E TO HOM H CLOSER RESEARC BRINgINg THE 8 H gUST 201 SEARC JULY/AU REATE ADVOC

Now Take Action Nominations Open for Herbert Pardes Family Urge your Award for National Leadership in Advocacy ives representat to be a for Research r champion fo Research!America has announced the Herbert Pardes Family Award for NIH! National Leadership in Advocacy for Research , which recognizes individuals who, throughout their careers have – like Research!America board member Dr. Herbert Pardes – demonstrated Learn more distinguished leadership and sustained commitment to public 8. engagement and advocacy for research. Individuals selected for this on page honor will be those who are highly regarded for their ability to communicate the value of research and innovation to a broad array of audiences, and who, by dint of their example and active encouragement, have inspired others to do so. Nominations for the award are due by Friday, August 3 and should be submitted at www.researchamerica.org/PardesAward . The award will be presented at Research!America’s Advocacy Awards Dinner on March 13, 2019 in Washington, D.C. Honorees for the Pardes award Dr. Herbert Pardes and other advocacy awards will be announced in the fall. Dr. Pardes, executive vice chairman of the Board of Trustees, NewYork-Presbyterian Hospital , is nationally recognized for his broad expertise in education, research, clinical care and health policy. He is an ardent advocate of academic medical centers, humanistic care and the power of technology and innovation to transform 21st-century medicine. Under his leadership, NewYork- C TION Presbyterian became one of the most highly regarded and comprehensive health care institutions A in the world. The hospital is top-ranked in the New York metropolitan area and is consistently ALERT ranked among the best academic medical institutions in the nation, according to U.S. News & World Report . continued on page 3 Strong Majority say it’s Important for U.S. to be Global Leader in Research Straight Talk: Assessing Progress How important do you think it is that the U.S. is a global leader in research to improve health? 1% 2% in Cutting-Edge Research and Public Health 3% Not at all Don’t know Not too important Leaders in government, industry, patient important advocacy and academia will be among the panelists for Research!America’s 2018 National Health Research Forum on Thursday, 26% September 6 at the Newseum in Washington, Somewhat 67% important Very D.C. important The Forum brings together experts from across the research ecosystem for frank discussions on topics that bear importantly on the pace of medical and public health progress. This year’s

forum will touch on such timely issues as how SOURCE: A RESEARCH!AMERICA SURVEY OF U.S. ADULTS CONDUCTED IN PARTNERSHIP WITH ZOGBY ANALYTICS IN MAY 2018. DUE TO ROUNDING, THE TOTAL to maximize the return in every health care MAY NOT ADD TO 100%. dollar, accelerate efforts to address unmet medical and public health needs, and gauge advances in brain science. VISIT US ON THE WEB www.researchamerica.org Confirmed speakers include: Dr. Francis Collins , director, National Institutes of Health; Dr. Robert Redfield , director, Centers for Disease Control and Prevention; Dr. Celia Witten, twitter.com/researchamerica deputy director of the Center for Biologics Evaluation and Research, Food and Drug facebook.com/ResearchAmerica.org Administration; Dr. Joe Selby, executive director, Patient-Centered Outcomes Research Institute ; Dr. Mark McClellan , director, Duke-Robert J. Margolis, MD, Center for Health youtube.com/researchamerica Policy, Duke University; Dr. Susan Fitzpatrick , president, James S. McDonnell Foundation; researchamerica.org/blog continued on page 3 ETTER CHAIR’S L

Mid-summer offers no let-up in the pace of policymaker action on key legislation impacting medical and health research, and we are fully engaged. The good news is that Congress is favorably disposed to supporting research and innovation in both public and private sectors; the bad news is that there are other things on congressional plates as well, which, combined with pressures of election season, could push our interests down in terms of priorities. Our community’s recent success in standing down the rescissions package is the most recent evidence that advocacy works – and it will work again if we all rally to press Congress to act now to support research. Advocacy works because individuals stand up to be heard. A longtime national leader in health, Mary Woolley research for health and advocacy, Dr. Herbert Pardes, has been recognized by Research!America in the President and CEO creation of a new advocacy award that we have just announced. If you know of someone who rises to Dr. Pardes’ level of impact as an advocate, please be sure to nominate that individual to receive recognition next March. See elsewhere in this issue for details.

