As the hidradenitis suppurativa (HS) community kicks off HS Awareness Week, it’s an opportune moment to reflect on the progress we’ve made and the road ahead in understanding and managing HS. This week is dedicated to raising awareness about this often misunderstood and misdiagnosed skin disease and highlighting the vital work being done alongside patient communities.

I recently sat down with my colleague and friend Brittany Blair, Head of Patient Strategy & Solutions, U.S. Immunology, to delve into the critical role of patient involvement in shaping healthcare solutions. Brittany sheds light on UCB’s efforts to integrate patient perspectives into its direct-to-consumer (DTC) strategies, patient support programs, and community-focused initiatives. Alongside her, Cara, living with HS and a valued member of the advocacy community, shares her personal experience and insights.

Brittany, why is integrating the patient perspective crucial to UCB’s marketing efforts, and how does it shape the company’s approach to raising awareness and developing resources for HS?
Showcasing real patients in an authentic way is essential to everything we do. At UCB, we believe that understanding patients’ lived experiences is crucial for creating meaningful and impactful healthcare solutions. By actively listening to and co-creating with those living with HS, we tailor our resources and campaigns to address real needs and concerns. This collaborative approach not only makes our messaging informative and personally resonant but also fosters a supportive and well-informed community. By showcasing real patients in an authentic way, we amplify genuine voices and experiences, further enriching our efforts to connect and support the HS community.

Cara, you worked behind the scenes with UCB on our HS commercial. What was that experience like? Were there any elements that you remember advising on to make sure the true patient experience was reflected?
Working behind the scenes with UCB on this initiative was a privilege and a memorable experience. UCB brought me on as a consultant to bridge the gap between the producers and real HS patients. This allowed the creative team to do what they do best while ensuring that the physical and emotional needs of HS patients were coming through in an authentic way. One standout moment for me was when the idea of a character riding a bike came up. While it might seem simple, riding a bike can be very painful for someone with HS. We worked together to find an alternative that better reflected the reality of living with HS. UCB’s decision to include real HS patients and have two consultants on board, including myself, is a real testament to their dedication to the community.

Brittany, what has been the most eye-opening lesson you’ve learned from engaging with HS patients, and how has it influenced UCB’s strategies?
One of the most profound lessons we’ve learned is that HS affects each person differently, so there is no one-size-fits-all approach to care or communication. Many people face years of delays in diagnosis, with the average time to diagnosis of 7-10 years.1 We’ve also learned about the psychological toll, and the importance of taking a holistic approach inclusive of mental health, social well-being, exercise, diet, etc.2-3 Additionally, there are people living with HS who are deeply engaged and knowledgeable about their condition, often building strong social media followings that enable them to serve as powerful advocates and partners in driving education and engagement efforts. Finally, we’ve witnessed firsthand the huge importance and need for community and connection among people living with HS. It’s a strong, remarkable community! For some patients who attended UCB’s inaugural HS Summit in 2024, it was the first time they met someone else living with HS. That support system is so important to share experiences. These insights have led us to adopt a more personalized strategy, ensuring our resources can adapt to different needs of the HS community.

Cara, while many people think of the physical symptoms of HS, there is also a huge emotional burden. How important is mental health and holistic care in HS, and what resources have you found helpful?
I always say that my therapist helped me more than my dermatologist because I needed emotional support before I could advocate for myself medically. It wasn’t until I started working on my mental health that I had the capacity and confidence to seek proper treatment.

That’s why I teamed up with Dr. Katelyn Baker and HSConnect.org to create Healing Space—a free resource offering mental health support through blogs, podcasts, and videos tailored for HS patients. We cover topics ranging from body image to shame to eating disorders, and we address the tough questions people often hesitate to ask elsewhere. Beyond providing these resources, we aim to remind those with HS that the condition is not their fault, and they are not alone!

Brittany, could you share some of the key initiatives UCB is employing to enhance awareness and understanding of HS and its treatment options?
UCB is boosting HS awareness through educational campaigns and collaborations with patient advocacy and third-party organizations. We’re investing in digital platforms that provide easy access to reliable information and resources. One example is the Healing Space initiative Cara mentioned, which UCB sponsored, given the critical need to focus on HS mental health and well-being. We also created the Make HStory disease state education campaign, in partnership with individuals living with HS and healthcare providers. The campaign was designed together with our Medical Affairs team, with the intent to educate and support both patients and providers.  

UCB also proudly sponsors the HS Papaya app, developed by two leading HS physicians. This app helps people living with HS track their symptoms, communicate with their provider, connect with an HS center of excellence, and more. Our goal is to empower patients with knowledge and tools they need to manage their condition effectively and to encourage open conversations with their doctors about treatment options that can offer relief and help them reclaim their lives.

We're also committed to advancing research by partnering with leading healthcare professionals. One major initiative is our support for an HS patient registry in partnership with the University of California, San Francisco (UCSF). This registry will help investigators, clinicians, patients, and industry work together to improve the lives of people living with HS. UCB continues to build meaningful partnerships through HCP and patient campaigns, such as our collaboration with the HS Coalition, which aims to address health inequities and transform policy and access for people living with HS.

Cara, why did you become an HS advocate?
I actually didn’t set out to become an advocate. Four years ago, I felt completely alone with my HS. I was ashamed, embarrassed, and certain that no one else understood. So, I started an anonymous Instagram account and shared that I was training for a Tough Mudder, even though HS made it extra challenging. I just wanted to know if anyone else could relate. That one post connected me with others and ignited my passion for advocacy. This community saved me, and I hope I can do the same for someone else.

Brittany, where do gaps in HS care still exist, and what steps is UCB taking to address these challenges? What can we all do collectively to improve the situation?
There are still significant gaps in HS care, especially in early diagnosis and access to specialized care. UCB is tackling these challenges by working with healthcare providers to improve diagnostic tools and training, and by advocating for broader access to treatment options. Together, we can help by raising awareness, dispelling myths, and supporting people with HS in getting timely and appropriate care. Public awareness initiatives, like HS Awareness Week, are vital to this effort.

At UCB, our goal is to provide value and support beyond our medicines. We recognize that we can drive meaningful change for those affected by HS by collaborating, amplifying voices, and sharing knowledge. The more we can shed light on this complex disease, the more we can help those living with HS, both those who have received a diagnosis and those who are not yet diagnosed.  
 

References

1. 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.
2. Shukla N, Paul M, Halley M, et al. Identifying barriers to care and research in hidradenitis suppurativa: findings from a patient engagement event. Br J Dermatol. 2020;182(6):1490-1492.doi:10.1111/bjd.18818. 
3. Vinkel C, et al. Hidradenitis Suppurativa: Causes, Features, and Current Treatments. J Clin Aesthet Dermatol. 2018 Oct;11(10):17-23. Epub 2018 Oct 1. PMID: 30519375; PMCID: PMC6239161.