Kidney to Share - Martha Gershun and John Lantos
December 27, 2021 · Romanell Center for Clinical Ethics · 1 hr 25 min
About this recording
An archived video recording featuring John D. Lantos from Romanell Center for Clinical Ethics.
- Format
- Video recording · 1 hr 26 min
- Recorded or aired
- December 27, 2021
- Institution or outlet
- YouTube / Romanell Center for Clinical Ethics
- Archive identifier
- V064
- Speakers
- Audience member 1, Martha Gershun, Audience member (Garrett; surname unresolved), Jim Delaney
Transcript
147 passages
- 00:00
Event host
All right. I think it might be fair to say we can begin. It's five after. So welcome, everyone, to Romanel Center for Ethics. We've got a talk on live organ donation, specifically an example of live kidney donation that one of our two presenters, Martha Gershon, has has donated to a stranger. We also have John Lantos, who is an MD as well. And he's going to be presenting. He's got a PowerPoint slide here, as you can see. We're going to have about 45 minutes, give or take five or 10. And then we'll go into Q&A after. And I guess feel free to take it away.
- 00:53
Dr. John Lantos
JOHN LANTOS, MD, Yeah, thanks, John. And it's great to be here, even virtually. um martha and i wrote a book we're very excited we want to tell the world about it and it's a unique book because it's it grew out of conversations that we had um uh starting around the time when she first told me that she had uh was thinking about donating a kidney and was going to get an evaluation and i am a pediatrician and a bioethicist so had followed some of the bioethical controversies and discussions about organ donation. In many ways organ donation or organ transplantation and bioethics kind of grew up together. They're both disciplines or fields or practices that started in the 1950s and 60s. Both, and their histories are intertwined in interesting and complicated ways.
- 02:03
Dr. John Lantos
Organ transplantation was pioneered before people understood much about histocompatibility, or they understood much about the immunologic mechanisms of projection, or they understood any of the pharmacology of immunosuppression. And so in the early days, the only successful transplants were between identical twins or eventually siblings. And in the early days, most of the outcomes when anybody strayed beyond that were pretty abysmal. Again, because people didn't understand this. There were debates about live donors versus cadaveric donors. Kidney or organ transplantation really was the stimulus for creating the concept of brain death. Brain death wouldn't have been possible without mechanical ventilation. Mechanical ventilation also became the focus of lots of bioethical controversies. When to start it, when to stop it, what it means to be dead.
- 03:11
Dr. John Lantos
And so I was sort of familiar with this. But then Martha and I have been friends for a long time. And when she started going through it, the discussions deepened. And the more we talked, the more we realized that we had a story to tell that might be of interest to somebody besides just us. And so the book goes through some of this history of transplantation, but also talks about the current situation as the culmination of the evolution of both these biomedical advances, as well as changes in the law and changes the way we think about some of the ethical issues that we're going to talk about today. Just to set the stage, I'm not sure who's all in the audience here, but if people don't know this, We're pretty much just going to focus on kidney donation for today. There are
- 04:08
Dr. John Lantos
similar issues with other organ transplants, although each one has its own unique quirks. I mean, one of the things that makes kidney donation unique is the availability of renal dialysis. So if you're waiting for a heart transplantation, well, now there's left ventricular assist devices. Even artificial hearts, livers are probably the only one that there's no technology that can replace. If you need a liver and you don't get it, you die. If you need a kidney, you can go on dialysis. But dialysis is not a perfect technology. It's both very burdensome. Hemodialysis is three times a week. Peritoneal, you have to do every night. It does not get you back to your usual state of health. And in fact, about a dozen people in the United States die every day on the waiting list for a transplant. There's nearly 100,000 such people. You can get kidneys either from a dead person or from a living person. Dead ones are called cadaveric transplants. Living ones go by a number of names, but living kidney donation, most are from, oh, and just to highlight this desperation, people who are waiting.
- 05:25
Dr. John Lantos
John McNeill, use all sorts of techniques and publicity to try to find a donor, this is a picture was exhibited in the Spencer museum in Lawrence Kansas somebody had commandeered a billboard in a. John McNeill, patch of prairie and painted over the advertisement saying I need a kidney it's a measure of the desperation some people feel as they're waiting. Mark Benthien, SCEC- All these people on the list there aren't enough kidneys to go around so in 2020. Mark Benthien, SCEC- There were 17,000 different people who donated their kidneys two thirds of them were kind of Eric so people donated them by checking the box on their drivers license or speaking to their loved ones, making an advanced directive saying i'm willing to donate about a third work from. living donors deceased donors can give both kidneys some more transplants came from the deceased donors but of the living donors most were a biologic relative or a spouse or a life partner some were paired we'll get into what that is later in the talk
- 06:39
Dr. John Lantos
and only a small percentage less than 10 percent were anonymous that is people who said uh i just want to give a kidney i don't care where it goes or i don't need to know who the recipient is uh and about 1300 were called directed unrelated that's where martha's donation would fit in it was to a specific person she didn't know at the beginning but as you'll hear uh got to know a little better one feature of living kidney donation that is the focus of a lot of the book and a focus of much of the way transplant centers respond to people who come forward and say i want to donate is the question of whether somebody who would donate to a kidney donate a kidney to a stranger must be crazy Now, you'll get to hear Martha, and you'll be able to judge for yourself soon. But in the history of living organ donation, as I said, in the early days, most were from identical twins or siblings. The reasons for that were technical more than ethical. People didn't understand the histocompatibility, and so people who weren't related They weren't able to prevent rejection. The kidneys failed. It was a horrible death, and nobody wanted that. But as the technology got better, as the understanding of
- 08:15
Dr. John Lantos
immunorejection and immunosuppression got better, it became more and more possible to go farther out from those close relatives, from identical twins to siblings. Eventually, the next circle was spouses who are not biologically related that are deeply emotionally related or more distant blood relatives like first cousins or second cousins, uncles and aunts. And as the eligibility criteria expanded, questions began to be raised about whether somebody had to be directly related or have an emotional bond to the recipient. in order for the transplant to be ethically acceptable or legally acceptable. It became technologically feasible to do this. But in the 1980s, as the technology improved, some people started coming forward and saying, I just wanna donate to anybody. I wanna help suffering humanity and transplant centers for the most part, responded by referring these people to psychiatrists. The psychiatrist would evaluate them looking for coercion, looking for psychopathology, looking for some explanation for what seemed, by the prevailing mindset of the day, to be a masochistic act, an inexplicable extreme of altruism. And there's a bunch of great articles that we summarize in the book by some of these psychiatrists who describe their evaluation of these radical altruists. And in the descriptions, they are searching for psychopathology. I mean, it's almost as if they know it's there and they're just determined to find it. But mostly what they find is deeply held religious beliefs of people who say I'm motivated by
- 10:22
Dr. John Lantos
my deep desire to help suffering humanity. I know there's 100,000 people or whatever the number was then, many people on the waiting list. I have two kidneys. I only need one. I want to help. And the doctors would say, you could die. And I say, yeah, but the chances are small. Doctors would say, you have small children. And they said, yeah, so do firefighters. So do soldiers. And they would compare the risks. often the transplant centers would send people away and say, you have to wait three months, have a cooling off period, reflect on this crazy decision you wanna make. And it turned out almost nobody ever changed their mind. And they came back three months later and eventually transplant centers views started to shift
- 11:11
Harvey Berman
as a
- 11:11
Dr. John Lantos
result of these psychiatric evaluations, as a result of the persistence of the desires. And then as a result of these things, started to get done more and more, and more and more living donors who were emotionally or biologically related gave their kidneys. People started doing long-term outcome studies and showed that this was not probably, in fact, excessively risky. People can live long and happy lives with one kidney. And so the risks of doing it became quantifiably less. John Kuruvilla – Experience with such donations grew and we've seen a gradual shift over the last 3040 years where from sending these people away transplant centers are often now trying to recruit or attract. John Kuruvilla – Living donors and and people in need of a kidney are also trying to. John Kuruvilla – publicize their fight and hope that someone will come forward so. John Kane, With that as background to where we were around 2017 let me turn it over to Martha. Martha Ozonoff,
- 12:28
Martha Gershun
Thanks a lot john I appreciate it, I always feel like you raised the bar for me sort of like you know will I sound crazy so i'm going to do my very best to send anything but i'm in December of 2017 I was. sitting in my bedroom reading the kansas city jewish chronicle which is something i do once a week and i read about deb porter gill she's she's the good-looking blonde in this picture a 56 year old woman who had grown up in kansas city where i lived had gone to the synagogue which i attended and where i met john and who needed a kidney deb had had a transplant in her late 20s a kidney pancreas transplant from a cadaveric donor. She'd been diagnosed with kidney disease and then diabetes while she was in law school. And that kidney had lasted a very long time, but now it was failing. And the article made it very clear that she probably did not have long enough to live on the transplant waiting list to wait for another cadaveric kidney. She was going to need to find a living donor. Her family members were not a match. Her children were adopted. They were not a match. She was reaching out to the community. And I'm reading this article thinking I
- 13:51
Jim Delaney
could
- 13:51
Martha Gershun
maybe do this. I knew that the odds of matching with someone who's not related to you are really quite low. They're extremely low. And I knew probably I wouldn't be a match. Probably I wouldn't get the chance to do this. but I also felt like I should try, that the trying itself would be a good deed. In fact, it might be one of those really great things in the world where you do all the right things and then you're never called upon to pay up.
