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Mandate coverage on elemental formula for children who are medically dependent on it

This petition had 1,466 supporters


When our son was 6 months old we fed him organic rice cereal. Three hours later we found him laying in a puddle of his own vomit. I spent the next hour holding him in my arms as he vomited every few minutes. Eventually his little body was limp, cold, and motionless as we rushed him to the ER.

The next few times we fed him food, the same thing happened.  

Every time we bring a spoon to our child's mouth, we think that we are nourishing his tiny body. But instead, we have to watch our child go through horrific bouts of vomiting, hear his painful screams, and hold his lifeless body. Food is often poison to his stomach. After months of being tossed from specialist to specialist, and watching our baby boy go through a number of invasive tests, we finally got a diagnosis.

 At 9 months old, our son was diagnosed with FPIES (Food Protein-Induced Enterocolitis Syndrome). FPIES is a severe allergic reaction of the gastrointestinal system. It is not a typical allergy. A FPIES reaction results in diarrhea and/or severe vomiting 2-8 hours after ingesting a trigger food. Some reactions are so severe that children vomit until their little bodies go into a lifeless state of shock, and they need to seek immediate medical attention.

A child with FPIES can literally have a reaction to ANY food. Some children have no foods that are safe to eat. They may react to formulas and even their own mother’s breast milk!  

Thankfully, there are amino acid-based elemental formulas that consist of broken down proteins. This has been the main and only source of nutrients for many FPIES children for the first few years of their lives.

Unfortunately, this formula is extremely expensive. We currently spend $155 a week on our son’s formula. There are 17 states that have passed a law stating that amino acid-based elemental formulas need to be covered by insurance companies. The state we live in, Florida, is not one of them. Our child NEEDS this formula to grow. He NEEDS it to live. It is a medical necessity but yet the insurance companies won’t cover it.  

It is not just children with FPIES that suffer. There are a handful of other conditions, such as Eosinophilic Esophagitis, Allergic Gastroenteritis and Colitis, that require this type of formula as the only and/or main form of nutrition for a child.

The government will cover this formula for any child on welfare but they do not mandate insurance companies to cover it. 

Our insurance company will only cover this formula if we feed it to him through a feeding tube. This doesn't make sense, as it will cost much more to surgically put in a feeding tube and pay for any infections or complications that come with it. Our insurance has repeatedly refused to cover our child's medically needed formula even after multiple doctors have written letters stating that our child is medically dependent on the formula and fails to thrive without it.

It has been a very difficult and draining year for our family as we try to navigate through this disorder and find something that our child can eat. The only way to find a food that he can tolerate is by trying it. Every time we try a new food, he may react or his body may accept it. We never know until hours later.

Can you imagine having a child that literally can't eat anything? Imagine him getting violently ill every time you try to nourish him. Imagine holding your sick child in your arms time after time, knowing that he is ill because of what you fed him.  

These children spend the most crucial developmental years of their lives struggling to find food to nourish their bodies and brains. And the system fails them. Families are struggling to pay for this expensive formula.

Doing something as simple as mandating insurance companies to cover these amino-acid based, hypoallergenic formulas without feeding tubes will make a huge difference in the lives of many families today and in many years to come. 

 



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Kristine Lukanich needs your help with “U.S. Senate, Florida State Senate: Mandate coverage on elemental formula for children who are medically dependent on it”. Join Kristine and 1,465 supporters today.