January 16, 2023 • 26 mins
In the latest episode of Visceral: Listen to Your Gut, Russell D. Cohen, MD, and Emily Dobrez, APN, discuss the ways patients can best manage their Crohn’s disease and ulcerative colitis using the latest available treatments. Listen now to episode 2: The Art and Science of IBD Treatment.
More information on treatment options from Dr. Cohen and Sushila Dalal, MD, is also available in this online video.
Written and produced by Anna Gomberg. Edited and mixed by Mike Collins-Dowden.
The GI Research Foundation was able to produce this podcast with a sponsorship from Takeda.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
The GI Research Foundation was able to produce this podcast with a sponsorship from Takeda.
(00:07):
Thanks to generous donors such as the GI Research Foundation and others, we have been able to
make big breakthroughs in the epidemiology, the diagnosis, and the treatment of not just
Crohn's disease and also the clitis, but other diseases.
Hello and welcome to Visceral, a podcast from the GI Research Foundation. I'm Anna Gomberg and
(00:30):
I work at the Digestive Diseases Center at the University of Chicago Medicine. With me today
are Emily DeBrez, an Advanced Practice Provider, and Russell D. Cohen, Doctor, Russell D. Cohen,
and Professor of Medicine and Director of the IBD Center. They both specialize in the treating
patients with inflammatory bowel disease or Crohn's disease and ulcerative colitis. And we
(00:51):
are here today at our beautiful Hinsdale campus where they see patients. We're here today to
discuss the art and science of treating patients with inflammatory bowel disease. As some of our
listeners may know, there has been an explosion in medical therapies for Crohn's disease and
ulcerative colitis over the last five years. Dr. Cohen, you have been a leader in this field for
over 25 years now? Yeah, pushing 30 pretty soon. Oh my goodness. Well, we've come to the right place
(01:18):
then. Can you briefly describe, very briefly, I know this is a hard task, but the current
landscape of medical therapies for IBD and maybe tell us a little bit about how your practice has
changed with the advent of these new therapies. Sure, Annie. Thank you for having me. You know,
the therapies that we use for years were based on chemotherapy drugs, steroids, and antibiotics or
(01:41):
misalamine, sulfosalazine, which was really used for rheumatoid arthritis. It wasn't until 1998
when the first biological therapy brand name Remicade or Fliximab came through that we had a
dramatic change. And since then, most of the other biologics within the first 10 years after that
were all in the same family, meaning they worked by blocking tumor necrosis factor. And then around
(02:05):
2014, we had a big breakthrough with another novel approach to treating inflammation in a drug called
Antibio. That soon was followed by a drug called Stelara. And more recently, we've had drugs called
Zell Jans, ReInvoke, and SkyRizzy. So each of these newer medicines are most of them are from
(02:28):
complete different families of each other, meaning they affect inflammation by different pathways.
And now the challenge is for us to match the pathway to the patient. Not an easy job. And
certainly it seems like there's a lot of art that would go along with that science, as we said
right up top. How do you do that? How do you decide which therapy is best for which patient?
(02:52):
Well, you know, sometimes we have patients who have more than one inflammatory condition.
So some of the medicines that I mentioned are ones that you may see commercials for,
for other inflammatory conditions, such as rheumatoid arthritis or psoriasis or ankylosing
spondylitis and psoriasis, psoriatic arthritis, things like that. So what we do is we find out from
(03:20):
the patient, you know, do you have any other conditions? And if so, we might match the patient
to the therapy. You know, one of the therapies I didn't mention, which is one look completely
different than what we've been using is also called Zephosia, which is also used for multiple
sclerosis. So in a way, it's almost easier for us when someone does have more than one condition,
(03:40):
because then we automatically will say, well, this is one or two of the possible drugs we'd use.
But not everyone does. And then there are other characteristics. Emily probably is very familiar
with some of the decisions that we make when sitting in front of a patient choosing therapies.
Yeah, absolutely. It's definitely always a joint decision between us as the providers and
(04:02):
also talking to the patients about what type of medication they would prefer to be on or
what they think they would be most compliant taking, whether it's a pill or a shot or going
in for an infusion. Yes, sometimes you'd be surprised because the very patient who you think
would say, well, I want to take a pill, Mike Turner and say, I want to get an IV infusion.
(04:24):
We're surprised a lot of the times. I can believe it. Because what do you mean when you say joint
decision making? So I think that Dr. Cohen and I, we look at the drugs that we have in front of us
and what would be good options for a patient. But sometimes there's more than one good option. So
(04:44):
we try to limit, you know, kind of bring it down to what would be good options for the patient. If
there's more than one good option, usually we present them with a few choices and let them know
the positives and negatives of each option and try to make that decision together.
What do you do when a patient doesn't do well on a medication?
