Hidradenitis Suppurativa: Focus on Diagnosis

Therapeutic advancements have brought increased attention to hidradenitis suppurativa (HS), but the inflammatory condition remains under-recognized and under-treated. At the annual meeting of the European Academy of Dermatology and Venereology last month, Joslyn Kirby, MD, MS, MEd spoke about the disease and its treatment. Dr. Kirby is president of the HS Foundation (hs-foundation.org), and Associate Professor of dermatology at Penn State Health in Hershey, PA. She sits on the Scientific Advisory Board for DermTech.

What are the biggest unmet needs with regard to HS right now?

Joslyn Kirby: There are two things we really need to address with HS. One is just finding it. It’s being misdiagnosed, it’s not being seen. We need to get the word out to the public and colleagues in other disciplines that when people are getting these pimple-like lesions or boils repeatedly in the folds of the body to think of HS. (See image for representative photos of how HS can present.)

I remember getting into doing HS research around 2015, and the statistic was that people were waiting anywhere from 7 to 12 years before being diagnosed, which comes, obviously, before they can get on a biologic therapy. More recently the VOICE study found the wait is still 10 years on average. We haven’t made much headway in helping our patients get a diagnosis of HS.

Two, we need to help people get control over the condition. I’ve changed my approach to treatment and have changed how I think about defining ‘moderate to severe’ HS. It’s lesion counts, but also more than that.

How has your approach changed?

Dr. Kirby: We do clinical trials in our office. I was thinking one day as I was in the clinical trials office that people with HS often need to have five or more inflammatory nodules or abscesses in order to be eligible for a trial using an investigational therapy. As I reflected on my practice, I realized I very often had a higher bar for people in clinic. I was not using that same standard of five or more abscesses and inflammatory nodules. Very often people had more of them—10, 15—before I was talking to them about a biologic.

I also changed my approach to rely more on how the condition was impacting the patient, how moderate to severe the impact is on their quality of life, or their pain, and taking that all into measure.

Are there potential technology solutions that may help improve diagnosis?

Dr. Kirby: There is a real need for testing that can help us address that people have HS on their skin and it’s not being seen and diagnosed by other providers. So, is there an opportunity for a patient who might be at home, is either scared to go to a provider because of things they’ve been told about their HS or just have poor access—can they get a test to help them understand if they have this condition? If they got a result saying they have a high chance of having hidradenitis, it might prompt them to seek care.

We also need help from technology as we treat HS. We don’t have that single great therapeutic that works consistently for everyone. That means that patients are sometimes on a biologic as a trial to see if it will work, and if it doesn’t then we’re switching between biologics without useful data to tell us which one might be most effective. Biologics have side effects and can be expensive. Leveraging tools like genomic and multi-omic analysis, such as DermTech Stratum, could help us advance personalized medicine solutions. This kind of test could help us choose a high value therapeutic and could save patients time, effort, and money. I think it would help me, as a clinician have greater satisfaction knowing that I’m picking a therapeutic that’s going to help that patient sooner rather than later.

What does the treatment landscape for HS look like?

Dr. Kirby: The landscape for HS therapies is so bright! It gives me so much hope to see all the bench research that’s being leveraged to create the next generation of therapeutics. The number of trials that have been registered on clinicaltrials.gov has just exponentially increased. So, while we don’t have that single, effective, reliable therapeutic right now, I think it’s coming! Having something to help us choose the right therapeutic for the right patient will just complement the therapeutic advances that are coming.

What is the HS Foundation? How can dermatologists get involved?

Dr. Kirby: The HS Foundation’s mission is to create a world where no one suffers from HS. We’re making that happen through education and research. We have grants open for application. We’re working with the Dermatology Foundation to bring new researchers into careers focused on HS.

We also have many resources for clinicians, especially when it comes to fighting for drugs for our patients. I highly recommend the HSF’s templated prior authorization letters to help get coverage of medications.

We are also creating loads of education for dermatology and non-dermatology providers to help them diagnose HS and treat those people with HS.