Parents, doctors push bill to require state health plan coverage for PANS/PANDAS treatments

House Bill 124, presented Jan. 8 to the Life and Health Insurance Subcommittee by Representative Mitchell Scoggins, would require coverage under the State Health Benefit Plan for health care services related to PANS and PANDAS, including specified therapies such as intravenous immunoglobulin (IVIG) and ozone therapy.

The bill’s sponsor, Representative Mitchell Scoggins, described personal experience in his family and introduced parents and clinicians who testified about delayed diagnoses, extensive out-of-pocket costs, and clinical recommendations. "This bill…deals in Title 33 and Title 45…so as to require coverage for health care services with PANS and PANDAS," Scoggins said, citing the two code titles the measure would affect.

Multiple parents testified about children who experienced abrupt behavioral and neurological declines after common infections and who later improved after receiving IVIG or other specialized care. Jessica Gowen, a parent advocate with the Southeastern PANS/PANDAS Association, summarized families’ experiences and described past legislative and clinical efforts, including a 2019 study committee and a demonstration project that was not implemented; she said early diagnosis and local clinical capacity reduce the need for costly IVIG infusions.

Several parents gave specific accounts: Ada Owens said her son Arthur developed severe tics, intrusive thoughts and a loss of basic skills after repeated infections and that two rounds of IVIG, which she said cost $21,000 for two infusions and $48,006.48 in total out-of-pocket expenses for the family, restored much of his functioning. Arthur, 12, addressed the panel and described his symptoms and recovery: "It was horrible…The IVIG was a lifesaver," he said.

Lucy Ward, 16, told the committee she has received regular IVIG treatments at Children’s Healthcare of Atlanta and other centers and has had repeated seizures and hospital visits; she said she has received monthly IVIG infusions for several years and described substantial school absence and medical care prior to treatment. Sharon Zinn, a parent of a 7-year-old who has received monthly IVIG, said she has had to pay substantial out-of-pocket costs and travel for care and that some major Georgia pediatric centers had not recognized or treated PANS when her child presented.

Committee members asked about clinical markers and the course of illness. Witnesses said PANDAS is frequently triggered by streptococcal infections and PANS can be triggered by multiple infectious agents (strep, mycoplasma, influenza, COVID), and that early antibiotic and anti-inflammatory treatment is inexpensive when the condition is recognized early; IVIG is used in more severe or treatment-resistant cases. Jessica Gowen said the Cunningham Panel test is used by some providers and costs about $1,000; IVIG doses can cost $10,000 or more per infusion.

Representative Campbell, a co-sponsor, asked whether the current version of the bill changed to explicitly include IVIG and ozone therapy; Scoggins said it did. The bill, as written for the hearing, would apply to the State Health Benefit Plan rather than imposing a private-market mandate on all insurers, though members asked about premiums and whether private insurers could raise rates; witnesses and the sponsor said the measure was limited to the state employee plan for now and that data from other states indicates a small premium impact if local diagnosis and treatment capacity exist.

The subcommittee received testimony but did not vote on HB 124 at the hearing. Supporters asked lawmakers to consider the bill to prevent families from bearing very high out-of-pocket costs and to expand access to timely diagnosis and treatment for affected children.

Why it matters: Parents and clinicians told the committee that delayed recognition of PANS/PANDAS leads to severe, potentially long-term neurological and psychiatric impairment, and that coverage for targeted therapies could be decisive for children’s outcomes. Supporters pointed to clinical programs opening in Georgia and to other states that have enacted coverage or related measures.

What’s next: The bill will continue through the committee process; no committee vote was recorded at this session.