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

Sen. Blunt and Rep. Cole to be Honored with the Whitehead Award for Medical Research Advocacy

Senator Roy Blunt (R-MO)Representative Tom Cole (R-OK)Senator Roy Blunt (R-MO) and Representative Tom Cole (R-OK) will be the recipients of the Edwin C. Whitehead Award for Medical Research Advocacy at Research!America’s Advocacy Awards Dinner on Wednesday, March 16 at the Mellon Auditorium in Washington, D.C.  The congressional leaders are being recognized for increasing investments in research and elevating the importance of medical progress among national priorities. Working together, they secured $2 billion for the National Institutes of Health in the fiscal year 2016 omnibus, the largest appropriated increase for the agency in more than a decade.

“It’s an honor to be recognized by Research!America, and humbling to see all of the groundbreaking efforts that are underway to advance progress toward lifesaving cures,” said Blunt, Chairman of the U.S. Senate Appropriations Subcommittee on Labor, Health and Human Services, and Education and Related Agencies. “Continuing our investment in biomedical research will not only give hope to families battling disease, it will also allow our country to remain on the cutting edge of medical innovation, create jobs, and substantially lower health care costs over the long term.”

“As much as I am honored to receive this award, I am even more pleased that the recent investment in research brings us much closer than before to finding cures and slowing down or even preventing diseases,” said Cole, Chairman of the U.S. House Appropriations Subcommittee on Labor, Health and Human Services, and Education and Related Agencies. “I am hopeful we can build on this progress in the fiscal year 2017 appropriations process.”

Research!America’s 2016 Advocacy Awards dinner honors outstanding individuals and organizations in advocacy for medical, health, and scientific research. The Whitehead Award, named in honor of Research!America founder, Edwin C. “Jack” Whitehead, recognizes exemplary leaders, particularly those in public office, who have demonstrated a deep commitment to advancing medical and health research as a national priority and who galvanize others in support of science.

Other 2016 Advocacy Award winners are Harold Varmus, M.D., Lewis Thomas University professor, Weill Cornell Medicine and Nobel Laureate; John Noseworthy, M.D., president and CEO, Mayo Clinic; Trish and George Vradenburg, co-founders, UsAgainstAlzheimer’s (UsA2); Robert Langer, Sc.D., David H. Koch Institute professor, MIT; The ALS Association; and Lisa Paulsen and The Entertainment Industry Foundation (EIF).  For more information, visit www.researchamerica.org/advocacy_awards

Cancer ‘Moonshot’ Taskforce Kicks Off

Vice President Biden’s ‘moonshot’ initiative to defeat cancer has received a thumbs-up from many Americans who say they are willing to pay more in taxes to support cancer research. A new national public opinion survey commissioned by Research!America shows half of Americans favor a tax increase to advance cancer research with significant support among Democrats (67%).  More than a third of Republicans (38%) and Independents (39%) also favor a tax hike. A majority across the political spectrum (60% of Republicans, 58% of Independents and 54% of Democrats) say they are willing to pay up to $50 per year in taxes for such research, and 28% of Americans are willing to pay even more.

President Obama has proposed a $755 million investment in FY17 for the initiative and additional funding for the Department of Defense and Veterans Affairs for cancer projects. The White House also announced that $195 million will support the initiative in FY16. The Moonshot Task Force, led by Vice President Biden and comprised of Cabinet secretaries from several federal agencies, will ‘ensure optimal investment of federal resources’ and focus on data sharing, public and private sector collaborations, patient engagement, and “high-risk, high-reward” research. The task force aims to double the rate of progress and mark achievements within five years compared to a decade or more. A task force report with findings and recommendations will be presented to the President before end of year. Vice President Biden is also committed to meeting with international cancer experts and world leaders, including at the World Economic Forum in Davos, Switzerland, to push for a coordinated, global offensive against cancer.  

For more survey results, click here.

Federal Policy Update

The Obama Administration anticipates releasing the President’s FY17 budget on February 9, 2016. While all the details are not yet known, the FY17 proposal will likely include $755 million for the Cancer Moonshot. We also expect funding for combating public health threats and to support continued research in key areas of focus. Throughout February, Members of Congress will weigh in with the House and Senate Appropriations Committees detailing their requests for FY17 funding levels. Advocates are also able to weigh in to the Committees with testimony. All of these requests help inform the work of the appropriators who determine levels of funding for all federal agencies and programs.

