People with Inborn Errors of Metabolism and Conditions on the RUSP who rely on medical foods

Lisa, Age 6

Indiana · Phenylketonuria (PKU)
Annual cost: $3000

We adopted Lisa last year. Prior to that she was in Florida. Due to the low amount covered in Florida Lisa was on a very limited diet. ...

Andrew, Age 18

Texas · Tyrosinemia
Annual cost: $9600

My mother has worked as many as 5 jobs concurrently to maintain employer-provided insurance and has CONSTANTLY fought to keep me on a ...

Joseph

Homocystinuria · Illinois
Annual cost: $4800

Better coverage for my son would alleviate the concerns about not being able to afford the medicine he needs . Insurance info: Our ...

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 ...

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 ...

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 ...

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 ...

Mason, Age 2

Iowa · Phenylketonuria (PKU)
Annual cost: $12000

Mason is our second child and our only with PKU. Like many others we had never heard of PKU until our son was diagnosed through the ...

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 ...

Emily, Age 18

Ohio · Phenylketonuria (PKU)
Annual cost: $2400

My name is Emily and I am 18 years old with Phenylketonuria. I would have to admit that sticking to a strict diet of 256 Phe a day is ...

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 ...

Andrea

Phenylketonuria (PKU) · Texas
Annual cost: $10800

I am a new mom and PKU adult, I rely on my medical food to provide myself and my son the necessary nutrition for everyday life. All ...

Owen

Phenylketonuria (PKU) · Utah
Annual cost: $36000

Medical nutrition coverage would make an enormous difference to our entire family. We spent years in school to provide a good living ...

Joe

Georgia · Phenylketonuria (PKU)
Annual cost: $2400

When Joe was 3 weeks old, coverage of his PKU medical formula was denied by our employer provided insurance. We couldn’t believe ...

Millie

Alabama · Phenylketonuria (PKU)
Annual cost: $9600

Because of my early and consistent nutritional treatment, I developed normally and graduated high school and then college. I currently ...

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