During a recent webinar on clinical trial enrollment, the daughter of a man with ALS explained how some stem-cell trials they considered were actually doing a placebo surgery. All patients accepted in the trial will undergo major surgery to access their spines and brains. Some will get stem cells. Some will get fake placebo stuff. Let's sew them up and see how they do, eh, doc?
I was amazed that a surgeon who took the oath about "first do no harm" would even consider this.
I was amazed that volunteers would be subjected to such a cruel risk, especially in a clinical trial system that is so risk-averse about so much.
Let the conversations begin. Is this the best we can do to evaluate safety and efficacy?
People with ALS deserve better than risky fake surgeries and scars that are painful in many ways.