7 ms·

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

89 points by vwoolf 2y ago

bell-cot 2y ago
A much deeper & wider-ranging article that I'd assumed from the title. Though I don't see anything on whether "the cost of keeping me alive" should include a "...under America's dysfunction and greed-centric health care system" clause.
- giantg2 2y ago
  It seems people are disagreeing with you, maybe because your statement is short and seen as political. However, you do have a valid point. Even in socially funded systems there has to be a cutoff on what care will be funded and what will not based on the views of society and the potential costs vs benefits (including probability of sucess). A very interesting example on how social views influence healthcare decisions and costs can actually be seen in the US system via the Amish communities, the church health funding, and their views on medical interventions. https://slatestarcodex.com/2020/04/20/the-amish-health-care-system/ https://slatestarcodex.com/2020/04/20/the-amish-health-care-...
  - bell-cot 2y ago
    Actually, I was thinking more of "$X per month to keep me alive in the US" vs. "$X/4 per month to keep me alive in $Medical_Tourism_Destination"...would that change the answer to "is it worth it?". (In some cases, for some people, & other obvious caveats.)
  - derbOac 2y ago
    > there has to be a cutoff on what care will be funded and what will not based on the views of society and the potential costs vs benefits (including probability of success). It goes even further than that though, when you start to allow for the full force of real-world economics. These types of discussions (end-of-life economics, life value) tend to make these idealistic assumptions, that actors (providers, payers) are rational and acting in the best interest of the patient against the constraints of reality. Often like the essay, this is probably accurate. Where it gets messy, as the OP is pointing to, is when you start admitting that sometimes providers, payers, or other individuals or entities don't have your best interests in mind, are irrational, or something else. Canada, for instance, has a socialized health care system, but also has evoked a lot of criticism for scenarios where individuals seem to be counseled into euthanasia apparently because they're lower SES, or to avoid state responsibilities (not to pick on Canada, or to argue for or against their health care policies, only to point to it as an example of potential problems that arise). We have enough problems accurately valuating lives while people are alive and healthy; doing so with passive or active killing (for lack of a better term) raises even more economic and ethical issues. We tend to think of people as fixed unchanging objects that can be perfectly measured, which is far from the case. I have acquaintances that I can think of, for instance, that spent years doing lower-paid jobs before getting into, and then graduating from, medical school. What is the value of that person and how should we valuate it at any given moment? Are standardized tests a perfect or even, really good, measure of ability? Not really. Why is someone's life situation the way it is? Is there something else that could be done? In my opinion, before discussions of "life value" have any traction, there has to be an equally skeptical discussion about the value of those valuations to the entity doing so, and why. What incentives do the "valuators" have in making that valuation? Often in the US we even talk about incentives to providers and so forth for artificially prolonging life and providing pointless care, but incentives can just as easily work the other way too. In a lot of ways this is what's meant by "you can't put a value on a human life". Clearly there's a lot to that statement, but I think in part it reflects the starkness not of death but everything wrong with the processes by which we value people in general.
    - s1artibartfast 2y ago
      in the US, almost nobody has your financial interests in mind. Individuals want the most expensive care when they are sick, because costs are distributed over their insurance pool. Insurance companies want the most expensive care, because profits are capped as a % of expenses. PBMs make money on the difference between list price and rebates. Lastly, manufacturers obviously want to sell for the highest price. I honestly think that if you asked most people with 6 months to live if they would prefer care or to give their children 500k, they would choose the latter. When it is saving other people 500k, they dont.
- refurb 2y ago
  If that's what you got from the article you clearly missed the most important point.
  - bell-cot 2y ago
    Adding ~1K words of "I agree with X...Y is a good point...Z is really interesting...I didn't know W..." to my comment felt like a poor use of time.
- analog31 2y ago
  Right. This issue is mixed up with whether keeping the health insurance industry alive is worth the cost.
PaulHoule 2y ago
That bit about Golden Rice is a crock. I'm not saying it couldn't play a positive role or that I think it is dangerous, but there are (1) many ways to get Vitamin A, (2) many problems in global nutrition other than Vitamin A. Trying to picture the developers like Prometheus getting their liver torn out every day just isn't helpful. The fact that they got 100 Nobel Prize winners to sign their petition is bunk because very few of them know about agronomy or the problems of marketing technology in the developing world. Specifically: Golden Rice has to compete in terms of all the agronomic and gastronomic variables that matter to farmers and consumers. They aren't going to put up with worse yield, drought tolerance, etc. just for this one trait. The first version of Golden Rice didn't have a lot of Vitamin A, though the second version does. There have been efforts across the last 50 years or so to get people in rural areas to switch to better cookstoves that are a great case study in just how hard it can be to get people in the developing world to adopt something new. It can be done, but Greenpeace is the least of the obstacles that they face.
