Adler, Age 3

Meet Adler! He is an amazing little boy that lives in rural Missouri with his Mom and Dad. Adler was diagnosed with PKU shortly after birth. With the help of his Mom, Dad and extended family his PHE levels have been well maintained and in treatment range. When Adler was born he had private insurance through his Dad’s job. Like many other insurances they only covered formula after the hefty deductible was met. Living in rural Missouri his Mom and Dad (both working full time) make enough to pay the bills, they don’t have new cars and make payments toward their modest two bedroom home; they do not however have an extra $7,200 annually to keep up with food and formula costs. Just recently Adler qualified for state insurance through MO Healthnet for kids. This program is based on family income and sadly if either of his parents get a raise at work they are at risk of losing the coverage that finally covers food and formula. Both his Mom and Dad strive to do better and move up at their jobs but are in fear of losing coverage. If Adler loses coverage his only other option would be to go on his Dad’s insurance which does not cover PKU at all! This family is stuck between bettering themselves and caring for their son. They fear for the future: What will they do if he loses coverage? What will the future look like for Alder? What if his dream job doesn’t have insurance that covers PKU, can he afford the necessities to keep himself healthy?

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