Where Do We Go From Here? Advocacy for Research After the Election

1. Where Do We Go From Here?Advocacy for Research After the Election Mary Woolley, President, Research!AmericaAssociation of University Centers on Disabilities Annual Meeting November 10, 2008, Washington, DC

2. 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!

3. “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

4. “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

5. 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 2008 www.yourcandidatesyourhealth.org

6. Your Candidates-Your Health Partners

7. 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.

8. 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

9. Research!America’s Mission • Make medical and health research, including research to prevent disease, disability and injury, a much higher national priority

10. 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

11. 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

12. 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

13. 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.

14. 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

15. Research!America Provides Tools You Can UseIn 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

16. 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

17. Tools You Can Use:Research Funding by State www.researchamerica.org/state_funding

18. 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

19. 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

20. Tools You Can Use: Fact Sheets

21. 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

22. “…public sentiment is everything. With public sentiment, nothing can fail; without it nothing can succeed.” –Abraham Lincoln

23. “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

24. 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, 2008Harris Interactive for Research!America and ScienceDebate2008.com

25. 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

26. 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

27. 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

28. 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

29. 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, 2006Charlton Research Company for Research!America

30. Most Americans Can’t Name a Living Scientist Can you give me the name of a living scientist? Source: Bridging the Sciences Survey, 2006Charlton Research Company for Research!America

31. “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

32. 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

33. 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

34. What Do Researchers, the Media and Public Policymakers Have in Common? Serving the public’s interest

35. “I work for you.”

36. 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

37. 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

38. 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

39. 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.

40. 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?

41. 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.”

42. Outreach to Members of CongressAll 540 members of Congress will be invited to participate Extensive public outreach through our advocacy network and sponsoring partners’ networks to encourage responses Tools You Can Use:Your Congress-Your Health 2009 www.yourcongressyourhealth.org

44. 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

45. What You Can Do NOW “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 PorterResearch!America Chair, in Science magazine, September 26, 2008

46. 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.

47. 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

48. 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

49. “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.

50. www.researchamerica.org