Category Archives: Mary Woolley Weekly Advocacy Messages

A Weekly Advocacy Message from Mary Woolley: Talking about science at election time

Dear Research Advocate:

Ebola remains in the news. In the midst of the demoralizing finger pointing that seems to have taken the place of unity of mission that ought to characterize our nation, we are occasionally reminded that science is a problem solver. That’s a useful message to convey if we hope to keep the current politicization from worsening. But more of us have to speak out. Don’t stand on the sidelines when you could make a difference at this important time when people are paying much more attention to research than usual.

With the election only a little over a week away, take the time to ask candidates a question or two. Email or tweet in questions to debates and contact campaigns via social media. You might talk about Ebola, keeping your request in the moment.  But consider, too, that your candidates’ views on investing in medical progress may be influenced by yesterday’s news about the federal deficit.  The deficit is $483 billion, or 2.8 percent of GDP — its lowest level since 2007. Reasons cited include lower unemployment, higher tax revenues and stable government spending. Still, the budget gap forecast by the Congressional Budget Office (CBO) is expected to widen again as an aging population leads to more spending on Social Security and health care. It isn’t surprising that rising health care costs are cited as a force behind projected future deficits.  What is surprising is that our nation doesn’t have a plan to harness research as a means of responsibly reducing health spending. You will hear more from us about advocating for a national plan to address this and other solutions only science can provide.  Continue reading →

A Weekly Advocacy Message from Mary Woolley: Suddenly, preparedness matters again

Dear Research Advocate:

We thought we learned our lesson after 9/11 and anthrax attacks.  After the trauma and after fear swept the nation, we invested substantially in “preparedness.”  But then we drifted into complacency, and began cutting deeply into the kind of preparedness that is less visible than TSA and drone strikes, but, as Ebola is teaching us now, no less valuable. As mentioned in today’s congressional hearing on the subject, the decade-long pattern of cuts to federal health agencies, as well as to funding for hospital and public health preparedness, has now been revealed to have been short-sighted.  (Much of the cutting was carried out over the years as a way to “prioritize” federal spending in the face of today’s presumably more pressing problems, including reducing the federal deficit and debt. If our policymakers were holding true to the financial priority argument, they wouldn’t have short-changed NIH, NSF, FDA and CDC or acted to discourage private sector research and innovation. Medical research to develop treatments that slow the progression and ultimately prevent Alzheimer’s and obesity is the only means we have of preventing an entirely foreseeable explosion in national health spending!  Mary Lasker got to the heart of the matter when she said: “If you think research is expensive, try disease.”)

We expect our elected officials to be preparing on all fronts. There will be more Ebolas. That is scary, but it is inevitable. Maybe the next Ebola will take the form of a virus akin to HIV/AIDs or a major act of bioterrorism or a drug-resistant airborne infection. We are a globalized world facing global health threats, and the federal agencies responsible for preventing and responding to these threats must be supported, not politicized, demonized, or starved.  Nor should we address one problem by neglecting others, funding Ebola by reducing dollars for research crucial to combating other health threats. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Nobel prizes this year and in the future

Dear Research Advocate:

The 2014 Nobel Laureates will be announced next week. I hope you will consider amplifying the news via social media, op-eds and letters to the editor. The Nobel prize is so iconic that it provides an entrée to the broader public, one that can be used to connect the dots between the process of scientific discovery, the power of ingenuity, and the role of science in human progress. And if a winner has been funded by a U.S. science agency or company, all the better from an advocacy perspective!

In the years ahead, will the United States be home to more Nobel Laureates in the sciences, or will those honors go to scientists in countries that place a greater emphasis on research and innovation? This chart compares the R&D commitment of 19 Organisation for Economic Co-operation and Development (OECD) nations, the metric being R&D as a percentage of GDP. The next time you are speaking with a member of Congress or his/her staff, you may want to mention that, in relative terms, Estonia assigns a higher priority to R&D than does the United States. Bravo to Estonia, but do we as a nation truly expect to remain a global powerhouse as we drain our own power source? Continue reading →

A Weekly Advocacy Message from Mary Woolley: Who has a stake in science?

Dear Research Advocate:

A continuing resolution to fund the federal government at just under Fiscal Year 2014 levels – it now includes supplemental funding to help combat the escalating Ebola epidemic – is on its way to the President’s desk, and members of Congress will soon be on their way home. Where does that leave us? At the very least, with something to talk about.

Today in Kentucky at the Research!Louisville program, now in its 19th year of celebrating science and scientists and engaging the broader community, I talked about the way the nation’s decision-makers have failed us all by setting our nation’s innovation engine on idle, dismissing the fundamental importance of research and innovation at the expense of our health, our national security, our fiscal stability, our economic strength, and our global leadership. And they are sending a message to talented young people like those at the University of Louisville that science is a risky career choice. Yet a “can do” attitude is very much alive here. A group of graduate students has organized a science policy outreach group, determined to bridge the gap between scientists and policymakers. This is an initiative that should be replicated nationwide!

