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 editor@researchamerica.org.

In This Issue of The Research Advocate: JANUARY 2020

Research!America-ASHG Survey Finds Americans Strongly Support Human Genetics Research

Science and Engineering Indicators Report

Investment report: Investment in medical and health R&D not keeping up with needs of nation

President's Letter

Federal Policy Update

Membership Update

Microgrant Programs Are Underway

Rock Stars of Women’s Health Research

Upcoming Events

Advocacy Alert: Urge Congress to Keep Up Momentum

Media Matters: January 2020

Welcome New Interns January 2020

From Research!America

As genetics and genomics knowledge expands rapidly throughout research, medicine, and society, Americans are excited and optimistic about this area of research and its emerging health applications, according to a new survey released this week by the American Society of Human Genetics (ASHG) in partnership with Research!America.

The survey finds the large majority of Americans agree genetic knowledge will be important to their own health and their families’ health. Americans also express great curiosity about genetics, as well as interest in what it tells us about human history and our common heritage as a species, even as knowledge gaps persist. Americans agree that more research is needed in human genetics, and that increased federal funding for that research is important. The survey also confirms the importance placed on confidentiality and security of research data, addressing Americans’ views regarding genetic testing coverage, and highlighting opposition to the use of genetics for insurance coverage or rate-setting.

The nationwide survey, conducted by Zogby Analytics in December 2019, consisted of an online survey of 1,100 American adults, plus 775 additional adults for minority population oversampling. The margin of error was +/- 3.1 percent. The margin of error was higher for subgroups.

Additional highlights from the ASHG/Research!America survey include:

Asked to select adjectives expressing their views on genetics research, respondents’ top five selections are “Curious” (59%), “Hopeful” (53%), “Amazed” (42%), and “Optimistic” (42%), followed by “Cautious” (38%).
Americans agree that continued research is important and believe that the U.S. is not making enough progress in genetic research to date. A strong majority of people surveyed agree (84%) that more research is needed in human genetics specifically, and 74% of Americans report that increased federal funding for genetic research is important.
Both of these strong majorities hold across all ancestry subgroups surveyed, though African Americans agree that more research in human genetics is needed than respondents of other backgrounds (76% vs. 84% of Hispanics, 88% of whites, and 89% of Asian respondents).
Survey participants believe genetic research is critical to improving their families’ health with 77% agreeing that it is important.
More than 60% report that assurances of data confidentiality and privacy would be the key decision factor in their participation in research, along with the ability to help a loved one’s health or their own.
A total of 13% report having taken a direct-to-consumer genetic test; 8% had a genetic test through a hospital or research center; 5% had received genetic counseling; and 5% had participated in research requiring a blood or saliva sample.
Thirty percent report having heard of “precision medicine,” a fast-paced area of research that is creating new diagnostic and treatment options based on an individual’s genetic composition.

“Time and again, the public tells us they value medical research,” said Research!America President & CEO Mary Woolley. “Americans believe in the hope research presents to improve the health and well-being of individuals, families, and communities. As a nation, we must step up and invest robustly in research to find the solutions to what ails us.

Congress is beginning its work on legislation to fund the government in Fiscal Year 2021 (FY21). Last year, a record number of advocates used Research!America’s editable email resource to contact their member of Congress and push for greater investment in the National Institutes of Health (NIH) and other science and public health agencies. Advocacy works! NIH received a $2.6 billion increase, and other agencies like the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), and the National Science Foundation (NSF) also received much needed funding increases. Urge Congress to keep up the momentum in FY21!

As we go to press, the coronavirus is pushing forward, relentlessly claiming lives and shaking global confidence. It is all too possible – and terribly short-sighted – that the President’s budget, to be released within days, will once again specify cuts rather than bolstered resources for NIH, CDC, and FDA, agencies whose own resilience is essential to containing the coronavirus – and so much more. For example, the flu has already claimed 8,200 lives this season. All stakeholders in research for health should speak out to the President and Congress about the necessity to combat a frightening health threat to step up budgetary support this year for federal agencies that are entrusted with finding the solutions to what ails us. Elected officials are listening closely to the electorate right now, with the election cycle pressing forward. As in every election year, Research!America is reaching out to candidates for president and Congress; we want to engage you and your networks in this important advocacy. Watch for us on social media and let us know what you are doing to assure that vocal support for research is a mantra every candidate delivers because it is an affirmation of the strongest values we all hold close – better health and quality of life, a driver of prosperity and security.

