July 1, 2025 • 25 mins
Welcome to the PancChat Podcast! Journalist Alisyn Camerota sits down with Let’s Win CEO Cindy Price Gavin and PanCAN President and CEO Julie Fleshman in the premiere episode of PancChat. Together, they explore the evolution and impact of advocacy in the fight against pancreatic cancer and why the time was right to launch a collaborative podcast between Let’s Win and PanCAN.
From our nearly nine years as a chat on Twitter/X to increasing federal research funding and improved patient survival rates, this episode explores how advocacy has transformed the landscape. Hear how collaboration, education, and unrelenting dedication are shaping the future of how we communicate about pancreatic cancer.
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Episode Transcript
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Alisyn Camerota (00:04):
Hi everyone and welcome to the first episode of
the PancChat Podcast.This is a podcast about the challenging and awful disease
of pancreatic cancer. Thispodcast is actually a
continuation of the Twitter chaton pancreatic cancer that began
in 2016 and has now evolved intothis podcast. I'm your host,
(00:28):
Alisyn Camerota. I'm a longtimetelevision journalist.
You may recognize me from mydecade at CNN, primarily on The
Morning Show, or perhaps yourecognize me from Fox or NBC or
a variety of other places. I'vebeen asking questions for a long
time and I'm glad to be able toput my interviewing skills to
(00:50):
use on this very importantsubject. It's a subject I'm
painfully familiar with. Myincredible husband, Tim, died
nine months ago from stage IVpancreatic cancer. He was the
healthiest 56 year old anyonehad ever seen when he
(01:16):
Needless to say, I'm stillreeling from this loss. It will
be good for me and I hope forall of you as well to try to get
some answers and to learn aboutany progress being made. So let
me introduce our first guests.We have Cindy Gavin. She's the
CEO and co-founder of Let's WinPancreatic Cancer.
(01:36):
And we also have Julie Fleshman.She's the President and CEO of
Pancreatic Cancer ActionNetwork, which is also known as
PanCAN. Okay, so this firstepisode focuses on the impact of
advocacy on this deadly cancer.I wanna thank our sponsor,
Revolution Medicines, for theircontribution to the field as
well as to this conversation. Solet me introduce our first
(01:59):
guests.
We have with us, Cindy Gavin,CEO and co-founder of Let's Win
Pancreatic Cancer. We also haveJulie Fleshman, President and
CEO of Pancreatic Cancer ActionNetwork, also known as PanCAN.
Ladies, great to have you here.
Cindy Gavin (02:14):
Thank you.
Alisyn Camerota (02:15):
Okay, Cindy, let me start with you. Just
bring us up to speed. What ishistory of #PancChat?
Cindy Gavin (02:23):
Sure. So before we get started, I do want to say
thank you for agreeing to be ourhost of this important
initiative. I'm always awed bysomeone that turns such a
personal experience intosomething so meaningful for
others. So thank you for beingyou and for bringing your
expertise to our audience and toJulie who's the pioneer in the
(02:48):
pancreatic cancer advocacyspace. It is an honor to be your
partner in this importantinitiative.
So we launched a PancChat backin April of 2016 and it was a
Twitter chat and it was acollaboration between Celgene,
Let's Win, PanCAN and theLustgarten Foundation. And the
(03:09):
goal was every Tuesday eveningat 8PM, we would have a chat and
everybody would know the topicand we would come prepared and
we would discuss topics likerisks and symptoms, the latest
research, clinical trials,genetic testing, and so much
more. And over the nine years,we had 116 chats with over
(03:35):
11,000 global participants. Soit was an incredible run but in
the last year we thought aboutsort of the platform and the
transition from Twitter to X andwe've decided that it was time
for us to move on to the nextiteration which is now going to
be the PancChat podcast. Sothank you both for agreeing to
(03:58):
be part of it.
Alisyn Camerota (03:59):
Oh, well, thank you for the opportunity. I
really appreciate that and allkind words.
I've developed through this, youknow, challenge to be able to
have this conversation becauseso many people need information.
And I think that this videopodcast is the perfect evolution
for this, but you guys have beentalking about this topic for
(04:20):
such a long time. So quicklytell me the connection between
Let's Win and this.
Cindy Gavin (04:24):
Sure, Let's Win actually launched right about
the same time and we'veestablished ourselves as a go to
resource for patients andfamilies to get the best
treatment options for pancreaticcancer. So our late co founder,
Anne Glauber, when she wasdiagnosed with stage IV pancreas
(04:46):
cancer, she was told toimmediately get her affairs in
order. And she went to theinternet and there was a dearth
of information and organizationslike PanCAN and Lustgarten and
so many others were investing soheavily in research yet she saw
this unmet need where she, youknow, she as a PR professional,
(05:06):
she wanted to make sure thatpatients had access to the
latest treatment options. So shepartnered with Kerri Kaplan from
the Lustgarten Foundation, Dr.Allyson Ocean, her oncologist,
and her dear friend, WillaShalit.
