The Jordan Harbinger Show - 1005: David Fajgenbaum | Leveraging AI to Cure Rare Diseases

Episode Date: June 18, 2024

After treating his own rare disease, Chasing My Cure author David Fajgenbaum explains how existing drugs can help other sufferers survive the unknown. What We Discuss with David Fajgenbaum: Dr. David Fajgenbaum nearly died multiple times from a rare ailment called Castleman disease, for which there was no effective treatment available. The current healthcare system does not incentivize pharmaceutical companies to find new uses for existing drugs, especially for rare diseases, leaving many potential treatments undiscovered. Driven by his own experiences, Dr. Fajgenbaum realized that many existing FDA-approved drugs could be used to fight rare diseases for which they weren't originally intended. Dr. Fajgenbaum founded Every Cure, a nonprofit organization that uses AI to match existing drugs with rare diseases they could potentially treat, greatly accelerating the process of finding cures. You can make a positive impact by supporting organizations like Every Cure, which are working tirelessly to find treatments for rare diseases using innovative approaches. Consider donating to their cause, spreading awareness about their mission, or even sharing your own experiences with off-label drug use that has helped you or someone you know. Every contribution, no matter how small, can help bring hope and relief to those suffering from rare diseases. And much more... Full show notes and resources can be found here: jordanharbinger.com/1005 This Episode Is Brought To You By Our Fine Sponsors: jordanharbinger.com/deals Sign up for Six-Minute Networking — our free networking and relationship development mini course — at jordanharbinger.com/course! Like this show? Please leave us a review here — even one sentence helps! Consider including your Twitter handle so we can thank you personally!See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Coming up next on the Jordan Harbinger show. I had this idea that there must be this group of Santa's elves who are working on every disease, they're collaborating and they're working to all the other elves, and they're going to deliver a treatment for your disease. And I actually really did believe that there were collaborative teams working on diseases, but then all of a sudden I got into it, and I learned like, it is just such like just a shit show, frankly.

I mean, there's just people in all over places that aren't working together, and it's just like it's totally uncoordinated. And as a result, you end up not having treatments for all these diseases. Welcome to the show. I'm Jordan Harbinger. On the Jordan Harbinger show, we decode the stories, secrets and skills of the world's most fascinating people and turn their wisdom into practical advice that you can use

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Quick reminder, Google Podcast is closing internationally. It's already closed in the United States. Go grab an app like CastBox if you want to continue to be able to get skeptical. Sunday and Feedback Friday that for some of you are not showing up in YouTube music or the YouTube app. Today, an incredible story with my friend Dr. David Fagginbaum. This guy, man, where do I begin? His body basically just started shutting down. He almost died. They couldn't even diagnose him. Turns out he had an incredibly rare uncurable terminal disease. So he gets to work on finding his own cure and succeeded. Now he has dedicated his life to finding cures for rare diseases using drugs that are already FDA approved for other uses. Really incredible. This might sound like a

depressing or technical conversation. It really is not. Somehow David and I, we just fell into report immediately and really had a great time chatting. We kept it light. There's a lot of joking around. This story and David's work is incredible and worth knowing about. All right, here we go with Dr. David Fagginbaum. I think a decent hook to start the show might be, and hear me out here because I think, well, it's actually fortunate, and I'm using air quotes that people can't see on the podcast here, but it's fortunate that you ended up with a rare, incurable life-threatening disease because if you hadn't, I know people are like, whoa, things wouldn't have turned out how they are so far. And I know that makes me sound like an a-hole here, but let's see if I

redeem myself later in the show. So I want to back up because I don't want to, let's leave that as a nice little cliffhanger where people are like, wow, Jordan's really digging his own grave in this episode. Where were you in life when the whole disease kind of thing kicked off when the story began? Sure, I was a third-year med student and I was working towards becoming an oncologist. One day my mom had passed away from cancer when I was in college. So I was like on fire to, you know, everything I could to try to treat cancer patients, come up with drugs for cancer patients. And then out of nowhere, I just became critically ill. All my organs shut down. As you know, I was in the hospital and the ICU. Had my last rights read to me. And of course, you know,

no one thought that it was even possible that I could survive. Man, so your first clue that something was wrong seems to have come pretty early. Because I know you were studying in medical school, and I know from law school, you just, my friends are doctors, you burn the candle at both ends. It's not that unusual to feel like absolute ass for weeks at a time because you're like, well, I've slept for three hours a night, and I'm living on Red Bull and, like, cafeteria food, and I picked up smoking or whatever, you know, like, who knows? You've got all manner of bad habits.

And then you're also like, but I go to the gym every day for three hours, right? So you're just trashing yourself. Yeah. Did you ignore it at first? I did. I am just, all the things you said were pretty much true, except for the smoking. Well, yeah. I was drinking a lot of caffeine.

I was taking caffeine pills. I was sort of doing anything I could to try to get my energy up. And that was just what it's like to be a typical med student. Yeah. But then the fatigue hit me out of nowhere. And it was like, I mean, Jordan, it was so bad that I would see a patient, see a patient in the room. I would find an empty hospital room, and I would set my alarm for seven minutes from the time that it was so I could sleep for six minutes, and then I would wake up and go to the next room.

Then I'd find another room, sleep for six minutes and go to the next room. I did that, like, throughout the course of the day, just so I could, like, make it room to room. It was this fatigue that sort of, like, basically impossible to describe. Yeah, that's awful. I mean, you hear that about residents, though, right? They're just totally over. I mean, you hear about from nurses now, especially during the pandemic. It's like, oh, yeah, I only slept a little bit at work, and you're like,

Like, you're allowed to sleep at work, and it's like, we don't have a choice because otherwise we'll die. Right? Like, I read, and they're like sleeping instead of eating lunch or whatever at 4 a.m. You mentioned in the book that there's something called medical student syndrome. I don't know if that's the actual name, but I'd never heard of that. It doesn't surprise me that it's real, but tell us about that because that seems like everybody would have that, actually. For sure. So it's basically that when you're in med school and you hear about this horrible disease that sort of presents in this certain way,

you start questioning like, well, wait, do I have that thing? Like, I had a swollen cheek yesterday. Like, do I have a brain tumor? Like, you start getting so concerned about things that are just not something you should worry about. And so everyone in med school is constantly terrified that they're dying from some horrible illness. And thankfully, the vast majority of us are not. But in my case, I actually was dying from this horrible illness. And so I'm like telling my friends, like, I think I'm dying.

And they're like, yeah, but you're just like don't have the thing that, or you think you have a thing that we all think we have. It's hypochondria, man. It's an offshoot of hypocondria. We all know about this. Like, the other day, I thought I had, and then they insert something that, like, one person out of 10 million or less gets, right? Exactly. Like, I woke up and I couldn't pee, and I thought I had Surfer's Milopathy, and then I

looked it up, and there's only four documented cases in planet Earth. My friend actually did have something called, have you ever heard of Surfer's Milopathy? You heard of this? No, I haven't. I thought you just made it up. So apparently it happens mostly to Asian males who go surfing, so there's already, like, a seriously limited. But you know how you pop yourself up on the board and you've got that weird sort of yoga,

cobra position? Well, the way that I guess certain Asian males especially are built, there's a nerve in the spine that gets compressed in a weird way. And so my buddy got this. And apparently it's literally like there's five documented cases of this happening, you know, in the United States and the last 30 years. So what happened was he couldn't walk and they had to bring him back to shore and he's like, I can't walk.

And they took him to the hospital. Of course, he's freaking out. Oh my gosh. And he couldn't pee because whatever nerve there wouldn't release the bladder. Yeah. So they had to basically like drain it using a catheter. And he's, you know, you can imagine what that was like. And well, actually, you can't, you know a lot about that.

And we'll talk about that in a second. I do. He was in the hospital and like everyone, people come in, everybody who was a pathologist of any kind or nurse came in and was like, so surfer's myelopathy, huh? It was like he, it was a disease. And it was like, yeah, thanks. You know. The one you don't want to win.

Yes, the one you don't. But he's fine. It just goes away, I guess, after a while. But I think maybe he's lucky. So, anyway, back to your near-death experience and your existential sense of doom. So at some point, you realize I'm actually sick, right? Yep.

How does that happen? Sure. So on that OBGYN rotation, I actually, like, sort of reached what I consider to be, like, the pinnacle of medical school, where I delivered my first ever baby. And I actually remember the second baby I delivered even more than the first, because the parents saw how nervous I was, and they were like, this isn't your first time, right? And I was like, oh, no, definitely not my first time.

I delivered the child and I was like, by the way, it was a second. I was like, but your son, he's like so healthy. Look how good he looks. Just like, don't worry about it. Yeah. This is like, it's in the middle of like delivering children. Like this is like, you know, one of the reasons you go to medical school.

And it was during that period, I started feeling more and more sick. And I actually got to a point where I took my medical school exam at the end of this rotation. And I wanted to take the exam. It's just, I just felt like I had to complete that. So I take the exam. Yeah. And then I walked down the hall to the emergency department and they run some blood work on me.

And I'll never forget, the doctor walks in the room and says, David, your liver, your kidneys, your bone marrow, your heart and your lungs are all shutting down. Oh, wow. You have to hospital? They're like, how have you not been in the hospital? And it's like, well, I've been busy with this rotation. I had an exam. Come on. That's a pretty good excuse.

