A Tennessee couple is fighting for insurance coverage of life-saving treatment for their 9-year-old son with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), highlighting the challenges faced by families dealing with the condition.
The Struggle for Life-Saving Treatment: A Tennessee Family’s Fight
A Tennessee couple is fighting to get life-saving treatment for their 9-year-old son, Jameson, who suffers from a condition called Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). PANDAS affects one in every 200 children in the country and is characterized by sudden and extreme changes in personality, tics, abnormal movements, and rage, typically following an infection like Strep.
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The Wall family from Goodlettsville has been struggling to find the right treatment for Jameson. They have been relying on Intravenous immunoglobulin (IVIG), a treatment that has shown promising results in moderate and severe cases of PANDAS. However, the out-of-pocket cost for IVIG can reach nearly $15,000 a month.
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Laura and Corey Wall, who both work for the Metro Nashville Police Department, had insurance coverage for IVIG through Blue Cross Blue Shield. However, when Blue Cross Blue Shield lost the bid for Metro Government, leaving Cigna as the only option, Jameson lost access to insurance coverage for his treatment.
Insurance Coverage Denied: The Desperate Situation
Cigna has denied coverage for IVIG, stating that it is “medically unnecessary.” This denial has left the Walls in a desperate situation as they struggle to find a way to afford the life-saving treatment for their son.
A proposed bill in Tennessee that would have required private insurers to cover IVIG was not expected to pass in the legislature. Only eight states currently have legislation mandating insurance coverage for PANDAS, and Tennessee is not one of them.
Without access to IVIG, Laura Wall fears that their only option will be to place Jameson in residential care for his own safety. She emphasizes that denying him this treatment is akin to denying a diabetic insulin – it is essential for his well-being and quality of life.
The Final Appeal and Potential Solutions
The Walls are now in their final appeal with Cigna, hoping that their doctor can find a way to secure coverage for IVIG. They are also looking to pressure TennCare, the state’s Medicaid program, to approve PANDAS treatment, which could potentially influence private insurance companies to follow suit.
The case of Jameson Wall highlights the challenges faced by families dealing with PANDAS and the difficulties in obtaining insurance coverage for necessary treatments. It is a reminder of the importance of raising awareness about this condition and advocating for better access to care for affected children.
