Kidney to Share: A Living Donor's Experience and Lessons Learned

Patrick T. Smith

Good afternoon. My name is Patrick T. Smith. I am the Director of the Bioethics Program at the Trent Center for Bioethics, Humanities, and History of Medicine. On behalf of the Director of the Trent Center, Dr. Jeff Baker, and Dr. Sneha Mantri, who is the Director of the Program in Medical Humanities, and all of those affiliated with the Trent Center, I want to welcome you to our Humanities in Medicine series. The presentation today is titled, Kidney to Share. a living kidney donor's experience and lessons learned. In 2018, Martha Gershon donated a kidney at the Mayo Clinic to a woman she read about in the newspaper. In this talk, Ms. Gershon will discuss her decision to donate a kidney to a stranger and the long, complicated process that finally led to a successful surgery nine months later. Dr. John Lantos, physician and bioethicist, will use her story to illustrate the ethical issues that arise in recovering and allocating organs from both living and deceased donors. They will suggest ways that the medical community could thoughtfully and safely reduce the burdens of living donors. Doing so could shorten the waiting list for transplants and save lives. Martha Gershon is a nonprofit consultant, writer, and community volunteer. Previously, she was an executive director of Jackson County Court Appointed Special Advocates, and the Reach Out and Read National Center. She is the co-author of Kidney to Share along with Dr. John Lantos. John Lantos is a medical doctor and bioethicist as already noted. He holds the Glass-Knapp Family Foundation Chair in Bioethics at Children's Mercy Hospital and University of Missouri Kansas City School of Medicine. He is an associate editor of the American Journal of Bioethics and a prolific author. We will have a few minutes at the end of their session for questions. As questions emerge in your mind during their presentation, please type them into the Q&A box, and we will attempt to get to as many of them in the time available. Martha and John, welcome to our space. Would you please begin?

Dr. John Lantos

Thank you so much, Patrick. It's great to be here and to see some old friends in the audience. Jeff, glad you could make it. Hope you're feeling okay. We're going to talk about this book, and we're going to do it sort of the way we wrote the book. We wrote the book based on discussions that we had after Martha decided to donate. And the chapters in the book go back and forth between our different voices. And that's what we're going to do today. We're going to try to wrap it up in about 35 or 40 minutes. Martha's going to mostly do her story. I'm going to do a little more background and a little more of the bioethics behind it. donation. Most people, let me start with a little background about organ shortages. Most people on this call probably know this, but there's lots of people waiting for kidneys, about 100,000 in the United States, about a dozen die every day on the waiting list. And there just aren't enough kidneys to go around. 2021, there are about 17,000. Most were from deceased donors, two-thirds, about third from living donors. And most of those went to biological relative spouses or life partners, either directly or through paired exchanges. So only about a third of a third, 10% were unrelated, directed like Martha's. People on the list are desperate and take out ads on billboards, trying to get a kidney. They write articles in popular magazines like Good Housekeeping. There are foundations that teach people how to crowdsource, but in spite of all these efforts, most people who need a kidney donated cannot find a donor and spend three to five years on dialysis with all the complications and all the expenses. So anything that would increase the supply of

Dr. John Lantos

kidneys, increase the number of people who donate, would improve outcomes. Furthermore, we know that outcomes are better with living donors than they are with cadaveric donors. It's easier to get a good match because you just turn away ones who are not good matches. Kidneys spend less time out of body. The whole thing is well-coordinated. You don't have to sort of swing into action once somebody is declared dead. You can plan the whole thing and it goes much smoother. So scheduling is also important for maximizing outcomes. People have studied the benefits to living donors, and this is from the American Academy of Pediatrics looking at children, but these same things hold true for adults. Children are much more complicated, of course, ethically speaking, because

Dr. John Lantos

they can only assent, not consent if they're teenagers, but people have talked about these psychological benefits as counterbalancing the risks of being a donor. You get an enhanced relationship With the recipient, this greater self-esteem, you can get adored and admired by the community as a hero. And if you're donating within a family, you relieve the family of the burden of caring for a seriously ill family member. So these have all been used to justify the rare cases where a child donates. It used to be much more common in the days before we... perfected histocompatibility matching and immunosuppression. One of the things we found

Martha Gershun

in

Dr. John Lantos

researching this book and that Martha experienced when she wanted to donate is, even though everybody knows we need more donors, living donor, living donation, donations from living donors do better than cadaveric donors, transplant centers have not been warmly welcoming. of living donors, they've gotten much better. But if you look at the history of transplantation, especially for non-family members, there is a long history of suspicion about the motives of living donors. And this gets to both coercion, but also psychopathology. For a long time, people thought anybody who would step forward and want to donate a kidney to a stranger had to be crazy. And the first response was to refer them to a psychiatrist. This sort of suspicion was so rampant in the UK that in 1990 they passed a law banning donation to anybody except a genetic relative. It was a response to underground organ selling and trafficking in organs, but it looked at donations to non-relatives as similar. They just said anybody who would do this must be getting paid under the table. So we're not going to take the trouble to investigate. We're going to lump the two of them together. And people like Martha who say, I want to donate to somebody I read about in the paper would go to jail. They'll pay a fine. It was outlawed. This was challenged by a nurse who wanted to donate to a stranger. And eventually the law was overturned in 2005. So that's no longer in effect in the UK, but it suggests what the history is like. Or this paper. from Canada, Canada International Health System wanted to know whether to cover donations from living anonymous kidney donors, people who wanted to donate to somebody they didn't know. And so they went around and started interviewing these people with the question, are they lunatics or are they saints?

