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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

#171

Post by maxbond »

chroma wrote: post #160
maxbond wrote: post #123

Earlier quoted context omitted.

It's one thing to say they should approve drugs faster and another thing to say they should rubber stamp anything that Europe and Canada approve.

It seems that if the Canadian and European regulatory bodies are incompetent or too quick to approve meds, it would show up in some statistics, right? Maybe their life expectancies would be lower or they would have higher rates of certain kinds of deaths. Yet if anything, it’s the US that lags in those areas. There are tons of examples of the FDA failing to approve things, resulting in Americans dying unnecessarily.…

Maybe part of the reason that the Canadian and UK drug regulators are competent, is because we haven't created a sufficiently large system of incentives to undermine them. Maybe if approving a drug in Canada got you access to the entire world, we would have a very different scenario.

A rubber stamping scheme removes redundancy from the system. Approving drugs faster sounds like a great idea, but there was a reason someone put up that fence you want to tear down, and your arguments haven't addressed it. Furthermore, the fence doesn't need razing to accomplish your goal - I don't see why advocating for the FDA to approve drugs faster should be synonymous with turning them into a rubber stamp.

No one (or at least not me) is contesting the assertion that approving drugs faster may save lives. But I don't want pharmaceutical companies to be able to undermine a single regulatory body and then be able to distribute their drugs everywhere.

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

#172

Post by justinclift »

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…

> In all three instances, the result was that the treatments were snake oil and people died that might have lived otherwise.

It seems like you're claiming that people who were given medical treatment after media attention weren't down to their last option(s)?

If they were down to their last options, then they made their choice and it didn't work out.

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

#173

Post by can16358p »

There should be a universal law in human rights stating anyone can take anything into their own bodies and governments can never, ever prevent them.

Governments/regulators deciding what you can put into your body is beyond ridiculous: applies to all substances and drugs.

Inform about the potential risks and effects: sure.

Prevent: never.

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

#174

Post by qbrass »

shuckles wrote: post #23
Arainach wrote: post #11

Earlier quoted context omitted.

The FDA is not bad. The world has never had a shortage of liars, scammers, or snake oil salesmen. The term snake oil itself hearkens back to salesmen who would promise "medicines" to desperate people to con them out of their money. Allowing trials to be bypassed and allowing people to pay for early access to unproven drugs would bring a flood of such be vendors and be bad for society, bad for medicine, and bad for et…

No one is advocating for "pay for access" or a means of bypassing trials that facilitate a "flood of [scammers]", so this is a straw man. You'd have to show why any design for relaxing regulation of trials is necessarily bad in aggregate. The article even cites a case where the bureaucrats are confident in the safety of a trail drug but unable to approve for political reasons. Not to mention the FDA allows plenty of…

Supplements are regulated as food products as long as the manufacturer doesn't claim they treat or cure anything. The FDA allows them for the same reason they allow fudge brownies or Spam to be sold.

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

#175

Post by [deleted] »

grrdotcloud wrote: post #166
abhaynayar wrote: post #77

I read this, and while I felt immense sadness, I will obviously move on with my life soon enough and forget about it. I wondered, if I were ever in the same situation, and someone read what I wrote before dying, they might empathize for a bit, but then they'd move on as well. I just really wish that there's something beyond death, that there's something out there, and that all the suffering and unfairness and randomn…

Wishing is one thing. Hope is the better thing. There is something beyond death. I don't know how anyone can think otherwise. Who else has the words of life?

[deleted]

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

#176

Post by sleight42 »

GuB-42 wrote: post #154
sleight42 wrote: post #110

Earlier quoted context omitted.

Just "invest more"? Who does the investing? Not "The Market". The incentive isn't to cure but to treat. The Market wants (repeat) customers. The government? At least, in the US, we've been dismantling the government's ability to do this since at least Reagan. Even our so-called Liberals aren't pushing hard here. You'd have to look to the "fringe" Progressives within the Democratic Party to even come close. And why? B…

> The incentive isn't to cure but to treat. The Market wants (repeat) customers. I am fed up with this argument. Compared to a recurring treatment, a cure will: - destroy the competing recurring treatment - sell particularly well initially, when you still have the patent, potentially at a high price - not stop the influx of repeat customers, since as long as people are alive, they will need medicine, and people who a…

Vaccines aren't a cure. They require repeat customers. You're making my argument for me.

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

#177

Post by jfk13 »

toomuchtodo wrote: post #130
yladiz wrote: post #122

Earlier quoted context omitted.

C’mon, it’s extremely disingenuous to compare abortion and contraception with untested treatment.

Assisted suicide and euthanasia are better examples. If you have autonomy to die, you should have autonomy to die trying not to.

Well, those are pretty controversial topics, so I'm not sure how much the analogy helps.

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

#178

Post by thechao »

exmadscientist wrote: post #133
riffraff wrote: post #14

Earlier quoted context omitted.

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…

To sibling commenters: immunotherapies aren't the only problem. There are a ton of truly evil companies out there pushing therapies that do not work, have never worked, and will never work, because they literally have no possible mechanism to ever do anything . This is a crime, but it's very very hard to prove. And these companies get very good at gaming the system, because that is their product. They are mechanisms…

There's a trivial well-regulated market solution: medical company A registers treatment B with the FDA; patients can try experimental B from A on A's dime: let them out their money where their medicine is.

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

#179

Post by grammers »

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…

> Even if you want the experimental treatment, you cannot get it. Killing someone in an attempt to help is deeply unethical, while merely letting them die is not your fault. This is sometimes also known as the Copenhagen interpretation of Ethics.

Most people (myself included) would not agree to that. Experimental treatment should be made possible - at least if there have been promising results with previous studies (animals, small trials etc.). There must be a safeguard, however, to make it impossible to sell false hope to dying people - because they will pay for everything, even if it does more harm than good.

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

#180

Post by skilled »

abhaynayar wrote: post #77

I read this, and while I felt immense sadness, I will obviously move on with my life soon enough and forget about it. I wondered, if I were ever in the same situation, and someone read what I wrote before dying, they might empathize for a bit, but then they'd move on as well. I just really wish that there's something beyond death, that there's something out there, and that all the suffering and unfairness and randomn…

Why’d you be so pessimistic when there’s plenty of evidence that there is.

Or are you saying that billions of Buddhists and Hinduists are delusional?

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