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Jake Seliger has died

marginalrevolution.com

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Re: Jake Seliger has died

#81

Post by bena »

Zak wrote: post #26
bena wrote: post #23

Earlier quoted context omitted.

This is a complicated subject. 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…

> 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 im…

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.

Re: Jake Seliger has died

#82

Post by zdw »

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.

He left us far too soon.

Re: Jake Seliger has died

#85

Post by llamaimperative »

Nasrudith wrote: post #48
somerandomqaguy wrote: post #30

Earlier quoted context omitted.

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.

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 wor…

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.

Re: Jake Seliger has died

#86

Post by [deleted] »

fatnoah wrote: post #20
vinnyvichy wrote: post #4

Jake's wife on FDA deregulation https://bessstillman.substack.com/p/the-drugs-killing-dying-...

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 do…

[deleted]

Re: Jake Seliger has died

#87

Post by canucker2016 »

dredmorbius wrote: post #58

Jake posted as jseliger on HN: https://news.ycombinator.com/user?id=jseliger He blogged at https://jakeseliger.com/ >, and numerous of his blog articles were submitted to HN: https://news.ycombinator.com/from?site=jakeseliger.com >. That includes numerous topics, over the past year or so his experience with cancer, often concerning frustrations with the process and mechanism. His essay on agenticness especially strik…

In an August 2023 post about regrets, https://jakeseliger.com/2023/08/12/regrets/, his last regret is:

    * 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.
In https://jakeseliger.com/2024/05/16/the-financial-costs-of-he..., he mentions

    "...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."
Followed by radiation treatments, mentioned in https://jakeseliger.com/2023/11/14/the-more-things-go-wrong-...

He posted about his followup investigation and the treatment of his tongue one year after the treatment - https://jakeseliger.com/2024/05/25/the-one-year-anniversary-...

    "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."
His first public announcement of his cancer - https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-ce...

Followed by https://jakeseliger.com/2023/07/23/how-do-we-evaluate-our-li...

From his wife's perspective: https://jakeseliger.com/2023/07/24/what-its-like-to-be-marri...

His wife had several posts about their search for an appropriate trial for his cancer and how they dealt with his cancer.

His outlook in May 2024: "The likelihood of me living to see another anniversary is low—probably under 20%—but not 0%."

Re: Jake Seliger has died

#88

Post by sgseliger »

thaumasiotes wrote: post #12
A_D_E_P_T wrote: post #2

Confirmed by his brother on his GoFundMe: https://www.gofundme.com/f/help-the-fight-against-cancer-wit... May he rest in peace.

Thanks for the link. 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.)

This is his brother. He passed away around 8:30pm on Wednesday. He was still reading, writing, hearing from loved ones up until the end.

Re: Jake Seliger has died

#90

Post by flobosg »

dudus wrote: post #46

What happens to his hacker News account? What about email account, cloud servers, etc ...? 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?

* Get Your Shit Together – https://getyourshittogether.org/

* 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)

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