Insurance and Other Assistance

Treatment for PKU can be expensive, and securing insurance as an adult can be scary. Coverage for PKU-related medical foods varies from state to state, although 39 states have passed legislation or have programs that require at least some coverage. Some states have passed legislation to mandate insurance coverage for medical foods, while others provide medical formula and some low-protein foods directly to PKU patients through newborn screening or state health department programs.

To see if your state has a state mandate or program, please check out our interactive map here.

If you are facing insurance issues, the National PKU Alliance (NPKUA) may be able to help. The NPKUA’s website provides additional information on insurance appeals rights, your rights under the recently passed Affordable Care Act, and how to request a volunteer advocate to assist you with your coverage issues. The first step to understanding your coverage for medical foods is to have a basic understanding of your health insurance plan

Trying to secure insurance? Not sure what to ask to determine what insurance is right for you? Get more information about insurance on the NPKUA’s website or download the insurance section of its PKU Binder.

Patient Assistance Programs

Even with insurance coverage, PKU treatment can be expensive. MORE >

Medical Food Manufactures

Several medical food companies also have patient assistance programs to help you get coverage for medical foods. Please contact the manufactures based on the medical food you consume. MORE >

Find A Clinic

Find a clinic near you by selecting the state where you reside. MORE >