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Comment by arcticbull | Hacker News Reader

The counter-argument is "how many more would die if we just let desperate people yolo on themselves." Which brings us back to the current compromise solutions.

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We probably should let them if they’ve exhausted other options right?

Let them what? Enroll in a clinical trial? Buy drugs from some website?

Get a PhD to try and cure their own disease?

https://www.wired.com/story/sleep-no-more-crusade-genetic-ki...

I believe the main point is to allow the patient to choose from a set of treatments. Correct me if I’m wrong, but isn’t this already happening at some level, where patients receive treatments that are in advanced stages of drug trials?

I imagine there could be other options available, and many times the issues are related to logistics, bureaucracy, and corruption. For instance, many people around the world go hungry due to logistical challenges (e.g., political interference) [1].

It seems we accept the status quo, while some companies are sending cheaper spacecraft into space.

[1] https://www.reddit.com/r/NoStupidQuestions/comments/zye4gm/w...

People can enroll in clinical trials.

https://clinicaltrials.gov/

That page is for information, not for enrolling.

Each study tells if they are recruiting.

Then you can drill down and see locations where they are recruiting. For example,

https://clinicaltrials.gov/study/NCT05855200?locStr=New%20Yo...

Health care is not a farmer’s market. You don’t pick from ten different kinds of potatoes. There will be tons of people with magic treatments with no statistical evidence or even fraudulent data. Snake oil, literally. Net negative for society.

Sure, but when someone reaches the final stages of life, the logic shifts. This is similar to the debate around euthanasia: do individuals have the right to end their lives or choose alternative treatments, even without strong statistical backing? Your comment also raises another important question: does the "net negative for society" truly matter in these cases? That's a political perspective, and like euthanasia, it's subject to debate.

I respectfully disagree. Selling desperate people fraudulent stuff for real money will never not be net negative for society in my view.

I am firmly against selling fraudulent products to people, but I also believe there are ways to introduce unconventional treatments, like those from an 'irreverent Dr. House.'. I think regulations should evolve to keep pace with the acceleration of science, as seen when the COVID vaccine was developed swiftly in response to urgent needs.

I think the main worry is scam artists who essentially pray on desperate people with "cures" that do nothing at best and shorten their lives at worse.

I'm fine with letting people try whatever they want if there are no other options (their life, although informed consent is tricky) however i dont think we should allow marketing such things to patients or allow anyone making money off it.

Exactly. They should be able to take whatever experimental drugs might be available.

The problem is, how do companies identify these patients or how do patients identify these companies without leaving room for massive abuse.

Maybe the treatments have to be zero cost? That feels like it would eliminate all bad actors?

That’s actually kinda a great idea imo

There are already plenty of people who promote scam cures. We shouldn't deny potentially useful treatments to patients in dire need just to reduce somewhat the business of scammers.

Detect and punish scammers if they are an issue. Allow people to take risky medical treatments if they have serious incurable illnesses.

You're not adding money to the mix.

If a company or research group wants to sponsor an experimental treatment with patient approval and waiver free of charge, that's one thing.

But they almost immediately turn around and say " oh we'll need to cover costs..." and suddenly the incentive is very different.

Once you've actually exhausted all other options, even a treatment that works probably won't save your life. Breakthrough treatments usually make a bigger difference when the conventional 5-year survival rate is around 20%, not 0%. Most "broad-spectrum" cancer treatments (radiation, cell division inhibitors, surgery) tend to cause permanent damage to multiple organs.

All other considerations aside, the technical detail defining this case is that she administered herself this treatment before other options. Which made all the difference, and which makes it not an option "if they've exhausted other options"...

You can't see any externality risks to nonconsenters of having people use unapproved viruses on themselves sold from hucksters on TV infomercials and stuff?

Easy, don’t let hucksters make TV infomercials promoting their snake oil.

Exhausting all treatment options is not the same as having nothing to close.

There's no shortage of cancer patients at end-of-life stage undergoing aggressive treatments and/or experimental therapies in clinical trials for minimal to no survival benefit. For almost all of these patients, the best option for them and their loved ones will end up having been a palliative or best supportive care model.

But despite this, isn’t it their right to try in the hope that they can be the lucky one to get more years of life?

Saving people from themselves is a suspicious reason for anything.

People spend billions on homeopathy, so... is it?

Identifying homeopathy as a case where less freedom would benefit someone is not sufficient to argue that it's a better policy.

Everyone who laughs so confidently at homeopathy, would likely do the same for a cutting edge treatment, which has yet to be widely recognized as effective. And in that case a lack of freedom would lead to a worse outcome.

That's complete hogwash. Homeopathy's core idea is that you can magically negate a poison by diluting it billions or trillions of times into a cure usually to the point where there's no detectable component anyway.

Experimental treatments definitely invite skepticism, and should. Humans can generally contain more than one level of skepticism - this treatment has a certain rate of failure, this treatment is unproven, and important, this treatment has no mechanism that could work and is a scam meant to separate a fool from his money.

The placebo effect is real.

And why would you need to spend billions then? And why would you need to buy anything but a sugar pill instead of some unproven bs which is completely unregulated and might be something from glass clippings to something that could genuinely hurt you?

These same arguments get trotted out every time someone wants to defend very stupid practices and they have no teeth.

Maybe the placebo effect works even better if you spend more money (?)

Let's try it, you send me all your money and tell me how you feel.

That’s something only a hardcore blindsided liberal would say. My grandma (RIP) most definitely needed that for a few years before she died.

Easy: Zero. What you describe as "desperate people" are people who would already die without "yolo[ing] on themselves", so, by definition, the worst outcome is that they still die.

Precisely the same number as would have died from terminal disease anyway ?

The same? Desperate people yoloing in themselves is the number of people. regulating this sector instead of just keeping out the quacks was a thorough mistake .

Regulation is the mechanism by which quacks are filtered out of the healthcare industry. It is hardly foolproof (see lecanemab).

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