‘I wish I knew why;’ Mom reacts to TN Senate killing bills that helped her son
In less than four minutes, the committee voted to move both bills to the General Subcommittee, which indicates there will be no movement forward for the rest of the legislative session.
NASHVILLE, Tenn. (WSMV) - Two bills that would have required health insurance coverage of the diseases known as ‘PANDAS’ and ‘PANS’ were effectively killed Wednesday.
The Senate Commerce and Labor Committee rearranged its calendar to address SB2401 and SB2402 earlier than expected. One bill mandated coverage by private insurance companies while the other required the same coverage by TennCare.
In less than four minutes, the committee voted to move both bills to the General Subcommittee, which indicates there will be no movement forward for the rest of the legislative session.
“I’m incredibly disappointed,” says Kristi Giacco, the Mt. Juliet mom who was the force behind the creation of these bills. “I literally felt the crushed feeling in my gut. I just wish I knew why.”
The Giacco’s have spent more than $30,000 out-of-pocket to pay for a transfusion treatment for her 10-year-old son Lucca, who was diagnosed with PANDAS. It’s an acronym for “Pediatric Acute Onset Neuropsychiatric Syndrome Associated with Strep. Lucca had 15 infections in four years which led to an infection in his brain.
PANS and PANDAS come with severe symptoms that are usually characterized by sudden and intense changes in behavior: onset of OCD, aggression, tics, hallucinations, deterioration of motor skills, and sleep troubles.
The initial treatment plan for Lucca included taking constant antibiotics and steroids to decrease the inflammation in 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.
After multiple denials of insurance coverage, the family is currently waiting for a final review by a doctor not affiliated with their insurance company who will instruct her plan on whether to pay for Lucca’s treatment.
“If the answer is no, then I’m going to book his infusion in Washington D.C. and pay the $16,00 because I have no other choice,” says Kristi.
In the recording of the Senate hearing, Sen. Richard Briggs (R-Knoxville) - who is also the Senate sponsor on the bills - says to fellow members “You know we don’t put very many mandates on the insurance companies.”
“So I really appreciate him bringing this to the legislature’s attention. It’s something we probably need to talk about in the future,” added Sen. Bo Watson (R-Hixson).
The two bills were created by Rep. Susan Lynn in an effort to help families pay for the treatment of diseases that are often misdiagnosed and misunderstood. Rep. Lynn did not want to comment on this story.
“I am not giving up this easily. I didn’t start this thinking it was gonna be this easy. I’m just disappointed because I think timing wasn’t on our side. but it just means not right now.”
Understanding PANS and PANDAS
PANS and PANDAS are a group of auto-immune, auto-inflammatory disorders that affect a child’s central nervous system. 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
Repeated exposure to diseases, such as strep, causes the body to launch an immune response against the infection. The body produces antibodies, but in certain people, it leads to the production of abnormal antibodies known as auto-antibodies which attack the person’s own healthy brain cells.
It’s not fully understood how those auto-antibodies enter the brain, but recent research in mice and the brains of PANDAS children points to entrance through the mucus membrane of the upper nasal cavity. Researchers posit that auto-antibodies may travel along the olfactory nerves in the nasal cavity that sense smells. They break through the Blood-brain barrier (BBB) where they attack neurons in the basal ganglia that affect movement and mood.
The result is progressive brain damage, which Lucca has experienced.
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