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

Joe Biden, 47th Vice President of the United States, to be Honored at Research!America’s Advocacy Awards Dinner

For his exceptional leadership with the Cancer Moonshot, the Biden Cancer Initiative and other important initiatives that advance research for health, Joe Biden, 47th Vice President of the United States, will receive the Gordon and Llura Gund Leadership Award at Research!America’s 21st Annual Advocacy Awards Dinner on Wednesday, March 15.. The program, which brings together leaders from government, industry, academia, scientific societies and patient groups, will be held at the Andrew W. Mellon Auditorium in Washington, D.C.

“The energy behind the Cancer Moonshot is a result of Joe Biden’s unflinching determination to prevent and halt the progression of cancer,” said The Honorable Mike Castle, Research!America Board of Directors Vice Chair. “He’s a true visionary who has the capacity to marshal the necessary brainpower and resources to help us make greater strides in cancer research.”

Under Biden’s leadership, the White House Cancer Moonshot Task Force facilitated novel, innovative and impactful collaborations among twenty government agencies, departments and White House offices, and over 70 private sector collaborations designed to achieve a decade’s worth of progress in five years in the prevention, diagnosis and treatment of cancer. Biden also helped lead the effort to pass the 21st Century Cures Act which provides $1.8 billion over seven years for the Cancer Moonshot’s scientific priorities. In recognition for his public service, Biden was awarded the Presidential Medal of Freedom, the nation’s highest civilian honor, with distinction.

Other 2017 Research!America Advocacy Award honorees are Senator Lamar Alexander (R-TN) who will receive the Edwin C. Whitehead Award for Medical Research Advocacy; Anthony S. Fauci, M.D., director of the National Institute of Allergy and Infectious Diseases (NIAID) at the NIH, the recipient of the Legacy Award; Kathy Bates, award-winning actress and Lymphatic Education & Research Network (LE&RN) spokesperson who will receive the Isadore Rosenfeld Award for Impact on Public Opinion; Phillip A. Sharp, Ph.D., Nobel Laureate and Institute Professor at the Massachusetts Institute of Technology, the recipient of the Raymond and Beverly Sackler Award for Sustained National Leadership; Leland H. Hartwell, Ph.D., Nobel Laureate and director of the Pathfinder Center at Arizona State University’s Biodesign Institute and Virginia G. Piper Chair of Personalized Medicine who will receive the Geoffrey Beene Builders of Science Award;  and The Lupus Foundation of America, the recipient of the Paul G. Rogers Distinguished Organization Advocacy Award.

For more information and to reserve your seat, visit www.researchamerica.org/advocacy_awards

28th Annual Meeting of Members and Panel Discussion on Lupus Research

Research!America invites alliance members to join the Board of Directors and distinguished guests for the 28th Annual Meeting of Members on March 15, 12 – 2pm ET at the Willard InterContinental Hotel. The annual meeting will include election of directors, reports from leadership and other member responsibilities.

Guest speaker The Honorable David McKinley (R-WV-01) will share his perspective as a champion for public and private-sector driven progress in medical and health research. McKinley has served as a member of the Energy and Commerce Committee, which shaped the U.S. House 21st Century Cures legislation, and has played a lead role in bipartisan initiatives to increase funding for the National Institutes of Health.

The program will feature remarks from award-winning actress and Lymphatic Education & Research Network (LE&RN) spokesperson Kathy Bates. Ms. Bates will be honored later in the day with the Isadore Rosenfeld Award for Impact on Public Opinion during the 2017 Advocacy Awards Dinner for raising the visibility of lymphedema and lymphatic diseases and advocating tirelessly on behalf of the patient community.

The annual meeting will also include a panel discussion on the progress and opportunities with lupus research featuring experts in lupus research and clinical care. Panelists will include: Christopher Collins, M.D., rheumatologist, MedStar Washington Hospital Center; Allie Gutshall, patient advocate and volunteer,  Lupus Foundation of America; and Sue Dillon, Ph.D., global therapeutic area head, Janssen Immunology, Janssen Research & Development, LLC, Janssen Pharmaceutical Companies of Johnson & Johnson. The panel discussion will be moderated by Virgil Dickson, Washington bureau chief, Modern HealthcareThe Lupus Foundation of America will be honored with the Paul G. Rogers Distinguished Organization Advocacy Award during the Advocacy Awards Dinner.

