Pediatric Research Roundup with Dr. Jeremy Adler

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The quest for better outcomes in pediatric IBD has taken significant strides forward, and Dr. Jeremy Adler returns to Bowel Moments to guide us through the most promising research developments of the past year. Dr. Adler is a clinical Professor in the Division of Pediatric Gastroenterology at the University of Michigan and serves as the Interim Director of the Susan B. Meister Child Health Evaluation and Research (CHEAR) Center. 

We discuss how medication dosing strategies have evolved dramatically, with compelling evidence showing that body surface area measurements work better than traditional weight-based dosing for younger children. This seemingly simple adjustment yields dramatically better results, particularly as children grow and develop through puberty. Regular therapeutic drug monitoring—checking medication levels every 6-12 months or more frequently during growth spurts—has also proven critical for maintaining disease control in the pediatric population.

Prevention emerges as the cornerstone of Dr. Adler's research and clinical philosophy. The fascinating GEM study has identified changes in gut permeability that occur before IBD diagnosis, potentially opening doors to early intervention before symptoms appear. Meanwhile, Dr. Adler's own groundbreaking research demonstrates that early, aggressive treatment with anti-TNF medications can prevent serious complications like perianal fistulas, fistulas, and abscesses—complications that significantly impact quality of life and body image.

We navigate the complex terrain of treatment barriers, from insurance denials to psychological resistance to "stronger" medications. Dr. Adler challenges common misconceptions, noting that injectable or infusion medications often have better safety profiles than some oral options that patients perceive as "less intense." The conversation turns to normalizing surgical options like ostomies when needed, with Dr. Adler advocating for early introduction to surgical teams—not because surgery is imminent, but because establishing relationships reduces trauma if intervention becomes necessary.

With new medication mechanisms emerging and genetic markers helping to personalize treatment approaches, the research landscape offers real hope for children with IBD. Join us for this candid, informative discussion about protecting children from the worst outcomes of IBD through early intervention, personalized treatment, and collaborative care models that address both physical and mental wellbeing.

Links: 

• Research article- Preventing Fistulas and Strictures Among Children with Crohn's Disease
• Journal Article referenced- National Perspectives of Barriers by Insurance and Pharmacy Benefits Managers in Pediatric Inflammatory Bowel Disease
• ImproveCareNow

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Episode Transcript

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 bring back DrJeremy Adler.
Dr Adler is a clinicalprofessor in the Division of
Pediatric Gastroenterology atthe University of Michigan.
He also serves as the interimdirector of the Susan B Meister

(00:22):
Child Health Evaluation andResearch Center.
Dr Adler has a clinical andresearch interest in the care of
children and adolescents withCrohn's and ulcerative colitis.
His research focus is onimproving short and long-term
outcomes and health-relatedquality of life for children
with IBD.
He's been working on developingevidence-based strategies for
preventing disease-relatedcomplications such as fistulas
and pouchitis and to mitigatedisparities among children with

(00:45):
IBD.
We talked to him all about thepediatric research that's been
happening in the last year andwhat he's most hopeful and
excited about, as well as many,many other things, and we think
you're going to love Dr Adlerjust as much as we do, and he's
welcome to come back anytime.
Cheers.

Speaker 2 (01:04):
Hi everybody, Welcome to Bell.

Speaker 1 (01:05):
Moments.
This is Robin.
Hey everyone, this is Aliciaand we are so excited to be
joined once again by Dr JeremyAdler.
Jeremy, welcome to the show.
How are you?

Speaker 3 (01:15):
Thank you very much.
I'm well, thank you, and I'mreally honored to be back.
It was nice last time and thankyou for putting up with me and
asked me to come back again.

Speaker 1 (01:22):
You're easy to put up with.
So, as I mentioned before, youare very welcome to come back
anytime, but we are very excitedto have you back to talk
research with us, specificallythis time.
However, we always started outwith our unprofessional question
of what are you drinking?
And since I can tell you're inthe office, I'm guessing it's
not alcoholic.

Speaker 3 (01:39):
It's not, and normally it would be coffee, but
I have to say I'm drinking DrPepper.

Speaker 1 (01:46):
That is my treat that I allow myself, which is
probably there's probably morethan one, but I will only drink
soda if I go on road trips.
So if I am in the car for aprolonged period of time, I
allow myself to get a fountainsoda, and I am a big fan of
getting a Diet Dr Pepper.

Speaker 2 (02:01):
That's actually a good rule of thumb Alicia, I
like that.

Speaker 1 (02:04):
Yeah, yeah, I try.
I try to have discipline everyonce in a while.
It's not always great, but thisone I've done really well at
Robin, what about you?

Speaker 2 (02:15):
I am drinking a Topo Chico sparkling water, raspberry
with lemon today, and alsoregular water.
You don't have to have a coupleof kinds of water.

Speaker 1 (02:24):
Yes, yeah, no, you are a beverage goblin, I think
is what you've describedyourself as I am.
I am drinking a Spindrift lime,so love a Spindrift.
And then also I had an openbottle of Champs, so I decided,
in honor of talking to you again, I will be drinking the rest of
this champagne.

Speaker 3 (02:42):
Cheers.

Speaker 1 (02:43):
Cheers, cheers.
Anyway, we're not here to talkabout champagne.
We're here to talk aboutresearch and children with
inflammatory bowel disease.
So next question for you is,jeremy, we would love to hear
what is new in the IBD space,research-wise for kiddos.

Speaker 3 (02:57):
There's a lot of new research going on, a lot of
exciting research in pediatricsand there's some in the adult
world that's relevant topediatrics, so I don't even know
where to begin because there'sso much of it.
I guess, to start with, there'sbeen a number of studies that
have looked at differentapproaches to treatment of
inflammatory policies.

(03:18):
You know, in pediatrics we'relimited because we only have a
couple of drugs that areapproved, you know infliximab
and adalimumab, so we need tomake the most of those medicines
.
We of course use the othermedicines when we need them, but
we have to start with the onesthat are approved, and one of
the problems that happens iskids' metabolism is not the same
as adults, and particularly asthey're growing and gaining

(03:40):
weight and getting larger andgoing through puberty and
everything.
So we use for these medicinesweight-based dosing.
So milligrams per kilogramtypically, and that's true for
kids and adults.
But there are some kids whosemetabolism is different and out
of proportion and the standardweight-based dosing just does
not work.
So there was a really nicestudy done out of the Toronto

(04:02):
group that took a differentapproach to trying to dosing a
couple of different medicinesusing body surface area, so
measurement sort of morecomprehensive measurement of
body size and it actually worksbetter for younger children than
weight-based dosing.
So I think that's reallyimportant because if we get the
dosing right in the first place,the medicine is more likely to

(04:23):
work and more likely to keepworking.
And we know from many, manystudies that the first medicine
you use is usually your bestshot at getting things under
control.
And we know from other studiesthat the sooner you get the
disease under control, thebetter the outcomes.
So I think that's one of thereally important studies this
year by Stollard's group,toronto.
The study was really nicelydone and showed that if you