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

2018 Advocacy Awards Program Support Program Support (continued) Takeda American Society for Microbiology Kempe Foundation Vertex Institute of Translational Medicine at Society for Neuroscience 2018 National Health Research Forum the University of Chicago PCORI

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

Special Thanks to Renewing Research!America Alliance Members

Renewing Members MedStar Health Research Institute Alzheimer’s Drug Discovery Medical University of South Carolina South, Foundation Morgridge Institute for Research th Street 241 18 American College of Nebraska Coalition for Lifesaving 501 Suite 02 Neuropsychopharmacology Cures n, VA 222 Arlingto a.org American College of Surgeons Oregon Health & Science University archameric www.rese American Geriatrics Society Shire 7 Americans for Medical Progress Society for Biomaterials 703-739-257 erica.org Association of Medical School South Alabama Medical Science researcham editor@ Microbiology and Immunology Foundation ca Stanford University School of arch!Ameri Chairs ut Rese Medicine Abo rgest Astellas the nation’s la ch!America is y Beyond Celiac SUNY Downstate Resear n and advocac ublic educatio e University of Kansas Medical Center 501(c)(3) p arch to improv Case Western Reserve University g to make rese liance workin unded in Celgene School of Nursing al nal priority. Fo a higher natio University of Tennessee Health health supported by EB Research Partnership rch!America is t 1989, Resea ether represen Elsevier Science Center tions that tog ber organiza mericans. Virginia Tech mem 125 million A Friedreich’s Ataxia Research Alliance of more than s the voices cacy program Friends of Cancer Research on polls, advo r public opini nd decision Ou h the public a GlaxoSmithKline blications reac and and pu dical, health H. Lee Moffitt Cancer Center & p advance me makers to hel arch. Research Institute scientific rese As of July 11, 2018 Not yet a member? Join Research!America today at www.researchamerica.org/membership .