Dr. John Lantos

The article has this somewhat funny sentence. Contrary to our fears, there are actually a number of people who seem to be psychologically stable and altruistically motivated. That is, they're not crazy, don't appear to be crazy. Maybe we should cover this. And they started doing that. And Living Anonymous kidney donation is now encouraged in Canada as it is in the United States. Transplant surgeons were the locus of much of this ambivalence. Renee Fox and Judith Swayze are well-known medical sociologists who have done a lot of work studying everything about transplantation from the earliest days in Boston when kidney transplants were usually miserable failures. But what they found was surgeons are very reluctant to operate on living donors, or at least they were, because it seemed to violate a central tenet of medical ethics, do no harm unless Somebody's sick. And in this case, you're operating on a perfectly healthy individual. And surgeons said, OK, if their parents, siblings, that's a healthy, an act of healthy altruism derived from general moral concern with these stranger donors.

Dr. John Lantos

You know, let's get the psychiatrists in.

Dr. John Lantos

This has changed, but the result. There's a remnant of it in the fact that when someone like Martha, and she's going to talk about this, steps forward to donate, they're welcomed, but they're still required to undergo a rigorous psychological evaluation designed to assess their motivations, ascertain coercion, gauge the likelihood of post-donation psychological problems. And questions arise about whether this psychological evaluation, A, is necessary, and B, is actually effective at screening out people whose motivations are suspect. Do psychiatrists have any special insight into that? Well, Martha's going to tell you about what happened when she went through this evaluation process.

Martha Gershun

Thanks, John. I first read about Deb Porter Gill in December of 2017. I was reading the Kansas City Jewish Chronicle, local newspaper in our community. I've been reading it for 30 years. And there was a story about a 56-year-old woman. She went to the same synagogue that I went to. I'd never met her there, but she'd been in the same building. She had two kids younger than my kids, but again, had gone to the same religious schools that my children had gone to. She had been an attorney in the sex crimes division, working with children in our county. And I had been working with foster children in that same community. So very similar kinds of work. and she needed a kidney. Deb had been diagnosed with both kidney disease and diabetes when she was in law school and in her early 30s. She had received a cadaveric kidney pancreas transplant 18 years before, a donation from a 60, younger 50-year-old woman who had died in a car accident. And Deb always says, wear your seatbelt if you don't want to be an early organ donor. Those transplants had worked. The pancreas were still going strong, but after 18 years, that kidney was failing. And those of you in the medical community know that's a long time for a cadaveric kidney to last. Deb was obviously medication compliant and otherwise healthy, and the kidney had done well. But now she needed a new one. The doctors did not think she would live long enough to make it to a cadaveric. on the transplant list, and she was reaching out to look for a living kidney donor.

Martha Gershun

This story really resonated with me. I just told you the ways it seemed to me Deb and I were alike or had lived in the same community, should have been friends, had we known each other. I had recently retired from my career first in the corporate world and then in the nonprofit world, so I had time on my hands for a big project. Our kids were grown out of the house, didn't need us anymore. Sadly, our parents were gone and our elder care responsibilities were over. So this seemed to be something I wanted to do and something I could do. As with many altruistic living kidney donors, transplantation wasn't a new idea for me. In 2002, my very favorite cousin, Ann, in Omaha, needed a kidney transplant. Anne had polycystic kidney disease, the most common genetic disease in our country, and had to have both of her kidneys removed. And she needed a transplant pronto. She was on dialysis, but she needed help. At that time, I learned a little bit about living kidney donation. I was not a blood match for Anne. She's not a biological relative. She's married to a cousin. My own life was busy and full. I didn't pursue it very aggressively. But Anne's best friend, Cheryl in Omaha was a perfect match. And after some hiccups and some complications, that was a very successful operation. And Anne lived another nine years. So I was someone who belonged to a family who had seen the benefit and the miracle of living kidney donation. Because Cheryl donated to Anne, Anne was able to go to her kids' weddings. She was able to see the birth of her grandchildren. She was able to come to my kids' bar and botanist vote. she was able to come to my mother's memorial service. We had time with a beloved relative because of a living donor. So this was very much on my mind while I was reading the story about Deb. Talked to my husband, made a phone call. Deb was registered at the Mayo Clinic. And one of the things that I very quickly learned is that as a donor, you don't pick the hospital and you don't necessarily get to pick somewhere close to your home. You go to the hospital. where your recipient is registered. We don't fly living kidneys around in quite the same way we fly cadaveric kidneys around. We fly donors around, or in my case, we drive donors around.

