April 23, 2025 • 49 mins
This week we bring back our friend and friend of the show, Dr. Ashish S. Patel! Dr. Patel takes us on a global journey through the evolving landscape of pediatric inflammatory bowel disease treatment, revealing contrasts between approaches across continents and highlighting gaps in how new medications reach children.
While adult IBD patients have benefited from an explosion of treatment options over the last two decades, children remain limited primarily to anti-TNF biologics as their only FDA-approved options. This forces physicians to fight insurance battles for access to newer medications or enroll patients in clinical trials that come years too late. "We have to bring evaluation of these medications to pediatrics concurrently with adult populations," Dr. Patel explains, sharing how advocacy efforts aim to shift this paradigm.
The conversation takes a fascinating turn when comparing treatment philosophies worldwide. At the World Congress in Buenos Aires, nutritional therapy, probiotics, and dietary interventions dominated discussions—a striking contrast to North American conferences featuring pharmaceutical companies. This reveals how resource availability shapes medical approaches, with Latin American physicians developing expertise in nutritional interventions while North American practices focus on biologics.
Dr. Patel's most hopeful insights come from current research aiming to personalize treatment based on a patient's unique profile. Studies collecting genetic information, microbiome data, and environmental exposures may eventually allow doctors to determine the optimal intervention—whether medication, diet modification, or environmental change—for each child at diagnosis. "In the near future, at least for certain types of IBD, we're talking about something that's curative rather than just therapeutic," he shares, offering hope that we're moving beyond symptom management toward addressing root causes.
Join us for this eye-opening conversation that challenges conventional thinking about how we research, develop, and implement treatments for one of medicine's most complex childhood conditions.
Links:
- ImproveCareNow
- North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN)
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hi, I'm Alicia and I'm Robin and you're listening
to Bowel Moments, the podcastsharing real talk about the
realities of IBD Serve on therocks.
This week we talked to ourfriend and friend of the show,
dr Ashish Patel.
Dr Patel is thephysician-in-chief at Phoenix
Children's Hospital, where heleads four of their eight
(00:21):
clinical centers, includingEmergency and Diagnostic
Medicine, the Center for Cancerand Blood Disorders and the
Aerodigestive Clinic, along withsome medical subspecialties,
including the Inflammatory BowelDisease Clinic.
We talked to him all about thelatest conferences that have
been happening in pediatric IBDand everything that he's learned
in all of his travels going tothese conferences.
(00:42):
We had such a greatconversation.
I learned so much.
I know you will too.
Cheers.
Speaker 2 (00:50):
Hi everybody, Welcome to Bound Moments.
Speaker 1 (00:52):
This is Robin.
Hello everyone.
This is Alicia, and we arealways excited to be joined by
our friend, Dr Ashish Patel.
Dr Patel, welcome back to theshow, for I think this is your
fourth time.
Speaker 3 (01:04):
Third or fourth maybe , but I'm always happy to be
here.
Thank you for inviting me.
Speaker 1 (01:08):
Well, you are always invited back anytime, but we are
very excited to talk to youtoday about research, because
you have been to a couple ofconferences, you've done some
things and you have insights toshare with us.
However, we start, of course,with the very unprofessional
question of what are youdrinking?
Speaker 3 (01:22):
Oh, it looks so.
Yeah, as you remember, I'm overon the West side of the country
now, so it's only 1.30 here.
So I have my Coke Zero, mysecond or third one today.
Speaker 1 (01:33):
Robin, what you drinking.
Speaker 2 (01:36):
I have my tall glass of water, as always, but I'm
drinking coffee.
I have a lot to do today and Ihave to get through the day.
Speaker 1 (01:49):
And you know I can drink coffee all the way up
until I lay my head on thepillow.
It doesn't bother me, so I'm sojealous of that.
I am also still drinking coffee.
You know that normally this isnot a thing for me, but I just
my day got away from me.
So I'm on latte number two thatI made hours ago and it's very
cold right now.
Dr Patel, next question for youTell us what's going on in the
research landscape.
I know we wanted to start outwith kind of where things at
medication wise with for kiddosliving with inflammatory bowel
disease.
Speaker 3 (02:13):
Yeah.
So I think this year at NASPGAN, which was down in Florida, I
think you know you had thecontinued presence of all of
this sort of expanding landscapeof novel therapeutics in the
pediatric space when you've beendoing it this long.
You know, remember whenRemicade or Infliximab first
came to the market, right, andyou know I was a fellow in 2003
and we had this new medicationcome to the market and you know
(02:34):
we're like, oh, you know what,let's save it, let's use it,
what should we do with it?
And you know, fast forward now,you know, 22 years, since then,
it's really there's just been areally great focus on the
autoimmune process, theinflammatory pathways, the
(02:54):
cascade that can be hit fromdifferent areas, resulting in
the end result of uncontrolledinflammation, and so certainly
we've moved beyond.
Unfortunately, still the onlypediatric approved drugs are
your anti-TNFs, right, andthat's actually kind of sad that
you know we've now fastforwarded two decades.
We've been using a lot of thesemedications for a long time,
(03:17):
yet the only ones with sort ofpediatric approval are your
infliximab, adalimumab class ofanti-TNFs, and what we have seen
and what we saw, you know, Ithink nicely at the meeting, was
the continued emphasis frominvestigators all over the
country, some involved in someof the trials but many doing
investigator-initiated reportingon the continued sort of
(03:40):
landscape of anti-inflammatorybiologic I guess we'll still
call it a biologic class ofmedications and you know that
includes your, you know youralpha-4, beta-7 integrin
inhibitors, your IL-12, 23 class, your IL-23 class, your JAK
inhibitors, you know, moving infrom the adult space, your S1Ps,
(04:00):
and there just continues to bethis growing arsenal really of
medications that we could use ininflammatory bowel disease.
And what we're trying to reallyfocus on and learn on, and what
I saw a lot of greatpresentation on, was case series
or groups of patients that wereusing these medications in a
novel way because they're inpediatrics, not in a novel way
(04:24):
because they have adultindications.
But you know, I think it'sunfortunately a little bit of
the addressing that, one ofthose bigger issues and one that
again, I think I've been proudto be part of with NASPGAN,
where you know going to CapitolHill and advocating to our
legislators that we have tobring testing, we have to bring
(04:46):
evaluation of these medicationsto pediatrics concurrently with
adult populations, right, and Iunderstand we've always thought,
oh, pediatric patientpopulation is an at-risk
population.
You know, carve them out.
We can't test drugs on them,but our families or patients
with these chronic diseases orfamilies of patients with these
chronic diseases, are asking forit.
(05:07):
They want to be part of thatmoving the needle.
But then what happens in thecurrent state is that these
medications come out on theadult setting.
They get an adult approval andthen they sort of start
trickling down, you know, maybeto our 17-year-olds and our
16-year-olds and our15-year-olds.
Or you know we have a kid thatfailed.
You know, maybe to our 17 yearolds and our 16 year olds and
(05:28):
our 15 year olds.
Or you know we have a kid thatfailed.
You know two drugs.
He doesn't have another choicesurgery or going to a drug
that's not FDA approved inpediatrics, Right.
And so then people in usually inlarger centers, or people that
are known as thought leaders andI think you guys recently spoke
to Dr Dubinsky, right?
Did you have Dr Dubinsky on theshow?
She's one of my mentors andamazing.
But people like that use thesemedications because they
(05:49):
understand how they work.
Sometimes they were involved inthe trial, like Dr Dubinsky has
been involved in a lot of those.
But others of us, like, I'llcall Dr Dubinsky and say, hey,
here's something that I'mdealing with.
How would you think about this?
And I think we have a networkof really great thought leaders
around the country in pediatricGI, in the IBD space, connected
by NASP again, and we'll startusing these medications.
(06:11):
So then by the time a pediatrictrial rolls around which again
you just heard me say we needbut by the time it rolls around
we're already using it inpediatrics and we're
extrapolating doses and we'reextrapolating usage, of course,
being very sensitive aboutsafety and those type of things.
But then it's hard sometimes toget parents and families to sign
(06:32):
their children up for a trialwhen they say that well, I can
go and get the drug.
Or or could you advocate to myinsurance company which that's
probably a whole other show orsix, which that's probably a
whole other show or six but wespend hours sometimes trying to
get these medications approvedfor our patients.
But we are able to eventuallyif we advocate appropriately and
(06:53):
it's the right sort of cascadeof therapies.
But it just becomes very, verychallenging.
And I'll tell you now here atPhoenix Children's we're part of
several clinical trials.
We're part of severaltherapeutic trials.
We're part of severaltherapeutic trials trying to
help get pediatric labels forthese therapies but they're hard
to recruit for because you knowand patients want, parents of
(07:14):
patients want therapy.
Now, pediatrics, at least inthat sense, is different.
We never do placebo-controlledtrials, which is again often
what you're doing in adults,right?
You don't know if you'regetting drug or placebo, so we
don't do placebo-controlledtrials.
You're getting drug.
In pediatrics it's typicallylooking at dosing dosing and
then safety.
So we're looking at those twothings and I think that's where
(07:38):
the real focus has been.
So it was nice at NASA to seethat continue, and it wasn't
just in IBD, actually.
It was nice to see it in theEOE space and thinking about a
lot of the other differentdiseases that we take care of.
Speaker 1 (07:50):
Can you explain to people why a drug company
wouldn't just do a clinicaltrial with kids and adults at
the same time?
Speaker 3 (07:56):
Yeah, I think part of it has been there historically
the worry about safety, and Ithink that that was just sort of
something that was just always.
You know, you'll read thepackage insert of a lot of drugs
and you know at-riskpopulations were excluded
elderly and pediatric patients.
It's a really interestingconcept to me, right?
Because one of the things wesaid when we were on the Hill
(08:19):
and speaking and trying toadvocate for this early testing
in kids is that you know, one ofthe things that is actually
complicated in adults is all oftheir comorbid conditions, right
?
So now you got a 50-year-oldtesting this new drug on and he
may have heart disease orhypercholesterolemia or
hypertension or diabetes,whatever.
(08:39):
It is right.
And trust me, because, again Itold you, we're part of those
pediatric trials.
Now I always get safety reportsand it's like, oh, sign off on
a safety report.
The 60-year-old had emphysemaafter taking the medication.
Well, hopefully none of my kidswill have emphysema when
they're taking it.
But actually, you think aboutit, the pediatric patient
(09:01):
population as long as you haveestablished a baseline of safety
of the medication, thepediatric patient population is
probably a cleaner population totest them on.
They're not being affectedtypically by some of these other
conditions.
But I think that's been themain reason, alicia, is that it
was something they've sort ofheld on to for a long time, that
oh, if we test it on a kid andsomething goes wrong, then it's
(09:23):
going to look really bad becausewe tested it on a pediatric
patient.
Speaker 1 (09:27):
That does make sense.
I mean, nobody wants their kidsto feel like guinea pigs, but
especially as we're seeingyounger and younger patients
getting diagnosed, I mean itjust it limits your ability as a
physician so much to not have atrue arsenal that you can use
without having to fightinsurance companies every step
of the way.
One of the things that wetalked about with Dr Lee is in a
(09:50):
previous episode is the use ofcombination therapy.
I'm guessing that's probablyhappening quite a bit in the
pediatric population, justbecause you do have more limited
options.
