From Controversy to Collaboration: The Evolution of OIT with Dr. Doug Jones

Transcript Disclaimer:
This transcript was generated using AI software from the original podcast audio and may contain errors, omissions, or minor inaccuracies. It has been lightly edited for readability. Please refer to the full podcast episode for the most accurate representation of the conversation.

Doug Jones, MD: 0:00

Parents, they already have kind of a PTSD from whatever happened with their child, which was probably a life-threatening event. Sure, of course they're gonna have that. But then, you not only have that, but then there's this onslaught of misinformation and then it just fuels it and they feed the fear. Right? What we want to do is. Combat that with great information, with accurate information so that it's empowering and educating. Then we can get in kind of a common ground with people, and make some progress.

Amanda Whitehouse, PhD: 0:36

Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence.

0:57

When families first started hearing about oral immunotherapy or OIT, there were only a handful of physicians out there willing to step into that space. Dr. Doug Jones, our guest today was one of them. He partnered with families, leaned into the science, and worked with his colleagues to help shape what OIT looks like in real world clinical practice today. Dr. Jones was doing this around the time when I was first looking into OIT for my son about 12 years ago, and so I'm thankful to him and his colleagues who really went out on a limb to provide this treatment for their patients.

Dr. Jones is a board certified allergist, host of the podcast Immune Edit, founder of FAST OIT, a nonprofit organization dedicated to teaching allergists how to provide immunotherapy treatments, and more than that, he's been one of the steady hands in a treatment space that has often felt controversial, misunderstood, and emotionally charged.

This episode is really exciting for me because it marks the beginning of the second part of our season on choices and allergy treatment. We're going deeper into detailed exploration of specific food allergy treatments, how they work, what the risks are, what the data says, and how to think clearly in considering these options for yourself or for your family. If you are one of the many allergy patients or families feeling caught between nothing and do everything, I hope that this series of episodes will be helpful for you.

Amanda Whitehouse, PhD: 2:18

Dr. Jones, thank you so much for being here on the Don't Feed The Fear Podcast. I'm really honored that you took the time to join me

Doug Jones, MD: 2:24

Absolutely, it's an honor. Watched your podcast and it's, you know, fantastic. It's great to be here.

Amanda Whitehouse, PhD: 2:30

Well, thank you, and I've been watching your podcast too, so it's exciting to hear a little bit more of your voice.

Doug Jones, MD: 2:36

Thank you. Thank you.

Amanda Whitehouse, PhD: 2:37

We're doing a whole big season on treatment options in allergy, but I really wanted you on to speak as one of the top experts on OIT, which I think is an overwhelming and exciting topic for a lot of families who are considering it. Can we just start, for those who don't know, and I'm already abbreviating it, could you give people a basic background of what OIT is so they can go into the conversation, understanding what we're talking about.

Doug Jones, MD: 3:03

Sure. So OIT stands for oral Immunotherapy, and it's just used to distinguish various forms. We also have something called SLIT, which is sublingual immunotherapy. So it's a different treatment option that we give. And we kind of start designating that because there's also, not for food, but like for environmental allergies, you have something called subcutaneous immunotherapy, which are like allergy shots. So the oral part is just what rout are we giving it? Is it oral or is it sublingual? Immunotherapy just means it's a therapy that's modulating or changing the immune system. And so, um. Later if you want, we can talk about different treatment options for food that are out there that don't change the immune system. But there's still a treatment option. But oral immunotherapy again just means it's oral, it's changing the immune system. And with that therapy you start out with microscopic amounts of the protein that somebody's allergic to, and with the right timing and dosing and intervals and route, we're able to capture that immune system and guide it along and change it for the benefit of that patient. And so really that's what we're talking about.

Amanda Whitehouse, PhD: 4:25

Thank you. That's helpful. I think naturally, our food allergy brains kind of freeze when we talk about. know, anything that involves ingesting our allergens. And so, I appreciate you getting that out of the way right in the beginning so

Doug Jones, MD: 4:36

Yeah.

Amanda Whitehouse, PhD: 4:37

people can kind of digest that a little bit. So before we dive into the details, would you give us some background on you and how you got into doing what you're doing now?

Doug Jones, MD: 4:45

Sure. Um, before I get into that, just to address what you just said, which is key is people are like. And, and I love your title of your podcast, by the way, like, Don’t Feed the Fear is awesome because there's so much fear out there and, and the fear comes from a lot of misunderstanding or, or marketing or manipulation or whatever. But like with oral immunotherapy or sublingual immunotherapy, there's certain thresholds by which the body will react. And we actually start at doses lower than that. We start at thresholds that are below where you'd react. We capture the immune system and then we kind of build through that just so we don't feed the fear.

