FAACT's Roundtable

Ep.262: Oral Immunotherapy (OIT) Basics

Season 5 Episode 262

You’ve probably heard of Oral Immunotherapy—or OIT—a treatment that’s gaining attention in the food allergy world. But what’s it really like to go through the process? Many families discover there’s more to OIT than they expected. To help unpack the basics and offer clarity, we’re talking with allergist, Dr. Brian Vickery, about what to know before beginning this journey. 

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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,

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Hi everyone, I'm Caroline Moassessi and I am your host for the FAACT Roundtable podcast. I am a food allergy parent and advocate and the founder of the Grateful Foodie Blog.

And I am FAACT's 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 Stallogenes Greer to participate in this particular podcast.

You've probably heard of oral immunotherapy, or OIT,

a treatment that's gaining attention in the food allergy world. But what is it really like to go through the process?

Many families discover there's more to OIT than expected. To help unpack the basics and offer clarity, we're talking with allergist Dr. Brian Vickery about what to know before beginning this journey.

Welcome back, Dr. Vickery to FAACT's Roundtable Podcast. We're all always delighted and thrilled to have you here because you bring such clarity that's really needed.

Dr. Vickery: Well, thanks Caroline for the invitation. I'm always happy to be back.

Caroline: That's good news.

So before we dive in, let's bring our listeners up to speed. Can you share a bit about your background and what first sparked your interest in oral immunotherapy?

Dr. Vickery: I finished my training and became an allergist 17 years ago now. And back then I,

you know, we really didn't have many treatment options at all for patients and so I was lucky to be on a team that was one of the teams around the country starting to study oral immunotherapy, or what we'll call OIT for this discussion with a little bit more rigor and scientific grounding.

Now there are reports of OIT in the literature as old as over 100 years ago. 1908, there was a case reported in England and to some extent it was one of those things that people were sort of interested in but didn't really understand and hadn't been studied on a widespread basis until really about the early aughts you know,

kind of 2005, 6, 7, 8, somewhere in there, which is around the time that I finished my training and came out. So I was fortunate to be involved in some of the early studies, you know, the first kind of randomized controlled trial and those types of things showing proof of concept.

And it's been interesting to watch as this has now evolved to be the bigger and bigger trials and now moving into the clinical practice environment where more and more patients now have access to oit, though still have a lot to learn and there are many patients who may not know that much about OIT or don't have access to it.

So we still have a long way.

Caroline: To go still, but we're moving forward. And I think it's safe to say you're one of the modern OGs of OIT.

Dr. Vickery: Well, if you will, thank you. I appreciate that description. And you thinking of me that way. I mean, I would say that I've come at it from a research perspective, really trying to understand what do we know with certainty, what do we still not know.

Trying to be as rigorous as we can about this because I think there's a lot of differences in the way that OIT is practiced and really want to try to push the field to move more towards,

you know, using as much as good of evidence as we can in the care of patients.

Caroline: And that's what we need, because as patients and caregivers, we need that trust in knowing that the science is behind this.

Dr. Vickery: I think that's the case. There has always been sort of the art of medicine and people trying to step into those gaps. We don't know everything about everything, right. You have to adjust and deal with uncertainty where it exists.

But we really want to move, continue to move the field, learn as we go, refine our approaches and really bring that evidence forward based on the best science that we know so that we can eliminate as much variation and uncertainty as we can.

So that no matter where patients are getting treated,

they are getting the most up to date information to guide their.

Caroline: Care and that we appreciate to no end. Starting with the basics, what is oit? And then who are candidates for this treatment.

Dr. Vickery: So yes, starting very basically, OIT is a way to treat food allergy that creates a change in the immune system and lessens the patient's sensitivity to that food. So I'll sometimes call it microdosing to families to sort of put it in context very simply, we take a patient who's allergic to a food,

we introduce small and controlled amounts of the food under Supervision to make sure that it's tolerated.

And then if tolerated, we start the patient on kind of a dosing protocol that is designed to increase the amount of allergen taken gradually so that the body sort of adjusts with each of the increasing doses.

