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
Read moreAuthor: pkunews
Ashley, Utah Metabolic Nurse Practitioner
Our clinic’s desire to bring the best possible care and outcomes to our patients is directly related to their ability to get necessary medical foods. Many who are not able to get medical foods are not able to follow their restricted diets, leading to poor outcomes and disease associated morbidities.
Read moreAbbey, Age 8
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 moreSarah, 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.
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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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The Smiths
Our family is unique, in that I have PKU as well as our four adopted sons. With no guarantee of insurance coverage, I fear that my children will one day be forced into a situation similar to that they were
Read moreCanaan, Age 2
Canaan is a thriving, active 2-year-old boy with a rare metabolic condition called VLCAD. He lives with his parents in Georgia. He was picked up on the Expanded Newborn Screening at 6 days old and has done extremely well due
Read moreClaire, Age 8
I want to introduce you to my eight-year-old daughter, Claire. At first glance Claire appears to be a normal 2nd grader. She loves playing soccer, gymnastics, and playing with her brother and sister. She’s silly and funny and just a
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
Read moreChristopher, Age 9
Christopher is a thriving, active 9 year old boy with a rare metabolic condition called LCHADD. He lives with his parents in Atlanta. He was the first baby with LCHADD to be picked up on the Expanded Newborn Screening in
Read moreJane, Age 7
Jane’s formula cost out of pocket for EEN was approximately $300 per month. Her team of health care providers attempted to obtain insurance coverage but was denied even after appeals were attempted.
Read moreDiego, Age 9
Diego is a happy and thriving 9-year-old boy from Chicago, IL with a history of intestinal atresia. This means that part of his intestine did not develop before he was born. He was on total parenteral nutrition (TPN), nutrition through
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