Hi everyone,
This is Bess, Jake's wife. I just want to say how deeply touched I am to see how much Jake and his writing are appreciated here on HN. The intellectual online community which made up a big piece of his life for so long was important to him, as was having a positive influence on others, and it would have meant so much to him- as it does to me- to see the impact he made. Thank you for the people who reached out while he was still alive to make sure he knew just how large that impact was.
I've lost the love of my life, as well as my thinking and writing partner, and everything is strange and disorienting right now. It's a comfort when nothing feels comfortable to know how appreciated he was and still is. As soon as I'm able, and for anyone who is interested in joining the efforts, I promised him I'd continue the push for FDA reform, and to try to find ways to improve agency for cancer patients so that other people in his position might suffer less than he did. I've never known a braver person. I'll miss him forever, but won't stop trying to keep his legacy alive.
Please feel free to reach out anytime (I'm at drbstillman@gmail.com). Thank you also for all the well wishes for myself and Athena, who I hope will be just like her Dad.
I didn’t know Jake’s work, but I’m going on vacation tomorrow and this thread has moved me to get copies of his books and start reading them while I’m away. I’ll be thinking of your family as I make my way through them.
Nothing can really help/console in this moment. But so many of us are thinking about him. I appreciated his blog, his strength. It will go on and make a difference.
If you ever need anything my contact details are on my profile and I would be more than happy to help in any way that I can. Technically, financially (I'm sure you have much closer resources, but the offer is there regardless).
His essay on agenticness especially strikes me as hugely insightful and underappreciated. It was submitted several times to HN but saw little discussion:
Jake's wife, now widow, Bess, blogs at Everything is an Emergency: <https://bessstillman.substack.com>. That also details the cancer / caregiving experience, from the point of view of a wife, caregiver, expectant mother, and emergency-room doctor.
"...I got a partial glossectomy in Oct. 2022. Mine had some high-risk features, but I was assured that, with radiation therapy, it wouldn’t recur (Bess recalls the exact words being, “Don’t worry, this won’t be what kills you”). ... In retrospect, however, I obviously should’ve been given chemo with the radiation, but at the time I was pleased to not need chemo, and I foolishly didn’t look deeper into the data on recurrence—which is common for HNSCC—and I didn’t seek second opinions. Some of those second opinions might’ve said: “Get the chemotherapy."
"By July 21, less than two months later, another six to eight tumors had grown. If I’d known how things would shake out, I likely would’ve pivoted to chemo and clinical trials the moment the surgical biopsy came back. But I didn’t and couldn’t."
Cancer is insidious in all kinds of ways. One in particular is that insight into the current and possible state(s) of a tumor are are really difficult to assess. With all our current imaging and testing capabilities, the human body is still largely a black box. Especially after multiple surgeries, distinguishing new tumour growth from scar and necrotic tissues is difficult.
And ... for suitably aggressive tumours, even what appears to be complete removal ("clean margins") ... often isn't, and what minuscule remnants remain can grow back with discouraging ferocity. I'd visited a friend a few weeks after they'd had a growth removed, and subsequently begun radiation treatments and chemotherapy. In that brief interval between surgery and treatment the lips of the incision had spread apart by several centimetres. That turned out to be an ominous portent.
Second-guessing is also par for the course, and without comparative study it's hard to know if more immediate or aggressive treatment (e.g., immediate chemo in Jake's case) might have helped. Looking up survival stats on particular cancers can be illuminating. The one which took my friend three decades ago still has a < 20% five-year survival.
My dad discovered he had a very large solid tumor (a form of soft tissue sarcoma) in 2022 and due to the lack of solid data or population size no oncologist could even give a hunch as to the growth rate. Whether it had been developing slowly for a decade before it finally became symptomatic over a few months, or the terrifying possibility it was extremely fast growing during the year or so he began to notice symptoms which suddenly emerged and then steadily got worse.
Due to lack of evidence for chemo having any benefit for his cancer with devastating impact on quality of life he was instead put into several months of proton radiation therapy, a Keytruda clinical trial, and then surgery all within about 6 months. After about 7 hours into surgery we got a call from the lead surgeon who told us they were unable to get clean margins due to proximity to the bone but spent an extra several hours removing all visible cancerous which was the best they could do before they had to hand it over to the reconstructive surgeon. That was a horrible gut punch and I can still picture the expressions on my brother and mother's face as we processed what we were hearing.
