Last summer, 11-year-old Adina Togal was enjoying a carefree summer at Herzl Camp when – as it happens with so many kids – she came down with strep throat. For most, antibiotics and rest are enough to get them back on their feet.
Adina is not like most kids. Having celiac disease, a dairy allergy, and an autoimmune-triggered response in her esophagus, even a life-saving medicine can be dangerous.
“Camp called us, told us what medicine they have and who manufactures it,” said Seth Togal, Adina’s father. “While at the Edina Water Park, we started calling around to see if any pharmacies are familiar with the ingredients, and do they have gluten or dairy. It’s not federally mandated to list that like it is with food.”
Two days later, after taking the medication, Adina was back in the health center at Herzl with vomiting, gastrointestinal distress and lethargy.
“The reaction is very common to gluten cross-contamination,” Seth said.
But the concerns got worse: at 2 a.m. Seth and Jennifer Togal got the call that Adina’s blood pressure dropped, she had been in and out of consciousness and needed to go to the emergency room. Jennifer met Adina at an Eau Claire, Wis., hospital where she recovered, went home for a couple of days, and then went back to camp.
But the underlying concerns that the Togals had still hadn’t been addressed. With no mandate on pharmaceutical companies – and those same companies not being forthcoming with information – there was no way to find out if there are cross-contamination issues. Even the intensive research the Togals do on a regular basis for things Adina eats and drinks – as they learned last year – isn’t always enough.
Seth Togal started reaching out to his elected officials – Rep. Dean Phillips and Sens. Tina Smith and Amy Klobuchar – to try and create a legislative solution.
“Twice a day for a week I was reaching out to them,” Seth said. “I’m emailing. I start calling. I call [Rep. Phillips’] office and talk to an intern who also went to Herzl. They found the email and printed it off.”
At a meeting in Phillips’ local office in Minnetonka, the Togals met with a staffer who had done some research: Only one other time did legislation get attempted for this issue, by former Rep. Tim Ryan (D-Ohio). It got around 15 co-signers and only covered gluten in ingredients.
“It’s too narrow,” Jennifer said. “This issue goes way beyond celiac disease. There are so many other allergens.”
Phillips met with the Togals, which led to the third-term congressman authoring the Allergen Disclosure In Non-food Articles Act or the “ADINA Act,” which requires the labeling of the top 9 nine allergens and gluten in both prescription and over-the-counter medications – wheat, dairy, egg, shellfish, peanuts, treenuts, sesame, soy, fish.
“It’s a beautiful and very prototypical example of our whole mechanism, which is in Minnesota, we listen. And in Washington, we implement or we act,” Phillips said. “[It’s about] not only what’s possible and how you do it, but the fact that it’s so wonderfully bipartisan is just a testament to having the ability to listen, and then have the right people in place to do something about it.”
The bill was introduced on June 21 in the House Energy and Commerce Committee and has 10 co-sponsors – five Democrats and five Republicans – representing states from coast to coast. There is a companion bill in the Senate, led by Sen. Richard Blumenthal (D-CT).
Currently, the legislation is part of the Food Drug and Cosmetic Act, because that’s what regulates pharmaceutical packaging. Phillips is hopeful that it becomes part of the 2023 Farm Bill, the once-every-five-years package of bills that sets national agriculture, nutrition, conservation, and forestry policy. The 2018 bill expires next month.
“That train we know is going to leave the station. Because it’s a big train, it’s got a lot of cars on it,” Phillips said. “Otherwise it has to be a standalone [bill], which is not impossible, but really hard in this day and age to pass standalone bills through Congress. The good news is it’s such a reasonable, nonpartisan, thoughtful bill.”
No matter how reasonable the bill seems, time is of the essence. Even though there are 17 months until the next congress is sworn in on Jan. 3, 2025 and if the bill isn’t passed before then it would have to start over and be reintroduced, Phillips said that most things happen in the first year of a two-year session.
“Once you’re in an election year, things just do not seem to move,” he said. “Nobody wants to give the other side a win. And there are fewer opportunities to move the big bills through.”
And then there’s the challenge of battling the pharmaceutical industry, which Phillips said is amongst the most significantly resourced, well-organized, aggressive, and connected of any of the lobbying groups in Washington, D.C.
“If they don’t want something to happen, they’ve got a lot of levers to pull,” he said. “I’m not sure how they feel about this right now. They’re clearly not big fans. They weren’t very thoughtful to Seth and Jennifer when they reached out.”
The effort is getting national attention. FARE – Food Allergy Research & Education – which is the country’s leading nonprofit organization for food allergen advocacy, is “strongly endorsing” the ADINA Act.
“It addresses a significant gap in current laws regarding allergen labeling,” FARE CEO Sung Poblete said in a statement. “For individuals with food allergies, medication safety is of utmost importance, and the accurate identification of allergens in pharmaceutical products can be a matter of life or death. We believe that individuals have the right to make informed decisions about the medications they consume, and the ADINA Act will provide them with the essential information needed to manage their health safely and effectively.”
Jennifer said that word is spreading, with other advocacy groups supporting the legislation.
“That it has made it this far in this amount of time is amazing,” she said. “But we shouldn’t have to put ourselves or our children at risk. We’ve spent years calling every manufacturer and it takes so much mental bandwidth to do this over and over knowing full well we won’t get a response that’s helpful. It can make one other family’s life easier and less stressful, that’s where the motivation comes in.”
Coping with the attention
Adina, now 12, said that all of this is “a lot,” but she seems to understand the magnitude of it all.
“Just to know that if this gets passed I, we, will have changed millions of lives because of medication not saying that it’s safe in plain words,” she said. “It’s also exciting to think if I didn’t get sick, this wouldn’t have happened. These big things only happen from tragic things. It takes hard work and a lot of pain to make things happen. And it shouldn’t be this way.”
As she’s gotten older, Adina has learned what she can and can’t eat, but it’s not always easy.
“Sometimes I feel bad saying no to friend’s parents who offer food,” she said. “But my best friend’s parents have bought the food I eat at my house so I can have meals there.”
School can also be a challenge. Jennifer said she works with Adina’s school, Heilicher Minneapolis Jewish Day School, on essentially a 504 Plan, but for food.
“Adina has assigned sets for meals, we supply all the meds she can take,” she said. “And hands have to be washed with gluten-free soap.”
For Adina, it can be hard to be cautious all the time.
“I don’t pay attention to my surroundings all the time. I just want to sit with friends but I always have to sit at the end” of the table, she said. “Sometimes I have to be left out.”