bRINGING RESEARCH CLOSER TO HOME

SEPTEMbER 2017RESEARCHTHE

ADVOCATE

Take Action Now

urge Congress to

#Raisethe Capsfor FY18.

Learn more onpage 8.

Major health threats ranging from the opioidepidemic to Alzheimer’s disease are impacting thepace of medical progress. How can we overcomethese challenges to achieve a longer, healthierlifespan? Research!America’s National HealthResearch Forum will focus on potential solutions inpanel discussions Thursday, September 7, 11:00a.m. – 3:00 p.m. ET, at the Newseum in Washington,D.C. Experts representing academia, patient groups,government, industry and scientific societies willdiscuss what it will take to make dramatic stridesagainst deadly and debilitating health threats.

Mikael Dolsten, M.D., Ph.D., president of worldwide research & development, Pfizer, willprovide keynote remarks. Scott Gottlieb, M.D., commissioner of the Food and DrugAdministration, will discuss the agency’s current priorities to advance research andinnovation.

The first panel, moderated by Marilyn Serafini, health care policy consultant and formeraward-winning journalist, will explore the role of research in understanding andaddressing the opioid epidemic and other community health threats. Panelists includeGovernor Charlie Baker (R-MA); Seth Ginsberg, co-founder and president, GlobalHealthy Living Foundation; The Hon. Patrick Kennedy, u.S. Representative, 1995-2011;Gopal Khanna, director, Agency for Healthcare Research and Quality; Lucinda Maine,Ph.D., R.Ph., executive vice president and CEO, American Association of Colleges ofPharmacy; and Anne Schuchat, M.D., principal deputy director, Centers for DiseaseControl and Prevention.

twitter.com/researchamerica

facebook.com/ResearchAmerica.org

youtube.com/researchamerica

researchamerica.org/blog

VISIT uS ON THE WEbwww.researchamerica.org

SOURCE: A RESEARCH!AMERICA SURVEY OF U.S. ADULTS CONDUCTED INPARTNERSHIP IN JULY 2017. DUE TO ROUNDING, THE TOTAL MAY NOT ADD TO 100%.

Research Institutions Provide Support inWake of Hurricane Harvey

AC T I O N

A L E R TMajority Agree Discussion of ClinicalTrials Should be Part of Standard CareDo you agree or disagree that health care professionalsshould discuss clinical trials with patients diagnosedwith a disease as part of their standard of care?

Experts and Agency Heads will

For every tragedy, communities come together to aidthose in need. Many research institutions and healthorganizations are in full response mode as they offerresources to those affected by the storm.

The American Diabetes Association, JDRF andInsulin for Life have shipped more than 3,750 poundsof donated diabetes supplies to people with diabetesaffected by the hurricane.

Georges Benjamin, M.D., executive director,American Public Health Association andResearch!America board member has encouragedhealth centers to use the National Academies of Science and Medicine report, Strengthening theDisaster Resilience of the Academic Biomedical Research Community, as a road map for recovery andfuture planning.

Academic institutions, such as Baylor University, the University of Texas Health Science Center,Louisiana State University, and the University of Alabama at Birmingham are reaching out toaffected students and providing links to resources on their websites.

The National Medical Association is coordinating donations, in-kind services, and relocation jobopportunities. Healthcare Ready, a non-profit created by PhRMA to ensure health care accessduring times of disaster has activated RxOpen map, a free interactive map showing open andclosed pharmacies in affected regions.

continued on page 3

39%Somewhat

agree

47%Strongly

agree

5%Somewhatdisagree

Discuss a World Without Disease

9%Not sure

0.4%Stronglydisagree

PRESIDENT’S LETTER

Hurricane Harvey has proven to be a major game changer. First and foremost, for the lives andproperty lost and damaged in Texas and beyond. The outpouring of assistance, from national, stateand local government entities to individual acts of kindness and bravery, is nothing short ofinspirational. As recovery moves into the next stages, health risks will be more and more apparent.CDC and NIH, local institutions and their national and international support networks are at theready; indeed they are already at work. We at Research!America are proud to be advocates for theresearch and researchers who make prevention, early intervention and delivery of treatmentlife-saving and cost-effective.

