Novartis premieres powerful new docuseries at Tribeca Festival to shine a light on debilitating skin disease

• Produced in partnership with advocate, journalist and filmmaker Jasmine IVANNA Espy, "The Beacons: Illuminating HS Stories" offers an intimate look into the journeys of six individuals living with hidradenitis suppurativa (HS)
• HS is a chronic, inflammatory skin disease that can be painful and disabling. It may affect as many as 1 in 100 people worldwide – but awareness remains limited, leading to delayed diagnosis, poor quality of life and unnecessary suffering^1,2,3
• The new docuseries is now available on ShineALightOnHS.com

EAST HANOVER, N.J., June 8, 2023 -- Novartis, a global leader in immuno-dermatology and rheumatology, today announced the launch of a new docuseries, "The Beacons: Illuminating HS Stories," which will premiere during the 2023 Tribeca Festival in New York in recognition of Hidradenitis Suppurativa (HS) Awareness Week.

The docuseries, co-produced with and hosted by HS advocate, journalist and filmmaker Jasmine IVANNA Espy, highlights the experiences of people from multiple countries living with HS. The six-part series follows Jasmine as she talks about her own experiences and has intimate discussions with five other "Beacons" of light for this underserved community – Selina and Jeremy (United States), Marion (France), Kim (United Kingdom) and Latoya (Canada). Each advocate offers a unique glimpse into life with HS, the importance of self-advocacy and the challenges of balancing symptom management with daily activities, relationships, personal passions and work.

"Living with HS and the unpredictable nature of it is a daily battle – both physically and emotionally. When I was first diagnosed, the pain from my flares was unbearable. I felt isolated and ashamed of my body," said Jasmine. "It's my hope that this docuseries can show those who are still looking for answers that they are not alone and that together we can change the way the world looks at HS."

HS is characterized by recurring boil-like lumps that can burst into open wounds, which may result in irreversible scarring. These lumps often develop in the most intimate parts of the body where skin touches skin, such as the armpits, inner thighs, groin area and buttocks.^3,4 This can result in stigma that is considered more prevalent and severe than that of other dermatologic conditions, and its effect often leads to social withdrawal, depression and even unemployment.^4,5,6 HS is three times more prevalent in women than in men,⁷ but it can affect anyone, and can take up to 10 years on average to receive a diagnosis.²

"We are committed to working with the HS community to bring much-needed awareness to a disease that – up until now – has been rarely talked about and to 'Shine a Light' on the impact and raw realities of living with this highly stigmatized disease," said Gail Horwood, Chief Marketing and Customer Experience Officer, Novartis Innovative Medicines US. "Featuring the powerful, real stories of six Beacons in the community, we launched this docuseries during HS Awareness Week to elevate the voices of those living with HS so that others feel supported and empowered to get the diagnosis and care they need."

The new docuseries is part of the "Shine a Light on HS" campaign, which was developed by Novartis to help educate and provide helpful tools to people who are undiagnosed but suffering from the symptoms of HS. To watch the docuseries and learn more about HS, US audiences can visit ShineALightOnHS.com.

About hidradenitis suppurativa (HS)
HS is a chronic, systemic, progressive and often painful inflammatory skin disease.^1,3 It causes recurring boil-like abscesses that can burst, creating open wounds, often in the most intimate parts of the body, which may result in irreversible scarring.^3,4 It can take up to 10 years on average to get a correct diagnosis, even though HS may affect approximately 1 in 100 people globally.^2,3 In advanced cases, healthcare professionals often consider surgery to remove abscesses.⁴ HS impacts patients' quality of life more than any other skin disease, and people living with HS often experience comorbidities such as obesity, diabetes, arthritis and depression.^4,5,8

Disclaimer
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About Novartis
Novartis is reimagining medicine to improve and extend people's lives. We deliver high-value medicines that alleviate society's greatest disease burdens through technology leadership in R&D and novel access approaches. In our quest to find new medicines, we consistently rank among the world's top companies investing in research and development. Novartis employs about 14,000 people in the United States. For more information, please visit https://www.novartis.us

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References

1. Garg A, Naik HB, Alavi A, et al. Real-World Findings on the Characteristcs and Treatment Exposures of Patients with Hidradenitis Suppurativa from US Claims Data. Dermatol Ther (Heidelb). 2023 Feb;13(2):581-594. doi: 10.1007/s13555-022-00872-1.
2. Kokolakis G, Wolk K, Schneider-Burrus S, et al. Delayed Diagnosis of Hidradenitis Suppurativa and Its Effect on Patients and Healthcare System. Dermatology. 2020;236(5):421-430. doi: 10.1159/000508787
3. MedLine Plus. Hidradenitis Suppurativa [online]. Available at: https://medlineplus.gov/genetics/condition/hidradenitis-suppurativa/ [L… 2023].
4. Sabat R, Jemec GBE, Matusiak L, et al. Hidradenitis Suppurativa. Nat Rev Dis Primers. 2020;6 18. doi: 10.1038/s41572-020-0149-1.
5. Mac Mahon J, Kirthi S, Byrne N, et al. An Update on Health-Related Quality of Life and Patient-Reported Outcomes in Hidradenitis Suppurativa. Patient Relat Outcome Meas. 2020;11:21-26. doi: 10.2147/PROM.S174299.
6. Koumaki D, Efthymiou O, Bozi E, et al. Perspectives on Perceived Stigma And Self-Stigma In Patients With Hidradenitis Suppurativa. Clin Cosmet Investig Dermatol. 2019;12:785–790. doi: 10.2147/CCID.S180036.
7. Cartron A, Driscoll MS. Comorbidities of Hidradenitis Suppurativa: A Review of the Literature. International Journal of Women's Dermatology. 2019 Jul;5(5):330-334. doi: 10.1016/j.ijwd.2019.06.026.
8. Montero-Vílchez T, Sánchez-Díaz M, Martínez-López A, et al. Quality of Life in Patients with Skin Disease and Their Cohabitants. In: Jasneth M, Sage A, Medhane C, Eds. Health-Related Quality of Life. Rijeka: IntechOpen; 2021: Ch. 5.

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