5 ms·

It always seemed silly that people with just months to live weren't allowed to try new medications in case they were dangerous. Surely you should be able to try

by rb808 7y ago

It always seemed silly that people with just months to live weren't allowed to try new medications in case they were dangerous. Surely you should be able to try anything. One protection though is that desperate people will pay for snake oil so maybe it must be free or cheap.

Symmetry 7y ago
It's a bit like the trolley problem. Allowing someone medicine that might kill them feels like pushing someone onto the tracks but not allowing it feels like inaction even if in the course of events someone will die. Also, the agency that is supposed to prevent medicine from killing people understandably gets blamed if medicine kills people. But they aren't doctors so it isn't them that gets blamed if lack of medicine kills someone.
- thaumasiotes 7y ago
  > It's a bit like the trolley problem. Allowing someone medicine that might kill them feels like pushing someone onto the tracks Huh? Surely allowing someone to take medicine that might kill them feels like letting someone jump onto the tracks. The analogue of pushing someone onto the tracks would be forcing them to take the medicine.
  - Symmetry 7y ago
    That's how I would think of it but if you work in a department under a legal framework where drugs are illegal by default and you have to do certain paperwork to make them legal it will tend to feel very different.
NikolaeVarius 7y ago
The problem is that people frame this issue as might help or might not help. The real issue is it might help, it might not help, it might hurt you in various unknown and interesting ways. Nobody wants to be responsible for that 3rd option.
em-bee 7y ago
indeed, spending lots of money on ineffective treatments is a serious risk. perhaps a good model would be to pay only if the treatment actually works. this could easily be applied to any kind of treatment that promises an improvement, including chinese medicine. with proper enforcement, snake oil would soon disappear from the market, and any experimental treatment could continue, even if it gets more expensive because the successes have to cover the costs of the failures. but i expect that someone who survives thanks to that treatment will gladly pay.
hhas01 7y ago
That is pathological nonsense. FDA already provides its Expanded Access (a.k.a. “compassionate use”) program for exactly this purpose. You know what’s worse than dying of cancer? Dying sooner, poorer, painfully, and with negative quality of care. Families robbed of precious time with their loved one, left destitute, and even more miserable and guilty for knowing they were all had. And you know what’s even worse than that? Knowing your kids, and your grandkids, and your great-grandkids will still be dying of those diseases. Because you, in your desire for pleasing lies over difficult truths, destroyed all the checks and balances and quality controls, leaving future generations not with better treatments but with the 19th-century snakeoil that was happily peddled as the cure to every ill until the development of modern medicine called those dirtbags out: Evidence or GTFO. The hard truth is everyone dies, and not always of ripe old age. The ugly truth is that gloryhound nerds with underdeveloped responsibility and “I’ve got mine fuck you” libertarian sharks want all the money and glory with none of the legwork or accountability, nor any duty to their victims when it all goes wrong. https://sciencebasedmedicine.org/right-to-try-laws-create-tremendous-legal-uncertainties-fda-expanded-access-preferable/ https://sciencebasedmedicine.org/right-to-try-laws-create-tr... You do not play with people’s lives like that, not unless you’re a malignant narcissist or stone-cold psychopath. Or if you are, go drink bleach. There are plenty of deluded loons and scamming quacks only too happy to sell you that shit as The Cure To Cancer That Doctors Don’t Want You To Know About. So it goes. -- TL;DR: The reason we have trials is not to save the people who are sick today, but all of their children who get sick tomorrow. Get your priorities straight.
- dang 7y ago
  Please don't cross into personal attacks and name-calling on HN. I'm sure you can make your substantive points about treatment quality without stooping to that, even though the issue can touch some strong feelings. Would you mind reviewing the site guidelines and not posting in the flamewar style to HN? We're trying for something quite different than that here: https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html.
  - hhas01 7y ago
    I’m sorry, it’s hard to remain polite when posters talk of playing with others’ lives like they’re the latest Apple geegaw. Especially nerds, who—let’s admit it—are amongst the world’s worst at owning their own screwups. Honestly, if some fiery language is the worst those muppets have to deal with, they don’t know how lucky they are. Modern medicine and pseudo-medicine already carry long trails of corpses behind them, but at least real medicine has learned by its mistakes and made self-corrections. What it doesn’t need is a bunch holy-rolling technocrats piling up corpses in front of them as well, just because they think they’re too clever and special to respect those hard-won rules that were earned in blood. You want to improve it, you do by building on top of those shoulders, not by throwing caution and lives to hell. .. Here’s that FDA link that I forgot to include in my previous post. https://www.fda.gov/news-events/public-health-focus/expanded-access https://www.fda.gov/news-events/public-health-focus/expanded... And here’s some reminders y’all aren’t special, are as gullible and fallible as the rest of us, and the harms you can easily unleash extend way beyond yourselves: https://arstechnica.com/science/2017/08/bucking-fda-peter-thiel-funds-patently-unethical-herpes-vaccine-trial/ https://arstechnica.com/science/2017/08/bucking-fda-peter-th... https://www.theatlantic.com/politics/archive/2016/06/tuskegee-study-medical-distrust-research/487439/ https://www.theatlantic.com/politics/archive/2016/06/tuskege... https://www.quackwatch.org/01QuackeryRelatedTopics/Cancer/laetrile.html https://www.quackwatch.org/01QuackeryRelatedTopics/Cancer/la... The Science Based Medicine site I linked elsewhere has lots more.

