3 ms·

You're welcome! I've been "reading the Internet" since the late '90s with sites like /., and, when I got diagnosed with the death sentence sentence—recurrent

You're welcome! I've been "reading the Internet" since the late '90s with sites like /., and, when I got diagnosed with the death sentence sentence—recurrent and metastatic head and neck cancer—I began looking into clinical trials, and I realized that I'd never read any good descriptions of what clinical trials are like from the patient's perspective. So my wife and I decided that the thing that we needed to exist in the world didn't exist, and thus we made it. When my wife and I started writing in earnest about the clinical-trial process in particular ("Please be dying, but not too quickly" is the most comprehensive: https://bessstillman.substack.com/p/please-be-dying-but-not-too-quickly https://bessstillman.substack.com/p/please-be-dying-but-not-...), I kept expecting someone to leave a comment or send an email saying: "Hey buddy, this has already been done, check it out here: _______." But that comment or email never came. Probably someone else's comprehensive essay and guide exists somewhere, given how big the Internet is, but I've never seen it. Without having had this kind of experience, I think it's difficult to understand just how difficult and not-user-friendly the clinical-trial process is. If we can help move the needle on that, we might dramatically reduce the number of people who are in a position like mine. Personalized cancer vaccines are so close: https://jakeseliger.com/2024/04/12/moderna-mrna-4157-v90-news-for-head-and-neck-cancer-patients-like-me https://jakeseliger.com/2024/04/12/moderna-mrna-4157-v90-new..., and I don't understand why the FDA hasn't approved Moderna's mRNA-4157 yet, apart from bureaucratic inertia and indifference to human suffering. I hope no one who has read our work has to go through a version of what I've been through, or has friends or family who must, but, statistically, given that a couple hundred thousand people have seen it, someone will. And it is better to be equipped with some sense of what to do and how to do it, than to have to try to figure it from scratch. I've wound up emailing guidance to a lot of people about head and neck cancers, and clinical trials.

delichon 2y ago
I went through terminal cancer with both parents. It's infuriating that with that diagnosis the medical cabinet is open with respect to palliative care, in quantities that make an exit simple. But at the same time they feel the need to protect you from possible treatments. Potential accelerated death? Approved. Potential prolonged life? We'll need more evidence.
- baggy_trough 2y ago
  It's especially infuriating that federal restrictions on medical treatment are unlawful to start with (there's no constitutional basis for them).
  - Brybry 2y ago
    I think the Commerce Clause is a pretty sound basis for most FDA regulation. It just gets weird with the overbroad supreme court decisions that are like: "well, stuff that only happens in a single state but that might be used for interstate commerce or somehow impact interstate commerce indirectly" is also covered. [1][2] [1] https://en.wikipedia.org/wiki/Gonzales_v._Raich https://en.wikipedia.org/wiki/Gonzales_v._Raich [2] https://en.wikipedia.org/wiki/Wickard_v._Filburn https://en.wikipedia.org/wiki/Wickard_v._Filburn
    - baggy_trough 2y ago
      One can only get from regulating interstate commerce to telling a terminal patient what medicine he may consume by a tortured logical process driven by motivated reasoning.
BurningFrog 2y ago
> I don't understand why the FDA hasn't approved Moderna's mRNA-4157 yet, apart from bureaucratic inertia and indifference to human suffering. Both very in character for what FDA does.
- baggy_trough 2y ago
  [flagged]
  - deprecative 2y ago
    I'd argue the DoT comes surprisingly close to the FDA. And let's not get started on how backwards the FDA and USDA are with their almost competing near miss regulatory areas.
    - ido 2y ago
      Department of Transport? Surely the DoD (the ones supervising actual murder) are at the top.
      - dredmorbius 2y ago
        The focus of the US military is the accomplishment of military objectives, not on indiscriminate slaughter. I'm having trouble finding current comprehensive reports on casualties as a consequence of direct US military action, but we can look at the most recent major action, the US-initiated war in Iraq (2003--2011), in which the upper-bound estimate is about 645,000 casualties. That works out to about 80,000 per year. Low-end estimate is about 50,000/year. Note that this is now much reduced. Highway traffic fatalities in the US are presently just under 50,000/year. Which is to say that peacetime fatalities due to transportation are on the order of total military deaths during a fairly major war. On a sustained basis, vehicles have likely killed more people than US military operations. Another stat: more people had died from 2000--2019 in US traffic deaths than all US military casualties from both World Wars: <https://www.washingtonpost.com/local/trafficandcommuting/more-people-died-in-car-crashes-this-century-than-in-both-world-wars/2019/07/21/0ecc0006-3f54-11e9-9361-301ffb5bd5e6_story.html https://www.washingtonpost.com/local/trafficandcommuting/mor...> Note that military casualties is not total deaths inclusive of all combatants and civilian deaths. <https://en.wikipedia.org/wiki/List_of_wars_by_death_toll#Modern_(1500_AD%E2%80%93present)_wars_with_greater_than_25,000_deaths https://en.wikipedia.org/wiki/List_of_wars_by_death_toll#Mod...> <https://en.wikipedia.org/wiki/Motor_vehicle_fatality_rate_in_U.S._by_year#/media/File:United_States_Motor_Vehicle_Deaths_per_Year.webp https://en.wikipedia.org/wiki/Motor_vehicle_fatality_rate_in...>
sam2426679 2y ago
> I hope no one who has read our work has to go through a version of what I've been through I’ve had a partial glossectomy for the same PD-L1 negative cancer and have been reading your posts since before I was metastatic recurrent. I think about you relatively often. (I might have even seen you at UCSF a ~couple months ago, but I didn’t want to awkwardly ask if you were the guy from the internet.)

