45 | Overtime: A Conversation With Dr. David Fajgenbaum - Alive Again

Episode Transcript
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Speaker 1 (00:07):
You're listening to Alive Again, a production of Psycopia Pictures
and iHeart Podcasts.

Speaker 2 (00:13):
Preparing to Die is now grieving every single loved one
that you have that you're not going to be with them,
So it's every one in the world all at once,
and that was just heartbreaking and devastating because you're now grieving,
you're losing to all of them at once. And then
to the other point is then that the switch just
completely flips when in my case, all of a sudden,

(00:35):
I start waking up and I'm like, oh my gosh,
I'm want to get some more time here. You know,
five times now I should have died, and thankfully I
was able to survive and find this drug. But are
there other things you know, that are hiding in plain sight?
So that became an immediate thought. I was like, Wow,
you know what else is in that CVS that could
help more people?

Speaker 1 (01:05):
Okay, okay, hello, and welcome back to Alive Again. Today's
guest is doctor David Fegenbaum, a physician scientist whose life
has repeatedly balanced on a razor's edge. During medical school,
he was diagnosed with Castleman's disease, a rare and deadly
condition that nearly took his life five times. With no
effective treatments available, he turned his desperation into determination. As

(01:28):
both patient and scientist, David made a radical decision. If
no cure existed, he would chase one himself, even if
it meant experimenting on his own body. What followed wasn't
just recovery, it was transformation. David co founded the Castleman
Disease Collaborative Network and eventually discovered a repurposed treatment that
has saved his life and many others. Amazingly, his disease

(01:50):
has been in remission for well over a decade. Alive
Again is about what happens after you cross that threshold
where life nearly ends. David's story lives There about clarity
that comes from crisis, similar to what one of our
other guests, Eric Larson, said that the best way to
be successful is not to have any other choice. Well,
David didn't, and it's about turning fear and suffering into

(02:14):
not just survival but service. David is a scientist, physician,
and disease hunter. His work has since helped save countless lives,
but he began with one simple, brutal truth. He didn't
have time not to try. His mission has grown too.
He's gone on to save and improve lives by repurposing
existing medicines to treat diseases that they weren't originally designed for.

(02:36):
What he calls finding cures hiding in plain sight. Whether
in the lab, on stage, or through his book Chasing
My Cure, He's been driven by the belief that even
in our darkest moments, hope and action can lead to
breakthroughs that change lives. Doctor David Fagenbaum, thank you so

(02:58):
much for joining us on the Live Again. It's really
an honor to have you here.

Speaker 2 (03:01):
Thanks so much for having me.

Speaker 1 (03:03):
First of all, what is this cool view that we
have behind you?

Speaker 2 (03:06):
So this is I'm in Philadelphia. So if you look
behind me, that's Market Street again from from West Philly
to Center City.

Speaker 1 (03:13):
Nice. Nice. I just watched Creed with my son Roman,
who's like ten years old, the other day.

Speaker 2 (03:20):
Well, we're very proud of Rocky and Creed and all
of them here in Philadelphia.

Speaker 1 (03:26):
So yeah, I you know, I was so excited to
talk to you because, you know, Alive Again is it all?
It's all about like these what happens with people who
cross the threshold and I quickly realized early in the
show that you know, there's a lot of spectacle behind
some of these people who've had near death experiences or
brushes with death. And I quickly realized the spectacles great

(03:49):
to get listeners, but what I want people to walk
away with is just an understanding of you know, a
better understanding of their relationship with each other, of their
relationship with themselves, and the just an idea of the
forgity of life and the resilience of the human experience.
And you know your story really lives here.

Speaker 2 (04:11):
Sure well, yeah, I'm just thrilled to be a part
of this now, the opportunity to reflect a but on
some of these lessons I learned from from nearly dying
and to your point, more importantly, how that's changed me
since then. Yeah. I grew up in Rolegn, North Carolina,
two amazing older sisters, two amazing parents supporting me and
guiding me. I fell in love with football at a

(04:35):
very young age, college football in particular, and probably around
the age of maybe eight or nine. I told my parents,
I'm going to play Division one college football and I'm
going to be a quarterback. And I set my mind
to it, and that's just about all I thought about
for the next ten years. I had posters all over
my walls with how far I was throwing the football,
how fast I was running, and I was sort of tracking,

(04:56):
you know, everything I possibly could, wow, you know, on
that mission and to one day played college football. That
was about all I could think about. So I ended
up working really hard and playing well enough that I
had an opportunity to play college football at Georgetown. And
you know, we're not known for our football, like maybe
those Georgia Bulldogs are that are near you, but yeah,
but we certainly do a divisional football team, and that

(05:16):
sort of was that that was the goal, and I
felt like I hit that and I was heading off
to Georgetown as a freshman to be a quarterback there.
And uh, and then my life just got completely turned
upside down because two weeks after I got to college,
my dad called to tell me that my mom had
brain cancer and the most severe grave four glioblastoma, the worst,

(05:37):
the worst of the worst. And that just completely destroyed
my foundation for how I thought about the world and
what was right and wrong, and it just it was
it shook me to my core and and and It
also set me on a mission because I watched my
mom suffer for the next fifteen months battling this you know,

(05:59):
horrible for me came and that just sort of grew
in me, this relentless desire to do anything and everything
I could to take down these sorts of diseases and
to alleviate suffering so people like my mom didn't have
to go through this sort of stuff. And so so
I promised her I would dedicate my life to becoming
a doctor and searching for treatments for patients like her.

(06:19):
She passed away a year after her diagnosis, and I
also promised her that I would create an organization in
her memory called AMF. It stood for Alien Mothers and Fathers,
and then eventually became actively moving Forward for collegens grieving
the death of a loved one and ended up scaling
that into a nonprofit and being able to help a
lot of people in her memory. But her life and

(06:40):
what she taught me in her life and then also
her death really drove me to the career and the
path I'm on Now that's amazing.

Speaker 1 (06:50):
I'm curious about the how that grief transformed into what
were some of the steps that was it an immediate
aha moment or was there a period where you're like, Okay,
I really need to figure out how to make this
work so that I can be of service to help
in this kind of suffering or this kind of grief
for others.

Speaker 2 (07:06):
It was a pretty quick aha moment. It was basically
the moment that I learned about her cancer and learned
about treatment, and learned about the horrible prognosis and sort
of wrapped my head around the number of diseases that
are out there that don't have solutions that I just thought, Wow,
what else could I possibly do in life other than this?
I mean, I can't. I couldn't fathom. As soon as

(07:28):
I saw her suffering, I couldn't fathom doing anything else
other than trying to alleviate this sort of suffering. And
so that was just immediate, And I mean I literally
just immediately became pre mad, immediately started taking those courses,
and like you know, I was going to go to
medical school. That was sort of a done deal. I
think that in terms of creating that nonprofit AMF, that

(07:52):
wasn't something I thought about until my final conversation I
had with her before she passed away. It was two
weeks before she died when I had my last conversation
with her, and I had never thought about the idea
of creating this organization in her memory. But she was
really worried about how I would be after after she passed,
and and I sort of just in the moment, just said, Mom,

(08:12):
I'm going to create this organization in your memory. I'm
gonna call it a MFOs or her initials. I didn't
know what it would stand for, but once I made
that promise to her, it was you know, it was
my final promise I made to her, and so I
was gonna do everything in my power to make it happen.
And it also I made the promise because I saw
how challenging it is to lose a loved one and
to grieve and suffer, you know, watch someone suffer while

(08:32):
you're in college.

Speaker 1 (08:33):
Did this how do this feel? Did it feel like
your purpose was like this was meant to be or
did it feel like was there any kind of not
a premonition, but you know what I mean, is there
any kind of like sense of like, Okay, this this
pathway makes sense, It feels right, you know, whether it
was an idea of like this is my destiny or
whether it was just something that was that seemed to fit.

(08:56):
Is there anything like that with your with your thinking.