by rb808 7y ago

Symmetry 7y ago

It's a bit like the trolley problem. Allowing someone medicine that might kill them feels like pushing someone onto the tracks but not allowing it feels like inaction even if in the course of events someone will die. Also, the agency that is supposed to prevent medicine from killing people understandably gets blamed if medicine kills people. But they aren't doctors so it isn't them that gets blamed if lack of medicine kills someone.

thaumasiotes 7y ago
> It's a bit like the trolley problem. Allowing someone medicine that might kill them feels like pushing someone onto the tracks Huh? Surely allowing someone to take medicine that might kill them feels like letting someone jump onto the tracks. The analogue of pushing someone onto the tracks would be forcing them to take the medicine.
- Symmetry 7y ago
  That's how I would think of it but if you work in a department under a legal framework where drugs are illegal by default and you have to do certain paperwork to make them legal it will tend to feel very different.

NikolaeVarius 7y ago

The problem is that people frame this issue as might help or might not help. The real issue is it might help, it might not help, it might hurt you in various unknown and interesting ways. Nobody wants to be responsible for that 3rd option.

em-bee 7y ago

indeed, spending lots of money on ineffective treatments is a serious risk. perhaps a good model would be to pay only if the treatment actually works. this could easily be applied to any kind of treatment that promises an improvement, including chinese medicine. with proper enforcement, snake oil would soon disappear from the market, and any experimental treatment could continue, even if it gets more expensive because the successes have to cover the costs of the failures. but i expect that someone who survives thanks to that treatment will gladly pay.

hhas01 7y ago

That is pathological nonsense. FDA already provides its Expanded Access (a.k.a. “compassionate use”) program for exactly this purpose. You know what’s worse than dying of cancer? Dying sooner, poorer, painfully, and with negative quality of care. Families robbed of precious time with their loved one, left destitute, and even more miserable and guilty for knowing they were all had. And you know what’s even worse than that? Knowing your kids, and your grandkids, and your great-grandkids will still be dying of those diseases. Because you, in your desire for pleasing lies over difficult truths, destroyed all the checks and balances and quality controls, leaving future generations not with better treatments but with the 19th-century snakeoil that was happily peddled as the cure to every ill until the development of modern medicine called those dirtbags out: Evidence or GTFO. The hard truth is everyone dies, and not always of ripe old age. The ugly truth is that gloryhound nerds with underdeveloped responsibility and “I’ve got mine fuck you” libertarian sharks want all the money and glory with none of the legwork or accountability, nor any duty to their victims when it all goes wrong. https://sciencebasedmedicine.org/right-to-try-laws-create-tremendous-legal-uncertainties-fda-expanded-access-preferable/ https://sciencebasedmedicine.org/right-to-try-laws-create-tr... You do not play with people’s lives like that, not unless you’re a malignant narcissist or stone-cold psychopath. Or if you are, go drink bleach. There are plenty of deluded loons and scamming quacks only too happy to sell you that shit as The Cure To Cancer That Doctors Don’t Want You To Know About. So it goes. -- TL;DR: The reason we have trials is not to save the people who are sick today, but all of their children who get sick tomorrow. Get your priorities straight.

dang 7y ago
Please don't cross into personal attacks and name-calling on HN. I'm sure you can make your substantive points about treatment quality without stooping to that, even though the issue can touch some strong feelings. Would you mind reviewing the site guidelines and not posting in the flamewar style to HN? We're trying for something quite different than that here: https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html.
- hhas01 7y ago
  I’m sorry, it’s hard to remain polite when posters talk of playing with others’ lives like they’re the latest Apple geegaw. Especially nerds, who—let’s admit it—are amongst the world’s worst at owning their own screwups. Honestly, if some fiery language is the worst those muppets have to deal with, they don’t know how lucky they are. Modern medicine and pseudo-medicine already carry long trails of corpses behind them, but at least real medicine has learned by its mistakes and made self-corrections. What it doesn’t need is a bunch holy-rolling technocrats piling up corpses in front of them as well, just because they think they’re too clever and special to respect those hard-won rules that were earned in blood. You want to improve it, you do by building on top of those shoulders, not by throwing caution and lives to hell. .. Here’s that FDA link that I forgot to include in my previous post. https://www.fda.gov/news-events/public-health-focus/expanded-access https://www.fda.gov/news-events/public-health-focus/expanded... And here’s some reminders y’all aren’t special, are as gullible and fallible as the rest of us, and the harms you can easily unleash extend way beyond yourselves: https://arstechnica.com/science/2017/08/bucking-fda-peter-thiel-funds-patently-unethical-herpes-vaccine-trial/ https://arstechnica.com/science/2017/08/bucking-fda-peter-th... https://www.theatlantic.com/politics/archive/2016/06/tuskegee-study-medical-distrust-research/487439/ https://www.theatlantic.com/politics/archive/2016/06/tuskege... https://www.quackwatch.org/01QuackeryRelatedTopics/Cancer/laetrile.html https://www.quackwatch.org/01QuackeryRelatedTopics/Cancer/la... The Science Based Medicine site I linked elsewhere has lots more.