Taboo Trades
Taboo Trades
Kidneys and Challenge Trials with Josh Morrison
Josh makes the case for paying kidney donors and infecting people with Covid-19. We both admit to being bad at big law.
Josh Morrison is the founder of three nonprofit organizations: Waitlist Zero, which envisions an America where no one dies because of a shortage of transplantable kidneys; the Rikers Debate Project, which teaches debate to formerly incarcerated students in six states; and 1 Day Sooner, an organization that advocates on behalf of Covid-19 challenge trial volunteers. Josh was a corporate lawyer when he donated his kidney to a stranger in 2011.
Helpful links for this episode:
1. Waitlist Zero http://waitlistzero.org
2. 1 Day Sooner https://1daysooner.org
3. Rikers Debate Project http://rikersdebateproject.org
4. Linh Chi Nguyen, Christopher W Bakerlee, T Greg McKelvey, Sophie M Rose, Alexander J Norman, Nicholas Joseph, David Manheim, Michael R McLaren, Steven Jiang, Conor F Barnes, Megan Kinniment, Derek Foster, Thomas C Darton, Josh Morrison, 1Day Sooner Research Team, Evaluating use cases for human challenge trials in accelerating SARS-CoV-2 vaccine development, Clinical Infectious Diseases, , ciaa935, https://doi.org/10.1093/cid/ciaa935
5. Josh Morrison, It’s time to treat organ donors with the respect they deserve, The Washington Post, https://www.washingtonpost.com/news/in-theory/wp/2016/01/01/its-time-to-treat-organ-donors-with-the-respect-they-deserve/
6. Meagan E. Deming, et. al., "Accelerating Development of SARS-CoV-2 Vaccines — The Role for Controlled Human Infection Models", The New England Journal of Medicine, https://www.nejm.org/doi/full/10.1056/NEJMp2020076#article_references
7. Lynch, Holly Fernandez, et. al, Ethical Payment to Participants in Human Infection Challenge Studies, with a Focus on SARS-CoV-2: Report and Recommendations (August 14, 2020). Available at SSRN: https://ssrn.com/abstract=3674548 or http://dx.doi.org/10.2139/ssrn.3674548
8. Organ Donor Reimbursement Petition, https://docs.google.com/document/d/1OfiOEkgPmPBtDx6k38GckXPDndvbKp1HtJPfdnCB2PU/edit?ts=5cbe977c
I went to Harvard Law School, if I remember. I
SPEAKER_02:did. I did.
SPEAKER_00:And what firm did you work for? One of the big firms, but I don't remember which one. I
SPEAKER_02:got roped in gray in Boston for a few years after law school, though I wasn't very good at it.
SPEAKER_00:Well, join the club. Hey, hey, everybody. Welcome to the Taboo Trades podcast, a show about stuff we aren't supposed to sell, but do anyway. I'm your host, Kim Kravick. Welcome, everyone. I'm excited to have with us today a super special guest, Josh Morrison. Josh is the founder of three very effective nonprofits, Weightless Zero, which envisions an America where no one dies because of a shortage of transplantable kidneys, the Rikers Debate Project, which I actually just found out today as I was researching for this. It teaches debate to formerly incarcerated students in six states, and an organization that has been in the news a lot lately, One Day Sooner, which is an organization that advocates on behalf of COVID-19 challenge trial volunteers. Now, two other very important facts about Josh. First is that he is a fellow lawyer. Yay. Yay for lawyers everywhere. And so, Josh, you might have to refresh my memory on this part of your bio. You went to Harvard Law School, if I remember. I
SPEAKER_02:did.
SPEAKER_00:I did. And what firm did you work for? One of the big firms, but I don't remember which one.
SPEAKER_02:Yeah, Brooks and Gray. in Boston for a few years after law school, though I wasn't very good at it.
SPEAKER_00:Well, join the club. I wasn't either. Okay. And so the second thing to know about Josh is that despite his young age, he is one of the people I most admire. And you're going to understand why that is when we're done with this podcast, because he's really quite a special person. So Josh, now that I've thoroughly embarrassed you, welcome to the podcast. Yeah, thanks for having me. I'm really excited. I am excited, too. Thank you for doing this, and it's really good to see you. And I know that you've been super busy lately on things that we are going to talk about in due course. So one thing I wanted to start with is the important fact that you are, if I recall correctly, a non-directed kidney donor. So for listeners, rather than donating to a family member, as is more common with kidney donors, Josh donated to a total stranger. Very rare. I actually looked up the numbers for 2019 from OPTN this morning, and it looks like there were 386 for 2019, which is actually a record high. So that's good. But I mean, obviously, still a very small number. So can you tell us a little bit about that decision and how that came about?
UNKNOWN:Yeah.
SPEAKER_02:Um, yeah, finally, as of, as of 2019, it's, it's fewer than one in a million Americans, uh, donate a kidney each year. When, when I did it, it was, it was around one in a million or a bit less. Um, and so I donated on December 13th, uh, 2011. Um, and I remember that the dates are sort of like second birthday where I get to like feel, feel good one day and another, an extra day a year. Um, and it was this really great decision for me that made me really happy. And I first started thinking about donating in 2007, uh, there's a a woman named Sally Sattel who needed a kidney, and she luckily ended up getting a transplant. But she wrote an article in the New York Times Magazine, I think called Desperately Seeking a Kidney, and it was about her experience searching-
SPEAKER_00:That's a great article, by the way, just to give a pitch for Sally on here, because that's... I thought really, I think really presents a facet of this that is often lost in the debates, right? Which is what it feels like to be in need of a kidney and not be getting one, at least at that time. So I'm sorry to interrupt you. Please go ahead. Oh, no, no, because that's exactly right.
