Kate Bowler: Oh, hey, I’m Kate Bowler, and this is Everything Happens. Look, the world loves us when we are good, better, best. But this is a podcast for when you want to stop feeling guilty that you’re not living your best life. Now, this summer, we’re going to look back at some of the best conversations we’ve had on the show, and today I wanted to revisit the topic of agency. Agency is a word I use like, all the time, more than people want. It describes the degree to which a person has the ability to make decisions about their life, to change it, to control it, to direct it. And we all want a little bit of agency, especially when we’re facing impossible circumstances. Sometimes it feels like we have unlimited agency, like anything is possible. This is kind of like the kind of like tweeeee sound that our heart makes when we feel like we can try. There’s that Churchill quote that says that we are, you know, captains of our souls. And that is the feeling of unlimited agency, unlimited possibility. But then there are those of us who have been, you know, undone by something, crushed by a disease, upended by a divorce, like losing things. Mental faculties. Physical abilities. Frustrating, stymied ambition, things that take our lives apart, or families where it feels like nothing is possible. Or so little agency is available to us. Now some people see an obstacle and then they try to bulldoze their way through it. Others are simply bulldozed. What makes the difference? Today I get to hear from a human bulldozer. His name is David Fajgenbaum. David is an incredible super achiever. He has two master’s degrees and an M.D. From UPenn. And since last we spoke, he co-founded an organization called Every Cure, which helps to unlock the full potential of every existing drug to treat every disease it possibly can. But the road to all those accomplishments has not been easy. When he was in medical school, his body was ravaged by a mysterious illness, taking him to the brink of death more times than anyone should remember. And he is the author of Chasing My Cure. Because in the midst of all of that, he found the cure to his own disease. And we’ll get to that soon. But, David, hello. I am so glad we’re talking again today.
David Fajgenbaum: Kate, I am so happy to be chatting with you as well.
Kate: I loved hearing your, like, all about your life because it feels like you’ve lived a thousand lives, so they say. You have had so many aspirations. You played quarterback at Georgetown, you had a gorgeous girlfriend, your life was on this trajectory of success and endless possibility. But then when you were 19, your mom got really sick. Can you tell me what happened?
David: Sure. So, just as you said, I, was a couple weeks in at Georgetown at that time, had just gone off to college, and I received the news from my dad that was just totally devastating. And that was that. My mom was diagnosed with a terminal brain tumor, and it just totally, as you can imagine, just totally upended my life. And I went from this, I guess young and optimistic and energetic football player, who kind of had one view for the world, to being so devastated by my mom’s diagnosis.
Kate: Did it change your view of, like, what you felt was possible after you knew that like, something that awful could happen to someone you love so very much?
David: It did. It was it was tough for me because not only was it something so bad happening to someone I love so much, it was someone who is just so good. And everything about her was just she lived for other people. She was basically an agent for good. That’s like, that’s who she was and what she did. And so that was really hard for me.
Kate: It does sound like her hospitality, like her amazing generosity is something you inherited though, because I just I see how you immediately take what you do and like make it a gift for other people.
David: Well thank you. She definitely taught me that we really have a responsibility to to do what we can in the time that we have. And I think that, yeah, I don’t know if it was inherited or if it was just that I got to watch the Ultimate Giver, you know, day in and day out for eighteen and a half years in my life, that it’s it’s definitely been instilled in me. She was an amazing person. And, and even after her passing, I just felt like I needed to continue her legacy in some way. And so I started an organization in her memory called AMF. My mom’s name was Anne Marie Fajgenbaum and we named this group AMF after her initials, and it stood Ailing Mothers and Fathers and now it stands for Actively Moving Forward. It’s a support network for college students dealing with the illness or death of a loved one. And I think it’s it’s really the ultimate embodiment of her. It’s it’s connecting young people who are having a hard time with other young people to be shoulders to lean on.
Kate: Wait. You went from being like a 19-year-old human Tigger who played quarterback to, like, opening a grief network.