(04:45):
alter the dosing so that you usebody surface area instead of
weight, the medicine's moreeffective and they showed it.
There's actually a couple ofdifferent studies out of the
same group that showed it fordifferent medications in the
younger kids, which is reallyimportant because we often are
pushed to give standard dosingof five milligrams per kilogram
per dose of infliximab, which iswhat the US Food and Drug

(05:08):
Administration originallyapproved back in 1997 or 1998.
And that dose is probably notenough for many people, even
adults, but for younger childrenin particular it's woefully
inadequate.
And when you use too low a dosenot only does the medicine not
work, but you're also morelikely to develop anti-drug
antibodies, so where the immunesystem starts to attack the drug

(05:28):
and then it really stopsworking.
So I thought those were somereally nice studies to help us
do better with taking care ofkids with these diseases.
There's a couple others relatednot related, but in the same
sort of topic area, if you want.
So when we treat kids withthese biologic medicines
infliximab and adalimumab Ialluded to it earlier that you

(05:51):
want to get the dose right andthe metabolism is different, we
have to use different dosing.
But also kids are growing, soit's totally a moving target.
We're fortunate now that we canactually measure the level of
the medicine in the bloodstream,the trough level of the
medicine.
There are now a couple of morepapers in children and
pediatrics to show that if youcontinue to measure that level

(06:13):
on an ongoing basis, every sooften, it gives you an
opportunity to tweak the doseand be proactive about adjusting
it before the kid outgrows thedose.
And so, even though the adultguidelines say you never, you
know, check the level once inthe beginning.
As long as someone is doingokay, you don't have to check it
anymore.
It doesn't really apply to kids,because kids are growing and,
as we were saying before, youknow, growing and going through

(06:34):
puberty, the metabolism ischanging and everything.
So there's now a couple of morestudies to support that we
really should be checking druglevels in kids.
Don't know how often.
Every six to 12 months isprobably right, and there is a
forthcoming society positionpaper from NASPGAN, the North
American Society for PediatricGI, that's actually going to
recommend that.

(06:54):
So it'll be nice to have thatdocument, but it's good to have
some guidance, because we knowthat we need to check the levels
more often.
But how often do you have tocheck it?
And having that documentationto show the insurance companies
yes, this is actuallyappropriate is very helpful.
I know this is maybe not theexciting kind of research that
you might have wanted to hearabout, but I think on a

(07:17):
practical, day-to-day it reallyhelps us taking better care of
kids.

Speaker 1 (07:21):
This must be so difficult, though, because, like
you said, kids are growing sofast, and the other thing is
that these kids, before they'rediagnosed, are typically smaller
because they have beenstruggling with GI conditions
and not getting the samenutrients, and so they're maybe
didn't grow the way they wouldhave if they didn't have
inflammatory bowel disease.
So is six months enough, like,or is it like, I wonder how if

(07:46):
it should be even more regular,especially as kids are going
into puberty and they're growingso quickly and in sort of
spurts, like it feels like maybeit should be more often, just
based on how fast kids aregrowing and changing.

Speaker 3 (07:57):
I don't know the answer to that question.
I wish I did so.
The standard of care right nowis at the end of induction or
during induction, which is thethird dose or the fourth dose,
which depend which drug might beanywhere up to 16 weeks after
starting the medicine, it'sstandard to check a level
somewhere in there and thenafter.
That is the part that is reallynot clear.
The best study that I'm awareof was by Dr Amit Asa's group in

(08:23):
Israel where they actuallyrandomized, you know, with full
cooperation and you know parents, you know, and kids being
willing to be part of this.
They randomized kids with IBDon their standard therapy to get
a level drawn with every singleinfusion of infliximab.
Compared to now I'm blanking Ithink it was actually adalimumab

(08:45):
, but it was frequently it wasmonthly levels compared to the
kids who were just practicingroutine care and the kids who
had the regular level checks,they did so much better.
There was like no comparison.
The outcomes were better.
So that really does beg thequestion should we actually be
checking it that often?
What I don't know is with howmany of those checks did it wind

(09:06):
up with a change in toast?
I don't know the answer.
They may have published thatdata.
I should look for it.
So I don't know the answer tohow often, but I do know that we
should be checking more oftenthan we currently do.
I personally think six monthsis probably reasonable, although
if someone's not doing well orif they're growing really
quickly, we probably should bechecking more often.

(09:26):
It's a good question.
There's a lot of these types ofquestions that I think we I
wish we knew the answer to,because we could do a better job
of taking care of kids, andthis is the stuff that I want to
know as a physician taking careof kids, but this is also the
stuff that I want to try toanswer as a researcher to help
taking care of kids.

Speaker 1 (09:42):
It's funny you say that because I'm like you know
there's so much about treatingkids with chronic illnesses that
you're like you're alreadybehind the data because they've
already developed this for anadult and like, and you're kind
of having to backtrack andrewind and sort of figure out,
like retroactively, how does itwork in kids?
And I know one of the thingsthat's come up in a conversation

(10:02):
I had with another pediatric GIwas basically like there isn't
a lot of incentive for people toparticipate in clinical trials
for drugs that have already comeout for adults and that you're
already using as pediatric GIs,and about, like, what's the
incentive to get people toparticipate in clinical trials
in order to get the data to beable to say, okay, this is how
it works in kids.
Is there a way to revamp thatsystem instead?

(10:25):
of clinical trials instead ofgoing back to say, okay, we're
going to do a clinical trial.

Speaker 3 (10:29):
Yeah, that system absolutely needs to be revamped.
In the US, congress actuallymandated that.
I forgot what year it was.
They said you know, if a drugcompany is going to do trials on
adults and if there's apediatric application, they have
to do the trial in kids too.
For the most part it doesn'thappen, or they drag their feet.
They submit the paperwork, theydo the trial years later, when

(10:50):
the drug's already available andwe're already using it.
It's not a functioning systemright now.
So there's a move to try andpush this ahead.
So NASP began the NorthAmerican Society I mentioned
before, and EASP again, which isthe European Society, created a
joint policy statement that'scurrently going through the
approval process to actuallymake it very clear what the

(11:13):
criteria should be for doingpediatric trials, to encourage
them to be done earlier.
But it's not just the fact thatthe drug companies don't do the
trials early enough and theyshould do them earlier, but the
other problem is there's allkinds of regulatory barriers.
I don't actually mean it on theregulatory side, but there's
plenty of barriers there.
I actually mean like theregulations that require
barriers in the trial, that arethings in the trial that are

(11:35):
barriers to families enrolling,like, for example, the FDA
currently requires if you'regoing to do a trial of a drug
for Crohn's or colitis, you haveto do a colonoscopy at the
beginning, a colonoscopy at ayear and another one at 12 or 16
weeks, halfway in between orlike in the beginning of the
study.
Like who wants their kidsedated an extra time if it's
not actually medically necessary?

(11:56):
Things like that that we'rearguing that.
That's really not helpful.
It's not necessary for thestudy, so why require it?
Placebos patients randomized toget a drug or get a placebo.
Why would you want your kid tonot be treated when they have a
serious illness?
Thankfully they finally allowstudies without placebos, but
there's still this washoutperiod where you have to be off

(12:18):
of all treatment for two monthsbefore you start the study.
Drug that's just nonsensical.
That's actually not the way wepractice medicine, so why
require it in a trial?
There's all kinds of things likethat that have to change and
there is progress and there iseffort to change all of that to
make it easier to enroll intrials.
And the other thing that Ithink is really encouraging is
there's finally at leastapproval, if not yet action on

(12:41):
this, both in the FDA the USFood and Drug Administration as
well as in EMA the EuropeanMedicine Authority, I think on
both sides to allow real-worlddata for approval, which means
retrospective studies, datathat's already been collected.
And there's groups like theImperial Canal Network that have
been collecting data on tens ofthousands of kids with IBD and

(13:03):
you could use that data to showsee we're already treating with
these kids with this medicineand see it works on a certain
proportion of kids.
So I'm really actuallyencouraged that there's a group
that's currently trying to getone of the medications approved
through the FDA using data fromImprove Care.
Now I'm optimistic it mightactually happen.

(13:25):
So that would be very excitingto use existing data and we
don't have to put kids throughrandomized trials with
unnecessary procedures.

Speaker 1 (13:32):
I guess I'm thinking about the health equity
implications of this as well,because, especially if we're
talking about families that haveto rely on Medicaid to treat
their children with IBD, itseems like maybe perhaps
commercial insurance might be alittle bit more flexible, even
though it's it has its own setof annoyances and problems.
It might be slightly moreflexible as it relates to

(13:54):
allowing for off-label or sortof, you know, allowing kids to
take it when it maybe doesn'thave, you know, the kid's
implication in it.
Yet have you noticed is Isthere a difference between
Medicare Medicaid typicallyMedicaid with kids and
commercial insurance as itrelates to the ability to access
these medicines?

Speaker 3 (14:13):
Yeah, it's interesting and actually not
what you would expect.
So until recently I found thatMedicaid often is easier to get
things approved, like easier toget drugs for kids where they're
being used off-label.
We still have to justify it,you know, like why do we want
this off-label drug when there'sother ones available?
Oh, it's because we alreadytried them and they didn't work
or had adverse reaction orwhatever it was.

(14:34):
But until recently it'sactually been easier to get
things approved in Medicaid thanfrom many private commercial
insurances.
That's all changing and I knowwe weren't really going to talk
politics but by cutting Medicaidat the federal level.
That's going to be a humongousissue because for some reason I

(14:54):
don't think it's well known thatMedicaid funds half of all
children's health care in thecountry and somehow it doesn't
make it into the politicaldiscourse.
But I don't know what's goingto happen to all of these kids
if they lose their health careand health insurance.

Speaker 2 (15:05):
I was just about to say the same thing.
I thought we said we weren'tgoing to talk politics, and then
I was going to jump in and aska question about that, because I
was a single parent when mykids were little and I relied on
LA CHIP, the state Medicaid, inorder to get my kids treatment.

Speaker 3 (15:21):
So yeah, yeah, and the CHIP, the Child Health Plus,
the Children's Special HealthCare goes by different names in
different states, but it notonly helps families low-income
families it also is theinsurance for kids with chronic
diseases, which is who we'retalking about.
So it's not a minor thing tocut it.
I don't know what's going tohappen.
It's very concerning.

Speaker 1 (15:54):
No, and I do wonder if exactly like you just pointed
out, Robin, because it goes by,it's very concerning lie on
this, Even if you havecommercial health insurance.
I have people that I know thathad good commercial health
insurance, but they had a kidwith a very expensive in one
case a fatal disease, and sothey relied on Medicaid as well
as their commercial insurance toreally make sure that they got

(16:15):
the services they need in orderto really take care of their
daughter through her very shortlifespan, but to the best of
their absolute ability.
And so it isn't just low incomefamilies, it's people, it's
kids living with chronicillnesses.
So I think people don'tunderstand that, maybe just
because of the, because we do itin weird ways and because it
varies state to state.
But I think a lot of peoplealso don't understand that you

(16:36):
know Medicaid is tied to states,so it has to do with your state
you live in, and states getmoney from the federal
government, but they alsocontribute their own funds to it
, and so that's why it also canvary state to state.
You know what's available to youas somebody who, as a
specialist provider, sees kidscome to you for second opinions,
third opinions or sometimesjust because you're the best

(16:57):
person close, I'm sure you seekids from out of state.
How does that change things?
Do we want to go down thisrabbit hole?
I just realized I opened a huge.

Speaker 3 (17:06):
It does change things the state.
There's not only differencesstate by state, but it's also
hard to go across state lines.
So in Ann Arbor here inMichigan, we live very close to
the Ohio border.
In fact there's good children'shospitals there.
But there's people who live inToledo, northern Ohio area where
it's closer to come here thango there, but yet it's hard to

(17:26):
get their insurance approved.
Sometimes I'll see them andthey'll approve the visit, but
they won't approve themedication.
There's all kinds of trickybureaucracy and every single
insurance is different and Ihave a very hard time keeping
track of them.
Not only is every insurancedifferent, but they all keep
changing, so it's very hard.
And, speaking of social workers, I don't know how we could
survive without social workers.

(17:47):
They're so important to helpingus do everything we do, because
, I mean, I might know themedical stuff, but there's a lot
of other stuff that is reallybeyond my expertise.
It's very important.

Speaker 1 (18:00):
Well, that's why it's good to have a healthcare team
that includes people like you,as well as all of the other
wonderful people that help tomake sure that people get
treated Well.
Gosh, okay, I think next timewe see you we'll have a cocktail
or a Coke and work on changingthe healthcare system for the
better, but I don't know thatwe'll be able to do that today.
I don't think there's enoughchampagne in my fridge to do

(18:23):
that.

Speaker 3 (18:23):
But there's still.
You know, I think the researchgives me hope that there's ways
to improve things here and there.
So back to the researchquestion, but totally related.
Brad Constant, who is apediatric gastroenterologist in
Colorado, has now done a seriesof studies looking at the impact
of insurance delays and denialsand they are really important

(18:45):
studies just showing that thisisn't without cost and they
actually harm children and leadto worse disease outcomes.
So he published a couple ofstudies this year.
In thinking about this meeting,I was really thinking just
about the research publishedthis past year to try and stay
focused.
But anyway, I'm reallyencouraged that his papers are

(19:07):
out there because now I canreference them when I'm arguing
with insurance companies thatreally know you can't wait six
months before starting thismedicine.
It needs to be started now.
So it's very sobering to seethe data, but very helpful to
have the publication.

