As the annual Tardive Dyskinesia Awareness Week begins again, Neurocrine Biosciences is continuing its work to improve understanding of the condition and available treatments.
This time around, the drugmaker recruited a familiar face to the cause: Carnie Wilson, member of Wilson Phillips and daughter of the Beach Boys’ Brian Wilson.
Neurocrine on Tuesday unveiled a new campaign in which the “Hold On” singer will encourage people with tardive dyskinesia (TD) to break down stigma against the condition by speaking openly about their symptoms and seeking support and treatment—including with Neurocrine’s Ingrezza, which in 2017 became the first drug approved by the FDA to treat TD.
TD is linked to the use of antipsychotic medications to treat various mental illnesses and causes involuntary, repetitive movements of the face, torso and other body parts. It’s estimated to affect at least 800,000 adults in the U.S., per Neurocrine, and while it’s typically not reversible, certain treatments can help manage symptoms.
Wilson has not been diagnosed with TD and doesn’t use Ingrezza, but she’s spoken often about her mental health and the importance of asking for help.
“Mental health is a topic close to my heart, and I’m grateful for the opportunity to partner with Neurocrine Biosciences to spread hope and positivity by sharing stories, connecting with individuals in the mental health community and encouraging those experiencing uncontrollable movements to speak with their healthcare provider about appropriate treatment,” she said in a statement.
“I’ve seen the difference that seeking support and treatment can make, and I want people who may be struggling with tardive dyskinesia to know they do not need to suffer in silence,” she added.
The “ConnectING with Carnie” campaign page, hosted within the official Ingrezza website, includes testimonials from people with TD about the ways their lives changed after speaking up about their symptoms. There are also videos of Wilson chatting with a psychiatrist about her mental health advocacy and with a TD patient about the latter’s experiences seeking first a diagnosis and then treatment with Ingrezza. More videos are on the way, according to the site.
A day before the launch of its campaign with Wilson, Neurocrine kicked off TD Awareness Week—which takes place every year during the first full week of May—with the release of findings from a new survey about life with the condition.
Comprising 150 U.S. adults with TD, the survey found that 80% said they wished they’d been screened for TD earlier, and nearly 90% said they wished their doctors had discussed available treatment options sooner.
The survey showed not only that TD impacts individuals’ day-to-day abilities, with many respondents reporting needing to ask for help with daily activities or being unable to perform certain job functions, but also that the condition comes with sizable stigma and resulting psychological toll.
More than 80% of those surveyed said their uncontrolled movements made them feel judged and stared at, bringing unwanted attention and incorrect assumptions from strangers. Meanwhile, at least 40% of respondents said their TD had led them to avoid leaving their homes, going to work or school and socializing with others.
Experts cited by Neurocrine in Monday’s release suggested that greater awareness of how antipsychotic medications can cause TD, along with routine screenings and earlier diagnoses, could lead to better support and symptom management.