Fuquay-Varina parents desperate after insurer denies treatment for their daughter
Posted October 21, 2019 6:22 p.m. EDT
Updated October 22, 2019 6:59 a.m. EDT
Fuquay-Varina, N.C. — A Fuquay-Varina mother and father say they are desperate, trying to get treatment for their daughter who has a debilitating disease. But their insurer, Anthem Blue Cross Blue Shield, declined to cover the intravenous treatment that doctors prescribed
Jimmy and Lauren Hill first noticed symptoms in 11-year-old Claire last year – tiredness, then headaches, then vertigo.
"Previously she was happy, healthy, rarely a sick kid," Jimmy Hill said.
After two months of steroid treatments, the family sought a second opinion.
"We were at a loss, scrambling," he said.
They were referred to a pediatric rheumatologist in Charlotte, who diagnosed Claire with Hashimoto's encephalopathy, a rare disorder in which the immune system attacks the brain. Symptoms include seizures and psychosis.
Claire's dad says his daughter has been confined to her bedroom since February and suffers delusions.
"We're at a point where my daughter's symptoms are getting a lot worse," he said.
The doctor in Charlotte and a team of doctors at the Houston Children's Hospital in Texas prescribed intravenous treatment of immunoglobulin, also known as IVIG.
"Everybody reviewed pretty much all the paperwork we had," Jimmy Hill said of the doctors. "They agreed that IVIG was the next step."
It's expensive, costing in the tens of thousands of dollars. The family's insurance provider, Anthem Blue Cross Blue Shield, denied the Hills claim. Not once, Claire's dad says, but three times.
"This isn't the news you want to hear, but we can't approve your request. The review showed that what you've requested is Not Medically Necessary," the insurer wrote to the Hills.
The letter said, "There is no proof or not enough proof that it improves health."
In a statement to WRAL News, Anthem wrote, "Privigen does not currently carry an indication for Hashimoto's thyroiditis, and there is insufficient clinical evidence to support the use of IVIG. As a result, benefit coverage of Privigen was not approved. The member is entitled to pursue an additional appeal through an Independent Medical Review. Anthem has reached out to help facilitate this process."
In 2012, WRAL News covered a similar request from another family. Ellen Whittington was denied coverage for immunoglobulin injections by Blue Cross Blue Shield of North Carolina, which is separate from Anthem. After that news coverage and pressure from social media, the company agreed to pay and has since updated its policy.
Ellen's father, Brian Whittington, said she is now doing very well.
It's an outcome Jimmy Hill wants for his daughter.
"We're ready to get her healthy," he said. "We're exhausted, but we're gonna keep on pushing."