- giantg2 2y ago
  The thing that I haven't been able to really understand, is why aren't these areas able to grow other vitamin A rich crops? The climate and environment is usually fine for growing something - yams, mangos, cantaloupe, carrots, etc. I can see that sometimes it's a cost thing as those sell for higher prices or are more expensive to preserve than rice. But it seems that farmers stick with regular rice because that's what they know and are set up to do. Maybe switching to golden rice is easier since the fields are the same, but things like yield and such could be a barrier. Maybe it would be better to create a program train/pay for additonal farms or conversion of existing farms into other vitamin A rich crops. Increasing supply could reduce the price and make it more affordable. Or is it partially an education thing, where consumers don't know they're deficient? Maybe we need more education there. In any case, it's seems very complex, beyond just the rice.
  - Retric 2y ago
    People most in need of vitamin A don’t realize or can’t pay a premium for something else. Ignorance is a big part of why foods get fortified. Scurvy is making something of a comeback among wealthy kids eating an unhealthy diet because high temperatures destroys Vitamin C so you need to eat un/minimally cooked foods or have it added back in. https://www.timesofisrael.com/scurvy-makes-a-shocking-comeback/ https://www.timesofisrael.com/scurvy-makes-a-shocking-comeba...
paxys 2y ago
I recommend anyone who is interested in this area read "Being Mortal: Medicine and What Matters in the End" by Atul Gawande. Not just for the financial aspects, but an overall deconstruction of the broken end-of-life care system in the country. By making "extend one's life for a few days/weeks by any means necessary" as the gold standard for good medical care, we have lost sight of what healthcare should actually be about. Choice, dignity, comfort are all thrown out of the window in favor of metrics and profit.
- llamaimperative 2y ago
  And fear. Our culture is not good at death. Thanks for the book recommendation, definitely going to pick this up! Edit to excerpt a great review from Goodreads: "If you think you might get older as time goes by and/or think you might even die at some time (or have relatives or other loved ones to whom this might apply), I urge you to read this book."
  - rqtwteye 2y ago
    It would great if we had a better culture around dying. My parents are in their 90s. When I get to the senior home they live and talk to people it’s pretty clear that it would often be better if people could just say “enough is enough” and go out with dignity and respect. A lot of people there just live day by day and wait for it to be over.
    - hirvi74 2y ago
      > it would often be better if people could just say “enough is enough” and go out with dignity and respect My father desires this. He was a nurse for much of my life. He is adamant about two points in regards to his death and the events leading up to it: 1. He will never become a burden. 2. He will not die in a hospital bed. He believes that when it is his time to go, then it is his time to go. No point in delaying the inevitable. As a nurse, he has seen many patients receive treatments and the outcomes/prognosis that results from said treatments. Based on many of the stories I have heard through out my life, I think I can greatly sympathize with his views. Though, I myself am a bit too neurotic about death to have such a view. My father has stuck to his guns though. He's in his 70s. Annual checkup? Doesn't do them. He doesn't even know nor care about his blood pressure, cholesterol, etc.. Routine colonoscopy? Never had one. He's told me since I was young, "The day I can't tie my own shoes is the day I'm calling it quits." I seriously believe him and I have the utmost respect for him too.
ericmcer 2y ago
"The future, which distinctly though barely missing, is going to be brighter than the present." This one hit pretty hard. I am not a cancer patient who is missing a life saving treatment by 10 years, but it does feel like we are living in a sort of liminal space between religion and technology. Sure we have iphones and Netflix but we all still work 40-50 hour weeks. ChatGPT seems nifty but if I break my arm they will just throw a cast on it and tell me to wait it out.
- admissionsguy 2y ago
  [flagged]
  - BriggyDwiggs42 2y ago
    Oh my god man rent free
  - Rodeoclash 2y ago
    [flagged]
antisthenes 2y ago
One thing about keeping sick people alive that financials don't cover - keeping up the social contract. A society must take care of its weak and old, unless you want these people to reneg on the contract and start being destructive. Marginalizing and neglecting a social group is step 1 towards fostering terrorism.
- AnimalMuppet 2y ago