Martha Gershun

This experience was the most meaningful and the most extraordinary and the most miraculous of my life. And I would do it again if I could. The other kidney, I think, has to stay inside of me. But it was remarkable. It was also frustrating and annoying and expensive and sometimes downright stupid. My own career has been in service operations, first in the for-profit world and then in the nonprofit world. I have an MBA from the Harvard Business School in marketing and customer experience. I have pretty strong opinions about how we should... treat people as part of supply chains, as part of customer links. And a lot of those rules that we know obviously from business are violated significantly in our relationships to living kidney donors. They are complicated people because they are patients in the medical system, but they are also parts of the supply chain, like a bag of blood, like a metal plate that sits on a shelf. And we have not yet figured out the nuanced approach that will work best for people who are both supply chain components and patients. So that's why I partnered with John to write this book. I felt like I was possibly uniquely positioned to have a say in this, having experienced it myself, having a lot of first-person stories. But also having studied this academically and practiced it in my career for over 30 years, I had a pretty good sense of what we might be doing wrong. I'm going to give you two quick vignettes, many more in the book. When I filled out the online form to become a living kidney donor, even before they test your blood, that's expensive and they want to rule out a lot of things before they even invest in that way. I told the truth and I said yes to the question. Have you ever, ever is a big word, ever used recreational drugs. The fact is, from time to time, I've had marijuana in Colorado where it's legal on vacation. Yes, every once in a while, some recreational drugs. Big red flag. The social workers from the clinic wanted to extract a promise from me that if they tested my blood and if it was a match, I would consent to participating in substance abuse counseling. I said, sure. I was trying to save Deb's life. I didn't want to be annoying, but it turned out when my blood was a match and we scheduled my three-day medical and psychological evaluation at the clinic, I had 25 appointments, kidney appointments, heart appointments, lug appointments, appointments with the surgeon, appointments with the financial counselor, appointments with the social worker, appointments with the donor advocate. They did not have room on their schedule for an appointment with a substance abuse counselor, so I could check that box. And they demanded that I come back a second time. This was not a trivial request. I live six hours away from Rochester, Minnesota. It requires a drive. It requires an overnight stay. It was going to require more time off work for my husband to accompany me. I wasn't working for money at the time. I was already retired, but Don was still working full time. all because they didn't have room on their calendar for the one appointment that I was pretty sure I didn't need, but they were insisting on. This is no way to treat an important customer who is enabling surgery for another person and enabling the clinic to do their work. I was pretty vocal about my distress about this. said I didn't think it made sense, said I didn't think I needed to see a substance abuse counselor, said it wasn't convenient, said it was no way to treat a donor. And they heard me and they in fact did cancel the appointment. They decided that I was not impaired because of drugs and would not have a bad outcome because of drugs. But you have to wonder, is that because I am educated, because I am articulate, because I speak English without an accent, because I am over 60, because I am white. Is that an accommodation they might not have granted? A 27-year-old black guy with dreads and imperfect grammar who's trying to save the life of his mother. We talk all the time about the inequities, the racial inequities in living kidney donation. In kidney care, it's a disease that disproportionately impacts black and brown people. but they are disproportionately disadvantaged in getting living transplants. Probably because the very friends and family who would more likely match with them are put off by these kinds of requirements. The one other one, you see the box there? That's the box they sent me asking me to send my very last blood sample up on dry ice 30 days before the procedure. That's a federal regulation. All donors have to be screened for HIV, AIDS, and hepatitis. We do not want to transplant infected organs into someone who is then going to be on immunosuppressant drugs for the rest of their life. And that one came with the instructions, please ship back to us on dry ice.

Martha Gershun

I don't know about the rest of you, but I am not a shipping and receiving expert. And I didn't know how to do that. So I called the lab. They didn't know how to do it. I called my doctor. He didn't know how to do it. I called my living donor coordinator at the clinic. She said, Google it. I don't know. So I did. I actually found someone who would sell me dry ice, transport dry ice. I found someone at FedEx who would tell me how to pack it safely. Turns out dry ice is something that if you seal the box too tightly, it will blow up and crash the airplane. This is not a good thing. And I got it done. But it took hours and hours. And again, all of my education, all of my training, all of my resources, a car that worked, gasoline in that car, the ability to spend all day chasing it, not having to miss paid work. How would someone who was low on resources get that done? And why can't a clinic that demands that people send blood up on dry ice have a national relationship with a shipper who will take it? These are things that in a business context, we know how to solve those problems. But instead in this transplant world, we push those problems onto the donor, the one person in this arrangement who really is acting altruistically and for no personal benefit. John, I'll tell you a little bit more about how we're thinking about this.