There is another way that Hurricane Harvey is a game changer, and that’s here in Washington, as itinfluences decision-makers’ agenda this month. bipartisan support for recovery in Houston is agiven; this spirit is likely to extend to challenges that too often have seemed intractable, includingthose that directly impact the conduct of research in both the public and private sector. That’s areason for optimism, but not a reason for complacency. September is crunch time for all the stake-holders in research for health to speak up as part of our campaign to #RaisetheCaps to assure thatbipartisan congressional support for science has every chance to succeed. Read more on this andother topics elsewhere in this newsletter.

2 R E S E A R C H ! A M E R I C A

2017 National Health Research ForumAmerican Association of Colleges of

PharmacyAstellas Pharma US, Inc.Bristol-Myers SquibbJanssen Pharmaceutical Companies

of Johnson & JohnsonUCB, Inc.

Investment Report – 12th EditionDoris Duke Charitable Foundation

Science Policy Internship ProgramBurroughs Wellcome Fund

West Virginia Research ForumBerkeley County Development

AuthorityLowe Real Estate GroupPotomac Wave ConsultingRandox Laboratories-US, Ltd.United BankValley Health

Special Thanks to New and Renewing Research!America Alliance Members

New Members

Morgan State UniversityNational Rural Health AssociationRoivant Sciences, Inc.Society for BiomaterialsUnited Mitochondrial Disease Foundation

Renewing Members

Academy of RadiologyResearch/Coalition for Imaging

and Bioengineering ResearchAmerican Association of

Colleges of PharmacyAmerican College of Medical

Genetics and GenomicsAmerican Foundation for

Suicide PreventionAmerican Heart AssociationAmerican Medical AssociationAmerican Pain SocietyThe American Society of

Human GeneticsAssociation of American Cancer Institutes

Association of American PhysiciansAssociation of American Veterinary

Medical CollegesBaylor College of MedicineBonnie J. Addario Lung Cancer

Foundation

Carnegie Institution for ScienceCleveland Clinic Lerner

Research InstituteDamon Runyon Cancer

Research FoundationDuke University Medical CenterFasterCures, The Center for

Accelerating Medical SolutionsFriends of the National Institute of

Nursing ResearchGeorgetown University

Medical CenterHoward UniversityHoward University College

of DentistryHoward University College

of MedicineHudsonAlpha Institute for

BiotechnologyIndiana University School of NursingInfectious Diseases Society of

AmericaInstitute for Systems BiologyJohns Hopkins MedicineThe Johns Hopkins University

Bloomberg School of Public Health

JDRFKeck School of Medicine of the

University of Southern

CaliforniaLung Cancer AllianceMassachusetts Institute of

TechnologyMedStar Health Research InstituteMultiple Myeloma Research Foundation

National Alliance for Eye and Vision Research

National Alliance on Mental IllnessNational Psoriasis FoundationNew Jersey Association for Biomedical Research

Northeast Ohio Medical University College of Pharmacy

Parent Project Muscular DystrophyRice UniversitySanofiSociety for Immunotherapy of CancerSolve ME/CFS InitativeTufts UniversityUniversity of Nebraska Medical Center

University of South FloridaUniversity of Wisconsin School of Medicine and Public Health

Wake Forest University School of Medicine

Whitehead Institute for Biomedical Research

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

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

241 18th Street South,

Suite 501Arlington, VA 22202

www.researchamerica.org

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editor@researchamerica.org

About Research!America

Research!America is the nation’s largest

501(c)(3) public education and advocacy

alliance working to make research to improve

health a higher national priority. Founded in

1989, Research!America is supported by

member organizations that together represent

the voices of more than 125 million Americans.

Our public opinion polls, advocacy programs

and publications reach the public and decision

makers to help advance medical, health and

scientific research.

