Understanding Barriers in Food Allergy Care with Dr. Linda Jones Herbert and Dr. Hemant Sharma

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. 

Dr. Whitehouse:
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.

Today on the Don't Feed The Fear Podcast, we are continuing to talk not just about food allergies, but who gets represented, who gets supported, and who gets left out of allergy research and care. I am joined by two clinicians and researchers from Children's National Hospital in D.C. Dr. Linda Jones Herbert is a pediatric psychologist and the leading researcher and a leading researcher on the psychosocial dimensions of food allergy, health, equity, and access to care.

Also joining us is Dr. Hemant Sharma pediatric allergist and immunologist, whose clinical and research work focuses on food allergy treatment and how real world access, trust, and family context shape whether these options are feasible and equitable. Dr. Herbert and Dr. Sharma's work is helping us to better understand racial, socioeconomic, and systemic disparities in food allergy diagnosis, management, and outcomes.

In this conversation, we discuss the factors that intersect with food allergy care and how research and clinical interventions must evolve if we truly want patient-centered equitable allergy care.

Thank you, Dr. Sharma and Dr. Herbert for joining me here on the Don't Feed The Fear Podcast. I'm so excited to have both of you together for what's probably a really huge conversation that we'll just scratch the surface of today.

Dr. Herbert and Dr. Sharma:
Yeah. Thanks so much for having us.

Dr. Whitehouse:
I'd like to know how you got into working with allergies and doing the work that you find yourself in now.

Dr. Herbert:
Sure. It's always an interesting story to tell because every time I tell it, I think about other things that have influenced me. But I come from a long family of educators. I've always loved working with kids, and I was a very anxious kid in the medical context and. Really kind of gravitated towards working with kids in like a healthcare setting and wanting to help kids who might be feeling anxious about things the way that I used to.

And so that kind of led me to join a pediatric psychology lab during undergrad school where my mentor was working with an allergist who said, "we really need to talk about food allergy because my parents who have kids with food allergy are feeling really stressed and nobody has talked about any of this."

So as an undergrad I was able to get involved really back in the early two thousands on some of this early research on food allergy. And I became really fascinated with the way that families, every single day, multiple times a day are navigating a chronic illness. And seeing that there wasn't anyone working in this space, it felt like something that was really exciting that I could contribute to.

And around the same time, I had a roommate in college that had a peanut allergy, and I witnessed her having an allergic reaction. When her boyfriend gave her a cookie that wasn't properly labeled. And so I started having these experiences and just started like picking up and understanding more about like the importance of food allergy in everyday life.

And then for a while I kind of took a turn and started working in the diabetes space 'cause there wasn't a lot of out there for food allergy. But I got incredibly lucky when I was at Children's National Hospital as a fellow because Dr. Sharma approached my mentor and said, "families want a psychology program. Do you know anyone?" And we met and we kind of like, it felt kind of like kismet that the two of us then. Developed a vision and really stepped into a space that we felt like had a gap. And I get really excited about, you know, creating new things and helping people that haven't necessarily gotten the help that they need.

And from there out, I've just loved allergy, I've loved helping families navigate all of this. I don't have any personal lived experience with this, but I have loved ones in my life who do have food allergy, and it's been just really rewarding to be able to be out there and working with these families.

Dr. Whitehouse:
Thank you for sharing that. It's interesting because, I grew up with a younger sister who has diabetes, and so to see the same impact on every aspect of life and how food permeates all of our life experiences and then the impact on the parents, I feel like that was my foundation for then what I ended up with in parenting.

So it's interesting that we both kind of had that intro.

Dr. Herbert:
Yeah. Yeah. When I was thinking back about my childhood experiences when I was in college, my sister had a best friend with PKU, Phenylketonuria, and she always had to bring special foods. And I have this really clear memory of her mom telling my mom like, this is the house I will let my daughter go to because I trust that she'll be safe.

And that also had this like a really big impact on me when I was thinking about food allergy.

Dr. Whitehouse:
Yeah, there's a lot of overlap where we don't necessarily see it until we've experienced it, right? Mm-hmm. Well, thank you. So Dr. Sharma, how about you?

Dr. Sharma:
Yeah, for me, I think part of what I've always loved about medicine is the opportunity to follow patients over, over their period of growth.

And so I always gravitated towards pediatrics and when I decided to become a pediatrician, then it, I was deciding, well, should I be primary care or should I specialize? And interestingly, initially I thought I want to be a pediatric cardiologist. And, and I said, okay, I love the logic of the heart.

It kind of made sense. I ended up applying to become a pediatric cardiologist, was about to put in my rank list. And then I was asked to stay back in my residency program to be a chief resident and at that time they would not allow you to defer. So the cardiology programs that I had interviewed at said, just reapply next year.

And after that year, during that period of the year, I did an elective in allergy and immunology, and it was what Wesley Burkes down at Duke. He now is the head of UNC healthcare and I fell in love with the elective. It made sense to me much the way that the heart made sense, the immune system made sense.