Speaker 2 (08:58):
Yeah, it's a good question. I mean I think that
for one, it enabled me to keep my mom alive.
It helped them to keep her spirit alive. I mean
college students all over the country were sitting in AMF groups,
you know, leaning on one of their shoulders, crying with
one another and supporting one another, which is like really
the epitome of who my mom was. She was this
incredible supporter. It was just there for everyone. And so

(09:19):
I mean still to this day, there AMF chapters all
around the country, and you know, kids are supporting one
another during their toughest moments and they talk about AMF.
They have no idea that who my mom was or
any it ever even was named or after Amory Fagnbaum.
But that's a way to truly keep her spirit alive.
And so I think I loved that. I Mean I
didn't know I was doing that when I decided to

(09:40):
do it, but within like days of starting to build
this thing called AMF that was supporting people that it
was just like, Wow, I can keep my mom alive.
In this way is this is who she was. She's
helping you know, thousands of people all over the country
even in her death. So I think for one that
was really really powerful for me. The other is that
I learned pretty quickly that channeling my energy towards something

(10:05):
that was positive service to others was the best way
that I was going to grieve for death. It was
going to help me to create this thing to help
other people. That that just you know, it became super
clear again really quickly. And then the other thing too,
that I think turned this into such a focus for
me was that my mom, often during any tough time

(10:25):
in our lives, would tell us not just to look
for silver linings, but look to create silver linings. And
so this to me was a perfect example. You know,
looking for silver lining is saying, Okay, my mom was
really sick, and while she was sick, my sisters and
I got tighter than ever. That that's finding a silver lining,
and that that's true. That was a true silver line
that we found. But creating a silver lining was my

(10:46):
mom has died from brain cancer, and I'm going to
create an organization that's going to help other grieving college
students and I'm going to become a doctor to help
people like her in the future. That's it. That's creating
a silver lining. That's the kind of thing that my
mom always encouraged us to do. Don't just look for them,
but look to create that. And so I think when
you bring all those things together, it just it became
a total, you know, obsession, sort of the same way

(11:07):
I wanted to play college football. That's all I can
think about really for the next ten years.

Speaker 1 (11:11):
I love that, that idea of creating your own solution
and creating just the impulse for creating in general. I'm
a storyteller, I'm a filmmaker. I'm not sure where all
these crazy ideas come from. Just following that creative spark
when it happens is such a is one of the
most wonderful things about living, I think. So take us
to the next steps if you would like leading up
to the next part of your story.

Speaker 2 (11:30):
Yeah. So I graduated from college. I went to Oxford
for grad school to study cancer prevention, did a master's there,
came back to the States for medical school, came to
the University of Pennsylvania for med school, and very much
you know, marching down that path. I made this promise
to my mom, I'm going to become a doctor. I'm
going to help people like her continue to grow. AMF.
We were reaching thousands of college ins all over the

(11:52):
country through Greef support networks and also through community service activities,
and it was, you know, we were keeping my mom
alive is as I mentioned, sort of her spirit alive
through MF. And then right around the time of my
third year, started third year of medical school, so I
was twenty five years old. I'd actually just delivered my
first baby on my obgyn rotation, which in medical school,

(12:15):
delivering babies is sort of a pretty pinnacle moment, right
to bring life into the world. And right around that time,
within a couple of weeks, I started feeling more tired
than it ever felt before. And I had always worked
insane hours and sort of never slept, and that was
just sort of who I was. But I was so,
so so tired, and I was noticing these in large

(12:37):
lymptods of my neck, I was noticing fluid of my ankles,
and I just felt more unwell than I'd ever felt before.
So I made it to a medical school exam on
that Friday, and then I went straight from the exam
to the er where my doctors ran a number of
tests and they told me, David, your liver, your kidneys,
and your bone marrow or shutting down. And we don't
know why. We had to hospelas you right now, and

(12:58):
so they hosplize me right away. Within a couple days,
I was in ICU I all with no diagnosis. I
had a retinal hemorrhge. It made me temporarily blind in
my left eye, gained about one hundred pounds of fluid
because my liver and my kidneys weren't working and I
needed daily transfusions is to keep me alive. Again, no diagnosis.
We didn't know what was killing me, but but it
was clear that I was dying.

Speaker 1 (13:18):
What was the illness? What was the diagnosis? When you
finally found that out? And how did that affect you?

Speaker 2 (13:24):
So about eleven weeks in, when I was at my
lowest point, sort of you know, truly out of options,
was when I finally got the diagnosis. If a disease
called idiopathic multi center Castleman's. It's a disease where your
immune system attacks your vital organs. It shuts them down
until you die. It's relentless unless you use chemotherapy to
try to turn it around or stop it. But even

(13:44):
when you give chemo, you typically relapse. So my doctors
gave me a bunch of chemo. You know, I got
the diagnosis sort of just in time. You know, I
certainly would have died if it had been a day
or two later, but got it just in time. Got
a combination of seven different chemotherapies that were made for
multi My loan went for lymphoma. They weren't made for castlemans,
and really just this sort of last ditch effort, like

(14:04):
can we just try something to save him? And they
worked and I survived, but then I started having a
number of relapses, and unfortunately that was just the beginning.

Speaker 1 (14:13):
What was the just out of total curiosity, what was
the mechanism by which the chemotherapy affected the disease, Like
what was happening with your tissues?

Speaker 2 (14:23):
To do you do?

Speaker 1 (14:24):
You know it was triggering it in the first place,
So idiopathic.

Speaker 2 (14:28):
While to send your castle disease, we call it idiopathic,
it means unknown cause we don't know what triggers it.
So basically, your immune system destroys your vital organs and
with no understanding for what's happening or why. But the
reason the chemotherapy is used is because your immune system
is going crazy and it's killing everything. What is a
medicine that is really good a killing the immune systems?

(14:49):
Actually chemotherapy. You know, we think about that as a
side effect in cancer, and you try to kill cancer
as a side effect, you destroy the immune system because
immune cells are rapidly proliferating just like cancers. Well, if
you give the worst chemotherapy at the highest possible doses,
you destroy the immune system. And the dis immune system
is destroying me. And so that was a good thing.
So we destroyed my immune system and that saved my life.

Speaker 1 (15:12):
Oh man, that's I can't imagine what that would have
been like to go through. So you're sort of at
death store. You're like, let's try whatever worthing, and it
happened to put you into remission.

Speaker 2 (15:29):
Yep.

Speaker 1 (15:30):
Wow, that's stunning.

Speaker 2 (15:31):
And before the it was tried was when I was
at my lowest and I had my last rights right
to me in November of twenty ten. So my doctors
told my family, told me friends, this is it. He's
not going to make it and priests came and read
me my last right, I said goodbye to my family.
It was horrible.

Speaker 1 (15:50):
Can I can I explore that a little bit with you?
Of course, It's just just curious, like what that process
is of looking at death store and knowing that you
only have a day or two left. What were some
the things that were going through your mind and relative
to like saying you're goodbye to your family, or the
idea that you would wanted to leave this legacy, you know,

(16:10):
in your mom's name, and you know you probably the
heartbreak of that, But just just walk us through some
of what that psychology is, Like, how do you how
do you even deal with with that view?

Speaker 2 (16:21):
Yeah, I mean it was it was so difficult. It
was I I was just used a heartbreak. I mean
I was just heartbroken that I wasn't going to be
able to help these patients. And remember my mom, I
promised her I would do it. I was heartbroken that
I wasn't going to be able to spend more time
with my family and my friends I just adored so much.
I had this amazing girlfriend, Caitlin, that I wanted to

(16:43):
have a family with. One day, I was heartbroken I
wouldn't be able to do that. And I just it's
hard even to put into words what that film was like.
It just it just didn't feel like it was fair.
It was just sort of like, but there's all these
other things I want to do to help you, well,
like I just like, give me some more time. I
just want to help some people, like as you know.

(17:05):
And I was just so so sad that I wasn't
going to have more time. And I also should mention
that because my liver and my kidneys weren't working, I
also didn't have like my full sort of brain functioning.
I was, I was, you know, really unwell, and so
I wasn't really I don't think I was able to
go to the depth of sort of like critical thinking

(17:26):
and maybe even exploration that I would have gone to
if if I wasn't so sick. But but you know,
your liver and your kidneys play critical roles in filtering
out toxins from your blood, and so I was sort
of as toxic as you could get in the sense
that I just and my brain wasn't working particularly well.
So there was just a lot of sadness, a lot
of a lot of grief that that I wasn't gonna

(17:47):
do all the things I wanted to do.

Speaker 1 (17:49):
Did did any other emotions occur? Like anger or were
you frustrated or were you just sort of too sort
of diminished to even you know?