Mary WoolleyPresident and CEO

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

bOARD OF DIRECTORS

T H E R E S E A R C H A D V O C AT E 3

O F F I C E R SThe Honorable Michael N. Castle, chairThe Honorable John Edward Porter, chairemeritusThe Honorable Kweisi Mfume, vice chairMary Woolley, president and CEOE. Albert Reece, MD, PhD, MbA, secretaryLucinda Maine, PhD, RPh, treasurer

b O A R D M E M b E R STenley E. Albright, MDHortensia Amaro, PhDGeorges C. benjamin, MDNancy brownSusan DentzerVictor J. Dzau, MDSusan Fitzpatrick, PhD Jay A. Gershen, DDS, PhDThe Honorable bart GordonWilliam N. Hait, MD, PhDLarry Hausner, MbAMary J.C. Hendrix, PhDMartha N. Hill, PhD, RNRush D. Holt, PhDHarry JohnsElizabeth baker KefferDebra R. Lappin, JDAlan I. Leshner, PhDJames L. Madara, MDMark McClellan, MD, PhDHerbert Pardes, MDSudip S. Parikh, PhDHarold L. Paz, MD, MSGary M. ReedyAmy Comstock Rick, JDLarry J. Shapiro, MDLaing Rogers SistoGregory Sorensen, MDKeith R. Yamamoto, PhDElias A. Zerhouni, MD

E M E R I T u S D I R E C T O R SDennis A. Ausiello, MDKenneth I. berns, MD, PhDWilliam R. brinkley, PhDRoger J. bulger, MDG. Steven burrillGail H. Cassell, PhDWendy Chaite, Esq.Jordan J. Cohen, MDSam DonaldsonRobert DresingJoseph M. Feczko, MDMyron Genel, MDIrma E. GoertzenM.R.C. Greenwood, PhDElmer E. Huerta, MD, MPHRobert A. IngramJackie Lovelace JohnsonEvan JonesThe Honorable Patrick J. KennedyCaroline A. Kovac, PhDPhilip R. Lee, MDEllen LevineJohn P. MargaritisJewell Jackson McCabeCatherine E. McDermottDonnica L. Moore, MDJames E. Mulvihill, DMDElizabeth G. Nabel, MDWilliam D. NovelliWilliam A. Peck, MDEdward E. Penhoet, PhDWilliam L. Roper, MD, MPHLeon E. Rosenberg, MDIsadore Rosenfeld, MDCharles A. Sanders, MDMitchel Sayare, PhDCarol R. SchemanM. Roy Schwarz, MDSusan C. Scrimshaw, PhDJohn R. Seffrin, PhDRandolph SiegelSamuel C. Silverstein, MDHon. Louis W. Sullivan, MDHon. billy TauzinReed V. Tuckson, MDChristopher A. ViehbacherM. Cass WheelerJohn WhiteheadRuth WoodenJudy WoodruffJames b. Wyngaarden, MD

Federal Policy updateAs members of Congress return to D.C. this month,they face formidable budget challenges. There areonly 12 days in September when both chambers arein session; yet, by September 30, 2017 they must: 1)pass and secure the president’s signature on anFY18 budget bill; 2) increase the debt limit; and 3)potentially pass supplemental spending to assistTexas in the wake of Hurricane Harvey. Congresswill also be under significant pressure to stabilizethe individual insurance market by shoring up theAffordable Care Act. It is likely that Congress willlimit its consideration of ACA-related matters to thisaspect of reform, and will not address repeal of themedical device tax in September.

One of the first items on the Senate Appropriations agenda is marking up the FY18 LHHSbill. One troubling rumor is that the Senate bill may not only include restrictions on fetaltissue research, similar to the House bill, but that it will also place new restrictions onembryonic stem cell research.

The House plans to unveil a 12-bill omnibus when they return in early September thatincorporates the four-bill, security-focused minibus that passed the House in July, alongwith the other eight appropriations bills that have passed their respective appropriationssubcommittees. However, it is unlikely that the House and Senate will coalesce around afinal FY18 spending package by September 30. The most likely budget scenario is thatCongress will pass a short-term Continuing Resolution temporarily sustaining FY17funding levels.

It remains critically important to make the case for a bipartisan budget deal that raisesFY18 “sequestration” caps on discretionary spending. On August 30, Research!Americahosted an alliance members call to set the stage for a two-day digital #RaiseTheCapsinitiative on September 11 and 12.

