Dr. Satel is also the editor of When Altruism Isn’t Enough: The Case for Compensating Kidney Donors
Recommended Reading:
Desperately Seeking a Kidney - The New York Timeshttps://www.nytimes.com › magazine › 16kidney-t
Dec 16, 2007 —
The current kidney donation system is failing us.https://slate.com › technology › 2016/09 › the-current-...
Sep 13, 2016 —
Opinion | Generosity won't fix our shortage of organs for ...https://www.washingtonpost.com › news › 2015/12/28
Dec 28, 2015 —
Cook, Philip J., and Kimberly D. Krawiec. "If We Allow Football Players and Boxers to Be Paid for Entertaining the Public, Why Don't We Allow Kidney Donors to Be Paid for Saving Lives." Law & Contemp. Probs. 81 (2018): 9.
Because I'll say it on this podcast, I will pay the next person if I have to. I pay, and you know what? Now that I've announced this to your 3 million followers, who's going to know?
SPEAKER_07:Hey, hey, everybody. Welcome to the Taboo Trades Podcast, a show about stuff we aren't supposed to sell, but do anyway. I'm your host, Kim Kravick. My guest today is Dr. Sally Sattel. Dr. Sattel is a resident scholar at the American Enterprise Institute and the staff psychiatrist at a local methadone clinic in Washington, D.C. She was also an assistant professor of psychiatry at Yale University from 1988 to 1993 and remains a lecturer at Yale. Importantly for our purposes, she is a two-time kidney transplant patient and has written widely about that experience. Dr. Sattel is also the editor of When Altruism Isn't Enough, The Case for Compensating Kidney Donors.
UNKNOWN:Thank you.
SPEAKER_02:Hi, Sally. So I am Caitlin Stallings. I'm a 3L here at UVA, and we're so excited to have you here today. Oh, thank you. One of my first questions is, so the class knows this, and I think some of the listeners may know this from our podcast with Martha, but my mother-in-law recently received a kidney transplant. So your story actually really resonated with me for two reasons. First, because it took them a very long time to figure out what was going on, why my mother-in-law's kidneys were failing as well, similar to your story. She ended up having a rare disease that I won't try to say on the air. And then second, I know my mother-in-law felt the same sense of obligation that you described in your articles. She found her sense of obligation completely overwhelming, so much so that she actually ended up deciding to go with a deceased donor instead of continuing to look for a living donor. She actually asked both me and my husband, her son, not to get tested. Because she just didn't want to know because she didn't have a sense of obligation to us. And I feel like so much of that sense of obligation to your donor comes from the belief that donating a kidney or any other organ is very risky and very costly to donors. So do you think that as time has gone on, you know, your New York Times article was written in 2007. So that was, you know, 15 years ago now. These surgeries have become less risky and therefore it would be useful to put out some sort of PSA campaign to inform potential donors and just the public generally and reduce that sense of obligation? Or do you think, as you said in your Washington Times or Washington Post article, that the yield from public awareness campaigns has leveled off and this would not be useful to reduce that sense of obligation? The
SPEAKER_06:first thing you mentioned, it was given a formal name several decades ago by a Fox and Swayze, and I think one of them's an anthropologist and one was a bioethicist, but in their book, they called it the tyranny of the gift, which is essentially a psychological tyranny, or even potentially a practical one in that, well, from the standpoint of you know, obligations. It depends, you know, in families, sometimes people have power over other people, so there could be a consequence to not giving. But the mirror image of that is, right, what the, you know, what the recipient could feel in terms of a, you know, crippling sense of obligation. And I, that was actually my original experience impetus for not wanting to get one from a person. That was the reason. Then the reason became, oh God, I'm not going to get one. So I have to buy one because people kept dropping out. But originally that was my motive for wanting to make this, excuse the pun, sort of bloodless as possible and, you know, really sterile. And, you know, that is one of the, I'm a psychiatrist, I'm certainly not a market person, but that is one of the virtues of a market. I mean, some people might think that's a negative, but I mean, the fact that it can restrain you from these kinds of feelings of rational or not obligation is to me a plus, especially in this in this domain. Although that is not my motive for pushing compensation, but it could be a secondary benefit to some people. Has it become less risky? I don't think so now, unless you've already, I don't know, Kim, do you plan to also talk to a transplant surgeon or a transplant, you know, expert in your series? Not, not this season. Okay. They could tell you, but it's not my impression that it's gotten any different in a way that's, you know, maybe they have some new instruments, but the techniques that they've perfected, again, I think are more benefit the recipient. So, for example, maybe you've heard, I'm sure that, you know, one of the requirements from getting a If I were to get a kidney from one of you, we'd have to have a matched blood type. And that's not true anymore. You know, I got a second transplant. I guess you know that. And that was from a person who was a different blood type. And I assumed that ruled her out. And when I found out they can pre-treat you with, I have to admit, I'm not, you know, I'm a little rusty on what they did. It was not that long ago. The second one was five months. Years ago. Yeah. Well, six years ago, 2016. But it's a pretreatment to manipulate your immune system. And it's just some, you know, it's an IV infusion. It's not a big deal. I mean, it's a huge deal. It allows the transplant to go through, but it's not a big deal in terms of feeling any kind of pain or discomfort or whatever. So I don't think that's changed. And, and I happen to think, oh, and the other thing you mentioned was, you know, the more it's a strange tension in the sense that this is a big deal. I mean, it's surgery. It's, it's a fairly routine surgery at this point, but still, you know, it's a surgery and most people just would rather avoid a surgery if they don't have to. And the more fuss you make over it does, does kind of solidify the idea that, oh my God, this is so risky. You have to be a hero to do this. And they do use that word hero. And, what can I say? I get it. Um, certainly these people are heroin, you know, heroic to me, but, um, but Virginia, who was my first donor would always say that, please don't, you know, I'm not a hero and cut it out. And it makes, it's intimidating to other people when that's how she felt. And I think there's some truth to that, as you point out that the more you, um, the, the, you know, the more worship medical worship, there is a hero worship, uh, the more, the more, um, off-putting in a way it can seem to others. Thalia,
SPEAKER_07:do you want to follow up on what Sally just discussed?
SPEAKER_08:Yeah, sure. Thank you. Hi, I'm Thalia Stoneberry. I am a 3L at UVA. Thank you so much. to view kidney donations in the same light that they view blood donations and the public was educated enough about the actual process as it takes place, that might increase the donor pool. And even in the event that compensated kidney market doesn't become available anytime in the near future, what other practical methods can we employ to stimulate donations from ordinary, not exceptional people?
SPEAKER_06:Well, your first point about trying to make it somehow equivalent to blood donation in the imagination of the public is, I think it would actually be a real blowback to that because it's so clear it's not. I mean, it's so intrusive. And the risks are, even though the risks, the absolute risks are very low, the relative risk to blood donation is probably infinity. It's really
SPEAKER_07:large, you know. And you can give blood in, you know, like an hour at work or whatever, right? I mean, it's also just from a time perspective, it's just much less burdensome.