(05:06):
Well, that's a good question. So the first thing is just getting to the bottom of it. Why are they
not doing well on the medication? Is it the actual medication that they're not doing well on? Do they
have an infection that's complicating the picture? So we kind of look at a bunch of different things
of is this really the IBD that's active that's not responding to therapy or is there something else
(05:28):
going on here? Do you have any other considerations? Like what is how does insurance play into what
medications you suggest? Well, you know, insurance does play a big role because the medications
generally due to their cost really need to be approved by the patient's insurance for them to
receive it. It's not like they're going to be able to pay for this out of pocket. I mean, some of
(05:51):
these medicines are tens of thousands of dollars each dose. So there are some easy rules. For example,
Medicare pays for intravenous medicines and for injections that are administered by a health care
professional. Outside of that, unless the patient has a Medicare Part D plan, which is a drug plan,
(06:16):
which I strongly encourage people to do if they're on Medicare, it can be quite challenging to get
them to medicine and you may choose a medicine that you know Medicare will cover. Medicaid, for
example, also has preferred medications and we would lean towards those. For patients with
(06:37):
private insurance, often we don't know off the top of our head what will happen because things
contract and changes perhaps each year, maybe even more so. So often, as Emily mentioned, we'll talk
with the patients and do our plan A if your insurance approves it, but if not plan B and plan C and go
(06:58):
from there. How long does that process take? Usually for insurances, they make a determination
within 14 days of submitting for drug coverage. However, a lot of times we have to appeal that,
which takes longer. Yeah, so luckily in the state of Illinois, there are some laws that
(07:19):
have recently passed that require the insurers to have electronic submission and quick turn
around either in an urgent case or less urgent case, but that only applies to certain patient
insurance types. If the federal government is talking about passing similar legislation, but
(07:42):
insurance is actually determined at the state level, the insurance laws. So if patients have
federal insurance, Medicare, Medicaid, then that will be covered by the federal laws. And then if
they have state insurance, it will be by the state laws. So it is very complex and very confusing to
(08:06):
many of the doctors that Emily and I train are from other countries, and they're completely befuddled
by this mechanism. And it's impossible to understand how patients would be able to get through this.
Completely. I mean, we see that at the IBD Center all the time with patients that are
trying to and unsuccessful at initially getting on the medication that they need,
(08:29):
and we need to support them through those challenges. Luckily, for patients who have
private insurance, meaning they're not Medicare or Medicaid or military insurance,
the most, if not all, of the biotech and pharma companies do have patient assistant plans.
Some are needs-based, but some are not. And it's very, very important. And this is just beyond
(08:54):
inflammatory bowel disease for the providers and the patients to go to the name of the drug.com website,
and they will list their plans. The patients have to sign up for them, their free plans. And it's
really important to do this because they don't just provide assistance for medication. Emily is
(09:16):
so very aware of some of the other things that these assistance plans provide. Right. So a lot of
them provide information about the medication that you're going to be taking. They provide nursing
services so that if you have a question regarding your medication that you can call them any day of
the week and ask your question and someone gets back to you right away. A lot of these programs
also offer injection training, which is very valuable, especially if you don't live close to
(09:40):
your doctor's office. Like, we see a lot of patients that are in different states.
What's injection training? What does that mean? That sounds pretty serious. What is that involved?
Yeah. So some of the medications we have are delivered via what we call a self-injectable. So
it's an injection that you give yourself. And so obviously that's pretty scary for a lot of our
(10:08):
patients, especially the first time that they are doing this. So, you know, in our practice, a lot of
times I have these patients come in so that I can walk beside them to teach them how to do it. But
you know, it's really great that these
pharma programs also have assistance to train the patients on how to give themselves these
(10:32):
injections and make them comfortable doing it. Absolutely. It's, I mean, a big step from not,
from, for many patients, I would assume that would be the first time they had ever given themselves
either an auto-injectable or a syringe and used that. That would, I would imagine, be a big barrier
for some patients. And you mentioned that some patients prefer to have an inject, have it do an
(10:53):
injection. Some prefer to take a pill, some prefer to get an infusion. What does that, like,
do they elucidate why those preferences are important to them? And how do you, how do you
suss that out? Well, so often what happens if we say, well, here are your options. Let's say, for
argument's sake, the patients didn't have another inflammatory condition. So kind of the sky's the
(11:15):
limit for, for, and we say we didn't take a pill once a day, a shot every two weeks, an IV. And
often the patients will say, for example, I travel a lot for my job. So I can't be,
I can't have to rely on getting intravenous. I need to do a medicine that I can give myself.
Or patients might say, I will absolutely not give myself a shot. I'm needle phobic,
(11:38):
which sometimes can lead also to the IV drug issue problem. But then I just tell them to
wear a blindfold. But, or you would think people just want to pill a day and they say, I can't,
I won't be able to remember to take a pill a day. They're like, I know, I don't trust myself.
That's me. I would absolutely be the person who could remember to take a pill every day.
I'm the same, actually. Yeah, I would, I could see if we could get it on a schedule,
(12:00):
that would be so much better. See, I'm different. I take my pill every day.
That's why you're a doctor. That's right. Exactly. You have to have, you have to have a routine
that you follow when you don't follow it. Yeah. I know, a lot less confidence in you,
if you said, you know, I don't know how I could possibly remember to take a pill every day. That's,
that's for us. That's not for our super, super docs. So that, so all of that is really part of
(12:26):
that conversation that you have with those patients in clinic after you figure out
what medication might be the best option for them. Well, sure. Like, you know,
you had asked Emily before about, you know, the idea about, you know, this is shared decision
making. Yeah. And then this is the point, okay, it is, we are with you. We are with the patient.
We're going through this journey with you. So let's do this together. This is what's going on.
