Ep. 223: Food Allergy Treatment - The Power of Community and Science

We’re sitting down with Debbie Chizever Taback, Co-founder of Latitude Food Allergy Care, to explore Oral Immunotherapy, also known as OIT, and the impact of transforming food allergy treatment with empathy, science, and expertise. 

Resources to keep you in the know:

• Latitude Food Allergy Care
• Free Weekly Event: "Ask About OIT" office hours on Fridays
  on Zoom at 9:30-10:30 am PT/12:30-1:30 pm

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Transcript

[00:08] 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 facts to know or use.

[00:24] 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.

[00:45] Hi, everyone. I'm Caroline Moassessi and I am your host for FAACT's Roundtable podcast. I am a food allergy parent and advocate and the founder of the Grateful Foodie Blog.

[00:55] And I am FAACT's Vice President of Community Relations.

[01:00] Before we start, we want to highlight FAACT's national gold sponsor, the National Peanut Board, and thank them for the years of continued support and partnership.

[01:11] We're sitting down with Debbie Chizever Tabak, co founder of Latitude Food Allergy Care, to explore not only oral immunotherapy, also known as oit, but also the impact of transforming food allergy treatment with empathy, science and expertise.

[01:30] Welcome, Debbie, to FAACT's Roundtable podcast. We are absolutely delighted that you are joining us to share your knowledge and passion about impacting our food allergy world. I have known you a long time and have been a big fan.

[01:46] Debbie: Oh, I am just as excited, Caroline. I'm so happy to be here and I'm really, really grateful that you invited me to join and share a bit about my own food allergy experience and company that we've built.

[02:00] Caroline: You have really quite the journey. Before we get started, let's start out. Actually, the conversation with your background and how you and a couple of other really impressive and passionate people came together to help families with food allergies tackle life and then launch Latitude Food Allergy Care.

[02:23] Debbie: Thank you so much for that introduction. So, first and foremost, I'm a parent of three teenagers with food allergies. Like so many families with children who are now young adults, when my kids were younger, we went through just years of trial and error and confusion navigating their food allergies.

[02:46] And those were the good days, was the trial and error and the confusion, really. The worst days meant fear, isolation, and even ER visits. And one of those worst days was actually when my twin boys simultaneously reacted to their first birthday cake.

[03:05] We were just thrust right into it. We learned that day that they're fraternal twins, but they had identical multiple food allergies to egg, peanut, and eventually to a combination of tree nuts.

[03:20] So, you know, really, for years, just the simplest family activities could just mean hours or Days of planning for birthday parties, school activities, camp, sports, travel plans. All of those, like, really normal, everyday decisions just brought that inevitable anxiety about how I was going to keep these three little kids safe in the world, you know, and I know that a pretty universal experience for a lot of families, particularly with multiple children with food allergies in a family.

[03:53] Life really changed for the better for my own family when my children were in the early years of elementary school, now about, actually more than 10 years ago, I personally became involved as a parent volunteer at the food allergy research program that was just getting off the ground at Stanford.

[04:15] I was very lucky to, you know, become involved as a volunteer and in that program in the beginning as a volunteer. I met Kim Yates and Julie Bitler, whose own daughters were in those initial clinical trials at Stanford.

[04:32] They were treated from multiple food allergies with oral immunotherapy, alongside with Zolaire, the biologic that was just approved this last year for food allergy treatment.

[04:46] So, you know, after years of feeling really isolated in my own food allergy silo, I found my pack, I found my people, and I was so grateful to just be working towards a common mission of making lives better for our own food allergy children, really all food allergy children alongside these other food allergy parents.

[05:08] So I really, really found my place in that. Not coincidentally, I actually had a professional background in medical communications before I was even a parent and a parent of, you know, allergic children.

[05:21] My professional background really was in communicating about medical devices, diagnostics. That was my world. So I didn't hesitate when I had the opportunity to jump in professionally and actually work for Dr.

[05:38] Kari Nadeau at the Stanford program. You know, I managed the communications there for several years, and that role really gave me the opportunity to just learn so much about the science behind the food allergies and to really see firsthand the impact that the treatments, including OIT that was in the.

[06:00] In the trials there, could have on the lives really of truly millions of families like my own. So that was really a pivotal, you know, a pivotal moment for me.

[06:11] Spoiler.

[06:13] Eventually, all three of my own children were desensitized to their food allergies with oit.

