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My take from this is that the price for experimental treatments should be regulated
so... personally? were I to shell out unusual money for experimental treatments, I'd be way more comfortable with a pay-for-performance model. Like if my doctors think I've got a year left, and you think you can cure me for $120K, sure, that seems like a totally reasonable deal if you can actually cure me (and maybe even good for everyone, regardless of if I live or die, if you then use what you learned from me to help others.)

But I'm a computer nerd, not a doctor. I'm not really in a position to tell the difference if you are giving me sugar pills.

Seems to me like we'd align incentives if I'll give you 1/10th that for every year I live past treatment, maybe for the next 20 years (say you have a 50% success rate; I'm not objecting to you taking my money if you can cure me, I just don't want to pay you if you don't) I mean, maybe even I put ten years of that in escrow or what have you up front...

I mean, that's the thing, it is experimental and experimental medicine seems totally reasonable if I'm probably gonna die with non-experimental treatment... but it seems like incentives are misaligned if a for-profit entity gets to offer up "experimental" treatment that I can't tell from sugar pills and they get paid regardless of efficacy.

(I think paying for conventional medicine regardless of efficacy is probably fine, 'cause I think there are standards treatments have to meet before they become 'conventional medicine' - and obviously, 'experimental' treatments don't have to meet that high bar.)

to be clear, I think I'd be even more comfortable with some sort of socially accepted procedure to sign up for really experimental trials done by some non-profit seeing entity. Some sort of procedure where you get several conventional doctors to sign off on, you know, that conventional medicine isn't going to cure you, then sign up for something that looks good, but hasn't been fully tested yet.

I'm just saying, going to a for-profit entity and saying "give me something experimental" and then paying the same on success or failure seems like a pretty bad idea to me.

There’s a chance you’ll survive even without treatment, and giving you sugar pills is way cheaper, so I’m not entirely sure that this scheme gives the right incentives to potentially unscrupulous doctors.
Let's say we have 100 people and they'll each pay you $100K if they are cured. If you give them sugar pills, let's say 1 recovers naturally and pays you a total of $100k. On the other hand, if you give them an experimental drug that cures say 10 of them, then you'll get $1M dollars. So you'd be willing to spend around $900k on actually curing them. That works out to $9k per person.

So the incentives seem correct to me. The incentive is to actually cure you as long as the cost/benefit ratio works out.

However, in order for a treatment that costs $100k up front with a 10% cure rate to work out this way, you'd have to pay $1M if the cure worked. I suspect that most people paying for this cure wouldn't or couldn't make that kind of payment.

Asking people to potentially pay $100,000 for a $9,000 treatment seems unrealistic.

You’re right that the incentives can align when the numbers are right, but I suspect realistic numbers leave you with bad incentives.

eh, I think that for better or worse, the 'prices will fall to match the marginal cost' ship sailed a long time ago; Yes, this is going to make Adam Smith mad, no, I'm not going to fight that fight anymore. I'd pay $200,000 for another 20 years of life without complaint even if the marginal cost for the treatment was super low.

I mean, I think the real problem in misaligned incentives here is that there would be an incentive for the for-profit experimental treatment providers to keep things that should become mainstream "experimental" so that they could continue to charge for things that worked. But even so I still think my suggestion is better, at least for those paying for treatment, than the case in the story where people without medical expertise end up deciding to spend lots of money up front for treatments that explicitly are not generally accepted as effective by the medical community.

It might work if there was a monopoly on treatment. If your choice was sit there and wait to die, or try an experimental treatment where you’ll pay $100,000 if you’re cured, sure, sounds great.

But there’s usually more than one doctor or hospital that can do a given treatment. And some of them will figure they’ll do better if they charge $10,000 up front instead. Would you still take the $100,000 option?

The only way I see it working is if the odds are very good. If there’s a 90% cure rate, paying a small premium for a cure in exchange for paying nothing if it fails makes decent sense. Any retailer with a generous return policy works this way, for example. This also helps the incentives to align: the loss from not handing out treatment will be much higher.

I think that this means the “I’ll pay you if I live” model is a great model for normal medical treatment. You get diagnosed with cancer that has a 50% cure rate? Set it up so you pay 2x if you’re cured and zero if you die, and you’ll help ensure you get the best treatment. You get diagnosed with a disease that will bear your name and your only hope is some crazy experimental treatment that has a 1% chance of saving your life? Going that route will just leave you stuck between death and bankruptcy.

eh, I kinda disagree? I mean, conventional medical treatment is... conventional? like, my understanding is that it's like accounting or anything else regulated and licensed... it's been mostly worked out ahead of time what the right path is, and that while there are choices within that path, really, whichever choice you choose is going to be mostly okay. My accountant tells me to stop if I want to do something illegal. My Doctor isn't going to tell me to throw out my CPAP for one of those little nose stickers.

In a way, this is a lot like my mechanic; Like I pay the mechanic mostly for doing stuff, like they are supposed to figure out what to do through the service manual (I joke that the biggest difference between fixing cars and fixing computers is that the manuals for fixing cars are a lot better)

We've already got paths to take if the doctor steps out of the conventional path and screws it up as a result.

