Some Ethical and Policy Issues in Living Kidney Donation

Dr. Jack Hughes

Good evening, everyone. I'm Jack Hughes. I'm along with Dr. Sarah Hull, Associate Director of the Program for Biomedical Ethics. The Program for Biomedical Ethics, for those of you who are unfamiliar, sponsors

Dr. Jack Hughes

at least one or two sessions on a variety of ethical topics throughout the year. Your usual host, Mark Mercurio, who is the director of the Program for Biomedical Ethics, is in Florida dispensing enlightenment at a national conference. So he can't be with us today, and I will be your host. We are privileged tonight to have a presentation on the ethical and policy implications of living organ donation. And our speakers tonight are Martha Gershon, who is a writer and an advocate and a consultant. And although she was ambivalent about me revealing this, she is a graduate of both Harvard undergraduate and Harvard Business School. This is not something she she reveals to that many people. But most importantly, she is a living organ, a kidney donor to an unrelated recipient. We're also pleased to have Dr. John Lantos, who is professor of pediatrics at the University of Missouri in Kansas City. He is the chief of the Bioethics Center at Children's Mercy Hospital. He has written extensively on bioethical issues. and we are pleased to have them both tonight. We will also be joined later by Dr. Ramesh Batra, who will provide some commentary. Dr. Batra is the director of the Surgical Liver Transplant Unit and participates in other transplants here at Yale. Our speakers will talk from anywhere from 45 minutes or more to possibly an hour. We will have the rest of the time for questions and answers. We ask that you submit your questions and comments to the Q&A. I will moderate those and submit those to our speakers. So we will just to let you know that we have a hard stop at 6.30. So if you have submitted a question and it gets to be 6.29 and we have not

Dr. Jack Hughes

been able to fit your comment in. We apologize, but we do have to respect people's time. So without further ado, I'm going to turn it over to Dr. Lantos and Martha Gershon, who have a wonderful presentation for us. You see the title of their book here called Kidney to Share, which they co-wrote. So please take it away. Thank you very much.

Dr. John Lantos

And thank you for that really nice introduction. Thanks to everybody for coming out. We love talking about this book. It was a labor of love. Martha and I are old friends. And when she told me a few years ago that she had decided to donate a kidney, we got into some very interesting discussions over coffee, after religious services at our synagogue, over beers. And the whole thing was an interesting adventure. And we wrote the book just because we thought the discussions might be of interest to other people. So we're thrilled that you invited us and look forward to some interesting discussion.

Dr. Jack Hughes

What we try to do in the

Dr. John Lantos

book and what we did in our conversations was sort of go back and forth with Martha going through the experience and finding some some quirky some weird things about the whole process by which donors were evaluated and should come to me and I sort of try to put them in context of the history of living donors and organ transplantation and maybe some of the reasons why these unusual practices that we'll talk about still exist

Dr. John Lantos

and then the book goes back and forth between our two voices then between the sort of bioethics perspective and a personal narrative. So that's what we're going to do today. We'll try to end around 45 minutes because we love the discussion. But background, most people know this. Lots of people on the waiting list, 90,000 in the United States now. If you're waiting for a cadaver kidney, it's about three to five years on the waiting list. A lot of people don't make it that long. About a dozen people in the United States on the waiting list die every day. And some stop dialysis because it's too much. Some die of complications. And everybody wants a living donor. Living donors have better outcomes than cadaveric donors for all sorts of medical reasons. You can get better histocompatibility. You can schedule the transplant. And generally, living donors are extensively screened and tend to be really healthy people. So for all those reasons. But there aren't a lot of people who want to donate. Here's numbers from 2020. There were 17,000 donors altogether. Two-thirds of them or a little bit more were cadaveric donors. A little bit under a third were living donors. And about two-thirds of those went to a spouse, biologic relative, life partner, either directly or through paired exchanges, which we'll talk about a little bit. Only about a third of the bold down there were either anonymous or what Martha's was, a directed unrelated. And these are just, I don't know what the others are, but these are numbers from UNOS. People try really hard to get a living donor. And now, as I'll say, the pendulum has swung from deep suspicion and many transplant centers refusing to take unrelated people as living donors to

Dr. John Lantos

lots of heartwarming stories and lots of programs now encourage people who need a transplant to go out and crowdsource their search, go online, try to drum up some business. There's articles in magazines like Good Housekeeping about how to do this and it's becoming much more common. Now, transplant surgeons have made a big shift even since the 1980s, but certainly since the early days of transplant. In the earliest days, the only transplants that worked were from living donors, from relatives. But as immunosuppression got better, as histocompatibility matching got better, it became easier to take stranger donors. But transplant surgeons were pretty ambivalent about using any living donor. Don't like to operate on healthy people. Go figure. And worry a lot about causing harm to someone who didn't have a health problem to start with. And in the early days of transplant, Renee Fox and Judith Swayze wrote this book. They're medical sociologists who followed the pioneering efforts at Harvard in the 50s to understand immunology, some of the terrible outcomes that people had. They document how surgeons said, we don't want to operate on a living donor unless

David Mulligan

they're a

Dr. John Lantos

relative, unless they're family. Because as they say in the book, this was judged to be healthy altruism derived from general moral concern if you're trying to save a family member. But people who want to donate to a stranger, well, there was a lot of suspicion. The psychological benefits for living donors that made this come to be seen as healthy altruism were loving relationships. People would get greater self-esteem. They'd be seen as a hero by friends, family, and classmates. And they'd help the family. You know, if a family was taking care of someone with chronic kidney disease who was going to dialysis all the time, getting a transplant's much better quality of life. But there was this question about whether people who donate to strangers are just crazy. And there's a task force in Canada in the early part of this century that wanted to make national policy. And they did a study where they interviewed people who said, yeah, I'm willing to donate to a stranger. And the title of their article sort of captures its ambivalence. Are these people lunatics or saints?

Dr. John Lantos

And what they wrote in this paper is, contrary to our fears and apparently to their great surprise, there are a significant number of psychologically stable, altruistically motivated individuals who want to donate a kidney anonymously to a stranger and seek no material compensation in return.

Dr. John Lantos

And that led to change in policy in Canada, from skepticism about this to encouragement. Canada wasn't the only place where there was skepticism. In the UK, 1990 to 2005, there was a law in the books, the UK Human Organ Transplant Act, that prohibited commercial dealing in organs and permitted donation, non-commercial, to anybody except a genetic relative. They were so concerned that either the donors were crazy or that this must be some sort of coercion, some sort of under the table commercial transaction that they lumped those two together. The second half of that, the prohibition on donating to someone who was not a genetic relative was challenged and eventually struck down by the UK Supreme Court in 2005. But it's important to,

Dr. John Lantos

understand the history and the pervasive suspicion and distrust of people like the lovely woman you see there on your screen, Martha Gershon, who stepped up and decided that she was going to test the waters and donate to a woman she'd never met. You can decide for yourself tonight whether she's a lunatic or a saint.