Speaker 1 (19:22):
I'm really glad they did that study, you know,
because I know there's a numberof folks that are particularly
active on social media and inpointing out the times where the
health insurance companies andwhat health insurance companies
are being particularlyrecalcitrant in helping families
.
And I know another one is afriend of the show, Brad
Pasternak, and he's also quiteactive on socials talking about

(19:44):
like anytime his families aredenied, like he's on there
saying why is this being deniedat you know, a name insurance
company, and I think it's sadthat that has to be the case,
that, like people are getting soloud on socials because their
families are not being served.
But also, I think, like yousaid, being able to point back
at this research and say, butthis is the implication will be

(20:05):
helpful not only for kids butalso for adults.
I mean, this is it's not likeit's different in adults kids,
like delaying treatment we knowcauses worse outcomes.
Now we have this study to pointto, so I think it's important.

Speaker 3 (20:16):
Yeah, brad Pasternak is really big in this field and
actually he's the senior authoron that paper, so the two brads
together led the study, which isvery nice and very helpful I
think it's important.
We need this information.

Speaker 2 (20:28):
Absolutely, Dr Adler.
The last time we saw each otherin person, which was Congress
over a year ago I can't evenbelieve I'm saying that it's
been that long we were talkingabout prevention and you wanted
to come back on the show to talkmore about that, so can you
share more about prevention andyour thoughts on that and what
the research says?

Speaker 3 (20:49):
Absolutely.
Thank you.
This is something that I'm verypassionate about, I feel is
really important.
I mean, ultimately, what wewould all love to do is prevent
IBD from happening in the firstplace, and I would be happy to
be out of this part of my joband do something else.
I don't think we're there yet,but there is some really
interesting data coming outabout prevention.

(21:09):
There's a long-term study calledthe GEM study it's an
abbreviation G-E-M Genetics,environment and Microbiome and
it's a multicenter study wherethey're taking the recruited
families where one person hasCrohn's disease and they're
studying first-degree familymembers so siblings, children,
parents of that person, you knowcollecting all that stuff and

(21:36):
microbiome, genetics,environmental stuff, diet, all
kinds of other things, and it'snow been going on for several
years.
I don't even remember when itstarted, but the results are
starting to trickle out andthey're publishing more and more
papers on it.
And there's a reallyinteresting paper where they
looked at gut permeability,which is like the lining of our
guts.
Have all these cells that areinterlocked like jigsaw puzzles
that basically keep us insideourselves and then allow the

(21:59):
fluids and whatever out thatneeds to come out.
And when we know this is athing in Crohn's and colitis is,
the gut barrier gets broken andit becomes leaky, and the term
leaky gut has taken on a life ofits own.
But the reality is there is aleakiness to the gut when you
have IBD, and what they've foundis that you can actually detect
.
And so they follow these familymembers over time, expecting

(22:23):
that some of them, being familymembers, will develop IBD.
And then they're going back andlooking at okay, what did we
see ahead of time?
And they found that you canactually see detect changes in
gut permeability before theonset of IBD in people who are
about to or going to develop it,which is fascinating.
And this raises all kinds ofquestions about like, okay, if

(22:45):
you can catch it early enough,can you treat it and turn off
that process?
I think this is so exciting.
We're obviously not there yetwhere this is a practical
reality, but it really gives mehope that someday we'll get
there.
So that's a very excitingfinding that was just published
this year.
So that's the prevention of thedisease itself, and there's

(23:09):
been many other studies thathave looked at.
You know what are risk factorsto develop for developing IBD
related to diet and other.
You know environmentalexposures and I think the bottom
line is we should all be eatinghealthy.
You know Mediterranean diet nottoo much highly refined, highly
processed foods and perhaps youknow you know minimizing

(23:30):
certain chemicals, but none ofthem, I think, have actually
gotten this close to a targeted,both understanding and
potential mechanism for how youcould intervene.
So I'm excited.
So stay tuned for more data.
I'm not part of the study.
I just think it's a cool oneand I really look forward to
hearing more from that group.

Speaker 2 (23:48):
That is exciting, Like it's like you're watching
the gut do its thing.

Speaker 3 (23:55):
I mean, how much more surveillance would we need.
I don't know.
So there was a study years ago.
So using blood samples frommilitary recruits.
Are you familiar with ASCA andANCA, those serologies that you
might hear people check, andpeople with IBD?
People have done all kinds ofstudies trying to see if it can
like predict the diseaseseverity and stuff like that,

(24:16):
and it's really not particularlygood at that.
But those are like antibodiesto like yeasts and other stuff
in the gut that the immunesystem develops.
But it turns out there was astudy of military recruits where
they did blood samples I don'tremember what the frequency was
yearly in these people inhealthy, you know, young people
in the military and then whatthey found.
A similar thing is you couldsee these antibodies go up

(24:37):
before they develop IBD.
So like it's fascinating, thereis stuff there, but the problem
is that one wasn't quitespecific enough to say yeah,
this person will and this personwon't.
But this permeability thingmakes me wonder if we're
actually getting close.
And then the big question comesokay, can you actually prevent
it?
I don't know.

Speaker 1 (24:57):
Yeah, that was going to be.
My question is like okay, sosay, we see somebody that has
increased gut permeability andlike is on the verge, do we
throw some Remicade at them andsee what happens?
Or like, what do we do?

Speaker 3 (25:10):
I don't know the answer to that, but I guess that
is the question, because sothis gets to the other half of
my interest in prevention andsome of this is my research is I
believe we all wanna improvepeople's long-term outcomes and
quality of life and everything.
I feel that one of the bestways of getting at that is to

(25:30):
focus on preventing diseasecomplications.
You know fistulas, strictures,colectomy surgery.
You know need for ostomies andall of those things.
It feels like it's a tangiblething to talk with families
about, like I want to preventthis from happening, but not
only that, it's a measurablething and a thing we can test.

(25:53):
And so what I've been working onis studying strategies of
preventing disease complicationsand what we found now in a
series of several studies isthat if you start treatment
early, if you get the diseaseunder control early, you can
actually prevent perianaldisease.
You can prevent, you know,fistulas, abdominal abscesses.
I think it's so importantbecause some of those

(26:14):
complications, you know there'svarying degrees of severity, but
some people have reallymiserable experiences with those
complications and if we canprevent them from happening in
the first place, that would beawesome.
So that's what I found in mystudies is that early treatment,
particularly with anti-TNFmedicines, can prevent perianal
fistulas.
And I mean you can sort of likeextrapolate how early is early

(26:36):
and perhaps if you startmedicines even before the
disease manifests itself you canprevent everything.
I just don't know yet.
There was an abstract at ECHOthat did look at early
introduction of therapy and Ihonestly I'm sorry, I apologize,
I don't remember which therapydid people who had that gut
primary thing and, like you know, it's an early study, but it

(26:56):
looked encouraging.
So I think we're going to haveto keep an eye on that group and
see what they learn and we canlearn from them.

