From President Sarah Smith, HAE Spain (AEDAF)
23rd AEDAF General Assembly: Because of our decision to avoid in-person events during all of 2021 and in keeping with the Association’s Statutes, AEDAF held its 23rd General Assembly on Zoom on 11 November 2021. We are hoping that in 2022 we can resume face-to-face meetings and events and are planning to hold our 24th General Assembly and Annual Meeting in person on 26 March 2022.
Centers of Reference for HAE: In July 2021, Spain’s Ministry of Health approved three CSUR (Reference Centers, Services or Units of the National Health System) for Hereditary Angioedema (children and adults).
These three centers, the first officially designated national centers of reference for HAE in Spain, are:
- University Hospital La Paz (Madrid): Coordinator, Dr. Teresa Caballero Molina
- University Hospital Vall d’Hebron (Barcelona): Coordinator, Dr. Mar Guilarte Clavero
- University Hospital Virgen Del Rocio (Seville): Coordinator, Dr. Stefan Cimbollek
Dr. Caballero says that it has taken a lot of time and effort to achieve the designation of these official national centers of reference. The three centers are now in the process of preparing a document to facilitate patient access to the centers and to unify criteria and coordinate among themselves in order to benefit patients and improve their healthcare.
Project “Zero Attacks”: During the National Congress of the Spanish Society of Allergology and Clinical Immunology (SEAIC) in October 2021, the Spanish Study Group on Bradykinin-Induced Angioedema (GEAB) presented the project “Cero Ataques” (Zero Attacks), an initiative that aims to raise awareness of the situation of the more than 800 patients affected by HAE in Spain. This project is supported by CSL Behring and coordinated by Dr. Mar Guilarte, allergy specialist at the Vall d’Hebron Hospital in Barcelona and member of GEAB. The objectives of this project are to promote reflection and understanding of the impact of this rare disease, to increase awareness of the support needs of HAE patients, and to identify future work areas in order to improve their management.
“It was practically impossible to think about a patient having zero attacks until recently”, says Dr. Guilarte, “but today, for some patients, it is now almost a reality and means they no longer feel sick and can lead normal lives. Zero attacks implies total control of the disease; patients can improve their quality of life and they can make plans as they no longer have to face the unpredictability of having an angioedema attack at any time or in any place that would make them unable to carry on with their day-to-day activities.”
In this sense, Dr. Guilarte points out that to improve the quality of life of patients “we must offer them therapeutic and diagnostic strategies that reduce their burden of disease. It is important that all HAE patients have access to optimal treatment, that they have a good action plan to know how to act in the event of an attack and that HAE management always be individualized for each patient, taking into account their previous experiences, their personal situation, and their current burden.”
Currently, HAE treatment is experiencing a “unique moment”, says Dr. Guilarte: “We have new treatments for preventing life-changing attacks in patients and that, in many cases, achieve control of the disease.”
Specifically, the research on HAE focuses on the study of new treatments, especially aimed at preventing attacks, and also at the identification of biomarkers for a better understanding of the pathophysiology of HAE that will help establish the best therapeutic strategy for each patient. Likewise, instruments are being developed to be able to study the control and impact of the disease, to evaluate its burden or its severity and, thus, to be able to better assess the response to the different treatments.
Finally, Dr. Guilarte says that “the current situation is not perfect. Access to these new treatments is not universal as they are limited to those patients with a high burden of the disease; as a result many patients continue to have attacks and live with the fear and uncertainty that having an episode of angioedema implies.”