And the goal was to publish newscience based content every
(05:26):
three business days. I thoughtthese ladies were crazy. I said
new science every three days. Isaid, listen, I'll help you get
your project off the ground andthen I'll figure out what I'm
gonna do. I am proud to say thatnine years later, we have
published nearly 1,000 uniquearticles on the latest science,
(05:48):
clinical trials and the voice ofthe patient.
Everything's medically vetted,everything is in English and
Spanish. And we've covered thework of over 225 medical
professionals from over 110institutions. And we share the
work of 15 advocacy groups so wecan help patients get all the
(06:12):
amazing resources that areavailable. We also have over 200
patient stories and nearly 100videos of five plus year long
term survivors. So we haveaccumulated an enormous amount
of content.
What I'll say is about a yearand a half ago, I sort of had
(06:33):
this moment where I said,well this is great, lots of
content. Keep publishing,there's so much available that
we could really get moreinformation to patients, but it
feels very overwhelming. Soabout a year and a half ago, we
sort of had a hard look at theway we get the information to
patients. So, now, when theycome to the Let's Win site,
(06:57):
instead of seeing differenttopics that they need, they
actually can see themselves. So,where they are in the journey,
whether they're recentlydiagnosed, curious about risks
and symptoms, in treatment orliving with the disease, they
see themselves in the journeyand they can find the
information that they need.
(07:17):
So we are super excited aboutall this information and
especially about all of theresearch that's happening over
the last decade.
Alisyn Camerota (07:28):
Just incredible. I mean, I think
Let's Win when my husband wasdiagnosed, it is a wonderful
resource and particularly thosepatient survival stories. They
were really helpful. I mean justso smart to put them on there.
They really give hope in apretty bleak diagnosis.
We hope so.
(07:48):
Yeah, so that ambitious ideathat you guys came up with
actually you've outdoneyourselves. So Julie, us
tell us about PanCAN. It's 25plus year history.
Julie Fleshman: Yes, thank you for doing this (08:01):
undefined
and sharing your story, empowersothers. And thank you for your
friendship and partnership andjust thrilled to be doing this
podcast with Let's Win. Twentysix years ago in 1999, my dad
was diagnosed with pancreaticcancer. He hadn't been feeling
well, stomach pain, back pain,unexplained weight loss,
(08:23):
eventually jaundice. Of course,I now know all the symptoms of
pancreatic cancer, but back thenwe didn't know that and nor did
the doctors.
And it took quite a while forhim to finally be officially
diagnosed with pancreaticcancer. And he died four months
later. He was 52 years old. AndI was devastated. Never had
heard of pancreatic cancer,didn't have cancer in our
(08:45):
family, and just couldn'tbelieve that this had happened
and that we were given nooptions and no hope.
And about that same time, thefounder of PanCAN, Pam Acosta
Marquardt, founded theorganization. She had lost her
mother to the disease, and sheand I were connected, I ended up
being hired as the firstemployee in 2000. So celebrating
(09:05):
my twenty fifth year anniversarywith the organization, and I've
just really watched thiscommunity, the pancreatic cancer
field, go from absolutelynothing back then to a vibrant,
robust community today. And backthen we knew we needed to
empower patients and ensure thatthey had information and
resources so that they couldmake informed decisions. And we
(09:28):
needed to fuel research intothis field and find early
detection strategies and newtreatments for patients. And so
that's really what we set out todo.
I'm proud that today patients,the five year survival rate is
three times more. Patients willlive three times longer to five
years than they would have 25years ago, but the five year
(09:49):
survival rate at thirteenpercent today is still obviously
completely unacceptable and wehave a lot of work to do. But I
think the difference is todaythere's a field and there are
researchers all across thiscountry you know, studying this
disease to accelerate progressin organizations like PanCan and
Let's Win that are providingresources and services to
patients.
Alisyn Camerota (10:09):
And so Julie, us some real world examples of
what you've seen in terms ofearly detection progress made
and research, et cetera?
Julie Fleshman (10:18):
Yeah, absolutely. So I think, again,
the biggest change is that thereis a field today. Back 25 years
ago, you count on one hand thenumber of researchers focused on
pancreatic cancer. Sciencefollows money, and there was no
public funding for pancreaticcancer and there was no private
funding. There were nophilanthropists investing money
in pancreatic cancer research.
(10:40):
So very few institutions had apancreatic cancer research
program. Today, I can say everymajor medical institution across
this country has a pancreaticcancer research program. And
that's because funding is nowbeing fueled into the disease.
Both federal funding, PanCAN hasadvocated to increase the
federal funding for pancreaticcancer research, and that money
(11:02):
doesn't come to PanCAN. It isfor the researchers to apply for
those dollars from $17 millionback in 1999 to over
$220 million today.
It's still underfunded for theseverity of the disease. But
again, we're creating thedollars that are allowing more
(11:22):
researchers to go into thisfield. One of the things PanCAN
did in the early days is therewere no researchers studying it.
And so we said, we're going tofund junior investigators and
encourage young people cominginto the cancer research field
to focus on pancreatic cancer.So to date, I'm really proud
that we've funded 130 juniorinvestigators at academic labs
(11:45):
all across the country.
