Brent Hazelett, Chief Executive Officer, HS Foundation
May 2026
Skin disease has historically been under-prioritized relative to its prevalence and its real impact on patients' lives. That has changed meaningfully over the past two decades. For example, therapies for eczema and psoriasis have brought sustained industry investment into a category that was treated, for a long time, as cosmetic rather than systemic. Hidradenitis suppurativa is now among the conditions benefiting from that shift. The pace of change in HS specifically has begun to outrun the standards governing how the disease is diagnosed and treated.
The numbers explain the urgency. HS affects at least one percent of the U.S. population. There are more than forty therapies currently in clinical trials for the disease. Just as significant as the volume is the nature of that pipeline. The first HS treatments relied entirely on biologics repurposed from other indications. Today, drug developers are pursuing molecules designed specifically for HS from the outset. That is the clearest available signal that the field has crossed from peripheral interest into sustained scientific investment.
The clinical landscape governing how that investment reaches patients needs to maintain forward momentum and continue to drive new options.
The most consequential statistic in HS care today is the delay to diagnosis. The current window from a patient's first presentation to a confirmed diagnosis is seven to ten years. That number is both a clinical problem and a system problem. HS is progressive, and outcomes degrade as the disease advances untreated. Patients diagnosed late present with more severe disease, more comorbidities, and a narrower set of treatment options than patients identified early.
The delay is also a leading indicator of variability across the care continuum. Patients with HS rarely begin in a dermatologist's office. They cycle through primary care, OB/GYN, urgent care, and emergency settings, often repeatedly, before the disease is named correctly. Each of those encounters is an opportunity for recognition, and at present, too few of them result in one. The seven-to-ten-year window is, in effect, a measurement of how unevenly the disease is recognized across the specialties most likely to see it first.
HS is definitively managed in dermatology, but it is rarely encountered there first. That distinction matters. Frontline clinicians outside dermatology are often the determining factor in whether a patient is identified, referred appropriately, and started on reasonable initial management, or whether they are sent home with an antibiotic course and a return visit several months later. The same patient, presenting with the same symptoms, can receive materially different care depending on which clinical setting they walk into.
This is the variability that standardized guidance is designed to address. The objective is not to make every clinician an HS specialist. That is neither realistic nor the goal. The objective is to give providers across specialties a shared, defensible reference for what HS looks like, when to refer, and what frontline treatment is appropriate while a patient moves toward specialist care. Recognition and initial management can and should happen outside dermatology. Definitive long-term care belongs with specialists. The current absence of widely adopted standards leaves both ends of that handoff inconsistent.
For payers, the same fragmentation produces a parallel set of issues. Without a clinical anchor, coverage decisions for HS therapies have been made against an evidence base that has shifted considerably in a short period. The downstream costs of delayed and inconsistent treatment, including hospitalizations, surgical interventions, and lost productivity, are absorbed across the system, often by the same payers whose upstream coverage decisions shaped the trajectory of care.
The HS Foundation, working with the Canadian HS Foundation, published the first HS treatment guidelines in 2019. At that point, the FDA-approved therapeutic landscape for HS consisted essentially of one drug, and the guidelines reflected that constraint. They were necessary, but the evidence available to inform them was thin.
The intervening years have produced a different field. Additional therapies have been approved, the trial pipeline has expanded substantially, and in 2023 the American Academy of Dermatology made the decision to fast-track HS in its guidelines development process. That accelerated a workstream that typically operates on a longer cycle. The joint AAD and HSF guidelines now in development reflect both that institutional alignment and a meaningfully larger body of clinical evidence than was available six years ago.
Standardized guidance in this context does two things at once. It gives clinicians across specialties a shared reference for diagnosis, frontline treatment, and referral. It also gives payers a clinical anchor for coverage decisions, grounded in current evidence rather than in an outdated therapeutic landscape.
Here's the part of this that doesn't get talked about enough, and I think it's actually the most important part. Guidelines show us what we don't know yet. By documenting where the evidence supports a strong recommendation and where it doesn't, they make clear which questions the field still needs to answer. That clarity helps direct research priorities, at the foundation level, at NIH, and within industry, toward the gaps that most need closing. The next version of any guideline is shaped by what the current one exposes.
That is the frame in which the upcoming HS guidelines should be read. They are not a final statement on how HS should be treated. They are the operating layer the field has been working toward, and the starting point for the next set of questions. The HS Foundation's role over the coming months will be to support clinicians, health systems, and payers in understanding what the guidelines say, what they do not yet say, and what comes next.
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More detailed clinical perspective will follow in subsequent pieces in this series.
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