David: For me, my life just went from football, football, football to grief support. And I just want to be a cancer doctor because I want to treat people like my mom.
Kate: Yeah, maybe because I don’t know that many unbelievably athletic people, David. But like, I saw the photos of when you were like, superhuman giant football man. And you’re like, it’s such an incredible, like dichotomy of what you experience next because you’re you’re like winning bench press competitions and like, you’re working out all the time. And then you start to have these mysterious symptoms. And I, I’d love to hear like how you like how you first understood what was happening to you and and where you thought that might take you.
David: Over the course of just a couple of weeks, I went from being totally healthy, like you said, literally winning bench press contests because I was in such good shape, to feeling more tired than I’d ever felt before, noticing fluid pooling in my ankles, noticing lumps in my neck that I didn’t know what they were at the time. And, I got really, really, really sick. I was so sick that at the time I finally went to the emergency department. I really wanted to take this one medical school exam because I because, I guess I don’t know why, I’m crazy, I guess, but I really wanted to make it through this exam. And then then I’d go get checked out. So I kind of limped, for my medical school exam ,down the hall to the emergency department, and they ran a series of tests and they said, David, your liver, your kidneys, your bone marrow and your lungs are shutting down. We have to hospitalize you right away. And within a couple of days, I got critically ill. I had a retinal hemorrhage that made me blind in my left eye. I gained 70 pounds of fluid due to my liver and kidney failure, and I needed a feeding tube and basically required daily transfusions to keep me alive, all with no diagnosis.
Kate: You and your loved ones actively prepared for your death. What happened?
David: Kate, it was 11 weeks of of just kind of pain and fear and suffering and and just reflection. In the hours that I would be awake during the day, I would reflect on my life because I, I knew that I was not going to survive. And the doctors knew that I would not either. And actually, at one point, when I was really at my sickest, 11 weeks in, the doctors told my family that that they should say their goodbyes. I don’t remember too much of that experience because I was so sick. But I do remember reflecting back on my life and thinking about what I had done, what I hadn’t done. And I remember that the things that I regretted actually had nothing to do with things that I did do—what I really regret for the things I didn’t do or I didn’t say, and in particular, what I didn’t say to to my prior girlfriend, Caitlin. We had dated for a couple of years from college and had broken up about six months before I got sick, and I specifically remember not fighting for our relationship and saying to myself, well, it’s okay, we’re 25 years old. We have all the time in the world. If it’s meant to be, it’s meant to be. And then there I was, on my deathbed, having my last rites read to me and realizing that I would not have more time, and that I wish I had spent this last six months with Caitlin. And that I wished that I, that I could have a life with her and that we could have a family one day and just being totally devastated.
Kate: Yeah, yeah. Yeah, that makes sense to me. There’s like a different… The loss of potentiality is like such a big and intense loss. Like not in the abstract, but right when you’re picturing someone that you would never be sick of.
David: She might be sick of me at some point, but I would never be. That’s right.
Kate: I know it’s tototally dumb, but there’s this line in a movie I loved where, like. Someone just said. “Oh, what I would have given to have tired of you.”
David: Wow.
Kate: And like, I felt that too, when I was in having my hospital moment where I was just, like, looking at my husband and thinking about my kid and thinking like I would give anything to get really, really sick of you.
David: And he’s pretty awesome, I know Toban. So I can I can see why you’d say that.
Kate: Yeah, I imagine that must have been so hard to toggle both, like the medical side of your brain— you’re such an incredible synthetic mind. And then to be simultaneously processing all the personal loss and then just the helplessness of being a patient.
David: And even worse, what was I think maybe most difficult for me was that the medical system that I had bought into when I was, you know, halfway through my medical training, was also helpless and was also unable to identify a diagnosis. But thankfully, right around, actually, within 48 hours of having my last rites read to me, the diagnosis was finally made of idiopathic, multi-centric Castleman disease. And because we know so little about the disease, the only treatment at the time was chemotherapy. And so I was given immediate chemotherapy with the hope that it would be kind of a last ditch effort to save me. And and thankfully it did. And thankfully, about a month later, I was able to walk out of the hospital at Duke.
