Our beautiful baby boy Aidan was born last July and shortly thereafter diagnosed with PKU. Once we learned he could grow and develop normally on a strict diet, we were immensely relieved. However, the last year has been fraught with stress as we have navigated insurance coverage for formula and medical food. On January first when our insurance plan changed, those stresses started all over again, trying to learn what would be covered and at what cost and percent. Right now we are incredibly lucky- that we are residents of Massachusetts and so some coverage is required. Currently our insurance provides coverage for medical food, we first needed to meet a $1000 deductible. For our family, after also having several thousand dollars in medical bills, this was another financial stress. And then came the worry of ensuring our plan didn’t change again and we didn’t lose coverage, knowing it would mean we wouldn’t be able to afford to buy medical food for our son. For us, this will be a stress every year and every time a notice comes from the insurance company. But my heart goes out to families who live in states that do not require coverage. Medical PKU food is INSANELY expensive. Trying to keep your child healthy and also full without medical food is nearly impossible. The number of times you have to say “no” to a PKU child and the constant worry about running out of foods they can eat, or whether you will be able to afford it. An teenage or adult with PKU without access to medical food will have a nearly impossible time adhering to their diet. Please make this mandatory requirement for coverage. We are covered by my husbands medical insurance, we have a $1000 dollar deductible and then food coverage up to $2500.
Patients & Providers for Medical Nutrition Equity
Working to secure access to medically-necessary nutrition for all.