Dr. John Lantos

So, am I unmuted? Yeah. Let me just get my camera on too.

Dr. John Lantos

So we spend a lot of time in the book talking about three different ways to increase the supply of organs, opt-out versus opt-in for cadaveric donors. We spend a lot of time talking about markets and have had interesting discussions as we've gone around the country talking about that. And where we end up with, though, is much more based on Martha's experience talking about more support for living donors. So let me just quickly go through these. We'll get to the end of Martha's story and time for discussion. Opt out versus opt in. Some countries have done that. Spain and Croatia have sort of led the world in this and they have the highest rate of cadaveric organ donation as shown on this slide over here. Spain and Croatia are the two bars on the left. Raises the question of whether the cultures in those societies allowed presumed consent or not. opt-out versus opt-in or whether the opt-out actually led to the increased rate of donation. But in any case, it's a possibility for increasing the supply. Instead of saying, I want to be a donor, you have to say, I don't want to be a donor.

Dr. John Lantos

It's a form of nudging. The Nuffield Council on Bioethics has analyzed the strength of different kinds of nudging and wrote an interesting paper in 2017, looking at this ladder of nudging from do nothing and monitor the current situation to eliminate or regulate, eliminate choice entirely and mandate certain actions. This sort of thing has, of course, come up in the context of COVID and vaccines. The dark line is about where we are now. We guide choice through the default and opt out versus opt in with fit under this. We don't use financial or other incentives, at least for organ donation, but we could. So there are possibilities for increasing the supply of cadaveric donors. Markets have gotten a lot of attention and debates about markets have become this sort of

Dr. John Lantos

fixed positions on both sides. Pro-market advocates believe that it's unethical not to allow markets for reasons I'll briefly go through. Market opponents think the moral arguments against them are equally obvious. And not much has changed except on the margins. So if you look at markets for body parts, there's lots of body parts that can be legally sold. Eggs, sperm, breast milk, bone marrow, blood, and plasma. You can legally rent your womb in surrogate pregnancy arrangements. So it raises the question, why are some body parts sold? To be sold, most of these are regenerative kidneys or not, but

Dr. John Lantos

is it my body, my property? Another argument in favor of markets is just consistency in the way we think about risks that people are allowed to take and whether they should be able to make choices themselves. So respect for autonomy, especially to save lives, and consistency. People are paid to work in logging or be aircraft pilots. work in oil, gas, and mining. This article appeared in 2018 in a journal about law and regulation. If we pay football players, why not pay kidney donors? Why are they allowed to take the immense risks of being a football player and get paid for it, but we don't allow people to sell their kidneys? Arguments against markets are probably equally familiar. The main concerns are coercion, and exploitation and the fear is it will lead to poor people becoming organ farms, rich people exploitation, and even some concern that desperate people who wanted to sell their kidney might lie about medical problems like drug abuse or psychological problem. So it decreased the efficacy of organ transplantation. As I say, very few countries have legalized markets, but what's happened has been sort of nibbling away at the margins. So market-like transactions are permitted, even though unfettered markets are not. And one of the most common and most successful is this idea of paired exchanges. It was invented by an economist. He won the Nobel Prize, Al Roth. And he said, you know, if you want to give to your loved one and you can't, and somebody else wants to give to their loved one and they can't, do a barter swap. You give to their loved one, they give to your loved one, everybody's better off, it's pareto optimal. It's an economic exchange. He said it's a market, but for some reason, non-economists don't recognize that and therefore permit it. They actually changed the law in the United States when this was developed to say, oh, yeah, this is, We ban markets, but these kinds of things are fine. And once you do a paired exchange, you can do chain exchanges. The longest one on the record is now a 30 person, 60 person, 30 kidney paired exchange that works like this graph over here shows,

Dr. John Lantos

and then loops back at the end. So donor N, in this case, donor 30, gave to donor N. the last recipient, and then it came back to the first person's recipient. Are these markets? It's in the eye of the beholder. They certainly are market-like. And they get even more market-like if you can't close the loop. What if the last person on the chain is not compatible, but the first person still wants to donate? Well, let's give them a voucher. And so for the next chain, they can get a kidney. And, or you could give them a voucher that they could give to a loved one. Is a voucher like money? Sort of. Is it like jumping the queue? Sort of. Is it a market? I think so, but it's not thought to be, or at least not banned in that same way. So nibbling at the edges, maybe if we give people more incentives, they'd be willing to donate.

