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

Joseph Biden and Kathy Bates Urge Advocates to Redouble Efforts for Research at 21st Annual Advocacy Awards Dinner

Joe BidenHonorees at Research!America’s 21st Annual Advocacy Awards Dinner on Wednesday, March 15 in Washington, D.C. exemplify the steadfast commitment of advocates for research in defeating disease and strengthening our nation’s preeminence in science and innovation.

Joe Biden, 47th Vice President of the United States, was presented with the Gordon and Llura Gund Leadership Award for leading the White House Cancer Moonshot Taskforce and The Biden Foundation’s cancer initiative. In his remarks, Biden said now is the time to redouble our efforts to fight cancer. “We can make sure many more chronic diseases don’t cost you your life, but only if we break down barriers. I see the day a patient is given the right therapy the first time when they are diagnosed.  I see the day when prevention is more effective, and where care is personalized and more effective with less side effects.”

Anthony S. Fauci, M.D., director of the National Institute of Allergy and Infectious Diseases, received the Legacy Award for his tireless work to prevent, diagnose and treat infectious and immune-mediated diseases. “I’m entirely grateful to have been put into this position and to have been witness to and to have played a relatively small part of this extraordinary story of biomedical research,” he said in his acceptance speech.

Award-winning actress Kathy Bates, Lymphatic Education & Research Network (LE&RN) spokesperson, was the recipient of the Isadore Rosenfeld Award for Impact on Public Opinion. Bates said she is a lymphedema and lymphatic research advocate not for herself, but for the millions of people living with lymphedema.(L to R) Sen. Lamar Alexander, The Hon. Michael Castle

Senator Lamar Alexander (R-TN) was presented with the Edwin C. Whitehead Award for Medical Research Advocacy. In a video acceptance speech, Sen. Alexander said, “Congress has been a little slow on finding areas they can agree on, but one thing we can agree on is the importance of biomedical research.” Sen. Alexander was instrumental in leading passage of the 21st Century Cures Act in the Senate. “I look forward to continuing my work with my Senate colleagues to help drive research discoveries.” Research!America Chair The Hon. Michael Castle presented the award to Sen. Alexander at his office on Capitol Hill March 22.

Other honorees included 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 received the Geoffrey Beene Builders of Science Award for his leadership as president and director of the Fred Hutchinson Cancer Research Center from 1997–2010. Phillip Sharp, Ph.D., Nobel Laureate and Institute Professor at the Massachusetts Institute of Technology, received the Raymond and Beverly Sackler Award for Sustained National Leadership for  advancing cancer research. The Paul G. Rogers Distinguished Organization Advocacy Award was presented to The Lupus Foundation of America (LFA). Susan Manzi, M.D., MPH, co-founder and director of the Lupus Center of Excellence, and Allie Gutshall, patient advocate and volunteer for LFA, accepted the award on the Foundation’s behalf. 

View videos of the awardees and visit our Flickr page to see a photo gallery of the evening. For a special insert of the 2017 Advocacy Awards dinner and honorees, click here

Advocates Discuss Need for Funding at Research!America’s Annual Meeting

Rep. David McKinleyMedical research not only benefits the health of individuals, it benefits communities and the local economy, said Rep. David McKinley (R-WV-01) during Research!America’s 28th Annual Meeting of Members on Wednesday, March 15 in Washington, D.C. “We know that the NIH supports over 400,000 jobs across America. Every year NIH writes grants for [scientists and institutions across the country]. That’s significant.”

In her remarks, award-winning actress and Lymphatic Education & Research Network (LE&RN) spokesperson Kathy Bates stressed the importance of research in tackling lymphedema, a chronic and often-misdiagnosed disease of the lymphatic system that causes painful and disfiguring swelling throughout the body. She also called on medical schools to spend more time teaching students about the lymphatic system.

Lymphedema, which affects 10 million Americans – more than MS, muscular dystrophy, ALS, Parkinson’s and AIDS combined – can put sufferers at risk for other conditions like the bacterial skin infection cellulitis. Although there’s currently no cure for lymphedema, treatment includes wrapping the affected areas in compression garments. Bates urged Congress to pass a bill that would help cover the cost of those garments.

