Tag Archives: National Health Research Forum

A Weekly Advocacy Message from Mary Woolley: Happenings in and out of Washington

Dear Research Advocate:

I am writing a day early this week since all of us at Research!America will be engaged in our programs tomorrow. If you haven’t registered for the National Health Research Forum, there is still time to join us! More details here.

Congress is back in town. The House will soon consider a simple, short-term continuing resolution (CR) to fund the government through early December. (Nobody wants a repeat of last year’s government shutdown at the beginning of the new fiscal year, October 1.) To offset funding requested by the Administration to help meet the Ebola crisis, as well as to adjust for certain other “anomalies,” the CR bill includes a 0.0556% across-the-board spending cut. There may be modest negotiations, but this or a very similar CR is likely to easily pass both Houses shortly. After the election, it will be important to vocally support the efforts of Appropriations Committee Chairs Mikulski (D-Md.) and Rogers (R-Ky.-05) as they seek to complete the FY15 appropriations process with omnibus legislation before the 113th Congress adjourns in December. More on this in future letters. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Coming Soon: Straight Talk

Dear Research Advocate:

Just when you thought that there is no good news coming from Washington, it looks as though we have a new congressional champion for research. Senator Cory Booker (D-NJ) penned a most welcome op-ed in the Asbury Park Press this week. We trust this is just one way he works to convince his constituents and his fellow lawmakers of the high priority the nation should be assigning to research. Championing research can be a heavy lift, since it’s no secret that some policymakers don’t see why government should have any role in R&D. A recent article in Forbes pushes back. As part of the BRAIN Initiative, the Defense Advanced Research Projects Agency (DARPA) is researching a potential breakthrough in healing. It’s a long-shot, but DARPA is known for supporting long shots that have made major contributions to our lives. If the featured research proves successful, it will revolutionize the ability to help wounded warriors – and all of us – heal. It will easily pay for itself many times over. (Just as the GPS – a long-shot, expensive product of federally-funded research – revolutionized our national defense capabilities and has paid for itself over and over again in commercial application. That’s what federally funded research does. It goes where the free market can’t and mines new territory in science and technology. The private sector takes it from there.) The House and Senate defense appropriations bills would both cut funding for DOD-funded R&D. Has shooting ourselves in the foot become a policymaking imperative? Continue reading →

A Weekly Advocacy Message from Mary Woolley: Can we put a dent in the costly toll of suicide?

Dear Research Advocate: 
 
The loss of American Icon Robin Williams has riveted national attention on suicide, one of the 10 most common causes of death in the United States. Today, we are releasing our updated fact sheet on suicide that you can use when meeting with lawmakers and educating others about the impact research can have. Efforts to prevent suicide rightly draw on research findings. But progress has been painfully slow, stymied by serious gaps – partly due to severely limited funding – in the basic research base that precedes private sector development, and stymied by the equivalent of handcuffs placed on social science research.

The notion promulgated by some in the Congress that social sciences research doesn’t add enough value to merit federal funding is not just unfounded, it’s holding us back. Social sciences research saves lives. Case in point: behavioral research guided the development of a suicide intervention that was pilot tested in schools in Georgia and Connecticut and resulted in a 40% reduction in attempted suicides. It has since been implemented in schools across the country. This is just one example of social sciences research at work.

Research moves faster when patient advocates engage. This is the history of the nation’s commitment to defeating polio, to ramping up HIV/AIDS research, to prioritizing breast cancer research and women’s health research overall. Writing in the New Yorker last month, Seth Mnookin described the impact that “dedicated … well-informed families” can have in pushing progress. In his responsive letter to the editor, Peter L. Saltonstall, CEO of the National Organization for Rare Disorders, focused on the use of social media by patient groups to establish global registries, taking full advantage of abilities we didn’t have just a few years ago, and in so doing, saving lives. But there is another message here. The research community must work more closely with patient advocates in order to drive medical innovation. As one of the researchers in the Mnookin article said, “Gone are the days when we could just say, ‘We’re a cloistered community of researchers, and we alone know how to do this.’” Continue reading →

A Weekly Advocacy Message from Mary Woolley: No recess for advocates!

Dear Research Advocate:

As I write, most members of Congress are on the way home for August recess. As anticipated, no further action has been taken on the appropriations front – or much else, for that matter. In terms of issues we care about: no movement on tax reform, which means no much-needed enhancement of the research and development tax credit; no repeal of the medical device tax; and no final passage of Fiscal Year 2015 appropriations bills.  In upcoming letters I will talk in more detail about Capitol Hill-focused advocacy strategies through the election and beyond.

