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 →

Chilling Reality. What’s next for ALS?

The Ice Bucket Challenge raised more than $100 million for ALS research, but turning money and enthusiasm into therapies and cures for the deadly disease is an entirely different type of challenge.

Research!America President and CEO Mary Woolley was among the guests on BioCenturyTV This Week on October 19 to discuss the ALS Ice Bucket Challenge, our national voter education initiative Ask Your Candidates! and the need for stronger support for medical research.

We need to make sure to tell the people we’re hiring to serve in Congress that it’s really important to fund research for health, and right now is a good time to be doing that,” said Mary Woolley.

Other guests included:

  • Dr. Brett Morrison, a physician and assistant professor of neurology at Johns Hopkins University
  • Richard Garr, CEO of Neuralstem, a company that is conducting trials of a stem cell therapy for ALS
  • Benjamin Corb, director of public affairs at the American Society for Biochemistry and Molecular Biology

MW BioCenturyTV

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 →

Ask Your Candidates! Is Medical Progress a Priority?

Find out what your 2014 Candidates will do in Congress to support medical research

AYCWith less than a month remaining before Election Day, now is the time to get involved in the Ask Your Candidates! initiative. Through this effort, voters can ask congressional candidates to share their views on accelerating medical progress in America. Every voice makes a difference as we look to find treatments and cures for deadly and disabling diseases like cancer and Alzheimer’s, and other threats like Ebola.

There are two easy ways to participate:

  1. Send an email to your candidates using the pre-drafted message, or a message of your own, and by filling in your contact information and clicking “Send Message.”
  2. Create awareness about the importance of medical research by taking a selfie. Just follow these steps: 1) Personalize an AYC! sign (or create your own sign), sharing why you support medical progress; and 2) Post your signs on Facebook or Twitter, using the hashtag #AYCresearch, or send it to us at askyourcandidates@researchamerica.org. If you’d like to see examples of selfies, see the AYC! selfies Facebook album.

Take action now!

A Weekly Advocacy Message from Mary Woolley: Do we still value discovery?

Dear Research Advocate:

The accomplishments of the recently announced 2014 Nobel laureates in the fields of physiology or medicine, and chemistry are breath-taking. Whether identifying the mechanisms by which the mind comprehends space and place, or enhancing ability to observe how diseases develop, these scientists have, over time, enabled progress that couldn’t have been determined by fiat. Science serves us all via an iterative discovery process, which is why policymakers are skating on thin ice when they censor research that doesn’t promise results that serve a date or purpose certain. Centuries ago, European rulers launched many ventures before eventually discovering the New World — not every journey was a success, nor was everything discovered anticipated in advance. It is ever thus as we continue to explore new worlds, since even as discoveries open new vistas, plenty of surprises occur. Indeed, some new worlds are not as “new” as first thought — to wit, October includes a holiday known to some as Columbus Day and to others as Indigenous Peoples Day. Seeing things in a new light doesn’t mean we should shut down discovery because some aspects of it make us uneasy or call our values into question.

Ebola has called our values into question, to be sure. Do we need a shared sense of existential threat like Ebola to arrive on our doorstep — a “Sputnik moment,” if you will — before Americans mobilize to demand more support for U.S. science?  Although there is every reason to believe that the world can contain Ebola — we have contained all previous Ebola outbreaks — there is no denying that we are not as well positioned as we should be to face down this challenge, due to years of under-investment in research and public health, including research on diseases that seem rare and/or remote.  My op-ed in Roll Call this week drives home this point, calling on decision-makers to act for NIH, CDC, and, fundamentally, for forward-thinking instead of reactive policies. Continue reading →

Medical research key issue for elections

Letter to the editor by Research!America President and CEO Mary Woolley published in the Omaha World Herald.

mary-woolley-webThis is in response to a Midlands Voices essay (Finish the job, fund medical research, Sept. 25). The authors’ articulate case for robust and sustained investments in lifesaving research represents the interests of all Americans who await cures, as well as better treatments and prevention of Alzheimer’s, autism, cancer and diabetes and more.

Many Americans believe that elected officials are not doing enough to combat deadly diseases, as they repeatedly cut funding and fail to enact policies that stimulate rather than stifle research. Two-thirds of our fellow citizens say it’s important for candidates running for office to assign a high priority to funding medical research, according to polling commissioned by Research!America.

With the midterm elections approaching, now is the right time to ask congressional candidates whether they would set a high priority on research conducted at the University of Nebraska Medical Center, Creighton University School of Medicine and research institutions around the country. Ask Your Candidates, a national voter education initiative, gives voters in Nebraska a simple way to engage candidates and learn more about their positions on assuring medical progress.

