From Research Through Delivery of Care: The Imperative for Advocacy


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Internal Medicine Grand Rounds
Presentation delivered by ASTMH Executive Director Karen A. Goraleski
University of Minnesota - February 27, 2014

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  • Pleased to be here -- in part because unique opportunity to be here when you are welcoming new Dean Brooks Jackson … global health experience, vision, leadership, excellence, global viewFits so well with U Minn a leader in global health, especially in tropical medicine – so much leadership of ASTMH is here: leadership in medical education and research for global health Continuum – research – delivery of care– health services research
  • Disappointed to see what is happening in Washington DCWe expect more from our elected leaders Feels like there is inattention to what gridlock is doing to our nationREPUBLICAN House Approps
  • Science itself is at risk!
  • Congressionally appropriated funds are VERY low -- does Congress know value of CDC? Division of Parasitic Diseases and Malaria at CDC has had the same budget since 2004 in terms of appropriated funding.
  • Week sequester hit – UA to DCA
  • AmerSctyBiochem and Molec Bio
  • The ONE Campaign
  • Dr Randy W Schekman Born in St. Paul
  • Dr. James Rothman
  • Coffee is good/bad eggs are good/bad recent stories – vitamins help/ don’t really help Spill over effect to all research … go to more of this point on next slide
  • 1 more – next slide --- no acronyms
  • Make the impact of this easy to findBe the one that connects the dots
  • Poll result earlier - Those with the most to lose? You - funding; public – better health
  • Do you know these people? We regularly see Speaker Boehner (R), Majority Leader Eric Cantor (R) and their counterparts in the Senate, Majority Leader Harry Reid (D) and Majority Whip Dick Durbin (D –IL) …. Do you recognize these names and faces – you should. The hold the purse strings for funding for NIH and CDC. FDA under Ag and Army and Navy under DoD
  • Strong allies in MN – you have a history of leadership in domestic and global health McCollum Democrat, 7th term A big deal -- HELP – oversees key legal issues such as civil rights, consumer protection and judicial nominations Help them to connect the dots – give them the info they need.Thank them for funding!
  • National, big picture messages
  • Connect the dots …… Not just your NIH dollars – but the indirect economic impact , too They are elected by their own constituents – help them make the case
  • IOM report was ground-shaking for the medical community… some refused to accept the report and loudly denounced it and its findings The naysayers were looked upon as irrelevant …. The genie was out of the bottle Add to this the growing attention to costs of health care
  • Medical EDUCATION community too Last point – goes to next slide
  • Global health professional – academic, clinician, working in the field at an NGO, or in a government agency …..
  • Next slide – discourse
  • Discourse WITH and SERVICE TO society = advocacy From research ….through delivery of care …through health services research….
  • From Research Through Delivery of Care: The Imperative for Advocacy

    1. 1. From Research Through Delivery of Care: The Imperative for Advocacy Internal Medicine Grand Rounds Sponsored by Global Health Pathway, Department of Medicine Division of Global Pediatrics Center for Global Health and Social Responsibility University of Minnesota - February 27, 2014 Karen A. Goraleski Executive Director, ASTMH
    2. 2. Disclosure Information Karen A. Goraleski Internal Medicine Grand Rounds I have no financial relationships to disclose. I will not discuss off-label use and/or investigational use in my presentation.
