The limited treatment options available and lack of research on how HS affects patients with skin of color has left many patients struggling to receive the appropriate care they need to improve their quality of life.
Hidradenitis suppurativa (HS) is a chronic, debilitating skin disease; however, it remains poorly understood, especially among patients with skin of color. Individuals with skin of color are less likely to receive a timely, appropriate diagnosis from a specialist and less likely to enroll in clinical trials due to multiple factors including lower socioeconomic status and inadequate access to care. For these reasons, patients with skin of color and HS tend to remain undiagnosed and undertreated.1
The understanding and available treatment of HS lag behind other chronic skin conditions such as psoriasis and atopic dermatitis. In a review, published with coauthors Dylan Lee, MD, and Ashley Clark, MD, in Dermatology, we outlined the literature gaps that need to be addressed to improve the care of individuals with skin of color and HS. Our findings showed significant progress needs to be made to better understand the pathogenesis, genetics, treatment, and impact of this disease on patients with skin of color.1
Addressing the Gaps in Medicine
There is an imbalance between the burden of HS in skin of color populations and the research conducted in this cohort. African Americans are estimated to make up 65% of the HS population in the United States, have the highest 1-year incidence among all age groups, and double the incidence compared with Caucasian individuals. However, few HS studies include individuals with skin of color. Our review found only 2 trials that included African Americans, but they only made up 20% of the study cohort.1 This underrepresentation in clinical research results in a lack of data on HS prevalence and epidemiologic trends, such as heterogeneity among different racial subgroups, epidemiology, natural history, causes (genetics, microbiome, immune dysregulation, wound healing), and variable responses to treatment.
To better address the needs of patients with skin of color and HS, research needs to address potential differences in adnexal anatomy. For example, persons of African descent have larger, more numerous, and more productive apocrine glands compared to Caucasian persons. In addition, more research on genetic mutations and polymorphisms is needed to better understand the relationship between HS and HS-related syndromes among patients with skin of color, such as polycystic ovary syndrome, inflammatory bowel diseases, follicular occlusion tetrad, pyogenic arthritis, pyoderma gangrenosum, and acne. Immune signature differences within racial subgroups should also be further investigated in order to develop more targeted therapies for patients with skin of color.
Dermatology is slowly making efforts to improve the documentation of various skin diseases among patients with skin of color, yet Caucasian patients remain the major cohort in clinical research and textbooks. This is especially true in textbooks where clinical photos consist of mostly fair-skin types. The majority of subjects who participated in the clinical trials for adalimumab (Humira) (the only approved medication for the treatment of HS) approval were Caucasian. Few studies to date assess whether this treatment option is as effective for nonwhite patients.1
While additional effort is needed within the medical community to include more patients with skin of color in clinical research, one barrier to increasing African American and Hispanic research participants is difficulty in getting patients with skin of color to study sites. We are faced with a revolving question: Why don’t we have enough data on patients with skin of color? The very reason lies in our inability to reach these populations. Healthcare access is influenced by socioeconomic status and geography, as well as insurance coverage. Low socioeconomic status and lack of insurance or private insurance are common among individuals with skin of color, who are also more likely to live in rural or urban areas that do not have easy access to specialists.
In order to gain more data on a disease with higher prevalence in skin of color patients, we must find ways to reach these populations so that they can be diagnosed earlier. This will allow us to enroll patients into various studies, both translational and clinical, as these data are crucial in developing medications that are more tailored to these subgroups. Galvanizing the medical community to recognize HS as an undertreated and underdiagnosed disease, especially among patients of color, is one way to address this gap. There are not enough dermatologists in the country or in the world to serve underrepresented communities, but one solution would be to educate primary care providers and community leaders in rural areas to better recognize the condition, diagnose patients earlier, and streamline referral to specialists.
Patients with skin of color are often misdiagnosed for years due to the lack of access to a specialist, and therefore do not receive appropriate treatment early during their disease course. HS is frequently misdiagnosed as sexually transmitted infections, methicillin-resistant Staphylococcus aureus infections, or simply recurrent boils. Delayed diagnosis leads to HS progression, scarring, disabilities, and development of aforementioned comorbidities. As a result of misdiagnosis, HS patients do not receive the appropriate treatment. In Arizona, a significant portion of my patients are Hispanic, Native American, or African American. They tend to present to a dermatologist and receive a diagnosis of HS much later than Caucasian individuals, sometimes 20 to 30 years after initial disease onset.
Closing the Gap?
One option is to incentivize dermatologists and specialists to spend time in rural and underserved communities. This could be achieved by collaborating with our industry partners to help specialists reach those areas. These partnerships could allow specialists to educate local health care providers in underserved communities, including primary care practitioners, nurse practitioners, gynecologists, infectious disease specialists, and urgent care and emergency department providers. Practitioners from these communities should be encouraged and supported to attend educational programs related to HS.
There are trends in dermatology offices to screen patients for HS during routine office exams. While non-dermatology practices might not find it feasible to screen during routine visits, there are resources, such as the HS Foundation, that have a list of HS specialty clinics that providers can refer patients to if HS is suspected.