Amanda Whitehouse, PhD: 5:25

Thank you. Yes. Yeah. And that's why I was trying to get it out there right in the beginning because I think people can just shut down. Like, I'm never doing that with my child. I would never take that risk. But, we can talk about the risks later, but you're right, that idea that we start below the threshold of reactivity for that individual. We're not

Doug Jones, MD: 5:41

Yeah,

Amanda Whitehouse, PhD: 5:42

them into a reaction and deal with it and toughen up kind of perspective.

Doug Jones, MD: 5:45

right. And there's an organization to it versus a randomness that that would occur if you're ingesting that any other way. So that's just kind of getting that out there out of the gates. But from my background, I started my own private practice back in 2008 and just normal run of the mill allergy clinic, but then what I started noticing over the course of the following years was back then, it was avoidance, carry your Epinephrine, hope that that nothing happened, and that's how I was trained. That's all that was really being offered at that point in terms of food allergy, it's not even treatment, it's just management. Kind of that passive approach. And as food allergy started to rise and I started seeing more and more people, I got really dissatisfied with the answer that I was giving. I would have patients come in, I would give them the answer and they would leave and I would feel sick to my stomach. I was like, what did I just tell them? I'm not helping them in any way. I'm not serving them. All I'm doing is adding to their fear and anxiety and I thought, I have to change. I have to do something to give a better answer, or at least give an option, a choice, so that people had a choice.

And it was about that time that some of the first kind of oral immunotherapy clinical trials were being done. And it was just kind of starting out in some of our conferences that we were hearing about those early trials, but also doctors that were doing it in private practice. And that's when I first started tapping into this was just a couple years after I finished my clinical training. I'll never forget, one day I, I had already been taking care of a family and the son had a peanut and tree nut allergies and we'd had the discussions with the parents, but then the parents brought their daughter in who was 11 months old and she had just had a drop of milk spill on her and she head to toe hives and they were nervous because she said we were getting ready for her first birthday cake and they already had a son, and she said it is such a tough life of having to avoid peanuts and tree nuts if we have to add milk, because it, it's individual patients, but it's the family, right? It affects the whole family. And so she said, if we have to add milk to this, I don't know how to handle all of that. And turns out she was milk, egg, wheat, peanut and tree nuts.

And I remember walking in the room that day and the family was devastated. I was devastated. And the mom looks at me and she's just like, what do we feed our daughter? And I looked at her and I said, I don't know. You know, it was like, whoa, that was a lot. And, and I just felt so sick to my stomach. They're in tears. And I walked out of my office and I thought I just gave them a massive disservice and called a mentor in Dallas and said, look, I know you're doing this kind of treatment in clinical practice. I need to learn something. I need to be able to offer something else besides what I just did because I'm not serving people right now. And whether people did it or not, I wanted them to have a choice to do it. And so he said, yeah, come to Dallas. His name was Richard Wasserman. He said, come to Dallas, happy for, to help you meet with my staff. So I did. Flew to Dallas, met with him, met with his staff. Shortly thereafter, I flew my staff to Dallas so that they could learn directly from him and his staff. And then we started, we were, not the first, but you know, one of those first clinics back in 20, I think 12 or 2013 is when we started this. And from there, it's just grown and it's been awesome over the last 12, 13 years to be able to give people a choice and gives them something else if that's what they wanted in their life. And through that we've been able to connect with families from all over the world and treat patients from all over the United States, many countries, and really build a network and from that we were able to I co-founded along with Dr. Wasserman, a nonprofit organization that was dedicated to educating allergists and kind of best practices so that we could make sure that this therapy was in the right hands and kind of guard against hopefully bad outcomes and people doing it wrong. And so we've been able to develop that nonprofit and it's been awesome because from that we've been able to collaborate with doctors from all over and, and it's just been fantastic to have that outreach, to have the choices and, and now we have many choices, that we can offer patients. So that's kind of where I've come from.

Amanda Whitehouse, PhD: 11:09

I have so many things that I want to say and thank you for that. Let's pause there and point out the nonprofit that you started is called FAST, right?

Doug Jones, MD: 11:17

Yes. Food allergy support team or FAST. Yep.

Amanda Whitehouse, PhD: 11:21

And I know I, I personally have benefited from that. I know one of the doctors that I have worked with attends your conferences in Texas every year and, and brings back new ideas and, and things every year, and with all of this clinical, you know, observation that you can put together, rather than being these isolated little practices, there's so much more to be understood about how things are unfolding, right?