SPEAKER_06:Yeah, there are a million ways. So I think that would kind of backfire and people would say, why do they think we're dumb? You know, don't think that we don't see this great discrepancy. So I don't know. Of course, I'd like that. I'd like people to have that kind of have that sense. But I'm not sure that's realistic or even fair. And so while I do wish it became more normalized to some extent, and you don't need that, Maddie. How many millions of people are there in this country and all we need are right now, a hundred thousand, you know? So, um, but, uh, so, so to go to that extreme, what I would consider extreme sort of public relations, um, uh, strategy would, I think just alienate folks. So I'm not sure I'd go with that, but, um, but what would I do instead? Oh gosh, you know, it would be so nice. Well, I, I used to think it would be great if celebrity, I mean, I certainly don't want anybody to need a kidney, but that, you know, if a celebrity needed a high profile person, you know, needed a kidney and they got it from somebody, and of course they would because they're high profile, that that would really help. And it is true, I believe, that after, the only person I could think of at this moment who was famous, the most recent famous person was an actress named, Oh, Selena Gomez, right? And I think there was a blip. I think that's been noted. Whenever a famous person has this kind of a procedure, there's an increase in what's called Good Samaritan donation after that, meaning you just go to a hospital and basically say, sign me up. I'll give it to anybody, the next person online. But then it goes back down to normal. So I think... Talia, the real solution to this is what I'm here for, to talk about, or what we're all here for. But I think that would do it. I really think, and this is an empirical question, so we can test it, that if people knew they could get, and I know there are debates about the nature of the rewards, and we'll get into that, I'm sure, but if people knew that they could be rewarded pretty significantly for saving someone's life. I really have no question that we would have a hundred, we would have hundreds of thousands of people inquiring now how many would actually come through the once they learn more they might peel off and then family members you know i've been through that uh where the family member of a potential donor talks them out of it you know people would certainly that list would would certainly be reduced but i don't think it would be reduced to lower than a hundred thousand and so i think that's the way to do it and short of that because that's not happening right away i i guess from a policy standpoint, I kind of wish states would take this on, even if the federal government wouldn't, and then provoke a challenge or something, you know, to have compensation. But at least it would get the issue attention. And the more attention the issue would get, the more you could hear from people like Martha, and from Martha, or the two people, or Josh, or the two people who, you know, gave me kidneys, and they would they're all realistic. I, none of them say, Oh, it was nothing. And I think that has a lot more credibility, you know, than if they said, Oh, you know, it was like getting my blood drawn. Obviously it's not. So, so that's my, thoughts on that.
SPEAKER_07:Let's return to Caitlin, who had a follow-up question as well.
SPEAKER_02:I asked if you think that paying donors would completely remove that feeling of obligation. And my sense from your answer to the first question is that you thought that might be like a collateral effect for recipients, but it wouldn't be like what the goal of compensation was. How much do you think that would help in making these transactions a little bit more palatable? And my question really focused on, we accept very valuable things from others all the time, including life-saving and life-sustaining things like food or shelter. And then we don't feel like we owe them anything after paying them. I go to the grocery store, I buy my food, I need it to live, but I don't feel bad about it after the fact, or even, you know, being saved by somebody in like a law enforcement context. I don't think you feel necessarily that same sense of obligation because those people are being paid to do their jobs.
SPEAKER_06:Well, you know, it's interesting. This issue, probably like so many I mean, there's so many potential kind of category errors. And, you know, one is that, yes, you do all these things every day and they are essential to your well-being, but they're not novel. And and that makes such a psychologically that makes such a difference. I mean, you know, people are you go outside. I forgot the statistic, but, you know, the chances that you're going to be hit by a car within five miles of your home are more than the flying distance. any risk of your plane crashing. And yet, you know, and it's true, some people are afraid of driving, but more people are afraid of flying. So that's a big element in this. In some ways, my thought is, There's no one answer to this. Like, what's the rate of this? Or how do you think this will have an effect? Well, on some people, it'll mean a lot and fill in the blank, whatever that manipulation might be, the money or no money. And some people will mean something entirely different. And again, it's a big country and all you need are really not many people to, I think Virginia once did a calculation that she must have looked up every Baptist church in the country and said, if only one person out of every congregation did this, we'd be, you know, we would clear out the list. And one of my thoughts is that another reason we should have a compensation is because maybe we just want to clear out the list. And maybe by the time we do, you know, those picking kidneys will be ready. And we won't even have to ask people for organs anymore. I'm convinced when you guys have grandkids, I mean, kids, probably even kids, but by the time your kids are adults, this will seem so primitive. Like, oh my God, you had to get a kidney from a person. I mean, it will just seem bizarre. And maybe even the pigs will probably seem bizarre, you know, after they get going and maybe in a I don't know, I'm guessing 50, 80 years, it'll be, you know, micro tiny little micro dialysis machine that they can implant, you know? Um, so, uh, we're in such, in some ways we're in such a primitive stage. Um, but I don't know, it's hard to answer a lot of these questions because it's, you don't know what they're going to mean to a prospective donor. And Virginia always said, um, And I think this would be, you know, what can I say? I was never on the other side of this, although I tend to think that I would share Virginia's view if I were a donor, which is, you know, pretty instrumental. You know, she said, you need something, I have it. I have an extra one. You know, why not? Now that's, it would be interesting to know what percentage of the population tends to have that view. I suspect it's not the majority, but again, probably still enough to say you know, get the number of people that we need. Let me turn to Tom, who has a follow-up to this.
SPEAKER_01:Hi, Sally. I'm Tom DelRogno. I'm a 3-0. Often we think about prohibiting compensation for organ donation as sort of limiting the donor pool due to a lack of tangible incentives. But I guess we might also think that when we foster the perception that certain items like kidneys are noncommensurable, that this artificially sort of heightens the gravity of the situation in the minds of donors, which has a deterrent effect. For example, when people say a possession of theirs is priceless, often what it seems they're really communicating is that they would never sell it, let alone give it away. That this possession is sort of in a separate category of goods beyond the reach of the market. And it seems like the current legal structure of the US kind of imposes this view at the outset. And by prohibiting our current organ donation system from sort of assigning a price to kidneys in some form, it seems to make it far more difficult for people to think of kidneys as simply a part of them can be transferred. So I'm wondering if you have any thoughts on the idea that If we were able to assign a price to kidneys, might this sort of lessen the gravity and anxiety of the situation to donors since they no longer think of themselves as giving away something that's priceless?
SPEAKER_06:Yeah, it might. I feel like I'm falling back on what I said before, which is to say, even if some do... Or some could go the other direction. They could be offended. And that would be even more of a, in fact, I've had some, I've had, I've gotten, I mean, they've slowed down a lot because I don't write about this that much anymore, but people saying that basically if you, as if I have the control, but if you start paying for kidneys tomorrow, I'm not giving one. you know, meaning I'm not even getting it for free, which is a crowding out phenomenon. And which of course is beyond illogical. Are these people who have actually been donors? No, no, these are people. Yeah. And I haven't gotten one yet from someone saying, I'd like to take it back if your kind gets in control, but that I haven't encountered yet. But then again, all kinds of- Just
SPEAKER_07:expressing skepticism about what people who actually haven't done it say would prevent them from doing it. So,
SPEAKER_06:yeah. Yeah, right. And so as illogical as it is, what does that have to do with anything? That's how people operate. So, I mean, that's just- reality that some people, I think it could go both ways with your proposal in that it could, it's conceivable, it could make it seem a little less, people have been alluding to since the first question, a little less of some abstract and almost barely attainable kind of an action to donate. Or it could, like I was saying, it could either offend people or make it seem far less of some sort of unattainable goal. So I imagine it could go both ways. I'm very pragmatic in this. I don't care what people's motives are. I don't care who gets turned off. I only care that two more people get turned on by this, that it's more attractive in the aggregate than it is a deterrent to other people. Almost every possibility that you suggest is, that you've all wondered could happen, could happen. The question is, is it likely to cause more people to refrain from this activity who would have considered it than not? And a lot of these things are empirical, but we've seen in almost every domain that you offer money for something and you get it. We've seen that with every other bodily product, sperm, eggs, not blood, but plasma. And the reason they pay for plasma, not blood, is because plasma doesn't take an hour. It takes three hours. And I don't think that discomfort is any greater, but it is more of an investment of time. And they clearly weren't getting enough Or they wouldn't pay. Who wants to pay if you can get it for free, like blood? And besides, we do have blood shortages from time to time. And yet we are the world's, at least we were until recently, the world's biggest exporter of plasma. And in an act of incredible hypocrisy, there are countries that pay for our plasma, but won't pay their own won't allow it in their own country. So lots of inconsistencies. Did I, Tom, you could ask, you can follow up if I didn't.