- 14:20
Martha Gershun
Kidney donation was not strange in my life. It was part of my family's history. I had a cousin in Omaha, Nebraska, who had polycystic kidney disease, my cousin, Ann Goldstein. And she had needed a kidney. Family members were not able to donate, but her best friend, very close family friend, was a perfect match. And so quite early in the world of transplantation, 2002, certainly much earlier than now, Anne received a kidney from her best friend, Cheryl Cooper, and went on to live another nine years. Those nine years were very important to my family. It meant that Anne could come to my son's bar mitzvah, my daughter's bat mitzvah. We spent Passovers and Thanksgivings with her extended family in Omaha. And so I knew what it was like to be the family member of someone who benefited from a living kidney donation. But that was really all I knew. I didn't know the details. I didn't know the science. I didn't know how much trouble it was going to be to do this pretty nice thing. So part of the book and part of the reason John and I wanted to tell this story is that it turns out there are a lot of barriers to donating a kidney. John helped me see how many of those barriers come about because of the early thought that organ donors are probably nuts and we need to protect them from their own altruism. I think a lot of the barriers are just because bureaucracies improve slowly, move slowly. Once they get stuck in something, it's hard for them to switch. But my own background brought a lens to this process. I have an MBA from the Harvard Business School. My entire career has been in service marketing, both in the for-profit and nonprofit sectors. I did a lot of work in the customer experience field, quality control. I care about how things work and how easy they are to get done. And as I went through this process, I came to think that if we want more people to be living organ donors, and you saw from John's numbers that we absolutely need more people to be living organ donors, we shouldn't make it so darn hard. So John, if you want to switch, slip the slide, we'll start talking about some of the barriers that I ran up against. I'm not talking about medical barriers. I'm not talking about barriers that were in place to protect my health. I'm talking about the silly stuff. So I'll tell you about my two favorites. One happened very, very early in the process when Mayo found out that I was a blood match, not even a perfect match, just a blood type match. Beth Greene- Before they would run all the histocompatibility tests on my blood, which I assume is a very expensive thing to do, and so they don't like to do it unless they're going to move forward. Beth Greene- They were concerned about two things I had checked on my questionnaire that web questionnaire which I filled out when I first offered to be an organ donor. Beth Greene- The first thing they were very concerned about is that under the question have you ever used recreational drugs, I put. Yes, I occasionally smoked marijuana. Now, this
- 18:02
Martha Gershun
could have been the Third World War. Never mind that pot is legal in 23 states. Never mind that they never asked me if I drink liquor. For all they knew, I downed three bottles of vodka a night. The fact that I occasionally smoked a joint was very upsetting to the system. And before they would even test my blood to see if I was matched, I had to agree that under all circumstances, to move forward, I would speak to a substance abuse counselor. I was moderately offended by this. I'm an upstanding citizen. I work. I'm retired. I have a volunteer life. I give to charity. I pay my taxes. And if now and then I want to have a joint, it didn't seem to me that I had a substance abuse disorder. But even more distressing, because I said, Sure, if that's what it takes to save Deb's life,
- 18:59
Martha Gershun
sure. It turns out they didn't have any available appointments for me to talk to a substance abuse counselor. They apparently refer a lot of people to this department and it was a capacity constraint. And so during the three days that I went to the Mayo Clinic for my medical psychological evaluation, I underwent 24 tests, 24 appointments, kidneys, heart, lungs, psychiatrist, social worker, financial counselor, surgeon, education, all of those things, they couldn't find an available appointment for me to see a substance abuse counselor. And their demand in order for me to donate a kidney was that I return to the clinic six weeks later at my own expense. We're talking airplane, hotel. It would have been time off work if I had been working for money at that time. to have the substance abuse counselor appointment. This was before COVID, so they weren't doing so much telehealth. Maybe now they would do it on Zoom, but back then they wouldn't do it on Skype, which was the pre-COVID version of Zoom. They wouldn't let me see a substance abuse counselor in Kansas City and fax the results. They wouldn't accept a drug test. Basically, unless I presented my physical self in this city, which is six hours away from where I live if you drive, and about that long if you fly. they weren't going to let me move forward.
- 20:26
Martha Gershun
I was very concerned and very upset and very annoyed. I didn't say no because I was trying to save Deb's life, but I did complain pretty passionately and I would like to think articulately. As it turns out, they removed that restriction and told me that they decided I did not have to see a substance abuse counselor after all. but one can't help thinking perhaps that is because I am educated and white and articulate and middle-aged and I don't wear my hair in dreads and all kinds of other things that might mean that a young black male possible kidney donor would never be let out of these restrictions. It's pretty clear you can see how this leads to health inequities on a pretty significant scale. uh one of the other uh barriers i checked on the box that from time to time i saw a therapist fabulous psychologist here in kansas city helped me decide when to retire uh helps me untangle things related to my family of origin when i get stuck i don't have a diagnosis to the best of my knowledge and i don't see her very often but i i did check that box and that was very upsetting and they demanded that she fax over my entire file. When I called my therapist to ask about that, to sign the HIPAA release forms, she refused. She said it was none of their business, that our conversations about my family and my life and my concerns did not bear upon my ability to be a living organ donor. And they didn't want it to get mixed up with Deb's files. Once my file goes to the transplant committee, these things start to marry. And then it was basically nobody's business. And she offered to write a letter saying I didn't have a diagnosis, summarizing her findings and send it. And they did accept that. So you can see that time after time, when I push back using the resources at my privileged disposal, I could push past the barriers. But one has to wonder why they exist at all. So I'll tell you one more quick story. I know it's John's favorite and I don't want to leave it out. Very late in the process, after I had been approved to be Deb's organ donor, I was deemed healthy enough and sane enough and financially capable.
