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 Deist, editor@researchamerica.org

In This Issue of The Research Advocate: february 2018

From Research!America

Sen. Susan Collins and Dr. Atul Gawande to be Honored at Research!America’s Advocacy Awards Dinner March 14

Senator Susan Collins (R-ME) will receive the Edwin C. Whitehead Award for Medical Research Advocacy for her leadership in increasing federal funding for medical research, particularly Alzheimer’s disease research, at Research!America’s Advocacy Awards Dinner on March 14 in Washington, D.C. at the Mellon Auditorium.

“If we are to improve the health of Americans and the quality of their lives, we must continue to invest in areas like biomedical research,” said Senator Collins. “Research!America is dedicated to informing the public of the benefits of medical research and empowering members of the research community. I will continue to fight for increased funding to combat debilitating diseases like Alzheimer’s, diabetes, cancer, and so many other diseases that affect the lives of every American family. I am deeply honored to receive this award.”

As the Chairman of the Senate Aging Committee and the founder and co-chair of the Senate Alzheimer’s Task Force and the Senate Diabetes Caucus, Senator Collins’ top priorities have been working to support caregivers and increase federal funding for biomedical research.

Atul Gawande, M.D., MPH, surgeon, writer, and public health researcher and advocate, will be honored with the Isadore Rosenfeld Award for Impact on Public Opinion  for dramatically raising the profile of health systems research, and promoting evidence-based research to improve health care delivery. Dr. Rosenfeld is widely recognized as one of the country’s preeminent physicians and a renowned advocate for medical and health research.

“Dr. Rosenfeld’s writing and advocacy has made a significant impact on public understanding of health and health care that I have hoped to build upon,” said Dr. Gawande. “The next era of advancement in human well-being will only be possible if we pay attention to how illness and healing really work—if we commit to working through the messy reality of how science and people’s lives intersect.”

Dr. Gawande practices general and endocrine surgery at Brigham and Women’s Hospital, and is a staff writer for The New Yorker magazine, publishing influential essays on the science and practice of medicine, from people’s individual experiences to the effects of national policy. He is professor at the Harvard T.H. Chan School of Public Health and Harvard Medical School. He is also executive director of Ariadne Labs, a joint center for health systems innovation working to save lives and reduce suffering for people everywhere through simple, scalable solutions that improve the delivery of care. 

Other 2018 Research!America Advocacy Award honorees are The Honorable John Edward Porter, Research!America Chair Emeritus, who will receive the Legacy Award; Roger I. Glass, M.D., Ph.D., director of the Fogarty International Center and associate director for international research at the National Institutes of Health; Shari and Garen Staglin, co-founders, One Mind and founders, Staglin Family Vineyard; Peter J. Hotez, M.D., Ph.D., dean of the National School of Tropical Medicine at Baylor College of Medicine where he is also professor of pediatrics and molecular virology and microbiology; and The EveryLife Foundation for Rare Diseases.

Janssen Pharmaceutical Companies of Johnson and Johnson is the lead sponsor of the event. For more information about the Advocacy Awards Dinner, visit www.researchamerica.org/advocacy_awards

Americans Agree Science and Technology Could Strengthen U.S. Infrastructure

In his State of the Union speech, President Trump outlined a plan to rebuild the nation’s “crumbling” infrastructure. Science and technology should be assigned a high priority by the president to get the job done, according to a strong majority of Americans (81%) in a new national survey commissioned by Research!America. Results were consistently high across the political spectrum -- 86% of Republicans, 85% of Democrats, 72% of Independents said it is important for the president to prioritize science and technology to strengthen our nation’s infrastructure.  And more than half of Americans (58%) agree that scientists should play a major role in shaping policy for roads, bridges and infrastructure.   

“R&D is the infrastructure underlying job-creating, life-saving innovation,” said Mary Woolley, president and CEO, Research!America. “Achieving success in [U.S. infrastructure] requires bolstering the budgets of federal science agencies, incentivizing public-private partnerships, and placing a greater emphasis on STEM education.”

Nearly 80% of respondents say it is important for the federal government to support incentives for private sector investment in new treatments and cures, and 67% agree that public policies should be based on the best available science.

The survey includes new data related to global competitiveness, opioids, and mental health research. To view the full survey, click here.

