Category Archives: Advocacy Messages
Dear Research Advocate:
Appropriately, it was Jack Valenti, prominent former president of the Motion Pictures Association of America, who recommended to politicians that every speech should include the six words: “let me tell you a story.” Stories have impact in ways reports do not. Eddie Redmayne as Stephen Hawking, a theoretical physicist diagnosed with a form of the motor-neuron disease amyotrophic lateral sclerosis (ALS), in The Theory of Everything, and Julianne Moore as Dr. Alice Howland, a fictional linguistics professor diagnosed with early onset Alzheimer’s, in Still Alice, were Academy Award winners last Sunday evening. These films grappled with devastating diagnoses for the patient and their loved ones, putting a face to the 30,000 Americans living with ALS and the more than 5 million Americans living with Alzheimer’s.
A less high profile but impressively high impact group of advocates for rare disease research traveled to D.C. from around the nation to tell their own – personal and nonfictional – stories about the toll visited on patients and families by a wide range of diseases that also call out for more research. Having spoken with the group early yesterday morning before they fanned out on Capitol Hill, I can attest to how well-rehearsed and determined they were to make their case. I recalled that it is patients and their families who have, historically, so often made the breakthrough difference in advocacy for research, going back to the key role of the March of Dimes in focusing the nation on the imperative of putting research to work to defeat polio, through the paradigm shifters called AIDS activists and women’s health research advocates, and many more. Now is the time for more stories to be told on Capitol Hill, at this moment of opportunity for galvanizing Congress’ increasing interest into action. Continue reading →
Statement by Research!America President and CEO Mary Woolley in Response to President Obama’s FY2016 Budget
We are pleased that the President’s FY16 budget proposal calls for the elimination of sequestration and starts an overdue conversation about better aligning resources for public health and medical progress, given their importance to the American people and to the health of our economy. It is critical that we ramp up initiatives that focus on precision medicine, Alzheimer’s, antimicrobial resistance and other growing health threats, but these investments should supplement, not supplant, the imperative of making up for a decade’s worth of lost ground. We believe that Congress and the White House can, and must, unify behind the vision encapsulated in the bipartisan Accelerating Biomedical Research Act. Medical progress is not just a health imperative, it is a strategic imperative, integral to national security, fiscal stability and economic progress. Leaders on both sides of the aisle clearly appreciate that the time is now to turn ideas into reality. It may be a truism, but where there’s a will, there’s a way. Continue reading →
Statement by Research!America President and CEO Mary Woolley on President Obama’s Precision Medicine Initiative
President Obama’s Precision Medicine Initiative could potentially drive medical and health research into exciting, new territory as we advance efforts to develop the right treatments at the right time for individual patients. A laser-focus approach that takes into account a patient’s genetic profile, environment and lifestyle is critical to treat diseases such as cancer which afflicts millions of Americans. Only about a quarter of Americans believe the U.S. has the best health care system in the world, according to public opinion polling commissioned by Research!America. This initiative could help reverse both the perception and the reality with targeted treatments that will save lives and improve health care delivery.
This initiative is an important development for patients, physicians and researchers who will benefit from a stronger national commitment to precision medicine and for those who may yet take advantage of the new tools and therapies that will result from this effort. And many Americans are ready to support this endeavor. Polls show more than half say they are willing to share their personal health information to advance research and help improve patient care, and a majority believe that elected officials should listen to advice from scientists. This initiative is a major step towards building a stronger public-private partnership to leverage health data and technology to accelerate the discovery and development of tailored treatments for patients. Continue reading →
Dear Research Advocate:
I warn you that today’s letter is long. There is a lot going on; suddenly, lots of people in Congress are staking out leadership roles as champions for research! On Tuesday, the first draft of the much anticipated 21st Century Cures legislation was released. Chairman Fred Upton (R-MI-06) and Congresswoman Diana DeGette (D-CO-01), who will jointly receive Research!America’s 2015 Edwin C. Whitehead Award for Medical Research Advocacy at our Advocacy Awards dinner on Wednesday, March 11 (click here to join us for the event), have been partnering on this effort since last spring. Congresswoman DeGette has not endorsed the current draft, but she has made it clear that she continues to be committed to the process. We are, too. Over the coming weeks, we will be meeting with the 21st Century Cures team and participating in a variety of discussions on the intricacies of the bill.
