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Seton, Age 3

FPIES · Wisconsin
Annual cost: $3600

Our son was diagnosed with FPIES at around 7 months of age. He is intolerant or allergic to upwards of 40 foods. Even at the current ...


Justin, Age 22

Immunoglobulin E & non-Im­mu­no­glob­u­lin E-mediated allergies to food proteins · Nebraska
Annual cost: $24000

Our 22 year old son is about to age out of coverage for his formula. He is allergic to everything, except this one formula and ...


Evan, Age 8

Florida · Maple syrup urine disease

Evan was born with MSUD and we were lucky that TRICARE covered his formula and supplements until his transplant. At the time, they did ...


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 ...

Krew, Age 3

Phenylketonuria (PKU) · Utah

When Krew turns 6 and is no longer covered by the state metabolic program, we will have to seriously consider moving to a state with ...


Jane, Age 7

CROHN'S · Illinois
Annual cost: $3960

Jane is a happy and energetic 7-year-old child who lives with her parents and two siblings in Chicago, IL. She was diagnosed with ...

Sasha, Age 11

Florida · Tyrosinemia
Annual cost: $6000

My daughter was diagnosed with a genetic inborn error of protein metabolism at 15 months of age. Since that time, our daily life has ...


Gian, Age 2

North Carolina · Phenylketonuria (PKU)
Annual cost: $4800

I am currently a foster mom to a 2 year old with PKU. We live in the state of NC where medical food is not covered. His food is very ...

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 ...

Brandon

Phenylketonuria (PKU) · Virginia
Annual cost: $8400

If Brandon was able to get his medical food covered we would take advantage of ordering from Cambrooke foods company more often. His ...

Jalen, Age 5

Ohio · Phenylketonuria (PKU)
Annual cost: $3600

My state gives us formula covered which is the biggest blessing but my daughter is just now getting ready to start foods. I am a ...

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 ...


Stephanie, Florida Dietitian

Florida · Inborn Errors of Metabolism and Conditions on the RUSP · Provider Stories

Coverage of medical foods is a large part of my practice in both my time-effort and my care recommendations for patients. For every ...

Zoey, Age 1

Ohio · Phenylketonuria (PKU)
Annual cost: $3600

We would be absolutely grateful if our daughter Zoey’s Medicaid insurance would cover her medical food, not just her formula. I ...

Nicole

Michigan · Phenylketonuria (PKU)
Annual cost: $4800

Coverage for medical nutrition for myself would mean freedom from worry and security that I will continue to be my best self. Without ...


New York Teen, 17

New York · Phenylketonuria (PKU)
Annual cost: $7200

The cost of food and formula limits many things besides medical foods themselves. Because of the high cost of formula and food, ...

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 ...