Re: it still amazes me that
As I understand the right to try, there are many reasons someone could choose it over a clinical trial, if one were available for the precise disease that they had. Perhaps the biggest advantage is knowing you're getting the drug, not the control, as well as the fact that your Dr. can use the drug in a manner deemed best for you, not simply as prescribed in the trial protocol.
Of course there are all sorts of additional reasons, especially if there aren't trials to get into, or if it's your Doctor's opinion that the drug offers the best opportunity even if it's not been tried for the specific disease you're being treated for. I believe that people willing to take added risk to potentially see added rewards based on their Doctors opinion.
I believe that many top cancer research institutions have done one person IND's in the past to give individuals experimental treatment under essentially the same rules as established in right to try, I'm uncertain if filing an IND is required today, but as a patient at City of Hope I've met many who're alive today because of the personalized treatment done there. I know they were pioneers in areas like CAR-T, and they have developed many drug which others market in return for small royalties, Herceptin is one of them.
In order to work, right to try needs to be priced in a way that people, or their insurance companies will go along with. As is, I don't know that most drugs in trials are available under right to try provisions.