Let's Talk Transplant
"Welcome to Let’s Talk Transplant, the podcast that explores the extraordinary world of organ transplantation with hope, humor, and inspiration. Hosted by Mike Lollo, a former NYPD detective and altruistic kidney donor, this show dives deep into the science, stories, and groundbreaking advancements in organ donation. Whether it's living or deceased organ donation, no topic is off-limits. With engaging guests and eye-opening discussions, Let’s Talk Transplant will change the way you see this incredible field—one story at a time. Like, follow, and join us on this fascinating journey to discover the power of giving life."
Let's Talk Transplant
Kevin Longino's Journey: From Transplant Recipient to Kidney Health Advocate
Kevin Longino's journey from kidney transplant recipient to CEO of the National Kidney Foundation is nothing short of inspirational. Battling a rare kidney disease, Kevin found hope and guidance through the NKF, ultimately transforming his personal struggle into a mission to support others. Join us as we explore the crucial work being done under Kevin's leadership to enhance early detection, expand organ donation, and improve policies for millions affected by kidney disease.
The episode also tackles the critical issue of post-transplant medication access. Hear about the challenges faced by transplant recipients who must choose between essential medications and basic living expenses, risking a return to dialysis. Discover the advocacy efforts behind the Immunosuppression Bill and how engaging with lawmakers like Congressman Jim Himes sparked change. Through Kevin's lens, we discuss the NKF's tireless dedication to ensuring life-saving drugs are accessible, shaping a future where healthcare policy serves those in need.
Welcome to the very first episode of let's Talk Transplant. Before I get into announcing who my guest is for today, I just want to take a brief moment to thank two very special people, because without them, I would not be on the air right now. They are actual donors. They're both living donors, but they also donated because they felt that a podcast like this was necessary. And they heard my previous podcast when I was over at the National Kidney Registry and after I left there they wanted me to continue and they graciously have given me the funding to do six episodes. So I'm truly grateful. They know who they are and I just wanted to say thank you.
Speaker 1:Well, I am super excited to introduce my very first guest on the very first episode of let's Talk Transplant, and his name is Kevin Longino. A fellow Italian, he's the CEO of the National Kidney Foundation, also known as the NKF, the largest, most comprehensive and longstanding organization dedicated to the awareness, prevention and treatment of kidney disease. As a kidney transplant recipient himself, kevin brings a deeply personal connection to NKF's mission, advocating tirelessly for the 37 million Americans living with kidney disease and the millions more at risk living with kidney disease and the millions more at risk. Under his leadership, ncaf has championed groundbreaking initiatives, from improving early detection and access to care to advancing policies that expand organ donation and transplantation. Kevin's unique perspective and relentless passion have positioned him as a leading voice in improving kidney health and saving lives. And Kevin Longino, welcome to let's Talk Transplant. How do you feel being the first guest on this podcast?
Speaker 2:You know, Mike, I am deeply honored to be the first guest on what I hope to be a fantastic, successful podcast that talks about transplant and talks about the need for it and the blessing of it and how it can immediately start saving more lives.
Speaker 1:Thank you. I really couldn't think of a better person, because we're going to go into in a few minutes about what the National Kidney Foundation is and what it does. But you know, the reach of the National Kidney Foundation is just so vast that I, you know, I thought it was crucial and, of course, this podcast is not always going to be about kidneys. I'm a kidney donor, your kidney recipient but my goal is to talk about all things transplant and ultimately, what I want to do is create awareness. I want to inform people and I hope that more people receive transplants. So, you know, I did mention that you are a kidney recipient and, if you don't mind, I'd love for you to share a little bit about your, your story and and what happened and how you found out about it and how you got the kidney and all that good stuff, and then we can get into the National Kidney Foundation.
Speaker 2:Yeah, sure, um, uh, I'm happy to talk about that. So my story, um, is unique and I'll explain why in a second. But uh, but I I was. I found out that I had kidney disease because I went into my primary care position with just headaches that were just unbearable and they didn't make going on for two or three weeks and and uh, no amount of a leave and aspirin would really make them go away. And so I went to see him and my blood pressure was just off the charts, it was. It was I don't remember the exact numbers, but it was high, 160s, high 120s, and I was actually too young to have numbers like that.
Speaker 2:He went through kind of the normal things around what's going on with your diet? Of course it was bad. What's going on with the stress in your life? Of course I had a lot. I was working in the computer industry it was the real rock and roll period of the computer industry and working, you know, 14, 12, 14 hour days. And so he almost brushed it off to just bad diet and in stress. But he turned right as he was walking out of the room.
Speaker 2:He turned back and looked at me and said do you have a history of kidney disease in your family. I said, well, matter of fact, I do. My grandfather died of kidney failure. And he said when was that? And I said, well, I think he was 41 years old, it was 1953. My mom was a teenager and he said well, how old are you? And I said 39. He said, oh wow, we need to get you to a nephrologist. And so from there I went to a nephrologist and had a biopsy, found out that I had an inherent genetic kidney disease, called focal segmental glomerulosclerosis, or FSGS for short. And from there, you know, was was quite shocked, quite taken aback, that to me I had just gotten a death sentence. I was going to die young, just like my grandfather had died, and it was pretty startling.
