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

Research!America Embarks on 29th Year Advocating for Research

The new year brings exciting opportunities to further Research!America’s accomplishments advocating for public and private sector research, and working with our member organizations to engage the 115th Congress and new Administration. As Research!America embarks on its 29th year advocating for medical, health and scientific research, and policies in support of medical innovation, we reflect on our achievements in 2016 and begin the work of advancing priorities for this year.

Research!America worked closely with research stakeholders to increase bipartisan congressional support for the 21st Century Cures Act which was signed into law December 13, a major win for patients who will benefit from the accelerated pace of research and development. The measure is a critical step towards removing barriers to innovation, securing funding for major initiatives like the Cancer Moonshot and precision medicine, and incorporating the patient voice in drug development.

Campaign for Cures, Research!America’s national voter education initiative, focused on elevating medical and health research into the national conversation during the election season through on-the-ground events, extensive media outreach, social media and grassroots engagement, and digital advertising. Research!America held events and commissioned state-based surveys in Louisiana, Georgia and Ohio. A number of advocacy training workshops were held throughout the year to help researchers become stronger advocates for their work.

Public Health Thank You Day heightened awareness of the important work of public health professionals and the need for a public health emergency fund to improve our nation’s response to outbreaks like Zika, with a record number of organizations and individuals joining on social media.

In 2017, Research!America will step up efforts to increase funding for the National Institutes of Health, the Food and Drug Administration, the Centers for Disease Control and Prevention, the National Science Foundation and the Agency for Healthcare Research and Quality. In collaboration with members and partners, the alliance will work to strengthen our global leadership in research and ensure its role in shoring up our nation’s infrastructure. Other priorities include advancing the implementation of the 21st Century Cures Act, repealing the medical device tax, sustaining the Public Health and Prevention Fund, lifting sequestration caps that could stifle research and development and slow medical progress, ensuring timely passage of the prescription drug and medical device user fee bills, and promoting a pro-innovation tax and policy climate.

Putting Hearts Before Minds to Connect with Policymakers

Mary Woolley, President and CEO“We need everyone who cares about science to get involved, now more than ever” in public outreach and education, said Mary Woolley, president and CEO of Research!America during a presentation to researchers, students and academics at the University of Connecticut Health Center on December 16.

The presentation, titled “Your Role in Changing Hearts and Minds for Science,” was part of a seminar series organized by the Connecticut Institute for Clinical and Translational Science (CICATS) and supported by a grant from the Kavli Foundation. CICATS is a partnership between the University of Connecticut, regional hospitals, state agencies, and community health care organizations.

According to a recent Research!America survey, 80% of Americans say it is important for elected officials to listen to scientists.

“Sadly, public policies often aren’t based on science,” said Woolley, adding that the reason for this is a lack of outreach on the part of scientists to elected officials. “If [lawmakers] don’t know who the science community is among their constituents, then why would they listen to them?”

Woolley discussed the importance of building relationships with the new Administration and Congress,  urging scientists to find common ground with elected officials, such as the fact that both work to serve the public interest. “Engage emotions, put hearts before minds to make a connection” with policymakers, said Woolley, noting that scientists often are not trained to communicate that emotional aspect of their work.

Congressional passage of the 21st Century Cures bill “is proof that advocacy works,” Woolley said. She added that advocacy can take a long time to yield results, but that shouldn’t dissuade scientists from increasing their engagement with policymakers.

To watch a recording of the presentation, visit http://bit.ly/CICATS.

Federal Policy Update

2017 is already a-buzz with activity as a soon-to-be inaugurated President and new Congress begin to execute what is sure to be a jam-packed policy agenda. Members of Congress were sworn in for the 115th Congress on January 3, 2017, and on January 4 the Senate agreed by a largely party-line vote (51-48) to begin debate on the anticipated repeal of Obamacare.  

The repeal is housed in a fiscal year 2017 (FY17) budget resolution because votes associated with this type of vehicle require only a simple majority, rather than a 66-vote super majority, to pass the Senate. After being considered by the Senate, the resolution is expected to pass the House without amendment. There remains little consensus in either the House or Senate on the timeframe for, or nature of an Obamacare replacement.

