Patients and Providers for Medical Nutrition Equity Patients and Providers for Medical Nutrition Equity

PATIENTS AND PROVIDERS FOR MEDICAL NUTRITION EQUITY

These are people with Maple syrup urine disease whose lives are sustained by medical nutrition.

Their average annual cost for medical foods is $3468 per person.

Maple syrup urine disease, Pennsylvania

Jeff

Maple syrup urine disease, Pennsylvania
We purchase medical insurance from employer. Employer is self insured so not subject to the Pennsylvania Medical Foods Act. MSUD powder covered partially. Employer is self insured so not subject to the Pennsylvania Medical Foods Act. Other doctor prescribed amino acids not covered. Previous insurance management firm required year proof that our son was still...
Maple syrup urine disease, Washington

Indigo, Age 5

Maple syrup urine disease, Washington
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 upon it and cost shouldn’t be a barrier for her or anyone living with a metabolic disorder. It’s not an alternative lifestyle, her life depends on...
California, Inborn Errors of Metabolism and Conditions on the RUSP, Maple syrup urine disease

Carter, Age 5

California, Inborn Errors of Metabolism and Conditions on the RUSP, Maple syrup urine disease
California | Maple syrup urine disease | Annual cost: $1800
Our family has been fortunate enough to have very good insurance coverage through an employer which provides 90% coverage for medical foods. Out insurance covers 90% of medical foods however we have to get the providers approved by the insurance company and they have to re-approve the coverage every 6 months. It was such...
Maple syrup urine disease, Nevada

Sabastian

Maple syrup urine disease, Nevada
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 Obama Care $1200.00 per month. This does not leave me much funds left over to buy medical Nutrition food, my insurance covers the formula which is so expensive. There...