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Influencing Public Policy for Voluntary Health Agencies – NORD Perspective . Diane E. Dorman Vice President for Public Policy. When you hear hoof beats, don’t assume it’s a horse. It just might be a zebra Medical School Adage. Advocacy Is…. Being p olitical with a small “p”

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Influencing Public Policy for Voluntary Health Agencies – NORD Perspective


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    1. Influencing Public Policy for Voluntary Health Agencies – NORD Perspective Diane E. DormanVice President for Public Policy

    2. When you hear hoof beats, don’t assume it’s a horse. It just might be a zebra Medical School Adage

    3. Advocacy Is… • Being political with a small “p” • Influencing governmental entities • Raising awareness • Being a teacher • Sharing values

    4. It Also Means “To Lobby”… • Standing up for what you believe • Solving problems • Taking a position • Changing public perception • Influencing public policy • Enforcing public policy

    5. But What About the Big, Bad IRS?…

    6. IRC Section 501(c)(3)… An organization may not: 1. Engage in carrying on propaganda 2. Attempt to influence legislation as a substantial part of its activities.

    7. However,… • IRC 501(c)(3) public charities are permitted to lobby as long as they do not devote “a substantial part” of their activities to attempting to influence legislation

    8. You can… • Lobby on specific legislative issues, but not for specific candidates

    9. You Can Make A Difference… • Working together, the entire rare diseases community can make a difference • You can change laws • Advocacy is a democratic tradition • Advocacy helps find real solutions

    10. Policymakers need your expertise • Lobbying helps people • Views of nonprofits are important • Lobbying advances your cause and builds public trust

    11. Getting Organized for Advocacy…

    12. Organize Internal Decision-Making… • Designate a committee dedicated to help make decisions about public policy • Allocate staff to work on public policy each week

    13. Develop Public Policy Goals… • Prioritize – Identify issues affecting your mission and goals • Pick your battles – screen out unrelated or marginal issues • Stay focused

    14. Be honest • Ask yourself what’s at stake • What input and expertise do youneed to get the message across?

    15. Prepare Staff and Volunteers… • Designate at least one staff person to work on public policy issues • Budget funds for outreach and public policy • Identify, recruit and train volunteers to support advocacy and lobbying issues

    16. Be a Team Builder…

    17. Identify Stakeholders… • Patient groups • Consumer organizations • Individuals • Legislators • Decision-makers

    18. Accept people for who they are • Be open to new, sometimes bold, approaches • Challenge entrenched, institutionalized power, without being intimidating

    19. Believe in people’s capacity to do the job and follow through • Respect others points of view • Don’t personalize disagreements

    20. Allies sometimes disagree • Don’t burn bridges • Express strong emotions in ways that strengthen

    21. Have a sense of humor – laughter IS the best medicine • Have the stamina to engage in the usually l o n g struggle to achieve – and maintain – significant change • Be open to innovation

    22. Make It Personal… • Describe how the legislation impactsyou • When you receive a reply, studythe argument and refute logically, if applicable

    23. Your personal letter, written on youryour stationery, sends a strong message: “I am a constituent. I vote. The issue is very important to my family and me”

    24. Communicate! Communicate!

    25. I Don’t Know the Name of My Representative or Senators… • U.S. Congress: http://www.thomas.gov • U.S. House of Representatives:http://www.house.gov/writerep/ • U.S. Senate: http://www.senate.gov/general/contact_information/senators_cfm.cfm

    26. Write A Letter… • When writing a letter or e-mail to your U.S. representatives, keep the following rules of thumb in mind: • Stick to 1 subject • Be brief • Be factual • Include the bill number and title (i.e. S. 1217/HR 2869, Ending the Medicare Disability Waiting Period Act of 2005

    27. Senate The Honorable (senator’s full name) United States Senate Washington, DC 20510 Dear Senator: (senator’s last name) House The Honorable (representative’s full name) U. S. House of Representatives Washington, DC 20515 Dear Representative: (representative’s last name)

    28. What About E-mails?… • When addressing an e-mail to a member of Congress, the body of your message should use the following format: • Your name • Address • City, State, Zip Code • Dear (title) (last name): • Start your message here...

