Oncologists at Massachusetts General Hospital told Neil, 20, that he had a rare and incurable form of cancer known as DIPG, or diffuse intrinsic pontine glioma, which attacks the brain stem and usually kills its victims in a year or less.
The diagnosis dropped the college sophomore into a maelstrom. Doctors laid out one course that seemed of little use. Herbalists recommended dietary changes. Neil and his family grew excited about an experimental therapy offered by a renegade Texas physician, Dr. Stanislaw Burzynski, and he flew to Houston to get infusions — but got them for just for a single day before federal regulators abruptly ordered the treatments to stop.
Soon, Neil’s family was suing the Food and Drug Administration for the right to keep trying the new therapy. Late last week, the Fachons won, and Neil resumed the treatments.
The family drama comes amid growing tension — in Congress and across the US — about how far terminally ill patients can, and should, go in search of a miracle.
The FDA tries to protect patients from unproven remedies that might do more harm than good. But when a child has an incurable brain tumor, does the same cold calculus of risk and benefit apply?
“Neil wanted to be part of this research,” Wendy Fachon, Neil’s mother, told STAT. “What did he have to lose — his life?”
Sigh...it's always framed as a "fight" with the FDA or Big Pharma or something else when questionable treatments are blocked by regulations and, dare I say it, compassion for the patient. Is it really compassionate to allow dubious treatments to be used on the terminally ill?
I understand the desire for folks to try anything and everything. Reality sets in eventually.