Speaker 2:But my nephrologist, when I went into his office, there were all these brochures on the wall and on the counter that talked about National Kidney Foundation, talked about kidney transplant doctor, what kidney disease? Talked about kidney dialysis. And when I went in and got the diagnosis, the the position kind of walked me through what my choices were, what a plan might look like, and he said your kidneys are gonna fail. Probably in six months you're gonna need to go on dialysis if you do everything I tell you to do, we can probably stretch that out to a year, but you've got to get ready. And he handed me some more brochures from National Kidney Foundation and I went home and kind of put them all out on the kitchen table and tried to kind of get a grip on what was how my life was drastically about to change and I realized that the National Kidney Foundation had really mapped out this whole thing and knew exactly what I needed at the time.
Speaker 2:Upon reflection, what I realized later was that I had never heard of the National Kidney Foundation, but they had already heard of me. They already knew what I needed in that moment to deal with that diagnosis, to get ready for dialysis, to get ready to be transplant worthy. Deal with that diagnosis, to get ready for dialysis, to get ready to be transplant worthy. So when I kind of got on the other side of this and eventually got my transplant, I believed I really owed the universe, I owed people a payback and I was so grateful for the National Kidney Foundation I started getting involved as a volunteer with them.
Speaker 1:so grateful for the National Kidney Foundation, I started getting involved as a volunteer with them. Wow. So you mentioned, obviously, that you received the transplant. How did that come about? Was it from a deceased donor? A living donor? Have you only had one?
Speaker 2:transplant. I've only had one transplant, so that was well over 20 years ago. I was able to postpone dialysis for about three years and I kind of hovered above the cutoff for about three years and I got waitlisted, and formally waitlisted. I was never part of the allocation because my kidney function was hovering around 20, around a GFR of 120, which we'll probably explain what that means at this podcast or some future podcast. I'm 20, which will probably explain what that means at this podcast or some future podcast but I didn't really make the threshold to go on the allocation for a long time and what I found out was that years later, when I got involved with the National Kidney Foundation, was that my physician was managing me according to the guidelines that published by the National Kidney Foundation of how to postpone and how to manage kidney disease. So another NKF blessing in disguise. But once I was able to, once my kidneys failed to the point where I needed to go on dialysis, I was properly waitlisted and it was quite a short journey.
Speaker 2:I mean not a lot of people know this I wasn't on the waitlist very long. I was only on for about three months. Wow, you lived in Texas at the time. I lived in Texas. Yeah, I was in Texas, and the reason I got it so quickly was not because of anything I did At the time.
Speaker 2:The algorithm, the matching algorithm said that if you had a perfect match, it was such a rarity that that person went to the top of the wait list and they didn't, and so that's what happened to me. I had a kidney become available that was such a perfect match. This person was a genetic sibling to me and I got the kidney very quickly. And so, again, you know there were 82,000 people in the wait wait list then. So to go to the top of that list is not is not just one out of 82 000, but it's even more genetically rare to be that that close to someone, um, without them being in the same family so, if you don't mind me asking if it's's not too personal um, have you, did you ever want to meet the family, or have you, or is that not something that you, uh desired?
Speaker 2:Well, I did write him. I did write him a letter. You know, in our system, in the transplant system, that people are unaware um, donors and recipients can communicate with each other anonymously through the OPO. Donors and recipients can communicate with each other anonymously through the OPO. Um, but it but it's anonymous, and if you never hear back, you never hear back, and I never heard back from the family.
Speaker 2:So what do you think about that? I don't know what to think about that. I'm so, I'm so mixed about it. Um, you know, um, I I made a promise to that family that I would honor it and I would honor the gift and, and I think you've done that, I hope I've done that I'm still going to do that. Sure, I'm still getting up every day trying to honor that gift because I recognize how rare it was. In fact, the whole scenario is rare. You know, kidney disease, kidney failure, is vastly underdiagnosed. In this country, 90% of people walking around the U SS with kidney disease haven't been diagnosed. You know that equals about 34 million adults. Most people find out they're in kidney failure by finding out in the emergency room and it's too late. Their kidneys already failed. There's nothing they can do. So the whole scenario, end to end, is is unique and I'm so grateful for that that I feel compelled to work at the National Kidney Foundation as a volunteer and now as staff, to change this.
Speaker 1:That's what kind of drew me to you for full disclosure for people who are listening. I've known you now for several years, since my kidney donation. We've even had dinner together a couple of times and I've just been so moved by your sincerity, your generosity, obviously passion, and it's very unusual. You know, the National Kidney Foundation is a very large nonprofit but it's a very large institution and it was, it's just so refreshing to see a CEO of that with your type of temperament and your personality. So I, you know, I applaud what you, what you have done and what you are going to continue to do. But that probably is a good segue into how the heck did some you know kidney recipient volunteer and then become the CEO of the National Kidney Foundation? Was there like a lottery or did you, you know, was it the right day at the right time? How did that happen?
Speaker 2:Well, you know I got. I got involved. I think it was luck and opportunity. I got involved locally with the New York office of the National Kidney Foundation, just doing local volunteer work, you know, helping out with the walk, which is a big fundraiser and community event that National Kidney Foundation holds around the country. I met a lot of interesting people and because I did home dialysis I actually didn't know a lot of kidney patients until I started going to these walks and started meeting people. But because it was in New York, I met a lot of the national board members for the National Kidney Foundation who are volunteers and I kept pressuring them to get more involved, to get more active. I just felt like I had more to offer. And the next step, after helping out with local fundraisers, was I got involved in advocacy and I really wanted, I really believed there was more to be done at an advocacy level and I've continued that as CEO, but at the time as a volunteer, I just thought there was a lot that could be done.