But what I really liked about allergy was this aspect of looking at the growth of patients over years, and also how chronic illness influences their overall lifestyle. And it ended up evolving to then apply to the fellowship. I also had a strong interest in health disparities, and so when I went to fellowship initially, I thought, well, if I'm gonna become an allergist, I wanna really look at asthma, because there was a lot of data showing that there were differences in asthma in urban centers versus other places by race, by socioeconomic status.

And then during the period of fellowship when I was learning to become an allergist, my niece was diagnosed with food allergy, my brother's daughter. And I remember trying to support them through those initial early years and all of the, the kind of the fears that emerge when you have this baby and all of a sudden you're told they have this potentially life-threatening allergy.

And at that time the field was nowhere near as advanced as it is now. And so then I really shifted towards wanting to specialize more specifically in food allergy. And I still had that interest. In health disparities, and that over the years have kind of gravitated towards folks who have that focus on not just the medical aspects of living with food allergy, but really how it affects your entire life.

And when I came to Children's, as Dr. Herbert said, that was what we were hearing over and over again from families was we really need to focus on the behavioral aspects of living with a food allergy. The mental health implications. And so, kismet, as Dr. Herbert said, we connected, and were lucky enough to recruit her onto our team.

And then it's just been a joy professionally to be able to work alongside her and see her grow her research career into now, like one of the preeminent experts as it relates to the psychosocial implications of food allergy. And so it's really, I think, evolved over time. And whenever I mentor, I always tell folks, you don't quite know where the journey's gonna lead you.

Because sometimes, you have these twists and turns, but the themes I think do kind of resonate throughout in the way both of us approach. Patients with food allergy and really trying to make sure that we're looking at it holistically, and really looking for ways that we can make, living life better in the context of food allergies.

Dr. Whitehouse:
Yeah, between the two of you, there's so much research that we could dive into. Why don't you take us through starting your work together. Where do you feel like was the first really big project or milestone in terms of your research together?

Dr. Herbert:
Oh, that's taking us back, isn't it? I mean, I think one of the things that was really apparent to both of us early on is just how young the field of food allergy research was compared to other chronic illnesses. So in the pediatric psychology world, there is so much research on oncology and diabetes and pain management.

There was just this huge gap in food allergy and both Dr. Sharma and I, we, I think we really align on liking to take systematic, iterative approaches to things. So while I was developing this clinical program with him and working with patients and therapy and consultation liaison settings, I felt like, oh, I need to jump in and create something immediately to help everyone, but that's not the the best way to do it, right? We wanna do things in an evidence-based way. So some of our initial research really was around understanding from patient perspectives. What's challenging about food allergy and what do they need?

So we work together to recruit over a hundred parents and young adolescents with food allergy to really understand , both from like quantitative measures about quality of life and anxiety and just self-care every day, as well as qualitative, really in-depth interviews to understand what is it like to have food allergy, and what is it that you need?

And as Dr. Sharma also mentioned, the two of us have been very aligned on the health equity and disparities aspect of this. And even when looking at what research existed, when we started this, we saw that there were big gaps in just who is participating. And this is kind of a theme I think in food allergy research, is that we have a lot of convenience samples. We have families who tend to be white. We have families who tend to represent higher income brackets, but that's not our clinic. Our clinic in the DC area is incredibly racially, ethnically, and socioeconomically diverse. So from the start, we wanted to do research that also reflected all of them.

So the research that we do, I like to joke, is kind of slow, but we think it's really high quality because we're taking the time to like be in clinic and get to know families and answer all the questions they have about research and like how they're gonna be respected and treated. And so, the papers that we've published together have really reflected what I believe is our patient population and it's a unique set of data that the field doesn't have as much access to, I think. That's kind of where it all started, documenting what's going on in this diverse patient population.

Dr. Whitehouse:
And then can you tell us what you started finding together as you made that conscious effort to get that information?

Dr. Herbert:
Yeah, so I'm really proud our, our research has, as I said, reflected our patient population. And so among this cohort, we were hearing a lot of themes coming up. So, as you might expect anxiety about allergenic exposure, challenges navigating the social aspects. So can I participate in something?

Can I communicate and advocate for myself as well as thinking about just this kind of constant stress, which even someone who's not anxious about food allergy, there's so many daily tasks that they're stressed about it. And that's, that's very normal and expected. And we also heard this really clear desire for connection with other people that have food allergy.

And a desire from parents to get help transitioning care from them to their child. And so we think about kind of, how do we scaffold. That responsibility that parents are taking on so that kids feel really confident. Most of the work that we do is about how do we empower families to find the right balance of food allergy integration into their daily life.

So what are their values? What are their hopes and joys in life, and how can we help them do that while also staying safe? And what I love about our relationship, Dr. Sharma and I, is he understands that medical piece so well, that he's constantly able to tell me what I need to know, what we need to keep in mind, how to keep patients safe.

