Passion Struck with John R. Miles - Julie Fleshman on How PanCAN Is Raising the Pancreatic Cancer Survival Rate EP 322
Episode Date: July 21, 2023In the fight against pancreatic cancer, being your own advocate is crucial. Join host John R. Miles as he interviews Julie Fleshman, CEO of the Pancreatic Cancer Action Network (PanCAN), to uncover th...e challenges, breakthroughs, and life-saving strategies in treating this deadly disease. Click here to donate to PanCAN. Want to learn the 12 philosophies that the most successful people use to create a limitless life? Pre-order John R. Miles’s new book, Passion Struck, releasing on February 6, 2024. Full show notes and resources can be found here: https://passionstruck.com/julie-fleshman-pancreatic-cancer-action-network/ Unleashing the Power of Advocacy: Proactive Steps to Raise the Pancreatic Cancer Survival Rate In this poignant episode, we have the privilege of sitting down with Julie Fleshman, the Pancreatic Cancer Action Network (PanCAN) CEO. If you or a loved one is fighting pancreatic cancer, this conversation with Julie Fleshman underlines the incredible power of advocacy and the significance it can bring to the journey. Throughout this heartfelt discussion, we address critical questions aimed at providing essential insights for those affected by pancreatic cancer. Brought to you by OneSkin. Get 15% off OneSkin with our code [PassionStruck] at #oneskinpod. Brought to you by Hello Fresh. Use code passion 50 to get 50% off plus free shipping! Brought to you by Lifeforce: Join me and thousands of others who have transformed their lives through Lifeforce's proactive and personalized approach to healthcare. Visit MyLifeforce.com today to start your membership and receive an exclusive $200 off. --► For information about advertisers and promo codes, go to: https://passionstruck.com/deals/ Like this show? Please leave us a review here -- even one sentence helps! Consider including your Twitter or Instagram handle so we can thank you personally! --► Prefer to watch this interview: https://youtu.be/QME2ITP5_9s --► Subscribe to Our YouTube Channel Here: https://youtu.be/QYehiUuX7zs Want to find your purpose in life? I provide my six simple steps to achieving it - passionstruck.com/5-simple-steps-to-find-your-passion-in-life/ Catch my interview with Marshall Goldsmith on How You Create an Earned Life: https://passionstruck.com/marshall-goldsmith-create-your-earned-life/ Watch the solo episode I did on the topic of Chronic Loneliness: https://youtu.be/aFDRk0kcM40 Want to hear my best interviews from 2023? Check out my interview with Seth Godin on the Song of Significance and my interview with Gretchen Rubin on Life in Five Senses. ===== FOLLOW ON THE SOCIALS ===== * Instagram: https://www.instagram.com/passion_struck_podcast * Facebook: https://www.facebook.com/johnrmiles.c0m Learn more about John: https://johnrmiles.com/ Passion Struck is now on the AMFM247 broadcasting network every Monday and Friday from 5–6 PM. Step 1: Go to TuneIn, Apple Music (or any other app, mobile or computer) Step 2: Search for “AMFM247” Network
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Coming up next on Passion Struck.
One of the strategies that Pancan did in the early days
when we also had less funding was funding junior investigators.
That by encouraging junior investigators to look at
and think about pancreatic cancer, ensuring
that they stay in the field and that they become
sort of our future superstars.
And that's exactly what's happened.
I mean, at this point, Pancan is funded over 130 junior investigators. The people that we funded in the early days are
definitely the superstars leading the pancreatic cancer research labs around the country.
And that strategy really did work.
Welcome to PassionStruct. Hi, I'm your host, John Armiles. And on the show, we decipher
the secrets, tips and guidance of the world's
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Our mission is to help you unlock the power of intentionality so that you can become the best
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the week with guest ranging from astronauts to authors, CEOs, creators, innovators,
scientists, military leaders, visionaries, and athletes. Now, let's go out there and become
PassionStruck. Hello everyone and welcome back to episode 322 of PassionStruck. Consistently
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In case you missed my interviews from earlier in the week, I interviewed Renown Speech
Coach, Samarro Bay, who suggests that giving yourself permission to speak is the key
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In this enlightening episode, we discuss a power of new tropics and the innovative TROKEY delivery method.
We explore the science behind methelein blue and its potential therapeutic benefits
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Now, let's talk about today's important episode.
As many of my regular listeners know, my sister is battling stage 4 pancreatic cancer,
and I try to do regular episodes to bring awareness and the latest information.
Pancreatic cancer is a disease that continues to devastate countless lives, and its impact
cannot be underestimated.
