A Weekly Advocacy Message from Mary Woolley: Celebrating champions

Dear Research Advocate:

Research!America’s annual meeting and 25th anniversary Advocacy Awards Dinner were very special. At our annual meeting we heard thoughtful remarks from Rep. David Joyce (R-OH-14) about the importance of research as part of investing in the future of America. Kathy Giusti, founder of the Multiple Myeloma Research Foundation, epitomized the power of patient advocacy, making the seemingly impossible happen through her commitment to overcoming barriers to finding a cure. Our awards dinner showcased the commitment and impact of remarkable champions for science and for medical progress. Congressmen Frank Wolf (R-VA-10) and Chaka Fattah (D-PA-02); Glenn Close, Jessie Close and Calen Pick; Dr. Reed Tuckson; Kathy Giusti; Dr. Leroy Hood; and the Progeria Research Foundation were honored not only for what they have accomplished but for demonstrating that such accomplishments are possible. All of us draw from their strength. Click here to view the commemorative booklet and our 25th anniversary video and click here to view photos from the dinner.

Champions matter. We’re witnessing renewed calls for significant annual increases for agencies central to medical progress.

  • On Tuesday, Assistant Senate Majority Leader Dick Durbin (D-IL) introduced the American Cures Act, which would establish a trust fund to supplement annual appropriations, enabling yearly increases of at least 5% — adjusted upward for growth in GDP — for NIH, CDC, the VA, the Department of Defense health programs and other key agencies.
  • Senate Appropriations Chairwoman Barbara Mikulski (D-MD) has raised a similarly compelling plan for increasing annual appropriations for NIH by 5% plus medical research inflation to compensate for the inflation-adjusted declines NIH has seen in recent years.
  • Sen. Elizabeth Warren (D-MA) is working on science funding legislation; our awardee, Congressman Fattah, and Sen. Tammy Baldwin (D-WI), have bills pending that are designed to accelerate medical progress.
  • Last but certainly not least, Congress made a bipartisan statement about the importance of medical research by passing legislation in both houses to increase it. House Majority Leader Eric Cantor (R-VA) developed the plan to take unused funds from those contributed by taxpayers to Presidential campaigns, to increase funding for pediatric research at NIH. 

But not all of the legislative news is good. H.R. 4186, the Frontiers in Innovation, Research, Science and Technology Act (FIRST Act), introduced in the House Science Committee by Reps. Larry Bucshon, MD (R-IN) and Lamar Smith (R-TX) was marked up this morning by the Subcommittee on Research and Technology. In its current form, this bill does little to close the “innovation deficit,” an apt descriptor developed by AAU and APLU. The bill leaves social, behavioral and economic research woefully underfunded and creates a policy environment that doesn’t foster innovative research. We remain committed to working with legislators to pass a bill that aligns the needs of our nation with research worthy of taxpayer support. As an alternative to the FIRST Act, the ranking House Science Committee Democrat, Rep. Eddie Bernice Johnson (D-TX-20), introduced H.R. 4159, the America COMPETES Reauthorization Act of 2014, which would reauthorize research, innovation and STEM education programs at NSF, National Institute of Standards and Technology, and Office of Science and Technology Policy.

Research needs support now like never before. New information tells us that Alzheimer’s is claiming many more lives than previously thought. We need more researchers working to put this fatal disease in the history books. Yet, as a widely reported analysis by American Society for Biochemistry and Molecular Biology President Jeremy Berg, PhD, shows, between 500 and 1,000 fewer scientists were funded by NIH last year. That’s a lot of careers on the line and a lot of progress that won’t happen anytime soon. An op-ed in the Wall Street Journal by Johns Hopkins President Ronald J. Daniels and Hopkins Medical School CEO and Dean Dr. Paul Rothman underscores the plight of young scientists, many of whom are leaving the country and/or the field. This is happening at a time when countries like China are making targeted investments to recruit more than 3,000 talented young scientists during the next 10 years.

Advocacy by individual champions can be magnified when we all speak with one voice. We witnessed the power of collective action this week when the Centers for Medicare and Medicaid Services shelved a misguided set of revisions to the Medicare Part D prescription drug program. Research!America joined others in speaking out. We are thrilled that CMS reversed course. Advocacy works! Spread the word.

Sincerely,

Mary Woolley

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