6 ms·

So the treatment worked, and she appears to be recovered from what might otherwise have been treatment-resistant, fatal cancer. But she was only able to do so

So the treatment worked, and she appears to be recovered from what might otherwise have been treatment-resistant, fatal cancer. But she was only able to do so because of having the skill and access needed to self-administer the cure. How many people die every year because we don't dare risk any deaths from uncertain treatments like these? Sure, they aren't ever going to be perfect, but- what's the net?

admissionsguy 2y ago
For this reason I have mixed feelings concerning Richard Scolyer’s glioblastoma treatment. On one hand it’s great that he has possibly found something that works and will in time become the new standard of care. At the same time it is disturbing that thousands of patients who are not renowned scientists have to die without a chance to try the same treatment.
- teyc 2y ago
  You make a good point. Could there be a case for new ethical considerations to be made. The issue is patients are very vulnerable and no one really knows how bad the downside may be. A prolonged agonising or disabling death can be far worse.
- melling 2y ago
  It is disturbing. For some reason it’s not disturbing enough that we spend more to try and cure these diseases. The Last Lecture was given almost 20 years ago. Pancreatic cancer is just as deadly today. https://youtu.be/ji5_MqicxSo?si=bn6VBPaWraUfO-zC https://youtu.be/ji5_MqicxSo?si=bn6VBPaWraUfO-zC
daveguy 2y ago
There is a lot of leeway (in the US) for treatment of terminal diseases with the Right to Try Act: https://www.fda.gov/patients/learn-about-expanded-access-and-other-treatment-options/right-try https://www.fda.gov/patients/learn-about-expanded-access-and...
- o11c 2y ago
  And unfortunately, that leads to a lot of wasted money. It's practically a scam, preying on the helpless.
  - Laaas 2y ago
    It’s a scam to be able to try experimental treatments for your otherwise fatal disease?
    - deleted 2y ago
      [deleted]
    - AnthonyMouse 2y ago
      There's a fairly obvious trade off here. Experimental treatments are often crap. But occasionally they're the thing that will be the standard in ten years, and only isn't now because it hasn't been thoroughly studied. Except that if you don't get it now you'll be dead in ten years. This is the heart of the difference between freedom and paternalism. If people can choose for themselves then 90% of the time it's going to be ineffective, if not an outright scam. But if people can't choose for themselves then 100% of the time they die. The paternalists say it should be the latter, because scams are bad.
      - smogcutter 2y ago
        > But if people can't choose for themselves then 100% of the time they die. This is only true for a certain set of cases, and in those cases people generally can choose for themselves.
        AnthonyMouse 2y ago
        That's what right to try is. There are people who believe that should not be the case. But the same logic also works for anything non-fatal as long as the proposed treatment is also non-fatal. If you want to try something and it probably won't work but it also probably won't cause permanent damage, there is nobody who should stop you from finding out what happens for yourself.
arcticbull 2y ago
The counter-argument is "how many more would die if we just let desperate people yolo on themselves." Which brings us back to the current compromise solutions.
- BriggyDwiggs42 2y ago
  We probably should let them if they’ve exhausted other options right?
  - melling 2y ago
    Let them what? Enroll in a clinical trial? Buy drugs from some website? Get a PhD to try and cure their own disease? https://www.wired.com/story/sleep-no-more-crusade-genetic-killer/ https://www.wired.com/story/sleep-no-more-crusade-genetic-ki...
    - wslh 2y ago
      I believe the main point is to allow the patient to choose from a set of treatments. Correct me if I’m wrong, but isn’t this already happening at some level, where patients receive treatments that are in advanced stages of drug trials? I imagine there could be other options available, and many times the issues are related to logistics, bureaucracy, and corruption. For instance, many people around the world go hungry due to logistical challenges (e.g., political interference) [1]. It seems we accept the status quo, while some companies are sending cheaper spacecraft into space. [1] https://www.reddit.com/r/NoStupidQuestions/comments/zye4gm/why_hasnt_world_hunger_been_resolved_if_it_is_a/ https://www.reddit.com/r/NoStupidQuestions/comments/zye4gm/w...
      - melling 2y ago
        People can enroll in clinical trials. https://clinicaltrials.gov/ https://clinicaltrials.gov/
        wslh 2y ago
melling 2y ago
I think I’ve been hearing this argument for the last 40 years. How many miracle cures have we missed? None If you really want to cure cancer, and other diseases like ALS, etc, invest the money and resources necessary to do it.
- learn_more 2y ago
  How many died waiting for approval of cures we did find?
  - melling 2y ago
