Newsletter

The Research Advocate, our award-winning membership newsletter, provides the latest news and information on medical, health and scientific research advocacy, as well as reports from Research!America and member organizations. Regular features include policy articles, profiles of Research!America members, media coverage of research advocacy issues, a column by Research!America President and CEO Mary Woolley, and important updates to help our members in their own efforts to make research to improve health a higher national priority. For questions or comments contact Jennifer Santisi, editor@researchamerica.org

From Research!America

Sen. Lamar Alexander and Actress and Advocate Kathy Bates Among Honorees for 21st Annual Advocacy Awards Dinner

Sen. Lamar Alexander (R-TN)Kathy BatesSenator Lamar Alexander (R-TN) will be honored with the Edwin C. Whitehead Award for Medical Research Advocacy for his longstanding commitment to research for health including his leadership in securing passage of the 21st Century Cures Act in the U.S. Senate. Kathy Bates, award-winning actress and Lymphatic Education & Research Network (LE&RN) spokesperson, will receive Research!America’s Isadore Rosenfeld Award for Impact on Public Opinion for raising the visibility of lymphedema and lymphatic diseases and advocating tirelessly on behalf of the patient community. The awards will be presented to Sen. Alexander, Ms. Bates and other distinguished honorees at Research!America’s Advocacy Awards Dinner on Wednesday, March 15, 2017 at the Mellon Auditorium in Washington, D.C.

“Last year, Congress passed into law 21st Century Cures, a bill that Senate Majority Leader McConnell called, ‘the most important legislation of the year.' It will help us take advantage of the breathtaking advances in biomedical research and bring those innovations to doctors’ offices and patients’ medicine cabinets across the nation. It will help make better health possible for virtually every American, and I look forward to continuing our bipartisan work in committee this Congress on behalf of American families,” said Sen. Alexander.

As Chairman and as Ranking Member of the Senate Health, Education, Labor & Pensions (HELP) Committee, Sen. Alexander shepherded legislation crucial to the discovery, development and delivery of new medical advances, including the Food and Drug Administration Safety and Innovation Act (FDASIA) and the 21st Century Cures Act. He also played a critical role in securing a $2 billion increase in the budget of the National Institutes of Health in FY16 and in ensuring annual increases in the National Science Foundation budget.

Ms. Bates is a spokesperson of the Lymphatic Education & Research Network (LE&RN), an internationally recognized non-profit fighting lymphedema and lymphatic disease through education, research and advocacy. She has publicly shared her fight with lymphedema, a chronic progressive lymphatic disease that results in disfiguring swelling in one or more parts of the body. An estimated 10 million Americans and 150 million people worldwide suffer from lymphatic diseases.

Other 2017 Research!America Advocacy Award honorees are Anthony S. Fauci, M.D., director of the National Institute of Allergy and Infectious Diseases (NIAID) at the NIH, who will receive the Legacy Award; Phillip A. Sharp, Ph.D., Nobel Laureate and Institute Professor at the Massachusetts Institute of Technology; Leland H. Hartwell, Ph.D., Nobel Laureate and co-director of the Center for Sustainable Health at Arizona State University’s Biodesign Institute and Virginia G. Piper Chair of Personalized Medicine; and The Lupus Foundation of America. The Gordon and Llura Gund Leadership Award will be announced in the coming weeks.

Research!America invites our member organizations to join the Board of Directors and distinguished guests for the 2017 Annual Meeting and luncheon on Wednesday, March 15. The annual meeting will include election of directors and reports from leadership. Kathy Bates and Rep. David McKinley (R-W.Va.) will be among the speakers. The program will include a panel discussion on the progress and opportunities with lupus research featuring a patient advocate from the Lupus Foundation of America, and experts representing industry and the provider community.
 

