Her son was dying, but his rare cancer made it difficult to get the right drug

September 21, 2026 / 5:00 AM EDT / KFF Health News

Eighteen months after his initial diagnosis, chemotherapy hadn't slowed 21-year-old Mason Henderson's rare brain tumor, which had spread to his spinal fluid. So he left his home in southeastern Texas to spend three weeks in a clinical trial in New York City.

But that failed, too, leaving a murky path for Henderson, whose cancer was so rare the World Health Organization had only given it a name in 2021. So early this year, Henderson's doctors, evaluating his tumor's deep genetic language, turned to a drug made by Merck and AstraZeneca called Lynparza.

It was not the standard of care for Henderson's condition — there wasn't really any standard, which is not unusual for rare cancers. And Henderson's insurance would not pay for it, despite the careful justification given by the two specialists treating him.

"They have no guidelines for his cancer," Henderson's mother, Tabitha Lowe, said in a March interview with KFF Health News. "They're discriminating against him because his cancer is so rare."

Every year, tens of thousands of people — representing about a quarter of all U.S. cancers — are diagnosed with tumors that differ enough from…

Original source: https://www.cbsnews.com/entertainment/