Jamus, Age 9

My son, Jamus, has FPIES plus and our medical team thinks he has something that doesn’t even have a name put to it yet. He will turn 9 on Thursday and he has NO SAFE FOOD. He is 100% tube fed elemental formula. We had to pay out of pocket for his formula for the first 1 1/2 years he was on it. We exhausted our savings,racked up credit card debt and could barely afford to feed our older son healthy food. As parents, we ate a lot of ramen noodles which didn’t help our health at all. We finally agreed to have a NG tube placed when he was 2 1/2 years old which then was replaced with a gbutton. It was truly a godsend. Every year , sometimes every month, we fight for continued coverage of formula with insurance. It is an exhausting fight but we have to have insurance coverage otherwise we have to choose between formula, which keeps Jamus alive, or paying our bills , which keeps a roof over our heads. The photo I included is my older son eating food while Jamus eats his powder. Every day, every meal, he has to watch others eat food while he eats powder or ice chips.

My son receives 100% of his nutrition from elemental formula. It literally is what keeps him alive. Right now our primary insurance pays a little less than 50% of the cost of his formula. And to get that is a fight every year. My son is also on a waiver which than qualifies him for Medicaid. Other than a deductible, Medicaid typically pays for the rest of his formula. But as of next month, we will most likely be denied the waiver and Medicaid because the state of Nebraska seems to think not being able to tolerate food is not a disability. My sons formula is around $3000 A MONTH through our medical supply company. If we lose Medicaid, we will pay more for my sons formula then for our mortgage payment. We are already looking into moving to a state that has better formula coverage but that would mean finding a whole new medical team, a whole new school, a whole new support team. If anyone has ever had a medically complex child, you know how hard it is to find good doctors, schools and support.

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