Allergy Force Insights
Food Allergy Advocacy: Perseverance Delivers a Win
This 'Changemaker' article features the advocacy journey of two persevering food allergy parents. Our hope is that it will inspire you to find your voice and take action in your own communities to address policy and legislative gaps that leave your children vulnerable to food allergy mishaps.
When we use our voices together, we can make change happen. We can make life safer and easier for our food allergy community.
Allergy Force caught up with Patricia (Tricia) Donovan and Jessica Curran, a dynamic duo who’ve advocated together for 8+ years to improve food allergy laws in Connecticut and policies at the local level. They now also advocate for families seeking 504 Plans from their schools for food allergies.
Jessica and Tricia, who know how to research and build a case, work tirelessly on behalf of our Connecticut food allergy community, making our state safer for children with food allergies.
With meticulous research and preparation — without funding, without resources — they delivered an important legislative win in Connecticut that you should know about, that could inspire you to do the same in your own community and state.
“It wasn’t a plan. It was a paragraph!”
When Jessica Curran from Fairfield CT registered her twin boys for kindergarten, only one of her sons had food allergies. The school’s principal proudly told her, “You’ll be in the best school in the district for food allergies.” She wondered, “Why would different schools in the same district handle food allergies differently?”
The question stayed with her….
Both Jessica and Tricia have multiple children with multiple, anaphylactic food allergies. Though they raised their families in the same community, their kids didn’t cross paths at school or through sports. At the time they connected, there was no detailed food allergy policy in the Fairfield County school district. Jessica recalls with a head shake, “It wasn’t a plan. It was a paragraph!”
Only serendipity and the fact that food allergy policy wasn’t working in their different schools brought them together at a Board of Education (BOE) Policy meeting on students with special healthcare needs in the 2014-2015 academic year, despite Connecticut state statutes that had been passed in 2006 (and updated in 2012) that required districts to establish food allergy management plans for their districts.
Often, schools’ interpretations of FERPA (Family Educational Rights and Privacy) and its privacy requirements make it difficult for food allergy parents to even find each other, let alone connect in a meaningful way.
“I would have never found Jessica if it hadn’t been for that meeting,” recalls Tricia, sharing that “it felt better to be in a like-minded group — with all the concerned food allergy parents who attended that meeting — even though we came from different schools, with kids in different grades, with different allergies.”
“...we found ourselves fighting food allergy myths and biases from the outside looking in...”
Think about the power dynamic of a young child in a classroom. A little child can’t control their environment. “How can a child police his peers and contradict an adult in authority?” Jessica asks. “Policy, standardized practices, and school authority need to take the lead there.”
In 2014-2015, Tricia and Jessica asked their school district’s BoE to create a comprehensive food allergy policy. They did not ask for anything that wasn’t supported and promoted by state and federal law, or medical standards. They attended every BoE Policy meeting for a year, eventually making the BoE understand the need for a detailed food allergy policy for the entire district that would be uniformly applied across all schools in the district.
They quickly realized that it was unrealistic to ask 'lay' people on the BOE to craft a policy that relied on current medical and legal practices.
“Most BOE members had to be educated from the ground up and we found ourselves fighting food allergy myths and biases from the outside looking in,” Tricia and Jessica recall, remembering the frustration of the process. In between meetings, they would research policies from other states and cities, and best practices from allergy organizations — "peeling back the onion" — then provide their findings as resources for the policy writers.
However, informing and educating BOE members wasn’t enough.
“...just teach them not to eat it.”
—General Public at BoE meetings
The BoE Policy meetings were open to the public and the BoE welcomed the largely uninformed public’s opinions on a medical condition, related accommodations, and practices and procedures to operationalize it. No surprise that Tricia and Jessica would go on record at meetings to correct many things.
When the minutes from the meetings were posted, Tricia and Jessica were identified by name, while other vocal parents were not. At times they felt targeted for speaking up. It was uncomfortable. They thought, “If this is what it’s like in our community — an educated, well-resourced town with access to good medical care and early childhood education — what must it be like in other communities without these advantages?”
The BOE policy readings at public board meetings were equally painful, where Jessica and Tricia often had to speak in support of the policy and provide the necessary public education on medical needs and standards of care to garner support.
At one particular meeting, a BOE member pulled out the new [at the time] LEAP study on feeding young children small amounts of peanuts in order to prevent them developing peanut allergies. He essentially wanted to use this study to say, "See, your kids should be exposed to small amounts of allergens, not protected from them in a classroom!"
Tricia and Jessica found themselves having to explain this study or the general public would have accepted the BOE member's uninformed interpretation as 'fact'.
The food allergy policy for their school district was eventually approved and implemented in 2015. Thanks to their perseverance all the elementary schools in their Fairfield County school district now follow the same food allergy policy.
However, the BoE Policy Committee was unable to address the slightly different needs of middle and high schoolers at the time.
“In middle school, children’s needs change with a natural shift towards more independence, less oversight and an increase in behavioral risks.”
