My pasta costs almost 10 times more than pasta bought at a local grocery store. My medical food should be looked at as medicine, not food. It is a requirement, not a choice.
Read morePhenylketonuria (PKU)
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.
Zoey, Age 1
We would be absolutely grateful if our daughter Zoey’s Medicaid insurance would cover her medical food, not just her formula. I believe children with PKU should be able to have both formula and food to be able to be successful
Read moreEllie and Zay
Looking at this brother and sister pair, you don’t see anything besides two happy kids. Thankfully, Zay and Ellie are happy and healthy!! You would never guess that there is anything different about them, that is, until you sit
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Sarah, Age 50
I am one of the oldest patients in the PNW. My parents were told to put me in an institution but they said no and found a pediatrician that put me in the first clinical trial for treatment of PKU.
Read moreIsabelle, Age 2.5
Isabelle has Classic PKU. She is 2.5 years old and can have 3 grams of natural protein per day. For context, one 8 oz glass of milk has 8 grams of protein – 2.5 times Isabelle’s daily allowance. Isabelle relies
Read moreAiden and Aaron, Ages 5 and 3
I have two boys with Phenylketonuria, ages 5 and 3. We moved recently from California to Washington state. In California we had state insurance coverage and it covered foods like pasta, bread mix, cake mix, tortillas. In Washington insurance companies
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Joey
Even in Massachusetts, to get coverage for formula and food it is an absolute nightmare collaborating with insurance companies, pharmacies and clinics. I have fear each month that there will be an issue with something and I will not be able to get food or formula for my son because of a paperwork mistake or miscommunication between providers.
Read moreKathy, Age 55
I’m almost 55 with PKU need I say more… okay was a sample for Kuvan and Lanephex. Amount others like 1st Pku camps!
Read moreElliott, 1 month
To have Elliott’s formula and medical nutrition (low protein foods) covered by insurance would be a huge relief. The formula is extremely expensive and we haven’t even gotten to the foods yet, but I’m sure those are not cheap either.
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Laila, Age 12
Our family is very grateful that Laila’s PKU was discovered with newborn screening. Once we were able to overcome the fear and shock of her diagnosis, the next step was to learn about what we could do to keep her
Read moreAddison, Age 4
My husband and I opted to pay more out of pocket each month, for our portion of the monthly insurance premium to assure that Addison would have the best coverage offered. Even after we pay our monthly premium, we must
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Evan, Age 13
It is extremely difficult to provide my child with enough food to keep him healthy by keeping his blood phenylalanine levels at recommended levels and also keep him from being hungry.
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Audrina, Age 8
The metabolic disorder itself is such a challenge in learning and dealing with and then to have to worry about the funds to get the food, formula and medical care she needs is another level of added stress.
Read moreChristopher
I recently became ineligible for the Medicaid insurance I was on, I make just a little over the cap for income to be eligible. While I was on this insurance, my Formula supplement was covered but medical foods were not
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