Hallucinations and delusions are some of the least talked-about symptoms of Parkinson’s disease—and, for many, the scariest.
Drugmaker Acadia Pharmaceuticals is trying to change that by encouraging patients to open up about their experiences. And it is turning to storytelling experts at StoryCorps to help.
Acadia enlisted the oral history nonprofit, featured on NPR, for its new “Yours, Truly” campaign to raise awareness about the lesser-known mental symptoms associated with the disease, which 50% of Parkinson's patients experience.
The unbranded effort coincides with Acadia’s new branded DTC campaign for Nuplazid, the only FDA-approved drug to treat Parkinson’s disease psychosis (PDP), which won the FDA nod back in 2016.
Most people are familiar with the tremors and other motor symptoms of Parkinson's. But few have heard of the mental symptoms, and patients often hesitate to bring them up with their doctor for fear of stigma, said Stephanie Fagan, Acadia’s senior vice president of corporate affairs and chief communications officer.
Gus Alva, M.D., an assistant professor of neuroscience at University of California, Riverside’s medical school who is working with Acadia on the campaign, said his Latino patients are especially reluctant to speak out because of cultural taboos.
"They feel so uncomfortable with the theme, they’ll oftentimes try to brush it under the carpet, and that doesn’t help anything,” he said.
That’s why the bilingual campaign website invites patients, in both English and Spanish, to “have a conversation with someone close to you about the impact of Parkinson’s disease on your life.” StoryCorps records the interviews and preserves them in a national archive for future generations.
The campaign kicked off in November during National Family Caregivers Awareness Month with three recorded conversations from the Parkinson’s community. In one recording, husband and wife Darryl and Pam talk about the impact of Darryl's disease and its mental symptoms.
“When you get Parkinson’s, it affects your memory. Most of the time that I have illusions, it’s about people I have lost in memory—parents, friends, uncles,” he says. “I wouldn’t wish this on anyone.”
In another, sisters Tara and Kerry reminisce about their late mother and how she once thought she saw a bear while sitting at the kitchen table, but then laughed when she realized it wasn’t real.
Patients interested in recording their own Parkinson’s story are asked to fill out a form on the website and explain their disease experience in 250 words or less.
The campaign will also go on the road in early 2022 with StoryCorps’ MobileBooth, an Airstream trailer turned recording studio that traverses the country collecting stories.
“We would have liked to launch that component during the campaign, but with the ongoing pandemic, we pushed it into 2022,” Fagan said. She said the first stops will be in Florida and Georgia.
The campaign is Acadia’s latest in a string of awareness efforts to combat what CEO Steve Davis has described as the “information gap” for PDP, which he said is often underdiagnosed and misunderstood by both patients and doctors.
Although Nuplazid was once hailed as a potential blockbuster, it brought in just $441.8 million last year and has faced numerous challenges since its launch, including scrutiny over its safety and a surprising label-expansion setback earlier this year.