4 ms·

With the caveat that they can only be charged a nominal fee, say the actual production cost of the drug. It would be good to avoid fraudsters stripping desperat

by rfrey 2y ago

With the caveat that they can only be charged a nominal fee, say the actual production cost of the drug. It would be good to avoid fraudsters stripping desperate people if all their assets

danielmarkbruce 2y ago
This is an hilariously straightforward and brilliant idea. It's no holds barred, but the goal has got to be a real, approved drug in the future. Not profits right now.
cogman10 2y ago
I'd probably go further and say it must be free of charge. The problem with a nominal fee is fraudsters can be really clever at finding ways to bump up production costs. You might give the company doing the research relaxed liability, but even then you'd want to be careful. After all, you wouldn't want a coal mining operation conducting "research on lung cancer treatment" by sending in miners without PPE. If this is a legitimate research into curing cancer then eating the cost to treat test subjects is the least a company could do. The results are what's can be worth a lot of money.
- cogman10 2y ago
  Actually, thinking about this further, even free of charge could be problematic. I can 100% see a "cancer research and spiritual healing" clinic popping up that uses the promise is a cure as a way to get someone in the door so they can later be sold on energy healing to increase effectivity of the sugar pill they give away. Fraudsters simply love preying on the desprate.
  - ToValueFunfetti 2y ago
    Would it be illegal today to give people sugar pills sell them energy healing?
    - cogman10 2y ago
      Ish. You can't say that a pill or treatment cures cancer if there's no evidence to back that up. Of course in private I'm sure that's said all the time. My concern with lowering the bar for advertising such services is it makes it easier for someone to jump in with "Our clinic is actively researching cancer treatments and offers free experimental drugs".
    - IX-103 2y ago
      Depends on how it's marketed. As long as they avoid making specific health claims (say "boost immune function" instead of "cures disease X") they can get away with it. If it's "homeopathic" they can even be sold on the same shelves as actual medicine, with similar looking labels.
- TZubiri 2y ago
  I don't see the issue or point of limiting profitabilit, what am I missing? Here's the scenario I have in mind. John has an uncommon cancer X with no cure. John contacts Cancer R&D Corp. John pays 80% of his life savings to R&D corp for research into his specific cancer X and provides himself as a test subject in the meantime. R&D corp attempts to find a cure for the disease, if the mission fails and John dies, in the future if other patients with cancer X appear, they can take over from where they left. Payment can be split into an upfront half for research and bonus paid upon a successful cure (or year of quality life milestones) to give incentives for actual success. So as to avoid companies from benefitting from never finding a cure.
  - fwip 2y ago
    To see the issue, replace "R&D Corp" with "Mystical Crystal LLC" or "Mr. Henry's Miraculous Snake Oil Elixir Ltd." Fraudsters and scam artists are happy to rip off people trying to avoid death.
    - JumpCrisscross 2y ago
      Or Steve Jobs. The problem isn't so much that the treatments don't work. It's that they're pursued exclusive of ones that do.
