Ep. 247: The ADINA Act

After her daughter Adina suffered a serious allergic reaction to a medication containing her allergen, one family decided to take action. Today, we’ll hear from Adina’s mom and food allergy advocate, Jennifer Togal, about the proposed federal legislation named in her honor — the ADINA Act. We’ll explore what this bill means for allergy communities nationwide… and how you can join the movement.

Resources to keep you in the know:

• ADINA Act Website 
  • H.R. 3821 - ADINA Act 119th Congress: Congressional website link
  • House.gov: Find your Representative
  • Sample Letter to Representative

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Transcript

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.

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

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

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

And I am FAACT's Vice President of Community relations.

When Adina experienced a life threatening allergic reaction to a medication containing her allergen, her family knew something had to change.

Out of that moment came a movement and now the proposed federal legislation known as the ADINA Act.

Today we're joined by Adina's mom, Jennifer Togal, to hear the story behind the bill and what it could mean for allergy communities across the nation and how you can be part of this critical fight for change.

Welcome, Jen, to FAACT's Roundtable Podcast. We're absolutely delighted and thrilled and most of all, very excited and interested to have you on the podcast today because we need to dig into the Adina act and all the things that you are doing.

So welcome.

Jen: Thank you. Thank you so much. Really excited to be sharing and spreading the word about our work.

Caroline: Well, we're excited to hear all about it.

So before we dive into the details of the Adina act, could you help us just get to know you and your family a little better? So, like, when did you first learn about Adina's food allergies?

Jen: So we had the sneaking suspicion,

pretty much since Adina was an infant, that she had some sort of food allergy or something GI related going on. There were a lot of little hints. She always had rash and little things going on as far as, like,

excessive GI distress that we brought up to our doctor several times and it was kind of always pushed to the side of like, oh, she's, you know, probably dealing with this, or this is probably going on.

But it wasn't until about first grade that she actually had an event that happened with school that we really pushed very, very hard with our medical care providers and actually got her diagnosis in first grade.

So at that time we learned that she had celiac disease, eosinophilic esophagitis, and an IgE mediated dairy allergy. When Adina was diagnosed, we had a situation with her first grade teacher.

And she had pointed out that Adina had been to the school nurse an excessive amount of times immediately following lunch. And there's a little bit of, you know, we think that it's because she wants to skip math.

And I. I was like, how about the pattern that it's always after lunch, and she's always having X, Y, and Z symptoms and vomiting and these rashes and all of these things.

So that was really what pushed me to get her actually allergy tested, because previously our physicians had pushed back and said that they weren't willing to do it.

And we took her to an allergist. They did do the ***** test, the skin ***** tests, and she was negative on everything on her skin test. But she was actively reacting at the same time elsewhere on her body.

So the doctor said, at that point, you know, we're gonna draw blood labs just to make sure and see. And when we were having a conversation, she said, you know, do you have any family history of celiac disease?

And at the time, I didn't even know what it was. She said, you know, let's go ahead and throw that in there too. And I said, okay, you know, we're already pulling blood.

Why not just do it all, test for everything? And sure enough, I got a phone call. I want to say, like, less than 24 hours later. And the doctor said, you know, I can't confidently say it without a biopsy, but I've never seen numbers this high for celiac, and I would definitely get tested.

Here's, you know, recommendations for some upper GI doctors.

And she also has dairy allergy, which is when we identified that. Then we got into a scope about a week later. It was really fast because of how high her numbers were and how quickly she was losing weight at the time and the other things that were going on medically.

And we did the scope. The doctor came back and said, not only does she have clear signs of celiac disease by, like, there's inflammation and, you know, the symptoms that we're experiencing.

Plus her celiac panel that came back, she also had three intestinal ulcers. And. And she also showed very clear signs of having intense eosinophilic esophagitis,

which I didn't. Again, that was a bonus diagnosis. Had no idea what it was. I was remember sitting in the hospital. We were at Children's hospital, Googling it to try and find out what it was.

And so began our journey. And, you know, from that day, we immediately cut out gluten and dairy, because obviously she was also allergic to dairy and gluten from the celiac confirmation and went through our process of that.

So that was really the journey of getting her diagnosis. And it was long and arduous, but I am so thankful that we got all of them all at the same time and we were able to get her feeling better so quickly.

Caroline: Thank you for sharing your background so we could just get to know you a little bit here.

So now this is a big deal, the Adina act and all this work that you've been doing for years now. So what was the situation that ignited your family's desire to change how medications were labeled?