There is no registration fee for members, however advance registration is necessary. For more information and to register, click here.  

Federal Policy Update

The fate of fiscal year 2017 (FY17) funding remains unclear. The current continuing resolution (CR) expires April 28, but there may be a short-term extension while appropriators try one final time to work out a hybrid CR-omnibus or “CRomnibus” bill.  Our congressional champions have asked advocacy groups to keep pushing for the CRomnibus option, which is the only opportunity to secure increased, rather than flat, funding in FY17 for discretionary budget priorities. Regarding FY18, Research!America recently sent a letter to all Members of Congress urging them to support robust funding for NIH, CDC, FDA, NSF, and AHRQ.  

President Trump is expected to release his 2017 “skinny” budget on March 14. In his joint address to Congress, the president discussed budget and policy priorities in general terms, including his hope for cures to illnesses, his desire to invest in women's health, and rebuild our infrastructure. We highlighted in our statement after the President’s Address to Congress that these priorities are why it’s necessary to assure that the FDA and other federal health agencies have the resources to turn his vision into a reality.

However, there have been statements in the news that the White House will request a $54 billion reduction in non-defense discretionary spending (NDD) and a commensurate increase in defense spending. A cut of that size to NDD would likely require significant across-the-board spending reductions. While we believe the current Congress will not abide this kind of reduction, the Majority will be pressured to meet the President somewhere in the middle. Research!America’s state-by-state and other fact sheets provide real world examples (mined from public and private sector driven innovation) of the enormous return on research investment.  

Recently, key congressional leaders sent a bipartisan/bicameral letter reinforcing the critical importance of vaccines, as well as the rigorous safety and efficacy standards to which they must adhere. The letter represents the thinking of a majority of Americans-- roughly the same percentages among Republicans and Democrats-- who support a school-based vaccine requirement and agree with the scientific consensus underlying widespread use of the MMR vaccine.

On March 2, the House Energy and Commerce Committee’s Health Subcommittee convened the first of a series of user fee hearings, this one focused on the biosimilar (BsUFA) and generic (GDUFA) user fee programs. The subcommittee plans to hold brandname prescription drug (PDUFA) and medical device (MDUFA) user fee hearings later this month.  

Scientists to Gather in Washington, D.C. and Worldwide on April 22

The scientific community is coming together to celebrate the many ways science has profoundly improved the lives of people worldwide, leading to solutions to our most pressing health, economic and security challenges. Research!America has joined the American Association for the Advancement of Science and other prominent organizations to partner with the March for Science on April 22. In the last month, more than 280 satellite marches across the globe have been organized with others added each day, and more than 50,000 volunteers have responded to offer assistance.

“By shining a light on science, we can create a stronger foundation for science funding, science education and science leadership,” said Research!America president and CEO Mary Woolley. “Ultimately, we hope this will be the beginning of a sustained effort that will empower champions of science across the political spectrum, and stimulate greater public support of science.”

April’s events will provide opportunities for scientists from all disciplines to elevate their level of civic engagement and amplify how science serves society, accelerating medical progress, saving lives and creating a better world for the next generation.

Supporting organizations include Sigma Xi, Association for Research in Vision & Ophthalmology, American Society for Cell Biology, Consortium of Social Science Associations and ScienceDebate, among others.

For more information, visit www.marchforscience.com

In Memoriam of The Honorable Robert Michel

(L to R) The Hon. Robert Michel; Jay Gershen, DDS, Ph.D.; Mary Woolley; Louis Sullivan, M.D. The Honorable Robert Michel of Illinois, who died on February 17 at age 93, served as minority leader for 14 years, the longest-serving minority leader in the U.S. House. The Republican congressman represented Illinois’s 18th congressional district from 1957 to 1995.

“Robert Michel was an exemplary public servant who put the needs of his constituents and his country above party politics,” said The Honorable John Edward Porter, Research!America’s Board Chair. “He reached across the aisle and worked with Republicans and Democrats alike to achieve common goals and address critical issues that impacted the health and prosperity of our nation.”