Speaker 2 (27:03):
In the work that you're doing in prevention of
complications.
What do you find is the biggestchallenge to that?
Do you think it's fear of sideeffects from the drugs?
Do you think it's just notwanting to have to take
medication and try to treat it?
I'm using air quotes here,naturally.

Speaker 3 (27:23):
I think it's everything and everybody has a
different take on all of this.
I think for a lot of families,the fear of starting an immune
suppressing drug is a hugeobstacle to treatment.
For other people that are onboard, I want to get my kid
better right now.
Let's start the drug and thenthe insurance company doesn't
let you.

Speaker 2 (27:43):
Right.

Speaker 3 (27:43):
There are many people who want to take the natural
approach, you know.
Unfortunately, the evidence wehave for diet-based therapies is
really not very strong.
Now we need more studies.
It's true the quality ofevidence isn't as good as a
randomized trial of drugs, butthe best study out there the
DYN-CD study that compared theCD-ED diet to the Mediterranean

(28:06):
diet.
It was actually a beautifullydone randomized study of adults
with Crohn's disease found nosubstantial difference between
the two.
So why use these difficultdiets when healthy eating is
just as good?
But we know healthy eating alonedoesn't stop these diseases.
So as much as I personallywould love to have a diet-based
therapy for my disease and thesediseases, there isn't one

(28:27):
that's practical and effectiveand evidence-based.
But you bring up a veryimportant question, because the
barriers to starting earlytherapy are multiple and many
times it's.
You know, I don't want to be onthese medicines, I don't want
my kid to be on these medicines,and I totally get that.
But having done this now for along time and this isn't just me
, this is my colleagues and youknow the whole IBD family there

(28:50):
was a time when we didn't haveany of these medicines and the
outcomes were far worse.
Yes, and so when you comparethe risk of these medicines and
nothing is without risk thereare risks, but the risks of
these medicines are so smallcompared to the risk of the
disease.
But I understand, not everyonewants to go there right away.

Speaker 2 (29:09):
I do too, but as someone who's lived with it for
25 years and has had multiplesurgeries, and you know I just I
want to get on my soapbox andscream as loud as I can like do
what you can do now, becauseit's going to make it so much
easier, because I I'm in acliche analogy it's not a sprint

(29:29):
, it's a marathon.
I was talking to somebody theother day and I was like you
know, this is never going to end, and I've already been here for
25 years.
I was like you know, it's justnever going to end.

Speaker 1 (29:44):
Yeah, that's so true, but it's also, I think, that
makes it even more important toget the treatment right in the
beginning, because if you getthe disease under control in the
beginning, the long-termoutcomes are so much better and
you don't have to struggle withall of these difficult things
that can happen nipping it inthe bud as quickly as possible,

(30:09):
and that may mean feeling likeyou're going to 10 instead of
starting at one and escalatingup, but I do think even just the
implications, like I don't knowyou're talking about you know
fistulas and abscesses and allthese things and especially for
kiddos, like there should besomething to be said to you
about just the psychologicalimpact of having to be like
hospitalized multiple times, orespecially if you're getting
perianal fistulas, like theamount of touching that happens

(30:32):
and people being in yourbusiness and all these things.
Not that it's hard, easy for anadult to handle it either, but
as a kid, just the like.
You know there's so much atstake here, so it's like I don't
know.
If I was a parent, I think I'dwant to be like yeah, throw
everything at it as quickly aspossible so that we don't have
these implications later on,just because of all of the
trauma, the potential formedical trauma as well as just

(30:53):
physical trauma that can behappening.

Speaker 3 (30:55):
It's so true, and it's not just a physical
discomfort thing.
It affects your body image,your self image, everything.
It's a huge issue.
So I really think that that'strue.
We want to try and preventthese things as best as we can.
Yeah, I think there's also manymisperceptions of these

(31:16):
medicines.
You know people perceive aninjectable medicine or an IV
medicine of being stronger orriskier than an oral medicine,
which you know.
Maybe it used to be that way,but it's definitely not that way
now.
We know that infliximab,adalimumab, ustekinumab,
rizinkinumab I don't know if I'mallowed to use brand names, but
those are so this is likeRemicade and Flektra, humira,

(31:41):
adlima, stellera, skyrizzy.
Those medicines have a muchbetter safety profile than the
JAK inhibitors, which isupetacidinib, rinvox or
tofacidinib, zeljanz or Ozanod,which is Zeposia, which are all
oral medicines and are much moreimmune suppressing than the
injectable medicines.
So I think we have to do abetter job of communicating that

(32:05):
and educating families, andbecause it's sometimes the fear
factor overshadows the actualevidence.

Speaker 1 (32:15):
It kind of goes back to my comment about being bad at
math, you know, like becausethere is that like one in a
whatever chance that somebodycould develop cancer from it.
Like people don't have a reallyhard time understanding that
concept.
They just hear cancer and theygo hang on a second.
I think that is part of whatdoes make some of these
medications the injectables orinfusions challenging for

(32:37):
families is that so many peopleassociate infusions or
injections with chemotherapy andso it feels like this big
escalation in treatment or likethat you're jumping straight to
something that's so bad.
But it's just if you explainwhy, like these are biologics
and they can't be taken throughyour mouth your gut, like, will
destroy it that maybe peoplewould better understand it.
I don't know it, just I feel,like there's just education that

(32:58):
could happen.

Speaker 3 (32:59):
Yeah, I think you're exactly right.
I was looking for it.
I may not find it fast enough,but we did a study years ago
where we made this little gridof these you know like little
people to show the level of risk, to compare side by side risks
of different medications and therisk of the disease without the
medications, which I thoughtthis is the way to show it.
I think we still need that, butI think we need to now update

(33:21):
it with the new medicines.
I'll find it and send it to youif I find it.

Speaker 1 (33:26):
Yeah, but I totally agree, I think you have people
need to have that visual inorder to help them understand it
.
Because, yeah, I mean, if likeone leg of one dude at the
bottom corner is like what isyour risk quote unquote of
getting cancer, then you know itdoes.
It makes people feel a lotbetter, I think.

Speaker 3 (33:41):
Yeah, it's.
I think we can do a better jobof communicating and I think
we've come a long way ofcommunicating.
And I think we've come a longway.
I think we are better than weused to be, but I still think
there's a lot of room forimprovement.
And the other thing is peopleseem to tend to gravitate
towards these new medicines andI'm not saying they're bad
medicines, there's a lot of goodstuff out there but they've
been around for two years.
What's the long-termimplications of that, where
infliximab has been around for25 years?