He survived the surgery, recovered impressively quickly, but we were all terrified waiting for the first 3 month follow up scan expecting the worse given the lack of margins and potential of being extremely fast growing. But it was clean, and so was the next 3 month, and he's now through his 7th or so clean scan I believe.
I had read so much about survival rates but the data for his specific cancer was all so poor plus confounded by his tumor being huge (data says that's very bad) but no systemic spread or to adjacent organs (data says that's very good), no clean margins (bad) but no remaining tumor tissue (less bad).
Eventually I realized all the time I spent digging through PubMed for any scrap of a data point hadn't actually given me any insight, reassurance or had any predictive value whatsoever. Which was tough to accept given how my brain is wired. So all I can really do now is be grateful for the extra time he's already had and the possibility that seemed so unlikely pre-surgery that he may even have many more, but the future will always be unknowable either way and not worth obsessing about.
It sounds like the reading helped you, though. Maybe it gave you a purpose or it focused your worry into something that felt productive. Either way, you would only be able to conclude that the reading wasn't productive by doing the reading.
Basically, I understand and sympathize with why you went down that rabbit hole. I have gone down those rabbit holes for far less compelling reasons.
Also, I have similarly concluded that medical literature's probabilistic nature means it has little bearing on the N=1 of a personal medical issue.
Glad to hear your dad is an outlier. Here's to more clean scans!
Thanks! and yes I think you’re right that it did help to occupy my mind at least. By the end when I hit a wall unable to find anything new it just made me look back in a more negative light than was actually true at the time.
Having gone through similar exhaustive research myself in the past, and undoubtably in the future as well ....
... one thing that such an exercise does do is to give you some reassurance that you're not letting anything slip by. That you did what you could, and that you found all available best current information.
Sometimes all that provides is a negative result, or a neutral result, e.g., "there's nothing more that we can do".
But at least you know that having done so, which may bring its own comfort.
I still periodically do scans on literature of a decades-old experience I'd been proximate to. Then, in the moment, there was always the hope for some incipient breakthrough. What I've learned is that years and years and years later there really hasn't been, and the principal chemotherapies actually date to WWI chemical warfare agents. (Medical history is ... weird.)
Another viewpoint is that it might be possible to marshal effort into research on some condition or another. I've also seen some of those attempts, often with great fame and fortune behind them (Reeves on spinal injuries, Fox on Parkinsons, amongst the better known). These have made some progress, but often only marginal and slowly over time. Other instances, notably of infectious disease, have been more profound (polio, smallpox, HIV/AIDS, cervical cancer, ...).
Predicting where and when breakthroughs might occur is desperately hard.
Thanks for that perspective, I now realize in my mind I completely glossed over the fact that my dad ultimately got proton therapy instead of traditional radiation because of my research. I found a paper comparing proton vs gamma radiation for soft tissue sarcomas and went down a rabbit hole. His oncologist at OHSU was very supportive of the idea and it all seemed to perfectly fall in line with my coping strategy believing technology had to have advanced somehow somewhere and we just needed to find it.
No way to know for sure whether that actually improved his quality of life vs gamma or was more effective but I believe it had to have helped and gave him and us more confidence he was getting the most cutting edge treatment modern medicine had to offer.
My dad was an early adopter of basically every technology trend going back to the first handheld sized cell phones and I could tell it gave both him and I some comfort being able to endlessly read about this brand new promising tech. And gave him some new optimism he might not inevitably lose his entire quality of life like his mother’s last few years of miserable chemo before her cancer ultimately killed her. The combination of Keytruda and proton radiation took a toll on him but he was still able to keep up with his routine of jogging and swimming a couple times a week which meant a lot to him.
Looking for proton centers then led my parents to the Fred Hutch Cancer Center in Seattle [1] who both had a proton therapy center and were conducting research on soft tissue sarcomas which led to enrolling him in the Keytruda trial that was desperate for eligible patients almost overnight.
My parents felt so much more trust and confidence there vs his original OHSU oncologist who made of point of emphasizing that my dad’s subtype of cancer wasn’t something they really had experience with or a specific treatment plan beyond the generic cancer treatment checklist.