The Senate HELP Committee is advancing individual pieces of legislation as a companion process to the House 21st Century Cures Act (HR 6). Over the next few months, the Senate will consider multiple bills focusing on a variety of topics ranging from health IT to neurodegenerative diseases like multiple sclerosis to disease registries and beyond. While none of the bills currently slated for consideration include mandatory NIH and FDA funding, such funding may be considered later in the Senate process or during bicameral “conference” negotiations before final legislation is sent to the president for signature. Advocates are continuing to urge the inclusion of NIH and FDA resources needed to realize the goals underlying the House and Senate initiatives.

In Remembrance of Constance Lieber

Research!America board member Constance Lieber passed away on January 15. Since 1980, Constance and her husband Stephen have been among the leading public advocates and philanthropic supporters of schizophrenia and depression research in the U.S. and around the globe. For over 25 years, Connie provided exemplary leadership to the Brain and Behavior Research Foundation (formerly NARSAD), the world's largest private funder of mental health research, and served as the foundation’s president from 1989 to 2007. In 2002, Research!America honored Connie with the Exceptional Contributions as a Volunteer Advocate for Medical or Other Health-Related Research Award. She and Stephen have been long-standing supporters of Research!America. Our condolences to her family and countless friends and all those she helped so profoundly.  

In Remembrance of William Anlyan

William G. Anlyan, M.D., who began his 40-year career at Duke as a medical intern and went on to become professor of surgery, dean of the School of Medicine and chancellor for health affairs, died January 17. A founding Research!America board member, and for several years the Chair of the Board and a member of the Executive Committee, Bill was known as an advocate for medical research, and as an innovator in medical education, and was widely recognized for nurturing the careers of colleagues. He was active in the World Health Organization and a founding member of the Institute of Medicine (now the National Academy of Medicine). In 2007, Research!America honored Bill Anlyan with the Lifetime Achievement Award in recognition of his work as an advocate for medical research. He was a staunch supporter of Research!America and remained actively engaged up to the time of his death. We extend our condolences to his family, the Duke family, and all those whose lives he touched so profoundly. 

Action Alert

We must not remain complacent. While increased federal funding for medical research for FY16 is a significant step in the right direction, we know that sequestration and low funding over the past decade has left us with a substantial uphill battle. It is pivotal that advocates urge their representatives early in the FY17 appropriations process to support medical progress and innovation by championing robust funding for the National Institutes of Health (NIH), National Science Foundation (NSF), Centers for Disease Control and Prevention (CDC), Agency for Healthcare Research and Quality (AHRQ), and Food and Drug Administration (FDA). Please take this opportunity to urge Congress to continue last year’s momentum by supporting FY17 appropriations for these agencies, click here

ASBMR Capitol Hill Day

Not even “Snowzilla” could stop leaders from the American Society for Bone and Mineral Research (ASBMR) members from advocating on Capitol Hill for sustained and predictable increases to the National Institutes of Health on Wednesday, January 27.  Research!America CEO Mary Woolley motivated ASBMR members the evening prior to the ASBMR Capitol Hill Day “to stand shoulder to shoulder to turn last year’s ‘moment’ for research into a movement,” which is exactly what they did on Capitol Hill. ASBMR President Douglas P. Kiel, MD, MPH said of the experience, “Today was further evidence that a personal commitment to advocacy is crucial to attach a face to the important, life-saving research we do, so that our policy makers and the general public remember the significance of supporting scientists.”

ASBMR leaders held a total of 25 meetings with elected officials representing nine states and eight congressional districts. ASBMR leaders communicated the need to solve the health problems facing the American public through research and for access to testing that will save the lives of people with osteoporosis, thanks to the training provided by Woolley and Yvette Seger, Science Policy Director at the Federation for the Advancement of Experimental Biology (FASEB).