SPEAKER_01:No, I think to the extent you kind of highlighted the aspect that, you know, many of these are so open-ended, but of course you just like to hear the perspective of someone who has, you know, been, been sort of in the situation and, you know, brings a different point of view.
UNKNOWN:Yeah.
SPEAKER_07:We have a group of questions about soliciting, recruiting, attracting donors, and in particular about your experience with that, Sally. So I am going to ask Jackson and Caitlin Stallings to ask their questions together and then get a response from you because they're a little bit similar. Let me start with Jackson and then go to Caitlin.
SPEAKER_03:Hi, Sally. I'm Jackson Bailey. I'm also a 3L at UVA. And my question is, how do we deal with inequality among people with out their friends to be organ donors. People generally are friends with those who are of similar means to them, and thus wealthier people likely have more access to potential donors who could take off work in order to help their friend through donation. I guess the obvious answer here is to allow payment to donors, but is there a way we can combat this now?
SPEAKER_02:My question is, I don't buy into the coercive effect of compensating donors, especially low-income donors. I don't think that it's coercive. So I think the concern about protecting low-income people is interesting. And I know you noted that low-income people are disproportionately represented among those on the waitlist for a kidney. And also, it seems to me, after speaking to Martha on our prior podcast, that low-income people are the least likely to have the opportunity to donate in the first place because of the opportunity costs of taking time off work and child care and those sorts of things that donors have to go through. And yet, I'm sure that low-income people are more likely to be associated, as Jackson said, with other low income people and therefore less likely to find a donor who has those resources. So my question is really, you know, should we be less concerned about coercing low income people in these circumstances since they are exactly the type of people that we actually want to attract with a compensation system, at least one that adequately ensures that, you know, we're not coercing them to the extent that that's possible, which I expressly I don't really think is true. Not solely because they are low income, but because they have the most benefit from both the financial and the medical gains of a system where they were compensated.
SPEAKER_06:Thank you. So Jackson's question about unfairness in social networks, basically. Well, you know, welcome to humanity. That's how it all works, which doesn't mean we don't want to try to help change situations that are... And just because... it's true in every other domain of medicine that we can't try to make it better here. A lot of it has to do in my experience. So a lot of this is really anecdotal, but you know, with who your doctor is, I mean, the first doctor I had, I first found out I had a problem with Most people I think who are asymptomatic are diagnosed just by a blood test. And because my problem, whatever it was, it was never diagnosed, was obviously insidious. It must have been going on forever because I felt fine. So if you have kidney function develops rapidly, then you'll feel better. quite terrible, but you know, this is true of almost every kind of organ failure with Parkinson's where you're essentially the dopamine containing neurons are starting to fail liver failure. You don't, it doesn't manifest clinically until you're like 90% of the way that organ is about 90% of the way destroyed. If it starts early and in the slow. So, so I had time to I had more time than most people, but I first started, got this blood test back. I remember it was like August, early August of 2006. And I think a lot of better doctors were out of town, but the doctor who did the blood test, he was a gastroenterologist. So he obviously didn't know about kidneys, except to know that my blood test was pretty abnormal. So he sent me to, I think the first person, and I don't blame him at all for this. I think he was really trying to be very attentive so he sent me to the first nephrologist I think he could find who was still in town in August and it was a woman who was oh boy I mean she must be long retired by now because she was I she was older lady when I saw her and her first and the first visit was just Well, of course you'll, of course, at some point you'll need, you know, you need what's called a fistula in your arm to connect to the dialysis machine. And she was just assuming, assuming that I would go on dialysis. She knew I was, you know, another, a doctor granted of psychiatry, not a, you know, internist or, but she knew that it's clear, you know, I have, you know, I'm not low income and this is how she was treating me as if, well, you know, you can, you get a kidney, you can, you should even think about it much longer. much longer survival and there's living and there's deceased. But living is the best and you should get on that right away and here's how to do it and here are these groups. And admittedly, I think there are a lot more groups now that will help people find donors and give them all kinds of strategies. So that's the answer to your question is I think that nephrologists and social workers should be much more attuned. A lot of these new organizations One is called Transplant Academy. All you have to do is call them up and find out the names of others, although there's, you know, they're different. Excellent. I think they're based in Arizona. And they will talk to people, here's how you could write a letter to everyone you know, or if you feel awkward, and a lot of people do feel awkward asking for themselves, here's how you might recruit a relative or a friend to write those letters. Here's how you might approach your rabbi or your pastor. Here's how you could approach your fellow colleagues at work, that kind of thing. I think that would be extremely helpful. And I can't help but think that there's somewhat more, that there's more enlightenment these days on that. That would be my answer, Jackson. Does that sound reasonable? And then Caitlin was asking about, I'm sure you didn't quite mean it this way, but what you said, maybe we shouldn't worry so much about coercing low-income people. I think the standards for coercion should probably be the same, or trying to avoid it, you know, should probably be the same across the board. But-
SPEAKER_07:she's not a fan of arguments that offering payments. Yeah, no, I know. That's why I'm clarifying it for you. I think you're in agreement on this point.
SPEAKER_02:It's not that I believe that there should be different standards. I think people just focus mostly on the fact that that's true. Oh, that's definitely more coercive to a low income. Oh yes, of course.