  Yes... but not at unlimited cost. In a society with limited resources, is keeping one old person alive worth 10 child/years of education? Worth heart surgery for a 50-year-old? Worth basic medical care for a dozen poor families? Yes, the social contract says that we have to care for old people, including medically. It also says we have to educate children, and care for the poor, and provide medical care for everyone else. None of those claims on the social contract gets an unlimited budget, because the other claims are also out there, and society doesn't have unlimited resources.
  - derbOac 2y ago
    The tricky part though is everyone will be part of that group unless they die young. So reneging on the social contract with the old means reneging on the social contract with essentially everyone. "Them" being destructive in response doesn't necessarily mean 85 year-olds burning things down, what it means is the 20, 30, and 40 year-olds seeing what's coming and burning things down.
    - s1artibartfast 2y ago
      what makes it reneging? People in 1924 didnt have fancy end of life care. People today dont have future technology. Why cant the social contract be an honest and up front discussion?
- bittercynic 2y ago
  >must take care of its weak and old Agreed, but taking care doesn't necessarily have to mean extending life as long as possible, all other factors be damned. In some cases close to me, I believe people were kept alive through treatments that they were unable to consent to, and I believed they experienced a lot of extremely unpleasant things at the end of their lives for no benefit, and were robbed of the chance to say a peaceful and dignified goodbye.
CharlieDigital 2y ago
> The big caveat to saying that I’m not worth keeping alive, though, outside the value the people who love me claim I provide, is that I’m also generating data for clinical trials helps move the state-of-the-art forward. Interesting perspective here. The FDA maintains an open database of clinical trials that is accessible over at https://clinicaltrials.gov https://clinicaltrials.gov and they have an API available as well[0]. A separate group called the Clinical Trials Transformation Initiative (CTTI) out of Duke maintains the AACT database[1] that is a nightly export of the FDA database to Postgres (useful for anyone that wants to do data analysis on clinical trials). A writeup here about the background of this database for anyone interested: https://www.linkedin.com/pulse/bestworst-kept-secret-data-repository-life-sciences-charles-chen/ https://www.linkedin.com/pulse/bestworst-kept-secret-data-re... There are a few companies in this space that provide patients a way to find clinical trials and most regional healthcare systems will have a web page dedicated to listing their ongoing clinical trials. For my part, I've been building an AI agent that watches the daily change feed from clinicaltrials.gov and sends out a personalized newsletter that filters for specific trials and answers specific questions about those matched trials: https://zeeq.ai https://zeeq.ai. Hopefully a useful tool for anyone that is interested in participating in or tracking clinical trials. [0] https://clinicaltrials.gov/data-api/api#extapi https://clinicaltrials.gov/data-api/api#extapi [1] https://aact.ctti-clinicaltrials.org/ https://aact.ctti-clinicaltrials.org/
- ryandrake 2y ago
  I had a friend who suffered through Parkinson's Disease, and he actively sought out clinical trials and any kind of experimental treatment. His attitude was: "I'm most likely going to wither away and die from this thing anyway, so I might as well be a guinea pig and provide data to the scientists on my way out."
- jseliger 2y ago
  For my part, I've been building an AI agent that watches the daily change feed from clinicaltrials.gov and sends out a personalized newsletter that filters for specific trials and answers specific questions about those matched trials: https://zeeq.ai https://zeeq.ai. Hopefully a useful tool for anyone that is interested in participating in or tracking clinical trials. 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-too-quickly 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-clinical-trials-part-1-its-like-online-dating-except-if-you-choose-wrong-you-die/ 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/ https://worksinprogress.co/issue/the-story-of-vaccinateca/, which seems hard.
mlhpdx 2y ago
I’m so grateful for the author having written and shared this piece. I have similar thoughts - at what point is money to extend my life better applied to others? I don’t know how to decide that, but I know it’s a decision that is being made irrationally.
- NoMoreNicksLeft 2y ago
  > at what point is money to extend my life better applied to others? Depends on who the others are. If it's applied to my children, or other family, or even (possibly) really close friends... sane decisions result. If on the other hand, it were you mihpdx (I don't believe we've ever met), then the money is always better applied to me. You could drop dead tomorrow, I wouldn't know, and I wouldn't much care if I did somehow find out. Our interests aren't even slightly aligned. Call me a monster if you like. But understand very carefully that most people are like me, even the ones pretending (mostly for social status) that they are the opposite. > but I know it’s a decision that is being made irrationally. It's not being made irrationally. Not even slightly. What's happening, is that some really big dorkwads are insisting that my interests (and many other people's) are different than they are. So when we act in ways that rationally move us towards our goals, these people start screeching that we're irrational. Or that "acting against our own interests". Our collective actions are just some hodgepodge mixture of people acting and counter-acting against each other.
