Martha Gershun & John D Lantos with Jeff Bishop - Kidney to Share

Shane Mullen

Hello, everyone. Welcome. Thank you all so much for joining us for Left Bank Books presents Missouri authors Martha Gershon and John D. Lantos, who will share their new compelling book, Kidney to Share. Gershon and Lantos will be in conversation today with professor, social philosopher, and physician at St. Louis University, Jeffrey Bishop. Left Bank Books is St. Louis's oldest independent bookstore. We would like to thank all of our supporters, the supporters of Martha, John, and Jeff, and everyone for their outpouring of love for our bookstore. Left Bank Books offers curbside pickup and delivery to anywhere in the country, anywhere in the world even. We are very happy to be able to bring our event series virtual. We believe that events are a way to expand your mind and bring in new thoughts to make the world a better place. We hope that you enjoy this event and we hope that you support Left Bank Books by purchasing a signed copy for you or for all of your friends at left-bank.com. Purchasing a signed copy of the book from Left Bank Books allows us to keep our bookstore and staff operating, and it allows us to keep this event series going. So thank you so much for your support. I'm Shane Mullen. I'm the events coordinator for Left Bank Books. I help produce our hundreds of author events each year with a fantastic team here in St. Louis. We will be taking questions from you, the audience, at the end of the event, so you can type your questions as a comment, and you can do that at any point in time as you think of a question. Put it in the comments. Be sure to follow Luck Bank Books on Facebook and YouTube to be notified about all of our fantastic virtual events. We have so many incredible events for May, June, and our adding events for July that are just wonderful and are for readers of all ages. So be sure to follow and pay attention to our event calendar. And now about tonight's book, Kidney to Share. In Kidney to Share, Martha Gershon tells the story of her decision to donate a kidney to a stranger. She takes readers through the complex process by which such donors are vetted to ensure that they are physically and psychologically fit to take the risk of a major operation. John D. Lantos, a physician and bioethicist, places Gershon's story in the larger context of the history of kidney transplantation. and the ethical controversies that surround living donors. Together, they help readers understand the discoveries that made transplantation relatively safe and effective, as well as the legal, ethical, and economic policies that make it useful. Gershon and Lantos explore the steps involved in recovering and allocating organs. They analyze the differences that arise depending on whether the organ comes from a living donor or one who has died. They observe the expertise and the shortcomings of doctors, nurses, and other professionals who describe the burdens that we place on people who are willing to donate. In this raw and vivid book, Gershon and Lantos ask us to consider just how far society should go in using one person's healthy body parts in order to save another person. Kidney to Share provides an account of organ donation that is both personal and analytical. The combination of perspectives perspectives leads to a profound and compelling exploration of a largely opaque practice. Gershon and Lantos pull back the curtain to offer readers a more transparent view of the fascinating world of organ donation. Katie Watson, the author of Scarlet A, says, reading this lively book is like eavesdropping on an honest exchange between erudite friends. The insight of the authors into how our collective ambivalence about living organ donors is enacted in the medical maze they must navigate is revelatory. And Perry Klass, the author of A Good Time to be Born says, Kidney to Share is a remarkably fascinating work, a mix of personal narrative and medical history that brilliantly teases out the most scientific and ethical complexities of modern medicine. This book with its overlapping voices and contributions to a medically suspenseful organ transplant story is at once intimate, educational, clear-eyed, heartfelt, and profoundly moving.

Shane Mullen

And now about tonight's speakers. Martha Gershon is the former executive director of Jackson County CASA, court-appointed special advocates. She is author of Care and Custody, and her work has appeared in the Kansas City Star, the New York Times Magazine, Veller, and the Radcliffe Quarterly. You can follow her on Twitter at M. Gershon. 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 American Journal of Bioethics, Perspectives in Biology and Medicine. and current problems in pediatrics and adolescent healthcare. And you can follow him on Twitter at John Lantos. And tonight they will be in conversation with Jeffrey Bishop. Jeffrey Bishop holds the

Martha Gershun

Tenet

Shane Mullen

Endowed Chair in Bioethics and also Professor of Philosophy at St. Louis University. He also served as the Director of Albert Gnesey Center for Healthcare Ethics from 2010 to 2018 at SLU. He is the author of The Anticipatory Corpse, Medicine, Power, and the Care of the Dying, and just completed work on another book, Chasing After Virtue, Neuroscience, Economics, and the Biopolitics of Morality. His scholarly work explores the medical, political, and philosophical conditions that shape modern medical and scientific theories and practices. And now, without further ado, if you would please help me in welcoming to the screen Martha Gershon, John D. Lantos, and Jeffrey Bishop for Left Bank Books. Hello, everyone. Hi. Hey, Shane. Thank you. Thanks, Shane. Great to have you here tonight, and happy to have authors from both sides of the state here. Really excited to support this Missouri event. Thanks, Shane.

