Affecting Public Policy for Voluntary Health Agencies – NORD Perspective Diane E. Dorman Vice President for Public PolicySlide 2
When you hear foot beats, don\'t expect it\'s a steed. It could very well be a zebra Medical School AdageSlide 3
Advocacy Is… Being p olitical with a little "p" Influencing administrative elements Raising mindfulness Being an educator Sharing qualitiesSlide 4
It Also Means "To Lobby"… Standing up for what you think Solving issues Taking a position Changing open observation Influencing open approach Enforcing open arrangementSlide 5
But What About the Big, Bad IRS?…Slide 6
IRC Section 501(c)(3)… An association may not : 1. Take part in carrying on purposeful publicity 2. Endeavor to impact enactment as a generous piece of its exercises .Slide 7
However,… IRC 501(c)(3) open foundations are allowed to campaign the length of they don\'t give "a generous part" of their exercises to endeavoring to impact enactmentSlide 8
You can… Lobby on particular administrative issues, yet not for particular applicantsSlide 9
You Can Make A Difference… Working together, the whole uncommon ailments group can have any kind of effect You can change laws Advocacy is a vote based custom Advocacy discovers genuine arrangementsSlide 10
Policymakers require your skill Lobbying people groups Views of philanthropies are imperative Lobbying propels your cause and manufactures open trustSlide 11
Getting Organized for Advocacy…Slide 12
Organize Internal Decision-Making… Designate a council devoted to settle on choices about open strategy Allocate staff to take a shot at open approach every weekSlide 13
Develop Public Policy Goals… Prioritize – Identify issues influencing your main goal and objectives Pick your fights – screen out inconsequential or minimal issues Stay centeredSlide 14
Be straightforward Ask yourself what\'s in question What information and ability do you have to get the message over?Slide 15
Prepare Staff and Volunteers… Designate no less than one staff individual to take a shot at open strategy issues Budget stores for effort and open arrangement Identify, select and prepare volunteers to bolster promotion and campaigning issuesSlide 16
Be a Team Builder…Slide 17
Identify Stakeholders… Patient gatherings Consumer associations Individuals Legislators Decision-producersSlide 18
Accept individuals for who they are Be interested in new, now and again intense, approaches Challenge dug in, systematized power, without being threateningSlide 19
Believe in individuals\' ability to carry out the occupation and finish Respect others perspectives Don\'t customize contradictionsSlide 20
Allies some of the time differ Don\'t cut off ties Express forceful feelings in ways that reinforceSlide 21
Have a comical inclination – giggling IS the best drug Have the stamina to take part in the ordinarily l o n g battle to accomplish – and keep up – noteworthy change Be interested in advancementSlide 22
Make It Personal… Describe how the enactment sways you When you get an answer, study the contention and negate legitimately, if relevantSlide 23
Your own letter, composed on your stationery, sends a solid message: "I am a constituent. I vote. The issue is vital to my family and me"Slide 24
Communicate! Impart!Slide 25
I Don\'t Know the Name of My Representative or Senators… U.S. Congress: http://www.thomas.gov U.S. Place of Representatives: http://www.house.gov/writerep/U.S. Senate: http://www.senate.gov/general/contact_information/senators_cfm.cfmSlide 26
Write A Letter… When composing a letter or email to your U.S. agents, remember the accompanying dependable guidelines: Stick to 1 subject Be brief Be true Include the bill number and title (i.e. S. 1217/HR 2869, Ending the Medicare Disability Waiting Period Act of 2005Slide 27
Senate The Honorable (congressperson\'s full name) United States Senate Washington, DC 20510 Dear Senator: (senator\'s last name) House The Honorable (agent\'s full name) U. S. Place of Representatives Washington, DC 20515 Dear Representative: (agent\'s last name)Slide 28
What About E-sends?… When tending to an email to an individual from Congress, the body of your message ought to utilize the accompanying organization: Your name Address City, State, Zip Code Dear (title) (last name): Start your message here...Slide 29
Ask for Action…Slide 30