And then I can take that from the psych perspective and be like, how do we translate some of this into daily life? So it's a really wonderful collaboration in that sense.

Dr. Whitehouse:
Yeah. Dr. Sharma, can you do that a little bit for us now and give us that same psychosocial perspective, but from your medical lens and what it looks like to you?

Dr. Sharma:
Yeah. You know, I think part of what I find really impactful about being able to take care of patients with food allergy is that it's a chronic illness, but it's one that doesn't always frequently lead to morbidity. What I mean by that is that what we're always worried about is that there could be an accidental food exposure that leads to a reaction.

But much of what we're doing from the medical standpoint is monitoring the progression of the allergies and trying to identify is it changing? Is it perhaps improving? Is it getting worse? But coupled with that is kind of this worry, well, what if an allergen exposure leads to a severe reaction, in food challenge settings?

So that's where we might bring patients into the clinic to intentionally expose them to small amounts of the food to see if they may have outgrown their allergy. Medically, we were observing that sometimes it was difficult to decipher whether the symptoms patients were exhibiting were related to actual allergic reactions or whether it might be related to anxiety. And I think that that's just one example of where there can be this very complex interplay between the biology of allergy and the physiology of anxiety. And trying to identify ways that, one, that we can recognize it, but then secondly, that we can also proactively respond to that. And so one of the ways in which I think our collaboration both as medical professionals but also behavioral health professionals, is in our food challenge clinic. For example, we have psychologists present, and if an advance of a food challenge appointment, we identify that a patient might benefit from having psychology there.

We will specifically refer them. And then if in advance of that challenge it would be helpful for them to meet for therapy, to help deal with issues of anxiety as the food challenge is approaching, we'll have that all lined up. And then on the day of the challenge, we're not just reacting, but we're proactively anticipating what can we do to support patients through this medical procedure.

And as the field has evolved, food challenges are now just one procedure that patients might come in for. Now, they might come in for oral immunotherapy or they might come in for a treatment with a biologic for their food allergy. And so what I, what I really love is this opportunity to kind of look at the medical aspects as the field is evolving, but make sure that we're anticipating and being thoughtful about what do we need to do.

From a behavioral health standpoint to make sure that patients are well prepared and their families are well prepared to engage in the medical setting. We're in the midst of a really exciting time where there's a lot of advances in terms of treatment, but being thoughtful about, well, how really are these treatments impacting populations at large?

Is everyone getting access? But not only that, how are we measuring the holistic impact of these treatments, not just in terms of the medical outcomes, but the behavioral health outcomes. And, and that's where I think kind of this collaboration, looking at food allergy from both the medical and the behavioral standpoints is really fruitful.

Dr. Whitehouse:
It makes me so excited to hear about. Is there a formal screening process that you do to identify who needs it, and then what do you provide that helps make the process smoother and I assume have better outcomes with whatever the procedure is?

Dr. Herbert:
Mm-hmm.  Our allergy psychology team includes two full-time psychologists, and then we have trainees that rotate with us as well. So, there are several of us. That being said, we have, is it seven outpatient centers? Right now we have over 6,000 patients with food allergy. So that's a lot right to filter through and we don't necessarily ask every single patient like a screener about anxiety or quality of life and things like that, in part because I think we have a responsibility to respond when we see that someone is struggling and like it's, we don't wanna just ask and then do nothing. So we have a series of handouts that are available to everyone about food allergies and development and mental health that anybody can give out.

But our team also routinely engages in trainings and education with our providers and our nurses and our techs. So we are physically present in clinic a lot of days. And we do these trainings so that folks know what can psychology offer to patients? What does it look like? How would they know as providers that someone might benefit from meeting with psychology and how to do that. So we have like a very specific referral process where they can send them to us either for outpatient therapy or for consultation, more generally or for support with oral food challenges or starting a biologic or oral immunotherapy. So once that kind of filters through, then we reach out and we triage and we see what do families need and how can we help them?

So practically speaking, during a given week, we have two days a week when psychology is automatically part. Of our Oral Food challenge clinic, and we have some families that are prospectively scheduled because we know they would like psych support. Otherwise we meet with everybody and there we do conduct screenings of quality of life.

We screen them for food insecurity, and we provide feedback based on that and like brief interventions for families that need it during the food challenge to help them really ultimately answer that question, am I allergic to this food? That's what we want them to be able to leave knowing. Then beyond that, we also have outpatient therapy.

So we meet with families via telehealth or in clinic. And a lot of what we're doing is I would call like CBT that's adapted for food allergy. So, we are certainly using the principles of CBT to guide us, but there may be some really fun specific allergy ways we do that. For example, a procedure I love called allergen proximity challenges where we have kids gradually get comfortable being near an allergen so they can see I can safely be by this allergen without having an allergic reaction.

And, I love doing these 'cause there are very simple things that we think are little, but they're huge to kids. And like a classic example of this is a kid who might be really scared to eat in the cafeteria with their friends. They want to eat with the nurse or they have a table by themselves.

