Imagining a Better Future for Hidradenitis Suppurativa

Hidradenitis suppurativa (HS) has long been misunderstood, underdiagnosed, and undertreated. However, at a recent panel discussion led by Vivian Shi, MD, at UCB’s HS Summit, the message was clear: change is here and it is accelerating.

The panel, which included UCB Senior Vice President and Head of US Immunology Camille Lee, Vice President and Head of US Dermatology Rhonda Peebles, and Vice President and Head of Medical Immunology Jeffrey Stark, MD, reflected on progress in HS care and speculated about a future in which the disease no longer dominates the lives of those who suffer from it.

FROM SILENCE TO CENTER STAGE

Lee opened by reflecting on how much the conversation around HS has evolved over just the past few years.

“When I joined UCB 6 years ago,” she said, “HS wasn’t really talked about. It was barely a blip.”

Now, HS is taking center stage at major scientific meetings. More clinicians are learning to recognize its signs, and more patients are speaking out. HS is being seen for what it truly is: a complex, chronic inflammatory disease. It is not just a skin condition, not a hygiene issue, and certainly not something patients should suffer through in silence.

Lee emphasized the growing strength of advocacy groups, noting that patients using their voices to correct misinformation and raise awareness has been critical to changing the narrative. "There is more to it than just the acronym ‘HS,’” she said. “Now, people know what’s behind it, what it really means to live with it."

PARTNERSHIP FOR PROGRESS

Dr. Shi, a dermatologist at the University of Washington, explained that advancing HS care requires a multifaceted, collaborative effort. She described her own approach to care as one centered on humility and listening.

“Patients are the real experts,” she said. “They live in their skin every day. I am just here to learn and build a toolbox with them.”

Dr. Stark echoed this sentiment.

“Partnership is the name of the game,” he said. “Everyone—patients, providers, advocates, and industry—brings something unique and valuable to the table.”

Dr. Stark emphasized that real change happens when all stakeholders are aligned around shared goals, such as faster diagnosis, more effective treatments, and greater awareness.

WHAT THE SCIENCE TELLS US AND WHERE IT IS TAKING US

Scientific discovery is fueling a renaissance in HS. According to Dr. Stark, advances in understanding the immunological mechanisms behind HS are now translating into more precise treatments.

“The more we understand about the specific immune pathways involved,” he said, “the more targeted and effective our therapies can become.”

Dr. Stark also pointed to innovations in real-world data, imaging, and outcome measures that are allowing researchers to look beneath the surface both literally and figuratively to improve care.

The panelists agreed that these advances need to be translated into earlier diagnosis and holistic care models, such as multidisciplinary centers of excellence, so that patients can get the right treatment at the right time.

ADDRESSING INEQUITIES AND REACHING THE UNREACHED

Awareness alone is not enough, the panelists said. Access and equity remain significant challenges.

Lee noted that HS disproportionately affects women and African Americans, and she emphasized the need for better research and treatment strategies tailored to those populations. “We cannot assume what is true for one group is true for everyone,” she said. “We need science that reflects the full diversity of the people we serve.”

Peebles added that rural patients face particular barriers.

“Many of them end up in the OR or urgent care repeatedly, without access to a dermatologist,” she said. “We need to bring education and treatment to them—not the other way around.”

WHAT THE NEXT 5 YEARS COULD BRING

As the session closed, panelists were asked to imagine a world 5 years from now: what would success look like?

Lee said she hopes that patients can live full lives, with HS becoming a background detail—not the main story. Peebles envisioned a wider range of treatment options and a world where conversations between patient and clinician begin with mutual knowledge and trust. Dr. Stark spoke about a world where patients are diagnosed quickly and accurately, without being dismissed or misinformed.

Dr. Shi concluded by imagining a time when her patients no longer come in talking about their pain or abscesses but instead proudly share stories such as, “I wore what I wanted this weekend,” or “I went biking with my family and felt free.”

LET’S GO PRO

Dr. Shi left the audience with a rallying cry: “Let’s go pro.” That, she said, means approaching HS not just as a clinical challenge but as a cause. It means committing to shared goals, listening to patients, prioritizing health equity, and never settling for “good enough.”

HS is not an easy disease, but with collaboration, innovation, and compassion, the future is bright.