← The Shawn Ryan Show
The Shawn Ryan Show
#240 Dr. David Fajgenbaum - Can AI Find Cures to Rare Diseases Using Existing Medicine?
01:41:21
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- [00:00]
A
I'm NFL linebacker TJ Watt and this is my personal best. YPB by Abercrombie is the activewear I'm always wearing. That's why I reached out to co design their latest drop. I worked with designers to create high performance activewear that holds up to my toughest workouts. Shop YPB by Abercrombie in store, online and in the app because your personal best is greater than any.
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B
When did making plans get this complicated?
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A
It's time to streamline with WhatsApp, the secure messaging app that brings the whole group together.
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B
Use polls to settle dinner plans.
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A
Send event invites and pin messages so.
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B
No one forgets mom 60th and never.
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A
Miss a meme or milestone. All protected with end to end encryption. It's time for WhatsApp Message Privately with everyone.
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B
Learn more at WhatsApp.com Dr. David Fagenbaum.
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A
John, thanks for having me.
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B
Welcome to the show.
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A
Thanks for having me.
- [01:09]
B
Hey, my pleasure. So, wow, you've had quite the journey with, with, with, with health and you made some amazing discoveries and, and I don't know a whole lot about it, but we're going to dive. Thank you for coming. I'm, I'm really excited about this. And, you know, one of my biggest fears, probably my biggest fear is terminal illness. And we started diving into health stuff last year, you know, primarily about all the stuff you were hearing on the news about red dyes and all the shit that's in foods and the water and just everything. And it really got my, my, my attention. And so I've been looking for somebody, you know, on, on the subject of cancer. And you're like, right there. So this is, this is something I've been a subject I've been wanting to dive into for a long time. So I just really appreciate your time and coming here.
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A
I'm so happy to be here and looking forward to this conversation.
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B
Cool. Well, everybody starts off with an introduction here.
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A
Nice.
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B
David Fagenbaum, Trailblazing physician, scientist and tenured professor at University of Pennsylvania's Perelman School of Medicine. Channeled your expertise in immunology and drug repurposing to tackle some of the world's most elusive diseases. Founder of the Kasselman Disease Collaborative Network to accelerate breakthroughs for rare hyperinflammatory disorder that nearly claimed your life five times. Co founder of EveryCure, an innovative nonprofit harnessing AI to repurpose existing drugs and unearth hidden treatments for untreatable conditions. Bestselling author of Chasing My Cure that chronicles your journey and is now Being turned into a film. A TED speaker whose 2025 talk, How Nearly Dying helped me discover my own cure and many more has ignited a movement to change medicine. A husband, a father, and now living over a decade in remission from Castleman's. And you have a great quote that I just wanted to share. The greatest cures often hide in drugs. We already have. It's up to us to find them.
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A
That's right.
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B
Love that quote, love that quote. So I want to do a bit of a personal story on you, kind of a life story on how this all happened. I know you were a hell of a collegiate athlete when you got diagnosed. Correct. And so we'll start there and then go through all your research, how you cured yourself and all that good stuff. But first we got a couple of things to knock out.
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A
Sounds good.
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B
Kind of funny because I was just talking about red dyes, but here's a bag of Vigilance Elite Gummy Bears made here in the usa. No funny business, no thc, no cbd. It's just candy with all the horrible shit that comes along with candy. But they taste amazing.
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A
My kids are going to love this.
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B
Right on. And, and then one other thing. I got a Patreon account. They've been with us since the beginning. It's a subscription account. And we've turned it into one hell of a community over the years. They've been with me forever. And so one of the things that we do is we offer them the opportunity to ask each and every guest a question. This is from Stephen Casey. What roadblocks exist in the current medical establishment to the types of breakthroughs like yours? And what can the average person do to advance ideas like repurposed treatments, off label use, experimental use to change the industry that seems locked in traditional.
- [04:51]
A
Yeah, I mean, the biggest roadblock is that the drugs that we already have, 80% of them are generic, which means it's not profitable to find a new use for them. And so no one's going to advance those non profitable opportunities. So someone's got to do it. You know, as you said earlier, you know, we're going to do that, but what can you do, you know, as. As he asked, you can ask your doctor, you know, is there anything else that maybe is approved for one other disease that can maybe help my condition? Connect with disease organizations for whatever the condition is that you or your loved one has. They oftentimes know about these other medicines that could be used and then just be relentless, you know, if your first doctor tells you that they're not going to, you know, help you out or be able to, you know, get you that medicine that might help you, you know, go see someone else.
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B
You know, I'm just. While we're on the subject of doctors, I mean, the health. In my opinion, the health. The healthcare industry is just a complete disaster. And I don't know exactly how it works, so I might butcher this a little bit, but you get the insurance policy, and then they have all these doctors in network. You go to those doctors and it's like they just rush to get you out of there. And so one thing that me and my family have done is we found. I don't even know what you call.
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A
It, but it's like a concierge doctor.
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B
Yeah, it's kind of like. I think that's what it is. And they don't take insurance. You have to pay out of pocket to do it. And, you know, but a lot of people, they. They don't have. They don't have the means to do that. And. And I switched because getting older, I'm over 40 now, I know shit's gonna start happening to me. And, and you know what the big thing I noticed is, you know, if I bring my blood test into, you know, a. An in network, typical MD, they look at it for about 20 seconds and they're like, oh, yep, everything looks good. And then you take it to, you know, another professional, an MD who doesn't take insurance, and they go through it line by line by line, tell you everything that's going on, order more tests, get more blood tests, go get the can. They're very proactive. And so, you know, not just for people that don't have the means, but, I mean, how do people find a real doctor, you know, when they have, you know, terminal illnesses come up? And it's. I mean, it's. It's. I would imagine you're in a. You're in a hurry, you know, to find somebody.
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A
So it's the right question. And I think that you're right. I think that some of these concierge doctors, they definitely put more time and effort in. I mean, that's sort of part of the value you get from seeing one of those doctors. But I'd also say even outside of that, just within the sort of traditional insurance system, there are some amazing doctors out there, but you got to find them. You know, the chance that. That, like, the most amazing doctor for your disease is. Is down the street from you is probably pretty low. If you've got a bad cancer or A bad, rare disease, you might need to get in your car and drive, you know, just find that person. And I think that we all, when we get sick, we all want to want our doctor, our local doctor, whoever it is, to have all the answers for us, to be able to take care of us. But for a lot of these really bad diseases that are really hard to figure out, sometimes you got to find the expert and you got to. You got to take that extra step that you don't want to take. You know, you want to trust your local doctor, but I think that sometimes you got to do that extra step to find the right person for you.
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B
Could you elaborate on that just a little bit? I mean. I mean, for those of us that have very limited knowledge in healthcare at all, let alone specific diseases, I mean, is that a Google search? Is that an AI search? I mean, how does a uneducated person in the healthcare industry know what they're looking at? I mean, how do they. How do. Where do they even start to find a good doctor?
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A
I think the first thing is a Google search. You know, whatever your disease is, you know, throw that into Google, maybe throw in disease organization, because there might be an organization for that disease. You can call someone and all they think about is that disease. They've got a kid with the disease or they have it themselves. So start out in Google, talk to that group, and they will almost always have a few great doctors they know of that know so much about it. And I think that that's the key thing for some of these really tough diseases. You know, they're really tough to treat. And so you really want to find someone who's got that experience. And in some cases, like in my case, even the world's expert didn't have an answer for me because the world didn't have an answer for how to treat my disease. And that's obviously a situation you don't want to be in.
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B
All right, thank you for that.
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A
Oh, absolutely.
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B
Let's move into your story.
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A
Sure.
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B
So where did you grow up? What were you doing?
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A
Grew up in Raleigh, North Carolina. Youngest of three. I got two amazing older sisters, and from the time about eight or nine years old, I. I set my mind on. I wanted to be a college quarterback, a Division 1 quarterback. That's like. That became my thing. I grew up in, you know, Raleigh, where NC State and UNC and Duke and those schools around there. And that became just my total obsession. I had just, like, how you got this amazing stuff on your walls. I had poster boards on my Walls with like, how fast my 40 yard time was, how far I could throw a football. And that just became all I could think about from the time I was about 8 until I was 18 was, you know, I wanted to play college football. I wanted to be a quarterback somewhere. And that was all I worked on. And I just, you know, worked day and night and then had the opportunity, got recruited by a bunch of Ivy League schools and Patriot League schools, ended up choosing to go to Georgetown for college.
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B
Nice.
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A
Which you probably didn't know we had a football team at Georgetown. We do a football team at Georgetown. Right on that, but we do.
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B
So what was going on when you got diagnosed?
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A
Well, so for me, the biggest misdiagnosis. Well, and actually, even before that, there's this major change. So I get to Georgetown, this, like, I achieved this dream, gonna play college football. A couple weeks after I get there, I get this phone call that just changed my life. And it was my dad. And he said, david, I need you to come home tomorrow. Your mom has brain cancer. And I was just sort of like, what? Like, what mom? Because she just was the most amazing person in the world. And she supported me through everything. And, you know, I'd just gone off to college and came home and learned that she had this horrible form of brain cancer where basically no one lives for more than a year or two. And I was optimistic and hopeful that, you know, that we were going to. That she was going to be the one that was going to live, you know, battle this disease. And she fought so hard, Sean, but over the course of 15 months, the cancer recurred and it progressed and, you know, and she ended up passing away October 2004. But during her battle, I saw her do so many things that, to your question, that ended up becoming so critical for me when I got into my battle. I mean, Sean, she had this horrible brain surgery where they actually opened up her skull during the surgery while they were taking out parts of the tumor and woke her up. While the skull was open. Woke her up while they were cutting out pieces of it. It's this really intense, crazy surgery. They closed it up. She came out in the. In the waiting area and they took her back. And I remember my dad, my sisters and I going back to see her and we were so nervous, like, is my mom going to still be there? They just took out a bunch of her brain with this brain cancer. Is this going to be the same person that we've loved and just the most amazing person in the world? And we get back and we see her, and she's got this wrap around her head and a bulb coming out of. Out of her skull. And she looks at us and she pointed to her head and she said, chiquita banana lady. And we just burst into laughter like she thought she looked like the chiquita banana lady. And we were like, oh, my gosh, like, we've still got our mom here. Like, she's still here. This is who we loved before. But it showed me that even in the midst of literally the worst surgery you could ever go through, she was thinking about us. She wanted to make a joke for us, which to me was just this, like, incredible selfless act. But she passed away, As I mentioned, 15 months after that surgery. And just before she passed away, I promised her I would dedicate my life to trying to find treatments for patients like her. I said, mom, I'm going to be a doctor. I'm going to try to find drugs to help people just like you. And she loved the idea. She had very limited speech towards the end of her life, and the two words she could still say were unconditional love. And she said, unconditional love. And I was like, all right, I got to do this. And so I decided to go into medicine. I was pre med. I went to Oxford for grad school, Penn for med school. And I was on my way to fulfilling the promise to my.