SPEAKER_02:Because I think it shows, you know, there were two things that really stuck out to me about the article. The first and probably the more conscious one at the time was, you know, I learned you can save someone's life, you can give a kidney, and the risks to you are much less than the benefits to them. And that was new to me. I was like, wow, that seems like a kind of cool superpower. And then the other thing though, which I don't think I noticed as much at the time, but the emotional journey that Sally talked about really resonated with me because she had three different people say yes to donating and then back out. And you could just see the sort of loneliness of feeling like you need someone else to save you and not wanting to be a burden And then just also how it just affects all of your social relationships. The person I donated to, we became friends afterward. And he told me he was on the waiting list for eight years, I believe, before he got a transplant. And he said that whenever he, you know, would see friends, which was kind of less and less often as the disease went on, he said it was like a dead body. The idea of living donation was like a dead body in the room where like they weren't offering and like he wasn't asking. And so that was something that really stuck out to me about what Sally wrote. And it's interesting that, you know, she is a big advocate. This isn't how, you know, this isn't what the article was about. It's not what I took, you know, from that article originally, but it was she's a big advocate. advocate for compensation for kidney donors. And I feel like that's something that people don't understand about the idea of compensation is that partly it's about ending this feeling recipients can have of feeling like a burden or this loneliness of hoping that someone is nice enough to give an organ. So that's the first thing that got me thinking about it. And when I read the article, I was like, huh, like maybe this is a good idea. Maybe I don't want to do this. And then I just promptly forgot about it for a year and read another article by Larissa McFarquhar in the New York worker. called The Kindest Cut about people who give kidneys to strangers. And I was like, huh, like, you know, I actually remember this. And, you know, I thought about it and I felt like, you know, I was really lucky growing up. I was very privileged. My parents made a good amount of money. And but more than that, though, they were just really great parents. And I had this really secure, like loving family. I did well in school. I was lucky enough to go to good schools and everything like that. And so I did feel a certain desire, you know, to kind of pay things back. in a way. And also, you know, I had had jaw surgery when I was younger. So I had been under anesthesia before. So that part of it, you know, didn't really phase me. And I kind of liked the sort of nonconformity of it, of doing this thing that most people didn't do that I thought was a pretty cool idea. So that's what got me into it. And from the time I started thinking about it to the time in 2007 to the time I donated was four years. So I thought about it for quite a while before I did it.
SPEAKER_00:Great. So, you know, one thing that struck me in what you just said is that you met your recipient and became friends with him. And I mean, my understanding is that that's not necessarily the case in all transplant. So how does that work? How did it work in your case anyway?
SPEAKER_02:Yep. Yeah. So basically in order, if you give a kidney to someone you don't know, to meet them, both the donor and the recipient need to kind of turn their keys and want to meet. I donated, I wanted to start a chain of multiple donations where you donate to someone who has a willing but incompatible donor of their own and they donate to the next person. But for various reasons that fell through. And so I donated directly to, to John and the, what was I gonna say about that? So yeah, we both wanted to meet. The way that we did it is a little bit less typical than most non-directed donors would now, which is we met in person, was our first contact. We met at the hospital. There was a social worker there, his mom was there, and I think his stepfather was there, if I remember right. And it was one of the best days of my life. It was this incredible thing. We really got along right away. He used to be a club promoter before he had kidney failure. So he's a very kind of like eloquent, charming sort of guy. And so, so yeah, it was just, it was really amazing. And we ended up, um, you know, we started, started seeing each other regularly. Um, I think we, we had, you know, lunch or something a month or two later. Um, and we mostly, you know, now we, we text a couple of times a year, maybe talk once or twice a year. Uh, usually we mostly text about, about football. Um, that I'm like a really big page from, from Boston. I'm a really big Patriots fan. He does not like the Patriots. Um, he also, I guess is a nonconformist. Um, yeah. And so that was, that was really lucky. I mean, the interesting thing is that most good Samaritan donors, um, give to start these chains, which is great, but it also means that in a way, um, and they do that through the national kidney registry, typically in the United States, which is a really good organization that does the, whose founder is a kidney donor. Um, and that does a lot of things to give benefit.
SPEAKER_00:Garrett Hill, right? Is the founder, right?
SPEAKER_02:Okay. Yeah, exactly. Um, And he's like quite a character. But so usually you donate through the National Kidney Registry and then you, you know, you don't know the person. So it's like the person you donate to probably would have gotten, you know, they had someone willing to give them a kidney, right? So when you meet them, in a sense, you're not exactly meeting the person who's like the most directly benefited or kind of like who's really the person at the end of the chain who didn't have a recipient. That aspect of it, and usually it's, sometimes people do get to meet everyone in the chain and they all get to talk together, but that's hard to set up. Because usually the way it works now, for most places, is they'll introduce you, if both people are willing to talk, they introduce you, you write a letter to the recipient. And then the recipient can like respond. And then usually people like set up a phone call. I kind of like what we did better. I like being able to meet in person first. But, you know, it's not everyone
SPEAKER_00:does that. That's an amazing story. All right. So you went from there to starting Waitlist Zero, right? So tell me, so let me just say, you have an incredible gift for names. Waitlist Zero, One Day Sooner. I'm gonna, from now on, just send you my law review articles and have you give them a title. You don't even have to read them. Just read the first two sentences and slap a title on there. Okay, so tell me about Waitlist Zero and sort of how you made the transition from, I assume you were working at the firm, I know, when you began became an organ donor. And so at some point, you must have decided, I want to do something different with my life.