2 RESEARCH!AMERICA TORS OF DIREC Herbert Pardes Family Award continued from page 1 BOARD An outspoken proponent for academic medicine, children’s health education, mental OFFICERS health issues, access to care and information technology in medicine, Dr. Pardes is a The Honorable Michael N. Castle, chair regular guest on national television news programs and contributes opinion pieces The Honorable John Edward Porter, chair appearing in the Wall Street Journal and other newspapers. He is active at the state and emeritus The Honorable Kweisi Mfume, vice chair federal level, supporting legislation to help hospitals provide quality health care while Mary Woolley, president and CEO balancing today’s economic realities with making the best possible medical care available E. Albert Reece, MD, PhD, MBA , secretary to all who need it. Sudip S. Parikh, PhD, treasurer BOARD MEMBERS Tenley E. Albright, MD National Health Research Forum continued from page 1 georges C. Benjamin, MD Nancy Brown Susan Dentzer Dr. Guillermo Prado , dean, graduate School, Leonard M. Miller professor of public health Victor J. Dzau, MD sciences, director, Division of Prevention Science and Community Health, Miller School of Susan Fitzpatrick, PhD Medicine, University of Miami ; Dr. Ivor Benjamin , president, American Heart Jay A. gershen, DDS, PhD The Honorable Bart gordon Association and director of the Cardiovascular Center at The Medical College of William N. Hait, MD, PhD Wisconsin ; Dr. Gary Cohen , executive vice president of global health, BD ; and Dr. Alfiee Larry Hausner, MBA Breland-Noble , associate professor, Department of Psychiatry, Georgetown University Mary J.C. Hendrix, PhD Martha N. Hill, PhD, RN Medical Center . Rush D. Holt, PhD Elizabeth Baker Keffer Panel sponsors include AdvaMed, Amgen, BD, Pfizer Inc and PCORI . For more Debra R. Lappin, JD information and to reserve your space at the Forum, visit Alan I. Leshner, PhD James L. Madara, MD www.researchamerica.org/forum . Lucinda Maine, PhD, RPh Mark McClellan, MD, PhD Herbert Pardes, MD Harold L. Paz, MD, MS guillermo Prado, Ph.D. Federal Policy Update Derek Rapp gary M. Reedy The appropriations committees in the House and Senate have finished “marking up” Amy Comstock Rick, JD their fiscal year 2019 (FY19) spending bills and, when it comes to our nation’s health Laing Rogers and science focused agencies, the news has been largely positive. Of particular note, Larry J. Shapiro, MD gregory Sorensen, MD the Senate provided an increase of $2 billion for NIH and, net of transfers and one-time Keith R. Yamamoto, PhD funding, provided a $695 million increase for CDC. The House provided a $296 million Elias A. Zerhouni, MD increase for FDA as well as a $408 million increase for NSF. Both the House and Senate EMERITUS DIRECTORS provided $334 million – the same level as FY18 – to AHRQ, but explicitly rejected calls Hortensia Amaro, PhD to roll the agency into NIH. Dennis A. Ausiello, MD Kenneth I. Berns, MD, PhD William R. Brinkley, PhD While both Houses have made significant progress in their respective appropriations Roger J. Bulger, MD efforts, it remains unlikely that the process will be complete by the September 30 end g. Steven Burrill of FY18. We anticipate at least one and potentially several continuing resolutions flat- gail H. Cassell, PhD Wendy Chaite, Esq. funding the government before final FY19 budget numbers are signed into law. Jordan J. Cohen, MD Sam Donaldson As the bills for FY19 were being drafted and sent for mark up, Congress was Robert Dresing simultaneously working to address the administration’s rescissions package, which Joseph M. Feczko, MD Myron genel, MD called for impounding and ultimately cutting $15.4 billion in unused discretionary and Irma E. goertzen mandatory spending authority. Two areas of particular concern in the package were M.R.C. greenwood, PhD cuts of $400 million in USAID Ebola funding and $800 million in Center for Medicare Elmer E. Huerta, MD, MPH Robert A. Ingram and Medicaid Innovation (CMMI) funding. Although the administration cancelled the Jackie Lovelace Johnson proposed Ebola funding rescission, the House passed legislation to implement the Evan Jones other proposed cuts. The Senate, however, voted not to discharge the bill by the June The Honorable Patrick J. Kennedy Caroline A. Kovac, PhD 22 deadline, so no rescissions took place. Philip R. Lee, MD Ellen Levine The House passed bipartisan legislation giving shape to more than 50 discrete John P. Margaritis proposals aimed at addressing the opioid crisis, including language intended to amplify Jewell Jackson McCabe Harry Johns efforts to research and develop non-addictive pain treatments. Catherine E. McDermott Donnica L. Moore, MD Another bipartisan bill pending in the House would repeal the medical device excise James E. Mulvihill, DMD tax, which has twice been suspended, the second suspension expiring in 2020. While Elizabeth g. Nabel, MD these serial, two-year suspensions are a welcome reprieve from the unintended William D. Novelli William A. Peck, MD consequences of this tax on medical technology innovation, a permanent repeal is the Edward E. Penhoet, PhD only way to alleviate investment uncertainty and fully restore the pace of medical William L. Roper, MD, MPH Leon E. Rosenberg, MD device progress. The most likely path to passage for this legislation is tax extenders or Charles A. Sanders, MD omnibus legislation. Mitchel Sayare, PhD Carol R. Scheman On July 12, Agency for Healthcare Research and Quality (AHRQ) Director Gopal Khanna M. Roy Schwarz, MD met with Research!America and Health IT Coalition member organizations to discuss his Susan C. Scrimshaw, PhD John R. Seffrin, PhD goals for the agency and vision for a health care system that leverages advances in IT to Randolph Siegel maximize the societal return on every health care dollar. Mr. Khanna said that to Samuel C. Silverstein, MD maximize its own return, AHRQ must not only fulfill the continuing demand for health Hon. Louis W. Sullivan, MD Hon. Billy Tauzin services research, but work closely with other health care stakeholders to anticipate Reed V. Tuckson, MD and meet the research needs of a rapidly evolving health care system. Christopher A. Viehbacher M. Cass Wheeler John Whitehead Ruth Wooden Judy Woodruff James B. Wyngaarden, MD

