Hidradenitis Suppurativa (HS) Research: Where we are and the path forward

Note from Admin: One of the things that we often see and hear in patient discussions is questioning why we don’t have a larger supply of HS knowledgeable medical professionals. Slowly but surely, that supply is increasing. Here’s what a current medical student has to say about his journey to learning more about HS.

The causes of Hidradenitis suppurativa (HS) are not fully understood, partially because, for many years,
HS was misunderstood and overlooked within the scientific community, resulting in a lack of high-quality research. However, recent increased attention to HS has led to greater focus on investigating what might be causing HS and developing potential treatments. Over the last few years, several drugs have been approved to treat HS, and numerous others are currently under investigation.

Despite these advancements, clinical trials for HS often have significant limitations. HS typically
manifests around the second or third decade of life and is thought to be more common among female
patients. However, this stereotype does not fully encompass the diverse spectrum of patients I have
encountered in the HS clinic. Over the past year, I have had the opportunity to interact with HS patients who were teenagers, those whose symptoms began after the age of 50, and individuals with additional conditions such as Down syndrome.

Yet, when examining the results of drug trials for HS, it is evident that these groups are underrepresented. Patients under 18 are rarely included in drug trials, and older patients are generally excluded due to age limits or because they have other medical conditions. Similarly, patients with Down syndrome, cancer, or other conditions are also often excluded. This is problematic because these drugs will eventually be used in real-world settings where patients with such conditions will be treated with them. How can we ensure these treatments are effective if such patients are not included in the trials?

There is a pressing need for active efforts to include these patients in trials to better understand the
efficacy of treatments. Moreover, even with efforts to include diverse populations, other factors such as
socioeconomic status, financial stability, and distance to the clinic can also result in a lack of
representation in major drug trials. Patients who cannot take time off work, lack personal
transportation, or live too far from the clinic might be unable to participate in trials. This issue is
compounded by the fact that poorer social determinants of health often lead to more severe disease, further excluding a significant portion of these populations.

To address this, researchers need to actively bridge this gap. They can consider providing transportation
or minimizing the impact of missed work by offering adequate stipends. Additionally, creating
recruitment sites in rural and underserved areas can help ensure adequate representation. I strongly
believe that by being truly inclusive of patients from diverse backgrounds in HS research and clinical
drug trials, we can understand this disease better and improve health outcomes for all HS patients.

Rayad Shams, Medical Student and HS Research Fellow