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,

From Research!America

Honorees for 2016 Advocacy Awards Announced

The contributions of Research!America’s 2016 Advocacy Awards honorees have transformed medical research, advocacy for research, patient engagement and biotechnology. Their efforts have led to significant advances in cancer and Alzheimer’s research, the development of innovative technology, and created a groundswell of public support to find treatments and a cure for amyotrophic lateral sclerosis (ALS). These honorees will be recognized for their achievements in research advocacy at the Andrew W. Mellon Auditorium in Washington, D.C. on March 16, 2016.

Harold Varmus, M.D., Nobel Laureate and Lewis Thomas University professor, Weill Cornell Medicine will receive the Legacy Award for his research on the genetic basis of cancer. Dr. Varmus has served as the director of the National Cancer Institute, president of Memorial Sloan-Kettering Cancer Center and director of the National Institutes of Health.

Robert Langer, Sc.D., the David H. Koch Institute Professor at MIT, whose research that advanced the practice of medicine and changed the quality of people’s lives, has been selected to receive the Raymond and Beverly Sackler Award for Sustained National LeadershipJohn Noseworthy, M.D., president and CEO, Mayo Clinic, will receive the Geoffrey Beene Builders of Science Award for his leadership in extending the organization’s mission to new populations and efforts to increase the personalization of evidence-based care. 

Trish and George Vradenburg, co-founders, UsAgainstAlzheimer’s (UsA2), will be recognized with the Gordon and Llura Gund Leadership Award for their tireless commitment to transforming how our society talks about and perceives individuals with Alzheimer’s. The Paul G. Rogers Distinguished Organization Advocacy Award will be given to The ALS Association, whose social media phenomenon, The ALS Ice Bucket Challenge,  raised millions of dollars for research to fight the disease.

Lisa Paulsen and The Entertainment Industry Foundation (EIF) will be honored with the Isadore Rosenfeld Award for Impact on Public Opinion. Ms. Paulsen is the president and CEO of EIF, the collective philanthropy for the television and film businesses. Ms. Paulsen and EIF co-founded Stand Up To Cancer (SU2C), through which more than $360 million has been pledged to support collaborative cancer research.    

To learn more about the 20th Annual Advocacy Awards dinner visit

Budget Deal Reached, Appropriators at Work for FY16

Congressional leadership and the Obama administration have worked out a deal to increase the nation’s debt limit and provide an additional $80 billion above the sequestration-level spending caps over two years, split evenly between non-defense and defense programs. Each spending category would receive $25 billion more in fiscal year 2016 (FY16) and $15 billion more in FY17. 

Congress and the White House are now in the process of negotiating a detailed FY16 spending plan over the next month that allocates the additional $50 billion across specific agencies and programs. Research!America will be fighting to ensure this funding boost translates into robust funding for NIH, CDC, AHRQ, FDA and NSF. The budget deal is likely good news for AHRQ, which had previously been slated for termination in the House Labor-HHS appropriations bill and a 35 percent cut in the Senate. The additional nondefense discretionary funding should translate into a FY16 funding level for AHRQ that allows the agency to continue its vital mission of conducting and supporting health services research that makes health care safer and more efficient. 

Under the budget deal, sequestration relief is fully offset by spending cuts and additional revenue.  Some of the “pay-fors” are drawn from other legislation; for example, the deal includes selling off part of the Strategic Petroleum Reserve (SPR), which may preclude its use to fund spending in the Senate transportation bill or the House 21st Century Cures Act. 

While the use of this pay-for may be framed by the media as a setback against the goal of securing mandatory funding for NIH and FDA as part of the House 21st Century Cures and Senate Innovation initiatives, negotiating pay-fors is typically the last step in the process of passing major legislation and the SPR pay-for in HR 6 had already been dismissed by the Senate because of jurisdictional issues. Research!America will continue to push for the inclusion of supplemental funding in the Senate Innovation bill, and in the final House/Senate legislation that is sent to the President to be signed into law. A discussion draft of the Senate Innovation bill is expected this month, which would begin the process of committee consideration before Congress adjourns in December. Once the Senate passes Innovation legislation, the two chambers can begin to conference the House and Senate bills to come to a final agreement.

