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Piper, 2

Michigan · Phenylketonuria (PKU)
Annual cost: $12000

I had never heard of PKU until my two-year-old granddaughter was diagnosed.  Fortunately, the state of Michigan pays for her medical ...

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 ...

Hannah

Maple syrup urine disease · New York
Annual cost: $1440

We are self-insured. We have had to change health insurances every year for the past several years because the insurance company went ...

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 ...

Les

Phenylketonuria (PKU) · Texas
Annual cost: $6000

These medical foods and formulas are not “optional” or “nice to have” for those of us with PKU andsimilar ...

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 ...

Pamela

Homocystinuria · Nevada
Annual cost: $3600

It would mean so much to have the medical nutrition equity act passed. I have a diagnosis of homocystinuria which was discovered very ...


Sabastian

Maple syrup urine disease · Nevada
Annual cost: $3000

It is really hard to have a child with a metabolic disorder. I pay over $600.00 per month for insurance coverage, It was prior to ...

Will, Age 12

Phenylketonuria (PKU) · Texas
Annual cost: $12000

This coverage would take away added stress on our family and thousands of others. I have the means to afford insurance, but it does ...


Sarah, Washington DC Nurse Practitioner

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

Staff time alone is the most major barrier. We are fortunate to have a Metabolic Clinic Manager to keep on top of all the insurance ...

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, ...

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