In 2016, we saw research highs, the lows of controversy, plus a silver lining of empathy and awareness.
It was a quarter of a century ago that one of FARE’s legacy organizations, the Food Allergy & Anaphylaxis Network, was founded by a food allergy mother determined to help others learn how to keep their children safe. Since that time, media coverage of groundbreaking research, public awareness campaigns and tragic fatalities have all contributed to improvements in the way people talk about food allergies. However, several events over the past year have highlighted how much remains to be done.
From the national coverage early in the year of the LEAP-On Study – a prevention study that has argued for major changes in recommendations on early infant feeding – to the palpable outrage we saw over the cost of epinephrine – food allergy was a prominent topic. The public discourse revealed that most food-allergic families still have important unmet needs, whether for information on feeding or for affordable drugs. As the head of a patient advocacy organization, I couldn’t help but be moved.
Families shared painful experiences of struggling to afford epinephrine, a lifesaving medication that no food-allergic individual can be without. They spoke of the sticker shock of $700-plus devices, about carrying expired auto-injectors or splitting two-packs of medication and hoping for the best. No parent or person with food allergies should have to experience this. The outrage was so great that we saw a shift in the narrative: more Americans started to pay attention and empathy for families managing food allergies reached a new level. This was the silver lining in this sordid mess.
As the news coverage waned, FARE’s advocacy work continued. We highlighted the issues in the national press and encouraged families to tell their legislators about the issues of access and affordability of epinephrine. Even with the imminent return of substantive competition in the auto-injector arena, we know that these challenges are not about to disappear. Increasing numbers of families find themselves in high-deductible and higher co-pay health plans, and we need action – so that the problem of paying thousands of dollars out-of-pocket for auto-injector sets doesn’t recur when families renew prescriptions at the start of the next school year.
On a positive note, in 2016 we saw the expansion of two vitally important programs: the FARE Clinical Network and the FARE College Food Allergy Program. We’re now supporting the efforts of 28 clinical care and research facilities across the country at an annual investment of $2.7 million. Over the first year of the network, member centers served more than 56,000 patients with food allergies, at least one-third of whom were new to those centers, reinforcing the urgent need for the initiative. In the future, we hope to expand the network to 40 to 50 sites. We also spent approximately $7 million on research as FARE continues to lead the way toward expanding access to clinical trials and high-quality food allergy care. FARE’s community engagement team is working with Clinical Network sites to address the needs of families managing food allergies in the areas of education and advocacy.
With help from committed members of the community, in 2017 FARE also will continue the work it began this year to develop a patient-centric food allergy research program through the formation of the Outcomes Research Advisory Board. The board, which includes parents, advocates and physicians, will play a key role in defining priorities and shaping research initiatives.
While we view the investment in food allergy research as mission-critical, just as important is our ability to support educational programs that will improve the quality of life of all who are affected by food allergies. In 2016, we broadened the reach of our college program, increasing to 25 the number of colleges who are piloting our national food allergy guidelines across the nation. That number will grow over the next years, and we will continue to devote resources to supporting education needs in the K-12 as well as preschool levels.
The year 2016 also saw a surge in the popularity of the color teal. Long associated with our cause, we were thrilled this year to see the iconic Empire State Building glow in teal during Food Allergy Awareness Week for the first time. We were also incredibly excited to see the tremendous growth of the Teal Pumpkin Project, a campaign that is being warmly embraced both within and outside of the food allergy community.
All of these initiatives serve to catapult food allergies into the spotlight as we move into 2017, thereby educating countless individuals about the severity of food allergy and highlighting our community’s unmet needs. However, none of this – the advocacy work, the advancement of lifesaving research and the Teal Pumpkin Project – would be possible without you. We are humbled to continue our work – and believe that together we can improve the lives of individuals with food allergies.
Dr. Jim Baker is the CEO of Food Allergy Research & Education (FARE). For more information, visit Foodallergy.org. This article was first published in the Winter 2016-2017 issue of Allergic Living magazine.