    29. Ask for Action…

    30. Other Valuable Resources… • Don’t know their phone numbers? Call the U.S. Capitol Switchboard at (202) 224-3121 • http://www.opensecrets.org -- all the information you ever needed to know about political contributions • http://www.vote-smart.org/index.phtml -- Learn how your representative or senators voted on an issue, and much, much more

    31. Welcome to My World…

    32. Senate Committees… • Appropriations Labor, Health and Human Services, Education Subcommittee • Jurisdiction – NIH appropriations • Arlen Specter (R-PA), Chair • Tom Harkin (D-IA), Ranking Member

    33. Appropriations Agriculture, Rural Development and Related Agencies Subcommittee • Jurisdiction – FDA appropriations • Robert Bennett (R-UT), Chair • Herb Kohl (D-WI), Ranking Member

    34. Health, Education, Labor and Pensions Committee (HELP) • Jurisdiction – NIH non-appropriation issues • Michael Enzi (R-WY), Chair • Edward Kennedy (D-MA), Ranking Member

    35. Finance Committee • Jurisdiction – Health programs under Social Security and health programs financed by a specific tax or trust fund, Social Security • Charles Grassley (R-IA), Chair • Max Baucus (D-MT), Ranking Member

    36. House Committees… • Appropriations Labor, Health and Human Services, Education Subcommittee • Jurisdiction – NIH appropriations • Ralph Regula (R-OH), Chair • David Obey, (D-WI), Ranking Member

    37. Appropriations Agriculture, Rural Development, FDA and Related Agencies Subcommittee • Jurisdiction – FDA appropriations • Henry Bonilla (R-TX), Chair • Rosa DeLauro (D-CT), Ranking Member

    38. Energy and Commerce Health Subcommittee • Jurisdiction – biomedical research and development and other non-appropriations issues • Nathan Deal (R-GA), Chair • Sherrod Brown (D-OH), Ranking Member

    39. Ways and Means Committee • Jurisdiction – Revenue Measure, Social Security Programs including Medicare • Bill Thomas (R-CA), Chair • Charlie Rangel (D-NY), Ranking Member

    40. Ways and Means Health Subcommittee • Jurisdiction – Programs for providing payments for healthcare, health delivery systems or health research, health insurance premiums, healthcare costs • Nancy Johnson (R-CT), Chair • Pete Stark (D-CA), Ranking Member

    41. The Power of the Many…

    42. August 3, 2001 -- Introduction of the Rare Diseases Act – Senators Orrin Hatch (R-UT) and Edward Kennedy (D-MA) • March 28, 2002 – Introduction of the Rare Diseases Act – John Shimkus (R-IL) • March 28, 2002 – Introduction of the Rare Diseases Orphan Product Development Act – Mark Foley (D-FL)

    43. November 6, 2002 – President Bush signs both the the Rare Diseases Act (PL 107-280), and the Rare Diseases Orphan Product Development Act into law (PL 107-281)

    44. April 10, 2003, House Resolution 147 introduced in the House by Mark Foley Commemorating the 20th Anniversary of the Orphan Drug Act and the National Organization for Rare Disorders • May 19, 2003, Resolution passed by a vote of 386 Yeas and 48 Nays

    45. July 20, 2003 – Introduction of the Medicare Patient Access to Drugs for Rare Diseases Act of 2003, HR 2700, Christopher Cox (R-CA)

    46. November 3, 2003 – The National Institutes of Health announces the establishment of the Rare Diseases Clinical Research Network • $51 million in grant funding over 5 years • 10 Rare Diseases Consortiums • Data and Technology Coordinating Center • Trans-NIH Working Group on Rare Diseases

    47. Collaborative Education & Test Translation Program (CETT) • Based on NORD language included in the U.S. Congressional House Appropriations Committee to address the development of diagnostic tests for rare diseases • ORD established the CETT Program for Rare Genetic Diseases • Pilot program to promote new genetic test development • Better understanding of each rare disease

    48. Purpose of CETT… • With input from the Trans-NIH Rare Diseases Research Working Group, Federal agencies, professional associations, patient advocacy groups, and others, the CETT Program will • Develop models to facilitate the translation of genetic tests from research laboratories to clinical practice

    49. Summary… Making a Difference for the Entire Rare Disease Community

    50. People Can Change Laws... • Be a teacher • Find real solutions • Advance your cause • Build public trust