And this is a concept that you can explain to almost a child who would understand it. It's intuitive, it makes sense. This is the way that we've treated allergy to cats or grass pollen or dust for many years.

With allergy shots,

expose the patient to small bits of what they're allergic to, the body adjusts and that allows a slightly larger exposure.

And this produces a shift in the body's immune response and also a change in their reactivity levels. And so it's important to remember that this is not a cure for food allergy, but it creates a change that we call desensitization, which is designed to protect the patient from an accidental exposure.

And this is sort of an overall goal of oit. Like, what's the value? Why would I consider this? Why would I start it?

The idea is to use this method to change the sensitivity levels such that the kind of accident that might happen when you're out and about in the world at an ice cream shop, when somebody by mistake uses the wrong spoon to dish out your ice cream and contaminates the thing that you ordered without your allergen in it,

now there's the presence of your allergen that might cause a reaction. The concept of OIT is to protect you from events like that that might occur.

That's from a high level standpoint.

There's obviously a lot more to it than that. And I think it's important to kind of go through those things, but at a high level. That's sort of the objective.

Again, it's not a cure. It's taken every day.

It requires someone to swallow the thing that they're allergic to,

which can cause some important allergic symptoms that we need to be aware of and be able to manage.

And generally would be expected to go on for years, if not indefinitely, because generally speaking, when you stop the treatment, the desensitization effect tends to wear off.

This is something that's been studied pretty well for peanut allergy,

less well, but still plenty of evidence in terms of milk and egg allergy. There's relatively less data for foods after that. So there's been a few studies in tree nut allergy, a little bit in sesame.

You know, there's essentially no data for a lot of the. The other common allergens and then less common foods. So it's, it's sort of a method that,

you know, is now increasingly being offered by allergists in the community as a way to desensitize patients.

But the evidence base is really only there for a few foods.

Caroline: And so now what age group does the treatment apply to?

Dr. Vickery: Yeah, good question. So I think the initial studies were kind of grade school age kids on average 6, 7, 8 years old when they're starting that type of thing. Many of the studies have included older patients, teenagers,

adolescents up until young adulthood. There's not a lot of evidence in adult patients with oit, perhaps because it requires a lot of patients to be able to do oit and that might be hard for adults to actually do.

But the age group that we seem to increasingly focus on and where probably the best data are actually the younger kids,

that is in the preschool years, ages 1 to 4 or so. There's been a lot of interest in treating this condition early and there are some benefits,

both practical benefits and maybe even some immunological benefits in treating this younger age group.

Caroline: And can you walk us through what treatment actually looks like from the moment someone has their very first appointment to getting maintenance? If you can just give us kind of a little peek into that.

Dr. Vickery: Yeah, I'm glad you asked that question. So the way we do it at my place, and I think at many places, and one thing that listeners should be aware of is in a typical visit with me, like a new patient visit or a follow up visit where we're, we're covering a lot of different things.

We might talk about OIT being a treatment option with some of the other treatment options that are available.

And if somebody shows interest in wanting to start oit, we actually book them a separate appointment which we call a consultation visit. And during that consultation visit, the whole focus is around what is oit,

what can you expect of us as the treating team, what we're going to need to expect from you.

We're going to answer all your questions. We're going to go through essentially an informed consent process that also gives the treating team an opportunity to evaluate the child's health condition and make sure that if there are any important comorbidities that they're under control.

So if the child has asthma, that the asthma is well treated, if they have,

you know, a gastrointestinal problem,

you know, that that's being evaluated and that in general the child is as healthy as they can be going into the OIT process. So we set aside a whole visit to go through all that, so that the idea when that visit is over, the family knows exactly what is going to happen and the treatment team is satisfied that this is a good candidate for treatment.

Once we all agree on that,

then we start the dosing. The dosing happens in the clinic, and the first dose is a tiny little amount. It's a fraction of.

Say we'll use peanut as an example here. So a typical peanut, if you open a shell and there's two kernels inside the shell of a peanut, each one of those kernels is about 250 or 300 milligrams of protein, depending on its size.

