Medical Nutrition Equality Act

Medical Nutrition Equality Act

The Medical Nutrition Equity Act

The Medical Nutrition Equity Act will save and improve lives!

From NPKUA website: Take-Action/Medical-Nutrition-Equity-Act

Specialized foods are medically necessary for the safe and effective management of digestive and inherited metabolic disorders that impact digestion, absorption, and metabolism of nutrients. For example:

People with the inherited metabolic disorder called phenylketonuria (PKU) cannot utilize the amino acid, phenylalanine, so must consume a phenylalanine-free liquid medical formula every day for life.

Many patients with digestive and metabolic disorders also require supplementation of specific vitamins to avoid deficiencies.

Without these specialized foods, infants, children, and adults can suffer adverse health consequences, including hospitalization, intellectual impairment, behavioral dysfunction, inadequate growth, nutrient deficiencies, and even death. Although these foods are essential for patients, they are often expensive and not uniformly reimbursed by health insurance, leaving many families with a large financial burden.

The Medical Nutrition Equity Act would provide public and private insurance coverage for medically necessary foods1 (including vitamins) for digestive and inherited metabolic disorders.

Medically necessary foods would be covered under Medicaid, CHIP, Medicare, TriCare, FEHBP, and private insurance if they are prescribed by the patients provider.

The Medical Nutrition Equity Act would ensure that public and private insurance covers medically necessary foods required to prevent severe disabilities and death so that children and adults with digestive and inherited metabolic disorders can become healthy and productive citizens.



  • Require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children's Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans to provide coverage for FORMULA and LOW PROTEIN MODIFIED FOODS for all CHILDREN and ADULTS with PKU.
  • Medically Necessary Foods for PKU are not addressed by the Affordable Care Act.

The Impact of

About 15,000 people in the United States have PKU, while 5,000 have another type of inborn error of metabolism. The average annual cost of medically necessary food for PKU is approximately $20 per day. However, care for an untreated PKU patient in residential treatment costs at least $165 per day.
  • 1 The terminology medically necessary foods is being used instead of medical foods to avoid confusion with the Orphan Drug Act (ODA) definition of medical foods. The ODA definition, which requires a product to be specifically designed to meet the distinctive nutritional requirements of a patient, is overly narrow in relation to how nutritional products are currently developed and used in the health care setting.

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