[06:21] My sons were clinical trial participants in the program at Stanford, and my daughter was treated in private practice. You know, so then really, after several years of working on the research together, propelled by the progress of the science that we were seeing in the Stanford program and our own family's really transformative experiences with treatment, Kim Yates, Julie Bittler, Kari Nadeau, and myself Together, we just had this very deep commitment to changing the narrative for all food allergy families.

[06:58] You know, we really felt that the status quo for care needed to shift from fear and confusion to the empowerment and confidence that we knew was possible for so many families like our own.

[07:12] We actually had an ideal chance.

[07:16] Along the way, we had some food allergy families who planted the seeds, both figuratively and literally, you know, prompt the idea of, could we create something entirely new? Could we create a groundbreaking new model for food allergy care?

[07:36] Like, how can we break that status quo? How can we make that shift? You know, and we really sought out to envision care that would support families at every stage of food allergies, not just, you know, not just the treatment part, because there's so many other stages of food allergy care and really transform so many food allergy families lives.

[07:59] Like, could. Could we do this? Well, that vision actually became a reality with our company, Latitude Food Allergy Care. We opened doors in 2018 to our first clinic in Redwood City, California.

[08:14] So not far from our origins at Stanford, and today we actually have four San Francisco Bay area clinics and three in New York. We've just opened up our third in the Westchester county area.

[08:28] All of our clinics are led by seven board certified allergists who are all focused really specifically on food allergies and care for patients and their families.

[08:41] Caroline: That is amazing growth. And I just love how back in the day, everyone was so passionate about finding solutions. And so it's really fun to hear that story. And so now you are definitely well known for your passion, especially about changing the face of food allergy treatments.

[09:01] Right. And the power of community and science. You've talked about this a lot before, so can you explain to our listeners how community and science actually intersect and then specifically around oit?

[09:14] Debbie: Yeah. Well, so you can't see on the podcast that I'm blushing a little bit, but I'm really proud of what you just said. I take a lot of pride in that and thank you for that.

[09:25] And I love this question so, so much because it really gets to the core of what we do at Latitude and the basis of our new model of care for food allergy patients of all ages.

[09:38] First, I really want to address that. Even a dozen years after the pivotal initial trials at Stanford and all the research across institutions across the country, they're seeing still really rampant misinformation and confusion about oit, about oral immunotherapy.

[10:01] I see dialogue in the food allergy community online, and I hear it directly from Many families that there's just these pervasive myths about treatment with OIT that, you know, potentially a patient is quote unquote, too allergic for treatment, or OIT is only accessible in clinical trials, or only certain ages can be effectively treated.

[10:25] And even the dialogue sometimes around this, like outsized, sometimes honestly, paralyzing fear of uncommon side effects of treatment can really dissuade families from understanding that they actually have treatment choices, that they do have options.

[10:45] So, you know, the consequence of that is really without truly understanding the options available today, families can just be so desperate for answers and a path forward that they may look to solutions in unlikely places.

[11:04] You know, it leaves families vulnerable to over promises or ineffective solutions that drain emotional and physical resources. That honestly, food allergy families are already starting with kind of low reserves with both of those things.

[11:20] You know, I mean, it can be quite dangerous when it leads to unnecessary food avoidance on one end or unsafe risk taking on the other end. That puts families in a really tough spot if they don't fully understand what their options are.

[11:37] So, Caroline, the counterpoint to that vulnerability is actually conversations like this. So, you know, podcasts like yours, organizations like Fact, have really incredible power to spread accurate information about evidence based care, which is just so valuable to those families who are really desperate to find solutions for their, you know, for their kids food allergies, for their own adult food allergies.

[12:05] So I just, I really appreciate that. That's like, just again, thank you so much for this opportunity to, to have this conversation.

[12:14] Caroline: You're so welcome.

[12:16] Debbie: Thank you. So really, you know, to that end, I want to make sure, I really want to start any conversation about OIT to just make sure that everyone knows what we're even talking about when we, when we talk specifically about this treatment called oral immunotherapy, abbreviated as oit.

[12:38] It's a process of desensitizing food allergic patients to the food that they're allergic to by gradually introducing the actual food in a stepwise manner under really careful clinical monitoring over a long period of time.

