We have three beautiful children, two of which have PKU. We spend over $120 a month on medical formula, foods, and medication for PKU. If medical nutrition were to be covered, we could breathe easier knowing our children would receive what they need to live healthy lives. As a parent, I am constantly consumed with worry and anxiety about how my children will be able to afford these items as young adults. My husband is self-employed as a house painter. As such, some months are stronger financially than others. This is also a concern when we are in a leaner month. To have a guaranteed medical nutrition coverage would be a complete lifesaver – literally and figuratively.
I have BCBS of NJ Horizon Direct Access insurance through my employer. We pay approximately $60 a month For Kuvan, amino acid formula, and doctor visits. We also use GMP formula, but we qualify for co-pay assistance. In addition to these costs, I also pay at least $60 a month in specialized foods for the low-protein diet. This may include medical food purchased from CamBrooke Therapeutics and other low-protein food providers.