    How many have died because we didn’t care enough to try harder to cure these terrible diseases. Tens of millions! If you have a disease and want to find clinical trials for unapproved drugs, they are available. https://clinicaltrials.gov/ https://clinicaltrials.gov/ https://clinicaltrials.gov/study/NCT05855200?locStr=New%20York,%20NY&country=United%20States&state=New%20York&city=New%20York&cond=Colon%20Cancer&rank=1 https://clinicaltrials.gov/study/NCT05855200?locStr=New%20Yo...
  - thinkingtoilet 2y ago
    Far less than if we didn't have a proper system in place. We literally have miracle cures for things like measles, polio, and small pox yet people are far too stupid to take them. You think just letting people try whatever they want on people in a desperate situation is going to lead to good things?
bsder 2y ago
> How many people die every year because we don't dare risk any deaths from uncertain treatments like these? Sure, they aren't ever going to be perfect, but- what's the net? The trials exist. Getting patients enrolled in the trials is the biggest problem. Navigating the bureaucracy is a huge problem ("Please be dying, but not too quickly, part 1: a clinical trial story" see: https://bessstillman.substack.com/p/please-be-dying-but-not-too-quickly https://bessstillman.substack.com/p/please-be-dying-but-not-...). Even worse--we know the net to this stuff. It's negative and large. We just went through this. Desperate people are stupid. Look at all the snake oil about Covid cures before the vaccines and how much damage that snake oil did. And it's worse than that. It encourages ethical problems among the doctors themselves. You're sure your treatment will work it just needs a couple more patients. What will you do to get those patients? Finally, if you throw the system open, the people playing by the rules will get drowned by those not. Bad money drives out good and all that. The system as we have it certainly isn't ideal, but throwing things open would be much, much worse.
- Earw0rm 2y ago
  Very much this.
CipherThrowaway 2y ago
What doesn't make its way into case studies and HN headlines is all the stories of people who did get access to uncertain treatments and died anyway. Sometimes faster than they would have without the experimental treatment at all. This isn't a case study about a breast cancer cure. This is a story about a single individual's cancer's response to an experimental treatment. For comparison, there are case studies of spontaneous remission in refractory cancers triggered by seasonal flu. Virologists aren't sitting around waiting to develop cancer before they decide to roll out the miracle cancer cures. Oncolytic viruses have been researched, studied and tested on cancer patients for almost a century now.
- roenxi 2y ago
  > Virologists aren't sitting around waiting to develop cancer before they decide to roll out the miracle cancer cures. You say that, but the article suggests otherwise. This virologist did believe that her colleagues were sitting around not rolling out something that would cure her. It is pretty easy to see how a lot of cures would be stuck in the research world, unable to get to patients; there is no reason to believe they are moving quickly to bring cures to market. You can see people arguing up and down the thread how they have higher priorities than testing stuff to see if it might work.
  - CipherThrowaway 2y ago
    > This virologist did believe that her colleagues were sitting around not rolling out something that would cure her. And because her outcome was so unexpected and unusual it got published as a case study. What you don't see are all the cases where the experimental miracle cure treatment did not work. What you also won't see in headlines are all the trials where putative miracle cures and other promising treatments failed to demonstrate survival benefits in larger cohorts than 1. One of the counterintuitive things about cancer is how badly individual cases and responses to treatment generalize to the broader patient population. If you didn't know any better, you could easily read a story like this and think "wow, this breast cancer cure was just stuck in a lab somewhere!" But to put a story like this into context, you need to understand just how many individual miracle remission stories there are, and how varied individual cancers and responses to treatment are. There are potential miracle cures almost everywhere, and a large number of them are being aggressively researched, tested on cancer patients at any given time - often as part of combination therapies. Some of these promising technologies do become breakthrough cancer treatments that create durable remissions, such as checkpoint inhibitors. The rest fizzle out.
Retric 2y ago
Experiments regularly take significant risks with peoples lives in the US, it’s far from 0. The barriers are surprisingly low, but come from a history of terrible experiments on the uninformed. People blame the FDA, but lawsuits are also considered a significant risk. This rather famously killed ~100 men in the US and ended in 1972 long after effective treatments where available. https://en.wikipedia.org/wiki/Tuskegee_Syphilis_Study https://en.wikipedia.org/wiki/Tuskegee_Syphilis_Study But ethical violations are common, here’s one example where a whistleblower raised concerns in 2016 but it continued until Nov 2018 when funding ran out: https://www.kpbs.org/news/health/2021/02/12/new-details-unethical-liver-study-san-diego-va https://www.kpbs.org/news/health/2021/02/12/new-details-unet...

