Medication Allergen Labeling and the ADINA Act
Have you ever thought you planned for every worst-case scenario as a parent, only to find there was one critical item you left out? In the summer of 2022, our then-11-year-old daughter Adina came down with strep throat while at sleepaway camp, almost three hours from our home near Minneapolis, Minn. Fortunately, the camp staff were well-informed of her celiac disease, eosinophilic esophagitis (EoE), and various food allergies, and knew not to administer any medications without parental approval. However, we still found ourselves in a situation neither we nor the camp medical staff had prepared for.
We’ve always diligently prepared for Adina’s time away at camp—sending pre-packaged and pre-cooked food, working with the kitchen staff to ensure safe meals, and providing safe, over-the-counter medications in case they’re needed. The one thing we didn’t account for was the need for antibiotics or other prescription medications.
As it turns out, Adina needed an antibiotic for strep throat—one medication we hadn’t provided. We tried to consult local pharmacies about the medication the camp had on hand, but they were reluctant to give any concrete information about the ingredients citing liability concerns, since they weren’t the ones dispensing the medication. After finding inconsistent information about the ingredients online, we decided to treat the strep throat with the medication the camp had, while the camp nurse closely monitored her.
Unfortunately, Adina started displaying symptoms of a possible “glutening” soon after taking the antibiotics, and eventually fell ill. Her symptoms closely mirrored those of when she ingests gluten and/or dairy. She experienced severe digestive distress, which caused major dehydration, and wasn’t able to keep food or water down. When she began floating in and out of consciousness, we received an urgent call saying Adina was no longer stable enough to stay at camp. Our options were to have her transported by ambulance or camp staff to the closest medical facility.
Seeing our daughter in such distress sent us on a mission to discover what exactly was in that medication. After hours spent on the phone with the manufacturer’s customer service department (and hitting multiple dead ends), we wrote our U.S. Senators and our Congressman, Representative Dean Phillips. Within 45 days of Adina’s visit to the ER, we met with Rep. Phillips’ Senior Constituent Advocate, who listened to our story and understood our frustration:
If the FDA requires food companies to label their products for the top nine allergens plus gluten, why aren’t drug companies required to do the same?
After all, most medications are administered orally, just like food. This issue affects millions:
An estimated 1% of the American population has celiac disease and more than 33 million Americans live with potentially life-threatening food allergies.
Approximately 93% of medications (both over-the-counter and prescription) contain potential allergens. This puts about 10% of the U.S. population at risk of having a reaction, some fatal.
The ADINA Act
Not long after, Rep. Phillips came to our home to film a short video that he would use when introducing the bill to Congress and unveiling the name of it: The Allergen Disclosure In Non-food Articles Act or, the A.D.I.N.A. Act (how cool, right?!?!?).
Representatives Mikie Sherrill (NJ), Mike Lawler (NY), Mike Gallagher (WI), and Senator Richard Blumenthal (CT) signed on as the bill’s first co-sponsors. On June 22nd, 2023, the ADINA Act was officially introduced to the House of Representatives (H.R. 4263) and Senate (S.2079) with the support of 14 national celiac disease and food allergy advocacy groups, including Beyond Celiac, FARE, and the American Academy of Allergy, Asthma & Immunology.
Our grassroots initiative has rallied support in so many ways, from content creators to news outlets across the country. Additionally, Adina, her mom, and her dad (that’s me!) will be speaking at FARE’s Courage at Congress event this March to raise awareness and support to help get this bill passed.
What’s next?
It’s been an incredible seven months since the bill was first introduced, but the hard part is ahead of us. For the ADINA Act to become law, we need to continue raising awareness with the House Energy and Commerce Committee (where the bill was referred) and pass hearings and votes, then do the same in the Senate before (hopefully!) the President can sign it into law. Remember: there will be opposition from the pharmaceutical industry and other politicians.
There’s still a long road ahead, and if it’s not signed into law by the time the new Congress is sworn in (January 3rd, 2025), then we start all over again.
How can our community help?
The best way to help is by calling and writing your U.S. elected officials and urging them to support H.R. 4263 and S. 2079. You can find out who your U.S. Representative is here and who your U.S. Senators are here.
If you’d like to follow our progress, you can find updates on our Facebook group (The ADINA Act-Citizens for Allergen-Safe Med Labeling) and Instagram account (@the_adina_act_effort).
— Seth Togal
Seth Togal, his wife Jennifer, daughter Adina, and French bulldog Coco reside near Minneapolis, Minn. Adina was diagnosed with celiac disease, EoE, and lactose intolerance at age eight, and fructose malabsorption at age 10. Jennifer is a professional photographer, and Seth works in banking/wealth management. Adina enjoys spending time with her friends, as well as playing games, lacrosse, golf, and art.