MEET AMANDA TALTY
CEO AND PRESIDENT
TOURETTE ASSOCIATION OF AMERICA
Amanda Talty, CEO Tourette Association of America
“TOURETTE IS SO HIGHLY VISIBLE BUT SO OVERLOOKED”
AMANDA TALTY is the CEO and President of the Tourette Association of America (TAA). For almost 50 years the TAA has supported patients and families impacted by Tourette syndrome and tic disorders and funded and advanced new research. Here she talks to Asarina Pharma about the need for better diagnosis, recent milestones in treatment guidelines and the future role of a pharma therapy that could prove itself safe, free of side effects, and able to work effectively in a complex treatment landscape
Few conditions expose their sufferers to such intense social stigma as the common neurological disorder Tourette syndrome (TS). Yet for a condition that is often so highly visible, Tourette is still often overlooked, despite tics beginning to manifest most commonly in childhood and adolescence.
“Imagine your own body betraying you. Constantly and compulsively. No matter where, no matter when. Now imagine it happening as you first start school.”
Amanda TatleyCEO Tourette Association of America
UNDER-DIAGNOSIS IS COMMON
“In the US it takes up to two years on average to get a Tourette diagnosis” says Amanda Talty, “for a five- to eight-year-old child that can feel like a lifetime.”
in the US may be affected by Tourette or persistent tic disorders U.S. CDC (Centers for Disease Control and Prevention.) Previous estimates were 1-in-100
COMPLEX CONDITION - COMPLEX TREATMENT LANDSCAPE
A major factor in non-diagnosis is the complexity of Tourette itself. 86% of Tourette patients have at least one co-occurring disorder, from ADHD to OCD/B, inattention, hyperactivity or childhood conduct disorder. This creates a complex treatment landscape, often obscuring Tourette itself and leading it to go untreated.
Recent genetic research suggests that that TS is not a discrete, unitary condition, but rather covers a spectrum of subtypes across a broad range of compulsive disorders (1). Tourette tics are complex and changeable, changing in type, frequency, and severity over weeks or days. They range from almost imperceptible tics that may disappear quickly, to chronic tics that can cause serious physical injury. The result is an elusive, highly nuanced contrition that is challenging to diagnose.
“Often co-occurring conditions will get diagnosed, but the tic itself will get written off as secondary or something that will go away” says Talty, “if it’s a sniffling tic a pediatrician might send the child to an ENT (Ear Nose or Throat) specialist. If it’s a blinking tic it might be attributed to an allergy and the child sent to an allergist. Almost every family we speak to identifies getting a diagnosis as the number one challenge, and most have had the experience of being bounced between doctors before landing on a neurologist – and it usually is a neurologist – who finally diagnoses them. We hear that a hyper-focus on one thing, be it ADHD or OCD, is a big challenge that often leads to other important symptoms being ignored. Current medication too can sometimes exacerbate one condition over the other – whilst those of us working with TS understand that it’s a soup. You can tease out certain ingredients but ultimately there will always be a whole range of issues involved in Tourette.”
THE NEED FOR A SAFE, STABLE PHARMA SOLUTION AND THE RISE OF CBIT
In 2019 the American Academy of Neurology issued its first treatment guidelines for Tourette. The guideline recommended Comprehensive Behavioral Intervention for Tics (CBIT) as the first-line treatment, and advised neurologists to routinely evaluate people with tics for ADHD, OCD and mood and anxiety disorders.
“Parents want to give their kids something that will maximize their quality of life, but not take anything away. If pharma could develop an effective Tourette drug that had no negative side effects, I think it would have a winner.”
SAFETY: THE #1 PHARMA PRIORITY FOR PARENTS
“What we hear most about when it comes to medication is complaints about side effects,” Talty says. “Patients tell us ‘I want to take a drug that helps me stop my tics but isn’t going to make me gain 50 pounds’ or ‘I want to be able to offer my child a drug that will help them with their ADHD but won’t affect their physical growth because it suppresses appetite.’ Parents are not going to prescribe their children pharmaceutical products if they think the solution is worse than the problem.”.
Today, some commonly prescribed Tourette treatments (anti-psychotic neuroleptics like haloperidol, or Haldol) can have side effects ranging from blurred vision, nausea and diarrhoea to irregular heartbeat and tremors and severe involuntary movement disorders that can themselves be mistaken for Tourette.
Does TAA still hear interest from parents in a safe, effective medication despite these concerns? “Absolutely!” Talty says. “Parents want to give their kids something that will maximize their quality of life, but not take anything away. If pharma could to that, if it could develop an effective Tourette drug that had no negative side effects, I think it would have a winner.”
TOWARDS A PHARMA TREATMENT THAT CAN SUPPORT CBIT
With complex co-conditions in 85% of cases, and CBIT the first-line treatment, any new Tourette therapy would need to be able to fit into a complex treatment landscape. “Most families who have lived with TS for some time understand that there is no magic bullet. There’s never going to be the one thing you take and suddenly everything is 100% perfect.
“That’s the beauty of medication – for those that it works for – it gives someone that space from their tic so they can better focus and learn the lessons that they’re learning,” ”-Amanda Talty, CEO and President Tourette Association of America
REDUCING STRESS AND STIGMA
Social stigma triggers stress which in turn can trigger more tics. Whether teachers or schoolmates, what advice would TAA CEO Amanda Talty give on reducing stress and stigma?
“TAA was started around a kitchen table by a handful of families who needed support and knew there were others out there just like them”, CEO Amanda Talty
Centers of Excellence