Like what triggered all of this work?

Jen: Yeah, so Adina was away at sleepaway camp and, you know, like most kids, they end up getting a little bit of camp crud. Except in her case, it was actually strep throat.

We got a call late in the middle of the night, you know, one. One weekend. Then they said, you know, she has strep throat. We need to give her a prescription medication for it.

It's, you know, a on hand medication. So we don't have the, like, capacity to reach out to a pharmacist or things like that. Cause oftentimes summer camps will get medications in bulk for the kids.

So they have like the basic things.

They did provide us the name of the manufacturer, the phone number. We tried to call them. It was during the weekend. They obviously weren't open to have any conversations.

We called every single pharmacy that we could get ahold of to try and get us to give information about it. And obviously because they didn't dispense it, they didn't want to give us any information.

And. Or they said that they couldn't because they didn't have it.

We also reached out to any friends or family that we knew that were in the medical field to try and give us insight into whether or not this would be safe because we had the ingredients list.

But as anyone who has read the ingredients list on medication, it's very coded scientific names that provides very little transparency and understanding around what is this 12 letter word that I'm reading?

Is this soy? Is it wheat? Is it milk derived? How. How do I know that what I'm giving my child is safe? And when you Google those ingredients,

even Google says, well, it could be any one of these things. It really depends on the manufacturer.

We chose, you know, it was Saturday at that point, and we chose to give Adina the medication because knowing from our past experience and trying to get the information from pharmaceutical manufacturers, it could be at best,

Monday afternoon before we got an answer. But more likely it would be longer than that because oftentimes we have to get somebody else to get escalated and have further conversations.

So we chose to have camp give her the medication and keep a very close ey.

And very long story short, we got a call not long after she took the medication that her blood pressure had dropped to critically low. She was having intense GI distress.

She was lethargic. She was losing consciousness.

There were just a number of symptoms that were going on. And there's nothing more scary than receiving that phone call when your child is hours away from you in a different state in the middle of the night to say she's no longer medically stable enough to remain at camp.

And it's not if she's going to the hospital,

it's how are we getting her there? Either we can call an ambulance or our staff can drive her. And that's a phone call you never want to get as a parent.

Even now, to this day, I still get choked up thinking about it. Like, it was really, really terrifying situation to be in. And I remember I was the one that answered the call.

Seth was still asleep, and I literally ran out the door, and I. I was halfway down the driveway before I realized I didn't have shoes on. And I had to run back in and get it.

And Seth heard me, and he was like, where are you going? And I was like, camp, gotta go. And I just bolted. So I'm like, you have to call me.

I'm not waiting for you to get up.

Caroline: So that is true mama bear mode right there. That if that isn't the best example of don't mess up, mama, now she is on a mission. Oh, my goodness.

Jen: I was like, I don't have time.

So thankfully, she went to the hospital.

The hospital that they wanted to take her to was about an hour away because they wanted to make sure she was at a facility that could handle her needs at the time.

And she was in a rural area of the state that she was in. So that's why it was the case.

And she was watched and recovered. We got her home situated, and from that point, we started calling the pharmaceutical manufacturer. We tried to get further information around what was actually in this medication that caused this reaction.

Not only did the pharmaceutical manufacturer refuse to answer our question without including a licensed pediatrician or our pharmacist,

once we did get our pediatrician involved, which was very quickly, they escalated it to their next level.

It took three and a half weeks for the pharmaceutical manufacturer to respond back with a refusal to answer if there was anything in it. And that was the moment where I was really done,

where I'm like, this should not, first of all, take this long. I should not have to include a licensed medical representative to find out if there is something in this medication that if it were a processed packaged food item, I would be able to know without any question.

From that point, Seth and I started reaching out to our representatives, and we ended up getting in touch with Representative Dean Phillips, who, if you're familiar with his work and history, he has previous experience in the food industry.

So he owned a couple different food brands and a coffee company.

And so he's very familiar with the food allergy world and what's required in labeling and all of those aspects. And when we met with his staff and himself,

he was shocked that this wasn't already something that was in place and saw that it was a common sense item that needed to be changed. And he jumped right on board.

And his health staffer automatically said, well, what if we just made the medication labels the same as they are on food and included gluten? Would that suffice? And I was like, exactly.

I don't need the proprietary information.

I don't need them to change the formulation. I just want access to the information so. So that families in positions like mine can easily, 24 hours a day, seven days a week,

be able to identify if there's something in this medication that's a food allergen or gluten that could hurt more than it's going to help. And that's really where we ran with it.