zrn900 2y ago
Keeping anybody alive is worth it. The human species became a civilization only because it kept its then-unproductive weaker members alive - which allowed it to develop learning, technology, and all the things that revolve around them. Even before that, it was able to survive and exist as a physically weaker species by taking care of and keeping alive its sick and wounded. This shows how destructive capitalism is: In its pursuit of maximizing the profits to increase the hoards of imaginary wealth, it even destroys the most fundamental tenets that made humans a successful civilization.
- nosefurhairdo 2y ago
  Capitalism is the engine that has lifted more humans out of poverty than any other. Countries which have embraced that fact have been better places to live than others. Cost/benefit analysis of medical treatment for the terminally ill does not suggest capitalism is "destructive".
  - hypeatei 2y ago
    Ah yes, the engine that brought you a health insurance industry which treats humans as numbers on a spreadsheet. One where people don't seek medical treatment because the threat of being put into financial peril is too big. This really is a better place to live, I guess.
  - zrn900 2y ago
    > Capitalism is the engine that has lifted more humans out of poverty than any other. Countries which have embraced that fact have been better places to live than others Capitalism didn't lift anyone out of sh*t. In its heyday people were living and dying in industrial slums at a ripe old age of 40. Only after the USSR won Ww2 instead of 'crumbling down like a house of cards' how the capitalist press was expecting before the war that the sociopaths in the West had to give concessions to their people to compete with the Eastern Bloc so that the people wouldn't overthrow them. When the USSR dissolved, they declared 'We won', and they started taking back all of those concessions. As a result, there are countries where people are killed if they cant pay for healthcare now. > Cost/benefit analysis of medical treatment for the terminally ill does not suggest capitalism is "destructive" It does.
jp57 2y ago
We humans really live for one another, and without other people and especially love, why bother? 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.
- darkwater 2y ago
  What a lucid and well-expressed opinion. Kudos.
noahmbarr 2y ago
Great NPR segment about the cost of a life, and who dialysis set a lin in the sand: https://www.npr.org/2010/09/24/130104047/who-decides-the-price-of-human-life https://www.npr.org/2010/09/24/130104047/who-decides-the-pri...
_wire_ 2y ago
This article circumscribes but fails to navigate the imperatives of life which sanity must regard as beyond the purvey of reason. The question writ large but not asked is "What constitutes medicine?" versus all the other ways that we struggle to manage the messy and painful nature of life. What hits me about the author's dialectic— and also the bulk of these comments— is the unexamined pre-disposition towards a calculus of life in place of a spiritual reckoning of its mystery. Such reckoning need be nothing more than a conscious observation of life's ultimate mystery; "conscious" in the sense of allowing this observation to inform the dialectic. Regarding overt libertarian political jabs at Greenpeace or the FDA, the author fails to regard the the major purpose of policy is to restrain activity that causes general harm, not advance activity that leads to individual prosperity. The author is facing the final conflict of every individual, that he shall meet his end in some fashion not of his own choosing with a dialectic of choice. This mode of discourse is internally unreconcilable. If there's any credence to the observation of 5 stages of grief, this article is locked at the bargaining stage. But so is the entire financial intelligence system: being incapable of recognizing nor authorizing the obvious dimensions of life beyond any calculus. Here the true libertarian must acknowledge the limits of his discourse and turn attention to making the most of his circumstances, in which he has every right and responsibility to seek a path of his own, subject to a principle of freedom most succinctly stated as the liberty to do what you have to do, informed by a rich social tapestry of relationships all of which, if sane, must recognize the afore mentioned strange, yet obvious, dimension of life that manifests as a surplus beyond any a-priori design intention. Where this article informs its readers of specific constraints in the author's experience and story of his path, it is truly valiant and valuable. Where it digresses into observations about policy I find haphazard generalization from the specific. What stands out is our culture's unrelenting bias towards reason over the unreasonable. A mind wiser than mine has observed that today's science has quietly replaced any hope for an intelligible world with theories that are intelligible, with the attendant consequence to reason, that life may be beyond our "scope and limits" as grammatical creatures, and I will add to this my thought that we require a philosophy of the unknowable that let's us continue to explore the world's mystery in a way that nurtures a decent life, given our limits. It's not paradoxical that social policy attempts to restrain us from the misfortunes that attend an "anything goes" California-ideology mindset in the interest of preventing harm from radical experimentation. It's ok if the progress of the human condition takes longer than our own lives. We can become adapted to our nature.

