When Diana Hanley’s daughter Jamie was a baby, she wheezed every time she got sick. She had her first allergic reaction to eggs at 11 months. Around age 2, she was diagnosed with a peanut allergy. And because of constant hives, many foods were removed from her diet.
At age 3, Jamie was diagnosed with asthma and chronic idiopathic urticaria. But thankfully a number of foods were successfully reintroduced. The only foods that she remains allergic to are egg, peanut and shellfish.
Today, at age 11, Jamie still wheezes when she gets sick. She is also allergic to penicillin and has several environmental allergies, including pollen, grass and trees. In spite of her asthma and allergies, this middle schooler lives a full life as a ballerina and participates in weekly strength and conditioning training.
To manage her asthma and allergies, Jaime gets allergy shots, takes a long-term control inhaler twice a day and always carries her quick-relief inhaler and epinephrine auto-injectors.
“She is the kid that does great day to day, but when she gets sick, she falls off a cliff,” shared Diana. “The moment Jamie gets sick, we are on high alert watching her lungs for signs of distress.”
One day, Diana saw AAFA post on Facebook looking for people to participate in patient-centered outcomes research about asthma. She responded that she would like to help. Diana now serves on the advisory board for AAFA’s Asthma in Families Facing Out-of-Pocket Requirements with Deductibles (AFFORD) Project, a study funded by the Patient-Centered Outcomes Research Institute (PCORI).
The goal of the AFFORD Project is to better understand how different types of insurance plans affect the experiences of people with asthma and their families.
“As a parent living in both a food allergy and asthma world, I am deeply dismayed to learn about people that aren’t giving their children medicines that are life-saving because they can’t afford them,” shared Diana.
This struggle is why it is important to her to contribute to the AFFORD Project. She enjoys participating in quarterly conference calls with the advisory board and providing a parent’s perspective to try to figure out how to help people with asthma maintain their treatment plans.
“I want to show my daughter how she can thrive in this world even with her asthma and allergies,” shared Diana.
It is Diana’s hope that the AFFORD Project will help doctors find a way to help more people with asthma overcome barriers to maintaining their asthma treatment and do just that — live.