[12:56] You know, OIT effectively raises the threshold at which a food allergy reaction might occur. Like that's the actual technical thing that it is doing inside of the body. Really under experience medical guidance, OIT can be safe and effective for patients of all ages.

[13:16] We treat babies as young as 12 months old and we have patients that, I'll mention one of them in, you know, that are really age is not a limit. And I'll mention that, that story in a second.

[13:30] Also, I want to point out that multiple foods can be treated simultaneously. And I think that that's also some misinformation out there that while you treat one allergen over a period of time and then you have to add another allergen that you actually, this can be really effective from multiple allergens all at one time, but it is specific to the allergen that the person is allergic to.

[13:55] So I mentioned the age range of patients and I just wanted to share this story that we recently had a patient who is in his 60s who has managed a decades long allergy to macadamia nut.

[14:11] And he was just treated for oit. He just reached maintenance. I'm pretty sure he's in Hawaii now. That's why I, I don't have confirmation on the Hawaii part. But I thought, you know, if I was being treated for macadamia nut allergy in my 60s, that's where I would be heading.

[14:29] But really, age is not a limit. What can be, it's, it's not physiologically a limit with oit. It can very much be an emotional limit. Once, you know, people have dealt with food allergies for many, many decades, of course there can be some emotional obstacles to taking that leap of faith of treatment.

[14:51] You know, so I really, I want to go back to, you know, the idea that my children, Kim and Julie's daughters, thousands of clinical trial participants over the last, you know, dozen years.

[15:03] And actually I'm really proud of this number.

[15:07] More than 1500 graduates of our own OIT program at Latitude. I think I'm allowed to share that number are now able to navigate life more safely with just so much less worry thanks to this really specific treatment option.

[15:23] They're going to party, birthday parties and overnight camp and taking the trip maybe to Hawaii, you know, after this treatment. So, you know, and I know we're really talking specifically about OIT here.

[15:40] I really wanted to address the misinformation out there and what it really is. But I want to emphasize that what we, you know, focus on at Latitude is really testing first.

[15:54] So complete food allergy care does not only focus on the proactive treatment.

[16:01] You cannot have effective or safe treatment without accurate testing, without knowing what someone is truly allergic to.

[16:11] So at Latitude, what that looks like is accurate testing includes skin testing, blood work, and very often multiple food challenges. And all of those things can be really critical to that personalized treatment plan.

[16:25] You know, even getting to the conversation of is OIT something that is even clinically relevant for, for you? So to talk about the testing and the impact of what testing can have even before you're having that conversation.

[16:40] You know, some of my very favorite patient stories are children or even young adults who have been just avoiding whole categories of foods for years. And through our testing process, they're able to confidently move forward with one or just very minimal list of actual allergies to, like, know to move forward with confidence of what they're truly allergic to.

[17:07] I think I'm allowed to share this data, too. I. We're still finalizing the exact number. We think roughly 90% of our patients who go through an oral food challenge in our clinics are actually able to safely and very importantly, confidently add at least one food they'd been avoiding into their diet.

[17:28] And some of those patients are able to add even four out of five foods that they'd been avoiding. So that right there is already life changing and really shifts the narrative without even talking about proactive treatment, that the testing itself can be really life changing.

[17:46] Caroline: That is such an important thing. And I'm just so glad you brought that up because, you know, you're having me sit here and think, when was the last time my children did a food challenge?

[17:57] Right. So I'm really glad you brought that up.

[17:59] Debbie: Yeah. Well, I'm happy to talk about that offline with you later. So.

[18:04] Caroline: Good.

[18:05] Debbie: Yeah. Yeah. So.

[18:07] Caroline: So you just gave me the perfect segue into zeroing in even more on latitude and your approach to oit and families and patients. And then how do you differ? Because you're definitely very different, and you very much stand out.

[18:21] So what would you say is your magic?

[18:23] Debbie: Um, you know, I mentioned from the very beginning that we had the privilege of really building this practice from scratch. So we were able to say, what are the things that we needed in the care that we sought for our own children that we did not get?

[18:38] And how do we fill those gaps? So really, universally, I talked a lot about the testing and the, you know, the access to. To the testing is really important. We knew that after hearing countless stories of families, you know, coming through the trials and our own experiences, you know, that testing in general would leave families sometimes more confused.

[19:01] Sometimes it was incomplete, Sometimes testing was not offered at all, or one part of testing would be offered. And then a doctor would say, well, in a couple years, we'll come back and we'll do this other part of the testing.

