Support the Medical Nutrition Equity Act

Declan

My son is currently ten years old. When he was first born, his father’s health insurance through work wouldn’t cover this ...

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 ...

Deckard, Age 1

California · Phenylketonuria (PKU)
Annual cost: $6000

My son has classic PKU and his food options are very limited. We rely heavily on medical foods to fulfill his dietary needs. It is a ...

Lucy and Lucas, Ages 6 and 3

Colorado · Phenylketonuria (PKU)
Annual cost: $6000

I have three children, my six-year-old twin daughters Lucy and Lily and my three-year-old son Lucas. Lucy and Lucas were diagnosed at ...

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 ...

Abbey, Age 8

Connecticut · Phenylketonuria (PKU)
Annual cost: $9600

Abbey is such an awesome person. She has a heart of gold, great listener and works so hard at everything she does. She loves to dance ...

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 ...

Leo, Age 2

Illinois · Immunoglobulin E & non-Immunoglobulin E-mediated allergies to food proteins
Annual cost: $9216

My son began drinking Neocate junior at 12 months. It was not covered by our insurance. All formula is excluded from out plan because ...

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 ...

Lyndsee, Age 13

EOSINOPHILIC DISORDERS · North Carolina
Annual cost: $20400

My daughter, Lyndsee, was diagnosed in January 2016 with a rare disease, eosinophilic esophagitis. Therefore, she has to live on a ...

I am one of the oldest patients in the PNW. My parents were told to put me in an institution but they said no and found a pediatrician that put me in the first clinical trial for treatment of PKU.

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 ...

The biggest frustration as a provider is knowing that many patients are not receiving the care they need to manage their conditions. The second biggest frustration is that even when an insurance “covers” medical foods, it may still not be obtainable since many ‘in-network’ distributors will not supply the needed products.