(34:04):
Now that long 1998.
Yeah, so we know very well theins and outs of those medicines
and the long-term risks becausepeople have been on them for a
decade plus.
Anyway, the idea, I think, ofprevention.
I think there's two pieces ofit the preventing the disease,
which I'm optimistic somedaywe'll get to, and then

(34:24):
preventing the diseasecomplications, which I think we
can do now.
We just need to do a better jobat communicating, getting past
the insurance barriers andgetting started on effective
drugs early.
But I can think of prevention.

Speaker 1 (34:37):
When you were talking about talking to families about
prevention and trying toprevent stuff like abscesses and
fistulas and, you know,unnecessary surgeries, things
like that.
One of the things that we'vesort of we get on a soapbox
about on this show is the factthat, like surgery is an option.
For instance, you know thatlike that needs to perhaps be on
the table a little bit faster,because I think it can be some

(34:57):
of this, this thing that is likewe're trying to prevent it.
We're trying to prevent it, soit makes it feel like it's this
really big bad thing.
When you're talking to familiesabout prevention or getting on
top of this as quickly aspossible, how do you balance
talking about that in a way thatprovides the urgency that you
want to getting these kidstreated as quickly as possible,
with also not making somethinglike an ostomy or a surgery,

(35:21):
something that's now the thingthat shouldn't like, that should
be prevented at all costsbecause it's bad, thus making it
when it does happen, if forsomebody making it a bigger deal
, did that make sense?

Speaker 3 (35:31):
I just again, I was thinking while I was saying it,
that not only made sense, butthat is such an excellent
question and that's thebalancing and the nuance of, I
think, a lot of the decisionmaking.
You know there's definitelytime and place for surgery.
There are times when surgery isabsolutely the right thing.
Sometimes it's not clear what'sthe right thing and surgery is
a reasonable option.

(35:51):
And then there's other timeswhen the medications are totally
worth pursuing because, youknow, hopefully you can avoid
surgery.
I think of surgery likemedicines.
You know there's a risk and abenefit to everything that we do
and like, even like a colectomy, which removing the colon, like
if you have severe ulcerativecolitis and it's not responding
to medications, that is thetreatment is removing the colon.

(36:12):
Years ago we used to justexpect that everyone was going
to need to have their colontaken out because, well, one, we
didn't have such effectivemedicines, but, two, there's
that risk of colon cancer thatcomes up later on, and so it was
just simply the expectation,and so it was just simply the
expectation.
I think we've gotten past that,to the point where I no longer
say that, you know, it's anexpectation that you're going to
everybody's going to need acolectomy someday.

(36:33):
I don't believe that anymore.
But there's some people whereyou know either the medicines
aren't working well, you knowthey're into multiple, or
they're just miserable and theywant to have the surgery and
that's fine.
But just like the medicine,that has risks of side effects
small risks, but real risks.
The surgery has risks and somepeople the wound doesn't heal
well, they have complicationsfrom the surgery.

(36:56):
And there's a significant numberof people that for all the
world they look like they haveulcerative colitis, they have
their colectomy, they think I'mdone, it's over, and then
sometime later they find outthey have Crohn's disease.
It's more common than I thinkanybody wants to believe.
The best data that I can findit's somewhere around 10 or 15%
of people and it could be asmuch as 20%, which is a lot.
So I don't think we can tellpeople have a colectomy, it's a

(37:17):
cure, because maybe it will be,maybe it won't be, we don't know
.
This gets back to that wholeprediction thing, like we're not
really good at predicting.
So some things work, we can,but there's lots of things that
like yeah you know we can have agood guesstimate, but we don't
have a perfect prediction.
So I mean your question of whendo you do surgery?
How do you talk about surgery?
I tend to bring it up veryearly because I want people to

(37:38):
know it is one of the thingsthat they may need someday.
I want it to be just a naturalpart of the conversation.
I don't want to say we're goingto do everything we can do to
prevent surgery.
I also think, especially in thecase of ulcerative colitis, but
probably with other situations,it's really good to bring the
surgeon in early.
On the inpatient side we dothis right away, naturally day
one.
But on the outpatient side Itend to refer people to the

(38:00):
surgeons to meet them, to havethe conversation with them.
That doesn't mean you're goingto have surgery now, but I want
you to hear the pros and cons ofthe different options.
And I'm lucky here because Ihave some excellent surgeons
that I work with and I thinkit's really important on the
medical side of things to have agood team.
But when I have thatconversation with people about
surgery, it's not.
I try to do it early because atthat point it's not urgent and

(38:21):
then it's just part of theconversation.
But the other half of thequestion that you asked about is
ostomies.
Nobody wants an ostomy.
That's just plain and simple.
Nobody wants one.
There are times when an ostomyis necessary to get things to
heal right and when I talk withthem about ostomies, it's
usually as a helper.
It's a temporary thing to tryand help things heal.
Unfortunately, the reality issometimes it becomes a permanent

(38:42):
thing and it's a very hardconversation to have with people
.
But I think it's a very hardconversation to have with people
.
But I think it's important tobe transparent and talk about
this as a possibility, you know,and not high likelihood, but a
possibility.
But that's one that's veryupsetting, especially before you
know what an ostomy is.
It's a hard conversation tohave.

Speaker 2 (39:01):
I absolutely love that you potentially send
families to talk to the surgeonsearly.
I did not have that luxury.
Really, my first surgery, whenI had my subtotal colectomy, did
not have that luxury, and formy second surgery it was kind of
rushed as well.
I did get to meet the surgeonin advance, but I it was like a

(39:22):
meeting to schedule the surgery.
Basically it wasn't like a youknow, let's explore our options.
It was like this is your optionand we're going to schedule the
surgery.
Basically it wasn't like a youknow, let's explore our options.
It was like this is your optionand we're going to schedule the
surgery.
Recently and I've talked aboutthis on the show I proactively
told my GI hey, I don't knowwhat's going on and I want to go
talk to a surgeon.
I want to go talk to a surgeonin advance.
I want the surgeon to look atme, do an exam and tell me what

(39:44):
he sees and what he thinks or heor she sees.
You know what they think andthen I'll come back to you and
talk about what it is, because Ididn't want to be in that
situation again where I washaving to emergently go and see
a surgeon and it'd be somebodythat I don't know.
Yeah, it's much easier to havesurgery with somebody that you
know you've met before you'veseen in the office.

