To track deaths caused by food anaphylaxis and help patients learn how to avoid these preventable tragedies, a Vanderbilt University Medical Center researcher has created the only national registry of such events. The registry gathers data and tells the stories of some of those who died, thereby educating patients through cautionary examples.
Stacy Dorris, M.D., an assistant professor of pediatrics at Vanderbilt, created and maintains the National Food Allergy Death Registry. She recently described it in The Annals of Allergy, Asthma, and Immunology.
“No one wants to talk about this condition; it’s not a popular topic,” Dorris said. “But the more details we have about how and when these deaths occur, the better equipped we can be to educate patients, clinicians and the public about how to prevent them.”
Gathering Realistic Data
Fatal food anaphylaxis has garnered little attention since the first paper about the subject was published in 1988. Yet some researchers have estimated that as many as 200 fatal food anaphylaxis events occur in the U.S. each year. Based on her own work, Dorris considers this rate exaggerated.
“Zero to 20 per year seems more realistic. We don’t want to exaggerate the risks when there is already so much fear and anxiety in these families,” she said.
Dorris identifies registry cases through searches of national media, voluntary submissions and word of mouth. She evaluates each submission for authenticity, and then asks the person’s relatives for permission to include their relation in the public registry. She interviews the relatives and reviews medical records. Some families provide a photo and written profile of the young person involved.
“We don’t want to exaggerate the risks when there is already so much fear and anxiety in these families.”
“It’s eye opening for patients to see these images of other kids just like themselves,” Dorris said.
In the past 10 years, she has registered 110 cases (33 percent female, 67 percent male). Ages ranged from 2 to 58 years, with an average age of 18. About seven cases are reported each year. The most frequent location is a restaurant (19 percent), with only 9 percent of the incidents occurring in the person’s home.
Stories that Educate
As several profiles describe, most victims of fatal food anaphylaxis are adolescents. “They may have been excellent at avoiding their allergens all through childhood, but as teenagers, they get lax. They eat a cookie thinking it’s a sugar cookie, and it’s peanut,” Dorris said.
“As teenagers, they get lax. They eat a cookie thinking it’s a sugar cookie, and it’s peanut.”
Deaths often occur when young people are on excursions with friends, far from medical help. “You only have minutes to get that epinephrine into the body,” she said. A young person’s friends often don’t know how to help, even if the victim has an auto-injector. “Adolescents often do not carry the two epinephrine auto-injectors recommended by guidelines.”
“Another problem is that there are shortages of EpiPens, and the prices have gone up dramatically. They can be very expensive,” Dorris said. A pack of two generic epinephrine auto-injectors costs about $400, she says. The pens expire and must be replaced regularly.
The latest efforts to soften a person’s allergic reactions to triggering foods include oral immunotherapy. “The patient consumes minute doses of the allergen, or absorbs them through a patch, to build up some tolerance,” Dorris said, though she adds, “This approach is not curative.”
Additionally, in January 2020 the FDA approved the first drug for the treatment of peanut allergy in children aged 4 to 17. Palforzia does not cure peanut allergy but moderates allergic reactions in patients who must continue to avoid peanuts.