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

BackgroundPediatric Acute-Onset Neuropsychiatric Syndrome (PANS) is characterized by abrupt-onset neuropsychiatric symptoms, often infection- or immune-triggered. Intravenous immunoglobulin (IVIG) is recommended by expert guidelines for select cases, yet insurance denials and high out-of-pocket costs have been major barriers to access. MethodsWe surveyed 60 caregivers and/or adult PANS patients who pursued IVIG therapy, collecting data on insurance experiences, treatment protocols, financial strategies, and patient/caregiver quality of life (QoL) before and after treatment. ResultsMost patients (88%) eventually received IVIG; 10% were still in pursuit, and 2% discontinued trying. Insurance approval without appeal occurred in only 18%, while many families faced multiple denials and appeals. Insurance approvals were more expeditious for patients with comorbidities for which IVIG is typically covered; among those receiving IVIG for PANS alone, only 5% were treated within a month of the doctors order (compared to 38% of those receiving IVIG for comorbidities as well as PANS) and 14% waited [≥]9 months before treatment began. Financial strain was routine: one-third of families without substantial coverage (i.e., insurance that covered >=70% of expenses) reported extreme stress (10/10), 58% borrowed money, and 21% sold major assets. Even families with substantial insurance coverage commonly depleted savings or took on additional work. Prior to IVIG, patient Quality of Life (QoL) ratings were poor (means 2.1-2.8 across domains), with over one-third selecting the lowest possible ratings. During the six months following IVIG initiation, mean scores rose to 6.2-6.8, with over 60% reporting "good" to "exceedingly good" outcomes. Caregivers reported parallel gains, with family QoL ratings rising from 2.4-4.0 pre-treatment to 5.7-6.6 post-treatment. ConclusionsFamilies pursuing IVIG for PANS faced prolonged delays, repeated denials, and extreme financial strain, often resorting to loans, asset sales, and additional work. Despite these burdens, IVIG was associated with marked improvements in quality of life for both patients and caregivers, underscoring the treatments potential benefits and the urgent need for more equitable access.