Doug Jones, MD: 11:41

Oh thank you so much. And the thing I love about our group is, I mean, we're like allergists for allergists who are for patients and it, and it's just like we truly collaborate. It is a spirit of collaboration. There is no. Pharmaceutical input. There's no industry sponsors. It's like it is us and the only agenda we have is making things better for our practice, our patients, and our practices and, and advancing that science and everyone who goes to the meeting, it, it legit is just that spirit of collaboration of how can we better serve and it is. To me, it's just been the most, it's the greatest organization to be a part of because it's that grassroots effort where the intentions are right. And to see that spread, to help patients across the country and now across the world, because we're having doctors from overseas come in and it is been fantastic.

Amanda Whitehouse, PhD: 12:37

And just in case people, I want them to understand, they'll hear people talk about the Wasserman protocols and that's

Doug Jones, MD: 12:44

Right.

Amanda Whitehouse, PhD: 12:44

that you established this organization with. Right? I want people to connect that.

Doug Jones, MD: 12:48

Yeah, and there's, there's a lot of protocols out there. His were some of the first, and then people will kind of modify those based on their own practice. But it, that's kind of that foundational piece and the thing that I've kind of learned over the years is the products and the protocols are the easiest part. And usually when people are starting out, that's their focus. But really, I've kind of found that's the easiest part is everything else that kind of comes into play, that can be challenging for some patients.

Amanda Whitehouse, PhD: 13:19

I'm not saying get hung up on which protocol your doctor is using, I just like people to be familiar with a language that gets thrown

Doug Jones, MD: 13:24

Yes, a hundred percent. And, and I think that's a really good to point out. I think your rapport with your doctor that trust their experience, what they're confident in, um, we always say at our FAST meetings, there's a lot of ways to do this right? And what we're trying to guard against is people from doing it wrong. But we also appreciate and embrace the differences in how different people can do it right, and that's okay.

Amanda Whitehouse, PhD: 13:52

Yeah. And I think back to what I wanted to say thank you for, you know, you touched on how practice used to look like for you and it's avoid and epinephrine and hope. And I was one of those parents, my son was diagnosed in 2012 and the hope that we had was, I hope he'll outgrow. And a couple of years of that and I thought this, this is not going to cut it. I don't ever mean to discount families who choose not to pursue something. But I just knew for me, It wasn't going to work for our family and was scouring and reading about the trials and it's great thank you to the doctors who were doing the clinical trials, but also all to all of the practitioners like you who just got this to us. Who, who did the work, the legwork to, to break ground with this new thing. The doctors in my area were shocked when I told them I was reading these studies and I wanted to do this thing. I got kicked out of allergist practices because of it. So I'm so thankful to all the doctors like you who agreed with us, that's not enough and we need to do more.

Doug Jones, MD: 14:46

Thank you, uh, that, that means a lot. And it's also a credit to you for actually persisting and pursuing and, and not just accepting perhaps one answer there. I've really loved the partnership that we've had with the food allergy community, and because we have kind of gone hand in hand to break ground on this and said we don't need, we absolutely don't need a pharmaceutical industry to dictate this. It's food and there is power in food that microscopic amount when used correctly, it can be used for good. And we can do this. We can think we can apply science and we can do it safely.

And the other thing that we were kind of committed to is early on we knew we were far, far, far from perfect. And, but it was like the more we did and the more we knew, the more questions that we had that we wanted to answer. But it was that collaboration and kind of learning as we go along where you start at a safe place. But then you, you mold and you pivot along the way to just make it better and better and safer. And we've done that and, and I'm proud of the allergists that took those steps that have collaborated and really kind of worked together for the benefit of patients.

Amanda Whitehouse, PhD: 16:08

Yeah, we're, all of us who have benefited from it are so appreciative and so many are curious. Can we start to tease that out? Can you explain to people how do you start with this food and introduce it in a safe way and progress forward with building up their tolerance?

Doug Jones, MD: 16:24

Yeah. So not to get too much into the science or the weeds on this, but in order for like an allergic reaction to occur, there has to be certain things that that happen within the body, and there has to be like a certain size of protein and, and it matters what route the exposure is occurring. What we're doing with immunotherapy, whether it's oral or sublingual, is we're able to capture the dose, the route, and the frequency in an organized fashion, not random, but an organized fashion, and again, starting at doses that are sub-threshold, meaning below a threshold by which you react and you can start just training that immune system with those very early doses and. With the correct timing and route and dosing, we're able to then just kind of raise the threshold and raise the threshold by which somebody reacts. And as we take our time and proceed with caution, we're able to increase the amounts of food and the safety because we're basically raising the threshold by which somebody would react to a certain food.