Speaker 2 (17:58):
I was. It was one hundred percent sad, zero percent anger.
And and that's probably partly personality. I mean, I think
that you know, all of us probably bring our whatever
our personality is, is probably going to get amplified when
you face death. And so I think you sort of
really get to know who you are when when you
strip everything else away, and like you know, what's your
sort of default mode, what's your like you know what

(18:20):
happens when when when the when the cards are against you,
because you know there's no scenario where the cards are
more against you than you know, when doctors are telling
you you're going to die in the next twenty four
or forty hours. So I think that, I mean, for me,
and it sort of uncovered me, like it was one
hundred percent sad and a zero percent anger. Uh. But
then there was a really big another emotion that happened
a few days later, and that's that, you know, I

(18:41):
got all this chemotherapy and then I started to wake
up and uh, you know what's the inverse of sadness. Well,
it was just just pure joy and gratitude, right, it
was like, oh my gosh, like I'm going to get
another day. I don't know how much longer I'm gonna get,
but I'm getting something, and boy is this something awesome.
And I mean, like I remember, like you know, I

(19:02):
was in the hospital for a few more weeks after
started getting better, finally got out of the hospital. I
remember the first night I was home and I was
at my I was with my dad and my sisters,
and I went to set the table and I remember
the I remember setting the table with such intention and
such pride. I was like, I'm first off, I'm just
I'm walking, which is amazing, Like that's incredible. Second, I'm

(19:25):
not in the hospital. And third I'm alive and I'm
not you know, I don't know how much longer it's
going to be, but like I'm gonna set this table
better than anyone's ever set a table before it, because
like this is awesome. I get to set the table
and I just remember like placing these napkins and being
so thankful that I could place these napkins on a
table so I could have a meal with my family,
right right, That.

Speaker 1 (19:46):
Makes a lot of sense. I've suffered some grief in
my life, and I've lost some some very special people
that were very near and dear to me, and and
sort of it's it's I keep that close to me,
not so I could be in a morbid space, but
just so that you know, when i'm you know, put
my fund away, when the kids come home, put the
computers away home. It's just like respect for that moment

(20:09):
and gratitude for that moment. We were lucky enough to
speak with Aaron Ralston. He's the subject of that film
one hundred and twenty seven Hours, the guy, the man
who was stuck in Moab and he rock fell and
crushed his arm and he had to eventually, after six
days with no food and water. Pretty miraculous, he figured
out how he could amputate his arm in order to

(20:30):
possibly survive. Wow. But he before that happened, he had
hit a moment where he was like, Okay, this is it.
I'm not going to make it. And he had a
you know, a video with him of camcorder and so
he hit recordings, just started to say thank you to
everybody he had loved, his family, adviyes and everything. But

(20:51):
he said this remarkable thing. He said, it's impossible to
experience gratitude or he said, it's impossible to hold gratitude, dude,
and despair simultaneously. And he went on. He went further
to say, it's even a brain, a neurological thing, like
you're Amigdala, shuts down when you're in a state of gratitude,
so that it's not even possible to have that that

(21:13):
despair and vice versa. When you're in a state of despair,
the lights which goes the other way, and it's impossible
to be in a place of gratitude. And I always
thought that was miraculous.

Speaker 2 (21:22):
Yeah, I agree, I mean, and that's that's why I
described it as the inverse of you know, inverse of
I mean, and that was just sort of the first
and human mind because for me, it was just totally
black and white, right, it's you know, it's just grief
and sadness and mourning. And you know, to your point
around the loss of loved ones, you know that you've
had over the years preparing to die, is now grieving

(21:44):
every single loved one that you have that you're not
going to be with them, so it's every one in
the world all at once, and that that is just
heartbreaking and devastating because you're now grieving, you're losing to
all of them at once because you're going to be gone.
And then to the other point is then that the
switch just completely flips when in my case, when the

(22:06):
chemotherapy kicks in and all of a sudden, I start
waking up and I'm like, oh my gosh, I'm want
to get some more time here, and and it just
just such gratitude. And people do often ask like, you know,
weren't you like mad that you went through this and
still holding on to feelings, And I was like, absolutely not.
I mean, for me, it was just like, oh my gosh,

(22:28):
I've got some more time. There's no time, there's no
reason to waste time or energy on anything other than
just gratitude and positivity and like making the most of
every moment. And I think, again everyone's different, and everyone
sort of, like I think, gets broken down to their
fundamental elements in these sorts of scenarios. But for me,
it was there was no anything other than just gratitude
and thanks, thankfulness, well.

Speaker 1 (22:49):
Tax ut to the next step, so you know you
hit then after that apparently a roller coaster of remissions
and getting better and then remissions. But yeah, just if
you could continue to do your story.

Speaker 2 (23:04):
Sure, So yeah, I got out of the hospital and
then about a month later I was back in the hospital.
Spend another this time seven weeks in ice. You in
critical condition again, you know, doctors didn't think I would survive. Again.
I got multiple chemotherapy agents. Again they worked, but it
was again one of these things where it was like
no one thought it was going to at work, and

(23:25):
I was so cool when when they started to work.
But when you add up that first about six months
after my diagnosis, from August through February, I spent nearly
that entire time hospitalized, and most of that time in
a critical state where I could have died at any time.
There were three moments where it was very clear I
was going to die, and where I actually said goodbye

(23:45):
to my loved ones. But you know, at any point
over the six months I could have died. And getting
out of the hospital after that six month period, I
was put on an experimental drug that used the word
hope earlier gave me tremendous hope because I heard there
were other people with my disease that had gotten on
this drug and that it had helped them, And so
I left the hospital with lots of hope for the future.

(24:08):
I also left the hospital reflecting on sort of what
helped me get through it, and I think that there
were three things that were sort of the key ingredients
to get through that six month period. So the first
is that I spent most of that time thinking about
the future that I wanted, which was a family with
my girlfriend Caitlin, and a career dedicated to finding treatments
in memory of my mom. I just stayed focused on

(24:29):
those are the two things I wanted. I could envision it,
I can imagine it, no matter how much pain that
was going through. I kept picturing that thing that I
was looking towards. The second thing is that I had
incredible support around me. So my dad and my sister's
really never left my side. There wasn't probably more than
a few minutes over that six month period where either
my dad or my sisters weren't in the room with me.

(24:51):
I mean, that's incredible, right. That support I needed by
my side was essential. They were supporting me. They were
encouraging me, even encouraging me to breathe. At one stage
I was I was sort of getting ready to let go.
And then the third was to really take things one
step at a time, and it was it was truly
like one breath at a time. Every breath hurt because
of all the fluid in my lungs, but I needed

(25:12):
to keep breathing if I wanted to survive. And so
it's sort of like one at a time. And it
could if if at the beginning you'd have been like David,
you're going to suffer the worst pain and organ dysfunction,
and it's going to be horrible, and it's gonna be
six months long. I couldn't have put up with that.
I couldn't have I couldn't have handled that if mentally
I knew it was going to be six months. But
I could handle one breath, and I could handle, you know,
twenty breaths a minute. I could handle, you know, one

(25:35):
hour at a time, and maybe maybe i'd keep an
ad up to one day at a time, and the
days stacked and and so by the end of it,
I made it through. But but I really found that
those things were essential.

Speaker 1 (25:45):
I am another guy that we have had on our
show in a wonderful interview with a polar explorer named
Eric Larson. Eric had been through many, many polar expeditions.
He's I think he's no for being the last guy
to be able to physically walk one of the poles,
but now that the ice is melting so much, it's
not something you can do any wow. But he's he's

(26:08):
suffered so much. He's, you know, been face to face
with polar bears, and he's he's dealt with so much
survival stuff out there. And then at some point he
was diagnosed with stage four colorectal cancer, and so we
interviewed him to talk to him about how maybe some
of the things he had learned out on his polar
expeditions where he had reached places where there was literally

(26:29):
you would go for thirty days and there was no survival,
like if you got hurt or injured, there was no
rescue for thirty days. And he had been out there,
and so, you know, he said a lot of stuff
that was really that I still try to hold onto
today after having talked to him, one of which was
like small steps, break it up. You have to break
it up into the smallest component, don't look at the

(26:50):
whole picture. You know, consistency is the most important thing.
And he also said this crazy thing that I thought,
you know, it kind of maybe a lookable to your story,
But he said that the best way to succeed is
not to have any other choice. Having to plan b
sharpens everything. And he said, when it's truly life and death,
you eliminate the option of quitting, and that's when people

(27:12):
perform at their highest level. I thought, I mean, that's
a you know, we don't want to ever be at
that place. But I wondered if that was applicable to you,
if at some point you you were like, Okay, I
have no other option here, and how that motivated you? Sure, yeah,
I mean this this You know that that comment really
resonates with me. I'll share a quick comment and then

(27:33):
and then to turn to the next part of the story.
You know, Ever since that first time I almost died,
the closest feeling to what life is like now that
I've had in my life is actually a sense of
overtime and a sporting event. So like when I played football,
and you know, Georgetown, we lost a lot of games
but every once in while we want overtime, and uh,
in overtime of a sporting event, the clock's ticking down,

(27:55):
and that can be that can.

