Insurance Coverage Lags as Cancer Science, Treatment Move Forward

Mason Henderson with his mother, Tabitha Lowe, in November during a visit to New York, where Henderson was participating in a clinical trial to treat his brain cancer. Henderson died in May after a two-year battle with the disease. (Jerry Lowe) 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 discrim...