Mayes, Age 4

Mayes was diagnosed with EoE and EC at the age of 15 months old, after a long and painful process of seeking a diagnosis. He was labeled as failure to thrive, experienced daily pain, and yet, lived each day with an unexplainable joy. Since that time, he has undergone more than 7 scopes with biopsies. To best manage his disorder, we are forced to eliminate multiple food groups. As such – it is imperative we supplement with formula for caloric needs and vital nutrients. Mayes gleans over 400 calories a day from his supplementation, which is a significant amount considering his metabolic demands at 4 years old. This year, we went through the process of progressing him from amino acid based formula to supplemental plant based formula. insurance has denied this particular formula, and demanded we trial other formulas for possible coverage. We complied with each request – and my son suffered in pain as his body did not tolerate the formulas offered. As a mother, I had to balance complying with an insurance policy while also listening to my sons complaints of pain and monitoring his symptoms. Ultimately, his body rejected every other formula trialed. When we presented this information to insurance, we were given a blanketed response of “strict policy exclusion”. It didn’t matter what I had just put my son through – in the name of insurance – he was still just a policy number. As such, I now pay out of pocket each month for his supplies. As a single mother, it is quite the sacrifice yet no sacrifice is too great for the basic rights of life. I implore our policy makers to consider this information as they make their decisions. I pray they see the face of a child and not just a piece of legislative work. Our insurance originally approved amino acid based formula but once he aged and matured to a different supplemental formula, coverage was denied.

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