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Dr. David Fajgenbaum nearly died five times from Castleman Disease before deciding to find a cure for the rare disorder himself. As the clock was ticking, he discovered that the inexpensive kidney transplant drug sirolimus could save his life. Nine healthy years later, Andy speaks with David about how that experience motivated him to save more lives by finding new uses for existing medicines.

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Follow David Fajgenbaum on Twitter @DavidFajgenbaum.

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Check out these resources from today’s episode: 

• Check out David’s book, “Chasing My Cure: A Doctor’s Race to Turn Hope into Action; A Memoir”: https://www.amazon.com/Chasing-My-Cure-Doctors-Action/dp/1524799637/
• Learn more about Every Cure: https://everycure.org/
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• Order Andy’s book, “Preventable: The Inside Story of How Leadership Failures, Politics, and Selfishness Doomed the U.S. Coronavirus Response”: https://us.macmillan.com/books/9781250770165

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For additional resources, information, and a transcript of the episode, visit lemonadamedia.com/show/inthebubble.

Transcript

SPEAKERS

Andy Slavitt, David Fajgenbaum

Andy Slavitt  00:18

It’s IN THE BUBBLE with Andy Slavitt. Welcome. You have my email. If you don’t, it’s andy@lemonadamedia.com. I really enjoy getting your emails. They’re incredibly smart and thoughtful. so impressed with everybody listening to the show. Okay. Today’s episode is about common sense meat science. So it’s a positive show. We are like common sense, right? We all think we’re, we have common sense. We all think our kids don’t. And we do. That’s just the way it goes. And we all like science, like science, anybody listening to the show, I think appreciate science. There’s a lot of great science out there. But still diseases that are killing millions and millions of people every year. What if, okay, here’s the what if, what if these medications that had been approved by the hundreds of 1000s that are sitting on shelves, and approved to treat one thing by the FDA could actually save people’s lives in other medical conditions? It’s gotta be possible, right? It’s gotta be possible, that medications, which do things to ourselves, to our body, that make us react certain ways, can have more than one purpose, right? Well, that’s the premise of Dr. David Fagan Baum, who is a young man who found himself with a unusual disease with no cures, and not a lot of time. So, in that situation, what David did was he said, I have no time to get an emergency medication approved, I’ll be dead by then. So what I’m going to do instead is see how this disease works. And see if there are medications off the shelf. That would help me. Can you follow me? Right? He’s saying I only have time to figure out whether or not there’s some medication already improved that would help me, it’s a really interesting way of thinking. And guess what? He did? He did. Otherwise he wouldn’t be on the show today. And guess what else? He’s decided if we can do this, for my disease, maybe we can do this for lots of diseases. And that’s what he’s all about right now. Trying to figure out how to completely rethink how we think about medicine, to completely rethink how we think about fighting disease in a way that provides a combination of common sense and science. Common science, he wrote a book about all of this. It’s called chasing my cure. fascinating, interesting. We wanted to have him on the show, to talk about this. And I think this is one of those episodes, that you’re probably coming at going. I never thought of it that way before. And wow. Now I have a completely new way of thinking. That’s cool. And do that thinking. But do it in an in the bubble t shirt, baseball hat. And with the in the bubble coffee mug, lemonadamedia.com. Go to shop, you’ll find very handsome, black T-shirts. They’re slimming. They’re attractive. They go with everything. And they go with the baseball cap and the coffee mug. We should send one out to […]. Because of the great work he’s done. We should send him a free hat. He seems like a very tall guy. So the hat might be the safest bet. Here he is.

Andy Slavitt  04:11

David, welcome to the bubble.

David Fajgenbaum  04:12

Thanks so much for having me.

Andy Slavitt  04:14

And you’ve had a really incredibly unique story. You became severely ill, as a young person while you’re going to medical school, you almost died. And then your journey began. And the journey has led to some pretty miraculous and productive places. Can you tell us a little bit about what happened to you? Sure.

