Bethany, Age 19

Our BCBS does cover the Medical Formula for my daughter and does reimburse for low protein modified foods but this is never without a struggle. Michigan BCBS has their own form to submit for reimbursement for modified foods however it always takes atleast 2 or more phone calls to get the reimbursement paid. I have had to send certified letters to the Medical Director of BCBS as well to get the process taken care of and receive the reimbursement. It seems there is always another “hoop to jump through”-whether it’s them questioning a product that has been ordered and reimbursed before or not wanting to use a particular supplier. I worry about how my daughter will be able to be compliant with her diet treatment when she is no longer on our insurance and has this lifelong condition. She is also a Type 1 Diabetic and none of her medications or supplies have ever been questioned as far as coverage for this disease and although her PKU has a nonconventional treatment-yet a proven treatment-of a very specific diet and formula this is always questioned. I hope to help her future and those who do not have the insurance coverage that we have easier to navigate and provide the ability for those with Metabolic conditions to stick with the proven treatment. Michigan has Children’s Special Health Care Services and this program will cover medical formula until the child is 21. My daughter has this program as well as our Michigan BCBS as her primary insurance which covers the medical formula necessary for her treatment of her PKU. However neither program pays for the very expensive low protein modified foods that are also necessary for treatment.



Other Michigan residents who rely on medical foods