Coverage for PKU varies from state to state, although 39 states have passed legislation that requires at least some coverage of medical foods. Some states have passed legislation to mandate insurance coverage for PKU, while others provide medical foods directly to PKU patients through newborn screening or state health department programs. Click here for State Statutes & Regulations on Dietary Treatment of Disorders Identified Through Newborn Screening as of November 2016.  

Even with state mandates, the Employee Retirement Income Security Act (ERISA) prevents many families with self-insured health care plans to actually get coverage for medical foods despite recognized standards for PKU treatment. For a summary of ERISA in relation to PKU, please click here...>