After leaving Congress, he served as senior advisor to the Campaign for Medical Research and joined the lobbying firm Hogan & Hartson (now Hogan Lovells) where he worked toward doubling the National Institutes of Health’s budget with the late Honorable Paul G. Rogers.

President Clinton presented Michel with the Medal of Freedom in 1994, the nation’s highest civilian honor, saying Michel “served our nation well, choosing the pragmatic but harder course of conciliation more often than the divisive but easier course of confrontation.” Michel was honored for his work with the Congressional Distinguished Service Award in 2003 and the Edwin C. Whitehead Award for Medical Research Advocacy at the 2004 Advocacy Awards Dinner. 

Honoring Research!America Emeritus Director Eugene Garfield

Eugene Garfield, Ph.D., who served as a member of Research!America’s board from 2001 to 2010, and as an Emeritus Director until his death February 26, will be remembered as the “father” of the impact factor, a key metric in journal publishing.

An information scientist, Garfield pioneered scientometrics, the quantitative study of scientific literature. His work led to the creation of citation databases including the Web of Science.

Garfield was also the founding supporter of Research!America’s Garfield Economic Impact Award,  established in 2002, to recognize outstanding research that demonstrated the economic impact of medical and health research.

In 1986, Garfield founded The Scientist, a news magazine tailored for science professionals, which covers a range of topics central to the life sciences. The Scientist’s Editor in Chief Mary Beth Aberlin said that Garfield established The Scientist as a ‘labor of love,’ and more than 30 years later, “it is an honor to carry on his legacy.”

H. Carton Rogers III, vice provost and director of libraries at the University of Pennsylvania, shared in a statement to The Scientist, “He was an amazing character whose influence on information science, writ large, can’t be underestimated.”

Action Alert

Fight for a Healthy Future

While not all members of Congress sit on the committees that draft the bills to provide annual funding (appropriations) for federal government programs, every member of Congress has the opportunity to submit their opinion through “member appropriations requests.” As your members of Congress begin submitting their requests for fiscal year 2018 (FY18), make sure you encourage them to assign a high priority to agencies that conduct medical and health research. 

Send your members an email and urge them to request robust funding for NIH, CDC, NSF, AHRQ and FDA: click here.

Special Thanks to our Supporters and Research!America Alliance Members

RESEARCH!AMERICA EXTENDS SPECIAL THANKS TO OUR SUPPORTERS WHO HAVE CONTRIBUTED SINCE THE PUBLICATION OF OUR FebruaryNEWSLETTER.

2017 Advocacy Awards

American Association for the Advancement of Science

American Cancer Society

American Heart Association

American Society for Microbiology

Ann Lurie

Arizona State University

Bristol-Myers Squibb

Eli Lilly and Company

Mary Hendrix and Chuck Craft

Janssen Pharmaceutical Companies of Johnson & Johnson

Merck & Co., Inc.

Sanofi

Van Andel Research Institute

Vanderbilt University Medical Center

Washington University in St. Louis

2017 National Health Research Forum

Amgen

Capitol Hill Briefing and Survey on Migraines and Chronic Pain

Amgen

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

SPECIAL THANKS TO New and RENEWING RESEARCH!AMERICA ALLIANCE MEMBERS

New Members

American Dental Association Health Policy Institute

Consortium of Universities for Global Health

International Retinal Research Foundation, Inc.

Marathon Pharmaceuticals

Patient Centered Outcomes Research Institute (PCORI)

Renewing Members

AdvaMed (Advanced Medical Technology Association)

Albert Einstein College of Medicine, Inc.

American Academy of Nursing

American Association for Cancer Research

American Association of Pharmaceutical Scientists

American Association of Tissue Banks

American Federation for Medical Research

American Foundation for Suicide Prevention

American Medical Informatics Association

American Public Health Association

American Society for Biochemistry and Molecular Biology

American Society for Clinical Investigation

The American Society for Microbiology

The American Society for Tropical Medicine and Hygiene

The American Society of Hematology

Amgen

Association of Professors of Human and Medical Genetics

The Association for Research in Vision and Ophthalmology

Barth Syndrome Foundation

Beyond Celiac

Cancer Support Community

Celgene Corporation

Colgate-Palmolive Co.

