At UCB, patients are at the heart of everything we do, and our enduring commitment to people impacted by severe diseases drives our scientific discovery. We often turn to the community to understand the impact of these diseases, engaging patients and their caregivers and a range of providers to inform our efforts to deliver impactful solutions that will help people living with severe diseases.

One area where we’re deepening our understanding is hidradenitis suppurativa (HS), a chronic, recurring, painful, and debilitating inflammatory skin disease.^1,2 Currently, there is no cure for HS and patients face significant unmet treatment needs. The main symptoms of HS are nodules, abscesses, and pus-discharging fistulas (channels leading out of the skin) which typically occur in the armpits, groin and buttocks.1,2 People with HS experience flare-ups of the disease as well as severe pain, which can have a major impact on quality of life.^1,2 

HS was once thought to be a rare disease, but as our Head of U.S. Advocacy Matt Harutunian put it, “HS is not rare, but it is rarely talked about.” Matt and the team at UCB are ready to change that.

We know too, that people living with HS are seeking more resources and education on the condition. This is increasingly clear as we learn more from our ongoing work with the HS community. As part of our continuous learning, I recently asked leaders from across our Dermatology team to share what they have learned from the HS community and how they apply those insights to their work each day. These conversations have been edited and condensed for clarity.

Tiffany Crawford, Head of Dermatology Marketing: I have learned that HS is an affliction where people suffer in silence due to the pain, and also from the shame and blame that providers and society have placed upon them. My goal is to give these patients back the moments that matter. I ensure this through my relentless efforts to make sure people impacted by HS have access to education on the disease and are empowered to push for the appropriate care.

Natasha Trujillo, Ecosystem Portfolio Strategy Lead: Understanding the journey individuals with HS experience through their eyes has been a lesson in both humility and inspiration. We have learned from firsthand accounts how this condition can affect someone’s mental health, ability to work and social relationships in a way that is very isolating. We are committed to bring this awareness and prioritization of the whole HS patient journey to large Health Systems so that they are more informed to help this community better.

Brittany Blair, Head of Patient Strategy & Solutions: Patients with HS are determined and tireless in their search for solutions. The community they have built is growing stronger, and UCB can amplify their voices and be a catalyst for change when it comes to addressing HS. It’s my goal that through connection and partnership with patients, we can become part of their community and offer life-changing solutions and support. 

Tae Oh, Medical Affairs Lead for Dermatology: People with HS are warriors that fight every day and often time go unrecognized. I want to help in any way I can within this HS journey and become the fighting companion and partner they so deserve. I’m excited to galvanize our organization to make history by bringing more attention and awareness to hidradenitis suppurativa within the medical community.

Bob Rolleri, Clinical Program Director in HS: The one thing I have learned from the HS community that I bring to my every day is that they are fellow human beings that want the same things we all do in life - physical and emotional well-being, family and relationships, enjoying life. This horrendous disease makes this hard for them. My every day is working with the great people of UCB and the external medical community that cares about HS patients to find solutions to give them hope for bringing balance back to their lives.

As UCB works to amplify the voices of HS patients and be a catalyst for change, we mirror the HS community’s determined search for solutions. It is our hope that by closing the education gap around HS, we can elevate knowledge about this chronic and painful condition, leading to additional care options and aiding in earlier diagnosis. Through this work, UCB will continue to help people living with severe chronic diseases, like HS, embrace the moments that matter.  

References

1. Jemec GBE. Clinical practice. Hidradenitis suppurativa. N Engl J Med. 2012;366(2):158-164.

2. Sabat R, Jemec GBE, Matusiak L, et al. Hidradenitis suppurativa. Nat Rev Dis Primers. 2020;6(1);18