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.

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 ...

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 ...

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. ...

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 ...

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 ...

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