Tourette Syndrome: The need for awareness and patient access

Dr. Keith Coffman, child neurologist, director of the movement disorders program, director of the Tourette Syndrome Center of Excellence, member of the Tourette Association of America

Earlier today, I was fortunate to speak with Congress about Tourette syndrome, and discuss the importance of awareness and how to improve patient access to quality clinical care. The Tourette Association of America (TAA) invited me, and several of my colleagues around the country, to attend the briefing in Washington, D.C. to help shine a light on the neurological disorder that causes individuals to make sounds and movements – tics – that they can’t control.

Lack of Recognition

One of the big issues I shared with Congress was the lack of recognition of how common it is for a child to have Tourette. I started child neurology training in 2003 and at that time it was thought be a rare disorder. We now know Tourette effects one in 100 people, which is as common as epilepsy and almost as common as autism (according to the CDC, one in 59 children are diagnosed with autism), yet there is little awareness of Tourette compared to the other two disorders.

Unfortunately, what most people know about Tourette is how it's been displayed in comedy movies. It’s usually someone with coprolalia, which is when a person uses profanity profusely. The fact is, coprolalia occurs in less than 20 percent of people with Tourette, so a majority of patients will never develop it.

Kids Misdiagnosed

Because of the lack of awareness, a number of children are misdiagnosed. The TAA recently did a survey and found a child waits an average of five years before being diagnosed with Tourette. That’s unacceptable.

There is no test for Tourette, so many times children that snort, sniff or continually clear the throat are treated for allergies instead of tics. When allergy treatment doesn’t work, the child is treated for chronic sinus issues. Some patients will even have a tonsillectomy and adenoids removed, which again doesn’t help because they have Tourette.

Other times, tics are dismissed altogether. Pediatricians will tell parents not to worry because the tics go away. Long-term that’s true for most people, but it could also get a whole lot worse.

Neuropsychiatric Comorbidities

While no two children with Tourette syndrome are alike, nearly 86 percent will have very significant neuropsychiatric comorbidities, such as ADHD, anxiety, OCD and intermittent explosive behavior that is often unrecognized, under recognized or dismissed.

That same TAA survey found the most common thing patients struggle with is not the tics, but the neuropsychiatric comorbidities and the lack of them being treated or recognized. I speak with area schools on a regular basis, because while educators know about ADHD, most don't know what anxiety or OCD looks like for an elementary or middle school student.

Repeatedly, we have patients who are punished at school for involuntary tics because they make sounds in the classroom or roll their eyes and are considered to be “disrespectful.” It’s not surprising many of these kids become depressed, think of self-harm and have suicidal thoughts, because these are kids and teens who clearly act different and sound different from their classmates.

Again, awareness is key. The more primary health providers and educators know about Tourette, the sooner these kids can get the help they need.

The Stigma

There is a great deal of stigma for those living with Tourette, because many people believe it’s a psychiatric disease. In truth, it's a neurologic disorder characterized by involuntary movements that happens to have a high amount of psychiatric comorbidities with it. We need to start thinking of Tourette in the same vein as Huntington and Parkinson’s disease, which are also neurologic disorders.

The way I approach the stigma with patients, families and other physicians is I tell them psychology is just neurology too small to see on an MRI, and all behavior comes from the brain. If you don't have a brain, you can’t have behavior.

Patient Access

The other big takeaway for Congress is understanding the challenges we face when it comes to patient access. Comprehensive Behavioral Intervention Therapy (CBIT) is one of the most scientifically-proved treatments for tics. The non-invasive sensory-motor therapy trains the patient to become more aware of the tic and to perform a competing behavior when the patient feels the urge to tic. CBIT has been shown as effective as any medication used to treat tics, but it’s difficult to find therapists outside large major cities trained to teach CBIT.

While telemedicine would be effective, the laws are such that physicians have to be licensed in the state where the patient is located. Unfortunately, there are no doctors CBIT-certified in Iowa or Nebraska, so patients have to travel long distances to receive treatment.

The other issue we face is with private insurance laws. We consistently see patients from outside of Kansas and Missouri because we’re the only Tourette center in the Midwest, but depending where our patients are from they’re not fully covered. While we can see the child and make a diagnosis, we can’t write prescriptions because we’re not a health care provider in the state where the child resides. The patient’s family is faced with going back to the doctor that referred the child to our center and ask the physician to prescribe the medications. Many times, physicians aren’t comfortable doing this since they’re not familiar with Tourette, the treatment or the medications.

This is a big issue that affects people’s lives every day, and we need to figure out how to get these kids the help we know they need. We’ve got to get rid of state line issue in health care, because it's compromising care. This is not exclusive to Tourette, but all of health care. People are not able to seek the care they need because of what state they live in and our kids deserve better.

Learn more about the Tourette Syndrome Center of Excellence at Children’s Mercy, one of only nine centers nationally and the only center focused exclusively on pediatric patients.

Learn more about Tourette Syndrome and Tic Disorders.