Tag Archives: Congress

Funding research

Letter to the editor by Research!America VP of Communications Suzanne Ffolkes published in The Gainesville Sun.

In reference to the Dec. 28 editorial “Funding innovation,” countless medical breakthroughs would not have been possible without the support of federal funding. It is imperative that research and innovation become a higher national priority for the new Congress.

Bipartisan proposals to advance medical progress — like the 21st Century Cures Initiative that includes provisions to boost federal funding for research, modernize clinical trials and incentivize the development of new drugs and devices, among others — should be given serious consideration. Stagnant funding over the last decade and sequestration have taken a toll on research institutions in Florida and across the country. Continue reading →

A Worthy New Year’s Resolution for the New Congress

Excerpt of an op-ed by Research!America President and CEO Mary Woolley published in the Huffington Post

mary-woolley-webAs the new Congress sets priorities, there are strong indications that the political climate is ripe for a surge in science. Bipartisan support for the 21st Century Cures Initiative, a comprehensive study of roadblocks to medical innovation and development of new disease therapies and treatments, is slated to move forward with draft legislation early next year. The measure is expected to address six areas of reform: integrating patients’ perspectives into the regulatory process, modernizing clinical trials, fostering the future of science, investing in advancing research, incentivizing the development of new drugs and devices for unmet medical needs and supporting digital medicine. Research stakeholders ranging from academia to industry to patient groups are working closely with the architects of this initiative, Chairman Fred Upton (R-Mich.) and Rep. Diana DeGette (D-Colo.), to ensure the measure will remove barriers to getting new treatments and cures to patients more quickly.

There is also bipartisan support to reform tax legislation, a light or heavy lift depending on the tax package. All signs point to a repeal of the medical device tax in the new Congress but the jury is still out on whether the R&D tax credit can be made permanent and ultimately whether Congress is ready to tackle tax and entitlement reform overall. A favorable tax climate and strong investments in research are critical to improving our population’s health, boosting the economy and spurring further private sector innovation. With sustained federal funding at risk in a deficit reduction environment, alternative funding models to augment appropriations should be considered including but not limited to a mandatory trust fund dedicated to steady growth in research.

Read the full op-ed here

Ask Your Candidates! Unveils Ad Campaign

One of the fundamental goals of the Ask Your Candidates! (AYC!) initiative is to ensure that medical progress takes its rightful place among the priorities candidates discuss as they vie for a seat in Congress. To further this and the central, voter education agenda of AYC!, we’ve launched an ad campaign on POLITICO.com.

These ads, which will run through July 27th, have three different frames, each of which poses a question on the topic of medical progress: 1) What will candidates for Congress do to help kids who need cures? 2) What will candidates for Congress do to help the 30 million Americans with a rare disease? 3) What will candidates for Congress do to help families grow old together?

These questions are examples and far from exhaustive. Why do you care about medical progress? Click here to let your candidates know and see if they care, too.

Check out the ads at http://www.politico.com/p/pages/2014-elections and other POLITICO web pages.

AYC politico

Resolved: Research for Health a Higher National Priority in 2014

Dear Research Advocate,

This is the time of year when many of us attempt to translate our successes, defeats, observations and unfulfilled goals into New Year’s resolutions. I have some thoughts about resolutions in the context of advocacy for research to improve health. I welcome your feedback as Research!America continues to fight for funding and a policy environment that propels medical and health progress forward.

1) We will not only push for pro-innovation policy making, we will push for policy making itself. In other words: leadership, bipartisanship and compromise. The recent bipartisan, bicameral budget action in Congress is a small step in the right direction, but it is just the beginning of a long journey. Without a clear vision of the future and a cooperative spirit across parties, across disciplines and across sectors, support for research will continue to stagnate.

2) We will not only fight to end sequestration and dispense with draconian budget caps, we will fight for tax and entitlement reform. Without the latter, some manner of assault on discretionary budget priorities is inevitable.

3) We will fight to ensure that the voices of Americans are heard when it comes to making research and innovation a higher priority. In launching our election-year voter education campaign, we will reach out to the hearts and minds of Americans nationwide, seeking media as well as policy maker and would-be policy maker attention to a topic that is taken too much for granted.

