Donor Diaries
Donor Diaries is a podcast about the beauty and messiness of living organ donation. Get ready for some amazing stories about what happens when people decide to share their organs with other people, when people chose to share life. The sharing of kidneys and other organs is an incredibly fascinating topic that teaches a lot about kindness, love, and life! There are over 100,000 people on the kidney transplant waitlist today, and sadly about 13 people die each day waiting for a kidney that they never receive. One in three Americans are at risk for developing chronic kidney disease and one in nine already have kidney disease. Most don’t even know it. Donor Diaries shares unfiltered stories of kidney donation through the voices of living donors and straight talk from transplant experts who are committed to bringing the conversation of living organ donation to the forefront of society, so patients no longer have to die or suffer while waiting for a transplant.
Donor Diaries
Living Donors: Shedding Pounds to Save Lives | EP 26
Imagine stepping into a world where giving the gift of life is made more accessible to all. That's the transformative journey we embark on with Ruby Rorty and Rachel Watson in the latest episode of Donor Diaries, as they share the details of a program called Project Donor. Ruby, from Stephen Levitt’s Center for RISC, shares the program's genesis and its profound impact on the healthcare sector's donor eligibility dilemma. With a focus on mutable health issues, this initiative paves the way for potential donors like Rachel, who recounts her heartening story of becoming a non-directed kidney donor and how Project Donor's comprehensive resources made her life-saving contribution possible.
Transitioning from eligibility to empowerment, our conversation reveals the personal touches that set Project Donor apart. Rachel's recount of the caring gestures she received—cards to edible arrangements—post-donation, underscores the program's commitment to holistic donor care. Echoing the significance of this support are the voices of case managers, the unsung heroes from the University of Chicago's Crown School of Social Work, who ensure a seamless experience for participants. As we celebrate both the program's success and the candid, inspiring advice shared by our guests, we're reminded of the deep connections forged through shared stories of hope, health, and humanity.
Relevant Links and Resources
Radical Innovation for Social Change (RISC)
Project Donor
Project Donor Report on American Living Kidney Donation
Challenges and Opportunities Report Summary
Crown School of Social Work
Update on Victoria, first Project Donor Success Story
Twitter Community Notes
People I Mostly Admire Podcast
Anti-obesity pharmacotherapy to facilitate living kidney donation
Obesity Statistics
Multiple Reasons for Living Donor Denial: A Single Center Experience
Outcomes of Living Kidney Donor Candidate Evaluations in the Living Donor Collective Pilot Registry
Welcome back to Donor Diaries. I'm your host. Lori Lee Ever pondered the annual count of individuals who donate a kidney each year? It hovers around 6,000, yet, despite advancements in technology and the simplification of surgery over the past quarter century, this figure remains relatively stagnant. Though precise figures elude us here, it seems that less than 10% of those expressing initial interest in donation actually proceed to surgery. During the first step of evaluation, which is an extensive health survey, somewhere around 20% of prospective donors are disqualified. These numbers vary from center to center. Additional drop-offs occur due to wavering commitment, recipients finding alternate donors or unfortunate circumstances like when the intended recipient passes away. The paramount concern Elevated BMI. Most transplant centers set a BMI threshold of 35 or below for donor eligibility. Currently, over 30% of Americans are overweight and more than 42% are obese, so naturally we can expect these prospective donors to be ruled out. But what if these individuals teeter on the brink of a healthy BMI? What if minor lifestyle adjustments could render them eligible to donate? Wouldn't it be remarkable if we could aid these prospective donors in qualifying?
Speaker 1:Today we're joined by guests who delve into this matter Ruby Rorty, an analyst at Stephen Levitt Center for Risk, spearhead's project donor, a risk-incubated nonprofit dedicated to assisting liver and kidney donor candidates in attaining transplant eligibility. Alongside Ruby, we have Rachel Watson, a non-directed kidney donor whose journey benefited from this remarkable program. Welcome, ruby and Rachel. Thanks. Thank you so much for having us. Ruby, let me start with you. Can you tell us what RISC is?
Speaker 2:The Center for RISC, which stands for Radical Innovation for Social Change, is a think tank and nonprofit incubator at the University of Chicago. We were founded by Freakonomics co-author, steve Levitt, and at RISC we seek unconventional solutions to big problems. We work on a wide range of issues. A few that come to mind are adverse placements among foster youth, green infrastructure, evidence-based curricular initiatives and organ donation.
Speaker 1:Can you give us an example of a risk initiative that summarizes what you mean by big problems with elegant solutions?
