People with Phenylketonuria (PKU) who rely on medical foods

Phenylketonuria (PKU) is an inherited disorder that increases the levels of a substance called phenylalanine in the blood. Phenylalanine is a building block of proteins (an amino acid) that is obtained through the diet. It is found in all proteins and in some artificial sweeteners. If PKU is not treated, phenylalanine can build up to harmful levels in the body, causing intellectual disability and other serious health problems.

Joseph

New York · Phenylketonuria (PKU)
Annual cost: $4200

I am a voting 46 year old PKU adult male who is self reliant and is a major source of income in my house hold. I have a career, build/ ...

Brittany

Maine · Phenylketonuria (PKU)

The Medical Nutrition Equity Act (MNEA) has been re-introduced in Congress. We really need to push hard to get this passed, so I am ...

Kris

California · Phenylketonuria (PKU)

Having access to low protein nutrition and food is essential to my overall health but primarily my brain and cognitive function. ...

Emeline

Maryland · Phenylketonuria (PKU)
Annual cost: $5400

Having coverage for medical nutrition would mean so much to me and my family. As of now, my family pays about $450 out-of-pocket for ...

Sarah

Connecticut · Phenylketonuria (PKU)
Annual cost: $300

At first my dad’s Connecticut Carpenters insurance refused to cover my condition so he took a job with the Milford Board of ...

Kendall

Maryland · Phenylketonuria (PKU)

My name is Kendall Temple Jr. and was born in 1966. I was one of every first people diagnosed with PKU in the state of Maryland. There ...

Kurt

Maryland · Phenylketonuria (PKU)
Annual cost: $8400

Having coverage for medical nutrition would mean I would have access to life-saving foods and formulas without ever having a lapse in ...

Elyse

Colorado · Phenylketonuria (PKU)
Annual cost: $3600

Medical nutrition coverage would mean FREEDOM. Freedom from worry and the freedom to be able to make normal life choices such as what ...

Heather

Missouri · Phenylketonuria (PKU)
Annual cost: $14400

I have phenylketonuria and am required to eat low protein foods and drink a formula supplement daily FOR LIFE. Without these items I ...