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 Mary Woolley, President, Research!America Association of University Centers on Disabilities Annual Meeting November 10, 2008, Washington, DC

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! Making 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 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 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

Your Candidates-Your Health Partners

For Barack Obama 2008, Tim Westmoreland, JD For John McCain 2008, Ike Brannon, PhD The New York Times David Leonhardt moderated the event Research!Americas Presidential Health & Economic Policy Discussion 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!Americas 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 cost- effective.

Overarching Messages in this Environment Research helps diminish the costly human toll of disease and disability Its 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 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

Tools You Can Use: Research Funding by State

Tools You Can Use: U.S. Investment in Health R&D Source: Research!America, Investment in U.S. Health Research 2001, 2002, 2004, 2005, 2006, 2007 Tracking Spending by Sector

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 …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 Source: National Survey, 2008 Harris Interactive for Research!America and ScienceDebate2008.com In your opinion, which of the following, if any, are the most serious long-term issues facing the country?

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 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 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 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 Charlton Research Company for Research!America

Americans Rank Scientist as Prestigious Occupation Source: Bridging the Sciences Survey, 2006 Charlton Research Company for Research!America 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}

Most Americans Cant Name a Living Scientist Source: Bridging the Sciences Survey, 2006 Charlton Research Company for Research!America Can you give me the name of a living scientist?

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 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 persistenceit pays off

What Do Researchers, the Media and Public Policymakers Have in Common? Serving the publics 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 nations 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 de- creased to less than 1,000 in 2002 IMAGINE…preventing pre- mature births completely

Intellectual Disabilities THEN…giving aspirin to children was typical. NOW…thanks to research, we know children who take aspirin can develop Reyes 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 publics 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

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, New Chapter: Clinical Research in the Public Eye By Mary Woolley

So, what can each of us do in the next few months to substantially increase the prob- ability 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 So, what can each of us do in the next few months to substantially increase the prob- ability 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, 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 nations health throughout the year.

The audacity of hope! In the end, that is Gods 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, The audacity of hope! In the end, that is Gods 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.