David Fajgenbaum  04:38

Sure, well, I went from being this healthy third year medical student. I wanted to become an oncologist and memory of my mom, who had died a few years before while I was in college, to becoming critically ill all of my organs started shutting down my liver, my kidneys, my bone marrow and my heart, my lungs. All started shutting down for an unknown cause. I mean, it was it was terrifying Andy and I went from taking care of patients to all of a sudden walking down the hall to the emergency department where they ran some bloodwork and did some scans. And they explained to me that that my organs were all shutting down and I would need to be hospitalized right away. So I was admitted and then transferred to the intensive care unit, where I had a retinal hemorrhage that made me blind in my left eye. Thankfully, temporarily, I gained about 70 pounds of fluid because my liver and my kidneys were not working. And I really just drifted in and out of consciousness. for weeks and weeks with no diagnosis, we had no idea what it was. That was literally killing me. And at really the last possible moment, a lymph node biopsy was done, my doctor said I might have lymphoma. And so they cut out one of my lymph nodes, and it came back that it was castleman disease. This rare immune system disorder, your immune system attacks your vital organs until you die. And I was so sick at that moment. That actually my doctors came in and told my family to say their final goodbyes, and a priest came in my room and read me my last rites. I was 25 years old.

Andy Slavitt  06:05

Yeah, priests is not who you’d want to see in your hospital room. So what does he do? Get him out of here? What is he doing here?

David Fajgenbaum  06:10

Exactly. This is not a good sign. And I was very confused, you know, because of how sick I was. But I knew it wasn’t good. And I said goodbye to my family. And, you know, thankfully, I’m alive today, thanks to medicines that I received during that time. And thanks to this concept of repurposing that I didn’t really know anything about even though I was a medical student, but it literally saved my life. And now we’ve saved a bunch more lives.

Andy Slavitt  06:37

Yeah, well, I want to go there, because I think you are introducing us to it, I think it’s a whole new paradigm of how to think about drugs and drug approval. And I love kind of diving into new paradigms. I will say I did see a couple of photographs of you. And you went from someone who was almost as ripped as I am. To someone who well, quite honestly, is looked about more like I, I wish I looked. But it was amazing. He didn’t look like the same person. And it just shows what a disease and treatment and steroids and all those things can do to your body. But it opened up this whole world of having a disease that very few people have measured in the 10s of 1000s. Right, as opposed to the hundreds of 1000s and millions. For people out there who have a rare disease, is it just incredibly lonely. Feeling that sense of being ignored? What is it emotionally like?

David Fajgenbaum  07:29

Yeah, it’s frightening, right? You know, when you get a diagnosis that you’ve never heard of, and that the medical community doesn’t know anything about. It’s terrifying. I mean, I was a medical student before. And I shared that, that my mom had passed away from cancer. So I had watched the medical community sort of coming up with answers for brain cancer. And all of a sudden here, I was with this disease, castleman disease where the community didn’t know anything. And it was like, well, we don’t know why this happens. And we don’t know really, you know, what’s going to happen to you. And we’re just going to give you chemotherapy and see what happens. And, and of course, I kept relapsing, I mean, this disease kept coming back, and I nearly died a total of five times end over a three and a half year period. I mean, it just kept coming back. And, and each time when I say nearly died, I mean, it was like I said, goodbye to my family, and this was it. But as you said, you know, thanks to, you know, modern science and medicine, and we were able to save my life. But it was terrifying. It was, I guess, also, for me, it was just sort of like enlightening in the sense that I learned a lot about the healthcare system, that unless you’re able to advocate for yourself, unless you’re lucky enough to have family and friends that can be you know, knocking on doors and making phone calls. It’s really, really hard and use the word lonely. I think that’s, I think that’s a really good way to describe rare diseases.

Andy Slavitt  08:46

So some of the things that I didn’t know that I learned from understanding your experience is that, well, you know, rare disease may be something that, you know, by definition very few people have, that’s why they call it rare. If you add up, the disease is 7000 diseases that are classified as rare diseases, you get to about 30 million people in this country are about 10% of the population. And that’s a lot of people in aggregate. And the fact that they’re 95% of them, don’t have an approved medication for them. It just, it just makes your head spin to think that there are 10s of millions of people who probably have clinicians have a hard time diagnosing what’s wrong with them, until they find the rare one who’s seen it before. And that they then get told, you know, sorry, your situation is so unique. We don’t have a real answer.