While repeal of the medical device excise tax is included in the budget reconciliation bill pending in the House, the Senate has not yet considered repeal legislation and securing this policy change before Congress adjourns this year remains an uphill battle. Research!America is continuing to make the case that repealing the device tax is a pragmatic step aligned with the national commitment to faster medical progress and that finding a path to repeal in 2015 should be a bipartisan priority.

Action Alert

Support Research in FY16

Congress reached a two year budget agreement that reduces the negative impact of sequestration, providing additional funding for federal programs. But reaching this deal is just the first step – now Congress must set fiscal year 2016 funding levels for each federal agency and program. Take this opportunity to thank your members of Congress for their work, and advocate for increased funding to advance medical and health research.

Take action now at

Honoring Public Health Heroes

As families gather to mark the Thanksgiving holiday, public health professionals across the country who protect Americans from health threats will be recognized for their efforts. On Monday, November 23, Research!America and leading public health organizations will honor public health workers who are on the frontlines of disease and injury prevention, and their efforts to promote healthy behaviors.

“Thousands of doctors, researchers, nurses and others in the U.S. and around the world dedicate their lives to protecting the public's health from infections and diseases,” said Thomas Frieden, M.D., M.P.H., director of the Centers for Disease Control and Prevention. “Because of their determination to stop the spread of life-threatening viruses and bacteria, to conduct disease prevention research, and to help people make healthier personal choices, we can all live healthier and safer lives. Thank you!"

"The public health workforce safeguards the lives of Americans in many ways – from tracking and combating disease outbreaks, developing and distributing vaccines, preparing us for natural disasters, keeping our food and drinking water safe and our air clean, and so much more," said Georges Benjamin, M.D., executive director of the American Public Health Association (APHA), a Research!America member.

Research!America and Public Health Thank You Day supporters are highlighting public health themes such as oral health, mental health, vaccinations, and milestones in public health during the month of November. Visit to learn more and become a partner. 

Leveraging Public Opinion and Policy to Support Suicide Prevention Research

“Mental health is rightfully receiving significant attention” among the public and policymakers as efforts to increase access to mental health services are pending on Capitol Hill. Mary Woolley, president and CEO of Research!America, discussed policy measures and advocacy for mental health reform at the International Academy of Suicide Research (IASR) and the American Foundation for Suicide Prevention (AFSP), a Research!America member, 2015 International Summit on Suicide Research in New York City on October 11-14.  She said the House and Senate “are trying to move the needle on meaningful mental health reform,” referring to two bills that make mental health treatment more accessible. 

The Summit brought together researchers studying topics ranging from neurobiology and genetics to prevention and intervention. Sessions focused on assessing suicidal behavior, unlocking the genetic basis of suicide, current research on neurobiology and biomarkers, and population-level strategies for suicide prevention.
Woolley noted the importance of garnering support through advocacy and recognized the role of patients in driving policy changes, working shoulder-to-shoulder with those who have personal experiences with mental illness. 

Each year, there are more than 40,000 deaths due to suicide in the U.S. Recent public opinion poll data commissioned by Research!America shows more than half of Americans (54 percent) say public investment in mental health research is not enough, and two-thirds of Americans say it is important for the U.S. to invest public dollars in the prevention of suicide. 

Public Health Professionals Convene for APHA’s Annual Meeting

Public health professionals are encouraged to work with community partners in law enforcement, transportation, environmental services, education, religion and others who can shape policy informed by conversations and analysis. That message, said Georges Benjamin, M.D., was behind the theme of the American Public Health Association’s (APHA) Annual Meeting, Health in All Policies.

Benjamin, executive director of APHA and Research!America board member, welcomed more than 12,000 public health professionals from across the country for the meeting in Chicago from October 31 – November 3 to address topics ranging from gun violence and climate change to health equity.  The meeting focused on how public health agencies and organizations can work with those who are best positioned to create policies and practices that promote healthy communities and environments. 