Among our priorities will be to ensure that basic discovery is not neglected (a house built on sand…), and to make sure that, for the U.S. Food and Drug Administration (FDA) and other agencies – already struggling to fulfill their current responsibilities – if given new “to do” lists, must also be given new resources. We will continue to push for final bipartisan language that effectively boosts the return on medical progress by accelerating discovery, development and delivery. See our statement on the 21st Century Cures release here. And click here to see the Committee’s documents. They have invited suggestions on the draft, and ask that you send your comments to email@example.com. Continue reading →
Dear Research Advocate:
The State of the Union (SOTU) message is the annual opportunity for the President to outline his goals. Read my statement on it here. The SOTU historically provides a platform for the executive and legislative branches to identify commonalities, or sharpen differences. Topics in our sights on which Congress and the Administration can work together should they choose (meaning if their constituents demand it!) include innovation, research and development, and 21st century business success. In his speech and in a more detailed proposal, the President calls for a significant increase in funding for antibiotic discovery, Alzheimer’s research, the BRAIN Initiative and precision medicine. We urge the President and Congress to go further, working together to advance a strategic “moonshot” that re-energizes our national commitment to science, very much including basic science. Basic discovery is truly the foundation for all of our nation’s scientific advances. It’s pretty simple. As Dr. Roger Perlmutter, Executive Vice President at Merck, said this week in The New York Times: “Since we don’t know how the machine [the human body] works, we don’t know what to do when it breaks.”
Investment in basic and clinical research isn’t a “nice to have” proposition; it’s essential, leading as nothing else will, to good news for patients. An op-ed this week from Executive Vice Chancellor for Medical Affairs at the Washington University School of Medicine in St. Louis and Research!America board member Dr. Larry Shapiro discusses the university’s work, funded by the federal government, which has led to advances in early diagnosis of Alzheimer’s before symptoms are perceptible. Continue reading →
Statement by Research!America president and CEO Mary Woolley on President Obama’s State of the Union Speech
In his State of the Union address, President Obama highlighted the important role of research and innovation in growing a more prosperous and healthier nation. We’re excited about the launch of the Precision Medicine Initiative, which comes at a time when the challenge of conquering disease – all along the research spectrum, from discovery to translation to innovation and application – has never been more within our grasp. The inspiring story of William Elder, Jr. a medical school student and cystic fibrosis survivor, shows that science can deliver breakthroughs for patients with cystic fibrosis, cancer, Alzheimer’s and other diseases. The remarkable ability of our nation’s researchers to advance precision medicine to hone targeted treatments to improve individual patient outcomes is a compelling example of what can be accomplished with federal support. We’re getting closer and closer to achieving treatments that save time, save money and save lives because they are right the first time.
We can’t afford to ease up on our commitment to research, to assure we can put a whole range of diseases in the history books. A further reason, noted by the President, is that we need robust funding and policies to ensure we’re not behind the eight ball addressing domestic or global outbreaks like Ebola. Current funding levels for federal health agencies put researchers at an extreme disadvantage in pursuing studies that have the potential to cure disease and improve quality of life, and tax policies have stymied the development of new drugs. Policymakers must pivot from short-sighted thinking to formulating a long-term strategy that will bring new treatments across the finish line and spur growth in quality jobs. We think it’s past time to adopt a national strategy that will assure the U.S. retains its world leadership in science and innovation. A new Blue Ribbon Commission established by Congress to explore how science is perceived by the public will help stimulate a meaningful conversation with Americans about the societal and economic benefits of science. Continue reading →
Dear Research Advocate:
I start this letter by sharing our excitement that Congressman Fred Upton (R-MI-06) and Congresswoman Diana DeGette (D-CO-01) will receive the Edwin C. Whitehead Award for Medical Research Advocacy this year. Their leadership on the 21st Century Cures initiative is just the latest example of their “all-in” commitment to medical progress. The (loose) theme of this week’s letter is “walk the talk”: there are few leaders in Congress who have more consistently or productively adhered to that mantra. Read our press release here.