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B
You were 19 when that happened?
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A
I was 19 when she passed away. That's right, man.
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B
You know that when I lived in Florida, I came home from a deployment when I was contracting for CIA. And I had a neighbor, her name was Wendy, and beautiful woman, beautiful person. Two twin boys that were graduating, getting ready to graduate high school. And she came over and told me that she had brain cancer. And I was like, I didn't know what to think, you know, I was like, oh, you'll get through it, you know, And. And. And I mean, went on a deployment again, came home two or three months later, man, she was like a totally different person. I. I just. That was the first time I realized how. How bad a brink that this is where my fear that I was just telling you about derives from. And I remember, you know, watching her, she gained a tremendous amount of weight, lost all her hair, and it got. It. It got so bad that you could go talk to her and you knew that she could unders. It looked like she could understand what I was saying, but she. She couldn't formulate the words and get them out to me. And you could just see, like, tears building up. In her eyes, because she makes me. Makes me sad right now because I just had a tremendous amount of respect for her. And like I said, she was a beautiful person. And she held on. She held on. I think her kids were juniors in high school actually, at the time. And it was like a week after they graduated high school, and they got their. They knew where they were going to go to school. She. I mean, she held on for that long, and I was just like, holy, man, that stuff is nasty.
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A
It is.
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B
And I just. I just wanted to share that. And, I mean, but thank you for sharing that.
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A
And. Yeah, I mean, and what, you know, Wendy's kids went through to lose their mom at that age, it's heartbreaking. It's totally heartbreaking.
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B
It's heartbreaking. And. And it's also, I mean, the amount of suffering that Wendy, your mom, People with brain cancer endure. I mean, and to hold on, to have the courage and the drive and the will to hold on, to know that her kids are gonna be okay, you know, with her gone, it makes me choke up right now. But, I mean, it's. Man, I just don't wish that on anybody. Anybody.
- [16:12]
A
It's the worst. And I mean, and that same feeling of, like, not wishing on anyone. I mean, for me, it just. There was just this something that just clicked in me and just snapped, which was like, I'm going to dedicate my life to getting revenge against these things, because brain cancer is one of the worst ones out there, but there are some other just horrible, horrible diseases. And it was like this disease just took my mom, and I'm going to spend the rest of my life, however long I've got, getting as much revenge as I can on as many of these horrible diseases as I can.
- [16:41]
B
And you made that promise to her?
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A
I promised her.
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B
How did you. What did you say? She.
- [16:47]
A
She said that she was concerned about how I would be after she was gone. She was worried about me. And this is a couple weeks before she passed. And. And I said, mom, I'm going to be okay, and I'm going to dedicate the rest of my life to. To trying to find treatments for people like you, for patients like you. And I'm going to just do this until I help as many people as possible. And I knew that meant I would want to go to medical school, but I, like, still didn't really know exactly what that meant. And I also told her that I would start a grief support group for kids in college that were dealing with grief and loss. I also didn't know what that was going to really entail. But now I just promised my mom these two things on her deathbed.
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B
And.
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A
And like I said, she responded by saying unconditional love. And so for me, it was like, all right, I got two things I gotta do in this life. I gotta support other college students that are coping with the death of a loved one. We named the group amf. My mom's initials were. Her name was Ann Marie Faga.
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B
Mom.
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A
Her initials were amf. And we started this group that stood for Ailing Mothers and Fathers. It's been over 20 years. It's actually still exists. It's now called Actively Moving Forward. And so I knew I had to do that. And then now I knew I also had to make sure that as long as I'm breathing, that I'm fighting to try to find treatments for. People.
- [18:09]
B
Commend you for doing that. Let's move on with the, with the journey here.
- [18:13]
A
Yeah, so, you know, we get to. Now I'm a third year med student making progress towards this dream. Even had just finished an OBGYN rotation. I helped to deliver babies into the world, which is sort of like a pinnacle experience in medical school. And then I started feeling more tired than I'd ever felt before. I mean, think about the hours you worked, you know, fatigue. And this was a fatigue that I'd never felt before, even as a med student. And I noticed these lumps and bumps in my neck. I noticed fluid in my ankles. And I was really healthy. I was like, what's going on here? I don't know what's going on. Horrible abdominal pain. So I took an exam in the hospital, and I was feeling so unwell that I basically stumbled down the hallway from where I took the exam to the emergency department, told them about my symptoms. They ran some blood work, and the doctor came back really rapidly and he looked at me and he said, david, your liver, your kidneys, and your bone marrow are shutting down.
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B
Holy.
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A
We have to hospitalize you right away. And I'm like. I'm like, wait, what? Like me?
- [19:18]
B
How fast did this come on?
- [19:20]
A
This was about two weeks of symptoms. I went from. Within two weeks, I went from like, I was as healthy as you could be. A few months before that, I'd won a bench pressing contest in the state of Virginia. Like, I was as healthy as you could possibly be. And. And then all of a sudden, just now in the ICU or sorry, first hospitalized, within a couple days, I was in the icu. I had a retinal hemorrhage that made me temporarily blind in my left eye. It's visions back. I needed daily transfusions to keep me alive. I was on something called dialysis because my kidneys weren't working. And like literally I was, I was actively dying. I mean, everything, everything was shutting down. I was active dying. And we didn't know what it was. Like, the doctors are like, we don't know what this is. Like, maybe it's an autoimmune disease, maybe it's lymphoma form of cancer. But like, whatever it is, we got to figure this thing out really quickly because it was killing me. And I got more and more sick. So sick that my doctors told my family that I wasn't going to survive. And so my family came into town, my best friends came to town. Like literally one by one marched in, we snot cried, we hugged. I said everything that I ever wanted to say to them. They said goodbye to me.
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B
Holy shit.
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A
Yeah. This is when I was 25 years old and kept getting more and more sick. And so at a certain point, my family had a priest come in the room and read me my last rites because they were sure that I wasn't going to make it. And fortunately, right around that time, they did something called a lymph node biopsy where they cut out my lymph nodes because they thought I had cancer of the lymph nodes called lymphoma. And when the doctors looked at it, they said, we don't think this is lymphoma. We think it's something called idiopathic multicenter Castleman disease, Which I was a med student, I'd still never even heard of it before. But basically it's a disease where your immune system attacks your organs until you die. It just destroys you and kills you. But the only thing they knew to try was chemotherapy. They were like, well, if your immune system's trying to kill you, maybe we'll try to kill the immune system with some chemo. And so they gave me chemo in this last ditch effort right around the time I had my lacerates read to me. And it just sort of kicked in just in time. And I survived that, but then I would go on to have a bunch of relapses.
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B
What, what is it? What's going through your head as a 25 year old man knowing that you, you're being told that you have a terminal illness. I mean, you're saying goodbye to your, your family. You got a priest reading your last rites. I mean, how do you handle that?
- [21:40]
A
It Was. It was.
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B
I think about this all the time. If it were to happen to me, because it's. I mean, these. These things just that they seem to be more and more. It's like every day.
- [21:48]
A
Yeah.
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B
You know, I hear somebody else. My mom got diagnosed with cancer. My. You know, my. You know, my. My friend who. My friends. Like, all these. It's just. It's like every day.
- [22:00]
A
Yeah.
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B
You hear somebody else is diagnosed with cancer.
- [22:04]
A
That's right. Yeah. I mean, it was. It was heartbreaking. I was devastated. I had this amazing girlfriend, Caitlin, that I wanted to have a life with. I'd made this promise to my mom. I was going to treat all these patients, and I was going to discover all these. These treatments I wasn't going to be able to follow through on. I just felt like there was just so much that I was never going to experience that I wanted to so badly. And I didn't have any regrets about what I did in life, but I just had this feeling of regret about things I never would get to do or that I never got to do. And I was just heartbroken. But I think that I ended up spending about six months in the hospital in critical condition. And I think about some of the things that you've gone through as a soldier and sort of just fighting one day at a time. And I think that there's three things that helped me to get through that. Those six months of survival. And I'd love to hear if you've thought about these in the same way, but for me, it was like, for the entire six months, I kept thinking about what I wanted for my future, which I kept visualizing, like, a family with Caitlin. I kept visualizing, like, me in the lab trying to find drugs for patients. I had to have this vision for what I was fighting for. So that was the first thing. The second is that I had this, like, amazing support group around me. My dad, my sisters, Caitlin. Like, they were literally holding my hand, like, giving me strength. I could feel their strength from the way they were holding my hands, from their voices like that. That gave me strength. And then the third thing is that it really was this, like. It's this cliche of, like, one step at a time or, like, one breath at a time. But it was. For me, it really was one breath at a time. Like, if you told me at the beginning of the six months, like, david, you're going to suffer the most horrible pain for the next six months, every breath you take is going to be horrible. I gained 100 pounds of fluid like, you're just going to be in constant agony while your organs are just. Are being destroyed by your immune system. There's no way I could have been like, I can do this for six months. But I knew I could do it for like, an hour. And then, like, all right, I can do it for an hour. Maybe I can do it for two hours. And then those hours just started stacking up. All right, I did for a day. Like, I can keep doing this as long as I've got my family around. I couldn't have done it if I was on my own, but as long as I've got them stuff supporting me, I can do this. And all of a sudden, they stacked up. And then. And then I made it through.
- [24:12]
B
Did you ever come to acceptance?
- [24:16]
A
Well, I. I don't know if I would say acceptance, but there was one point where I was ready to give up, where I started slowing down my breathing. And my family was around me, and my sister Gina was holding my hand, and everyone was, you know, saying goodbye. Just had my last rites read to me, and it hurt so bad. Take every breath. And it was just like I was fighting. And then I started to slow down, and I was gonna. I was gonna let go. And I heard my sister Gina. And I can picture it. I can hear it. And she said, just breathe, Dave. Just breathe. And. And I heard that. I was like, all right, I can do this. I can do. I can do another breath. And I was like, I'm not gonna give. I'm not gonna slow down. Like. But in my mind, when I was slowing down my breathing and letting go, I was expecting that I was gonna be letting go maybe a couple days of life early. You know, maybe it's like. Maybe it's a day of life that I. You know, a day of suffering, basically, that I was gonna be. Keep sort of letting go. Like you said, Wendy, she was fighting. Like, you can fight for survival. There's that when you're at the end, you can keep fighting or you can let go. And I was gonna let go. I was ready to let go. But when she said, just breathe, Dave. Just breathe, I was like, all right, I can do that. I'm gonna keep doing a couple more breaths. And, Sean, if I'd let go, then I would have known that I would be here 15 years later sitting here with you. Like, I like. But I took that extra breath, I kept fighting, and then, thankfully, the chemotherapy kicked in, and, you know, I'm sitting here with you 15 years later, man.