So can you talk a little bitabout combo therapy for kids?
Speaker 3 (10:01):
Sure.
So similarly, when I firststarted doing this, the drugs
that were out there even sort ofbefore infliximab became more
readily available, was amedicine called azathioprine or
6-MP or Imuran all the same drugand then a drug called
methotrexate, which some of thelisteners may know as a
chemotherapeutic agent, and itis used as a chemotherapeutic
(10:24):
agent.
We're using it at a muchsmaller dose as an
immunomodulating agent.
Those are common drugs that weuse as oral agents.
We've seen over time thatthey're not great as monotherapy
agents and in fact have theirown set of complications,
particularly the class of drugsthat azathioprine 6-MP-imuran is
in.
(10:44):
After infliximab kind of came tothe market in the adult space,
there was actually a prettylarge fairly I would call
landmark study called SONIC thatcompared azathioprine
monotherapy, infliximabmonotherapy and azathioprine and
infliximab combo therapy, andthat study clearly showed that
(11:05):
the combo therapy was superiorto controlling disease in our
IBD patients, and so at thattime I feel like the adults
really really gravitated to that.
What had happened around thatsame time maybe a little bit
before, but kind of through thattime, I don't remember exact
(11:25):
dates but there were somepatients that were found to have
a type of lymphoma that wasthought to be associated with
the use of immunomodulating orimmunosuppressing agents and
they had a type of lymphomacalled hepatosplenic T-cell
lymphoma, which is ended upbeing a very, very serious type
(11:49):
of cancer and almost uniformlyfatal.
And the patients that developedthat lymphoma were young, were
adolescent and young malesalmost exclusively.
So the pediatric communityimmediately the pendulum swung
away from the use of combinationtherapy.
(12:12):
What was seen with the patientsthat developed hepatospinic
T-cell lymphoma is that theywere on combo therapy at some
point during their treatmentregimen, even if it overlapped
for a very short period of time.
So we as a pediatric communityreally went away from combo
therapy.
Our adult colleagues again sawthe study and saw the overall
(12:35):
rarity in their patientpopulation right, it's not,
they're actually probably nottaking care of a lot of young
adolescent males and so theyfelt more comfortable and safe
using that and they have.
And it doesn't seem like we'veseen a huge rash of these types
of cancers in the older patientpopulation.
(12:55):
In fact that has not been asignal.
So that's why it has reallybeen continued to be safely done
.
Now a couple of caveats.
Some people and in pediatrics,when we go to use combo therapy,
typically what we'll do is notuse azathioprine, which is the
one that was seen present whenthey used combo therapy in those
patients that were reportedwith T-cell lymphoma.
(13:16):
So we'll use something likemethotrexate if we want to use a
combo therapy or if we do use acombo therapy.
So I think it's something thatcontinues to be utilized.
I probably still have a handfulof patients on combo therapy,
but they would all be onmethotrexate and a biologic.
It has now become interesting,as the arsenal of therapy has
(13:38):
increased, that what about combotherapy?
Is that a word?
Biologic agents, right?
So what about if I take?
Hey, I have VitoLizumab which itworks really well, thought to
work a little slower though inmore recent studies.
You know, seen in real life,that it works faster than we
thought in the original studiesbut, say, a drug that you think
(14:00):
takes a little longer for onset,right?
So when VitoLizumab first cameout, we thought it took four to
six months to work.
And then what about stackingthat with, say, an Infliximab
that has a very rapid onset ofaction and so use it for its
rapidity of response and thenpull it off and let your
VitoLizumab be your long-termtherapy, right?
(14:21):
Or in some patients where youknow you use an oral agent like
tofacitinib, and where you havea gut-specific drug partnered
with a systemic drug likeInfliximab Again, vitolizumab is
also a gut-specific drug andpartner it, stack it with or
combo it with a systemic drug,and that's definitely has been
(14:43):
done.
We have done it very, veryrarely.
I haven't actually happened,but we've seen some very sick
kids here in our practice, wherewe have a couple that have
tried what we call combobiologic therapy, and I know,
again, large centers have donethat or have heard of that.
Not a lot of data out on it, sothat's another one that we need
to see reported more and morein the literature.
Speaker 1 (15:06):
I guess, as these newer therapies are coming out
and as we're learning more, itdoes seem that the IL-12s or the
IL-23s are performing reallywell, especially for certain
populations.
Are you able to use that as itrelates to some of your patients
, especially some of these supersick ones, like, for instance,
you have somebody withfistulizing Crohn's disease?
(15:27):
I think I've heard one of theaisles is a particularly
effective medicine for, like,that type of Crohn's disease.
Are you able to use that toyour advantage somewhat?
Speaker 3 (15:38):
Yeah, yeah, I think so.
I mean I think so.
The two medicines you knowStelara, which was the original
drug, the original IL classIL-1223, and then Skyrizzy,
which is now just a monoclonalIL-23 inhibitor whose data you
know Stolaris data was good andobviously got its FDA approval
(15:59):
for the treatment of adultinflammatory bowel disease, and
Skyrizzy data looks even better.
I think we have.
We have, but still not asfirst-line therapy in pediatrics
.
We typically still have to gothrough.
We used to talk about how wewant to get away with step
therapy or pyramid and all thisstuff where we were using
(16:21):
steroids first and then Imuransecond and then a biologic.
So now we're kind of in adifferent place of step therapy
where we're like oh, if we thinkthat Skyrizzy is better than
Remicade, then why are we usingSky Rizzi first when?
In pediatrics?
I think still because it has apediatric indication for the
(16:41):
most part, and not only becausewe have, you know, because maybe
of the pediatric indication.
I don't want to, I don't wantto overstate that, because we do
still think that the anti-TNFbiologics have great rapidity of
response, have great efficacyand overall safety when used as
a monotherapy, and so I thinkmost of us.
(17:02):
And then when you start talkingabout complicated disease, like
you mentioned, fistulizingdisease or stricturing disease,
I think again, also, we have themost data around the anti-TNFs,
but yes, we need to learn moreabout how these other advanced
biologics work, particularly inthat complicated disease course.
(17:22):
And that's hard because, thinkabout it again, when we think
about the type of diseases thatpresent to us in pediatrics, I
think still probably about 70 to80% of patients that we see
would say Crohn's disease arethe inflammatory,
non-structuring, non-penetrating, and so again, and our patient
population is a lot smaller thanthe adult population, the vast
(17:45):
majority of patients we see arethose patients.
Then maybe you have 10 or 15%that are structuring, 10 or 15%
that are fistulizing orpenetrating disease, right?
So just the number of patientsthat we still we have a chance
to gain experience on usingthese advanced therapies, I
think is still pretty limitedand I think still in the
literature and you know, atthese meetings again it's nice
(18:07):
to see but they're presented incase series or case reports.
We, for example, presented astudy that we had been working
on where we have some childrenthat had what was considered an
extra intestinal manifestation,where they had a genital
involvement of theirinflammatory bowel disease,
right.
So now we're talking about thisdisease that typically affects
(18:28):
the gut, but these patients hadinvolvement of their genital
organs, which it was, as you canimagine, it's just scary number
one but really debilitating forthese patients.
And now looking at what therapythey respond to, and again we
sort of saw that they neededmore aggressive therapy.
(18:48):
Even if it was the TNFs, it wasat the higher dose or the more
frequency to get penetration ofthe drug into some of their skin
and those organs to get aresponse.
But that was a case series oflike three patients, right, and
it's actually interesting, afterwe presented it we've had
people from around the countrysay, oh, I've had one of those,
one of those, and so now we'retrying to go back and say, hey,
(19:11):
can we actually collect a biggergroup to publish an article on
regarding that?
But I think that's going to bethe continued push in these
patient populations,particularly with the complex
forms of disease.
Speaker 1 (19:24):
Oh, those poor babies .
Oh my gosh, that sounds veryunpleasant.
That's the wrong word to evenuse for that.
Really, that soundsdebilitating.
This is going to be an off thewall question, so you don't have
to answer it, and then I'mgoing to circle back to clinical
trial.
So here's your warning.
I am so curious about when youscope somebody.
Can you tell a differencebetween a Crohn's disease or an
ulcerative colitis?
(19:44):
Like how, what is?
What is the difference in howthey look?
Speaker 3 (19:47):
Yeah, yeah.
So sometimes you can.
There are some gross findings,you're right.
In the end we really like tohang our hat on microscopic
histopathological results, right.
So looking for chronic activeinflammation in all of the
regions, right.
But there are some gross, Ithink everyone would understand.
(20:09):
But visual differences.
And so ulcerative colitis tendsto be what we call a continuous
disease.
That should start in yourrectum, so right.
When you put the scope ininflammation that then extends
proximally, right.
So the three types ofulcerative colitis are really oh
, I have proctitis, or I haveleft-sided disease, or I have
(20:30):
pancolitis, right.
So typically inflammation in acontinuous pattern that starts
in the rectum and extendsproximally.
With ulcerative colitis youtend to have more bleeding.
The tissue is very sensitive,the scope touches it and it
bleeds those types of things.
And sometimes you can seepseudopolyps in ulcerative
colitis because the inflammationhas been going off for so long.
Not real cancerous polyps, butthen there's sometimes a lot of
(20:53):
them, but they're aninflammatory response.
In Crohn's disease, what's beendescribed visually is that it
can be skipped areas, right.
So you put the scope in rectum,looks clean.
Sometimes you have this conceptof rectal sparing doesn't
affect the rectum but then youget up and there's an area that
(21:13):
looks inflamed, go a littlefarther.
Oh, it looks good again.
Then you go a little further.
So that's typically classicallybeen referred to as skip
lesions, areas here and there,and then really probably the one
big sort of gross or visualfinding is location or real
estate right.
So with ulcerative colitis theinflammation should be limited
(21:33):
to the colon.
If you then get into the smallintestine, the ileum, and you
see inflammation there,ulceration, exudate,
inflammatory polyps, then yourmind's right is turned on to it
being Crohn's.
That's why also because it's soimportant in terms of how we
think about therapy inpediatrics typically these
patients when they're gettingIBD evaluations, they will get
(21:56):
an upper endoscopy and acolonoscopy simultaneously.
You know, one of the things wedid again 10 or 15 years ago we
started Improved Care Now wasthinking about a diagnostic
bundle like how do weappropriately evaluate these
kids at their diagnosis?
And that diagnostic bundle nowsays that patients being
evaluated for IBD should get anupper endoscopy, a colonoscopy
(22:19):
and some formal small bowelimaging.
So even where I can't get towith a scope, they should have a
upper GI small bowelfollow-through.
We use MREs a lot because it'sno radiation MRI magnet.
Some people do what's calledsmall bowel capsule, but that's
the diagnostic bundle to makesure they don't have disease
hiding in other places.
(22:39):
So there is a way to tell that,but you want to always match
that to then what the biopsyfindings are.
Speaker 1 (22:46):
Got it.
Thank you for that.
Okay, circling back to clinicaltrials, so one of the things
you said is that there islimited engagement in clinical
trials because a lot of peoplecan still get access to the
drugs as long as you fight withtheir insurance companies enough
, I guess.
My question then is what's theimpetus for somebody to
participate in a clinical trial?
Is it like because youtypically get free drug when
(23:08):
you're on a clinical trial?
Is that part of it?