David Fajgenbaum  09:45

That’s exactly right. And I mean, I think so many of us in medicine. I’ve described this concept as the Santa Claus theory, and that’s that we assume that there must be teams of researchers working diligently and collaboratively to come up with solutions and that you know, see As you get diagnosed with a horrible disease, Santa Claus is going to deliver your cure, you know, to you at your front door. But the reality is, is that for the 7000, and maybe even more rare diseases, in many cases, there’s no one working on developing a cure. There’s no one working together, you know, in a collaborative way to try to figure out a solution. And when you are diagnosed with these diseases, your doctor tells you that there’s nothing else we can do, which, you know, maybe it was a little naive for me to think about medicine like that. But I can tell you, there certainly are others that you know, assume that when we need health care that it will be there to take care of us.

Andy Slavitt  10:37

I will tell you that that when you get a bad diagnosis, rare disease or not, you know, that authority figure of the physician and that institution of the Academy of Medicine, it’s something that you really do, you have no choice, you put all your chips in that one, basket, and most of us spend our lives avoiding risks like that only to find yourself in a place where you become completely dependent. And so something in the course of your illness happened and there was a discovery that you made that really turned things are out for you. Can you talk about that?

David Fajgenbaum  11:15

The fourth time that I nearly died from my disease, I was on an experimental drug, the only drug to ever undergo a clinical trial for my disease, and it didn’t work. And so my doctor explained to me that there were no more promising leads, and the chemotherapy was eventually stopped working, and I was going to die from this disease. And I turned to my dad, my sisters and my girlfriend at the time, Caitlin, and I promised them I would dedicate my life to trying to find a drug that could maybe save my life and other patients with my disease. And, of course, I was a third year medical student, so maybe it was a one in a million chance that, you know, I would maybe get lucky and find something. But I knew that there was a 0% chance that I would survive if I didn’t try to get involved in searching for something. So I returned to Penn where I was in med school at the time and found some lab space from someone who didn’t study Casselman, but had some free lab space. And that she lent to me and created an organization called the castleman disease collaborative network to try to push for the science. And I worked in worked and we built this network. And we built a community of patients and physicians and we crowdsource the right research ideas. I worked in the lab. And despite all that hard work, I relapsed again, and I nearly died for the fifth time. Somehow, I survived that fifth one. But I knew I was running out of options. But importantly, when I was getting those weekly chemotherapy infusions, I was also storing weekly blood samples on myself. And so what that meant is that when I got out of the hospital, I was able to go to the freezer and take out all these blood samples I’ve been storing on myself, and get to work performing experiments on those blood samples to see if I could figure out is there something going on in my immune system that is going wrong, and maybe there’s an existing drug that that could be repurposed to treat it, I knew that was my only chance of survival, Andy was, was to find an existing drug that can maybe fix my problem. And so over the course of weeks, total of about four weeks, I ended up identifying that a key part of my immune system seemed to be turned into overdrive. And the best part about what I found is that there’s a drug that can turn that part of the immune system off. It’s called sirolimus. It’s been around for decades, it was developed for kidney transplantation, and it had never been used before for my disease. But given I had no options, we decided to try it.

Andy Slavitt  13:26

So basically a drug that would prevent your immune system from getting the signals that it needed to turn on, because it was turning on when it didn’t need to. This is where the story gets super, super interesting. Let’s do a quick break. Let’s come back. And let’s talk with David about what happens next and how this discovery has led to a basically a different way of thinking about how we should look at disease and drugs. Okay, David, you were telling us before the break, that you had looked for this idea of finding an existing drug that you could repurpose, to essentially stop what was happening to from happening. So you found this drug, it was basically a theory, you were the only one with this theory, that there were no clinical trials or no tests. The drug was not indicated for what you had it was indicated for kidney transplant recovery. What did you do?