(12:52):
Here are the, here are the directions that we think you should take and here's why,
and we want to want them to be participated. We don't want to be talking at patients. We want
to be talking with patients and it's very important to do that, especially for people
of chronic relapsing conditions. This isn't a one and done, unless you're very bad,
and it is a one and done, but this isn't a one and done. So are all of these patients that are
(13:17):
beginning these new medical therapies, are they going to be on those for the rest of their lives,
or is this something that changes over time? Unfortunately, with Crohn's and all sort of
colitis, we haven't found a cure yet. So the medications that we keep patients on are made
to keep patients in remission. And to do that, we have to keep patients on therapy. And a lot of
(13:38):
patients are concerned that, oh, I'm going to be on this therapy forever. Well, you know, there's
forever is a long time. So we never say forever and things change based on how their disease
progresses, based on side effects. But if it's working for a patient, for the most part, we
want them to stay on their therapy. Yeah, you know, I think it's important to realize that
(14:02):
thanks to generous donors such as the GI Research Foundation and others, we have been able to make
big breakthroughs in the epidemiology, the diagnosis, and the treatment of not just Crohn's
disease and all sort of colitis, but other diseases. So we are very, very optimistic that we will
(14:23):
have a day when patients will not need to be on medicines, or perhaps maybe not all patients will
be named to be on medicines, but we're not there yet. So I say to the patients, you know, we see you
a few times a year sooner, more frequently if you need to be, but we'll reassess each year and see,
because things do come out, things do change. A lot of the newer therapies are safer than the
(14:48):
older therapies, the older therapies are chemotherapy. So transitioning patients from less safe to safer
medicines, that's a step in the right direction. And as we move forward, yeah, as we move forward,
we will likely have situations where we'll know who you can stop therapy on and who you can't.
(15:09):
We're not there yet. You mentioned safety. How are these new medications, which are, you know,
brand new, how are they safer than the old ones? So the older medicines that we use for
first of all, corticosteroids, prednisone, while it works well short term is not a long term plan,
and it has a laundry list of side effects that are really unacceptable. Many of the other older
(15:31):
medicines that I mentioned, we actually borrowed from oncologists, they're used for genie leukemia.
And while we are very confident in these medicines in our hands, there's still our medicines that
affect the bone marrow and how you make other cells, and they do have cancer risks. The newer
therapies, particularly the biologics, which is anything given IV or shot as a biologic,
(15:52):
are essentially harmless unless you're allergic to them. There are some rare risks of infection
with some of them, but for the most part, they're fine. We let women get pregnant on them. We
use them in children who need them for their therapies. We let women nurse on them. That's
how safe the majority of patients experience the biologics, and that is leaps and bounds above
(16:18):
the older medicines. That's great. And like, are there, I would assume that the risks of not
getting treatment are far worse than the risks that any side effect that might be associated
with these medications for the most part, for most patients. Is that accurate? Definitely accurate,
especially we see that patients that are in a hyper inflammatory state are often more likely
(16:43):
to have blood clots and things like that happen as well. We see in Crohn's disease, if we don't
manage inflammation, that people can get stricturing disease, which can cause bowel obstructions and
emergency surgery. So being on therapy is definitely safer for our patients, especially
as Dr. Cohen mentioned, of how safe our therapies really are these days. You know, the analogy is
(17:07):
why do you change oil in your car? Why don't you just wait for the engine to seize up? It's so much
easier. This sounds like a question my husband asked me. Exactly. Well, one of the car
commercials just have a thing that says, you can pay me now or you can pay me later. So the point is
that when people are not very sick or just to keep them well, it's so much easier and the
(17:28):
medicines work better. They're often one medicine, not a whole bunch of medicines. They're safer
medicines. Then later on, when all of a sudden it's a fire alarm and you have to drop everything
and you have to do things. And you know, sometimes people may not be in the location where there's
the best medical care or the most advanced things or they if they do need surgery, which is a big
(17:50):
part of treating some patients with IBD, they're getting at the surgeon who's on the night call
rather than the surgeon they want with the staff that they want doing the procedure that they want
too. So while certain things are scary about being sick and facing surgery, it's better to do it
along with your team of specialists, medical and surgical specialists. That way, if you do need
(18:13):
advanced therapies or surgery, it can be done when it should be done rather than an emergency.
What about patients that want to try something along with their therapy? Like what they think
that maybe they've been doing yoga and that really helps with their IBD symptoms or they've tried
(18:33):
to, you know, they've developed a diet that seems to work with them. How do you work with them, Emily,
on incorporating some of those complementary practices into their treatment? Is that something
that you encourage, something that you try to dissuade them from doing or what do you do when
patients come with you at that? Personally, I think yoga is always a good idea. So I think that
(18:53):
especially with inflammatory bowel disease, a lot of our patients find that stress is a trigger for
them. So you spoke about yoga before, a lot of patients find that if they can implement things
into their daily life that reduces their anxiety and their stress, that they also find that it's
easier to keep their IBD in remission. So I encourage those things and we try to treat a patient as a
(19:17):
whole and look at them holistically. So I think that those types of things are great. If a patient
has a diet that works better for them or that they feel better on, like a lot of our patients say,
if I have dairy, I feel terrible, or a lot of our patients do have structuring disease. So eating a
high fiber diet really is not a good idea for them. So those things we can work through.