    - TZubiri 2y ago
      I responded to this in other posts, but this would be throwing the baby with the bath water. And it's especially bad as the good suffers more. Legitimate companies will follow the law, but the ilegitimate actors will just sell mystical crystal anyways.
      - fwip 2y ago
        I've never really understand this whole "laws are useless because criminals will break them" thing.
  - cogman10 2y ago
    The issue is that fraudsters would like nothing more than to call themselves R&D and to sell BS to desperate people looking for a cure. That already happens very frequently. For example, bleach enemas to cure autism [1]. Colloidal metals to cure cancer [2]. And a whole host of other cure-alls. Now imagine you have a mechanism where they can claim to be legitimate research AND there is an incentive to bilk people out of 80% of their life savings. Heck, even imagine what happens if legitimate for profit companies can use this route for revenue generation. If they have a route to sell drugs which has less regulation and liability, why would they ever release a drug through the full FDA process? And why, you might ask, is regulation needed for this sort of stuff? Well, think Vioxx.[3] Sure, maybe this cancer drug works but it also might give you a heart attack. Without getting it fully approved or researched drug manufacturers have no reason to actually look into downstream effects. They have every incentive to just keep it on the market (like they did with Vioxx) and ignore evidence of adverse results. Taking profit out of the equation makes it so that the research isn't and can't be endless. It makes sure there isn't a perverse incentive to make lethal drugs that work good enough for some diseases. I'd love it if we could have a win win, but the free market loves to reward bad actors. [1] https://www.nbcnews.com/tech/internet/moms-go-undercover-fight-fake-autism-cures-private-facebook-groups-n1007871 https://www.nbcnews.com/tech/internet/moms-go-undercover-fig... [2] https://www.healthline.com/health/colloidal-silver-cancer https://www.healthline.com/health/colloidal-silver-cancer [3] https://en.wikipedia.org/wiki/Rofecoxib https://en.wikipedia.org/wiki/Rofecoxib
- ChadNauseam 2y ago
  I could be wrong, but my understanding is that "free of charge" is already legal, and the FDA only regulates drugs that are sold and not ones that are given freely
  - cogman10 2y ago
    I'm not sure how the law pays with free goods. I know that a drug company can't skirt regulations around clinical trials simply by making participation free (in fact, clinical trials usually pay the subjects.)
n4r9 2y ago
I think you also need a caveat that failures must be recorded, and a specific treatment can only be used so many times without success. That will avoid providrrs who are self-deluded about the efficacy of their favourite drug/therapy.
TZubiri 2y ago
Conversely, if you ban actually charging for last-attempt experimental research services, then those desperate people will only be left to seek: 1- Honest researchers who can't charge too much. 2- Unscrupulous quacks who will take all your money regardless of law. With the second option being much more common due to incentives. If however you allow research facilities to take donations/payments to fund research related to a specific disease, then you will increase the incentive for legitimate companies, even if the odds are still low or close to 0.