David Fajgenbaum  14:46

So I took the data to my doctor and shared it with him. I just finished medical school a couple months earlier, but certainly was not in a position to prescribe it to myself. And we looked at the data and he said, Look, you Are there no other options right now I don’t have anything else in place of this. And you’ve made a compelling argument and you have data in front of you. So both from my, the blood tests that I’ve been running, but also I had a part of my lymph node cut out and, and had some pretty clear evidence that this part of the immune system was turned in overdrive. So he said, you know, I’m going to I’m gonna write the prescription. And amazingly, it was immediately approved by the insurance company, because it’s an inexpensive generic drug, the insurance company had no questions at all, you know, you’d like to think that there’s, you know, a lot of steps for these sorts of things. But the reality is, is that 1/3 of all prescriptions in the entire United States are what are called off label. So the drug is being prescribed for something that is not indicated for 1/3. And so there’s obviously a lot of precedents for this. Now, most of those are for things where everyone in the medical community agrees Oh, yes, that drug works well, for that thing. So you should prescribe it. It’s very rare when it’s, you know, the first use ever, but certainly, there is precedents for it.

Andy Slavitt  16:01

Okay, so, if it was an expensive biologic drug, the insurance company would have probably said, no way. Hey, sorry, David, we’re not going to pay for this. And you would have been essentially forced to pay for the neuron. But as luck would have it, it was expensive medication. So it probably just escaped, you know, whatever flag they put up. Okay, so you got to prescribe the drug. And then what happened?

David Fajgenbaum  16:27

So then, within about three or four days, I started noticing some symptoms improving and notice some of my blood work was getting better. Now, when I get really sick, and I’m in the ICU, everything is shutting down, my blood work is horrible. So by the time I started on the drug, I was in a better position than that. But even still, I was seeing improvements in symptoms and my blood tests. And so I thought maybe the drug was doing something. But I was also really afraid that I was having some sort of like placebo effect, where I was just like, you know, so hopeful that this drug was gonna work. And so for me, the way I thought about it was, this is going to be a test of time. In the last three years, I’ve nearly died five times from this disease. And every time I thought I was better, it came back. So it’ll be a test of time, let me see how long this remission goes for. And so about four months later, my wife and I, we made it to our wedding date, May 24, 2014, we actually were able to get married, that was a huge milestone. And then all of a sudden, it was 8 months, and all of a sudden, it was 12 months. And it was all of a sudden, the longest I’d ever been in remission. And the milestone just kept sort of piling up and actually end on January 5, I just celebrated nine years that I’ve been in remission on this drug. And you know, I never could have imagined when I was, you know, in another ICU over those three years, that I would ever be alive and well, 9 years later.

Andy Slavitt  17:45

How frequently do you have to take it?

David Fajgenbaum  17:47

I take three pills every day, and then once a month, I get an infusion. And I’ve been doing great, you know, for 9 years.

Andy Slavitt  17:54

Wow. Wow, incredible. Okay, so, first of all, what you did and how you stored your blood samples, very few people would have done. And then most people even if they’d have done that would have gone. Okay, great. Check that box. Let’s go. I’m newly married. I’m beginning my career as a clinician. I’m at a hoity toity school like Penn. Let me just move on with my life. But you did something different. You asked the question. Can I generalize about rare diseases from what just happened here at UCLA, generalized, but other rare diseases? So tell us what your thought process and what you ultimately decided?

David Fajgenbaum  18:32

Sure. So right after business school, I am joined the faculty here at Penn, where I’m just as you said, I started conducting research and I’ve just been completely laser focused on this idea of how can we unlock the full potential of his existing medicines. I mean, I’m literally alive today, because of a drug that was at my neighborhood CVS that no one had ever thought to try for three years when I nearly died for three years, five times. No one ever thought to try it. And all we had to do was unearth it, and it saved my life. And so I am completely laser focused on trying to answer this question, how many more drugs are at your neighborhood CVS, it can be lifesaving for you are for someone you love. And so early on that was really focusing on castleman disease, we want to figure out how many other patients with my disease would benefit from my drug. And thankfully, we have patients all over the world that are honored and doing well, unfortunately, between the drug that I’m on and one other drug that only helps about half of patients. So we still have another 50% of patients that we need to develop more drugs for.

Andy Slavitt  19:32

So it only works on half of people with castleman or so?