On December 19, 2019, Congress passed and the president signed legislation funding the federal government for the remainder of FY2020, avoiding a government shutdown. The legislation included increases of $2.6 billion for NIH, $636 million for CDC, $203 million for NSF, and $91 million for FDA. AHRQ received level funding for FY20 (relative to the significant cut included in the Senate bill, this was a favorable outcome). The appropriations legislation also empowered CDC to begin upgrading our nation’s outdated disease surveillance system, permanently repealed the medical device tax, and reauthorized the Patient-Centered Outcomes Institute (PCORI) for 10 years.

With last year’s budget agreement, Congressional leaders and the White House have already locked in overall government spending levels for FY 21 non-defense discretionary (NDD) and defense spending, setting the stage for the 12 appropriations bills that would flow from those topline numbers. Unfortunately, the agreement provides for just a $5 billion increase across all agencies and programs in the non-defense discretionary category.

These circumstances create challenges for Congress, but Research!America and the medical and health research advocacy community plan to continue to make the case for robust funding increases for science and public health agencies, since the dynamics created by the caps deal do not change the reality that medical, public health and scientific progress are not assigned the priority merited by their enduring and compounding national and global impact.

The President’s FY21 budget, which is nonbinding, will be unveiled on February 10. There is a rumored possibility that congressional leaders will attempt to expedite the appropriations process, working to wrap up FY21 funding by early summer. This being an election year further muddies the appropriations process outlook. For that reason, Research!America is launching a social media campaign making the case for an expedited appropriations process that includes the funding needed to secure our nation’s at-risk global R&D leadership.

In December 2019, Research!America released our annual report on U.S. Investments in Medical and Health Research and Development. The report examines sector-by-sector expenditures from 2013-2018 in the field of medical and health research and development (R&D) across industry; federal government; academic and research institutions; foundations, voluntary health associations, and professional societies; and state and local government.

The report shows that total spending on medical and health R&D in the U.S. over the six-year reporting period grew by 36%, outpacing the 27% growth seen in total health spending (which predominantly consists of health care spending). Yet R&D spending is still a small fraction of overall health spending in the U.S.: only five cents of every health dollar in this country is spent on medical and health R&D. In 2018 specifically, only $194 billion was spent on this form of R&D, while total health spending was nearly $3.8 trillion. When examining which sectors invest the most in this research, industry led in 2018 spending 67% ($129 billion) of total U.S. medical and health R&D expenditures. The federal government followed at 22% or $43 billion, academic and research institutions invested 8% or $16 billion, foundations, voluntary health associations, and professional societies invested 2% or $3.8 billion, and finally state and local governments invested 1% or $2 billion. The report also breaks these entities down further and examines annual spending by subsectors and the percent growth of those expenditures over the six-year reporting period.

Despite the wide range of sectors that invest in medical and health R&D in this country, R&D is simply not keeping pace with the burden of disease.The report details that in the U.S. alone, almost 130,000 people die by the age 45 due to health threats that could one day be prevented or treated with the help of research. Furthermore, while the U.S. invested $194 billion dollars in medical and health R&D in 2018, chronic disease costs surpassed $1.1 trillion in the same year. When examining federal government expenditures, the report also shows that federal medical and health R&D spending consisted of only 1% of the federal budget in 2018, while national defense represented about 14%. But while the report makes clear there is room for improvement, it also explains, “It is not a matter of potential – across every sector described in this report, the talent and commitment exists to exponentially increase medical and public health progress. It is a matter of will.”