So the first dose that we'll give in the clinic is about 10 to 15 milligrams.

So it's a tiny little fraction of one peanut. On the first day, we give that under supervision,

and if the child tolerates it or the patient tolerates it, then we watch them for a couple hours, make sure they're okay on that first day,

and then we have them go home and take that same amount every day as a daily dose until their next visit with us. There are some rules around how we do that.

We go through this in the consultation visit, remind people at every visit. But there are important dosing rules that it's important that families follow. One is you never take it when you're sick.

Two is you always take it on a full stomach. Three is after you take a dose, you should have a period of rest time, quiet time, downtime for about two hours.

That means no vigorous activity and no hot showers.

Why do we do these things? Because the presence of these environmental conditions, like exercise or an empty stomach or a concurrent illness actually make the patient more sensitive, and so they're more likely to react to their dose.

After all,

the medicine in this case is an allergen. It's. And so we're trying to make the dosing as safe as possible.

There are a few other rules beyond that. Ibuprofen, it turns out, is a no, no for pain or fever. Sleep deprivation is important to know about.

In reproductive age women,

the menstrual cycle may affect their ability to tolerate a certain OIT dose. So we go through all this,

but we train the caregiver or the patient, him or herself, depending on the age,

to every day assess the readiness to take a dose. Are you well? Have you eaten enough? Do you have a plan for kind of a rest period?

If everything checks out, you take that dose and then you record it in your log for the day,

and then you keep doing this. Until your next visit.

Dose visits are typically about every two weeks.

At that two week mark, we bring you back to the clinic, and this time we test a slightly higher dose.

Make sure you tolerate it. If you tolerate it, you go home and repeat that. So you take it again every day at home for approximately the next two weeks. Come back at your next visit,

and we test a slightly higher dose. So we go through this sort of dosing ladder where the dose increases are roughly every two weeks. Sometimes they can be up to every four weeks.

You can go slower. You usually don't want to go faster than every two weeks. But what you can see is that while the changing doses, the first dose and then when we updose those happen under supervision, all the doses in between happen at home.

Caregivers have to get used to this concept that I'm going to be now administering the allergen to my child that we have in the past been avoiding,

and that we're doing this because there's a therapeutic benefit. This is a medicine now.

And that means that the patient or caregiver has to sort of turn into an amateur medical professional, right? They have to start making some clinical decisions. They have to decide, like, is today a good day for a dose?

Then we're gonna prepare and give the dose. Then we're gonna watch to see what happens afterwards. If something happens afterwards, what do we do then? Do we give an antihistamine and watch?

Do we need to give epinephrine?

Should we call the office? Do we need to go to the emergency department or call ems? These kinds of bigger reactions to OIT are not common, but they do happen.

And generally, dosing symptoms are to be expected.

Most of the time, that looks like a little bit of itchy mouth, you know, maybe a little bit of abdominal pain.

Things that are relatively mild and may pass without a lot of treatment,

but occasionally there could be a more significant reaction. And people need to be prepared to know what to do in that situation.

And so you can see this is happening every single day during the process.

There are thousands of people around the country that have figured out how to do this and make these adjustments in their lives.

It's a feasible protocol, but you can see it requires a lot of commitment. At minimum, you have to be prepared to come to the allergist's office every couple weeks for about six months to get from that first 10, 15 milligram dose to the maintenance dose, which is for peanut,

about 300 milligrams.

But then every day in between that, you have to keep giving doses at home. And then once we get to the maintenance dose, we're not really adjusting it as much anymore, but you're staying on it every day.

And so this has really gotta be part of your lifestyle every day.

Like, you know, like a chronic treatment, like an asthma inhaler that you, you need to take or a blood pressure medicine that you have to take.

It really does require a lot of commitment. And studies show that people that are on OIT are gonna have more reactions than people who are on avoidance because they're exposing themselves to their allergen every day.

Now most of those reactions are gonna be relatively mild,

but bigger reactions can happen. And so people need to be aware of these risks and aware of the commitment that's required to really make OIT work.