But now you have to go to the air. Yeah, exactly. So they hospitalized me. Within a few days, I was in the ICU. with everything shutting down. I was on dialysis because my kidneys didn't work. I had a what's called a retinal hemorrhage, which made me temporarily blind in my left eye,

and I was getting daily transfusions just to keep me alive. And like I said, just a few weeks before, I'm like delivering my second child ever, and all of a sudden, here I am in the ICU. Good Lord. Okay, so this is a dumb question. I acknowledge that. Did it hurt and how did it hurt?

Because if that many things are going wrong, does your body numb itself, or you just like everything hurts at the same time? I mean, how does it feel? Again, I know it's a dumb question, but I'm curious. No, I don't think I wouldn't have known until I went through myself. The pain is like hard to describe.

It's so unbearable because when your kidneys and your liver stop working, what happens, you start gaining fluid all over your body. So like you've seen people who have a D more, they've got like a big belly because of ascites. When that fluid starts spilling everywhere, it starts stretching the linings around your organs. And it's basically, it feels like you're being like literally stabbed in like every organ in your body.

It's horrible. And I remember for me, a couple weeks into that while I'm in the ICU, I remember the pain was so bad that I started slowing my breathing down to a level that was so slow that that's like sort of right before you pass. Like you basically, your body is like can't take it anymore. And I remember being at that stage. I remember my sister. She was sitting next to me. And I remember my sister saying, just breathe, Dave. And I heard it.

And like all of a sudden it was like, all right, I'm going to keep doing this. And the monitors in the room that were like beeping and alarming. they stopped beeping and alarming, and it was like, I'm going to keep doing this. But the way I thought about it was like, I'm not going to keep doing this for like days or weeks. I'm going to do it for like one more minute. And I'm doing it for like one more minute after that. And it was this sort of like mindset. And unfortunately, Jordan, and we'll get to it, I ended up spending about six months in the hospital and critical condition.

If you told me a week two, David, you're two weeks into six months. No way I'm going to keep breathing, right? Yeah. Like there's no way I could handle it. But it was like that whole added, you know, one minute at a time. This reminds me of, you ever heard of Marcus LaTrell, that Navy SEAL, that he got like shot down? Yes. Not shot down, but.

He was trapped on a hill by himself, right? And I think Afghanistan, it's been so long since he's been on the show. And he, I think he was shot in one leg or both legs or the bat. And he was like, he would draw like a line with a stick in the sand and then crawl over it. Then he would draw a line with the stick. That's what it sounds like to me. But you're in a hospital bed trying to breathe. I actually think you probably had it a little bit worse because at least he could

breathe in. Well, then again, he was in Taliban-controlled Afghanistan. So I don't know. It's a toss-up. It's not a competition, folks. What is that, man, I'm loaded with tough questions today. What is that space like between when you know, this is before you get super sick, right? Yeah.

That space between when you know something is wrong and you feel that sense of doom, but you don't know what is wrong with you, right? Like you haven't gone to the doctor and gotten checked out yet. Because it's surely during the exam, you were like, I kind of feel terrible. Yeah. Because you went, eventually you went and were like, I should probably look into this. It's like, you know, but you don't really want to know. Take us back to that time in your life.

I know you got super sick after that, but surely there was like this interim period where you were maybe in denial or something. I don't know. Yeah, for me, there was a lot of denial. When I would start to think about it or start to Google some of the things that I was experiencing, I would see horrible things coming up. And so, like, even though I was a medical student and I should like seek out care, I'm still like, I don't want to go there because, like, you know, maybe this could be

really, really bad. So I think there's a lot of denial. I think there was, frankly, just a lot of fear. I was terrified. I was like, I saw my mom pass away from cancer a few years before, and everything I was dealing with, like was pointing to this is likely some horrible aggressive cancer. And I was like, oh, my gosh, this is terrifying.

So was it MSOF? What is that again? It's multi-multible organ. Yeah, that's right. Man, that's... You don't want that. No, but, yeah, right, you don't want that. But what seems almost worse is a hard word to use here,

What seems also horrible about this was nobody knows what's wrong with you, right? They know the symptoms. They're like, oh, your heart, your liver, your kidneys, and all this stuff is shut it down, but it wasn't like, you have this. It was just like, yeah, that's happening to you. Well, why? Oh, we have no clue, but you're probably going to die. Like, that's just worse than being like you have this very specific form of whatever

and it's going to kill you. It's horrible. And I remember, you mentioned MOSF in particular because when I was a medical student, I remember writing MOSF and like, just casually like, oh, this is what they have. like, obviously I was concerned about the patient. We were trying to get a diagnosis, but like all of a sudden, here I am as the patient. I'm like, oh, my gosh, like, this is horrible. It's not just how sick you are and how much pain you're going through, but it's also

the uncertainty. And so for me, it was like, I was so laser focused. Anytime I'd wake up, which was about an hour a day, I'm like, you know, what is it? And that's sort of all I could ask, like, what is it? And then it's like, you know, go back to sleep. But it took weeks before we got a diagnosis. Not knowing would make it just 10 times, well, 10 to 100 times worse. what's the scale even matter at this point?

It just sounds horrible. At least you could sleep for 23 hours a day because it sounds like you mostly really would want to just do that. What is it like to be at that point? I would imagine pretty damn sure that you're seeing everyone, like your family, all your friends. It's got to be, you've got to be thinking this is the last time I'm going to see Tom.

Like, bye Tom. Yeah, in fact, and my doctors were clear about that. They said you should have your family and friends come in to say goodbye. Wow. Like you should do this proactively. Like, that was like a favor, not a favor, but that was like a, you know, a positive suggestion. Like, you should have everyone come in.

And so I said goodbye to everyone. Like, you know, one at a time came in, hugged me, said goodbye. And it wasn't like, you know, this is, you know, a maybe thing. It was this is it. It was, yeah. I know that you had said you didn't want some people like your ex-girlfriend at the time to see you because. That's right. Ex-girlfriend of the time.

Yeah. The last memory of you would be in this weakened state. And I, at first I was like, oh, come on, swallow your pride. But actually, you know, thinking about it now, I think I can understand that. I wouldn't want my kids, I got two kids, two and four. If I was like, let's say, God forbid, I got some sort of horrible form of cancer and you're really gaunt and you're in bed and you can't move and you get this, you were swollen and stuff. I don't know if I'd want my son to be like, I remember dad.

He was like a monster. You know, I would want him to remember me playing Legos on the floor. I'm going to like, I'm tearing up just thinking about this. I'd want him to remember me playing on the floor with Legos, not like the last time he saw me. I looked like a monster and I'm haunting. his dreams until he's old enough to understand what happened. Like, that's not, nobody wants that. That's exactly where I was coming from.

And, like, you know, here I am years later. I look back and I'm like, gosh, I wish that I hadn't, like, you know, pushed Caitlin away. Sure. But, like, that's exactly what I was thinking. I was sure I wasn't going to survive. And all I could think about is how she would remember me. I mean, all that would have been left of me at that stage, right, is how people remembered

me. And that's why I made that decision, which, again, I don't know if it was the right one. Yeah, it's hard to say, I mean, 2020 hindsight, oh, you should have a little of it. It would have been fine. I mean, it's easy for us to say now. You're still here, and you look great for a guy who almost died multiple times. Totally.

Man, I saw some of your photos online, because in prep for this, I looked at your White House talk and then a talk that you gave it. What is it called? Like NextMed or something? I'll link it in the show. Yeah, NextMed, that's right.

I'll link it in the show. It's a really good talk. But, man, those photos are really scary. It's brave of you to post those, and I think it's important that you do. Yeah. But can you describe just some of this? you were retaining fluid to the point where you looked like,

I don't even know how to explain it. It's just I've never seen a man look like. Like, candidly, it looked like you were pregnant. Yeah, totally. So simultaneously, two things were happening. One is because my organs weren't working, I was gaining fluid everywhere. So I gained about 100 pounds worth of fluids.

Imagine just like 100 pounds of swelling everywhere. And at the same time, I wasn't able to eat because I was so sick, and I just didn't eat for like weeks at a time, about seven weeks. I was stuck in bed. I couldn't get out of the bed. Sure. And so all of my muscle went away.

So I lost like 60 pounds of like any sort of lean muscle mass while gaining 100 pounds of fluid. And so it creates this like image, which you've seen it. And in fact, that's actually when I was out of the hospital. And when I was like, man, I'm looking pretty good. Yeah, you're standing. I was like, I was like, I'm standing. I'm looking pretty good. But of course, like, you know, six weeks earlier when I was in the hospital, you know,

I wasn't looking so good. Man, you recount, you peed out 50 pounds of retained fluids over the course of... Two weeks. Two weeks? Okay. That's... Isn't that crazy? So this is, again, this is going to be an episode full of weird questions.

But what does that feel like? Because I don't think I could ask anybody else what it's like to pee out 50 pounds of retained fluids. That's like pissing your way to six-pack abs. And you're probably the only person that'll ever meet who's done that. It's nuts. I mean, literally, like, not exaggerating. you're basically peeing for the entire day for 14 days. And so, like, you pee and then, like, depends on how long you want to wait.