In the absence of legislative action, some attention – in a bipartisan manner – is being given to research for health. In previous letters, I’ve talked about an effort spearheaded by House Energy and Commerce Chairman Fred Upton (R-MI-06) and Ranking Member Diana Degette (D-CO-01) called the 21st Century Cures Initiative that will remain active over the recess. Public input is being sought as central to this initiative. The truly engaged and whip-smart congressional staff coordinating this initiative have indicated that they would welcome your thoughts at any time. They are particularly interested in the National Institutes of Health, the Food and Drug Administration and public-private partnerships. If you believe the key to faster medical progress is increased funding, tell them. If you feel that bottlenecks in the clinical trials process are the priority concern, tell them. This is not only an opportunity to seed positive change; it is an opportunity to elevate the priority of medical progress going forward. When you think about it, the volume of comments is nearly as important as their content. Issues with an army behind them get attention. To submit comments, e-mail cures@mail.house.gov. Continue reading →

Sound Public Policy + World Class Science = Healthy Innovation Ecosystem

By Bart Peterson, JD, senior vice president of corporate affairs and communications at Lilly

Bart PetersonI recently had a wonderful opportunity to address the National Health Research Forum, hosted by Research!America. As you may know, this important forum brings together leaders from the public and private sectors to discuss pressing matters that affect the future of research and development in our country.

As I mentioned in my speech, from 2000-2007 I had the honor of serving as the mayor of Indianapolis.  Although Indianapolis has a solid economic base, I often wondered how other cities in my home state would fare in the headwinds of diverse economic challenges. Indiana is dotted with cities of fewer than 100,000 people all built up around manufacturing – cities that lost their manufacturing facilities to a shifting economy and an increasingly competitive global marketplace. What was going to be the future of these cities? Would they be on the map 50 years from now?

But that said, there were some Indiana cities of the same size that I never worried about at all. I didn’t worry about South Bend or West Lafayette or Bloomington. These are cities of 100,000 people or less, but they are home to the University of Notre Dame, Purdue University, and Indiana University. Continue reading →

Highlights of the 2013 National Health Research Forum

Research!America’s National Health Research Forum — held September 12 at the Newseum’s Knight Conference Center in Washington, DC — examined the current and future state of research to improve health. This year’s theme was “Straight Talk about the Future of Medical and Health Research.” Three expert panels delved into different aspects of the research ecosystem.

_DSC5052Reseach Amercia NatHealth Research Forum 9.12.13 BarrettResearch!America’s president and CEO, Mary Woolley, and chair, The Honorable John Edward Porter, opened the program. Porter introduced Bart Peterson, JD, senior vice president of corporate affairs and communications at Lilly who delivered a brief keynote speech.

“We developed an innovation ecosystem, and that ecosystem requires sound public policy. From the private sector perspective, that includes solid intellectual property protection; a fair, rigorous, transparent regulatory system; a market system of health care delivery and pricing that offers choice for patients and health care providers,” Peterson said. “But the public sector has a role far beyond just producing sound public policy … Public funding for research, which is so threatened today, is absolutely critical to the future and we care about that as much from the private sector perspective as anybody else does.”

R!A 2013 Forum

The first panel, focusing on biomedical research and development, was moderated by journalist Eleanor Clift of Newsweek and the Daily Beast and featured John Crowley, president and CEO of Amicus Therapeutics and a patient advocate; William Hait, MD, PhD, global head of R&D at Janssen Pharmaceuticals; Margaret Hamburg, MD, commissioner of the Food and Drug Administration (FDA); and Peterson. The discussion centered on innovation within the pharmaceutical industry and the relationship between companies and regulators. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Special early short edition this week

Dear Research Advocate:

I am sending out my letter early this week so that you can plan now, if you are not able to be with us in person tomorrow in Washington, to join us electronically for our National Health Research Forum. With the theme of “Straight Talk,” our first-rate panelists will speak candidly about where our medical and health ecosystem is headed today — what the possibilities are, if we give research and innovation every chance to succeed — and what the policy and funding challenges are as we go forward. We thank Lilly, our lead sponsor; all our additional sponsors; and WebMD for live-streaming the event on their website at www.webmd.com/researchforum.

