A Weekly Advocacy Message from Mary Woolley: “Ordinary Americans” at risk

Dear Research Advocate:

Yesterday, I joined Diane Rehm and other guests on her nationally syndicated radio program to discuss how sequestration impacts “ordinary Americans.” I was struck by how deep and distressing the damage is, in so many sectors, including but not limited to our own. Yet somehow the pain is not acute enough to force action.

What strikes me is how low our collective expectations have sunk when it comes to reinvigorating U.S. economic growth and prosperity. Our nation can do better; why don’t we maintain high expectations and hold our elected officials accountable for setting the policy stage to accomplish them? Policy makers should protect discretionary spending, make hard tax and entitlement reform decisions, and commit to policies that foster economic growth and societal (including health) progress. Part of that equation is ample, stable federal funding for medical research and policies that spur private sector medical innovation.

A glimmer of hope for policies creating such an environment can be seen in the Senate agricultural appropriations bill, which provides the FDA an increase of $96 million above FY13 and full access to collected user fees, previously subject to sequestration. The House also provides a modest increase for FDA. But don’t jump for joy; these increases still leave FDA worse off than FY12 and grossly underfunded. That we think of this as an increase is another example of lowered expectations. Meanwhile, the Senate 302(b) allocation levels for FY14 appropriations were adopted today. As expected, the Labor/H budget is significantly higher than the House’s. The Senate and House numbers are so far apart that reconciliation seems unlikely; the odds are still on flat funding minus sequestration. This is a low-expectation, low-outcome scenario, to be sure, and we should all fight against it. If we don’t, “ordinary Americans” will continue to suffer.

What do I mean by “fight”? Spanish researchers are fighting tooth-and-nail to protect medical research funding. Their science budget has been cut by nearly 40% after doubling in 2009. In a united front, researchers in 19 cities across Spain held protests. Some 5,000 scientists marched to the economic ministry under the banner “let’s save research” to prevent the “dismantlement of a system that took decades to be created.” Are we heading down a similar road? Are U.S. scientists ready to march?

Ironically, just as our policy makers consider a new round of cuts to the NIH, countries like Japan are emulating our successes. ScienceInsider reports that Japan is establishing a new national system to bring researchers together across sectors to support medical research, development and innovation. For good reason, this system is being modeled on all that is outstanding in NIH and DARPA. I’ve said over and over again that other nations are taking pages from the U.S. playbook and driving their economies and the health and productivity of their workforce by ramping up investment in R&D; meanwhile we seem to be writing a new playbook — a losing one. One more reason to stop lowering our national expectations and start leading the world again!

Speaking of right and wrong: In a letter to the editor published this week in The New York Times, Ellie Dehoney, our vice president of policy and programs, cited the need for a combination of private sector ingenuity and public sector incentives to right an unintended wrong affecting small patient populations. As she put it, “People who agree to participate in a clinical trial … should not help prove that there is hope, only to have it dashed [by losing access to the drug].” It’s yet another example of expectations that are being lowered by our failure to sustain the course of research and innovation, which has historically been a win-win endeavor. Time to speak your mind to your elected representatives.

Sincerely,

Mary Woolley

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