Research!America also hosted an in-person alliance members meeting on August 29 withMajority and Minority staff of the Senate HELP Committee. The Committee staffers sharedtheir FDA and NIH priorities for the remainder of 2017 and fielded questions about 21stCentury Cures implementation, indirect costs, a standing fund for public healthemergencies, hearings on the topic of drug pricing, the possibility of a hearing exploringAHRQ’s role in advancing health and health care, and other salient issues.

Byron Pitts, anchor & chief national correspondent, AbC News, will moderate the secondpanel that will focus on regulatory science, patient perspectives in research and barriers toinnovation. Panelists include Joel W. Beetsch, Ph.D., vice president of global patientadvocacy, Celgene Corporation; Nancy Brown, chief executive officer, American HeartAssociation; Victor Dzau, M.D., president, National Academy of Medicine; Mark B.McClellan, M.D., Ph.D., MPA, director, Duke-Robert J. Margolis, MD, Center for HealthPolicy, Duke University; Joe V. Selby, M.D., MPH, director, Patient-Centered OutcomesResearch Institute; and Scott Whitaker, president and CEO, AdvaMed.

The third panel, moderated by Jeanne Cummings, deputy bureau chief, Wall StreetJournal, Washington, will look at what it would take to achieve a world without disease.Can we marshal the resources, brainpower and policies to prevent and halt the progressionof disease? Ann Cary, RN, MPH, Ph.D., FNAP, dean, university of Missouri-Kansas CitySchool of Nursing and Health Studies; Francis S. Collins, M.D., Ph.D., director, NationalInstitutes of Health; Mikael Dolsten, M.D., Ph.D., president of worldwide research &development, Pfizer; William N. Hait, M.D., Ph.D., global head, Janssen Research & Devel-opment, Janssen Pharmaceutical Companies of Johnson & Johnson; Iris Loew-Friedrich,M.D., chief medical officer, UCB; David E. Neal, CBE, FMedSci FRCS, senior vice presidentof global academic research, Elsevier; and Gary Reedy, chief executive officer, AmericanCancer Society are the panelists.

Pfizer Inc is the lead sponsor of the event. Panel sponsors include AdvaMed, Amgen,Celgene Corporation, Elsevier, Janssen Pharmaceutical Companies of Johnson andJohnson, PCORI and UCB. For more information and a full list of sponsors, visitresearchamerica.org/forum.

National Health Research Forum continued from page 1

4 R E S E A R C H ! A M E R I C A

* indicates that program level is reported in this chart** indicates that budget authority is reported in this chart

AgencY

nih*

cDc*

FDA**

nsF*

AhRQ**

$ chAnge FY16-17

$2.03 billion

-$0.12 billion

$0.03 billion

$0.01 billion

-$0.01 billion

% chAngeFY17-16

6.0%

-1.7%

1.1%

0.1%

-3.1%

Join us September 11-12 to #RaisetheCapsWith congressional FY18 budget negotiations underway, Research!America will behosting a digital advocacy initiative to urge Congress to #RaisetheCaps on September 11-12. The 2011 budget Control Act (bCA) established austerity-level federal spending, and inFY18 the sequestration budget caps or automatic spending cuts for federal agencies willbe back in full force. unless, that is, advocates can convince Congress to #RaisetheCaps.Sequestration ties policymakers’ hands, preventing them from advancing strategic defenseand non-defense priorities, such as bioterrorism and pandemic preparedness, innovativeresearch to end deadly and debilitating diseases, and strategies to bolster our antibioticssupply against the corrosive effect of drug-resistant “superbugs.”Join us as we call on Congress to forge a bipartisan budget agreement focused on thefuture, not tethered to the past. Research!America’s online portal includes sample socialmedia messages, a letter to send to your representatives, and messages emphasizing theimportance of raising the caps. Learn more and engage with us, visitwww.researchamerica.org/raisethecaps.

