advocacy

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: 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, Just as attention was shifting to the FY18 budget year, we are hearing that a year-long continuing resolution is not a forgone conclusion for FY17. We understand that the pending FY17 omnibus package includes a $2 billion increase for NIH as well as increases for CDC, NSF and FDA (unfortunately not AHRQ). This is a tight window of opportunity -- members of Congress must hear from you now in support of passing an FY17 omnibus bill. As for FY18, as I noted last week, the President’s budget blueprint proposed deep cuts to NIH and our other research agencies. Since then, the high volume of bipartisan cries of outrage may signal better funding outcomes in Congress,...
“We are on the cusp of a major breakthrough in medical progress, this is not a time to let up, it’s a time to redouble our efforts,” said Joe Biden , 47th Vice President of the United States, in his remarks at Research!America’s 21st Advocacy Awards Dinner on March 15. “We can make sure many more chronic diseases don’t cost you your life, but only if we break down barriers. I see the day a patient is given the right therapy the first time when they are diagnosed. I see the day when prevention is more effective, and where care is personalized and more effective with less side effects.” Former Vice President Biden received the Gordon and Llura Gund Leadership Award for his commitment to...
Dear Research Advocate, Wow- yesterday was a whirlwind of activity! Despite the snow on Tuesday, Research!America’s Annual Meeting of Members and Advocacy Awards Dinner were both well-attended and a roaring success! Thanks to all of you who joined us. The archived link of the annual meeting can be found here and here are photos of the awards dinner. More to come on the day’s events, but business first: the president’s “skinny budget” was released this morning. The proposed budget (emphasis on “proposed!”) cuts $15.1B from HHS, $5.8 billion of that from NIH alone. It eliminates the Fogarty Center at NIH, and AHRQ would be subsumed into the Institutes, a mistake on the face of it that is...

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You can change the image of things to come. But you can’t do it sitting on your hands … The science community should reach out to Congress and build bridges.
The Honorable John E. Porter