FAACT's Roundtable

Ep. 253: OIT Management in Everyday Life

• Season 5 • Episode 253

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Oral Immunotherapy (OIT) represents one of the most promising treatments for individuals living with food allergies. Yet, beyond clinical studies, the true story lies in what families experience every day while undergoing OIT. Joining us is FAACT’s Medical Advisory Board Director and board-certified allergist, Dr. Shahzad Mustafa, who will help us explore OIT in everyday life — from its practical challenges to its life-changing impact. 

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Caroline: Welcome to FAACT's Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews and open discussions,

each episode will explore a specific topic, leaving you with the FAACTS to know or use.

Information presented via this podcast is educational and not intended to provide individual medical advice.

Please consult with your personal board certified allergist or healthcare providers for advice specific to your situation.

Hi everyone, I'm Caroline Moassessi and I am your host for the FAACT Roundtable podcast.

I am a food allergy parent advocate and the founder of the Grateful Foodie Blog. And I am FAACTS Vice President of Community Relations.

Before we start today's conversation,

we just want to pause for just a moment to say thank you to Stallergenes Greer for their kind and generous sponsorship of FAACT's Roundtable Podcast.

And please note that today's guest was not sponsored by or paid by Stallergenes Greer to participate in this particular podcast.

Oral Immunotherapy represents one of the most promising treatments for individuals living with food allergies. Yet beyond clinical studies, the true story lies in what families experience every day while undergoing OIT.

Joining us today is FAACT's Medical Advisory Board Director and Board Certified Allergist, Dr. Shahzad Mustafa who will help us explore oral immunotherapy in everyday life from its practical challenges to its life changing impact.

Welcome back Dr. Mustafa to FAACT's Roundtable podcast. We are so happy to have you back. You are always,

always, always, always a favorite because you're just so authentic and down to earth and you relate to us perfectly. So thank you for being here.

Dr. Mustafa: Thanks so much for having me.

Caroline: Well, you are very welcome.

So now diving into our topic, what does the day to day reality look like for families in the middle?

Can you take us inside their world and then share what are those experiences like?

Dr. Mustafa: Yeah. So OIT is a really exciting management option in the world of food allergy and I think there's a lot of changes and nuances that we're starting to appreciate. I think first and foremost, when someone has a food allergy, avoidance and carrying epinephrine devices is perfectly appropriate.

And I think families should know that the need to do something is not always the right decision.

But with that being said, there are now some management options. Whether it's medications like anti IgE or Omalizumab Zolair or different forms of immunotherapy.

Some individuals can get sublingual immunotherapy. But today we're talking about oral immunotherapy which is controlled exposure to fixed doses of the allergen over time. I think what's really changed over time is our appreciation for how OIT is the process, what it looks like, how well it's tolerated, potential benefits,

potential side effects in different age groups.

So I think we have to discuss it like that. I think in adults there's very little data to support OIT.

And there is good research that shows OIT for foods and adults is not particularly effective.

Let's say older children, let's say age 4 to 17. And there is again research on this. And the first FDA approved food allergy product, which was Palforzia OIT,

was it pre FDA approved? 4 to 17 originally. Now it's 1 and up. But in 4 to 17, OIT does work, unlike adults, but there are meaningful side effects and we can talk about that.

And it generally does not allow the individual to introduce their food allergen into their diet.

It gives them a form of protection in the setting of accidental exposure.

What I think we've learned in the last few years and some work that we've done at our center, but multiple other studies in younger individuals,

6 months of age, 1 year of age, 2 years of age,

OIT is highly effective,

much better tolerated with far less side effects, and may offer the potential to actually introduce that food allergen into the diet.

So really, really different.

So it really depends on the age and a whole bunch of factors. But I think age is the biggest factor on what is the patient family goal for OIT? Is it consumption of the allergen or protection?

And then what will it look like with how long are you going to be on it and potential side effects? So it's super nuanced.

Caroline: And so when you're saying how long you're going to be on it, is there a standard for this or any way to judge that ahead of time?

Dr. Mustafa: Yeah. So historically when someone does oit, they start at very low doses, increase the dose at some interval every two weeks, every three weeks, every four weeks,

to what we call a maintenance dose. Right. And historically the individual has stayed on that maintenance dose, a daily fixed dose of a food allergen,

daily, indefinitely. I don't say forever, but let's say indefinitely.

So Palforzia, for example, is 300 milligrams of peanut protein, which is roughly one peanut kernel daily,

indefinitely.

That's actually a pretty big ask to do something like that indefinitely eating a food that you're allergic to.