Like, do you wait like 15 minutes or five minutes? But like, then you're just back. But it's like, it's crazy. In two weeks, 50 pounds of fluid was urine. I urinated out. My God. Every day. So at night, did you just get up every?

So you're just waking up every hour or two. Oh, my God. It must have felt great, though, because you get up every day and you're like, I've lost 10 pounds. and you just like, I can feel on the top of the world. And it's just, and you can see a visible difference if you're pissing away that much water every single day. That must have been, that's kind of an interesting, that just must have been such an interesting two weeks. I know it's such a strange thing to think about, but I'm like, man, a lot of us would kind of want to experience something like that if we didn't have the whole, you know, almost dying thing.

All the other stuff. Yeah. All the other stuff. But even at this point, pissing away all that fluid and being looking like this sort of bloated, you know, guys. Goblin, man, at that point. You still don't have a diagnosis, right? So you've, at that point, how long, how long had it been that you were like in the hospital, but nobody could tell you what was wrong?

How long was that time? Seven weeks in the hospital, no one could tell me what was wrong. Seven weeks of multi-organ system failure. And then I just started to improve. Like my liver function, my kidney function started to improve. And so that's why I started urinating all this fluid, is because my kidney started working again. My liver started working again. And so it started like doing its job just to, you know, create urine.

All that started changing still with no diagnosis. So for the next four weeks, I'm like out of the hospital and like, what the hell was that? Like I just got like attacked by the craziest thing ever. And my doctor was like, I don't know what it is, but let's hope it doesn't come back. And I'm like, that's not the answer I want. I also hope it doesn't come back, but let's figure it out. Right.

Like I'm not going to bet my, yeah, I'm not going to roll the dice on that. We might want a game plan next time. Totally. And so, yeah, for four weeks, I basically like started requesting medical records when I was kid, all my records from the hospital, trying to, like, piece it together right now on my, my window, like, behind me. Right. Eventually, we, uh, we didn't figure out anything, frankly, but four weeks more went by,

and that's when I started having everything started to come back. And so, then I was back in the hospital, and it was coming back, you know, in full force. That's so amazing. The body's just so amazing, right? Like, you're basically going to pass at any time. Yep. And then suddenly your kidneys are like, no, no, no, no, no. Wake up again.

Now we're good. This is disgusting. Look, we leave for two weeks and this is the state. right? It's like, ah, let's get ready. So, but everyone at this point thinks what? It's some sort of lymphoma. Was that the working hypothesis? That's right. Yeah, lymphoma was that everyone was really worried about, a very aggressive lymphoma. By the time I went in the second time, my doctor's like, all right, let's finally cut out a lymph node, because I was so sick before that my doctors were worried about if I could survive a surgery to cut out a lymph node. And to diagnose lymphoma, you got to cut out

a lymph node. And so here I was. They're like, okay, you're relapsing, but you're not yet in ICU. Let's get a lymph node now. and let's see what we find. So can you explain what, hell, explain where the lymph node is? Because I think most people probably do know, but I don't know if everyone does, and then what is lymphoma? Your lymph nodes are in your body for a couple reasons. One is that they're the places where your immune system goes to communicate with other immune cells. Like you've literally got trillions of immune cells in your body, and they like need somewhere to talk to one.

Okay. So they go to the lymph node. That's where they can talk to one another. It's also important for fluid as well. but your lymph nodes like your home base for your immune system or you're like your firehouse for a fire department right like you all go there to communicate then you go ahead and you fight things and you go back to your home base lymphoma is where you get a cancer within one of those cells in your lymph nodes so one of your immune cells becomes cancerous and then you get a big lymph node and they get a big lymph nodes and I see and so I had a bunch of big lymph nodes and I was really sick so like okay well I think this might be lymphoma so cancer of one of those immune cells in your lymph node and so they cut it out The doctors were really perplexed because they didn't see lymphoma when they looked at it on their microscope. What they saw was this pattern that had been described for the first time back in the 1950s and occurs in like 5,000 patients a year in the U.S.

Okay. Called Castleman disease. And I was like, I was a third year med student. I had never heard of Castleman's before. I'm like Castle. What? What is this? Yeah.

And so it basically, it behaves like lymphoma where it's this aggressive, like, relentless disease that tries to kill you. but it's actually got more similarities to an autoimmune disease than a cancer. So, like the aggressive nature of a lymphoma, but it's actually the underlying problems are much more like an autoimmune disease. And at the time, there were no approved treatments. And so for me, chemotherapy was the only thing I could get.

Wow. It's like the doctor from family guy or something where it's like, the worst case is it's lymphoma. It's like, congratulations, you don't have lymphonia. You're like, thank God. Actually, there is a thing that's worse than I just. never heard of before. It's called Castlemans. And it's like, that's not what?

Right, you dragged me in here to say that. Wait, how many people get Castlemans again? About 5,000 a year in the U.S. Okay, that's still, that's not nobody. It's not nobody, but it is quite rare when you think about, you know, we've got 300 million Americans and only 5,000 of us get diagnosed each year. And at the time, you'd said something like you had looked it up in a database. The database was ironically named up to date, and it was completely out of date.

So that's right. That must have been kind of a bummer to say the list. It was. So up to date is like literally the resource the doctors go to for, as you said, up to date information. And so I went to it and it said that there were four patients ever with my subtype of Castleman's, which was just wrong. But so I saw that, I'm like, oh my gosh, I'm like the fifth patient ever.

This is crazy. And then like three weeks later, I learned there was a clinical trial down the street at UNC that was enrolling patients with my subtype of castlems. I'm like to a trial that they were enrolling. 79 patients in, and they'd already enrolled 30, and I was like, wait, the mass not adding up. So, like, there's four people ever, right? But there's, like, 30 people down the street. Yeah.

What's happening here? And that was sort of, like, my first introduction to this, like, whole realization that for the vast majority of diseases that are rare, no one has a clue what the hell is going on. Like, 95% of rare diseases have no approved treatments. And for a lot of cases, we don't even know how many people have any of this stuff. You two are going to die. When you see the killer deals on the fine products and services. that support this show. We'll be right back. If you're wondering how I managed to book all of these

amazing authors, thinkers, and creators and world changers every single week, it is because of my network, Dr. David Faggumbaum was introduced to me via another guest on this show, Adam Grant, and I'm teaching you how to build your network for free over at six minute networking.com. Yeah, you're not booking for a podcast. That's not what I'm talking about. I'm talking about improving your relationship building skills, inspiring other people to want to develop a personal or professional relationship with you. This is a game changer for your career, for your social life. I don't care if you're retired or at the beginning of your career. This course will teach you great systems that are easy to apply, non-cringy, down to earth, nothing awkward in just a few

minutes a day is all it takes. And many of the guests on the show, subscribe and contribute to the course. Come on and join us. You'll be in smart company where you belong. Again, the course is free over at six-minute networking.com. Now, back to Dr. David Faganbaum. It's often seen as a bad idea to create treatments for diseases that only a few people have, right? Because research is really hard to do and there's limited resources. So if you get something really rare that supposedly five people have, or even 5,000 for crying out loud, often you're just kind of screwed, right? Because not only is there no profit in finding a cure, so big farm is like, hey, man,

5,000 people a year, but the resources, even if everybody was like, you know what, let's just do this an altruistic way, it's like, look, there's 15,000. people a year getting this other thing. There's 35 getting this other thing. We can't research this random thing. We got a lot more ducks to, what is it, fish to fry. We got bigger fish to fry. Ducks to fry, I don't even know. We got a lot, we got a bigger problems. So you're just kind of like, if you get a disease, you want something that everybody has already had for years and that there's a lot of treatment, of course. But if you get any kind of disease without a treatment, you want something that at least a lot of people have and you had no such luck. That's right. And,

And as a result, there was this, like, one drug that was undergoing clinical trial. Like I said, it was been enrolling people down the street. But there was nothing approved for it. And I also learned that 95% of people with rare diseases don't have a single approved therapy. And it's like, oh, my gosh, like you said. And the other thing, too, it's crazy is like each rare disease is rare. But, like, when you add them all up, it's like, actually, there are a lot of people with rare diseases. One in 10 Americans has a rare disease.

Yeah. Just each one is, like, super rare, right? Oh, man, that's disappointing. So we've got to figure out how to solve this, right? Yeah, that's actually... kind of scary, right? Well, terrifying, I should say, that one in ten Americans has a rare disease. And you said how many, what percentage of diseases have no treatment? Well, so 95% of those rare diseases have no treatment. But rare diseases make up a large portion of our population,

because again, each one's small, but collectively they're huge. Oh my gosh. I think the perception of medical technology among the public is really skewed. If you'd ask me, probably before I read your book and looked at your talks, I would say medicine is so amazing. There's breakthroughs every single day. You can cure almost everything. I still think medicine is amazing. But this is not true. People like me think it's the case because the 100,000 things people tried and did that

failed like some clinical trial for a... That doesn't make the news. The only people who find out that didn't work is like some subunit of whatever hospitals run in the trial. Only the breakthroughs make the news. So we have this crazy cognitive bias that like, oh, that disease you heard of last year, they found something for that by now. No, they haven't even started on that thing by now.