And then also, how do you layerin the sort of health equity
component of that Like is itthat there's, like it then
becomes, this whole populationof people that just don't are
underinsured or uninsured or,frankly, poor?
Like what is it that?
How does that sort of layer into what we're looking at for
clinical trials?
Speaker 3 (23:30):
Yeah, a hundred percent.
You know, we certainly worryabout that in the pediatric
space, right, because one of thethings is that we're trying to
provide through a trial, oftenin the adult population, you're
providing access to a therapythat's not otherwise available,
right, so that's very clear.
And you participate in research.
Again, I've done research wherethey're like you know, why are
you giving them a $10 card?
You know it can't be coercive,and I was like a $10 gift card
(23:52):
is coercive.
But so, also, right, we don'tpay money to do this because,
again, we can't, we don't wantto jade that population by
making it some sort of afinancial windfall for the
parent or for the patient adultor pediatric, right, pediatric,
obviously, they're not gettingthe money the parents own.
So we have sort of tried to tryto be careful in terms of how
(24:14):
we phrase that when we approachfamilies in terms of access.
I think still, on the whole,most of the families that do
sign up for it, they like theidea, as do we, that there's
actually a little bit moreoversight almost when you're in
a clinical trial, both in termsof sort of laboratory workup,
(24:34):
those type of things, afrequency of appointments.
Sometimes there's saying, okay,we'll have another endoscopy
that's paid for by the study ata year.
So I think in some sense someof the families look at it as an
opportunity to have a littlebit of extra oversight when
they're using a new medicationthat's appreciated.
The flip side of that is wait.
I got to come for 12appointments in the next 12
weeks because a new medicationthat's appreciated.
(24:55):
The flip side of that is wait.
I got to come for 12appointments in the next 12
weeks because you know thatsometimes you know that's I'm
over-exaggerating, you know, butit is definitely more
appointments than you would come, and so it is sometimes a
balance of that and I thinkthat's where sometimes families
look at it, sometimes families Iknow I hear them talk out loud
(25:17):
and they do.
I think financial peace is aconsideration of what can they
feel like they can safely affordfor their child.
But we do try to make it veryclear that if you don't do the
trial, we're going to proceed inthe same way.
We did right and whether you'rein the trial or not, your care
is the same.
And if this medication doesn'twork, whether you're on the
trial or not, your care is thesame.
And if this medication doesn'twork, whether you're on the
(25:39):
trial or not, I'm going to holdit to the same fire.
You will come off the trial ifit's not working.
We'll come off the drug if it'snot working and we're not in a
trial.
Speaker 1 (25:47):
Okay, thank you for that.
Moving on, the other activitythat you did not too long ago
was to go participate in theworld Congress of pediatric IBD
in beautiful Buenos Aires.
So please do tell us about thattrip and all the things you
learned there.
Speaker 3 (26:02):
That it was absolutely amazing.
So just maybe a little bit ofcontext for some of the
listeners.
Every year, of course, we haveNASP again, our annual pediatric
GI meeting.
We learned a bunch of stuff,actually, we learned actually
going on the hill at thepediatric GI, which I would
encourage everyone to go into.
It's a great profession, butit's one of the pediatric
(26:24):
subspecialties that actuallyholds their own conference, like
pulmonology doesn't have theirown pulmonology conference every
year, they just go to theAmerican Academy of Pediatrics
conference or the largerpediatric conference, but Peds
GI has their own conference,which is NASP.
Again, for those that live herein North America, there's
equivalent, I think, foursocieties around the world the
(26:45):
European Society, the LASP,again the South American Society
and then the Asian Society, andI'm blanking on the acronym for
them right now.
So every year, nasp can hostour annual meeting and then
every four years, these foursocieties come together to hold
what's called the World Congressof Pediatric Gastroenterology,
(27:06):
and four years ago everyoneremember what that was COVID.
It was supposed to be in 2020,and it was supposed to be hosted
by the European Society inCopenhagen.
It was on my calendar to go andit got mostly moved to virtual
and so it was.
Unfortunately, it didn't happenthis year actually not this
year, it's 2025,.
2024 was the four-year mark andit was hosted by the Latin
(27:29):
American Society in beautifulBuenos Aires, argentina.
So I had the opportunity to godown.
It actually was really fun.
It was the week afterThanksgiving my kids are big
enough now and so we took themthe week before over
Thanksgiving and we went down toBuenos Aires and we went down
to Calafate, which is near thePrieto Moreno Glacier, fourth
(27:51):
largest ice field in the worldand, as you know, sadly, like
all of our ice fields, shrinkingbut just absolutely beautiful
One of the few ice field orglacier that you can walk onto.
So you take a trek and then youjust essentially walk onto the
glacier.
We had to put our crampons onand got to sort of walk around
(28:12):
the glacier.
It was a lot of fun.
And, speaking of a good drink,at the end of hiking around the
glacier, the guy goes and chipsglacial ice and pours you a
whiskey on glacial ice, whichwas really cool.
It was really bad whiskey, butthe ice was the best and you
(28:33):
know it's.
It comes off this glacier,right, so it's so dense.
The guy says that that ice willstay not fully melted for like
72 hours, because it's so dense,right?
The ice that's made in yourrefrigerator has a bunch of air
in it, so it melts away.
Because it's so dense, right?
The ice that's made in yourrefrigerator has a bunch of air
in it, so it melts away.
That was really, really cool.
We then went further down toCheltenham, which is near, is
(28:53):
not near, is at the base ofPatagonia.
So we were at the base of those, the famous mountains that
everyone knows by visibilitybecause everyone's seen someone
wear a Patagonia fleece orsweatshirt.
But those mountains were rightin front of us in real life and
it was incredible.
So we did a hiking expeditionone day and we did a horse
riding one day and we did a.
My kids have gotten intoclimbing and so we actually did
(29:16):
a climbing thing with a climberhe, he but he went up and put a
big hook in and then he let thekids climb up and belay down.
It was fun, just beautiful,beautiful country.
Their natural resources arereally, really protected.
They don't drill or really doany exposure of the natural
resources controlled by thegovernment.
There's probably some good andbad around that, but it's a
(29:37):
beautiful, beautiful country andthen the family came home and
then I stayed for the WorldCongress, which was back in
Buenos Aires, and it was reallyreally great experience.
The last time I was in SouthAmerica for a World Congress was
for the one hosted in IguazuFalls in Brazil.
That was in 2008.
And I remember from then too,but this time again it really
(29:59):
reminded me about some of thedifferences in approaches to
disease states.
I'll tell you in the conventionhall there, you know again a
lot of all the booths set up,but they were all nutrition
companies all formula,supplemental nutrition, advanced
nutrition companies.
There was no biologics, therewas no drug companies.
Actually, funny enough, theonly other two stands.
(30:22):
Well, there were some probioticstands, and then the other two
stands were a eat more meatcarne Argentina stand and a wine
wholesaler that they had set up, I think, for people that were
attending from around the worldthat they could ship wine home.
But, it was really great andeven the programs themselves.
Like you, would go to session.
There would be an IBD sessionand there would be whole
(30:44):
sessions focused on nutritionaltherapy and changing the
microbiome and using probioticsand thinking about really, as
you can imagine, right likethese countries, what they have
access to.
Right, they don't have accessnecessarily to biologic du jour,
the newest biologic, or even,quite frankly, probably
(31:05):
infliximab or adalimumab veryeasily right Now.
Maybe this biosimilar spacewill change some of that,
because some of thesebiosimilars have come from some
of these other countries.
But it was really really great.
I attended a session that youknow talked about.
You know pros and cons of acarnivorous diet and pros and
cons of a vegetarian diet orvegetarian versus vegan
(31:25):
differences, and people aremeaningfully looking at not only
is it like, oh, you know it'shealthier, but how is it
changing your microbiome, how isit changing disease, history
and course and process and allof those things.
So it was great.
It was a fun meeting to attendand it's always nice.
We love traveling and so it'salways great to be in, see the
(31:48):
different culture, both cultureyou know restaurants and
nightlife and the history inthis place.
You know Buenos Aires wasoriginally largely settled by
well, obviously, nativeArgentinians, and then a lot of
Spanish influence and then a lotof the city burnt down at one
(32:08):
period of time and then theItalians came back and built it.
The architecture is justbeautiful.
It is a really, really prettycity.
People always talk about itbeing a very European city in
South America and you coulddefinitely see that in the
architecture and it was a lot offun.
It's a long flight, but nothorrible.
You know, you always think inyour mind that South America is
just straight down, but you knowit's, the time difference was
(32:31):
only four hours, but it's a onehour ahead of East Coast.
So it's, you know, over.
So we flew from here to Houstona couple hours, not bad, and
then 10 hours from Houston toBuenos Aires.
A little bit of a long flight,but not a big time change, but
it was great.
Looking forward to the next,they announced World Congress
2028.
(32:51):
Maybe we should do the podcastfrom location.
Speaker 2 (32:57):
I agree, yes.
Speaker 3 (33:00):
Let's get some support for that, so it's going
to be hosted.
Speaker 1 (33:04):
Lake Farms.
We're talking to you.
Speaker 3 (33:07):
Hosted by that Asian Pacific Island group and I'm
sorry I'm blanking on the name.
I should know it if we'reasking for money, but it's being
held on the Gold Coast inAustralia, so not in Sydney.
But what's the town just upfrom Sydney?
Oh, I'm blanking on it.
It's not Melbourne, no,brisbane.
(33:29):
Brisbane, that's it.
Yeah, yeah, so it's going to bein Australia is World Congress
2028.
That's awesome.
Speaker 1 (33:35):
I mean 100%.
I think we should do it becausenow you know, we just
interviewed Tish, who is inMelbourne, and so I think you
know, and we just finishedtalking to the, you know, the
CEO of Crohn's and ColitisFoundation of New Zealand, so we
have to go visit, right?
Speaker 3 (33:50):
That's right.
Speaker 2 (33:52):
That's right.
Okay, I have a question aboutthese sessions at the World
Congress.
Do they do more diet-relatedresearch in other countries
because of access, and if theydo, why aren't we referencing
that here?
Speaker 3 (34:06):
Yeah, I think it has been done.
It just hasn't been publishedor talked about or discussed,
but now it is.
So now we are getting some oftheir experience and data, even
like we did with the Europeanstudies around exclusive enteral
nutrition, partial enteralnutrition.
You know, we drew a lot of thatwork from those places, but I
(34:28):
think just historically, youknow, we haven't not a lot has
come out from some of thosesites and they may have been
sort of using it and that's justtheir standard of care.
You know, when we first weretrying to figure out exclusive
enteral nutrition, we're likehow is anyone doing this in
Europe?
Europe says they're doing thiswith all the patients.
Well, that's the therapy.
(34:52):
They don't have another choice.
It's not like you're like oh,here you know, go on formula for
12 weeks or let me give youRemicade.
Your choice is to do that.
Now, you know, again, Europehas changed as well, but I think
in some of these places, yeah,that, due to access, this is
what they do.
Speaker 1 (35:03):
So of the diets they were discussing, was there any
that seemed more effective?
Or did it depend on the country?
Because I mean, I know fromwhat we've heard it sounds like
places that start to adopt amore westernized diet do tend to
see an increase in inflammatorybowel disease.
So was there a difference insort of the type of diet and
(35:25):
then also where the diet wasbeing done Like?
Is it like the pescatarian dietin Japan worked really, really
well?
