TEXAS — Liviniti, the pharmacy benefit manager for Mason Henderson, refused coverage for the cancer drug Lynparza on January 30. The denial left Henderson without access to a treatment his physicians prescribed based on his tumor’s genetic profile.

Henderson died in May 2026 after a two-year battle with brain cancer. His case illustrates the conflict between genomic medicine and insurance policies that require tissue-specific FDA approval.

Henderson was diagnosed with diffuse hemispheric glioma (H3-G34 mutant) in March 2024. This rare brain cancer affects fewer than 500 people annually in the U.S. according to data from the National Cancer Institute. He underwent surgery at Baylor St. Luke’s Medical Center in Houston that removed 90% of his tumor.

Liviniti stated in its explanation that "Lynparza is not approved for the diagnosis provided." Jefferson County refused to reimburse the cost of Lynparza for Henderson. An independent medical reviewer recommended a different drug for Henderson, but his doctors disagreed.

The family sought other avenues to obtain the medication. AstraZeneca declined the family's request for a donation of Lynparza. The drug costs approximately $8,700 per month out-of-pocket.

Tabitha Lowe, mother of Mason Henderson, criticized the coverage decision. "They have no guidelines for his cancer. They’re discriminating against him because his cancer is so rare," she said.

Schulte explained the constraints physicians face when seeking coverage for off-label treatments. "In general, we try to base our treatment decisions on large patient studies involving hundreds of patients," Schulte said. She noted that major clinical trials often exclude primary brain tumors.

Schulte described her interactions with Henderson's relatives during his care. "The family was wonderful. They were trusting in their team, but they asked appropriate questions to make sure that we were thinking about Mason as a person," Schulte said.

Olivier Elemento, Director of Weill Cornell Medicine’s Englander Institute for Precision Medicine, commented on the broader industry trend. "Insurance coverage routinely trails behind what genomic testing reveals about a patient’s cancer and what the science supports," Elemento said.

Why It Matters

Rare cancers represent about a quarter of all U.S. cancer diagnoses annually. Approximately 25,000 cases of brain cancer are diagnosed in the U.S. each year. Liviniti denied coverage for Lynparza in 14 other cases involving rare cancers between 2022 and 2025, according to internal records reviewed by the New York State Department of Financial Services.

The FDA approved Lynparza for ovarian cancer in 2014. In 2022, the FDA issued guidance allowing for expanded use of tissue-agnostic therapies based on biomarker testing. The FDA has approved nine tissue-agnostic drugs for patients with specific mutations since issuing guidance in 2022. This guidance has not yet led to widespread insurance coverage for off-label treatments in rare cancers like Henderson’s.

Timeline

Mason Henderson was diagnosed with diffuse hemispheric glioma (H3-G34 mutant) in March 2024. Henderson underwent surgery at Baylor St. Luke’s Medical Center in Houston that removed 90% of his tumor. A September 2025 scan showed Henderson's cancer had spread to his spinal cord.

Jacob Mandel of Baylor College of Medicine and Jessica Schulte of NYU Langone Health prescribed Lynparza for Henderson. Liviniti, Henderson's pharmacy benefit manager, refused coverage for Lynparza on January 30.

What's New

In 2022, the FDA issued guidance allowing for expanded use of tissue-agnostic therapies based on biomarker testing, but this guidance has not yet led to widespread insurance coverage for off-label treatments in rare cancers like Henderson’s. The World Health Organization classified diffuse hemispheric glioma (H3-G34 mutant) as a distinct entity in its 2021 update to the International Classification of Diseases for Oncology, showing the rarity and evolving understanding of this condition. The American Society of Clinical Oncology’s TAPUR study, which includes over 3,000 patients, excludes those with primary brain tumors, limiting access to off-label treatments for rare brain cancers like Henderson’s.

Lynparza is chemical compound (cancer therapy drug). World Health Organization is United Nations agency concerned with international public health.