And some of those that we funded20 years ago are now the
superstars who have builtpancreatic cancer research labs
and are now mentoring andfostering the next generation of
pancreatic cancer researchers.So all of that, the field is so
different and looks so differenttoday, and that's allowing us to
(12:05):
really make progress in thinkingabout early detection strategies
and treatment. I think one ofthe things that maybe is the
wildly different today in how wethink about how we treat
patients is 25 years ago, thiswas really thought of as a
homogeneous disease, that everysingle pancreatic cancer patient
got drug X and that was it, andthere was no difference. And we
(12:29):
know that that's not true, ofcourse, today, that every
pancreatic cancer patient, it'srecommended that they get both
genetic and biomarker testing oftheir tumors to determine if
there is a targeted drug thatwould be right for that
particular patient. And so Ithink that's a major shift.
And because of that, there haveactually been quite a few
(12:50):
targeted drugs that have beenapproved for this disease, maybe
helping a small population ofpancreatic cancer patients, one
or two percent. But imagine aswe continue to build and one to
two percent becomes 50 percent,60 percent, as we find more
targets and more therapies forpatients. So I think that's a
great example of the change inhow we even think about this
(13:13):
disease. And on the earlydetection front, there is a lot
of work being done, one to findcancer panel testing that can be
used for all cancers. Forpancreatic cancer would just be
one, you go in and get a bloodtest in your annual physical,
and it tells you that you mighthave a cancer and it could be
(13:34):
any cancer, pancreatic cancerbeing one of them.
So there's a lot of work beingdone in those kinds of panels,
none yet that have been provenacross the board, but I think
we're getting much closer. Andthen there's a lot of work being
done to better understand whatare the early symptoms of
pancreatic cancer? Who are thepatients that are most at risk
(13:55):
that we should be following? Asan example, one of the studies
that PanCAN is funding islooking at new onset diabetics.
And we actually know that newonset diabetes can be an early
symptom of pancreatic cancer.
We just don't know how todetermine which patient is in an
early symptom of pancreaticcancer and which patient is it
just normal diabetes. And so aswe finish this test or this
(14:18):
study over the next severalyears, we'll have a better
understanding at the end of itof whether that is something
that can then be embedded in thehealthcare system. You identify
someone in an electronicalmedical record that they have
one type diabetes, and then youtake these steps to determine if
it might be getting rid ofcancer. So we're getting closer.
We're not there yet.
We have a lot of work to do, butwe are much further along than I
(14:42):
think we've ever been in termsof really accelerating
participation.
Alisyn Camerota (14:46):
That's really heartening to hear. And
absolutely early detection isthe key to this because again
pancreatic cancer is sochallenging when detected late
as it so often is. And so thatleads us to education. So why is
that important for patients andfor their caregivers?
Cindy Gavin (15:02):
So I mean knowledge is power. So it was so important
with all this great work thatwas happening ten years ago to
make sure that there was a wayto get the education out to the
community, not only to patientsand caregivers but to medical
providers. I mean often thereare so many people are treated
(15:24):
in the community and the doctorsare not general oncologists so
they're not specialists in thisdisease. So it's so important
that people have access to thelatest science. So I mean, Let's
Win was built as an onlinecommunity and we are really an
online only program but thetruth is we need to get to
(15:47):
people and meet them where theyare.
So of course the internet is anincredibly powerful, social
media is really important inthis space to get to patients.
But we need to also partner withtrusted messengers to educate
them because not everybodytrusts information online. So
(16:07):
it's so important for us topartner with other advocacy
groups and other faith basedpartners, community leaders so
that we make sure that trustedmaterials get into the hands of
the right people. The one thingI mentioned to Julie when we
were driving up today was thatyou know when we launched ten
(16:28):
years ago you know the survivalrate was five percent and today
it's 13 percent.
Alisyn Camerota (16:35):
When you say five percent you mean for five
years. It was five percent andnow it's 13% percent.
Cindy Gavin (16:41):
You can't make it to five years. Yes, the 13 at
the five year survival ratetoday is 13 percent. But the one
thing that I noted was that whenwe launched, we launched at the
AACR, the American Associationof Cancer Research, they had a
special meeting for pancreaticcancer and I think it was maybe
the second meeting and they hadroughly 200 researchers in the
(17:04):
room. And now when you go tothat meeting, there are nearly a
thousand researchers. So that'sfive times the amount of
brilliant minds being focused onthis important disease.
Alisyn Camerota (17:16):
So Julie, let's talk about advocacy. So how
important is it and what does itlook like right now? I mean,
this like pounding the floors ofCongress, you know?
Julie Fleshman (17:29):
Yes. So, you know, I don't know that people
understand that the majority ofcancer research funding in this
country comes from thegovernment. The National
Institutes of Health is sort ofthe overarching agency, and then
there are about 29 agenciesunderneath the National
Institutes of Health, and theNational Cancer Institute is one
of those. And that is where themajority of cancer funding comes
(17:52):
from to medical institutions allacross the country, researchers
apply, and it's verycompetitive. So, it's actually a
low pay line that actually getfunded, but that is where the
majority of funding is comingfrom. That I would say is the
bread and butter of most labsand pancreatic cancer labs
(18:13):
included.
