A Weekly Advocacy Message from Research!America: Long-term commitment, short-term action. We need both.

Dear Research Advocate:

In a terrific op-ed in the Sacramento Bee, Greg Sorensen, MD, CEO of Siemens Healthcare North America and Research!America board member, writes about a young girl, Kayla Saikaly, diagnosed with aplastic anemia at 13-years-old and the life-saving bone marrow transplant she received at Southern California’s City of Hope Hospital.

FASEB Vice-President elect and Director of the Human Genetics Program at Sanford-Burnham Medical Research Institute, Dr. Hudson Freeze, appeared on a segment of San Diego’s U-T TV daily program “The Roger Hedgecock Show” with Morgan Fischer, an 8-year-old girl with a disorder called hypophosphatasia that severely hinders proper bone formation. Dr. Freeze discussed a groundbreaking therapy that has enabled the growth of new bone tissue in Morgan and other patients with this rare disease, dramatically improving the quality of their lives.

Whether or not Congress fosters medical progress through robust research funding and policies incentivizing private-sector medical innovation is not an academic discussion. It’s decision-making that bears on the lives of real people. It’s about Kayla and Morgan.

The theme underlying Research!America’s Medical Progress NOW initiative is that as Congress considers a variety of proposals aimed at generating more medical progress in the future — supplemental funding strategies, ways to make the innovation pipeline work smarter and faster over time — there is an opportunity to take action this year to reinvigorate medical progress.  That opportunity is the FY15 appropriations process, and we ask appropriators to seize it.  Kids like Kayla and Morgan, Americans all over our country fighting for the chance to lead normal lives or simply hold on to the lives they have, can’t place their illnesses on pause while Congress chooses between long-term commitment and short-term action.  We need both.  We need FY15 appropriation levels that enable medical and health research to flourish, not flounder.  Read our letter to the leaders of the House and Senate Appropriations Committees here.  And please send a note to your representatives in Congress urging them to speak up about the need for medical progress now.

Short-term action and long-term commitment. That’s what Research!America’s Ask Your Candidates! national voter education initiative is all about.  Voters should know whether candidates for federal office share their perspective on the priority of medical progress, because, at the end of the day, it will be American voters who decide whether our nation’s leaders accelerate medical progress or stall it.

Last Friday in Georgia, Ask Your Candidates! hosted its first on-the-ground event. All candidates running for U.S. Senate from Georgia were invited to join local patients and families, as well as other advocates for medical research and technology, including students, university officials and local business leaders, for a lively discussion about the roles of the private sector and government in the research pipeline. Childhood cancer advocates, including families and children who know firsthand the significance of faster medical progress, were among the attendees.

Click here to read a transcript of the remarks and click here to view photos.

Thank you to our Ask Your Candidates! partners, whose engagement and hard work helped make this event a true success. If you haven’t done so already, please become a partner so the initiative can extend its reach. The unexpectedly large attendance and broadscale participation by Senate campaigns in the Georgia event demonstrated that medical progress is a topic worthy of discussion this campaign season. Let’s take that and run with it!

This week’s letter was authored by Ellie Dehoney, Vice President of Policy and Advocacy at Research!America.


Ellie Dehoney

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