And many individuals kind of don't continue it indefinitely. With Palforzia, which was An FDA approved product. We actually published a small paper that showed many individuals, once they reach maintenance dosing,

switched over to typical dietary peanut products.

So if 300 milligrams is a peanut kernel, people just started having a peanut M and M or a peanut kernel for example. But it was historically with OIT,

the maintenance dose would be consumed daily and indefinitely.

Now in a small paper that we published earlier this year,

we showed that in infants,

especially before the age of two,

once these infants and young children reach a daily maintenance dose of OIT,

many for peanut can integrate it into their diet and just consume it like a normal dietary food,

which is really different. That's not a daily dose, it's not a fixed dose.

Really, really different. And I think others have done this, but ours is a small paper of about 60, 70 patients who we did this with,

they've done exceedingly well.

And that's a very different paradigm. Staying on a fixed dose indefinitely versus integrating it into your diet and eating it like any typical food.

Different doses, different frequency, different forms.

So again, I think the key difference there is age. And I think you might get different opinions here, by the way, if you ask other people who know more about this stuff than I do,

I think you may get different opinions. But I think this is a really quickly moving landscape with a lot of change happening.

Caroline: It feels like that there's a lot of change and it seems so different from when we were first having these conversations, like over a decade ago. It's been a long time since we've been having these conversations about OIT.

So it's exciting.

Dr. Mustafa: Yeah. I mean, we went from OIT 10 or 15 years ago that it's not ready for primetime, even though people were doing it to, in, what was it, February 2020, when a first big randomized control trial in the New England Journal of Medicine came out with Palforzia, which led to the FDA approval,

to now really showing the benefits of OIT in really young children. And our center will do OIT for peanut allergy as young as 6 months of age.

And that's a very different process than a 6 year old. And that's really important for families to understand.

Caroline: Definitely. And so now from your perspective, what are some of the biggest hurdles that families face as they move through that OIT process?

Dr. Mustafa: Yeah, I think in generally speaking, this is just personal experience. Please take it with a grain of salt. OIT is a much more user friendly process in infants and toddlers than it is in older children.

Particularly older children tend to have a pretty consistent reproducible taste aversion to their allergen, particularly peanut, for example. So they don't like to have a daily dose of their allergen.

Then when we have this conversation for adolescents, for example,

often the parents want it, but often the child doesn't.

And that's a tough needle to thread. Right, because we really, really do have to have engagement and having the voice of the child too, if they're old enough to contribute to the conversation.

So I think it really speaks to the age. In younger children, it's very user friendly. They tend not to be taste averse to their allergen. The side effects tend to be much less.

And it may be finite. Right. There's no indefinite daily doses. You may be able to integrate it into the diet.

In older children there it's again a daily dose. So they have to be committed to taking it. There's much more restrictions around decreasing the likelihood of allergic reaction to the doses, like rest after the dose, no exercise,

things like that. And when you get to a maintenance dose, you might be on a fixed dose indefinitely, which is a very different ask.

And the side effect profile for older children is many more side effects than younger children. Whether it's a risk of allergic reaction,

nausea, even vomiting.

We can have anaphylaxis, certainly. So these are all things we talk about.

So again,

management is certainly not one size fits all. And now OIT is not one size fits all either. It's different depending on age, depending on food allergen. It's a very nuanced conversation and the vast majority of allergists in America still don't offer OIT.

So you really, really need to be in a place where someone does offer it and then 10 of them can discuss if it's the right fit for you or your child.

Caroline: That really is a big point because it impacts the entire family.

Dr. Mustafa: Oh, absolutely, yeah. It's a big commitment. We used to call parents who did OIT for their children kind of allergist light.

Right. You're giving your child a food that you know they're allergic to. That is a fact.

So then you certainly have to be trained and adequate and confident in recognizing a potential allergic reaction and then managing it as well as.

Because you're going from strict avoidance to giving them a food allergen daily. I mean, it's a wild paradigm change.

Caroline: Oh boy. It's a massive mindset change. I mean, just everything that you've been working toward for years, you now are reversing it,

just totally flipping it. Oh my goodness.

Dr. Mustafa: Harping on this whole age concept. But that looks very different in a 1 year old infant versus an 11 year old soon to be teenager. Very, very different.

Caroline: That's true.

Now,

what advice do you find yourself giving most often to parents and caregivers? Like the kinds of tips that really help families succeed during OIT.

What's your big hot tip?

Dr. Mustafa: So before we ever start OIT, the first conversation we have with families, patients, children, if they can contribute to the conversation, is what is your goal for food allergy management?

If they tell you the goal is to consume the food allergen, that's a very different discussion than if their goal is to be protected from a reaction if they have an accidental exposure.

