Student advocates are bringing their legislative voices to the table for food allergies and making a difference. Let us introduce you to six inspiring young people in New York, Connecticut and California who became vocal proponents for laws to help those with food allergies. These kids have successfully worked on legislation to require food allergy instruction for teachers; restaurant allergy training and transparency; and access to epinephrine in schools.
In fact, one young advocate was excited to find out that California Governor Gavin Newsom signed the bill he pushed for on October 8, 2023, making it law. Called the Muñoz Student Allergy Framework for Emergencies (SAFE) Act – AB 1651, the act will make epinephrine auto-injectors more accessible in California schools.
“This is an important event for kids with food allergies,” said Zacky Muñoz, 11. “We know our voices can make big changes in the world and I am so proud to be part of making a difference for kids like me.”
New York: Maya Konoff and Jared Saiontz
Senate Bill S290A was signed into law by New York Governor Kathy Hochul in September 2023. The teacher training law requires that all teachers in the state’s public and non-public schools are provided with written information on how to recognize anaphylaxis and use epinephrine auto-injectors.
Maya, 22, and Jared, 15, were young kids when they started pushing their state to provide teachers with better training and information on how to use epinephrine auto-injectors. A version of the bill was introduced 12 years ago.
“We worked really hard on this bill for many years. To know that this teacher training will finally be a reality is so rewarding,” says Maya.
Maya was just 10 when she began advocating for the teacher training law, and speaking to politicians felt intimidating. But Maya, who has allergies to eggs, peanuts, tree nuts and sesame, learned that even her young voice could make a difference.
Jared was only 4 years old when he started lobbying in Albany, New York’s capital. He felt nervous speaking to lawmakers, but realized he could educate them to understand what it is like to live with food allergies. And they took the time to listen.
“Each year, I became more confident. These individuals had the power to make a change for the better for those with food allergies,” says Jared, of Chappaqua, New York. When he heard the bill passed, “it almost felt surreal because I had been advocating for so long,” says Jared, who has 26 food allergies.
The young advocates learned that persistence pays off, and Maya became well-versed in the give and take of negotiations.
“The version of this bill that Governor Hochul signed into law is very different from the bill proposed 12 years ago. But it is still a vital piece of legislation,” says Maya, of Port Washington, New York.
Impact on Food-Allergic Students
Maya’s mom Jill Mindlin recalls feeling fear as her daughter entered kindergarten, since her child had already experienced multiple anaphylactic reactions.
“There was simply no way I could let her go to school without first going in and training her teacher on how to prevent, recognize and respond to an anaphylactic reaction,” she says. She repeated the practice every year until Maya graduated from high school. But not all parents can take the time to do that.
She and Jared’s mom Stacey Saointz are both attorneys, and brought considerable skills to the table for negotiating and bill writing. According to the nonprofit FARE, which supported the school advocacy, more than 212,000 state teachers will have the anaphylaxis training.
Children who have not yet been diagnosed with food allergies also can experience their first allergic reaction in school. “To know that teachers in New York State will now be prepared if such an emergency occurs is a tremendous comfort,” Mindlin says.
Jared and Maya agree. They both hope that the law will help teachers to feel more prepared, along with easing concerns of both teachers and students.
“This law will allow all students like me to thrive in school without fear, knowing that the teachers around them have the tools and training to protect us,” Jared says.
Connecticut: Maia Coplit, Lilia Vine and Robert Vine
Bill No. 5902: An Act Requiring Food Allergy Awareness In Restaurants was signed into law by Connecticut Governor Ned Lamont in June 2023. The law requires each restaurant to employ a designated certified food protection manager who has completed an allergen awareness training program. It also requires set procedures for informing diners of food allergies in menu items. Plus, restaurants will need to clearly display a request on menus and boards that customers notify servers of food allergies. A poster about food allergies and procedures for serving food-allergic customers must also be on display for kitchen staff.
“It really means the world to me that restaurants in Connecticut will be more aware of and accommodating of allergies,” says Robert Vine, 17, of Greenwich, Connecticut.
Because of the law, the high school junior feels safer going out with friends to eat after rowing practice or to celebrate a birthday. “It will take away a lot of pressure for me. I hope it will do the same for people like me in my state,” says Robert, who is allergic to pistachios, cashews, shellfish, and undercooked egg.
Robert, his sister Lilia, and their friend Maia Coplit advocated for better training and transparency in Connecticut restaurants after comparing dining experiences during two trips.
Maia, 15, had an allergic reaction requiring epinephrine after accidentally eating cashews at a restaurant during a visit to Pennsylvania. “The whole experience shook me a little,” says Maia, who is allergic to most tree nuts and sesame.