Jeffrey Bishop

uh what a what a joy to be with the two of you uh john and martha and um you know thanks for inviting me to be a part of this and for uh uh writing this book bringing it into existence and you know uh kidney transplantation is something that uh our organ donation is something that most people is is something very obscure and you've brought it into such vivid into the forefront for so many of us in very vivid ways. And the first thing I'm thinking that probably most people out there are thinking, Martha, is what on earth would prompt someone to say, you know, I've got one too many kidneys here. I think I'm gonna just give one of these extra ones away. What was going through your mind here?

Martha Gershun

You know, that is the question that everybody asks. And the truth is it was both very impetuous and a very long standing decision. There's kidney donation in my family background. My dear cousin Anne in Omaha needed a kidney, and in 2002, a family friend donated. So living kidney donation was something I knew about, something I'd heard about, something that was familiar. And I knew the joy it could bring and the ways it could keep a family together by keeping someone alive. But I didn't do anything in 2002 or 2003 or 2004.

Martha Gershun

It took until 2018 when I was reading the Kansas City Jewish Chronicle about a gal, Deb Porter Gill, who needed a kidney. And I thought, now, right now, this is the moment. This is the time. I had just retired from Jackson County CASA. I was looking for other ways to contribute, to make a difference, another project to keep me busy and happy. Our kids were grown. Don, my husband's job was stable. It was possible. And I really think people don't recognize the extent to which point of time really matters. If I'd read that article five years sooner or five years later, I don't know that it would have spoken to me. But that day, it really did.

Jeffrey Bishop

So the stars sort of aligned there for you, having the seed planted a number of years back, and then everything just kind of fell into place. That's very interesting. When you first thought of this, who did you reach out to? How did you even bring this up in conversation? How did this all unfold?

Martha Gershun

The first thing I did is I put the newspaper down and I thought, okay, just because you thought of this doesn't mean you have to do it. Let's take a minute here. By evening when my husband had come home from work, I said, read this article. And he looked up and he said, you're gonna do this. I said, yeah, I think I'm gonna try. I knew that it was hard to match. I understood that in a non-biological relationship, the odds of matching are very low. The article said one in 100,000, and I've heard that number before. So what I really thought wasn't, I'm going to do this. I thought, I'm going to try to do this. and in this case what that meant was calling a phone number there was a phone number at the bottom of the article it said if you want to be deb's kidney donor call the mayo transplant center so the next day i picked up the phone and i gave him a call

Jeffrey Bishop

wow so within a 24-hour period you'd you'd you'd gone from oh this is a great idea everything kind of aligned or it took took a while for everything to unfold and then within 24 hours you were making the phone call that's that's amazing Did they, so what did you say? Hey, I'm ready to give up one of my kidneys. How did that conversation unfold?

Martha Gershun

So it unfolded just like that, because I watch like a lot of medical procedurals, you know, ER and Chicago Med and Grey's Anatomy. And my picture was, I'm calling, they're answering the phone and they're like, oh my God, we have someone for Deb. Oh my God. No, no,

Dr. John Lantos

no.

Martha Gershun

This is what happened. They say, uh-huh. Okay. You know, I started to say, and I had a cousin. Uh-huh. Okay. Please go to the following website. There is a questionnaire. Please fill the questionnaire out. We will be back to you. I mean, the person you're talking to didn't know who Deb was. She didn't know who I was. She didn't care. They basically, their whole job is to get you to the medical questionnaire on the website. So, so I would say the initial contact was a little deflating.

Jeffrey Bishop

Yeah. I guess you're thinking, get Deb here, stat. And that just didn't happen. Right. Yeah. right yeah well uh so you know uh john you know it it's it sounds a little nuts to the average person out there that just think okay within a 24-hour period i'm going to call up and i'm going to offer to give my kidney to someone who is a stranger uh what tells us a little bit about the history of some of this this kind of the kind of exacting way that medical people have thought about this uh over the over the years

Dr. John Lantos

Yeah, one of the things we do in the book is go through a little bit of that history, and we go back to the 1950s when the pioneers were first trying to figure out how to do this previously unimaginable and unsuccessful thing, to take an organ out of one person's body and put it in another. Remember, at that time, they didn't understand anything about histocompatibility. The immunology was primitive. There were not many immunosuppressive drugs and they didn't even know whether they'd need them. And the early experiments in this, the first few people had horrendous courses. I mean, they'd put in a kidney and the kidney would fail and people would get septic and they'd die of infections or they'd immunosuppress them or they'd not immunosuppress. There's a great book about it called The Courage to Fail by Renee Fox that just describes how one after another

Dr. John Lantos

recipients died. The one exception was close relatives, living donors, and identical twins were the best. So the first transplants that worked were either siblings or, well, siblings or identical twins. And a couple of those cases involved minors, 18 or 19 year olds, which was a minor in Massachusetts back then. And the doctors went to court to say, are we allowed to do this? It may be too brutal to take a healthy person and cut out one of their organs. The court had a psychiatrist evaluate the family and the potential donor and made an elaborate argument that, yeah, this is bad to do to a healthy person, but it's also bad if he lets his sibling die, if he lets his twin brother die. And the psychological benefit of saving his brother's life outweighs the medical risk of taking a kidney out of his body. And that then became sort of the ethical paradigm for this. If it's someone you love, if it's someone you're close to, you can do it. But that's the only time. And that was also the medical rationale for choosing a sibling.