The Research!America 2019-2020 Microgrant Initiative is in full swing, with many early-career science policy groups currently planning events that bring together scientists, community, and policymakers. With support in part by the Rita Allen Foundation, funding for graduate student groups’ nonpartisan activities focusing on civic engagement, elevating the importance of scientific research, innovation and public health. These programs encourage dialogue between young scientists and local leaders about the roles science and research play in issues important to their communities. A few program highlights:

The University of California at Berkeley Science Policy Group is holding a series of roundtable discussions on topics that engage both STEM and social scientists as part of the Research!America Science Meets Science program. They are covering issues like wildfires, GMOs, and artificial intelligence. For each, they plan to generate a set of short videos about what was learned from these forums and roundtables.

The University of California at San Francisco (UCSF) science policy group recently traveled to Sacramento (see photo) where group members discussed a variety of science topics to policymakers. Among them, treatments for substance use disorders, mental health, and cybersecurity. In addition to meetings with lawmakers, SPG members toured the State Capitol and met with current CCST fellows to learn more about the legislative process!

Mississippi State Valley University is working on an all-day event, hosting a Deliberative Democracy Community Forum. This advocacy project will allow students to explore civic engagement, build relationships within their communities, and promote citizen-centered democracy to address challenges in the Mississippi (MS) Delta community. Two participating graduate students’ abstracts were recently accepted for a poster presentation to the Conference of Minority Public Administrators on student advocacy. Other events currently underway include an adult science fair, poster sessions with policymakers, a policy memo writing competition, a series of scientific briefings to state lawmakers, and a podcast. To see a full list of microgrant recipients, check out our website.

From Washington

On January 15, 2020, The National Science Board (NSB) released their biennial Science and Engineering Indicators report, which details the state of science and engineering in the United States. The NSB also held a briefing on Capitol Hill on January 15 to discuss the report, during which Dr. Julia Phillips, chair of the NSB’s Committee on National Science and Engineering Policy, summarized its main findings.

Among many important findings, the report indicates the relative global position of the U.S. in science and engineering is declining. As has been often remarked, other nations, most notably China, are drawing from the U.S. playbook of the last century to rapidly develop their R&D capacity.

In terms of global statistics, the report reveals that worldwide investment in research and development (R&D) has tripled since 2000. While the U.S. still leads in “fundamental research” (combined basic and applied research) spending, China now invests the most in “experimental development” (producing or improving products and processes). Since 2000, the U.S.’s share of overall global R&D expenditures has decreased, and the U.S.’s share of science and engineering publications per year has stayed roughly flat.

Within the U.S., the report shows that business has been the largest investor in R&D since the 1980s, while the federal government’s percentage has declined since 2000. Dr. Phillips explained that federal R&D funding is a necessary investment, as federal funds are key for such purposes as basic research and long-term projects.

In the science and engineering workforce, positive trends can be seen in the diversity of many fields with increasing numbers of women and underrepresented minorities present. But even so, these groups still hold a small percent of total jobs in these areas. Furthermore, despite the U.S.’s strong investments in science and engineering R&D, American K-12 science and math test scores continue to lag behind those of many other nations.

Dr. Phillips emphasized, “This dynamic, multipolar landscape is characterized by interdependence and competition. For the U.S. to play a leading role, we cannot be complacent in the face of these changes…” She further remarked, “We should react with excitement, not fear, to this new world. We are well positioned to compete, collaborate, and thrive, and if we are successful, not only will American citizens, but citizens of the world, benefit.”

After years of lagging behind, women’s health research is beginning to deliver significant improvements to health outcomes for women and inclusion of women in research. Women’s life expectancy has increased from 71 years in 1950 to 81 years in 2013; breast cancer deaths have declined from 33.3 per 100,000 women in 1990 to 20.8 per 100,000 women in 2013; more than 50% of participants in NIH-funded clinical trials are women. Despite this significant progress, there remain concerns that the historic lack of inclusion of women in clinical research have resulted in decisions to be made about health care for women based solely on findings from studies of men.