Speaker 2:Gosh, so we were working with Twitter and talking about partisanship and the quality of online discussion, and the result of that collaboration is what became Twitter Community Notes. And so that was a situation where risk analysts had this idea that where tweets without sort of audience feedback could spiral into misinformation and really contentious debate, there was this idea of crowdsourcing, fact fact checks and just relying on the Twitter community to be able to have a meta conversation. Community notes were something that I think made that platform workable and that distinguish it from other platforms like Instagram and Facebook.
Speaker 1:It's exciting work. So what is Project Donor?
Speaker 2:Project Donor was born when a former risk analyst who was interviewing medical professionals to identify gaps in medical access learned that many people who are eager to give the life-saving gift of a kidney or liver to a loved one or a stranger are turned away at the door for mutable health reasons like BMI or, at some centers, cigarette use.
Speaker 2:Oftentimes these donor candidates are not informed that they could become eligible donor candidates with lifestyle changes, and so this insight became Project Donor, and we are devoted to helping living organ donor candidates achieve eligibility and their health goals in advance of donation and to maintain their health in the long run.
Speaker 2:A bunch of our team comes from an economics background. I studied economics, so one way to think about it from an economic perspective is that you have this sort of human supply chain in healthcare of donors and of organs from living donors. At this moment, you have a bunch of people who are almost making the eligibility cut and they are really excited. I mean, often their wellbeing is hugely tied to whether they're able to be a donor, because the most important person in their life will die without an organ and is not likely to receive one, you know, from off the waiting list or from a deceased donor, and so these people are falling just short, and often the intuition among nonprofits and experts in transplant is to go and try to recruit more living donors, which is a practice that I totally endorse. I think more people should be living donors, but we have this idea instead of working with the people who are just short of eligibility, but who would be safe, healthy candidates with just a little extra support.
Speaker 1:So you're looking at your supply chain and you're saying isn't it easier to just help this person become eligible versus go out and find a new person who is eligible?
Speaker 2:Our research suggests, as you mentioned in the introduction, that over 90% of people who take the first step toward organ donation never ultimately undergo surgery. Data from the National Kidney Registry, the NKR's screening service, suggests that about a third of people who are ruled out by the NKR in that initial stage are excluded due to BMI, and at some centers, nicotine users are also excluded, which adds to the number of people being rejected for mutable health concerns. And so, from where we're standing, this amounts to potentially thousands of people who are eager candidates for living donation, who could safely qualify, but who aren't given the tools necessary to achieve eligibility.
Speaker 1:Wow, that's really important. So what specifically does Project Donor offer to potential donors?
Speaker 2:So we partner with a number of corporate providers who allow us to offer weight loss, smoking cessation and emotional support resources to our donors free of charge. The program that people pursue is up to them and customizable depending on what mutable health issue has been flagged by their transplant teams. Folks who are in our weight loss program receive a free electronic scale delivered to their door and can choose between three commercial weight loss systems new nutrition, on-point nutrition and WW formerly Weight Watchers. Those who are in our smoking cessation program receive nicotine products, gum patches, lozenges delivered to their door, and our participants also, regardless of whether they're in the smoking or weight loss program or both, also have access to free talk therapy via BetterHelp Online Therapy. In addition to these material health resources, every Project Donor participant is assigned a case manager who's kind of like a coach and a cheerleader, and their case manager checks in with them, texting and calling them, helping them problem solve when obstacles arise, and celebrates every step of the donation journey with them.
Speaker 1:What a great partner that would be for somebody. Rachel, you know firsthand what it's like to work with Project Owner. Can you tell us which program you took advantage of and why?
Speaker 3:I took advantage of the Noom program which, prior to being connected with Project Owner, I had never heard of Noom before. So when those three options were given to me, the only one that I'd heard of was Weight Watchers, or WW, as you said, ruby, and that was something that I had heard of Weight Watchers growing up, and it just seemed like Noom was a little bit more modern. It definitely met that millennial minimalist vibe, so I was more drawn to that. I really liked the layout of it and it worked really well for me.
Speaker 1:Can you tell us a little bit about what happened when you initially stepped forward to donate?
Speaker 3:I first found out kind of about the need for kidney donation right after I graduated college and I'd read a newspaper article about the process and it was highlighting someone who was looking for a kidney and who actually received one from a member in the community.
Speaker 3:And you know, I'm fortunate enough to have been pretty ignorant to what that whole process is like. I didn't know anyone who had kidney disease or had to get transplanted in Oregon. So reading about it, it really was pretty shocking to me the number of people that were waiting and what that process is like for them. I live in Chicago and I am lucky enough to have a lot of different options when coming to, you know, looking at healthcare providers and really fantastic systems in the area. So the first one I reached out to actually, you know, I had the initial pre-screening phone call and we got to a question about BMI and after we answered that, like it was it was done, the conversation was over. They were like you know, you don't qualify. There was no discussion about a path forward, it was just end of the phone call, that's it. And so I ended up after that reaching out to another transplant center, loyola, and they were the ones who actually, after I passed all of the other testing, came back and referred me to Project Owner.