Kate: Yeah. Even when things were absolutely awful, joy still crept in. What would you say to someone who’s not sure that it’s okay to laugh?
David: My dad and I decided to take a walk around the hematology oncology floor at this this hospital. And it late that night on New Year’s and we passed by a gentleman who had been clearly drinking on New Year’s Eve. He was, like, swaying in his chair in the family waiting area. And in our next lap around, we saw that he had fallen onto the ground. And so my dad ran over to him and helped him back into his chair. And he looked at my dad and I, and I should, I should mention that I was carrying an IV pole with me, and I had a huge belly because of my liver and kidney failure. And I was I was bald from the chemo. And he looked at my dad and I and he said, “Thanks so much, good luck to you and your wife.” And we were like, wife? and then I looked at my belly and I realized he thought I was my dad’s pregnant wife. And we laughed so hard, Kate. I mean, I, I like, almost fell on the floor. I was, I was laughing so hard and I turned to my dad and said, “Man, you’ve got an ugly wife.” And we just were like, floored. And I think that it’s those sort of moments where, you know, I was getting misgendered as my father’s wife. Like there’s a lot of reasons that could have been particularly complicated. But I was so happy to be alive, and we just laughed so hard. And I think that during really tough times, not to say that there’s always like, you know, something to laugh about, because truly, there are some times where there was nothing to laugh about. And you know this all too well. There are times where the only thing you can do is cry. But I think there are these times in between where where it feels like the only thing there is to do is to cry. And I probably could have cried, you know, when I got confused as my dad’s pregnant wife. But but I think that you can, I think that sometimes if you can find some positivity and some humor in it, at least for me, that that made me feel so connected to my family.
Kate: Yeah, totally. But also alternate theory, you’d make a beautiful woman. So I think I think both possibilities are open. I’ll make sure there’s photos of you in the show notes, so people can just kind of weigh in on that. Don’t worry. I’ll send you the results.
Kate: Don’t go anywhere. We’ll be right back after a few words from our sponsors.
Kate: I’m just thinking of how intense it must have been to finally have some more language around your diagnosis, but then start to realize that that didn’t mean that there was a cure.
David: After the first six months of being sick, the first thing I did was reach out to Caitlin and to and to try to to get back together with her and to tell her that, you know me taking me, just believing that it would work out at some point in the future was just the wrong approach in that, and that I wanted us to be together. And it was such an important priority. And thankfully she she felt the same way. So Caitlin and I were dating again, and, I told my dad, my sisters and Caitlin, I’m going to dedicate the rest of my life to trying to identify treatments and maybe a cure for this disease. And, I remember, you know, the look in their eyes that they obviously they gave me kind of a, like, a half smile, like, you know, “You got it, Dave, we believe in you.” But but they, they were just so terrified as to whether I would make it through the next day.
Kate: Yeah. It sounds like it was like a whole family, all hands on deck kind of thing. Am I remembering it right that at one point, your dad was like having a regular phone call with the director of the National Institute of Health?
David: Yes, it was Tony Fauci who, of course, everyone now knows. Oh, and, the best part about this, Kaid, is so my dad got Tony Fauci’s cell phone number from a from a family friend, and the assumption was that maybe my dad would call Dr. Fauci, maybe, maybe once, you know, give him the story. Well, by the way, you would love my dad. He’s got like, he’s like the most extroverted person in the world. And he’s, he is a bulldozer for sure. And, and he’s not a very eloquent bulldozer. And so he would call Dr. Fauci every day for three weeks while I was in the ICU. And he didn’t know that it was Dr. Fauci. He just knew it was some guy named Fucci. So my dad would say, hey, Fucci. And he would just run through all the lab tests and the clinical features, and he would he would go through every day and update, and Tony Fauci would spend 30 to 45 minutes on the phone with my dad every day for three weeks while I was in ICU. My dad never called him doctor. My dad never knew who he was, and I got out of the hospital literally months later and I was like, dad, I have this memory of this, like, Fucci, like, what is Fucci? And he was like, oh, yeah, I was calling this guy named Fucci at NIH. I don’t know who he is. And so I like Google, Fucci, like F-O-O-C-H-I and Google corrects me and says “Tony Fauci” and then corrects me further and I learned that he has a Presidential Medal of Freedom. And I was like, oh my gosh, Dad, you were calling up Tony Fauci. He goes, “Oh yeah, that sounds right.” And I’m just, hh my gosh.