ReseARch!AmeRicA’sFY18 Asks

$36.58 billion

$7.85 billion

$2.80 billion

$8.00 billion

$0.36 billion

FY17 Omnibus

$34.11 billion

$7.20 billion

$2.76 billion

$7.47billion

$0.32 billion

Federal Research budget

Scientists as EffectiveGlobal HealthAdvocates

“The public wants to hear fromyou,” Mary Woolley, CEO andpresident of Research!America,explained during avideoconference on August 28with student advocates at theUniversity of California GlobalHealth Institute.

“The best way to connect withsomeone is through the heart,not the mind,” she said,encouraging students to sharetheir story, not just their datawith the public andpolicymakers. Researchers andlawmakers can find commonground on global health issues,she noted. “Our troops are at riskall around the world, includingfrom diseases that aren’tendemic to the u.S. Everyonebenefits from research toeliminate those disease threats.”

using advocacy tools, Woolleysaid scientists can connect withlawmakers and theircommunities, through writingop-eds, hosting communityengagement events, andpublically acknowledging thecongressional champions whohave fought to increase fundsfor research and preserve thework of the FogartyInternational Center. “The mostimportant four words aresearcher can say to the public:I work for you,” she concluded.

For more information aboutuCGHI, visithttp://bit.ly/2epuRDI.

Public Perception of Clinical Trials Appears to ShiftFavorablyMore Americans say they would ‘very likely’participate in a clinical trial if recommended by adoctor, an 11% increase from 2013, according to anew national public opinion survey commissionedby Research!America; and 46% say they admirepeople who volunteer for clinical trials ‘a greatdeal’, a 9% increase.

“The research community is committed to con-ducting safe, ethical, and high-quality clinical trialsand we are gratified that the public’s perception ofclinical trials has moved in a positive direction,”said Doug Peddicord, executive director of the Association of Clinical ResearchOrganizations (ACRO).

An overwhelming majority of respondents (86%) say discussions about clinical trials shouldbe a part of standard of care even as participation rates remain low. While 80% ofrespondents say they have heard of a clinical trial, only 18% say they or someone in theirfamily has ever participated in one.

More than half (55%) of Americans say individuals do not participate because of lack ofawareness and information. In fact, only 19% say their doctor or other health careprofessional has ever talked to them about medical research.

“Development of incentives to drive more discussions between patients and health careprofessionals about the importance of participating in trials could encourage both ill andhealthy individuals to view this as a routine health behavior,” said Mary Woolley, Presidentand CEO of Research!America.

Many Americans are also embracing technology for data sharing. A majority (72%) say theyare likely to use technology such as apps, phones and monitoring devices to share theirpersonal health data for clinical research; and nearly half (47%) say they like having clinicaltrial information/data/results delivered through their phone.

For the full survey, visit http://bit.ly/2grp1Gr.

FY16

$32.08 billion

$7.32 billion

$2.73 billion

$7.46 billion

$0.33 billion

Credit: uCGHI

T H E R E S E A R C H A D V O C AT E 5

MEDIA MATTERS

IN bRIEF

Sequestration budget CapsResearch!America President and CEO MaryWoolley said the budget Control Act of 2011has a damaging effect on the nation’sscientific enterprise in a letter-to-the-editorin The Wall Street Journal. “under the arbi-trary rules of that bill, federal researchagencies like the National Institutes ofHealth are severely underpowered.”

Health DisparitiesIn a Modern Healthcare article,Research!America board member GeorgesBenjamin, M.D., executive director of theAmerican Public Health Association,discussed the stress-induced health effectscaused by racial discrimination, urgingclinicians to help alleviate social inequitiesthat have contributed to disparities inhealth outcomes. "You can call for your

medical society to support things that you know willimprove the health of the population in which you serve."

Federal Funding for ScienceResearch!America’s Vice President of CommunicationsSuzanne Ffolkes was quoted in a Bloomberg BNAarticle regarding the need for increased federal fundingto support science priorities outlined by the White House.

Clinical Trials In a Clinical Leader article, Research!Americaboard member Sudip Parikh, Ph.D., seniorvice president and managing director of DIAAmericas, highlighted trends in clinical trials.“As a whole, remarkable progress is beingmade in all parts of our ecosystem.”

