My insurance provides coverage of Ashlynn’s PKU metabolic formula, ONLY after we have met her deductible. They cover NO medical foods for her which are extremely expensive. They do not fully cover her mandatory blood tests, only partial until we meet our deductible AND out total out of pocket expenses.

What would having coverage for medical nutrition mean for me and my family? Well it would mean a whole lot. Medical foods are extremely expensive and when you and your husband work full time and make enough to pay the bills, mortgage and food for yourselves while saving money to buy your daughter the necessary low protein foods she needs, it means a WHOLE lot. If we could save more money to pay off our debts, pay for preschool, have another baby it would mean the world to us. When I call to refill my daughter’s formula prescription and hear that I owe $1,000 for two boxes that will last us a month I cringe and ask myself why I have to cover and pay so much cost for a medically necessary formula for her? She needs this formula and her low protein foods for the rest of her life. A package of regular spaghetti which costs between $2.00-$4.00 for a normal individual is $11.00-$15.00 for someone with PKU. This is just ridiculous! Individuals like my daughter need these formulas and foods to stay healthy… their health depends on it. Their financial lives, and their family’s financial lives depend on it too. We need to see change.

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