We are dedicated to empowering the MSUD community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures for MSUD.

This proposed legislation is now before Congress and needs your support and action to provide for better outcomes for MSUD patients, their families, and the rest of the MSUD community. To help you explain the need for these pieces of legislation, here are some key points to make when discussing the legislation with your federal, state, and local representatives.

The Medical Foods and Formulas Access Act of 2025

The Medical Foods and Formulas Access Act, was introduced in Congress in 2025. The Act would provide public and private insurance coverage for medically necessary foods (including vitamins) for digestive and inherited metabolic disorders.

• Digestive conditions include: inflammatory bowel disease (e.g. Crohn’s disease and ulcerative colitis), eosinophilic digestive disorders, food protein-induced enterocolitis syndrome (FPIES), IgE mediated food allergies, and malabsorption due to liver or pancreatic dysfunction, or short bowel syndrome.
• Inherited metabolic disorders include: metabolic disorders on the Recommended Uniform Screening Panel Core Conditions list of the Secretary of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children; and other genetic metabolic disorders requiring special foods medically necessary foods would be covered under Medicaid, CHIP, Medicare, FEHBP, and private insurance if they are prescribed by the patient’s provider.