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> I’m wondering what the odds are that people will pivot from “it’s experimental” to “it was rushed due to politics/greed”.

Or maybe just stick with the fact that it isn't very effective. [1]

[1] https://www.medrxiv.org/content/10.1101/2021.08.06.21261707v...



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> How could we research if the approval was politically motivated?

The analysis of the clinical trial was published in a very reputable and peer reviewed scientific journal [1,2].

> How can I know if this is actually safe?

In the reports [1,2].

If you believe that data is fake then I am afraid you just not want to be convinced.

[1] https://www.nature.com/articles/s41586-020-2622-0 [2] https://pubmed.ncbi.nlm.nih.gov/32991794/


> this is a non-starter from an economic reality perspective so I'm not too worried about it

Still dangerous. It reminds me of Zubrin’s takedown of VASIMR [1]. An unrealistic counterproposal can torpedo a workable one by appealing to peoples’ tendency to choose the perfect over the good.

[1] https://youtu.be/myYs4DCCZts?si=Ksqw_MFLKHKIgMod


> The FDA killed during the pandemic: https://moreisdifferent.blog/p/fda-devastation-during-the-pa... and continues to kill today.

There are potential trade-offs where experimental treatments which fail preclude other experimental treatments that work. Ethically this is a minefield. Personally I agree that if I have a disease I'd want to take any experimental treatment that seemed like a good idea.

I think people's action during the pandemic are a bit more responsible for additional deaths than were FDA delays.

: Rapid tests are actually quite sensitive during days ~2-4 of illness when patients are most infectious.

Was this known beforehand, or only discovered post-hoc?

From your blog:

> Regarding drugs, particularly drugs for people who are already effectively dead, like me, we should be moving closer to a surgical model.

This seems like a good idea. Though there have been some really bad surgical interventions (lobotomy, sex assignment surgery for intersex conditions or botched circumcisions).


> One could make a pretty good argument that a government funded drug research system would end up with more expensive drugs (in the form of higher taxes) than a for profit system

Please, do.

Meanwhile: https://news.ycombinator.com/item?id=19264699


> Guess I get less optimistic about this sort of stuff considering the study was funded by Abbott, the company that makes the device.

In the US, the clinical trials are funded by the company that made the product. The way they did the trial is https://www.nejm.org/doi/suppl/10.1056/NEJMoa1806640/suppl_f... and it includes quite a lot of independent entities.

[edit] Table S19 is a bit interesting


For context, this is from November 2020:

https://www.cnbc.com/2020/11/06/biogen-suffers-setback-after...

Patient advocacy groups were pushing for approval pretty strongly. From the article:

>In a letter sent to the FDA ahead of the meeting, the Alzheimer’s Association said the publicly released data so far “justifies approval accompanied by a Phase 4 post-marketing surveillance study.”

“The alternative, requiring completion of an additional Phase 3 trial, would deny broad access up to four years while it is completed. A four-year delay is too long to wait for millions of Americans facing a progressive, fatal disease. A four-year delay is too long to wait for millions of American caregivers,” the organization said.

I have a family member who suffers from Alzheimer's, and it's a devastating disease. She's progressed too far for this drug, whether it works or not. But I can understand the desire for all the patients/families that still have some hope to have something, even if there's only a small chance it would work. On the other hand, if the FDA begins approving drugs not backed up by data, then it opens up the flood gates for all kinds of snake oil. It's a pretty tough call.


> much rather have the information in front of me so I can evaluate it and make my own determinations

This is the danger. Most people, myself included, are not qualified to make that determination alone. In this case, as expected, it looks like it was crap [1][2].

I'm not arguing in any way for censoring anything. But there is legitimate danger when people, often desperate, compare legitimate medical research, which will be subdued, with quackery, which will be ostentatious, and then, worst case, reject the actual medicine or hurt themselves trying to administer rogue therapies.

[1] https://news.ycombinator.com/item?id=35771376

[2] https://news.ycombinator.com/item?id=35771048


> They've studied it enough to know that it doesn't have any appreciable effect.

