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 [phone]
• 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/[phone]
Cell/[phone] Ddorman_at_rarediseases.org