The Checkup with Doctor Mike - The Doctor Who Cured His Own Disease | Dr. David Fajgenbaum

Episode Date: September 7, 2025

Head to http://www.cozyearth.com and use my code DOCTORMIKE for 40% off! And if you get aPost-Purchase Survey, make sure to let them know you heard about CozyEarth right here!Huge thanks to Dr. David Fajgenbaum for coming on the show. Check out his book "Chasing My Cure" here: https://www.penguinrandomhouse.com/books/567298/chasing-my-cure-by-david-fajgenbaum/Donate to David's organization just like I did at Every Cure!: https://everycure.org/Follow David on IG: https://www.instagram.com/dfajgenbaum/Check out David’s TED Talk: https://www.ted.com/talks/david_fajgenbaum_how_nearly_dying_helped_me_discover_my_own_cure_and_many_more?fbclid=PARlRTSAMsgyJleHRuA2FlbQIxMQABpxia0fFPCZxleDe8M77fZN7trFFh9uvuRT_EQ3f9E9glnjcir2z8_LQJWJIR_aem_PK7d-IIHk-w7hao6tjEdCgI'll teach you how to become the media's go-to expert in your field. Enroll in The Professional's Media Academy now: https://www.professionalsmediaacademy.com/00:00 Intro01:52 Losing His Mom21:00 How Life Influences Medicine31:39 Treating His Family42:48 Right To Try Legislation48:55 AI Treatments56:38 Surviving Castleman's Disease1:18:00 Trialing New Drugs1:28:50 His Wife1:30:42 Genetic Predisposition1:34:35 Fear & Mental Health1:39:56 Burden To His Family1:43:24 Regrets1:51:08 Future of Medicine2:02:45 My DonationHelp us continue the fight against medical misinformation and change the world through charity by becoming a Doctor Mike Resident on Patreon where every month I donate 100% of the proceeds to the charity, organization, or cause of your choice! Residents get access to bonus content, an exclusive discord community, and many other perks for just $10 a month. Become a Resident today:https://www.patreon.com/doctormikeLet’s connect:IG: https://go.doctormikemedia.com/instagram/DMinstagramTwitter: https://go.doctormikemedia.com/twitter/DMTwitterFB: https://go.doctormikemedia.com/facebook/DMFacebookTikTok: https://go.doctormikemedia.com/tiktok/DMTikTokReddit: https://go.doctormikemedia.com/reddit/DMRedditContact Email: [e-mail] Producer: Doctor MikeProduction Director and Editor: Dan OwensManaging Editor and Producer: Sam BowersEditor and Designer: Caroline WeigumEditor: Juan Carlos Zuniga* Select photos/videos provided by Getty Images *** The information in this video is not intended nor implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images, and information, contained in this video is for general information purposes only and does not replace a consultation with your own doctor/health professional **

Reading, playing, learning. Stellist lenses do more than just correct your child's vision. They slow down the progression of myopia. So your child can continue to discover all the world has to offer through their own eyes. Light the path to a brighter future with stellus lenses for myopia control. Learn more at SLOR.com. And ask your family eye care professional for SLR Stellist lenses at your child's next visit. You're in medical school, right? You were studying for finals?

I was a third year met student, yeah. Third year med student. What happens? I basically stumbled down the hallway to the ER. Usually it takes a while for the doctor to come back in the room with blood work, and my doctor came back really quickly. I remember him looking at me and saying, David, your liver, your kidneys, and your bone marrow are shutting down. We have to hospitalize you right away. They did full body scans and found enlarged lymphitis throughout my body.

I was admitted to the intensive care unit. I was getting daily transfusions. I was on dialysis. Gained about 100 pounds of fluid because my liver and my kidneys stopped working. I had a retinal hemorrhage that made me temporarily blind in my left eye. I'd said goodbye to my family. My doctors said he's not going to make it through this. For three and a half years, I was battling for my life.

And every time I passed by CVS, my drug was in there. All I can think about is, okay, if my drug was in there, they could save my life. How many more drugs are sitting in the CVS that could save other people's lives for other diseases? This episode's guest has to be one of the wildest medical journeys we've ever featured. Dr. David Faganbaum was a Division I quarterback at Georgetown, with his life fully mapped out until his mom was suddenly diagnosed with and died from brain cancer. This shifted his focus from football. He devoted himself to becoming a doctor to help people just like his mother.

However, in medical school, his own body crashed. The diagnosis, Castleman disease, no cure. But Dr. Faganbaum wouldn't give up. He turned the microscope on himself, chased every lead, and ultimately identified a cure that saved his own life. Now he's on a mission to save others, and he's sharing the full journey in his new book, Chasing My Cure.

I'm genuinely excited for this one. David's story is unbelievable. Let's get into it. Huge thanks to Cozy Earth for sponsoring this video. Getting ready for a game means being ready for anything. Like packing a spare stick. I like to be prepared. That's why I remember, 988, Canada's Suicide Crisis Hubline.

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Air Canada. Nice travels. I'm excited to speak with you, doctor. I'm excited to be here. It's amazing to sit across from someone who has made themselves a patient as a physician. Usually, when we talk about that in the healthcare community, we're pointing it out as a way of a doctor self-prescribing opioids or something. And there's a story about it negatively in the press. But the way that you've approached your situation really stands out and serves as a doctor.

reminder as to why I got into medicine. If we had to start with your story, to me it makes sense zooming into your college experience, everything you went through with your mom. I actually have a lot of empathy for you, not just from a humanistic side, but also from a practical standpoint. I too lost my mom during my medical school journey, my first year of medical school. So just a slight difference in the timeline. But I very vividly remember a lot of the points that you bring out throughout the book. So what memory stands out most for you? I mean, you're in Georgetown. You're an athlete, the beast. What's going on in college for you? Yeah. So I was totally healthy and was on this path to be a college quarterback. That's all I

really think about was playing college football. And yeah, totally out of nowhere got this call from my dad saying, David, your mama's brain cancer. And I just remember that it just, that moment just changed everything for me. I went from, you know, just not really having anything to worry about in life and wanting to focus on college sports, all of a sudden, you know, just being heartbroken. And were you aware that there was something going on? Like in my scenario, I knew my dad was taking my mom for testing. He's also a physician, much like your father is a physician. And I was where something was happening, but I wasn't sure what. They kind of kept me in the dark.

Was that happening on your side as well? You know, in the couple weeks before I went off to college, my mom told me that she was having headaches and she was sort of just wasn't feeling right. And I kept saying, mom, you're just nervous. You know, your baby boys went off to college. Empty mess in charge. Yeah, like you're going to be stuck with dad. Like, that's what we were certain it was.

And I sort of kept telling her that to try to, you know, make her feel better. And then, of course, you know, found out this horrible news. Yeah. And when they told you the news, how did you feel? What was that moment like? I mean, I was, I was just heartbroken. I remember the first thing I did was get in my car and drive back to North Carolina, which my parents were.

And they did the surgery the next day. It was that quick. Yeah, this is really urgent glioblastoma surgery. And that next day, I remember waiting in the waiting room with my family. And I remember after the surgery, they took us back. And we were so worried, would my mom still be the person that she was before she went in? And I remember we pulled back the curtain and saw my mom there and her head was wrapped with gauze and she had this bulb coming out of her skull following the surgery. And I remember, you know, wiping away tears.

And before we could say anything, my mom pointed to her head and said, Chiquita banana lady. And we just like burst into laughter because my mom was making this joke that we need it. Like we weren't sure if she was going to be the same person that, you know, that woke up that went into surgery. and she came out with this like laughter and just like it was exactly what we needed. We were, like, not crying. We're like hugging. We're like, mom, you know, it's still you. But like for me, I think that's such a great way to just highlight the kind of person my mom was.

She was thinking, okay, how can I have my kids and my husband, you know, break their fear? Yes. In the middle of this really tough time. She was thinking about being a caretaker while needing folks to take care of her. That's exactly. That's exactly right. Yeah.

Were you already interested in becoming a physician or going the medical route at that time? Not really. I was really into sports. And I think I maybe thought maybe there was a path. Sports medicine maybe. But yeah, the moment that I found out my mom was diagnosed with cancer and then started watching her battle with cancer. I just said, this is what I want to focus my life on. I'm going to spend my life becoming a doctor and focusing on trying to help patients like her. And were you following in following her journey, were you watching? as she's going through the different treatments. She's going for multiple surgeries.

Are you aware of the statistics behind glioblastoma? Were you doing research at the time? How much info is being shared with you? Yeah, I took an approach that is a little different than the approach I probably would take now, and that was I didn't ask the doctors, what's the average survival? I said, what's the longest?

Anyone has never lived with the glioblastoma? And I heard there was someone who lived five years with the aggressive form that she had. I remember telling my sisters, guys, mom was going to live five years in one day. Like if anyone can do it, it's her. And that was sort of the mentality we took to this. Of course, given the challenges that I faced both in my mom's battle, but also

my own, I take a different sort of approach. But that was the idea is, okay, she's going to live the longest ever. I could see why the optimistic viewpoint was attractive at that moment. You said that it would be different now. How would it be different now? Now, I think that, you know, of course, given the challenges that my mom through, she hadn't passing away 15 months after her diagnosis. So watching that and watching my doctors do everything for her and watching her fight with everything she had. And then, of course,

then going into medical school and seeing what so many patients go through and suffer in the pain they deal with. And then in my own health, I've just learned that health and illness in so many ways feel so inevitable. And it's something that we're all facing. And before I went in medical school, I sort of thought of, you know, getting sick was something that, you know, had to be unlucky. It's, you know, bad luck to get sick. But I sort of think about life homeless the other way now. It's like, we should be really thankful when we have health because we don't know what's going to come tomorrow. And it's less about being unlucky when you get ill and more that we should be really thankful and feel lucky that we do have our health. Yeah. There's a great quote of a writer

that we're working with to try and create a new age medical drama that is accurate, similar to vibes from the pit, the medical TV show on HBO. He says that at any given moment, most people are not sick, but all those people will be sick and will have some sort of moment where they interact with our broken health care system. And it's going to shock everyone. Because when you're healthy, you don't realize what's happening. You don't realize the struggles that people are going through. What was it like being a college age student with your family, with your father who's a physician, going through that journey of watching? your mom. Were there issues with insurance, finding specialists? What was that like? Yeah, we were

lucky from an insurance perspective and a specialist perspective. My family was in Raleigh at the time, which was really near to this great brain tumor center at Duke. So we were lucky with access and finding the right doctors. But I was really so surprised by just how limited options there were. This is back in 2003, 2004. So few options for glioblastoma. You know, they tried one drug. And then when that didn't work. There really was nothing left. What's sort of really sad is here there really hasn't been that much progress in the last 20 years before glioblastoma. But I just sort of had this very naive, optimistic view of how I thought things were in health, where you're in healthcare where you've got a problem, there must be a solution for you. And, and that we, you know, we've made

so much progress in medicine. We should be so proud. But I didn't realize just how much further we need to go for so many of these diseases. How did your family react during that time? to bring you closer together with their arguments? It brought us so much closer together. I mean, we were close before, but going through that, and my mom was just amazing. She was the most incredible person, and to watch someone like her go through what she was going through,

it just made us all want to be there for her, be there for one another. And, yeah, it really brought us together in ways that never could have imagined, and that bond has stayed that way since then. Yeah. It seems like the through line through her illness was the word hope.

That's right. And it instilled that hope in you. You even found a quote in her bag using the word. Why is that word so important to? I think the word hope is so important because it can have a lot of different meanings. And, you know, there were times in my life where I was maybe too hopeful, like, you know, saying, okay, she's going to live for five years in one day. And then there have been times in my life where maybe I've needed more hope.

But what I've learned from all of these experiences is, you know, is that hope on its own is not enough. But when you can use hope to inspire action, then action can inspire more hope because you can make progress towards the thing you're hoping for. I think that's where hope is really powerful when it's not just something that you wish for and hope for, but really it's something that drives you to take action.

Yeah, because I think about this quite often when I speak with my patients in explaining that they perhaps are lacking motivation in a given moment. And I say, well, look, action should precede motivation. Once you put on your shoes and you go for the workout and you feel the benefits of it, perhaps the motivation will come then. But perhaps this is kind of a hack for that where if you're lacking motivation and action, perhaps you can use hope to stimulate the motivation to begin the action.

Is that something that you've done? I think that's exactly right. I think that it's this circuit where it's, you know, being hopeful can lead you to take action. That action can lead you to believe that you're getting closer to that thing you're hoping for, which can then lead to more, being more hopeful and taking more action and then more progress. And I think that sort of circuit for me has been a total game changer and life changer. I mean, I think I'm alive because of that circle between hope, action, progress. And it wasn't that you were just going through this with your family.

You actually expanded and said, I want to help individuals that are grieving throughout their schooling process. What drove you to start that? Yeah, just a couple weeks before my mom passed away during the last conversation we ever had, she first explained to me that she was really concerned about how I would be, how my sisters would be after she was gone. And I told her, mom, I'm going to be okay. And I'm going to start a support network for other grieving college students in your memory. And I'm going to call it AMF. And I had never thought about it before at all, Mike. Like it literally. It came up on this spot. And my mom's

initials, her name was Anne-Marie Fagan mom. So her initials were AMF. I'm going to call it AMF. I don't know what's going to stand for. I'll have to figure that out. And I'm also going to dedicate my to trying to treat patients in your memory, I'm going to become a doctor. And I thought about that over the previous two years. How did she feel about that? How did she react? She responded with two words that because of her brain tumor, finding words was really hard at that stage. And speech was really difficult. But she responded with these two words that she sort of kept coming back to over and over again during her battle. That was unconditional love. And that was just like all I needed to hear like this, for me, it was such a heartbreaking time in my life to watch her

pass. But hearing those words from her and also seeing her smile, she gave me a really big half smile, you know, because of the tumor, she couldn't smile on the other side. But she gave me the biggest half smile ever. And she said those words. And that was like, okay, this is my mission. I'm going to go do this. And what was the journey like in doing it? Sure. So it started this organization, AMF, it stands for, well, early on, it was for ailing mothers and fathers. Now it's actively moving forward. A support network for grieving college students. We've helped thousands of college students all over the United States, dozens of campuses. So early on, I started this at Georgetown.