A few days ago at our National Health Research Forum, Dr. Tom Frieden, director of the Centers for Disease Control and Prevention (CDC), himself a global leader in combating Ebola, emphasized how public health is a “best buy,” one that is ignored at our peril. And Dr. Anthony Fauci, the director of the National Institute of Allergy and Infectious Disease (NIAID) asserted: “we need a complete transformation of how we look at science.” That sentiment was echoed by other panelists in a no-holds-barred conversation about what is right, and wrong, with the research ecosystem. Here are links to video from, news coverage about, and a transcript of, the Forum. We are taking the Forum messages to the Hill and to the public; please join us! Continue reading →

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

Dear Research Advocate:

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

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

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

Dear Research Advocate:

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

A Weekly Advocacy Message from Mary Woolley: Labor Day Weekend Check List

Dear Research Advocate:

Labor Day might mean a last chance for R&R, but it also means that election day is right around the corner. It only takes a minute to send a quick email or direct a tweet to candidates. Think of them as candidates for the role of R&D champion! And take a moment to share this call to action with your colleagues, friends and family. The power of social media is undeniable.

aycbeachThere are only 10 days until Congress returns to Washington to face a lengthy to-do list, which is unlikely to shrink much before the November elections. Appropriations action for FY15 has stalled out, with new battle lines being drawn over the time span for a Continuing Resolution (CR). Whatever the length, a CR is no more a solution than is kicking the can down the road on tax provisions. The medical device tax remains unchanged despite its intuitively counterproductive effect on the capital needed to develop lifesaving medical technologies, not to mention the jobs and new businesses that go with that development.  In addition, the R&D tax credit has not been renewed, let alone enhanced or made permanent. If we want our GDP to grow, our tax policies should be aligned with that goal. As things stand, if we don’t figure out how to boost our economy, China’s GDP is projected to surpass ours by 2017.  Continue reading →

A Weekly Advocacy Message from Mary Woolley: Deep thoughts occasioned by ice buckets

Dear Research Advocate: 
 
You have by now heard about the ALS “ice bucket” challenge (show support for ALS research by dumping a bucket of ice water over your head and/or writing a check for $100 to the ALS Association, then challenge three others to do the same.)  Whether viewed as a welcome late-summer distraction from imponderables like conflict in the Middle East, on-going clashes in Ferguson, Mo., or the mounting death toll from Ebola, or, rather, as the emergence of a new kind of advocacy similar to what produced the walks, runs and bike-rides for research that are ubiquitous today, the “ice bucket challenge” is worthy of attention.

I think that public attention to the “ice bucket” challenge is not only good for ALS research (and all the patients and their families who cope with this devastating illness), but is an opportunity to engage a newly-interested sector of the public, including all those members of Congress who have accepted the challenge. Think about those freely written $100 checks and consider that the NIH budget buys only about $100 worth of medical research per American, per year, on all diseases as well as vital basic research.  Add to that other federal agencies’ budgets, the private sectors’ expenditures (industry, academia, philanthropy, patient groups) and we can maybe triple that amount (generously computed, and including development along with research). Is that enough to assure better health and prosperity for our nation? I’d say not even close.  Not when brilliant young people are discouraged to the point of leaving the country if they want to work in science;  not when other nations are poised to take over U.S. leadership in R&D; not when we are looking at ALS heartbreak and huge federal debt associated with the costs of Alzheimer’s, as just two crises we should be focused on intently, with all the resources we can bring to bear.  Continue reading →

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

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

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

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

A Weekly Advocacy Message from Mary Woolley: Behind the headlines

Dear Research Advocate:

News of the rising death toll from the Ebola outbreak in West Africa has captured attention in the U.S. With the arrival of two American patients for treatment in Atlanta earlier this week, we are reminded of our truly global society and the importance of a nimble research ecosystem. Complex global disease threats exemplify the importance of both the public and private sectors in protecting our health.  Why, then, are we not fully funding the NIH, CDC and FDA to ensure the  robust public health infrastructure needed to respond to population-wide threats, to pursue vaccine development and other prevention strategies, and to develop new treatment options for Ebola and a host of other threats?  Why have we not truly empowered industry and public-private partnerships with a regulatory and tax environment worthy of the 21st century?  Readers of these letters don’t need to be persuaded, but can be the persuaders of those who are resisting. Persistent, ill-informed arguments include: we can’t afford more federal support, when in fact we can’t afford the lack of it; our nation’s tax structure need not be competitive with that of peer nations; or industry can act alone.  Our job is to effectively refute them.

Speaking of Africa, the Africa Summit held here in Washington, D.C., earlier this week provided another sort of attention to that continent, which has a swiftly emerging middle class, the youngest population in the world and which, by 2050, will have a population twice the size of China!  Those who are stuck in the “aid” model for assuring that Africa realizes its potential — including its potential as a market — may not realize that there is a crying need for robust science, technology and STEM education as a component of African development if we expect to see self-sustaining economies.  Read more in a pre-Summit op-ed published in last week’s New York Times. Continue reading →

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

Dear Research Advocate:

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

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

A Weekly Advocacy Message from Mary Woolley: A long letter with timely news

Dear Research Advocate:

Today, Senator Tom Harkin (D-IA) — one of the most effective and dedicated champions of medical and health research ever to serve in public office — introduced major new legislation, the Accelerate Biomedical Research Act.  This visionary legislation would increase the budget caps in order to boost National Institutes of Health (NIH) funding to $46.2 billion by FY 2021, a strategy for restoring NIH purchasing power without cutting into funding for other national priorities. You can view my statement on the legislation here and our thank you letter to the Senator here.  It would be terrific if you would write a letter of support for the legislation and send a message encouraging your Senator to sign on.

