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: October 2018

From Research!America

The Honorable Louis W. Sullivan Among 2019 Research!America Advocacy Award Honorees

The accomplishments of the 2019 Research!America Advocacy Award honorees have led to a greater  understanding of health disparities, breakthroughs as the result of the convergence of engineering and life sciences, advanced treatments based on genomic research, and improved outcomes for patients suffering from cystic fibrosis.  As Research!America celebrates its 30th anniversary, the alliancee will honor these awardees and others to be named in the coming weeks at the Advocacy Awards Dinner on March 13, 2019 in Washington, D.C.  

 

The Honorable Louis W. Sullivan, MD, former Secretary of the U.S. Department of Health and Human Services and president emeritus of the Morehouse School of Medicine, will receive the 2019 John Edward Porter Legacy Award for his strong commitment to advancing research and public health, and his efforts to improve the health behaviors of Americans, as well as his work raising funds for scholarships for black students in the health professions. He also established the Office of Research on Minority Health (now known as the National Institute on Minority Health and Health Disparities) at the National Institutes of Health. Dr. Sullivan is the founding dean and director of the Medical Education Program at Morehouse College.

 

Susan Hockfield, PhD, will receive the Geoffrey Beane Foundation Builders of Science Award for her leadership as president of the Massachusetts Institute of Technology, where she had a substantial impact on scientific breakthroughs while bringing together life, physical, and engineering sciences. As chair of the American Association for the Advancement of Science, she has championed youth involvement in science and supported women and minorities in research. She is now President Emerita of MIT and a member of the Koch Institute for Integrative Cancer Research. 

 

David R. Williams, MPH, PhD, will be the inaugural recipient of the Herbert Pardes Family Award for National Leadership in Advocacy for Research. Dr. Williams, currently the Florence and Laura Norman Professor of Public Health, Harvard T.H. Chan School of Public Health and Professor of African and African American Studies and Sociology, Harvard University, developed the Everyday Discrimination Scale, now one of the most widely used measures of discrimination in health studies. His work on implicit bias and how it detrimentally affects the health of minority populations has greatly enhanced our understanding of social influences on health. 

 

Denny Sanford, health care philanthropist and long-time supporter of Sanford Health and Sanford Research Institute in Sioux Falls, South Dakota, will be presented with the Gordon and Llura Gund Leadership Award in recognition of his philanthropy and advocacy in support of medical research. His dedication to research and children’s health have led to the development of children’s clinics worldwide and genomic research to treat and prevent breast cancer, experimental research on diabetes treatments, adult stem cell therapy development, and much more.

 

The Cystic Fibrosis Foundation (CFF) will be the recipient of the Paul G. Rogers Distinguished Organization Advocacy Award in recognition for its work supporting a wide range of innovative research programs that seek to discover and develop new and effective therapies for cystic fibrosis. CFF’s investment in basic research, drug development, clinical research have resulted in many new treatments for CF, and its efforts in advocating for patients have meant better, highly specialized care for those who suffer from this disease. 

The honorees for the Isadore Rosenfeld Award for Impact on Public Opinion and the Edwin C. Whitehead Award for Medical Research Advocacy will be announced in the coming weeks.

Visit www.researchamerica.org/advocacy_awards for more information. 

 

The Nobel Prize Proves the Return on Investment in Research

By Georges C. Benjamin, MD, executive director, American Public Health Association and Research!America board member

This year’s Nobel Prize winners in medicine and chemistry remind us of the enormous value of our nation’s investment in research. While these honors reflect prestigious peer recognition for the scientists who receive them, they are really much more. The prize represents a celebration of the enormous progress these avenues of research have had to improve the human condition. We are often asked why we use taxpayer dollars to fund research and what the return on this investment is. Well, a look at this year’s winners shows us in stark terms why our federal investment is a best buy for the American taxpayer. 

The work of Drs. James Allison and Tasuku Honjo expands our understanding of our immune systems helping us harness that power in new and interesting ways to both protect normal cells while improving the targeting of cancerous ones. This is the essence of precision medicine at the molecular level that will benefit populations from both over treatment and under treatment. 

