Category Archives: Mary Woolley Weekly Advocacy Messages

A Weekly Advocacy Message from Mary Woolley: Let me tell you a story…

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 →

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 →

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 →

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 →

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 →

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 →

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 →

A Weekly Advocacy Message from Mary Woolley: The 113th Congress and the 114th

Dear Research Advocate:

Post-election analysis continues. Several publications and forums have addressed congressional action on repealing the medical device tax – this is now more about ‘when’ than ‘if’ – and additional tax changes as well. Advocacy will speed the day and make the difference on these issues. In the lead editorial of tomorrow’s issue of Science, AAAS CEO Alan Leshner and I call on the science community to connect to newly elected members of Congress; we point out that ‘out of sight’ means not only ‘out of mind’ but all too soon could mean science and scientists are ‘out of luck’! Information drawn from our AskYourCandidates! voter education initiative can help you understand priorities of those elected; so can the “new members” guide issued by The Hill.  In keeping with the imperative that science not be invisible in Washington, we will be a co-host of an in-person reception for new members next week. It’s critical to be sure science isn’t overlooked in the competition to attract attention to a wide range of issues.

It is equally important to fight for attention in the lame-duck session. Earlier this week, Research!America board member E. Albert Reece, M.D., Ph.D., MBA, co-authored an op-ed in The Hill with Paul B. Rothman, M.D. The authors warned that the nation is at risk of creating a “discovery deficit” if decision makers are not more forward-thinking with policy decisions. We expressed a similar sentiment in a letter sent yesterday to congressional leadership about the importance of passing an omnibus spending bill for the remainder of fiscal year 2015 that increases the nation’s investment in medical, health and other scientific research. That means Congress must do the particularly hard work of negotiating the “Labor-H” bill, which includes funding allocations for NIH, CDC and AHRQ. Join us in the advocacy effort to assure an omnibus in the lame-duck Congress by sending your own letter to your elected officials. Continue reading →

A Weekly Advocacy Message from Mary Woolley: “Hang together or hang separately”

With the exception of the December run-off in Louisiana and final tallies in a few very close contests, we know the basic political landscape for the next two years. The change is greater than many analysts predicted, although it is not a surprise that the House and the Senate will both be Republican-controlled for the first time in eight years. What does this mean for U.S medical progress and scientific discovery generally? According to our experts at Research!America’s post-election briefing hosted by the AAAS this morning, we can expect some highs and lows in both the “lame-duck” and the next appropriations cycle, with the first seven months of the new year being the limited window of opportunity before most attention turns to the presidential election. Guest speaker David Hawkings, CQ Roll Call senior editor, provided a synopsis of exit polling and voter turnout, which reflected the public’s discontent with the White House and Congress, a continued emphasis on economic concerns, and even splits between Republicans and Democrats on just about every other issue, a combination of factors that doesn’t bode well for bipartisanship generally, much less regular order or major policy changes. In a panel moderated by Rebecca Adams of CQ HealthBeat, Research!America Chair John Porter, Vice Chair Mike Castle, board member Kweisi Mfume and Bart Gordon, all distinguished former Members of Congress, offered predictions on how — or indeed whether — the new Congress will assign a high priority to research moving forward. Congressman Gordon lamented the fact that post-election op-eds and news articles about the agendas of both parties do not mention R&D; there is clearly much more work ahead of us.  Continue reading →

A Weekly Advocacy Message from Mary Woolley: Social media for medical and health research

Dear Research Advocate:

If you haven’t already heard, “Throwback Thursday” is a weekly social media activity that celebrates unforgettable moments in our lives. Users of Facebook, Twitter or Instagram draw inspiration from old photos of family and friends or landmark events, and talk about them, accompanied by the hashtag #TBT. Wouldn’t it be great if today’s #TBT includes reflections on the impact of medical and health research on our lives and those of our loved ones — especially today, with the mid-term elections coming right up, with so much at stake for future generations?

Consider how far we’ve come in medicine. This week marks the 100th birthday of Dr. Jonas Salk, who gifted us with a polio vaccine. An article in The Guardian detailing Dr. Salk’s determination to eradicate this debilitating condition gives us plenty to reflect upon. Most people my age lived with the threat of polio and knew people with the disease.  Another “throwback” is the conversion of HIV/AIDS from a death threat to a manageable chronic disease. In the throes of public fears about Ebola, there are echoes of AIDS.  Continue reading →