Speaker 2 (27:56):
Create fear for a lot of people. It's like scary,
like you make a mistake the game over, you know,
there's a short, short amount of time. Yeah, but can
also create tremendous clarity because the clock sticking down, there
is no room for error. You have to be completely
locked in and focused and you got to make the
most of every second. And so for me, I've felt
like I've been in this sense of overtime ever since
that first time I almost died, and now it's it's

(28:18):
been five times reps ie goodbye to my loved ones,
and I've approached you know, passing, and with each one
of these I just find that I'm sort of like
in my fifth overtime now where it's like just tremendous
clarity of purpose. So it's the same sort of concept
that that he was sharing, but it gives you this
beautiful clarity. You do the things that you need to
do and that you believe should be done. You don't

(28:39):
do the other stuff, you know, not when you're an
overtime you can't waste your time to other stuff. And
so so I think that that sense of overtime is
something that someone could can relate to that hasn't had
a near death experience, but they've played a sporting event
where they've been in overtime and they can understand that
dance between between fear and clarity. You know, it's it
could be scary or it could just lock you in

(29:00):
and give you total clarity. And so so then to
your question, sort of you know what happens next, Well,
so spend this time six months, most of the time hospitalized,
get out, have all this hope. I'm on this drug
that's hopefully going to keep me in remission, go back
to med school. I'm dating Caitlin. It feels like I'm
back to the life I was having before. I'm still

(29:21):
getting in infusion every three weeks, but I'm hopeful this
drug is going to keep me in remission. And then
I relapse and I almost die. Now for the fourth time,
I spent a month in the ICU critical condition again.
I get all the same chemotherapies. I say goodbye to everyone.
I you know, cry with Caitlin that I'm not going
to make it, but it works. The chemo works. But

(29:43):
the important thing here is now, at this stage, I
now have failed to respond to the only drug that's
being studied for my disease. So like these chemos I
was getting, they weren't made for castlemans. But someone had
finally done a clinical trial of this drug called seltuxamap,
and ID heard it. It helped other patients, and so I
hoped it would help me, but it didn't help me.
So my doctor explained that there weren't any more other
drugs in development, and I was like, well, are there

(30:05):
any leads, like, you know, is there something that maybe
we think looks promising? Is like, no, there's nothing. Like
you've failed to respond to the one drug that's in development.
We've been giving you all this chemo that's made for
other diseases. That chemo is going to stop working at
some point, or you're about to reach the lifetime max
of one of those chemotherapy drugs, adriamisen, so we're not

(30:26):
going to able to give you any more of it,
and so you're unlikely to live much longer period. And
so for me, you know, this is I think gets
to that question you're asking. Remember hearing that, and I'm saying,
you know, there's no more promising leads. We've tried everything.
This is it. You know, we're going to give you
the chemo again. Let's hope it works, but but it's
we're not going to keep doing this. This is this,

(30:47):
This is you know, probably the last time it's going
to work. And if it does. And I remember related
to your question, I remember, you know, being heartbroken for
about a minute. My dad, my sisters, and Caitlin were
in the room and we were all crying, and I was,
you know, snock crying. My doctors now said this is it.
We'd been in the room when my mom when the
doctors told us the same thing. You know, we'd gone

(31:07):
through this once before, we knew what it meant, and
we'd seen it play out the way that the doctors
had told us it was. And at this stage, for me, yes,
I had survived you know, three times before, but it
sort of felt like my luck was going to run out.
At some point. It felt like I was I mean, frankly,
I was playing the equivalent or maybe even a more
dangerous game than Russian Roulette. I was probably playing Russian
Roulette with four out of five chambers you know, loaded,

(31:29):
and I'd played it, you know now four times, So
how likely are you going to be that you're going
to make it, you know, another time. So that was
the sadness that came into it. But now the within
about a minute or two, my mindset just completely change.
And I don't know if I have a great, you know,
explanation for what the change was, but it just immediately

(31:51):
changed from Okay, you know, you're telling me that you're
out of options. Well, up until now, I just believed
that some doctors, some would figure it out for me.
And if I went to the world's expert, which is
this doctor doctor Vanri, that you'll have the answers. And
now doctor Van Reed, the world's expert, is telling me
were out of answers, which means now we've fully we've

(32:11):
you know, fully exercised all of the possibilities that the
world would have. So if I'm going to keep hoping
for a life with Caitlin or a life where I
can help other people, I'm now going to need to
turn my hope into action. I'm going to now need
to start taking action, and I'm probably not going to
solve this disease I'm almost certainly not going to find
a drug that will save my life. But if I'm
going to hope for it, I got to take action

(32:31):
to do it. And I think my decision to do
that was informed by a lot of things. I think,
like I said, watching my mom, you know, go through
what she went through, and we were hopeful even to
the end, but frankly, there were we actually weren't doing
anything to make it more likely that she was going
to survive. We weren't developing new drugs. We weren't, you know,
we were hoping, We were hoping, and then we were waiting,

(32:54):
right And for me, I just just said, I I
can't hope and then wait that it's going to happen.
I've got to turn my hope into it. So I
promised my family that I would dedicate the rest of
my life, like literally every minute, for howver much longer
I had, trying to find a drug that could save
my life. And I knew I didn't have a billion
dollars or fifteen years to make a new drug, which
is about what it costs and how much time it

(33:15):
takes to make a single new drug. But I remembered
that those seven chemotherapies that my doctors had given me
weren't made for Castleanes. So I thought to myself, Okay,
well you told me that there weren't any drugs for
Castleman disease, but you also just used seven drugs that
weren't for Castleman disease that saved me. So like, how
do we know there's not an eighth drug somewhere that

(33:35):
could save me? I mean there's four thousand of proved drugs.
Have we tried all four thousand drugs for Castleman's right?
And of course the answer is no. But for me,
that's all I could think about it. It's like, Okay, you
proved to me that you can use a drug that's
I made for my disease to save me. I've also
seen Castleman's drugs help patients with other diseases because they've
been repurposed for other diseases. Right, how do we know
there's not another drug out there that could help me?

(33:57):
So that became my mission and it was just locked
in laser focus. I've got to do research on my
own blood samples. I've got to get as much data
as I came in other patients of castle and disease
to understand what's going wrong. And then I've got to
see is there a drug that's made for something else
that could possibly be repurposed to save me?

Speaker 1 (34:14):
And you've got to do this all within what three months?
Four months?

Speaker 2 (34:17):
You're thinking, like I figured I had, I had probably
six months or so of time, is sort of what
I thought before i'd relapse again. And it turned out
that I actually had about twelve months, so I was
able to get some some progress made in those twelve months,
came up with some hypotheses. Maybe most important, I started
storing my blood samples in the freezer so that way,

(34:39):
if I survived, I would be able to go back
to those samples and perform research on them. And sure enough,
I relapsed. So I had my fifth one, and I
was so heartbroken because I just felt like, you know,
I put everything I had into trying to find something,
and I had identified two drugs that I thought might work,
and actually i'd even persuaded my doctors to try both
of them. The first one looked like it was maybe helping,
and then I got worse than the second one didn't

(35:01):
do anything, and so I felt like I gave it
my two shots, you know, I was chasing my cure
and I got two shots. Like I put everything I
had into it for that year. I tried these two drugs,
iv ig and cyclist boring and they didn't work. Yeah,
they didn't work, and and so you know, I really
I was back in the hospital, back you know, critical
condition for another month. I got those same seven chemo therapies,

(35:23):
like I said, approaching my lifetime max, but they basically
gave me it again, said goodbye to Caitlin, said goodbye
to everyone, and again I was just heartbroken that I
was disappointed in myself also that I hadn't figured it out.
You know, I didn't think it was likely I would
figure it out. But like Caitlyn, who was my fiance
at the time, she was convinced I was going to

(35:43):
figure it out. She's like, David, like, you're gonna work
hard and you're gonna find this drug that's gonna cure you.
And I'm like, I wish I had your confidence, Like yeah,
but I wish I had the same confidence you did, Caitlin.
But but I was disappointed that I didn't. I wasn't
able to do that, and that the two drugs we
tried failed and I was heartbroken, and you know, I