Today, we have the distinct honor of speaking with an incredible guest who has dedicated her life,
making a difference in the battle against pancreatic cancer. I am so honored to have Julie
Flushman, CEO and president of the pancreatic cancer action network, known as Pancan,
pointing us. Pancreatic cancer is one of the deadliest forms of cancer, with a five-year
survival rate of only 10%, making it the third leading cause of cancer-related deaths in the United States. This disease is often
diagnosed in its later stages, making it more difficult to treat effectively, and the number of
deaths caused by pancreatic cancer is sadly on the rise. However, pancan is working hard to change
this. The organization is dedicated to improving patient outcomes through research, advocacy, patient services, community engagement. With the goal of doubling pancreatic cancer
spiral rates by 2025, Pancan is committed to finding new and innovative ways to
that steadily disease. Today, Julie will be sharing with us the mission of Pancan,
how the organization is working to increase early detection, improve patient outcomes,
and ultimately find a cure for pancreatic cancer. She will also discuss some of the exciting new treatments and breakthroughs that are offering
hope to patients and their families.
So sit back, relax, and get ready to learn more about the fight against pancreatic cancer
with Julie Flushman.
Thank you for choosing PassionStruck and choosing me, be your host and guide on your journey
to creating an intentional life now.
Let that journey begin.
I am honored today to have Julie Flushman on Passion Struck. Welcome, Julie.
Thank you so much for having me, John. I really appreciate it.
Well, as the CEO and president of PanCan, I wanted to start out by asking you, would inspires and motivates you personally in the fight against pancreatic cancer and how did you get involved with this organization?
So it's hard to believe, but it has been 24 years now since my dad was diagnosed with pancreatic cancer in 1999.
He was 52 years old. He wasn't feeling well. The doctor told him to go home and take some thumbs,
was the initial sort of diagnosis.
And eventually, he was diagnosed with pancreatic cancer.
And he died four months later.
And I was just astonished that there was nothing that could be done,
that we were given no options, we were given no hope,
there was no place to be done, that we were given no options, we were given no hope, there was no place to determine
for information and resources.
And about that same time,
the Panchredit Cancer Action Network Pancan was founded
by three people who had also lost parents to the disease.
And I was connected to this at the time,
very small little grassroots startup organization.
And one thing led to another,
and I ended up being hired as the first employee in 2000.
And just have the privilege and honor
of being a part of this community
and the people that support our mission.
Okay, and for the listener who may not be
aware of pancreatic cancer,
can you discuss some of the different ways
that presents itself?
Sure.
So one of the things that makes pancreatic cancer
a challenging disease to treat is there
is no early detection test.
So usually by the time it's diagnosed,
it's late stage making it more difficult to treat, usually
by the time it's diagnosed, it's metastasized
or spread to other organs beyond the pancreas, making it hard to treat, usually by the time it's diagnosed, it's metastasized or spread to other organs beyond the pancreas,
making it hard to treat.
And the symptoms are benign.
They're things that we all experience,
sort of common things like stomach pain, back pain,
things that don't necessarily tell us,
I must go into the doctor,
and potentially this is pancreatic cancer.
The more tell-tale sign, more visible sign,
if you will, symptom is jaundice
or yellowing of the skin in the eyes.
And that's many times sort of the trigger
that the doctor then explores for their test
to make the diagnosis of pancreatic cancer.
But, and if you think about where the pancreas is located,
it's deep in your abdominal cavity.
So it's behind your stomach and front of your spine.
Once had someone tell me if you were gonna hide something,
this was a doctor, if you were gonna hide something
somewhere in your body, you would hide it in the pancreas.
So you're just gonna get this visual of this dark thing
in the middle of your body,
and you can't feel it or touch it.
It's not maybe a tumor on your breast
or something that you can feel
and know that something's wrong.
And so that along with the benign symptoms
and no early detection tests
makes this a very challenging diagnosis.
Okay, and I'm gonna get back to talking about pancreatic cancer,
but I thought it would be best first to educate
the audience on the mission and goals of the pancreatic cancer, but I thought it would be best first to educate the audience on the
mission and goals of the pancreatic cancer action network and how you guys are making a difference
in the fight against pancreatic cancer. Thanks for asking yes. So pancans vision is to create a
world in which all pancreatic cancer patients will thrive And we come to work every single day with that vision in mind.
And we achieve that really through a comprehensive approach.
We fund research through a variety of different ways,
focusing on all areas of research,
including developing an early detection strategy
and accelerating new treatments for patients.
We also have an amazing patient services program
for patients and families that are currently
dealing with the disease and looking for information
and resources and the goal is that we provide information
so patients and families can make informed decisions.
We also have an amazing network of volunteers
around the country that are helping us to educate
the public about pancreatic cancer and raise awareness and of course funds. And we also do advocacy
work in Washington DC to put a spotlight on this disease and increase the
federal resources that are available for pancreatic cancer research. So our goal
is to change outcomes for patients and be a resource and tool for people that
are battling this disease today.
