Category Archives: Mary Woolley

A Weekly Advocacy Message from Mary Woolley: Many ways and many means

Today, the House Ways and Means Committee considered legislation (HR 880) to make the R&D tax credit permanent. A simplified, permanent R&D tax credit would amplify the credit’s proven positive impact on the pace of innovation and the strength of our economy. Read our statement submitted for the record here. We know from recent polling that Americans value the R&D tax credit, even if the federal government loses some revenue annually. This and more poll data will be highlighted in our 2015 Poll Data Summary next week, so keep an eye out for this timely read!

Tax reform is one component of the policy climate in which R&D flourishes…or doesn’t. Dr. Mark McClellan, Research!America Board member and Director of the Health Care Innovation and Value Initiative at Brookings, has co-authored two relevant articles in the February issue of Health Affairs: one that looks at ways to bolster the inadequate pipeline of high priority antibiotics as resistant strains of infectious illness proliferate; and a second article that discusses approaches to assessing the “innovativeness” of medical advances. The significance of the former is self-evident. The significance of the latter is multi-faceted, but one important reason to gauge “innovativeness” is to help answer the value question central to reimbursement decisions and other policies. There is no easy way to assign the “right” value to products that could have broad-scale, tangible and intangible, short- and long-term impact on our health, wellbeing and productivity, the economy, federal, state and local budgets, national security, and more. This is an important undertaking, since if we don’t understand exactly where medical progress falls among our national and individual priorities, we are bound to under- or over-incentivize it. And that’s costly on many, many levels. Both of the studies Mark contributed to are well worth the read. Continue reading →

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A Weekly Advocacy Message from Mary Woolley: Tsunami of attention to research in Washington!

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 cures@mail.house.gov. Continue reading →

Statement by Research!America President and CEO Mary Woolley on 21st Century Cures Initiative Discussion Draft

The release of the 21st Century Cures Initiative discussion draft is a major bipartisan accomplishment that represents a truly remarkable diversity of innovative ideas to speed the delivery of lifesaving treatments to patients – a testament to the extraordinary commitment of Congressman Fred Upton (R-MI), Congresswoman Diana DeGette (D-CO) and their respective staff members. The Initiative could be a game changer for the medical innovation ecosystem with provisions touching on virtually all phases of the research and development pipeline – from basic and applied research, to FDA review, to coverage and access. Among the many beneficial provisions Research!America fought for is a measure to reduce the administrative burden on researchers.  We look forward to working with the 21st Century Cures team to greatly boost our nation’s commitment to groundbreaking research and drug development.

A Weekly Advocacy Message from Mary Woolley: Science and the State of the Union

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 →

A Weekly Advocacy Message from Mary Woolley: Walking the Talk

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 →

A Weekly Advocacy Message from Mary Woolley: Innovation today doesn’t guarantee innovation tomorrow

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.

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: 2015: Pragmatism over politics

Dear Research Advocate:

As America rings in the New Year, many of us will be reflecting on the past and making resolutions for the future. To get a feel for the numerous ways in which NIH, CDC, AHRQ, NSF and FDA contributed to the well-being of Americans and others throughout the world in 2014, click here. I hope lawmakers are taking time now to establish New Year’s resolutions and set priorities for the new Congress, which convenes one week from today. My biggest wish for the new Congress?  Pragmatism over politics. If pragmatism rules, the next Congress will shake off the stultifying complacency that is weighing our nation down and act to reignite U.S. innovation. More here.

One reason pragmatism is so crucial is that it accommodates complexity. It would be terrific if the benefits of medical research and innovation could be catalogued like books in the library, but as Norm Augustine explains in The Journal of Clinical Investigation, no can do. The quantifiable benefits of research can stretch so far into the future and be so wide-ranging that it is nearly impossible to fully capture them. And not all the benefits are quantifiable. Policymakers are understandably interested in hard data to help predict the return on federal investment, but that doesn’t mean the value of science can’t be meaningfully conveyed to them. Norm’s commentary is an important reminder that as advocates, we should be prepared to defend science against inadequate estimates of its impact. It also speaks to our role in bridging the distance between scientific progress and such human values as compassion, empathy and curiosity. Pragmatic means logical and reasonable, not “monetizable.”  Continue reading →

A Weekly Advocacy Message from Mary Woolley: The end of an era? Let’s hope.

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 →

Statement by Research!America President and CEO Mary Woolley on the Confirmation of U.S. Surgeon General Vivek Murthy

We applaud the confirmation of Dr. Vivek Murthy as U.S. surgeon general, a visionary thinker who is well-equipped to assume the role of America’s doctor. Throughout his career he has demonstrated a strong commitment to improving public health and unwillingness to accept the status quo: invaluable traits for such challenges as combating Ebola, the obesity epidemic, tobacco-related disease and other complex health issues that confront our nation. His determination to hit the ground running to address health disparities and reduce the stigma of mental health, with a clear understanding of the role of science and innovation in improving health outcomes, is also critically important to advancing public health. We look forward to working with Dr. Murthy to alleviate health threats that impact the health and well-being of all Americans.