    3. 3. • Congress is gridlocked • House Appropriations Committee hasn’t appropriated any money since 2011 (instead Continuing Resolutions) • Open seats on House Appropriations Committee for several months until December — previously one of most sought after committee assignments Washington, DC
    4. 4. Jan 17, 2014 Omnibus Appropriations Bill Signed into Law • Continued funding for all agencies through Sept 30, 2014 • NIH: o $1 billion increase over FY 2013 post-sequestration level o BUT – this is a cut overall from FY 2013 pre- sequestration o Since FY 2010 NIH funding mostly stagnant or seen very slight increases
    5. 5. Young Scientists At Risk • In 1982, scientists under age 36 comprised 18% of all NIH primary investigators • By 2011, scientists under age 36 comprised 3% of all NIH primary investigators Source: Society for Neuroscience
    6. 6. Jan 17, 2014 Omnibus Appropriations Bill Signed into Law: CDC • Mixed results • $567 million increase over FY 2013 post- sequestration level • FY 2014 total agency funding appears much higher due to inclusion of funding for Prevention and Public Health Fund • Since 2004 - Division of Parasitic Diseases and Malaria has had same funding in terms of Congressionally appropriated funds
    7. 7. ASTMH statement: “The government’s one-size- fits-all travel a detriment to our nation’s scientific enterprise and will result in slow scientific innovation and a negative economic impact on the United States and the world." US Senate Committee on Homeland Security and Governmental Affairs Senate Hearing: Examining Conference and Travel Spending Across the Federal Government (January 14, 2014) Chairman - Sen. Tom Carper (DE) Ranking member – Sen. Tom Coburn (OK) Federal Travel Cuts to Conferences
    8. 8. Sequestration - Budget Enforcement Mechanism • Draconian measure put in place by the 2012 bi-partisan Super Committee • Was never meant to happen • Budget Control Act placed budget caps for discretionary funding for next 10 years (beginning in 2013) • Recent budget deal reconfigured the cap for FY14 and FY15 – coming in under the cap, thus no additional cut
    9. 9. Sequestration’s Toll 2013 • NIH funded fewer new grants in FY13 • Science community furloughed and laid-off • Patients were denied access to clinical trials Longer-term • Uncertainty • Young scientists leaving the field • Scientists relocating out of the U.S. • ASTMH: young scientists looking for other career options Source: NIH; ―Unlimited Potential, Vanishing Opportunity‖ (ASBMB)
    10. 10. 2013 Nobel Prize: Physiology or Medicine “Winning made me reflect on how my original proposal might have fared in today’s depressed funding climate. It would have been much, much more difficult to get support.” ~Randy W. Schekman, PhD 1978 - first major grant was NIH
    11. 11. 2013 Nobel Prize: Physiology or Medicine “Would I have been able to have the initiative, to take the risk? I really am very concerned I would not have been.” ~James E. Rothman, PhD
    12. 12. • Flat Funding • Sequester • Federal Travel Cuts to Participate in Scientific Conferences The Anti-Innovation Business Plan
    13. 13. The Public: Our Partner in Innovation
    14. 14. What Can Fuel Public Confusion? May 17, 2012 Oct 27, 2011 May 16, 2012 Can drinking too much coffee kill you? A new study reports that excessive coffee – four cups a day – is harmful, but only to those under 55. How likely is this?
    15. 15. • Public is understandably confused by the three steps forward/two steps back dynamic process of science. • How do you address this? – “This is science in real time.” • Medical/Science community has a responsibility to help clarify – with the media and the public • If not you, then who? Result: Frustration with Conflicting Reports
    16. 16. Confusion About ―Tropical‖ Medicine • Those diseases are far away - we will never have them here • “Tropical” – Phew! … that’s not us! • Hygiene - huh? • Lack of fundamental knowledge about disease and transmission • NOT top of mind for most everyone but you: 24 hours to anywhere in the world; Peace Corps and military in parts of the world with endemic tropical disease; international commerce – eg, shipping containers, old tires – ripe breeding grounds
    17. 17. • Endemic, Pandemic, Epi demic • Surveillance • “Tropical medicine” vs “global health” • Phase I, II, III • Microscopist • Basic science, bench science • Vector • NIH, Extramural, Intramura l • Genetic/Genomic • Low-income settings Language of Science is Jargon to Non- Scientists (just about everyone else) • Clinical research
    18. 18. Prep Pointers • Know your audience • Your goal is: improved understanding of what you do and why you do it • Why should your audience care about what you are saying? How does it connect to them? • Tell your story, not your data
    19. 19. Prep Pointer • Be safe – Avoid all acronyms
