TY - JOUR
T1 - Universal Access to On-Demand Treatment of Patients with Hereditary Angioedema, the Chilean Experience
AU - Escobar, Juan J.
AU - Aguirre, Joaquín
AU - Ibáñez, Samuel
AU - Cid, Bárbara J.
AU - Campillay, Rolando
AU - Gallardo, Ana María
AU - Grau, Masumi
AU - Hoyos-Bachiloglu, Rodrigo
N1 - Publisher Copyright:
© Mary Ann Liebert, Inc.
PY - 2023/12/1
Y1 - 2023/12/1
N2 - Background: In Chile, patients with hereditary angioedema (HAE) type I and type II are protected under Ley Ricarte Soto (LRS), which guarantees access to on demand plasma-derived C1-INH (pdC1-INH) since 2018. We aimed to analyze the first 3 years of LRS. Methods: Review of the LRS database between 2018 and 2021. Results: During the study period, 154 patients were covered by LRS, with an estimated prevalence of HAE in Chile at 0.8:100,000 inhabitants. A delay in diagnosis of 22 years was noted, 50 patients received epinephrine during an attack before the diagnosis of HAE. Mean number of attacks per year was 8, with 50% of adults and 42% of children experiencing more than 1 attack per month. Conclusion: Disease awareness must improve to reduce the diagnostic delay of HAE. Long-term prophylactic medications should be included in LRS to treat patients with high attack rates and control the costs of frequent on-demand treatment with pdC1-INH.
AB - Background: In Chile, patients with hereditary angioedema (HAE) type I and type II are protected under Ley Ricarte Soto (LRS), which guarantees access to on demand plasma-derived C1-INH (pdC1-INH) since 2018. We aimed to analyze the first 3 years of LRS. Methods: Review of the LRS database between 2018 and 2021. Results: During the study period, 154 patients were covered by LRS, with an estimated prevalence of HAE in Chile at 0.8:100,000 inhabitants. A delay in diagnosis of 22 years was noted, 50 patients received epinephrine during an attack before the diagnosis of HAE. Mean number of attacks per year was 8, with 50% of adults and 42% of children experiencing more than 1 attack per month. Conclusion: Disease awareness must improve to reduce the diagnostic delay of HAE. Long-term prophylactic medications should be included in LRS to treat patients with high attack rates and control the costs of frequent on-demand treatment with pdC1-INH.
KW - angioedema
KW - epidemiology
KW - plasma derived C1 inhibitor
UR - https://www.scopus.com/pages/publications/85176391259
U2 - 10.1089/ped.2023.0083
DO - 10.1089/ped.2023.0083
M3 - Article
C2 - 37917067
AN - SCOPUS:85176391259
SN - 2151-321X
VL - 36
SP - 130
EP - 132
JO - Pediatric, Allergy, Immunology, and Pulmonology
JF - Pediatric, Allergy, Immunology, and Pulmonology
IS - 4
ER -