SPEAKER_06:Yeah. And, um, well, first off, I think people don't understand that you do, but I think a lot of people who use the word coercion don't know what it means. The same with the word, um, exploitation. So coercion is kind of your money or your life kind of situation. And you agree with that, Kim, don't you? I do. I'm sure you have a more legalistic way of describing it. No, I
SPEAKER_07:actually want to recommend the episode that we recorded with Vida Panich, who is a wonderful philosopher. And we spent a lot of time discussing coercion with her and the way in which it's frequently misused in the literature, especially in connection with these types of I think
SPEAKER_06:that all the questions that I'll even use the word opponents, the loyal opposition, the people who don't agree with compensation that they bring up are not bad questions. They're just answerable questions and they never change. they'll never accept the answers. But so the answer to that is you don't want to exploit people. So you don't give them a dollar for their organ. You know, you don't give them 500 bucks and then give a graduate student at MIT who may be, you know, not making a lot of money now, but you know, is going to go work at Google and make a fortune or start his own, you know, or her own, you know, CRISPR company or whatever. The earning potential is enormous. So you give them a lot more money because they have, you know, the better kidney, but we're not talking sperm here. So, and you can't get a lousy kidney because this is the, in a way, the beauty of the system is that There is a massive intermediary here. There aren't back alley transplants. Everything goes through a medical center. And if your kidney, no matter how much you want to give it, it's not healthy enough, you're not going to give it. So those protections are built in. And so for low-income people, I would say you respect their capacity to make decisions in their best interest. And not everyone can, but that's true of richer people too. You offer them something that is not exploitive. Now, why does everyone say 50,000? I don't know, but it seems to sound right to almost everybody. And we'd know if we ever did this experiment, whether it was enough. And I don't mean a cash tomorrow, you know, here's 50,000, but kind of amortized and spread out in ways or in kind. And, and of course you protect their health. And this is where the, I guess say the waiting period comes in because the, What most people who are reasonable about this issue, where they do kind of hesitate, is that a poor person who needs help would rush into doing this. And then the important part really is, and then regret it. Not that their health would be harmed because they wouldn't be able to get through the system. That's not an issue. That would be an issue in a third world, for sure. But that they would regret it. And no one wants people to regret it. You get one disgruntled person and they could get on, you could imagine they could start their own media campaign and that would be really destructive. So you really, and it's just not humane. You don't want people, I mean, that's life. People regret a house I once bought, but still this is an area where understandably, I think more care should be taken. And so that's why, that's the premise for my book. two of the main suggestions, which is don't offer cash, which to be honest, I personally wouldn't have that much of a problem with, but so many of the things in this plan are done to assuage concerns about others. And the other is build in a waiting period. And that one I'm okay with. And in truth, there's a natural waiting period built in because Even if you want to give a kidney tomorrow and it's your mom and there's no coercion and nobody thinks, oh, what's fishy about this? They just met three minutes ago. This still takes like three months minimum. I've never heard of anybody being able to offer a kidney and get it removed in less than three months. So that's already... And I think I've heard people say, I don't know if this is true, but I don't think it's that... It's okay to me, if it is true, that they almost purposely drag it out a little bit longer just to test somebody's commitment to it. Because, you know, there's a lot of running around you have to do. I'm sure Martha told you all that. A ton of running around to do. So I think with those protections that the low-income person, as you say, in some ways is more... is definitely more needy. And so I suppose you could argue we shouldn't have as many barriers in the way to that, but I feel we should do this. I mean, one of the things that would kill this program in a minute is if we treated people differently. I think even if there were more advantages, somehow it could construe advantages for low-income people. Somehow that would be turned on its head as somehow, oh, you can't wait to get the poor kidneys. So you're making it, it would backfire. It has to be, I think the same across the board for everything.
SPEAKER_07:Sally, Neva actually has a follow-up question on the discussion of the waiting period and not offering cash.
SPEAKER_10:Okay. Hi, I'm Neva Jones. I'm also a 3L here at UVA.
UNKNOWN:Okay.
SPEAKER_10:So you were talking about the protections built in not offering cash six month waiting period. In your article, Generosity Won't Fix Our Shortage of Organs for Transplants, you specifically say, why doubt the capacity of low income people to make decisions in their own interest? So I wonder if you see those protections, I'll use that in quotes, of the waiting period and not offering cash as unnecessarily paternalistic. Oh, they're paternalistic, but they're necessarily paternalistic. Oh, I'm sorry, I
SPEAKER_06:interrupted you. Go
SPEAKER_10:ahead. Well, I'm just interested to hear why you think necessarily paternalistic. As long as you have the same standard for everyone. Again, I go back to your line. Why do we need to protect low income people or any people from regret? Okay, well, that's an interesting question,
SPEAKER_06:really. I think that, well, I mentioned before, I think it would be very bad press just to be very, very aggressive practical about it. If somebody did regret it afterwards, they would, they could make a big fuss about it. And that I think would harm the program. You got to remember that not everyone's as reasonable as you guys and we're thoughtful. There seems to be in my reading and correct me if, if you have a different impression, Kim or anyone else, that there's a general consensus among people who are in favor of, of rewarding donors, that it would all kind of go the same way, which is that there would be this third party payer. And Neva, I actually think a lot of this is kind of paternalistic and bending over backwards to accommodate the people who are very squeamish about it. But that's compromise, and that's the only way this thing could ever, I think, move forward. I mean, I personally might give cash, but then you get– but the more you– this is a real tension here. The more you want to individualize it, the more maybe it gets set up to look like, well, you're– in other words, if there weren't a cash as an option– then you'd have to have, I think, and this is paternalistic, it's true. I think you'd want to have the person definitely undergo financial counseling beforehand so that they know that they should save most of this for a while, or at least if they have a house, you know, it's going to go into the house. And yeah, I guess in a way there's a little strain of, I like that, even though I would also be doing it largely to placate critics, but there's something in me that almost finds that a little bit reassuring. Although what I don't care about is if I gave you$50,000, if you gave me a kidney and I gave you$50,000 and you spent it on a Lamborghini, God bless you, just drive carefully. I don't care about that, but you should hear, you really have to, well, you've probably read the objections. Oh my goodness, the objections that people have to this, that even a reasonable proposal like the one we've been discussing is just, some folks are just completely up in arms about it. So Sally,
SPEAKER_07:I just want to jump in here. Phil Cook and I actually proposed, we proposed a cash payment, but delayed. What we want to do is encourage people to properly weigh costs and benefits by improving the decision-making environment. One way to do that is to slow down the process. As you have already noted, it is already a slow process, but to the extent we need to slow it down even more, one way to do that is to have delayed payments. We put forward a variety of proposals for how to do that, not that we're opposed to other types of payments, but as you say, just putting out all the options. I would just point out that I think it's a mistake to focus on poor people here because people who all sorts of people would be influenced and motivated by proposed payments. I mean, that's the whole point of them. And lots and lots of people are liquidity constrained or would find a$50,000 payment if they're young and reasonably healthy and want to save somebody's life to be an attractive inducement. And so for me, at least, and I think to speak for Phil now, since we've written about this, to focus on poor people as if those are the only people whose decision, who might be affected by either induced by an incentive or have a problematic decision-making process in the face of a large cash payment is a mistake. And I think contributes to some of this sort of paternal, you know, paternalism that we see from a lot of critics. That's my two cents anyway.
SPEAKER_06:I, I, I kind of agree, except, you know, I'm going, but now I put back in the mode of practical. You can make an argument why maybe we emphasize poor people too much. I do think we have to emphasize them a little more, but too much because the politicians will, and every one of our people who would be arguably against it will. So that's another reason why, but it's right, the delayed payment, Then you could have, another option is that you could have amortized payments, you know, where- Exactly. We're talking 50,000. So it's 5,000, you know, every year for 10 years, you get$5,000 or- Well,
SPEAKER_07:and we definitely don't propose anything like that, which I think would undo the incentive effect, but we do have a variety of proposals to slow down the decision-making process and make the information environment more robust.
SPEAKER_06:I have a plan. I have a plan, too. We both sound like Elizabeth Warren. Another plan that I wrote up with a tax expert at AEI about how to do a tax credit, and it would be a credit. It wouldn't be a... For heaven's sakes, what's the other... A credit versus... Thank you. It wouldn't be a deduction. And for people who have no income, it would then be, I guess, a... But there's another word for that. Forgive me. Yeah, you
SPEAKER_07:could delay the payments for sure. from decision-making deficits in the face of certain environments.