David Fajgenbaum  19:35

Exactly, unfortunately. So we’ve still got work to do with the other half, which is meant that here at Penn through my center, and then also through the castle’s these collaborative network, we’ve continued to try to identify additional treatments that can be useful for castleman disease. And I also expanded my center to focus on other inflammatory disorders, we call them cytokine storms, which of course no one ever had heard the term cytokine storm until three years ago, and everyone started using it and In COVID scenario. Now everyone is an expert literally outside against yours. So Casselman is a cytokine storm disorder. Basically, this means the immune system gets out of control, which is what happens the most of your COVID patients and I run the center for cytokine storm treatment laboratory. We call it the castle, here at Penn. And so, through our center, we’ve been focused on identifying new uses for drugs. And Andy, I am so proud to share that we’ve identified nine more drugs that can be utilized for diseases separate from what they were intended for. And one of those drugs that I’d love to share with you is one that required no brilliance whatsoever. It was for cancer called angiosarcoma. Patient came to our center in 2016. He had heard about repurposing in my case. And so we did some really basic searches to understand were there any studies that had ever been done in angiosarcoma, that could point to maybe some drug that can maybe be useful. And we found a paper from 2013, so three years earlier, that suggested that a part of the immune system could potentially be helpful if you targeted in treating angiosarcoma and which started Michael as the first patient ever with angiosarcoma on this particular treatment and immunotherapy. And it has now been seven years that he’s been in remission doing well, and patients all over the world are receiving this immunotherapy. The reason I love this example so much is because like I said, at the beginning, it required no brilliance whatsoever, all we had to do was find work that someone else had done, that was sort of buried and lost and unearth it, and then translate it into giving it to a patient and now the entire field of angiosarcoma, their treatment has been changed. And so this is the mission that I’m on and that we’re on. And we just launched a new nonprofit six months ago called every cure, which is focused on trying to figure out all uses for every approved drug in your pharmacy.

Andy Slavitt  21:56

You could call it the MacGyver center. Now, I don’t know how many people out there, my audience is smart. So they know what the MacGyver then it went, but I’m talking about from it with mcgyver. But this idea, that is when I talk about a new paradigm, that sort of, traditionally we’re thinking in that the FDA, you know, clinicians are taught to think about drugs is very traditional, develop a drug for an indication, and you map the drug to whatever that indication is. And this paradigm is different. It basically says, drugs, do a whole bunch of things. Think of them as tools in your toolkit, like MacGyver, who’s looking at this toolkit and says, okay, which of these would work best? Yep. And what I have going on and what I see going on, and I think it’s you said there, it’s not that people don’t prescribe things off label people do. But to say, we could systematically look at these rare diseases and say, what can help you now that exists in the tool chest. It’s just a completely non-traditional way of thinking.

David Fajgenbaum  23:03

That’s right. And I don’t think that I would have ever thought about it, unless this way of thinking saved my life. And now it’s like, wait, okay, it saved my life. And now we’ve saved all these other lives, how many more lives are waiting to be saved, with cures that are sitting, you know, at their neighborhood pharmacy?\

Andy Slavitt  23:20

Alright, well, let’s come back after our final break and talk about what diseases, we’re going to be able to solve this way. And notice, I said, we really probably should have said to you and your team. But I wanted a little bit of credit, and what the process is for making this kind of a better way of life, we’ll be right back. Help us understand how many diseases you’re targeting, what kind of progress you’ve made, and what conclusion you’ve reached about matching these drugs to these rare diseases?

David Fajgenbaum  24:13

Sure, so we launched every cure about six months ago. And as I shared before the break, our mission is to unlock the full potential of every drug to treat every disease that they possibly can. And so we’ve been able to get to work over these last several months and run some early beta versions of the tool. And we’ve been able to identify a number of really promising new uses for existing medicines. And I say a number of because we haven’t run the full 3000 drugs against 12,000 disease analysis yet, but that’s what we’re doing. And that’s what we’re building towards.

Andy Slavitt  24:49

What kind of technology to use, is it kind of neural network kind of analytics?

