4 ms·

Agree, the Alzheimer's and ALS treatments that were approved recently were both cases where the patient advocacy groups stopped listening to experts and ironica

Agree, the Alzheimer's and ALS treatments that were approved recently were both cases where the patient advocacy groups stopped listening to experts and ironically harmed the people they are trying to help. It shows how important it is that the FDA keeps some emotional distance from the people they are trying to protect.

ta8645 3y ago
That's an interesting narrative, but are you sure that's actually what happened? It seems to elide the role of the drug manufacturer who pays for all these trials in the first place. Why would they pay for such doomed trials, just for the emotional hopes of patients? Are they that irresponsible with their stockholder's money? If so, they should probably be ousted and replaced with people who have more business savvy. Or alternatively, this really didn't have anything to do with hopeful patients or their advocates, but rather the greed of the pharma companies, hoping to push through unproven drugs for the sake of profit. I don't have any special insight into which narrative is true, but we've seen a lot of the second narrative historically.
- jfengel 3y ago
  They can't profit if it doesn't work. There is that bizarre case with the Alzheimer's drug, but that seems rare and not something they should pin their hopes on. It sounds to me as if the drugmakers and the patient advocates are coming from the same place. They are desperate for it to work, and will convince themselves of it on any thin evidence. Probably something like "it did X in a petri dish so it must work eventually." There are surely executives making a calculated risk, but I think they couldn't do it if there weren't also scientists who feed them over-optimistic guesses because they want it to work for the patients too.
  - wesselbindt 3y ago
    Why do you think they can't profit if they don't work?
    - jfengel 3y ago
      The FDA won't usually approve a drug that doesn't work. Yeah, regulatory capture occasionally happens, and the FDA's definition of "work" is looser than you might hope. But it's just not a profitable strategy to keep throwing good money after bad on a drug that simply doesn't do anything.
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rafaelero 3y ago
And, curiously, the Alzheimer drug do work, just like hypothesized by the "dumb advocacy groups". You just have to take them earlier in the profession of the disease.

ta8645 3y ago

That's an interesting narrative, but are you sure that's actually what happened? It seems to elide the role of the drug manufacturer who pays for all these trials in the first place. Why would they pay for such doomed trials, just for the emotional hopes of patients? Are they that irresponsible with their stockholder's money? If so, they should probably be ousted and replaced with people who have more business savvy. Or alternatively, this really didn't have anything to do with hopeful patients or their advocates, but rather the greed of the pharma companies, hoping to push through unproven drugs for the sake of profit. I don't have any special insight into which narrative is true, but we've seen a lot of the second narrative historically.

jfengel 3y ago
They can't profit if it doesn't work. There is that bizarre case with the Alzheimer's drug, but that seems rare and not something they should pin their hopes on. It sounds to me as if the drugmakers and the patient advocates are coming from the same place. They are desperate for it to work, and will convince themselves of it on any thin evidence. Probably something like "it did X in a petri dish so it must work eventually." There are surely executives making a calculated risk, but I think they couldn't do it if there weren't also scientists who feed them over-optimistic guesses because they want it to work for the patients too.
- wesselbindt 3y ago
  Why do you think they can't profit if they don't work?
  - jfengel 3y ago
    The FDA won't usually approve a drug that doesn't work. Yeah, regulatory capture occasionally happens, and the FDA's definition of "work" is looser than you might hope. But it's just not a profitable strategy to keep throwing good money after bad on a drug that simply doesn't do anything.

deleted 3y ago

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rafaelero 3y ago

And, curiously, the Alzheimer drug do work, just like hypothesized by the "dumb advocacy groups". You just have to take them earlier in the profession of the disease.