We supported a bunch of students there. And then students from other campuses wanted to start campuses or chapters as well. And so we started a nonprofit organization called National Students of AMF. And like I mentioned, helped students all over the country. That was then, that organization then was merged with another grief organization almost 10 years ago. But it continues to have an impact on patients' law. individual students' lives. And then in parallel to starting and growing AMF is when I really got focused on my

medical or pre-med courses and decided that the medicine is what I wanted to do. And for me, sort of back to this idea of hope and action, I was starting to dream of being a doctor and being a part of discovering treatments for patients. And that led me to study harder and feel like, okay, the more I studied, the more likely I could be a doctor one day. And I'm just so happy that maybe I could help a patient like my mom. You strike me as a person from these stories as someone who deals with hardship by putting in more effort, by putting in more action. Has that been a coping mechanism for you? Absolutely. I think that

there's, there's a lot of this. It's called like instrumental grieving, I think is the right term, where you sort of like channel your grief towards a thing. And that thing, you know, helps make you feel better, right? You know, like I was, you know, dealing with so much pain from my mom's loss. But I knew that if I could start an AMF chapter on dozens or even hundreds of college campuses, that could continue my mom's life and legacy. People are talking about AMF being there for them, AMF being the shoulder to lean on and the hand to hold. It's like, yeah, that's exactly who AMF was.

My mom, she was that sort of resource now. She's continuing her life. And so that's exactly right. And then, of course, as I've gone on in medicine and dealt with my own health challenges, that same sort of concept of, can we take a really bad experience? And actually, this is something my mom taught me. And that's that oftentimes we're encouraged to look for silver linings in the midst of tough times. But my mom would say, David, you shouldn't just look for a silver lining.

You should look to create a silver lining. So looking for a silver lining is like, okay, like we've gone through this tough time. And look how great it is that me and my sisters are tighter than we ever were before. Like, that's a nice silver lining to find. But looking to create a silver lining is let's create an organization called AMF that didn't exist before that that can help college students. my god if a lot of bad things continue happening to you i feel like we're going to get a lot of positivity in this world um we just got to be careful because that's a fine line we have to balance um in taking that phrase actively moving forward what does it mean what what should those who

are perhaps in their deepest stages of grief feel and hearing those words yeah actively moving forward is all around this concept of it's not moving on. It's actively moving forward with your life. It's continuing to, you know, cherish the love that you have for that loved one who's gone. And it's also continuing to take action to move forward. So I think that it gets back to that hope and action concept where, you know, we've got to be hopeful for a future where we're living the life we want to live. But we also have to take actions today to get that. to get to that life we want. What's the quote that you found in the pocketbook? Sure. So my mom had

in her in her purse and actually found this after she passed away. My dad and I were cleaning it out a few weeks after her passing and we found this actually it's in my one. No way. I take it everywhere with me. It's been 21 years but it still goes everywhere with me. Yes. So here it is. It's on a piece of cardboard, as you can tell, and maybe a cardboard box, and it's got some tape on it to laminate it. It says, Pope John Paul said it best in his address of the youths gathered to the mass in Camagway. Dear young people, whether you were 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 and freedom, constant responsibility, generous in love,

invincible and hope. and for me this was just so powerful to find because like she kept this in her purse and I love this like I feel like just sort of is totally her like it's a cardboard box that she put some scotch tape on to preserve it but the point being it's all about living a good life you know having a big heart being rich in the high sentiment it's bold in the truth courageous and freedom generous and love invincible and hope it sort of to me felt like this is like what my mom would say, Dave, this is what I want you to do. You know, after I'm gone, like, I want you, I want you to, I want you to, I want you to live

these things. I want you to do these things for other people. And so, yeah, I just, I just love, love this, and I take it everywhere with me. Yeah, thank you for sharing. Thank you for asking. It's so powerful. Is that how she lived her life? Like, in this positive, I'm going to help everyone out.

Is that where you got it from? She did. I don't know if I got it from her, but I, but it's definitely the life that she lived. It was, it was all about being there for others that were going through tough times. and just this, um, not just a responsibility to help others, but really, um, embracing it with enthusiasm. Like, like, like we have, you know, we are fortunate that we have our health or we have whatever it may be that we have. We have to take care of those people who don't have their health or don't have those things that they need. And, um, but not just to do it sort of like, oh,

it's something we have to do. It's something that she wanted to do. She embraced it. She loved it. Um, and, uh, and I, I definitely have, I've taken that on. I, I, I, I feel, such tremendous honor. And I know you feel the same way in being able to take care of your patients. It is so much easier to be a healthy doctor than it is to be a sick patient. And it is such a privilege for us to have even the opportunity to take care of patients. And I feel so honored that I get to do the work I do. Were there any stories or memories that come to mind in thinking back highlighting these attributes of her? Yeah. I think that one that comes in mind was from the person who worked at the pharmacy counter at our local pharmacy.

When I went to pick up the prescriptions for my mom after her diagnosis, so there was, as you know, probably 20 different drugs that were prescribed both chemotherapies but also to deal with symptoms post-surgery. And I remember going to pick up the prescriptions and the person working at the cash register said, you know, why are you picking these up for Anne-Marie? And I said, well, Anne-Rae's my mom and she has brain cancer. And I remember the person working the cash register just bursting into tears and I said, you know, you know, why are you tears? And she said, well, your mom was always there for me. Over the years, during challenges I've gone through with my husband, with my kids, your mom's just been the person that's been there for me. And this was a single person who I didn't know that they had any connection to my mom at all. Just like sort of like these are the kinds of touch points throughout life that you run into. And still it's now been over 20 years since they're passing. I still run into people in life, but also get messages on social media about that interaction they

had with my mom 25 years ago and the impression that she left. She was just, she was incredible. It's incredible how those stories stick around in our minds to keep people alive in our memories. Even that memory that you have of cleaning out her pocketbook, for me, it was going through my mom's clothes and picking out what she would wear. You learn so much about a person to see these little tidbits of notes and things that they choose to keep versus not keep. I even remember from my grandparents finding random poems that my World War II veteran grandfather kept about my grandmother. And I'm just like, he struck me as a person who was a rock. He never showed any emotion. Well, yeah, because he was showing it on paper. But it shows the richness that people have behind their

lives. And I think it's special to be able to have insight into someone's life to that level. I totally agree. What are some of the lessons that you learned from your mom and from the time you had with her? Yeah. Well, a big moment that really impacted the way that I am as a physician is how to treat patients and their families when they're going through these difficult moments.

Sometimes, especially when we're spending 80 to 100 hour weeks in the hospital, especially during residency training, it's easy to get caught up in the mix and just say, oh, another person in the ICU passed. Oh, that person's on palliative care or hospice. care but really understanding that there's a human behind that and not just one human but likely multiple humans that are being impacted by every decision you make every communication you have and you have to be thoughtful of it and it's something that i even shared with my fellow residents

when we were and nursing staff when we were taking care of patients where i remember when my mom passed away like literally the day it happened it was in memorial sloan kettering hospital where some nurses were laughing after my mom passed. Again, nothing to do with my mom. They're not evil people. They also need a break completely irrespective of this. Plus, it was hours after. But just hearing the laughs got us irritated

because we're waiting for a death certificate or this paperwork. It's a brutal time. And I realize they're humans too. But what can I take away from this to bring much in your words, hope and action? What can I bring to my medical education? So when I had,

fellow residents be laughing, I would say, let's laugh and have a good time, just a way. So do away, exactly. And that thought process always helped me be maybe a little bit more empathetic than I would have been had I not experienced that level of emotion during that time. And I think that's what kind of decides who you are as a physician, your life experiences. And this is a very funny and awkward metaphor to make because it doesn't seem applicable here. Right now, the number one job that kids want to have is to become a YouTube. I can't believe we're at this time in society, but that's the new reality. They want to be

YouTubers or influencers, what have you. And the advice that I give them, because they oftentimes ask me how to become a big YouTuber, is do something meaningful in life that you could bring to YouTube. Yes. Knowledge, experience, art, culture, something that you're bringing. Because if you're just going to become popular to become popular, it'll be unfulfilling. And even if you reach all the milestones of the viewership, the financial success, it won't be as fulfilling as you'd hope. Plus, it'll be valuable for society as a whole. In being a doctor, med students often come to me or pre-meds and they say, how do I become a doctor? How do I get accepted into these competitive residencies? I give them some wacky answer,

like go to Egypt and see the mummies. And they look at me and they go, what is mummies? Is it studying the body? Is it anatomy? What advice are you giving me? And the answer is, it'll just make you a more well-rounded human, that will ultimately make you connect better with other humans. And I saw that initially when I was giving that advice, I was thinking more of how to get into a competitive residency. Oh, maybe one of the preceptors will like that you love jazz and they love jazz and you can connect on that level. And that was practically useful.

But even a higher level, being able to communicate with patients on an empathetic level just from your own experience, you know, losing a loved one. raises your level of empathy. Absolutely. Playing sports to the level that you were playing and now me being a professional athlete, understanding what it's like when you get injured and how it impacts your mental health

more so than if it was just a traditional back gate. Those experiences really shape who you are as an individual, therefore impacting your ability to practice medicine. Are there any instances where you've seen your own personal experiences shape, perhaps not how you handled your own condition, but your patient's conditions?

Yeah, it's such a great thing. Great, great point. I mean, I think that, so I played football at Georgetown, and, you know, we're not known for our football at Georgetown, but we play in the Patriot League, so we play against Ivy League schools and other Patriot League schools. I think that I'd learned a lot on the football field about dealing with adversity, about connecting with other people. You know, when you play football, your life and your health is literally in the hands of your teammates. You know, if they make a block or don't or do the wrong. assignment or the right assignment that like your health is in is in their hands um and so you can create these incredible bonds with people in part because um you you have to rely on one other so much and it's it's the same way in health care you're relying on every member of your health care team to help that person and if you make a mistake or if you're not there you don't do what you're supposed to do your patient um you know is is their life is at risk and so I think that there's a lot I learned from from playing football that um that helped me to think about how do we how do I work

within a team. I went to medical school with the idea that I was going to treat patients like my mom and that my focus would be clinical medicine, but actually, as you know, I really fell in love with research and with repurposing drugs and finding new uses for those medicines. And so now my team is the number of researchers. And patients are those who are working for, but it's not necessarily the patient right in front of us. It's a patient who might benefit from the drug a few months or years from now. Yeah, so you've got to be thinking about that delayed gratification of sorts of wanting to help.

I remember for me, one of the things that impacted my medical education was hearing all the alarms when it was time for CPR to happen and actually having to be the one to say stop doing chest compressions. When I then was in my third year, perhaps, doing the simulation labs and hearing those sounds again, It brought me back to that moment.

And I could understand how someone can develop like a post-traumatic stress disorder or have a trauma response to a specific stimuli. I never really understood it. Conceptually, I did, but not on a guttural level. Was there any moments from your experience with your mom that then impacted your education down the line in that way? Yeah. I mean, every time I saw a patient with brain cancer or even outside of brain cancer,

or just patients that were on high-dose steroids, for example, and had a facial appearance similar to my mom's. It brought back so many of those emotions. And though I promised I wanted to go into medicine and take care of patients like her, it actually was patients just like her that I had the hardest time taken care of. It was because, to your point,

those emotions and reactions and actually mentioning CPR, the very first chapter of my book is actually all about, as you know, it's all about CPR, and it's about CPR and hope. And it's sort of the question is, is when do you say, stop CPR and there is no guidance on like you this is when you stop because it's different for

everyone and it really the moment you stop CPR is when there's no more hope and of course with every single chest compression you feel like there might be hope and you know like you like you never and you sort of never want to stop right Mike like like that's the toughest thing about CPR and trying to bring someone back is that is that you just feel like if your mentality is the harder you work the more you do the more likely you're going to get the result you want you and I would still be doing CPR. I mean, and like we want to, like for every one of those patients because we want to bring them back, but there actually is a point where there is no hope.

And for people like you and I, that's actually really hard to recognize that there actually is a point where there's no more hope. Yeah. Not just no more hope, but perhaps harm. Yeah. Because within our health care system, it's with as much technology and innovation we do have, it's easy to overdo it. Yes.

And we've seen that statistically, not just by health care spending in the final years of life, but the number of interventions, the polypharmacy, the number of drugs people are on, oftentimes with perhaps too much hope? Yeah. So how do you balance that when you have these discussions or perhaps internally with yourself? It's so difficult. I think it's so personal to that individual patient and what they're going through.

You know, in my journey, I was 26 when I got so ill. And I had a dream for a future life and, you know, maybe family with my girlfriend, and Caitlin at the time and, you know, wanted to take care of patients. And so I was sort of of the mindset. Like, I'm 25 years old. Like, whatever chemotherapy it is that could be helpful, like bring it all. Like, please, like, let's keep trying. And I was actually just chatting with a friend about this recently and how, like, my mentality was like, let's keep trying. We tried loads and loads of chemo and different therapies. And I was so sick throughout this. And I searched for a treatment for myself and really never, never got into a moment where I wasn't

like constantly taking action or thinking about the next step. But I was talking my friend about the fact that I actually remember the last couple months with my mom were some of the most special months that I ever spent with her. And that was after we decided to stop treatment because she couldn't tolerate it any longer. And we realized that this was it. But those couple months were so special. We went through all of our old home videos together. We put them on the DVDs. This was back in the early 2000s and like that time together when we weren't going to doctor's appointments to figure out if there was a new treatment we were going to doctor's appointments to make her more comfortable and to give her more quality time with

us and just chatting with this friend I was just thinking how how difficult it is to sort of like put these two things together like the desire and the need for for quality time with the people you love and to not over medicate with my like just absolutely just desire to Like, let's do everything we possibly can and realizing that, that there is an important, there's an important point that all of us have to find that's sort of the right, right place. During the Volvo Fall Experience event, discover exceptional offers and thoughtful design that leaves plenty of room for autumn adventures. And see for yourself how Volvo's legendary safety brings peace of mind to every crisp morning commute.