THE RESEARCH ADVOCATE 3 New Foundation Focuses on Public Health Impact of Child Migraine Webinar Abuse and Neglect gives Insight on The National Foundation to End Child Abuse and Neglect (EndCAN) aims to change the Research Advances national conversation on the topic to emphasize the health impact of abuse and neglect. Collecting different types of Research!America’s Vice President of Communications Suzanne Ffolkes joined the data and expanding the pool of foundation’s co-founders Dr. Richard Krugman and Lori Poland and Colorado Governor participants should be priorities John Hickenlooper at the State Capitol on June 18 to launch the foundation and release a for migraine clinical trials, national public opinion survey. according to speakers for the Across populations, a strong majority of respondents view child abuse and neglect as a webinar, “The Value of Evidence- public health problem in the U.S. with 81% of Hispanics, 76% of non-Hispanic whites, 74% Based Treatments for Migraine of African-Americans and 67% of Asians in agreement. Respondents also say child abuse Sufferers” hosted by and neglect is a problem in their local communities and state and federal governments Research!America on June 12. should fund research to better understand, prevent and intervene in child abuse and The webinar explored advances neglect. in migraine research to address gaps in prevention and Identifying causes of abusive behavior and treatment to stop it, and best treatments for treatment, development of new victims of abuse and neglect should be research priorities, according to survey therapies, and methods for respondents. “It is not just a social and legal issue, but a major health, mental health and improving access to care. public health problem,” said governor Hickenlooper. “The approach that EndCAN will bring to this issue is sure to make a difference.” One long-neglected area of research has been pediatric For more information on the survey, visit http://bit.ly/2L9ydJH . migraine. “Ten percent of all kids get migraines,” said Dr. Peter McAllister, medical director, New England Institute for Panelists Call for Patient-Centered Neurology and Headache, chief medical officer, New England Mental Health Research Institute for Clinical Research Patient voices are crucial to removing the stigma and Ki Clinical Research. “Up surrounding mental illness and, when included in mental until recently we conducted health research, can dramatically improve health studies on adults and figured outcomes particularly for underserved populations. they may work in kids. But that’s Health experts discussed opportunities to increase changed, fortunately. We have patient involvement in research and barriers to care for several migraine studies now mental health patients at a Capitol Hill briefing hosted by involving children 6 to 11-years- Research!America and the Patient-Centered Outcomes Research Institute (PCORI) on old.” Wednesday, June 13. Andrew Sperling, director, legislative and policy advocacy, National In addition, most clinical trials Alliance on Mental Illness, moderated the panel. exclude women and men with “Money is an issue, but so is lack of awareness and stigma around mental health,” said Dr. comorbid conditions, such as Alfiee Breland-Noble, associate professor, Department of Psychiatry, Georgetown migraine sufferers with University Medical Center. “People who tell their stories [about mental illness] are key to fibromyalgia or painful overcoming stigma,” she added. disorders, said Dr. Jan Lewis Brandes, founder, Nashville Marilyn Perez-Aviles, research assistant, Illinois Institute of Technology (IIT), spoke about Neuroscience group and her experience as a patient navigator in a program run by the Chicago Health Disparities assistant clinical professor, Center and funded by PCORI that pairs mental health patients with those who understand Department of Neurology, their experiences. The program “really engages the community and helps build trust,” she Vanderbilt University School said. Dr. Patrick Corrigan, distinguished professor of psychology, IIT called for more of Medicine. “We need to see collaboration with patients in research. how patients with more than Researchers and health care providers must improve their communication with mental one disorder really respond to health patients, noted Sonya Ballentine. Dr. Elena Rios, president and CEO, National the medication.” Hispanic Medical Association, encouraged researchers to develop materials that are more Researchers should seek accessible to the public. information from migraine patients regarding day-to-day Federal Research Budget tasks, said Dr. Lisa DeLeonardo, PResident’s Fy19 ReseARch!AmeRicA’s % chAnge licensed psychologist and Agency migraine patient. “I hope there’s Fy17 Fy18 Request** Fy19 Asks Fy18 R!A Ask a better way to capture more nih* $34.08 billion $37.08 billion $33.89 billion $39.30 billion 6.0% nuanced quality of life data because it’s much more cdc* $7.26 billion $8.30 billion $6.08 billion $8.45 billion 2% meaningful to patients and to their treating physicians.” FdA** $2.77 billion $2.81 billion $3.26 billion $3.30 billion 17% View a recording of the webinar nsF* $7.47 billion $7.77 billion $7.47 billion $8.45 billion 9% at https://bit.ly/2JJjRPO. AhRq** $0.32 billion $0.33 billion $0 billion $0.45 billion 36% * indicates that program level is reported in this chart ** indicates that budget authority is reported in this chart