The meeting also featured a panel discussion about lupus research featuring Allie Gutshall, a patient advocate and Lupus Foundation of America volunteer, Sue Dillon, Ph.D., global therapeutic head at Janssen R&D, and Christopher Collins, M.D., a rheumatologist at MedStar Washington Hospital Center.

“Fifty percent of lupus patients go on disability within three years of their diagnosis,” Collins said. He called for increased investments to support new drug development to help more patients remain in the workforce.

Dillon said Janssen is structured in a way that has basic researchers working side-by-side with clinical researchers, which streamlines the process of translating new science into “new drugs or new possibilities.” 

To view a video of the meeting, click here

Federal Policy Update

There is still a strong chance that Congress will pass an FY17 omnibus bill rather than resort to continued flat-funding under a year-long continuing resolution (CR). We understand that the pending FY17 omnibus includes a $2 billion increase for NIH, as well as increases for CDC, NSF and FDA.

As for FY18, President Trump released his “skinny budget” blueprint which proposes cuts to NIH and other research agencies. It also recommends elimination of the Fogarty International Center at NIH, and AHRQ would be incorporated into the Institutes. Additionally, the proposal would reduce the federal government’s financial stake in FDA and cut the budget line for “Other Agencies” -- which includes NSF -- by nearly 10%.

The opioid crisis remains a major focus for both the White House and Congress. Recently, the House Appropriations Committee held a hearing regarding the federal response to the crisis. The President has established a task force charged with accelerating our nation’s offensive against this public health threat.

Scott Gottlieb, M.D., has been nominated to serve as FDA Commissioner. The Senate HELP Committee held a hearing on Dr. Gottlieb’s nomination on April 5.  The Committee is expected to vote on Dr. Gottlieb’s nomination during the last week in April or in early May.

The House and Senate have convened several FDA hearings to consider the FDA user fee reauthorization bills. Members of Congress are working to pass these bills expeditiously; FDA estimates that between 30% and 70% of employees could receive Reduction in Force (RIF) notices if the bills are not signed into law by July 31

Science, Not Silence

On Saturday, April 22, the March for Science will take place in more than 400 cities across the globe to celebrate the many scientific advances that have improved the health and well-being of people worldwide. Research!America will be on the ground participating in the Washington, D.C. event, and some of the satellite marches in Los Angeles, CA, Oklahoma City, OK and Salt Lake City, UT. 

“The March for Science event in Washington, D.C., along with similar activities across the country and around the world, 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,” said Research!America President and CEO, Mary Woolley.

Research!America – along with dozens of other organizations, including many of our members – is a March for Science partner and continues to play an active role in spreading the word about the importance of using evidence-based science to shape policy decisions that affect us all. We have written letters in publications across the country calling on those who care about the health and prosperity of America to get engaged and participate in the March for Science. We urge you to do the same.

For more information about the upcoming March for Science, click here.

Policy Session at the AACR Annual Meeting Highlights Importance of Research

Proposed budget cuts to medical research have raised concerns among cancer research advocates who participated in the American Association of Cancer Research Annual Meeting on April 3. The policy session’s keynote speaker Joe Biden, 47th Vice President of the United States, said it’s time to double down on research, not undercut progress. “We can fundamentally change the prospects and promise of life for tens of millions of people around the world,” he said.

The session titled The Beau Biden Cancer Moonshot: Progress and Promise included leaders from government, academia, industry and patient advocacy groups for a discussion about progress with the initiative.

Panelist Rep. Kevin Yoder (R-KS-03) said, “Cancer knows no political party and knows no region. It affects every street and every cul-de-sac in America and therefore it affects every member of Congress and their constituents.” He added that it is helpful for policymakers to hear personal stories from patient groups, what they went through and why research matters.  For scientists, Yoder said it is important to hear about the exciting research being conducted and explain what is holding their work back.