But it might be because it'sJapan.
Speaker 3 (35:34):
Yeah, yeah, no, I think I think there is an
environmental role, mostcertainly Right, and you know,
we've seen it.
You know I I try to keep alittle bit of a pulse on India.
You know where I'm from, wheremy family's from, and you're
exactly right, you know, you sawthat not only was it, one of
the things that is happening isthe movement from a rural
(35:59):
society to an urban society.
That shift right is ageographical or physical shift.
It's also a shift in where yourfood comes from.
As you get more and moreurbanized also, you have to make
so much food for a populationin a limited amount of place.
But the environmental factorschange too.
You're not living on the farmanymore, you're not being
(36:22):
exposed to some of the normalbugs and dirt things that you
wore, and so a lot of people saythat some of the changes we're
seeing in some of thesedeveloping countries is where
the US was 50 years ago or 60years ago and where we've seen
again, if we look backhistorically, this continued
rise of autoimmune conditions,including inflammatory bowel
(36:44):
disease.
I think this, what you'resaying, is what makes diet
research so hard, is thatthere's so many variables in it,
right?
When I first started at UTSouthwestern.
I had this idea and it justbecame so like log jammed with
variables.
But I was like you know.
I would love to see like if youcould take migratory
populations, immigrants landingin this country that don't have
(37:06):
a strong history of inflammatorybowel disease in the country
they come from, and thenactually following them now
again, also has to be.
It can't be a one month study,right?
You're probably talking aboutchanges that occur over five, 10
, 15, 20 years, as thatimmigrant acclimates to a
(37:26):
society, to living here orliving wherever they move, and
maybe initially still eats allof their own, all their own
traditional food, though it'snow the source is different,
right, but they may be stilleating the food.
Now they started eatingMcDonald's or they started
eating Chipotle or whatever.
They start now integrating infast food or processed foods and
but they foods, but their dietis still mixed.
(37:48):
Now they may be an immigrantthat comes from a vegetarian
country, like India for the mostpart, and then moves to a place
where now introduced.
So again, the point is, thevariables are so the amount is
so many, because we know, evenwhen we look at microbiome
studies in our own country, inthe United States, we did that
(38:09):
in one of our pediatricconsortiums one time, and you
could see that patients with IBDin the Northeast had a
different microbiome profilethan patients in the Southwest
or on the West Coast and Midwest.
And so we're like, oh well, wehad hoped to do this to figure
out what microbiome was bad,what was causing IBD, and then
what we just found out is, ohcrap, literally it's being
(38:32):
caused by a bunch of differentmicrobiomes in different
varieties that impact peopledifferently.
That has been.
I think the real struggle withdoing good dietary nutritional
therapy research is that thereare just so many variables that
play a role.
Speaker 1 (38:47):
Is there anything common?
Is it like this kerogen orwhatever they are?
Is this preservative, somethingthat is universally known like
red dye, number four, orwhatever it is?
Has there been anything thatwe've been like?
Okay, this is the common threadthat nobody should have Not
really Not that we've seen.
Speaker 3 (39:05):
We've even looked back at, like you know, going
back to, you know, even, sort ofpre-diet, like what was your
route of birth?
Right, vaginal versus c-section, because that's the first
inoculation of bacteria in yourbody.
How were you fed, you know?
Is there a difference,breastfed babies versus formula
fed babies?
Again, because we know, atleast we think, that a large
(39:29):
amount of your microbiome isestablished in the first few
years of life and you're notchanging it a whole lot, though
you might.
If you move, your diet changessignificantly.
But, there hasn't been a yeahnot really what you know, like
what we I think are looking foris a smoking gun, right, like
hey, this causing a problem in avast majority of people?
There was a time when somethingcalled mycobacterium avium
(39:53):
paratuberculosis was talked alot about.
It causes a similar type,phenotype of disease in cows and
we're thinking, well, are wepassing that from milk to humans
?
And it's causing disease, asimilar disease now called
Crohn's disease in humans.
But you know, they againsimilarly, just as they got
(40:15):
bigger populations and looked atit, they just weren't able to
identify it in a vast amount ofthose patients.
So I think that's probably ourcontinuous biggest struggle as
research.
Right, therapeutics is reallygreat because it's improving the
quality of life of our patients.
It's changing the naturalhistory of disease, decreasing
the amount of hospitalization,surgeries and risk of cancer in
(40:37):
those patients.
But it's not, you know, wealways talk about like how to.
In my lifetime I still hope thatthe research that's being
looked at in terms of etiologiesstarts being able to pull out
buckets or buckets of patientswith a particular type of
etiology that then could becured.
Because when this MAPconversation was going on, one
(40:58):
of the theories was like, well,just put them on tuberculosis
therapy, because atuberculosis-like drug put them
on tuberculosis therapy for ninemonths.
See if it cures their Crohn'sdisease.
Well, first that's a pain, it'sa lot of medication and it
didn't actually cure theirCrohn's disease.
But like that right.
So can we actually figure out?
Are there particular types ofCrohn's disease that might be
(41:20):
amenable to curative therapyrather than just therapeutic
therapy?
Speaker 1 (41:26):
Isn't that what you were doing with the risk
stratification study?
Speaker 3 (41:29):
Yep, yep.
Similar right Is that we werelooking at trying to figure out
if there were features of theirdisease that we could see at
time point zero, that couldpredict where they're going to
be and use that data todetermine how aggressive we need
to be in their therapy, right?
Similarly, now CAMEO, that'sanother sort of study where
(41:51):
we're taking all new diagnoseswith Crohn's disease.
We're actually trying tocapture patients at diagnosis.
We're actually recruitingpatients at high risk of
suspicion Crohn's disease beforetheir scope and then capturing
material at their scope and thenif they have Crohn's disease,
then they go into the study andthey're followed forward.
(42:12):
And then how biologics changethe natural history of disease.
So that's actually a large NIHfunded study that's going on
right now.
That's multi-center around thecountry that hopefully will try
to shed some light on how do we,can we understand how patients
not only appear at the beginning, but how do things change and
(42:32):
when do you enter with abiologic?
Does that affect how it changesthings and those types of
things?
Speaker 2 (42:38):
What do those kinds of studies, if anything, tell
you about the adult population,since you're following pediatric
patients from the point ofdiagnosis?
Speaker 3 (42:47):
Yeah, it's been something that's hard right,
Because you can imagine likethey turn 18, 19, 20, and then
they go to an adult doctor andthen we don't hear about them
again usually right.
But I'll get sometimes a weddingannouncement or a graduation
announcement, but not howthey're doing 20 years from now.
And so some of the registriesthere's a few registries now
(43:08):
that are aimed at more trying tocapture data and it was
something like when the FDAapproved some of these
medications.
They told the companies youhave to make a 20-year registry.
We don't want to just know whatthe risks are in a year.
You need to follow any patient,as many patients as you can
over a 20-year period.
Right, and we're actually stillpart of both of those, two of
(43:29):
those registries where we enrollpatients.
But I think it is hard for usstill to have that complete
visibility of what happens onthe adult side when they get
into that adult practice.
And you know, usually we don'thear if there's a complication
or a problem, unless they wantto know something very specific
about their therapy when theywere a pediatric patient.
Speaker 2 (43:49):
Right.
I think it would be fascinatingto be able to know that.
Speaker 3 (43:53):
Yeah.
Speaker 1 (43:53):
Well, and I'm curious about the genetic component of
this.
Is that something you're alsolooking at Like?
Are you doing genetic testingfor all these kids as well and
trying to see what is maybe acommon thread as well?
Speaker 3 (44:05):
Yeah.
So in some of these studies,like I mean, I think in some of
our these new longitudinalstudies, we are collecting blood
work, looking at some of thosethings.
It's not stuff that we have theknowledge to share back with
families real time, but the hopeis that when we put the data
together as a whole, then we canlook back and say two things
right, are there geneticfeatures that tell you how the
(44:25):
disease is going to behave?
Is there genetic features thattell you how you're going to
respond to medication?
Right, because that's the otherthing.
Right, it's like we, you know,using this step therapy, I'd
love to be able to draw bloodwork on a new diagnosis and tell
you what the best medicine foryou is today.
Or diet right, what's the bestdiet for you today?
Like it doesn't have to be justmedicine, right?
(44:49):
We don't want to say just onmedicine, like what, what are
the things that could changeyour natural history of disease?
Speaker 1 (44:53):
Or even if there's an environmental component you
could change too.
You know, like, are you livingin a in the mountains where
there's not enough oxygen, orare you living in Houston where
there's a bunch of toxic mold?
You know, whatever it is likesorry, houston, but you know
what I mean.
Like is, is there other othercomponents to this as well?
Cool, exciting times, excitingtimes, and I a hundred percent
love your idea of us going toAustralia and doing, you know,
(45:17):
some live podcasting there.
And it is the Asian pan Pacificsociety for pediatric
gastroenterology, hepatology andnutrition.
So apps, apps, gun.
Speaker 3 (45:27):
Maybe.
How do?
Speaker 2 (45:29):
I get an app scan.
Speaker 3 (45:31):
A lot of a lot of a lot of consonants without many
vowels.
Speaker 1 (45:39):
No, there's just two A's.
That's it.
It starts with an A and almostends with an A.
So yeah, a P P S P G H A N.
How would you say that?
Speaker 2 (45:49):
AppScan that's how I would say it AppScan.
Speaker 3 (45:51):
All right, that's what we'll go with.
Speaker 1 (45:53):
Nobody put me in charge of naming things.
It's probably wise.
Actually, that's not true.
I named this podcast, didn't I?
You did.
Speaker 3 (46:29):
Maybe they should put me in charge.
Okay, last question for you, drPatel.
Tell me something that youfound super hopeful about the
recent learning experiences thatwe're living in.
The current research effort,interest, energy that's being
put into inflammatory boweldisease obviously is greater
than any time in history.
We just know more.
We're still learning a lot.
It's sometimes humbling becauseyou know, you go to medical
school you think, oh well, Iknow everything I need to know.
(46:50):
I went to medical school andwe're constantly learning about
the human body and how itchanges and how it responds and
pathways, and so that's actuallyreally cool to me.
That's something I tell medicalstudents and residents and
fellows that we interact with.
Still, is that always challengethe norm learn more.
If it doesn't fit, then itdoesn't fit, rethink it.
(47:12):
But for parents, I think myencouragement is that we are
living in a time where therecontinues to be a really a
strong emphasis on understandingpathophysiology, disease
history, natural history, riskand then therapies.
And I think what I continue toleave these meetings that I go
to is with this renewed hopethat there is really a near
(47:34):
future where you know at leasttypes of this disease are going
to be, where we're talking aboutsomething that's curative
rather than just therapeuticright.
It cures your disease, not justa band-aid, and I think that's
encouraging for allid and Ithink that's encouraging for all
of us.
I think that's encouraging forour patients to hear.
Now, I'm getting old, sosometimes when I tell my
patients I say well, in yourlifetime, I think or I hope that
(47:57):
this is happening.
I think maybe when I was firststarting I may have included
myself in that conversation, butI really do think that what you
hear and just the incrediblework that's been being done.
We had a really neat keynotepresentation recently, john
Bernard, that just talked aboutjust how, even as you think
about single therapies, like howthey get from ideas to patients
(48:21):
, and how that's continuing tobe done at a quicker and quicker
rate.