4 RESEARCH!AMERICA ATTERS MEDIA M

Vaccines Public Health The American Society for Microbiology and Research!America, in collaboration with the American In an NBC News article about a World Society for Virology, held a panel discussion at the Health Assembly resolution promoting Newseum in Washington, D.C. about infectious disease breastfeeding over formula, research and public health which aired on C-SPAN . A new Research!America board member Georges public opinion survey about Americans' views on the Benjamin, M.D. , executive director of the American Public Health Association , safety and effectiveness of vaccines received extensive Georges Benjamin, M.D. media coverage in outlets such as NBC News, U.S. News commented that the scientific evidence & World Report , and The Hill . overwhelmingly supports breastfeeding and its health benefits for the mother and child. Research!America president and CEO Mary Woolley penned an op-ed published in the Higher Education Morning Consult urging public health stakeholders to initiate more substantive Research!America board member Jay A. conversations about the health benefits of Gershen, DDS, Ph.D ., president, Northeast vaccines. The Washington Post published Ohio Medical University (NEOMED) , and Bruce Johnson , president of the a letter-to-the-editor authored by Woolley Mary Woolley about public awareness regarding the Inter-University Council of Ohio, President and CEO co-authored an op-ed published in The safety and efficacy of vaccines. Jay A. Gershen, DDS, Cleveland Plain Dealer about the Ph.D. The St. Louis Post-Dispatch published a importance of maintaining a high-quality letter-to-the-editor penned by Research!America Vice public higher education system to address workforce President of Communications Suzanne Ffolkes about challenges and spur economic growth in the state. the need for scientists and health professionals to inform the public about vaccines. Children’s Health Research!America board member James Science and the Elections Madara, M.D. , EVP and CEO, American Medical Association , sent a letter to the In a Chemical and Engineering News Trump Administration about the health article, Research!America board member impact of children separated from their Rush D. Holt, Ph.D ., CEO, American parents at the U.S.-Mexico border which was James Madara, M.D. Association for the Advancement of featured in a CNN article. Science, was quoted about increased interest among scientists to run for office Rush D. Holt, Ph.D. during this election season. Pharmacists as Patient Partners Scientific American published an op-ed by The National In a Hill op-ed, Research!America board Science Policy Network about the need for increased civic member, Lucinda Maine, Ph.D., R.Ph., engagement among scientists and Research!America’s executive vice president and CEO, American bipartisan candidate engagement initiative. A separate Association of Colleges of Pharmacy article highlighted the alliance’s request for proposals for (AACP) , wrote that pharmacists can help innovative ideas for candidate outreach led by manage drug costs if state and federal laws graduate-and post-doc student groups. would allow. Lucinda Maine, Ph.D., R.Ph.

