National PKU Alliance Asks Advocates to Contact Representatives to Cosponsor the Medical Nutrition Equity Act, H.R. 2105

The National PKU Alliance is asking advocates to contact their Representatives to cosponsor the Medical Nutrition Equity Act.

There are currently 16,500 Americans living with Phenylketonuria (commonly known as PKU). PKU is a rare, inherited metabolic disorder that causes inadequate growth, developmental delays, intellectual disability, and behavioral disorders without treatment. The first line of therapy for PKU is medical foods. The medical foods required to treat PKU cost approximately $12,000 – $15,000 per year, which is far beyond the means of most PKU families. Unfortunately, patients often find that their insurance provider will not cover medical foods. Coverage denials force patients to seek alternative, and often costlier, treatments or go without treatment altogether.

The Medical Nutrition Equity Act (H.R. 2501) would help thousands of people with PKU and other metabolic disorders afford their lifesaving treatments—medical foods. H.R. 2501 would provide public and private insurance coverage for physician-prescribed medical foods, medical formulas and low protein modified foods for children and adults with PKU and other inborn errors of metabolism. Requiring insurance coverage of medical foods will mean that families won’t have to choose between paying for medical foods or other necessities.

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