(36:04):
said goodbye, and I remember sort of letting go and
saying this is it. And then I remember a couple
days later, starting to wake up again and having this
just tremendous euphoria, like, oh my gosh, I'm going to
have another shot at this, Like I don't know how,
but the chemotherapy worked and I got to make the
most of this time. And so the first thing I
said when I started to wake up, I remember this

(36:24):
so well. This is twelve years ago, by the way.
I remember looking to my left and seeing Gina, one
of my sisters, and looked at my right and seeing
Caitlyn and being like, oh my gosh, g Caitlyn, like
I'm here. I think that I've got another shot at this.
And then the next thing I said was, gee, I
need you to call UNC because there's some blood samples
stored in their basement and their pathology lab, and you

(36:47):
get the scent to Philadelphia. Caitlyn. I used to go
downstairs to the basement here and get all the medical
records you can from Little Rock, Arkansas, from UAMS send
them to Philadelphia, like we got work to do. And
it's like, of course, I'm saying it like I'm healthy now.
Like it was probably like a lot of pauses and
a lot of like catching my breath because I was
so sick. But wow, it was just so clear that
I got another shot at this and I don't know

(37:08):
how much long it's how much time it's going to be. Yeah,
I got to take advantage of it.

Speaker 1 (37:12):
And now you did this. You're in the zone, the
overtime zone.

Speaker 2 (37:16):
Of really in the zone total clarity, locked in all day,
every day in the lab. When I'm at my house,
Caitlin's literally putting plates in front of me and like
telling me to eat, and like sometimes even you know,
putting the food in my mouth, but mostly just being
like you have to eat, and like doing that while
I'm reading something or I'm looking at results, and I'm

(37:38):
just like locked in to try to find something. And eventually,
over the course of the next few weeks, I did
a bunch of experiments on my blood samples. It made
me think that a drug that turns off a communication
line called m tour in night works, m tour is
important for your immune system to communicate with one another.
We thought that maybe that was the source for my
immune system going out of control, and so I started

(38:00):
testing it on myself as the first patient ever with
Castleman's And that was a little bit over twelve years ago.
No relapses, full remission. You know, it almost died five
times in the three years before and now twelve years without.

Speaker 1 (38:15):
So wait a minute. You you rushed through that a
little bit. So you you got the labs, you know,
you got all the help you needed. You got the
blood samples, you got the medical information. You started testing
and experimenting on your own blood and testing your yourself
and looking at your markers, and you saw a correlation
between the mtour. You needed an intour inhibitor, I guess

(38:38):
to stop right from Okay, how did you find a
drug that would stop mtour?

Speaker 2 (38:42):
The beautiful thing about this is that there's a drug
called cerrillonus that is like a perfect inhibitor of M tour.
In fact, it's so good at inhibiting M tour that
M tour was named after the drug. So M tour
actually stands from a Melian target of rapa ice in
rapim ice is of crillimis. Okay, and so it's literally

(39:03):
like this communication line in your body. If you want
to turn it off you go to srillimis or rap
of mice, and that's the other name for it. And
so it was like an immediate connect. Like as soon
as I discovered that m tour was an overdrive, I
meet him said, oh my gosh, there's a there's an
M tour inhibitor for this. And the best part about
it is that it's a drug that's usually used for
organ transplant rejection. That's what it's approved for. So people

(39:26):
are on it for years and years, I mean sometimes decades,
and the drug could have been approved for a couple
of decades at the time, and so I was thrilled.
I was like, okay, you know this communication line basically
the way I envisioned it, and we've now done a
lot of lab work to confirm it, was that M
tour is essential for your immune system to communicate with
one other, sort of an alarm system, and if it's

(39:47):
turned into overdrive, now your whole immune system thinks there's
a fire, and so it is going crazy trying to
put out a fire, but in doing so, it's just
strowing all of your vital organs. And so we thought, well,
if we can turn off the alarm, turn m tour
off with Sarah Lime. Maybe our immune cells stopped trying
to destroy organs because they don't sense that there's some
sort of fire to put out right, And yeah, I

(40:08):
mean they had never been tried before, but here we
are twelve years later.

Speaker 1 (40:12):
That's just amazing. So you're you're you're not sure what's
causing your body to be pissed off? Yep, And you're
not sure what the what is causing this mtour to
just go crazy and start to attend and create this
situation where it's attacking you, but to figure out how
to stop it or a drug that was used to
help people from rejecting organ transplants exactly. Wow, that's brilliant.

(40:35):
That's just brilliant.

Speaker 2 (40:36):
It all happened over a couple of weeks too, And
I mean, I will say when I started taking it,
I wasn't like, oh my gosh, you've saved this. It's
gonna work forever. I was sort of like, the data
suggests that maybe this could help me, and right now
I got no other alternatives, and so I'm gonna try it.
And I knew it would be a test of time
because I had had remissions, I'd had two remissions that

(40:58):
lasted about a year before that, and then I relapsed
on them and I, you know, almost died. It was
as though I had never even been in remission, and
so I knew that I couldn't celebrate because I'd sort
of celebrated a little too soon a couple of times before,
and that made it made it really heartbreaking when I relapsed,
because I was like, we did it, like this is
it like aay? So this time I was I'm gonna
take more of a measured approach. It's I'm in remission today,

(41:21):
you know, like and then it's just going to be
And I started measuring my remission by fractions of a month,
so it was like, you know, it's three point you know,
seven two months of remission, and it sort of kept
stacking and it's like every month it's like, oh my gosh,
I can't leave. It's another month. We celebrated every month
on the fifth of the month, and it was like,
oh my gosh, you know, these things are adding up.
And then and then we made it to Kitin and
I's wedding day May twenty four to twenty fourteen, which

(41:44):
was like just incredible. Didn't think it would be possible
and kind. It's just the month just kept adding up.
Thank you, thank you.

Speaker 1 (41:53):
So now it's been well over a decade, is that right?

Speaker 2 (41:55):
Past? Twelve twelve years? January mark twelve years coming up.

Speaker 1 (41:59):
After the break, we'll continue our conversation with doctor David
Fagenbaum and you'll hear how his story evolves from one
of personal survival to service. It really becomes a story
about all medicine and all diseases.

Speaker 2 (42:12):
Stay tuned.

Speaker 1 (42:31):
Congratulations, that's just such a breathtaking story. But it didn't
stop there. So then next you you had another experience
I think with some another family member or a relative.

Speaker 2 (42:42):
And yeah, I had a lot, I have a lot
of family health experiences.

Speaker 1 (42:47):
And but but this, this seemed to stimulate you to
take this beyond survival towards your initial goal from back
with your mother, of helping others.

Speaker 2 (42:57):
Yeah, tell us us about that, absolutely, yes, I mean
for me, I'll tell you the day that this drug
Sria Limas started helping me, I immediately started thinking, wait a minute,
this drug was at my pharmacy all along, and no
one knew knew to try it. Are there other drugs
at the CVS they could help people that no one
knew to try, like, cause I should be dead, like

(43:17):
you know, five times now I should have died. And
you know, thankfully I was able to survive and find
this drug. But you know, the world wouldn't know about
Sri Limis if not for a lot of things lining up.
Are there other things that are you know, that are
hiding in plain sight? So so that became an immediate thought.
I was like, wow, you know what else is in
that CVS? They could help more people. And then I

(43:38):
decided to join the faculty at Penn right after. So
I finished med school and business school at Penn as well,
and then once I finished, I joined the faculty really
with an eye to let's figure out more treatments for
Castleman's Let's see if we have the struggle work for
more patients. And we ended up eating more patients with
the drug and I'm on Sera limis. It helped some
of them, unfortunate out all of them. The first patient

(44:00):
had help that I saw, this young patient at the
Chosen's Hospital of Philadelphia. For me, that was a major
moment that just gave me so much fuel to see
this young boy Joey who was dying start to get
better on this drug and actually see his blood tests.
Every day. I'd come in his hospital room and his
mom would have a piece of paper waiting for me
with a lab task because she knew I wanted to
see the labs come in. She handed me the paper

(44:20):
and we'd start jumping up and down, like, you know,
things are working, He's getting better. And so so that
was a major, a major you know, accelerator for me
in the way I was thinking about things. But then
to your point, I had a really challenging week in
twenty sixteen April twenty sixteen when both my brother in law, Chris,