4) We will not lower our expectations. The budget compromise is a good thing, but the most essential thing is making research for health a much higher national priority. Other nations are doing this; why not the U.S.? We must not tiptoe around the truth: Our global leadership and competitiveness in the research arena is slipping away from us; young scientists crucial to future medical progress are leaving the profession (or moving to China); Americans are dying prematurely or living with chronic pain, severe mobility limitations and other profoundly challenging disabilities; and health care costs remain a difficult issue. Investing in an environment that empowers public and private sector funded research is the appropriate countermeasure to these grim realities; why is it being ignored? The most eye-opening report on the impending loss of U.S. global leadership that I have read of late is Michael Specter’s “Letter from Shenzhen” in the current New Yorker; it follows on my “Sputnik moment” LTE in The New York Times almost eerily, although this time it’s not about space science but the genome.

Our work plan for 2014 — the year Research!America marks as our 25th anniversary — is to work in close collaboration with our members and our colleagues in the advocacy community to build and execute strategies around these resolutions. Together, we will work to achieve higher funding for our federal health agencies; smart policies that empower, rather than impede, private sector innovators; and, most importantly, unleash the palpable potential for making unprecedented medical progress. Please join me in kicking off the new year by reaching out to policy makers, especially appropriators working against a tight deadline, with messages of resolve for 2014.

Sincerely,

Mary Woolley

Advocacy Opportunities at 40,000 Feet

By William (Bill) R. Brinkley, Ph.D., TAMEST’s 2012 President

Brinkley 2012 PresidentSometimes you find luck sitting by your side at the most opportune of moments.  For example, what would you do if you suddenly found yourself seated next to a key member of the U.S. Congress on a two and a half hour flight to Washington, D.C.?  Be prepared, it could happen to you!

If you are a frequent traveler like me, you probably prefer to read, daydream or sleep on most flights.  But what would you do if you suddenly recognized that your seat mate was a VIP—say, a key member of the U.S. Senate or House of Representatives?  You might recognize it as a terrific opportunity to put in a good word for particular issues of great importance to you or society.  Say for instance, an increase in funding for biomedical research or pending legislation for another cause that might impact your future and that of your co-workers and colleagues.

This actually happened to me a few years ago as a biomedical researcher and president of the Federation of American Societies for Experimental Biology (FASEB) advocating for a campaign to double the funding of the National Institutes of Health (NIH).   At the time, I was traveling to Washington, D.C. frequently to visit key members of the legislature to encourage support for the “doubling” as it came to be known.  One key member of the House of Representatives, Congressman Tom DeLay was thought to be a hopeless holdout—but a key individual to get on our side.  As the Majority Whip, DeLay earned the nickname “The Hammer” for his enforcement of party discipline in close votes and his reputation for wreaking political vengeance on opponents. After making numerous unsuccessful attempts to get an audience with DeLay, I finally gave up! Continue reading →

Research!America’s President, Mary Woolley, participates in PAN Advocacy panel discussion

Research!America President and CEO Mary Woolley joins James “J.P.” Paluskiewicz, deputy chief of staff to Rep. Michael Burgess, MD (R-TX); Cynthia Rice, vice president for government relations, Juvenile Diabetes Research Foundation; Israel Robledo, Parkinson’s Action Network Texas state director; and Lisa Shulman, MD, professor of neurology, University of Maryland in a panel discussion about the power of research advocacy. The panel, hosted by Parkinson’s Action Network and moderated by PAN CEO and Research!America Board member Amy Comstock Rick, JD, discusses how to be an effective advocate and communicate effectively with congressional staff to achieve your advocacy goal.

When asked what makes a good advocate, Woolley advises that we must clearly articulate our case, listen to the decision makers’ questions and answer them as best we can. We should be authentic and personal in our communications. Woolley also notes in her comments that many people can be advocates; in fact, public opinion polls show that the public expects patients, researchers and clinicians to all participate alongside Congress in shaping policy.

For advocates who can’t make it to Washington, DC, Woolley has practical advice on ways to advocate from home. During the congressional recess, lawmakers and their staff typically schedule meetings in their district offices with constituents and hold town halls. Advocates should try to meet with their representatives when they’re home for the recess, tell their personal stories related to research to local media, and submit letters to the editor in hometown papers to spread the message. Support for medical research is one of many advocacy topics discussed on Capitol Hill; hearing the same message from a home district shows our representatives how important the issue is to their constituents. And don’t underestimate the impact of a single email or phone call; the volume and passion of the advocacy message for medical research matters.