And generally speaking,

food allergy therapies, whether it's medications or OIT, or different forms of immunotherapy, sublingual or even potentially epicutaneous, generally the goal is protection from reaction if you have an accidental exposure.

I think the caveat there is in really young children,

there may be an opportunity to introduce the food allergen into the diet.

So what is their goal? And then to kind of explain the commitment. And many people have kind of false beliefs or false pretenses about what this looks like.

It is a big commitment.

We rarely prescribe OIT. The first time we meet a family, it's a discussion. There needs to be commitment. There has to be buy in from the individual, the individual's a child.

There has to be buy in from parents.

Families are complicated. There may be two households and there needs to be buy in from both parents.

So really what is your goal? And if you're looking to do this for protection from accidental exposure,

these are the pros and cons, and these are the other ways you can get protection from accidental exposure, right? There's other ways to do it. There's medications, there's FDA approved medications for infants and toddlers who parents may want to be trying to introduce the food into their diet.

That's a pretty high bar.

And we have some data for peanut, but for other foods, that's a really high bar.

And we may or may not be able to meet it. But again,

pros, cons, and is it worth trying?

Is as of today,

probably the best chance of introducing a food allergen into a diet that's not naturally outgrown as an allergy, like milk and egg and wheat often are, but otherwise peanuts, nuts, seeds, maybe early OIT, at a very young age, maybe.

And there's still debate here and I think others might disagree, but again, I keep Going back to this concept of the window of age and the opportunity for inducing tolerance.

So I think it's key. It's a big commitment.

It generally does not allow you to introduce the food allergen into the diet. It can have huge benefit on quality of life.

And it's a very, very individualized discussion.

Caroline: I think that's the key right there. It's so individualized, you know. Cause often we get excited when we hear something new and we want to tell all our friends about it.

We want everyone to do it too. But it really is one of these things that it's not everybody jumps on the boat because it is, like you said, so individual.

The commitment and the child and the.

Dr. Mustafa: Adult, let's say most people don't jump on the boat. It's not the right strategy for most families,

but for many it is.

And I think it's an opportunity that is becoming increasingly recognized as a very good opportunity, particularly in youngsters.

Caroline: Well, that's definitely exciting.

And so now how can parents and caregivers equip their children with the right words,

confidence, or even understanding about OIT in ways that really resonate at the different ages? Like how do we talk to the kids about this language do we use?

Dr. Mustafa: That's a great question and one that I don't think has an easy answer. I think it would be really, really imperative to work with an allergist, a board certified allergist who's really well versed in this work because many are not and many don't want to be.

OIT is a heavy lift for families. It's a heavy lift for allergists too. Right? There's frequent updosing,

there's in the office, the up doses take time,

reactions can occur. So working with an allergist you're comfortable with who knows how to engage children in the process because they are with families. They are the patient in front of us.

It's who we're committed to. But you're right, it involves everyone. It involves parents, it involves siblings, it involves other caretakers. So you don't speak to a 4 or 5 year old like you do a 14 or 15 year old.

So very, very important. But having engagement from kids who are developmentally appropriate to engage in the conversation is imperative because if you had a teenager sitting there not listening and the parents are doing all the talking and the planning, the process is unlikely to go well.

Caroline: To be honest,

that is an excellent point. So it's kind of hard to believe, but we're at the end of our time together.

So before we say goodbye,

what do you want listeners to hear from you? Because I know you always have great advice at the end.

Dr. Mustafa: I think the management of food allergy is an extraordinarily exciting time and with that excitement comes a lot of fast change and it's changing very quickly. And I think OIT is a great example of this.

There are FDA approved products for OIT for peanut approved down to age one. And I think the biggest thing is the age of the patient at the time of considering OIT is really, really important for effectiveness, side effects and tolerability.

And I would encourage patients who think this may be an appropriate option for them to reach out to a board certified allergist who offers OIT to have a discussion the pros and cons not just of this, but other therapeutic options.

Caroline: Well,

wonderful. Thank you again for sharing your wisdom.

You are known for being so authentic and just approachable. Everyone loves to listen to you speak because you're just speaking from your heart, but with your intelligence, with your medical background and that's just a really amazing combination.

So thank you so much for your time today.

Dr. Mustafa: Dr. Mustafa, thanks so much for having me.

Caroline: You're welcome.

Before we say goodbye today, we just want to take a moment one more time to say thank you to Stallergenes Greer for their kind and generous sponsorship of FAACT's Roundtable Podcast.

Thank you for listening to FAACT's Roundtable Podcast. Stay tuned for future episodes coming soon.

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