Nobel Prize Winners Underscore the Importance of Robust Support for Basic Research

This year’s Nobel prize winners in chemistry and medicine or physiology are testimony to the importance of basic research that, while it may not demonstrate immediate benefits to human health, can lead to a greater understanding of deadly disease. Research!America applauds Eric Betzig of the Howard Hughes Medical Institute; Stefan W. Hell of the Max Planck Institute for Biophysical Chemistry in Germany; and William E. Moerner of Stanford University, who received a graduate fellowship from the National Science Foundation, for their work in improving the resolution of optical microscopes. Their achievements have allowed scientists to study tiny cells, and in doing so, more clearly identify the emergence of diseases such as Parkinson’s, Alzheimer’s and Huntington’s. These awardees join the Nobel winners in physiology or medicine – announced earlier this week – Professor John O’Keefe of the University College London, who as a postdoctoral fellow was supported by funding from the National Institutes of Health; and May-Britt and Edvard Moser, both of the Norwegian University of Science and Technology. Their discoveries of cells that provide the basis for how the brain maps surrounding space, allowing us to navigate difficult environments, may lead to a better understanding of diseases. If we are to continue to see progress in overcoming disease, it is vital that our elected representatives take action on behalf of the public’s interest in finding cures and increase this nation’s investment in research.

Breast Cancer Doesn’t Know It’s October

Excerpt of an op-ed by Susan G. Komen President and CEO Judith A. Salerno published in The Huffington Post.

SalernoAs I conducted numerous media interviews about the continued need for research, education, treatment support, and advocacy, it occurred to me that it would be great if we were talking about breast cancer like this every day of the year.

It’s really quite simple. Breast cancer doesn’t know (and doesn’t care) that it’s October, because breast cancer is diagnosed and kills women and men every day of every month of every year. Every 19 seconds, somewhere in the world, a person has a new diagnosis of breast cancer. In the U.S., a woman is diagnosed every two minutes, and one dies every 13 minutes from this terrible disease.

Those are shocking numbers, and behind every one of those numbers is a compelling story. A mother who by sheer will lived long enough to watch a child graduate from high school. A daughter taken too soon from parents who would have given anything to switch places with her. A father carrying a gene mutation that passed breast cancer on to his daughters. A woman without money, without insurance, terrified to seek help until the tumor was breaking through her skin.

I think of these stories in October, and November, and June and April, as does everyone in the breast cancer movement. As much joy as we take in celebrating the women who are cancer-free; as much pride as we take in funding leading research; as much effort as we put into helping the most vulnerable people in our communities, we know that we will be continuing this work until we can shut off the lights and go home, because we’ve cured and prevented this disease.

Read the full op-ed here.

Statement by Research!America President and CEO Mary Woolley on Nobel Prize in Physiology or Medicine

Research!America congratulates this year’s Nobel Prize winners in physiology or medicine, Professor John O’Keefe of the University College London, and May-Britt and Edvard Moser, both of the Norwegian University of Science and Technology. Their discoveries of cells that provide the basis for how the brain maps surrounding space, allowing us to navigate complex environments, may lead to a better understanding of diseases such as Alzheimer’s, which afflicts 44 million people worldwide. O’Keefe, who as a postdoctoral fellow was supported by funding from the National Institutes of Health, made the first discovery of the brain’s “inner GPS” in 1971. The Mosers continued to develop his research, discovering another key component of the brain’s mapping system which shed more light on our ability to navigate. 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 →

Research!America To Honor Leaders in Medical and Health Research Advocacy

Research!America To Honor Leaders in Medical and Health Research Advocacy

Robin Roberts, Michael Milken, Dr. Kenneth Olden,  David Van Andel, Dr. George Vande Woude and the Society for Neuroscience to Receive 2015 Research!America Advocacy Awards

ALEXANDRIA, Va.—September 29, 2014—Research!America’s 19th annual Advocacy Awards will honor distinguished research advocates who are trailblazers in advancing medical progress to improve the health and economic security of our nation. The event will take place on Wednesday, March 11, 2015, at the Andrew W. Mellon Auditorium in Washington, DC.

The 2015 Advocacy Award winners are ABC’s “Good Morning America” anchor Robin Roberts; Michael Milken, founder of the Milken Institute and FasterCures; Dr. Kenneth Olden, Director, National Center for Environmental Assessment, U.S. EPA; David Van Andel, Chairman and CEO, and Dr. George Vande Woude, Founding Scientific Director, Van Andel Research Institute; and the Society for Neuroscience (SfN).

“These exceptional leaders have advanced scientific discovery and innovation through their determination to improve the health of individuals worldwide,” said Mary Woolley, president and CEO of Research!America. “Their work has paved the way for others who are committed to ensuring that we save lives and sustain our nation’s global competitiveness with robust support for research.” Continue reading →

A Weekly Advocacy Message from Mary Woolley: Time to be honest with ourselves

Dear Research Advocate:

This week’s CDC announcement of the worst-case Ebola scenario is staggering. Saying, “Let’s be honest with ourselves …” President Obama addressed the UN this morning on the escalating threat posed by Ebola, urging world leaders to work together to address this truly global crisis. The Biomedical Advanced Research and Development Authority (BARDA) program, which received additional funding for Ebola drug development as part of the recently passed continuing resolution (CR), is a terrific example of how the public and private sectors can work together to develop drugs for national and global health threats like Ebola. BARDA provides market incentives so that private sector innovators can work on noncommercial emergencies. It’s a cost-effective strategy since it precludes the need for government to build drug development capacity the private sector already has, and it’s a good reminder that medical and health research is not about government funding, academic research, or private sector R&D. It’s about all of these things and all of us, working together to save lives.

