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Racial/Ethnic disparities in management of a rare and debilitating disease

Published: August 28, 2021

The fields of science and medicine shoulder the responsibility of advancing the health and well-being of all people, even when societal expectations and standards might be lagging. In a world that has historically marginalized members of society based on race, ethnicity, sex, and socioeconomic status, healthcare institutions remain recognized as centers of trust. However, healthcare institutions are operated by people, and people will always have biases, whether implicit or explicit, that are capable of resulting in disparate quality of care. Hereditary angioedema (HAE) is a rare disease affecting approximately two in 100,000 individuals that has only relatively recently had effective treatments identified. Though HAE equally affects males and females as well as all racial and ethnic groups, research studies regarding HAE therapeutics overwhelmingly underrepresent minorities, conferring possible risk of racial/ethnic disparities in the real-world application of these HAE therapeutics and other aspects of HAE management.

In a study conducted by Sylvestre, et al. published in The Journal of Allergy and Clinical Immunology: In Practice, the authors investigated the influence of race and ethnicity on the research and care of HAE patients. To accomplish this objective, the authors reviewed phase II and III clinical trials for HAE therapeutics used in the United States and captured the available demographics of the study participants. The authors then queried the TriNetX Diamond Network (Cambridge, Massachusetts), a claims-based database with records from over 200 million patients in the United States, and identified patients receiving treatment for HAE. The authors categorized the HAE patients within the database based on their demographic information and then examined racial and ethnic differences in the diagnosis and treatment of HAE.

The results of this study demonstrated that White patients with HAE were significantly overrepresented in clinical trials when compared to the real-world data obtained from the claims-based database. Conversely, HAE patients of minority backgrounds were underrepresented. These observations suggest that individuals of minority race and ethnicity have to conform to treatments geared more for White HAE patients. Further exploration of the data obtained from the TriNetX database revealed no appreciable racial or ethnic differences in the age of treated HAE patients. However, the prevalence of HAE diagnosis among Hispanic patients was lower than what would be expected, suggesting that Hispanic patients may be underdiagnosed. Subtle differences in HAE treatment modalities were also identified between Black and White HAE patients, with Black patients being under-prescribed C1 inhibitors and icatibant. Black HAE patients were also identified as having fewer hospitalizations for management of angioedema attacks when compared to White HAE patients. This study highlights the need for measures to enhance minority involvement in HAE clinical research to help reduce the risk that racial/ethnic disparities may be translated into disease management in the real world.

The Journal of Allergy and Clinical Immunology: In Practice is an official journal of the AAAAI, focusing on practical information for the practicing clinician.

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