Since last August, Jennifer Bute, a health communication expert in the School of Liberal Arts at IUPUI, has had a seat on a new national board that was formed to help Food Allergy Research and Education prioritize its research initiatives. FARE is the leading U.S. organization dedicated to advocacy for research and education about life-threatening food allergies.
Bute was one of about 40 researchers, patients and caregivers selected by the organization to serve for two years on its Outcomes Research Advisory Board.
She brought her expertise as an associate professor of communication studies to the post. She also brought the concerns of a mom of a 6-year-old boy who has a life-threatening allergy to peanuts and tree nuts.
She has the opportunity to work with other members of the advisory board to inform and help develop a patient-centered research agenda related to food allergy diagnosis, management strategies, therapeutic options and disparities in care among some minority populations.
There are 15 million Americans with food allergies, including those at risk for life-threatening anaphylaxis. This potentially deadly condition affects 1 in every 13 children in the United States.
Since being appointed to the board, Bute and fellow board members have been working to prioritize what they think are some of the most pressing research needs.
For Bute, two food allergy-related concerns head the list.
“The first is the diagnosis of a food allergy, which is confusing and frustrating,” she said. “The testing that currently exists for food allergies has a 50 to 60 percent false-positive rate, which means that people are often told they have food allergies they don’t have.”
When Bute’s son was first tested for food allergies, she and her husband were told that he was allergic to everything he had been tested for, including peanuts and tree nuts as well as milk, wheat, soy, corn and other foods.
“It was really only through my own research that I figured out it was not true,” Bute said. After the initial testing, the Butes found a food allergist who helped them understand what their son’s allergies really are.
The second frustration has to do with determining whether a particular product is safe to eat for a person with food allergies.
If a product contains one of the top eight allergens as an ingredient, regulations require that product’s label to identify that allergen, Bute said. But labeling regulations become confusing when it comes to cross-contamination.
“Say I want to buy a loaf of bread for my son, and that bread was processed in a manufacturing facility that also processes cookies that contain peanuts,” she said. “It’s possible that peanut residue could get into the bread even if the bread doesn’t have peanuts as an actual ingredient.
“But the manufacturer is not required to label for cross-contamination. That is voluntary. Some choose to label for cross-contamination; some don’t. And even when they do, the wording on the labeling is not regulated. A label may say ‘made in a facility with peanuts’ or ‘may contain peanuts’ or ‘processed on equipment that uses peanuts,’ but there is no standard definition for what each of the labels means.”
As she learns more about the state of food-allergy research, Bute says, she has become cautiously optimistic about the potential impact of research on food allergies.
She cited development of a patch that is worn on the skin that can, over time, help prevent a life-threatening reaction to an accidental exposure to peanuts.
“It doesn’t mean a person with an allergy to peanuts can eat peanuts or peanut butter, but it would mean if you accidentally took a bite of a cookie with a peanut in it, your reaction would not be life-threatening,” she said. “I think that’s promising.”
At the same time, she has become a little less hopeful about an improved diagnosis process after learning about the complexity of the human immune system. “I am still uncertain about how we can diagnose food allergies more accurately,” she said.
Before joining the advisory board, Bute said, she was definitely more pessimistic, especially about potential treatments.
“I now know more about what’s going on behind the scenes and have had the opportunity to meet some of the research scientists funded by FARE,” she explained. “I see how passionate those people are about addressing this issue, so it definitely gives me more hope. There are really smart, thoughtful people who are working on this problem, so I think there’s good reason to be more optimistic.”