New Rhode Island Law Prescribes Affordable Medical Foods for Rare Diseases

From an Aug. 19 Valley Breeze article , Lincoln, Rhode Island:  Legislation requiring insurance coverage for special baby formula and prescribed food is now law in Rhode Island.

The new measure abolishes the mandated cap on coverage for those suffering from rare diseases and inherited disorders requiring prescribed nutrition mandates. The bills sponsored by state Sen. Ryan W. Pearson of District 19 in Cumberland and Lincoln, and state Rep. Raymond A. Hull of District 6 in Providence and North Providence, induced testimony from patients and family members of patients who require prescribed diets and formulas during the hearing process.

Rhode Island State Senator Pearson said in a press release that he had introduced the bill because the family of a constituent suffering from the rare disease phenylketonuria asked him for help. PKU is a birth defect that causes the amino acid phenylalanine to build up in the body. Too much phenylalanine can cause a variety of health problems, and babies, children and adults with PKU need to follow a strict diet that limits this type of protein building block. Newborns suffering from PKU need special formula that can cost around $1,000 per month placing a heavy burden on families. The legislation could also be beneficial to those afflicted with Crohn’s disease, gastroesophageal reflux disease and other conditions that may call for unusual dietary restrictions.