Martha Gershun

I am really glad we don't take a poll when we finish these talks. Thank you, John. In 2017, I was recently retired and had a little bit of time on my hands. I had written a book about children in foster care, which had been my work for about a decade. And I was reading the Kansas City Jewish Chronicle and read an article. The story was about Deb Porter Gill, a 56-year-old woman who... now lived in Fort Lauderdale, Florida, but had previously lived in Kansas City, where I live now. She had previously gone to the synagogue where I went, where I met John.

Martha Gershun

She had two children who had gone to the religious school there, as my children had, and she was dying. Deb had been diagnosed with kidney disease in her 30s. She had... very soon thereafter, been diagnosed with diabetes. And while she was still a graduate student, she was in law school, she received a cadaveric transplant, kidney and pancreas, from a 44-year-old woman who died in a car accident, someone who had not been wearing their seatbelt, which is a very common generator of cadaveric organs. It had been 18 years. Deb's pancreas were still going strong, but her kidney was beginning to fail. And as many of you know, 18 years is a very long time for a cadaver kidney. Deb had been compliant with her meds. She'd been otherwise healthy and she'd hung on to that organ for a really long time, but now it was failing. And doctors told her that she wouldn't live out the waiting list, that if she had to wait three to five years to get another cadaveric kidney, she would die. So Deb, like the folks that John talked about in other ways, started looking for a living donor. Her siblings were not available. Her parents were too old. Her young adult children had been adopted and were not a biological match. So she turned to the community. And when I read the story, honest to God, I thought I'm going to do this. It was

Martha Gershun

a bolt of lightning. It wasn't for sure I'm going to do this, but it was for sure I'm going to try. This is something that spoke to me and it seemed very important. Now, you all need to know that like many other living organ donors, this was not a totally foreign idea. And often if you talk to living donors, you will hear stories like mine. Years before, my favorite cousin in Omaha had needed a kidney. I wasn't a match. other family members weren't available or weren't a match, but Anne's best friend was. And Anne received a living kidney donation from her best friend, Cheryl Cooper, at the University of Nebraska Medical Center in 2002 and lived another nine years. Those were nine years when I got to see my cousin, got to go to Omaha for Thanksgiving, for Passover. I was at her two daughters' weddings. She was at my son's bar mitzvah and my daughter's bat mitzvah. My family, And me personally benefited from nine more years when this lovely, lovely woman, because someone else had made the gift of a living organ. So I knew that being an organ donor doesn't just save somebody's life. It can change the entire trajectory of a family system. And while I hadn't been able to help Anne then, I thought perhaps I could help someone else now.

Martha Gershun

Also, like many living donors, and again, you'll hear this story over and over, I've been a regular blood donor throughout my life. And in fact, I had been registered to be a bone marrow donor. And miraculously, years before, I had matched with a six-year-old girl to be her bone marrow donor. That never happened. Something interrupted that process. I don't know what. HIPAA lives, and they don't tell you very much. She died. She got better. Somebody was a better match. But once before in my life, I had had that miraculous feeling that I could save someone else's life with my body. And when I read about Deb, I had this sense of maybe I could recapture that feeling. Maybe I could do it again.

Martha Gershun

I always want to tell people that medically, this was a fairly easy thing to do. I'm not afraid of needles. I've had surgery before. They took out my gallbladder once before they took something out of my abdomen. That part went well. That part was easy. The folks at Mayo are brilliant and they can do pain management like nobody's business. But the logistics were ridiculous. There were things about the system that were hard. I thought stupid. I thought possibly offensive. And because I'd studied customer experience as a business school student, because I'd spent my career in service operations, this was something that I felt I might be uniquely positioned to talk about both as a donor and with some academic and professional experience. And that's one of the reasons that John and I paired up was to see if we couldn't possibly make a difference in the system. So I'm going to tell you very quickly about three things that happened to me. If you all are like the folks we talked to at other medical centers, you are going to tell me this never, ever, ever would happen at your clinic and never, ever, ever happen at your hospital. And while I'm inclined to believe you, I will also tell you that while people tell us that all over the country, I hear routinely from living donors who are on these calls and webinars that similar things happened to them. So here are my very quick three examples. The first is that on the intake form, I disclosed that I occasionally spoke recreational pot. It's not legal where I live, but it's legal in Colorado, which is just a hop, skip, and a jump from my home in Kansas. My husband and I had been on vacation. Yes, I'd smoked some recreational pot. And this

Martha Gershun

was horrendous to the folks at the transplant center. And in fact, before they would even test my blood to be sure that I was a histocompatibility, histocompatible match, they asked if I would consent to speak to a substance abuse counselor. This was very annoying. But I said, sure. I was trying to save Deb's life. I wasn't in the business of making this... I didn't want to be a difficult patient. Well, it turned out that substance abuse counselors are in very short supply with this particular clinic. And when I went up for my three-day medical psych evaluation, they couldn't find an open appointment with a substance abuse counselor. They wanted me to come back, and this clinic is six hours from my home, at my expense, another night on the road, another hotel, for a one-hour substance abuse appointment because I disclosed I occasionally smoked a recreational joint. This didn't stop me from donating, but I couldn't help but wonder, what if I weren't

Martha Gershun

middle-class? What if I weren't highly educated? What if I weren't used to advocating for myself? What if I weren't white? Is that the kind of thing that might stop someone from pursuing living organ donation. And later, John's going to show you some data that will show you that, in fact, it is. Similarly, I disclosed on the same form that I sometimes saw a mental health professional. There's a psychologist in Kansas City who's been very helpful to me, helped me decide when it was time to retire, helps me untangle when I get up in knots about my family of origin. Very helpful life coach. This was terrifying. Did this mean I was crazy? Did this mean I was unstable, that I shouldn't donate? And they demanded that my entire mental health file be faxed up to the clinic. And my therapist said, no, that we don't do that. That my records are private. That this was not an issue. That once it went to committee, she couldn't guarantee that it wouldn't somehow cross over into my recipient's file. And instead, she wrote a letter saying I didn't have a clinical diagnosis. And in fact, she thought it would be fine for me to donate. As it turned out, the clinic accepted that. But again, think about someone without my really extraordinary privilege being told that if they'd ever seen a therapist, they had to jump through extra hoops. You can see how people start to back out of this process. My last story, and I really commend the book to you, both because it's a fun and interesting book, but also because this story is even better when you read about it. I'm sure many of you know that 30 days prior to any living organ donation, the donor must be tested for HIV, AIDS, and hepatitis. We do not want to transplant organs that might be infected into someone who's about to be flooded with immunosuppressant drugs. That makes all the sense in the world. What makes a lot less sense is that the way we do this for remote donors, as I was six hours from the clinic, see that box? That's the box that got shipped to my house. And it said, Please have your doctor draw blood in this vial and ship it back to us on dry ice. Well, I don't know about all of you, but I didn't know how to get dry ice. I didn't know how to ship on dry ice. I Googled it, and what I learned is that if you don't pack dry ice properly, it expands in the air and blows up the airplane. This was not reassuring. I called the Mayo Clinic. They didn't know how to ship on dry ice. They said your doctor will know. I called my doctor. My doctor said, we've never shipped anything in dry ice in our lives. You're on your own. It took me two days to find a industrial purveyor of transportation dry ice pellets who was certified and understood how to pack it. I had to find the one FedEx Depot in my entire metro area that would even accept dry ice packets. I had to learn to ship it. I had to coordinate with my physician to make sure all of this could be done in a timely manner. In the end, I took two days of my life to get my blood on dry ice, shipped up to the clinic within my 30-day window. And when I called and said, do we have some other options? They said, well, you can come three days before your surgery so that we have time to run the test. Well, that wasn't going to work. They said, we can draw blood the morning of your surgery and hope we get the results back in time. Well, that wasn't going to work. There were so many logistic barriers over something, honestly, that should be very simple. I don't understand why every transplant clinic in the country doesn't have an automatic relationship with a national shipper to manage dry ice things. But we push these barriers. We push these burdens onto the donor. The one person in the transplant process who literally has nothing to gain. Transplant clinic makes money on the transplant. Medicare or the private insurer saves a lot of money. As you all know, about $150,000 over the life of a kidney patient, transplantation over dialysis. Certainly the recipient and their family benefits a great deal. But the one person who's just trying to do a good deed ends up with all of these stigmas and barriers and hoops that honestly, it kind of took everything I had to jump over. And particularly at a time when we know that the greatest need for kidneys is from black and brown donors to help low-income people who are much more impacted by kidney disease. If you were trying to save the life of your mother, of your sister, what does it mean to have these barriers thrown in front of you? So John, I'll tell you some more about that.