Our Whitehead winners are shepherding a change in direction for public policy related to medical innovation. Complacency and neglect are out and bold action to bolster resources and achieve time- and cost-saving efficiencies is in. Not a moment too soon: a report authored by Dr. Hamilton Moses et. al. this week in the Journal of the American Medical Association (JAMA) documents the disturbing slowdown in U.S. investment in medical research, made all the more striking in contrast to dramatically increased investment by other nations. The authors emphasize that languishing investments cannot and will not produce the meaningful medical breakthroughs our society is expecting. Continue reading →
By Caleph B. Wilson, Ph.D., a biomedical researcher at the University of Pennsylvania, logistics director of the National Science Policy Group, science communicator and STEM outreach advocate. Follow him on Twitter as @HeyDrWilson.
With the 114th Congress underway, the scientific community is looking forward to sharing new research breakthroughs and advocating for STEM during a series of congressional visits to Capitol Hill. In some instances, scientists and trainees will assist writing congressional briefs and give testimony to House and Senate committees on science, technology and health.
While Congress is considering science policy initiatives, positions and funding, there are a few things in the early-career scientist “wish list” that would make improvements and maintain the United States’ leading position in the scientific enterprise.
Throughout 2014, early-career scientists discussed specific issues in science policy groups, on social media and in articles that need to be addressed. These are some of the highlights of the conversations that have been put in a “Wish List” that hopefully Congress and policymakers will strongly consider.
- National Science Foundation (NSF) and National Institutes of Health (NIH) funding that is predictable and keeps pace with inflation.
In the early 1990s, the NIH budget increased dramatically. However, over the last 10 years the NIH budget has flat-lined and even decreased at times. Unfortunately, the budget has not kept pace with inflation and rising costs of executing experiments. With changes in the economy and the sweeping budget cuts that came in with sequestration, government agencies, institutions and investigators can better plan with predictable budget appropriations that keep pace with scientific opportunity. Continue reading →
We NEED CURES, NOT CUTS.
Sequestration arbitrarily stifles federal investment in national priorities like medical research and innovation, at the expense of America and Americans.
Deficit reduction is important, but there are ways to achieve it that do not set out nation back, threatening our global leadership and shortchanging the health and safety of the American people.
Dear Research Advocate:
Research!America yesterday released our recommendations for the top five science priorities the new Congress should address in its first 100 days: end sequestration, increase funding for our nation’s research agencies, advance the 21st Century Cures Initiative legislation, repeal the medical device tax, and enact a permanent and enhanced R&D tax credit. See the full press release here. Among these priorities, ending sequestration is the steepest uphill climb – but what a difference it would make for the future of health and the nation’s economy! That’s the focus of this editable message to members of Congress. Please weigh in!
Securing meaningful increases in funding for our federal research agencies will take the same kind of leadership and bipartisan commitment that propelled the FY98 – FY03 doubling of the NIH budget. A recent CQ Healthbeat interview with Congressman Tom Cole (R-Okla.), the new chairman of the House Appropriations “Labor-H” Subcommittee, suggests there is reason to hope for just that kind of momentum. During his discussion with CQ Healthbeat reporter Kerry Young, Chairman Cole indicated that he plans to establish an aggressive hearing schedule, with the goal of facilitating the bipartisanship that was long the hallmark of the Appropriations Committee. He said: “If we talk enough, maybe we find some common ground and some unusual alliances and some places where instead of being at one another’s throat, we can actually work together …” Cue research to save lives and combat disability.
Fareed Zakaria writes in the Washington Post that, “federal funding for basic research and technology should be utterly uncontroversial,” and I couldn’t agree more. However, robust federal funding is only a part of the equation. Tax and other policy reform is crucial to the vitality of domestic innovation. In his op-ed, Fareed identifies troubles faced by American start-up companies, with their number trending down alarmingly as they face so many barriers to entry. He notes that yes, American innovation is still a wonder of the world, but it is becoming less and less unique. Innovation today doesn’t guarantee innovation tomorrow. Success in both the public and private sectors relies on updating of creaky national policies to reflect the excitement and potential of 21st century science and technology.