And it creates this sort of like mental framework that there must be people out there solving problems. In the book, I call it the Santa Claus Theory of Civilization, which is like, I had this idea that like there must be this like group of Santa's elves who are working on like every disease. You know, they're collaborating and they're working all the other elves and they're going to deliver a treatment for your disease. And I actually really did believe that there were like collaborative teams working on diseases. But then all of a sudden I got into it and I learned like it is just such like just a shit show, frankly. I mean, there's just people in all over the places that aren't working together, and it's just like, it's totally uncoordinated. And as a result, you end up not having treatments for all these diseases. That's really disturbing, especially because as I get older, I'm 44, as I get older, and you hear about something like ALS, for example, right?

Yep. You're just like, oh, man, what if that happens to me? Are they working on something for this? And then it's like, uh, the progress is really limited on this. there's not like a thing you can get now for this that cures it really scary it is and aLS is an example where a lot of resources have gone into it and there are two approved drugs but the two drugs add months of you know additional life and so like there's so and so and the ALS doesn't even fit into the 95% because it's part of the 5% that has an approved drug oh man but those drugs only

add months and it's like there's another 95% they don't even have a single drug that can help Months is not really what we were looking for here. I was thinking like, again, ideally if you get diagnosed or something like, you want the HIV thing, right? Where you're like, oh, you have this and like, you've got to do certain things, but basically you're just going to live a normal life as long as you take your pills or whatever it is. That's what people like me think most diseases are like, how fast we hit HIV.

Everything else is going to be fine. They probably have that forever. No, not at all. Okay, so you're still in, holy crap, there's no treatment for this, and you make a switch, you go towards the mecca, for Castleman's disease research, did that trial work out for you? It did not. So I went to the Mecca, which is Little Rock, Arkansas.

I started on this treatment, this experimental drug, and it didn't work for me. Man. While I was there, I started relapsing, and so we tried the drug, it didn't work. I started getting really sick, and so they gave me seven chemotherapies all at once, like the seven worst chemotherapies out there, and they just completely destroyed my immune system, but I started feeling better with the medicine. And it actually worked. It's like finally we were really controlling this thing.

But we hope that maybe even though the drug didn't work when I was sick, we're like maybe it can prevent it from coming back. So like maybe I can just like keep taking it every three weeks and see if it comes back. And so I returned to med school. I was a third year med suit and I was like, you know, back to rotations and seeing patients. And I really just hope that the disease was in my rearview mirror. And then about a year later, the disease came back and like, you know, just exploded. And so I'm like back in the ICU, you know, all my organs shutting down.

My doctor tells my family to come in again to say goodbye. And it's like, I couldn't believe it. And that's when my doctor actually told me. He was like, I said, okay, Dr. Vane, we're like, what are we going to do next? Well, this is it. The only thing that's in development didn't work for you. I was like, well, aren't there like other promising leads? Like, you know, we know this thing can work in this way, but like, is there something else that could work?

And he's like, that's it. Like, we've tried everything. There's nothing more that we can do. And I remember hearing that and just being like devastated because, you know, Jordan And so much of this is like hope, right? Like, you know, thinking about like my sister talking to me when I was sick. I'm thinking about like my ex-girlfriend who actually then became my girlfriend. We started dating again.

If you go to the hospital, like, those things, like give you hope. And like, you're looking forward to things. But then when your doctor tells you, like, there is no hope, this is it. I was heartbroken. And then I really quickly went from, like, devastated heartbroken to, like, you know, there may not be a drug for Castleman's that's coming down the pipeline. But you just gave me a bunch of chemotherapy. And it didn't work for long term, but it did something.

And that chemotherapy wasn't made for chalmers. It was made for lymphoma, actually. But it worked. So, like, what about the other drugs out there? Like, what if there's something else out there? It's kind of like, you've seen the movie The Martian, right? So, like, Matt Damon gets stuck on Mars, and he's like, how do I get back? And it's like, well, the only way to get back is to use the tools that you have within reach.

So I'm like, shit, I've got this horrible disease. And the only way that, like, I might be able to save myself is if I can find a drug that's already at the CVS. And so my mission then became, could I figure out what the hell is going wrong in my immune system? So then maybe I could find a drug that already exists that could treat it. You've got an interesting, this is a little sidebar, I suppose, but you've got an interesting perspective that you discuss in the book on the way people treat you when you're sick. And you kind of, me, is like, are people doing things out of sympathy or how would they react? How would they act towards me if I wasn't dying? Tell me about that a little.

Because it was kind of a humorous thing to think about, like, you're just being nice to be. me because I'm going to die. It's like, what does it matter, man, at this point? Why are you worried about that? Totally. I was so worried about it. And it was like, well, in particular with Caitlin, I mentioned Caitlin and I started dating again.

And it's like, does she really want to be with me? I mean, I think you described me as a gremlin or a goblin. I think that's like a good way to describe what I looked like. No, it's like, that's very accurate or like, I don't know. There's probably other words to describe, you know, what I looked like. Yeah. Oh, Gallum. Yeah.

That's actually who I looked like. That's actually accurate. Yeah. So Gallum. So I look like Gallum, but not only that, I'm also, like, literally, like, packed with this awful disease of, like, explosives waiting to go off in the future. And it's like, if someone could have, like, there's no way anyone could have more baggage than I did. And all of a sudden, Caitlin's like, yeah, I want us to start dating again. I'm like, are you sure?

Like, you want to date Gallum that's, like, loaded with, like, a suicide vest of a horrible disease and, like, all these baggage? But she was like, no, I do. And she was, like, offended that I, like, questioned it. And, of course, I loved her. and I, like, wanted to date her, but I also was, like, so worried that she was just wanting to date or sort of acquiescing because she thought that was, like, the right thing to do. Right, yeah. And that's just sort of how I felt about, like, so many things at the time.

And I just, yeah, I subsequently learned that I think I was wrong to be so worried about it. Maybe, yeah, but I also understand thinking about that, but I'm also like, man, at that point, just take what you can get, man. Just like, don't question it, right? Don't question it. Yeah, don't question it. Yeah, don't question it. Yeah, for sure.

Oh, you want to date me? I don't care why. But like... For sure. Yeah, for sure. Like, look, man, the prospects are otherwise... The pickings are quite slim. Otherwise, you know, take it way to get it. It's not good people that shouldn't gollum. Yeah. Come on, man. What are you on Tinder with that? All right. But another thing I found quite fascinating that you mentioned in one of your talks is you said, rare diseases, they're not necessarily more complex than other diseases. In fact, they're often more simple. They're just less studied, which of course makes sense on its face, right? Who's to say why is more complicated?

that people haven't taken a look at this thing under a microscope or whatever. And the underlying pathology is often simple and it affects just a single gene, for example, in some of these things. Yep. And of course, it's hard to create a targeted treatment if you don't know what needs to be targeted. So did you find that Castleman's was not that complicated? Is that why you mentioned that? Because it seemed a little bit detached from other things, or maybe I just didn't put it together. But that's kind of a relief, right? Not all this stuff is curing a massive, complex disease. just that nobody has bothered to try. Yeah, I think I mentioned it at that point in the book, because for me, that was like partly what was giving me hope is that the more I understood

rare diseases, the more I realized, like you said, it wasn't that they were like particularly complicated, just like no one was putting any effort into figuring them out. Yeah. I was like, wait a minute. So we just like use the same technologies that we're using on Alzheimer's or cancer, but we apply it to this thing that no one's ever even scratched the surface. Like, maybe we can blow this whole thing up, right? And so for me, that gave me a lot of optimism and hope, even though I didn't really know, like maybe Castleman's wasn't going to try out to be really complicated.

But I ended up figuring out that it actually, it is more simple, less complicated than we thought initially, and that, I'm sure we'll get to this, but we were able to discover a drug that was able to save my life. And actually additional drugs that have been able to save many other patient's lives because the work just hadn't been done yet. We're getting there, man, slowly but surely. So how did you start to take the bull by the?

the horns. I know you read something like 2,000 papers on Castleman's. I guess at that point, you're just devouring anything you can get your hands on. Yeah, so I had this like very clear mission in front of me and it was, okay, you're dying from this horrible disease. Chemotherapy just gave you a little bit of a window, but it's probably going to come back. So, you know, what's your game plan to prevent this thing from killing you? And so I sort of thought about it in a couple ways. One is that I wanted to get together all of the physicians, researchers, and patients from around the world to start working together for Castleman's. You know, coming up with what we call our international research agenda, like, what do we need to do to figure

this thing out? So that was one thing I was organizing this community. And then at the same time, my very clear task was figure out what's happening in my body and then figure out, is there an already FDA-approved drug? They can reverse that thing. So like if we figure out there's too much of something called IL-6, is there a drug that inhibits IL-6? It was sort of that simple. But in order to figure out, you know, what was going on. I needed to understand, like you said, the 2,000 papers that had ever been written about Castleman disease. So I had to read all of those. I had to connect with all the experts. And then I had to start performing experiments on my own blood samples and my own lymph nodes tissue. And so I started storing my blood samples every

couple of weeks because I thought I was going to relapse at some point. And the only way to really figure out a disease is to actually get samples when it's active. And so I needed to store it for like when I was going to relapse. My goodness. And sure enough, I did relapse. I got a bunch of chemo and it saved my life now for the fifth time. But when I got out of the hospital, I kept relapsing. Each time you relapse, it's basically your likelihood of surviving is very low. And now I've basically survived five times. It's like, you know, you're going to run out of luck at some point.