Funding for most of the government is currently operating on a Continuing Resolution (CR) until April 28, 2017. To fuel American priorities, it is imperative that Congress complete the FY17 appropriations process by passing the bills negotiated last year, rather than defaulting to a full-year CR for FY17. In terms of FY18, it is unclear whether the President-elect plans to introduce a budget. What is clear is that unless a deal is struck to lift the sequestration caps, our nation faces austerity-level funding insufficient to safeguard and advance the priorities of the American people. 

Congressman Tom Price (R-GA-06) has been nominated by President-elect Trump for Secretary of Health and Human Services and his first confirmation hearing, which will be conducted by the Senate HELP Committee, is scheduled for January 18. Research!America submitted suggested questions to HELP Committee Chairman Alexander (R-TN) and Ranking Member Murray (D-WA).

On January 3, Rep. Erik Paulsen (R-MN-03) and Rep. Ron Kind (D-WI-03) introduced the Protect Medical Innovation Act, to permanently repeal the 2.3% medical device excise tax. Health care efficiency is increasingly tied to more targeted and accurate diagnostics. Eliminating this tax will encourage investment and fuel faster medical progress.  

Action Alert

Protect the Prevention and Public Health Fund 

The Prevention and Public Health Fund (PPHF) was specifically set up to ensure that agencies like the Centers for Disease Control and Prevention (CDC) can fight for the health of Americans. PPHF dollars help seniors avoid debilitating and costly injuries, protect children from unsafe drinking water, and pre-empt dangerous disease outbreaks. As priorities shift in the new Congress, the future of this lifesaving fund is in question. Because the PPHF was authorized through the Affordable Care Act (ACA) it is under threat. Take action now, click here.

Research Advocates Dedicate New Paul G. Rogers Conference Room

(L to R) Mary Woolley, Pippy Rogers, Becky Rogers, Eleanor Rogers Welch, Romney Rogers, Ginny Rogers, Laing Rogers Sisto, The Honorable John Porter, Candace RogersFriends, family and former colleagues paid tribute to the late Honorable Paul G. Rogers during a dedication ceremony for the conference room named in his honor at Research!America’s new office in Arlington, Virginia.

“He made a difference in my life in a way that few people have,” said Research!America president and CEO Mary Woolley during the event held December 8. “I treasure his memory every day.”

Rogers, who served in Congress from 1955 to 1979, was known for his important legislative achievements, which included the Clean Air Act and the National Cancer Act.The Honorable Dan Mica

The Honorable Dan Mica, who succeeded Rogers in Congress, admired his ability to work across the political aisle to get things done and described him as someone who “liked to help people.”

Widely known as “Mr. Health” by his colleagues, Rogers’ advocacy work earned him many awards, including the Albert Lasker Award for Public Service. He chaired Research!America from 1996 until his passing in 2005, and his daughter Laing Rogers Sisto maintains his legacy as a member of Research!America’s board.

“Without research, there is no hope,” one of Rogers’ most cited quotes, is now emblazoned along the glass wall of the conference room and serves as a reminder of the important work ahead in research advocacy.

Some of his accomplishments are at risk right now but there are people who will step up, and we are among them,” Woolley said. “We’ll make sure we don’t squander the progress we’ve already made. And, in fact, we’ll build on it.”

The Paul G. Rogers conference room was made possible by a gift from the Rogers Family Foundation.

2017 Dr. Paul Janssen Award Call for Nominations

Nominations are now being accepted for the 2017 Dr. Paul Janssen Award for Biomedical Research. The Award was launched by Johnson & Johnson in 2004 to honor Dr. Paul Janssen, widely recognized as one of the most productive pharmaceutical scientists of the 20th century. The award celebrates innovative scientists in academia, industry or government whose achievements in the field of biomedicine or medical technology have made, or have strong potential to make, a measurable impact on human health. Submissions will be accepted until February 28, 2017. Learn more and submit a nomination at www.pauljanssenaward.com.

