Science Policy Friday: EoE/Eos - Rare Disease, Even Rarer Insurance Coverage



This article, the first in a two part series, seeks to raise awareness of a rare disease affecting children known as eosinophilic esophagitis (EoE or Eos for short), a chronic disease that causes inflammation in the esophagus. Part two examines how a rare disease like Eos Disorders is either not covered or poorly covered by medical insurance, and recent legislation to address this problem for EoE.  A big thank you to our new science and environment intern Chelsea Mann for research and drafting this article.

Inflammation is a term regularly associated with common health complications. It is the most likely reason you experience joint pain after a morning run and the reason you miss work after developing bronchitis. While such complications may temporarily interfere with our daily lives, treatment options for inflammation are usually easily accessible and efficient. But for some people—especially children—inflammation can be a serious condition, particularly when this immune response prevents them from eating regular foods to obtain their basic nutrition.   

Imagine an inflammatory disease that closes your throat, prohibits the consumption of food, and cannot be treated with simple medications. This type of inflammation is caused by eosinophils (white blood cells) in response to allergies. White blood cells are typically helpful, but high quantities of white blood cells in areas other than the blood and intestinal tract can cause major issues. While we often take it for granted, the esophagus is a critical organ. It is the body’s digestive highway and transports food from the mouth and throat to your stomach. The inflammatory response that is triggered by an elevation of white blood cells in people with Eos disorders creates a roadblock on this digestive highway, disrupting crucial function and making it near impossible to safely consume and digest food.

Eosinophilic esophagitis largely affects infants and children. According to most medical descriptions of EoE, the symptoms include nausea, regurgitation, vomiting, abdominal pain and reflux. While rare, eosinophilic esophagitis is one of the most prevalent esophageal diseases and causes of dysphagia or difficulty swallowing, and food being impacted in the esophagus. It is a parent’s worst nightmare to have a child with the potential to choke every time he or she eats, while also being deprived of the basic nutrients he or she needs to live and thrive.  Children’s Hospital of Philadelphia’s webpage on the disease provides more detailed information about the signs and symptoms of eosinophilic esophagitis in infants and children.

There is no simple cure for eosinophilic esophagitis. The typical treatment is often costly and strenuous for young patients. Individuals with the disease must usually consume amino acid-based formulas in order to obtain sufficient nutrients for a healthful life. Amino acid-based formulas are orphan drugs regulated by the Food and Drug Administration (FDA) for rare disorders and diseases and are considered to be a “medical treatment.” Scientists have developed these formulas to provide a sustainable diet for those with EoE so that they can grow up to be healthy and strong. This formula is often fed to an infant or a child through a feeding tube delivered through the nostril and into the stomach.  As a child grows up, this tube is often replaced with a version of the formula that the child may drink directly. 

Our constituent and the driving force behind Assemblyman Benson’s bill A-389 (requiring health insurers cover certain amino acid-based elemental formulas) is a young girl from Hamilton named Maggie. She was diagnosed with eosinophilic esophagitis as an infant and began treatment at the age of two. Her treatment consisted of consuming formula through a feeding tube for over a year. The feeding therapy and support from Maggie's family has allowed her to develop into a healthy and thriving 8-year-old. These formulas, however, are not only a struggle to physically introduce into the stomach where they are needed, but according to Maggie smell and taste awful. As any parent can imagine, it is a tough battle on a good day to get a child to eat something they don’t want to, even when it is pleasing to taste and smell!

Left Picture: Maggie & her mother, Nancy, giving their testimonies in front of the Assembly Committee

Aside from these medical struggles, Maggie’s mother, Nancy, also takes on the enormous financial burden of delivering these medically essential formulas to her daughter, as well as the extra burden of lost time and money spent seeking coverage of these treatments from her insurance company.  Until recently, insurance companies have paid for her feeding therapy, but only after dealing with the extraordinary lengths that Nancy has had to go through to get them to cover the cost of her daughter’s medical needs.  Just when treatment is approved for a short duration, her insurance requires her to prove medical necessity all over again with the same level of documentation despite the fact that this is an ongoing disease.  Medical professionals have determined that Maggie’s food therapy is a medical necessity for her to live and thrive. The policy question then is, shouldn’t insurance companies cover these formulas regardless of the delivery method (feeding tube versus the less costly drinkable formula) and coordinate with individuals and medical professionals to provide coverage for their policyholders’ medical needs?  A-389 seeks to address what one hopes is a resounding yes to this question!

Next week, we will take a look at the financial logistics of amino acid based formulas and what A-389 will entail for those individuals that have the same struggles as Maggie and her mother. 

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