I guess I ultimately did find something tangible and my medical techno optimism wasn’t purely escapism. So maybe it wasn’t as futile as it felt by the end, re-reading the same research over and over for months on end and still unable to form a mental model of the severity and most likely outcomes/survival odds for my dad.
The earlier posts wishing for more aggressive treatments in the past should be read in conjunction with later posts about the realities of overtreatment.
One of the difficult realities of cancer treatment is that everything comes with tradeoffs. It can be frustrating to work with doctors who aren't eager to apply every possible treatment at the earliest possibility, but those doctors also know the downsides and risks of those same treatments.
As I'd noted above, I think that's the most valuable and insightful article of Jake's series. Some really powerful messages, both on the medical side (what does and doesn't work, and how and why) and the psychological one (people in desperate circumstances virtually always cling to hope and agency).
(I'm wanting to do a proper write-up of that but am still organising my own thoughts. Meantime I can just strongly urge people to read the piece.)
> Not looking into that thing on my tongue in July 2022, when I first noticed it, but that is very specific to me and probably not generalizable... I got a partial glossectomy in Oct. 2022
This one hits close to home. My dentist at the time misdiagnosed tongue cancer as a “reddish lesion, w/ possible tongue biting,” and this was only after I pointed it out to him at the end of a routine appointment. It wasn’t correctly diagnosed until further prodding from me 3 months later. By some estimates, that delay increased my chance of death by 30%, and the cancer has since progressed from stage 2 to stage 4.
I'm interested in his vague comments about age and how saying age is just a number is coping. Do you know what he might be referring to in his life, or of any posts he's made where he talks about that sort of thing?
This is Jake’s sister. He was reading and replying to as much as he could up until the end. He loved this community and would in turn be touched by this entire thread. Thank you all who supported him and read and shared his writing. He said it was bittersweet to go out on top.
I'm so sorry. I only learned about Jake due to his post the other day. I understood this was coming but still felt shock and sadness when I learned just now he has passed. Wishing you much strength.
The craziest thing to me is he was still posting up to the very end. I've seen this multiple times in end-stage cancers, my grandfather's pancreatic cancer, he seemed "fine" (other than looking incredibly sick) til the last ~12 hours or so - he was even doing some yard work the day or two before he died. He knew the entire time how much time was left, too. I don't know why I find this so crazy, other than I hope I never have to go through it - you're very aware of what's going on for a long, long time up until the end.
Yes I remember the shock to hear that The Hermit, who kinda run The Register forums, died on the same day I had a chat with him. He quietly messaged me to give me some advice that was spot on. I had no idea and there was no hint that he was at the tail end of a protracted illness. They closed the forums and the website continued to change and be less of a community after that.
i’ve come to believe that we’re more terrified of a situation while we’re not in it. once in there, and especially when there’s no way out, our bodies make the necessary adjustments for the new normal. and soon our minds/being follow. it’s often characterized as extraordinary strength by onlookers when in fact the person going through the experience had no way out. in my mother tongue, we have a proverb which roughly translates to ‘bravery is situational.’ therefore there are no cowards, just people without the necessary conditions to demonstrate bravery. if you’re lucky, you find it.
putting this in this context was helpful, thank you. I have a few chronic medical conditions that when people learn about it sometimes remark “i dont know how you deal with that” and the answer really is a shrug and “there’s no choice.” humans are good at adapting for sure
IMHO it’s because in our imagination anything is possible, we can imagine the bad situation in more and more elaborate and complicated scenarios.
And we can’t see beyond the bad situation.
While once we are in the situation we can do very practical things and have agency to react to and improve our situation.
I once read a French „practical philosopher“ who expressed it much better than me, but yea essentially the most terrifying situations are in our imagination.
I think thats why cancer is such a vicious illness to have a loved one experience. Its a long drawn-out suffering, with an inevitability at the end of it. The body shuts down gradually as the cancer wins out. For my sister it was the same with 'good days' vs 'bad days'. At first bad days were the minority and over time the ratio changed.
A sister's friend's mother had a very aggressive cancer that was diagnosed and in 10 days killed her. In a twisted way, I think that might be worse than tge long drawn battle, where more time is available.
