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Girl's PANDAS Battle: Insurance Denies Crucial Treatment
22 Sep
Summary
- A young girl developed tics and OCD after a strep throat infection.
- Her family is fighting for insurance to cover $11,000 monthly PANDAS treatment.
- A state lawmaker is studying PANDAS to inform future legislation.
A Pennsylvania family is advocating for change after their daughter developed PANDAS, a condition causing sudden neuropsychiatric symptoms following a strep infection. Six months ago, 10-year-old Macy Janeda's life drastically changed, exhibiting tics and obsessive-compulsive behaviors. Her parents found a pediatrician who diagnosed PANDAS, a condition estimated to affect up to one in 200 children, though diagnosing it can be challenging due to overlapping symptoms.
Macy's family is now facing significant financial hurdles as her recommended treatment, an $11,000 monthly infusion called IVIG, was denied by insurance for being not medically necessary. This denial comes despite the family crediting IVIG with their daughter's return to daily life and activities. Pennsylvania currently does not mandate health insurance coverage for PANDAS diagnosis or treatment.
State Rep. Jill Cooper has introduced a resolution, passed by the state House, directing a study on PANDAS and PANS. The 18-month study aims to inform future legislation to improve awareness and ensure prompt, recognized treatment for affected children. Families like Macy's are pushing for this change to prevent similar struggles with out-of-pocket costs and coverage denials.