Speaker 1:What did it feel like to be turned away by that first center it?
Speaker 3:sucked. It did not feel good. It is hard when the topic is weight and especially body image. Yeah, you know, for that to be the one obstacle that's in the way of donating seems especially tricky because on paper they came back and they said everything looks great, but just to make sure that you're in the healthiest possible state, we want you to lose 17 pounds, which that's something I totally respect and I don't have any issue with that. I'm glad that I did it. It's such a harder task than just lose 17 pounds, and it's not about the work or the routine change that goes along with losing weight. It's dealing with the emotions that go with really addressing that and to have that be the thing that is stopping trying to help another person. In a way, like I, view organ donation as the ultimate empowerment of your own body. Right, you're taking a healthy part of you and giving it to someone else so that they can be healthier, and that's so affirming. I first became aware of negative feelings surrounded my weight in my body when I was in third grade.
Speaker 3:And I was going through this process when I was 26. So that's 18 years of it being the dark cloud, the elephant in the room, and to have this thing that you've been thinking about for 18 years be the thing that's in the way of donation was just a lot to kind of emotionally grapple with at first.
Speaker 1:I was also told I had to lose a little bit of weight before I donated and, like you said, it's something that I was already ultra aware of. It was something I knew that, even if I wasn't going to donate my kidney would be healthy for me to do, but I certainly would have been super frustrated if it stood in my way. Imagine what that would feel like the pressure to lose 20 pounds quickly so that you can save somebody who loves life now.
Speaker 3:I remember the days where it's like you know, you weigh yourself every day and you gain an ounce and you feel like, oh my God, am I ever going to be able to do this thing? I'm letting everyone down, I'm withholding this gift to someone else. It's so frustrating and it's so easy to feel defeated when you're working with something that has so much riding on it.
Speaker 1:Yeah, exactly. So what was their team like to?
Speaker 3:work with Project donor. They could not have been easier to work with, really. So I got the recommendation from Megan Parker she's the living donor coordinator over at Loyola and I think within 24 hours someone from project donor called me and I remember being two months into working with them and realizing that I had never had a need to Google them or go to their website, which I'm the type of person if I'm going out to eat, I'm Googling the restaurant, I'm looking at the menu, I'm looking at photos of the interiors. So the fact that I'd had a working relationship with an organization who had been supporting me for months and there was never a need to seek out any more information from them because they were providing everything that I needed, I think that's really a testament of how easy they were and how positive of an experience it was to work with them.
Speaker 1:So you said that you use Noom. What other resources did they have available to you?
Speaker 3:I use Noom, and then I also had the team support member who was checking in on me. I think the early stages it was Noah and then Tatiana, so yeah, and they would just check in and it was a nice balance between support without pressure. The timeline of that process was something that I was really insecure about, especially given my first interaction with a donation center being that of denial. I really thought that if I took too long, eventually Loyola or Project Donor or someone was going to come along and be like you know what you're out, you're just flat out denied Good shot. But it's over, yeah, and so I was really nervous about that, but it wasn't something where I felt pressured by them. It was supportive, it was not pressuring, which was something I was really appreciative of.
Speaker 3:And then I know they have community meetings as well that I think might have started right after I donated or around the time that I was donating. So I didn't attend any of those. But I mean, even after donation, they've, they've kept up with me and I actually I know I mentioned it on our call and I also know that this is an audio medium, so the listeners will just have to trust me, but I did find the card that they sent me after I donated Ruby, your name is signed to it, so thank you, but they'll send me a card and an edible arrangement after I donated and it's so sweet and obviously it meant enough that I kept it. So, yeah, they've just been so lovely and supportive and I really can't speak highly enough about my interactions with them.
Speaker 1:Oh, did the edible arrangements include the chocolate covered fruit or did they?
Speaker 3:It did, and I ate those first.
Speaker 2:Rachel, I'm so happy you had a positive experience with Project Donor. We are so proud of all of our donors.
Speaker 1:We're really glad to hear it worked out, I know, and she kept the card. That's got to make you feel good. You really made a difference, ruby. It does.
Speaker 2:I think people really appreciate the little extra touch of something like a card or an edible arrangement, because so much of the experience of donating in a hospital is very clinical. So it's just nice to have a whole team of people rooting for you, whether it's across the city or across the country.
