3 ms·

Ending up in a trial != getting the treatment, and fewer than 3 percent of terminally ill patients gain access to investigational treatments through clinical tr

Ending up in a trial != getting the treatment, and fewer than 3 percent of terminally ill patients gain access to investigational treatments through clinical trials. Current 'compassionate use' exceptions are even worse - only 1,200 of those are granted each year to the lucky few, out of hundreds of thousands of people who could use them. Also, don't you think it's rather hypocritical to imply that being in a trial (if you win that lottery) is safe, while getting the drugs unfer RTT is not? Yes, there will no doubt be failures, but to deny a terminally ill patient the right to choose what to do with their own body seems rather crazy to me.

aaavl2821 8y ago
Perhaps a better solution would be better / more open clinical trials? Terminally ill patients and their families are very vulnerable and clinical data is difficult to parse even for doctors, and their are many people who would prey upon them if given the chance
olliej 8y ago
No i don't think it's hypocritical. Right to try laws allow companies to monetise desperate terminally ill patients. That's been shown repeatedly throughout history (and these days in the 'supplements' industry) to result in abuse of dying patients. And you get things like https://www.statnews.com/2017/11/21/herpes-vaccine-hotel-rooms/ https://www.statnews.com/2017/11/21/herpes-vaccine-hotel-roo... which was clearly a great plan - and yeah that's not "terminal", but the exact same kind of thing can happen for terminal diseases as well. The trial methodology removes the financial incentive, so that now you can't just take all of a dying persons money. By keeping the treatment in the trial model you also mean that we get data that can actually help -- maybe find out that the drug does not in fact work, or maybe finding out that it does! A patient who is not being treated under trial conditions is much less useful as a data point (if at all) because the placebo effect, and a bunch of other related ones, have repeatedly been found to lead to incorrect feedback - the person says that the drug makes them more comfortable, even though they didn't live any longer, is that because it actually made them feel better? Or was it placebo? Or was it a desire to be "helpful"? If you use them as a data point you may end up with a drug that doesn't actually help, and that drug gets sold. for money. to people who it doesn't help. Cool.

aaavl2821 8y ago

Perhaps a better solution would be better / more open clinical trials? Terminally ill patients and their families are very vulnerable and clinical data is difficult to parse even for doctors, and their are many people who would prey upon them if given the chance

olliej 8y ago

No i don't think it's hypocritical. Right to try laws allow companies to monetise desperate terminally ill patients. That's been shown repeatedly throughout history (and these days in the 'supplements' industry) to result in abuse of dying patients. And you get things like https://www.statnews.com/2017/11/21/herpes-vaccine-hotel-rooms/ https://www.statnews.com/2017/11/21/herpes-vaccine-hotel-roo... which was clearly a great plan - and yeah that's not "terminal", but the exact same kind of thing can happen for terminal diseases as well. The trial methodology removes the financial incentive, so that now you can't just take all of a dying persons money. By keeping the treatment in the trial model you also mean that we get data that can actually help -- maybe find out that the drug does not in fact work, or maybe finding out that it does! A patient who is not being treated under trial conditions is much less useful as a data point (if at all) because the placebo effect, and a bunch of other related ones, have repeatedly been found to lead to incorrect feedback - the person says that the drug makes them more comfortable, even though they didn't live any longer, is that because it actually made them feel better? Or was it placebo? Or was it a desire to be "helpful"? If you use them as a data point you may end up with a drug that doesn't actually help, and that drug gets sold. for money. to people who it doesn't help. Cool.