- 23:01
Martha Gershun
And my kidney function was very good. Apparently I had great kidneys all my life and didn't even know it. As we got very, very close to the date of the transplant, I got a lab kit mailed to my house from Mayo. There's a good example of a lab kit on your slide. There's a federal law that says before you can be a solid organ donor, 28 days before the surgery, you must be tested for hepatitis and HIV. And that makes a lot of sense, right? You would not want to give an HIV or hepatitis infected organ to someone who's going to be on immunosuppressant drugs for the rest of their life. The very act of trying to save them could kill them. I got that. And I didn't mind going to my doctor and having my blood drawn, and I didn't mind taking the box to FedEx and having it sent. But it turns out this particular blood sample has to be sent on dry ice. So I don't know about all of you, but I had no idea how to ship on dry ice. And it turned out that neither did my doctor, neither did the local grocery store where you could buy dry ice and 20-pound slabs, but you wouldn't want to start chopping it up because that wouldn't be very safe. This stuff burns like hell if you touch it.
- 24:14
Martha Gershun
I called FedEx for help. What they told me is that it's a federally controlled substance and it can explode the airplane if you don't pack it properly. I became more and more concerned. When I called the Mayo Clinic for assistance, they basically said, not our problem. If you want to come up three days early before the transplant, more travel, more time off work for my husband, more hotels rooms, we can just test you then. or you can figure it out.
- 24:46
Martha Gershun
So I'm a problem solver, right? I've made my whole career solving problems that look intractable and I dug in and sure enough, I found somebody who sold medical transport dry ice pellets. I worked with a specialist at FedEx far from my home who agreed to help me package it. I devoted hours and hours to this project and eventually got my non-hepatitis, non-HIV infected blood up to the Mayo Clinic within 28 days in order to be tested. But you have to ask yourself the question, what if I weren't retired? What if I didn't have a car? What if I didn't have gas? What if I didn't speak English as my first language? What if I had three children at home who required childcare? What if I had an older parent who required elder care? All the things that get in the way of people being able to successfully jump over these hurdles, I was uniquely positioned to bust through the barriers. I really had every resource at my disposal, but there are lots of people who don't. And given that in this country, kidney disease disproportionately affects people who are black and brown, it disproportionately affects people who are lower income. It seemed quite ridiculous to me how hard it was to try and save someone else's life.
- 26:08
Martha Gershun
So, because I bitch to John a lot and because he's a good friend, he said, let's write a book about that. And hence the genesis of Kidney to Share. John, you want to tell more about our story?
- 26:30
Dr. John Lantos
Yes. So
- 26:34
Dr. John Lantos
a large Part of the focus of the book is on these barriers, unnecessary barriers, bureaucratic barriers that Martha has been talking about. But one of the interesting things is that much of the debate about increasing the supply of organs for donation has not focused on those barriers. Some have. Some has. And there have been reports by national commissions that identify the burdens and costs to donors. There's been some public policy. trying to lower those costs. There is a program now within Medicare to help offset some of the expenses of living donors, but it's means tested, so it only helps the people who fall below the threshold. And they can get a little assistance for travel and time off work. It doesn't cover the whole cost of
- 27:30
Dr. John Lantos
John Krinsky CCNY- Most people's transplant experience but but it's a step in the right direction, but one of the interesting things relevant to my work in bioethics is that instead of. John Krinsky CCNY- Doing the kind of work that Martha identified as crucial that is lowering barriers facilitating transplant making it easier for people who want to donate much of the focus has been instead on. The options sort of at the other end of the ethical spectrum saying why don't we create markets for organs.
- 28:06
Dr. John Lantos
Many economists say you know you want to increase the supply of something raise raise the price and you'll eventually find a sweet spot where more people will be willing to give their kidneys if you pay them more money. Many ethicists and many transplant surgeons find that problematic. Ethically, it's commodifying the body from a purely
- 28:33
Dr. John Lantos
medical rather than ethical perspective. It also raises questions about whether people might be motivated to lie on their intake forms. Martha disclosed that she smoked pot. She disclosed that she saw a therapist, but if she needed the money and was it standing to gain $10,000 or $40,000 for a kidney, you might not want to tell them you smoke a joint now and then. You might not want to tell them you see a therapist. You might get somebody else to donate blood and ship that on the dry ice. You might do all sorts of things that would lead to problems down the road. And so both pragmatic and ethical arguments have come out against markets. And so far in most countries in the world, it's illegal to sell your kidneys. Interestingly, it's not illegal to sell some other body parts. There are ova for sale and plasma for sale. People can sell their hair.
- 29:35
Dr. John Lantos
But so far, solid organs have not entered the market. But what has happened instead, which is pretty fascinating, is that There are lots of pseudo markets growing up. And some of these were actually conceptualized by economists. In fact, an economist who's now at Stanford, Al Roth, won the Nobel Prize in economics for coming up with the idea of paired and then eventually chain donations. He is a proponent of markets. He thinks a well-regulated market would be even better. But since, as a matter of policy, that was a non-starter, he came up with this idea, which in his mind is a barter market, but
- 30:28
Dr. John Lantos
is different enough that it slid under the radar of policymakers and has been endorsed by many bioethicists who oppose kidney markets. And the idea is, how can you increase The supply. Well, let's say I want to donate to Martha, but I'm not a match and somebody else wants to donate to a friend or loved one and they're not a match. But their donors a match for Martha and I'm a match for their recipient. So you have what's in the bottom left here, the paired exchange donor one gives the recipient to donor to to recipient one both people donate both recipients get Morgan everybody's better off everybody's happy.
- 31:08
Dr. John Lantos
And that was Robert Hechtman, Jr.: implemented and done in many places medicare actually had to change the law to specify that this was not a market exchange. Robert Hechtman, Jr.: By fiat, even though most economists would say it is, and the fact that it is then eventually led to expansion of this market. Robert Hechtman, Jr.: As you can see, on the right, the parent exchange became what's called a chain donation or instead of just two people doing a crossover exchange like that you can have really. uh uh any number you want limited only by the logistics so somebody donates to recipient one donor one to recipient two to the recipient three etc until the last one comes back to um uh it closes the loop so that every everybody gets a kidney everybody donates and everybody's better off
- 32:08
Dr. John Lantos
um That then led to people who said, well, I want to donate now, but I don't have a recipient in mind. If I donate to a stranger, can I get a voucher in case one of my loved ones needs a kidney sometime in the future? Those programs have now been implemented. And so the camel's nose under the tent of letting market forces dictate the types of donations that will be allowed has happened. Rory McGreal, PhD.:: The these are all out there now, and you have to ask sort of what sort of exchange would not be permitted or at what point would you have to say. Rory McGreal, PhD.:: Everything is being exchanged except actual cash let's call a market a market and why limited to all sorts of non cash methods of reimbursement when those non cash methods work, just like cash and.
