Corey, Age 26

New York · Phenylketonuria (PKU)

Turning 26 and navigating through my own insurance was a nightmare. NYS Medicaid is a blessing but not sure how long I can stay on ...

The Smiths

Arizona · Phenylketonuria (PKU)
Annual cost: $12000

Our family is unique, in that I have PKU as well as our four adopted sons. With no guarantee of insurance coverage, I fear that my ...


John

Phenylketonuria (PKU) · Texas

I have avoided purchasing the medical food I needed because we can’t afford the food. I make do with limiting myself to what I can ...

Saif, Age 5

Florida · Phenylketonuria (PKU)
Annual cost: $6000

Hi, I am only 5 years old now and my parents struggle to provide the right food for me for my special diet. Coverage would mean now ...

Tyler

Massachusetts · Phenylketonuria (PKU)
Annual cost: $1020

Insurance covers formula (so many cans a month) and also covers up to $5000 of food during the fiscal year July-April. If during the ...

Chelsie

Phenylketonuria (PKU) · Utah
Annual cost: $24000

Coverage for medical nutrition would be a huge blessing to me and my family, and also many other individuals with PKU especially ...

Hailey

Iowa · Phenylketonuria (PKU)
Annual cost: $12000

Meet Hailey…our second child and first PKUer. We thought having one child was expensive but having another with PKU is an ...


Sarah

FPIES · Georgia

Sarah, who lives near Atlanta, GA, was a healthy baby, born full term to a mom who had a normal and healthy pregnancy. She was ...


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 ...


Liam, Age 1

Massachusetts · Phenylketonuria (PKU)
Annual cost: $3600

Right now my husband and I are financially stable and we can afford the almost $100 per month we spend on medical formula and the ...

Shane

EOSINOPHILIC DISORDERS · Maryland
Annual cost: $42000

I have been on medical formula for my entire life. I am coming up on my 21st birthday and still have only been able to conquer one ...

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