My dear, long-term friend who is a healthcare expert wrote an opinion piece that provides important perspective on Compassionate Use Policy and associated challenges for patients across diseases. 

Thank you, Dan, for this thoughtful review to help myself and others learn more about the predicaments we may face. You noted, "something must change." I believe that together, we can be that change. 

Please read and share this piece with anyone living with ALS or any life-threatening condition that can benefit from compassionate use:  https://timmermanreport.com/2021/04/compassionate-use-policy-has-everything-we-need-except-policy-and-compassion/