SPEAKER_06:Yes, that's true. Another question that's along these lines where someone raised is, you know, we think all the, Kim, you just said this, that we automatically think all the donors or most of the donors' potential compensated benefits donors, um, would be poor. I don't think they'd be, I really don't think they'd be poor. I think they'd be graduate students. I think, um, they would be, they
SPEAKER_07:would be liquidity constrained people, right. Which is one reason I think it's a mistake to focus on positive about
SPEAKER_06:that. I'd love to do that. Let's do that experiment. And I don't mean a questionnaire because there's so much you can extrapolate from a questionnaire and, um, and about something this, you know, this serious. So, um, I, I don't, I think that is a red herring. And so I agree on that on that count. I don't think they'd be the ones doing this, you know, they might come late to the late to this, you know, after several hundred thousands of graduate students have done it. And also, it depends on how much that this is written about in the media that people even know it exists. And that's something that right there. is a protection, ironically, for poor folks because wealthier folks are just more attentive to media and things that are going on. And also people who are low income tend to also have less education. And we know that people who have less education and maybe have had unfortunate interactions with the healthcare system don't even want to think about this. It's just not, it's the, no, I'm not even, this is just not something they would even find appealing, even if there were money involved. And so I think we see this now because there are fewer donors for poorer people. Now, to the extent that some of those poorer people are Hispanic or African-American, there are also, there's the added problem of illness burden, which is to say that there's a decent likelihood that if you need a kidney because of diabetes, that, um, your close relatives or whoever in your family, you might ask, but usually it's close relatives, you know, either have that problem or in the early stages of that problem are likely to develop that problem. And that would rule, rule them out. So that's, that's an extra burden and that can't be addressed. Um, I mean, that, that, that's just the way it is, but, uh, luckily, uh, You can get, I could get a kidney from an African-American person. You can get a kidney from a white person. So, you know, that wouldn't matter. That's where, again, the compensation system could be valuable is it would benefit. the minorities the most and low-income folks the most. For the reasons that Jacob mentioned or Jackson mentioned right away, which is that they have a larger network, a more amenable network, and probably a healthier.
SPEAKER_07:Great. So we have a couple of other questions about soliciting, about the search for a donor and about your experience with it. So Madison, let me turn to you. Hi,
SPEAKER_11:I'm Madison. I'm also a 3L. I think you spoke a little bit about this in your response to Jackson's question. But one of the things I really appreciated in one of your articles was your conversation about your experience whenever you first went on that matchingdonors.com. And sort of the experience that you felt whenever you were reading other people's profiles of like, how do I build my profile without being overly emotional? You know, there's people on here who are like, I'm a mother of five. And, you know, how do you build that profile? And I guess I just hadn't thought about the actual solicitation of donors before. And it's a little bit jarring to me that so much of the onus seems to fall on the recipient to sort of find somebody to give them a kidney, especially in a time when
SPEAKER_12:it's
SPEAKER_11:already emotionally difficult. And so asking you to go and do this seems challenging. I guess my question is whether you think that we need to shift that and find other organizations, as you had mentioned before, who are able to take on a lot of that work? Or if you think that the solicitation by the recipient is actually a very efficient way to help people solicit donation? And do you think that there's a better way to more equitably distribute donations?
SPEAKER_06:I think that there probably should be, and I did allude to this earlier, that there should be And you're right. I mean, you're kind of, you're out there, lady, you know, if you need to find a kidney. It almost never occurred to me, you know, I never thought, well, why don't you help me? I never thought of that. But it sure would, you know, it could be nice. This is where, to be honest, someone from like a transplant coordinator or somebody could answer probably a lot of these questions that I can't because I'm not sure I suspect it's hospital center by medical center by medical center, that some are much more proactive and others have the kind of doctor that I had, which is, well, of course you'll be on dialysis. And again, if I didn't have my background You know, in medicine, it wouldn't have occurred to me to say, what? What the heck's wrong with you? Of course I'm not going to do that. And not be intimidated also by a doctor because, you know, a doctor tells you something. That's, you know, I've been through that one. And so, yes, they could get, I think, a lot better about it. I don't think that should supplant a person's individual efforts. I think that's pernicious to have to depend on an organization to And for them to tell you that this is the only way you can proceed and anyone who cuts off your options for anything, you know, I think that's very, extremely dangerous. And you're right to be, I sensed, you know, a little bit of a suspicion that, oh gosh, you know, once an organization gets involved, it's bureaucracy and this and that, and it's on top of it, they tell you, you can't pursue this on your own. That's awful. So, but that's why I like the idea of these, you know, we're still not talking about an enormous number of people that, you know, smaller organizations, you know, can't probably could do a lot. You know, I don't think you need the lumbering bureaucracy. Again, there are these really good organizations and people. I mean, there's this woman in Flatbush, if you're Jewish. I mean, she'll find your kidney in a week. I don't know how this woman does it, but, you know, I know her name. I'll give it to you, but... It's a secret. She'd be happy for everybody to, well, probably she specializes in the Jewish community, but point being, these individuals are very, can be very effective. So I wish their names and their, and the Transplant Academy that I mentioned, you know, I wish that got out more. And that's the way to deal with, I think that's a major way to deal with the fact that some people have more access, you know, than others, right?
SPEAKER_07:Sally, can you, what is your sense? Are you aware of how, say, the transplant doctors or transplant coordinators and centers interact with these organizations? Are they, in other words, I can understand why the transplant organizations professionals that, you know, the transplant surgeon or the nephrologist is like, this is not their wheelhouse. But it does seem that there could be relationships that are built with these other organizations or other professionals where this is their business. Are they seeking to do that or does it just vary a lot?
SPEAKER_06:That's what I said. I wish I knew more. I mean, I should have called the woman who runs Transplant Academy and said, how are you interacting with medical centers? Do they reach out to you? Do you tell them we're available? And they go, oh, great. And then a week later, you do get a call or they say, oh, great. And then basically throw your card in the garbage. How is that working? And is it changing over time? I can ask her and tell you, and you can just pass on an email to folks.
SPEAKER_07:Yeah,
SPEAKER_06:sure. Yeah.
SPEAKER_07:That would be great. Alex has a question along these same lines related though, I am more to sort of transparency in the process and, and sort of what's the optimal balance of that.
SPEAKER_04:Hi, I'm Alex. I'm another three out here. Yeah. I sort of had a question about, I guess about the incentive structure of donating. And I guess there's this tension between how much anonymity we want and how much transparency we want in the process. Um, that you mentioned this woman who specializes in the Jewish community. I know when we had Martha on, um, She was partially compelled to donate based on the identity of the person who was going to receive her
SPEAKER_05:kidney.
SPEAKER_04:And a lot of people, you know, we think would donate more if they could be more involved in the process. They'd have more enthusiasm if they knew who was getting their kidney, if they could relate to that person. But at the same time, we don't really want the donor to exert control over the donee's life. And so like Dahlia was saying earlier, maybe anonymity is the right way to commodify this market and make it normal. And then that would actually generate more transactions. So what's the balance there between anonymous donorship and sort of transparency?
SPEAKER_06:Well, I think, again, that goes back to the individual. And we do have that option, although it is after the fact. I guess you're aware of that, right? Like if I get a kidney from a Good Samaritan, I can find out afterwards if he or she wants to find out. But you mean beforehand? I think that, you know, I don't see anything really wrong with the transplant coordinator. If you're going to get a kidney from a Good Samaritan donor, that's the only situation I could imagine this coming up in, right? Because if you find your own donor, then you obviously know who that is. But so to give them that option, you know, you can meet beforehand. You can. I wouldn't want to. I frankly wouldn't want to meet at all. But then that would be an extra burden on me. Now that person feels rejected. So I think that's good as the default. That's just my personal view. I really wouldn't want to know. Other people, it's so important to know. If I were a donor, I wouldn't want to know. And if I were the recipient, I wouldn't want to know. We could ask all 13 of you. I bet we'd get, you know, I'm guessing you get one third wants this, one third wants that combination, one third wants the other. It's all different. And in this case, it might be safer to be as cautious as possible because it might end up, it might end up, I don't know. I'll tell you one thing. This may sound like a crazy analogy, but I was trying to sell a condo and the realtor said, the buyers want to meet you. And I, No, I don't want to meet them. Of course I did. I wanted to sell the damn thing. But so maybe that's me and I'm idiosyncratic and it kind of would be interesting how people do feel about that. But I guess I err on the side of, you know, I do think that we should assume anonymity unless people, unless both parties agree, you know. You know, to meeting or definitely afterwards. That's already policy. But maybe beforehand. I don't feel strongly about it kind of one way or the other. But I think it's weird to have to go back to the potential donor and say they don't want to meet you. That sounds a little odd if the donor doesn't. does want to meet them.