Speaker 3 (40:05):
Exactly, I totally agree.
So we started doing this yearsago because I think there were
two sides to the problem.
One is it's very scary for thefamily to say you need surgery.
Here comes a surgeon, we'redoing this tomorrow, we're doing
this today, but it turns outit's also upsetting to the
surgeon and like to be put inthat position of to have to rush
in and say you kid needssurgery.
I've never met you before, youdon't know who I am, but I'm

(40:27):
doing this.
It puts the surgeon in adifficult position.
So we realized that.
I realized that a long time agoand so when I started working
with the surgeon, so we gottogether as a group and we said
you know, we got to change this.
And so we made up our ownprotocol for ulcerative colitis
and the protocol was day one youmeet the surgeon, whether you
need surgery or not.
That way you've met them.
So a few days later, whatevertime period later, if medically

(40:48):
things aren't going well or ifyou just choose to do surgery,
then you've already had thestart of the conversation.
You've met them, and I thinkit's really.
It's never easy when your kid issick and in the hospital and
might need surgery, but I thinkit makes that difficult
situation a little lessdifficult.
If you've already met thesepeople, it's not a shock
surprise.
I'm sorry you had to go throughthat, but a lot of people go

(41:10):
through that, and that's why weneed to do stuff like this and
that's why I think it's soimportant to collaborate and to
talk, and I think we talked lasttime about the Improved Care
Now Network.
I'm sure you've spoken withother people about how good a
group that is.
It's collaborative.
It's the parents, the kids, thephysician, the GI docs, the
kids, the physician, the GI docs, the nurses, the dieticians,
the social workers, thepsychologists, the surgeons too.

(41:30):
We have surgeons that come tothat meeting now as well and
it's such a collaborative placewhere we talk about things like
this, like how are we going todo this better?
We don't have a cure, but wecan do better at taking care of
kids who have these diseases andwe need something like that.
Well, there's an attempt atsomething like that.
We need something really likethat in the adult world.

Speaker 1 (41:48):
Yes, well, in general there's so much about the
pediatric system that is a bestpractice, I think, for
healthcare.
You know like the fact that alot of times you know pediatric
groups like yours, you know,have people that are integrated
in, like social workers,integrated in dieticians, social
workers, psychologists, thatare just integrated into the
care team and are just likeintroduced very quickly, whereas

(42:09):
adult practices it's like it'svery piecemeal, like you may
have.
You know somebody, rob is justshaking your head.
She's like no, that doesn'thappen.

Speaker 2 (42:17):
I mean, even if it's a, I mean it has to be probably
like the university of Michiganor Mount Sinai or Cedar Sinaiai,
where they have like the largesystems.
But otherwise it's like I havemy GI and I'm going and finding
my own therapist and my own IBDRD registered dietitian and my

(42:37):
own like I'm creating my ownteam in and out of that system
and hopefully they can all talkto each other.
Yeah, it's.

Speaker 3 (42:44):
It's unfortunately not always that a good.
You know, in pediatrics wedon't also.
We also don't always have thatteam and there's a lot of
smaller places that don't reallyhave the resources.
But people really need the teamto have good quality care.

Speaker 1 (42:58):
Well, that, and I've I've joked that we need to have
child life specialists, but foradults, because you know they're
so good about explaining thingsin a way that is understandable
or, like you know, helpingpeople calm down when they're in
situations that are reallystressful, and so I was like we
need child life specialists.

Speaker 3 (43:14):
People are great, we totally need them for adults,
you're right, but sort ofrelated to that.
Mental health is so importantand there still remains a
shortage and still remains astigma and it's still a problem.
And everybody needs mentalhealth care, especially if you
have a chronic disease, and itshould just completely be part
of routine care and it'sunfortunately not still.

Speaker 1 (43:34):
No, a hundred percent agree with you as somebody who,
as a social worker, I a hundredpercent agree that everybody
needs a mental healthprofessional, whether you think
you do or not.
And, frankly, if you don'tthink you do, you probably need
it more than the other person.

Speaker 3 (43:45):
Exactly.
I think that's so true.

Speaker 1 (43:50):
Sadly, you might not know the answer to this question
because this is going to bedefinitely a curveball question
for you, but I'm curious whatlongitudinal research there is
for outcomes for kids that haveto have colectomies really early
.
What do we know about theirprognosis and their lives
long-term?
Say, you had a colect andyou're 10, and now you're 50.
What does that look like, do weknow?

Speaker 3 (44:09):
I don't know if we know.
I do know that over timebecause there's some research in
this area.
I'm not aware of any researchthat looks 40 years later.
I mean there's cross sectionalstudies that look at how long
have you had your disease for.
Okay, this is how you're doing,but actually following people
over time you need.
There's some really goodresearch done in countries that
have national healthcare, likeDenmark, where they have records

(44:30):
on everybody you know over many, many years.
Or you know the province leveldata in Canada, or you know
there's some places that havereally long-term longitudinal
data, but those studies usuallyaren't so granular.
What we do know is over time, ifyou make a J pouch, which is
after removing the colon, takingthe small intestine and making
this little pouch this reservoirthat can hold the poop so you

(44:51):
can hold it in that over timethe J pouch can accommodate to
its new role holding poop and itgrows with the kid, it gets
bigger with them.
Sometimes it grows too much andthen it gets too big and you
get bacterial overgrowth.
Yeah, it's odd, but most peopleyou know over time that does

(45:14):
continue to get better and thequality of life of kids who had
collecting me years ago, isgenerally pretty good Not for
everybody and there are somepeople who have, you know,
ongoing problems with you know,not being able to tell the
difference between gas and stoolor, you know, fecal
incontinence, particularlynighttime.
That stuff for some people canpersist, but I can't tell you
how often, and then I'm apediatrician so there's a limit

(45:37):
to my knowledge.
When you get into adulthood andpregnancy and stuff like that, I
read the papers, I know someinformation about it, but I
don't have actual experiencetaking care of adults through
the entire life cycle.
But I think that's a reallyimportant question because the
medical world has a habit oftalking about long-term outcomes
as like one-year, three-year,five-year outcomes.

(45:59):
These are chronic diseases,thankfully with a low mortality
rate.
So these kids are going to growup to be adults and going to
grow up to be old adults.
And knowing what the long-termimplications are of all of our
decisions and all of ourinterventions I think is really,
really important.
Yeah, I don't know the answerto that.
I wish I did.

Speaker 1 (46:18):
Well, and I'm curious about stuff.
Like you know, talking aboutbody size, if you're a little
10-year-old, where your ostomyis placed might be perfectly
appropriate for you then.
But where your ostomy is placedmight be perfectly appropriate
for you then.
But what happens when you'renow a six foot five adult man
and you know?
And then all of a sudden, where, where, does that, ask me, go?
Do ostomies have a shelf life?

(46:38):
Like, is it?
Like your stoma is only goodfor a certain amount of time and
then it needs to be redone?
Like I boy, I have all thesequestions about ostomies and
stomas.
Now I'm sorry, like you're, Irealize now you've got me so
curious.

Speaker 3 (46:47):
No.
So I know patients.
I have patients who are, youknow, in their early 20s and
have had ostomy since they wereinfants.
So, yeah, the ostomy can lastfor a long, long time.
I don't know if there is such athing as a shelf life, but as
you grow and your body shapechanges, I have seen kids, or
maybe young adults, who did needto have their ostomy revised,
which is another surgery, youknow, because when you were

(47:09):
young it was fine, but now itsits right at the you know, the
crease there.
Maybe the surgeons know moreabout that, maybe there is more
literature on that than I'maware of.
But I do know people who havehad ostomies for a long, long
time and are, you know, you getused to it as part of life, yeah
, but I don't know you know thedecades long story.
I can tell you stories, youknow, of adult friends and

(47:30):
family members who have, youknow, who have lived with IBD
for decades, but it's notsomething that I'm aware.
That's much of the reallylong-term data, but we need it
and I think that's a plug forthe need for more high-quality
research, because five-yearoutcomes are short-term outcomes
when it comes to a long-termdisease.

