State Statutes & Regulations on Dietary Treatment of Disorders Identified Through Newborn Screening

Authors Catalyst Center

Date 2023

Keywords CYSHCN, Financing, Maternal and Child Health

Every state has a Newborn Screening (NBS) Program which screens newborns for a variety of health conditions, including selected inborn errors of metabolism (IEMs) and other genetic disorders. Individuals with genetic conditions identified through NBS programs often require Modified Low Protein Foods (MLPFs), medical foods, dietary supplements, or other dietary treatments as well as enteral feeding supplies. Due to the wide-ranging funding mechanisms across states, coverage for these categories of products and supplies varies based on type of insurance coverage (e.g., public or private), type of health plan (e.g., individual, group, HMO), and any coverage and or related services that Title V or other state programs may fund.

This resource provides information about state-specific legislation that mandates the coverage of medically necessary foods by employer-sponsored health insurance and Medicaid, and coverage and related services funded by other state programs such as Title V or relief funds. It also details the covered services as well as any benefit limits or age and income restrictions. This report builds on a 2008 report of the same name by Alissa Johnson, and an update to that report from the Catalyst Center and the National Coordinating Center for the Regional Genetics Networks (NCC) published in 2016.