Federal Policy Update

Congress opened 2018 with just over two weeks to finalize fiscal year 2018 (FY18) appropriations before the Continuing Resolution (CR) approved in December reached its January 19 expiration date. Budget negotiations were hindered by disagreements on immigration and other issues, leading to the first government shutdown since 2013. Although Congress was able to agree on the fourth CR of FY18, these stopgap measures and the threat of shutdown continue to hobble scientific and medical progress. On a positive note, the current CR, set to expire on February 8, did include a two-year suspension of the medical device tax retroactive to January 1.

Absent from the latest CR is a deal to increase the caps for defense and non-defense discretionary (NDD) spending. Though we are cautiously optimistic that a deal to raise the caps is close, we are taking nothing for granted. With partners from across the science community, we relaunched our #RaiseTheCaps campaign by running print and digital ads in several inside-the-beltway outlets and in targeted areas across the country.

On January 19, the president extended, through April 23, the declaration establishing the opioid epidemic as a public health emergency. We sent a letter to the president and congressional leadership urging them to commit greater resources, including investment to fill key research gaps, so our nation can achieve progress more quickly against this deadly public health threat.

On January 24, the Senate voted to confirm Alex Azar as the next secretary of the Department of Health and Human Services. The new Secretary will likely face pressure to address drug pricing. Research!America will continue to monitor these developments closely and support efforts that address bad actors without jeopardizing life and cost-saving medical innovation.

A series of reports this month highlighted the global implications of treating R&D investment as an afterthought. The U.S. fell out of the top ten on the Bloomberg Innovation Index list of “innovative countries,” fell behind China for the first time in the production of scientific publications, and, according to the National Science Board, will fall behind China in federal science R&D investment within the next two years. As tense budget talks continue, and with the president’s budget set to be released in mid-February, we are making the case that our nation’s global R&D leadership is more than a rank, it’s a strategic imperative for continued prosperity, security, and medical progress. 

Elevating Medical Research in an Election Year

Mary Woolley at the University of Hawai'iResearch!America president and CEO Mary Woolley urged scientists to get involved in the upcoming election year; attend a town hall, vote in upcoming primaries and urge candidates to voice support for science and innovation. The remarks were part of presentations supported by the Kavli Foundation at the Association of Medical School Microbiology and Immunology Chairs (AMSMIC) Annual Meeting, the John A. Burns School of Medicine at the University of Hawaii, and Sanford Research South Dakota.

Woolley emphasized the importance of forging relationships with policymakers and the public. A strong majority of Americans (81%) say it’s important for scientists to inform elected officials about their research and its impact on society, according to a new survey commissioned by Research!America.

And yet the survey shows scientists and research institutions continue to be largely invisible to society.  Only 16% of respondents say they can name a living scientist and less than a quarter know that medical research is conducted in all 50 states. Woolley shared resources, messaging and tools for researchers to engage with their communities. 

U.S. Leads in R&D Investments, But Innovation Ranking Declines

The U.S. has dropped out of the top 10 most innovative countries, according to the 2018 Bloomberg Innovation Index. South Korea and Sweden retained their No. 1 and No. 2 rankings.

Bloomberg has been publishing its innovation index for six years, scoring countries across seven equally weighted categories, including research and development spending, and concentration of high-tech public companies.

The U.S. dropped to 11th place from 9th place last year, in part due to losses in the education-efficiency category, which measures the number of new science and engineering graduates in the labor force. The U.S. also lost points in value-added manufacturing, defined as the balance between inputs in the manufacturing process and the value of results.

Research and development (R&D) expenditures reflect a nation's commitment to expanding capabilities in science and technology, which in turn drives innovation. According to the National Science Foundation’s Science & Engineering Indicators 2018 report, China has increased its spending on R&D by about 18% each year since 2000 compared to 4% annual increases in the U.S.

NSF’s report, released every two years, shows the U.S. invests the most in R&D, attracts the most venture capital, awards the most advanced degrees, provides the most business, financial and information services, and is the largest producer in high-technology manufacturing sectors. But China continues to have the most aggressive R&D growth, accounting for nearly one-third of the global increase in R&D spending from 2000 to 2015.

For more on Bloomberg’s innovation ranking report, click here.  For NSF’s Science & Engineering Indicators 2018 report, click here.   

Urge Congress to #RaiseTheCaps

Research!America and several scientific organizations partnered for another joint Raise the Caps ad and social media campaign in mid-January to amplify messages to Congress about the importance of lifting spending caps to support the nation’s scientific enterprise.

The Bipartisan Budget Act of 2015 provided relief from sequestration -- automatic spending cuts -- for two years, but the budget caps are now back in full force, jeopardizing scientific research and innovation. Advocates urged Congress to negotiate a bipartisan budget deal to raise the budget caps for FY18 and FY19 for both defense and non-defense spending.

