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Around 32 million adults and children in the United States have food allergies.1,2 People who manage food allergies carry a significant emotional, social, and financial burden.

To bring the voice of patients and caregivers impacted by food allergies to the forefront of drug treatment development and research, the Food Allergy Collaborative (FAC) collected insights and perspectives of people living with food allergies to produce the Voice of the Patient Report: Food Allergies.



READ THE REPORT



The report highlights the importance of:

  • The patient and caregiver in managing food allergies
  • The challenges in educating people about food allergies
  • The stigma that patients feel and the daily challenges that patients experience
  • The need for less invasive, more accurate diagnostics
  • The need for emergency medicine that is easier to use
  • The need for better and more consistent food labeling
  • The need for a faster process for new drug treatments

Now we ask that all stakeholders work together to improve the quality of life for people living with food allergies. Together, we can take steps to improve food allergy education, advocacy, research, and drug development.

The Value of Patient Perspective

Your stories help us raise awareness about managing food allergies. The FAC held an externally-led patient-focused drug development (PFDD) meeting on Sept. 9, 2022. The meeting brought the food allergy community together to tell the Food and Drug Administration (FDA), pharmaceutical companies, and other stakeholders what is important to people living with food allergies.

Watch the video of the food allergy PFDD meeting

What Is the Food Allergy Collaborative?

Launched in 2019, the FAC is an alliance of advocacy organizations, those living with food allergies, and industry partners who are uniting to advance effective, patient-centered initiatives in food allergy awareness, research, and care.

The Food Allergy Collaborative includes:

  • AllergyStrong
  • Allergy & Asthma Network
  • Asthma and Allergy Foundation of America (AAFA)*
  • Elijah-Alavi Foundation Inc.
  • Food Allergy & Anaphylaxis Connection Team (FAACT)
  • Food Allergy Research & Education (FARE)
  • Food Equity Initiative (FEI)

*Kids with Food Allergies is the food allergy division of AAFA.

What Is a Voice of the Patient Report?

The FDA established the PFDD initiative to collect patient insights on specific diseases, including their impact on daily life and treatment options. PFDD meetings are designed to connect patients and caregivers directly with the FDA, as well as researchers and drug developers. Some PFDD meetings are led by the FDA and others are externally led by patient advocacy organizations. The meetings and resulting voice of the patient reports help the FDA identify what is important to patients. This includes what people want treatment to look like (apart from a cure).



References
1. Gupta, R. S., Warren, C. M., Smith, B. M., Jiang, J., Blumenstock, J. A., Davis, M. M., Schleimer, R. P., & Nadeau, K. C. (2019). Prevalence and Severity of Food Allergies Among US Adults. JAMA Network Open, 2(1), e185630. https://doi.org/10.1001/jamanetworkopen.2018.5630
2. Gupta, R. S., Warren, C. M., Smith, B. M., Blumenstock, J. A., Jiang, J., Davis, M. M., & Nadeau, K. C. (2018). The Public Health Impact of Parent-Reported Childhood Food Allergies in the United States. Pediatrics, 142(6). https://doi.org/10.1542/peds.2018-1235

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My adult son John, 32 yrs old, has been living and struggling with severe IgE-mediated nut allergies and anaphylaxis to peanuts (and all nuts) since infancy. When a college student, John was hospitalized twice for biphasic allergic reactions and anaphylaxis following accidental food exposures on campus. It is known that most adverse food exposures are accidental. For John, campus exposures happened even after my best efforts to inform and educate college food service management and administrators before John started his freshmen year

In 2013 John moved from Boston to NYC. He struggles with food safety everyday and has experienced accidental peanut exposures and has been hospitalization more than once. Food safety policies must be mandated and enforced to protect anyone at any age with with food disability. Food allergy not only impacts the physical and emotional health of those affected it is also presents a significant financial burden on society.

Additionally, scientific research of the cause(s) of IgE-mediated reactions has been slow and has been without break-throughs. Food allergy managements has not developed beyond food allergen avoidance and emergency epinephrine injection for more that thirty years,

Please respond to my comments.

Sincerely,

Sheryl Manganaro

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