Bizarrely, the post on Marginal Revolution links to a post from 5 days ago, and it's easy to confirm that Jake was still alive when that post was published. (And, apparently, for almost a week afterwards.) The gofundme appears to be the only source that states he's died, and the MR report doesn't even mention it. (Other than to include a link to it in a quote from someone else.)
Indeed. I had never even heard of Jake before the post a few days ago about him going into hospice, so I had no personal attachment to the guy. But even so, reading about what he and his loved ones went through struck me as brutally unfair. Nobody should have to suffer (or watch someone they love suffer) like he did. Not just the disease itself but the extreme measures he had to go through just to try to keep it at bay. May he rest in peace.
Within each form of suffering endured by man, and at the same time at the basis of the whole world of suffering, there inevitably arises the question: why? It is a question about the cause, the reason, and equally, about the purpose of suffering, and, in brief, a question about its meaning. Not only does it accompany human suffering, but it seems even to determine its human content, what makes suffering precisely human suffering.
It is obvious that pain, especially physical pain, is widespread in the animal world. But only the suffering human being knows that he is suffering and wonders why; and he suffers in a humanly speaking still deeper way if he does not find a satisfactory answer. This is a difficult question, just as is a question closely akin to it, the question of evil. Why does evil exist? Why is there evil in the world? When we put the question in this way, we are always, at least to a certain extent, asking a question about suffering too.
Thanks - it’s so helpful for them to have documented this for us to understand a very complex and opaque process. All while they were under extreme stress.
I've experienced this from both sides. First with my father who was dying of cancer and was informed that while some promising treatments were in trials, he was not eligible. Balancing potential harm from unapproved drugs vs. certain death within 12 months feels like an easy task.
On the other side, my wife worked for a mid-sized pharma in the past. After several rounds of trials that each cost tens of millions of dollars, the FDA couldn't be convinced to approve the drug, despite hearings full of people who were either alive because the drug saved their lives or were hoping to have it approved for future use. After a couple more trials, the company ended up cutting losses and moving on to something else. Again, it feels like there should be some pathway here. Such a drug shouldn't be the first option if others are available, but if there's nothing else or other treatments haven't worked, what's the real harm in letting someone who's going to die anyway give it a shot.
Part of the harm is in people no longer trusting drugs. We're very fortunate to be able to get prescribed a drug and have certainty the risk-reward tradeoffs have been evaluated to extreme depth by experts far more equipped than we are.
You are past of the reason the world is a worse place than it could be. Without people like you defending excessive caution as good for the PR of drug regulatory agencies millions of people who are dead would be alive, possibly tens of millions.
Because those rules are in place for reasons. And some of those reasons are to prevent drug companies from turning the poor into lab rats with no regard to their safety. And I guarantee you, you let "terminal" patients skirt rules, there will be a hell of a lot more "terminal" patients.
And I'm sure there are some non-regulation reasons to limit various therapies. They are trying to see if thing X can help. And if thing X only helps when combined with thing Y, you don't exactly get that information when focusing on thing X. Or the worse scenarios of thing Y making thing X ineffective or harmful.
This was written from a very emotional place, and understandably so. But that state means they are not exactly in a position to consider all the reasons. And it must be frustrating as hell to have tried 40 things that didn't work to only be denied the 41st because you tried too many other things. Especially if that 41st thing turns out to be something that works.
But I don't think the answer is let terminal patients take whatever they feel like.
> But I don't think the answer is let terminal patients take whatever they feel like.
I don't think anyone has the moral authority to tell anyone else what they can take, especially terminal patients.
I do, however think governments have a responsibility to regulate how drug companies conduct trials so as to minimize harm to patients. This probably has the same outcome in practice, but I find the moral distinction important.
I don't think it's just that. Imagine the kind of money the more unscrupulous could make selling sugar pills for $100 each saying that it's the cure for whatever is killing you.
Desperation can cloud even the most rational of minds.
