Taboo Trades
Taboo Trades
Kidney to Share with Martha Gershun and John Lantos
Martha, John, and I discuss Martha's journey as a stranger donor with co-hosts Kaitlyn O'Malley and Caitlyn Stollings (UVA Law '22). Appearances are also made by Nevah Jones, Alex Leseney, Thalia Stanberry, Samantha Spindler, and Tom DelRegno.
Martha Gershun and John Lantos are authors of Kidney To Share, a new book published by Cornell University Press.
Martha Gershun is the former Executive Director of Jackson County CASA (Court Appointed Special Advocates). She is author of Care & Custody, and her work has appeared in The Kansas City Star, The New York Times Magazine, and The Radcliffe Quarterly.
John D. Lantos, MD, is Director of the Bioethics Center at Children's Mercy Hospital and Professor of Pediatrics at the University of Missouri Kansas City School of Medicine. His books include Do We Still Need Doctors, Neonatal Bioethics, and Controversial Bodies. He is Associate Editor of the American Journal of Bioethics, Perspectives in Biology and Medicine, and Current Problems in Pediatrics and Adolescent Health Care.
Something I want to say that continues to surprise me, even though there were barriers, this was a real pain in the ass. This was frustrating and hard and annoying. It was also the most meaningful experience of my life.
SPEAKER_03: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 guests today are Martha Gershon and John Lantos, authors of Kidney to Share, a new book published by Cornell University Press. I really highly recommend this book. It alternates between chapters from Martha and John, with Martha taking readers through a personal account of her kidney donation to a woman who she had initially never met but shared a number of social connections with and whose story she came across in a local media story. John's chapters place Martha's personal experience within the larger context of the history and ethics of living kidney donation. It's a fascinating account. You'll read this and marvel at the fact that anyone would complete the expensive, stressful, time-consuming, and opaque process to become a living donor for a complete stranger, much less consider it one of the most meaningful and fulfilling events of their life. Martha Gershon is the former executive director of Jackson County CASA, Court Appointed Special Advocates. She is author of Care and And her work has appeared in the Kansas City Star, the New York Times Magazine, and the Radcliffe Quarterly. First of all, welcome, guys, and congratulations on the success of your new book.
SPEAKER_06:Thank you.
SPEAKER_03:Thanks so much. And I'm going to ask my co-host for today, Caitlin Stallings and Caitlin O'Malley, to just introduce themselves.
SPEAKER_08:Hi, so I'm Caitlin Stallings. I'm a 3L here at the University of Virginia, and I'm very excited to meet you both.
SPEAKER_02:Nice to meet you.
SPEAKER_09:Hi, I'm Caitlin O'Malley. I am also a 3L here at UVA and also very excited to meet you. Really enjoyed the book. Thanks.
SPEAKER_05:Oh, Caitlin's, wow.
SPEAKER_03:The two Caitlin's. All right. Can we, Martha and John, could we start by just getting the two of you to tell us a little bit about how you know each other and how this really interesting book came about?
SPEAKER_05:Okay. I'm John Lantos. I'm a pediatrician by background and training. And then after completing residency, went and did a fellowship in clinical medical ethics at the University of Chicago, taught there for about 20 years and then moved down to Kansas City about 15 years ago to start a bioethics center at Children's Mercy Hospital, which you can see in my background. I joined a Jewish congregation, a temple in Kansas City, and through that met Martha. That's relevant to the story, as you'll see, because both Martha's individual story reflected her involvement in the Jewish community. And as we've talked about this, one of the questions that's come up a lot is whether people who donate, donate to people like them, people who share certainly family bonds, but also friendship, work-related bonds, and bonds within a faith community. It's a difficult issue to talk about because it implies a sort of in-group relationship favoritism, but I think it was an important part of Martha's story. It's also important for how Martha and I met. We met through our faith community, through the synagogue, where we got involved in a bunch of projects, both liturgical but also social action-related projects. some political campaigns and programs to work with homeless shelters to provide food and clothing and those sorts of things. And so had had lots of discussions over the years about religious issues, ethical issues, Martha worked, well, I'm not gonna steal her thunder. When she told me that she decided to donate a kidney, this background enabled us to engage in the sorts of conversations that I think most people often don't have. I mean, most conversations with someone who's gonna donate a kidney, I think go through a couple of questions about risk and that sort of thing, but we started delving a little deeper. And then as the whole donation experience played out, my perspective as a bioethicist allowed Martha some insights into some of the things she was experiencing during her evaluation and the whole process of planning for and eventually going through the donation. And our conversations were so fascinating to us that we said we should write a book. We both have written books before and
SPEAKER_03:we- We're glad that you guys decided to write a book.
SPEAKER_05:So we took essentially the conversational format and the book then developed as a back and forth between the two of us.
SPEAKER_03:I'll turn it over to Martha to build on that. But I would just like to say that I really, really enjoyed the format of the book. The back and forth between you two is, I think, incredibly effective. And it makes the story both personal, but also broader, right? Because John is able to put, I think, Martha's experience in context. And I am really a big fan of the format of the book. Sorry, Martha, let me turn it over to you to follow up on that. No, not at all. Praise for the book
SPEAKER_02:is
SPEAKER_03:always
SPEAKER_02:welcome. So what John didn't say is that when I first told him, my dear friend, my colleague in arms in so many different ways that I was thinking about donating a kidney, I didn't yet know if I was a biological match for this woman. It was still an idea, a thought experiment. I expected John would say what all my other close friends said. Oh my gosh, you're such a hero. You're a wonderful person. It's fabulous. You would think about it. John did not say that. John was very quiet and I'm not sure it was the first thing he said, but it was at least the second or third thing. I don't know why any surgeon would operate on a completely healthy person. I have to think about that. Now, John always says, I have to think about that. So that didn't worry me too much, but he didn't jump up and down. He didn't pat me on the back. He was someone who said, this is a big deal. We should talk more about this, not as a nephrologist, not as a transplant surgeon, as a bioethicist and informed as a doctor. As we got more and more into it, as I got more information about what was safe and what was not safe, I think John saw my level of commitment and meaning being derived from the process. I'm pretty sure he came around. But I learned a great deal more than I think your average run of the mill altruistic living kidney donor or family living kidney donor gets to learn because of the conversations we chose to have.
SPEAKER_03:Wonderful. So, Martha, can you tell us a little bit, this is all in the book, of course, but I think it would be interesting for listeners to hear a little bit about how you decided to become a donor and how you found Deb. And I do want to return to, at some point, the point that John raised, which is sort of the connections between donors here and sort of, as you pointed out, John, people wanting, you know, giving to people who are sort of, you know, like themselves. Thank you. which it seems to me, as you've pointed out, you know, people worry about in-group favoritism, probably rightly so. But at the same time, you know, it seems that Martha was in some ways quite motivated by the possibility of being able to help someone like Deb, who was someone like her, but who had, you know, they have a shared history and shared ethnicity and religion that built a connection. And so if we're trying to encourage It's not clear to me that that's not something that we should bear in mind. And so I will return to John at some point for that discussion. But Martha, if you could start us off by telling us a little bit about that.
