A year after debuting the “Rare Connections” series with a short film about patients’ experiences with neuromyelitis optica spectrum disorder (NMOSD), AstraZeneca’s rare disease unit is turning the cameras on generalized myasthenia gravis (gMG).
Alexion’s “Rare Connections in gMG” film stars three people with the neurological autoimmune disease, for which AstraZeneca markets Ultomiris and Soliris.
Throughout the nearly eight-minute video, the film’s stars are shown writing—and reading aloud—journal entries about their gMG and the support they’ve received from loved ones, before those friends and family members are invited to read the entries themselves.
The film ends with shots of the gMG patients walking in during their loved ones’ filming sessions to surprise them with hugs and share their gratitude in person.
As with the NMOSD-focused film, “Rare Connections in gMG” is aimed at countering the “relatively low” awareness of the rare disease, according to Christophe Hotermans, M.D., Ph.D., Alexion’s head of global medical affairs.
“The reason for this movie is really to highlight the fluctuating and often invisible symptoms of the disease,” Hotermans said in an interview with Fierce Pharma Marketing. “And the goal is really to foster connection with the gMG community and raise awareness about the disease’s physical and emotional impact.”
With that in mind, the target audience for the film is, in a word, “everybody,” he said.
Not only can the film offer solace to gMG patients who feel isolated and misunderstood, he suggested, but it may also help educate their caregivers, loved ones, neighbors and the general public about the reality of life with gMG. That broad swath even includes healthcare providers, as Hotermans said that Alexion has heard from patients who “experience symptoms that are not in textbooks” and so aren’t necessarily being addressed by their doctors.
As for the content of the film, Hotermans said Alexion’s approach was “to share problems that we’ve heard from the patient community and that they really wanted to highlight and that would be representative of what they experience.”
To that end, the film’s stars were largely able to shape their onscreen narratives, he said. Deanna, for example, wanted to shed light on her feelings of being misunderstood by her doctor, especially as her symptoms worsen as the day goes on and so may not seem as severe during morning appointments. Another patient, Nick, took years to understand that his lifelong health issues were due to gMG and so chose to focus on the importance of reaching a diagnosis. Finally, Marta opted to highlight “the unpredictability of the disease,” per the exec.
The film premiered at the Myasthenia Gravis Foundation of America’s international conference in May, where it was “extremely well received” by both patients and caregivers, Hotermans reported.
That represents a key performance indicator for the production, as Hotermans noted that its success will first and foremost be measured by how well it resonates with the gMG community. And, in the longer term, he said, “ultimately, success is really reflected in increased understanding and the meaningful dialogue we spark.”