by rfrey 2y ago

With the caveat that they can only be charged a nominal fee, say the actual production cost of the drug. It would be good to avoid fraudsters stripping desperate people if all their assets

danielmarkbruce 2y ago

This is an hilariously straightforward and brilliant idea. It's no holds barred, but the goal has got to be a real, approved drug in the future. Not profits right now.

cogman10 2y ago

I'd probably go further and say it must be free of charge. The problem with a nominal fee is fraudsters can be really clever at finding ways to bump up production costs. You might give the company doing the research relaxed liability, but even then you'd want to be careful. After all, you wouldn't want a coal mining operation conducting "research on lung cancer treatment" by sending in miners without PPE. If this is a legitimate research into curing cancer then eating the cost to treat test subjects is the least a company could do. The results are what's can be worth a lot of money.

cogman10 2y ago
Actually, thinking about this further, even free of charge could be problematic. I can 100% see a "cancer research and spiritual healing" clinic popping up that uses the promise is a cure as a way to get someone in the door so they can later be sold on energy healing to increase effectivity of the sugar pill they give away. Fraudsters simply love preying on the desprate.
- ToValueFunfetti 2y ago
  Would it be illegal today to give people sugar pills sell them energy healing?
  - cogman10 2y ago
    Ish. You can't say that a pill or treatment cures cancer if there's no evidence to back that up. Of course in private I'm sure that's said all the time. My concern with lowering the bar for advertising such services is it makes it easier for someone to jump in with "Our clinic is actively researching cancer treatments and offers free experimental drugs".
  - IX-103 2y ago
    Depends on how it's marketed. As long as they avoid making specific health claims (say "boost immune function" instead of "cures disease X") they can get away with it. If it's "homeopathic" they can even be sold on the same shelves as actual medicine, with similar looking labels.
TZubiri 2y ago
I don't see the issue or point of limiting profitabilit, what am I missing? Here's the scenario I have in mind. John has an uncommon cancer X with no cure. John contacts Cancer R&D Corp. John pays 80% of his life savings to R&D corp for research into his specific cancer X and provides himself as a test subject in the meantime. R&D corp attempts to find a cure for the disease, if the mission fails and John dies, in the future if other patients with cancer X appear, they can take over from where they left. Payment can be split into an upfront half for research and bonus paid upon a successful cure (or year of quality life milestones) to give incentives for actual success. So as to avoid companies from benefitting from never finding a cure.
- fwip 2y ago
  To see the issue, replace "R&D Corp" with "Mystical Crystal LLC" or "Mr. Henry's Miraculous Snake Oil Elixir Ltd." Fraudsters and scam artists are happy to rip off people trying to avoid death.
  - JumpCrisscross 2y ago
    Or Steve Jobs. The problem isn't so much that the treatments don't work. It's that they're pursued exclusive of ones that do.
  - TZubiri 2y ago
    I responded to this in other posts, but this would be throwing the baby with the bath water. And it's especially bad as the good suffers more. Legitimate companies will follow the law, but the ilegitimate actors will just sell mystical crystal anyways.
    - fwip 2y ago
      I've never really understand this whole "laws are useless because criminals will break them" thing.
- cogman10 2y ago
  The issue is that fraudsters would like nothing more than to call themselves R&D and to sell BS to desperate people looking for a cure. That already happens very frequently. For example, bleach enemas to cure autism [1]. Colloidal metals to cure cancer [2]. And a whole host of other cure-alls. Now imagine you have a mechanism where they can claim to be legitimate research AND there is an incentive to bilk people out of 80% of their life savings. Heck, even imagine what happens if legitimate for profit companies can use this route for revenue generation. If they have a route to sell drugs which has less regulation and liability, why would they ever release a drug through the full FDA process? And why, you might ask, is regulation needed for this sort of stuff? Well, think Vioxx.[3] Sure, maybe this cancer drug works but it also might give you a heart attack. Without getting it fully approved or researched drug manufacturers have no reason to actually look into downstream effects. They have every incentive to just keep it on the market (like they did with Vioxx) and ignore evidence of adverse results. Taking profit out of the equation makes it so that the research isn't and can't be endless. It makes sure there isn't a perverse incentive to make lethal drugs that work good enough for some diseases. I'd love it if we could have a win win, but the free market loves to reward bad actors. [1] https://www.nbcnews.com/tech/internet/moms-go-undercover-fight-fake-autism-cures-private-facebook-groups-n1007871 https://www.nbcnews.com/tech/internet/moms-go-undercover-fig... [2] https://www.healthline.com/health/colloidal-silver-cancer https://www.healthline.com/health/colloidal-silver-cancer [3] https://en.wikipedia.org/wiki/Rofecoxib https://en.wikipedia.org/wiki/Rofecoxib
ChadNauseam 2y ago
I could be wrong, but my understanding is that "free of charge" is already legal, and the FDA only regulates drugs that are sold and not ones that are given freely
- cogman10 2y ago
  I'm not sure how the law pays with free goods. I know that a drug company can't skirt regulations around clinical trials simply by making participation free (in fact, clinical trials usually pay the subjects.)

n4r9 2y ago

I think you also need a caveat that failures must be recorded, and a specific treatment can only be used so many times without success. That will avoid providrrs who are self-deluded about the efficacy of their favourite drug/therapy.

TZubiri 2y ago

Conversely, if you ban actually charging for last-attempt experimental research services, then those desperate people will only be left to seek: 1- Honest researchers who can't charge too much. 2- Unscrupulous quacks who will take all your money regardless of law. With the second option being much more common due to incentives. If however you allow research facilities to take donations/payments to fund research related to a specific disease, then you will increase the incentive for legitimate companies, even if the odds are still low or close to 0.