As Kids Age, Food-Allergy Moms Fight New Battles

The mothers of children with food allergies fight for EpiPens and more.

ByABC News
December 31, 2012, 9:25 AM

Dec. 31, 2012— -- In the days before Nona Narvaez needed to testify at the Minnesota State Capitol in favor of legislation that would require all ambulances to carry emergency epinephrine, her son with severe food allergies was only 3, and her fellow advocates were worried about finding babysitters for their own food-allergic toddlers.

But Narvaez knew what she was doing. She told her team to forget the babysitters and bring their children to St. Paul.

"That's what it was all about," she said. "These little kids were running around the Capitol. It was perfect because it put a face to the issue. Frankly, a cute kid is going to be more persuasive than a middle-aged lobbyist."

Not long after they testified, then-Gov. Jesse Ventura signed the bill into law.

That was 2002. Since then, ambulances have administered the injections 1,523 times in Minnesota, and Narvaez has moved on to other food-allergy issues as her now 14-year-old son faces new challenges. Since then, she and her nonprofit, the Anaphylaxis and Food Allergy Association of Minnesota, have worked on the federal food labeling act, St. Paul restaurant safety and even airline safety.

Click here to read about how food allergens aren't always labeled.

The number of U.S. children diagnosed with food allergies rose 18 percent between 1997 and 2007, according to a 2008 Centers for Disease Control report. As the population of children with food allergies gets older, their mothers have been on the front lines, demanding that state legislatures pass laws protecting their fragile children as they approach new hurdles such as college life and plane travel.

In 1998, when food allergies were less common, most states did not allow basic EMTs to carry epinephrine, which can stop someone from having a life-threatening allergic reaction called anaphylactic shock. Today, with cost still an issue for some, only four states prevent their EMT basics from carrying epinephrine auto-injectors, commonly known as EpiPens (about $40 each), and most of those law changes were driven by passionate mothers.

Ann Thompson worked to make Illinois one of the first states to require ambulances to have EpiPens in 2001 and has since moved onto her "next mission," she said. Her son is now 18 and a freshman in college, so she's working on educating college cafeterias on allergen cross contamination and the risk of anaphylaxis.

"We're the grandmas of the group," Thompson said, adding that her son almost died shortly after his birth and went into anaphylactic shock when he was 7. "When a parent experiences things like that, it really gives you a heart and a zeal to make a difference not only in your child's life, but in any child's life. It's a crusade."

Click here to read about Chef Ming Tsai's crusade for food allergy safety in restaurants.

In New Jersey, Rachel Benevento found out just how important EpiPen legislation could be when her 2-year-old bit into his first peanut butter and jelly sandwich and had a severe allergic reaction. He needed one epinephrine injection in the ambulance and another one at a nearby hospital.

Days after her son's reaction, Benevento got a call from a local paramedic explaining that the EpiPen was placed in the ambulance eight days beforehand.

Even though New Jersey passed its EpiPen legislation in 2003, it wasn't implemented until 2007 after allergy mom Allison Inserro started making calls and emails to the health department.