Remington was diagnosed with eosinophilic esophagitis as a toddler. By the time he was 3 years of age, it became clear that food was worsening his condition. By taking so many foods out of his diet, he was at risk
Read moreJames, Age 12
James DeLano is a 12-year-old boy who has lived his life with rare, chronic disease. As a young child, James was diagnosed with an eosinophilic gastrointestinal disease and inborn error of metabolism. Due to the many issues that his conditions
Read moreCaleb, Age 13
Medically necessary formula has given Caleb back his health, allowed him to continue to advance in sports and school. Not knowing if our family will have enough resources financial to sustain his needs puts stress on all of us but
Read moreBen, Age 5
Though I’m on an employer plan, we contribute another $9000 a year to cover premiums for our 5 member family. That plan has a $6000 deductible. We are approximately $15,000 in each year right of out the gate. I believe
Read moreSue, Michigan Dietitian
When patients’ mental health deteriorates because they cannot follow their diet, they often lose their job and get incredibly frustrated with the system.
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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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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.
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 moreLandyn, Age 8
Landyn has been blessed to have Medicaid as his medical costs over they years would have been impossible for our family to pay. When he was on his tube feedings the cost of the formula alone would have been prohibitive.
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 moreAlexander, Age 23
My son has eosinophilic gastritis and esophagitis. His foods are very limited and he basically lives off chicken breast and rice. Even with vitamins he is too sick and weak to hold a job. We are trying to get him
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 moreOwen, Age 2
Our journey begin in January 2018. Owen was 11 months old and went into anaphylactic shock due to peanut butter. This was just the tip of the iceberg, over the next several months he would be diagnosed with over 20
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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