This past summer, UCB welcomed members of the hidradenitis suppurativa (HS) community – dozens of people living with HS, caregivers, advocacy groups, and medical experts – onto our Atlanta campus for our HS Summit to advance understanding of the treatment journey and unmet needs of those impacted by this disease. 

Despite current treatments, unmet needs are high within this community, including a long journey to diagnosis for many.^1-2 It was incredibly powerful to hear patient testimony firsthand throughout the weekend. I was struck by the openness and honesty of members of the community as they shared their physical and emotional struggles and the importance of speaking up. Engaging with the HS community and witnessing their strength and perseverance is one of the most rewarding and inspiring parts of my job at UCB.  

Hearing insights and experiences from the HS community have encouraged our drive to bring a new treatment option to people living with this painful, chronic inflammatory skin condition.³ Today, I’m excited and proud that dermatologists have more options than ever to effectively manage HS. 

Our efforts to support both patients and clinicians are ongoing and go far beyond treatment. One big initiative is supporting a registry of HS patients in partnership with the University of California San Francisco (UCSF), which will facilitate research of this disease through collaboration between investigators, clinicians, patients, and industry to improve the lives of people living with HS. We are also proud to sponsor the HS Papaya app, which was developed by two leading HS physicians to help people living with HS track their symptoms and communicate those to their provider, connect with an HS center of excellence, and more. And at the recent Symposium on Hidradenitis Suppurativa Advances (SHSA) conference, we shared new HS data and met with key third party medical and patient advocacy organizations to advance our collaborative initiatives. These are just a few of the things we’re doing as we aim to establish leadership in HS and dermatology.  

As advocacy leader, Brindley Brooks, co-founder and president of HS Connect, said at the HS Summit, “There’s never a good time to have HS, but there’s never been a better time to have HS.” I am inspired each day as I work alongside those with such a dedication to improving the lives of people impacted by HS. It is a hopeful time. As we forge forward, I know that there will continue to be more treatment options, awareness, and support resources for HS patients – and I am honored to be part of this new era for HS care.

 

References

1. Kokolakis G et al. Delayed diagnosis of hidradenitis suppurativa and its effect on patients and healthcare system. Dermatology. 2020;236(5):421-430.
2. Garg A, Neuren E, Cha D, et al. Evaluating patients’ unmet needs in hidradenitis suppurativa: results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project. J Am Acad Dermatol. 2020;82(2):366-376.
3. Lee, Erika Yue, et al. “What is hidradenitis suppurativa?” Can Fam Physician. vol. 63,2 (2017): 114-120.