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.

Kacie

New York · Phenylketonuria (PKU)
Annual cost: $5880

My kids have been on their diet their entire lives (we have three kids with PKU) and now at a crucial time (maternal age), she can not ...

Liza

Oregon · Phenylketonuria (PKU)
Annual cost: $8400

Because our employer plan is self-funded, and we have no other plan options through the company, I have no coverage for even formula ...

Will, Age 14

Phenylketonuria (PKU) · Washington
Annual cost: $4200

I am 14. I need my formula to live and grow. I am an athlete and a good student. My formula and low protein foods are critical for my ...

Hailey, Age 1

Iowa · Phenylketonuria (PKU)
Annual cost: $7200

Coverage would give our family peace of mind. My youngest daughter, Hailey, has PKU. Everyday, she is required to drink a very ...

Jessica

Phenylketonuria (PKU) · Tennessee
Annual cost: $6000

If there were no issues with getting medical formulas and medical foods, the stress of worrying would go away. As a child, we had no ...

Amber

Indiana · Phenylketonuria (PKU)
Annual cost: $4980

I was born in 1990 with PKU. My parents were told to expect severe disabilities. We need these medical foods for our everyday lives. ...

Saif, Age 5

Florida · Phenylketonuria (PKU)
Annual cost: $6000

Hi, I am only 5 years old now and my parents struggle to provide the right food for me for my special diet. Coverage would mean now ...

Clayton, Age 4

Ohio · Phenylketonuria (PKU)
Annual cost: $5040

Having the medical nutrition covered by our insurance would grealty imporve the options and the cost of the food that Clayton would ...

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 ...

Ellis, Age 12

Phenylketonuria (PKU) · Tennessee
Annual cost: $4200

We have been fighting insurance and coverage since Ellis was diagnosed. It is very time consummating and difficult to work with ...

Sarah

Phenylketonuria (PKU) · Tennessee
Annual cost: $37800

My name is Sarah. Im 24 and I have classical PKU which means my enzyme in my liver has a hard time fuctioning breaking down ...

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 ...

Nicole

Michigan · Phenylketonuria (PKU)
Annual cost: $4800

Coverage for medical nutrition for myself would mean freedom from worry and security that I will continue to be my best self. Without ...

Hudson

Phenylketonuria (PKU) · Texas
Annual cost: $9600

While we are very fortunate to have insurance that can help us with the costs, there is still a great financial strain associated with ...

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