Jeffrey Bishop

Yeah, that makes good sense that you care for someone, you love someone. And so we're all entangled in families, right? We're tangled up with the good of the other person. And so it's awfully easy to think through it that way. So how do we move from that to, oh, this stranger is here. What's this all about?

Dr. John Lantos

So the science got better first, so that with a better understanding of immunology and better immunosuppression, it became possible to do a transplant from someone who wasn't so closely biologically related. So then things started happening like a husband would want to donate to a wife, not biologically related. And people would go, ah, but that psychological benefit is there. We're going to allow that to happen. And then somebody would say, well, one of my coworkers needs a kidney. And people would go like, is that the same sort of psychological benefit? Can we justify the risk? And a few places said, yeah, they're really good friends. We're going to let them do it. And then As might have been anticipated, crazy people like Martha started coming forward and saying,

Jeffrey Bishop

I'm going

Dr. John Lantos

to donate to somebody I read about in the newspaper. Or the most challenging ones were when people came in and said, I just want to give a kidney. You must have people who need them. I've read about people on the waiting list. Take one of mine. And initially, every transplant center in the country, first response to that was, refer to psychiatry. This person must be insane. And there were a bunch of papers published in the 80s, mostly 80s and 90s, that described some of the psychiatric evaluations of these people. And we summarized some of them in the book. And the psychiatrists are all very skeptical. Like, why do you want to do this? And the donors would say, well, I just like to help other people and I donate blood and I signed up to be a bone marrow donor. Those are all legal. What's the problem here? And they go like, well, the risk is one in 5,000 people die. And they go like, yeah, that sounds pretty small to me. I'm willing to take that risk. And they're like, are you part of a religious sect or something well I go to church but you know that motivates some of my beliefs and the doctors go like you

Jeffrey Bishop

know

Dr. John Lantos

not

Jeffrey Bishop

everybody

Dr. John Lantos

goes

Jeffrey Bishop

to

Dr. John Lantos

church once you donate a kidney there must be something wrong with you and many times they'd make people wait like go home and think about it for three months or six months before they'd accept them gradually this started to shift in the United States Most European countries didn't permit it. The UK had a law against donation unless you could prove you were a close friend or had an emotional connection. And people would find a recipient, pose for pictures at a bar, and go, look, we're close friends. Germany still does not allow donations unless people are

Dr. John Lantos

emotionally connected. But gradually it started to shift as the outcomes got better and the risks got lower and many places now accept donors who don't have any connection with their recipient.

Jeffrey Bishop

Well, I want to do two things here. So Martha, on this point, first, did they force you to see a psychiatrist? I know the stories, but go ahead and why don't you tell us a little bit about that part of it, because it's humorous.

Martha Gershun

So I had to see three different therapists. when I went to Mayo for my medical evaluation. And I had to send up my own therapy records. So I did two things that scared Mayo on that medical form, that very first disclosure form. They weren't concerned about my medical history. I'm a really healthy person. But I disclosed that I occasionally, out of state where it is completely legal, smoked recreational marijuana. And that really threw up a red flag. And I also disclosed that from time to time, I see a therapist here in Kansas City who helps me when things get tough. She helped me decide that it was time to retire. And these red flags were really significant. So they demanded if I wanted to continue to be screened, that I do two things. One, my therapist was to fax up my entire mental health file. I'd seen the woman like eight times. I mean, it wasn't that thick a file, but okay. Fax up my entire file. And I was to come to Mayo and meet a substance abuse counselor. So these are two of the kinds of obstacles that we talk about in the book. Some are financial, some are logistics, some are more even higher bar, but those two were really problematic. My therapist refused to fax up my records. She said it was nobody's business and that once Deb's and my files were merged as they would eventually be, her team would have access, that who knew who would ever find out those, deep dark secrets I disclosed about my family of origin. And instead she offered to write a letter summarizing our conversations and saying I didn't have a mental health diagnosis. Mayo accepted that, but they wouldn't let me get out of the substance abuse counselor. That was a real problem because it turned out that Mayo doesn't have very many substance abuse counselors. And the only appointment that they could not offer me on the three-day visit that Don and I took up to Rochester for me to be evaluated with that appointment. They wanted me to come back for a second trip to talk to a substance abuse counselor. I spoke to Little Weed on vacation in Colorado. So I'm not gonna tell you what happened. That story ended happily because I am articulate and I am persuasive and I am passionate. And I suspect because I am affluent and white,

Martha Gershun

that I eventually talked my way out of that appointment. I can only imagine that there are circumstances where somebody would have been making that second trip up to Mayo.

Jeffrey Bishop

Well, and what's funny is that now they weren't concerned about whether you were somehow emotionally or irrationally disturbed. They had a different kind of paranoia about something that we finally have outgrown but still on the form there's something there about it you know and so that got you in trouble so uh uh yeah you should have just said no to that question i guess i've learned

Dr. John Lantos

that lesson

Jeffrey Bishop

yeah well uh so let's let's talk a little bit about deb uh did you did you know her before i mean uh how did you come i mean you read about her in the newspaper but i you also had some some crossing paths, if not actual meetings. So tell us a little bit about that.

