Nearly every American is touched by serious chronic illness, either as a patient or as a caregiver. The federal government recognizes the far-reaching effects of such conditions, and agencies like the National Institutes of Health and Centers for Disease Control and Prevention conduct surveillance of these diseases. Such research allows us to better understand the burden of different diseases, develop new treatments and prevention practices, and protect the public’s health. And it is why surveillance programs exist for virtually every major disease and illness impacting the American public.
Despite this fact, there is no equivalent program in place for the 15 million Americans with food allergies. The need for more reliable data is even more critical in the wake of new findings that anaphylactic reactions to food have increased at a staggering pace over the past decade, rising 377 percent between 2007 and 2016. The fivefold spike in insurance claims for food-induced anaphylaxis is yet another indication that food allergies are a significant and growing public health concern that demand greater attention from scientists, policymakers, public health officials and health care providers.
As members of the Outcomes Research Advisory Board (ORAB) established by Food Allergy Research & Education (FARE), we are well aware of the urgent need for better data about the prevalence, severity, and effects of food allergies. Our participation in the ORAB is part of a multifaceted effort to address problematic gaps in existing research. Comprising key stakeholders, including food-allergic patients, caregivers of food-allergic children, clinicians, school nurses, research scientists and food allergy advocates, the board’s mission is to develop a patient-centered research agenda related to food allergy diagnosis, management strategies, therapeutic options and disparities in care.
All of us on the board – like millions of others in the country – have intimate knowledge of the daily struggles involved in living with food allergies. We know how managing a food allergy permeates every aspect of social life — planning meals, grocery shopping, dining out, traveling, attending school, interviewing for a job, celebrating birthdays and holidays — just to name a few. Most of us have witnessed or experienced anaphylaxis. Many of us have endured society’s tendency to trivialize and belittle the food allergy experience. All of us share a passion for speeding advances in food allergy research.
Although the past decade has been marked by a dramatic spike in food allergies, research lags far behind. There is no FDA-approved treatment to prevent food allergy symptoms; the epinephrine auto-injectors that patients carry at all times are used to stop an allergic reaction already in progress. Thus, strict avoidance of allergic triggers and constant, daily vigilance by patients and families are the only existing “treatments” for this increasingly common, all-encompassing, potentially fatal health condition.
In 2016, the National Academies of Science, Engineering, and Medicine called for the collection of high-quality data to enhance our knowledge of food allergies. We need improved surveillance systems to monitor and track the frequency of new food allergy diagnoses and the number and severity of allergic reactions. It is incredible that experts do not have the information necessary to cite precise data regarding food allergy. This lack of reliable data has led FARE to launch a ground-breaking registry that could change the face of food allergy research for decades to come. The FARE Patient Registry is a patient-powered resource created for individuals and families managing food allergies. This vital tool will harness the power of patient data to accelerate research toward revealing the causes of food allergy, uncovering why food allergy rates have increased in recent years, and identifying which treatments might be most effective for individual food allergy patients. If you are a food allergy patient or the parent or legal guardian of a food allergic child, we urge to enroll in the online registry. Your support is essential to assist scientists, public health professionals and policymakers make more timely and effective decisions to address this public health crisis.
Jennifer J. Bute is an associate professor, communication studies, Indiana University School of Liberal Arts, Indianapolis, IN. Meghan Gutierrez is a member, FARE’s Outcomes Research Advisory Board.
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