Kate: I love that for so many reasons. Partly it’s also explaining you to me right now.
David: A little bit, yes.
Kate: I’m so glad you talked, too, about like those moments of intense uncertainty because that’s, I know a lot of people who listen to this podcast have either experienced a lot of uncertainty themselves, or they are used to standing with those who do, where you just, where there’s really actually is actually no ground to stand on. And if you don’t mind, I’d like to read a passage about how you described experiencing that where no one is actually standing there with you, not even your doctors. You write, “I knew the language that doctors use. The careful truth-telling. The hedging, the open-endedness. I’ve spoken that language before. Now that it was directed at me, it didn’t feel nearly as careful or open-ended as I’d once assumed. Instead, the words felt like they were casting me out of the room, out of the hospital entirely. I’d been consigned to the plane of possibility. Anything was possible because no one knew. I was on my own.” That’s so beautifully put. This like, world without landmarks anywhere. That sounds exactly right.
David: And it was so terrifying. And I think that, you know this all too well, Kate, that, we just want answers from our doctors. We want, we want to know, with certainty, you know, percentages at that point in my journey, where I wrote that passage, it was where I was sitting in my hospital room, and I was actively dying for the fourth time, and, I was so sick. And that’s when. And I’d been on this experimental drug before, before this relapse. So clearly the drug wasn’t working, and, and I was asking all the right questions to my doctor, you know, what else is there out there? What sort of leads are there? Who’s working on things? They were all the questions that I should have asked earlier, but I was too afraid to ask because I didn’t want to actually know the answer. I wanted to pretend that there must be other drugs. I wanted to pretend that there must be promising research, and I’d kind of put those things out of my mind. But then when that drug no longer worked, I needed to now find out what else was there. And my doctor just kept saying, no one knows. And it was no one knows to information about the disease. But it was also was that, no, there are no more drugs in development. And, it was absolutely terrifying.
Kate: I’m just kind of blown away, though, by your, by your gut instinct to like, like, step forward. Like, no matter what, you just like you push in. Because I know you cycled through this unreal move from life to death to life to death to, like, almost dying over and over and over again until like all, all the while realizing that there’s no there’s no cure or adequate treatment in the works to save someone like you. And you write, “I couldn’t accept living in between almost dying.” Unbelievable. Just like, you just decide that, like, you’re going to get to work.
David: If I’m going to survive, I need to find, I need to basically create knowledge that doesn’t exist today. And I wasn’t foolish in thinking that, like, I could do it. In fact, I didn’t think that I could do it. I mean, a) I didn’t want to. I wanted there to be a solution. I was kind of like, oh my gosh, I wish I didn’t have to do this in two. It was, I’m not going to do, in all likelihood, I am not going to find anything that’s going to help me or help anyone else. But if I don’t try, then I know what my outcome’s going to be. My chances may be less than 1%. But, you know, but you’re telling me there’s a chance is basically the way that I was looking at it. And, and so then I just dove in full speed.
Kate: David, I don’t mean for this to sound, flippant in any way, but when you say, “So, you’re saying I have a chance? Does that also remind you of the Dumb and Dumber moment?
David: I was 100% referring to Dumb and Dumber, and I wasn’t sure if you were going to pick up on that. And that was going to be…
Kate: That’s so funny because, like, when, so, reading your book, you know, we’ve had dinner and, like, I just absolutely adore you. And I’ve been thinking about your unbelievable capacity for hope. And I literally wrote down here the moment in Dumb and Dumber when, like, one character is being rejected by a woman who says the chances of them ending up together are, I quote, “1 in 1,000,000,” to which he replies breathlessly, “So you’re saying I have a shot?” And it struck me, honestly, while I was preparing for this interview, that you really talk about hope in the same way. You look at insane odds and you seem to always say, so you’re saying I have a shot?