And with oral immunotherapy in particular, we can get it to a point where they can consume that food in unlimited amounts without avoidance. There's misconceptions being put out there that you don't get to that point, but you can. And there's many allergists across the country that absolutely can get you to a point if you want to, where you can eat that in unlimited amounts without the avoidance.

Amanda Whitehouse, PhD: 18:02

I want to chime in on that because I can testify that I'm one of those people with oral immunotherapy my son got to quote unquote free eating. What does that mean? That he did a 24 peanut challenge. He passed, he got the clearance to eat it. And he doesn't want to, he, he doesn't want to eat. And I think, I don't. Do you think that's part of the misconception, because so many kids avoiding it for so

Doug Jones, MD: 18:20

Yes.

Amanda Whitehouse, PhD: 18:20

eat it. They just wanna be safe.

Doug Jones, MD: 18:22

exactly. And what I always tell people is now we're at a point where we really can individualize therapy, and it's like instead of trying to put everyone in a certain protocol, it's not a one size fits all. I always say, let's find the size that fits the one. Right. Let's find that size that fits the family and meet patients and meet people where they are and decide where do you want to go? And let's find that, that treatment protocol or method that's going to get you to where you want to go. And to your point, I mean, think about if you, maybe if you didn't even have an allergy, but you just got food poisoning. Let's say you had food poisoning to a bad piece of chicken or some yogurt that sat out too long. You have a bad association with that, right? You're kind of scarred and it's like you hesitate eating that, and I've had that a couple of times actually with strawberry yogurt, and it's like, I don't like strawberry yogurt anymore because of that. And it's like, well, imagine having a life-threatening reaction to something like that, and what mentally, emotionally you have to overcome. And it's like, well, maybe they don't want it, but they still want the safety. And so like, that's okay. That's okay. And, and I think part of that mental thing too is you don't have to free if you don't want to, you can, and that choice is there. But if you want to just have safety, that's great too. And, and that's kind of where you can take OIT to a certain level or you could do sublingual and have that. But again, that's where let's find, instead of the one size fits all, let's find the size that fits the one and that fits you and that person, and your goals and your family, and let's guide you there.

Amanda Whitehouse, PhD: 20:13

I would think your patients would have so much more success with that approach too, rather than here's how we it in our office and show up at this time. We do this much. It's to individualize it in that way,

Doug Jones, MD: 20:22

Yes.

Amanda Whitehouse, PhD: 20:23

get on my psychologist pedestal. That's what makes people feel safe. This is about me and, and my voice matters in this conversation.

Doug Jones, MD: 20:30

And, and also it's like we have to remember, food treatment's not about me, it's about the patient and it's about what they want and what their goals are and what their life is. My job is to guide them there, whatever those goals are. I'm going to be fluent in all of the treatment options, whether it's SLIT or OIT or the use of what we call biologics or the combination, it's like what I need to do is stay on top of it, be fluent in all of the options so that I can present those options, pros, cons, and say, what's the reality, and now let's match that to your goals and let's see where you want to go with it, and how can we realistically get you there. Mm-hmm.

Amanda Whitehouse, PhD: 21:11

This is a little off track, but I'm curious because you have so much experience with it. I love SLIT. We're going to be doing some episodes about SLIT

Doug Jones, MD: 21:18

Great.

Amanda Whitehouse, PhD: 21:18

I'm a huge proponent of that

Doug Jones, MD: 21:20

Awesome.

Amanda Whitehouse, PhD: 21:20

of the puzzle, but it's even harder than OIT for people to find. Is there a reason why and are more doctors do you think going to be offering it as well in time? What's your perspective on that?

Doug Jones, MD: 21:31

Yeah, that's a, that's a great question and I have a lot of perspective on it, so, um. SLIT way back. If you, if you go back, this makes me sound really old, but you know, way back 10, 12 years ago,

Amanda Whitehouse, PhD: 21:46

worry.

Doug Jones, MD: 21:47

10, 12 years ago, when things are kind of, uh, starting to formulate with food allergy treatment, OIT kind of took off first. And a lot of it was because we had this perception of something that you alluded to before is, oh my, you know, okay, my child can eat the 24 peanuts. Uh, but now we find out they really don't want to. We, they, they really don't want any of that. Well, we had the idea that, you know, as we're starting the therapy, that once it's in the diet, everyone would want to eat it. Why wouldn't you? Well, that was early on. And so to get you to the free eating, we needed to do the oral immunotherapy.

