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Long neglected, hidradenitis suppurativa (HS) is finally getting attention. An immune-mediated disease that causes recurring boils and abscesses in the folds of skin, HS can be painful and often travels with physical and psychiatric comorbidities. Awareness and education about HS and its comorbidities are at an all-time high, and the flood gates are finally open for new treatments, explains Haley B. Naik, MD, MHSc, an assistant professor of dermatology and director of the Hidradenitis Suppurativa Program at the University of California, San Francisco.

Why was HS so neglected historically?

Haley Naik, MD: Several factors have historically contributed to HS being misdiagnosed and underrecognized, including a lack of research dollars to study HS, a disease that predominates in women and minorities. Also, HS is not a disease that is commonly introduced in medical education, which contributes to a lack of recognition by frontline providers and other medical specialists. This, coupled with ineffective treatments for decades, led many HS patients to stop seeking medical attention for their condition. Doctors didn’t know what they had and were not able to effectively treat their condition.

What has changed or is changing?

Dr. Naik: Due to a lack of understanding about HS and a lack of effective treatments, HS patients have historically had poor interactions with the health care system. Now that we have a better understanding of HS, have better treatments, and are listening to patients, we are hopeful that these advances will improve the lives of people suffering with HS. We would love for people to be able to get diagnosed early and get referred to a specialist who can offer swift and effective treatment early in the course of disease. This is our goal, but it is not yet a reality for all patients. We have a lot of work to do to reach this goal.

Tell us about these better treatments.

Dr. Naik: In 2015, the FDA approved the first therapy for HS, the TNF-inhibitor adalimumab (Humira). This opened the floodgates for HS treatment and generated a lot of interest in the disease. Adalimumab is not a uniformly effective treatment for all HS patients, but it has certainly changed the lives of many people living with HS. Studies are underway looking at other drugs, including interleukin-1 inhibitors, IL-23 inhibitors, IL-17 inhibitors, and JAK inhibitors. Ideally, all of these drugs will be life changing for patients living with this painful condition.

What are some common HS comorbidities?

Dr. Naik: Diabetes, cardiovascular disease, and obesity have been associated with HS. Comorbidities that are less talked about but are so important to screen for include psychiatric comorbidities. HS patients live with the pain and stigma associated with their disease, and this stigma can be quite socially isolating. We know from the literature that there are 2.42 times as many suicides among HS patients as compared with the general population.

What do we know about HS and pain?

Dr. Naik: Our current understanding is that there are two main types of pain associated with HS: nociceptive and neuropathic. We need multiple treatment modalities to address these various contributors to HS pain. In addition to addressing pain caused by inflammation, we also need drugs that target nerve pain. We have a lot still to learn about HS pain pathways, but it is becoming more clear that a successful pain management strategy will target pain from multiple angles.

What’s being done to change the landscape for HS patients?

Dr. Naik: The HS Foundation is working hard to improve awareness among frontline providers including emergency physicians, obstetricians/gynecologists, primary care doctors, and pediatricians, so we can make early diagnosis a reality. The HS Foundation’s Treatment and Research Committee is working to find knowledgeable providers in every state in the US, so patients have access to expert care. The Foundation is also guiding research efforts to improve diagnosis and treatment of HS. UCSF and HS Foundation have partnered to start HS PROGRESS, a longitudinal registry following HS patients over time so we can begin to understand HS clinical course and biology, with an ultimate goal of identifying novel treatment targets. There’s also an American Academy of Dermatology Expert Resource Group dedicated to HS. The goal of this group is to improve education, increase advocacy for HS, and improve insurance authorization for HS medications and surgery.

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