delichon 2y ago

I went through terminal cancer with both parents. It's infuriating that with that diagnosis the medical cabinet is open with respect to palliative care, in quantities that make an exit simple. But at the same time they feel the need to protect you from possible treatments. Potential accelerated death? Approved. Potential prolonged life? We'll need more evidence.

baggy_trough 2y ago
It's especially infuriating that federal restrictions on medical treatment are unlawful to start with (there's no constitutional basis for them).
- Brybry 2y ago
  I think the Commerce Clause is a pretty sound basis for most FDA regulation. It just gets weird with the overbroad supreme court decisions that are like: "well, stuff that only happens in a single state but that might be used for interstate commerce or somehow impact interstate commerce indirectly" is also covered. [1][2] [1] https://en.wikipedia.org/wiki/Gonzales_v._Raich https://en.wikipedia.org/wiki/Gonzales_v._Raich [2] https://en.wikipedia.org/wiki/Wickard_v._Filburn https://en.wikipedia.org/wiki/Wickard_v._Filburn
  - baggy_trough 2y ago
    One can only get from regulating interstate commerce to telling a terminal patient what medicine he may consume by a tortured logical process driven by motivated reasoning.

BurningFrog 2y ago

> I don't understand why the FDA hasn't approved Moderna's mRNA-4157 yet, apart from bureaucratic inertia and indifference to human suffering. Both very in character for what FDA does.

baggy_trough 2y ago
[flagged]
- deprecative 2y ago
  I'd argue the DoT comes surprisingly close to the FDA. And let's not get started on how backwards the FDA and USDA are with their almost competing near miss regulatory areas.
  - ido 2y ago
    Department of Transport? Surely the DoD (the ones supervising actual murder) are at the top.
    - dredmorbius 2y ago
      The focus of the US military is the accomplishment of military objectives, not on indiscriminate slaughter. I'm having trouble finding current comprehensive reports on casualties as a consequence of direct US military action, but we can look at the most recent major action, the US-initiated war in Iraq (2003--2011), in which the upper-bound estimate is about 645,000 casualties. That works out to about 80,000 per year. Low-end estimate is about 50,000/year. Note that this is now much reduced. Highway traffic fatalities in the US are presently just under 50,000/year. Which is to say that peacetime fatalities due to transportation are on the order of total military deaths during a fairly major war. On a sustained basis, vehicles have likely killed more people than US military operations. Another stat: more people had died from 2000--2019 in US traffic deaths than all US military casualties from both World Wars: <https://www.washingtonpost.com/local/trafficandcommuting/more-people-died-in-car-crashes-this-century-than-in-both-world-wars/2019/07/21/0ecc0006-3f54-11e9-9361-301ffb5bd5e6_story.html https://www.washingtonpost.com/local/trafficandcommuting/mor...> Note that military casualties is not total deaths inclusive of all combatants and civilian deaths. <https://en.wikipedia.org/wiki/List_of_wars_by_death_toll#Modern_(1500_AD%E2%80%93present)_wars_with_greater_than_25,000_deaths https://en.wikipedia.org/wiki/List_of_wars_by_death_toll#Mod...> <https://en.wikipedia.org/wiki/Motor_vehicle_fatality_rate_in_U.S._by_year#/media/File:United_States_Motor_Vehicle_Deaths_per_Year.webp https://en.wikipedia.org/wiki/Motor_vehicle_fatality_rate_in...>

sam2426679 2y ago

> I hope no one who has read our work has to go through a version of what I've been through I’ve had a partial glossectomy for the same PD-L1 negative cancer and have been reading your posts since before I was metastatic recurrent. I think about you relatively often. (I might have even seen you at UCSF a ~couple months ago, but I didn’t want to awkwardly ask if you were the guy from the internet.)