Episode 97: Martha Gershun & John D. Lantos—Authors of Kidney to Share

Kent Bressler

Hello everyone, Kent Bressler here. I want to welcome you to Kent's Kidney Stories. During our time together over these podcasts, I'd like to discuss kidney disease. I'd like to tell you about my journey as a transplant patient, but also talk about dialysis, kidney donation, and just about anything else that might be of interest. Kent's Kidney Stories. podcast endorsed and sponsored by KidneySolutions.org.

Kent Bressler

Hello, everyone. This is Kent Bressler, and we're going to do some podcasting. It's morning where I am. I don't know what it is where you are, but blessings to y'all. Let's start with prayer this morning. Dear God, everywhere we walk, let it be on your path. Everything we see, let it be through your eyes. Everything we do, let it be your will. For every hardship we face, let us place it in your hands. Every emotion we feel, let it be your spirit moving in us. Everything that we seek, Let us find it in your love. My dear God, we thank you for this very day. We ask not to know where we are going, but only to know and feel in the depths of our hearts and souls that you are with us. You are guiding us, and we are safe. And in Jesus' name, we offer ourselves to you. Amen.

Kent Bressler

Hello, everybody, and it's just really a pleasure today to get back underway with some podcasts, and I have a really good one in store for you this morning. I wanted to take this time to thank all of you for making Ken's Kidney Stories a real success in my view. Your encouragement and participation has given me a pretty great sense of pride. Today's podcast will be episode 97.

Kent Bressler

And we hope that you've enjoyed the past 96 and enjoyed the ones that are coming. It is a plateau, a great plateau to reach 100. And I will have a special episode. Episode 100 is going to be really special in my book. I'll let you know about that later on down the road. I want to thank all my volunteers at Kidney Solutions who've been very busy over the past few weeks. And I'd love to continue with the pride that we give to our volunteers. our folks that are in with Kidney Solutions. We have an excellent group of people, but we also have an excellent community. So once again, thanks for your tremendous support. So without further ado, how canned is that? Let's get started. I want to welcome this morning, Martha Gershon and Dr. John Lantos as my guest. And they're partners in a... I think a spectacular book called Kidney to Share. And this book really shoots straight on giving the reader a feel with passion of how it is to navigate the world of kidney donation and transplant. So Martha and Dr. Lantos, welcome. Thank you.

Martha Gershun

Good to be here.

Kent Bressler

Martha, kind of set the stage for us. I understand that you are... Not only a co-author here, but you're an altruistic donor. Can you give me a little background?

Martha Gershun

Absolutely. And thanks so much for having us here to tell our story. I donated a kidney in 2018 at the Mayo Clinic in Rochester, Minnesota, to a woman I read about in the newspaper. I was not looking to be a kidney donor. I read a story, someone who needed a kidney. didn't live here in Kansas City, but she had been from this community, knew enough to put an article in the Jewish Chronicle in my community. I was recently retired from nonprofit work. And as I read this story, I thought I could do this. It was sort of one of those light bulb moments.

Martha Gershun

What transpired was a meaningful, difficult, inspiring, difficult journey. And because my own background, I'm an MBA from the Harvard Business School, I have a career leading both corporate organizations and nonprofits, all in the service sector. I had some sense about customer experience, about customer service, about appropriate logistics and how things probably should work in an optimized system. And That academic knowledge combined with my personal experience led to a pretty frustrating belief that we could do better, that this is a wonderful thing to allow people to do, and it's certainly a wonderful thing to save people's lives, but it is ridiculous how hard it is. So I was complaining to my dear friend, John Lantos. Aren't I fortunate to have a friend who is both a physician and a bioethicist? And John listened to me both patiently and impatiently. And when I finally said, this is making me nuts, I want to write about it. He said, okay, let's do it together. Let's see if we can't explain this story using my experience as a case and possibly impact the system of living kidney donation and maybe make some improvements. John, is that your recollection of how this happened?

Dr. John Lantos

Oh, that's a sanitized version. You left out the copious alcohol and some of the arguments we had. But yeah, that was basically the story.

Dr. John Lantos

And from my perspective, it was fascinating because I've been thinking about ethical issues related to kidney donation for decades now. I've been practicing medicine and doing bioethics since the mid-'80s. have seen all sorts of changes in the way we think about many of the issues, ethical issues around kidney donation or any other organ donation, starting with concepts like brain death and how controversial that was when it was first

Dr. John Lantos

proposed as a new and alternative and somewhat radical definition of what it means to be dead. People could be dead while their hearts were still beating. And then on to the whole big debate about what people have called altruistic donors or stranger donors, or there's many other names, but people who donate to someone other than a family member or a very close friend. And so knowing about these debates and then listening to Martha tell stories about what was going on in her experience at the Mayo Clinic, I realized how much sort of history was shaping current practice, but in many ways it no longer made sense. And there were lots of holdover practices that were around because of tradition or because of debates that had been active 30 years ago but were now resolved. And based on that dialogue, like the ones we were having as we would meet and talk about what was going on, might make an interesting book and might be of use to other people going through the process.

Kent Bressler

Well, it surely is. I can tell you that right now. I got a kick out of it because I lived it. Although I had a living related donor, I lived it. And that's now working with a lot of people who are getting deceased donors, but working directly with altruistic donors, it's very fantastic. And it's amazing how much difference there is in each transplant program and how much difficulty there is. walking through that and taking that journey and actually making it go smooth. It doesn't, it does not go smooth and it takes a long time. Maybe you guys could speak to the, uh, this problem of, of, of what's good for the patient and really what, what, what's get somebody started and how quickly they can actually get to transplant. How, by what reasoning is it so difficult?

Martha Gershun

Well, I can talk specifically about the story that I was intimately involved in. My kidney recipient, I was the second go-round. Deb was in her mid-50s by the time I read about her and eventually met her. She had developed a loss of kidney function in law school many, many years before.