Other Valuable Resources… Don\'t know their telephone numbers? Call the U.S. State house Switchboard at (202) 224-3121 http://www.opensecrets.org - all the data you ever expected to think about political commitments http://www.vote-smart.org/index.phtml - Learn how your delegate or representatives voted on an issue, and much, substantially moreSlide 31
Welcome to My World…Slide 32
Senate Committees… Appropriations Labor, Health and Human Services, Education Subcommittee Jurisdiction – NIH allocations Arlen Specter (R-PA), Chair Tom Harkin (D-IA), Ranking MemberSlide 33
Appropriations Agriculture, Rural Development and Related Agencies Subcommittee Jurisdiction – FDA allotments Robert Bennett (R-UT), Chair Herb Kohl (D-WI), Ranking MemberSlide 34
Health, Education, Labor and Pensions Committee (HELP) Jurisdiction – NIH non-assignment issues Michael Enzi (R-WY), Chair Edward Kennedy (D-MA), Ranking MemberSlide 35
Finance Committee Jurisdiction – Health programs under Social Security and wellbeing programs financed by a particular expense or trust reserve, Social Security Charles Grassley (R-IA), Chair Max Baucus (D-MT), Ranking MemberSlide 36
House Committees… Appropriations Labor, Health and Human Services, Education Subcommittee Jurisdiction – NIH apportionments Ralph Regula (R-OH), Chair David Obey, (D-WI), Ranking MemberSlide 37
Appropriations Agriculture, Rural Development, FDA and Related Agencies Subcommittee Jurisdiction – FDA appointments Henry Bonilla (R-TX), Chair Rosa DeLauro (D-CT), Ranking MemberSlide 38
Energy and Commerce Health Subcommittee Jurisdiction – biomedical innovative work and other non-allotments issues Nathan Deal (R-GA), Chair Sherrod Brown (D-OH), Ranking MemberSlide 39
Ways and Means Committee Jurisdiction – Revenue Measure, Social Security Programs including Medicare Bill Thomas (R-CA), Chair Charlie Rangel (D-NY), Ranking MemberSlide 40
Ways and Means Health Subcommittee Jurisdiction – Programs for giving installments to medicinal services, wellbeing conveyance frameworks or wellbeing research, health care coverage premiums, human services costs Nancy Johnson (R-CT), Chair Pete Stark (D-CA), Ranking MemberSlide 41
The Power of the Many…Slide 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)Slide 43
November 6, 2002 – President Bush signs both the Rare Diseases Act (PL 107-280), and the Rare Diseases Orphan Product Development Act into law (PL 107-281)Slide 44
April 10, 2003, House Resolution 147 presented in the House by Mark Foley Commemorating the 20 th Anniversary of the Orphan Drug Act and the National Organization for Rare Disorders May 19, 2003, Resolution went by a vote of 386 Yeas and 48 NaysSlide 45
July 20, 2003 – Introduction of the Medicare Patient Access to Drugs for Rare Diseases Act of 2003 , HR 2700, Christopher Cox (R-CA)Slide 46
November 3, 2003 – The National Institutes of Health declares the foundation of the Rare Diseases Clinical Research Network $51 million in stipend subsidizing more than 5 years 10 Rare Diseases Consortiums Data and Technology Coordinating Center Trans-NIH Working Group on Rare DiseasesSlide 47
Collaborative Education & Test Translation Program (CETT) Based on NORD dialect incorporated into the U.S. Congressional House Appropriations Committee to address the advancement of analytic tests for uncommon infections ORD built up the CETT Program for Rare Genetic Diseases Pilot system to advance new hereditary test improvement Better comprehension of each uncommon ailmentSlide 48
Purpose of CETT… With contribution from the Trans-NIH Rare Diseases Research Working Group, Federal organizations, proficient affiliations, understanding promotion gatherings, and others, the CETT Program will Develop models to encourage the interpretation of hereditary tests from examination labs to clinical practiceSlide 49
Summary… Making a Difference for the Entire Rare Disease CommunitySlide 50
People Can Change Laws... Be an educator Find genuine arrangements Advance your cause Build open trustSlide 51
It\'s Your Civic Duty… Promote Political Change Legislators need to get re-chose and they give careful consideration to your perspectives and suppositionsSlide 52
The Power of the One… a definitive power of the U.S. Congress to act lives in YOU – not in institutionsSlide 53
Contact Information Diane E. Dorman, Vice President, Public Policy National Organization for Rare Disorders (NORD) 1050 17 th Street, NW, Suite 600 Washington, DC 20036 Phone/(202) 496-1296; Cell/(202) 258-6457 Ddorman@rarediseases.org
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