The financial costs of healthcare costs, or, is keeping me alive worth it?

Why cant the social contract be an honest and up front discussion?

Reading the essay I couldn't help but think that there was something missing from the author's calculations, and this quote really brought it home.

We do live for one another, and that brings not only personal benefits like the joy of loving and being loved, but societal benefits: it is part of what binds us together and makes us stronger in groups than we are alone.

The value of many actions is not purely in their direct effects, but also their performative value in demonstrating and reinforcing societal norms. This value is an externality in the calculations of the author. Spending enormous sums to add some small amount of time to a terminally ill person is a manifestation of a societal value for life, generally. When someone's life is in jeopardy, our societal norm is to try to save them if we can, without stopping first to count the cost. It is the same mentality that motivates expensive search-and-rescue operations. We don't abandon people to die at sea or on freezing mountaintops, even at enormous cost and when the person came to peril through their own foolishness. Not without at least trying, anyway.

These norms don't come from nowhere, though. Like all societal norms they must be taught and reinforced through action and demonstration. The author is only able to get away with counting the costs in the way he does because he is talking about his own life. If he wrote the same article about a stranger, it would seem to most people as a ghoulish violation of social norms. (Maybe not to some rationalists, I guess.)

But of course, in some sense he is right, at the aggregate level, we must think of these costs. And so -- in well functioning democracies, at least -- we delegate the aggregate decisions on these things to elected bodies, who make the aggregate decisions like deciding budgets for emergency services or subsidized health care, but not individual decisions about who will be saved.

Thank you for making it. From what I've seen and experienced, the problem has been "garbage in, garbage out"—that is, there isn't sufficient data posted publicly on clinicaltrials.gov to figure out which trials are best and which are actually open and available. My wife wrote "Please be dying, but not too quickly: a clinical trial story. A three-part, very deep dive into the insanity that is the 'modern' clinical trial system" on using the system, and the actual experience of it: https://bessstillman.substack.com/p/please-be-dying-but-not-...

To figure out what's actually going on, we've had to make a lot of appointments and talk to oncologists to understand what is available and what isn't. The AI companies whose systems we tried missed the better treatments (e.g. BCA-101, or petosemtamab / MCLA-158), although we did not try yours, so perhaps it's capturing material others aren't. "Phone calls and appointments" are how I wound up learning about Seagen / Pfizer's antibody drug conjugate (ADC) PDL1V: http://jakeseliger.com/2024/04/22/the-emotional-trial-of-cli... (which appears to be working right now, albeit with side effects).

Right now, keeping a true system up to date would require a lot of phone calls, along the lines of VaccinateCA: https://worksinprogress.co/issue/the-story-of-vaccinateca/, which seems hard.

Your best bet in that case is the AACT database which is pretty accessible if you have a basic knowledge of SQL.

The main gap as you identified is that the trial information in CT.gov is quite sparse and not necessarily deep enough so a true system would need to perhaps also crawl first party sources (e.g sponsor websites) or research papers to find more information.