Martha Gershun

Also some unrelated diabetes. And she was put on the waiting list for kidney pancreas transplant. As you know, that has to be a cadaveric donor. We don't yet do living pancreas transplants, only in an experimental way. And Deb was fortunate enough to quite quickly receive a donation from a woman who had been in a car accident. A good reason to remember to wear your seatbelt. By the time I heard about Deb, Her pancreas were doing great, but her kidney was starting to fail. And she got back on the list very quickly. But they told her that she would not live long enough to find a cadaveric donor, that it would take too long, and she would need to find a living donor. So she's one of those people who launched a search. And she had privilege. She had internet access. She was very attractive and charming. And so her search was pretty immediately successful. It found me. John, what are you hearing about other people?

Dr. John Lantos

There is a huge waiting list of people awaiting kidneys. Lots of people take to social media to try to find a donor. And there's lots of ethical controversy about the use of digital media, particularly the impact it has on exacerbating health disparities or inequalities. We know that people who have access to media tend to be wealthier. And running digital media campaigns has become an expensive business doing it well. And there are tricks to doing it and you can hire consultants to do it. And people have likened it to a beauty contest. I mean, you want to put a story out there that's going to make you attractive to a potential donor. And the things that make you attractive may or may not be real or may or may not tell the whole story. of who you are, but even if they are real, the idea that kidneys should be donated based on things other than medical indications for donation raises ethical questions about justice and fairness.

Martha Gershun

One of the things that hit me as I entered the process was that even when you find a donor, and Deb found me really very quickly, or I found Deb, that match was made very quickly. that the barriers that then start getting thrown in the way of the potential donor, and this could be whether they are a family member or a friend or someone like me, a stranger who steps up, start to make it so hard that people fall out. And there's pretty good data that only about 10 to 20% of the people who raise their hand to do this actually make it all the way through. And One of the things that John and I really wanted to focus on and shine a light on within the system are some of those things that don't really make any sense. So from a lead management perspective, there's getting the potential donor to express interest, and then there's getting them to match, of course, the histocompatibility match. But even after those great successes, 80% of the people still get lost in the rest of the process.

Kent Bressler

Exactly.

Martha Gershun

And that's a shame. That's a lot of drop-off.

Kent Bressler

There's a wide disparity, I think, in the different types of programs, how they address it. One of the issues is just if you do have a donor, you're only going to test one of them at a time. And that might... be something that we want to talk about right now in the get-go, because I've had patients who have had 20 donors, potential donors, all passed through the system, and none of them met standards because of health. 20, one person, a couple of them more, all right? And so let's speak to that. What is it? Is it kind of like, I think it was in chapter eight, unnecessary bureaucratic barriers. Is that because that a pretty good term to use? I loved it, actually loved the whole chapter. And so explain that a little bit to me.

Martha Gershun

Well, I will tell you something that I came to learn in the process. So that happened to us. Once I was a histocompatibility match, the clinic told me, you are the number one designated donor, we will test no one else as long as you were being evaluated. So if you want to drop out, Drop out now. Tell us, you know, no stigma, no judgment to the dropping out. But let us know when you know so that we can move to the next person. That created a lot of anxiety in me. Like, okay, then we better get the medical evaluation done. We better get the psychosocial done. We better be sure this is going to work because I felt the burden of standing between my recipient and any other potential donor. So then when the clinic was slow to schedule appointments, wanted to redo stuff, was slow to redo this stuff, I got more and more anxious knowing that nobody else's blood was even being tested. Yeah, you were

Kent Bressler

all in.

Martha Gershun

Yeah. And my recipient's getting sicker and sicker. And if now the clinic says I'm disqualified for good reason, there's no pipeline. They haven't started lining up other donors. So I ask a lot of questions, right? The business person in me, and I was told, gee, this is no surprise. That's because insurance won't pay to test the blood of more than one person at a time. They're saving money. But as John and I did the research for the book, I came to understand what I think a lot of people in this field understand very clearly, which is that every living kidney transplant saves the insurance company, whether it's private insurance or Medicare. minimum $150,000, probably more over the lifetime cost of dialysis for that patient. So the insurance company, private or Medicare, has $150,000 margin that they could play with to test more than one person at the same time.

Kent Bressler

You want to say that term again, $150,000? And that's

Martha Gershun

the minimum number I found. I have seen it estimated as high as $400,000. Much

Kent Bressler

higher, yes.

Martha Gershun

So there's that much play in the system. If they can get somebody off dialysis and get them a living kidney transplant, which, oh, by the way, is best practice in the field and will make them feel better. How often is it that the best health outcome is also the cheapest alternative, right?

Kent Bressler

Yeah, absolutely.

Martha Gershun

And yet we don't do this parallel assessment. It's sequential. which I have to tell you, place A, I hope I'm not overstating it, a mental health burden on the potential donor to know that I was on the critical path and couldn't do anything to help my recipient develop a plan B.

Kent Bressler

So when you have distance between you, all right, if you're not in the same town or the same vicinity, Having to get tested via a transplant program requires, in some cases, they require you to come in. They have you travel at your own expense to get there and do what it is they want done. I do know of programs that will send you test kits that you can have it done and then work with the private facility or your local facility. That does not happen on, they want, a lot of them want you. And I think in particular, a lot of hospitals want you there so they can do all of their exams and they don't take much for having a psychological consult or having a medical consult or a heart consult from your local guy.

Martha Gershun

The only tests that my clinic and Mayo Clinic, top-notch, best in the world, they do more living kidney transplants than any other clinic. program in our country. So, you know, a lot of props to them. And I felt very safe medically in their hands. They took my colonoscopy, my pap smear, and my mammogram from previous providers. They let me fax those results up. Everything else they required, they do. Even really simple things like HIV and hepatitis blood testing, which honestly we could do here in Kansas City. You know, we're not really in the sticks. And They sent me kits, you know, those boxes. But the kits have to be sent back. You have to find a FedEx provider. In one case, I had to run all over town to find dry ice. Very

Kent Bressler

interesting. Dry ice to send it back in.