Dr. John Lantos

So we started looking at barriers. We started looking at ways to increase the supply of organs. And in the book, spend a little time analyzing a bunch of different policy changes that have been proposed over the years. We'll talk about those a little bit. Opt-out versus opt-in markets, including perhaps chains and vouchers. We'll talk about that a little bit. And then the one that's more directly related to Martha's experience and that we end up in book really spending some time on, although in many of the discussions we've had over since the book's been published, people want to talk more about markets. But start with the opt out versus opt in. Some countries in the United States, if you want to be an organ donor, you have to check the box on your driver's license. In Spain, if you don't want to be an organ donor, you check the box on your driver's license. If you don't check the box, you're presumed to be consenting. Croatia does the same thing. And these two countries have the highest rates of kind of organ donation in the world. Would that work here? Does it work there because the policy change? Or does it work there because they have the kind of culture that would support that policy? We just don't know. The United States is big and complicated. It would be interesting if some states decided to try a pilot project of opt out versus opt in, both in terms of whether it would increase organ donation, but also whether it would be politically acceptable.

Dr. John Lantos

These opt out versus opt in count sort of as As nudges, as ways of moving from complacency or the status quo to nudging to concern, the Nuffield Council on Bioethics sort of looked at sort of a range of ways that you might change behavior from down at the bottom here doing nothing to at the top eliminating choice entirely. And then somewhere in the middle, guiding choice through changing the default, which in most places is below the line of acceptability. Guiding choice through incentives gets over into markets, eliminating choice entirely would probably be unacceptable in most democratic societies.

Dr. John Lantos

One of the big innovations of the last 25 years has been these paired exchanges or chain donations. Most people are probably familiar with them now. I want to give to a loved one and somebody else wants to give to a loved one, but we're not compatible. We give to each other's loved one. as illustrated in the slide here. I didn't know when we wrote this book and learned through the process that the idea for this was developed by an economist named Alvin Roth, who's a professor at Stanford now, and that Roth won the Nobel Prize in economics for proposing this. He clearly saw this as a market innovation. It's a barter market, he says.

Dr. John Lantos

He sees nothing wrong with that. In fact, he's advocating now for pilot studies of regulated markets that involve cash exchanges, but those haven't gone anywhere in most of the world. And so he proposed this alternative of barter market, which have now grown from paired exchanges to elaborate chains. The longest reported was 60 people, 30. donors, 30 recipients, it was reported in the New York Times. Once you start doing chain donations, donor one to recipient two, donor two to recipient three, it can break down and it may be the last recipient doesn't have a donor. And so people have started to talk about giving the first donor a voucher, a voucher or a future donation. That starts to look a little bit more like a market. Vouchers seem more like cash than a kidney does. Furthermore, in some programs like National Kidney Registry, you can get vouchers, you can get five vouchers that you can give to your loved ones. So they go to the head of the list instead of you. Each of these is nibbling away at this opposition to markets and raises the question about What's so wrong with markets anyway? And this has been a vigorous debate since the beginning of transplantation.

Dr. John Lantos

And it's interesting, too, because it's not the case that you can't sell any body part. There's a whole bunch of body parts you can sell. Eggs, sperm, breast milk, bone marrow, blood and plasma, hair.

Dr. John Lantos

You can rent your womb if you're a woman. These are all legal. And it's also true that allowing markets would show respect for autonomy, a principle that most bioethicists usually endorse. Adults of sound mind and body have a right to do what they want with their own body. And in this case, allowing them to not just donate, but maybe incentivizing them by offering payment would probably at least proponents of markets say, save lives. Another argument is consistency. Donating a kidney is a lot safer than many of the other things that we allow people to do for money. We document a few of them on this slide here. And there's an article in a law review a few years ago. We allow football players and boxers to be paid for entertaining. Why not allow kidney donors to be paid for saving lives when, as they document in this paper, the risks are much lower than

Dr. John Lantos

being a lineman or any professional football player for that matter. On the other side, and this has been a debate that's been stable and tied and Nobody's landed a knockout blow yet. Well, the people against markets, I guess. The two big concerns are coercion and exploitation. Coercion, rich people coercing poor people into giving up their organs when they don't really want to. The question is whether money is in fact coercive or instead merely incentive. But then there are all these more vague concerns about exploitation, objectification, instrumentalization. commodification of the body, all of which trouble many bioethicists and policymakers. And in fact, there are only a few countries in the world that have legalized markets in the kidneys. Most have strict laws against that. With that as some of the ideas about ways that people have talked about increasing the supply of organs, get to the end of Martha's story?

Martha Gershun

Well, despite the barriers, and there were many more than I mentioned earlier, Deb and I did in fact have a successful kidney transplant experience. Not the first time when I first went up to the Mayo Clinic to donate my kidney, went through a whole day of last minute assessments, the things you do at the very end, went back to the hotel, chugged the laxative to cleanse me out for the next morning. My phone rang. It was the nephrologist on call at the hospital. They had checked Deb in pre-surgery and she was too sick and they were calling off the surgery. This was another time when my role in this process was problematic. Because of HIPAA, the nephrology fellow couldn't tell me anything about Deb. I asked if I could talk to her. He said, she's crying too hard. She can't talk to you on the phone. I said, what am I supposed to do? Am I supposed to drive home? He said, I don't know. I don't know what you're supposed to do. I know how to take care of the patient here.

Martha Gershun

He said, I think in the morning, you should call your nurse coordinator. and ask what to do. This, of course, was very sensible advice because I don't know what I was thinking. I literally just chuggalugged an entire bottle of laxative. I really was not getting in the car to drive home, but it kind of tells you where my mind was. And in fact, I did in the morning call the nurse coordinator. The clinic was very confused about what to do with me. They understood how to take care of Deb. They did, in fact, get her well. The issue was a shadow on a lung x-ray. They were concerned it was an infection. Once again, you can't flood someone with immune suppressants if they have an active lung infection. It turned out it was fluid retention. Her kidneys really were failing at that point. Once they put her on mega diuretics, they were able to clear it up.

