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I am dying of squamous cell carcinoma, and potential treatments are out of reach

jakeseliger.com

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Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#111

Post by stared »

tux3 wrote: post #3

There seems to be a growing sentiment that FDA delenda est , but if we don't fix the underlying problem that led to this situation, it will just come back. As the author says, no one ever blames the FDA for the people it failed to save. But approve something without the certainty that it isn't potentially going to kill someone, and there will be hell to your doorstep. Even if you want the experimental treatment, you…

I call it Pontius Pilate's Ethics.

It is (a very rational) approach for administrative workers, who get little credit for getting things better, but are at risk when they can be taken accountable for something terrible.

That way, for example, in Germany, there was a halt on the Astra-Zeneca vaccine after a few cases of thrombosis per million. For comparison, it is one in six for COVID. The halt, most likely, caused many deaths. Yet, these deaths "have happened". If there were a death because an administrative organ didn't take action - the organ would be considered responsible.

For the matter, Pontius Pilate was an administrative worker. And his incentives were aligned accordingly.

In the language of the Trolley Problem, it is doing nothing (no matter how many are there on the tracks) or (even better) finding a way to pass the lever to someone else.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#112

Post by nine_k »

riffraff wrote: post #14
tux3 wrote: post #3

There seems to be a growing sentiment that FDA delenda est , but if we don't fix the underlying problem that led to this situation, it will just come back. As the author says, no one ever blames the FDA for the people it failed to save. But approve something without the certainty that it isn't potentially going to kill someone, and there will be hell to your doorstep. Even if you want the experimental treatment, you…

I remember at least three instances in my country where the authorities were forced to allow people to use experimental treatments due to media clamor. In all three instances, the result was that the treatments were snake oil and people died that might have lived otherwise. It's easy to say "people who have no other options should get access to experimental treatments" but the problem is that people who have other op…

I'd say that people should be allowed to try whatever treatments they agree to have, in order to save their lives, and also in other cases. One cannot say with a straight face that a woman has sovereignty over her body and thus contraception and abortions should not be banned, and preclude that same woman from getting a treatment that can possibly save her life but has not been approved yet.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#113

Post by chroma »

maxbond wrote: post #59
chroma wrote: post #41

Earlier quoted context omitted.

But that’s the problem. No regulatory body has perfect judgement, so they’ll all approve some harmful things and ban some helpful things. If you’re so strict that you don’t allow thalidomide, you’ll also ban stuff like beta blockers for an extra decade, causing 80,000 deaths. The argument in favor of loosening restrictions is that it would reduce overall death and suffering.

If you think the fact that thalidomide, a deadly and basically worthless medication, being successfully blocked by the FDA is an example of a problem, then I'm a bit baffled? If you think that regulatory bodies make mistakes - then surely you want them checking each other's work? It's very frustrating to feel you are dying just shy of a breakthrough that can save you. I get that. And the author's contention, that the…

I’m saying that the FDA’s strictness cuts both ways. My beta blocker example was not a hypothetical.

Europe approved the use of beta blockers to prevent heart attacks a decade before the US. Although the FDA approved propranolol in the 1960s, and timolol for glaucoma in 1978, they didn’t approve beta blockers for prevention of second heart attacks until the 1980s. This resulted in the deaths of over 80,000 Americans. Amusingly the New York Times article about this approval brags about how many people will be helped by the previously-banned medicine.[1] Nowhere is it pointed out that so many more people could have been saved if the FDA fast-tracked drugs approved in Europe.

1. https://www.nytimes.com/1982/02/02/science/new-class-of-drug...

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#114

Post by Kamq »

tux3 wrote: post #3

There seems to be a growing sentiment that FDA delenda est , but if we don't fix the underlying problem that led to this situation, it will just come back. As the author says, no one ever blames the FDA for the people it failed to save. But approve something without the certainty that it isn't potentially going to kill someone, and there will be hell to your doorstep. Even if you want the experimental treatment, you…

I still think they need another category than what they have now.

My understanding of the current categories of drugs are you have "banned" and "has this specific therapeutic effect that costs billions of dollars to prove".