Nobel Prize in Chemistry winners Dr. Frances Arnold and Dr. George Smith and Sir Gregory Winter were recognized for their work on antibodies and enzymes that is charting new and interesting pathways to address diseases at the molecular level and in the manufacture of renewable fuels, an essential strategy to reverse the threat of a warming planet.

We celebrate this year’s winners supported by our investment in research for creating new tools for our medical and environmental toolshed.

Federal Policy Update

The Senate voted (93-7) to approve the second “minibus” package for FY19. As noted in the chart on page 4, the Labor-HHS/Defense package (inclusive of NIH, CDC, AHRQ and the Department of Defense CDMRP) provides a $2 billion increase for NIH as well as modest net increases for CDC and AHRQ. With less than one week before the beginning of FY19, the House also voted (361-61) to approve the package, which was signed by the President on September 28.

The minibus also contained a continuing resolution (CR) for a number of agencies, including NSF (under the jurisdiction of CJS), set to run through December 7. The CR was included to allow for more time to negotiate unresolved issues such as border wall funding. It is unclear, with midterm elections approaching, how long it will take for negotiators to reach a consensus on these outstanding issues and how long into FY19 these agencies can expect flat funding. Although it appeared that an agreement was close, lawmakers were unable to finalize details on the “minibus” package for Interior-Environment, Financial Services, Agriculture (inclusive of FDA) and Transportation-HUD prior to the September 30 deadline. This bill will also be subjected to a CR running through December 7. 

Joint House-Senate Opioid legislation has cleared Congress and awaits the President’s signature.  The compromise bill includes an array of initiatives, including strategies for stopping the flow of synthetic opioids into the nation, providing better treatment and prescribing policies, and bolstering research into non-addictive pain treatment and neonatal abstinence syndrome.

Proposed regulations required under the 21st Century Cures Act to prevent “information blocking,” which refers to situations in which an entity impedes the appropriate sharing of health data, have been sent to the Office of Management and Budget (OMB) for review. Clarity on the provision had faced several delays, however, now that it has been sent to OMB, federal law requires the rule to be published within 90 days. 

The White House released a new biodefense strategy calling for the acceleration of basic and applied research as well as the development of new antimicrobials, vaccines, and diagnostics. The plan, which specifically addresses biological threats such as antimicrobial resistance, aims to better coordinate and strengthen biodefense functions across the Executive Branch.

Migraine Briefing Explores Workplace Accommodations

In a panel discussion hosted by Research!America on October 3 on Capitol Hill, speakers called for more research and explored issues related to workplace accommodations for migraine patients. “We want to work,” said Eileen Brewer, a migraine patient who serves on the board of Clusterbusters. Twenty-two percent of migraine patients have lost jobs due to their condition, she noted, adding that employers should provide “compassionate” accommodations for employees who live with the disease. She described various cost-effective measures such as anti-glare screens on computers, quiet rooms and fragrance-free cleaning products.  Migraine patients also have rights under the Americans with Disabilities Act (ADA), according to Stacey Worthy, JD, of the Aimed Alliance. “Migraine is the 6th most prevalent disability according to the WHO (World Health Organization),” she said, adding that the ADA allows individuals with migraine to request accommodations from employers and some may even qualify for disability payments. But, she noted, migraine is not included in the Social Security Listing of Impairments, known as the “blue book,” which would make it easier for patients to qualify. “Science must drive policy because policy drives change,” emphasized Amy Miller, PhD, President and CEO of the Society for Women’s Health Research (SWHR.). Women are three times more likely than men to experience migraine, she said, adding that more research could lead to a greater understanding, for example, of how hormones influence migraine. Kevin Lenaburg, the moderator of the panel and executive director of the Coalition of Headache and Migraine Patients (CHAMP) said funding for migraine research has yet to match the severity and burden of the disease.
 