Martha Gershun

But they forgot about me, the other half of this transaction. my husband and I did drive back home. I couldn't just stay in a hotel in Rochester, Minnesota. The hospital called to tell me that Deb was better and that they were rescheduling the surgery. And they would confirm on Monday afternoon that we were good to go. They were going to do some last minute tests on Deb. And could I please be there Tuesday morning for early morning labs? And I said, do you want me to drive through the night? And they said, what do you mean? I said, I live in Kansas City. I am six hours away from you. What do you mean you're six hours away from us? They had lost track of me, even though my chart had said Kansas City, even though I had been working with them for nine months on this process. The fact that I wasn't just a part on a shelf, but that this kidney that they needed was in a living body who had a life in a place called Kansas City was problematic. It was One of the most stark examples of what we talk about in the book being the unique role of living donors, that we are both patient, medical patient, surgical patient, and part of the supply chain. But we're not the kind of part of a supply chain that just sits in a box on a shelf. We move around. We have our own life. And I don't think systems have really come to terms with this very specific and very unique role. We have our patient channel. We're really good at that. And we have our supply chain channel. We're really good at that, our vendors, our suppliers. But living donors are in the middle. They are one of the most ambiguous players in the medical system. Well, as it turned out, the clinic rescheduled the surgery. I kind of said I wasn't going to drive through the night. I thought that was a good way to get in a car wreck and create a two kidney donor opportunity. They moved the surgery so that I would have time to drive during the day to get to the clinic.

Martha Gershun

And our second surgery attempt was successful. And the picture you see was taken the day after surgery. At the foot of that bed is a IV bag filling with golden urine. My kidneys perfused with blood immediately, even before Deb was stitched up, and it started manufacturing urine immediately. So our surgery was a success. Deb and I both three years out continue to do extremely well. I actually talked to her on the phone yesterday. She's in Fort Lauderdale, Florida, hunkered down from COVID. The problem many living organ donors have that their immunosuppressant regimen makes it hard for them to respond to the vaccine. But she's doing great. She's chipper as ever. And it worked. The miracle of organ transplantation is that we were able to save someone's life. Someone who three years out from that stark diagnosis, you need to go on the kidney transplant waiting list, was supposed to be dead, is not dead because of scientists, because of medicine, and because of me.

Martha Gershun

One of the reasons I wanted to write the book, coerced John into writing the book, that we wanted to write the book together. is that this opportunity should be more available to more people. It's one thing to want to save the life of a stranger, to do a good deed, to have that very satisfying feeling of saving a life. But many people who do this are trying to save the life of a loved one. Two thirds of the people who do this are trying to save a child, a parent, a sibling, a spouse. And the barriers that crop up and make this hard are preventing people from saving the lives of loved ones. And those are the system adjustments that we hoped we could advocate for. John, I'll tell you some of our specific recommendations.

Dr. John Lantos

Yeah, no, you didn't coerce me. You promised me that we'd make a lot of money writing this.

Martha Gershun

I gave you a voucher.

Dr. John Lantos

So we ended up talking about three different kinds of barriers. And it's interesting, even since we started writing this and even since it's been published, it seems like there's sort of critical energy happening around the whole world of living donors where things are starting to change. But

Dr. John Lantos

the changes have to take place, or at least issues need to be addressed in these three different ways. areas. The first is the medical screening. That seems like the most straightforward, although raises some interesting ethical issues. Most transplant centers award themselves the absolute right to decide whether someone is low enough risk to be a kidney donor. This goes back to this

Dr. John Lantos

concern that surgeons had about operating on a perfectly healthy person. They want to do no harm. And that means that they want to make sure that kidney donors have no health problems. Most kidney donors have no problem with that and like the idea that they're being screened and told about the risk. But there may be situations where someone wants to donate to a loved one, but they're deemed to be too high risk. It raises questions about autonomy, just like the Oregon markets do, and about who should ultimately have the call about how much risk is acceptable risk. Martha talks in the book a little bit about a discovery in her pre-op about that her blood pressure was a little borderline elevated. And they said, you know, if you can't get that under control, we're not going to let you be a donor. She did get it under control, but what if she hadn't and still wanted to be a donor?

Dr. John Lantos

Who would have the right to say that's an acceptable risk or an inappropriate risk? Psychosocial stuff is even more interesting. We have a passage in the book written by a psychiatrist who was one of the people who worked with the teams in the 1980s charged with evaluating the mental health of these people who came forward and said they want to donate to a stranger. And he recreates this long interview that he did with a young woman who said, you know, I just want to... help someone out. I have two kidneys. I only need one. And the level of distrust and suspicion is palpable in this. We quote it at length in the book. That same distrust is what I think we think led Mayo Clinic to demand that Martha talk to a substance abuse counselor because she likes to get high in Colorado once in a while or... fax all of her mental health records because she occasionally seeks some

Dr. John Lantos

psychotherapy. But those seem both archaic in the sense that they reflect this prior deep suspicion that kidney donors or people who want to donate to a stranger are psychologically suspect and need to be cleared by experts in the field. But they're also not very evidence-based. I mean, the idea that a substance abuse counselor or a psychologist in a one-time visit could figure out who's going to have a bad psychological outcome flies in the face of everything we know about psychiatrists or psychologists' ability to prognosticate about who's really at risk for future mental health problems. People often cite the fact that some donors have committed suicide after donation. There are a couple of case reports, although in the only ones that I could find, the two case reports, both of the donors who committed suicide afterwards were screened by psychologists before the donation and were judged to be fit to donate. So it's an imperfect science at best. The final set of barriers are financial barriers,

Dr. John Lantos

Everything from shipping the dry ice to making extra trips up to Mayo. These are not reimbursed. All the medical costs are reimbursed by the recipient's insurance. But the out-of-pocket costs, the motels, the lost work, the cat sitters, the babysitters, the meals, these are expenses for the donor. And Martha and her husband, Don, calculated that They were at about $5,000 through the whole process of donation. Now, this could have real-world consequences. It's hard to find studies looking at how many people drop out of the process of being evaluated. But there was one abstract presented at a meeting in 2017 where they looked at everybody who started the process. They had about 1,000 people say, yeah, I'm interested in being a donor. Of those, about a third of the donor just dropped out or didn't show up. About a third were ruled out for medical reasons. In the end, only about 15% of the thousand went on to donate. But bolded there is the concern that the rate of people who ended up donating was twice as high among white people, Caucasians, and among African-Americans. Whether that's medical problems, whether that's psychosocial problems, this study didn't show. But It's possible that some of these psychosocial barriers are discouraging people who might otherwise want to donate.

