This column first appeared in Allergic Living magazine.
FARE’s Food Allergy Ball recently took place in New York City, and celebrated its 20th anniversary. It’s amazing that this generous effort has carried on for 20 years and it was wonderful to acknowledge that fact. You may not realize that many of the advances in food allergy research can be tied directly to the funds raised during such events.
To celebrate this 20th anniversary milestone, the FARE Food Allergy Ball honored 20 individuals who have been crucial to advancing the cause of food allergy during the past 20 years. These 20 people are most worthy of recognition and it was a remarkable evening.
However, the evening also was a bittersweet reminder that the current situation in food allergy is not where we had hoped we would be 20 years ago. Several aspects of life with food allergies remain very problematic. In health care, we are closer to new drugs and medical devices to treat food allergy, but none have been approved for use in humans. A new biological drug that holds great hope for treating allergic diseases, dupilumab, has been approved for use in eczema, but is just now being evaluated in clinical trials for food allergy.
Sadly, some issues related to food allergy treatments seem to have gotten worse. Prominent in this are concerns about the availability and high cost of epinephrine. Finally, I still continue to write personal notes to families who have lost a child, a brother or a sister. So we are not at a point where we can even prevent deaths from food allergy.
In addition, many social issues remain vexing. There has been improvement with aspects of managing food allergies, particularly in schools, and nearly every state now has an epinephrine access law. Other areas, however, remain a concern. Several airlines have used food allergy as a reason to disqualify passengers from boarding and one refuses to allow passengers with food allergies to pre-board, despite giving the same privilege to comfort animals.
Food labeling remains vague and confusing, and precautionary statements like “may contain” raise more concerns about content than they resolve. The ongoing jokes and barbs about food allergies from prominent comedians show that there is a fundamental lack of understanding of the seriousness of food allergy as an illness. This needs to change.
As I look forward to the next 20 years, I have to ask myself – what can we do that will truly make a difference in the lives of people with food allergies?
First, more investment must be made in therapies for individuals with food allergy, particularly in the development of novel drugs and diagnostics. Food allergy is not a single disease, and we need to better understand and differentiate patients if only to identify who might be helped by different therapies. FARE has facilitated this with its clinical network, which includes nearly 30 sites for human clinical trials, and its new patient registry, which will identify subgroups of patients who have different forms of allergy.
But the investment that must be made in this area is much greater than any one organization can provide, and I am hopeful that the entire food allergy community comes together on behalf of this effort. We also need a heightened emphasis on social acceptance of food allergy. In the past 20 years, we’ve done a wonderful job of educating the food allergy population, but it’s clear that there is still work to be done to explain to those without allergies why they must make accommodations.
Over the next 20 years, we also must place an additional emphasis on addressing food allergy in young adults. A recent study by FAIR Health, which manages a nationwide database of health insurance claims, showed that food allergy is rising dramatically in young adults, not just in urban areas but across the country. Adults aged 20 to 40 now account for 15 percent of the claims for anaphylactic reactions to food. These individuals need help with their social networks, their work environments and their health care to ensure that they will be able to live healthy lives.
Finally, if I have one request for the food allergy community, it is that the fragmentation and infighting stops. The confrontations I see on social media and the unwillingness of organizations to work with each other have clearly hurt our ability on important issues, such as pushing airlines for access and understanding, and pressing drug companies for better therapies. These are self-inflicted wounds that prevent progress on all fronts. Through unity of resolve and effort, we can make far greater progress in far less time.
Dr. James Baker is the CEO of Food Allergy Research & Education (FARE). For more information, visit Foodallergy.org.
Read more articles by Dr. James Baker:
FARE’s Dr. Baker on Epinephrine Access: Positive Changes, But More Choice Needed
FARE’s Dr. Baker: Facing Up to Food Fears