Lights, camera, Alexion! Fresh off earning FDA approval for its drug Ultomiris to treat certain adults with neuromyelitis optica spectrum disorder (NMOSD), AstraZeneca’s rare disease unit has put out a short film sharing several NMOSD patients’ stories—and emphasizing the overlaps between them.
The 10-minute film, dubbed “Rare Connections in NMOSD,” features Craig, Alex and Marie, each of whom were tasked with writing a letter describing their experiences with the disease, including resulting cases of blindness and paralysis, and the months and years it took to be correctly diagnosed.
The inflammatory neurological disease targets the central nervous system, and its unpredictable attacks and relapses can cause permanent disabilities. Though a recent study estimated that around 22,000 people in the U.S. are living with NMOSD—with Black and Asian American women disproportionately affected—Alexion places the number of people actually diagnosed with the disease much lower, at around 6,000, since it can be difficult to diagnose and is often confused for multiple sclerosis or other conditions.
In an interview with Fierce Pharma Marketing, Wendy Erler, Alexion’s head of patient experience and insights, and Tamar Thompson, head of corporate affairs, said the company chose a short film as the medium for this awareness-raising effort to allow the patients to dig into each other’s stories and their shared experiences.
“It really is a very emotional and physical condition, and the attacks come out of nowhere, so there’s little expectation or planning or really understanding what this healthcare journey is going to be … and it’s just a really confusing, very scary time,” Erler said. “So the short film format enables us to share that in a really compassionate way that doesn’t over-amplify that drama but really helps share this experience. And when you see how these three incredible people engage with each other—to me, it was a great format to show how important that connection is.”
In the film, each of the trio are assigned to read one of their fellow patients’ letters, then reflect on that experience, after which they’re shown getting to meet and embrace one another.
“Her letter, to me, was almost a ‘ditto’ of yours,” Alex’s caregiver says through tears after reading Marie’s letter aloud. Alex adds that it’s thanks to her support system that “I am strong, I am independent, I am who I am because you guys never gave up—you never gave up on me.”
“Hearing their stories and being able to share my own has, for me, released over 20 years of pent-up frustration and emotional pain,” Craig says after reading Alex’s letter. “It was humbling, right? I don’t think I realized how much I needed the community and just that relational aspect until I was exposed to it. That is a very freeing and gratifying experience.”
“Just having that connection, it’s just so powerful,” Marie adds, saying of Craig’s letter, “Hearing his story and what he went through, I’m like, ‘Oh my gosh, that’s what I went through.’ That gives me hope for one day, that maybe I might have a family.”
Alexion’s Thompson said in the interview that while other disease awareness campaign videos that focus on patients’ individual experiences are certainly important in their own right, the “beauty” of this short film lies in how it was able to help NMOSD patients realize that they’re not alone, and that “community matters.”
“We had three very unique patients—three different walks of life, three different communities, from various states—yet their journey led them all to a very common place,” she said.
The short film premiered with a special screening for an audience of patients, advocacy groups and healthcare providers in New York in March in honor of NMOSD Awareness Month. It went live on YouTube last week and made its conference debut this week during the annual meeting of the American Academy of Neurology, where Alexion was hoping to show neurologist attendees a side of the NMOSD patient experience they may not usually get to see, Thompson said.
Alexion is also planning to share the video via other digital and social media outlets and at additional conferences throughout the year, she said, adding, “We want to make sure that we continue this journey, amplifying this message on social media outlets and continuing to leverage the patient community as voices and megaphones for messaging.”
The film’s goals are manifold. Alexion is aiming to strengthen the community of NMOSD patients and raise awareness about the disease, plus, as Erler noted, the film had the added benefit of “giving voice to people that have previously felt voiceless.”
“Each of these three patients shared that they hadn’t really shared their story and hadn’t really connected to the community, and when they did, how empowering and life-changing that was. And I think when you hear their individual stories, it is about how do we raise the importance of coming together as a community,” she said. “But also, NMOSD is so frequently misdiagnosed, and what comes with that in this rare disease is also mistreatment. If the condition is misdiagnosed and treated as if it’s something else, that’s very damaging, so raising awareness is equally as critical.”
The campaign ties into Alexion’s many years’ worth of work not only to develop treatments for NMOSD and other rare diseases but also to “deeply and meaningfully” engage with patients to better understand their gaps in care and unmet needs, Erler said.
Launching the video is part of an effort to “make sure that we are squarely focused on the needs of this community and the disparities in the rare disease space,” Thompson said. “We want to make sure that we amplify the fact that NMOSD is one of 10,000 rare diseases where patients are not alone—there are 400 million people across the globe that have a rare disease—and we wanted to make sure we started there, having that conversation with this community.”
And it may be just the beginning: When asked whether Alexion plans to continue using the short film format to explore other patient experiences beyond NMOSD, Thompson said, “We certainly hope so. We certainly hope that this is an opportunity for us to be on a journey with the patient community that we serve and to amplify the voices of the rare disease community at large.”