Mattydale (WSYR-TV) - About 30,000 children and adults in the US have cystic fibrosis.
Locally, a Mattydale mom is fighting for care for her young son who suffers from the chronic illness.
Karee Perry’s son, Owin, was born with cystic fibrosis. The illness impacts all of his organs, but the largest impact is on the boy’s lungs.
Twice a day, 19-month-old Owin straps on a vest, which puts pressure on his lungs and helps break up the mucus so he can breathe better.
“This is a preventative thing right now, but it literally adds days to his life,” Perry said.
The family started running into more problems when their insurance company switched. Shortly after changing providers, they received a letter from Blue Cross/Blue Shield saying the vest is not medically necessary and they won't cover the service.
“The goal is to keep him as healthy as possible for as long as possible and I feel like the insurance company is telling me because my son is healthy, because I’m doing my job, that they're going to take away something that is helping him live longer. That's not fair,” Perry said.
Some parents can perform manual chest physical therapy in place of the vest, which involve hitting the child’s chest repeatedly for approximately 45 minutes.
Perry says she’s never been trained for that process. And she says the vest is a better, safer option regardless.
Right now, Owin also takes 11 medications a day, a number that will grow as he does.
“I don’t know if there is a mother on this planet, that can look at their child and not want the same chance at life as everyone else,” Perry said. “I would do everything in my power to keep him alive and I’m going to.”
NewsChannel 9 reached out to Blue Cross/Blue Shield.
The company said that while it can’t discuss specific cases, there is a formal grievance and appeal process if a customer disagrees with a coverage decision.
Perry says she is already appealing.