And then philanthropy andorganizations like PanCAN and
Let's Win help to providesupplemental funding and maybe
funding for a specific project,but the bulk of funding really
does come from the federalgovernment. So one of the unique
things about pancreatic cancer,especially 25 years ago, was we
didn't have patients to take upon the Hill and talk about this
(18:36):
disease and get mad and raisetheir signs. It really had to be
the family members that had lostsomeone. You think about breast
cancer movement, you think aboutAIDS, right? And all these angry
women who were out there saying,"We've got to do something about
this."
And so in this case, it reallyhad to be the patient, I mean,
the family members of thepatients had been impacted by
(19:00):
pancreatic cancer. So that'swhat we've done. We go up to
Capitol Hill throughout theyear, educating Congress about
pancreatic cancer, what it is,why it's not a great diagnosis,
and what needs to be done tochange that, and why federal
funding is extremely important.And so because of that, the
(19:21):
federal funding for pancreaticcancer at the National Cancer
Institute has increased by 1000%over the last two decades. So
fairly significant.
Again, science follows money.That's why there are more
researchers now studying thisdisease. But I think all of that
is in jeopardy today. The recentadministration put out their
(19:44):
suggested budget for FY26, andit recommends a 37% cut to the
National Institutes of Health.That's, say it's about
$17.5 billion And so when youthink about how that will
trickle down to then cancer andthen pancreatic cancer, it's
going to have a significantimpact.
(20:06):
And so our job right now is toeducate Congress about what the
impact that's gonna have on thelocal economies. These
institutions fuel jobs, a lot ofthe states rely on the
institutions. It's a major partof their local economy. And then
just on the health andwell-being of the people that
(20:28):
live in this country. So thereis still the opportunity for
Congress takes the president'sbudget, and then they create
their own budget.
And so there is still anopportunity to make noise and to
advocate and to ensure thatCongress understands the impact
that this could have. One of theother areas, federal funding for
(20:50):
biomedical research actuallycomes from the Department of
Defense. There is a biomedicalresearch program that funds sort
of high risk, high rewardresearch, And we were able to
advocate with some of ourchampions in Congress to create
a pancreatic cancer program, andthat was eliminated this year
because of the cuts. So this isreal and it is going to have a
(21:14):
real impact immediately on theresearchers and their labs,
labs, but ultimately onpatients. Patients today getting
on clinical trials and sort ofgroundbreaking research, and
absolutely patients in thefuture that haven't been
diagnosed yet.
So I encourage people, you cango to pancan.org and we have an
(21:34):
opportunity for you to write toyour member of Congress and tell
them why this is important.
Alisyn Camerota (21:40):
Yeah, and time is of the essence. Yeah, that's
great that you make it easy forpeople to just go to pancan.org.
Okay, so Julie, tell us aboutthe World Pancreatic Cancer
Coalition. What do they
Julie Fleshman (21:52):
Yes, yes. So this was founded in 2016 by a
group of us, Cindy, myself, andsome other cancer leaders who
thought, we're doing all thisimportant work for pancreatic
cancer patients and families.How can we come together and
ensure that we're collaboratingand that we're telling the world
that we're here as a force onbehalf of this community? So we
(22:16):
founded the World PancreaticCancer Coalition. And really, we
have sort of two priorities. Oneis to collaborate, network,
share ideas and resources sothat nobody's having to reinvent
the wheel.
That doesn't make good sense ina tough disease. And then two is
(22:40):
to raise awareness aboutpancreatic cancer globally. And
we do that through an annualcampaign that happens during
November as Pancreatic CancerAwareness Month. And in
November, we call it WorldPancreatic Cancer Day. And we
provide tools and materials forall these organizations across
the world to really raiseawareness about the disease.
(23:01):
And so today, there are over 100organizations representing 30
countries that are a part ofthis coalition. I mean, it's
actually amazing. It actuallyshows you the growth of the
field, the fact that there ismore money being infused in it.
I mean, when PanCAN started,there were no other pancreatic
cancer organizations anywhereelse in the world. So it's
(23:23):
pretty phenomenal, I think,today to see the activity.
We need research going oneverywhere, not just here in The
United States. And it'swonderful to partner with
organizations.
Alisyn Camerota (23:33):
Do want to build on that?
Cindy Gavin (23:34):
Yeah, it's I mean having worked in other cancer
spaces it's been sort of abreath of fresh air in a very
very difficult space to seepeople be so collaborative. I
mean we need to grow in the samedirection. This disease even
today with a 13 percent survivalrate five years, I mean, it's
(23:55):
like pieces of a puzzle. So weall need to sort of come
together, learn from each other,share resources, not duplicate
effort and the team has beenincredible.
So it's been an honor to partnerwith Julie on the leadership
team of the World PancreaticCancer Coalition and to see just
the global effort that supportsthis stuff.
Alisyn Camerota (24:19):
Alright, remind everyone one
Cindy Gavin (24:23):
Sure, letswinpc.org.
And pancan.org.