David: I mean, I don’t think I’d ever made the total connection to that and Dumb and Dumber, but, but but Dumb and Dumber might actually be an appropriate way to describe my outlook on odds and on, I think it is… And I think it was from my experience with my mom and knowing that, that I couldn’t just hope and I couldn’t just pray, I would need to hope, I would need to pray and I would need to act. And I think so often in life there’s this kind of it’s either or. It’s either you hope and pray or you take action. And I think that I think they need to come together. They need to work in parallel. We need to reflect on what we pray for, because whatever we’re praying for, that means it’s really important to us. And, you know, oftentimes we have the agency and the power to actually be a part of of making that which we’re praying for become a reality.
Kate: Yeah, yeah, yeah, I like that, I like that, I, I know that I flip flop sometimes between feeling, like, hyper agency? So like an inflated sense of what I can do. And that’s mostly just out of fear. Or hyperpassivity because I’m overwhelmed. I’ve had too many choices. I’m tired, you know. It’s hard to to carve out that that place in the middle you’re describing where we can move forward faithfully, but we also know how to account for our circumstances. We don’t just assume things have to work out just because, especially when the stakes are so high. I mean, you’ve just had this so many times in your life where all the best things are worth fighting for, and the decision either gets made for you or there’s only a small chance. And I think it’s especially knowing how much you lost with your mom that I’m just I’m so blown away that you decided that, that you’d be a person of hope. It’s really. It’s really spectacular.
David: Oh. Thank you.
Kate: Okay. One sec, we’re going to take a quick break. We’ll be right back.
Kate: So you studied and wrote papers and developed collaborative research that ultimately led to you discovering the cure for your disease. What the hell, David? That wasn’t a question. Just, what the hell?
David: So. So, yes, I’m literally, you know, alive and talking to you today. Thanks to a drug that, had never been used before for my disease, that I was able to identify from research I did in my lab. And thanks to this amazing collaborative network of people.
Kate: So can you talk to me about the logistics of how you found the medicine that has kept you alive right now, something you call drug repurposing?
David: So there are 7000 diseases that don’t have any drugs, and there are 1500 drugs that are approved for other conditions. And many of those 1500 drugs may actually be able to work in the 7000 diseases without any answers. And I’m I’m a living example of one of those. So you basically take a drug that had initial purpose, and then you repurpose it and use it in another in another disease. And that’s an approach that I think is probably our greatest opportunity for many rare diseases. It’s unlikely that a drug companies can develop a new drug for every one of the 7000 rare diseases. It’s a lot more likely that some of those drugs that are already approved might actually also be able to help, diseases without solutions. And so there’s something we’ve been pushing for, for, you know, about 50% of patients now can benefit from the two drugs, that I’ve been a part of identifying. And we’ve identified now a third drug that we’re hopeful is going to help the other 50% of patients. But, but there’s still work to be done. at the very beginning of my journey, I was okay with no agency. And then I kept finding out, I want more and more agency. I want more and more control. I want to be involved. And then the final decision that I had to make, you know, do I take this drug or not? I wanted to punt it to someone else, Kate. I didn’t want to have to be the one to make that decision, because there’s something really nice about when your doctor walks in and she says, this is the drug we’re going to give you, and then you’re going to get better, and then we’re going to do this scan. And then if something changes, we’re going to give you this. And when she gives you that sort of a plan you say, yes, this is what I’m looking for.
Kate: Yeah, that’s my plan.
David: Exactly. But there’s something so scary about saying, wait, I can’t like, look at someone else’s diplomas and feel confident that they’re going to make the decision I have to. I’m making the decision today. And what if I got this wrong? What if my interpretation of this one experimental result was incorrect? And then it becomes so hard to to make a decision like that. And sometimes it can be paralyzing. But Caitlin and the prospect of of just making it to our wedding day wasn’t some sort of grand plan we’re going to live forever together. But just that aspect was enough to to give me the courage to make the decision.
