Transcript Breakthrough Advocacy for Medical Research

Where Do We Go From Here?
Advocacy for Research After the
Election
Mary Woolley, President, Research!America
Association of University Centers on
Disabilities Annual Meeting
November 10, 2008, Washington, DC
Making History
Never forget that research
changes the history of health and
well-being. Because you conduct
research on behalf of the
intellectually disabled, you
understand advocacy.
Now is your time to make
history!
“I am a long‐time supporter
of mental health parity. … I
strongly support mental
health fairness and parity of
mental health coverage in
all federal health programs.”
– President-Elect Barack
Obama, in his response to the
2008 Your Candidates-Your
Health voter education
initiative
“I believe that the U.S. has
the potential to lose its global
competitive edge in science,
technology and innovation
unless we take steps to
change the current trend. …I
strongly support increasing
funding for the NIH.”
– President-Elect Barack
Obama, Your Candidates-Your
Health response
Your Candidates-Your Health 2008
Candidate Outreach
– All presidential and Congressional
candidates were invited to respond to a
questionnaire based on suggestions made by
readers of PARADE magazine
– Extensive public outreach through our
advocacy network and almost 50 sponsoring
partners to encourage candidates to respond
www.yourcandidatesyourhealth.org
Your Candidates-Your Health Partners
Research!America’s Presidential
Health & Economic Policy Discussion
For Barack Obama 2008,
Tim Westmoreland, JD
For John McCain 2008,
Ike Brannon, PhD
The New York Times’ David
Leonhardt moderated the event
Westmoreland:
Obama will double research
funding within10 years.
Research!America: 19 Years of Putting
Research on the Public Agenda
• Non-profit alliance with 500 member
organizations drawn from academia,
business, patient organizations and scientific
societies representing more than 125 million
Americans
• Distinguished, all-volunteer board includes
former elected and appointed officials,
media and public relations leaders, and
leaders from alliance member organizations
Research!America’s
Mission
• Make medical and health
research, including research to
prevent disease, disability and
injury, a much higher national
priority
Research!America Goals:
• Ensure that the public hears
about research and its benefits
• Achieve more funding for
medical and health research
• Advocate a policy climate that
stimulates rather than impedes
research
• Empower others to advocate for
medical and health research
2009 Research Budget
Update
Continuing Resolution (CR) in effect
until March 6, 2009, keeping
funding at FY08 levels
Potential for $1.9 billion for NIH in
new economic stimulus package
Snapshot of Current Advocacy
Environment
• ECONOMIC DOWNTURN
• Public expectations are very high for new
President/Congress re: health care reform
• Pent up demand for other under-funded
priorities, incl. infrastructure and
education
• 18 month window, then re-election focus
• Researchers resist becoming advocates
Overarching Messages in this
Environment
• Research is a solution
• Scientific innovation fuels economic
growth, both short and long term, even as it
can help heal the broken aspects of our
health care system, making it more costeffective.
Overarching Messages in this
Environment
• Research helps diminish the costly human
toll of disease and disability
• It’s time to reestablish the value of science
advice and science advisers in public policy
making
Research!America Provides
Tools You Can Use
In this Environment
•
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Economic Impact Reports
U.S. Investment in Health R&D
Fact Sheets
Public Opinion Poll Data
Advocacy Training and
Communications Workshops
• Your Congress-Your Health
Tools You Can Use:
State Economic Impact Data
Profiles of each state
Highlights from local economic impact studies
Evidence that research creates good jobs
www.researchamerica.org/state_econ
Tools You Can Use:
Research Funding by State
www.researchamerica.org/state_funding
Tools You Can Use:
U.S. Investment in Health R&D
Tracking Spending by Sector
Source: Research!America, Investment in U.S. Health Research
2001, 2002, 2004, 2005, 2006, 2007
Research Takes Cents
• Americans spent more than $17
billion on video games,
hardware in 2007
• That could fund the Eunice
Kennedy Shriver National
Institute of Child Health and
Human Development at current
levels for more than 14 years!
Sources: NPD Group, 2008; NIHFY08
Tools You Can Use:
Fact Sheets
Tools You Can Use:
Research!America Poll Data:
• Commissioning public opinion
polls on research issues for more
than 16 years:
• National Polls
• State-Based Polls
• Issue-Specific Polls
“…public
sentiment is
everything. With
public sentiment,
nothing can fail;
without it nothing
can succeed.”
–Abraham Lincoln
“As a member of the U.S.
Senate, it is incumbent
upon me to hear the public
voice about important
issues. Research!America,
through its national surveys,
gives me added evidence of
the importance of medical
and health research to our
citizenry.”–Sen. Arlen Specter
(R-PA), Ranking Member,
LHHS Subcommittee
Most Important Long-Term Challenges
Facing Our Nation
In your opinion, which of the following, if any, are the
most serious long-term issues facing the country?
Source: National Survey, 2008
Harris Interactive for Research!America and ScienceDebate2008.com
U.S. Does Not Have Best
Health Care System
Do you believe that the United States has the best health care
system in the world?
Source: National Poll, 2008, fielded September 24-29
Charlton Research Company for Research!America
Research Is A Solution to
Rising Health Care Costs
When it comes to rising health care costs, would you say research to
improve health is part of the problem or part of the solution?