Middle and high school students are active in after school clubs and sports, riding team buses, going on overnight trips and attending dances. Children want to fit in, to be just like everyone else. This new dynamic presents different risks. Some of the behaviors Tricia and Jessica observed were within their children’s control — like social choices — but others were not.
Jessica remembers, “Definitely by the end of middle school our children knew what they could eat versus not. They knew the signs and symptoms of anaphylaxis and how to administer their epinephrine. But they couldn’t control their school environment.”
One parent suggested in a policy meeting, “…if they feel unsafe they can just walk home…” But the practical reality of your child leaving a supervised environment and being alone creates safety issues. It’s not a solution.
Tricia explains, “As part of peeling back the onion, it became clear to us that leaving decisions on food allergy policy to local 'lay' BOE members was problematic. Not everyone had current medical information and even fewer understood it through the legal lens of Federal disability law.” (Section 504 of the Rehabilitation Act of 1973 and the updated ADA, 2008 Amendments Act).
Jessica and Tricia felt strongly there was a need for state-wide legislation to protect kids with food allergies, both on the school bus, within the schools and during school-based activities. With strict avoidance being the medical protocol, the need for caution doesn’t end when children with food allergies get on the bus or walk in the door at school, or participate in a school-based activity.
From their policy work Jessica and Tricia had learned that local policy changes were hard to drive because of knowledge gaps. They believed that if they advocated at the state-wide level, the local knowledge gaps could be solved from the top down.
The advocacy partners had found their voice, they would be heard…
“It was a kind of ‘David vs. Goliath’ undertaking...”
Tricia and Jessica next pushed to have the State of Connecticut look at food allergy management in public schools across the State. “While kids may have different food allergies, what we do to manage them is the same: wash hands, epi first, epi fast, seek medical attention, avoid allergens. This could be standardized,” Tricia explains.
When they dug into the State of Connecticut’s agency organization, the State’s Education and Public Health websites lacked current information. The Education and Public Health agencies were siloed. On Public Health’s list of conditions covered, food allergies and food allergy-related asthma were MIA for all practical purposes. Education muddled Food Allergy management with Glycogen Storage Disease management which should be included in the Diabetes Management plans.
Tricia paints the picture, “It was like peeling back an ever larger onion to get any clarity on the State’s food allergy position.”
The pair met with their local State Representatives for guidance and help introducing a bill in the Education Committee to create a task force to study the food allergy situation in public schools. They got a public hearing. They asked for the matter to be addressed from both Education and Public Health perspectives.
“One of the best moments was testifying together…It was our chance to educate people.”
Their testimony before the Education Committee persuaded the State to set up a task force evaluate the food allergy environment in the State’s public schools.
Public Health, Education, and the Board of Education Association had seats on the task force, but their representatives brought limited knowledge to the table. Jessica was also formally appointed to the task force. Tricia was the team’s ‘forensic expert’, attending meetings, tracking the discussion, researching behind the scenes and providing testimony. If a standard or a law was out there, Tricia would find it. Her research kept the task force on track with evidence-based resources at their fingertips.
The partners worked to ensure that the discussion framework stemmed from federal and state law, and medical protocols. They made sure federal disability law (ADA) was considered and invited lawyer Laurel Francoeur — a nationally recognized food allergy advocate, author, and national speaker — to address the task force.
Forward momentum was glacial.
In January 2017, the task force delivered a detailed report that covered:
Policy Management (policy, protocols and communications)
Transportation (administration of epinephrine on buses), and
The Psychosocial Impact (school climate, wellness, bullying policy).
"We felt we needed to go big or go home...this was a marathon, not a sprint."
In early 2017, the task force sent a food allergy bill forward to the State legislature. The bill, based on task force recommendations, included:
Updating the State Guidelines for medical best practice & legal standards;
Allowing for self-carry of epinephrine without having to self-administer;
Mandating that all bus drivers be trained by bus companies in the signs and symptoms of anaphylaxis and epinephrine administration using vetted online or live sources; and
Updating culinary and health living curricula to include food allergy, allergens, and cross contamination.
Legislators approached them about removing things from the proposed bill for fear it wouldn’t go through, but Jessica and Tricia held fast. The bill faced heavy opposition from Education (too busy, too few resources) and the transportation [bus] lobby (too much liability).
Jessica recalls, “We did not back down on the proposed language, even when we were warned we were up against a powerful lobby.”
In March 2017, the body of evidence the task force assembled and the recommendations were taken to the Education Committee. The partners testified with multiple food allergy families before the Committee. The bill met with fierce resistance from the bus lobby who did not want drivers to administer epinephrine for anaphylactic emergencies on buses — liability concerns were at the forefront of this resistance.
The bill was passed by the House but failed to be picked up by the Senate.
“Ever tried. Ever failed. No matter. Try Again. Fail again. Fail better.”
