It's surprising to me that we don't have better mechanisms to green-light the combination of factors where (a) a drug company has a history of successfully delivering treatments with full FDA approval, (b) the patient has only months to live, (c) multiple doctors agree that the treatment is superior to any other option for them, and (d) the drug company is prohibited from any kind of marketing for the treatment.

Certainly there are edge cases and loopholes, but there should be much more of a culture of informed consent for terminally ill patients, with common-sense ways to ensure that "quack" drug companies don't take advantage of them.

(Ah, but as I type this, of course there is a party that might not consent to this: the insurer. That's a tough set of incentives to crack, especially with the fact that the treatment may have unknown side effects, and thus cause the patient to fall outside of actuarial expectations. But we've solved harder problems than this before.)