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.
I think a huge part of it isnt even corporatism, but social and cultural avoidance and fear of death. US culture, the only one I claim to speak for, is in denial about death. We hide it away, pretend it wont happen, and then when it does, we lie to the children and try to suppress it ourselves. We drag death out medically, and then have no time to be with the dying. Doing this leads to not only neurotic choices from the living, but strips some of the poignancy, beauty, and urgency from life itself.
One of my saddest, but also most powerful, raw, and formative memories was watching my grandmother die when I was 12. Her lymphoma had relapsed and she chose to put her effort and energy into preparing for her death instead fighting medically. She was a strong woman and fully prepared her estate. She collected every document, listed every account, and wrote detailed instructions (Later, my dad would still find things like the pinkslip pre-signed and in the glove box of the car when he went to sell it.)
When her time was close, my family pulled me out of school for two weeks and we went to stay with her until she passed. I mostly played in another room, but when it was time, I was called in and we held hands and watched her last breaths, and listened to her death rattle together, and cried together. That was the first time I saw my father cry.
It was tremendously sad, of course, but also beautiful, because it was the culmination of a life well lived. I learned a lot that day about the fleetingness of our short lives , the value of agency, and the human endeavor. It is the greatest gift my grandmother ever gave me and she did it from her deathbed. Sometimes when I lack motivation and struggle, I consider what I would want, think, and wish from my own deathbed. I consider the impact I want to have on my loved ones, and the cultural legacy I want to leave.
I had the opposite experience when my grandparents died -- I watched everybody in my family cling on to ventilators, invasive treatments, and chemotherapy, for both of them to die painfully attached to tubes in an emergency hospital ward. My aunt whispering maniacally to my grandma: "don't go towards the light!" Family members talking over my grandmother's last words.
It taught me a lot too; that I want to be like your grandmother, and not like my family, when my time comes.
> I think a huge part of it isnt even corporatism, but social and cultural avoidance and fear of death.
These aren't mutually exclusive. It's like saying "I think a huge part of the desire for fashionable clothing isn't even fashion, but the fear of being ostracized or left behind by one's social circle." A natural source of fear and uncertainty is stoked by people who find opportunity to make a buck off it.
"The American Way of Death" is a good book to read in that vein, although it's about the pointless, blindingly expensive ostentation of US burial rituals. The book was very successful and well-regarded; didn't change a thing.
I have every intention to do the same. The only thing that gives me nightmares is to lose mental capacity, which it seems your grandmother was lucky to keep to the end. My aging friend circle keeps throwing around ideas of various dead man switches to cut short any kind of mental decline.
> culture ... is in denial about death. We hide it away,...
Karl Ove Knausgaard starts one of his books off by talking about this exact thing. He made an interesting observation about how we seem to try to keep death at or below ground level (a morgue will never be on the second floor) - literally but also figuratively.
A doctor friend of mine put it succinctly: let old people die; that's what they do. End-of-life interventions are not for benefit of the old, they are going to die anyway. It is an entirely perverse financial incentive that aligns with a positive "life preserving" incentive that fails to adjust to the nuances of natural human mortality. I believe this applies to the terminally ill as well. This is why most doctors refuse (non-palliative) treatment for terminal cancer diagnoses.
> This is why most doctors refuse (non-palliative) treatment for terminal cancer diagnoses.
I saw this claim a while back and looked it up and it didn't seem true. Very few people actually refuse non-palliative treatment entirely for cancer. And the few who do refuse are usually not doctors but rather alternative medicine enthusiasts. Modern treatment can extend the lifespan of many of those with terminal cancers for a couple of years with good quality of life, and few say no to that; those years can be very meaningful for many.
What doctors do frequently decline is treatment near the end of life that's overwhelmingly likely to be futile or result in a low quality of life.
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."
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.
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.
Greenpeace sued successfully to make it illegal. It's hard to imagine how anything can be a greater obstacle, regardless of whether there are additional obstacles- it's a brick wall.
The additional obstacles you've listed all do seem less significant and more surmountable than not being allowed to grow the crop at all. And I can't find any evidence of the yield or drought tolerance actually being worse.
Illegal in the Philippines. After years of struggle developing a product that (1) really worked and (2) anybody wanted. There are 200+ other countries in the world.
It's approved in the U.S., Canada and other countries but they don't sell it. Given that they are politicizing it so much you think they might grow 10 tons of it somewhere and sell small quantities of it so people could try it out ("get a $20 bag of rice and support its development") but (a) it defeats the narrative they're being victimized by Greenpeace and (b) people may or may not like the sensory characteristics.
I don't know how the GR2 trait itself impacts other agronomic characteristics but there is a principle that if an organism is spending energy on one thing it is going to have less for other things. A more definitely problem is that a small number of GR2 seed lines compete with a very large number of other rice lines. Even if the GR2 trait is neutral in other respects, the GR2 rice that is actually developed could be "ok" but not competitive with other seeds you could get.
In the US there is a staggering variety of Bt corn or Roundup-Ready soybean seeds because the technology has been licensed to and picked up by most of the big seed vendors so farmers can get seeds that perform well for them. Farmers want these crops because they help their bottom line. If somebody tries to ban them, they'll fight back.
PRRI doesn't have a lot of resources to develop a variety of optimized seeds, it doesn't have the deep relationships with seed vendors that (say) Monsanto has, it doesn't have a lot of enthusiasm from possible customers in the Philippines. If local farmers, public health authorities and such had organized to support it there could have been a different outcome. As it is PRRI comes across as another out-of-touch NGO.
There are all kinds of little silly things such as the fact that they will start charging you if you grow more than $10,000 worth of it. If they really are out to save people from illness, change the world, and normalize the idea of transgenic crops, they should be giving it away for free.