People selling stuff are in the same category as the drug companies; I have no objection to regulating them, and imprisoning them for fraud, with an enhanced penalty for preying on particularly vulnerable people in the case you described.
Of course they can. You take any molecule, put it in a pill bottle, disclose there's no clinical evidence of its efficacy and you can put it on store shelves. There are thousands of such products on the market today. Stores will often put these in a section called "Supplements" so that people don't mistake them for medications which have proven their efficacy.
These molecules generally don't do anything of substantial value because it's incredibly difficult and expensive to produce a molecule that does anything of value. If you're going to undertake that billion dollar effort, then you're going to want consumers to trust it, pharmacies to carry it (near the medications, not the unproven supplements), and most critically: insurers to pay for it.
You do not have to seek FDA clearance to sell your molecule to consumers. To achieve marketing objectives necessary to recoup the development costs of a working molecule, you choose to seek FDA clearance.
What exactly do you think distinguishes an "experimental drug" that's not going to be put through trials from the thousands of other unproven molecules typically sold on aisles labeled "Supplements" or behind the counter at gas stations? Your hope, belief, or presumption that it actually works?
If the manufacturer creates the substance with the intention of treating a disease, then the substance falls under FDA restrictions, irrespective of whether they make explicit claims about its medical benefits.
Yeah it happens a lot more than you think - the entire everything - about USA pharma is absolute evil.
I've pissed off a lot of people in my statements about how chemists are a very unscrupulous profession, and many are downright evil. (you need to really learn about the history of Sandoz, Bayer, Novartis, Du Pont, J&J, Monsanto, and all the others.... <--- LONG history of chemical weapons, chemical poisons, super-sites, deformed babies.
The lack of regulation and oversight in the chemical industry has enabled these scandals to occur.
If I recall correctly, that is why it is illegal for clinical trials to charge for experimental and unapproved medication. The patient's "payment" is in taking the risk, and the 'pay-off' towards the experimenter is that it helps get their drug approved to a saleable state, if it works. That part sounds like a good ethical system design to avoid perverse incentives - the drug maker doesn't gain anything unless it works and even then it is indirectly.
Is it illegal? Or does it just not make any sense to ask someone taking an experimental drug to pay you for it? It's ridiculously hard to get people to participate in a trial even when pharma is paying them (granted though, also under the same ethics umbrella, such payments are not supposed to incentivize a decision to participate, only to remove the disincentives to participation, like having to pay for Ubers to/from the trial site).
Actually the way that we prevent pharma companies from using trials to commit fraud of this type is by tightly (very tightly) controlling the language they use to describe drugs that are still under evaluation. Basically every sentence that a researcher makes to a trial participant needs to pass an ethics review board to make sure it's not overselling the promise or underselling the risk.
> I don't think anyone has the moral authority to tell anyone else what they can take, especially terminal patients
Yet euthanasia is a very fraught subject in the land of the free. The country may be coming less religious, but the puritanical values remain; every life is precious, even one that's in unbearable, irreversible agony, and those who suffer probably deserve it.
That's really the perspective I'm coming from. When I say the answer isn't to let terminal patients take whatever they feel like, it's to say that they shouldn't be the one to make the decision that a developing drug is safe enough for them to trial.
Just because one is terminal, it does not make one an expert in medicine or pharmaceuticals. So it shouldn't be used an exception to the processes in place.
I don't understand this. Society at large supports assisted suicide and a host of other personal choices that unquestionably harm the health of the person making them. Why draw a line at potential treatments for illnesses? Why can't someone choose to be a guinea pig for the sake of advancing the science?
My guess is that consumer safety is being used as an excuse by those who want to control the market via regulatory gatekeepers, to reduce competition. But regardless of what's motivating it, it's illiberal.
Killing someone who is trying to live is a bit at odds with compassion.
Desperation can make us short-sighted and reckless. It’s why most people who are prevented from committing suicide often don’t try again. It’s an act of desperation. We shouldn’t allow drug companies to exploit desperate people.
