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Rare Brain Cancer Leaves Family Seeking Unapproved Drug

Mason Henderson, a 21‑year‑old from southeastern Texas, was diagnosed with a rare diffuse hemispheric glioma that spread to his spinal fluid after 18 months of ineffective chemotherapy. After a failed clinical trial in New York City, his doctors at Baylor College of Medicine and NYU Langone Health turned to the PARP inhibitor Lynparza, a drug approved for ovarian cancer but not for his tumor type. The treatment, prescribed on January 16, was denied coverage by Liviniti, the pharmacy benefit manager, citing lack of FDA approval for the diagnosis. Henderson’s family appealed to Jefferson County’s review board, which authorized an independent medical reviewer who recommended a different drug, but the doctors disagreed. AstraZeneca also declined to donate the medication, leaving the family to face an estimated $8,700 monthly out‑of‑pocket cost. The case highlights a broader problem: insurers often lag behind genomic testing and emerging science when determining coverage for ultra‑rare cancers. Experts from Weill Cornell Medicine noted that large clinical trials are unlikely for such rare tumors, forcing clinicians to rely on limited evidence and biologically reasonable assumptions. Despite the obstacles, Henderson’s team continues to pursue experimental therapies, underscoring the urgent need for clearer reimbursement pathways for patients with rare malignancies.

· CBS News

The essential points

  1. 01Mason Henderson, 21, battled a rare glioma that spread to his spinal fluid after 18 months of chemotherapy.
  2. 02Doctors switched to Lynparza, a PARP inhibitor approved for ovarian cancer, but insurers denied coverage citing lack of FDA approval for his diagnosis.
  3. 03Jefferson County’s review board and Liviniti both rejected the drug, forcing the family to confront a $8,700 monthly out‑of‑pocket cost.
  4. 04The case exposes a gap between genomic discoveries and insurance reimbursement, especially for ultra‑rare cancers lacking large clinical trials.
The full brief

Mason Henderson, a 21‑year‑old from southeastern Texas, was diagnosed with a rare diffuse hemispheric glioma that spread to his spinal fluid after 18 months of ineffective chemotherapy. After a failed clinical trial in New York City, his doctors at Baylor College of Medicine and NYU Langone Health turned to the PARP inhibitor Lynparza, a drug approved for ovarian cancer but not for his tumor type. The treatment, prescribed on January 16, was denied coverage by Liviniti, the pharmacy benefit manager, citing lack of FDA approval for the diagnosis.

Henderson’s family appealed to Jefferson County’s review board, which authorized an independent medical reviewer who recommended a different drug, but the doctors disagreed. AstraZeneca also declined to donate the medication, leaving the family to face an estimated $8,700 monthly out‑of‑pocket cost. The case highlights a broader problem: insurers often lag behind genomic testing and emerging science when determining coverage for ultra‑rare cancers.

Experts from Weill Cornell Medicine noted that large clinical trials are unlikely for such rare tumors, forcing clinicians to rely on limited evidence and biologically reasonable assumptions. Despite the obstacles, Henderson’s team continues to pursue experimental therapies, underscoring the urgent need for clearer reimbursement pathways for patients with rare malignancies.