Speaker 2:The NCAF was really pushing a bill then called the Immunosuppression Bill. That's not the formal name of it, but the idea was really important and it had to do with immunosuppression, drugs benefit from Medicare, and I really kind of locked around this idea. I thought it was ludicrous, quite frankly, that this situation existed. And the situation was this that the government, for a lot of reasons, is the primary payer for kidney disease and therefore, and kidney failure in particular, and therefore, once they pay for the transplant, and they would pay for the immunosuppression drugs which everyone needs after they get a transplant for about three years, and after three years they would just stop the benefit. After three years they would just stop the benefit. And you had all these people that went through all this to get a kidney and yet they were suddenly having to choose between paying their rent, paying their groceries and paying for their drugs. And a lot of people would make shortcuts because they had to and suddenly their kidneys would go into kidney failure and they'd be back on the wait list and they'd be back in dialysis and it was just so unnecessary and so we wanted to create a benefit that would, that would extend that throughout their life, as long as they didn't have insurance some other way.
Speaker 2:And and so I I had the team and in calf, the formal staff teach me how to make a pitch, you know, to a congressman and I was. I was also supportive of our had an incoming congressman here in Connecticut named Jim Himes, and I spoke to him about this bill and and asked him to be a co-sponsor of this bill. And when I told him the situation, you know he he's like everyone he didn't believe it really existed. You know that why would we do something that ridiculous, you know. And and so we I got him to be a sponsor of the bill and I kind of got the bug for advocacy, wow. So I think I think I've gotten a little off track here with your question, so that's okay.
Speaker 1:So you know. What you were saying, though, is is you know it resonates, because it was mind blowing to me that you have these donors who you know upon death, you know give this gift of life, and you have living donors who give this gift while they're living, and then the government was cutting off the medication that enables that gift to last, hopefully, 10, 15, 20 or more years. That just doesn't make any sense.
Speaker 2:It didn't. It didn't, but I got the bug and I was able to get a co-sponsor quickly from Congressman Himes, who still continues to be a fantastic supporter of NCAF. But I got the attention of some national board members, which is to kind of answer your question how did I get in this role? And I was subsequently invited to be a national board member and again I kept asking for opportunities to be an active and proactive volunteer and from that I got more projects as board members, to be the board sponsor of several internal projects, got on the executive committee and then in March of 2015, the CEO left of National Kidney Foundation and I was working for myself as an independent consultant to start up tech companies and investor and I raised my hand again and said I'll be the interim until we find someone full time.
Speaker 2:So are you still the interim? I'm still the interim. I was the interim for about six months and we did a national search and eventually the board liked what I had, what I was doing, and asked me to stick around. So that will be 10 years in March when all that went down. So Congratulations, that's great, thank you.
Speaker 1:So you know we talked in pieces about what the National Kidney Foundation does. You know you described what it did for you, but can you, you know, in a nutshell, kind of tell the people who are listening what is the National Kidney Foundation and what's its mission? Why does it exist?
Speaker 2:Sure, Well, I think in the intro you did a good job kind of giving a um, essentially a border plate.
Speaker 2:You know where the largest organization focused on uh, the awareness, prevention, uh and treatment of kidney disease. I think that's a, you know, that's a fact. I think that a lot of people don't really know what that means. So, uh, what what? I think that's a fact. I think that a lot of people don't really know what that means. So what I think what we're trying to do essentially is three things we're trying to eliminate preventable kidney disease and kidney failure in particular and over 60% of kidney failure is preventable and if it's diagnosed early, if it's treated early, we're trying to get to the point where there's essentially no wait list anymore and that dialysis is a temporary treatment, not a lifestyle, and that you know there's a lot of ways to say that it's, you know, in the wait list. But you know, as we all know, as we all should know, there's about 92,000 people on the wait list, but there's over half a million people on dialysis and there's about 800,000 people in total that are in later stage kidney failure. Right.
Speaker 1:So you know you talked about that with your own situation. That you're. You know that's the thing we have people like. Well, how could there be so many people on dialysis but there's only 92,000 plus on the list? It's because their number is not where it needs to be for them to be listed. But those people could surely benefit from a kidney transplant.
Speaker 2:Absolutely. A kidney transplant right now is the best treatment for kidney failure by far, in every measure.
Speaker 1:Right, and I think I interrupted you. So what was number three in every?
Speaker 2:measure right and, I think, interrupted. So what was number three? You said the three things. That number three is essentially I alluded to it in dialysis. We think dialysis should be temporary, but we also think it should be a life, a conducive of a productive lifestyle. I mean, right now there's high rates of depression, there's high rates of unemployment, there's high risk of comorbidity if you're on dialysis. Right now there are certain cancer diagnosis that are actually have a better mortality than dialysis, and so you know, we think that paradigm needs to change. I hate to use the word paradigm, but that's the best word I have right now, but that has to change. So in a nutshell, we want to. We want to eliminate preventable kidney disease, kidney failure everybody that wants a kidney should get a kidney and we want dialysis to be a productive treatment that's conducive to a productive lifestyle. So we have a lot of ways that we're trying to affect that and make that happen.
Speaker 1:So that's a perfect segue into the awareness and protection segment that I wanted to talk about. So you know, kidney disease has been labeled as the silent killer and you know, what do you see as the biggest challenges in raising awareness about early detection?