SPEAKER_02:You know, these things always take place at a point in time. There's always... macro context. And for me, that macro context was pretty straightforward. I had just retired. So having spent an entire career first in the corporate world, I'm a Harvard MBA, I run things, big things, small things. Having spent my career there and then in the nonprofit center for the The things that I had done that motivated me to get up every morning, they kept me incredibly busy. Our kids were grown. Nathan and Sarah were launched out of college, had their own apartments. Sadly, Don's and my parents were already gone. We weren't doing elder care. So this happened at a point in time when I had resources, not just money, which we'll talk about, but I had time, I had energy. I had what I think we call bandwidth. And I was sitting on the bed reading the Kansas City Jewish Chronicle which I've read every week for the last 30 years. And there on the front page was a story about a 56-year-old woman, a real cute blonde. If you all look at some of the material we've put out, Deb's a real good looking gal and engaging, big smile and kidney needed. Member of the Jewish community needs a kidney. And it hit me. I was sitting there. I had time. We had money in the bank. We weren't taking care of anybody else. I didn't have any other big projects. I'm a project person. I could do this. But there's something else too. And I think you'll find this with a lot of living organ donors. I had a family backstory. This was not a brand new idea to me. About 20 years before, my favorite cousin in the whole world, and I say that because I have a lot of cousins I love, Ann Goldstein, suffered from polycystic kidney disease, a very common hereditary disorder. She had already had both her kidneys removed surgically. She was getting very sick. The disease had already killed her mother. It had killed her older brother. And Ann needed a kidney transplant. I was very busy then. I was raising small children. I was helping run a big dot-com in a high-tech era. I thought about, could I help save Anne? I would have. I would have done anything to save Anne, but it would have been very complicated at that point in time. And in fact, Anne's not a biological cousin. She's married to my biological cousin. I wasn't the closest thing in the world to a match. Our blood types were incompatible. It was a non-starter. But Anne's best friend in Omaha was a compatible donor. They did a kidney transplant in 2003, and my cousin lived another nine years. So I am someone as a family member who has already benefited from the miracle of living organ donation. I think that's really important part of my story. I knew what this meant to an individual, to a family. I was at the wedding of Anne's two daughters. She was there. The birth of her four grandchildren, she was there. I knew that somebody else could make that possible. So now here, presented to me at the exact right day, the exact right point in time is possibly my opportunity to do the same thing. There's one more thing I wanna say quickly, and then we can absolutely down the road talk about would I have done this for a 23 year old black guy in dreads who lived far away, right? A lot of interesting questions about that. But this is a decision you make in stages. I did not read the newspaper and decide to donate my kidney to Deb Porter Gill. I opened the newspaper and decided to call a 1-800 number to see if I was a one in 100,000 match as a non-related possible living donor. So it's very incremental. This stuff rolls out over time. I didn't pick up the phone and say, take my kidney. I picked up my phone and said, test my blood. small, small interventions that
SPEAKER_03:grow. Wonderful. And in some ways remarkable, right? That from that, that, you know, you wound up being a match, being compatible, being, you know, being healthy enough to donate all of those things. It almost, um, the odds were perhaps not in your favor. John, do you want to add anything to that before we talk a little bit about some of the sort of communications and other sort of logistical hurdles that make up a big part of
SPEAKER_05:the book? Just a brief comment, only to say, having read a lot of stories and memoirs by people who have donated, everybody has a story. narrative is a big part of this. There are very few donors whose story is... I read a lot of moral philosophy and realized that the right thing to do was to, you know, this sort of altruism. You don't hear that much. What you hear instead are stories like Martha's I knew somebody. It was somebody in my community. I had a personal connection. This made sense in terms of where I was in my life. That kind of story raises some interesting questions in moral philosophy about narrative ethics versus more abstract principle-based ethics.
SPEAKER_03:Great. Thank you, John. And that reminds me, just to plug a prior episode from last season, if anyone wants to read an account of someone who sort of does say, I read a lot of moral philosophy and decided that I should become a kidney donor, I interviewed Josh Morrison, the founder of Waitlist Zero and One Day Sooner. And that is not so far off from his story, actually. And it's a great interview. So I just want to recommend that from last season to our listeners. So I am going to turn this over now to Caitlin Stallings first to talk a little bit about some of the communications failures that you document in your book, Martha. So Caitlin, let me turn it over to you.
SPEAKER_08:So one of the things that really spoke to me in the book was the communication failures or maybe even just the lack of clear communication and the lack of any communication at times about the process that you experience at your transplant center. We mentioned earlier that my mother-in-law actually had a transplant in December. So she was a little bit of background about my mother-in-law. She's 40 years old, so she's relatively young, but she has a rare disease where basically her body attacks her own kidneys. And so eventually she needed a kidney transplant. She was on dialysis for a few years. And she originally was looking for living donors and decided that she would rather go with a deceased donor. So ultimately that was what she did. But In the process, she had the same sort of experiences with her transplant center, which was in a completely different location, completely different hospital, but they had multiple times of communication failures or just miscommunication. Unclear communication is probably the best way to say it. So for example, I know you were talking about how your surgery was canceled the night before and that was really hard for you because you had already taken sort of the medication and you were already like in the frame of mind. And she actually had sort of the opposite of that. Her surgery was scheduled apparently, but nobody told her. And being an out-of-town donor or an out-of-town recipient, she actually was not able to get there. So she missed an opportunity to get a kidney. And so that was really hard for her. And also she was told originally that she was put on the transplant list, but she apparently wasn't. So it took a little bit to get her actually even on the list. So I'm interested in hearing your suggestions for ways hospitals could communicate better to kidney donors and recipients so that these problems are less common and that ultimately so valuable kidneys are
SPEAKER_02:not going to waste. Well, I'm going to tackle that from a personal perspective and then I'll let John talk about it from a systemic perspective, which is our various areas of specialty. First of all, that's a heartbreaking story, right? That one scared me when you told me, even though I already knew it had a happy ending. Because Of course, in my case, all the miscommunications were just an annoyance, just a frustration, never put the transplant at risk, maybe because I'm a stubborn person who didn't back out, and they never put at risk the life of someone that I knew very well. I hadn't known Deb when this started. I got to know her through the process. I came to care a great deal about the outcome, but she wasn't my child. She wasn't my parent. And so the emotional cost to me of miscommunications, I think was lower than it can be. But the logistic barriers are extraordinary and communication is a big part of it. My hunch, and this now comes from a lifetime of customer experience work as an MBA, not as a nine month experience as a kidney donor is that transplants are unique in the medical system. They involve supplies that come from a living or a deceased donor. In the case of deceased donation, they have a very fast half-life. Transplant them or they're gone. In the case of living donors, they walk around inside a human body that could get on an airplane and go to Florida. That might be good. It might get you closer, but I could have gone to Timbuktu and been further away. We're not supplies on a shelf, with a 12-year warranty and a 12-year expiration date. So I think the very nature of transplants makes this different, and I don't think hospitals do different particularly well. Someone on another conversation we had at an academic center asked me if I could make one recommendation, and I have a lot of recommendations, and John has even more. Read our book, it's a list of recommendations. But if forced to narrow, my recommendation would have been as a living donor, not the recipient side, but as a donor, I wish somebody had called me once a week, Monday morning at 10 a.m., let's say, for a checkup. Maybe they had no information. Maybe they wanted to double check. Did I get my mammogram? Did they have my colonoscopy results? All the other things I'm doing behind the scenes to facilitate this. But a once a week, 10 minute conversation with an advocate would have, for me, changed everything. I had an advocate. She always answered me when I emailed through the portal, very responsive, but it put all the burden on me instead of regular consistent communication, which in my business experience is what you do if you want to keep a process going. John, do you want to talk more generally about what you've seen?
SPEAKER_05:Sure. With a little warning that my answer will express my deep skepticism about communication in every aspect of modern American medicine. And so, I mean, I sort of see what happens in transplant as sort of a tiny subset of a humongous generalized problem that doctors and healthcare teams and health systems and hospitals are terrible at communicating with patients. And it's particularly egregious and problematic, the more complex the healthcare situation is. So to go on a little tangent here, I'm currently working with a group at Children's Mercy who's doing a study trying to improve the care of children with rare diseases. And as part of that, we have a group of parents of children with rare diseases who meet regularly and we're trying to get the opinions of these, you know, frontline stakeholders is the... term of art for this, tell us like how we could make care better. And the number one thing they say is communication, communication, communication. And along with it, coordination. So most of these kids don't get a diagnosis right away. They see multiple medical specialists. The specialists don't talk to each other. The specialists don't communicate well with the parents and the parents feel lost and at sea. I think Transplantation is a similar example of one of those complex communication and coordination problems in this case, because you have a donor and a recipient and things are unpredictable and keeping both people on the same page through a complicated process is tough. That's true for kidneys. For hearts, it's like a whole different problem. I mean, hearts, there's no dialysis. Many more people die on the list. If a heart becomes available, you need it now. How to orchestrate that sort of transplant is a whole different thing too. And in some ways, the deep background of this is that hospitals and healthcare in general think that Patients should be responsible for doing this just the way Martha was responsible for calling her donor advocate. And we sit back and say, you know, call us if you need us. I think in some ways electronic health records and open access makes it worse. Now we say, hey, your medical records are online. We don't have to call you with results. It's your responsibility. check it yourself. You know, if you have a question, here's the number, but if you call it, you're probably going to be put on hold and routed to four different places and it'll be hard to find the person who can actually answer the question. So it's my deeply skeptical view of why this isn't just a problem with transplants.
SPEAKER_03:Great. I appreciate that. I'm going to turn this over to another student in the class, Neva, who actually has a question about the communication aspects of this particularly.