Martha Gershun

So I had not met Deb before, but I should have. We had gone to the same synagogue. She had raised children there. They had gone to the same religious schools that my son and daughter went to. She had been a prosecutor in the child sex crimes office in Jackson County, Missouri, where I later was an advocate. But despite all those possible ways our paths could cross. I didn't know her. I didn't know her family, though her father had been on the board of the nonprofit that my husband runs. I mean, there were many ways we should have met, but hadn't. I did not meet her going through the initial process until Mayo called. And normally I'd be giving away like the pinnacle of the book, but obviously since I'm here, you all know this happened, I matched. Deb and I did win that one in 100,000 lottery. We were a perfect histocompatible match. John keeps telling me that's such a miracle that that could possibly have happened. After that, I asked Mayo, are you going to tell Deb? I'm still looking for my Chicago Med moment.

Dr. John Lantos

We've found

Martha Gershun

your match. And they said, we won't. You're protected under HIPAA. If you want her to know or if you want to meet her, it's up to you. It was never a question for me. I was not going to be an anonymous donor. I'm not an anonymous person. And I thought this project, and it's a big project, would be easier with a partner. And the obvious partner, of course, is the person on the other side of that kidney exchange. The problem was I didn't know how to find Deb. She lived in another state. She has a very common last name. I Googled it, got all kinds of people. Finally, I had the brilliant idea of looking on Facebook and sure enough, there she was. And I literally, this is how I met my kidney recipient. I messaged her on

Jeffrey Bishop

Facebook. So you literally were probably in the same room with her at some point in Kansas City, but you only could reach out to her via Facebook. That's the modern world we live in now. So it's kind of strange, the world we were in. John, if she hadn't reached out to Deb, she still could have donated specifically to Deb. And I want you to kind of unfold some of the complexities of donor-recipient relations. And then also, this whole new thing we have called these chains, just kind of unfold the complexity of all of that.

Jeffrey Bishop

You're muted, John, I think.

Dr. John Lantos

Yeah, sorry about that. Yeah, donors don't necessarily meet their recipients. It's voluntary. You can donate to a stranger or before you can try to contact them. And although most donations from living donors are what they call directed donations, so they know who they want to donate to. And it's either a relative or a close friend. So most living donations are not direct. arm's length the way this one was. Some are, as I said, take my kidney, give it to whoever needs it. I don't even need to know. And then there's this intermediate one where sort of you want to get to know your donor or your recipient.

Jeffrey Bishop

The

Dr. John Lantos

background to all of this, which gets to the second part of your question, is the dire shortage of organs. So if you have kidney failure, luckily there's dialysis. So that's essentially an artificial kidney and people can stay on dialysis for decades, although it's a brutal, burdensome treatment in the sense that you either have to go to a dialysis center for hemo or do peritoneal dialysis at home. In either case, it's not an ideal treatment. Everybody says a transplant is better. Almost everybody on dialysis wants to get a transplant. They're on a waiting list for a transplant. And there's 100,000 people on that waiting list in the United States now. 12 of them die every day. in the United States. So there's a dire shortage of organs. And even when people want to donate, like Martha, you have to go in and see if you match. And if you don't match to someone you want to donate, usually a loved one, then until very recently, they'd say, sorry, you can't donate.

Jeffrey Bishop

And then an economist who was

Dr. John Lantos

then at Harvard, he's now at Stanford, worked with some transplant surgeons and said,

Jeffrey Bishop

Hey, I have an idea.

Dr. John Lantos

What if I want to donate to Jeff and Martha wants to donate to Shane, but I don't match with Jeff and Martha doesn't match with Shane, but Martha matches with Jeff and I match with Shane. I don't know Shane. I want to save Jeff. I said, how about a paired exchange? You donate. Jeff will get a kidney. It won't be yours. Martha will donate. Shane will get a kidney. It won't be Martha's, but your loved ones will both. survive it will increase the supply side of organs for donation and then once that happened people said doesn't just have to be two people i could donate to jeff martha could donate to

Martha Gershun

shane

Dr. John Lantos

shane's donor could donate to whoever you go down the list you can have six eight ten twelve person long chains that are logistical nightmares since everybody has to sort of donate at the same time and nobody can get sick and all that. One of the questions that raised though, this was an economist who figured this out. And his agenda was, you increase supplies of things by building better markets, more efficient markets. And this was essentially a form of barter, which at the time was questionably legal in the United States. Medicare and the federal government has since tweaked the rules and said, no, this kind of barter is specifically permitted. But it's sort of opened the door to people thinking, well, could I donate a kidney and somebody else donate part of a liver? Could I donate a kidney and get a voucher in case a loved one needs a kidney later in life? Could I donate a kidney and somebody make a contribution to my favorite charity? All different ways of enticing people to donate.