So we take steps to help them see like, oh, I can eat next to my friend and be included and have that joy of every day being with my friends in the cafeteria while also feeling confident.

Dr. Whitehouse:
Yeah. I wanna just clarify. People who listen to my show probably already know, because we talk about it, but CBT is cognitive behavioral therapy. Can you give the summary of what that looks like? I think those names are intimidating to people.

Dr. Herbert:
Cognitive behavioral therapy is a way that we understand the way that our thoughts are affecting our feelings and our behaviors and how they're all interconnected. And so in the context of food allergy, we're thinking about those. What if questions like Dr. Sharma referenced, so how are some of these worries affecting the decisions that I make about.

Engaging in certain activities, how is it that I might be avoiding things that I really enjoy? How can I engage in relaxation strategies to help myself engage in them? If I'm noticing like physiological anxiety symptoms like my heart pounding very quickly, sweaty palms, breathing very quickly, how can I figure out is that an allergic reaction versus anxiety and know what to do in those moments. So it's all about that connection among those three different things. And we really lean into the food allergy pieces of that 'cause it is a really unique thing, right?

We as psychologists talk a lot about phobias, irrational phobias, but there is a very real risk of allergen exposure in food allergy. So, we're not telling people," this will never happen to you." We're telling them instead, " how can we be prepared and how can we navigate the world? Holding that little bit of risk while still doing the things that we wanna do that are important to us.

Dr. Whitehouse:
Perfect. Thank you for clarifying that. Dr. Sharma, can you touch on what you're seeing in terms of the medical outcomes for the kids who have this support?

Dr. Sharma:
Yeah. You know, it's interesting. I think that part of what I garner incredible reward from is when I see a patient who was really struggling with anxiety and then they see Dr. Herbert's team, particularly if it's an advance of a procedure, like a food challenge on the end of that, when they're able perhaps to introduce the food to the diet that they previously, you know, didn't have in the diet. If it's from the standpoint of a treatment where they embark on a treatment and perhaps see tangible improvement in their ability to tolerate various foods, there is nothing more rewarding.

To think that that might have been a child or a family who didn't engage in those medical treatments, because there was anxiety because there was fear about the potential outcome of the treatment or the procedure. It really makes a huge difference. All of us on our team are incredibly lucky, as you alluded to, that we have access to these resources.

And we recognize that that's not always the case for other allergy providers in the community. I think what Dr. Herbert and her team do an excellent job of at the local level, they're educating us. And so they're teaching and training us about how to look out for those signs that maybe this is a family or a child who would benefit from their services.

And so I feel as though over the years we've really become very efficient at kind of identifying children who would really benefit from a referral at the more, national level. Her team is also taking this across the country and educating healthcare professionals at other institutions and community practices everywhere about how to embed this within their clinics.

As an example, at the upcoming Allergy Academy meeting, we just found out that her team was accepted to present about how to embed psychosocial services within the food challenge setting, and that's something that through presentations, through publications, hopefully there's gonna be dissemination of this knowledge so that other allergy centers and allergy practices get a little bit more familiarity with the benefits of these services, and how really to make sure that patients can access them.

And that's always been part of our goal. We recognize that we're based at one center in Washington DC but from the research, whatever we find might be impactful and helpful for others in the field, we wanna make sure we disseminate that and get it out as broadly as we can both to providers, but also patients and families themselves.

Dr. Whitehouse:
Yeah, that's so exciting to think of more people having access to that information because it's so important. And I assume from what I know and the physicians that I've interacted with, that's not something that you get a lot of training in right, recognizing and identifying and addressing these things?

Dr. Sharma:
Unfortunately not. I think things are evolving. And so for example, looking back at my training in fellowship to become an allergist, there was very little, if any, that really focused on how to identify psychosocial concerns. I think that now that it's become something that we know more about, it definitely is incorporated in a lot of what we do training our own fellows.

And Dr. Herbert's team gives lectures to them and some of them have even done projects with her team in terms of the research. So I think that it's becoming increasingly common to receive this sort of training, but there's still more work that I think we collectively need to do.

The other piece of it that I think is really fascinating is that there's this intersection between what we both are very passionate about in terms of behavioral health and mental health implications of food allergy, but also health equity and that has been I think something that in recent years has also garnered more attention because the field of the body of research is advancing and so that's exciting to see as well, that we're starting to have more recognition of what the differences might be in food allergy in various groups.

Dr. Whitehouse:
That's another difficult one to even know where to start with. Dr. Herbert, you mentioned food insecurity is one of those big things. I think there are a lot of aspects of that. How do we even begin to talk about that and where do we start?

Dr. Herbert:
Yeah, I think we can talk a little bit about just what we're doing with respect to food insecurity in our clinic, but then I think we could also tell you more about our FORWARD study that we're collaborating on, because it's really kind of the national study that's leading the way in some of this.