(19:41):
You know, at this point, being on a diet and wanting to call that your only therapy,
if your Crohn's are all sort of colitis, doesn't usually work well, but as a compliment to therapy,
I'm totally okay with that. How do you keep patients taking that pill every day or that shot
(20:03):
every two weeks? I mean, that must come down to you, Emily, in your clinic, in your, you know,
I've had a few patients in the last few weeks tell me that I sound a lot like their mother.
Believe that. Usually they're about 18 year old boys with their mom sitting right next to them.
I try to talk to them about thinking forward. So thinking forward about how we're going to
(20:29):
remember it because remembering to take a pill is hard. Remembering to take an injection every
eight weeks is hard. So you got to plan ahead. And I try to tell my patients this, especially my
younger patients that you need to get out your phone, you need to set a reminder in your phone,
you know, at the time of this injection for your next injection so that this doesn't fall
through the cracks. And then with our younger patients, it's really trying to give them the
(20:55):
power to take control of their own disease and the management of their disease, because they're
so used to having their parents do this for them. And then they come to our adult practice
and we totally flip the switch on them and say, you know, this is your body, your health, you
are an adult now, and we need to make baby steps to get you there that you can take responsibility
(21:17):
for these things on your own. I'm sure part of that might involve talking to those parents and
helping them step back as a parent myself. I can't, I mean, picturing my, you know, child
going off to college and do parents play a role in that also? They do. And a lot of them are
hesitant to take a step back. And I, and I kind of tell them this doesn't have to be
a stripping the bandit off process where we expect this to happen overnight. Usually I say, you
(21:44):
know, here are goals for this visit. By next visit, I want Michael to remember to take his
medication on his own and to set the alarm on his phone. The next visit, maybe we talk about,
I want Michael to send me the myterm messages himself instead of mom sending them. So it's
definitely a process. What advice do the two of you have for patients living with Crohn's disease
(22:08):
and also to have colitis that are not yet in remission, that are still living with symptoms
every day, that are still feeling terrible? What would you tell them? Well, the first thing is,
let your provider know. I mean, I really, I challenge myself, I want to make everybody
perfect. And I say to the patients, I don't just say, are you feeling better? So are you perfect?
Because I want to be perfect. And feeling better, you know, you can go from going to the bathroom
(22:29):
20 times a day to 10 times a day and say, you're better? Like, yeah, yeah, you're a great doctor.
But no, I'm not, you're still going to the bathroom 10 times a day. Now, it may not be able to fix
everything, but certainly let your, let your healthcare team know. And if it turns out that
you aren't able to take the medicine either, because you don't want to give yourself shots,
you can't let them know, let them know where we're on your side. Okay, we're part of your team. We're
(22:51):
not, we're not the opposition. We're part of your team. Our goal is you. Our goal is to get you to
perfection. We're as close to it as perfect. And don't forget, sometimes patients need surgery.
I'm not a surgeon, surgery is not a bad thing. If you need surgery, you want surgery.
That's great advice. Thank you, Dr. Cohen. Just to kind of reiterate what Dr. Cohen said,
(23:12):
I think that communication is key. We can't fix something we don't know about. So talking to
your provider is, you know, the number one step at getting yourself in the right direction and,
and not being afraid to make a change. I see a lot of our patients kind of drag their feet at
switching therapies because they're worried about side effects. And the reality is, is that most
(23:34):
of the medications that we use these days are very, very safe and have great safety profiles.
And I try to help our patients understand this by telling them, you know, I would not lose sleep
if any of my family members were on any of the medications that we use for all sort of clitising
Crohn's. That's wonderful. That's great to hear. And as a parent, as a sister, as a
(23:56):
daughter and all of these things, it, that is the most important question. I think you always
are wondering, how will this affect my loved ones? Thank you both so much for taking this time.
Is there anything in the future that you are excited about with regard to the treatment of
Crohn's disease and all sorts of colitis? Is there anything coming, coming soon that we should be
(24:18):
looking for or that we anticipate will be the next frontier in research treatment for these
really important conditions? Well, sure, you know, on the medical side is personalized medicine,
where we're going to hopefully be able to know soon. I listed a whole bunch of different families
of medicines that if you need medicine, what's the best approach for you? What's the one that's
going to work the best and give it to you first rather than fifth? Because the end of your trial
(24:41):
and error to that on the surgical side, they're actually, the surgeons are always innovating in
ways to be have better outcomes with surgery and to prevent Crohn's from coming back patients
with those sort of colitis. They've done really to perfected surgery for many years and even more
advances on giving them normal lives as well too. And there actually are some very interesting
(25:05):
studies looking at why do people get Crohn's and colitis and maybe there is a way that we can adjust
something in their lives so they don't get it at all. Wow, that's the prevention is the best is
better than treatment angle. Well, you know, it's not really they're not really felt to be
infectious diseases. And you remember, you need your immune system, your immune system is supposed
(25:25):
to protect you from infections. The problem is that the immune system is is is misbehaving.
It's acting as if you you were have an infection and trying to get rid of it and it's trying to
protect you. So we just have to figure out how to get the immune system back, not to recognize
the new you as the enemy. Sounds wonderful. Thank you both so much for your time. This is
(25:47):
wonderful. I will look forward to talking to you more and hearing more about these advances as
they come to fruition. Right. Thank you so much, Annie. And for the Gastrointestinal Research Foundation,
really appreciate them funding this very important initiative. Yep. Thanks for having us, Annie.