Kate: Yeah, that sounds right, David. Like the feeling at some point, like we have agency, like we we have all the get up and go, but sometimes it’s love that can pull us toward the future, or at least the possibility of imagining a future at all. I think it’s also a place of real hope, too to give language to the fact that a lot of solutions to, to terrible and abiding pain are structural. If you’ve been a champion of organization in which people had to put their minds and their institutions at work toward a common cause. David, I’m so grateful we’re friends, and I love knowing that at any moment you are out there turning hope into action. But let’s be real. I know we should all be right out there with you. Thanks so much for being here.
David: Thank you so much, Kate, and thank you for being a part of turning hope into action through your podcast, through inspiring people all the time, through sharing other people’s messages like this one. It really means the world to me.
Kate: Oh thanks, friend.
Kate: Since we last had this conversation. David just went full force with his hope forward attitude, and he co-founded an organization called Every Cure. I caught up with David recently, and here’s what he had to say about it.
Kate: David, you continue to be this absurd spark of joy in my life as I watch you bulldoze every obstacle. You are—I know that you’re a human being and you can have problems, etc. in your own personal time—but in my mind, you are the embodiment of someone who has decided to try to find a way through structural obstacles. And I just feel so lucky that a) you’re my friend and that b) you’re back. And we get to talk about everything that you’ve been doing.
Kate: Well, Kate, the feelings are so mutual. I feel the same way about you, and I’m just so happy to be on be back on with you.
Kate: You’re the easiest person to be on your team. Since our episode aired you co-founded an organization called Every Cure. Tell me what is behind the impetus of Every Cure?
David: Sure. So you know I’m alive because of a drug that wasn’t made for my disease. As you know, I was so sick with this disease called Castleman’s, I had my last rites read to me, nearly died five times from it. And then all of a sudden, I found this drug that had been around for decades for other diseases. And it saved my life. And it actually, in January, I celebrated ten years in remission. And so, right, Kate, it’s like crazy, right?
Kate: Ten years! Holy crap, that is a decade. Of like, you being a dad,yYou being a husband, you being like a life changing researcher. That’s… What a gift.
David: I know. For the first time someone said it’s a decade, I was like, oh my gosh, I used to measure my remissions in months and now I can measure them in decades. And so you can imagine for me, Kate, being on a drug that wasn’t made for my disease and literally being alive today because of something that wasn’t meant for me, all I can think about is how many more drugs are out there that could help more people. And so, yes, I spent the last ten years here at Penn, repurposing drugs. We’ve done this now 16 times finding a new use for existing drug. But then two years ago, we launched Every Cure because we believe that every FDA-approved drug should be used for every disease and every patient possible.
Kate: It’s a weird economy, and I think that’s why I always feel so relaxed in front of you is for people inside of health care, for people who have tried to navigate it successfully or unsuccessfully, like we know that there are like, green lights and red lights that allow us to sometimes do what’s really in patients best interests, and sometimes really have to just mostly line up the financials and the incentives. Like, how do you think about Cvery cure as a way to kind of bridge some of those gaps?
Kate: That’s exactly why we created every cure. There’s 3000 approved drugs, and 80% of those drugs are generic, which means that they’re not profitable for companies, which means that 80% of the drugs that can help you, Kate or can help me, no one’s doing any research on. And that just blows my mind. And so so that’s why Every Cure exists, is to take those drugs, the 80% that no one’s researching, and then take all of the diseases, which actually there’s thousands of them that don’t have treatments and then matching them together. Let’s take the drugs we have within reach and match them to the people who are suffering right now.