IN BRIEF • Research!America board • BIO released the “Value of • FasterCures will be hosting • the diabetes emergency members Dr. James Bioscience innovation in a webinar “the game- Relief coalition, led by the Madara and Dr. Harold growing Jobs and improving changing impact of American Diabetes Paz were named in Modern quality of Life 2018” report empowering Patients with Association, received the Healthcare’s “50 most with teconomy Partners. health data” on July 19. American society of influential Physician Association executives executives and Leaders http://bit.ly/2unL6ZD http://bit.ly/2ulMUlX (AsAe) 2018 summit Power 2018.” of A Award. http://bit.ly/2JiAm46 http://bit.ly/2L9c52g

THE RESEARCH ADVOCATE 5 Communication Key to Tackling Disease Outbreaks Measuring Advocacy Vaccines and stronger public health infrastructures are critical to tackle global health threats, said experts at a briefing Outcomes hosted by Research!America and the American Society for Demonstrating how research Microbiology (ASM) at the Newseum in Washington, D.C. on directly impacts an elected May 21. official’s district should be a The program coincided with the opening of the priority for advocates, according Smithsonian’s “Outbreak” exhibit and the release of a public to speakers who shared their opinion survey that found 95% of Americans think insights on measuring advocacy infectious and emerging diseases facing other countries outcomes during a June 1 will pose a ‘major’ or ‘minor’ threat to the U.S. in the next few years. “It’s webinar hosted by the Society not a question of if there will be another outbreak but when,” said Dr. Stacey Schultz- for Neuroscience and Cherry , president, American Society for Virology. Research!America. The webinar was the fourth in a series aimed “It’s important for those who work with, and who oversee the government, to educate, surveil, at strengthening advocates’ and detect infectious diseases and communicate with the public what they need to know,” said understanding of science Mary Woolley, president and CEO, Research!America. communication, policy and public opinion research. Dr. Anthony Fauci, director, National Institute of Allergy and Infectious Diseases said a universal flu vaccine would safeguard against many strains of flu, including those that cause Research!America board pandemics. Dr. Nancy Messonnier , director, National Center for Immunization and Respiratory member The Hon. Bart Diseases, Centers for Disease Control and Prevention, called immunization a public health Gordon, partner, K&L gates, success story. “Even for diseases for which we have less than perfect control, like pertussis, said advocates should identify mumps and measles, we’re still preventing 90% of the cases that occurred a century ago,” she how their requests to added. Watch a recording of the event at https://cs.pn/2rZxVwR . policymakers benefit their districts and constituents before contacting them. Using Innovation and Patient Access to Treatments Alzheimer’s research as an Research!America president and CEO Mary Woolley moderated a panel discussion on a example, he urged advocates to timely and challenging topic, “Breakthrough Medicine: How Can Patients Afford it?” at the “talk about how many Aspen Spotlight Health Conference on June 22 in Aspen, Colorado. She opened the session individuals in their district or by citing public opinion survey data showing deep public unhappiness about high costs and state have Alzheimer’s, how lack of access, as well as declining trust. many families will be impacted, and the cost it will have on Gary Reedy , CEO, American Cancer Society , emphasized that all stakeholders—very much those families.” including patients - must be involved in discussions of affordability and innovation. Referencing the importance of access he said, “Where you live should not determine if you Monitoring the impact of live.” Andy Slavitt , founder and chairman, United States of Care, observed that it is a ‘false advocacy efforts can be as choice’ to not have both innovation and affordability. It’s all about constant drive for value. simple as tracking media coverage, policymaker Woolley challenged the panelists to go beyond oft-cited calls for ‘systemic change’ to be engagement, or legislation in an specific about how to increase value. Panelist Jeff Marrazzo , CEO of Spark Therapeutics, Excel spreadsheet, said Annette which has made news recently with a one-time intervention to reverse blindness, said his L. Gardner, Ph.D., MPH, company has launched patient-friendly initiatives such as alternative payment models and assistant professor, Philip R. Lee outcome-based rebates. Other potential solutions include negotiated discounts at the Institute for Health Policy pharmacy, improving options for seniors in Medicare Part D, and re-evaluating the Studies at the University of reimbursement system, suggested Steve Ubl, president and CEO of PhRMA . California, San Francisco. “This is the type of data you can Building Public Trust in Science and Scientists collect readily to see if what you’re doing is making a Trust and collaboration between the general public and the scientific community is vital to difference.” maintaining our nation’s global leadership in science and technology. Yet, there is a disconnect between the public and scientists in terms of understanding the societal impact of science, Organizations should also according to a panel of experts at the BIO International Convention in Boston, Massachusetts pinpoint areas where their held on June 6. Seema Kumar , vice president of innovation, global health and policy capabilities fall short, said communication, Johnson & Johnson , moderated the panel. Carlisle Levine, Ph.D., president