SPEAKER_10:Hi, I'm Neva Jones, a 3L also at UVA Law. That's a great segue to the question that I had. I wanted to drill down just a little bit about the relationship and the communication specifically between Martha and Deb. So given the transplant center's hip constraints, at times it seemed like it was almost necessary, Martha, that you be in touch with Deb in order to get a complete picture about what's going on. So I'm thinking about, as was brought up previously, when the surgery was canceled the night before, you know, trying to understand whether or not you should stay in the area or whether or not you had time to go back home, things of that nature. Did you feel like having that communication with Deb was key to the process? And is that something that you would recommend to other donors that they have contact with their donies, if at
SPEAKER_02:all possible? Wow, that's a great question. In our case, it works significantly to our benefit. Because Deb isn't a family member, because I didn't meet her in a class and decide to donate to her, we were not together at the beginning of the process. We were only together. put together at my initiative after we found out I was a perfect match. That part makes sense, right? There was no reason for Deb to know that there are 20 people having their blood tested and hearing one by one as they fall off the list, right? Or there's no reason for Deb to think of all her friends who didn't go in to be tested. It better that she should have just gotten what for me was a Facebook message. Hi, I have matched to be your kidney donor. Better that it should be that way. But as we went through the process, because the communication from the transplant center was not erratic, but let's say one way, It helped me a great deal to be able to call Deb. So just for context, I live in Kansas City. The transplant occurred at the Mayo Clinic in Rochester, Minnesota. That is six hours from my house. And Deb lives in Fort Lauderdale, Florida. She grew up in Kansas City, but she'd relocated many years before. So all these things are happening in pretty different places. The other thing that was important, I think, for us is that I was not Deb's first transplant. She had been diagnosed with kidney disease quite young in her very early thirties. She had already had a kidney trans kidney pancreas transplant from a cadaveric donor that kidney had lasted 18 years, which is a long time for a deceased kidney, but now needed to be replaced. The pancreas are still working fine. So the person in my life who knew the most about kidney transplants happened to be my recipient who had already been through the whole process once before. That's a, you know, a unique part of our story, though many transplants are second and third transplants. I will tell you when I, when I launched this, when I first called that 1-800 number, it never occurred to me that my kidney wouldn't last through the rest of Deb's life. It never occurred to me. that people do this multiple times. My cousin had been much older when she received her first kidney, lived nine years and the one kidney did it. But that was information I didn't have until much later. But, and we talk about this all the time, John and I talk about it. What if I hadn't liked Deb? Turned out I did. She was in Kansas City to meet her parents. We went to lunch. I adored her. She was smart. She was funny. She'd worked in child sex crimes. I worked with foster kids. We had a ton in common. She's very outrageous and talks openly about things I'd like to talk about, about sex and about drugs and about the way the world works. And that works for me. Somebody who was very reserved might've found me a little appalling. So that was great. But what if she had been reserved and buttoned down and prissy I would have still continued. At that point, I was her perfect match. I wasn't going to say, forget it. I don't want to go to lunch with you ever again. You can't have my kidney. But it might have changed how I felt about a lot of communication.
SPEAKER_03:John, can we get you to jump in here just on a couple of points that Martha raised? I'd like to get your sort of sense of this. I mean, I think that I share John's skepticism that some of the hurdles here should be. I mean, you know, clearly it's not limited to your experience. But I mean, as Caitlin's story suggests, donors and recipients coming from sort of far-flung locations that are not local to the transplant center is a very common thing these days. And, you know, HIPAA has exceptions that nobody seemed to be interested in searching for here, and I'm sure in other cases. And so I'm just interested in getting John's sense of perhaps what could be done differently within the constraints of those two things in particular.
SPEAKER_05:Yeah, so again, a little bit of deep background on this. I mean, I think one of the things that made my conversations with Martha or our conversations so interesting is she was coming into this transplant thing in 2018, which is sort of 70 years after transplants were first developed, researched, refined, and improved. And because they've gotten so much better, we tend to forget just how weird they are. And how when people first talked about taking an organ out of one person's body and putting it into another person's body, people were horrified. I mean, it was science fiction bizarreness. And like, well, you know, I have some telepathic connection with that person and... you know, will I be exploited? And there, you know, with the cadaveric donors, there's all sorts of debates about, you know, will doctors, you know, kill off people to get their organs to, you know, in black markets in kidneys and with living donors, major concerns about coercion and all this kind of stuff. So I say that as background to say that sort of the idea of trying to build a firewall between anything to do with the donor, whether cadaveric or living, and anything to do with the recipient didn't come from HIPAA. It came from this idea of protecting the donor from coercion, from exploitation, from the recipient calling people up and going, I mean, think of it within families. You know, there are favorites within families. There are empowered people within families. People get exploited and coerced all the time within families. So this idea that sort of the donor's evaluation is gonna be walled off take place completely independent, their privacies can be protected, came from those concerns. HIPAA is sort of a superficial overlay on that that is so easy to solve. I mean, HIPAA doesn't prevent people from sharing information. It just means you have to ask their permission to share information. So add the transparency. this transplant center or any transplant center, a policy that says for living donation, is it okay with you if we share information with your potential recipient? And the person says, yes, it disappears. The fact that they don't do that is interesting and whether it reflects this prior view that we need to protect the recipient from that is interesting. But you could ask the donor if it's okay to share without, and also ask the recipient, is it okay with you if we give your name to the potential donor? So that one I think is easy. As far as then communication and coordination, if that's allowed, I mean, I think centers just have to make a commitment to it. We talk in the book about The difference between the way organ donors are treated and the way financial donors are treated. Every medical center has programs to take exquisite care of their financial donors. A development officer is assigned to them. And if you give something particularly valuable, they send you birthday cards every year. They call you up on holidays. They'll send you a turkey for Thanksgiving. I mean, they'd love you to death. And they do it because they want you to feel well taken care of and your needs are attended to. Some of the more pernicious aspects of this, they also get treated with favoritism in clinical care. I mean, if you need help coordinating your care and you've given a lot of money, the development officer will smooth the road for that. And it's a different topic whether that sort of favoritism is. morally problematic or in what ways it is. But the point for this is if a medical center cares and they want to do it, it's not hard. They know how to do it. The fact that they don't in organ transplantation shows that they don't care and they should.
SPEAKER_03:Yeah, John, one of the things, I assumed that this was your analogy, but Martha, apologies if you're the one that came up with it. The sort of analogy to the philanthropist and sort of how we should create, treat donors as philanthropists was, I thought, a really powerful point in the book. And it is one that I plan to adopt going forward as an analogy. I thought it was really, really good.
SPEAKER_02:That's John's and it's one of my favorite things. It's one reason I'm really glad that we decided to write together. It's a little ironic. I've spent my career in the nonprofit world as a fundraiser, as the person asking for that money. But that analogy didn't come to my mind. The only way I could think about it was from a business perspective, sort of the whole notion of supply chain and how as a living donor, I was both a patient, right? Somebody cut me open. Somebody took something out of me. Somebody stitched me up. Somebody gave me pain meds. But also a piece of the supply chain. So that had always been my metaphor. But when John said, look, they're calling you a kidney donor. What do you think the word donor means? Wow. I mean, it blew my mind. And it's so clarifying about how well people who give money are treated. And I gave an organ. And all I really get are, I get direct mail solicitations from the clinic asking me to give money. I always want to say, I do have a really lovely fleece jacket. I was going to say they gave you some fleece, Martha, I remember. I have a fleece jacket with the Mayo Clinic logo. I wear it every day in the cold. And I do have a framed certificate the day after the surgery. And I do want to say this because it's an example of it being done well. Every single member of my care team. The surgeon, the nurse, the nurse advocate, people I've been working with for nine months, they all came to my room at the same time to present me with a certificate thanking me for my altruism. And I framed it and I cried and it meant a lot to me. So they know how, they just do it too little.
SPEAKER_03:Yeah, I thought that I liked that part of the book. I thought that was actually, as you say, an example of something that was a really nice touch. And it sounded very moving and emotional. So I'm glad that they did that. I'm going to turn over to Caitlin O'Malley now to talk a little bit. We've talked about some of the communication failures. There were other sort of logistical hurdles and the like that you also faced, Martha. And most of us just don't have your organizational abilities, quite frankly. I don't think I do. So Caitlin, I will turn it over to you.