Alisyn Camerota (24:29):
Ladies, thank you. Thank you very much for
this conversation, for yourleadership, for all of your
investment in this field overthe years. It's really great to
have people like you working onthis. It's very hard for me. So
thank you for all of that.
And everybody, thank you fortuning in and make sure you join
us in the next episode ofPancChat where we will be
looking at the current state ofpancreatic cancer treatment and
(24:52):
share some exciting newresearch.
Hi everyone and welcome to the first episode of
the PancChat Podcast.This is a podcast about the challenging and awful disease
of pancreatic cancer. Thispodcast is actually a
continuation of the Twitter chaton pancreatic cancer that began
in 2016 and has now evolved intothis podcast. I'm your host,
(00:28):
Alisyn Camerota. I'm a longtimetelevision journalist.
You may recognize me from mydecade at CNN, primarily on The
Morning Show, or perhaps yourecognize me from Fox or NBC or
a variety of other places. I'vebeen asking questions for a long
time and I'm glad to be able toput my interviewing skills to
(00:50):
use on this very importantsubject. It's a subject I'm
painfully familiar with. Myincredible husband, Tim, died
nine months ago from stage IVpancreatic cancer. He was the
healthiest 56 year old anyonehad ever seen when he
(01:16):
Needless to say, I'm stillreeling from this loss. It will
be good for me and I hope forall of you as well to try to get
some answers and to learn aboutany progress being made. So let
me introduce our first guests.We have Cindy Gavin. She's the
CEO and co-founder of Let's WinPancreatic Cancer.
(01:36):
And we also have Julie Fleshman.She's the President and CEO of
Pancreatic Cancer ActionNetwork, which is also known as
PanCAN. Okay, so this firstepisode focuses on the impact of
advocacy on this deadly cancer.I wanna thank our sponsor,
Revolution Medicines, for theircontribution to the field as
well as to this conversation. Solet me introduce our first
(01:59):
guests.
We have with us, Cindy Gavin,CEO and co-founder of Let's Win
Pancreatic Cancer. We also haveJulie Fleshman, President and
CEO of Pancreatic Cancer ActionNetwork, also known as PanCAN.
Ladies, great to have you here.
Cindy Gavin (02:14):
Thank you.
Alisyn Camerota (02:15):
Okay, Cindy, let me start with you. Just
bring us up to speed. What ishistory of #PancChat?
Cindy Gavin (02:23):
Sure. So before we get started, I do want to say
thank you for agreeing to be ourhost of this important
initiative. I'm always awed bysomeone that turns such a
personal experience intosomething so meaningful for
others. So thank you for beingyou and for bringing your
expertise to our audience and toJulie who's the pioneer in the
(02:48):
pancreatic cancer advocacyspace. It is an honor to be your
partner in this importantinitiative.
So we launched a PancChat backin April of 2016 and it was a
Twitter chat and it was acollaboration between Celgene,
Let's Win, PanCAN and theLustgarten Foundation. And the
(03:09):
goal was every Tuesday eveningat 8PM, we would have a chat and
everybody would know the topicand we would come prepared and
we would discuss topics likerisks and symptoms, the latest
research, clinical trials,genetic testing, and so much
more. And over the nine years,we had 116 chats with over
(03:35):
11,000 global participants. Soit was an incredible run but in
the last year we thought aboutsort of the platform and the
transition from Twitter to X andwe've decided that it was time
for us to move on to the nextiteration which is now going to
be the PancChat podcast. Sothank you both for agreeing to
(03:58):
be part of it.
Alisyn Camerota (03:59):
Oh, well, thank you for the opportunity. I
really appreciate that and allkind words.
I've developed through this, youknow, challenge to be able to
have this conversation becauseso many people need information.
And I think that this videopodcast is the perfect evolution
for this, but you guys have beentalking about this topic for
(04:20):
such a long time. So quicklytell me the connection between
Let's Win and this.
Cindy Gavin (04:24):
Sure, Let's Win actually launched right about
the same time and we'veestablished ourselves as a go to
resource for patients andfamilies to get the best
treatment options for pancreaticcancer. So our late co founder,
Anne Glauber, when she wasdiagnosed with stage IV pancreas
(04:46):
cancer, she was told toimmediately get her affairs in
order. And she went to theinternet and there was a dearth
of information and organizationslike PanCAN and Lustgarten and
so many others were investing soheavily in research yet she saw
this unmet need where she, youknow, she as a PR professional,
(05:06):
she wanted to make sure thatpatients had access to the
latest treatment options. So shepartnered with Kerri Kaplan from
the Lustgarten Foundation, Dr.Allyson Ocean, her oncologist,
and her dear friend, WillaShalit.
And the goal was to publish newscience based content every
(05:26):
three business days. I thoughtthese ladies were crazy. I said
new science every three days. Isaid, listen, I'll help you get
your project off the ground andthen I'll figure out what I'm
gonna do. I am proud to say thatnine years later, we have
published nearly 1,000 uniquearticles on the latest science,
(05:48):
clinical trials and the voice ofthe patient.