January is Glaucoma Awareness Month

The National Institutes of Health's National Eye Institute (NEI) is encouraging advocacy groups to raise awareness about glaucoma during the month of January. Glaucoma, a group of eye diseases that damages the optic nerve and is a leading cause of permanent vision loss and blindness in the United States, affects an estimated three million Americans, according to the Glaucoma Research Foundation.

NEI’s new Keep Your Vision in the Future: Glaucoma Toolkit, which includes a PowerPoint presentation, speaker’s guide, Glaucoma Eye-Q test PDF, and a fact sheet, is a resource for research and advocacy organizations that wish to plan their own customized awareness events. NEI also has a comprehensive list of sample Twitter and Facebook posts, and website banners that can be used to raise awareness through social media and blogs.

To learn more about glaucoma and how you can raise awareness for it, click here. 

Both Progress and Setbacks in Latest Health Rankings Report

A decline in the number of smokers, uninsured Americans, and preventable hospitalizations among Medicare beneficiaries is undercut by a sharp rise in obesity and drug- and heart-related deaths, according to United Health Foundation’s latest America’s Health Rankings report.

The 2016 report shows a 9% increase in drug deaths over the past five years, and a 4% increase in drug deaths over the past year alone nationwide. This is in part attributed to a growing opioid epidemic that lawmakers on both sides of the political aisle hope to stem with the new 21st Century Cures Act. States will receive $1 billion in grants over the next two years for drug abuse prevention and treatment programs.

Cardiovascular deaths also increased, for the first time in the report’s 27-year history, from 250.8 to 251.7 deaths per 100,000, and adult obesity rates increased by 157%.

“We have made important strides across the country against public health challenges; however, we are at a crossroads between a healthier future as a nation and a future in which troubling public health measurements become increasingly common,” said Reed Tuckson, M.D., external senior medical adviser to United Health Foundation. “Of particular concern is the first-time rise in cardiovascular deaths, despite all the medical advances in this area.”

The report ranked Hawaii as the healthiest state for the fifth straight year, while Mississippi replaced Louisiana as the least healthy state.

To read the full report, 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 NOVEMBER NEWSLETTER.

2016 Post-Election Briefing

Zogby Analytics

2017 Advocacy Awards

Amgen

Biotechnology Innovation Organization

Massachusetts Institute of Technology

Partners HealthCare System

Rosenfeld Heart Foundation

Mary Woolley

Capitol Hill Briefing on the Innovation Ecosystem

Lilly

Grant of Support

The Dana Foundation

Raising Voices for Science Campaign

Johnson & Johnson

Science Policy Fellowship Program

Howard Hughes Medical Institute

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

SPECIAL THANKS TO NEW AND RENEWING RESEARCH!AMERICA ALLIANCE MEMBERS

New Member

The Patrick Risha CTE Awareness Foundation

Renewing Members

Alliance for Aging Research

American Brain Coalition

American College of Clinical Pharmacy

American College of Clinical Pharmacy Research Institute

American Diabetes Association

American Society for Pharmacology and Experimental Therapeutics

American Society for Virology

The American Society of Cell Biology

Association of Anatomy, Cell Biology and Neurobiology Chairpersons

Association of Schools and Colleges of Optometry

Battelle

Biophysical Society

Brigham and Women’s Hospital

Columbia University

Emory University Rollins School of Public Health

Foundation for the National Institutes of Health

The Johns Hopkins University School of Nursing

International & American Association for Dental Research

Massachusetts General Hospital

Memorial Sloan-Kettering Cancer Center

Mount Sinai Medical Center/Icahn School of Medicine at Mount Sinai

National Medical Association

National Multiple Sclerosis Society

Nell Hodgson Woodruff School of Nursing, Emory University

New York University

Partners HealthCare System

Perelman School of Medicine at the University of Pennsylvania

Progeria Research Foundation

Society for Neuroscience

University at Buffalo School of Medicine and Biomedical Sciences

University of Arizona

University of Connecticut Health Center

University of Nevada, Las Vegas School of Dental Medicine

University of Pittsburgh School of Medicine

Washington University Center for Health Economics and Policy

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

Regular Features

President's Letter

Mary Woolley, President and CEOWashington is up and running full steam ahead in the new year, and so is Research!America, embarking on our 29th year! It's important, as the new Congress acts on its priorities and President-elect Trump and his team further articulate theirs, that advocates for research act, as well. This is no time to sit back and watch! Transitions are a time of high aspiration and great possibility and that is the frame we reference in advocacy: investing in research and innovation is how the United States will achieve crucial national goals like better individual and national health and economic competitiveness.  