Speaker 1:Ruby, can you tell us a little bit more about the coaches that Rachel was referring to and what their qualifications are?
Speaker 2:Yeah, so all of our case managers are University of Chicago graduate students in a field linked to public health or social work. Most of them are students at the Crown School of Social Work, one of the best programs in the world, and we have a partnership with Crown where students are able to serve as case managers as part of their field placement, which makes it a core part of their degree. Through that program they receive mentorship from a seasoned MSW and it's kind of a way to launch their careers in social work with an experience in the field doing work serving clients. We are really lucky to be at a university with a ton of gifted, passionate public servant students, and it's been amazing to sort of have this elegant solution to the problem of case management.
Speaker 1:That's another win-win which you guys seem to be really good at finding. It's our preferred approach. How long have you been offering these services, ruby? How long?
Speaker 2:have you been offering these services, Ruby? So the idea of Project Donor was born in spring 2022. Our first surgery was in February 2023.
Speaker 1:What did you do to celebrate that first surgery?
Speaker 2:Actually, a colleague and I flew out to Philadelphia to support Victoria, our first ever donor, as she went into surgery. We were able to meet her and her kids and EJ, who was a young boy in her community to whom she was donating. So Victoria donated to a stranger and received a voucher that she was able to give to EJ, who could then redeem it when he needed it, and so we were able to celebrate with the recipient and the donor and their families in person, which was really magical.
Speaker 1:That is really magical. I'm glad that you guys took the time to celebrate. I don't think that we take the time to celebrate those wins, and that was the first big win of how many now?
Speaker 2:We're at about 20 surgeries and we have four folks who have achieved all their goals and are awaiting surgery and how many people have opted into your program total so far? So we currently have 221 people in our program and our program has hosted over 300 people overall. Yeah, it's growing incredibly fast. We have more than 30 transplant centers represented among our participants and we anticipate the project donor will lead to dozens and then hopefully hundreds, of additional donations each year.
Speaker 1:And who are you mostly helping?
Speaker 2:Is it men, women, both, the majority of participants on our program are women, and the majority of folks are pursuing weight loss resources as opposed to smoking cessation, and the ethnic breakdown of our program pretty much matches the general population.
Speaker 1:Interesting. Are there resources available to donors who've already donated post-donation?
Speaker 2:So everyone who achieves eligibility and donates through Project Donor has access to our resources. Following donation, we ask that everyone on our program continue for at least a year and we offer resources past that point. If one of our participants runs into health challenges down the line, we want them to be able to come back to Project Donor and get the support they need to maintain their health long-term. At this point, we're not able to provide support to post-surgery donors who were not involved with Project Donor before their surgery.
Speaker 1:Fair enough. And Rachel, are you still using Noom as a resource?
Speaker 3:Yeah, I'll just say I've been revisiting it and using Noom again and it's great to still have that resource and access to it, even though it's 10 months past my donation.
Speaker 1:That's great. You mentioned that it's maybe post-donation. It's hard to get to the gym, right? Has Project Donor considered offering drugs like Ozempic to donors who are struggling to get that weight off?
Speaker 2:Weight loss drugs like Ozempic are such a hot topic in transplant and beyond right now and, like many people, we at Project Donor are cautiously optimistic about the prospect of Ozempic for legitimate medical use in the world of living donation.
Speaker 2:So far we have no plans to pursue it or to provide weight loss medications to our participants, at least until transplant physicians, bioethicists and social workers have approached a more solid consensus on its use in donor candidates. Two things are really salient in how I'm thinking about some of the glutide drugs like Ozempic. First, it's extremely expensive and second, it has to be taken forever in order for patients, whether donors or recipients, to maintain the effect, and so this makes the weight loss drugs a categorically different level of investment than the behavioral interventions that we focus on today, and we haven't seen clear signals from the transplant physician community that they're approaching a consensus about the safe use of these drugs and donor candidates, so until then it's not really on the table for us. But my main concern is that this is a resource that needs to be taken into perpetuity, and it's really important that people who are concerned with donor and recipient wellness are ready to provide it as a resource into perpetuity, because otherwise I think we could see real, real backsliding in folks' health conditions.
Speaker 1:Rachel, had that been in the menu of options next to Noom, how would you have felt about that?
Speaker 3:Yeah, that's a great question and I don't know much about it, but I do love an easy way out, me too. I mean, I think that's a very human thing to want right, and especially when you see like celebrities using it, and if it had just been like a little option there, I could have rationalized it. Oh, project Donor supports it. So it's probably good, ruby, that you guys are giving it more consideration, because there's people like me who would not think twice and would click the little button and then end up having to take it for the rest of my life. But I'm really interested to see how long-term it impacts people and to see what the side effects are, if any.
