Comment by taylodl
3 years ago
I understand where you're coming from, but as the parent of someone in the field of pharmaceutical research they have a different view.
First, human beings aren't Guinea pigs. Yes, the FDA is slow - for damn good reasons. We didn't use to do things this way and then we changed it to fix problems. There are reasons things are the way they are and it's very well-understood in the medical field. Medicine is not a move fast and cause pain and suffering kind of field or move fast and kill people kind of field. They're very conservative.
Two, since human beings aren't Guinea pigs when we do do experiments on them with drugs that have been through a very thorough and extensive pipeline already, they're looking for very specific things. This tends to make a very small population of patients eligible for a trial.
Three, trials are expensive. These aren't drugs that have been scaled-out in production. The costs tend to be exceedingly exorbitant. The medical field is very well aware of the inelastic demand for their services and this opens up new avenues for the unscrupulous to prey on people. Like the used to do in the "good ol' days."
Finally, the fact the treatment you would like to pursue is still "stuck" in clinical trials is indicative they're not convinced of the efficacy of the treatment. I can tell you lots of "promising" treatments never make it out of clinical trials. That's the nature of the beast. Most ideas are dead-ends.
My advice? Don't chase unicorns. Sadly, I've watched too many people in my family die while chasing unicorns and getting obsessed with treatments that are in trial. There are always treatments in trial. Live your life and enjoy what time you have to the fullest.
> First, human beings aren't Guinea pigs. Yes, the FDA is slow - for damn good reasons. We didn't use to do things this way and then we changed it to fix problems. There are reasons things are the way they are and it's very well-understood in the medical field. Medicine is not a move fast and cause pain and suffering kind of field or move fast and kill people kind of field. They're very conservative.
The problem with this is that they don't appear to be optimizing for the minimization of harm, which seems very obviously to be what they should be optimizing for. Instead, they're optimizing for the minimization of harm caused by new drugs/treatments/etc., while ignoring the harm caused by disease. It's all well and good to not cause suffering through your actions, but suffering caused by inaction (or slow action) is still very much suffering that's caused by your decisions.
> Instead, they're optimizing for the minimization of harm caused by new drugs/treatments/etc.
Of course they are. From an ethics standpoint they're responsible for the harm caused to you by new drugs/treatments/etc. They're not ethically (or legally - but that's another matter) for nature harming you via the ravages of disease. If you're familiar with the education of anyone in a medical or medical-related environment then you know it's pounded in their heads to do no harm. Medical intervention is to ameliorate, not deteriorate. Medical intervention is not prescribed if it's not known to heal. That's when palliative care is called for.
I will say it again - human beings are not Guinea pigs, especially when they're dying.
> From an ethics standpoint they're responsible for the harm caused to you by new drugs/treatments/etc.
I would argue that from an ethics standpoint they're responsible for the results of their decisions. If they hold a treatment up for an extended period of time because it might have some complications, but with the benefit of hindsight it is clear that it would have saved lots of people who instead died, they bear some responsibility for those deaths.
> If you're familiar with the education of anyone in a medical or medical-related environment then you know it's pounded in their heads to do no harm.
As it should be, but the point is that harm can be done by inaction, not just by action.
The counter to this is Sam Pelzmann's "Regulation of Pharmaceutical Innovation" https://www.amazon.com/Regulation-Pharmaceutical-Innovation-...
where he shows, with statistics, that moving fast saves more lives than it costs.
Given all the human pain and suffering economists have wrought may I suggest we insist they stay in their own wheelhouse? Also, it's easy to look back, with statistics, and say had we approved a successful drug/treatment earlier then we could have saved lives. That's survivor bias as it ignores all the treatments that were found to be ineffective or worse and what those effects would have been had they been administered to a wider group earlier.
The book deals with that, specifically. It does not ignore treatments found to be ineffective or worse.
My advice to you is that if that's your view, don't take advanced drugs, but get out of my way if I want or need to, and get out of the way of others. You can pursue your path and I will pursue mine.
They say someone who represents themselves in court has a fool for a lawyer. My experience, purely anecdotal by definition, is someone who practices medicine on themselves has a fool for a doctor. I've seen too many people die faster by bucking modern medical practices. But sure. Feel free. Knock yourself out, especially since you know more than the entirety of the medical establishment.