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Dear Research Advocate: I have given several talks recently on the role each of us has in winning hearts and minds for research, stressing the importance of telling stories and connecting emotionally rather than clobbering people with facts. That said, sometimes facts tell stories, and sometimes neither stories nor facts compel desperately needed change. Such is the case with gun violence. It’s time to dig deeper. On an average Sunday in this country, about 100 people are killed by firearms, two-thirds of them by suicide. Three days ago, 58 people who had gathered to watch music were senselessly gunned down by a single shooter. Our nation mourns this and every gun violence tragedy, but we...
Dear Research Advocate: The annual Golden Goose Awards ceremony was held last evening at the Library of Congress. These awards animate a truth about basic research: it really is what’s on the inside that counts. The 2014 award honored rat massage research . Judged by that top-line description alone, who wouldn’t be skeptical? In fact, this research saves lives and health care dollars...an estimated $4.7 billion a year in the US alone. This year, the Silence of the Frogs demonstrates how the health of frogs proves the interconnectedness of our world and how one seemingly small event can have a global impact. As they gain more and more attention, the Golden Goose Awards help more people,...
Dear Research Advocate: Last Friday, I attended the 2017 Lasker Awards luncheon. The awards program honors the legacy of Mary Lasker, who once crisply noted: “If you think research is expensive, try disease!” I was struck by Lasker Laureate John Schiller’s provocative observation in his acceptance remarks that ensuring the “nurturing stream” of a robust science infrastructure may be more important than celebrating outstanding individual scientists. I take his point and am glad there is room to celebrate both, and it is certainly true to Mary Lasker’s legacy that our community advocates for both -- for the institutions and policies and funding that make science possible, and for the...
Dear Research Advocate: At our 2017 National Health Research Forum last week, three expert panels provided “Straight Talk” about what it means to drive research to achieve a disease-free world; how our country can face-down public health crises like the opioid epidemic; and what we can do to improve the R&D pipeline. The room was filled to capacity, more than 1,300 people across the country tuned in via live-stream, and we even trended on Twitter! We are so grateful to the participants - speakers, panelists, moderators, sponsors and audience - for making this an event that has staying power and consistently seeds new thinking. Check out the recap of the event. As our Forum was in full...
Dear Research Advocate, In a week with lots of mixed signals on health care, we released new survey data that shows a striking increase in public support for empowering patients (and we are all patients!) to participate in clinical trials. A strong majority say joining a clinical trial is as valuable as donating blood. And a new question shows the public would value providers discussing clinical trials as a routine part of health care. These findings come just as NIH’s “All of Us” initiative launches a new grant program to encourage enrollment in the ambitious one million-enrollee clinical research effort. Read more about our survey , and plan to attend our National Health Research Forum in...
Dear Research Advocate, Recently, I joined hundreds of attendees at the Aspen Institute’s annual Spotlight Health program. One recurring theme was the power of data to drive medical progress. David Blumenthal, president of the Commonwealth Fund, called digitized data a “natural resource; a pool that lies under the surface waiting to be extracted, refined and delivered [for better health and health care.]” There was encouragement for more of us to become ‘data donors’ -- when we are healthy as well as when we are ill -- to help speed research and innovation. But significant obstacles to effectively ‘mining’ our data must be overcome. Technology is no longer a formidable one. Data privacy...
Dear Research Advocate, At this week’s American Foundation for Suicide Prevention (AFSP) Advocacy Forum, the participants’ energy and determination was palpable as they prepared for a day of meetings with their respective congressional delegations. It was a privilege to address the forum, but I wasn’t the main event. It was more than a little unusual to see David Axelrod and Karl Rove on the same stage; tragically, both have experienced the loss of a parent to suicide. They spoke from the heart and inspired advocates to do the same, counseling them to make - and keep making - the case for investing in research and prevention. Rove emphasized: “Make sure your member of Congress hears about...
Dear Research Advocate, The news is concerning. President Trump’s proposed FY18 budget , released on Tuesday, fails to embrace national priorities including research and innovation that directly impact health, economic prosperity and national security. Steep cuts for federal research and health agencies run counter to American values and public expectations that research be put to work at the level of scientific opportunity, in order to advance health and quality of life and to drive the economy. The president’s proposed budget cuts $1.7 trillion over 10 years, almost all of it from non-defense discretionary programs. The FY18 budget proposes cuts of $7.2 billion or 21% for NIH; $1.2...
Dear Research Advocate, I’m sure you’ve heard that the House passed an ACA replacement bill today. In addition to the significant implications for health care access, the bill would repeal the medical device tax and, tragically, eliminate the Prevention and Public Health Fund. As written, this bill likely cannot pass the Senate. Beyond that, the only bet I would take when it comes to repeal/replace is that there are no safe bets... On to research funding: After months and months of hard work by Congress and advocates, an FY17 appropriations deal providing a $2 billion increase for NIH and modest increases for NSF and FDA is on track to become law. While the news is not 100% positive (e.g...
Dear Research Advocate, Congress is making progress in reauthorizing the FDA user fee programs, which is good news. According to officials at FDA, if the July 31 deadline for the “UFA” reauthorizations is missed, “reduction in force” (RIF) notices will be sent to one-third of the staff who review medical devices and a full 70% of those who review “small molecule” prescription drugs. The impact would probably be at least that dramatic for CBER, the center that reviews biologics. If the process stalls (or looks likely to), we’ll let you know and provide advocacy options! During his confirmation hearing before the Senate HELP committee yesterday, FDA Commissioner nominee Dr. Scott Gottlieb...

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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