Research!America board chair The Hon. John Porter and I emphasized these points in our recent op-ed in The Huffington Post. We say, in part: Americans say they want and expect medical progress to continue. They’ve placed their trust in the President-elect and Congress to make it happen: give us what we all deserve, a unified, positive approach to science and innovation to help, as the President-elect has stated, make our lives “better, safer and more prosperous.”

Member Spotlight: Gift of Life Donor Program

Founded: 1974

Location: Philadelphia, PA

Mission: Gift of Life Donor Program coordinates life-saving organ and life-enhancing tissue transplants in the eastern half of PA, southern NJ and DE, while supporting donor families who have generously chosen to give others a second chance at life through organ donation.

Howard M. Nathan

Gift of Life Donor Program, founded in 1974, is one of the oldest and largest organ procurement organizations (OPO) in the United States. Founded in 1974 by the Greater Delaware Valley Society of Transplant Surgeons, Gift of Life is part of the nationwide organ and tissue sharing network run by the United Network for Organ Sharing (UNOS). Gift of Life coordinates life-enhancing tissue transplants for area residents who are in need of corneas for sight-restoring procedures, as well as skin, tissue and bone to repair injuries. The program has helped save nearly 42,000 lives through organ donation and has enhanced approximately 600,000 lives through tissue donation over the past 42 years. 

Currently in the United States, more than 119,000 men, women and children are waiting for a life-saving organ transplant.  In Gift of Life Donor Program’s region – the eastern half of Pennsylvania, southern New Jersey and Delaware – over 5,600 individuals are waiting for a second chance at life. 

Gift of Life, founded in 1974, is one of the oldest and largest organ procurement organizations (OPO) in the United States.  The non-profit, federally designated organization is one of 58 OPOs in the country, and has helped to save nearly 42,000 lives through organ donation and has enhanced approximately 600,000 lives through tissue donation over the past 42 years.  Gift of Life is fortunate to serve the most giving region in the country, and has consistently ranked as the leading OPO in the nation for its successful coordination of organ donors.  

“Gift of Life works 24/7, 365 days a year in partnership with the area’s 15 transplant centers and 131 acute care hospitals to save lives through organ donation.” said Howard M. Nathan, president & CEO, Gift of Life Donor Program.  “We understand the importance of basic and clinical research because it has been the basis for successful advances in the field of transplantation. For example, research in immunology and pharmacology has provided organ transplant recipients with advanced anti-rejection medications that have allowed them to live long, healthy lives post-transplant.”

“Another example was in 1995, when Gift of Life pioneered a technique to coordinate organ donation after circulatory death (DCD), and supported research showing that DCD was an option for providing viable organs to save more lives.  (DCD is when a donor dies from loss of circulatory and respiratory function, instead of brain death.)  Gift of Life then educated many other OPOs in the U.S. about DCD, which has now increased the donor pool nearly 20%, saving the lives of nearly 3,000 people in 2016 alone.” said Nathan.

Gift of Life encourages individuals to register as organ and tissue donors.  Registering as a donor is a heroic and selfless decision.  It changes and saves lives, impacting not only the person in need of a transplant, but their families and the community as a whole. There’s no better gift than giving the gift of life. 

Organ and tissue donors can save and benefit the lives of up to 70 people.  One organ donor can give a second chance at life to up to eight people.  One person can donate their kidneys, pancreas, liver, lungs, heart and intestines. Through tissue donation, a donor can enhance the lives of countless others. Tissue donation includes bone donations to repair limbs, skin donations to heal burn patients and heart valve donations to repair life-threatening heart defects.  Donors can also donate their corneas, which can give the gift of sight to two recipients. 

