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.

From Research!America

America Speaks, Vol. 15 Features Newly Released Poll Data

A majority of Americans (53 percent) agree that their family's health has been improved by medical research, according to America Speaks, Volume 15, a compilation of public opinion polls commissioned by Research!America. And an increasing percentage of Americans say the U.S. Food and Drug Administration should move more quickly in order to get new treatments to patients, even if it means there may be risks, 38 percent in 2015 compared to 30 percent in 2013. The newly released poll data summary booklet reveals Americans' attitudes about research and innovation ranging from regulatory review to the role of government in STEM education.

A strong majority (73 percent) say the federal government should assign a higher priority to improving education focused on science, technology, engineering and mathematics and careers in those fields. In other polling results, seven-in-ten adults (70 percent) agree basic scientific research, even if it brings no immediate benefits, should be supported by the federal government, and more than two-thirds of Americans (69 percent) say it is important to conduct medical or health research to understand and eliminate health disparities.

Investing in research is important to job creation, technological breakthroughs and economic growth,according to 79 percent of those surveyed. And more than half (53 percent) say the federal R&D tax credit, which helps businesses plan ahead when it comes to R&D spending, should be made permanent, even when told the federal government loses billions in revenue annually with this credit.

“Our polls show that Americans view research as an economic driver as well as being the answer to health threats that continue to outrun us,”said Mary Woolley, president and CEO, Research!America.

Communication between scientists and policymakers is crucial, according to 80 percent of Americans who say it is important that elected officials at all levels listen to advice from scientists. A majority (78 percent) also say it is important for our nation to support research that focuses on improving the health care system.

"Like Research!America, the American Medical Association is committed to improving the health of the nation and ardently supports funding for medical research that not only generates lifesaving discoveries, but also fuels economic growth by increasing jobs and productivity, and helps control health care costs,” said James L. Madara, M.D., CEO and executive vice president, American Medical Association. 

The publication also includes national public opinion poll data on eye and vision research. To view America Speaks, Volume 15, visit www.researchamerica.org/poll_summary.This publication is made possible through a contribution from the American Medical Association.       

Honoring Outstanding Leaders in Research Advocacy

On March 11, Research!America will honor leaders in research advocacy at the 19th Annual Advocacy Awards Dinner. This year’s awardees, whose advocacy efforts have been notably effective in advancing our nation’s commitment to research, include Reps. Fred Upton (R-Mich.) and Diana DeGette (D-Colo.); Robin Roberts, anchor of ABC's“Good Morning America”; Michael Milken, founder of the Milken Institute and FasterCures; Kenneth Olden, Ph.D., director, National Center for Environmental Assessment, U.S. EPA; David Van Andel, chairman and CEO, and George Vande Woude, Ph.D., founding scientific director, Van Andel Research Institute; and the Society for Neuroscience (SfN). The dinner will be held at the Andrew W. Mellon Auditorium in Washington, D.C.

Prior to the awards dinner, Research!America will hold its 26th Annual Meeting of Members at the Ronald Reagan Building and International Trade Center. The meeting will feature guest speakers Alex Silver, co-founder, executive chair and CEO, EB Research Partnership, and Rep. Chris Van Hollen (D-Md.). To register for the Annual Meeting, visit http://bit.ly/1yCfQjg.

For more information about the 2015 Advocacy Awards, and to learn more about the honorees, visit www.researchamerica.org/advocacy_awards.

Research!America Launches New Website

Timely information on both public and private sector research and innovative tools for advocates are featured on Research!America’s new website, www.researchamerica.org, a comprehensive, engaging new platform that provides visitors easy access to content.

“Our dynamic, mobile-friendly website gives policymakers, media, scientists and advocates resources on the economic and health benefits of medical innovation from bench to bedside,” said Mary Woolley, president and CEO, Research!America.

Visitors can readily access compelling public opinion poll data, fact sheets, state-by-state data on research funding and economic impact, letters and testimony submitted to Congress and the administration, information on upcoming events and much more.

