HS is more common in the Black community than other racial and ethnic groups. The average prevalence of HS among African Americans is 1.3 percent compared with 0.07 percent of Latinos, and 0.75 percent of whites, according to a review published in the March-April 2021 issue of the Journal of Cutaneous Medicine and Surgery. However, Black people tend to go longer without a diagnosis or treatment and are underrepresented in clinical trials. Early and proper treatment is crucial to manage HS, so it’s important that Black Americans recognize the signs of HS and have timely access to expert medical care.
What Is Hidradenitis Suppurativa?
Also referred to as acne inversa, HS is a chronic, recurrent, and sometimes debilitating inflammatory skin condition that typically occurs in areas where the skin rubs together, such as the groin and armpit. The skin disease is clinically diagnosed by a medical provider and can affect one or multiple body areas. Signs of an HS breakout often include blackheads and painful pea-sized lumps on the skin. As symptoms worsen, tunnels connecting the lumps may form under the skin. These may develop as a result of skin lesions that go untreated for prolonged periods. Once tunnels form, they can leak pus and tend to heal very slowly, if at all. Stress, hormonal changes, excess weight, and exposure to humidity and heat can worsen these symptoms. Vivian Shi, MD, an assistant professor of medicine and dermatology at the University of Arizona and director of the Hidradenitis Suppurativa Specialty Clinic at the Banner University Medical Center in Tucson, Arizona cautions that because early HS lesions can mimic other less severe skin conditions, the disease is often misdiagnosed and treatment is subsequently delayed, leading to worsening of the condition.
Diagnosis and Treatment of HS in the Black Community
Early diagnosis and treatment are critical for HS management. Delays in diagnosis and treatment can lead to HS progression, scarring, and disability. Yet studies suggest that overall people tend not to seek medical care for HS-related skin lesions as quickly as they do for other skin conditions. Dr. Shi says this is commonly due to lesions appearing as more benign skin conditions that do not require treatment. Studies also indicate that placement of HS legions, typically in more intimate or private parts of the body, can lead to feelings of shame and make people more reluctant to seek medical care. Although early diagnosis and treatment are essential, Shi explains that it is not always an option for people of color, which may contribute to the increased prevalence of HS among the Black community. Medical experts have begun to examine the incidence of HS among Black individuals, and some preliminary studies have pointed to a potential genetic etiology in HS development among Black populations, according to a review published in April 2018 in the journal Dermatology. However, Shi notes that a lack of access to quality medical care coupled with a lack of research on how HS affects people of color has made Black people less likely to be diagnosed early and receive the appropriate care they need. According to a review published in May 2019 in the Journal of Cutaneous Medicine and Surgery, African Americans with HS face significant healthcare disparities. Due to socioeconomic status, inadequate access to care, and lack of information about HS, they are also less likely to participate in clinical trials, which severely limits what medical experts and dermatologists know about the effects of HS on Black people. That said, according to Shi, Black people tend to have more severe experiences with HS and are at a higher risk of developing other skin diseases such as squamous cell carcinoma, a type of skin cancer that can develop after having HS for a prolonged period of time.
Racial Disparities in Healthcare for HS
There are numerous racial disparities that Black Americans living with HS face. Studies show that Black Americans are more likely to be uninsured than white Americans. As of 2018, 9.7 percent of Black Americans live without medical insurance compared to 5.4 percent of white Americans, according to a report from the U.S. Bureau of Labor Statistics. Several factors impact access to medical insurance, such as high unemployment rates and poverty, and many of these conditions have gotten grimmer since the start of the COVID-19 pandemic. “Not only do many members of the Black community routinely suffer from a lack of access to comprehensive health insurance, but they also face racial bias and discrimination from medical providers,” says Shi. For instance, a study of racial bias in pain assessment and treatment published in April 2016 in Proceedings of the National Academy of Sciences of the United States of America found that 40 percent of first- and second-year medical students falsely believe that “Black people’s skin is thicker than white people’s.” Surprisingly, overwhelming research has supported this and other studies’ findings, pointing to many of the challenges that Black Americans face with their medical providers and discrimination, such as being undertreated for pain. Shi also notes that many Black Americans have an overall distrust of the healthcare system and medical providers due to the historical abuse and mistreatment of them by medical professionals in the name of medical advancement. Lack of health insurance and quality medical care coupled with historical and current accounts of racial discrimination within the healthcare system and among medical providers create a perfect storm for Black Americans to be more reluctant to seek medical treatment for HS.
Steps Toward Empowerment
Shi urges those diagnosed with HS not to lose hope and suggests four steps toward empowerment and healing:
