Novartis shines a light on rare skin disease at the Tribeca Festival in new docuseries

Some diseases are rare because so few people get them, others seem rare even if they’re not because people don’t want to talk about them. Such is the case of hidradenitis suppurativa (HS)—a chronic, progressive dermatological disease, which, despite affecting one out of a hundred people worldwide, is not very well known.

Novartis has partnered with filmmaker, journalist and advocate Jasmine Ivanna Espy to create a docuseries, “The Beacons: Illuminating HS Stories,” profiling six people, including herself, who suffer from the devastating effects of this condition.

Premiering June 8 at the Tribeca Festival, the six episodes delve into the backstories of the subjects as they’ve dealt with HS, which presents as bumps, boils and sores (abscesses) in areas where skin meets skin. The outbreaks can rupture, leaking blood and pus which may be odorous. It can also lead to extensive scarring.

“We've started to understand in a lot more nuanced way what patients are feeling and the almost 10 year on average treatment diagnosis odyssey that they're on,” Gail Horwood, Novartis’ chief marketing and customer experience officer, said in an interview with Fierce Pharma Marketing.

“They feel isolated alone, stigmatized—you name it—and they almost feel like they're being judged. What we wanted to do was use the best storytelling tools and their own voices to really humanize this condition and hopefully help people find their way to the right treatment.”

The docuseries is part of Novartis’ larger “Shine a Light on HS” campaign, which includes the website where people can get information and tools to deal with the disease or even to help start the process of diagnosis. One of the tools available for both patients and HCPs is a skin visualizer as the disease presents differently on different skin tones.

Each episode is about four minutes long, and, after an introduction to the subject, Espy sits down and talks to them about their experience. In LaToya’s piece, we learn that HS disproportionally affects women and especially women of color. LaToya and Espy discuss the additional pressure the disease puts on Black women, who already have plenty of hurdles to overcome. Like many of the other subjects in the series, LaToya is a patient advocate. In the piece she emphasizes that “Being an advocate is how I heal.”

The videos are available on the website and YouTube, and the series will also be promoted through the Tribeca Festival.

“We know and we've heard through our insight work that patients and potential patients like to hear from others like them," added Horwood. "That's why we wanted to create a wide platform to share these stories.

"But at the end of the day, if we can find more people who are suffering and don't know that there's actually something that can help them, that's what we're trying to do. So it's that unmet need. We say shine a light because they're in the dark. They either literally or physically in the dark; they don't want to expose themselves.”

Novartis’ Cosentyx, a mAb already approved in psoriasis and other inflammatory conditions, just last week nabbed a full European approval in HS. The FDA, meanwhile, is expected to decide on the drug's HS license in the second half of the year. If so, Cosentyx would become only the second FDA-approved HS treatment after AbbVie’s Humira nabbed approval eight years ago.

Novartis released 52-week data for Cosentyx in HS. The drug’s response rate—as measured by inflammatory lesion and skin abscesses on a marker called HiSCR—reached 55% after one year. Results showed about half of those using Cosentyx had a significant reduction in HS-related pain.

More competition is on the horizon with UCB’s IL-17A/F inhibitor Bimzelx, which showed better results, according to experts interviewed by SVB Securities analysts.