On the funding front, Congress may soon consider a simple, short-term continuing resolution (CR) to fund the government at levels slightly lower than the current FY13 level (that means including the sequestration hit), lasting until mid-December. There are no riders or mandates that affect NIH — or any other agency for that matter. In the end, it’s likely that this CR will pass both chambers. But the fight to end sequestration continues, and an action opportunity may present itself with discussions spurred by the debt limit. We are planning our advocacy accordingly and will keep you in the loop.

Finally, I’d like to extend warm congratulations to the 2013 Albert and Mary Lasker Foundation award winners. These impressive scientists and philanthropists have worked tirelessly to advance basic and clinical medical research and ensure that research reaches those in need. These prestigious awards are well-deserved.

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: Finally, a breakthrough in classification of R&D

Dear Research Advocate:

The Bureau of Economic Analysis has reclassified research and development costs from an “expense” to an “investment” when calculating GDP. We think Members of Congress should do the same. Common sense tells us R&D is an investment, not an expense; in general conversation we all talk about R&D as an investment, but it isn’t accounted for that way on the federal books. The arguments we’ve been making are now further bolstered by the BEA’s decision. Spread the word!

One hundred and sixty five university presidents and chancellors, representing all 50 states, have called on the president and Congress to reverse the pending “innovation deficit” in an open letter published last week in Politico before the August recess. With more than half of the economic growth in the U.S. since WWII attributable to innovation — largely due to the nation’s commitment to higher education and federally supported research — our society and our economy are at risk if we continue on today’s trajectory.

These are arguments to use as we work to keep research and innovation in the conversation during the August recess. We have launched a reprise of our social media campaign using the hashtag #curesnotcuts. Please take part, so that policy makers, at home in their districts this month, get the message loud and clear that Americans want medical research to be protected from indiscriminate cuts; so they hear that research and innovation require committed, robust investment. Earlier this week, I was on “Radio Smart Talk” on WITF-FM, a Pennsylvania NPR affiliate. During that show I spoke about the damaging effect of the sequester and fielded questions from listeners. When making your case, you might find it useful to pull from those radio soundbites or from the points we contributed to an editorial that appeared in the The (Newark, NJ) Star-Ledger. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Dispelling a Few Myths

Dear Research Advocate:

Myth #1: Congress doesn’t pay attention during the August recess. Not true! Many town hall meetings are planned. Since the debt ceiling and appropriations negotiations are coming up in September, the August recess is actually a very important time for advocacy. Use this month to drive the point home that medical research should not be subjected to budget cuts by attending a town hall meeting, meeting with district staff and participating in our social media campaign, #curesnotcuts. Click here for sample messages, or draw from a recent op-ed penned by The Honorable John Edward Porter, Research!America chair. The op-ed ran in several McClatchy-Tribune newspapers across the country last weekend. In it, he highlights the dangers that indiscriminate budget cuts pose to our medical and health research ecosystem.

Myth #2: It makes no difference when scientists speak out. On the contrary, one of the most effective strategies for promoting and protecting research is public engagement by scientists. It may seem like a waste of time or an unjustifiable obligation, but if scientists don’t speak up about their work, the funding that allows that work may evaporate. In a recent entry on his website, David Eagleman, a PhD researcher who recently received an award from the Society for Neuroscience, makes the case that the benefits (such as inspiring critical thinkers, stemming the flow of bad information, informing public policy and more) clearly outweigh the cost of time to engage in outreach and advocacy. For those ready to engage, some important points and valuable tips on how to communicate clearly and effectively were highlighted in yesterday’s Nature blog. Research!America Board member and AAAS CEO Alan Leshner is among the experts quoted. Continue reading →

Announcing Research!America’s Inaugural Advocacy Academy

Research!America is pleased to announce an exciting new program to introduce and engage early-career scientists in research advocacy and science policy. The 2013 Research!America Advocacy Academy is a unique opportunity for postdoctoral fellows in the health and biomedical sciences to learn about how to best incorporate advocacy and effective communications into their role as a scientist.

The 2013 class of up to 12 Research!America advocates will participate in a two-day Washington, DC, program from September 11-12, 2013. Participants will learn about the federal budget and appropriations process, tools for effective science communication and outreach as well as how to engage with elected representatives on scientific and research issues. The program includes visiting Capitol Hill to meet with policy makers and congressional staff members, providing participants with a first-hand experience advocating for health research. Rounding out this unique Washington experience, participants will attend Research!America’s National Health Research Forum where top leaders in government, industry, academia and patient organizations engage in moderated conversations on issues of importance to the research ecosystem. Continue reading →