Their message was clear: Sustainable and predictable increases to NIH funding for FY2017 and beyond are needed to ensure it continues serving as the world's preeminent medical research institution and for it to remain our best hope for finding cures, improving treatments, and gaining a better understanding of the complex causes of diseases that affect millions of Americans.

Rare Disease Day on February 29

Rare Disease Day, February 29, is intended to raise awareness among the public and policymakers of these diseases and their impact on patients’ lives. There are nearly 7,000 rare diseases affecting nearly 30 million Americans-- almost one in ten. The campaign, which involves over 80 countries, is sponsored by the National Organization for Rare Disorders (NORD) and its sister organization, the European Organization for Rare Disorders (EURORDIS). This year’s theme, “Patient Voice,” recognizes the crucial role that patients play in instigating change that improves their lives and the lives of their families and caretakers. Patients can also share their perspective to ensure that medicines are developed more efficiently. Participate on social media using the hashtag #RareDiseaseDay. For more information and statistics about rare diseases, view Research!America’s fact sheet: http://bit.ly/1OSMkjA. To learn more about how to get involved in Rare Disease Day and events near you, visit http://www.rarediseaseday.org/

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

From Washington

Panel Discussion on the Role of Science in Politics

Even policy experts disagree on the role of science in politics and the public discourse. A panel discussion titled “Is Science on Trial? Science, Politics, and the 2016 Election,” at George Washington University (GWU) on January 27 highlighted different perspectives regarding the level of distrust among policymakers and the general public on scientific issues.

Moderator Jeffrey Mervis, Science magazine news correspondent, opened the conversation by citing a recent Pew Research Center poll which revealed that many factors other than political ideology—such as age, gender, religion, and race—also influence people’s beliefs about scientific issues. He asked panelists to discuss why they think people remain skeptical about issues, such as vaccinations and climate change, despite scientific evidence. Former Representative Rush Holt, Ph.D., CEO of the American Association for the Advancement of Science and Research!America board member, attributed some of the blame to the U.S. education system, which he says is designed to prepare future scientists, not to educate the majority of students about science and its impact on society.

Allison Macfarlane, Ph.D., director of GWU’s Center for International Science & Technology Policy and former chair of the U.S. Nuclear Regulatory Commission, noted that most science policy issues cannot be settled by science alone. Other factors such as cultural values, economic interests and safety must be considered. Conversely, Benjamin Zycher, Ph.D., resident scholar at the American Enterprise Institute, argued that in situations where some individuals feel there is competing evidence, the federal government should take a lesser role and allow states to decide which policies to pursue.

Al Teich, Ph.D., professor of science and technology policy at GWU, added there’s room for improvement in communicating risk, which he said would go a long way in improving the public’s trust in science. Other panelists included; Dahlia Sokolov, Ph.D., minority staff director of the House Science Committee’s Research and Technology Subcommittee. 

National Science Board Report Ranks U.S. as Global Leader in Science and Engineering

The United States science and engineering (S&E) enterprise still leads the world, according to data published in the National Science Board's Science and Engineering Indicators 2016 report, released January 19. The U.S. invests the most in research and development (R&D), produces the most advanced degrees in science and engineering and high-impact scientific publications, and remains the largest provider of information, financial and business services, the report notes.

In the meantime, Southeast, South, and East Asia continue to rapidly ascend in many aspects of S&E. The region now accounts for 40 percent of global R&D, with China as the stand-out as it strengthens its global S&E capacity. According to the report, China is now the second-largest performer of R&D, accounting for 20 percent of global R&D as compared to the United States, which accounts for 27 percent.

The report shows that U.S. federal investment in both academic and business sector R&D has declined in recent years. "Our country's commitment to investing in R&D and in our higher education institutions has and continues to fuel our success," said National Science Board chair Dan Arvizu in a press release. "Other countries are emulating our model.” 

February is American Heart Month

The American Heart Association (AHA) and its Go Red for Women movement invite advocates to make America “go red” this February in honor of American Heart Month and to raise awareness about heart disease, a leading killer of women as well as men. Heart disease, stroke and other forms of cardiovascular disease kill 1 in 3 Americans.