And so it was like, oh my gosh, I got to find something to keep this thing in remission. When I got out, I did a bunch of experiments on my own blood and my lymph node. And I figured out that this one part of the immune system, it's basically like a communication line. immune cells used to communicate. I mentioned the lymph nodes where they go to talk to one another. Yeah. And this one part of it, one way they communicate, was turned into overdrive. Like, it got this really strong signal. Like, think about it almost as like the fire alarm or like the alarm system is just into like, yeah, it's turned on to say like something's going on here. So all the immune cells are just going crazy. Like the alarm's on. We don't know why it's on. But the idea is like, well, maybe we can just turn the alarm off because there's a drug that inhibits that thing. It's called an mTOR inhibitor called Sierra Lina. And it had been around for decades, Jordan.

It was approved first for organ transplant rejection and had been used for a rare lung disease. It had never even been considered for my disease. I was like, wait a minute. If I've got too much mTOR turned on and this thing turns mTOR off, like, I don't care if it was made for calcium, maybe it's going to work. And so I started testing it on myself. And this past January marked 10 years that I've been in remission, no relapses.

I mean, three and a half years of like nearly dying five times. And now it's 10 years of nothing. I'm gonna knock on some wood and I hope you knock on some wood with and reach for me. Right here. We're good on that. It's crazy, right? That is crazy. And I can imagine the motivation, if you can even call it that.

It seems like an understatement at that point because your goal is not like, oh, I'm going to get a prize or I'm going to get a fellowship or a tenure for this. It's like, I might not die right now. Yes. Or in the next year, if this works, it's like, and you're dating Caitlin, it's like, I'm probably not going to make it to my own wedding if I don't figure this out. Like that's next level motivation, I suppose. Totally. And yet we had a wedding date. It was May 24, 2014.

And in January of 2014 is when I'm experimenting and running these tests on my blood. And I started taking the drug around then. And it was like, I'm not going to make it to May 24, 2014, unless I find something. And so I tested it. And I started taking it myself. And then, like, I made it to May 24th. And we had, like, the most amazing wedding day. And it was so special.

And then, like, May 25th, I was like, oh, my gosh, I'm still here. Yeah. And, like, I'm not exaggerating, but, like, every day I wake up and I'm like, oh, my gosh, this is amazing. And then, like, you know, you measure it, like, one day at a time. Then you start measuring it, like, one week at a time, one month at a time. So, like, I was measuring my remission every month until, like, around, like, month 34. And then by the time I got to, like, month 34, I was like, I started measuring it in years. And then.

And now, I was on a podcast recently and someone was like, you can measure it in decades now. Yeah. Like, those first time I've said that, it's like, decades. Like, whoa, this is crazy. You're coming up on that. I mean, that's like, yeah, your wedding. Well, first of all, don't forget the wedding anniversary. I know.

I was just thinking about that. Thank you. I'm glad in May 24. I got to plan the next few weeks. You forgetting your remission date, forgivable. You forgetting that wedding anniversary. She's going to be like, I dated a goblin and you forgot her anniversary. Married a goblin.

So, man, having this sense of urgency must have helped you break the mold a little bit, right? Both in terms of research and I don't know what you would call it in medicine, like almost like the chain of command, right? I would imagine. Yes. You were less afraid to approach people or try new things because your clock is running out, right? You're not going to get like a letter of reprimand for going around somebody at some medical department. It's like, I'm either going to die or not. This is a binary issue.

Exactly. I mean, it created this incredible sense of urgency. And the analogy I like to use is overtime. And of course, thinking about overtime in sports, right? It's time you didn't think that you'd have. But in overtime, there's this incredible sense of urgency, right? It's like if something goes wrong, like the clock is ticking down. You got to make sure everything goes right.

But it actually creates this real clear sense of just clarity. Like what do I need to do? Because like the clock's ticking. And so that sense of overtime is something that I've really like taken with me. And it's like what I've also learned is actually we're all in overtime. I mean, I think like I can feel the clock more than anyone else. But we actually are all in overtime. Yeah.

But the fact that I got into overtime when I was 25 years old and I'm in my fifth overtime now has just made it so real for me that it's given me like, such a sense of urgency for everything I do. Yeah. And it's given me such a clarity of purpose for what I want to do. I definitely want to talk more about that in a bit. I'm just thinking the level of stress you must have been under during the time where you were experimenting, that must have been absolutely ridiculous.

I mean, there's an anecdote in the book where you say, you thought you had like a fatal brain bleed. Yeah. And it just turned out you had like a stuffy nose, basically. And it's like, I just can't imagine thinking that every time I got a headache. That's just like, oh, I probably have a brain bleed. I'm going to die now. That's just... Yes. It was so difficult, and I'm laughing about this because that was during my fifth relapse,

but during my very first presentation, one of my closest friends came in to say goodbye to me, and I had, like, no platelets. So your platelets are really important so that you, like, don't have a brain bleed and, like, bleed out. You need platelets. And I had, like, no platelets. Everyone's, like, be careful. Like, David can't really sit up in bed. He can't really move because, like, you might just have a spontaneous bleed and, like, this is it. And so my friend, Francisco comes in to hug me and gives me a hug. and he gives me a hug. And right as he leans into hug me,

his stethoscope that's around his neck, like hits me, like right in the forehead, like right between the eyes. And there's like this moment where we're like looking at one another and I'm like, oh my gosh, did you just like poke me to death? Did you just kill me?

Francisco, like, what the heck? And so we're just like sort of like, I'm like stuck and I'm like froze and I'm like, Francisco, what did you do? And then like everything's okay. And we're like, oh, okay, this is okay. But like, I think the reason I want to bring that up is that like there's also this like incredible,

at least for me and my family, my friends, like need for like, humor in the midst of these horrible times. Like, when you think you just got like, poked to death by your friend, you like have to laugh about that. Because if not, you're just going to be like crying all the time. Of course. Yeah, your friend comes to say goodbye. A doctor

and he gives you a heartfelt hug to see you for the last time and his stethoscope is what does you in. It's like, okay, that was kind of funny. I know. Yeah. I know, right? You have to laugh about that stuff or else you're just like going to cry all the time. So you find this drug, and by the way, there's all these, some of your asides in the book

are so funny. There's these disease codes that are totally random, like burning, wild water skiing on fire or whatever. I mean, tell me about this. First of all, why does that even exist? It doesn't make sense to me. I don't think I'll ever be able to tell you why, but I can tell you a couple of these codes that just blew my mind. So one code, and these codes are the codes that basically,

if you go to see your doctor and they diagnose you with something, they have to put a code next to your name, and that helps them to build to basically get paid more or less, depending on, like, how complicated your diseases. So everyone gets these codes. The couple that blew my mind, one is the water. It was the one you mentioned. It was like struck by lightning while water skiing repeat event.

And I'm like, wait, repeat event. Like what? But then even more crazy is going through engine of airplane repeat event. And so it's like, it's like, wait, first off, you like can't really make it through an engine. Like, you know, an airplane the first time. And it happened twice. Like, you went through an engine like for a second time. So yes, there's like all these kind of like crazy codes.

And the reason I brought up in the book is that there wasn't a code for Castleman's. It was like, I was like, wait, you got a repeat event for an engine. And there's like 5,000 of us diagnosed every year. We don't have our own code. Yeah. And so that was just like, it just like I couldn't believe that sort of stuff. I'm like, this system is just so fragmented. And there's like so many holes in it.

And I happened to be a third, this stage, I guess I was a doctor because I'd finish medical school. And like, I was able to navigate some of this stuff. But had I not been where I was in. my training, I'm just like stuck with, okay, well, I guess since I don't have a code, maybe you should put me as like, you know, struck by lightning and on fire while water skiing. Jeez. You know what's better than a terminal incurable disease? The great deals on the fine products and services that support this show.

We'll be right back. If you like this episode of the show, I invite you to do what other smart and considerate listeners do, which is take a moment and support our sponsors, all of the deals and discount codes and ways to support this show are searchable and clickable over at Jordan Harbinger.com slash deals. If you can't remember the name of a sponsor, feel free to email me anytime. Jordan at Jordan Harbinger.com. I am more than happy to surface that code for you.

It is that important that you support those who support the show. Thank you for listening. Now for the rest of my conversation with Dr. David Faganbaum. I think I copied it from your book. It says being sucked into a jet engine second time. That's what it was.

So like you got sucked in once and then it's like, oh, I crawled out of there. But then I got sucked in again and here I am in the hospital. You know, it's tough. Can't tell if you're the luckiest guy around to the unluckiest guy around at that point.

You mentioned before that you had to find an FDA-approved drug, and I want to clarify why that is, because you can't just, well, making a new drug is really hard, but you had to find something that you could get that was already available. Can you explain that? Because it kind of gets into off-label use and what that means. Sure.