For more information and to reserve your space at the Awards Dinner, click here. For more information about the Annual Meeting, click here

New Survey Shows Outlook for U.S. Leadership in Science Uncertain

Will the new Administration cultivate a policy environment that will allow research and innovation in the U.S. to flourish? There’s no clear consensus among the public, according to a new national survey commissioned by Research!America. Findings show that Americans are split on whether the U.S. will be seen as the global leader in science and innovation under President Donald Trump (41% of Americans agree, 40% disagree and 19% are not sure). Those in agreement include a strong majority of Republicans (70%) compared to Independents (34%) and Democrats (19%).

When asked if great strides in science and innovation will continue while Donald Trump is President, opinions were also divided (46% agree, 33% disagree and 22% not sure), with more Republicans (74%) than Independents (44%) and Democrats (22%) agreeing. But more than half of respondents (52%) are willing to pay $1 per week more in taxes if certain that all of the money would be spent on additional medical research, including Democrats (60%), Republicans (47%) and Independents (47%).

“It is noteworthy that respondents across party lines agree with putting research to work and paying more in taxes to support medical research,” said Mary Woolley, Research!America president and CEO. “It is not surprising that Republicans are significantly more confident in President Trump’s leadership.”

Furthermore, a majority of Americans agree that scientists should play a major role in shaping policy over a wide range, including the environment (75%), education (58%), roads, bridges and other infrastructure (55%), national defense (51%), and at the highest percentage, for medical and health research (83%).

“Americans recognize that science is fundamental to so many priorities that matter,” added Woolley. “Nothing is more essential to securing a productive society than a high-functioning infrastructure that includes public health.” 

To view the full survey, click here.

Federal Policy Update

President Trump signed an executive order (EO) that imposes a 90-day hiring freeze on federal agencies. It exempts positions deemed necessary to “meet national security or public safety responsibilities.” Key unanswered questions include whether FDA will use this exemption to fill some of its numerous (1000+) open positions, and whether positions financed through industry user fees are included in the freeze. We are working with partner organizations to reinforce the importance of staffing FDA to meet its existing obligations and those associated with 21st Century Cures.  

Another EO to note is the order that banned citizens of seven countries from entering the U.S. for 90 days, and banned refugees for 120 days. Research!America issued a statement calling for the ban to be rescinded. 

The Senate HELP and Finance Committees held hearings to vet Congressman Tom Price (R-GA-06) for the role of HHS Secretary. During the HELP hearing, Dr. Price made a positive comment about the importance of NIH-funded research, but otherwise said little on research-related topics. The Senate Finance Committee approved Congressman Price’s nomination to move to the full Senate floor without any Democrats participating in the vote. 

Funding for most of the government is operating on a continuing resolution (CR) that will expire on April 28, 2017.  Congressional leadership is allegedly finalizing a “CRomnibus” bill.  Research!America made the case via a public letter to leadership urging Congress to make use of the FY17 appropriations bills that passed each House last year to craft final FY17 legislation. Our letter also asks leadership to ensure the 302(b) subcommittee allocation process for FY18 provides sufficient funding for our federal research agencies.  In terms of FY18, it is rumored that President Trump will submit a budget in April, and Congress is moving ahead with the appropriations process prior to garnering the President’s priorities.  

Drug pricing continues to receive significant attention in the press and in Congress, due in part to President Trump’s decision to target pricing during and after his campaign. Research!America continues to make the case that this issue should be part of a broader discussion about health care costs to ensure the solutions do not inadvertently stifle innovation that can bend the cost curve and save lives. 

Advocacy for Research in a New Era

What are effective strategies for engaging a new Administration and Congress on scientific issues? Research!America staff shared insights and recommendations with attendees at the Association of Medical School Microbiology and Immunology Chairs (AMSMIC) Annual Meeting on January 21. President and CEO of Research!America Mary Woolley kicked off the discussion, emphasizing the importance of building relationships and finding common ground with policymakers.

Suzanne Ffolkes, Research!America’s VP of Communications, reinforced the point of building a better narrative about the benefits of research that connects with the values, beliefs and world views of different audiences. Sharing a story, not data, is key to getting the attention of non-scientists, she added.. Participants  provided examples of how they are reaching out to the community through town halls and civic meetings aimed at improving science literacy.

