Senate Bill 311

Abstract

Inborn errors of metabolism (IEMs) are heritable disorders in the biochemical processes of metabolism that occur in approximately 1 in every 1500 live births. The lifelong disorder is treatable through the use of medical foods, specially formulated foods that contain the nutritional content, and dietary restrictions customized to each type of disorder. Without treatment, the buildup of toxic substances in the blood would lead to progressive brain damage, mental retardation, and death. There are approximately 700 different types of IEMs, but today, only 30 are detectable through newborn screening. Each state has mandates to screen for such disorders at birth; however, there are no federal mandates to provide treatment for IEMs. Some states require health insurance companies to cover the costs of these expensive medical foods as treatment, but coverage is insufficient and often expires at adolescence. Senate Bill 311 (S.311), the Medical Foods Equity Act of 2011, proposes to provide coverage of medically necessary foods and other treatment costs under federal health programs and private health insurance. This bill would create uniform access to treatment for all individuals diagnosed with an IEM and reduce the financial burden on families. S.311 would also create a cost–benefit effect in which continuous treatment of IEMs would diminish the risks of developing mental retardation, a disorder that costs significantly more to treat through federal and private health care.