Access to Care in PANS: A Survey of Families’ Journeys to and Experiences with IVIG Treatment

SUMMARY

“Access to Care in PANS: A Survey of Families’ Journeys to and Experiences with IVIG Treatment” examined the experiences of families pursuing intravenous immunoglobulin (IVIG) treatment for Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS), with a focus on insurance barriers, financial burden, treatment delays, and quality-of-life outcomes. The study surveyed 60 caregivers and adult patients across the United States who had either received or attempted to obtain IVIG for PANS.
The findings demonstrated that obtaining IVIG was frequently associated with repeated insurance denials, prolonged appeals, and substantial delays before treatment initiation, particularly when IVIG was prescribed solely for PANS rather than for additional immune-related diagnoses. Many families reported severe financial strain, including depletion of savings, borrowing money, taking on additional employment, and selling major assets to pay for care. Despite these barriers, respondents described marked improvements following IVIG treatment across multiple domains, including emotional well-being, daily functioning, school participation, and family quality of life. The authors conclude that although IVIG access for PANS remains difficult and financially burdensome, treatment was associated with substantial perceived improvements for both patients and caregivers, highlighting the need for improved access pathways and further clinical research.

LINK TO PAPER: https://doi.org/10.1177/10445463261440137