Mary Woolley, president and CEO of Research!America, presented during a scientific session titled “From biology to policy: Challenges and opportunities to advance the public's health,” which looked at the interconnectedness of science and policy, identifying key challenges hampering the role of science in policy. Referring to public opinion polling that shows few Americans can name a scientist or even any place that research is conducted, Woolley discussed how the invisibility of scientists contributes to an erosion of public trust in science.  She also emphasized the importance for scientists of becoming involved in advocacy to help shape public policy. 

Webinar on AHRQ, Nov. 10

A majority of Americans (78%) say it is important that our nation supports research that focuses on improving how our health care system is functioning, according to national public opinion polling commissioned by Research!America. The Agency for Healthcare Research and Quality (AHRQ) focuses on improving quality of care and decreasing health care costs. AHRQ plays a crucial role in addressing inefficiencies in health care delivery, yet the agency’s achievements and ongoing work are relatively unknown.

AHRQ director Dr. Richard Kronick and Dr. Lisa Simpson, president and CEO of AcademyHealth, will discuss AHRQ’s critically important work in a webinar on Tuesday, November 10, 2015, 1:00 – 1:30pm ET, hosted by Research!America. This interactive program is free to members and supporters.

Please visit to register. 

Campaign for Cures Engages with Candidates

Research!America’s national voter education initiative, Campaign for Cures: Vote for Medical Progress!, is connecting with both Republican and Democratic presidential candidates at local campaign events. The Campaign for Cures (C4C) team was recently on the ground for John Kasich’s town hall in Richmond, VA, and Hillary Clinton’s rally in Alexandria, VA, speaking with the candidates’ supporters about the necessity of investing in research to find cures for deadly diseases such as cancer and Alzheimer’s.  Kasich and Clinton expressed their support for medical research and acknowledged C4C supporters. The team also attended a rally in Washington, DC with Donald Trump and Ted Cruz, and volunteers carried our message to Bernie Sanders’ rally at George Mason University. To increase visibility, we are engaging young scientists and student groups, empowering them with the necessary tools to urge presidential candidates to make medical progress a higher national priority. 

For more information on Campaign for Cures, visit  To become a partner, contact Thayer Surette at

Communicating the Value of Nursing Research

How do you communicate the value of research exploring the use of mobile devices among seniors to improve health outcomes? Participants at a Johns Hopkins University School of Nursing, a Research!America member, science communication workshop on October 8, shared their “elevator” pitches to learn what messages resonate with different audiences including policymakers, media and potential donors. The workshop, led by Research!America, focused on effective communications strategies to engage non-scientists. 

Research!America Vice President of Communications Suzanne Ffolkes invited participants to develop “elevator” speeches about their work which ranged from programs addressing behavioral issues among school students to educating women about the importance of cancer screenings.  

The group also discussed ways to frame the purpose and results of a landmark nursing research study led by Research!America board member, Martha Hill, Ph.D., R.N., dean emerita and professor of nursing at JHU, on reducing high blood pressure among inner-city African-American men. Research!America communications manager Anna Briseno encouraged participants to highlight key points in their elevator pitches including cost savings with certain interventions.

For more information about Research!America science communication workshops contact

Special Thanks to Our Supporters and Renewing Research!America Alliance Members

Research!America Extends Special Thanks to our Supporters who Have Contributed Since the Publication of our October Newsletter 

2015 National Health Research Forum

AdvaMed (Advanced Medical Technology Association)

Investment in Research Saves Lives and Money: Sickle Cell Disease Fact Sheet

Doris Duke Charitable Foundation

Narratives for Medical Innovation Project

Astellas Pharma US, Inc.