Martha Gershun

So, you know, sending you a kit isn't really a convenient answer. I have heard that since COVID, clinics are doing a little more remotely and they're doing some things by telehealth. So I had to go up for three days and include a psych eval, a financial evaluation. You read in the book the story about the substance abuse counselor. We can talk about that later if you want to get up. I have heard some clinics are doing those things by telehealth since COVID. But the bottom line is the transplant clinic wants to put their eyes on you. John, do you have a sense of why hospitals do that? I

Dr. John Lantos

don't think this is specific. to transplant. I think many of these issues are part of the dysfunction of the American health care system overall. Even figuring out what insurance companies will pay and whether they can bank the savings. I mean, yes, overall costs are lower for people get a kidney transplant compared to staying on dialysis. But will the insurance company that pays for the evaluation and the transplant be the patient's insurance company three or four or five years from now and be the ones to benefit from those savings? There is no guarantee. So that's a problem for why insurance companies don't see a financial incentive for any preventive because we have a system where it's not all centralized and people don't stick with the same insurance company. It's hopelessly complex and raises costs.

Kent Bressler

One of the issues, though, is actually how important is having a healthy donor. I think that's really the most important aspect of the talk here. It's not that, oh, you know, we could just go through willy-nilly and quickly do this. It's very important for the transplant program to have a healthy, viable, it's important to the recipient and it's important to the donor. I'm going to speak to that. I would appreciate that.

Dr. John Lantos

Yeah, that's a huge issue. And really the question is how healthy? I think everybody understands that. Some health screening of the donor is appropriate and certain health problems, if the donor has them, severe hypertension, bad diabetes, things that are known to cause renal failure themselves are going to disqualify somebody from being a donor. You're not going to take a kidney out because of the harm to the donor. There are also things that might be harmful to the recipient if the donor had cancer or some infectious disease, the recipient would get that when they get the transplant. So sort of the first level of health screening for donors is completely medically appropriate, essential, and I think every donor would appreciate.

Kent Bressler

Oh, sure. Absolutely.

Dr. John Lantos

Not being put under risk. At the margin, though, a different sort of question arises. What if you, as was the case For Martha, your blood pressure is slightly elevated

Dr. John Lantos

and you can take medication and treat that elevation. Is that a medical contraindication severe enough that you would say, no, we the transplant team will not permit you to donate? Or should that fall into the category of shared decision-making and informed consent?

Kent Bressler

Yes.

Dr. John Lantos

You could say to the potential donor, look, Your blood pressure was a little high on three out of five readings. We think this is easily controllable with medication. We don't think there's going to be a long-term consequence. But hypertension is one of the risk factors for kidney failure. And if you just have one kidney instead of two, that's another risk factor. Do you want to go forward with this? Put it in the shared decision-making category rather than the absolute medical contraindication category. And where to draw that line is Not straightforward.

Kent Bressler

And who does draw that line? Who is it specifically? Well,

Dr. John Lantos

kidney transplant programs reserve the right to reject potential donors for their own medical reasons. So as Martha tells in the book, and maybe you were aware of in your own experience, the donor goes through this rigorous and comprehensive evaluation, and then the team meets, looks at all the data. Yep.

Kent Bressler

And

Dr. John Lantos

decides. And says you're acceptable or you're not. And if they say you're not, you're out at that program. Right. Although there are no universal criteria.

Kent Bressler

Exactly. Great point. Different

Dr. John Lantos

programs draw that line in different places. And he might put it in the medical contraindication versus informed consent and shared decision making bucket based on their own somewhat idiosyncratic criteria.

Kent Bressler

Yeah, just the simple look at blood pressure. I don't know how many people call me back and said, well, they rejected me because of my blood pressure. And that was on the first blush, you know, in the book. Martha spells it out perfectly that she challenged that. She said, you know, let's get my blood pressure. If it is an issue, let's get it under control for my sake. And then, you know, I still want to do this. And a lot of people don't do that. They just say, well, they rejected me. And that's why mentoring, working with someone and say, no, let's go back in and review that. Let's get back in there and talk about that. It's very important because once you don't have someone that's helping you with that, or if you're not strong enough to do it on your own, you're pretty much lost. You're gone because you don't know the system.

Dr. John Lantos

And it's a complicated decision becoming a living donor. And so the counseling is not... straightforward, and in a way this gets back to the question of why they only evaluate one donor at a time. To do it right is not trivial. Martha was up there for three days on site at her own expense. Yes,

Kent Bressler

yes.

Dr. John Lantos

But it cost the system money too. She saw lots of specialists, she had lots of tests, and all donors do. So if you really could bring in 50 at once,

Dr. John Lantos

that could be significantly costly.

Kent Bressler

Well, we can all say that we need to take a look at those kinds of things. And I hope that at some point in time, there is a way to look at this all. But it is a monumental problem because time is of the essence, especially if you're in a position like Martha's recipient and myself. I mean, I was very grateful that it could happen so quickly. but I've got people that have been out and waiting and waiting and waiting and waiting. So it's very difficult, but it's something that's timely. It needs to be approached. We need to work on that. I really don't know what the course is, but it's not individualized. The transplant team's got to turn around and look at themselves and make it, I think, make it easier. And there should be some kind of standardization across the board. I think it would be helpful to have some type of standardization of care and approach. What are your thoughts?

Dr. John Lantos

Absolutely, it would be helpful. Again, it's not specific to transplantation, but a generic problem in our decentralized healthcare system.

