Family battles insurance for IVIG treatment for son diagnosed with PANS

In a poignant testimony at the recent Insurance Life & Health Subcommittee meeting, a mother shared her family's harrowing journey through the complexities of securing medical treatment for her son, Arthur, who suffers from Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). Under the bright lights of the Georgia State Legislature, she recounted the struggles faced not only by her family but by many others navigating the labyrinth of insurance coverage for this often-misunderstood condition.

Despite having what she described as "really good insurance," the family faced repeated denials for coverage of Intravenous Immunoglobulin (IVIG) treatment, a critical therapy for Arthur's condition. The emotional weight of her words resonated as she detailed the severe headaches that prompted a visit to Shands Children's Hospital in Gainesville, Florida. Unfortunately, upon mentioning Arthur's PANS diagnosis, the family was met with resistance; the hospital staff refused to acknowledge or treat his condition, instead recommending a psychiatrist.

The mother highlighted a troubling reality: while some of the nation's leading children's hospitals, such as Boston Children's and Johns Hopkins, recognize and treat PANS and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections), many families still encounter barriers to care. She pointed out that 17 states currently mandate insurance coverage for these conditions, with 14 more states considering similar legislation.

Statistics shared during the meeting painted a stark picture of the prevalence of PANS, with estimates suggesting that 1 in 200 American children are affected—comparable to rates of pediatric cancer and diabetes. The American Academy of Pediatrics has recently acknowledged PANS and PANDAS as legitimate diagnoses, a significant step forward in the fight for recognition and treatment.

In a desperate bid for help, the mother reached out to Dr. Claude Ashley in Alabama, a specialist in PANS and PANDAS, who confirmed that IVIG was the necessary next step. However, the financial burden was staggering; the family incurred over $48,000 in out-of-pocket expenses for treatments, travel, and related costs. They turned to their community for support, launching a GoFundMe campaign that highlighted the collective struggle many families face in securing adequate care.

As she concluded her testimony, the mother expressed gratitude for the support they received, acknowledging that they were among the fortunate ones. Yet, her story underscored a pressing need for systemic change in how insurance companies and healthcare providers address PANS and PANDAS, ensuring that no family has to endure such a fight alone. The meeting served as a reminder of the ongoing challenges in healthcare access and the importance of advocacy for vulnerable patients and their families.