A weekly advocacy message from Mary Woolley: Six days and counting…

Mary Woolley

Dear Research Advocate: 
Pope Francis’ visit to Washington has been a breath of fresh air, but now Congress must get to work and reach a funding agreement that avoids a government shutdown beginning October 1st. Didn’t we learn from the last shutdown, just two years ago? Young patients were turned away from clinical trials at NIH. Disease outbreaks were not monitored because CDC epidemiologists were furloughed. Drugs, devices and other medical products pending FDA approval were delayed. All of this -- and much, much more -- was then and is now, entirely avoidable. Advocates should not be complacent; a government shutdown screams “broken government,” and should not even be on the table. Contact your legislators with this editable message. (For more information on government shutdowns, I recommend this Q&A.)
Presidential candidates continue to be in the news.  We think all the candidates should be able to articulate to the American electorate how they would demonstrate their priorities through their “First Budget” if elected. Earlier this week in Des Moines, I joined the Concord Coalition for an interactive budget program that encourages Iowans to engage in an exercise to determine how federal funding should be allocated. Many participants found it especially challenging to deal with health care expenditures, and were surprised at how little public money -- relatively speaking -- is dedicated to research that will help contain those costs. Since Iowans have a great deal of opportunity to engage candidates for President, it was encouraging to see how knowledgeable they are about national issues. The goal of the First Budget initiative is similar to our Campaign for Cures voter education initiative, and more broadly to Research!America’s mission overall -- heightened public engagement in the importance of faster medical progress can change the national conversation during and after election season!
Meanwhile, back in Washington, the Senate HELP (Health, Education, Labor and Pensions) Committee is working on a medical progress initiative, companion legislation to the 21st Century Cures Act (HR 6) that passed by an overwhelming margin in the House in July.  Rare Disease Legislative Advocates (RDLA) is spearheading a day of action tomorrow, September 25, to urge members of the Senate to make this bill a priority and get it done promptly.  Please join in by using the hashtag #Cures2015, sending an email to your Senators, and by calling their offices with the message that patients can’t wait.
For those of you in the DC metro area, please consider joining an event hosted in partnership by two Research!America members: Food Allergy Research & Education (FARE) and Mylan. The FARE Walk for Food Allergy is Saturday September 26 at the Rockville Town Square in Maryland. Research!America is proud to issue an update of our food allergies fact sheet in concert with this important awareness building event. Check the FARE website for locations of the more than 50 food allergy walks nationwide.
Finally, courtesy of the Golden Goose Awards program, a new message about silencing your cell phones: “Did you know that your smartphone is an excellent example of federally funded research? Yes, from the touchscreen, to the multi-core processors, virtually every component of your phone has its origins in basic research funded by the National Science Foundation, the Department of Defense, NASA, and the Department of Energy.” Distinguished scientists were honored in an uninterrupted ceremony at the Library of Congress last week.  Several members of Congress, from both sides of the aisle, spoke out for science. A few soundbites: “Education and research are the building blocks of everything we want to accomplish…” (Rep. Bob Dold, R-IL-10); “Let research decisions be made by researchers, not by policymakers…” (Rep. Suzanne Bonamici D-OR-01); and “Fully fund science” (Rep. Jim Cooper, D-TN-05, aka “Father Golden Goose”). 


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Luck shouldn't play a role in why I'm alive.
Laurie MacCaskill, a seven-year pancreatic cancer survivor