Kent Bressler

Martha, did

Martha Gershun

you... I wanted to say one thing just to give them credit, which is while I... pushed on many, many, many things. I wanna give the Mayo Clinic credit for helping on the hypertension issue. And that they counseled me really carefully through that, that these are the risks and these are the medications that might help. And it took a lot for me to push through, but they didn't automatically reject me. They gave me a lot of counseling to help me make it through that. And at one point they sort of said, you know, you'll be healthier stay on this medication for your whole life anyway right right like aren't you glad you did this process because now you'll be healthier for the rest of your life so um some credit to them for doing that

Kent Bressler

well i think there's there's credit to it's a huge huge organization but they do a fantastic job with people i i'm you know we're not we're not here and you you surely didn't in your book uh do the old tom tom beat up beat up mayo that did not happen and that's i think it's a You just draw out the issues that are there and hopefully that they learned a lot from your experience. And I hope a lot of them read the book

Kent Bressler

in all honesty, and I'm sure they did. So I wanted to ask, there's a huge supply and it's a real, a bad supply. There's not enough organs going around that with 90,000 kidney patients on the list, just on the list, waiting for a kidney. I have several on my list are waiting. Okay. And waiting is like a, it's really shouldn't be in a recipient's vocabulary because it's very disconcerting. And all the time that you're quote waiting, your health is deteriorating. I mean, just because you can't find a donor, your illness does not stop progressing. And that's the standard problem with it. So consequently, it behooves you to find some way of trying to get that donor as quickly as possible. Because waiting on the list, uh-uh, it's not gonna work. Waiting on somebody's list at some transplant program can last you as much as 10, 11 years. I mean, really, think about that. I do all the time with a lot of my patients.

Martha Gershun

One of the things that strikes me as really interesting is this is one of the very few medical procedures. Now, John's about to give us a whole bunch of counterexamples, but I'm still gonna try this argument. It's one of the few medical procedures. where the provider, your hospital, your clinic essentially says, this is the item you need to succeed with this surgery or this condition, go find it, right? Go find the medication, go find the valve, go find the part, go find the tubing somewhere in the general community. my experience with the healthcare system and many other kind of significant and serious ways is that by and large, they have the supply themselves. They take procuring supply upon themselves. And we do that with cadaveric organs, right? You don't go find your own cadaveric organ. But with living donors, we ask the patient, the person who's sickest, maybe the person with the least resources, certainly the person with the most trauma, to go find the thing they need to save their life. That's pretty weird if you think about it.

Kent Bressler

Well, what are the other options other than you doing it yourself? There's plenty of options, I suspect. But in certain cases, in my experience, one of the best ways to do it is to go all in to try to find those people by yourself.

Martha Gershun

It's absolutely quite individual decision, right? I mean, if my kid needed a kidney, my husband needed a kidney, if someday I need a kidney, you go for it that way. But from a system perspective, I don't know. I'm not a policymaker, but I have wondered why UNOS is only in the business of cadaveric organs. Why do we not have a true national kidney registry for potential donors? Maybe you just sign up and say, I'm only eligible if it's a friend or a family member who needs a kidney. You know, I may not be signing up to be an altruistic donor for anybody who needs one. But the fact that this is a uniquely personal ask and everything else we do in the medical sense is systemic. I don't know. John, is this pie in the sky, my thoughts here?

Dr. John Lantos

It's a little bit pie in the sky. I mean, I think... Let me think about bone marrow.

Dr. John Lantos

There are registries for people who are willing to be bone marrow donors. They're run by private entities, not by governmental entities. People sign up. It's a less invasive donation than a kidney donation. Private foundations have stepped in with kidneys and tried to facilitate donations and to help out. But I don't think if there was a national program for people willing to be kidney donors, a whole lot of people would sign up and say, oh, yeah, call me. 90,000 people waiting.

Kent Bressler

Yeah, it's a matter of numbers. But I think everything should be explored. I mean, the box is open. It's not closed. Right. And I know you feel that way, Dr. and Martha, because I mean, we we are so boxed into doing what's what's been done. All right. And we we walk and we walk and we talk and we talk. But no one wants to try to make something different, make it easier, make it more compatible with life and with some speed. OK, not I'm not talking about. warp speed i'm talking about at least saying it you know when you get in there it's not going to take a year if you find a donor how long should it really take you to get to get that donor through the process i don't think there's any way you could predict that or say well it's only going to take two days or it's going to take two years but at least you should have a standard within your facility that says these people need to be pushed because they're you know We don't have time to wait, all right? Waiting should not be in the vocabulary. That's my view of

Martha Gershun

it. Kent, one of the things I've heard as I've talked to clinicians around the country and donors and recipients is that there's some interest on the provider side, on the clinician side, in taking this very slowly and very methodically to be sure that people like me, to be sure that donors are not coerced. to be sure that we're not giddy with the adrenaline rush of altruism and that we have time to think about this and make a very well-considered decision. And I think there's some value. You don't want to dial a 1-800 number and a week later be on an operating table. But I do think to the autonomy of potential donors, who are competent to think this through, who do have informed consent, who are well-informed about the risks and about the procedure. And there's some number between one week and one year that makes more sense. My transplant took nine months. That's actually on the short end of these things. And I

Martha Gershun

didn't need nine months to be sure. I was sure by the time my husband was taking a week off work and I was taking a week off my projects to drive to the Mayo Clinic for three days of full evaluation, I was sure. I was already making a pretty significant commitment. I also think we don't give very much thought to distinguishing between people like me, altruistic donors, who are essentially doing a good deed. It's a volunteer project. I don't think we have a lot of rights in this country to do a volunteer project. It would help the healthcare system if more people did this, but it wasn't important to my mental health to be allowed. I could go work on a food pantry. But so many living kidney donors, almost all living kidney donors are trying to save the life of someone they know, probably relative. And for those folks, I think it's really patronizing and condescending to say, Now, now, don't you want to think a little longer about whether or not you really want to save your mother's life?

Kent Bressler

She's only got a few years.