[19:14] So it would not be completely complete. And, you know, even food challenges recognized, like, universally recognized as the gold standard tool of testing is still really difficult to access in our country.

[19:27] So strikingly, a few Years ago. Caroline, you might be familiar with this study. A few years ago, the quad AI released a statistic that on average, allergists in the US provide less than five oral food challenges a month in their practices.

[19:45] You know, what that means for a patient is that they might have a six month or longer wait just for one food challenge. And a lot of patients require many more than just one food challenge to have a really clear picture.

[20:00] In our clinics today, our providers are able to do an average of food four to five challenges a day. A day, which is so exciting. We have built our practice around these types of appointments because that testing is so critical to any decisions, to empowering the patients to make any decisions moving forward.

[20:28] They have to know what is an actual allergy. Other thing that we have put into place all sorts of amazing things that we wanted for our own children will just say this one pain point that I think pretty much universally every food allergy parent can relate to.

[20:45] If you've ever sat through a testing appointment for food allergies with a toddler in a general allergist office with no window, they close the door. You don't hear from anybody for like hours.

[21:04] Caroline: Oh my God. I could relate.

[21:06] Debbie: Climb around the, you know, climb up the walls. We have built out these clinics to really be patient centered. And we're not just using, we're not just throwing out that term patient centered.

[21:19] Parents continually tell us they feel warm, they feel clean.

[21:24] They, I mean, clean, that is like number one for food allergy space, right? You know, clean, safe. But the proof is really in what these little kids say when they come for their appointments.

[21:37] They don't want to leave, they're excited to come back. And they look for their favorite trucks, their favorite book, their favorite nurse, our beloved drawing tables. And they're interacting with other kids with the same, you know, life's kind of situation.

[21:57] These are all healthy kids in a clinic that all have food allergies. So there's community that is naturally built in those physical spaces.

[22:07] And you know, and patients, the parents, the young adult patients, like everybody universally just feels very, very comfortable in the spaces. So we've built out a lot of non medical support, but we also of course have the medical support in place that just really takes the support level of these protocols and expands on making sure that we're meeting every patient in every way that they need to feel really empowered through the process and confident and safe through the process.

[22:47] And you know, that on the medical side looks like a 24,7 clinical hotline. It looks Like a digital app that we have to track doses with some real time monitoring built in there.

[22:59] We actually have just started a program for some patients. We can provide virtual up dosing visits.

[23:08] So that's not all patients, but some patients if it's clinically relevant and that could make the sustainability of the treatment, it could make the compliance of the treatment and really just boiling back down to that issue of confidence of moving forward with the treatment just so much more effective and, and safe.

[23:31] And safe.

[23:32] Caroline: So we have come a long way, haven't we?

[23:35] Debbie: Yeah, it is. I, I'm really proud to list out, I mean that's only half of it because like I mentioned there's all these non medical supports as well. You know, I really want to make sure that I get to mention we have a weekly office hours that we provide on Zoom which is free to our patients but also to the general community.

[23:55] So if you have questions about your care that is, that can be, you know, just guided along the way in a non medical way, we're here, we're here to help with that.

[24:10] You, we can be a sounding board for the community and that is actually led by Julie Bitler who worked on the Stanford program with me and she has held the hands of thousands of patients going through these treatment choices and you know, so she's a really, really valuable resource.

[24:26] And so we invite the whole community to join those Zoom the their Friday mornings. And I think Caroline will be able to share the link with the community when our, when this posts.

[24:38] Caroline: Absolutely. And yes listeners, I'm going to list websites for you and I will definitely list that Zoom link so you can just pop in.

[24:46] Debbie: Yeah, yeah, that's great. I had a couple other things I wanted, really wanted to make sure that I covered. Really it should not be understated that this care that I am talking about at Latitude is in network with most insurance plans which means that patients can be seen at Latitude for the same cost as a general allergist for the diagnosis.

[25:14] The testing, food challenge appointments and any follow up visits after OIT is all covered by insurance. And I think that that is a really fundamental part of making this kind of care accessible.

[25:29] So I didn't want that to go unsaid.

[25:32] Caroline: That's important and I'm glad you mentioned that. Yes, this has been really terrific giving us just all this information about just OIT and this very different. But now I want to just circle right back to you for a brief minute as a food allergy mom because you and I are in that same age group.