Effectively Sharing Research Across Multiple Communication Platforms

It is essential that scientists are able to communicate the importance of their research, and not just to their peers, but to the general public, the media, science skeptics, and others through a multitude of platforms, including social media and public presentations. Connecting the Dots: Effectively Communicating Science to Non-Scientists, a professional development program hosted by Research!America and The George Washington University (GWU), to be held April 13-14, is designed to enhance the ability of scientists to communicate their research to the public. Instructors and guest speakers include both GWU faculty and Research!America board members, who will share their areas of expertise with the participants.

Day one of the program will feature sessions on the different components of strategic communications and audience identification. The instructors will focus on how to tell compelling stories to engage various audiences. Other sessions will help participants be prepared to meet with the press, handle difficult questions and more. The day will culminate with a session on how to leverage social and digital media platforms. Day two will open with a focus on public presentations, with attendees learning how to create an effective style of delivery to make complex issues informative and interesting for non-scientists. Communicating with science skeptics, including demonstrating accountability and transparency, will give participants insights on how to have a constructive dialogue with that audience. The instructors will also discuss how to create compelling, creative leads, and enhance them with facts, figures and eye-catching visuals.

The program will be held at the Milken Institute School of Public Health building on the Foggy Bottom campus of GWU. To learn more about the program, visit www.researchamerica.org/connectingthedots.

Initiatives for a Positive Change

Initiatives bearing on the nature, scope and pace of medical progress continue to proliferate in Washington. From tax policy to funding to targeted research to reform of regulatory pathways, Congress and the executive branch are signaling a strong interest in transformative action to bolster medical progress and speed patient access to new innovations.

Bills have been introduced to make the Research & Development Tax Credit permanent; establish alternate and supplemental funding streams for the National Institutes of Health (NIH) and other research agencies; repeal the medical device excise tax; exempt from sequestration the user fees paid by industry to the U.S. Food and Drug Administration (FDA); empower low income populations to participate in clinical trials without losing access to income support; and modify existing laws bearing on medical discovery to achieve a faster moving, more patient-oriented path to medical innovation.

The FY16 appropriations cycle is in full swing as the House and Senate Appropriations Committees negotiate the challenge of allocating funding that is severely constrained by sequestration. Some members of Congress are pushing for suspension or elimination of the stringent sequestration budget caps, but these efforts have yet to gain traction. Absent such action, the federal discretionary budget will remain essentially flat in FY16. Members of Congress will submit their appropriations priorities to the Appropriations Committees later this month, and the various Appropriations subcommittees will maintain an ambitious schedule of hearings to evaluate the President’s budget blueprint.

Reps. David McKinley (R-W.Va.), Susan Davis (D-Calif.), André Carson (D-Ind.) and Peter King (R-N.Y.) are circulating a “Dear Colleague,” recruiting members of the House from both parties to sign on to a letter to appropriators requesting robust FY16 funding for NIH. It is likely that a similar bipartisan letter will be circulated in the Senate. Finally, the House Energy and Commerce Committee continues to work on the 21st Century Cures initiative, an ambitious effort to reform the medical research, development and delivery pipeline. Chairman Fred Upton (R-Mich.) released a discussion document in January that provided a jumping off point for the hard work of identifying impactful, responsible, bipartisan policy changes. Sen. Lamar Alexander (R-Tenn.), the chairman of the senate HELP Committee, has initiated a similar process in the senate. Stakeholder input can help ensure that this welcome bicameral interest in medical progress translates into positive change.

Action Alert

Stand up for Research

Annually, members of Congress have the opportunity to influence the appropriations process by submitting their funding priorities to appropriators. Now is the time to ask your representatives in the House and Senate to champion increased funding for medical and health research in FY16.

Visit http://bit.ly/1MnhRrS learn more.