University of California, Davis Scientists Inspired to Advocate for Research

Early career scientists at the University of California, Davis say they were inspired by Research!America president and CEO Mary Woolley’s presentation on changing hearts and minds for science on September 17. The seminar was “eye-opening, motivating and amazing,” tweeted one of the participants as Woolley described ways scientists can connect with the public and build meaningful relationships with policymakers. “What do elected officials and scientists have in common? Serving the public’s interest,” she told the group. “It was especially rewarding to talk to scientists who are fired with enthusiasm and determination to find the solutions to what ails us, and ready, willing and able to advocate,” said Woolley. She visited both the Davis and Sacramento campuses, which together encompass a medical school, veterinary school including a primate center, school of engineering, law school, nursing school and graduate and undergraduate science programs, “all highly ranked and highly collaborative,” she added. 

Research!America Staff Departure

After seven years as Research!America’s Vice President of Communications, Suzanne Ffolkes is leaving the nonprofit advocacy alliance on October 12 to become Chief Communications Officer at The Optical Society, a scientific society dedicated to advancing the study of light.  During her time at Research!America, Suzanne significantly raised the profile of the alliance across the country through innovative communications initiatives, facilitated science communications workshops with member organizations, managed public opinion surveys on research for health, and led award-winning multi-media campaigns to increase congressional support for public and private-sector research.  “Research!America’s board and staff join me in complimenting Suzanne’s tremendous contributions to our alliance,  strengthening our efforts to boost funding and advance policies in support of medical, health and scientific research,” said Mary Woolley, president and CEO, Research!America. “Suzanne’s commitment to advocacy for research and science communications is exceptional.  We wish her continued career success at The Optical Society.” Among her accomplishments, Suzanne drove the alliance’s successful Raise the Caps campaign which urged Congress to raise budget caps to help increase funding for federal health and science agencies. 

Bipartisan Civic Engagement Update

Research!America’s Bipartisan Civic Engagement initiative is well underway as graduate and post-doc science policy groups host public and candidate engagement events across the nation. 

The Science Policy Group (SPG) at the University of California, San Francisco (UCSF) hosted their first workshop in a three-part series on September 24, 2018 where they taught scientists to write and publicize op-eds that influence science and health policy. Over 100 community members attended. Speakers included Louise Aronsen, MD, MFA, a UCSF professor and New York Times contributor, and introductory remarks from Keith Yamamoto, PhD, Vice Chancellor of Science Policy at UCSF and Research!America board member. Creating this discourse between the scientific community and the public “is…part of our responsibility as scientists to inform the public of what we do, how we do it, and why we do it,” Dr. Yamamoto stated in his opening remarks.

The workshop kicked off SPG’s Op-Ed writing contest where scientists will submit articles to local newspapers to engage their communities and policymakers on societal benefits of research. The Science Policy Group’s next workshop is October 8, where attendees will draft their own op-ed. 

The Washington Science Policy Network is holding a candidate forum on October 20 at Lewis and Clarke High School in Spokane, Washington with community members and local scientists to discuss how to keep Eastern Washington healthy. Cathy McMorris Rodgers (R-WA), Democratic challenger Lisa Brown and state legislative candidates are invited to attend. Topics for discussion include the opioid crisis, rural healthcare needs, and the health impacts of changing climate.

The Missouri Science and Technology Policy Fellows in collaboration with the Associated Students of University of Missouri are planning Candidate Forums and Debate Watch Parties focused on science and technology policy in Boone, St. Louis, Jackson, and Phelps Counties between October 10 and October 24. Events will begin with brief presentations, questions, and discussions from scientists whose research directly impacts the state of Missouri. Candidates will be asked to weigh in on science policy–related questions as generated from constituent contributions at http://mostpolicyfellows.org

For more information about the Bipartisan Civic Engagement initative, visit http://bit.ly/2PIRSST 

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 September Newsletter

CEO Roundtable
Kavli Foundation

 

National Health Research Forum
AdvaMed
BD
UCB, Inc.

