Barriers to Health Care Access for People with Hidradenitis Suppurativa

April 1, 2025

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

AI Generated Content Verified By: Leandra Barnes, M.D. | Stanford Medicine

Barriers to Health Care Access for People with Hidradenitis Suppurativa

Hidradenitis Suppurativa (HS) is a chronic skin disease causing painful boils that affects about 1% of the U.S. population, notably among women and Black Americans. Patients often face a 7-10 year delay for diagnosis due to structural and social barriers, compounded by healthcare providers' limited understanding of HS biology, leading to mistrust and complicating access to treatment. Efforts are ongoing to enhance provider knowledge, treatment access, and patient support to improve care quality for HS individuals. 

What Is Hidradenitis Suppurativa (HS)?

Hidradenitis suppurativa (HS) is a long-lasting skin disease that causes painful lumps, bumps, and tunnels under the skin, most often in places like the armpits, groin, or under the breasts. These lumps can break open and leak pus, which can be embarrassing and very painful. HS affects about 1 out of every 100 people in the U.S. It is more common in women and in Black Americans. People with HS can have a lower quality of life because of the pain, scarring, and the way it makes them feel about themselves.

Barriers to Getting Care for HS

Barnes and other researchers found that people with HS face many obstacles when trying to get the care they need. These barriers come from three main areas:

• Structural barriers: Problems with the health care system, like insurance, cost, and not enough specialists.
• Provider-related barriers: Doctors and nurses may not know enough about HS or may have negative attitudes.
• Patient-related barriers: Feelings of embarrassment, stigma (feeling judged), fear, and even distrusting doctors.

Structural Barriers

Insurance and money are big issues. Many treatments for HS, like biologics (special drugs for inflammation), are expensive or not covered by insurance. Some people don’t have insurance at all. Even getting to a doctor who knows how to treat HS can be hard, especially for people who live far from cities or don't have transportation. There are not enough skin doctors (dermatologists), and wait times can be long.

HS also often needs care from many types of doctors—for example, for pain, mental health, or nutrition. But it’s hard for patients to coordinate all these visits, and it costs money and time.

Provider-Related Barriers

Another big problem is that many health care providers, including some dermatologists, don’t know enough about HS. This means people often get misdiagnosed (told they have something else, like acne or boils), so there is a delay—sometimes 7 to 10 years—before they get the correct diagnosis and treatment.

Doctors may also not know the best treatments or how to help patients manage pain. Pain is a huge problem in HS, but sometimes doctors don’t ask about it or don’t offer enough help. Some patients feel their doctors don’t listen, rush them, or even judge them about their weight or hygiene, making them feel ashamed and less likely to seek care.

Patient-Related Barriers

People with HS often feel embarrassed about their skin and fear others will judge or avoid them. This is called stigma. Many feel too ashamed to go to the doctor or talk about their symptoms, especially if they’ve had bad experiences before. Some people also fear side effects from treatments or don’t trust the medical system, especially those from communities that have been treated unfairly in the past.

What’s Being Done to Help?

• Teaching providers: Efforts are underway to help all doctors recognize HS sooner and learn about the best treatments, including how to help with pain and mental health.
• Improving treatment access: Some programs help patients get expensive medications faster or for less cost, like working with specialty pharmacies or financial assistance programs.
• More research and new treatments: Scientists are working on new medicines and ways to make studies more fair and helpful for all groups of people with HS.
• Support groups: Both in-person and online groups help people with HS feel less alone, get advice, and find out about new treatments.

Limitations and Challenges

There is still a lot to learn about HS. Many studies have small numbers of patients, and not all groups are equally represented. Even when people get care, the current treatments don’t always work well or may have side effects. Many patients still feel stigma and don’t trust the system. More research, better education for doctors, and improved support for patients are needed.

Takeaway

People with HS face many hurdles just to get a diagnosis, see a specialist, and get the right treatment. These problems are even worse for people without insurance or from communities of color. Doctors and scientists are working to make things better, but it will take time, more research, and a team effort to make sure everyone with HS can get the care they need. In the meantime, support and understanding—from doctors, family, and other patients—can make a big difference.

Author(s)

Leandra A Barnes, Fonette Fonjungo, Haley B Naik

Read Original Paper

https://www.sciencedirect.com/science/article/abs/pii/S0733863524001153?via%3Dihub