Martha Gershun

It seems to me that, like in many other situations, we might do well to respect the autonomy and the agency of the adults, right? Let's say you have to be an adult, you have to be mentally competent, but of non-coerced adults to make these decisions. There is also great pain and tragedy to losing a family member to kidney disease.

Kent Bressler

Oh, gosh.

Martha Gershun

And so giving someone the opportunity to avoid or forestall or postpone that pain is, in fact, offering something to them. So, you know, this whole we're going slow for your benefit, I think, is a little bit of a marketing spin on we're going slow because we're a bureaucracy.

Dr. John Lantos

Right. Exactly. Did you hear that? Did you really hear that? We're going slow for your benefit.

Martha Gershun

I heard that retroactively. So I did not hear that. The clinic didn't think they were going slow.

Dr. John Lantos

Right.

Martha Gershun

Or I said, hurry up, hurry up. They were like, this is fast, Martha. So they were denied. Yeah. They didn't think they were going slow at all. But after the fact, and John, some of the people, you know, that you and I have met as we've been on book tour and things have said, you know, we at our clinic, we take our time because we want to be sure. We don't ever want to be accused of rushing you into it. We don't ever want to feel that we pushed you. The time we are taking to evaluate you is for your own benefit. They didn't mean you, me. They meant the whole populace. They meant candidates.

Dr. John Lantos

This is a holdover from the days when transplant programs had serious ethical qualms about accepting any unrelated donor. And we only talk about that a little bit in the book. And there are surveys showing that like in the 1980s, almost no program would take an unrelated donor. And in the 90s, it was up to 10%. And then it got to 40%. And now most programs... But in the old days, the assumption was anybody who would come forward and say, I want to give my kidney to a stranger was mentally ill.

Kent Bressler

Right. We're crazy. Yeah, absolutely.

Dr. John Lantos

And, you know, the first referral was not to a nephrologist. It was to a psychiatrist. And there are a number of papers written from those days about psychiatrists being asked to evaluate these people and determine whether they were sane and insane. There was a whole Canadian task force. uh about this and uh uh so in in a sense that's one of those remnants uh from the old days but even then it was usually a couple weeks or maybe a couple maybe even a couple of months that they'd say you know go home and think about this uh don't make a hasty decision not not nine months

Kent Bressler

one

Dr. John Lantos

years

Kent Bressler

one of the things that always surprises me when i give someone the um site to go to to become a donor register to be a donor they want to do you want to donate to somebody and they i give them that transplant number and the usually it's a breeze application or some type of application so i always call those first all right i don't just give it to i always call them first i call them and i i try to i try to navigate as if i was going to donate and i've even actually filled out uh the registration form to where it got to a point where I had to put it in just to see how many questions I could get through. And the one thing that really stops me in my tracks every time is when I get this and it doesn't go directly to that. I get somebody says, okay, you've reached such and such a number and please leave your information and we'll get back to you within 24 hours. That's a get go right there. That's the start. To me, that's a non-starter right there. There's one step in the process that could be really

Kent Bressler

nationalized. It's different. You call different places. Some people, you got to talk to a person and they fill out the formative. Some do a breeze form. There's always something different. It's not standardized. It's not the same. That's a point that always... sticks in my craw about how long does it take to get started? How long

Martha Gershun

should it take

Kent Bressler

to get started?

Martha Gershun

That resonates with my personal story. In the newspaper article I read, there was a 1-800 number. I called the 1-800 number. A very perfunctory receptionist answered. I thought they were going to put their hand over the cup over the phone and say,

Kent Bressler

we have a donor for Deb.

Martha Gershun

It was... Thank you for calling the Mayo Transplant Clinic. I'm calling to be a directed donor to a woman I read about in the newspaper. She's registered there. Please go to www. and fill out an online form. They didn't ask if I had internet. They didn't ask if I had access to a computer. There's an assumption of a certain amount of privilege and resources. like all forms that had its own problems. I answered yes to some questions that I didn't understand that the lack of nuance was going to throw me into another bucket. But also at the end, when I hit submit, the auto fill, what came back was, thank you very much. If you are a possible match, we will call you within five days. If you do not hear from us within five days, there you

Kent Bressler

go.

Martha Gershun

Like where is the customer service there? And what added cost would be required to have a different auto respond message?

Kent Bressler

Right.

Martha Gershun

Like the world needs kidney donors. Thank you for your altruistic interest. If you are not a match for this donor, we will call and tell you how you can donate for a paired or an exchange kidney.

Kent Bressler

Absolutely.

Martha Gershun

Nothing about that. If I had not been a histocompatibility match for this donor, they were dropping me. Yep. When we know. those of us who've been around the system for a while, that many, many, many kidneys are donated through pairs and exchanges. These guys were single-mindedly, did I match this person? And I have to tell you, when you get a message that says, if we don't need you, you'll never hear from us again,

Kent Bressler

that's really

Martha Gershun

kind of cold.

Kent Bressler

Yeah. But that's not just germane to Mayo. I've had that before. I've seen, yeah. I mean, again, I still... This is personal. I still think there's need to be some standardization here just for just for the hope of the recipient and the hope that we can get more donors available. You know, we should be embracing them instead of pushing them away.

Martha Gershun

None of my concerns or complaints, I think, were clinic specific, as I have met. You know, once you're a donor, then you start to meet other donors. It's like Volkswagen. Yeah. And you join Facebook groups and, you know, you sign up for organizations and the next thing you know, all your friends have been new donors. But when I talked to other donors, that was a pretty standard

Dr. John Lantos

experience.

Martha Gershun

And I will say, you know, to go on on my theme of kind of lousy sales management and lousy customer experience, they didn't, of course, call me in five days. They didn't call me in 10 days. And so I thought, oh, I'm not a match. Go on with my life. find another project. In 15 days, they called and said, you are the rare blood type that will match this recipient. We would like to proceed. And I didn't say, your website said five days, but I kind of think if you're going to make numeric promises, you should keep them. Because if somebody can't count the difference between five days and 15 days, what confidence do I have that they'll get my meds right, that they'll get my blood pressure numbers right? Sort of like what the New York Times says, if you have a small typo, you could have a big problem with facts. You have to be accurate all along the way. And again, it wouldn't be that hard. How about we just call everybody who took the time to fill out the form?

