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.

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 ...

Zoe, Age 4

Phenylketonuria (PKU) · Tennessee
Annual cost: $4200

We adopted our beautiful daughter Zoe three months ago from China. We did extensive research on PKU and prepared ourselves the best we ...

Kayla

Oregon · Phenylketonuria (PKU)

When I moved to the West Coast by myself in 2014, I had to learn everything on my own like finding a clinic and handling coverage. I ...

Jennifer

Phenylketonuria (PKU) · Washington
Annual cost: $6000

The amount of medical debt my family has had to trudge through, during my 43 years of living with PKU, has been financially crippling. ...

Nicholas, Age 3

Michigan · Phenylketonuria (PKU)
Annual cost: $12000

Having medical foods coverage would lessen the burden of worrying about the special foods our son will need as he grows up. While we ...

Claire, Age 12

Phenylketonuria (PKU) · Utah
Annual cost: $2400

My insurance company recently denied coverage for my daughter’s formula to treat her PKU. They said she can only have formula ...

Corey, Age 26

New York · Phenylketonuria (PKU)

Turning 26 and navigating through my own insurance was a nightmare. NYS Medicaid is a blessing but not sure how long I can stay on ...

Sarah

Connecticut · Phenylketonuria (PKU)
Annual cost: $240

When our daughter was born, our two employer-provided insurances refused to cover her condition. One insurance was through the Ct. ...

Chris

Connecticut · Phenylketonuria (PKU)
Annual cost: $600

In 2017 I started working at my current employer. In January 2018 I filled out the paperwork with Cambrooke Therapeutics to have them ...

Saylah, Age 2

Kansas · Phenylketonuria (PKU)
Annual cost: $2400

My daughter has a milder form of PKU and therefore does not need as much formula to live a healthy life. However, as she gets older ...

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