David Fajgenbaum  24:53

It’s a couple of technologies combined together. So alright, maybe it’s a three. The first is using knowledge graph as our underlying source of evidence and knowledge graphs are basically ways that you reduce down the world’s knowledge about drugs, diseases and targets into one place. The second step is then to generate a score. So between every drug and every disease, funnel that information down into a single score, so you get a score from zero to one, depending on how strong the link is between that drug and disease. And the third piece is using artificial intelligence to make it so that you can learn from what works, what doesn’t work, and continue to improve the algorithm. So it’s really bring together three technologies all at once. And what’s so cool is that this is the right time to do it. Because all three technologies are really maturing at the same time. They really are. And so it’s like, we finally have all three things converging at once. And, and of course, in our case, we’ve been able to demonstrate our ability to take early insights and translate them into helping patients. So we have a number of really promising hits, in parallel to getting these early leads, and trying to build out this technology. We’re also doing a bunch of fundraising right now. So we can build out the full team. We announced our launch at the Clinton Global Initiative back in September, and we’re able to build some really great early momentum, getting a number of partners on board. We’re doing some other things really outside of the box, like going directly to pharmaceutical companies and trying to understand what are the drugs that are now generic that were in your pipeline? And what are the diseases that you thought about for those drugs before they went generic? Which is not something that’s ever been done before? Sort of that’s information that sort of typically sits within companies.

Andy Slavitt 26:30

And how do they feel about this? Do they like what you’re doing the pharma companies?

David Fajgenbaum  26:34

Yeah. So what I’ve learned thus far is that there’s a lot of enthusiasm for being able to share that information with us. But it’s a matter of how do we actually operationalize this right. Like, there’s a lot of people within companies, right, yeah, we love this idea. You know, we’ve spent a billion dollars and spent all this time to develop the drug. And now it’s generic. So we’re no longer doing research on it. But we love the idea that you all continue to find more benefit from it. But actually turning that into reality. And operationalizing, it is not trivial, because it’s never been done before, this information has always stayed within companies. But we feel like, if we’re going to honor the full potential of every medicine, we need to work with every part.

Andy Slavitt  27:10

It’s just a matter of resources. So what are you gonna do with your Nobel Prize?

David Fajgenbaum  27:17

No, no, no Nobel Prize, I’m just, you know, I’m not supposed to be here. Like, you know, there’s no one in the world. If you saw me in ICU 12 years ago, and then 11 years ago, and then 10 years ago, there, you would said, There’s no way that you’re going to be here. And so given that I’m here, and I’m not supposed to be here, it’s just about eking out every ounce of life that I’ve got, and trying to figure out, you know, all these new uses for drugs.

Andy Slavitt  27:42

But that’s chapter one of your story. That’s not even your story now is think of all the other people that are here that weren’t supposed to be here. Yeah. Like to ever just think about all these people that you don’t know and have never met, who are alive today, because of this approach?

David Fajgenbaum  28:01

I think about it all the time. I mean, that’s really what drives us. It’s sort of a, you know, there’s contagion to it, right. It’s like, you know, every time I meet one of these patients, what meet one of these kids meet their families, it’s like, oh, my gosh, like, we didn’t even have to develop the drug, we just had to match the drug to the disease. I mean, you know, the numbers, it costs a billion dollars takes 10 to 15 years to develop a new drug, we can have the exact same impact, by just figuring out a new use for an existing drug as though as spending a billion dollars, it’s taking 10 to 15 years. And so yeah, I mean, on a completely individual patient basis, it’s, I mean, it’s I can’t put into words what it’s like when I when I meet patients who are alive because of these discoveries.

Andy Slavitt  28:43

Okay, so what does the FDA think?

David Fajgenbaum  28:45

FDA has been really positive, of course, they want to make sure that all of the trials that we do, that we share the data with them for a label change to make sure that the drug doesn’t just have the initial disease that it was approved for. But also we’ll have the new disease area on the label. That’s something that we’re, you know, really supportive of. But we also recognize that for some of these rare diseases, it will be in it would be really expensive to do a trial that’s quote unquote, big enough and robust enough for a label change, versus you might have to do a smaller trial, which doesn’t result in a quote unquote, label change doesn’t result in new approval, but patients around the world will still be able to get access to it. And so, you know, FDA is supportive, and you know, we’ve heard, you know, positive things from them. But of course, they want to make sure that we go through the traditional route, and I would like to, but we may not be able to in every case.

