Isabelle has Classic PKU. She is 2.5 years old and can have 3 grams of natural protein per day. For context, one 8 oz glass of milk has 8 grams of protein – 2.5 times Isabelle’s daily allowance. Isabelle relies heavily on medical supplements (formula, PKU gel, and low protein medical food) to meet her nutritional needs. We live in California which requires coverage for PKU formula. My employer however has a self-funded plan which I have learned means despite being in CA, the same coverage requirements do not apply. My employer provided insurance excludes PKU formula. We will continue to fight the denial of coverage but the above is our estimated out of pocket cost of buying formula, PKU gel, and low protein food direct. We are left purchasing Isabelle’s medically required food and supplements 100% out of pocket and without the cost even applying to a deductible. It is a financial struggle. The MNEA would not only help our family financially but would mean that when Isabelle grows up she would not have to worry about what state she is in or whether her employer has a self funded plan. The MNEA means Isabelle can make decisions based on her own dreams rather than if she’ll be able to afford the nutritional supplements required to keep her healthy.
- Nia, Age 3