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

Venetia

Louisiana · Phenylketonuria (PKU)
Annual cost: $6000

I have to be on Medicaid because I can not afford to get insurance on my own or thru my employer and it is very difficult to make ends ...

Joanna

Homocystinuria · Oregon

I was diagnosed with Homocystineuria at age 3, (1974) when I rubbed Trisodium Phosphate (paint Thinner) into my eyes. They originally ...

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 ...

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