- 33:09
Dr. John Lantos
fairly increase the supply of organ. So we talk a little bit about that, although in the book, we focus more on lowering barriers rather than increasing incentives. Back to you, Marta.
- 33:28
Martha Gershun
Thanks. This is my favorite slide. I mean, I like all your slides too, John, but this is my favorite slide.
- 33:35
Martha Gershun
As you can see, this is me and Deb. the day after surgery uh i was up and walking two or three hours after surgery um but she wasn't quite ready to receive me and so we so we waited another day uh you all can't see the best part of this picture which is that at the foot of deb's hospital bed is um a bag attached to a tube attached to deb filling with golden urine urine being manufactured by what was formerly my left kidney and is now Deb's primary working kidney. When I walked in the room and saw that, I knew it had worked. I knew what the miracle was. That happy outcome was not a foregone conclusion. Like many transplant stories, ours had quite a few hiccups along the way. Um, by far the most dramatic, uh, occurred, um, the night of our first transplant attempt, uh, my husband and I had driven up to Mayo and, uh, I passed all the tests the day before that HIV blood testing had been fine. Um, my heart was fine. My lungs were fine. Everything that had been fine before was still fine. Um, they sent me back to the hotel that night with a bottle of laxative. and a bottle of soap. And I really hoped I wouldn't confuse them. I tried to do my best to use them properly. 8 p.m. I chugged the laxative. 8.30 I got in the shower, scrubbed with the red antiseptic soap. 9 p.m. the phone rang. It was the transplant fellow on call at the hospital. They had checked Deb in and she was seriously ill and they were canceling the surgery. for the next day.
- 35:36
Martha Gershun
I was pretty freaked out. They couldn't tell me very much, even though this woman was literally about to get one of my body parts put inside her. Our records were still separate in a HIPAA like kind of way. So they couldn't really tell me what was wrong with Deb. They couldn't tell me the prognosis. They couldn't tell me anything that was happening. All they could tell me was don't bother to check in tomorrow morning at 5 a.m. for surgery. I, of course, blurted out the first thing that came to my mind, which is, but I already drank the laxative. This did not move them at all. They did not seem as concerned about that as I was.
- 36:17
Martha Gershun
We tried to go to sleep that night. I woke up about two in the morning because this is what happens when you've just drank a whole bottle of laxative. and logged on to my computer. And I saw that Deb had posted to her CaringBridge site to tell her friends and her family what was going on. And I was able to read that what had happened is a routine scan showed shadows on her lungs. They didn't know what it was, but if it was an infection, they could not take the risk to flood her body with immunosuppressants, which is what you do when you get a transplant. and they were calling off the surgery until they could get infectious medicine in to see what was going on. By the next morning, I was finally able to call someone on my team, my donor advocate at the clinic, who said they'd never had one called off at the last minute like this. They'd had them called off before, but never the night of. She didn't know really what to tell me other than I could go home, I could hang out in Rochester, Minnesota, we would have to wait and see what was happening um
- 37:27
Martha Gershun
we elected to stick around for a while it was a yom kippur weekend for those of you who are jewish you know that that is a date you might not choose to travel during my husband would be fasting we certainly didn't want to drive me me having pre-laxatived and him being fasting it didn't sound like a good time to hit the road um We waited a couple of days, got a little more information, and eventually went home to wait for them to try and get Deb better.
- 37:54
Martha Gershun
That's another one of the stories about the transplant center sort of forgetting my role as kidney donor. They called and said, Deb's been cleared. She's medically set. We scheduled the surgery for Wednesday. And I said, but but it's Monday and you need me there Tuesday morning for labs. They're like, yes. And I said, you want me to drive all night long to get there in order to do this? And they're like, aren't you here? I said, no, I live in Kansas city. It is on my chart. Um, this body part, which you need is attached to a human being who happens to live somewhere else. Uh, they actually moved the surgery date that obviously wasn't gonna work for us to drive through the night. I didn't think it was safe or smart. Um, And they did, they postponed the surgery until we could get there. But it was one more example of this very unique role of the living kidney donor. You're a patient, of course, right? They're about to put you under anesthesia and cut you open.
- 39:00
Martha Gershun
But you're also part of the supply chain. And I think it's hard for transplant centers to think about that and manage that. because normally parts of the supply chain are just sort of sitting on a shelf and you can grab them when you want them. This part of the supply chain is inside another person. So that incident in particular really highlighted for me this very unique role of living organ donors. They really aren't like anything else. I'll tell you the happy ending. You've already seen the picture of me and Deb after surgery. 10 days later, I did go back to the clinic. We did have a very successful surgery. I recovered very quickly. Deb recovered in record time. They sent her home sooner than you send home most kidney recipients. To this day, she and I are both extremely healthy. When I went back to the clinic for my six-month follow-up visit, they said my creatinine and kidney function were so high, they would let me donate again if I had a spare kidney.
- 40:03
Martha Gershun
I think I'm sort of a living example of how this process is safe, but it's just really annoying. And I think we could do a great deal to smooth that out. John has some ideas about that, most of which I endorse.
- 40:23
Dr. John Lantos
Yeah, so we end up in the book talking about three different kinds of barriers based on
- 40:31
Dr. John Lantos
Mark the story. Each of the three is not an absolute barrier, and each of the three is modifiable.
- 40:42
Dr. John Lantos
And each set of modifications has some ethical and policy issues embedded in it. So the first are medical. Transplant centers are pretty committed to the idea, and this is ethically admirable in my view, that no donor should ever die. John McNeill, owners must be screened medically so that they are. John McNeill, documented to be healthy as horses and. John McNeill, Clearly capable of undergoing this rather major operation, but what if somebody wanted to donate and they didn't quite meet those medical criteria, where does autonomy come in and somebody say. Okay, so my blood pressure is a little high. Okay, so my glucose tolerance test is not perfect. That's okay. Even if I should need insulin in the future, I still want to donate to save my loved one, to save my friend, to save my coworker, to save someone I read about in the Jewish Chronicle. Who gets to make that decision about the medical threshold of risk that donors are permitted to undergo or undertake in pursuit of a goal that they find to be deeply valuable. Right now, that's the call of the transplant center and of the surgeon. They have their criteria. Martha didn't tell this part of the story today, but it's in the book. They had found a few little medical problems and said, you know, if we can't get these fixed, you're rejected. We won't let you donate. Second, we did talk about today these psychosocial things. Should somebody really be barred because of X, Y, or Z in their past, whether it's smoking pot or whether it's seeing a therapist or whether it's
- 42:33
Dr. John Lantos
not passing the financial screen or whatever other criteria they set up for saying that you need to meet these criteria in order to be a donor. And finally, there are the financial burdens, which medical insurance, the recipient's insurance covers the medical costs of the treatment. But it doesn't cover lost work. It doesn't cover travel. It doesn't cover the time for recovery for people who have children. It doesn't cover child care, except with these exceptions of people who are very poor. It seems that if we really want to increase the supply of organ donors and we're willing to do all these pseudo market innovations to try to do that, a simpler solution would be to at least make donation financially neutral. whatever that would take without a means test. I mean, it seems like people who are doing these donations
- 43:35
Dr. John Lantos
deserve at least not to have it cost them money as well as cost them all the risks. So we summarize all this in the book by saying there are entities within most hospitals today that know perfectly well how to treat donors well. They're the development offices. They're the departments of philanthropy. And they understand that people who give money to a hospital need to be recognized, courted, and treated with respect. But we suggest that that philosophy hasn't trickled down to the transplant centers. And as some of Martha's stories illustrate, donors are treated more like expendable parts of the supply chain than people who are contributing in a significant way to the mission of healthcare institutions that is saving lives. So with that, we'd be happy to talk about any of this or any other questions people have. It's been a lot of fun.