89 points by vwoolf 2y ago

A much deeper & wider-ranging article that I'd assumed from the title. Though I don't see anything on whether "the cost of keeping me alive" should include a "...under America's dysfunction and greed-centric health care system" clause.

giantg2 2y ago
It seems people are disagreeing with you, maybe because your statement is short and seen as political. However, you do have a valid point. Even in socially funded systems there has to be a cutoff on what care will be funded and what will not based on the views of society and the potential costs vs benefits (including probability of sucess). A very interesting example on how social views influence healthcare decisions and costs can actually be seen in the US system via the Amish communities, the church health funding, and their views on medical interventions. https://slatestarcodex.com/2020/04/20/the-amish-health-care-system/ https://slatestarcodex.com/2020/04/20/the-amish-health-care-...
- bell-cot 2y ago
  Actually, I was thinking more of "$X per month to keep me alive in the US" vs. "$X/4 per month to keep me alive in $Medical_Tourism_Destination"...would that change the answer to "is it worth it?". (In some cases, for some people, & other obvious caveats.)
- derbOac 2y ago
  > there has to be a cutoff on what care will be funded and what will not based on the views of society and the potential costs vs benefits (including probability of success). It goes even further than that though, when you start to allow for the full force of real-world economics. These types of discussions (end-of-life economics, life value) tend to make these idealistic assumptions, that actors (providers, payers) are rational and acting in the best interest of the patient against the constraints of reality. Often like the essay, this is probably accurate. Where it gets messy, as the OP is pointing to, is when you start admitting that sometimes providers, payers, or other individuals or entities don't have your best interests in mind, are irrational, or something else. Canada, for instance, has a socialized health care system, but also has evoked a lot of criticism for scenarios where individuals seem to be counseled into euthanasia apparently because they're lower SES, or to avoid state responsibilities (not to pick on Canada, or to argue for or against their health care policies, only to point to it as an example of potential problems that arise). We have enough problems accurately valuating lives while people are alive and healthy; doing so with passive or active killing (for lack of a better term) raises even more economic and ethical issues. We tend to think of people as fixed unchanging objects that can be perfectly measured, which is far from the case. I have acquaintances that I can think of, for instance, that spent years doing lower-paid jobs before getting into, and then graduating from, medical school. What is the value of that person and how should we valuate it at any given moment? Are standardized tests a perfect or even, really good, measure of ability? Not really. Why is someone's life situation the way it is? Is there something else that could be done? In my opinion, before discussions of "life value" have any traction, there has to be an equally skeptical discussion about the value of those valuations to the entity doing so, and why. What incentives do the "valuators" have in making that valuation? Often in the US we even talk about incentives to providers and so forth for artificially prolonging life and providing pointless care, but incentives can just as easily work the other way too. In a lot of ways this is what's meant by "you can't put a value on a human life". Clearly there's a lot to that statement, but I think in part it reflects the starkness not of death but everything wrong with the processes by which we value people in general.
  - s1artibartfast 2y ago
    in the US, almost nobody has your financial interests in mind. Individuals want the most expensive care when they are sick, because costs are distributed over their insurance pool. Insurance companies want the most expensive care, because profits are capped as a % of expenses. PBMs make money on the difference between list price and rebates. Lastly, manufacturers obviously want to sell for the highest price. I honestly think that if you asked most people with 6 months to live if they would prefer care or to give their children 500k, they would choose the latter. When it is saving other people 500k, they dont.
refurb 2y ago
If that's what you got from the article you clearly missed the most important point.
- bell-cot 2y ago
  Adding ~1K words of "I agree with X...Y is a good point...Z is really interesting...I didn't know W..." to my comment felt like a poor use of time.
analog31 2y ago
Right. This issue is mixed up with whether keeping the health insurance industry alive is worth the cost.