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

Special Thanks to Renewing Research!America Alliance Members

Annenberg Center for Health Sciences

Association of Independent Research Institutes

BD

Bonnie J. Addario Lung Cancer Foundation

Clinical Research Pathways

Feinstein Institute for Medical Research

Howard University

National Organization for Rare Disorders

Northeast Ohio Medical University School of Pharmacy

Sarepta Therapeutics

Solve ME/CFS Initiative

The Ohio State University

Tulane University School of Medicine

University of Colorado Anschutz Medical Campus

Yale University School of Medicine

As of October 5, 2018

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

 

 

Regular Features

President's Letter

Awards and prizes are in the news – the Nobel prizes prominently among them, underscoring how investing in science pays off in finding solutions to what ails us.  Every stakeholder in science should be amplifying the stories of the Nobel; and, every stakeholder in science should be thanking congressional leaders for their stalwart support for the science that will make future solutions, and future Nobel prizes, possible.  Both these opportunities are covered in more detail in this newsletter; please take a look and get involved. 

It is at this time of the year that we announce our 2019 awardees (most of them) as well.  Plan now to join us in Washington on March 13, 2019 to celebrate Dr. Louis W. Sullivan, Dr. Susan Hockfield, Dr. David R. Williams, Denny Sanford, the Cystic Fibrosis Foundation, and others who will be named in the coming weeks.   

Five weeks from now we will know the composition of the new Congress, which will be seated in January.  (I’ve included a couple of days for the conduct of recounts in tight races…)  Advocates still have ample time to reach out to candidates to urge them to make research for health a top priority when they take office.  Even bringing up the topic in a public forum like a Town Hall could make a big difference – it is all too rare that members of Congress tell us they hear from their constituents that science matters to them; please get involved to help change that report! 

 

Member Spotlight: National Organization of Research Development Professionals

The aphorism "a rising tide lifts all boats" as applied to the research enterprise could be the working mantra of members of the National Organization of Research Development Professionals. The mission of NORDP is to provide a platform and a catalyst for collaborative services and resources that span disciplines and cross boundaries within organizations and beyond, to foster multi- and inter-disciplinary research excellence. 

NORDP was founded in 2010; it has nearly 900 members at over 300 institutions, from large R1 institutions to small liberal arts PUIs and private research institutes. While its origins are national, we also have international members: research excellence and collaboration is important everywhere.

NORDP is dedicated to the research enterprise broadly. Research development professionals, many of us coming from academic research ourselves, play key roles at universities across the U.S. and beyond in both the sciences and humanities. Our hundreds of members help researchers do everything from writing better proposals to guiding research advancement at the institutional level. Our members have a vast knowledge of how research is funded—both traditionally and through emerging sources—and how that funding is deployed to spur discovery and foster innovation. We help researchers communicate with the public, and we advocate for our researchers across many sectors.

 Key to our functional skillset is that we are highly collaborative—our members are exemplars of mutual best practice and wisdom sharing. We also deploy these collaborative skills to find ways for researchers to collaborate with one another, especially cross-disciplinarily. These strategies include everything from building databases to hosting researcher get-togethers and managing seed funding programs. 

We believe there are two critical challenges facing the national scientific research enterprise. First, we see a growing mistrust of science in general, including medical research. And second, this mistrust is a persistent threat to funding across the entire research spectrum. As we all know, flat funding is really reduced funding. Other nations are not reducing their investment in research—they are increasing it. 

The good news for this year is that the NIH did get an important boost, in part to address the opioid crisis. But every year, funding is under threat. Other agencies did not fare as well, and their research budgets are flat or even cut. We are happy that NIH continues to be well regarded but we also believe that the basic and social science projects funded by NSF, the EPA, and other federal agencies are critical for medical research; multi-disciplinary partnerships are required to solve the wicked complex problems at hand and are often threatened by such funding gaps. 

Research!America’s work is essential to our goals. The data and publications allow us to supply our members with the information they need to help their researchers, their institutions, and their local constituencies to contextualize the research and make the case for supporting research broadly. Research!America also gives NORDP opportunities to share a collective message from our membership to critical national leaders through networking events like the annual National Health Research Forum.

What we do is train the fighters in the trenches to be effective research advocates, and Research!America gives us powerful ammunition for this fight.

From Washington

Raising Awareness of Child Abuse and Neglect as a Public Health Challenge

The National Foundation to End Child Abuse and Neglect (EndCAN) held its Washington, D.C. launch on September 25 to kick off its new campaign, #GiveFive, in order to raise awareness of child abuse and neglect as a major public health problem. Five children die every day as a consequence of child abuse and neglect; reaching out to five people to spread the word about reversing this statistic is a step in the right direction. Speaking at the National Press Club, the foundation’s co-founder Lori Poland, MA, LLC, RRT, emphasized that EndCAN’s goal is to bridge together the many organizations, agencies, and sectors working on the issue and “change the conversation from being seen as a social and legal problem to a mental health and public health problem.” 

