NINDS Budgets: The Good, the Bad, and the Ugly
Nonprofit Forum 2013
NINDS Budget from 40,000 feet
• Appropriation for FY 2013 was $1.53B – 5.7% < 2012
• Budget request for FY 2014 was $1.64B, but CR expected to continue
spending at current sequestration levels
• Normal NINDS budget allotment:
– ~87% extramural grants
– ~10% intramural programs
– Remainder to administrative
• Current pay line is 14 percentile
• Only 18-20 percent of first submissions are funded
• Our nonprofit organizations will continue to receive a lot of
applications
How Does NINDS Make Funding Decisions?
• Not by diseases
• “The NIH does not expressly budget by category [disease area].”
• World's gold-standard process - Two-tiered review process:
– Peer review based on study sections (recently revised)
– Review by National Advisory Council (Program Staff proposes to Council
based on peer review; Council recommends to Director; Director and
NINDS leadership make decisions
• So, it all begins with the number and quality of the applications
submitted
Successful Advocacy Approaches
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In doing what you need to do for your patients, do it WITH the NINDS, not
TO the NINDS
Get to know and work with your Program Director (PD); seek your PD's
advice early and often
Keep your PD well informed regarding the state of your science and needs
Attend meetings of the National Advisory Council
Become familiar with all the funding mechanisms -- e.g., R01s, R13
(workshop), Clinical Trial grants, K grants (training), U grants & Cooperative
Agreements, small business grants (SBIR)
Become familiar with and stay abreast of the NIH trans-Institutional
mechanisms -- e.g., NCATS programs, Common Fund mechanisms
Keep your investigators alert to opportunities within these various mechanisms
and to deadlines involved
Play an active role in applications, when appropriate -- e.g., letters of support,
co-applicant, alert your PD
Successful Advocacy Approaches (Cont’d)
• Explore/consider with your PD possibility of Program Announcements
(w/ and w/o set-asides), RFAs & RFPs, etc., especially when
excitement grows re a general topic/requirement
• Grow your field: Assemble your investigators; insist on collaboration;
provide as much financial support as you can (possibly seed grants to
help collect sufficient preliminary data to build compelling
NIH/NINDS applications)
• Build public-private partnerships: invite NINDS/NIH staff to your
meetings; involve industry partners (or potential industry partners) to
your key meetings; play matchmaker for your investigators (with
potential collaborators, NINDS staff, industry partners)
• Advocate for more robust NIH and FDA budgets -- "A rising tide lifts
all boats;" help get the NIH more resources and nurture your
investigators so they can compete successfully for those resources on
their (and your) own merits
Unsuccessful, Ill-Advised Advocacy Approaches
• Playing the "us and them"/ "my disease first"/zero sum political games
in which you attempt to get political reps to authorize/appropriate
research dollars specifically for your disease and force research
programs down the throat of the NIH/NINDS
• As Congress was doubling NIH budget over five years (1999-2003),
agreement achieved between Congress and NIH Director Harold
Varmas to "let science make the call." That is, use the larger NIH
budget to "fund the best science" rather than members of congress
deciding which diseases should be funded
• Institute of Medicine Report of 1998 encouraged funding decisions to
be based on scientific merit and disease burden -- advocates began to
emphasize lobbying their scientists to do more/better science, working
WITH the NIH, and lobbying congress for greater resources for NIH,
FDA, etc.
Unsuccessful, Ill-Advised Advocacy Approaches (Cont’d)
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Devoting excessive time and energy to an attempt to assess whether your
disease "is getting its fair share" of attention/funding is usually counterproductive
Efforts have been made to better "track" disease-specific NIH funding
(RePORT, etc.); but, no such system is adequate in gauging the total
investment in any one disease for various reasons:
– all our diseases have benefited tremendously from the basic and translational
science that transcends categorization by disease
– we never know from where the "next big thing" in our disease is going to come;
"We don't make breakthroughs where we plan them; we make them where we can;”
Medical research history is rich with discoveries made "accidentally" while
working on something different (Penicillin by Alexander Fleming; Pacemaker;
radioactivity, etc.)
– So many of our diseases have common ground in terms of mechanisms of
damage/action -- breakthroughs in any of our diseases, even rare ones, are likely to
have beneficial impact on a host of other diseases
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So, better to spend time collaborating as widely and fully as possible with all
the players in & outside your community along "successful" lines above.