From a local perspective, and I'm speaking for us, but I know there's a lot of other clinics that really care about food insecurity around the us So this isn't, this is like just a snapshot of what's happening, but there is a validated two item measure called the Hunger Vital Sign that a lot of clinics use to assess food insecurity.

And we decided in our clinic that we should use this. To talk to every family about their needs, but we should also add questions about allergen specific food insecurity. So for each of those two questions, we have added one that's about allergen free food. So it'll ask about like in the last couple of months, have you had any times when you have felt like your food was running out or you wouldn't have enough to eat? And we ask about allergen specific food there too. So we rolled this out in our clinics a couple years ago. Our nurses are so helpful with this. Our techs, they really help by handing out these laminated sheets for us.

And then anybody who endorses even like a one out of. Four on this. So like saying sometimes this is true, we provide them with a grocery gift card that we purchased through funds that we've raised through our Race for Every Child at our hospital. So we've been able to allocate the money we raised from that to a health equity fund.

So those families, they get a grocery gift card right away. We also have a resource sheet available in English and Spanish that's specific to Washington, DC or Maryland or Virginia since we have families all around and they can get connected to our social work team. We track all of this. We talk about it monthly. In our health equity team, we find more gift cards as we can. We fundraise some more and really try to make sure that anybody new to the team learns about this because we're really passionate about just providing something. And again, it's that idea that if you're asking, you need to do something like it is.

Very irresponsible of us if we only find out. Yes, we wanna see families where they are, who they are, and meet them and connect with them and provide something. So that's just a little snapshot of what we are doing. And I, I know that this is a very big topic. I was at recently a neighborhoods day that was hosted by FARE Food Allergy Research and Education.

There was a whole hour and a half, two hour long conversation about food insecurity where folks at other institutes were talking about what they're doing too. So, we definitely recognize that it is very challenging if you have multiple food allergies to navigate food banks, food pantries, places like that, and find things that are safe for your child and for you.

Dr. Whitehouse:
Yeah. Dr. Sharma, what other aspects of health disparities specific to food allergy do you want people to understand?

Dr. Sharma:
Yeah, great question. I think part of what we're learning and we want folks to understand is guided by research.

And that's kind of the theme may maybe runs through a lot of what we've been talking today about several years back. There really was not much research at all about disparities or health equity within food allergy. And Dr. Ruchi Gupta, who is the head of the Center for Food Allergy and Asthma Research (CFAAR) at Northwestern, she spearheaded an application for a study called FORWARD.

And so she's the overall primary investigator for this study and it's a multi-site study with food allergy centers across the U.S.  that has amassed the, you know, very large, it's over 1500 children now with food allergy of diverse backgrounds. And so within the study there was the intention to be able to compare food allergy outcomes across different demographics.

And so there's, in the study, a very diverse cohort of black children, white children, Hispanic children, Asian children. With food allergy, and as Linda alluded to, a lot of the early research in food allergy really wasn't very diverse , and so we were making clinical decisions based on data that was predominantly conducted among a white population.

And so with the advent of the forward study, which is funded by NIH, by NIAID, we've been able to start to gather more and more evidence of what really, the lived experience is among a diverse group of patients with food allergy and their care and their caretakers. And the study over the years has really yielded helpful information that can have very practical implications in the clinical setting.

So I remember one of the very first findings that have been released years back was looking at the age of introduction of allergenic food and whether that appeared to differ based on race or socioeconomic status. We now know that there's a lot of evidence that early introduction can be protective.

That we want parents caretakers to introduce their children, their babies to potential allergens early on as a way to try to prevent food allergies from developing. And what the data from forward showed that there was a significant difference in the caretakers. Black caretakers, were having age of introduction of allergens like peanut, significantly later than white parents. That also differed based on socioeconomic status, where those with lower income levels were introducing foods later on. And that observation could potentially then explain some of the disparities that we see in terms of the actual prevalence of food allergy, because there's lots of studies that have been conducted.

Not only through FORWARD but Dr. Gupta and her team and many others have shown that the prevalence of food allergy does differ based upon these demographic factors. And even the severity of food allergy can differ. So I think findings like that really lead us to then question, if we're observing that there are these differences, why are they there?

And when we have advances in the field when guidelines change, how are we ensuring that everyone anyone and everyone who's raising a baby has a child, knows that this guideline has changed or if it relates to new treatments years later, one of the more recent studies that came out of FORWARD looked at familiarity with oral immunotherapy and similar findings that black caretakers of patients with food allergy had significantly lower familiarity with food allergy. A large proportion of them had never heard of OIT for food allergy. That also was found in lower socioeconomic groups as well. So as the field advances and were making breakthroughs that are perhaps preventing food allergy or are treating food allergy, part of what we are driven to do is to make sure that those findings reach as many folks as possible, and that we're ensuring equity in terms of access to these treatments, access to preventative strategies. That really, I think is the advocacy piece of a lot of what we do. We are clinicians and researchers, but we also consider ourselves patient advocates.

