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Another Great FARE Courage at Congress - 2024

Courage at Congress, hosted by FARE, updated advocates on the latest in federally funded research and the personal stories from around the country that inspired calls for legislation in Congress.
Courage at Congress and FARE logo against image of United States Capital

Early in March, FARE hosted their annual Courage at Congress in Washington DC. Over 200 Advocates from around the country gathered to learn about federally funded research updates and to prepare the group to meet with their Congressional Representatives and Senators to request their sponsorship of a broad range of legislation that will directly benefit those living with life threatening allergies.

The research updates by Dr. Alkis Togias, of the National Institute of Allergy and Infectious Disease (NIAID) and the Consortium of Food Allergy Research (CoFAR) highlighted progress made in studies across the country funded by CoFAR. He stressed the importance of continued Congressional support to keep the funding going. Don Prater, of the FDA and other directors working in food safety and labelling, spoke of the awkward rollout of the FASTER Act. The compromised implementation was, that rather than adjust manufacturing processes to accommodate the addition of sesame to the top allergens list, commercial bakers put sesame flour in everything, labelled it as such, and said they were in compliance. This resulted in removing even more packaged baked goods from the shopping lists of consumers managing food allergies. The FDA team encourages anyone who has been impacted by inaccurate food labels or reduced selection of packaged baked goods to tell them about it. Help them hold food manufacturers accountable on our behalf.

On the legislative front, the team at FARE has been incredibly productive in building sponsorship for a series of House and Senate bills that, with the advocacy work of everyone in the room, will have an immediate impact on those managing life threatening allergies.

The Togal family shared the story of Adina Togal, who almost died after taking an antibiotic with unlisted allergens. Adina’s story was the impetus for legislators to sponsor a bill requiring top 9 food allergen labelling on all OTC and prescription drugs. The Adina’s Act, H.R. 4263/S. 2079

Angel & George Mueller lost their son Dillon to a bee-sting reaction. Dillon’s loss prompted the Muellers to begin training everyone in their state of Wisconsin on how to use and stock epinephrine and to get Dillon’s Law passed in Wisconsin. “Doing it for Dillon” resulted in a national level Dillon’s Law, H.R. 3910/S. 3575.

Momentum for putting a price cap on epinephrine continues to build at the federal and state levels. With more and more Americans having high-deductible insurance plans, in addition to the multiple doses of epinephrine many people need to have (i.e. the 2 they carry, the 2 they keep at school, the 2 they keep at grandmas), the cost of epinephrine is quickly approaching the cost of rent, mortgage, and student loan payments. For a life-saving medication and delivery method that only costs $8 to produce, this is putting people at risk. The EPIPEN Act would cap the cost at $60 per 2-pack. Epinephrine’s Pharma Inflated Price Ends Now Act at H.R. 6965.

And then there’s the New York Delegation - 18 strong. Long time advocates worked with new advocates to ensure New York’s representatives were educated about the legislation important to the safety of the community and asked for their sponsorship. The work of the New York group results in life saving impact.

Which leads us to Food Allergy Awareness Day in Albany on May 14, 2024. Much of the legislation discussed at Courage at Congress has New York State equivalents, which we will discuss with New York State legislators. Join us to ensure the New York State Legislators hear you!

Register to join us in Albany!