Real World Data Of Canadians Living With Hereditary Angioedema: Part 3- Treatment Utilization

Abstract

RATIONALE: Hereditary Angioedema (HAE) is a complex debilitating disease that is often misdiagnosed and under treated. Our study objective was to gain insight into which treatments Canadians are using for their acute attacks, prophylactic treatments, and the frequency of administration. METHODS: In 2017-2018, the first National Canadian HAE survey was electronically sent to all HAE Canada members. The following data was based solely on adult participants. RESULTS: Participants are treating with: C1 esterase Inhibitor (Berinert)-61%, C1 esterase Inhibitor (Cinryze)-3%, Icatibant (Firazyr)-10%, Androgen (Danazol)-5%, Tranexamic acid-3%, No pharmaceutical treatment-3%, and Other-15%. Berinert is being used: On demand (36%), Chronic Prophylaxis only (9%), Chronic Prophylaxis and on demand (55%). Cinryze is being administered for: Chronic Prophylaxis only (33%), and for both Chronic Prophylaxis and on demand (67%). Firazyr is being administered: On demand (89%), and for both Chronic Prophylaxis and on demand (11%). Danazol is being used for: On demand (25%), Chronic Prophylaxis only (25%), Chronic Prophylaxis and on demand (50%). Tranexamic acid is taken for Chronic Prophylaxis and on demand (100%) by all respondents. CONCLUSIONS: The data collected demonstrates that treatments are being used interchangeably for acute and prophylaxis treatment despite the indications listed on the product monographs. These results validate that patients in consultation with their HAE specialists have determined an individualized treatment schedule. All results are limited to the respondents and may not represent the broader Canadian HAE population.