And we want to make sure that as advances in the field occur, that we get the word out so that there is equitable access to these advances.

Dr. Whitehouse:
 Thank you so much for that work. It's so important and I think a lot of us who are just rushing through our daily lives just don't understand that that's the dynamic that we're facing. You mentioned, OIT and I would love it if you would talk a little bit more about that and getting everybody access to these treatments that could be so life changing.

Dr. Herbert:
That is a huge question. But, but it's an important one, right? Like, we shouldn't be afraid of these types of questions. We need to ask ourselves these things.  I really think a lot of what. We should be focusing on, can be informed by the social determinants of health, right? So we know that there are different elements that determine how healthy we are, what goes into what treatments we have access to, the choices that we make, our health behaviors. And so we have these factors to be thinking about like health literacy, prior knowledge about food allergy. We need to think about just simple access to allergists. So some families, it takes so much effort just to get in to see a tertiary care provider, like an allergist, and get a diagnosis.

We have to think about like our insurance structures and economic factors like. Are you able to take time off to? Do you know the thing that is the treatment, if it requires multiple appointments, do you have the financial ability to pay for something out of pocket if you believe that it's right for your child, but insurance doesn't cover it?

And then what are like our neighborhood and built social environments as well that structure this, like are you able to get access to allergen-free foods or do you live in a food desert? Do you have access to schools that support you in the type of food allergy care that you need? Do you even know like what a 5 0 4 plan is?

Do you have things available in your language that you speak? So I think that there's a lot that we as providers need to be examining in ourselves too. Like, how are we offering these things? How are we talking about them? How hard is it for a family even to get to us? And if we can start. To take some steps backwards and focus on some of those initial things.

That's for one, gonna get research treatments and diagnostic tools that meet the needs of families, which then means perhaps when it gets to the point of dissemination, like it will be more available and you know, it'll be more equitably delivered. We wanna be thinking about all these things holistically from the start, rather than saying at the point of FDA approval, now how do we get this to everybody?

Dr. Whitehouse:
Such a great point. Dr. Sharma, what do you have to add to that?

Dr. Sharma:
Yeah, I think as Dr. Herbert said, grounding this in what we know about the social determinants of health, I think is so important because in many different chronic illnesses, if we just follow that framework, it really guides us in terms of how to be thoughtful about this upfront.

And I think what Dr. Herbert said about being mindful of this at the very start is important because thankfully we're at a point in food allergy where there are a lot of advances that are happening currently in recent years, but we need to ensure that we're coupling those from the very beginning with consideration of the social determinants of health, and in particular how those might influence access to therapy, familiarity with new therapies, ability for patients to actually get treated with them. I think that those are oftentimes an afterthought, unfortunately, because we're so focused on just trying to advance the field medically and get these new therapies out there and, and really bring them to market.

But if we, if we're not thinking about that upfront, then inadvertently we could be creating more, more inequities. Really be mindful of that so that we can, we can ensure equity across the board, as you said, whether it's to prevention, diagnosis, treatment and new therapy.

All of that requires a lot of forethought just in terms of how we structure not only the research, but also the clinical care and the rollout of new clinical care.

Dr. Whitehouse:
And it sounds like that's a big goal of the FORWARD study. Can you tell me what are the aims and looking ahead, what you wanna do with that information?

Dr. Sharma:
Yeah, so the FORWARD study, it's in its currently second iteration. So the grant initially was a five-year grant. We're now in year four of the second five years. Hoping for renewal again to continue to follow this really unique cohort of children and I think part of what we've recognized, Dr. Gupta and the entire team is that this is such a rich cohort in terms of understanding how food allergy changes as children age. I think initially there was a great emphasis on really looking for those differences in terms of the initial presentation and then the progression of food allergy, the psychosocial impact,, but as the cohort has aged, I think we're also really interested in how does the experience of food allergy holistically change as children grow into adolescents, and then as they become young adults. And, and that's something that there aren't many other opportunities to study that in such a robust way.

So I think that that's looking forward, one of the things that really is a primary objective, of FORWARD as we look to the next chapter. And then obviously just continuing to look for opportunities to conduct research on this data set that will have direct implications for clinical care and for policy, because as we know, so much of the daily experience of food allergy is driven by policy, whether that's at the local level in the setting of a school or a camp, or a daycare, a childcare facility, or more broadly at the state or the federal level. Dr. Gupta has always had, as one of her goals to make sure that we're conducting research that will then inform what the policies should become, and, and I think that that is something that as we look to how to address some of these inequities, that's where the data is so powerful, because in order to drive policy change, we have to have it grounded in evidence. We have to be able to prove that this policy is needed based on what we're finding in the research.