Opioid CrisisResearch!America board member Harold L.Paz, M.D., M.S., EVP and CMO, Aetna, wasquoted in a WFPL (NPR) article aboutAetna’s naloxone donation to first responderagencies in Kentucky to curb opioid-relateddeaths in the state.

Mental HealthIn a Business Insider article,Research!America board member HerbertPardes, M.D., executive vice chairman,board of Trustees, NewYork-PresbyterianHospital, commended Doctors Withoutborders/Médecins Sans Frontières forproviding mental health services andhumanitarian efforts for people living involatile areas around the world.

Science and SocietyResearch!America board member Rush D.Holt, Ph.D., CEO, American Association forthe Advancement of Science (AAAS), wasquoted in Laboratory Equipment magazineabout the Administration’s decision todisband the Federal Advisory Committee forthe Sustained National Climate Assessment. “The capacityto understand and effectively address important policyissues depends on access to relevant scientific andtechnical expertise.”

MedicaidIn an Associated Press article,Research!America board member MarkMcClellan, M.D., Ph.D., director, Duke-Robert J. Margolis, MD, Center for HealthPolicy, Duke University, discussed theimplications of an overhaul of Medicaid.

• Research!America boardmember and APhAexecutive Director GeorgesBenjamin, M.D., receivedthe national medicalAssociation meritoriousservice Award

http://bit.ly/2gqzzoZ

• The national Academies willconvene leaders of businessand industry, federal andstate government, and othersectors for “Revitalizing theuniversity-industry-government Partnership” onnovember 15.

http://bit.ly/2vsAUT0

• Modern Healthcare namedthe“100 most influentialPeople in healthcare,”including Research!Americaboard members JamesMadara, M.D., andGeorges C. Benjamin,M.D.

http://bit.ly/2wTH0MA

• FasterCures will behosting Partnering for Curesin san Francisco, cA onnovember 14, bringingtogether 250 innovatorsfrom across medicalresearch.

http://bit.ly/2eI8UR1

Rush D. Holt, Ph.D.

Harold L. Paz, M.D., M.S.Mary WoolleyPresident and CEO

Sudip Parikh, Ph.D.

Georges Benjamin, M.D.

Mark McClellan,M.D., Ph.D.

Elias Zerhouni, M.D.

6 R E S E A R C H ! A M E R I C A

First In HumanDocumentaryHighlights bench tobedside Patient Care

The National Institutes of Health(NIH) Clinical Center has openedits doors to give the publicunprecedented access toongoing research for the three-part documentary, First inHuman, aired on the DiscoveryChannel throughout August.

Known as building 10, thenation’s largest dedicated clinicalresearch hospital has treatedover half a million patients. Theseries provides an in-depth lookinto clinical trials taking placeinside the bethesda, MD,campus, trials that not onlyinform science but provide hopeto families with loved onessuffering from terminal illnesses.

Narrated by actor Jim Parsons,First in Human has highlightedwhat “bench-to-beside” researchis capable of achieving forpatients with complex diseases.

"The NIH Clinical Center’s morethan 60-year history has resultedin remarkable medical advances,from the first use ofchemotherapy to treat cancer, tothe development of thetechnique to keep the bloodsupply clean and safe fromviruses," NIH Director Francis S.Collins, M.D., Ph.D., said in apress release. “For millions ofpatients around the world, it isknown as the National Institutesof Hope.”

For more information, visithttp://bit.ly/2gq44LG.

Congressional Visits to ResearchFacilities During August Recess Several congressional champions for research touredresearch facilities in their districts during the Augustcongressional recess to reinforce the importance ofrobust federal support for research. Senator Roy Blunt(R-MO) met with researchers at Washington UniversityMedical School in St. Louis on August 8 to discussefforts to increase funding for medical research.

“Exciting health research is being done right here inMissouri at Washington university in St. Louis,” Senatorblunt shared in a Facebook post. “I have visited campuswith National Center for Advancing Translational Sciences Director Dr. Austin to discuss theimpact federal investment is having on the groundbreaking research that’s underway inour state.”

Representative James McGovern (D-MA) visited university of Massachusetts MedicalSchool officials in Worcester on August 16 and called proposed budget cuts to the NationalInstitutes of Health (NIH) “a threat to this city’s and this state’s ability to thrive in the face ofglobal competition.” Rep. McGovern highlighted the fact that Massachusetts ranks first inper-capita research funding from the NIH.

