Families, Doctors Urge Michigan Law to Require Insurance Coverage for PANS/PANDAS IVIG Treatment

Chair Representative Meerman convened the House Oversight Subcommittee on Children’s Child Welfare System on Oct. 17 to hear public testimony about medical insurance denials for children diagnosed with pediatric acute-onset neuropsychiatric syndrome (PANS) and pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS).

Families, clinicians and affected children described sudden, severe psychiatric and neurologic symptoms they said were caused by immune-driven brain inflammation and said delays or denials of recommended treatment — especially intravenous immunoglobulin (IVIG) — have produced prolonged harm. "Michigan health insurers are not doctors, but they are playing doctor, denying or delaying treatments prescribed by expert pediatric neurologists and physicians," said Bruce Goodman, a grandfather who testified about his granddaughter’s recovery after IVIG.

The witnesses said most children with PANS/PANDAS improve with antibiotics and steroids, but that a minority with severe, treatment‑resistant inflammation require IVIG. "For the most severe cases ... the recommended treatment is IVIG," Goodman said. Dr. Susan Youngs, a triple‑boarded pediatric subspecialist and medical director of a large subspecialty center, told the panel she has treated more than 200 children with PANS and that 10–15% of those patients required IVIG; she said nearly all children who received IVIG in her practice showed dramatic improvement.

Why it matters: Witnesses asked the…