Public Policy Update

CDC Tourette Syndrome Public Health Education and Research Program Funded at $2 million

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. The program has been designed to reach parents, educators, pediatricians, physicians and other health workers in a campaign consistent with the authority and direction of the Children’s Health Act of 2000 and to increase scientific knowledge on the prevalence, risk factors and co-morbidities of TS. According to the CDC website on Tourette Syndrome (TS) data and statistics, data suggests that only half of the children with TS have a diagnosis. Delayed or under diagnosis of TS and Tic Disorders can hinder patients from getting the right treatment. A better understanding of TS can lead to quicker diagnosis, better treatment and increased meeting of patient needs. After attending TS education programming, 94% of medical professionals attending have reported learning more about Tourette Syndrome. As a result, the education of medical professionals and educators is critical to ensuring those diagnosed with TS or Tic Disorders receive the diagnosis, care, treatment and accommodations they need to lead healthy and productive lives. Your letters and emails to your Members of Congress and Senators have made an impact! Thanks to all of you who sent emails and/or the action alert. The FY 2020 appropriations process is right around the corner and we will need your support once again!

National Neurological Conditions Surveillance System Receives Funding

Funding for the National Neurological Conditions Surveillance System (NNCSS) at the CDC was also enacted in the Defense, Labor-HHS-Education Appropriations. We are very grateful that Congress created the National Neurological Conditions Surveillance System in the 21st Century Cures Act and provided $5 million in funding in the FY19 Labor HHS Appropriations. The NNCSS was created to assess a limited number of neurological conditions to learn more about the incidence and prevalence, demographics, geographic, outcome measures and healthcare practices and utilization. We have supported the creation of the NNCSS and it’s funding for years, so we naturally hope that Tourette Syndrome will be one of the neurological conditions assessed. We will work with CDC, Congress and other stakeholders as they develop the program.

Take Action Today

Help us continue our funding efforts by reaching out to your local officials today.