Andy Slavitt  29:40

They know that people prescribe drugs off label. Their official position is obviously they can’t be supportive of that. But they know what happens. That’s why I’m curious, like if you see them throwing up any potential roadblocks, if in fact, what you’re doing with sort of […] outside of their purview. But yet it’s helping people and particularly oftentimes helping people in the examples you’ve given who’ve had very little chance otherwise.

David Fajgenbaum  30:11

Yeah, I think that there’s kind of two areas that may create some potential friction. I mean, the first is that if there is a disease where, where we do a trial, and it demonstrates the drug is effective, but that trial is not done under an IND. So let’s say the original, the originator of the drug is not willing to submit the data to the FDA right now, laws require that if a drug is generic, the generic manufacturer cannot submit to the FDA for a label change, it actually has to be the original, the originator of the of the drug, the original manufacturer of the drug, and by then those companies may not be interested. And so they may not be willing to submit the data to the FDA. And so we may be in a tough position where even if we want to submit it, the FDA, we can’t because the way that the laws are currently written,

Andy Slavitt  30:59

are you yet in a place where people are lobbying you to prioritize their disease? Or someone in their families disease? Are you yet you know, running into those battles? And if so, how do you deal with that?

David Fajgenbaum  31:11

Absolutely. I mean, the day that we announced this from the Clinton Global Initiative, we’ve been getting inbounds daily from disease organizations, from individual patients, from family members of patients, what we’re really excited about is letting the data tell us like what is the most promising drug to help them most patients in the most meaningful way, and letting the data sort of direct us to the opportunities as opposed to, you know, if you pick a particular disease, there may not be a drug that exists that can treat that disease, right? I mean, there’s just may not align up. But if you look across all drugs, and all diseases, there are a lot of opportunities to help a lot of people. And so it’s challenging for that reason. But then, of course, the other thing is challenging is that, you know, you meet a patient who’s suffering from a horrible disease or their families like you want to go after it.

Andy Slavitt  31:58

Yeah, you know, it’s really uncomfortable position to be where you’re sort of playing God in some ways and saying, Yes, we can do this. And that that has to begin with a lot of headaches in humanity. And a lot of times some of these decisions get made, as you know, is, you know, a funder will come along and say, hey, you know, my, my child, or my mother died from this disease, here’s a $5 million grant, go study this one. And, you know, those are often the choices that researchers have to unfortunately, face. They’re challenging, right? All right, I want to close, if you don’t mind, by asking you to tell us about your mom. And what she was like, it’s clear, she inspired you. You lost her young, a lot of people who didn’t have a chance to get to know their parents as they get older. But will be I think, relate to your story and your relationship.

David Fajgenbaum  32:52

I would love to and as you know, from reading my book, I talked about her so much. Because she’s had such a huge impact on me. My mom was, and I know, this probably sounds cliche, and people often say how amazing you know, their, their deceased loved ones were but my mom was, was really one of the one of the most incredible people that I ever met. And, and what really stood out about her, a lot of things stood out, but in particular, was that she had this sort of relentless feeling that she needed to always be giving back and sort of always helping other people. That was something that she felt this tremendous responsibility to do. And so, you know, growing up, it was just about every weekend, it was my mom doing some sort of volunteer activity with some organization that meant something to her. And that was just expected that was just who she was. But what I loved about it was, she also loved doing it. It was like, it wasn’t like, oh, I have to go do this thing, or it’s like a responsibility. It was, it was an opportunity that she felt that she had to help people she grew up in, in the Caribbean island of Trinidad, and both my parents did. And, you know, I think felt very fortunate to be here in United States and very fortunate of health and all those sorts of things. And so she gave back and she loved it. And she was so gritty. When she was diagnosed with her cancer. I just I watched her fight cancer with so much willpower and grace. That fast forward a few years and there I was in ICU, you know, having my last rites read to me, and, you know, battling this disease, I had a bit of a playbook. I saw the way my mom lived her whole life. And then I also saw the way that she battled cancer and frankly, it helped me so much in the way that I battled castleman disease.

