This post is part of my 2016 quest to do 12 races to honor people with ALS who have been inspirational to me. This is Race #5.
- People with a terminal illness, by definition, will die soon anyway. It’s not just ALS — some cancers, Parkinson’s, Alzheimers, Duchenne’s, SMA, etc.
- It takes somewhere between 7-15 years to get a drug through the FDA approval process.
- This argument makes so much sense that 32 states have passed Right to Try legislation — mostly by unanimous vote.
Okay, now the politics (deep sigh)…except that I don’t really get the politics here. The senators and congressmen that have signed onto S 2912 / HR 3012 are mostly Republican. I can see that — less government oversight/bureaucracy, more individual freedoms.
What I’m not seeing is the opposition on the Democratic side. There’s just radio silence as far as I can tell. The governor of California vetoed his state’s Right to Try legislation because he said that the FDA’s “expanded access” (aka “compassionate use”) program was sufficient to give patients access to unapproved drugs for serious illnesses. Upon patient complaints that the process took months (which for a terminal patient is much of the time they have left), the FDA “streamlined” the process and Gov. Brown wanted to wait for the streamlining to work (while more people die).