During the January campaign, the, #RaiseTheCaps on Twitter generated more than 5 million impressions, an increase of 3 million impressions compared to the November Raise the Caps campaign. The digital ad campaign ran in The Hill, Daily Caller, washingtonexaminer.com, and weeklystandard.com Jan. 10 - 17. The print ad appeared in POLITICO, CQ Roll Call, Washington Examiner and Weekly Standard Jan. 10, 11 and 16.

Campaign partners included the American Association for the Advancement of Science, American Association for Dental Research, American Educational Research Association, American Geophysical Union, American Physical Society, American Society for Microbiology, Federation of American Societies for Experimental Biology, National Association for Biomedical Research, OSA-The Optical Society, Society for Neuroscience, and Supporters of Agricultural Research Foundation.

For more information, visit www.researchamerica.org/raisethecaps

Shepherd University Joins Initiative to Address Opioid Crisis

To address the growing opioid crisis, academia, law enforcement, faith-based, health and community organizations have joined forces to launch The Martinsburg Initiative (TMI) -- an innovative approach to assessing, identifying and eliminating the basic causes of drug abuse. The initiative is spearheaded by the Martinsburg Police Department, Shepherd University, Berkeley County Schools, and the Washington/Baltimore High Intensity Drug Trafficking Area (HIDTA) program. The initiative’s primary objective will focus on opiate, and specifically heroin, prevention.

“Shepherd University is proud to participate in The Martinsburg Initiative, an innovative program to address drug prevention, involving the collaborative partnership of law enforcement, community schools and our institution,” said Research!America board member Mary J.C. Hendrix, Ph.D., president, Shepherd University. “This is the right time and the right place to make a difference that will benefit current and future generation(s) and serve as a transformational model to guide others through challenging situations related to the opioid crisis.”

The Martinsburg Initiative is applying the pioneering science of Dr. Vincent Felitti’s CDC-Kaiser Permanente Adverse Childhood Experiences (ACE) Study, which has found that adverse childhood experiences, like exposure to drugs and alcohol, can have a major impact on the physical and mental developmental of children.

TMI is built upon the unique relationship that exists between police, schools and families. The initiative is focusing on schools as the center for anti-drug programs, community organization and learning. The initiative’s leaders hope that a new sense of belonging, community pride and self-respect will positively impact children, strengthen families and empower communities. For more information, visit http://www.martinsburgpd.org/martinsburg-initiative.  

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 January NEWSLETTER.

Raise the Caps Campaign

American Association for the Advancement of Science

American Physical Society

American Society for Microbiology

Federation of American Societies for Experimental Biology

International and American Association for Dental Research

National Association for Biomedical Research

The Optical Society

SoAR Foundation

Society for Neuroscience

2018 Advocacy Awards

American Association for the Advancement of Science

American Heart Association

American Medical Association

Amgen

Mary Hendrix

Northwestern University

Program Support

American Medical Association

Amgen

Howard Hughes Medical Institute

2018 National Health Research Forum

Amgen

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

SPECIAL THANKS TO RENEWING RESEARCH!AMERICA ALLIANCE MEMBERS 

Alliance for Academic Internal Medicine

American Academy of Nursing

American Academy of Pediatrics

American Brain Coalition

American Federation for Medical Research

American Medical Informatics Association

American Public Health Association

Association of Anatomy, Cell Biology and Neurobiology Chairpersons

Association of Professors of Human and Medical Genetics

Biotechnology Innovation Organization

Blue Ridge Institute for Medical Research

Cancer Support Community

EveryLife Foundation for Rare Diseases

Johns Hopkins Medicine

Lymphatic Education & Research Network

Memorial Sloan-Kettering Cancer Center

Merck & Co., Inc.

National Disease Research Interchange

Orthopaedic Research Society

Partners HealthCare System

Spina Bifida Association of America

Texas Biomedical Research Institute

The American Society for Cell Biology

The American Society of Hematology

The American Society of Tropical Medicine and Hygiene

The Association for Research in Vision and Ophthalmology

The University of Arizona

University of Nevada, Las Vegas School of Dental Medicine

As of February 1, 2018

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

Regular Features

President's Letter

Mary Woolley, President and CEOFebruary marks the kick off of federal budget negotiations for fiscal year 2019 (FY19) that begins on October 1, 2018.  It’s hard to have a conversation about FY19 when there has been no decision on FY18 as continuing resolutions (CRs) have brought Congress to a contentious standstill on the budget as on so many other issues. The president’s FY19 budget, meanwhile, is expected to be released on February 12. It is not likely to be friendly, spending-wise, to federal research agencies.  