Regular Features

President's Letter

As winter turns ever-so-slowly to spring, the Congress turns ever-so-slowly to lawmaking. We are working shoulder-to-shoulder with our members and partners to assure that when lawmakers do act, they act to assure medical progress. There are more moving pieces of legislation, and even more drafts, involving research and innovation than we have seen in many years; a healthy sign in what has become a bleak legislative landscape. In this refreshed scenario, advocates can have an exceptionally high degree of impact. We will be honoring some of the most effective advocates for research and innovation in our nation on March 11; their leadership over the years inspires so many others to take action. I hope that all of them are able to stay on in Washington for a few days to meet with members of Congress and the administration to press the message that there can be no more kicking the can down the road when it comes to action that will save lives, speed cures to patients, and prevent disease and disability. Patients are ready; the science is ready; let’s identify the resources and legislate the policies that are long-overdue.

Flash forward a year. March 2016 will feature “Super Tuesday” as presidential candidates clamor for votes and the nomination of their parties. Even if you don’t want to think about another campaign season so soon on the heels of the last, it’s important to do so. Wouldn’t it be great if all aspiring candidates – across party lines – were prepared and eager to talk about what they would do, If elected, to assure that research for health is a top priority for this nation once again? We are determined to make it so. If you have suggestions on how we can accomplish our goal – and/or want to join us in the effort – please contact me: mwoolley@researchamerica.org.

Special Thanks to our Principal Partners and to New and Renewing Research!America Alliance Members

Research!America Extends Special Thanks to Our Principal Partners

2015 Advocacy Awards

Corporate Host

Janssen Pharmaceutical Companies of Johnson & Johnson

Presenting Partner:

WebMD Health Foundation

Program Partner:

Lilly

Sponsors:

AcademyHealth

AdvaMed

Battelle

Sanofi

Friends:

Mary J. C. Hendrix, Ph.D. and Chuck Craft

March of Dimes Foundation

Society for Neuroscience

Pharmaceuticals U.S.A., Inc.

Visit www.researchamerica.org/partnership_opportunities for ways to support Research!America.

Special Thanks to New and Renewing Research!America Alliance Members

New Members

Aetna, Inc.

Anthem, Inc.

Renewing Members

American Academy of Nursing

American Academy of Pediatrics

American Association for Cancer Research

American Association for the Advancement of Science

American Chemical Society

American Federation for Medical Research

American Society for Biochemistry and Molecular Biology

American Society for Clinical Investigation

The American Society for Tropical Medicine and Hygiene

Association of Anatomy, Cell Biology and Neurobiology Chairpersons

California Institute for Regenerative Medicine

ChemoCentryx, Inc.

Cleveland State University

Colgate-Palmolive Co.

Duke University Medical Center

The Feinstein Institute for Medical Research

Greater Akron Chamber

Harvard School of Public Health

Keryx Biopharmaceuticals, Inc.

Melanoma Research Alliance

National Disease Research Interchange

The New York Stem Cell Foundation

Orthopaedic Research Society

University of Louisville School of Dentistry

Washington University School of Medicine in St. Louis

WebMD Health Corp

Not yet a member? Join Research!America today at www.researchamerica.org/supportourwork.

Member Spotlight: Wright State University

Founded: 1967

Location: Dayton, Ohio

Mission: Transform the lives of our students and the communities we serve.

Wright State University is named after Dayton’s early aviation pioneers, Orville and Wilbur Wright, and continues their tradition of innovation. A rich and dynamic community of nearly 18,000 students on two campuses, Wright State has an ongoing commitment to transforming the lives of our students and the communities we serve. A Carnegie-classified research university, it is an accredited state university offering a broad range of studies across eight colleges and three schools. The university offers more than 90 undergraduate degrees and has 88 graduate programs including master’s, doctoral (Ph.D.,M.D.), and professional (Psy.D., Ed.D.) degree programs.

Wright State University sits at the hub of the re-emerging Dayton region, long a hotbed of innovation and creativity. The university’sresearch portfolio includes a broad spectrum of fundamental and use-inspired and applied research, and reflects a commitment to cross disciplinary and translational research. The university is known for its strong educational, research and clinical partnerships with industry, government, and neighboring institutions, according to Robert Fyffe, Ph.D., vice president for research and dean of the graduate school at Wright State.