I have no first hand experience, so this is speculation. It was just shocking to hear.
8 days ago he posted a random comment about housing in Austin. So mundane.
Life and death are strange. I'm embarrassed to know that if I had 1 month to live, I'd probably still spend a couple of hours a day watching random youtube videos and commenting on meaningless HN and reddit threads.
Maybe they aren't so meaningless. Congregating in public forums to exchange ideas is something humans have done for millennia. I should hope that, amid the noise, we find value in the conversations here and leave a bit more enlightened or entertained.
It's very strange - some people are lucid and mobile up until nearly the end, and others are 'out of it' for a long time. My mother was mostly delirious and bedridden for the entire last month of her life before dying from cancer.
I suppose if the person is able to find peace with what's happening, then maybe it's better to be lucid, but for others, maybe being 'out of it' is a blessing.
The work he did with clinical trials and navigating the system was very impressive. We need more people that are willing to push the envelope on cancer trials. I have my own challenges and his work is greatly appreciated.
We still need to beat cancer, all types. Let's keep going where Jake left off.
I agree with you in spirit but would suggest that pushing for more funding of schools, universities, basic research, and applied research is something that we should all be doing.
Imagine if all the smart people tried to cure cancer instead of working in Wall Street and Adtech
Yes, the general spirit is good but the clinical trial stage is the very end of a long process. The clinical trial the most visible part of getting a new cancer treatment to patients, but the bulk of delay in developing a new treatment is waiting for the basic science. More aggressive clinical trials could save ~ years. More aggressive education and fundamental research could save ~ decades. Can't run a trial on a treatment that doesn't exist yet.
Think about how difficult it is to make a significant contribution in your particular field of expertise that is not about to be done right now anyway because the time is right. Very difficult indeed.
It is the same with cancer research. Not saying the world can‘t be better, but science cannot be done faster, probably.
> Think about how difficult it is to make a significant contribution in your particular field of expertise that is not about to be done right now anyway because the time is right. Very difficult indeed.
The absolute opposite of my experience. Every one of the fields I've gained expertise in over the years indicates to me that more human effort would pay not just dividends but increasing returns. Particularly so with research. The biggest thing I learn when I gain expertise is just exactly how much we don't know.
> Think about how difficult it is to make a significant contribution in your particular field of expertise that is not about to be done right now anyway because the time is right.
I independently reinvented my entire field of research by accident, because I didn't know it existed; and I'm pretty sure I did a better job. There are a few puzzle pieces and key insights it probably would've taken me a few years (or decades) to discover, without which I couldn't demonstrate (or, if I'm being honest, know) the immense superiority of my approach, but I'm pretty sure the majority of the field is obsoleted by the ideas I've had.
Oh, look at me, I'm so clever… right? Good guess, but actually no. When I ask the right questions to my peers (outside the field), they usually propose a similar approach. (The main differences can be attributed to the fact I've thought about this for years, and they've thought about it for minutes: a few of the obvious things don't work, but then things get elegant when you replace them with ones that do.)
That must mean the time's right, then? I did suspect it was this… until I found a few dozen publications by a widely-respected expert, from half a century ago, talking about a (slightly underdeveloped, idiosyncratic) version of the approach like it was common sense, remarking that people were a lot more receptive to this idea than they used to be, but still it was not being adopted.
A minor application of this approach to a different field would completely revolutionise it (even moreso than it does my field). I briefly fantasised about doing that, before dismissing as "something to investigate later" (i.e. "a childish fantasy I haven't found the holes in yet"). But not only does that application work, it was implemented and trialled. The results were published 26 years ago, in a paper that concludes by confusedly asking why nobody was doing this. After reading the paper (which I found completely by accident while looking for something else), I felt much the same way. (Still nobody is doing it, in case you're wondering. It's been cited six times – once in its field, two years after publication, and five times in other fields in papers where it isn't really relevant.)
In physics, parts of chemistry, and parts of mathematics, there is room for revolution. I'm not sure any of the softer fields (counting mathematics qua philosophy as soft) are particularly good at being revolutionised. (Economics is particularly bad: nearly every economist knows that economics is wrong, and yet it persists.) And it's not because new ideas are slow to be adopted: at least 10% of my field's practitioners dropped everything to try to solve its Hard Problems with LLMs. (Those I know, I talked out of this, by describing – with non-rigorous theoretical arguments – what they would find. After years of work, the best result I've seen is only slightly better than the bound I predicted.)
