Public Policy Blog

  • Social Media for Advocacy

  • Policy Successes

    Are there any Tourette-specific Policy Successes? Yes, The Tourette Association of America has witnessed the powerful role policy has had on developing and implementing best practices for Tourette Syndrome. In the year 2000, Tourette Syndrome was included for the first time ever in federal legislation when Congress passed and President Bill Clinton signed H.R. 4365, the Children’s Health Act of 2000 (Public Law 106-310). Tourette Syndrome was given a Title in the law (Title 23); “Children and Tourette Syndrome Awareness.” This law is what authorized grants and programs to educate and train physicians, health care workers, educators, parents and the community about Tourette Syndrome at the US Center for Disease Control and Prevention (CDC); now in its 12th year program partnership with the Tourette Association. Again, in 2006, The Tourette Association witnessed policy and put in place best practices in supporting students with disabilities when Tourette Syndrome was included within the Individual with Disabilities Education Act (IDEA). Most recently. In 2013, the second federal legislation known as, the Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act was introduced to bolster efforts toward research for Tourette Syndrome at the National Institute of Health (NIH). That same year, we witness the

  • What is the importance of Public Policy?

  • The Role of Congress

    How does Congress Serve constituents in the District/State? Members of Congress provide direct services better known as, “Constituent Services.” Every House Representative and Senators have employees who do constituent service; helping people with unresolved problems that may involve a federal agency. These district/state staff members often refer to their efforts on your behalf as casework and treat it as a social worker would; keeping files on each person who seeks help. Many offices have casework specialists who work in one or two areas and have longstanding relationships with officials at federal agencies. Most often, these problems include; sorting out Social Security issues, federal disability filings, Internal Revenue Service issues, veterans’ benefits, mortgage issues and even, immigration requests. Who should file for casework or seek constituent services; anyone who has a question regarding federal resources or need federal assistance immediately should contact their Members of Congress locally in the district and state office to get answers more quickly.

  • Impact for Advocacy

  • Public Policy Update

    The President recently signed into law the Defense, Labor-HHS-Education Appropriations for Fiscal Year (FY) 2019 which included the continued funding of $2 million for the Centers for Disease Control and Prevention (CDC) Tourette Syndrome Public Health Education and Research Program. This program is critical for the Tourette Syndrome (TS) and Tic Disorder community.

  • Ensuring Access to Treatment – Drug Pricing

    You likely have heard about the President’s Blueprint to Lower Drug Prices and Reduce Out of Pocket Costs in the news.  The President requested comments on a broad range of potential changes to increase competition and reduce drug prices.  One thing is clear, how drug prices are created is not simple or very transparent and will depend on many factors, including your prescription benefit manager (PBM).  This complex system has been built over time and many parts of the system are interwoven and impact each other directly or indirectly.  As such, it is extremely important that any actions taken to improve the system are fully understood and that all impacts, direct and indirect, are fully assessed before enacting change.  TAA submitted comments to the Administration requesting that patient needs should be a top priority and have requested that any further action follows the official rule-making process which would allow further comments during the process.  TAA will continue to work with the National Health Council and other like-minded patient groups to ensure our voices are heard as the process moves forward.   TAA Comments HHS Blueprint to Lower Drug Prices and Reduce Out of Pocket Costs   Meeting your Representative and

  • August Facebook Live

  • NIH Funding

  • TAA Submits Written Testimony for Labor Health and Human Services