(44:42):
he was diagnosed with the ALS and my uncle Michael
was diagnosed with angiosarcoma. So angiosarcoma brings with it about
a ninety nine percent two year mortality, everyone dies within
a couple of years, and ALS brings with it about
a one hundred percent five year mortality and everyone dies
within five years, you know, maybe ninety nine point nine percent.
So these are like probably two of the worst diagnoses

(45:04):
you could possibly get. Same week. So I went to
North Carolina to be with my family. And this is
twenty sixteen, and a major trending point for me was
that I found a paper online describing some research that
people done into my uncle's cancer. So he had, you know,
I mentioned angels sarcoma. Someone had done research to determine

(45:26):
that there was increased expression of this marker called PDL one.
And this is twenty sixteen, but there had been a
couple of years worth of research suggesting that cancers that
I'd increased PDL one can sometimes benefit from a PD
one inhibitor. PD one hiitters had never been used before
for Angreis arcoma or any form of sarcoma. But I,
because I was in Raleigh to be with my brother

(45:46):
in law and my sister, I actually went with my
uncle to the doctor's appointment and I said the doctor,
you know, what do you think about testing for this
and maybe trying a PD one inhibitter. And he told me, said, David,
they've never been used before. They're prohibitically expensive, not even
going to test for it because like you know, it's
never been tried before. And I respond, I'm like, well,
the drug that I'm on had never been tried before,
and it's saving my life. And you just told my

(46:07):
uncle he's gonna die in the next three months, So
shouldn't we at least test the tumor just to see,
you know, if it's positive, then we can make a
decision from there. And he just wouldn't do it. He said,
I'm not going to do the test, and and so
we got to.

Speaker 1 (46:18):
Say afraid of was he afraid of, like there being
some false false hope that would be impair?

Speaker 2 (46:22):
False hope was the big thing he was concerned about,
he basically said, he said, David, you know, I take
care of people with you know, terminal sarcomas, and everyone
comes in here and they want to find something that
could give them hope, but nothing works. You know, they
all die from these horrible sarcomas. And I don't want
to create false hope by saying that there's a possibility.
And I can. I can appreciate that, I really can.

(46:44):
I can. I can see where he's coming from. I
hate false hope. I think that hope can be horrible
and it can be amazing, right, But I think that
if you've got someone who's going to die in the
next three months and there's any chance that you could
help them, I think you have to go.

Speaker 1 (46:59):
For any chance at all.

Speaker 2 (47:01):
Yeah, exactly, So we did the test, it came back
that his tumor was ninety nine percent positive for PDL
one expression. It was blazingly positive. So we actually were
able to get Michael on pemberleism app as the first
patient that we're aware of to ever be treated with
with this PD one inhibitor for angis arcoma, and he
responded incredibly well. Hit by the way hit metastatic as arcoma,

(47:24):
his metastit he's immediately disappeared, his primary tumor shrunk down,
eventually disappeared from scans, and he's been a remission for
over nine years.

Speaker 1 (47:33):
And this is another thing that's impeding the trigger mechanism,
which in this case is PDL one.

Speaker 2 (47:40):
Is that right, Yeah. The problem is is that cancers
put up the express PDL one, and when PDL one's expressed,
when your immune cells come in to look at the cancer,
it actually signals those immune cells to kill themselves. PD
one's answer programmed death lie in. So so these immune
cells they see the cancer because our mune cells are
actually they're pretty good at killing cancer. When they come in,
they see yea they want to kill it. But PDL

(48:02):
one basically says no, Actually immune cell, you should kill yourself.
And so then the immune cell kills itself, and then
it can't kill the cancer. But if you block PD
one and PDL one from engaging with one another, the
immune cell comes in, it sees the cancer, and the
cancer tries to tell it to kill itself, but it's
got a blocker and says, no, I'm not gonna kill myself.
I'm gonna kill you. And then and then the immune
cell is actually able to kill the cancer. So this

(48:24):
triggered this.

Speaker 1 (48:25):
This was more sort of evidence from reality from the
world if you will that if you could just get
enough intel, yep, if we could just match enough markers
with drugs that you know have an impact on that,
then my god, we could probably stop a lot of diseases.
So at some point this this triggered you to begin

(48:46):
a process of let's click as much data and intel
as we possibly can and cross reference. It is that
sort of the next.

Speaker 2 (48:52):
That's exactly right. I mean, my mindset just immediately was, Okay,
we saved my life with a repurpose drug, right if
other patients castle three prose drugs. Now we've repurposed a
drug for another disease that we had no idea about
using no brilliance whatsoever. I mean, Dan, literally, I searched
on a website called PubMed, which is like Google for
medical papers, and I found this paper. I didn't have

(49:14):
to do it. I didn't no brilliance. It was literally
a Google search on PubMed and saved my uncle's life.
And unfortunately it only works in about eighteen percent of patients.
But for those eighteen percent that it works and it's
completely life changing, it's everything for them. Unfortunately, I wish
it worked for everyone with andrew sarcoma, but for those

(49:34):
that it does, it's just life changing. And so it
required no effort and no works. The world had already
done it, and for me, that's when my mindset went
to wait a minute. So we've got all these drugs
that could potentially help more diseases, and we've even got
people doing the research like someone else had done the
research in twenty thirteen to prove that this connection was there,
but no one's connecting the dots. We're all putting out

(49:55):
all these dots all over the world. There's dots everywhere,
but there's no entity that's thematically connecting these dots. And
we've got to do that, and so so that led
me to continue to do more and more drug repurposing,
more and more sort of match connecting, matchmaking, if you will,
the best I could in my lab here at Penn.
We've got a great team, but we can only you know,
go so fast. In total, we've done this to total

(50:18):
of about fourteen times where we found a new use
for medicine and actually help patients with it, which to me,
when I think back to the promise I made to
my mom, you know, in my wildest dreams, I would
have thought maybe one drug. You know, if I have
the most incredible career, I will feel so grateful if
I can take one drug forward to treat cancer like that,

(50:39):
like that, like end of story, and I would feel
very grateful. Not many of us in research don't get
the chance to do that, but here I am, and
I haven't taken one new drug forward in my whole career.
I have done a single new drug, but we've taken
fourteen old drugs. Tell people with diseases, and you know
how much patients care about whether drug is old or
new if it saves their life, we don't care at all, right,

(51:00):
We literally don't care if it was made for our
disease or what. We just care that it saves our lives.
And so so it's like, oh, my gosh, I could
have spent a whole career maybe to get to one
new drug. Or here I am ten years into my career.
I've been able to do this fourteen times, with fourteen
treatments for diseases they weren't intended for. And so and
I'm proud of that. But that's just me and my

(51:22):
little old lab here at the University of Pennsylvania. And
I shouldn't say little lab. We have an amazing lab
here at the University of Pennsylvania.

Speaker 1 (51:27):
But it's just one lab.

Speaker 2 (51:29):
Right. What if we could actually and by the way,
it's not only just one of that one lab focused
on just a few diseases, right, What if we could
actually create a system in an organization that looks across
all drugs and all diseases simultaneously, right, and matches every
single drug versus every disease that it possibly can. And
by the way, enter in you know, early twenty twenties

(51:50):
artificial intelligence to help us to supercharge us in ways
that we never could have before. And so that's why
in twenty twenty two, I co founded a nonprofit called
Every Cure with one of my dearest friends for medical school,
Graham Mitchell, with this idea, this bold idea, that we
are actually going to match every drug against every disease
that it can possibly treat, and we're going to do
it systematically. We're gonna use artificial intelligence, and then we're

(52:12):
going to take the best matches for Jeri's people.

Speaker 1 (52:15):
I you know, I have I struggle with artificial intelligence
on my side as a storyteller and as a writer
and as a you know, a filmmaker, because I believe
that in my case, the writer's block, the suffering is
an essential ingredient to growth, to storytelling, to having Aha
moments and epiphanies. If you don't, you know, no pain,

(52:36):
no gain. Like literally, you know, you can't just go
have an AI run a marathon for you any quicker
than you can have an a I write a script
for you. So for me, I'm like, okay, that's the
suffering is sort of part of the process. You can't
solve a riddle unless you're stumped by it at first.
You won't never have the aha moment unless you first
are stumped by the riddle. But you're this situation is
one place where I'm like so excited about the potential

(52:59):
of leveraging that power. Yep, to see such a wide scope.
Can you talk about the scope of drugs versus you know,
diseases that it starts to look at and how that
process work.