    20. 20. Headline: “CaseWesternCenterforGlobalHealthandDiseases' growthaddsjobsinCleveland,asresearchersworkto eradicateillnessesworldwide” Aug 29, 2013 The Media Can be Instructive: Case In Point - Cleveland Plain Dealer
    21. 21. “…tofindaneffective,simplewaytoeliminate awidespread,mosquito-borneillness.” “…bolstertheresearchers'reputation-internationallyandhereat home,…theCenterhasbecomeaneconomicdriverforthe universityandthecity.” “Sinceopeningin2002,researchershavenearlydoubledtheir annualgrantfunding-$5.6millionto$10millionthisyear,three newfull-timefacultymembersjoinedtheoriginalstaffofsix,and the centerfilledfivenewadministrativepositions.” Clear Language, Important Issues for Cleveland
    22. 22. Help Journalists Paint a Picture for the Reader, Viewer, Listener • “parts of the world that are remote, poor and often road-less…” • “fever, malnutrition and a grotesque swelling of the limbs and genitals…” • “People were bitten by average of 40,000 to 50,000 mosquitoes a year in the villages [he]worked in.” • “Tiny threadlike worms…”
    23. 23. “…using two anti-parasitic drugs, ivermectin (which may sound familiar to dog owners as a heartworm treatment) and …” “This is a big issue in infectious disease, because nobody’s going to support this indefinitely,” he said… It’s like getting a vaccine every year — you need 80-90% coverage. … That’s not going to work in Papua New Guinea, and it’s not going to work in Cleveland Heights either, because people are just not going to participate in it…” Make the Story Relatable
    24. 24. Add to your “what you do”: • Section written for patients, public, the media • Why are you doing this work? • Research: what is the goal? If a incremental outcome, what is long range goal? • If federally funded – why is this a good use of US taxpayer dollars? • Why is this being done in Minnesota? How will Minnesota benefit? Who Looks at Your Faculty/Research Profile – Make it Work for Others
    25. 25. Public Opinion Matters and It is Instructive for the Science Community
    26. 26. What Do Americans Think? the Good News…
    27. 27. Do you believe that we are making enough progress in medical research in the U.S.? 25% 55% 20% Yes No Not sure Majority: Medical Research is Not Making Sufficient Progress Source: A Research!America poll of U.S. adults conducted in partnership with Zogby Analytics in December 2012.
    28. 28. Most Agree: Basic Research is Necessary Do you agree or disagree with the following statement? ―Even if it brings no immediate benefits, basic scientific research that advances the frontiers of knowledge is necessary and should be supported by the federal government.‖ 32% 42% 11% 6% 10% Strongly agree Somewhat agree Somewhat disagree Strongly disagree Source: A Research!America poll of U.S. adults conducted in partnership with JZ Analytics in December 2012
    29. 29. What Do Americans Think? the Bad News…
    30. 30. What is the name of the government agency that funds most of the medical research paid for by taxpayers in this country? 16% 16% 19% 15% 1% 33% National Institutes of Health Food and Drug Administration Dept. of Health and Human Services Centers for Disease Control and Prevention Other Don't know Few Americans Recognize the National Institutes of Health Source: A Research!America poll of U.S. adults conducted in partnership with Zogby Analytics in January 2014
    31. 31. Most Americans Don’t Know Where Research is Conducted Can you name any institution, company or organization where medical and health research is conducted? 41% 59% I can I cannot Mayo Clinic 10% CDC 9% NIH 7% Johns Hopkins 6% St. Jude 4% Pfizer 3% American Cancer Society 3% Merck 2% Duke Univ./Med. Ctr. 1% OR Heath & Sci. Univ. 1% UCSF 1% Other 52% Source: National Public Opinion Poll, October 2011, JZ Analytics for Research!America
    32. 32. Most Americans Can’t Name Living Scientist Can you name a living scientist? (first volunteered responses) Source: Your Congress – Your Health Survey, March 2011 Charlton Research Company for Research!America 34%66% Yes No Stephen Hawking 15% James Watson 1% Jane Goodall 1% Bill Nye 1% Michio Kaku 1% Neil Degrasse Tyson 1% Other 14%
    33. 33. In general, do you believe scientists effectively communicate the impact of their work on the nation’s health and the economy? 31% 35% 34% Yes No Not sure Source: A Research!America poll of U.S. adults conducted in partnership with Zogby Analytics in January 2014 Opinions Split: Do Scientists Communicate Effectively?
    34. 34. A Colossal Disconnect The public: –Wants and expects research to deliver for them and their families –It’s not making enough progress But… –They don’t know where research is conducted –Don’t know what NIH is –Many can’t name a living researcher
    35. 35. A Colossal Disconnect And the scientific community doesn’t do a very good job at informing the public about medical and science issues.