Maintaining relationships with policymakers is equally as important as forging new connections. Ellie Dehoney, Research!America’s VP of Policy and Advocacy, provided information on how to follow-up and  stay engaged with congressional representatives after meetings. Dehoney said to expect some tough questions, for instance, “Why should the federal government be funding research?” She provided  tips on answering those questions, and challenged participants to contact their congressional representatives in the coming weeks.  

Federal Agency Heads Leave Strong Legacy

Departing heads of federal health agencies have left a strong legacy in driving new initiatives, improving research and development, and tackling major health threats. These leaders have participated in Research!America programs as keynote speakers and panelists, providing timely and relevant information to support the work of research advocates.

As director of the Centers for Disease Control and Prevention (CDC) since 2009, Thomas Frieden, M.D. MPH, spearheaded the nation’s response to disease outbreaks and public health emergencies including the H1N1 flu pandemic, Ebola and Zika epidemics, as well as the opioid crisis. He also supported a rapid-response emergency fund to better prepare for and respond to these outbreaks. In a recent interview with STAT, Dr. Frieden described his next steps, saying, “…what I’ve always done to determine my next job is to ask the simple question: How can I save the most lives? And that’s the formula I’ll be using going forward.”

During his tenure, former Food and Drug Administration (FDA) commissioner Robert Califf, M.D., was a strong proponent of strengthening the agency’s workforce and evidence generation. "It’s very noticeable when we make decisions with good evidence," Califf said in a recent Washington Post interview. "It's still emotionally charged because we regulate such a large part of the economy, and there are winners and losers. But when we have good evidence, it’s easy to defend the decisions and the arguments are typically good arguments to have about how you interpret good evidence.” Dr. Califf is returning to Duke University School of Medicine.

In his final blog post, Andrew Bindman, M.D., former director of the Agency for Healthcare Quality and Research, said he is optimistic about the agency’s future. “AHRQ is not a payer or a regulator but a facilitator that uses research and evidence to support constructive improvements in health care.” Dr. Bindman championed integration of data analytics into medical practices. He will resume his role at the University of California San Francisco as primary care physician and health services researcher. 

Congressional Briefing on Medical Progress

Research!America and the Congressional R&D Caucus will host a congressional briefing, Medical Innovation 101, on February 14 in the Rayburn House Office building on Capitol Hill. A panel of experts will demystify the process behind medical and health progress, tracing the path from bench to bedside and discussing key variables that will affect efforts to overcome deadly and disabling diseases. Discussion will touch on economic impact, R&D and how various aspects of the research ecosystem works together under the common goal of seeking life-saving treatments. The panel will be moderated by Eleanor M. Perfetto, Ph.D., M.S., senior vice president of strategic initiatives, National Health Council. 

Speakers include Keith R. Yamamoto, Ph.D., vice chancellor for science policy and strategy; director, UCSF Precision Medicine; vice dean for research, School of Medicine; Professor, Cellular & Molecular Pharmacology, University of California, San Francisco; Brian Gill, vice president of corporate affairs, Celgene; Joe V. Selby, M.D., MPH, executive director, Patient-Centered Outcomes Research Institute (PCORI); and John E. Schneider, Ph.D., CEO, Avalon Health Economics LLC. The panel was made possible in part by support from Eli Lilly and Company

For more information and to register, click here

Public Engagement in Support of Science

During a presentation at the Huntington Medical Research Institutes on January 30, Research!America president and CEO Mary Woolley explained why scientists should step up their role as advocates. As elected officials unveil new policies with implications for science and scientists, scientists must help ensure that the public, media and policymakers understand how science contributes to economic growth and prosperity, national security and better health.

