Kevin

Age 13, Pennsylvania

Meet Kevin. Kevin loves swimming, music and dancing, hanging out with his family, running races, his dogs, chocolate, and all things Sesame Street. Kevin has been lobbying for disability-related issues since he was 4. So far, he’s met all the PA Governors in his lifetime. Kevin has a genetic condition called dup15q, which causes a variety of health issues including severe seizures. Last year, he underwent two brain surgeries and is one of the first kids in the world to be implanted with an RNS device.

Kevin’s mom Lisa says: "Last year, Kevin had a life saving brain surgery. His daytime seizures went from over 100 per day to 1 or fewer per day. Our insurance company would not pay for the surgery and we had to use the IRO (Independent Reviewer Option). Kevin's records were sent to an Independent case reviewer who made the determination that Aetna had to pay for the surgery. The IRO is a provision of the ACA (Affordable Care Act). Without it, insurance companies get the last say in what they cover for you. Not doctors, insurance companies. Kevin likely exhausted the standard $1mm lifetime cap before he left preschool. It's crazy to think that without the ACA, a kid like him would have to live an entire lifetime without insurance, due to a genetic condition present at birth, over which no one had any control.”   

Submitted by Lisa, Kevin’s mom.