Patrick T. Smith

With

Dr. John Lantos

regard to living donors, another way to think about market-like incentives Incentives would be to provide more support for living donors. For example, reimbursement for lost wages or for travel expenses or for other out-of-pocket costs. People have proposed giving living donors health insurance or life insurance. What if the living donor has a medical complication? The complications or the cost of the surgery to... procure the kidney are covered by the recipient's insurance, but what if there are other problems down the road? Or people have suggested non-monetary awards. Sally Sattel said you should get scholarships to go to college that you can give to your children or other things like that. So these would all be potential ways to increase the supply of organs. And after Martha tells the end of her story, we'll come back to this idea of more support for living donors.

Martha Gershun

Well, this of course is the picture that shows our happy ending. There were some hiccups along the way. I first went back to the clinic for a surgery on September 18th of 2018, passed the renewed one-day medical with flying colors, went back to the hotel room to... drink the bottle of laxative, scrub with the antiseptic soap, get ready for a 5.30 a.m. hospital call for the surgery. And the phone rang at 9 p.m. It was the nephrology fellow at the clinic. Deb had checked into the hospital the night before and she was sick. She was very sick and they were calling the surgery off. This absolutely was the low point in the process. He couldn't tell me very much, HIPAA. precludes him from disclosing much about Deb's condition. I asked if I could talk to Deb. He said, she's crying. I don't think she can talk to you. And that was really scary to me. I said, what am I supposed to do? And he said, I don't really know. But I do know that you shouldn't come tomorrow morning for surgery.

Martha Gershun

This was another example of how being both a patient and a part of the supply chain is so complicated. As a part of the supply chain, you get no information, right? You're the metal plate that's going in someone's ankle. They don't have to say to you, sorry, we've postponed the surgery. I didn't know if we were canceling the surgery. I didn't know if Deb was dying. I didn't know what to do. I was six hours from home in a hotel room with my husband having just chugged an entire bottle of laxative. So my husband ever the common sense person said is laxative, we are going nowhere. Let's just stay put. You don't have to rush out of the hotel room. Let's figure things out in the morning. And sure enough, in the morning when I was able to reach my donor advocate, she said,

Martha Gershun

they tell me that your surgery is postponed, not canceled. We hope to do it again in a few days. We'll let you know. And I said, I'm in a hotel. My house is far away. What am I supposed to do? And she said, I think you can go home. We'll call you when it's time to come back. Well, in fact, they did call me and they said, can you check in tomorrow morning? Things are good to go. We're going to run labs. We're going to move forward. And I said, the only way I can get there is by driving through the night. And I don't think that's a good idea. And they were like, what do you mean drive through the night? Aren't you here? I said, I'm not here. I don't live in Rochester, Minnesota. You've been working with me for nine months. It says on my chart, I live in Kansas City. Oh, oh, you're in Kansas City. It was, again, that weird dislocation of not realizing that this kidney, this body part that they needed was in a living human being who actually had a life and a cat and a house and had gone home.

Martha Gershun

In the end, of course, This story has a very happy ending. You can see Deb and me there after surgery. What she can't see is at the foot of her bed, that plastic bag connected to the catheter, connected to Deb, which is filling with golden urine. I got to tell you, it's the happiest I've ever been to see a bag of pee in my entire life. The kidney worked right away. It perfused with blood. It created urine. And now, three and a half years later, Deb and I are both in very good health, doing well. She lives in Florida, and because of COVID, we have not been able to see each other as we had thought perhaps we would. But we do Zoom, we do Facebook, we text now and then. The picture you see on the other side, she came to Kansas City to see her family who live here and took me out for sushi. So that's our picture. We always say we look happy because we just had sushi.

Martha Gershun

What I always want to say, is I would never discourage anyone from doing this. It is the most remarkable experience to think that part of your body has saved another person's life, whether they're family or friend, or in Deb's case, someone I didn't even know before we started the process. It's a miracle. It is also difficult and frustrating and expensive and hard to do. And I think we all owe it to... those people on the kidney transplant waiting list, the 12 people who die every day, to make this easier so that more people can donate and we can save more lives.

Dr. John Lantos

So what do we take away from all this? There's lots of barriers, some of them more ethically justifiable than others, but all pretty interesting and all at least open for discussion. examination. The medical ones are usually thought of as the least controversial, but even with medical, this question of how much risk a donor should be allowed to take is fundamentally an ethical question. Just as an example, people are allowed to donate a part of their liver. That's much higher risk than donating a kidney. And the things that people screen for among kidney donors

Dr. John Lantos

don't get it up to the level of liver donation, but people can be rejected as kidney donors by transplant centers because the transplant center deems that risk too high. Where should the balance be? I mean, I think transplant surgeons do have a right to say, I don't feel comfortable operating on this person, but some self-examination about the criteria they use to set thresholds of risk, I think are essential. We talked a little bit about the psychosocial issues, this psychiatric screening. It's hard to argue with the idea that you want the donor to be mentally fit, to be uncoerced, whether that requires somebody who smokes a joint now and then to talk to a substance abuse counselor is less clear.