Society for Neuroscience

Special Thanks to Renewing Research!America Alliance Members

Renewing Members

AAALAC International 

American Autoimmune Related Diseases Association 

American Cancer Society 

American Society of Clinical Oncology 

American Sociological Association 

Association of Clinical Research Organizations 


Carnegie Mellon University 

Chicago Council on Science and Technology (C2ST) 

Children’s Healthcare of Atlanta 

The Children’s Hospital of Philadelphia 

The Clinical Research Forum 

Citizens United for Research in Epilepsy (CURE) 

EveryLife Foundation for Rare Diseases 

Georgia Research Alliance 

Johnson & Johnson 

Keck School of Medicine of the University of Southern California 

Louisiana State University 

National Down Syndrome Society 

Nell Hodgson Woodruff School of Nursing, Emory University 

New York University

Summa Health System 

University of Colorado Anschutz Medical Campus 

University of Georgia 

University of Nebraska Medical Center College of Dentistry 

Van Andel Research Institute 

Wayne State University

Not yet a member? Join Research!America today at

Regular Features

President's Letter

It is an exciting time to be an advocate for research!  After years of hard work - alongside our many partners - we are seeing a light at the end of the appropriations tunnel.  The bipartisan budget agreement reached last month paves the way for more robust budgets for the        federal science agencies than we have seen in many years. As detailed elsewhere in this newsletter, we are not across the finish line on appropriations quite yet, but the passage of the budget deal, in combination with the promise embodied by the 21st Century Cures Act and the Senate Innovation Initiative, makes me think that my end of year President’s letter will carry the most positive report in a long time.  But meanwhile, we have to remain in the moment.  We can’t let up on advocacy -- please join us in keeping the momentum strong.  Thank you, on behalf of the Research!America board of directors and my talented colleagues, for everything you are doing as a fellow advocate and partner in the on-going effort to make research for health – and science for solutions – a much higher priority for our nation.  

We look forward to honoring outstanding advocates for research at our 20th anniversary   Advocacy Awards Dinner on March 16, 2016.  You can read all about the awardees in this issue.  I urge you to make plans now to join us to salute the people and organizations that are leading the way for us all.  They don’t doubt that advocacy matters, and nor should you!  

Member Spotlight: Shire

Founded: 1986

Location: Lexington, MA

Mission: Enabling people with life-altering conditions to lead better lives.

Shire is a global biopharmaceutical company committed to helping people with life-altering conditions lead better lives. Shire employs more than 5,000 people in nearly 40 countries around the world who carry forward many of the original attributes of its founders -- opportunistic thinking, transparent behavior, a deep commitment to doing what is right and a prevailing concern for the patients and caregivers served by its well-differentiated product lines. The company focuses on developing and delivering innovative medicines and therapies for patients with rare diseases and other specialty conditions, ranging from Hunter syndrome or Fabry disease, to ADHD or ulcerative colitis.

“At Shire, the patient is at the center of everything we do. We are committed to enabling people with life-altering conditions to lead better lives, and feel a responsibility to sustain and develop the kinds of programs that benefit our patients most,” said Phil Vickers, Ph.D., senior vice president and head of research and development at Shire.

Shire focuses on addressing the unique R&D challenges associated with the development of innovative medicines to treat rare diseases and specialty conditions, and provides benefit to patients and their families.  Such therapies can provide very significant health economic benefits to society-- including fewer days spent in hospitals, and decreases in the time that family members need to leave the workplace.

The company has created a patient- and customer-focused culture, which encourages employees to embrace innovation and challenge the status quo. “We are excited about the future and are committed to working with our partners in industry, academia and the non-profit sector to promote research and innovation across the U.S. and the globe,” said Dr. Vickers.

Dr. Vickers sees some challenges to the biomedical research landscape, most importantly a lack of consistent funding and the need for more public-private partnerships. “Support for maintaining and reestablishing strong funding levels at the NIH and across academia is vital,” he emphasized. “Recent scientific advances could form the foundation for incredible advances in the understanding of diseases, and through partnership with biopharma there is a great opportunity to translate basic science into the development of innovative therapies.”

Funding is not the only ingredient necessary, explained Dr. Vickers. Strong intellectual property rights, support for science, technology, engineering and math (STEM) education, and government policies, and a tax code that recognizes the incredible value that research and innovation impart to the economy as a whole, are a few of the important issues that Dr. Vickers says can have a significant impact on the level of investment in biopharmaceutical development. 