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investing beyond the benchmark, because your money can't grow if it doesn't move. Learn more at dynamic. com.ca. Active. Dynamic. different. It's probably the biggest issue I see in society, not just from a health care

standpoint, but our ability to keep two conflicting ideas present in our minds at the same time where, like, you should have hope through everything. Yes. And at the same time, there's a level where you need to stop. And you need to reflect and cut back and focus on other priorities. And having that conversation, I've had this conversation numerous times with patients' families, patients themselves. It's not easy because a lot of times it's happening in emergent settings where you don't have a good relationship with the family. They don't know who you are.

Here's some young doctor coming in and saying, oh, stop saving my family member. So our language that we use, the way that we have these discussions, trying to be as transparent as possible, I think is a good first step to at least beginning that dialogue. because I think historically health care has been quite parent-like in talking to patients and telling them what they need to do as opposed to presenting options and then giving your expert informed opinion. In your own journey, have you seen yourself perhaps fall victim to thinking you should do too much?

I guess where I stand now where it's been 11 years. I've been in remission and doing well, thanks to a lot of really aggressive treatments and discovering a drug that saved my life. I guess I can, in hindsight, say, like, no, I don't think I did too much. I'm glad I tried all those chemotherapies. I'm glad we did all the things that we did because I did get married to that girl, Caitlin. We do have two amazing kids. I am able to dedicate my life to trying to find drugs in memory of my mom.

So I'm glad we did all the things that we did in my case. And to your point, there's this, like, really difficult balance. and I actually went through a similar sort of challenging balance with my uncle. He was diagnosed with metastatic angiosarcoma back in 2016, which is a horrible form of cancer, uniformly fatal within a year and maybe two years of the most. And it actually happened to be that he was diagnosed with angiosarcoma the same week that my brother-in-law, my sister's husband, was diagnosed with ALS.

And so I traveled down in North Carolina to be with my sister. and her husband, and that was when this diagnosis occurred with my uncle. And so I went with my uncle to his doctor's appointment, at the doctor's appointment, the doctor explained there are two chemotherapies that we use for angiosarcoma. We're going to stagger. Then we'll start with one, and it'll stop working, and then we'll do the second one. That'll probably stop working within a few months, and you'll likely pass away in the next three, six months.

And I was very recent out of med school. this is 2016 and said, well, you know, why don't we try to sequence this tumor to see if maybe there's some susceptibilities to existing drugs that maybe could be used for his cancer, but why don't we stain for PDL1, which is a marker of maybe response to PD1 inhibition? And the doctor sort of looked at me, puzzled and was like, you know, medicine cancer sarcoma and nothing works for it. And it's incredibly unlikely that a, that that genetic sequencing of the tumor would actually be meaningful and give you any information that could be helpful. And if his tumor came back positive for PDL1, that drug's expensive.

It's never been used before for angiosarcoma, so we wouldn't even be able to try it. So I'm not going to do either of these tests. And just given my own experience in the fact that I'm literally alive because of a repurposed drug, I ended up finding another doctor to run the tests. And it turned out that the tumor came back really positive for PDL1 expression. There were no genetic mutations. And as a result of that tumor coming back positive, positive for PDL1. We started my uncle as the first patient ever with Andrew Sarcoma

to be treated with a PD1 hipter pemberalizumab. He's now crossed nine years that he's been in remission on this drug. He's actually, he walked his son down the aisle. Last September, he's walking his daughter down the aisle this September on her wedding day. And the reason I bring this up is because there was very much this idea that like, look, it's never been used before. I'm the doctor. I'm the expert in sarcoma at one of the leading institutions in the world. And I've never tried that drug or a drug in that category. So there's no way that drug's going to work for your uncle's condition. But I think that the reality is, is that, well, these drugs haven't been tried yet for my uncle's condition. And so what we can say is that

there's no evidence because it hasn't been studied yet, but we can't say that it won't work. And so I think that there's this really delicate balance, right? In the world of the unknowns, which you're in medical school, we both learned that there's so much more we don't know than we do know and in med school there aren't multiple choice questions where it's like the answer is we don't know the answer like that would be really nice right unless it was just idiopathic maybe that's true it's it's antipathic like but wouldn't have been nice but but in med school they don't ask us about the things that we don't know because we don't know the answer and so I think we can sometimes get a sense as physicians that um that we know more than we do um about disease did you ever make

contact with that physician again I haven't yet I need to I you know my my uncle and I have sort of um joked about how, you know, we're going to, you know, send up the invitation to the wedding and he's going to be, you know, surprise. Like, I can't believe, you know, that Michael's still here because it's been so many. I mean, it's been nine years that he's been doing so well. And what I love about Michael doing so well

beyond the fact that I'm so happy he's doing so well and so happy for my cousins and my aunt is that that discovery that PDL1 was increased in his tumor led to PDL1 being tested in other patients. and it turns out that about 18 to 20% of patients of angiosarcoma can respond really well to this treatment. Why did you pick that target?

Was there some historical research in this first? Really important. Three years earlier in 2013, there was a paper published on only five tumors of angiosarcoma patients and four out of those five tumors were positive for PDL1. But no one had ever tried a PD1 inhibitor.

And now this is early days. This is 2016, you know, 2013 and 2016. But it just goes to show, and this is something that's sort of been, at the top of my mind ever since Michael's life was saved by this PD1 inhibitor. And that's that there was a breadcrumb that was already out there from 2013. It was in the published literature. Actually, I found it by doing something simple on PubMed,

which is, of course, as you know, basically the search engine for medicine, I typed angiosarcoma treatment. That's how I found this paper. Like, it did not require any brilliance whatsoever. But it was out there, and that link was there between PDL1 and angiosarcoma. And there was already a link that PD1 inhibitors could work on tumors with this expression. So it just for me was this eye-opener

that like it wasn't that the world didn't know that a PD-1 inhibitor might be useful. It was just that the world hadn't yet tried a PD-1 inhibitor in patients even though someone in the world had already figured out a potential breadcrumb. I'm putting myself in the shoes of the listener or viewer right now and it seems like if they ever face a medical condition

where a doctor doesn't know, they should take to PubMed, they should start finding pathways, linking medications to those pathways. Why is that not a good idea? It's not a good idea because there fortunately is a lot of research that's being done. The good news is that there is a lot of research being done by a lot of very talented and well-qualified researchers. The other good news is that there's also organizations and efforts utilizing artificial

intelligence like the nonprofit, every cure that I lead, where we're actually instead of humans manually doing this, you know, one pathway, one disease, one drug at a time, actually using AI to look across all drugs, all diseases, all genes, all proteins, looking for all these breadcrumbs so we can score from zero to one how likely every drug is to treat every disease. So all that to say, you know, thinking back to, you know, during my mom's illness, like those three months spending the time with her were so important. We shouldn't spend those three months like on PubMed Googling and drawing maps on the walls, right? Like, we've got to trust our health care system and our health care system and all of us in it

have to make sure that if there is a breadcrumb and if there is something connecting that we that we do the work to really evaluate them. So what should be the takeaway from that story for people? Like what should they do? Should they reach out to rare disease organizations? Great question. So I think I think there's really three main takeaways. Or if you find yourself in that position, what should you do? The first thing is to find the disease organization for your cancer or for your rare condition. These organizations, they're typically started by patients with the disease or loved ones. They care so much about it. They're so well informed. They're so connected. So that's number one. I completely agree.

Number two is if you have cancer, it is really important to do genetic sequencing of your tumor. There can sometimes be genetic susceptibilities to your cancer. Let's say it's lung cancer. There might be a drug that was developed for melanoma or for pancreatic cancer that might be effective for your cancer because of this shared genetic mutation. And so you should, in my opinion, you should sequence all tumors for genetic changes. And then I think the third- Is that not, I don't know because I'm not an oncologist, but is that not in line with what already happens?

And if not, why? At MSK, for sure, or pennant, for sure. But there's a lot of places around the country where it's not already done. And if, you know, why, why isn't it being done everywhere? It's expensive. That's part of it. But I think the other part of it is that it's got a low hit rate. Meaning that, like, let's say five to 10% of the time you do this, you find something.

Well, within medicine, we might say 5, 10% is really low. But if you're one of those patients that could be part of the 5% to 10% and it could save your life, that's really high, right? But it's also 5% to 10% that you'll find a target. Then you also have to find the treatment for that target, which is probably even a lower. Yeah, that's right. So it's typically consider that it's like 5, 10% are actionable, you know, where there's something that, like, is meaningful there. But it's a great point. So it's basically low odds.

And that was sort of a bit of the discussion with and the frustration I had with my uncle's doctor. And that was he also explained that, David, it's a really low likelihood that this sequencing is going to find something that's being meaningful. And I understood that. But he also explained to me there was a 0% likelihood that my uncle was going to survive if we didn't try something. And so I think that that's part of the tension. And so I think the third thing that I'd suggest is to make sure that you go to see the expert. It's so easy and it's so important. And also for us to really trust whoever the first doctor is that we see.

You create a bond. You create a bond. They maybe diagnosed you. Like, it's very easy to do that. And you should develop that bond. But you should also be prepared to go seek another opinion. And I think us doctors, we need to make it more okay for our patients and really invite them.

You know, this is your life. This is your health. Go see someone else. And I want to hear what they have to say. So I think that that would be the third thing I'd suggest. What's your take on the legality surrounding the right-to-try legislation that's been put out? Yeah, so right-to-try is really around these drugs that, as you know, are not yet approved for anything. They're experimental, so they might be helpful in something new.

That's really tough because, as you know, the vast majority of drugs that aren't yet approved that are in development will never get approval because they will either not be safe or they won't be affected for the thing that we thought they would be useful. Or too expensive to develop. Or too expensive, right? So there's, so there's a lot of things that are in development that will never reach humans, or we'll sorry, they're already in humans, it will never reach an approval. The group of opportunities that I'm really excited about are the drugs that are actually already approved for one thing, and we're trying to find another use for them. So that term is often described as drug repurposing or off-label use for the drugs on-label for one thing. You're trying to find a new use for it.

And actually my first exposure to it way before I'd save my life with a repurposed drug was actually towards the end of my mom's life. So I mentioned that during this last few months when she was on hospice care, we were spending such important special time together. She wasn't on chemotherapy. But one thing that they did a month before she passed away when she was really progressing rapidly, her doctor said, well, you know, I think she's got a lot of swelling around her brain. So we could probably give her some dexymethosone to get rid of some of the swelling. and that might help her. Just from a palliative comfort standpoint. Exactly.

And so he did that and it took away swelling and she woke up and she had a month more of quality life with us. And so it wasn't treating the tumor at all. Of course. But it gave us a month that we wouldn't have had. And that was sort of the first time I was like, wait a minute,

dexamethosone is just a steroid. It's not treating the tumor, but it gave us time. I mean, in gubernoblast. I've seen that play out in antibiotics. Right? Where we're not necessarily treating the patient's condition to prolong their life.

But if the antibiotics make someone more comfortable, it should be part of the hospice care, palliative care, et cetera. Exactly. And so that was the rationale for it. And then it gave my mom this extra month of life. And it couldn't have given her more time because the tumor was growing. But that was the first time I was like, wait a minute, dexamethosone and it's helping my mom with her brain tumor.

But of course, this would end up being what ended up saving my life. For individuals, to play devil's advocate. You ask to get the tumor sequenced. It has the correct target that you were looking for against what that doctor was recommending. You try this treatment. It drastically shortens your uncle's life, makes his final few months worse. Do you feel terrible? Terrible.

Absolutely terrible. In that scenario, I would have felt horrible. And I think that the important thing would have been if I had pushed him to do it. do it. I think that's the key thing where it's I would have felt horrible and or but I'm not sure which one it is. I would have really wanted to talk to and we did talk about you know what this means right because PD1 inhibitors can make you feel terrible and and they could have made made those last few months horrible and that was sort of that challenge I was thinking about in my own mind about my mom like those few months were so special with her and yet I had never even

considered spending a few months like that during my own battle or in my uncle's battle. So I think I think you're exactly right there. And those cases do happen, right? And so I think the important thing is that the patient is fully aware that in taking on a drug like this, like Pemberlismo hadn't been used before for angiosarcoma, they're also taking on a major risk too. Yeah. And I think about these days with the amount of misinformation that's floating on the internet, how much false promise already exists from even thinking about throughout the pandemic, people claiming that hydroxychloroquine would save them or ivermectin. And to the average person, they're seeing someone that's somewhat of an expert saying that

this might work. Their loved one is very sick. They're throwing everything against the wall. So I'm thinking of like, if I had to describe verbally, what is the right balance that one should strike in this scenario? I don't have a good single through line there. I don't either. I think that it's evidence first, right?

