Insurance coverage of special foods needed in the treatment of phenylketonuria.

Optimal medical management of phenylketonuria (PKU) requires the use of special low-phenylalanine foods for many years. For women with PKU, elevated maternal blood levels of phenylalanine even at conception can lead to fetal damage. Despite this need, private health insurance, Medicaid, and other public health programs often exclude the cost of these foods from their benefits. The New York State Department of Health conducted a survey of metabolic disorders treatment centers to elucidate the problems PKU patients have obtaining and paying for the special foods essential to their care. Payment for special foods was denied to nearly half of those with private health insurance policies and was covered for only 10 percent of Medicaid-eligibles. A public program for children with special health care needs covered these food costs in upstate New York but not in New York City. There is no program of assistance for adults who are not eligible for Medicaid and who do not have private insurance coverage of special foods. At present, many private health insurance policies and public programs do not cover the costs of low-phenylalanine foods other than infant formula. Payment for this essential part of the management of PKU should be mandated for all public programs for persons with chronic illnesses, public medical assistance (Medicaid) programs, and private health insurance. There is a need for a public program to assist adults with PKU who are not eligible for Medicaid and who do not have health insurance that covers these costs.