PaulHoule 2y ago

That bit about Golden Rice is a crock. I'm not saying it couldn't play a positive role or that I think it is dangerous, but there are (1) many ways to get Vitamin A, (2) many problems in global nutrition other than Vitamin A. Trying to picture the developers like Prometheus getting their liver torn out every day just isn't helpful. The fact that they got 100 Nobel Prize winners to sign their petition is bunk because very few of them know about agronomy or the problems of marketing technology in the developing world. Specifically: Golden Rice has to compete in terms of all the agronomic and gastronomic variables that matter to farmers and consumers. They aren't going to put up with worse yield, drought tolerance, etc. just for this one trait. The first version of Golden Rice didn't have a lot of Vitamin A, though the second version does. There have been efforts across the last 50 years or so to get people in rural areas to switch to better cookstoves that are a great case study in just how hard it can be to get people in the developing world to adopt something new. It can be done, but Greenpeace is the least of the obstacles that they face.

giantg2 2y ago
The thing that I haven't been able to really understand, is why aren't these areas able to grow other vitamin A rich crops? The climate and environment is usually fine for growing something - yams, mangos, cantaloupe, carrots, etc. I can see that sometimes it's a cost thing as those sell for higher prices or are more expensive to preserve than rice. But it seems that farmers stick with regular rice because that's what they know and are set up to do. Maybe switching to golden rice is easier since the fields are the same, but things like yield and such could be a barrier. Maybe it would be better to create a program train/pay for additonal farms or conversion of existing farms into other vitamin A rich crops. Increasing supply could reduce the price and make it more affordable. Or is it partially an education thing, where consumers don't know they're deficient? Maybe we need more education there. In any case, it's seems very complex, beyond just the rice.
- Retric 2y ago
  People most in need of vitamin A don’t realize or can’t pay a premium for something else. Ignorance is a big part of why foods get fortified. Scurvy is making something of a comeback among wealthy kids eating an unhealthy diet because high temperatures destroys Vitamin C so you need to eat un/minimally cooked foods or have it added back in. https://www.timesofisrael.com/scurvy-makes-a-shocking-comeback/ https://www.timesofisrael.com/scurvy-makes-a-shocking-comeba...

paxys 2y ago

I recommend anyone who is interested in this area read "Being Mortal: Medicine and What Matters in the End" by Atul Gawande. Not just for the financial aspects, but an overall deconstruction of the broken end-of-life care system in the country. By making "extend one's life for a few days/weeks by any means necessary" as the gold standard for good medical care, we have lost sight of what healthcare should actually be about. Choice, dignity, comfort are all thrown out of the window in favor of metrics and profit.

llamaimperative 2y ago
And fear. Our culture is not good at death. Thanks for the book recommendation, definitely going to pick this up! Edit to excerpt a great review from Goodreads: "If you think you might get older as time goes by and/or think you might even die at some time (or have relatives or other loved ones to whom this might apply), I urge you to read this book."
- rqtwteye 2y ago
  It would great if we had a better culture around dying. My parents are in their 90s. When I get to the senior home they live and talk to people it’s pretty clear that it would often be better if people could just say “enough is enough” and go out with dignity and respect. A lot of people there just live day by day and wait for it to be over.
  - hirvi74 2y ago
    > it would often be better if people could just say “enough is enough” and go out with dignity and respect My father desires this. He was a nurse for much of my life. He is adamant about two points in regards to his death and the events leading up to it: 1. He will never become a burden. 2. He will not die in a hospital bed. He believes that when it is his time to go, then it is his time to go. No point in delaying the inevitable. As a nurse, he has seen many patients receive treatments and the outcomes/prognosis that results from said treatments. Based on many of the stories I have heard through out my life, I think I can greatly sympathize with his views. Though, I myself am a bit too neurotic about death to have such a view. My father has stuck to his guns though. He's in his 70s. Annual checkup? Doesn't do them. He doesn't even know nor care about his blood pressure, cholesterol, etc.. Routine colonoscopy? Never had one. He's told me since I was young, "The day I can't tie my own shoes is the day I'm calling it quits." I seriously believe him and I have the utmost respect for him too.

ericmcer 2y ago

"The future, which distinctly though barely missing, is going to be brighter than the present." This one hit pretty hard. I am not a cancer patient who is missing a life saving treatment by 10 years, but it does feel like we are living in a sort of liminal space between religion and technology. Sure we have iphones and Netflix but we all still work 40-50 hour weeks. ChatGPT seems nifty but if I break my arm they will just throw a cast on it and tell me to wait it out.

admissionsguy 2y ago
[flagged]
- BriggyDwiggs42 2y ago
  Oh my god man rent free
- Rodeoclash 2y ago
  [flagged]

antisthenes 2y ago

One thing about keeping sick people alive that financials don't cover - keeping up the social contract. A society must take care of its weak and old, unless you want these people to reneg on the contract and start being destructive. Marginalizing and neglecting a social group is step 1 towards fostering terrorism.