Join the National Wear Red Day Twitter Chat Friday, February 5 at 2:00 p.m. ET, in collaboration with Woman’s Day and the National Heart, Lung and Blood Institute. Use the hashtag #HeartChat and get involved in the virtual discussion. Watch AHA’s Go Red For Women Red Dress Collection™ Livestream, a virtual event where top designers and celebrities demonstrate their support for women’s heart health during fashion week on Thursday, February 11, at 8 p.m. ET.

Learn more at an upcoming congressional briefing on Wednesday, February 24 at 1:30 p.m., “Is Medical Research Meeting the Needs of Women? A Discussion of GAO’s Report and Its Policy Implications.” The briefing, which will take place in 188 Russell Senate Building, is sponsored by AHA, the Society for Women’s Health Research, and WomenHeart: The National Coalition for Women with Heart Disease. The GAO report, Better Oversight Needed to Help Ensure Continued Progress Including Women in Health Research,” is available online: http://1.usa.gov/1RYyUX0. For more information about February’s events, visit www.heart.org

Zika: The World’s Fast-Growing Health Threat

The mosquito-transmitted disease that has emerged in Central and South America, is now being declared a global public health emergency by the World Health Organization (WHO), requiring a coordinated response to combat the virus. According to WHO’s website, Zika normally causes symptoms such as fever, joint pain, skin rash and conjunctivitis. In Brazil and French Polynesia, the virus may be linked to a condition called microcephaly in which babies are born with an underdeveloped head and brain. And there are new reports the virus has been sexually transmitted in Texas.

Currently, Zika has no vaccine, but Anthony Fauci, M.D., director of the National Institutes for Allergy and Infectious Diseases (NIAID), says scientists are searching for a solution. “NIAID researchers are working on vaccine candidates to prevent Zika virus infection. It is to our advantage we already have existing vaccine platforms to use as a sort of jumping off point,” he said.

Regular Features

President's Letter

With the President's decision to make cancer research one of his top five priorities, asking an already fired-up-for-medical-research Congress to work with him and Vice President Biden to fuel medical progress this year, 2016 has early hallmarks of good news for patients and researchers alike. Our new survey data shows that the public is paying attention and is supportive, up to and including saying they would pay more in taxes to support the "moonshot." While this isn't on the table, per se, it is a wonderful expression of solidarity around a goal that is and always will be non-partisan.  

But partisan politics are alive and well in this election year!  We have heard from some of the presidential candidates about their commitment to medical research but voters still say they want to hear more. Perhaps the full-throated leadership of members of Congress like the special two we will be honoring at our awards dinner next month, Senator Roy Blunt and Congressman Tom Cole, will influence those further "up ticket" to speak out. And, I hope you will do some of that 'urging' yourself. Call on us for ideas and assistance.  

I close this month's message with a heavy heart, thinking of the death of Research!America's former board chair and long-time leader and supporter, William G. Anlyan, M.D. Bill made an enormous difference in our world, inspiring me and countless others to doing all we can to commit to finding solutions to what ails us. He will be deeply missed.

Member Spotlight: American Psychiatric Association

Founded: 1844

Location: Arlington, VA

Mission: To promote the highest quality care for individuals with mental illness, including substance use disorders, and their families; promote psychiatric education and research; advance and represent the profession of psychiatry; and serve the professional needs of its membership.

The American Psychiatric Association (APA) is the main professional organization of psychiatrists and trainee psychiatrists in the United States, and the largest psychiatric organization in the world. With over 36,000 members involved in psychiatric practice, research, and academia representing the diversity of the patients for whom they care, APA encompasses members practicing in more than 100 countries. The association publishes a number of journals, as well as the Diagnostic and Statistical Manual of Mental Disorders (DSM). The DSM codifies psychiatric conditions and is used worldwide as a guide for diagnosing disorders.

The American Psychiatric Association (APA) adopted a new motto in 2015: “Medical leadership for mind, brain and body.”

“Our goal is to have our members become leaders in medical innovation for the benefit of their patients and the discipline of psychiatry through the 21st century and beyond,” said Saul Levin, M.D., M.P.A, CEO and Medical Director of the APA.

