Remington, Age 18

Remington was diagnosed with eosinophilic esophagitis as a toddler. By the time he was 3 years of age, it became clear that food was worsening his condition. By taking so many foods out of his diet, he was at risk for malnourishment, so the doctor prescribed elemental formula. After a few months, it was determined that the best course of action for him was to remove all foods from his diet. Any food he tried to eat would make him violently sick. He gagged, vomited and was in constant pain. We had no choice but to nourish him only with the special formula.

Remington continued to try to add food back into his diet over the years, all with the same result. He continues to rely on elemental formula as a sole source of nourishment. Up until last year, the Walls family was fortunate to have insurance coverage for Remington’s formula through a self-funded insurance plan. When they had to change plans, family was devastated to learn that coverage was no longer offered. The Walls family had no other option at that time than to pay out-of-pocket for the formula that Remington needed to survive.

Remington is now approaching adulthood, and the amount of formula he needs to live has increased over the years, resulting in an estimated $26,000 annual expense. That’s more than $2,000 a month – the equivalent of an extra mortgage payment for some.

“We are your average American family,” says Remington’s mother, Stephanie. “I am a teacher. My husband is a line man. We simply don’t have the means to cover this therapy. And it’s his only option.” Until there is a cure for this terrible disease, Remington must have this formula to keep him alive. “Last year, when we faced the reality that his formula was no longer covered by insurance, we worried about how we were going to meet his needs. Fortunately, Michael’s employer graciously agreed to cover Remington’s therapy,” says Stephanie.

In the fall of 2019, Remington headed off to college and is already taking into consideration how formula coverage could impact his hopes, dreams, and potential. In addition to common stressors for teens his age, Remington also worries about how he will afford therapy and nourishment as a newly independent adult. “My future direction – who I will work for, where I live – will be determined by which employer offers an insurance plan that covers my treatment,” Remington shares. “I feel that not having insurance coverage of medical foods will greatly impact my potential and ability to pursue opportunities in life. I already have to overcome so much more than kids my age but unfortunately am concerned with how I’ll be able to financially sustain myself after college.”

“Medical foods aren’t a diet preference,” Stephanie underscores. “Remington would love to be able to eat food like his friends do, to have freedom to travel without immense planning to ensure he has enough formula and a way to carry it, to worry about his education and not about how he will manage the financial strain himself as he enters adulthood. And that’s not fair. That’s not the American way.”

Leave a Reply

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.