A Weekly Advocacy Message from Mary Woolley: A long letter with timely news


Dear Research Advocate:

Today, Senator Tom Harkin (D-IA) ’€” one of the most effective and dedicated champions of medical and health research ever to serve in public office ’€” introduced major new legislation, the Accelerate Biomedical Research Act.  This visionary legislation would increase the budget caps in order to boost National Institutes of Health (NIH) funding to $46.2 billion by FY 2021, a strategy for restoring NIH purchasing power without cutting into funding for other national priorities. You can view my statement on the legislation here and our thank you letter to the Senator here.  It would be terrific if you would write a letter of support for the legislation and send a message encouraging your Senator to sign on.

There’€™s more good news to share! The Senate Labor-H bill and accompanying report language were released today.  We are grateful to Appropriations Committee Chairwoman Barbara Mikulski (D-MD) and Labor-H Subcommittee Chairman Harkin for helping to conceive of, and agreeing to include, report language to fund a Blue Ribbon Commission on science literacy and public appreciation of science. We’€™re pleased to have played a role in making this happen but every science advocate deserves credit when federal leaders take a step like this.

In terms of FY15 funding, you may recall that the Senate Labor-H subcommittee proposed NIH be funded at $30.5 billion, a $605.7 million increase, or about a 2% bump over FY14 levels.  The proposed measure also funds CDC at nearly $6 billion, a 3.3% increase from FY14 and funds AHRQ at $373.3 million, a mere .6% increase from FY14.  With the appropriations momentum stalled, rumors are floating around the Hill that the House will soon consider a Continuing Resolution or CR (extending current spending levels) through the election and potentially into December. 

In a must-read editorial in Science, Joanne Carney, Director, Office of Government Relations of the American Association for the Advancement of Science (AAAS), speaks out on the intersection of science, policy, and advocacy. Dr. Vint Cerf of Google, Mariette DiChristina of Scientific American, Dr. Neal Lane of Rice University, and Dr. Stephen Fienberg of Carnegie Mellon all provided testimony before the Senate Commerce, Science and Transportation Committee. Their testimony is being shared in installments in Scientific American. Science and Scientific American  reach a large audience of those presumably ’€œin the choir’€. Their words may convince more members of the choir to speak out, given what is at stake right now. We need more voices from the public.

Highlighting public sentiment is ’€” as it should be ’€” a particularly effective, and affecting, tool in advocacy.  New data from the Personalized Medicine Coalition (PMC) show that over two-thirds of Americans understand the value of the concept of personalized medicine, even if they remain largely unfamiliar with the term.  Further, large percentages want to learn more, especially from their physician.  The PMC data comports well with opinion polls Research!America has commissioned, indicating strong trust in physicians to recommend treatment, including clinical trials, but only 22% of the general public saying a health care provider has ever talked to them about medical research.  There is more work ahead for all of us in order to give personalized medicine every chance to succeed!

Last week’€™s tragedy in Ukraine brought with it a terrible loss for the HIV/AIDS community and all of us working for research and for health. Several leading researchers, policy experts, and advocates, including Dr. Joep Lange, were on board Malaysia Airlines Flight 17 on their way to the International AIDS Conference in Melbourne, Australia. Our deepest sympathies are with the families and loved ones of those lost and with the AIDS community at large. Our fact sheet this week highlights the story of Maria Davis. Her story is a testament to the profound impact of HIV/AIDS research and the resulting progress in innovative treatments. Like those we have profiled before her, Maria is an advocate for research to prevent others from facing this destructive virus.

Getting the message out about the benefits and beneficiaries of research is crucial to success in raising the profile of medical and health research, inspiring new advocates and gaining congressional champions. More and more stakeholders are using our fact sheets to do this, (I invite you to do likewise!), and more and more are joining our voter education initiative. If you haven’€™t already, please share Ask Your Candidates! with five of your friends and family. Encourage them to share what medical progress means to them and to ask if their candidates care. Our momentum is strong, with new statements from candidates coming in almost daily.  Help us help research by joining in!


Mary Woolley

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The capabilities are enormous, a little bit of research can pay off quite a bit in the long run.
Paul D’ Addario, retinitis pigmentosa patient