- [25:36]
B
I mean.
- [25:40]
A
Yeah, if she hadn't said keep. If she hadn't said, just breathe, Dave, just breathe. I'm not here, I'm not here.
- [25:45]
B
So it is, I mean I, I often think about that. I mean, like I said when I was just talking about Wendy, you know, maybe your mom.
- [25:51]
A
Yep.
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B
You know, I mean, I think that you can, you can prolong at the very end, death. How, I mean, how does that. From somebody that, that faced it, I mean, five times, I mean, what is it just letting go and then you think it just happens?
- [26:10]
A
That's right. You're, you're fighting, you're, you've got, you've got adrenaline, you're like at cortisol, you're like literally giving everything you've got to every breath. You're like, you're, you're doing everything you can to stay conscious, to stay there, to keep going. And, and obviously, you know, I only was sort of prepared to go once and sort of let go once, but, but you know, quickly said now I'm going to keep fighting because of my sister. But yeah, with each. So that was the first one. And then two, two near death experiences happened the next few months in that six month period where my doctors again were like, he's not going to make it. And then every, all the blood work, everything said I wasn't going to make it. But I got more chemo. By the end they were giving me seven different chemotherapy drugs, like the worst chemo's they have at the highest possible doses, thinking like, maybe we can stop this somehow. And thankfully they would sort of just get me by. But then when I relapsed again a year later, and then relapsed again a year after that again, both of those times it wasn't like this is maybe going to be it. It was like this is it. Like you fought really hard, you made it. But for me, each time my doctors told me that I wasn't going to make it after that first one, I was like, yeah, but you told me I was going to make it last. I'm going to keep fighting. I'm not like, I got this amazing girlfriend, Caitlin, I want to get married to her. I don't care if I go shortly. Well, I didn't want to go shortly after I got married to her, but I wanted to get married to her. I wanted to have this family, I wanted to do these things. And so I think that there is a real ability to keep fighting. But of course for me the chemotherapy was necessary. It's not like I could have willed myself into doing this. It was that chemotherapy get my disease under control and I could keep fighting.
- [27:47]
B
Did you think about what would happen after death?
- [27:51]
A
I did. I, you know, I said a lot of prayers and I, you know, you know, I spent so much of that time when I was on my deathbed sort of sad about the things that I was going to leave behind here that I spent a lot less time forward looking into what, what was going to happen afterwards. It was a lot more just, you know, sadness about what was behind me.
- [28:19]
B
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- [31:59]
A
You've been in battle, and you.
- [32:00]
B
You know, I just. You know, it was. It was different for me. I feared a lot more than I did back then. I mean, back then, I figured I. I had thought that I had reached the pinnacle of my life. I was a Navy seal. I was, you know, CIA contractor. Where do. Where do I even go from here? You know? Yeah, I could have gone maybe and tried out for development group, but, I mean, it was pretty damn close to the pinnacle, and, you know, but. And so I just kind of always. If it got hairy, I kind of always considered myself dead already. Or. Or I just never really expected to come back from any of those deployments.
- [32:40]
A
Wow.
- [32:41]
B
You know, but. But I mean, in relation to now, I mean, that was an easy thought. I didn't. I had brothers and sisters and parents, you know, but I didn't have kids, a wife, nobody on my radar. You know, all I was doing was. Was that. And so I can't really relate, you know what I mean, to what you were going through. I didn't have a fiance. I didn't have my future was exactly what I was doing at that point in time, which was what I loved. And so it Was if I'm gonna go, this is a great way to go, but. But luckily I made it through, so.
- [33:18]
A
Yeah, glad you did.
- [33:20]
B
But you, you too, but. So let's go, let's move on.
- [33:25]
A
Yeah. So I make it through that six month period somehow, some way. And I got put on an experimental drug, a drug that was going into clinical trials for my disease, my rare disease, this disease called Castleman's, with, you know, a thousand patients diagnosed a year in the U.S. like, super rare. And we thought it was going to keep me in remission. So I went back to med school. Caitlyn moved down to Philly. We're like living together and I'm back on track. You know, I'm still leading this grief support network called amf, but I'm back on track. You know, I'm going to find treatments for patients. I'm going to finish med school, I'm going to take care of patients. And then I started to relapse on that experimental drug. And Sean, that was so hard mentally and emotionally to go through. Like, this is the drug that's supposed, supposed to work, like it's working for other patients with my disease. And it just wasn't. I relapsed right through it. Ended up back in the ICU with all my organs shutting down and mentally to go through that, that was really, really tough. And my doctor explained to me, this is now for the fourth time, you know, David, you know, you're actively dying. This is, it's unlikely you're going to survive this. And the drug you were just on is the only drug that anyone is working on for your disease. There are no more leads like, this is it, the drug you're on that you just relapsed on. This is it. There's nothing else. And I remember my, my dad and my sisters and, and Caitlin were around me and I remember there was like a minute or two of us just like crying our eyes out. Like, this is, you know, my, this is the world's expert. This doctor was in Little Rock, Arkansas. He's like the world's expert for Castleman's. And I'd gone to see him just like we're talking about earlier. Like, you know, you go to the expert and he's telling me like, there's nothing else, like, this is it. We tried everything. And he said, I'm going to give you the chemotherapy that you got in the past, all seven of those chemotherapy drugs. I'm going to give him the highest possible human dose we can give. Let's Hope they work. But you're. You're approaching the lifetime maximum of chemotherapy. This one drug called atramycin. We're not going to be able to keep giving you more, and this stuff's going to stop working. So, like, you just sort of need. Need to be prepared for that. And so we were balling our eyes out, and then when the doctor left the room, something sort of clicked the same way that it clicked with my mom. And that's when I told them that I'm going to dedicate the rest of my life, however long that is, trying to find a treatment for Kasselman disease. And I didn't know what that would be. And frankly, I didn't have a billion dollars in 10 years to create a new drug, which is about how much time and money it costs if you want to make a brand new drug. So I didn't have the money, I didn't have the time. But I had a really simple and important realization, and that was those seven chemotherapies that I kept getting that kept sort of barely saving my life. None of them were made for Castleman disease. They were all made for cancer of the lymph nodes for lymphoma, but they were saving my life from Castleman. So I was like, well, wait a minute. You're telling me there's no more drugs for Castleman disease, but you just use seven drugs for lymphoma? And those just saved my life. So, like, what if there's an eighth drug for lymphoma? Or what if there's a ninth drug for something else that could work for Kasselman's? And my doctors were sort of like, well, but there's nothing else that we know of. And I'm like, yeah, but we tried all 4,000 drugs for Kastelman disease. And so that became my just total, like, locked in focus. It was like, I can't develop a new drug from scratch. I want to get married to Caitlin, have a family. I want to develop drugs and treat patients. Like, I got to find a drug that already exists for something else. And then I got to try it on me. And that became just my total focus.
- [36:55]
B
Where do you start?
- [36:57]
A
So to start, I spent a lot of time just sort of researching online. Like, are there any case reports of doctors trying different things? Like, it happened in Japan. There was a doctor that was trying these different drugs. And so then when I relapsed for my. And had my fifth deadly flare, I actually started trying those drugs that were being used that had been used in other Parts of the world. I asked my doctors, you know, would you prescribe this drug? It had been used in Japan, and we tried it and didn't work at all. And I said, well, can you try this other drug? It was used for a disease like Castleman's, and that drug kind of worked, but I just relapsed right through it. I ended up back in the icu, and I felt so disappointed because I had spent that year thinking about what could be tried. And we tried these two drugs. But the third thing I had done was that I started storing my blood samples every couple weeks in the freezer at a lab at upennial, because my belief was if I relapse, and I thought I probably would, that I needed to get those blood samples so I could figure out what was going wrong, so that way I could target it. I needed to get, like, basically some evidence to figure out what to go after. And so, thankfully, I survived that fifth episode again, again with the seven chemotherapies. And when I got out of the hospital, and actually, even while I was still in the hospital, I turned to my sisters and to Caitlin, and it was like, let's get all the samples we can. All those samples that are in freezers, the lymph nodes that are here and there, get them all to Philly. I'm bas. Basically going to go to the lab, and I'm not going to leave until I figure something out. And so got back to Philly, and then I just worked basically day and night running experiments on. I thawed those blood samples, started measuring proteins in the blood, measuring what those immune cells were doing. And I eventually identified that a communication line in the immune system. You've got all these immune cells all over your body, and they got to communicate with one another. And I discovered that one of those communication lines was turned into overdrive. Sort of like it. To me, I thought of it as, like, it seems like maybe the fire alarm has gone off in my immune system, even when it shouldn't. It's like a false alarm. And so therefore, it's attacking everything. And what was really important about that discovery, Sean, is that there's a drug that's been around for decades that can turn that communication line off. And it was made for organ transplantation. So, like, if you were to get a kidney, your immune system would attack your kidney, that new kidney, that transplanted kidney, unless you took this medicine, which would prevent your immune system from. Of attacking that transplanted kidney. And that drug turns this one communication line off. So I went to my doctor, a doctor in D.C. and I was like, hey, would you consider prescribing this? And he's like, well, it's never been done before. For Castleman's, like, it could cause problems. Like, it could turn things in the wrong direction with your immune system. Maybe this could kill you. And I said, well, but I've already died. I've almost died five times and I'm out of options. And so he prescribed it and so I started taking it. And it's. Sean, it's now been over 11 and a half years. I've been doing great on this drug. No, no relapses, just full remission.
- [39:41]
B
Wow. Do you still have to take.
- [39:43]
A
I take it every day. I take my three pills this morning. And you know, the moment that that drug, that these drugs are, these three pills started working for me, Sean, I immediately have gone into this just total focus and obsession. Like, holy shit. Like, how many other drugs are made for other diseases that could treat more diseases? You know, like, this drug wasn't made for me. That's saving my life. Are there other drugs that are out there that could treat more diseases? And are there people suffering today that could actually benefit from a drug that's already sitting in their cvs? Because I shouldn't be here. I mean, I'm alive thanks to this medicine that I discovered. But if I had died at any point in those previous three and a half years, we wouldn't know that sirolimus could treat calcimans. There's thousands of people around the world that are benefiting from this drug, and it's like no one would have figured it out. How many more of these hidden cures are just sitting there? Sitting there?
- [40:31]
B
Did you, did you ever, I mean, did you talk to the doctor in Arkansas about this? I mean, what, what was that conversation like?
- [40:40]
A
Yeah, I talked to him about it. You know, he's, he's, he's incredible. And I, I still work closely with him. Yeah, I mean, he, he basically said, look, David, it's never been tried before, it's probably not going to work. But there's probably not too much downside or to your point, even if there is a downside, like, I'm already going to die from this disease, so, like, we should at least give it a shot. But there was no data. It hadn't been using a human before with Castleman. So, like, I can understand the hesitancy because, like, it could have turned things even worse. But it also, it was, it was sort of my, my last ditch effort to try to stay around.
