Cameron Casacci needs life-saving surgery amid insurance denial

BUFFALO, N.Y. — EDITOR’S NOTE:  There is a new update to this story as of August, 12, 2025. The insurance company has reversed its decision, approving Baby Cam’s Pittsburgh surgery on August 20 after NYS Health urged reconsideration.  You can read the full updated story here.

Cameron Casacci’s medical issues happened shortly after birth on Sept. 11, 2024.

His parents, Brad and Alyssa Casacci, said he had a stroke on the left side of his brain and he now has seizures.

“Our epileptologist here in Buffalo said that Cam has what they call, medication resistant epilepsy, which means that the epilepsy is just not controlled by these medications. So he recommended a very drastic extreme surgery known as a hemispherectomy, where they go in and basically disconnect the left hemisphere of Cam’s brain from the right hemisphere of his brain in hopes of bringing him seizure freedom.”

The parents are prepared for the infant to have the risky surgery.

However, they said no specialists in this area can do it.  They have an appointment with a specialist in Rochester, but it’s weeks away.  

They have consulted and met with a specialist at UPMC in Pittsburgh who is prepared to do the surgery.

They showed 2 On Your Side denial letters to pay for the surgery from Independent Health.

“This is not a broken arm, it’s a kid’s brain,” said Brad.

Appeals have also been denied.

“The first denial that we got from our insurance actually list providers who can do the surgery. They listed Cam’s neurosurgeon here as someone who can do it. She does not do the surgery,” Alyssa said.

The surgery and other costs are expected to top $500,000.

There is a GoFundMe to assist the family.

Independent Health has released an official statement on the matter: “Federal law (HIPAA), New York State law, and our internal confidentiality policy prohibit us from disclosing any details concerning a member’s protected health information. As a Medicaid managed care plan, we are bound by federal and state compliance laws to follow coverage decisions. New York State’s Medicaid plans do not include out-of-area coverage, unless the service cannot be provided in-network,” they say.

“When such denials occur, Independent Health has identified in-network provider(s) and/or facilities(s) with the ability to provide the particular service. Independent Health provides comprehensive, quality benefits and services,” they continued. “Medicaid members have appeal rights and can also request a fair hearing if they disagree with the coverage decision. We always clearly let members know of their appeal rights.  After the member has followed the appeal processes, coverage decisions by external entities are binding.”