And so this kind of takes off sublingual lags because you can't, you know, in order to free eat on sublingual, you'd probably have to do it a very long time. It's slow, right? And so it doesn't take off as quickly. But then you FAST forward several years after those of us that started with OIT, we're kind of realizing, hold on, not everyone wants to just free it, they don't like it, they don't want to do it, they just want the safety. Then all of a sudden, sublingual starts taking off because that's a great option in that case. Plus we also find out, you know, with OIT, you have certain restrictions after you dose, you have like an exercise restriction. Maybe there's a few more reactions that people may have.

With SLIT, you don't have an exercise restriction and so there's a little more freedom. You, you're kind of trading like, what do you want in life? Daily dosing, a little more freedom with the SLIT, but yet you're still gonna have to kind of avoid that food or bridge it to it, or do you want the little more dosing restrictions, but then at the end have that freedom of eating? And I think the lesson is we had to start with something, which we did.

The beauty from all of this is as we started with something and, and developed it, we learned a lot and we've listened to patients and we've heard it. And so now you see more and more people now adopting SLIT. And I can tell you with our, in our FAST group. We do surveys every year and over the last two, three years, we've seen a massive uptake of allergists now that are very interested in SLIT, that are learning SLIT, that are going to be incorporating that into their practice. And so you're going to see this catch up. So is it as available now? No, not, not as much, but you will see it. I predict in the next two, three years, SLIT is going to be as available as OIT.

Amanda Whitehouse, PhD: 24:35

And I think that will be a huge part of bridging the, mental leap that we have to take for some

Doug Jones, MD: 24:41

Yeah,

Amanda Whitehouse, PhD: 24:42

people just want to dive in and it's not an issue. But can you talk about that in terms of, not specific to SLIT, but just what you see as the, the barriers in terms of the fear and the anxiety that your patients have about consuming their allergens.

Doug Jones, MD: 24:56

I think a lot of it just starts with misinformation maybe that's out there. I, I actually co-founded a clinic in Australia, so I co-founded it there. And what I found is, is particularly in that country, is there was so much misinformation and so much fear that was being put into patients. That is a massive, massive barrier that we've had to overcome. I mean, it, it's everywhere, but it was interesting to see like per country or per region, even the narrative that's being put out. And a lot of it's just misunderstanding food allergy, misunderstanding testing, misunderstanding the treatment, and just not having that accurate representation of it. And I always say, it can be scary, but we wanna be prepared, not scared. We want to just have that knowledge and understanding so that we're empowered with it, not scared by it. And, and I think that's been the biggest thing that I've tried to do through social media, you know, podcast, whether it's through FAST or whatever, is we're just trying feverishly to combat misinformation. Because I think once parents. They already have kind of a PTSD from whatever happened with their child, which was probably a life-threatening event. Sure, of course they're gonna have that. But then, you not only have that, but then there's this onslaught of misinformation or people may be feeding a fear and it's like, then it, then it just fuels it and they feed the fear. Right? And, and it's like, what we want to do is. Combat that with great information, with accurate information so that it's empowering and educating. Then we can get in kind of a common ground with people, and make some progress.

Amanda Whitehouse, PhD: 26:56

Can we touch on what I think one of those biggest ones is? I think most of my audience, especially those who are either doing it and, and still afraid or afraid to try it, that idea that my child can have a reaction. “I hear about, you know, people doing OIT and they have a reaction, or even they might have a reaction so severe that they need to use their epinephrine.” Would you talk about that one please?

Doug Jones, MD: 27:17

Yeah, and that's a, that's a legitimate concern. It, it is a risk. It's something people need to know about. I always say we wanna act like the military, where we wanna be prepared for worst case scenarios, not most likely. Again, being prepared. So is there a risk of reacting in oral immunotherapy? Absolutely. But there's a risk to you no matter what. You can try to do everything perfect in life by avoiding and still have an accidental exposure, still have an accidental ingestion, still come across, something that's you don't know about. And usually those types of situations are not when you're gonna expect it. It's gonna happen when you're at a ball game, when you're at a birthday party, when you're at some kind of social event or social gathering. I had so many people that would order these like macadamia nut cookies from Costco and never be told that there's actually cashews in those things. Right? And, and they're reacting and it's inadvertent.