Speaker 2:I think there's several. One is that we did a survey, probably. One is that we did a survey probably 12 years ago now, and about 70% of the adult population in the US don't know what kidneys are. They don't know where they are, they don't know how many they have and they don't know what they do. In fact they don't even know that kidneys and urine are related. They don't know that kidneys produce urine. So you've got a fundamental consumer patient population that don't know the value of kidneys and how it fits, and much like they know what cholesterol does. You know what. They know what heart does and what blood pressure. They kind of know the basics. But that's a big burden and it's very, very expensive to teach the American public. You know it's hundreds of millions of dollars to teach the American public about basic health that we don't have, unfortunately.
Speaker 1:Yeah, so how do we so? That's a great point because I talk about that, I've I've talked about that with living, you know, kidney donation to really it's good. It takes money right To put out the essays and stuff, so so how do you? So what do you do about that? Like you know, all the government people are listening to this. We need hundreds of millions of dollars, right.
Speaker 2:Yeah, yeah, we do. We are talking to the government about that. We've had some good discussions about how to address that with CDC. But of course, you know, funding is a big issue. It's a federal government right now. It has been for the last eight years, but I'm hopeful, I remain positive and hopeful. Eight years, but I'm hopeful, I remain positive and hopeful.
Speaker 2:I think the second thing we can do is recognize that there is an underdiagnosis problem. I mentioned it earlier. There's estimated 37 million adults in the United States that have kidney disease, that have it, and 90% haven't been diagnosed. And we have proven this time and time again by looking at data sets from hospital systems or primary care practices or even payers looking at payers and we can see from the electronic medical records that the two biomarkers of kidney disease are present, there's an issue present, and yet there's no corresponding diagnostic code and there's no corresponding treatment. So we know this at a macro level and we know this at kind of a systems practice level that this is just misdiagnosed.
Speaker 2:So what we want to do is change the system.
Speaker 2:We want to change the system for how primary care prioritizes kidney disease, how they recognize it in practice, how they restructure the reimbursement system for it, and we've taken several approaches around that, where primary care providers, as we may have known they're very overworked and so what we have to do is figure out how to change their workflow. So one of the things that we've done to address it is we've created quality measures, and all primary care practices not all, but for the most part, a large majority of them compete based on based on quality measures. So we've invented quality measures for that. Particularly for diabetics, people that are dealing with type one, type two diabetes there's quality measures that require that their kidneys be looked at, given that's the number one reason for kidney failure, and we're expanding the quality measures to include hypertension, which is the number two reason. So systems behave on measures and metrics. So if you want to change the behavior, change the metric. So we're doing other things too, but that's kind of a highlight of one of the things we're doing.
Speaker 1:So it's commonly known to myself and probably other people who are involved in transplant, but there are some vast health disparities, especially, you know, within the minority community, people of color, and so how does the NKF, you know, approach that and what are you guys doing to help try, and you know, fix that problem, because it's very clear and prevalent?
Speaker 2:clear and prevalent, and so I'm glad you brought that up. Unfortunately, black Americans are three to four times more likely to have kidney disease, kidney failure, followed by Hispanic and followed by indigenous Americans and Asian to some degree, and a lot of this is due to social determinants of health. It's due to lack of access to care, it's due to diet, but it's also due to, you know, genetic propensity for kidney failure, and so what we're trying to do to really address this, if we think about awareness, is to do ground-level, grassroots work in those communities, and so that's we're kind of. You know, we have offices all over the country, and so we're doing a lot of different strategies to really get in those communities and talk to those people in a one-on-one level at the group level about what their risk is and that they are at high risk and that they should get screened. We're doing a lot of work around translation so we can speak to people in their language. We're doing a lot of work in social media, where we have a test called Minute for your Kidneys, and you can go to minuteforyourkidneysorg and go through a quiz and it'll tell you at what level your risk might be and then, if you are at high risk. It'll give you the questions that go take to a primary care physician and say I want to be tested and here's why. And we've had wow, hundreds of thousands of people that we've captured their email address and we are now doing the follow-up to see what the outcomes were on that.
Speaker 2:But we're also working a lot of these system change ideas that I alluded to earlier when I say get into the primary care and change how they operate. We're really working a lot with federally qualified healthcare organizations which are dealing with communities, poorer communities. Family medical centers are kind of the general term, how they're referred to in the community. But we're working with federally qualified health organizations to really help them, give them the right tools and the right practices and the right education. We've even developed ongoing accredited and non-accredited medical education for community health workers so they can, as they maintain their certifications, they learn about kidneys and they learn about how to treat them, they learn about how to spot the diagnosis and things like that. So it's a very comprehensive model of what we're trying to do and we actually have it branded. It's called CKD Intercept and it means chronic kidney disease intercept, or we're trying to intercept early so we can postpone or prevent people from ever going to kidney failure in the first place.
Speaker 1:So do you have some like big whiteboard or map or something on the wall in your office that you can keep track of the thousands, probably, of initiatives that the NKF is doing? Because I can barely remember like the four or five things that my wife asked me to do, especially gets home.
Speaker 2:I know I literally do. I have a 12-foot whiteboard in my office.
Speaker 1:Look at that, and I haven't even been to your office. I was just taking a wild guess, yeah, yeah, I want to talk to you quickly about some innovation, because the NKF has championed lots of innovation for kidney care, so is there anything exciting that you guys are working on now that pertains to advancements?