Assisted suicide has several hurdles you have to jump through. You have to be completely sure from a sound state of mind.
They're going to die anyway. This might give them a non-zero chance at survival, and at the very least let them contribute to medical science by being a test case for an experimental treatment.
As someone that works in drug discovery as an academic and has patented drugs, I can tell you that the current process is biased way too far towards safety for optimal life saving outcomes if you look at it in a cold utilitarian way. A lot of lives would be saved by fast-tracking the approval process, despite the fact that there would also be an increase in negative outcomes.
However, it is probably not socially or politically tenable to kill or harm people with experimental drugs even if it saves a greater number of people. Realistically, I don't see things changing much.
I don't think its fair to dismiss this perspective as "written from an emotional place." As Alex Tabarrok wrote above, both Jake and his wife (a medical doctor) were involved with this issue before his diagnosis.
I also love that quote "science is the belief in the ignorance of experts" - I wish that concept were more clear to people that are lay people interested in science, but end up practicing scientism in a way that discourages actual scientific thinking.
I am not going to share my work on here- I wish to remain anonymous on here, but am also outspoken about this topic in my public professional persona.
Some who are terminally ill want to be lab rats. You get one last shot at surviving and, perhaps more importantly, you also get to leave the world a little better by helping advance drug science. I don't think "lab rat" conveys the courage it takes to participate in a clinical trial and the gratitude we should have for them.
May Jake rest in peace and may his memory be a blessing to his wife and daughter.
Their views on clinical trials were understandable given the circumstances. Those regulations were written in blood, miscarriage/birth defects, autoimmune conditions, genetic damage, and other horrors. This is a complicated ethical topic because clinical trials can harm patients and families of patients as much as they can help, and sometimes many years after the fact of the trial. It's not an appropriate discussion in a memorial post.
> It's not an appropriate discussion in a memorial post.
When else do we discuss it? This is bound to just disappear into history and the government will carry on with business as usual. I feel now’s the time to get people educated and discussing it at depth, when they care about it.
It's impressive to me that Jake managed to remain involved and communicative until so near the end. I withdraw into a personal shell when I get so much as a hang nail. Respect.
As the romantic partner of someone going through a degenerative disorder and as someone who watched my grandmother be consumed by dementia I can say that it's something most people develop over time instead of being born good at.
If a hang nail is bad enough to make you withdraw then that means you don't have a lot of experience of getting sick to the point where you had to push through as it hasn't happened a lot. Over the course of the 14 years I've had with my partner (started year 15 last month!) I've seen how she's had to adapt to remain involved and communicative - and a lot of days, that's a struggle for her that she puts herself through to stay connected to the people she loves.
tl;dr: It's an adaptation, and I'm glad that you've not had to build that adaptation.
Fully agree. I live with cronic pain and people ask me if I'm in pain, I say yes, then they want to stop whatever we're doing and I say no, if I stop living because of this, I have nothing else left but the pain. So yeah, you get used to doing things with it. Some days it's impossible and I indeed do nothing but most days, meh.. Screw it, I have stuff I actually want to do.
Obama gave an answer in his Comedians in Cars Getting Coffee episode that stuck with me.
Seinfeld asked something like 'How do you deal with constant annoyances, all the time, when you're president?'
And Obama replied 'I expect it's similar to what you do -- you fall in love with the work. Sure, sometimes it's painful, annoying, backwards, foolish, etc. But in the end you fall in love with the work, and it saves you.'
That defined purpose in a way I'd never thought about it, and probably undergirds every religion.
It also made me try to open my heart more to people dealing with chronic pain or mental health issues, in terms of their subjective effort. Objectively, it may look like they're just doing {normal thing}, but subjectively that may be requiring 10x or 100x effort from them. And that effort (the work) deserves its own respect, independent of outome.
Reading his post was like a gut punch, and I didn't even know the guy. It breaks your heart to hear someone speak with certainty about their own demise, and to face it with such grace and clarity makes it all the more heart-wrenching. It sounds like he was with his family in his final moments, and I hope he wasn't in much pain. Rest in peace.