So I think that that's where a lot of the work is currently heading. And then, as Dr. Herbert has alluded to, I think that there's this huge opportunity really to look as new treatments are expanding, not just at what's happening at the immunologic level, at the cellular level, but really looking more holistically at, the psychosocial implications ,and a lot of times a lot of what we focus on is just the quality of life. But as Dr. Herbert can much more eloquently explain, if we're only focusing on quality of life, we're missing perhaps a much broader assessment of the experience of patients as they're undergoing treatment with these new therapies.

Dr. Whitehouse:
And will you add your comments to that Dr. Herbert? What else might be missed that we don't want to miss?

Dr. Herbert:
Yeah, so I think again, going back to what patients say is really important, and there there's been a couple studies that have just looked at like, why do people participate in clinical trials about food allergy? Like what are they hoping to get? And the thing that comes through in a lot of the. Is the fear of allergic reaction, the fear of anaphylaxis, the fear of accidental exposure. And so quality of life is very broad, of course. But like I think that one of the things that's really been missing in some of this is understanding like, is there a change in fear and anxiety? What does that look like? And sometimes it's messy to measure that, right? We have to do like this qualitative work. So Dr. Sharma and I are really excited about a very recent collaboration we have going to look at omalizumab or Xolair and how this is being rolled out in our clinic.

And so in the initial OUTMATCH study that informed the FDA approval, they looked at quality of life, but they didn't really look at this fear component, these things that families are really saying that they want. They want to be able to navigate the world without fearing that at any moment there may be accidental exposure. So for some of them it's not about like fully ingesting a food, right? So in this new project that we have, we are gonna be recruiting families who have decided to start Xolair and then to follow them. So we're gonna ask them really in-depth questions like, why are you doing this? How did you make this decision? What was driving this? And in a chart review that we did recently that we're presenting at AAAAI the American Academy of Allergy, Asthma and Immunology meeting in February , we're showing that most of these parents have kids that have more than one food allergy and have had anaphylaxis that's required treatment. And so we wanna understand, is that the cohort and as they then go along, how are they feeling about this? Is their anxiety decreasing? Are they feeling less fearful? Are they expanding what they're doing? So we wanna understand, how are you approaching things like precautionary allergen labels? How are you approaching places where there may be cross contact? How are you approaching foods that might feel adjacent to your allergen that maybe you've avoided? Because it's easier, like for example, maybe you're allergic to walnut and pistachio, but not other tree nuts, but you avoid all of them because it's just really tricky.

So we wanna understand really in depth, how are you making decisions? What's maintaining you in this treatment and what happens over time? I think that's really what is important, right? It's not just, do you start the treatment, but what is it like, and will you continue to do this? And does it affect your life in the way that you want? It's very exciting.
Dr. Whitheouse:
Like you said, it's so obvious that we should be asking these questions, and yet the focus, as you said, Dr. Sharma, isn’t just, does it work? You know, what are the medical outcomes? But it's so much more complex.  So thank you for asking such important questions and getting such important information about all of us out here who are just trying to navigate something so complicated.

Dr. Sharma:
Yeah, I think, I mean that piece that we kind of started there in the beginning when we were talking about how each of our careers evolved in the initial intersection. And it really did start with patients, because we were hearing over and over again, more than 15 years ago from our patient families, that they wanted more focus on the psychosocial impact of food allergy, and that's what prompted us to thankfully recruit Dr. Herbert. And then for her over the years to build her clinical program and the research program. And I think now with research, really grounding the priorities for research and what patients and families prioritize is so important.  Over the years we've done projects where we've formally measured and asked patients with food allergy.

What do you think is most important for the research to investigate? Should we be looking more at treatment or should we looking at prevention or should we be looking at mechanism immunologically? And then even if we talk about treatment, like then asking them, well, ideally, what would be the goals for treatment? What do you believe is most important? Is it to be able to fully and freely eat this food? Or is it really to not have to live, as Dr. Herbert said with that constant fear of a reaction. And I think that that's what makes this current time so exciting is that we really are at a moment where we have the opportunity to significantly change the experience of food allergy for many kids and their patients and their families.

I hope that the research is really gonna be grounded in that patient perspective , and remembering that we want to make sure we're doing work that patients and families feel would actually impact them. There's a lot that we could study, but what should those priorities be?

And grounding the work in those priorities, I think is so critical at this moment.

Dr. Whitehouse:
It's so amazing and as an allergy parent, I can feel it as you're sitting there talking like,  yes, we want you to know this. We wanna understand this. It's exciting for us to feel included, to feel like our voices are a part of the research. So thank you for your work on that.

Dr. Herbert:
 I'm also really proud of the GAP Study. It's a global study of psychological aspects of food allergy. And the reason I'm so excited about this project is that, much like I was telling you when we assessed for food insecurity and hear about it, we need to do something.

For years, I've been assessing how distressed are people about food allergy and felt really responsible to do something. I can't just hear about it and not do something on a broader level. So the GAP study is a study that is, as I said, global. We have data from across the world that documents that there are psychological concerns with food allergy.