For the APA, medical research is the cornerstone of that effort. The data APA obtains from its research projects informs everything the organization does, from educational programs to the myriad publications, including the DSM-5, it produces for both professional and lay audiences.

One area where medical research is particularly valuable to APA is in advocacy efforts with Congress. Recent factors, such as sequestration, have reduced the amount of funding available for basic medical research for the National Institutes of Health (NIH). Fortunately, the December 2015 passage of the omnibus spending bill was a departure from that trend with a $2 billion increase in NIH funding, as well as more funds for the Substance Abuse and Mental Health Services Administration.

“Because we have had well-researched studies with reproducible results to back up our advocacy efforts, we’ve been able to show a number of lawmakers on Capitol Hill that better health care for people with mental illness does not necessarily mean more expensive care,” said Levin. “The result of our work and the work of our allies is evident. There are now several mental health reform bills in both houses of Congress that have received broad bipartisan support.”

Medical research has also led to significant changes in the way APA members practice medicine. For example, research into brain imaging procedures has been able to predict which treatments a patient suffering from major depressive disorder will respond to, a finding that could have a major impact on patient outcomes in the near future. Similarly, the results from a 17-year study into an integrated treatment program known as Recovery After Initial Schizophrenia Episode (RAISE), for first-episode psychosis, has shown healthier outcomes and reduced cost of care.

The 14 million Americans with a serious mental illness, such as schizophrenia or bipolar disorder, and the more than 40 million Americans with diagnosable mental disorders deserve to experience the 21st century medical breakthroughs that only well-funded medical research can deliver.

“We are committed to the continued support of medical innovation achieved through robust research initiatives, and we’re proud to be a part of Research!America,” said Levin.

 

 

In the News

Media Matters

Federal Budget Priorities

Research!America president and CEO Mary Woolley and Robert Bixby, executive director of the Concord Coalition, co-authored an op-ed in The Philadelphia Inquirer underscoring the need for elected officials to address the basic structural problems in the federal budget to prevent downward pressures on research and other important national priorities.

‘Moonshot’ Initiative 

Following the announcement of Vice President Joe Biden’s “moonshot” initiative during the State of the Union address, Woolley expressed her support for the endeavor in POLITICO Pro, The Washington Examiner, Medpage Today and Modern Healthcare, and other publications.

Research!America’s press release highlighting new national public opinion survey data which showed Americans’ willingness to pay more in taxes to support cancer research was covered in The Morning Consult, Inside Health Policy, Oncology Nurse Advisor and newsfultoncounty.com  

2016 Policy Wish List

Research!America urged Congress to take action on several research and innovation priorities this year in a policy wish list featured in The Cancer Letter and POLITICO Pro.

Future of Research Funding

A profile article of Mary Woolley in The Washington Examiner included her insights on the future of NIH funding, promising areas of research, and congressional champions for research. “For the first time in many years, so many members of Congress are not only talking about their commitment to research, but also delivering on that commitment,” she said.

Senate Innovation Bills

In an article about the Senate’s bills on biomedical innovation, BloombergBNA featured comments from Woolley. “Researchers, advocates and patients alike have been anticipating policies and funding to support the NIH and FDA in ways that will advance medical progress,” she said.

Gun Violence Research

Research!America board member Dr. Georges Benjamin, executive director of the American Public Health Association was quoted in a WebMD article underscoring the need for gun violence research to help evaluate the effectiveness of gun laws and improve gun safety.

 

Partnership to Cure Coronary Heart Disease

Research!America board member Nancy Brown, CEO American Heart Association, was quoted in Fast Company about the search for a research team to lead the ‘One Brave Idea’ initiative supported by the American Heart Association, Verily, and AstraZeneca to cure coronary heart disease.

Digital Health

In a Modern Healthcare interview, Research!America board member Dr. James Madara, EVP and CEO, American Medical Association, discussed the organization’s investment in the new for-profit Health2047, a health technology company that’s focused on helping patients manage chronic conditions like diabetes and heart disease.

Media Contacts

Suzanne Ffolkes
VP Communications
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Anna Briseño
Communications Manager
571-482-2737

Funding research gives all of us a better chance of living a healthier life.
Pam Hirata, heart disease survivor