Well, as you mentioned, the organization started in 1999 and I understand
that you were the first employee and under your leadership, the organization is now grown to a staff of over 150 and a budget of over 40 million if I got the numbers correct.
I was hoping you could share with us some of your
most memorable stories or experiences that highlight the impact of PanCans work.
Yeah, there's so many amazing stories of meeting people out in communities across the country,
whether that's a family member or a patient survivor who's currently battling this disease and
some of the memories
that stick out in those early days, people were calling the Pancan office and they wanted
to help and they wanted to fundraise and we were busy putting a sort of structure and process
around how people could easily do that.
But I have vivid memories of flying across the country, one in particular, flying out to Rhode Island,
a woman who had just lost her husband
to pancreatic cancer, and she was putting on a tennis tournament
to raise funds for Pancan.
And the beauty of those kinds of events
is people who just truly want to help.
And they're so passionate about it,
and they're committed, And in this case,
this woman just wanted to do something in memory of her husband. And this was the way for her to be
able to carry on his legacy. And also feel like she was helping future patients. And that tennis tournament,
I think that first year raised $30,000. And those were really important resources that helped Pancan to grow.
So those are the things that sort of stand out in my mind.
We are built on amazing people who have been touched
by this disease, who just want to change outcomes
for patients and want to help people in the future.
And I think that's pretty special
that I get to spend time with those kind of people.
It's inspiring, especially in the world that we live in.
There are so many really good people out there
that want to help.
Yeah, I just wanted to highlight one of them, Jason Koon,
who's one of your board members,
and when my sister was in her initial stages of the fight,
she had gone from being diagnosed as stage one
to then being diagnosed that it had
metastasized to her liver. But when the University of Texas did their testing, it showed a difference
than what MD Anderson did. And I guess one uses an MRI and the other uses a CT. But MD Anderson
at the time wasn't going to do anything to reexamine her situation,
and Jason personally got involved in orchestrated a meeting of all the doctors in the department
to reexamine her case, and when they did, they rebiopsy her and discovered that it was in fact not
in her liver, which allowed her to get the Whipple surgery,
but I'm not sure if it wasn't for his actions
and his passion if she would have had a different outcome.
So I just wanted to recognize his efforts for that.
Yeah, absolutely.
Jason, like really all of our board members
and volunteers across the country,
I think have all been through a personal
experience with this. And our job is to encourage people to be their own best advocate, right?
When something's not right, when you're not beginning the best care, and you need to keep pushing
and pushing to get answers so that you can make the best choices for yourself.
I was hoping we could just talk about the Whipple surgery a little bit more because if a listener is
completely unaware of it, my understanding is Whipple provides the best way to
treat this if you are in an early stage and have the ability to actually go
through the Whipple procedure. Can you explain if that's accurate and what they
do in this procedure? Yeah, so people who are eligible for the Whipple procedure. Can you explain if that's accurate and what they do in this procedure?
Yep, so people who are eligible for the Whipple surgery, it does, as you said, usually mean that
they've been diagnosed at an earlier stage. It has usually not yet metastasized or spread to
other organs that still confine within the pancreas. And the doctors go in and they remove heart of your pancreas. So it's a extremely
invasive surgery. Most patients will become diabetic after the surgery. And PanChan's recommendation
is that you want to go to a high volume center where they do a high volume of Whipple procedures
annually because it is a tough and challenging procedure as well as then
the recovery from it is important and how that's handled. So those are the types of things that
if people have questions about it or how to find a high-volume center, they can call PanChan's patient
services program and talk to one of our case managers. So what are some of the main challenges that you talked about earlier in
early detection and treatment, and can you talk about some of the initiatives that Pan
can is undertaking to address these challenges?
Absolutely. So maybe just going back 20 years when we were starting, at that time there
was very little happening in the field.
There were very few federal resources being invested
in pancreatic cancer research.
There was really no philanthropy being invested
in pancreatic cancer research
and there were no organizations like Pancan.
It was a pretty bleak landscape, if you will,
from a resource perspective and an awareness perspective.
And so from the early days, Pancan's job has been to raise the awareness and the visibility
so that people see this as a challenge and a problem that we need to solve.
We need investors, we need philanthropists to get involved, whether they're donating to PanCAN
or whether they're helping to find a pancreatic cancer research lab at their local institution.
We needed the federal government to increase the resources being invested in the disease.
And so that's really about pancan set out to do in the early days is to be the catalyst
for really building the field that did not exist.
And so some of the things that we did in the early days, one of the problems is science follows money.
And there was no money in pancreatic cancer research. You could probably count on literally one hand. The number of
investigators around the country that were fully funded in pancreatic cancer research. So that was
a problem. How do we build the field? How do we bring more researchers into pancreatic focusing just on pancreatic cancer research?