Kent Bressler

And thank them?

Martha Gershun

Thank them. Send them a brochure. Keep their name for the next time you have a B positive recipient. If someone a year later had called and said, I know you weren't a match for Deb, but we have a nine-year-old girl here who needs a kidney. She's not Jewish. She doesn't live anywhere near Kansas City. Are you still interested? Yes. You already have a pool of people who've done something pretty extraordinary. Call the 1-800 number. You could manage that lead bank.

Kent Bressler

Oh, there's no doubt. Again, that's just one point. Several points in here. I wanted to circle back and talk about how difficult difficult it is once you've actually been accepted as a donor that's i think a really that really stuck out in the book to me here you go you uh you're ready to go and i know your your recipient was ready to go she's getting sicker by the day speak to that a little bit maybe maybe dr you could tell me tell me how you when you you read her story actually How did you feel about the degree or the time that it took to get her, get them to the OR?

Dr. John Lantos

Well, it was longer than it needed to be. But it was also, I mean, arranging these things is complicated. I mean, you have to work around the schedule of the donor, the schedule of the recipient, and the schedule of the transplant team. And you have to do that for every aspect of the evaluation and then for the transplant itself.

Dr. John Lantos

So, you know, I think there is a legitimate question. If you were going to look at national standards, what would be the reasonable timeframe? I mean, it probably wouldn't be a week. It wouldn't be nine months. Would it be two months? Would it be three months?

Dr. John Lantos

Martha's story was also complicated because both donor and recipient lived in other cities than where the transplant program was.

Kent Bressler

Sure, absolutely.

Dr. John Lantos

That's not the most common experience with transplants.

Dr. John Lantos

Family members that are often in the same city makes the whole process easier.

Dr. John Lantos

But I think it is a complicated project. That said, there are places that have streamlined the medical and psychological evaluation to get the whole thing done in one day. That would obviously make it easier on the donor, make the whole process more efficient. It can be done. It takes more effort on part of the transplant program.

Kent Bressler

Right.

Dr. John Lantos

And may require them to bend their standards a little bit. Maybe

Kent Bressler

have

Dr. John Lantos

some fewer evaluations. It gets us back to the question of how rigorous you have to be about evaluating the donor's health.

Kent Bressler

That's a whole separate topic, isn't it? You really think about it. It's just a separate topic. As for example, I know a program that I worked with, I was transplanted at. Actually now, if you're on the transplant, they call you in for an evaluation and they encourage you on that initial evaluation to bring your donor with you. If you have a donor, if you have a donor, and that's what we strive at Kidney Solutions is to try to get them out of the office before they go and try to work them to get a donor before they go in for this evaluation, because they'll test those, they'll test those individuals right there on the spot.

Kent Bressler

Works great for family members, yeah, but you have, you know, the janitor's willing to do that. The ward clerk in the hospital is willing to do that. Or someone who works on your car, the mechanic works on your car, says, yeah, I'd love to go with you. I'd like to be tested for you. See, that's a step in the right direction. And it works very well for them. They do a lot of transplants. And they do a lot of paired exchanges. Because they take that individual who's not right off the tip top and says, hey, here's the situation. And they counsel them, talk about it. They mentor them, all right? So that's what we've tried to emulate here at Kennedy's Kidney Solutions is try to get somebody straightforward before they even start the process, get them schooled up, get them a donor, and hopefully then when they go for their evaluation, they're taken with them. Most people don't go right from the doctor's office down for transplant evaluation. It takes time. It may take as much as two, three, maybe four months. Maybe their GFR is not right. Maybe they're not in that hunt yet, but at least they can start and they'll have that. They'll have that caveat with them, maybe a couple of them. This organization only do one, but you can bring that person with you. So that's a really great step.

Kent Bressler

And I'm sure they've talked about this with other programs, but I think it's great. But it's that front end that's most important. Get it started early, not wait until you're, I'll write you down at GFR 10 and you need transplant. Let's go find a donor.

Martha Gershun

Wow. You bring up a great point because I don't know how much of the primary care of nephrology is yet focused on what we would call preemptive transplant, transplant before dialysis. There is not always time. I mean, someone can have an acute kidney injury. Oh, sure. No, no, no. We don't know what's wrong and we operate and you have kidney cancer and you need it now. But most kidney disease takes time to develop. In the case of my cousin, which is part of my story, one of the reasons I was interested in kidney transplantation is I had a family member who received a living kidney donation. She had a family history of PKD.

Kent Bressler

PKD, yes.

Martha Gershun

Her mother died of it. Her brother had died of it. It was knowable from the age of... 30, by the time her mom was diagnosed, that she might well have kidney problems. And I don't know that we do a very good job of saying to people, you're probably going to have kidney problems. You should, who in your life might be that donor? You know, which of your family members when the day comes? I mean, I don't know about you, but I kind of have a mental list of the people that if I'm in a car accident, I can call for my cell phone and they'll be able to help. They're the friends who are good enough and close enough. that they will drop everything and come. I think for people who are clearly headed towards a path of chronic kidney disease and possibly unstable renal disease, those ideas could be percolating.

Kent Bressler

Oh, started real, yeah, percolating way in advance of when they get there.

Martha Gershun

Maybe.

Kent Bressler

PKD is a standard example. People that I've... come to know over the course of 20 years, 30 years, that have PKD in their family.

Kent Bressler

And a lot of men end up on dialysis. I mean, something wrong with that picture. I'm not drawing any conclusions here other than observation that you know you have an illness that's going to pertinent or always result in a transplant. So why are we parading you towards dialysis before you have that transplant?