All things considered, advocacy in this confusing situation is more than a little frustrating but that is not a reason to step back from public outreach.  Our Raise the Caps social media and advocacy campaign makes it easy to be engaged, and engagement is what is called for by those who are stakeholders in research and innovation that drive health, prosperity and security.  

Research does not speak for itself; advocates are essential. Once a year, Research!America honors exceptional advocates — always an inspirational event. Read more about our awardees and join us on March 14 for our Advocacy Awards Dinner! 

Member Spotlight: The National Headache Foundation

Founded: 1970

Location: Chicago, IL

Mission: To cure headache and end its pain and suffering.

Timothy Smith, M.D., R.Ph.The National Headache Foundation (NHF) is a 501 c-3 non-profit foundation which seeks to improve the lives of individuals with migraine and other severe headache disorders through education, research, and advocacy. The NHF was established in 1970 by one of the world’s preeminent headache clinicians, Dr. Seymour Diamond, and others who recognized the need for a patient organization in headache. Since its inception, the NHF has consistently distilled and amplified the voice of the patient in all matters related to headache care, research, and understanding. 

The National Headache Foundation’s primary focus has long been the funding, performance, and publication of research on the diagnosis and treatment of severe headache disorders. Specifically, over the years, the NHF has provided over $1.8 million through 212 research grants to physicians and scientists working in headache medicine. 

NHF-funded projects have been proof of concept studies, attracting over $600,000 of subsequent funding from the National Institutes of Health to continue research on those initial discoveries. Recently, the NHF has narrowed its research focus to prioritize and fund patient-centric research which improves the translation of scientific and bench discoveries into real world headache management success that can be impactful in the short run. 

One particular area of interest has been research on the barriers to care and their impact on patients’ lives and productivity. 

“We feel research that leverages the voice of the patient in research design and performance is of utmost importance,” said NHF Vice President Timothy Smith, M.D., R.Ph.

Besides research, the NHF also provides numerous resources and services for headache patients, their families, and health care professionals, providing opportunities for education, engagement and building community. 

NHF’s website is the most trusted and visited headache web presence on the internet, providing extensive and comprehensive information on migraine and serious headache disorders. The “Health Care Provider Finder” is another popular patient service. A new effort, recently deployed, is the community-building activity through which NHF engages directly with patients via its website, email, Facebook, and Twitter to solicit and share stories, opinions, preferences and descriptions of unmet need, and to focus the spotlight on opportunities to improve care. 

Established in 2003 as a service to patients across the U.S., the Certificate of Added Qualification in Headache Medicine is an NHF credential which may be obtained by healthcare professionals with expertise in headache management. An overarching goal is to grow our community of engaged advocates and champions to more than 30,000 individuals. Currently, NHF is over half way to that goal.

“We find great synergy between the missions of the NHF and Research!America. Better funding is crucial to the patients we serve, and we are dedicated to encouraging and securing meaningful new development in the area of patient-centered headache research,” said Dr. Smith. 

For more information, visit www.headaches.org

From Washington

Looking Forward: FDA's 2018 Strategic Policy Roadmap

Scott Gottlieb, M.D.Addressing the nation’s opioid epidemic, improving health care access, and strengthening the Food and Drug Administration (FDA)’s workforce and risk management framework are some of the goals put forward by FDA Commissioner Scott Gottlieb, M.D., in the agency’s 2018 Strategic Policy Roadmap.

To help tackle opioid addiction – which kills 91 Americans every day – FDA vows to ensure better prescription practices, support medication-assisted treatment for those addicted (in addition to counseling), and increase efforts to curb the illegal shipment of opioids into the U.S.

The agency also plans to streamline the process through which generic drugs enter the market, fueling competition, in an effort to lower drug prices.

To better keep pace with new research in gene- and cell-based technologies, targeted medicines and medical devices, FDA will evaluate its current hiring and pay practices to make sure it attracts and maintains a workforce robust enough to ensure the safety of new therapies while getting them to Americans as quickly as possible.

“These goals – and the work we do together in achieving them – go to the heart of our mission of advancing and protecting public health, while maintaining our commitment to the scientific standards that make FDA a recognized global leader, and a gold standard for product review,” Gottlieb said.

Click here to learn more. 

