This is what I think I've been pointing out for a while. We don't have a foundation like Michael J Fox that funds translational research. The existing stroke association model doesn't look like it will step up to the plate.
See here for how to do that;
http://www.oc1dean.blogspot.com/2012/05/engaging-with-fda-guide-for-foundation.html
The Atlantic article here:
http://www.theatlantic.com/health/archive/2012/05/will-patients-bear-the-burden-for-developing-their-own-treatments/256985/
Soon, you won't only be responsible for managing your disease -- you may also be expected to help find your own cure.
Patients who take a close look at medical science in search of
treatments are often appalled by what they discover.(no kidding!) On the one hand,
there's academic research, a self-contained and self-absorbed universe
of its own where data may be internally consistent (on a good day) and robustly reproducible (on a very good day), yet often has depressingly little relevance to real-world clinical conditions.
Meanwhile, many medical products companies, faced with an
increasingly unstable environment characterized by high failure rates
and huge headwinds from regulators and payors, seem to be jumping in and
out of therapeutic areas -- and R&D models -- like a virus
desperately mutating in the face of negative selective pressure, or
perhaps like the computer in War Games, hurtling toward the seemingly inevitable conclusion that the only winning move is not to play.
It's hardly surprising, then, that many patient groups feel
increasingly obliged to take matters into their own hands. The Myelin
Repair Foundation (MRF) now conducts its own translational research, and one cystic fibrosis patient's family was motivated to fund new therapies, channeled through the CF Foundation.
Rest of article at the link.
Hi,
ReplyDeleteI came to your blog and have been reading along your posts. I decided I will leave my first comment.