A Weekly Advocacy Message from Mary Woolley: Promising process; disappointing progress


Dear Research Advocate:

The omnibus appropriations bill about to become law demonstrates that bipartisanship and pseudo-regular order is achievable. We won’€™t know for sure if we have true ’€œregular order’€ until Congress proceeds through the FY15 appropriations process in a timely manner ’€” something that hasn’€™t happened for many years. The importance of regular order is that the public’€™s interests are heard from in hearings, and every Member of Congress participates in priority-setting instead of only having the opportunity to cast a single up-or-down vote. Regular order is worth working toward, since at least one priority we all care about did not fare well in the omnibus.

The omnibus has failed to fund NIH at a level that fully reverses the impact of sequestration on the agency’€™s baseline funding level, much less establishes a growth trend that can fully unleash the potential inherent in the sequencing of the human genome and other research breakthroughs. As Drs. Paul Stoffels and Alan Leshner make crystal clear in an op-ed in Politico Magazine, we can’€™t settle for ’€œbetter than sequestration.’€ If our nation wants to thrive, we need to grow our investment in science. Between 2010 and 2013, U.S. federal investments in science fell to less than 1% (.82%) of the economy. That’€™s the lowest it’€™s been in 50 years! As you know, this comes at a time when foreign nations are rapidly ramping up their R&D programs and taking a page from our playbook. Remember that global competitiveness in medical research is a pivotal determinant of our global economic competitiveness overall. We aren’€™t just talking about the future of our scientific enterprise, we are talking about the future of our economy. Are we truly willing to cede leadership in global R&D? (See also our statement cited in The Hill and other media outlets, as well as my interview today with UDC.)

On the positive side, the omnibus provides funding increases for the CDC, NSF and FDA, and it compensates for the $85 million in FDA user fees sequestered in 2013. While that does not address the problem of user fee sequestration going forward, it does send a strong message that sequestration of user fees was not the intent of Congress when it passed the Budget Control Act of 2011.

This past weekend, I was saddened to learn of the passing of Sam Berns, a courageous 17-year-old diagnosed with Hutchinson-Gilford progeria syndrome. NIH Director Francis Collins’€™ words marking Sam’€™s death are deeply touching. In his statement, he provides testimony to the power and the potential of research. Rare diseases like progeria are omnipresent reminders that families coping with such conditions are desperately awaiting the promise of research. Sam’€™s parents, along with his aunt, formed the Progeria Research Foundation to bring progeria from obscurity to the forefront of successful translational research, giving hope to patients and families. We will be honoring the foundation with the Paul G. Rogers Distinguished Organization Advocacy Award at our annual Advocacy Awards Dinner on March 12. It will be an especially poignant evening as Sam Berns is recalled to mind. I hope you will join us to pay tribute to PRF and other award winners.

Finally, in case you missed it, I am sharing FasterCures’€™ ’€œTop 10 Medical Research Issues & Trends to Watch in 2014,’€ issued last week. Worth reviewing!


Mary Woolley

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Without research, there is no hope.
The Honorable Paul G. Rogers