Claire, Age 12

My insurance company recently denied coverage for my daughter’s formula to treat her PKU. They said she can only have formula coverage for one year of her lifetime. Seriously. Only ONE YEAR! Well, she has PKU, which is a genetic disorder, and she needs formula every day of her life!

I have spent hours and hours on the telephone with the insurance company, drafting letters of appeal, coordinating with our clinic, and gathering supporting medical evidence for why kids with PKU like my daughter need formula every day. I worry what will happen if we don’t win our appeal. We do not have coverage for low pro foods and formula coverage stops at age 22. Does the insurance company really think it is okay to deny formula to a child with PKU? Do they not understand the significant medical problems this will cause?

It’s both maddening and exhausting to fight with a nameless P.O. Box. It would be so nice not to worry about whether my daughter will have her formula this year, next year, and every year after that. Living with PKU is hard enough without having to constantly fight to get the treatment that you need and deserve!

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