    36. 36. What To Do? • Beanadvocateforsufficientfunding:speakup,get engaged,reachout • Takeadvantageofteachablemoments:popular movies, TVprogramslike“MonstersInsideMe,”public figuresandcelebritieslikeGeorgeClooney whoare activeinglobalconcerns • Newsstories–WestNile,Dengueoutbreaksin Florida,thelatestflu strain,NTDsinTexas,drug resistance • Helpthepublic‘connectthedots’
    37. 37. Who are the Key Congressional Decision Makers, 113th Congress? Rep. Hal Rogers (R-KY) Chair, House Appropriations Committee Rep. Jack Kingston (R-GA) Chair, House LHHS Appropriations Subcommittee Sen. Barbara Mikulski (D-MD) Chair, Senate Appropriations Committee Sen. Tom Harkin (D-IA) Chair, LHHS, Appropriations Subcommittee
    38. 38. • House Appropriations – Defense Subcommittee • Congressional Caucus on Global Health Co-Chair • Congressional Anti-Human Trafficking Caucus • Peace Corps Caucus Senator Al Franken • Committee on Health Education, Labor and Pensions (HELP) • Committee on Judiciary • Strong supporter of immigrant and refugee health
    39. 39. What Resonates Today with Congress? • Maintaining US leadership on the global stage in innovation and technology • National security – keeping America and the troops safe • Healthier countries less susceptible to strife and conflict, more likely to build their economies which could lead to less dependence on the US and perhaps one day – can be economic partners
    40. 40. Research Creates Good Jobs Essential to Make it Local • Jobs, Jobs, Jobs • Funding amount brought to your institution • Employ how many? • Indirect economic impact: – Moved from another state? Bought a home? Bought a car? Kids in local schools? Pay taxes? – Utilize local lab supplier or other vendors, contractors? – Utilize Fed X, UPS, or local coffee shop?
    41. 41. University of Minnesota NIH Funding FY 2013 $263,576,394 606 grants Year end 2013 – University of Minnesota ranked 20th in NIH Funding
    42. 42. ―It’s the smart thing to do and it’s the right thing to do.‖ Addresses public concerns about the use of taxpayer dollars Conveys the moral, humanitarian mission which is the real driver for these efforts
    43. 43. A Time of Unprecedented Change for Medicine and Research 15 years ago – beginnings of now dramatic erosion of physician autonomy 2009 IOM Report: To Err is Human: Building A Safer Health System Outside stakeholders in science and medicine much more muscular in their involvement in clinical medicine Skyrocketing and seemingly runaway health care costs
    44. 44. Medicine and research now viewed in terms of limited resources and priorities A time for competence:  Priorities: examined carefully and through different lenses  Have to prove you are using resources wisely  What is the ROI? Unprecedented Change…
    45. 45. • The public has to change • Congress has to change • The medical and research communities have to change Unprecedented Change…
    46. 46. You Have To Change • YourCalltoAction:Advocacy o Changethecultureofmedicineandsciencetoone thatembracesadvocacy o Modeloutreach-Rewardit-Expectit-Demandit o Grabthereinsandreshapewhatitmeanstobea globalhealthprofessionalintoday’sworld o Activelyengageinnationalpolicydiscussions o WhathappensinWashington,DCdoesnotstayin Washington,DC
    47. 47. You Have To Change o Begintoreshapethecultureofwhatitmeansto beaglobalhealthprofessionalintoday’sworld o Activelyengageinnationalpolicydiscussions– whathappensinWashington,DCdoesnotstayin Washington,DC o Modeloutreach-Rewardit-Expectit-Demandit
    48. 48. “Scientists are obliged to make the case for science to lawmakers. …If I had to do it all over again I would spend more time talking to general audiences and public officials, penning op-eds.” ~J. Michael Bishop, MD Nobel laureate March 15, 2011
    49. 49. “Every public health decision is made on a political decision.” ~William Foege, MD, MPH 2012 Presidential Medal of Freedom
    50. 50. We need to do a better job: • of embracing advocacy • of communicating with Congress • of communicating with the media • of communicating with the public
    51. 51. You have a duty and commitment to lifelong learning and the translation of that expertise into discourse with and service to society.
    52. 52. Thank you. Karen A Goraleski Executive Director, ASTMH