And it didn't take very long before Dean Phillips and his staff had written the language of the bill and they included Adina's name and the title of it, which is wonderful.

And I just really thankful for the work of his team and how it it went there. And then Kelly Morrison reintroducing it into the current Congress, which is great.

Caroline: And so then it took off. So now to catch all the listeners up, what is exactly the Adina act, like, what is in this bill? And then how will it impact our community?

Not only people's food allergies, but just the entire community.

Jen: Yeah. So the Adina act, long name is Allergen Disclosure and Non Food Articles Act. It is a federal bill that will require all over the counter and prescription medications to be labeled in plain language for all major food allergens and gluten containing grains.

And as a whole, it will help not just the food allergy community. But also the food allergic disease community on a broader scale by like FPIs, celiac disease, eosinophilic esophagitis, really making sure that it's labeling, like I said, in plain language.

You don't have to have a medical degree or a clear understanding of pharmaceutical ingredients and their derivatives. To be able to look at it and say,

contains soy, contains milk, and just make it easily accessible is really the goal.

Caroline: This is just so important. I mean, a couple years ago I had a medical procedure done and they came over and they said, wait, before we give you any anesthesia, do you have a peanut allergy?

And I was so surprised. You know what if I did, this would have been a big problem, clearly.

So I totally can see how critical this is. I mean, and actually with my kids, with there were food allergies, I remember struggling at the dentist's office when they wanted to put sealants on and calling a friend who was a dentist and then calling some personal friends who are pharmacists and asking them to dig a little deeper on some of the medications.

And Even my pediatrician, 25 years ago, you know, scratching his head a little bit.

Jen: Yeah.

Caroline: On a few items. And so it's really exciting to see this happen. But wow, it's been a long time.

Jen: It has, it has. And you know, even ironically,

I not that long ago had a Facebook memory pop up that was one year and two days from the actual event that occurred with Adina. And what sparked the Adina act, it was this lengthy post about my frustration in trying to find an over the counter medication that was safe for her allergens.

And the round robin that you go in as a food allergy or celiac mom trying to get that information,

where I'm like, this is almost foreshadowing what happened. It was this whole lengthy post about how, you know, the pharmacist told me that I need to call the manufacturer. The manufacturer told me that I need to call my doctor.

My doctor told me that I needed to call the pharmacist. Like, it's just this, nobody is able to provide clear and capable information readily accessible. And it's just mind boggling to me that this has taken so long to happen.

Caroline: Exactly. Because it's critical. Because if we're taking medications, that means something is not quite right. And so we're not in our shape possible. So this is obviously highly critical.

So now this bill is actually federal legislation. Right. So if you can explain to listeners, like the difference between state and federal what ADA is, and then where is it in this process?

I mean, you have become the in house expert now.

Mom advocate. MOM is on a mission.

Jen: Yes.

So the Adina act is a federal bill, which means that it would cover nationwide, every state, every pharmaceutical manufacturer, everyone within the U.S. regardless of residence, location, city, state. As far as where the bill is at, it was recently introduced about a month ago by U.S.

rep. Kelly Morrison in the third district of Minnesota. As far as our progress from the last congressional session, for those that aren't familiar with federal bills and the way that they work,

if you don't pass within the current Congress that you're in,

everything gets wiped clean and you have to essentially start over.

So the initial introduction was In June of 2023, which was in the 118th Congress, which we concluded with 54 bipartisan co sponsors landing us in the top 5% of all legislation, which is incredible.

We also had an official endorsement from the Problem Solvers Caucus, which is a very big deal because that's again, a bipartisan group that says this is definitely an issue that needs to be dealt with.

In addition, we had over a dozen major national organizations that backed our efforts.

It was reintroduced, like I said, by Kelly Morrison just this past June of 2025.

Currently, like I said, we have to wipe clean and start over with all of our co sponsors. So we currently have seven co sponsors on the bill. But the great news is that from our math, 41 of the 54 that were on the bill last session are still in Congress.

So really, at this point, we just need to make sure that the people that live in their district are calling and reaching out to those representatives saying, hey, same bill,

same problem. Join back on and let's solve this together.

Caroline: Wow. First, congratulations on having that many co sponsors. That's incredible.

Jen: Bravo.

Caroline: Okay, so now as I'm listening to this and I live in the state of Nevada, so we can just use me as an example.