Research!America president and CEO Mary Woolley presented findings from a national public opinion survey, demonstrating that 78% of Americans agree that child abuse and neglect is a public health problem. The public also agrees that child abuse and neglect is not just a public health problem nationwide but prevalent in their own community. “It’s one thing to say it’s a problem somewhere, but it’s another thing to own it in your own community,” she emphasized. 

Kicking off a panel discussion, Richard Krugman, MD, Board Chair of EndCAN, said, “we are really interested in the intersection of child welfare, health, mental health, and public health.” Howard Dubrowitz, MD, MS, FAAP, of the University of Maryland School of Medicine stressed that “The tragedy is not what we don’t know. The tragedy is how we ignore what we do know,” calling for new strategies and new interventions to build on new and existing research. Valerie Malholmes, PhD, CAS, of the NIH’s National Institute of Child Health and Human Development echoed the call for new research, emphasizing that we need “a pipeline of researchers; people who understand these issues and more people who are willing to break out of silos; collaboration and coordination – we need integrated lines of inquiry; and we need to ask the big questions.” 

To learn more about EndCAN and its new campaign, #GiveFive, visit www.endcan.org.

In the News

Media Matters

National Health Research Forum 
Research!America’s 2018 National Health Research Forum “Straight Talk: New Thinking on Persistent Challenges” generated media coverage on Bloomberg BNA and Elsevier Connect. National Journal live-streamed the Forum and social media messages about the event generated significant conversations online.

Dr. Husseini Manji, MD, FRCPC, Global Therapeutic Area Head, Neuroscience, Janssen Research & Development, LLC and a panelist at the Forum, was quoted in POLITICO Pro urging researchers to be more proactive in engaging minority populations in research. 

 

Research Funding
Research!America President and CEO Mary Woolley was quoted in MedPage Today and POLITICO Pro articles about the House and Senate passage of the FY19 appropriations bill. "We applaud congressional approval of the FY19 Labor-HHS/Defense spending bill which ensures increased funding for innovative research and public health initiatives to address deadly and disabling diseases.”  

 

Heart Health 
In a Business Journal article, Research!America board member Nancy Brown, CEO of the American Heart Association, praised a new California law which requires milk or water to be the default drink sold with kids’ meals at fast-food and full-service restaurants. “We strongly encourage other states and communities to follow suit, and we call on restaurants nationwide to take immediate action on their own by removing unhealthy drinks from kids’ meals.”  

 

Scientific Evidence
Research!America board member Rush Holt, PhD, CEO of the American Association for the Advancement of Science was quoted in a Science magazine article about the new Center for Scientific Evidence in Public Issues, which provides nonpartisan science-related information for decision-makers. “At a time when decision-makers too often ignore, misunderstand, or misuse relevant evidence, we need new ways to communicate policy-relevant scientific evidence to decision-makers and influencers in all areas of government and society.” 

 

Opioid Crisis
In an Medpage Today article about addressing barriers in expanding access to treatment for opioid use disorders, Research!America board member Mark McClellan, MD, PhD, and director,  Duke-Margolis Center for Health Policy, Duke University, said that only a third of individuals with opioid use disorder received treatment at a specialty facility or private doctor’s office.

 

 

Medical Education Curriculum  
Research!America board member James Madara, MD, EVP and CEO, American Medical Association (AMA), was quoted in a Modern Healthcare article about the Accelerating Change in Medical Education Consortium, an opportunity for medical schools across the country to change their curriculums with support from the AMA. “The AMA is excited to continue to foster this environment where individuals and institutions can learn from each other and innovate.”

Media Contacts

Anna Briseño
Director of Communications 
571-482-2737

If concerted, long-term investments in research are not made, America will lose an entire generation of young scientists.
Brenda Canine, PhD; McLaughlin Research Institute, Montana