Because the other thing I always remind people is the medicine is an allergen itself, right? So if you miss a few days and then you take it again,

the more you miss, the more the dose itself can actually cause a reaction.

Compare that to an inhaler. If you're not as adherent to everyday, you know, use of your inhaler, if you miss a few days, but then you remember to take it, well, it's just taking a dose of the inhaler.

If you miss a few days of OIT and then you take a dose, you might actually react to that dose.

So it really does need to be pretty consistent.

Caroline: This is really amazing real world information that, that our listeners can take and look at their lifestyle to see does this match their goals, can they do that? Commitment, I mean, cause that really is a big time commitment.

Missing work, having your child take that rest time. I mean there's a lot that goes into this. So is there an average timeframe?

Like if someone came to you and said, okay, we wanna do this and we wanna be all wrapped up in a year or two years or I don't know, what is the timeframe on this.

Dr. Vickery: We really wanna leave people with the idea that once you commit to oit, you're committed that, you know, this is not like treating condition where a 6 12, 18 month course of treatment might be effective and then we can stop it.

If you do that with some limited exceptions, the long term benefit won't be there. It's not like it creates a permanent change in the immune system to where at a certain point you can stop it and then you're less allergic.

All the studies show that given enough time after stopping oit,

and different studies have defined this differently when they've looked at it you stop the treatment and reassess people at a month, at three months, at six months. All the studies show six months after you stop oit, for the most part, your allergy has kind of gone back to the way it was before you started oit.

You may have benefited from the protection for a year or two while you were on it,

and that might have gotten you through an important stage of your life. It's important to remember at whatever point you decide to stop, you don't get worse, but the benefit doesn't accrue.

Like it just tapers off and then you're back to square one. People then usually ask,

wait,

so that means I gotta do this for the rest of my life, which is an understandable next question.

And what I try to say to folks is, well,

don't think about it in those terms like the rest of your life,

because we're gonna continue to learn more.

There are lots of other treatment options that are coming out.

The way we treat your allergy or your child's allergy is going to continue to evolve quite a lot in the next,

even three to five to ten years. If you choose OIT now,

recognize that it's a longer term commitment,

but that you'll continue it as long as, number one, it continues to add value to your life. And number two, until something comes along that might be better than that that you want to switch to and, and the likelihood is that OIT is really one of the main treatment options available to people now.

There's still a lot of folks who don't have access to it. Only a small number of clinics at this point even still really offer it.

It's one of the main considerations right now. Based on the research that's being done five years, there are probably gonna be multiple other options besides oit, you know, so this idea of like, we'll have to take this the rest of my life.

Well, you have to stick to it once you start it, but recognize that your choices will continue to evolve. And it may be that we're able to transition you to something that's a lot easier for you to manage once we have that option.

Caroline: So just a quick question.

So if a family listening today is very interested in oit,

what should they do to research it? Obviously set an appointment with their allergist. But are there any online resources you think they should turn to or how should they approach this?

Dr. Vickery: Obviously they should speak with their own treating physician about, you know, kind of what their options with respect to food allergy care are and be Aware. Listeners should be aware that not all allergists offer oit.

There are clinics that are popping up and practices that are more familiar with it. But there are still plenty of allergists that know about OIT but don't really offer it as an option.

So if, when you speak to your treating physician, if your physician is not comfortable with it,

ask them for a recommendation about somebody that they trust, that they know, that might be able to answer your questions or provide you an opinion. I would say at the national level or at a high level, understanding what's going on in the OIT world actually at this point still is a pretty big gap.

There's not like a directory of certified practices. There's not like an accreditation process to say like providers have completed a course and been certified to provide oit.

It's not like a fellowship year that you do to get the extra training. There's not even really billing codes that allow us to track who's using OIT and how people are doing.

We don't even really know within an order of magnitude right now how many patients are accessing oit because the way you would normally be able to measure that at the population level is through the use of claims data and billing codes.

And there are not unique billing codes to OIT. There's probably somewhere between 10,000 and 100,000,

maybe a couple hundred thousand patients across the country that have tried oit. At this point, we don't know what that number is and we don't know the number of practices offering it.

