The document discusses the challenges facing medical research funding in the United States, including stagnant and declining budgets at agencies like NIH and CDC due to sequestration and flat funding. It notes that young scientists are being discouraged from entering fields that rely on government grants. The speaker calls on scientists and medical professionals to become advocates for their work by better communicating with Congress, the media, and the public about the importance of research and its impact on health and the economy. The talk emphasizes the need for the research community to change its culture and embrace ongoing advocacy and public outreach.

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. 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. • 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. 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. 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. 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

8. ASTMH statement: “The government’s one-size-
fits-all travel policy...is 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

9. 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

10. 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)

12. 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

13. 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

14. • Flat Funding
• Sequester
• Federal Travel Cuts to Participate
in Scientific Conferences
The Anti-Innovation Business Plan

15. The Public: Our Partner in Innovation

16. 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?

17. • 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

18. 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

19. • 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

20. 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

21. Prep Pointer
• Be safe – Avoid all acronyms

22. Headline:
“CaseWesternCenterforGlobalHealthandDiseases'
growthaddsjobsinCleveland,asresearchersworkto
eradicateillnessesworldwide”
Aug 29, 2013
The Media Can be Instructive:
Case In Point - Cleveland Plain Dealer

23. “…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

24. 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…”

25. “…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

26. 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

27. Public Opinion Matters
and
It is Instructive
for the Science Community

28. What Do Americans Think?
the Good News…

29. 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.

30. 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

31. What Do Americans Think?
the Bad News…

32. 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

33. 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

34. 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%

35. 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?

36. 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

37. A Colossal Disconnect
And the scientific community doesn’t do a
very good job at informing the public about
medical and science issues.

38. 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’

39. 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

40. • 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

41. 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

42. 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?

43. University of Minnesota NIH Funding
FY 2013 $263,576,394 606 grants
Year end 2013 – University of Minnesota
ranked 20th in NIH Funding

44. ―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

45. 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

46. 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…

47. • The public has to change
• Congress has to change
• The medical and research
communities have to change
Unprecedented Change…

48. 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

49. You Have To Change
o Begintoreshapethecultureofwhatitmeansto
beaglobalhealthprofessionalintoday’sworld
o Activelyengageinnationalpolicydiscussions–
whathappensinWashington,DCdoesnotstayin
Washington,DC
o Modeloutreach-Rewardit-Expectit-Demandit

50. “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

51. “Every public health
decision is made on a
political decision.”
~William Foege, MD, MPH
2012 Presidential Medal of Freedom

52. We need to do a better job:
• of embracing advocacy
• of communicating with Congress
• of communicating with the media
• of communicating with the public

53. You have a duty and commitment to
lifelong learning and the translation
of that expertise into discourse with
and service to society.

55. Thank you.
Karen A Goraleski
Executive Director, ASTMH
kgoraleski@astmh.org