Lelia, Age 2
For our family, the most meaningful part of medical nutrition coverage would be hope and confidence for the future. We have coverage for the moment (after going through the petitioning process with our insurance), but I worry what could change in my husband’s company, what would happen if we ever move to a different state, and how things will change for our daughter once she grows up and moves out. Right now, we make most of her low protein foods from scratch because low protein food is so expensive. Having more options and more accessibility would mean the world!
In general, having access to medical formula (a PKUers almost exclusive source of protein) and medical foods mean long term health and a good quality of life. I am so thankful when I think about the lives that have quite literally been saved from newborn infant screening and early detection of PKU and other metabolic disorders (the thought of what my daughter’s life would be like if her PKU had not been detected makes me shudder). But life-long access to these low-protein medical foods is the only sustainable answer to that detection! My daughter’s and so many other’s health is on the line. Medical foods simply are NOT available in your neighborhood grocery store and they are astronomically expensive for the average family. Insuring access to medical foods is the SIMPLEST answer for long-term health and quality of life. It is the EASIEST answer that does the most good for our children and our cities.