Ten years. That’s how long it can take for people living with hidradenitis suppurativa (HS) to be diagnosed.1
Shea, 39, a mother of 3 living with HS in Bowling Green, Kentucky, knows that reality firsthand. She was 19 when she began experiencing painful, boil-like bumps (or abscesses) in her groin. The pain prompted her to seek medical care for answers. Instead, she was misdiagnosed with a sexually transmitted disease (STD) with no actual testing involved. Sharing this false diagnosis with others made her feel ashamed, given the social stigma associated with STDs, all while her treatment plan worsened her physical pain.
“It didn’t look the same to me,” she recalled, describing how her symptoms didn’t seem to match the diagnosis she’d been given. “How do you tell someone who is a medical doctor that they’re wrong. Being told I had an STD was embarrassing, yet I didn’t feel like I could question it.”
HS is an immune-mediated disease that can cause painful, recurring bumps or boil-like lesions and permanent scarring.2,3 Yet it is frequently misunderstood or misidentified, with patients waiting years for an accurate diagnosis.1 During that time, the disease, driven by chronic inflammation, can continue to progress, severely impacting quality of life.1,3
Without a clear answer, the pain persisted and the disease progressed, causing her to become deeply isolated. For years, Shea continued to carry the stigma while her symptoms and pain worsened, and the boils continued to grow and spread to other parts of her body. Even everyday activities like sitting, walking or wearing certain clothing became difficult.
The turning point finally came in her late twenties when her OB/GYN correctly diagnosed her with HS. By that point, she required surgery, hospitalization, and other intensive interventions to remove deep, damaged tissue tunnels and save the surrounding healthy skin after years of recurring flares and infections.
Unfortunately, Shea’s experience is not uncommon. For people living with HS, the greatest challenge is often not accessing treatment, but rather having the disease recognized in time.1
READ: How Katy, a Patient Turned Advocate, Found Her Purpose
“For too many people living with HS, the path to diagnosis is long, frustrating and often filled with missed signals. When HS is not recognized early, patients can continue to experience worsening symptoms and lasting impact,” says Murad Alam, MD, MSCI, MBA, FAAD, President of the American Academy of Dermatology (AAD).
Recognizing the need to change that trajectory, Novartis has launched a multi-year collaboration with the AAD that leverages anonymized patient data from a nationwide registry. The collaboration combines the power of artificial intelligence (AI)-driven advanced analytics and clinician education to achieve a single goal: helping HS be identified earlier and managed more effectively across the healthcare system.
A Partnership Built to Close Real-World Gaps in HS Diagnosis
As part of our ongoing commitment to innovation in immunology, Novartis partnered with the AAD on a collaboration connecting DataDerm™—the AAD's clinical data registry—with data analytics partner OM1's AI-enabled Patient Finder™ tool. The resulting findings enable a deeper understanding of the real-world HS patient journey, based on tens of millions of de-identified patient encounters.
HS can hide in plain sight, with patients often cycling through multiple care settings before the condition is identified. Helping clinicians recognize these patterns earlier may create opportunities for timelier referral and intervention.
Launched in October 2024, the partnership is moving from data collection to real-world action. After first utilizing AI to pinpoint where the healthcare system often misses the initial signs of HS, Novartis and AAD are translating these insights into practical tools for physicians. These resources are intended to:
- Increase clinician competence and confidence in identifying and diagnosing HS
- Reduce underdiagnosis and time to diagnosis
- Improve the quality of care of patients with HS in clinical practice
What Real-World Data is Revealing About Missed Moments
Early findings from the initiative underscore why HS so often goes unrecognized.
Analysis combining DataDerm data with Patient Finder signals shows that while many people with HS present with “classic” features (e.g., abscesses and recurrent boils), others may first appear with non-classic skin conditions, including severe acne, cellulitis, or dermatitis.4
Beyond the skin, the data also highlights patterns that may not immediately point to HS, such as:4
- Frequent treatment for chronic pain and inflammation
- Higher rates of upper respiratory infections
- Increased interaction with nondermatological specialties, including gynecology—with some patients undergoing frequent STD testing given symptoms in intimate areas
- Co-occurring anxiety and depression, which may signal unrecognized disease burden
Taken together, these insights reinforce a critical reality: HS can hide in plain sight, with patients often cycling through multiple care settings before the condition is identified. Helping clinicians recognize these patterns earlier may create opportunities for timelier referral and intervention.
READ: New Survey Reveals 4 Things Patients with HS Really Need
How Novartis and the AAD Are Turning AI Insights into HS Education
In the second phase of the program, findings from the Patient Finder™ analyses are being disseminated through a broad range of evidence based educational resources, including on-demand courses, podcasts, and webinars—some accessible by AAD members only, and others available to the broader public.
The AAD is also leveraging these insights to update their HS clinical guidelines, which will further support dermatologists and other clinicians in recognizing HS sooner and understanding appropriate management approaches.
“By using real-world data to better understand where HS may be overlooked, we can create practical education and quality improvement resources that help clinicians identify the disease sooner and connect patients to more timely care.”
The initiative’s next phase will focus on quality improvement, engaging dermatology practices in pilot programs and peer-to-peer sessions to help ensure these tools are applied in real clinical workflows. By pairing education with structured quality improvement methods, the collaboration aims to move beyond awareness toward measurable, practice-level change.
Shaping the Future of Care for People with HS
HS is a condition where earlier diagnosis and intervention matter—particularly because patient benefit from available therapies may be limited once the disease has progressed to more severe stages.1
“At Novartis, we have helped usher in a new wave of therapeutic innovation for people living with HS,” says Christy Siegel, SVP and Therapeutic Area Head, Immunology. “While we are making important progress, it is clear that improving outcomes—in HS and many other immune-mediated diseases—requires more than innovation in isolation.”
This collaboration with the AAD is yet another example of the importance of working across the healthcare ecosystem, building on a common purpose with the medical community, advocacy, and others, to tackle complex immune-mediated diseases.
Learn more about hidradenitis suppurativa (HS)