That's the through line. but of course the challenge is is that it goes both directions. So evidence first means like is there evidence that shows it works and is there a lack of evidence either way that means that we don't know? And it's sort of like, I think us in medicine and outside of medicine being able to follow, you know, where the evidence is clear that it works,

but also be aware when there's just a lack of information. It's not that this drug's not going to work, it's just that we don't know if this drug is going to work. And I guess the benefit of repurposing or doing off-label use is that, you already have a safety profile to some degree of expectations so that it could better inform you and give you at least one layer of informed consent in which to make a decision. Yeah, that's why I'm a much bigger prone of a drug be purposing versus right to try because you're

exactly right. These drugs are already approved for something. We know the safety profile in the context of another condition. So there's at least that one thing that's checked. The other thing that's is that you know that it actually does have a clinical benefit in at least one condition. Like it got approval, you know it works in one condition. So the big unknown is what work in this new condition. And interestingly, between 20 and 30 percent of all prescriptions written every day in the U.S. are off label. So doctors are writing off label all the time.

You do it all the time, right? There's things, steroids are not approved for upper respiratory tract infection. Like for coughs, steroids aren't approved for that. But we write them all the time, right? Because there's a lot of things that are just never approved for that indication. Of course, that's different than Cyrillimus for my Castleman disease or Pemberlismap for my uncle's angiosarcoma. But the drugs are used off-label a lot. And so you actually have information in a lot of cases on that drug being tried by another doctor.

And so can you actually learn from the real world use of those medicines? So that way, if and when it's you in those shoes, you can see, you know, did this work for people like me? I want to play Shark Tank. I want to pitch you a business. We rent you out to go with patients. when they're going to get a bad diagnosis. And you challenge every physician. Doesn't sound very scalable.

Unless cloning technology becomes available, then we can read. So you know what's funny is, so I mentioned this nonprofit every cure that we set up three years ago. Really, it is fully with the intent of making these connections, finding Pembrelismab might be useful for angiosarcoma, grading every drug versus every disease. There's 4,000 approved drugs, and there's 18,000 human diseases.

So if you tried every drug for every disease, you would try 75 million times. So we can use AI to actually score the likelihood of every one of those drugs for every disease. And then we can rank order them, the things at the top that AI thinks are really promising versus things at the bottom that are not promising. We use those things at the top as a starting place for us humans to be like, wow, lydicane for breast cancer, lucavorn for a subtype of kids with a neurovald mental condition. Like, let's look into it further. And so we then do laboratory work. We do clinical trials and we push it forward.

So in many ways, the idea of what we're doing now is we want to find these drugs before you're at your last leg, before you need someone to come with you to your appointment. Let's find these treatments because the connections already exist to move them forward to that when you're diagnosed, we have a treatment for you and you're not, you know, trying to throw a Hail Mary. I obviously said that as a joke, but your family has got to be calling you to go with them to every doctor's visit. Is that happening?

I do go to a lot of doctors for this. Yes. My concern about the idea of using AI in these scenarios is not necessarily with my issue with AI, because I know there are issues, but my bigger issue is AI takes existing knowledge and new knowledge that comes in, research breakthroughs about our fundamental understanding

of how pathophysiology and physiology work. And right now we're seeing, in our administration from HHS, NIH, significant cuts to that research. My concern is that people won't feel that now, and they'll think, oh, well, they're getting rid of dyes and whatever, this is all a win. But what they're not seeing is what will happen

10 years down the line when they go in with a rare condition, and there isn't an option for them because that research wasn't done. Do you have any concerns about that? Yeah, I think you're exactly right. We are way behind when you think about, like, Humans versus disease. There are 18,000 diseases.

We have approved drugs for 4,000 of them. 14,000 diseases are winning the battle against us humans. That we know of. Right? And every year there's new diseases coming up. And it's like, we should be so proud of what we've achieved in medicine. I mean, 4,000 approved drugs for 4,000 diseases is like incredible. Well, then that's great time to ask this question.

Do you think we're the unhealthiest we've ever been? I think that the statistics suggest that we are the unhealthy. the unhealthiest we've ever been. I think that the statistics and, you know, the data around what we've done in drug development also indicate that we have also come up with more treatments than ever before, right? And so it's sort of like sort of counterintuitive.

But we should be proud. 4,000 drugs for 4,000 diseases. That's incredible. But we can't lose sight of the 14,000 we don't have treatments for. And so anything that's going to slow down treatments for those 14,000, and by the way, even the diseases, the 4,000 diseases we do have drugs for, a lot of cases, there's additional work things we've done.

Pankratic cancer has treatments. ALS has treatments. They're not effective in a lot of cases. And so there's a lot of work that's loans to be done. And so pulling back any sort of resources or advancement, I think, is a mistake. What's exciting about the use of AI that we have is that just as you said, AI is really good at looking at data that already exists, looking for patterns within data. And so we build what are called biomedical knowledge graphs, which basically map out everything

the world knows about every drug, every disease, every gene, every protein, all in one, two-dimensional map, then we train machine learning algorithms on known treatments. So we know siltuxmaab treats Castleman's, insulin treats diabetes. We train the algorithm and say, this is the pattern of connections of when a drug really works for a disease. Now go across the rest of the graph, the tens of millions of connections to come up with a score from zero to one for how likely every drug is to treat every disease. And so it really is able to leverage what us humans look for and sort of what makes a good drug for a disease, but then do it at scale in a way that humans can't do it. So I run a lab at Penn, and our lab is really good at reviewing, you know,

a dozen or so drugs for a couple of diseases a year. And we're really proud of that. And we actually are really proud of the fact that in addition to the drug that saved my life, Cyrillimus, we've advanced 14 repurposed treatments, including serilimus. And so we're really proud of that over the last decade. But this kind of scale that you get from being able to do all drugs and all diseases with AI is just something that us humans can't do. And importantly, I think also to your point. We can't just blindly trust that, oh, if it's the top thing on our AI platform, that you're going to give it to people. No, it's a starting place for humans. That's how I think of AI is a scale. A scaling place. Yeah, exactly. An inside baseball question, perhaps, but how do you, in

training the AI with this two-dimensional graph that you describe and you say, oh, insulin is a, is a medication for diabetes, how does it distinguish or perhaps it does it, treatment of the condition versus cure of the condition because technically insulin doesn't cure diabetes. So like how does it do that? Do you get weird results as a result of that? It's a great point. So we don't differentiate and sort of distinguish whether something's more symptomatic or curative. We actually train the algorithm on connections and then we sort of left the machine learning algorithm to figure out what are the patterns that is a good pattern versus bad pattern. We do less sort of pre-programming. But yeah, so that means that sometimes

you get stupid ideas at the end. And then that's what our humans are here for. And so that's why I think it's so much more important. It's like a brainstorming session. It's a brainstorming on a big scale. Exactly, right? With massive implications. Because, you know, we couldn't think,

humans can't think, we can't comply 75, or we can't compare 75 million things. We just can't. But you zeroed in on your condition, which we're going to get to. Yes. So you were focused on ultra one thing. Exactly.

Not every, not every, you know, 18,000 or whatever. Exactly. And I think that the, so I think the reason we need, to do this, and the reason we need to do this sort of zoomed-out approach, is that, you know, we've got these 4,000 drugs for 4,000, or for 4,000 diseases. We got 14,000 diseases with no treatments. And we know that many of these 4,000 drugs could be useful for many of the 14,000 diseases, but we don't have a systematic way, or we didn't have a systematic way,

to actually make these matches before, and really importantly, there hasn't been a financial incentive to find new uses for old medicines. So 80% of all drugs are generic. are generic. Once a drug is generic, there can be many manufacturers. It becomes cheap. And therefore, there's no incentive to find a new use for an old medicine. So 80% of the drugs that are at our CVS that are proven to be effective for at least one disease, we know their safety profile. They could potentially be useful in more ways. There's zero incentive whatsoever to find a new use. And so it's not that insurance companies or drug companies are

hiding these medicines. It's just that they're not incentivized to find new uses for them. This is where that public, private collaboration really comes into effect because in a scenario like that, there is potential to help a lot of people, perhaps less profit motive. That's where the NIH should be taking stabs at things that are not monetarily valuable, but can bring big results and allow pharma to do the things that can bring the money and build upon their research, perhaps initial research foundationally that they did. We have to, like we've been talking around it for so long, but it's obviously, obviously the cure of your book, the cure of your life.

You have your lovely little cartoon on your lapel there. You're in medical school, right? You were studying for finals? I was a third year med student. Third year med student. Studying finals, what happens? So I started feeling more tired than I never felt before. Shocker.

Yeah, I know, right? Exactly. And I was on my OBG and rotation, which I don't know about you, but for me, the OBG OB part, like delivering the first human baby into the world. For me, it was such a pinnacle, right? Like, I don't know, but like, oh my gosh, this is incredible. But within just a few weeks of delivering the first baby in the world was when I started feeling more tired, which you can appreciate. And then I noticed lumps and bumps in my neck. I didn't know what they were. It turns out that they were in large lymph nodes. Notice fluid in my

legs. I was a really healthy person, former college athlete, very strange to see the fluid and then really bad abdominal pain. And the fatigue got worse and worse over the course of a couple weeks. And so I took my OB-GYN exam. Like I took it in the hospital. And then I basically stumbled down the hallway to the ER. And I was like, I've been sick for two weeks. They ran some blood work. Were you thinking like, oh, I have mono or something?

Yeah, I thought maybe it was mono. CMV or something. Yeah, like, I just, I kept thinking it was going to start getting better. Because every time in my life, like, you got sick with something. And that's what you're taught. Yeah, it's going to get better. Yeah. Although there is the med student syndrome where you think you have every condition.

Well, that's the thing. Were you doing that? I was telling my classmates that I was, that I was like, I actually said my two my roommates who were two of my best friends. I said, guys, I think I'm dying. And they were like, what do you mean? They're David, like, you're just like, dramatic. But I'm like, I'm like not a dramatic person at all, but they're like, maybe just like, you've read too many, you know, med school textbooks. Like, I was like, no, I think, I don't know what this is, but I think it's going to kill me. And, um, and so then, yeah, when I went to the

ER and they ran blood work, I'll never forget my ER doctor. And you'll appreciate this. Um, usually it takes a while for the doctor to come back in the room with blood work. And my doctor came back really quickly. And I remember him looking at me and saying, David, your liver, your kidneys and your bone marrow are shutting down. We have to hospitalize you right away. Back to the interview in just a second. But first, I want to tell you about cozy earth, a betting and loungeware brand made with viscos.

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Toronto International Film Festival, the Hulu original film Swiped, is now streaming only on Disney Plus. When I found out my friend got a great deal on a wool coat from Winners, I started wondering, is every fabulous item I see from Winners? Like that woman over there with the designer jeans. Are those winners? Ooh, are those beautiful gold earrings? Did she pay full price? Or that leather tote? Or that cashmere sweater? Or those knee-high boots? That dress, that jacket, those shoes. Is anyone paying full price for anything? Stop wondering. Start winning. Winners, find fabulous for less. What? I just took an exam. Like, I took a med school exam before I walked in. What do you mean my liver, my kidneys, my bone marrow are shutting down? They did full body scans and found

in large lymphiness throughout my body. I was admitted. to the intensive care unit, where I was getting daily transfusions. I was on dialysis. Gained about 100 pounds of fluid because my liver and my kidney stopped working. Had a retinal hemorrhage that made me temporarily blind in my left eye. Oh, my God. This was all, third year of med school. Third year of med school, within just a few weeks.

No diagnosis. I'm just in the ICU. And what's your mindset there, man. That's, I can't imagine. Just terrified. I mean, of course, at the time, I'm thinking about my mom and what she'd gone through just a few years before. I'm thinking about how I, you know, have so many things in my life I want to accomplish.

I knew I was getting so sick. I was seeing numbers that I had only seen in people who had died. I mean, like, I wasn't very with it, but when I was trying to be with it, I noticed that... Like what your creatinine was elevated, your L-T's were off the... Yeah, so like a BUN over 200, a platelet counts of 8,000, like, needing daily transfusions of red blood cells because my hemoglobin was stuck between six and seven, like bad stuff. that wasn't responsive to even transfusions. And of course, dialysis would improve my BUN and creatine a bit.

But, like, I was really, really, really sick. And how are the doctors treating you, given the fact that you were a med student? Yeah, you know, a little different. I think that, I think they wanted an answer so badly. And it's interesting. I think they were so focused on trying to, like, find a solution for me that I just, and they couldn't. And it was just like, I think so hard psychologically for all of us because I was just getting

more and more and more sick and fewer and fewer answers. And they sort of give me high-dose steroids, you know, the cure for everything, as you know, if you don't know what else to do, try steroids. And they did that for me. And over course, about seven weeks, I started to improve to where I could leave the hospital. And I remember asking my doctor, like, you know, what do you think this was? And he was like, I don't know what it was. Well, let's hope it doesn't come back.

Because whatever it was was really bad. I mean, I'd said goodbye to my family about four weeks into it because my doctors said he's not going to make it through this. And so like, what does your family say? They're heartbroken. I mean, we like, you know, bawled our eyes out. I had my best friends in the world come to Philadelphia and like march in my room one at a time, hug me goodbye. I mean, just absolutely horrible and heartbreaking. And then seven weeks later, I'm just sort of like better.

And I'm like, what the heck was that? But then, and I recovered at home for about four weeks, but then it came back again. And so then I had all of the symptoms come back again, still no diagnosis. And second time around, and just to sort of get to this sort of doctor-patient thing, you know, I'd really trusted in my doctors to sort of find the solution the first time around. Those seven weeks or so. Second time around, I was like, okay, well, we didn't figure out last time. Like, I'm going to sort of try to push a little bit or pull a little bit.

I don't know what's going on. Anyway, my doctors were so tired of me with the second one. Like, why are you asking for tests and just like, like, let us figure it out? But they did eventually do a lymph node biopsy. And that lymph node biopsy is where the diagnosis came back of idiopathic, multi-centered Castleman disease. So the biopsy was done because they thought maybe it was lymphoma, but it came back this very rare disease where you basically have this cytokine storm.