SPEAKER_07:Well, what I found interesting, I think, about Alex's question is a conversation we had with Martha as well, right, from the other side of this, which is, you know, I think there's this tension between many people, I think quite naturally, can feel more committed, especially over this long process, like what Martha had, for example, to if they feel something in common with the recipient, as she did, right? This is a person with whom, you know, she shares a religion and ethnicity and, you know, they're from the same general area and, you know, new people in common, although they didn't know each other before. But that definitely seemed to help her feel a commitment to following through with this. But at the same time, you know, there's always this, Martha sort of raised it and you raised it in some of your writings as well. What if we don't like each other? What if they find me annoying? Or you had sort of raised half jokingly, you know, what if they have something against conservatives? Which I'm not. Which I did not think. I did not think you were, but in any event, you know, so there's this tension between sort of more sharing and therefore more motivation, but running the risk of not only learning something that you don't like about each other. And as you pointed out in your, which was one of the reasons I really like these articles that you wrote and that I gave to the students in advance, the emotional burden that you describe of,
SPEAKER_05:I don't
SPEAKER_07:know, trying to be pleasant and likable and worthy, right? It honestly felt like a really large, huge burden.
SPEAKER_06:Yeah, it was. You know, when I think back on it, it's more distressing than when I was going through it, believe it or not. I just was in... I can't even get myself back in that mindset. What was going through my... survival. I
SPEAKER_07:mean, now you have time to reflect on some of that other stuff, right? But at the time you were probably just focused on what you needed to be focused on.
SPEAKER_06:Yeah. Yeah. I still feel that I don't want to know the person. I think I do. I don't think I'd want to know them as a, I know that sounds strange, but I'm not alone. I may be the minority. It could go so badly though, as Kim just said, it's not worth, it's also not worth the risk. Like what if the person doesn't, what if, you know, this is not how I imagined you because you always have a fantasy about what this person would be like from both sides. And, you know, some people are, you know, I don't want, oh my God, you're, you're, you're, you know, you're a certain, right. Fill in the blank. You're, you're a, you're race, gender, you know, ethnicity, religion. And, and, you know, it's kind of sad to say, you'd think someone who wanted to give would not care about any of that, but that could be somehow off-putting. And, and I happen to be, you know, this is controversial because people think if you're a good Samaritan, you shouldn't be able to sort of dictate who you're, kidney goes to.
SPEAKER_07:That's why I found Alex's question interesting, actually. I
SPEAKER_06:think you should. I'm not going to be thrilled with a person who says, I don't want my kidney to go to a Jew, but hey, there are a lot of Catholics who need it. And that's fine. If there's one more kidney in the world, to me, that trade-off is worth it. You're a little bit of a bigot. You're an anti-Semitic jerk, but fine. If you want to save the life of a you know, someone of a different religion, that I would allow that to happen.
SPEAKER_07:Am I in the minority, you think? Yes. Yes, I think you are. So
SPEAKER_06:I'm going to assume you're on my, you agree with me.
SPEAKER_07:Yeah, I do. I do. And I think that the number of bigots are a lot less than the number of people who are just more motivated by someone who they feel like Martha did, that she sort of shares some sort of background with. And I also think that, you know, a lot of people just trust the medical system, especially minorities and, you know, are just like, I don't want to give my kidney to just help some, you know. White person.
SPEAKER_06:Isn't that what families are doing? That's a big bias. Oh yeah. It's my sister. Of course. You know? Yeah. I mean, why should you be penalized because you don't have a, well, that's the other thing. Why you should be penalized because you don't have a family that's able to give to you. Yeah. That's another problem, but it's bias all the way through. The whole thing is, and I don't mean bias necessarily in a negative way, although that anti-Semitic example is not
SPEAKER_07:heartwarming. thinking about ways to improve that faith in the system.
SPEAKER_06:Yeah. To me, whatever makes it easier, whatever makes it easier for you as a donor, you know, within reason I'm for it.
SPEAKER_07:We had a couple of questions now about that related to the fact that a couple of your donor, your prospective donors backed out at some point, Sally. And one of the things I really liked about your pieces was how you How much you put us into your shoes in some ways and how difficult that must have been. So I'm going to first start with Samantha and Caitlin O'Malley.
SPEAKER_00:Hi, I'm Samantha Spindler and I'm a 2L at UVA. And I was just wondering how you think we should be balancing the needs of recipients with others. autonomy of donors, like how can you balance people's autonomy to back out of a voluntary medical procedure with people's needs for organs as near transplant experiences can take up precious months. For example, if for a few months, like you thought you were getting a kidney from
SPEAKER_06:someone. Oh, I was furious.
SPEAKER_00:Yeah. You could have been talking to other people in that time. So there's sort of, we're
SPEAKER_06:really not friends anymore over that.
SPEAKER_12:Hi, I'm Caitlin O'Malley. I am a 3L at And I had a somewhat similar question, which is that given the distress that cold feet can cause for a kidney recipient, if you are a donor, do you have a moral obligation to refrain from even broaching the possibility of a donation or embarking on that process unless you're absolutely certain or at least relatively certain of your decision? Yes,
SPEAKER_06:that's easy. That is the easiest question I got. Yes, you should never. If you guys are ever in the position of thinking about doing it, thank you for thinking of it, but don't do another thing until you're sure you want to do it. Because, I mean, it's one thing if you call a hospital and say, I want to do it and then back out, then you didn't let an individual down. So that's a little different. But I mean, once, if you ever commit to a person, boy, you better be prepared to follow through. That said, Samantha, There's nothing you can do if people back out and you can't, God knows you can't force them. That would be unconscionable and illegal. And so you're stuck. I think you're just stuck if people back out or not be friends with that person anymore, which is essentially what happened. Well, actually what happened was I wrote about that and then this person read it and then got really angry and And, you know, that's all I'll say about that. But it's funny because I went out of my way to, you know, not only in peace, of course, of the anonymous, but in real life, you know, as I was going through this situation, I never, I mean, this is uncharacteristic of me because I can sometimes be critical of people I know. I was so nice. I never said, I never, you know, first off, I never, maybe I did tell a few people that this person had, made a commitment Maybe I did tell a few, but I certainly didn't advertise it. And I especially didn't want to advertise it because I didn't want anybody to try to dissuade her from doing it. So the fact that she thought people knew I was writing about her was just so bizarre. Talk about, that's a classic Freudian thing, where you feel so guilty that you assume everyone knows you're guilty. No, they don't know that's you. But that was very unpleasant. I was completely... to her. I said, of course, it's a lot to ask. I really had to muster every molecule of graciousness in my being when people would do this. A friend whose husband said he divorced, I believed it. I didn't think you could easily imagine someone saying that as a way to get out of it. My husband won't let me. In this case, I think it was true. But even if it weren't true, the fact that The fact that she so desperately wanted to get out of it makes me feel bad, you know, that I that even put her in the position now of having to agonize over it and then worry about alienating me. It's a mess. It could be a mess. It's not all, you know, as simple as I need a kidney and my sister goes, of course, I'm going to get I don't have any. So this is how I got into this whole mess is because I don't have any little unusual situation and I really don't have any family that would be in a position to do it. at all, age-wise or mainly age-wise and health-wise. So, but, you know, that I think is pretty much the standard story with people who've gotten the living kidney is, you know, a close relative, possibly even a parent, depending on how young you are, does it. And they say it's the best thing they ever did in their life. And thank God, you know, the two women that gave me kidneys still feel it's, at least it's one of the top three things they ever did. And, you know, one of them, I mean, I don't do it now unless it comes up specifically, but I used to, if we were, she lives in another state, but if she came to Washington, I'd introduce her to people or what. And I'd say, she gave me a kidney and, you know, she goes, don't, don't say that. Don't say it. I don't, don't bring it up. It's like, she just didn't want to make a fuss over it. And then everyone's a little different and I respect that. But, but as far as backing out, what can you do? Yeah. Clearly, people back out of everything, even though backing out of your down payment on your house is a lot different than backing out of this because someone's health is really on the line. But you just can't, you couldn't, because also your life could change. What if your kid, I mean, you hear this a lot, I might need it for my family. And that rarely, rarely happens, although I understand it. But what if that did happen? You know, what if you're you found out during that period? This is probably a rare scenario, but I committed to give Kim a kidney and I really was going to do it. And then my brother needed one. And of course, I'm going to give it to my brother. I certainly couldn't be in a position where I'm bound to give it to Kim. So. Anyway,
SPEAKER_02:you were just talking about like, what if I have to give it to a kid and I already promised to give it to somebody else? Would that be a situation that you think like these kidney chains that they've sort of developed would be really helpful because then you could follow through on your promise, but also find somebody else who was able to donate to your child or whoever else it was that came up in
SPEAKER_06:the
SPEAKER_02:interim?
