Most Patients With HS Aren’t Aware of Approved Treatments

While most patients with hidradenitis suppurativa (HS) are satisfied with their treatment options, those who aren’t are more likely to have experienced undertreatment or have a lack of awareness about available therapies, according to a recent study published in the Journal of Drugs in Dermatology.

HS is a long-term inflammatory skin condition that attacks hair follicles, causing painful lumps, abscesses and scarring, typically in sweaty areas of the body such as the armpits, groin and under the breasts.

According to the Cleveland Clinic, folks who are more likely to experience HS are females who may have excessive hair growth (hirsutism), a family history of the condition, fluctuating sex hormones (estrogen and androgens)—which is common after puberty and before menopause—smoking and obesity.

It's believed to affect about 1 in 100 people.

A patient with hidradenitis suppurativa under their armpit with visible red abscesses.

The condition can flare up unpredictably and significantly affects a person’s quality of life. Those living with HS may struggle with social isolation, intimacy and mental health challenges such as anxiety and depression.

According to the survey, treating HS is complex and often requires taking a number of medications, including antibiotics, hormone therapies and immunosuppressants.

However, many of these treatments are used off-label, and at this time, only two biologic therapies—Humira (adalimumab) and Cosentyx (secukinumab)—have been approved by the FDA for HS treatment.

Outside of medication, some patients may need surgery to remove damaged tissue or drain deep lesions, but these procedures can be invasive and potentially involve skin reconstruction.

Because of the burdens behind HS and the limited availability of approved therapies, researchers of the study sought to explore how patients felt about their current treatment options.

Researchers also looked at how well patients understand newer FDA-approved therapies and their expectations for future care.

To conduct this investigation, researchers used an 18-question online survey that collected responses between November and December 2023.

Participants had to be at least 18 years old and currently living with HS. The survey asked for demographic information such as age, race, ethnicity and gender.

Questions included free-text responses, multiple-choice options and scaled answers using a modified Likert format.

The responses were analyzed using Fisher’s exact test to look for relationships between each of the variables.

Data found that out of 501 people living with HS, the average age of participants was 37, and the majority (92%) identified as women.

Most participants reported that their HS symptoms began around 20 years old, but the average age of formal diagnosis was 29 years old, pointing out a delay of about 9 years.

When it comes to managing HS, the study revealed that most respondents were using multiple treatments, with an average of 2.36 treatments per person.

The most commonly used were antimicrobial washes (69%), antibiotics (55%) and biologic therapies (29%).

Despite these efforts, only 18% of participants said they were satisfied or very satisfied with their current treatment plans.

One key finding is the lack of awareness about FDA-approved treatments.

The report revealed that 74% of respondents were unaware of any FDA-approved options, and 56% said they had never discussed these therapies with their healthcare provider.

Even among those using treatment, about 49% were unsure whether their medications were FDA-approved.

However, respondents did express optimism.

About 71% said the recent approval of Cosentyx for HS treatment in October 2023 gave them confidence in the development of future therapies.

A majority believed that more FDA-approved options would positively impact their physical health (86%), mental health (78%) and even personal relationships (60%).

However, gaps in care do remain.

Among those with moderate HS (Hurley stage II), which occurs when single- or widely-spaced lesions return, only 24% reported using biologics.

Those with severe disease (Hurley stage III) or multiple interconnected abscesses, just 51% were on biologics.

Researchers suggest this underuse may be related to many HS patients being treated by non-dermatologists, who may be less familiar with condition-specific therapies.

Lastly, the survey revealed major barriers to accessing effective care, including a lack of awareness (48%), limited treatment options (43%) and high costs (31%).

These robust results give important insight into the experiences of those living with HS.

With over 500 responses from a national sample, it provides a strong look at how patients manage their condition, what treatments they use and what they know about FDA-approved options.

It also includes personal feedback from patients, which helps show how HS affects daily life and where gaps in care may exist.

It does, however, have some limitations.

For example, most people who responded to the survey were white women (59%), which may not fully represent the full population of those with HS.

Researchers noted that previous studies have shown that the condition is more common among Black and Latinx people.

In addition, the survey only captured responses at one point in time, not showing how things change over time.

There’s also a possibility some answers were not completely accurate, as participants self-reported their experiences.

Lastly, many respondents said they weren’t aware of Cosentyx’s approval, which may have affected how they answered questions.

Researchers suggest that future studies should explore deeper why patients with HS remain unaware of or undertreated with FDA-approved options.

They also recommend focusing on barriers to care, better communication between patients and providers, and more effective ways to educate and inform patients about available treatments.