SPEAKER_02:And so, yeah, exactly. So when I donated... Um, it was this like, you know, wow, I climbed Mount Everest sort of feeling and it was like, well, I can do anything in my life. Um, and I had kind of known, you know, even a few months into, um, my legal career, I'd kind of known that, that being at the law firm, um, wasn't, wasn't a long-term thing, a long-term fit for me, but I was like, okay, I'll, I'll donate, which I donated about, uh, about 10 months after I started work. And then, um, and I'll figure things out. And it was like, well, I can do everything, anything. What do I want to do? And I was like, well, you know, I'll try to be a writer and I'll kind of do that on the side as, you know, while being a lawyer. And it turns out I'm not a very good writer. I also was really intimidated by being a writer. So after a year of trying that and not having much success, it was like, okay, now what do I want to do? And I was like, this living organ donation thing is pretty cool. And in particular, you know, I felt like it wasn't just having been a donor myself that that was part of it, but it was also that I felt like there was this unique opportunity to have this really big impact with policy. And the reason for that is that the federal government pays most costs of kidney failure. That's because Medicare, even if you're under 65, if you have kidney failure and you don't have another insurer, Medicare pays for you. And dialysis is very, very expensive. And so it's something like about$90,000 a year it costs Medicare. Whereas the transplant, if you average the cost of the transplant over about five years, that costs about$30,000. So if you do all the math in a complicated way and, you know, include the fact that transplant people, they live longer and so they incur more costs. Then, you know, the average transplant saves people, saves the federal government about$150,000. So it was like, okay, well, you know, there's that. And then I also felt like there were clear ways that if you put resources into kidney donation, you could increase kidney donation, right? So, I mean, the most low hanging fruit, which we'll talk about is just reimbursing the expenses of being a donor, which are about$4,000 an hour. coverage per donor. But also, I mean, the simplest way to do it is if the government just paid$100,000 to everyone who wanted to donate, that would seemingly increase donation. And that could save maybe something like 40,000 lives a year. So it's more than all car accident deaths each year in the US. And it would still save the government money, right? So it seemed like there definitely were ways to increase donation. If you did it, it wouldn't cost the government money. I felt like As an organ donor myself, I would have kind of a unique ability to argue for those things. And then I had this experience with a law degree and things like that. So I was like, okay, I'm going to go into the kidney field. I started working for an organization called the Alliance for Pair Donation, working for this really brilliant transplant surgeon named Mike Grease. Mike
SPEAKER_00:Grease, my co-author.
SPEAKER_02:Right, right, exactly. And that's how I met you, was by working with Mike. And so that brought me to Toledo, Ohio. I did that for about a year and then got this grant to well, I guess I'll just mention that. So kind of something I was doing at the same time, but wasn't technically part of my Alliance Repair donation work was working on this open letter in support of like, like trying out non-cash incentives for, for donation. And, you know, I worked on that with some other kidney donors, including Alexander Berger, who is a program officer at Open Philanthropy, which is a big foundation. And so we all, kind of thought it made, you know, I put some of my savings in from the law firm, he put in some of his money personally, because he's an effective altruist, and then the foundation put in some money to create Wait With Zero, to kind of try out this idea of an advocacy group that kind of represents living organ donors. And that's also kind of the, I should mention that as kind of a through line between Wait With Zero and Riker's Debate, and One Day Sooner is that each of them is trying to use identity politics in this sort of positive way to improve the way we make various political decisions, to improve the policy decision-making process. So with Wait With Zero, the theory is if kidney donors were treated better, more people would donate. And so if you give kidney donors more power, then they'll be treated better and then more people will donate. With Riker's debate, the idea is if people who are incarcerated, informally incarcerated, had more political power, fewer people would be incarcerated. In the U.S., we incarcerate 25% of the world's jail and prison population. We have 5% of the world's population. Other countries have less violence and less crime than we do, so that would be a good thing. And with One Day Sooner, the idea is, again, if you're representing challenge volunteers, if they have more power, then you'll get challenge trials more often when they're useful and less often when they're not useful. So that was kind of the idea of Wait With Zero, and that started in 2014 is when that began.
SPEAKER_00:Great. So one of, I mean, Weightless Zero has done a number of wonderful things, but one of the most visible projects, I think, has been your involvement in the Trump administration's decision to expand support for living kidney donors to include lost wages and other expenses. So I wondered if we could, if you could give us some background on this. I mean, we have this ban against quote, valuable consideration to organ donors and the National Organ Transplant Act. And then it specifies a few things that are not not valuable consideration, including both of these items, right? Lost wages, travel expenses, some other things, yet they weren't being reimbursed. And I'm interested to know whether you have some insight into why that is, because as you said, we're spending an enormous amount of money on end-stage renal disease already. And so What was the, I mean, was it just some money had not been allocated, so it wasn't done? Was it, was there a theoretical objection? It looks too much like payment. I mean, I'm just sort of, I never quite understood how this fell through the cracks. It seems a very obvious thing in some ways.
