Biogen’s late-stage lupus candidates may not have crossed the FDA finish line yet, but the company has already hit the ground running with its patient advocacy work.
A new social media tie-up featuring lupus patient advocate Naomi Rose highlights her journey navigating the chronic autoimmune disease cutaneous lupus erythematosus (CLE), emphasizing the importance of connecting with community in the disease space.
“Lupus has taught me resilience,” she says in the 54-second video. “Some days I have hope and some days it is hard to have hope.”
The video continues with clips of Rose living her day-to-day life; working out, setting up her camera to film and spending time with her son. As she discusses the power of social media content and building community, a montage of video content from her own social media plays, flashing through a barrage of meaningful moments that she’s posted online.
“These are real people, with real experiences that can actually relate,” Rose says, referring to the community of lupus patients she’s found by sharing her experience on social media. “And it just makes me happy to connect and find community within that. That is what keeps me going.”
The video ends with Biogen’s “making breakthroughs happen” tagline, but this time with “in lupus” added in a different font.
“Behind every lupus diagnosis is a person, a story, and a community,” Biogen wrote in its Facebook caption for the video. On Instagram, the company uses a different caption introducing Rose’s journey of “resilience, hope, and finding strength through community," further inviting its audience to “hear how connection and shared understanding have shaped her journey.”
Outside of her work as a patient advocate for lupus nonprofit organizations such as 50 Shades of Pain and We Are ILL, Rose works in influencer marketing herself as a brand partnerships coordinator for an Atlanta-based creator, according to her LinkedIn. She has also amassed a large following on her own social media pages, where she posts motherhood and travel content on her personal page, plus lupus advocacy content on her lupus-specific page, Lupus Living Diaries.
Biogen has enlisted several patient advocates so far in the lupus space, who have shared their stories as the company continues to study its two lupus candidates. The drugmaker is working on what it says could be the “first lupus portfolio in the industry” and developing treatments for both systemic lupus erythematosus (SLE) and CLE.
Earlier this year, Biogen’s litifilimab earned a breakthrough therapy designation in CLE from the FDA, adding more weight to what the company hopes to be the first advanced therapy specifically approved to treat the disease subtype. Litifilimab is currently in phase 3 trials for CLE and SLE, with a data readout in CLE expected in 2027. In SLE, Biogen’s litifilimab studies were specifically designed to enroll participants that accurately reflect the U.S. lupus patient population, as the disease disproportionately impacts young women, especially in communities of color.
Biogen often spotlights patient advocates on its social media, with recent posts including a celebration of spinal muscular atrophy (SMA) awareness month and a series of patient and caregivers sharing their Alzheimer’s disease stories. Earlier this summer, the company launched a campaign highlighting the “patient journey of individuals who have grown up with SMA,” using images shot from a lower angle to redefine how people view those who use assistive devices, Biogen told Fierce at the time.