- 44:46
Event host
Thank you so much for the talk. and for sharing this experience. As we're going into Q&A, we have kind of like a procedure. I'm going to keep track of who's in line, and so we'll have Sandra first on this list. Use the reaction button that Zoom has with Ray's hand, or you could mention in the chat that you'd like to. You can message me directly or... You're on your quarter and wait. Yeah.
- 45:20
Event host
and uh i'll add you to the queue uh so first we've got uh sandra flash and then we'll go to james iphone uh and uh i'll keep track in the the chat for those who are next uh
- 45:35
Audience member 1
yeah thank you so much for a wonderful presentation i'm curious i know you're focused on um kidney donation um i'm wondering if you have any knowledge of whether um the kidney train or the sharing, if you're a donor and you don't match and they are able to sometimes get a chain going, does that happen for other organs like liver?
- 46:08
Dr. John Lantos
So livers are interestingly much easier to match than kidneys. So it could happen, although it's probably not necessary
- 46:21
Harvey Berman
quite as often.
- 46:24
Dr. John Lantos
But there have been chains that involved different organs going to different people. So one person needs a kidney and another person needs a liver. And they've done that sort of
- 46:39
Dr. John Lantos
paired, and I believe, chain donations as well. no medical reason not to do it that way. Living liver donation is a little riskier than living kidney donation, but is accepted with the same sort of rigorous medical screening in a lot of transplant centers today. There's also living lung donation and
- 47:09
Dr. John Lantos
intestinal as well. So yeah, those have been done.
- 47:13
Audience member 1
My husband is on the liver transplant list at one transplant center and is pursuing listing it to others. And no one so far has mentioned this as a possibility. So we'll be asking these questions, but in researching, organ donation in general, it seems very prevalent with regard to kidney, but not so much for the other organs. So I appreciate the information and we'll keep asking questions because we have a lot of potential donors, but not blood type matches.
- 47:48
Martha Gershun
So I can add a little bit to that just based on on the time I spent at Mayo, because not surprisingly, the surgeons who do abdominal transplant surgery. often do both livers and kidneys. The surgeon who actually did my second scheduled kidney surgery is really a liver transplant expert. I guess once you're messing around in the abdomen, you're in the general vicinity and you can kind of keep going. And we talked to him some about that. At the time, and this policy has changed, but when I was there in 2017, Mayo would not accept
- 48:29
Martha Gershun
living liver donors who are not family members because it is a more serious operation and it's more dangerous. And so they wouldn't let strangers donate. Since then, they've modified that policy, which tells me that the surgery is improving and that the odds are improving. But he also shared, and I'm sure you know this, the information that one-way livers are quite different from kidneys is that cadaveric liver donations are better than living kidney donations. With kidneys, the reverse is true. And the reason is because a liver, a living liver donation is only a partial liver, right? They cut it in half and half stays with the original person and the other half goes to the recipient. And so oddly, you're better off with a whole dead liver than a half living liver. This is not true with kidneys, right? Because we don't slice the organ in half. The other thing, and John and I both have done some research on this, the institution that's most aggressive about living liver donations is Pittsburgh Medical Center, where John has a connection, an important institution in his career. And they are actually running TV commercials to encourage people to sign up to be living liver donors. The only other thing I'm going to throw out to this conversation is something i learned in the transplant world you have to be your own advocate and i'm sure you've learned that too um you have to be the one to research you have to be the one to read the studies you have to be the one to go find a new center find a new doctor um again it it brings up the disparity of people with privilege and people without resources but if you have resources and your loved one needs an organ man go for it thank you so much you'll find somebody thank you
- 50:20
Event host
Next to the queue, we've got James, his iPhone at least. And then after that, we'll have Harvey.
- 50:27
Jim Delaney
Hi, Jim DeLane. I'm usually not on my iPhone. So the mysterious James' iPhone is just me. Thanks so much. So first, I apologize. I had to jump on the call a little bit late. But thanks for a really interesting, kind of inspiring story. So I had a question. John, when you were talking about sort of the ethical concerns associated with selling kidneys, and then kind of comparing that to the pairing system. I guess in my mind, I wonder, because couldn't you make the same argument that a lot of the concerns about I might not fully disclose, if I'm getting money, I might not fully disclose that I've got to use certain drugs or that I'm seeing a therapist or all these other sorts of things because I've got this financial incentive. And I guess I could see that if I'm donating a kidney to a loved one, because if I have these risk factors, I might worry that my kidney might be, but it seems like I might be just as inclined to do that for a pairing system, because I'm doing this so that my loved one is going to get somebody else's. So I really, I
- 51:28
Jim Delaney
think whatever concerns you might have about that with financial incentives would be just as, and perhaps if I'm saving my loved one might be even more important to me than whatever money I get. So you could argue it would be even more of a concern. with the pairing system which we allow. So I'm just kind of curious about your thoughts on those parallels, if you think they're parallels.
- 51:51
Dr. John Lantos
That's a great point. And sort of, if I understand what you're saying correctly, it sort of reinforces my point that these are in fact markets and ought to be treated as markets. And therefore, might be a proof of concept that markets could work if sufficiently regulated. I mean, much of the debate about markets has turned on this
- 52:20
Dr. John Lantos
quirky fact that some countries do have legal markets. Iran is the most famous. And those markets are not well regulated. And in fact, outcomes are much, much worse, both for donors and for recipients. And so that gets published. And then people say, this is what's going to happen if you have a market. It may be. And the question of how well you could regulate the market, I think, comes up. And
- 52:51
Dr. John Lantos
as you point out, those temptations to be less than transparent in your disclosures might increase as uh the cost to you of lying goes down um that would be true i guess as i think about it though even with well with a stranger donor to like martha's to deb and she'd be and it depends what you think actually motivates people to do this
- 53:24
Jim Delaney
yeah i guess i was thinking presumably if my motivation is to save my loved one
- 53:28
Dr. John Lantos
yeah
- 53:29
Jim Delaney
then My kidney not being the most ideal isn't really going to affect my loved one, which is really my main motivation. It's just the same as financial interest. Thanks. Thanks again for the talk. It's wonderful.
- 53:46
Event host
Harvey, and then after that, Steve.
