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Angelica

Kansas · Phenylketonuria (PKU)
Annual cost: $12000

Stepping out of the Blue – (Bear with me for a moment, this will all make sense in the end) Where it all began: I located a new ...

Emalynn

Phenylketonuria (PKU) · Virginia
Annual cost: $5040

When Emalynn was born and diagnosed with PKU, we had no idea what to expect or think. Luckily we were blessed with a bright happy 3 ...

Vincent

Florida · Tyrosinemia
Annual cost: $3600

The average child eats what everyone else eats and thrives based upon a combination of nutrition, exercise and genetics. While we can ...

Emily, 11

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

My insurance as a NYC public school teacher covers Emily’s medical formula only. But it is never easy. Every year there is a ...

Draegen, Age 18

Phenylketonuria (PKU) · Texas
Annual cost: $6000

When my son, Draegen, was younger, he was on Medicaid. It covered his formula, but only a very specific kind. He ended up burnt out on ...

Saylah, Age 2

Kansas · Phenylketonuria (PKU)
Annual cost: $2400

My daughter has a milder form of PKU and therefore does not need as much formula to live a healthy life. However, as she gets older ...

Ashlynn

California · Phenylketonuria (PKU)
Annual cost: $6996

My insurance provides coverage of Ashlynn’s PKU metabolic formula, ONLY after we have met her deductible. They cover NO medical ...

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 ...

Jennifer

Maryland · Phenylketonuria (PKU)
Annual cost: $24000

I am a subscribed member to the largest employer sponsored health insurance program in the country, the Federal Employee Health ...

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 ...


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 ...

Zoey

Argininosuccinic aciduria · Texas
Annual cost: $10200

For now while she is a baby our insurance covers some of her formula, but none of her medically necessary supplements and none of the ...

Max, Age 17 months

Colorado · FPIES
Annual cost: $3240

My son, Max was diagnosed with FPIES after I stopped breastfeeding and he started on milk-based formula and we started introducing ...

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 ...


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 ...

Adysen, Age 11

Phenylketonuria (PKU) · Texas
Annual cost: $3600

Medical coverage for our family will mean less time fighting the insurance for coverage. They decide when and how they are going to ...

Hudson

Phenylketonuria (PKU) · Texas
Annual cost: $9600

While we are very fortunate to have insurance that can help us with the costs, there is still a great financial strain associated with ...

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