By BECKY KISER
Hays Post
An Ellis mother and her 14-year-old son plan to testify Tuesday in Topeka in favor of a bill that would require private insurance companies to cover costs of a life-sustaining formula prescribed to Kansas residents with eosinophilic disorders.
Kellie Crnkovich and her son Joey support House Bill 2103 (Insurance Coverage for Amino Acid-Based Formula) introduced Jan. 19 by 79th Dist. Rep. Ed Trimmer (D-Winfield) to the House Committee on Insurance.
Amino acid-based formula, also known as an elemental formula, is a type of hypoallergenic formula made from individual amino acids, the building blocks of protein needed for growth and development. The amino acids are in the simplest form, making it easy for the body to process and digest.
Eosinophilic disorders affect less than one percent of the population, and it is estimated fewer than 500 Kansans will need the formula long term. Joey Crnkovich is one of them.
“My son needs amino acid-based formula for nutrition. He has had to enroll in virtual school for his 8th grade year. We are hoping to get him healthy enough to return to regular high school in the fall at Ellis High where he misses his friends,” Crnkovich said. “Amino acid-based formula is necessary for him to do this.”
Joey is working with Dr. Stephanie Page, director of the Eosinophilic Esophagitis Program at Children’s Mercy Hospital in Kansas City and has been on the special nutrition for three months. “He’s finally started growing again and has gained 12 pounds,” his mother reported.
“Joey was diagnosed with Eosinophilic Gastrointestinal Disease (EGD) in July after months of tests. Eosinophils (white blood cells) are attacking his GI tract. It affects his esophagus, colon, and ileum,” she explained. “It causes severe pain and many times he can’t eat at all. Because the eosinophils are attacking the food proteins in the body, we have to keep eliminating foods to try to stop his body’s reactions.”
Joey takes amino acid-based formula every day to supplement his nutrition. It’s expensive.
“A box of his formula costs $132, the cheapest from Amazon. This box has 27 eight-ounce boxes of the formula. So far he only needs a few a day as a supplement but for many children this is their only nutrition so they would drink nine or more boxes a day to meet their daily nutrition needs. Insurance does not usually cover this except in states that passed medical nutrition bills.”
Missouri, Colorado and Nebraska have passed such bills. Medicaid, Medicare and TRICARE also cover the costs.
According to the American Partnership for Eosinophilic Disorders, people with Eosinophilic Gastrointestinal Disease (EGID) are allergic or sensitive to food. The body mistakes foods as if they are parasites. In trying to protect itself, the body attacks the GI tract with white blood cells called eosinophils. When the eosinophils attack the tissue, they can cause inflammation, tissue damage, scarring and bleeding. This leads to very serious health problems, including failure to grow and thrive, uncontrollable vomiting, severe stomach and throat pain, nausea, inability to sleep, severe headaches and joint pain.
“Amino acid-based formula is the only FDA-approved treatment for EGID,” added Crnkovich.
Crnkovich knows of some parents who pay “$2,000 to $5,000 a month to get this this when insurance doesn’t cover it, causing serious financial hardship. It’s emotionally devastating.”
“They are spending more time trying to figure out how to pay for the medical nutrition that their children need rather than the energy that could be spent on taking care of their families.”
Crnkovich has sent emails to her legislators, Rep. Ken Rahjes, (R-Agra) and Sen. Rick Billinger, (R-Goodland) asking for their support on House Bill 2103.