In Gainesville, Florida, Representative Ted Yoho (R-Fl) toured the University of FloridaHealth Cancer Center on August 3. “Our purpose is to find out about the research anddevelopment that they’re doing,” he said. “These guys are on the cutting edge.” Rep. Yohotoured labs and spoke with researchers who conduct clinical trials for difficult to treatcancers.

Research in the Public Context Serving the public interest is a shared responsibility betweenpolicymakers and scientists, said Mary Woolley, CEO andpresident of Research!America during a forum at the StanleyManne Children’s Research Institute. Experts gathered August10 in Chicago to discuss a broad range of topics on the currentstate of medical research including emerging trends andgenerational differences between scientists, public-privatepartnerships, and harnessing the power of technology for healthcare informatics.

Woolley discussed the research enterprise in the context of policydecisions, highlighting the necessity of scientists and advocates for scientists to speak upfor their research to the public and policymakers to ensure robust support for medicalresearch.

Other panelists included Alan Schwartz M.D. Ph.D., professor of pediatrics at WashingtonUniversity School of Medicine, Jeffery Sherman M.D., FACP, chief medical officer andexecutive vice president of Horizon Pharma, and Robert Schmit, customer engineer atGoogle Cloud. “As we think about our transformative imperative of advancing pediatricmedicine and research, this is the context in which [we] are trying to move forward in,” saidThomas Shanley M.D., chief research officer of the Manne Children’s Institute.

Safeguarding biomedical Research Facilities from NaturalDisasters and AttacksMany biomedical research facilities are ill-equipped to withstand natural disasters, such asHurricane Harvey, putting years of research and millions of dollars at risk, according to arecent report by the National Academies of Sciences, Engineering, and Medicine.

The exact scope of Harvey’s damage remains unclear, but past disasters indicate that itcould be far-reaching. In 2012, Hurricane Sandy destroyed more than $20 million worth ofscientific equipment at New York university’s Langone Medical Center, according to Nature,and Tropical Storm Allison caused such severe damage to the University of Texas HealthScience Center at Houston that some were forced to restart their research from scratch.

In the report, Strengthening the Disaster Resilience of the Academic Biomedical ResearchCommunity: Protecting the Nation’s Investment, the National Academies urges institutions toput in place comprehensive and integrative disaster resilience plans; create partnershipswith local, state, and national emergency organizations; and implement mandatorydisaster resilience education and training programs. To learn more, visithttp://bit.ly/2wFUVpa.

Mary Woolley, President & CEO

(L to R) bradley Evanoff, M.D., Washington university;Christopher P. Austin, M.D., National Institutes of Health;Chancellor Mark S. Wrighton; Sen. Roy blunt; and David H.Perlmutter, M.D., Washington university School of Medicine.

As a global biopharmaceutical research company, UCB is committed tomaking an impact on the lives of patients and those who care for them,particularly in the areas of neurology, immunology, and bone. UCB isinspired by patients and driven by science. At UCB, everything starts with asimple question: “how will this deliver value to patients living with severediseases?” The world’s fifth largest biopharmaceutical company, UCB hastwo sites in the U.S. – a U.S. corporate headquarters in Atlanta, Georgia andclinical development in Research Triangle Park in North Carolina.

uCb • Founded: 1928

• Location: Atlanta,Georgia

• Mission:Delivering valueto patients.

MEMbER SPOTLIGHT

As a global biopharmaceutical researchcompany committed to delivering value topatients, research and innovation are criticalto UCB’s success. To do this, uCb engageswith patients, their families, and health careprofessionals.

“We listen and we work collaboratively toaddress patients’ unmet needs,” said PattyFritz, vice president, corporate affairs at uCb.“At uCb we want to enhance ourunderstanding of disease and the real-lifeexperiences of patients so our teams candeliver the right medicine and the right careto the right patient at the right time.”

uCb has more than 7,000 employees aroundthe world working to deliver value topatients. As a company, uCb invests morethan a quarter of its revenue back intoresearch and development.

