I have two sons and only Leo has PKU. We maintain a low protein diet for Leo, but due to the high cost of low protein medical foods, we spend a lot of our time cooking and finding alternative meals to keep his diet consistent. Our private insurance or Medicaid doesn’t cover the cost of these foods or ingredients, so we have to be very creative to try to make him feel that he is not eating something different than everyone else. In addition, it may not be very simple to find out the fenilalanine content of each ingredient used to make a meal (especially new products available at the store) to assure the protein content will be adequate to his diet. This act would make life much easier not just for the patient, but for caregivers, and more importantly, way more affordable! Medicaid, together with our private insurance (through employer – Independence Blue Cross) covers formula 100%, but they don’t cover any low protein foods for my son.
- Melissa, Age 26