So if you had an incurable cancer and knew you were going to die in the next year, would you try unproven medications? By unproven I mean not yet FDA approved for use on humans so there is no way of knowing it wouldn't kill you sooner?
A young man, age 20, from Rhode Island is in this position. He has an inoperable tumor on his brain stem and a very bad prognosis. He found a renegade doctor who has been under review for a long time due to his previous unproven treatments. The patient is willing to see if he can contribute to help future patients. He started this doctor's treatment and then it was stopped by the FDA. Through a lawsuit he was able to restart the treatment.
"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?”
For his part, Neil said in an interview Tuesday that he has been focusing on staying upbeat, even amid the “crazy stress” of fighting the FDA for the right to try the infusions. “I’m thinking ‘What can I still do?’” he said. “I can hold my head up. I can keep the most positive spirit I can, and help my parents get through this the best they can. And that’s precisely what I intend to do.”"
So my question is would you, if you were in the same position? I am not sure I would. While I like the idea of helping others, if the treatment was so unproven that it might kill me sooner, I am not sure how I would handle the added stress. I am being honest here. One part of me says yes, the other part is saying not sure.