SPEAKER_09:Yeah, I think this actually somewhat builds on the point we were just discussing, but the book talks about all the hurdles that you had to go through to make this donation happen from sending dry ice to the financial side of it and the scheduling. And you actually happened to be in an ideal situation to give this donation and it was still remarkably difficult. And so I guess my question is, the difficulty seems somewhat at odds with the fact that as John discusses in the book, kidney donations are very valuable. Living kidney donations save lives. They're less expensive than dialysis. And so my question for both of you is, why do you think the medical establishment hasn't put more resources or more effort into encouraging these given that they seem to, there's no reason that I could tell that the medical establishment establish wouldn't want to make this as smooth a process as possible. John, you
SPEAKER_02:want to defend the institutions with which you work?
SPEAKER_05:Yeah, at least tapently. I mean, in spite of some of the harsh things I say about the medical establishment, I think all the people working in this system are really motivated to do the right thing, to save lives, to take good care of people emotionally, spiritually, and everything else. So to the extent that the system has problems, I think it's a problem of almost organizational psychology or inertia rather than malevolent motives or callous carelessness. I think part of the problem, again, has to do with the history of this and the history that's led to the current situation where most donations are cadaveric donations. And therefore, none of these issues are directly relevant. I mean, whether you could honor cadaveric donors in a similar way. I mean, you could, but it's not like taking care of a living donor. And among living donors, most are to family members, spouses, and therefore don't quite map on to this treat donors like donors idea that we have. I mean, people who give to a family member, I don't think would think of that as analogous to giving a financial contribution. So it's only this tiny subset that's stranger donor or non-directed or living unrelated, whatever being you want to put it into. And I think as a result of that, transplant programs focus has been on all these other things, which are the vast majority of their transplants. And then this other category of donors is sort of treated the same way by the same institutional inertia that they've developed for other donations. Layer on top of that, the idea that a lot of these ideas about treating donors like donors involve things that are mildly coercive or at least nudges or attempts to persuade or to... induce something that's sort of on the spectrum between gratitude and guilt to say like, you know, we're going to reward you for this. And if you stop giving, you're going to lose all these rewards. And so I think part of the reason relates to this idea, and Martha talks about this a little in the book, that sort of transplant programs don't want to make this seem like something you have to do. So we're going to send you away. We're going to ignore you. We're going to tell you every time we meet, you know, you don't have to do this. You know, this is completely voluntary. You know, you can back out at any time, which I think leads to policies and practices that are perceived as nobody's taking care of me.
SPEAKER_03:Yeah, John, I just wanted to follow up on that because one of the things that struck me and that we talked about as a group a little bit last week was I can imagine and, you know, we need to ask Martha whether she had this feeling or not. I can imagine a sunk cost fallacy taking hold for having gone through. At a couple of points in time, you said, having gone through so much, I'm not backing out now. And so it doesn't seem impossible to me that these hurdles actually have the opposite effect than the one you just mentioned, which is if people aren't committed to get them to just be like, well, it's easy to walk away. In your case, Martha, I got the sense that you almost felt more committed. And I think that would be a natural feeling for a lot of people.
SPEAKER_02:So it's absolutely true that the further along I went, the more in I was. I always talk about the decision at two different points. There was the decision to call the 1-800 number, throw my hat in the ring. Could I possibly, possibly win? be a match to someone to whom I had no biological relation? And could I possibly possibly be medically competent to donate? I thought being 61 might be too old. I'd had gestational diabetes with my second pregnancy. I thought that might rule me out. I was 20 pounds overweight. I thought that might rule me out. I thought I was taking a wild, wild swing at a ball. The second commitment point for me and talking to other donors, The day they called and said, you are a perfect histocompatibility match for this recipient. Do you want to proceed? And when I said, yes, that was it. Nothing. I mean, okay, maybe not nothing, but let's say almost nothing was going to stop me then. Because a whole lot of things happen in the system. Once they have that perfect histocompatibility match, and it said on my record, as John talked about the electronic medical records, you can see in the portal, number one designated donor. It said that. I had been told they would stop testing other people. They wouldn't even test other people for blood type. So I either had to proceed or say I wasn't. Right. Because to say maybe and hang in there when you're not going to is just to postpone the inevitable search for a donor. I could have killed them by just waiting around too long. You have to you have to commit and you recommit right at every stage. I went up to the clinic for three days worth of tests at every test. They say, do you want out? You don't have to do this. But for me, the day they called and said, you are a perfect match. I was all in. John, I see you raising your hand, so I have a hunch you want to tell me. Am I lying based on what you heard me go through? I'm
SPEAKER_05:pulling my hair out at the phrase, I could have killed Deb. You would not have killed Deb if you backed out of being a donor. That is not murder. That is not homicide. That is your choice based on your life.
SPEAKER_02:I hear you, but it felt... I mean, when they said you're a match. But I do want to say, I always felt like I could back out, but I didn't feel like I could dawdle.
SPEAKER_05:But let me back up.
SPEAKER_02:Yeah,
SPEAKER_05:keep going. That phrase triggered me. But one of the things, again, we talk about a little bit in the book, and to pick up on your comment, Kimberly, that these... Barriers could have the opposite effect. There are remarkably few studies of how many people start this process and how many people end up donating. But we found one interesting one from Georgetown, the Georgetown Transplant Institute that looked over the course of a year at how many people sort of went to the website the way Martha did and put in her information and then what happened to them. And it turns out they had about a thousand people and of those 15% ended up donating. Their analysis was not nuanced enough to say exactly why people dropped out, although they did say 30% of the people who dropped out, it was for medical reasons, but another 30% were for other, and they didn't say what those were. And they also showed that of the people who ended up transplanting, it ended up being twice as many white people as black people. So, Are those medical contraindications? Are those a response to these barriers and expenses? How many people are as motivated and stubborn as Martha who say, the more barriers you put up, the harder I'm gonna fight to get through them because I've made up my mind, I'm gonna save Deb's life. And if I don't, I'm gonna feel like I murdered her. versus people who say, I didn't know what I was getting into. This is a pain in the ass. I'm out. You know, I don't want to tell them about my drug history or my psychological problems, or, you know, they found my blood pressures a little off. I could be at risk for this. You know, thanks, but no thanks. We just don't know at this point because there aren't a lot of good studies.
SPEAKER_03:Great, I wanted to turn this over to Alex, another student in the class for follow-up on this. He had some questions that I think will, that's a good segue into them.
SPEAKER_01:Alex? Yeah, hey, I'm Alex Lassini. I'm a 3L here at UVA. And I had a couple of questions sort of regarding this, the way that, well, when I was reading Martha's story, it was, I was struck by how the information, it seemed like was coming really quick and it was hard to follow as the, as the donor, a lot of surprises, twists, things that you weren't expecting. And one of my questions was about informed consent, which is, I don't know, can you even have informed consent in cases like this? Like, for instance, we talked about the sunk costs, is that something that we should worry about that people will get in too far and then think that they can't back out or that they're so mentally exhausted from the process that they're maybe not thinking clearly, things like that. I mean, I would like to have some more information on the psychosocial screening process. Maybe those are some things that, some conversations that occur there. And then my second question was about the, The way that the rigorous screening process might set up the wrong incentives for people who are going through the process. When Martha mentioned that if she had known she was going to have to disclose all this stuff about the drug use, then she would have just lied on the sheet. You know, it's true that a little bit of marijuana is not that big of a deal, at least to most of us these days. But any... screening system that is sort of making you feel like you need to lie about something to get through seems like it's got some problems. So that was another question I had. And if you extrapolate that further, a lot of people will look at that and just say, well, then I'm just not going to do it because that's too much, right? Like you were just saying. So that was my second question.