So that risk of reaction is there no matter what you do. But when you start with therapy, we're now dosing at a time when you're monitored, when you know what you're doing, when you're at home, when there's protocols in place, there's safety measures there, and it's predictable, and the risk is still really low. The, the risk of reaction, even though it's there, it's low. And I would argue the risk of reaction in OIT is probably less than your risk of an accidental exposure without OIT. But at least we're doing something and taking that. And if it does happen, it's at a time that's pretty predictable most of the time. And so you have control over the situation, whereas on the other side, you may not have that control and a lot of fear comes from unknown and not feeling in control. This is known and you're in control, and that makes a big difference.

Amanda Whitehouse, PhD: 29:31

You sound like a psychologist. I, if it weren't annoying for people to listen to, I would applaud you. Fear grips us so much we think of that, but we forget that it's not forever. It's for a prescribed period of time as we move. And then it, the balance tips the other direction. And I can attest to that. My son did have anaphylaxis and need and EpiPen at one point during his OIT and I wouldn't change it. And I would still say, as you described, the worry for those two, two and a half hours during and after dosing, knowing what to look for and having my doctors, you know. instructions my hand of what to do is a completely different experience than worrying all the time everywhere we go, infinitely for the rest of his life. So, you know, it, it's a trade off that for me was absolutely worth it.

Doug Jones, MD: 30:14

Agreed. Yeah.

Amanda Whitehouse, PhD: 30:15

From the mental health side, what do you think helps to set patients up beforehand as far as preparation and then during the treatment what helps them not to be gripped by the anxiety, not to be overwhelmed by that from your perspective as their doctor?

Doug Jones, MD: 30:30

One of the analogies that I give with my patients all the time is for me, OIT is kind of like flying in an airplane. And you, you have a start and you, you have a flight and you have kind of that destination, and flying can be scary for some people. Well, what if this happens and what if this happens and what if that happens? Well, what happens though, before every flight is there's pre-flight checks, not only for the plane and the crew and everything else, but they're also checking the weather. And, you know, are there any storms ahead and what altitude do we need to go at?

And so you're, you're making all these pre-flight checks and before somebody doses, we actually do that. You're having these pre-flight checks or these pre-dose checks. Is my child healthy? And you know, you go through all these checks. Why? Because we wanna make sure that flight is as turbulent-free as possible. But even if there is turbulence, it's okay because we can change the altitude or we have measures that we can take to address whatever that turbulence or whatever those issues are. And by and large, flying is safer than driving in a car. And to me it's like doing OIT is gonna be better and statistically better than not. And then you're gonna get to your destination and really enjoy that as opposed to just staying at home all the time and, and continuing to live in fear.

And so part of that is yes, I, I think we have to acknowledge, first of all, the fear. Acknowledge where they're at and validate that and say, yes, absolutely. You're gonna feel that way. I completely understand. This can be absolutely terrifying. I think just acknowledging that that's there. Absolutely. But let's walk through this and let's see, like, okay, what's the next step? What's the next step? Okay, if this happens, then what? Then what are we gonna do? And so we talked through it so that people are educated and prepared again. So now they're more comfortable and, and I think that's, to me, just kind of the key

Amanda Whitehouse, PhD: 32:44

That's so helpful. I love that analogy and I'm gonna steal it and use it as well because I think we forget about that. We don’t know when we haven't gone into it don't understand that there's this whole structure around it to protect us.

Doug Jones, MD: 32:58

There, there's so much structure and what's what's awesome too is um, the oldest patient that I ever treated, this was about 10 years ago. He was 65 at the time, and he was a retired orthopedic surgeon, and he came mainly because his wife was so tired of reading labels, meal prep. She was the one that was doing a lot of the grocery shopping and the, and they traveled a lot and she was the one vetting the restaurants. He didn't care, but she did. So she gets him involved. But the, the point of the story is towards the end, he asked, he said, can I bring a colleague of mine with me to my next visit? And I was like, sure, I don't care.

And so he brought another doctor colleague of his, who is a surgeon, and what he wanted him to do is he is like, watch his team, watch the nurses and he is like, they take more care of these doses in their checks and their double checks and the structure and all of that. It's more vigilant than what happens in the OR and even guarding like the narcotics in the OR and all of the precautions. He is like there is more structure and care that's happening here than there. And, and he, it was so profound, like he wanted to bring a colleague to see it. And, and I guess I would communicate that to patients in that there is so much structure, there's so much care, and the double checks and this and that, and really trying to enhance that safety for patients. It's always the safety first.

Amanda Whitehouse, PhD: 34:32

That's a really cool story. I want you to expand on that because I think people have another misconception that adults can't do. OIT.