admissionsguy 2y ago

For this reason I have mixed feelings concerning Richard Scolyer’s glioblastoma treatment. On one hand it’s great that he has possibly found something that works and will in time become the new standard of care. At the same time it is disturbing that thousands of patients who are not renowned scientists have to die without a chance to try the same treatment.

teyc 2y ago
You make a good point. Could there be a case for new ethical considerations to be made. The issue is patients are very vulnerable and no one really knows how bad the downside may be. A prolonged agonising or disabling death can be far worse.
melling 2y ago
It is disturbing. For some reason it’s not disturbing enough that we spend more to try and cure these diseases. The Last Lecture was given almost 20 years ago. Pancreatic cancer is just as deadly today. https://youtu.be/ji5_MqicxSo?si=bn6VBPaWraUfO-zC https://youtu.be/ji5_MqicxSo?si=bn6VBPaWraUfO-zC

daveguy 2y ago

There is a lot of leeway (in the US) for treatment of terminal diseases with the Right to Try Act: https://www.fda.gov/patients/learn-about-expanded-access-and-other-treatment-options/right-try https://www.fda.gov/patients/learn-about-expanded-access-and...

o11c 2y ago
And unfortunately, that leads to a lot of wasted money. It's practically a scam, preying on the helpless.
- Laaas 2y ago
  It’s a scam to be able to try experimental treatments for your otherwise fatal disease?
  - deleted 2y ago
    [deleted]
  - AnthonyMouse 2y ago
    There's a fairly obvious trade off here. Experimental treatments are often crap. But occasionally they're the thing that will be the standard in ten years, and only isn't now because it hasn't been thoroughly studied. Except that if you don't get it now you'll be dead in ten years. This is the heart of the difference between freedom and paternalism. If people can choose for themselves then 90% of the time it's going to be ineffective, if not an outright scam. But if people can't choose for themselves then 100% of the time they die. The paternalists say it should be the latter, because scams are bad.
    - smogcutter 2y ago
      > But if people can't choose for themselves then 100% of the time they die. This is only true for a certain set of cases, and in those cases people generally can choose for themselves.
      - AnthonyMouse 2y ago
        That's what right to try is. There are people who believe that should not be the case. But the same logic also works for anything non-fatal as long as the proposed treatment is also non-fatal. If you want to try something and it probably won't work but it also probably won't cause permanent damage, there is nobody who should stop you from finding out what happens for yourself.

arcticbull 2y ago

The counter-argument is "how many more would die if we just let desperate people yolo on themselves." Which brings us back to the current compromise solutions.

BriggyDwiggs42 2y ago
We probably should let them if they’ve exhausted other options right?
- melling 2y ago
  Let them what? Enroll in a clinical trial? Buy drugs from some website? Get a PhD to try and cure their own disease? https://www.wired.com/story/sleep-no-more-crusade-genetic-killer/ https://www.wired.com/story/sleep-no-more-crusade-genetic-ki...
  - wslh 2y ago
    I believe the main point is to allow the patient to choose from a set of treatments. Correct me if I’m wrong, but isn’t this already happening at some level, where patients receive treatments that are in advanced stages of drug trials? I imagine there could be other options available, and many times the issues are related to logistics, bureaucracy, and corruption. For instance, many people around the world go hungry due to logistical challenges (e.g., political interference) [1]. It seems we accept the status quo, while some companies are sending cheaper spacecraft into space. [1] https://www.reddit.com/r/NoStupidQuestions/comments/zye4gm/why_hasnt_world_hunger_been_resolved_if_it_is_a/ https://www.reddit.com/r/NoStupidQuestions/comments/zye4gm/w...
    - melling 2y ago
      People can enroll in clinical trials. https://clinicaltrials.gov/ https://clinicaltrials.gov/
      - wslh 2y ago

melling 2y ago

I think I’ve been hearing this argument for the last 40 years. How many miracle cures have we missed? None If you really want to cure cancer, and other diseases like ALS, etc, invest the money and resources necessary to do it.