Andy Slavitt  34:43

So that you had a little bit of, you know, what would she do in this situation? Exactly. I can’t imagine you know this, but I’m sure you get told us all the time. But how amazed and proud she would be of what her son has done and what music established and how much does that drive you? How much do you do you stop and think about that, because it’s, it’s really sad when we lose someone we love early. But for those of us who’ve been in those shoes, this idea that you’re carrying their legacy and are trying to make a contribution for them and you together, like you have your own kids. Right. And, you know, you hope that they see that and carry that on is it’s a pretty powerful combatant to the grief itself, but also, you know, to giving you purpose, right?

David Fajgenbaum  35:35

Absolutely. No, I mean, what you said is the, it’s the best compliment that I can receive. You know, when someone says that, and shortly after her passing, I actually started an organization when I was in college called AMF which my mom’s initials, her name was Amory Fajgenbaum and organization. AMF was for college students coping with illness or death of a loved one ailing mothers and fathers is what EMF stood for. And for me, it felt so important for me to create a living legacy of her. So what I learned when I was dealing with in coping with her loss, and creating EMF was just how powerful it can be to take one’s grief and loss and suffering and to channel it into something like that. And, you know, to create AMF in my mom’s memory that that continues on, obviously, was life changing for me, and then now, to be able to continue to channel the pain and the hurt and the suffering that I felt during my disease, but also that I observed from other patients into what we do here at Penn, the CDC and also through every year. It’s been, it’s been incredible.

Andy Slavitt  36:39

Well, on behalf of everybody I tell you will tell you keep going, don’t waste your time talking to people like me, you could have spent, you could have spent this hour, productively curing a disease and but it was great for the rest of us.

David Fajgenbaum  36:53

Well, Andy, you know, we made every renamed every cure every year, because we really feel like this is something that we need everyone on board for. And you know, the only way that we’re going to let people know about what we’re doing through every cure, and hopefully get them involved in helping to raise awareness and raise funds for what we’re doing is by getting the word out to people. So thank you so much for the opportunity to get the word out about every kid to everyone listening.

Andy Slavitt  37:32

Alright, I want to tell you about a great show coming up that I’m super excited for. Scott Galloway, Scott Galloway, if you don’t know Scott Galloway, Google, and he’s been on the show before, not for a couple of years. There’s an amazing article about Scott in the New York Times came out a few weeks ago. If you have access to that, you’ll find it fascinating and where he’s coming on. Shortly. We’re also going to do an episode about how small organizations, small charities, small groups can participate in some of the government funding that comes out of DC. And particularly a lot of funding is coming out from the inflation reduction act around a bunch a whole bunch of initiatives. And I think that’s an important show because I think it often feels like these things are baked. And you know, we read about billions of dollars being spent and we’re like, where’s that money and then you find out that some like massive corporation is making bank on it. And that’s not that’s not how it should be. So that’ll be one of our shows coming up too. I can’t wait to bring it to you. Thank you for listening. And whatever day of the week it is what day of the week is a Kyle? Monday. We don’t even know what day of the week it is here and in the bubble. That’s how hard we work. Today’s Monday, which means I want to wish you a very good week ahead.

CREDITS

Thanks for listening to IN THE BUBBLE. We’re a production of Lemonada Media. Kathryn Barnes, Jackie Harris and Kyle Shiely produced our show, and they’re great. Our mix is by Noah Smith and James Barber, and they’re great, too. Steve Nelson is the vice president of the weekly content, and he’s okay, too. And of course, the ultimate bosses, Jessica Cordova Kramer and Stephanie Wittels Wachs, they executive produced the show, we love them dearly. Our theme was composed by Dan Molad and Oliver Hill, with additional music by Ivan Kuraev. You can find out more about our show on social media at @LemonadaMedia where you’ll also get the transcript of the show. And you can find me at @ASlavitt on Twitter. If you like what you heard today, why don’t you tell your friends to listen as well, and get them to write a review. Thanks so much, talk to you next time.