- [41:14]
B
What did he say afterwards? He.
- [41:16]
A
You know, it was sort of a test of time because, you know, I started feeling better. My blood results started getting better. Like, it was clearly working early on, but I'd gotten better multiple times before, and then it came back within a year. And so I sort of wasn't willing to get too excited. I just sort of was like, all right, it's gonna be a test of time. Cautiously optimistic. And I started taking it in January of 2014. And Caitlin and I, our wedding day was May 24, 2014. So it was like, am I gonna make it to May 24? It was sort of this countdown.
- [41:46]
B
Wow.
- [41:47]
A
And we made it to May 24, and my hair grew back, like, just in time for wedding day, because all the chemo, like, it came back just in time. And, like, wedding day, you're like, my hair's back. I made it to May 24, 2014, and we had the most amazing. Like, every wedding is amazing. This wedding was, like, extra special because everyone that was in attendance was like, I can't believe this is happening. Like, I. And I. I couldn't believe it was happening. Like. And then, of course, you know, when you think about, you know, saying, till death do us part, it's like, it has a whole different meaning when you know that the person you're marrying. And for me, Caitlin, that, like, she was there with me through everything.
- [42:23]
B
We had a little conversation before the interview about how you guys were engaged, and you had a question for her. Could we revisit that? Absolutely. What an amazing woman.
- [42:31]
A
She's incredible, isn't she? Just with me through everything. And so, yeah, the question I had for her was right when I finished those six months in the hospital, Sean, you've seen the picture of me. My head's bald from chemo. I've got this huge belly because of my liver. My kidneys weren't working. And actually, I'll tell a story about that in a minute. And Caitlin came down to visit me in North Carolina. That's where I've been hospitalized. And we're sitting on this couch at my sister's house, and I got my hand over my head. I remember just being like, caitlin, you know, I've got a terminal illness, and are you sure you want to be with me? You could find so many amazing people. Like, you're amazing. Are you sure you want to be. Be with me? I'm gonna be sick. And, like, I don't know how much longer I have. And I remember she looked at me and she, like, looked offended. And I was like, wait, what? She was like, of course I do. Like, why would you even question that? Like, absolutely, I want to be with you. And then what I was saying to you, what I was joking about, I was like, once you said that, I was like, all right, I'm not going to ask you anymore.
- [43:37]
B
Like, I'm going to take that.
- [43:39]
A
You know, you've told. You've said it. I've warned you. And you said you want to stick around with me. And so I never asked again. And she's just been amazing. She's by my side. But I got to tell you the story from just before that conversation, right before I was, or about two months before I was discharged from the hospital. It was New Year's Eve 2010, and I was just sort of. I just got in chemo, and I just sort of, like, finally well enough to walk around the hospital, and my dad and I decided to do a walk on. On December 31, New Year's Eve night, about 8pm and so I've got this huge belly, my head's bald from chemo. I've got. Got my infusion that I'm rolling with. And we pass by the family waiting area on the cancer floor, and there's a guy who's, like, visibly drunk. He's sort of, like, swaying in his chair on this unit. And we come by the next time, and he's fallen onto the ground. And so my dad runs over to him and helps him back into his chair. And he looks at my dad and I, and he says, thanks so much. Good luck to you and your wife. And we're like, well, wife, what is he talking about? Then I looked down at my belly, and I realized he thinks that I'm my dad's pregnant wife and that we are walking laps to deliver our baby on New Year's Eve. And so I turn to my dad and go, man, dad, you've got an ugly wife. And we just die laughing. But, like, that's what I looked like, Sean, when Caitlin was, like, offended that I was like, are you sure you want to be with me? Like, that tells you how committed she was to me.
- [45:07]
B
Wow, that's amazing. Is she a medical professional, too?
- [45:10]
A
She's not. She used to work in the fashion industry, and now she's full time with our kids. She also helps a lot with Castleman's and every cure and raising awareness.
- [45:19]
B
What was the drug that cured you?
- [45:22]
A
The drug's called Sirolimus. The other name for it's rapamycin. And that's a drug that maybe some of your listeners will be familiar with. Rapamycin is an MTOR inhibitor, and actually it's thought to have some anti aging properties. And so sometimes people take low doses of sirolimus or rapamycin. I take a really high dose. Like my dose destroys my immune system.
- [45:41]
B
Damn. Have other people with Castleman's been treated since then?
- [45:48]
A
Yeah. So once it started helping me and once the months and the years started going by, right around the time, actually, I joined the faculty at the University of Pennsylvania to build a center to do more of this, basically to study the immune system to figure out, are there drugs that already exist that you could repurposed. That became my life's mission. So I started that at Penn, and then we started treating Castleman's patients with this medicine. And it actually worked for the first three patients that we treated. And I was sort of like, oh, my gosh, maybe we figured it out. Maybe this is going to work for everyone. It turns out that it works for about a quarter of patients, and so there's still more work to be done. But, yeah, I mean, the first patient that I saw that we treated was this young boy named Joey who was in the Children's Hospital in Philadelphia. And I'll never forget, like, seeing him just before treatment started and then seeing him a couple days later and like, seeing the blood work and seeing that things were improving days, within days, within the days he was. He was critically ill in the hospital. Within days, seeing things were starting to stabilize and they started getting better. And I would come by every day and his mom would hand me the lab test and I would look at it and I was like, oh, my gosh, Joey, this is working. And like, for me, that meant so much. He's now a sophomore in college at Temple University University in Philadelphia. I just saw Joey a couple weeks ago and like, he. He wouldn't be here if not for this drug that I came across that saved me. And now we've got patients all over the world on. It just. It just means everything.
- [47:06]
B
I mean, how does that. I mean, if it works 25% of the time, I mean, that's. That's. I mean, a thousand people a year. Yeah. In. In. In. In the US you said that have. That's 250 that are going to go on to do greater, great things.
- [47:21]
A
Yeah, exactly.
- [47:22]
B
I mean, how does that feel to you?
- [47:24]
A
It feels. It's incredible. And, you know, the feeling. And actually the thing that's most incredible, Sean and I don't know if you'd immediately appreciate this, but for me, what I found is the most incredible part is when I get to hear about what these people are doing basically in this overtime that they've got. So, like, Joey's a sophomore in college, Kyla, who we repurposed another drug to save her life. She's now trained to become a nurse. She wants to take care of other sick, you know, of people with illnesses like nurses took care of her. Michael, who has a rare cancer, we repurposed a drug for his cancer. He walked his son down the aisle a year ago, eight years after he was diagnosed with this terminal cancer. And then just last weekend here in Nashville, he walked his daughter down the aisle. And like, when I get to see, see those pictures, when I get to hear about those things that they wouldn't have done, like, for me, that's like, it's one thing to be like, oh, months or years, but it's like, oh, I got to walk my daughter down the aisle nine years after I was diagnosed with a terminal cancer. That's, that's what I just, that's just the most incredible thing for me.
- [48:27]
B
Man, that has to feel incredible.
- [48:30]
A
It's incredible. And it's, it's, you know, it's sort of like it'll really drive you to want to keep doing it, right, because it's, it's an experience when you hear about any one of these things where you're like, I just want to do this for more people. And so it's this combination of, like, when you can help people like that that means so much. And of course, in my case, every day I breathe, I can remember what it was like. But the other thing is that there's also all this suffering happening right now in the world. And there's people, as you mentioned, getting diagnosed with this disease and that disease. And every day, Sean, I'm hearing from a patient with a horrible condition or many of them. And so you sort of juxtapose, like, all of the incredible hope that you get from all the people you can help and then all of the people who are suffering right now from horrible diseases. And that's just driven us to say we've got to make sure that all the drugs that we've got that are. There's about 4,000 drugs that are FDA approved. We got to make sure every one of them is used for every disease they can possibly treat. So that way, these people suffering over here, if there's a drug for them, we got to get it to them. And it's not that I believe. Show that every patient with every disease could be treated with an existing drug. I don't believe that's the case, but I do believe that if there's a drug that could treat some of them or a fraction of them that's already at our cvs, we got to find it.
- [49:42]
B
Yeah. You know, I mean, I don't know how often this happens, but just two examples off the top of my head. I mean, Viagra was originally a blood pressure medicine, correct?
- [49:52]
A
Exactly.
- [49:53]
B
Now people are getting Busy in their 80s, and hopefully I'll be one of them. But, you know, and then the other one that comes to mind is. And I've never used it, but Ivermectin, you know, with COVID I mean, a lot of people, Joe Rogan, you know, swears by Ivermectin, you know, to fight COVID 19. And so how many other of these drugs are there?
- [50:17]
A
There are a lot of drugs that can be used in multiple ways. You know, Viagra is a funny one, because not only, as you mentioned, did it go from. From heart disease to erectile dysfunction, but it actually is also used for this rare pediatric lung disease called pulmonary arterial hypertension. Kids were dying because they weren't getting enough blood flow to their lungs. And a random doctor thought to themselves, huh, if this can increase blood flow for these, you know, older men, could it maybe increase blood flow to the lungs of these little kids? And then it was tried, and it worked. And, like, for me, those sorts of examples were, like, you would never think of pulmonary arterial hypertension in little kids as being similar at all to erectile dysfunction. Right. Like, and it's because even though the. The conditions appear very different, they share the same underlying problem, which is limited blood flow. And so there's a lot of examples in medicine. And there's another drug you've probably heard of called thalidomide. It caused all these horrible birth defects back in, like, the 50s. That drug can treat leprosy, and also this rare can. Or this blood cancer called myeloma and leprosy and myeloma, again, they seem so different, but they share the same underlying problem. And so it turns out that just like you said, there are drugs that can do one thing in the body that can actually have an effect across multiple diseases. And typically, this is discovered through sort of random chance. Like this doctor I mentioned in Houston who was like, huh, I wonder if Viagra could be useful for these kids. It happens sort of randomly, and there isn't, like, a system that exists. There's never been an entity, whether it's in the government or within industry, that's just been focused on saying, okay, among the 4,000 drugs that are approved that are available, what are all the other diseases they can treat? And because it hasn't been done systematically, I could discover a drug like Sirolimus could save my life. And, you know, drugs can be found, like tocilizumab could be used in all these different ways. So there's all these drugs out there, and there's just never been an entity to say, like, we're going to match in everything we can.
- [52:10]
B
So how do you. I mean, how many drugs have you. How many drugs have you personally found that treat.
- [52:17]
A
We've advanced 14 drugs for 14 for diseases they weren't intended for.
- [52:21]
B
14 drugs?