Woolley also talks about the need to remember the long-term goal and that this is “an iterative process.” There will be steps forward as well as apparent failures, but we can learn from everything. And with reduced funding for research under sequestration, it is important that medical research advocates continue to work together to promote research advocacy as a whole — not promote one disease or area of research over another — for the benefit of the entire research community and health of Americans.

Advocates should be aware that there is a Congressional recess this week and next, making this an opportune time to speak with your representatives at home!

Watch the full panel discussion for insight and advice from other panel members.

Join the Rally for Medical Research on April 8, 2013

The Rally for Medical Research will be held on Monday, April 8 at 11:00 a.m. in Washington, DC, on the steps of the Carnegie Library. Join Research!America and more than 100 other organizations to call on our nation’s policymakers to make lifesaving medical research a higher national priority. With the support of researchers, patients and advocates, the Rally for Medical Research is a tremendous opportunity to send a powerful, coordinated message to Capitol Hill.

If you can’t make it to DC for the Rally, you can take specific actions on April 8 such as:

  • Send an email to or call congressional offices,
  • Tweet members of Congress with a message or post on the member’s Facebook page,
  • Write letters to the editor and place op-eds in newspapers across the country before and during the week of April 8, and
  • Gather a group of individuals to schedule a meeting with their members of Congress’ district office.

You can also contact your Congressional representatives and inquire about upcoming town hall events or meetings in your district during the upcoming recess. With passage of yet another continuing resolution, Congress has established funding for the remainder of FY13 without reversing the senseless across-the-board spending cuts known as sequestration. It is vital that we speak out now to advocate for FY14 funding levels that reflect the importance of research and a commitment to federal agencies like NIH, CDC, NSF, AHRQ and FDA.

A Weekly Advocacy Message from Mary Woolley: When “kicking the can down the road” is better than the alternative

Dear Research Advocate,

Medical research advocates are being heard by those urging a halt to across-the-board budget cuts scheduled to go into effect March 1; your voices are being picked up in the media and echoed by decision makers. But as the deadline approaches, no progress has been made, with many Members of Congress insisting that sequestration go forward. As much as we, and the public at large, have railed against Congress when it “kicks the can down the road,” this is a time to call for just that! Delaying sequestration would create the opportunity (of course, not the promise) of a “grand bargain” before the continuing resolution ends March 27. (In order to avoid shutting down the government, Congress must act before that date. It may be another case of kick-the-can, extending funding until the end of the fiscal year on September 30.) What advocates must push for right now is to eliminate sequestration in favor of prioritization and pragmatism. Email your representatives, sign this petition from AAAS, and stop sequestration. When you reach out to your representatives, use our revised fact sheet and make sure to highlight how sequester would impact your priorities. For other examples, see the just-released fact sheet on sequestration from The Society for Women’s Health Research (SWHR) as well as Rep. Rosa DeLauro’s report.

The House subcommittee that sets funding levels for NIH, CDC and AHRQ wants to hear from you! On March 13, the Labor, Health and Human Services, and Education Subcommittee is holding a public witness hearing. Requests to testify are due by Monday, February 25. This is an excellent opportunity to make your voice heard loud and clear on Capitol Hill. (Members of Research!America, let us know if we can help draft a request letter!)

The New York Times reported Monday that the White House is planning to launch a decade-long project led by the NIH to unravel the core functions of the brain. NIH Director Dr. Francis Collins spoke about the Brain Activity Map on PBS’s Newshour last evening. Scientists are hoping that the project will provide $300 million in funding per year for a decade or more, with the end goal of understanding what goes wrong in the brain and how this leads to some of the most insidious and expensive diseases plaguing Americans and the world. The price tag is daunting, and it will be important to ensure this project doesn’t supplant other critical research, but there is no doubt that cracking the code to the numerous diseases of the brain would be a breathtaking advance in modern medicine.

Speaking of spectacular research, the richest research prize ever has been announced. The winners will receive a prize of $3 million each in recognition of their high impact research. This headline-grabbing announcement helps put faces on science and remind the country of its value, perhaps inspiring young Americans to pursue a career in research. But awards are not enough to stop the onslaught of growing public health threats like Alzheimer’s and other diseases, especially when many policy makers are prepared to allow sequestration to occur. We need to reinvest in our innovative capacity, not cut it off at a time of immense opportunity for health breakthroughs and research-driven economic growth.