SPEAKER_02:Yeah, no, I certainly agree. And there's kind of a mechanical answer of causally why it was not, and a sort of deeper answer about it. So the mechanical answer is that there's a federal program that the Bush administration put into place. It was one of like Tommy Thompson's initiatives when he was Secretary of Health and Human Services to reimburse people. And so the program allows basically to reimburse expenses and initially focused on travel expenses. So that program's called, or it's run by by the National Living Donor Assistance Center. It gets allocated, the number's now going up, but traditionally it gets allocated about three, three and a half million dollars a year. And it only spends 2 million because the requirements of the program are so stringent and it's so limited. And, you know, so there's one question of, you know, legally what we did is we persuaded the Trump administration to issue an executive order expanding who was eligible for that program and what was eligible to also include not just travel, but lost wages, childcare, things like that. And so, you know, one answer of like why it didn't happen, mechanical answer of why it didn't happen before is that, you know, both no previous administration, like the Obama administration, prioritized, you know, wanted to expand this or prioritized expanding it. And then also the agency itself, the Health Resources and Services Administration, didn't put effort into expanding it. And that's also despite there being like pretty strong evidence that the programs saved, like there's papers that try to show that the program saves something like$28 for every$1 of expense, because again, you're spending, you know, a couple thousand dollars, people reimburse people's travel and, you know, you're saving for each transplant, each marginal transplant you get, you're saving something like$150,000. So it's like, okay, so that's kind of causally, you know, it's sort of like no one cared enough or no one did it. But so why is that? So I think it's, I think the deeper answer is that, you know, america does is uncomfortable uh as a government as a society with with public service and with kind of recognizing public service that basically living organ donation is something that um like one people sort of think oh well that's nice but the fact that it's nice kind of makes people uncomfortable a little bit these people wonder you know would they do it themselves and if you wouldn't do it yourself you know does that make you a bad person and i think and so it's so the answer that obviously is no it doesn't make you of that person. Like, no one's obligated to donate to anyone for any reason. But people should be obligated to support donation, right? And I think this goes into the compensation discussion as well, is that people's personal discomfort and their personal, it's kind of like being a vegetarian in a way, where I'm not a vegetarian, but I really admire vegetarians, but a lot of people feel a sort of resentment towards vegetarians. Because, you know, if they're vegetarian, maybe that means I should
SPEAKER_00:be a vegetarian. Maybe I should be, maybe they're judging me, yeah. Right,
SPEAKER_02:right. And I think that that feeling and that instinct is, I think that's sort of like the deeper answer. Now, I mean, like directly, it's the key. I mean, another way of saying this answer is the Health Resources and Services Administration is very incompetent and like they handle organization very poorly where they, you know, we as living organ donors for years since the beginning of Weightless Zero have asked them to support the goal of increasing living donation, which they've been completely unwilling to do. And no one's given, you know, a sort of like, well, who is it that doesn't want to support this? What is the reason for that? And, you know, it's logically Yeah. reimbursing donors' expenses, that's a good thing whether or not it increases living donation, right? It's just kind of like the right thing to do. It's insulting to like be saving someone's life and be forced to pay thousands of dollars to do so. And I mean, I describe it as insulting. Like to me, like it wouldn't have really affected me because I had paid medical leave and I didn't have to travel and things like that. But it really does affect people. You know, most people who need a kidney are poorer and they're more likely to be people of color. They're less likely to be collagen educated, things like that. But people who donate tend to be actually wealthier and more privileged, more educated than average, right? So it's not just insulting. It's counterproductive. And so I think it's due to this societal discomfort with organization. And part of that gets manifested very literally with HRSA, with this agency. And then part of the problem is that organization is like buried in this agency that no one has ever heard of, right? Like I bet maybe, you know, I'd be surprised if 10% of your audience has ever heard of the Health Resource and Service Administration. And it's like the part of that agency, it's in the Healthcare Systems Bureau, which is like the grab bag of like random stuff within this agency. It's kind of a grab bag of random stuff. And so it has like the least public attention on it at all. So even like very obvious steps, like people who are saving someone else's life shouldn't have to pay thousands of dollars to do so. They don't get done. And the thing that's very frustrating, I mean, I'm sure you can hear my anger about this, is that, so, you know, we were able to persuade the Trump administration to do this executive order. And technically, the executive order means that there should be a regulation to actually implement this. It was supposed to be, you know, within 90 days to announce this regulation. It's more than a year later, and there's no final regulation. People are not getting reimbursed. Oh,
SPEAKER_00:you're kidding. I didn't know that.
SPEAKER_02:Right, and it's incredibly infuriating. And the interesting thing is that, I mean, partly there's politics around funding this program so that the House supported funding it and the Senate, the Republicans in the Senate did not support funding it in the last budget. And that's one issue. But the other thing I would mention with this, and it maybe goes back to this thing about honoring, is that Both people who agree that we, or who think that we should pay living organ donors, that we should pay$50,000,$100,000, and people who think that's a really terrible idea, both agree that reimbursing donors is a good idea. Everyone across the kidney spectrum believes that. But the reality is the people who push reimbursement are the people who support paying donors, right? So the major political champion has been Congressman Matt Cartwright in Pennsylvania. He's a Democrat in Pennsylvania. And he's the one that got the money into the House budget. And he's kind of kept this issue alive. And he's very much identified with supporting, at least testing payment for donors or non-cash incentives or things like that. And so it's another, you know, it's true that like both sides of the compensation debate say they're in support of this. But I do think that there's a, for whatever reason, the people who are most interested in compensation are also the ones who are most championing reimbursing donors, even though, again, everyone agrees that's a good idea.
SPEAKER_00:Right, right. And is there a story for why Cartwright has been such a champion? I mean, he's, as you said, introduced a number of bills. And is there a story there that makes him particularly attuned to this issue?
SPEAKER_02:I don't think, I think honestly, I think that, I think there's two things. I think one, I think he has some personal connection to someone who's pro-compensation, but I can't remember who. But also I actually think he, so Jeremy Marcus is his legislative director and has just been like, you know, has been tirelessly pushing this issue. And so I do think it's partly, you know, a thing about how staff opinion matters. And so I think it's partly because it's, you know, it's obviously because Congressman Cartwright is passionate, but it's also because Jeremy's passionate. And he's definitely someone to whom, you know, I can think all living organ donors owe a real debt um and i think you know with with the story with jeremy i know is that i think he wrote like a paper on it um in college or graduate school and just kind of thought like well this is a really good idea um and like we should you know we should do it um so it's it's yeah i don't think it's like a personal connection of um you know knowing someone who died of kidney
SPEAKER_00:got it yeah that's what i were i wondered okay so um i guess just one or two more questions because i do want to make sure we have time to talk about one day sooner for sure um but i guess you know we you brought up compensating organ donors a couple of times, and you and I have talked about that issue before. And so I'm wondering, and you sort of also brought up this uncomfortable relationship between sort of the people advocating for reimbursement or also people who just happen to favor payment, even though, as you said, and that is my sense as well, that literally everyone in this space favors reimbursement, including people who oppose compensating donors. So how do you straddle this in your role at Weightless Zero. I mean, do you worry, like, you know, so let me just assume it may not be true that you thought that compensating organ donors or giving them at least much more than they have now was good, both ethically and would increase donations. Do you worry about pushing that agenda because it would undermine your ability to advocate for other things that are more incremental but would also help?
UNKNOWN:Yeah.