I'm sure there's some way to solve this problem, but I don't know it. I wouldn't be surprised if the solution has been identified, written down, published, forgotten, independently reinvented, tested, found to work, published again, ignored…
I don't say this to cast aspersions on science, or the academic system; nor to blame people or institutions for their failings. This problem is well-known. It's not a matter of people being stuck in their ways: if anything, academics are too credulous, too willing to believe that things work which don't. But I don't think adjusting the "credulity" dial, or the "speed" dial, or the "try novel approaches" dial, is a solution. Science, as it stands, cannot be done faster, because the system doesn't know how.
All I'm saying is, watch out for this. Support people who think they have a better way, check the literature for interesting things (and then confirm them, if you can). Question not whether your current approaches are good, but what they actually do – and ask whether that is really what you want to be doing, or a proxy goal that everybody's lost sight of.
And if you find yourself along with your peers, dismissing something out-of-hand without having tried it, maybe don't lend your voice to the snubbing crowd. Maybe it's bogus, maybe its proponents are wrong about its merits, but it might have merits. We can't afford not to know.
Also: Don't get so enamoured by the idea of incremental progress, of scientific legacy, that you can scarcely imagine the idea that everybody you know might have taken a wrong turn 30, or 50, or 400 years ago. Science is the study of what is _not_ true, of falsification: how _not_ to cure a patient, how _not_ to go to the moon. It says nothing about what _is_. (That's the domain of engineering.)
The discovery of germs did not prove the non-existence of prions.
The good thing about finance and ad-tech (both of which I've successfully worked in) is that if you're good your clients (if any) are happy to pay you lots. With cancer, if you succeed, you're supposed to give away what you've got since not doing so is going to kill people. If you don't, you are the Great Satan.
Since most people subscribe to the Copenhagen Interpretation of Ethics, I think I'd rather not touch the field at all. Let those who are altruistic be altruistic. If I never create a cure, I need never be considered evil for not giving it away.
To put a finer point on this, the capitalistic enterprises that many are very excited about and believe will solve problems via the invisible hand, may not not pursue basic research because you can't demonstrate potential profit in it to an investor.
But of course basic research, including all of its false starts, failures, and irrelevant discoveries, are precisely what lays the groundwork for the for-profit enterprises that come later.
That's going to be hard to do so long as we continue regarding someone who makes a billion from a new cancer drug as as a price-gouging murderer while regarding someone who makes a billion from starting an adtech company with mere indifference.
Universities have their own problem such as no one attempting to replicate each others work [1] and keep on publishing or they won’t get promoted. We should fund replication trials in universities . Also , cancer is not some kind of monolithic problem nearly every cell has some mechanism to mutate so it becomes cancer. For example new cancer techniques come from mRNA research [2] . The problem of solving cancer isn’t some monolithic problem that throwing any amount of people will solve and even if they tried they would probably get burned out which is why they work for Wall Street or Adtech in the first place. One of the people that developed the research in mRNA got her career torpedoed to work for John Hopkins University [3]
[3] In 1988, Karikó accepted a job at Johns Hopkins University without first informing her lab advisor Suhadolnik of her intention to leave Temple, as recounted in Gregory Zuckerman's 2021 book A Shot to Save the World. Suhadolnik told her that if she went to Johns Hopkins, he would have her deported, and subsequently reported her to U.S. immigration authorities, claiming that she was "illegally" in the United States. In the time it took her to successfully challenge the resulting extradition order, Johns Hopkins withdrew the job offer. Suhadolnik "continued bad-mouthing Karikó, making it impossible for her to get a new position" at other institutions, until she met a researcher at Bethesda Naval Hospital who "had his own difficult history with Suhadolnik".
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.)
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.
I actually met Jake in person, more than a decade ago, when I was doing freelance tech support and his parents needed some networking help.
Extremely driven guy, and also super interested in the why of everything I was doing and the debugging process.
Also he had the first kinesis keyboard I ever saw in person, which kind of pushed me down the build your own keyboard route, which really helped later when I was having RSI issues.
