Category Archives: Advocacy Messages

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 →

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Why support Research!America

In honor of #GivingTuesday, Jayme and Julie talk about their experience working at Research!America to help boost federal support for medical research and innovation.

Jayme Hennenfent , D.V.M., M.S.

JaymepicI was honored to embark on a science policy fellowship at Research!America because I know firsthand how crucial funding is to the discovery process. My alma mater, The University of Illinois at Urbana-Champaign, is a preeminent research institution, spending over a half a billion dollars on science and technology research annually. However, even powerhouses like this are not immune to the current struggle for project funding support, which I personally observed when I saw world-class researchers dedicating more and more of their time towards the grant application process, and less to scientific discovery. Towards the end of my study there, I became increasingly interested in how policy and science intersect, and in turn, how important a scientific perspective can be in policy development. Research!America brings a wealth of scientific perspective to their fight for progress in medical science, through dedicated leadership and permanent staff, as well as fellows and interns who get the opportunity to learn about the policy process up close. It feels great to work in this environment where they are so passionate about both the policies and the science they support!

Jayme Hennenfent is a Science Policy Fellow at Research!America. She is a 2014 graduate of the University of Illinois at Urbana-Champaign, holding a doctoral degree in veterinary medicine and a master’s degree in microbiology.

Julie Babyar, R.N., M.P.H

JulieWe all have family, friends and acquaintances that depend on a strong medical research infrastructure to make their future better. In order to ensure a promising future, I strive to understand all aspects of health care in various sectors.

I chose to apply for an internship with Research!America because I believe it to be one of the best organizations for medical research advocacy and policy. Increasing constraints alongside multiple agendas in the field of medical research call for opportunities for a unified voice. Research!America historically and presently represents this voice. It is an organization where the mission statement truly matches both employee and member actions, and thus it is an organization shaped in sincerity. The mentorship and education provided to me has been invaluable. 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 →

Statement by Research!America President and CEO Mary Woolley on White House Emergency Funding Request to Congress to Fight Ebola

November 5, 2014

Fighting Ebola and other infectious disease threats is a rightful and critical facet of our national defense. As Congress considers the President’s comprehensive emergency funding request for Ebola, we urge members of Congress to respond on a bipartisan basis. Americans expect our nation’s leaders to present a unified front against national threats, allocating the funding needed to protect our nation. We also expect common sense, which means treating an emergency as an emergency and refraining from haphazardly cutting funding for other priorities in order to “pay for” protecting the American public. Sustained investments in research are necessary to enhance our capability to fend off and prevent other major health challenges that could disrupt medical progress and create economic instability.

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 →

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 →

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.

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: 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