A weekly advocacy message from Mary Woolley: "...everyone has the right to share in scientific advancement and its benefits..."

Mary Woolley

Dear Research Advocate,

This just in--the final version of the 21st Century Cures Act has been filed with the House Rules Committee in anticipation of a House vote next week.  And to understate the news: it’s great!! The bill contains mandatory funding of $8.75 billion for the NIH Innovation Fund and $550 million for FDA.  Compared to the version that passed the Energy and Commerce Committee, that’s $1.25 billion less for the Innovation Fund over five years.  But considering what Reps. Upton (R-MI-06) and DeGette (D-CO-01) were up against in securing this supplemental funding stream, and thinking about what these dollars could mean for medical progress, the end result is a HUGE victory. Click here for the final bill.  I know we are bearing down on the 4th of July holiday, but please take a moment to tweet your thanks to Reps. Upton (R-MI-06) and DeGette (D-CO-01) with #Cures2015 or #Path2Cures.

I was intrigued this week by two reports that address public perceptions of science.  I am always on the lookout for good work in this sphere.  I highly recommend spending a minute with a new report from the Royal Society of Chemistry as well as the new survey by the Pew Research Center teasing out the interaction of ideology and science.

Thinking of how science is conveyed and perceived, the recent Aspen Institute’s Spotlight Health program surfaced ways of thinking and talking about research for health that are worth considering as we gear up for a very busy July. Several sessions, for example, focused on “big data,” a term that-- let’s face it-- does not explain itself, much less produce that visceral “this is personally important to me” vibe.  But it can be explained in a way that brings it down to earth. 

One speaker clarified that ‘big data’ is distinguishable from ‘lotsa data’ by the technology that makes that data useful (think Google as the organizer of what was formerly ‘lotsa’ information on the Internet).  Another participant suggested that the policies that matter most today are those that ‘enable data to achieve its highest value.’  He went on to quote the 1948 UN Universal Declaration on Human Rights, which says in part: “...everyone has the right...to share in scientific advancement and its benefits.” This arrives right on time for celebrating the Fourth of July and all that it stands for, reminding us to frame arguments supporting science in terms of serving the public and national interest. 

In the spirit of assuring that everyone has a right to the benefits of science, it makes no sense that the Agency for Health Research and Quality (AHRQ) is slated for termination in the House Labor-H bill, while in the Senate bill it receives a nearly 30 percent budget cut. It is ‘code blue’ urgent for us all to talk up the importance of AHRQ’s work-- for example, studying how to prevent hospital-acquired infections and assuring that the patient perspective truly is incorporated into research and regulation that affects us all.  The next crucial juncture for AHRQ-funded research will come when the appropriations process is resolved in what is likely to be an omnibus appropriations bill later on.  But we need to get to work now, letting members in both parties and in both Houses know that patients can’t afford this assault on AHRQ.  Please consider making this one of your causes for the summer.  Write an op-ed.  Write an LTE (virtually any topic in health speaks to the need for sound healthcare delivery, and that’s where AHRQ comes in). Email your representatives now, and keep emailing them about it.  

Meanwhile, what’s at stake in the ill-conceived revision to the America COMPETES Act is summarized effectively in Rep. Derek Kilmer’s (D-WA-06) recent Washington Monthly post. While the fate of COMPETES in the Senate remains unclear (so far, the Senate has chosen to consider it in pieces, and there has been no action on the National Science Foundation), we can help ensure that any final action does good rather than harm.  Again, the key is to make noise, using the media and repeated contact with Congress as your primary channels.  Shoot me an email and we’ll go at this together!   

Sincerely,

Mary Woolley

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Public sentiment is everything. With public sentiment, nothing can fail; without it nothing can succeed.
Abraham Lincoln