Our employer sponsored healthcare does not cover any of the cost related to my son’s metabolic formula. Because of the cost we elected to enroll in our states children’s special illness healthcare program. It costs us about 150.00 a month to pay the additional insurance premium but Gannons formula would cost at least double that monthly. Gannon has now started transitioning to solid foods but the cost of his special low protein foods is already adding up. I feel very fortunate that our state has the children’s special healthcare medicaid available, however it shouldn’t be necessary to have to pay an additional insurance premium to cover medically necessary food for my child. Our employer sponsored coverage is through Aetna and they will not cover the PKU medical formulas because they are oral formulas instead of enteral. Essentially our insurance says they aren’t deemed medically necessary unless they have to go through some version of a feeding tube. We now pay for an additional special state funded medicaid to cut the out of pocket cost down.
Patients & Providers for Medical Nutrition Equity
Working to secure access to medically-necessary nutrition for all.