Tag Archives: Research!America

A Weekly Advocacy Message from Mary Woolley: What about the wave of science doubt?

Dear Research Advocate:

The cover story of this month’s National Geographic describes the recent wave of science doubt as a “pop culture meme,” featuring in-the-news examples like climate change and vaccines, and discussion of tough challenges like replicability of research, scientific literacy (of note: increased science literacy has been shown to lead to increased polarization of opinion about science), and what is meant, anyway, by effective “science communication”? The article doesn’t mention what I often call the “invisibility” problem (see, for example, data showing low percentages of Americans who can name a living scientist), but that topic was addressed directly and indirectly in several sessions at last week’s annual meeting of the American Association for the Advancement of Science (AAAS).

Data from a Pew Research poll of AAAS members show that a majority of scientists now believe that it is important to engage with the public, with a high percentage saying they do so regularly. That is welcome news. Another AAAS session brought out the importance of the quality of that engagement, exploring connecting with non-scientists in ways that is positive for both scientist and non-scientist. And, Professor Susan Fiske of Princeton spoke to an overflow crowd in her featured session about work showing that all of us – people in general – for better or worse, and with consequences to match – make quick judgments about others’ intent and their degree of competency. (Perception of competency + perception of good intent = trust.) Fiske noted that politicians are almost never trusted, although they are sometimes viewed as competent. Scientists are mostly considered competent, but they are also considered to be cold, a judgment that can throw their intentions into question. Fiske said that it is possible to change perceptions about scientists if they convey warmth and motivation to cooperate, showing ‘worthy intent.’ (If you have followed Research!America’s work in communicating to the non-science trained public, you know that we advocate saying and conveying, “I work for you.” That advice fits right in here.) Continue reading →

Member Spotlight: United Therapeutics Corporation

By Martine Rothblatt, PhD, Chairman and CEO of United Therapeutics Corporation.

MRothblatt Official photo 2#59583CFounded in 1996, United Therapeutics Corporation is a biotechnology company focused on the development and commercialization of unique products to address the unmet medical needs of patients with chronic and life-threatening conditions. We have four approved products on the market today and we are not stopping there! From the United States to Europe to the Asia Pacific, we are proud of our multicultural business environment where employees can collaborate with people all over the world. As a group, we are relentless in our pursuit of “medicines for life”® and continue our research into treatments for pulmonary arterial hypertension, cancer, and some of the world’s most complicated viral illnesses.

We are proud to partner with Research!America to promote better medical advancements, biomedical research, and overall greater global health initiatives.  We have seen first-hand how tireless research and dedication to a cause can change the lives of thousands of patients and their loved ones. We began our story by conducting extensive research on a treatment for a deadly disease so rare, Pulmonary Arterial Hypertension (PAH), that other medical companies had abandoned any pursuits for treatments or a cure. Continue reading →

Statement by Research!America President and CEO Mary Woolley on President Obama’s Precision Medicine Initiative

President Obama’s Precision Medicine Initiative could potentially drive medical and health research into exciting, new territory as we advance efforts to develop the right treatments at the right time for individual patients. A laser-focus approach that takes into account a patient’s genetic profile, environment and lifestyle is critical to treat diseases such as cancer which afflicts millions of Americans. Only about a quarter of Americans believe the U.S. has the best health care system in the world, according to public opinion polling commissioned by Research!America. This initiative could help reverse both the perception and the reality with targeted treatments that will save lives and improve health care delivery.

This initiative is an important development for patients, physicians and researchers who will benefit from a stronger national commitment to precision medicine and for those who may yet take advantage of the new tools and therapies that will result from this effort. And many Americans are ready to support this endeavor. Polls show more than half say they are willing to share their personal health information to advance research and help improve patient care, and a majority believe that elected officials should listen to advice from scientists. This initiative is a major step towards building a stronger public-private partnership to leverage health data and technology to accelerate the discovery and development of tailored treatments for patients.  Continue reading →

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

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

A Weekly Advocacy Message from Mary Woolley: 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

Funding research

Letter to the editor by Research!America VP of Communications Suzanne Ffolkes published in The Gainesville Sun.

In reference to the Dec. 28 editorial “Funding innovation,” countless medical breakthroughs would not have been possible without the support of federal funding. It is imperative that research and innovation become a higher national priority for the new Congress.