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: SOTU and – now what??

Dear Research Advocate,

Setting a breathtaking goal for Congress and the nation, the president called for returning our nation to levels of R&D investment not seen since the height of the space race in his State of the Union address Tuesday evening. He spoke of the potential to defeat Alzheimer’s and to assure an “AIDS-free generation”; and he used the human genome project to illustrate the economic as well as human return on taxpayer investment in research. We were thrilled that the president listed medical research among the nation’s top priorities – along with defense, education and energy – right at the beginning of his speech, when he described the devastating damage that sequestration would do to the things the nation values most. This is, I think, an indication that the hard work of the research advocacy community in driving our research-as-a-priority message is paying off, just as we saw in media coverage of the Save Research advocacy campaign we launched after the election with many of our partners in advocacy. Our voices are being heard! It is time to thank the president, and it’s also time to urge Congress to take action. We must strongly advocate avoiding any proposal that threatens U.S. biomedical innovation, public or private sector-driven. See highlights of the science portions of the president’s speech and our press statement.

Speaking, as the president did, of Alzheimer’s, did you know that the annual cost of Alzheimer’s is $200 billion? By 2050, that number is expected to rocket to $1 trillion! To address the looming threat of across-the-board funding cuts, USAgainstAlzheimers has launched a major advocacy push, sending thousands of letters to Congress, leading a sign-on letter of researchers, and running a full-page ad in Roll Call.

As pointed out by columnist Robert McCartney in The Washington Post, television and radio this morning, biomedical research will be hurt by sequestration as much as defense, right here in the National Capital Area. He quoted NIH Director Dr. Francis Collins extensively and also cited Children’s National Medical Center’s Dr. Eric Hoffman, whose important work on muscular dystrophy has stalled as NIH has held back funding until decisions are made by Congress. Meanwhile, patients are waiting. The idea that Dr. Hoffman’s work – and all of medical research, as well as education, energy and defense and much more – is considered “discretionary” is more than revealing, it is unacceptable to Americans.

Fighting to avoid sequestration, the defense and non-defense communities held a joint event this week to highlight the dangers posed by sequestration, as reported in CQ Roll Call. Leaders from the aerospace industry along with members of the university, health, and science community released new estimates demonstrating that sequestration could rob the American economy of 2 million jobs, causing another recession. Also bringing the message home, Sen. Ben Cardin (D-MD) held a Q&A session with federal workers at the NIH, saying that sequestration would lead to the loss of 100,000 jobs, considering both Bethesda-based NIH employees and businesses that work with them.

Have you brought the message home, so that your representative and senators are hearing it and will act? We can help – contact your representatives and email our science policy director, Max G. Bronstein, to learn about other ways boost your engagement. Only 15 days until the March 1st sequestration deadline.

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: Congress is back and there is lots to talk about

Dear Research Advocate,

Congress is back in Washington but still in campaign mode, making its decisions with the election very much in mind. A 6-month continuing resolution (C.R.) is expected to pass momentarily. The C.R. would put off appropriations decision-making until the new Congress has gotten under way, flat-funding the government through March of next year at fiscal 2012 levels. The atmosphere of fiscal uncertainty for the agencies that fund research, and everyone seeking that funding, is in fact demoralizing in the extreme. Compounding the problem is that the C.R. does nothing to address the looming problem of sequestration, which is scheduled to take effect on January 2, 2013. The administration is slated to release a report tomorrow detailing how the sequestration cuts would be implemented at the department and agency level; it is unlikely to single out research and innovation for special protection. Thus it is more important than ever that our stakeholder community unite in a call to stop sequestration. We encourage you to join us and other members of the United for Medical Research (UMR) coalition on September 20 in a press conference at the National Press Club at 9:30 a.m. Please RSVP to sbauer@gpgdc.com.

Last week, a timely op-ed by Michael Milken in the The Wall Street Journal highlighted the wondrous medical advances and economic prosperity that have been made possible through investments in research. The op-ed coincided with the Milken-sponsored Celebration of Science, a weekend-long series of discussions and other events shining a spotlight on the multifaceted contributions of science to the well-being of Americans and populations throughout the world. In the course of the proceedings, both Senate Majority Leader Harry Reid (D-NV) and House Majority Leader Eric Cantor (R-VA) spoke forcefully about the high priority the nation must place on medical research.

