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.
T, Age 5
EOSINOPHILIC DISORDERS · FPIES · Texas
Annual cost: $8400
My son was diagnosed with Food Protein Induced Enterocolitis Syndrome when he was 11 months old. Following scopes, he was later ...
Mayes, Age 4
EOSINOPHILIC DISORDERS · Texas
Annual cost: $7200
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 ...
Gianna
FPIES · Michigan
Annual cost: $115212
Following a lengthy 30day in the ICU, with a diagnosis of Food Protein Induced Encrolitis, Gianna was prescribed the formlua Elecare. ...
Armando, Age 2
EOSINOPHILIC DISORDERS · Florida
Annual cost: $18000
My son, Armando, struggled to grow and gain weight since birth. He would vomit daily and choke on foods once they were introduced. His ...
Bryleigh, Age 11
EOSINOPHILIC DISORDERS · Virginia
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 ...
Brooks, Age 9 monhts
FPIES · Illinois
Annual cost: $600
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 ...
Ronan, Age 2
FPIES · Ohio
Annual cost: $9600
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 ...
Isaac (13) and Caleb (11)
FPIES · New Hampshire
Annual cost: $18000
Over the course of five years, our out-of-pocket expenses for medical nutrition for two children was approximately $85,000. Add to it ...
Rylan, Age 10
EOSINOPHILIC DISORDERS · Kentucky
Annual cost: $3600
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 ...
Sawyer, Age 2
EOSINOPHILIC DISORDERS · Missouri
Annual cost: $540
We spent a long time working with my son’s doctors to make insurance understand how much he needed hypoallergenic formula. He was ...
Katherine, Age 8
FPIES · Louisiana
Annual cost: $8400
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. ...
Shane
EOSINOPHILIC DISORDERS · Maryland
Annual cost: $42000
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 ...
Sebastian, Age 25
EOSINOPHILIC DISORDERS · Pennsylvania
Medicare always denying coverage, constant. Medicare is very poor. EOB’s need improvements. I have a son that needs medical ...
Lucas, age 18 months
FPIES · New Jersey
While we are fortunate that wic and insurance cover Lucas’s formula because of his medical necessity as well as my persistence ...
Jeffrey
EOSINOPHILIC DISORDERS · Minnesota
I began experiencing unusual gastrointestinal symptoms around 1990 which included severe stomach aches, bouts of diarrhea and frequent ...
Insurance won't cover my son's formula unless he's tube-fed.
Elijah, Age 7
EOSINOPHILIC DISORDERS · Texas
Annual cost: $3600
The Medical Nutrition Equity Act would mean my 7 year old son could get proper nutrition he needs. He is currently 45lbs at 7.5 years ...
Sutton, Age 4
FPIES · Texas
Annual cost: $10200
My FPIES son could only tolerate 1 food (Quinoa) for 3 years without projectile vomiting or having hospitalization level diarrhea. We ...
Eleanor, Age 7
California · FPIES
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 ...
Reynaldo
Florida · FPIES
Annual cost: $3864
My son’s food allergies were so severe, he was reacting to the food I was eating through breastfeeding. He had blood in his ...
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.
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 afforded. A.B. is a 9-year-old boy who was born with a condition called ‘jejunal atresia.’ […]
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.
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.
Justin, Age 22
Immunoglobulin E & non-Immunoglobulin E-mediated allergies to food proteins · Nebraska
Annual cost: $24000
Our 22 year old son is about to age out of coverage for his formula. He is allergic to everything, except this one formula and ...
Tessa
EOSINOPHILIC DISORDERS · Utah
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 ...
Tyler, Age 7
EOSINOPHILIC DISORDERS · North Carolina
Annual cost: $14400
Tyler began getting sick at age 4 eating normal food. We went through three large healthcare institutions in NC where we live for ...