Drexel University

Federation of American Societies of Experimental Biology

Harvard School of Public Health

MassBio (Massachusetts Biotechnology Council)

Milken Institute School of Public Health at the George Washington University

National Disease Research Interchange

Oregon Health & Science University

PhRMA

Scleroderma Foundation

Sjogren’s Syndrome Foundation

Society for Advancement of Violence and Injury Research

Stanley Manne Children’s Research Institute

University of Maryland School of Dentistry

University of North Carolina School of Medicine

Vanderbilt University Medical Center

Washington University School of Medicine in St. Louis

WedMD Health Corp

Regular Features

President's Letter

Mary Woolley, President and CEOAs President Trump moves from campaigning to governing, he has reframed several themes. Embedded in his first address to Congress, an illustration of the need for regulatory reform was aimed squarely at the FDA. While we agree that achieving faster medical progress is the goal, and that the FDA must keep pace with 21st century science, we can’t get there by ignoring the facts on the ground. The FDA is the most responsive -- that is, speediest -- drug and device regulating agency in the world, all the while assuring the highest of safety standards. FDA’s excellence in delivering on its mission is not the problem, bandwidth is; the agency must have more robust funding support if it is to do more of what it already does very well indeed. In addition, in order for the FDA to receive and review more -- and more innovative -- applications, both public and private research discovery entities, in both the public and private sector, must be adequately funded and policies enacted that incentivize them to succeed, and to do so more quickly. There will be more to say on this topic in the months ahead, and more advocacy to do! Meanwhile, as the President’s campaign pledge to renew our nation’s infrastructure has come back into focus, it’s important that all of us who are committed to making this a healthier nation urge the Administration and the Congress to include renewal of our public health infrastructure in long overdue make-overs.   

Member Spotlight: MassBio

Founded: 1985

Location: Cambridge, Massachusetts

Mission: To advance Massachusetts' leadership in the life sciences to grow the industry, add value to the healthcare system and improve patient lives.

Robert K. CoughlinMassBio is a not-for-profit trade association founded in 1985 and committed to advancing Massachusetts' leadership in the life sciences to grow the industry, add value to the healthcare system and improve patient lives. Today, the organization represents 975+ biotechnology companies, academic institutions, disease foundations and other organizations involved in life sciences and healthcare, the vast majority of which are engaged in medical research.

MassBio and its member organizations are committed to being part of a sustainable healthcare system where patients have access to the innovative treatments and therapies they need. That’s why MassBio advocates for research funding, and why its member companies are investing billions of dollars in the research and development of new scientific techniques, new diagnostics and new drugs to solve some of the world’s most vexing medical challenges. But that R&D investment, which is a major driver of the national economy and certainly here in Massachusetts, is threatened by a growing wave of efforts to increase barriers for companies trying to find the next generation of treatments and cures, said MassBio President & CEO Robert K. Coughlin.

“We have all heard a number of headlines about the rising costs of healthcare, with an overemphasis on the cost of drugs. MassBio continues to educate policymakers and other stakeholders that prescription drugs account for approximately 12% of overall healthcare expenditures, a proportion that has not changed in the last several decades. The true “cost” of innovative medicines and cures cannot be calculated in a vacuum.  Our system must evolve beyond measuring cost to measuring value—value to patients and value to society,” Coughlin said.

Biotechnology has revolutionized the delivery of healthcare and has a meaningful impact on both patient well-being and public health. Cutting-edge therapies and technologies, many of which are being discovered in Massachusetts, can also add material value to the healthcare system not necessarily captured through snapshot cost analyses. MassBio argues that the current system—where insurers project and prepare on very short term horizons—cannot accurately measure the long-term benefits of innovative therapies, including costs avoided through decreased hospitalizations or the societal benefits of increased productivity. The system cannot readily absorb innovative treatments and cures that may have higher up-front costs but better value for patients and the system over time, Coughlin said.