Dr. John Lantos

Martha didn't mention it, but they also asked if she'd ever seen a psychiatrist or a counselor, and when she said yes, they asked for all of that person's records. Again, this sort of intrusive and suspicious approach to donor evaluation. Finally, the financial burdens may be the easiest to address, and people have started to look at those, and I'll talk about those a little bit more in a minute, but just to show that these have a real-world effect. They did a study of all the people who started down the road that Martha went down and how many actually ended up donating. It's only about 15%, and people are screened out for both medical reasons and what in this study was called donor opt-out, which was not further specified, but may have been this sort of being put off by... some of these barriers. There was a racial difference too in the number of people who made it through. Twice as many Caucasians who entered the pipeline eventually donated compared to African-Americans. What can we do about the financial barriers? Well, there are some programs.

Dr. John Lantos

CMS runs a National Living Donor Assistance Center. It's means tested based on the recipient's annual household income. But if the recipient is poor enough, then the donor can get reimbursed for lost wages, travel costs, dependent care needs, and other things. This is a good program, although one could ask why it needs to be means tested and why based on the recipient's annual income. If this saves money, and it does, people who get a kidney cost Medicare much less than people who remain on dialysis. Why not just give money to encourage anybody who wants to donate and cover their expenses? There are a few non-profits that have tried to fill the gap, particularly encouraging paired exchanges. The National Kidney Registry offers all of these benefits. They raise their money from private donors, but they reimburse for travel.

Dr. John Lantos

They give insurance and they connect you with another living donor so you can find out more about it. Another not-for-profit, the Kidney Transplant Collaborative funds research to try to

Dr. John Lantos

understand gaps in the current kidney transplant system and decrease obstacles faced by patients, donors, and their families. Some states have started to look into this. New York, there's a bill before the New York State Legislature which would allow the state to fully compensate New Yorkers with the costs associated flipping donation and would offer free health insurance to anyone who donates. We'll see if that passes. Art Kaplan, a famous bioethicist, recently wrote a commentary saying, you should not lose money or risk debt to be a hero. Kidney donors are heroes. We need to... treat them that way. And that's sort of where we end up in the book with this modest proposal, which we call treat donors like donors. That is people who give money to hospitals are honored. There are whole divisions within hospitals, development offices designed to both encourage donation and to recognize and reward people who give money. Nothing like this exists for people who give money. a body part. They're treated like part of the supply chain. And as Martha's experience and stories suggest, are often

Dr. John Lantos

not taken care of and simply expected to do a lot of the work, like figuring out how to ship a blood specimen on dry ice or travel back and forth between Kansas City and Rochester, Minnesota at their own expense. There is one country in the world that has gone farther than most in treating donors like donors. There's an organization in Israel called Mat Nad Chaim, the Gift of Life, which, like the not-for-profits in the United States, is a nonprofit foundation. But what they provide for living donors... is a comprehensive set of benefits. Compensation for up to 40 days of lost work, not means tested, but based on actual lost income. Travel reimbursement if you need to travel to donate with no receipts required. Supplemental private health insurance, disability insurance, life insurance,

Patrick T. Smith

psychological treatments,

Dr. John Lantos

five therapy sessions if the donor needs them. At $140 per session, it has to be within four years of donation. They pay for a recuperative vacation for the donor, seven nights at a hotel, has to be within 90 days of donation, an exemption from paying the national health tax, essentially health insurance, for three years, and my favorite, a lifetime membership in all national parks. If you give, interestingly, back to the discussion about whether there are markets in donors, They specify, as I showed on their website, kidney donors receive no monetary compensation. Well, okay. But there certainly is some reward. I would think of this as a well-regulated market. That is, it's not a Wild West free market where kidneys are sold to the highest bidder. Instead, you're told what you're going to get. most of it can be seen as compensating for expenses or taking care of the donor's physical and mental health.

Patrick T. Smith

So with that,

Dr. John Lantos

we will stop and look forward to your questions. Thanks for having us.

Patrick T. Smith

Great, thank you so much for that very important and engaging and interesting presentation. I just find this whole story so fascinating, along with many of those who are in this space as well. I do want to jump in and just begin with some questions here for both. Well, maybe starting with you, Martha. You mentioned, I think, in your talk, if I remember correctly, that you're doing fine. And John, you mentioned about the relative safety of this type of procedure and so on and so forth. Martha, I guess I would

Dr. John Lantos

just be wondering,

Patrick T. Smith

Did you do any research ahead of time concerning the safety of these type of procedures when you read this newspaper article? Or was this something that just captivated you? You were motivated to do it. You were compelled to do it. Didn't really think a lot about the safety issues. Or did that play into your consideration of making this decision?

