Comment by somenameforme
4 days ago
This may be a philosophical point of view, but I do not see much personal value in clinical trials. You're banking on there being a significant shift in technology/knowledge that occurs right between the time you are diagnosed and the time you have left to treat it. Just as a Bayesian probability, it's extremely unlikely to be the case.
Most studies that which reach stage 3 will not be approved, and that's because they're found to to be unhelpful or even harmful. So the most likely scenario is you do nothing or even hurt yourself by seeking out clinical studies, all of which will be optimistically framed as promising and potentially revolutionary. This can be particularly dangerous if you're opting into a trial in lieu of the standard treatment, as opposed to in addition to such.
> You're banking on there being a significant shift in technology/knowledge that occurs right between the time you are diagnosed and the time you have left to treat it. Just as a Bayesian probability, it's extremely unlikely to be the case.
The probability that I think you're talking about here is not actually relevant, given that the trial is already underway. Basically, the "potential advance" event has already happened. (Similarly, the probability of getting shot by an arrow is not relevant once the arrow's already poking out of your body.)
Given the trial is already underway, the probability that matters is the fraction of treatment candidates at the phase you are considering that make it all the way through; for phase 3 trials, this is 58-65% [0], which is actually pretty good. Of course, rates for earlier phases are much worse because there's attrition at each phase.
0: https://patentpc.com/blog/clinical-trial-success-rates-how-m...
A treatment being approved doesn't mean it's more effective than existing treatments, only that it is effective. And even then, not always as in the case of the controversial Alzheimer's drugs. Looking up some exact numbers on this, for oncology/cancer about 35% of treatments at stage 3 trials will end up approved/produced. [1] This [2] study looked at the 632 medicines approved (in the French market) and found that 25 ended up providing a substantial clinical benefit relative to existing treatments, so a bit under 4%. Even with just those two multipliers you're looking at around a 1% chance of the outcome most people are aiming for with trials.
[1] - https://academic.oup.com/biostatistics/article/20/2/273/4817...
[2] - https://pmc.ncbi.nlm.nih.gov/articles/PMC10660249/
That’s definitely one way to look at it.
I would just say that ‘dangerous’ is relative and when the standard of care leaves effectively no hope, your tolerance for risk can change. Yes this does increase that chance of shortsighted decisions or manipulation. That just comes with the territory, I’m still very appreciative that we have the option to elect to participate in the peocess.
The bigger problem with trials is not the danger, so much as the fact that they're unlikely to do anything.
As GP noted, most drugs don't work. To make it a bit more specific, even in phase 3, the failure rate for cancer drugs is something like 50%. And that's typically for some non-survival endpoint (assuming you even get the treatment, which is itself a coin flip).
Clinical trials are noble, admirable things to do, but too many people think of them as treatments, when they really are not. They're an experiment that you do with your body when you reach the end of the road and there are no more options.
It always makes me a little sad to hear how patients talk about trials and fight to get into them, as if being in the trial is somehow progress. Expectations are not being managed properly.
>The bigger problem with trials is not the danger, so much as the fact that they're unlikely to do anything.
And? What is the point of this observation? Of course they are unlikely to do anything. Your other option is to do nothing and die. Nothing wrong with that if that's what people choose to do...'accept their fate' and all that. I'm not opposed to it at all, there's a certain appeal to it.
But when your wife and the mother of your two beautiful daughters is laying helpless on nature's altar you fucking move dude. You don't do nothing.
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I lost somone to a rare cancer with almost zero chance of survival. A treatment with 65% success was available 30 days after they died. Ill always wonder if things could have been different. Maybe if we looked harder for trials but like you we thought it a hopeless waste of the limited time left.
I’m sorry for your loss. Words from an internet rando don’t mean much, but you did the best that you could so don’t worry about what ifs. Do your best right now.
What do people in those 65% actually experience? Long cancer-free life?
The standard benchmark is five years without recurrence. That plus any side effects of the treatment, surgeries, etc
I think because trials take so long, the probability might be higher than you say.
All ground-breaking treatments/therapies were initially only available as a clinical trial.