6 ms·

The idea that bureaucrats and scientists should be able to decide what experiments a terminally ill patient should be allowed to participate in is a deeply evil

The idea that bureaucrats and scientists should be able to decide what experiments a terminally ill patient should be allowed to participate in is a deeply evil one.

beat 8y ago
The idea that lay people should decide instead is a deeply incompetent one.
- syshum 8y ago
  So you reject the idea of Informed Consent? Hell why stop at right to try let simply take away all medical choices for everyone, If the doctor says something you will be compelled to do it, Second Opinion, no way, clearly the doctor is the professional and you as a individual are too stupid to make your own choices for your life
  - smt88 8y ago
    How is informed consent possible when the information required is a deep understanding of both medicine and statistics?
    - syshum 8y ago
      Wow... I really thought I would die before humanity would embrace a dystopian technocracy where all Self Agency is removed completely from the individual...
      - smt88 8y ago
        That's a very extreme reading of my implication that laypeople aren't able to just take a crash course in a particular disease or drug and make a well-informed decision. Do you disagree with all individual restrictions? Should we eliminate the concept of prescription drugs, so that anyone can go buy Adderall or Accutane without a doctor's approval?
        syshum 8y ago
        >>Do you disagree with all individual restrictions? Should we eliminate the concept of prescription drugs, so that anyone can go buy Adderall or Accutane without a doctor's approval? Yes, and Yes. I believe all drugs should be legal, and OTC. I own my own body and what I choose to consume is none of anyone business but my own. The idea that you should have any say at all as to what chemicals I consume is absurd to me. Do you support say making it illegal for a person to buy their own brakes for their car? Instead forcing people only to have their cars repaired by government certified mechanics? It seems odd to me that we allow anyone to work on a car, something that could actually endanger others, yet we severally restrict what people can do to themselves I am 100% for complete and total individual freedom provided that freedom is not directly harming OTHER PEOPLE, I am opposed to any restrictions upon my individual liberty which includes my liberty to harm myself up to and including suicide
  - beat 8y ago
    You COULD have argued against my point without reducto absurdum. But you didn't.
eesmith 8y ago
"Deeply evil"? Is this based on ideological considerations which reject any sort of government oversight? We have experience of what sort of quack "medicine" appears when unscrupulous people take advantage of the hopes of the terminally ill for personal gain. Is that what you want us to return to? Or do you have a way to prevent it?
- mark_edward 8y ago
  Don't worry, the free market will take care of it by killing patients who choose unwisely.
- masterleep 8y ago
  If I am dying, what right have you to tell me what experimental treatment I can take or not, if I otherwise have no hope to live? You would condemn me to no hope at all in order to save me from what you consider to be unproven or possible quackery.
  - eesmith 8y ago
    We are all dying. We are all condemned. So if you're going to use such emotional words, at least ground it in real-world examples. Here's a real-world example - https://www.livescience.com/4040-dying-desperate-lure-quack-medical-clinics.html https://www.livescience.com/4040-dying-desperate-lure-quack-... . People in the US in the last months of their lives, in desperation, go to Mexico for "treatment" by methods which have never ever worked. > One hospital we visited offered homeopathic treatments. (Homeopathy is a form of quack medicine essentially based on the mystical principle of "like cures like.") > Another, respectable-looking hospital offered such "alternative" treatments for cancer as shark cartilage, mega-doses of vitamins, and "prayer therapy." The hospital also offered Laetrile, a notorious cancer treatment discredited by repeated scientific studies. > ... Donsbach's clinic had a reputation for providing questionable medical procedures, including "ultraviolet blood purification," colonics (a potentially dangerous colon-irrigation therapy), and the use of microwaves to "heat" cancer cells. This is what you want, everywhere, yes?
    - 8y ago
olliej 8y ago
The evil "bureaucrats and scientists" are there to force the vulnerable people to not use wholesome providers of supplements that will fix their body's Ph so that it can get more alkaline. These evil practices all work to stop people having access to things as basic as Elixir sulfanilamide[1], Thalidomide[2]. If only there were already some example of the FDA allowing victims of terminal diseases to have access to drugs that might save their lives if there was overwhelming evidence that they would at the very least work? Like imagine if a drug demonstrated an immediate overwhelming success in treatment but had not yet had sufficient trials to determine side effects and safety? HIV victims could certainly have benefited from AZT before the full side effect profiles were known. It's so sad that they didn't get access to it. Oh wait, they did [3]. [1] https://en.wikipedia.org/wiki/Elixir_sulfanilamide https://en.wikipedia.org/wiki/Elixir_sulfanilamide - "We have been supplying a legitimate professional demand and not once could have foreseen the unlooked-for results. I do not feel that there was any responsibility on our part." [2] https://en.wikipedia.org/wiki/Thalidomide#Adverse_effects https://en.wikipedia.org/wiki/Thalidomide#Adverse_effects - It did work for morning sickness, but an evil scientist at the FDA had stopped it from being sold in the US, depriving expectant mothers of helpful relief [3] https://en.wikipedia.org/wiki/Zidovudine https://en.wikipedia.org/wiki/Zidovudine - HIV and AZT actually did result in the laws allowing exemptions for terminal cases. The difference between those, and "right to try" nonsense is that the terminal disease exemptions still require a degree of solid evidence of function, and a demonstration of safety vs alternatives.
aaavl2821 8y ago
The alternative to high quality scientific data determining what drugs patients choose is corporate marketing efforts determining what drugs patients get. The FDA restricts "snake oil" sales by requiring products be marketed based on good data. Remove that requirement and patients will be bombarded by marketers and salespeople peddling exaggerated claims to get at the potentially lucrative right to sell a drug