Speaker 1:I mean, I guess what scares me about it is there's this drug available to them to help them get skinny, and we've got this culture in our country of being obsessed with being skinny. Are we donating a kidney to get our Ozempic or is that just out there thinking on my part that people might go to the extent of donating a kidney to have lifetime access to a drug that's going to keep them looking good?
Speaker 3:Yeah, that's a great concern. I don't have an answer for it, but that is a great concern.
Speaker 2:I would jump in and say that is, I think, one of the biggest concerns when we talk about what undue influence would look like. It's why none of Project Donor's resources are, or will ever be, conditional on donation. We never feel like they're pursuing these resources because they can't get them anywhere else and then they're obliged to donate. Culturally, america is incredibly broken, I think, in the way it thinks about weight and appearance and health and the way it conflates those three.
Speaker 2:I think the sociologist and New York Times columnist Tressie McMillan Cottom has written about this really, really well and talking about how weight loss drugs like Ozempic threaten to upend how we think about weight, how we think about how people look as a perfect indicator of their health. For example, bmi is not a perfect indicator of health. It's not a one size fits all indicator and there's lots of really good literature on there on why it's not maybe the best way to assess people's health, and so I think that the transplant community and our broader society has so much work to do and how we think about the relation between weight and health. Ozempic could have lots of benefits, but I think it'll only make that more complicated.
Speaker 1:That's so interesting. I'll be curious to see what happens with that and what the long-term studies indicate. So, ruby, what's next for RISC and Project Owner?
Speaker 2:Project Owner will keep helping people achieve donation eligibility and supporting our donors before and after surgery.
Speaker 2:That's on the nonprofit services and implementation side of things, but on the research side, risk is also a think tank.
Speaker 2:We've just released a report based on about two dozen interviews with members of the transplant community. So in the future I'd love to build on that report, which identified key obstacles of potential interventions to improve America's living organ donation system. I'd love to work on more projects in organ donation, potentially developing structures to reimburse donor candidates for the bureaucratic burdens involved in the evaluation process for organ donation. I'd love to work on developing a voucher system for liver donations to bring that remarkable technology that exists in the world of kidneys to liver donors and recipients, and I'm very interested in the conversations about compensation happening in the transplant community. Right now. I suspect we're in a really unique moment for reform, teed up by Biden's dismantling of the UNOS monopoly and his signaled interest in organ donation reform, and so I'm really curious what the next few years bring. Our founder, steve Levitt, hosts a podcast called People I Mostly Admire, which I definitely recommend, and so there's more to come from risk outside of the realm of organ donation too.
Speaker 1:For the sake of the transplant community. I hope that you personally stick in this industry, ruby, because you are helping so many people and you should be really proud of this program that you've grown. It's just truly incredible. I'm looking at a donor right now who is here having donated because of your program, lori.
Speaker 2:That's incredibly kind, and I think for us, donors are heroes already, and anything that our society and our institutions can do to support them is an essential service, and so I'm just so grateful to Rachel and all of the folks who have donated through Project Donor. Interacting with donors, you know all the time, is the best part of my job, because they are remarkable people who bring energy and goodwill to every space that they join, and so I feel incredibly fortunate to have fallen into this world, and I hope I can get to continue to work in it.
Speaker 1:So, rachel, what would you say to another prospective donor who needs to lose some weight to donate?
Speaker 3:I don't know how wise I am, but I think of what I wish that I had told myself at the time that I was going through the process, and I think there's really two things that I can take away from it, one of which is, you know, looking at the culture of of weight loss and, just in general, you know what you're doing in that process.
Speaker 3:The end goal is not just to be able to donate a kidney, but is to overall have a healthier body, and I think in the act of pursuing health, it's important to not do harm, and weight loss culture can be so wrapped up in very unhealthy methods. And also, you know just the concept that the timeline for that process is different for everyone. It's hard because you can be doing it and someone's waiting on your kidney. It could be a loved one, it could be a stranger, and so there's that artificial pressure that's put on it. And you know I lost 17 pounds over the course of three months and during that process it really felt like I was not doing it fast enough. But there are a lot of wrong ways that can negatively impact you. So to prioritize your wellbeing, both health-wise and mentally, I think are really important when you're going through this process.
Speaker 1:I couldn't agree with you more. That is wonderful advice. Thanks so much for sharing your story with us today. Thank you, thanks for having me. I've been looking forward to this interview and I have appreciated getting to know both of you so much, so thank you for coming today. Thank you, guys. You guys are great and very easy to talk to.