Everything's medically vetted,everything is in English and
Spanish. And we've covered thework of over 225 medical
professionals from over 110institutions. And we share the
work of 15 advocacy groups so wecan help patients get all the
(06:12):
amazing resources that areavailable. We also have over 200
patient stories and nearly 100videos of five plus year long
term survivors. So we haveaccumulated an enormous amount
of content.
What I'll say is about a yearand a half ago, I sort of had
(06:33):
this moment where I said,well this is great, lots of
content. Keep publishing,there's so much available that
we could really get moreinformation to patients, but it
feels very overwhelming. Soabout a year and a half ago, we
sort of had a hard look at theway we get the information to
patients. So, now, when theycome to the Let's Win site,
(06:57):
instead of seeing differenttopics that they need, they
actually can see themselves. So,where they are in the journey,
whether they're recentlydiagnosed, curious about risks
and symptoms, in treatment orliving with the disease, they
see themselves in the journeyand they can find the
information that they need.
(07:17):
So we are super excited aboutall this information and
especially about all of theresearch that's happening over
the last decade.
Alisyn Camerota (07:28):
Just incredible. I mean, I think
Let's Win when my husband wasdiagnosed, it is a wonderful
resource and particularly thosepatient survival stories. They
were really helpful. I mean justso smart to put them on there.
They really give hope in apretty bleak diagnosis.
We hope so.
(07:48):
Yeah, so that ambitious ideathat you guys came up with
actually you've outdoneyourselves. So Julie, us
tell us about PanCAN. It's 25plus year history.
Julie Fleshman: Yes, thank you for doing this (08:01):
undefined
and sharing your story, empowersothers. And thank you for your
friendship and partnership andjust thrilled to be doing this
podcast with Let's Win. Twentysix years ago in 1999, my dad
was diagnosed with pancreaticcancer. He hadn't been feeling
well, stomach pain, back pain,unexplained weight loss,
(08:23):
eventually jaundice. Of course,I now know all the symptoms of
pancreatic cancer, but back thenwe didn't know that and nor did
the doctors.
And it took quite a while forhim to finally be officially
diagnosed with pancreaticcancer. And he died four months
later. He was 52 years old. AndI was devastated. Never had
heard of pancreatic cancer,didn't have cancer in our
(08:45):
family, and just couldn'tbelieve that this had happened
and that we were given nooptions and no hope.
And about that same time, thefounder of PanCAN, Pam Acosta
Marquardt, founded theorganization. She had lost her
mother to the disease, and sheand I were connected, I ended up
being hired as the firstemployee in 2000. So celebrating
(09:05):
my twenty fifth year anniversarywith the organization, and I've
just really watched thiscommunity, the pancreatic cancer
field, go from absolutelynothing back then to a vibrant,
robust community today. And backthen we knew we needed to
empower patients and ensure thatthey had information and
resources so that they couldmake informed decisions. And we
(09:28):
needed to fuel research intothis field and find early
detection strategies and newtreatments for patients. And so
that's really what we set out todo.
I'm proud that today patients,the five year survival rate is
three times more. Patients willlive three times longer to five
years than they would have 25years ago, but the five year
(09:49):
survival rate at thirteenpercent today is still obviously
completely unacceptable and wehave a lot of work to do. But I
think the difference is todaythere's a field and there are
researchers all across thiscountry you know, studying this
disease to accelerate progressin organizations like PanCan and
Let's Win that are providingresources and services to
patients.
Alisyn Camerota (10:09):
And so Julie, us some real world examples of
what you've seen in terms ofearly detection progress made
and research, et cetera?
Julie Fleshman (10:18):
Yeah, absolutely. So I think, again,
the biggest change is that thereis a field today. Back 25 years
ago, you count on one hand thenumber of researchers focused on
pancreatic cancer. Sciencefollows money, and there was no
public funding for pancreaticcancer and there was no private
funding. There were nophilanthropists investing money
in pancreatic cancer research.
(10:40):
So very few institutions had apancreatic cancer research
program. Today, I can say everymajor medical institution across
this country has a pancreaticcancer research program. And
that's because funding is nowbeing fueled into the disease.
Both federal funding, PanCAN hasadvocated to increase the
federal funding for pancreaticcancer research, and that money
(11:02):
doesn't come to PanCAN. It isfor the researchers to apply for
those dollars from $17 millionback in 1999 to over
$220 million today.
It's still underfunded for theseverity of the disease. But
again, we're creating thedollars that are allowing more
(11:22):
researchers to go into thisfield. One of the things PanCAN
did in the early days is therewere no researchers studying it.
And so we said, we're going tofund junior investigators and
encourage young people cominginto the cancer research field
to focus on pancreatic cancer.So to date, I'm really proud
that we've funded 130 juniorinvestigators at academic labs
(11:45):
all across the country.
And some of those that we funded20 years ago are now the
superstars who have builtpancreatic cancer research labs
and are now mentoring andfostering the next generation of
pancreatic cancer researchers.So all of that, the field is so
different and looks so differenttoday, and that's allowing us to
(12:05):
really make progress in thinkingabout early detection strategies
and treatment. I think one ofthe things that maybe is the
wildly different today in how wethink about how we treat
patients is 25 years ago, thiswas really thought of as a
homogeneous disease, that everysingle pancreatic cancer patient
got drug X and that was it, andthere was no difference. And we
(12:29):
know that that's not true, ofcourse, today, that every
pancreatic cancer patient, it'srecommended that they get both
genetic and biomarker testing oftheir tumors to determine if
there is a targeted drug thatwould be right for that
particular patient. And so Ithink that's a major shift.