SPEAKER_06:Oh, I guess they could, but I think, you know, I honestly think anyone would understand that, you know, if someone promised me a kidney and And then, you know, God forbid their own family needed it. I mean, I'd be crazy to, and no one would sympathize. They sympathize with me that I'm upset that it happened, but they certainly wouldn't sympathize if I, was thinking of a lawsuit, which is absurd. That would never happen. Or was really furious at her. How dare Kim give her kidney to her sister when she knows I need it? I don't think that's a reasonable expectation. Yeah, the chains are wonderful. They're brilliant. They probably could leverage even more people. And I hate to put a but after that statement, but there's still only... Several hundred a year, right, Kim? Yeah.
SPEAKER_07:This is part of what the advanced donation program is designed to do, not to deal with so much of the actuality of it, but the fear that what happens if someone in my family needs a kidney later. Yeah,
SPEAKER_06:isn't that UCLA has that program? A lot of it, yes. And even UNOS has that
SPEAKER_07:program. A number of places have it now. In part, it deals with some logistical issues. issues having to do with the time at which people can be transplanted, but some of it has to do with people who are like, I really want to do this, but, but what if my kid needs it, my, somebody in my family. And so I think that that's part of the impetus and the success of that program.
SPEAKER_06:That's a good idea. That's a brilliant, that's a great idea. But all these ideas, even the greatest are not making enough of a dent. Now I've totally agreed. Every kidney counts and, Yeah, and I don't think people realize, they also seem to see it as a one-on-one thing. In other words, you gave me a kidney or I got a kidney from a chain, but that's just me. It's not just you as the recipient. It's, I mean, a whole constellation of people, especially if you have young kids. I mean, you're saving, I mean, not literally because they're not going to die, but you're, you know, functionally saving a whole generation family when you do this as well.
SPEAKER_07:Autumn, you had a question having to do with NOTA and we were kind of interested in getting Sally's perspective on exactly the dealings with the transplant coordinator, especially with respect to the Canadian and what types of discussions might or might not have taken place there. So Autumn, go ahead.
SPEAKER_09:Yeah. So hi, I'm Autumn. I'm a 3L. So my question deals with the National Organ Transplant Act. So basically it talks about an exchange of an organ for any sort of valuable consideration as a felony punishable up to five years in prison or$50,000 fine. So, you know, I'm just kind of wondering how they keep track and investigate and make sure this doesn't happen. It seems like, you know, it almost be easy for someone to secretly pay someone to do this, but claim it's an altruistic act. And, you know, websites like matchingdonors.com is kind of an easy place for maybe people to find people like this. So I'm just wondering, you know, how maybe they regulate that this act is upheld.
UNKNOWN:Yeah.
SPEAKER_06:I don't really know how they regulate it. I'm not sure they do. I know someone who I am absolutely convinced he paid his secretary to donate to his wife. And Great for the secretary and great for the wife. I think they look the other way. I honestly think they don't want to investigate very much. Remember there was a situation in New Jersey in 2009. It's almost comical. There was like a racketeering ring of rabbis.
SPEAKER_07:The only criminal case, to my knowledge, is that one. Rosenberg, I
SPEAKER_06:think his name was. Anyway, so he did get caught. he was paying Israelis to come to this country and donate. And for all I know, it went well for the recipients and the donors, but at least the recipients, I don't know if the donors got the money, all the money they were promised, which is always a problem with black markets. And so there were three counts of violating nota that this rabbi was charged, convicted of. Right. No charge with forgive me. I am. I think he was convicted. OK. And yeah. And the and the prosecutor barely he could have been fined slash punished, even extradited, I think, because I'm not sure he was an American citizen. Well, obviously, otherwise, there's no extradition issue. But the point is, they didn't come down very hard on that guy. which makes me think the transplants went well. And so they had the option. And this was a guy who truly was operating in the context of a larger illegal setting, because I think he was part of this other ring. Anyway, I probably am getting a lot of these details messed up, but the gist is that. This was somebody who was convicted of organ trafficking, and even he didn't get a big, you know, the maximum, even nearly the maximum punishment. So if some desperate person like me, because I'll say it on this podcast, I will pay the next person if I have to, you know, if it comes to that. And I try to be nice to my interns, but you never know. And, um, I got a second transplant in 2016, you know, so far so good. But as you know, these things don't last forever. And ideally you die before your organ, then you don't have to get another one. I mean, die at a nice old age, but still your organ is working and you expire before it does. But if not, you know, I don't know. It's going to be interesting. Um, because all my friends now are getting older and, um, they may not, they might not be eligible even if they wanted to. So I pay and you know what? No one would, now that I've announced this to your audience, 3 million followers. Who's going to know? Was there
SPEAKER_09:anything that...
SPEAKER_06:Civil disobedience right here. I just committed civil disobedience.
SPEAKER_09:Go ahead, Autumn. Was there anything that your transplant coordinator asked you kind of related to this to make sure this wasn't happening? I'm fairly certain she didn't,
SPEAKER_06:but I don't know if the... That's an interesting question. I don't know who actually asks that. And I would have lied. But... But in our case, in the hospital I went to, my donor had the same transplant coordinator I did, which worked out great. She was a wonderful lady and she balanced it all. And my donor was clearly very sane. So there was no, everybody acted as in good faith. as could possibly be and was as reasonable as could possibly be. But I think some people would consider that shouldn't be done. And I know in some hospitals, they go out of their way to make sure that the transplant coordinators for the donor are different than the one for the recipient, which I guess makes a little sense because let's say this transplant coordinator really, really, really liked me and was really invested in my getting a kidney. She might have you can imagine, again, not deliberately, but kind of unconsciously maybe downplaying some of the risks when talking about it with, anyway.
