People with Maple syrup urine disease who rely on medical foods

Maple syrup urine disease (MSUD) is an inherited disorder in which the body is unable to process certain protein building blocks (amino acids) properly. The condition gets its name from the distinctive sweet odor of affected infants’ urine. It is also characterized by poor feeding, vomiting, lack of energy (lethargy), abnormal movements, and delayed development. If untreated, maple syrup urine disease can lead to seizures, coma, and death.

Nia, Age 3

Maple syrup urine disease · Ohio
Annual cost: $3600

Insurance covers my daughters medical formula but doesn’t cover her medical foods. If my daughters medical foods were covered it ...

Jeff

Maple syrup urine disease · Pennsylvania
Annual cost: $2700

We purchase medical insurance from employer. Employer is self insured so not subject to the Pennsylvania Medical Foods Act. MSUD ...

Hannah

Maple syrup urine disease · New York
Annual cost: $1440

We are self-insured. We have had to change health insurances every year for the past several years because the insurance company went ...

Indigo, Age 5

Maple syrup urine disease · Washington
Annual cost: $4800

It scares me to think about our daughter not having access to her medical formula. This isn’t an option for her, her life depends ...

Sabastian

Maple syrup urine disease · Nevada
Annual cost: $3000

It is really hard to have a child with a metabolic disorder. I pay over $600.00 per month for insurance coverage, It was prior to ...

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.