The high school sophomore says that “eating in restaurants is always a little scary.” She speaks of having to put her faith in restaurant workers, while unsure of their food allergy knowledge.
Meanwhile on a trip to Ireland, the Vine siblings found that menus were labeled for 14 allergens specified under European Union law, and Robert’s meals were cooked separately. Even at a small restaurant surrounded by sheep pastures, the siblings were impressed by the food allergy knowledge and labeling transparency.
“The system “was really efficient and patron-friendly, and super calming mentally,” Robert says.
Robert and Lilia shared their excitement about the possibilities for restaurants in their own state with Maia. The Food and Drug Administration addresses food allergy management in restaurants in its updated Food Code, but states are not required to adopt the latest update. So it is up to each state to create specific requirements and guidelines regarding food allergies in restaurants.
“We realized that we could solve so many problems just by passing a simple law telling restaurants to label their allergens,” says Lilia, 15.
The teen trio was excited when the Connecticut Senate passed the bill as they watched the legislative process play out on a live feed.
“It was extremely nerve-racking,” Maia says. Lilia remembers how they texted each other in all caps on a group chat, and sent screenshots from the feed. Feelings of pride and celebration took over once the bill passed, Robert says.
The teens saw their efforts succeed from bill to law in a relatively short time. In 2022, they started working with Representative Robin Comey, who previously advocated for legislation that allows public venues to keep epinephrine auto-injectors. It turned out Comey had already begun work on a food allergy restaurant bill. Within a year of the teens joining that effort, the restaurant bill became law.
“Knowing that restaurants in Connecticut now have more precautions regarding food allergies makes me feel a lot safer,” says Maia of Old Greenwich, Connecticut.
In addition to easing worry for her brother, Lilia says working with state lawmakers restored her faith in government. She was impressed by the willingness and effort of the group of people who worked to make change. “It was evident they cared about their constituents and the struggles they face each day,” Lilia says.
The teens experience meant a day of high school, activities and homework was sometimes followed by an evening testifying before state lawmakers.
“This legislation truly has the potential to save lives, or at the very least, quite a few trips to the ER. So the physical and mental ramifications of the bill are really exciting,” Robert says.
The Connecticut teens also are stretching their entrepreneurial muscles. They’ve developed a phone case called SercaCase that holds an Auvi-Q epinephrine auto-injector. (They now have it available for ordering here.)
“We, especially as young adults, simply do not leave our phones anywhere. Our hope for SercaCase is that people with allergies will have a lifesaving device always at hand for when they really need it,” Lilia says.
California: Zacky Muñoz
Muñoz Student Allergy Framework for Emergencies (SAFE) Act – AB 1651 was signed into law in October 2023 by Governor Newsom. The law ensures epinephrine auto-injectors are accessible (not locked up) and the location would be known to school staff at California schools. It also requires written instructions on the use of the auto-injectors.
“This legislative effort ensures that there is clear communication where the epinephrine is, and it is never locked up,” says Zacky of Pasadena.
He notes the importance of receiving epinephrine quickly during an anaphylactic reaction. It scares him to think that tragedies have occurred when medication is administered too late.
California’s stock epinephrine law, which was signed in 2016, requires school districts to provide auto-injectors to school nurses or trained staff. But the law doesn’t specify how the medication is stored or accessed.
The Muñoz SAFE Act aims to make it so school staff know where to find, and can access epinephrine auto-injectors, even if there is not a nurse on site.
“I want to make sure we always have our lifesaving drug close and available,” says Zacky, who has multiple food allergies and has experienced anaphylaxis at school.
Zacky previously had success advocating for AB 2640. Now known as Zacky’s Law, it was signed into law in September 2022. The law required the creation of the California Food Allergy Resource Guide, which was made available to all state school districts in August 2023.
The guide provides information on food allergy management and treatment, including state and federal guidelines, and resources on how to navigate food allergies and minimize the risk of anaphylaxis in school.
Zacky was honored in August 2023 during a ceremony in Los Angeles announcing the new guide. “It meant so much,” he says. “I couldn’t sleep the night before because I was so excited.”
The sixth-grader, who has worked on both bills with his mom, Priscilla Hernandez, has learned that the legislative process can be detailed and complicated.
“I hope both the Zacky Law and Muñoz Safe Act helps us to be safer in school and provides us what we need. More importantly, I hope it sends a powerful message that we need more laws in place to help protect us with food allergies,” he says.
Zacky knows that having food allergies means that he can’t always control what he can eat, but when he’s advocating he is in control of making his voice heard.
“These bills are a win for us kids with food allergies for so many reasons. They keep us safe but more importantly I feel like it acknowledges us and our needs,” Zacky says.
Photo credit: Zacky Bill Ceremony, courtesy Office of LA County Supervisor Kathryn Barger.
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