‘He’s falling apart’: Family enters final fight for son’s ‘life-saving’ treatment
A Middle Tennessee couple says they’re in their final fight to get what they call a life-saving treatment for their 9-year-old son
By Amanda Hara
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NASHVILLE, Tennessee (WSMV) — A Middle Tennessee couple says they’re in their final fight to get what they call a life-saving treatment for their 9-year-old son, Jameson. They blame the inability of medical experts and insurance companies to agree on a relatively newly named condition and how to treat it.
WHAT IS PANDAS?
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) affect one in every 200 children across the country, according to the PANDAS Network. Symptoms usually arise following an infection like Strep and can include a sudden and extreme change in personality, tics, abnormal movements and rage.
Because PANDAS was identified in 1998, the PANDAS Network says a cloud of doubt and skepticism surrounds the condition, even in the medical community. The organization says some doctors dismiss symptoms which can complicate a path for treatment.
A DOWNWARD SPIRAL
A large tree with fresh blooms is the first thing you see when you arrive at the Wall Family home in Goodlettsville. Spring symbolizes rebirth, but Laura Wall says what’s happening inside her house is more like a slow death.
“When you say he’s dying, what do you mean?” asked WSMV4 anchor Amanda Hara. Laura replied, “He’s certainly not living. He’s falling apart.”
She shared a home video of her nine-year-old son Jameson and her husband Corey together on the couch. Jameson can be seen writhing around, even trying to hit Corey, who holds on to his son in an attempt to calm him down.
“Stop fighting. You’re not being safe,” Corey is heard saying.
Laura says the video shows Jameson’s spiral towards physical danger, not just to the people around him, but for himself. She says he has made suicidal and homicidal comments and is no longer allowed to sleep alone. On top of that, she says Jameson has tried to elope from the house requiring the installation of security cameras to ensure his safety.
TREATING PANDAS
The dramatic change in Jameson came the moment he missed a treatment that had been helping, Laura explained. Intravenous immunoglobulin (IVIG) is a treatment for moderate and severe cases of PANDAS. The out-of-pocket cost can run nearly $15,000 a month.
“He was doing so much better when he was doing the IVIG treatments. He had started to eat food by mouth. He had improved handwriting. He was able to work a light switch,” Laura said.
Laura and Corey both work for the Metro Nashville Police Department. However, when Blue Cross Blue Shield lost the bid for Metro Government, leaving Cigna as the only option, Jameson lost access to insurance coverage of IVIG treatments.
In two recent denial letters, Cigna informed the Walls that IVIG is ‘medically unnecessary.’
In a statement to WSMV4, Cigna Healthcare said, “While we cannot comment on individual cases, the health and well-being of the people we serve are our priority and we strive to resolve issues quickly.”
CHANGING THE LAW
A proposed bill in Tennessee that would have required IVIG coverage from private insurers, wasn’t expected to get enough votes in the legislature last week.
Co-sponsor Sen. Richard Briggs said, “I knew we did not have the votes but wanted to take the opportunity to give members and the public awareness of PANDAS. The legislature has never placed mandates on private insurance companies for specific coverage so I knew the goal would be awareness. The plan for the long term is to have TennCare approve PANDAS treatment then pressure the private companies to follow.” Only eight states have legislation that requires insurance coverage for PANDAS. Tennessee is not one of them.
WHAT’S NEXT?
“Our only option is residential care, there’s no way to keep him safe,” Laura said when asked what happens if Jameson can’t regain access to IVIG.
She says the third and final appeal with Cigna was just denied. She’s hoping her doctor has one last string he can pull.
“There’s nothing else that matters. It’s like denying a diabetic insulin. You can’t live without it,” Laura said.
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