Journal Article

Mitigating Disparity in Health-care Resources Between Countries for Management of Hereditary Angioedema

Aberer Werner, Jindal, Ankur Kumar, Zhong Youjia, Lumry, William, Porebski Grzegorz, Craig, Timothy, Wardman, Fiona, Singh, Surjit, Stobiecki Marcin, Jordan, Anthony, Kang Hye-Ryun, Longhurst, Hilary, Bork Konrad, Kessel Aharon, Weber, Christina, Aygören-Pürsün Emel, Germenis Anastasios, Farkas Henriette, Grumach Anete, Caballero, Teresa, Betchel, Stephen, Bouillet Laurence, Malbran Alejandro, Reshef Avner, Bygum Anette, Lindsay, Karen, Levy, Don, Maurer, Marcus, Ameratunga Rohan, Magerl Markus, Okan, Gulbahar, Psarros Fotis, Grivcheva-Panovska Vesna, Bernstein, Jonathan, Riedl, Marc, Valerieva Anna, Cancian Mauro, Hide Michihiro, Jindal Ankur

2021

Overview

Hereditary angioedema (HAE) is a rare genetic disorder characterized by recurrent episodes of skin and mucosal edema. The main treatment goal is to enable a “normal life” for all patients. However, due to high costs, there are limited options for the management of HAE in most developing and low-income countries. As a result, most of the recommended first-line treatments are not available. In this review, we attempt to highlight the disparities in health-care resources for the management of patients with HAE amongst different countries. Data was collected from HAE experts in countries who provide tabulated information regarding management and availability of HAE treatments in their countries. We reviewed the two most recent international HAE guidelines. Using India, the world’s second most populous country, as a paradigm for HAE management in lower-income countries, we reviewed the evidence for second-line and non-recommended practices reported by HAE experts. Results suggest significant inequities in provision of HAE services and treatments. HAE patients in low-income countries do not have access to life-saving acute drugs or recently developed highly effective prophylactic medications. Most low-income countries do not have specialized HAE services or diagnostic facilities, resulting in consequent long delays in diagnosis. Suggestions for optimizing the use of limited resources as a basis for future discussion and reaching a global consensus are provided. There is an urgent need to improve HAE services, diagnostics and treatments currently available to lower-income countries. We recommend that all HAE stakeholders support the need for global equity and access to these essential measures.

• Publisher: Springer Nature B.V
• Subject: Angioedema / Disease management / Edema / Genetic disorders / Health care / Health disparities / Low income groups / Mucosa / Patients