T, Age 5

By the time my son was properly diagnosed, he was extremely sick and we were relieved to find an elemental formula that could provide calories and nutrition he so desperately needed. However, we were stunned by the cost on top of already steep medical bills. The stress of feeding him was enormous.

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Mayes, Age 4

Mayes was diagnosed with EoE and EC at the age of 15 months old, after a long and painful process of seeking a diagnosis. He was labeled as failure to thrive, experienced daily pain, and yet, lived each day with

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Gianna

Following a lengthy 30day in the ICU, with a diagnosis of Food Protein Induced Encrolitis, Gianna was prescribed the formlua Elecare. This came at a substantial cost for her family.

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Armando, Age 2

My son, Armando, struggled to grow and gain weight since birth. He would vomit daily and choke on foods once they were introduced. His first endoscopy was at one year old and confirmed an EoE diagnosis through biopsies. He relies

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Bryleigh, Age 11

My husband and I had to declare bankruptcy this past year because the medical bills and formula were so costly. Our former HMO did not cover her medically necessary formula at a cost to us of $1,500 per month just

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Brooks, Age 9 monhts

My son was hospitalized at 7 weeks old due to a reaction. At the time it was determined the common cold sent him into near shock. He was also diagnosed with a cows milk protein and soy protein allergy, then

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Ronan, Age 2

My 2 year old son Ronan has FPIES. He was born healthy but quickly lost to much weight within 2 days after being born and was failure to thrive for the first month of his life. Once I realized at

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Isaac (13) and Caleb (11)

Over the course of five years, our out-of-pocket expenses for medical nutrition for two children was approximately $85,000. Add to it the higher cost of specialty food that they had to eat because it was medically necessary due to ingredient

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Rylan, Age 10

Being able to access medical formula is absolutely necessary for my family. My 10 year old son gets 1/3 of his nutrition from Neocate Splash at the moment. We originally tried the top six elimination diet but unfortunately my son’s

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Sawyer, Age 2

We spent a long time working with my son’s doctors to make insurance understand how much he needed hypoallergenic formula. He was officially diagnosed failure to thrive at 2 months. He was diagnosed with significant GERD at 4 months. He

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Katherine, Age 8

Katherine was only 2 months old when we knew something wasn’t right. It took us 8 more months to figure out what was going on. No baby formulas would work for her. Not regular formula, not soy formula, not even

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Shane

I have been on medical formula for my entire life. I am coming up on my 21st birthday and still have only been able to conquer one microwaved potato a day. My doctors tell me I’ll be formula relied for

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Sebastian, Age 25

Medicare always denying coverage, constant. Medicare is very poor. EOB’s need improvements. I have a son that needs medical nutrition and without it he would have passed away years ago. Medicare always denying coverage, constant. Medicare is very poor. EOB’s

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Lucas, age 18 months

While we are fortunate that wic and insurance cover Lucas’s formula because of his medical necessity as well as my persistence with insurance and Drs filing out the right things, etc, many families have a lot of trouble finding help

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Jeffrey

I began experiencing unusual gastrointestinal symptoms around 1990 which included severe stomach aches, bouts of diarrhea and frequent vomiting. It took six years of going from doctor to doctor until I was given the diagnosis of what was in 1996

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Sutton, Age 4

My FPIES son could only tolerate 1 food (Quinoa) for 3 years without projectile vomiting or having hospitalization level diarrhea. We are burned out trying to get elemental formula covered. We need uniformity on how to ensure children get the

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Eleanor, Age 7

Nora was born tox positive to several drugs and social services moved her to my home to be with her bio sibling for adoption. She has had severe GERD and food allergies from birth. She continues to have Failure to

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Reynaldo

My son’s food allergies were so severe, he was reacting to the food I was eating through breastfeeding. He had blood in his stool for several months and stopped gaining weight until he was diagnosed and prescribed an elemental medical

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Katherine, RD

As a nutrition expert, it should be up to me, the family and the healthcare team to decide on how best to treat these children and if nutrition is the ideal treatment, then it should be included as part of the child’s covered treatments. It is frustrating to have to delay or change care if nutrition therapy is not covered. This can worsen illness and also cause undue stress and harm to the child and their family.

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Tyler, MD from Idaho

I am a pediatric gastroenterologist and treat children with a variety of digestive conditions that require medical nutrition. I often see patients whose digestive conditions mandate that they be on special diets or supplements and yet these diets cannot be

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Caroline, RD

As a provider, I know what is best for these patients and when covered, the results (i.e. improved absorption, reduced eosinophils, improved growth and weight gain) are nothing short of incredible.

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Justin, Age 22

My husband has been trapped at that job his entire career because of the formula coverage for our son, that we can’t afford to walk away from. We have 3.5 years before he ages out of coverage. It is $24,000/yr, for life. The one formula that works for him is not covered by medicaid in our state. We are almost retirement age and plan to work as long as we can to pay for formula.

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Tessa

When I learned that Medicaid might not pay for my formula and supplies, I was fearful. It would be unaffordable to me to live while paying $3,000/month on medical food. Three of my gastroentelogical conditions are Eosinophilic esophagitis, gastropoeresis, and

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Tyler, Age 7

Tyler began getting sick at age 4 eating normal food. We went through three large healthcare institutions in NC where we live for help. After 1 year of illness, our second medical institution finally scoped the esophagus to find EoE.

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The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.