(26:29):
To learn more about how to support the research that treats, cures and prevents digestive diseases.
The GI Research Foundation was able to produce this podcast with a sponsorship from Takeda.
(00:07):
Thanks to generous donors such as the GI Research Foundation and others, we have been able to
make big breakthroughs in the epidemiology, the diagnosis, and the treatment of not just
Crohn's disease and also the clitis, but other diseases.
Hello and welcome to Visceral, a podcast from the GI Research Foundation. I'm Anna Gomberg and
(00:30):
I work at the Digestive Diseases Center at the University of Chicago Medicine. With me today
are Emily DeBrez, an Advanced Practice Provider, and Russell D. Cohen, Doctor, Russell D. Cohen,
and Professor of Medicine and Director of the IBD Center. They both specialize in the treating
patients with inflammatory bowel disease or Crohn's disease and ulcerative colitis. And we
(00:51):
are here today at our beautiful Hinsdale campus where they see patients. We're here today to
discuss the art and science of treating patients with inflammatory bowel disease. As some of our
listeners may know, there has been an explosion in medical therapies for Crohn's disease and
ulcerative colitis over the last five years. Dr. Cohen, you have been a leader in this field for
over 25 years now? Yeah, pushing 30 pretty soon. Oh my goodness. Well, we've come to the right place
(01:18):
then. Can you briefly describe, very briefly, I know this is a hard task, but the current
landscape of medical therapies for IBD and maybe tell us a little bit about how your practice has
changed with the advent of these new therapies. Sure, Annie. Thank you for having me. You know,
the therapies that we use for years were based on chemotherapy drugs, steroids, and antibiotics or
(01:41):
misalamine, sulfosalazine, which was really used for rheumatoid arthritis. It wasn't until 1998
when the first biological therapy brand name Remicade or Fliximab came through that we had a
dramatic change. And since then, most of the other biologics within the first 10 years after that
were all in the same family, meaning they worked by blocking tumor necrosis factor. And then around
(02:05):
2014, we had a big breakthrough with another novel approach to treating inflammation in a drug called
Antibio. That soon was followed by a drug called Stelara. And more recently, we've had drugs called
Zell Jans, ReInvoke, and SkyRizzy. So each of these newer medicines are most of them are from
(02:28):
complete different families of each other, meaning they affect inflammation by different pathways.
And now the challenge is for us to match the pathway to the patient. Not an easy job. And
certainly it seems like there's a lot of art that would go along with that science, as we said
right up top. How do you do that? How do you decide which therapy is best for which patient?
(02:52):
Well, you know, sometimes we have patients who have more than one inflammatory condition.
So some of the medicines that I mentioned are ones that you may see commercials for,
for other inflammatory conditions, such as rheumatoid arthritis or psoriasis or ankylosing
spondylitis and psoriasis, psoriatic arthritis, things like that. So what we do is we find out from
(03:20):
the patient, you know, do you have any other conditions? And if so, we might match the patient
to the therapy. You know, one of the therapies I didn't mention, which is one look completely
different than what we've been using is also called Zephosia, which is also used for multiple
sclerosis. So in a way, it's almost easier for us when someone does have more than one condition,
(03:40):
because then we automatically will say, well, this is one or two of the possible drugs we'd use.
But not everyone does. And then there are other characteristics. Emily probably is very familiar
with some of the decisions that we make when sitting in front of a patient choosing therapies.
Yeah, absolutely. It's definitely always a joint decision between us as the providers and
(04:02):
also talking to the patients about what type of medication they would prefer to be on or
what they think they would be most compliant taking, whether it's a pill or a shot or going
in for an infusion. Yes, sometimes you'd be surprised because the very patient who you think
would say, well, I want to take a pill, Mike Turner and say, I want to get an IV infusion.
(04:24):
We're surprised a lot of the times. I can believe it. Because what do you mean when you say joint
decision making? So I think that Dr. Cohen and I, we look at the drugs that we have in front of us
and what would be good options for a patient. But sometimes there's more than one good option. So
(04:44):
we try to limit, you know, kind of bring it down to what would be good options for the patient. If
there's more than one good option, usually we present them with a few choices and let them know
the positives and negatives of each option and try to make that decision together.
What do you do when a patient doesn't do well on a medication?
