The author seems to forget that entering a trial doesn't necessarily give you access to the treatment. You have as many chances to be in the control group receiving a placebo.
And as bad, sad and frustrating as it sounds to someone in a desperate situation, it is for the greater good of many more human beings, protecting us from snake oil.
Right now he has a 0% chance of survival. If the experimental treatment is at all effective, the probability of not being in the control group multiplied by the probability of effective treatment is greater than 0%.
The probability of a more painful death is also greater than 0%. So it the probability that something could go wrong and cause publicity which would interfere with the testing or approval of the drug and affect other people's access in the future*. There are always tradeoffs.
*this person takes the drug. Two days later they die of a heart attack. Was it caused by the drug? How many resources should be spent to determine that? Should that death be listed in the potential side effects? What if the news story publishes an article and scares people off from the trial? What if it's later proven that the drug had no effect on the heart attack but the distraction from it delayed 10,000 people's access to the drug?
> The author seems to forget that entering a trial doesn't necessarily give you access to the treatment. You have as many chances to be in the control group receiving a placebo.
This is untrue, in this case.
Typically, only some phase 2 and phase 3 trials are randomised; the treatments that the author refers to are at an earlier stage of development and so not in either of these phases. All patients will receive the active therapy.
It's also worth noting that for cancer trials, while new treatments in these later phases may be tested against a placebo, it's never just a placebo - that would be unethical. If the new treatment is an add-on to an existing standard-of-care treatment, then they'll receive the standard-of-care treatment in the placebo group. If it's not an add-on, then it will be tested directly against the standard-of-care. If there isn't an established SoC, it can sometimes be approved without a randomised trial, if the results are good enough.
To note, the placebo group is typically getting the best current existing treatment. Rather than nothing. Although in some cases the best treatment is still nothing, which sucks.
It is against medical ethics for the placebo not to be the current standard of care, and experimentally it must be… If you can’t beat the current standard of care then your drug isn’t effective.
The greater good argument is repugnant in this case. He is going to die, and deserves an opportunity to do whatever is possible to save himself, including new and little-tested, and likely ineffective treatments. He literally had nothings to lose.
And in this case he would be actively helping humanity as well by being a test case. We would all gain knowledges and information from his treatment, if he could get it.
And as bad, sad and frustrating as it sounds to someone in a desperate situation, it is for the greater good of many more human beings, protecting us from snake oil.