SPEAKER_02:Well, first, Alex, I really want to thank you for clarifying, and I wanted to be sure people listening to the podcast, the drug use in question was me smoking a couple of joints in Colorado where it's legal on vacation. Which made the whole saga
SPEAKER_03:even more
SPEAKER_02:absurd, Martha. Well, and of course, the question on the survey that I filled out does not say. Do you now and then in a state where it's legal? And I don't think it may be legal in Virginia, but I know recreational pot's legal in DC, right? Right across the border from you guys. That's not the question. The question is, have you ever used recreational drugs? So I'm 61. You guys can guess back when I was in college a while ago, what the environment was like in the world, right? What a ridiculous question to ask a 61 year old. You know, they don't say, Do you take, are you addicted to opioids, right? Do you shoot a pair of one? The question is very general. And then the approach is very broad. But I want to talk a little bit about the informed consent that you raised. I felt like they gave me information all the time. So when I went up to the clinic for my medical psych eval, we were there for three days. I had 25 appointments. So some of them are simple, right? Just do an EKG, you're, you know, The place is like a factory. You're in and out. Nobody really talks to you. But half an hour with a financial counselor, half an hour with a social worker, half an hour with a donor advocate, half an hour with a nephrologist, half an hour with a surgeon. And every single one of them talked to me about risks. So I felt that they covered that extremely well medically and psychologically. They said, you know, some people are depressed after this. Some people, if their recipient doesn't do well, They feel badly about this. But where the informed consent may be a little insufficient is around the logistic barriers. Nobody, I mean, really nobody ever said to me, every once in a while we call the surgery off at 9 p.m. before the surgery, you will go back to Kansas City for a week and hope your husband can take another week off work to bring you back. Now, they probably didn't say that because they also told me at the clinic I'm the first time that it ever happened. But Nobody said, I mean, they said, can you come up here for the medical eval? Can you come up here for the surgery? They never said if the surgery gets called off, can you come up again? So there were hiccups in the road, I think unanticipated from the clinic standpoint too, but a little shocking to me and really shocking to my husband who was managing a pretty big job. My husband's a leader at a major nonprofit in Kansas City. I was retired. but really dislocating for him and his staff. And I'm not sure we were prepared for that. To your question about the wrong incentives. Yeah, I mean, if you put stupid barriers up, you're gonna encourage people to lie, but what if instead we just make the screen appropriate? I mean, what if we don't say, did you ever in the 61 years of your living life ever once smoke a joint? What if we said we are concerned about heroin use, meth use, opioid use, things like that. It's not hard to probably ask better questions questions. And of course, we don't need to rely on people to tell the truth about those things. I think I mentioned I worked in the foster care system for a long time with parents with significant problems, some of them relating to substance abuse disorder. We know how to test for that stuff. They took so much of my blood and so much of my pee, they could have tested for anything. I suspect they did. I mean, they were testing for a lot of stuff. So we don't have to rely on people to tell the truth. What I'm more worried about, and I know we're going to get into this, is that the barriers did not stop someone with my resources. And my resources are great. I have money in the bank. I have a car that works. I can put gas in the car. I have a husband who is able to have a flexible enough job to help support me. I speak English as the first language. I am highly articulate and advocate for myself. I'm highly educated. I present as an upper middle class, white Jewish woman who knows her own mind. That's a bucket of resources to bring to this task. If you take any one of them away or take all of them away, I do not know how someone makes it through the system. And as we know from the data, often they don't. I think the fact that twice as many white people make it through the screen, that's not discrimination on the side of the clinics. That's self-selection based on barriers. And since we know that black and brown people are disproportionately impacted by end-stage renal disease, if you look at the data about that underlying social determinants of health, diabetes, hypertension, obesity, make those communities significantly more likely to need a kidney transplant. And black and brown people tend to have relatives who are black and brown. They might live in communities of black and brown people, churches, friends. If we make this hard for people with any of those disadvantages to donate, we're gonna make it harder for black and brown people to get appropriate kidney care. It's not that someone like me can't donate to someone who's black or brown or Asian. The bloodlines, it's more likely you'll match with someone of your ethnicity, but it's not at all impossible to cross match. But I wasn't going to read about somebody like that in the Kansas City Jewish Chronicle. We know who we know. So what these barriers really do is set up extraordinary inequities in health benefits for kidney patients. And I think that's one of the things that John and I really wanted to clamor about. You should not have to be an affluent white Harvard MBA to donate a kidney.
SPEAKER_03:Great. Thank you for emphasizing that. John, do you want to... I mean, you can add on to any part of that that you want, but maybe you can also, like, why do they care? What are they trying to get at here? Did you ever use drugs, you know, of any kind at any point? I mean, is this a medical question? Is this a psychological question? I mean, it just seems incredibly overbroad, and I'm not even sure what's motivating it.
SPEAKER_05:Yeah, I'm not sure whether this is permissible to do on a podcast, but if I was teaching this as a law school seminar, and maybe this would work for the podcast audience as well, I would throw out the question to you all in the room. How should you screen donors, potential donors? Somebody comes forward and says, I want to give a kidney to this woman I never met. Should you say like, great, we have time in the OR tomorrow morning, let's go. Or should you evaluate them medically? Should you evaluate them psychologically? If they tell you they use illegal drugs, is that a concern? If they say, and I'm just gonna say this hypothetically, that they've only used them in jurisdictions where it's legal, do you believe them? Look carefully at Martha. Do you think she ever smoked a joint in Kansas? Ever? Do you care? Do you want to know about other psychological problems that she might have? Do you care? What sort of criteria should a transplant center have before they take a perfectly healthy person and take a kidney out of them? And if you turn it around that way, I think it's... complex in a way that sort of our polemical telling of Martha's story doesn't quite capture. I think there are people who have perhaps questionable motivations for this. And again, to go back to, which I keep doing, the history of transplantation, the one that's most common is fear of coercion. And who's likely to be coerced? People who are poorer disempowered, who might have motives that are not entirely voluntary, whether because of their own psychological problems or because of family pressures or because the recipient's offering them some money under the table. So, I mean, I think most of these Criteria for evaluating potential donors grew out of a desire to protect the donor. And some of them, I think, have survived for reasons that are perhaps no longer relevant and should be reevaluated. But a lot of them... just need to be tweaked or fine-tuned more than eliminated.
SPEAKER_03:Yeah, I think that's a good point. We did talk about this last week. Clearly, you know, this comes up a lot in your book. It made me think about what's the balance that, you know, we of course don't want people, and Martha, I think that you used the example of your LASIK surgery in the book, and we don't want that, right? We don't want people, you know, as John just said, to sort of come in and say, oh, you know, I would like to donate a kidney, and they say, okay, how about Wednesday, right? I mean, that's too much, but at the same time, I you know, maybe nobody has steps back often enough and questions whether the pendulum has gone too far the other way in some of these instances, right? So that we are, so that now we're setting up barriers or are asking invasive questions that don't really go to somebody's suitability as a donor, or that as Martha's pointing out, they perhaps have other mechanisms of getting at that information, such as, you know, through all the blood tests and the like.
SPEAKER_05:And so in some ways, the fundamental bioethical problem here is who gets to decide. So all of these criteria are basically the transplant center saying, you say you want to donate, we get to decide whether to accept you as a candidate. And the medical evaluation, psychological evaluation, all these things are the transplant center saying, we have our criteria. If you don't meet them, you don't get to choose. And again, to push that to whether that's appropriate or what sort of criteria you would design if you were put on the, you know, transplant center's donor evaluation committee. I mean, what if it turned out the person had diabetes and hypertension and the studies showed that their five-year mortality risk was 30% if they lost a kidney. And they said, I don't care. I want to do this. It's my decision, my body, my property. You have to take me. Do you as the transplant donor evaluation committee say, no, we're not going to permit you to take that kind of risk. We are paternalists. We get to say what's in your best interest. We get to say what we're not going to do. You're rejected. And that's what they do. I mean, for medical reasons or psychological reason. And my hunch is Most people think that's appropriate in some circumstances. Let me give you the most extreme example. Anybody remember Barney Clark and the total artificial heart? You're way too young. When they first developed a total artificial heart, they wanted to put it in this retired dentist's And while he was on the, and this made the news, this was a huge thing, Solo. And while he was waiting to get this total artificial heart, a bunch of people called up the medical threat center and said, I'll donate my heart. You can take it. And they said, but you'll die. And people said like, yeah,
SPEAKER_06:I'm
SPEAKER_05:75 years old. I've lived a good life. I'm willing. Should we permit them? How far do you go with autonomy?
SPEAKER_02:John, I thought you were going to give a different example, and it's one we hear often as a thought experiment, but it goes something like this. Your child is dying. Your child needs a heart. You have a heart. Who among us, and you all are young enough that this probably isn't immediately relevant, but I will tell you, I would give my heart to save the lives of either of my children or my grandchildren. And I believe John would too. And I believe most people would, but the medical profession doesn't do that because you're asking a surgeon, right? So nevermind my flippant comment about dad, but you are asking the surgeon to kill someone. Surgeons don't do that. I've always thought that whatever obstacles I faced and however, what if they told me I couldn't donate? I did have borderline hypertension. I did have borderline high glucose. What if they'd said, no, at least the person downstream who is gonna be impacted was not a family member. What if I were trying to save the life of my child? Then what's a 30% mortality risk? I would take an 100% mortality risk. So this gets really complicated in that balance between familial donors And people like me, altruistic living donors who are just trying to generally do a good deed. I mean, I grew to know and loved him, but I started out not knowing her at all. If it had been my kid, there is no risk to it.