(05:06):
Well, that's a good question. So the first thing is just getting to the bottom of it. Why are they
not doing well on the medication? Is it the actual medication that they're not doing well on? Do they
have an infection that's complicating the picture? So we kind of look at a bunch of different things
of is this really the IBD that's active that's not responding to therapy or is there something else
(05:28):
going on here? Do you have any other considerations? Like what is how does insurance play into what
medications you suggest? Well, you know, insurance does play a big role because the medications
generally due to their cost really need to be approved by the patient's insurance for them to
receive it. It's not like they're going to be able to pay for this out of pocket. I mean, some of
(05:51):
these medicines are tens of thousands of dollars each dose. So there are some easy rules. For example,
Medicare pays for intravenous medicines and for injections that are administered by a health care
professional. Outside of that, unless the patient has a Medicare Part D plan, which is a drug plan,
(06:16):
which I strongly encourage people to do if they're on Medicare, it can be quite challenging to get
them to medicine and you may choose a medicine that you know Medicare will cover. Medicaid, for
example, also has preferred medications and we would lean towards those. For patients with
(06:37):
private insurance, often we don't know off the top of our head what will happen because things
contract and changes perhaps each year, maybe even more so. So often, as Emily mentioned, we'll talk
with the patients and do our plan A if your insurance approves it, but if not plan B and plan C and go
(06:58):
from there. How long does that process take? Usually for insurances, they make a determination
within 14 days of submitting for drug coverage. However, a lot of times we have to appeal that,
which takes longer. Yeah, so luckily in the state of Illinois, there are some laws that
(07:19):
have recently passed that require the insurers to have electronic submission and quick turn
around either in an urgent case or less urgent case, but that only applies to certain patient
insurance types. If the federal government is talking about passing similar legislation, but
(07:42):
insurance is actually determined at the state level, the insurance laws. So if patients have
federal insurance, Medicare, Medicaid, then that will be covered by the federal laws. And then if
they have state insurance, it will be by the state laws. So it is very complex and very confusing to
(08:06):
many of the doctors that Emily and I train are from other countries, and they're completely befuddled
by this mechanism. And it's impossible to understand how patients would be able to get through this.
Completely. I mean, we see that at the IBD Center all the time with patients that are
trying to and unsuccessful at initially getting on the medication that they need,
(08:29):
and we need to support them through those challenges. Luckily, for patients who have
private insurance, meaning they're not Medicare or Medicaid or military insurance,
the most, if not all, of the biotech and pharma companies do have patient assistant plans.
Some are needs-based, but some are not. And it's very, very important. And this is just beyond
(08:54):
inflammatory bowel disease for the providers and the patients to go to the name of the drug.com website,
and they will list their plans. The patients have to sign up for them, their free plans. And it's
really important to do this because they don't just provide assistance for medication. Emily is
(09:16):
so very aware of some of the other things that these assistance plans provide. Right. So a lot of
them provide information about the medication that you're going to be taking. They provide nursing
services so that if you have a question regarding your medication that you can call them any day of
the week and ask your question and someone gets back to you right away. A lot of these programs
also offer injection training, which is very valuable, especially if you don't live close to
(09:40):
your doctor's office. Like, we see a lot of patients that are in different states.
What's injection training? What does that mean? That sounds pretty serious. What is that involved?
Yeah. So some of the medications we have are delivered via what we call a self-injectable. So
it's an injection that you give yourself. And so obviously that's pretty scary for a lot of our
(10:08):
patients, especially the first time that they are doing this. So, you know, in our practice, a lot of
times I have these patients come in so that I can walk beside them to teach them how to do it. But
you know, it's really great that these
pharma programs also have assistance to train the patients on how to give themselves these
(10:32):
injections and make them comfortable doing it. Absolutely. It's, I mean, a big step from not,
from, for many patients, I would assume that would be the first time they had ever given themselves
either an auto-injectable or a syringe and used that. That would, I would imagine, be a big barrier
for some patients. And you mentioned that some patients prefer to have an inject, have it do an
(10:53):
injection. Some prefer to take a pill, some prefer to get an infusion. What does that, like,
do they elucidate why those preferences are important to them? And how do you, how do you
suss that out? Well, so often what happens if we say, well, here are your options. Let's say, for
argument's sake, the patients didn't have another inflammatory condition. So kind of the sky's the
(11:15):
limit for, for, and we say we didn't take a pill once a day, a shot every two weeks, an IV. And
often the patients will say, for example, I travel a lot for my job. So I can't be,
I can't have to rely on getting intravenous. I need to do a medicine that I can give myself.
Or patients might say, I will absolutely not give myself a shot. I'm needle phobic,
(11:38):
which sometimes can lead also to the IV drug issue problem. But then I just tell them to
wear a blindfold. But, or you would think people just want to pill a day and they say, I can't,
I won't be able to remember to take a pill a day. They're like, I know, I don't trust myself.
That's me. I would absolutely be the person who could remember to take a pill every day.
I'm the same, actually. Yeah, I would, I could see if we could get it on a schedule,
(12:00):
that would be so much better. See, I'm different. I take my pill every day.
That's why you're a doctor. That's right. Exactly. You have to have, you have to have a routine
that you follow when you don't follow it. Yeah. I know, a lot less confidence in you,
if you said, you know, I don't know how I could possibly remember to take a pill every day. That's,
that's for us. That's not for our super, super docs. So that, so all of that is really part of
(12:26):
that conversation that you have with those patients in clinic after you figure out
what medication might be the best option for them. Well, sure. Like, you know,
you had asked Emily before about, you know, the idea about, you know, this is shared decision
making. Yeah. And then this is the point, okay, it is, we are with you. We are with the patient.
We're going through this journey with you. So let's do this together. This is what's going on.
