FARE Joins with National Academies of Sciences, Engineering and Medicine in Call for Sweeping Changes to Improve Health, Quality of Life of Individuals with Food Allergy

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First-of-its-kind report shows need for greater food allergy resources and education in the United States and calls for close attention from public and private sectors to find effective treatments and keep food allergy community safe. The report was funded by Food Allergy Research & Education, federal agencies and other groups.

It is our hope that this report represents the beginning of a serious national conversation and meaningful actions on the need for added public and private resources devoted to food allergy.

The National Academies of Sciences, Engineering and Medicine today released findings and recommendations from a committee study examining the many fundamental and as-yet unanswered questions about the origins and prevalence of severe food allergies in the United States, the pathway to bridging these knowledge gaps, and clear approaches to understanding and building more effective prevention, management and treatment resources for those affected by food allergy.

Food Allergy Research & Education (FARE) is the lead sponsor of this report and initiated the project with the National Academies in 2013, helping to secure a diverse array of co-sponsors for the study; an advisory panel of families and individuals who live with food allergies provided their perspective to the expert committee. The report, “Finding a Path to Safety in Food Allergy,” emphasizes the need for the medical community, food companies, government officials and other stakeholders to establish and implement policy guidelines pertaining to evidence-based diagnosis and management of food allergy as well as access to emergency epinephrine administration capabilities in public venues, including schools and airlines.

On the topic of prevalence, FARE notes that the National Academies report, citing recent evidence, states that “it is likely that 3.9 to 8 percent of the U.S. population ages 18 years and younger is affected by food allergy.” FARE is supportive of the recommendations for additional rigorous studies, which will help provide a clearer picture of food allergy prevalence.

“For too long, food allergies have been minimized, little understood and stigmatized,” said James R. Baker, MD, CEO and chief medical officer at FARE. “It is our hope that this report and its significant conclusions represent the beginning of a serious national conversation and meaningful actions regarding the need for added public and private resources devoted to severe food allergy management and prevention as well as the urgent need for research, including the development of safe and effective treatments for severe food allergies. We are proud to have led efforts to undertake this far-reaching and remarkable work on behalf of the millions of American with food allergies.”

FARE is in agreement with the report’s expert committee authors, who noted that despite a mounting body of data on prevalence, health consequences and economic costs of food allergy, “this chronic disease has not garnered the level of societal attention that it warrants.” The report outlines a “roadmap to safety,” recommending six actions that should be taken to improve the quality of life and health of individuals with food allergies.

These actions, as stated in the report, include:

  • Collecting food allergy prevalence data in a systemic manner
  • Improving quality of diagnosis and providing evidence-based clinical care healthcare
  • Defining evidence-based approaches to preventing the development of food allergy, updating clinical guidelines with emerging scientific findings and understanding risk determinants
  • Improving education and training of healthcare providers, food manufacturers, school staff, emergency responders and others
  • Developing and implementing policies and related practices to help prevent and properly treat severe allergic reactions (the committee highlights need for improved food labeling; among the recommendations are that the food industry and the federal government work jointly toward a risk-based labeling system for food allergens)
  • Expanding research programs related to better diagnostics, effective management and food allergy therapies.

The committee noted that there are significant gaps in scientific knowledge and that barriers include too few research centers and researchers equipped to conduct high-quality studies. FARE is proud to be supporting research coordinators and leading allergists at 28 clinical care and research facilities across the country through the FARE Clinical Network, established in 2015 as the National Academies’ expert committee was studying this issue. FARE has identified research gaps and is investing more than $2 million annually for the FARE Clinical Network, which is creating the capacity to run late-stage clinical trials and elevating the quality of patient care.

While promising therapeutic approaches are being tested in food allergy, no effective treatments currently exist, the expert committee stated in the report, emphasizing the need for supportive services and programs for individuals and families affected by food allergies, including nutritional and psychosocial counseling. The committee also specified the need for healthcare providers to counsel their patients on allergen avoidance and anaphylaxis/epinephrine, particularly those with coexisting asthma and adolescents who are at higher risk for severe allergic reactions.

In the areas of advocacy and education, FARE has championed the expansion of access to emergency epinephrine in schools and on airlines, created evidence-based training materials for various audiences, and stands ready to provide its expertise on food allergy management with stakeholders across all settings as outlined in the National Academies’ report.

In discussing the need for improved policies regarding labeling of packaged foods, the expert committee is recommending that the priority list of food allergens in the U.S. be periodically reviewed, noting that evidence of allergy prevalence and reaction severity to sesame may warrant inclusion on this list. FARE has supported calls for sesame to be considered a major food allergen.

Finally, FARE notes that the recommendation that precautionary labeling on packaged foods be based on quantitative risk assessment may cause some concern within the food allergy community. Current advisory labeling in the U.S. contributes to confusion and risk. In the past, FARE has recommended to the U.S. Food and Drug Administration (FDA) that it not establish a threshold for any food allergen unless the FDA is in possession of reliable scientific data that clearly identifies a quantity of the allergen that is so small that it will not cause an allergic reaction in even the most sensitive individuals, and also a reliable analytical method for determining compliance with the threshold that can be easily used by food companies and the FDA. FARE looks forward to working with all stakeholders to evaluate the current state of the scientific data, analytical methods, and consumer behavior to drive towards more informative, actionable labeling for our community.

“We strongly believe that severe food allergies must be top-of-mind not only for the millions of families working to manage them, but for all who may know, treat, serve and interact with a child or adult suffering from severe food allergy,” Baker added. “We applaud the National Academies and the expert committee members for their work on this comprehensive report. It is our hope that the study will galvanize policymakers, researchers and scientists, drug companies, healthcare providers and the general public to work together to improve the lives of people who face the life-threatening risks and often isolating effects of food allergy.”

While FARE provided major financial support to the National Academies to develop this report, it did not have any influence on the development of the report nor the committee’s recommendations.

To view the full report, visit http://www.nationalacademies.org/foodallergies. For more information about food allergies, visit http://www.foodallergy.org.

About FARE
Food Allergy Research & Education (FARE) works on behalf of the 15 million Americans with food allergies, including all those at risk for life-threatening anaphylaxis. This potentially deadly disease affects 1 in every 13 children in the U.S. – or roughly two in every classroom. FARE’s mission is to improve the quality of life and the health of individuals with food allergies, and to provide them hope through the promise of new treatments. Our work is organized around three core tenets: LIFE – support the ability of individuals with food allergies to live safe, productive lives with the respect of others through our education and advocacy initiatives; HEALTH – enhance the healthcare access of individuals with food allergies to state-of-the-art diagnosis and treatment; and HOPE – encourage and fund research in both industry and academia that promises new therapies to improve the allergic condition. For more information, please visit http://www.foodallergy.org.

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Nancy Gregory
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