Parkinson's Disease: A Modern Pandemic

The number of people with Parkinson’s disease (PD) in the U.S. has doubled over the last 25 years and it is predicted to double again in the next 25 years, according to the Gates Foundation. “If Parkinson’s was an infectious condition, this would be a pandemic,” said Ray Dorsey, M.D., neurologist, University of Rochester Medical Center. 

Dorsey was among the panelists at the “Parkinson's Disease: A Modern Pandemic” briefing in Washington, D.C. on January 17, sponsored by the Congressional Caucus on Parkinson’s Disease and The Michael J. Fox Foundation and Parkinson's Foundation.

Myra Hirschhorn, patient advocate, told her story as a care partner during her late husband’s experience with Parkinson’s. She emphasized that PD not only has devastating effects physically and emotionally on the person coping with the disease, but it also impacts the lives of the patient’s lovde ones. 

Ms. Hirschhorn emphasized a strong need for Congress to appropriate funding for the National Institutes of Health (NIH), and funding for the Centers for Disease Control and Prevention (CDC)’s data collection bill within 21st Century Cures to help patients and researchers better determine the prevalence patterns of PD. “We need better information,” she added.

James Beck, Ph.D., chief scientific officer, Parkinson's Foundation, and adjunct assistant professor, New York University School of Medicine, said breakthroughs in PD require concerted efforts over time and it is time to re-emphasize basic research.

“The moonshot did not happen overnight,” said Dr. Beck. “Increased spending will kick-start innovative ideas and help scientists build bridges to better treatments and cures for PD.”

Congressional Caucus on Parkinson's Disease co-chair Representative Gus Bilirakis (R-FL) also voiced his support for progress in Parkinson’s disease research. 

In the News

Media Matters

Supporting Research for Health

Mary Woolley, President and CEO

Research!America President and CEO Mary Woolley was the featured guest on Hawai'i Public Radio’s “The Body Show.” In the wide-ranging interview, Woolley urged listeners to advocate for research for health and ask candidates campaigning during the midterms about their support for research and innovation.

 

 

Science AdvisorsRush D. Holt, Ph.D.

In a Mother Jones article about science advisory committees designated to provide scientific and technical expertise to federal agencies, Research!America board member Rush D. Holt, Ph.D., CEO, American Association for the Advancement of Science (AAAS), said the committees are not being fully utilized and without their expert advice, an evidence-based scientific perspective is not represented in policymaking. 

Research Funding and Advocacy

Woolley was quoted in an article in The Cancer Letter about the continuing resolution and the impact it has on the National Institutes of Health.

Research!America Vice President of Policy and Advocacy Ellie Dehoney was quoted in a Bloomberg BNA about the negative impact of stalled FY18 budget talks on federal worker morale and research.

In a Chemical & Engineering News article about science research advocacy in the Trump era Research!America Vice President of Communications Suzanne Ffolkes talked about the scientific organizations motivations to increase engagement.

Physician Health

Victor Dzau, M.D.The Washington Post published a letter-to-the-editor authored by Research!America board member Victor Dzau, M.D., president of the National Academy of Medicine (NAM) and chair of Action Collaborative on Clinician Well-Being and Resilience network, and co-chairs Darrell Kirch, M.D.,  and Thomas Nasca, M.D. about the networks commitment to reversing trends in clinician burnout.

 

 

Opioid EpidemicGeorges Benjamin, M.D.

In a Morning Call (Allentown, Pa.) article about a statewide opioid disaster declaration Research!America board member Georges Benjamin, M.D., executive director, American Public Health Association (APHA), called for more funding to combat the opioid epidemic.

Lucinda Maine, Ph.D., R.Ph.Research!America board member Lucinda Maine, Ph.D., R.Ph., executive vice president and CEO, American Association of Colleges of Pharmacy (AACP), was quoted in a Modern Medicine article about prescription disposal kits to help curb opioid addiction.

 

 

 

Public Health Funding

Dehoney was quoted in The Hill about the impact of short-term spending bills on public health agencies.

Health Care CostMark McClellan, M.D., Ph.D.

Research!America board member Mark McClellanM.D., Ph.D., director, Duke-Robert J. Margolis MD Center for Health Policy, Duke University appeared in a New York Times op-ed about tackling the high costs of treating chronic diseases. 

 

Media Contacts

Suzanne Ffolkes
VP Communications
571-482-2710

Anna Briseño
Senior Manager of Communications
571-482-2737

America’s economic destiny lies in innovation, technology, science and research.
The Honorable John E. Porter