For uCb, creating value for patients meansfinding unique outcomes that help patientsachieve their goals. To do this, and supportpatients and caregivers on their journey tohave the best individual experience, theiraim is to address outcomes that matter topeople where uCb’s medicines are likely tobe most effective. uCb is continuously work-ing to advance science and embrace newknowledge, leveraging scientific advancesand skills in areas such as genetics, biomark-ers, and human biology.

Recognizing there is no such thing as anaverage patient, uCb uses all the tools,channels, and scientific and technologicaladvances available to develop a betterunderstanding of the expressions of diseaseand embed the real needs of specific patientpopulations in the science and innovationprocess. uCb’s unique patient value modelstarts with patient needs to inform scientificdiscovery to develop innovative solutions todeliver to patients.

Open innovation is a key component ofuCb’s success. by engaging through a modelof open innovation, sharing knowledgeamong experts, they can more rapidly growscientific understanding.

As one example, uCb is partnering with scientists and leading universities, includingHarvard, baylor, and Cornell, to uncover thetherapeutic tools needed to create newmedicines. Instead of one-off partnershipsthat end, these are ongoing collaborationsfor the long haul with the originalinvestigators.

“To be successful, partnership andcollaboration are critical. Our scientistscollaborate with leading researchers fromacademia and industry to advance science,”Fritz continued. She reiterated theimportance of working together across theprivate and public sectors to have thegreatest impact for patients. Fritz concluded,“That’s why organizations likeResearch!America championing theimportance of research in the health careecosystem and the development anddelivery of new medicines for patients is soimportant. We are proud to supportResearch!America’s work advocating for andadvancing health research.”

For more information, visit www.ucb-usa.com.

T H E R E S E A R C H A D V O C AT E 7

SOURCE: A RESEARCH!AMERICA SURVEY OF U.S. ADULTS CONDUCTED INPARTNERSHIP WITH ZOGBY ANALYTICS IN JULY 2017. DUE TO ROUNDING, THETOTAL MAY NOT ADD TO 100%.

Clinical Trial Participation is asValuable as Giving BloodPlease tell me if you agree with the followingstatement — Taking part in clinical trials is asvaluable to our health care system as givingblood.

Patty Fritz

48%Somewhat

agree

27%Strongly

agree11%Somewhatdisagree

9%Not sure

4%Stronglydisagree

PHOTO CREDIT: NATIONAL INSTITUTE OF GENERAL MEDICAL SCIENCES

Urge Congress to #RaisetheCapsAs Congress begins to negotiate the federal budget forfiscal year 2018 (FY18), the austerity level “sequestration”budget caps established under the 2011 Budget ControlAct are once again in force after a partial, two yearreprieve. Unless Congress negotiates anotheragreement to lift these draconian caps, the FY18 budgetfor non-defense agencies and programs will beconstrained to a level even lower than in FY17. Underthat kind of stifling spending limit, Congress simplycannot fulfill its responsibility for advancing the healthand wellbeing of the American people, includingcontinuing to rebuild the long-neglected budget ofthe NIH, equipping the CDC to combat deadlyinfectious health threats and ensuring our otherhealth and research agencies meet their respectivemissions.

Take action now: http://bit.ly/2wTHfHo.

RESEARCHTHE

ADVOCATE

241 18th Street South, Suite 501

Arlington, VA 22202

703-739-2577 phone

703-739-2372 fax

www.researchamerica.org

• September 7, 2017- National Health

Research Forum, Washington, DC,

http://bit.ly/1F1MVZ2

• September 14, 2017- Rally for Medical

Research Hill Day, Washington, DC,

rallyformedicalresearch.org

• September 27, 2017- Golden Goose Awards,

Washington, DC, goldengooseaward.org

• October 1-4, 2017- Association of

Independent Research Institutes Annual

Meeting, Washington, DC, www.airi.org

• October 16, 2017- West Virginia Research

and Innovation, Shepherdstown, WV,

http://bit.ly/2esrks1

• November 15, 2017- Revitalizing the

university-Industry-Government Partnership,

Washington, DC, http://bit.ly/2vsAUT0

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