The university recently established the Wright State Research Institute (WSRI) to further bolster its applied research capabilities, especially those relevant to the needs of the Air Force and local industry (largely representing the health care and defense sectors). Through WSRI, the Boonshoft School of Medicine and many other academic units, the university has established robust research partnerships with locally based companies, other Ohio institutions of higher education, regional private and federal hospitals, and with the Air Force Research Laboratory that is headquartered at the neighboring Wright-Patterson Air Force base.

The university community is looking forward to the opening in April 2015 of a new $37 million research building thati s focused on neuroscience-engineering collaboration. The new facility is designed to enable the university to capitalize on the synergies that come from having neuroscientists, neurologists and neurosurgeons, and engineers and computerscientists, and their students, working shoulder to shoulder in a powerfully interactive environment. Wright State is also committed to the expansion of STEM education and workforce developmentin the region and state. In January, the university opened the Aerospace Professional Development Center, supported by the state of Ohio, encompassing a Center for Workforce Development and the Advanced Technical Intelligence Center.

The university’s commitment to serving the broader community has been recognized nationally by the 2015 Community Engagement Classification by the Carnegie Foundation for the Advancement of Teaching, and the President’s Higher Education Community Service Honor Roll.

The advocacy efforts of Wright State University complement those of Research!America. Federal funding for biomedical and health research isimportant both forshort-term economic benefits and long-term support of the institutions that underpin the economy of the Dayton region. Wright State University works closely with the Dayton Development Coalition (DDC), a major economic development engine for our region that collaborates with multiple agencies and organizations at the federal level, as well as with our congressional delegation and professional academic societiesthat lobby for funding in theirspecific areas. In this complex and ever changing political and funding climate, Wright State values the watchful eye that Research!America keeps on a broad range of developments and the ongoing communication with its members.

From Washington

UMR/ITIF Report Explores New Avenues to Sustained Research Funding

A new report, Healthy Funding: Ensuring a Growing and Predictable Budget for the National Institutes of Health,  provides alternative funding options to increase and sustain investment in medical discovery and cultivate economic growth in the biomedical sector.

The report, produced by United for Medical Research (UMR) and The Information Technology and Innovation Foundation (ITIF), comes after more than a decade of flat funding for biomedical research. The suggestions for Congress include adjusting discretionary spending caps to ensure increases to the National Institutes of Health (NIH) budget, establishing a biomedical research fund to supplement annual appropriations, and increasing stability and predictability with multi-year budgeting.

Increased funding support for biomedical innovation in China, the U.K., Singapore and Australia has come as the result of comprehensive strategies, the report notes, which has affected America's global competitiveness in biomedical research and negatively impacted American industries.

To read the full report, visit http://bit.ly/17Es3ge.

PhRMA's new web platform supports young scientists

With new resources on its competitive research grants and fellowships, the Pharmaceutical Research and Manufacturers of America (PhRMA) Foundation's new platform, www.phrmafoundation.org, provides valuable tools for young scientists whose research involves some of the most complicated areas of drug discovery. Research articles of past award recipients are featured on the new website.

“By enhancing the accessibility of our grants and fellowships, we hope to foster the careers of young scientists who are exploring a variety of challenging disciplines, such as cardiovascular disease, Alzheimer's and cancer,” said Eileen Cannon, executive director, PhRMA Foundation, in a press release.

NSF Director Emphasizes Need to Increase Investment in Basic Research

France Córdova, director, National Science Foundation (NSF), visited the University of Arizona (UA), a Research!America member, in early February to meet with NSF grant recipients and tour the facilities, including UA’s Bio5 Research Institute, which works to find solutions to the complex, biology-based challenges, such as how to prevent, treat and cure disease. In the past fiscal year, UA facilities, as well as teams and individuals at the university, were awarded nearly $70.8 million by the NSF.

“I really do come back with stories about discovery research that I think are very important to talk about in hearings and other venues when I talk about what we’re doing - concrete examples of where NSF’s investment has made a difference,”said Córdova, in an interview with the Arizona Daily Star.