And so one of the strategies that PanCAN did in the early days when we also had less funding
was funding junior investigators.
That by encouraging junior investigators to look at and think about pancreatic cancer
and then ensuring that they stay in the field and that they become our future
superstars. And that's exactly what's happened. At this point, Pancan is funded over 130
junior investigators. The people that we funded in the early days are definitely the superstars
leading the pancreatic cancer research labs around the country. And that strategy really did work.
And of course, we need to continue to do that.
We need to continue to build the field.
And at the same time, we were advocating
on Washington D.C. to increase the federal resources.
And we were starting to raise awareness around the country
to get more supporters and donors interested
in investing in our cause.
As those efforts started to take shape
and you're starting to build the platform,
you're increasing the resources,
you're getting more researchers focused in the field,
then we could start to be more focused, if you will.
Focused on what are the big challenges?
Early detection is one, accelerating new treatments
is another.
In the earlier days, we tackled those problems through research grants.
Handcanned funded research grants through a competitive RFP process where researchers would
apply for our grants and then they would be peer reviewed and we would fund the very best
scientific projects that were happening in those different
areas. And then as we continue to grow and raise more dollars and have the ability to even
have a bigger impact in the last five years or so, we've made the strategic decision to
really invest in both early detection and in accelerating new treatments. And I can talk about the big initiatives that were funding
in both of those areas.
There was nothing happening to needing to build the field
and get more focus.
And then the more you do that,
the more you're able to focus in particular areas
to really start to accelerate progress.
Yeah, I'm going to dive into those in just a few minutes.
But first I wanted to ask you about some other news
that's come out recently.
I remember when I was a senior executive at Lowe's,
all of us who were at a certain level
were required yearly to go through a full body scan.
And I remember when different people went through it,
it actually
caught some cardiovascular diseases, people on the verge of having a heart attack. If I remember
correctly, caught various forms of cancer, including one of my peers who had early stages of
pancreatic cancer. And recently in the news, Maria Manunoz has revealed that she was diagnosed with peanut, which is
known as pancreatic neuroendocrine tumor.
And Manunoz has said in her interviews and on social media that the full body MRI scans
she received led to her diagnosis.
And I was hoping you could explain how is a full body MRI different from a regular MRI? And is this something that
you were seeing as a recommendation that more people should go through?
That's a great question. So a full body MRI is more of a three-dimensional look at the body and
obviously looking at every part of the body, it's not traditionally
recommended because it is expensive and so insurance doesn't cover it necessarily
for everybody and it is not yet seen as the recommendation for pancreatic cancer
specifically. So those are the kinds of things that where PanCan needs to work with
the larger cancer or community because it's needs to work with the larger cancer community,
because it's not just for pancreatic cancer.
And what are the most effective ways that we can ensure people have access to care, have
access to the opportunities to be diagnosed with something like pancreatic cancer, but also
to do it in the most cost-effective manner so that it can be used by as many people as possible.
Okay, and one of my understandings is right now, pancreatic cancer is a third leading cause of
cancer deaths. But what I've been told by several of the experts in the field is that it is on
the verge of becoming the second leading cause of cancer deaths. And I wanted to ask, what is driving its rise?
Does anyone know?
Yeah, so the incidence for all cancers
is continuing to increase.
A lot of that is due to the aging,
the baby boomers are getting older.
So part of that's just a natural progression
as the population gets older,
they're susceptible
to more challenges like cancer. But for many cancers, while the incidents may be increasing,
the death rates are going down because we have an early detection strategy, or we've had
better treatment options, breast cancer is a great example of that. Whereas for pancreatic
cancer, the death rate continues to increase.
And so that's the movement that you see from it
becoming the third leading cause of cancer death.
To the second leading cause of cancer death,
by about 2030, Pancan actually published the paper
that showed that's what will happen
if we're not able to make some changes
in that trajectory.
And I've seen it when I started doing this work, pancreatic cancer, it was the fifth leading
cause of cancer death, then it was the fourth leading for a long time.
It's been the third leading, I don't know, for the last probably six years or so.
Partly it's because there's more people being diagnosed with it, but also partly it's
because we're not solving the problem in the same
way we've been able to solve it for other types of cancer.
Okay.
And if a person is diagnosed with pain-creatic cancer or if someone's listening and
they're loved one has recently been diagnosed, what are some of the first steps that you
recommend a person in that situation
undertake?
Yep, I absolutely recommend that somebody calls PanCans Patient Services Program.
We have trained case managers who can talk to the patient or the family member, whoever
is the one that's gathering information.
We can provide information about specialists in the disease, right, that are within the person's geographical area.
