May is National Allergy Awareness Month, and our team had the privilege of speaking with Seth Togal, father of Adina and the driving force behind the ADINA Act. This crucial bill aims to mandate that all over-the-counter and prescription medications label if they contain any of the top nine allergens or gluten. We are immensely grateful for Seth's dedication to this cause and wholeheartedly support his impactful work. Read his interview below to learn more about the ADINA Act and how you can help.
Can you tell us about the ADINA Act? (What is it calling for?)
The ADINA Act is the Allergen Disclosure In Non-food Articles Act which will require that all over-the-counter and prescription medications in the US are labeled with gluten and/or the top major food allergens, should they contain them. It is an open-ended piece of legislation where, should more food allergens be introduced by the FDA, this would automatically include those. This is also very important for those with Alpha-Gal Syndrome (AGS), as you are well aware, as individuals with AGS may have mild to severe adverse reactions should they take a medication that contains a mammalian product/byproduct.
What inspired the ADINA Act?
The bill was inspired by my 13-year-old daughter (she was 11 at the time) who got sick from taking an antibiotic that had an undisclosed allergen, while at sleep away camp in rural Wisconsin in 2022 after coming down with Strep Throat. Her reaction was identical to the symptoms she has if/when she ingests or comes in contact with gluten or dairy. She became dangerously ill and had to be rushed to the nearest hospital, over an hour away from camp. By the time she came home from the ER, we started calling the antibiotic manufacturer to find out if the medication in fact did contain an undisclosed allergen or gluten. We were stonewalled. The customer service rep stated they can/will only give us the active and inactive ingredients, but not tell us if said ingredients contained any potential allergens or gluten. That’s when we reached out to our US Senators and Representative.
A few weeks later we had a meeting with our Rep’s Health Policy Advisor who heard our story. She immediately took action and worked with their DC office, the Congressman and various nationally known food allergy and celiac non-profits to put together the bill.
Tell us about a formative moment in your life that makes you the person that you are today.
I honestly think it was the moment Adina was diagnosed with Celiac Disease, Eosinophilic Esophagitis (EOE) and her dairy allergy. At the time, it was absolutely terrifying when we received not just one diagnosis, but multiple diagnoses from her GI. Our whole lives changed, and not by choice. Little did we know what journey we would be on only 4 years later.
When we got her diagnoses and had to deep-dive into what it all meant, we really felt like we were alone on an island, and not for a lack of resources available (because there were/are many), but because we knew so few people who had the same issues as us. My sister-in-law and close friend both have celiac disease, but the dairy allergy and EOE added a whole new level.
Our initial struggle with finding safe medications really came during the pandemic when everything in the grocery stores was scarce – especially children’s medicine. A couple months ago, my wife had a Facebook memory pop up from 2021 venting her immense frustration when trying to find out if an allergy medication had gluten and dairy in it, and trying to work with pharmacists to see if a specific prescription medication was safe – neither our pediatrician, allergist, pharmacist or the manufacture would/could confirm the allergen ingredients.
How can people help support the ADINA Act?
The best way to help support the ADINA Act is to call (not write) your US Representative and Senators, tell them your story about why this is so important (how it affects you personally, your children, family member, friends, etc.). Tell them that there’s over 100 million people in the US who would benefit from this becoming law, and that this is a simply short-worded, bipartisan bill that is guaranteed to help at least 10% of their constituents. The Bill #’s are H.R. 4263 (for the House of Representatives) and S. 2079 (for the Senate).
Readers use the following resources for templates on how to write their legislators, talking points (the Adina Act one-pager), articles and new stories, and more to help them make the call. They can also follow us on Instagram and Facebook where we share regular updates on the bill as well as fun or important updates for the food allergy/celiac/AGS communities!
And – if anyone would like our help making a call or having a call/virtual meeting with their legislator or staffer, we are always more than willing to do that!
If you were an allergen-free drug, what would you be?
Oooh, that’s a tough one, mainly because it’s hard to know exactly which meds ARE fully allergen-free! (See what I did there?). But we’re originally from Michigan, and no matter your ailment, the common “medication of choice” there was Vernors ginger ale!
Is there anything else you would like to share with us.
Currently, the ADINA Act has 38 sponsors in the House, and we need a lot more to keep this alive. Even still, we are in the top 18% of all bills introduced to the House with relation to cosponsors in this legislative session (there have been over 11,000 bills introduced in this session!). We have a lot of great support and incredible momentum building, so it’s important that we keep it up and reach as many people as possible!
This past March, we, along with 250 food allergy, celiac and AGS advocates were in Washington D.C. with FARE (Food Allergy Research & Education), holding over 200 meetings with legislators and staffers to lobby for the ADINA Act and other critical pieces of legislation. So far, we’ve added 6 new cosponsors to the bill and expect many more over the next few weeks, but the job isn’t done until the President has signed it into law!
Thank you Seth for sharing your story! Visit here to read the full bill.
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