- 53:50
Harvey Berman
Thank you. I'm Harvey Berman from the medical school. I want to first say to Martha that the Kansas City Jewish news is a lot more interesting than the local Jewish news here. We never get anything kind of like that. And to Professor Lantos, John, I use your book on pediatric ethics when I teach medical ethics. So I just want to say I'm really thrilled that you're giving this presentation. I'm taking up precious time right now. So I'd like to follow up on Jim Delaney's question. And that is that I don't know how would you regulate a market so that it isn't just poor people selling their kidneys, whereas no Rockefeller or Kennedy or anyone who's very wealthy is going. is going to sell their kidney. What would you, can you see a problem in that or do you have a solution to, a possible solution to
- 54:59
Martha Gershun
that? So Alvin Roth talks about that. John, do you want to kind of follow up with, he talks about managing, that there's no good way to manage on the demand, on the supply side, right? Rich people don't need to sell their kidneys. Now they might do what I did, which is choose to give away their kidney for alcoholistic reasons. Well, one of the things we didn't talk about today, but it's in the book today, kidney donation is not financially neutral. It cost me $4,000. And what did we decide? 28 days of work time from unpaid work time for me and my husband to do this. So compensation to just make it financially neutral would already be something. But. We may never make it so that rich people want to sell their kidneys, but there are lots of ways to make it so that poor people can buy kidneys. And the way to do that is to have the government purchase them and allocate them. It doesn't have to be a free eBay style market where John can bid up the price of my kidney as high as he wants to save his loved one. What if the government bought all kidneys at a set price, let's say $30,000?
- 56:10
Martha Gershun
What if they brought them dead or alive? So we also paid for funeral expenses for poor families who donated deceased organs. And then the government allocates them the same way that they allocate cadaver kidneys today. That's a way to think about it. John, some other ways?
- 56:29
Dr. John Lantos
You highlight the two aspects of justice. Who's going to sign up to get paid to? a kidney and where do the kidneys go that the where the kidneys go problem i think is easier to solve i mean in a sense we've solved it for cadaveric donors through the unos system which i think works pretty well from a justice perspective that is i don't think uh it's all mickey mantel and steve jobs although they they did somehow manage to get livers very quickly when they needed them. But on the supply side, it's tricky. I mean, I think an economist would say everybody's going to make their own calculation. And if $10,000 is worth more to you than the burden and the risk of kidney donation, you might do that. But that would be no different than any other risky pursuit.
- 57:39
Dr. John Lantos
And in
- 57:43
Dr. John Lantos
a society that is not just in so many areas, perfect justice probably wouldn't be achievable, but sufficient justice might be good enough. What Al Roth proposes, and a lot of other people who do this, is let's do a pilot project. Don't by fiat legalize this, but try a three-year study. see if the people who turn up for financial incentives look different either medically or psychosocially, see if their long-term medical and psychosocial outcomes are similar, see if they regret the choices that they've made, and get some data on how a well-regulated market would work, and then use that as the basis for future public policy planning.
- 58:32
Harvey Berman
So can I follow up? I like what Martha's, I hope you don't mind me calling you Martha, goes on, you know, miscarriage.
- 58:41
Martha Gershun
It's lovely.
- 58:44
Harvey Berman
So the idea really would be to help the the recipe a poor recipient get a kidney, rather than help the donor sell the kidney, maybe make it cost neutral.
- 59:02
Dr. John Lantos
Go ahead. In fact, we know there's lots of disparities existing now where Black patients are much less likely to get it. So would this improve the justice on that side of the equation? How would we weigh that against perhaps some increase in the injustice on the supply side? Tricky questions.
- 59:29
Martha Gershun
Thank you. Another, I think, important sort of consideration. I don't know if the world owes me the right to donate a kidney to save a stranger's life. It was deeply meaningful to me, but I don't know that the world owes me that opportunity to volunteer in that specific way. But what if I were trying to save my kid's life or my husband's life? Then shouldn't it be financially neutral to me? Why can only rich people save a relative's life? The other thing that we talk a lot about in the book, and I don't even know how well it's understood commonly. I didn't know about it until we started to research the book. Dialysis is paid for by Medicare under most circumstances in this country, not private insurance. It is the only condition that Medicare covers no matter how old you are, even for much younger patients. Every kidney transplant saves hundreds of thousands of dollars over the life of that patient dialysis is very expensive it's much more expensive than a kidney transplant so every time somebody like me steps up to donate a kidney i just saved medicare hundreds of thousands of dollars in a different scenario i could have saved deb's private insurance company hundreds of thousands of dollars why did i have to pay four thousand dollars to save medicare hundreds of thousands of dollars and parentheses, make the Mayo Clinic quite a bit of money. So the idea of making organ transplants financially neutral to the donor is just a win-win-win-win. Right now, they're the only people losing, and they're not just losing an organ.
- 1:01:15
Martha Gershun
I can't tell you how many times in this process I thought, well, isn't it lovely that I am able to do this, but why is it required that I am able to do this?
- 1:01:28
Event host
Thank you. Let's go with Steve next. And then after that, we've got John and Lisa.
- 1:01:37
Event host
So
- 1:01:38
Audience member 2
I really enjoyed the talk. Thank you. It was a fantastic talk. So I wonder why the people who are opposed to markets aren't completely beyond the pay on their position. So from what I understand the numbers, I'm using a book called Mine. Roughly 40,000 people a year die from lack of a free market in organs.
- 1:02:01
Audience member 2
Second, as you pointed out, we have very inconsistent selling policies, right? You can sell eggs, sperm, plasma, and hair, but you can't sell kidneys and part of liver. It's hard to see what the operative principle is. Third, people take risks all the time, right? We have people volunteer for the US Marine Corps during combat. People regularly work as loggers and fishermen, even though those are the most deadly professions by far. And as you pointed out, everyone else make a killing off it, right? If you looked at what transplant surgeons make and the administrators for those hospitals, they make a fortune. So it's hard to see what the operative principle is. And given if 40,000 lives a year in the United States is correct, there's real blood on the hands of the people opposed to markets. So I'm wondering why we wouldn't think that those bioethicists and other assorted intellectuals and politicians who oppose free markets in transplants um aren't seriously mistaken and in fact have um uh blood on their hands from their outrageous uh positions so thank you
- 1:03:08
Dr. John Lantos
you're an economist stephen
- 1:03:10
Audience member 2
i am not i am a lawyer and a philosopher
- 1:03:15
Audience member 2
i'm also a fan of freedom unlike the violence as opposed to the uh the markets and organs
- 1:03:21
Dr. John Lantos
just suggest that making a killing is probably the wrong figure of speech for for this particular argument um i i think harvey gave the argument against that i mean it i mean the only argue the only two arguments against it i mean one i gave that uh uh who was the first question um countered well that it's gonna lead to a Stephen Hamilton, decrease in the quality of organs, but the other is concerns about injustice, but lost in those concerns, as you point out, are all the passively accepted injustices that flow from restrictions. Stephen Hamilton, On market forces so. Stephen Hamilton, It isn't interestingly it isn't just bioethicists of the the revulsion. at markets in human organs seems to be fairly deeply rooted and widespread. One distinction between all the things that are, where sales are permissible and those that aren't is they regenerate. So maybe not Oba, but.
- 1:04:36
Martha Gershun
We started with a lot
- 1:04:37
Dr. John Lantos
though. Start with a lot, both sperm, blood, hair.
- 1:04:44
Dr. John Lantos
I'll regenerate. Although I don't think we allow people to sell bone marrow, which also does regenerate. So you're right. It's hard to find the logical thread by which this line is drawn between permissible sales and impermissible sales. Going through this with Martha and writing the book, I have come closer to your position. I was
- 1:05:11
Dr. John Lantos
sort of blindly following many of my colleagues in bioethics with concerns about exploitation and injustice, and have more and more come to the view that the hidden costs are intolerable, both to the donors, but also, as you point out, in the tens of thousands of deaths per year. I think regulation could work at least well enough to make it attestable. hypothesis and the benefits could be enormous.