Speaker 1 (47:51):
And the older I get, the faster five years goes,
that's for sure.

Speaker 2 (47:54):
For sure.

Speaker 1 (47:55):
Robin has bemoaned the fact that ostomy technology
has not changed since her firstostomy, like 20 plus years ago.
This is my thought Is there away to implant and this might be
like metal behind the ostomy,so that you have a magnet that
attaches it instead of having tolike use adherence?
Because there's a lot of peoplethat have that struggle with
the like, you know, theadhesives that they go along

(48:17):
with the ostomies and they getrashes and openings.

Speaker 3 (48:21):
So I don't know the answer to that.
I think it's a reallyinteresting question.
There was something called aCoke pouch that they used to do
years ago, which is a continentostomy.
So they somehow take the iliumand as it gets, as it goes to
the skin, they did some sort ofpleating or folding or whatever
they did, and then you have toput a catheter through self-cast

(48:42):
but through the ostomy to letthe stool come out, which sounds
like a great idea, and maybe itworks for people who had
ostomies for reasons other thanIBD.
But IBD tends to lead toinflammation and problems, which
is why they don't do it verymuch anymore, Although there are
a few adults out there who hada Coke pouch years ago and are
doing fine.

Speaker 1 (49:00):
Is it Coke's like the Coke Brothers?

Speaker 3 (49:02):
K-O-C-K.

Speaker 1 (49:03):
Oh OK.
I was like is this also whereyou you smuggle Coke?
It's somebody's name, butanyway.

Speaker 3 (49:10):
I was at what conference was it?
Nasp, again last year, and theyhave this like a shark tank
come up with your great ideasthing.
And there was a surgeon, SteveMoulton, who presented this idea
of this new kind of ostomy thatyou could somehow like open and
close.
He had this device that hedeveloped, which I thought, wow,

(49:31):
that's so cool if it works, butit made me worry.
The reason the Coke pouches areproblematic is because if
stool's not going through there,it's backing up and it triggers
inflammation in the mucosa andI don't know that you're not
going to wind up with that sameexact problem.
It was a cool idea.
He had an animal model.
It mechanically worked, but youneed to see what happens when
you start doing it in peoplewith Crohn's or colitis or

(49:52):
whatever it is.
So it's a cool idea.
I'm not a surgeon and I don'tknow all of the subtleties of
the mechanics, but I like theidea.

Speaker 1 (50:00):
Listen, we'll keep workshopping this because I
think we can get this.
I am curious, just, jeremy, asyou were perusing the last
year's worth of research onpediatrics, is there any
specific research that you'remost excited about?

Speaker 3 (50:14):
Yeah, I think the things that I'm most hopeful
about are maybe not yetrealities.
I think the things I'm mosthopeful about is there's so and
this is not pediatric research,of course, maybe it's a little
pediatric is there's so many newdrugs with different mechanisms
of action, so if this onedoesn't work you can try that
one, and of course we always goto them in pediatrics even

(50:35):
before they're approved.
But there's so many that I'mgetting hopeful that some of
these kids that have reallydifficult to treat disease are
going to have treatment thatworks.
And I'm hopeful that that groupis working on the policy
statement to hopefully get theFDA to approve these drugs.
You know that would be really,really valuable.
And there was a study at ECHOthat was of a new drug with a

(50:55):
new mechanism of action which isa TL1A antagonist, which is a
tumor TNF-like thing which iseven more targeted than the
anti-TNF drugs and in theory orat least so they say you know
less side effects, which I thinkis.
It's just exciting that there'sso many different drugs out
there.
That it gives me hope that youknow we're going to get better

(51:16):
and better treating these kids.
People talk about precisionmedicine.
I think.
Well, the term has beenco-opted by the geneticists to
say genetic answers everything,and I don't think we're there
yet, but there's some newstudies on a new genetic marker,
hla-dqa105, which is.
It was described by a Britishgroup a couple of years ago and

(51:36):
ICN group just studied it inpediatrics and it works in
pediatrics also and it's amarker of like risk for the
anti-TNF drug not working ordeveloping antiderive antibodies
, and so that was just published.
That was.
A bunch of people in theProof-Your-Noun Network, myself
included, were part of thatstudy.
So I think it's encouraging thatwe have more drugs and we're

(51:57):
getting better at figuring outhow to use the drugs and, of
course, my passion is can we usethem then to prevent the bad
outcomes?
There's so much research outthere.
Every time, a year goes by andI reflect on what's been done.
I get more and more encouragedthat we really are making
progress.
You know, a year goes by and Ireflect on what's been done.
I get more and more encouragedthat we really are making
progress.
And when you look backwards, wewere in such a better place
than we were 5, 10, 20 years ago.

(52:18):
No cure yet, but we're gettingthere.

Speaker 1 (52:20):
That's very cool.
I mean, there's definitely.
It's interesting to hear aboutthose new things, that they're
either new mechanisms of action,like you said, or sort of you
know, looking at these geneticmarkers.
That's so exciting to kind offeel like we have more options,
different options, especially,like you said, if there's some
drugs that, like you have thegenetic marker that shows you're
not going to respond to it,that you have other options
right away.
So that's super cool.

Speaker 2 (52:41):
What is the research that you're most excited to see
come to fruition?
And you are.

Speaker 3 (52:45):
I know you've already said it, but just like a little
recap for everybody, yeah, Ithink the thing that makes me
most excited is if we can getbetter at finding the right
medicine and starting it rightaway or soon enough that we can
prevent all the badness that canhappen and people can have a
normal life and they just haveto take a medicine.
I'm excited that we are gettingcloser to that.

(53:06):
We're not obviously there yet,but I feel hopeful that we are
on the right track.

Speaker 2 (53:11):
I'm excited about that too.
It'd be lovely to be able to dothat.

Speaker 3 (53:13):
Because I think that's the way to improve
quality of life and long-termoutcomes.

Speaker 1 (53:17):
For sure, 100%.
Well, jeremy, thank you so muchfor coming on the show.
I will reiterate again that youare always welcome to be a
guest any, any time.
Thank you so much for sharingsome time with us today and
thank you so much for sharingyour expertise with us as well.
Thank you, everybody else, forlistening and cheers.
Thank you.

Speaker 3 (53:35):
This was a lot of fun .
I really appreciate it.
Thank you.

Speaker 1 (53:37):
If you liked this episode, please rate, review,
subscribe and, even better,share it with your friends.
Cheers.