Dr. John Lantos

There is some limited help for donors. CMS has a program called National Living Donor Assistance Center. It's been around for about 10 years. It's a means-tested program

Dr. Jack Hughes

and

Dr. John Lantos

somewhat quirkily, oddly, The means that is tested is the recipient's household income. And if the recipient's household income is low enough, then the donor can get lost wages, travel costs, and dependent care needs covered. It's hard to imagine the subcommittee that developed that policy, but there must have been some thought that if the recipient had enough money, they should pay the donor. And in fact, in Martha's case, that's exactly what happened. Deb's family reimbursed all the expenses. But why should it be means tested? Why should it be up to the donor to do that? There is a nonprofit organization, National Kidney Registry, started by someone who did a paired kidney exchange. And they only do paired and chain donations. They've facilitated many of them. They contract with transplant centers to help them increase the supply of donors. They're funded by philanthropy. And they will provide lost wages, travel, lodging, and even donation insurance, life and disability, for people who agree to

Dr. John Lantos

enter their program and participate in a paired or a chain donation. But again, why should non... profits fill the gap on this. If we think that living donors are better, we know that there's not enough of them, and we know that there are expenses associated with donations. Why isn't it national policy that they at least come out financially neutral rather than losing money for their act of altruism? So we finished the book with this modest proposal that Donors should be treated like donors. That is, people who give a kidney should be treated like people who give money. We all know that hospitals are very good at taking excellent care, coddling people who give them money and honoring them. The hall of benefactors in a prominent place in the hospital, they are lauded, they are applauded, they are rewarded with perks

Dr. John Lantos

for donating VIP programs and the like. Whereas organ donors, at least in Martha's story and the experience we tell and stories we've heard from many other people, are not even treated as well as patients in many cases and are treated more, as she said, like part of the supply chain. So this would just take a mindset shift. It wouldn't take a policy shift to do this. Getting money. Changing the screening process might take at least institutional policy changes, if not national policy changes. But it seems like we're at the point now where sort of the past of distrust of donors is over. Places are courting donors. They realize that this is a safe procedure when done right, and it saves lives. And so figuring out ways to treat donors better seems should be a national urgent priority. With that, we will stop and I'll be happy

Dr. John Lantos

to. Dr. Batra is going to make a few comments.

Dr. Jack Hughes

Well, actually, before Dr. Batra talks, I just want to remind everybody that continuing medical education credits are available. And if you look in the chat, you will see, I think you can look in the chat, But anyway, the texting code for today's session is 30715. Attendees who would like CMEs need to sign up for a Yale CME account and then record your attendance. Do that within 30 minutes after tonight's meeting. And now, Dr. Ramesh Batra has a few words to say. He is a director of the Liver Transplantation Service. here at Yale and performs other transplant surgeries. Dr. Batra.

Dr. Ramesh Batra

Thanks so much, Dr. Hughes. And I want to applaud Martha and John for sharing their experiences and story and really saving a life. Martha, great job over there. I wanted to put a quick commentary to what has been presented. I mean, I agree that U.S. has been behind other countries in terms of making it easy for living organ donors to help a stranger or a loved one, probably because U.S. is a much larger geographical territory than others, but I'm sure there is politics to that as you can always imagine. But as you see that UNOS and other organizations have really stepped up the game in the last decade by removing the financial disincentives for living donors through the NLDAC that you said, but obviously there is a ceiling to it. But especially when that is not enough, other organizations step in, and now there are indirect financial incentives by many states like tax credits or discounts on insurance premiums. Further on that, corporate organizations like OptumHealth, which is one of the largest payer for transplant, is using the corporate influence and corporate responsibility by launching a hero program. What that does is it compensates living organ donors for wages, travel, lodging as donors donate an organ to one of their employees. So hopefully this attitude will infect other corporate organizations besides the state and the federal government. And lastly, I want to say that there was a recent Living Donor Protection Act passed in 2021, both in the Senate and the House, that prohibits discriminating living organ donors in accessing life insurance policies, which was much harder to get, or higher premiums were there. So as we see that the spotlight on living donation is now on more than ever. So hopefully this will keep going in that direction. So Martha, I had a question for you now, and I'm running one of the studies at Yale trying to balance donor autonomy with physician paternalism. And I wanted to hear your perspective on that. How does one balance donor autonomy with physician paternalism in decisions regarding living organ donation as currently medical privilege obviously supersedes donor autonomy in decisions regarding the suitability to donate, especially knowing that 10 years ago, what we would say that living donors have no risk of developing kidney failure, but that's not true. The study in 2014 from Hopkins showed that the median time to develop end-stage renal disease can be 7.6 years.

Dr. Ramesh Batra

for even healthy living organ donors or living kidney donors. So the risk is not zero. How do you think we balance that, especially when you have been on both sides of the fence and seeing the perspective of the story? And John, my question to you would be regarding the opt-out scheme. How does USAID, you think, goes from opt-in to opt-out from your ethical standpoint? When a qualitative study from Europe comments, if I donate my organ, it is a gift, and I'm quoting this, and if you take them, it's a theft. How can that tone be softened so that it doesn't appear authoritarian by the government and doesn't malalign the donor economy? Let me just start the stage and then other questions could come in. Good start.

Martha Gershun

Why don't I, I'll tackle your questions first, but I did also want to tag to your comment about Optum. UnitedHealthcare really does have the very best program to help living donors because it's not just reimbursing, not reimbursing expenses, it's also lost wages. which again is a tremendous burden for many people. I was retired, my husband's an executive, he could take time off, but there are plenty of people at hourly jobs for whom the lost wages alone are sufficient disincentive to not be able to step up and save the life of a family member.

Martha Gershun

On the question of patient autonomy versus paternalism, that is a place I would give the Mayo Clinic an A+. The nephrologist that I worked with was an extraordinary man. And as John mentioned, in my three-day workup, we found out that I had borderline hypertension. And John didn't mention it, but also that I had borderline high blood sugar, high glucose levels. I had had gestational diabetes with my second pregnancy. I've always known that was a risk. And I was like three points over on each, right? Not a lot over. If I weren't trying to donate a kidney, I don't think anybody would have worried about me. But was I in good enough shape that I could be down a kidney and still be fine. I give the clinic a lot of credit for giving me significant information, a lot of time to process that information, and a lot of choice in how we moved over. And they gave me three very clear choices. You can back out now, always. They tell you that every minute you're talking to someone. If you want out now, we'll cover for you. Your recipient will never know what happened. They said, we can stop now. If this scares you, we can stop now. They said, you can go home and try and lose weight for three months and then come back and retest. I said, no woman in her right mind wants a three-month deadline to try and lose weight to save someone's life. That will make me crazy. No. They said, we can give you a pediatric dose of a hypertension medication and we can retest in two weeks and we can give you a more sophisticated blood glucose level test. I took that path. the blood glucose came in fine. I knew it would. My A1C has been fine for years. So I knew that wasn't going to be a problem. And in fact, the drug I took did lower my blood pressure. I stay on it today. I think I'm healthier because I stay on that drug because I donated a kidney. But I felt like I had a lot of say in that. I didn't have any say about the logistics. I didn't have any say about the scheduling. I didn't have any say about the things that impacted my real life, but things that impacted my medical life. I felt that they handled it extremely well. I hope it's that good across the board.

Dr. John Lantos

You wouldn't have had a say if you hadn't been able to get your blood pressure down or your glucose down.

