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Isabel

New Jersey · Phenylketonuria (PKU)
Annual cost: $3600

I have two daughters. Only the younger one has PKU. We struggle to find foods that Isabel can eat. Medical foods are incredibly ...

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 ...


Audrina, Age 8

North Carolina · Phenylketonuria (PKU)

My daughter was diagnosed with PKU at one week old. The moment that doctor called us it changed our lives forever. The metabolic ...

Anthony, 1

Phenylketonuria (PKU) · Texas
Annual cost: $9000

Earlier this year we took custody of our grandson Anthony. He was diagnosed after birth with PKU. He has lived with us since birth, ...

A. Jay

EOSINOPHILIC DISORDERS · Texas
Annual cost: $6000

It would end the never ending anxiety of worrying about whether I can feed my son who has Eosinophilic esophagitis. My insurance will ...


Joey

Massachusetts · Phenylketonuria (PKU)
Annual cost: $12000

In Massachusetts we are fortunate to have a mass mandate for formula and up to $5000 dollars coverage for medical food. From what it ...


Sarah, Age 50

Phenylketonuria (PKU) · Washington
Annual cost: $14400

Hello, I am a 50 year old Phenylketonuria patient at the UW Medical Center. I am one of the oldest patients in the PNW. My parents ...

Claire, Age 12

Phenylketonuria (PKU) · Utah
Annual cost: $2400

My insurance company recently denied coverage for my daughter’s formula to treat her PKU. They said she can only have formula ...

Jessica

Phenylketonuria (PKU) · Tennessee
Annual cost: $6000

If there were no issues with getting medical formulas and medical foods, the stress of worrying would go away. As a child, we had no ...

Danae

Homocystinuria · Illinois
Annual cost: $18000

Homocystinuria comes with the risk of heart attacks and strokes when not on diet. In college it was impossible to afford follow the ...

Allen

Michigan · Phenylketonuria (PKU)
Annual cost: $4980

I will begin with saying there are others that are in far greater need of medical nutrition coverage than myself. I have been brought ...

Sarah

Phenylketonuria (PKU) · Tennessee
Annual cost: $37800

My name is Sarah. Im 24 and I have classical PKU which means my enzyme in my liver has a hard time fuctioning breaking down ...

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