Barriers to HS Treatment Access

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.

One unassuming Tuesday morning, I walked into a patient’s room to recruit her for a Hidradenitis Suppurativa (HS) research study. During our conversation, she shared that her day began at 4 AM, and she drove four hours to make it to her appointment that day. We were the nearest HS specialty clinic available, and she had waited multiple months for the visit.

Stories like this are not uncommon among HS patients I have worked with during my research fellowship. A lack of certified dermatologists who regularly treat HS or feel comfortable managing patients with HS represents a core barrier for those seeking care. This has led to many patients traveling multiple hours or crossing state lines to find appropriate treatment. While feasible for some, it is inaccessible to many who have demanding jobs, familial duties, or financial constraints. Even if patients have flexibility in their schedule to travel to see a dermatologist, they might lack access to a vehicle or funds for air travel. Some HS patients I have spoken to take multi-hour bus rides to come to our clinic every few months.

Additionally, concern over lack of health insurance is often a huge source of anxiety for those seeking HS treatment. While some financial support programs do exist, they are often extremely limited in scope, have a time-consuming or confusing application
process, or lack a guarantee of aid. Even when patients are insured, it might not adequately cover all their medications, especially the biologics that are a key component of treating patients with moderate to severe HS. Consequently, dermatologists who are committed to caring for HS patients frequently find themselves grappling with the obstacles of repeated insurance denials.
Through all these challenges, I choose to speak of hope for HS patients.

As the number of FDA-approved treatment options available for HS continue to grow, it may increase
access for HS patients who have not responded to initial therapies. Dermatologists in academic institutions such as Dr. Chris Sayed at UNC are actively working to increase accessibility by training a new generation of resident physicians and medical students who are more passionate and better equipped in caring for HS patients in their own
future practices.

I am one of those medical students. Engaging with HS patients and understanding the adversities they encounter has deepened my commitment to exploring the social determinants that intertwine with their health. I believe that as future physicians, we must both treat a patient’s disease while actively engaging in advocacy, service, and research beyond the clinical setting to highlight and address the barriers patients face when seeking care. Through this, we can break down some of the barriers HS patients face and provide holistic care. Breaking down this barriers ultimately will lead to reduced delays in care and improved patient outcomes.

Rayad Shams, Medical Student and HS Research Fellow