Help give hope to those waiting and register today! To register as a donor visit www.donatelife.net. For more information about the Gift of Life Donor Program, click here

 

 

From Washington

2016’s Medical and Health Research Highlights

The Zika virus outbreak is listed among the top public health issues tackled by the Centers for Disease Control and Prevention (CDC) in the agency’s year in review report. Researchers worked diligently to develop tests that could more quickly detect the disease, particularly among pregnant women, to minimize the risk of related microcephaly in newborns. The CDC’s overview of its top public health undertakings in 2016 also included efforts to prevent antibiotic resistance in both healthcare settings and communities, better detect and stem the spread of pathogens such as Legionnaires’ disease, continue decreasing smoking rates, and slow the rise in prescription opioid overdoses which took the lives of more than 15,000 Americans in 2015 alone.

The National Institutes of Health (NIH) remained committed to making clinical advances in blood pressure management, age-related macular degeneration, and malaria in 2016, and the Food and Drug Administration (FDA) approved novel drug applications at a record-breaking pace. 

To view Research!America's blog post featuring a review of 2016’s medical and health research highlights from the CDC, NIH, FDA, National Science Foundation, and Agency for Healthcare Research and Quality, click here.

Addressing the Challenges of Diabetes

(L to R) Karen Kmetik, Paul Baker, Celeste James, Kenneth Thorpe, Barbara Linder, M.D., Sarah Ferris

Diabetes is on the rise across the United States, posing a significant health risk for millions of Americans. Currently the seventh leading cause of death in the country, it could affect as many as one in three adults by 2050. On December 6, The Hill newspaper convened lawmakers, medical experts, and patient advocates for a briefing on diabetes to address the challenge it poses to society, the economy and the health care industry.  

Representative Tom Reed (R-NY), co-chair, Congressional Diabetes Caucus, shared the personal story of his son who was diagnosed with type-1 diabetes at four-years-old. “It’s a 24/7, 365 days a year disease, and we must continue to raise awareness for diabetes.” The 21st Century Cures Act, he said, is an important step forward to finding new treatments for diseases like diabetes. Representative Robin Kelly (D-IL), chair, Congressional Black Caucus Health BrainTrust, agreed, emphasizing that more investments are needed across the health care ecosystem, from research to prevention programs. She also said diversifying the workforce and addressing health disparities must be a priority. 

“Hispanics are twice as likely to be diagnosed with diabetes compared to non-Hispanic Whites,” said Paul Baker, senior director for programs, National Alliance for Hispanic Health. Language proficiency, transportation, childcare and mixed immigration statuses are challenges faced by communities disproportionately affected by diabetes, he added.

Evidence-based care coordination is critical to addressing disease management, said Ken Thorpe, chairman, Partnership to Fight Chronic Disease. “Many patients with diabetes have other additional chronic health conditions, and we have to focus on whole person care.”

Stephen J. Ubl, president and CEO, PhRMA and Scott Whitaker, president and CEO, AdvaMed, described industry breakthroughs that help manage diabetes, such as continuous glucose monitors that integrate with smartphones, providing real-time alerts if an individual’s blood sugar is too high or too low. “These technologies can change the life of a child and a parent,” said Whitaker.

Other panelists included: Karen Kmetik, group vice president, American Medical Association; Barbara Linder, M.D., senior advisor, Division of Diabetes, Endocrinology, and Metabolic Diseases, NIH, National Institute of Diabetes and Digestive Kidney Diseases; and Celeste James, director, community health initiatives, Kaiser Permanente Mid-Atlantic.

Biomedical Innovation in a New Administration

Biomedical innovation is vital to America’s health and economic well-being. The new Administration has the opportunity to lead in research and innovation, and construct policies to maintain the country’s strength and productivity, says Margaret Anderson, executive director of FasterCures. The organization convened leaders from the research and patient communities on December 8 for the webinar, “Opportunities for the Next Administration to Advance Biomedical Innovation.”

Anderson, moderator of the discussion, introduced the Rx for Innovation project, which developed a set of recommendations for the incoming Administration to improve the biomedical innovation system. The report synthesized interviews of 152 thought leaders across the biomedical research ecosystem, providing recommendations across seven categories: system-level action, patient centricity, regulatory resources, translational science, clinical trials, data and access to innovation.