AnimalMuppet 2y ago
Yes... but not at unlimited cost. In a society with limited resources, is keeping one old person alive worth 10 child/years of education? Worth heart surgery for a 50-year-old? Worth basic medical care for a dozen poor families? Yes, the social contract says that we have to care for old people, including medically. It also says we have to educate children, and care for the poor, and provide medical care for everyone else. None of those claims on the social contract gets an unlimited budget, because the other claims are also out there, and society doesn't have unlimited resources.
- derbOac 2y ago
  The tricky part though is everyone will be part of that group unless they die young. So reneging on the social contract with the old means reneging on the social contract with essentially everyone. "Them" being destructive in response doesn't necessarily mean 85 year-olds burning things down, what it means is the 20, 30, and 40 year-olds seeing what's coming and burning things down.
  - s1artibartfast 2y ago
    what makes it reneging? People in 1924 didnt have fancy end of life care. People today dont have future technology. Why cant the social contract be an honest and up front discussion?
bittercynic 2y ago
>must take care of its weak and old Agreed, but taking care doesn't necessarily have to mean extending life as long as possible, all other factors be damned. In some cases close to me, I believe people were kept alive through treatments that they were unable to consent to, and I believed they experienced a lot of extremely unpleasant things at the end of their lives for no benefit, and were robbed of the chance to say a peaceful and dignified goodbye.

CharlieDigital 2y ago

> The big caveat to saying that I’m not worth keeping alive, though, outside the value the people who love me claim I provide, is that I’m also generating data for clinical trials helps move the state-of-the-art forward. Interesting perspective here. The FDA maintains an open database of clinical trials that is accessible over at https://clinicaltrials.gov https://clinicaltrials.gov and they have an API available as well[0]. A separate group called the Clinical Trials Transformation Initiative (CTTI) out of Duke maintains the AACT database[1] that is a nightly export of the FDA database to Postgres (useful for anyone that wants to do data analysis on clinical trials). A writeup here about the background of this database for anyone interested: https://www.linkedin.com/pulse/bestworst-kept-secret-data-repository-life-sciences-charles-chen/ https://www.linkedin.com/pulse/bestworst-kept-secret-data-re... There are a few companies in this space that provide patients a way to find clinical trials and most regional healthcare systems will have a web page dedicated to listing their ongoing clinical trials. For my part, I've been building an AI agent that watches the daily change feed from clinicaltrials.gov and sends out a personalized newsletter that filters for specific trials and answers specific questions about those matched trials: https://zeeq.ai https://zeeq.ai. Hopefully a useful tool for anyone that is interested in participating in or tracking clinical trials. [0] https://clinicaltrials.gov/data-api/api#extapi https://clinicaltrials.gov/data-api/api#extapi [1] https://aact.ctti-clinicaltrials.org/ https://aact.ctti-clinicaltrials.org/

ryandrake 2y ago
I had a friend who suffered through Parkinson's Disease, and he actively sought out clinical trials and any kind of experimental treatment. His attitude was: "I'm most likely going to wither away and die from this thing anyway, so I might as well be a guinea pig and provide data to the scientists on my way out."
jseliger 2y ago
For my part, I've been building an AI agent that watches the daily change feed from clinicaltrials.gov and sends out a personalized newsletter that filters for specific trials and answers specific questions about those matched trials: https://zeeq.ai https://zeeq.ai. Hopefully a useful tool for anyone that is interested in participating in or tracking clinical trials. 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-too-quickly 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-clinical-trials-part-1-its-like-online-dating-except-if-you-choose-wrong-you-die/ 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/ https://worksinprogress.co/issue/the-story-of-vaccinateca/, which seems hard.

mlhpdx 2y ago

I’m so grateful for the author having written and shared this piece. I have similar thoughts - at what point is money to extend my life better applied to others? I don’t know how to decide that, but I know it’s a decision that is being made irrationally.

NoMoreNicksLeft 2y ago
> at what point is money to extend my life better applied to others? Depends on who the others are. If it's applied to my children, or other family, or even (possibly) really close friends... sane decisions result. If on the other hand, it were you mihpdx (I don't believe we've ever met), then the money is always better applied to me. You could drop dead tomorrow, I wouldn't know, and I wouldn't much care if I did somehow find out. Our interests aren't even slightly aligned. Call me a monster if you like. But understand very carefully that most people are like me, even the ones pretending (mostly for social status) that they are the opposite. > but I know it’s a decision that is being made irrationally. It's not being made irrationally. Not even slightly. What's happening, is that some really big dorkwads are insisting that my interests (and many other people's) are different than they are. So when we act in ways that rationally move us towards our goals, these people start screeching that we're irrational. Or that "acting against our own interests". Our collective actions are just some hodgepodge mixture of people acting and counter-acting against each other.