That part is encouraging.
I hate to see any kid haveinflammatory bowel disease.
I'd rather be out of businesson that front, but I think we're
seeing more and moreopportunity for these kids to be
well.
Speaker 1 (48:37):
Totally agree.
And yes, unfortunately, I thinkwe are getting old enough to be
saying in somebody else'slifetime maybe not ours, but who
knows Fingers crossed thatthat's not the case.
Well, dr Patel, always apleasure to have you on the show
, always a pleasure to catch upwith you.
So thank you so much forjoining us and sharing your
wisdom and knowledge with us,and thank you everybody else for
listening.
(48:57):
So cheers, guys.
Speaker 3 (48:59):
Cheers everybody.
Speaker 1 (49:00):
If you liked this episode, please rate, review,
subscribe and, even better,share it with your friends.
Cheers.
Hi, I'm Alicia and I'm Robin and you're listening
to Bowel Moments, the podcastsharing real talk about the
realities of IBD Serve on therocks.
This week we talked to ourfriend and friend of the show,
dr Ashish Patel.
Dr Patel is thephysician-in-chief at Phoenix
Children's Hospital, where heleads four of their eight
(00:21):
clinical centers, includingEmergency and Diagnostic
Medicine, the Center for Cancerand Blood Disorders and the
Aerodigestive Clinic, along withsome medical subspecialties,
including the Inflammatory BowelDisease Clinic.
We talked to him all about thelatest conferences that have
been happening in pediatric IBDand everything that he's learned
in all of his travels going tothese conferences.
(00:42):
We had such a greatconversation.
I learned so much.
I know you will too.
Cheers.
Speaker 2 (00:50):
Hi everybody, Welcome to Bound Moments.
Speaker 1 (00:52):
This is Robin.
Hello everyone.
This is Alicia, and we arealways excited to be joined by
our friend, Dr Ashish Patel.
Dr Patel, welcome back to theshow, for I think this is your
fourth time.
Speaker 3 (01:04):
Third or fourth maybe , but I'm always happy to be
here.
Thank you for inviting me.
Speaker 1 (01:08):
Well, you are always invited back anytime, but we are
very excited to talk to youtoday about research, because
you have been to a couple ofconferences, you've done some
things and you have insights toshare with us.
However, we start, of course,with the very unprofessional
question of what are youdrinking?
Speaker 3 (01:22):
Oh, it looks so.
Yeah, as you remember, I'm overon the West side of the country
now, so it's only 1.30 here.
So I have my Coke Zero, mysecond or third one today.
Speaker 1 (01:33):
Robin, what you drinking.
Speaker 2 (01:36):
I have my tall glass of water, as always, but I'm
drinking coffee.
I have a lot to do today and Ihave to get through the day.
Speaker 1 (01:49):
And you know I can drink coffee all the way up
until I lay my head on thepillow.
It doesn't bother me, so I'm sojealous of that.
I am also still drinking coffee.
You know that normally this isnot a thing for me, but I just
my day got away from me.
So I'm on latte number two thatI made hours ago and it's very
cold right now.
Dr Patel, next question for youTell us what's going on in the
research landscape.
I know we wanted to start outwith kind of where things at
medication wise with for kiddosliving with inflammatory bowel
disease.
Speaker 3 (02:13):
Yeah.
So I think this year at NASPGAN, which was down in Florida, I
think you know you had thecontinued presence of all of
this sort of expanding landscapeof novel therapeutics in the
pediatric space when you've beendoing it this long.
You know, remember whenRemicade or Infliximab first
came to the market, right, andyou know I was a fellow in 2003
and we had this new medicationcome to the market and you know
(02:34):
we're like, oh, you know what,let's save it, let's use it,
what should we do with it?
And you know, fast forward now,you know, 22 years, since then,
it's really there's just been areally great focus on the
autoimmune process, theinflammatory pathways, the
(02:54):
cascade that can be hit fromdifferent areas, resulting in
the end result of uncontrolledinflammation, and so certainly
we've moved beyond.
Unfortunately, still the onlypediatric approved drugs are
your anti-TNFs, right, andthat's actually kind of sad that
you know we've now fastforwarded two decades.
We've been using a lot of thesemedications for a long time,
(03:17):
yet the only ones with sort ofpediatric approval are your
infliximab, adalimumab class ofanti-TNFs, and what we have seen
and what we saw, you know, Ithink nicely at the meeting, was
the continued emphasis frominvestigators all over the
country, some involved in someof the trials but many doing
investigator-initiated reportingon the continued sort of
(03:40):
landscape of anti-inflammatorybiologic I guess we'll still
call it a biologic class ofmedications and you know that
includes your, you know youralpha-4, beta-7 integrin
inhibitors, your IL-12, 23 class, your IL-23 class, your JAK
inhibitors, you know, moving infrom the adult space, your S1Ps,
(04:00):
and there just continues to bethis growing arsenal really of
medications that we could use ininflammatory bowel disease.
And what we're trying to reallyfocus on and learn on, and what
I saw a lot of greatpresentation on, was case series
or groups of patients that wereusing these medications in a
novel way because they're inpediatrics, not in a novel way
(04:24):
because they have adultindications.
But you know, I think it'sunfortunately a little bit of
the addressing that, one ofthose bigger issues and one that
again, I think I've been proudto be part of with NASPGAN,
where you know going to CapitolHill and advocating to our
legislators that we have tobring testing, we have to bring
(04:46):
evaluation of these medicationsto pediatrics concurrently with
adult populations, right, and Iunderstand we've always thought,
oh, pediatric patientpopulation is an at-risk
population.
You know, carve them out.
We can't test drugs on them,but our families or patients
with these chronic diseases orfamilies of patients with these
chronic diseases, are asking forit.
(05:07):
They want to be part of thatmoving the needle.
But then what happens in thecurrent state is that these
medications come out on theadult setting.
They get an adult approval andthen they sort of start
trickling down, you know, maybeto our 17-year-olds and our
16-year-olds and our15-year-olds.
Or you know we have a kid thatfailed.
You know, maybe to our 17 yearolds and our 16 year olds and
(05:28):
our 15 year olds.
Or you know we have a kid thatfailed.
You know two drugs.
He doesn't have another choicesurgery or going to a drug
that's not FDA approved inpediatrics, Right.
And so then people in usually inlarger centers, or people that
are known as thought leaders andI think you guys recently spoke
to Dr Dubinsky, right?
Did you have Dr Dubinsky on theshow?
She's one of my mentors andamazing.
But people like that use thesemedications because they
(05:49):
understand how they work.
Sometimes they were involved inthe trial, like Dr Dubinsky has
been involved in a lot of those.
But others of us, like, I'llcall Dr Dubinsky and say, hey,
here's something that I'mdealing with.
How would you think about this?
And I think we have a networkof really great thought leaders
around the country in pediatricGI, in the IBD space, connected
by NASP again, and we'll startusing these medications.
(06:11):
So then by the time a pediatrictrial rolls around which again
you just heard me say we needbut by the time it rolls around
we're already using it inpediatrics and we're
extrapolating doses and we'reextrapolating usage, of course,
being very sensitive aboutsafety and those type of things.
But then it's hard sometimes toget parents and families to sign
(06:32):
their children up for a trialwhen they say that well, I can
go and get the drug.
Or or could you advocate to myinsurance company which that's
probably a whole other show orsix, which that's probably a
whole other show or six but wespend hours sometimes trying to
get these medications approvedfor our patients.
But we are able to eventuallyif we advocate appropriately and
(06:53):
it's the right sort of cascadeof therapies.
But it just becomes very, verychallenging.
And I'll tell you now here atPhoenix Children's we're part of
several clinical trials.
We're part of severaltherapeutic trials.
We're part of severaltherapeutic trials trying to
help get pediatric labels forthese therapies but they're hard
to recruit for because you knowand patients want, parents of
(07:14):
patients want therapy.
Now, pediatrics, at least inthat sense, is different.
We never do placebo-controlledtrials, which is again often
what you're doing in adults,right?
You don't know if you'regetting drug or placebo, so we
don't do placebo-controlledtrials.
You're getting drug.
In pediatrics it's typicallylooking at dosing dosing and
then safety.
So we're looking at those twothings and I think that's where
(07:38):
the real focus has been.
So it was nice at NASA to seethat continue, and it wasn't
just in IBD, actually.
It was nice to see it in theEOE space and thinking about a
lot of the other differentdiseases that we take care of.
Speaker 1 (07:50):
Can you explain to people why a drug company
wouldn't just do a clinicaltrial with kids and adults at
the same time?
Speaker 3 (07:56):
Yeah, I think part of it has been there historically
the worry about safety, and Ithink that that was just sort of
something that was just always.
You know, you'll read thepackage insert of a lot of drugs
and you know at-riskpopulations were excluded
elderly and pediatric patients.
It's a really interestingconcept to me, right?
Because one of the things wesaid when we were on the Hill
(08:19):
and speaking and trying toadvocate for this early testing
in kids is that you know, one ofthe things that is actually
complicated in adults is all oftheir comorbid conditions, right
?
So now you got a 50-year-oldtesting this new drug on and he
may have heart disease orhypercholesterolemia or
hypertension or diabetes,whatever.
(08:39):
It is right.
And trust me, because, again Itold you, we're part of those
pediatric trials.
Now I always get safety reportsand it's like, oh, sign off on
a safety report.
The 60-year-old had emphysemaafter taking the medication.
Well, hopefully none of my kidswill have emphysema when
they're taking it.
But actually, you think aboutit, the pediatric patient
(09:01):
population as long as you haveestablished a baseline of safety
of the medication, thepediatric patient population is
probably a cleaner population totest them on.
They're not being affectedtypically by some of these other
conditions.
But I think that's been themain reason, alicia, is that it
was something they've sort ofheld on to for a long time, that
oh, if we test it on a kid andsomething goes wrong, then it's
(09:23):
going to look really bad becausewe tested it on a pediatric
patient.
Speaker 1 (09:27):
That does make sense.
I mean, nobody wants their kidsto feel like guinea pigs, but
especially as we're seeingyounger and younger patients
getting diagnosed, I mean itjust it limits your ability as a
physician so much to not have atrue arsenal that you can use
without having to fightinsurance companies every step
of the way.
One of the things that wetalked about with Dr Lee is in a
(09:50):
previous episode is the use ofcombination therapy.
I'm guessing that's probablyhappening quite a bit in the
pediatric population, justbecause you do have more limited
options.
So can you talk a little bitabout combo therapy for kids?
Speaker 3 (10:01):
Sure.
So similarly, when I firststarted doing this, the drugs
that were out there even sort ofbefore infliximab became more
readily available, was amedicine called azathioprine or
6-MP or Imuran all the same drugand then a drug called
methotrexate, which some of thelisteners may know as a
chemotherapeutic agent, and itis used as a chemotherapeutic
(10:24):
agent.
We're using it at a muchsmaller dose as an
immunomodulating agent.
Those are common drugs that weuse as oral agents.
We've seen over time thatthey're not great as monotherapy
agents and in fact have theirown set of complications,
particularly the class of drugsthat azathioprine 6-MP-imuran is
in.