There’s more good news to share! The Senate Labor-H bill and accompanying report language were released today.  We are grateful to Appropriations Committee Chairwoman Barbara Mikulski (D-MD) and Labor-H Subcommittee Chairman Harkin for helping to conceive of, and agreeing to include, report language to fund a Blue Ribbon Commission on science literacy and public appreciation of science. We’re pleased to have played a role in making this happen but every science advocate deserves credit when federal leaders take a step like this.

In terms of FY15 funding, you may recall that the Senate Labor-H subcommittee proposed NIH be funded at $30.5 billion, a $605.7 million increase, or about a 2% bump over FY14 levels.  The proposed measure also funds CDC at nearly $6 billion, a 3.3% increase from FY14 and funds AHRQ at $373.3 million, a mere .6% increase from FY14.  With the appropriations momentum stalled, rumors are floating around the Hill that the House will soon consider a Continuing Resolution or CR (extending current spending levels) through the election and potentially into December.  Continue reading →

A Weekly Advocacy Message from Mary Woolley: American values at stake

Dear Research Advocate:

My colleagues at Research!America have shared the role as author of our weekly letter during my recent sabbatical. My thanks to them for providing timely and actionable information to our wide network. As I am “re-entering” the Washington space, I have been struck by (1) the significantly worse condition of the roads — potholes everywhere, and now even sinkholes in DC! I’ve been in several global capitals this spring, including in less-developed countries, and DC doesn’t look good in comparison. Via recent domestic travels, I can attest to the poor condition of our roads nationwide, taking a toll on vehicles and our economy, while eroding public confidence in government. Public goods — like infrastructure, education and science — that we have long nurtured through steady investment cannot continue to be resource-starved without dire consequences. No wonder the American public is angry at Washington! (2) I have come back just in time to witness the appropriations process grind to a halt. The clock is ticking down toward August recess, and appropriators have a new excuse for failure to take action, i.e., the migrant children emergency. There will always be national emergencies. By definition they are unpredictable, and some are more complex than others; it nonetheless cannot be acceptable for Congress to grind to a halt when one occurs. Continue reading →

A Weekly Advocacy Message from Research!America: Minibus, Omnibus: What’s best for medical innovation?

Dear Research Advocate:

“Never a dull moment” is how one advocate described this year’s appropriations cycle as Chairwoman Mikulski, Chairman Rogers, and other key appropriators try every which way to restore some semblance of regular order to the process.

The Senate Labor-H bill, which allocates funding for NIH, CDC and AHRQ and was originally scheduled for full committee mark-up on June 12, has been postponed indefinitely. The House has passed a Commerce-Science-Justice (CJS) bill containing a healthy increase (3.2%) in NSF funding, but the House Agriculture bill, which includes a net reduction in FDA funding when new responsibilities are taken into account, was postponed in the wake of a wholly unexpected leadership shake-up. Meanwhile, the Senate is trying something it hasn’t attempted in several years: it is allowing any germane amendment to be offered as it considers a “minibus” of three appropriations measures on the Senate floor: CJS, Transportation-Housing, and Agriculture. Continue reading →

A Weekly Advocacy Message from Research!America: 5 by June 5

Dear Research Advocate:

Today, June 5, is a milestone in our Ask Your Candidates! (AYC!) voter education initiative. Today is the culmination of 5 by June 5, a nationwide push to encourage voters to ask their candidates about the priority of medical progress and encourage five others to do the same. There is still time for you to join us! Click here to send a message to the candidates running for House and Senate in your district. You can customize the message to include your personal reasons for supporting medical research or you can just click send on the message we’ve provided. In this case, it doesn’t just take a village, it takes a nation. Please help us reach voters in every state and every congressional district. Should accelerating medical progress be a higher national priority? If our future leaders understand that their answer to that question is truly important to Americans, perhaps they will enter office as research champions.

Last week, we shared a fact sheet about John Hudson Dilgen, a child with a debilitating and potentially deadly disease called Epidermolysis Bullosa. Medical research is about John. It is also about Carrie, a woman living with a severe form of Multiple Sclerosis. We hope you will find this fact sheet about Carrie useful in your advocacy. When we sent John’s story to Congress, the response was truly overwhelming. Carrie’s story will no doubt have the same impact.

Two articles, one in the Washington Post on June 1, and one in today’s New York Times, offer profound examples of the power of medical research. The Post article discusses accelerated approval of a new medicine that can extend life for a subset of patients with lung cancer, and the Times article describes DNA testing that led to the rapid diagnosis and successful treatment of a little boy whose life hung in the balance. Both of these stories involve precision or personalized medicine, a hallmark of modern medical progress.  Continue reading →