Kate: You said something that really stuck with me about just wishing that there was a there, like there was a somebody out there who was thinking about us. And I don’t know, that that always struck me in such like a place of like deep sadness. Is like, but is really nobody’s thinking about, like does my “thing” not rise to the surface of being important? And you have such like a, it’s such like a deep calling. You have to all these people who have been kind of left behind, who have been left behind. There is no them. That them is, I forget how you described it one time. You were like, I think it’s just going to be me then.
David: Yes. It was just at one point I was like, they must have looked at that drug for Castleman’s. And then I was like, wait a minute, is there a they out there? And then I’m like, I’ve been saying they must, you know, we say they all the time in our society like they must have done this. And it’s like they did that as like, wait, is there a they? And then all of a sudden I learned that for the vast majority of diseases, there is no they. And then I was like, well, maybe we need to create a they. So Every Cure is they and we are them and we’re trying to find drugs for diseases that don’t have any treatments.
Kate: When you talk about AI, I feel less terrified. I feel mostly concerned about AI, but you’re using it in this really innovative way. Can you explain it to me in a way that a humanities person will understand?
David: Sure. So it’s amazing—3000 drugs that humanity has created, and there’s 22,000 human diseases that that affect all of us. You and I have a have a couple of those 22,000 diseases. And so we are looking for matches between every drug and every disease to see among those 3000 drugs, what are all the diseases they might treat? And so there’s 66 million scores that have to be generated. It’s 3000 times 22,000, right? So no human could ever say, like, I’m going to generate 66 million scores, but utilizing artificial intelligence, we do that. And the way we do it actually is we use an algorithm almost identical to Netflix. So when you go on Netflix to decide what you know, show you might want to watch, Netflix tells you these are like the five shows you might watch. And Netflix is really good. You’re like, oh my gosh, that’s great, you know, I love that show.
Kate: I think I would never definitely watch that.
David: I would and then you watch it and you’re like, I love it. Right. And so the way that it does that is that Netflix use something called a random forest model. So basically it’s created a profile for you. It says, this is Kate’s profile. And then it creates a profile for each of the movies. All the ones you’ve watched are the ones you haven’t watched and says, this is the kind of movie that Kate’s going to like. So we utilize a random forest model just like Netflix, but we look at every drug and every disease, to say this drug tends to work for this disease, so it has a profile like this. What are other diseases like that other disease? And we make connections. So now we can come up with 66 million scores within a couple of days as opposed of course, it would take us years to do that if we were doing it manually.
Kate: These scale issues are so wild when it comes to the complexity of our diseases. That’s so exciting to think about problems as clusters rather than because to us they just. I mean, I’m sure you didn’t, you’d never use the word Castleman’s before, it became, like, the most important noun in your life.
David: You’re exactly right. Yeah. To your point, the scalability is impossible for a human, but all of a sudden, artificial intelligence can actually scale these sorts of concepts in ways that we just couldn’t.
Kate: We have these clinical trial models that go like, whatever is good for the group is going to be what’s best for everybody. And with all of the, you know, advances every day in what we understand about genes and these like and of one groups that we can make modifications for. I mean like just this last week I think that I’m right there was I mean, there was a study that was published about the cure for sickle cell anemia, like. Yes. What the what? Like no one at no one thought you could cure that. And I just, I, it’s kind an exciting time to be really hopeful.
David: It is. And, you know, you and I have talked about hope a lot over these years and how hope can be so powerful. It can also be paralyzing. It can also be, you know, you can drive us to take action. And I think this is one of those moments where we can be really hopeful for all those reasons. You know, there’s people doing work, there’s, you know, maybe this solution is going to be delivered to us. It’s a really special time.
Kate: One of the saddest thoughts I would always have is just feeling that the second I learned more about what was wrong with me, the more I realized that I didn’t know and it was always overwhelming. And like lately, I’ve been trying to be my own geneticist and it’s like, such a disaster. It’s just a disaster. I, like, figured out where the like the search engine is and have, like, none of the none of the letters in the right order. And it gets really overwhelming for all of the non-specialists of the world in any kind of problem, to look at something that’s so complicated and I just… You’re you and your, like emotional bandwidth. You just like, you see a terrible problem and your heart just like, opens, which is, I think, honestly, one of the most, it’s such a beautiful thing to see up close. It’s why you’re such a little miracle. I wonder, for all those who are like overwhelmed by a problem in their life, and they don’t, they they can’t be the ones to generate the tools to solve it. What are some of the emotional tools that you use to kind of stay open to a yet unsolvable problem?