- [52:22]
A
Yeah, 14. Is that incredible? And that's in the last just 11 years, you know, since, you know, Sirolimus, of course, being one of them. And that's primarily from my lab at Penn, where we're focused on just a few rare cancers and inflammatory diseases. And so about three years ago, I'm sitting here thinking, okay, in our small lab at UPenn, we're advancing at that stage, it had been over 10 drugs for diseases they weren't intended for. It's like, how many more are there out there? And what was so important that this came up about three or four years ago is that one of my really close friends from medical school, Grant Mitchell, was really pioneering the use of artificial intelligence to use medical record data to try to figure out subtypes of patients that could benefit from one drug or another drug. And we came together and we said, what if we could utilize artificial intelligence to scan across every drug and every disease? Like, my lab works on a few diseases and a few drugs. What if we could actually scale what we're doing for these few? But to all, like, what if we could use AI to look across all of the world's knowledge to come up with how likely every drug, all 4,000 of them, are to treat every disease, all 18,000 diseases. And if AI can help us to figure out what looks most promising, then we can do the hard work afterwards. We can work in the lab, we can do the clinical trials, we can do what's needed to prove it, but let's actually start by using AI to make these matches. And so Grant and I co founded a nonprofit called EveryCure, along with Tracy Zakora, our other co founder, which is on this mission, which is to save and improve lives with the drugs we Already have. And we start out by using AI to scan everything, the world's knowledge of everything versus everything to find out the very best opportunities to take forward.
- [53:57]
B
I would do anything to protect my family. But there's always that one worry in the back of my head. If I have to use my firearm in self defense, who's got my back? The truth is the justice system isn't always just. I've uncovered story after story of corruption good Americans who did the right thing, defended their families and yet still had their lives turned upside down. And that's why I joined uscca, the US Concealed Carry Association. They've helped thousands of responsible gun owners with legal preparedness, training and support before and after a self defense incident. If you've watched my channel long enough, you know I've always said preparedness is more than just training and gear. It's a mindset. And because crime is on the rise in America, which we can all see, you'll need more than just a gun to protect yourself. You'll need a plan. Go to uscca.comsrs right now to learn more. That's uscca.comsrs and see how a membership can give you and your family that peace of mind you've been looking for before, during and after a self defense situation. Once again, that's uscca.comSRS do it. Wow. Let's. I want to get into that more in depth. Going back a little bit. I mean you're researching, I mean how many drugs are there? There's 4,000, 4,000 drugs. I mean there's a lot of conspiracies around pharmaceutical industry and that they don't want to cure cancer, they don't want to cure these drugs. They just want to promote, prolong, you know, in, in. Basically what I'm getting at is they just want to make money. They don't really give a about people's lives. I don't know if that's true or not. You know, a lot of conspiracies running wild in the world today. But, but one question I, you know I have is, I mean when you find a drug like this, especially the one that you were just talking about, that was kind of a sleeper back that they were using it in the 50s. Yeah, it's a little idea, birth defects. I mean I don't know what company developed that but I mean do these, when you're taking a drug that's, you know, that's a Pfizer drug or whatever, are these companies helping you do the research? Are they funding It, I mean, because they stand to make a lot of money if you repurpose the drug and you do the research. Correct.
- [56:37]
A
It's a great question. And it ends up that it's like such. It's so much more complicated than it should be. And the reason it's complicated is that once a drug gets approved for one disease, it has about an 8 to 12 year lifetime before it goes off patent, it becomes generic. So basically, drug companies, when they develop a drug for one disease or a couple of diseases, they've got an eight to 12 year clock before it becomes generic. And once it becomes generic, then anyone can make a copy of that exact same drug. And they all make. There might be 10 people making the same drug and the price plummets because it's all the identical drug. And so drug companies start making money once their drug becomes generic. So they have to think in those eight to 12 years, what are the diseases that are most profitable? And so they tend to go after the most severe diseases because the most severe and the most common diseases, because that's typically where they're going to be able to charge the most amount of money. So how common is it and how severe is it? That's usually where they go. But they can't typically go after a lot of different diseases because they want to really focus on maximizing profit for the few they can. So, you know, it's not that they're avoiding diseases. And again, this is partly my opinion, but I'm saying it as someone who, you know, lost my mom to cancer and who personally has battled these horrible diseases. If I was seeing things like people hiding cures, I'd be the first person to talk about it. What I'm not, I don't see that. What I see is that drug companies focus their drugs on whatever diseases they can make the most money on in those eight to 12 years because they're businesses. And the moment that drug goes off patent, all research stops. So what that means is that we've got 4,000 drugs, well, 80% of them are already generic. So there's no drug company that has any interest at all in selling more doses of that drug because there's 10 manufacturers and they all sell them for a penny a pill. And so the problem is that in my opinion, the problem is not that drug companies are not pursuing these additional uses. The problem is that. But if I discover that ruxolitinib can be useful for a new condition after ruxolitinib goes off patent, I gotta figure out a way to Drive forward the science for it. I gotta figure out a way to get, whether it's the government or philanthropists or individuals to donate to do the research. Because the drug company is like, hey, I made it a few years ago, but 10 other people are making it right now and I don't make any money off of that drug. I'm onto another drug now. And so I think that that's a problem in our system is that 80% of our drugs are not profitable to find new uses for them. So that means someone's got to stand up and do the work, right? It's like whether it's the government or some entity. And so that's where we at everycure said like we figured someone else was doing it. Like when I got into this, I'm like, there's gotta be someone who's doing that. And it's like, oh wow, there's no one who's picking these things up once they're generic and finding more uses for them because no one's incentivized to do it. So, so, so we've taken that up.
- [59:24]
B
How do you, how do you fix this at scale? I mean, I have a feeling you're going to say AI, but I mean, and maybe that is the answer. Is there a better answer? Is there? Would it be? I mean, I'm just curious, you know, let's say the US government gets involved, you know, and they start to incentivize the drug companies to continue their research. Maybe, maybe they grant the patent for another 10 years or maybe they, they, they subsidize it. And I mean, what, what is your answer?
- [59:52]
A
I think what you just described, I think that's, that's the only way you can do it is that if you want to do this fully at scale, I think what you have to do is you have to incentivize these companies to say that like, yeah, you get more patent life or maybe your drug that's off patent, you can, you know, get a patent back on it. The thing is, is that if you do that, you're going to end up saving a lot of lives because that's going to drive a of lot cures. You're also going to increase the cost of health care because those cheap drugs that are generic, it's good for the healthcare system for them to be cheap. Like that means that they go from being thousands of dollars or tens of thousands of dollars a dose to like tens of dollars or hundreds of dollars a dose that's good for cost of our healthcare system. So it's going to increase cost, it's going to increase cures. And so like that's where the, that's where the challenge is, is that if you incentivize that you're going to increase, you know, pharmaceutical costs. Now I would make a pretty strong argument that even though you're going to pay more for drugs, you're going to end up saving the healthcare system in the long run because people are going to spend less time in the hospital, they're going to have less other issues, less comorbidities because you're going to be treating the actual diseases and they're not, you know, with the drugs we already have. So it ends up becoming probably, I think close to a wash or a cost saver. I mean what I think is needed is for the federal government to also just rather one is you can incentivize the drug company to do it or you can just spend on proving these things work and then use the cheap version of it. You know, use the drug that's already out there. And that's basically what we're doing right now. At every cure we actually have a federal contract with a US agency called ARPA H where they are actually funding a lot of the work that we're doing and we're finding new uses for medicines that will end up saving money to the health care system without actually, you know, creating these sort of incentives that maybe aren't aligned.
- [61:35]
B
How big is your team?
- [61:37]
A
We're about 50 people.
- [61:38]
B
50 people?
- [61:39]
A
Yeah.
- [61:39]
B
Is that enough?
- [61:41]
A
I mean I think that when you think about the world we're in, which is we got 4,000 FDA approved drugs and they're approved for about 4,000 diseases, but there's 14,000 more diseases that don't have any approved drugs. That's a crazy stat, right Sean? You know, a lot of those 14,000 are very rare diseases, but collectively we're talking tens of millions of people have these 14,000 diseases with no treatments. And so there's a huge opportunity to max to match these 4,000 drugs to these 14,000 diseases that yeah, 50 member team's not going to be able to do. So you know, I think that at some point we're going to need an effort, whether it's ours or another's, that's, that's as big as the Pfizers and the Merck's of the world that are like doing the non profitable drug development. I mean we joke that every cure is, it's a non profit drug company. Basically. You know, we're just looking for the non profitable stuff to help people. You know, we don't care what the drug was made for. We don't, you know, care how common the disease is. We just want to relieve suffering with the drugs we already have. But we joke that we're both like the biggest drug company of all time because we'll use any drug out there that can help people. But we're also the smallest drug company because we don't own any drugs. We're just using the things that are already out there. But I think that proving out the impact of what we're doing and using AI to focus us in on the right opportunities I think is important. And then as we help more and more people, I hope that that'll lead to more support. Whether it's from individuals who care about someone with a horrible disease or whether it's philanthropists or the federal government. I hope it's going to lead to more opportunities here because like I said earlier, I'm alive because of a drug that wasn't made for my disease. And there's a lot of people suffering today that could benefit, benefit from a drug we already have.
- [63:16]
B
And so you get it's, it's government funding on, in, in, in conjunction with donations.
- [63:22]
A
That's right, philanthropy.
- [63:23]
B
Where do people donate?
- [63:24]
A
So you can go to everycare.org donate and you can donate online. We're a nonprofit organization and we put every one of these dollars towards making sure that the drugs we have help the people can benefit.
- [63:34]
B
Man, that's amazing.
- [63:36]
A
Thank you.
- [63:37]
B
I'm donating.
- [63:37]
A
I love it. Thank you.
- [63:39]
B
Donate. I love what you're doing.
- [63:40]
A
Thank you.
- [63:41]
B
So let's talk about some of the other successes that, that you've had.
- [63:44]
A
Sure. So I shared a little bit about, maybe I'll share a couple of these patients. So one of them is Michael. He had, he was diagnosed with a horrible form of cancer called metastatic angiosarcoma. And that's where basically this, this cancer is in multiple places in your body. And no one lives past a year with metastatic angiosarcoma. This is 2016. And we found a study from 2013. It was just a laboratory study. It wasn't done in patients, in clinical trials by any means. It was a lab study. But in that lab study from 2013, it indicated that this one marker was up called PD L1 in a few people's tumors from angiosarcoma patients. What was important about that is that there's a drug that's really good at inhibiting PD1 that already existed from. For other cancers. It was approved for melanoma at the time and also proof for lung cancer. And so we saw that result in this paper and thought, well, maybe, maybe his tumor also has increased PD L1, and maybe that drug could work for it. It had never been used before for his form of cancer, but he was told by his doctor that they were out of options, that there was nothing else that could be done. The chemo that they had tried wasn't working. And so we actually ended up getting that test done. And it came back that it was very positive for the thing that we thought it would be from that pa. And we were able to get Michael on this drug called pembrolizumab as the first patient ever with angiosarcoma. And as I mentioned, a year ago, he walked his son down the aisle on his wedding day. Eight years later. And just last weekend here in Nashville, last weekend, he walked his daughter down the aisle on her wedding day.