Speaker 2 (53:10):
Sure, And I think the scope is the big point,
big part here for why it's different from what you describe,
because right, you know, what we're trying to do is
we're trying to look across all drugs and all diseases
to find the best matches. That would be like not
asking you to write a great script would be saying
I want you to write all of the best scripts
possible for all theoretically possible movies and then pick the
very best ones that you're gonna you know, pitch, you know, like, oh,

(53:33):
I can't write seventy five million scripts like you know
I could. I can write a couple. And that's the
difference between humans and AI here and so so there
actually are four thousand drugs in eighteen thousand diseases. So
if you tried every drug for every disease, it's actually
seventy five million possibilities so us humans, we can't conceive
of how effective seventy five million possible drug disease matches are, Like,

(53:54):
that's not possible, and we certainly can't then rank among
the seventy five million. Oh that's the best one. But
that's actually prime for what artificial intelligence is really good at.
It's not perfect. It's not where like like you said,
it's not like going to deliver the perfect script, where
it's like this is number one and you don't actually
have to look at any other scripts because, like I said,
out of all possibilities, this is the best script that
could ever be written for any movie ever. And you

(54:16):
could promise me that, like you couldn't do that. Dan
AI also can't do that. But what AI can do
is it can give us a rank order list of
the things at the top are a lot better than
things at the bottom. And you, among all of the
drug disease possible connections out there, these ones look pretty good.
You humans, you should look at these. And so that's
what we do, you know, we humans. We look at
the top one thousand matches that our AI platform gives

(54:38):
us every month, and there's a lot of really promising
stuff in there. We actually already have eleven active programs
right now, just from the last year of reviewing through
the top about ten thousand matches, and so it's doing
a good job. I'm surfacing them to us and has.

Speaker 1 (54:52):
It gotten better? Are you?

Speaker 2 (54:54):
Are you?

Speaker 1 (54:54):
Is it optimizing? Is it? Are you training it or
is it? Yeah, we're training it.

Speaker 2 (54:57):
In our selections or training it on what good looks
like where That's what's another thing that's great about AI.
I mean in the same way that humans can learn, obviously,
AI can learn, and so yes, the predictions are getting
better and better month a month, and we're just so
excited that this is a case where it's something humans
could not have possibly done before that AI is perfectly

(55:20):
suited for. Right It's the one place where AI gives
me so much hope.

Speaker 1 (55:27):
Into you know, talking about storytelling a little bit, it
clearly played a role in mobilizing support and research and awareness. Yeah,
why do you think stories move people in ways that
data alone never can? I'm sure that part of your
marketing and part of what your outreach is has to
do with your own story and with storytelling in general
and being able to share these stories. But yeah, like

(55:49):
I imagine there's a lot of blocks when you come
with data. Imagine there's a lot of blocks in the industry,
a lot of blocks, you know, whether it's you know,
the pharmaceutical industry or the way that the process works
with healthcare. Can you talk about some of those and
how maybe your story and how the stories of these
people that you've helped are able to navigate through some
of that clutter. If that makes sense.

Speaker 2 (56:11):
I think it makes total sense, and I think you've
nailed it if you just try to tell people about
the opportunity here, and you say there's four thousand drugs,
there's eighteen thousand diseases, there's seventy five million possibilities. Drug
companies aren't going to move most of these forward because
most drugs are already generic, so it's not profitable to
advance the vast majority of drugs. We already have talk

(56:34):
about how there's no one in our entire healthcare system
that takes responsibility for finding new uses for medicines. What
you get are a lot of people going, oh, that
sounds interesting. But it's the moment you start saying, and
I'm alive because of one of those medicines, and Joey's
alive because one of those medicines, and Kayla's alive because
one of those medicines, and actually sharing those stories about

(56:56):
those people. Kayla's going to be a nurse right now.
She was supposed to die five years ago, but she's
gonna be a nurse because of a bone marrow cancer
drug that wasn't made for her disease. Joey's gonna be
a finance major and he's in college right now at
Tuple University. These people are experiencing life, They're doing things
that they wouldn't have done if not for this old

(57:16):
drug that wasn't made for their disease. And I think
the moment you start making it real by sharing, not
just because I think it's you know, one part of
it is you could say, well, I'm going to share
that it helped this patient, and for me, I just
sort of test the stuff on myself, Like hearing that
a patient is alive is amazing like that, like that
like that means so much. But if you also add

(57:39):
then you get to learn what they're doing, Like like
when I get to hear, you know, my uncle walked
his daughter down the aisle on her wedding day, Like
that's actually the thing that gives me the most joy.
I mean, obviously, I want him to be alive, and
I'm so thankful he's alive, But it's it's that he's
alive and he's walking his out or down the is
on her wedding day. It's that Kyle is alive and
she's going to be a nurse and she's gonna help

(57:59):
you people in the future in ways that she never
would have before she hadn't gone through what she went through.
And it's that it's the texture of what people can
do after these things save their lives that I think.
I think it's so much more interesting and it's so
much more compelling to people. All I want to do
is talk about all the people we've helped and the
work we're doing, and frankly the programs that we're advancing

(58:21):
right now. We're working on a disease right now called
Bachmann bup. It's only been diagnosed in about twenty people
in the whole world. We've only treated it collectively, this
amazing team of researchers, doctor Baco, doctor Bupp, I've only
treated collectively six people in the whole world. But this
drug has been life changing for five of the six
and so if we end up only being able to

(58:41):
help dozens or maybe maybe there's hundreds of patients out there,
that's going to be amazing and because we're going to
make such a deep difference in those people's lives. And
so I think for me, it's I've just learned that
data is so important. And I've also learned that what
someone is doing while they're on a rug that you
say save their life, you know, because you save their life,

(59:03):
that's data too, you know, I mean it's it's just
it's just a different kind of data. Then maybe the
four thousand drugs, the eighteen thousand diseases, we can you know,
run these analyzes in seventeen hours instead of one hundred days.
Those those numbers are important numbers, and and they but
I do think that you know, we you know, going
back to sort of what this podcast is all about,

(59:24):
you know, life and living and making the most of
our time. And and when you can share about how
this really abstract concept repurposing drugs, using AI to match
drugs and diseases, when you share about the people that
are alive because of it and what they're able to do,
I think that's that's just so important, you know.

Speaker 1 (59:43):
I we talked to one person who's who brought up
a great point, and they had survived this catastrophic event,
and they said, you know, I had to look at
it and ask myself, you know, what have I lost?
And then the next question after they went and reviewed
and they were like, Okay, I've lost this, I've lost that,
you know in your case, it was like I've lost
my ability to walk. And then the next question is okay,

(01:00:05):
so what have you what do you still have? She
she asked herself, and then she took inventory of like
the things that she still has. She still had a voice,
she still had a mind, you know, she still had
a heart. And then she's like, what have I gained?
Was sort of her last question. And I wanted to
ask you the same question, what have you lost?

Speaker 2 (01:00:25):
What do you still have?

Speaker 1 (01:00:26):
And what have you gained? And you know, just in
the simplest terms, after repeatedly surviving what could have killed you,
how do you think about your life and how do
you think about death? Now?

Speaker 2 (01:00:36):
I've got a lot of back. Yeah, no, I've got
I've got goosebumps right now because yeah, I mean I
never would have thought that it's been fifteen fifteen and
a half years since I since I first got sick
and almost died, and I just I don't think I
could have ever imagined being able to answer the question

(01:00:58):
back then that I'm gonna be able to answer now.
So what have I lost? I probably well, I think
that I created a lot of sadness for my family
and friends when I was so sick, and you know
that that it took took you know, joy away from them.
Maybe at the time, I think that maybe it's in

(01:01:25):
a good way, I sort of lost a bit of
a veil around sort of like how how life works
and how you know, things don't always work out the
way they're quote unquote is supposed to work out, and
sometimes you have to have to turn your hope in action.
But the bottom line is that as the reason I'm
getting goosebumps is that I'm really struggling to find things
that I've lost, which is just mind blowing to me

(01:01:47):
thinking of fact to where I was, you know, fifteen
and a half years ago, that that's that's even possible.
What do I have? I have the most incredible job
in the world where I get to just literally spend
my life looking for the most high impact ways to
help people, Like, Wow, what could be better than that?
You know, I get to put you know, the education

(01:02:08):
I got and the training I've got to just finding
things to help people through this nonprofit every cure. I've
got two amazing kids, Caitlin and I have these sweet children,
Amelia who's seven, and David, who's four. And I've got
the most amazing family and friends. And yeah, I mean,
what have I gained? It's it's it's all those things
that I have right now that I didn't have before,

(01:02:31):
and so it's, uh yeah, it's it's sort of hard
hard to believe that I can answer this all these
years later and basically say that I've gained a lot
and I've I've lost very little. Uh yeah, And I
guess maybe the thing that I'm most proud of is
that I've been able to help other people gain some

(01:02:51):
things too.