SPEAKER_02:Yeah, I think it's interesting. And it's definitely something that we definitely strategize about. But I've ultimately actually come to the opposite view, so that it's actually more helpful to be more, if we were more radical than we have been in some ways. So basically, the way it was your position on this is that we want somewhere... in between a sort of market exchange idea of paying donors cash in exchange for their organ, and this kind of private gift model that we currently have where donation is just something that's kind of between two individuals. And the reason why, I mean, there's obvious reasons why payment has downsides. You worry that it's going to commodify treating people like a sort of human vending machine, and you worry that it could be exploitative. If only people who are desperately in need of the money were to donate, that could be a problem. So there are kind of downsides there. And then there's also the pure gift model also doesn't work either. And it's not just that it undersupplies, I mean, that's definitely true that it hugely undersupplies and tens of thousands of people die, but also more theoretically, and this gets back to the article by Sally Sattel, Um, it's, it's not, it's, it's non-functional because if you think of the way that gifts work, um, when I give you a gift, it creates a sort of burden or a obligation on your part. Right. I mean, you don't, I mean, obviously you give children's children gifts, but fundamentally people, you know, if you give someone a gift on Christmas or for their birthday and they never give you a gift back, you're going to stop giving them gifts on their birthday. Right. Because it's not, and it's not even just a lack of charity or altruism. It's just an uncomfortable relationship. Right. And with organ donation, it's like, you're giving them something that's literally unrepayable. And that creates all these emotional difficulties for families that do this, or if you need a transplant and not wanting to accept one, different things like that.
SPEAKER_00:That's really interesting, Josh. I mean, because, I mean, I never, that's really a really interesting perspective because one reason that the sort of gift model is so preferred by many people is precisely because it creates this relationship, right? As they view it, this sort of reciprocity that's not present with the cold, hard, marketplace for people who can't see. I'm putting that all in scare quotes. But as you say, you know, the gift model here, it's creating an obligation that can't ever be repaid. And that's a really uncomfortable place to put people in. And that's actually a fascinating perspective to me. I had never thought about that.
SPEAKER_02:Yeah, and I think it's, well, yeah, and I'll get to the sort of difficulties of kind of public communication about some of these ideas, and this sort of point I was making about radicalism in a second, but like, But I think that, yeah, the better model is a model of public service. So at Waitless Hero, what we want to do is have kind of a GI bill for living organ donation and treat donors, you know, the way we would treat soldiers or nurses or teachers or doctors. And, you know, all of those people receive benefits for what they do, right? But you still... It's not just an immediate exchange, it's part of who they are and it's the way we honor them, right? So for living organ donation, what that could look like in the US is like really generous lifetime health insurance and like a stipend each year they do their follow-up, for example. And I think that I got into the field just because I thought, oh, we should just have the government pay every living organ donor$50,000 or$100,000. And I do still think that if I could snap my fingers and make that world a reality, I think that would be a huge improvement over the status quo. But I think politically, that's not possible. And I do think that a public service model is a better model than that. I'd rather snap my fingers and do that than snap my fingers and do the compensation model. But the thing that's tricky is, and what I've found is like, is two things. One, it's complicated, right? And so it's hard to make these public, to make these arguments because like, people are not that interested in organ donation, you know, kidney transplants, the transplant shortage.
SPEAKER_00:See, now everybody I know is fascinated by that. So you just have to, you know, reframe your world.
SPEAKER_02:Like, but from like a... from a, yeah, for whatever reason that the public conversation, it's not like, yeah, people aren't dying to like publish opinion pieces about it. People, yeah, people, people will have stories about kidney donation and, in movies and TV shows, but it's always very one-off and it doesn't connect to anything. And the other thing is because of this family obligation, because of the discomfort with all this, celebrities who get transplants basically don't talk about them very much. It's actually kind of an interesting thing with Selena Gomez. If you Google Selena Gomez, her relationship with her donor has really deteriorated.
SPEAKER_00:Oh, has it really? I didn't know that. I actually saw maybe when she first tweeted out the photo of them together sort of at the hospital. I think that was Selena Gomez. I might not be as up on my pop stars as I should be. But and so I didn't know. But I actually hadn't followed it since then.
SPEAKER_02:Yeah. Oh, here we go. Yeah. So there's a headline in OK Magazine. Selena Gomez is, quote, sick of feeling indebted to. You're
SPEAKER_01:kidding. Oh, my God. The
SPEAKER_02:thing about that. The thing about that for a second is you have someone who's like one of the hugest, most popular, most well-known people in the world. And that story got like no coverage because it's because it's complicated and it's uncomfortable and it's not there's not a clear moral. And so, you know, when you're trying to to make, you know, society is kind of very limited bandwidth for any sort of policy message. So trying to explain this idea of, well, it's like public service, it's not buying organs, it's bad, you know, it's really difficult to do. And so part of me feels like, you know, we've always, and for the last, you know, five or six years, been focused on this kind of health insurance, you know, public service idea, because there can be consensus around it. But what I'm realizing lately is like, part of why that hasn't taken off is because when people hear the idea, they're like, oh, yeah, that sounds pretty And so there's not like, you actually kind of need the sort of controversy and energy to like get something to kind of take off. And so I think in some ways, you know, it would be, it might be better. And similarly for like reimbursement, Again, that's something where Trump announced his policy. It was a good policy, which I don't know if there's a huge number of Trump things that there's a lot of public association with it. And it was covered in the media, but the donation part, the reimbursement part of the executive order was not covered very much. And there wasn't really any follow-up to it, right? But I am kind of thinking lately that paradoxically and unfortunately, like you might need to be more controversial to try to draw attention to like the less controversial piece. But we'll see. I'm going to try that maybe the next year or two and see if that works. That gets anywhere.
SPEAKER_00:Okay, good. I'm glad. Actually, my next question was going to be sort of what's next for you, but it sounds like that's it. All right, so I want to make sure that I have left some time to talk about One Day Sooner, which is your most recent project. And, I mean, talk about something that really took off and got a lot of attention. I mean, did you anticipate that it would become... You're in the news every day with One Day
SPEAKER_02:Sooner.