- [65:22]
B
Damn.
- [65:23]
A
And this is. I mean, this drug, like, was always there. No one had ever tried it before. What's important is that this drug is also now used for other patients. Angiosarcoma. Unfortunately. Unfortunately, it only works in the number. It's about 18 of patients. And so it's not, you know, when it worked for Michael, we're like, oh, my gosh, we solved angiosarcoma. Got so excited. And it doesn't turn out that it works for everyone, but for those 18 of patients, it's everything. Right. You know, if it works for you, it is a life changer.
- [65:52]
B
I mean, if it's just one life.
- [65:53]
A
Exactly.
- [65:54]
B
I mean, it's a success because it already.
- [65:56]
A
Because the drug was already there. It's not like you had to create a new drug yet. It's already there. You just had to give it to someone. And so that, you know, is just. That, to me, you know, means the world. And that was also. That was the first time that we went into a disease outside of Castleman's or related to Castleman's. It was sort of the first time I was like, oh, my gosh, we can do this outside of the diseases that we're, you know, focused on, which was so important for us to, you know, want to keep pushing this mission forward. Another one is a young girl named Kyla who has cast women. She has the same subtype of Castro as me, the really deadly one. And she spent about a year in the hospital. Nothing was working at Chicago, at Lurie Children's Hospital, and nothing was working and one day her doctor called me late. It was, I remember during the pandemic, it was like 8pm and one night and said, you know, we've been trying things for a year, nothing's working. The drug that I'm on, Sirolimus, didn't work. Chemotherapy wasn't even working for, you know, is there anything you can try? And just a couple weeks before, a couple members of my lab had discovered that this one part of the immune system was in overdrive. Not Mtor, but something called jak. And I recommend, you know, it's early days, but like you could try a JACK inhibitor in Kyla. You know, we've, we've shown this stuff in the lab, maybe, maybe it'll work. And so Kyla became the first patient ever with Castlemans to be treated with a JAK inhibitor. And she responded so well, Sean. And she is doing so well, the damage. And she's training to become a nurse now. And like, it's just incredible that like this drug was always there. We actually have just opened up a clinical trial of that drug. We're going to study it in more Castleman's patients. Because when you do these, they're called like N of ones where you try a drug off label in one patient and it works. That's great. But you really want to get more data to prove that it works. That way you can get more patients on and you can really figure out who's it going to work for. So we have a trial that we just opened up for that.
- [67:41]
B
How do you, I mean, how, how many test subjects do you need for a successful trial?
- [67:47]
A
It's a great question. So it really depends on a couple things. The more effective the drug is, the fewer test subjects you need in the trial. Because if it's clearly effective, you could have a trial of just 20 people. But if the 10 people that got the drug all do better and survive and the 10 people don't get the drug, none of them survive, that's sort of night and day. So one part is how effective is it? Like, what's the effect size? And the other one is how common is the disease? Because really rare diseases sometimes you're forced to like have very small numbers. But if it's a common disease, you know, the bigger the better in terms of how confident you are in the.
- [68:22]
B
Result and how did, so I mean, when you find, when you, when you repurpose these drugs, I mean, how does the word get disseminated across the world, across the country and the world, you know, on, on how to cure these diseases. You know what I mean? I mean, for the everyday. I guess I shouldn't say everyday professional, because I'm sure they're very specific, trained doctors for that specific disease. But, I mean, how does the word. How do you get that out? How's it happen?
- [68:53]
A
This is so important. I mean, honestly, right now, it happens very randomly and sporadically. Like, you publish a paper in a journal and you hope a doctor reads that journal, or you give a talk. Talk at a conference and hope the doctors are there. It's very sporadic, but we're trying to fix that with every cure. And I'll share an example that has actually also got a Nashville connection. An amazing doctor named Chip Chambers had two kids born with a rare condition called DADA2 syndrome. DADA2 causes kids to start having strokes at very young ages, and they usually pass away in their teenage years because they've had hundreds of strokes. It's horrible. And about 15, almost 20 years ago, a doctor sort of randomly tried a drug in one of his patients with data too, because he thought the patient's profile looked similar to another disease. He was like, oh, I'll try this drug that I use in this disease for this one, because nothing's working for these kids. And it worked really well for that first kid. That kid stopped having strokes, and the doctor gave it to a few more of his kids with this condition. And he helped. He was great with the patients he took care of, but the word never spread. And so then Chip Chambers, you know, comes around. He has two kids with data too, and he learns about this doctor who's doing that. He's like, oh, my God, this is amazing. I'm gonna get my kids on it. Chip starts a Foundation called the Data2Foundation. He starts reaching out to every doctor around the world. He's sending emails, he's tweeting, and now everyone. Well, and another important step, we published a paper with guidelines. Okay? This is how you treat data, too. So it's out there for the world. And then he started telling everyone he could. So now every kid in the world that's diagnosed with DADA2, they get this drug, they stop having strokes, and they live full lives. But there were a lot of years between that first doctor doing it and he did his job. He was helping his patients. He did. I mean, he was brilliant to think of that. But to your point, you got to disseminate it. You can't just treat your patients. But the thing is, it's not a doctor's job to be A PR marketing for how to treat patients, right? Like their job, like take care of their patients. He did a brilliant job. But that's where I think every cure has to come in. And honestly, that's why being on a podcast with you like this, I think is so important. Because when we find these drugs, we got to get the word out to people. And being able to work with people like you and others to get it out is literally a tweet. Social media post can be the difference between life and death for someone, man.
- [71:03]
B
I mean, isn't there some type of. I mean, like I said, I have no insight into the healthcare industry other than through the podcast, but in. Isn't there some kind of a database that all physicians use and they can type in a specific disease or treatment for anything? And it's these drugs right here. These are what we do.
- [71:26]
A
The closest to that is a website called Uptodate. And the idea is that the world's expert for every disease enters that in and keeps up to date. That's why it's called Uptodate. So that's sort of the theoretical play place. However, sometimes when you use a drug, like they were using Dada2 for that rare condition or using that TNF network for data2, if it's just happening in one part of the country, one part of the world, it may not get into that database for up to date. It may be that there's sort of debate. Okay, well, it's only been used in a couple people. Like, are we sure there hasn't been a trial done yet? And so it's not perfect. Uptodate's a really good place. It's not perfect. And then the other issue. Issue is that, you know, it's updated by individual experts and so they might miss things that are here or there. And it's also not widely available. Not everyone has access to up to Date. And so like, we at Every Cure feel that we gotta make sure that up to Date pages are up to date. And we also got to make sure that we get the word out to people that don't have access to it.
- [72:21]
B
Damn, I wish there was a better way than that.
- [72:23]
A
I know, right?
- [72:24]
B
I wish there was a better way. I mean, that would just. That would. That would jet. Launch it.
- [72:29]
A
And that's what. And that's what we're hoping to do with Every Cure. And I'd love any ideas you have for how to. How to get it out. I mean, that's like. That's all we care about. It's like the drugs we got should treat all the patients who could benefit from the drugs. And it's like, we got to just figure out how to make that match.
- [72:42]
B
More podcasts. More podcasts. It'd be great if the media, the mainstream would jump on this, and it would be great if. I mean, if they had the database. I mean, it sounds like they do, but I mean, something that's. It just seems like there should be something that the world can tap into, and it lists out every possible drug and scenario that they can read.
- [73:04]
A
It should. I totally agree.
- [73:06]
B
How does that not exist?
- [73:07]
A
Yeah, it's sort of the kind of thing that we all think someone must have done or there must be something like that. And then you sort of sit around, and then all of a sudden you realize, like, if no one else is going to do it, I guess we have to do it. You know, it's like, I guess somehow these things just. Everyone's got their lane, right? And it's like sort of oftentimes we lose track and there isn't someone who's taking that big picture look like, man, man.
- [73:29]
B
Let's move into the AI stuff. So. So you're. You're utilizing AI to. To basically to do the. The. The. The initial research.
- [73:38]
A
That's right.
- [73:39]
B
How do you do that?
- [73:40]
A
Sure. So we use something called a biomedical knowledge graph, which is basically like if you took every drug, disease, gene, protein, everything you can imagine that's related to medicine and bioscience, and just put it on the wall, like, mapped it up, and then you put connections between every one of those things. So we know that Interleukin 6 is elevated in Castleman disease. And you'd put that onto your map. You would map every single concept, and then the relationship between everyone. You'd create a map that basically represents what we know about all of medicine, like every drug, every disease, every gene, every relationship between all of them, so now you've got sort of a map of what we know about all of medicine. And then we train machine learning algorithms on treatments that we know work. Like, we say, celtximab treats Castleman disease. Sirus is effective for organ transplant rejection. We train the algorithm over and over again on all the known treatments, and it gets really good at picking up the pattern of connections. Okay, if that drug treats that disease, and that drug treats that disease. And then we say, okay, now that you know what a good treatment looks like in this map of knowledge, now give me a score from 0 to 1 for how likely every other drug is to treat every Other disease. Disease. There's 4,000 drugs, there's 18,000 diseases. We're basically asking it to calculate 75 million times the 4,000 drugs against 18,000 diseases, 75 million times how likely every drug is to treat every disease. And it's between 0 and 1. So then our medical team, we look at the things at the very top. Say, what are the 0.99? What's machine learning, artificial intelligence saying is the highest, most likely drug to treat a disease? And that's where we start.
- [75:13]
B
Wow. So it sifts through everything.
- [75:15]
A
Sifts through everything. It goes through the world's knowledge. And actually, when we ran it for the first time, Sean, we know we built the nonprofit three years ago, spent a lot of our first year fundraising, but we finally hired our first data scientist. We finally ran the algorithm for the first time about two and a half years ago. And it took 100 days to run the algorithm to literally scan everything the world knows about everything. 100 days.
- [75:37]
B
Days.
- [75:37]
A
And we're like, for 100. And we didn't know it would take 100 days, but like just every day it's like slow and we don't have the results back. Finally, the results. 100 days, Sean, now takes 17 hours to scan the world's knowledge of everything to get a score. 75 million scores in 17 hours. Which the reason that's really important is because then you can actually improve the algorithm and say, that's actually not the way to do it. We want to do it more like this. You can run experiments and see, like, what's the best way to get the best results. And if it's a 17 hour turnaround time, you can just keep doing it. Wow.
- [76:05]
B
Wow. I mean, would it be a possibility that that AI database could. Could be the answer to what we were just talking about?
