5 ms·

The point that some people miss here is that it doesn't matter. If you are going to die from ALS in 2 years, are you going to feel satisfied when the FDA says "

The point that some people miss here is that it doesn't matter. If you are going to die from ALS in 2 years, are you going to feel satisfied when the FDA says "we won't let you try this; it probably won't cure you"? Even if the FDA is this incredibly competent organization with no corruption, people should have a right to try to live. It's the most dystopian form of the nanny state mentality, IMO.

dillydogg 3y ago
Who is going to pay for the treatments without supporting data? I don't think people have the right to demand healthcare workers to administer whatever strikes their fancy either. I know you aren't necessarily suggesting this, but I wouldn't start an IV bleach drip on someone because they have a "right to live". Time is so limited in the clinic that I don't think there is room for trying whatever the patient wants on demand. In an ideal world there should be some room for this approach, but (at least in the US hospitals I've worked at) there just isn't the infrastructure. Something with phase 2 data, sure, that seems like a good candidate for compassionate use. ALS is devastating, I'm sorry for you and the person you are close to.
- lend000 3y ago
  You could probably answer all of your own questions pretty easily and recognize that I'm not talking about a bleach injection. Maybe your gripes make more sense in a socialized medicine country. Sure, they have to sacrifice people at the edges. But in the US, there's no excuse. It's like the worst of both private and public medicine. In terms of benefitting the collective, allowing experimentation on willing subjects with terminal illnesses could really improve medicine, too. It's really just a lose-lose-lose with the current approach. Well, some people win, who manufacture the types of drugs that don't fully cure you but keep you dependent on the prescription until you die. If you don't think that's a factor in the FDA's decisions I have a bridge to sell you.
  - ethanbond 3y ago
    > If you don't think that's a factor in the FDA's decisions I have a bridge to sell you. That's a big claim. Presumably you have big evidence to back it up?

dillydogg 3y ago

Who is going to pay for the treatments without supporting data? I don't think people have the right to demand healthcare workers to administer whatever strikes their fancy either. I know you aren't necessarily suggesting this, but I wouldn't start an IV bleach drip on someone because they have a "right to live". Time is so limited in the clinic that I don't think there is room for trying whatever the patient wants on demand. In an ideal world there should be some room for this approach, but (at least in the US hospitals I've worked at) there just isn't the infrastructure. Something with phase 2 data, sure, that seems like a good candidate for compassionate use. ALS is devastating, I'm sorry for you and the person you are close to.

lend000 3y ago
You could probably answer all of your own questions pretty easily and recognize that I'm not talking about a bleach injection. Maybe your gripes make more sense in a socialized medicine country. Sure, they have to sacrifice people at the edges. But in the US, there's no excuse. It's like the worst of both private and public medicine. In terms of benefitting the collective, allowing experimentation on willing subjects with terminal illnesses could really improve medicine, too. It's really just a lose-lose-lose with the current approach. Well, some people win, who manufacture the types of drugs that don't fully cure you but keep you dependent on the prescription until you die. If you don't think that's a factor in the FDA's decisions I have a bridge to sell you.
- ethanbond 3y ago
  > If you don't think that's a factor in the FDA's decisions I have a bridge to sell you. That's a big claim. Presumably you have big evidence to back it up?