SPEAKER_00:Yeah,
SPEAKER_02:it's so fascinating. It's complicated. Like, in some ways... So my friend Alexander, who's my program officer at Open Philanthropy, sent me this article, this journal article. Well, it wasn't published then. It was a preprint. But this article about challenge trials and asked if I thought I might want to work on it.
SPEAKER_00:When was that? Was that pretty early on in the pandemic?
SPEAKER_02:Yeah, that was March 24th. And then pretty immediately... You know, I thought it could be like the most important thing I ever did with my life. And, you know, so it's like on the one hand, it's impossible. You know, I've never done anything that got this much attention or this much funding. And that was like this connected to this really important thing. So on the one hand, it was like, no, it's kind of hard to picture that it's going to take off like that. On the other, I did see from the beginning, I feel like I did kind of see the potential of, from the beginning. And an interesting thing about all of this that I've been sort of like trying to wrap my head around is this funny thing where it was like, okay, you know, I said to friends, like, this is like two orders of magnitude, like more publicity than I've ever gotten before. But it's also like two orders of magnitude, like less than you would need for like the average person to have actually like heard of it. Right. Like I had, um,
SPEAKER_00:I live in a bubble. I live in a bubble where people only talk about this, you know, this type of
SPEAKER_02:stuff. That's so crazy making about all of it is right. Like when you're doing it, you're like, oh, the whole, this is like everywhere. And it's on NBC, it's on CNN and the whole world must know about it. But the reality is actually very few people know about it comparatively. Right. Right. But that's like way more than kidney donation, right? So that's kind of this interesting thing we've tried. We've kind of learned to navigate a bit. And the fact, yeah, the sort of public, the media response to it is, it's so fascinating because it's like, yeah, there's times that it's really covered. And there's, just to give like one quick example, So recently, I guess two-ish weeks ago, there was a big story about Fauci announcing that the NIH was going to prepare the challenge virus for trials. And it got covered in CNN and a number of places.
SPEAKER_00:And he was very careful to point out that it wasn't ever going to be used because...
SPEAKER_02:No one wants to, Oxford is the only group that said that. But yeah, Johnson& Johnson and the NIH are saying, oh, well, we're preparing, but, you know. But we're not going to do it, right. And yeah, the private discussions in the NIH might be a little bit different than that public
SPEAKER_00:language. I actually wondered that, whether this was an attempt to sort of push off any pushback that might be coming by saying, we're just preparing, but we're not going to use this. And then later down the road, if some of the vaccines that are in trials right now fail then people who are now opposed might actually have a different views you know if we're still in the place we are a year from now
SPEAKER_02:I definitely don't envy Dr. Fauci's job on any level. And I think, yeah, it's a very complicated series of calculations. But the thing I just want to point out, though, first is that Fauci already had actually announced two months before in a Politico article that they were going to be preparing the virus.
SPEAKER_01:Oh, really? I missed that.
UNKNOWN:Yeah.
SPEAKER_02:Right? So it's funny. And so no one, because it was not framed as this big announcement and it was included in this other article, no one, it didn't become this big thing. And so it's, but there's a lot of things that are like that that, That, yeah, so anyway, learning, being part of this kind of set of public coverage and kind of learning how it works a little bit has really been kind of fascinating and mind-blowing.
SPEAKER_00:Yeah, I bet. So, I mean, I'm interested in the sort of source of the controversy about challenge trials. I mean, I think the reaction of almost everybody, it seems like on first hearing about this, is, okay, we can't, you're not seriously talking about purposely infecting people with the coronavirus, are you? And I mean, I'm really interested. So, I mean, I guess we'll just, you know, have you lay out some of the thoughts and the risks and that type of stuff. But, you know, I sort of, the point in doing that, I would like to be, if we can get to the source of this conversation, reaction from people and whether, you know, sort of what, what, whether it's just sort of a being not clear about what the risks are or whether there's something more to it. So tell me, first of all, let's make sure that everybody knows what a challenge trial is and, and, and who would be, who would be participating in it.
SPEAKER_02:Yeah. So, so what a challenge trial is, is when you deliberately expose research participants to infection and, and order to study a disease or a treatment or a vaccine. They're probably most commonly used for, to study vaccines, but they also like a lot of our basic understanding of like cold viruses or flu viruses or some other diseases is because of challenge trials, right? And the reason for that is you can, because you're, you're observing at the very beginning of when someone's exposed to infection, you can learn all these things about the immune response. And a lot of times that immune response happens really, really quickly, right? And so, and we can't, you know, if you just, if someone comes down with the flu and and then you study them, they actually were exposed a week ago or something like that. So that's what a challenge trial is in general. Now, the idea for COVID-19, so the one thing to know, which I did not know before reading about this for COVID-19, is we do challenge trials a lot, right? That's something that like-
SPEAKER_00:Yeah, I didn't know that either until now, yeah.
