PANDAS Family granted insurance coverage after 4th attempt

NASHVILLE, Tenn. (WSMV) - After three denials of insurance coverage of a misunderstood disease, a Mt. Juliet family just learned the good news: BlueCross BlueShield has agreed to three months of coverage of an expensive transfusion, one that the family had already paid $16,000 out-of-pocket to receive.

“That’s a lot of money,” says Kristi Giacco through tears. “I cried the moment I found out!”

WSMV4 began following the Giacco family’s fight in January 2024. Their son, 10-year old Lucca, battled strep throat 15 times in 4 years. The repeated infections led to an auto-immune, auto-inflammatory disorder known as PANS or PANDAS.

The disease comes with severe symptoms often characterized by sudden and intense changes in behavior: onset of OCD, aggression, tics, hallucinations, deterioration of motor skills, and sleep troubles.

The disease occurs when the body incorrectly attacks healthy brain tissue, which triggers neurological or psychiatric symptoms. The diseases primarily affect the basal ganglia, a group of inter-connected structures in the brain tasked with regulating functions like motor skills, emotional response and procedural learning.

WATCH: How PANDAS affects a child’s brain

“I really believe that this news story is what helped [us get coverage] because why else would it finally get approved after being denied so many times,” remarks Kristi.

Lucca was initially diagnosed with ADHD and prescribed anti-depressants, but Kristi felt intuitively he had been misdiagnosed and something more serious was wrong.

In 2023, Kristi found a pediatric neurologist in Washington, D.C., who agreed to evaluate Lucca. Through Dr. Elizabeth Latimer, considered one of the few PANS specialists in the world, Lucca was then diagnosed with the strep-related counterpart to PANS, known as PANDAS.

The initial treatment plan for Lucca included taking constant antibiotics and steroids to decrease the inflammation on his brain. Lucca experienced limited improvement with the plan, which meant his doctor advised a more intense step: an infusion treatment called intravenous immune globulin, known as IVIG.

IVIG is a two-day treatment, for six hours each day, where a concentrated dose of antibodies collected from the donated blood of thousands of people was pumped into Lucca’s body, intravenously. It floods the body with antibodies to fight infection.

Lucca did his first round of IVIG in April 2023, and the result was great improvements in his focus, a decrease in his anxiety and a near-elimination in all tics. Lucca even scored in the 95th percentile in August 2023 for a statewide reading exam – at the start of his 4th grade year.

He has now waited a year for his next infusion, while Kristi said he needed it six months ago but the fight with insurance has held it up.

Kristi was turned down for coverage three times prior to this.

“I really didn’t think we would get approved,” says Kristi.

It began with a denial for prior authorization, two denied appeals, and then a final medical appeal which enlisted the help of an unaffiliated doctor who would review the treatment and make a decision on behalf of the insurance company.

Kristi is still awaiting details on how many treatments Lucca will be able to receive over the course of the next three months. The company has notified Lucca’s doctor and explained to Kristi that this paves the way for more approvals of infusion treatments in the future.

The good news of the insurance coverage couldn’t come soon enough. Kristi was dealt a blow on March 14, 2024, when she learned the legislative bills she helped create that would mandate insurance coverage of PANDAS and PANS in Tennessee were effectively killed in the Senate.

Kristi still intends to work this fall to bring the bills back in the 2025 legislative session. She’s still holding onto the relief that insurance will cover Lucca’s next treatment.

“If felt so good,” says Kristi. “It’s like the weight of the world just left my shoulders!”

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