At a recent briefing “Rock Stars of Research: Scientists Who Are Shaping the Future of Women’s Health” hosted by the Endocrine Society and Northwestern University in recognition of Women’s Health Research Week, experts discussed the future of women’s health care and the research that so critically supports it. Dr. Janine Clayton, Director of NIH Office of Research on Women’s Health (ORWH), began by sharing the history of women’s health at NIH and touted the progress made through the 21^st Century Cures Act as well as through ORWH signature programs that have pursued the “ultimate goal of advancing rigorous research relevant to women’s health.” One key step for NIH was the implementation of their Sex as a Biological Variable (SABV) policy in 2015 requiring that sex as a biological variable be factored into research designs, analyses, and reporting in studies funded by NIH. Dr. Clayton explained that factoring biological sex into research not only results in a more complete knowledge base, but improves better health for both sexes.

After explaining the current research landscape, Dr. Teresa Wood, founder and director of the Women’s Health Research Institute at Northwestern, and Dr. Hadine Joffe, executive director of the Mary Horrigan Connors Center for Women's Health and Gender Biology at Brigham and Women's Hospital, a Research!America alliance member, spoke about the future of women’s health. Both pointed to personalized medicine (the tailoring of medical treatment to the individual characteristics of each patient) producing better diagnoses, earlier interventions, and more-efficient drug therapies. Improved understanding of differences between sexes will be key to accomplishing this individualized care.

All three panelists emphasized the importance of increased NIH funding for women’s health research as well as continued leadership from NIH and ORWH in fostering inclusion of women and biological sex variance in clinical research to ensure continued progress towards improved health for all.

To learn more about women’s health research visit the NIH ORWH’s page on research. To become an advocate for women’s health research visit Endocrine Society’s news and advocacy center.

Photo: From left to right: Dr. Teresa K. Woodruff, Dr. Janine Austin Clayton, Dr. Hadine Joffe; used with permission from www.endocrine.org.

Regular Features

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Celebrate the 2020 Advocacy Awards

Celebrate the 2020 Advocacy Award nominees by sponsoring a table at the Awards Dinner, March 11, 2020 at the Andrew W. Mellon Auditorium.

The event is an opportunity to celebrate our esteemed awardees, engage with elected and appointed federal officials and top leaders of many of the federal agencies. Sponsorship opportunities start at $10,000+. Individual tickets also available.

Alliance Member Updates

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As a part of your alliance membership, connect with our expert policy and advocacy staff members. Do you have a big project in the works? Looking for partners with similar interests? Let’s talk!

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*New members approved by Board of Directors as of December 2019

Consider a Planned Gift

A planned gift, commonly facilitated through a will or trust, is a contribution arranged in the present and allocated at a future date. To discuss planned giving opportunities with Research!America, please contact Katie Goode, director of alliance membership and development.

Welcome to our newest interns at Research!America! The science policy internship is supported by the Burroughs Wellcome Fund.

Avery League is an undergraduate senior in the School of Foreign Service at Georgetown University. She is majoring in Science and Technology in International Affairs with a Biotechnology and Global Health concentration and minoring in French. Avery is hoping to pursue a career in global infectious disease control and prevention, and she joined Research!America to advocate for innovative health research. In the past, Avery has conducted research on health security initiatives in West Africa and policies that impact maternal mortality rates in Washington, D.C. In her spare time, Avery enjoys rock climbing and acrylic painting.

Jessica Yan is a recent graduate from the University of Michigan where she studied sociology and ecology. While in school, she worked on a variety of research projects. Some of those topics include songbird evolution, caterpillar herbivory, queer women’s experiences with sexual assault, student engagement in “voluntourism” and imperialism, and more. She also worked with a group of engineering students to innovate a bird identification system that records and identifies birds based on their song. After graduation, she volunteered for over three months helping residents of Detroit fight against unfair property tax assessments through the Homeowners Property Tax Assistance Program (HPTAP). Her work involved raising awareness, counseling residents through the tax exemption application, and notarizing the final document. She also briefly worked as a sushi chef and loved it. Jessica is passionate about racial and environmental justice, ecofeminist critique, and birds, and she hopes her experiences to bridge the gaps between science and social inequities.