zrn900 2y ago

Keeping anybody alive is worth it. The human species became a civilization only because it kept its then-unproductive weaker members alive - which allowed it to develop learning, technology, and all the things that revolve around them. Even before that, it was able to survive and exist as a physically weaker species by taking care of and keeping alive its sick and wounded. This shows how destructive capitalism is: In its pursuit of maximizing the profits to increase the hoards of imaginary wealth, it even destroys the most fundamental tenets that made humans a successful civilization.

nosefurhairdo 2y ago
Capitalism is the engine that has lifted more humans out of poverty than any other. Countries which have embraced that fact have been better places to live than others. Cost/benefit analysis of medical treatment for the terminally ill does not suggest capitalism is "destructive".
- hypeatei 2y ago
  Ah yes, the engine that brought you a health insurance industry which treats humans as numbers on a spreadsheet. One where people don't seek medical treatment because the threat of being put into financial peril is too big. This really is a better place to live, I guess.
- zrn900 2y ago
  > Capitalism is the engine that has lifted more humans out of poverty than any other. Countries which have embraced that fact have been better places to live than others Capitalism didn't lift anyone out of sh*t. In its heyday people were living and dying in industrial slums at a ripe old age of 40. Only after the USSR won Ww2 instead of 'crumbling down like a house of cards' how the capitalist press was expecting before the war that the sociopaths in the West had to give concessions to their people to compete with the Eastern Bloc so that the people wouldn't overthrow them. When the USSR dissolved, they declared 'We won', and they started taking back all of those concessions. As a result, there are countries where people are killed if they cant pay for healthcare now. > Cost/benefit analysis of medical treatment for the terminally ill does not suggest capitalism is "destructive" It does.

jp57 2y ago

We humans really live for one another, and without other people and especially love, why bother? 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.

darkwater 2y ago
What a lucid and well-expressed opinion. Kudos.

noahmbarr 2y ago

Great NPR segment about the cost of a life, and who dialysis set a lin in the sand: https://www.npr.org/2010/09/24/130104047/who-decides-the-price-of-human-life https://www.npr.org/2010/09/24/130104047/who-decides-the-pri...

_wire_ 2y ago

This article circumscribes but fails to navigate the imperatives of life which sanity must regard as beyond the purvey of reason. The question writ large but not asked is "What constitutes medicine?" versus all the other ways that we struggle to manage the messy and painful nature of life. What hits me about the author's dialectic— and also the bulk of these comments— is the unexamined pre-disposition towards a calculus of life in place of a spiritual reckoning of its mystery. Such reckoning need be nothing more than a conscious observation of life's ultimate mystery; "conscious" in the sense of allowing this observation to inform the dialectic. Regarding overt libertarian political jabs at Greenpeace or the FDA, the author fails to regard the the major purpose of policy is to restrain activity that causes general harm, not advance activity that leads to individual prosperity. The author is facing the final conflict of every individual, that he shall meet his end in some fashion not of his own choosing with a dialectic of choice. This mode of discourse is internally unreconcilable. If there's any credence to the observation of 5 stages of grief, this article is locked at the bargaining stage. But so is the entire financial intelligence system: being incapable of recognizing nor authorizing the obvious dimensions of life beyond any calculus. Here the true libertarian must acknowledge the limits of his discourse and turn attention to making the most of his circumstances, in which he has every right and responsibility to seek a path of his own, subject to a principle of freedom most succinctly stated as the liberty to do what you have to do, informed by a rich social tapestry of relationships all of which, if sane, must recognize the afore mentioned strange, yet obvious, dimension of life that manifests as a surplus beyond any a-priori design intention. Where this article informs its readers of specific constraints in the author's experience and story of his path, it is truly valiant and valuable. Where it digresses into observations about policy I find haphazard generalization from the specific. What stands out is our culture's unrelenting bias towards reason over the unreasonable. A mind wiser than mine has observed that today's science has quietly replaced any hope for an intelligible world with theories that are intelligible, with the attendant consequence to reason, that life may be beyond our "scope and limits" as grammatical creatures, and I will add to this my thought that we require a philosophy of the unknowable that let's us continue to explore the world's mystery in a way that nurtures a decent life, given our limits. It's not paradoxical that social policy attempts to restrain us from the misfortunes that attend an "anything goes" California-ideology mindset in the interest of preventing harm from radical experimentation. It's ok if the progress of the human condition takes longer than our own lives. We can become adapted to our nature.