Patients With Hidradenitis Suppurativa Face Many Barriers When Accessing Care, Says Dr Haley Naik

Some of the many barriers patients with hidradenitis suppurativa (HS) face include accessing knowledgeable providers, insurance coverage of treatment, and the way the health care system is set up, said Haley Naik, MD, FAAD, associate professor of dermatology, University of California, San Francisco, School of Medicine.

Transcript

What barriers to care do patients with hidradenitis suppurativa typically face?

There are many barriers that these patients experience in accessing care both in terms of accessing providers and accessing treatments. As a starting point, I think a major barrier for HS patients has been accessing knowledgeable providers—providers that know what HS is, know how to treat it, have some understanding of what the therapeutic options are. As a result of that kind of disconnect between an existing entity or a diagnosis and a provider's knowledge about that diagnosis, patient-doctor rapport has been very challenging to achieve historically, in this patient population. One of the main hurdles that patients report is just not being able to see somebody who, one, can diagnose their condition; visiting providers multiple times over the course of, on average 7 to 10 years before getting a diagnosis; and then once they're able to see someone who knows or has heard of HS really being able to access treatment. I think knowledgeable providers is one of the main barriers that patients experience in accessing care for their condition.

Insurance coverage that allows them to see knowledgeable providers is another barrier. Insurance coverage that allows them to access the therapies that would be appropriate for their condition is yet another barrier. There's only one FDA-approved treatment for HS; many of the treatments we use for moderate-to-severe disease are off label and all of the treatments that we use for mild HS are off label. So, being able to work with a provider who is knowledgeable about HS and is able to go through the hoops of trying to get insurance authorizations for off-label medications is another major barrier.

Then I'd say the way that our health care system is set up, timely care for acute HS flares is another major barrier that patients report. This is a disease that waxes and wanes and when it is acutely flaring, it is incredibly painful. And trying to get in to see a dermatologist in the context of a flare who can provide acute care is a real challenge, because there are a limited number of dermatologists in the country and in some cases, no dermatologists in many parts of the country.

Then, the last barrier I’ll mentioned is that the health system can be very challenging for these patients to navigate. This is a condition that often requires multidisciplinary care, not just to manage HS but to manage the associated comorbidities. And coordinating that multidisciplinary care can be a huge challenge.