Jeffrey Bishop

Sure. And you're exactly right. The shortage is amazing. And it just prompted many people like Ben Hippen, who is a nephrologist, to argue that, well, look, we need to be able to actually have a real market where there is potentially exchange of funds. Mark Cherry has written very forcefully, very powerfully about this, about the only people not getting paid or not getting some sort of compensation or benefit from an organ transplantation situation is the donor or the donor's family in the case of the deceased donor so they've said hey you know markets do work uh they're both very market minded people uh markets do work you know what what's what's wrong with something like that

Dr. John Lantos

Fascinating question. You know, there are certain body parts that we have vibrant markets in. People sell blood, people sell plasma, people sell hair, people sell sperm, people sell ova. And that's perfectly legal. One thing they all have in common, they regenerate and kidneys do not. And so people get sort of an icky feeling. But if you kind of unpack it, I think comes down to three things, three big concerns that most people have about markets. Inequality and related health disparities, coercion, and quality. That is the quality of both the kidney that's being transplanted and as a result, the chances of success for the recipient. Think of it this way. If you're poor, and there's a market for your kidneys and you need the money. And you get that questionnaire and it says, you're using any drugs, do you have any diseases? I'd say like, if I say yes, I'm not gonna get the money. No, no, perfectly healthy, never smoked pot, never saw a psychiatrist in my life.

Dr. John Lantos

And so you might end up with a lack of transparency people trying to hide problems that could lead to a bad outcome after the transplant. It's also, I mean, the inequality and coercion. I mean, if a market was truly a free market, kidneys would go to the highest bidder. So you could imagine futures markets in kidneys and people bidding up the price, perhaps particularly for rare HLA antigen.

Dr. John Lantos

And that might get a little coercive for people who really don't want to donate but are desperate for cash. So those are all some of the concerns to be balanced against this dire need.

Jeffrey Bishop

Yeah. Well, I mean, and a lot of people will say, oh, we'll work out procedures and policies that would shore up these things to make sure none of those bad outcomes happen. and and yet you know we can we can look at it uh and we see that that people still find ways to to game any system if you know the system you you know how to play the game right and so it doesn't matter what procedures or policies are in place somebody's going to figure out a way to game the system and that that just happens happens all the time but i want to ask martha this question i mean you know martha uh What if you could have been paid for this? I will say, everybody needs to read the book because you paid in a different way. We'll come to that in a moment. You paid with a lot of heartache and ups and downs and things that got in your way a little bit. But what if you got paid for this? Would it have made it feel dirty? How would you have felt about that?

Martha Gershun

I don't think it's something I would have done for money. It was something I did to be an altruist, to feel good about myself. But that doesn't mean I don't think other people shouldn't be paid to do it. I do all kinds of things for free. I volunteer extensively, both my time and my brains and my expertise, that somebody who needs money should expect to be paid for, should expect to sell. So the fact that I was already retired, that I didn't need to work for a living, that I'm financially secure and didn't need the money doesn't mean that somebody else who needs the money, who has a perfectly healthy kidney, just as good as mine, shouldn't be able to sell it. John knows I feel very strongly about this. I'm a real body autonomy person. I believe that sex work should be legalized. I believe that your body is yours. And if you want to sell it for a specific purpose, you should be allowed to. And this is what I always say. We let people do things that threaten their lives all the time for money. We let people go down the mine, even though we know they're gonna get black lung. We let firefighters, cops, we let people go into the 911 building, even though we knew it was probably coming down on them. Why shouldn't someone who needs money be allowed to sell a kidney, but know instead they have to work at McDonald's during a pandemic, possibly getting COVID and bringing it home to their kids. So I find it very disingenuous when we say we're protecting people. How paternalistic that we decide that's protection and all those other ways that people earn money are not.

Jeffrey Bishop

Well, now I have to ask your co-author, a bioethicist about this. So John, what do you think about what Martha just said?

Dr. John Lantos

Well, I think no matter how a market could be structured, there's always going to be an element of the doctors or the health care system setting up criteria by which people are screened and deemed to be acceptable or not. Once you put that in place, you're being paternalistic. No doctor is going to let you donate your heart or sell your heart. Or even if you're a high risk, kidney patient, if they think this is going to be significantly detrimental to your health, they're not going to let you do it. Or they're not going to participate. They're not going to be complicit. And I think that's a good thing. I think we don't want doctors saying, yeah, yeah, you want to die? Sure, I'll cut out your heart. I think that would hollow out the core of the medical profession and take us too far from the ideals of doing what's best.

Dr. John Lantos

for people. So the question is, if there's going to be this sort of paternalistic regulation telling people what they're allowed to do or not do, what should it look like? And I mean, one of the things we talk about in the book is somewhere between the current system and a totally free market would be something where we get rid of some of the barriers that currently exist, including financial barriers. and make it easier for people to donate and not lose money doing it.

