By Ben Brown
What's commonly shaped, monochromatic, quiet, still, predictable and fits nicely in a small box?
Don't think too hard on that one; I don't know, either. What we can say, with absolute certainty, is it's a terrible way to begin a blogpost seeking to explain how uncommonly shaped, kaleidoscopic, unquiet, kinetic and unpredictable Tourette Syndrome can be for folks living it.
Dab your sweat, though -- we'll try and answer that riddle before we're done.
Until then, I’ll direct you to a post from Tourette Association of America CEO Amanda Talty as just published by the Institute for Patient Access. Amanda does an awesome job economically explaining how widely varying and galaxy-like TS can be person-to-person, and how oversimplification hurts the community.
For instance, she says, close to 90 percent of Touretters have one comorbid condition or more (ADHD, depression, autism and so on) that altogether can make treatment long and labyrinthine.
"Because the syndrome presents differently from person to person, treatment needs to be individualized," writes Amanda. "But just as TV and movies take a narrow view of Tourette, many insurance companies also take a one-size-fits-all approach to treatment for people who live with the syndrome."
That’s a bummer.
"In particular," Amanda continues, "insurers often require people with Tourette Syndrome to follow step therapy protocols, meaning the patient has to try – and fail – on an insurer-preferred medicine before being allowed to use what their doctor prescribed."
On its face, that's pretty bad. But check out the full post for more specific reasons, as listed by Amanda, followed by an appeal to the health care system (and everyone, really) to do better.
That's in part what Tourette Awareness Month (May 15-June 15 each year) is all about and I'm stoked to see so many hands raised and voices loud. That's not a TS joke.
Speaking of jokes, or riddles, rather.
My best guess: cream cheese.
Yeah, I know. Sorry. Thoughts?