The Alliance for Patient Access / IfPA’s Patient Access Policy Blog / Tourette Syndrome Awareness Month: A Time to Stop the Stigma

Tourette Syndrome Awareness Month: A Time to Stop the Stigma

Many people think they know Tourette syndrome.  It’s the person who blurts out foul words at inopportune times, like what you see on sitcoms or in movies.  In reality, this particular vocal tic is rare. But the stereotype of people living with Tourette syndrome is unfortunately common.

Setting the record straight is important to advocates.  So is raising awareness about the experiences of those who live with the nervous condition.  And from May 15-June 15, National Tourette Syndrome Awareness Month, that’s the goal.

Individuals with Tourette syndrome have a combination of at least two motor tics and one vocal tic, according to the Tourette Association of America.  Simple motor tics are involuntary movements like excessive blinking or shoulder shrugging, whereas complex motor tics might be twirling or jumping.  Vocal tics are a sound, such as throat clearing or sniffing.  Increasing public awareness about the range and type of tics exhibited by those with Tourette syndrome can help reduce the intense stigma they experience.

Yet stigma is hardly the only challenge that people with Tourette syndrome face.  Access to treatment can also be difficult.  Health plan barriers can complicate getting a physician-prescribed deep brain stimulation treatment or oral medication.

As the Movement Disorders Policy Coalition’s recent white paper describes, some patients face barriers to treatment because of cost-driven, health plan policies.  One such hurdle is step therapy.  Also called “fail first,” it requires patients to try, and fail, on a cheaper medicine before the insurer agrees to pay for what the physician prescribed.  Another barrier is prior authorization.  It requires doctors to gain insurance company approval before patients can begin the prescribed treatment.

Ensuring timely access to treatment along with increasing awareness and reducing stigma are all the more important because Tourette syndrome has no cure.  Accomplishing these feats can improve the lives of the 1/100 school-aged children living with Tourette Syndrome or a Tic Disorder.

To learn more, read “Movement Disorders: Impact and Access to Treatment.”  And join the online conversation about Tourette Syndrome Awareness Month using #TouretteAwareness.

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