So what's really incredible is once the FDA approves a drug for one thing and it's like on the market, any doctor can prescribe it for any reason. reason they want. So, like, an example would be you develop a drug for toenail fungus as a tonal fungus treatment, and then your doctor decides, I'm going to use it to treat your hearing loss. And, like, they don't have to justify it. They don't have to, like, apply for anything. Like, you just, doctors can drive anything they want for anything they want. The only question is whether the insurance company is going to pay for it. I see. And so what this means is in our,

in our country, between 20 and 30% of all prescriptions the doctors write are for things that are off-label. So doctors are constantly prescribing steroids for a cold, even though no drug company ever did a trial to prove that steroids are helpful for colds, for example. And so what it did for me is it like opened my mind up to this idea of like, if I can figure out an FDA-approved drug that could work, my doctor can just write the prescription. And yes, we have to figure out how to get it paid for, but if there's a strong rationale and if it's an inexpensive drug, then I bet we can persuade the insurance company

to pay for it. Right, so especially if there's like a generic version of the drug, right? It's been out for 20 years, like you said. Yep. It's like, oh, this is 30 bucks a month for this, whatever drug from brand X. Yep.

I can take this and it puts my entire, it saves my life or whatever. So this, of course, leads to what your new company is doing. Tell us, or your new organization is doing. Tell us about what you're doing, because of course it's amazing, and it gives a lot of hope to a lot of people who both have rare diseases or are just convinced that they're going to end up with one. No names mentioned.

Well, instead of calling it medical student syndrome, it's podcaster syndrome. Yeah, I don't know what you're talking about. I'm not referring to myself. Yeah, it's podcaster syndrome. You read enough books. You're like, this could happen to me. No, Jordan, it really can. No, no, no, it can. Oh, it can. So, yeah, this new organization, every cure, I mean, I started it 100% because I'm not, supposed to be here. Like my drug wasn't made for me. It saved my life. It was always there. I am completely on fire about this idea that there are drugs at your nearby CBS, your nearby Walgreens that could help more diseases and more people, but the incentives aren't aligned for us to do that. I see. And that like

our system isn't looking for these more new uses. I mean, you mentioned generic drugs earlier. 80% of all FDA-approved drugs are generic. When a drug becomes generic, that means it's no longer. longer profitable because many companies can make that same drug. So that means that 80% of our drugs that can help people today and tomorrow, no one's doing any research whatsoever to figure out more uses for them. To me, that's like the craziest thing ever, because these are like the oldest, in some cases the safest, certainly the most well understood, and by far the least expensive drugs. So the drugs that can help people like all over the world are the ones that no one is doing

any research into. So we created every cure a couple years ago because we believe that every drug should be utilized for every disease it possibly can, regardless of whether it's profitable or not. So we're a nonprofit organization. We also started a couple years ago. We've been thinking about this for about 10 years. But really the catalyst for it was that the incredible advances with artificial intelligence allow us to do what I've done. And I didn't mention this. I joined the faculty at Penn.

And my center has now done this a total of 17 times where we've taken a drug. and found a new use for it. Many of those in Castleman's, but also in other diseases like angiosarcoma and a rare disease called Data 2, Poem Syndrome. And so we've been doing it, but we've been doing it one disease at a time, Jordan. And so like what artificial intelligence allows us to do

and sort of becoming clear in the last few years is that we can actually repeat the exact process that me and my lab have been doing one disease at a time, but we can do it across all drugs and all diseases simultaneously. Wow. So we can actually have AI predict. There's 3,000 approved drugs

there's 22,000 diseases. So if you tried every drug for every disease, you do it 66 million times. Oh, my gosh. We have a handful of algorithms that can come up with a score from zero to one for how likely each one of those 66 million attempts are.

And then we can say, okay, among all the possibilities, what are the most promising? And then we can focus in on them. So one part is the technology was really advancing. And the other part was I got this crazy phone call three years ago, Jordan,

you'll like this. So it's March 31st, of 2021, so the day before April Fool's Day. Right. And I get this phone call from an unknown number, and the person on the other end says, hi, is this David Faganbaum? I have a former president in the line. He wants to talk to you.

And I'm like, is this like the president of like the middle school association or like who, like what sort of president? Yeah, president of president. Yeah, maybe president of Penn. And I'm sort of like confused. And I'm like, well, maybe it's the president of the United States, but it's like, you know, probably not. And anyway.

Yeah. So on the other end, I hear, David, it's Bill Clinton. And I'm like, oh my God. So it is a president. It's not the president of the middle school association. He had read my book. He'd read Chasing My Cure.

We connected on a bunch of levels. We both went to Georgetown and we went to Oxford and we love Little Rock, Arkansas because that's where my life was saved five times. But the reason he reached out is he was like,

David, I'm blown away that all these drugs have been developed and approved and that no one's figuring out more uses for them. I'm blown away that even as medical technology advances, no one is looking back at the drugs that were made 50 years ago or 100 years ago to say, are there other things they

can be useful for? He said, you know, what's your plan here? And I said, well, for the last seven years at that stage, I've been wanting to start a nonprofit focused on this to try to match drugs and diseases, but the technology just really hasn't been there. It's starting to come online. And I think I want to start this with my, actually my medical school roommate, Grant Mitchell. And President Clinton was, you know, really encouraged me to do it. He said, well, I think you need to do it. And if you do it, you'll have my support. And so that call was a bit of a catalyst. Grant and I had been talking about we wanted to do it. And then President Clinton kept calling every month or so and kept being like this unknown number and, you know, connect you in.

Wow. But we ended up deciding to do it. And I'm just so happy we did. It's really incredible, especially using AI to unlock new uses for existing drugs. Can you kind of explain like I'm five? You did explain it a little bit, but it's, sure. I think some people are Like, I don't get how, what is the AI actually doing? I think maybe I'll start with an artificial intelligence algorithm that everyone listening to this uses. And that's it. If you've ever gone on Netflix and you see where it says, like, these are shows Jordan that you'll like. Yeah.

Netflix uses something called a random forest model where basically Netflix comes up with a profile for who you are, Jordan, and then comes up with a profile for all of the shows you've watched all the way to the end, all the shows that you watch for, like, one minute and switched off. Those are the not good shows, the ones you watch all the end are the ones that. are good. And then it asks how similar are the ones that you've watched all the way to the end to these other ones that you've never watched before. And then it gives a prediction saying, like, you're probably going to like this. And it's in order from like the highest to the lowest. So we do something very, very similar with at least one of our five algorithms, just my favorite

algorithm. And basically, we map out every drug against every disease. So all 66 million possibilities, every gene, every protein. Imagine a two-dimensional graph of everything the human biology is known. and we train the algorithm when we say this drug, insulin, is a really good treatment for diabetes. This drug, psiltoxinab is a great treatment for chaltoxamab is a great treatment for chaltoxamins. We do that for 9,000 that we know work, which is basically the shows you watch all the way to the end. And then we also say, these drugs definitely don't work for these diseases because we know that trials have been done and they don't work. Those are the shows you watch for one minute. And then we say, okay, algorithm, now look across every other drug and every other disease and give me a score from zero, which means that there's no connection to one, which means that,

wow, I bet this drug's going to work for this disease or for Netflix. I bet you're going to like this show. And give me that score from zero to one. So now you get a rank order list of every drug against every disease based on the fundamental mechanisms that connect drugs and diseases. And then I assume you do some kind. And these are FDA-approved drugs. They already have trials completed.

And then you have to do additional trials, obviously, to make sure that the algorithm was correct and that it does work on some element of the disease. That's exactly right. So after we get these scores, then what I consider the next most important, part is just getting humans to go through those scores and saying, like, maybe number one is the greatest idea ever, but maybe it's number 18 or maybe it's number 150. We start at the top, obviously, because the algorithm's telling us things at the top are good, but we're not just going to go to a clinical trial of like the first 10 scores. We have humans that go through and say, like,

this looks really good. This is important for this reason. And we have three criteria. So the first is, does it look like it really is going to work? Like, you know, for example, and I'll use insulin. So insulin obviously is a treatment for diabetes, but they're a, you know, There are other conditions where hypoinsulinemia where you have too little insulin. And so like this knowledge graph could be like, wow, insulin, you give it, it increases insulin. This disease has too low of insulin. Let's try insulin for this disease. And so one, you just want to check that the mechanism makes sense.

Like the thing that it does, like makes sense. So that's one. Two, you have to say, if it works, what's the impact here? Like, is this a disease that is deadly and there are no other treatments? Or is this a condition that maybe, and I don't mean to minimize conditions, but there are some conditions that are just not as bad as other conditions. Exima or something like that. Yeah. Yes, exactly. You know, you want, like, we want to treat everyone. We want, and I don't mean to minimize things, but like, we really want to go after the bad ones. Like the people, the things are

killing people, that's where we want to go. So that's impacting. The third one is feasibility. We want to make sure that we could actually study that drug and that disease in a feasible way. So, like, if it's an IV infusion and it's a really expensive drug or it's a disease that would require like a 50-year clinical trial, we don't want to do those. You know, we want to do those. You know, we want to to do things we can do quick clinical trials with inexpensive drugs that are ideally pills so that way we can move quickly. And so humans assess those three things, you know, biology, impact, feasibility. And then you're exactly right. Then we say, okay, these are the five things we're going to do clinical trials of. And we're just going to prove that they work and then move them forward to patients.