Martha Gershun

It's a really good question. And I always tell people there are... at least two decision points in this process. I mean, it's really a continuum. But the first decision point is, I'm going to make a phone call and see if I'm a match. The odds of that for a stranger, for someone to whom you have no biological relationship, are about 100,000. So you're really just offering to play a game of chance. I did that with very little consideration. I talked to my husband and said, I'm going to do this. But I didn't do any research. I figured I wasn't going to match. that's just a shot in the dark. But when they call back and say, you are a perfect match for this individual. Now you got to get serious. And they say, do you want to proceed? If you don't, your recipient has other options, but we won't test anybody else until you say yes or no. Now you get serious. And that's when I did start to do research. I'm lucky my primary care physician happens to also be a nephrologist by training. So I had someone, medical training, someone who knew me quite well to spend some time with. There are good studies. What's most interesting to me is the thing that people are freaked out about. And the thing they immediately jump to is the surgery is going to kill you. Well, for the donor, it's less than two hours with anesthesia. It is a smaller incision than a cesarean section. I had less...

Martha Gershun

adverse consequences than when I had my gallbladder removed. We do abdominal surgery on people all the time and take things out of them. We take babies, we take uteruses, we take ovaries, we take appendicitis, we take gallbladders, we take stuff out of people's abdomens all the time. And by and large, they don't die. And if you know somebody who's about to have a C-section, you don't say, oh my God, you're going to die. However, the long-term potential for end-stage renal disease is greater for kidney donors than other people. We only have one kidney. It has to do double time. Nobody talks about that because why would they know? So your best friends say, you're going to die on the table. No, you are not. At the Mayo Clinic, they told me they have never lost a living kidney donor on the table. But in 20 years, I probably have a small but real statistical chance of end-stage renal disease. Again, it's the increase of a small number. but it's an increase. So people are irrationally scared of the wrong thing.

Patrick T. Smith

Great. Thank you so much for that. One question from the queue here

Patrick T. Smith

raises this idea. It says, Martha and Deborah were both Jewish. And so the question is, in the Orthodox Jewish community in New York City, say, there's an organization that perhaps... connects donors with recipients, right, within the broader Jewish community. So the question is, how important is finding some point of connection like this, something that helps people recognize being part of the same community in this whole conversation of living donors?

Martha Gershun

John, you have a lot of thoughts about that, I

Dr. John Lantos

know. I think it's really important. I mean, I think there are levels of altruism and different people have different levels. I mean, it's just like giving to charity.

Dr. John Lantos

In listening and going through Martha's story with Deborah, I mean, the fact that she read about her in the Kansas City Jewish Chronicle and that their life stories were so similar, I'm sure was instrumental in the decision to donate. raises the question of whether faith communities are, for many people, sort of like extended family. Martha talked about how they have reminded her of her cousin Anne. That's this extended family thing. That could be tapped. I mean, I don't see that as necessarily a bad thing. I mean, the highest level of altruism is people who say, take my kidney. I don't care who it goes to. I just want to help somebody who's suffering. Most of us, I think, don't. rise to that level of altruism. But if we're somewhere in the middle, like Martha was for Deb, and there were ways to make it easier for people who want to donate within

Dr. John Lantos

their extended family or faith community or to a coworker or something like that, I think lowering those barriers would be a good thing.

Martha Gershun

I think that's right. I like to say, gee, I wish I would have worked just as hard to donate to Deb if she had been that 27-year-old Black guy with bad grammar who lived in a part of town I've never visited. And maybe I would have if I had ever met him, but I wouldn't have met him. I read the Kansas City Jewish Chronicle, not Dos Mundos, not the Kansas City Call, our African-American newspaper. We are in the communities we are in. And I think it's probably significant that very few people do what I do, which is donate to someone you've never met before. Even fewer donate completely anonymously to someone they never meet. Most living donors, and it's still not a big pool, donate to family, friends, or relatives, right? So that circle gets

Martha Gershun

tighter and tighter and tighter. I think a lot of the changes, the recommendations that John and I make, are important regardless. And what I like to tell people is if something had happened that kept me from donating to Deb, my blood pressure had been too high and I hadn't been able to get it under control. We had not been able to afford the multiple trips up to the clinic. If something had happened, it'd be really a bummer that I couldn't have saved Deb's life, but it wouldn't have changed my life. What if she had been my daughter, my mother, my son's best friend? then those obstacles become life-changing, not just for the recipient and their family, but for the donor and their family as well. So the recommendations that we bring forward matter across the board.

Patrick T. Smith

Thank you. Dr. Stewart connectedly asked, well, he, first of all, thanks you for your outstanding presentation and for pointing out the limitations of our medical system that you were able to successfully overcome. You rightly point out the racial disparities in our system, and we are trying to address these issues at Duke keynotes. So his question is, how do you think we should approach the community about considering living donation to non-related recipients?