Woolley discussed the current state of federal science and health research agency budgets, shared relevant public opinion survey data and provided insights on how to effectively communicate with non-scientists. A majority of Americans (67%) agree that public policies should be based on the best available science, according to a new survey commissioned by Research!America. At a time when Congress and the public may be taking scientific progress for granted, and given heightened public and policymaker demand for less government spending as well as more transparency and accountability, scientists must be more engaged in public outreach, said Woolley. 

Honoring Diabetes Advocate Mary Tyler Moore

Mary Tylor Moore receiving an award on behalf of JRDF at Research!America’s Advocacy Awards Dinner in 2005. Mary Tyler Moore is remembered for her extraordinary work on stage, film and television but her efforts to raise awareness of the importance of diabetes research are also recognized by patients and research advocates alike. Moore was diagnosed with Type 1 Diabetes when she was 33-years-old—right before ‘The Mary Tyler Moore Show’ began filming in 1970.

“When I was first diagnosed, I debated about how up front I should be about my diabetes, and whether telling colleagues might hinder my work as an actor”, Moore explained in a 2006 interview, “But I also realized that if I did speak out, I might be able to help others better cope and manage their diabetes.” 

For more than thirty years, Moore served as the International Chairman of the Juvenile Diabetes Research Foundation (JDRF). In this role, she actively engaged lawmakers and on several occasions accompanied children living with Type 1 Diabetes to speak with congressional representatives to advocate for research funding as part of the JDRF’s Children’s Congress.

Research!America honored Moore at the 2005 Advocacy Awards, where she accepted an award on behalf of the JDRF, which was being saluted as an “organization that has distinguished itself by its advocacy.”

In a statement, the JDRF said, “With Moore’s passing our country has lost an advocate, a hero and a woman who ‘turned the world on with her smile’ both on and off screen.”

Action Alert

Pass an FY17 Budget 

Instead of passing an updated budget for Fiscal Year 2017 (FY17) before 2016 ended, Congress passed a temporary stop-gap or continuing resolution (CR) that flat-funds government until April 28, 2017. A CR means no increase in funding for medical research and other national priorities. Americans don’t want our nation to settle for the status quo while others advance. We want our country to do more to fight deadly and debilitating diseases and keep our nation moving forward. 

Ask Congress to pass a real budget, one that invests more in priorities like public health preparedness and medical research. Americans deserve better than a CR. We deserve progress. 

Click here to take action now.

Special Thanks to our Supporters and Research!America Alliance Members

Regular Features

President's Letter

Mary Woolley, President and CEOI can’t recall a more unsettled time at the intersection of research and policy/politics than the present. That intersection is by definition where Research!America lives, where we were established to have impact as an alliance of stakeholders in research for medical and health progress. Making a difference during the current disruptive transition in Washington means staying focused as we make opportunities to reinforce current leaders and develop new relationships in Congress and the Administration. We are also anticipating, but not over-reacting to potential policymaking or other actions that our alliance can support or should oppose. In the latter category, we have spoken out against President Trump’s executive order on immigration (see elsewhere in this newsletter). In the former, we have been meeting nearly every day with one or more congressional offices, as there is quite a lot of relevant business at hand. Things are happening quickly in several quarters – the momentum gathering for the March for Science is a high-profile example. We’re keeping a finger on that, and so much more. Please be sure to tell us what you are doing to assure that science remains a top public priority!  Follow us on social media and e-mail. We will continue to give you suggestions for advocacy; please join us in speaking out and taking action.  

Member Spotlight: American Association of Pharmaceutical Scientists

Founded: 1986

Location: Arlington, VA

Mission: Advancing the capacity of pharmaceutical scientists to develop products and therapies that improve global health.

Binodh DeSilvaThe American Association of Pharmaceutical Scientists (AAPS) is a professional, scientific organization of approximately 8,000 members employed in academia, industry, government, and other research institutes worldwide. AAPS advances the capacity of pharmaceutical scientists to develop products and therapies that improve global health. AAPS members primarily come from a pharmaceutics, biopharmaceutics, or pharmacy field of study. AAPS members also represent those scientists from complimentary disciplines, such as chemistry, biology, engineering, and medicine, involved in the discovery, development, and manufacture of pharmaceutical products and therapies.