Córdova also emphasized the importance of investing in basic research. Currently, the NSF is only able to fund 20 percent of the proposals it receives, and, as she expressed at a recent Senate hearing on Appropriations, that number should be closer to one-third.

“A lot of younger scientists … are leaving their fields because the opportunities are just not there for getting their science funded,” she said.

Advancing the Treatment of Rare Diseases

The Pharmaceutical Research and Manufacturers of America (PhRMA), a Research!America member, has released a new report, A Decade of Innovation in Rare Diseases, highlighting progress over the last 10 years in understanding rare or “orphan” diseases, as well as drug development that has led to groundbreaking therapies (230 new medicines already approved by the U.S. Food and Drug Administration (FDA), with 450 more in development).

In particular, the report looks at five rare diseases and the advances in treatments that have led to improvements in patient survival and quality of life: chronic myelogenous leukemia (CML), chronic lymphocytic leukemia (CLL), pulmonary arterial hypertension (PAH), hereditary angioedema (HAE), and cystic fibrosis (CF).The report also reviews therapies that have been transformed by significant milestones, including some conditions for which the first-ever treatments became available.

The release of the report coincided with Rare Disease Week on Capitol Hill 2015, during which advocates for the rare disease community met with elected officials on the Hill and visited the National Institutes of Health (NIH). Research!America President and CEO Mary Woolley spoke at the event’s Lobby Day Breakfast, held prior to the Capitol Hill visits.

"Let’s make sure Congress steps up support for NIH, the world’s leader in biomedical research and innovation,” said Woolley. “Their Office of Rare Disease Research and Undiagnosed Disease Program are integral to advancing rare disease research; there is a need for more rare disease research. I don’t have to underscore that point!"

Currently, one in 10 Americans (30 million) and an estimated 350 million people worldwide are living with a rare disease (one that affects 200,000 people or less). To read the full report, visit http://onphr.ma/1EsGJw6.

Repairing the Imbalance in America's Research Enterprise

Nearly a year ago, a study published in the Proceedings of the National Academy of Sciences, discussed the imbalance between a growing scientific community and decreasing funding for research, and the “hypercompetitive atmosphere” that this has created, as well as the impact on careers, education and scientific productivity. On April 11, the University of Wisconsin-Madison is hosting a workshop, inspired by this study, to address these defects in America’s biomedical research enterprise. The workshop – Rescuing U.S. Biomedical Research from its Systemic Flaws: Strategies and Pathways Ahead – will be conducted in collaboration with the study’s authors, including: Bruce Alberts, former National Academy of Sciences president, and Shirley Tilghman, former president of Princeton University. Throughout March, weekly pre-workshop discussions will be held and are open to everyone in the basic, clinical, biomedical, social science and engineering research fields. More information on the workshop can be found at http://research.wisc.edu.

"Snapshots" of Clinical Trial Diversity

A U.S. Food and Drug Administration (FDA) effort launched in 2014 aims to combat a historical bias and show the number of women, minorities, seniors and children that participate in clinical trials. The agency highlighted the demographics behind the research trials of six newly approved drugs and starting in 2015, the FDA has promised to publish similar data for every new drug within 30 days of approval. So far, the effort has been met with mixed responsesfrom advocacy groups and policy experts, with reactions ranging from hope that it will incentivize industry to broaden recruitment of clinical trials, to concerns that the FDA isn't doing enough. The Society for Women’s Health Research and the American Heart Association say the FDA should take an even largerstep and release data from past trials, as well asfor earlier trial phases.

Understanding Doubts about Science

The American public has so many reasons to applaud scientific advances, especially those that improved health and wellness, and yet, there continues to be a wave of doubt. In a recent issue of National Geographic, writer Joel Achenbach highlighted examples pulled straight from the headlines that demonstrate how an individual’s core values and beliefs often trump scientific fact.

“We live in an age where all manner of scientific knowledge – from the safety of fluoride and vaccines to the reality of climate change – faces organized and often furious opposition,” said Achenbach in the article. “Empowered by their own sources of information and their own interpretations of research, doubters have declared war on the consensus of experts.”