Jeffrey Bishop

Well, one of the things that Martha just points to so well in her parts of the book is just all of the barriers, all of the silly little bureaucratic and procedural dimensions, and including her driving all over Kansas City trying to find... dry ice you know you have to read the book to figure this out it was like a you know uh i was it was biting my nails to figure out whether you were gonna find it uh so uh so there are all these things in place that kind of get in the way that are just just the bureaucratic procedures and sometimes nightmares. And I have to say, Martha, you were just so tenacious. And so you were like a pit bull had bitten onto something we weren't going to let go of. And it took that, it seems, at points. So tell us a little bit about that, and then we're going to open it up for questions after you finish here. But you really had to work hard at this. You had to pay in a different way. You paid with a little blood, sweat, and tears, literally. Literally.

Martha Gershun

And

Jeffrey Bishop

urine.

Martha Gershun

And urine. And urine. I gave these people a lot of pee, let me tell you. This system is not set up to make it convenient for the donor. They say over and over again that everything will be scheduled at the convenience for the donor, but they're just lying about that. The truth is that for a distance donor like me, I was six hours away from Mayo. That's how far Kansas City is from Rochester. Time and time again, I had to find ways to get lab results up to them, blood results up to them, urine up to them.

Martha Gershun

In the end, I calculated it mostly because John and I were writing this book. My husband and I, between us, used 10 full work weeks to get this project done. Now for me, those weren't paid weeks. I'm retired, but my husband is still working. That was paid time off for him. That was his entire vacation time for the year. As a generous employer, it worked out. Our out-of-pocket expenses were over $4,000. That was mostly hotels, travel, meals. In our case, my recipient reimbursed us, and that's allowed by law. But once again, not every recipient has the means to reimburse their donor. And not every donor has the means to say, as Donna and I did, this is part of our gift. We can afford this. The system is basically set up so that you cannot donate a kidney unless you are well resourced, intelligent, comfortable with the English language, have good transportation. And maybe that's okay for altruistic kidney donors like me who are just really trying to do a nice good thing in the world. But if you're trying to save the life of your sister or your child or your mother, what right do we have to put these kinds of barriers in place? Every kidney transplant saves private insurance or Medicare over a million dollars in the lifetime savings over dialysis. And yet the only person who doesn't benefit in any way is the kidney donor. who has to go through surgery and pay for the privilege. So that's really why I wanted to write the book. I really felt that if that were brought to light, we might, John and me with our recommendations, be able to make a little bit of headway in the system.

Jeffrey Bishop

Well, very good. I want to remind everybody to go ahead and place comments into the comment section and our questions. And John, just quickly, I mean, what... the bureaucratic pieces that, I mean, anybody who's ever worked in a hospital knows the bureaucratic nightmares and the boxes that are ticked and the hoops that are jumped through and all of that. I mean, what can be done about all of this?

Dr. John Lantos

Yeah, sort of the take-home lesson of the book is a slogan, treat donors like donors. The one thing hospitals, the one department in hospitals that's very good at cutting through that bureaucratic mess is the philanthropy department if somebody wants to give a hospital lots of money suddenly somebody will meet you at the curb and walk you up to clinic and you know make sure you have everything you need and send you birthday cards and take care of you in a reciprocal gift agreement you're taking care of us we'll take care of you uh donors should be treated the same organ donors should be treated the same way instead of being treated like second class patients which is sort of how they're treated now

Jeffrey Bishop

yeah it sort of seems that way i mean they go they go through a lot and they're putting they're taking a risk albeit a low risk and and then to have to drive all over kansas city looking for dry ice you know that this scene that just was like what the hell is going on here you know uh well shane uh i think we're ready to to open it up for questions and comments so why don't you go ahead

Shane Mullen

sounds good uh so first off obvious uh first comment from deborah uh saying i'm deb and i love martha she is amazing in so many ways i am forever grateful for the life she has given me so uh to have like that connection and seemingly and how many actually i don't know how many years ago this was that you 2018

Martha Gershun

yeah

Shane Mullen

okay so a couple so you've been friends now for a few years

Martha Gershun

Yeah, we text and we talk and we Facebook. We're quite lively together.

Shane Mullen

I can see that probably being true. So Alan says, thank you, Martha. Without you, my wife and I wouldn't have such a great friend. You are a mensch.

Shane Mullen

We have Rebecca saying, thank you for giving me my dear friend. So a lot of people... seeming to be friends with either you Martha or Deb, really just showing the kind of long lasting connection that this act can give you. So I don't know if you have seen this in other donors, having that like long lasting relationship built with friends and family of the people who receive the organs. I don't know if you want to speak on that a little bit.

Martha Gershun

Well, one of the things I can talk to about that is I'm also the family member of a kidney recipient. And Cheryl Cooper was the kidney donor for my cousin Anne. The book, my part of the dedication, John got his own part, but my part of the dedication is in Anne's memory and to Cheryl. And I can tell you that I already understood what it meant to have the life of someone you cared for deeply be saved and to have additional weddings and bar and bat mitzvahs and family parties and thanksgivings. I knew what that meant and what that felt like. So I often think people look at me as a kidney donor, but really I'm also the family member of a kidney recipient and understanding how that feels. Well, that'll keep you going when you're driving around looking for dry ice, right? If Cheryl had given up at that stage, my cousin Ann wouldn't have gotten her kidney. So I think I was very motivated by understanding that part of the story. When I was at Mayo being evaluated, we had to go through a class, you know, what it means to be a kidney donor, kidney donor 101. And there were several people

Martha Gershun

in that class who are seeking to give organs to family members. And you could see how desperate they were for this to work because I was desperate to be able to give a kidney and I liked Deb and I wanted Deb to live, but she wasn't my child. You could see the intensity, people trying to save the lives of a teenage kid.