David Mulligan

And

Dr. John Lantos

when they... I forget what the committee is called. I remember you were waiting by the phone to see if you'd been approved as a donor. But if they said no,

Dr. Ramesh Batra

it's too high. I think every program acts and reacts very differently because every program has had different experiences. People who have had bad experience, they tend to really fold over because the environment is very tightly regulated. One bad experience could really shut the program down. if they've had too many bad luck, like those suicides or accidents that happen. So I think it just goes to how the center has been doing it before, including the physicians that are practicing it. So it's kind of variable across the country.

Martha Gershun

It's interesting you say that, but I have to tell you, if I went into M-stage renal disease and died next year, I don't think anybody would report that back to the Mayo Clinic. How would they even know?

Dr. Ramesh Batra

So all living donors, well, at least in US, all the outcomes are looked at for one year. Outside US, and I know when I trained in England, your outcomes are seen, your living donation are seen till the life, till your life. So all those things are documented. Now, from a living donor standpoint, if you had an issue like that within the first year, which is much higher, then you can see how those things can really affect the publicity or the practice of that center, especially when you may have the best family support. Others who may not may really take this into some different kind of a monster, which has happened.

Dr. John Lantos

I wonder too if programs still use different criteria for related donors versus unrelated donors in terms of acceptable risk hard to get those data but i mean if a mother is trying to save her child and her blood pressure is three points above the threshold they may say like well that's okay because

Dr. Ramesh Batra

that's why when we are doing this study it will help understand that and one of my partners have actually done that study on kidney donors to see where the balance is. Because if you have a family member who's having dialysis three times a week and you have to drive them to dialysis, it's affecting your life. You want to take on as much risk as possible to really avoid seeing your loved one die or really wither down. As a parent, you might want to take more risk, but where that is balanced, nobody really knows. So that's hopefully the part of this study that we are doing. And we let you know how that goes.

Dr. John Lantos

That'll be interesting to see the results. On your question for me, donation versus theft, coercion, and defaults, changing from opt-in to opt-out doesn't take people's choice away. So what this gets into is the whole ethics of the nudging. Richard Thaler won the Nobel Prize in economics for his book that he wrote, work that he'd done with Cass Sunstein. on nudges, and when they wrote about it, they called it libertarian paternalism. That is to say, you're not taking anybody's choice away, but it turns out if your employer says you're going to put more money into your retirement fund unless you check this box, or if it says check this box if you want us to put more money in your retirement fund, the opt-out leads to more money in your retirement fund. It doesn't take away your choice. You can check the box. If you put desserts on the cafeteria line before the salads, more people take desserts. If you put the salads first, more people take salads. Choices are still there. So that's the libertarian part. The paternalism is what people have called choice architecture. You structure the choice in a way that predictably leads people to

Dr. John Lantos

be nudged in one direction or another. So with the opt-out, no, the opt-out, Yeah, opt out versus opt in in Spain and Croatia, you can still opt out. You just have to actively check the box to opt out. So I think that tries to thread the needle between keeping it a donation, keeping it theft. It's also very hard to tell from the published studies from Spain and Croatia what happens if somebody has not checked the opt out box and the family says, We don't want them to be a donor. It seems from some anecdotal stuff I've heard that people still let the family veto that, as I think we do in the United States, if somebody checks the opt-in box.

Dr. Ramesh Batra

Yeah. No, you're right. In Europe and in the UK, where they have recently implemented in last year, if the family or any other relative were to say no, obviously that goes out the door then. Then that is upheld.

Dr. John Lantos

So in that sense, too, it's more of a nudge than a taking away choice.

Dr. Jack Hughes

All right. Thank you, Dr. Batra, for those comments. And please feel free to make others. So let me direct a question to John and Martha.

Dr. Jack Hughes

What opportunities for bias are there in terms of unrelated donors choosing a person to donate to? Is a white middle-class woman with renal failure more likely to find an unrelated donor?

Dr. Jack Hughes

John, you want to

Martha Gershun

take that? Yes, the answer is yes. So in the way we... distribute cadaveric organs, we don't speak to the desirability of the recipient, the attractiveness of the recipient, how compelling their story is. We give the kidney to the person in greatest need or the person who's likely to live longest from the donation. This world of living organ donation gives a lot of extra points to people who look like Deb, right? Good looking blonde Jewish mothers of two. Who doesn't love that? Who doesn't love that story? And John and I have talked many times about the underlying question. Once I met Deb, would I have donated if I hadn't liked her? If she had been homophobic, I have a gay daughter. If she had been a racist, I work in the black community. I didn't have to worry that she was gonna be anti-Semitic. I met her through a Jewish newspaper. And would I have donated to a black Muslim 22 year old man, I don't know, our paths probably never would have crossed. But yes, I think there's significant bias. I think if you've already lost four or five teeth, it's going to be really hard for somebody to get excited about donating a kidney to you. John, what's your sense about

Dr. John Lantos

that? Absolutely. I mean, it's not like you didn't know there were opportunities to donate before. But when you read about Deb in the Jewish Chronicle, she reminded you of your cousin. And that's what tipped you over the edge. So

Dr. John Lantos

I think that clearly is at work. It's interesting that with cadaveric donors and the whole UNOS allocation system, we treat cadaveric donors, cadaveric organs as communal property. In theory, legally, if I wanted to be a cadaveric donor, I could specify, I only want this to go to a, I only want this to go to a white person. But people don't. And the system doesn't. But with directed donation, they clearly do. With the crowdsourcing too, there's lots of concerns about inequities and disparities in that too. People who have access to the technology. And nowadays there are consulting firms that will help you structure your crowdsourcing campaign. and studies about what sort of visuals are the most effective. And people who, if you have the money, will help you develop a more successful campaign. So yeah, there's a lot of concerns related to this question about disparities and inequities in direct and living donations.

Dr. Jack Hughes

So if we have time, I think it would be worth returning to that issue. Are there ways we can reconcile the inevitable susceptibility to inequities and deal with it in the directed organ system, the unrelated organ donor system. So let me pose another question here from the audience. Any reflections on experience of independent living donor advocate in the living donor process? thing, opportunities for ILDA, Independent Living Donor Advocate, that might have made the experience different or better for you? Martha?

Martha Gershun

Yes, I think so. So I did have a donor advocate, but she was a social worker connected to the clinic, which meant that she was always watching to be sure that I wasn't going unstable or that I wasn't at risk for suicide. She was a big help with a couple of things. After our surgery was called off, we were up in Rochester during the Jewish high holidays, she found a synagogue for my husband and me to go to services. Since I wasn't going to have surgery, I thought I should probably go to the synagogue. So she was helpful, but she belonged to the system that was giving me trouble. I think the ILDA program is really smart. And in fact, I'm signed up to be certified because other... because living donors like me who can help other people through the system. But the key word is the I, independent. They're not part of the clinic. So that if you want to bitch about the clinic or you want help navigating the clinic, they don't have a vested interest. They're not paid by that clinic. So yeah, I'm a big supporter of that ILDA program. I think it can make a big difference.