Your immune system goes insane for an unknown cause, idiopathic, use that term earlier. We don't know the cause. You don't ever want a disease it's idiopathic. But with that diagnosis, and again, I was getting really sick really quickly, this time so sick so quickly that when my doctors told my family, I don't think David's going to make it. This is now I was in North Carolina at the time.

A priest came in my room and read me my last rites. So November of 2010, said goodbye to my family again. Now I'm here my last rights. Right around that time I'd gotten the diagnosis and my doctors gave me one chemotherapy, a drug called protoximab. I'm sort of a mild chemo. And then we waited.

And I was out of it. And I remember being really tired and terrified. And I remember thinking about my girlfriend, Caitlin. I just wanted to have a family with her one day. I remember even picture what that would be like and thinking about being able to help patients and remember my mom. And I remember just not really being at peace

when I was sort of just being like, I didn't get to do those things that I wanted to do. And really being heartbroken. And then I remember just sort of going to sleep and thinking that that was it. but fortunately a couple days later that retoxymab did enough to keep me around. It really sort of

just squeakly by. How are you balancing that? Because like, okay, I'm going to make this very non-comparable, but as close as I can. When I have a musculoskeletal injury, and every day you wake up and you're like, you're hoping it's better and you stand up on it, you're kind of guarding it, you're unsure if you're just feeling the pain that you felt

the day before and you're testing it. But in a scenario where a priest is reading you your last right, How do you wake up in the morning and go, oh, I feel good? Like, I mean, it was, it was. Were you trusting what you were feeling? I just couldn't believe that I was waking up. It wasn't like, how do I feel?

It was that like, wait a minute, I'm here. And you would think that that would be like, I actually don't know what you would think it would be like, but I can tell you there's only one emotion when that happens and it is pure joy. Like, like, maybe you should be like, oh my gosh, I can't believe what I've been through or I can't believe the pain. No, at least for me, when you weren't supposed to wake up and when you weren't supposed to wake up and when your doctors are surprised that you're waking up, you're just so grateful and like, I can't even tell you like what it's like. I remember I got out of the hospital.

I remember my dad and my sisters were over my dad's house to have dinner. And I remember I was going to set the table. And I remember like folding these napkins like perfectly. And it's like there's just this joy and just existing. I'm going to be the best napkin folder ever. Yeah, you're like, look at this oxygen that I guess. This is like life. These are napkins.

And like you just, you just have joy and gratitude that's like hard to explain. How do we use that in everyday life without becoming so distracted from what we're doing? Without having to go through being in the ICU. Yes. But also, if we do that, it's hard to focus on helping others and finding cures and working with AI. Yeah.

So how do I enjoy the texture of this chair? and the value of this conversation and the air without getting distracted from where this conversation should go so it could benefit others. Yeah, it's a great question. How do we balance that? I think, because you're doing this on a level that I've never seen anyone do.

No, I don't know about that. But I do, I think that for me, the way I've done it is that I think about that feeling and like remember what it was like, and then all I can think about is there another drug that's sitting at the pharmacy they can do that for someone else. Is there a drug that can help them

to become the best napkin folder of all time to like embrace the feeling of the chair? Like and so for me it's like once I've gone through this and as you know I've gone through this a number of times now five times I've almost died from this disease. It's now been over 11 years. I've been in remission. But like with each one of those it's reminded me like this is

this is what we should be fighting for. And the other thing too is that of course it was with a drug that was already out there. And so it wasn't like we had to do decades of work and billions of dollars. It was like, it was always there. By episode four of nearly dying, were you like, I bullshit, I'm not dying? No, that's it. You would think.

I got some, what, where, you would think, it was actually the opposite. And I'm having the most difficult. Yeah, it was actually the opposite. So, because with everyone, it was like, well, you got really lucky last time, but like, it's not, you're not going to, it's not going to keep. And is that because they didn't know, but. They knew what condition it was. They just didn't know if the treatments would help. That's exactly right.

So they knew the condition. They didn't know if the treatments would help. The first time just using retoxymab alone, in hindsight, they should have used a number of chemotherapies. So I somehow squeaked by with this like one chemo that just sort of like depleted one of my immune cell types. The next time, so number three, when I was hospitalized just a few weeks later in Little Rock, Arkansas,

that was over two months that I was in the hospital. And that one, they gave me seven different chemotherapies all at once, like the seven most intense chemotherapies, adromycin cytokin, cytokin, atoposide, the lchatectin. So they threw the retuxment as well. But so those seven chemotherapies all at once completely destroyed my immune system, but just to tell you how sick I was, I actually felt better with every single dose of chemotherapy. I was so, so sick because we sort of waited at the last leg to start it. I'd been on an experimental drug called celltuxmat before that. But that chemotherapy started to make me feel better. And

I sort of again like had this joy of like oh my gosh like I like I said goodbye like this and yes we found it and I was on this experimental drug and I thought maybe you could keep me in remission I came home to North Carolina saw Caitlin we like you know somehow like my head's bald and I got this like big belly and fluid everywhere and somehow she like still wants to be with me and I was like are you sure and she was like offended that I asked and I was like I'm never going to ask again like if you're if you're okay to be with me like this then I'll never ask again. And yeah, I was able to go back to medical school and really was hopeful that that

experimental drug I was on was going to keep me in remission. But then I relapsed a year later. And number four was probably the hardest one for me emotionally, just in many ways. And that was that, okay, at that stage I had gotten on this experimental drug that was helping other patients we were hearing about all over the world that were benefiting from it. and I had a conversation with my doctor. I said, okay, well, what else can we try? Like, this thing targets interleukin 6.

Like, is there another drug target another interleukin? Like, is there a cell type? And he just explained to me, David, this is all we know about the disease. There are no other drugs in development. I was like, well, is there a lead? Like, is there something somewhere? And he just said, no, this is it. And I said, well, what are we going to do?

And he's like, well, we're going to try those same seven chemotherapies again. After this round, you'll be approaching your lifetime maximum of one of those chemotherapy is what's called atromycin and at some point the chemo is going to stop working and my dad and my sisters and Caitlin were around me and I remember just we were all just bawling our eyes out like you know this doctor's telling me you know that this is it and that there are no more options and and I remember in that moment thinking about a couple things I remember thinking about just laser focus thinking about like that promise I made to my mom like I have got to be able to get to a place where I can help patients in her memory,

and just thinking about Caitlin, who was sitting next to me, and I just wanted a family so badly with her. The other thing I thought about was that those seven chemotherapies they gave to me, they weren't made for Castleman's. They were all made for lymphomas and multiple myeloma. And so I thought to myself, okay,

I know that there are no drugs that we know of that could work, but we also just use seven chemotherapies that weren't made for my disease. Maybe there's another drug made for another disease that could also be used. Maybe there's an eighth drug out there. they could work for me. And so that became my central obsession.

It was okay. And I told my family, I said, I'm going to dedicate the rest of my life, however long this is going to be, to trying to find treatments that can save my life. And I knew it couldn't be a new drug. I didn't have a billion dollars in 15 years. It would have to be finding a new use for an old drug.

And what led you down to specifically looking at the mTOR pathway as the target? Yeah. So after that fourth episode, this is back in May of 2012, I started collecting blood samples on myself and storing them away in the freezer over the course of the next year. Not my home freezer.

A freezer at the lab, yes. But yes, it wasn't the home freezer, but I was storing them every few weeks. And I started doing research. I started an organization called the Castlem Disease Collaborative Network to Advanced Science for Castleman's. I finished med school, and I actually enrolled in business school right after med school.

And the reason being is that... Why business school? Yeah, so I sort of, as I was sort of trying to figure out what to do with Castleman's, I realized that the greatest, barriers for progress in Castleman's didn't appear to be science or medicine. They seem to be are we yeah are we using resources efficiently are we you know collaborating do we come up with a strategy for research it felt like everyone was acting so um independently and in silos. I'm maybe

I'll so I enrolled in business school and um I got engaged to Caitlin and she said yes somehow and um and then I relapsed um and I had my fifth deadly flare um this is now in November of 2013 and with that relapse, I tried a couple drugs. I asked my doctors, can you try IVIG, can you try cyclosporin? I remember one of my doctors saying to me, David, would you like some fries with your order? When I asked for this, you know, these drugs, then I was like, no, I get it. Were you offended by that? Or were you like, I needed a little human. I needed some humor. Like, it made me laugh. So I was trying anything and everything. And it was, I knew it was the last, and they knew what was, this was it.

And they didn't have any other ideas either. So they were supportive of trying these things. And I, and I hoped with everything that they would work. And one of them, IVIG seemed to slow down the progression of the relapse. But then I remember like sitting on the couch with my, with my fiancee at the time, Caitlin. And we were like crying. We're so happy. It was like tears of joy.

Like we did it. Like this disease is getting stopped. Like the lab work was showing was improving. And then it just blew right through it. And I ended up back in ICU with all my organs shutting down, back on dialysis, and, you know, approaching death for the fifth time. And I remember just being so disappointed that I just didn't figure it out. And I was like, I tried so hard. I put in those two orders.

Like I spent so much time with my colleagues, my classmates in med school. We were like brainstorming. Do we try this or that? I tried everything. And I remember being so disappointed. And I remember my doctor's just giving me just the same. crazy combination of seven chemotherapies, the highest doses they'd ever given to a human of this one particular chemotherapy atopacide or that they had. And I remember just being so disappointed

that I was it that I didn't, I tried and I didn't, didn't make it. And I remember saying goodbye to Caitlin and my family. And again, just just complete disappointment that it just didn't happen and that I wasn't going to have that life. And then also remember a couple of days later, just sort of starting to wake up and being like, holy shit. like the cocktail wait a minute like yeah wait okay I have more time okay

and wear my head immediately when I remember my sister Gina was over here on my left and Caitlin was on my right and I remember waking up and just being like gee Caitlin I need you to

I need you to start making some phone calls and they're like what what do you mean and that's like I need you to call UNC and Duke I need you to talk to the records folks here at UMS and you get all those records sent to Philadelphia You should get every blood sample, every lymph node tissue sample sent to Philadelphia. I actually, when I was in North Carolina, I had one of my lymph nodes cut out with the hope that if I survived, I could do research on it.

And so I get that lymph node to Philadelphia, because if I get out of here, like, I've got to get to work. I've got all these samples stored in the freezer there. This is very iron made right now. You're not going to believe. We've got to make a movie out of this. It actually is a movie in the works. Really? Okay.

I was going to say, because it's too good. But Wendy Feinerman, she produced Forrest Gump. She's working on turn the sniff home. So I've got to get these samples and got the samples there about three weeks later. I was back in Philadelphia and it was just nonstop. Can we find something? So to answer your question with a very long answer, I did something called serum proteomics where we measured a thousand proteins in my blood samples leading up to the relapse,

measured a bunch of cytokines, did flow cytometry, so I looked at different immune cell types to see what was activated and eventually got a signal that maybe this particular communication line in your in my immune system called mTOR was turned into overdrive and what was really important was that because i had that lymph node cut out of my neck um i could actually test in the lymph node to see how much mTOR was active in my immune cells and it came back like it was insanely positive and so i had all these normal lymph nodes i had my lymph node it was insanely positive so i went to my doctor in um in dc and i showed him the data and said do you think we could try an mTOR inhibitor mTOR inhibitors have been made a few decades earlier for organ transplant

It had never been used before for Castleman's, but I was out of options. What was the state of research on Castleman's at that time? At that time, we knew a lot about interleukin-6 and the role it played in Castleman disease, but we knew really little to nothing about anything else. We had just started the Castle Leaves-Claver Network a year earlier, so we started to get the community together, but there was no diagnostic criteria, there were no treatment guidelines. There were these chemotherapies that were getting thrown around here and there. So how was the diagnosis made if there was no criteria?

Yes, it was made based on, you needed a pathologist to recognize that the lymph node looked like a lymph node that they had seen when they were basically in residency or med school. Got it. And then the clinician would sort of confirm it. But we came up a treatment or a diagnostic criteria in 2017, treatment guidelines in 2018. So now there's actually criteria for how you diagnose it and how you treat it. So you were finding that there's this mTOR possibility. You reach out to one of your colleagues. What happens then? He says to me, David, it's probably not going to work, but we don't have any other option. so let's give it a try and he prescribed serolimus and at this stage I just received

a bunch of chemotherapy and I was certainly improving from the chemo I started serolimus and I remember within a couple of days starting to notice some symptomatic I felt better I remember the blood tests looked better but remember four times

before I had gotten better and it came back so I like you were waiting for the other shooter exactly I was like I'm not going to celebrate at all like Caitlin like we're like we have one thing in front of us May 24 2014 which was our wedding date like we're going to make it to May 24 2014 and we're like we're like not going to celebrate until May 25 or we're going to celebrate May 24 2014 but but that that was like the singular thing it was like is Cyrillima's going to help me make it to our wedding day and and it did

and I remember my hair grew back just in times it looked like I had like a buzz cut on our wedding day grew back just in time and and then we're we're sort of like oh my gosh like we made it to this date like maybe it'll be another month and then we really started celebrating every month and we would even celebrate fractions of months. It was like, it was like seven point three eight months. And it's like, and like it was like this constant just like celebration. And that's sort of concept of joy that I was talking about earlier and just gratitude for like the fractions of months. And what like every breath meant that we just didn't think that we would have together. And the the years just started adding up. It's now been over 11 years. I've been in remission 15 years now since I first

got sick. And I got two little kids. And I get to spend my life trying to, do everything I can to find more uses for existing medicines. In those first 7.38 months, how did you make the decision to push yourself further each day? Was there ever a discussion? Oh, maybe I shouldn't work out today because I might weaken my immune system or my ability to fight this thing. How did you manage that?

