September 21, 2026

Guidelines Are a First Step. The Harder Work Comes Next.

By Haley B. Naik, MD, President, HS Foundation

I started caring for patients with hidradenitis suppurativa during my residency training, before there were any FDA-approved therapies for the condition. The patients who came to our clinic had often spent years searching for a diagnosis. But even once they had one, the treatment options available to us were limited. Early in my career, I felt like most of the time all I could offer my patients was a hand to hold through their grief and pain. Tears and tissues were a permanent fixture in clinic visits. And I was deeply frustrated with the real limits of what I could offer the people sitting in front of me who were suffering.

The eighteen years since have seen remarkable change and advancement. For the vast majority of the two centuries since HS was first described, there were no approved therapies. Today there are three, and several more promising agents are advancing through the pipeline. Thanks to the HS Foundation’s leadership, awareness of this condition has expanded and research funding has increased. The patient voice has appropriately risen and demanded more from science and medicine. Industry, academia, and clinical care have all moved, slowly at first and then noticeably faster and collaboratively, toward improving the lives of people living with this progressive condition.

Standardized clinical guidance must keep pace with this movement so that people with HS can access the therapies they need for their condition. The upcoming HS clinical management guidelines jointly developed jointly by the American Academy of Dermatology and the Hidradenitis Suppurativa Foundation will ensure that practitioners know how to use the tools available today to best care for people with HS. 

What the guidelines work has involved

The guidelines were developed jointly by the American Academy of Dermatology and the HS Foundation, led by clinicians and researchers who work in HS every day and by methodologists with expertise in guideline development. The work group followed the GRADE framework, which provides a structured way to evaluate the certainty and quality of evidence supporting each potential recommendation.

The process was rigorous. The workgroup reviewed every available piece of published literature on every therapeutic option for HS. Recommendations were weighed not only on efficacy and safety, but also based on access, cost, and whether a given therapy was more appropriate for some patient subgroups than others.

As the workgroup reviewed the evidence for each therapeutic question, it became clear that for many important aspects of HS care, the evidence was insufficient to support a recommendation. Aspects like pain management, wound care and dressing selection and diet modification are areas patients often ask about, providers need more guidance on, and where evidence is still needed. Gaps in the evidence base are now formally part of the guidelines themselves, in a dedicated section called Research Priorities, which we hope will serve as a roadmap for the work ahead of us in this field.

What I wish more clinicians understood now

If I could change one thing about how HS is treated today, it would be to ensure timely intervention with systemic therapy. This painful and disfiguring condition impacts life trajectory through school and work absences, work productivity, income attainment and social isolation. Timely treatment can change the life trajectory of patients.

We have 3 FDA-approved therapies for moderate to severe HS, but there is no clear definition of what moderate HS looks like. Moderate HS has many faces. Moderate HS looks like scarring and tunnel development. It also looks like patients in excruciating, sustained pain with impaired quality of life and limited function. When clinicians see these signs, we should be considering systemic treatment.

Dermatologists already know how to do this because we exercise these skills when we manage acne. The moment we see the first hint of scarring, we are ready to prescribe isotretinoin, and we do it because we know that early intervention prevents permanent irreversible damage, protects quality of life and alleviates downstream impacts like job and income attainment. 

We need to apply a similar principle to HS. And now with the development effective treatments and improved HS awareness, we have an opportunity to offer patients timely treatments that stand to change lives.

Guidelines are a first step

The publication of the guidelines is an important milestone, but they are the beginning of an effort rather than the end of one. Three things need to happen next.

The first is access. FDA approval of a therapy does not guarantee that patients can access that therapy. Coverage decisions, prior authorization processes, step therapy and the broader machinery of how care reaches patients all sit downstream of the guidelines. These factors determine whether the people who need these therapies the most are actually able to access them. Advocacy with federal agencies and private payers is already underway, but we need more of it. With the weight of these guidelines behind that effort, our hope is that advocacy will land with more force.

The second priority is research. The Research Priorities section of the guidelines is, in effect, an invitation. It highlights gaps in the field. For investigators, foundations, NIH program officers, and industry partners looking for where their work can make a difference, this section is a roadmap. The next generation of guidance will reflect the progress we make in these research priorities over the coming years.

The third priority is maintenance. The HS therapeutic pipeline is bursting with new and promising options for HS, and several new therapies for HS are expected to receive FDA approval in the near future. The AAD has a defined process for amending published guidelines with new recommendations as new evidence becomes available, and the workgroup has already begun discussing how that process will be applied so these guidelines remain up to date and clinically relevant. 

What these guidelines will do

The guidelines, when published, will offer clinicians a clear picture of what the evidence supports in HS care today and establish the standard of care. They will provide payers with an evidence-based reference for coverage decisions. They will give patients a more consistent and high-quality experience across the specialties they encounter. They will also outline the work that is left to do to advance HS care.

For clinicians, the most important ask is to treat HS in a timely and confident manner, advocating for the care patients need with the backing of evidence and the AAD and HSF. For researchers, industry, and the foundations supporting this work, the most important ask is to use the Research Priorities section as the agenda for the next several years. Patients, clinicians, and industry should all be able to see themselves in this document and use this document to advocate for needed care based on robust objective evidence. The work ahead is to make sure what is written in these guidelines reaches the people who need it.

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