This story was made available early to subscribers of STAT Plus.
COLUMBUS, Ohio — Two days after getting an experimental cancer therapy last May, Max Vokhgelt spiked a fever of 105.2. Surprisingly, he and his doctors saw it as a good sign: It meant the specially engineered cells coursing through his body were doing their job, attacking the leukemia he had been battling on and off for seven years.
As expected, his fever subsided. From his hospital bed in St. Louis, Max, 24, phoned his grandmother, Alexandra Armstrong. “His voice was firm and energetic” in a way it hadn’t been for days, she said. “He said, ‘Bubba, my fever went down. I won. In five or six days, I will be cancer-free.’” It was the last conversation they ever had.
That night, Max began suffering seizures and became delusional. He lost consciousness and soon was put on a ventilator to help him breathe. Two days later, at 7:25 a.m. on May 24, he was declared brain-dead and the ventilator was turned off. His father, mother, younger brother, and a rabbi were at his bedside.
I feel terrible for the family but this is to be expected in phase 1 trials. The WHOLE idea of the phase 1 process is to determine is this XYZ safe and then if safe is it effective. In MANY Ph1 trials people die and the issue is less public since the trials are done in places other then St Louis or Philly. EVERYONE involved in a phase one trials needs to expect to ether die or see negative effects overshadow the potential positive ones. You are NOTHING more then a guinea pig and need to accept that. This young man made his own mental impression of a drug as a savior when no scientist even the folks at Juno ever expected it to work. They expected it to POSSIBLY show some positive results but surely a brand new category of drug on its first trial is not expected to make miracles happen. His enthusiasm should have been to be involved in ground-breaking science NOT to be cured. He needed to accept his death was eminent and this was his chance to make a societal difference. AT 24 that is a tough thought process to accept.
I have been a surgical oncologist for 30++ years and personally have stage 4 cancer and yet I won’t even try a PH1 trial as the risks are simply too great. Now I guess if I was 24 and full of the energy of life I might be enamored to think that I could be the Henrietta Lacks of the drug world but in reality the family here needs to realize that his death is a good thing it allowed Juno to go back to adjust their CART product to get it back in with much better results for the next 3000 people who need it
Dr D
The worse you can do to someone is mess with there immune system. You don’t need a medical license to know that.
What those people in health industry lack is empathy. If Max was their son, would they use such yet speculative harsh applications on him. It is the greed that makes them do this. Just look at how much the company CEO is earning from the despair of Max’s relatives and this beaituful person.
These people must think that this treatment has no risks though they are completely informed that this is experimental. The risks are very great as are the potential benefits.
As I learned early in my career even if you put the possibility of death in a consent form it has no exculpatory value if the patient actually dies during the trial. As legal defense mechanisms informed consents are not worth the paper they are written on.
Please, do not send me to an article that has a link for a paid subscription! If you want people who review industry news on your site- ask them AFTER they read your “Exclusive” You just might get folks who sign up….
Instead of remonstrating get off your ass and find another website that ran the full article. I’ve done that with pieces that were supposedly Exclusive but somehow popped up on another site. If you really can’t find it elsewhere immediately wait a few days and it will. I respect that you’re saving your pennies for your Archie subscription.
Before signing on for an experimental drug study, one is informed of the unknown factor and that the drug may or may not be beneficial…and death could result.
Fyi
If you think anyone’s going to pay for this garbage, you are loopier than a stock salesman
Then why did you read it? I found the article informative.