(10:44):
After infliximab kind of came tothe market in the adult space,
there was actually a prettylarge fairly I would call
landmark study called SONIC thatcompared azathioprine
monotherapy, infliximabmonotherapy and azathioprine and
infliximab combo therapy, andthat study clearly showed that
(11:05):
the combo therapy was superiorto controlling disease in our
IBD patients, and so at thattime I feel like the adults
really really gravitated to that.
What had happened around thatsame time maybe a little bit
before, but kind of through thattime, I don't remember exact
(11:25):
dates but there were somepatients that were found to have
a type of lymphoma that wasthought to be associated with
the use of immunomodulating orimmunosuppressing agents and
they had a type of lymphomacalled hepatosplenic T-cell
lymphoma, which is ended upbeing a very, very serious type
(11:49):
of cancer and almost uniformlyfatal.
And the patients that developedthat lymphoma were young, were
adolescent and young malesalmost exclusively.
So the pediatric communityimmediately the pendulum swung
away from the use of combinationtherapy.
(12:12):
What was seen with the patientsthat developed hepatospinic
T-cell lymphoma is that theywere on combo therapy at some
point during their treatmentregimen, even if it overlapped
for a very short period of time.
So we as a pediatric communityreally went away from combo
therapy.
Our adult colleagues again sawthe study and saw the overall
(12:35):
rarity in their patientpopulation right, it's not,
they're actually probably nottaking care of a lot of young
adolescent males and so theyfelt more comfortable and safe
using that and they have.
And it doesn't seem like we'veseen a huge rash of these types
of cancers in the older patientpopulation.
(12:55):
In fact that has not been asignal.
So that's why it has reallybeen continued to be safely done
.
Now a couple of caveats.
Some people and in pediatrics,when we go to use combo therapy,
typically what we'll do is notuse azathioprine, which is the
one that was seen present whenthey used combo therapy in those
patients that were reportedwith T-cell lymphoma.
(13:16):
So we'll use something likemethotrexate if we want to use a
combo therapy or if we do use acombo therapy.
So I think it's something thatcontinues to be utilized.
I probably still have a handfulof patients on combo therapy,
but they would all be onmethotrexate and a biologic.
It has now become interesting,as the arsenal of therapy has
(13:38):
increased, that what about combotherapy?
Is that a word?
Biologic agents, right?
So what about if I take?
Hey, I have VitoLizumab which itworks really well, thought to
work a little slower though inmore recent studies.
You know, seen in real life,that it works faster than we
thought in the original studiesbut, say, a drug that you think
(14:00):
takes a little longer for onset,right?
So when VitoLizumab first cameout, we thought it took four to
six months to work.
And then what about stackingthat with, say, an Infliximab
that has a very rapid onset ofaction and so use it for its
rapidity of response and thenpull it off and let your
VitoLizumab be your long-termtherapy, right?
(14:21):
Or in some patients where youknow you use an oral agent like
tofacitinib, and where you havea gut-specific drug partnered
with a systemic drug likeInfliximab Again, vitolizumab is
also a gut-specific drug andpartner it, stack it with or
combo it with a systemic drug,and that's definitely has been
(14:43):
done.
We have done it very, veryrarely.
I haven't actually happened,but we've seen some very sick
kids here in our practice, wherewe have a couple that have
tried what we call combobiologic therapy, and I know,
again, large centers have donethat or have heard of that.
Not a lot of data out on it, sothat's another one that we need
to see reported more and morein the literature.
Speaker 1 (15:06):
I guess, as these newer therapies are coming out
and as we're learning more, itdoes seem that the IL-12s or the
IL-23s are performing reallywell, especially for certain
populations.
Are you able to use that as itrelates to some of your patients
, especially some of these supersick ones, like, for instance,
you have somebody withfistulizing Crohn's disease?
(15:27):
I think I've heard one of theaisles is a particularly
effective medicine for, like,that type of Crohn's disease.
Are you able to use that toyour advantage somewhat?
Speaker 3 (15:38):
Yeah, yeah, I think so.
I mean I think so.
The two medicines you knowStelara, which was the original
drug, the original IL classIL-1223, and then Skyrizzy,
which is now just a monoclonalIL-23 inhibitor whose data you
know Stolaris data was good andobviously got its FDA approval
(15:59):
for the treatment of adultinflammatory bowel disease, and
Skyrizzy data looks even better.
I think we have.
We have, but still not asfirst-line therapy in pediatrics
.
We typically still have to gothrough.
We used to talk about how wewant to get away with step
therapy or pyramid and all thisstuff where we were using
(16:21):
steroids first and then Imuransecond and then a biologic.
So now we're kind of in adifferent place of step therapy
where we're like oh, if we thinkthat Skyrizzy is better than
Remicade, then why are we usingSky Rizzi first when?
In pediatrics?
I think still because it has apediatric indication for the
(16:41):
most part, and not only becausewe have, you know, because maybe
of the pediatric indication.
I don't want to, I don't wantto overstate that, because we do
still think that the anti-TNFbiologics have great rapidity of
response, have great efficacyand overall safety when used as
a monotherapy, and so I thinkmost of us.
(17:02):
And then when you start talkingabout complicated disease, like
you mentioned, fistulizingdisease or stricturing disease,
I think again, also, we have themost data around the anti-TNFs,
but yes, we need to learn moreabout how these other advanced
biologics work, particularly inthat complicated disease course.
(17:22):
And that's hard because, thinkabout it again, when we think
about the type of diseases thatpresent to us in pediatrics, I
think still probably about 70 to80% of patients that we see
would say Crohn's disease arethe inflammatory,
non-structuring, non-penetrating, and so again, and our patient
population is a lot smaller thanthe adult population, the vast
(17:45):
majority of patients we see arethose patients.
Then maybe you have 10 or 15%that are structuring, 10 or 15%
that are fistulizing orpenetrating disease, right?
So just the number of patientsthat we still we have a chance
to gain experience on usingthese advanced therapies, I
think is still pretty limitedand I think still in the
literature and you know, atthese meetings again it's nice
(18:07):
to see but they're presented incase series or case reports.
We, for example, presented astudy that we had been working
on where we have some childrenthat had what was considered an
extra intestinal manifestation,where they had a genital
involvement of theirinflammatory bowel disease,
right.
So now we're talking about thisdisease that typically affects
(18:28):
the gut, but these patients hadinvolvement of their genital
organs, which it was, as you canimagine, it's just scary number
one but really debilitating forthese patients.
And now looking at what therapythey respond to, and again we
sort of saw that they neededmore aggressive therapy.
(18:48):
Even if it was the TNFs, it wasat the higher dose or the more
frequency to get penetration ofthe drug into some of their skin
and those organs to get aresponse.
But that was a case series oflike three patients, right, and
it's actually interesting, afterwe presented it we've had
people from around the countrysay, oh, I've had one of those,
one of those, and so now we'retrying to go back and say, hey,
(19:11):
can we actually collect a biggergroup to publish an article on
regarding that?
But I think that's going to bethe continued push in these
patient populations,particularly with the complex
forms of disease.
Speaker 1 (19:24):
Oh, those poor babies .
Oh my gosh, that sounds veryunpleasant.
That's the wrong word to evenuse for that.
Really, that soundsdebilitating.
This is going to be an off thewall question, so you don't have
to answer it, and then I'mgoing to circle back to clinical
trial.
So here's your warning.
I am so curious about when youscope somebody.
Can you tell a differencebetween a Crohn's disease or an
ulcerative colitis?
(19:44):
Like how, what is?
What is the difference in howthey look?
Speaker 3 (19:47):
Yeah, yeah.
So sometimes you can.
There are some gross findings,you're right.
In the end we really like tohang our hat on microscopic
histopathological results, right.
So looking for chronic activeinflammation in all of the
regions, right.
But there are some gross, Ithink everyone would understand.
(20:09):
But visual differences.
And so ulcerative colitis tendsto be what we call a continuous
disease.
That should start in yourrectum, so right.
When you put the scope ininflammation that then extends
proximally, right.
So the three types ofulcerative colitis are really oh
, I have proctitis, or I haveleft-sided disease, or I have
(20:30):
pancolitis, right.
So typically inflammation in acontinuous pattern that starts
in the rectum and extendsproximally.
With ulcerative colitis youtend to have more bleeding.
The tissue is very sensitive,the scope touches it and it
bleeds those types of things.
And sometimes you can seepseudopolyps in ulcerative
colitis because the inflammationhas been going off for so long.
Not real cancerous polyps, butthen there's sometimes a lot of
(20:53):
them, but they're aninflammatory response.
In Crohn's disease, what's beendescribed visually is that it
can be skipped areas, right.
So you put the scope in rectum,looks clean.
Sometimes you have this conceptof rectal sparing doesn't
affect the rectum but then youget up and there's an area that
(21:13):
looks inflamed, go a littlefarther.
Oh, it looks good again.
Then you go a little further.
So that's typically classicallybeen referred to as skip
lesions, areas here and there,and then really probably the one
big sort of gross or visualfinding is location or real
estate right.
So with ulcerative colitis theinflammation should be limited
(21:33):
to the colon.
If you then get into the smallintestine, the ileum, and you
see inflammation there,ulceration, exudate,
inflammatory polyps, then yourmind's right is turned on to it
being Crohn's.
That's why also because it's soimportant in terms of how we
think about therapy inpediatrics typically these
patients when they're gettingIBD evaluations, they will get
(21:56):
an upper endoscopy and acolonoscopy simultaneously.
You know, one of the things wedid again 10 or 15 years ago we
started Improved Care Now wasthinking about a diagnostic
bundle like how do weappropriately evaluate these
kids at their diagnosis?
And that diagnostic bundle nowsays that patients being
evaluated for IBD should get anupper endoscopy, a colonoscopy
(22:19):
and some formal small bowelimaging.
So even where I can't get towith a scope, they should have a
upper GI small bowelfollow-through.
We use MREs a lot because it'sno radiation MRI magnet.
Some people do what's calledsmall bowel capsule, but that's
the diagnostic bundle to makesure they don't have disease
hiding in other places.
(22:39):
So there is a way to tell that,but you want to always match
that to then what the biopsyfindings are.
Speaker 1 (22:46):
Got it.
Thank you for that.
Okay, circling back to clinicaltrials, so one of the things
you said is that there islimited engagement in clinical
trials because a lot of peoplecan still get access to the
drugs as long as you fight withtheir insurance companies enough
, I guess.
My question then is what's theimpetus for somebody to
participate in a clinical trial?
Is it like because youtypically get free drug when
(23:08):
you're on a clinical trial?
Is that part of it?
And then also, how do you layerin the sort of health equity
component of that Like is itthat there's, like it then
becomes, this whole populationof people that just don't are
underinsured or uninsured or,frankly, poor?
Like what is it that?
How does that sort of layer into what we're looking at for
clinical trials?
Speaker 3 (23:30):
Yeah, a hundred percent.
You know, we certainly worryabout that in the pediatric
space, right, because one of thethings is that we're trying to
provide through a trial, oftenin the adult population, you're
providing access to a therapythat's not otherwise available,
right, so that's very clear.
And you participate in research.
Again, I've done research wherethey're like you know, why are
you giving them a $10 card?
You know it can't be coercive,and I was like a $10 gift card
(23:52):
is coercive.
But so, also, right, we don'tpay money to do this because,
again, we can't, we don't wantto jade that population by
making it some sort of afinancial windfall for the
parent or for the patient adultor pediatric, right, pediatric,
obviously, they're not gettingthe money the parents own.