Speaker 1 (01:02:52):
Yeah. How do you feel about time now? You know,
chasing my cure, you write about urgency and time being
non renewable. Yeah, I had a living with that clock
change the way that you make decisions. Now, I still
feel that same sense of urgency. I still have that
feeling of like I can't believe it hasn't come back yet.

Speaker 2 (01:03:14):
I'm not gonna, like, you know, push my I'm knock
on some wood, but like I can't believe, and you know, like,
as long as it's not back, I'm just gonna sort
of keep making the most of every second. So my
I think my relationship with time is I still have
that tremendous sense of urgency. I can't fathom not, you know,
making the most of every second and every minute and
every day. But I do think that my personality is

(01:03:37):
one where I have to figure out how to balance things.
You can probably hear to my voice how excited him
about every cure, and you know, the sort of responsibility
that I feel like we have given that no one
else in our healthcare system is looking for these low
hanging fruit and that they're right there and there are
people who are suffering today. I mean, imagine the urgency
that you feel when it's okay, there's people are suffering

(01:04:00):
right now in a hospital and there's a drug that's
in that hospital pharmacy could help them, and the only
thing preventing that patient from surviving is how fast we
can find that and we can prove it it works
to help them. And then add to that, Oh and
by the way, David, you're alive because of one of
those drugs that was sitting there, so you can feel
it every morning you take those medicines. You know, the

(01:04:21):
power of existing medicines to help diseases they weren't intended for.
And add to that, you've got the most amazing team
in the world that's working on this. So you've got
all the potential in the world. And we've fortunately been
been able to secure support from these amazingly generous donors
who have helped to make every cure possible. And so
that creates and then in my case, I've got this

(01:04:43):
amazing wife who's so supportive of me. That creates this
perfect storm for really locking in, especially when I tend
to lock in on stuff anyway, really locking in and
sometimes losing perspective on time and not putting my phone
or my laptop away on the weekend or nights, because
this thing is in front of me. And so that

(01:05:03):
is something I need to keep working on.

Speaker 1 (01:05:05):
It's so interesting, because you're right, we do think about
it when we, you know, when we're sick. You know,
I've heard it said that you know, we have a
million problems, and when you're sick, you'll land one, yeah,
you know, and then and to think you're sick and
you're thinking, oh, how am I going to do this? Where?

Speaker 2 (01:05:20):
Who?

Speaker 1 (01:05:20):
Who out there is going to help me? Who out
there is going to find the cure? What experimental things
are in the works, what's happening. And it's rare that
we ever take sort of autonomy, you know, or agency
for ourselves and go, well, maybe it's up to me,
you know. And look what you're saying is like, there's
a drug three floors down that might save my life.
It's just miraculous. I just think it's incredible. And I

(01:05:42):
guess last question is, you know, for someone anybody who's
living in the middle of their own sort of medical
crisis or existential free fall, what would you maybe want
to impart to them or want them to know?

Speaker 2 (01:05:53):
I think the I think I'd probably say those three
things that I share that helped me during my really
challenging time. I think I think when you're going through
a tough time, you focus on what is that thing
that you want to work towards, not what you're facing
right now. You know, what is the thing that you're
working with, what's that vision for the future. I think
really emphasizing that second step, which is having a great

(01:06:14):
team by your side to lock arms with. You know,
it might require some tough conversations, but you know, can
you have those conversations with your family members and your
friends to build that team around you. You know, whatever
you got to do, you got to have a great team.
And then that third piece of just taking things one
step at a time and not letting the big task
overwhelm you. Let the big task guide you, let the

(01:06:36):
small tasks be what you focus on day to day,
so that way you don't get overwhelmed. And I think
that you know, this idea that a drug could be
three storyforce down from you in the hospital that could
save your life, that can be overwhelming, right. You know,
we actually don't always want that sort of agency. We
sort of like that like it's in the doctor's court
and like the doctor knows best. And I wanted that

(01:06:58):
way too. I wanted my doctor to figure like I
want to. You know, I've relied on the doctor, like
you figured out this is what you do. There's something
that gives us a little bit of peace by doing that.
But I think being aware that there are some cases
where you can't do that. Some cases you should and
like follow exactly what they're saying, but some cases it
is actually best for you to question and say is
there something else I could do? But to be careful

(01:07:22):
with when you do that, because it could be it
could come home quickly overwhelming, if everything that could be
done in your life you think could be done differently
than the way that it's being done, and that that
sort of loss of structure would be really tough.

Speaker 1 (01:07:36):
As Tom Hanks or Spielberg come to you yet to
figure your life story rights.

Speaker 2 (01:07:42):
Actually yes, so Wendy Feinerman, who did Forrest Gump with
Tom Hanks, O nail and you actually did, like you
actually perfectly nailed it. Just not Spielberg. I guess maybe
there's not enough action here for spoop work. But Wendy Feinderman,
who produced Forrest Gump and Devil was product and she's
got Everest product to coming out the spring. Her she

(01:08:05):
and a group called City Hill Arts have my life
rights to turn my Journey into a film and to
my book Chasing My Tear into a into a movie
that will hopefully share a lot of these lessons, you know,
but the things I learned on my deathbed that that
we're talking about today will be uh hopefully shared on
the big screen.

Speaker 1 (01:08:25):
That's fantastic. Well, like you said, there's so many of
the stories that it's not just the survival, but what
these people are doing now, you know, and walking down
the aisle or off to school to you know, to
change their lives and better the world. And so, you know,
what we've gained is you. We've gained you, and it's amazing. Man.

(01:08:47):
I really appreciate you taking time to talk with us,
and this has been a real privilege, and I appreciate
you joining us on Alive again.

Speaker 2 (01:08:54):
Well. So appreciate you, Dan for giving me the opportunity
to share a bit of my story and and also
for providing a platform like this for people to think
about things that maybe they wouldn't think about otherwise. I
certainly wish I hadn't, you know, nearly died five times.
I wish that my family don't have to go through.
But I learned so much and I appreciate that you've
created a platform for people like me to share these

(01:09:15):
things that we learned with others.

Speaker 1 (01:09:16):
Is there anything else that you wanted to impart.

Speaker 2 (01:09:19):
To us now. I'd love having the chance to share
about the work we're doing it every care If anyone
wants to follow along, you can find me on social
media and Every Cure everycure dot org online you can
check out Chasing My Cure sort of you know, available
everywhere books are sold and just yeah, so appreciate the
opportunity to share with you and your crew.

Speaker 1 (01:09:39):
Thank you for your time. We'll put all of this
in the in the show notes as well so people
can click and find you cool.

Speaker 2 (01:09:45):
Thank you so much, well, thanks so much, Dan, I
really appreciate this. This is awesome.

Speaker 1 (01:10:01):
To learn more about David's work accelerating cures for rare
and neglected diseases, visit every Cure at everycure dot org.
You can also explore his earlier work through the Casselman's
Disease Collaborative Network, which continues to support patients and drive
research worldwide. David's personal story and scientific journey are also
chronicled in his book Chasing My Cure, a powerful account

(01:10:22):
of what can happen when survival turns into purpose. Our
story producers are Dan Bush, Kate Sweeney, Brent die Nicholas
Dakoski and Lauren Vogelbaum. Music by Ben Lovett, additional music
by Alexander Rodriguez. Our executive producers are Matthew Frederick and

(01:10:42):
Trevor Young. Special thanks to Alexander Williams for additional production support.
Our studio engineers are Rima L. Kali and Nomes Griffin.
Our editors are Dan Bush, Gerhart Slovitchka, Brent Dye, and
Alexander Rodriguez. Mixing by Ben Lovett and Alexander Rodriguez. I'm
your host, Dan Bush. Alive Again is a production of
iHeartRadio and Psychopia Pictures. If you have a transformative near

(01:11:06):
death experience to share, we'd love to hear your story.
Please email us at Alive Again Project at gmail dot com.
That's a l I V E A g A I
N P R O j E c T at gmail
dot com.

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45 | Overtime: A Conversation With Dr. David Fajgenbaum

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.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}45 | Overtime: A Conversation With Dr. David Fajgenbaum