Dr. Jack Hughes

Thank you. Here's a question from Lori Bruce, who is... our Associate Director of the Interdisciplinary Bioethics Center. She says, China continues to engage in selling organs of political prisoners, knowingly ending deaths, ending in deaths of many thousands of Uyghurs and other ethnic and religious minorities. Is Dr. Lentos aware of any recent U.S. recipients of illegal Chinese organs? Dr. Lentos.

Dr. John Lantos

I am not. You know, if anybody would be aware, it would be the transplant programs. But if they were aware, it would mean that they were involved and they probably wouldn't want to talk about it. Yeah, you're right. None.

Dr. Jack Hughes

Okay. Well, that's reassuring. Here is... Here's a comment from an old friend. As a living altruistic kidney donor and knowing the procedure is really quite easy, how can we get that information out to the masses so that they and others can take the plunge into the superhero role of being a living donor?

Dr. Jack Hughes

What do you think?

Martha Gershun

Well, we wrote a book.

Dr. Jack Hughes

Good start.

Martha Gershun

And in fact. I've had the opportunity to write and speak less about the clinical side that we're talking about today, but more about the altruistic side, the meaningful side, the spiritual side. I just had an article in Hadassah Magazine, which goes out to 250,000 people in the United States about how meaningful the experience was. I didn't talk about dry ice. But the real truth is, I don't think the problem is telling people about it. There are people who want to do this. What we need to do is make it easy for them to do it. it's one thing that put more people into the funnel, but the funnel narrows too quickly. And particularly given that most people who need kidneys are black or brown and that their relatives and their friends are more likely to come from the black and brown communities, we need to make it easier for people who already want to do it. So yeah, I think widening the funnel at the top is good and smart and helpful and useful. And we did write a book to kind of do that, but... We have to keep that funnel from narrowing so fast.

Dr. Jack Hughes

With regard to the barriers that you encountered, and I know that you have brought some of those problems to Mayo Clinic, are you aware of changes? Have they improved to your knowledge?

Martha Gershun

I know of two things that are better now, and none of them are because of us. So they have changed their position on cannabis. And in fact, now they only require that you abstain from cannabis two to three weeks before the procedure. And I just know this because I have a couple of other friends who are being screened there. My hunch is that the change there has come about because cannabis is legal now in 23 states. And if you keep screening people out for that, you're going to be pretty soon screening out your population. The other big change has come about because of COVID and that's telehealth. When I did this in 2018, insurance companies were not yet reimbursing for telehealth appointments. And so I couldn't have my psychological screen online. I couldn't have my financial appointment online. I couldn't meet the social worker online. The Mayo Clinic, and I assume you folks and many other people are now doing that online, which is much more convenient, much easier for the donor. And we have COVID to thank for that.

Dr. Jack Hughes

Okay. Ramesh, can you tell us about what's happening at Yale?

Dr. Ramesh Batra

Yeah, so besides the financial piece, and I don't think that's a big one, it's the bigger one is a licensing part. And we recently, well, we couldn't either see somebody out of state on telehealth, but I think if I'm correct in saying, I think we can now see patients in Rhode Island or our psychologists can see patients in Rhode Island through telehealth, but I don't think we can. see further states like New Hampshire, Maine, or even further away because of the licensing constraints. So there are many hurdles that come, but you're right, COVID has definitely showed us a way forward where we can really look inwards and try to see if we can improve things.

Dr. Jack Hughes

Okay, thank you. Here's a, hold on just a second. Thanks to the speakers for sharing your story and to Dr. Batra for explaining the viewpoints of the transplant centers. As the immediate past president of UNOS, I can say that now the National Living Donor Assistance Fund will also support at a higher financial threshold and for lost wages, travel, lodging, and even childcare, independent care. And this is from David Mulligan. So that's good to hear. Absolutely.

Dr. John Lantos

Is there still a financial threshold, David, or is it just submit your receipts and get reimbursed? Can we unmute him?

Dr. Jack Hughes

Yeah, we'll have to see if he responds. Hang on just a second.

David Mulligan

Ah, there we go. Can you hear me?

Dr. John Lantos

Yeah.

David Mulligan

Ah, great. Thank you so much for unmuting me and allowing me to participate in such an excellent discussion. This is very stimulating and very timely. Thank you all for everything you do. Yes, the... The financial threshold is still set, but it's moved from about the 25th percentile to the 75th percentile. So a significant increase in accessibility for funding for all living donors. And as Martha had mentioned, OptumHealth had created as a payer the best support system for all their covered lives. And they are the largest coverage providers for the insured patients for transplant. So all of the donors for their covered patients will have all the support. Sadly, despite that, very few, only 8% had actually utilized it. So we do need to educate more. We need to get more messaging out. But as far as the federal support from the NALDAC goes, the threshold for support has moved up significantly much higher. So that almost all donors that have been done to date that we have financial data on would have access to some level of support for their needs. And it would include dependent care, childcare, travel, housing, and the opportunity for even lost wages. So that was new and much heard need.

Dr. Jack Hughes

Okay, thank you very much. So now I seem to have, I may have lost a couple of comments here and I apologize if I did. Let's just see where we can go next. So here's a comment.

Dr. Jack Hughes

One of our commentators who I have to track down her previous comment said that She's a living donor. She says that I wanted to say that my kidney lasted 16 years due to the hand of God. So thank you very much for that.

Dr. Jack Hughes

Okay.

Dr. Jack Hughes

Okay. Thank you for two great presentations on behalf of a professional group. Close to 200 psychiatrists and psychologists who work with organ recipients and donors within the Academy of Consultation Liaison Psychiatry. I want to reassure the panelists that there's a lot of effort happening from our community to assist our donor candidates. There are several aspects of mental illness and donation that were left out tonight. And no, we cannot evaluate patients across state lines without a license. So that's helpful. Thank you very much.

Dr. Jack Hughes

Now, I have a question, and again, I will try to locate one of the – I lost one of these.

Dr. Jack Hughes

Hang on just a second. Okay. All right. Well, here's a question that I have. John, you talked about the possibility of markets and – what might be desirable and giving credit to the objections. But as you see it, are there ways that we could make... What sort of constraints would we have to apply to a market system for organs in order to make them... equitable or to avoid any possibility of abuses that could arise from a market. We certainly see abuses in many other markets, but markets don't have to be totally free. So what sort of constraints, what sort of arrangements do you think would have to be made to make them work? So

Dr. John Lantos

we had some really interesting discussions with Al Roth about this because he's been thinking about this and working on it much longer than we have. Andy's a Nobel prize-winning economist and has some pretty elaborate proposals for what he calls a well-regulated market would look like. First of all, there would be a set price set by the government or a set reimbursement for the donor. Let's say 10,000, let's say 15,000. So there would not be a free market in kidneys. They wouldn't be sold to the highest bidder. And the money would come from the government or the insurance company. So it wouldn't allow the richest people to outbid poor people in terms of getting access to the kidney. Would it be coercive? Well, there the question is from whose perspective? Again, what Roth proposes and that I'm grudgingly coming around to, I was much more anti-market before engaging in this process, is a pilot project to study. So imagine, pick a state, California, Washington, Texas, doing a pilot project of reimbursing donors and give it three years and do it. with this set price and use the same sort of evaluation of donors that we use for altruistic donors today. And then

