Skip to content
The Policy VaultThe Policy Vault

Daybue (trofinetide) — Highmark

Rett syndrome

Initial criteria

  • age ≥ 2 years
  • diagnosis of Rett syndrome (ICD-10: F84.2) confirmed by all of the following: pathogenic mutation in the MECP2 gene AND classic/typical Rett syndrome confirmed by all of the following: partial or complete loss of acquired purposeful hand skills AND partial or complete loss of acquired spoken language AND gait abnormalities: impaired or absence of ability AND stereotypic hand movements such as hand wringing/squeezing, clapping/tapping, mouthing, and washing/rubbing automatisms
  • prescribed by or in consultation with a specialist (for example neurologist, pediatrician) experienced in the treatment of Rett syndrome

Reauthorization criteria

  • member has experienced stabilization or improvement in clinical features of Rett syndrome (for example stabilization or improvement in symptoms, improvement on RSBQ, improvement in CGI-I score)

Approval duration

initial: up to 3 months; reauthorization: up to 12 months