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Advocating for Change in the Lives of People with Hidradenitis Suppurativa

Posted by
Danuta Marchi, External Engagement, Immuno-Dermatology and Rheumatology

At UCB, we are committed to improving the lives of people living with hidradenitis suppurativa (HS), a chronic, painful, inflammatory skin condition that can have a significant and detrimental impact on patients’ lives.

Today, there are several barriers for people living with HS, which can impede their ability to live life to the fullest potential. These include insufficient awareness of HS and delays in diagnosis.  These factors can impact the timely and appropriate care that people with HS receive. Additionally, the stigma associated with the disease can negatively affect mental wellbeing and interpersonal relationships.1 Addressing these barriers is a crucial step towards improving lives.

A new international report, Call to action: improving the lives of people with hidradenitis suppurativa (HS), published by The Health Policy Partnership (HPP), communicates the condition’s significant impact and advocates for change by highlighting policy and system barriers to better HS care. The report, published in February 2024, was led by HPP with guidance from a multi-disciplinary Steering Committee. It was developed based on literature review as well as some interviews with people living with HS and healthcare professionals. The research focused largely on ten countries - Canada, Denmark, France, Germany, Italy, Japan, the Netherlands, Spain, Sweden and the United Kingdom. The insights from people living with HS contained in the report serves as a powerful call to action for a deeper understanding of the impact of this debilitating disease on patients’ lives.

The report highlights ten priority recommendations including raising awareness of HS among the general public, employers and healthcare professionals. The focus on increased awareness with these audiences aims to mitigate stigma, encourage people to seek care, accommodate the needs of employees living with HS and improve referral rates and the speed of diagnosis. You can read the full list of recommendations in the online report here

At UCB, we firmly believe that implementing these recommendations will significantly enhance the lives of people with HS. By collaborating with the community to enact these changes, we can collectively help to ensure that people living with HS receive the necessary care and support they need today and into the future.

This report was developed as part of a project which is led by The Health Policy Partnership with guidance from a multidisciplinary Steering Committee. HPP was commissioned by UCB, which initiated and funded the project. 

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Posted by Takieyah Mathis, 17 April 2024

Thank you for bringing a spotlight to this condition!