- [76:13]
A
I think so. A part of it could be. So, you know, when we score every drug against every disease, you now, in that database, you now would have a bunch of drugs for diseases that score poorly or that are middle level. And so there's parts of it that maybe would be not that helpful. But the things at the top, Absolutely. The things at the top very much can be so, you know, the very top for, let's say, for a horrible disease, let's say like als, there's two drugs that are FDA approved for als. They don't work very well, but there, there are two drugs that are FDA approved. That's got to be at the very top of the list. And then right below those two FDA approved drugs. There are some drugs that are sometimes tried where there's early data that should be next in the list. And then you should get into like, these sort of AI predictions of, like, well, what's AI telling us? But what I wouldn't want is for people to sort of skip the things at the top where there's like, good data and just go to, like, what AI is predicting. Because for us, like, at every cure, when we make these predictions, we look at the things at the very top. But we don't automatically say, whatever scores number one we're going to give to patients. It's like, whatever scores number one, we're going to look really deeply into it. We're going to study in the lab, we're going to do clinical trials, and we're going to figure out is it the right thing for patients, but not necessarily. We don't trust fully in AI is basically what I'm saying. It's like, AI for us is a great starting point, but there's still more work to be done.
- [77:32]
B
Gotcha. Let's take a quick break.
- [77:34]
A
Sure.
- [77:35]
B
And when we come back, I want to. I want to talk about some of the diseases that you're targeting nowadays.
- [77:40]
A
Sounds great.
- [77:44]
B
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- [82:01]
A
Yeah. So there's one of our programs. So we've got six active programs at every cure, so different drugs that we're repurposing for diseases. And one of them is around the numbing medicine, lidocaine. So, you know, when you go to the dentist, you, get an injection of lidocaine and the role that it can play in preventing recurrence of breast cancer. So, actually, if you inject lidocaine around a breast cancer, cancer tumor, there's really compelling evidence from a big clinical trial that was done in India that you're going to reduce recurrence of breast cancer and also reduce mortality from breast cancer. Now, this is an example where it's not total prevention, because it's not like it's preventing the breast cancer in the first place, but it's preventing the breast cancer from coming back, which, of course, is so important, because that's oftentimes what's so deadly about breast cancer. And it's an example where lidocaine is, like, really cheap old substance, where unless a nonprofit like ours or another nonprofit comes in, and the work's just not going to be done to push it forward. And so we're really optimistic about that. And we're actually also studying the role that lidocaine might play in other cancers as well.
- [82:58]
B
Are you studying or do you have any insight onto what causes cancer?
- [83:05]
A
Yeah. So the breakthroughs over the last 10 or 15 years really indicate that cancer occurs when mutations occur in the genomes of those specific cells. And so they're called somatic mutations. Basically means, like what? Like, we're all born with our own genetic makeup, but within the cells, let's say, in your pancreas, A mutation occurs, and that could be because of exposure to UV light, or it could be from exposure to carcinogens in the environment, what you eat. And those genetic changes, if they happen in the. If they happen in a part of the genome that isn't that important, that cell just dies, and you never even. You never even knew the mutation happened. But if that. That mutation happens to happen in a part of the genome that's important for, say, cells to replicate or maybe to grow blood vessels, then that cell now has an advantage. And then it accumulates more mutations, and all of a sudden, you have cancer. And so it's sort of this. It's. It's sort of this random set of things that have to happen for you then to develop cancer. And, of course, you can do things in your life to reduce your risk of cancer by, you know, eating well and exercise and Doing all the right stuff, because that's going to reduce the amount of those somatic mutations that occur to your cells. But it is sort of this very much random thing, which is tough because that's why sometimes young kids get horrible cancers. And it's also why you see cancers emerging in older years, because basically more of these mutations have occurred over the course of life.
- [84:33]
B
I mean, is there anything too. I've heard a lot that inflammation can cause cancer, Sugar can cause cancer. I mean, is there anything to that?
- [84:41]
A
Yeah, so the inflammation, for sure, you know, the more you proliferate, the more your cells are proliferating, which often occurs in the setting of inflammation, the more chances there are for genetic mistakes and basically mutations to occur because of increased proliferation. So, absolutely.
- [84:55]
B
Sugar.
- [84:56]
A
I think there's a lot of data that sugar plays a really important role in cancer development and progression. Like, once it starts, I haven't seen as much on it, like, sort of of causing it to start in the first place. But it's also really hard to keep track of all the research because there's just so much work being done.
- [85:15]
B
And then I've also heard that a lot of these diseases, and I might rattle a couple off that this is not true about, but cancer, Alzheimer's, a lot of these. I mean, I've read things and interviewed people that said none of these are actually organic diseases. They are potentially a product of our filthy environment. Is there truth to that?
- [85:43]
A
I think that our filthy environment contributes and probably increases risk and increase the numbers. I think all the conditions you mentioned have happened as long as we've been around. They're in textbooks from the 1700s, but they maybe weren't as common. And so one reason why they might not be as common, I think, is exactly what you said. There's things in our environment that are making them more common. The other is that we're thankfully living a lot longer. You know, we're not dying from, you know, infections, from bacteria, you know, that's in our water, for example. So we're living longer, which means there's more opportunity for these other diseases to sort of emerge. So I think that my experience with a lot of these things is that I think that there is. There is definitely a lot of truth and data backing up the idea that our environment is playing a really important role in and increasing the number of these cancers and conditions. But oftentimes it's a lot more complicated than just like, it's just the environment, because, you know, these things have been in textbooks for a lot longer than a lot of these chemicals have even been around.
- [86:43]
B
And another thing, I mean, there's a lot of. Ever since COVID it's really caught fire after Covid. I mean, there's a lot of hesitation with vaccines. There's a lot of hesitation to pharmaceuticals, you know, and there's this massive movement on, I don't know, kind of holistic type medicine. I mean, what are your thoughts on that? I think it could be, you know, I mean, I don't know. I don't really know much in this sector, but, I mean, it seems. My fear is that we demonize all of the progress that we've made with medicine due to, you know, due to conspiratorial claims. And so I'm just curious. I mean, I think there's gotta be a healthy balance here.
- [87:29]
A
I mean, there has to be. Yeah. I mean, my feeling is that I. And we just want to help patients with the medicines that are available. And if it's from a holistic doctor or if it's from sort of traditional Western medicine, or if it's from pharmaceutical companies. You know, the drug that I'm on, Sirolimus, it actually was discovered in the soil on the island of Rapa Nui in the Pacific. Like, it literally was discovered in the soil. And then a drug company figured out ways to manufacture it. And so, like, my drug is about as natural of a drug as you could ever take, but it's a pharmaceutical drug, and it's used for transplant reduction, and it destroys your immune system. And so there's. We like to oftentimes think of things as very black and white. There's like, there's the natural stuff, then there's the pharmaceutical stuff. Well, my pharmaceutical stuff was natural. We just figured out how to make. Make the exact same thing over and over again. And so it's a lot grayer than. I think that it's easy to wrap our heads around. And I think that we've just got to follow the data and like, what's. What are the drugs that can help people? And is there data to suggest that it can help people? If so, like, we should put people on them and I think try to get less caught up on, you know, is it from a drug company or, you know, what's the source of it? But I think just really just. Just actually track, like, you know, is there good data here? And to your point, earlier, like, when I was dying from my Castleman disease, there was no data for Sirolimus to save my life. I had lab data that made me Think it might. But sometimes you do follow the things that don't have much data because the alternative is that you're going to die and you just, you do that. But if you do have data on drugs, like, you know, what sort of breaks my heart is when I hear about people with terminal cancer that say, I'm not going to take this medicine because it's a pharmaceutical product. I'm going to take something else. And then you hear about them passing away and you just think to yourself, like, I wish they'd given themselves a shot with the traditional pharma stuff. And who knows if the pharma stuff would have worked. But we have a lot of data to show that it does work in some people. And we Talked about earlier, 18% of people and 20% and 25. And these things don't work in everyone, but if they work in you, and they could work in you, I really want to make sure that, that we tried in you because, you know, the work's been done to prove that it can help some people.
- [89:37]
B
What about, I mean, what, what are some of the diseases that you are targeting nowadays? What are you going after? I mean, we, we, we had a brief discussion about Alzheimer's on the break here. I mean, that, that's another massive fear of mine that it's, it seems to just be happening more and more and more and more.
- [89:55]
A
It's frightening.
- [89:55]
B
And so, I mean, yeah, so, you.
- [89:59]
A
Know, as we shared earlier, the sort of way that, that our AI platform works is we look across every drug and every disease and basically see what matches score the highest. And so we start from there. So we, we don't pick a disease a priori and say we're going to work on it. We, you know, let the algorithm point us towards a match and then our team looks into it and we spend, you know, lots of time reviewing through them. Our team has now reviewed over 6,000 of the top, top matches. It's out of 75 million. So we've got a ways to go. But 6,000 brilliant MDs, PhDs reviewing through them, looking for treatments that are hiding in plain sight. And out of the ones we've looked through, we currently have six active programs. We're actually just getting ready to add three more. So we'll have nine active programs in the next month or so that look across conditions that I mentioned earlier. The example, breast cancer is one of them. That's one of the more common cancer cancers. We've got another program in a condition called Bachmann Bupp syndrome, where it's only been described in about 20 kids ever where kids are born with this horrible rare condition where they basically, they're hypotonic, which means their muscles don't work. So they're on feeding tubes and they're basically bedbound and they would be bed bound their whole lives. But there's a drug called DFMO that's been around for a long time that wasn't made for this condition and it actually is really effective. So the kids that have been started on DFMO early in life are standing up, sitting up, some of them are even walking. The kids that are started later on in life, maybe they're feeding tubes out, but they're not quite at the same level they would have been if they were, if they were a typical child. This is why we started this organization is like maybe only a couple dozen kids are going to benefit in the short term, but maybe a couple hundred are going to benefit in the longer term. And they're going to benefit like, you know, walk into school and like, you know, running with their siblings and doing things that they wouldn't have been able to do with a drug that, that wasn't made for their condition. And so those are the kinds of things that, that's just not going to in our industry. A couple dozen kids, no one's going to take a cheap old drug, you know, and work on a couple dozen. And it's not that they're not going to work on it. I take that back because I should really emphasize that there's been amazing work done because the, the condition is called Bachmann Bup. And that's after two doctors, Dr. Bachmann and Dr. Bup, who have done just the most outstanding work in the world to advance treatments for this condition. But the point being that like, typically that's where it would stop with like, you know, this doctor and that doctor. They're doing the best they can for these kids. But us at every cure, we're trying to find as many of these as we can. So that way, to your point, we get the word out. So if you're a child in some other part of the world and you've got this condition, let's go you, you diagnosed and let's get you on the medicine.
- [92:33]
B
You know, when you're, when you're sifting through the, the, the AI program that you guys have, I mean, how do you, I mean it's still, I mean you said, I think you said 14,000 diseases have no treatments, have no. Oh, that's only, that has and then.
- [92:48]
A
Another 4,000 have treatment. So it's a total of 18,000 diseases that.
