Act on HS: webinar highlights the barriers often faced by people with hidradenitis suppurativa

The Health Policy Partnership (HPP) recently hosted the webinar ‘Act on HS: tackling the unmet needs of people with hidradenitis suppurativa’. During the webinar, we sought to highlight the impact that hidradenitis suppurativa (HS) has on people’s lives, and the policy and systemic barriers to best-practice care.

Professor Falk Bechara, from the International Center for Hidradenitis suppurativa/Acne inversa (ICH) of the Ruhr-University, opened the event by providing an overview of HS. HS is a chronic inflammatory skin condition that affects around 1 in 100 people worldwide. 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.

Following this, Susanne de Goeij, Hidradenitis Patiënten Verenigning, spoke about what it is like to live with HS. After sharing a video which outlined the impact of HS on people’s lives, Susanne gave a detailed overview of her own experience and the challenges that people with HS face. She outlined how the condition has affected her school, work and personal life, going on to emphasise that HS symptoms go beyond the skin, with people often experiencing fever flashes, fatigue, sleep problems and mental health issues. When seeking care, people with HS can encounter frequent misdiagnosis, mismanagement and referrals to several different specialists with limited knowledge of HS. In her conclusion, Susanne suggested that care for HS should include access to accurate online information as well as well-informed primary care physicians and specialists.

HPP Director of Research Jody Tate, who was moderating the event, then moved into a panel discussion and audience Q&A. During the discussion:

• Chevonne Smellie, Hidradenitis and Me, outlined that limited access to specialists who have appropriate knowledge of HS and limited access to effective treatments are the biggest barriers for people living with HS.
• Susanne highlighted the need for more effective and affordable wound care.
• Falk emphasised that limited awareness among many healthcare professionals is a significant barrier to the delivery of best-practice care.
• The panellists discussed the importance of multidisciplinary care that takes an individual, holistic approach to treatment, given that HS is often associated with a number of different health conditions and there is no one-size-fits-all approach to treating it. The group also discussed the importance of involving people with HS in decisions over their treatment and providing them with the information they need to play this role.
• Susanne spoke about how technology can help to improve delivery of care. She brought up the example of HS Coach, an app being developed in the Netherlands which lets people with HS monitor their symptoms. When a flare-up occurs, the app notifies the person’s physician, enabling an urgent appointment.

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