FARE's Summer of Advocacy

By Lisa Gable and Jon Hoffman

The food allergy community needs better labeling, access to real treatments and, ultimately, a cure. FARE tackled each of these challenges this summer.

BUILDING MOMENTUM IN CONGRESS FOR MORE RESEARCH AND SESAME LABELING

You’ve likely heard our mantra this summer: There are 32 million people with food allergies. Yet, there are no treatments available.

That is why we’re mobilizing the food allergy community to tell Congress to pass the FASTER Act. 

The FASTER Act lays critical groundwork for accelerating urgently needed research and regulatory reforms to find food allergy treatments and cures. And, it updates labeling laws to require the inclusion of sesame as an allergen.

The first step in passing this bill is getting more Congressional co-sponsors. FARE Advocates have responded to the challenge! This summer, we sent over 5,000 emails to Congress, and 300 FARE Facebook followers signed a petition urging the House to pass the FASTER Act. When legislators were back home in August, we scheduled meetings to ask for their support face to face.

Thanks to the efforts of our advocates, the bill now has 28 bipartisan co-sponsors, a 50 percent increase since July!

If you haven’t sent an email to your member of Congress yet, it’s not too late! Visit our Action Center page to send yours.

 

HELPING PATIENTS ACCESS NEW IMMUNOTHERAPIES

In June, we reported that the Institute for Clinical and Economic Review (ICER), a nonprofit that reports on the value of therapies, was examining the cost-effectiveness of two new peanut immunotherapies—AR101 and Viaskin® Peanut—compared to avoidance and epinephrine use. These therapies, if approved by the Food and Drug Administration (FDA), would be the first ever food allergy treatments approved for patient use.

In July, ICER issued a final report stating the clinical evidence for both treatments does not yet demonstrate that the long-term benefits of desensitization outweigh the short-term risks. We issued a statement detailing our strong opposition. Despite direct testimony from FARE and others, ICER’s findings did not adequately incorporate the patient’s perspective and the food allergy community’s growing need for real therapies.

In September, representatives of the food allergy community prevailed. Lisa was joined by families who suffer from peanut allergies at the FDA Allergenic Products Advisory Committee’s hearing on AR101. Food allergy advocates sent a clear, strong message that new therapies like AR101 are needed to improve patients’ lives. The Advisory Committee approved AR101 by a 7-2 vote. The FDA will take this vote into account when making their decision on AR101, which is expected in late 2019 or early 2020.

It is FARE’s goal to make sure our community has affordable access to treatments. We will be working with patients to ensure their voices continue to be heard—and taken seriously—throughout this process.

If you have questions about any of these issues, send us an email.

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