
The Last Resort - kawera
https://longreads.com/2018/03/22/the-last-resort/
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lsc
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.)

~~~
mikeash
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.

~~~
winstonewert
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.

~~~
mikeash
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.

~~~
winstonewert
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.

~~~
mikeash
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.

~~~
winstonewert
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.

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cladari
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.

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gumby
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.

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avgDev
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.

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appleflaxen
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.

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thefounder
My take from this is that the price for experimental treatments should be
regulated