The idea that bureaucrats and scientists should be able to decide what experiments a terminally ill patient should be allowed to participate in is a deeply evil one.

beat 8y ago

The idea that lay people should decide instead is a deeply incompetent one.

syshum 8y ago
So you reject the idea of Informed Consent? Hell why stop at right to try let simply take away all medical choices for everyone, If the doctor says something you will be compelled to do it, Second Opinion, no way, clearly the doctor is the professional and you as a individual are too stupid to make your own choices for your life
- smt88 8y ago
  How is informed consent possible when the information required is a deep understanding of both medicine and statistics?
  - syshum 8y ago
    Wow... I really thought I would die before humanity would embrace a dystopian technocracy where all Self Agency is removed completely from the individual...
    - smt88 8y ago
      That's a very extreme reading of my implication that laypeople aren't able to just take a crash course in a particular disease or drug and make a well-informed decision. Do you disagree with all individual restrictions? Should we eliminate the concept of prescription drugs, so that anyone can go buy Adderall or Accutane without a doctor's approval?
      - syshum 8y ago
        >>Do you disagree with all individual restrictions? Should we eliminate the concept of prescription drugs, so that anyone can go buy Adderall or Accutane without a doctor's approval? Yes, and Yes. I believe all drugs should be legal, and OTC. I own my own body and what I choose to consume is none of anyone business but my own. The idea that you should have any say at all as to what chemicals I consume is absurd to me. Do you support say making it illegal for a person to buy their own brakes for their car? Instead forcing people only to have their cars repaired by government certified mechanics? It seems odd to me that we allow anyone to work on a car, something that could actually endanger others, yet we severally restrict what people can do to themselves I am 100% for complete and total individual freedom provided that freedom is not directly harming OTHER PEOPLE, I am opposed to any restrictions upon my individual liberty which includes my liberty to harm myself up to and including suicide
- beat 8y ago
  You COULD have argued against my point without reducto absurdum. But you didn't.

eesmith 8y ago

"Deeply evil"? Is this based on ideological considerations which reject any sort of government oversight? We have experience of what sort of quack "medicine" appears when unscrupulous people take advantage of the hopes of the terminally ill for personal gain. Is that what you want us to return to? Or do you have a way to prevent it?

mark_edward 8y ago
Don't worry, the free market will take care of it by killing patients who choose unwisely.
masterleep 8y ago
If I am dying, what right have you to tell me what experimental treatment I can take or not, if I otherwise have no hope to live? You would condemn me to no hope at all in order to save me from what you consider to be unproven or possible quackery.
- eesmith 8y ago
  We are all dying. We are all condemned. So if you're going to use such emotional words, at least ground it in real-world examples. Here's a real-world example - https://www.livescience.com/4040-dying-desperate-lure-quack-medical-clinics.html https://www.livescience.com/4040-dying-desperate-lure-quack-... . People in the US in the last months of their lives, in desperation, go to Mexico for "treatment" by methods which have never ever worked. > One hospital we visited offered homeopathic treatments. (Homeopathy is a form of quack medicine essentially based on the mystical principle of "like cures like.") > Another, respectable-looking hospital offered such "alternative" treatments for cancer as shark cartilage, mega-doses of vitamins, and "prayer therapy." The hospital also offered Laetrile, a notorious cancer treatment discredited by repeated scientific studies. > ... Donsbach's clinic had a reputation for providing questionable medical procedures, including "ultraviolet blood purification," colonics (a potentially dangerous colon-irrigation therapy), and the use of microwaves to "heat" cancer cells. This is what you want, everywhere, yes?
  - 8y ago

olliej 8y ago

The evil "bureaucrats and scientists" are there to force the vulnerable people to not use wholesome providers of supplements that will fix their body's Ph so that it can get more alkaline. These evil practices all work to stop people having access to things as basic as Elixir sulfanilamide[1], Thalidomide[2]. If only there were already some example of the FDA allowing victims of terminal diseases to have access to drugs that might save their lives if there was overwhelming evidence that they would at the very least work? Like imagine if a drug demonstrated an immediate overwhelming success in treatment but had not yet had sufficient trials to determine side effects and safety? HIV victims could certainly have benefited from AZT before the full side effect profiles were known. It's so sad that they didn't get access to it. Oh wait, they did [3]. [1] https://en.wikipedia.org/wiki/Elixir_sulfanilamide https://en.wikipedia.org/wiki/Elixir_sulfanilamide - "We have been supplying a legitimate professional demand and not once could have foreseen the unlooked-for results. I do not feel that there was any responsibility on our part." [2] https://en.wikipedia.org/wiki/Thalidomide#Adverse_effects https://en.wikipedia.org/wiki/Thalidomide#Adverse_effects - It did work for morning sickness, but an evil scientist at the FDA had stopped it from being sold in the US, depriving expectant mothers of helpful relief [3] https://en.wikipedia.org/wiki/Zidovudine https://en.wikipedia.org/wiki/Zidovudine - HIV and AZT actually did result in the laws allowing exemptions for terminal cases. The difference between those, and "right to try" nonsense is that the terminal disease exemptions still require a degree of solid evidence of function, and a demonstration of safety vs alternatives.

aaavl2821 8y ago

The alternative to high quality scientific data determining what drugs patients choose is corporate marketing efforts determining what drugs patients get. The FDA restricts "snake oil" sales by requiring products be marketed based on good data. Remove that requirement and patients will be bombarded by marketers and salespeople peddling exaggerated claims to get at the potentially lucrative right to sell a drug