Speaker 2:Yeah, there's a lot. There's a lot of things we're working on that pertain to advancement.
Speaker 1:Don't go through all of them because I'm going to lose all my listeners on this episode.
Speaker 2:All right, Well you know cool ones, Thanks. So I think a really cool one you'd like to hear about is the work we're doing around xenotransplantation, and one of the roles that NCAF can play is a neutral convener. We can get the medical community, the regulatory community, the patient community and the physician community together and take on controversial topics.
Speaker 1:Like the Switzerland of the kidney community.
Speaker 2:That's our goal, that's what we want to do. A couple of years ago we recognized that, based on the inertia that we could see in talking to all the companies and medical centers that were interested in xenotransplantation, was that they had a lot of common problems but because of the nature of that space they weren't really talking. And so we worked with pulling that community together and we brought in the FDA, we brought in medical ethicists, we brought in the current transplant regulatory groups and all the folks that I just mentioned to talk about what a clinical trial for Zeno really need to look like, what are the conditions and what are the requirements and what are the regulatory hurdles we need to overcome. And we put together and published a strategy out of that. And the scientific part of that work then was picked up by the American Society of Transplantation and they said we'll take this on. This is a great thing. And so we're now a secondary partner in the work they're doing.
Speaker 2:But from the patient perspective, we followed up with an event with the FDA last November and it's called a patient-focused drug development event and this is a very common practice with the FDA to get patients in front of them to talk about the situation, talk about the opportunity to talk about what the patient needs are and, of course, we're a patient organization so we want the patient to be the center of everything and we've definitely wanted to be the center of all of these exciting things that are happening in Zeno. Of course the FDA comes. You don't know what they're thinking, but they sit in the back of the room and they take copious notes and we ran this process for a full day. We had people online, we had voting, but it really kind of gave the FDA a sense of how different kinds of patients that were on different parts of their kidney journey were really evaluating and thinking about the risk of a new technology like this and how they were going to compare it to waiting for a deceased donor or waiting for a living donor or some of the other ideas that are out there.
Speaker 2:There's a lot of other innovations that are out there that I'll talk about in a second, but we just actually just published the findings of that study about a month ago. We've gotten a lot of press pickup on it, but a lot of this we've been told that a lot of the work that we did in this patient-focused drug development thing with the FDA, went a long way to getting the FDA to approve the compassionate use clause, and the compassionate use clause is how we've had three Xeno transplantations since then, and if your listeners don't know what I mean by Xeno, I should have explained earlier, sorry. Xeno is essentially using a pig kidney that's been genetically grown or genetically modified to look like a human kidney in the to the human body.
Speaker 1:And the compassionate use clause is where a patient has pretty much exhausted all we'll say modern day medical procedures and you know, and medicines and things like that, and at this point the government allows them, as a living person, to basically donate their body to be used for this purpose, like the most recent one. You know Dr Montgomery was so excited, you know performing that procedure, and you know the woman walked out of the hospital with a pig kidney. So that's not something any person who needs a kidney can do. You have to be at a certain point, sadly, where this compassionate use clause comes into effect and a point for it.
Speaker 2:Yeah, it's very common in cancer treatments and other very serious illnesses. Now it doesn't mean the clinical trial for Zeno has started yet, but it does mean we're getting a lot of information that's going to help us inform what that looks like, and it also means we probably pulled the clinical trial forward by years by being able to do these things. So this is all very exciting to me because of what we've talked about before.
Speaker 1:The wait list is such a problem but you know I, I would uh be remiss if I didn't say this is not going to happen in like a year or two or three. So you know, we have to keep doing what we're doing until this, you know, hopefully is the is the answer, which could be, you know, 15 years down the road, something in innovation. You know, as a donor, you know you said we talked about a few times that, you know, really, nkf is a patient-centered, primarily patient-centered. So my own personal experience, when I first donated, when I donated I don't first when I donated my kidney, uh, you know, I wanted to do more and I wanted to to be like a mentor and things like that.
Speaker 1:And you guys uh had and still have, um, this peer to peer, you know mentoring group. But for full disclosure, um, it it wasn't really that great. Uh, back in the day when I donated, uh was, you know, I attempted to join the group there was like a it really wasn't a great communication. But now you have, you know, these two amazing people who are running that organization and you've also partnered with the National Kidney Registry to, you know, kind of facilitate the registration of these donors. So can you explain a little bit about that, because the program now, as it is today, in my opinion, is really, really good, and it is, you know, I'd like to see the National Kidney Foundation, you know, do more on the living donor front. It's not that I'm putting you on the spot now, but you know, can you talk a little bit about the Donor Connect program with a peer-to-peer mentoring program?
Speaker 2:Oh yeah, I'd love to Thanks for bringing it up and I'm sorry it was bumpy for you at first, but we have done a lot of work to make that a more effective and effective program, For sure. What we do is there's a lot of people that are interested in being a living donor, that really don't have a person in mind, they just believe this is something they've heard a good story about. They don't know the person, but they believe I'm healthy, I have a kidney, I don't, I can, I can help somebody, I can save a life. And they step forward and you know we refer to them commonly as altruistic donors or non-directed donors. It's kind of the industry term, Right.