And we are about to launch a pilot study of a free online psychological intervention for caregivers and adults with food allergy and our goal is in the next couple of years to have this free tool. It's called Facets, F-A-C-E-T-S. That will be available to anybody in many languages. So we are really trying to make sure that when families say to us, but I don't have a psychologist in my clinic, what do I do? That we can answer them and say, guess what? We thought about that and here's something for you. It's been years in the making with Dr. Sharma helping me on my end with all these other allergists helping from their institutions.

We know that it's taken a long time to get here, but we really have wanted to do this in a thoughtful way and center the patients in it. And I'm really excited that I think we're at a turning point in allergy where we're like able to give these things back that help families.

Dr. Whitehouse:
It's so amazing that you're making that much progress and that it will be something so helpful and accessible and actionable available soon. Soon-ish? How soon do you think?

Dr. Herbert:
So really proud to say that we received some pilot funding from the National Peanut Board to do a pilot study of it in 2026. I would say within the next couple of years and then we'll be translating it. But it's already been five, four or five years in the progress to get to this point. 'cause again, we do slow but thoughtful work.

Dr. Whitehouse:
Where can people find out about what you're doing and the projects that the two of you are involved with.

Dr. Herbert:
We frequently will be speakers at events for FARE or for FAACT, which is Food Allergy and Anaphylaxis Connection Team. We also are involved with the Food Allergy Fund at times. I also love Food Allergy Canada, so I think that there's some really nice hubs of information within those different patient organizations and we really do try to bring current information to them. , The other piece of it is that AAAAI and the American College of Allergy, Asthma and Immunology, they have forward facing websites too for patients.

And so some of the things that we've developed are available there. An example is what we call the stages of food allergy. And on the AAAAI website, you can access any of these stages handouts. And what they are is information about navigating food allergy from a more psychological perspective at different age time points.

I use these in clinic all the time, and each of them is like three or four pages. They include what I hope are really helpful tips about like, how do I talk to my child who is three or seven or 11 about food allergy? How do I help them navigate social situations? So, a lot of these academic associations do have that patient forward facing info too.

Dr. Whitehouse:
Thank you. I will thank you specifically for those, because I do use those with my clients and they do find them helpful. I will make sure I put links in the show notes for everybody so that they can remember, and be encouraged to attend those events and meet people like you who are the ones doing the work from this angle.

Dr. Sharma, anything else that you wanna throw in there? I know you have so many things going on too, and I couldn't possibly have given adequate time to all of them.

Dr. Sharma:
No, I, I think, I mean, we covered a lot of ground in this and if there's any message to take away, I would just encourage folks listening to make sure to follow up with their allergy providers 'cause a lot is changing, , and I think sometimes folks have a misconception that, oh, I'm just allergic and, you know, do I need to really go see an allergist again? But the answer now is yes, you should. And, and it's important on multiple levels, just to check in, but also for us to be able to provide that information because the knowledge of what's happening in the field is something that doesn't always get out there , and so in those patient interactions, that's what we're spending a lot of time doing is just bringing folks up to date about what's available. And I can't tell you how many times that I'm talking about something and I'll ask, have you heard about it yet? And they'll be like, no, but I feel like I should have.   All of us in the field are hoping and trying to help to get the word out.

Dr. Whitehouse:
That's a perfect point to wrap up on. Thank you for the reminder. We do get kind of complacent, right?   This is not the field to do that in anymore. Thank you both for being a part of that. Thank you for being here on the show. I appreciate it so much and I, I appreciate all of your work, truly.

Dr. Herbert:
Thanks for having us. It's real fun to talk to you. Of course.

Dr. Sharma:
Yeah. This has been fun. Thank you so much.

Dr. Whitehouse:
Thank you again to Dr. Herbert and Dr. Sharma for joining me today to give us an idea of the importance of understanding the context families and patients are navigating so that we can move toward equitable care in the real world. So thank you to them and to all the other researchers who are working so hard on creating and adjusting treatment and care accordingly.

Before you go, here are some meaningful ways to take action on today's conversation. Number one, continue learning from the research. You can easily find information on your own by searching for FORWARD study food allergies or GAPS study food allergies.

If you want a deep dive, go for it on your own. And if you want a couple of accessible links, I'll put them in the show notes for you.

Number two, I want to encourage you to participate in research. Not only do we have these researchers to thank for the information, but all of the participants who've taken the time to be part of these studies. So if you ever get the opportunity, I would encourage you to consider if it's right for you.

Number three, take the equity lens with you in your own roles in your life. Consider where flexibility and curiosity might help you to better understand the people that you're working with and change the way that you're engaging. Ask more questions and ask different questions. Make room for context and remember that equitable care always starts with listening.

Thank you so much for being part of these conversations and for being open to the complexity and the depth that real progress requires.

I appreciate it so much when you share the episodes with others who might enjoy them or benefit from listening and leave your wonderful reviews and ratings to help the show grow and reach more people.

And once again, thank you so much to Dr. Herbert and Dr. Sharma for all of your amazing work and for joining me here today.

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.