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
Read moreInborn Errors of Metabolism and Conditions on the RUSP
Sarah, Washington DC Nurse Practitioner
A young couple with a child with PKU in my care made the difficult decision to move to another state and region where they would be able to depend on full medical food and formula coverage and to afford the cost of just one child with PKU.
Read moreJennifer, Idaho Dietitian
My biggest frustration with the lack of coverage of medical foods is that these are NOT foods like those that we purchase from our grocer, they ARE medical treatments just like medications. The party with the condition CANNOT be healthy without them in the exact same manner that a person with diabetes type 1 cannot live without insulin.
Read moreStephanie, Florida Dietitian
The biggest frustration as a provider is knowing that many patients are not receiving the care they need to manage their conditions. The second biggest frustration is that even when an insurance “covers” medical foods, it may still not be obtainable since many ‘in-network’ distributors will not supply the needed products.
Read moreNicholas, Age 3
Having medical foods coverage would lessen the burden of worrying about the special foods our son will need as he grows up.
Read moreClaire, Age 12
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
Read moreCorey, Age 26
Turning 26 and navigating through my own insurance was a nightmare.
Read moreNorah, Age 4
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
Read moreChris
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.
Read moreSaylah, Age 2
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
Read moreMabel, 10 months
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
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Declan, Age 11
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
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Samsynn, Age 1
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
Read moreMaren, Age 6
What would having had coverage for medical nutrition meant to me/my family? It feels like an insurmountable task to even try to answer this question. Looking back, it would have meant what felt like everything. It would have meant not
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Lisa, Age 6
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.
Read moreGarrett, Age 9
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
Read moreLucy and Lucas, Ages 6 and 3
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
Read moreTyson, Age 7
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
Read moreAndrew, Age 18
My mother has worked as many as 5 jobs concurrently to maintain employer-provided insurance and has CONSTANTLY fought to keep me on a Medicaid waiver program, as they try to kick me off the program frequently. All of this and
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