...[I support the] NIH's recent commitment of $120 million over five years for drugs and therapies for rare and neglected diseases....But the real question...[is] will that make a difference?
One of [the] meetings I attended over the last 3+ months of travel was a recent summit on innovation and access by the National Organization of Rare Diseases (apparently "neglected" is implied? :) ) ...It was their annual meeting, and as somewhat expected, included an initial 1.5 hour "congratulations" and offering of thanks to one another for their "contributions to rare disease research" as a kickoff to the meeting.
Excuse me here for being cynical and a bit brash, but were they congratulating one another for a drug pipeline that a) is insanely costly, b) takes approx. 17 years to get a drug to market IF it succeeds, c) doesn't work in favor of the community they're serving? ...
[I]n the midst of all of the congratulating for thousands of people in their "network" not having any sort of drug or treatment, these two words ["innovation" or "access"] - the themes of the event - went unmentioned.
I raised my hand to have a turn, puzzled by all of this and made a comment, which was later backed and echoed by Janet Woodcock of the FDA and Francis Collins, the famous geneticist (thanks to both). I talked about the reasons we were all there - to talk about "innovation" and "access" in terms of access to research, accelerating scientific discovery, new "innovative" models to help fix this broken pipeline we all were dancing around, and get therapeutics and results to patients faster, cheaper and more successfully. It was astonishing a) how many people were nodding and smiling when I brought this to the forum and b) the fact that if not said, it may have gone unmentioned for the rest of the meeting. All of a sudden, the tone changed - with Francis Collins emphasizing the importance of Open Access and Janet Woodcock even saying "Put information into the public domain".
Small wins in an area that still needs a bit of coaching (like others, certainly) on making better use of a poorly funded wing of disease research.
Will $120 million over 5 years make a difference? Certainly, in some respect. How large of a difference depends on what model is constructed to hopefully better share the scientific knowledge we're pumping tens of hundreds of thousands of dollars into, the funding model, etc. Perpetuating the "walled garden" approach does not "fix" the system....
PS: Note that Francis Collins may soon be the next Director of the NIH.
Posted by
Peter Suber at 5/30/2009 11:48:00 AM.
The open access movement:
Putting peer-reviewed scientific and scholarly literature
on the internet. Making it available free of charge and
free of most copyright and licensing restrictions.
Removing the barriers to serious research.
I recommend the OA tracking project (OATP) as the best way to stay on top of new OA developments. You can read the OATP feed on a blog-like web page or subscribe to it by RSS, email, or Twitter. You can also help build the feed by tagging new developments you encounter.
