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FRANKFORT, Ky. (AP) — Stephanie Greenhill has dipped into her retirement account to pay for the special calorie-packed formula keeping her son alive. Her parents and in-laws also help out, since the family's insurer won't cover the expense.
Kentucky lawmakers are trying to remedy that financial hardship for the Pike County family and others with children afflicted by a disease that prevents the youngsters from eating most foods.
On Friday, the Kentucky House overwhelmingly passed a bill that calls on insurance companies to cover the special formula. A Senate companion bill also is winding its way through the General Assembly.
"This is one of those rare instances where this body has the ability and the authority to right a wrong," said House Speaker Greg Stumbo, lead sponsor of the House measure, which passed on a 92-0 vote.
Greenhill's 9-year-old son, Noah, has become the face behind the legislation. The youngster visited Kentucky's Capitol with his parents earlier in the week to promote the legislation.
Noah began showing the symptoms while an infant, but he wasn't diagnosed until age 5, when he weighed a paltry 25 pounds. That's when doctors determined that he has eosinophilic esophagitis, a chronic immune system disease that causes digestive system illness.
He now receives an amino acid-based formula four times a day through a feeding tube, at a daily cost of more than $40. Noah — a third-grader who enjoys playing baseball — now weighs 57 pounds, but his condition is a constant struggle. The hardships extend to the challenge of paying for the formula, his mother said.
"It's terrible," she said in a phone interview Friday. "I've had to let bills go to afford the formula."
Noah's father, Eddie Greenhill, is a retired firefighter, while Stephanie is a stay-at-home mom.
Noah can eat a few foods — apples, grapes, potatoes, turkey and pork, his mother said. But other foods cause severe reactions that make him terribly ill. That happened when he ate fish last October, she said.
Eddie Greenhill spoke up for the bills in testimony to lawmakers this week.
"Amino acid-based elemental formulas have made Noah better — and because they are medically necessary, insurance companies should be required to cover them," he said.
Lawmakers were told this week that as many as 200 Kentucky children have the disease.
The Senate bill is sponsored by Minority Floor Leader Ray Jones II, D-Pikeville.
Stephanie Greenhill said the response by lawmakers has been overwhelming. Her family is hoping that the momentum continues and the legislation eventually becomes state law.
"It would mean so much for our family and others that are suffering," he said.
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The House legislation is HB353. The Senate legislation is SB146.
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