Subcommittee hears bill to require state health plan coverage for PANS/PANDAS treatments including IVIG

House Bill 124 (LC 520700 s) was presented to the Life and Health Insurance Subcommittee to require coverage under the state employee health benefit plan for health-care services related to PANS and PANDAS, including intravenous immune globulin (IVIG) and ozone therapy.

Representative Mitchell Scoggins (R‑District 14), sponsor of the bill, opened with family testimony and a short news clip describing children whose behavior and health deteriorated after infections. “This bill would, deals in Title 33 and Title 45 … relating to the general provisions to insurance and the state employee’s health insurance plan so as to require coverage for health care for services with PANS and PANDAS,” Scoggins said, noting the bill’s language explicitly includes IVIG and ozone therapy.

Parents and caregivers gave extended testimony about diagnosis timelines, treatment costs and gaps in provider awareness. Jessica McGowan, a parent and advocate who has worked with the Southeastern PANS PANDAS Association, summarized the treatment pathway and cost drivers: “That treatment, for kids who don’t get a timely diagnosis is a standard of care. And, it can cost $10,000 or more per dose,” she said, referring to IVIG. McGowan and Representative Scoggins told the committee that early diagnosis and quick, inexpensive treatments — antibiotics, NSAIDs, steroids — often prevent the need for IVIG.

Multiple families described paying tens of thousands of dollars out of pocket. Ada Owens said two rounds of IVIG cost about $21,000 and that her family’s total out‑of‑pocket spending approached $48,006.48 to treat her son; she added, “IVIG is what saved our child. It is what brought our child back to us.” Another witness, Sharon Zinn, said she paid $113,000 out of pocket in 2024 to treat her daughter and was still pursuing care out of state.

Adolescent patients testified directly. Twelve‑year‑old Arthur Owens described rapid loss of skills, tics, and behavioral changes after repeated infections and said IVIG “was a lifesaver.” Sixteen‑year‑old Lucy Ward described recurrent seizures and hospitalizations and said she has “received IVIG every 28 days for the past 3 years,” adding that earlier access might have limited long‑term complications.

Witnesses and sponsors pointed to other states’ experience and limited fiscal estimates. Scoggins cited a Maine fiscal note that estimated the highest projected impact at $0.46 per premium. McGowan said 17 states have passed insurance coverage for PANS/PANDAS and other states are considering legislation. Committee members asked whether the bill would require private insurers to change coverage; witnesses and the sponsor clarified the bill applies to the state employee health benefit plan only and does not mandate private insurers’ behavior.

Several legislators raised premium and implementation concerns. Representative Campbell, a co‑sponsor, said the bill was revised to make IVIG and ozone therapy explicit. Representative Williams asked whether Medicaid or private plans would be required to cover the treatments; witnesses said HB 124 as written addresses the state plan only. McGowan told the committee that data from states with mandates suggest the number of patients who ultimately require IVIG is small and, with adequate diagnostic capacity, the premium impact can be modest.

The subcommittee heard extensive testimony but took no vote. No formal amendment or committee action occurred during this hearing.