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Influencing Public Policy for Voluntary Health Agencies NORD Perspective

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Influencing Public Policy for Voluntary Health Agencies NORD Perspective. Diane E. Dorman ... Arlen Specter (R-PA), Chair. Tom Harkin (D-IA), Ranking Member ... – PowerPoint PPT presentation

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Title: Influencing Public Policy for Voluntary Health Agencies NORD Perspective


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

2
  • When you hear hoof beats, dont assume its 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 whats 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 peoples capacity to do the job and
    follow through
  • Respect others points of view
  • Dont personalize disagreements

20
  • Allies sometimes disagree
  • Dont 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 Dont Know the Name of My Representative or
Senators
  • U.S. Congress http//www.thomas.gov
  • U.S. House of Representatives http//www.house.go
    v/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
  • House
  • The Honorable (representatives full name)
  • U. S. House of Representatives
  • Washington, DC 20515
  • Dear Representative (representatives last name)
  • Senate
  • The Honorable (senators full name)
  • United States Senate
  • Washington, DC 20510
  • Dear Senator
  • (senators 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
  • Dont 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

51
Its Your Civic Duty
  • Promote Political Change
  • Legislators have to get re-elected and they pay
    close attention to your views and opinions

52
The Power of the One
  • The ultimate authority of the U.S. Congress
    to act resides in YOU not in institutions 

53
Contact Information
Diane E. Dorman, Vice President, Public
PolicyNational Organization for Rare Disorders
(NORD)1050 17th Street, NW, Suite
600Washington, DC 20036Phone/(202) 496-1296
Cell/(202) 258-6457 Ddorman_at_rarediseases.org
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