GARDNER, Kan. — The parents of two little boys in Gardner, Kansas, say they will fight forever for their sons. They’re in a fight with their insurer over coverage of a beverage for a rare disease.
Elijah Barnett and his baby brother, Silas, appear to be perfectly healthy.
“You think oh, they’re great and they’re healthy, but in the background it’s because they’ve been on diet and that’s the only reason,” said their mother, Jessica Barnett.
The boys are on a strict low-protein diet because they were born with a disorder called PKU. Their bodies can’t break down one amino acid in protein. If they get too much protein from food, they’ll suffer brain damage. But they can also suffer mentally and physically by not getting protein. So the boys drink a formula called Bettermilk with protein which doesn’t contain the amino acid that’s bad for them.
Little Silas qualified for KanCare, state insurance that pays for the formula. Elijah’s insurer, Blue Cross and Blue Shield of Kansas City, had paid for it. But in June, Blue KC notified the family that the formula was approved in error. No more coverage. The beverage for Elijah costs close to $600 a month.
“We’ll do whatever we have to do to try and survive and keep them on diet, but it’s going to be a very hard thing for us to accomplish,” said the boys’ father, Andy Barnett.
Blue KC told the Barnetts it doesn’t cover non-prescription feedings and other supplements. The Barnetts say the boys’ doctor did prescribe it.
“They won’t cover non-prescription, but this is prescription, and it will never make sense for me. I will fight forever for my children,” said Jessica Barnett.
The couple is now working with other families of children with PKU to see if Kansas lawmakers will mandate that insurers cover the beverage. Thirty-nine states, including Missouri, have a mandate.
A Blue KC spokesperson told FOX 4 that because state regulations differ from state to state, there can be times when a procedure or prescription is covered in one state but not in another. The spokesperson says to protect privacy, Blue KC cannot talk about the specifics of this or any other case.