The pace at which new diseases emerge and spread in today’s world presents both challenges and inspiration for members of the American Association of Pharmaceutical Scientists (AAPS).  Pharmaceutical scientists are critical to shaping global public health and being at the forefront of medical research and therapeutic discovery.  Ultimately, pharmaceutical scientists are seeking to prevent and cure disease.  They contribute to every facet of medical research including drug discovery, translational research, clinical practice and manufacturing of essential medicines. Moreover, pharmaceutical scientists impact health at every stage of life from childbirth through elder care, making it vital that medical research is dynamic and ongoing.

As an organization, AAPS is dedicated to supporting the capacity of pharmaceutical scientists to do their work as best as possible.  By offering high quality educational experiences via webinars, e-courses, workshops and peer-reviewed publications, as well as valuable cross-specialty learning and networking opportunities, AAPS works to support scientists through all stages of their academic and professional development.  Over its 30 year history, AAPS has strived to be a valued, unbiased scientific resource by actively engaging its members and the broader scientific community. 

Through this strategy of engagement, AAPS is committed to working collaboratively with partners, such as Research!America, who share an interest in supporting sound scientific research. AAPS is committed to increasing awareness of the enormous value and benefits deriving from medical research and the vital role that research plays in sustaining human health. It’s essential that public policy support an environment where ethical, responsible medical research can thrive. Like many in the research community, funding for biomedical research is a critical issue facing our nation’s research enterprise, since sustained and predictable funding can be difficult to come by.

“Many pharmaceutical scientists work in laboratories where the focus is on basic research, which is the starting point to creating medicines that are safe and effective for patient consumption. Without the policies and funding to support fundamental science, and the applied science that follows, our society’s ability to prevent and treat disease would be severely limited,” said AAPS President Binodh DeSilva.

In support of the AAPS mission, the organization has provided comment on regulatory guidance, developed white papers to advance scientific thinking, and hosted forums for preeminent scientists to share their research and findings. In the past year, AAPS has begun the development of a proactive advocacy program and is working with members and key partners to create a data-driven strategy based on the needs of its members and the pharmaceutical science community. AAPS will help members to identify priority issues, as well as create awareness among members about the opportunities to engage with policymakers and federal agencies.  As part of this advocacy plan, AAPS is proud to engage with Research!America, an organization that has provided important leadership and knowledge in support of federal research funding.

As a new year begins, AAPS and its members are excited for new opportunities while continuing to remain focused on the long term vision of transforming scientific discoveries into better medicine to improve global health.

In the News

Media Matters

Advocacy AwardsSen. Lamar Alexander

CQ Roll Call highlighted Research!America’s announcement of Senator Lamar Alexander (R-TN) as the 2017 Edwin C. Whitehead award honoree.

Policy Wish List 2017

Mary WoolleyIn an Inside Health Policy article about Research!America’s public policy wish list, president and CEO, Mary Woolley, was quoted about the importance of boosting investments in research.  “Robust funding for medical and health research will support President-elect Trump's call for a safer, better and more prosperous nation."

 

Immigration Executive Order Impacts ScientistsRush Holt, Ph.D.

Research!America board member Rush Holt, Ph.D., CEO, American Association for the Advancement of Science (AAAS), was quoted in a Washington Post article about the impact of the president’s executive order on scientists. Research!America survey findings related to science and innovation in the new Administration were featured in a Genetic Engineering & Biotechnology News article about the executive orders.

CDC Climate Change Conference

Georges Benjamin, M.D.In a Washington Post article about a climate change conference cancelled by the Centers for Disease Control and Prevention, Research!America board member Georges Benjamin, M.D., director of the American Public Health Association (APHA), was quoted about the importance of elevating the national discussion about the connection between climate change and human health. The conference has been rescheduled and will be sponsored by the APHA and several nongovernmental groups such as the Harvard Global Health Institute.

