A study published in the Journal of Allergy and Clinical Immunology: In Practice reported that the prevalence of hereditary angioedema (HAE) and access to treatment for it vary significantly across the Asia Pacific region and highlighted the need for improved diagnostic testing availability.
Patients with HAE experience periodic episodes of self-limiting edema, resulting in significant morbidity. However, studies indicate that early diagnosis and treatment can contribute to improved health-related quality of life.
Due to the global prevalence of this condition, the World Allergy Organization and the European Academy of Allergy and Clinical Immunology have together published international HAE guidelines. An international panel of experts developed these guidelines; however, the exact needs and challenges of individual countries have yet to be fully elucidated.
The authors of this study hence sought to investigate the prevalence and needs of HAE intervention in the Asia Pacific region. They sent a structured questionnaire consisting of 28 questions specific to individual countries/territories/medical centers to 14 representatives across the region. If participants were from the same country or territory, the research team checked for consistency among the answers and used the average score.
Read more about HAE etiology
The Asia Pacific region included in this study covered around 46% of the world’s population. The researchers reported that the overall prevalence of HAE in the Asia Pacific region had a very wide range, from 0.02 to 0.33 per 100,000 people. Only 50% of countries registered on-demand medications for HAE, and only 33% registered prophylactic treatment.
The availability of patient support groups was similarly sparse; only around 50% of countries and 33% of territories reported having them. In terms of diagnosis, all 14 representatives had facilities to test for C4 levels, while 64% had facilities to test for C1 inhibitor levels and C1 inhibitor function.
“The epidemiology of HAE in the Asia Pacific region appears to be different from that in reported Western populations, likely because of a lack of available diagnostic testing in many countries and territories,” the authors of the study concluded. “Further studies to dissect socio-economic differences versus genuine biological and ethnic differences are needed.”
Li PH, Pawankar R, Thong BYH, et al. Epidemiology, management, and treatment access of hereditary angioedema in the Asia Pacific region: outcomes from an international survey. J Allergy Clin Immunol Pract. Published online December 26, 2022. doi:10.1016/j.jaip.2022.12.021