“As an industry, we are focused on solutions. Our companies have embraced value-based contracting and alternative payment models and in many cases are actively working with Massachusetts insurers to ensure patients are only paying for the value a medicine provides. We continue to advocate for national policy changes to accelerate the approval of generics, the system’s mechanism to lower costs over time,” he said. “These are dialogues that have the potential to truly move the needle and help shape a healthcare system for today and into the future.”

MassBio is proud to continue to work with Research!America and its members to advocate for solutions at the national level that balance sustainability and access for patients.

To learn more about MassBio, visit www.MassBio.org

From Washington

Demystifying the Research Continuum

Eleanor Perfetto, Ph.D., M.S.Medical innovation is about what we can accomplish with patients, said Eleanor Perfetto, Ph.D., M.S., senior vice president of strategic initiatives at the National Health Council during Research!America’s “Medical Innovation 101” Capitol Hill briefing on February 14.

Perfetto moderated the panel of experts who described how different aspects of the research pipeline contribute to the discovery, development and delivery of new treatments for deadly and disabling diseases. They provided recommendations on how to create a more efficient research infrastructure that speeds medical progress.

Keith Yamamoto, Ph.D., vice chancellor for science policy and strategy; vice dean for research at University of California San Francisco and Keith Yamamoto, Ph.D.Research!America board member, stressed the essential role of federal funding and collaboration between the public and private sector.

Yamamoto also described precision medicine as a means to improving clinical trials and lowering health care costs while tailoring treatment outcomes for individuals. “We must shift [the] focus from blockbuster drugs to targeted therapies,” he said.

Joe Selby, M.D., MPH, executive director of the Patient-Centered Outcomes Research Institute echoed Yamamoto’s sentiments, adding "One size does not fit all in medication."

Avalon Health Economics LLC’s CEO John Schneider, Ph.D., noted that increased “drug utilization” not only offsets health care costs but it brings clinical and economic value.

The Congressional R&D Caucus joined Research!America in presenting the briefing, which was made possible in part by support from Eli Lilly and Company.

AAAS Panel Discussion Highlights the Potential for a U.S. Innovation Deficit

As science investments stagnate, there’s a growing concern other countries could outpace the U.S. in research and development. Basic research has led to countless scientific breakthroughs including the MRI, a machine widely used for diagnostic medical imaging, and, more recently, the development of a promising Ebola vaccine, which is now in early phases of testing.

The American Association for the Advancement of Science (AAAS) hosted a panel discussion February 22 addressing the benefits of basic research  in a new report, “The Future Postponed 2.0: Why Declining Investment in Basic Research Threatens a U.S. Innovation Deficit.” The report, a collection of research studies that could lead to major breakthroughs, says increased financial support of basic science will ensure the U.S. remains the leader in global innovation.

“If we don’t make the investments [in research], we short ourselves and even more we shortchange future generations,” said Rush Holt, Ph.D., CEO of AAAS and Research!America board member, the moderator of the discussion.

Maria Zuber, Ph.D., chair of the National Science Board and E.A. Griswold professor of geophysics and vice president for research at MIT, described basic science as the grounding on which advances in applied research and development can be made.

Other speakers at the event were Michel Pagano, M.D., chair of the department of biochemistry and molecular pharmacology at the New York University School of Medicine; Marc Kastner, Ph.D., the president of the Science Philanthropy Alliance; and Andrea Ghez, Ph.D., distinguished professor of physics & astronomy and head of UCLA's Galactic Center Group. For the full report visit www.futurepostponed.org/

National Academies Report on Genome Editing

Recent scientific advances in genome editing has made the technology more efficient, precise, and flexible than ever before. A new report published by the National Academy of Sciences and National Academy of Medicine, “Human Genome Editing: Science, Ethics and Governance,” explores important questions regarding human application of genome editing and offers principles for governing these technologies. 

“The area of genome editing technology holds great potential in advancing science and improving human health, as we can offer cures and prevention to devastating genetic diseases, such as Huntington’s and sickle cell,” said Victor Dzau, M.D., president of the National Academy of Medicine and Research!America board member. The speed at which these technologies are being developed and applied has led many policymakers and stakeholders to express concern about whether appropriate systems are in place to expand the use of genome editing and engage the public, Dzau added.