Other panelists included Douglas Lowy, M.D., acting director, National Cancer Institute Michael Caligiuri, M.D., AACR president-elect, Elizabeth Jaffee, M.D., AACR incoming president-elect, Elaine Chao, Secretary of Transportation, Richard Pazdur, M.D., director, FDA Oncology Center of Excellence and Fran Drescher, actress and founder of Cancer Schmancer. AACR president Nancy Davidson, M.D., moderated the discussion.

Clinical Research Achievement Awards

Opioid addiction, lung disease, asthma and prostate cancer research are among those being recognized with The Clinical Research Forum's Top Ten Clinical Research Achievement Awards. The annual competition seeks to identify major advances resulting from the nation's investment in research to benefit the health and welfare of its citizens. This year’s award ceremony will be held on Tuesday, April 18 at the National Press Club in Washington, D.C.

The awards shine a spotlight on innovative, ground-breaking research from some of our nation's most prestigious academic institutions and medical centers, including a number of Research!America Alliance Members.

Award recipients are working on new and promising treatments in the following areas: environmental exposures and asthma; treating opioid addiction; lung disease treatment; prostate cancer; rheumatoid arthritis treatment; evaluating hospital performance; atherosclerosis in communities; essential tremor therapy; autoimmune disease therapy; and cesarean section infection prevention.

For more information on the award recipients and to RSVP for the ceremony, visit clinicalresearchforum.org

Action Alert

Pass an FY17 Budget

Instead of completing work on an updated budget for fiscal year 2017 (FY17) before 2016 ended, Congress passed a temporary stop-gap or continuing resolution (CR) that flat-funds government until April 28, 2017. A draft FY17 “omnibus” spending bill that would direct more funding to NIH-funded research and other key research and public health priorities sits waiting for further congressional action. Members of Congress have indicated they are nearing the finish line on this legislation, which needs to be signed into law by midnight on the 28th or the government will shut down. 

Let them know you support their efforts to get the job done! Take action now: http://bit.ly/2nPEIWA.

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 march NEWSLETTER.

2017 Advocacy Awards

AdvaMed (Advanced Medical Technology Association)

American Association of Cancer Institutes

Battelle

Celgene Corporation

Deloitte

Geoffrey Beene Foundation

Global Alzheimer’s Platform Foundation

Pfizer Inc

PhRMA

Shire

Staglin Family Vineyard

Stand Up To Cancer

UsAgainstAlzheimer’s

Weill Cornell Medicine

Capitol Hill Briefing on Oral Health

Colgate-Palmolive Co.

Oral Health Research Fact Sheets

Colgate-Palmolive Co.

Program Support

The Kavli Foundation

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

SPECIAL THANKS TO NEW AND RENEWING RESEARCH!AMERICA ALLIANCE MEMBERS

New Members

George Washington University School of Medicine and Health Sciences

Huntington Medical Research Institutes

University of Maryland School of Public Health

Renewing Members

Alzheimer’s Association

American Association for the Advancement of Science

American College of Sports Medicine

American Society for Nutrition

Association for Psychological Science

Biotechnology Innovation Organization

Buck Institute for Research on Aging

California Institute for Regenerative Medicine

Cleveland State University

Duke University School of Nursing

Emory Woodruff Health Sciences Research- School of Medicine and Yerkes Primate Center

Fred Hutchinson Cancer Research Center

Gladstone Institutes

Global Liver Institute

Harris Search Associates

Hydrocephalus Association

Medical University of South Carolina

Melanoma Research Alliance

North American Vascular Biology Organization

Oral Health America

Orthopaedic Research Society

Pfizer Inc

Regeneron                       

The Rockefeller University

The Smith-Kettlewell Eye Research Institute

Spectrum Science Communications

University of California Davis School of Medicine

The University of Chicago Pritzker School of Medicine

University of Michigan

The University of Texas Health Science Center at Houston

Vietnam Veterans of America

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

Regular Features

President's Letter

Mary Woolley, President and CEOPresident Trump’s so-called “skinny budget” for the 2018 fiscal year proposes major cuts to our nation’s health research agencies, among other program cuts designed to shift dollars to defense. Another wave of proposed cuts to the still-unresolved fiscal 2017 budget has also been released. “Proposed” is a key word here, since it is the Congress, not the President, that determines spending. (More often than not, over the last three decades, presidents have proposed cuts in science budgets, only to see the Congress allocate more support to science.)  All signals are that this President’s budget is not being warmly received on Capitol Hill, but that doesn’t mean we can afford to dismiss it. The proposed cuts are large and the accompanying language begs the question, “why should the government pay for research?”  

