I wish the regulators could see it as you do. They may say that they do through things like right to try or compassionate use, but the requirement of such programs often prevent companies from utilizing them at all. Most require the company to divulge information they're unwilling to if they wish to be paid, and if they give the products away for free it's to very few people.
I really believe that it's patients that should have the choices, at least to some degree. The corporations owning the products should be allowed to set a price for them which is perhaps half of what they intend the retail price to be. Insurance companies should agree to pay up to what they'd pay for SOC treatment, and patients and their Doctors should be able to say if the allocated funds are to be spent on the experimental treatment rather than the SOC or approved drugs.
As is, patients paying for drugs available through compassionate use either are wealthy, or are successful in running go fund me campaigns, which often requires substantial valuable time, even if successful. The point is, the current programs are little used and working poorly, they could be so much better. While the use of the products might not be considered a part of the clinical trials, they do add to the anecdotal evidence of efficacy whether used on the same disease, or something totally different that Dr. and patient agree to try, and document. I believe that every use under right to try or compassionate use should be documented.
Gary
