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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

Influencing Public Policy for Voluntary Health Agencies – NORD Perspective

Diane E. DormanVice 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
When you hear hoof beats, don’t assume it’s a horse. It just might be a zebra

Medical School Adage

advocacy is
Advocacy Is…
  • Being political with a small “p”
  • Influencing governmental entities
  • Raising awareness
  • Being a teacher
  • Sharing values
it also means to lobby
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
irc section 501 c 3
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.

  • 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
you can
You can…
  • Lobby on specific legislative issues, but not for specific candidates
you can make a difference
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
Policymakers need your expertise
  • Lobbying helps people
  • Views of nonprofits are important
  • Lobbying advances your cause and builds public trust
Organize Internal Decision-Making…
  • Designate a committee dedicated to help make decisions about public policy
  • Allocate staff to work on public policy each week
develop public policy goals
Develop Public Policy Goals…
  • Prioritize – Identify issues affecting your mission and goals
  • Pick your battles – screen out unrelated or marginal issues
  • Stay focused
Be honest
  • Ask yourself what’s at stake
  • What input and expertise do youneed to get the message across?
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
identify stakeholders
Identify Stakeholders…
  • Patient groups
  • Consumer organizations
  • Individuals
  • Legislators
  • Decision-makers
Accept people for who they are
  • Be open to new, sometimes bold, approaches
  • Challenge entrenched, institutionalized power, without being intimidating
Believe in people’s capacity to do the job and follow through
  • Respect others points of view
  • Don’t personalize disagreements
Allies sometimes disagree
  • Don’t burn bridges
  • Express strong emotions in ways that strengthen
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
make it personal
Make It Personal…
  • Describe how the legislation impactsyou
  • When you receive a reply, studythe argument and refute logically, if applicable
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”
i don t know the name of my representative or senators
I Don’t Know the Name of My Representative or Senators…
  • U.S. Congress:
  • U.S. House of Representatives:
  • U.S. Senate:
write a letter
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

The Honorable (senator’s full name)

United States Senate

Washington, DC 20510

Dear Senator:

(senator’s last name)


The Honorable (representative’s full name)

U. S. House of Representatives

Washington, DC 20515

Dear Representative: (representative’s last name)

what about e mails
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...
other valuable resources
Other Valuable Resources…
  • Don’t know their phone numbers? Call the U.S. Capitol Switchboard at (202) 224-3121
  • -- all the information you ever needed to know about political contributions
  • -- Learn how your representative or senators voted on an issue, and much, much more
senate committees
Senate Committees…
  • Appropriations Labor, Health and Human Services, Education Subcommittee
    • Jurisdiction – NIH appropriations
    • Arlen Specter (R-PA), Chair
    • Tom Harkin (D-IA), Ranking Member
Appropriations Agriculture, Rural Development and Related Agencies Subcommittee
    • Jurisdiction – FDA appropriations
    • Robert Bennett (R-UT), Chair
    • Herb Kohl (D-WI), Ranking Member
Health, Education, Labor and Pensions Committee (HELP)
    • Jurisdiction – NIH non-appropriation issues
    • Michael Enzi (R-WY), Chair
    • Edward Kennedy (D-MA), Ranking Member
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
house committees
House Committees…
  • Appropriations Labor, Health and Human Services, Education Subcommittee
    • Jurisdiction – NIH appropriations
    • Ralph Regula (R-OH), Chair
    • David Obey, (D-WI), Ranking Member
Appropriations Agriculture, Rural Development, FDA and Related Agencies Subcommittee
    • Jurisdiction – FDA appropriations
    • Henry Bonilla (R-TX), Chair
    • Rosa DeLauro (D-CT), Ranking Member
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
Ways and Means Committee
    • Jurisdiction – Revenue Measure, Social Security Programs including Medicare
    • Bill Thomas (R-CA), Chair
    • Charlie Rangel (D-NY), Ranking Member
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
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)
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)
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
July 20, 2003 – Introduction of the Medicare Patient Access to Drugs for Rare Diseases Act of 2003, HR 2700, Christopher Cox (R-CA)
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
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
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


Making a Difference for the Entire Rare Disease Community

people can change laws
People Can Change Laws...
  • Be a teacher
  • Find real solutions
  • Advance your cause
  • Build public trust
it s your civic duty
It’s Your Civic Duty…
  • Promote Political Change
  • Legislators have to get re-elected and they pay close attention to your views and opinions
the power of the one
The Power of the One…

The ultimate authority of the U.S. Congress to act resides in YOU – not in institutions 

contact information
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

[email protected]