Food Allergy Meeting
Allergy & Asthma Network joined with a group of organizations in hosting an externally led Patient-Focused Drug Development (PFDD) meeting for food allergy in September 2021.
The PFDD meeting was held in Bethesda, Maryland. Patients and caregivers shared their experiences living with food allergies. They also shared what is most important to them about current and future treatments.
After the meeting, the organizations – called the Food Allergy Collaborative – produced the “Voice of the Patient Report.” The report summarizes the findings from that meeting. It also includes findings from written comments from patients and caregivers. The FDA can use this report to inform the patient perspective for the drug development and evaluation process.
Key Findings of the Voice of Patient Report
During the PFDD meeting, patients and caregivers shared with the FDA the daily challenges they face managing food allergies. These include:
- the need for constant vigilance to prevent a food-allergic reaction
- the need to educate others about food allergy and gain understanding and acceptance
- how they feel isolated or stigmatized because of their food allergy
- how fear of exposure causes them to limit or avoid social events or not eat in public settings
- The disproportionate impact of food allergies on low-income families and Black and Hispanic/Latino communities
I was afraid to eat anything outside of the house for fear that I would have a reaction. I was afraid to let my daughter participate in any event that had food for fear that she would have a reaction. I was afraid to live. I honestly couldn’t tell you how many life events we missed out on because of my fear, but I can tell you that it is not fun to be sitting on the sidelines, watching everyone else do life.
Patients and caregivers shared their concerns with the lack of food allergy treatment options. As of October 2022, FDA has approved only one treatment: a peanut allergy oral immunotherapy pill for children ages 4-17.
Many patients and caregivers are told that allergen avoidance is the key to managing food allergies. This is not always possible, however. Allergen avoidance is difficult for people who live with food insecurity. It can also cause anxiety, especially in social settings. During the PFDD meeting, patients and caregivers called for clearer and more consistent labeling on food products. They stressed that food should be considered a medical necessity.
Food avoidance has been financially challenging for our family. I’ve experienced this firsthand as a mother with limited resources dependent upon nutrition assistance programs.
Patients and caregivers also urged for alternatives to epinephrine auto-injectors. These are currently the only available treatment for a severe allergic reaction, or anaphylaxis.
Patients and caregivers cited several areas where more research is needed. These included:
- allergy prevention and treatments that address the whole person;
- the relationship between food allergies and other allergic diseases;
- early intervention treatments;
- translation of information on auto-injectors into different languages.
The food allergy community needs three things right now: accurate and definitive diagnostic tools; accessible therapies with lasting results; and less invasive emergency medicine to combat anaphylaxis.
Allergy & Asthma Network is grateful for the work of the collaborating organizations:
- Asthma and Allergy Foundation of America
- Elijah-Alavi Foundation
- Food Allergy Anaphylaxis Connection Team
- Food Allergy Fund
- Food Allergy Research and Education
- Food Equality Initiative
- Kimberly Desai (patient representative)
Watch the livestream of the 2021 externally led Patient-Focused Drug Development Meeting