Comment by jstummbillig
3 years ago
This seems bad. Help me understand.
In what ways does always letting individuals choose to take an experimental drug not work, if we make sure they know what is known and what is not? They are desperate, and that's a horrible place from where to make a decision, but dying is a really bad alternative.
What are the pitfalls that would allow for this to not always be the option? How would this go more horribly wrong than just letting these people die?
If it were for science alone, it might be fine. The problem is when Steve Jobs is sick and I walk up to him and sell him an experimental cure for $2,000,000,000. He can trivially pay it, but I have a huge incentive to lie. At a smaller scale, a more efficient conman can take all of someone's assets. And not just the dying person's. How many people wouldn't sacrifice everything to save a spouse's life or their child's?
The other concern is when you turn down medicine that might work for snakeoil that doesn't.
The lying seems like the problem there. Present the patient with accurate records of previous trials and outcomes, let them make an informed decision (with help from their doctor, if they're not scientifically literate) and I don't see a problem.
Could the former be fixed by requiring experimental drugs to be free of charge, or would that break how drug roll-out works? Somebody suggested an escrow account in this thread, which also seemed interesting.
I mean, the experimental drugs are already provided free of charge to the group participating in the study. I have no idea how it would change the economics if the ones given under any kind of "right to try" were also required to be free.
As of now, "right to try" drugs are supplied by the manufacturer under whatever terms they want at their discretion.
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