SPEAKER_03:Honestly, there still seemed to be a very big difference to me between saying we won't take a healthy person's heart and kill them versus saying we won't take a donor who has smoked pot once in their lifetime without putting them through extensive drug counseling first. And it's still not clear to me whether the current concern here is a medical one or a psychological one or both. I, of course, can't blame transplant centers for being risk averse. But at the same time, of course, there's a kidney shortage when the hurdles to donation are so high. In any event, I wanted to return us to the important race and class equity issues that Martha had raised.
SPEAKER_11:Hi, thank you. I'm Valia Steinberry. I'm a 3L, and I just want to thank you for mentioning the social determinants of kidney disease because they aren't highlighted enough. African Americans make up about 13% of the population, but unfortunately account for 35%. of people with kidney failure in the States. So my question is what do you think the medical industry's role is in helping prevent kidney failure from happening in the first place? And as well, if you think that campaigning the government for an increase in financial environmental wellness for these communities that are affected should be a part of this strategy instead of just focusing on you know, fixing the problem after it's already occurred.
SPEAKER_05:It goes so far beyond kidney transplantation. I mean, look at COVID and racial disparities in illness and mortality rates and everything else. I mean, in some ways, the answer to the question is easy. The medical profession and the healthcare system have not just failed, but have been complicit and culpable in perpetuating disparities based on socioeconomic, however you want to call it, socioeconomic status, race, social determinants of health, because the American healthcare system doesn't do prevention. I mean, our whole system is designed and designed financially dependent upon adrenaline-soaked crisis interventions that are sexy, dramatic, look good on television, and generate a lot of revenue. And, you know, there aren't a lot of TV shows about obesity prevention programs. There's lots of TV shows about organ transplants and emergency rooms. Interesting question is, does any other healthcare system do it better? I mean, is it because of our crazy decentralized fee-for-service system? And the answer is, I think some do it a little bit better, but there's similar disparities in most of the socialized systems of Europe too, because they reflect a deeper embedded institutional racism that dare I say, critical race theory is just teaching us how to think about and analyze and changing it is enormously difficult. But I think it's starting to happen. Here I'm a little optimistic, starting to happen in ways that have not happened before and perhaps through at least better analysis of the role of race, racial disparities, systemic racism, and the importance of social disparities, we might be able to sort of alter the course of this in the future.
SPEAKER_02:It's an incredibly important question. End-stage renal disease is caused by a wide variety of things. So polycystic kidney disease is the single one factor. It's not more than 50%, but it's the single one factor. That's inherited and it's not racially based. It happens across populations. There are things like kidney cancer. Somebody has their kidneys removed. There's kidney injury that can happen from COVID. That can happen from a football accident. It can happen in a car accident. But most end-stage renal disease is caused by some combination of obesity, hypertension, and diabetes, which we know are linked to social determinants of health and we know are linked to income. So why don't we tackle that? Well, as John said, we're not very good at tackling underlying causes of disease. We're not very good at tackling alcoholism. Instead, we'd rather do liver transplants. We're not very good at getting people to stop smoking, though we're a little better about that. But we'd rather do heart transplants. We are not good at preventive medicine. But I also think part of the problem is that different parts of the system are responsible for preventive medicine. Hospitals do kidney transplants. What we need is government funding of better neighborhood infrastructures, of subsidized daycare, of the ability to get green vegetables within two blocks of your house of bike lanes and low-income neighborhoods, right? On and on and on. You all know the list. Those aren't hospitals' jobs. Those are government jobs. So we have two different groups. Hospitals do what hospitals do. They're not very good at crossing over into another lane. And when you mentioned this, I wanted to tell you how I have thought about this a lot since we have been talking to people about kidney transplantation. I worked in the foster care system for a long time. I mentioned that it's another example of where we do not provide financial support to low-income moms so that they can safely care for their kids. Instead, we wait for a crisis, take the kids away and put them in a very expensive foster care system. So Instead of providing diapers, providing food, providing respite care, providing free childcare, which are expensive, but they're nothing compared to the cost of the foster care system, we wait for the crisis. I think it's a really sad commentary that we aren't very good at getting ahead of problems. Now, I want to give one shout out to a group that I think is doing good work in this area. It's the National Kidney Foundation. I joined the regional board after my kidney transplant experience because I wanted to be closer to that world. And I thought it was going to be all about transplantation because that was my narrow lane. The National Kidney Foundation is primarily working. They work a lot on transplantation, but primarily working around population education, around eating, exercise, diabetes management, getting people into primary care, right? You can't have your diabetes... Diagnosed or monitored if you don't have a doctor, Medicaid expansion, all those other things. So we're seeing some nonprofit work in that area. Government's crappy at what the government's crappy at. And it's probably not quite the hospital's job. I know that's not very reassuring. It's just how I've come to think about it.
SPEAKER_05:There are some genetic risk factors that are specific to African-Americans, a gene called APOL1 that puts them at higher risk if they donate a kidney, well, a higher risk of developing renal failure. So if you donate a kidney, you're at even higher risk. So it gets back to this question of who gets to decide. And there's a big debate in the literature, should potential donors who are African-American be screened with this genetic test? And if so, Should they be rejected as a donor based on a test showing they're at higher risk of developing renal failure, or should that be a decision that's left up to the donor? And they're simply informed, you have this genetic marker, means you're at higher risk. Do you still want to go through with this? And so it sort of bridges the gap between what might be thought of as a social determinant, what might be thought of as the evaluation process, and the new genomics, which is going to enable us to stratify by risk much more precisely.
SPEAKER_03:Thank you, John. So I'm shifting topics just a little bit now. One of the things that I really appreciated in the book is the point made, especially by John, that there is a lot of discussion about whether compensating donors could safely improve the situation with the kidney shortage. And that's a conversation in which I have been an active participant. And there were a lot of questions about that among the students. But as you point out, there's very little discussion of these other inconveniences and indignities that are also real barriers that sort of should be less controversial to fix. And one of the things I really appreciate about your book is sort of getting that conversation started. Having said that, you guys seemed to us at least not completely hostile to what is sometimes referred to as the removal of disincentives. And I'll let you talk about that. But one of the things that is sort of, and I'm going to turn this over to Caitlin and Caitlin to sort of highlight as they would like. To a lot of us, this distinction between providing an incentive and removing a disincentive was not as clear as some of the bioethics literature seems to assume. So I'm going to turn it over to you two to handle this question however you would like.
SPEAKER_09:Yeah, I actually wanted to bring up one of the things we discussed in class, which is this question of pure motives. So there's some discussion in the book about what motives might get you turned away. And there's concern that compensation would be coercive. But as we discussed earlier in the podcast, what would be more coercive than your child dying? And so there seems to be a need for a psychological benefit in order to abide by the Hippocratic oath. And I suppose my question is overall, what benefits we can consider valid? Is pursuing one's religion valid? Is saving one's family member valid? Assuaging one's own guilt or succumbing to familial pressure? We may not think of these as like things that we want to encourage, but they do provide a psychological benefit of their own. So how do we make that distinction?