- 1:05:44
Martha Gershun
Stephen, I've been reading much more about this. When I started this process, I wasn't thinking about people paying for organs. And when I wrote the book, John and I really didn't start thinking about that. But it is the question people always ask. And so we've been doing more research after the book was published. I guess that's how it often happens.
- 1:06:05
Martha Gershun
There's a term, it's called repugnant markets, which I was not familiar with, though I'd live with an economist. And organ selling falls in that category, like sex work, like all kinds of other things that on some level we are viscerally horrified that people might sell. I'm even more of a free market person than John is. And for the life of me, I can't figure out. I used to work with families living in poverty. And I understand what it's like for a single mother of three kids to have to work three jobs to support those kids with no hope of ever sending them to college. And why shouldn't she sell a kidney and get the job done? It is probably easier on her life, on her health and on her children than a lifetime of drudgery. And who are we to paternalistically decide that it's okay for her to work at McDonald's and to go to Taco Bell and then clean rooms in the Marriott but she can't just sell a kidney. So from a patriarchal condescending body autonomy viewpoint, I have come to believe that if she wants to sell sex or she wants to sell a kidney, who are we to say that is not allowed?
- 1:07:25
Martha Gershun
But I do think we have to regulate it. And I don't think we want to turn into some black market where people are sliced open in an alley, their kidney is ripped out, it's sold to the highest bidder, and they get no follow up medical care. I mean, there's obviously some appropriate regulation that's required. But anyway, your passion is admirable, and I agree.
- 1:07:45
Audience member 2
Well, I just wanted to add one thing to it very quickly. And that is, there is someone in your case who paid quite a bit for the transplant. It wasn't $4,000. 28 days from a graduate of the Harvard Business College. Now, if we were to say, OK, your average graduate of the Harvard Business College, what would I have to pay for five weeks of your time? I mean, I know what the Wharton Business School costs and costs a fortune. So yeah, there's an enormous price that's being paid. But I guess my claim is that the people opposing markets, they're not just wrong. Their views are horrendous. and we should really, really be quite scathing in our views of their positions. So, and just one last thing, why regulate it more than you regulate anything else in medicine? I mean, we license doctors and hospitals, done. There's no need for further regulation. I'll stop there, thank you.
- 1:08:42
Event host
Did you guys want to respond to that or should we go to John?
- 1:08:46
Martha Gershun
Rock on. I'm all there. When you decide to write the paper, give us a call and we will help. At least I will, and I think John will. I don't want to speak for you on that, John.
- 1:08:59
Jim Delaney
Steve, this is the first time you've ever been received in the Q&A so enthusiastically. We should mark this down.
- 1:09:05
Event host
We are recording this, so we have proof that this happened. John, Lisa, and then after Garrett.
- 1:09:14
Audience member 3
Yeah, thank you for a very interesting and very sensitive presentation. I guess one thing just, I mean, what's going, one of the problems here, of course, is that there are doctors involved in transplantation teams that don't want to kill people. So I think in terms of the medical regulations and the role that the government has to ensure the integrity of the medical profession in this area is an important concern. I guess I was, but my question really has to do with the financial kinds of issues here and obstacles and barriers, because I'm not sure, you know, if you got rid of the medical, the silly, as Martha had said, kind of some of the silly medical requirements and overcome some of the psychosocial barriers, it seems that the financial barriers are much more significant.
- 1:10:14
Audience member 3
and raise all sorts of questions in terms of justice in the healthcare system. I mean, I don't like the idea that poor people will have to turn to selling a kidney or selling blood or, right, in order to make their ends meet and or to, so I don't, you know, and if the system was very much revised or if we took healthcare and considered that as kind of special, that you don't tread on this area and you make this available to people, then
- 1:10:52
Audience member 3
maybe you wouldn't have to go into the
- 1:10:58
Audience member 3
selling of organs. So I'm not sure. I mean, there is the problem of supply. But I'm wondering whether a better solution to the problem of supply is with I mean, I think we could, in a way, twist the arms of rich people to donate if we said, well, if you're not in the chain of donors when you die, then you don't get an organ. I don't know. Has anyone suggested that? And of course, there are opt-out policies for In Spain, for example, I don't really know the figures in terms of, but I think they've increased supplies. And then there's, of course, mandatory organ donation. So those seem to be other ways to sort of address this supply type of problem. I'm sort of concerned that if we address the medical and psychosocial barriers, but don't address the financial barriers, then essentially what you have, you have a system, you're going to have maybe a greater supply of organs from rich people to rich people, rather than And that maybe exacerbates the inequality in the system. So I see the need and the push for allowing people to sell organs and how that would increase supply. And
- 1:12:28
Audience member 3
Martha's case of the sympathy for someone in that position, I have a lot of sympathy and I can understand, especially not only in this country, but in other countries for them to do it. Who am I to say, you can't sell your kidney to save your son or daughter when you're impoverished. I mean, I would do the same thing. But I'm just wondering whether instead of going that route, which I think is right for exploitation. I mean, I'm quite skeptical about how we could regulate it. especially across international barriers.
- 1:13:17
Martha Gershun
John, you sort of suggest a hierarchy, which is I think where John Lantos and I started, which is what if we start by removing barriers and let's see how many more people we can bring into the system that way. We didn't talk very much about cadaveric organ donations. But I have to tell you, the idea that somebody dies and is buried intact with usable organs that could save somebody else's life makes me crazy. I understand culture. I understand religion. I understand fear. I understand misinformation. But it's quite likely that we could make more moves on the area of cadaver organ donation. I mean, I think you all know that only 3% of people who die die in a way that makes their organs usable.
- 1:14:00
Audience member 1
You
- 1:14:01
Martha Gershun
basically have to die in a hospital or somewhere near EMTs. You have to get hooked up to life support very, very quickly. If you die at home peacefully in your sleep, it's good for you, but your organs aren't usable. If you die of old age, if you die of cancer, you basically have to die in the hospital hooked up to stuff. And in truth, not that many people die that way. Nonetheless, only about 50% of Americans are signed up, 50% of adults are signed up to donate organs. If the other 50% signed up and their families agreed, we would double the number of cadaveric organs available. And if we made it easy, not offensive, not so difficult and financially neutral, which means compensation for time off work
- 1:14:53
Martha Gershun
to donate, we could get a lot closer. Right? I mean, we could get closer without buying and selling organs and then we could see if we want to buy and sell organs. Does that make sense? There's low hanging fruit out there.
- 1:15:04
Audience member 3
Yeah. I'm a little unsure about if you, I mean, it compensated and, and even
- 1:15:14
Audience member 3
increased, you know, went a little bit behind, compensated people for donating organs. How much, you know, maybe it depends on the compensation, but I don't, I guess I'm a little skeptical about, that that would really,
- 1:15:34
Audience member 3
well.