The article also broached the important challenges of replicability of research and how it impacts public perception of science. In biomedical research, results that can’t be reproduced outside the lab, is a worrisome trend that has led to calls for greater transparency. When scientists fall short it creates confusion in the public discourse. Of particular note is that increased scientific literacy doesn't necessarily translate to greater acceptance of scientific findings. Achenbach spoke with Dan Kahan of Yale University, who had conducted a study in which he asked participants to rate climate change, and then correlated the answer with that individual’s scientific literacy. He said that “higher literacy was associated with stronger views – at both ends of the spectrum.”

In a presentation earlier this year at the National Research Council’s Public Interfaces of the Life Sciences Roundtable at the National Academy of Sciences (NAS), Kahan discussed research that shows that while people don’t distrust scientists, they do distrust information that conflicts with what they, and the group they identify with, believe.  Ultimately, people want information that is consistent with the opinion their group holds, and this impacts their level of respect for the experts providing that information.  Kahan and others at the session also said that people don’t distrust scientists, per se, so there is ample reason to believe that scientists can find ways to connect to non-scientists if they understand the ‘terms of engagement.’  

For more on the work of the NAS Roundtable, visit http://bit.ly/1wZ42a5.

In the News

Media Matters

Improving the Antibiotics Pipeline

Research!America board member Mark McClellan, M.D., Ph.D., and director of the Health Care Innovation and Value Initiative at Brookings, co-authored two articles in Health Affairs. He wrote about the inadequate pipeline of high priority antibiotics as resistant strains of infectious illness proliferate and proposed specific reforms to revitalize innovations that promote public health. In his second piece, Dr. McClellan and a team of researchers reviewed recent literature to identify limitations in measuring and assessing innovation.

FDA Commissioner Hamburg’s Departure

Research!America President and CEO Mary Woolley was quoted in The Lancet about outgoing U.S. Food and Drug Administration (FDA) Commissioner Margaret Hamburg. She also weighed in about the appointment of FDA Deputy Commissioner for medical products and tobacco, Robert Califf, M.D., in a separate profile piece.

“His background and his commitment are very well-suited to the FDA. He is an acknowledged leader in clinical research, he really knows the territory and he is committed to improving the clinical trial system, which is overdue for improvement,” Woolley said.

U.S. Leadership in Research

Research!America board member and Institute of Medicine president, Victor Dzau, M.D., provided comments in a syndicated Scripps Media article about a report released last month from the Journal of American Medical Association (JAMA) related to U.S. global leadership in the sciences. The article was featured in several media outlets across the country.

“Our budget is a reflection of our public. If the Congress is elected to slash and burn, then they’re going to slash and burn. If they elect to double the NIH budget, then they will,” Dzau said. 

Poll Data Summary

Research!America’s newly released, America Speaks,Volume 15, a compilation of public opinion polls commissioned by Research!America, was featured in a Regulatory Affairs Professionals Society (RAPS) article. The piece focused on poll data related to public support for faster regulatory approval of drugs; public interest in clinical trials; willingness to share personal health information;  and confidence in the current system in the U.S. for evaluating the safety of vaccines and recommendations for when they should be given.

Congressional Support for Research

Woolley was quoted in a Clinical Informatics News article about an uptick in congressional proposals to advance research. “The tsunami of congressional proposals in support for research is a welcome change that the nation has been waiting for, in terms of finding answers to health challenges that only research can provide,” she said.

Funding for Young Investigators 

An article published in DelMarva Now about Rep. Andy Harris’ (R-Md.) proposal to prioritize funding for young researchers featured comments from Woolley. “If the clear-cut intent is to make sure you fund new investigators, make sure you put new money in the system for that purpose and others,” she said.

 

Media Contacts

Suzanne Ffolkes
VP Communications
571-482-2710

Anna Briseño
Senior Communications Specialist
571-482-2737

You can change the image of things to come. But you can’t do it sitting on your hands … The science community should reach out to Congress and build bridges.
The Honorable John E. Porter