Food Allergy Awareness Day in Albany, NY: An Agenda to Save Lives

About two dozen advocates from across New York, some of whom have lost a family member to anaphylaxis, convened in Albany to participate in FARE’s Food Allergy Awareness Day on May 16. Partnering with the Allergy Advocacy Association, a Rochester-based, statewide advocacy group, FARE’s Senior National Director of Advocacy Jen Jobrack and Associate Director of Advocacy Jon Hoffman coordinated meetings with 30 members of the Assembly and Senate and, with the help of the advocates, provided materials to every legislative office across the Capitol and staffed a Food Allergy Awareness Week table. Jobrack also spoke at a press conference about food allergy legislation and was interviewed for two television programs hosted by Assembly members.

The delegation traveled to Albany to meet with legislators and voice support for half a dozen bills related to food allergy. This was FARE’s second Food Allergy Awareness Day in Albany and the third year of organizing awareness days at state capitols. Volunteers report that they find camaraderie and empathy at these empowering advocacy events.

This year, the awareness day in Albany was graced by the presence of four families who have lost a loved one to anaphylaxis. They told the stories of their child, sibling, cousin, nephew. Their determination, passion and profound sadness spoke as clearly and powerfully as their words. The food allergy community is indebted to these families for sharing their heartfelt advocacy with lawmakers.

The legislative agenda in New York this year is very full and includes the following bills:

• Elijah’s Law (A10031) would require anaphylaxis policies for child care service facilities. This bill is named in memory of Elijah Silvera, a 3-year-old boy with milk allergy who died last November at a New York City preschool after being given a cheese sandwich. Elijah’s parents, Dina and Thomas Silvera, who traveled to Albany with Elijah’s brother Sebastin and other family members, are working tirelessly for the bill's passage.

• "Gio’s Law” (A8760/S8671) would require emergency service providers to be trained in the administration of emergency anaphylaxis treatment and to carry epinephrine. This bill is named after Giovanni Cipriano, who passed away in 2013 at age 14 due to accidental exposure to peanuts. Gio’s mother, Giorgina Cornago Cipriano, and his cousin, Joseph DiLuca, took part in the Albany awareness day and continue to work toward passage of this legislation. Another bill championed by Gio’s family would require food allergy signage at playgrounds (A8761/S8670).

• Two bills (A329 and A537/S6425) strengthen food allergy preparedness among restaurants. Cathee and Frank Frangella, who lost their daughter Ashley to an allergic reaction to restaurant food that had cross-contact with milk, joined the delegation to support this legislation.

• Other bills discussed include one (A7219/S2489) that permits pharmacists to substitute brand-name epinephrine auto-injectors prescribed to a patient with alternate epinephrine auto-injectors containing the same active ingredients, dosage form and strength, and another (A299/S2747) that would require newly certified teachers to be trained in the use of an epinephrine auto-injector.

The Silveras and Cathee Frangella were also interviewed for Assemblymember-hosted television shows. We thank the three food allergy families and Jon Terry, founder of the Allergy Advocacy Association, whose sister suffered a fatal reaction to bee venom.

The advocates’ efforts inspired several legislators to sign on as co-sponsors of these allergy-related bills. FARE is following up with those who indicated their support as we work to amplify the message that food allergies are a public health and public safety issue. We expect further progress in the coming months and will be engaging our community members across New York to garner support for this agenda to help save lives.