Exploring the Experience of Black Americans Living with Hidradenitis Suppurativa in the United States Healthcare System: A Narrative Review

July 25, 2025

This plain-language research summary was generated by AI, courtesy of HS Simplified.

AI Generated Content Verified By: Julia Riley, M.D. | Northwestern Feinberg School of Medicine

Exploring the Experience of Black Americans Living with Hidradenitis Suppurativa in the United States Healthcare System: A Narrative Review

In 2025, a review highlights the challenges Black Americans face with hidradenitis suppurativa (HS), a chronic inflammatory skin disease causing painful lumps and tunnels. Even though HS is more common in Black patients than other races, Black patients often encounter delays in diagnosis and treatment, exacerbating health disparities due to systemic healthcare barriers. By addressing these challenges, through strategies like improving access to care and including more Black patients in clinical trials, healthcare equity can be enhanced.

Understanding Hidradenitis Suppurativa (HS) and Racial Disparities

Hidradenitis suppurativa (HS) is a long-lasting skin disease that causes painful lumps, abscesses, and tunnels under the skin, usually in areas like the armpits and groin. It can make life very tough, causing pain and sometimes leading to missed work and lower quality of life. HS is especially important to study because it affects Black Americans at higher rates than other groups in the USA, and these patients often face more problems getting good care.

Why Do Disparities Exist?

Black Americans face many challenges in the healthcare system. Some of these challenges are caused by income inequality (having less money), bias from healthcare workers, and mistrust of the healthcare system. This means they are more likely to have worse health outcomes and more chronic diseases, like diabetes, HIV, obesity, and HS. For HS in particular, even though Black people make up about 13% of the US population, they account for about 30% of HS cases and 60% of hospital stays for HS.

Barriers to Proper Care

Black patients with HS often wait longer to get a diagnosis—about 5 years compared to 3 years for White patients. This delay means the disease is usually worse when they finally get help, leading to more pain and hospital stays. These delays can happen because Black patients are more likely to see a general doctor or surgeon first, instead of a dermatologist (a skin doctor). Also, many Black patients rely on emergency rooms for care instead of seeing a specialist, which often leads to only short-term help and not long-term solutions.

Another problem is health insurance. More Black Americans are uninsured or rely on government programs like Medicaid or Medicare, while White patients are more likely to have private insurance. Some doctors do not accept Medicaid or Medicare, so Black patients may have to travel further to get help.

Differences in Treatment

Studies found that Black patients are sometimes given different treatments or advice for HS than White patients, even when the same options should be available. For example, Black patients may be prescribed medicines that are not the best or may not be offered advice on things like diet or exercise as often. This can lead to more pain and frustration with their care.

Representation in Research

Clinical trials, which test new treatments, often do not include enough Black patients. Even in cities with large Black populations, most of the people in HS trials are White. This is a problem because it means we do not always know how well treatments will work for everyone. Reasons for low participation include mistrust, not being able to miss work, and transportation problems.

Access to Good Information

Health literacy—the ability to find and understand health information—tends to be lower among racial minorities. Black patients with HS may not get accurate information about their disease, especially if they wait years before seeing a specialist. Some may also be unsure about using newer medicines called biologics, which can help with HS, because they are worried about side effects or missing work or school.

What Can Be Done?

Doctors can help by learning more about how HS looks on darker skin and by understanding the challenges Black patients face. Medical schools should teach more about skin diseases in people of color. Black patients with HS should be referred to dermatologists quickly, and doctors should help them with paperwork and finding support groups. Clinics can also make it easier to get appointments, especially during HS flare-ups, and offer more flexible hours.

Improving access to health insurance and making sure more doctors accept Medicaid and Medicare would also help. Policymakers could expand programs like Medicaid to cover more people. Clinical trials should work harder to include Black patients by making participation easier and partnering with Black investigators. Patients should also be given clear, trustworthy information about HS and its treatments.

Limitations of the Study

This review is based on past studies, many of which used surveys or old medical records. These methods can have problems, like people not remembering details correctly or only certain groups answering surveys. So, the results might not represent everyone with HS.

Conclusion

Black Americans with HS face more difficulties in getting good care than White Americans, leading to worse health. To fix this, we need to teach healthcare providers more about these challenges, make it easier for Black patients to get accurate information and good insurance, include more Black patients in research, and help them see skin doctors faster. By working on these things, we can help make healthcare more fair for everyone with HS.

Author(s)

Nicole A. Negbenebor, Julia M. Riley

Read Original Paper

https://link.springer.com/article/10.1007/s13555-025-01496-x