My general feeling is that "experimental" and "alternative" treatments are going to have a lot of stuff that doesn't work at all mixed in; I mean, that seems unavoidable; if you know it works, it's not 'experimental' at all. and because it's outside of conventional medicine, I'm not protected from bad choices through that convention the way I am with conventional medicine. Therefore, it seems like changing the incentive structure is reasonable; there's no real guide as to what the right thing to do is.

You aren't really paying $100,000 for a $9,000 treatment for yourself. You are paying $100,000 for a $90,000 treatment for yourself and nine others who didn't make it. What this scheme does is ensures that those who actually benefit from the cure pay for it which strikes me as a lot fairer then making everyone pay up front even those who will end up dying anyways.
I’m not saying it’s unfair. I just think the numbers that would make it a good incentive for the doctors would also make it so there were no customers.
It seems to me that there is a good incentive for doctors IF the treatment is worth the cost. If the treatment has a really low success rate and is really expensive, sure, the incentive doesn't work for a doctor. But that's because the treatment really isn't worth doing at all.
This would happen less often if the affected patients reported the individuals to the licensing board in the relevant jurisdiction. It's not going to fix it completely, but it would help.
After watching both my in-laws succumb to cancer, I can explain a thing or two about cancer treatment.

First thing is, early detection completely failed. US doctors talk big, but they don't follow through on tests that could have detected these cancers and maybe given my wife's parents a better chance. It's always just "Oopsie, we thought that was just allergies!" And in the case of pancreatic cancer, just forget it--by the time they find it, it's too late and the chemo is just a sad joke.

Second thing is, Mayo Clinic, while 100% more competent in how they run their hospitals, has no better outcomes than anywhere else. You go there hoping for a miracle and no miracle appears. But at least they're efficient.

Third thing is: You should take the best care of yourself you can. That means no smoking and no drinking. I don't know why people think alcohol is safe in any quantity, but it's not. This wasn't a factor in our family's ailments, but it's got to be near the top of the list in general terms. You drink? You smoke? Enjoy your 50s because you won't make it to your 60s. The only thing I could pin down about my in-laws' statistically unlikely deaths is that they both spent time in Tanzania, and I often wondered if they were exposed to toxic heavy metals or radioactive materials while there. It's a long shot, but so is both of them dying of, admittedly two different cancers, but within ten years of one another? Hard to say, but still seems odd to me given the longevity of both their family trees and their general good health and lack of bad habits. My wife lives in terror of breast cancer.

Now the wild tangent: I'm not at all sure what to make of the rumors about the mega-elites having access to treatments that regular people can't get. It makes sense, though. Curing cancer would throw a real monkey wrench into the welfare state and the healthcare profit-making system. And there is some evidence that there might be those kinds of treatments--but they don't seem to be just for the ultra-wealthy and ultra-connected because it probably involves shady shit like freshly harvested infant parts or something just completely beyond the realm of ethics. The rumors abound, and they're probably bs, but what if they're not? I personally feel like I live on a plantation, like I'm the farm animal. So it makes sense that those who control the world would withhold certain technologies and breakthroughs only for themselves because that is how the elite mind works--once you have so much money that money doesn't even matter, the only thing left is power and playing God.

Anyways, enjoy your socialized (rationed) medicine and your early death because that's all most of us are going to get, even here in the states.

I know someone suffering from EDS and she is also trying alternative treatments but there is zero evidence those work. There is a special place for people that exploit terminal patients or people with a chronic illness with no cure.

I suffer from chronic pain due to a medication side effect. There was a doctor that claimed he suffered from it too and wrote this beautiful recovery story(patients with severe symptoms rarely recover to 100% and this dude was now playing basketball), which ended with I now offer the same treatments......and people were falling for it.

When I was diagnosed with cancer of the base of my tongue and my neck my doctor outlined my options and the need to waste as little time as possible. I suddenly realized how much trust she was asking me to place in her. I took 2 days for my own research. I didn't research the options she gave me thinking that was a rabbit hole leading nowhere, I researched her.

Turned out she was Harvard med school, two Johns Hopkins fellowships and a handful of primary author papers all specializing in head and neck cancer. I took her advice on a treatment plan without fear.

I believe it's almost impossible to research treatment methods on your own because the field is so fragmented and complicated. You don't have a month or two, you have days. Researching your medical team is black and white, fact driven and objective.

I want to point out that this kind of therapy is expensive for foreigners (the target audience for this article).

When my mother in law got an unusual cancer in the early '00s, the German medical system (a hybrid public/private system) swung into action: good hospital care on the other side of the country (where the hospital specialized in this kind of cancer), reconstructive surgery, rest spa treatment, and a few years later, when the cancer returned, home care twice a day to make sure she was fed, dressings changed etc.

She had minimal income. The same disease in the US would have bankrupted her and some of the treatment would not even be available.