SPEAKER_02:Wow. Okay. So that's good and important. I will tell you when we wrote the book, the only thing on my mind other than chronicling my experience and complaining about what I thought was bad customer service and bad supply chain management was to argue that there were significant financial disincentives to donating. And I think those of you who read the book know my husband and I spent more than$5,000 out of pocket. That's Travel, that's the cat sitter, that's food. In addition, he lost 16 days of work. And my husband's a highly compensated executive. I was retired, but let's just say we shouldn't value my time at zero. I would prefer we didn't value my time at zero. You have to be very well resourced to make that happen. In our case, my recipient was also very well resourced from an affluent local family. Her father wrote a check for that out of pocket. cost. He reimbursed us. That's legal. And even though Don and I had said we'd pay for this out of our vacation fund, blah, blah, it was very important to that family. And it was very gracious and very lovely. And we took a different vacation instead. But no one should have to have$5,000 in the bank or no recipient should have to have$5,000 cash in the bank on top of all their other medical expenses. No one should have to spend 16 days of work uncompensated. And in my case, if I've been a working person, I've been up to 40 days because I took a while to recover and all those other things. So just removing financial disincentives gets you to a pretty big number.$20,000,$30,000,$40,000, just removing financial disincentives. And that's where I was when we wrote the book. Now, John and I have been out doing the book tour and talked to so many people, heard from people like your professor and others. And I've started to get lured into the attraction of a compensation system. And there are, John can give you a lot of arguments against it. He is not as lured as I am. But there are some pretty good reasons to consider that too. The first is that we don't have enough kidney donors. 12 to 13 people die on the waiting list for a kidney every single day. What amount of money would we pay to save those lives? It's not zero. So there's that. The other thing, and Caitlin, I was so pleased that you mentioned it earlier in the podcast. Kidney transplants save money. That's an astounding sentence. Heart transplants do not save money. Heart transplants cost money. But because we have dialysis and because dialysis is very expensive, every kidney donation saves money and probably saves the government and the taxpayers money because most kidney care is compensated by Medicare, even if you're under 65. So we save money every single time we get someone to donate a kidney. People do make money on this. Don't kid yourself. The hospital makes money. I learned that the average wages of a transplant surgeon are between half a million and a million dollars. They're making money. Organ procurement centers make money. In the case of cadaveric donations, organ procurement executives make millions of dollars a year. Everybody's making money, but the one person who gives up an organ. So I've started to think through these conversations, maybe it's an okay thing to do in order to get us the kidneys that we need to save the lives we need. So I have one more thought that I had yesterday talking to our daughter on the phone. Our daughter was a sociology major in college and has lots of smart things to say. And she got me thinking, not advocating, she wasn't advocating, but she got me thinking, maybe the other reason we should let people sell their organs is pure equity in the job market. There are people without skills to make a lump sum of 20, 30,$50,000 in any other way. There are people who need money to pay rent. There are people who need money for diapers. There are people who need money to keep their children in their homes and not going into foster care. There are people who need money to pay for college and dare I say law school. Who are we to say that selling an organ is an inappropriate way to work? gets into a lot of the other things. I heard your podcast with Al Roth last week, a lot of other repugnant markets like sex work. But there are many other things that we let people do to earn money, to feed their families, to pay the rent that are much more dangerous than donating a kidney. Every time somebody goes out on a fishing trawler, every time they go down in a mine, and in fact, every time they get in an airplane to fly it, it is more dangerous than what I did. And yet paternalistically, we preclude people from earning a living that way. So I've started to think there are two lines of possible argument. One is we need more kidneys. We'll get more kidneys if we pay for them. And there's money in the system to pay without costing anybody anything. There's squish in the system. Two, it's a legitimate form of work that we should allow qualified people to participate in. Now, John is much more skeptical than me about this.
SPEAKER_05:Way more skeptical. So every one of your arguments takes the existing world with all of its irrationalities that we've talked about, all of its racial disparities that we've talked about, all of its capitalist inhumanity that we've talked about and says, well, this is the world. So, you know, Poor people get screwed. Why not allow them to get screwed in this market the way we screw them in every other market? Just for fun, let's say, let's take the argument about how it's going to save Medicare money. It's going to save Medicare money because Medicare decided many years ago it was going to pay for dialysis and now spends billions of dollars providing dialysis that we could say instead, let's use that money to prevent obesity. And that would reduce diabetes and it would reduce racial disparities in end-stage renal disease. And if we did an economic analysis, we might find that that's a much better way to spend the money than spending it all on dialysis and transplants and buying organs from poor people to perpetuate this system that's fundamentally unjust.
SPEAKER_03:John, what about the reimbursement of Martha's out-of-pocket expenses? Do you think about that differently than you think about compensating donors? If the answer is yes, we're going to have follow-ups for you,
SPEAKER_05:by the way. So, given the system as it is... Having donors pay to be donors, I think, just adds insult to injury. And that seems like sort of a forgivable payment on the margins to facilitate the least unjust solution in a country. pervasively unjust world. So yeah, tepid support for them.
SPEAKER_03:Tepid support. Okay, with that in mind, then I'm going to turn to another student in the class, Samantha, who I think had some really nice insights about, you know, out-of-pocket expenses are one thing that Martha spent, but she spent a lot of other things as well in terms of opportunity costs.
SPEAKER_00:Samantha, can you? Hi, my name is Samantha Spindler, and I'm a 2L at UVA Law. And something that I was wondering about was the opportunity cost. So in addition to obviously the financial burdens of like your husband missing work and stuff like that, there's also a lot of opportunity costs in terms of stress of planning around weddings and vacation and just a lot of free time that's given up throughout the process. And I was wondering if Is there a way to balance the ethical and non-ethical considerations with money when it comes to potentially just paying for the opportunity cost of missing things that people don't get reimbursed for? I don't
SPEAKER_02:think there's any way to reimburse people for the worry. You know, you said, as you all know from reading the book, at the same time we were doing all this, our son and daughter-in-law were planning their wedding. And I was very worried about how this would impact that. I don't think that's, there's not a financial way to compensate people for that. And the hospital could not have helped with that either. So I think there's some burdens you just take on to do this good deed. I come from the CASA world, the Court Appointed Special Advocate world, where volunteers work with kids who are in the child welfare system. You all might encounter that if you take some courses in child welfare law. There's no way to reimburse those volunteers for the worry that they have for those kids and those families. So you take that on. What absolutely we should do, and I think it's maybe the core premise of the book, is just get rid of some of the logistic barriers. I had to figure out how to ship my blood sample on dry ice to the clinic. Why should every donor individually have to figure that out for their location? Why don't we have some national contract with Quest Systems? And you go give your blood there and they know how to ship it, right? There's a business answer to that problem. And a lot of my advocacy around this is let's pick those things up one by one and just solve them. Another one of them for me, a huge opportunity cost about Two weeks before my case went to the transplant committee, which decides if I'm worthy, I got a call and said, we don't have the records for your mammogram, your pap smear, and your colonoscopy. And I said, well, you never ask for them. Oh, we didn't? Of course. That's always required. Get them to us tomorrow or you're going to miss your slot at the committee. Well, I happen to have those three tests done. done by three different providers. I had to run literally all over town. This was in a pre-COVID world. Get copies, get things faxed, get things scanned, get things sent up. It took me a day. I had a day. I was retired. But why, when I was approved to be a donor, didn't they give me a checklist? Again, I'm a business person. I believe in checklists. These are the things you will have to do by which dates. And I'm a very organized person. And I think most donors can be quite compliant. And I would have gone through the list And I could have had that pap smear colonoscopy and mammogram results sent up any time over many, many, many months. Didn't have to be a fire drill. It was only a fire drill because I didn't have a checklist. So I think the answer to the opportunity cost is less probably about financial compensation because I think that's hard and more about streamlining a system to reduce the friction.
SPEAKER_03:Well, Martha, I just want to follow up on that a little bit because, I mean, it's only hard because we make it hard, right? So, you know, minimizing the opportunity cost is something that clearly would be helpful to the system. And as you guys have highlighted in the book, you know, doesn't involve paying donors. But I guess at the end of the day, right, when we say that in John's defense, he only gave tepid approval. by the way, for sort of the removal of disincentives. The distinction between reimbursing your out-of-pocket expenses and recognizing that donors are going to have numerous opportunity costs, they're going to give up time, they're going to incur risk, it just doesn't seem like a bright line rule to me. Now, whichever way that cuts is up to you, right? In John's case, it may cut in favor of saying, yeah, that's why I'm only tepidly in favor of it. But, you know, in other cases, it seems to me that this is an argument for some sort of flat rate to donors that takes into account all of these various expenses, both sort of out of pocket and otherwise, that we know that donors are going to face. And, you know, I don't like phrases like kidney vendors or sellers or even compensation. Donors have done a wonderful and courageous and helpful thing, and showing our appreciation for that, including in financial ways, doesn't strike me as being crazy, especially once we start down the path of saying you have some real expenses that we would like to reimburse. I don't know. John, do you want to scream at me now?