and CEO of BLE Our nation’s “science enterprise is at risk if the science community remains essentially invisible Solutions, so they can “identify to the general public,” said Research!America president and CEO Mary Woolley . “To reinforce allies who can help fill those trust, and build relationships, communication between the science community and the public gaps.” must improve,” she added. “It’s up to scientists to be more accountable, to reach out to say, “I work for you” to the public that is paying the bills via their tax, consumer and philanthropic To watch a recording of the dollars.” The connection between good health and scientific research must also be made clear webinar, visit to the public, said Dr. Bill Hait , global head, Johnson & Johnson External Innovation. https://bit.ly/2tjabW4. Dr. James Allison , chair of the Department of Immunology at the University of Texas MD Anderson Cancer Center and recipient of the Dr. Paul Janssen Award, said awards help to increase public awareness of the achievements of scientists and scientific progress. Lucia Brown , the 2018 BiogENEius Hall of Fame Recipient, said a lack of diversity in science could also be a factor in public distrust. “When you have individuals who do not look like you at the head of the table, how can you then trust that the research that is being done is actually for you?” Ashanthi De Silva , a rare disease blogger and patient advocate, said the National Institutes of Health’s All of Us Initiative which is gathering data from individuals across different backgrounds to accelerate research could help address the diversity issue. 6 RESEARCH!AMERICA HT SPOTLIg MEMBER Boston Children’s Boston Children’s Hospital (BCH) invests heavily in research because Hospital science saves lives. They are focused on accelerating new treatments for devastating diseases as our discoveries translate from the laboratory bench • Founded: 1869 to the patient’s bedside, where they have been improving the health of children and adults since 1869. • Location: Boston, MA August Cervini • Mission: Provide the highest The research enterprise at Boston Children’s BCH’s investigators—as well as researcher Hospital (BCH)—comprising more than across the country—are on the precipice of quality health 3,000 researchers and representing annual discovering new therapies for deadly care, be the expenditures of greater than $375 million— diseases and continuous support of medical leading source of is the world’s largest at a pediatric center. research will benefit Americans for Their work is fueled by a deep generations to come. Their national research and understanding of disease coupled with investment in research is also a key discovery, world-class discovery platforms, including economic driver at the local, state, and educate the next genetics and genomics, gene editing, federal level as we closely watch how other bioinformatics, proteomics, bioengineering, nations—especially China—are increasing generation of image analysis, multiple animal models, their commitment to research. leaders in child biobanks and disease-specific stem cell lines. health and The hospital has special expertise in rare “Boston Children’s relationship with disease discovery and see large, highly Research!America is critically important to enhance the diverse patient populations. educating Congress about how essential it is health and well- to invest in the nation’s burgeoning “Members of our research community biomedical science environment,” said Mr. being of the include nine members of the National Acad - Cervini. children and emy of Sciences, 18 members of the National families in our Academy of Medicine, 16 Howard Hughes “Since its founding in the late 80s, Medical Institute Investigators and alumni, Research!America has played an incredible local community. and eight Lasker Award recipients,” said important role in mobilizing and leveraging August Cervini, Vice President, Research the funding, advocacy and input of the Administration at BCH. “In total, our research federal government, academia, industry and community publishes more peer-reviewed philanthropy to meet our national goal of research in top scientific journals than the improving human health,” he added. Boston next 20 children’s hospitals combined — Children’s Hospital is proud to be listed as a more than 3,000 annually.” contributing member of one of our nation’s most effective advocacy One of the most exciting endeavors in sci - organizations. Strong Majority Favor Increased ence at Boston Children’s Hospital is around Federal Spending on Vaccine stem cell research. Stem cell clinical trials un - For more information, visit Research Do you favor or oppose increased federal derway at Boston Children’s include a trial www.childrenshospital.org . spending on research to improve and find new that will be among the first to differentiate vaccines? stem cells into tissues and transplant them 4% Strongly into diseased organs. In another trial, a pa - 6% oppose 6% Somewh tient has already been treated with retinal at Don’t oppose 17% cells for macular degeneration of the eye, Not sukren ow derived from induced pluripotent stem cells. 13% 7419% No StrYoensg ly A separate trial hopes to turn pluripotent favor cells into natural killer cells that could be 36% Somewhat used to fight tumors. “Overall the hope at favor BCH is to have the ability to transfuse stem-cell-derived platelets into patients who cannot receive normal platelet units because SOURCE: A RESEARCH!AMERICA SURVEY OF U.S. ADULTS CONDUCTED IN PARTNERSHIP WITH ZOGBY ANALYTICS IN MAY 2018. DUE TO ROUNDING, THE they develop antibodies against them,” TOTAL MAY NOT ADD TO 100%. explained Mr. Cervini.