The report discusses challenges such as balancing potential benefits with unintended risks, governing the use of genome editing, incorporating societal values into clinical applications and policy decisions, and respecting the inevitable differences across nations and cultures that will shape how and whether to use these new technologies. For the full report, click here.   

AIRI Legislative Champion Awards

The Association of Independent Research Institutes (AIRI), in collaboration with its member institutes the Stowers Institute for Medical Research, the Oklahoma Medical Research Foundation, the Van Andel Research Institute and the Fred Hutchinson Cancer Research Center, presents the AIRI Legislative Champion Awards in recognition of Members of Congress who have demonstrated leadership in enhancing the biomedical research enterprise and supporting priorities important to biomedical researchers.

This year, the awards honor Senator Roy Blunt (R-MO) and Representative Tom Cole (R-OK) for their efforts to increase funding at the National Institutes of Health; Senator Jim Inhofe (R-OK), Senator James Lankford (R-OK), and Representative Steve Russell (R-OK) for their efforts to raise the micro-purchase threshold; and Senator Patty Murray (D-WA) and Representative Fred Upton (R-MI) for leading passage of the 21st Century Cures Act, which includes additional funds for NIH.

“With the support of the AIRI Legislative Champions, we were able to achieve significant advances for biomedical research. Significant progress has included increased NIH funding coupled with decreased regulatory burden, advances that are necessary for our scientists to continue their important work,” said Cary Thomas, AIRI president and CIO, The Scripps Research Institute. For more information, visit www.airi.org.

In the News

Media Matters

Advocacy Awards

Mary Woolley, President and CEO

 

A News-Journal (Wilmington, DE) article about former Vice President Joe Biden’s recent accolades highlighted Research!America’s Advocacy Awards dinner and quoted Research!America president and CEO, Mary Woolley about his leadership with the cancer moonshot initiative.

 

 

March for ScienceRush Holt, Ph.D.

In a Science article about the March for Science on April 22 in Washington, D.C., Research!America is mentioned as one of the event partners. Woolley was featured in The Bio Report podcast about the importance of scientists engaging with non-scientists and speaking up for research.

Research!America board member Rush Holt, Ph.D., CEO, American Association for the Advancement of Science, was quoted in a BBC News  report and other articles about the March for Science.

Opioid Abuse

Georges Benjamin, M.D.

 

Research!America board member Georges Benjamin, M.D., director of the American Public Health Association, was quoted in a Modern Healthcare article about the future of the White House's Office of National Drug Control Policy and the Administration’s plans for addressing the opioid epidemic.

 

 

21st Century Cures Act

Woolley penned an op-ed for the CollabRx blog about the positive impact of the 21st Century Cures Act. “The bi-partisan 21st Century Cures Act is grounded in a commitment to assuring that our nation’s research ecosystem has the capacity to accelerate the pace at which safe and effective medical advances reach patients.”

E. Albert Reece, M.D.

Vaccine Research

An article in Health Canal highlighted the results of a study published in the Proceedings of the National Academy of Sciences (PNAS) conducted by University of Maryland School of Medicine and the National Institute of Allergy and Infectious Diseases researchers about an experimental malaria vaccine that protected healthy subjects from infection. Research!America board member and University of Maryland School of Medicine dean, E. Albert ReeceM.D., said the vaccine has the potential to save millions of lives.

Drug Approval Process

POLITICO Pro and Inside Health Policy featured Research!America’s statement about President Donald Trump’s joint address to Congress and his remarks regarding the FDA and the drug approval process.

Heart Disease

Nancy Brown

Nancy Brown, CEO of the American Heart Association and Research!America board member, was quoted in a UPI article about AHA’s Go Red for Women’s participation in New York Fashion Week to raise awareness of women’s heart disease.

 

 

 

Health PolicyMark McClellan, M.D., Ph.D.

In a Healthcare IT News article, Research!America board member Mark McClellan, M.D., Ph.D., and director, Duke-Robert J. Margolis, MD, Center for Health Policy, Duke University talked about ways health IT could better meet the needs of patients and doctors during a fireside chat at the Healthcare Information and Management Systems Society conference.

Media Contacts

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We have health challenges in this country that science will provide answers for if given the chance and we haven't given science that opportunity
Mary Woolley, President and CEO, Research!America