Martha Gershun

The idea that you get sick, you go on dialysis, and then you get a transplant. I know we're trying to upend that in the nephrology space.

Kent Bressler

The ones that I'm working with, the very few that I'm working with, get it. They're more than happy to work through a mentor to try to get people ready for transplant, not ready for dialysis, ready for transplant. From an ethical standpoint, I don't know the nuances of that. I was so glad to see Dr. Lato show up and talk about ethics because it is an interesting topic, but it's an important topic. It's not a matter of, oh, gee whiz, everybody can just go out and give a kidney. There's a reason behind it. I believe it's God-given. I don't believe we ever find donors. I believe God sends them, but again, the point is... There is an ethnicity about it. You have to have the right stuff to donate a kidney. Signing your driver's license is totally different than saying, yeah, I'm going to go surgery and give my kidney to my brother. Or in your case, you're going to give it to a recipient. Your friend. Or nobody at all, just to get a quote voucher. So, I mean, this is a huge, huge... discussion. And I think everybody really needs to go back. If they're even thinking about listening, they're thinking about being a donor. They need to read your book.

Kent Bressler

All right. They really do. And this is a plug for it because I think it's, it's very important to get all the issues so that you can make a decision saying you want to, it's a lot different saying you will, because we've had want to just back out in a heartbeat. and for no specific reason. And it's usually because they've not been counseled. They've not been told about the process.

Martha Gershun

I'm curious, Kent, do you see donors and donor recipient pairs running into financial obstacles to donation? All the time. It's too much.

Kent Bressler

All the time. All the time. You know, when we started Kidney Solutions, main thrust was, you know, maybe we ought to just, you know, do a lot of fundraising and have money in the bank. to uh help these people and i still see it and we still struggle with donations into kidney solutions to help to help defray costs because when you go global i call it global when you got a patient you live in texas and you got a patient in new york city and that person finds a donor that happens to catch it in california i'd like to i'd like to be able to help them a little bit kind of pick up the whole bill but at least you know what's a room what's a flight

Dr. John Lantos

I mean, you know, there are foundations that take that focus. The National Kidney Registry and what's the other one, Martha?

Martha Gershun

So there's a government organization, the NLDAC, the National Living Donor

Kent Bressler

Association. Right, and we work through them. Yeah,

Martha Gershun

yeah. But, and this will be no surprise to John, my complaints and concerns about that governmental organization, which is that the means test is very, very low. You essentially have to be impoverished. A working class or middle class family did not qualify. And certainly my family did not qualify. And also they means tested based on the recipient, which is very, very strange. Yeah,

Kent Bressler

that never has made sense. But you know what? That's already in the regulations. And those have to be changed.

Martha Gershun

Yeah, there's a problem with that regulation. Um, but generally, you know, back to my early, early point about the money in this process, right? The money we save for every transplant over dialysis, some of that money could obviously be spent to defray costs for living kidney donors.

Martha Gershun

Truly the most absurd thing. So I think. Can't you know this from reading the book? The out-of-pocket expenses for my donation were over $5,000. In addition to that, my husband took 16 days off work. I was retired, so I didn't have to take time off work and we didn't have kids in the house, so there was no childcare. So our $5,000 number was a pretty low number. We had been fully prepared to pay that as part of this... donation, this good deed, as it turned out, my recipient's family did reimburse us for our travel expenses, which was very lovely and very gracious. But if they had not been able to, and we had not been able to, this transplant wouldn't have happened. If I had said to my husband, you're going to have to take a couple of weeks off work to be my caregiver, which is required by the transplant clinic to accompany me to the evaluation, to accompany me for surgery, to hang around a little bit for my early recovery. and we had needed his wages, he was an hourly worker or a gig worker, we needed his wages to support our family, we would have just had to say no.

Kent Bressler

Yeah, or not say anything at all, not

Martha Gershun

even get involved. We wouldn't have been involved. And so you lose a huge, huge pool of donors. You have to not just be altruistic, you have to be well-resourced.

Kent Bressler

If you take a look at the Living Donor Act, HR 1255, which we've been chasing. We, the National Kidney Foundation, American Association of Kidney Patients, the kidney population has been chasing that bill to get that to protect donors against, you know, the shenanigans of insurance companies not giving them coverage or extending coverage and on and on and on. That bill has been squandered around, pushed around, hardly ever gotten out of committee for over 12 years because I've been working on it for that long.

Martha Gershun

What's so tough about that? Where's the controversy?

Kent Bressler

Well, the controversy is that federal government, the people that want to do it and the federal government don't want it. They want it at a state level. So we went back in tech and got a lot of programs at the state level. But then again, some states don't have it. The executive order helped. But I'm just saying there's got to be some type of movement that helps donors. because there's just too many people dying. 12 a day die waiting on a kidney, all right? 12 people die waiting on a kidney. So- I think

Dr. John Lantos

part of this goes back to the whole debate about whether you could pay donors and whether we should have markets in kidneys and the fine line between reimbursement for expenses and-

Kent Bressler

Allocating funds or paying for

Dr. John Lantos

donors? Paying donors.

Dr. John Lantos

you know, the more you throw into the pot, okay, travel expenses, childcare, pet care, stays in hotels, lifetime medical insurance, you know, you can go on and on. Eventually, it becomes something that looks like paying donors. And I think the government in particular wants to stay out of that. Private

Kent Bressler

foundations

Dr. John Lantos

are much more likely to step in. And then you get all the problems with finding the private foundation and a patchwork quilt of different foundations with different criteria and different priority areas.

Kent Bressler

That was one of the questions that I was going to end with, was when do we entertain the debate on paying for donors? Oh, I think it's entertained

Dr. John Lantos

as a debate.

