FRANKFORT — A pair of bills that would ensure health coverage of amino-acid-based formulas consumed by those suffering from eosinophilic disorders unanimously cleared House and Senate committees on Wednesday.
Senate Bill 146 and House Bill 353 emerged this year in response to a 9-year-old Pike County boy named Noah Greenhill, who suffers eosinophilic esophagitis and is the namesake of the bill called “Noah’s Law.”
Noah suffers eosinophilic esophagitis, which affects his esophagus, and had for years suffered reflux, nausea, rashes and intense headaches.
Eddie Greenhill, Noah’s father and a retired firefighter says Anthem would not cover the amino-acid-based formula Noah eats four times a day through a feeding tube because he did not suffer from a metabolic inborn error.
“It’s difficult for me to put into words what our family has gone through,” Greenhill told lawmakers on the Senate Health and Welfare Committee.
Senate Minority Floor Leader Ray Jones, D-Pikeville, said the $42-per-day formula “a significant financial burden” on Greenhill and his wife.
“The way I look at this is if we had a juvenile diabetic, we would never sit by and let an insurance company deny insulin,” said Jones, sponsor of SB 146. “We know that children who have juvenile diabetes many times are insulin dependent. They can’t live without that medication.
“The simple fact of the matter is Noah can’t survive without the supplemental nutrition from the feeding tube, and it was appalling to me that the insurance companies would deny this coverage.”
Eddie Greenhill said his son’s health has improved considerably since he was diagnosed with eosinophilic esophagitis at age 5 and began taking formula for much of his nutrition, calling that “the only reason he has improved.”
Noah had suffered from acid reflux, nausea, rashes and intense headaches, and he weighed about 25 pounds and started losing his hair to malnutrition at the time of his diagnosis, Greenhill said.
“And now he is feeling better and improving day-by-day,” Greenhill said. “He has gained a total of 31 pounds since having the G-tube placement, and he gets 1,290 calories per day of EleCare Junior, which is an amino-acid-based formula.”
Sen. Ralph Alvarado agreed that insurance companies should cover such amino-acid formulas, saying that about 200 children would benefit.
“I’ve been having discussions for the last several weeks with a lot of our insurance carriers, not only Anthem but Humana and several of the others, about this very issue because Noah has a G-tube but he’s being denied,” said Alvarado, R-Winchester.
HB 353, sponsored by House Speaker Greg Stumbo, cleared the House Banking and Insurance Committee on a 26-0 vote.