Guest speaker Patrick White, president of ACT for NIH, discussed the importance of funding for the National Institutes of Health. “We must make sure that NIH has steady and sustained growth. We must enable scientific risk-taking, and assure them there is continued, growing and sustained funding which encourages people to take risks,” said White.

Mary Dwight, senior vice president for policy and patient programs, Cystic Fibrosis Foundation, added “We would not have the treatment options we have today without NIH-funded basic research on the cystic fibrosis gene.” 

Anderson described how citizens could be more engaged in the regulatory process. “The hashtag #HealthCitizenship is a movement to mobilize citizens, whether they’re healthy or not, to engage with the innovation system in new and important ways,” she said. In addition to regulatory decision-making, patient centricity can also be an important tool for assessing the value of a medical product.

Dwight shared that the collection of post-approval real-world evidence has shown very positive outcomes for new cystic fibrosis therapies and increased access for patients, but noted, “We’re not done until everyone can benefit from innovation.”

In the News

Media Matters

Ensuring Research For Health in a New Administration

The Hon. John E. Porter

 

The Hon. John E. Porter Research!America Chair and Mary Woolley, President and CEO, co-authored an op-ed for The Huffington Post urging President-elect Donald Trump to prioritize medical progress and encouraging the scientific community to engage with the incoming Administration. “Scientists and advocates for research can play an active role in influencing the trajectory of our enterprise, but we cannot do it on the sidelines. The time is now to engage the Trump transition team, newly elected members of Congress and incumbents.”

 

Evidence-Based Decision Making Rush Holt, Ph.D.

Research!America board member Rush Holt, Ph.D., CEO, American Association for the Advancement of Science (AAAS), authored an op-ed for the Star-Ledger (NJ), underscoring the importance of science to inform public policy.

Nancy Brown

E-Cigarettes Deterrence

Nancy Brown, CEO of the American Heart Association and Research!America board member, discussed the importance of talking to kids about the health dangers of e-cigarettes in a blog article published in The Huffington Post

 

Reporting on Health DisparitiesReed V. Tuckson, M.D.

Research!America emeritus board director and managing director of Tuckson Health Connections, LLC, Reed V. Tuckson, M.D., was quoted in a Baltimore Sun article about the Urban Health Media project for local students to study journalism and health disparities.

21st Century Cures Act  

Following passage of the 21st Century Cures bill in the Senate, Woolley was quoted in Buzzfeed News, Genetic Engineering & Biotechnology News, and The Los Angeles Times. The Post-Bulletin (Rochester, MN) published a letter-to-the-editor penned by Woolley applauding the 21st Century Cures Act provisions that support young scientists and the Food and Drug Administration. Prior to the bill’s passage, Ellie Dehoney, Research!America's VP of policy and advocacy, was quoted on NPR News –Marketplace and POLITICO Pro supporting provisions that advance research and innovation. 

The Future of Research

In a BloombergBNA article about issues facing the life sciences community in 2017, Woolley was quoted about the policy landscape for research and innovation. “We will be seeing a national conversation about strategy when it comes to science.”

Georges Benjamin, M.D.

Public Health 3.0

Research!America board member Georges Benjamin, M.D., director of the American Public Health Association and Karen DeSalvo, M.D., MPH, M.Sc., Acting Assistant Secretary for Health at the U.S. Department of Health and Human Services, penned a blog post for Health Affairs which featured a blueprint for public health in local communities.

 

Stem Cell ResearchE. Albert Reece, M.D.

In a Medical Xpress article about a randomized clinical study led by researchers at the University of Maryland (UMD) and the University of Miami to determine if adult stem cells benefit children with heart defects, Research!America board member and UMD dean, E. Albert ReeceM.D., was quoted about the study. “This novel therapeutic approach exemplifies how our faculty are unrelenting in their search for new ways to improve the health of some of our tiniest and most vulnerable patients,” he said.

 

 

 

Media Contacts

Suzanne Ffolkes
VP Communications
571-482-2710

Anna Briseño
Communications Manager
571-482-2737

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