Families urge coverage for PANS/PANDAS treatments as subcommittee hears House Bill 124

Representative Mitchell Scoggins brought House Bill 124 before the Life and Health subcommittee to request coverage under the State Health Benefit Plan for services and treatments for pediatric acute‑onset neuropsychiatric syndrome (PANS) and pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS).

"This bill would . . . require coverage for health care services for PANS and PANDAS in the state employee health insurance plan," Representative Mitchell Scoggins said, outlining the bill’s scope and noting the measure would affect Title 33 and Title 45 provisions referenced in the draft language.

Family members and clinicians told the subcommittee that delayed diagnosis and denials by insurers leave families to pay large out‑of‑pocket costs for specialty treatments such as intravenous immunoglobulin (IVIG) and, in some cases, ozone therapy. Parent Jessica Gowen described years of diagnostic delay for her children and testified that IVIG can cost $10,000 or more per dose; she said early diagnosis often avoids the need for the most expensive treatments. Parent Ada Owens described paying $48,006.48 out of pocket for two IVIG rounds and related care that restored her son’s functioning.

"IVIG is what saved our child. It is what brought our child back to us," Ada Owens said, recounting her son Arthur’s illness and recovery after two rounds of IVIG.

Several parents and young patients offered first‑hand accounts to illustrate the bill’s intent. Arthur Owens, 12, described losing basic school skills, developing tics and violent behavior, and later recovering after IVIG and rehabilitation. Lucy Ward, 16, testified that she had developed severe neurologic complications and that IVIG, once approved by insurers, became a long‑term therapy ordered by specialists.

Representative Campbell, a bill co‑sponsor, asked whether the draft had changed; Representative Scoggins said the current version explicitly names IVIG and ozone therapy to avoid ambiguity. Committee members asked about markers, triggers and prevalence: witnesses said strep, mycoplasma and other infections including COVID can trigger PANS/PANDAS; they estimated an incidence in children of about 1 in 200 based on advocacy‑group figures and compared prevalence to other pediatric illnesses.

Witnesses cited data from other states and a fiscal note discussed from Maine estimating increases on premiums measured in cents (Maine’s analysis identified an estimated upper bound of about $0.46 per member per month in that example), and noted that 17 states have enacted some form of mandated coverage. Witnesses also said that demonstration projects and clinic capacity matter: early diagnosis and local clinic capacity can reduce reliance on IVIG.

The subcommittee took testimony but did not vote. Representative Scoggins and advocates said they aimed initially to require coverage in the state employee plan rather than impose a private‑insurance mandate, acknowledging concerns about premium impacts and noting past efforts including study committees and clinic development at Children’s Healthcare of Atlanta.

Why it matters: Parents and clinicians told lawmakers that without coverage, many families must pay tens of thousands of dollars out of pocket for therapies they say are clinically indicated; witnesses argued that early diagnosis and treatment can prevent long‑term disability.

What’s next: The subcommittee heard testimony and indicated the bill will continue through the committee process; no vote was taken at this meeting.