Tuesday, February 9, 2016

Speaker Stumbo, Sen. Jones file “Noah’s Law” to help Pike County boy with rare condition

FRANKFORT – Hoping to help a young Pike County boy with a rare medical condition, Kentucky House Speaker Greg Stumbo and state Senate Democratic Floor Leader Ray S. Jones II have filed identical bills that would extend health insurance coverage to include the treatment he and others with similar illnesses need.

The legislation would benefit Noah Greenhill, the nine-year-old boy who has been diagnosed with eosinophilic esophagitis and whose plight was featured on EKB-TV.

The condition attacks his esophagus, making it extremely difficult for him to eat any food beyond nine items doctors have found he can tolerate.  As a result, he has to administer an amino acid-based formula into a feeding tube four times a day, at a daily rate of more than $40.  His insurance does not cover that cost.

The legislation – House Bill 353 and Senate Bill 146 – would change that by including this formula among the therapeutic food that health plans are already required to cover by law for other metabolic and genetic conditions.

“After I heard about Noah, and learned about Senator Jones’ bill, I pledged to join with him and move that cause forward in the House,” Speaker Stumbo said.  “This is a sensible clarification that needs to occur.  I’m confident we can do this and have Noah’s Law on the books by the end of the legislative session in April.” 

“We would never allow an insurance company to deny insulin for a juvenile diabetic, so why would we allow an insurance company to deny amino acid-based elemental formula that is needed for these children to live,” added Jones.  “I look forward to working with Speaker Stumbo to see this become law for Noah and other children like him.”


The House and Senate legislation is based on Illinois’ model law.  According to Noah’s family, 17 other states mandate this type of coverage.