SPEAKER_02:It's like, oh, do we deliberately infect people with like malaria in order to learn about malaria vaccines? The answer to that is yes. So with malaria or cholera, if you've traveled, you know, to a country, to abroad, you do your vaccinations, you live in the US, the vaccine you probably took for cholera called VaxCora, that was developed with a challenge trial. That was, they use a challenge trial instead of the usual kind of phase three to determine efficacy. And there are different vaccines that are like that. The typhoid vaccine is like that. There's a malaria vaccine that's being tested called RTSS is like that. So we do these challenge trials. The difference with COVID-19 is that it's more dangerous than we usually do, right? So usually you have a disease like flu or RSV, which is another respiratory disease, which might not have a really good treatment, but which is, you know, can kill people. The flu can kill people, RSV can kill people, but like the risks are maybe a 10th or a 20th or less of COVID. Or you can do it for a disease like malaria, which really can kill people, but which we have a pretty good treatment for. So we give you malaria, we wait three days or two days or whatever it is, and then we give you the treatment and we know that you're gonna be fine. And so COVID is unique that way, but it's also unique in that because it's a pandemic, the value potentially is enormously, enormously high. And, you know, and that's what the name of One Day Sooner comes from is, you know, if you think, and obviously it's overly simplistic to think of the entire vaccine deployment calendar as just, you know, you can just shift it a day or, you know, that's not how it works. But just, you know, fundamentally, If we're talking about maybe something like 4,500 to 5,000 people in the world dying of COVID each day, and you could make, you know, sort of end that one day sooner, that's thousands of lives that would be saved. And so if you look at what the risks of a challenge trial are, let's say two things. First, you know, I do think the fact that people want to participate in them, we've had, I think, 36,000 people, more than 150 countries sign up as wanting to participate. I think that matters a lot, right? It's not, these aren't, you know, you're not imposing this risk on people without their consent, people who want to do this. But if you look at what the actual risk is, to the best of our understanding, and our understanding is imperfect, and that does make this more challenging, it's less than the risk of dying from kidney donation or from dying in childbirth in the US, for example. So the risk of dying in childbirth in the US is about 1 in 6,500. I would say we should feel pretty confident the risk of dying of COVID for the young, healthy people who would participate is almost certainly less than 1 in 10 thousand is probably significantly less. And just the quick kind of math around that is if you look in France, there's an article about COVID in France that was published in Science, and that found that 20 to 29 year olds, both healthy and unhealthy, had about a 1 in 14,000 chance of dying of COVID. And something like 90% of people who do die of COVID have comorbidities, which you wouldn't have in a challenge trial, right? So the idea is, from my perspective, is here's something that even if you're really conservative of what the value could be, even if all you're doing, for example, is figuring out which of the hundred something second generation vaccines we should do for a phase three, or even if it's just about figuring out how long does immunity last, how does immunity work? Even if all that does, you know, I think it's plausible that could shift things by maybe a month, but even if it only shifted things by a day and you had, let's say, a thousand people participate in challenge trials, you know, you probably would avoid anyone dying. You probably would avoid even anyone having maybe severe disease, but the ratio of benefit there, you know, thousands of lives saved for those risks of people who want to take the risk, that seems pretty powerful. So that's kind of the case for or challenge trials. And I can get into in a sec what the case against them is.
SPEAKER_00:Yeah. So let's talk about the case against them because, I mean, people have a very strong, not everybody, of course, but many people have a very strong and sort of immediate reaction to this. And, you know, as you know, I have particular views on these things and I sort of look at it as I suspect you do. And you're like, sure, we're purposely infecting people, but we allow people to engage in risky projects all the time, including during the pandemic, right? And I mean, the thought that came to my mind was healthcare workers who throughout the pandemic, many have had inadequate PPE and people I think rightly thought that they were heroes for working anyway. And the reaction wasn't, oh no, they should stop that because of the risk. And so I guess I'm, I'm just sort of puzzled at, you know, I mean, it's a pandemic and people, and you can talk a little bit more. In fact, I hope we have time for you to talk a little bit more about the motivations of the volunteers, but it seems natural to me, actually, that people would say, I want, I also want to be a hero in the pandemic. And, you know, It's, you know, looking at the risks, it's within, as you point out, it's within the range of things we allow people to do all the time. So, I mean, what do you think then is the source of this sort of antagonism to the idea?
SPEAKER_02:Yeah, I think it's, I think it's a couple of things. So I think like the visceral, the visceral, like if you hear the idea and you're like, wait, like infecting people with COVID, that sounds crazy. And that's like a very reasonable, like initial reaction. And it's probably gets to the sort of, I don't quite know how to put it, like cognitive bandwidth, but it's like, you would think in some ways you would think that being in a pandemic, being in this extraordinary circumstance should make people feel think outside the box and make people more want to try out new things and be more aggressive about potential solutions. But the reality is I think the way people's minds work is that it's so much new information to process and you know that you're gonna have an imperfect understanding. And I think it actually makes people more conservative intellectually in terms of what they, and I think that both is true on an individual level, particularly because like there are other, because it feels like it's associated with an idea of, oh, well, actually COVID's not that risky and people can infect themselves or whatever. And that's very much not our view at all. We think this is definitely a real risk. Again, it's a risk that's in line with other risks, but that's not, you know, having a child is like a very serious life decision, right? Like it's not at all. But I think that that's the place that it fits in people's mental thinking. And it's like, if your first step is just to be like, hey, like we need to realize that COVID is really, really serious. Being like, well, we should deliberately infect people with COVID. Even if there is logically, it's like, well, that's because it could have these huge benefits because of how serious it is. that's hard for people to initially respond to. Now, there is actually polling that finds that people are pretty, that the public is pretty in favor of challenge trials.
SPEAKER_00:Oh, that's interesting. I didn't know that.
SPEAKER_02:Yeah, and so, I'll dig that out to share with you. But then there's a question of institutionally, why isn't there, like, you know, why are, I would say, more bioethicists, there's definitely a very large number of bioethicists, a very large number of philosophers who are in favor of it, but why, you know, the challenge trial, like the median challenge trial bioethics expert is not like gung-ho about these and like, why is that? And then why is Dr. Fauci not gung-ho? And so I think with that, it's a little bit of a similar explanation about people, about the extra risk and the vertigo of the pandemic makes people more conservative rather than more aggressive when even like logically it should be the other way. But I also think that it's about protecting these institutions that exist. And I think there's two, to me, the best arguments against challenge studies There's two good ones, and there's one that I think is not a good one, but I think it's interesting to notice it. So I think one good argument is, what if we do this and someone dies or there's a bad outcome, and it ruins the challenge study field in the future, right? We use challenge studies for all these things that are really important, like dengue and malaria and things like that. And what if we, you know, maybe the risks aren't actually too high, but, you know, there's a whole other set of institutions we need to be protective of. Oh, that's interesting.
SPEAKER_01:Yeah.