Well results seem conflicted on this. This very study (the one linked here!, ie[1]) shows a significant result.

It's an observational study, but that is a normal part of the scientific process during medical research.

There are plenty of other studies showing no result. But this is hardly the only one showing positive results.

So I don't think the science is settled on this (and it would be astonishing if it was in the 4 months since this process started!). I think Trump's behaviour on this has been atrocious and has caused harm, but that doesn't mean anything regarding if it works or not.

[1] https://www.sciencedirect.com/science/article/pii/S092485792...


> We also basically have no treatment

Not so:

https://www.cancernetwork.com/news/clinical-trial-explores-a...

Edit: Besides, what if the cure already exists, and Big Pharma wants to make more money selling long-term treatment drugs and equipment?


>Why 5 years? Why not 1? Why not 50? What's so special to people about 5 years?

Clinical trials are conducted over many years (rather than just 1) for historical safety reasons[1]

>There is a faction of fools out there who resist being a part of society, but claim all of its privileges. These are sub-human individuals

This is hate speech, especially considering the disproportionate rates of black and hispanic people who are unvaccinated.

[1]https://www.brightfocus.org/clinical-trials/how-clinical-tri...


> The major issue with this paper and this protocol is that it is not reproducible.

Sorry, such claim is a pure bullshit. It is reproducible, even the parts of the suggested treatment lead to significant improvements in quality of life for affected patients.

What we have here is: 1) the paper has some claims 2) it has weak theoretical coverage 3) it does not perform orthogonal hypothesis validation (validating each parameter in isolation) 4) the size of trial is small

Plus some political plays between scientific society participants.

But it is far from non-reproducible. There are a few people in the field who had big successes with similar therapies. (Dr. Derrick Lonsdale)


> "although I'm not sure what point you're trying to make still."

I'm countering the claim "even naysayers will want this as soon as it works" with evidence that people don't want things which work - for multiple reasons, viz. known side effects, unknown/long term side effects, your 'implying a lifestyle change', not wanting to be early adopters, for examples we have covered, along with people who don't want to 'play God', don't approve of medical treatments, don't want 200 years of working life (as mentioned in the comments elsewhere on this thread).


> Try running a public beta on some cancer drugs and see how far you get.

1) This isn't a public beta.

2) If cancer drugs WEREN'T tested before being sold, I would be far more worried.


Some context: This article was a satirical commentary on the situation in evidence-based medicine where the absence of large double-blind placebo-controlled randomized controlled trials was equated with an absence of efficacy, for example it would be completely unethical to do a placebo controlled trial of penicillin as a treatment for infection as patients would have to die to prove that it worked.

> if there is already a drug that cures 75% of cancers and a new drug cures 85%, a clinical trial to detect that 10% difference will require a lot more people (and cost a lot more money).

That makes sense. Thank you.

> Additionally cost-efficiency is not a valid reason to allow a new drug (according to the FDA), you've got to be better than the last one.

Really? I did not know that. On the face of it, that seems absurd. If Treatment A cures at a 75% rate and costs $1M and Treatment B cures at a 72% rate (worse) and costs $10, it seems as if it would still be valuable to the market, no? Or am I mis-reading you?


> Why?

Did you read this ?

> where billions are spent developing a drug and getting it approved


>Is the R&D largely based in the US?

As far as I understand it, yes. http://www.xconomy.com/seattle/2014/09/02/which-countries-ex...

As far as your claim about most drugs being a scam, I can't speak to that as I'm not familiar enough with the industry.


>it if the worse case scenario turns out to be true: this treatment does in fact work, and was stalled or prevented due to politics.

There are two worst case scenarios here - Firstly, politicians pushing unproven drugs on the general population, causing unnecessary deaths. Secondly, treatments which may have some efficacy being abandoned because of a reaction against those politicians, potentially causing a failure to bring an effective treatment to bear.

Both of these can be true at the same time.


> to buy a few patients 6 more months to live.

More like two weeks, and with a lot of painful side effects.

https://www.bmj.com/content/357/bmj.j2097

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