Fourteen-year-old Jane Weber shared that she has needed to use epinephrine 11 times to save her life.
Devin Sailer, 18, reminded everyone of the additional impact severe allergies can have on rural populations who lack some of the financial resources of their urban counterparts and often struggle with access to food, medicine, and transportation.
These were but two of many meaningful moments as Allergy Advocates New York joined legislators, families, and community advocates in Albany at our annual Food Allergy Awareness Day on May 18th. The event highlighted the urgent need for policies protecting the more than 2 million New Yorkers managing life-threatening allergies, including over 200,000 children and their families.
Throughout the day, advocates met with legislators and staff to discuss measures focused on accurate food allergen labeling, allergy prevention, and expanded epinephrine preparedness in childcare settings. Participants also shared personal stories illustrating the daily challenges and risks faced by individuals living with severe allergies.
“Legislators need to hear directly from their constituents with life-threatening allergies the challenges they face as they simply move through their day," said Toni Taylor, Co-Founder and Executive Director of Allergy Advocates New York. "The stories the legislators heard from today will help them better understand the risks and issues their constituents face and to support legislation that makes all New Yorkers safer.”
We also hosted a press conference attended by Assembly Member Linda Rosenthal to lend her support. She highlighted multiple legislative victories over the years, including increased access to epinephrine for teachers and first responders and mandates for stocked epinephrine in daycares and large public venues.
Like all of us, however, she realizes the work continues.
"New York State is safer for people with allergies right now but we still have a ways to go," she said. "So we will keep working until we finish what we started. I'm grateful for all of you who care so much and show it through your passion, your schlepping to Albany, and your dedication."
This year much of the discussion centered around the following pieces of legislation:
Menu Labeling (A11072/S10116)
Sponsored by Assembly Member Jen Lunsford and Senator Nathalia Fernandez, this bill would require top nine allergen labeling on food service establishment menu items, providing an additional layer of safety for individuals managing life-threatening food allergies.
Sydney Greenberger, Advocacy and Policy Coordinator for the Asthma and Allergy Foundation of America (AAFA), emphasized the importance of this legislation and the fact that dining out can be high risk to those with life-threatening allergies.
"Providing allergen information on menus is a critical first step to making dining safer," she said.
If passed, New York state would join the European Union and more than 30 countries around the world who have required allergen disclosures at restaurants since 2014, she said. With AAFA's co-sponsorship, last October California became the first state in the U.S. to require allergen menu labelling as well.
Allergy Prevention (A771/S7915)
Sponsored by Assembly Member Rosenthal and Senator Andrew Gounardes, this legislation addresses research showing that peanut and egg allergies can often be prevented through early introduction during infancy. The bill would require insurance coverage for these nutritional supplements, helping improve long-term health outcomes while reducing healthcare costs.
"With this legislation being proposed, we may be able to get in front of this illness in terms of having insurance companies pay for this proven and effective therapy," said Jon Terry, Co-Founder of Allergy Advocates New York. "This also links up with previous legislation we got enacted that puts a cap on the amount that can be charged by insurance companies."
Epinephrine Training & Stocking in Childcare Centers (A9245/S8587)
Sponsored by Assembly Member Rosenthal and Senator Gounardes, this amendment to Elijah’s Law would require commercial and home-based daycare centers to maintain appropriate weight-based epinephrine devices on site and ensure staff are trained to use them. This legislation has now passed both chambers and is headed to the executive branch.
Allergy Advocates New York also staffed an information table where we spent the day interacting with passersby about their own allergies and those in their families, answering questions, and providing information about our organization and why we are so committed and passionate about what we do.
The current legislative session has ended but there is still work to be done to encourage the advancement of these important bills. We will keep you posted on how you can help.
Curious as to what the day was like for some of our advocates? Check out their direct thoughts and photos...
Want to learn more about the legislation? Listen to Toni Taylor and parent advocate Amy Weber on The Capitol Pressroom radio show.
About the Author
Kristen Stewart is the Communications Manager for Allergy Advocates New York, where she writes about allergies, anaphylaxis, advocacy, and practical resources for individuals, families, and communities.