SPEAKER_02:Yeah, we can. move fast and that also goes to this broader thing about vaccine hesitancy which is yes if someone were to die in a challenge trial it's not because of the vaccine but the public is going to think oh my god these trials they're killing people we can never participate in a trial we can't take the vaccine things like that um and it's hard to um to quantify like it's hard to to yeah, to quantify like how to take those considerations. I mean, to me, it's like we should do things that are justified on their own and then explain them to the public. I think part of the problem is that like challenge trials normally, no one in the public really knows about them. And so normally it's like, oh, if someone were to die, that's like people's first engagement. But I think if you have a challenge trial, like with COVID, where the whole eyes of the world are on you, you can explain it to the public and people can understand, yes, this is very risky. And like, if someone dies, that's tragic, but it's not, it doesn't indict challenges in general. But the third thing I think that sort of objection people have is like, oh, well, it's not going to speed things up because challenges are going to take, because it's complicated. You have to set them up. You can't just do them tomorrow. You have to do an infectious dosing study.
SPEAKER_00:Right. I keep actually seeing that argument and I sort of feel like it's just beyond my pay grade to really understand why. who's right in this debate about whether it really saves time. Right. I mean, what's your view on it? You've read a lot more on this than I have.
SPEAKER_02:Yeah. And so, I mean, so two things. One is that it's... A few thoughts about it. One is that, like, obviously I am biased to think that it's possible to get these done faster than slower. And people who don't think they're a good idea are biased and think it's slower than faster. And then intellectually, it shouldn't actually affect... Um, like, like, like part of the interesting thing you notice about this stuff is that people's practical intuitions and their moral intuitions are, you can't, you can't separate them, even though logically, I think it makes a lot of sense. And the argument that I, that I've made, um, is look, because everyone agrees we should prepare, right? And so, you know, I've said, look, we should prepare very quickly. And if it turns out that, um, you know, challenge trials are a terrible idea, at least we'd have them prepared and that's, that's good. Um, but if they're a good idea, we want to have them prepared, right? We should actually prepare quickly. Um, but the problem is that like, even though, and so in some ways I can sort of dodge, Oh, is it going to take, be faster, slower or whatever. But the reality is the way people's minds work is like, you can't prepare quickly. And this goes to the, the Fauci announcing in June and making the same announcement in August is you can't prepare quickly in practice if you don't think it's urgent. And if you don't think it's a good idea. Um, and if you think, and so there's that view of, oh, well, it's gonna take too long. In a way, that's kind of like just a rationalization for not wanting, because it makes the whole thing easier, right? If it's not gonna be helpful, you've avoided the trade-off by being like, it's gonna take too long. Now, in practice, I think the estimates that have been given that are saying, oh, it's gonna take a year or two to set up, I think it's very much like the estimate of, well, usually it takes four to five years to find a vaccine. Which is, yes, when you're trying to develop a challenge model normally, you're going to be very slow. You're not going to have any resources. There's all these different things that are going to slow it down. But if you're like working on something really important, you can probably speed it up, right? And in particular, and not in an unethical way, if you, I mean, yeah, I can get into like the details of like how the infectious dosing study works, but basically I think if you look at the assumptions that lead to saying, oh, it's going to take a year or two, it basically is saying like, that you need to wait a month. So the dosing study, let's say it has four parts and it says you need to wait a month in between each of those parts because you only have so many places to do the studies and you need to like clean out the unit and whatever. And if you just have more places, it would be a lot quicker. And so I think that it's sort of like, the proof is in the pudding of like, there's three different groups that are publicly working on challenge studies with Oxford and the NIH and Johnson and Johnson. There's one other group that I think is credible that's working on them privately. I think we will have a, that we'll be doing challenge trials before the end of the year. But, you know, we could be, I could be wrong. We'll see.
SPEAKER_00:Yeah. Well, okay. I mean, I hope that you're right only in the sense that I don't mean I hope that you're right that there's a challenge trial just for the sake of a challenge trial. I hope that you're right that we're preparing for an eventuality in which we might need challenge trials, yeah. Okay, so I know that you need to go and I want to respect your time. In the last few seconds, is there anything you can tell me about the volunteers? I know that you've worked closely with them and have gotten to know many of them. I mean, you know, and as you said, I looked at your counter on the website this morning and it was like 36,000 people or something like that. So who are the volunteers and, you know, what's motivating them to your knowledge?
SPEAKER_02:Yeah. Yeah. So I think that, so the volunteers are mostly younger people, but not entirely. We do have volunteers in their eighties. And there's been volunteers, including a Nobel prize winner, I think is someone in their seventies who volunteered. But I think it's, I think the motivation is, I think the biggest thing is wanting to do something constructive and to feel empowered during the pandemic. I know that's like my biggest motivation for doing it. And I think that resonates with what other people want as well is this feeling of like, look, like I wanna do my part, like I wanna help. And like, I know that personally before I started One Day Sooner and before hearing about challenge trials, I just felt like enormously depressed. Like, you know, it just wasn't like there was nothing I could do. And I, my parents, I was supposed to see my parents for their 40th anniversary in April, which we had to, because they're older, my dad's 79. And we had to, you know, cancel that. And I was worried about their health because I was worried about them taking social distancing seriously. And so, you know, as soon as I started work, and obviously it's a little different because I, you know, I'm working on this full time. But as soon as I started doing that and felt like I could do something constructive, that made me feel a lot better.
SPEAKER_01:The
SPEAKER_02:other thing I'll say is that there's people who have definitely, it's definitely sort of more of like a young professional group, people who are relatively well-educated. And I think also people who have some sort of biomedical background seem to be overrepresented among the volunteers. Basically like people who are interested in medical studies in general. And I think it's kind of just like, yeah, like how do you hear about this or like think it might be a good idea is because you sort of understand it a little bit like, okay, here's of clinical trials were like, here's how, you know, you need 10,000 people. If you only 1% get infected, you know, a hundred people at 80% get infected. Um, I think that's kind of the, the basic logic, um, of it.
SPEAKER_00:Great. Okay. I'm going to let you go because I know that you have another appointment, but I really appreciate you coming and talking to me today, especially because I know you've got so much on your plate right now. But it's been great to catch up with you and to learn more about what you're doing. So thank you for being here.
SPEAKER_02:Thanks for having me. Thank you.