Your comment reminds me about Polish movie "Life as a Fatal Sexually Transmitted Disease", which is a story of a doctor dying from cancer. Some variations of this title were semi-popular in Poland in early 2000s.
About 160,000 people die each day on this planet. It’s probably safe to assume that a good number of them are facing it with grace and clarity. The fact that many aren’t able to, for one reason or another, is maybe more heart-breaking, in a way.
I just relatively recently found his posts through HN. Even though I've only read something like 5-8 posts, I quickly became "attached", for lack of a better word, as I truly enjoyed the writing and openness. It brought me closer to that kind of situation, and the people in it, than I've (yet) ever been. I wish them all the best.
I've been following his story for quite a while. I knew this was coming when I opened up Hacker News today; I just had that feeling — not that it made seeing it in type any easier.
He had a way with words that I was impressed to see him cling onto until the very end.
Impressive to see the positivity that both him and his wife Bess maintained in their last posts, despite the constant pain and oncoming death. Real strength.
Rest in Peace Jake, and I wish you the best on the path forward Bess!
I think the whole story about Jake touched a lot of and in a way it kind of felt like we knew him a bit. I told my wife about him and what his brother and his wife had written, and their circumstances. Now I will tell her tomorrow that the guy died and we will both be sad about it.
He was an active HN user and a writer, he had a very active blog for many years, and he and his wife had been documenting their struggles during his disease; some of those articles were voted high here and had a lot of discussion around them. So in the microcosm of HN, it's relevant news.
Yes. He was an academic who wrote about writing, authored two inconsequential novels, and was very open about his cancer. Many people here interacted with him or his work, but there’s no shame if you didn’t. A black bar on HN means people asked for it, it’s not a new entry on life’s high score table that needs to be rigorously justified.
I've vouched this comment. I believe it was misinterpreted as suggesting there shouldn't be a black bar, which would be flaggable as flame bait. However, the black bar either wasn't there or they hadn't noticed it (it can be hard to see on mobile or if your topcolor is dark), and they were suggesting it should be.
I myself took this impression initially. Posting this in case someone else is confused and tempted to flag.
@dang I don’t know what the criteria for the black top banner are, but Jake would have earned it, IMHO. I never met him personally, but his writing deeply moved me, and others too, judging from the reactions.
Profound condolences to his family and friends. Reading about his journey was heart-breaking, all the more so knowing that he would never be able to hold or know his daughter.
219 comments
[ 5.5 ms ] story [ 258 ms ] threadMay he rest in peace.
Bizarrely, the post on Marginal Revolution links to a post from 5 days ago, and it's easy to confirm that Jake was still alive when that post was published. (And, apparently, for almost a week afterwards.) The gofundme appears to be the only source that states he's died, and the MR report doesn't even mention it. (Other than to include a link to it in a quote from someone else.)
Rest in Peace, Jake.
It is obvious that pain, especially physical pain, is widespread in the animal world. But only the suffering human being knows that he is suffering and wonders why; and he suffers in a humanly speaking still deeper way if he does not find a satisfactory answer. This is a difficult question, just as is a question closely akin to it, the question of evil. Why does evil exist? Why is there evil in the world? When we put the question in this way, we are always, at least to a certain extent, asking a question about suffering too.
https://www.vatican.va/content/john-paul-ii/en/apost_letters...
https://bessstillman.substack.com/p/the-drugs-killing-dying-...
On the other side, my wife worked for a mid-sized pharma in the past. After several rounds of trials that each cost tens of millions of dollars, the FDA couldn't be convinced to approve the drug, despite hearings full of people who were either alive because the drug saved their lives or were hoping to have it approved for future use. After a couple more trials, the company ended up cutting losses and moving on to something else. Again, it feels like there should be some pathway here. Such a drug shouldn't be the first option if others are available, but if there's nothing else or other treatments haven't worked, what's the real harm in letting someone who's going to die anyway give it a shot.