learn_more 2y ago
How many died waiting for approval of cures we did find?
- melling 2y ago
  How many have died because we didn’t care enough to try harder to cure these terrible diseases. Tens of millions! If you have a disease and want to find clinical trials for unapproved drugs, they are available. https://clinicaltrials.gov/ https://clinicaltrials.gov/ https://clinicaltrials.gov/study/NCT05855200?locStr=New%20York,%20NY&country=United%20States&state=New%20York&city=New%20York&cond=Colon%20Cancer&rank=1 https://clinicaltrials.gov/study/NCT05855200?locStr=New%20Yo...
- thinkingtoilet 2y ago
  Far less than if we didn't have a proper system in place. We literally have miracle cures for things like measles, polio, and small pox yet people are far too stupid to take them. You think just letting people try whatever they want on people in a desperate situation is going to lead to good things?

bsder 2y ago

> How many people die every year because we don't dare risk any deaths from uncertain treatments like these? Sure, they aren't ever going to be perfect, but- what's the net? The trials exist. Getting patients enrolled in the trials is the biggest problem. Navigating the bureaucracy is a huge problem ("Please be dying, but not too quickly, part 1: a clinical trial story" see: https://bessstillman.substack.com/p/please-be-dying-but-not-too-quickly https://bessstillman.substack.com/p/please-be-dying-but-not-...). Even worse--we know the net to this stuff. It's negative and large. We just went through this. Desperate people are stupid. Look at all the snake oil about Covid cures before the vaccines and how much damage that snake oil did. And it's worse than that. It encourages ethical problems among the doctors themselves. You're sure your treatment will work it just needs a couple more patients. What will you do to get those patients? Finally, if you throw the system open, the people playing by the rules will get drowned by those not. Bad money drives out good and all that. The system as we have it certainly isn't ideal, but throwing things open would be much, much worse.

Earw0rm 2y ago
Very much this.

CipherThrowaway 2y ago

What doesn't make its way into case studies and HN headlines is all the stories of people who did get access to uncertain treatments and died anyway. Sometimes faster than they would have without the experimental treatment at all. This isn't a case study about a breast cancer cure. This is a story about a single individual's cancer's response to an experimental treatment. For comparison, there are case studies of spontaneous remission in refractory cancers triggered by seasonal flu. Virologists aren't sitting around waiting to develop cancer before they decide to roll out the miracle cancer cures. Oncolytic viruses have been researched, studied and tested on cancer patients for almost a century now.

roenxi 2y ago
> Virologists aren't sitting around waiting to develop cancer before they decide to roll out the miracle cancer cures. You say that, but the article suggests otherwise. This virologist did believe that her colleagues were sitting around not rolling out something that would cure her. It is pretty easy to see how a lot of cures would be stuck in the research world, unable to get to patients; there is no reason to believe they are moving quickly to bring cures to market. You can see people arguing up and down the thread how they have higher priorities than testing stuff to see if it might work.
- CipherThrowaway 2y ago
  > This virologist did believe that her colleagues were sitting around not rolling out something that would cure her. And because her outcome was so unexpected and unusual it got published as a case study. What you don't see are all the cases where the experimental miracle cure treatment did not work. What you also won't see in headlines are all the trials where putative miracle cures and other promising treatments failed to demonstrate survival benefits in larger cohorts than 1. One of the counterintuitive things about cancer is how badly individual cases and responses to treatment generalize to the broader patient population. If you didn't know any better, you could easily read a story like this and think "wow, this breast cancer cure was just stuck in a lab somewhere!" But to put a story like this into context, you need to understand just how many individual miracle remission stories there are, and how varied individual cancers and responses to treatment are. There are potential miracle cures almost everywhere, and a large number of them are being aggressively researched, tested on cancer patients at any given time - often as part of combination therapies. Some of these promising technologies do become breakthrough cancer treatments that create durable remissions, such as checkpoint inhibitors. The rest fizzle out.

Retric 2y ago

Experiments regularly take significant risks with peoples lives in the US, it’s far from 0. The barriers are surprisingly low, but come from a history of terrible experiments on the uninformed. People blame the FDA, but lawsuits are also considered a significant risk. This rather famously killed ~100 men in the US and ended in 1972 long after effective treatments where available. https://en.wikipedia.org/wiki/Tuskegee_Syphilis_Study https://en.wikipedia.org/wiki/Tuskegee_Syphilis_Study But ethical violations are common, here’s one example where a whistleblower raised concerns in 2016 but it continued until Nov 2018 when funding ran out: https://www.kpbs.org/news/health/2021/02/12/new-details-unethical-liver-study-san-diego-va https://www.kpbs.org/news/health/2021/02/12/new-details-unet...