4 ms·

Trump wanted to introduce “right to try”, which I think is a great idea. Got shut down in Congress. Don’t recall why.

tonysdg 8y ago
IIRC, part of the argument against is that you're allowing biotech/pharma companies to test on vulnerable populations. Here's a story on NPR about the pros and cons: https://www.npr.org/sections/health-shots/2017/03/03/517796956/patients-demand-the-right-to-try-experimental-drugs-but-costs-can-be-steep https://www.npr.org/sections/health-shots/2017/03/03/5177969...
- throwaway84742 8y ago
  Sure, that’s inextricably a part of the deal. Don’t sign on the dotted line if you’re uneasy about it. As long as nobody is forcing you to do it, I don’t have a problem. The situation where I can try things (at my discretion) is strictly better than the one where i unconditionally die.
  - lallysingh 8y ago
    The information asymmetry is a real problem.
    - throwaway84742 8y ago
      Is it more of a problem than definitely dying, though? That’s the real question here.
  - mcguire 8y ago
    1. You unconditionally die in extreme agony. 2. You weren't dying before, but you are now. 3. Not dying, but the extreme agony is back. 4. Still not dying and no pain, but you now look like one of the aliens from Close Encounters. Career choices are limited. ...
  - leggomylibro 8y ago
    >Sure, that’s inextricably a part of the deal. Don’t sign on the dotted line if you’re uneasy about it. Well that does sound like a good reason for Congress not to sign on the dotted line, given the definition of 'it'.
tptacek 8y ago
That refers to access to drugs that have passed Phase 1 safety trials. The study here wasn't close to that.
olliej 8y ago
Many reasons - there are plenty of quacks who already con people - people who do actually believe their product works, but it doesn’t - things that may work but also may kill you (remember that drug trial in London a few years ago that had got through all pre-human trials without a problem?) - placebo is real, and the pre-approval access ideas generally are a pay-to-play concept, and I’m not sure people would want to pay for a blinded treatment - people talking about these trials always seem to say “once basic safety tests are done”, but phase 1 and 2 are the basic safety tests. Phase 3 require enough people that drug companies are often actively working to find participants. The real problem here is that universities etc keep posting hyperbolic articles saying “we have found something that may cure X”, with the rider for studies and fda approval are necessary. Laypeople interpret that as meaning the fda approval is preventing them from accepting patients for approval, when typically the component in question is not remotely close to a treatment: - it’s just binding to a target invitro. -There’s no information on what happens one it has bound. - there’s no evidence it can even get to the target invivo anyway - animal trials are only advisory. There have been many super effective drugs and vaccines that have no effect in humans - can the get past the immune system? Will the immune response kill a person - I’ve seen articles about compounds that would (and turn out to be) toxic Etc etc But all a patient sees is the “may cure X” bit and so demands a right to use the drug. That’s why these things are a bad idea
- jamessb 8y ago
  > that drug trial in London a few years ago that had got through all pre-human trials without a problem I asusme you mean the TGN1412 trial [1,2]. [1]: https://en.wikipedia.org/wiki/Theralizumab https://en.wikipedia.org/wiki/Theralizumab [2]: https://www.nejm.org/doi/full/10.1056/NEJMoa063842 https://www.nejm.org/doi/full/10.1056/NEJMoa063842

IIRC, part of the argument against is that you're allowing biotech/pharma companies to test on vulnerable populations. Here's a story on NPR about the pros and cons: https://www.npr.org/sections/health-shots/2017/03/03/517796956/patients-demand-the-right-to-try-experimental-drugs-but-costs-can-be-steep https://www.npr.org/sections/health-shots/2017/03/03/5177969...

throwaway84742 8y ago
Sure, that’s inextricably a part of the deal. Don’t sign on the dotted line if you’re uneasy about it. As long as nobody is forcing you to do it, I don’t have a problem. The situation where I can try things (at my discretion) is strictly better than the one where i unconditionally die.
- lallysingh 8y ago
  The information asymmetry is a real problem.
  - throwaway84742 8y ago
    Is it more of a problem than definitely dying, though? That’s the real question here.
- mcguire 8y ago
  1. You unconditionally die in extreme agony. 2. You weren't dying before, but you are now. 3. Not dying, but the extreme agony is back. 4. Still not dying and no pain, but you now look like one of the aliens from Close Encounters. Career choices are limited. ...
- leggomylibro 8y ago
  >Sure, that’s inextricably a part of the deal. Don’t sign on the dotted line if you’re uneasy about it. Well that does sound like a good reason for Congress not to sign on the dotted line, given the definition of 'it'.

tptacek 8y ago

That refers to access to drugs that have passed Phase 1 safety trials. The study here wasn't close to that.

olliej 8y ago

Many reasons - there are plenty of quacks who already con people - people who do actually believe their product works, but it doesn’t - things that may work but also may kill you (remember that drug trial in London a few years ago that had got through all pre-human trials without a problem?) - placebo is real, and the pre-approval access ideas generally are a pay-to-play concept, and I’m not sure people would want to pay for a blinded treatment - people talking about these trials always seem to say “once basic safety tests are done”, but phase 1 and 2 are the basic safety tests. Phase 3 require enough people that drug companies are often actively working to find participants. The real problem here is that universities etc keep posting hyperbolic articles saying “we have found something that may cure X”, with the rider for studies and fda approval are necessary. Laypeople interpret that as meaning the fda approval is preventing them from accepting patients for approval, when typically the component in question is not remotely close to a treatment: - it’s just binding to a target invitro. -There’s no information on what happens one it has bound. - there’s no evidence it can even get to the target invivo anyway - animal trials are only advisory. There have been many super effective drugs and vaccines that have no effect in humans - can the get past the immune system? Will the immune response kill a person - I’ve seen articles about compounds that would (and turn out to be) toxic Etc etc But all a patient sees is the “may cure X” bit and so demands a right to use the drug. That’s why these things are a bad idea

jamessb 8y ago
> that drug trial in London a few years ago that had got through all pre-human trials without a problem I asusme you mean the TGN1412 trial [1,2]. [1]: https://en.wikipedia.org/wiki/Theralizumab https://en.wikipedia.org/wiki/Theralizumab [2]: https://www.nejm.org/doi/full/10.1056/NEJMoa063842 https://www.nejm.org/doi/full/10.1056/NEJMoa063842