It was really tough. I mean, in the early days, it was like, yeah, I was afraid of everything. Like you said, yeah, exercise, I was concerned. Like exercise, you know, it creates, like, inflammation. and like there was just everything I were like as I worried about everything of course because you didn't know what the target was yeah I didn't know what the target was I didn't know why I kept relapsing you know it kept coming back I was now I was in business school and it just like it was it was terrifying um and at the same time I was like so grateful to have life that I wanted to live life and I wanted to do to do life and and and so it was it was challenging but uh but yeah it was just sort of like one day at a time and and you and you you're like, let's push a little more today, push a little more today. And then were there days where you would wake up and you say, man, I feel like I'm getting back to normal.

I shouldn't be excited because it might all change. Was there always that hesitation? Absolutely. I mean, with every year that went by, there was like this celebration. Like, it's been a year or two years, but there was never like, I mean, I still don't take like a deep breath. I mean, and I still have my port on my chest, which is where I get infusions from every a few months and I still have my scars in my neck and scars in my abdomen that like remind me

of what I have gone through and what I could go through. But pretty soon after the drug started to work for me, I just have had this thought that I haven't been able to get out of my mind. And that was that the drug Cyrillimus that's saving my life was at my CVS all those years when I was into the ICU. For three and a half years, I was battling for my life. And every time I passed by CVS, my drug was in there. And all I can think about is, okay, if my drug was in there, they could save my life, how many more drugs are sitting in the CVS that could save other people's lives for other diseases? And what can we do to make sure that people don't have to be told we've tried everything when there's something there and that we can actually unlock these

opportunities to save lives? And that sort of gets back to this whole thing around like the system that we're in. And like, why is it that a drug that's cheap and safe and old isn't used in a new disease area. Well, a lot of times it's just because the work hasn't been done to find the connection. But in some cases, it's because there's just no incentive to find that connection. There's just no incentive to do the work. And so that's just become all I can think about these last 11 years. When did your physician start realizing that this was a success and we should mainstream this case report, publish? It took a couple years before we were ready to put together a case report on it because, like I said, it was just sort of the fear of like,

is it just going to come right back? Right. And so, So within a year or two, we started treating additional patients with Cyrillimus, always like sort of concerned. Like, I don't know if it's going to work because, like, you know, we don't know how long it's going to work for in my case, but we treated a patient in New Zealand and a patient in Brazil. And then for me, what was really powerful was this young boy in Philadelphia, the Children's Hospital of Philadelphia.

He wasn't responded to any treatments for Castleman disease. And we decided to try Cyrilliamus on him. And again, this was like pretty short after I started on it. We didn't know how well it would work. And Joey had the most incredible response. I mean, like, I remember coming in to look at his blood work the following day, and his mom handed me the blood work. And I remember starting to tear up and starting to cry because I was like,

oh, my gosh, he was getting so sick, so quickly, and things were already stabilizing. And within a few days, it's turning to improve. And Joey's been doing great now for many years. Just got to see him and his family a couple weeks ago. For me, that was a really important moment because the patient of Brazil and the patient New Zealand. I didn't get to see them get better. I heard about them getting better, but like to sit there and see this young boy who was so sick to start getting better right in front of my eyes in the hospital was like, oh my gosh, like we're really on to

something. And it was sort of one step towards where we are now, which is okay, how many more these things are out there. And there were all the same subtype. That's right. The most severe IMC, which is called Tafras syndrome, the most severe subtype. And where did you publish your case reporter. I'm curious. In the journal of clinical investigation, JCI, I've had a great readership and helped to get the word out to a lot of other patients. Right now across the United States or perhaps globally, how many people are you using the medication? It's hard to know the exact number, but certainly in the hundreds are on it right now, maybe low thousands, probably somewhere between mid-hundreds and low thousand. And unfortunately, it doesn't work for everyone,

which is sort of, you know, it worked for the first four patients to be treated myself and then these next three. So we sort of thought, like, maybe we're done with Castleman's region. Maybe we can sort of retire early and like, you know, go be a professional napkin folder. But unfortunately, it turns out that it works in somewhere on 20 to 25 percent of patients. And so, and it turns out it's partly subtype specific. So the really severe subtype, the one that I have, it does have a higher response rate. But if you look across all coverage, it's lower than that. And so finishing, after finishing at business school, I'd then join the faculty at Penn to really focus on finding more treatments for Castleman

than related rare diseases, especially given that Cyrillimus wasn't going to work for everyone. And we found pretty shortly thereafter a drug called ruxillidinib that could work for a group of patients with Castleman's young girl named Kylo was in the ICU in Chicago and sick for almost an entire year.

Nothing was working. Even chemo wasn't working for her. And we ended up using ruxillidinib, the first patient ever with Castleman to be treated with it. And she responded so well. It's actually now starting up her sophomore year of nursing school at Marquette and doing so great now about five years

later. And that was another one where, okay, in Joey's case it was okay, seeing someone benefit from the drug I'm on, this is really powerful. Hearing about another young patient benefiting from a different drug that we just uncovered through also doing proteomics and also doing flow cytometry, that

was another powerful step. And then the next one, of course, was what I share with you about my uncle Michael, Pemberlizumab. Now it's a different disease altogether like maybe there are more things out there and I should also share you know just sort of your important point you made earlier which is that I don't believe there is a drug out there that already exists for every disease I don't I I'm not naive to think that like every disease I mean even in this condition it matters on some type and there's a percentage there's people

there's people who are dying even with calcium disease even after we've worked and put everything we had for the last 10 years even with every drug we try so I don't believe there's a drug for everyone, or for every disease. But what I do believe is that if there is a drug out there, and if we do have the ability to make that connection to the disease, that we must do that, that we have a responsibility to unlock the potential of the drugs we already have. And so, you know, with each of these unlocks, it's, it's, you know, made me feel more convicted about that. And there's also been a lot of setbacks. I shared with you about my brother-in-law, Chris, who was diagnosed the ALS, and he passed away a few years ago from his ALS. Thank you.

we actually identified a drug that we thought might work and who knows if it ever would have worked, but we ended up not trying it because it's a leukemia drug and we thought that it would make him feel horrible. And we made the decision as a family, which was let's not try this horrible leukemia drug because Chris has three little kids that he wants to spend precious time with. And so there are certainly diseases out there that are really intractable. And at the same time, you know, we've got to keep looking for the opportunities that exist. I'm really glad you shared that story because it shows how balanced you are in your approach. Sometimes you're going all in and you're trying everything.

But in other scenarios where you mutually agree through a shared decision-making process that it's not the right approach. And not for any true medical reason. That's right. Simply from the human side of things of thinking about children, thinking about how you want to spend your time. So I think it's going to be different for everyone. And I want to highlight that for the audience because sometimes we get narrowly focused

on miracle promises or simple solutions. It's never easy. There's so much nuance that needs to go into it. And speaking of nuance, throughout the book and your journey, you preach the importance of collaboration, especially with rare conditions. United States recently pulled out of WHO. There's all sorts of demarcation and fractioning

happening across the global health landscape. We're pulling out of Gavi. Are you concerned about the fact that there is this sort of destabilization of global health networks. Absolutely. I think that, you know, collaboration is critical. If this was me working on my own, I wouldn't be alive right now. And for many of these patients we've talked about, there have been so many different groups working together for just about every drug that's ever been discovered. It's like, these take teams. And so, yes, I think that collaboration is essential. I worry about the loosening of connections

between these important institutions. And I'm just really hopeful that thanks to people like you and to organizations out there that are pushing for, for us to continue to collaborate, for us to continue to support our institutions. I'm hopeful that we can do that. But I do worry just like you do. Yeah.

Tell me about Caitlin. She's amazing. I've actually said before, I don't know how she feels about it when I say this, but the only thing more relentless than Castle is Caitlin. You know, Castleman's keeps coming back. And I really don't know how she'll feel about me saying that. But Castleman just keeps coming back. And Caitlin just never leaves my side. And having a Caitlin in my life is just the most, she's just, she's incredible. She's just

with me through everything. And I think back to those two words that I told you my mom kept with her towards end of her life. And she shared with me that the last thing she said to me, unconditional love and um i just think i've found like the embodiment of unconditional love and kately i mean it's got to be pretty unconditional for someone to put up with me and i mean one all of my health challenges and you know bald and the big belly and the fluid and there's all that stuff and the you know is the you know having her you know sit next to me in the ICU all those times the other other pieces is how intensely focused i am on on the work that i do um i work crazy hours and i'm like all I can think about during the day is about can we find this drug for this disease and

could this algorithm help and and I mean I live as I as I shared earlier just with this constant thought of how many more drugs are sitting at the CVS that could treat patients that are in need right now and I've been able to be a part of making those connections and seeing the lives that people can live and so it takes a really special person like Caitlin to to be by my side throughout all this and to be a partner with me on this crazy life that we're we're on. And we've got the two most amazing kids in the world. They are so sweet. My sweet Amelia just turned seven and my son is three, although he would say he's three and three quarters. It's not just three. Important variable. How much thought, if any, did you think about Castleman

having a genetic predisposition? A lot. So most patients with my condition, the very severe subtype of IMPC, called Tafro, don't survive to reproductive age and to have children. And so as a result, we don't have good data on the likelihood that you'll pass on your genes to your children just because people with my subtype don't survive that long. So we have limited data. And you can tell them, we're both data people. So limited data to make a decision like this. We don't know about transmission in terms of parented child genetically.

but what I did know was that we were doing everything in our power to figure out more treatments for Castleman disease and the data that we did have didn't show that there was clear inheritance genetic inheritance so we decided that it was the right thing to do to have or we thought it was the right thing for us to have children but the other factor to include in that too is you know it's one thing to think about you know will those kids have your condition the other is you know will your kids have their father with them for a long period of time. And so we also didn't know. My daughter's seven. It's been, you know, so it was four years into my remission. We didn't know that it would be

an 11 year remission right now. And still don't know how long of remission it's going to be. But Caitlin and I decided together that it was the right thing to do. And gosh, these seven years have just been so special with our sweet Amelia. And I'm so glad we made that decision. what do you think out of the many decisions you had to make was the hardest decision deciding to have kids settling down picking your partner dealing with loss encouraging your uncle to go for the treatment finding that second opinion what was the hardest decision yeah it's a great question um probably the hardest decision was the decision to not try that medicine in my uncle i think that that problem, sorry, sorry, sorry, my brother-in-law, sorry, I was thinking about multiple

things at once. I think that, gosh, but I have to admit, like, I think that what's so interesting is that when I look back on all these different decisions, I don't know, they all were so hard. I mean, it's like, I mean, even like just thinking, I mean, I wasn't really a part of the decision with my mom, but there was obviously a decision at some point to say, like, we're going to transition to hospice care. And, and as we said before, like, I'm so happy we did that. Those two months were amazing. So yeah, and then of course, you know, the decision to try these different medicines in me, I don't know. I should, I should probably, I should probably know what the hardest is. And it should come, I think, I think maybe the answer. I think that

answer is you have so many that it's hard to choose. Yeah. But they all carry different reasons for being hard. Whether things are outside of your control makes it hard, whether it's you're risking someone else's life makes it hard. There's an emotional component to some of them that makes it hard. I think that's right. And I think it's also that like the outcome I think also is almost just dissociated from like how hard a decision it was because sometimes you make a decision that was really hard and it ends up working out great. Other times you make a decision that was the right decision, but it still doesn't work out right. You know, like we were talking about earlier, you know, you could make the decision to try a medicine because there's good data that it could work

and that medicine could have a horrible side effect. And it was so it was maybe the wrong decision. But I just think that, yeah, I think that when you make these decisions, to your point, very much based on the individual person, their circumstances, always with the data in mind, I think that even when they're really hard, they can somehow become the right decision. Hit pause on whatever you're listening to and hit play on your next adventure. This fall get double points on every qualified stay. Life's the trip. Make the most of it at Best Western.

Visit bestwestern.com for complete terms and conditions. What's your relationship like with fear? I think that when you've gone through the challenges I've gone through, and I've been terrified over the years. I mean, each time I almost died, there's been so much fear. And, you know, fear of the unknown before there was a diagnosis and fear of death and that I wouldn't be able to do the things that I wanted to do. And so I think that there's a little bit when you go through fear and you deal with it enough,

that for me, I've sort of boxed fear out of my life. It's like, there's sort of no room for it anymore. It's like maybe you have a certain amount of fear you can have in your life. And I sort of use it all up. I'm out of fear. Wow. Okay. And I think that it, yeah, I don't know.

Because I think there is a bit of this sort of like inverse between. fear and hope because I think hope is really believing that like there's going to be something positive even when like you should be terrified and you should be afraid of what's going to happen but finding something that could be positive and I think that what's happened in my life is I've sort of crowded out fear and I've just become really hopeful but to your point there can be too much hope and there can be a point where you're too hopeful in this fear equation there were moments where you didn't know what was going to happen. There was moments where you were basically pronounced dead or nearly pronounced dead. What was your mental health journey like?

Did you require working with someone from a psychologist standpoint, a therapist, or was this primarily caregiver focus if you're comfortable sharing? Yeah, these are such important questions. I think that there were three things that really helped me to get through these things psychologically. So the first one is that during my toughest times, I always maintained a focus on what I was envisioning, what my future was that I was hoping for. I think that, for me, that was I could picture Caitlin and me and I could picture kids and I could picture me in the lab.

