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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

#161

Post by hotpotamus »

nine_k wrote: post #112
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…

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.

I don't have an issue with people taking magic beans to heal themselves; it's the sellers who knowingly (whole other kettle of fish there) sell snake-oil that are the immoral ones.

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

#162

Post by haldujai »

tux3 wrote: post #128
EA-3167 wrote: post #87

Earlier quoted context omitted.

The key is that the approved treatments are proven to have the requisite efficacy, the risks that come with that are an acceptable tradeoff. The unapproved, often largely untested world of early breakthroughs doesn't have that guarantee of potential efficacy, it often JUST has risks.

It may help to not view the options as a binary choice between drugs approved under the current process and any drug not currently approved. What constitutes the acceptable tradeoff is the heart of the matter. On the one hand, even the current approval process does not always guarantee efficacy (Aduhelm to mention it by name). Medical trials work with considerable uncertainty, and the risk/benefit tradeoff is always…

I don’t understand your overall point here as this is pretty much how the current system works.

> It is possible to take those probabilities and to talk about the expected number needed to treat (NNT) for a medication, the expected side effect profile, how many people might live and how many might die.

NNT > NNH = efficacy. To calculate these the trials need to be done, which is not the case for experimental therapies as they have undetermined benefits and harms (hence why they’re in trial).

The choice here is between conventional options that have known benefits/harms, however crappy they may be, with something that has unknown values.

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

#164

Post by rdl »

I hope more and more medicine/science moves outside the reach of FDA. If someone is willing to pay for a treatment (or recreational product), and is reasonably informed/competent to decide the risks, and it's not a risk to anyone else, go for it. If someone tries to prevent consensual commerce (possibly while wearing a silly uniform or carrying a printed ID badge from a state), violate the law if on balance it's worth it to do so, and if it were literally my life at risk, I'd use whatever force required to accomplish the transaction. Hopefully treatment would be on the table before I lost the ability to run a carbine properly if needed.

Medical tourism is an excellent opportunity for "network state" and state alternatives. I already get virtually all elective medical care outside the US for commercial and service quality reasons, despite having US insurance.

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

#166

Post by grrdotcloud »

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?

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

#168

Post by balls187 »

eilertokyo wrote: post #155

Unclear to me why clinical trials seem unavailable to him, which is how he would gain access to these treatments. The major cancer centers generally will have options for his exact situation, though sometimes they require he finish conventional and salvage treatments first.

I understood your question to mean “why can’t he have access to clinical trials?”

A person has to qualify for the clinical trial by meeting a set of specific set criteria to ensure the results are interpreted with the least amount of error.

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

#169

Post by londons_explore »

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…

A simple way to stem most snake oil is to put all payments for snake oil treatments into escrow till the treatment is approved.

Then the snake oil manufacturer can peddle their unapproved treatment to as many people as they like, but they are losing money on every dose unless the treatment turns out to be safe and effective.

Obviously you need a big team of scientists on the approval panel to make sure no snake oil salesmen are faking trial data to get their payday, but that seems solvable.

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

#170

Post by bandyaboot »

pjot wrote: post #117
unglaublich wrote: post #95

Earlier quoted context omitted.

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/

It interprets telling the vehicle to crash into a barrier rather than hit pedestrians as not placing as much value on protecting passengers. But really, this is just a recognition that the passengers are far more protected in a crash than the pedestrian are when getting hit by the car. Instead of a barrier, it should be a large cliff or something.
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