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.
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-comeba...
Related to this, many rural farms in the developing world grow heirloom crops of one kind or another. Classic examples of this are Peru's 30k varieties of Potato. Saying that Golden Rice is superior to all of the varieties of rice grown in the developing world seems like a stretch.
I think there is plenty of reason to be skeptical of do-gooder foreigners who think they know better than the locals, but IMO that describes Greenpeace here more than the golden rice project. They are banning it completely, taking agency away from local farmers and consumers. Also, most of their objections seem to stem from GM fearmongering disguised as environmental and nutritional concerns. I doubt that they would fight golden rice if it were a hybrid crop instead.
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.
"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.
> 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 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).
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. Hopefully a useful tool for anyone that is interested in participating in or tracking clinical trials.
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."
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. 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-...
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).
The current use case for Zeeq AI is really focused on monitoring for new trials or updated trials and not so much for finding trials at the moment.
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.
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.
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.
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.)
> 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.
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.
> 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.
Readit News
One of my saddest, but also most powerful, raw, and formative memories was watching my grandmother die when I was 12. Her lymphoma had relapsed and she chose to put her effort and energy into preparing for her death instead fighting medically. She was a strong woman and fully prepared her estate. She collected every document, listed every account, and wrote detailed instructions (Later, my dad would still find things like the pinkslip pre-signed and in the glove box of the car when he went to sell it.)
When her time was close, my family pulled me out of school for two weeks and we went to stay with her until she passed. I mostly played in another room, but when it was time, I was called in and we held hands and watched her last breaths, and listened to her death rattle together, and cried together. That was the first time I saw my father cry.
It was tremendously sad, of course, but also beautiful, because it was the culmination of a life well lived. I learned a lot that day about the fleetingness of our short lives , the value of agency, and the human endeavor. It is the greatest gift my grandmother ever gave me and she did it from her deathbed. Sometimes when I lack motivation and struggle, I consider what I would want, think, and wish from my own deathbed. I consider the impact I want to have on my loved ones, and the cultural legacy I want to leave.
It taught me a lot too; that I want to be like your grandmother, and not like my family, when my time comes.
These aren't mutually exclusive. It's like saying "I think a huge part of the desire for fashionable clothing isn't even fashion, but the fear of being ostracized or left behind by one's social circle." A natural source of fear and uncertainty is stoked by people who find opportunity to make a buck off it.
"The American Way of Death" is a good book to read in that vein, although it's about the pointless, blindingly expensive ostentation of US burial rituals. The book was very successful and well-regarded; didn't change a thing.
Karl Ove Knausgaard starts one of his books off by talking about this exact thing. He made an interesting observation about how we seem to try to keep death at or below ground level (a morgue will never be on the second floor) - literally but also figuratively.
Bless you and her.
I saw this claim a while back and looked it up and it didn't seem true. Very few people actually refuse non-palliative treatment entirely for cancer. And the few who do refuse are usually not doctors but rather alternative medicine enthusiasts. Modern treatment can extend the lifespan of many of those with terminal cancers for a couple of years with good quality of life, and few say no to that; those years can be very meaningful for many.
What doctors do frequently decline is treatment near the end of life that's overwhelmingly likely to be futile or result in a low quality of life.
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."
Canadian Paralympian: I asked for a disability ramp - and was offered euthanasia
https://www.telegraph.co.uk/world-news/2023/09/02/canada-par...
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.
The additional obstacles you've listed all do seem less significant and more surmountable than not being allowed to grow the crop at all. And I can't find any evidence of the yield or drought tolerance actually being worse.
https://www.nature.com/articles/s41598-021-82001-0
It's approved in the U.S., Canada and other countries but they don't sell it. Given that they are politicizing it so much you think they might grow 10 tons of it somewhere and sell small quantities of it so people could try it out ("get a $20 bag of rice and support its development") but (a) it defeats the narrative they're being victimized by Greenpeace and (b) people may or may not like the sensory characteristics.
I don't know how the GR2 trait itself impacts other agronomic characteristics but there is a principle that if an organism is spending energy on one thing it is going to have less for other things. A more definitely problem is that a small number of GR2 seed lines compete with a very large number of other rice lines. Even if the GR2 trait is neutral in other respects, the GR2 rice that is actually developed could be "ok" but not competitive with other seeds you could get.
In the US there is a staggering variety of Bt corn or Roundup-Ready soybean seeds because the technology has been licensed to and picked up by most of the big seed vendors so farmers can get seeds that perform well for them. Farmers want these crops because they help their bottom line. If somebody tries to ban them, they'll fight back.
PRRI doesn't have a lot of resources to develop a variety of optimized seeds, it doesn't have the deep relationships with seed vendors that (say) Monsanto has, it doesn't have a lot of enthusiasm from possible customers in the Philippines. If local farmers, public health authorities and such had organized to support it there could have been a different outcome. As it is PRRI comes across as another out-of-touch NGO.
There are all kinds of little silly things such as the fact that they will start charging you if you grow more than $10,000 worth of it. If they really are out to save people from illness, change the world, and normalize the idea of transgenic crops, they should be giving it away for free.
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-comeba...
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.
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.
Dead Comment
The FDA maintains an open database of clinical trials that is accessible over at 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-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. Hopefully a useful tool for anyone that is interested in participating in or tracking clinical trials.
[0] https://clinicaltrials.gov/data-api/api#extapi
[1] https://aact.ctti-clinicaltrials.org/
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.
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.
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-...
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.
https://www.npr.org/2010/09/24/130104047/who-decides-the-pri...
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.