We can provide information about treatments, both the current standard of care for pancreatic cancer, as well as clinical trials. And Pancan does recommend that patients consider clinical trials at every step of their journey. And then we have information about really probably any question that a patient and family is thinking about,
whether it's about diet and nutrition or supportive care
or should my family member be concerned about this?
Because now my mom has pancreatic cancer,
those kinds of questions.
We have extensive information and resources
and our case managers are there
to provide information. We don't provide medical advice when we don't tell people what they
should do, but we provide the resources and the information so that people can make informed
decisions about their care. So I do think that's a really important step. And also it's just
helpful to know you're not alone when you're diagnosed with a disease like this, right? This is a challenging diagnosis and to know there's this whole community of people who have been through this are going through it and
Who are your champions on the sidelines saying you can do this?
We've got information. We're raising money. There's hope. I think that message is really important for newly diagnosed patients as well.
Okay, and on May 10th, the journal Nature released a groundbreaking study on a new pain
crata cancer treatment using mRNA vaccine technology. Can you tell us what the basics of this study
are? It was a small study on 16 patients in this world.
There's still a lot more study tests that need to be done.
They had a 50% response rate,
meaning half of those patients seem to do better
than what they might have done on the standard of care.
They had a reaction to it.
I think people really excited about this technology and all
this technology can be further advanced to help treat pancreatic cancer patients.
And I think most people in the pancreatic cancer space believe that it's
going to ultimately be a combination of things. New technologies like this,
potentially with traditional chemotherapies, that ultimately is what's
really going to accelerate in advance treatments for patients. And each of these pieces of the puzzle
are really important in helping us get to that goal. So we're excited to see the next phase of
this study where they'll they will do it in more patients and hope those results continue to look good.
they will do it in more patients and hope those results continue to look good.
And do you have any idea
because I understand this was done in Germany
when the different phases of this might start becoming
available for people in other parts of the world?
Yeah, so my understanding there were some patients
that memorial soundkettering, I believe,
that were a part of that initial study
and I believe memorial soundkettering of that initial study, and I believe a moral slung-cuttering,
at least rolling out a larger scale study,
and I'm assuming with other sites,
but I don't know who those sites are.
But as soon as that information is available,
our patient services program again
would be a place where people could call,
and we would have that information,
we would know where the sites are and could help a patient
understand if they would be eligible or not for that trial.
Okay, and my understanding is this was done
through immunotherapy.
And one of the things that has been difficult
on my sister's journey is coming to the realization that pancreatic cancer is the most resistant to radiation therapy.
Most of the doctors are telling us now it doesn't work.
It's extremely resistant to chemotherapy.
And once the new treatment options that they have stop working.
The last resort has typically been to go to immunotherapy and there have been very few
results from that to date.
And I was hoping you might be able to shed some insight on what research have you guys
uncovered for why pancreatic cancer specifically is so resistant to really the novel treatment options
that are prevalent in other cancers that people face. One of the things that makes pancreatic cancer
particularly difficult to treat is the tumor itself is surrounded by a dense micro-environment.
And so again, someone wants to explain that to me in more layman's turns.
And what that means is, imagine the rine on a watermelon. And you're trying to get through the
rine on the watermelon. And you can't, right? Because it's really hard and it's really thick and
it's really dense. That's what the microenvironment is like that surrounds the pancreatic cancer tumor. So one of the challenges
is the delivery of the drug or whatever the treatment is to the tumor and getting through that dense
microenvironment. So that is one of the things that has made this disease difficult to treat.
has made this disease difficult to treat.
I understand in addition to the mRNA study that we just discussed,
there are a number of new clinical trials underway,
including one that my sister was recently accepted into.
And I wanted to ask,
what do you see as the promise for the ones
that are specifically going after biomarkers like CARAS? Personalized medicine, I think, is really exciting and important for pancreatic cancer.
I can tell you pancan 10 years ago, it was not clear or understood if personalized medicine
was useful for pancreatic cancer patients. And so PanCan started a program called Know Your Tumor,
where we offered the opportunity for people who called our patient services program
to get both genetic and biomarker testing.
And biomarker testing means that you're getting information back that will tell you
if you have any specific mutations
in your tumor that would then tell you the kind of targeted treatment that you should use on that
mutation. And so one of the mutations you mentioned K-RAS. So K-RAS is mutated in 90 to 95% of patients with adenocarcinoma pancreatic cancer.
If we could figure out how to target K-RAS, there is definitely belief that will be significant
in providing an essential treatment option for patients.
However, historically, RAS, the RAS family, which K-RAS is a part of,
has been very difficult to target and treat in patients.
It has only been recently, in the last, really,
couple of years, where there started to be some progress
in particular in lung cancer, in targeting RAS.
And so those learnings are now being applied
in pancreatic cancer.
