4 ms·

This horrible disease touched my extended family. Unfortunately, rare 'orphan' diseases are under-funded because there aren't enough patients to make them profi

This horrible disease touched my extended family. Unfortunately, rare 'orphan' diseases are under-funded because there aren't enough patients to make them profitable. More Pharma shareholder value with yet another drug that appears to have a slight statistical effect on Alzheimer's than with a full cure for progeria.

DoreenMichele 4y ago
Unfortunately, rare 'orphan' diseases are under-funded because there aren't enough patients to make them profitable. "Minor" (cough) flaw in our so-called healthcare system. I don't know how to fix it, sadly. But, wow, is this "your money or your life" medical system not exactly optimizing for positive health outcomes for the people.
Invictus0 4y ago
This is conspiracy theory. The US does fund a lot of research into rare diseases, which would never be economical to research otherwise. There are only so many dollars to go around, obviously, and research into common diseases has the potential to help more people.
- ethanbond 4y ago
  If anything, research into effective treatments for common diseases is underfunded. It’s obviously bad news to have a rare disease, but it’s frankly astounding that we still don’t have rock solid effective knowledge* for how to maintain effective diets. * “Move more eat less” or CICO don’t count since people have been saying this forever, people have been attempting it forever, and people fail at it at extremely high rates, so it’s definitionally not effective.
refurb 4y ago
Unfortunately, rare 'orphan' diseases are under-funded because there aren't enough patients to make them profitable. That's not true. Genzyme (acquired by Sanofi for $20B) has a whole portfolio of orphan disease drugs, they do nothing else. The success of rare disease drugs actually inspired a lot of big pharma to get into it too.

4 ms·

This horrible disease touched my extended family. Unfortunately, rare 'orphan' diseases are under-funded because there aren't enough patients to make them profi

by danbmil99 4y ago

DoreenMichele 4y ago
Unfortunately, rare 'orphan' diseases are under-funded because there aren't enough patients to make them profitable. "Minor" (cough) flaw in our so-called healthcare system. I don't know how to fix it, sadly. But, wow, is this "your money or your life" medical system not exactly optimizing for positive health outcomes for the people.
Invictus0 4y ago
This is conspiracy theory. The US does fund a lot of research into rare diseases, which would never be economical to research otherwise. There are only so many dollars to go around, obviously, and research into common diseases has the potential to help more people.
- ethanbond 4y ago
  If anything, research into effective treatments for common diseases is underfunded. It’s obviously bad news to have a rare disease, but it’s frankly astounding that we still don’t have rock solid effective knowledge* for how to maintain effective diets. * “Move more eat less” or CICO don’t count since people have been saying this forever, people have been attempting it forever, and people fail at it at extremely high rates, so it’s definitionally not effective.
refurb 4y ago
Unfortunately, rare 'orphan' diseases are under-funded because there aren't enough patients to make them profitable. That's not true. Genzyme (acquired by Sanofi for $20B) has a whole portfolio of orphan disease drugs, they do nothing else. The success of rare disease drugs actually inspired a lot of big pharma to get into it too.