Finally, an issue where change is crucial, but the path to it uncertain: how to prevent the discouragement and flight of still more young would-be super-scientists. Johns Hopkins University president Ronald J. Daniels takes on this issue in the most recent edition of the Proceedings of the National Academy of Sciences (see press release here). As he explains, increased competition for grant funding and fewer faculty jobs could well choke off the pipeline of young scientists needed to maintain our nation’s research capacity. Daniels’ perspective is an important contribution to a profoundly complex issue that cries out for resolution. It is likely to be on the 21st Century Cures agenda and receive considerable attention during the aforementioned Labor-H hearings. It would serve the research community well for advocates to come to consensus on solutions rather than wait for solutions to be imposed without their input.
We have a lot of work cut out for us, stakeholders in science and lawmakers alike. But at the end of the day, we are all working in the public’s interest – a starting point for agreement even when we might seem miles apart.
Today, Research!America urged the 114th Congress to take action on five science priorities in the first 100 days of the legislative session in order to elevate research and innovation on the nation’s agenda:
- Advance the 21st Century Cures Initiative. Spearheaded by Representatives Fred Upton (R-Mich.) and Diana DeGette (D-Colo.),the initiative is a promising step in the right direction, focusing on speeding medical progress from bench-to-bedside by integrating patient perspectives into the regulatory process, modernizing clinical trials, and reducing red tape, among other things.
- Repeal the medical device tax. A provision in the Affordable Care Act, efforts to repeal the medical device tax have garnered bipartisan support as policymakers and industry leaders raise concerns about the tax’s impact on jobs and innovation.
- Enhance and make the R&D tax permanent. The credit, established in 1981, allows companies to deduct certain research expenses, but the short-term extensions have created uncertainty for businesses that rely on long-term planning for research investments.
- Eliminate Sequestration. As part of the 2011 Budget Control Act, sequestration has taken a significant toll on the research ecosystem, forcing institutions to scale back or eliminate important studies and cut jobs. A two-year bipartisan budget deal for FY14 and FY15 reduced the cuts for those years, but the full sequester returns in FY16.
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 →
Excerpt of an op-ed by Research!America President and CEO Mary Woolley published in the Huffington Post.
As 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.
Dear Research Advocate:
I don’t always dwell so much on Congress-related actions (or the lack thereof), but this time it’s essential given all the year-end/Congress-end action. So bear with me; it’s important to the future of health and our nation’s prosperity. The “Cromnibus” narrowly passed Congress and has now been signed into law. As I emphasized in last week’s letter, this bill is too little, too late in a multitude of ways, but it’s better than a shutdown, or a year-long continuing resolution. More to the point is that Congress didn’t do better. Members of Congress can allocate more funding to medical research and science and technology broadly. Congress can alter tax and other public policy to more robustly fuel innovation. Taken together, these actions have historically – and can again – grow our still-struggling economy. Along with our partners, all well-aware of the promise of science and of the very real costs of slowing the science enterprise, we will be working in the new year to change the conversation around research and innovation. More to come on that. Continue reading →
Dear Research Advocate:
So much is troubling our nation – evidenced in protests of recent grand jury decisions and the controversy over release of the Senate’s report on the CIA – that most people probably haven’t noticed or cared that the Congress is delaying and may even abort action on the long overdue funding of the federal fiscal year that began on Oct. 1. People have grown tired of Congress missing self-imposed deadlines, only to say they can only act in the face of those deadlines, and now they are talking of doing it again. And thus we are lulled into thinking it doesn’t matter what the Congress does. But that would be wrong: priority-setting by the Congress plays a major role in determining the economic security and health status of the nation and everyone in it.
Right now, Congress is keeping the nation in limbo, and not just when it comes to funding deadlines. “How low can we go” does seem to be the theme of the appropriations process. If the currently negotiated plan is adopted and signed into law – and that is a big if – the good news is that one-time supplemental funding will be allocated to NIH, CDC and other agencies to work on advancing Ebola-related research and clinical trials. That aside, NIH and CDC would receive razor thin increases compared to FY14, as noted in our statement about the “Cromnibus.” NSF and FDA fare slightly better with increases reaching the level of full percentage points, 2.4 percent and 1.4 percent, respectively. AHRQ is slated to receive a decrease of .08 percent, but, importantly, the agency will at long last be given budget authority, i.e., will not have to rely on passing the hat, so to speak, to other agencies to help fund it. Now Congress must take AHRQ to a higher level of support if we are ever to get our arms around inefficiencies in health care delivery. Continue reading →