Bipartisan proposals to advance medical progress — like the 21st Century Cures Initiative that includes provisions to boost federal funding for research, modernize clinical trials and incentivize the development of new drugs and devices, among others — should be given serious consideration. Stagnant funding over the last decade and sequestration have taken a toll on research institutions in Florida and across the country. Continue reading →

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

Research!America and Partners Salute Heroes on the Front Lines of Public Health

Public Health Thank You Day, November 24, 2014

ALEXANDRIA, Va.-November 20, 2014-As Thanksgiving approaches, Research!America and leading U.S. public health organizations urge Americans to salute public health professionals who go above and beyond to protect the health of our nation. Public Health Thank You Day honors all those unsung heroes who keep our drinking water safe and air clean, develop vaccines, track and investigate infections, and protect us against  threats  such as influenza, the Ebola and Enterovirus D68 outbreaks and natural disasters.

“Every day, public health professionals here and around the world work in challenging and sometimes dangerous situations to protect our health.  The Ebola epidemic in West Africa and cases of Ebola in the U.S. are a reminder of the global nature of public health threats,” said Thomas R. Frieden, M.D., M.P.H., director of the Centers for Disease Control and Prevention (CDC). “Whether they are working to keep us safe from infectious disease threats, or finding ways to promote healthy opportunities, thanks to all the dedicated public health professionals who work to keep us safe and healthy.”

These everyday heroes include our health inspectors, environmental health scientists, laboratorians, epidemiologists, public health researchers, sanitation workers, nurses and many other dedicated workers. The CDC, local health departments and various institutions within our public health infrastructure have come together to address recent outbreaks, and public health professionals are tackling these threats head-on – as they do with other health challenges on a daily basis. Continue reading →

Statement from Research!America President and CEO Mary Woolley on Hon. Rush Holt named AAAS CEO

November 18, 2014

We extend warmest congratulations to Congressman Rush D. Holt, Ph.D., on the announcement of his new position as chief executive officer of The American Association for the Advancement of Science (AAAS) and executive publisher of Science family of journals. As a trained physicist, Representative Holt leveraged his scientific understanding to propel and enact policies that have contributed significantly to improving our nation’s health and economic security. During his distinguished tenure in Congress, he worked tirelessly to lift the ban on federal funding for embryonic stem cell research and helped enact the America COMPETES Act to strengthen investments in research and development. Representative Holt recognizes the value of inspiring the next generation of scientists, helping to restore investments in the Department of Education’s Mathematics and Science Partnerships program. His passion for science and commendable track record make him an exceptionally fine choice to lead one of the nation’s most highly-regarded and well-respected scientific organizations. We look forward to working closely with Representative Holt to build a deeper appreciation for science among policymakers and the general public. Outgoing AAAS CEO and Research!America board member, Alan Leshner, Ph.D., has been an outstanding leader and we are confident he will continue to be a prominent voice in science advocacy.

 ###

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: 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 →

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 →

Promising Research Can’t Stall for Lack of Funding

Excerpt of a joint op-ed by Research!America President and CEO Mary Woolley and Susan G. Komen President and CEO Judith A. Salerno published in The Huffington Post.

MW & JSFebruary 23, 1954, was a milestone in the history of American medical research. That day, children at Arsenal Elementary School in Pittsburgh lined up to receive injections of a promising vaccine. Within months, schoolchildren all over the country were doing the same, and polio was on its way to being eradicated in the United States. The disease, which had killed and paralyzed children and adults alike, would no longer be a threat.

This remarkable achievement would not have been possible without the work of Dr. Jonas Salk and his team at the University of Pittsburgh, and — equally significant — grant support from the National Foundation for Infantile Paralysis, now known as March of Dimes. Policymakers played a role, too, when the Polio Vaccine Assistance Act of 1955 made possible federal grants to the states for purchase of the vaccine and for the costs of planning and conducting vaccination programs.

A generation or two later, millions of individuals worldwide benefited from another major medical breakthrough. Remember when being diagnosed as HIV-positive was an automatic death sentence in the 1980s? Accelerated research supported by the National Institutes of Health (NIH), in partnership with Burroughs Wellcome and Duke University, resulted in the development of AZT, the first drug that slowed the replication of HIV. By 1987, the drug won FDA approval and marked the first major treatment in extending the lives of HIV/AIDS patients. 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 →