ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Friday, January 6, 2012

Here's One For Ethics 101

Students in ethics classes love to sift through complicated scenarios that seldom are realistic. Medical ethics hypotheticals are among their favorites.



Try this one.



  • Patients have a quickly terminal disease.


  • They go from vibrant and healthy to unable to move or breathe in a matter of months.


  • Many sign up for clinical trials.


  • Nothing ever works. They struggle to figure out if they are getting worse less quickly after the experimental treatment than they were before. The bar for efficacy is low, and nothing ever clears that bar.


  • One clinical trial drug has resulted in some amazing, clear, anecdotal reports of improvements. This is huge. This is a surprise. This is different. This must be a clue.


  • The small clinical trial requires that after the patients' courses of treatment that they stay off the experimental drug for weeks.


  • During the weeks of no drug, the anecdotal reports show patients plummeting back to where they were before the trial started. The downhill slide continues with its former vengeance.



Are there not some ethical issues that need to be addressed here?



Are we not clever enough human beings to design trials where the data will speak and still allow the trial subjects a chance at life? Were we unprepared for a trial that would ever really do something for people with ALS? Are we right to simply watch and record data while patients fall like rocks?



This isn't a hypothetical scenario in some dream world. This is real. This is an ethical problem. This needs to be addressed.

1 comment:

  1. Sounds like Neuraltus Pharmaceutical's NP001 trial.

    ReplyDelete