I could picture me helping patients like that, like I could truly visualize that. So even when I was so sick and I was just sort of like fighting for each breath. Even when the priest is telling you, well at that point I have to admit at that point I was I was really just devastated because I could I could like almost picture it but it was sort of like

it was just disappearing it was just disappeared it was like that was like oh gosh that thing but 99% of the time I was in I was in the visualization there were moments yes absolutely where it was just utter disappointment that I this is this that thing that I'm thinking about that's been fueling me it's not going to happen

but for most of the time it was that vision for the future that was really driving me the second piece was how critical it was to have my family by my side. That's why I think about during COVID when people were in the hospital by themselves, what that must have been like to be alone. Because for me,

I literally clung on to my sisters and my girlfriend and my dad's hands. Like I was holding their hands. Like I could feel their strength through just like holding their hand. I could like their voices, their support, their care. I remember there were times when I was in the ICU where I was so sick

and I really could barely even, construct a thought, but like, whatever I said, they nodded to. I remember there were times where I was like, am I making sense? Like, do they, and they, and then later on, they're like, no, you made no sense. But in the time, we were just like, we were sort of just trying to, like, yeah, we're just trying to like, you know, nodding along. And it's like, oh, because I didn't make any sense. And I was like, anyway. So, but they were just always there. They were relentless. Like, they were supporting me relentlessly. And I think that you've got to have that kind of support. And then I think the third thing that helped me was really trying to take things one step at a

And I remember at one point when I was really, really sick, I had fluid all over my body. I mentioned again about 100 pounds of anisargo, fluid everywhere because my liver, my kidneys weren't working. And I remember hearing my sisters say, just breathe, Dave, just breathe. And every breath was really painful, but just like hearing her encouragement was like, yeah, I can do that. I can do one more breath. And so this sort of idea of, you know, having a vision for what you're fighting for, having support by your side, and then really trying to take it down to the smallest possible unit. that helped me so much psychologically.

And then the other thing, too, is that once I would get to the tipping point where now I'm starting to move in the right direction, at least the way my brain worked is I didn't go back to, oh my gosh, I can't believe I went through this. Like, why is this happening to me? This is so horrible. All I can think about was, oh, my gosh, I'm here.

Like, this is amazing. And I don't know if that's transferable to everyone's challenges. I don't think we should all just be, like, happy about everything when you get to the other side of it. And I think we should really, you know, sit with our feelings.

But for me, I just get so much joy when I get to the other side of these things that it's, it's, it's, I pushed, been able to sort of push out some of those tough things. Although I will say when I was writing the book, I spent most of my day crying. And it was because I think so many of these emotions and these feelings really had been pushed back because as you can tell, I get very focused on things and something, get very focused on drug repurposing and the next patient, the next patient, the next patient. And so a lot of these things had been pushed back. And it was very much a therapeutic process. to actually write it out. This sounds like a dick question, but I think it's an important question to ask. Did you ever, or was there a strategy that you used to avoid feeling like a burden to your family? Oh, it's such a good question. I really struggled with this because my dad was out of work for six months while I was first in the hospital. My sister stopped working.

My sister Gina came and spent all that time in the hospital. you know my my brother-in-law chris and her kids were were by themselves Caitlin was trying to make time between work I felt like a complete burden and I think that the only I don't think I did anything to feel less like a burden but I think they did so much to make me feel like I was not a burden to them so it was sort of like they did that for me

and I think I also one thing I learned you know when my mom was so sick I remember I didn't want to cry in front of her I didn't want my sisters to cry in front of her because I was like we got to be strong for her like and I had this sort of idea of what a caregiver is supposed to do for someone who's really sick and I thought like we're going to be strong and we're going to because I didn't want to be a burden on her I didn't I didn't want my tears to make her upset and I had all these ideas in my mind of what it is to be a good caregiver and then of course through AMF I thought I learned even more because I sat in support group meetings basically every week for years and years and years. with people going through horrible losses, which, of course, by the way, as you can imagine, has gotten me even more obsessed with, you know, can we find treatments for patients? But in going through the experience of the patient myself, I realize that a lot of our sort of social norms around how we're supposed to be strong for people and show up as caregivers really kind of went out the window. And what I realize is that my family members just being like their authentic selves. Like if they were crying because they were sad, I was sad too. Like them crying

didn't make me more sad. Like I was already sad. And like, but it actually, it made me feel connected. Connected. Yeah. So it was like that hive mentality. Yes. So what I wanted was like them to be authentic with me. I didn't. So like if that was really sad or really happy and we watched a lot of borat videos when I was in the hospital like like whatever it was. Like we like we found like whatever the emotion was that they had not. We just wanted to like, you know, the hive mentality. to just be in harmony with one another. And so it wasn't so much that like I wanted to not be a burden on them or like I think I just wanted to just to feel like, you know, we were, you know, being there for one

another. And they did such a good job of of never complaining, never saying, gosh, I wish I was doing this or doing that. I'm here stuck with you in the hospital. It was like they sort of, you know, convinced me that it seemed joyful to them, like that they wanted to be. And like, I know that's why she got mad at you when. And you said, are you sure you want to do this?

I mean, Caitlin was, like, so upset. She was, like, offended. And I was like, are you, like, are you talking to the same person that, like, I think, like, I'm, I'm, I'm, I'm, I'm, like, you really shouldn't want to be with me. Like, I'm, like, I have, like, this critical, horrible illness. And I'm like, I'm, like, you're, I was 25 at the time. She was 23, like, go find someone else who's healthy and, like, isn't so hardworking and crazy and, like, I don't know, does fun things and isn't just so intense. Go, go find that person. You deserve it.

And, and she was just totally offended. And she's, she's just been amazing and, and, uh, and we're able to, to make a great team together. Throughout the journey, any things you would have done differently or perhaps regrets? That's a great question. Um, I mean, just thinking back to my mom's illness, I think that, um, and I think this is probably the case for a lot of people that lose a loved one. I think I would have, um, just try to soak in every moment. with a little bit more. I don't know what that means. But like, you know, when you no longer have that person, you just sort of like crave like a little bit more time. You just think like,

you take for granted. You know, it's the napkin folding together. Yeah. You just sort of like, just like, can I get a couple more minutes where I just was like sitting there? I don't even know what it would have been like. I think that's, that's maybe one regret. I think that in my own journey, I think that, gosh, what regrets do I have for my own personal battle? I think that I think making Caitlin more of a priority at times I think is something that I could have done a better job of fortunately I have the ability to do a better job with that moving forward like I'm making up for it now I can I'm making up for it now I'm trying to Caitlin if you're listening um but yeah I think that um she's just been so amazing and um she deserves uh you know the the you know equal co-parent partner and all on all this and so I think that um I'm trying to make up for not always being as present and just, you know, I get phone calls at all times of night about patients with Castleman's and related inflammatory diseases and talking to doctors and patients and a lot of times, even if I'm not on the phone call, I'm thinking about these things.

It's hard to take a vacation when it feels like it's at the expense of someone else. It really does. And especially when you've sort of experienced both sides so vividly, you've experienced the pain of loss so you know what that person and the, their family members going through you've also experienced the power when it when something works and you have a disease like castlemans it's shown itself to be horribly deadly and also incredibly responsive if you get the right drugs so it's sort of like the perfect um combination of something that's both horrible and actionable um that makes it hard to to to not not always be on yeah yeah your relationship with katelyn is so powerful and strong from the experiences that you've

had together. I mean, I don't think people do that in a lifetime and you guys have done it in 15 years. How would you think if I asked her now, she would describe you? She would probably say that I'm relentless, which is the term that I used to describe her. But I think she would say it in a sense of the work that I do. And sort of when I have this mission, it's, I think she probably would use that term. And she's been by my side through three missions because the first mission was AMF. And she actually started a chapter of AMF at her campus at Meredith at Meredith to help grieving college students at Meredith because she was like,

this is amazing what this guy Dave's doing and I want to do it here. And so she was part of that journey. And she was part of growing AMF and doing fundraisers and like partnering with me to raise awareness for college food and grief, which like grief during college is not something people want to talk about. It's not like it's not at all. Like, oh, you lost your parents. Like, that's not something that people want to talk about in college.

You know that because you lost your mom during med school. Like, that's just not a topic that people want to talk about. She was with me through all that. She was with me through the fight against Castleman's. We're still in the fight against Castleman's. But now she's very much with me in this fight through every cure to find new uses for old medicines and to use AI to do it. And so she's been with me and sort of seen me on these missions. So I think she'd say I'm relentless.

And I think that I think she would say I'm a really good dad. I'm very proud of that. I'm very proud of how I was a dad. Yeah. How do you spend your time with your kids? um it's a lot of playing okay um it's a lot of like i just there's no joy that's better for me than like hearing my kids giggle and smile and laugh is that just like the culmination of the journey right it is it just it just feels like like yeah and it's like every like if i can get like

my son or my every time i get them to giggle or laugh like if it's a joke or it's a lot of times it's tickling but like just like anything to get them to laugh just feels um yeah the joy of of these two kids and and yeah i just like i you know i spent so much time they're probably like Dad, why are you, like, staring at me? But I just, like, I just spend time looking at them where I'm just like, oh my gosh, like, I can't believe that I'm here, that we're here together. You know, if I don't find this drug for me, they're not here.

I'm certainly not here. And, yeah, it's just, like, they're like my sort of visual representation that I get to see every day of really the possibilities that are out there and that there's these drugs that can help people. And not just help people to live, but help people to do things they never thought they'd be able to do. Like, I mentioned that young girl who's a nursing student and my uncle who's walking his kids down the aisle.

And, like, that is what this is about. It's not about AI and drug repurposing and fixing the system that's broken. It's like, yeah, that's all part of it. But it's about, you know, being able to do these important things with the people you love. Do you want them to go into medicine? I don't know. I don't know if there is going to be medicine in 20 years. No.

What do you mean? We're just going to cure everything? Well, no, I don't know about that. I think I just don't know anything about what the world's going to be like in 10, 15 years. That's probably the most honest statement I've heard when making a prediction. I mean, I don't know, like life, I think, is going to be so different. I mean, we've seen incredible progress with the AI algorithms that we're using. I mean, when we built this nonprofit three years ago and we had this vision that, like,

we're going to build this AI platform. It's going to match every drug against every disease. We didn't know how effective it would be, of course, when we started. It was just a vision. We ran the algorithm for the first time about two years ago, two and a half years ago. And it took us 100 days to score every drug versus every disease, to scan the world's knowledge. Now it's down to 17 hours to do that. And that's not because of anything we did especially.

That's literally just technology involving, compute improving. And so when you go from taking 100 days to down to 17 hours and you can rapidly iterate and say, like, that's a stupid idea. Why would that drug for that disease, like this is a cream. We're not going to use a cream on a liver cancer. Like, let's keep training these algorithms. They get better and better. And the results are really powerful. We're finding treatments for rare cancers that we had never considered before.

We're going to be announcing a program coming soon about a very rare condition that's only been described in about 12 kids ever right now. But a really simple generic drug that's already helping a few of those kids. And we want to get it to more than we want to find more of those kids. These are the kinds of things that, like, we would have never known to look into that disease or that drug, if not for AI. But AI is helping us to find these sorts of treatments, and it's getting so much better. And like every Wednesday, I got to meet with the medical team. We go through basically the treatments that our algorithm are predicting and that they're reviewing and determining what looks promising. And there's a lot of stuff that makes no sense, and we skip over it.

And there's a lot of stuff that looks really promising. And we get really excited about it. And then we do lab work and we do clinical trials. So all that to say, I get to see every Wednesday, literally the improvements that are happening with our machine learning algorithms. And when you extrapolate that out to all of the work that so many other groups are doing and so many companies are plowing so much, so many resources into, I just don't know what the world looks like in 10 or 15 years. But we're just doing everything we can in our power to make sure that, you know, between now and, you know, the future that none of us can envision that the patients don't suffer if there's a treatment that can help them. Yeah. I don't know if I'm a pessimist for saying this, but to me, I'm waiting for the rate-limiting step of AI. And I don't think we know what it is yet. I think it remains to be seen, and it could

show up next week or it can show up in five years, but I feel that there's something coming that we don't yet fully understand, because whenever you have progress happening so quickly, it's hard to, something that we're taught in health care is to reassess. When there's so much evolution happening so quickly, it's difficult to reassess if you're moving in the right direction when it's happening as quickly as it is. And I've had this conversation play out with Jonathan Haidt. I don't know if you're familiar with this work, wrote The Anxious Generation. Oh, yes.

Bestseller, I think, like 73 weeks in a row on New York Times. And he talks about how we villainized the printing press. We villainized radio and television. He said, but those took years to develop and see the harms and learn. Social media happens so quickly. Now AI is happening even quicker. And I feel like because of the evolution happening as quickly as it is, there's going to be some rate-limbing step that we're going to hit that is going to be unexpected.

I don't know what it is, and I'm certainly not smart enough to predict it. But I don't know if that makes me a pessimist. I don't know what you think about that. No, I think you're right. And I think that some would have predicted that maybe it would be government regulation that would slow things down. I think that given sort of the fact that AI is being advanced by so many countries all over the world and oftentimes with implications far beyond health care and defense and things like that,

that it seems like no one wants to control it from a governmental perspective. And so if it's not going to be regulations that are going to slow it down, you're right. Is it going to be energy that's going to slow down? Who knows what it's going to be? But I just know that in health care, I think there's a lot of really positive uses for it. And I think that this use of new uses for old medicines where you already have data, you already have the breadcrumbs.

So I think that's what's tough regenerative AI, and really 99% of all AI in biopharmaceutical work is around new compound development, because that's where all the IP is. That's where all the money is. If you find a new drug, you can potentially make billions of dollars off that drug. And so that's where AI is being really focused. But being able to, and in those cases, these are new drugs where you don't know how it works. You think you can predict what it binds, so you think, you can predict what you think it might do. But what I think is so much more powerful use is to say, let's not predict how the drug might work or what might happen.

Let's actually use real data on how the drug does work. What will happen when it's in humans because we already have data on humans and just apply that to a new disease. And when you do that, you're using breadcrumbs that AI is really good at using breadcrumbs that already exist to look for patterns as opposed to generative AI where it's really sort of coming up with ideas from scratch. So I think it's a great use case. I mean, I think we both know the reason that hasn't been focused on is, because these old drugs are cheap and old. So it makes sense, but I think it's good use. I think that AI in general, when people talk about it in healthcare,

they always talk about the future of ET coming in and doing some magical thing, like creating a new drug. But to me, my biggest value of it is like, allow me more time with my patient. Yes. Help my patients select which insurance plan is right for them. Because when they see a list of 30 things and they don't know what's right based on their budget, like that's what AI can actually be good for. but yet that's not where the money is.