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A Weekly Advocacy Message from Mary Woolley: “Congress: Strong letter follows… “

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 →

Statement by Research!America President and CEO Mary Woolley on FY15 Cromnibus Spending Bill

The tiny increases included in the “Cromnibus” bill for the National Institutes of Health (NIH) and our nation’s other health research agencies are just that. The underwhelming support for the NIH, the Centers for Disease Control and Prevention, the National Science Foundation and the Food and Drug Administration following years of stagnant funding and budget cuts begs the question – how low can we go, given health threats the likes of which stand to bankrupt the nation?  And the decision to flat-fund the Agency for Healthcare Research and Quality does not provide what it takes to reduce the much-complained of inefficiencies in our health care system. The pain and economic drain of one disease alone – Alzheimer’s – is not going to be effectively confronted without stronger investments in research. Every American who wants to see our nation overcome health threats, create jobs and shore up our economy for sustained prosperity must make it clear to the next Congress that it can and must do more, making research and innovation a strategic national priority.

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A Weekly Advocacy Message from Mary Woolley: This just in: Congress busy meeting long-expired deadlines

Dear Research Advocate:

Congress is working to reach agreement to fund the government for FY15. Recall that the federal fiscal year 2015 began on Oct. 1, but that deadline was not met. Instead, a continuing resolution (CR) was enacted to keep the government from shutting down. Missed deadlines and CRs have now been the pattern of many years’ standing, despite rhetoric about the importance of a “return to regular order.” Instead of regular order we have “kick the can down the road,” again and again.

It seems increasingly likely that Congress’ current appropriations negotiations will produce a hybrid omnibus and CR (a “CRomnibus” for fans of linguistic portmanteau!) which includes all the spending bills for federal funding except those that relate to immigration. (Those accounts will be funded solely on a short term basis in order to afford the new 114th Congress an opportunity to re-evaluate immigration-related funding early next year.) Neither an extension of the full CR nor a CRomnibus will improve the dismal status quo for science funding. Please urge your Member of Congress to pass full appropriations legislation for FY15, rather than another standing-in-place CR, by clicking here. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Time for Thanks (and) Giving

Dear Research Advocate:

Mark your calendar for two important days next week: First, next Monday, Dec. 1, is World AIDS Day. Check out our updated fact sheet, which provides a snapshot of HIV/AIDS and the transformative impact of HIV/AIDS research.  I especially hope that you will take the time to read the profile of Maria Davis, an individual living with HIV who works to help others with, or at risk of contracting, the disease.

When I think of what I’m thankful for, people like Maria are high on my list.  Which leads me to another reason to express gratitude, this time to the many organizations and individuals who participated in Public Health Thank You Day (PHTYD) on Nov. 24.  Research!America established this day of thanks to commemorate individuals like Maria whose profession or avocation is in the public health arena.  Participation this year was truly remarkable, with more than 750 tweets about #PHTYD (including a tweet from the Acting U.S. Surgeon General!) that reached over 1.7 million Twitter users.

But back to the future: the second key date is Giving Tuesday (Tuesday, Dec. 2). This day, shared on social media using the hashtag #GivingTuesday, serves as a national reminder to make charitable donations to the causes you value.  I hope you will consider making a contribution to Research!America and asking your networks to do the same.  Thanks to the generosity of an anonymous donor, the contributions you make in December will be matched one for one, up to $15,000.

Why donate to Research!America? Because every single minute of every single day, Americans are losing loved ones to deadly and disabling diseases that should be part of our past, not our future.  If our nation rallies behind U.S. research & development instead of neglecting it, lethal threats like Alzheimer’s, cancer, multiple sclerosis, post traumatic stress disorder and muscular dystrophy don’t stand a chance.  By engaging the public, partnering with the R&D community, and making enough noise to get the attention of the White House and Congress, we can speed medical progress and save lives. Click here for a testimonial that truly puts this cause into perspective.  And please don’t hesitate to stop by our website: www.researchamerica.org or contact Carol Kennedy at ckennedy@researchamerica.org or 703-739-2577 for more information on our work.

I hope you’re able to spend a few well-deserved days off this week with loved ones. A Happy Thanksgiving to you and yours,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: Leading with bipartisanship; energized by inspiring stories

Dear Research Advocate:

The goal of the 21st Century Cures Initiative, launched last May by House Energy and Commerce Chairman Fred Upton (R-MI-06) and Ranking Member of the Oversight and Investigations Subcommittee Diana DeGette (D-CO-01), is passage of legislation in 2015 that will eliminate obstacles to faster medical progress. (Representatives Upton and DeGette spoke to a packed audience at FasterCures “Partnering for Cures” meeting in New York on Monday, explaining their goals. Check this out, being sure to listen to the personal story of determination told by Sonia Vallabh; she and her husband have changed their careers to help find a cure for fatal familial insomnia.)

It is exciting to see, for the first time in years, a bipartisan health-related effort gathering strength and support. All of us, whether we are patients or advocates or both, stand to benefit. Research!America has been working with 21st Century Cures to promote strategies that will help speed progress at every stage of the research and development continuum. The most recent example is urging Representatives Upton and DeGette to incorporate Congressman Larry Bucshon’s Research and Development Efficiency Act in their planned legislation. H.R. 5056 would streamline the unjustifiably onerous layers of regulation imposed on federally funded research, freeing up dollars and time to allow research to move faster. Continue reading →