Expert health professionals from Aragon evaluate the challenges in the approach and management of Hidradenitis Suppurativa

The session, organized by the Aragón Health Research Institute (IIS Aragón) with the collaboration of Novartis, included the participation of the managing director of the Aragonese Health Service, Dr. Ana Cristina Castillo; the head of Service of the Miguel Servet University Hospital and president of the AEDV, Dr. Yolanda Gilaberte, and the president of ASENDHI, Silvia Lobo, among others.

The Aragón Health Research Institute (IIS Aragón) has organized, with the collaboration of Novartis, the 'HS Day 2024', in which the main challenges faced by the Aragonese health system in the management of Hidradenitis Suppurativa (HS) have been addressed.

The meeting had the participation of the Managing Director of the Aragonese Health Service, the Dr. Ana Cristina Castillo; The Dr. Yolanda Gilaberte, head of the Dermatology Service at the Miguel Servet University Hospital (HUMS) y president of the AEDV, and Silvia Lobo, president of ASENDHI, among others.

La coordinator of the clinical research unit of the IIS Aragón, Doña Eva López, was in charge of starting the day.

The main objective of the session was facilitate a space for dialogue and sharing about the current comprehensive approach to HS, both from the point of view of the health professional and from the perspective of the patient.

HS is a chronic, non-contagious, recurrent and debilitating inflammatory skin disease, which is characterized by the presence of deep, inflamed and very painful lesions in the armpits, groin, external genitalia, buttocks, perianal and perineal areas and submammary and intermammary areas. mostly^1,2. It is a pathology that can lead to serious comorbidities, having implications on both a physical, emotional and social level.³. Currently, the disease has a prevalence of approximately 1% worldwide.^3,4, nearly half a million people in Spain suffer from it⁵.

"In Aragón there are about 1.100 patients diagnosed with HS. For this reason, we consider it essential to generate information and dissemination sessions like this among health professionals, since they have the potential to improve the diagnosis and treatment of the disease. These sessions not only improve the competence and knowledge of healthcare professionals, but also contribute to more effective and personalized care for patients.", explained the Dr. Gilaberte.

Unmet needs

During the session, key topics related to the management of HS in Aragon were addressed, emphasizing the unmet needs of patients, existing therapeutic novelties and the challenges faced by both patients and health professionals in the quality of care.

In this regard, the Dr. Castillo has indicated that “HS specialists and patients in Aragon face various challenges in their current approach, common to the rest of Spain, such as late diagnosis, lack of general awareness about the pathology, access to various treatment options and the high psychosocial impact it generates. the illness. In our opinion, addressing these challenges requires continuing to promote awareness, research and interdisciplinary collaboration.” 

For its part, the Dr. Gilaberte has pointed out that HUMS has a comprehensive HS management project, whose objective is “harmonize the criteria when addressing HS, creating a patient registry and increasing the care offer”. Furthermore, he added that “Sharing unmet needs, both of the patient and the healthcare professional, is key to improving patient care.".

Silvia Lobo On his part, he wanted to highlight the importance of patient associations and explained that the Association of Suppurative Hidrosadentis Patients “It plays a fundamental role, because it is dedicated to informing and educating patients, raising awareness and training them so that they can self-control the pathology and make the disease visible. Added to this is the fact that it provides support and offers reliable information to patients and families, with the main objective of creating social awareness and contributing to improving the quality of life of all of them.".

A reference document for the management of HS

During the day, the 'HS White Paper', a relevant advance in the management and care of the disease that analyzes the situation of the care process. It is a document that also offers guidelines to improve the diagnosis and treatment of the disease, in addition to providing support to patients and advocating for public health policies that prioritize HS.

Matías Perez, Director of Access and Solutions at Novartis, has indicated that “supporting patients, health professionals and health systems in the search for improvements is our main objective, which is why, as a company, we promote various projects in collaboration with all the actors in the health system that contribute to to improve the quality of life of patients, in this case with HS, and to improve their care process.”

Cutline: from left to right: 1.Diego Rodríguez Mena2.-Yolanda Gilaberte3.-Mercedes Gimeno4.-Mariano Ara5.-Tránsito Salvador6.-Ana Cristina Castillo7.-Eva Lopez8.-Silvia Lobo9.-Reyes Abad10.-Herminia Navarro