Kent Bressler

exactly entertain at least talking about it

Dr. John Lantos

or you know everybody's talking about

Kent Bressler

nobody

Dr. John Lantos

yeah

Kent Bressler

but this just the sheer point that you know like on the on the deceased side of donation you sign you're opting in or opting out there's always got to be a caveat there's always got to be a sticking point to make it to make it work and i guess i guess i'm just getting old but i look back at all things that happened in my life since i i've had kidney disease It ain't move very fast. I'm 72 years old, right? And I'm talking to some people now in their 20s and 30s, some children also, they don't see getting out of it. It's expensive, right? So somewhere we got to blend it. I don't know how we do that. I guess I just... I'd rather just throw in questions and see if somebody come up with an answer. But I do have my feelings. And I think that debate needs to be had. All right? And I'm sure there's plenty of ways to, quote, skin the cat. Because there's plenty of people dying every day waiting on a kidney. And that's what I don't like.

Martha Gershun

You tee it up really importantly, Ken. 12 people a day dying. There are... Good people who would like to do this both altruistically and to save the lives of family and friends. Every kidney transplant saves money. This is a win, win, win, win, win, win. If we figure it out.

Kent Bressler

Exactly.

Martha Gershun

A little sticky around the figure it out thing. But if we can inch our way towards solutions, we'll save lives and we'll save money.

Kent Bressler

And you just, you hit it right on the head. It's just a matter of. I just don't have any more to say. There's so much to say, you can't say anymore. You know what I'm saying? You could debate this all day long and then say, let's take a break and we'll come back tomorrow. We don't have that opportunity, but I would love to have a panel discussion like this about what are we gonna do about finding donors? We don't have to look for recipients. We need to find donors, right?

Dr. John Lantos

And again, to highlight why I think there's some of this inertia, stasis, lack of progress. I mean, I think there is a central tension in all of this between the sort of enthusiasm the two of you have. Everybody should be a donor. People are waiting to sign up. It's all these bureaucratic barriers that stand in their way. Versus concerns about coercing people. Yeah. That's the question about markets for kidneys. Would it end up being something that only poor, desperate people would do for the money? It's also the concern about transplant programs and them setting up these screening programs, which in their view are designed to protect you. And the alternative, if you think about it, transplant programs that were sort of... giving you a hard sell about, you know, hey, be a donor. We'll pay for your hotel. We'll fly you up on a private jet. I think at a certain point that could get a little icky, too.

Kent Bressler

Oh, sure. Absolutely. Absolutely.

Dr. John Lantos

They were trying too hard to get people who were a little reticent to sign up. So, I mean, I think there is a real tension. It's not...

Kent Bressler

Oh, I don't disagree at all. It's not simply

Dr. John Lantos

inertia.

Kent Bressler

But it's a matter of... Losing focus on where you want to go. We haven't lost that focus. And I think that's the most important thing. Our most important thing is finding donors. I don't know how we do that. I have consequential thoughts, but I don't have any doubt in my mind that this is not going to get better. It's going to get worse as far as people going on that list. There's lots of things that

Kent Bressler

come into play. One of the most interesting thing is that The emails through my website at kidneysolutions.org, I get emails nearly every day, sometimes more than one or two. I want to sell my kidney. Well, I already automatically know who that's coming from. It's coming from Bangladesh or from India or from Singapore. Not necessarily. Yeah, but I've never had one from the States here. I've had people ask if there's help in assistance in covering if I do that. but to say, I've got my kidney for sale. And I suspect it does happen, but in my case, it's not. But it's mostly foreign inquiries about, can I get Avisa to come in and sell my kidney? So that's another, that's just one of very many, many different issues in this whole discussion. I'm glad we have it. I hope people pick up on this. And I hope that when you get back and listen to it, that you use it, spread it around. If it's been beneficial, people will pick up on it. I give you a chance now to

Kent Bressler

say our last diatribe. If you have any points that you'd like, just personally, each and one of you to say, I would really like to hear them right now. Because this has been a very good, I had a good feeling here. this is going to go somewhere.

Dr. John Lantos

Mine is quick. I mean, if people really are interested in becoming a donor, just type, I want to be a kidney donor into a search engine and you'll get plenty of hits on

Martha Gershun

who

Dr. John Lantos

to call and how to do that. It's not hard to find

Dr. John Lantos

a place that would welcome you, evaluate you, and match you with a potential recipient if you're motivated to donate a kidney.

Kent Bressler

How about you, Martha?

Martha Gershun

What I always want to leave people with are two thoughts. One, donating a kidney really was the most meaningful experience of my life other than having my own children. It was inspiring. It made me feel good. It was exciting. And I would hope for that opportunity for anyone else who has the resources and the time and the interest. but it was too hard to do. And I would like to see us remove those barriers, smooth the obstacles, because it's one thing to do it as a volunteer, like I did as a project, and it's quite another if you're trying to save the life of a spouse or a parent or a child. And we owe it to those potential donors and to their recipients to make this process easier so that more people have the opportunity to save a life.

Kent Bressler

Can we say amen?

Martha Gershun

Amen.

Kent Bressler

Amen. Amen. Okay, folks. And if you're listening to this and you would like to share it, please do. And most of all, get a hold of us at KidneySolutions.org. My phone number's on there and all my volunteers can be reached. Anybody who's interested in donating, we're ready to help you. And all of our services are free. I want to make that perfectly clear. You'll never receive a bill for any services provided by Kidney

Dr. John Lantos

Solutions.

Kent Bressler

I want to thank my guests and new friends, Dr. Landers and Martha Gerson. I really appreciate you coming on. And if we circle back again, I know I'll get, yeah, let's do this. Maybe we can go specifically into a few things and be more succinct and But I really do appreciate it. Matter of fact, I love you. Thank you so much.

Martha Gershun

Okay. It's an honor to be

Kent Bressler

here. All right, folks. Listen, you know where we're at. A lot of people calling, a lot of people texting. We love you all out there. Do me one favor.

Martha Gershun

Keep breathing.