That's not where people are innovating. So to me, it's the simplest things that AI could be good for that we're kind of glossing over much in the same way in this scenario, repurposing old drugs. Same simple solution, complex problem, so much benefit, but not a lot of monetization to be that. Something that I neglected to ask, but I think is worthwhile, given your knowledge of health care, medicine, the fact that you took so many of these medications, do you have any worries about how they're going to impact your health long run?

Yeah, it's a great question. The chemotherapies I've gotten are really bad chemos. Like they are known. They absolutely are cancer. Like, it's interesting. The same drugs that treat cancer are actually cancer causing. And they work by damaging DNA. And that's how they actually can be effective.

Yeah, you know, it's interesting because when you're as sick as I was, like that, you don't factor that in at all. Like zero. Like, it's not even a factor. It's like, oh, that would be a great problem to have in the future. Yeah. But then as time goes on, like I remember just even about five years ago, I, after I went through all this, as you know, I was really into exercise and I, you know, former college quarterback. But then once I went through all this, I sort of stopped exercising and I was just sort of like, like, why, you know, like I'm going to be back in the hospital next year. Like, but then there was a point where I was talking to a friend of mine and he was like, no, David. Like it's been a few years. You've been doing well. Like you need to start eating well and start exercising. Like you start thinking about the long term. I was like, wait, the problems of progress. Like, like the, I guess. I to worry about the long term? And like, I think that, um, that being said, um, it's a good problem to have, but it's still a real problem. Um, and so it's important that I do, you know,

the same sort of screenings that other people do, maybe a little bit more diligently. Of course, I do pet scans to look for, um, for, uh, for cancer. I actually in the middle of my journey, um, uh, got a horrible, uh, former cancer called an inflammatory, my fibromatomy my fibrolasic tumor, um, in my liver. Um, and I shouldn't say it's a horrible form of cancer. It was horrible and that it happened in the middle of my Castleman disease, but fortunately, it's a form of cancer that could be resected surgically. And so this came about, like, sort of in the very middle of my Castleman's journey. And I remember when we got the PET scan, Petscan came back very hot, very hot in my liver. And I remember my doctor saying, you've got

this hot liver mass, but you know what? Let's just sort of keep an eye on it. Why don't you come back in like three or six months and we'll rescan it? I remember thinking to myself, I'm like, wait a minute, like why are we doing these scans like you know that I'm at increased risk of cancer based and all the stuff like like shouldn't we like check on it and he's like no no let's just let's just sort of rescan it in three to six months and this was very much in the middle of my like mentality of like no like I'm going to do everything I'm going to do everything and so I went to another doctor and got an MRI a couple weeks later and the tumor had doubled in size just in those couple weeks and so it was because it wasn't just something not to worry about it was it was serious

We did this really big liver surgery. It took five hours, lost a ton of blood, got this, you know, a giant scar from here to here. They got the whole tumor out. And thankfully, I'm knocking some wood. There's been no recurrence. That's not been over 12 years because it was just before I had my last relapse. But I share that experience for a couple reasons. One is that when I first found out about it, and when we first did the initial biopsy,

determined what it was, there was some literature, some papers in literature. indicating that patients with this type of this type of tumor can have Castleman's like symptoms. They can get sick with Castleman's like symptoms. And so I actually got really excited. I was like maybe this tumor has been around all along and maybe this is the cause of my Castleman's. We cut it out and maybe it'll never come back. I remember like this joy, like maybe this is the piece of the puzzle. And then of course I've relapsed for my Castleman's about six months later.

So then of course sadness that wasn't it. But I also share the story just because again, it gets this whole like tension between like my doctor was he's become a friend of mine and he really I think was sort of like David don't worry about it like you stress about everything like don't worry about it just come back in a few months and and I think that it was just sort of another example where I was like no like sometimes we need a stress about it sometimes you don't need to make me feel better let's let's rescan it but of course as you know as a physician we can't rescan everything and we can't like we can't worry about everything I don't know what your takeaway is from that it's so hard because like I

think about a patient I had not too long ago who came in because she had a abdominal pain, mild nausea, no fever, I don't even remember, maybe plus minus diarrhea. And her sister, who was in the medical field, told her that she thinks it's appendicitis. And she came in, I'm like, totally reasonable, tell me what's going on. Again, mild symptoms, generalized abdominal pain, pressed in the right lower quadrant, zero anything, no rebound, no guarding, no acute abdomen. I'm like, you don't have appendicitis. Like, look, I'm pressing on your area where your appendix.

I'm doing the other tests. So I said, like all these things to show that it's not. And she's like, all right, well, like, I get it. I'm like, but look, if something changes, here's what you need to do, et cetera, et cetera. I find out the next day, she fever spiked, really high, emergency room, ruptured appendix. Yeah. But does that mean I should scan everyone with CT scan who has abdominal belly pain? Totally.

So it's like what's the takeaway from that other than make sure you give people really good. red flag symptoms of when to go to the ER. Yeah. Yeah. Besides that, I don't know what else to take away from it because every time there's going to be a different approach and what I try and teach my residents and fellows that I work with is think about the person that's sitting in front of you and if you're deciding this for yourself, think about yourself.

Are you a person that's more anxious provoked or more someone who brushes things off? And if you're more likely to be someone who worries about everything, perhaps you should find a doctor that is more reassuring that counteracts that to some degree. That's right. And if your patient is always worried, you know that perhaps when they say it's a 10 of 10 pain, it might not be. Yes. Versus if you know someone who's brushing things off, you have to take that to consideration

and say, oh man, they're saying it 4 out of 10. To me, that should ring alarm bells. Yes. And that's where really knowing your patient and continuity of care and why I love family medicine really ties into having a good relationship with your doctor. I love that. And that's hard to do over one visit. to visit in an urgent care setting when you're overrun

and they're giving you 10 minutes for an appointment because that's the realities of our healthcare system. So that's why I'm a big proponent of primary care. Because I think without that, you're really relying on just chance and what do you wanna do? Yeah, exactly. And that's tough.

Do you want fries with that order? Yeah, exactly. Because sometimes it does come in that scenario where someone comes out, I just want this. Yeah. Similarly to how you had your experience with the first doctor who you said, hey, can we just do the genetic test?

and they said no. I've had scenarios like this where I say to a patient, I don't think this is the right move. I think you're really going down the wrong path. But the harm of getting the test was only my ego getting hurt. So I said, you know what?

You want this. I don't know if insurance will cover it because that's outside of my scope. But if you're willing to deal with those consequences, I'm happy to order it because I don't think it's directly harming you. Exactly. So I try and take that approach

a little bit more often. And sometimes it's not great. Patients come in a lot of times with primary care with a viral, illness that's very obviously viral and they want antibiotics. And you say, no. Well, I say middle ground. You really want it.

You're really nervous. I see why you're worried. Let's do a team-based approach. I'm going to send the medicine to your pharmacy so that if you need it over the weekend when you're not perhaps getting good access to a doctor, you can reach for it. But perhaps that reassurance of knowing you have it will lead you to not take it. And we could give you 48 hours to a chance of watchful waiting. I love that.

And some have great buying with it. some immediately go get it, but we're trying something to understand that human connection a bit better. I love that. So patients seem to have better buy it with it. But it's constantly a learning thing. That's why medicine is the most humbling professional I think. It is.

Yeah. Like there's so much you learn from every patient interaction. I'm sure you learned a lot from your patient's failures as much as your own personal failures. Absolutely. Yeah. What's the rest of the journey look like for you? Where are we going next? Where are we in five years?

So in five years, we will have identified, hopefully, 10, 20 new treatments for diseases they weren't intended for. We've got a really ambitious goal with every cure where a nonprofit organization, we got started three years ago. And we hope over the next five years to take 15 to 25 drugs that are used for one disease and show they work in another disease and in bad debilitating conditions where there aren't solutions. I mean, for me, that is like the most exciting thing. With every single patient, every single drug, it's, it's hard to describe what that means, but it just means everything. And so when we think about impact over the next five years, that's where we want to be a place for 15 to 25 drugs, four diseases they weren't intended for, thousands of patients

alive and well, doing great thanks to those medicines, and really thinking about in five years time, how do we make sure that this just becomes the norm? That it's not like this whole AI effort to find new uses for medicines, that there's one little non-profits doing. But how do we start getting the concept of using drugs across multiple diseases to be sort of part of the system? And when you think about it, drugs are used, as I mentioned, off-label quite about 20 to 30% of prescriptions are off-label. There's some famous examples of drug repurposing. So most people have probably heard about Viagra and how it's repurposed from heart disease to, to its well-known use, but most people don't know is also repurposed for a rare pediatric lung

disease, pulmonary arterial hypertension. Kids were dying because they weren't getting enough blood flowed to their lungs. You give them Biagra, they get blood for their lungs and they live full lives on Biagra. Thalidomide is another great example where it causes horrible birth effects in pregnant women in pregnant women in their offspring, but it also is really effective for leprosy and multiple myeloma, cancer, which again, leprosy of myeloma are so different. And you're like, how the heck does the same drug work? But it highlights how two diseases that can look very different can actually have the same underlying problem

and therefore can benefit from the same drug. And so it's happening, but the examples I share, Tocelism, has another example, of course, steroids for examples, where drugs are used across multiple diseases. But in most of these cases, there's a very clear economic incentive. It's a new drug or it's a drug that's recently on patent to find these new uses for it. And so we've got to create a system where it doesn't matter

where a drug is in its patent life, it's still, it's how effective is it? And so I think that in five years' time, hopefully we will have really demonstrated the potential of the existing drugs we have and that we're looking forward at, you know, at maybe dozens or hundreds of diseases that we're able to help with the drugs we already have. Where does the funding for your organization come from? So right now we're about 50% funded by the U.S. government from an agency called ARPA-H and the other 50% from individual philanthropists and donors, individuals who believe that if a drugs at their CVS, that it should help patients in need. And we're so thankful for those individuals. Where can people go to support? They can go to every cure. Out of work. You can

donate online to our nonprofit. You can also help to raise awareness for our work. Some of these medicines, they've already been shown to be effective. They're just not being utilized. We've got to get the word out. That's why I'm so happy to be on this podcast with you. It's like getting the word out. And every single viewer or listener can help get the word out. It might just be sharing a post that you make or that I make. That can actually help to get medicines into people's mouths because they're already out there. They're already FDA approved. And another thing that individuals can do is tell us about drugs that have been used off label for you. Is there a medicine that Dr. Mike's given you that's helped you with something it wasn't intended for? And what's that experience been

like? We want to then look into our AI platform and see, you know, why would that drug like COVID-Refat the disease and dig into it further? So between helping to raise awareness, donating towards our work, and then telling us about repurposing ideas, that's a way that all of us can be a part of addressing this really, really important need. We can't go without your personal journey. People have fallen in love with your path and where you're going. Where can they follow along your personal journey? So you can go to either chasing my cure.com or David Faganbaum.com, which is a little bit harder to spell. But you can go to that website. No socials? You can go to socials. Yes. Easier to find on the website. We had D. Faganbaum's

on Instagram. You can find me on Facebook. And yes, you can follow along our work. We're sharing about all these repurposed drugs we're using. We're sharing about patients that had benefited from repurposed drugs and sharing the lessons from this journey. And then at some point in the future, I don't know how long it'll be. But you mentioned film earlier. So Wendy Finerman, who produced Forrest Gump and Devil Wears Prada. She's also doing Devil Wars Prada too right now. She is working to turn the book into a film, which should be really exciting and just a great way to get the word out about all of these lessons we've learned and about the power of the medicines we already have. Yeah. Well, for all the negatives that we say about social media, the reason we're sitting together

is because Dan over here saw you on social media from Humans of New York. Shout out to them for highlighting your story. And hopefully we can be that platform that also highlights your journey to someone else. I think that would be incredibly valuable. Well, this means so much for you Dr. Mike. Mike, I look up to you so much. I admire you so much. And to be able to spend this time with you, it's just, it's been awesome. Yeah, very awesome. And I know I'm not Bill Gates and it's a drop in the bucket. I'd love to donate $10,000 to your foundation to help continue on the journey and encourage my audience. Donate if you can. We also do something called, are you familiar with Patreon? I'm not. No. So Patreon is basically an add-on that you can get your audience to pay

for for like a monthly membership to get extra access to live streams, to behind-the-scenes content, just some other added value. And we take the $9.99 that our members give and and every month we choose where to donate it. So I'm going to push this month's donation as much as I can my sway because people vote for it. It's wherever the members want it to go. But hopefully, based on our conversation,

they're going to be very passionate about pushing it to your organization. Oh, that means so much. And hopefully the funding that goes towards our work helps a viewer or multiple viewers that's supporting this. That's what is all about. Thank you so much for your transparency,

your honesty. And most importantly, your hard work. I mean so much. Well, thanks so much for having me. I can't think of another. doctor that's trying to do as much good as Dr. Faganbaum. It's truly amazing the amount of people he's going to help. Again, he's finding cures using low-cost generics that already exist. Truly amazing. Definitely go on support him. Speaking of support, if you want to support this podcast,

please don't hesitate. Give us five stars on this episode. Give five stars to our entire show. Leave a comment, support because it does help us find new listeners and viewers. If you want another recommendation, check out my episode with Sophie Grace Holmes. She's an endurance athlete who ran 36 marathons in 36 days, all while living with a lung disease known as cystic fibrosis. Scroll on back to find that episode, and as always, stay happy and healthy.