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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 l.jpg

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 l.jpg

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

Medical School Adage


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Advocacy Is… just might be a zebra

  • Being political with a small “p”

  • Influencing governmental entities

  • Raising awareness

  • Being a teacher

  • Sharing values


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It Also Means “To Lobby”… just might be a zebra

  • Standing up for what you believe

  • Solving problems

  • Taking a position

  • Changing public perception

  • Influencing public policy

  • Enforcing public policy



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IRC Section 501(c)(3)… just might be a zebra

An organization may not:

1. Engage in carrying on propaganda

2. Attempt to influence legislation as a substantial part of its activities.


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However,… just might be a zebra

  • 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


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You can… just might be a zebra

  • Lobby on specific legislative issues, but not for specific candidates


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You Can Make A Difference… just might be a zebra

  • 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


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  • Policymakers need your expertise just might be a zebra

  • Lobbying helps people

  • Views of nonprofits are important

  • Lobbying advances your cause and builds public trust



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Organize Internal Decision-Making… just might be a zebra

  • Designate a committee dedicated to help make decisions about public policy

  • Allocate staff to work on public policy each week


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Develop Public Policy Goals… just might be a zebra

  • Prioritize – Identify issues affecting your mission and goals

  • Pick your battles – screen out unrelated or marginal issues

  • Stay focused


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  • Be honest just might be a zebra

  • Ask yourself what’s at stake

  • What input and expertise do youneed to get the message across?


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Prepare Staff and Volunteers… just might be a zebra

  • 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


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Be a Team Builder… just might be a zebra


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Identify Stakeholders… just might be a zebra

  • Patient groups

  • Consumer organizations

  • Individuals

  • Legislators

  • Decision-makers


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  • Accept people for who they are just might be a zebra

  • Be open to new, sometimes bold, approaches

  • Challenge entrenched, institutionalized power, without being intimidating


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Make It Personal… through

  • Describe how the legislation impactsyou

  • When you receive a reply, studythe argument and refute logically, if applicable


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I Don’t Know the Name of My Representative or Senators… through

  • 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


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Write A Letter… through

  • 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


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Senate through

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)


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What About E-mails?… through

  • 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...



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Other Valuable Resources… through

  • 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



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Senate Committees… through

  • Appropriations Labor, Health and Human Services, Education Subcommittee

    • Jurisdiction – NIH appropriations

    • Arlen Specter (R-PA), Chair

    • Tom Harkin (D-IA), Ranking Member


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  • Finance Committee Agencies Subcommittee

    • 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


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House Committees… Agencies Subcommittee

  • Appropriations Labor, Health and Human Services, Education Subcommittee

    • Jurisdiction – NIH appropriations

    • Ralph Regula (R-OH), Chair

    • David Obey, (D-WI), Ranking Member


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  • Energy and Commerce Health Subcommittee Related Agencies Subcommittee

    • Jurisdiction – biomedical research and development and other non-appropriations issues

    • Nathan Deal (R-GA), Chair

    • Sherrod Brown (D-OH), Ranking Member


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  • Ways and Means Committee Related Agencies Subcommittee

    • Jurisdiction – Revenue Measure, Social Security Programs including Medicare

    • Bill Thomas (R-CA), Chair

    • Charlie Rangel (D-NY), Ranking Member


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  • Ways and Means Health Subcommittee Related Agencies 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


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The Power of the Many… Related Agencies Subcommittee


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  • August 3, 2001 -- Introduction of the Related Agencies SubcommitteeRare 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)


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  • 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


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Collaborative Education & Test Translation Program (CETT) announces the establishment of the Rare Diseases Clinical Research Network

  • 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


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Purpose of CETT… announces the establishment of the Rare Diseases Clinical Research Network

  • 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


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Summary… announces the establishment of the Rare Diseases Clinical Research Network

Making a Difference for the Entire Rare Disease Community


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People Can Change Laws... announces the establishment of the Rare Diseases Clinical Research Network

  • Be a teacher

  • Find real solutions

  • Advance your cause

  • Build public trust


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It’s Your Civic Duty… announces the establishment of the Rare Diseases Clinical Research Network

  • Promote Political Change

  • Legislators have to get re-elected and they pay close attention to your views and opinions


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The Power of the One… announces the establishment of the Rare Diseases Clinical Research Network

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


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Contact Information announces the establishment of the Rare Diseases Clinical Research Network

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@rarediseases.org


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