(12:52):
Here are the, here are the directions that we think you should take and here's why,
and we want to want them to be participated. We don't want to be talking at patients. We want
to be talking with patients and it's very important to do that, especially for people
of chronic relapsing conditions. This isn't a one and done, unless you're very bad,
and it is a one and done, but this isn't a one and done. So are all of these patients that are
(13:17):
beginning these new medical therapies, are they going to be on those for the rest of their lives,
or is this something that changes over time? Unfortunately, with Crohn's and all sort of
colitis, we haven't found a cure yet. So the medications that we keep patients on are made
to keep patients in remission. And to do that, we have to keep patients on therapy. And a lot of
(13:38):
patients are concerned that, oh, I'm going to be on this therapy forever. Well, you know, there's
forever is a long time. So we never say forever and things change based on how their disease
progresses, based on side effects. But if it's working for a patient, for the most part, we
want them to stay on their therapy. Yeah, you know, I think it's important to realize that
(14:02):
thanks to generous donors such as the GI Research Foundation and others, we have been able to make
big breakthroughs in the epidemiology, the diagnosis, and the treatment of not just Crohn's
disease and all sort of colitis, but other diseases. So we are very, very optimistic that we will
(14:23):
have a day when patients will not need to be on medicines, or perhaps maybe not all patients will
be named to be on medicines, but we're not there yet. So I say to the patients, you know, we see you
a few times a year sooner, more frequently if you need to be, but we'll reassess each year and see,
because things do come out, things do change. A lot of the newer therapies are safer than the
(14:48):
older therapies, the older therapies are chemotherapy. So transitioning patients from less safe to safer
medicines, that's a step in the right direction. And as we move forward, yeah, as we move forward,
we will likely have situations where we'll know who you can stop therapy on and who you can't.
(15:09):
We're not there yet. You mentioned safety. How are these new medications, which are, you know,
brand new, how are they safer than the old ones? So the older medicines that we use for
first of all, corticosteroids, prednisone, while it works well short term is not a long term plan,
and it has a laundry list of side effects that are really unacceptable. Many of the other older
(15:31):
medicines that I mentioned, we actually borrowed from oncologists, they're used for genie leukemia.
And while we are very confident in these medicines in our hands, there's still our medicines that
affect the bone marrow and how you make other cells, and they do have cancer risks. The newer
therapies, particularly the biologics, which is anything given IV or shot as a biologic,
(15:52):
are essentially harmless unless you're allergic to them. There are some rare risks of infection
with some of them, but for the most part, they're fine. We let women get pregnant on them. We
use them in children who need them for their therapies. We let women nurse on them. That's
how safe the majority of patients experience the biologics, and that is leaps and bounds above
(16:18):
the older medicines. That's great. And like, are there, I would assume that the risks of not
getting treatment are far worse than the risks that any side effect that might be associated
with these medications for the most part, for most patients. Is that accurate? Definitely accurate,
especially we see that patients that are in a hyper inflammatory state are often more likely
(16:43):
to have blood clots and things like that happen as well. We see in Crohn's disease, if we don't
manage inflammation, that people can get stricturing disease, which can cause bowel obstructions and
emergency surgery. So being on therapy is definitely safer for our patients, especially
as Dr. Cohen mentioned, of how safe our therapies really are these days. You know, the analogy is
(17:07):
why do you change oil in your car? Why don't you just wait for the engine to seize up? It's so much
easier. This sounds like a question my husband asked me. Exactly. Well, one of the car
commercials just have a thing that says, you can pay me now or you can pay me later. So the point is
that when people are not very sick or just to keep them well, it's so much easier and the
(17:28):
medicines work better. They're often one medicine, not a whole bunch of medicines. They're safer
medicines. Then later on, when all of a sudden it's a fire alarm and you have to drop everything
and you have to do things. And you know, sometimes people may not be in the location where there's
the best medical care or the most advanced things or they if they do need surgery, which is a big
(17:50):
part of treating some patients with IBD, they're getting at the surgeon who's on the night call
rather than the surgeon they want with the staff that they want doing the procedure that they want
too. So while certain things are scary about being sick and facing surgery, it's better to do it
along with your team of specialists, medical and surgical specialists. That way, if you do need
(18:13):
advanced therapies or surgery, it can be done when it should be done rather than an emergency.
What about patients that want to try something along with their therapy? Like what they think
that maybe they've been doing yoga and that really helps with their IBD symptoms or they've tried
(18:33):
to, you know, they've developed a diet that seems to work with them. How do you work with them, Emily,
on incorporating some of those complementary practices into their treatment? Is that something
that you encourage, something that you try to dissuade them from doing or what do you do when
patients come with you at that? Personally, I think yoga is always a good idea. So I think that
(18:53):
especially with inflammatory bowel disease, a lot of our patients find that stress is a trigger for
them. So you spoke about yoga before, a lot of patients find that if they can implement things
into their daily life that reduces their anxiety and their stress, that they also find that it's
easier to keep their IBD in remission. So I encourage those things and we try to treat a patient as a
(19:17):
whole and look at them holistically. So I think that those types of things are great. If a patient
has a diet that works better for them or that they feel better on, like a lot of our patients say,
if I have dairy, I feel terrible, or a lot of our patients do have structuring disease. So eating a
high fiber diet really is not a good idea for them. So those things we can work through.
(19:41):
You know, at this point, being on a diet and wanting to call that your only therapy,
if your Crohn's are all sort of colitis, doesn't usually work well, but as a compliment to therapy,
I'm totally okay with that. How do you keep patients taking that pill every day or that shot
(20:03):
every two weeks? I mean, that must come down to you, Emily, in your clinic, in your, you know,
I've had a few patients in the last few weeks tell me that I sound a lot like their mother.