You said fast clinical trials. I know that clinical trials for a new, brand new drug, that takes years. But since this is already like, this won't kill you because it's already been approved for this other thing. How much time does that shave off here? So much time. I mean, if you start with a new drug from scratch, it's going to take at least 10 years of studies before you can get your first approval. That's the minimum. That's like rapid. But once that drug is approved for one thing, to prove that it works in another thing and to get patients on that drug, we can do that in months. Wow. So we actually have done that in months. There's a horrible cancer called angiosarcoma that has historically been uniformly fatal. And in 2016, we had a patient come to our

here at Penn, we found that a study was published three years earlier, that in that study, it suggested that a drug could be used for angiosarcoma. But this paper sort of is one of billions of papers that get published, so no one did anything with it. And based on the paper, we're like, let's treat this patient with this drug because, you know, there's a reason to believe it might work. Wow. And it saved his life.

It saved Michael's life. And what was so important about this is that this is a uniformly fatal cancer. And this April, so last month marked eight years that Michael's been in remission. What's important about it is that because this is such a horrible, everyone dies within a year of metastatic angiosarcoma, Michael's doctor was so impressed and couldn't believe it. He started treating all of his angiosarcoma patients with it. Sure. And one third of them had this incredible response.

Two thirds did not respond at all. But one third have like years and years of remission. And so you can imagine he started telling all of his friends who started treating all of their patients. And now here we are, eight years later, Michael's doing great. and maybe even more importantly, or just as importantly, Pembralizumab, this treatment, is recommended for angiosarcoma without ever doing a clinical trial, just because it's so clear that, like, it was killing everyone before,

and now when you treat it, people survive, that you didn't even have to do a clinical trial, and it's still the recommended treatment for it. Right, and we know that, again, we know that it's not going to just, like, randomly cause brain cancer or whatever, because it's already been FDA approved. It was already approved.

Wow. This is wild what you're doing. It's like one big game of drug-related, where's Waldo, basically? It's like the cures are hiding in plain sight, but you've got to find the Waldo that doesn't have a hat on or whatever. And it's a needle, you're finding a needle in a needle stack,

which is the biggest problem here. Yes. No wonder AI is helping. I can't even imagine doing this manually. You just the labor involved in ruling things out would take years. That's just nuts. So, okay, it's essentially off-label use

of one drug to treat something else, like how we use Ozempic to treat obesity, even though it's a diabetes drug. or I think Viagra was like a blood pressure medication, and they were like, ah, I keep getting boners. Well, wait a minute, maybe we can monetize this, right? That is amazing. So you got a bunch of federal funding, which I think is great.

Is that kind of all the money? I think it was 50 million last I checked, or 48.5, but, you know, who's counting? Well, besides you. 48.3, but yes. 48.3, yeah, you better know. Is that all the money that you're going to need for this, or is it like, hey, man, we need 100 more? How's it looking?

So this is all the money. we need to build out the best AI platform that humankind has ever used for this purpose. This is literally the federal government is supercharging our efforts so that we can make a better algorithm the Netflix has because don't you think we should use AI to match like drugs to secure people better than we might need to match shows to people? I don't know. I mean I can pick based on the little art thing and then that stupid trailer that plays even though you don't want it to. I just and then I turn it off after a minute even if I like it because I got two little kids I don't have time to watch anything. Yes, I think the drug matching might be slightly more important given your

track record of success, yes. And so, yeah, this funding from the federal government basically allows us to make a better algorithm than even Netflix for this sort of stuff. So that's what this funding does. What we still are raising funding for and what we still are very aware of is that, to your point, you've still got to do clinical trials to prove these things work. And you still have to, in Andrew Sarcoma example I shared earlier, we didn't have to do a clinical trial. So there will be some where we won't have to do a full-blown trial, but for the vast majority, we will need to do a full-blown clinical trial, which would cost anywhere from $1 to $10 million per disease. And there are literally hundreds of opportunities out there. So it's a very scalable fundraising process where it's like,

hey, you know, we can do this for five diseases or we can do it for 500 diseases. And we're just going to do as many as we can with the resources we can get our hands on to help as many people as possible. How many drugs? You need to index all drugs, right? Pretty much every drug. All 3,000 of them, yep. There's only three. That seems like such a low number somehow. Right? So these are a couple of numbers that, like, blew me away.

So one, there's only 3,000 FDA-approved drugs. Yeah. And, of course, everyone who makes drugs would be like, you're saying only, like every one of those took us, you know, a billion dollars and all this time. But there's 3,000 approved drugs, and there's 22,000 diseases. And it's like, I don't know. I think I would have maybe predicted more approved drugs, maybe less diseases. I don't know.

Same. Yeah. But it's incredible. So you have to index all of those. Man, thank God for AI, because otherwise I don't, thank God. I just don't know how you would, yeah, would take you your whole life and you'd make like a do 1% of this or something. Exactly. And is this going to be open source?

Because a lot of public money goes into a lot of private companies and then they turn our own profit and people get pretty salty about that. Yeah, so we're a nonprofit organization and we decided to be a nonprofit because we evaluated whether there was a company here. And what we decided is that it should be a nonprofit because we need to have the flexibility and the freedom to go after the disease. that are not going to be profitable. Right. The diseases that are profitable and the drugs that are profitable for those diseases,

our capitalistic market does a pretty good job of getting drugs to those diseases, right? Like, that's like why capitalism works is that like the incentives are there and we do it. Right. But what's missing are the diseases

that are too small and the drugs that are too inexpensive to be profitable. And so that's why we're a nonprofit is that we want to go where people aren't going. And so we're nonprofit, which means, you know,

obviously we can't profit at all off the funding that was given us from the government. And it also means, that as part of getting government money, you have to commit to the government. You'll make your data open source. So we will actually be sharing all 66 million scores within 18 to 24 months from now. So you basically will be able to go to our website at every cure.org. You'll be able to type in the disease of interest. You know, hopefully you have no diseases that you're interested in, but,

you know, maybe there's someone that you love that has a disease. You type that one in, you'll get a rank order score for all 3,000 drugs against that disease. You'll have to say, okay, like, what's the top five or the top whatever? And maybe they can help my love. one. Well, that's great because then there can be an offshoot of every cure, your organization in the EU, in China, in Japan, wherever, and they can go, hey, we just upload it to the database, and then the database reconciles itself every 30 days or every 24 hours or whatever, and everybody's just working on this. They take your scores and they run a trial over there on a disease that disproportionately maybe affects the Japanese population or whatever. Who knows?

They can prioritize in their own way, and everybody benefits from the This is awesome. I love this kind of stuff. This is incredible. Thank you. I know some people are going to say, why don't drug companies do this? You did touch on the fact that it's not profitable because the addressable market is essentially too small, if not enough people have a disease, and or if there's generic drugs, there's no money in testing a generic drug, right, to sell because then somebody else can just go and make it. Exactly. So you don't want to spend the money to do that. Exactly. And on top of that, for generic drugs, you can have sometimes as many as 10 different manufacturers of that drug.

And so when you have 10 people making the same drug, the price plummets to like pennies a pill. So, you know, when you're making pennies a pill, the math just doesn't add up to do like a $10 million clinical trial and now you're going to sell like a thousand more pennies worth of profit, right? That just, it doesn't add up. And so I never demonize pharma for not doing this because I really, I recognize like they're working within the system that we have.

And the system we have is a really good job of incentivizing pharma to create new drugs. And I want them to continue to create new drugs. But the system we have also makes it so that these drug companies are not incentivized at all to find new uses for medicines. And it's horrible. And as a patient who, like, should have died many times from my disease and should have never found out serolimes could save my life. I guess I should be, like, really better. Like, why wasn't this drug company figuring out that Cyrilliams could treat my disease? But I think I just realized, like, that's the system we're in.

And we just need to fix the system. And so first we need to fill the gap and then we need to fix the system. But filling in the gap is just saying, like, hey, let's go after all those cheap old drugs, and let's just, like, do the trials and prove they work. Do pharmaceutical companies also have data that they could share with you? Like, hey, we didn't run the trial on this, but, like, one of the things that happened in our other trial was it, you know, gave people erections or whatever, like the Viagra thing. I mean, surely they have some indication of their drugs doing other things that are off-label

that they just haven't commercialized. For listeners, I promise you I did not pay Jordan to say that. But like that literally, Jordan, what you asked is like, to me, the million dollar question. Oh, really? Okay. It's so important. And it's, I guess, less even a question and more, the answer is yes. Drug companies do have additional information.