Shane Mullen

George is asking, well, kind of a, so, george says good point about paying the family of a deceased donor what's the downside to that oh of course families might off their least desirable family members and sell their organs but that kind of leads to my question of like how real is the black market and is that just like because of the age that i am and the terrible like horror movies that i was raised with like is it Is it a real thing? And is it something that is as bad as I think it is? Has

Dr. John Lantos

there ever been legends of going to a bar and waking up in a hotel room with a scar on your abdomen? Yeah. My sense is that is not real. I don't know what Jeff thinks, but I'll be interested to hear. I think what is real, there are countries that have legalized markets and kidneys. I ran for many years. I'm not sure if it's still legal in Iran. But what would happen is people would show up with someone who they claimed was their willing donor. And it was hard to tell whether the relationship was, whether the participation was voluntary, whether this person really wanted to do it or not. So in that sense, There may be markets, usually, or there may be black markets, usually with somebody, with a designated recipient rather than organ robbers stealing your kidneys and selling them. I think it would be unimaginable that a medical center in the United States would procure a kidney on the black market, given the kind of stuff that we write about in the book and the careful screening they do. donors in order to make sure that if they're going to do this procedure, the organ that they're transplanting is healthy and safe. For cadaver donors, though,

Dr. John Lantos

the big debate is not so much about markets. I don't think, I'm not even aware, maybe you know this, Jeff, whether Ben Hippen or the other people who propose markets are talking about markets for cadaver donors. People have talked about sort of futures markets for You get paid now to agree to donate a kidney. The tricky thing about cadaver markets and the way we treat cadaver donors different than donors organs from living donors is when you're a living donor, the recipient is alive now. When you donate, you know who it's gonna get. With cadaver donors, you don't know when you're gonna die. So you don't know who's gonna be there. at the top of the list to get your kidney. And so in most countries, cadaver donors are treated as public property. They go into a pool.

Dr. John Lantos

They're allocated not based on the deceased person saying, I wanted to go to George over here, or even I wanted to go to a white person or a Jewish person. They go in the pool and they're allocated based on semi-governmental allocation schemes that prioritize people based on need. And the question is different countries have said your organs only go in the pool if you say I'm willing to be a donor versus some countries that have what they call presumed consent. Your organs only don't go in the pool if you opt out. Therefore, it goes a step further to treating cadaver donors like a communal resource saying even the family doesn't own it unless person has opted out but uh i don't think markets for cadaver donors have taken off

Shane Mullen

well thank you for easing some of my urban urban legend fears i

Dr. John Lantos

can't promise you a hundred percent be careful what you drink i read a lot of mysteries

Shane Mullen

and i like martinis

Dr. John Lantos

it's that shady looking guy slipping into your martini

Shane Mullen

So Sam is asking, has a question. Can a donor be eligible to be a recipient at a later time if needed? Or does becoming a donor take away that option? Also, if there's a match on one organ, will other organs also match? Or is it a one-to-one match specific to each organ?

Dr. John Lantos

So in the first one, yes, you can be a recipient. And in fact, if you've donated by this national allocation scheme, you go to the top of the list. So there is that sort of kind of reward, if you will, for donating. On the matching, yeah, it would be a match for any body part if you're histocompatible.

Martha Gershun

Gee, I hope Deb does need part of a liver anytime soon.

Dr. John Lantos

Each organ has different types of matching, though, too. So livers, it turns out, for some reason, are easier to match than kidneys.

Shane Mullen

We'll get to another question. But Deborah says, or Deb says, but there's no downside to be able to donate your organs, save numerous lives, and leave your family something upon your death. I think basically saying that we should all very much consider being organ, like signing the back of your ID, saying I will be an organ donor.

Shane Mullen

Rebecca is asking, till what age can you donate?

Martha Gershun

So that's a really interesting question. I was worried that I was going to be too old. I had just aged out of being a bone marrow donor. I had been on the bone marrow registry for a very long time. And maybe this is another reason that I was so motivated to call Mayo when I read the story. But when I turned 60, I got an email from the bone marrow registry saying, you have fulfilled your commitment. which basically means you're too old, honey. We won't take your marrow anymore. So when I called Mayo, that was one of the first things I said, which is I'm too old to donate bone marrow. No, no, kidneys go a lot, a lot longer. The most recent article I read about that was a man who was 75 in Austin, Texas, who was a living kidney donor. There was just an article about a deceased donor who was 95.

