Hereditary angioedema in Latin America: international recommendations, expert consensus, and reported implementation barriers

@article{guidosfogelbach2026hereditary,
  title = {{Hereditary angioedema in Latin America: international recommendations, expert consensus, and reported implementation barriers}},
  author = {Guillermo Arturo Guidos-Fogelbach and Andrea Aida Velasco-Medina and Freya Helena Campos-Romero and Nora Alarcón and Antonio Albarrán-Godínez and Mariana Bonifacino and Oscar Calderón and Iván Cherrez-Ojeda and Herberto José Chong-Neto and Gonzalo Chorzepa and Timothy Craig and Libia Susana Diez and Juan Carlos Fernández de Córdova-Aguirre and Ana María Gallardo and Masumi Grau-Tanabe and Rosario Grauert and Anete S Grumach and Darío Josviach and José Jesus López-Tiro and Ileana María Madrigal-Beas and Eli Mansour and Juan José Matta-Campos and Edison Morales and Blanca María del Refugio Morfin-Maciel and Sandra Agustina Nieto-Martínez and Margarita Olivares and Eduardo Enrique Piñeyro-Beltrán and Germán Darío Ramón and Jorge Mario Sánchez-Caraballo and Mauricio Sarrazola-Sanjuan and Joselit Torres and María Eugenia Vargas-Camaño and Daniel Vázquez and Solange Valle and Ricardo Zwiener},
  journal = {Frontiers in pharmacology},
  year = {2026},
  month = oct,
  doi = {10.3389/fphar.2026.1933477},
  url = {https://europepmc.org/article/PMC/PMC13668836},
  note = {CC BY},
}

TY  - JOUR
TI  - Hereditary angioedema in Latin America: international recommendations, expert consensus, and reported implementation barriers
AU  - Guillermo Arturo Guidos-Fogelbach
AU  - Andrea Aida Velasco-Medina
AU  - Freya Helena Campos-Romero
AU  - Nora Alarcón
AU  - Antonio Albarrán-Godínez
AU  - Mariana Bonifacino
AU  - Oscar Calderón
AU  - Iván Cherrez-Ojeda
AU  - Herberto José Chong-Neto
AU  - Gonzalo Chorzepa
AU  - Timothy Craig
AU  - Libia Susana Diez
AU  - Juan Carlos Fernández de Córdova-Aguirre
AU  - Ana María Gallardo
AU  - Masumi Grau-Tanabe
AU  - Rosario Grauert
AU  - Anete S Grumach
AU  - Darío Josviach
AU  - José Jesus López-Tiro
AU  - Ileana María Madrigal-Beas
AU  - Eli Mansour
AU  - Juan José Matta-Campos
AU  - Edison Morales
AU  - Blanca María del Refugio Morfin-Maciel
AU  - Sandra Agustina Nieto-Martínez
AU  - Margarita Olivares
AU  - Eduardo Enrique Piñeyro-Beltrán
AU  - Germán Darío Ramón
AU  - Jorge Mario Sánchez-Caraballo
AU  - Mauricio Sarrazola-Sanjuan
AU  - Joselit Torres
AU  - María Eugenia Vargas-Camaño
AU  - Daniel Vázquez
AU  - Solange Valle
AU  - Ricardo Zwiener
PY  - 2026
DA  - 2026/10/01
JO  - Frontiers in pharmacology
DO  - 10.3389/fphar.2026.1933477
UR  - https://europepmc.org/article/PMC/PMC13668836
AB  - 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.
SN  - 1663-9812
ER  -