Martha Gershun

Well, for sure we should make it financially neutral. So John didn't give the numbers, but they're in our book. My husband and I spent over $16,000 in out-of-pocket and lost wages to get this done. That's a very privileged position. As it turns out, my recipient's family is also well-resourced and they compensated us for all the out-of-pocket expenses. But my husband missed a lot of day's work and nobody compensated anybody for that. If we started by making it financially neutral, that would be a good place to start. The other place I think it's really important to start is to stop thinking that Black people have to donate to Black people and Latino people have to donate to Latino people. We always think about the ways we're going to save Black people's lives as increasing donation in the Black community. White people match with Black people. It happens all the time. We have to reduce the barriers across the board so we can increase donations.

Dr. John Lantos

And I'd go back to Farr's question and this idea that most people are probably more likely to donate to people like them and say, probably working within the faith communities

Dr. John Lantos

is a way to increase donation. I mean, I don't think it's an accident that Martha found out about this reading the Kansas City Jewish Chronicle. I think to go to faith communities and say, you can save someone in your congregation. Here's how to do it. And then if you have a program that assures them that they'll be carefully screened for health problems, then it'll be financially neutral. Or perhaps even like the Israeli program, somewhat beneficial. I mean, you get lifetime membership to national parks. It's not a market, but maybe

Martha Gershun

you're a little better off as a

Dr. John Lantos

result. I think that's the only way to do it at this point. Let people know. that they can do this and tell them you'll take care of them.

Martha Gershun

I have one more suggestion. Several times when we talk, people have asked if you could only change one thing in the system that would have made it easier for you. And I'm going to take the financial aside because I don't think that's in the realm of the transplant centers to fix. I think that's a bigger upstream problem. But if the transplant center could have done one thing to make it easier for me, the answer is really simple. They should have called me once a week and asked how I was doing. This process took nine months and I counted the longest stretch when I heard from no one was over three months long. You think, has this thing been called off? Have they forgotten about me? Have I been excluded? What's happened? And sure, if you write to them on through the portal, they'll write back some template language. But if I were managing a sales lead bank, which is what this really is, I would call my prospect once a week and check in and see how they're doing.

Patrick T. Smith

Looks like we may have time for one more question here, and I want to be sensitive to the time, and this is always difficult to discern between what's remaining. But I do want to raise a question from an anonymous, well, no, actually, yeah, maybe we can do this real quickly. I'll try to see if I can squeeze this in. So, John, look, you mentioned the possibility of financial incentives, which is not currently used formally. So the question is, Martha, how do you think it would have affected your decision to be told that you would be paid, say, $50,000 for donating a kidney for Deborah? Would that have

Martha Gershun

dissuaded me, like somehow tainted it?

Patrick T. Smith

Yeah, I mean, or just what, yeah, what would be your, how would that have affected your decision in any way whatsoever? Would you have looked at it in a different way than the kind of altruistic way that you had framed it initially?

Martha Gershun

I think that would have been great as it was what I did made hundreds of thousands of dollars for a surgeon who doesn't need the money and one of the largest medical hospitals in our country. What if I'd had that $50,000 to give to my very favorite charity, the place that I spent my career helping low-income children? I'd have taken that money and I'd have done great things with it. My choice, not in the end, making a huge financial contribution to the Mayo Clinic, which is not on my personal charity list.

Patrick T. Smith

Very good. Great. Thank you. And so as we will be cutting off right at one o'clock, and maybe both of you can chime in on this one and give any last words. And then Martha, this is primarily directed towards you though. So Martha, did you ever feel concerned that if you push back during some of these more frustrating situations during evaluation or donation, that it may put you at risk of not being approved to donate? The power dynamics between the donor and transplant center is a tricky part of this process. And though there are measures in place to protect this balance, it can be an unspoken difficulty in this process. This would be heightened for someone who wishes to donate to a family member.

Martha Gershun

That's exactly right. I worried a lot. And the only reason I did it anyway, first of all, it's hard to keep me quiet. There you go. But secondly, as I said, because Deb was not a family member, if they had called it off, it would not have ruined my life. If this had been my child, I would have shut up and done anything they asked.

Patrick T. Smith

John, did you have any closing maybe comments or reflections you'd like to share with us as we bring our time to an end?

Dr. John Lantos

Just great, great questions. I mean, Jeff Baker asked one about gift relationships. I think that was more true for blood than for kidneys or solid organs. But I don't know the history well enough to say that. Can you unmute, Jeff? Do we have time? Do you know anything about the gift relationship in relation to kidneys?

Patrick T. Smith

Maybe not.

Patrick T. Smith

Yeah, I'm not sure if he's capable of doing that with the webinar. But I just want to say thank you very much to both of you for your work in the book project, also in your presentation, stimulating our thinking here in this space. Certainly, Martha, continue to wish you well in your journey in this regard, and we thank you for your reflections and your ethical reflections on this as well. We do encourage those of you who are on the Trent Center listserv to stay tuned for other talks and events that we'll be sponsoring at the Trent Center in the days ahead. Have a wonderful afternoon, and thank you so much for your attendance today.

Dr. John Lantos

Thank you. Thanks for having us. Bye.