Martha Gershun

who was an organ donor and the headline said, oldest organ donor in all of history. When I was at Mayo being evaluated, one of the things the nephrologist told me is that there are advantages to being an older kidney donor. A lot of the things that could compromise your health with only one kidney are things like contact sports, football, motorcycle racing, things that people in my age cohort are less likely to engage in. Pregnancy, while it's perfectly possible to have a baby on one kidney, pregnancy is a kidney stressor. And so again, women like me who are well past the age of thinking that's a good idea, don't have as much at risk. And the other thing, and they said this very nicely, which I appreciated, is I have to live less long on one kidney than someone who donates at the age of 18. So if there's any reduced function, any reduced power, I don't have to make it another 50 years. The odds of that are very, very unlikely. So again, they were pretty nice about it at Mayo, but when I said, is my age an issue? They were kind of like, no, no, we like older donors. This is

Dr. John Lantos

good. And age itself is not an issue, but age is associated with lots of other diseases that are an issue. So you would have to have a real age or be healthy. a healthy 80-year-old to donate.

Shane Mullen

Alan's question is kind of bringing up another topic that, or Alan's statement is bringing up another question that I have. Alan says, I've thought about donating as Martha did, but I'm reluctant in case one of my siblings should need a kidney in the future. And I'm wondering what the science is behind, so someone like me who has a history of kidney stones in their family, and very real potential that one of my family members might well i don't know i don't know how bad kidney stones can make a kidney i have no idea i don't know what what what the family history is um but for someone like me who is worried about something like that like if as like i'm on the younger end of the donation spectrum i guess so if i were considering it what would your reluctance as a doctor be to someone like me?

Jeffrey Bishop

Well, this is

Dr. John Lantos

the

Jeffrey Bishop

whole point about vouchers is to try to stop people from worrying about this point. siblings are going to be your best matches right so you think okay well i've got two if one of my sibling needs it i'd be happy to give up one of them especially if there's some chance that you know some kidney disease runs in the family like polycystic kidney disease or something like that something there's real chance of failure people might think that way but i think the voucher systems that we are that john was talking about earlier that are being put into place is an attempt to obviate that as a problem right to get to remove it as a problem so that if you donate now you get a voucher that says, aha, one of my family members might be able to use this voucher. I don't even know if vouchers can be used for other family members, but it's- That's the idea. Yeah, so the idea is to kind of circulate the, to spread the good around a little bit in different ways. And so this would help to get rid of one of those problems.

Dr. John Lantos

And remember, you yourself, if you need a kidney, go to the head of the list, which is the equivalent of a voucher. Just to put the numbers in perspective, I mean, if you do have kidney disease in the family, you should definitely talk to your doctor because your family might have a higher risk of needing a kidney someday. Although you might not be the best donor if that disease runs in your family because you'd just be giving the same disease. But I mean, to put the numbers into perspective, in 2020, there were about 15,000 or 16,000 organs donated, about 30,000 kidney transplants in the United States altogether. So 30,000 out of 300 million people, you're talking the chances that any person's going to need a kidney in any year are well below like 0.01%. Not zero, but the chances that a healthy loved one would need a kidney are blessedly pretty low.

Martha Gershun

And in fact, one of the things people ask me when I said, you know, I'm giving a kidney. Oh, who? A stranger, right? You get a lot of reactions. And one of the very common ones is what if your husband needs a kidney? What if your children need a kidney? Well, I am not anything like a biological match for my husband, right? We match on many things, but not histocompatibility. And it turns out with my blood type, I'm only a match for one of my two kids, right? I mean, you know, we all did those little graphs. in middle school. But nonetheless, and because I understood about chains and other ways to benefit, I talked to both our kids, they're young adults, before I made this decision. And my sort of favorite quote in the whole book is our son, Nathan, who said at the time, mom, I do not think our family should hoard our kidneys. And I realized by his language, that's a little bit like saying, Don and I shouldn't be giving money to charity because the kids might need the money someday.

Martha Gershun

Kids don't need the money today. Other people do, we give money to charity. So in some ways you can think about organs like any other resource and the odds that it's actually gonna be required to benefit one of your family members. Now in very specific instances where you already know, then of course people wait, right? Of course they can serve, but they're very, but they're really quite rare.

Shane Mullen

All right, well, I wanna thank you. all for this really kind of fascinating uh optimistic and hopeful event um because it is really wonderful to hear a story and such a personal story too about like how organ donation can be such a kind of story of happiness and story of success so it's really fantastic to have for you to have written this book and to have done this event with us.

Dr. John Lantos

And thanks to you, Shane, and Let's Bank Books for hosting us. This was really a lot of fun for us and my old friend Jeff Bishop for taking time out of your busy life. You're probably grading papers, but thanks for joining us.

Jeffrey Bishop

It was great fun to be with you all. So I think we should end with this reading, this little phrase, though, from the From the Talmud, that's the epigraph for the book. Whoever saves a single life is considered to have saved the whole world. So I think, Martha, you're in good stead. Thank

Martha Gershun

you all so much. Thanks for a lovely evening.

Shane Mullen

And to the audience watching, I did share the link again for how you can get a signed copy. They are on our shelves now at Left Bank Books. And thank you all so much for being here tonight, for watching this event, and for supporting independent bookstores.

Jeffrey Bishop

All right, have a great evening and we will see you next time.