- 1:15:38
Martha Gershun
You don't think that's a reason people drop
- 1:15:39
Audience member 3
out? Well, I was just, I know what I was really thinking about was what John had said earlier about how we treat donors for philanthropists and we honor them and we have a different attitude about what they, which is, yeah, makes sense. But I'm not sure that that, going to be the kind of motivation that would um be in place for or work for people who are um uh are poor i i i'm concerned you know whether that i mean that's the latin baby the last thing they have to do is is is think about donating an organ so and um as a something that yeah so
- 1:16:19
Martha Gershun
i mean most people try and donate to save the life of someone they know and love right
- 1:16:24
Dr. John Lantos
most people pardon
- 1:16:27
Martha Gershun
john
- 1:16:28
Dr. John Lantos
living donors
- 1:16:29
Martha Gershun
yeah most living donors are trying to help somebody that they know
- 1:16:33
Dr. John Lantos
particular people yes are not motivated i mean it doesn't go to somebody they know
- 1:16:45
Martha Gershun
so right so cadaveric donors donations go to the pool right
- 1:16:49
Audience member 3
right um i mean do you think it would increase i mean so i guess your suggestion is that it might double the amount of organs available.
- 1:16:59
Martha Gershun
Well, yeah. I mean, if 50% of the people are signed up to donate and we made it 100%, my simple math from the Harvard Business School says you'd double it. Now, it may be that the 50% who have signed up to donate aren't random, and they're not randomly distributed, and they're people who are going to die in a certain way who are healthy. I don't know that. But let's just assume that it's give or take a random distribution.
- 1:17:24
Martha Gershun
John, you write about there's one country where they have opt out, right? Is it Britain that's now gone to opt out cadaveric donation?
- 1:17:31
Dr. John Lantos
Spain has done it for a long time. They've increased supply a little bit. I mean, supply is never going to meet demand anywhere with any of these innovations. If it did, we'd create new indications. I mean,
- 1:17:51
Dr. John Lantos
so the question isn't, are we going to? everybody off the waiting list it's what are we going to save another 10 000 lives a year
- 1:18:03
Martha Gershun
and in my general sense that there are people on the waiting list today who have friends or relatives who could donate but the financial logistic barriers are more than their lives can accommodate and so they're being asked to try and save the friend of a neighbor or someone in their church at the expense of, say, caring for their children at home or giving up their income at McDonald's, things that were a no-brainer for me but are not possible in their communities. And I would like to take away that inequality. I think that disparity is horrifying.
- 1:18:38
Martha Gershun
We let poor people volunteer to do lots of other things, and we're putting obstacles in place to let them do this thing. And, you know, as Stephen pointed out, there's money in the system to make this work. Sometimes if you want to do something, the problem is somebody has to pay, right? And we don't like that. Well, in this case, the only people paying are already making money off the deal. So it's a win-win. There is nobody who doesn't want to get kidney patients off dialysis except the dialysis centers.
- 1:19:14
Event host
All right. It looks like we only have time for one more question. Garrett?
- 1:19:20
Audience member (Garrett; surname unresolved)
Hi, guys. Real quick, John, Maria Christina Murano asked me to say hello to you.
- 1:19:28
Audience member (Garrett; surname unresolved)
I was at her wedding and caught COVID on the way home. This is what happens when friends of yours are ethicists, right? I have two questions. Martha, how important was it that this lady, this recipient, was same race, same gender, same religion, that you knew her or that you quickly knew her. If the Mayo Clinic calls you a week before and says, hey, you know what? This match isn't the right match after all, but there's this fella in Alaska you don't know anything about who could use your kidney. How does that play out? And John, my question for you, if I can, the whole ProQuo system of we'll give you, we'll move you up the list if you bring us a kidney, that is a market, isn't it?
- 1:20:23
Audience member (Garrett; surname unresolved)
Where are we on that? How does the ethics play out for that? I tell you, Mr. X, you are eight or 10% likely to live long enough to receive a kidney on the ordinary list. But if your wife donates a kidney, then you'll have one next month as soon as we find a recipient for hers.
- 1:20:47
Dr. John Lantos
Now, you get an A in the course. So I'll answer quickly, then Martha will do the other one. So basically, what we have now, particularly with the paired and chain donations and vouchers, is an extremely tightly regulated market. So the question isn't, is it a market? It is. The question is, have we found the appropriate level of regulation or with somewhat looser restrictions allowing cash payments rather than in-kind payments be a more efficient market
- 1:21:23
Martha Gershun
and i will take a stab at your question which i think is the 64 million dollar question because um we will never know um i was pretty motivated to do this um it started to feel like a mission and i'm actually somebody who once i set my mind on something i'm going to do it no matter what so i am confident if mayo had called and said sorry dibs out of the picture but we got this you know 35 year old muslim guy with no children i mean somebody quite unlike me i'd have kept going i mean i i was running a marathon and you weren't going to stop me you know short of 26 miles but i do not know if i had read the story initially of someone so different from me if i would have been compelled to begin the process I just don't know. And to be fair, I read the Kansas City Jewish Chronicle because I'm Jewish. I do not read the Catholic Register or the Muslim Daily News or the hip hop millennial email chain. I read the media that speaks to my demographic. So the odds of my learning about somebody in my own demographic were much, much higher. But I work with people of all races, all age groups, many religions, many different cultures. I would like to think of one of my colleagues in my previous work life had had a relative who needed a kidney. I would have been as inspired. It's just that the odds of learning about someone who is different from you are much greater. Does that make sense?
- 1:23:05
Audience member (Garrett; surname unresolved)
Yes, it does. And I think there is a legitimate moral reasons for backing up your way of doing it. The print pro quoting, two friends of mine went through it about eight, nine months ago. You know, that literally the conversation was, you're more likely, you most likely are going to die before we have a kidney for you unless you bring us one.
- 1:23:33
Audience member (Garrett; surname unresolved)
I forgot the point I was going to make. Oh, well, it happens.
- 1:23:41
Audience member (Garrett; surname unresolved)
Sorry.
- 1:23:45
Dr. John Lantos
Thanks, everybody. This was
- 1:23:47
Audience member (Garrett; surname unresolved)
great. I'm sorry. It just came back to me. It seems to me that the most reprehensible aspect of establishing the quid pro quo market is that I would far prefer to die knowing that I'd lost out in a lottery for a kidney than dying knowing that there was no one who loved me enough to donate.
- 1:24:19
Martha Gershun
Well, that brought tears to my eyes. Oh my gosh. It's an interesting question, right?
- 1:24:28
Martha Gershun
Donating is hard. It's not as hard on your body as I thought it would be. It's just hard on your life. And so we're asking people to go through a great deal of inconvenience and expense. And I think if we could lower those barriers, then more people who loved someone could step up.
- 1:24:55
Event host
Well, that sounds like a great way to end this talk thank you uh let's thank our speakers clapping uh reactions and i mean your camera um thank you so much for giving this presentation and and for uh fielding all these questions this was great
- 1:25:13
Dr. John Lantos
thank you thanks for having us this was great discussion
- 1:25:18
Martha Gershun
thank you very much
- 1:25:20
Harvey Berman
you're not selling the book we can't buy the book now
- 1:25:24
Dr. John Lantos
if only we're not doing virtual tours we'd have signed You
- 1:25:30
Martha Gershun
can find the book literally at any outlet you can find. There's even an audio book if you want to hear somebody impersonating John and me.
- 1:25:38
Harvey Berman
I'd like the original. Thank you very much. Thanks. Thank you.
- 1:25:45
Audience member (Garrett; surname unresolved)
Great job, y'all. Thanks.