 “In working to increase awareness of the benefits of research and innovation, Research!America directly supports our mission to develop innovative therapies to treat rare and specialty conditions,” he said. “It is critical that our elected leaders at the state and national levels understand the importance and value of R&D, both from a patient and economic perspective. Research!America has an important and trusted voice that helps move these conversations forward.”


From Washington

Advances in Precision-Based Cancer Prevention and Detection

This year, 1.6 million Americans will learn they have cancer and nearly 600,000 will lose their lives to the disease. Carolyn Adigé, president and founder of the Prevent Cancer Foundation described the enormous toll of the disease in the Capitol Hill briefing “Cancer 101” on October 27.  

The event, organized by the National Coalition for Cancer Research (NCCR), focused on prevention and early detection research, and the need for more investments in precision medicine.  

“It is very important that we are funding research across the board…researching some of these exciting new areas and technologies that are less well understood,” said NCCR president Wendy Selig. Prevention receives a small fraction of the federal budget, she noted, and the amount invested in prevention research must also increase. 

“Obesity is a risk factor for cancer – only 10% of the general public knows this,” said Clifford Hudis, M.D., chief of the Breast Medicine Service at Memorial Sloan Kettering Cancer Center, a Research!America member. Precision-based interventions in diet and exercise programs, nutraceuticals, and targeted drug therapies are opportunities to reduce obesity rates, he claimed.

Mitchell Schnall, M.D., Ph.D., chairman of radiology at the Perelman School of Medicine at the University of Pennsylvania, a Research!America member, said precision screening for breast cancer can “empower primary care physicians and women” to have discussions to determine the best course of treatment.

Understanding the biology of early-stage cancers is crucial, said Sudhir Srivastava, Ph.D., M.P.H., chief of the cancer biomarkers research group at the National Cancer Institute (NCI). “A big chunk of the iceberg is still unknown,” he added. Other speakers included Daniel Crichton, M.S., manager, principal investigator, NASA Jet Propulsion Laboratory. 

Panelists Discuss the Promise and Challenge of Precision Medicine

Scientific advances are ushering in a new era of precision medicine. This approach makes it possible to account for each patient’s genetics, health history and lifestyle in developing individualized treatments. On October 22, The Hill newspaper hosted a panel discussion on the impact of this emerging field, the challenges to its progress, and how the Precision Medicine Initiative (PMI) fits into the complex research ecosystem.

John Castellani, president and CEO of PhRMA, a Research!America member and sponsor of the event, said that researchers predict a 69 percent increase in the development of personalized medicines over the next five years, and “we must ensure that a clear and transparent regulatory system keeps pace with that science.”

Given the current projections, the Food and Drug Administration (FDA) “must be nimble,” and find a balance where technologies can still evolve rapidly, while continuing to ensure they’re safe and effective, said Elizabeth Mansfield, Ph.D., director of personalized medicine, FDA.

Maintaining data privacy is an important component as patients enroll in the PMI cohort, said Kathy Hudson, Ph.D., deputy director for science, outreach and policy, National Institutes of Health (NIH). Currently, electronic patient records are tied to social security numbers. “If we can use a unique research identifier that doesn’t link individual’s private information to important financial information, we could go a long way to protecting privacy,” she added.  

Other speakers discussed their perspectives on the promises and challenges of precision medicine. Steven Averbuch, M.D., vice president, development, oncology & pharmacodiagnostics, Bristol-Myers Squibb, a Research!America member, emphasized that modernizing the regulatory framework is critical “to implement the science in a healthcare environment,” and collaborations are more important now than ever before.

Alan Balch, Ph.D., CEO, National Patient Advocate Foundation, a Research!America member, and Amy Miller, Ph.D., executive vice president, Personalized Medicine Coalition, described how precision medicine has already changed how we approach certain diseases, including breast cancer, lung cancer and cystic fibrosis. Different facets of the ecosystem from drug development to diagnostics to reimbursement must align to keep pace with the science, they said. 