Our answer is clear: the public should pay because research is a public good. It is like defense in that regard. By my math, the U.S. spent roughly $645.3 billion to defend our nation last year, and about a fraction as much ($33.5 billion) to defend our health. If you agree that research is a public good, this is the time to call your elected representatives. Say ‘no’ to the Trump budget cuts for science!  And say 'yes' to the March for Science on April 22.

Member Spotlight: Lung Cancer Alliance

Founded: 1995

Location: Washington, D.C.

Mission: Saving lives, advancing research and changing health policy by empowering those living with and at risk for lung cancer.

Laurie Fenton Ambrose

Lung Cancer Alliance (LCA) is the leading and highest rated nonprofit organization dedicated to fighting lung cancer in the nation. Since 1995, we have played a critical role in every major advance – changing how we support, talk about, detect and treat the disease – and turning those impacted into survivors. Using a science-based, strategic approach, our vision is to triple the number of survivors over the next decade. Reaching this goal requires a collaborative effort that links transformative early detection and treatment research, patient and provider services, and changes to health policies that increase research funding and ensure access to high quality and affordable care.

Since moving to Washington, D.C., over a decade ago, Lung Cancer Alliance’s (LCA) core focus has been to improve outcomes for people diagnosed with lung cancer.  Our goals are three-fold: (1) provide personalized support services to address our communities’ unique needs; (2) increase and advance research that fills in gaps and accelerates breakthroughs; (3) devise more coordinated, comprehensive federal plans of action that ensure access to high quality and affordable care.

With over 220,000 Americans diagnosed with lung cancer each year and close to 160,000 dying from the disease annually as well as a long held stigma that has contributed to a stagnation in survival rates and federal research funding, it is easy to understand why LCA’s health policy work has played such a groundbreaking role.    

Lung Cancer Alliance has seen advocacy gains on several fronts to help move the needle in the fight against lung cancer including working to establish the first-ever dedicated federal research funding pipeline for the disease in 2008 through the Congressionally Directed Medical Research Programs (CDMRP) totaling over $120 million to date, enacting legislation that requires NCI to give increased priority to lung cancer research strategies and spearheading the 10-year long effort to secure lung cancer screening as a fully covered preventive service for the millions at high risk for the disease.

“In order to improve survivorship for those impacted by this terrible disease, increased federal funding is crucial for early detection and treatment research to improve our health care delivery system,” said Laurie Fenton Ambrose, President & CEO of LCA. “Life-saving work needs strength in numbers and Research!America gives us valuable support to advance this effort.”

Lung Cancer Alliance will remain the leading advocacy voice for early detection and treatment research at both the regulatory and legislative level to further provide care and support for patients and those at risk. Whether working with Congress through the Congressional Lung Cancer Caucus or participating in further innovative research initiatives, LCA aims to continue elevating the voice of the lung cancer community by devising policy strategies that sustain federal research funding, support accelerated drug approval processes and more personalized research strategies, prevent barriers to access to high-quality and affordable care and enable collaboration on research endeavors to change the status quo by bringing the most promising treatments to patients sooner. And, lastly, Lung Cancer Alliance will further efforts, begun over 5 years ago, to expand the responsible implementation of lung cancer screening best practices in communities across the country. 

“Research!America’s work helps ‘put gas in our tank’ as it lays the foundation for collaborations with other stakeholder groups who value increased funding for research efforts that impact public health,” said Fenton Ambrose. “Their partnership provides avenues to amplify our collective voices to truly make a difference on issues that matter to all of us.”  

