PITTSBURGH, Pa. - A South Hills family is pushing for changes to Pennsylvania health insurance rules after coverage was denied for an expensive treatment they say significantly improved their 10-year-old daughter's symptoms following a PANDAS diagnosis.
Dan and Shaina Janeda told CBS Pittsburgh that their daughter, Macy, developed severe behavioral and neurological symptoms shortly after having strep throat earlier this year.
The family said symptoms included sudden tics, obsessive-compulsive behavior and significant changes in personality and daily functioning.
Medical documentation reviewed by CBS Pittsburgh showed that Macy was ultimately diagnosed with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, commonly known as PANDAS.
PANDAS is generally described as a condition involving the abrupt onset of neuropsychiatric symptoms associated with a streptococcal infection. It is commonly discussed within the broader category of pediatric acute-onset neuropsychiatric syndrome, or PANS.
The American Academy of Pediatrics says PANS is likely a valid diagnosis but cautions that important questions remain about its causes, diagnostic standards and treatment.
Family says IVIG helped
Macy's family says intravenous immunoglobulin, commonly called IVIG, produced the biggest improvement among the treatments she received.
Her father told CBS Pittsburgh that the treatment helped her return to school and softball and allowed the family to see significant improvement in her condition.
The family says the treatment costs approximately $11,000 per month.
Insurance coverage was recently denied on the grounds that the treatment was not considered medically necessary, according to the family's account and documentation reviewed by CBS Pittsburgh.
Pennsylvania does not currently have a statewide law requiring health insurers to cover diagnosis or treatment specifically for PANS or PANDAS.
The family's experience highlights an ongoing debate over insurance coverage at a time when the medical evidence surrounding some treatments remains contested.
Medical evidence remains unsettled
The American Academy of Pediatrics issued a clinical report addressing PANS in 2025 and recommended a cautious, multidisciplinary approach to diagnosis and treatment.
The academy said available evidence for immunomodulatory treatments such as IVIG remains inconclusive and noted that a randomized controlled trial did not demonstrate efficacy for children diagnosed with PANS.
The AAP recommends that invasive immunotherapies generally be considered only in rare and severe cases after consultation with specialists experienced in pediatric neurology, rheumatology or related autoimmune neuropsychiatric conditions.
Some physicians, families and advocacy organizations disagree with the AAP's assessment of the treatment evidence and argue that selected patients have benefited from IVIG and other interventions.
That disagreement is one reason insurance coverage varies significantly among states and health plans.
Several states have enacted laws requiring some level of insurance coverage for PANS or PANDAS treatment. Pennsylvania has not enacted a comparable mandate.
Pennsylvania study underway
Pennsylvania lawmakers have begun a formal review of the issue.
House Resolution 528, introduced by Rep. Jill Cooper of Westmoreland County with bipartisan co-sponsors, directed attention toward PANS and PANDAS diagnosis, treatment access, insurance practices, provider capacity and policies adopted by other states.
The Joint State Government Commission currently lists a study of childhood neuropsychiatric disorders involving PANS and PANDAS as an ongoing project and identifies House Resolution 528 as its authorization.
The resolution calls for the commission to examine issues including insurance coverage, available state resources, access to specialized providers, the effects of misdiagnosis and approaches used in other states.
Cooper's original proposal called for findings and policy recommendations to be delivered to state officials and legislative leaders within 18 months.
The study itself does not create an insurance mandate and does not require insurers to cover IVIG or other specific treatments.
Any statewide coverage requirement would require additional legislative or regulatory action after the research is completed.
Westmoreland County lawmaker involved
Cooper told CBS Pittsburgh that families have contacted her seeking help navigating diagnosis and treatment.
She said the state study is intended to gather information about how Pennsylvania currently handles the disorders and what approaches other states have taken.
The resolution has bipartisan sponsorship, including Democratic and Republican lawmakers.
The policy question involves both access and medical evidence. Families seeking treatment argue that coverage denials can leave them without practical options, while clinical guidance emphasizes that stronger research is still needed for some therapies.
What happens next
For Macy's family, the immediate issue remains access to treatment they believe has helped their daughter.
For Pennsylvania policymakers, the longer-term question is whether the Joint State Government Commission's research leads to legislation addressing diagnosis, provider access or insurance coverage.
No statewide PANS or PANDAS insurance mandate is currently in effect in Pennsylvania.
The commission's study is ongoing, meaning any potential changes to state insurance requirements remain a future policy decision rather than an existing benefit available to Pennsylvania families.