I'm not sure how trust would be eroded by the failure of an experimental drug to treat a terminal case where no other drugs are working.
Because those rules are in place for reasons. And some of those reasons are to prevent drug companies from turning the poor into lab rats with no regard to their safety. And I guarantee you, you let "terminal" patients skirt rules, there will be a hell of a lot more "terminal" patients.
And I'm sure there are some non-regulation reasons to limit various therapies. They are trying to see if thing X can help. And if thing X only helps when combined with thing Y, you don't exactly get that information when focusing on thing X. Or the worse scenarios of thing Y making thing X ineffective or harmful.
This was written from a very emotional place, and understandably so. But that state means they are not exactly in a position to consider all the reasons. And it must be frustrating as hell to have tried 40 things that didn't work to only be denied the 41st because you tried too many other things. Especially if that 41st thing turns out to be something that works.
But I don't think the answer is let terminal patients take whatever they feel like.
I don't think anyone has the moral authority to tell anyone else what they can take, especially terminal patients.
I do, however think governments have a responsibility to regulate how drug companies conduct trials so as to minimize harm to patients. This probably has the same outcome in practice, but I find the moral distinction important.
Desperation can cloud even the most rational of minds.
Fraud is one risk -- the much bigger one is well-intentioned people trying to save lives seeing positive outcomes where there aren't any.
These molecules generally don't do anything of substantial value because it's incredibly difficult and expensive to produce a molecule that does anything of value. If you're going to undertake that billion dollar effort, then you're going to want consumers to trust it, pharmacies to carry it (near the medications, not the unproven supplements), and most critically: insurers to pay for it.
You do not have to seek FDA clearance to sell your molecule to consumers. To achieve marketing objectives necessary to recoup the development costs of a working molecule, you choose to seek FDA clearance.
What exactly do you think distinguishes an "experimental drug" that's not going to be put through trials from the thousands of other unproven molecules typically sold on aisles labeled "Supplements" or behind the counter at gas stations? Your hope, belief, or presumption that it actually works?
Yeah it happens a lot more than you think - the entire everything - about USA pharma is absolute evil.
I've pissed off a lot of people in my statements about how chemists are a very unscrupulous profession, and many are downright evil. (you need to really learn about the history of Sandoz, Bayer, Novartis, Du Pont, J&J, Monsanto, and all the others.... <--- LONG history of chemical weapons, chemical poisons, super-sites, deformed babies. The lack of regulation and oversight in the chemical industry has enabled these scandals to occur.
Watch the Devil We Know, for example about Teflon
https://i.imgur.com/vGIcL0d.png
--- [0] https://www.forbes.com/sites/conormurray/2023/09/12/heres-wh...
Actually the way that we prevent pharma companies from using trials to commit fraud of this type is by tightly (very tightly) controlling the language they use to describe drugs that are still under evaluation. Basically every sentence that a researcher makes to a trial participant needs to pass an ethics review board to make sure it's not overselling the promise or underselling the risk.
Yet euthanasia is a very fraught subject in the land of the free. The country may be coming less religious, but the puritanical values remain; every life is precious, even one that's in unbearable, irreversible agony, and those who suffer probably deserve it.
Just because one is terminal, it does not make one an expert in medicine or pharmaceuticals. So it shouldn't be used an exception to the processes in place.
My guess is that consumer safety is being used as an excuse by those who want to control the market via regulatory gatekeepers, to reduce competition. But regardless of what's motivating it, it's illiberal.
Desperation can make us short-sighted and reckless. It’s why most people who are prevented from committing suicide often don’t try again. It’s an act of desperation. We shouldn’t allow drug companies to exploit desperate people.
Assisted suicide has several hurdles you have to jump through. You have to be completely sure from a sound state of mind.
However, it is probably not socially or politically tenable to kill or harm people with experimental drugs even if it saves a greater number of people. Realistically, I don't see things changing much.
