Raise Your Voice: The Politics of Autism

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The Politics of Autism
National Autism Association Wendy Fournier, President
The Ultimate Inspiration
We are all advocates
Political Advocacy 101
How to get involved
Stay informed Join advocacy groups email lists to receive political
action alerts Get to know your legislators and their staff Personal visits, phone calls and faxes are more effective than e-mails Schedule an in-person meeting Contact info is available at www.congress.gov
Scheduling Meetings with Legislators
Ask to speak with your rep’s Health Staffer or
Political Advocacy 101
Legislative Aide (L.A.) to set up an appointment with your representative Remember, they work for YOU. They are readily available to hear the concerns of their constituents Give your reason for requesting a meeting If your rep is not available for a personal meeting, ask the Health L.A. to meet with you Wrap up your phone call within 5 minutes
Political Advocacy 101
Meeting Preparation
Be well-prepared Include information specific to your state Decide on one specific “ask” Limit yourself to three talking points to maintain focus View pending legislation at http://thomas.loc.gov Meetings normally last 20-30 minutes. Your planned
talking points should take no longer than 20 minutes to present allowing time for questions/discussion Prepare an information packet to leave behind
Political Advocacy 101
At Your Meeting
Start with a brief personal story to underscore the
importance of the issue Stay focused on your “ask” and your three talking points If you receive a positive response, ask how you can best follow up If you do not receive a positive response, ask what additional information they may need Autism is a national crisis - ask your Member of Congress to take a significant leadership role
Political Advocacy 101
Before You Leave…
Request a time line on when you will receive an
answer to your request Leave behind your information packet and your contact information Thank the attendees for their time Remember that this is just the first step in developing a positive, ongoing relationship
Political Advocacy 101
Follow Up After Your Meeting…
Send a thank you note after the visit Make an attempt to attend meetings and fundraisers
for your representative Invite your rep to attend local autism-related events in your community Contact the L.A. periodically until you get an official answer to your request
Political Advocacy 101
Homework Assignment
Three great bills pending in the House H.R. 1973 - The Vaccine Safety and Public
Confidence Assurance Act of 2007 H.R. 881 - The Mercury Free Vaccines Act of 2007 H.R. 2832 - The Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2007 Check http://thomas.loc.gov to see if your rep has co-sponsored these bills
Pending Legislation
H.R.1973
Introduced by Congressman Dave Weldon (R-FL) The Vaccine Safety and Public Confidence Assurance Act of
2007 Transfers vaccine-safety regulatory functions now conducted by the CDC to a new independent entity, the Agency for Vaccine Safety Evaluation AVSE Requires that those who monitor vaccine safety and conduct vaccine research must be free of conflicts of interest Places oversight of the VSD, the nation’s primary resource for vaccine safety information, under the AVSE, assuring the public that analysis and reporting of vaccine safety will be unbiased.
Pending Legislation
H.R.1973
Provides for membership on the Advisory Council by those
most affected by vaccine safety policy: vaccine-injured individuals and their parents. Requires public access to data Requires transparency in decision-making by government regulators Requires accountability by the government to the public that it serves
Pending Legislation
H.R.881
The Mercury Free Vaccines Act of 2007 introduced by
Congressman Dave Weldon (R-FL) Significant progress made since 1999 to remove Hg No law or regulation that would prohibit reintroduction of Hg. EPA estimates that as many as one in six children born with blood level of Hg that exceeds EPA’s safety threshold “Cumulative exposures to mercury, a neurotoxin, are known to cause harm, particularly in young children and pregnant women.” “Taking steps to reduce mercury exposures through vaccines is an important way to reduce direct exposures to mercury and mercury compounds.”
Pending Legislation
H.R.2832
H.R.5940 – Introduced last year by Congresswoman
Carolyn Maloney (D-NY) Requires NIH to conduct a comparative study of total health outcomes for vaccinated and unvaccinated populations - this bill will be reintroduced soon and may have a new bill number For bill text go to http://thomas.loc.gov
The Centers for Disease Control
Inherent Conflicts of Interest Responsible for Both Safety and Promotion of
What’s going on at CDC?
Vaccines Refuses to Acknowledge the Autism Epidemic Better Diagnosing? This Agency Continues to Fail our Children Where is the Sense of Urgency?
Advisory Committee on Immunization Practices
Sets vaccine policy which is then adopted by
What’s going on at CDC?
professional societies and individual states ACIP policy is always accepted as the gold standard for immunization practices Refuses to State Preference for Mercury-Free Vaccines due to market impact and perception concerns Conflicts of Interest Encouraged Disgraceful Display of Corruption 3 Public Meetings per Year at CDC Campus is Atlanta
What’s going on in Washington?
The Interagency Autism Coordinating Committee
What is the IACC? Who serves on the committee? When does the IACC meet? How you can be involved
What’s going on in Washington?
The IACC Autism Research Matrix
What is the Autism Research Matrix? A Work in Progress Seeking Public Input
What’s going on in Washington?
The IACC Autism Research Matrix
Identify Environmental Factors Don’t wait for Genetics Exposure History Database including co-occurring medical conditions Early intervention should include biomedical treatment Study vaccinated/unvaccinated populations Educate personnel about reducing toxic exposures and
supporting biomedical approaches including nutritional Educate physicians and create standards of care
What’s going on in Washington?
Green Our Vaccines Rally
Led by Jenny McCarthy and Jim Carrey Event will take place on June 4th, 2008 Thousands will march to the Capitol for the rally and
meetings with legislators For event details visit www.tacanow.com Ask your reps to attend
Together, anything’s possible. Thank you!
Web: www.NationalAutism.org Phone: 877-622-2884 Wendy Fournier Email: wendy@nationalautism.org