Having full and mandatory coverage would release a lot of strain on our annual budget and give us peace of mind. Trying to get coverage in Georgia has been very stressful. We have had years of zero coverage. We had to seek out help from relatives to help cover the cost of formula because it is an absolute necessity. We are financially in a better position than many PKU we have met over the years. I am saddened at how regularly they worry. The diet alone is such a burden and challenge; we don’t need to have the lack of medical coverage added to the list of burdens. In a few years, I will be expected to secure a good job with benefits. I think about that day and how I might not get coverage for my PKU, yet we have always paid into private insurance. High phe levels are unacceptable, but the cost can be more than most can afford. I really hope for peace of mind! I am currently under my parents plan while I complete college. Their monthly premium exceeds $2,000 a month. This is the only plan they can find that will cover formula (only) for my sister and me. I worry about Finding adequate health insurance for myself after college.

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.