Source: National Poll, 2008, fielded September 24-29
Charlton Research Company for Research!America
Americans Say Not Enough Spent on
Research
In 2007, the U.S. spent 5 and a half cents of each health dollar on
research to prevent, cure and treat disease and disability. Do you
think that is too much, the right amount, or not enough?
Source: National Poll, 2008, fielded September 24-29
Charlton Research Company for Research!America
Americans Willing to Pay
More for Medical Research
Would you be willing to pay $1 per week more in taxes if you were
certain that all the money would be spent for additional medical
research, or not?
Source: National Poll, 2008, fielded September 24-29
Charlton Research Company for Research!America
Americans Rank Scientist
as Prestigious Occupation
I am going to read off a number of different occupations. For each, would you tell me if
you feel it is an occupation of very great prestige, considerable prestige, some prestige
or hardly any prestige at all? {percent saying “very great prestige”}
Source: Bridging the Sciences Survey, 2006
Charlton Research Company for Research!America
Most Americans Can’t Name
a Living Scientist
Can you give me the name of a living scientist?
74%
None/don't know
8%
Stephen Hawking
Albert Einstein
1%
Bill Gates
1%
Robert Jarvick
1%
Other
15%
Source: Bridging the Sciences Survey, 2006
Charlton Research Company for Research!America
“The people we really listen
to are the voters. Not once
have I heard anyone at a
public meeting ask me,
‘what are you doing for
medical research?’ Not
even from a researcher!”
– Rep. Mike Simpson (ID),
Appropriations Committee
Member
Tools You Can Use:
Research!America Advocacy
Training for Researchers
• Underscoring the power of public
support
• Clarifying the distinction between
advocacy and lobbying
• Sharing effective messages and
techniques
• Fundamentals of building
relationships with policymakers
Tools You Can Use:
Research!America Advocacy
Training for Researchers
• Fundamentals of building
relationships with the media
• Reinforcing the power of saying
thank you
• Encouraging persistence—it pays
off
What Do Researchers, the
Media and Public
Policymakers Have in
Common?
Serving the public’s interest
“I work for you.”
What Can You Do?
• Make it impossible to ignore
research
• Make it impossible to be an
elected official without working
to help solve the nation’s
problems by putting research to
work
• Position AUCD for impact
When talking to the public,
decision-makers, and the
media, frame your message
with impact:
Medical and health research
solves problems – it saves lives,
improves quality of life, helps
drive the economy and helps
reduce health care costs
Prematurity
THEN… deaths of newborns from
respiratory distress syndrome
totaled more than 10,000 a year in
the 1950s
NOW…with artificial lung
surfactant, deaths of premature
newborns from RDS have decreased to less than 1,000 in 2002
IMAGINE…preventing premature births completely
Intellectual Disabilities
THEN…giving aspirin to children
was typical.
NOW…thanks to research, we
know children who take aspirin
can develop Reye’s syndrome,
which may cause brain damage.
IMAGINE…what other intellectual
disability-causing conditions and
diseases could be prevented
with more research.
Purposeful Communication to
Elected Officials
• Now more than ever, we need to be
smart about spending the public’s
money.
• If we put research to work, we can
do a better job helping the
intellectually disabled live their best
life and contribute to society.
• What are we waiting for?
Purposeful Communication to
Elected Officials
• Connect your work to enduring
American values: Research seeks
new possibilities; translates hope to
help; research seeks answers and
solutions.
• “My research is part of the solution
to keeping health costs down and
enabling more Americans to
contribute to society.”
Tools You Can Use:
Your Congress-Your Health 2009
• Outreach to Members of Congress
All 540 members of Congress will
be invited to participate
• Extensive public outreach through our
advocacy network and sponsoring partners’
networks to encourage responses
www.yourcongressyourhealth.org
Lead the Movement to Make Advocacy
Part of the Research Training Curriculum
Principles of Clinical and Translational
Science, David Robertson and
Gordon H. Williams, Editors. Elsevier,
2008.
New Chapter:
Clinical Research in the Public Eye
By Mary Woolley
What You Can Do NOW
“So, what can each of us do in the next few
months to substantially increase the probability that we will have elected officials
who will make research a very high
priority? I'm talking about much more than
… paying your dues to a professional
society or making a contribution to a
voluntary health association.”
The Honorable John Edward Porter
Research!America Chair, in Science magazine,
September 26, 2008
What You Can Do NOW
• Tell your story – to the Congress;
to the media; to your family,
friends and neighbors. Enlist them
as fellow advocates!
• Invite your member of Congress
and Senators and their staffs to
visit your lab/clinic.
What You Can Do NOW
• Use, and spread the word about,
www.yourcongressyourhealth.org
• Work with Research!America::
– new fact sheets (vaccines, autism,
intellectual disabilities…)
– join our advocacy network
– visit our Web site/Facebook
page/blog
– become a member of our alliance
As Thanksgiving
approaches,
Research!America and
the leading U.S. public
health organizations
ask Americans to give
special thanks to their
state and local “public
health heroes” who
protect the nation’s
health throughout the
year.
www.publichealththankyouday.org
“The audacity of hope! In
the end, that is God’s
greatest gift to us, the
bedrock of this nation; the
belief in things not seen;
the belief that there are
better days ahead.”
Senator Barack Obama (IL), speaking at the
2004 Democratic Convention, July 27, 2004.
www.researchamerica.org