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Committee hears testimony on bill proposing insurance coverage for PANS/PANDAS treatments including IVIG
Summary
Senate Bill 205 drew emotional testimony from families seeking mandated coverage for pediatric acute-onset neuropsychiatric syndromes (PANS/PANDAS). Supporters described high out-of-pocket costs for IVIG and urged coverage; the committee held the bill for further study.
Senate Bill 205, which would require private insurers and the state health benefit plan to cover treatment for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS) and pediatric acute-onset neuropsychiatric syndrome (PANS), drew an emotional hearing on Feb. 25 in the Georgia Senate Insurance and Labor Committee.
Sponsor Senator Sam Watson introduced the bill and said Section 1 addresses private insurance while Section 2 applies to the State Health Benefit Plan and other state-covered populations. Advocates, parents and affected children described severe, sudden behavioral and neurologic symptoms following common infections and urged coverage for therapies, including intravenous immunoglobulin (IVIG), when clinically indicated.
Arthur Owens, who identified himself as a 12-year-old from St. Simons Island, recounted repeated infections, Tourette-like tics and school exclusion before receiving IVIG out of state. “I was fully recovered,” Owens said of his post-treatment outcome, and he added that his family raised the roughly $21,000 they paid for treatment through community donations.
Sharon Zins, mother of a 7-year-old who has received monthly IVIG, told senators she paid more than $113,000 out of pocket in 2024 and said Anthem denied prior requests for coverage despite detailed medical-necessity letters from clinicians. “My daughter's health will always come first,” Zins said, noting the strain on her ability to employ staff and maintain a small business.
Supporters described IVIG as part of accepted clinical guidance for certain cases; the transcript cites the PANS/PANDAS consortium and JCAP treatment guidelines as the clinical references used by treating physicians. Witnesses said a small number of Georgia physicians currently treat PANS/PANDAS; advocates referenced a newly opened clinic at Children’s Healthcare of Atlanta (CHOA) treating several patients a month but said most families still must travel out of state or pay out of pocket.
Committee members asked whether Medicaid currently covers such treatments; witnesses said Medicaid did not provide coverage for these services as discussed in the hearing. Senator Watson provided a fiscal estimate for the state health benefit plan of roughly $100,000 annually across impacted state agencies if the bill were enacted.
No committee vote was taken; the hearing concluded with the chairman thanking witnesses. Lawmakers asked for follow-up information and suggested inviting pediatric clinicians who treat PANS/PANDAS to testify in later hearings to clarify clinical indications, national guidance and potential fiscal impacts.