And because of that, there haveactually been quite a few
(12:50):
targeted drugs that have beenapproved for this disease, maybe
helping a small population ofpancreatic cancer patients, one
or two percent. But imagine aswe continue to build and one to
two percent becomes 50 percent,60 percent, as we find more
targets and more therapies forpatients. So I think that's a
great example of the change inhow we even think about this
(13:13):
disease. And on the earlydetection front, there is a lot
of work being done, one to findcancer panel testing that can be
used for all cancers. Forpancreatic cancer would just be
one, you go in and get a bloodtest in your annual physical,
and it tells you that you mighthave a cancer and it could be
(13:34):
any cancer, pancreatic cancerbeing one of them.
So there's a lot of work beingdone in those kinds of panels,
none yet that have been provenacross the board, but I think
we're getting much closer. Andthen there's a lot of work being
done to better understand whatare the early symptoms of
pancreatic cancer? Who are thepatients that are most at risk
(13:55):
that we should be following? Asan example, one of the studies
that PanCAN is funding islooking at new onset diabetics.
And we actually know that newonset diabetes can be an early
symptom of pancreatic cancer.
We just don't know how todetermine which patient is in an
early symptom of pancreaticcancer and which patient is it
just normal diabetes. And so aswe finish this test or this
(14:18):
study over the next severalyears, we'll have a better
understanding at the end of itof whether that is something
that can then be embedded in thehealthcare system. You identify
someone in an electronicalmedical record that they have
one type diabetes, and then youtake these steps to determine if
it might be getting rid ofcancer. So we're getting closer.
We're not there yet.
We have a lot of work to do, butwe are much further along than I
(14:42):
think we've ever been in termsof really accelerating
participation.
Alisyn Camerota (14:46):
That's really heartening to hear. And
absolutely early detection isthe key to this because again
pancreatic cancer is sochallenging when detected late
as it so often is. And so thatleads us to education. So why is
that important for patients andfor their caregivers?
Cindy Gavin (15:02):
So I mean knowledge is power. So it was so important
with all this great work thatwas happening ten years ago to
make sure that there was a wayto get the education out to the
community, not only to patientsand caregivers but to medical
providers. I mean often thereare so many people are treated
(15:24):
in the community and the doctorsare not general oncologists so
they're not specialists in thisdisease. So it's so important
that people have access to thelatest science. So I mean, Let's
Win was built as an onlinecommunity and we are really an
online only program but thetruth is we need to get to
(15:47):
people and meet them where theyare.
So of course the internet is anincredibly powerful, social
media is really important inthis space to get to patients.
But we need to also partner withtrusted messengers to educate
them because not everybodytrusts information online. So
(16:07):
it's so important for us topartner with other advocacy
groups and other faith basedpartners, community leaders so
that we make sure that trustedmaterials get into the hands of
the right people. The one thingI mentioned to Julie when we
were driving up today was thatyou know when we launched ten
(16:28):
years ago you know the survivalrate was five percent and today
it's 13 percent.
Alisyn Camerota (16:35):
When you say five percent you mean for five
years. It was five percent andnow it's 13% percent.
Cindy Gavin (16:41):
You can't make it to five years. Yes, the 13 at
the five year survival ratetoday is 13 percent. But the one
thing that I noted was that whenwe launched, we launched at the
AACR, the American Associationof Cancer Research, they had a
special meeting for pancreaticcancer and I think it was maybe
the second meeting and they hadroughly 200 researchers in the
(17:04):
room. And now when you go tothat meeting, there are nearly a
thousand researchers. So that'sfive times the amount of
brilliant minds being focused onthis important disease.
Alisyn Camerota (17:16):
So Julie, let's talk about advocacy. So how
important is it and what does itlook like right now? I mean,
this like pounding the floors ofCongress, you know?
Julie Fleshman (17:29):
Yes. So, you know, I don't know that people
understand that the majority ofcancer research funding in this
country comes from thegovernment. The National
Institutes of Health is sort ofthe overarching agency, and then
there are about 29 agenciesunderneath the National
Institutes of Health, and theNational Cancer Institute is one
of those. And that is where themajority of cancer funding comes
(17:52):
from to medical institutions allacross the country, researchers
apply, and it's verycompetitive. So, it's actually a
low pay line that actually getfunded, but that is where the
majority of funding is comingfrom. That I would say is the
bread and butter of most labsand pancreatic cancer labs
(18:13):
included.
And then philanthropy andorganizations like PanCAN and
Let's Win help to providesupplemental funding and maybe
funding for a specific project,but the bulk of funding really
does come from the federalgovernment. So one of the unique
things about pancreatic cancer,especially 25 years ago, was we
didn't have patients to take upon the Hill and talk about this
(18:36):
disease and get mad and raisetheir signs. It really had to be
the family members that had lostsomeone. You think about breast
cancer movement, you think aboutAIDS, right? And all these angry
women who were out there saying,"We've got to do something about
this."
