Hereditary angioedema in Latin America: international recommendations, expert consensus, and reported implementation barriers
Year: 2026
Type: article
Abstract: Background Current international hereditary angioedema (HAE) guidelines and treat-to-target recommendations emphasize accurate diagnosis, early on-demand treatment, procedure-related short-term prophylaxis, individualized long-term prophylaxis (LTP), and routine assessment of disease control and quality of life. Evidence on implementation in Latin America remains limited. We aimed to assess concordance between international guidance and the consensus of a selected Latin American expert panel and to identify expert-reported implementation barriers. Methods A scientific committee developed and externally validated a 74-item questionnaire (domains summarized in Supplementary Table S1 ) and conducted a two-round Delphi process among Latin American HAE experts. Consensus items were rated on a nine-point agreement scale, with consensus defined a priori as at least two-thirds of respondents scoring within a three-point band in the agreement or disagreement range. Descriptive items captured expert-reported diagnostic testing, treatment patterns, monitoring practices, and perceived implementation determinants. Consensus findings are summarized as meeting the prespecified threshold; descriptive findings are reported with item-specific n/N when available. Instrument validation (July-November 2024) showed high inter-rater agreement (Kendall W = 0.84; p < 0.001) and excellent internal consistency (Cronbach alpha = 0.92). Results Thirty experts from 10 countries completed the process (Argentina, Brazil, Chile, Colombia, Ecuador, Mexico, Panama, Peru, Uruguay, and Venezuela). The prespecified consensus threshold was met for core biochemical diagnostic work-up, selective genetic evaluation, first-line targeted LTP (pdC1-INH, lanadelumab, and berotralstat), continued availability of on-demand therapy, routine monitoring, and management of special populations. The principal expert-reported implementation signal was limited feasibility: frequent or constant prophylaxis-supply interruptions were reported by 19/30 experts (63%), including 13/23 (57%) practicing in settings where public or insurance coverage was reported. Cost (19/30; 63%) and medicine availability (8/30; 27%) were the most frequently reported barriers. These reports were not independently verified against reimbursement, procurement, formulary, or inventory data. Conclusion Within this selected panel, expert consensus was broadly concordant with international HAE guidance. Panelists reported barriers involving diagnostic testing, financing, medicine availability, and continuity of supply; however, these findings are perceptions and reported practices, not representative national or regional estimates or audited health-system data. They identify candidate implementation priorities that require confirmation through patient-level registries and objective access data.
Source: Frontiers in Pharmacology
Authors: Guillermo Arturo Guidos-Fogelbach, Andrea Aida Velasco-Medina, Freya Helena Campos-Romero, Nora Alarcón, Antonio Albarrán-Godínez, Mariana Bonifacino, Oscar Calderón, Iván Cherrez-Ojeda, Herberto José Chong-Neto, Gonzalo Chorzepa, Timothy Craig, Libia Susana Diez, Juan Carlos Fernández de Córdova-Aguirre, Ana María Gallardo, Masumi Grau-Tanabe, Maria-Rosario Grauert, Anete S Grumach, Dario Josviack, José Jesus López-Tiro, Ileana María Madrigal-Beas, Eli Mansour, Juan José Matta-Campos, Edison Morales, Blanca María del Refugio Morfin-Maciel, Sandra Agustina Nieto-Martínez, Margarita Olivares, Eduardo Enrique Piñeyro-Beltrán, Germán Darío Ramón, Jorge Mario Sánchez-Caraballo, Mauricio Sarrazola-Sanjuan, Joselit Torres, María Eugenia Vargas-Camaño, Daniel Vázquez, Solange Valle, Ricardo Zwiener
Institutions: Instituto Politécnico Nacional, Hospital General de México, Universidad Espíritu Santo, Humboldt-Universität zu Berlin, Fraunhofer Institute for Translational Medicine and Pharmacology, Freie Universität Berlin, Charité – Universitätsmedizin Berlin, Hospital de Clínicas Universidade Federal do Paraná, Universidade Federal do Paraná, University of Pennsylvania, Universidad de Antioquia, Hospital Roberto del Rio, Universidad de Los Andes, Universidad de Los Andes, Clínica Alemana, Hospital Central de las Fuerzas Armadas, Faculdade de Medicina do ABC, Mexican Social Security Institute, Hospital de Especialidades, Universidade Estadual de Campinas (UNICAMP), Centro Medico Nacional Siglo XXI, Instituto Nacional de Pediatria, Institute for Social Security and Services for State Workers, Universidad de Pamplona, Hospital Vargas, Universidade Federal do Rio de Janeiro, Hospital Universitário Clementino Fraga Filho, Hospital Universitario Austral
Language: English
Subfield: Hematology
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $3,801
OpenAlex ID: W7215118293