NASHVILLE, Tenn. (WSMV) – A couple from Middle Tennessee is currently embroiled in a final battle to secure what they perceive as a life-saving therapy for their 9-year-old son, Jameson. They attribute the delay to the disagreement between medical professionals and insurance firms regarding a recently designated condition and its appropriate treatment.
Understanding Pandas
PANDAS, which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, and its counterpart PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) impact approximately one in every 200 children nationwide. Typically triggered by infections such as Strep, the symptoms may manifest as a sudden and drastic shift in behavior, tics, unusual movements, and bouts of rage.
The identification of PANDAS in 1998 has left a veil of uncertainty and skepticism surrounding the condition, even within the medical realm. The PANDAS Network highlights that some physicians disregard the symptoms, leading to challenges in devising a treatment plan.
A Deteriorating Situation
Upon arriving at the Wall Family residence in Goodlettsville, visitors are greeted by a flourishing tree in bloom. While spring symbolizes renewal, Laura Wall describes the atmosphere within their home as akin to a gradual decline.
When questioned by WSMV4 anchor Amanda Hara about Jameson’s condition, Laura expressed, “He’s certainly not living. He’s falling apart.”
She shared a poignant home video featuring her husband Corey and their son Jameson on the sofa. The footage captures Jameson in distress, exhibiting erratic movements and attempting to strike Corey, who endeavors to pacify him.
Laura elaborated on Jameson’s escalating risk, not only to those around him but also to himself. She revealed his alarming statements of self-harm and harm towards others, necessitating constant supervision to prevent elopement, prompting the installation of security cameras for his safety.
According to Laura, a resurgence of tics and involuntary movements is evident in the video below.
Treatment for Pandas
The stark transformation in Jameson’s condition became palpable when he missed a crucial treatment that had been beneficial. Intravenous immunoglobulin (IVIG) is a recognized therapy for moderate to severe PANDAS cases, albeit with a hefty monthly out-of-pocket cost of nearly $15,000.
Laura emphasized, “He was doing so much better when he was undergoing the IVIG treatments. He had begun eating solid food, improved his handwriting, and could operate a light switch.”
Both Laura and Corey are employed by the Metro Nashville Police Department. However, the shift from Blue Cross Blue Shield to Cigna as the sole insurance provider for Metro Government resulted in Jameson losing coverage for IVIG treatments.
In recent denial notices, Cigna deemed IVIG as ‘medically unnecessary.’
In response to WSMV4, Cigna Healthcare stated, “While we cannot discuss individual cases, the health and well-being of our members are paramount, and we are committed to swift issue resolution.”
Jameson flashes a thumbs-up to the camera during IVIG treatment for PANDAS. (WSMV)
Advocating for Change
A recent bill in Tennessee advocating for mandatory IVIG coverage by private insurers faced rejection last week.
Senator Richard Briggs, a co-sponsor, acknowledged, “I was aware that we lacked sufficient votes but sought to raise awareness about PANDAS among members and the public. Historically, the legislature has not imposed coverage mandates on private insurers, so the primary aim was to foster awareness. The long-term strategy involves securing TennCare approval for PANDAS treatment, subsequently exerting pressure on private insurers to comply.” Presently, only eight states enforce legislation mandating insurance coverage for PANDAS, with Tennessee not among them.
Looking Ahead
Laura expressed, “Our sole alternative is residential care if we cannot regain access to IVIG for Jameson.”
Despite a recent denial in their third and final appeal to Cigna, Laura remains optimistic that their physician may have one last recourse.
She concluded, “Nothing else holds significance. It’s akin to denying insulin to a diabetic. Survival without it is inconceivable.”
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