[25:52] And we kind of go back that same time there and looking back at latitudes, coast to coast growth, especially this month, because you just opened this new clinic in Westchester, New York, Right.

[26:03] What do you feel in your heart like you as Debbie.

[26:06] Debbie: Okay, Caroline, I love this question so much. First of all, I really have so many amazing, amazing patient stories that just keep me motivated every day to stay focused on building this company.

[26:23] But there's really one thing in particular that fills my heart. There is like one, one specific thing. You know, I went through navigating my own family's food allergy treatment choices when My daughter was 8 and my boys were 5.

[26:39] And I still think about to this day, what if this had been accessible before they even knew that they had food allergies? If this had been accessible when they were really young.

[26:51] And could we have bypassed some of the cumulative emotional toll that comes along for our whole family with the food allergies? And today when I go into our clinics and I meet young families with babies or toddlers, we're a able to impact on the science side, we're able to impact the immune system of those children at such a young age.

[27:21] But from the family and my heart, my food allergy mom heart, there's potential that those kids will never know that they had a food allergy. It will be something their parents might talk about, but it is not going to be part of their own emotional weight.

[27:41] And when I have conversations with some of these young families and they don't even know that latitude is a relatively new opportunity for food allergy families, that this didn't exist, that this looked really different when my kids and your kids were young, that that is just the most amazing thing from my heart that they can take this for granted.

[28:06] That this is becoming the standard of care that just, yeah, just fills my food allergy mom heart.

[28:15] Caroline: It is just so mind boggling to me because when my son was first diagnosed 24 years ago, I was told, you're probably never going to see a treatment, you're probably never going to see a cure.

[28:27] And to have this moment. I agree. It just makes me want to cry, makes me want to tear up. Because it's just stunning, you know, to, to see now, like, wow, there are solutions and there are answers and, and people aren't going to feel that, that pain or that burden.

[28:46] I mean, they still have it and there's still a lot out there. It's a very serious condition. But that there are some possible ways, potential ways. It's mind blowing to me.

[28:55] Debbie: Yeah, I Mean, you brought up that combination of the community and the science, and we would not be here with only one of those elements.

[29:06] It was the perfect marriage of those two things happening at the same time.

[29:12] And I mean that across all of the food allergy community, we're a slice of that, representing that. But you can't just have one in a vacuum. They have to tie in together to really bring real change for the food allergy community.

[29:30] So. And I'm so excited about what is next.

[29:35] I just, you know, we have amazing growth ahead that I'm very excited about, you know, personally for Latitude, but also, you know, I'm seeing that there is a shift in the perspective of allergists as well.

[29:51] I'm seeing that fellows coming out of the allergy programs across the country are being trained in this, in better food allergy care, and that they want to focus on this.

[30:05] You know, I'm seeing, and I. I'm hoping that that's a shift for care across the country.

[30:12] Caroline: I hate to say it, but we're out of time. We could just go all day. I could totally go all day. And I know you could do with me.

[30:19] Debbie: I really enjoyed this. I'm so gr.

[30:22] Caroline: It's been amazing. So before we wrap up and say goodbye, is there anything else you want listeners to hear from you?

[30:28] Debbie: Yeah, I would just say keep an eye out for Latitude in your hometown. And, you know, we're really excited to grow. I mentioned we may be as many as 10 clinics by the end of this year in three regions, three or four regions.

[30:45] We'll see. We have a lot of growth plans. And of course, if you're heading to Quad AI, please look for me and our team at our Latitude booth. Booth will be there at Quad AI.

[30:56] You know, I really encourage community members to join our ZOOM and reach out to us if you have any questions.

[31:03] Caroline: Debbie, thank you so much for your time. This has been so fun, just learning about a different approach and then just learning how, you know, some passionate moms can come together with science and scientists and doctors and community and create change.

[31:20] So it's very exciting. So thank you very much for your time.

[31:24] Before we say goodbye today, we just want to highlight one more time FAACT's National Gold sponsor, the National Peanut Board, and we would like to thank them for their years of continued support and partnership.

[31:42] Thank you for listening to FAACT's roundtable podcast. Stay tuned for future episodes coming soon. Please subscribe, leave a review and listen to our podcast on Pandora, Apple Podcasts, Spotify, Google Podcasts, iHeartRadio, and Stitcher, have a great day and always be kind to one another.