- [92:51]
B
18,000 diseases. How many drugs? 4,000.
- [92:55]
A
4,000.
- [92:55]
B
4,000 drugs. I mean that's, that is a. Even with AI sifting through all that, I mean that's, that's a lot of stuff to sift through. And so, I mean, how does the program kind of notify you? I mean, is there like a tier ranking that says, like, hey, this drug we've, you know, the AI has found may work for a spiderweb of diseases? I mean, do they rank them? How do you guys sift through all of that?
- [93:22]
A
Yeah, so we get a score from 0 to 1 for each. Every drug against every disease. So like DFMO for Bachmann, bup. Gets a score and DFMO for breast cancer gets a score. And that's probably a low score because it's probably not going to work in breast cancer. But you get a score for every match and then you look at the things at the very top. So you rank order the list and you say, what are the 0.9 nines? Which basically the algorithm is saying this is like there's some heat here, right? Like there's probably something here. Maybe it's this drug. And dfmo, Bachman Buff's an example where there's too much much of this thing and this drug inhibits that thing. And so it's like the match is being made even at that simple of a level. Like in my case there was too much of mtor, that signaling pathway, and sirolimus inhibits mtor. And so it's like it's looking for the. And most of the time it's not that simple, but it's looking for matches like that and it's going to give a high score if there's something clear like that. And then the other thing is we also generate a separate score. We call it our unmet medical need score, which is basically how bad is the disease. So we score also, the higher the score, the worse the disease. Lower score, less bad the disease. Because we want to be going after good matches for really bad diseases. As you said before, we're a 50 member team with limited resources. When you can go after any drug and any disease, like there's a lot of opportunities. But if we're going to spend our time on earth going after like the really bad diseases with the really good matches. And so we use both scores to get us started.
- [94:42]
B
So you said you actually sift through each drug. It's not each disease, it's each drug.
- [94:47]
A
And it's actually not even each drug or each disease. It's actually each drug, disease match. Like, if you look in this spreadsheet, it's like DFMO for Bachmann, bup. Lidocaine for breast cancer, Sirolimus for Castleman's. Like, that's what the row is. Like the row is actually the match. And then there's a score next to the match. And then you might not see breast cancer again until number 10,000. Like the second best for breast cancer, it might be way, way below the first best, but it's actually the match that gets a score.
- [95:13]
B
How many matches are there?
- [95:15]
A
75 million because there's 4,000 drugs and 18,000. So if you multiply 4,000 times 18,500, you get 75 million because you try every. So basically we're asking. The algorithm is like, simulate how likely each One of these 4,000 drugs would be to treat each one of these 18,000 diseases.
- [95:31]
B
That is a lot of information to sift through.
- [95:34]
A
It's insane. Yeah. And so, like, yeah, our, you know, our team of 50, we're working really hard, man.
- [95:39]
B
How many, I mean, how many? Just, I'm just curious, how many have you been able to go through so far?
- [95:43]
A
So the team of 50, we've now gone through the top 6,000. And that's like deep review, like, you know, reviewing through to understand what data exists and why it might score. Well, out of those top 6,000, we've identified about, I think it's about 60 or 70 right now that have gotten what we call a deep dive, where an MD or a PhD or an MD PhD trained person will really try to understand what are all the data for or against, like, why would this drug likely work or not work? And then out of those 60 or so, we've done deep dives. About 15 of those have then basically taken down to where, like, we have a good plan. Like, we think that if we do this clinical trial, we're going to be able to unlock this drug, helping a lot of kids or adults. And then out of those I mentioned now, like the nine active programs that we're moving forward, and we've only. So we started as a nonprofit three years ago. We spent most of our first year doing fundraising, most of our second year really building on our infrastructure. It's really only been about one year where we've had the team working hard, going through all these scores. And so the opportunities, I think, are so huge.
- [96:51]
B
How do you find the patients to do the studies on On, Yeah.
- [96:55]
A
So once we find a match that we think looks really promising, the next thing we do is find out who are the disease experts and who are the doctors that see the most patients. Is there a disease group like is for a lot of these diseases, there's a parent of a kid with a disease where they've like rallied around and created a nonprofit for that disease. We want to get in touch with them and understand their disease more. We want to understand what's missing. Could this drug really make a difference? And when we connect with them, it's like we want to help your kid's condition or your condition. Will you work with us? We've raised money from the US Government and from philanthropists and foundations. You know, we're going to bring some money into here. You know, do you want to work with us on this? And not surprisingly, there's a lot of enthusiasm because, I mean, you think about something like Bachmann Bup. Those kids, like the couple dozen that have ever been found, their parents probably weren't expecting that there would be sort of a, you know, full blown effort for their condition. And again, thankful to Dr. Bachman and Dr. Bup for all the work they've done and we're excited to work with them.
- [97:51]
B
Wow, that's, that's incredible, man. I love, love, love what you're doing.
- [97:57]
A
Thank you.
- [97:59]
B
You know, what do you think about. And this is, this is a little off, off the, the main subject here, but I've got a really good friend here. His name's Rich and he's done very well for himself. And he is, he's, he's, his whole family, like multi generational lived with him. And it was his grandpa and his grandpa had like, his legs were purple. You know, I don't think he had any feeling in his toes, you know, nothing in his feet. And he was going to a local doctor here in Nashville and this guy told him to go to Argentina. And I think it was, I think, I believe it was stem cell. And he went down to do the stem cell somewhere in Argentina. Grandpa does a stem cell. All the color comes back into his legs within like 12 hours. They're on the plane ride back home and he's telling, he's telling Rich. He's like, my feet are killing me. Like I, I, he's like, this is, this is horrific pain.
- [99:11]
A
Oh no.
- [99:11]
B
And Rich is like, hey, you know, are you okay? And he goes, yeah, I feel amazing. He's like, I haven't felt any pain in my legs in 25 years or what? Some. I mean, so, you know, in your opinion, I mean, why. Why do we have to go to Argentina for things like that? Why do we have to go to Mexico for, you know, better stem cell.
- [99:35]
A
Yeah.
- [99:36]
B
Like, what is holding the US behind on this stuff?
- [99:39]
A
It's a great question because, you know, in the U.S. and I've wondered this too, like, in the U.S. we do what are called autologous stem cell transplants for people with cancer. All the time that cancer. I mentioned multiple myeloma. You oftentimes treat people with their own stem cells. Like you. Like, you basically take their stem cells out, you give them chemo, and then you give them their stem cells back. We do that. We do what's called an allogeneic stem cell transplant. We get someone else's stem cells, like their bone marrow stem cells, and that can sometimes be curative for leukemia and for lymphomas. So we're doing it already in some settings, but I'm not sure why some of these other settings. It hasn't come forward because some of the stem cell work with autologous and allogeneic stem cells. It's been 20 years that we've been doing that in the US so I'm not sure why. Because what that tells me is that the US FDA is willing and they're open when these sorts of stem cells are effective in certain ways, maybe it's for cancer, maybe there's a different sort of risk profile because there's a big risk when you do these stem cell transplants for cancer. Like, you have like a 10% chance of death within that year from the treatment. You had a 90% chance that you might be. Not 90, cured, but you have a high chance you might be cured, but you got a 10% chance you're going to die from the stem cell transplant. And so it might be that the FDA is willing to sort of put a stamp on that sort of a risk when you've got a deadline. Leukemia, and maybe less willing to put that sort of a risk if it's not as deadly. And again, that's not from any data that I have, but that's the only way I can wrap my head around it is like, why do we do it here, but we don't do it over there.
- [101:10]
B
Thank you for the. Thank you for answering that.
- [101:11]
A
I don't know. I don't know the full answer, though.
- [101:14]
B
Well, Dave, is there anything I should be asking you that I haven't asked yet?
- [101:18]
A
There's one thing you were asking me about My mom earlier. And you asked about the last conversation. Conversation that I had with her. And she actually left a message for me even after she was gone.
- [101:33]
B
A.
- [101:33]
A
Couple weeks after she passed away. And I actually would love to read this to your. To your audience, if it's okay. A couple weeks after she passed away, my dad and I were cleaning out her purse, and I came across this newspaper clipping that I keep in my wallet. And to me, this is like. It just embodies my mom because I don't know if you can see it, but this is basically like on a piece of cardboard, probably from some cereal box. And it's like, you know, got some tape on it. This is just like who my mom was. And it's got a quote that, as you can tell, I take it everywhere with me. It's now been 20, 21 years. It says, Pope John Paul said it best in his address to the use of. In Dear young people, whether you are believers or not, accept the call to be virtuous. This means being strong within, having a big heart, being rich in the highest sentiments, bold in the truth, courageous in freedom, constant in responsibility, generous in love, invincible in hope. And like I said, I found this two weeks after she died. And I remember reading it and just thinking to myself, like, this is her message to me about how I need to live. Bold in the truth, courageous in freedom, constant in responsibility, generous in love, invincible in hope. And these are words that like, I just. I just take with me everywhere I go. And I love the idea of your listeners and your audience taking this, taking this with them as well, man.
- [103:00]
B
Thank you for sharing that. Absolutely. Thank you for sharing that. And I just want you to know it was an honor to interview you. And you're changing. You are changing lives, literally saving lives, and I mean, just bettering the world. So thank you for what you're doing.
- [103:20]
A
It's an honor to be with you. You're a true warrior. And, you know, we're fighting hard. We're fighting a battle. Like we said, 4,000 drugs, 4,000 diseases have treatments, but 14,000 don't. So we've all got to take this up. It can't just be one group here or one group there. Like, we've got to take this opportunity to make a difference, and there's a lot of drugs out there that can help people. So we're going to keep fighting. And actually, you know, I was telling you during the break about. About how we've sort of turned the castleman into this, like, warrior here. And this is like our. You know, our Castleman warrior. And I've been wearing this. Excuse me. I've been wearing this pin for. For the last about 12 years. And so I want to. I want to give this warrior pin to you, my friend. You're an older ultimate warrior. I appreciate you. Appreciate you.
- [104:05]
B
Thank you. Thank you.
- [104:06]
A
Absolutely, absolutely.
- [104:09]
B
Oh, man. It's going right here in the studio, and, man, thank you.
- [104:14]
A
You're a warrior. And I appreciate you, you know, giving me the opportunity to share about our work, because we got a lot of work to do, and it's actually going to be, you know, raising the word, raising awareness through things like this that are gonna help a lot of people.
- [104:25]
B
Well, I'm gonna tell all my friends about this, and they'll be listening to it anyway. But I hope this. I hope this podcast helps, and. And I would love to see you again, hopefully on good terms.
- [104:35]
A
I'd love that. Yes, exactly. All good health.
- [104:38]
B
Yeah. But seriously, it was an honor. Thank you.
- [104:41]
A
Thank you so much.
- [104:41]
B
Thanks, Cheryl.
- [104:42]
A
It's awesome.