Let’s be honest with ourselves about something else: policies that cripple private sector investment in research are stifling science.  One such policy involves the research and development (R&D) tax credit, which – despite historical bipartisan support – expired at the end of 2013 and has not been reinstated. Businesses of all sizes across a wide swath of scientific sectors rely on predictable, annual extensions of this tax credit (not that annual extensions are ideal; Congress would also be wise to finally make this credit permanent). Please consider sending a message to your representatives about the importance of reinstating and enhancing the R&D tax credit. Here are two good resources, one nationwide quantitative analysis from the National Association of Manufacturers and one qualitative account of the effects on businesses in Pennsylvania. Members of Congress must work together and quickly upon their return to Washington after the election to not only reinstate the R&D tax credit, but to enhance its reach and effectiveness. And they must pass an appropriations package that recommits to scientific innovation. Note I use the word “must,” not “should.”  When one assumes the role of leader, displaying leadership should not be an option.

And let’s be honest that we are under-investing in our federal research agencies. Determined to alter this state of affairs, Rep. Brian Higgins (D-NY-26), along with Rep. Rosa DeLauro (D-CT-03), recently introduced the Accelerating Biomedical Research Act in the House. The congressman is using some of his district work period/campaigning season to tour institutions that receive NIH funding in his district. If only more incumbents and challengers followed his example!  Rather than despairing that there aren’t more like Mr. Higgins, now is the time to work toward the day that there will be! Candidates who hear voters like you speak passionately now about the importance of advancing medical progress are more likely to become champions for research when they enter Congress next January. Personal stories about why research matters in your life and in your community make for some of the most persuasive advocacy tools.

Let’s be honest that along with personal stories, data truly is important (my advice: tell your story first, after that, add data). Consider the new easy-to-use district-level federal research funding fact sheets from the Federation of American Societies for Experimental Biology (FASEB). These local, by-the-numbers summaries provide information about the number of grants received in nearly 400 congressional districts from the NIH, NSF, DOE Office of Science, and Agriculture and Food Research Initiative in the Department of Agriculture and are useful additions when making your case for research.  We urge you to share this data as well as your commitment to voter education with five of your friends and family!  Join us in the “5 this Fall” campaign on social media.

Final note of honesty about social media … it works! Think “Ice Bucket Challenge” and think about the new ACT for NIH campaign, which is using “selfies” as a way to remind voters and policymakers that research is for everyone, leading to better lives for ourselves, our friends and our loved ones. Reaching an ever-expanding audience via social media is critical. I hope you’ll join Act for NIH by sharing a selfie on social media with the hashtag #ACT4NIH.

Mary Woolley

Hispanic Heritage Month: The Changing Face of Health Care

By Israel Rocha, CEO, Doctors Hospital at Renaissance

Israel Rocha_FinalSeptember 15 marks the beginning of Hispanic Heritage Month, a time to pay tribute to the generations of Hispanics who have enriched America’s history. It’s also an important time to consider how this community can be further empowered to make important contributions, particularly in the future of health care.

Research demonstrates that certain diseases disproportionately impact the Hispanic community, including diabetes, liver cancer, cervical cancer and HIV/AIDS. Clinical trials help researchers find better ways to diagnose, prevent and treat these diseases and others. However, Hispanics are significantly underrepresented in clinical trials. Despite representing 16 percent of the U.S. population, Hispanics comprise only 1 percent of clinical trial participants.

Given this historic underrepresentation, there is tremendous opportunity to boost clinical trial participation within diverse patient populations. According to a July 2013 study by Research!America:

  • More than 40 percent of Hispanics greatly admire clinical trial participants.
  • More than 2/3 of Hispanics would be willing to share health information to help researchers find better ways to prevent and treat disease.
  • Nearly half of the Hispanics polled rate a physician’s recommendation to participate in a clinical trial as very important.

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 →

Fear of vision loss top concern among Americans across all racial and ethnic groups

Stagnant funding could threaten progress in eye research

AEVR eventAmerica’s minority populations are united in the view that not only is eye and vision research very important and needs to be a national priority, but many feel that current federal funding ($2.10 per person, per year) is not enough and should be increased. This may stem from the evidence that most minority populations recognize to some degree that individuals have different risks of eye disease depending on their ethnic heritage.

And while these Americans rate losing their eyesight as having the greatest impact on their daily life and having a significant impact on their independence, productivity and overall quality of life, 50 percent of Americans who suffer from an eye-related disease are not aware of it.

These statics and more were the topic of discussion at a press event in Washington, D.C., today, where members of the media and leaders in the eye and vision research community gathered to interact with a panel of experts and weigh in on the topic of The Public’s Attitudes about the Health and Economic Impact of Vision Loss and Eye Disease. Continue reading →

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