Jessica and Tricia saw firsthand that legislative initiatives can easily be derailed by well-funded, well connected lobbyists who have more access to legislators than constituents do. They learned that how things are positioned is critical, the administration of epinephrine by bus drivers being just one example.
Reflects Tricia, “Though we positioned it as a life saving step, the bus lobby called it "medical intervention." They also realized too late that they needed support for the bill from influential Senators.
Their first round failure to reach the finish line showed them that they needed more partners and louder voices to counter the bus lobby. They got the nurses' association and FARE on board, and spoke with the lawyers' lobby on liability. They also recruited advocates from key constituent areas and told the story (with permission from the family) of the untimely death of Amanda Huynh from anaphylaxis on a bus in 2018. Amanda was a middle school student when she passed away.
They took another run in 2018, re-introducing House Bill — An Act Concerning the Recommendations of the Task Force on Food Allergies. For this second round, they had the full support of the nurse’s association as long as the transportation company trained the drivers. They also included "Good Samaritan" language to allay bus lobby liability concerns. They had new ‘advocates’ and new information. FARE rallied advocacy support from food allergy families who reached out and met with legislators and testified. They presented new information, demonstrating to legislators and lobbyists how easy it is to use different kinds of epinephrine auto injectors.
This time the bill passed in modified form.
On July 1, 2018, a new law went into effect in Connecticut requiring school transportation companies to teach school bus drivers how to handle serious allergic reactions. The drivers would be trained to identify the signs and symptoms of an allergic reaction and to administer epinephrine via auto-injector. The new law extended the protections of the “Good Samaritan” law to cover school bus drivers.
“Fall down seven times, stand up eight.”
Jessica recalls, “Many people stepped away after what we experienced at the local level. But we persevered. But, there is still so much left to do.”
Their advocacy journey has not been without its ups and downs. Jessica and Tricia share some ‘road tested’ advice for aspiring (and accidental) advocates — food allergy parents, caregivers, entrepreneurs, friends:
1. Find a partner (in a perfect world, a ‘yin to your yang’ sort of partner).
Working as a team gives you much more strength. Tricia suggests that, “life can often get in the way of best efforts and you may need to step back to take care of things. Working in a team allows the work to keep moving forward while you tend to those you love.”
2. Do your homework.
Knowledge transfer is the key. Find the laws, the medical standards, the trials to support your asks. Jessica advises that, “your aim should be to go in better educated than everyone else and then help educate them.” You educate as you advocate. You advocate as you educate.
3. Stay patient. Stay resolved.
Driving change in food allergy legislation is definitely a Sisyphean task. Accept that you will sometimes lose more ground than you gain. Dig in. Find your grit. Be clear on your ‘must haves.’ Understand why you lost an argument and go back stronger next time. Never go into a negotiation without having things to give away. Jessica advises, “even though we believed in ‘go big’ or ‘go home’, we strategically placed things in the bill we could bargain away to keep the non-negotiables intact and in place.
4. Get reinforcements.
There is strength in numbers. Recruit like-minded parents with different backgrounds to join the fray. Recruiting industry subject matter experts can strengthen your case at critical junctures. Sometimes you just need reinforcements to power through cobwebs and roadblocks.
5. Present diverse perspectives.
Presenting a diversity of perspective is helpful. Legislators are used to seeing moms/women talk about children's health needs. Having dads/men weigh-in is a powerful way to capture legislators’ attention. Legislators also really listen to children who are impacted by legislation under consideration. Having different ethnic groups weigh in, as well, shows the breadth of this chronic health issue’s impact on families, on constituents.
6. Stay hopeful.
Sometimes, the world is not so accepting of change — like you need a pandemic to send a wake-up call. Their hope is that people will realize (certainly after Covid-19) that we all share responsibility for the wellbeing of others. Their hope is that people will have a greater understanding that things you can’t even see can harm someone — like something being aerosolized, whether it’s virus-filled water droplets or dust from dry roasted peanuts.
“Change will not come if we wait for some other person or some other time. We are the ones we've been waiting for. We are the change that we seek.”
Tricia and Jessica, we know you don’t seek center stage or accolades. We see that you serve others with kindness, compassion, generosity, and a fierce dedication to fight the good fight for food allergy inclusion and safety.
A heartfelt thank you to you both for finding your voices, for using them to make life safer and easier for families with food allergies in Connecticut.
Both Tricia and Jessica work as advocates, helping families and schools safeguard children in a positive, inclusive and developmentally appropriate way. They also teach their families and children to become advocates so they, too, can help pave a better path for those behind them. They continue their legislative advocacy in advancing food allergy positive bills like entity stock epi, restaurant training, early childhood, and more. They will continue pushing the State of Connecticut to recognize food allergy as the epidemic it is. You can connect with them by messaging Patricia Donovan via LinkedIn messaging or by email to firstname.lastname@example.org.
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Images: Courtesy of Patricia Donovan, Jessica Curran, Stephen Harlan on Unsplash and Wix