A category of "this doesn't kill you" in the middle would probably alleviate most of this. Insurance only has to pay for things with proven therapeutic effects, but you can shield people from poison and get a lot more data way cheaper by having his middle category.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#115

Post by rebeccaskinner »

A_D_E_P_T wrote: post #72

There's a very easy regulatory solution: Roll the drug approval process back to the way things were done prior to 1962. Back then, safety testing was all that was required. Efficacy testing -- which is difficult, expensive, arguably unethical in itself, and in some cases effectively impossible -- was not required. Drugs cost ~20-50x less to bring to market, and were brought to market faster. Indeed the 40s and 50s ar…

I do think that people should have options, especially when there aren't effective treatments, but it's not exactly simple. In most cases, any treatment you pick has the opportunity cost of other treatments, and for life threatening diseases that opportunity cost might be living. Very few, if any, patients are going to be in a position where they can legitimately evaluate the effectiveness of treatments. In most cases, I don't expect health care providers will be in the position to do that either- even most specialists will be treating a wide variety of conditions, and may have relatively little experience with unusual diseases. Even in the best case, this is assuming that drug companies would actually try to make effective drugs rather than looking for other avenues to sell ineffective drugs (or drugs that were only accidentally effective)- I don't that in today's environment that's at all a reasonable assumption. Ultimately, the information asymmetry is vastly weighted in favor of the drug companies, and the cost is lives.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#116

Post by sleight42 »

aantix wrote: post #89
tux3 wrote: post #3

There seems to be a growing sentiment that FDA delenda est , but if we don't fix the underlying problem that led to this situation, it will just come back. As the author says, no one ever blames the FDA for the people it failed to save. But approve something without the certainty that it isn't potentially going to kill someone, and there will be hell to your doorstep. Even if you want the experimental treatment, you…

There's this overabundance of the need for safety that's overcome society. It's as if we can't assess tradeoffs anymore. You see it with the lack of children playing outside - even though random kidnappings are almost a nil risk and that they're more likely to get by a car. Defective toys. Defective carseats. Millions get recalled for a failed few. You saw it with masks. You see it with speech, "words are violence".…

You had me to a point. And then you began the usual conservative dog whistles.

"Words are violence"? If you were dox'd, would that be violence? Or your life threatened? Or those you love? Or just people who look or love like you? Where is the line? Wherever you personally believe it should be? No.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#117

Post by pjot »

unglaublich wrote: post #95
chroma wrote: post #34

Earlier quoted context omitted.

For those who are curious, the term was coined on this blog post[1]: > The Copenhagen Interpretation of quantum mechanics says that you can have a particle spinning clockwise and counterclockwise at the same time – until you look at it, at which point it definitely becomes one or the other. The theory claims that observing reality fundamentally changes it. > The Copenhagen Interpretation of Ethics says that when you…

So, you would flip the railroad switch to kill only 1 instead of 5 helpless people?

MIT recreated this thought experiment to research the “morality” in autonomous vehicles.

https://www.moralmachine.net/

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#118

Post by rediguanayum »

(not an MD) The FDA does allow for compassionate use of experimental drugs. My understanding the many early stage drugs are tested this way, but access is limited to trial centers. The author should try search drug trials database to see there's a group that is recruiting: https://classic.clinicaltrials.gov/ct2/results?cond=Head+Nec... My brother is a physician who is working with patients in drug trials. He had the very good fortune to see an experimental drug successfully treat a very sick, critical patient who was declared a candidate for "compassionate use".

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#119

Post by peyton »

zaroth wrote: post #99
adrr wrote: post #50

Earlier quoted context omitted.

You can get get experimental drugs/treatments that aren’t approved by getting them under the clinical trial for that drug. The question is who pays for it? Cancer treatments are millions of dollars.

Clinical trials are, I think always , free for the patient. The company developing the drug foots the bill.

That’s just not true.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#120

Post by dannyobrien »

riffraff wrote: post #14
tux3 wrote: post #3

There seems to be a growing sentiment that FDA delenda est , but if we don't fix the underlying problem that led to this situation, it will just come back. As the author says, no one ever blames the FDA for the people it failed to save. But approve something without the certainty that it isn't potentially going to kill someone, and there will be hell to your doorstep. Even if you want the experimental treatment, you…

I remember at least three instances in my country where the authorities were forced to allow people to use experimental treatments due to media clamor. In all three instances, the result was that the treatments were snake oil and people died that might have lived otherwise. It's easy to say "people who have no other options should get access to experimental treatments" but the problem is that people who have other op…

Maybe the fact that these are the ones you remember is an indication of the problem, rather than evidence that it is wrong.
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