1 / 53

Influencing Public Policy for Voluntary Health Agencies – NORD Perspective

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”

RexAlvis
Download Presentation

Influencing Public Policy for Voluntary Health Agencies – NORD Perspective

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  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

More Related