I would say the development of those studies is still in early stages,
but there is certainly a tremendous amount of hope that we can figure out how to target
K-RAS as well as quite friendly other mutations that patients have,
pancreatic cancer patients have, that will significantly help to change outcomes for patients.
Okay, and in addition to the things that we just talked about,
are there any additional breakthroughs in pancreatic cancer treatment
that have emerged recently?
So, I would say there's a lot of focus in certainly one of PanCans areas of focus is also thinking
not just about what the treatments are, but how do we test them in a faster way with fewer
patients?
How do we incentivize companies to prioritize pancreatic cancer in their drug development
pipeline?
That is one of the challenges. This is historically a tough disease.
Most phase three clinical trials have not proven to be successful.
And so, companies shy away. If they have a molecule, they could potentially work in pancreatic cancer,
lung cancer, and colon cancer, I'm making this up, they may prioritize lung and colon first and do all
of their testing and their trials in those areas and pancreatic cancer falls to the bottom of the list
because everybody knows it's hard and it's challenging and the likelihood of success is potentially
lower. So Pancan, I mentioned one of the big initiatives on the treatment side has launched a clinical trial called precision promise and it's an adaptive clinical trial platform.
And so what that means and what makes that different than a traditional clinical trial is a traditional clinical trial, you are testing the current standard of care against an investigational drug or combination. And those two are being looked
at side by side. In an adaptive clinical trial platform, you're testing the current standard of
care against multiple therapeutics simultaneously. And because of the way the statistical methodology
is done in this adaptive trial, It allows you to enroll fewer patients
in each of those investigational studies
to get to an understand of something
as working or not,
and then eventually get it approved by the FDA
for all patients.
So, one of hand-canned schools is not only do we need to
continue to fund new science and innovative areas of therapeutics,
but we need to encourage a different way, a faster way, a better way of testing these therapeutics,
right, that also incentivizes companies to develop and pancreatic cancer as their priority. So those are some of the challenges that PanCAN
is certainly working to break down into overcome.
Okay, and I know when you're fighting any chronic illness,
one of the most important things to have is the mindset
that you can defeat it.
And so mental health becomes an incredibly important aspect in your battle against whatever it is you're facing.
And I wanted to ask what recommendations do you have for people in addressing the mental health awareness month. So Pancan has been spotlighting on our website
different ways that patients can ensure that they're thinking and taking care of their mental health.
And I would recommend if people are struggling or looking for ways to be supported to call Pancan's
patient services, whether that's being connected to another survivor, right?
And just having a support system with someone else who's going through this, whether that
is finding a counselor or whatever the intervention is that's needed, handcan has different
resources and information that could help patients and families deal with that.
Because as you said, if someone struggling just to get out of bed
because they're depressed, because of this diagnosis,
it makes it very hard then to get the appropriate treatment
and really fight it.
Yeah, and another area I wanted to ask you about is diet
because I understand if you don't have the strength
through diet to fight, that's also a major issue and I was
wondering if people were interested in ways that they could adapt their diet to
the fight of pancreatic cancer. Do you have resources for that as well? We do. So
again through patient services we have hooklets and information sheets about
diet and nutrition. We have information aboutlids and information sheets about diet and nutrition.
We have information about enzymes.
That's another important way that sometimes people can overcome some of their
dietary challenges when they're diagnosed with pancreatic cancer.
So again, I would really encourage people to call
PANCAN's patient services and talk to one of our trained case managers about all of those topics.
They can also find information on our website at pancan.org, but ultimately I think actually
talking to a case manager helps to really hone in on what's the individual needs and
you need needs of that particular patient.
Yeah, I know in my sister's case, she has experimented with doing a keto diet when she was going through chemotherapy,
but throughout most of her battles, she has gone to primarily a vegan-based diet.
And it's incredible when I see her how much strength she has, almost the point that you
would have a hard time recognizing her if she was walking down the street that she wasn't 100% healthy.
So I know for her it has played a huge role in her keeping up her ability to fight this disease and carry on.
Yeah, I know that's great to hear and I think every person has individual right what works for one might not work for everybody,
but the diet definitely as you as you said, plays a really
important role in the ability to then fight this disease.
I know one of your huge aspirations is that you're committed to doubling pancreatic
cancer survival rates. And I recently read that in January, the survival rate went from
10% to 12%. And I was wanting to ask if you can talk about some of the
progress that you've made so far along this lofty goal. Absolutely. So actually this year in
January of 2023 it went from 11% to 12% and the year before in 2022 it had gone from 10% to 11%. So it's basically increased a percentage each year
over the last two years.
And that's real progress.
Well, 12% is clearly still unacceptable
and we still have a long way to go.
When I started doing this work back in 2000,
the five year survival rate was 4%.
It slowly moved up to about 6% and was 6% for a long time.