David: Such a such an important question. First off, I should say that, what you just described is, how I describe my mom, you know, who passed away from cancer 20 years ago, and, she, she would talk about this idea of we shouldn’t just look for silver linings. We should look to create silver linings. So meaning that, like, when the horrible things happened, like, that’s when you should go do create, you know, take action. There’s three things that I, that I think about a lot, in these tough situations. So, so one, I try to reflect on what am I hoping for, wishing for, praying for, like, what is that thing that you want to occur? So that’s sort of the first thing. The second is, who can I have by my side? So for me, it’s Caitlin, my amazing wife. Or it’s my sisters and my dad. Like, they’ve just been there for everything. So it’s, you know, how can I sort of have the right people? I’ve got my vision in the future, got my people on my side. And then for me, it’s just the cliche, like, one step at a time, right? But I think it’s a cliche because it’s true. And so one step at a time might be different for different, you know, for different people. Right? It’s like my one step at a time might be that I might be looking to try to find a signature for a drug that might be in my, you know, maybe treat me based on some proteomics data I generated. But it might be that your one step at a time might be, to your point, calling a few different doctors because you, the first couple doctors actually weren’t the right doctors for you. Maybe it was a third doctor. And so, and every one of those action steps is so important. And so I think that I guess I would encourage just reflecting on what you’re hoping for, reflecting on what you’re praying for, asking what can you do to try to achieve that thing that you’re hoping for, but not necessarily putting all the weight on your shoulders to have to be the one who’s doing it?
Kate: That’s so good. That’s so good. Because I know that when I get stuck, I often feel like either just there must be something I’m doing wrong. And usually, I mean, I’m a smart. I’m a smart person. I say to myself quietly in these moments. But usually it’s because I realized, like a door was locked and I need to try a different door instead of just like immediately turning daggers in, you know, on the problem that I’m facing. But like, I don’t know, even this last week I met a new person in the health care system, and the door just opened and I thought that door was closed. I mean, because I’ve tried it 100 times, David. I’ve tried it 100 times. And so, like. I just really admire, I really admire all the moments where we just decide to like, keep knocking. Keep trying. Keep being less hard on ourselves for not knowing why we haven’t found a solution yet. You’re just. You’re so good at helping people try, David, and I just, I cherish the crap out of you, so.
David: Well, it’s very mutual.
Kate: David’s story is about hope. But what I heard sounded like two kinds of hope. Hope that doesn’t wait. Hope that anticipates and moves into the possibility of a beautiful future. Even when it may seem like a 1 in 1,000,000 chance. It was hope with running shoes on. But he said something else I loved when he talked about his wife, Caitlin. He said just wanting to marry her made him hope. Seeing their wedding day months down the road gave him the courage to ask hard questions and do something difficult and painful in that moment. He was pulled into the future, pulled into hope by the sheer force of love. We are living in awful and uncertain times, and I know that hope feels like a strange word, but what David was calling us to was hilariously and wonderfully not to just sit around waiting for the cure we need. We need to look into our own lives and ask, who is waiting on me to act? Who might be waiting on me to help a little more? Maybe it’s your kid in the other room doing math right now. Maybe it’s your mom needing a Skype call. Your patience or your customers as you step out the front door to encounter a scary world. But thank God for you, when in acts big and small, you put your shoes on.
Kate: This podcast wouldn’t be possible without the generosity of the Lilly Endowment. Huge thank you to my team Jessica Ritchey, Keith Weston, Harriet Putman, and J.J. Dickinson. Okay, but for real. Come be human with me. Find me on Instagram or Twitter at @KateCBowler. This is. Everything Happens with me, Kate Bowler.
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