Elliott is just over 1 month old and we were unaware that we were carriers for PKU. Living in Michigan, we recently learned that our insurance does not cover formula or low-protein foods for PKU. The newborn screening is nationally mandated, and PKU is a very closely monitored condition. We were recently told that the only insurance that covers formula in Michigan is Medicaid. Our income is too high to qualify for Medicaid, so we will be expected to pay for this out of pocket. This formula is a prescription and it only makes sense that it should be covered due to the medical necessity for our son. To have Elliott’s formula and medical nutrition (low protein foods) covered by insurance would be a huge relief. The formula is extremely expensive and we haven’t even gotten to the foods yet, but I’m sure those are not cheap either. It would mean so much to have coverage to help with this financial burden.
- Kathy, Age 55