Speaker 2:What the National Kidney Foundation does is work with. We have huge traffic on our website around all things kidney, but particularly around transplantation, and a lot of people come to our site through Google search and other ways to find other ways that we're promoting to learn about living donation. And once they decide they want to be a living donor, we push them over to National Kidney Registry to go through the formality of registering and it's you know, it's a questionnaire about family history and once they pass all of those requirements that they're, yes, they could be a kidney donor, then they have to do some lab work that NCR recognizes and takes care of and then once they pass that hurdle, then they go be referred to a transplant center of their choice or one that's local. And one of the things that we noticed in discussion with NKR was number one we could drive a lot of volume to their site. And number two, we noticed a lot of people would fall out of the process. They would fall out during the questionnaire period or they would fall out after they'd fill out the questionnaire but they wouldn't reply to any of the questions for lab work. But they did the lab work. So basically, you've got this huge funnel and we're looking at all the failure points in the funnel and we're trying to improve the conversion rate, if you will, at each one of those, at each one of those sites.
Speaker 2:So we've been very active with NKR and when someone falls out, NKR lets us know they fell out.
Speaker 2:We do personal outreach to that person to see if they want to talk to a person. We're very anonymous and we're very thoughtful about this, but we're a safe place to talk about this and we work with that person to address their issues and then we, if they, if we resolve their issue, they go back in the system. They fall out again. We talk to them again, but we essentially counsel them and become the safe place to help move them through that funnel to ultimately become a living donor. And since we and we track every bit of data around this and so and so what we've been able to do since the, since we started this program I guess we started it formally about two years ago now and we're we're up to almost 200 people that have made it through this, the, to become a living, an altruistic living donor. The great thing about altruistic living donors is they start a kidney chain and, if you know, kidney change arts, where multiple people end up getting a transplant because of one person coming forward.
Speaker 1:So, prior to joining forces, if you will, or partnering with the National Kidney Registry, you did have a peer-to-peer mentoring program and I'm assuming it did not have the same results as once you started partnering with the National Kidney Registry, because what they do really well you know, garrett Hill is the founder and CEO of the National Kidney Registry. What he's figured out is this intake process is really refined and because you guys, so you guys have the traffic really refined and because you guys, so you guys have the traffic, they have the intake process and those two things combined. And you know you mentioned now over 200 donors have donated. So, just so people can understand what that means, that means you know, thousands upon thousands of people have gone to the National Kidney Foundation's website and the National Kidney Foundation has these mentors we like to call them or peers and they walk the people through the process. They're there to help them, hold their hand, be like a safe place.
Speaker 1:So one could argue, you know, would those people have donated if they didn't have a mentor, if they didn't go through the process? Maybe, but not to that number. So you know you are making a tangible effect on. You know it's not enough, right? We need to do more, right? Because 200 is you have people like what do you mean? It's not enough. 200's great, but we just said that it was over 92,000 people that need a kidney. So just one thing, because this comes up a lot on you know message boards and things. So, as the CEO, you had to make this decision to partner with the National Kidney Registry, which is affiliated with approximately 100 to 103 transplant centers, but there's really 250 or so transplant centers in the United States. So how did that you know? How did that go through your mind? Because there are people who you know we'll still work with them.
Speaker 2:We lose the ability to track what happened, though you know once.
Speaker 1:And that's the key to success, and that tracking is the key.
Speaker 2:That tracking is the key. We still do that work and we track that separately. How many people do we talk to? And we do the best we can to do the follow-up, but oftentimes you really need to be scientific about it. You need some kind of confirmation from the transplant center. This thing actually happened and that's difficult. But we continue to offer the mentoring program to people that are just considering it, whether they know anybody or they don't know anybody.
Speaker 2:And I think if you know someone, one of your loved ones or friends or family has come to you and said I want to be a donor. It's a very difficult conversation if you're just thinking about it or if you've really gone out of limit and said, yes, I'll do it. Now you want to change your mind. Now you have concerns. We're that safe place where you can come work on that. You can talk to one of our mentors and really work those things out.
Speaker 2:We track all those calls and those conversations, but it's really hard to track the outcome. But we do all that. So that's the first part of your question is how do I think about it? It's like wherever we can help, we want to help. Wherever we can help, we will help. At the same time there's Donate Life America, who has the registry for all the deceased donor they manage that registry, has been doing a test in the state of Texas for a similar living donor registry and we partnered with them to build the test and build the questionnaire and go through that. And now they're at a point where they're trying to figure out where they are with the Texas model and how and when do they want to roll that out nationally, and so I can't speak for them, but we're in conversation with them too, so we're trying to cast a wide enough net to kind of catch all of the opportunities that we can.
Speaker 1:So before I mean, you know I don't want to keep you here all day and I'm sure a couple of people might have fallen asleep, but I want to talk about policy and advocacy. I know you mentioned a few things, but you know the NKF has absolutely. You know, you said which I love that that you got like coaching from your people on how to talk to the people in Washington DC. So you've, guys, have been instrumental, for sure, in shaping public policy for kidney health. So what are some of the legislative efforts that you guys are working on now?
Speaker 2:Well, we're doing two things. We're working on legislative things, but we're also working on a lot of regulatory work as well. So we kind of run both sides of it. So we kind of run both sides of it. But legislation right now, the bill that we were optimistic about coming through, this continuing resolution of December it didn't make it true, but was the expansion of NELDAC.
Speaker 2:Neldac is the National Living Donor Assistance Center, thank you, and there's so many acronyms with the government the government, you know they'd kill you with these things um but um, you know, we believe for a long time, the amount of money they have available to them and the restrictions they placed on that money were just not effective at all.
