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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

#181

Post by hotpotamus »

can16358p wrote: post #173

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.

I mean, fentanyl? Obviously it's a whole subject that could be unrolled/debated, but I don't have any interest in doing that today. Really, I thought I'd just point out one interesting and often unknown aspects of US/State law (assuming this is mostly a US-based forum; I know you said universal human right) - taking drugs isn't a crime anywhere that I'm aware of. Possession of them certainly is, but just having taken them is not.

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

#182

Post by themitigating »

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…

This is a crime, but it's very very hard to prove

Then how do you know it's prevalent?

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

#183

Post by balls187 »

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…

FDA doesn’t regulate supplements as medication but food; however Federal consumer protection laws prevent making false claims.

I imagine allowing terminal non-trial participants access is more than just regulatory red-tape.

If understood one of the authors points it was that allowing non-candidates access could speed up approval. I think that is true, but that would require the same regimented process for administering the trial to ensure quality of data. The same would hold if there was an adverse event as well—patients need to be monitored closely to capture data to provide valuable to the clinical research results.

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

#184

Post by fnord77 »

throw9away6 wrote: post #81
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’m fine with that as long as insurance does not pay for any drugs without efficacy testing. Also no advertising of any sort.

insurance already gets away with not paying for some highly efficacious drugs, so I don't think this will be a problem

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

#185

Post by chroma »

maxbond wrote: post #171
chroma wrote: post #160

Earlier quoted context omitted.

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 so…

There is no reason because it wasn’t a deliberate choice. Different countries created their own standards bodies and didn’t try to coordinate until later. The same thing happened with safety regulations around automobiles and aircraft. Fortunately in those cases, most countries have coordinated and manufacturers can sell the same vehicle in different countries with little extra effort. But for rare diseases with cheap treatments (such as in the case of Omegaven), nobody has the both the resources and the desire to overcome the FDA’s bureaucratic hurdles.

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

#186

Post by jfk13 »

valine wrote: post #125
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…

Just because a treatment doesn’t work doesn’t make it snake oil. Snake oil implies intent to deceive. Untested drugs can be based on a strong theoretical foundation and still not work. I expect the majority of experimental treatments won’t work. We should be trying regardless, not just for the sake of the people taking the treatment, but for the countless people in the future who can benefit from the same treatment w…

And how do we assess whether "someone understands the risk"? Often, I suspect nobody really "understands" the risk of some minimally-tested, experimental treatment.

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

#187

Post by lucianbr »

dionidium wrote: post #156
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…

> 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 options want those too, because nobody wants to go through chemotherapy or whatever. I reserve for myself the right to try to save my own life, even if that means some people who can't handle that responsibility make things worse for themselves. I can't get from, "but other…

You say this now, but after your son, sister or mother dies after choosing snake oil, you will likely not say "I accept that they chose wrong and that's all there is to it". You will cry bloody murder and blame the system that didn't protect them from the snake oil salesmen, and demand that something be done.

Well, I of course don't know what you personally would do. But some people would do this, and it turns out, actually a lot of the people in that situation would do that. And so something gets done.

This is the same thing as crypto, people "reserving the right to take risks with their own money", and after the money is lost asking why the government didn't protect them. And the same as many other things. Humans suck at accepting the consequences of their own choices.

Nobody has a fetish of taking your choice away from you. People ask for things to be this way, because people are just human.

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

#188

Post by can16358p »

baggy_trough wrote: post #52
strangescript wrote: post #39

There is no 100% correct answer here. As soon as you speed up the process, there are still going to be people that just miss out, and then we will have people saying 4 months is too long, it should take 2 months, or let AI approve it, etc. Desperation skews perspective. The issue with having a standardized approach to people getting experimental drugs is it opens up its own kind of mini-market unless the implication…

[flagged]

Couldn't agree more. There is literally nothing to lose, and potential to save a life.

Blocking this is effectively murder.

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