SPEAKER_05:Oh, I wouldn't scream at you, but I would thank you for your very insightful comments and just point out the fact that those taboo words that you said, I can't remember exactly what they were, but something about them bothers you. I mean, I think... That's something that bothers almost everybody, even supporters of markets, about unfettered markets. It is a clue. that something problematic is going on here. And I mean, one example of the ways that we try to sort of work around it, just like I try to give, you know, I'm troubled by the idea of markets, but I'm also deeply troubled by the idea that donors are paying money out of pocket for this altruistic act. Almost everywhere where people have developed systems to compensate donors, they haven't been through the same government programs that pay for transplants. So in the United States. There are a couple of private foundations that compensate donors for all these costs. They're supported by philanthropy, but they're sort of separate from the official system. The official system, CMS, has developed its own program to reimburse some donors for costs, but they means test the program. So they say, oh, you know, if you're poor enough, We're not going to make it hard, but we're going to not make it easy to get money for doing this if you're not part of the deserving poor. Israel has the highest rates of living donation in the world. Part of the reason is because they have systems to cover all of the donors' costs. But even though Israel has a national health insurance program that covers everybody, for most costs, this system to cover donors is a private foundation. So it's not done through the system. So there seems to be this idea that we want to make even taking care of donors sort of a virtuous voluntary act rather than build it into the system as if we're acknowledging that it's morally unproblematic. I mean, your taboo trades idea, I mean, what makes them taboo is, I think, some concern that there's something morally tainted about certain transactions and pushing us to try to understand what exactly that is and whether it reflects important moral considerations or whether it's just irrational superstition or outdated ideas.
SPEAKER_03:That is a semester-long conversation. I'll just put it that way. Okay, I'm going to have one last question. I mean, really, we should have scheduled two podcasts with you two, because it's your fault for writing such an interesting book. We have way too many questions. I am going to turn it over to Tom for our very last question. Yeah.
SPEAKER_04:Hi, I'm Tom DelRegno, I'm a 3L. And it seems in the course of our readings and discussions, we learned that stranger donors are quite rare. And in reading about your story, Martha, and you mentioned it before, I became interested in kind of the traits of stranger donors and the potential sources of donor altruism. It seems some are more general, sort of like religion, upbringing, character. And then others are more specific, as in your case as well, that you had someone close to you who received a donation. And It seems like using these traits can allow us to have more successful donations and more efficient outreach if we use them to perform targeted efforts. And I'm wondering if that seems like something to you where the positives might outweigh the negatives, or if it seems that just the ethical concerns are too great.
SPEAKER_02:Wow. So I'm going to tackle that first because I have a hunch this may be one of those those pro-con things with me and John. You all can see how much fun it was to write the book with someone that you respect and honor and don't always agree with. It's its own pleasure. One of the things they told me at the clinic when I was going through the psych eval is that the number one attribute of living kidney donors, whether they're stranger donors or familial is not altruism, it's optimism. That people who do this generally are happy, forward-looking people who believe in best outcomes. If you're a catastrophizer, if you're a pessimist, you might not do this. It comes from a place of hope and optimism. So when they said that, that resonated for me because that's very much my personality. I don't know how we would screen for that, obviously. Even if I were designing a high-level marketing campaign, go after the optimists. That seems complicated to me. But the other thing, they did ask me if I belonged to a church or a synagogue, and I said I did. In fact, I had met my... my recipient through the Jewish community, I said, is that common? Do you get a lot of Jews here? And they said, we get a lot of people who belong to faith communities. Whether that ties to the optimism and the hope, or it ties to altruism, or it ties to the idea of community, they didn't know, and they acknowledged that there aren't many studies on it. But they said, it's most common that the people sitting here at the table you're sitting at have a faith connection in terms of community. I absolutely think it speaks to the ability to do targeted marketing. For instance, we know we need more donors of color because we need to save more recipients of color. We also know that there are very strong faith traditions in both black and brown communities. Could we do education at churches? Could an individual recipient seeking a donor, and we didn't talk about that very much today, but people do Facebook posts, they do billboards, they put signs on t-shirts and on cars. Could we encourage people to use their faith community as that marketing opportunity? There's some really specific ways the Jewish community has organized. to recruit both altruistic and family donors. There's a group in New York called Renewal that works in the Orthodox Jewish community, which- I've done some work with Renewal, Martha. They're an amazing group. You may know more about it than I do, Kim. They were helping a relative of mine who eventually got a kidney from a daughter, but they were helping her in her search. I think they're quite effective.
SPEAKER_03:They are remarkably effective and have done, I think, a lot of good work.
SPEAKER_02:And as John mentioned, the country with the highest living kidney donation per capita is Israel. Part of that is they have a national health care system. Right. That helps. Part of it is that reimbursement compensation honoring system they have set up. But let us guess that part of it is also that it's a pretty homogeneous community, that these are people helping people with whom they have some affiliation or coming out of a religious tradition that believes in Sadaka in Israel. in giving
SPEAKER_03:back. They also have a priority system. I mean, they are providing incentives. Let's be clear about that. They're not financial, but...
SPEAKER_02:They've gone after this. They've decided to make this work, right? And again, it's a small country. Much easier to do anything, including, let's say, COVID vaccinations in a country the size of Israel than the country the size of ours. But John, I think you would want to, and I would hope, be able to speak to the question of where marketing starts to hit coercion and informed consent, where we have some problems.
SPEAKER_05:I mean, that's a tough one, but I'm not sure that was really the question. I mean, I think it was more whether tapping into these existing moral communities where people feel some special obligation to take care of each other, which seems to be a part of every faith community, is, I mean, you could say, is it effective marketing, which kind of gives it a negative taint, or could you say it's calling on people, you know, the higher angels of our nature, I mean, that we, you know, want to help other people with whom we share values and a cultural heritage. I mean, that gives it sort of a positive spin. And I don't really see a problem with that. I mean, one of the passages in the book that sort of touches on this, in the early days of kidney transplantation or the early decades, transplant centers were much more skeptical about this. people who wanted to donate to a stranger or even to someone who they weren't related to. The UK actually had a law against it for a long time. But one of the articles that we cite at length was a transplant program that had everybody who wanted to do that interviewed at depth by a psychiatrist who had veto power over it. One of the psychiatrists wrote a paper about one of these interviews where he was interviewing a young woman who wanted to donate to a non-directed, just say, take my kidney and give it to whoever needs it. And it turned out she was a deeply believing Christian. And the psychiatrist found this deeply problematic that her motivations were rooted in her religious beliefs. And I just kept hammering away as a godless psychiatrist might about like, you know, you must be part of a cult, you're being coerced, you've been brainwashed. And she kept saying, no, no, these are my deeply held religious beliefs. And I feel like I'm doing the things that reflect my own deep personal values. And you could see these two worlds just... kind of clashing, and eventually they said, you know, well, we might approve you as a donor, but you have to wait six months and come back and tell us that your wishes are, you know, durable or something. But it illustrated for me the kind of skepticism that many secular people have towards religious values. I think religious people who hear them say, like, you don't understand anything about what motivates them.
SPEAKER_02:Something I want to say that continues to surprise me, even though there were barriers. This was a real pain in the ass. This was frustrating and hard and annoying. It was also the most meaningful experience of my life, short of bearing and raising children and having a successful marriage, but the most... meaningful external act of my entire life. It has brought meaning. It makes me feel good every single day when I see a Facebook post from Deb or run into a family member of hers in the Jewish community. This opportunity that I was able to take advantage of was remarkable. That being said, I wrote an entire book saying that, and John and I have been on book tour, and we say it to whole lots of people. To the best of my knowledge, I haven't inspired a single person to step up to do this. I don't think it's the kind of thing that comes that way. It comes because something triggers for you. A family or a friend needs help. As you all know, only about 10% of living organ donors are altruistic. We didn't know our recipients. 90% are people who knew someone. So we've been all around the country and I've been telling people this is the most meaningful, important experience of my life and everybody should enjoy these benefits. And that has inspired literally no one to benefit in this specific way. I think that tells you a lot about the ways we might and might not think about connecting around living organ donation.
SPEAKER_03:We can't follow that. With that, I think I should thank you both for your time and for coming to discuss your wonderful new book with us today and let you go. You guys are great. Thank you so much.
SPEAKER_05:Yes, great discussion. Great questions.
SPEAKER_03:What a great and informative session. I feel like I could have spent all day talking to Martha and John. The conversation raised so many medical, ethical, and other issues that there was no way to cover them all in a single podcast. In any event, make sure that you get their book, Kidney to Share, from Cornell University Press. I think you'll enjoy it as much as I did.
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