Policy Priorities for the Rare Disease Community

Ellie Dehoney, vice president of policy & advocacy, Research!America, discussed the critical need for NIH and FDA funding during a briefing, “Innovation for Healthier Americans: Priorities for the Rare Disease Community,” organized by Rare Disease Legislative Advocates (RDLA) on October 8. She asserted that a single research project can be transformative, noting that in just the past few years, researchers have identified the root cause of nearly 2/3 of the 7,000 diseases known to affect humans—and NIH funding must keep pace with innovation. Dehoney stressed that to assure FDA is not slowed down by new responsibilities, expected to be outlined in the Senate's Innovation bill, the agency should also be given resources to accomplish them.

The briefing was co-hosted by Research!America, and Research!America members: EveryLife Foundation for Rare Diseases, National Organization for Rare Disorders (NORD), Shire, Novartis, Parent Project Muscular Distrophy, and other organizations.

For more details on the briefing, visit

This November, Put Good Food and Good Health on the Table

The American Diabetes Association (ADA), a Research!America member, leads the conversation that helps people living with diabetes and those looking to live a healthier lifestyle achieve health and wellness every single day. To raise awareness for American Diabetes Month, ADA will share a timeless message—that eating well is one of life’s greatest pleasures, and enjoying delicious, healthy food helps with diabetes management. Throughout November, the Eat Well, America! campaign will showcase nutritious recipes selected by noted chefs and cookbook authors for every meal of the day, including snacks and celebrations. Additionally, the Association will encourage everyone to “lunch right with every bite” for its very first National Healthy Lunch Day on Nov. 17. The goal is to promote the importance of good nutrition as part of a healthy lifestyle, and help people make better food choices to counter rising rates of type 2 diabetes and obesity-related illnesses.

For more information about American Diabetes Month, visit And to get your company involved in National Healthy Lunch Day, visit

In the News

Media Matters


Vice President Joe Biden’s comments regarding a “moonshot to cure cancer” were highlighted in a Boston Globe article. Research!America President and CEO Mary Woolley applauded Biden’s “passion for putting research to work to end cancer.”



Inside Health Policy quoted Research!America’s statement that “the two-year budget deal is a significant step towards restoring necessary funds for medical research and other discretionary programs that have borne the brunt of sequestration and flat budgets over the last decade.” 

In another article, Politico Pro asked Research!America Vice President of Policy and Advocacy Ellie Dehoney about the prospect of increased funding for the NIH with the budget deal. “The proposal gives lawmakers flexibility to raise NIH's funding without causing political fights by harming other health programs.”


Research!America collaborated with on a joint national poll on Americans’ views on science and the 2016 election. TIME, Scientific American, U.S. News & World Report, Yahoo! Health and other media outlets featured the polling data.


Research!America’s joint statement with United for Medical Research and the defense industry urging Congress to lift discretionary spending caps was quoted in Politico eHealth and Politico Pro. “We urge you to move forward with responsible funding of our national security and medical research priorities.”


In a letter to the editor in USA Today penned by Mary Woolley, she discusses the need to dramatically improve diagnosis, treatment and prevention of mental illness and addiction. “There is so much we don’t know about mental illness, and it is past time to put science to work on it.”

The Hill published an article on mental health research funding and a shrinking federal budget written by Herbert Pardes, M.D., “We need facilities and practitioners who can help people with mental illness and support research that will lead to faster diagnosis and more effective treatments.”



In a Modern Healthcare interview, board member Georges Benjamin, M.D., discusses social determinants of health, reducing gun violence and climate change. “If you live in a community where, tragically, there are no healthcare providers, and the transportation systems aren't well-developed… you're much more likely not to do well because of the distance you have to commute” to get treatment.


Board member Hortensia Amaro, Ph.D., was quoted in USC News about a new book by scholars from the University of Southern California School of Social Work that details how social workers can improve their practice in increasingly complex and global environments. “Social workers continue to face challenges in terms of dealing with more diverse populations and trying to keep up with evidence-based approaches,” said Dr. Amaro.

Media Contacts

Suzanne Ffolkes
VP Communications

Anna Briseño
Communications Manager

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