So now I'm listening to you right now. I'm excited.

We need this. I want to get involved. What do I do? Like, how do I find out who my representative is?

How do I speak to whoever I should be speaking to to say, hey, look, I need you to support this and this is why. So please bring us to the light here.

How can we get behind you and make this happen?

Jen: So as far as the best thing to do, so I kind of consider it as good, better, best. So the best thing that you can do is reach out to your US Representative and actually ask them for a meeting,

either virtual or in person. But having that meeting is the best option to really get in front of them, to be able to share your story, your heart, your passion,

even if you're not immediately directly affected. Someone that you love or care about or care for,

share that and why it's a important piece for you as their constituent, which is really important because being the constituent is a really critical part.

If you can't get a hold of them to have a meeting, the next best option is by calling and writing. I would say calling is probably the next best because again, you're able to share your story, share the tone, have that conversation directly with them, and they do catalog those calls.

So it's really important to share that information and to not just call once. I like to say that kind persistence is the key to our success.

And if you call once a month, that's ideal.

You want to do more than that. That's extra points.

The next would be sending any letters, whether that's emails or even writing if you're old school in the sense of writing a handwritten letter or postcard or something like that.

We've had some people do those things and then obviously, you know, sharing on social media, making sure that any friends or family are aware of the bill. We have yet to come across many constituents that have any hesitation about having this pass.

So really just, it's a. Getting the word out is really a huge part of making sure that those who this affects or might be impacted by it really know that it's available for them to help participate in the advocacy work.

Caroline: This is incredible instructions and I love where you were saying, even if you don't have this experience with allergies or these diseases, but there's somebody you love or somebody you work with,

their story is your story and how you see them struggle and how you want to protect them.

I mean, so truly, all of America should be lighting up and getting excited about this because pretty much everybody knows somebody.

Jen: Yeah, absolutely. And it's really easy to find your representatives. All you have to do is go to house.gov and find your representative. You type in your zip code and information and automatically populates with who your congressional US Representative is, as well as their local offices as well as their DC offices.

So you can call or reach out to either one of those Perfect.

Caroline: And listeners. I'll make sure in the show notes I have all the links that you'll need and Jen will make sure as well that we've got all the social links and everything that you need so you can get in there and get active and really make a difference.

I mean, it's exciting that we all have this way that we can make a difference. Piggybacking off of your hard work because you are putting in thousands of hours. I'm not even going to say hundreds.

I'm sure you're into thousands of hours and so we can get behind you.

Jen: We are, honestly, we, we do put in quite a lot of work, but we would not be anywhere near as far as we are if it wasn't for the incredible advocates and constituents all across the US that have reached out to their representatives that have shared on social media,

collaborated with us. You know, social media posts and newsletters and podcasts like this one and organizations like fact. We're just very, very thankful because we recognize that it's not just us,

it's a much broader team of everyone together to get this across the finish line.

Caroline: That is so true. That is so true. It takes everybody. See, it takes a village. It's true. It really does take everybody.

So now, before we say goodbye today, and this has really gone fast,

is there anything else that you would like listeners to hear from you?

Jen: I would say, you know, don't be afraid to be honest and share your story.

And not just the facts and details, but really the heart and passion. And oftentimes that means that if you have kids that are in the food allergy, food allergic disease community,

hearing them and having them share their voice is so impactful to the representatives. When we were with our last effort at D.C. doing our in person advocacy work on Capitol Hill, the biggest impact stories were from those that were directly affected in the youth community and sharing their honest feedback of saying,

hey, I really need to know this information to protect me. You know, my parents do their best, but without the appropriate information, they can't make those choices. So those voices really matter.

Don't be afraid to speak up. Let them participate. And it creates also some really passionate, amazing advocates. These young advocates are so incredible and I've been blown away by this experience of hearing them participate in the ways that they have.

Yeah, that would be my, my biggest piece of advice and for anyone that needs help also, we just put together a website so there's some resources and tools adinaact.com Excellent.

Caroline: Well, thank you so much for sharing your energy, your passion, your time and then your wisdom with us so we can be included in this process that really can make a difference and really improve the quality of all of our lives.

So thank you so much for your time.

Jen: Oh, absolutely. And thank you so much. FAACT has been an incredible partner and we really appreciate the effort to help get the word out and just be be part of the conversation with us.

We're immensely thankful for you guys.

Caroline: Well, we're very honored to be a part of this.

Thank you, thank you,

thank you for listening to FAACT's Roundtable Podcast.

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