THE RESEARCH ADVOCATE 7 THE SEARCH RE TE ADVOCA 1 h, Suite 50 treet Sout 241 18th S VA 22202 Arlington, 577 phone 703-739-2 2 fax 3-739-237 70 ca.org archameri www.rese

UP COMINg ne for und deadli n 018- First ro 's Bipartisa July 13, 2 rch!America • ls for Resea tive from proposa ment Initia licy Cultivate Champions for NIH ate Engage science po Candid ost-doc led In order to enhance our understanding of disease and uate and p L4jkvL grad ://bit.ly/2 discover life-saving breakthroughs, the National roups, http Fair and Institutes of Health (NIH) relies on the support of g Life Science 8- Celebrate Congress. Encourage your elected officials to take a ly 18, 201 , DC, leadership role in the Senate and House NIH Caucuses. • Ju ashington .org Reception, W ciencesfair lebratelifes The NIH Caucus plays an essential role in ensuring that www.ce merica’s Research!A robustly funding the NIH is assigned a top priority. In r 6, 2018- orum, creating a concrete strategy to increase federal Septembe Research F • onal Health 2Jcy06Y funding for the NIH, the Caucus allows the United 2018 Nati ttp://bit.ly/ gton, DC, h States to remain a world leader in science and health Washin care innovation. Through the life-saving research NIH supports, our nation can defeat illnesses that rob Americans of health, hope, and time. Take action now: http://bit.ly/2ukaSPp .

PHOTO CREDIT: NATIONAL INSTITUTE OF GENERAL MEDICAL SCIENCES