I am a new mom and PKU adult, I rely on my medical food to provide myself and my son the necessary nutrition for everyday life. All throughout my pregnancy I was able to receive medical food coverage from my employer but recently switched to my husband’s insurance. This is when the trouble started with the self-funded insurance, no exceptions are being made for me through the HR department.The insurance policy does cover PKU, a lifelong disorder, from birth to one years old. My medical food out right costs me $10,800 year with this exclusion. I am unable to seek treatments like Kuvan because I did not respond to that drug. Medical Food and low protein foods have been and will be my only way way to treat my PKU and for now provide for myself and my infant son.
- A. Jay
- Jalen, Age 5