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.
Puts me in mind of Randy Pausch's last lecture [0]; only reminded of it by this, which also reminds me I've lost my mother, father in law recently plus close one going through it right now. Horrible disease, hard to find the words sometimes (edit: which he did).
Jake was strong. He was so prolific throughout his death process. Truly an inspration, especially to those dying of this disease.
It is a terrible disease. I would not wish it on my worst enemy. The horror, pain and lethargy that you experience... Having chunks of your body cut out periodically... Slowly dying from the inside out... Watching your loved ones fall apart... I can barely put into words how difficult it is. If you know someone who has this disease, reach out to them, they need love and support.
Rest in peace Jake. You will be missed. But more importantly, you will be remembered.
And yet… an invaluable opportunity to say goodbye and "get affairs in order". The suffering for all affected, I completely agree, I would not want anyone to go through. But compared to a recent bereavement I experienced where this person just did not come home, having died suddenly, unexpectedly, tragically alone and unseen. Would that I could choose, I think I would like the notice, despite the downsides.
Love to all dealing with grief.
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.
I'm sort of afraid to ask since everyone seems to know, but... what is he known for? Usually black bar means a tech giant has died, but absent a wiki page I'm having a hard time finding anything on google about him except the news of his death...
Jake joined HN in 2008, and has (had?) 80000 karma and change.
He was one of us. I'm sure if you refresh this thread a few times you'll learn more about him, as it happens I hadn't heard of the man until the thread about him entering hospice, so I'm looking forward to that.
But the first part of this post is enough for a black bar imho. It means that a lot of the community will recognize and know who he is, and miss him now that he's gone. That's enough.
You and the GGP author joined in 2018, so maybe you haven't noticed yet, but the black bar has always very much been an "at the whims of the site operator" thing. If you try to apply any other metric (like "tech giant"), you'll be scratching your head at who gets one and who gets left out. (I don't think you're missing anything, the only thing I know about this person is that according to my browser history I visited his July 2023 post, but I had no recollection of that as to me it was just another in the long line of sad posts about cancer and terrible government barriers in attempts to treat it.)
> You and the GGP author joined in 2018, so maybe you haven't noticed yet, but the black bar has always very much been an "at the whims of the site operator" thing.
I'm not questioning that at all. I'm just trying to understand who this person was and why they're getting this attention.
I had the same question and it mostly looks like rationalist/libertarian space posting like you saw a lot of on the internet in the 2000s in particular. His wife seems to be active in similar areas (went on a far right think tank podcast run by one of the 2010s alt-right crowd guys last month to talk about deregulating the FDA) so I'd imagine if you are of that bent, they're known pretty well.
Been following along with this for a while. Jake seemed like a genuinely good guy. I find it very heartwarming that yesterday his very last HN comment was to post an archive link (which are always the most heroic people on this forum):
I remember exchanging some comments with him here a few months back. My mother passed from gastric cancer back in December, so this hits very close to home even if I never personally knew him.
Death eventually comes for us all, but the sheer pain and agony of witnessing someone pass from cancer is particularly unbearable.
I don’t know Jake, but I’ve been reading his last writings and I’ll observe that strength and courage and class in the face of existential infinity never, ever goes out of style.
That’s a legacy. You’re a role model to me for how I hope to face my moment when it comes.
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!
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.
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.
@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.
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 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.
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.
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.
> 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.
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.
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.
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.
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.
> 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.
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.
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.
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.
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 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.
Reading your comments, I am increasingly convinced you might have accidentally registered on the wrong website. Possibly the wrong internet. Go read the rules.
I've lost the love of my life, as well as my thinking and writing partner, and everything is strange and disorienting right now. It's a comfort when nothing feels comfortable to know how appreciated he was and still is. As soon as I'm able, and for anyone who is interested in joining the efforts, I promised him I'd continue the push for FDA reform, and to try to find ways to improve agency for cancer patients so that other people in his position might suffer less than he did. I've never known a braver person. I'll miss him forever, but won't stop trying to keep his legacy alive.
Please feel free to reach out anytime (I'm at drbstillman@gmail.com). Thank you also for all the well wishes for myself and Athena, who I hope will be just like her Dad.