Advocate for Tourette

Public Policy and Tourette

The Tourette Association of America’s Public Policy office advocates for policies that support the Tourette Syndrome and Tic Disorder community. We represent the interests of hundreds and thousands of people across the country before Congress, the White House and federal agencies. A crucial part of Advocacy is the network of Chapters and members who work with our office to communicate directly with their elected officials at the federal level.

The issues that the organization monitors and voices views on include: education and disabilities, general health care, funding of research, and prevention of genetic and other forms of medical discrimination.

As a member of several larger Health and Education Coalitions, the Tourette Association advocates for or against specific legislation that would significantly affect people with Tourette and Tic Disorders. The Public Policy Office lobbies specifically for Tourette Syndrome and leads Tourette specific legislative Issues.

The Tourette Association has taken the lead in developing the Tourette Syndrome Caucus made up of members of Congress.

Policy Priorities

• Continued funding of $2 million for the CDC Tourette Syndrome Program which consists of programming and research on public health education, the impact of co-occurring conditions, the work to increase the diagnosis rate and reduce diagnosis time, as well as funding of the Tourette Health Education Program, in partnership with the TAA, which educates doctors, medical professionals, educators, patients and the general public through webinars, support groups, workshops, educational materials and presentations.
• Continued investment in increased funding at the National Institutes of Health’s National Institute of Neurological Disorders and Stroke and the National Institute of Mental Health where Tourette Syndrome research is funded annually in areas including genetic constructs, neuroimaging, deep brain stimulation, brain circuits involved in TS, etc.
• Co-sponsor reintroduction of the Safe Step Act bipartisan bill in the 117th Congress to improve step therapy protocols and ensure patients are able to safely and efficiently access the best treatment for them.
• Support to continue telehealth insurance coverage and availability during the Public Health Emergency (PHE) after the PHE status is removed. Due to a lack of specialists in TS, telehealth is beneficial because it reduces travel costs and time off of work and/or school. Additionally, TS and Tic Disorder patients sometimes do not exhibit their tic symptoms in the physician’s office. Telemedicine would enable TS patients to bring a device to a location where their tics are more representative of their daily experience. Tic severity can vary based on the environment including at home or in public places. This flexibility would give the provider the opportunity to see the tics of their patients and engage with the patient when the symptoms occur.
  • During the COVID-19 pandemic, telehealth coverage was expanded during the public health emergency designation, but that coverage is set to expire at the end of the year.  TAA supports the CONNECT for Health Act (S.1512/H.R.2903) which seeks to ensure that providers and beneficiaries can continue to furnish and utilize, respectively, telehealth services in the Medicare program during and after the conclusion of the COVID–19 pandemic. Additionally the bill expands the use of waivers, removes geographic requirements and expands originating sites.

Advocating for public policies and services that promote awareness, research and support is integral to our mission. Take Action Today!

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