From Research Through Delivery of Care: The Imperative for Advocacy Internal Medicine Grand Rounds

Sponsored byGlobal 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

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.

• Congress is gridlocked

• House Appropriations Committeehasn’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

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

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

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

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

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

Sequestration’s Toll2013

• NIH funded fewer new grants in FY13• Science community furloughed and laid-off • Patients were denied access to clinical

trialsLonger-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)

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

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

• Flat Funding

• Sequester

• Federal Travel Cuts to Participate in Scientific Conferences

The Anti-Innovation Business Plan

The Public: Our Partner in Innovation

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?

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

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

• Endemic, Pandemic, Epidemic

• Surveillance• “Tropical medicine” vs

“global health” • Phase I, II, III • Microscopist

• Basic science, bench science

• Vector• NIH, Extramural,

Intramural• Genetic/Genomic• Low-income settings

Language of Science is Jargon to Non-Scientists (just about everyone

else)

• Clinical research

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

Prep Pointer

• Be safe – Avoid all acronyms

Headline:

“Case Western Center for Global Health and Diseases' growth adds jobs in Cleveland, as researchers work to eradicate illnesses worldwide”

Aug 29, 2013

The Media Can be Instructive: Case In Point - Cleveland Plain Dealer

“…to find an effective, simple way to eliminate a widespread, mosquito-borne illness.”

“…bolster the researchers' reputation - internationally and here at home, …the Center has become an economic driver for the university and the city.”

“Since opening in 2002, researchers have nearly doubled their annual grant funding - $5.6 million to $10 million this year, three new full-time faculty members joined the original staff of six, and the center filled five new administrative positions.”

Clear Language, Important Issues for Cleveland

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…”

“…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

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

Public Opinion Matters

and It is Instructive for the Science

Community

What Do Americans Think?

the Good News…

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. adultsconducted in partnership with Zogby Analytics in December 2012.

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 agreeSomewhat disagreeStrongly disagreeNot sure

Source: A Research!America poll of U.S. adultsconducted in partnership with JZ Analytics in December 2012

What Do Americans Think?

the Bad News…

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. adultsconducted in partnership with Zogby Analytics in January 2014

Most Americans Don’t Know Where Research is Conducted

Can you name any institution, company or organization where medical and health research is conducted?

42%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

Most Americans Can’t Name Living Scientist

Can you name a living scientist? (first volunteered responses)

Source: Your Congress – Your Health Survey, March 2011Charlton Research Company for Research!America

34%66%

Yes

No

Stephen Hawking15%James Watson 1%Jane Goodall 1%Bill Nye

1%Michio Kaku 1%Neil Degrasse Tyson 1%Other 14%

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. adultsconducted in partnership with Zogby Analytics in January 2014

Opinions Split: Do Scientists Communicate Effectively?

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 conductedDon’t know what NIH is Many can’t name a living researcher

A Colossal Disconnect

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

What To Do?

Be an advocate for sufficient funding: speak up, get engaged, reach out Take advantage of teachable moments: popular movies, TV programs like “Monsters Inside Me,” public figures and celebrities like George Clooney who are active in global concerns News stories – West Nile, Dengue outbreaks in Florida, the latest flu strain, NTDs in Texas, drug resistance Help the public ‘connect the dots’

Who are the Key Congressional Decision Makers, 113th Congress?

Rep. Hal Rogers(R-KY)

Chair, HouseAppropriations

Committee

Rep. Jack Kingston(R-GA)

Chair, HouseLHHS Appropriations

Subcommittee

Sen. Barbara Mikulski(D-MD)

Chair, SenateAppropriations

Committee

Sen. Tom Harkin(D-IA)

Chair, LHHS,AppropriationsSubcommittee

• 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

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

Research Creates Good JobsEssential to Make it LocalJobs, Jobs, Jobs Funding amount brought to your institutionEmploy 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?

University of Minnesota NIH Funding

FY 2013 $263,576,394 606 grants

Year end 2013 – University of Minnesota ranked 20th in NIH Funding

“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

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

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…

• The public has to change• Congress has to change• The medical and research

communities have to change

Unprecedented Change…

You Have To Change

Your Call to Action: Advocacy

o Change the culture of medicine and science to one that embraces advocacy

o Model outreach - Reward it - Expect it - Demand it o Grab the reins and reshape what it means to be a global

health professional in today’s world o Actively engage in national policy discussionso What happens in Washington, DC does not stay in

Washington, DC

You Have To Change

o Begin to reshape the culture of what it means to be a global health professional in today’s world

o Actively engage in national policy discussions – what happens in Washington, DC does not stay in Washington, DC

o Model outreach - Reward it - Expect it - Demand it

“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

“Every public health decision is made on a political decision.”

~William Foege, MD, MPH2012 Presidential Medal of Freedom

We need to do a better job:

• of embracing advocacy • of communicating with Congress• of communicating with the media• of communicating with the public

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

Thank you.

Karen A GoraleskiExecutive Director, ASTMH

kgoraleski@astmh.org