Challenges and Triumphs in Navigating Rare Cancer Treatment
September 21, 2026 / 5:00 AM EDT / KFF Health News
Eighteen months after his initial diagnosis, 21-year-old Mason Henderson faced an uphill battle against a rare brain tumor that chemotherapy couldn’t slow down. The tumor had already spread to his spinal fluid when he opted for a clinical trial in New York City, which ultimately proved unsuccessful. The World Health Organization only recognized Henderson’s type of cancer in 2021, leaving few treatment options. This year, his doctors explored Lynparza, a drug manufactured by Merck and AstraZeneca, based on the tumor’s genetic profile.
The treatment wasn’t standard for Henderson’s rare condition—a common challenge with rare cancers—and his insurance refused coverage despite justification from specialists. “They have no guidelines for his cancer,” said his mother, Tabitha Lowe.
Each year, rare tumors account for about a quarter of all U.S. cancers. Insurers often rely on FDA labels and expert recommendations to decide on reimbursements. However, rare cancers frequently lack FDA-approved treatment options, even when molecular tests suggest potential effectiveness. Olivier Elemento, from Weill Cornell Medicine’s Englander Institute for Precision Medicine, stated, “Insurance coverage routinely trails behind what genomic testing reveals.”
Henderson’s neuro-oncologists, Jacob Mandel and Jessica Schulte, opted to use Lynparza in combination with chemotherapy. While the evidence was limited, there was a “biologically reasonable” assumption it could be effective. Earlier, other providers noted similar brain cancers responding well to the drug.
Despite a prescription on January 16, Henderson faced coverage denial from his pharmacy benefit manager, Liviniti, and later from Jefferson County, where his stepfather works for the sheriff’s office. An independent medical reviewer also recommended an alternative drug, which his doctors opposed. AstraZeneca refused a donation request for the drug, leaving the family with a massive monthly expense.
Before his diagnosis, Henderson led an active lifestyle, playing sports and working at a local paper mill in Texas. On March 15, 2024, his brother discovered him post-seizure, prompting an emergency room visit that revealed a large tumor, identified as diffuse hemispheric glioma (H3 G34-mutant).
Surgery removed 90% of the tumor, but complete elimination was difficult due to delicate brain tissue. After 16 months of treatment, the cancer spread to his spinal cord by September 2025. A subsequent clinical trial in New York provided intense irradiation but failed to halt the cancer.
Brain cancers, representing 25,000 cases annually, are rare compared to breast (320,000 cases) and lung cancers (229,000 cases). With few treatment options for conditions like Henderson’s, brain cancers are often excluded from trials due to market size and drug testing challenges.
Science is increasingly identifying precise drug targets for cancer treatment, leading the FDA to approve “tissue agnostic” drugs based on tumor mutations, regardless of origin. As genome sequencing grows in use, insurance adaptation is necessary, according to Elemento. Diverse clinical experiments help accommodate late-stage cancer patients with drug combinations based on genetic profiling.
In Henderson’s struggle, diagnosis accuracy never posed a problem, but the scarcity of suitable treatment options and financial support complicated care. With no other options, Lowe turned to social media to raise awareness. Her posts, which tagged relevant parties, gained hundreds of shares and led AstraZeneca to provide the medication.
Sadly, by mid-April, Henderson’s condition deteriorated. He passed away on May 4 after two months on Lynparza. His family has since established a scholarship fund in his memory, raising substantial amounts through various efforts.
Reflecting on the journey, NYU’s Schulte remarked, “Faster treatment would have been better,” though its impact on Henderson’s survival is uncertain. Lowe shared her regrets, “There’s something especially painful thinking about how much time I spent fighting healthcare instead of being with Mason.” Her sentiment underscores the complex challenges faced by families dealing with rare cancer and the imperative of timely care.
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