RESEARCH

Top 10 Advances in Psychiatric Research for 2019 from the Brain & Behavior Research Foundation (Yahoo!Finance)

“Our model encourages the work of leading scientists who are striving to dramatically improve the lives of people with mental illness and brain disorders,” says Herbert Pardes, MD, President of the BBRF Scientific Council and Executive Vice Chair of the Board of Trustees, NewYork-Presbyterian Hospital.

CORONAVIRUS

Coronavirus poses new test for strained public health system (The Hill)

"We have not had a year in our country where we’ve not had a public health emergency to address and we’re continuing to do it on a shoestring budget,” said Dr. Georges Benjamin, executive director of the American Public Health Association (APHA).

HEALTHCARE

Can high-tech capitalism fix the healthcare industry? (Fast Company)

“If the central lesion on our health system is fragmentation, we don’t want to produce a new fragment,” said CEO of the American Medical Association James Madara at a side conference called the Health Innovation Summit. “These things all have to be connected to each other.”

GENETICS

CRISPR-Edited Babies Arrived, and Regulators Are Still Racing to Catch Up (Scientific American)

“The science is not ready; that is not even an issue,” says Victor Dzau, director of the U.S. National Academy of Medicine. Right now, he says, it would be irresponsible to move ahead with clinical germline editing. “The silver lining is that the world was awakened by the conduct of Dr. He, and we are all working very, very hard with all good intentions to make sure that this doesn’t happen again—not in the fashion that He did it. And that someday, if and when the technology is ready—and I think all of us are very bullish about this technology—that it will be helping humankind in the right way, knowing the risks and knowing the benefits.”

VAPING

Trump hasn’t ‘appropriately addressed’ vaping crisis: American Heart Association CEO (Yahoo!Finance)

Nancy Brown, American Heart Association CEO joins Yahoo Finance's Editor-in-Chief Andy Serwer and Alexis Christoforous at the World Economic Forum in Davos, Switzerland. Brown calls the current vaping crisis “a public health emergency” and says technology companies play ‘an important role’ in the situation.

February 3, 2020
Success or Regress? The State of HIV in 2020
CSIS: Center for Strategic and International Studies
10:30 a.m. - 12:15 p.m.
CSIS Headquarters, 2nd Floor

February 5, 2020
Community Reception on Global Sexual and Reproductive Health Rights
2075 Rayburn House Office Building
Washington, D.C.

February 6, 2020
Webinar: Tailoring SciComm Approaches to Goals
2 p.m. - 3 p.m. ET
A key to effectively communicating – whether with students, policy makers, or journalists – is knowing, in advance, what you hope to achieve and tailoring your approach to your goals. This webinar will cover relevant social science research on the science of science communication to address questions like: What goals do scientists tend to aspire to when they communicate outside academia? Are some goals more or less productive than others? And once a goal is articulated, how can communicators select the best channels, activities, and approaches for communicating to achieve their aims? Featuring Kavli Civic Science Fellow Rose Hendricks. Sign up now!

February 20, 2020
Johnson & Johnson Innovation JLABS
Baby Steps: Med Device Innovation for Children
Biotechnology Innovation Organization (BIO)
1201 Maryland Ave., SW, Suite 900
Washington, D.C. 20024
5:30 p.m. – 7:30 p.m.

February 26, 2020
The Alliance for Eye and Vision Research invites you to...
The Impact of Federal Funding on Glaucoma Research and Clinical Practice
12 -1:15 p.m.
2045 Rayburn House Office Building
Lunch will be served
For more information click here. To RSVP email dinabeau@aol.com.

February 26, 2020
Save the Date - Rare Disease Reception
5:30 p.m. - 7:30 p.m.
Details TBD

March 11, 2020
Save the Date: Research!America Annual Meeting of Members
Willard Room, Willard InterContinental Hotel
1401 Pennsylvania Avenue, Washington D.C.
11:30 a.m. –1:30 p.m. ET

March 11, 2020
Research!America Advocacy Awards Dinner
Andrew W. Mellon Auditorium, Washington, D.C.
5:45 p.m.

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In This Issue of The Research Advocate: JANUARY 2020

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