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> The sad part is ofcourse the one about companies not being interested in drugs for rare diseases, even more when they're not needed frequently. I really hope

by hh3k0 9y ago

> The sad part is ofcourse the one about companies not being interested in drugs for rare diseases, even more when they're not needed frequently. I really hope we can find a solution to that. As that'll not happen all by itself because there's less money in that, pharmaceutical companies should be legally required to spend a certain amount of their research budget on rare diseases. A nice follow-up read regarding one-shot cures: https://arstechnica.com/tech-policy/2018/04/curing-disease-not-a-sustainable-business-model-goldman-sachs-analysts-say/ https://arstechnica.com/tech-policy/2018/04/curing-disease-n...

xiphias 9y ago
What I hope and see (as a person with a rare disease) is that the quality of information about the human body is increasing rapidly. New trials are much more gene-aware than 10 years ago, so just repeating the same trials help diagnosing rare (mostly genetic) diseases.
49bc 9y ago
>As that'll not happen all by itself because there's less money Aren’t we both reading the same article about that happening “by itself”?
pc86 9y ago
Yes, why allow companies to choose how to spend their own money? Let's regulate! Why spend $1 billion to help 10 million people when we can spend $1 billion to help 25,000?
bdcravens 9y ago
> pharmaceutical companies should be legally required to spend a certain amount of their research budget on rare diseases Assuming greed, wouldn't they identify the illnesses with the least likely abilities to cure? (or at the least, least likely to affect their profits, though perhaps they could focus on torpedo'ing a competitor in another area that focuses on a condition they don't)
elihu 9y ago
I think you'd be more likely to get a better outcome by taxing pharmaceuticals (or just make it part of regular taxes businesses in general pay) and using that money to fund research. If the same pharmaceutical wants to apply for a grant to work on a drug, that's fine but I don't think you're likely to get good results by forcing some them to work on a problem they're not already interested in solving.

by hh3k0 9y ago

xiphias 9y ago

What I hope and see (as a person with a rare disease) is that the quality of information about the human body is increasing rapidly. New trials are much more gene-aware than 10 years ago, so just repeating the same trials help diagnosing rare (mostly genetic) diseases.

49bc 9y ago

>As that'll not happen all by itself because there's less money Aren’t we both reading the same article about that happening “by itself”?

pc86 9y ago

Yes, why allow companies to choose how to spend their own money? Let's regulate! Why spend $1 billion to help 10 million people when we can spend $1 billion to help 25,000?

bdcravens 9y ago

> pharmaceutical companies should be legally required to spend a certain amount of their research budget on rare diseases Assuming greed, wouldn't they identify the illnesses with the least likely abilities to cure? (or at the least, least likely to affect their profits, though perhaps they could focus on torpedo'ing a competitor in another area that focuses on a condition they don't)

elihu 9y ago

I think you'd be more likely to get a better outcome by taxing pharmaceuticals (or just make it part of regular taxes businesses in general pay) and using that money to fund research. If the same pharmaceutical wants to apply for a grant to work on a drug, that's fine but I don't think you're likely to get good results by forcing some them to work on a problem they're not already interested in solving.