From Washington

Precision Medicine in Action

(L to R) Laurie McGinley; Roy Baynes, M.D., Ph.D.; William Nelson, M.D., Ph.D.; Glenn Dranoff, M.D.; Elizabeth Jaffee, M.D.; Margaret AndersonThe idea of manipulating a patient’s immune response to target cancer dates back a century, but only recently has the technology to apply it become available, said Glenn Dranoff, M.D., global head of exploratory immuno-oncology, Novartis, during a discussion hosted by Johns Hopkins Medicine on March 8 in Washington, D.C. Panelists discussed precision medicine as it relates to cost, communication, research, and health care delivery. 

Dranoff pointed to immunotherapy to treat melanoma, which can achieve 10 years survival through as little as four treatments, as an example of how far precision medicine research has come.

Antony Rosen, M.D., vice dean for research, Johns Hopkins Medicine, said there are challenges to advancing precision medicine with insufficient funding, noting a 20% decline in the National Institutes of Health (NIH) budget over the past 15 years. With President Trump’s proposed deep cuts to NIH funding for both FY17 and FY18, those challenges could be amplified, he added.

“We are concerned about the prospect of budget cuts at NIH because if you don’t have the NIH providing seed corn for this research, then you don’t reap the benefits,” said Margaret Anderson, executive director of FasterCures. “The urgency of this work as it applies to real life patients cannot be underscored enough.”

To learn more about the Johns Hopkins Medicine precision medicine initiative, visit http://bit.ly/2o32mS1

Achieving an Optimal Health Care System

The U.S. is falling behind other developed countries in health care access, efficiency and equity. Key findings in the National Academy of Medicine’s (NAM) report Vital Directions for Health and Health Care Initiative were discussed at a briefing March 21 at the NAM in Washington, D.C. “We should ensure the care we deliver improves outcomes for everyone, is affordable and works synergistically across sectors to improve health,” said Victor Dzau, M.D., president of NAM and Research!America board member and one of the report’s authors.

The Vital Directions report series outlines key priorities for action and essential infrastructure needs to advance health and health care.

“This isn’t a political disagreement alone, [health care] is an economic and humanitarian imperative,” said The Hon. Michael Leavitt, former Utah Governor and former Secretary of the U.S. Department of Health and Human Services, a report author.

The latest report’s recommendations include using consistent core metrics to guide progress, modernizing workforce skills, accelerating real-word evidence, and forging innovative clinical research processes and partnerships.

The Hon. Thomas Daschle, former U.S. Senator, and report author emphasized that efforts to improve health outcomes receive bipartisan support and “where there’s broad bipartisan support on health issues, there’s permanency.”

The event also featured remarks from members of the steering committee including Mark McClellan, M.D., Ph.D., MPH, director, Duke-Margolis Health Policy Center and Research!America board member, and Sheila Burke, adjunct lecturer, Harvard Kennedy School.  Learn more at nam.edu/VitalDirections

Are We Ready for a Pandemic?

Threats are no longer limited to weapons of wars; they include widespread disease outbreaks. Panelists at a briefing hosted by the Bipartisan Policy Center (BPC) agree that pandemics pose a major threat to national security.

“Over the last 15 years, the U.S. and the world has faced anthrax, SARS, avian influenza, pandemic influenza, Ebola and Zika,” said Anand Parekh, M.D., chief medical advisor, BPC, at the forum held March 28 in Washington, D.C. “As opposed to other threats, microbes know no borders.”

“We don’t have as clear of a picture of the profound impact” of airborne pathogens, said The Hon. Tom Daschle, former U.S. Senate Majority Leader and BPC cofounder. “We need exclamation points to put forth a sense of urgency and then develop a plan of action.”

The Hon. Judd Gregg referenced Project BioShield, signed into law by President George W. Bush in 2004, as an archetype for pandemic preparedness. The 10-year program allocated $5.6 billion to accelerate research and develop medicines to protect Americans against possible chemical, biological, radiological, or nuclear attack. In 2013, the program was re-authorized through 2018 but its longer-term fate under Trump’s administration is unclear.

“There is no bigger threat to our nation than a biological attack or pandemic flu,” Gregg said. “This is a national security issue and once it’s presented in those terms to this Administration, we will be able to move forward.”

Click here to view a video of the event.