So we have sort of tried to tryto be careful in terms of how
(24:14):
we phrase that when we approachfamilies in terms of access.
I think still, on the whole,most of the families that do
sign up for it, they like theidea, as do we, that there's
actually a little bit moreoversight almost when you're in
a clinical trial, both in termsof sort of laboratory workup,
(24:34):
those type of things, afrequency of appointments.
Sometimes there's saying, okay,we'll have another endoscopy
that's paid for by the study ata year.
So I think in some sense someof the families look at it as an
opportunity to have a littlebit of extra oversight when
they're using a new medicationthat's appreciated.
The flip side of that is wait.
I got to come for 12appointments in the next 12
weeks because a new medicationthat's appreciated.
(24:55):
The flip side of that is wait.
I got to come for 12appointments in the next 12
weeks because you know thatsometimes you know that's I'm
over-exaggerating, you know, butit is definitely more
appointments than you would come, and so it is sometimes a
balance of that and I thinkthat's where sometimes families
look at it, sometimes families Iknow I hear them talk out loud
(25:17):
and they do.
I think financial peace is aconsideration of what can they
feel like they can safely affordfor their child.
But we do try to make it veryclear that if you don't do the
trial, we're going to proceed inthe same way.
We did right and whether you'rein the trial or not, your care
is the same.
And if this medication doesn'twork, whether you're on the
trial or not, your care is thesame.
And if this medication doesn'twork, whether you're on the
(25:39):
trial or not, I'm going to holdit to the same fire.
You will come off the trial ifit's not working.
We'll come off the drug if it'snot working and we're not in a
trial.
Speaker 1 (25:47):
Okay, thank you for that.
Moving on, the other activitythat you did not too long ago
was to go participate in theworld Congress of pediatric IBD
in beautiful Buenos Aires.
So please do tell us about thattrip and all the things you
learned there.
Speaker 3 (26:02):
That it was absolutely amazing.
So just maybe a little bit ofcontext for some of the
listeners.
Every year, of course, we haveNASP again, our annual pediatric
GI meeting.
We learned a bunch of stuff,actually, we learned actually
going on the hill at thepediatric GI, which I would
encourage everyone to go into.
It's a great profession, butit's one of the pediatric
(26:24):
subspecialties that actuallyholds their own conference, like
pulmonology doesn't have theirown pulmonology conference every
year, they just go to theAmerican Academy of Pediatrics
conference or the largerpediatric conference, but Peds
GI has their own conference,which is NASP.
Again, for those that live herein North America, there's
equivalent, I think, foursocieties around the world the
(26:45):
European Society, the LASP,again the South American Society
and then the Asian Society, andI'm blanking on the acronym for
them right now.
So every year, nasp can hostour annual meeting and then
every four years, these foursocieties come together to hold
what's called the World Congressof Pediatric Gastroenterology,
(27:06):
and four years ago everyoneremember what that was COVID.
It was supposed to be in 2020,and it was supposed to be hosted
by the European Society inCopenhagen.
It was on my calendar to go andit got mostly moved to virtual
and so it was.
Unfortunately, it didn't happenthis year actually not this
year, it's 2025,.
2024 was the four-year mark andit was hosted by the Latin
(27:29):
American Society in beautifulBuenos Aires, argentina.
So I had the opportunity to godown.
It actually was really fun.
It was the week afterThanksgiving my kids are big
enough now and so we took themthe week before over
Thanksgiving and we went down toBuenos Aires and we went down
to Calafate, which is near thePrieto Moreno Glacier, fourth
(27:51):
largest ice field in the worldand, as you know, sadly, like
all of our ice fields, shrinkingbut just absolutely beautiful
One of the few ice field orglacier that you can walk onto.
So you take a trek and then youjust essentially walk onto the
glacier.
We had to put our crampons onand got to sort of walk around
(28:12):
the glacier.
It was a lot of fun.
And, speaking of a good drink,at the end of hiking around the
glacier, the guy goes and chipsglacial ice and pours you a
whiskey on glacial ice, whichwas really cool.
It was really bad whiskey, butthe ice was the best and you
(28:33):
know it's.
It comes off this glacier,right, so it's so dense.
The guy says that that ice willstay not fully melted for like
72 hours, because it's so dense,right?
The ice that's made in yourrefrigerator has a bunch of air
in it, so it melts away.
Because it's so dense, right?
The ice that's made in yourrefrigerator has a bunch of air
in it, so it melts away.
That was really, really cool.
We then went further down toCheltenham, which is near, is
(28:53):
not near, is at the base ofPatagonia.
So we were at the base of those, the famous mountains that
everyone knows by visibilitybecause everyone's seen someone
wear a Patagonia fleece orsweatshirt.
But those mountains were rightin front of us in real life and
it was incredible.
So we did a hiking expeditionone day and we did a horse
riding one day and we did a.
My kids have gotten intoclimbing and so we actually did
(29:16):
a climbing thing with a climberhe, he but he went up and put a
big hook in and then he let thekids climb up and belay down.
It was fun, just beautiful,beautiful country.
Their natural resources arereally, really protected.
They don't drill or really doany exposure of the natural
resources controlled by thegovernment.
There's probably some good andbad around that, but it's a
(29:37):
beautiful, beautiful country andthen the family came home and
then I stayed for the WorldCongress, which was back in
Buenos Aires, and it was reallyreally great experience.
The last time I was in SouthAmerica for a World Congress was
for the one hosted in IguazuFalls in Brazil.
That was in 2008.
And I remember from then too,but this time again it really
(29:59):
reminded me about some of thedifferences in approaches to
disease states.
I'll tell you in the conventionhall there, you know again a
lot of all the booths set up,but they were all nutrition
companies all formula,supplemental nutrition, advanced
nutrition companies.
There was no biologics, therewas no drug companies.
Actually, funny enough, theonly other two stands.
(30:22):
Well, there were some probioticstands, and then the other two
stands were a eat more meatcarne Argentina stand and a wine
wholesaler that they had set up, I think, for people that were
attending from around the worldthat they could ship wine home.
But, it was really great andeven the programs themselves.
Like you, would go to session.
There would be an IBD sessionand there would be whole
(30:44):
sessions focused on nutritionaltherapy and changing the
microbiome and using probioticsand thinking about really, as
you can imagine, right likethese countries, what they have
access to.
Right, they don't have accessnecessarily to biologic du jour,
the newest biologic, or even,quite frankly, probably
(31:05):
infliximab or adalimumab veryeasily right Now.
Maybe this biosimilar spacewill change some of that,
because some of thesebiosimilars have come from some
of these other countries.
But it was really really great.
I attended a session that youknow talked about.
You know pros and cons of acarnivorous diet and pros and
cons of a vegetarian diet orvegetarian versus vegan
(31:25):
differences, and people aremeaningfully looking at not only
is it like, oh, you know it'shealthier, but how is it
changing your microbiome, how isit changing disease, history
and course and process and allof those things.
So it was great.
It was a fun meeting to attendand it's always nice.
We love traveling and so it'salways great to be in, see the
(31:48):
different culture, both cultureyou know restaurants and
nightlife and the history inthis place.
You know Buenos Aires wasoriginally largely settled by
well, obviously, nativeArgentinians, and then a lot of
Spanish influence and then a lotof the city burnt down at one
(32:08):
period of time and then theItalians came back and built it.
The architecture is justbeautiful.
It is a really, really prettycity.
People always talk about itbeing a very European city in
South America and you coulddefinitely see that in the
architecture and it was a lot offun.
It's a long flight, but nothorrible.
You know, you always think inyour mind that South America is
just straight down, but you knowit's, the time difference was
(32:31):
only four hours, but it's a onehour ahead of East Coast.
So it's, you know, over.
So we flew from here to Houstona couple hours, not bad, and
then 10 hours from Houston toBuenos Aires.
A little bit of a long flight,but not a big time change, but
it was great.
Looking forward to the next,they announced World Congress
2028.
(32:51):
Maybe we should do the podcastfrom location.
Speaker 2 (32:57):
I agree, yes.
Speaker 3 (33:00):
Let's get some support for that, so it's going
to be hosted.
Speaker 1 (33:04):
Lake Farms.
We're talking to you.
Speaker 3 (33:07):
Hosted by that Asian Pacific Island group and I'm
sorry I'm blanking on the name.
I should know it if we'reasking for money, but it's being
held on the Gold Coast inAustralia, so not in Sydney.
But what's the town just upfrom Sydney?
Oh, I'm blanking on it.
It's not Melbourne, no,brisbane.
(33:29):
Brisbane, that's it.
Yeah, yeah, so it's going to bein Australia is World Congress
2028.
That's awesome.
Speaker 1 (33:35):
I mean 100%.
I think we should do it becausenow you know, we just
interviewed Tish, who is inMelbourne, and so I think you
know, and we just finishedtalking to the, you know, the
CEO of Crohn's and ColitisFoundation of New Zealand, so we
have to go visit, right?
Speaker 3 (33:50):
That's right.
Speaker 2 (33:52):
That's right.
Okay, I have a question aboutthese sessions at the World
Congress.
Do they do more diet-relatedresearch in other countries
because of access, and if theydo, why aren't we referencing
that here?
Speaker 3 (34:06):
Yeah, I think it has been done.
It just hasn't been publishedor talked about or discussed,
but now it is.
So now we are getting some oftheir experience and data, even
like we did with the Europeanstudies around exclusive enteral
nutrition, partial enteralnutrition.
You know, we drew a lot of thatwork from those places, but I
(34:28):
think just historically, youknow, we haven't not a lot has
come out from some of thosesites and they may have been
sort of using it and that's justtheir standard of care.
You know, when we first weretrying to figure out exclusive
enteral nutrition, we're likehow is anyone doing this in
Europe?
Europe says they're doing thiswith all the patients.
Well, that's the therapy.
(34:52):
They don't have another choice.
It's not like you're like oh,here you know, go on formula for
12 weeks or let me give youRemicade.
Your choice is to do that.
Now, you know, again, Europehas changed as well, but I think
in some of these places, yeah,that, due to access, this is
what they do.
Speaker 1 (35:03):
So of the diets they were discussing, was there any
that seemed more effective?
Or did it depend on the country?
Because I mean, I know fromwhat we've heard it sounds like
places that start to adopt amore westernized diet do tend to
see an increase in inflammatorybowel disease.
So was there a difference insort of the type of diet and
(35:25):
then also where the diet wasbeing done Like?
Is it like the pescatarian dietin Japan worked really, really
well?
But it might be because it'sJapan.
Speaker 3 (35:34):
Yeah, yeah, no, I think I think there is an
environmental role, mostcertainly Right, and you know,
we've seen it.
You know I I try to keep alittle bit of a pulse on India.
You know where I'm from, wheremy family's from, and you're
exactly right, you know, you sawthat not only was it, one of
the things that is happening isthe movement from a rural
(35:59):
society to an urban society.
That shift right is ageographical or physical shift.
It's also a shift in where yourfood comes from.
As you get more and moreurbanized also, you have to make
so much food for a populationin a limited amount of place.
But the environmental factorschange too.
You're not living on the farmanymore, you're not being
(36:22):
exposed to some of the normalbugs and dirt things that you
wore, and so a lot of people saythat some of the changes we're
seeing in some of thesedeveloping countries is where
the US was 50 years ago or 60years ago and where we've seen
again, if we look backhistorically, this continued
rise of autoimmune conditions,including inflammatory bowel
(36:44):
disease.
