I "love" how Google just throws in "rare diseases" in to this, via their press release, as somebody who lives with 2 rare diseases that affect my peripheral nervous system. Actually, one of the diseases I have was discovered in the early 2000s on NIH grant funds at the Mayo Clinic.
This sounds wild, but it is true: Rare diseases are an absolute cash cow, and everyone should watch this. Our healthcare system in the US will be unsustainable if orphan drugs are not regulated (Which is why I naturalized as an European Union citizen, in addition to being American. I fret and worry about getting proper access to medical care every single day.): https://www.nytimes.com/2019/08/23/the-weekly/rare-diseases-...
(I do not believe that healthcare for all is unsustainable, but an unregulated free market will make it unsustainable.)
Just in case anyone was wondering, it is common to have a rare disease, and they are unfathomly expensive to have. In the US, the definition of rare disease (which really should be called "orphan conditions" based on the law) is tied to "orphan drugs" which in theory can collectively benefit 10% of the general population. There are a ton of orphan drugs being approved at the moment, which cost between hundreds of thousands of dollars per year to millions per year, in the US. The European estimate on rare diseases is more realistic and 6-8% of the general population has a rare disease.
So, do not think think that it cannot happen to you. You are naive to believe otherwise.
The European estimate on rare diseases is more realistic and 6-8% of the general population has a rare disease.
But not the same rare disease.
Orphan drugs collectively may benefit 10% of the population, but not individually.
Not that I disagree with what I think is your main point: a profit driven medical industry hurts those at the extremes, relative to those in the median. I don't know how awful that is or isn't. 100 years ago, those folks would just have suffered. It's a profit motive, in some part at least, which has fueled advanced treatments. If all healthcare and healthcare research were socialized, maybe the expensive treatments wouldn't exist at all.
What I'm not sure about is if you are critical of, or in favor of, this collaboration. Bringing "commercial-grade" AI to healthcare sounds like a good thing to me on its face. I've read here and there (perhaps it's sensational, but still) how some AI can be order or orders of magnitude more accurate than doctors when evaluating x-rays, or scans, or other diagnostics.
My worry here is in the profit motive of Google and the fact that, well, they suck these days in that they do not care about user privacy.
Obviously. Clearly you do not understand what it means to have a rare disease and that rare diseases play by a totally different set of rules than common health conditions.
AI can be order or orders of magnitude more accurate than doctors when evaluating x-rays, or scans, or other diagnostics
Rare diseases manifest much more dynamically than something that can be trained to an objective via AI.
There are huge ethical issues involved.
If all healthcare and healthcare research were socialized, maybe the expensive treatments wouldn't exist at all.
I do not know what you mean by socialized. Most of the groundbreaking research in general occurs via grants from governments. If that is what you mean by socialized, then I support that.
It sounds like you're saying saying that "orphan drugs" can benefit 10% of the population and are also "cash cows." Do I have that right? I ask because if that's true, it seems to me that this is a good thing. If it wasn't a cash cow, would companies still be incentivized to take on the risk of researching these drugs and going through the work of having them tested and approved?
Your post seems critical of Google, but I don't know if that makes sense. Isn't your main criticism with the healthcare system and laws surrounding it? I don't know if we can blame companies that operate within existing law. The blame should instead be passed to policy makers and their voters.
Comments
I "love" how Google just throws in "rare diseases" in to this, via their press release, as somebody who lives with 2 rare diseases that affect my peripheral nervous system. Actually, one of the diseases I have was discovered in the early 2000s on NIH grant funds at the Mayo Clinic.
This sounds wild, but it is true: Rare diseases are an absolute cash cow, and everyone should watch this. Our healthcare system in the US will be unsustainable if orphan drugs are not regulated (Which is why I naturalized as an European Union citizen, in addition to being American. I fret and worry about getting proper access to medical care every single day.): https://www.nytimes.com/2019/08/23/the-weekly/rare-diseases-...
(I do not believe that healthcare for all is unsustainable, but an unregulated free market will make it unsustainable.)
Just in case anyone was wondering, it is common to have a rare disease, and they are unfathomly expensive to have. In the US, the definition of rare disease (which really should be called "orphan conditions" based on the law) is tied to "orphan drugs" which in theory can collectively benefit 10% of the general population. There are a ton of orphan drugs being approved at the moment, which cost between hundreds of thousands of dollars per year to millions per year, in the US. The European estimate on rare diseases is more realistic and 6-8% of the general population has a rare disease.
So, do not think think that it cannot happen to you. You are naive to believe otherwise.
But not the same rare disease.
Orphan drugs collectively may benefit 10% of the population, but not individually.
Not that I disagree with what I think is your main point: a profit driven medical industry hurts those at the extremes, relative to those in the median. I don't know how awful that is or isn't. 100 years ago, those folks would just have suffered. It's a profit motive, in some part at least, which has fueled advanced treatments. If all healthcare and healthcare research were socialized, maybe the expensive treatments wouldn't exist at all.
What I'm not sure about is if you are critical of, or in favor of, this collaboration. Bringing "commercial-grade" AI to healthcare sounds like a good thing to me on its face. I've read here and there (perhaps it's sensational, but still) how some AI can be order or orders of magnitude more accurate than doctors when evaluating x-rays, or scans, or other diagnostics.
My worry here is in the profit motive of Google and the fact that, well, they suck these days in that they do not care about user privacy.
Obviously. Clearly you do not understand what it means to have a rare disease and that rare diseases play by a totally different set of rules than common health conditions.
Rare diseases manifest much more dynamically than something that can be trained to an objective via AI.
There are huge ethical issues involved.
I do not know what you mean by socialized. Most of the groundbreaking research in general occurs via grants from governments. If that is what you mean by socialized, then I support that.
It sounds like you're saying saying that "orphan drugs" can benefit 10% of the population and are also "cash cows." Do I have that right? I ask because if that's true, it seems to me that this is a good thing. If it wasn't a cash cow, would companies still be incentivized to take on the risk of researching these drugs and going through the work of having them tested and approved?
Your post seems critical of Google, but I don't know if that makes sense. Isn't your main criticism with the healthcare system and laws surrounding it? I don't know if we can blame companies that operate within existing law. The blame should instead be passed to policy makers and their voters.