Believe that. Usually they're about 18 year old boys with their mom sitting right next to them.
I try to talk to them about thinking forward. So thinking forward about how we're going to
(20:29):
remember it because remembering to take a pill is hard. Remembering to take an injection every
eight weeks is hard. So you got to plan ahead. And I try to tell my patients this, especially my
younger patients that you need to get out your phone, you need to set a reminder in your phone,
you know, at the time of this injection for your next injection so that this doesn't fall
through the cracks. And then with our younger patients, it's really trying to give them the
(20:55):
power to take control of their own disease and the management of their disease, because they're
so used to having their parents do this for them. And then they come to our adult practice
and we totally flip the switch on them and say, you know, this is your body, your health, you
are an adult now, and we need to make baby steps to get you there that you can take responsibility
(21:17):
for these things on your own. I'm sure part of that might involve talking to those parents and
helping them step back as a parent myself. I can't, I mean, picturing my, you know, child
going off to college and do parents play a role in that also? They do. And a lot of them are
hesitant to take a step back. And I, and I kind of tell them this doesn't have to be
a stripping the bandit off process where we expect this to happen overnight. Usually I say, you
(21:44):
know, here are goals for this visit. By next visit, I want Michael to remember to take his
medication on his own and to set the alarm on his phone. The next visit, maybe we talk about,
I want Michael to send me the myterm messages himself instead of mom sending them. So it's
definitely a process. What advice do the two of you have for patients living with Crohn's disease
(22:08):
and also to have colitis that are not yet in remission, that are still living with symptoms
every day, that are still feeling terrible? What would you tell them? Well, the first thing is,
let your provider know. I mean, I really, I challenge myself, I want to make everybody
perfect. And I say to the patients, I don't just say, are you feeling better? So are you perfect?
Because I want to be perfect. And feeling better, you know, you can go from going to the bathroom
(22:29):
20 times a day to 10 times a day and say, you're better? Like, yeah, yeah, you're a great doctor.
But no, I'm not, you're still going to the bathroom 10 times a day. Now, it may not be able to fix
everything, but certainly let your, let your healthcare team know. And if it turns out that
you aren't able to take the medicine either, because you don't want to give yourself shots,
you can't let them know, let them know where we're on your side. Okay, we're part of your team. We're
(22:51):
not, we're not the opposition. We're part of your team. Our goal is you. Our goal is to get you to
perfection. We're as close to it as perfect. And don't forget, sometimes patients need surgery.
I'm not a surgeon, surgery is not a bad thing. If you need surgery, you want surgery.
That's great advice. Thank you, Dr. Cohen. Just to kind of reiterate what Dr. Cohen said,
(23:12):
I think that communication is key. We can't fix something we don't know about. So talking to
your provider is, you know, the number one step at getting yourself in the right direction and,
and not being afraid to make a change. I see a lot of our patients kind of drag their feet at
switching therapies because they're worried about side effects. And the reality is, is that most
(23:34):
of the medications that we use these days are very, very safe and have great safety profiles.
And I try to help our patients understand this by telling them, you know, I would not lose sleep
if any of my family members were on any of the medications that we use for all sort of clitising
Crohn's. That's wonderful. That's great to hear. And as a parent, as a sister, as a
(23:56):
daughter and all of these things, it, that is the most important question. I think you always
are wondering, how will this affect my loved ones? Thank you both so much for taking this time.
Is there anything in the future that you are excited about with regard to the treatment of
Crohn's disease and all sorts of colitis? Is there anything coming, coming soon that we should be
(24:18):
looking for or that we anticipate will be the next frontier in research treatment for these
really important conditions? Well, sure, you know, on the medical side is personalized medicine,
where we're going to hopefully be able to know soon. I listed a whole bunch of different families
of medicines that if you need medicine, what's the best approach for you? What's the one that's
going to work the best and give it to you first rather than fifth? Because the end of your trial
(24:41):
and error to that on the surgical side, they're actually, the surgeons are always innovating in
ways to be have better outcomes with surgery and to prevent Crohn's from coming back patients
with those sort of colitis. They've done really to perfected surgery for many years and even more
advances on giving them normal lives as well too. And there actually are some very interesting
(25:05):
studies looking at why do people get Crohn's and colitis and maybe there is a way that we can adjust
something in their lives so they don't get it at all. Wow, that's the prevention is the best is
better than treatment angle. Well, you know, it's not really they're not really felt to be
infectious diseases. And you remember, you need your immune system, your immune system is supposed
(25:25):
to protect you from infections. The problem is that the immune system is is is misbehaving.
It's acting as if you you were have an infection and trying to get rid of it and it's trying to
protect you. So we just have to figure out how to get the immune system back, not to recognize
the new you as the enemy. Sounds wonderful. Thank you both so much for your time. This is
(25:47):
wonderful. I will look forward to talking to you more and hearing more about these advances as
they come to fruition. Right. Thank you so much, Annie. And for the Gastrointestinal Research Foundation,
really appreciate them funding this very important initiative. Yep. Thanks for having us, Annie.
(26:29):
To learn more about how to support the research that treats, cures and prevents digestive diseases.
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