That effort has now reached the highest level: President Barack Obama's desk. The president signed a bipartisan bill on Wednesday that offers a financial incentive to states if schools stockpile epinephrine, considered the first-line treatment for people with severe allergies. The medication is administered by injection, through preloaded EpiPens or similar devices.
"This is something that will save children's lives," Obama said, adding that his daughter Malia has a peanut allergy.
Several states have passed or are considering bills that also aim to stock epinephrine in schools, primarily in nurse's offices. And late last month, the Centers for Disease Control and Prevention issued its first guidelines to schools on how to protect kids with food allergies. The guidelines, which are voluntary, ask schools to take steps to restrict common foods that cause allergic reactions and to make epinephrine available.
"Everything is moving in the direction which adheres to our mission, which is to keep kids safe and included in schools," said John Lehr, the chief executive officer of the Food Allergy Research and Education advocacy organization.
Epinephrine can be used for severe allergic reactions - called anaphylaxis - to food as well as insect bites, latex and medication. Policies vary by school, district and state about the handling of epinephrine and access to high allergy-risk foods. Some schools have lunch tables that are peanut-free, for example.
The epinephrine stockpiling is aimed primarily at children who have previously undiagnosed allergies or as a backup for those with known allergies.
"Most people are very accepting, but you still have those people who are very skeptical who haven't seen an anaphylactic reaction and don't understand," said Sally Porter, a Sammamish, Wash., mother whose 10-year-old son has a severe peanut allergy. She and her husband had to call paramedics to their house when their son was 1 after he broke out in hives and had other symptoms right after consuming peanut butter.
"I think we're coming into a new time when people are going to understand and they're going to get it, and it's sad these children are dying who don't have to be dying," Porter said. "There's a way to save them. Just by having this medicine there is so easy."
A recent CDC survey.found that about 1 in 20 U.S. children had food allergies - a 50 percent increase from the late 1990s.
The deaths of Katelyn Carlson, 13, in a Chicago school in 2010 and Ammaria Johnson, 7, in a Chesterfield County, Va., school in 2012 raised awareness of the dangers of food allergies. But even before then, a grass-roots group of parents had lobbied school districts, state leaders and Congress for help.
House Democratic Whip Steny Hoyer's 11-year-old granddaughter, Alexa, has a severe peanut allergy and twice had to be taken to the emergency room as a young child. The Maryland lawmaker co-sponsored the House bill along with Rep. Phil Roe, R-Tennessee.
"We think it's a very positive step in raising awareness, but I must say I think school systems all over the country are becoming better and better educated on the risks that food allergies pose to their students," Hoyer said.
Children with known food allergies often have doses of epinephrine stored at school specifically for them. The epinephrine stockpile is not meant to replace that.
Stacey Saiontz of Chappaqua, N.Y., has lobbied the New York state Legislature for passage of a bill that requires all teachers to be trained to recognize anaphylaxis and to administer epinephrine. It's for her own 6-year-old son, who has multiple food allergies, as well as his friends, she says.
"Knowing that their life would be saved, I think it's wonderful because a lot of his friends are trying foods for the first time at school," she said.
Already, Pittsburgh-based Mylan Inc., which markets and distributes EpiPens, said it is has distributed free EpiPens to more than 30,000 schools to use in case of an emergency. It has a program called EpiPen4Schools that donates four EpiPens to schools that request them.
One unintended consequence of state laws that have encouraged stocking epinephrine in schools is that some parents of children with severe allergies are no longer sending their kids to schools with the self-injectable epinephrine prescribed to them, said Dr. Todd Mahr, an allergist in La Crosse, Wis., who's chairman of the American Academy of Pediatrics' section on allergy and immunology.
He said it's essential that medical providers and parents be educated about the new laws so they understand that even when epinephrine is stocked in schools, these kids need to be protected throughout the school day on school buses, on field trips and at sporting events.