I think this, what you'resaying, is what makes diet
research so hard, is thatthere's so many variables in it,
right?
When I first started at UTSouthwestern.
I had this idea and it justbecame so like log jammed with
variables.
But I was like you know.
I would love to see like if youcould take migratory
populations, immigrants landingin this country that don't have
(37:06):
a strong history of inflammatorybowel disease in the country
they come from, and thenactually following them now
again, also has to be.
It can't be a one month study,right?
You're probably talking aboutchanges that occur over five, 10
, 15, 20 years, as thatimmigrant acclimates to a
(37:26):
society, to living here orliving wherever they move, and
maybe initially still eats allof their own, all their own
traditional food, though it'snow the source is different,
right, but they may be stilleating the food.
Now they started eatingMcDonald's or they started
eating Chipotle or whatever.
They start now integrating infast food or processed foods and
but they foods, but their dietis still mixed.
(37:48):
Now they may be an immigrantthat comes from a vegetarian
country, like India for the mostpart, and then moves to a place
where now introduced.
So again, the point is, thevariables are so the amount is
so many, because we know, evenwhen we look at microbiome
studies in our own country, inthe United States, we did that
(38:09):
in one of our pediatricconsortiums one time, and you
could see that patients with IBDin the Northeast had a
different microbiome profilethan patients in the Southwest
or on the West Coast and Midwest.
And so we're like, oh well, wehad hoped to do this to figure
out what microbiome was bad,what was causing IBD, and then
what we just found out is, ohcrap, literally it's being
(38:32):
caused by a bunch of differentmicrobiomes in different
varieties that impact peopledifferently.
That has been.
I think the real struggle withdoing good dietary nutritional
therapy research is that thereare just so many variables that
play a role.
Speaker 1 (38:47):
Is there anything common?
Is it like this kerogen orwhatever they are?
Is this preservative, somethingthat is universally known like
red dye, number four, orwhatever it is?
Has there been anything thatwe've been like?
Okay, this is the common threadthat nobody should have Not
really Not that we've seen.
Speaker 3 (39:05):
We've even looked back at, like you know, going
back to, you know, even, sort ofpre-diet, like what was your
route of birth?
Right, vaginal versus c-section, because that's the first
inoculation of bacteria in yourbody.
How were you fed, you know?
Is there a difference,breastfed babies versus formula
fed babies?
Again, because we know, atleast we think, that a large
(39:29):
amount of your microbiome isestablished in the first few
years of life and you're notchanging it a whole lot, though
you might.
If you move, your diet changessignificantly.
But, there hasn't been a yeahnot really what you know, like
what we I think are looking foris a smoking gun, right, like
hey, this causing a problem in avast majority of people?
There was a time when somethingcalled mycobacterium avium
(39:53):
paratuberculosis was talked alot about.
It causes a similar type,phenotype of disease in cows and
we're thinking, well, are wepassing that from milk to humans
?
And it's causing disease, asimilar disease now called
Crohn's disease in humans.
But you know, they againsimilarly, just as they got
(40:15):
bigger populations and looked atit, they just weren't able to
identify it in a vast amount ofthose patients.
So I think that's probably ourcontinuous biggest struggle as
research.
Right, therapeutics is reallygreat because it's improving the
quality of life of our patients.
It's changing the naturalhistory of disease, decreasing
the amount of hospitalization,surgeries and risk of cancer in
(40:37):
those patients.
But it's not, you know, wealways talk about like how to.
In my lifetime I still hope thatthe research that's being
looked at in terms of etiologiesstarts being able to pull out
buckets or buckets of patientswith a particular type of
etiology that then could becured.
Because when this MAPconversation was going on, one
(40:58):
of the theories was like, well,just put them on tuberculosis
therapy, because atuberculosis-like drug put them
on tuberculosis therapy for ninemonths.
See if it cures their Crohn'sdisease.
Well, first that's a pain, it'sa lot of medication and it
didn't actually cure theirCrohn's disease.
But like that right.
So can we actually figure out?
Are there particular types ofCrohn's disease that might be
(41:20):
amenable to curative therapyrather than just therapeutic
therapy?
Speaker 1 (41:26):
Isn't that what you were doing with the risk
stratification study?
Speaker 3 (41:29):
Yep, yep.
Similar right Is that we werelooking at trying to figure out
if there were features of theirdisease that we could see at
time point zero, that couldpredict where they're going to
be and use that data todetermine how aggressive we need
to be in their therapy, right?
Similarly, now CAMEO, that'sanother sort of study where
(41:51):
we're taking all new diagnoseswith Crohn's disease.
We're actually trying tocapture patients at diagnosis.
We're actually recruitingpatients at high risk of
suspicion Crohn's disease beforetheir scope and then capturing
material at their scope and thenif they have Crohn's disease,
then they go into the study andthey're followed forward.
(42:12):
And then how biologics changethe natural history of disease.
So that's actually a large NIHfunded study that's going on
right now.
That's multi-center around thecountry that hopefully will try
to shed some light on how do we,can we understand how patients
not only appear at the beginning, but how do things change and
(42:32):
when do you enter with abiologic?
Does that affect how it changesthings and those types of
things?
Speaker 2 (42:38):
What do those kinds of studies, if anything, tell
you about the adult population,since you're following pediatric
patients from the point ofdiagnosis?
Speaker 3 (42:47):
Yeah, it's been something that's hard right,
Because you can imagine likethey turn 18, 19, 20, and then
they go to an adult doctor andthen we don't hear about them
again usually right.
But I'll get sometimes a weddingannouncement or a graduation
announcement, but not howthey're doing 20 years from now.
And so some of the registriesthere's a few registries now
(43:08):
that are aimed at more trying tocapture data and it was
something like when the FDAapproved some of these
medications.
They told the companies youhave to make a 20-year registry.
We don't want to just know whatthe risks are in a year.
You need to follow any patient,as many patients as you can
over a 20-year period.
Right, and we're actually stillpart of both of those, two of
(43:29):
those registries where we enrollpatients.
But I think it is hard for usstill to have that complete
visibility of what happens onthe adult side when they get
into that adult practice.
And you know, usually we don'thear if there's a complication
or a problem, unless they wantto know something very specific
about their therapy when theywere a pediatric patient.
Speaker 2 (43:49):
Right.
I think it would be fascinatingto be able to know that.
Speaker 3 (43:53):
Yeah.
Speaker 1 (43:53):
Well, and I'm curious about the genetic component of
this.
Is that something you're alsolooking at Like?
Are you doing genetic testingfor all these kids as well and
trying to see what is maybe acommon thread as well?
Speaker 3 (44:05):
Yeah.
So in some of these studies,like I mean, I think in some of
our these new longitudinalstudies, we are collecting blood
work, looking at some of thosethings.
It's not stuff that we have theknowledge to share back with
families real time, but the hopeis that when we put the data
together as a whole, then we canlook back and say two things
right, are there geneticfeatures that tell you how the
(44:25):
disease is going to behave?
Is there genetic features thattell you how you're going to
respond to medication?
Right, because that's the otherthing.
Right, it's like we, you know,using this step therapy, I'd
love to be able to draw bloodwork on a new diagnosis and tell
you what the best medicine foryou is today.
Or diet right, what's the bestdiet for you today?
Like it doesn't have to be justmedicine, right?
(44:49):
We don't want to say just onmedicine, like what, what are
the things that could changeyour natural history of disease?
Speaker 1 (44:53):
Or even if there's an environmental component you
could change too.
You know, like, are you livingin a in the mountains where
there's not enough oxygen, orare you living in Houston where
there's a bunch of toxic mold?
You know, whatever it is likesorry, houston, but you know
what I mean.
Like is, is there other othercomponents to this as well?
Cool, exciting times, excitingtimes, and I a hundred percent
love your idea of us going toAustralia and doing, you know,
(45:17):
some live podcasting there.
And it is the Asian pan Pacificsociety for pediatric
gastroenterology, hepatology andnutrition.
So apps, apps, gun.
Speaker 3 (45:27):
Maybe.
How do?
Speaker 2 (45:29):
I get an app scan.
Speaker 3 (45:31):
A lot of a lot of a lot of consonants without many
vowels.
Speaker 1 (45:39):
No, there's just two A's.
That's it.
It starts with an A and almostends with an A.
So yeah, a P P S P G H A N.
How would you say that?
Speaker 2 (45:49):
AppScan that's how I would say it AppScan.
Speaker 3 (45:51):
All right, that's what we'll go with.
Speaker 1 (45:53):
Nobody put me in charge of naming things.
It's probably wise.
Actually, that's not true.
I named this podcast, didn't I?
You did.
Speaker 3 (46:29):
Maybe they should put me in charge.
Okay, last question for you, drPatel.
Tell me something that youfound super hopeful about the
recent learning experiences thatwe're living in.
The current research effort,interest, energy that's being
put into inflammatory boweldisease obviously is greater
than any time in history.
We just know more.
We're still learning a lot.
It's sometimes humbling becauseyou know, you go to medical
school you think, oh well, Iknow everything I need to know.
(46:50):
I went to medical school andwe're constantly learning about
the human body and how itchanges and how it responds and
pathways, and so that's actuallyreally cool to me.
That's something I tell medicalstudents and residents and
fellows that we interact with.
Still, is that always challengethe norm learn more.
If it doesn't fit, then itdoesn't fit, rethink it.
(47:12):
But for parents, I think myencouragement is that we are
living in a time where therecontinues to be a really a
strong emphasis on understandingpathophysiology, disease
history, natural history, riskand then therapies.
And I think what I continue toleave these meetings that I go
to is with this renewed hopethat there is really a near
(47:34):
future where you know at leasttypes of this disease are going
to be, where we're talking aboutsomething that's curative
rather than just therapeuticright.
It cures your disease, not justa band-aid, and I think that's
encouraging for allid and Ithink that's encouraging for all
of us.
I think that's encouraging forour patients to hear.
Now, I'm getting old, sosometimes when I tell my
patients I say well, in yourlifetime, I think or I hope that
(47:57):
this is happening.
I think maybe when I was firststarting I may have included
myself in that conversation, butI really do think that what you
hear and just the incrediblework that's been being done.
We had a really neat keynotepresentation recently, john
Bernard, that just talked aboutjust how, even as you think
about single therapies, like howthey get from ideas to patients
(48:21):
, and how that's continuing tobe done at a quicker and quicker
rate.
That part is encouraging.
I hate to see any kid haveinflammatory bowel disease.
I'd rather be out of businesson that front, but I think we're
seeing more and moreopportunity for these kids to be
well.
Speaker 1 (48:37):
Totally agree.
And yes, unfortunately, I thinkwe are getting old enough to be
saying in somebody else'slifetime maybe not ours, but who
knows Fingers crossed thatthat's not the case.
Well, dr Patel, always apleasure to have you on the show
, always a pleasure to catch upwith you.
So thank you so much forjoining us and sharing your
wisdom and knowledge with us,and thank you everybody else for
listening.
(48:57):
So cheers, guys.
Speaker 3 (48:59):
Cheers everybody.
Speaker 1 (49:00):
If you liked this episode, please rate, review,
subscribe and, even better,share it with your friends.
Cheers.
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