On Tuesday this week, the Albert and Mary Lasker Foundation announced the recipients of the prestigious Lasker Awards – often referred to as the ‘American Nobels’ – which will be presented in New York City later this month. The accomplishments of these awardees exemplify the power of research to unlock knowledge that is of invaluable benefit to society. Mary Lasker, a founder of Research!America, lives on with her hard-hitting message: “If you think research is expensive, try disease!” For timely information on the costs of disease as well as the value and promise of research, see our fact sheets. Use them in your advocacy!

Three other media pieces this week were timed for Congress’ return. Our Your Candidates-Your Health ad is running in Politico now. Use it to leverage your request to candidates to tell us all what they will do to make research a priority. A Washington Post op-ed co-authored by Rep. Jim Cooper (D-TN) and Research!America board member and AAAS Executive Director Dr. Alan Leshner fights back against kneejerk reactions to research based on the name of the project and/or the misconception that science is a mechanical process rather than an iterative, dynamic one. The American Association for the Advancement of Science (AAAS) and others have come together to recognize outstanding researchers whose contributions belie their detractors with the first Golden Goose Award ceremony.

With her letter in the The Wall Street Journal, Ellen Sigal, chairman and founder of Friends of Cancer Research and a Research!America Board member, emphasizes that the views and values of patients must be taken into account when FDA makes the risk vs. benefit calculations that factor so importantly in drug approval decisions. She points out that “risk” is in the eye of the beholder when a new drug is the last and best hope for a terminally ill patient. It is a welcome development that more patients and patient groups are stepping up to take their rightful place in the research process, ultimately driving it across the finish line faster. Patient engagement with Congress has always been high impact; now we need it to influence candidates to make medical progress a top national priority.

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: Mars today, a cure for cancer tomorrow?

Dear Research Advocate,

American achievement continues to astound. This week we watched NASA’s Jet Propulsion Laboratory send one of the most advanced space exploration vehicles ever constructed to a planet hundreds of millions of miles away from Earth and elegantly deliver it to the planet’s surface. Mars today, why not a cure for our nation’s deadliest diseases tomorrow? As advocates, we cannot take no for answer when it comes to assuring we have the resources, policies and determination we need to defeat disease and disability. Why should we be reluctant to demand that this be a national priority? As Margaret Mead once said, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”

Meanwhile, astounding avoidance of decision-making in D.C. The issues aren’t going away, however. In response to attention driven mostly by the defense community, reporters are picking up the sequestration story, leading the public and policy makers to listen too. On Tuesday, President Obama signed into law the Sequestration Transparency Act of 2012, requiring the president to outline how the sequester would be applied across the federal government. By mid-September, we will have a better sense of the specific impact of these across-the-board cuts on federal agencies and research for health. There is little reason to think that research will be exempt from sequestration. So it is dangerous to be either complacent (“sequestration won’t happen”) or discouraged (“we can’t make any difference on this”). I’ve heard both arguments in the past week from members of Research!America; how can it be that there is such a sense of futility and frustration in our community? Consider that Margaret Mead maxim again and reach out to your elected officials with this message: We need cures, not cuts.

Yes we need cures, and we need prevention, too. This is made clear in a letter to the editor published in The Washington Post by Karl Moeller, the executive director of the Campaign for Public Health Foundation. The letter is in response to the recent op-ed about the need for additional research to prevent gun-related injuries, research that CDC has been prohibited from doing. As advocates, we must remind Congress that micromanagement of research, at any level, is a denial of progress.

Denial of the importance of research, is unfortunately, happening all too often. This week, we distributed a press release highlighting an excuse we’ve heard from some candidates about their failure to complete our voter education survey: “I don’t have time” to respond. Patients – indeed all of us – should take exception to that excuse. We must insist that they share their views on research. Patients can’t and won’t settle for less than making research for health a priority. Patient voices can be heard in a compelling new video about why research for health matters. My thanks to our Your Candidates – Your Health partners at the American Heart Association for producing this video montage of heart and stroke survivors talking about the value of research. It is already up on our website. Please take a moment to watch the video and share with your networks. Then create your own, and send it our way!

Sincerely,

Mary Woolley