If you live in or near a big metro area, chances are there's probably somebody nearby that does a high volume of IT business. If you don't live in one of those areas,

there may not be anybody nearby that has a lot of experience. And that's an issue. That's a problem because that's why I was saying earlier we still have a lot of work to do to make this a safe, accessible, affordable, effective, evidence based treatment that many people can access.

Caroline: Thank you again, Dr. Vickery. This kind of clarity is so important because it's a big commitment and it's a big deal and it's a financial commitment, a time commitment. So we appreciate your time with this.

So now turning to the families,

what questions should a family ask themselves to confirm that OIT might even be an option?

Dr. Vickery: Well, so you mentioned earlier in the conversation about goals and that's an important thing, like how does the food allergy affect your family and what would a future state look like?

That is Preferable, like what are you hoping to achieve? What does that goal look like?

And then beyond that, what are you willing to do to, to achieve that goal?

Some of that has to do with the logistics of the treatment and again, being able to take the time off of work and maybe even pulling a child out of school if they're in school to attend these visits.

Continuing to do that two hour rest period turns out to be an important issue,

especially for kids that are busy and have a lot of extracurriculars. They get let out of school in the afternoon and then they have practices and are being run around to various things.

Then we try to get dinner on the table and then they get their homework done and then it's time for bath and bed and you know, we're exhausted. Where could we have fit immunotherapy in there?

So thinking about just those lifestyle logistical considerations.

And then also I think an important thing is just risk tolerance, this idea that we are going to bring allergen into the home and administer it daily as a treatment and then assess for allergic reactions and then be prepared to treat those allergic reactions that the treatment itself creates,

which could hopefully not, but someday might even result in an anaphylactic reaction to a dose. You've gotta be comfortable with that idea. Know what to do, be prepared to use epinephrine, ideally live somewhere close to a healthcare facility that you trust.

You know, this is not a great idea on the side of a mountain, you know, remote from civilization.

And so just thinking about these things, like how would we really make this work again?

There are thousands of people that have made it work,

but not nearly every patient is on oit.

So I think it's just important to be honest with your potential limitations or the things that could be barriers that keep you from this.

And if this isn't, doesn't sound like the best option for you, there may be other options available now or certainly in the future. There will be. And so again, that's why we do that whole consultation visit upfront.

So before we even get started,

people really know what this is and they know what they're getting themselves into. And it's okay to say, you know what, this is just not for us, that's okay. I, in fact I almost try to talk people out of it so that they come back and they say no,

you know, I've heard all that, I've thought about it deeply, we're ready to do it. Cause we know, we know what it is.

Caroline: I think that's a great practice because Then you're not overselling it and people aren't buying into the fantasy or the dream of it and the excitement of it, which is wonderful and that's why they're doing it.

But we do have to be realistic so that way we can be successful.

Dr. Vickery: Yep.

Caroline: And I think that's real key. Well, we're at the end of our time together. It always goes so fast with you. Before we say goodbye, is there anything else that you want our listeners to hear from you?

Dr. Vickery: Thanks for asking that question. And I do.

Look,

OIT is one of the options that's more and more widely available and it can be a life changing experience for a lot of folks,

but it's not the kind of treatment that's right for everybody. Okay. So I just want the listeners to know there can be a lot of drama and judgment about what you are or are not doing.

These message boards and talking to peers. There can be a lot of you should do this or you should do that, or you should see this person or you should go to this clinic.

You gotta do what's right for you and your family and the patient, whether that's yourself or your child. And be honest that that's okay. Whatever decision you come to is the right decision for you.

Caroline: Absolute perfect words of wisdom to end this great conversation by.

Thank you so much, Dr. Vicke, for your time and your knowledge and your research. And I'm just really glad you chose us as your area of focus and OIT and all the good things that you do.

So thank you so much for all that you do and thank you for being here.

Dr. Vickery: Thanks for having me, Caroline. I always enjoy our conversations and hope it's useful to the listeners.

Caroline: Oh, I know it will be. So thank you very much.

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

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