Pfizer CEO on Drug Development and Innovation

Ian ReadThrough medical innovation, fatal diseases like HIV are now manageable, chronic conditions, vaccines are preventing childhood illnesses, and immunotherapies are helping to fight cancer, said Pfizer CEO Ian Read during a March 23 luncheon at the National Press Club.

Read said basic research funded by the National Institutes of Health is “a critical step” but noted the pharmaceutical industry’s important role in translating those findings into effective treatments for patients, a sometimes-difficult journey that can take 10 to 15 years.

“Developing a new medicine on average costs $2.6 billion,” Read said. “But less than 12% of the potential medicines that make it to phase 1 clinical trials get approved by the Food and Drug Administration.”

The FDA “has been conditioned by society and Congress to be extremely conservative,” he said, adding the agency should take more risks in the drug development process to help speed things up.

Read said market competition – not additional government regulations or price controls – is key to lowering drug prices. He called for federal tax and trade policies that protect American intellectual property and more investment in manufacturing. Such moves, he said, would boost productivity in the pharmaceutical industry, leading to more drugs on the market and ultimately driving down costs for consumers.

In the News

Media Matters

Advocacy Awards Dinner

Research!America’s 2017 Advocacy Awards Dinner, which honored former Vice President Joe Biden, Kathy Bates and leaders in medical and health advocacy, was highlighted in The Hill, The Washington Post, The Huffington Post, Roll Call, and WJLA-TV (Washington, D.C.) as well as in numerous broadcast and online news sites.

New Board Leaders and DirectorsThe Hon. Michael Castle

An article about Research!America’s new board leadership and directors The Hon. Michael Castle, The Hon. Kweisi Mfume, The Hon. Bart Gordon and Susan M. Fitzpatrick Ph.D. was featured in The Washington Business Journal.

President Trump’s Budget Proposal

The Hon. John E. Porter

Research!America Chair Emeritus The Hon. John E. Porter’s comments about President Trump’s proposed budget cuts to research were included in an article in The Cancer Letter. Mr. Porter and Research!America board member Susan M. Fitzpatrick Ph.D., president of the James S. McDonnell Foundation, were quoted in the Chronicle of Higher Education about the impact of potential budget cuts to academic researchers.

Georges Benjamin, M.D.Research!America board member Georges Benjamin, M.D., director of the American Public Health Association, was quoted in a Los Angeles Times article about the significance of the suggested budget cuts to public health.

The New York Times and The Fiscal Times quoted Research!America President and CEO Mary Woolley, about proposed budget cuts to the National Institutes of Health.

Ellie Dehoney, Research!America's VP of policy and advocacy, was quoted in NBC News and the Washington Examiner about the repercussions of potential budget cuts to the Agency for Healthcare Research and Quality (AHRQ) and the NIH Fogarty International Center. Dehoney also weighed in on the overall impact of the cuts to research in Xconomy.

Research!America VP of Communications Suzanne Ffolkes was quoted in The Scientist about the urgent need for scientists to engage with policymakers and the public. The Washington Business Journal quoted Ffolkes about the potential burden of cuts to research institutions across the country.

Multiple news outlets featured Research!America’s statement on Trump’s FY17 budget proposal including Inside Health Policy, Chemical & Engineering News, FDA Week, and Bloomberg BNA.

Letters to the Editor

Mary Woolley, President and CEOWoolley’s letters to the editor calling for stronger investments in research and public health and  were published in The Wisconsin State Journal, The Tennessean, and The Mercury News (San Jose, CA).

Investments in Research             

Data from Research!America’s Investment Report was included in a Science magazine article about basic research funding in the U.S. 

Public Investments in Universities

Mary Hendrix, Ph.D.Shepherd University President and Research!America board member Mary Hendrix, Ph.D., described the return of public investments in university programs in an op-ed published in The Journal newspaper.

Media Contacts

Suzanne Ffolkes
VP Communications
571-482-2710

Anna Briseño
Senior Manager of Communications
571-482-2737

Luck shouldn't play a role in why I'm alive.
Laurie MacCaskill, a seven-year pancreatic cancer survivor