Alnylam Pharmaceuticals has put its dancing shoes on to raise awareness of the experience of living with acute hepatic porphyria (AHP).
A recently released patient storytelling initiative by the pharma puts the spotlight on Hannah, a woman with AHP, who choreographed a dance to express her journey to being diagnosed with the rare disease.
AHP, a genetic disease that starts in the liver, primarily affects women, with an estimated 80% of diagnoses affecting women between the ages of 15 and 45. Though some people with AHP may not experience symptoms, per the Cleveland Clinic, it can lead to a buildup of toxic compounds in the liver that then spread into the bloodstream and reach the nerves, causing pain or weakness throughout the body plus gastrointestinal symptoms, neurological conditions like anxiety and depression, and more.
Alnylam recruited Hannah to create the dance in an effort to “bring to life patient stories with the concept in mind that, first and foremost, patients are people,” according to Mara Molinello, head of the company’s rare disease business.
“They have passion, they have stories, they have talent, and, often, they’ve been through journeys of incredible resilience and strength,” Molinello said in an interview with Fierce Pharma Marketing. “So, when we heard that Hannah, who is one of our patient ambassadors, actually was a dancer, we thought it would be very impactful and very meaningful to tell her story through dance, which is such a personal art form to her.”
The four-minute dance features movements that both literally and metaphorically portray Hannah’s physical symptoms and her emotional reactions upon receiving the diagnosis—in a way that is understandable and relatable to any viewer, per Molinello.
“It doesn’t matter if you know about AHP or not—you can visibly understand the emotions, the journey she’s been through, and I think there is a lot of power [in dance] that often words cannot really explain,” the exec said.
In a voiceover throughout the video of her dance, Hannah talks about her passion for the art form and how it was affected by her AHP.
“My story will always start and end with my body as art," she says. "The variety of movement in dance is a source of strength and expression for me—it allows me to be in constant conversation with my body and trust it to create art and something invaluable. However, my journey with acute hepatic porphyria, or AHP, changed that conversation with and trust in my body.”
Though the dance expresses many moments of pain and confusion, it ends on a hopeful note, with Hannah floating her arms like wings through the air and turning back to the audience with a smile.
“I’m not a victim of AHP. While my pain is real, so is my strength to overcome it through hope and perseverance,” she says as the video ends.
The initiative, which Alnylam produced in partnership with Hearst’s StoryStudio, features additional videos of Hannah talking about her AHP and the process of choreographing her dance. The site also offers statistics and symptoms about the disease plus information about Alnylam’s Givlaari, which was approved by the FDA in 2019 to treat AHP and which Hannah credits with helping manage her symptoms.
Molinello said that while Alnylam will be monitoring traditional digital metrics tied to the campaign, “even more important and even more a sign of success” is how the AHP community reacts to it. So far, that response has been “very positive," she said.
“They’ve been very enthusiastic about this campaign, and they’ve helped us actually further share the message that Hannah wanted to put out there,” Molinello said.
Moving forward, Molinello said Alnylam will continue to experiment with different art forms and technologies to share patient stories of living with rare disease. On the creative front, that effort has previously included a collection of artwork illustrating day-to-day life with AHP and could soon see patient experiences expressed through music, she hinted. Technology-wise, Alnylam is dabbling in artificial intelligence and in newer social media platforms like TikTok and YouTube Shorts.
“We’re going to continue to try to leverage a combination of technology without compromising the authenticity of the person and the talent and the stories that these patients bring to life,” she said, adding, “When you’re working in rare disease with these patient communities, if you don’t put the patient at the center, your message is never going to be impactful.”