I don't think its fair to dismiss this perspective as "written from an emotional place." As Alex Tabarrok wrote above, both Jake and his wife (a medical doctor) were involved with this issue before his diagnosis.
I am not going to share my work on here- I wish to remain anonymous on here, but am also outspoken about this topic in my public professional persona.
Since we asked you to stop and you just did another entire thwack of it, I've banned the account.
Please don't create accounts to break HN's rules with. It will eventually get your main account banned as well.
Their views on clinical trials were understandable given the circumstances. Those regulations were written in blood, miscarriage/birth defects, autoimmune conditions, genetic damage, and other horrors. This is a complicated ethical topic because clinical trials can harm patients and families of patients as much as they can help, and sometimes many years after the fact of the trial. It's not an appropriate discussion in a memorial post.
When else do we discuss it? This is bound to just disappear into history and the government will carry on with business as usual. I feel now’s the time to get people educated and discussing it at depth, when they care about it.
"Starting hospice. The end" - 1178 points 4 days ago https://news.ycombinator.com/item?id=41157974
How to let go: Jake's life ends as his daughter's begins
https://news.ycombinator.com/item?id=41174621
If a hang nail is bad enough to make you withdraw then that means you don't have a lot of experience of getting sick to the point where you had to push through as it hasn't happened a lot. Over the course of the 14 years I've had with my partner (started year 15 last month!) I've seen how she's had to adapt to remain involved and communicative - and a lot of days, that's a struggle for her that she puts herself through to stay connected to the people she loves.
tl;dr: It's an adaptation, and I'm glad that you've not had to build that adaptation.
Seinfeld asked something like 'How do you deal with constant annoyances, all the time, when you're president?'
And Obama replied 'I expect it's similar to what you do -- you fall in love with the work. Sure, sometimes it's painful, annoying, backwards, foolish, etc. But in the end you fall in love with the work, and it saves you.'
That defined purpose in a way I'd never thought about it, and probably undergirds every religion.
It also made me try to open my heart more to people dealing with chronic pain or mental health issues, in terms of their subjective effort. Objectively, it may look like they're just doing {normal thing}, but subjectively that may be requiring 10x or 100x effort from them. And that effort (the work) deserves its own respect, independent of outome.
(He may have discussed it earlier on HN, I haven't gone through his history to check on this.)
Once he began, however, he continued to the bitter end. And yes that is commendable.
But Ill never for get what he was claimed to have said as his last words: "Oh.. wow"
Spend time with your loved ones.
I like to think some day his daughter will appreciate getting to go through his HN comments & such.
He had a way with words that I was impressed to see him cling onto until the very end.
Thanks Jake, you'll be missed.
His blog post recently was moving and eye-opening. If you are in the headspace for tough topics, read it and you won't regret it.
Rest in Peace Jake, and I wish you the best on the path forward Bess!
Googling his name doesn't help either.
Who is he?
https://www.linkedin.com/in/jake-seliger-03363819
RIP Jake.
I know that he wasn't a big deal, outside this community, but within HN, his posts were kinda awesome (and heartbreaking).
Email mods for any such requests:
<https://news.ycombinator.com/item?id=41203566>
I myself took this impression initially. Posting this in case someone else is confused and tempted to flag.
At the time I wrote it (and the wording is bad, in hindsight -I probably should have said “Doesn’t”), the bar was definitely not there.
I know Google has a nice tool to share your account after you are gone, as for the rest, I have no plans.
Anyone has good suggestions on managing one's own digital legacy?
* What to Do Before You Die: A Tech Checklist – https://archive.is/6vjqQ
* Cheat Sheet For If I’m Gone – https://archive.is/lnWX6 – https://github.com/christophercalm/if-im-gone/blob/main/exam... (HN discussion: https://news.ycombinator.com/item?id=31748553)
"@dang is a no-op": <https://news.ycombinator.com/item?id=36526450>
(Edit: I've emailed the suggestion, and we now have a black bar.)