Speaker 2:And so we've been, we've been advocating, uh, to get expansion of that and relax and change some of the standards and some of the requirements and also improve some of the transparency, because, quite frankly, it's been difficult to figure out who got what and was the money being spent well, if at all. And so we were really pushing for that bill to happen and for who. Didn't make it happen, and Fort Worth didn't make it. So that's going to be. We're in the process now of kind of looking at this new Congress, which just started last Friday, and trying to get a sense of what their objectives are going to be and what their priorities are going to be and how that informs what we do. But we do believe this expansion of NLDAC is something we're going to prioritize going forward this year.
Speaker 1:So I'm not a hugely political person and it doesn't matter what side of the aisle that you're on, but from what I know, being in the in the kidney world, the last time President Trump had his administration in there were a lot of forward movement within the government. You know when it came to, you know changing regulations and you know getting legislation through. So how do you see, I assume, are you optimistic about the new administration coming in, based upon you know, what previously happened when President Trump was in office?
Speaker 2:Well, I think I'm going to choose to be optimistic. You know, I think we really don't know a lot about the new players just yet. Right, we do know a lot of the non-appointee, the career folks that were instrumental in helping us advance kidney disease as a priority in the Trump administration. A lot of them are still there and still in place and we've been in conversations with them and I'm optimistic from what I hear from them. And you're right, we were successful in the Trump administration driving an executive order called Advancing the American Kidney Health Initiative. That had a component around awareness. It never got the funding. All of this got derailed because of COVID, right, but it had an awareness component. It had components around changing the reimbursement model for kidney disease. It had a lot of things that we helped architect and we were very proud of. You know, in the Biden administration we were successful with them too, but in a different way. The Biden administration and the Senate Finance Committee, which is in a very bipartisan, nonpartisan way, really wanted to look at reforming the transplant system and we did too. So we were able to connect with them on not only getting the new bill passed called Securing the Oregon Procurement Transplant Network get that bill done, network, get that bill done, and we were also able to get more funding for that two years ago, which continued on in this recent continued resolution. So we're optimistic that we're going to continue to move forward with some of the reforms that we're trying to do.
Speaker 2:Around transplant, the Trump administration previously was very focused on the whole continuum of kidney care Right and it was a very broad initiative. It got shortened to transplant only under Biden. So we're not really sure how it's going to go next. I think the best argument we have is that 1% of the Medicare population spends about 8% of the budget. You know it's $34, $35 billion. That's with a B right, with a B with a kidney failure right and dealing with kidney failure, and this is not just for old people, this is for people that are under 65, that are also part of this population. So I think you can not know anything about kidney disease. You can not care about kidney disease at all at a personal level, but if you care about solvency, the federal budget, you should care about kidney disease. So I think we've got a pretty strong argument, regardless of who's in power and who's in what committee and what regulatory body. So I'm going to be optimistic and believe we're going to get some. We're going to continue to have a good track record of getting things done.
Speaker 1:That's good. I'm a glass half full kind of guy myself. So you know, currently right now, sadly to say, I don't have any listeners right, because this episode has not aired yet but when we do have the tens of thousands and millions of listeners, what's the most important action that they can take to support, you know, kidney health and organ donation action that they can take to support um.
Speaker 2:You know kidney health and organ donation well. I think at a personal level, the best thing everyone can do um is really understand if they're at risk personally for kidney disease and we have a site called minuteforyourkidneysorg or they can talk to their primary care physician and say they want to understand it. But if you're a person of color, if you're overweight, if you have a history of diabetes or hypertension in your family or history of kidneys in your family, you're pretty much at high risk and you should have a thoughtful conversation, you should get tested. I think, also at a personal level, you should find out. If you're, you should look and make sure that you're a registered organ donor. Absolutely, I think you can do those things. I think, if you're inclined, I think you should learn about being a living donor and come to our site is a good place at kidneyorg and we can walk you through what it means, the implications, the benefits, the cost, the whole realm, if that's important to you.
Speaker 2:If you really feel a calling for advocacy, we need more advocates. We need more people that are going to help us talk to congressional leaders at the federal level, but also at the state level I mean states have a big play in this and a big stake in kidney health and kidney disease. If you care about veterans, if that's important to you, veterans are lost. They're lost in this system. There are a lot of veterans that need a kidney, that that they need a kidney from a living donor. They need support, they need a VA to prioritize their kidney health, and so there's a lot of ways to advocate, depending on where you as a person are interested. If you want to be an advocate for us, we have a very formal program called Kidney Advocacy Committee, where we train people how to speak, how to write letters to the editor, how to write letters to government officials, how to present their issues, and we invest a lot of time in them. If that's so inclined for that, reach out to us for that too. We have a lot of ways to get involved.
Speaker 1:So I have done a kidney walk before in Manhattan, which was awesome, and I know no one could see me, but I'm wearing right now the orange scarf that I received last year when I got selected to go and help lobby for, you know, kidney related health legislation and you know and initiatives going to be in March, if I'm not mistaken, is when you're going to be doing it again and I got selected again and, just so people know it is completely random, you know you apply to go help on that particular day, so I'm going to bring my orange scarf and maybe I'll get a second scarf, but it's really moving. You know going down to the Capitol and lobbying and having people here. You know my story as a donor and you're there with patients or recipients. It's really important work. So, before we close, is there a particular story over the last 10 years with your work at the NKF that really captured your heart and kind of encapsulates the National Kidney Foundation and what it can do for people? Is there one that you could share with us?