 

 

U.S. Leadership in Science Under President Trump

Research!America survey data about U.S. global leadership in science and innovation under President Donald Trump was featured in Genetic Engineering & Biotechnology News, Laboratory EquipmentR&D Magazine and several other publications.

Health InequityVictor Dzau, M.D.

Research!America board member, Victor Dzau, M.D., president of the National Academy of Medicine, was quoted in MedPage Today about the need to address social determinants of health.

NIH Leadership

In an S&P Global article about the temporary extension of Dr. Francis Collins as National Institutes of Health director, Research!America VP of Communications Suzanne Ffolkes commented that the decision will help ensure continuity with the agency’s ongoing research projects.

James Madara, M.D.

Collaboration for America’s Health

Research!America board member James Madara, M.D., EVP and CEO, American Medical Association and former acting administrator of CMS, Andy Slavitt co-authored an op-ed in Modern Healthcare calling on healthcare leaders to improve coordination to ensure quality of patient care.

 

From Washington

The Outlook for Science in the New Administration and Congress

“A new administration is in place and it’s an excellent opportunity for young scientists and engineers to engage with many different audiences,” said American Association for the Advancement of Science (AAAS) CEO, Rush Holt, Ph.D., during a January 26 webinar, titled “The Outlook for Science in the New Administration and Congress.” Holt encouraged young scientists to apply for fellowships on Capitol Hill, such as AAAS’s Congressional Science & Engineering Fellowships program, to learn first-hand about policymaking while contributing their scientific expertise to the federal policymaking process.

Norman Ornstein

Guest speaker Norman Ornstein, Resident Scholar at the American Enterprise Institute, cited “angry populism” triggered by the 2008 financial collapse as the main motivation behind growing distrust of authority, a broad distrust that he said extends from the political realm to the scientific world.

While Ornstein noted that the use of science as a “political football” dates back decades, he stressed that the misuse, manipulation and de-legitimization of scientific facts to support a particular ideology has “now been taken to a new level as we move into uncharted territory with a Republican Congress and a Donald Trump presidency.” Ornstein and Holt pointed to examples such as the anti-vaccination and climate change denial movements.

Ornstein’s advice to scientists? “Put aside your charts and graphs and tell a story.” He emphasized the importance of communicating science to the public in a way that is relatable.

Holt called on scientists get involved in politics. “It’s not easy but it can be a very satisfying thing to be part of progress,” he said.

Click here to listen to the full webinar.

New Videos, Toolkit Share Impact of Vision-Saving Technology

Using OCT, Charlotte’s eye doctor was able to diagnose and treat her glaucoma early, minimizing the damage the disease could do to her sight.Highlighting a specific example of government-funded research becoming vision-saving technology, the Association for Research in Vision and Ophthalmology (ARVO) has launched its first public outreach campaign centered on optical coherence tomography (OCT).

OCT is an imaging technology used to visualize the back of the eye without the need for dilation, making visits to the eye doctor faster and easier for patients. It provides more detailed information to doctors than previous technologies, allowing for more accurate diagnoses.

The campaign includes a series of short, public-friendly videos introducing patients who have benefitted from the technology, the role government funding played in its development and what the future may hold – if funding continues. In addition, an advocacy toolkit describing the number of jobs created by the manufacture and use of the instruments, and Medicare savings (over $11 billion) enabled by the technology is available.

To view all the free-to use resources, or learn more, visit www.arvo.org/OCT. Join the conversation at #OCTimaging.

Media Contacts

Suzanne Ffolkes
VP Communications
571-482-2710

Anna Briseño
Senior Manager of Communications
571-482-2737

Without continued support for health research, many of the most promising young scientists, their ideas and a myriad of potentially life-changing scientific breakthroughs will vanish into oblivion.
Paul Marinec, PhD; University of California San Francisco