And so in this case, it reallyhad to be the patient, I mean,
the family members of thepatients had been impacted by
(19:00):
pancreatic cancer. So that'swhat we've done. We go up to
Capitol Hill throughout theyear, educating Congress about
pancreatic cancer, what it is,why it's not a great diagnosis,
and what needs to be done tochange that, and why federal
funding is extremely important.And so because of that, the
(19:21):
federal funding for pancreaticcancer at the National Cancer
Institute has increased by 1000%over the last two decades. So
fairly significant.
Again, science follows money.That's why there are more
researchers now studying thisdisease. But I think all of that
is in jeopardy today. The recentadministration put out their
(19:44):
suggested budget for FY26, andit recommends a 37% cut to the
National Institutes of Health.That's, say it's about
$17.5 billion And so when youthink about how that will
trickle down to then cancer andthen pancreatic cancer, it's
going to have a significantimpact.
(20:06):
And so our job right now is toeducate Congress about what the
impact that's gonna have on thelocal economies. These
institutions fuel jobs, a lot ofthe states rely on the
institutions. It's a major partof their local economy. And then
just on the health andwell-being of the people that
(20:28):
live in this country. So thereis still the opportunity for
Congress takes the president'sbudget, and then they create
their own budget.
And so there is still anopportunity to make noise and to
advocate and to ensure thatCongress understands the impact
that this could have. One of theother areas, federal funding for
(20:50):
biomedical research actuallycomes from the Department of
Defense. There is a biomedicalresearch program that funds sort
of high risk, high rewardresearch, And we were able to
advocate with some of ourchampions in Congress to create
a pancreatic cancer program, andthat was eliminated this year
because of the cuts. So this isreal and it is going to have a
(21:14):
real impact immediately on theresearchers and their labs,
labs, but ultimately onpatients. Patients today getting
on clinical trials and sort ofgroundbreaking research, and
absolutely patients in thefuture that haven't been
diagnosed yet.
So I encourage people, you cango to pancan.org and we have an
(21:34):
opportunity for you to write toyour member of Congress and tell
them why this is important.
Alisyn Camerota (21:40):
Yeah, and time is of the essence. Yeah, that's
great that you make it easy forpeople to just go to pancan.org.
Okay, so Julie, tell us aboutthe World Pancreatic Cancer
Coalition. What do they
Julie Fleshman (21:52):
Yes, yes. So this was founded in 2016 by a
group of us, Cindy, myself, andsome other cancer leaders who
thought, we're doing all thisimportant work for pancreatic
cancer patients and families.How can we come together and
ensure that we're collaboratingand that we're telling the world
that we're here as a force onbehalf of this community? So we
(22:16):
founded the World PancreaticCancer Coalition. And really, we
have sort of two priorities. Oneis to collaborate, network,
share ideas and resources sothat nobody's having to reinvent
the wheel.
That doesn't make good sense ina tough disease. And then two is
(22:40):
to raise awareness aboutpancreatic cancer globally. And
we do that through an annualcampaign that happens during
November as Pancreatic CancerAwareness Month. And in
November, we call it WorldPancreatic Cancer Day. And we
provide tools and materials forall these organizations across
the world to really raiseawareness about the disease.
(23:01):
And so today, there are over 100organizations representing 30
countries that are a part ofthis coalition. I mean, it's
actually amazing. It actuallyshows you the growth of the
field, the fact that there ismore money being infused in it.
I mean, when PanCAN started,there were no other pancreatic
cancer organizations anywhereelse in the world. So it's
(23:23):
pretty phenomenal, I think,today to see the activity.
We need research going oneverywhere, not just here in The
United States. And it'swonderful to partner with
organizations.
Alisyn Camerota (23:33):
Do want to build on that?
Cindy Gavin (23:34):
Yeah, it's I mean having worked in other cancer
spaces it's been sort of abreath of fresh air in a very
very difficult space to seepeople be so collaborative. I
mean we need to grow in the samedirection. This disease even
today with a 13 percent survivalrate five years, I mean, it's
(23:55):
like pieces of a puzzle. So weall need to sort of come
together, learn from each other,share resources, not duplicate
effort and the team has beenincredible.
So it's been an honor to partnerwith Julie on the leadership
team of the World PancreaticCancer Coalition and to see just
the global effort that supportsthis stuff.
Alisyn Camerota (24:19):
Alright, remind everyone one
Cindy Gavin (24:23):
Sure, letswinpc.org.
And pancan.org.
Alisyn Camerota (24:29):
Ladies, thank you. Thank you very much for
this conversation, for yourleadership, for all of your
investment in this field overthe years. It's really great to
have people like you working onthis. It's very hard for me. So
thank you for all of that.
And everybody, thank you fortuning in and make sure you join
us in the next episode ofPancChat where we will be
looking at the current state ofpancreatic cancer treatment and
(24:52):
share some exciting newresearch.
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