Speaker 2:Yeah, I think the one that really really struck me and got me committed to the NCAF was when I first went to a kidney walk in New York. I'd never been to something like that. I'd never been to a 5K or a 10K, any kind of funerals. I think I'd been to a gala one time and I thought it was the most boring thing. I'd never been to a 5K or 10K, any kind of funerals. I think I'd been to a gala one time and I thought it was the most boring thing I'd ever done. And so I really didn't understand this kind of nonprofit. You know health care world. But the local team asked me to come to a walk and get involved and I went and I remember calling a friend of mine saying I don't, I don't understand what I'm, what am I supposed to do with this thing? And she said, kevin, you don't know. You don't know anybody that's had kidney failure. You know you did dialysis from home. You don't know anybody. You need to meet people. You're about to go meet the kidney community and you just don't have any idea what that means. And I'm like, well, I guess you're right, but I'll go, and I just thought it was a lame thing. I wasn't going to do it.
Speaker 2:But I went down there and she said promise me you're going to talk to somebody before you leave. And so I did the whole walk. It's like two and a half miles and I hadn't talked to anybody. And I was walking back and I remembered I promised Holly that, my friend Holly, that I would do this. And uh, holly Wittenberg, if you're listening, thank you.
Speaker 2:And I saw this group of a group they were always walk group. They're walking around with similar t-shirts on. They had a picture of somebody and it said team bill on the cover. And I looked around, I looked at the 20 or so people and I didn't see anybody named bill and and so this woman had kind of drifted from the group and I said who's bill? And she said, oh, that's my husband. He, he's not here, he died two weeks ago while on the wait list. Oh, wow, and I thought that's it for me.
Speaker 2:I, I, you know the guilt, the survivor's guilt that comes with that kind of thing, uh, knowing what I knew was just, it was just more than I could take, and so I just said, okay, I'm in, I've got to do something for the National Kidney Foundation, and that story still kind of sticks with me and motivates me.
Speaker 2:But I think beyond that. I think you know I was at a visiting an organ procurement organization back in November down in Dallas a great organization and I I I got to be part of an honor walk where the person was brain dead and the family was saying goodbye and we went to the recovery room and to watch that family go through the goodbye process and then turn right around and there's a huge moment of grief and look back at all of us and say how, how lovely it was that their loved ones organs were going to save so many lives and that their loved one was going to live on through these other people and knowing that I, I was a recipient of something like that. Those two things are just an amazing bookends for the last. You know, 15, 16 years with NCALF.
Speaker 1:So I think that's a perfect segue to my last question before I let you go is what legacy do you hope to leave behind through your work at the National Kidney Foundation?
Speaker 2:It's a good one, right, it's a good one.
Speaker 2:I want us to make a huge difference in saving lives.
Speaker 2:You know, we didn't even have saving lives in the mission statement when I came in, and now it's front and center.
Speaker 2:You know, I think we were afraid to say it, but that's what we're here for and that's what we're going to, that's what we are doing and that's what we want to do, having that, that commitment and that statement, um, and then, and then being able to point to how many people that we've we prevented going into kidney failure, how many people we've gotten off the wait list, how many people we've made healthier while they're on dialysis. And if we can kind of reach these objectives where, you know, these vision pillars, I call them where where we eliminate preventable kidneys not going to to happen in my lifetime, you know, nor my tenure, anyway, but I think if we can make a big dent in this 34 million undiagnosed people, if we can make a big dent in the number of transplants we have every year and really get dialysis to where it's a temporary treatment, if we can do that, then we can at least lay the groundwork in my tenure for that I'll be happy.
Speaker 1:Well, I think that's a great legacy, and you said something that resonates with me, because I feel like since the last now it's, I think, almost six years since I've been a donor, people are always afraid, they're afraid of and I'm talking about the government, uh, institutions like yours, donors, patients, recipients they're always afraid of what someone might think, and we have to stop that, because today, uh, when this podcast airs, 13 people will die uh, on that list waiting, and tomorrow, another 13 will die, and a day after another 13 will die.
Speaker 1:So I think we have to stop being afraid. I think we have to make some bold moves in the industry, and I can't thank you enough for being my friend. Of course, I consider you a friend. Hopefully it's reciprocated. I do and I really thank you for being my first guest on let's Talk Transplant, and I want to wish Kevin Longino a prosperous 2025 and beyond. I'm so glad that you are the CEO of the National Kidney Foundation and I hope that we can have more interactions in the future and we can both make changes in this industry.
Speaker 2:You bet, mike. I really appreciate the partnership over the years. I'm really excited you're doing this podcast. Let us know how we can help. We'll definitely put this out on our social media channels and, if we can help with you, know future guests or come back and talk about drill down on any specific topics in more detail. Love to anytime.
Speaker 1:Well listen, kevin. As my wife always says, when people make offers like that, you better be careful, because Michael will come and claim that.
Speaker 2:Okay.
Speaker 1:Well, I'm in. Thank you, Kevin, I appreciate it. Thank you. Thank you for listening to this episode of let's Talk Transplant. So, whether you're sipping your morning coffee, taking a walk or commuting like my buddy Dan, remember to like and follow let's Talk Transplant. You're about to discover a world far more intriguing than you ever imagined.