Rare brain tumor patient battles insurance denial for off-label Lynparza treatment
Mason Henderson, a 21-year-old with a rare diffuse hemispheric glioma, was prescribed the off-label drug Lynparza, but his insurer and county health plan refused coverage.
Mason Henderson, diagnosed with the rare H3 G34-mutant diffuse hemispheric glioma, underwent surgery, radiation and chemotherapy without lasting control of his disease. In early 2024 his neuro-oncologists selected Lynparza (olaparib) based on the tumor’s genetic profile, despite the drug not being standard for his condition. Liviniti, the pharmacy benefit manager, rejected the claim, stating the drug was not approved for his diagnosis, and Jefferson County’s health plan also refused coverage.
An appeal triggered an independent medical review that upheld the denial, recommending a different therapy. Subsequently, AstraZeneca’s patient-assistance program sent a bottle of Lynparza to Henderson’s pharmacy. The case highlights challenges faced by patients with ultra-rare cancers in obtaining targeted therapies.
Why it matters
The story shows how insurance policies can block access to promising off-label cancer drugs for rare disease patients.
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