New report calls on policymakers to address the unmet needs of people living with hidradenitis suppurativa

7 March 2024

The Health Policy Partnership (HPP) has worked with an international expert group of patient advocates and clinicians to develop a report that outlines the impact of hidradenitis suppurativa (HS) on people’s lives and the barriers to receiving best-practice care.

The report, Call to action: Improving the lives of people with hidradenitis suppurativa (HS), highlights the urgency of addressing the unmet needs of people living with HS and provides a set of recommendations to guide policymakers and decision-makers.

HS is a chronic, inflammatory skin condition that affects around 1 in 100 people. It is characterised by recurrent flare-ups of painful nodules which can become abscesses that look like lumps or boils, and the formation of draining tunnels under the skin. HS can be accompanied by intense pain, an unpleasant smell and scarring. Many people living with HS face serious mental health challenges and a significant impact on their ability to work, study, socialise, have relationships and even complete daily activities.

The report includes quotes and stories of people living with HS, which highlight the wide-reaching impact the condition can have on people’s lives. It also highlights the policy and system barriers that prevent access to best-practice care, including shame, stigma and limited awareness among healthcare professionals. All these barriers contribute to long delays in people receiving an accurate diagnosis and inadequate access to appropriate treatment and multidisciplinary care (including critical psychosocial care). The report includes recommendations to support policymakers in ensuring equitable access to best-practice care for people living with HS.

Read the report