SPEAKER_13:Hi, my name's Courtney. I'm also a 3L. And one of my things that I was thinking about when reading through some of your articles was like the emotional health and donors intent. So one of the issues we've discussed before in past podcasts relating to kidney donation was how to go about screening an individual's emotional health for organ donation. So I have like a series of questions about this aspect of donation. First, is the rational person really the person who wants to give away their organs for nothing in return? And second, if the government were to allow for a financial or in-kind incentive attached to kidney donation, would that make one more or less speculative of the individual's mental health and their intentions for giving away their kidney? Third, what sort of things should we look for with regard to emotional And lastly, and this one's kind of a, I'm giving a little bit background with this one but to start off if someone's mentally ill and wants to give away like their home and all their possessions and money. should the charities that accept such donations also have to screen for an individual's emotional health? And I personally don't think that like a charity shouldn't necessarily need to do this. But the thing that kind of prompted me of thinking about this was we allow people to give away all their physical possessions if they want to. And we don't seem to question why a charity organization wouldn't screen people but rather we see this donor as like an amazing giving altruistic person for donating such a huge donation. And of course we can say, you know, giving away your organ is different from giving away all your physical possessions. But I sort of feel like there's reason to doubt that conclusion since somebody can donate an organ and go their whole life with no health complications, but giving away all your possessions and money can leave you open to much more harm for the remainder of your life. So overall, to kind of sum up that last one, I guess I'm wondering if screening for a emotional health for organ donation should be so stringent. Like it makes sense to want to rule out somebody with a history of substance abuse issues or serious mental health conditions that would make us want to question their ability to consent, but should we really be diving that deep into emotional health and potentially exclude donors that are otherwise perfectly fine? And the context I'm thinking about this is more so if we do start to incentivize more people to donate and mental health conditions among millennials and Gen Z are incredibly common. And I would worry that this would be a huge impediment to our pool of potential donors in the future.
SPEAKER_06:Does the rational person, I think I got these, does the rational person want to do it for free? Well, in a way that that horse is long out of the barn. And I would say looking at my two donors, yes. And the fact that, you know, we don't, yeah, I mean, I think you're...
SPEAKER_07:Just to put a spin on Courtney's question, Sally, I think that what she's getting at is that we question the rationality of somebody who's been motivated by money, right? And we worry that they're not thinking clearly. And yet, there are, in fact, a lot of instances of people driven to extreme acts of altruism in ways that are perhaps not fully rational. And there's a screening process, of course, but there's a presumption built into this system that one type of act is presumed to be suspicious and irrational, the one that's undertaken for money, and the other is presumed to be rational. That presumption can be overcome, of course, through investigation.
SPEAKER_06:Well, I agree. I mean, that is how it's looked at. And that pervades a lot of of these taboo issues, prostitution. I think that there is something that is just qualitatively different that doesn't justify a complete double standard. And I think that standard is kind of made artificially double. But... kind of on the other side, I understand one of the main forces that's pulling for this inconsistency is the fact that you have to cut open a human body. I think that makes it very, very, extremely different. And from, I mean, that is a real, that is so different and it's different from most of the things that do and even involve the body, which is sperm and eggs and blood and hair and Breast milk, is there anything else you can buy? Is all those things regenerate. Now a liver regenerates, but that is a massive, that kind of surgery almost makes kidney transplantation look easy. I mean, you're in the ICU for days. If you're an adult and you give half a liver, that's huge. And the mortality rate, I believe it's almost 10 times, granted 10 times something very tiny is still very tiny, but it's higher than kidneys for sure. Now, then your liver regenerates, however, and one's kidney does not. But in the short term, it's a real, it's a risk. Now, it's enough of a risk, doctors do it. But so yes, yes, there is that double standard. I kind of think there'll always be that double standard. It is an interesting question you ask about people who want to give away everything. Now, if they give away everything, this kind of stuff does come back to potentially bite you and that your errors can always question it. But I'm not sure you're talking about doing it in their will. You're talking about doing it in real time. And, you know, I'd actually even want to ask that question maybe of a... you know, of a philanthropy, you know, what if someone says, I'm going to give you a billion dollars and they actually have it in their bank account. And, and they, but they have a billion and$1 in their bank account and no other bank accounts. Are you going to take that money? I don't know. It's a really good question. And I, I, I would really, I consider asking a colleague who works in philanthropy, how they, you know, what do they do? That's an interesting question. I really haven't thought about it. And I don't have an immediate answer off the top of my head, but again, returning to the practical realm, this really is like a parallel universe. The things we accept in so many other domains of life are thrown into question in the case of giving a kidney. And I think too much so. But to be fair, there are these big differences, one of them being cutting into a body. But I don't really, that's kind of a tough one. And then your other question was how much, how intrusive are they? You know, From talking to my two friends who gave me kids, they never felt that they, you know, they didn't say, oh my God, I had to talk to this psychologist or a social worker. And they asked me all these, you know, deeply personal questions. And I don't know how extensive those kinds of screenings are. And then with the millennials, God, this would be the best thing for them. Get them out of themselves. Yeah. Do something incredibly generous and it might cure them. It'd be interesting. That's another question that I can't answer and we'll see. You know, well, these millennials, I'm probably using the wrong generational label because we're into way, we're in the gens, but they grow out of this. I don't know. It's a social media that they finally figure out how to deal with social media. At some point, that'll be interesting. I know there's quite a lot of attention now. If you read the Atlantic every day, it seems there's another article about the health of teenagers and the way social media is ruining it. And I suspect there's a lot of truth to that, but it'll be interesting to see what happens with this generation. So I know that's not really a very satisfying answer.
SPEAKER_07:Courtney, did you have anything else or was that responsive to your question?
SPEAKER_13:Yeah, that was absolutely responsive. I guess one of the, the thing about like emotional health and like my concern about, you know, if we're, we're going to be stringent with, if they are indeed stringent with like screening for emotional health was I think from Martha's podcast or one of the readings from their book, it had mentioned kind of like this broad thing that they look at, like, do you have multiple family stressors? Do you have health insurance? And it was like a bunch of things that, particularly for like millennials and Gen Z, like I guess that's what they're screening for. It's kind of like limiting the pool in a way that I wonder if that could change or if it should change.
SPEAKER_06:I don't know, but she would be the better person to ask in a sense. But I think that people at your, you're in your early 20s, all of you, right? You know, I don't know what the average age of the average person good Samaritan donor is. And I do suspect it's younger than they're more like Josh, but Josh was, how old was Josh? Maybe 25 when he did it. I think people would be outgrowing if they're going to outgrow this phase of, of, of this age of anxiety that, that they starting to do so in their mid, mid twenties. And, you know, look, they all have therapists talk about it. I mean, it's a really good question. It would be a great question to talk about with therapy. Why are you doing this? What do you expect to get from it? You have a tendency to react this way. I'm just saying a therapist should have a sense of of how their patient deals with various kinds of challenges and could say to them, well, walk through all the various scenarios. It could be the best thing for a person to do. Sally, thank you so much for doing this. It was so good to see you. I want to
SPEAKER_07:see you. I hope I get to see you in person. Please come up here. I
SPEAKER_06:know, I will. Well, so nice to meet all of you. And thank you so much for putting so much time and energy and thought into this issue because... Obviously, Kim and I think it's really important. And I mean, it's important on so many levels. And really, when you think about it, short of fishing someone out of a frozen pond or carrying them out of a burning building, where are you going to be able to save somebody's life, you know, in such an immediate way? So I'm not, I'm not trying to proselytize that you should do it, but I'm just saying that's why, that's why anything we can do to make it more possible for people to do it in an ethical, safe way, you know, I'm for. Wonderful.
SPEAKER_07:Great. Thanks, Sally. Bye.
