Phenylketonuria (PKU)

Kayla

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 had insurance companies outright deny me coverage for my formula so much that

Jennifer

pkunews

The amount of medical debt my family has had to trudge through, during my 43 years of living with PKU, has been financially crippling. I am grateful for medical foods, they allow me to be a valuable citizen, and member

Abbey, Age 8

pkunews

Abbey is such an awesome person. She has a heart of gold, great listener and works so hard at everything she does. She loves to dance in her free time. We have recently had to cut down on her lessons

Nicholas, Age 3

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

My insurance company recently denied coverage for my daughter’s formula to treat her PKU. They said she can only have formula coverage for one year of her lifetime. Seriously. Only ONE YEAR! Well, she has PKU, which is a genetic

Corey, Age 26

Turning 26 and navigating through my own insurance was a nightmare.

Sarah

When our daughter was born, our two employer-provided insurances refused to cover her condition.

When Norah was just 5 days old, we received a call from our clinic saying that Norah had something called PKU. At the time, we had never heard about PKU and did not know what the future would hold for

Chris

I stopped taking the formula because it’s $2000/month out of pocket and I couldn’t afford that. Later that year I visited my clinic, where I found that my vitamin levels were critically low because I didn’t have access to the formula. I essentially went the whole year without any kind of formula or protein supplement.

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 her body will need more natural protein, at which point she will need more

Mabel was diagnosed with the metabolic disorder, Phenylketonuria (PKU) at birth. She is thriving with the help of her metabolic formula and a very low protein diet. Without a very low protein diet (right now she is allowed a half

My name is Breanna and I am 23 years old. Luckily, I am still on my parents insurance and plan on staying on it until I can no longer. We are lucky that my father gets Blue Cross Blue Shield

Venetia

pkunews

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 meet because the food costs way to much for me to

Declan, Age 11

pkunews

When I was eligible for the Affordable Care Act, I “made too much money” since child support is added in for income for DE Healthy Choice Option through Medicaid. Therefore, I was informed that it would be at least $1600

I got pregnant while I was in high school and never finished. I was alone in my pregnancy and until he was 3 months old. I don’t make a lot for my two jobs and I have another son. He

I’m a 30, soon to be 31 year old female who was diagnosed with PKU at 1 month old and currently reside in New Jersey. Growing up, formula was always covered by my mother’s insurance since that’s how it is

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. Once we brought Lisa home to Indiana we had no coverage for food.

When Garrett was born at 9 lbs 4 oz, we could not have been more thrilled to have a such a fat, happy baby! When we received the call two weeks later that he tested positive for PKU, we were

I have three children, my six-year-old twin daughters Lucy and Lily and my three-year-old son Lucas. Lucy and Lucas were diagnosed at birth with PKU, a rare, inherited metabolic disorder for which there is currently no cure. Their livers are

It’s very important having coverage for medical nutrition. We could not afford to pay out of pocket and have no private insurance. If, We didn’t have the state of Louisiana and Medicaid our child would be severely permanently brain damaged

My insurance as a NYC public school teacher covers Emily’s medical formula only. But it is never easy. Every year there is a question if they will continue to cover it. They do not cover any medical food ever. I

This coverage would take away added stress on our family and thousands of others. I have the means to afford insurance, but it does not help with procuring formula. Why do we pay so much for so little?? Why have

I have a medical condition called Phenylketonuria (PKU). PKU is an inherited metabolic disorder where my body cannot break down phenylalanine, an amino acid found in protein. Therefore I live on a very restricted low protein diet consisting of mainly

Medical coverage for our family will mean less time fighting the insurance for coverage. They decide when and how they are going to cover it on a month by month basis. She is on one required medical food but uses two

Elliot was diagnosed with PKU at 6 days old. He is a happy, energetic and loving 2 year old. We are fortunate enough to have formula currently provided to us by the state, although this is not guaranteed to continue

Phenylketonuria (PKU)

Kayla

Jennifer

Abbey, Age 8

Nicholas, Age 3

Claire, Age 12

Corey, Age 26

Sarah

Norah, Age 4

Chris

Saylah, Age 2

Mabel, 10 months

Breanna

Venetia

Declan, Age 11

Samsynn, Age 1

Kristy

Lisa, Age 6

Garrett, Age 9

Lucy and Lucas, Ages 6 and 3

Tyson, Age 7

Emily, 11

Will, Age 12

Kelsey, Age 25

Adysen, Age 11

Elliot, Age 2