Dr. John Lantos

get someone like the psychologist who wrote in and talked about how they evaluate donors today prior to donation to do careful follow-up studies and see what people say. Do they have decisional regret? Are they depressed after they donate? They wish they'd made a different decision and get some data. People who are pro-market say, you know, this is like anything else, somewhat dangerous that people do for money. And we should trust people to evaluate their own trade-offs between taking risks and earning money for their family and see if it works. I mean, it would... at least move the debate to one that had some evidence. Right now, most of the data on markets comes from places where the markets are not well regulated. China and Iran, for example, where exploitation is rampant and coercion and lack of voluntariness clearly occurs and outcomes for donors seem to be terrible, but that doesn't seem to be the appropriate

Dr. Ramesh Batra

Okay. I want to follow on that, Jack, and wanted to ask John that perspective because we've kind of been discussing that in our transplant surgeons groups a lot. We worry that this commoditization that we talk about could lead to exploitation of people in the lower socioeconomic groups and sometimes even encourage living donors out of economic desperation to falsify their medical history. If that were to happen, then you have a huge potential of poor outcomes for both the donor and the recipient. And that could really take this into a snowball effect and spiral down in a very poor way. Now, I do agree that if people are getting paid to do sperm donation and hair donation,

Dr. Ramesh Batra

there should be some way that we should come up with how this should be. or they should be financial incentives. But I think the issue is the financial incentivization kind of has this crude tone to it, which is where we try to work around this and dilly-dally it and soften it or really cut that sharp edge of it by calling it financial disincentives. And I think which is why these things take much longer time than they do. But I also have the same concerns that this commoditization effect could really snowball into something that will affect the disease donation rates as well. And I really don't know what that would look like. Did you had any perspectives from your ethical groups when you discuss this?

Dr. John Lantos

So again, pilot study may be able to get some data. I mean, people have raised three concerns or more than that, but one is the one you talked about. People would lie on their forums because they're desperate for the money and it would lead to lower quality kidneys, worse outcomes, which would give transplant. I mean, it would be bad to the people involved, but it would also be bad to the transplant enterprise overall if it wasn't as successful. People have talked about crowd out.

Dr. John Lantos

that nobody's going to donate anymore. But the same people who might have donated now are going to get money for donating. So just raise the price, but not really increase the supply.

Dr. John Lantos

It'll come through.

Dr. Jack Hughes

What about the possibility that The family of a deceased cadaveric donor is going to want to be reimbursed for their loved one's organs. Why

Martha Gershun

not? One of the things we have heard a lot of discussion about

Martha Gershun

is an interesting question. Should we pay for the funerals of people whose organs are offered up for transplantation?

Martha Gershun

I am not as worried about coercing dead people to give up their organs as I am coercing living people. The potential negative health outcomes to dead people is zero. There are cultural issues, there are issues of mourning, there are issues of grief, but the dead person's dead. And there's been a lot of conversation about there are people who cannot afford a funeral for their loved ones. is this one way to make a difference there? And I think it's very compelling.

Dr. Jack Hughes

No, I didn't think we would be doing a lot of harm to the dead person. I was just wondering if the natural incentives on the family would be to say, well, look, you know, my late father is given the kidney. Why can't the family get a little something for this? And I don't know that that would be an unreasonable request. I personally like the idea of paying for the funeral.

Dr. Ramesh Batra

I think

Dr. Jack Hughes

that's

Dr. Ramesh Batra

quite... So that has been done in Chicago. I was in Gift of Hope, the OPO. They used to reimburse that, but I think that program fell apart as well. In the start, they were doing that quite a lot. but then obviously because it's not a national thing, one OP was doing it and obviously probably they had a complaint of some sort and it kind of had to be stopped. So unless there is a collective effort where then people don't feel that they are the kind of the zebra and doing it on their own whim or their own ways, I think then only it kind of works. But yeah, that is something that has been done and being discussed as well. It's a great idea.

Dr. Jack Hughes

Thank you. Just to follow on to the previous question, the previous note about the unethical removal of organs in China and other countries, is there anything that is being done or is there anything that can be done to try to affect those sorts of abuses? I don't know that that's a fair question.

Martha Gershun

What I'm going to throw out is that there are human rights abuses in many, many countries in many, many horrific ways. And the truth is, John and I really only studied the United States. But it's horrific. But I could give you a list of other horrible things that we do to people, depriving them of their health and their livelihood and their property.

Dr. Jack Hughes

Absolutely.

Dr. Ramesh Batra

Isn't the US president meeting the Chinese president these days? Maybe he can get an email from us.

Dr. John Lantos

I don't know that this came to this topic. The transplant community has spoken out against this.

Dr. Jack Hughes

I'm not sure that there's much else that we can do. Then let me read from Dr. Batra. He's from your organization. Thank you for... The donation and the work of the panel, I have the privilege of working with Dr. Batra on the Living Donor Team, and it's helpful to hear your perspectives as we are constantly working to refine our process here at Yale and to reduce barriers, and recently spent time working to define a just process for allocation of non-directed graphs. We have established a clear algorithm that we use to educate non-directed donors on up front to aim to reduce disparity. Your perspective is appreciated.

Dr. John Lantos

It sounds great. I mean, I think people have found in trying to develop the UNOS algorithms for cadaveric donors that the goal is good, but the devil's in the details. In particular, and I'm sure you struggled with this as you were working on your algorithm, If the goal is to get the best outcome, you tend to take the healthiest recipients. If the goal is to save the most lives, you take the sickest recipients. But how sick would you have to be before you're too sick and you're not going to do well? And Black people tend to be sicker than white people. They have more burden of chronic disease. And so balancing those two. I'd love to see your algorithm and see how you address that. Hope you're going to public. All

Dr. Jack Hughes

right.

Dr. Jack Hughes

From a colleague, I think the journals have refused to publish any works that include data from Chinese living donations from prisoners. That's a good idea. That's a sanction. Let's see, we have in a while, let me read one more comment, and I apologize if people have been left out. I'd like to note a pilot project called the Living Donor Collective that is collecting long-term follow-up data in living donors, currently including kidney and liver transplant programs, and now expanding beyond a pilot to engage with a broader number of programs. This will be helpful. for us to obtain more granular data on donor outcomes that can guide adjustment in thresholds of acceptance and risk assessment mitigation going forward. So more useful commentary. And I would like to, as we are out of time, I would very much like to thank Dr. Lantos, Martha Gershon, and Ramesh Batra for a really stimulating presentation. presentation and discussion. I really, I think this has been a, and I'd like to thank our audience for also participating. I think this has been a terrific session. And thank you all for joining us, for gracing us with your presence. This has been

Dr. Jack Hughes

well done and remarkable. Thank you very much. And thank you, David Mulligan as well, and all our commentators.

Dr. John Lantos

Thanks for having us. Thank you all

Dr. Ramesh Batra

so much.

Dr. Jack Hughes

Yeah, thank you.

Dr. Ramesh Batra

Thank you, excellent job.