I don't know if I agree with their entire solution, I do think that as people who live with a debilitating incurable disease we should have some sort of consent to sign off on any off label treatments or option to try a new drug in Phase III without signing on into trial- I will sign a legal waiver taking responsibility.

......there is little concern for those affected, only a rigid adherence to rules to 'protect' those that most need the new drugs. An inverted logic.
Peter