The HS Coalition at SHSA – Findings on Gaps in HS Care

At the 2023 Symposium on Hidradenitis Suppurativa Advances (SHSA) congress, held on October 13-15 in Phoenix, Arizona, the HS Coalition presented new research that aimed to better evaluate the state and district-level factors that influence care access and outcomes for people living with HS in the US.
“Our research shows us that, depending on which state they live in, people living with hidradenitis suppurativa (HS) in the US face different challenges to accessing care, in part due to delay in diagnosis and restrictive insurance policies,” said Dr Steven Daveluy, co-chair of the HS Coalition and program director and clinical educator in the Department of Dermatology at Wayne State University. “Now that we understand these barriers, we can set in motion the work to overcome them.”

To understand the factors influencing insurance coverage and care, the HS Coalition conducted a targeted literature review, environmental scan, and analysis of data from California, Georgia, Louisiana, Michigan, and Washington, DC.

In part, the HS Coalition’s research found that once diagnosed with HS, many patients qualify for disability benefits. However, the research found that Supplemental Security Income or Social Security Association Disability Insurance applications receive an initial approval less than half the time at 39% to 48%. Reconsideration hearings for these applications require patients to wait 14 to 20 months, and still only around half (50%-63%) of those who have a hearing are approved.

“I know from my own journey with HS that it can be so difficult for anyone to speak up and ask for help. That’s why we’re so committed to doing the work of identifying and addressing these barriers that people face when they do speak up,” said Jasmine Espy, co-chair of the HS Coalition and founder and CEO of The Association of Hidradenitis Suppurativa and Inflammatory Diseases. “I want people living with HS to know that regardless of their circumstances and the challenges they are facing, there is hope and that things can get better.”

To learn more about the challenges facing the HS Community visit the What Is HS? page and to understand how policy reform can begin to address these issues, look through the information on the Resources page.