Pan can't actually set a goal back in 2011
to double the survival rate at that time.
It was 6% by 2020.
It got up to 10%.
And then in 2020, we set another goal
to basically double it again by 2030.
So what does it take to move that?
And ultimately, Pancan is not the only contributor
to moving that needle.
But we feel that it is extremely important
that we're accountable to it.
That ultimately, that's our North Star, right?
Our North Star is to change outcomes for patients, and that is a very real way that we can measure
progress.
So we hold ourselves accountable to ensuring that it is moving in the right direction.
There's lots of things I think that contribute to that.
One, when someone is diagnosed, ensuring that that person has access to an information and resources about getting
to a specialist, about getting on a clinical trial, about what the treatment options are,
all of those things.
Getting people to the right treatment for them is a critical part of this.
So the education, the information, and the resources is actually one part.
You can't just be funding
research and then the people who are being diagnosed don't know about it or don't
have access to it. And then of course we need to continue to fund research. We
need to on early detection strategy or test for this disease would be
critical in changing outcomes. There are stats that show with an early detection test.
You could move that via your survival rate significantly up to 80%. So it's pretty
significant. The role that early detection could play in a patient's pancreatic cancer journey.
But we also need treatment options. We know that patients, many times even patients that are able to have surgery have a reoccurrence.
And so when that happens, we need to be able to have different treatment options to help
those patients fight it.
So all of those things are critical.
We also believe in increasing the federal resources, right?
That the funding doesn't just have to be coming from Pancan. It needs to be coming from all the
sources that are available that are prioritizing this disease to accelerate progress. And all of those
forces working together with Pancan is the center catalyst, if you will, is what's going to move that
needle and change that five-year survival rate. Okay, thank you for answering that important question.
And one of the things I've learned in doing research on pancreatic cancers,
it unfortunately disproportionately affects certain populations, especially African Americans.
And also, there is seems to be a link with a family history of the disease.
How does panCan address these disparities
and ensure equitable access to information,
support, and care?
It's a great question and something we're very focused on
and continue to really think about how we do it better.
Quite frankly, how do we reach more people
and reach the people that are disproportionately impacted?
I can give you some examples of some things
that we've done really over the last year and a half or so
to focus on the African-American community
because as you said, African-Americans
disproportionately impacted by pancreatic cancer
compared to any other racial group.
And so we've hosted a couple of webinars
that have been targeted at the black community
with having an all African American
panel as an example and people that can tell their story to patients and families that
look the same and are experiencing the same thing.
We do more targeted outreach through our volunteer affiliates around the country, looking
at how can we reach new people in communities locally and then ensure
that everybody knows about patient services, which of course is available free
of charge to anyone that uses it. So there's a lot more that I think we hope to
continue to be able to do. Another example with our precision promise clinical
trial, as we've added more sites on to that study criteria
was what is the patient population that it has access to that institution and that became leading
criteria and selecting some of the sites and those are ways that you want to make sure that different
communities and different people have access to the care that they need.
Okay, and Julie, you talked about earlier the advocacy work that you're doing,
especially trying to get up on Capitol Hill, but also trying to get more money because, as you said,
where there is money, more research will be done. So I wanted to ask you, how can individuals
who might be listening to this and communities
get involved in advocating for increased awareness,
funding, and research for pancreatic cancer?
Yeah, great question.
It's pretty easy to do.
A pan can makes it easy to get involved
and to reach out to your member of Congress.
Ultimately, your member of Congress, wherever you live,
cares about what is important to you.
You are the voter, and they care about what's important to you.
So if a listener tells their member of Congress,
pancreatic cancer is important to me,
that this is important, that we solve this challenging problem,
their member of Congress will listen to that.
And members of Congress have power over dollars
that are appropriated to the National Cancer Institute
and to other programs that fund,
biomedical research, cancer research,
and then of course specifically pancreatic cancer.
So people go on our website at pancan.org,
go into the advocacy section, sign up to get our action alerts,
and we send an email to say, here's the letter, it's already written for you, fill in your personal story,
and then make it very easy to send a letter to your member of Congress.
And it would be great for more people to be able to do that.
We've really seen that advocacy works,
that Congress does listen when enough people are shouting
and saying, this is important.
Let's do something about this.
Okay, and then I was also hoping you could talk about
some of the key collaborations and partnerships
that you've established with other organizations,
researchers and medical professionals
to further this fight.
Yeah, it can really works from a research perspective, really works with institution and researchers all across the country.
We want to ensure that if a hospital or institution is running a clinical trial for pancreatic
cancer, that we have that information.
If there is a specialist in the disease, we want to make sure we have that information. If there is a specialist in the disease, we want to make sure we have that information
and that we're able then to provide it to patients
and families who are calling into our call center.
We, of course, fund grants to researchers
all across the country.