They've never had a place to share that information before. And so it literally sits within the company. A drug becomes generic. And the file just like sits on some shared drive and no one ever looks at it again. My dream and the reason why I made the comment about like, I should have paid you to say it is like, my dream is that drug companies and every cure we can come together and we can create like this simple process to where if you're Merck or Pfizer, J&J, whatever company you're with, you can just share that info with us. These are your old drugs. You're no longer making money off of them. You're not

going to lose any money because you're not making money. Just share this old stuff with us. Your companies worked so hard to develop the drug to get it approved for one thing or two things. Help us figure out more things for it. You're right. The data exists. We haven't figured out the exact process, but if you're listening and you work at one of those companies and you want to try to work with us to figure out of the process, I would love to work with you. I think the first thing they're going to do is be like, okay, we need some sort of liability shield so that if this shows up in our trial data, they're not suing us. Like, you knew. Yes. So you might need legislation where it's like, once you share this stuff, you're required. You're essentially granted. Or you're protected.

Because I can see companies, as a lawyer, former lawyer, I can appreciate a company being like, do we want to open up these books? Like, what's in it for us? is a smile from Dr. Faganbaum. And what's possibly also in it for us is like a massive class action lawsuit when they say like, oh, you had this side effect and it was like understated on the packaging and yada, something like that.

So I can see that being a bottleneck. But also, yeah, it would be amazing if that could happen because what you're doing is so promising. I've read this, so maybe this information's on 100% up to date, but you've got the algorithm in an initial pilot. It says you identified 106 drugs

that might treat 147 of the 9,000 rare diseases. I mean, that's pretty damn good. You came up with 106 drugs that might treat 147 diseases and an initial pilot. I mean, that thing, I don't know how long a pilot is, but it sounds short by definition. That's a lot of progress. That was our absolute V-1,

the very first version we ran of this, and we actually run a subsequent version last March. We are so excited. I can remember Jordan if I mentioned earlier, But when we ran the algorithm last March, the number one drug that came up for Castleman disease was actually a drug that had never been used before for Castleman's. And we had a patient around the same time who wasn't responding to any of the drugs, including the one that works for me. So I told his doctor to try this drug in sort of last-ditch effort. And it saved this patient named Allen.

It saved his life. For me, that was like this insane moment where it was like, wait a minute, like this algorithm, like we've been doing research for like 70 years into Castleman. We couldn't figure this drug out. And you're telling me on our second run last March that the number one thing it predicted, a drug that had never been used before for Castleman's is going to save Allen's life, is this incredible moment in time. The potential here is so great. There are going to be false starts and hiccups.

There's going to be times where the number one drug for this disease doesn't work for sure. That's going to happen. And that's why we need a really great team to go through all these hits. But the promise is just huge. And, you know, talk to Alan, his wife, his daughter. They got this life, you know, from this algorithm, right? You kind of touched on this earlier. Do you feel pressure to use your life well now that you've been granted a stay on the death

sentence that we all have? I mean, we all have the death sentence, right? But you, sir, have gotten, like, numerous. You have a great lawyer up there. I have a really good lawyer. Yeah. Yes, I do. I think that even more than the fact that I've survived all these things is that.

that the way I survived it was this like, I don't know if I'm going to call like a loophole, but like this like sort of cheat code in the system that like just because there's not a drug for your disease doesn't mean there's not a drug that can treat your disease. Right. And like somehow that like hit me in the face and I was able to use that knowledge to save my life. And it's like, so not only did I get all these extra shots. Like the reason I got these extra shots is for this like, yeah, this cheat code that I like feel like I need to share with other people. And like while I'm here, I need to make sure that I can do as many of the,

you know, thinking about video games as many like ABC plus up-down things as I can to help as many people as I can. Combos, man. Yeah, it's, man, I just, I can't help but think we're going to look back on this interview in 20 years when you're winning some sort of Nobel Prize or whatever, and everyone's going to say, I can't believe Jordan wore a T-shirt for that conversation. And I hope that's what happens. I hope we do see that day, man, I can't tell you how relieved I am that somebody is finding a cure

for this stuff. Heart disease, like, things that are a matter. Heart disease, like, that's a matter of lifestyle choices some of the time. But when you see people dying of, I brought up ALS, which is just so terrifying. And there's no cure and it's not their fault. You can't help but feel terrified by that sort of thing. So not only is this bringing peace to those who are suffering right now, but hopefully to anxious weirdos like me who just have one less thing to worry about, right? And I appreciate your work on this. I think it's really admirable that you're not commercializing it in some way or withholding things. I mean, again, I wouldn't expect that from you, but it's just an amazing thing that you're doing.

And it's AI is only going onward and upward, right? So this is so promising. It's really just really exciting. Well, I so appreciate that, Jordan. I so appreciate you, you know, shining light on this. You can probably tell from this interview, I'm really, really excited about this stuff. I mean, I'm like, I'm so fired up about the impact we can have. And like I said, you know, when I was in med school, I thought that there was just like, you know,

Santa Claus theory of civilization where there was this, you know, workshop of elves working together. And like, we're building that workshop of elves, right? Like, yeah, we're the elves and we're working together. Yeah. Yes, I've moved up from, from Gallum to Santa Claus. That's right. From Gallum to Santa Claus. Yeah, it's like we're creating this system that I think should have been there all along. And I'm so excited about it. And I'm so excited, I'm the opportunity to be on this podcast with you and reach so many people that maybe haven't been thinking about rare diseases. And hopefully we didn't give you podcast listener syndrome that you're not worried about all these horrible diseases. That's right.

But I think there's going to be incredible progress that's going to be made. And, you know, I mentioned that we're going to share all this information with the world in about 18 to 24 months. But in the meantime, you could actually go to our website at everycare.org slash insights. And you could tell us about maybe you received a Zempic for Parkinson's disease or you, you name it. And it helped you. We want to hear from you. So if you've received a drug for a disease that it wasn't intended for and it helped you, let us know we can integrate that into our system. Help us to raise awareness. We're building out

like the total A team right now. We've got almost 20 people on our staff and we're still looking for in right now, particularly people who've worked at pharmaceutical companies to utilize their drug development experience. If you can help to spread the world we're doing, that would be amazing. And as you shared earlier, we're really, really excited to build out this platform, but we're also still raising the funds to do the clinical trials. And so if you're interested in supporting us in that way, we love that too. Thank you so much for coming on the show, man. looking forward to seeing how this tracks over the next few years. And thank you once again for what you're doing.

I just think it's truly amazing. This is so fun, Jordan. Yeah, I had such a good time. Thanks so much. Have a great weekend. Let's stay in touch on this stuff. This was awesome. You're about to hear a preview of the Jordan Harbinger show about how hormonal birth control

can affect a woman's personality and even influence who they pick as a partner. They found that women who are on the birth control pill rather than experiencing a big surge in the stress hormone cortisol in response to stressful things, they don't have any increase in cortisol at all. It seems like something in the birth control pill is actually causing women's stress response to go into overdrive. And in fact, this sort of a pattern is something that we usually only see in the context of chronic stress. Right. So people who have, for example, PTSD or people who, you know, grew up in the context of trauma, this isn't. normal. This isn't something that we see in otherwise healthy, high-functioning people.

Sex hormones have their fingers in so many pots in the body that they're going to be influencing our brain because there's probably no place in the body that has more receptors for sex hormones than the brain. Our sex hormones are part of what gives us, you know, our sort of joie de vivre. It's like part of what makes life exciting and it turns the volume up and makes our whites whiter and our brights brighter in terms of our sort of experience of the world. We've been really, really cavalier about this idea that we should change a person's personality and who they are and their experiences in the world so that way they don't have menstrual cramps. We don't yet know whether or not the birth control pill is influencing the way that women's brains

are being organized. And there's almost no research on this. It's like nobody's really stopped to ask the questions. To hear more from Dr. Sarah Hill about the problems with taking birth control, check out episode 280 of the Jordan Harbinger Show. This guy, man, he is the living embodiment of the saying that hope is not a strategy. Man, he just had to realize no one's coming to save me. Terrifying, but also kind of empowering, I guess. Loved having this conversation.

Fun conversation. Was not expecting it to be a fun conversation, but it was every drug on the market has multiple effects on the body, not just the one or two that won it approval. And I think that's really the key here. It's so, I, of course, never would have thought of that myself, but I'm not in the industry. I'm glad somebody is doing this. My gosh, no one is responsible for ensuring that drugs are fully utilized for all diseases that they can help. And that is the responsibility that Dr. David Faganbaum and his initiative, every cure,

that is the responsibility they're taking on. It's just absolutely incredible. They're basically just have to connect the dots between the research and the drugs available. And they're going to do that with AI and speed that process up. and they're partnering with pharmaceutical companies because they often know which drugs might be promising for certain diseases but are not commercially viable. So there's all this untapped knowledge

and there are untapped cures out there, which, look, maybe I'm just sort of like anxious Jordan that kind of runs at a tribe, if you know what I'm saying? However, I just find so much comfort knowing that someone is actually out there trying to find cures and treatment for this stuff, even if it's rare and wouldn't normally have a commercially viable solution or drug in development.

So bless you, Dr. David Faganbaum. Great conversation. All things Dr. David will be in the show notes at Jordan Harbinger.com. Advertisers, deals, discount codes, and ways to support the show, all at Jordan Harbinger.com slash deals. Please consider supporting those who support the show. Also, our newsletter, We Bit Wiser. We deliver something specific, something practical, something that'll have an immediate impact on your decisions, your psychology, your relationships, in under two minutes every Wednesday. If you haven't signed up yet, I invite you to come check it out.

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