Doug Jones, MD: 34:40

Right. Yeah. Adults can do OIT. And we've treated many, many of them successfully. And a lot of the focus is on children or or on peanut, but it's like there's more than one food allergy. And adults can do it. Young adults can do it. Older adults can do it. Adults pose, you know, they have a unique set of circumstances because often there's significant others involved and it absolutely impacts them. And then you have work and travel and different things, and it's like they need options too. And a lot of them, it may not just be OIT, but SLIT may be a nice option for adults because they're at a time of their life where I don't really care about, if I'm consuming the food every day, but I just want safety and I want to be able to go to a restaurant and not worry about some cross contaminant, you know, on the menu or this or that. Or their spouse or significant other doesn't wanna have to. And so that's where. Now that we have a menu to pick from for food allergy treatment, it's nice because we can offer a lot of options for adults as well.

Amanda Whitehouse, PhD: 35:51

What other barriers are there? You know, you talked a little bit there about adults. What else makes it harder or more challenging for people to try and succeed with OIT?

Doug Jones, MD: 36:00

I think right now is just trying to find doctors close to them that are, that are willing to work with them. I've just started a clinic where we're trying to overcome some of those barriers by offering telehealth options. I'm licensed now and there's an interstate compact where you can do telehealth, and so I'm licensed in many, many states trying to take the care to the patient so that if they live in rural Montana or rural Wyoming or somewhere where they don't have access, they still have access and, and so access is still a barrier, even though it's grown quite a bit, it's still a barrier. I'm very actively involved in trying to break those barriers down of not only offering the care that way, but also offering to work with their doc. If their doc doesn't know about it, it's like, well, we have a whole system set up to where you can come in and learn and, and basically implement this into your practice.

So I think if we can just expand our access, that's better, breaking down the misinformation so that people realize there's docs all across the country that are offering this, there's hundreds across the United States and it's expanding. And maybe psychologically there's those barriers that they have to overcome. But I think the more correct information that we get out there to empower people, the more we can break some of those barriers down.

Amanda Whitehouse, PhD: 37:28

Yeah. What's the easiest way for people to find a doctor who does offer treatment?

Doug Jones, MD: 37:33

They can go on FASToit.org. That's our nonprofit website and we actually have a map on FASToit.org where a lot of the doctors that have attended our conferences can be listed on there, and that's probably a great starting point. If they go on that website and still can't find somebody, maybe reach out to me because I'm connected with so many docs across the country. Usually I can find somebody, for them or try and help in, in any way that I can. So, you know, they're welcome to reach out to me, check FASToit.org.

Amanda Whitehouse, PhD: 38:12

And will you tell people how they can follow you and, and contact you in order to do that?

Doug Jones, MD: 38:17

Yeah @drdougjones on Instagram is probably the best. That's kind of where I focus social media on. They could also go to my website, just drdougjones.com. There's a little thing they can fill out if they have a question or, you know, need some information. Reach out, don't hesitate. I'm honestly here to help, whether it's me directly helping or aligning them with a colleague of mine, I'm more than happy to do those things.

Amanda Whitehouse, PhD: 38:47

Yeah, and I would encourage following you, following the people who are actually doing this on social media and like you said, dispelling myths and getting good information. I think someone who's on the fence, if they follow you for a while and hear you talk about it, warm up to the idea, I think it would be very helpful for them.

Doug Jones, MD: 39:02

Yeah, that's a good idea. And you know, you can follow along easy enough and hopefully as we dispel the miss you get a little more comfort with it and you, and we want a nice, community that we can build here. So, yeah.

Amanda Whitehouse, PhD: 39:15

I have one last question that I'm really excited to ask you given what an authority you are on this topic, because we hear a lot of different responses to this question. Is there anyone who cannot do OIT, who is not a candidate?

Doug Jones, MD: 39:29

Yeah, that's a great question. There's just a few absolute contraindications, but to me, I look at them as temporary because uncontrolled asthma is a main risk. Uncontrolled eczema or hives or really severe kind of anxiety surrounding this may make somebody temporarily not a great candidate for OIT. But again, I look at those as temporary because if your asthma is uncontrolled or eczema or hives, or anxiety is so severe that it's outta control, let's work to get those controlled. Now you can become a candidate for that.

And so even those absolute contraindications I think are really workable. And there's a lot of measures that we can take, whether it's therapy, whether it's just utilizing different treatment options to get those underlying conditions better controlled. Yeah. Now you're a candidate. Once we have a lot of these underlying issues controlled and maintained, yeah, I can't really think of somebody that we couldn't do it at.

Amanda Whitehouse, PhD: 40:41

You're not saying EoE, can you explain your perspective on that beause a lot of people think that if I have EoE, I have to stop or I can't try it.

