Abstract
Newborn screening for inborn errors of metabolism (IEM) is a model of preventative medicine in public health. The primary treatment for about 30 IEM depends on medical foods as defined by federal legislation. Insurance reimbursement for medical foods in the United States is typically denied despite recognition of the therapeutic legitimacy of those foods. State legislation mandating medical food coverage represents a chaotic patchwork of laws limiting treatment of different disorders and medical food options. In addition, obstacles within the healthcare system also interfere with reimbursement. Families dealing with the same disorders in different states are faced with an inequitable financial burden. Federal standards for healthcare benefits should be established, recognizing the existence of rare diseases and the treatment requirements in relation to the developmental needs of children and adult metabolic homeostasis that will support uniform reimbursement.