So we're partnering from that perspective.
We have an amazing network of advisors
on our Scientific and Medical Advisory Board,
again, from institutions all across the
country that are helping to advise us in the direction and the things that we are prioritizing and
that Pancan is doing to accelerate progress. I also believe really strongly that we need to be
working with other organizations. So Pancan collaborates with other nonprofit organizations,
focused both in pancreatic cancer,
but also in a broader cancer landscape, right?
No one group can solve all of these tough challenges alone.
And so, we have our strengths and other organizations
have their strengths and we wanna partner a great example
of that is, Pancan does not provide financial assistance to people.
However, we partner with an organization that does provide financial assistance
and are able to make that connection when that's appropriate through our
patient services program.
So those are the kinds of things we're always looking for good partners that
ultimately allows us to provide the very
best service to the patients and the families, but also advance the research in the fastest
way possible.
Okay. And then Julie, my last question would be looking towards the future. What are your
hopes and aspirations of for-pan-can and for the overall landscape of pink or at a cancer
treatment and prevention.
So our immediate 2030 goals are that we talked about increasing the five-year
survive rate to 20 percent. Once we hit that, we'll want to keep on going. To raise more money,
we need to raise more resources. Our goal by 2030 is to be an $80 million organization
resources are goal by 2030 is to be an $80 million organization and those dollars allow us to invest more in the research and the services to change
patient outcomes. And in order to do that we need to raise more awareness about
this disease, about PanCan ensure that people know about the risk factors and
the symptoms that when they don't feel well that they're paying attention to
their body and they're paying attention to their body and
they're going in to be their best advocate with their healthcare professionals.
So those are some of the immediate goals for PAN-CAN.
Raise more awareness, allows us to raise more money, allows us to invest more in research
and programs and services that are going to change outcomes for patients.
And I think for the field of large, I think it's an exciting time.
There is a tremendous amount of momentum.
There is a lot happening.
You brought up the mRNA example,
but last week alone,
there were like three different sort of breaking news stories
about research that's happening in pancreatic cancer.
That used to not be the case.
We'd wait years for something exciting to come out.
And now it's happening on a much more frequent basis. There is a lot of activity.
I think there's a lot of excitement around this is a tough one and this is a disease
that we need to really figure out how to break through. And so I think we're much closer to that
today than certainly when I started this work 20 years ago.
And I think we're going to see even faster rate of progress over the next decade than we have even
over the last 20. So it's exciting time for people to get involved and to help us make that happen.
Okay, and then lastly, I just remembered you guys also have a walk that you do every year throughout
different communities.
When does that occur?
Yes, thank you for saying that.
So we just had April 29th, 2023.
So it's just a few weeks ago.
Our purple stride walk event takes place in 60 communities across the country all in
the same day.
So this year was April 29th.
I think next year I'm hoping saying the date right is April 27th. It's a
Saturday, and in 2024, and this fall, we will start
encouraging people to create teens and to start fundraising. It
is the number one way that Pan can raises money to fund our
mission. So really important. And it's a great way for
people who are going through this or have gone through this just connect with the community and feel inspired and hopeful.
Well Julie, thank you so much for spending time with us today and talking about all these amazing things that you're doing to try to rid the world of this incredibly disastrous disease. Well, thank you, John, so much for helping us raise awareness and
thinking good thoughts for your sister. I'm so glad that she's doing well and please let us know
if there's anything else we can do to help her. Thank you so much. I was so honored to have Julie
Fleshman on the PassionStruck podcast, and I wanted to thank Julie Essin and Pancan for the
honor of having her appear on the show. Links to all things Julie and Pancan
will be in the show notes at passionstruck.com. Please use our website links if you purchase any of
the books from the guests that we feature on the show. All proceeds go to supporting the show.
Videos are on YouTube at both PassionStruck Clips and John Armiles. As I mentioned at the
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on all the other social platforms at John Armiles where I post daily. You're about to hear a preview
of the Passion Struck podcast interview I did with Amy Finkelstein, a respected professor of economics
at MIT, and the author of the brand new book We've Got You Covered, Rebooting American Health
Care, which reframes the conversation
about healthcare reform and maps a path forward
for frustrated patients, burned out healthcare professionals
and policymakers alike.
The first thing we emphasize in the book is that while
a lot of attention focuses on the people who lack insurance
at any given moment in time, the uninsured,
that is a real problem.
We are missing out by not also focusing
on the very real problems of the insured,
the risk that they may lose insurance at any moment in time,
that perversely health insurance,
which is about providing some semblance of security
and certainty and a dangerous and uncertain world,
is itself highly uncertain.
And the other big issue with most people's health insurance is that it's highly incomplete.
There are enormous gaps in coverage.
Remember that we rise by lifting others.
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