Doug Jones, MD: 40:49

Right. And a lot of docs may not have experience with utilizing food allergy treatments in patients with EoE I, I have experience with it, so I've treated many, many patients successfully with food allergy treatments, whether it's, SLIT or OIT who have EoE, so it can be done. It's what we call a relative contraindication, and it's relative because it's not absolute, but it does need to be done with caution. And there's certain things that I kind of measure before and during. It may take a little longer, but by and large, a vast majority of those patients can do it, maybe not to all of the foods, because there might be some of the foods that if you're getting it into the diet, it's just triggering the EoE. But in patients with EoE. If, if they're having to do, like, for instance, a four to six food elimination diet, but we can get four of those foods back in the diet, that makes a difference. And so it is not absolute. And we've had tremendous success with so many patients with EoE. And it, again, even if we're getting 90% of the foods back in the diet, it just makes a big difference for the family.

Amanda Whitehouse, PhD: 42:03

Right for the family, not just that individual, but think of the parents, like you mentioned earlier, feeding two, three, four kids in the household and getting egg and milk back is a huge win. If you can introduce wheat and you couldn't have it before,

Doug Jones, MD: 42:16

Mm.

Amanda Whitehouse, PhD: 42:16

change for everyone in that family.

Doug Jones, MD: 42:18

Yeah. And the other thing too is we have great medications now that are available now that weren't available 10 years ago to where we can get the EoE better controlled and expand the diet. And if you have to take the medication, it's like, so be it because if you can expand your diet, make yourself safe. Get rid of that fear, the anxiety and live a more normal life. Great. Let's do it if that's something you want to do. We just have better things at our disposal to control the underlying EoE now.

Amanda Whitehouse, PhD: 42:54

That's just really encouraging. The whole conversation I think is going to give many people more hope than, like we said before, the hope used to just be, let's wait and see if you outgrow it, which was unlikely. And I think the way you discuss it is really reassuring for people. So thank you so much. What do you want to leave people with for final thoughts on the topic?

Doug Jones, MD: 43:11

I've loved the questions. I've loved the discussion. I think it's been pretty thorough. Just know that there is a menu for food allergy treatment now. There's a lot of options. We're making inroads every day to, to try and make it more available to patients. There's a great network. I've got a lot of great colleagues and, you know, we're dedicated to trying to create more normalcy for people in their life. Instead of feeding the fear, let's feed the body and let's get over this and get you shopping at all the aisles in the grocery store. It's been a great discussion. So thank you, Amanda.

Amanda Whitehouse, PhD: 43:47

Thank you. Thank you to you, thank you to all the amazing doctors out there who are doing this.

Doug Jones, MD: 43:51

Yeah,

Amanda Whitehouse, PhD: 43:51

it's life changing for so many people. I appreciate having you so much.

Doug Jones, MD: 43:54

yeah. Thank you.

43:56

Thank you to my amazing guest, Dr. Jones. I was so honored to have you here on the show and kick things off with you, one of the people who kicked off OIT here in the US. We'll be saying it on the podcast all of this season. More choice can mean clarity, but it can also mean more overwhelm. If this episode raised questions for you, that's not a bad thing. It means you're engaging thoughtfully. If this episode made you feel anxious, you're considering something that's slightly outside of your comfort zone that might bring about change in your life.

Here are three next steps.

Number one, follow Dr. Doug Jones. You can find him on Instagram at Dr Doug Jones. visit his website, which is the same, drdougjones.com and check out his podcast, Immune Edit for thoughtful conversations about immunology and allergy care.

Number two, if you're curious about oit, visit fastoit.org. You'll find a directory of other physicians who also offer immunotherapy, including OIT and sublingual immunotherapy or SLIT so that you can explore whether it's an option for your family.

Number three, if what you're wrestling with is the mental and the emotional weight of these decisions, all of these interviews I've been doing to prepare for this season inspired me to write a workbook to walk you step by step through the mental and relational side of choosing and navigating treatment. It isn't just a medical decision, it's a life decision for you and your whole family. You can find my workbook called From Fear to Freedom: A Guide to Navigating Allergy Immunotherapy on Amazon. If you're considering buying it, I would encourage you to consider supporting your local bookstore by ordering through them or through bookshop.org. www.thefoodallergypsychologist.com/books

As always your likes, shares, subscribing to the show, ratings and reviews wherever you listen, help to keep the show growing and I appreciate them so much. I will talk to you next week.

The content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda Whitehouse. Thanks for joining me. And until we chat again, remember don't feed the fear.